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.

As one set of physical problems gradually fade something else pops up to replace them !! It seems I’m in an endless exhausting cycle which has gone on for weeks and weeks. First it was the Noro Virus, then the C.Diff bug, then the drug side effects, now I have some mysterious fever - probably viral - which has so far lasted 10 days but shows no sign of abating. They started me on penicillin VK on Tuesday but that has made no impression on the temperature after 4 days so not very hopeful it’s going to make much difference.

However the good news is that it is not total wipe out. It’s not a fever so high that all you want to do is languish in bed shivering. It starts off the day up a little and only as the day progresses does it get steadily higher. When it hits 38.5 C (101+F) in the early evening I start to get shut down and need my bed. So life carries on the rest of the day as long as I don’t stress the system too much (I have to sleep in the afternoons still) - it’s running with it’s batteries permanently flashing ‘low power’ and seems to need every ounce of ‘juice’ to fight what ever is going on in there. After over 6 months on immuno-supressants they have finally come to an end this week; but this rather pathetic new body I’ve been given hasn’t got a clue how to fight infections yet. This is it’s first practise run at how to do it all by it’s self; it may take a while to get it’s self organized.

Meanwhile Spring progresses quickly. The procession of the trees from the winter underworld is almost complete and all are standing in attendance in their greenery awaiting the king and queen - the Ash and the Aspen - to make their stately appearence.

Well last week proved to be a bit of a struggle. The drug (Metronidazole) took three or four days to calm things down but I have to take a full 10 day course to reduce the risk of re-infection. The trouble is that the drug appears to be causing unpleasant side effects; dizziness, nausea, watery swollen eyes and a general lack of energy. At least I think it’s the drug - they did not want me anywhere near the hospital last week in case I brought the C.Diff with me, so no blood tests done for a fortnight.

I would have liked to have been feeling a lot better than I was for the trip up to Edinburgh to hear Rokia Traore, but despite the dizzy feelings I was rocking in my seat to her music; a brilliant performance by her and her excellent backing group. (Unfortunately the support group who came on in the first half were a complete embarrassment with no stage presence whatsoever but at least I could keep my watery eyes closed for most of it).

It was suggested that I should start taking Domperidon, the anti sickness drug, to see if it reduced the side effects of the first drug; so I’m trying it for the rest of the course. Too many damn pills for my liking; can’t wait to get off this cocktail. Tomorrow will be the last of the daily ciclosporin, it is then reduced to every third day for the final fortnight. I suspect that the watery eyes business may well be a manifestation of GvHD and nothing to do with the Metronidazole . If it’s not one thing it’s another; but still there is life at the end of the tunnel. What a long drawn-out business this is ! Just over half way now (6 months) and probably more surprises waiting round the corner.

I saw the first pair of swallows arriving a couple of days ago; very late this year. Meanwhile, in the glazed link between the pottery and the house, the first cactus bloom has cascaded over Christine's 'Acrobats cake stand'.

May 1st. - Spring really getting underway at last. Almost a fortnight has gone by since I got out of hospital; felt rubbish for first few days after 5 days confined to a wee hospital room hardly big enough to swing a cat. I suppose I should have tried to exercise in it somehow but it wasn’t very conducive and I wasn’t feeling all that brilliant anyway.

However a bit of fresh air and a gentle bit of pottering around the garden soon revived and de-institutionalized me. The visit up to the Glasgow clinic the following Monday was fairly routine; recommence reduction of the ciclosporin was recommended. Another 3 weeks or so and the immuno-suppressant will be stopping completely.

The 2 units of blood have been making me feel a lot better; so nice to have enough energy to walk up the hill without gasping. Even tried a short loop of the mountain bike route (pushed it up the steep bits - didn’t want to overdo it first time out). The new grass is suddenly enriching the green fields...
and the first birch leaves are showing....
.....meanwhile the ash remains a ghostly skeleton.

Unfortunately, mid way through the week, the gut problems reared their ugly head again. I held off for nearly 36 hours but Christine insisted we left it no longer. Tests showed it really was C.Diff this time; so I’ve been started straight away on a 10 day course of Metronidazole which should slow the little blighters down a bit. In a normal person the other gut bacteria would keep them in check but my internal workings are far from normal yet. However, I haven’t had a temperature with it, so as long as I can keep my self hydrated it shouln’t cause too much of a problem - more an exhausting inconvenience.




Way back in early February we booked seats for a concert in Edinburgh to hear Africa’s Rokia Traore. The fourth of May seemed a long way off then but next Tuesday sounds suddenly close. Hope it all works out.

Bags are packed and ready for off. I’m leaving the hospital tonight and heading for home. Yipee !!

