Peter’s Hospital Diary

Just a quick update as the ward round has just visited. There is a bit of concern about my kidney function and cyclosporin levels, so I have had to go back to IV Cyclosporin. The main effect of this is that I am unlikely to be discharged before next week as I will need to be stable on oral drugs before I can go. Bit of a blow, but then worse things happen at sea, as we have just seen…

And a welcome visit by David!

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Guess what? The weather is just the same as yesterday, although the wind has picked up a bit.

I am a bit concerned that these daily posts are getting repetitive, but then there isn’t a lot that changes in my little world at the moment. On a lighter side, I must be getting institutionalised – yesterday I couldn’t remember what day of the week it was when I came to type in the title!

I felt rough this morning, a bit of “That was one pint too many last nightâ€? (I wish) feeling, but a paracetamol has sorted that out, and I think I have pinpointed the cause of yesterdays problems – the calcium tabs. These seem to have the effect of ‘fizzing up’ an empty stomach with the inevitable result. So this morning I have left those until much later.

Again forgoing the cooked breakfast I ventured down to the day room for some cereal. There is a strange protocol walking down the ward; not to linger and look ahead, especially where beds may not have the curtains round them, but the occupant is asleep. (Bit like commuters on the tube avoiding eye contact!) On a serious note, it does make me remember that however ill I might be feeling, there are many far worse.

Two visitors yesterday, Mike, from work (technically still my boss) called in and we had a chat and a catch up for an hour or so, to be followed by Joyce, an old friend from post-university days. It has been a while since we last saw each other so time flew by. She kindly brought me a book (Thank you Joyce) “Does Anything Eat Waspsâ€? – a selection of Q&A taken from “New Scientistâ€? magazine. I’m not going to write a book review, but it is brilliant – almost unputdownable!

There was another ward round in the afternoon. My Cyclosporin levels are OK but I am still a little dehydrated, so I had a saline drip up until 2 this morning (which doesn’t help a good nights sleep). Current release date is still looking like Monday/Tuesday.

And although I rarely watch day time TV, there is a cookery programme on this morning, where the food looks appetising – even some steamed fish – so if I can watch that OK, I must be on the mend!

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It’s another cold morning here in London, not a breath of wind, and the prospect of some snow later!

I went to bed last night feeling slightly off colour, and only slept fitfully last night, but this morning I felt a lot better. I have now decided to eschew the cooked breakfasts in favour of the cereal-and-milk variety. Much safer, or so I thought. Having had a bowl of cereal, and a cup of tea in the day room with my fellow transplant patient (Jean) we were summoned back to our rooms for the ward round. (We did suggest that they might like to come to us…)

All was well until I started to walk, then the contents of my stomach started to intermix – with unpleasant results. Part of the problem may have been the 2 cups of cold water I had drunk to wash down the drugs 10 minutes before. Lesson learned! (Don’t eat Rice Krispies!)

Onto more pleasant things… The ward round went well. The Friday morning round is usually a big one, with a consultant (Matthew) and the two House officers). Overall they are pleased with the progress, and if all continues to go well, there is the possibility of release on Monday or Tuesday. The cause of the infection has been found, and they want to make sure that it is cleared up and that I am properly hydrated before letting me loose on the streets.

Yesterday afternoon started with quite a good lunch (in fact I began to feel guilty about some of my comments, although after this morning…!) and as the antibiotics did their job I started to feel less lethargic. There was a ward round in the afternoon and we discussed some of the blood results – one of tests shows a higher than normal level of broken cells, though this is not uncommon if you have had a splenectomy). My haemoglobin levels were still quite low so I had two units of blood infused, and a litre of fluids with potassium to correct my electrolyte balance. (The noise of the pump doesn’t make for a peaceful night!)

I had a welcome visit from Greg (my former section head when I was working in Bristol). We had a long chat for about 90 minutes until he had to go for a meeting.

I finally got round to writing some words for a patient information booklet that Guy’s is producing for transplant patients. This is to advise transplant patient what they might need to bring with them on admission.

