Peter’s Hospital Diary

I’m back in London after a weekend at home. I had my Friday treatment then got on the train to get home by about 5:30. Just as well as we were round to some friends for dinner. Lucky it was on Friday as I still had some vestiges of taste left (although my mouth was quite sore). By the time Sunday dinner was served, I couldn’t taste anything. However I have found some analgaesic mouth wash (that I had during the second transplant) which has helped the sore throat and mouth. Still, the loss of taste didn’t stop me doing a bit of plumbing in the bathroom – new taps to replace some leaking ones (that were beyond repair – even by grinding the seats and replacing the washers, already done that!) I had a welcome visit from Mark (fellow blogmaster) and we had a ‘boy’s afternoon’ at B&Q and PC World!

There were lots of fireworks about on Saturday night – we didn’t need to go to firework party – just standing in the garden was enough! Funny to think that this time last year I was in hospital having chemo before the transplant.

I travelled back to London this afternoon, and arrived at the radiotherapy unit 15 minutes early. To my surprise I went straight in and I am now back at the flat. I suppose I had better think about cooking something, although the thought doesn’t appeal!

Still, onwards and upwards!

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Yes, six sessions of radiotherapy completed! The swelling is definitely subsiding, and I think my speech is getting clearer, although the very dry mouth I have also makes my speech sound a bit strange. I was warned that one of the side effects would be a dry mouth – my salivary glands are getting full ‘benefit’ from the rays!

And it is nearly nine calendar months since I was receiving the stem cells from my anaonymous donor, which brings me neatly to my next topic.

You may recall that a couple of weeks ago (25th October to be precise) I mentioned another patient, Sarah, who was about to go for a transplant. Well Sarah posted a comment here last night, and also posted a link to her own website, like2like. (I have also included a link on the right). You may remember that when an unrelated donor transplant was suggested for me, there initially 80 potential matches, which were whittled down to six, one of whom was selected. Well Sarah wasn’t as fortunate, and if you look at Sarah’s story you will see that she is of mixed race, and her website highlights the problem that Afro-Carribean and mixed race populations have in that they are severely under-represented on the various bone marrow registers. I urge you to look at her site – it is very moving.

Fortunately a donor has been found for Sarah, and I’m sure you will all want to join me in wishing her well in the weeks to come, and the following months as she starts getting her life back.

Onwards and Upwards, Sarah, we’re with you all the way! (And I see lots of support for you on your website too!)

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And not much else to add to that – today was the 5th dose of radiation – 7 to go. However in the time honoured tradition of filling in space with a photograph, I have included the views from the flat where I am staying – which you will recognise as Tower Bridge by day and night!
There was one other event of the day – I called in to see my friends at “City Hospital” and met up with Nicky. I have mentioned Nicky (and Rachel) before, but to recap, Nicky was the researcher for the first ever series and I was one of the first patients she researched in 2002 when I had the first transplant. She is now a producer! Rachel was also a producer but hasn’t been involved with the current series. It was good to catch up again (and a good cup of tea – thank you Nicky – just what I needed after the radiotherapy!)

So onwards and upwards!

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A relatively early dose of rays today – at 2pm. Not a lot to report really, much the same as the other days, although I did try timing the doses (it helps pass the time!). I get a burst of 14 seconds, followed by a bit of whirring as the shutters in the machine change shape, and I get a second burst of six seconds. The machine then rotates round and the other side of my neck is given the same treatment. Finally, the bed is rotated and I get a full frontal burst of another six seconds – and that is it!

It is quite strange though as I’m sure I get a metallic taste in my mouth while I am being bombarded! The longer term side effects are also starting to kick in. My mouth feels quite dry, and my throat is sore. The underside of my tongue is feeling sore too, and my sense of taste is definitely affected. I am beginning to feel a lack of energy too, although whether that is the result of the radiation, I’m not sure!

Enough of the negatives, on the plus side I think the swelling is starting to go down. My speech still sounds a bit slurred, but my throat doesn’t feel as obstructed, which is good news.

I met up with a couple of people today, one was Simon (different one from the birthday party) who was part of the broadband team when I was campaigning, and I also saw Florence, who happened to be at St Thomas’s today. Florence is part of the specialist team (that includes Viki) and has been very supportive – and also has all digits crossed!

So – onwards and upwards – 8 doses to go!

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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!

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And that just about says it all really! I had the second dose of rays this evening – slightly delayed because the machine I was booked into had broken, so I had to wait for a slot on another one. However it all went smoothly, and was a little qicker than last night as there wasn’t the need to take alignment X-rays (that was done last night) or fit calibration monitors. It was also more comfortable as one of the shims under my head was removed, easing the pressure of the mask.

