Peter’s Hospital Diary

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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Well, I was spared the pneumatic drills this morning – to be replaced by the banshee wails of the petrol driven stone-cutters at 7:30! Oh well, too much bed can’t be good for you!

So I was awake bright and early, and only dozing for the morning observations. This was followed by breakfast a double portion of Alpen – must be those steroids!

But to catch up from yesterday…

I noticed reduction in the swelling and an improvement in my speech when I woke up, and Felicity (who arrived yesterday morning, just before the ward round) also noticed it. Good news! The ward round was conducted by my old friend Dr Robert Carr. As I have said before, Robert was the physician I first saw when I was referred here 7 years ago, and although a ‘Leukaemia man’ I have always regarded him as my overseeing consultant, although at the the moment I am under the immediate care of the transplant and lymphoma team of Dr Kazmi and Dr Yeung (Linny). But I digress (as usual!).

Robert’s comment was that the dose of Methyl Prednisolone (1 Gram) was the therapeutic equivalent of a sledge hammer, and that was followed up by a second dose of 500mg that morning. However he did say that when the current saline infusion was complete, there was no reason why we should stay on the ward, so at 12 o’clock we were free to leave for a while.

Now we had a difficult decision to make – to stay for lunch or go out for a Chinese? That took all of 5 milliseconds to decide so after the hospital lunch… No, we shot off, found a little Thai restaurant (the Chinese was closed) not far from the hospital, had lunch and then went and chilled for the afternoon at our friend’s flat (Marian – thank you) round the corner.

We got back just before 6 (just in time to miss the evening meal) for the drug round, and I started the Thalidomide that Felicity had brought up from home. Felicity left an hour later and I settled down for a quiet night. Unfortunately it was discovered that I should have been on more saline so I had another bag overnight, and this morning started on the last of yesterday’s!

This morning I have showered, and I am waiting for the third dose of steroids and back on the saline. The swelling has gone down again, so I am reasonably optimistic about being discharged tomorrow, unless there are developments in the treatment regime. At least when I get home I can correct the spelling mistakes!

So onwards and upwards – let’s get the acute problem sorted and then on with treating the underlying cause!

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It was with a sense of Deja-Vu that I woke up this morning – on Stanley word, a floor above Samariatan, but immediately above the isolation rooms, and with a misty view over St Paul’s, and the final touch – the sound of pneumatic drills coming from the car park!

But to backtrack…

After I rang Guy’s yesterday, and then getting the call back to come up and see them, I cleared my desk, and got up here for about 2:30 in the afternoon for admission to Stanley Ward. Stanley ward is a general oncology ward and I was last on it in the Summer of 2004 when I was having chemo prior to the second autologous (self donated) transplant. At that time it was decidedly tatty, but it has now moved to a completely refurbished floor and looks very smart!

After the customary form filling.. (Q. Can I walk unaided? A. Only up to the 6th pint. Q. Do I need help washing? A. Depends who is offering! Q. Do I need help undressing, dressing?, dressing etc? A.
Only after the 6th pint)

I then saw my consultant, Linny on her ward round. It has been a couple of weeks since I last saw her and she was somewhat shocked when she saw the enlarged tonsil! (I won’t repeat the exact words!) She then returned with Dr Kazmi, who having seen me last week was less surprised. However both agreed that the immediate task was to relieve the acute symptoms with a course of IV steriods, as it is clear that the disease is progressing faster than the GvHd is developing. The other suggestion was to start taking the Thalidomide (which I had left at home – it is on its way up now with Felicity who is coming to visit)

So I had the first infusion of Methyl Prednisolone last night – not the best time as it can make sleep elusive, but I did actually have a relatively good night apart from the observations! (ah – the observations – just when you are really drifting off!)

There are some more lovely staff here – I must mention Claire and Angela, the two staff nurses who have been looking after me, and Melissa, the Oncology SHO, who is from Washington DC and did her Medical training there at George Washington University.  We had a good chat about Wahington (many of you will know that up until 18 months ago, I was a frequent visitor to an office there.)  We also talked a little about my medical condition, and in between times, she put in the canula. (I won’t tell, Melissa, if you are reading this!)

This morning I feel well. Carol the phlebotomist has just taken blood from my other arm.  The swelling has gone down quite a lot and my voice feels stronger.  However while this has alleviated the symptoms, it has done nothing to treat the underlying disease, and from the treatment point of view it is a retrograde step because of the limiting effect on the GvHd and GvL, so I it is likely that I will have additional treatment to de-bulk the disease before having another go with the DLI.

I am writing this on the ward internet terminal.  However when I came to log on to post this morning, the site had attracted (and caught) some spam.  While this wasn’t visible, the firewall must have seen the titles, and promptly blocked further access, so I am having to use a webmail client to e-mail this to friend Mark, who will copy it to the site!  Thank you Mark!

So onwards, and I hope upwards, although at the moment it feels a little like “one step forwards, two steps back”!  Still, once the immedfiate problem has been sorted, we can get on with the treatment!

