The last thing on my mind

6 minute read time.

No, Churchill Hospital, please pay attention. This is your arse. This is your elbow. Do you think you can remember that for five minutes together?

What have they done this time, do I hear you ask? What they did this time was send me a pre-chemo consultant appointment for 2.50 pm next Tuesday (one of those appointment times that may as well be called 'or any time we can manage to fit you in'), when I have chemo booked for midday on the same day. I know that time is meaningless, but the whole going backwards business is terribly complicated and I have never fully mastered it.

I think I have managed to get everything sorted. I phoned Dr Nicum's secretary on the Friday before the Bank Holiday - who knew there was a Bank Holiday last weekend? Took me by surprise, I can tell you - and she finally got back to me on Wednesday with a new appointment at 12.30 pm on Monday. Which rather begs the question: if they had a free appointment for 12.30 on Monday, why didn't they give it to me in the first place, especially after Judy yelled at them last time? Anyway: I also spoke to the Day Treatment Unit, who said they'd see what they could sort out so, what with one thing and another, we should be okay. Oh, and I have also remembered to phone the District Nurse and ask her to try to come before we have to set out for the hospital ...

All well and good, then, except - I am so tired; I really don't need all this running around trying to rearrange things, and all the telephone calls, and all the hassle. Can't they bloody well just get it right first time?

The whole business of chemo might be academic; my finger ends are now hurting really badly, and I do mean really badly, which is almost undoubtedly Taxol-related neuropathy (my feet aren't too good, either, although they do currently have pretty turquoise toenails), and I think it's time for a change of regimen. Regimen, regimen, REGIMEN. I thank you. I just hope the consultant agrees.

Come to think of it, it's about time I saw Shabani again; last time I saw her was July. The rest of the time it's any old random consultant who happens to have picked up my file, and I'm never completely convinced they've actually checked it before they start talking to me. But there's nothing I can do about that.

Oh, I had a random thought the other night, and managed to catch it before it died. When I was ickle, and I do mean very, very ickle, 16 or so, I used to volunteer at my local hospital - taking round cups of tea and then doing the washing up, thrilling stuff like that. In all the times I've been in the Churchill, I've never seen a volunteer. Does that not happen any more? Why? If anyone says 'health and safety', I shall look at them unless they can produce concrete evidence. Poor health and safety. They got blamed for Springsteen's Hyde Park gig getting cut off mid-song, you know, and one person there was so upset that he published an online rebuttal - for which he probably got into terrible trouble. But about 90% of stupid health and safety stories are made up, mostly by the redtops. I uterly diskard them.

What have I done since the last time I posted? I actually did manage a few measurable achievements: I've shelved my 'books read and reviewed' pile, and managed to sort out a dozen or so for Oxfam while I was about it, and I also now have the tidiest chest of drawers, pants drawer included, that you can imagine. This last was mostly courtesy of the most dreadful fit of insomnia that hit on Sunday night and, so far as I can tell, affected everyone in the house. Well, everyone apart from the cats.

'Everyone' included Lynn, who came up to stay for the above-mentioned surprise!Bank Holiday. I believe she's coming to babysit next week, too, as Judy is off to tidy up Penny's house. If anyone would like to come and tidy mine, please don't be shy. The carpets are all filthy, just for a kick-off, and there is enough junk in the garage for a trip to the local tip every day for a month.

I have also LibraryThinged the last few books remaining that needed doing - of mine, that is, there are plenty of Judy's still to do - and made a banananana cake. Not both at once.

Wednesday was a very busy day, with one set of visitors in (my line manager and the HR lady from work bearing a scary Official Form), one visit out (to Caro's, to see her current kittens - Aurora's current kittens, technically, I suppose - who are named after Judy and me, and a trip to the garden centre to buy a housewarming pressie in between the two. I paid for it on Thursday; I was so ill yesterday that I seriously considered phoning the hospital - but I will always try not to do that unless I'm practically dying. Having said which, when I went to bed last night I did wonder rather whether I'd be waking up again. But I suppose I was just over-tired; I've been pretty much okay today. For certain stated values of 'okay' which = 'crappy, but it could be worse'.

Anyway, the kittens were lovely, and I may or may not have made girlie squeeing noises. You be the judge. And also, someone sent me a surprise!Bodhisattva from my wishlist today, which is not the sort of thing that happens every day. Thank you v much, SG!

Somewhere in amongst all that we went out for a drive in the country and accidentally found Claydon Hall. That is, I knew it was there, I just wasn't entirely sure where 'there' was. One day, when I think I can do so without spending the next day wondering if I'm about to breathe my last, we must go and do the tourist thing there.

