Thursday, October 13, 2011

Last Post ?

Not sure how many more of these blog pages I’ll write (never seem to have enough time to devote to them, just so busy with ‘things’) perhaps it’s just summer, although more likely it’s because I have been feeling so well. Seem to have got the thyroxine balance sorted to match my present physical state, so no more afternoon sleeps (they were quite nice actually but never had much sense of achievement out of the day).
   
    Today I met my consultant, Dr. Clark at the McMillan Centre in Dumfries: last time we met was 2 months ago. He speaks with wonderful clarity and lays out all the facts in such an understandable way. My chances of survival have increased from 30% to 50% ! The 30% that die in the first 2 years after transplant have died by now so that leaves the 30% MRD’s(Minimal Residual Disease) and the 30% GvHD’s (Graft vs Host Disease) in equal measure. So that’s good then.

    He’s decided not to go ahead with the bone marrow biopsy because there is no indication that further investigation is necessary at this stage. He warned that at some point in the future the clone lymphocytes may find a new form to get past the donor immune system; at that point  a lymphocyte transfusion from the donor would be an option but it would most likely spark off GvHD. But heck ! that’s all in the future and is speculation. The thing to do is just get on with living and take each day as it comes. I still have no immunity to infection and could get ‘blown away’ at any time but my day to day quality of life is great, as long as I can keep out of trouble.

Friday, August 5, 2011



The Summer is always such an infectious whirlwind of activity, sucking one along. I’m still trying to let go of the trivia of everyday living but tempted to indulge in it the stronger I feel.

The vegetable garden has transformed itself from this....



into a colourful jungle...



I’ve allowed so much space for poppies this year that the sugar peas are in danger of being swamped.

The build-up over the last fortnight, to the prestigious ceramic fair ‘Potfest’, was overwhelming but sales made it all worthwhile and it’s lifted Christine’s spirits to have experienced such a positive reaction to her work.
Meanwhile the hospital consultant continues to be pleased with the results of the transplant: haemoglobin almost back to normal, a healthy number of neutrophils, and a chimerism of 98% donor at the last count, about a month ago. The big gap remains in the Lymphocyte count (hardly any) and its associated protein CD4 count (stuck around the 100 mark) - they’d like it to be over 300 before they dare reduce the dependence on all the ‘anti's I’m on just now. However, so far so good, no infections to speak of and managing to keep out of harms way. Fingers crossed. X

Saturday, May 28, 2011

24 hours before we open to the public and the contents of a big glaze firing are on every surface, bases to be smoothed and all yet to be priced.

The count down to the Spring Fling Open Studios weekend is just about up.

The disruption caused by the Heat Pump installation is subsiding and for now the work space returning to normality ( but the domino effect has still some way to go - more on that later !).

At the back of the kiln, where once there was a small table and an old school radiator, there now stands a 90 litre warm water Buffer Tank with shiny new copper pipes. ( It stores the heat produced outside by the Pump - allowing the fan coils mounted inside to draw on the heat when the room temperature drops ).

The down side was that the new Buffer Tank was taking up valuable space alongside the sink and draining board so a replacement work surface was essential. I was quite pleased with the solution - fitting it in between the pipe work. Cutting through the old heating pipes and getting the immensely heavy cast iron radiator out was an entirely different sort of job - difficult and messy but worth it for extra space.

That all happened a fortnight ago. As usual I’m behind schedule writing this. Spring Fling is now upon us. Indoors the showroom has been stripped down, windows and shelves cleaned by Allie and Christine, and then rearranged with new work. My job was to solder copper hanging rings onto the backs of the long dishes and wall hangings and glue ‘D’ rings onto the big picture tiles.

The topiary is trimmed, the grass cut, the showroom exterior walls given a lick of white paint; and the foundry emptied - cleared of accumulated junk - leaves and debris brushed out. Trying to turn it from this....




...into this.


Wednesday, May 11, 2011



Once again I’ve been too busy to sit down and write; week after week of amazing sunshine has been just too tempting. On some record breaking April days the solar panels were generating over 11 kW; it seems like April and May have swapped weather patterns this year.

The vegetable garden digging got finished, seeds were sown, and it is now full of 1” high seedlings - sugar peas, spinach, and lettuce. Having lost all the sugar pea seeds to a pair of voles last year, which necessitated buying another expensive packet, this year I have only sown half the packet and am keeping them under some clear plastic boxes until they’re safely up.

The grass on the newly levelled site of the old pond is coming along nicely and, having got into the swing of cement work for the Heat Pump, I created a few steps over the bed rock up to the new level and some steps on the other side of the rockery where there had been a treacherous icy slope in the winter. Also some patching up of the wall at the showroom entrance prior to painting for the Spring Fling Open Studio Weekend. The countdown has begun !

I had promised to do some repair work on the boat if there was a fine spell in the Spring. It got holed by another boat when racing 2 years ago (pre-transplant!) and I had only been able to do a temporary patch on the outer skin at the time. The repair involved cutting a circular hole in the floatation tank to get at the bow section interior with resin matt and then fitting a new hatch cover to seal the hole. Great to have got that done whilst the boat was perfectly dry. We are all looking forward to getting back out on the water this summer; there’s something very special about being under sail and free of the land.

After a bit of a hiccup with a faulty solenoid ( which failed after only 24 hours ) the Heat Pump is finally up and running but the weather is a bit too warm now to really put it through its paces. It’s much bigger than I had imagined: the courtyard looked as though someone had dumped a fridge-freezer there ! Something had to be done to soften its appearance; edge on it’s proportions made me think of a massive Egyptian block of stone so I worked on some drawings.

