A little bit of pain never hurt anyone..

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!

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..

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

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

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