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.

What a strange November !

One day it was Autumn, the next it was mid winter.

I got the pottery workshop insulation done just in time. I’ve never known such a cold snowy November and it looks likely to continue through the first half of December. Inigo helped me with the underfloor insulation by crawling below the joists and measuring the spacing while I cut strips of 50 mm thick polystyrene sheeting to jam up between. What a noticeable difference that made.
Then I fitted some made-to-measure sheets of clear Acrylic, with magnetic strip edging, to the windows - very neat secondary glazing. This was followed by some very careful draught proofing all round.
Last big job has been to triple the depth of the loft insulation. More than 20 years of accumulated debris from the plaster and slates above (+ Long-Eared Bat colony’s droppings) had compressed the existing blanket to about half of its original depth. The whole granite clad, 200 year old workshop area is now 5 or 6°C higher than it would have been without it; last night it was minus -7°C outside but a quite snug 13 to 14°C inside first thing in the morning. Most impressive !




Just a day or so before November drew to a close, the cloudless blue skies beckoned us. The walk began with an unusual view of our house - normally hidden from this angle by the leaves.

There were remnants of Autumn colour still persisting here and there.

Just below Moyle Hill summit the view over the Solway was magnificent; the new wind turbines criss-crossing along the watery horizon and the white mountains of the Lake District beyond.

Taking me and a camera on a walk is a bit like walking a dog; you have to be patient and expect frequent stops. Although having said that, it was Christine that stopped to point out the mountain bike tracks as we began our descent.

The low sun was highlighting every depression as we made our way home.

It’s now only the end of the first week of December and the icy grip of Winter seems complete. Heavy snow and - 12°C last night. Shortest day less than two weeks away and then at least we can look forward to the coming year.

Screel Hill

Well the haemoglobin count must still be rising - I climbed up Screel Hill today !

When I drew back the curtains this morning a cloudless blue sky was beckoning - the second this frosty weekend. I was going to finish insulating the underfloor of the workshop with polystyrene sheeting, while Christine was out of the way, but heck it was Sunday and sometimes you just have to let go and get off the premises. And besides Christine was pretty keen that we do something together for a change instead of leaving ‘the old hermit’ at home.

The day was completely windless as we set off from the car and headed up the forestry track. We were no sooner round the first bend and into the sun than we had to stop and peel off our clothing down to shirt sleeves; we stayed that way until just below the summit.

The visibility was fantastic: Southerness lighthouse could be seen to the East beyond Kippford, with all the Lake District mountains as a backdrop across the Solway Firth.

To the South West the whole of the Isle of Man was spread out along the horizon, 35 miles away across the Irish Sea.

Inevitably as we got to the summit a chill breeze appeared, so we did not linger beyond a quick photo of our hero conquering the mountain. A bank of cloud was blowing up from the South and as its first vanguard started to play peek-a-boo with the sun the temperature plummeted; time to set off down for shelter and a comfortable seat with hot coffee and a sandwich.

By the time we had rested and eaten, the grey slanted streaks of a distant shower were beginning to obscure the Isle of Man and the breeze started to pick up. The pockets of sunlight danced across the green fields beyond Auchencairn and the Larch and Bracken glowed.

After 2 days of frost the pine needles were falling like snow as we descended through the wind stirred trees. As we emerged onto the forestry road once more another shower was casting a rainbow over our house, tucked away somewhere in the middle distance.

As we tucked our rucksacks onto the back seat of the car and removed our jackets the first rain drops fell on us and within 200 yards of leaving the forest gate the heavens opened. Now that’s what I call squeezing the best out of the day.

Things are beginning to look a bit more like normal at last; lets hope it continues that way.
Monthly dose of Pentamidine coming up this week, and next week they will be taking a sample of my bone marrow to see if they can get a few clues as to what is going on on the inside. Should be interesting but I will not find out until after christmas.

