Rusty Racer

I can see!

2012-02-02T18:12:00.001+13:00

I picked up my new glasses today and was amazed on the drive home when I stopped at a traffic light that I could read the magazine covers at a stand on the footpath! Can't wait to see what my vision will be like once I get cataract surgery at the end of chemo!

I also got a call from Travis at the Blood & Cancer Center, saying that he had been advised by the drug company that make Brentuximab that I was required to be on 20mg or less of Prednisone and could I drop down from 25 to 20 as of tomorrow. (I'd actually pointed this out to both my Oncologist and Haematologist that it was a requirement of the clinical trials to be on no more than 20mg.. but no one listens ) ;)

Weening of prednisone is one of my biggest goals in life, second only to beating this cancer.
Just hope my lung inflammation doesn't flare up and cause all sorts of issues with my Brentuximab treatment. Fingers crossed!

..Ron

Adcetris / Brentuximab has arrived.

2012-02-01T13:44:00.006+13:00

Finally the new drug has arrived in the country. Richard Isaacs my oncologist sent me a text this morning to say it had arrived and that he would like to start treatment on Feb 13th 2012.

The CT scan results came in a few days back too.. a couple of modestly enlarged (2.5 to 3cm) lymph nodes in both my abdomen and pelvis. Not a lot else to see. The radiologist had no idea what to make of my lungs, the left lung being a total mess. I said to Dr Isaacs that my lungs were a bit of an enigma, no one's really sure what was going on there... lymphoma or BOOP or fibrosis. My spleen is still slightly enlarged too.

He asked if I still wanted to continue with the Brentuximab in light of the CT scan. I think he was thinking of waiting until I was in worse shape.. what I call the parachute effect. But I was in a pretty bad state a couple of months ago and the idea of the Vinorelbine was to get me to this stage so I'd be in better shape for the new treatment. I said I wanted continue and that my low blood counts showed that I still had some degree of marrow involvement that needed to be considered.

So here I am, in pretty good shape and hopefully going to get a whole lot better.
It's not like there's a huge cancer burden to get rid of.. just a spring clean! (well that's my theory!)

Hey here's a laugh.. further to yesterday's drama where I fitted larger brakes to my car only to find the wheels no longer fitted..
I purchased later model STi wheels today from the guy on Trademe, they fitted perfectly and he only wanted $150 for the whole set, an absolute bargain. I dropped both sets of wheels off at the tyre shop this morning to have the tyres swapped over expecting to pay about $90 for the job. Later in the day I got a phone call from the tyre shop saying they had a buyer for my old wheels for $200 and there was no charge on the fitting of my new ones!
Talk about falling down the toilet and coming up with gold teeth! ..or in this case.. Gold wheels! :)

Cheers! ..Ron

Drugs, Vision, Brakes and Privacy.

2012-01-31T19:12:00.001+13:00

Not a word on when I will see the arrival of Brentuximab. All I can do is wait and hope that maybe it will arrive by the end of the week in time to be sent up to Auckland where it will be mixed and prepared and then sent back via Air courier to Palmerston North on the day it's administered. Apparently it has a 12 hour shelf life once mixed and it can only be prepared by a particular drug company in Auckland.

I had my eyes tested today and have ordered a new pair of glasses to get me through until I'm in a position to have cataract surgery at the end of the chemo, Probably in about six months.
The optometrist said my eyes were still in pretty good shape, no glaucoma and the optic nerve looked very good, so no diabetes damage either. It's nice to know I'm not going to go blind any time soon!

One thing he did say with regards to cataract surgery that was very exciting is that the lens they put back in would be tailored to suit my vision, so I'd actually have better vision than I did previously, no astigmatism for instance, which I've always had. He said if people knew just how good their sight was going to be after the surgery they wouldn't put it off for years like some often do. He said it's like having the sight of a teenager again, more vibrant colours and clarity.

I should have some new glasses by Friday, I'm getting new lenses fitted to a set of frames I bought about seven years ago but barely used. They are light weight Titanium and cost a me a small fortune, so I figure I'd better get some use out of them.

After a busy day yesterday working on a Celica GT4 suspension job, I thought I'd take it easy today and do some repairs on my Impreza STi road car. The brakes on it are terrible from the factory so after finding a set of later model up-rated brakes on Trademe at a very good price I decided to fit those today as well. All went well, everything bolted up perfectly and they looked great!..
That was until I went to fit the wheels back on!! They don't clear the larger brake calipers, so now I have a car with great brakes and no wheels! DOH!

As luck would have it there was a guy selling a set of factory STi Subaru alloy wheels on Trademe that fitted correctly with the new brakes. What was really scary, and is probably a sign of just how small this world is getting, is that when I entered his phone number into my phone to call him, his name came up automatically! Apparently we are Facebook friends due to our motorsport connections.

It's scary to think that Google that has all this info can link everyone that has ever entered anything into any of the many arms of the Internet that it controls. Everything from Facebook, Picasa, YouTube, Google's search engine or even this Blog. They know my details and they know the details of everyone I know and every connection as it fans out from there. The fact that they hide the information from us is supposed to make us believe we have privacy. Scary!!

Delays..

2012-01-28T17:26:00.005+13:00

I got a phone call 3pm Saturday afternoon, It was oncologist Richard Isaacs phoning to ask how things had gone with my meeting with Alwyn D'Souza on Thursday. He said there was still no sign of the drug, so he had rescheduled the first cycle appointment for a week later, Tuesday the 7th Feb. He asked if I'd managed to get a CT scan, which I had, and then with his parting words he told me his horse was going to win today. It's pretty cool when you have a doctor that's as laid back as he appears to be.

So yesterday I had a re-staging CT scan done at Pacific Radiology in Lower Hutt. My health insurance picked up the tab and pre-approved the procedure in under 24hrs. The bill came to $1266.
Once again though the CT doctor failed to get a cannula into my pathetic veins and as a result the scan was performed without contrast medium. Apparently it doesn't make a huge difference to the resolution. I have my doubts. (I was given a CD of the images for my records. I took a look, nothing discernible for an untrained eye to see though) Richard will phone me with the results next week.

I've had a busy couple of days. Yesterday all the wiring was finished and signed off in the outside garage. I've also installed some green spotlights that shine up into the bush giving a really cool effect for when we have BBQ's or a Spa.

Today I cleaned out the gutters of leaves, installed some plastic mesh to stop it happening again and then made some extra brackets to support the guttering as I felt it wasn't as supported as it should be. I then removed and cleaned the water catchment filters on the both water tanks.

I unscrewed the inspection plate on the bottom of the 115mm inlet pipe to make sure there was no debris or dead birds lurking in the underground pipework. Unfortunately for me there was about 200 litres of water just waiting for me to unscrew that plate! Soaked would be an understatement! It blew out like a geyser ..However it was clean. (as was I!)

Tomorrow I plan to finish trimming out Sarah's little office workshop with some 3/4" beading to tidy up the corner gaps in the plywood. Then I'll design her a workbench and maybe build it too.. depends on time.

I'm booked for an eye exam and new lenses for next Tuesday. I have to do something about my failing eyesight, just to get me through till I can have cataract surgery. Today I feel like I'm walking around in a blurry, smokey haze. My biggest fear is that it will eventually get so bad I'll be unable to drive, Let alone race!!

..Ron

Waiting for Brentuximab to arrive.

2012-01-26T18:59:00.003+13:00

It's been a busy time these last couple of weeks.
Firstly I'm still feeling really good. My blood counts have improved again, platelets now 47 and haemoglobin 109. I'm a lot more steady on my feet and feel more agile. I'm no longer having to gingerly make my way around, afraid of falling at every step.

Last weekend I entered the Port Road Sealed Sprint in my Mitsubishi Evo and was pleasantly surprised to win outright. It was a rain affected result (I'm sure there was some sort Duckworth-Lewis calculation in the results) with times from only the first two dry runs being counted due to some people not being able to complete their third run in the torrential rain and resulting surface flooding.

Last week I received word from the pharmacy at Wellington hospital that the drug had been ordered and they expected it to arrive within the week. So far it hasn't appeared. (It can only be supplied to a registered public hospital and as the private hospital I'll be using isn't registered with the drug supplier, it explains why Wgtn hospital pharmacy has become involved).

Yesterday I drove up to Palmerston North to meet with private oncologist Dr Richard Isaacs to discuss my treatment and for him to get an assessment of me. The meeting went well and I was surprised just how much medical history and information I have stored up in my head. What was even more surprising was that I managed to get nearly all of it out, with only a few minor things forgotten but then remembered on the long drive home.

One thing that we both agreed on was the need for a CT scan before starting treatment. This will give us a benchmark to measure any improvement and to re-stage my disease post Vinorelbine.
I've been running around all day today getting the necessary forms filled out to get an urgent CT scan done tomorrow under my medical insurance. I'll also get a bone density scan done too, I'll pay for that myself as it's only $150 (compared to the $1500 CT cost).
Hopefully my bones haven't become too weakened by the two years of prednisone.

I had a meeting today with my haematologist, Dr Alwyn D'Souza, and we went over quite a number of issues. He is also keen to get me weened off prednisone, but we need to see what effect the Brentuximab has on my lungs before doing so. If my lungs get better and the cough goes away then it's safe to say I can ween off the pred. If not then it's status quo, or maybe a small reduction, just enough to keep it under control (assuming it would be BOOP or some form of pneumonitis).

My eye sight is absolutely shocking now. An appointment last month with an eye specialist conformed that I have cataracts as a result of the long term use of prednisone. However in the last few weeks the decline in my focus has been quite frightening to the point I no longer feel confidant driving in certain conditions such as dusk etc. Tomorrow I'm going to see an optometrist and see if I can get a pair of cheap corrective lenses just to get me through the next three months until I can have eye surgery for the cataracts. Lenses won't fix the smokey grey effect of cataracts but they will at least mean I can focus a little better. (hopefully).

So assuming the drug arrives sometime soon I am booked for my first cycle of treatment on Tuesday 31st Jan in Palmerston North at Richard Isaacs clinic. If the drug is late in arriving it will probably be the week following.. there's no hurry I guess. I'm pretty well at the moment, which is good as it means it will have less cancer burden to work on (well that's my theory!)

I'll update once we have confirmation of the treatment date.

...Ron

Feeling even better!

2012-01-14T18:55:00.003+13:00

Thursday I had my weekly blood test.. haemoglobin had climbed from 102 to 110.
That's the first time I've had a natural increase in my counts in a very long time.
I've been relying on blood transfusions to keep me going and even then the count would range between mid 80's and low 100's (less than 135 is classified as anemic). It looks like my bone marrow has recovered enough to start producing blood again. Thanks to the palliative chemo.

My PICC line was removed last night by the district oncology nurse as it's unlikely I will need it anymore for blood transfusions or chemo. Brentuximab can be administered via a cannula and as the cycle is every three weeks it's not worth keeping the line in. The weekly changing of the dressing and flushing of the line plus having to keep it dry has been a real hassle, I'm glad it's out.

My energy levels are at the best they have been since March/April 2011 before the Nocardia bug really hit me hard.
I've been fit enough to be working both around the house, (I got the weed-eater out believe it or not!) and on cars.
Today I gave my Hiace Van a full service and repaired some things that had needed doing for months.

I've still got this really annoying cough though. It's annoying to both myself and those around me. I'm really hoping that it will vanish when the new treatment starts. It has with previous treatments but then I didn't have BOOP back then so who knows.. (I won't even start on the continuing itch)

I was phoned by Travis (the Blood & Cancer ward registrar) earlier in the week to ask my body weight. Apparently he is now in charge of obtaining/ordering my Brentuximab/Adcetris and not the Doctor in Palmerston North. I have no idea what the situation is. It could be that the first cycle will in fact be done at Wellington hospital and as a result they must get the drug from overseas.I'm sure I'll find out the full story in the next week or so or when someone comes asking for a very large down payment.

For the last twenty or so months I've kept an excel spread-sheet of my general state of health, what drugs I'm taking and body temperature etc. One thing I log occasionally is my impression percentage-wise of how well I feel compared to what I'd expect if I was fit and well (ie 100%). It's the only way of truly knowing where I am at as I'm forever thinking I'm better than I really am and have no way of relating it otherwise.
Last week I considered myself to be at 40% and today I'm feeling 50%. If you think that is low then consider this.. Back in June when I was hospitalised with the life threatening Nocardia infection and pneumonia, I entered a figure of just 2%.

At that time I was too weak to walk, my muscles had atrophied so much my legs looked like bits of string with a knot for the knees!. However on Thursday night I was sitting outside having a quiet drink of low alcohol beer and some snacks with friends when the phone rang. I assumed it was the district nurse with my blood counts so I jumped out of my chair and ran for the phone. It wasn't until I got to the phone I realised that I'd just ran for the first time since April last year! Another milestone :)

OK.. it's getting closer to treatment time, we have aimed for late January and hopefully that's what will happen. However I'll believe it when I see the drug here in NZ. I'll post an update as soon as it arrives.

PS: I'm racing at the Port road street sprint next weekend, I'll let you know how that goes too! :)

...Ron

I'm Feeling Good!

2011-12-30T19:17:00.002+13:00

It's important to state that because last week I felt like crap!
So far I've spent most family occasions sitting on the couch, and when I did extend myself by venturing outside for a game of petanque or to socialise, I'd soon start feeling fatigued and have to return to the couch.

This week I've slowly been feeling better and better. I still fatigue easily but it takes more effort to get to that state. Today I manged to wrangle a unit of whole blood out of the good people at the Wellington Blood & Cancer Centre. I'd hoped for Two units but Travis (registrar, great bloke) pulled the plug on that request. You can't blame me for trying! I'm feeling really good as a result of the one unit and I'm hoping my counts will stabilise at the new higher level and get me through January in good stead.

I've spent the last week working to finish the car that's on my hoist (it's been there nearly all year) but the more things I fix, the more things I find wrong! The car was stolen and recovered and the mongrels that started to strip it before being caught have just ripped fittings out and butchered parts from one end of the car to the other. I think I have ventured up to "Pick-A-Part" (car dismantling yard) every day this week.
I'd have gone again today to grab a fuel pump housing but it's raining cats and dogs. The old housing having been mangled by someone with the mechanical aptitude of a chimp.

Still no contact from Dr Richard Isaacs, the man that will treating me, but that's not too surprising considering the time of year.
So no news on when treatment will start.

Tomorrow is new years eve. Sarah and I will spend it at my brother and sister in law's. Hopefully not entirely on the couch, but with this rain who knows?.
Then we are into 2012 and I'm going to hit the road running. I feel great, I have a new (hopefully "miracle") drug on the way and Sarah and I have made some awesome plans for the future.

Wishing you all the best for the coming year! ...Ron

Merry Christmas :)

2011-12-24T16:38:00.005+13:00

Gosh Christmas Eve already! Where did this year go? Spent sitting in a hospital bed me thinks.
2011 was not a good year for me, in fact probably not a good year for New Zealand or a good many other places in the world. Here's hoping 2012 will more than make up for it.

It's been nearly three weeks since I last posted. In that time I've been chemo free and relatively energetic.
Although my energy levels seem to be waning again now, and I cough a lot when I exert myself.
There's been no progress on a schedule for treatment with Adcetris. I would have thought that I would have heard from the oncologist by now and some sort of plan laid out.

I'll be making some phone calls once the holiday break is over and trying to get some answers.
My main concern is that I feel slightly symptomatic. There's a slight occasional ache in my lower pelvis where the lymph node biopsy was taken a few months back, I itch a lot, cough more and still run at least two low grade fevers every day. (sub 38C) So as you can imagine I'm very keen to start treatment.

My blood counts are OKish, haemaglobin is a little low at 104 (normal range 130-175) which would explain the lack of energy. I will have one more blood test next Wednesday and if my counts are stable then I'll have my PICC line removed from my arm. That will be good, means we can fire up the spa-pool and I can enjoy a long soak with a low alcohol beer or two. :)

I found a post from a woman who's son was treated with Adcetris following several unsuccessful chemo regimes. He is now in remission, although she hasn't given the full time frame it's still good to hear stories about other Hodgkin's Lymphoma patients who have had positive results on the drug.

I've been working in my workshop again for the first time since May. Only slowly and in short bursts but I've got a lot done on the car that's been there for most of this year. Slowly getting all the upgrades the customer requested. Luckily he is in no hurry to get it back and the longer it sat there the more things he thought of to get done.

There's now just a few plywood panels to install in the new garage, and a few electrical fittings to connect and it will be ready to be signed off by the council. My father in law has been helping us with that when he can, which is good because I can't man-handle the plywood sheets. :)
However I must say I am a lot more stable on my feet than I've been for some time. I no longer feel like I am at constant risk of falling over, So I must be building some new muscle. My weight is just a tad under 70kg, about 5-8kg under my ultimate goal weight. That won't be achieved until I'm cancer free and off the steroids.

I've set a goal of competing at the "Port Road Sealed Sprint" on Jan 22nd in the Evo and have purchased some new "Federal" brand race tyres to that end. There's been lots of talk lately about how good these tyres are, with them now being the official tyre for Targa competition. A friend of mines son Daniel has used his contacts to get me a set at a very good price, so I am looking forward to testing them on the tight Seaview road circuit. Hopefully I won't be as rusty behind the wheel as I've been at the last two events I've competed in. ;)

Well That's enough from me!
Wishing everyone a great Christmas and New Year Break and that 2012 brings all that you hope for.! Take care ..Ron

A plan..

2011-12-08T14:25:00.002+13:00

I received a phone call last night from my haematologist, Dr D'Souza.
He was still working and it was well after 8pm. He said that he had spoken to the private oncologist in Palmerston North and that he was keen to have me as a patient and to give the treatment in his clinic.
This would involve driving to Palmerston North once every three weeks for each of the cycles of Adcetris. Treatment would probably start in late January. This suits me just fine as it gives me a nice break over the Christmas period. Intitially we will go for 4 cycles and appraise the results before deciding on more.

Apparently the doctor orders his drugs through a company in Auckland, so he'll be in touch if they need payment up front. Something I'm fairly sure would be the case when you are importing over $80K worth.

It's been a bit of a weird week, up and down. Feeling well one day and horrible the next.
Some days I feel like I am climbing the walls.. almost like being a prisoner in my own body.
It's a mix of the steroids and the chemo. Today I'm not too bad.
I had two units of blood on Monday and that made me feel quite unsettled for a couple of days.
Sometimes the blood sparks you up straight away, other times it takes a few days to work.
It almost feels like you need to run it through your system for a while before it cleans up.. it's a strange thing.

Tomorrow I'm back into the day ward for a blood test. My counts are still a little low going by a test I had on Wednesday so we just need to see which way the counts are heading and give blood or platelets accordingly. Going by previous cycles I should start making new blood again by this weekend anyway. Then it's six weeks of no treatment and hopefully feeling pretty good!

I've got a tonne of stuff to catch up on both around the section and in the workshop, so I'm hoping my energy levels climb high enough. I've been a bit slack when it comes to going on the treadmill and stationary bike. I injured my achilles heal a few months back and I'm still limping.
Perhaps I'll make that a goal... to be a lot fitter for the new year.

..Ron

and up..

2011-12-02T17:46:00.002+13:00

It's Friday afternoon December 2nd.
I've just completed my last session (day 8) of my third and now last cycle of Vinorelbine.
Dr D'Souza had suggested today when we spoke that I have a fourth. I declined.
I don't think the benefits are outweighing the results and I want to be well over Christmas/summer break. My blood counts were a little low today, but as I feel so good I suggested we put off a blood transfusion until after the weekend. So I'm back in first thing Monday for another two units.

That then lead us on to Brentuximab (Adcetris). He has given the hospital pharmacy the go ahead to order the drug, just four cycles for now at $20K-ish per cycle. We will then evaluate the results and decide on how many more cycles from there. Each cycle consists of a dose of 1.8mg per Kg of body weight (70kg), given once every three weeks. There's a possibility that we could run anything up to and beyond nine cycles.

He is applying to the Ministry of health for permission for the first cycle to be administered at Wellington Hospital on the grounds that if I have any sort of reaction to the drug they will be able to give me immediate treatment. Something not available in a private clinic.
Other subsequent cycles will be done by a private oncologist probably in Palmerston North, The only one in Wellington is currently unavailable. The reason for all this is that the NZ Govt won't pay for treatment associated with a privately imported drug. I won't even touch on the politics of how unfair that all seems. I'm just happy to have some progress.

Yesterday and today I have had a good amount of energy. Not a huge amount, anyone else would probably call an ambulance if they suddenly started feeling like I do right now. But it's enough to be able to walk around and by pacing myself I have managed to get a fair few errands sorted and things done. I even put a spanner to the car that's been on my hoist for the last six months.
I mildly bumped my arms a couple of times against things and lost a few chunks of skin, such is the damage that prednisone has done in thinning my skin. I think I'll make up some sort of sleeve arrangement to protect my forearms.

I suggested to Sarah that we buy a little run-around for her to drive so that she saves a few dollars on petrol and doesn't wear out the Subaru Impreza STi which is now getting up in the K's, but too good a car to move on. She agreed and we found a really nice low K's Toyota Vitz that by chance was being sold on Trademe by an old friend of mine from the motor-trade.

The only fault we could find was that the air-con wasn't working and I told him that my experience with air-con systems is that they seem to cost around $500 to fix every time they break down. He baulked at the figure and we negotiated a really good deal on the car based on him fixing the air-con at his cost through his work. (he just phoned to say my price was on the money as it needed a new part).
Net result is we got a nice little Toy for $3k under book value and fitted with new tyres and 16" alloy wheels. Bargain!

Up and Down

2011-11-30T11:13:00.001+13:00

I had my first session of my third cycle of Vinorelbine on Friday. I have to admit that I really wasn't looking forward to it. I'd been feeling pretty crappy all last week and the thought of more poison wasn't doing much for my state of mind.

In the end it wasn't too bad, I managed to get through the weekend on some fairly low haemoglobin counts by mainly sitting on the couch and doing as little as I could. Standing up and moving around would bring on a coughing fit and tachycardia, so whenever possible I got Sarah to help me by bringing me snacks and drinks.

Monday I returned to the day ward for two units of whole blood. It's now Wednesday and it seems to have helped considerably with my energy and sense of well being. I'm about to make the 150M walk to the letterbox for the second day in a row. Something that would have been out of the question last week.

This Friday see's my last hit of chemo for the foreseeable future. I'm looking forward to slowly regaining a modicum of stamina as the days go by. Though it probably won't start till 10-14 days from Friday. I think 10 days seems to be the nadir for my blood counts.

Still no word on the Adcetris/Brentuximab drug. One of the haematologists, Travis, had a quick look at the stats and pricing on the drug and was able to confirm that it sells for $6200 per vial out of the UK.
We will need three vials per cycle and between six and nine cycles. It's going to be expensive but right now I'm more focused on just getting our hands on it. The two insurance pay outs more than covers the total, so as it's money I would never have seen had I not had cancer it's easier to mentally right off.

Well it's a fantastic day outside, time to make that walk to the letter box and then pop out for a haircut :)

...Ron

Back to normality.

2011-11-21T17:12:00.002+13:00

I'm back home again, they discharged me on Friday afternoon. Twenty four hours after they first said I could go once the paperwork was sorted. You soon learn to take these things with a grain of salt.

I really didn't mind the three day stay anyway. Sure the food was still bad, but I was straight onto the dietitian's the minute I was admitted and they must have remembered me from the last few times because without even seeing me I was put on the "Extras" diet the moment I asked. Meaning I could pad my meals out with poached eggs, baked beans, cans of Diet Sprite and biscuits. This was the first time I've come out of hospital weighing the same as when I went in. I think I'm getting the hang of things ;)

I was back in the day ward today for blood tests and a catch-up with the Doctor.
My counts are all either good or good enough, so no need for anymore blood transfusions this week.
However they did admit they had gotten their chemo schedule out of kilter and I am now due back in this Friday rather that next as we all believed to be the case. A little annoying as I was looking forward to my blood counts climbing high enough to be able to do some work around the house.

My energy levels right now are minimal and I can't see me getting much done this week at all. Bother!

I spoke to a fellow patient in the day ward today, the sister of an old friend from my past.
She was in the chair beside me and asked if my surname was Scanlan, I said yes and she asked if I remembered her sister, which of course I did. We were friends some 30+ years ago.
She said her sister had told her to keep and eye out for me. I asked "but how did she know I had cancer?" ... "She reads your blog" was the reply.

