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.

This week it was the turn of Dumfries Infirmary for my Monday visit; blood test and check-up. The only slight problem with the appointment was that it was at 2 pm; the very time that my body usually has a shut down that only an hour or two asleep in bed seems to sort out. However, a couple of wee power naps got me through the rest of the afternoon which was rather long and drawn out.

Tuesday morning was my time for the swine flu injection (part one) - that should give my newly emerging immune system something to think about ! Christine had quite a sore arm for a couple of days when she had the vaccine in the autumn but it didn’t cause me any problems, however I was feeling like quite a hypochondriac the remainder of the day and took things very gently. Putting my feet up suited my furry friend perfectly.

March has begun like a lamb this year instead of the usual lion; quite settled weather with very little wind. Wednesday’s sunset was glorious and well worth the walk up the edge of Moyle Hill. The trees just glowed.

The following day I risked a gentle mountain bike expedition to the Muckle above the village to meet up with Allie and Christine who were doing a much bigger loop on their bikes. The tide was well out, beyond Rough Island, and the play of light in the estuary was impressive.

Spring at last !

That 6 mile cycle ride on Tuesday left me completely wrecked for the next two days. Twice up that hill in the middle was maybe a bit much. Fortunately spring has arrived this week.



















A gentle time wandering around the garden watching the crocus open to join the snowdrops has helped me recuperate. I can see that a little more patience may be required for my recovery.

Once a fortnight now (T.132)

Yesterday’s visit to the Beatson Cancer centre in Glasgow was the last of the weekly visits. From now onwards instead of Glasgow on a Monday and Dumfries on a Thursday the visits are switching to alternate Mondays for the two units. That feels like real progress and a lot less of a bind. The French stem cells appear to have bedded in nicely and the anti-rejection medication (Ciclosporin) is being reduced by 5 mg each week and so far there has been no major signs of Graft vs Host Disease (GvHD). The only major problem is that the donor’s blood group was type A and mine was type B. Apparently it will take a year or more for my body to become fully adapted to being a type A. Meanwhile my haemoglobin levels are likely to remain below normal until it all settles down. So I’ll just have to carry on puffing up the hills. The bicycle muscles seem to have withered away and are going to take a while to build up. Christine is having to wait at the top of the hills while I catch up.
ps. maybe 6+ miles up that hill twice was over doing it..... I was a complete wreck the next day !!