May 1st DAY149 – May21st DAY 169
Over the bank holiday weekend at the beginning of the month we went to Brighton to stay with friends and while there had a look at Brighton Canoes to see what sea kayaks were available. We particularly liked the Easkey with 2 sealed hatches and skeg and have now gone a step further and ordered two of them! They are to be delivered to Poole (Bournemouth Canoes) which is part of the same company. This is most unusual for us – we never buy anything new! I feel though that we rather deserve it as kayaking in the Outer Hebrides was on the agenda just before I was diagnosed and so it had to be postponed. Our old kayaks are slowly disintegrating so it is time we moved on.
Some time ago, shortly after the transplant, when I suggested that we would like to go kayaking in the Scilly Isles in May or June, the doctor I’d spoken to looked taken aback and exclaimed,
“You won’t be fit enough to kayak in May or June!”
So we will see.
May 5th
Set off up to Carlisle by train to meet up with a friend and spend a week in Scotland in her camper van and staying in another friend’s house. Train travel isn’t really recommended due to the risk of infection from other passengers but I made sure I had a seat to myself and the journey went well. I was a little concerned about crossing London carrying a heavy bag (you need waterproofs and wellies for a week in Scotland in May) with a connection to catch but it all went well and we met up and had a week of superb weather. We were staying in a very quiet coastal area, the sea was a calm Caribbean blue and it was like being off the planet for a while – very good for the soul. Even the short run-in with the Police didn’t detract from the week – no I promised I wouldn’t mention it.
Generally we spent the time exploring the shoreline but one day we set off along a rough track on mountain bikes. There were 6 miles of track and a further mile to walk so a round trip of 14miles. I have to admit to a fair bit of pushing uphill but it was a great day out.
The return journey through London coincided with rush hour – and at one point I thought I’d have to get off the underground to breathe! I was now carrying a small tree as well as a heavy bag so that didn’t help! At last, unscathed, I reached home.
The garden was crying out for attention but I had to first of all prepare and send off some paintings to an exhibition in Scotland. Their weight took them into the higher price bracket but I had put so much effort into them that I decided to send them anyway. If they don’t sell I’ll be a fair bit out of pocket but you have to try these things!. I woke up in a sweat in the middle of the night following realising that I hadn’t stuck a fragile sticker on them either. Memories of an old Blue Peter film showing what happens to parcels in the post did nothing to allay my fears.
So back to the gardening. By the end of the day I feel tired especially if I have been moving large tubs and rocks around but I reckon it’s all part of my back to fitness regime.
I had another 2 days climbing, one with a novice friend and another with my climbing partner. I’ve managed a few more easy leads but have also struggled on routes that I would have found straight forward in the past so a long way to go yet.
The good news is that for the last few weeks, other than not being up to the mark as regards climbing and walking/cycling uphill, I’ve seen myself as “normal” i.e. not below par. It’s true that I still need a lot of sleep at night and find it a struggle to even wake up at the time when I used to be at work in the morning but am not sure if that is the AA or just a downhill slide into a more slothful existence.
I feel that I have to apologise to my followers for the huge time gap since my last blog. However, this is actually good news as my excuses are that a) the weather has been too good and b) I have been too busy doing “stuff” to write it up!
I shall continue to write it in monthly chunks but it is actually September the 27th when I am writing up the last half of May! For that reason the information will be correct but the timings may not be exact.
May 22nd Day 170 – May 30th Day 178
The kayaks duly arrived and after picking them up we were mad keen to get them on the water. It was a blistering hot day. I got changed into my cozi and we just had to make a quick thigh brace adjustment to the boats before putting them on the top of the car. Although I thought it would be a two minute exercise, lining up 4 pieces of drilled plastic and threading a bolt through to be secured with a nut, because it was being done blind – by feel only, it took rather longer. In fact it took nearly an hour.
I had been aware of my back getting hotter but was reluctant to go and apply sun bloc as this would make my hands greasy and my task almost impossible. I didn’t usually have a problem with sunburn, tending to tan gradually but that afternoon I realised that there was a very good reason why the docs had told me to use Factor 50 sun bloc; through my treatment/ drugs I was now much more susceptible to burning ...and that’s what I did! My back was scarlet and painful and worst of all was impossible to hide from the doc’s scrutiny. I was severely reprimanded by way of a cautionary tale of a woman patient at the same stage of recovery as me who through being sunburned contracted graft-versus-host disease and could not be saved – she died. The good news was that in my case it didn’t trigger gvhd but I felt very sheepish as each of the four consultants/ doctors lectured me on the subject when they saw me.
The doctors looked again at my chimerism. Full donor chimerism means that 100% of bone marrow blood cells are of donor origin and this is the goal. However I have only partial chimerism at the moment ie I am still producing cells of my own so that 90% of my bone marrow and blood is of donor origin and the other 10% are still being produced by me. To increase the percentage to 100 I may need to have infusions of donor lymphocytes. (These would be taken from the extra stem cells which were harvested from the donor at the time of the transplant).
In order for the lymphocytes to have a chance to act without being rejected it will mean that I have to come off cyclosporin, the immunosuppressant drug. This will need to be done gradually and when I am off it completely then I can start to have the lymphocyte infusions. Initially these will be given in small doses and will be administered at 6 weekly intervals until the chimerism rises to 100%
Anyway, the kayaking was good. We only went for a 3 mile trip and found the boats to make quicker progress through the water but be a little trickier to manoeuvre and be more unstable than our old ones.
There was good news too on the painting front. Two of the three paintings I had sent to the exhibition in Scotland were sold. Complete strangers rated my work! Things were moving on!