It's becoming quite scary the number of people I bump into, both old friends and total strangers that read this blog. To me this has become both a record of my treatment for my future reference and a way of keeping family and friends updated on my status.
Knowing that sometimes it is read by complete strangers makes me feel like I should be putting more effort into my writing skills.. Perhaps more stories of Bob or rampaging quadriplegics to entertain a wider audience?. Ultimately that may happen from time to time but for now I stick with the boring updates. :)

I got a phone call from my Income protection insurance provider today. I finally made a claim two months ago once it became obvious that I would not be returning to physical work any time soon.
A problem immediately became apparent. I believed I had insurance cover for when I was unable to earn an income. But the policy was an indemnity cover. Basically they would cover me for two years based on what I earned the year before.

Well since I've been earning less and less since being first diagnosed back in 2005, last years income was pathetic. So on paper it looked like I was going to be paid zip.
The phone call today was to tell me that because I would have been eligible to make a claim in any of the last six years they would base the pay out on my best trading year over that time.
Net result is a very nice lump sum payment that will go towards softening the blow of the cost of Adcetris when it arrives. (when ever that will be) Full marks to Asteron Insurance for going that extra distance.

Till next time !

Back in hospital..

2011-11-15T17:39:00.001+13:00

Over the last couple of days my energy levels had been dropping and dropping.
Not unexpected considering I'm having chemo. However yesterday I just got weaker and weaker.

By evening I found myself unable to move around without feeling faint and dizzy, or even worse I'd start coughing and become anaerobic and completely puffed.. like I'd just run 400M flat out. All this sometimes from just standing up. Not nice.

I was due in the day ward today for a blood transfusion but I knew they'd take one look at me and admit me so Sarah packed an overnight bag for me. Sure enough the nurse took my obs (vital signs) and called the doctor over immediately. He confirmed what we all knew.. I was pretty sick.. low blood pressure, tachycardic, feverish and pale.

Good news is that eight hours later and I'm feeling a lot better. I can move around again and not collapse in a screaming heap.
I should be out of here by the end of the week. I'm not complaining.. I know when I'm sick, and I'm sick. This is the best place to be. Ultimately I'll be fine, of this I'm now sure.

However in the middle of the night last night I was not so sure. I imagined that it would have been very easy to just close me eyes and slip away, that's how weak I was. Beyond fatigue.. almost absolute zero. ..Scary

End of the 2nd cycle

2011-11-13T16:22:00.004+13:00

On Friday I had the last of my chemo for a while.
I don't know that it's done a heck of a lot for me other than help with my blood production and counts.
It will take about another week before I see the counts start to rise again, having been knocked back by the current dose, but hopefully I will have some really good numbers after a few weeks of no chemo.

Right now I'm physically unable to do much at all. I keep making the mistake of standing up and walking to some part of the house for some item or such and then almost passing out as my blood pressure drops, my heart starts racing and I become breathless. It's really not nice.

On Friday at the blood and cancer day ward it was decided that I needed two units of whole blood, this was based on a blood test that was two days old, so who knows what the real readings were like? Ultimately I was only given one unit because there was not enough time to complete two.
I have to get a blood test on Monday morning and then on Tuesday I'll get more blood. I'm betting the counts will be through the floor!

Last weekend was a real mixed bag as far as how I was feeling went. I'd had the first session of the current cycle of chemo on the Friday. I felt awful on the Saturday and decided that I would not race the next day at a hillclimb event as planned. Then on Sunday I woke early feeling really good.
So along with my brother Mark we headed off to the Wairarapa for a few hours motor-racing.

I didn't have any problems with driving the car, but walking around the pit paddock was a real effort.
The organisers were kind enough to let me run in any order I liked. That way I could get my practice and three timed runs all done as quickly as possible and get home to rest.

I used to hold the record for the event (Admiral road) until a few years back when I was pipped by just a fraction of a second by then NZ rally champion Richard Mason. I've always managed to cover the 900 metre course in the 36 second bracket. Last Sunday I was struggling to post a low 38 second time.
Ultimately I was beaten by Ryan Stevens when he managed a 37 second run. I was a little disappointed until I was reminded by both Mark and Sarah that I'm sick and in no way on form. Second place was a very good result considering my state of health.

I'm still waiting for the new drug to be imported. In fact I'm still waiting for someone to front up and take charge of getting it. Lots of talk from the doctors when I see them face to face, but it's always like ground-hog day when I see then again next time. ..a little frustrating. I've decided it will be at least March before anything happens... we shall see.

My broken rib seems to be settling down. It no longer pops in and out as I move, cough or breath.
It's now totally painless and I can sleep on that side without feeling like there is a lump there.
It's amazing how the body can stil heal something that is broken and constantly moving.

A few people have asked me how I'm managing to cope income-wise now that I can't do any physical work. I'm lucky in that I have my wonderful wife Sarah to support me, and on the business side of things I've been able to grow the internet sales from behind my computer keyboard with very little physical effort. I've also developed some new skills in finding car parts on the internet and procuring them for my customers at prices below what is available locally. It's work I enjoy and as I'm just sitting behind my desk and not moving around too much I don't get fatigued and end up coughing all day long.

..Ron

Another Chemo day

2011-11-04T15:06:00.000+13:00

I've been slowly improving as of late. I had to take the long view to realise it because most days I feel like crap.
However I can now see that there's been a big improvement over the last few weeks. It's one thing to say I feel like crap and have no energy because I get tired walking to the fridge. Then it's another to say I feel like crap because I got tired walking to the letter box and back. (My letter box is 150metres away up a steep gravel driveway).

Anyway yesterday I felt pretty good and today I feel even better. However I've just returned from the hospital, having had my vinorelbine palliative chemotherapy. So tomorrow and for the next two weeks I'm expecting to feel pretty "average" as my blood counts drop and then recover.

I'm still having low-grade fevers and sweats (although no true night sweats) and my skin itches like crazy. I still cough when exerting myself or when there's a change in room temperature.

Today I spoke with another of the haematology doctors and he lamented that it was a shame that Brentuximab (Adcetris) was not an option. I quickly told him that I thought it was and that I had the money to pay for it as soon as it was available internationally. He got quite excited by that and said he would follow it up immediately.
He did then mention that because it was a drug that was being imported privately that it would need to be administered in a private clinic such as the one he ran. Hey if it gets me treated and healthy I don't care who clips their ticket along the way.

Apparently M.D Anderson clinic in Texas charges US$40K just for pretreatment tests. Now that I would object to! So I won't be rushing off to the States any time soon for treatment.

Next hit of vinorelbine is Friday next week. After that? who knows? Hopefully there will be word on the Brentuximab.

Blood counts still climbing.

2011-10-28T15:48:00.000+13:00

The haematology nurse just phoned to tell me the results of today's blood test. They show that my counts are still improving.

Platelets are up to 37 from 11 two weeks ago. (normal range 150-400)
Haemoglobin is 124 up from less than 100 (normal 130-175)
White cells are now 3.8 up from 0.63 (normal range 4-11)
Neutrophils are now 1.5 up from 0.1 (normal range 1.9-7.5)

My platelet count will never be back in the normal range, It's hovered down around 30-45 for years now.
It's a legacy of the stem cell transplant and poor marrow.

However the other counts are rocketing up in leaps and bounds percentage-wise.
The white cells and neutrophils mean I have a better first line defence against infection and the higher haemoglobin equates to more energy as more oxygen is able to be carried to the muscles.

I still have this really debilitating cough though, kinda hoped it would go with the chemo.
Perhaps it will when I finally get on the Adcetris. When ever that will be.

I guess I'll know more after my appointment next Friday.

..Ron

We have new blood!

2011-10-25T17:55:00.001+13:00

Finally after more than 6 months of blood transfusions I have started producing my own blood faster than it gets used up. My blood counts today are higher than they have been in ages, and all done under their own steam.

Last Wednesday I went into the Blood & Cancer day ward and was given a unit of platelets and two units of whole blood.
I'd been making no new blood of my own due to both the Hodgkin's infiltration of my bone marrow and the myelosuppressive (suppresses bone marrow and therefore production of blood) nature of the chemotherapy.
The plan was to give me a big enough top up to get me through till today, a period of seven days, so I could visit family in Christchurch.

The doctors did not want me to travel as my neutrophil count was almost zero, at 0.1 This left me with almost no protection from infection and at risk of neutropenic sepsis and fever.
They wrote me a covering letter to give to the doctors at Christchurch hospital outlining my illness's and stating that I was traveling against their advice. They were concerned I'd pick up a rogue bug on the airplane and have no defence against it.

Well personally I've never been one for shying away from doing something just because it might kill me. Heck if I didn't do anything for fear of dying, I might as well not get off the couch.
So as you can imagine I am very, very pleased to find out that not only was I not at great risk while visiting my sister and family, I was actually producing new blood cells as I sat on said couch and watched New Zealand win the rugby world cup! Awesome :)

I did of course take precautions while away. I wore a surgical mask on the plane and avoided possible sources of infection such as raw food and contact with pets.

I next have chemo on Friday 4th November so I will have a good chance to raise my blood counts further and build up a bit of a reserve before they are wiped out again. However I'm sure that they will then return even stronger again after that.

Cheers! ...Ron

Haematomas and more of the same.

2011-10-14T17:56:00.000+13:00

I was kind of hoping that this palliative chemo would make an instant improvement in my level of comfort. So far I feel exactly the same, perhaps it's way too soon and perhaps I expect too much based on previous experiences with higher strength regimes.

I had a session of vinorelbine last Friday and another today.
I am still suffering from the low grade fevers, constant itch and fatigue. Perhaps things will improve once this second dose does it's job.

My haemoglobin and platelets are low so they gave me two units of whole blood today as well, That should perk me up a little over the weekend.
Sarah and I are planning a few days away next week so I'll be given a little extra blood mid-week to see me through to the week after. There is no chemo next week.

Last Thursday was the day they inserted the PICC line. It didn't go well.
I should have noticed that my right bicep, where the line was fitted, was very tight and swollen.
I didn't really think about it until the blood started pouring down my arm as I drove away from the hospital.
The line had leaked where it goes into the vein, filling the surrounding tissue with blood (a haematoma) and then ultimately pushing it's way out through the point where the line enters the arm.

I should have taken a picture it was a huge mess!
I returned to the day ward just as the team were leaving for the day. I became the centre of attention for a while, the nurses fussing over me, changing the dressing, only to have it leak again. Then one of the doctors suggested I be given another unit of platelets to help stop the bleeding. I didn't get home till quite late.

Today was much the same time-wise. Arrived at 8:30am and departed at 3:30pm. It all makes for a very long and tiring day.

I'm hoping for a relaxed weekend.. fingers crossed.

..Ron

Treatment plan for next week and the dangers of paracetamol

2011-10-02T18:23:00.001+13:00

I orginally wrote this in the previous post but it made the whole thing just way too long. Even I fell asleep trying to read it all in one sitting. ;) So I've split the whole thing into two for those of use that are easily bored :)

The treatment plan....
I have a blood test on Tuesday next week, Wednesday I will get blood and platelets if needed.
Thursday I get the PICC line fitted, and then Friday I start chemotherapy.
It's not Adcetris at this point in time, but rather a palliative drug to tide me over, remove the lymphoma from my bone marrow and improve my quality of life in the short term.

Adcetris should be on the market in a couple of months. My life insurance has paid out so I have the money to pay for it, an estimated $120K for the full treatment. But this is now all in the future and won't happen until I relapse or the current treatment is unsuccessful.

I was about to sign off when I realised I hadn't mentioned my downward spiral with paracetamol.
I've been under the care of a diabetes nurse for a couple of weeks now as we try to come to some sort of equilibrium with regards to my blood sugar counts and my medication. All a legacy of prolonged prednisone use. She phoned me to say she had reviewed my last blood test and that my liver function was very bad.

She felt that it must be one of the diabetes drugs and that I should stop taking Metformin immediately.
I said that it was more likely because I was almost living on panadol to keep my fevers at bay.
I'm aware that you should not take more than eight tablets in 24 hours and I thought I was on top of that. However when I actually kept a record of what I took It was more like 10-12 tablets.

The more I took the sicker I was getting and the higher the fevers were between doses.
So I went cold turkey for a day and started only taking one tablet at a time and stretching the gap out as long as I could, running a low grade fever before finally taking one.

In the last 24 hours I've taken just three tablets and feel great. It just goes to show you that even the most medically self aware can get caught out by not keeping records of just what they are taking and how often. Lesson learnt! :(

Re-arranging the deck chairs on the Titanic...

2011-10-02T17:56:00.001+13:00

I went to see my GP, Kyra Jones, on Friday, with a couple of niggling things.. well actually if I was a normal, well specimen of a human being I guess they might be considered quite serious I guess. But they are still not the sort of things you can get fixed in the cancer day ward while getting chemo.

You see I have a hole in the skin on my elbow that just won't heal. When I was hospital in June I got them to biopsy it and sew it up. At that stage it was just a 3mm hole in my skin. A perfect circle, like a miniature well down into the flesh on my arm. It wasn't infected or anything. Just a spot where no skin wanted to grow.

When I took the dressing off 5 days after the biopsy I discovered much to my dismay that I now had a 10mm hole in my arm where no skin appeared to want to grow. And just to rub salt into the proverbial wound, the biopsy was inconclusive!

My GP took a pic of it and sent it off to the plastic surgeon's for his opinion. Personally I think it's a spider bite, probably White Tail.

The other problem is that I was in terrible pain from my ribs. I'd mentioned to my haematologist when I saw him last that I had pain in my right flank and that I thought I'd pulled or torn something from coughing so hard. He had a quick look but to be honest you don't go to a haematologist for rib pain.
It's like going to a neurosurgeon for an in grown toe-nail.

Then last Monday while in the middle of a coughing fit.. "POP!" and an excruciating pain hit me in the right side lower flank. Like I'd been whacked with a hammer in the ribs.
After that, when ever I moved it would pop in and out like one of those children's clicker toys. Not Fun and much pain!!

So Kyra looked at that too. She listened to my chest and had a poke around at each of my ribs.
In response to each press I'd say "yeah that hurts a little, ..that's more painful.."
Then she found the culprit.. "Oooooh! F@&K!!!, yeah that's it" I said as the rib popped in and then out again upon being pressed.

"Yup, that's broken" she said , "Ya think!!" I replied, as the colour slowly drained from my face.

Codeine is a wonderful drug. It seems to have no side effects on me at all but is capable of completely removing the pain and discomfort from having a rib that pops in and out at whim.

There's no treatment for it. ..could take months. I'll even have to put motorsport on hold. Something that even a bone marrow transplant or high dose chemo has previously never managed to do.

You see I think I damaged that rib in the Great Dunlop Targa crash of 2009. The side of the race seat had dug into my ribs when we came to a sudden stop after crashing over a cliff and landing in a paddock below. It was the only injury I sustained, my ribs hurt for two months afterwards but there was no click-clack, so was probably just cracked. It just took two years worth of bone brittling prednisone and a few big coughs to finish it off.

If I were to race and have even a small "off" the rib could puncture my lung, and with my blood counts and lung problems I doubt I'd survive very long. However I will talk to my doctors at the Blood & Cancer centre next week and see if they will organise an X-ray just so we know exactly what we are dealing with.

..Ron

A good day.

2011-10-01T13:11:00.010+13:00

Wow! Today is a great day! I woke feeling really good. There's a knock at the door and a courier hands me a package, in it is a stack of this month's NZV8 Magazine copies and a hand written note from the editor Todd Wylie, a long time friend of mine. In this month's editorial he has written a glowing profile on me and my ongoing battle with cancer. Apparently I'm a really nice guy! Sarah cracked up when she read that bit. Apparently living with me will dispel that myth.

Then I get a call from my buddy Glen Clemas and he asks me to review a video he's put together. The video as it turns out is a compilation of motorsport footage of me. He thought it would help keep me motivated, and it will. http://youtu.be/XiKVWzRWuJ0

In reality I don't think it's so much that I'm a nice guy, more that I am surrounded by really sincere and caring friends who I cherish and respect.
I guess it all flows from there. Thanks heaps guys!! ..Ron Scanlan

We have a plan !

2011-09-22T19:21:00.002+12:00

Sarah and I just got back from a long meeting with Dr D'Souza.

First thing discussed was that Adcetris is not available outside the USA at this point in time.
However the drug company is looking at releasing it to market in late October. (ish)

So in the meantime we are going to start palliative chemo with the drug Vinorelbine as soon as next week, depending on when the day clinic can squeeze me in. I'll also be fitted with a PICC ("pick") line in my arm possibly first thing Monday.

PICC lines are great, I had one fitted when I had my stem cell transplant. No more failed cannula insertions and I can have blood samples taken and blood given all through the same line.

He decided to use just the one chemotherapy agent at this point in time is to avoid the possibility of further lung damage. If lung damage occurs we can change to another drug, probably Gemcitabine, or add others to the mix.

The hope is to gain a reasonably long period of remission with the knowledge that should/when I relapse we have Adcetris to fall back on. It having been released worldwide in the interim.

So roll on next week and let the treatment begin! I'm looking forward to waking up one morning and having no itch! Isn't it funny what you focus on.. I've been scratching non stop like a mad man for 18 months now. To have it disappear will be cause for great celebration, despite all the negativity associated with cause.

More posts as things come together.. ..Ron

Compassionate Funding declined.

2011-09-15T13:39:00.003+12:00

My haematologist just phoned and postponed my meeting with him until next week.
The reason being that the drug company no longer will supply Adcetris on compassionate grounds.

Next step is for the medical panel to meet next Wednesday and put an application for exceptional case funding to Pharmac. Word on that should be back late next week or early the following week.

We are not too hopeful as the drug is so expensive, however they may ask for funding for only half a course to reduce costs and increase the chance of approval.

I made sure he understood that Sarah and I believe this drug to be my best hope and that if all else fails we are prepared to fund it ourselves.

Next Thursday we will touch base for an update and I'll be given another couple of units of whole blood as I seem to be slowly winding down energy-wise.

I've been flat out using what energy I do have to finish jobs around the house and workshop.
On Tuesday I did a wheel alignment and suspension setup on a Ferrari F430 Challenge race car.

I had a volunteer doing all the spanner work for me and I just pointed at things and told him what to do :) (A big thank you to Glen Clemas for all his help.)

Today I'm running power cables and conduit out to the new garage. Although I might wait for the weekend to secure all the conduit, as I will have someone to hold the ladder. :)

...Ron

Life in limbo

2011-09-12T15:28:00.007+12:00

Sarah and I met with the haematologist last thursday. We were hoping for some news.
There was none. No word from the drug company at all.

We are hoping that they will supply the drug on compassionate grounds and include me in the clinical trial. My Doctor seemed less positive that this would be the outcome than he was earlier the week before.
There are other avenues.. A process whereby a team of experts on a special panel, apply to pharmac for funding (I feel this to be unlikely to be approved due to the high cost).
Another option may be to pay for the drug ourselves from my life insurance.

I have another meeting with haematology this Thursday for an update.

I've been working with a diabetes nurse to try and rein in my high blood sugar counts that are a direct result of the prednisone. We have been playing around with different balances of the drugs metformin and gliclazide, and seem to have found a happy balance after a few failures.
Net result is I am now putting on weight slowly and have more energy.

For some reason my blood counts have also remained a lot more stable and are not dropping every week like they were. This means that although I'm still quite weak and fatigue with very little exertion, I can do a lot more than I could in previous months. I'm able to go for long walks and perform my day to day tasks without too much discomfort. I can't see me being able to work on cars again for quite some time though.

I had a thoroughly enjoyable day of motor racing last Sunday 4th at the Shelly Bay sprint.
I had made it a goal to be there a couple of months back when I was stuck in a hospital bed.
Thanks to a small team of helpers I was able to get into the car and drive over the course fairly briskly.
I did give myself a bit of a fright on the practice run as I was so unused to the power and speed.

I did two more runs after that, each one faster, before retiring for the day and going home to rest with both myself and the car still intact.
The end result was fourth over-all and 2nd in class. Not bad for a guy that's been driving a hospital bed for most of the last three months! :)

A big "Thank You" goes out to my team of helpers and crew, John Raptis, Mark Scanlan, Jacob Boyd and of course my wife Sarah who supports me in every aspect of my life.

I'll post some video footage up as soon as I find the time to edit it. (We had three cameras mounted on the car for my last run).

..Ron

A small team of helpers was required to help me get in and out of the car
and keep things running smoothly

Lining up ready to run (about to do a "burn out" to warm the tyres)

On the start line with the clock counting down.

Repost of someone elses experience with Adcetris: "My SGN35 experience"

2011-09-02T11:19:00.004+12:00

I found this blog post from a man that was accepted on the SGN35 (aka Adcetris, Brentuximab) clinical trial. It's pretty much the only first hand account of what the drug is capable of that I've found.

My husbands long journey with Hodgkin's: My SGN35 experience

Lines.. Both canulation and those to be read between.

2011-08-31T18:59:00.003+12:00

I'm still here, stuck in this bed. I don't mind so much anymore, home isn't the best place for me anyway.
I've taken advantage of every opportunity or service on offer. My meals are now back to where they were last time I was here for a long stay. I can order lots of extras from the kitchen. However experience had taught me to avoid the hot-dogs, chips and chicken nuggets. I dog would probably send them back.

Tomorrow I am in surgery to have two wisdom teeth removed. This would have cost me a small fortune privately but when in hospital it's free. I just told the doctors that I would be at risk of infection if left in and that I'd need extra blood and platelets for the extraction. They agreed and presto I was booked!

I had a terrible, terrible 24 hours over the period of monday night/tuesday. The doctors had commented that my fevers were resolved and that I must have had an infection that was now gone. I said "well... nooo.. lets just say I've had a couple of convenient headaches whereby I've asked for panadol". They said they needed to know if I was still developing fevers so they could see if the medication worked.

My response to them was that after 18 months of personally monitoring my temperature I could assure them that I would still be running massive fevers if it were not for the fact that I now know the warning signs (once I get to 37C+ will always run a full fever if left unchecked). Apparently my word was not good enough and they asked that I take no panadol for 48 hours. I said they could have 24 hours max as when I run a fever I get very sick with rigor, chills and coughing.

Sure enough I ran three full fevers in that 24 hour period.
During that time my IV cannula stopped working for the third time in three days.
From experience the chances of getting a new line into me while febrile is slim in the extreme.
But still they tried. After-all I have those critical IV antibiotics to be infused (the ones to kill the bugs that are supposed to be giving me the fevers ;)

Two doctors and one senior theatre nurse all tried and failed. There were six failures over a period of nine hours. To say I was over it would be an understatement! The stress of running a fever and having a continuous line of "experts" pushing a bloody great butterfly needle into your arms in the hunt for a vein just wore me out completely.
Finally one doctor thought he had it sorted. He managed to half insert the cannula into a vein in my left arm that I know to be heavily scarred and I told him this.

He suggested that the reason it would only go in half way was because it was against a valve. I said scaring. As soon as the nurse tried to flush it with saline 20 minutes later it hurt like hell and would not flow. I had to tell her twice to stop pushing. Why is it that the younger they are the less they are inclined to believe the patient might actually know something? I told her, once she had stopped trying to blow my elbow up like a balloon, to draw back on the syringe. It wouldn't flow that way either. It was blocked.
Another failure. Two hours later the same Doctor re-appeared and had his last attempt this time under my direction. (I pointed him to the best vein and suggested that maybe hot water in a glove held against the arm would also help. This is std practice on the cancer day ward)

There's no word on my treatment plan as yet, even though I have asked. This actually gives me some hope of getting the new drug. I don't want to get my or anyone else's hopes up because there's no firm reason to support my hunch but I do read body language very well and I've seen and heard enough to realise that there's something happening behind the scenes. They too probably don't want to get my hopes up and are probably working hard in that direction but with no firm answer. I hope they succeed in obtaining it.

I checked the proposed price of the drug online yesterday... around NZ$120,000 for the full treatment, ouch!!

How sick am I ? - They found a new drug!

2011-08-26T22:03:00.002+12:00

I've been here just over a week now, I think I've racked up about eight weeks in hospital in the last three months. I can't even call it a second home.. it's more like my first home.

The constant monitoring of my blood pressure, saturation and heart rate, the bad food, the lack of privacy.. it has all become something I have gotten used to.

Two days ago I awoke to a massive fever, I barely had the energy to press the nurse call button. She arrived and asked what I needed. I said I'd like her to take my "obs" as I was febrile. She hooked me up to the machine that measures heart rate, oxygen saturation and blood pressure. She then reaches up to the wall above my bed and presses the "Emergency" button.

Within seconds I am surrounded by five doctors and four nurses.
My blood pressure was dangerously low and my heart rate was 145bpm.
Apparently when you run a high fever your blood vessels dilate and therefore your blood pressure drops.