Which led me to find this: Parthenope's Owl Book, written by Florence Nightingale's sister, Lady Verney. I believe she is the Lady Verney after whom the Lady Verney High School in High Wycombe, popularly known as the Lazy Virgins' Home for Scrubbers, was named. That was the High School I didn't go to. Who knows, maybe I would've been better off if I had done. God knows Wycombe High School did me no favours.

(This has been much on my mind of late because of the A-level results coming out. Apparently Bs and Cs don't count at all any more - and I heard a Paralympic athlete on the radio this morning being quite miserable about his bronze medal - which makes me wonder, why even bother any more? Why not just have pass and fail grades and have done with it, since it seems to be going that way anyway? Mercifully - for all concerned - I have no children, and shall, god willing, never myself have to take another exam, so it's all moot.)

Did you know I have no A-levels and never went to University? Does it show very much? One day I will explain How Things Were in Them Thar Days, but I don't have the strength at the moment.

I've been ill for well over a year now, and it occurred to me to wonder today what things were like this time last year. Thanks to the miracle of the internet, I was able to find out. They were like this: super-tired, unable to eat properly, panicky and prone to insomnia. What a long way we have come. Wait, no - we have made practically no progress at all. Will you get on with it, please, Churchill? Just go ahead and bloody well fix me, already!

I mean, how hard can it be?!

Anonymous
  • FormerMember
    FormerMember

    Hi Hils,

    Sorry to read that one year on you still feel the same, and that Churchill remains a bunch of headless loons. It really is dreadful and you should catalogue the errors and write to the trust manager and tell them exactly how badly this affects you. If you are Failing this do you know any farmers who could dump a load of shit outside his/her door with a sign above it saying "An example of Churchill service".

    Hope you have a "nice" weekend,

    Tight lines

    Tim xxx

  • FormerMember
    FormerMember

    Dear Hilary, crap crap and more crap yet again for your rotten luck with the Churchill :(

    You should write a book, to while away the wearisome hours, and make lots of money from it and move to somewhere where the hospitals actually do their job.

    At least you had the kitties to make you smile, though I fear that doesn't go anywhere near to redressing the balance of miserable rubbishness.

    Hugs, futile though they may be, and more hugs.

    x x x

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • FormerMember
    FormerMember

    Thank you, everyone!

    I feel slightly guilty about whining, having woken up to news about Thalidomide - if ever people had a reason to complain, it was the ones affected there - and with all the amazing pictures coming out of the Paralympics. I still have all my limbs, at least (assuming my fingers don't fall off). I should be more positive, I suppose, and go out and do a parachute jump or something.

    Not really, I would rather die, but you know what I mean. Jumping out of an aeroplane has somehow become de rigeur as soon as you have a chronic illness.

    Poor old Churchill. Their treatment really isn't bad - I always say this, I might be being too nice, isn't it time they FIXED ME?! - but their admin both sucks and blows.

    Incidentally, all I had to do to find out about hospital volunteers was a simple Google - there's a page on DirectGov that deals with that very subject. I was thinking more along the lines of what used, in America (maybe still is) to be called Candystripers, which I don't think has an equivalent here any more, but volunteering is clearly still alive and well.

    The Churchill does also have a Friends Cafe. However, the only time I ever had a sandwich from there, I got food poisoning!

    xx

  • FormerMember
    FormerMember

    Hi Hils,

    First just a quickie to Joycee re British Gas: seconded! When I switched suppliers in total disgust I was bombarded with phone calls from BG offering every imaginable inducement. Why the heck weren't they that helpful before instead of unreasonably hiking up my direct debits virtually every 6 months? And why do they outsource their appointment-making for heating checkups to an Indian company that employs people with poor English? And, and, and ...

    Have they privatised the Churchill Hils or is this still the creaky old NHS? There were volunteers handing out tea & sandwiches on the chemo unit at Heartlands, and it tasted like tea to, unlike on Ward 4 where i tasted like washing up water, not that I've ever tasted that but it looked similar.

    No, I didn't know you have no fancy quals, you have fooled me into believing you are an educated lady. Oh, you are. No fooling then.

    Being ill for a year+ is really crap and you should ask for your money back. I mean what do we pay our taxes & N.I. for then? To be guinea-pigs?

    I'll leave now before I get aeriated. See you soon.

    Love & hugs,

    Twirly xxx

      

  • FormerMember
    FormerMember

    As I said earlier, it's a ' hugs all round ' day today ......

    Joycee xxx