Thursday, 18 March 2010

Split ends and horror stories - plus radiotherapy to come

Would you believe it, I have a fluffy spattering of hair growing back to about 1/8 inch and already I've got a split end.

Well that stay in hospital was a real blow to my confidence and I have only just felt able to put anything here about it. 5 hours waiting to get to the ward which was completely unnecessary as Mike has described. I was then woken during the night to be asked by a doctor what medication I had been given (I explained my last qualification was legal not medical) because they had no idea where my drugs chart was. The next time I was woken was to be asked which blood samples had been taken because they had no trace of one I should have had on their record. Was one of them a large bottle? What's large?!


To add to my sleep happiness we also had the seemingly complulsory wanderer - a man this time but at least he had a full-time minder and didn't scream psychotically at any point or stand at the end of my bed.

I was told that they needed to measure the fluids in and out (as I was on intravenous antibiotics) so they gave me an elegant plastic jug to wee into. I had no objection to this, other than that with visitors coming, it isn't the most pleasant sight/aroma to behold near my bed, so when it was continuously left there (and one may deduce therefore not actually being measured at all) I took it up to them at the desk, until they told me that I could have a label to put on the jug and could just leave it in the toilet where it would be collected and measured. So I duly filled it up over the next three occasions until it was full, gave up chasing it and just went to the toilet as normal, each time looking at this jug on the windowsill in the toilet until I left on Saturday. It could well still be there (it had been joined by another that had filled up and was just sitting there too).

They left my notes at the bottom of my bed at one point which I rather stupidly said I would occupy myself by reading in the presence of one of the nurses. She snatched them off me and said I wasn't allowed to look at them because they sometimes had things in that the doctor didn't want patients to see (!) and that I could apply to see them. I explained that applying didn't mean you could be turned down, it meant an institution could charge you for the cost of copying your notes to you, but that cut no ice with her and she duly took them up to the desk where they lay overnight for any bugger to look at (but not me, obviously, that's not allowed). Several unsuccessful attempts to nick them back overnight concluded in triumph the next morning when no-one was looking (practice at flashing what used to be my boob for all those years really paid off for that sleight of hand cos I was surrounded by staff). The notes were full of inaccuracies. Some examples: next of kin Mike (wrong), temp on arrival 39C (wrong) tumour 60mm (wrong) "lives with partner" (WRONG - this example is worrying as clinical decisions like whether someone is safe to go home can be made in the future on the basis of misinformation like this. Where on earth did they get this stuff from - do they just put what they presume?).

On Friday night one of my two lovely ward-mates was to be moved to another ward and half-jokily said it would of course be in the middle of the night, not at a civilised hour. How right she was! (1.15am and one of the staff cleaning the bed switched the telly on to watch it while his working partner went to get something. He switched it off again pretty quickly though...!) Meanwhile a lovely woman probably in her mid-late sixties was sitting in the day room earlier on when I went to watch The Bubble on telly, in her nightgear waiting to move into the vacated bed. She had been told it might take an hour but that was at 9.30. No-one came and checked on her in the meantime and nobody had even made her a cup of tea. I know they're busy, but they could at the very least have shown her where the tea trolley was to make her own. So I made her a cup of tea, found her a newspaper and checked in on her a couple of times until she arrived in our ward.

My other ward-mate , who had secondary cancer that had spread to the bones, had great difficulty lying on her back and they desperately needed to do an MRI scan to analyse what was in the spine causing compression. After she had returned from it having been in such pain she was unable to lie in it for long enough to get a proper series of images, the doctor expressed surprise they hadn't sedated her or given her localised painkillers to enable the scan to be completed. She said the guy doing the scan had said the same. Rocket science?! These scans cost a fortune and that one was wasted for what looks like no intelligent reason. Needless to say she had to do it again on the Monday - but had to spend the weekend in hospital, missing Mother's Day at home. There were similar stories with anti-emetics and anti-constipation drugs just not being offered until far too late, causing unnecessary suffering to patients who didn't realise something could be done to alleviate it. A checklist for the doctors perhaps?