Other than the fever I felt OK, I certainly didn't feel so ill that every medical practitioner on the 5th floor should be standing in my cubicle asking me questions and prodding me. Two litres of saline fixed the problem and I'm happy to say that as of tonight my stats are very good and no longer causing concern.

My sister Denise pointed out something I'd never considered.. She said to me "your problem is you don't know how sick you are" and I guess she's right. I've been here a week and other than someone who bumped the emergency button in the shower I'm the only person who has required such attention. This is the cancer ward, everyone here is very sick in one way or another. But if I'm so sick how come I can pop down to the four square for a bottle of lemonade?

And that's the problem.. I just do not know how sick I am. I know I'm certainly not as sick as some of those around me, and for that I am grateful.

Last night I could not sleep, and when I did, I had crazy, surreal dreams. Then to top it off at 4am I had a night sweat. My first in the two and a half years since the bone marrow transplant.
I lay there in my bed soaked to the skin in drenching sweat, my bed clothes soaking wet. I thought to myself.. well this is it, I'm back into full blown Hodgkins Lymphoma.
Things only get worse from here. That bucket list is not going to get ticked off if I'm too sick to get out of hospital. I can't live from one blood transfusion to another.

I knew Dr D'Souza was planning on giving me the results of some of the tests today and I knew it was going to be bad. It was four thirty before he arrived. Sarah arrived shortly after and she was able to hear the news he had for us.

The lymphoma has invaded my bone marrow, however there is little sign of it elsewhere in my chest and abdomen. He explained that this was not entirely a bad thing as it meant that any treatment I underwent would have less to work against and that I could expect my blood production to increase, and therefore my quality of life. The lymphoma tends to hog the space in the bone, leaving little room for the marrow.
Once gone, the marrow takes back the space and blood production improves.

Then came the bombshell.. He said that there was a new drug that had only last week been fast-track approved by the American FDA, that it showed promise and he was going to ask the drug company if they would supply it on compassionate grounds. The drug "Adcetris"' is the first new treatment for Hodgkins Lymphoma in nearly 35 years and it showed promising results.

It was only after he had gone and I'd done some research that I realised just how promising it might be.

Suddenly there's a light back at the end of this tunnel. The battle now will be trying to get hold of some Adcetris.

Meanwhile I'm still on high dose iv antibiotics, antivirals and as of today they started me on an iv anti-fungal (something I had earlier suggested) just to be sure I have no other nasties growing that could kill me once treatment is started.

..Ron

More tests..

2011-08-23T16:00:00.000+12:00

I probably should have mentioned that I'm now up on the 5th floor in the oncology ward. This time the short stay unit lived up to it's name.

Today I had hi-res CT scan of my chest taken and from that the doctors hope to work out just what is causing my cough and lung problems. Is it BOOP or Lymphoma or pneumonia?. I do think it's odd the sometimes my breathing feels completely clear. You wouldn't expect that if it were a degenerative type problem I would have thought. Anyway I should know by later in the week.

Thursday I have yet another bronchoscopy scheduled, where they put a camera up my nose and down inside my lungs and take a look around. Then following that they are going to do another pleural aspiration, where they insert a needle into my back and drain fluid from my chest cavity.

I got outside today for some fresh air and exercise. I walked for about 600M, which is a long way for me these days. Probably the most I've done in 3 months. Not a bad effort but I'm truly exhausted now. Will spend the rest of the day laying on my bed and relaxing/recovering.

...Ron

Stuck here for a wee while yet..

2011-08-22T19:57:00.000+12:00

Well it's now Monday lunch time and I'm still stuck to this hospital bed and I'll be here for a few more days yet.

Initially I was quite frustrated and angry that they had kept me in because I ran a fever on the night I was getting my blood transfusion. They have pumped me full of antibiotics and denied me panadol unless I run a fever. Where as if I take it before my temperature rises, a fever never eventuates.
However I finally got to talk to my haematologist this morning and he has explained his concerns.

He doesn't want to risk missing an opportunist infection, as if I am to have any chemo them I would be defenceless against it and that could prove fatal.
He also agreed that the fevers could just be a symptom of the Hodgkins Lymphoma.
To try and get a better idea he has scheduled a bone marrow biopsy, CT scan and possibly another bronchoscopy for this week. So I'll be here for a few more days yet.

I've had to phone a number of customers and explain my predicament and all have been fully supportive. Still, I hate letting people down.

Ultimately I don't mind being here if it means we find some answers to my tachycardia, anemia, fever etc.. If it means a better quality of life, even short term, it's well worth it.
Mind you so far no one has been able to link any of the symptoms to one thing. That's frustrating. If it could be proved, say for instance, that my bone marrow was compromised by Lymphoma and as a result was working poorly at making red blood cells (and platelets) causing the anemia and the anemia caused the tachycardia, then I would at least have an answer and know that maybe chemotherapy would buy me some quality of life for a period of time.

However there are some serious risks of fatal infections when you have an immune system as weak as mine.

Since starting this posting I have had a bone marrow biopsy. My fourth since I started treatment over 5 years ago. Trust me it doesn't get any easier. I would call it a very intense discomfort. ! For those of you not familiar with the procedure, a device that basically looks like a cork screw but has a hollow tube rather than a spiral, is twisted and pushed into your pelvis and takes a core sample of bone, and blood/marrow.
It's pretty yukky.!!

I'll post again once the results come back.

Xylophone in the rain.

2011-08-19T11:39:00.000+12:00

Saw the strangest thing yesterday while driving to hospital.
Walking along in the rain, was a young man of about 19. Cradled in one arm was a wooden xylophone. In his other hand he held a single mallet which he was using to knock out what I can only guess was some sort of melody.

He seemed incredibly happy, despite the weather. The simplicity of this guy was admirable.
No i-pod for him. He bashed out his own tunes in the rain on one of the coldest days of the year and still managed a beaming smile a mile wide. What are we missing?

I had a crappy night's sleep last night, I ran a high fever all night and I'm still trying to break it now. I'm soaked in sweat. The young female doctor who's been over-seeing me now tells me that because of the fever they want to run some tests and another X-ray.
I pointed out that I had an x-ray yesterday and I run a fever every day. That didn't seem to register with her, so now I'm here for at least the rest of the day getting tests done.

You never know I could have relapsed pneumonia, it doesn't hurt to look I guess.
Well too hot and bothered to write any more.. Think I'll stare at the ceiling for a while and try to cool off.

Bad news, Good news and another night in Gepetto's workshop.

2011-08-18T21:53:00.000+12:00

Aaaah bugger!
We got the news today. The biopsy showed lymphoma.
That means relapse and a new stage to the battle.

To me it's just another hurdle life has thrown up to get around or bulldoze through.

My haematologist, Dr D'Souza broke the news to Sarah and I this afternoon.
I immediately went into problem solving mode and to be honest, other than saying "bugger" to myself it hardly registered. Is that denial? Or is it just because I'm so focused on over-coming obstacles? Either way the result is the same.. crank up the fighting mode and make lots more plans for the future. I'll also be drawing up a new "bucket list" as I've done all the things on the last one.

Fatigue has been an issue for about the last week as my blood counts have again plummeted. (At least we now know why).
Last week I had enough energy to install all the plumbing to a water tank that we have attached to the new garage. (The idea there is that it gives us an emergency gravity fed 1000 litres of water and a supply of water for Sarah's vege garden that won't drain the main tank.)

Today I was the most fatigued I've ever been outside of a hospital. The act of standing up and walking just a few metres had my heart racing and my breathing unable to keep up. Much the same as if anyone else had just done a 100m Olympic sprint. Hands on knees and completely exhausted. (reminds me.. must put my XAUSTD plate on the work van)

I said to Sarah on our way into hospital that I'd probably be admitted overnight as soon as Dr D'Souza took one look at me. Sure enough here I am hooked up to a pump and getting four units of whole blood. I think it was Dr D'Souza's present to me in light of having to break the bad news today. Even the nurses were surprised at four units. I usually get two. Tomorrow and for the next ten days or so I will be feeling supercharged and doing as much as I can while it lasts!

I'm in the so-called "short stay unit". I don't know why they call it that because the last time I was in this dead-end, bed-lined corridor, I was here for a week!
I jokingly said to Sarah that I was having another night in Gepetto's workshop.
Referring to the blog post I wrote in Nov 2009, the last time I was in this ward.
They wheeled me and what are odds?... straight to the same bed as last time!
So far so good, there's been no strange woodworking sounding noises from the bed diagonally opposite.

Well must go and try to sleep. I say "try" as it will take around ten hours to be transfused with four units.That means they should finish around 5am. Non-stop monitoring of my vitals, "Obs" as they call it, will make for a poor nights sleep.. but hey I'm gonna feel great this weekend! I can sense a night out for a Malaysian meal is on the cards!!

...Ron

And still no news..

2011-08-13T14:29:00.001+12:00

I really would have thought that we would have heard what the histology results were by now.
However there's been no news. I'm seeing my haematologist on Thursday, so hopefully I'll find out then.

My blood counts must be at an all time low as I have no energy at all and even moving around the house is becoming an issue.
I had a blood test yesterday, so perhaps I'll get a call next week for a transfusion..

Will post when I get news..

..Ron

No news.. Invigorated

2011-08-05T17:34:00.003+12:00

I saw my haematologist yesterday. Sarah came along with me.
We were expecting the histology results from my biopsy. They weren't back yet.
So I it's another week in limbo.. but to be honest I've already decided it will be good news, so I'm not stressing. Denial is a wonderful tool in these situations!

Invigorate definition, to give vigor to; fill with life and energy; energize.
Today was interesting..
I woke up feeling supercharged. I drew up a list of things I'd like to complete, people to visit etc and ploughed through it. It was great catching up with friends and customers, some I hadn't seen in months. I'm sure some of them were quite surpised to see me up and about so soon.
Earlier this week I was feeling quite down and frustrated at my lack of progress.
I think the word Invigorated best discribes how I'm feeling right now.

I'm thinking it could well be attributed to the huge reduction in the antibiotic dose that I have been on these last nine weeks. I reminded Dr D'Souza yesterday how long it had been since I started on the high dose antibiotics to fight the nocardia infection and that no one had been in touch to advise me when to reduce or to write me a new script as I was about to run out of pills.

He phoned the infectious diseases Doctor, Prof Tim Blackmore and between the two of them came to the conclusion that in light of my constantly diminishing blood counts perhaps reducing from 4 tablets, 3x a day down to 2 tablets twice a day would be a good thing. That's a huge reduction, No wonder I feel so good today!

I'm also thinking I under-estimated just how much the surgery would knock me around. I mean really..
the doctors were concerned I wasn't up to having the surgery, I insisted I was. It would have set even a healthy person back, let alone one who's been through what I have in the last three months! I expect too much of myself. But perhaps that's a good thing? It's what drives me.

On a completely different topic...
I've just landed an enormous shipment of silicone turbo charger hose and have been flat out designing new logos and marketing strategies. It's all very exciting for me. I've had the hoses built to my specs and I firmly believe that I now have the best product available off the shelf in New Zealand.

Now I just have to find the space to store it all !! The mezzanine above my workshop is already bulging at the seams with my normal stock range, and I'm not yet strong enough to be lifting boxes (Nearly 1/2 tonne of new stock)

Fun, fun! ..Ron

Back Home and pleased to be itchy.

2011-07-30T13:05:00.000+12:00

Wow, I never dreamed I'd be back home so soon after surgery.
The surgical team came and visited me yesterday and said they would like to give me another unit of platelets just to make sure I didn't have any problems with the wound bleeding, Then I could go home.
Then one of them said that Dr D'Souza (my haematologist) had said I could have another unit of packed red cells if I wanted it. But I'd then have to stay the night. The choice was easy, I need all the blood I can get! Plus the energy that it gives me is amazing, it leaves me feeling completely well.

So once the platelets and red cells had been administered and the two cannula's removed from my arms..
..Oh nearly forgot.. My skin is so thin from the prednisone that when the nurse pulled the sticky tape off my right wrist a small area of the top layer of skin pulled off instead!! She was so apologetic, it bleed a bit but really I do worse just banging into things myself.
I digress.. So once all was removed I settled in for the night, watched a movie on my laptop then took 1/2 a sleeping pill before falling soundly asleep.

Then at around midnight I was woken by a nurse and told I had to pack up all my stuff as I was being moved to another ward because they wanted my bed. To say I was unimpressed would be an understatement. I said something along the lines of "you have to be @#*&i$G joking!!" or words to that effect. But she wasn't of course and I had to pack up all my gear and wait for an orderly to wheel me down into the bowels of the hospital where a temporary ward had been set up to take on the overflow of patients.

I have to admit, once settled into a fresh bed it wasn't all that bad. One thing that did surprise me was that the nurse that was looking after the five or so patients in the open ward, couldn't actually tell me where I was. I had asked her for instructions on getting there to pass onto Sarah so I could be picked up in the morning. I've said before that the new hospital is a maze of corridors with thousands of rooms, offices and theatres etc. This was was reinforced even more this morning as Sarah and I blindly wandered around looking for doors we could open and hopefully reach the outside world.

Before I left I was once more visited by the team that had performed my biopsy surgery. They were all beaming smiles and very happy, so that's good. I've been in the situation of being given really bad news before by doctors and you can tell by their body language as soon as they enter the room that things aren't good. Today was not like that. They told me I could shower with the dressing on and that after around 5-7 days to just peel it off. I'll wait as long as I can because I heal very slowly.

I got a bit worried this morning.. I didn't feel itchy. I've had an insane itch for the last year and my biggest concern was that it was caused by Hodgkins Lymphoma as it's a known B-symptom.
I have had no other symptoms of lymphoma so that has always been reassuring and I've gone along with the idea/hope that the itch is diabetes or prednisone induced. Of course if I were to stop itching after the enlarged lymph node was removed that would mean lymphoma. So as you can imagine, when I started to itch like mad just a few hours ago I was very pleased.!

I have an appointment with the haematologist on thursday this week whereby I shall ask if we can either reduce or change the antibiotic I am on for the nocardia infection. The antibiotic (Co-Trimoxazole) is playing havoc with my blood counts, which is the primary cause of my fatigue which ultimately slows my recovery. If I felt the way I do today every day I'd be running in the hills in no time! With low blood counts I can barely get off the couch.

I'll update after the haematology appointment. ....

Post Surgery.

2011-07-28T20:29:00.001+12:00

Surgery today went extremely well.
I woke in the recovery ward and thought for a moment that they hadn't done the surgery.

I have no pain and can move about freely. I can even cough without any noticeable discomfort.

Even better news was that the surgeon dropped by later in the day and said everything had gone very well and that the node she removed did not look like what she would expect from lymphoma. Although it will be two weeks before we get the all clear from the histology report. I'm more than mildly excited by this news.

I'm not expecting to be here for very long, maybe a couple of days.

That's less than the "best case" scenario I'd been planning for. Recovery should be just a week or so provided there's no infection or bleeding.

My other good news was that they still had me loaded in the system as having a high energy/high protein diet, so I've been getting all the goodies delivered to me as if I'd never been away and I didn't have to wait four days for the dietitian to authorise it.

Sarah and I, are as you can imagine, are very, very excited at the strong possibility that I am still free from cancer 2 1/2 years down the track. Roll on the magic five years when my chances of relapse are as good as anyone else developing the disease in the first place.

Now on to beat this darn BOOP and reclaim a normal life!

A slight Inconvenience...

2011-07-27T21:30:00.002+12:00

Imagine You are in the following situation..

You are laying in a hospital bed, blood is being pumped into you via tubes that are attached to a line that's been inserted into a vein in your wrist. It's the night before major abdominal surgery to remove an enlarged and possibly cancerous lymph node from your pelvis. You have a resting heart rate of 115, Your blood pressure is low and you can't stand up too quickly for fear of passing out.

Your blood counts are also extremely low and even small amounts of exertion leave you puffing and wheezing. Occasionally you break into a choking cough that lasts for several minutes. A legacy of severe lung damage and on-going pneumonia. The coughing fit leaves you completely exhausted and unable breath let alone speak.
As you lay there you realise you're feeling cold and begin to shiver as the regular evening fever starts to build. None of your illnesses are ultimately curable.

What would be going through your head?

A: My life sucks! What have I done to deserve this?

B: I'm packing myself! I might die on the operating table due to complications from my pneumonia!

C: Oh man I am so sick! I just want to curl up in ball and make the world go away.

D: Think to yourself about just how much of an inconvenience all this is and how you don't really have time for this right now as it's getting in the way of both your work and all the cool stuff you have planned to do.

E: Open your laptop and write your blog.

If you answered D and or E, Then like me, you have either some sort of dis-associative psychological condition or you are just "Over it!"

A,B or C and you are probably the guy in the bed next to me.

I've gotten to the point where it's just "same shit, different day".
I really do consider all of this to be a slight inconvenience and once sorted I'll be straight back into my motorsport projects, working around the house and section, bush walking and enjoying quality time with my wife and friends.

Perhaps I am in denial. I certainly don't have any argument with that. But isn't it the best way to be? No stress, no worries, just forward thinking and setting goals.

This perspective is not new to me, but the conscious realisation that I held it is.
It was while sitting in a hospital bed, in just this situation, but much, much more ill than I am now that the whole concept of "I don't really have time for this right now, I've got stuff to do". Came to be.

If you've not been keeping up with my Blog I'll recap my current situation..

Since undergoing a stem cell transplant in early 2008 as part of my treatment for my ongoing battle with Hodgkins Lymphoma I developed a form of pneumonia whereby the lungs become blocked as a result of inflammation.
The treatment is high dose steroids.They wreck your body by aging it prematurely, they cause type2 diabetes and all that goes with that disease too.
You also put on weight in odd places and loose all muscle tone.
Worst of all is that they suppress and already weakened immune system, leaving me open to all sorts of opportunist bugs.

Twice since Dec 2009 I have also developed severe lung infections causing pneumonia, that has compounded the problem and also nearly killed me.
The last developing in May this year and coming to crisis point during Rally Wairarapa where I was helping out as Sweeper #2.

I knew I was pretty sick all weekend, but hey we had a trained St John Paramedic in the back seat with us. So what could go wrong!?
Admittedly I couldn't walk more than 20 metres without having to stop and rest from the fatigue but I could still drive the Nissan Terrano at pace over the stages and to me that's all that counted.

Monday morning I arrived at home having dropped Sarah, my wife, at her work.
I knew I was in deep trouble when I couldn't get out of the truck. I'd broken into uncontrollable shivering and was in a knotted ball, slumped back in the reclined seat.
I should have called an ambulance, I didn't. Instead I phoned my brother and he helped me to walk the short distance to the house and ultimately the couch. I swallowed two panadol and rode out the fever and rigors over the next two hours.

Now any normal sane person would have then gone to A&E or called their doctor for an urgent appointment. But then I've never claimed to be normal let alone sane!
Nooo.. I had customer orders to fill and a car in the workshop to finish. If I see a doctor now I'll be admitted to hospital on the spot and nothing will get done! ..was my logic.

I did however have enough common sense to make a booking for the very next morning with my GP. The idea being that she would take one look at me, ring the hospital and fast track me through the medical purgatory that is the waiting room at A&E.

It worked. Being an ashen faced, tachycardic, barely breathing patient and staggering into your GP's surgery will get you on the fast bus to hospital every time. But I suggest you don't make a habit of it.

Once there I was immediately put on a bed. My whole body went into shock and from that point on it's pretty much a blur for the next few days.
I had a collapsed lung, a potentially fatal pneumothorax (fluid in the chest cavity that prevents the lungs from inflating) and an equally potentially fatal blood and lung infection from a very rare bacteria that usually resides in soil called nocardia. In severe cases it attacks the heart valves and brain. It has a 50% mortality rate. I was lucky I'm told.

Tubes were inserted into my chest to drain fluid, experts were called in to deal with the hitch-hiking garden bug and much discussion was had as to how to treat me. With little consensus.

The end result was that I had a five week stay courtesy of our wonderful health system.
At the end of that stay I returned home 10 KG's lighter, barely able to walk and still suffering from most of my illness's.

Which brings me to where I am now. Back in a hospital bed awaiting surgery to remove an enlarged lymph node in my lower pelvis. This will be biopsied to ascertain whether it's lymphoma or not. If it is then treatment for my lung problems take a back seat. Any further treatment for lymphoma is palliative, meaning not curative. I've used up all my treatment options and my lung damage (from previous chemo) rules out another stem cell transplant.
So I won't be making too many plans for any retirement at age 65 if I have relapsed.

If the biopsy comes up clean then I can concentrate on working my way through the minefield of health issues associated with my lung condition, (That is after I stop partying!) get back into my life 100%, back into motorsport and ironically spend less time writing my blog.

I mean face it who needs this crap? Certainly not me.. too much to do.
End result is I'll continue to be out of circulation for a while, I'm not expecting to ever be 100% again, but whatever the final figure is I can work with it, and I intend to be their by Christmas. I may even do a little motorsport once my reflexes and strength improve.

In the mean time I'll try to ignore this slight inconvenience to my life.

...Ron

A quick one..

2011-07-23T18:02:00.000+12:00

I was given two units of whole blood last Monday and within a couple of hours I was bouncing off the walls with energy!
My perceived fitness shot up from around 5-7% to 25-30% of what I consider normal.
I went from being a sloth that shuffled around the house and groaned every time I had to get up off the couch one day to jumping in my car and visiting customers in the motor trade and letting them know I'm still alive the next day.

The new blood is slowly being consumed though, I can feel my energy levels waning slightly each day.
I've been walking on the treadmill and the stationary bike every day. Leg strength is improving but I think it will take months and a lower doss of prednisone before I can build any muscle mass.

I managed to get that horrible cold that's going round too, so it's impossible to say how much this cough I currently have is from that or lung problems.

I'm back in hospital on Wednesday 27th for pre-op tests and more blood and platelets.. maybe just platelets.. depends on the counts.
I have my fingers crossed for a minor operation and being back home after a very short stay.

Next post will be from my hospital bed...

...Ron

Sorry for the long break..

2011-07-15T18:30:00.001+12:00

I've been home since July 1st, having convinced the doctors that I was relatively stable, (well at least in physical terms. One should never attempt to define their own mental state ;)
I figured it was better that I was at home eating well and getting exercise than sitting in that hospital bed forever.

So two weeks have passed. I've spent that time very slowly recovering. It's a very, very slow process.
If I was at say .. 5% physical health when I came home, I'm probably now at about 7-8%
Yesterday I ventured outside for the first time and walked with the aid of a stick to the top of our driveway. If you have seen our drive you'd know just how much of an achievement that is! (150M and a steep climb at the end) I did that twice yesterday and once today. It completely exhausts me.

You wouldn't believe it but on the very first time I went on the treadmill after coming home, it went berzerk and stated running at random speeds from the 2kph I set it at to 16kph flat out and the stop button wouldn't work!!. Luckily my sister in-law, Becs, wasn't using her treadmill and I was able to use that.

I must say though that I am very proud of myself. I pulled the broken treadmill apart and had a poke around, decided that it must be a voltage controller circuit problem, found an integrated circuit on the board that looked a bit suspect as it had been getting hot. Ordered one off the internet at the huge cost of 5 for $4 soldered it in and presto! fixed!. I can only imagine what it would have cost to have it fixed by an electronics firm and it was just too good a machine to take to the tip. My school boy basic electronic skills still come in handy even after 35 years.

Anyway...I still cough a lot, mainly from exertion and changes in room temperature. Say walking from a hot to cold room etc. Worst thing is standing up too quickly. Not only do I get dizzy but my heart races then I get puffed and start coughing. If I take it slowly and let my blood pressure equalise by standing still for ten seconds or so then I'm OK. I can even walk for ten minutes on the treadmill without getting out of breath.

How much of my fatigue is from the illness and how much is from the anemia no one knows.
One thing that did come apparent from my five weeks in hospital is that the best specialist Doctors in the region/country also have no clear picture of exactly is wrong with me.

However the CT scan that was performed while I was in there did show that the lymph nodes in my pelvis had grown and to that end I am booked in on the 28th of this month for surgery to have a biopsy performed. This may be done laparoscopically or by a large incision across my stomach. They will decide on the operating table. Recovery time is four days if done laparoscopically or six weeks for full surgery.

From there any further treatment will be decided by the histology result of the biopsy. If it's Lymphoma then once fit enough and the surgery has healed it may be a round of radiation. That again will takes months to recover from. I'm not expecting to be back to reasonable health until late in the year. Hopefully Christmas. If it's not cancerous, then fantastic, we have a party, and I can then concentrate on my lungs, exercise and weening off prednisone. Again hopefully by Christmas.

