The 100 Day Assessment

Monday was the 100 day assessment. It has been a major landmark on the horizon for many weeks but turned out to be a deflated balloon by the time we arrived at it. There was no bad news, but how good is ‘good’ is anybody’s guess. When it comes to clear explanations and positive thinking, we ended up with my least favourite doctor. We came away from the meeting having no idea whether 100 % chimerism was any more likely to give a favourable outcome than 50%. Medical science is far from exact and the Reduced Intensity Transplant (RIC) is so new they will probably need 10 year’s worth of statistics before they feel comfortable recommending any particular pathway; and by then they may well have thought up a new way of proceeding.

However, things are moving in a positive direction. The bone marrow biopsy showed more than 98% donor; a tiny percentage of my own lymphocites were still around but it was impossible for the doctors to say whether any were carrying the defect which causes my CLL. Over the next month the Ciclosporin dose is to be gradually reduced. The hope is that this will give the donor immune system a chance to become more active and therefore seek out and destroy my stem cells and lymphocites - which will be seen as ‘foreign bodies’. However there is a possibility that the reverse will occur and my lymphocites will start doing battle with the donor’s. So the weekly monitoring must continue because the doctors have no idea what will happen; they will just react to situations as they arise.

The other positives to take from the assessment meeting are that I can start to lead a slightly more social life. I can expose my self to a few bugs and give my immune system something to work on. It’s got a lot of relearning to do. So small groups are ok but I’ve still to avoid large crowds. Also, my ability to concentrate is beginning to come back; so over the next couple of weeks Christine is to accompany me in the car while I drive short distances. If she feels confident about my capability then I will be able to drive myself. Progress indeed !

Finally, I was told to start pushing my self a bit harder physically ( I don’t think they’ve any idea what the hills are like round here ). Anyway it’s a good excuse to extend the milage on the mountain bike and exercise a new set of muscles, so I’m back to gasping up the hills again. The doctor suggested hoovering, but she did have a wicked grin on her face.

T.116

The repairs to the external shell of planet Rodg took another step forwards on Thursday with the removal of two stitches; they marked the spot where the Hickman line was removed last week. So I no longer have a couple of pipes dangling from my collar bone which makes sleeping more comfortable but spoils my robot image.










Other bits of the external shell are not faring so well. The normally skinny Rodg ankles and boney feet look more like traditional Pork sausages the size of tree trunks. The daily dose of Furosemide is supposed to help reduce fluid retention but is not making a great deal of impact. I am 1/2 a stone heavier than normal and all the weight is concentrated in two places; the other being my equator, which has gained 2 inches. If things carry on like this I really will end up looking like a planet.

On the positive side, the haemoglobin count is now up at 109. Not quite as high as I’d hoped after the blood transfusion but I do feel more energetic so perhaps this rotund waistline will start to shrink with increased exercise. The general medical opinion is that the Ciclosporin, anti-rejection, immuno-suppressant drug, can be responsible for fluid retention but that will not be stopping for a good while yet. When will all this medication end ? Half the pills fit in my blue, Mon.-Sun. box but there are so many that the other half have to be counted out twice a day. I hate swallowing pills !

T.108

So why is this 100 day hurdle so special ? Red blood cells have a life span of 100 - 120 days and are created from stem cells in the bone marrow. So round about now, the last of my own blood group should be vanishing and being replaced by the donor’s ( depending on how much of the old ‘me’ survived the chemo ). The balance between the two is going to be a fairly good guide as to what is going on deep in the marrow and how successful the transplant has been. I expect that all will be revealed over the next couple of weeks. The long term aim is for the donor cells to take over completely.



Hey ! This week’s extra couple of pints of blood has made an immediate difference. I can walk up the hill without my heart feeling like it’s about to burst and my legs feeling like lead weights are attached. Could not resist trying out my bike muscles for the first time. Took a whizz down to the far beach at sunset to see the tide coming in. Today really felt like the first day of Spring. There was a real warmth to the sun and not a breath of wind. The air was full of bird song. Inigo and Extrapuss thought it was heavenly.

T.100

Tomorrow is T.100. Next week is to be a busy one. Glasgow are going to do a bone marrow biopsy on Monday and make their 100 day assessment. On Tuesday the Dumfries Team are to give me a blood transfusion; and on Thursday they are going to remove the Hickman line.

It will take a couple of weeks to get the results back from the bone marrow biopsy. They drill into the hip bone, just to one side of the spine, and remove an inch or so core sample from the marrow. The desired result is to see 100% donor stem cells. It will be interesting to see what the actual chimerism turns out to be.

My last blood transfusion was round about 25th of November. The haemoglobin levels have been dropping ever since, creating the odd situation, since Christmas, of feeling more and more tired with each week that passes. Looking at the graph, they seem to be levelling off at about 86 but that is a lot less oxygen carrying capability than the 138 I started off with in October.

