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

    Hi Hilary

    Hope things improve for you.

    Give me the John Radcliffe any time! I'm surprised my husband (who is the patient) and I haven't bumped into you yet, but then, how would we know!! I'm the doddery old bat trying to play the piano in the entrance every so often. My husband's the one whose consultant is incredibly good at his job but could do with a course in People Skills. I'll say no more.

    Actually I will .........

    How come you have to jump up and down to get help? There's all sorts of stuff out there & all kinds of nurses who do a valuable job, but you have to run around like Inspector Danish Woman with the Big Jumoer to find what can help. Specialist Nurse? Yep, they exist, but you have to find one. Trouble is the NHS is creaking at the seams, overstretched and underfunded or at least the money goes to paper-pushing, coffee-break- taking managers and HR idiots who don't know one end of a syringe from t'other and spend most of their day trying to justify their car parking space. The medical staff are doing their best. Just an observation - rant over.

    The nurses and Team at Sobell House are great, Hilary. Hope you get some help.

    Little Jen

  • FormerMember
    FormerMember

    Only just joined but reading your post has made me smile as I am equally crabby

  • Hi Hils I think everyone has said it what a crock of you know what.It always seems the patient has to do all the chasing trying to sort things out trying to find information and it's rotten feeling you have been forgotten and left to it.Finally they seem to be getting their act together and about time so all things crossed that you will continue to be the darling of the Churchill.GP needed a good bitching to and thank goodness you now have some decent medication.Having been well and truly let down perhaps now they will keep a better eye on you which is not much consultation and doesn't inspire confidence in them.So I hope from now on that things move forward more quickly and that chemo does its job and then they operate.Tesco do lovely Jim jams and so does Primark.Not really a fan of the wedding kaftan bit like grandmas curtains but like the idea as they hide a multitude of sins.The very best of luck for Monday and I too am off to kick things on your behalf love and hugs Cruton xxxx
  • FormerMember
    FormerMember

    Hi Hils, the very best of luck with your appointment with the nurses and also with Shaun the Sheep.

    Nice wedding dress for LM, but the colour doesn't really suit her; it will crash with her 7 grey hairs.

    Big gentle hugs,

    Odin xxx

  • FormerMember
    FormerMember

    Hi Hils,

    I'm so pleased your GP has stocked you up with luvverly drugz, let's hope they'll reduce/neutralise those pains pdq.

    So, chemo people on Monday, will they offer the same cocktail as before? (Perhaps, when you eventually start it, the nurse who can find a vein quickly & insert a cannula without causing mass hysteria will be on duty, they owe you that much at least). I wonder what this trial comprises - will you have to take an oath of silence, then be randomly injected/tableted/ placeboed? Facinating.

    Anyway I rather like the shape of the wedding dress, but the panels could be a little better co-ordinated and what on earth is the triangle on the diaphraghm for - to remind you to breathe?   

     All agog to read your report on the Macmillan session, so see you later I hope.

    Hove & lugs,

    xxx