This coming Monday I'm in hospital for the day getting a blood transfusion.
The last time I had one was one of the worst days I've had. Luckily this time Sarah will be with me.

Bob

2011-06-29T22:07:00.003+12:00

My room here at Wellington hospital is a two bed affair with a dividing curtain for privacy. I have the best bed, it's near the window that has a view over a concrete slab.
There's also more room to accommodate the small collection of chairs that I have managed to pilfer anytime I spot one unattended on the ward. Should I choose to I could just about seat a small group for a seminar.

Speaking of seminars (I'll digress from my story for a minute) The entire time I have been in hospital I have had a constant stream of mainly female medical students come to poke and prod me so they can see and listen to the chest of a man with a complex set of diseases compounded by pneumonia. To be honest I actually enjoy the attention, it's a welcome break from the monotony of staring at these four walls, and lets face it there's not too many men that would turn down the opportunity to have a bevy of attractive young med students running their hands over their body one after the other.

They have a standard appraisal test that they must complete in seven minutes. I'm not allowed to tell them anything about my illness so it's fair on everyone doing the test.
However my favorite bit is when each one checks my pulse and without exception they get this puzzled look on their face. I can't help but say "no you are not wrong"
A resting heart-rate of 120 throws them every time.

I've probably had around thirty of these appraisals now and I'm getting to be a bit of an expert if I may say so myself.
More than one or two of the interns really need to work on their technique. One young female pushed so hard on my stomach while looking for my liver I think she found my spine! another young Asian female intern was so timid that it was a wonder she even found my belly button let alone an enlarged spleen.

Anyway back to my room..
I've had three or four roommates (I hesitate to use the term "bedfellows") since arriving here four weeks ago. Some I have spoken to, others I have ignored, secluded behind my curtain. Then about ten days ago Bob arrived.
Bob is 82 and loves to talk. Bob is also deaf as a post.
He repeats himself constantly and feels the need to declare his status as a "born again Christian" at every opportunity.

Now that's OK, I can choose to ignore him, or I can break the boredom by having a conversation with him about how far down the hallway he is allowed to walk. Of course everything you say has to be said twice... deaf as a post.

Today I got dressed, put on my shoes and headed down to the atrium for a walk.
I stopped at the gift shop and purchased some sugar-free gummy bears before attempting the stairs to the third level. I managed them one at a time and very, very slowly but I made it. Plopping down into one of the big leather couches provided on the landing at the top. I was very proud of myself. I'm sure my legs will be hurting tomorrow.

After a five minute rest I headed back to my ward and my room. Bob was strolling the hallway outside our room in his dressing gown. He spied my little shopping bag of gummy bear treats and followed me into my cubicle. "Are you allowed out of the ward?" he asked sounding a little dejected.
"I don't ask and even if they said no I'd just walk out anyway" I replied. Bob has been told he can't venture past the end of the corridor.
Hindsight is a wonderful thing. I should have guessed beforehand what happened next.

I was sitting on my bed picking out the red gummy bears to be eaten first when Bob appeared around the curtain fully dressed in an old pair of jeans and a Paddington bear duffel coat, several sizes too small. His footwear a pair of well loved slippers.

"Will you show me how to get out of here"? he asked. Now I really wanted no part in this misguided escape attempt, but I'd lit the fire and now Bob was eager to follow my example. I talked him through the two left turns that he needed to get to the lifts.
This alone was no simple feat, it was now becoming clear that Bob is not playing with a full deck of cards and it's little wonder the nurses won't let him out of their sight.

My mind rushes ahead and an image of Bob wandering endlessly, lost in this maze of a hospital enters my head. (I call it "Darth Vader's Death Star" so named because of the endless corridors that seem to run in all directions).
"Umm hangon Bob, I'll walk you to the lifts" I struggle to catch up to this determined geriatric escapee. On the way past the nurses station I tell one of them that I'm just taking Mr Bower for a short walk. The smirk on her face should have been another clue as to what was to follow.

We walked to the lift and I pointed out to Bob, twice, that we were at the orange lifts and on level 5. We entered the lift and I pushed the button for level 2, the atrium where the shops and cafe are located. Bob looked confused. I talked him through the sequence of pushing the buttons and how the floor numbers appeared on the sign above the doors.
He pulled a pen from his paddington coat pocket and wrote "5/2" on the back of his hand. What had I got myself into!

I decided that I'd better escort him on his freedom walk just in case. We get to the atrium and he asks where the cafe is. I point in the direction and he said he would be fine and that I could leave him now. Against my better judgment I returned to the fifth floor. There's a couch near the lifts that I often sit on and watch the goings on down on Riddiford street below. I sat down and pondered my predicament. I decided that if Bob wasn't back in five minutes I'd go looking for him.

I position myself on the couch so I can scan the people exiting the lifts. Five minutes pass and no Bob. Ten minutes pass and still no Bob. Now I'm not too proud to admit that about now I'm fair packing myself. How am I going to explain to the nursing staff that I lost Bob? it's not like he's a stuffed toy you leave on a park bench, despite the Paddington Bear coat he's a fully grown man.

I imagine the whole hospital locked down and teams of security staff hunting the maze of corridors for hapless Bob and finding him in a broom cupboard in the basement. I'm feeling pretty darn stupid about now for ever getting myself into this mess. Then just as I was about to get into one lift to start my search, Bob appears from the doors of another. Going by the beaming smile on his face, he seems pretty proud of himself and his new found freedom. Myself, I was just glad to have him back. He's snoring away contently in the bed next to me as I write this, Blissfully ignorant of the stress he put me through today.

Next time I go out I'll keep my big mouth shut for fear of inciting the whole ward to make a break for freedom.

Goodnight..

28 Days later..

2011-06-27T12:07:00.002+12:00

Today is day 28. I've been here the best part of a month, and yet most of it seems a blur.
Yesterday I was visited by family members who had come up from Christchurch for my Mum's 80th birthday dinner on Saturday night. (The doctors had given me the night off to attend but I was very sick on Saturday, so was unable to go)

It was while talking to my family that Sarah and I laid out the progress I've made in the weeks that have passed and also I came to realisation just how sick I was.
To me I just think "I'm sick, but I'm OK" I just deal with what I have and make the best of it.

It was Sarah that reminded me that in the first few days I had to be spoon fed, was on oxygen and had a tube in my chest. That it took three weeks before I could walk again, and only a couple of days ago that I could shower myself. I think your brain just glosses over all that. If I can open the laptop and type a few words, turn on the TV.. I must be OK.

Yesterday was the first time I had enough courage to do some research on my illness.
I was in for a shock. The bug I picked up, Nocardia, is often fatal and usually causes brain damage, heart valve damage and can be extremely hard to remove. No wonder the doctors were in such a spin.
Curiously once in the lungs it demonstrates exactly the same symptoms as BOOP.
It's entirely possible that I've had the bug since late last year and it's been mimicking BOOP and I've been throwing steroids at it. Lowering my immune systems defences even more.

Fact is no one knows, the Doctors can't say and I can only guess. It was two weeks after starting antibiotics that my lungs were tested for the bug, by then it was gone. The question is was it there in the first place, or just in my chest cavity and blood? I think It was in my lungs personally, but that's just a hunch and if I'm guilty of anything it's that I have been second guessing my illness and it's treatment in the dark for quite some time now. (as have the doctors)

If my pneumonia was from nocardia then my experiment with erythromycin may well have been working and I may have been well on my way to weening off prednisone.
My hope is that they will let me try again once my lungs have recovered from this current illness. Apparently they are a mess with even more scarring and fibrosis which never recovers. Those parts of the lung will no longer function. I can live with that. As long as I can walk in the hills and do moderate exercise I'll be fine.

I may well be home in a couple of days, I'm fairly stable now. However I'd like to have seen an increase in my blood counts and a lower heart rate first. I guess if they aren't going to improve, it doesn't make much difference where I am. Home or hospital bed.
The cotrimoxazole antibiotic that I will need to take for six months to battle the nocardia bug also has a negative effect on my blood counts.

The plan for when I return home is to make the house safe for me from falls. My legs are incredibly weak and an effect of the prednisone is that sometimes they just turn off and I fall like a brick to the ground. We will put a hand rail in the shower and any other mods I might need once I've been back for that first day we should have a better idea.
I certainly won't be going upstairs for a while!

We plan to set up my stationary cycle trainer in the lounge and I will sit on that slowly pedalling while watching a movie, TV etc. Daily walks on the treadmill too. My legs are like bits of string. All the doctors comment on them when they first see them. Just skin and bone, the muscle has been stripped by the steroids and 10kg weight loss since arriving here.

Well, I'm off for a short walk around the corridors..

Yay!

2011-06-23T16:26:00.000+12:00

Just spoke with the head of respiratory, Dr Jones, and he said that if all goes well I should be out of here next Tuesday. Exactly four weeks since being admitted.

One thing that surprised me was that he is in charge of my case and he said it was not until today that he found out that the Nocardia bug had invaded my blood when first admitted. I knew that the day after I was admitted. These doctors obviously don't share their notes!

How bizarre.. Ten minutes ago I had a fleeting visit from a dermatologist I'd asked to see. He grumbled about not usually calling on patients at such short notice, looked at the small ulcer I have on my elbow. Said it was nothing of concern, probably to do with picking and scratching and then left. He was quite abrupt and dismissive.

Move ahead ten minutes and he returns with a completely different attitude.
"I've just had a talk with your doctor and read your notes" He said he was really sorry, no longer believed it was from picking and that with the number of highly unusual medical problems I have it would be prudent to do a biopsy for a number of possible causes including Nocardia and lymphoma.

Isn't it amazing what a difference actually doing your homework does to your work standard. At least he had the decency to apologise.

I have a tummy ache again today, I've only just been given medication for it after asking the nurses for two days. Ask the Doctor and it was here in ten minutes.

Gee I complain a lot!! ;)

Two posts in one day... gosh :)

small improvements..

2011-06-23T11:23:00.000+12:00

Today we reduced the prednisone to 40mg. I have serious doubts as to whether 40mg is enough to continue the reduction in inflammation and repair my lungs. I guess I'll find out in the coming days. If it does then great, otherwise it's back up to 60mg.

Each day I am that little bit better than the day before. Yesterday I showered myself for the first time and only felt a little fatigued from the exercise. I can walk almost normally now, rather than shuffling like an old man. There's still very little strength in my legs and I'm unable to push myself up on the balls of my feet. However that is improving daily.

Both heart rate and blood counts are trending in the right direction. Very, very small improvements, but at least they are going the right way now.

I still have to hound the nurses for just about everything. Yesterday I had an appointment with the dermatologist at 4pm and no one came to pick me up. Called the nurse and she blamed the previous shift for not telling her.

There's been dozens of little incidents like this over the last three weeks. I can only imagine what it would be like for someone that cannot monitor their own treatment. I even have to ask for my meds some days.
One morning someone signed me off as having taken all my medication when I was in fact "nil by mouth" that morning. I gave them a rev about that as it was my prednisone and without that I would have been very sick.

I'm having trouble with an acid stomach at the moment. It started yesterday. Any time I eat anything I get a stomach ache and a feeling like a hot ball of acid in stomach. Told the nurse yesterday. Nothing done about it yet.

Oh well, that's enough complaining for one day.. ;)

Progress..

2011-06-21T19:16:00.000+12:00

Well I've been on 60mg of prednisone now for 5 days. There's been a dramatic improvement in my breathing and sense of well-being (pred would do that anyway).
On day seven we are going to drop down to 40mg and stay there for some time.
I'm suggesting four weeks, no one is disagreeing with me.

I had a really good talk with the head of respiratory, Dr Jones. He's in charge of my case and the overall treatment plan. I said to him that I knew he was very set in his view of my situation and how to treat it but that I had no idea what that plan was.

He really opened up and talked to me in a very relaxed manner, not like the confrontational approach he had when we first met. He listened to what I would like to see happen and did not disagree. I told him I wanted to give erythromycin another chance, that I really needed to get off prednisone before it completely wrecked my body (more than it has already). But that I didn't want to make the mistake of weening too fast. I believed a 6 month taper would be best. I think we are on the same page.

Today I had an ultrasound guided needle inserted into my back in an attempt to get a sample of the fluid that was remaining in a small pocket in my chest. It was 38mm long and they had about ten goes at finding the tiny pocket. In the end they managed to get just a tiny (maybe 1ml) sample of fluid. So that was good, Had they drawn out a quantity of pus I would have been in for surgery and having my chest opened up, drained and washed out. I wouldn't recover from that in a hurry.

I'm now walking down the corridors a couple of times a day. My leg muscles are so atrophied that they hurt from just a few hundred metres of walking. It will be a long road to recovery when it comes to physical fitness. I'm a real physical mess, no muscle mass at all.

I'm getting wiser to the food people, they still screw up at least half my food orders, but I try and add things I know they can do so at least that way I don't go hungry. Today I ordered a chicken salad and instead of contacting me to say "not available, choose something else" they just left it off! Good thing I also added the ingredients to make a bacon and egg sandwich which filled me up nicely by itself. I didn't trust them to make me one, best to just order the ingredients.

I'm coughing a lot, not involuntarily, but because I have a lot of phlegm on my chest.
It sits in my airways and rattles so I have to cough to get it clear. It's annoying but also surprising just how much I cough up. Must drive the guy in the bed next to me crazy. But he doesn't say anything.

Till next time...

Waiting...

2011-06-18T10:26:00.001+12:00

Waiting for progress. I've been in hospital now for two and a half weeks, the last week here at Wellington. Boredom is a problem. I have plenty to do but no inclination to do much.

I could write forever on how bad the food is here, and even after talking to the dietitians and getting a free reign on what I eat. The food that is delivered is seldom what I have ordered. I asked for spaghetti on toast with melted cheese on top yesterday and what was served was a splodge of spaghetti on a plate, two bits of dry white bread and a couple of plastic wrapped cheese singles.

The nursing staff are over worked and I often have to ask for my medications hours after they were scheduled. In the Hutt things were much more relaxed and the staff very attentive.

The doctors can't agree on a treatment plan and won't have a full discussion about me for another week. So not a chance of getting out of here any time soon.

The respiratory doctor is treating me for relapsed BOOP with high dose steroids, std treatment. The Infectious Diseases expert (apparently NZ's top man in his field) believes that it's been the Nocardia bug that's been giving me symptoms that I've mistaken for BOOP and that we should drop the steroids back to a controlling dose (possibly with the erythromycin) and let the antibiotics do their work. He believes that high dose steroids is like putting petrol on the fire and that my already trashed body will be a train wreck if I stay on the pred.

I know this myself. The ID doctor wants me to believe in him and for me to push for the lower dose pred. I certainly can see the logic in what he is saying and I'd agree that it all fits. The bug could well have been with me since late last year or earlier. It's dragged my health down and given me lung problems almost identical to BOOP. By increasing the prednisone dose all I have managed to do is provide a better environment for it to grow.

The respiratory Doc disagrees.. But then nearly all the doctors here have never seen a patient with a massive Nocardia infection, or even a small one. The Infectious Disease man has seen and managed many.
I've devised a simple test.. I'm now on 60mg of pred, if I have relapsed BOOP I should see a huge improvement in my breathing by Monday. If I don't then it's the pneumonia from the Nocardia and I can advise the Docs to taper me back to where I was previously (20mg and backed up by erythromycin).

I just want some sort of functioning body at the end of all this and high dose steroids will rob me of that if used for another year.

I'm finding this all quite frustrating. Today I'm coughing non stop, phlegm is choking me and still no energy. Fits with the ID diagnosis, so there's some bright side to it all.

Had a meeting with a haematologist yesterday. He gave me a good check over and we talked about all my Hodgkins fears, symptoms and the lack of them. His final word was that in his professional opinion he is 99% certain that I am still in remission and that Hodgkins Lymphoma is playing no part in my current health problems. That is very, very good news. (Although Sarah and I decided quite some time ago that we would live life believing that to be the case).

Sunday June 12th

2011-06-12T20:41:00.002+12:00

It's been a good couple of days. My health has now stabilised in so much that each day is much like the one previous. Although I have had periods where I have felt ill, over-all I can't complain. I'm no longer hooked up to oxygen or have cannulas in my arm.

However the point that I have stabilised on is extremely low. I can only walk two or three metres before I need to sit down completely exhausted. My heart racing and my breathing unable to keep up, as if I'd just completed a 100M sprint. Leaning forward, turning and adjusting my pillow, as I have just found out, leads to an only slightly lower level of breathlessness and fatigue.

The problem is I have almost no haemoglobin, and with lungs that aren't processing the oxygen into my blood to start with, what little oxygen that does get in has little chance of hitching a ride to my muscles.

Good news.. My heart valves are in good shape, so that's one less thing to worry about.
CT scan shows a small pocket of air and fluid still in my chest but it's considered small enough to resolve by itself. So hopefully no chest opening and washing out for me. Brain scan revealed nothing. (The doctors drag that old chestnut out every time Ive had one done)

Tomorrow I hopefully get to see the team of specialists and find out the master plan to getting me out of here. I also hope to speak to the dietitian and ask to be put on their special menu as I have now lost 10kg and it's still dropping. The food here is terrible and BOOP has a side effect of turning off your appetite, which doesn't help.
The Hutt hospital dietitian said I could have pizza and chicken! yum.. but then they transferred me to Wellington. I've survived the weekend on chicken salads and coleslaw in a bun. If I see another plate of boiled beans and beef strog I'll throw a very violent, if not brief, tantrum!!

Sarah and I have been blown away by the support offered and given to us by family and friends. In some cases by people that I've only had a tenuous link with, such as customers and acquaintances.
We both thank you all for all that you have done, and offered to do. You have no idea how reassuring it is to know that there's a whole team of people out there covering nearly all the bases for us.

Cheers Guys, you are legends.

Not a well man..

2011-06-08T13:23:00.000+12:00

It's now wednesday, I've been here eight days. The last few days I've been incredibly ill.
The bug I picked up is in my blood and chest cavity, it's usually found in soil, so it's a long way from home!

A team from Infectious Diseases visited me this morning, I guess I'm a curiosity.
They want to transfer me to Wellington Hospital so they can put together a team.

Worst case scenario is that the bug has attacked my heart valves and I will require surgery to repair them.
Also if the fluid in my chest cavity doesn't completely drain and the bug is still hiding in the cavity, They may have to open me up and wash out my chest of any infection.

Scary, scary!!

I do feel a lot better today, but it's relative... I'm still very,very sick.

Will post again when I can. ...Ron

Bubble and swing.

2011-06-04T16:26:00.003+12:00

I've been very naughty and I'm now paying the price.
It's become apparent that some time ago I contracted a bug called "Nocardia".
It's a fairly uncommon bacteria that attacks mainly people with weakened immune systems and patients who have had stem cell transplants. That would be me. Hutt hospital see's around one case of it a year so it's fairly rare.

I ignored the warning signs and assumed that my decreasing health was probably asthma or my BOOP lung disease.
I started running a high grade fever early last week and took paracetamol to break it.
I thought I'd struggle on for a few days as I really wanted to help out at Rally Wairararapa sweeping.
It's a job Sarah I have done for six years now and we thoroughly enjoy it, I didn't want to miss out.
I promised myself (and Sarah) that I would check in with the hospital as soon as we got back.

Unfortunately over the weekend my health plummeted and I found that I was unable to walk more than a few metres without becoming puffed and my heart racing. At night I ran a high fever and soaked the bed in sweat.
However once dosed up on panadol and neurofen I was still physically able to drive the 4WD sweeper vehicle without any problems. In fact some of our stage times were close to that of the slower
tail end cars.

One reassuring aspect was the fact that our role as sweeper required that we had a paramedic with us at all times. He even offered me oxygen should I need it... (The fact that I was so breathless that a fully trained paramdeic was offering me oxygen should have been a big clue I needed attention.)
Once back in Lower Hutt I arranged to see my GP, knowing full well that I needed to be admitted to hospital urgently. Doing it through my GP fast-tracked the process of getting through the emergency department.

Once under the care of the doctors my body just collapsed, I broke into a massive fever and was wracked with chills and rigor. I developed a pain in my chest that was 9 on the pain scale. When I coughed it felt like all my ribs were broken. I almost passed out with each choking cough.

They pumped me full of morphine but that didn't seem to help, it just made me sleepy but still in massive chest pain.

An Xray showed that I have pneumonia and a pneumo thorax, meaning the lung had detached from the chest wall and the cavity behind was full of air and liquid.

That night they inserted a tube into my chest to drain the fluid and air. The tube attaches to a plastic box that collects the fluid and also shows the movement of the air and quantity of fluid collected.
There's a section on the screen that swings up and down with my breathing and shows that the tube is clear and flowing.
On another is a section where the air can bubble through a coloured liquid to show that draining of air from the chest cavity is occurring. The medical staff call this "Bubble and swing"

I was also given three units of whole blood due to my anemia. 135 or below is considered anemic, my reading was 66 upon admission. My health steadily declined that night to the point I was unable to breath without oxygen, talk or even move unaided. It's the closest I've been to dying. Certainly the sickest I've ever been!

I woke the next morning to a fuzzy world of pain and incredible weakness. My chest tube had blocked and was no longer draining anything. Certainly no bubble or swing.
I was taken down to a theatre to have a new tube inserted using ultrasound to get it positioned perfectly.
That failed and so I was taken immediately to the have a CT scan and markers were placed on my chest so they could guide a wire to the correct position of the pneumo thorax cavity. It worked beautifully and we had bubble and swing as soon as they plugged the large silicone hose into the fitting under my left armpit.

The next day was a blur, too weak to push myself up in bed. Too weak to talk on occasion and had Sarah not spoon fed me the little food I could manage to eat, I'd have gone without. Too weak to even hold the spoon up to my mouth.

It's now saturday afternoon and I still have the drain in my chest, it will be in another day or two.
Today was the first time I am able to stand up un-aided, even if it was only to swing from my bed to a guerney so that I could be taken to have yet another Xray. I've had six xrays since tuesday and one CAT scan.

My strength is slowly coming back, I can just manage to push myself up in bed. However my breathing is still in a terrible state and if I cough I become puffed from the effort and the whole thing snow-balls.. hence the need to be on oxygen 24/7.

I've had a constant stream of well-wishers drop by and visit me (Medical ward 5, room 8, Hutt Hospital) which has been great. Looks like I'll be here for a while longer, I'll post a few updates as I find the energy to write more (This has taken three days to write)

Thanks for everyones well wishes and messages of support.!

...Ron

It's been a while..

2011-05-07T15:10:00.002+12:00

So I thought I'd better write an update as to my condition.
I'd gotten quite run down and fatigue was a major issue a few weeks back. The slightest exertion would have me puffing and panting and my heart racing. (it still idles at around 115bpm)

Then one Monday about three weeks ago I just seemed to spark-up and each day since then has seen a small improvement in my stamina and energy levels. The Erythromycin certainly seems to be working in allowing me to use a lower dose of prednisone than would otherwise be required to keep my BOOP in check. I would say that I am certainly on the mend from apparent relapse earlier in the year that caused a steady decline in my health from December till mid April.

I had a meeting with my respiratory Doctor last Thursday afternoon. It was the shortest medical appointment I've ever had. I told him what dose I was administering, for how long, and what my view was on the efficacy of the Erythromycin treatment. I had originally been told that they wanted me to be down to 20mg of Pred as of two weeks ago. I disagreed with this and stayed on a higher level until I was satisfied my body had adjusted. I'm only now just reaching the 22.5mg level.

I asked him if he could see any flaws in my reasoning. He said he agreed with what I was doing. He wrote down what I had said, the dosages of the Erythromycin that I had settled on through my own research, closed his folder. Said that they were all watching my case with great interest, shook my hand and we departed. The whole meeting took only a few minutes.

One bit of bad news was my haemoglobin count. Still waaaaay down at 88, it was 96 last time I checked it. I bet if it were in the normal range above 135 I'd be bouncing off the walls!
Have no idea why it's so low, but I'm hoping that it will improve as the chronic BOOP also dissipates.

I'm still being driven nuts by the constant itch. Life would be great if only I could stop scratching! I've tried herbal teas, lotions, potions and pills. Nothing works. I have some spray I've ordered off the Internet arriving next week. I live in hope!

Sarah and I went on a holiday to Takaka last week. We had a great time, it's a lovely place, however the trip was ruined somewhat by my constant need to scratch.

Wainui Falls, Takaka

Fifty !