Have to smile – as I sit here typing, the man who runs the paper trolley has just popped in with my daily paper, could life get any better?

Yes it could! Kim has just given me the best back and shoulders massage I have ever had. I’m going to post this, and then lie back in the calmness it has induced……….

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Another misty start to the day again – and today is t+14 – incredible how quickly time has gone by, but now it’s official – I’ve had enough! However it looks as if I may have to stay until Monday. (But on the bright side, I’ll see Kim the Aromatherapist again!)

The day has been standard so far – Obs, bloods and the morning drugs, including the chalky chews (they’ll never catch on in the sweet shops). Breakfast came and went and I am just waiting for the morning infusion of Itraconazole to complete.

I felt very tired yesterday afternoon, and spent a lot of it dozing – I do feel very slothful in here. My only visitors were from the medical staff (Salah,the Transplant Registrar, and Sheeba, the SHO) closely followed by Rachel, the dietician.

Rachel has been a regular visitor from the date of my admission where she suggested a feeding tube (declined!) and then on a regular basis to ensure that my nutrition is OK. (Don’t you just have to love someone who tells you to eat all the ‘bad’ things – chocolate, puddings, calorie dense stuff!). Of course our conversations have revolved around hospital food (which is actually prepared at St Thomas’s and chilled for its journey here, where it is reheated and distributed). She saw my comments on it (here) and has taken a copy to add to evidence she is collecting to try to change the system. Good luck Rachel, the whole ward will be behind you!

On the subject of food, it wasn’t until 7 o’clock arrived that I realised that dinner hadn’t. I made myself some chicken soup – which stayed down for about 5 minutes. In my earlier talk with Rachel, she had said that my stomach would be very acid. The effect of the soup on my stomach was like dropping an Alka Seltzer in water! That is probably way too much information, so I’ll close the subject.

Oh yes, the light bulb that Katie bought three weeks ago failed yesterday afternoon. A search of the ward has so far failed to find one… any one got a light?

(P.S. – A light bulb has just arrived – let there be light!)

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The forecast mist has materialised, St Paul’s looked very ghostly (or should that be spectral?) shrouded in the mist.

So far today has gone well, Obs at a more civilised time of 7:15 (Thank you Sinead) and I have had a visit by Sheeba (one of the medical team, and Viki – the haemotology nurse specialist. The IV Itraconazole has just been infused – I am NOT looking forward to going back to the oral form, although the rest of my drug regime is gradually changing to oral. I have just been given some calcium tablets to chew – think very finely ground strawberry (artificial medical strawberry) flavoured compressed chalk…

I’m not sure if the Hickman line will remain in place when I go – it makes taking blood and giving IV drugs very easy, but can be a source of infection and needs careful looking after.

Yesterday continued with a surprise visit to the X ray department for a chest x ray. Again I was chauffeured in a wheelchair, but I think this porter must have aspirations to be a racing driver! We shot along the corridors, wind whistling in my hair (well, it would have done if I had any…) I elected to take a gentle stroll back!

After lunch, over which we will draw a merciful veil (beige!) the sun emerged and I went to sit out of the room on the other side of the ward, which is again bereft of beds. Very pleasant in the sunlight, and then a visit by Nicki and Rachel from City Hospital.

Some of you may know that I have appeared on CH in the past, after both the self donated transplants. This time the team have been filming snapshots of my progress over the last three months, and how it has lead to the transplant. We had a natter about that, and then a general chat before they headed back to their home – walking in preparation for the Southern/ 100Km walk – good luck!

I had to smile during the afternoon. One of the hospital cleaners turned up with an industrial vacuum cleaner. The floors are all polished tiles, and so easy to clean. This cleaner was designed to clean right up into the corners and along edges – but only if it is pushed there! I don’t know when the bag was last changed or emptied, but looking in the beams of sunlight, there seemed to be more dust and fluff in the air after the cleaning effort than before! A dust redistribution exercise, rather than dust removal!