Temperature has been stable for about 3 days and stomach beginning to settle down. Got to come back for a follow up here, at the Thursday clinic, and then up to Bone marrow clinic in Glasgow a week today.

Getting out just in time.... beginning to feel like a caged wild animal.

Well fancy that !! I’m back in hospital again, looking out over the Galloway Hills.

Got a slight fever on Wednesday evening after spending several hours pottering about in the garden. Did I over do it again ? I was on my legs for a fair time. Was it sunstroke or was it connected with a little piece of wickedness from earlier in the week or none of the above? Anyway, a few phone calls later and I was packing my bags for an overnight stay in Dumfries Royal Infirmary.

Christine and I left the house about 9.30 pm for the half hour journey into Dumfries. She set off back home about 12.30 am but they were still messing about connecting me up with antibiotic drips well after 3 am. It’s very nice to be so well looked after but utterly exhausting when all you want to do is lie down and sleep. But that’s just hospital admissions procedure; it always seems to take a long time.

Day 1: The following morning my haemoglobin count was 81. The Doctor in charge decided to give me a blood transfusion - two units of type A. Quite exciting to be given type A for the first time it’s always been type O up to now. A real sign that my new donor cells are settling in and taking over. Good bye to the old Rodg.
Although my temperature had subsided a little it was back up again in the morning so, with a bag of blood in my hand to a line in my arm, I was transfered from Admissions Ward 7 to Haematology Ward 10. Having had only 4 hours sleep I was feeling a bit rough whatever else was going on inside me. I snatched what sleep I could but there were staff coming in every 20 mins disturbing me for one thing or another. It was only after lunch that an extended period without disturbance occured and I went out like a light, dead to the world for about 2 hours. I felt refreshed by it.
Examination of tests that had been done on samples I’d left last week showed I did have a stomach virus - norovirus. Other tests were underway. I was definitly in for a second night.

Christine dropped by in the early evening and left me with the local paper which I read from cover to cover while the beautiful evening light faded. I managed to get the nurse to disconnect the transfusion line long enough to get into my night clothes and wash, then I crashed out on the bed and they were free to do what they liked to me. I remember little else until the first stirings in the corridor at 5.40 am.





Day 2: Midday. Big Chief Doc. wants me confined to my single room in case I still have norovirus or have CDiff. Says it maybe GvHD or a combination of several things: at the moment they’ve no idea. Definitely here for a third night. Damn ! the weather’s glorious; I want to be outside in the fresh air. Sampling this volcanic ash that’s coming from the Iclandic volcano and closing all the airports.

Almost 4 weeks since my last posting; they are becoming more and more spaced out as I perceive less and less change. In fact these last couple of weeks feel as if I have been going backwards but it’s only a stage to be got through and I should come through the other side OK. At least Spring is moving forward even if I’m not. The catkins of March have been superseded by April’s blossoms: The Daphnia is scented amongst the Primulas while the Daffodils have missed Easter this year and are only just underway.

The ciclosporin levels have continued to be reduced by 5 mg each week and are now less than half of what they were. It’s really taking the brakes off the immuno-suppressant and is giving a bit more space for the new cells to start taking over. However, being the container for this battle ground is proving to be not particularly pleasant for planet Rodg: headaches, flaking skin, diarrhoea, and this week, a sudden drop in haemoglobin. Liver tests done at Dumfries today show a rise in Alk. Phos.(ALP) and GammaGT and ALT. Not sure what the implications are of that ( might account for the upset stomach ?) but I’ve been told to sit tight for a week and wait for a decision from the Glasgow team next Monday. A little bit of Graft vs Host Disease (GvHD) is supposed to be good as long as it doesn’t get out of hand. The aim is to give my new French stem cells a little more leeway to start operating properly, allowing them to seek out and overwhelm my own remaining cells, including any indolent Lymphocytes still lurking in the depths. I was warned before embarking on this lark that the price of staying alive ‘might’ involve permanent GvHD. Let’s hope I’m one of the lucky ones and it remains mild and doesn’t last too long.

At last week’s meeting with one of the Glasgow consultants I was cheerfully informed that at my age the recovery could take more than a year .... perhaps two or more !! Not really what I want to hear just now; life is moving at a frustratingly slow pace. Without the haemoglobin it’s very difficult to exercise properly; the one mile walk up the hill to the ‘summer seat’ had me gasping yesterday and my head was booming. I expect that if the level is still low next week they will be organizing another blood transfusion. Ah well, just another day in the life.... no big deal.

The nice thing is that Christine’s had a good Easter in the Pottery. Very positive feedback from customers to the new work which is most encouraging for her. She’s still in a bit ‘stressed out’ about loosing the best part of three months work because of my illness but that can’t be helped.