Peter’s Hospital Diary

Indeed it was – but you might be asking why I was up at Guy’s this morning when the next scheduled visit was to be next week! Bear with me and I will tell you!

It has been a busy week one way and another. Last Saturday I was doing a bit of preparatory plumbing prior to converting a bathroom shower into a power shower. Not a difficult job (replacing a 15mm pipe with a 22mm plastic pipe) but by the time the airing cupboard is emptied etc etc, it took most of the day!

On Sunday I was away at a diving conference which was a good opportunity to meet up with some old dive buddies and catch up on the latest news, doctrine and see some presentations on some of the expeds that have taken place in the last 12 months. The place we were staying at was very nice – except for the mattress which must have been one of the most uncomfortable I have ever slept on! I came back from that on Tuesday, which brings me to my visit to Guy’s.

I have been feeling a bit ‘off colour’ for about a week now, nothing definite, but strange aches and pains, partcularly when lying down, and serious enough to stop me getting comfortable when sleeping. There have also been strange numbness round my lips and nose which comes and goes, and to just add to the picture, I thought I had developed a hernia after my last hospital stay.

So after another sleepless night on Tuesday, I rang up Guy’s, had a chat with Viki (specialist nurse) and Rob (specialist registrar who I have mentioned before) and asked them what they thought – and not surprisingly they suggested I came and visited them as they felt that tele-medicine is not sufficiently advanced for a telephone diagnosis! They were also concerned that I might be getting shingles which would need treatment.

Of course it would be on the morning after a very stormy night! The trains from my local station weren’t running (flooding) and the local traffic was awful. Eventually I ended up at Winchester after an hour of driving – it normally takes 20 minutes!

However, I arrived reasonably early and after the customary blood letting, I saw Rob. The good news is that he couldn’t detect any swellings – a good result as it shows that the lymphoma is still radio-sensitive. However he couldn’t explain the strange aches or the sore tongue or numbness, except that it could be a hint of GvHd. At least it isn’t shingles!

We did have a bit of a discussion, and while it is likely to be another 3 weeks or so before GvHd is likely to be seen, there is still a risk that the lymphoma could be advancing faster than the GvHd, and the biopsy did show that it has become more aggressive.

So I will be going for another PET scan sometime next week (number 18!) so that we can see exactly what is going on.

We had a long chat, and I discovered that my case had been discussed at a meeting of The European Bone Marrow Transplant Group and the general consensus is that promoting GVHd – with the wanted Graft v Lymphoma effect still offers the best chance for long term remission. Mantle cell lymphoma is very rare, but a recent study from Nottingham showed a 75% success rate in achieving a long term, durable remission in patients with relapsed mantle cell lymphoma following a mini-MUD. Unfortunately the sample was only 4 patients! So the plan remains to continue with another dose of donor lymphocytes. Although these are normally given at 3 month intervals, the PET scan should give better information and indicate whether it might be better to adjust the timings, and bring the next one forward.

So next week I will be off for another scan, and the week after I should get the results! And the hernia? Yes, I have got a small para-umbilical hernia, probably along a line of relative weakness where my splenectomy scar lies. It will probably need surgery to repair, but the team would be reluctant to send me for surgery until the lymphoma is under control – surgery now would just add another complication to the lymphoma treatment plan.

It was good to see Liz (one of the specialist transplant nurses) who confirmed that they all have fingers crossed for me too!

I got home relatively early, but feeling a lot happier – knowing that the plan is on track!

This has been a long post, but but I can’t finish without saying that it was also good to see Sarah (Like2like) fresh from her transplant (only 31/2 weeks on the ward) and looking very well!

So very much Onwards and Upwards!