ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I'm 42 years old, (was 39 when life went somewhat awry) with no history of illness, Ironman finisher who has been diagnosed with myeloma. Did not see this coming. This blog summarises my journey from unexpected diagnosis through the treatment path. My aim is to use myeloma as a catalyst for living a better, more fulfilling life and documenting the changes I am making in all aspects of my family and work commitments.

“male domestic bovine animals that have been castrated and raised for beef”

Bullocks

Being a family blog I can’t use the expletives that naturally came to mind on yesterday news, but hopefully you get my drift without being too offended.

Where last week I was full of optimism on the news that the drugs appeared to be working, the consultant, having spoken to a colleague at the Christie in Manchester, changed tack yesterday and was less pleased with progress.

I guessed something was awry when I walked into the room and the nurse was in attendance for the meeting; I’ve noticed they usually double team news that is not so good.

And so the latest opinion is that the rate of paraprotein reduction is not as speedy as would be expected so despite the drop, its not lowering quickly enough. The Doc thought he could double up the dosage again but on review, it transpires that I am on the highest dose so sadly not an option.

What this means is a new treatment plan is going to be put in place which effectively escalates the volume and potency of chemo and will mean a 4 week stay in the Countess hospital as of Monday 21st August. It also means the dreaded Hickman line will need to be put in place which I was hoping to avoid as long as possible.

Typical that the illness I get is stubborn and won’t play nicely with the standard drugs of choice; always do it the hard way!

The nurse gave me a call this morning and filled me in on the next steps and her parting words were “make sure you enjoy this week.” Don’t need to read too deeply between the lines to understand how challenging the next 4 weeks are likely to be. And they expect a second round to be required too before the stem cell transplant can be initiated so I’m looking at a decent wedge of time away in the lead up to Christmas. (I’m hoping Jenn is sympathetic and sees the dog as credits for Christmas, birthday, anniversary and any other events I have probably forgotten for  a few years to come)

Say good bye to hair and hello chrome dome. A certain Robert Murray will see the dark humour in this as he was banging on about shaving hair last year in a bid to be more streamlined for races. I’ll be so smooth in 2 weeks you may as well rename me Flipper, so on the plus side when I do get back to competing, I’ll be well prepared for posting some quick times.

I don’t have too much more to say so I won’t fill space with mindless ramblings. I’ll just close this post with the below not-so-cryptic imagry  on what other choice language is currently circulating around my head.

4 ducks

Sake

 

 

 

 

 

 

 

 

 

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7 Comments

  1. JIM & SHE SMART 16th August 2017

    Hi Pete, we can only admire the way NHS has taken you under their wing to give you their premium support to solve your ‘short-term’ Myeloma problems and although, as outsiders, it sounds pretty full-on treatment these next few weeks we are confident it will move you on to the next recovery stage and something to look forward to. Anyway, it sounds as if you might have a new ‘athletic’ look coming up – think Duncan Goodhew…. Might catch on. Cheers for now and love to all…. Sheila & Jim

  2. Christine and Tim 16th August 2017

    You WILL get there in the end Pete! So sorry though that the next four weeks look as if they are going to be fairly gruelling! Keep thinking of the love there is within your family and with friends… and dream of time you can spend with Jen and the boys out on Crete as soon as you get this b—-y horrible phase in your life , out the way! We will be thinking of you! stay strong ! And never lose your sense of humour!! Love Christine and Tim xx

  3. Zihni Acar Yazıcı 17th August 2017

    Hi Pete, keep up the hope. Like good, challenging phases are also temporary. Are they going to give you new bone marrow at the expense of ridding of the present one that is giving problems? Hopefully the outcome of the process ahead of you will worth the hardship you have been going through.

  4. Glyn Bass 17th August 2017

    Glyn and Linda
    Your blogs are so upbeat. We have read them thanks to your Mum and Dad. Next four weeks are going to be tough but your fighting spirit will help to beat this. We are thinking of you all the time and we send you all our love and best wishes.

    • Pete 22nd August 2017 — Post author

      Cheers guys. It will be tough but the team here in Chester are superb and I’m in my own room so just got to ride it out. Hope all is well with you and the family.

  5. Cliff whitwell 18th August 2017

    Great to see you still have your sense of humour. Keep strong Peter.

    Thinking of you and Mum &Dad.

    • Pete 22nd August 2017 — Post author

      Cheers Cliff. The fun starts now! Just been hooked up to the good stuff so hope to see some improvements in my numbers pretty soon.

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