The waiting game

It’s been a week since my last post and still no news of surgery :(

I’ve been away for a few days to the lakes with my girly (which was fab) and i’m catching up with some work.

Anyway, just a few things to mention:

  1. The cabergoline seems to be taking hold. The first 24 hours after taking my 1/2 tablet are the worst in terms of a hangover head, low concentration, fuzzy thoughts and tiredness. However, days two and three are always much better. On day 4 i take the next 1/2 a tablet in the afternoon so normally feel rough early evening. All in all i feel the drug is helping. I was concerned with my symtoms after taking the drug but Nurse M at The Christie confirmed that my experience is really quite typical and that the Professor wants me to keep taking the pill :)
  2. Oh I have been in touch with Profs secretary Mrs M a few times (at The Christie) and she is chasing up a date for my surgery with Mr G. Albeit i understand that there are other people waiting for surgery this waiting around is driving me around the bend.  It wouldn’t be so bad if i’d at least been given an indication on timescale but it was left open in that it could be a week, two weeks or a month or two and all depends on the surgeons workload and his holiday plans. This is fair enough but from where im sitting no news just increases my anxiety and i cant think of anything else than getting this sucker out and then treating my acromegaly
  3. In terms of the acromegaly and its treatment, as i understand it the cabergoline should suppress the IGF 1, shrink the tumour and also suppress the prolactin level. Read more in this article

That’s it for now. Take care and have a great week :)

7 Comments

  1. I can really empathize with you on the waiting game with Mr G….I was the same…. it was well worth the wait im glad he was my neurosurgeon.
    ..problem i had was profs secretary said shed sent referral off and she infact hadnt. iv got mr g s phone no if you want it. his secretary is fantastic. pm me on facebook if you want it… n will fill u in privately on my experience with christies v salford. take care x

  2. Thanks Andrea. I’ve just spoken to another lady in Mr G’s office who is going to follow things up for me. I also have Mr G’s email too, is it the done thing to contact him in this way? How long did you wait for surgery? Thanks, Richard

  3. Well i took matters into my own hands because christies where messing me about… salford wont mind….. and im afraid I had to wait 8 months…. I was desparate by then… It was christies that held me up not providing mr g with the information he needed… hope you get some answers soon richard. take care. Andrea

  4. I’m absolutely at the chasing stage :( Really cautious about becoming an issue for Salford and Mr G’s secretary though. So far i have left her 3 messages and sent her an email – all this over ten days. Surely she could just take a second to respond and say yes dicky we have your referral and we will get back to you. That would be fine at least i could move on etc. Currently i’m waiting for the postman each day and cant think of anything else. I started a small marketing business last year and i cant even focus on that. Ah well think i’ll just take myself off for a nice walk with the dog :) Have a great day Andrea :)

    • Yipeeee just heard from the surgeons secretary to say that she had received a copy of my initial referral (i’m saying nothing ;) and that Mr G will be reviewing my notes after his clinic today. She was really nice and accepted my apology for hounding her :) Apparently, pituitary patients tend to get seen quickly so fingers crossed!

  5. Hi Richard,

    Realistically, from my experience, from the time of me “giving the nod” for surgery, if my memory serves me correctly it’s probably in the timescale of around two months or so.

    (I can hear you now “TWO MONTHS???!!!) It passes really really quickly. Take the time to get a pair of pyjamas, and stitch up the willie-flap, get one of those “helping hands” (litter picker) things to pick things up off the floor as you won’t want to bend down too much straight after the op, and get a real stash of reading material. “TWO MONTHS THOUGH?” It takes more than two months to find a parking spot anyhow, so really you’re pretty much there.

    1) You get an appointment to see Mr G.
    2) The you get an appointment for a pre-op (or whatever they call it) – where they take your BP, ask for your funniest joke, and get you to do an impersonation of a topical TV character etc.
    (I’m not sure if I’ve got the two above the wrong way around). Thinking about it now, I think I had to have the second appointment because the anaethatist wasn’t available.
    4) I had another MRI scan at Hope too (I can’t remember now if it was at the same time as the two appointments or not).
    5) You have your actual operation. Whoohoo!!

    I was eager to to get the op done too, but it’s worth bearing in mind that it’s worth the wait and for Mr G to have his chosen team around him for the op itself. He’s an absolutely lovely chap. He’s got really slender fingers (compared to ours of course) and the first few minutes in his company really gives you assurance that you really are in the best of hands. You are too.

    Don’t forget to mention the reference to red socks…

    Trys