Tuesday, 30 March 2010

Step 3...

The end of the chemo session on the Wednesday itself left me very cheerful, slightly beginning to feel shock at the enormity of what's happened to me and, as before with the T treatment, perfectly ok for the first couple of days (with the exception of the sporadic tiredness being more immediate and extreme than before). However come the weekend I had the most intense chemo-head feeling, twitchy fatigue, extreme deep cough and pain in the bronchial area that any of the three T treatments has so far brought. This has lasted pretty well till today when it is beginning to calm down a little. The painkiller situation was not too bad again however, only needed a couple of ibuprofen. The worst aspects this time I think have been the emotional kickback and the feeling at the most exhausted times that I'm on the verge of a heart attack (who knows, perhaps I was, these are heavy-duty chemicals!).

The emotional is partly because the end of the treatment leaves you with this funny feeling that you're no longer doing something helpful, you've stopped, isn't that risky? But largely for me it's the realisation that no matter how supportive some people are through these things, you're not really anyone's specific responsibility, which with the best will in the world can make you feel terribly insecure, particularly as it unquestionably involves facing your own mortality far more directly than people without an illness will be doing at this age (or even much older!). Add in a few toxic chemicals and all sorts of horrible feelings creep out of the woodwork. (Mike, as prime carer-for-me has not necessarily had a very easy time of it this last few weeks and probably could do with some support too). No doubt the radiotherapy will replace that feeling of not doing anything to counter the cancer, but once that ends I really will feel it I imagine. Just have to focus on getting some sort of normality back I guess, and popping the Tamoxifen.

With characteristic excellence at communication nobody warned me that I should be available for any specific dates for my radiotherapy planning. So they put the date on one of the days that we're away (despite actually knowing this was a date we were away) and had to be asked to re-arrange it which has a knock-on delay on the radiotherapy itself. I decided I would chase this re-arrangement even if that meant I was being a pain rather than wait any longer for them to get back to me and got an answerphone message saying the woman re-organising it was now on leave until mid-April and there would be nobody checking these messages. How cool is that! So I eventually got someone else through the switchboard who kindly arranged for my planning CT scan to be at 10am on the 12th April and even more kindly booked the radiotherapy itself to start the day after my birthday, so at least I won't have to do it on my birthday! It will be every day for five weeks which means Fri 23rd, 26th-30th, May 4th-7th missing the Bank Hol Mon, 10th-14th, 17th-21st and 24th-28th, ending neatly just before the Bank Holiday weekend and half-term week (though the children will be spending most of the half-term with John).

Going to the latest SFO exodus party for the early part of the evening tomorrow so may see some readers there... Meanwhile thank you to Lisa (Matt and Ellie's mum), who very kindly re-iterated her offer of help, gave the children an Easter egg each and me a copy of Good Housekeeping! It may be the chemicals but I burst into tears! So kind. Have a good Easter everyone. I'm hoping to have a break from posting for a little while but will check in to see if anyone is commenting.

Tuesday, 23 March 2010

last chemo

Well I've just heard that my blood count is fine (rather better than on previous occasions in fact, probably due to all the extra stuff they pumped into me during my stay in hospital) so the last chemo is going ahead tomorrow. My mood finally lifted a bit at about midday yesterday, and it really did feel quite specifically like that time, so whether there's a bit of a chemical/hormonal influence going on, or whether it was to do with telling the consultant everything that was wrong with my stay in hospital followed by dissolving into tears on her in the morning I don't know. (Don't worry, they were assertive tears, not wussy ones). However I could feel a bit of extra energy coming back in (again almost chemically) and pulled off the best roast pork dinner (postponed from Sunday cos Gabriel was a bit unwell so had to be dumped on his poor dad at short notice) I've managed in a long time. Organic pork and locally scrumped apples see. Does the trick.

So now it's the recovery from this one to get through, hopefully without getting any infection this time. I'm beginning to get the side-effect of the nerve endings in fingers and toes becoming painful, which is currently only showing as blood under the fingernails (yuk - some people have their nails split all the way down or come off altogether which sounds incredibly painful and hard to deal with). I'm hoping mine doesn't develop to that after this chemo. At the moment it looks and feels as though I've slammed a car door on my fingers which makes it really hard to handle things, open packets, pull washing out of the machine etc (enter kids stage left). Not sure how you operate at all once they split or come off - must be like chewing steak with a mouthful of baby teeth that are all wobbly and about to come out. Presumably you just don't.

In order to safeguard my few days away in Essex with Mike I shall be avoiding all possible routes of infection for the next couple of weeks until I'm sure I'm back up to normal blood count - please don't anyone be offended if that means my cancelling at short notice for something that might normally seem trivial.

So that'll be that. On to the radiotherapy. Let's hope I don't have to go through chemo again, or not for many years if I do - can't say I'll miss it.

