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.