Peter’s Hospital Diary

Talked to Peter this afternoon and he is in good form. He dictated the following:

Feeling well, expect to be in for another 2-4 days. Tests tomorrow to see how well the treatment is going. Biggest problem is boredom. But the good news is that the food seems to have improved.

Treatment - nebuliser three times a day. Immunoglobulin to support the immune system while the nebuliser attack the bugs!

Unfortunately no internet access but I will respond when I am back home!

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Peter asked me to give everyone a quick update……

It was clear that Peter didn’t really appreciate how ill he was until yesterday afternoon (and as I visited him can vouch for the fact he looked very ill) when it was decided he needed some hospital care, consequently he got his first ride in an ambulance to Southampton General. There they have been rehydrating him and attempting to get his neutophil count back up to something approaching normal as well as treating his extremely sore mouth.

He called me this evening and sounded considerably better than yesterday (when I doubt he could even have held a phone) and told me about the cocaine mouthwash (very effective) and the other treatments he is getting. He will provide you the full gory details later in the week when he is discharged - hopefully Thursday.
All being well I will visit him in the next day or two and will take with me any comments posted so he doesn’t suffer too much from Blog withdrawal.

Mark

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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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Fittingly, it is another crystal clear day over St Pauls, but today is the day… 30 days after admission I am on my way out! It was a bit touch and go, because although the ultrasound showed nothing apparently wrong with my liver, there is still a marker showing up in the blood chemistry which is causing concern, so I have to return on Monday to the day unit to check Cyclosporin levels and to see if the marker is still there. But it will be so nice to spend the weekend at home, sleeping in my own bed, and no observations.

Now is the time to thank all those who have looked after and supported me in the last month. It is always dangerous to mention names, because there will be some I will miss, out, but on the nursing side there is Liz, the ward manager and her team, including Nicky, Sinead, Aili, Ellen, Grace, Johanna, Tom, Louise, Gary, Mick, Steve, Tom, Michelle, Raj, Clemmy, Thelma, Eric, and many more who were just shadowy figures doing the observations at night.

The nurse specialists, Viki, Liz and Karen; Rachel, the dietician, who took up the food battle; the unsung heroes on the cleaning staff..

The medical staff, including the transplant team, Drs Kazmi, Smith and Yeung, and their team of registrars and house officers, including Sala, Sally, Shabeena, Alice and several others whose name I didn’t catch, and of course Robert, in whose care I have been for the last 7 years since I was first diagnosed.

And then there are all of you who have visited me, or read the blog and commented or sent me emails of support - it really has made a difference! And last but not least, my parents and family who have visited and supported me in the darker moments. (Yes, there were some).

The blog will continue, although perhaps not so frequently. I will probably start a category on ‘Post Hospital’ and update as and when required - it has been great fun writing it - I hope reading it has been equally good. Interestingly the statistics indicate over 150 individuals reading it (based on IP addresses) And thanks to Mark for hosting it - I will move it onto my own server in the near future, but I’ll post when that happens.

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It looks a gin clear day outside - not a cloud in the sky, and the sun shining strongly, but it also looks very cold - even the temperature in my room has dropped - to just over 25C!

I’m feeling good this morning; we have had the usual start to the day, Obs, bloods etc. Breakfast was hot when it arrived, and all the indications are that tomorrow will be the day. There is still a little concern over liver function, one of the blood markers is abnormal, but the other one is OK, so I am drafting this while I am waiting for a porter to take me down to ultrasound for a quick examination.

I think the deciding factor on whether I go home or not will be how my Cyclosporin levels are falling off - definitely a question for the ward round!

I still can’t quite believe that it is over a month since I was admitted - I feel more than ready to go!

…Just returned from the ultrasound on my liver - all looking normal, so another tick in the box!

Yesterday afternoon passed quietly - I went back to the chair outside the room to sit in the sun and read a book. I had a reduced does of IV Cyclosporin, part of the weaning process! I had one visitor in the evening, a friend from Bristol who happened to be in London working, and then a reasonably early night, and another good night’s sleep. The 2 o’clock Obs seem to have been dropped, so apart from getting up to get rid of excess liquid, I slept really well

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Now it really is a month since I was admitted - and escape is on the horizon! Even the weather has turned and the sun was gleaming brightly on St Paul’s when I awoke this morning!

