During the early stages of my recovery from Leukaemia I set myself 3 goals.
- Return to health
- Continue spending time with family and friends
- Return to flying
The first goal was of course the obvious and although I have made good progress I can become frustrated with slowly this takes place – especially with my physical strength. I still can’t do a full push-up! But things are improving with steady work. On the positive my haematological parameters seem to be tracking along quite well.
We have enjoyed visits from lots of family and friends and as I’ve said before this is a key part of my overall recovery. Group therapy has a lot going for it!
But my third goal was one that seemed all elusive. However this month I achieved that as well.
I spent a few days flying with good friend Eric Saacks (and instructor Neil Hughes) in Eric’s new Robinson R44 helicopter VH-EXD at Port Macquarie. This was a huge milestone for me. I am still waiting on my medical certificate from CASA (currently being reviewed by a team of specialists!) but I am able to fly under instruction.
The Ups and Downs of a GVHD patient
Not long after my last blog I hit a small snag. I noticed some nasty little wart like lesions growing on my hands which did not seem normal. Being concerned about GVHD I sent a photo to my haematologist, Amit Khot and surprisingly on a Sunday he emailed back straight away to say he thought it might be shingles rather than GVHD of the skin.
A visit to our local after hours GP clinic confirmed it was unlikely to be shingles but an exact diagnosis was not forthcoming.
So after a number of trips to the Dermatologist in Melbourne with two different biopsies of the affected area on my hands I finally have a diagnosis of GVHD related Lichen Planus. (I would point out that Dr Saacks suggested this diagnosis some time earlier!) This is an inflammatory reaction common in immune deficient people. It is readily treated with a steroid hand cream and luckily in my situation this is having effect. My dermatologist had suggested it may have been either Pompholyx or Epidermodysplasia verrruciformis (but advised me not to Google this condition!)
I must admit during the long period to diagnose and then start treating this situation I was becoming very concerned. The lesions had spread over most of each palm and fingers and was preventing me from using my hands for many things.
Luckily I am now moving past this.
At the same time my mouth and lips became quite severely affected by GVHD with Wickhams Striae – white lesions that commonly occur during GVHD making drinking and eating noticeably more difficult. No surprise this time treatment is with more steroids – this time a mouth wash (Dexamethasone) and lip cream. I love my steroids!
I felt like I was about to slip down another large Snake in my life game of Snakes and Ladders!
Over the past few weeks I have also received booster injections for my immunisations. The ‘live’ boosters of measles, mumps and rubella need to wait for another 12 months.
Meeting with Amit Khot
Due to my concerns with the skin lesions and being in Melbourne for appointments with my Dermatologist I have met up with Amit twice now in two weeks (following four months of telehealth appointments). It gave me a chance to look him in the eye and ask a few more tough questions!
At our last consult he confirmed my blood counts were still in the normal range and holding up well – a big relief. Interestingly living from ‘blood count to blood count’ is not such a big thing for me now. I am more interested in improving health and fitness.
For the record my Red blood cells are around 136, White Cells 10.3, Neutrophils 5.6 and Platelets 188. Creatinine is around 76. Magnesium levels had dropped slightly to 0.77 which is a function of cutting back slightly on my 4 Mg tablets a day. I might have to increase them again.
Over the last few months I have noticed some blood in my urine. Amit showed immediate concern for and and has ordered some tests to help diagnose any problems. Urine sample, ultrasound and then perhaps further investigations – ouch!
I managed another joke with Amit suggesting that he now has a new scientific paper in my hand lesions as he indicated in his 25 years of treating leukaemia patients he had not seen GVHD present like this. (I thought I might have to accompany him to his next US conference!)
Overall I have found that my recovery is progressing nicely and being back in the fresh open air of Tasmania has been wonderful. It is great just to get out and about and do some normal things.
What else has been happening?
I have now released my first PodCast! Kennedy Lay my physiotherapist in Docklands put together a short interview during my treatment with him. It takes me through my treatment and experience and may be of some interest to readers of this Blog.
Give it a go. #003 – Geoff Hamilton.mp3
We have been travelling a bit for business and family catch ups and continue to get visitors dropping in from time to time. We love it!
We had a bunch of visitors on the farm over Easter including our ex Rotary Exchange student from Belgium Eugenie Coche and boyfriend Arthur.
Claire performed Bridesmaid duties for good friend Sophie Sutherland at a spectacular wedding in Corryong, in the Upper Murray.
And we managed a 3 day horse trail ride in the Victorian Alps. Not bad for a person who has only been on a horse 4 or 5 times in his life. It was a superb trip with some absolutely memorable scenery – real Man from Snowy River stuff!
And meanwhile back at the farm the new watering system goes in!
…. and the Hamilton Family swings have gone up, yet again!! (53 years after first being constructed by my Dad for Tony, Fiona and me).
And Jan has been busy in her veggie garden.