2011-04-17T16:49:00.003+12:00

Last thursday 14th April I turned 50.
Having battled for nearly six years to get to fifty, I must say it's a pretty sweet achievement. My goal is now to make sixty. :)

My actual birth day was not really celebrated, I worked a pretty hard day in the workshop building a complex front exhaust pipe for a turbo-charged Mazda RX7. My blood counts are still off the map and te resulting fatigue means I can only work hard for about twenty seconds before I need to rest for around the same amount of time. Hack-sawing through 3" pipe took forever.

I also found that my welding skills have taken a tumble due to the prednisone making my hands shake so badly. In the end I found that if I fired up my new Tig welder and used two hands to hold the torch I could go over the top of the ugly welds and smooth them out.
Where there's a will, there's a way!
The customer was very pleased with the result so that was good.

The other job I had in was V8 powered Ford Escort that I have had a lot to do with since it was first built in the late 1980's. The owner wants to get the car to a point that it can be used on the road and my job was to try and silence the extremely loud exhaust enough that it would pass the 95db noise limit.

This is what I came up with..

I went for a sort of "Maserati" look by bringing the twin pipes together in the middle rather than out by the rear guards. The sound is awesome! The little SVO Ford V8 just sings at the slightest touch of the throttle. I can't wait to see it back on the race track and road again.

Anyway I digress.. So my 50th birthday was fairly much an average day but I did get a lot of pleasure out of still being able to design and fabricate this type of thing even though my body is completely wrung out. As I say to the customers... "it's better than sitting, watching Daytime TV on the couch"!
At the end of the day I am stuck with what I've been dealt.. lung disease, macrocytic anemia, a steroid trashed body, resting heart-rate of 110+ and no muscle tone at all, it all having wasted away due to the steroid increase. But I actually feel well so that means I tend to just plough on and do stuff regardless.

My 50th Birthday Party however was a blast!. We had a good turn-out despite the weather and it rocked on from it's start at 4pm until the last bod fell out the door at around midnight. At one point there was around eight people in the spa pool, one or two having just stripped to their underwear and jumped in after rising to the dare!
About 40-50 people dropped in throughout the evening. It was really great to see everyone and I must make a special mention of the effort my buddy Murray O'Neil made in providing a good quantity of champagne and becoming the impromptu toast-master to see the occasion off on the right foot.

Healthwise my haemoglobin count is still stuck at 95, so no energy and no improvement there. The doctors have gone with the "Scanlan protocol" and I am now taking 800mg of Erythromycin (I chose the dosage) daily and so far it seems to be working. However it won't be until I lower the prednisone dose to around 20mg daily that we see if the BOOP is able to be held in check. I'll reach the 20mg target in two weeks. From there I think we should stay at that level for quite some time just to make sure we don't move too quickly and blow the whole thing with a relapse.
Apparently they had a meeting to discuss my treatment idea, could see no reason not to go with it and are very keen to see if it works as no other studies have been done since the first and only Japanese trial in 1995, which is of course the one I used to justify my treatment plan.

I'm now officially a Type 2 diabetic, another side effect of prednisone. I have a little electronic meter that tests and records my blood sugar levels. I have a pen that pricks my finger and then the meter reads the level from the blood sample. I do this about six times a day. I'll do it less as I see patterns appearing and as I get use to modifying my eating habits (less sugar and carbs) to keep the reading under ten. My highest reading so far has been 23.3! and that's with medication. So who knows how high it's been when I've been on 60mg of pred!.

I've set myself a new goal.. Get my health level back to where it was six months ago. To think that back then I thought I was in bad shape! To be able to get to the top of boulder hill again in 30 minutes with only a little bit of puffing would be great! At the moment I can just manage to walk to the top of our drive. Tim my step-son has modified my mountain bike to fit on a stand so I can gently build up some leg strength. I'll also do some work with some very light weights too to build up my arms.

I'll let you know how I get on... would be much easier if I had some red blood cells. I wonder if wishful thinking will grow some.?

Catch up...

2011-04-03T14:46:00.001+12:00

My health has been a real problem the last few months. Energy levels have ranged between extreme fatigue and just plain exhausted. The blood transfusion I had three weeks ago has done it's dash and my levels are now almost as low as they were. But I'm not the sort of person to let that affect my day to day life so I have just plodded on with my work and taken things as they come.. if not a fair bit slower than usual.

I diagnosed relapsed BOOP a couple of months back and wanted to go for the full 60mg for four weeks treatment but the doctors didn't like that idea (even though it's the gold standard for relapsed BOOP).
They wanted me to reduce down to 20mg by next week when I see the respiratory clinic (another new doctor). I never made it past 30mg.

I've been running a fever morning and night for the last week and have now developed a cough in the last couple of days. My heart rate is still very high and I get dizzy if I stand up too fast.

In my last post I mentioned that I planned to ask the respiratory doctor if I could try the antibiotic Erythromycin as a means of treating my BOOP and weening off prednisone. My haematologist has no objections and has left it up to the respiratory doctor to give the OK. I'll find out next Thursday when I see him.

Now interesting thing... back in September last year I developed a cough and was put on an antibiotic for a week for fear that it could develop into pneumonia with my weakened immune system. The cough cleared up overnight and yet the lab test results showed no infection in my sputum. My GP was at a loss to explain how an antibiotic would have resolved the problem if there were no nasties there in the first place. It sure confused me too! I was reading back through my health notes this morning and guess what that antibiotic was? You guessed it Erythromycin!

So armed with that bit of knowledge I managed to grab five minutes with my #2GP Kyra late on Friday afternoon and she prescribed me a seven day course. Standard dose is 1600mg a day for infection. For BOOP it's 10mg per Kg of body weight. So I'll be cutting the pills in half and taking around 600-800mg a day until next week and monitoring the results.

Because I've been running a fever for the last week it will become immediately obvious if it's working or not. If the fever doesn't go away then I can crank up the dose and treat it as an infection.
(I don't want to start on a high dose because that may affect the efficacy of the drug at the lower dose.)

On March 20th the Wellington Car Club held it's annual Hillclimb on Alexander road. It's one of my favorite events and I hold the record for the fastest car to the top of the hill. On the Saturday night before hand I was woken by my heart pounding erratically in my chest. I was having my first ever episode of atrial fibrillation (erratic heart rhythm). I put on my sports heart-rate monitor and it was unable to get a fixed reading, it swung wildly from 150-226 beats per minute and by the pounding in my chest it probably wasn't doing too bad a job at getting the readings right.

I had two options... wait and see if it settled, or call an ambulance. I decided to wait. Within half an hour I'd drifted off to sleep again and awoke at 7am still alive and ready to race.
Once we got to Mount Victoria and unpacked all the gear ready to race I introduced myself to the ambulance officer from St Johns, who generously offer their services at all our events, and he suggested that he hook me up and perform an ECG on me to be safe.

My resting heart-rate was 156 but it had a normal "sinus rhythm" so we decided to keep an eye on it through the day and if any problems arose he would take me to hospital. Interestingly my heart rate never moved once I was in the car. It was only walking around that increased it. I guess I was more relaxed behind the wheel :) Had it increased significantly while racing I would have retired for the day for safety's sake.
Below is video of one of my runs. It's looks very smooth from this perspective. Top speed would have been around 170kph as it was a marshalls run (where we take the helpers for a run up the hill) and I was driving slightly slower than I would during competition.

I won the event, which was good. My time was .2 second slower than my best time, but that's OK it's still a fairly consistent time and shows I'm not getting any slower. However the competition is getting faster, with some competitors postings some incredibly fast times. I said at prize giving that they were certainly snapping at my heals. It might be time to retire the Evo and get back into the middle of the feild where all the fun and true competition lays.

To that end I'm pouring my efforts into getting my old AE86 Corolla race car (above) put back together.. sort of a 50th birthday present to myself.

I'll post an update on my health in a couple of days... right now my fatigue levels are huge.. I can't even walk around the supermarket without having to rest all the time... eventually going back to the car and laying down.

I've got two big exhaust jobs on this week.. it's going to be interesting getting them done with no energy!.

...Ron

Why I hate needles.. Not a good day.

2011-03-12T18:42:00.001+13:00

It's not that I've developed a phobia or that I reel back in terror when I see one, but after five years of blood tests, cannula insertions and PIC line disasters, let's say I've developed a rather well earned disdain for them.

There was the central line insertion into my neck a few years back that went so horribly wrong that it was only on the third attempt by another doctor that happened to passing the theatre, that the hard plastic tube was finally inserted into a vein. That episode left me unable to move my neck for several days and with massive bruising that lasted weeks. The hospital even had an internal inquiry that resulted in changes to the way the operation was performed.

Then there was PIC line they tried to insert into my bicep in Germany. The 12" long wire went straight through my vein at the elbow and along my bicep under the skin. It was supposed to be inside the vein.
They injected saline into the line to check it and my bicep grew! fail again. Remove line and give up.

When I was younger the veins on my arms used to stand out like a relief map of the Nile Delta.
These days they cower and hide, tiny thin lines barely visible under the skin. Blame that one on countless chemotherapy sessions.

Many people have failed to get a line or even a needle into my veins. Sometime a simple blood test can become an exercise in mental anguish both for me and the person trying to obtain a sample.
I can steel myself for one failure. Two at a pinch but after that I loose my metal and although I just sit and bare it, Internally I'm over it and stressed to the max.

However some really good nurses have done a brilliant job and with some direction from me as to a suitable site have gotten a needle in first time with no bruising or fuss. However during a blood test two weeks ago the nurse dug the needle straight through the vein and then proceeded to push it backwards and forwards about six times hoping for something to start flowing. It didn't and I had a huge black bruise on my arms for a week.

The excellent nurse at Wellington hospital blood test clinic told me this is called "Tissuing" and is the sign of a person that is not very good at what they do. She then took a blood test and hit a vein first pop, leaving just a tiny red speck where the needle entered. As it should be.

Lets move forward to last Thursday and my blood transfusion.
I got to the Cancer day ward at 10am and I figured I'd be there around 2-3 hours.
I knew that time frame was probably not going to accurate when it took nearly an hour before I was finally hooked up to a machine and a cannual inserted into the back of my hand.

It had taken the nurse two goes at putting the line in , but I figured that might be the case and had mentally braced myself for the procedure. I asked the nurse how long it would take to transfuse the two units of red blood cells. The answer was four hours. Bugger, it would be well after three before I got away. I reached for my mobile phone and started to dial my first customer. A little image of a battery flashed on the screen for a second and then it went black. Bugger! I had no way of informing my customers that I would not be able to make it that afternoon. Could the day get worse?

A couple of hours pass by and I need to use the toilet... I unplug the pump unit from the wall and it automatically switches over to battery power. The unit hangs on a wheeled coat-rack looking thing along with the blood bag. I wheel it trough the day ward and into a vacant toilet. As I'm about to leave the cubicle a felt a familiar but uncomfortable sensation in the back of my hand and I panic! It's the horrible feeling of that long cannula needle sliding out of the vein in the back of my wrist. I look down and blood is hosing out of both my hand and the plastic line that now hangs down by the floor.

Blood covers the floor and is pumping from my hand. I reach round for something to stem the flow, a paper towel does the trick. I stick my head out the toilet door look pathetically at the nearest nurse and say "umm" . She escorts me back to my seat and tells me not to worry.
The others patients around me have that look on their faces, like.. "hey wasn't he all hooked up to a machine when he left?". I sit down and wait to be attended to.

The nurse once again attempts to insert a new cannula needle and fails. Then she looks at the needle and says "It's a good thing it didn't go it" It's the wrong type!" Oh great, that really makes me feel better!
She the turns to my other hand and has a poke around there with the correct type of needle. Again she fails and she's been "tissuing" with the needle too.. straight through the vein. It's hurts like a bee sting deep in the under the skin. Mentally I'm a mess, but I put on a brave face.

She returns back to my right hand, digs some more and fails. Then back to the left hand and puts on a tourniquet tightly and starts looking for vein brave enough to pop up. Then one does. massively! The vein she just tissued hasn't sealed yet and the pressure of the tourniquet causes it to blow out. A marble sized blue lump appears on the back of my left hand. She quickly removes the elastic strap and apologises.

At this point I'm almost ready to run screaming from the room, but big boys don't do that. all I can do is scream inside, grit my teeth and sweat profusely. She returns to a spot on my other wrist, up the arm from where the last line was successfully inserted and she finds a vein. The blood flows out into the plastic tube and we both sigh. She puts on extra tape to prevent a repeat of my earlier disaster. I slump down in the lazy-boy chair and try to sleep to the rhythmic whirr of the blood pump. I fail.

By 4:30pm it was all over. The line is flushed and removed and I headed off home. Six and a half hours of my life I'd rather have not had to deal with.

Last night I had two very large handles of Jim Beam Bonded Bourbon and Coke. It's been over five years since the cap came off that bottle. Now I must say that tasted great!
Yesterday would go down as probably one of the least enjoyable days of my life.
But hey that Bourbon was pure magic!

The new blood seems to be helping with the energy levels too. I've spent most of today getting the Evo ready for Mount Vic Hillclimb next Sunday :)

Feeling pretty darn proud of myself...

2011-03-10T17:50:00.001+13:00

My energy levels are at an all time low. I'm back on a high dose on prednisone because of a possible (but mild) relapse of BOOP. (However never one to sit around, I'm still working flat stick and every day is booked with various tasks)

Basically my immune system is in over-drive and there is an inflammatory response in my lungs that causes the minute air passages to block up. By treating with a corticosteroid such as prednisone, my immune system is suppressed and the inflammation reduced.

The steroids have massive side effects, both short and long term. Thinning of the skin, fat build-up in the face and stomach. higher risk of glaucoma and diabetes, bone density loss and possible bone necrosis in the hips etc over a long period of use.

So as you can imagine the doctors want to get me off prednisone if possible. Trouble is that it would appear that every time I go below 20mg a day I go into BOOP relapse. So last month we tried Azathioprine, an immunosuppressive drug often used to avoid rejection in transplants. The problem was that this and other similar drugs are also myelosuppressive ie they damage bone marrow (where blood is made) , something I very little off to start with.

So after my blood counts plummeted following a week long trial of the drug it was decided I would have to stay on prednisone indefinitely as I wouldn't survive very long with no marrow!

Not one to give in lightly, That got me on a hunt for a drug/ treatment regime that was not going to wipe out my bone marrow. I found a medical paper that mentioned a study in 1995 by a group of Japanese doctors who had successfully treated six BOOP patients with a low dose of the antibiotic Erythromycin.

Apparently there is an anti-inflammatory side effect to the drug even in relatively low doses.
I printed off just one paragraph of the study, just enough to get the haematologist interested enough to look into it. He accepted it just might work and has promised to discuss it with his respiratory colleagues and phone me back.

If they accept my treatment plan, and so far I can't see what we have to loose with no other options, I will be over the moon!

Imagine that. Interrupting the senior haematologist as he tells you there are no drugs that will treat your disease without killing you, and I say while passing him my fndings "have you considered Erythromycin ?" and he pauses, reads my document and say .."that might just work". Priceless!!.

Fingers crossed for the go ahead and positive outcome. I'm feeling pretty darn proud of myself right now. So much so that I'm about to celebrate with a Bourbon and Coke. Something I haven't had in a number of years. Tomorrow I'm in for a blood transfusion anyway so it's not like I can do any permanent harm! :)

Cheers! ...Ron

Better by the day.

2011-02-28T13:50:00.002+13:00

This is my fourth day on 60mg of prednisone for relapsed BOOP.

My resting heart-rate is slowly coming down. It's no longer screaming along at 125 beats per minute.
Sitting here at my computer it seems to vary between 82 and 105, I'm guessing that it will continue to slowly drop it's window down to something approaching 70-90 over the coming week as my blood levels approach normal again.

I can only assume that my haemoglobin levels are are rising to normal as my heart-rate drops.
I might get a blood test done this week just to confirm.

The only other problem I have to work on now is this darn itch. It's keeping me awake at night and even invades my dreams. It torments me in both my waking and sleeping states.
I've spent countless hours researching what could be causing it and it comes down to four possible things. All are long shots..

1: Anemia: Long shot, as I don't think I've been anemic for as long as I've had the itch.

2: Type 2 Diabetes. Possible due to the prednisone and tests that show I'm in the danger zone. But no other diabetes symptoms.

3: Long term use of prednisone causing a rebound effect and skin damage. Long shot. Only vague anecdotal evidence to support the theory. Itch is unaffected by prednisone which is the standard treatment for skin itch. (Pruritus)

4: Hodgkins Lymphoma. Classic symptom of HL seen in around 30% of patients. However I have no other HL symptoms. However I do have enlarged but dormant lymph nodes in my pelvis. It doesn't feel like the typical HL itch and it seems to respond to various lotions, potions and creams at a topical level.

There is just one person that claims to have found a remedy for the intractable itching from Hodgkins Lymphoma. Imagine that.. millions of useless links in Google and just by chance I found the single paragraph where a sufferer posted about her success after making a tea from the flower of the Tri-colour Viola flower. I've ordered a quality from a place in the US and shall see if it works at a systemic level. Nothing ventured...

...Ron

The return of the BOOP.

2011-02-25T14:53:00.000+13:00

I don't think I've ever been so happy to be so sick.

Once I'd been informed that I had macrocytic anemia and that it had been brewing for several weeks, a lot of things started to make sense. The tachycardia, the fever, the fatigue. All are symptoms of lung disease, but together and without an increase in my white cell counts, they are not typical of lymphoma. Phew!

I've just returned from a visit with my #2 GP Kyra Jones and although she is cautious about my decision to run with 60mg of prednisone until I see my haematologist on March 10th, she didn't exactly say no either. (She freely admits that there's not a lot of people that know much about BOOP, least of all her.)

There's no point in trying to treat a BOOP relapse with 40mg, I tried that last month and it didn't work. I wanted to go with 60mg then but the respiratory doctor insisted on 40mg. I think had he looked at the blood work he would not have gone down that route.

Oh well... It's sorted now. I should learn to go with my gut feelings. I knew I had relapsed in January, Knew I should have gone with 60mg.. but at least it's not lymphoma, and my marrow is probably fine.
I'll get my strength back over the next few weeks and then I can start back on the path to weening off pred all over again.

At least it hasn't ended with me in hospital like it did last time no one would listen.

Back to the Doctor's

2011-02-24T16:31:00.002+13:00

Woke this morning with a racing heart. 130bpm just sitting at my desk. A quick check of my temperature revealed that I was running a low grade fever of 38C. Any form of movement had me breaking out in a sweat and my heart rate soaring to a galloping 160. Bugger!

I phoned Kyra and left a message, she phoned back straight away. She said that the low haemoglobin had been there since before I started on the Azathioprine. Double bugger!! That explained the lack of energy over the Xmas break. Why on earth had my respiratory doctor not noted the low count when I saw him a few weeks back?? Surely the lung diffusion rates were meaningless unless he considered them alongside my blood counts and my blood's ability to actually absorb oxygen? Grrr.

I've got another appointment tomorrow with Kyra for a check over. Could be lung infection.. I live in hope.
It would appear that if it were Lymphoma related I'd expect to see an increase in my white cell count, the white cells crowd out the red cells and cause anemia. I don't think that's the case. Another possibility would be bone marrow infiltration of lymphoma... A bone marrow biopsy would show that.. again I have my doubts but will have to wait and see.

Meantime I've been told to stop the Azathioprine immediately (which is what I wanted when I phoned Kyra) and we shall look at the blood counts etc again when I see the Haematologist on March 10th.
I'll have to crank the prednisone back up. But I guess it's better the devil you know...

Annoyingly I have heaps of work booked for next week. I don't like to tell people I'm too sick to fix their cars because often that's the last you hear from them. Might be time to hire a spanner-hand to do the work I can't do (which is almost every thing right now).

Another post after tomorrow's GP visit. :)

Hmmm..

2011-02-23T13:56:00.002+13:00

It almost feels wrong to be posting about my state of health at a time of such devastation in Christchurch. My grumbling aches and pains are nothing compared to pain felt by those who have lived through such a terrifying experience or who have been injured or lost loved ones.
My heart goes out to them.

I did however receive a phone call last night from my #2 GP, Kyra Jones. She fills in for my usual GP, Dr Stu, on the days he has off. Kyra is very thorough and seems to enjoy her work. She usually phones in the evening following a visit and updates me with test results and her thoughts on what may be ailing me.
Last night she called to say that my blood tests had shown that almost everything was normal (relative to me) except my haemoglobin count which was well down at 95, when normal range is 135-170.

This would explain the lack of energy and fatigue. There is just not enough oxygen getting into my blood. It also explain the tachycardia (rapid heart rate). However I've never looked at the haemoglobin levels in my previous blood tests so I don't know if this a new thing brought on by the new Azathioprine drug which is myelosuppressive (damaging to bone marrow) or it's a result of a steady decline in the overall state of my already fragile bone marrow.

I've always know my bone marrow is shot (read F&#ked), it never recovered after my first lick of chemo back in 2005. Add to that dozens of sessions of ABVD chemo, the salvage chemo, the conditioning chemo before the stem cell transplant, the high dose chemo for the STC and you can see why my platelets never get much above 50 (normal 150-400) these days. However if the low haemoglobin count is because of Hodgkin's lymphoma infiltration. There's nothing we can do to fix that.

So fingers crossed that the fatigue is just a fact of life, that the low blood count is a new thing and can be fixed with regular transfusions and or drugs until I'm off the immunosuppressive medication in a year or so. I've emailed Kyra asking her to review the last few blood tests and get back to me.

This can't be right?

2011-02-17T17:34:00.003+13:00

My heart rate just won't drop. It's 110bpm just sitting here typing.
My breathing is pretty good so I'm slowly coming to the conclusion that maybe it's not lung related.
I emailed my respiratory doctor and asked him what he thought. He had no ideas, but suggested I get an ECG.

One symptom of tachycardia that I have is becoming breathless with little effort which is inversely what I'd expect from BOOP. ie heart racing due to breathlessness. Maybe I'm looking at this from the wrong end?. The problems with my heart not my lungs. ?

I'm trying to get an appointment for an ECG as soon as I can. I was going going to go for a walk tonight, but from what I've been reading that's probably not a good idea. This isn't going to get better with exercise. In fact it could be fatal.

Cortisol, thyroid and adrenaline levels will need to checked too. Shall ask for those when I get to see a doctor.

To say I'm a little frustrated would be an understatement! I just want to be well and get out and do more without breaking out in a sweat, fatigue and dizziness. Mentally my mind keeps telling me I can still run, cycle and do anything. Then I pick up a box or walk up a short flight of stairs and reality hits.

Fingers crossed for a simple fix. Yeah right!! ...Ron :)

Ohh the new garage is progressing again after a week or so of no activity.
Both my architect/builder and the engineer/labourer are on extended holidays for another week so I took the liberty of getting a team of concrete placers in to do the pour of the slab today. Took them just 45 minutes. (You know there's a down-turn in the economy when your builder is an architect and the labourer is an engineer).
Once it's cured and the builder returns from holiday it should progress rapidly from there.

I hate drugs!

2011-02-14T10:00:00.001+13:00

This new drug Azathioprine (Imuran) really knocks me around. I'm only on half the usual dose so we can evaluate what effect it has on my blood counts, but even so it's making me incredibly fatigued.
I spent a lot of Sunday sleeping on the couch and the rest of the time fighting to stay awake.

That's a real pain as I was hoping that it would give me a hassle-free way of weening off prednisone.
Bugger! However I still managed to go to a pistol club and fire a handgun for the first time, then fix a friends Camaro in the evening, so the day was not a total write-off

My resting heart rate is still all over the place. Ironically I got excited yesterday when it dropped to 70bpm for a while, but today it's back up to 120 again.

Woke this morning feeling like crap, and running a slight fever. Now sweating it out as I get myself organised to do a full days work. Shall see if I can muster some energy and push through this fatigue.

...Ron

And another update...

2011-02-09T18:26:00.000+13:00

Yesterday I met with the respiratory Doctor and we discussed my current situation.
He agreed that my diagnosis of BOOP relapse was the most likely cause of my drop in health.
Yay! I'm not completely paranoid after-all!!

I've lost 4kg in weight over the last two weeks, sadly none of it off my prednisone enlarged stomach! :(
My heart rate still rests at a rather rapid 105BPM, which is concerning, but I've borrowed a sports heart rate monitor and will be keeping an eye on it from now on. It could have been high for months, who knows.

The plan is to get me weened off this darn prednisone as soon as we can. To that end we have started on Azathioprine, an immunosuppressant that should suppress the inflamation in my lungs like the pred does but without quite as many side-effects. One likely side-effect however is bone marrow and platelet suppression, something I already suffer from so we are looking at regular blood testing to keep an eye on my blood counts. (My platelet count this week is 49, normal is 300-400, so there's not much room to move before I start leaking!)

