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.

I’m “special”

In life, many of us strive to be different; to stand out from our peers and make a mark on the world.

Right now, I’d happily blend in and be one of the crowd.

Of the 30 million globally registered stem cell donors, I found out yesterday that not one is a match for me. (bang goes my last chance of bagging a useful dual nationality with my long lost Mauritian cousin!)

To soften the blow, the doctor was extremely surprised that I had just turned 40 and complimented me on my youthful visage.

So for the man who likes to make his own choices, once again Myeloma has delivered another reality check and put me in my place.

Right now, there is only one option on the table. 3 more months of chemo to really nail the paraprotein then an autologous stem cell transplant.

This is not to say a donor won’t be found in future; as the list grows there is still a chance that a match can be found. But as time progresses, even my medically certified Benjamin Button-esque youthfulness will not permit a donor transplant as age works against you.

I refuse to wallow in this news and will continue to maintain a reasonably level emotional response to all of this. But forgive me this one outburst of frustration and disappointment.

Darn It, Golly Gosh, Aw Shucks…FOR FUCKS SAKE!!!!!

1 in 30 million.

You’ll get better odds on Shergar turning up at Epsom this year with Lord Lucan at the reins!

Rant over

So the journey continues. The doctors are still very pleased with my latest reaction to chemo and I am genuinely grateful to the world of science for furnishing me with a drug that has got me to a point where the paraprotein is as low as it has been for over a year. Lets not forget that 4 months ago, to get to 14 (and I find out next week if the number is any closer to single digits) was almost inconceivable with doctors not even entertaining the thought.

Yes its disappointing that the more effective transplant is not on the cards for now, and until a donor is found or a new treatment is pioneered, I just have to get on with the fact that I am likely to be on a constant cycle of chemo for the next X-amount of years. But with the steady progress in medicine, gene therapy being trialled and the weight of support behind finding a cure for Myeloma, the very least I can do is stay fit and focussed on being around long enough to take advantage of the hard work being ploughed into this field.

And subject to staying infection free, I can look forward to planning ahead at least 3 months, with my hair intact; so keep an eye out for some more last minute invites or impromptu visits around the country.

And just to throw it into the ether again, if anyone still fancies a lifetime of free booze on my tab (subject to being a match!), you can register for stem cell donation here:

https://www.dkms.org.uk/en/register-now

Some bright spark in football once said “its the hope that kills you.”

What a load of shit.

Its a lack of hope that will be the final nail in the proverbial; and as my birthday was testament to, there is too much good stuff to enjoy and take advantage of.

As a wise fish once said…

Just keep swimming

 

 

 

 

 

 

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4 Comments

  1. Heather Lannin 11th February 2018

    Good luck for you and all

  2. Dave 12th February 2018

    Hi Pete,
    Not the news you wanted to hear but with your positive attitude, it will happen so “keep swimming”
    We’ve put a couple of quid on Shergar as it happens and you know how careful San is with her money!
    Once again Mr McCleave we have read and enjoyed your latest scratchings and look forward to the next one with eager anticipation, you are indeed sir a classy writer.
    We have your beloved parents to put up with later this week when we meet up in York for another “gig” at The Barbican so we are looking forward to the banter with them and the rest of the “crew”
    Keep positive young fella, lots of love,
    San & Dave.

  3. JIM & SHEILA 12th February 2018

    Hi Pete,
    The statistics are incredible……
    Still, if the paraprotein levels continue their downward trend you are still moving in the right direction.
    Very best wishes.
    The Smarties

  4. Stephanie 21st March 2018

    …and who woudn’t want free booze for life?!

    Your story popped up on my Twitter timeline through DKMS UK, seems like people are signing up for swab packs daily.

    Never stop listening to Dory and Good Luck!

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