What a difference a day makes

6 minute read time.

Seriously. Yesterday I couldn't get arrested - not that I was trying to get arrested, but the Churchill had gone all sullen and uncommunicative, painted its bedroom ceiling black, and was playing My Chemical Romance on an infinite repeating loop; today I've been beating them off with a stick.

It probably goes without saying that nobody got back to me on the chemo/surgery question on Monday; I wasn't really expecting them to, so I didn't worry too much. Besides, I was asleep all day, and I do mean all day, for some reason, so I wasn't worrying too much about anything. But when I hadn't heard from them by mid-afternoon on Tuesday, I started to get a bit irritated. They may have all the time in the world, but I bloody well don't! So I phoned the Macmillan oncology nurses and got their answerphone - you always do get their answerphone - saying they wouldn't be getting back to anyone till the next morning. Grrrr. So then I tried the number on Sean the Sweater God's letter heading and got ... someone, I don't know who, who said she'd ask the nurses. I said I'd tried that, and best of luck to her, but she clearly had a more direct line of communication - I suppose all she had to do was walk down the corridor and kick them - because one of them actually did phone me back shortly afterward.

It's going to be chemo, alas. I was all geared up for hospital; I had a whole stack of nice, easy to read books all ready, I'd ordered some pyjama bottoms from Tesco (class, class, nothing but class), I was in the midst of organising cards and pressies for all the birthdays that were going to happen while I was out of commission, and I was looking forward to making sexy Cesare's better acquaintance - oh, yes, and I was looking forward to having Mr Crab cut out of me, too - but all in vain. Alas again, and also: woe.

So I said meh, okay, or something along those lines. Quite honestly, given their track record to date, I suppose I should be grateful they're treating me at all. Besides, I had stomach pains from hell yesterday, and wasn't really up to coming over all heavy-handed like. Not that I ever do. And even if I did, what would be the point? It isn't actually anyone's fault, least of all the nurses'.

I did bitch a bit to my GP when I saw her yesterday morning. I'd made the appointment to discuss my medication - my prescriptions were due to be reviewed and I wanted to make damn sure I didn't lose my codeine lifeline and, while I was there, I got her to add Oramorph to my regular scrip. So I took the opportunity to tell her that I was ever-so-slightly, just a little less than pleased with the Churchill, and thought they'd seriously dropped the ball on my treatment. If they weren't going to do anything else in the meantime, they really should have done a monthly blood test to make sure that things hadn't gone wobbly. I mean, if I hadn't happened to have gone in for that emergency drain, when would they have found out there was a problem? At the surgical pre-op, I suppose, which would have left me with practically no warning at all. Still, that horse is way out of sight now, and here am I with this useless padlock in my hand, so what're you gonna do?

While I'm on the subject of people being useless, I got a letter from the jobcentre yesterday to tell me that my medical certificate's about to expire and I should get a new one if I don't want to lose my benefits (£60 a week, if you recall). Which, trust me, if it had've been, I would've done. But it isn't. The most recent one is dated 12 January and has a six-month duration, so I don't know where their heads are at - though I could make a pretty good guess.

Today, though - today I think I've been voted the hospital's Little Miss Popular while I wasn't looking. Proof positive, if any were needed, that they haven't found this blog. The day started out with a call from a Macmillan nurse. Not the ones from the oncology department; this is a whole different tribe of Macmillan nurses, who inhabit Sobell House at the Churchill and do I know not what. Well, no, that's not quite true: I do know one thing they do - at least, I know now. They have a clinic at my GP's surgery - my own GP, at her surgery ten minutes up the road from me - every Thursday.

I wish someone had thought to tell me this, oh, any time at all in the almost-a-year since I got sick.

Well, now I know. And they had a slot vacant for tomorrow afternoon, so I shall drift on over there and see what that is all about. It may be helpful. It may be rubbish. It may merely involve the distribution of pamphlets, and you know how I feel about bloody pamphlets.

Then I had another phone call, this one from Dr Nicum's secretary, asking if I could come to Shibani's chemo clinic next Monday. I said no, I wasn't sure, it was terribly inconvenient and I thought perhaps I'd rather go get a manicure instead. No, okay, I didn't really. And lastly I heard from a random nurse who wanted to discuss the clinical trial Shibani was talking about the other day (I think I'll just plead guilty and be done with it): she'd been reviewing my records - a feat in itself, as half the time the Churchill can't find them when they need them - and said it looked as though I'd be eligible for the trial. Which is nice (what happens if not?!), but, I think, that will need to be discussed and sorted out on Monday. Sorted out insofar as the Churchill is capable, that is.