I was pleased that the respiratory Doctor managed to get hold of my Haematologist on the phone while I was with him and the treatment plan was discussed by them both. Haematology will keep an eye out for my bi-weekly blood test results and contact me if there's a problem.
If my counts look safe in two weeks time we shall double the dose of Azathioprine and start reducing the prednisone.

From there we just have to hope that those pesky nodes in my pelvis stay dormant and don't wake up once I ween off steroids. Should take about a little under a year to ween off. Roll on next summer!

Sarah has me on a no wheat, no sugar diet to see if I have a yeast imbalance causing my skin itch. So far no change. I've come to the conclusion that sugar is the drug for the masses, It's in everything!!. I could hardly find a single item in the supermarket that did not contain it. One has to ask why do the manufacturers think they need to put sugar in mint sauce?? It's vinegar and mint FFS!! and that's just the start of it.

Not much else to report.. haven't shaved in a week, look like a scruff... don't care..

Cheers! ..Ron

BOOP Relapse? and some fun behind the wheel.

2011-02-02T17:52:00.004+13:00

I'd mentioned in earlier posts that I believed my BOOP had relapsed. I'd increased my daily dose of Prednisone to 40mg for a week, then 30mg for another week and then down to 20mg which is where I am now.

However I recently noticed that I was feeling more fatigued than usual, was running a low grade fever in the morning and my resting heart rate was a rapid 120 beats per minute, nearly twice the normal rate.

Looks like I should have gone for a higher starting dose last month, 60mg would have been better.
It's a week before I see the respiratory doctor and have another lung function test, so in that time I'll run with the high 60mg dose and see what the lung function tests tell us.

I just can't sit and wait as the longer I leave it the more chance of heart problems and further lung damage.

Oddly enough I feel quite well.

Last weekend I entered the Wallaceville hillclimb in Upper Hutt. It's an event that is primarily run for classic type cars, but they will let anyone enter unless it's a four wheel drive car. This meant I couldn't enter the Evo. I'm told it's because the 4WD's would win and take all the fun out of it for the guys further down the field. Somehow I think the organisers have missed the whole point of building a high powered car capable of winning hillclimbs.. but never mind, it's their event and as such they can make up the rules.

In light of that I was asked by my good friend Alf Hole if I would like to share the driving duties in his little 1973 1200 Datsun. It's got over 400 less horse power than the Evo and was running on some very old and dried out road tyres. It was going to be fun!!

And fun it was! I managed to fling the little Datsun over the 1.5km course in a time that was 3.4 seconds faster than the owner could manage, winning it's class and taking home the trophy for 3rd over-all in the index trophy category. This is worked out by the age of the car, the power and the times posted.
So a really good day's motorsport, great result and a huge amount of fun!! Roll on next year!
I must say it's a lot less stressful than driving the Evo, where the pressure is on to win outright and the speeds are so much higher.

CT scan shows no significant changes.

2011-01-13T18:16:00.000+13:00

I just got back from my appointment with the haematologist. Dr D'Souza is away on holiday so I met with one of the registrars. He was very good and seemed to know a lot about my respiratory disease as well, so that helped build my confidence in him.

The written report for Monday's CT scan shows that none of the enlarged lymph nodes that appear on previous scans have changed significantly. Some have even shrunk slightly.
What this means is that it's "status Quo" for now. It's been eight months since I was advised of several enlarged lymph nodes in my pelvic region. At that time the doctors were very grim and suggested that I had relapsed and that there were very few treatment options available to me.

With no change in such a long period of time, it's fairly safe to say that the nodes are indolent and may not develop into anything significant at all. Or if they do it will be very slowly. This opens up other treatment options in the future should they be required.

So once again it's good news. It would have been better if there were no signs of any enlarged nodes, and everything had shrunk away, but the fact that nothing is growing in a hurry is pretty darn good ! I'll take that with open arms. I think after 8 months I might even use the word "Dormant".
Just how much of that is attributable to the masking effect of prednisone I don't know, but it seems odd that nodes could grow while under the highest dose of pred a year ago and then be held in check by lower doses now.

It's almost two years since I had the Stem Cell Transplant (otherwise known as a Bone Marrow Transplant). That's a significant milestone. Time to celebrate. I'll have one beer. :)

Cheers! ...Ron

Squeaky wheel..

2011-01-07T16:35:00.002+13:00

If there is one thing that I have learned from five years of dealings with the public health service in this country (and it possibly relates to any country for that matter) and that is that the squeaky wheel gets the oil.
If you feel you have somehow dropped off the radar or are waiting too long for a referral, an appointment, surgery or a scan. Say so! Don't just sit around and presume that someone is on to it. They probably aren't. People most certainly have died waiting for treatment in this country.

On Wednesday after my lung function tests I physically visited the Blood and Cancer Centre reception and voiced my concerns about the three month wait to see my Haematologist, and the overdue CT scan.

I was immediately booked in to see someone in the Haematology dept next Thursday, and by 8am the next day the radiology dept had phoned me, apologised and scheduled my CT scan for next Monday afternoon, just five days after asking. The system works, you just need to know that it needs a bit of a push start sometimes.

I'll post once I know the results of the CT. Fingers crossed for no further growth of the enlarged lymph nodes discovered in my pelvis on the last scans.. Or better still nothing to see at all !! :)

..Ron

Lung Function much improved!

2011-01-05T19:01:00.005+13:00

Well it certainly pays to take responsibility for your health and treatment.
The decision to nearly triple my prednisone last week when I noticed a sudden decline in my health and the onset of a low grade fever was the right thing to do.

Today I had a lung function test and all parameters were greatly improved over the previous test, including the all important diffusion test, which measures how well the lungs actually get oxygen into the blood. (to the respiratory techies out there..yeah I know I've over simplified that description)

Sarah and I have done the hard walk (read "grunt") to the top of our hill four times in the last five days.
It's part of the Belmont regional park network of tracks and it's a thirty minute steep walk to the top gate.
Each time I've done it it's become easier. Must be doing wonders for my heart and lungs.

I've now got a new respiratory doctor, the previous one has now moved on to another field of medicine elsewhere in the hospital. I brought the new one up to speed today and asked if he agreed with my emergency prednisone regime. He did.
What is really good is that, like me, he doesn't like me being on prednisone for so long and agrees that I need to be off it. To that end he is going to see if there is an alternative treatment we can try.

I popped up to the Blood and Cancer center after my respiratory appointment and prepared to thump the counter over my non-booked CT scan and three month delay in seeing the haematologist. I didn't have to thump.
The young lady behind the counter was most helpful, found me an appointment for next week and promised to chase up the radiology people about my scan and phone me tomorrow.

What's good there is that I can now book a private CT san if I have to and have the results back in time for next weeks appointment. It's a win-win situation. I just want to know one way or another if this darn skin itch is Hodgkins or something else. Either way I can focus on either getting treatment or relaxing.

..Ron

Wedding :) ...Relapsed BOOP ?

2010-12-31T14:57:00.002+13:00

The weather turned on a fantastic day for our wedding on Saturday 18th Dec.
The morning had started with drizzle and overcast, but by midday the sun was out and stayed that way all day until the rain set in at the end of the evening once people were leaving.

We had a catered "After Party" for 65 friends and family, which went off really well.
Sarah and I found it hard to spread ourselves around the many guests and a few we only saw as they were leaving. Those I have spoken to since have all said they had a great time so I'm guessing we didn't offend anyone by not getting to talk with them all. :)

A couple of pics from the day below.. Others here... Picasa web album

Healthwise I'm in a real quandary at the moment. I started running a constant low grade fever a week ago and developed an asthmatic cough. In light of the reduced lung function from my last test it was a reasonable assumption that my BOOP/COP had relapsed. I tripled my dose of prednisone and the fever stopped the next day.
Interestingly the asthmatic cough is made worse by taking Seratide which is a combination of a steroid preventative and a bronchodilator designed to treat asthma. I've switched over to Flixotide which has just the steroid preventer and the cough is much better.

I have an appointment with the respiratory doctor, and lung function tests on Wednesday 5th Jan (early next week) so I'll find out then if it's a relapse of the BOOP lung inflammation. If it is, it looks like I'll be on the dreaded prednisone for a lot longer, if not forever. sigh.

On top of the possible BOOP relapse I've developed the most annoying skin itch (pruritus). It's been getting slowly worse over the last six months until now it's almost unbearable. It's worse at night as the steroids wear off. I used to have a similar itch when my Hodgkins Lymphoma was active. So that's got me worried too. There are no other Hodgkins symptoms, however prednisone could well be masking them. I'm not scheduled to see the haematologist until the middle of march, and I've seen no sign of an appointment for the CT scan, despite emailing the haematologist and reminding him.

So it's somewhat frustrating to start 2011 with possible relapses of both BOOP and Lymphoma hanging over my head. I'll post an update next week after I've had the lung function tests.

Despite everything I'm determined that 2011 will be another awesome year like 2010. After-all I'm still here 6 years after starting treatment, and I'm still managing to live a full and active life. That's gotta be a good thing!

Happy New Year and all the best for 2011 !! ...Ron

Just a week to go..

2010-12-12T14:24:00.001+13:00

It's now only seven days until the wedding. Most people would expect Sarah and I to be getting fairly excited about now.. or anxious, but after being together for such a long time, we aren't expecting a huge change in our actual relationship, just it's status.

We are looking forward to the big day, don't get me wrong. But here we are on a hot Sunday afternoon just seven days out and we both seem more concerned about keeping cool and having a lazy day in the shade than we are concerned about next Saturday's big event. Maybe once things start to wind up later in the week the nerves will kick in :)

It's been a month since I last posted, sorry about that. There's been a lot of new work done around the house. The biggest of which was the construction of a retaining wall and fence to support the steep edge of the driveway and give some measure of safety to people walking along the drive. Previously anyone that tripped off the edge would have a steep 45 degree tumble of about 50 metres before they stopped.

Here's some before and after pics...

Most of the work was done by a friend of mine who volunteered his time, his digger and his truck for a fraction of what it would have cost to do normally. Thanks JP !!

Healthwise I'm feeling pretty good. Just one worrying symptom that I would like to have an answer for. I have an annoying skin itch, mainly at night. This can be a "B" symptom of Hodgkins Lymphoma. Or it could just be side effect of prednisone (although it's rare). I've been waiting several months now for another CT scan to be performed. So far there's no sign of it being scheduled any time soon. I may just pay to have one done privately so I can put my fears to rest.

I had another lung function test last week and the doctor was concerned that the results were worse than previous (which were really good). I found that a little odd as my breathing these days is excellant when compared to what it was last year. I have no cough or difficulty breathing. However I had stopped taking my steroid inhaler because of the improvement and that may explain the drop in the readings.
My respiratory doctor had not prescribed the inhaler, it was something I'd asked my GP to prescribe last year. So it never occurred to me that it may have been responsible for a large degree of the overall improvement in my lung function. I'm back on it again now. :)

I've stopped reducing my prednisone dosage too. I've leveled it out at 16mg a day and will stick with that until my lung functions have stabilised over several months of testing.

There's nothing happening on the motorsport front. Port road sprint kicks off the 2011 year for me and that's not till late January. I've set myself a goal of entering the Dunlop Targa in either 2011 or 2012 depending on finances. I feel I need to give it another crack with good health and taking in what we learned from last time. When you consider that I was able to run in the top five on several stages, and winning one, even with the car badly damaged, running on low boost (low power) and with me incredibly ill with pneumonia. You can see why I feel I need to give it another go!

Lots of interesting projects coming through the workshop.. A Galant VR4 RS for exhaust and intercooler work. The owner was so impressed (his grin was a mile wide) with the work I've done so far that he wants me to complete the restoration of the whole car after New Year.
I have an Evo 4 in for the installation of a replacement Evo5 engine, plus a number of other jobs waiting in the wings.. Doesn't look like I'll be having a very long break over the Christmas period!

Have a great Christmas and all the best for 2011 !! ..Ron

Duncan McKenzie sealed sprint series in the bag!

2010-11-13T15:37:00.001+13:00

I'd pretty much written off any chance of reclaiming the Duncan McKenzie trophy this year as I had missed two of the seven rounds due to the Evo being in the panel shop. However as luck would have it my competition also missed a round or two and also fell outside the points table on a couple of events.

The end result is that after spinning and coming second at Shelly Bay, and then winning at both Port road sprint last month and the Admiral road Hillclimb last weekend, I have now clinched the series for the fifth time, I believe to this be the first time in the fifty or so years the series has been running.
I'm very proud of this achievement and the fact that I'm still able to post very fast times despite the passing of time and a pretty worn out body. ;)

Here's a link to the Admiral road run down from Motorsport Central .
..and here's the Port road article..

Below is video footage of one of my runs at Admiral road. Pretty darn quick if you ask me!

Health-wise I'm OK.. would be a lot happier if I didn't have itchy skin and a slight ache in my left side pelvis. Both of which unnerve me as they could possibly relate to Hodgkin's Lymphoma. Could also be nothing at all.. I have another CT scan scheduled before Christmas, so that will remove the uncertainty.

Still weening off the prednisone. It gets a lot more difficult at these lower levels. My adrenal glands will have atrophied and my body lets me know pretty quickly if it's missing the cortisol it needs.
Hence I suffer all manner of aches and pains as I lower the dose. Roll on mid 2012 when I'll finally be off them!!

...Ron

Why I should never forget to take my prednisone...

2010-11-04T16:15:00.001+13:00

This morning I forgot to take my pred.

It was about 11am before I realised it and I was out at the time. I wasn't completely sure I'd forgotten but I figured that if I got a couple of aches and pains I'd know for sure and then I'd take it when I got home.Bzzzzztt!! WRONG!

By 11:30am I was racked in pain and my legs were not working properly due to the pain spasms in my hips. I barely made it home, driving was very difficult.
I fell in the door, grabbed my 10mg dose of prednisone as I passed the kitchen and then downed some paracetamol and nurofen as I collapsed into bed shivering and writhing in agony.

Two hours later I was finally able to crawl out of bed. It's now five hours since the pain started and I'm still feeling nauseous and weak.

I will not do that again. Next time if I think I have forgotten I will just take the them anyway. It's better to double dose than live through that nightmare again.

and I used to say "a little bit of pain never hurt anybody" obviously I'll need to re-think that one.

Right! No time to lull about being sick... I'm off to save Apollo 13 from imminent doom.. ;) See link below)

http://www.downstage.co.nz/index.php?page=shows&id=105

Mi Goreng, Marriage, Motorsport and medicine.

2010-10-26T16:17:00.002+13:00

OK firstly a word to the wise: Don't try and eat 2 minute noodles and write a blog wearing reading glasses at the same time. You only end up trying to type one handed and drip noodles down your clean shirt while struggling to see through steamed up lenses!

A combination of age and steroids has deteriorated my eye sight quite rapidly in the last year. I now have to wear reading glasses to use the computer despite a 19" screen, and I haven't been able to read a menu at a restaurant in quite some time. My long range vision is still OK, but if I wear my glasses there's a definite improvement.

Anyway.. On to more important things! On October the sixth, while on holiday in Taranaki I (finally) asked Sarah to marry me. It's something I'd been planning for quite some time, but was waiting for my health to improve before taking the plunge. There was little fear that she would say no as she has been making subtle remarks and rumblings for a few years now. However she really didn't expect me to ask and was pleasantly surprised (read stunned) when I asked her as we lay in bed enjoying the Lake view from the little private chalet we were staying at on the shores of Lake Rotorangi, about 20km out of Eltham.

Sarah had spotted a beautiful little diamond ring in an antique store in Eltham the day previous and showed an interest in it but decided she couldn't justify the expense as an item of jewelery.

So for me that made choosing the ring easy :) We just stopped off on the way home and I purchased it.

We are planning a quiet wedding at home on December 18th attended by close family, followed by a party that evening for extended family and friends in which we shall celebrate the new house, my good health and our new life.

As mentioned in my last post I've gotten back into my motorsport and last weekend I drove the Evo at the second round of the Port Road sealed sprint at Seaview. This is an event that I have done quite well at in the past, but have also done terribly at too! Crashing back in 1995, getting hopelessly lost on several runs a few years back and doing half the track twice... not good if you want to post a low time!

I first won it in 2006 and have won it a couple of times since including last weekend's event.
However my times, like at Shelly Bay were down on what I've been capable of in previous years. I put this down to a heightened sense of self-preservation and a little bit of rustiness (if there is such a word).

Back in 2008 when I was doing a lot of competing around the country I was right at home with the 320kw that the car produces on high boost and I set a number of records behind the wheel.

Last weekend the sheer brutish power of the car scared the pants off me and I never really felt comfortable. Perhaps with more time behind the wheel I'll get back my confidence. I hope so.

On the health front I'm pretty good. Well today I feel great. I have a couple of small niggles that remind me that there's a small lymph node in my left side pelvis that is sitting possibly dormant but ready to burst into life should it choose to. I get a few aches from that region every now and then and that unsettles me. My skin feels prickly/itchy all the time, but it's not a deep seated itch like typically occurs with Hodgkins. It's just annoying enough to remind you that something might not be right. However I feel nothing like as bad as when I definitely have active disease, so I just remind myself of that and go about life as normal.

The weening down from the dreaded prednisone however continues. I'm now down to 17mg a day. I should be off it in 18 months at this rate. The horrible thing about weening off is that my body aches constantly and some days the pain is quite severe. I seem to live on a diet of paracetamol and Ibuprofen. Today the aches and pains are quite tolerable. I shall enjoy the normality while it lasts.

Here's something vaguely interesting.. Take a look at these images of me taken over the last five years at various stages of my treatment and recovery. I can hardly reconcile some of them as being of me, the difference in my perceived self image and reality is that great.

November 2006 feeling OK

December 2006 stem cell harvesting

December 2006 realatively well

May 2007 chemo

Sept 2007 end of chemo

December 2007 hair regrowing (again)

March 2008 prior to radiation treatment

April 2008 Ravaged by Radiation Treatment

May 2008 post radiation

July 2008 recovered from failed radiation treatment.

August 2008 about to leave for treatment in Germany

Feb 2009 just prior to stem cell transplant

July 2009 weight loss due to BOOP (un-diagnosed)

May 2010 recovering from BOOP steroid induced weight gain.

Back into life... Ooh and motorsport too :)

2010-09-30T19:26:00.003+13:00

You really don't realise how much you are affected by the stress of being told you may have only a short time to live until the person that told you that changes their mind and tells you that possibly everything is fine. It's like night and day. Every aspect of my life is changed by it. I can once again make plans and relax.

I'd even put off building the new garage to store the race car because of fears that I might not be around to have one to store. I'd carefully reduced the size of my stock orders from overseas because I didn't know if I'd be alive to sell the items if I got in too much stock. The uncertainty taints every aspect of your life.

Anyway, I have decided that I'm well and that's that. The doctor may have said things could go either way, but to me I'm in remission and those couple of nodes that he was concerned about are just odd looking nodes. End of story.

So what have I changed since the last post ? Sarah and I are off on a few days holiday, our first in a long while. We are staying at a Lodge in Taranaki that offers accommodation in private chalets situated along the shores of Lake Rotorangi. Will be ultra relaxing!

The race car is back together and just needs to be sign written to be complete.
I raced it last weekend at Shelly Bay. I'd told Sarah that I was going to ease myself back into motorsport and take it easy as I haven't raced in nearly a year.
The road was in terrible shape, the worst I've seen it in the fifteen years since I first competed there. Loose gravel on the corners was making for a very scary course and three cars were completely written off as a result. Thankfully no one was seriously hurt.

Here's video of the worst of the crashes. Victor Yuen, my co-driver from last year's Targa, spun out on the loose surface and careered off the road onto the rocks and into the sea upside down.

I took it easy for the practice and first timed runs. For the second run I used high boost and tried to come to grips with the road. Because of all the loose stones on the road a lot of people were taking a low racing line through some of the corners which resulted in the stones being swept up high onto the racing line that I would usually take. It was very scary to find myself committed at 160kph to a high racing line only to find it covered in gravel.. the resulting slides certainly made for a scary drive!

I managed to post a time that put me in front, however it was a full six seconds slower than I've done in the past. For my third run I took a passenger and that proved to be my downfall.
As I sat on the line I asked him how much he weighed, "just over 90kg" was his reply. "Hmm.. the last time I had a passenger that heavy I kept spinning out!" I told him.

The run was going well, I'd managed to find some good racing lines and grip didn't seem to be a problem. Then as I approached the Lighthouse at around 180kph I lost concentration, I braked too late and the added weight of the passenger had made slowing for the tight second gear corner all that much harder. The wheels locked, unlocked, locked again... I turned in and hoped like hell we wouldn't go off the road and into the sea. The Evo spun 90 degrees to the road and slid around the corner in a wide drift (but was really just an out-of-control screw-up) before coming to a complete stop. Luckily unscathed.

We then drove to the finish line, the run wasted. I'd blown it by over-driving the car.

The end result was that I finished in second place behind Tony Burrows who had managed to better my second run time and not make any mistakes. I'll never know what my time would have been had I not spun-out, stopped and toured to the finish, but the total elapsed time was just 4 seconds off the winning time. Still.. not bad for a very Rusty-Racer.

Next event is Port Road on Oct 24th, then it's Admiral Road Hillclimb on November 7th.

Work has been busy as usual. Lots of little jobs and a couple of big ones..

This little Alfa GTV race car has been one of the more interesting jobs. I fabricated a new exhaust system, upgraded the fuel lines and installed a hydraulic hand-brake. Ultimately the car is being prepared for Road, Race and Targa use.

..and finally no blog post would be complete without a mention of the dreaded Prednisone steroids. I'm weening off them slowly, now down to 18mg a day. Some of the side effects are diminishing, such as the back pain which is now of no real concern. ..Just another 18 months and I'll be free of the dreaded drug!! ;)

Results ...

2010-09-16T18:32:00.001+12:00

Well after a long three month wait on a knife edge the scan results are finally in.
There's been no change in the 15mm lymph node in my pelvis and some of the other smaller nodes that showed on the previous scan are no longer visible. One in particular near my heart has disappeared.

Compared to his tone of three months ago Dr D'Souza was a lot more positive, I would say cautiously optimistic. He said there's around a 50% chance that the treatment has been successful, which is a lot better than last visit when he was certain I had relapsed and that there were no longer any curative treatment options for me.

This time round there seems to be doors opening up for me in light of the fact that my lungs have improved back to normal and I'm weening off the prednisone. The fact that the 15mm node in my pelvis would have had to have grown at a time when my prednisone dose was at it's highest, but now seems to be being kept in check is another good sign that it's probably not lymphoma.

So the bottom line is it's still a bit of a lottery, but there is no conclusive evidence of relapse.
I do have a problem with a severe back pain, but that may well be muscle weakness due to the steroids and the result being that it allows an old back injury to flare up as it's not being supported by the muscles anymore. The reason for concern by me was because I have always associated my back pain with active lymphoma. I'm going to start doing exercises to strengthen them. This, if it is successful will give me both peace of mind and fix the pain.

OK.. time for a cautious celebration, Only no wine cause I'm on antibiotics for a chest infection! Bugger!

Big "Thank you" to all of you who have contacted me to wish me well. So pleased we got the result we had been hoping for.

Cheers! ...Ron

Waiting, pain, mental health, God and Guns.

2010-08-19T14:24:00.002+12:00

It's now just eight days to my next CT scan. Then a couple of weeks till I get the word on whether I've relapsed. Some days I am convinced I have, others I'm not so sure. I guess if I work on a totally logical level and remove the denial aspect, then I probably have. However it must be at a very low level because some of the little signs that point to relapse have been with me for over a year.

I think it's best to just live in ignorant bliss and get on with life. I got a big fright last week when I developed an excruciating pain in my lower back and left pelvic area after a glass of wine. A classic Lymphoma B-symptom. However I have had the back pain on and off in the past and can't 100% link it to HL and it could just as easily be steroid related as it seems to occur at a point when the steroid is at it's lowest level in my body, twelve hours after taking it.

However I've found that I am having a lot more episodes of the dreaded pulsing back pain these days. Sometimes reaching an 8 on the pain scale. So painful that you are unable to focus on anything but the pain and if it wasn't for the fact that it's a known thing.. you'd be tempted to call an ambulance. (On my pain scale 9 is akin to torture and 10 you pass out). Last Thursday night I took paracetamol, Ibuprofen and then Morphine before the pain faded over a period of three hours. I was unable to walk as each "pulse" completely removed muscle function from my legs. Not fun!

What I do now is take paracetamol as a prophylactic, in the morning and at night. If I time it right the pain never gets a chance to build and all is well. With each 1mg reduction in steroid dosage I can expect even more body aches and pain as my system goes into adrenal withdrawal.

