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.

Near Miss

So, on Monday this week I was going to talk about the latest results, as set out below on my depiction of an awesome red run in the Alps; aka my paraprotein tracker.

As you can see, not so good news.

The steady state of 2.7/2.8 had jumped significantly this time around to 6.

Bugger.


As I’m sure you can appreciate, I was finding it a bit of a tough task getting my thoughts down on paper.

Angry. Frustrated. Bit worried.

Of course I knew this day would come, but such had been the relative calm that had finally settled over life, I just hoped it wouldn’t come quite as soon as it did.

Literally 1 year after my autologous transplant.

Coupled with my fight to keep the funding of my chemo regime in place, it felt like the foundation of sand that so loosely supports my existence nowadays, was being swiftly washed away by the relentless tide of this god damn illness.

But, my mindset being of a scientific persuasion, I had to challenge it. For my own sanity.

This month the test had been run by another hospital; a variable in the process. So although it was perfectly viable that the cancer had awoken after an extended winter of chemo-induced hibernation, it was not unreasonable to challenge the result.

So I did and today, went back to Manchester to get retested.

In American Football this might be called a Hail Mary. Which more often than not, results in a failed attempt at rescuing the game as the clock ticks towards zero.

But when that pass comes off… well, that’s You Tube gold for a generation and heroes are born in an instant.

I can only speculate as to why one machine said 6 and another said 2.8. And you are well within your rights to accuse me of selecting the value I most want to see.

But apparently, there can be operational differences across machines and labs which occasionally lead to these statistical differences and I am assured that the lab at the Christie is correct. So I can rest easy again; for the time being at least.

Another month of stability is another month clear of having to hit yet another regime of chemo.

It means I still have bullets in the chamber and the longer I can stave off the need to fire them, the more time science has to come up with some more medicinal trickery to beat the disease.


As mentioned above, the other dynamic bubbling away in the background is the funding, or potential lack thereof, of the chemo that has been helping to keep the myeloma in a state of remission.

My doctor and I wrote a letter that was under consideration with the relevant parties.

Now I am not someone who believes in luck or fate. Things happen and occasionally moons align.

It just so happens that today, even a cynic like myself was left contemplating a higher power stepping in to lend a helping hand as the funding was given the green light to be extended beyond September for a further six months.

Good news

Maybe someone somewhere does want me to hang around a bit longer.

If it comes out in the wash that this is the case, let it be known that
you did not have to inflict cancer on my ass to make your point. 
Please stop doing this to people immediately. 
When the time comes, prepare yourself for a serious dressing 
down before I walk through those gates.


So where to go from here?

Today is a reminder not to get complacent. The sad fact remains that this is not going away, but I have been given an opportunity, post last years transplant, to apply myself and hopefully make a difference.

If money never sleeps then cancer can be considered an entity that will never die.

As I have said a thousand times, it does not care about your age, race, religion, gender or bank balance.

So I think about it this way.

In a world of division, cancer can be viewed as something to unify us all.

For once, we can come together, turn our collective backs on our differences and work together.

And as you’ll see next, the evidence is abundant to show that’s precisely what people are doing.

So close to the next milestone of 25k (in 9 months!) as the new target of 100’000 donors is reeled in.

As the great bard George Michael sang…

You gotta have faith!


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3 Comments

  1. JIM & SHEILA SMART 20th June 2019

    “PHEW” – sharp intake of breath and positive news on the cancer drug funding – shouldn’t have to be an issue, but there we are…..
    Good news Pete.
    Love from The Smarties

  2. Mike Day 20th June 2019

    Glad it’s good news Pete, hope it’s not set you back mentally. Love from us M

  3. David Jesson 23rd June 2019

    Keep challenging everything bud, take care

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