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Quick update! The swelling in my throat is getting worse and I ‘phoned Guy’s today. They are concerned and want to see me as soon as possible, probably for admission for a course of IV steroids and/or radiotherapy. I shall be travelling up later this morning, and I expect to be in for 3 or 4 days.

I don’t know if I will be online during that time, if not, I’ll post when I get back!

O&U – although perhaps a bit slower than I would wish!

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Not a lot to report on the health front, other than we are now 38 weeks since the transplant! I am not sure if there are hints of GvHd! My skin feels a little dry (one of the earlier symptoms before) and at times it looks as if I might have a bit of a localized rash. However there is no evidence of general reduction in the size of the swollen tonsil (and other nodes), although the actual size of the swelling does seem to vary day by day. One or two people have reported that my speech seems normal but I suspect that the reason for that is that I am learning to compensate and they are getting used to it! Certainly talking for any length of time does dry my throat and it tends to ‘catch’, which is uncomfortable. It also makes for restless nights, so I’m not sleeping terribly well. There are also some sore throat and cold bugs about, so I’m not sure if I might have picked up one of those, just to compund things. However I have resisted the Thalidomide so far, and next week I should get the second infusion of donor lymphocytes to promote the GvHd and the desired GvL effects. Then let battle commence!

Other than that, all is pretty quiet. I was in Cardiff yesterday for a trade exhibition, which was interesting (but not quite as exotic as Washington or Brussels – both places I used to visit in my last job!) This weekend I am going up to Birmingham for the Leukaemia Care volunteers conference, where I am doing a short presentation about the training scheme we are running. My next task is to write it (the presentation that is!).

So Onwards and Upwards!

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And indeed it was a well worn trail back up to the Day Unit at Guy’s! However, it is always good to see Orla and her team (Sharia, Emma, Clare, Jayne – and I’m sure I have missed someone out…) even if the circumstances are perhaps not ideal.

So after giving the customary two or three test tubes of blood, I settled down to do the crosswords, Suduko etc while waiting for the meetings and ward rounds to finish – which they eventually did and today I saw Dr Kazmi (The Head of Department) for our discussions.

The gist of this is that encouraging another outbreak of GvHd to stimulate the GvL effect remains the best chance of a cure, given that I had a good response last time, and of course this process has already started with the first dose of donor lymphocytes on September 22nd. He did remark that the GvHd last time was a little late starting, possibly because my donor is such a good match, and that (with the benefit of that wonderful thing, hindsight) it was a pity that it fizzled out just a bit too soon! Perhaps this time we wil get a stronger reaction that lasts longer to zap the last of the rogue cells.

Meanwhile there is the fact that the lymphoma will be advancing – the nodes in my neck do feel a little larger, and there is a risk that the enlarged nodes may obstruct my throat. While steroids would probably reduce the swelling, they would also damp down the GvHd (which we don’t want) so as a standby I have a box of Thalidomide ‘just in case’. This was not unexpected, and I have mentioned Thalidomide in the last two or three posts.

I posted a link about Thalidomide on the right, but basically it is an immune system modulator. Not something one takes lightly, but a useful stand-by. We did discuss other drug therapies, and the possibility of local radiotherapy, and he will discuss that with the radiologists (who will no doubt be itching to get the ray gun out!). Regardless of that, my next appointment is on the 19th, when we will look at the second Donor Lymphocyte Infusion (DLI).

Thalidomide still has its sinister reputation from when it was prescribed as a treatment for morning sickness, with the subsequent tragic consequences, and it is still prescribed on a named patient basis only. As part of the process I had to take part in a telephone survey to ensure that I understood the conditions of prescription – no donating of blood (not that any blood bank would go near my blood!) or sperm (after that dose of radiation 2 years ago – get out of here!!!) and … no – too much information…!

This all sounds very familiar, in fact I could use the ‘Prime Ministers Question Time” technique of “I refer the reader to my posts of March, April and May” – but I won’t – after all, what would I have to write about? 🙂

After leaving the day unit I called in at the stem cell laboratory to see Tammy and Justine, and met a new trainee, Bryony. We had a look at the calendar (which is how I know it was September 22nd when I had the first DLI) and in fact the 19th is 29 days further on from the first dose – pretty much optimal time for the second dose, so depending on the appearance (or not) of GvHd, I will probably have the second dose then.

On other fronts, the events of Friday went as well as these things do. The Service of Committal in the Crematorium in the morning was not as distressing as it might have been, and the memorial service, followed by the interrment of the ashes was a clebration of my Father-in-law’s life, although not without its emotional moments. It is at times like this that one is confronted with one’s own mortality, and John (John’s blog – 1 October) wrote a very good article about this a week or so ago. All I can say about the day is that if my F-i-L had been with us physically (as well as spritually) I think he would have approved and enjoyed the day – after all, he did plan it, even down to who was do the readings, who was carrying the flowers etc, so that all his family had a part to play.

