ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I'm 42 years old, (was 39 when life went somewhat awry) with 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.

grapefruit juice

Is it healthy to take absolute responsibility for yourself?

The obvious answer should of course, be a resounding yes. Where people stop being accountable for their actions, chaos tends to follow.

I have always been adamant that I take absolute ownership of what I can in the management of my situation and where it is viable to do so, let go (or at least be mindful) of those facets of life outside my direct influence.

Nutrition, exercise, attitude, how and with whom I spend my time, are all in my control.

Drugs (legal), occasional tiredness, discomfort and time on the ward; all, for the most part, out of my control.

So when the paraprotein numbers don’t go the way I would like or even when they do (both eventualities which have transpired in the last 2 months as you’ll see below) I don’t get too down in the dumps or up on cloud 9 with my reactions.

Up to 7.2 in August then down to 6.5 in September… I have no idea…

I just try as best I can to maintain an even mental and emotional response.

But, as I have intimated previously, this approach does not stop me from appraising those decisions I made that may have influenced the chaotic world of my paraprotein number.

Which brings me to grapefruit juice.

And whether it is a likely candidate for the sharp rise in my paraprotein number in August.

But, before I explain my citrus-focussed pondering, it is worth taking a step to one side of this thinking to consider the impact of whether it is good to take responsibility for the (potential) ability to influence an illness, in my case my immune system, through personal actions.

To say you are in control and able to let go of the frustrations that life all too often throws all of our ways makes a great soundbite.

And I am not lying when I say that is what I aim to do.

But this approach comes at a cost; a level of stress and frustration that grows ever noisier and more apparent as the months pass.

And at the core of this sits a question that has, since diagnosis-day-1, been left irritatingly unanswered…

…Is this my fault?

The doctors say Myeloma, like many illnesses, is just bad luck.

But I’ll be honest with you; I just don’t buy that.

And here are 2 reasons why.

  1. Myeloma occurs because a genetic mutation arises which leads to dodgy immune cells being produced. Our cells are multiplying, reproducing and dying millions of times every day, throughout our bodies. Mutations occur all the time but in most instances, are recognised and remedied by the checks and balances that take place during these processes. That there are a select number of mutations which arise, that have been identified as leading to a disease called Myeloma, which occur against a backdrop of a gazillion cell reproductions and mutations, just goes against my understanding of betting odds. If it is just random bad luck, why do these specific mutations arise more often than others, leading to nearly 6000 new cases of Myeloma per year? I guess the same question could be levelled at any cancer.
  2. Human history has shown time and again, that in our drive to progress and grow as a species; (for which we have been hugely successful in fairness given our standing in natures food chain) as often as we do something incredible, (telecommunications, antibiotics, Tinder) we are equally as capable of being too clever, greedy and/or egotistical for our own good; putting selfish needs above what is the right thing to do and royally stuffing it up. (Misuse of atomic energy, Thalidomide, Tinder) I have zero evidence to back up the following belief, but I just suspect that in 50 or so years, some super-brain will have a eureka moment and say “By George! It was the crispy pancakes all along!” Or talcum powder, or pesticides or mobile phone waves or… you know where I’m coming from.

So if not conspiracy theory, what is my point?

Well, when taking responsibility for my ability to influence my diagnosis, through what I think are the right decisions to make, I can’t help but acknowledge the other side of the equation. Which says that if I do not eat the “right” food, do the “right” exercise or de-stress in the “right” way, I must be to some extent, contributing to the negative aspects of my wellbeing. And therefore, the control or negative proliferation of my cancer.

In my head, it is not possible to take ownership of the good and ignore the bad.

What complicates matters is that I have no scientific evidence that taking supplements, eating healthily or exercising, has any direct impact on Myeloma. It may make me feel better both physically and mentally.

That is it.

But the guilt experienced when I don’t do the “right” things is real. Which again, cannot be good for mental wellbeing.