So it will be interesting to see what sort of a boost it gives. Maybe I’ll get my first mountain bike ride of 2010 in a fortnight’s time ? (just on the forest roads, Christine, I promise !)

T.90

Today is the 90th day since the transplant. T.100 is suddenly just around the corner; any week now the ciclosporin dose will start to be reduced and then we will begin to get the first hints of whether Graft vs Host Disease (GvHD) is going to be a problem. Every individual is different and no one is prepared to place bets on the outcome. Christine spoke to a woman at yesterday’s Glasgow clinic who was four years post transplant and who was being treated for GvHD but she was very positive about the whole process. I need reminding that my Leukaemia was dominating life to a greater and greater extent; I will never get back to my former self. What lies ahead is a life slightly compromised but at least it’s life. It is up to me to get the best quality out of what it throws at me. The medical staff keep emphasising that the normal transplant process takes a year. It’s difficult to focus on that distance, all I can see is the next hurdle. I am impatient but the process cannot be rushed.


I get a little out of breath climbing a hill because the haemoglobin levels are low. There are mutterings of another blood transfusion to boost it but they are reluctant to complicate things further. The donors blood group is A+, while my own is B+; there is a battle going on inside me for dominance causing the lower haemoglobin count. A blood transfusion would require blood from group O; hence the further complication which they are trying to avoid. The trick is to ignore the listlessness it brings about and just keep up a little bit of exercise for the sake of the muscles without overdoing it. I have to rest each afternoon; at the moment sleeping for a couple of hours between 2 - 5 pm. It cuts into the day and makes it difficult to maintain any kind of momentum.

And all the time, hanging over me, is the knowledge that I have no resistance to infection. Every day I swallow pills : antibiotic, anti-fungial, anti-viral. Every day I have to take my temperature knowing that any rise above normal that lasts more than an hour means instant admission back to hospital. My heart sinks at the very thought of it. I have to keep reminding my self: this isn’t for ever, it’s just another hurdle on the long road. Meanwhile my brain goes round and round in endless tracks.....

Clinic Day (T.78)

The day before we were due to make the trek to the Glasgow clinic a couple of inches of snow fell.

The landscape was transformed into a thing of great beauty....... while the already frozen roads became even more treacherous.





























The following morning the alarm went off at seven. The bedroom was pitch black and it felt like the middle of the night. Our transport was expected at eight so we had to be up and ready. Christine had made a picnic lunch the night before but there was still a hot flask to pack. We were ready with our bags and overcoats at eight but our ambulance/taxi never appeared. It was -12 0 C outside. There was no one on the other end of a hospital phone line to contact. Should we drive ourselves to Glasgow or sit tight and wait ? It was 9 days since my ciclosporin (anti-rejection) levels had been checked and it had been an odd result. To miss this clinic could have consequences. To get there in time to be seen and checked, with the local roads snow covered and icy, we had to leave before 8.30 am. We decided to go for it.

As we slowly approached Dumfries the surrounding snow covered hill tops were tinged pink, bathed in the first rays of sunrise. We were unable to drive safely above 30 mph until we reached the gritted motorway. Then came the next problem - the screen wash was frozen. We peered through an ever darkening windscreen until after 15 minutes we had to pull over and clear it by hand. This became the pattern for the rest of the journey but we got there. The clinic was quite crowded - everyone was late, having had similar travel problems.

I had hoped that a warm engine would defrost the screen wash for the return journey but the air temperatures were far too low. We left the Beatson clinic a good hour later than usual and headed back South under cloudless blue skies. The low winter sun shining straight into our eyes made the drive back even harder but the snow-clad border hills looked gorgeous. A few miles from home they took on that same pink in the setting sun that we had seen as we left. Dusk closed in around us as we unlocked the front door and emptied our bags, glad to be back safely. Another clinic day over.

Happy New Year (T.71)

I've been home 4 weeks now but at the slightest rise in temperature I'll be readmitted. I'm stuffed with every kind of pill morning and night. Anti-viral, Anti-fungial, Anti-biotic, Anti-rejection. It is just over 70 days now since the transplant and after day 100 they may start to reduce the anti-rejection dosage; that's when we've got to keep our fingers crossed that there are no major problems with Graft vs Host Disease. The donor match was a good one which should help reduce the chances of problems.

Meanwhile I've just got to avoid picking up any infections that could blow me away; hence Christmas has been a fairly quiet affair and the beginning of the New Year been the same. Externally I look in good health and it is difficult for visitors to appreciate what a delicate balancing act is going on internally. I still need a considerable amount of rest to allow for these internal repairs to continue uninterrupted. There is very little sign of the hair on my head growing yet but there is a weeks worth of stubble on my chin so something is kicking back into life. Compared with other transplant patients that I see or hear about, things for me are going very well so far.