Peter’s Hospital Diary

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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….. now that BT has fixed the network problem.

All should be working normally!

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One week on from the transplant and feeling OK! There are some side effects from the chemo kicking in, a couple of mouth ulcers and sore gums, and my throat feels a bit irritated, but I can still swallow OK, and eat normally - although this morning’s breakfast plumbed new depths - cold and overcooked! However, last night I didn’t get any dinner at all (maybe the catering staff have been reading this!) So one of the nurses heated up some chicken soup - very nice - thank you Debbie!

It is a cold but bright morning here in London, no snow though!

The night was uneventful - punctuated as usual with the observations and the early morning blood collection. Nothing from the vein this morning though, all from the Hickman line. That was followed by breakfast, already described, the junior doctors’ ward round, and the IV Itraconazole, girth measurement (stop laughing over there!!) and weight. That has all finished, so I must go and use the exercise bike and shower.

Yesterday afternoon passed reasonably uneventfully, although I did need a platelet transfusion. I suspected as much after a large bruise formed on the area where blood was taken from the vein yesterday morning (for the cyclosporin levels). This was confirmed when a reading of 5 came back. Normal range is 150-400! I also had a visit from Viki, the Haematology Nurse Specialist, and Liz, who is another transplant specialist late of the Royal Marsden Hospital.

Felicity came up to see me yesterday and stayed for about 5 hours so I could catch up on all that is happening at home, as well as bringing some clean clothes. I also had some cyclosporin after the blood test confirmed that the levels were correct.

You may have had some problems getting the blog in the last 18 hours. Mark had a problem with his phone line, and lost broadband. Fortunately he has another BB connection, so after a bit of reconfiguring, got this back on line. However it takes up to 24 hours for all the Domain Name Servers (the servers that your browser uses convert human memorable names such as dellmar.net into a computer readable address like 21.123.200.94) to update across the internet so that your browser can find them! End of networking lesson!

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It looks cold and misty outside this morning - I can’t believe how quickly time is passing - nearly at the end of January!

The daily routine has continued this morning, with the exception that the morning drug dose has moved to about 9 o’clock - a far more civilised hour - although the observations at 7 o’clock still take place! This morning blood was taken from a vein rather than through the Hickman line so that an accurate measurement of the Cyclosporin levels can be obtained.

My ankle is less swollen today - evidence I hope that the chemo last week is attacking the disease in advance of the incoming immune system, and my weight is getting back to normal as the fluids taken in last week are expelled.

I had a visit from the transplant consultant yesterday afternoon. One of the reasons for measuring my girth (I really don’t like that word!) Is to check for another condition - VOD (Veno- Occlusive Disease) This is a very rare (but potentially serious) complication when the hepatic vein running through the liver becomes irritated and affects liver function. Symtoms include an enlarged liver and fluid retention, hence the measurements and concern over accurate fluid balance. All seems to be well so far - and the danger is pretty much over now. I was at slightly higher risk because of the previous treatment I have had but then doubling a very small risk is still a small risk!

One thing I have noticed is that my stomach seems sensitive (but that could be a Pavlovian reaction to the thought of the food) so I have started the anti-sickness drugs again.

Stephen (old friend from grammar school) happened to be in London yesterday, and dropped by for a welcome visit. He escaped the pink apron treatment - current fashion colour seems to be white!

Finally, there was a fascinating programme on BBC1 last night - the first of a series about alternative or complementary medicine. Last night dealt with acupuncture, and confirmed that there are measurable changes in brain activity caused by the insertion of the needles. I have had acupuncture in the last 12 months, and while I can’t say what it did, I certainly felt an effect in well being afterwards. I’m looking forward to the next in the TV series.

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The weather has improved again - St Paul’s was gleaming whitely under a pale blue sky this morning - looking just like the Capitol Building in Washington. The nurses say that it is very cold outside although it is still 27C in my room!

