Peter’s Hospital Diary

And it was off again to a full day at Guy’s and St Thomas’s this morning!

The day started very well when I bumped into Robert Carr as I was on my way into the Day Unit. You may remember that I was placed under Robert’s care when I was first diagnosed, and I have remained with him outside the main treatment regimes, although he is a Leukaemia specialist, rather than Lymphoma. However I haven’t seen him for ages, although he has been following my progress and has been at the MDM (Multi-Disciplinary Meetings) when my case has been discussed, so he has had a say in my treatment. Anyway, it was good to talk to him, albeit in a corridor, and I always feel much better having seen him!

So it was into the day unit, where it was good to catch up with Orla, Emma, Karen, Liz, and of course Viki. Unfortunately the one person we were missing was the stem cell scientist, Justine, who had been delayed on the trains, so while we were waiting, I nipped down to re-aquaint myself with pharmacy for some steroids.

Now these steroids are “just-in-case” drugs (‘only’ prednisolone) should the GvHd kick in sooner than expected, or the lumps start getting bigger, but I wasn’t told that, so I took the first two when I got back to the day unit! Oh well, it seems no harm was done!

Then I had some IV Piriton, just to help prevent an acute reaction, and the cells were infused – not much, about 20ml. I had to sit around for an hour, again to make sure that there were no untoward side effects, (apart from the drowsiness caused by the Piriton) and it was off to ENT for the check up, although before that I did have another chat with Linny about things. (In the room I call “The Bad News room – it is a side room very tastefully furnished, with pastel painted walls and subdued lighting, and I alwys think that is the room used to break bad news. I don’t suppose it is really, it is just a quiet and private room, and unlike an office. I have shared the joke with the staff in the past!)

The good news from ENT is that wound is healing nicely, and there doesn’t seem to be any complication. The bad news is that the swelling in my mouth, which is still causing me to sound a bit slurred, is caused by more enlarged lymph nodes, mainly my right tonsil and the right side of my tongue. Not so good, and I am seeing them again in two weeks. I will also be seeing Linny before that for the results, and possible further courses of action.

I went and sat in the day unit for an hour before going to St Thomas’s for the PET scan. I have said enough about PET scans in the past, and this followed the normal pattern (except that I already had a canula in from this morning’s infusion which was then used for the tracer). The scan itself was a bit touch and go at one point as the unit had had problems making the tracer, but they managed to fit me in, albeit a bit later than expected. Still it was lovely to see Sally (consulatant) and Margaret (Unit administrator) again, although perhaps not under these circumstances…

I finally left at just after 6 this evening to get the train home. Busy or what?

I am away tomorrow doing some stuff with LeukaemiaCare, but I’ll be back Sunday before going off on a small break. I’ll try and post something before I go.

Meanwhile… O&U – I think!

Tags: PET Scans