Has the whole of September really slipped by ? I keep trying to do more than my body will allow... bursts of frustrated energy followed by a day or two recouping.
The month started off with a big venture out into crowded places for the first time since the transplant. Christine and I went off to Kendal for a weekend of Samba playing with a large group of drummers from all over the country. We stayed nearby with her brother Philip and wife Chris, and her sister Elizabeth and son Patrick came up from Nottingham. They all took part. We practised a new piece on the Friday evening and a large part of Saturday and Sunday morning before taking it to the crowded streets and finally ending up on stage at the Old Brewery Arts Centre.
To survive the long practice sessions I had to sneak off back to the car and lie down and sleep for an hour after a quick lunch, but the whole thing was so enjoyable and challenging and totally enveloping it was worth every minute of it. Inevitably we ended up with sore throats on the way home on the Sunday evening.
This turned out to be a rather nasty, energy sapping cold which lasted a full week (or a little more in my case) but no fever or other complications so well done immune system ! It was a great excuse to sit quietly and listen to the recordings of the weekend, transcribe the music, edit the bits on my laptop to make up a CD, and finally work out what everyone else had been playing while I had been focused on learning my own parts.
Meanwhile outside in the garden Autumn was moving along rapidly: a tree full of Victoria plums beckoning. I planted the orchard over 30 years ago and feel a strange obligation to harvest its fruits. Perhaps something I learnt from my mother and her experiences of the city under war conditions back in the 1940’s. Maybe I’m just a child of my time, an old hippy wanting to stay close to what it feels like to produce a little of your own food; wanting to keep in perspective how remote we have become, as an urban society, from the natural world and the simple basics of keeping warm and well fed.
So to act out this fantasy I made plum jam with half the crop and bottled the rest using the last of my stored honey (from my bee keeping days) as a syrup. By then the damsons were ready for similar treatment; and meanwhile the eating apples were beginning to drop. They have now been picked, bagged and crated and should feed us throughout November. Disease on the plum tree meant some major pruning was needed and this lead to the chain saw coming out and in turn lead to a sort-out of the log pile for the winter fuel which was clogged up with various lengths at different stages of seasoning. Is there more ? Well there was the courgettes and sugar peas but enough ! Why do I do this to myself ?

Thursday was Dr. Clark’s clinic in Dumfries and the first time I had seen a consultant since the end of August. I had been a little dismayed back then to learn that my chimerism had become only 89% donor but it was 90% this time so it appears to be fairly stable. I did not think it was possible for the two systems to live in peaceful co-existence but it appears I was mistaken and my chimerism may settle down to this particular percentage balance for a considerable period. As long as the lymphocyte count remains low the chances of the CLL returning also remain low.
Second positive news was that the haemoglobin count was still rising steadily and was now 124, so most encouraging. All the other blood results were similarly positive. I do NOT have to go up to Glasgow next month and I next will see Dr. Clark in 2 months time.... they must be pleased with progress ! I keep wondering what that snail/slug? was contemplating as it did its midnight dance.

Autumn Mood

The last day of August: just back from the Glasgow clinic and time for a reality check.

In my rather simplistic thinking I had begun to believe that the biggest hurdles had been crossed; the minor dose of Graft vs Host Disease was behind me, my chimerism had reached 100% donor, and my haemoglobin had stopped dropping and was beginning to rise very slowly. It seemed that with 10 months since the bone marrow transplant I was well down the road to recovery, however this is a road of hidden potholes and the possibility of the occasional Taliban IED.

Having a ‘Reduced Intensity’ Transplant has meant that a very small amount of my own bone marrow has survived the onslaught of chemo but not enough to show up in the chimerism test; hence 100% donor. The latest test is now showing 89% donor, this will need to be monitored regularly. If the trend is for the donor cells to steadily lose ground, then they will need a boost of donor lymphocytes. My body is a battle ground.


1.
They do not want to give a lymphocyte transfusion yet because there is a strong risk it will spark off another dose of GvHD, of unknown intensity. However the chimerism balance may tip to the point where the possibility of the leukaemia returning may outweigh the GvHD risks.

2.
In addition my consultant reminded me that my immune system is still severely compromised: it is only 1/3 that of someone suffering from AIDS. Any major ailment could blow me away so I have to remain vigilant.

3.
The fight between the donor blood group A+ and my old B+ system means there are unusually large numbers of casualties on both sides that need replacing. This is putting further strain on the body which needs feeding with the right raw materials. Increasing the folic acid intake should help, (and not overdoing things in day to day activities, which is always tempting).

What a business ! And meanwhile the seasons march on: Autumn is in the air.

