Peter’s Hospital Diary

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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Oh - you guessed! Yes, back up to Guy’s again for another check up with the lovely Linny! Not much to report really. There is still some swelling round by tonsils, but I knew that anyway as my voice is still a bit odd, but the radiotherapy in 2 weeks should sort that out. Linny did emphasise that the radiotherapy will probably knock me down a bit!

Meanwhile I am to double the dose of thalidomide to get the immune system twitching. My next appointment is next Thursday, unless anything dramatic happens with the swelling in the meantime. One thing Linny did say was that the amount of activity on the PET scan is a bit higher than it was after the transplant - so best the radiotherapy gets to work soon then!

After the chat with Linny, I went up for a lung function test. No real change from last time, so the next one will be in 3 months’ time.

Tonight I am off out to dinner to celebrate a little sea battle held 201 years ago! Should be a good evening!

Onwards and Upwards….

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And it was off to London again this morning, this time for the radiotherapy planning session! I’ll gloss over the difficulties of finding a car parking space near Winchester station at 10 o’clock in the morning - it only took an hour - but eventually I arrived up at St Thomas’s Department of Oncology and Clinical Radiotherapy for the planning session.

I was met by Olivia (Specialist Registrar in Oncology) who explained the procedure and got me to sign the all important consent form. Basically, the plan is to give me a few (!) rays on my neck from both sides to zap the lymphoma cells that are residing there. Side effects will include a sore mouth and throat (a bit like the effects of the chemo) and another assault on my taste buds (with the risk that the changes in my sense of taste could be permanent - although they still haven’t returned to normal after the last lot of GvHd!) There is also the risk of a dry mouth as my salivary glands will be affected, but they should return to normal.

Anyway, after the consenting, I went into the planning. The important thing is to ensure that the right bits are irradiated, so the first stage was to position me on a machine similar to the gamma ray generator, to measure my position and take a general X-Ray of my neck to ensure that I was positioned correctly. The gamma beam itself is very precisely steered, (to within a millimetre) so it is important that I don’t move when I am being irradiated. To ensure this, a face mask is made that clamps over my head and holds it in place under the machine. The mask is made from a thermoplastic mesh, so while I was lying on the ‘bed’ like the one on the gamma machine, this warm mesh was moulded over my face and allowed to harden. Not a very pleasant experience because my head is immobilised, and the mesh tends to shrink slightly as it cools, gripping my head quite tightly.

After the mask was made, I was put in it under a CT scanner so the precise location of the affected lymph nodes could be determined, so that the coordinates can be fed into the computer that controls the gamma ray generator. From a technical and engineering point of view, all very interesting. As a patient….hmmmm!

This all took about 2 and a half hours, so I got away by 4 o’clock to return home, clutching the appointment schedule.

Ah yes, the appointment schedule. I will be having 20 doses of radiation, each session lasting up to an hour. Not that I will be zapped for an hour, but it takes some time to set up the machine, and get me aligned in it. I suspect the actual radiation will be on for 5 minutes or so. However the times are all over the place, and take place on successive days. I haven’t decided if I will travel up daily, or stay in London for the week. I suspect I will feel quite tired (although I hope not too sick - it isn’t zapping my gut or stomach) so maybe staying in London 4 days at a time may be the solution. Anyway, it starts on the 31st October, and ends on 27th November. I don’t think it will be much fun, but then no-one said this would be easy!

Meanwhile I am continuing with the Thalidomide, so lets hope the GvHd starts soon!

The next trip up to Guy’s is on Thursday for the haematology clinic - and a lung function test!

So the show is back on the road - onwards and upwards! I just want to crack on with it now!

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At last, although I must say that the crew in Stanley ward are every bit as lovely as my friends on Samaritan ward. I must especially mention Nick (the night staff nurse) and Adam, who was on days yesterday and today. The only problem with naming names is that inevitably some are left out, so please pass on my thanks guys!

But to start at where yesterday left off… After the last 500mg dose of prednisolone, I finished off (most of) the saline and was allowed out to Marian’s flat again, where I could have a bit of peace and relax. I was back in time for tea, and then spent an evening watching Jane Eyre.

This morning I was up bright and early, washed and ready for the ward round in preparation for the great escape! Adam told me that an appointment had been made for me at the radiotherapy clinic at St Thomas’s tomorrow for a radiotherapy planning session. However I had to be consented first, but the Doctor for that (Octavia) wouldn’t be able to see me until after lunch. Oh well, I settled down for a quiet morning! (but we got the canula out) One good thing was that Kim (The Dimbleby Cancer Care sponsored Aromatherapist) came onto the ward, and I had a lovely foot massage! Thank you Kim!

Just after lunch I had a visit from a support psychologist (Shelley) and we had a chat until the ward round descended! This time it was, Matthew, (Senior Reg, who I saw when I was having the transplant) Melissa, Roweanna and Connie, and having looked at the swelling, declared me fit to leave - once they had checked back with Linny *within half an hour”! Nearly an hour later, after failing to find Linny, they said I could go!

I stopped by to see Viki on the way out, to confirm appointments for this week. There is still some debate about the radiotherapy. My view (for what it is worth) is that while the steroids have fixed the immediate problem, the swelling, it has also damped down any GvHd. Now the Thalidomide should stir things up again, but it seems to me that this might have given the lymphoma a bit of a lead, so we should give it a good kicking while we can!

Anyway, on the way home I had a call from Olivia (radiologist) confirming the planning appointment tomorrow!

So onwards and upwards! Now the only snag is what to file this under - I’m not in hospital, I can’t say that I am completely getting my life back, so I suppose “on hold” remains the best option - but only for the moment! (Dual category - “Post Hospital” and “Life on Hold”)

By the way, thank you for the comments - I will answer them under the relevant posts!

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