The Twilight Clinic

We went to a clinic appointment on Friday and here’s how it went – I know shame on me for only posting now on the Monday (well hopefully) but we’ve been having some internet connection problems. So much so B has had to disconnect the router twice (once he had established which was the router and which was the shredder) – not that big a deal you’re thinking but B’s usual IT involvement is ‘Paula it says blah, blah blah’ where blah, blah, blah is the whole message on the screen verbatim with no preamble like ‘I have a problem with the computer’ and where I am usually in either the bath or bed, half asleep in either case, and when I ask him to repeat it he says ‘It’s alright I pressed OK.’ So I arrived at the clinic, following a trip to phlebotomy since I’m minus my PICC line, to find about four other patients, two of whom were at the counter waiting for blood forms on their way out. B arrived shortly after (he drops me off and then parks the car) and being equally amazed at the lack of people said to one of the health care assistants ‘Where is everybody? Have you killed them off?’ which earned him a dig in the ribs off me and fortunately a smirk from the chap closest to us who was having a sit down while the printer was sorted. After getting wey-hayed, we went off for a coffee and got back to find no-one else other than staff in the clinic! I gave the little buzzer thing we’d been given to alert us to our turn a sharp look thinking it wasn’t working but it flashed back at me in a smug ‘I’m fine’ way and we sat down in anticipation of at least a solitary doc not having gone to lunch. One of the doctors I’d seen on the ward and once before at clinic stopped as he was passing and enquired how I’d been and then the Prof appeared to call us in. Now I feel at this point I need to refer us all back to the clinic appointment two months ago when I had seen the Prof last because after we entered the room I felt like I’d entered the Twilight Zone. Fortunately I’m not a fretter and generally go with the flow so hadn’t spent too much time dwelling on the prospect of a donor transplant – other than thinking after just a week in the Royal that I’d really, really miss Bud. Long story short (what do you mean too late for that?) I could still opt for a donor transplant if I wanted but with Velcade and Revlimid there are other options. With having no siblings to even check for a match there is a 5% to 10% mortality risk just from the transplant itself and it was a lot to put someone through. We heard the letter that was dictated to our GP (of which we will get a copy) and in this and also later the Prof described me as ‘well informed’. I so nearly said ‘Are you saying I’m a smart arse?’ and then thought better as I don’t really know him well enough. When I told my Auntie Ann this on Saturday she said ‘Mmmm, but you are.’ So it’s my choice of donor transplant or leave well enough alone for the time being (pending the subsequent discussion on cytogencis). You may have noticed that I’ve been using ‘I’ a lot, rather than my usual ‘we’ and this is because B has basically said that it is my decision. The Prof mirrored this and before I could ask Roo’s question ‘What would you do in my position?’ he beat me too it and said ‘but if it was my relative I would go for…’ donor transplant I assumed ‘Velcade/Revlimid as needed later.’ – do do do do, do do do do (that’s supposed to be the Twilight Zone tune) – which I felt was so different from the last time I saw him. Maybe it’s the IMF conference he’s been to in the interim that’s made a difference or my lack of brothers or sisters – you know I always wanted one when I was little not realising how handy they could be medically as well as for taking the blame. Prof did point out, and don’t we all know this is true, that if you asked ten myeloma specialists for their opinions they wouldn’t all agree. I asked about my liver function as the results on my discharge form were a bit out of whack but this typical following treatment and they’ll be tested next time. We go back in six weeks (despite the non usual receptionist trying to give me an appoint for six months – wouldn’t that be nice) and in the meantime, well next Tuesday to be exact, I get to have another bone marrow biopsy on which cytogenics will be run. The result of these will have an impact on the next course of action or even inaction. We’re ideally looking for a nonexistent plasma cell content and perfect chromosomes – I mean it’s not much to ask is it? I’ll even settle for that over a reliable internet connection and a pleasant mother in law!

7 responses to “The Twilight Clinic

  1. Well, you know what I think of allos (harumph!), so I will refrain from beating a dead horse (what a horrid saying, that is! But I couldn’t think of a better one).
    I wanted instead to tell you that B’s “Have you killed them off?” remark sent me into peals of laughter.
    Anyway, my fingers are double-crossed re the BMB…no plasma cells, no plasma cells, no pla…and so on! Hugs from Firenze!

  2. It really doesn’t sound too reassuring to be told that the experts wouldn’t agree on a course of treatment, when the next thing they say is “It’s your decision”. Just how are you supposed to make that decision, exactly? Toss a coin?

    B’s comment about killing off the patients made me inhale my tea – not a good look!! I should know better than to be drinking hot tea when reading your blog by now – safer for all in the vicinity!!

    Fingers crossed for the cyto-whats-its!!

  3. Hello Paula… You are a brave one.

    I pray you have this all behind you soon.


  4. Ugh…tough decisions ahead! We’ll just pray that the bone marrow biopsy looks so good there is no need for further discussion about transplant! Chin up!

  5. All right everyone, please join me in a Big Intention that the Bone Marrow Biopsy is going well for Paula and the news is good and this is for the highest and best good of all concerned, so be it and SO IT IS!!!! whoooooooo! (That last is to send it out to the Universe for action right now!)

  6. Happy biopsy, Paula! I am so glad you got some sense out of them. Hope you get your techy problems sorted too – it seems like everyone I know is having IT troubles right now!

  7. Hoping your cytogenics are all normal. Tim’s doc made us a little crazy, actually a LOT crazy, about an allo too. First, he strongly recommended it,
    then he said that maybe he should do a fully ablative allo because his auto failed and he started getting bummed about the relapses he was seeing with mini-allos. Then he pulled back from it all and admitted he did not know what he would do in our position. We were twisted in knots for a long time. Finally a 3rd opinion on the subject told us he would not do it if Tim was responding well to chemo(he was), so we put the whole deal on a back burner. Might be a good idea to let them do a search Paula. No sense making yourself crazy until you know if there is a match and you have the option in the first place.

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