Last look at the factory for the sick, shrouded in freezing fog.

Back home at last, after three and a half weeks in the mad house. The utter peace of it.


The first nights sleep was very fitful, still institutionalized from the hospital. Tiny snatches interspersed with visions & sounds of the institution: the constant glare of neon lights, the ever present doo-dee-doo bleeps of someones drip needing attention, my arm encased in Velcro & pumped tight to read blood pressure, the single high pitched note of the latest type of thermometer screaming in my ear; and of course the ever present sound of someone close by, coughing their heart out.


Waking at dawn in my own bed; how amazing. Alive for another day - a survivor. Listening to the world outside stirring: 6.40 am and the first cars go gently by, taking their owners to work; and just beyond the window somewhere, the beautiful quiet morning serenade of a Robin.

My friend is back

 


A while later I am discovered by my affectionate old 'Extrapuss' (back from her usual dawn adventures). She settles down on the bed between my knees, purring loudly & staring at me with half closed ecstatic eyes. Then the heavenly picture is complete. Flu racked & exhausted, Christine arrives with a morning cup of tea.

Now there's just this shadow of my former self to restore - down from 10 st to 8.5st. Looks like a lot of bananas, pasta, and Christmas cake ahead and some very slow shuffly walks by the two of us.

Caerlaverock Nature Reserve; with Criffel beyond the mouth of the Nith

Criffel from Glencaple on the banks of the Nith at ebb tide.

It has been so amazing to be whisked away from the confines of hospital these last few days at visiting time. Swap the unchanging air and relentless neon lights for some sunlight and a fresh zephyr.
All these vistas just 3 or 4 miles from the place.  Home made coffee fresh from the flask... shear heaven.

Mad Man caught trying to escape hospital. Happy New Year from the mad house.

Well who would of thought back in August that I'd be writing from Hospital over the Christmas period. I don't recommend anybody to be ill at weekends and as for Christmas holidays - what a joke. What happened to dedicated Doctors: they are only interested in pay and conditions. Labs are closed and New Year is fast approaching. The skeleton crews on duty don't know what's wrong with me and there is no information filtering down to them on which they can take action. Right - that's my rant, sorry about that.

I came in to Hospital a week last Monday with a few odd spikes of Temperature above 38°,  a suspicious tightening in my right chest and a slight discomfort swallowing. Since then my body's gone completely nuts. Lost grip in my right hand, no rotation of the wrist - couldn't pick up a glass of water with it. Then it moved on to knee joints - pain so bad I couldn't stand. Been on Pireton to calm the immune system and Co-Codamol to ease pain and my right hand above my head in a sling.

That pain problem is now calming but my stomach... Complete blockage for days now - that's Co-Codamol for you combined with 3 different antibiotics. One wonders how I would have fared without any damn treatment. I definitely picked up a secondary infection in here. All three guys in the ward went down with it on the same day. Temperature hitting above 40° for a couple of days which was scary and very debilitating.

Don't think anyone's taken my temperature since mid morning... it's now 10.40 pm. Night Night I'm definitly here for New Year. Aargh!

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.

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

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.

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.

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 ?

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.