So on that note, I will close, but with a definite and positive…

“Onwards and Upwards”

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I didn’t record the elapsed weeks last week, but it is just over 8 months since I had the transplant, although I suppose we are back where we were at t+63 (days) which was when I had my first post transplant PET scan. That was the day that Thalidomide was talked about while we were waiting for the GvHd to kick in – and here we are again. But the entry for March 23rd makes interesting reading and is reminiscent of the last couple of posts this month! And the GvHd did work very well, so I will be keeping digits crossed that it works even better this time around!

Meanwhile my friends at Leukaemia Care have also been doing some research to see what clinical trials with new drugs might be taking place! Always useful to know ‘just in case’.

And if you do look at back at that page, you will see that the conservatory slab and wall had just been completed and we were waiting for the superstructure to be installed.

I said in the last post that we were expecting the last of the furniture and cushions too arrive by next Wednesday… Well good news and bad news, some arrived yesterday, but the wrong seat cushions – and the next delivery (to replace the cushions and deliver the table) will be towards the end of October! It has been a bit of a saga, but it will have been worth the wait. However I can report that the underfloor heating is very effective and it is a lovely room. I will post a photo when it is (finally) complete!

Funny to think that six weeks ago I was considering whether or not to close the blog – guess it will keep on for the time being!

Finally, tomorrow will be a sad day – it is the funeral for my late Father-in-law, in the morning, followed by a memorial service in the afternoon. I will be driving up early in the morning and returning tomorrow evening – Felicity went up this morning, and will be coming back on Saturday.

Onwards and upwards…

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It has to be said that the last ten days have not been the best in my life, and just to pile it on, I took my diving medical yesterday (booked before the latest flare up) and failed, partly because I am not as fit as I should be, but mainly because the swollen lymph nodes in my neck are partly obstructing my airway. So it looks as if I won’t be diving in Cyprus. Worse, the doctor suggested that I might not pass a medical because of my medical history! However, I don’t give up that easily, and so while I have to accept that I can’t dive for the time being, I still have hopes of getting back into the water one day and sooner rather than later!

But onto Guy’s… and I must say I came away feeling a lot more positive than I have for a while. The PET scan result does not have me lighting up like a Christmas tree, but confirmed that the disease is mainly confined to the lymph nodes on the right hand side of my neck, with possibly a little activity in the deep nodes near my pancreas. I suppose it feels worse to me because of the physical effect it is having on my speech, which is a constant reminder, but in reality the extent is similar to that when I had my first post-transplant PET scan in March.

I saw Rob, the Specialist Registrar today, and we discussed a range of options. These include some drug regimes (including Thalidomide) and the possibility of chemotherapy. The problem with chemotherapy is that it wouldn’t do the donor lymphocytes any good, and while Thalidomide is an immune system modulator, it would work best with the donor lymphocytes, so the plan at the moment is to continue with the donor lymphocyte regime and keep the Thalidomide in reserve. The donor Lymphocytes should trigger off the GvHd, and more significantly, the desired Graft V Lymphoma effect that was working so spectacularly well up until August. Meanwhile if the nodes in my neck do get any bigger, local radiotherapy would serve to shrink them.

One other option, suggested by my friend (who I can now identify as Lisa), is for a second opinion at Southampton, where there is a centre of excellence in Lymphomas (particularly mantle cell lymphomas) and my doctor yesterday agreed to refer me there. I have also discussed this with the team at Guy’s, and they are quite happy, so we will see what happens with that approach.

I also saw Tammy (the stem cell scientist) who assured me that there are two remaining lymphocyte doses in the freezer, and she will keep them in the bank for me! If we need more, they can be obtained from the original donor, so wherever you are, please wrap up warmly, take care crossing the road etc… I may need you again! (For lymphocytes, not stem cells)

So that, and coupled with the autumn sunshine, has made me feel a WHOLE lot better and I can, with some conviction, continue Onwards and Upwards!

Some of you may have noticed (Gillian and Richard did – thank you for the record number of comments BTW!) that the system was off again last night. Having sorted everything out, when I came to look at how the data was distributed across the new disk drive, I wasn’t entirely satisfied, so while the computer was apart, I decided to tweak it again. In tech terms, I had to change the partition table, which meant saving all the data and repeating last week’s exercise! It went much more smoothly this time (it helps when you have some idea of what to do, rather than by learning on the fly) and most of the time was taken with copying the data back onto the new drive. But it is now pretty much as I want it!
And as a picture is worth 2000 words, here are a couple. The first shows the Linux machine (the web and blog server) in the foreground, with the old disk connected at the side. The big machine in the background is a dual boot Windows/Linux computer.
The RAID disks (disconnected) are on the top of it, and the RAID controller is resting on the top of the Linux machine. The second photo is just a close up of the Linux computer.

Back in the real world, the next major event is the Funeral and Memorial Service for my Father-in-Law on Friday. My next visit to Guy’s is on Monday.

And finally – the remaining conservatory furniture should be here by next Wednesday!

GvHd? Bring it on! Onwards & Upwards!

Tags: Computing, Linux

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