Felicity arrived just in time to witness dark beige dinner, and to take some of the surplus clothes and stuff that I have accumulated. During the course of the evening, I began to feel shivery, and my temperature started increasing – leading to the suspicion that I was developing an infection. I suppose it was inevitable really – it happened on both the last transplants, although that was when I was neutropenic. My neutrophil count today was 2.4 – slightly down on yesterday, but still within range. Anyway, at midnight I started intravenous antibiotics and this morning my temperature is back to normal, and I feel a lot better! One downside is that I might not be able to go home on Friday if I am still on the IV antibiotics – it might be delayed until Monday – but I’ll keep on lobbying!

The news of the blog has reached my fellow isolationist, another Mark, who has posted the occasional comment. Yesterday afternoon saw the arrival of Jean – her husband also asked for details. Mark will, we hope be out of isolation soon. Jean, we wish you all the best.

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Another morning like yesterday – the forecast mist hasn’t appeared, the building work outside (I think it is a car park) continues!

I am a bit ahead of myself today – it was a bit of a restless night so I was up fairly early. I have given up on the cooked breakfast – I’ve just had some cereal, Rice Krispies, which although taste a bit like cardboard, at least have some nourishment. I am also reminded how fortunate I am in a side room, the smell on the ward this morning was pretty bad. Maybe I smell that bad – I’d better have a shower and get dressed for when the ward round starts! I suppose the same mechanism that has affected my sense of taste has affected smell as well, after all, they are closely related, but it does seem hyper sensitive. I think it is the smell of food as much as the taste that puts me off.

Not a lot else to report this morning!

Well the really good news of yesterday was that my counts were improving and the isolation precautions could be relaxed. I am still in the same room, but visitors no longer need the plastic aprons. I also move off the neutropenic diet onto ‘normal’ hospital food, which might not be so bland. If all goes well, I may be out by Friday. I hope so!

My first trip out was down to get a paper – and when I got back I had to lie down for a few minutes – I felt very weak! The next venture out was in a chauffeur driven wheel chair down to ultrasound to check up on my kidneys, although the back pain has gone now. The ultrasound showed nothing untoward, so I took a leisurely stroll back to the ward (my chauffeur being called elsewhere!)

Melinda called in this evening, on the way back from a meeting at Guy’s. We cracked a (small) bottle of wine between us in celebration!

The mineral infusions have continued with potassium. Apparently the levels are very low, leading to an increased risk of heart attack! Although that risk is very low, definitely one to avoid!
Fingers crossed that it continues to go well…

On a completely different note, the telephone line at the other end of the blog server has been repaired, so the intermittent access of the last 5 days should be over. I will be moving the blog to my server when I get out – I’ll post more details nearer the time.

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Another grey day today in London, St Paul’s looks quite grubby without the sun shining on it!

A reasonable start to the day. The kidney pain seems to have gone as abruptly as it arrived. It might have been a reaction to the GCSF, or a mineral imbalance. I have started taking potassium tablets, and last night I had a magnesium infusion. That lasted 4 hours, and didn’t help the sleeplessness! I may have an utrasound scan of my kidneys just to check they are OK.

This morning followed the usual pattern, although Obs were a bit later. I felt a bit queasy this morning, not helped by breakfast which was worse than usual; so having rejected that in favour of a banana and a fortified milk drink, I treated myself to a lie-in! In fact I was still in bed when the ward round appeared.

Now for the really good news. Progress has been very good, and my neutrophil and whie blood cell count has started picking up. If this trend continues, I might be out of isolation and possibly on my wasy home by Friday! What I mustn’t do is get my hopes up, just in case this is a false dawn, and of course it isn’t the end of the process, but the start of the next phase, which is equally critical, but at least I will be an outpatient, with bi-weekly checks. That won’t be too bad as one of those will be at Southampton, so I will only be coming up to London once a week. The only downside is that I might have to take Itraconazole syrup again… (shudders involuntarily)

My parents came down yesterday for the afternoon so that passed quickly. I didn’t have any Cyclosporin as the blood analysis hadn’t come back from the lab. Over the next couple of days I will be switching to oral Cyclosporin in preparation for discharge!

