Peter’s Hospital Diary

It turned out to be quite a busy weekend! Saturday was the birthday party, thrown by an old school friend, Simon, whom I hadn’t seen since the day we finished ‘A’ levels and he went off to join the Merchant Navy! We didn’t get a lot of time to chat (lots of his family and other friends there) but we did agree that it shouldn’t be quite so long before we meet up again. The venue was fantastic – the Naval Club in Hill street, London. Thank you Simon, a great evening! (And good that the clocks went back too – that extra hour was needed!)

Originally I was planning on staying in London for the weekend, but on Friday I received an appointment at the Royal South Hants Hospital in Southampton for Monday morning. You may remember that I was given some information by a friend of mine (Lisa) and the upshot was that I decided to seek a second opinion. Now I must emphasise here that I have NO reservations about the quality of treatment that the guys at Guy’s have given me for the last seven years, and in fact when I told them, they agreed that it was a good idea.

So this morning I went along to the hospital to meet with Professor Johnson, who (I am told) is “Mr Mantle Cell Lymphoma – UK”. He had received some comprehensive notes from Guy’s, and knows some of my consultants, but the outcome of the consultation is that he is broadly in agreement with the current treatment plan, which is reassuring in its own right. He did suggest one or two other drugs that might be appropriate – including one called Velcade (bortezomib), which has had proven clinical results in treating Multiple Myeloma, and has had some encouraging results with Lymphoma.

It just so happens that Velcade was mentioned in today’s Daily Telegraph as the nice people at NICE have just decided that Velcade is not ‘cost effective’ at £9,000 a course. However, NICE ignore the fact that the number of patients that could benefit from Velcade is small, so (say) 100 patients receiving Velcade would cost the same as 1000 patients receiving a drug costing £900 a course, or 100,000 patients receiving a drug costing £9 a course. Its a shame that all the money the government is putting into the health service (and will be putting in to pay for the Private Finance Initiative payback for the next 30 years) doesn’t go into the drug budget!! (*gets off soap box and puts it back into the corner*)

Anyway, Velcade is only available on a trial basis, and there are no Myeloma trials planned – but there are still trials for treating Lymphomas, so that avenue remains open. Incidentally, my good friends at LeukaemiaCare in their lobbying role (together with a coalition consisting of Leukaemia Research, Cancer Backup and Myeloma UK have just written a letter to the Health Minister about the NICE guidlines, so we will see what happens.

One other good thing about this morning’s visit was that I am now “on the books” at Southampton, so if I ever need anything in an emergency, they are much closer than Guy’s.

So after this morning I got back on the train to return to London for the next dose of radiation. That was scheduled for 5:30, but they were running late, so it was 6:30 by the time I left St Thomas’s to get back to the flat. A busy day!

The swelling in my mouth doesn’t seem to have subsided, although I was warned that initially it might get worse with an inflammatory response, so we’ll see how it progresses. My throat is beginning to feel sore though, and my sense of taste (what was left of it) is going. Ho hum. It is amazing, the machine is only one for maybe 30 or 40 seconds at a time (3 times – left side, right side and frontal). Very energetic gamma rays.

So – fresh from this morning – Onwards and upwards!