April, 2009 Christine writes:
very much like to thank you all for the overwhelming kindness and support
you have sent to Keith and I over the last couple of months - we feel
very lucky to have such good friends.
Easter was wet here in Brisbane but since then the weather has been glorious - cool, crisp mornings and cloudless blue skies during the day. Temperatures about 15 - 25. Sue & Mick, our neighbours on Celia Mary, have been wonderful - we've enjoyed many great meals together - and they've lent me support when I've needed it.
June, 2009 Keith writes :
About a week ago we waved goodbye to James and Adelle on Sula II. It was really great to be at the start of their adventure; compared to the "grey" cruiser brigade, it is so nice to see such young people realising their dream. We felt honoured to be part of the preparation and imparting our knowledge and experience to them. It also brought a pang of longing to get back cruising again and an even greater determination to finish our slow circumnavigation. The hiccup of our enforced halt is a real pain.
The career of "Professional Patient" is not for me! I had a little difficulty in deciding what to talk about in this newsletter, but considering the popularity of TV programmes such as "House", "Scrubs" and all the other medical melodramas, I decided to provide a detailed update on progress.
My three month review, including CT scan and bone marrow biopsy, came up 4 weeks ago. We arrived at the appointment with a positive attitude - my spleen has gone back to normal size and I haven't required a blood transfusion for a couple of months - and I feel well! The actual results that day showed there had been a 20% improvement in my condition - which we thought was a major milestone. Unfortunately, the doctor didn't think this was enough - apparently he had expected at least a 50% improvement He felt we should adopt a more aggressive treatment - their experience showed that if they can achieve a "deep" remission, in general it would also be a "long" remission. OK things are now creeping out of the woodwork and we are starting to get more information than we need; like, my bone marrow was so jammed with rogue cells that the first biopsy 3 months ago had so few "good" cells that they couldn't get a useful sample! The second biopsy still showed an 80% "rogue" cell involvement With great reluctance we agreed I should try the new regime. This is a multi-stage effort; firstly some intravenous biological agent (Rituximab, monoclonal anti-bodies). These attach themselves to the rogue cells which are then attacked by my severely-depleted immune system. Secondly, a couple of chemo drugs Fludarabine and Cyclophosphine. Plus a few others to counteract the side effects. All these tablets are taken for 5 days a month. I have had one course so far - results unknown at this stage.
How did I cope? Yuck is all I say. After the morning of the first IV treatment I retired to bed a shivering wreck! After a few hours Christine took my temperature which, at 38.4°C, gave cause for concern. We figured (from reading the literature that came with the Rituxmab) that I was still suffering a slight 'rejection'-syndrome to the treatment and that the paracetamol and cortisone administered at the hospital had worn off. We thought a couple of paracetamol should do the trick, but our instructions from the hospital required that we first check with them... We phoned the oncology ward and, on their insistence, 20 minutes later we had a welcoming committee at the Accident and Emergency Department! I was taken straight through to a separate bay and had my blood pressure, temperature and pulse taken. They took a blood sample to test for infection, sent me off for a chest x-ray, and attached a heart monitor to my chest! All I wanted was some paracetamol! Eventually they rang the oncology registrar who agreed I could take some paracetamol and that there was nothing seriously wrong. We were allowed to leave and take a taxi back to the boat Next day I felt much better and started my course of chemo tablets. The morning ones seem OK, but the lunchtime ones knock me out for a couple of hours. At my checkup appointment last week, we got agreement that next month I can take the lunchtime tablets in the evening and sleep off the effects over night! I can also take paracetamol and prednisolone on the day of the MAB therapy if I get the same reaction.
Anyway, enough of the grim stuff. We have managed to have some fun - Rob and Gemma (Orinoco Flow) came down to Brisbane again and we arranged to do a dinner/theatre show. Mick and Sue (Celia Mary) came too and we all had a ball. The show was a lewd comedy called "Stiff" and was based in a funeral home. Very amusing and a great night. We borrowed a car and drove up to Scarborough Marina to visit Brian and Jackie (Songster) and Willie and Gloria (Linger Longer) who have now sailed north towards Indonesia - have a good season, guys! Peter and Toni (Tigger) are back from their trip to the UK and are madly getting their boat ready to go cruising again this year.
Sue (Celia Mary) and I have been enjoying preparing meals for Mick and Christine. Sue's Thai Green Curry is fantastic and everyone enjoyed my Fish Pie followed by 'Sticky Date' pudding with butterscotch sauce. Mick and Sue took us to the 'Thai Boat' restaurant out at Manly and the food there was superb. So I've been using my spare time to enlarge my menu repertoire!
We are enjoying our daily walks, the winter climate is very benign with "Simpson" blue skies nearly every day, Christine is still applying for jobs. She has also been writing articles and has had two accepted for publication, so far. We'll let you know when and where! Some more articles are in the pipeline.
The Australian Immigration department have granted me a Bridging Visa so I could stay in Australia beyond 3rd June when my tourist visa ran out - and have granted me the right to work! This, at least, relieved one of our worries. Although a long term visa is still undecided, due to the health issue.
Thanks again everyone, may all your problems be little ones