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.

Whose Life Is it Anyway?

I said in an earlier blog, and probably countless times in person over the last 2 years (I was diagnosed 2 years ago last week. What a strange anniversary to recognise!) that I viewed a diagnosis of incurable cancer as a war on two fronts; the physical and the mental. Both demand very different approaches and both require an acknowledgment of what is in my control and what is not.

Although I do not like it and still to this day struggle with facing up to it, I have become pretty adept at accepting the out-of-my-control facets of myeloma. (that it is there; that it is not going away; the drugs; the imposed life-limitations…to name but a few)

In my control is attitude, fitness and making the most of every opportunity that comes my way. Acknowledging that some days are good and some not so. That this life is what it is and a rhythm must be found, where ups and downs ultimately balance off against each other to permit a steady state of day-to-day living.

The steady state, where days just flow into one another, are anathema to my historical drive for pushing boundaries. Steady is not my natural state. (dull!) But as things stand today, it’s what delivers a calm in defiance of the chaotic internal battle that I am not ashamed to say smoulders in the recesses.

Why am I reflecting on this now?

Today brought to the fore yet another out-of-my-control factor and has churned my qi into a white water rapid.

I never go OTT crazy when I get good news because I know days like today will happen.

So, in case you were not aware, I am on oral chemo permanently; 3 weeks on and I get 1 week off

There is much evidence to show that this is going some way to keeping the paraproteins in check post transplant and has led to the recent drops in number.

I was told today that unless things change on a bureaucratic level, that I may only have access to this for another 6 months; then due to cost and contractual obligation, it will not be extended.

I am rational and (most of the time) reasonable. I see that everything has a price and that there simply is not enough money in the system to cater for us all. I am the first person to rail at the injustice of 1 in 2 people being exposed to cancer in their lifetime and see that with that, comes financial burden on us all as a society.

So I’m going to sound a little petulant here because I know I am very lucky to have had access to the medication I am on. But if it is working and literally, LIFE is on the chopping board, surely there is a way to overcome this impasse?

I do not like it, but I accept the illness and all that comes with it. And I am grateful as hell for the support and medication I have had to date. I know that in other countries I might not even be here right now. But due to process and economy, someone somewhere has Pete junior and his 2 best mates in a vice and can choose to turn the handle either left or right as they see fit.

And I can do fuck all about it. I can do nothing to influence the longevity of my own life.

I’m not stuffing my face full of cake and burgers every day. That is my choice.

I am not smoking 50 a day and drinking a litre of spirit every night. That is my choice.

But it all counts for nothing if the medication is cut off because of a policy decision.

I want to tear down walls and shout every expletive under the sun.

But I can’t and why bother anyway?

The anchors I set from which I base my norm are only as good as the ground I plant them in. Right now this is evidence again of how my house was picked up 2 years ago from its stone foundation and plonked right onto a bed of sand.

It’s another uncertainty. Another question mark. Yet another hurdle to overcome.

IT IS SO TIRING!

The really sad and sobering feature of it all, is that right now, this same story is being lived out by thousands the world over. Even worse, there are people who never even had access to what I have had.

I still have a choice. I still have options.

I just have to face up again, to a trying scenario and find a way to overcome it.

So I’ll wake up tomorrow and ask myself the 2 core questions that have served me well so far.

“Why not me?”

“What is in my control?”



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2 Comments

  1. Dave Richardson 26th March 2019

    Pete,
    Once more your word craft is so good and easy to read and follow. Your temperament comes over with every word you put down.
    The courage that you are showing in dealing with your situation never fails to amaze San and myself, please keep this mentality going, it’s powerful.

  2. Glyn and Linda 26th March 2019

    Dave says it for Linda and I your inner strength is quite extraordinary. We can understand the frustration. One wall is beaten down and another is raised. The funding fall back position rears it’s head acting as the escape clause for beaurocats. Numbers or people? Your blogs sort perpective for all. Glyn and Linda

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