Well the first day in isolation has passed uneventfully. I keep telling myself that it is just like being in a hotel - en-suite bathroom, constant room service, refrigerator, kettle, TV etc. But then the wake up call is usually user selected in a hotel, not every 4 hours, (or at 6:30 to give drugs - which would be of a completely different type in a hotel if some news stories are to be believed) and the refrigerator usually contains a mini bar, so there are some injections of reality to stop the fantasy!

Just after I wrote yesterday’s entry we had the ward round. Haematology doesn’t attract medical students, so there is no requirement to prepare a “difficult question of the dayâ€? for them, but the general consensus from the team was that progress is good so far (although it is early days.) My appetite continues to fade a bit. Now that I am in isolation, my food is cooked specially and tends to be either boiled fish or omelettes, unless I remember to order something different! The smell of boiled fish - especially after it has sat under a cover for 20 minutes… But I said I would write a separate page about hospital food… It is worthy of a chapter on its own!

Hot on the heels of the ward round came a visit by a representative from the Hospital Chaplaincy Service. We had a chat for about 10 minutes, covering life in hospital, etc, any spiritual need I might have (I refrained from comments about G&T) and then it was time for the next highlight - lunch - but we are back to food again - I must be running out of things to write about!

The afternoon passed quickly with a book, and then it was time for the Cyclosporin. That was put up late afternoon - then about three quarters of the way through, the nurse came in to take it down. The blood result showed that it was at 800 in my blood (I’m not sure what the units are) and it should be 150!!

I have queried that his morning, and the feeling is that the sample was contaminated. The drug is quite sticky and can remain in the Hickman line, even though it is flushed, and can contaminate the blood sample giving a false reading. The next sample may be taken from a different vein just to check. I don’t exhibit any symptoms of a high levels of Cyclosporin (tremors in the fingers) so all is probably well!

Soon be time for lunch (food again!)…

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It must be Monday as it looks very grey and misty over towards St Paul’s - just the sort of weather not to encourage you out on a Monday morning!

Still not in isolation, although as I write, the nurses are thinking of putting up the isolation precautions sign in advance of the blood test results. This is because the blood results yesterday showed that the counts are dropping, and although still have some neutrophils left, the chances are they will be down today. I’ll take some photos of my little room later and get them posted! (Stop Press - I am now in isolation - the door has clanged shut!!)

My parents visited again yesterday afternoon and stayed for about 3 hours. We were saying that we can’t believe I have been in here nearly 2 weeks. The time has flown by. I just hope the next few weeks in isolation pass as quickly.

There was a bit of commotion in the night, and looking out of the room this morning, the little sitting out area is now occupied by a patient occupied bed! I did notice some loud snoring during the night - I wonder if that is why he was moved? (Hope he hasn’t got the link to the blog!) Today started early anyway with the anti-fungal drug infusion at 6:45 this morning!

The current ‘concern’ is over the functioning of my kidneys. Fluid balance has always been a concern, and I have to carefully measure input and output (to use engineering terms) and also monitor my weight - remembering that a lite of saline equated to a kilogram in weight. I have put on weight while I am in here - I can’t believe it is the food, so it must be water retention. It is gradually dropping back to normal, although I was told this morning that I’m not drinking enough (water). My face is very puffy first thing in the morning (the chipmunk look) although that goes down after a couple of hours, and I’m told is a known side effect of the Cyclosporin.

There is some concern about my swollen leg. I have had a tendency to a swollen ankle since I had a lymph node biopsy last October. (Adding to the long list of scars - but at least this one is within my bikini line) It is thought that this is because an enlarged lymph node is partially blocking the drainage on my right leg. It got better after each of the two lots of chemo last year; and goes down at night, but sitting and standing tends to make it worse.

As an adjunct to measuring the circumference of my ankles, I am also having my ‘girth’ measured (makes me sound like a horse). I won’t give you details of the measurements, except to say that the only tape measure available on the ward is too short to go round me, so it is a two stage process involving lots of pen marks on my stomach! You have to smile!

Other than that, I still feel well. My sense of taste is definitely changing, and the ‘gag reflex’ seems a bit more sensitive (TMI) but I don’t have any mouth sores (yet). My appetite seems to be dropping off a bit, though wether that is the hospital food or changes caused by the chemo is hard to say!

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