Peter’s Hospital Diary

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!

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Finally got the system up and running on the new, bigger, quieter disk drive, so the major tweaking is complete! As always with these things, hindsight is wonderful, and I can now see where the problems lay! Oh well, it’s when things don’t go as expected that you start learning!

So now I can get back to using the blog as intended (and Gillian and Richard can start playing again!

And the next item on the health agenda is a visit to my GP tomorrow - that was to have been for a diving medical, however I’m not so sure about that now, and then up to Guy’s on Tuesday for the results of the PET scan. I haven’t heard from them, so it could be good news - in that I didn’t need to take the steroids they gave me - or bad, in that they didn’t want to spoil my holiday! We shall see, but in an optimistic mood, (and sorry about the downbeat one on Friday) I hope onwards and upwards…! (Richard - better cross those fingers again)

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