So you can imagine that on the Saturday when I was to be allowed out I was straining at the bit. I had my last intravenous antibiotic and my ricicles, had packed my case, and said to the nurse would now be a sensible time to get showered as I wasn't awaiting the drugs round and she said yes. I returned to find my two ward-mates sitting in the day room while the ward (where of course all my clothes and effects were) was being intensively cleaned for an hour and a half and all the bed curtains had been taken down. (Entertainingly my ward-mates had been asked to sign a disclaimer to say they understood the hospital was not responsible for loss of their belongings just before the contractors came in to do this clean, but we didn't realise that until after. Why would you sign a disclaimer without getting any benefit in return? So I advised them not to (one of them was falling asleep with exhaustion when she was being asked to sign!) - I certainly wasn't asked to sign anything and wouldn't have done). I'm afraid I had a go at the nurse about the clean. What on earth prevents them from warning you that you will be unable to use the ward for an hour and a half at some stage so plan your toilette/exercises/anything else individual patients are supposed to do during the day? This is not a matter of resources or efficiency or, I suspect, St George's particularly for that matter - it's a matter of courtesy and communication and not treating patients like stuffed cushions who are merely passive recipients of clinical treatment. Something about the care side of nursing and medical care has gone horribly and deeply wrong in the NHS and something desperately needs to happen about it. No-one else who is a patient with me has expressed any surprise or had anything but similar stories to tell, and these are not people who are just moaning, being negative or giving an unbalanced view. Everyone is pretty much in agreement that there are some super nurses (the overwhelming majority of them in fact) and on that level I didn't have a bad time at all. Yet somehow this appallingly neglectful attitude undercuts anything good because it is a systemic failure to give proper care, and I really don't understand it. It's something that no individual is responsible for because... no individual appears to be responsible for it. They need to involve patients properly in their care, even if it's to explain how their own system may be going wrong or inefficient - most people don't mind as long as they understand what's happening (or not happening). It's awful, and I came away more depressed than at any point since they were investigating whether it had spread back in August/September. And because I have seen people who now have secondary cancer after 5 or 6 years of the primary cancer, I have seen this treatment of them and I think of whether I will be in this position if it comes back and it has left me very, very upset and frightened.

Just to prove I'm not all negative - there was a very nice lamb "korma" which blew me head off and certainly wasn't a korma but was delicious (yes I mean that word) and a very nice breaded haddock and mushy peas. The showers and whole ward was very clean and constantly being cleaned. The nurses were all pleasant as I have said, as were the doctors. But although we may have lost the "how are we today dear?" brand of nursing, there is still a huge amount to be corrected on comunication, both to patients and between staff groups, who, to be fair, also suffer from the diabolical lack of joined-upness (and it is the good nurses who I think suffer from this the most, apart from the patients). Very depressing.

I have also heard from a fellow patient who suffered the same (frankly cruel) treatment as me in the recovery ward, including her husband not being contacted after being told she had arrived on the recovery ward, for hours, and phoning in to be put through to ward after ward because they couldn't track her down (she was still suffering on the recovery ward but, as they insisted to me, it's not routine to phone out to people from there). I have discovered the means to complain about all this and will be doing so, because so many of these things are happening to people who are either frail, old, vulnerable, or in pain, or several of these - or may be in the future, including me.

Yesterday I was back at hospital to see the radiography consultant - thanks Janet for coming with me and helping to turn it into more of a day out! I will be having radiotherapy every weekday (except bank hols) for five weeks and, assuming the last chemo next Wednesday doesn't slip, should be starting on the 19th April I believe. It will be at Royal Marsden, Sutton and Jackie has very kindly offered to set up a transport rota for days that either I or Mike won't be able to cover. There will be a scan beforehand for them to mark me up too. So by my calculations that should make the last session Monday 24th May, all being well. Then I can get back to my lapdancing career.

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