I had intended to write at Midsummer but the days seem to have slipped by and suddenly June is gone - the broom was spectacular this year. It’s an indication of how preoccupied I have been (which can only be a good sign !) and of how incredibly nice the weather has been. More energy and mental alertness - partly I suppose, as a result of the Thyroxine kicking in and partly the fact that I am now 2/3rds through the year they said it would take to recover from the transplant.

Outside the vegetable garden is looking happy now. The first sowing of sugar peas was a write-off.... a pesky field vole, living in the dyke and overlooked by the cats, dug up and ate most of the row before I realized what was going on. The courgettes have loved the warm June weather and we’ll probably be eating the first fruits by the end of the week. Home grown lettuce has been on the lunch menu for about a fortnight and we’ve had a good few portions of spinach over that time too. In fact it’s beginning to bolt and a second row needs sowing.

The birch tree to the south of the house was casting rather too much shade for out-door lunches so I made it a two day project to take 15 ft off the top of it. Didn’t have the energy to do it all in one day, and Inigo helped me with the thickest boughs on day 2. A few days of hot sun and the brush wood from it was ready for the bonfire - baked potatoes for supper that evening !

For quite a few weeks now I have been reviewing our energy use and examing ways to reduce it and possibly generate our own from renewables. It’s been a good way to keep my brain occupied while my swollen legs stay horizontal. The government grants for domestic properties have vanished but there are business loans available and incentive schemes to reduce the payback periods. The money that’s in the bank just now is earning so little interest I’m sure we can put it to better use. I have got a quotation from one company to put a heat pump into the workshop and fit solar PV panels (expensive !). Next week I have a meeting with a man from the government’s ‘Energy Saving Trust’. I have had to work out where we can improve insulation - roof, windows, and underfloor - and get it costed. I’ve been under the suspended wooden floor of the workshop, sliding on my back, to see how much area it is possible to cover with polystyrene. I bought one sheet for a trial run and cut it into sections to fit between the joists; I was pleased to confirm that it did look possible.
That project alone should keep me out of mischief for months in the autumn.

Meanwhile the 29th July - Potfest in the Park - looms closer and Christine is trying to get my brain focused on the fact that she needs a couple of plynths making for the display of some of her new work. The days seem so short when I am still still crashing-out for a sleep every afternoon. My damn batteries are still not carrying much of a charge to keep me going all through the day. Oh... and I got another dose of C.Diff this week... Aargh !!

The month of May has drawn to a close. The last three days have been the ‘SpringFling’ open studios weekend and I have never seen the pottery so busy. On Saturday and Sunday poor Christine and my sister-in-law, Chris were rushed off their feet with an endless stream of visitors. Sales were spectacular; far in excess of previous years.

I was ordered in no uncertain manner to keep out of it. There was little I could do to help other than organize the occasional cup of tea and make some lunch time sandwiches to be eaten on the run. My legs became badly swollen last weekend and have remained like tree trunks all week; I’ve had to keep them horizontal as much as possible. Also the slightly raised temperature business has continued this week but nothing like as high as the previous week. The miracle is that I have not been in hospital for the last fortnight; the medical team really began to take it more seriously and have been running dozens and dozens of tests trying to eliminate possible causes. I’ve had a chest X-ray and CT scan but all as an out patient; they’ve sent blood samples to Oxford and others to Glasgow for specialized tests. They are being amazingly thorough. The end result will probably be to conclude that it is Graft vs Host Disease (GvHD). The timing of its start, just as the immuno suppressant Ciclosporin came to an end, would seem to fit. A little bit of GvHD is good; with a bit of luck the new immune system will clear out any remaining Leukaemia and get rid of my old system which had become tolerant to its presence. Hopefully the GvHD will not continue at a high level or they will have to restart me on an immuno suppressant. But if they do it will not be one as strong as Ciclosporin.

One interesting fact has been thrown up by all the tests: my thyroid gland has become very under active. It may be the cause of the swollen legs and general feeling of tiredness. A course of Thyroxin should sort that out and then....

....maybe I can start working on my fitness again. The haemoglobin level seems to be holding steady at about 104 - not exactly brilliant - but enough to get by without a blood transfusion. Roll on the next 6 months ! Phase 3 here we come.