Don’t Woo Hoo in Tesco

‘Are you on your own?’ asked the Prof.  

‘Yes, this is the first clinic appointment Bernard has ever missed.’ I said, thinking do I need someone with me?

After B asking about my paraprotein level he missed being told the news. Although I don’t yet have my PP figure, my IGa which was 18 on 11 February is now 0.44!  WOO HOO.  Although I didn’t feel so much like woo hooing by the end of the conversation as I ended up a bit dazed and confused. 

I heard once that a good number of patients either do not remember or misinterpret the information supplied by their doctors.  I have never considered myself one of these, I mean I take a notebook to jot down pertinent points for goodness sake, however this is what I remember the Prof saying…

We met before when I graciously acquiesced over the steroids.

These are two medical students from Hong Kong, where I go to teach sometimes.  Do you mind if they sit in?

Can I call you Paula?  I feel old enough to be your father.

You’ve tolerated the medication well

This is your IGa (swivel of computer screen).

Do you have any brothers or sisters?

We will have put you on the international donor register.

You will see me from now on.

I propose two further cycles of Velcade and Doxorubicin but over four weeks instead of three so you will get an extra rest week and then a donor transplant.

WTF?  No, that was me not him and I didn’t actually say it out loud as such but it did surprise the sass out of me briefly, although I managed to ask if the students reported back on him when they got home.

What did you think would happen?

I’d have eight cycles of Velcade and if that worked we’d leave it alone. (Don’t trouble trouble as a friend says.)

In view of your age it would be wrong of me not to mention a donor transplant.

WTF? – again!

There is no point doing a second transplant with your own cells in view of the results of the first one.

You will/should have a donor stem cell transplant.

Ultimately though it is your decision.

I’ll see you in four weeks.

And although I did have my mocha and Eccles cake alone I got to enjoy the conversation of two elderly ladies at the next table – apparently one of their friends had paid £1,000 for a porcelain sink over part of which she now permanently drapped a tea towel so it didn’t get damaged and it was nearly handbags at dawn over who had the bigger house – and B arrived in time to take me for a late lunch.

Oh, and B decided he’d like to treat himself to a bag of fresh cookies from a little Tesco on the way back to the car.  They didn’t have what he wanted so as he was selecting I suggested he may want to go wild as we should be celebrating and woo hooed a little bit too loudly for the man further down the aisle who didn’t stop staring at me until I was past him.

 

 

 

13 responses to “Don’t Woo Hoo in Tesco

  1. at first I seen thsi and read it as no woo hoo in Texas,… I was like uh…. that what we do in texas is Woo Hoo and Yehaw…lol..

    thanks so much for visiting me… I haven’t been bloggin much lately… had a few things to get thru…. glad things are going well for you…. Who Hoo all you like… 😀

  2. WOO HOO and various other expletives of joy. (I’m jealous on behalf of Mike as his figures never dropped that much.) Really truly, madly deeply pleased for you B. and Bud and I wish I could be your donor, only I can’t as I’m B+ and if I remember correctly you said you were A so I know I’d only make you sicker and that’s no good. 😉

  3. Well I guess I’m confused. If your numbers have improved (which definitely deserves a “woo hoo”!) why is he suggesting a donor transplant? Those can be pretty tough. Any chance you can ask for a second opinion?

    I’m on the bone marrow transplant donor list and I’d sure be willing to take a little trip to England if I could help. But I’m B- so guess that wouldn’t work.

  4. Yep – I’m confused too. I gave a loud “woo hoo” for you over the figures and then it went downhill from there. WTF? I think the moral of the story is that B shouldn’t ever let you go alone again …. did the bathroom at least get finished off?

  5. Paula, I agree with Dianne. Get a second opinion. WTF, indeed…!

  6. Wow, love that .44 number. Way to go, P!!! Over here stateside, most docs are not pushing allos anymore unless the patient stops responding to chemos. Tim has been off chemo for coming up on 3 years and that was from only 4 cycles of Velcade and his transplant didn’t work AT ALL, so I don’t know why your doc is going there now. Actually, Tim’s doc was going there with him too but a second opinion doc told us, “no way” with him responding to
    velcade so well. He told us he has patients that go in and out of CR for YEARS with Velcade. It pops back up and they whack it down again. Tim’s doc has now pulled back from recommending allos just because the patient is young. He is seeing too well now how long folks can go with the new chemos. I do believe allos can cure MM in some cases. I’ve met and heard of folks MANY years out with nary a sign of MM. (over 15 years in a few cases). But as you know, the risk is high. If you ever decide to do it, I’m 0-neg, but I actually don’t think you have to be the same blood type. I’m pretty sure I’ve heard of folks whose blood type changed to the donor’s. It’s the HLA that has to match. I’d hook you up with some cells if ya need ’em. Just FYI, my cells would be a little loopy on valium ’cause I am a WHITE KNUCKLE flyer. 😉

  7. May I take “handbags at dawn” and use it as my own?

    I’m not at all sure what any of the numbers mean, but I do understand transplant. I’m O+, would that help?

  8. Shucks, I’m also a B+ so I cannot ‘B’ much help, I suppose…. but I have to think that Denise makes some very good points about the allo. I wonder sometimes if the docs ‘in charge’ just want to have their own little research projects and prove something instead of thinking about what is best for the patient… I would definitely seek a second opinion and for sure do some research on your own about the best path to take. Also read Lonnie Nessler’s blog about making medical decisions. Anyhow, intending from here that you are getting good information to make the right choices for you!

  9. PS — I would have replied to the question, “May I call you Paula, I feel old enough to be your father?” with “Sure, Dad!” or “And I will call you what? Is age the determining factor for formality?” Already I am not too happy with the new assignment.

  10. Hiya Paula,
    Well done on great results, and no wonder you’re confused with the whole transplant conversation! Very out of the blue! I would talk to someone about a second opionion….if only to give you peace of mind about the sort of direction to take.

    I thought the whole allo thing was less popular now, in the UK as well as the USA. Although obviously it is more common if you didn’t get the response first time. There are a couple of people on the Under 50 site that have been considering the same thing, so you might want to start a thread on there?

    Now why do I have the feeling you go to the Marsden like me? Does that mean it was Prof M???

    Good luck with it all!
    Debs x

  11. Not sure what this news warrants: half a woo hoo and half a WTF? So:
    WOO FOO!
    I THINK you got good news… but I don’t fancy a donor transplant if you don’t “need” one. Mind you, if there’s a really long waiting list you might as well be on it “just in case”…?

  12. WOO HOO !!! But no wonder your head was spinning not sure how much would have sunk in if it had been me x

  13. Pingback: Woo foo | Feresaknit's Blog

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