I will have mixed feelings about leaving. Of course it will be good to be home, decent food, uninterrupted sleep etc, but I shall miss the wonderful staff here, who have looked after me, and of course all of you who have visited and helped the time pass so quickly.

**STOP PRESS** – Neutrophil count came back at 2.7 and I am out of isolation!!

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It’s another bright, crisp day here. The sky is a crystal clear powder blue, with the sun gleaming off St Pauls again. The wind is still from the east, so I expect it is still chilly outside. In fact it is a ‘cool’ 26C inside!

The morning has gone reasonably well. I had problems sleeping last night, mainly because I started getting back pain yesterday afternoon, round my kidneys. This got progressively worse until I had a couple of paracetamol before I went to bed. They wore off at about 1 o’clock, when I had a couple more, and also had a visit by the duty SHO. The paracetamol did the trick until 7:15 this morning when the day started with Obs, bloods and then breakfast, all carefully timed to let me just start to doze off before the next call! The consensus of opinion on the kidney pain is that it is likely to be an infection, and a sample has been sent off for analysis.

Yesterday afternoon was spent in the company of Felicity and Louise, a friend of ours from when I was in the Falklands. That was followed by a dose of Cyclosporin and then a quiet evening in front of the TV.

The last dose of chemo is making its final presence felt – what little hair that had started growing back is now falling out! Here comes the tufty look again!

Now to look at yesterday’s papers!

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It looks really cold outside today, and Felicity, who has just arrived, has confirmed it! The flag on Southwark Cathedral is showing quite a stiff easterly breeze.

So far today has followed the usual pattern, observations, blood and the anti-fungal drug at 7:15 this morning – nothing like a lie-in on a Saturday morning! Breakfast was hot, and served without the slimey baked beans. This is followed by bed making and room cleaning!

Felicity arrived yesterday afternoon, just after I had had another massage (back and shoulders, very relaxing!) by Kim from The Richard Dimbleby Cancer Fund (see the link and last Friday’s post!) and just before I started another platelet transfusion. This was followed by the Cyclosporin. I have also started GCSF (Germ Cell Stimulating Factor). This is a hormone (manufactured in the ovaries of Chinese Hamsters – no – I don’t know the tehnical details) which encourages the bone marrow to start stem cell production. These blood stem cells go on to become the various cells that make up blood. It is a subcutaneous injection which I normally give myself. I have had lots of practice in the last few years as this has been a feature of all the transplants. Felicity stayed overnight in a nearby flat owned by Marian and Martin, friends of ours from home. Thank you!

Last night was a bit restless – I’m not sure if I am getting a cold, or just that my mouth is very dry. On the plus side, the mucositis seems to have reduced, although my sense of taste is still altered.

Which leads back to hospital food. It isn’t just my sense of taste! Felicity, in her role as food guru, tried last night’s macaroni cheese and declared it to be tasteless. However, lunch today was deemed tasty, although my sense of taste didn’t think so. The chocolate sponge and custard was OK though!

So on with the waiting game for the new cells to get to work!

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Another cold but bright morning here in London, the temperature in my room has drooped to 27C! The forecast snow has yet to appear. The building work outside is in a quiet phase (or very extended tea break) apart from the massed sound of multiple angle grinders yesterday afternoon.

Really good night sleep last night, the morning observations were delayed and I slept right through from the 2 o’clock ones to 7:30! My mouth is getting a little sore, but this is always worse first thing in the morning, and not nearly bad enough to stop eating – and breakfast was better today.

If you can get into the blog, you will know that we are having (or have had) problems with the telephone line at the server end of things. Re-configuring proved to be greater task than first thought, so we are living with the erratic phone line, which should be repaired by Monday.

I seem to be ahead of myself this morning, the ward round has yet to take place, and I have had my shower – but no exercise bike this morning.

Yesterday afternoon was broken by a welcome visit from Mark (blog hoster) and his wife, Sue. They were in London for other reasons, but dropped in for an hour. Their visit coincided with the Cyclosporin infusion – resumed now that we have established an accurate baseline for the drug.

The general consensus from the ward rounds is that things are going well, long may that continue!

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