I am seeing the consultant Dr. Clark, bi-monthly now. We met with him last week and got the chimerism results from the March meeting - 98% donor! Prior to that it was 90% so things are looking very good. The latest blood results showed the haemoglobin count is still steadily building but I was reminded that my CD4 count was only 105, which is still in the Aids category as far as immunity to infection is concerned. I need to be above 200 before all the protective drugs I’m on can be eased back; and I will probably never reach a normal count of 600. So life goes on, but with a sensible precautionary air. The Monday to Friday drumming break at Comrie in Fife the previous week was a success but I had to pace it carefully in order not to burn myself out. No way I could keep up with the Glasgow boys, Vanessa and Co playing rum ping-pong and Cuban songs at 4am, but great to be a part of it.

Sunday, April 10, 2011




The gaps between these blogs are getting longer. Perhaps it’s a sign of my preoccupation with other things; trying to squeeze in as much as possible in the slots available.

Getting a dose of flu didn’t help either. High temperature on a Saturday is not recommended.... NHS GP’s don’t do weekends anymore. I’m supposed to hit the alarm button if it goes higher than 38°C and it was 39, but with such timing (and previous experience of hospital admissions at the weekend still fresh in my mind) I stuck it out and by Monday was coming out the other side. Although it took several weeks to regain my strength.

When I told this story to my consultant, Dr. Clark, I got a rap across the knuckles: he said I was lucky and not to do it again.
I had bearly recovered from that episode when Christine came back from a trip South with a sore throat; it inevitably found me and left me drained yet again.

However there were interludes in between all this - little 2 hour bursts of energy usually in the late mornings - when I got some sense of achievement and progress.

The hole in the middle of the garden that was supposed to be a pond for instance - filled in with boulders, levelled with earth and sown with grass seed. Been thinking about doing it for years. What a feeling of space it has created. With only a couple of hours a day available these jobs can take a while... but ‘slow and steady’ gets there in the end.

The vegetable garden: now weeded, composted and half dug over. Seems to have been raining for days.... can’t get back in to finish it, and get the spinach seeds sown.

Some cement work and paving in the back courtyard around the newly constructed base for the Air Source Heat Pump . [It was supposed to have been installed weeks ago and is beginning to drag on a bit. The workshop area around the sink and back of the kiln has been cleared out for ages and they still have not finished. Seems like one day a week for the last five. Most of the plumbing is in place but no electrics yet. Christine would really like her pottery space back to normal; the chaos is beginning to get her down].

Oh... and the Pottery accounts for 2010/11 got done - whenever I needed a sit down job or it was raining. Wonder when I’ll be working in clay again ?

Friday, February 4, 2011

January seems to have whizzed by but lots of things have happened.

Firstly the meeting with my consultant, Dr. Clark: for the results of the very accurate bone marrow tests. He was very pleased: there was only one Leukaemia cell in every ten thousand. I was given the impression that they do not achieve that degree of ‘cleanup’ in very many patients, and that my two immune systems should be able to find and deal with that relatively low number of rogue cells without them causing problems. My chimerism seems to be remaining fairly stable at about 10% ‘old me’ and 90% ‘French’ donor; apparently the actual percentage can very widely from patient to patient, the important thing is that it remains settled - so the likelihood of GvHD is minimised. When I decided to have the bone marrow transplant I knew that life beyond it might be dominated by Graft v Host Disease; it is amazing that I seem to have dodged it and that my quality of life now is as good as it is. They did say the match was a ‘very good’ one but I thought they were still hedging their bets.
Haemoglobin levels continue to rise slowly and are now round about 60% of normal... enough to do quite a lot; usually more than is good for me. Seems to take several days of feeling exhausted if I over do it !
At my top-up of Pentamidine session yesterday (3rd.,Feb.) the talk was centred round my CD4 levels. If they get above >200 the Pentamidine may no longer be necessary. What are CD4 cells you may ask? They are little clusters of a protein attached to surface of white blood cells known as ‘helper’ T-cells; they in turn stimulate lots of other cells in the blood stream to start fighting an infection. A normal healthy person would expect to have from between 500 to 1,200. If I can reach somewhere between 350 - 500 I will be a lot less susceptible to pneumonia and the Pentamidine can stop.
Blood is so much more complicated than I ever imagined; the human body is a miracle of evolutionary bio-engineering.

Way back in the Spring last year, when I was regaining my brain but was a bit of a physical wreck, I started looking at all possible ways of Energy Saving for the house and workshop. Alongside improving insulation (now completed) I also weighed-up the pros and cons of micro energy generation using wind, water, or sun.
We live surrounded by hills with the addition of a large Scotch Pine in the SW corner of the garden so the prevailing wind was very unlikely to ever produce enough power to justify the considerable capital cost of a ready made system. Access to a water supply with a good head on it was not really possible (although I did toy with the idea of using the stream across the road from us !) and again capital cost was a factor against.
With a SW and SE aspect on the house and workshop roofs, Solar Power seemed to be the only method that might be possible; BUT only because of government incentives - the pay back period without them was practically the life of the system.
So many months later, having worked my self through the bureaucracy of the governments Energy Saving Trust Loan Scheme, and the practicalities of assembling quotations from approved Microgeneration Installers; here we are....

An array of 10 Solar Photo Voltaic panels sitting on our roof happily generating over 1 kW of power in the winter sun. It is quite exciting to speculate on what the long Summer days will bring.
Ssh... don't ask about the shadow on the wall, I'm not supposed to be there.