Peter’s Hospital Diary

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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Good news! As I walked into the clinic this morning, I saw Sala, the senior reg. He had a big smile and told me that the PET scan result shows an 85% reduction in activity. The value of 85% is a bit empirical but the imporant thing is the trend!

I’m off to the radiography planning sesslon now, but I’ll post more either tonight when I get home or tomorrow.

Onwards and upwards!!

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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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And it’s a drizzly overcast day here! I’m also reminded by Richard that it is Shakespeare’s birthday too.

Feeling a bit rough today - since stopping the steroids on Thursday, the GvHd seems to be kicking back in - probably a good thing, but a bit uncomfortable. I have a mental image of sword fights between the various cells battling it out - with the GvHd as evidence that the incoming immune system is fighting valiantly!

On a more mundane level, my skin is itchy again (out with the steroid creams) and I feel lethargic - still, no pain no gain!

Onwards and upwards!

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It’s a lovely warm sunny day today - it did start overcast, but the sun has broken through at last!

I had a good day yesterday - I ventured out for a pub lunch with Mark and enjoyed a pint which almost tasted like a pint should! However I felt a little off colour this morning, some of the minor sysmptoms of the GvHd that I had before, itchiness, runny nose etc, so whether that is a resulkt of my body adjusting to the stopping of the steroids I’m not sure. Maybe it’s hay fever that I have acquired from the donor!

However I am feeling better as the day goes on, so time to stop sitting in front of the server and go and enjoy the sun! And I’ve just heard the first cuckoo of spring!

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Not really much to report - apart from a dreary rainy day! (Although it does look as if it is brightening up a bit now)

I took the last of the oral steroids this morning - they seem to have done the trick in damping down the GvHd (just hope not too much!) and I feel a lot better. I even managed to get the contact lenses in this morning! My sense of taste seems to be getting back together too, although Pimms, wine and anything with dry ginger in it still tastes odd!

My hands are still sore, although the DiproBase moisturiser is really effective, and I hope that they will improve over the next week, before the next check up next Thursday!

Meanwhile I have been busy - I went an inspected a prospective car for middle daughter this morning, which she should collect next week, and then painted the internal wall in the conservatory - so I’m feeling very virtuous!

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Well if the PET scan facility was an airline, I think I’d be a gold card holder - the general consensus seems to be that I am close to the record holder for PET scans at St Thomas’s!

As PET scans go, it was pretty routine, the details are in the side links and other posts. However the time under the scanner seemed to go pretty quickly - possibly because I fell asleep! The hard part will be the waiting for the results, as this gives the second point on the graph… how well is the incomimg immune system valiantly fighting the lymphoma? (as well as me with the GvHd!)

And the GvHd does seem to be calming down a little under the influence of the steroids. My skin is less red and itchy, although my palms are peeling now - unpleasant as the skin on ones palms tends to be a bit thicker, and they feel very vulnerable as the skin flakes off. Still, plastering on some heavy duty moisturiser and the betnovate seems to be helping! I just need my sense of taste to return to normal - everything tastes either very bland, bitter or dry!

It was a lovely sunny day here yesterday - the conservatory is drying out, a choice has been made for the tiles, and we might have a decision on furniture. It was sunny this morning when I left - temperature rising, but decidedly cool and cloudy when I returned home. Still, the bit of warmth has brought the garden on nicely and it is looking very green!

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Happy Easter!

The steroids seem to be doing their stuff - my face has been a lot less puffy, and the Piriton continues to help relieve the itching and ensure a good night’s sleep! However I have now lost the remnants of last year’s sun tan!

My sense of taste is still out of sorts - which not only affects the taste of chocolate, but also Pimms and white wine, so the sooner that comes back into line the better!

The promised hot weather hasn’t yet materialised, although as I write this the sun is trying to break through - in advance of some dark looking clouds on the horizon. Maybe tomorrow will see an improvement - on all fronts!

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Another check up yesterday - and I needed it! The palms of my hands were a livid purple yesterday morning, prompting the response from Linny (consultant) “Yes, that’s definitely GvHd!” She then went on to prescribe another small pharmacy including large tubes of the topical steroids, some oral steroids, and some Piriton (an anti-histamine, familiar to anyone who suffers from hay fever!) for me to take home.

I then went to have a lung function test. This is to check that I haven’t sustained any lung damage as a result of the treatment, but one of the tests showed a 20% decrease in lung function, probably a temporary effect because of the GvHd, but we will repeat the test in a couple of weeks just to make sure. Meanwhile I have my next PET scan (the 14th!) booked for next Tuesday, the 18th.

It was a bit to late to take the oral steroids when I got home as they should be taken first thing in the morning, but it certainly wasn’t too late to plaster on the creams! I went to bed early, and took one of the anti-histaminers. Well, it does say that they may cause drowsiness, but I had what must be the best night’s sleep since I came out of hospital! No itching and out like a light! Wonderful!

Enough of the medical stuff - “What about the conservatory?” I hear you say! It is now finished. Simon (the builder) has just completed the last bit of cleaning and sealing, and I have just finished wiring in the sockets. (No anti-histamines before doing that!) The floor still needs to be tiled, but we want the concrete slab to thoroughly dry out before doing that - about 6 weeks. (Which might just be long enough to decide on which tiles to have!)

So - in all its glory…

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A fine and sunny start to the day (albeit with a cool breeze). I’m not feeling quite as good as yesterday, partly because as the day got colder and wetter, my nose got runnier and my face sorer! I still itch all over, althgough some of the redness of my skin seems to be lessening.

Not so much visible progress on the conservatory, more sealing and fitting the flashing over the join to the house. However at the end of the day the side walls were glazed - pity about the roof, but the glass for that should be here tomorrow. No photos today - too wet and cold to go out into the garden! (Just looked out - it is really wet and windy - time to put the heating on!)

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