Monday, 22 March 2010

hoping for the last time

Haven't really managed to shake the depression that that stay in hospital provoked - don't seem to be able to rise above it all. Hopefully the spring weather will lift my spirits over the next few days (don't tell me, snow is forecast?)

Off to my pre-chemo appt which I hope will show my blood count is high enough to have the final chemo on Wednesday. If not it slips by a week, as does my state of mind :-(

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.

Thursday, 11 March 2010

Free texts and minutes?

No, not an advert... A plea!

If you have any of the above, Belinda would love you to make use of them and contact her tomorrow as she's a bit bored!

Update: Temp still up, blood count low. Antibiotics flowing freely. Tis possible she'll be discharged on Saturday - just in time for Mothers Day at home with the kids.

It's possible that the final chemo session may be delayed for a week, buggering up our scheduled post-Easter break in rural Essex spectacularly :o(

Go on, give her a call... You know you want to!


Why him? I hear you ask.
And what sort of time is that to be posting on her blog? You might also be asking....

Well, listen up and all will become clear.

At about 3:50 pm on Wednesday, B decided to take her temperature as she felt a bit flushed. The benchmark is 37 C. It was high. It was high the time after that and the time after that too.

That's bad cos it means there is a risk of infection and she may need lots of intravenous antibiotics in a protected environment.

She rang the Oncology team at St Georges who said "Come in to A&E. Wave your "I'm a chemo queen" discount card and you'll be fast tracked". I met her at 5:50 at A&E (I'm doing a short contract at St Georges) and sure enough she was triaged, cubicled and seen by the Oncology SHO pretty quickly. They said (eventually) that she'd have to stay in - and got her started on IV antibiotics.

The trouble was it was 9:45 before they decided to move her to a ward. Nearly three hours in with the coughs, sneezes, vomiting masses. When we got the ward, the bed manager had not specified a side ward even though she was suspected of having an infection and needing extra protection.

The Bed Manager was challenged (brilliantly) by a staff nurse but said the 2 (apparently free) side wards were needed so B was wheeled back to A&E where we sat, she getting hotter and hotter and more and more irritated - and then angry - before they finally moved her to a bed they'd known about for about an hour (wait for it) ON THE ONCOLOGY WARD!!! I left her at 11:40 finally receiving the care her condition was supposed to ensure comes as a priority.

I am (and I hate to say this) absolutely fuming at the incompetence. The process was totally inadequate and inept - and when I get in tomorrow I'm emailing my thoughts to the Chief Executive cos I've had enough.

M'off now. More tomorrow :o(

Tuesday, 9 March 2010

nearly all better

Well it's been better this time than last in some ways - I took only one set of anti-sickness pills and haven't had to resort to painkillers at all, having had the same twitchy pains in much smaller measure than the last time. What has been worse is the tiredness which is really becoming more noticeable now - a trip to Wimbledon for a wee bit of nothing to get really left me having to take a breather on the sofa for a good 10 mins when I got back.

The real nuisance this time has been what I think I've seen described elsewhere as "chemo-brain" - that bizarre restless churning over of endless thought processes. It's a bit like a fever in a way, in that it's not just normal trains of thought but almost mathematical or scientific programs running - the brain thinking that happens because of that, and that follows, and maybe that's why this happens and .... on and on and on, awake and asleep. The only thing that rescues it from being awful is that you're so immersed in it, like Alice in Wonderland meeting each morph of reality, that you're not objectively aware of it torturing you, you're actually having those conversations with your brain. So it doesn't really feel like something to suffer until you're beginning to come out of one of the spells and you think please, stop thinking! Give me a rest!

Of course the other person it does feel like suffering to is probably Mike, my constant loving support, and anyone like Emma who's had any kind of conversation with me over the last few days - if I sounded weird I'm sorry, I was trying to keep it real! Very very odd indeed, and like so much about this experience, it has made me think a lot about what it must be like for people who suffer these things as permanent disabilities or conditions that they live through all the time. Bloody awful, don't know how they do it. She said, completely assuming that these things will be going away once the chemo has finished when in fact there is a chance they can reverberate for a number of months or even years afterwards. Let's hope not.

Saturday, 6 March 2010

waiting for the hit...

Once again, so far so good, and it's Saturday so I'm doing better than last time. Feel totally spaced however and have been doing a quarter of the nil I was doing last time round which may account for the improvement. Am just hoping it doesn't kick in as big time as before. The bluesy feeling has already started but I'll just counter that by going clubbing.

Nothing more to add - you feeling as bored by this as me?

Tuesday, 2 March 2010

No 5 looms...

Tomorrow's the day for number 5, which needless to say after last time I am not looking forward to at all. Oh well, resign myself to a possible good couple of days before it all kicks in.

I also now have my appt for March 17th with the radiotherapist, when I shall learn the joys of what's in store for the latter half of April and most of May. Sure it can't be as bad as the chemo - really can't wait for that to be over.

I so want my body back!