I had another good night’s sleep, and gentle awakening with the Obs, blood, followed by breakfast - which finally has the right ingredients - bacon and tomatoes!

I was heartened to get a visit by two first year medical students who wanted to learn about the ‘hospital experience’ from a patient perspective. I hope you got what you wanted! This is a far cry from when I was a student, sharing with medical students whose first exposure to patients was during the first clinical year - 3 years after starting the degree course!

I feel ready to go home, but I am still being weaned off the Cyclosporin in favour of the Mycophenolate Mofetil (MMF) which will take about another 48 hours. So provided nothing else untoward (like an infection) occurs, I hope to be out of here on Friday! I feel very tiggerish!

Felicity went home yesterday afternoon, after spending the morning with me, but she was followed by a visit from Stuart, my next door neighbour from home, who is working in London for a while. After he left, I settled down with a book until 9 o’clock, when I watched the next in the series about complementary medicines on BBC2. Last night was all about herbal medicines, which was fascinating!

So, without wishing to get my hopes up too high, 48 hours and counting!

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Well, I am still in my little room, and champing at the bit to go home - I feel ready to go now but I am resigned to a few more days yet! It is, incredibly, 27 days since I was admitted; tomorrow will be the start of the 5th week! The time has flown by!

This morning is yet again grey, with a westerly wind and a sky with little flecks of blue in it!

I had a good nights sleep - really deep at times! The cooked breakfast didn’t tun up at all this morning, which was a pity as I was almost looking forward to it - but then perhaps in a few days time I’ll be able to cook my own!

No sign of the ward round yet, although I have seen Sheeba, (house officer) who explained the reasons why I have temporarily changed immuno-suppressive drugs. I read the patient leaflet note for the alternative which explained that it is normally given to prevent rejection in heart, liver and kidney transplants. Reading that brings home the fact that it really is a transplant that I have had. It might not be as dramatic as a surgical transplant, but the consequences and side effects could be just as dramatic.

Yesterday afternoon passed pleasantly with a book, and then Felicity arrived in the late afternoon. She was closely followed by Elspeth (LeukaemiaCare) who stayed for about 45 minutes. Felicity stayed most of the evening before going back to our friends’ flat. She will be coming in again this morning.

Everything bodywise seems to be settling down. There is still a need to balance cyclosporin levels so that I can return to the oral preparation (which has been suspended in favour of this other drug) but the spike impaired kidney function seems to have gone. There is still a small spike in liver function, but I hope that today’s blood results will show that that is returning to normal.

Mark, my fellow patient, was in yesterday. He is now a day patient (he lives close enough to return if things go awry) - but I don’t intend to be far behind him!

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Just heard that I am moving rooms to make way for someone with greater clinical need for the facilities. The new room does not have a telephone… I will try to continue to post, but it may be fifficult.

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Having got over the initial disappointement that this is another Monday here, when I expected to be at home, I feel remarkably good Outside looks grey, but the wind has changed direction from last week - judging by the standard flying on Southark Cathedral.

Last night’s sleep was again fitful, but less disturbed than the night before. My fluid balance is looking good, the achy feelings have gone, my weight is pretty near that on admission, and, best of all, I feel good!

I have faced up to the cooked breakfast (or elements of it) and won, and the ward round has just concluded. The upshot is that there is still a little concern at getting the Cyclosporin levels stabilised and in my kidney function, so I will be having an IV Cyclosporin dose this morning. However the antibiotics have stopped, which should help settle my gut. This means that gut uptake from the oral tablets should get more predictable. So perhaps by the end of the week…

Talking of gut, I have been introduced to the “Bristol Stool Chart� (Few aspects of hospital life will go undocumented) To avoid doubt, we are not talking about stools of the three-legged or bar variety. Apart from the fact that I have to record frequency, colour, and description, I shall draw the subject to a close - I have probably already given far too much information!

Having read back over the weekend (and thank you for the comments) I probably was a little ‘down’ but today is another day! Onwards and upwards!

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