I've finally gotten over the last of the dreaded cold that I had, it almost feels weird not to be coughing all the time. I've probably only had a couple of weeks since April last year where by I was not coughing constantly. I'm now at a point with my BOOP that I will be weening off the prednisone over the next 18 months or so. That's assuming I haven't relapsed of course.

I've had plenty of work lately, mainly suspension upgrades and wheel alignments. Today and tomorrow I've declared "Mental Health Days" and have booked no work. I'm thinking about making a low-key start on the Evo once I've posted this blog update. Maybe put some door panels on or something.. just enough to fire me up to do the bigger things later on. Perhaps once it's all back together I'll get excited about entering some events again.

Sarah and I finished work on the courtyard last weekend, it looks great! We have just a couple of metres of pathway to complete and the whole job will be done. We are so glad we broke the job down into bite sized sections. Looking at the job as a whole it was quite daunting.

Exciting things on the horizon.. Rally Wairarapa on Sept 10-12. This will be the sixth year we have "Swept" the rally and it's something we both look forward to! More so me than her she tells me. Probably because she does all the paperwork and I just drive flat out like a loony on the closed gravel roads :o) Here's a link back to my post of last year which describes what the job of the "Sweeper" is.

My brother Mark and I have gotten right into our shooting and have been buying all sorts of gizmos and addons for our rifles so we can more effectively shoot rabbits on a couple of local farms. I know not everyone likes the idea of killing small animals but they are a pest on farms and they eat almost as much grass as a sheep. We both find it a good way to get exercise and wind down.
We are having some new silencers custom made for our rifles to avoid scaring away the prey. The guy that makes them is a Reverend who is also a gun fanatic, an engineer and an amateur science nut. A strange mix of God, Guns, killing and creation.

OK.. off to see what I can get done on the race car... :o)

UPDATE: Got a lot done on the Evo in just a short time: Door trims fitted, rear bumper mounts started, engine running. Engine will need to come out for a freshen up though. Tomorrow I'll do some more now that I'm motivated.

Hmm

2010-08-10T18:03:00.004+12:00

Ever coughed so hard you broke a rib? I think I did last Saturday.
I believe I'd already cracked it the week before during a severe coughing fit and I'd been in a fair bit of discomfort since.
Saturday morning I was laying on my side when I coughed particularly hard. As I did something went "pop" in my right side and the pain was excruciating! I was unable to move from the couch all day. Any sort of movement and I was in agony.
However after only a couple of days the pain is now quite bearable and so I'm not sure I actually broke a rib.. maybe I just tore some cartilage. Would be most unusual for the pain to subside so quickly.

Last weekend my brother Mark and I went up to Waikanae to do some pest extermination for a woman who owns a farm in PekaPeka that is over-run with rabbits and Pukeko.
We obtained a permit from "Fish and Game" to shoot the Pukeko out of season as they were destroying the farmer's grain feed and causing a general nuisance. In one night they had pecked open the bags of over a thousand dollars worth of feed leaving it wet and unable to be stored.

The paddocks were over-run with the birds and I figured we would have no problem bringing the numbers down. However no matter how many shots I fired I just couldn't hit a single one.
After a couple of hours of traipsing through boggy paddocks and having frightened off all of the birds into the neighbours paddocks we gave up and went home feeling somewhat embarrassed at our poor shooting skills.

Today I set my rifle up in a jig and checked the sites over a distance of 50 meters. I fired a shot at a board that was 900mm high and 600mm wide and the bullet missed it completely! Somehow in the 12 months since I last sited in my rifle it must have been knocked out of alignment.
I tightened the scope, fired another round at the board and then adjusted the cross-hairs to align with the bullet hole. A rapid succession of shots all into the same spot confirmed that it's now correctly sited and I won't be firing two feet over their heads next time!

I went for walk to the top of the hill today. I wanted to test out my lungs now that my cough is gone.

It's a real grunt to the top but I managed to better my last time up and made it to the top gate in 33 minutes, returning in a total of 59 minutes. I'm fairly sure most people would struggle to to keep up, so I'm pretty happy about my over-all fitness considering what my body's been through in the last five years.

Oh and the view from the track is fantastic making the walk well worth the effort.

It's still another couple of weeks before my next CT scan and then two weeks after that before I find out if I have relapsed. In the meantime I live on tender-hooks.

I've still no major signs or B-symptoms. Fingers crossed the nodes have shrunk and I can start planning for the future again.

It's been a while..

2010-08-02T15:06:00.003+12:00

It's been a while since I last posted, so I thought I'd better put fingers to keyboard.
Most of my time has been spent in the workshop and around the house and section.

I've had a huge amount of work come through the workshop in the last month. Everything from a Porsche 911 Carrera (964) for a Bilstein shock absorber upgrade to a Nissan "People Mover" Van for a suspension handling package, the latter I had to spec up myself as no one listed springs or shocks for it. There's also been the usual mix of Mustangs, Camaros and Corollas for wheel Alignments and tweaks.

Around the house.. Sarah and I have almost finished the courtyard. It's been a huge job, taking up the last four weekends and we still have about two days worth of paving to complete.
The Spa pool is now in place and running. Last night after spending all day laying pavers we got into the pool and soaked away the body aches while the wind and rain pelted down outside. The covered courtyard provides complete protection from the elements. Very cool! :o)

I've done nothing on the Evo race car. I just can't seem to find the time with the current work load and jobs around the section. Having said that, I'm having a mental health day today because I over did things yesterday and am paying dearly for it. Last night I suffered a severe back-ache and today I am feeling quite "off" as well. One good thing is that the cold that I developed nearly four weeks ago seems to be waning and I'm coughing a lot less. (As is Sarah who caught it a week earlier than I did).
I've managed to re-crack the rib I injured in last year's Targa crash too... a side effect of the prednisone making my bones brittle combined with a couple of fairly decent coughs from this cold. It hurts a bit but not so much as it did last time.

I still have no idea whether I have relapsed or not. I finally got to read the report from the last CT scan and it does indeed look on paper like I have. However I'm still in better shape now than I was a year ago so it's anyone's guess. I have another CT scheduled for late this month and then two weeks after that I have the follow up with DR D'Souza to discuss the results. I live in hope that the nodes they are concerned about have either shrunk, disappeared or remained indolent.

I did have a night sweat last night, but I think that was because I took two paracetamol tablets for the back-ache. Paracetamol causes you to sweat which is how it breaks a fever if you have one.
I used to think that the pulsing lower back ache which can get up to about a "7" on the pain threshold was one of my "B' symptoms that indicated I had active Lymphoma. However I have had the pain when there was no decernable lymphoma on CT nearly a year ago. So perhaps it's not.
The mild skin itch I've also suffered from seems to come and go, so who knows.. I'll be glad to get the next CT over and done with so I will know either way.

I had a lung function test last week along with an appointment with the respiratory doctor. My lungs are now in the best shape they have been in since 2008 and that's with this darn cold which leaves me coughing and breathless. I put the improvement down to the little bit of exercise I have managed to get in. I can walk at a brisk pace to the top of the regional walking track above our land in 36 minutes. It's a steep up-hill grunt the whole way. It's amazing just how good I feel afterwards though. Exercise really does affect your whole sense of well-being.

I start weening off the prednisone next month. One milligram a month. It will take a year and a half to get back to zero and start feeling normal again, and that's assuming I haven't relapsed. It get's too scary and complicated to comprehend if I have, so I won't even go there!

Till next time.... Ron

Busy around the house..

2010-07-12T16:50:00.004+12:00

Last week I got Kurt in with his digger to remove a section of the bank at the rear of the house to make room for more parking and the planned storage garage. Sarah and I then spent most of last weekend compacting the gravel and leveling parts of the courtyard ready to start the paving around the spa pool.
Sarah shoveled and then barrowed over a tonne of gravel! How many 45 y/o women can lay claim to doing that?

The pictures below show just how much of an improvement in space we gained from just a couple of meters of soil being removed.

I've been living on a knife-edge since getting the word on my last CT scan from the Doctor.

However I don't seem to be exhibiting any major symptoms of relapse other than a mild skin itch.

All the other aches and pains I've had for over a year now and I had them at a time when I'd had several clear CT's. So I don't think they are relevant. Just wish I didn't have the odd prickly itch because then I'd be convinced that it's all a false alarm. (skin itch is a B symptom of Hodgkins Lymphoma, among other things)

I'm booked for another CT in late August, with a follow-up appointment in late September.

If the nodes in my pelvis are bigger I'm sure Dr D' Souza will be in touch. Hopefully he'll be in touch as soon as he see's the results good or bad! Would be nice to at least know where I stand.

Motorsport is pretty much on hold right now. I don't have any real desire to compete at this stage and I just don't seem to be able to find the time to work on the race-car and get it back together.

There is a hill-climb in early August that I originally thought was this July, I can't see me being at that however I will be ready for Shelly Bay on 26th September as it's one of my favorite events. Plus I'd love to lower my record winning time even further! :o) (At that point It will have been nearly a year since last driving the Evo in anger so I may be a bit rusty)

Tomorrow Sarah and I start work on laying the pavers in the courtyard.. Now that's a big job! I can feel a back ache coming on already! ;o)

Later ...Ron

The last thing I ever wanted to hear.

2010-06-28T09:37:00.004+12:00

Well I had my CT scan last week and that was followed up by an appointment with Dr D'Souza on Thursday. I knew straight away there was a problem as he entered the room looking a little grim, unlike his usual smiling self.

He asked how I was, and I replied "excellent". He seemed surprised.
Apparently the CT revealed two slightly enlarged lymph nodes in my pelvic region. Not especially large at 8mm and 10mm, but large enough for the radiologist to make contact with him directly.

I said I wasn't too concerned just yet as I have not shown any signs of relapse, and other than the constant battle with prednisone side effects, I thought I was doing pretty good. I've had a couple of lymph nodes pop up in the past and subsequently fade away. He admitted that may well be the case this time too. However he seemed more negative than I'd have expected.

He suggested that in light of the fact that the nodes were too small to biopsy, that we wait another three months and perform another CT scan then. Based on that result he will either arrange for a biopsy to analise the tissue and confirm HL, or if they are smaller or gone, then ignore it.

Then came the really bad news.. the reason for the grim face. If I have relapsed he has absolutely no idea what he can do to treat me. Apparently because I'm on steroids long term and can only be weaned off over a reasonably long period of time, we can't use chemotherapy as my weakened immune system would mean I'd probably not survive any infection.

I can't be given an allogeneic stem cell transplant for the same reason and also the damaged area of my lungs would most likely be a site of disease re-activation in the future. Also if I developed BOOP/COP again we would not be able to treat it with steroids because that would switch off the lymphoma fighting aspect of a transplant (called graft vs lymphoma effect) where by the new immune system attacks the cancer. The result would also be fatal.

So here I am sitting in this small room, feeling great and he's telling me that the worlds about to end.
Oh.. but I might be OK.. just sit around stressing for the next three months, or until you feel really unwell and we shall take another look.

Needless to say my frame of mind has changed somewhat in the last few days. I'm unable to focus on much and all our plans for the future are in doubt, so it's hard to get excited about much.

What does make things even more stressful is that I have a very slight skin itch. It's nothing like the insane itch I get when my Hodgkins has definitely been active, so it may just be caused by the steroids or a high glucose level as a result of long term steroid use causing diabetes. It could also be the Hodgkins itch being suppressed by the prednisone too! So although I feel good, every now and then I get a little pin-prick tickle that reminds me that I may not be.

Ever the optimist, I'm sure I'll get through all this again like I have in the past. Heck I'm still here five years after first getting the bad news. Though I must say that I'm playing with a much smaller pack of cards than ever before. It'll be a challenge!

...Ron

Just a quickie

2010-06-22T09:33:00.000+12:00

It's been a hectic couple of weeks in my world.. well it seems that way. In reality it probably wasn't.
I've been weening myself down on the prednisone (yes.. my world does revolve around that drug!)
and I seem to fret about stuff that ultimately probably isn't even an issue.

However, I have been busy both with work and stuff around the house.
One area of concern has been security following the two thefts. I've installed an alarm system, upgraded the security camera system and am now working on the idea of an automatic gate that I shall connect to the the other two systems via a module that can text me whenever anything happens around the house. It's an idea I've come up with based on a unit Id seen that was designed to control dairy farm gates via mobile phone. It's amazing what you can come with at 2am on a sleepless night. One good side effect of the steroids I guess!

The Evo is now back home and looking good. I have to set about designing a quick-release type frame for the front bumper. The factory frame is bent beyond repair after the Targa crash and I've always had trouble getting the car on and off trailers with the front lip catching on the ground. The way around it will be to make a frame that attaches to the bumper skin and that can be removed by releasing just a couple of T-bolts.

Speaking of race cars.. It's become apparent that there's just not enough room in the workshop to store two race cars and have enough space to work on other projects. After consulting with Sarah (The accountant) she agreed that we really needed to build a separate storage garage for the two toys.
So starting next week I'll have Kurt, my former employee/mechanic turned earth-moving contractor, "fine tuning" an area of land at the rear of the house so a double garage can be constructed. That's going to keep me busy for a month or two for sure!

Yesterday I had a CT scan. I'd forgotten how much I have come to hate hospitals. There seems to be a limit as to how many medical procedures a person can have before they start to become abhorrent. I think I passed that point some time back. My veins are so damaged by chemo that the simple task of inserting a line is now a real mission. What was once just a case of choosing one of the veins on my arms that stood out like the lines on a road map, followed by quick sharp pin-prick. Is now 30 minutes of heat bags, tourniquets, searching and sometimes failures.

Yesterday I showed the nurse the most likely spot for success, she ignored my advice, failed on her choice and then succeeded with mine. Not surprisingly I have grown to hate needles. Today I have a blood test in preparation for tomorrows meeting with Dr D'Souza my haematologist. I doubt he will have had enough time to review yesterday's CT scan. So I'm not expecting to come away from the appointment with any news. However the scan is just to confirm continued remission, not because we suspect relapse.

Today is one of the first clear sunny winter days we have had in a long while. I think I should get out there and enjoy it while I go about the day's tasks..

Till next time ..Ron

2010-06-09T14:11:00.005+12:00

This weather has been crazy! Nearly a month of rain so far with just a couple of days of sunshine.

Yesterday we had our first really cold day in the new house. The sleet built up around the windows giving that traditional frosted Christmas window look.

My health has been a bit weird lately. I increased my steroid dose just in case the chest infection/ asthma I had been suffering was a relapse of the COP (Cryptogenic Organising Pneumonia) and that made me feel really good. However I've been afflicted by a viral infection in my left arm.

I'd mentioned in a previous post that the haematology doctor wanted me to take an anti-viral drug daily on a permanent basis. I declined. He told me to be on the watch for the first sign of Shingles. A tingling of the skin in a band around my chest. If this happened I needed to go on the antiviral immediately.

A few weeks back I had a burning sensation in my left wrist, much like a chemical burn would feel. I figured I'd got petrol on my skin. Last week I started to experience numbness in the fingers of my left hand and just assumed it was a pinched nerve, something I've had on and off for years.

Then last weekend I developed pain in my left armpit and shooting pains in my fingers. Last night I took a look at my armpit and found it had a series of small red blisters. I also have a few welts on the palm of my left hand.

I know enough to realise that it can only be a viral infection, and that it's following the nerve endings down my arm. I see my GP tomorrow, but I know he's not going to be able to do anything as we missed the 72 hour window for the antiviral drugs to be of any use. It should clear up in 3-5 weeks all by itself.

There is a risk that it can spread to the lungs in someone with a compromised immune system such as myself, however I think this would have happened by now if it were going to. At least I'll know the symptoms for next time.

Who would have thought it would have appeared in just one arm?? At least it wasn't on my face, which is fairly common.

The EVO race car is once more a thing of beauty thanks to the team at D.E McMillan panel. They tell me that there is a slight difference in the colour of the doors to the body work as they were painted at different times. I couldn't see it myself, but they tell me they are going to remedy it before I pick the car up early next week.

From there I have to put all the interior back together along with quite a number of mechanical repairs.

I have a hillclimb event in early July that I'd like to enter, however the engine is supposed to be stripped and rebuilt as part of it's Post Targa service. I may put that off till after the event.

The car looks so good that I may be too scared to drive it hard just in case I scratch it again! .. I wouldn't want to break the hearts of the team of panel-beaters that fixed it! ;o)

I've finished the storage room under the house and made myself a lot more space in the workshop. However with the Evo returning home that will leave me very little room, so Sarah and I are looking at building another garage to store the two race cars. I'm not sure who's the most spoilt.. me or the cars! ;o) We never really expected that I'd be putting so many customers cars through the workshop and it's just not really a good idea to be driving the Evo in and out everyday as I put cars on and off the hoist. The short running will destroy the engine and the race clutch in no time and they cost more than a garage to build.

The insurance company has paid out on both the stolen mountain bike and the race wheels. In fact they wanted to pay me too much for the race wheels and I had to decline their cheque. They somehow thought that $1500 was a fair price for the wheels. I pointed out that I could buy another set for half that. I don't think I should be making a profit from the theft, so have asked them to reduce the figure.

Having said that I've now spent quite a bit of it on a new security system. Monitored alarm and cameras. There should be enough left over to buy a new bike too. So maybe there is a silver lining to it all.

..Ron

I guess I'd better write something.. It's been a while.

2010-05-31T16:18:00.001+12:00

I've been suffering a bit of a chesty cough for the last few weeks, so I've increased my daily prednisone dose up to 27.5 from 21 just in case it was the COP returning. I must say I do feel a lot better for it. No nightly back aches and pains. However that will probably change once my body gets used to the higher dose and starts complaining again. I threw in some antibiotics too and things seem to be improving.
The change from hot to cold as I move around the house and workshop can bring on a bit of a cough too but that's not entirely exclusive to me, I think most asthmatics would get that at this time of year.

My brother Mark and I have spent the last two Saturdays building a secure storage area under the house to keep all my long term car parts and spares stored away. It's all finished now, I just have to lug all my wheels and heavy boxes of car parts down under the house. Not a small job! However this will be great as it will open up a lot more space in the workshop.

What's more.. It will also allow me to lock stuff away securely as we have been the subject of two thefts in the last month or so. First time was set of spare wheels for the Evo from under the house and the second was my mountain bike from the covered courtyard. I'd originally written the wheels off and wasn't going to claim insurance on them. However once the bike was stolen and I priced replacing everything the bill was over $3500. So well worth claiming on. Sadly I need to spend a lot of that on a better security system.

The really annoying thing is I'm 99% sure I know who took the items, but without firm proof it's a waste of time pointing the finger. I just wish my security camera had been working on the day... that's the first thing I will be upgrading!!

...Ron

Time to get motivated.

2010-05-19T14:43:00.000+12:00

I spent most of today at the hospital. Don't panic.. it was just my regular check-ups. An X-Ray and Lung Function tests.

The results are a little concerning but ultimately I shouldn't be surprised as it's something I've suspected all along anyway.
There is an area of fibrosis on my right lung. That's permanent scarring that will never recover. So it's effectively an area that's non functioning. Gone forever.
My overall lung function is no worse than my two previous measurements, which is good. In fact there has been a slight improvement. So at least I'm not getting any worse.

Bad news is that we really need to tread carefully to make sure we stamp out the COP and prevent any recurrence in the meantime. So with that in mind Darren has recommended that I stay on prednisone for a lot longer. Possibly up to two years!

Considering I've put on 15Kg's in the last six months, I really need to modify both my diet and my exercise requirements. I've been a bit lazy about it all. I've assumed that this would be all over within the next couple of months so really haven't bothered too much with restricting my diet. Now is the time to start or risk the secondary health issues that come with long term prednisone use. (Weight gain, diabetes, bone density loss..)

I plan to cut sugar from my diet, drink more water and work on getting my lung capacity better through regular exercise. Heck if people can run a marathon on one lung, I should be able to get through this on one and three quarters.
I refuse to have my life quality reduced by it all. Ironically it stems back to that first dose of chemo. The one that I believe contained an over-dose of the lung damaging drug Bleomycin. Add to that the mantle field radiation treatment I never wanted, that was a total waste of time and massively damaging to my body and it's no surprise my lungs are in the state they are in. But hey! I'm alive to complain about it! :)

I've started keeping an XL spread-sheet so I can hopefully work out a pattern and see why on some days I am particularly ill and on others I'm fine. This Monday I had a repeat of the aches and pains that I suffered last week (see previous post) and yet I can't see an obvious cause, both occurred on a Monday.

The house had it's final inspection this week and passed on all items except for the water cylinder that required strapping down. The annoying thing was that I had the strapping kit just sitting there ready to put on but had never got around to installing it. I didn't realise it was part of the compliance inspection so had left it. (You'd think the plumber would have installed one when he fitted the cylinder since it was a legal requirement!). Anyway it's all fitted now... did it last night. So we should be all signed off in the next week or so. Apparently one of our neighbours has not had his house signed off yet and he built it eight years ago. Wonder what he's failed on..

OK time to put on my overalls and do some real work. Gotta fit a steering linkage to that Mustang and solder some wires in the boot. Tomorrow is a huge day.. that will teach me to do bugger all for the first half of the week! I have this habit of bulldozing my work towards the end of the week and then I wonder why I get so busy on Thursdays and Fridays. Must stop doing that! :)

Cheers! ..Ron

A little bit of pain never hurt anyone..

2010-05-10T11:14:00.011+12:00

As I sit here typing, I'm in a lot of pain. It's almost certainly a result of my slow weening from prednisone. I've been dropping the dose for the last month by 1.25mg a week. A tiny amount, but it would seem that my body is so used to the higher dose of cortisol that it's kicking up a hell of a fuss.

My lower back is pulsing and twingeing away like crazy, I have pain in my hips, groin and between my shoulder blades. I feel like my spine is made out of a collection of loosely assembled bolts and each one is out of place. I've taken a couple of paracetamol. Hopefully I will gain some relief soon.

Checks temperature... 37.5C Hmm would like it to be a little lower.. won't worry about that unless it becomes a daily thing, or my cough returns. It really is a delicate balancing act. If I get it wrong and the COP/BOOP returns like it did in Feb, I'll be back to square one. Six months wasted treatment.

I haven't done a lot around the house in the past couple of weeks. There's plenty to do, but no motivation to do it. We are waiting for Code of Compliance to be completed by the council before we plan any more work such as the driveway resealing etc.

Workwise I've got some interesting jobs booked for this week. A 70's Buick in to have the suspension leveled as it sits a little crooked. Then on Wednesday a beautiful Mach1 Mustang, powered by a 390 cubic inch big block engine. That's in for steering repairs and wiring faults.

I've also been asked to do a long term project in a few months time.. a Chevy Blazer that needs to be put back together after ten years in pieces. Could be a big job!!

I have to wonder though, where all this Muscle car work is coming from? Maybe I've earned myself yet another reputation.. old guy.. old cars ;)

The Evo is now back on it's wheels. I spent an afternoon at the panel-beaters reassembling the rear suspension last week. It's now awaiting final panel finishing and undercoating before it's painted.

I'd like to have it back together in time to compete in the next round of the Duncan McKenzie series in late July. Last years poor points tally meant that last week's annual prize giving was the first time I hadn't won the series in four years. A combination of ill health and Targa meant I was not able to compete in several rounds, missing out on the necessary points. However I did come third, so not all bad.

Oddly enough I have the trophy here in my office waiting to present it to Tim Sillay who shares the trophy this year with Webster Gough. It's great to see it go to them both as they really worked hard towards winning the series. Some spectacular drives from both of them by all accounts.

Oh good... the pain is starting to ease :) Just shows you how slow I type!

Last week I received an email from a Dentist in the UK who had been trying to locate a long lost friend of his. He had typed his friend's name into Google and my blog came up with the name of my respiratory doctor.

After a few emails were sent back and forth, he ascertained that this was indeed his friend from fifteen years ago and they have now reacquainted themselves.. I shall have to be careful in future not to post any scathing comments about the NZ health system.. you never know who is going to be reading them! ;)

Oh! just got an email from my haematologist! Reads...

Blood counts are still low, platelets 38, been that way for months.. No need for concern.. CD4 counts are now 360 up from the scary AIDS-like figure of 200. I can now stop the weekly antibiotics as opportunist infections are now unlikely! YAY!!

My T and B lymphocytes are still low but there's just no info out there as to what that means.

"Stay on anti-fungals until steroids have finished"...

Well no bad news there, so that's good.I next see the doctors in a couple of weeks.