Should I be meditating or actively committing to alternative therapies, because there are people out there who swear they were cured because of these things? If I rely on science alone, am I contributing to my own demise by not being more open minded?

The considerations are literally endless!

I act or do not act and according to my law of control, live or die by my decisions.

The thing is, taking ownership of myself and my decisions does give a sense of control which was taken away when I was told my diagnosis was terminal. And does therefore provides a sense of purpose which for all of us, is vital to giving us a reason to get up each day and do stuff.

I’ll apologise now because I’m confusing myself trying to explain this catch 22 situation; but hopefully, the grapefruit juice will clear up my muddled narrative.

As you will have seen above, last month PP numbers jumped significantly from 5.2 to 7.2. Then dropped today to 6.5.

The ONLY thing I can think I did differently last month was drinking grapefruit juice. The supermarket ran out of the usual breakfast tipple so we got a few litres of the man from Del Monte’s finest.

I have not touched a drop since last month and lo and behold, a drop in PP!

Totally unscientific to the point of comedy. But that is where your head goes when a controlling mindset is faced with a month of stressing about blood counts. (And there is another factor, stress, that often gets linked to immune illnesses!)

So grapefruit is out and I’ll find out next month if this experiment elicits any significant results.

And just incase the old butterfly effect is playing any part in this, please don’t deviate from your norms and stick to the old routine!


I wrote all that last night and am reviewing it with a much clearer brain this morning.

I think it makes sense and gives a modicum of insight into the rabbit hole that is very easily fallen into in the search for hope and influence.

On balance, for me at any rate, being proactive and open minded is the right approach. It comes with its pitfalls as most things in life do (didn’t Newton say that for every action there is an equal and opposite reaction?) but being passive and reactionary is just not for me.

This blog for example, has been a very cathartic way of getting stuff off my chest and keeping anyone who has so kindly taken an interest in my story up to date on things. As most of you know, I do not readily talk about emotions and the like because I am Man and from the North! But writing it down has allowed me to say what I want to say but in a format that gives me a buffer and a distance from the situation.

The blog is my bridge and I like it this way.

But it feels like now is a good time to wind it down for a while.

I don’t think this blog has much more value to add until such time as something significant happens.

It was only ever my intention to use this as a way to keep people updated.

I don’t want to abuse this privileged position of having your attention by allowing it to descend into a platform from which I parade the McCleave manifesto by just firing out my thoughts and opinions.

So for now, I want to say a MASSIVE THANKYOU to you all for caring, taking an interest and reading this very strange summary of nearly 3 years of my life.

I have totally loved learning to write a blog. I might even read it back one day to remind myself of what has happened.

But until something of interest crops up, I’ll say bye for now from blog-land and leave it here.

See you at school drop off, in the pub or on a Zoom call.

Laters…

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3 Comments

  1. jane Aylott 25th September 2020

    Thank you so much. It will be sad not to read your really well written blogs.
    Your post today resonated with me. Dad , from north east, had multiple myeloma . I have neuroendocrine tumours, both not known why they occur.
    I too have racked my brain as to why, chemicals in my Dads job at ICI Wilton? upbringing? Something I have done.
    I have come to the conclusion , no scientific basis, that we must have a genetic propensity to cancer. Having said this, it leads on to “what about my kids?”
    Thank you for all that you have written , I am sure it has helped not only your friends and family , but many, many people coping/living/dealing with (choose your own ) chronic illness/cancers.
    Thank you and positive vibes and thoughts are being sent your way.

  2. Maggie 26th September 2020

    Sending love and healing thoughts, as always xxx

  3. Zihni Acar Yazici 1st October 2020

    “I am Man and from the North! “, with way above average brains!

    I’d repeat that grapefruit experiment at least 3 times, measure pp levels, determine average plus minus standard deviation, just to be sure there is/not a message there!

    Discontinuation of the blog, which has been exceedingly well written under confusing circumstances, must serve a purpose that we are not aware of as yet.

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