Friday… t+99

Well, how to follow yesterdays news!

I must say I was pretty elated after getting the news from Sala! I went on to see the consultant (Linny) who did say that it is difficult to quantify exactly how much it has shrunk, but for me the important thing is that there has been a dramatic change – and in the right direction! So even though the GvHd is unpleasant, so what?!

There was some discussion about starting the thalidomide, and that will be discussed at the next multi-disciplinary meeting. Appoarantly the last meeting that discussed the PET scan result was “impressed” with the result! I have another PET scan (number 15) being scheduled for 4 weeks time.

After the check up (and the continuing transfer of the Guy’s pharmacy stocks to my bedroom – mainly anti-biotics and steroid creams) I went for the repeat lung function test. Again a good result – the critical one (gas transfer efficiency) showed an improvement on last time, but just to be sure I have another one booked in May.

The next event of the day was the radiography planning session at St Thomas’s. This involved a CT scan and the tattooing of some calibration marks on my torso (I had something like an archery target in mind, but in practice they are 4 small dots)

I suppose the other question is whether I will go ahead with the radiography. I am scheduled for the simulator next week. This will be a dry run without the radiation to check the alignment and targetting. The course itself is due to start on 8 May, which is before the next check up, so I expect there to be some phone calls between now and then. I got the impression that the radiographer wants to go ahead, but perhaps it will be postponed until the results of the next PET scan.

During the afternoon, I saw Nicky, one of the producers of “City Hospital” and we discussewd how and when I will be on the programme. I’ll post details when I know more.

I can’t quite believe that it is 99 days since the transplant! I was thinking back over the last few months and looking at some of the earlier blog posts, and comparing this transplant with the previous two self donated ones.

The first one seemed the toughest at the time, with the unpleasant effects of the high dose chemotherapy, although that was the one that I think I recovered from the quickest. The second, with the radiotherapy, was fairly straightforward, although the recovery time after the transplant seemed to go on a long time, and I felt quite down during it – not helped by the loss of taste, which I think was slightly worse than that I am experiencing now. Of course distance blurs the memory, and there were all the other debulking sessions of chemotherapy, and the trials with the Rituximab, that took place in between transplants.

This transplant, although I was in hospital for longer, was similar to the last one in terms of how I felt while on the ward, and until the GvHd set in, recovery seemed to proceeding at the same pace. Of course, there is no GvHd in an autologous transplant, but if GvHd is the price to pay for the spectacular result so far – it is worth it! The critical bit will be keeping it under control so that it doesn’t become chronic, when it can become a more serious problem in its own right.

Wrinting this blog has been therapeutic too – and thank you all for your continuing support, comments, e mails etc.

So all in all, I feel pretty upbeat today! Sure, my skin is very dry still, and my sense of taste might be off (I have just not enjoyed a bacon sandwich!) but I am still here – the sun is shining, and the garden is green!

Onwards and very much upwards!

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Tuesday

It’s cold today! However the good news is that the GvHd has settled down a bit and I am feeling much better than I was on Sunday! Yesterday was a good day too.

I have an appointment for the radiography planning session (if it is needed – think positive) which will be this Thursday (it should have been last week, but I didn’t get the appointment letter in time) so this Thursday will be busy – check up in the morning followed by the trepeat lung function test, then over to St Thomas’s in the afternoon for the radiography planning.

So fingers crossed – onwards and upwards!

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