OK, pain is almost at a level that I can move around.. so shall go and complete my stock-take of Silicone Hose. Fun, Fun! :(

Cheers! ...Ron

It's May already!

2010-05-01T15:09:00.006+12:00

We have been in the new house for over two and a half months now and there's still heaps to do.
There's been no progress on the courtyard. Like the kids from the Mitre Ten advert... To be honest it's a pretty big job. Might have to get a bloke in to do it. (Mitre Ten advert)

Back when the building platform was being cleared, the digger operator decided we needed a back lawn and piled up all the top soil to form a nice flat area where there was once just a steep slope. Sarah planted some native grasses and flaxs around the edge a few months back and they have taken well. We kind of missed the best time to have sewn it in lawn, which would have been back in September last year. Had we done it then when it was wet for weeks on end, we would have a great lawn by now. But now it's kind of taken off by itself anyway.. half weed and half grass.

We have sewn two huge bags of expensive lawn seed onto it in the last month but the birds keep eating it.
It's hard to get angry at them, as it's kinda nice to have so many birds in your garden. Chasing them away is a waste of time as the cheeky devils sneak back the moment your back is turned. I'm sure by the end of winter we will have something to show for it all.

I've been flat out with work, (eight wheel alignments last week alone) which is great if you want to save up enough money to upgrade your driveway, but not good if you want to get stuff done around the house. It's all a balancing act and I always have the option of saying "no" or booking weeks down the track.
I've been consolidating all my tools, filling in the gaps where some have been lost or broken. I purchased a new roll-cabinet tool box and chest, something I've always wanted. It's amazing how when you collect thirty years worth of accumulated tools into one place how you find you have four or five of some things because you think you've lost them and buy more!

The Evo race car is coming along nicely since being cut in two and rejoined. I was originally a bit upset at the thought that my "mint" original car was having another car's rear end attached to it. But it was discovered by the panel-beaters that the rear had already had massive repairs done to it in an earlier life and that with fitting the complete replacement rear section the car would be better for it.
PPG paints have kindly offered to supply the paint free of charge which is amazing considering I hadn't even asked for sponsorship. A big Thank you to Greg Buckland and the team at PPG for their generosity!

On the health front I'm pretty much stable. I have the odd "off day" from the steroids but nothing too bad.
My weight is now 79kg. A full 14kg's up on my lowest figure from last year. I've bumped into more than a few people of late who have jokingly called me a fat bugger! (at least I think they were joking) so I must be looking a lot better. Sarah seems to think so. She said she doesn't feel scared now that the weight is back on me. I imagine it would have been hard to watch someone you love fading away and not knowing when or if it will stop.

Till next time... Ron

When people drop in..

2010-04-16T15:59:00.003+12:00

Last Saturday we had the strangest thing happen at our property...

Some guy tried to turn around at the top of our driveway, he left the car in reverse thinking it was in "drive". The car shot down our step drive and he panicked leaving his foot hard on the gas pedal thinking that he was on the brake, he then bounced off the inside bank, then over a steep drop, bulldozed his way through the bush and then rolled it into a ravine.!!
The car finally stopping on it's side against a tree some thirty metres from the road and completely secluded deep under the canopy of trees.

He remained trapped in the over-turned car, unable to open the door due to it's weight, for over an hour. At no point did he think to sound his horn and let someone know of his predicament.
My brother and I were working outside all day and we heard nothing. Eventually the driver found his cellphone and called his wife who rescued him.

The first thing we knew of the crash was when she knocked on our door to say if we saw a car down the bank (on our land) not to worry because they had called a tow-truck!.
Apparently the driver swears the accelerator stuck.. yeah right! no skids marks and wheel spin marks right down the drive and over a bank.

Three tow trucks turned up that night to extract it, along with a team of operators. It did provide a ton of entertainment for my guests who had arrived for a BBQ dinner, most of whom had driven straight past the crash site in the drive and not realised someone was trapped in a car below the road.

Had the guy been more seriously injured and not found his phone (or his horn) he could have been there for at least another 24 hours before I would have seen the damage to the surrounding trees and driveway and investigated.

The car is a total write-off. On the plus side, the driver and his wife stopped by the next day to apologise and give us a two native trees to replace the ones that were up-rooted by his out of control excursion.

All is well

2010-04-09T17:26:00.014+12:00

It's been a really good couple of weeks on all fronts in the period since I last posted.
I got over the cold/chest infection I had and the increase in my steroid dose soon fixed the cough and fatigue that had returned.

I can honestly say that I'm feeling the best I have since starting treatment nearly five years ago. I can work around the house and section without any undue fatigue, and other than a few aches and pains that come with the steroids, I feel great!

Over Easter Sarah and I ventured up to Napier for a friends wedding and I indulged in a small quantity of wine for the first time since 2006. I used to really enjoy a good glass or three of wine, usually a Riesling or a Gewurztraminer, and my dwindling wine collection which is now down to around just twenty bottles has remained untouched by myself since that time.

Every time I'd try a wine it would taste bland and un-enjoyable. Suddenly I can taste complex flavours again and if I take a few painkillers before hand, I don't get the associated back pains. :) It's great that once again the little things in life, like good food and wine are able to be enjoyed. I really did think that after nearly two years since I had radiation treatment that the damage to my sense of taste was going to be permanent.

I've almost finished setting up the workshop. I've still yet to find a home for all my stuff and get all the tools and equipment in their final resting places, however I've so far had five cars on the hoist for various work from exhaust systems to suspension repairs.

Would you believe we have been in the new house for nearly two months! There's still heaps to do. Mostly landscaping stuff and laying the courtyard pavers etc. I've just been down in the bush cutting down dead trees with my new chain saw.. fun, fun ;)

The Evo race car has been completely disassembled and the rear end cut off at the windscreen so that new rear bodywork and chassis rails can be fitted. I cannot thank Deane McMillan of D.E McMillan Ltd enough for kindly offering to rebuild the car following it's crash over a bank during the Dunlop Targa 2009. It's a huge job to undertake as a sponsor and I'm very grateful. Please support Deane's business if you require any paint and panel work. They do a fantastic job!

OK.. shall run away again.. It's so good to be back to (semi) normal health again!!!!!

..Ron

Chats with the Doctors

2010-03-17T10:02:00.007+13:00

Last week I had a couple of appointments at Wgtn hospital, a Chest Xray, lung function test and then a meeting with Darren Bowles the registrar who has been treating me for COP.
Both Sarah and I developed a cold/chest infection about four weeks ago and this has set back my recovery and length of treatment by a couple of months.

I'd been reducing the steroid dose by a 5mg a month and was on 20mg a day when I developed the cold and it's associated cough. The resulting lung inflammation was unable to be controlled by the lowered dose of steroid and so both Darren and I agreed that we should go back up to 25mg for the next two months and then start reducing again after that. I may need to go even higher if I show any signs of worsening. Doubling the dose is the first line of attack if I relapse severely.
Then it would be several more months before the dose was back to 20mg again.

It's a little annoying as I really don't want to be on prednisone any longer than I have to.
Some days the side effects are really bad, others they are no problem at all. Monday night for instance I was in intense pain in my lower back and hips for four hours and nothing I took or did would reduce it. I've had no pain since.

Yesterday I had my three month follow-up with Dr D'Souza my haematologist. It's now been over a year since my bone marrow transplant (stem cell transplant) and we covered a lot of stuff.
It's a bit like attending a medical lecture, the amount of information he pours out is incredible and I'm not sure if it's because he knows I like to hear all details or what, but I'm sure it would be lost on most patients .

I asked him if he had any ideas on the possible cause of my muscle cramps and we went through a few possible causes. There is a treatment, quinine, but it can cause a drop in platelet numbers and I have a low enough platelet count as it is (compounded by the steroids as well) so we excluded that as treatment and I've decided to put up with the cramps. I was pleased though that I knew quinine was not an option as I'd read about it's side effects when researching my thrombocytopenia a few years back.

I've been trying to reduce my dependence on Fluconazole, an anti-fungal drug I have been taking daily for over a year now. My severely compromised immune system leaves me open to fungal infections as well as virus's and bacteria. My T cell and CD34 counts are pretty much the same as a person suffering from AIDS, however there is very little research done in this area and the doctor said that although I have a CD34 count of just 200 there is no definitive comparison between that of a post autologous STC patient and that of someone with HIV with the same counts so we really don't know what to expect with regards to infection etc.

Hence he wants me to continue with the anti-fungal, start on a weekly antibiotic and strongly suggested I be taking a daily anti-viral as well. I really don't want to be taking fists full of drugs for the rest of my life and I voiced that concern with him. We agreed to take a wait and see approach to the anti-viral and I'll take the weekly anti-biotic as it will help guard against a repeat of the pneumonia I suffered last November.

Dr D'Souza said that some of the top overseas lymphoma specialists are now moving away from regular CT scanning post treatment and are now using it only to confirm involvement rather than look for it. He asked what I thought about not having regular scans and I said I'd like to have one mid year just to see what does or hopefully doesn't show up. The steroids shrink any activity in the lymph nodes, so even then it could well be a waste of time. Doesn't hurt to look I guess.

We are still settling into the new house. I've yet to complete the painting of the workshop, but hope to have it all done in the next couple of days. Then the hoist can be installed and hopefully I can start on the back-log of jobs I have booked from various customers who have patiently waited for me to get set up again.

...Ron

So much to do...

2010-03-05T17:23:00.003+13:00

I've been flat out since moving into our new house. I've been learning new skills almost every day. I've learnt how to prepare and varnish timber, how to paint, how to install wiring into walls, how to make a wooden letter box, how to repair an electric domestic water pump. The list is endless.

I've installed heated towel rails, mounted a Big screen TV on a wall and connected it to my home network, I've set up a home theatre system, installed a water purification system and tweaked the water supply system for better pressure. I've carted gravel from one end of the property to the other, assembled shelving units, painted floors and hung shower curtain rails to name but a few. Every day there is something new.

The water pump for the domestic supply and sprinkler system stopped working three days ago. It's a brand new pump and the biggest and most expensive in it's range due to having to run the sprinklers at full flow in the event of a fire.
A bit of research showed that the pump was not getting enough power and the voltage drop on start-up was causing it to not run. The addition of an extra large starting capacitor did the trick. (something else I've learnt).

I thought I heard a slight tinkling noise from the pump when it was restarted so I spent an hour today removing the pipework from the front of it and letting the system back-flow. The theory was that if there was anything loose in the pump it would be flushed out and I would see what it was. I didn't detect anything coming out with the torrent of water that poured from the open pipe, so I put the pipework back on, not an easy task as it's of a very large size.

I had just finished getting it all back together when I noticed a stainless steel nut sitting beside the pump housing. It didn't belong to anything I'd been working on but it did look exactly like the sort of nut that belonged on the end of an impeller shaft! Bugger.
I phoned the agents for the pump and asked the service manager whether there were any 10mm stainless locking nuts inside the pump. He said there was and it was probably the lock nut for the impeller. Tomorrow I'll strip the pump and refit it. :(

I've still yet to paint my workshop, something I urgently need to get done so I can get my hoist installed. In the meantime I have yet to find a home for all the "stuff" laying around in boxes.

Sarah and I splashed out and bought a new TV and home theatre system last week. It was part of the original plan to have the TV on a big canter-levered arm that allowed us to view the TV from either the lounge or our bedroom at night. It took me over twelve hours to set everything up but it works like a charm. The electrician had put just one TV outlet socket on the wall behind the screen. I installed another seven cables into the wall in order to get everything working.

The technology of these new systems is amazing. If I insert a DVD or Blue-Ray movie into the home theater system the TV sees what I've done and automatically changes channels and plays the movie. The TV also "talks" to my home computer network and can play any movies I have on the computers in my office, along with viewing pictures and playing music files, which it then sends back to the home theatre system. It sounds complicated to use but most of the functions are intelligent and happen automatically. Such as plugging a USB stick into the TV and it again changes to that channel (the USB input) and loads and plays the files. Fun fun!!

Both Sarah and I have been suffering from colds for the last few weeks and I must say it's knocked my health around a fair bit. I've lost a lot of my energy and some days I feel like I've been hit by a train. It can take until midday before I feel well enough to function properly.
I hope it doesn't last. I think the steroids have a big part to play in it all. I dropped the dose from 25mg to 20mg about ten days ago and I've not had a good day since in contrast to how great I was feeling a few weeks back.

I attended the Hutt Valley Motorsport club's annual prize giving last night. (I was told I should attend) I took away five trophies, all for Hillclimb and sealed sprint events. Not a bad effort considering my state of health during the 2009 year!. One person commented that had there been a trophy for racing hospital beds I would probably have won that too!

Well that's enough of a ramble for today, I have a stock take to do this weekend and a garage to organise. Wish me luck!

..Ron

A really quick post :)

2010-02-18T18:26:00.006+13:00

The big move to the new house went really well. A huge thanks to the McCalls, Anthony Futter and Tim Sutherland for there invaluable help.

We absolutely love the house, it's location and the new life style. To stand out on the deck on a still clear Saturday night and take in the peacefulness, the serenity was truly awesome.
A huge thanks to Rob, Marty and Keiran for a great job on building our perfect home.

I'm working 12+ hours a day getting things sorted, painting and doing a thousand other little and not-so-little jobs. Sarah is much the same, spending her evenings getting the place into some sort of organised state. Personally I think it will take several months before things are fully sorted but that would include the landscaping etc too. We are only a week or two from having the place fully painted and looking complete inside.

Healthwise this is the best I've been in over four years. My energy levels are fantastic. The three days of lifting heavy boxes, fridges, stoves and furniture had no physical effect on me at all. However on Monday I had a series of 'turns'. Probably thirty in total. I'd suddenly be overwhelmed by a strong feeling of deja-vue. Like I'd just landed back into a dream from the night before. I'd feel faint and nauseous for about thirty seconds and then be fine again. I have no explanation for it other than maybe I missed my steroids that morning. Although I'd swear I'd taken them.

I've been fine ever since..

View the latest pics of the house here ...House pics.

Later...Ron

Moving House..

2010-02-09T19:29:00.005+13:00

The new house is almost finished and Sarah and I move in this weekend 14th Feb.

Last Fridays sausage sizzle and drinks went very well with a few surprise visitors, some I hadn't seen in years! We are planning to have a big house warming party once we are settled in. I'll post the details here once we set a date.

My energy levels are really good now and I'm using my regained strength to do as much work around the property as possible. Today I was securing 'Novadrain' pipework to waratah stakes down into the bush and into a small stream. Much swinging of a sledge hammer and climbing near vertical bush covered slopes left me puffing and sweating but it felt good to be doing such energetic work again. Last weekend I painted the workshop floor and tonight Sarah and I laid carpet in my "man cave" / Office.

You might remember a couple of weeks back I posted that I had a heavy fall in the driveway, a "Face-Plant" that left me with a grazed face and a badly bruised chest. Last week I was talking to the builders about how the steroids can cause sudden muscle weakness and spasms causing me to trip.
We were loading a trailer with rubbish from the building site. Suddenly my legs gave way and I tripped falling heavily against a metal tie-down peg that was protruding from the trailer, almost impaling myself. I say "almost" because to look at the black bruised and grazed circle on my back, it looks like I was shot with a rubber bullet. I think had the peg been a little sharper I would have been in more serious trouble!

I can see that I am going to have to be ultra careful over the next year while on medication :)

My daughter Ashleigh and her boyfriend Gary have been staying with Sarah and I for the last four weeks. They returned to Brisbane yesterday. Was so good to catch up with her, it had been two years since she last visited and so much has happened to me in that time, it's good to have had this measure of health so that we could get out and do a few things. Not as much as I would have liked though as the new house soaked up a huge amount of my time.

...Ron

Life's Good!

2010-02-01T15:45:00.008+13:00

Other than a few muscle cramps at night I seem to be completely well.

It's actually kinda strange to not be sick. It all seems normal and at the same time unusual.
An almost deja-Vue feeling. You get so used to not being able to do things, that when you can it's a novelty even when it might be something that's so familiar. For instance.. Who would have thought that being fit enough to spend a whole day painting and sanding would be cause for celebration when in reality I hate decorating!

I've been very precise with my steroid dosage and timing and it seems to make a big difference.
Previously I'd have them at various times of the morning and play with the dosage if I thought it would help my aches and pains... turns out it was the "playing" with the dosage that caused the problems!.

My weight is still climbing but not as quickly as over Christmas. I'm now about 77kg which I'm happy with. However I just need to make it spread out a bit more, as it all seems to want to sit on my stomach :(

I entered in the Port Road sealed sprint the weekend before last. Murray let me use his Rally-Rides car (a very tired Evo Lancer). It had to be one of the worst cars I've ever raced in! I complained bitterly to Muz after my first run and he thought I was joking... (he hadn't driven it on Tarmac) That was until he took it out for a drive!
He returned to the pits after his run, slammed the door, said "good luck buddy" and went back to driving his yellow beast, to ultimately take out second place.

I took my daughter Ashleigh out for most of my timed runs and we drove the wheels off the car trying to post a half decent time. It had a slipping clutch, terrible handling, poor brakes and absolutely no power! In desperation I looked under the bonnet for something to "tweak".
A bit more boost and a tad more ignition timing was all I could do.

I went out for my second timed run without a passenger, hoping that the small weight saving might help. It didn't.. but I thrashed the car within an inch of it's life and managed to post a time good enough to take out 3rd place over-all. This was very much a surprise as there were nearly sixty cars entered and good deal of them were of a much higher spec than the bucket of bolts I'd been sent out in.

The house is really rocketing along now. There's just 14 days before we move in!
This Friday (5th Feb) we are having a few drinks up at the house to celebrate it being closed in and almost habitable. Feel free to drop in after work if you are so inclined! (83 Kaitangata Crescent, Kelson. Turn left at the 'regional park' car-park and then it's the first driveway on the right)

It's been three months since Targa, and Victor and I are in the process of preparing "Thank you" gifts for our main sponsors. Loosing two months to ill health put a huge hole in our schedule.
My apologies to those that have sponsored us and feel we have just disappeared off the face of the earth. Nothing could be further from the truth.

However I really do need to sit down at some point and detail all we learnt and what we did and didn't do right. It seems so long ago, and all a bit of a haze with me being so sick at the time with both pneumonia and pneumonitis. I'm sure if I get the team together and review our videos and pics we should be able to peace together the whole story.

..Ron

Ouch!!

2010-01-21T21:39:00.006+13:00

Tuesday afternoon saw me successfully attempt my first "Face Plant" manoeuvre, complete with much pain and blood, and in the following days a bruised and battered body.
While walking down the gravel driveway at the new house I had stumbled slightly on the loose stones and rather than just fall over like most people would have, I decided to run forwards and let my legs catch up to my falling body.

Unfortunately my legs didn't move quick enough and all I succeeded in doing was hitting the ground face first at running speed. I failed to get my hands out in time, they somehow ended up being ground into the gravel while pinned to my chest. The impact was huge, it felt like I'd been hit in the face with a length of timber. I picked my self up, and dusted myself down. Blood pouring from my face, I was convinced I'd done some serious damage.

Luckily I just suffered a couple of shallow grazes to my face and some sort of bruised muscle in my chest. I thought I must be getting old! I've never had a fall like that before. I mentioned it to the doctor today during my monthly hospital visit and he said it would have been caused by the steroids weakening my muscles. I'll go with that explanation ;)

The appointment with the doctor went well, I had a chest X-ray beforehand and he was pleased with the result. My lungs now look completely normal. I'd figured as much as I haven't coughed in over a month now and I haven't had asthma in weeks.

I told him that I'd been playing around with my prednisone, splitting the daily dose in two. Taking 20mg in the morning and 10mg after dinner. This seems to help with the back pain I sometimes get in the early hours of the morning as their effect wears off. He said that he had no problem with me doing this, even though strictly speaking, steroids should be taken in the morning. Dosage drops from 30mg a day to 25mg as from tomorrow and then next month it will be 20mg. Tapering off over the next 12 months.

My weight is now up to 76kg but it seems to be all sitting on my stomach. 76kg is still light so I need to build some more muscle. I'm glad it's up 7kg on where I was early December, but it's still a gain of 1kg a week and it needs to be reined in or I will be 130kg by year end!

The house is rocketing along now. Sarah has been working on the decorating side of things. I've been working on the water etc, the tank was filled tonight thanks to Jeff Ward and his firetruck.

Over the next week we will have the storm water completed and the waste water system connected ready for the house to have it's showers and toilets connected after the paintings all done.
The deck should be underway next week too. We move in on Feb14th ready or not!

This weekend See's me competing at the Port Road sprint at a totally social level in cars borrowed from Murray O'Neil. I'll share a drive in his "rally-rides" car with Piran Pigneguy and then maybe later go and have a play in the yellow beast that Murray will be competing in.

My car is still gathering dust at the panel-beaters due to my commitments work-wise and up at the new house. There's no way it will be ready for the Mount Vic Hillclimb in March, my favorite event of the year. But I'm not too worried. This year is all about change, our new house to enjoy. The new workshop to play and work in. My new found health to embrace... the motorsport can take a back seat to that any day.

..Ron

Lots happening..

2010-01-11T17:56:00.012+13:00

I've been flat out lately catching up on the time lost from being sick. I figure I've lost about two months out of my life!

I have yet to find the time to finalise things from the Targa Life Challenge campaign. There's still photo's to organise and sponsors to personally thank. The final total raised for the Cancer Society is yet to be finalised but it appears to be around $5000.

The dented and bruised Evo race car finally made it to D.E McMillan panel for it's repairs on Christmas Eve. Over seven weeks after Targa. Better late than never. The poor car spent that entire time parked outside, and mostly in the rain. It had a pampered life before that ;) Now dented and looking rather second hand, I no longer treat it like a precious possession.

(Now it's just a car, out of sight out of mind)

The new house and workshop is progressing well. I've spent several days there now working on the water system. I've turned my hand to a bit of rough carpentry, some plumbing and a bit of electrical work. I've been making a base for the housing that protects the water pump from the elements, and putting together the components of the U/V water treatment plant.

In the photo you can see the large blue filters and the stainless steel, ultra violet light , water treatment plant that will give us water qulaity close to, if not the same as that of bottled water. Next to that is the large "accumulator" that stores 100liters of water under pressure. This allows less frequent cycling of the electric water pump.

The garage door was fitted last week but when we opened it for the first time we found that it had been damaged in transit, the installer tried painting the damaged areas but it just highlighted the problem, so it's up for replacement next week. All the other doors and windows have now been fitted and it's just a matter of a week or so before we can start decorating the main living area. Water and waste water system should be all go in about two weeks too.

Today was the first real day of hands-on work on cars that I have done in many months. Four wheel alignments in a row. All the customers had been waiting for me to return to work. Two of them had gone elsewhere and had huge problems. A 1955 Ford Thunderbird had spent a week at one workshop trying to sort the steering out and no one had noticed that a lower suspension joint was loose and about to fall out, or that the steering arm on one side was badly bent through an accident sometime in the last half century!

The next job was a Ford Mustang Muscle car that had been converted to rack & pinion steering using a kit imported from the States. The kit was a shambles, with no regard for correct geometry of the steering and linkages. The result is that the car will always have major steering problems unless it is replaced. The car had been on three alignment machines and not one of the operators understood the problem.!

Tonight my daughter Ashleigh (17 years old) and her boyfriend Gary arrive for a 4 week stay. I'm looking forward to seeing her as it's been two years since her last visit.

Sarah and I have offered them the use of our old Suzuki Vitara 4WD and we are expecting that they will head out around the country in it and have some adventures. There's nothing more fun than a road trip with no set plans or schedules. (Maybe Sarah would disagree!)

Health-wise I'm in good shape. Absolutely no cough at all, not even a touch of asthma. Energy levels are as good as the next persons. I even went rabbit shooting last week (don't worry no rabbits were harmed in the making of this blog) and trudged around the hills with no more effort than that of my brother Mark, ten years my junior.

I do get a bit of a back ache sometimes, but I'm not going to worry about it as it comes and goes and usually only in the mornings when my steroid has worn off. The biggest bother is that I can't drink alcohol, and I so want to kick back and enjoy my life now that I'm well again.

..aah but food does taste good these days! My sense of taste, which was hammered by radiation treatment seems to have restored itself to it's former level and I'm eating like crazy from both the steroids and new found enjoyment of eating.

That brings me to weight gain.. 6kg's in one month! Good in that I am almost at my goal weight, but bad in that if it continues I will be 140kg's by the time I finish my treatment in a year.

I shall have to exercise more and eat less. I only want to gain another 3kg's and that should be in muscle as I have lost a lot of muscle over the last couple of years.

OK.. wow what a big update! Later ...Ron