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.

Puppet on a string

A good friend of mine told me a few months back that his son, on the back of registering as a stem cell donor, had been called up as a match for a patient.

He was going to be the 7th match of the campaign.

Unfortunately, he found out last week that the patient in question had run out of time and passed away.

We can all deeply appreciate how brutal a story this is. We will never know of the person or family in question, but we can easily empathise with the pain, the torment and sense of injustice that they will be experiencing right now.

I hope to hell they were not aware, although I suspect they will have been told, that a match had been found.

Of course there was no cast iron guarantee of the transplant actually working. But to be in a position of match; to have hope and be so close to resolution of a kind, and yet that persons life was still taken?

How do you process that?

I do not reflect upon this through any sense of self-centred self-pitying narcissism; it is not a cry for attention. Far from it in fact. (contrary to perception, I hate being in the limelight)

But I can think of no other story I have heard in recent years that demonstrates more vividly, how life really is a fragile entity that on so many levels, is out of our control.

Even when we try to take control and stave off natures inevitability with a bit of clever science.


As part of my work, I ask my teams to identify the things in their control and to take responsibility for managing them. Then to recognise factors outside of their direct remit and be aware of them; consider how they may indirectly influence so as to avoid unpleasant surprises.

I still see this as reasonably sage advice in so many walks of life; but there is another level to our existence that is beyond our hegemony and understanding.

An imaginary clock keeps on ticking; perhaps mine and many in my position, a touch quicker than yours, but we all accept, normalise and carry on.

And it has to be accepted, otherwise we would all become very introspective, anxious and probably pretty miserable if all we did was dwell upon the frailty, the reality, of our existence.

It’s just there are days where this is precisely where I find my mind wandering to. My friends’ story above just reinforces that thought process.

As do the other extraneous factors that seem to have a hold of my every decision nowadays.

As a 41 year old man (although clearly 21 in spirit) I am unable to go on holiday without running it past my doctors.

If I do want to go, health cover, costs an absolute abomination.

I can’t direct my career without considering what I might lose from an insurance perspective. When you have an existing illness, you suddenly find yourself treated like a lepar;

nobody will touch you.

If I want to do something while I am unable to work, I have to ask permission from the insurance company.

The payment of the chemotherapy keeping me in remission and therefore my very future, is determined by business people who have never met me. My life is literally, in the hands of complete strangers.

The list of how I am not able to make decisions freely for myself anymore could go on. I hate being at the behest of others.

Simply put, I’ve become the hybrid incarnate of Oliver Twist (“Please Sir, can I have some more Sir?”) and Pinnochio.

Am I whinging, being ungrateful and childish?

Perhaps. Probably.

But this is reality.

In a presentation I wrote, I make reference to the ability we all possess in making a choice as to how we react to any given situation and how we are capable of normalising even the most stressful of life events.

But there is something about having your ability to self determine curtailed, that pushes (my) strength of self control to the edge.

My problem is not in my capability to coordinate the left and right. It’s in making sure I engage the puppeteers above me to pull the necessary strings.


One lesson amongst a raft of many that I’ve come to know about myself, is that rarely is it one thing that sends the mind wandering down the boulevard of irate ramblings. It’s the constant drip feed of small issues and frustrations that cumulate into waking up one day and just feeling thoroughly pissed off.

I have absolute sympathy for those closest to me because it can come across as unprompted and unwarranted.

I do recognise this, but sometimes, you just have to get it out on the table and unfortunately, family tend to be there to face off to a bad day.

And then the guilt follows because I realise that time is just not worth wasting on negative energy.

And then, having cleared the decks, the cycle invariably starts again!


So, what is the purpose of laying bare these individual-but-interlinked scenarios in public?

Well, I guess it might serve to help anyone else who might feel the same way to appreciate they are not alone.

Or maybe it is an indirect way of me trying to educate other people who are lucky enough not to be in my thought process, about what keeps the wheels turning and cogs whirring in the complex mind of Peter McCleave.

But I think the more honest reason, is that on a most base of levels, it sets out yet another layer of complexity to life; that it is no longer 100% in my hands. (was it ever?)

Where a norm had been found in recent months, it has become quite apparent to me that steady state will sadly never play a part for me again. If the myeloma doesn’t pull the rug from underfoot (remember last months near miss which next time won’t be?) a decision by a third party just might.

All out of my control, yet I am right in the cross hairs of the very same facets I am unable to influence.

Time is the most precious of commodities as the story in the first paragraph demonstrates. Not-news in the slightest, as we all know this, but do I really now turn my back on looking beyond the next week? month? year? and just focus on today?

And if so, do I now have the luxury of throwing caution to the wind and just letting loose on my decisions?

Be reckless, just live in the moment and deal with whatever consequences arise as they arise?

Could this approach really be any more/less fulfilling, stressful, consequential; than trying to cling onto whatever thread of direction I have left?

All sounds very dramatic and really,

it isn’t.

Everyone has these moments of introspection. In actual fact, everyone wakes up some mornings and just can’t be arsed right?

I believe for many, it’s called a mid life crisis.

Stupid car. Check

Dog. Check

All I am missing from the full house is a mistress and a tattoo.

So, watch this space.

If I rock up at school pick up next year with a newly Grecian 2000’d mop of dark hair, “NUFC” inked on my chest and an au-pair in the passenger seat of my new soft top red sports car, you’ll know which path I took and some of the reasons why!

But (in all seriousness) whatever decisions I take going forwards, I need to accept that strings will be pulled regardless of my protestations.

And if fate and the etherial have to be added to the equation of my external influences, I can take solace in knowing that even Pinnochio had his wish granted by someone else in the end.


…and that was supposed to be this months blog.

But I went to bed last night and just felt it was a bit of a kop out.

It was so easy last night to hide behind the frustration of being at the behest of others. But in reality, it left me feeling like I was cheating myself.

And it hit me at around 0200 this morning that I was using my situation as a shield behind which I was able to justify not growing a pair and facing up to making the tough decisions.

If I want something different from what is the norm, I have to sacrifice the safety nets and take a giant leap (nod to the moon landing!) into the unknown. I will never know how long remission will last but if I use that and a lack of insurance support as an excuse to simply coast then I have to accept this being “it.”

And “it” is alright. It really is

But deep down, I just feel like I have more to offer and many new paths to walk so when I am in my rocking chair at whatever ripe old age I make it to, I can say that I got the most of out life.

Risk vs Reward.

Only now-a-days, I get to play roulette with the high rollers.

or maybe I just need to grow up and settle down


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2 Comments

  1. Dave 28th July 2019

    Hi Pete,
    May I just say that once more I have just read an incredible piece of writing and again I applaud you for what you are doing.
    God bless you !!
    “Uncle Dave”

  2. Zihni Acar Yazici 30th July 2019

    Hi Pete,
    Your narrative of life events makes me question my attitude to life and the way I share it with others. The issue of puppets is partially linked to sponsoring, is my understanding right?
    It is much easier to say keep going in keeping up the good work but doing so in unforable circumstances is beyond my comprehension. But still, this is one of many things you are very good at, way above average. Keep going, we all are following you and behind you.

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