I’m not sure if there any side effects yet – the bottom of my tongue feels odd, but my sense of taste is OK – so far. My throat is a little sore, but that has been the case for a week or so.

Anyway, a break for a couple of days – the next treatment is on Monday afternoon.

I am staying up in London tomorrow – I’m off to a Birthday Party tomorrow evening (an old school friend that I haven’t seen since… we left school, then I’m going home on Sunday, and back on Monday.

So Onwards and Upwards!

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Yes, it really is 40 weeks since the transplant – doesn’t time fly! However to return to the present I have just returned from the first dose of radiation – and not a lot to say about it really.

The treatment itself is painless – there is no sensation that a high dose of gamma radiation is zooming through the tissues, the only uncomfortable bit is the mask, which grips the face and head to hold them in a pre-defined place. The worst bit is that it digs into my eyebrows. It is also uncomfortable because my obstructed throat makes it difficult to swallow, and lying on ones back compounds the problem – still it was only for 20 minutes.

I must mention the radiographers, Alison and Caroline – who looked after me today, and there are two otherts, Ben (who I met yesterday) and Sarah, who also works on this unit.

Meanwhile back at the ranch, the missing cushions have finally turned up (actually with two additional ones) so we are now just waiting for the coffee table!

So onwards and upwards – die, lymphoma cells, die!

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As the title says, I am now in London, staying in our friend’s flat (thank you Marion!) just down from Tower Bridge. So far this morning I have been to the Day unit at Guys, with the radiotherapy at St Thomas’s starting later this afternoon. But to recap over the last few days…

It has been an interesting couple of days health wise. During the course of last week, the swelling gradually increased, and at the last visit (last Thursday) to the Haematology Clinic my Thalidomide dose was doubled to try and tweak my immune system response. By Saturday the swelling was still increasing, but there were definite signs of the GvHd appearing – dry and blotchy skin on my face. Monday night was most peculiar, the swelling was still increasing, and I woke up in the night to find the whole of my lower jaw was numb – just as if I had hbeen given a dental anaesthetic. That passed off, and the following morning my speech seemed a little clearer.

It seemed clearer again this morning, and when I finally got to the Day Unit, Linny’s comment was that “It’s about the same as last week” – which I interpret (being the eternal optimist!) that it is no worse than last week – and to me it feels slightly better!

The journey up was tedious. There had been an earlier derailment outside Waterloo, which led to some train cancellations, so my normal 90 minute journey took nearly an hour longer. Still, it was good to see Orla, Emma and Claire – the wonderful Day Unit team – this morning.

I must also mention Sarah, a patient I met this morning who is going for Matched Related Donor (MUD) transplant on November 7th. Good luck Sarah – and I’m sure all who read this will share that sentiment! (By the way Sarah, if you leave a comment, the first one doesn’t appear immediately, but subsequent ones will.)

Richard – thank you for your good wishes too!

So Onwards and Upwards (and I’ll post a bit more later after the first dose of rays!)

And I have just been for the first set of rays – to discover that they are scheduled to start tomorrow! Grrrr!

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And a wet, wet. wet day it is too! However this is just a quick update as I think that there is a hint of the GvHd appearing! The skin on my face is getting very dry and blotchy – just as it did last March/April, so we will see what happens! (This is about the right timescale too as it is just over 5 weeks since I had the first DLI.) The thought of the GvHd again isn’t particularly pleasant, but hey ho – no pain, no gain!

So we will see what happens! I guess the radiotherapy will still go ahead, partly because the swelling is slowly coming back, and also because if we can give the lymphoma in my neck a good kicking, the immune response can get to work mopping up the stragglers elsewhere!

Onwards and upwards!

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And before anyone asks, yes it was an excellent evening, spent remembering “The Immortal Memory”! And I feel very well this morning! I did leave at midnight before I turned into a pumpkin!

However just before I was due to leave for the ‘do’, I had a ‘phone call from Olivia (the Radiologist SPR) to say that they had reviewed my treatment plan and had decided to modify it. This is because I have already had a lot of radiation (as the precursor to the second autologous transplant) and as radiation damage is cumulative, they have decided to reduce the dose a bit.

So I am now having 12 treatments (instead of 20) but each one will be 2 Grays instead of 1.8 Grays, so the total dose will be reduced by a third. This should be enough to swat (lovely image – swatting!) the lymphoma while we wait for the GvHd to kick in. Best news is that the treatment schedule will probably be brought forward, so I should start next Wednesday, which means it will be finished by 9 November, so my taste buds have some chance of recovering before Christmas! The reduced dose should mean that the side effects will be less anyway.

Onwards and upwards!

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