Friday… Late Effects Clinic and a trip down memory lane!

Yesterday saw me returning to Guy’s for my check up at Guys. It is 5 years sin ce the donor transplant, and the protocol dictates that I should have a bone marrow biopsy, and on Tuesday I received a phone call saying that one had been booked for me in the Haematology Day Centre.

So I duly travelled up a little earlier to go to the Day Centre – first surprise, it had moved, and a is now located round the corner in a much enlarged and very smart facility. However, while the location and facilities are new, there were some familiar faces, particularly Orla, who used to run the unit (and has moved on, but was back yesterday to help out), Karen, whio helped look after me during my various visits to Samaritan ward, Debbie and Grace, also from Samaritan ward, and finally, as I was leaving the unit, Yvonne, who used to run the day centre at St Thomas’s, where I first started treatment many years ago! It was wonderful to see you all and to catch up with all your news.

But is was strange being back in that environment. The site of the little canulas (or should that be canulae?), the red boxes marked “Danger – Cytotoxic drugs”, and the sound of the infusion pumps brought back many memories and mixed emotions. Having been so much a part of my life, I did feel like a visitor. The new unit seemed slightly less cosy than the old, but there is no doubt that it is an improvement. I was talking about these feelings with Orla, it is almost like being part of a family, and while the circumstances were not ones to be wished for, there were some good times during the various visits.

Orla did the biopsy (a new development – previously they have been done by a doctor. Lovely job too, almost painless and today no twinges at all. She did remark that my pelvis (to be accurate, the iliac crest) was particularly tough! I also had my armful of blood removed for analysis!

I was delighted to have a long chat with Michael, about two years into his treatment – so if you are reading this, good luck with the remainder of your treatment!

After leaving the unit, I went down to the Haematology 2 clinic where I had a check up. Nothing untoward found, but the protocol dictates that I have to have a bone density scan – ironic after Orla’s comments! I am also having another lung function test which will be useful with the diving!

I finished the day with a chat with Dr Raj, before heading for the train home. It was a bit of a dash and in my hurry I dashed for the wrong train, so by the time I had backtracked, I was an hour or so later than I expected getting home.

But it was a good day, lots of memories, catching up with old friends.

Tomorrow I am going diving (sheltered water, but it will be outside, so it will be a ‘chilly dip’ – perhaps I ought to take some nachos! 🙂

Onwards and Upwards!

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Tuesday… haematology clinic

It seems ages since I was last at the clinic – probably because it is! All went well, with nothing abnormal found apart from a single liver enzyme taken from my ECP blood test that is 20 times normal value! No explanation especially as everything else was fine. So it is either a false reading forom the lab or someting unexplained. I had blood taken today, so if the same result is observed I may have an ultrasound scan to see if I have a gall stone.

We discussed immunoglobulin again, without any conclusion, and we also talked about a lung function test, which will be useful if I am going to start diving again next year.

So all in all, progress continues and as I left I wished the staff a Happy Christmas as my next appointment isn’t until January!

So O&U!

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Monday… let it snow…

And it is – as I write! I was up early this morning to find a reasonable dusting of snow on the car, ready to drive up to the West Country. Given the snow, I decided that driving across Salisbury Plain was not a good idea! In fact the A34 was pretty clear up to the M4, so apart from keeping my speed down, the journey wasn’t too bad and didn’t take much longer than normal. However since arriving, the snow has caught up with me, and there are intermittent flurries and about an inch on the ground outside.

With all the concentration on the job, the third anniversary of my transplant on January 9th went un-remarked – which I think is probably a good indication of the progress made in ‘getting my life back’!

So, Onwards and Upwards!


Transplant Thursday

Today started badly! Although the pneumatic drills and trucks were silent, and I had a good nights sleep (aided by a half bottle of wine that last night’s visitor, Melinda brought in!) I was unpleasantly surprised to discover that 0845 and all external access from my phone has been blocked. At the moment I am writing this offline in expectation that something can be resolved, otherwise it will be back to posting via the mobile.

But back to the daily stuff. My day of freedom from drips yesterday wasn’t totally true. The saline stopped at abut 4, but before that, I had started on another drug, cyclosporin. This is an immunosuppressant, and I will be on some form of the drug, either IV or tablet, for the next 2 or 3 months to control graft vs host disease.

That finished in the late afternoon, just after Katie arrived or her visit. She had a day off today and did some sightseeing – including the Sherlock Holmes museum in Baker Street. She goes home today – I’ll miss her visits.

Just after Katie left, Melinda arrived bearing the already mentioned bottle of wine! Very nice too. Melinda is an old friend from post University days, and we had a natter for an hour or so catching up.

I also had a visit from my haemotology nursing specialist, Viki. Viki has been incredibly supportive through the last few months in the build up to today. We had a chat about the final details of the transplant, which will take place this afternoon. Technically it is very simple. The cells that were harvested from the anonymous donor yesterday afternoon are just transfused into me via the Hickman line. I will probably have an intravenous anti-histamine (Piriton) first which makes me sleepy, but the process takes less than an hour. Psychologically though this is a bit different from the self donated cells. The fact that these are different, and contain different DNA, which will become part of me, is a very strange concept. I cannot find adequate words to express my gratitude to the donor , but still, the concept IS strange! I know that it is possible to change blood groups after a transplant, although “my” donor has the same blood group as me. Oh yes, a cameraman from “City Hospital” will be on hand to film it for the next series!

Meanwhile the minutiae of the morning has continued. Bloods have been taken, and breakfast will arrive in a moment, then I can see about getting the phone line restored – which at the time of posting – isn’t.