I did wonder, while I was talking to my GP, whether I should ask to have my treatment transferred to the Horton, in Banbury. But. That would probably just lead to even more delays; and there's no guarantee that they'll be any more efficient than the Churchill.

On the bright side, at least I'm not paying to let anyone kill me.

(My line manager has just sent me a newspaper article about HIPEC treatment, which is rather lovely of her. It constantly astonishes me how wonderful my various colleagues, and former colleagues, are being. I'm sure I was never that nice to them! Anyway - HIPEC: I'd read about it before; someone on the Mac site had directed me to it, I'm afraid I can't remember who, and I did ask Shibani about it last week, but she didn't think my cancer was suitable for it. She may be right, but Shibani is the chemo guru. I'm going to ask about it again next time I see Sean and his sweater.)

And, completely unrelated to anything that has gone before, this "magical hippie wedding dress" came up on Regretsy today. They were taking the piss out of it. I don't know why. I'd wear it like a shot.

Magical Hippie Wedding Dress  Bust 36

But then, I am now in a permanent blissed-out Oramorph haze, and don't really give a damn about anything.

Which is probably just as well.

Anonymous
  • FormerMember
    FormerMember

    Hils, its a right carry on you having to chase up what is going to be done, after all you are the most important person involved in this charade! At long last you have DRUGZ! Yeah to that....although they should be giving you the ones to get rid of Mr Crab.

    DWP and Tax Office (in fact any guvmint institution) are incompetent, and don't know what they are doing from one day to the next.

    I don't know whether LM has got her dress yet, but that one has a medieval touch about it, and I think any woman would look gorgeous in it....and you don't need a figure like Twiggy's to be able to carry it off!

    best wishes for future treatment

    Louise xx

  • FormerMember
    FormerMember

    Dear Hilary

    I'm sorry you're having such a shit time but I love the way you write and I too would wear the hippy dress. I hope the oramorph is helping: we have pints of the stuff left over from 2009. Does it go off, do you suppose?

    hugs and a little bit of adulation too

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  • FormerMember
    FormerMember

    Hilary, you found me my wedding dress! Hoorah thank you oh and my mum's old curtains too by the look of it..

    I delighted to hear you are the darling of the Churchill scene today and they are bothering to phone you and actually do something. (I can never say those words without thinking of Dick Dastardly shouting 'Mutley, dooooo something'. actually, he also reminds me of the delicious Cesare.... which is a case of woe....

    I was looking forward to swooning by proxy with him.

    That is rubbish. I fact the whole thing is rubbish about having more chemo etc. I guess you could take your Janet and John with you to chemo on Monday, for I seem to remember it took a fair amount of time last time... plus one can never have too many Tesco pyjamas... Actually that is a lie. Give them to the cats to play on or something...

    hoorah for morphine hazes. I remember that bizarre experience of taking it for the first time and P asking me what it was like and me saying, well, I am in massive pain and can't sleep but I just don't give a fuck.... great stuff. As long as it doesn't zonk you out so much that we can't play wwf or stop you writing on here, cos, well, you know, ahem I sort of err like that....

    Big big hugs for crappyness (oh oh ... no poobag? is that a positive?)

    and big big hug for Monday and I will continue to kick things and swear on your behalf (I know, too kind...)

    Little My xxx

     

  • FormerMember
    FormerMember

    As a postscript to Little My's comment, my beloved, nonviolent, gentlest of gentlemen J while heavily into oramorph, woke me one night trying to unscrew my head... He said it was the morphine... He is a surprisingly convincing liar though when playing cards...

    I slept very lightly after that.

     

     

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  • FormerMember
    FormerMember

    Oh Hilary, deary, deary, deary me what a coffufal (is that a word known down south or a slang up here, it means what a mess), the whole shitty situation is!!!!!!!  You''ve been let down by professionals and nothing can make that right now and as you so eliquently put it the horse has bolted!  It makes me sooooooooooo angry at the shitty place you're in right now.  Sorry for being negative, STOP THAT RIGHT NOW JAN.

    Positives, good luck Monday and hope the chemo is sorted soon and does the trick, then they can get on and operate at quick speed.  Onwards and upwards my friend.  Oooh nice new PJ's, you deffo can never have too many of those and your all organised with books so may as well start reading them, preferably not when in the morphine haze 'cos who knows what fantasies would occur!!!!

    Take care and huge hugs

    Love Jan

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