ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, 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.

3rd time lucky

So the last regime of chemo wasn’t a total failure like the first, but it also wasn’t the roaring success we had all hoped for.

After round 3 of 4, the paraprotein number was stuck on 32 which effectively meant the drugs had stopped working.

No-one seems to know why this is, but the decision was taken today not to bother with round 4 and explore other avenues.

Other avenues being a 3rd crack at another chemotherapy regime.

Unfortunately, the proteins swimming around at 32 do not permit consideration for the stem cell transplant. I should be grateful because I know that will be a bitch of a procedure, but it would have meant the second half of 2018 could have been salvaged for more pleasant activities.

As it stands, I am lined up for 4 more months of chemo (starting next week) and then, if it works, consideration for the stem cell procedure. Given that it takes up to 6 months to recover from that, next year is going to look much like 2017; but hopefully with more hair because these drugs do not necessarily lead to slap head-itis.

On that topic, I am seeing a bit of activity both on my dome and my top lip. Suspiciously blond so watch this space for a new look if that continues!

Clutching for any sign of a positive, I won’t need to spend as much time in hospital this round (subject to infections) because all of the chemotherapy is administered as pills. No more 24 hour sessions hooked up to a drip. Also means I’ll be at home for Christmas and New Year albeit on meds, so not all bad news.

How do I feel about all this?

Pretty flat. Not happy, not down, not angry. Nothing really.

At every turn we have had to face curve ball after curve ball. Nothing has gone to plan so none of this is surprising. I don’t recall the moment when accepting such damning news about life became so normal, but I guess it is testament to us all as human beings that our minds can adjust to such seismic events and allow us to continue to cope and function. The alternative, I can only imagine, would be inner turmoil and negativity.

So thats 2018 sorted. (until things change again)

That just leaves the back update.

I had the operation last Friday. 4 vertebrae stuffed with cement; in and out in 48 hours. Amazing procedure. I’m still a bit achy but 1 week on the back is feeling much better. The only scarring I’ll carry post the op relates to the mental terror of waking up with a tube protruding from Pete junior and then having it removed.

Bloody hell, that takes your breath away.

Enough said because the other memory I’d rather not have (I might ask for a morphine and diazepam cocktail because I know you can lose weeks of memories on that stuff) is of the old bloke who was  in the cubicle next to mine wheeling his commode through the curtain and into my space to do a crap! I couldn’t move to deal with the encroachment because Pete juniors appendage meant I was stuck on the bed, plus my back was in bits. Cue a frantic search for the nurse alarm button, but they arrived all too late as the old guy did the unspeakable.

At least I was only in for 1 night.

I do not like hospitals. Full of sickly people who seem to leave their decorum by the no smoking signs at the entrance.

So a further 10 months in and out of them should make my 40th year one to remember.

40.

F***!

 

 

 

 

 

 

 

 

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3 Comments

  1. Seamus Maloney 24th November 2017

    Pete, I read this thinking how positive you are going through this treatment, you’re an inspiration really.

    Pleased that the current outcome means you’re home for Christmas, and let’s hope 2018 gets better for you then 2017.

    I laughed hard at the hospital neighbour story, the sort of thing that happens only on stag weekends.

    Keep going strong and hugs to Jenny and kids.

    Seamus

  2. Zihni Acar Yazıcı 24th November 2017

    Going through so much on the one hand and coping so well on the other. Amazing endurance. You had successfully completed one challenge before the diagnosis, which, hopefully, will be followed up by another enjoyable one after this lengthy interruption. You are articulating what you are going through so well that we get to live the process, too. I look forward to hearing progressively better progress.

  3. SHE & JIM 24th November 2017

    Hi Pete,
    Yet another informative and, at times, humorous update since your back operation last week and consultant update yesterday.
    Clearly not all good news but a positive mindset to ensure you get through this.
    It’s going to be a ‘best-seller’ when the autobiography comes out..!!
    Love and best wishes,
    The Smarties

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