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.

MyelOvid

5.4 (from 4.6)

It’s not that I don’t care about Covid-19.

I do.

I don’t need to consider the global impact or individual stories to appreciate the gravity of this pandemic.

I…we all know this.

But my reaction, my emotional investment, towards the changes in lifestyle are nowhere near what I might have expected of myself.

Despite lockdown, infection avoidance and home schooling, I have not felt anything close to the challenge of mind-set I perhaps would have expected.

I’ll try to explain why without sounding self-absorbed and cold.

I have said previously that when this all blows over and the world opens back up for business, I, like millions of people with all manner of issues and illnesses, will be thrust right back into the thick of dealing with our respective challenges.

The above statement may infer that those have fallen by the wayside as we all go crazy over a virus that is indiscriminately cruising its way around the block.

But they have not.

Pills are still being popped, personal bridges crossed, tests run and days crossed off the calendar in anticipation of the results.

Good days are enjoyed and those not so positive, endured; despite and not because, of Corona virus.

Night-time continues to deliver a period when the brain can let go and (most nights) enjoy a break from churning over the whys and wherefores of, in my case, an illness that (despite best efforts) always sits somewhere between the distant horizons or the forefront of thought.

But it is always there like an unwanted shadow; how long it casts often determining how well a day will play out.

I am very sure that everyone can empathise.

This pandemic has imposed a life-changing transformation way beyond our norms and more akin to a movie plot; bringing with it the accompanying stresses, worries, heartbreaks, joys, opportunities and any other emotions and reactions you can think of.

Through my own recent experiences, I have found that normalisation and acceptance are two fundamental adjustments required to successfully navigate a challenging situation such as this.

As long as a scenario is considered a novelty, I believe that not taking the necessary mental steps towards normalisation, acceptance and coping, will ultimately exacerbate and extend the stress and pressure aligned with said upheaval.

How we go about this and how long it may take is unique to us all.

Internal factors such as allowing ourselves to let go of the fight, our capacity for resilience and willingness to change all play a part.

For what it is worth, this is my opinion. I am not in any way conveying this as a scientific or psychological truth.

But I have spent a lot of time thinking and talking about my own reaction to the events of 2016 onwards and these are reoccurring observations I acknowledge as having helped me.

Which brings me full circle to the point I set out at the beginning.

I do care about this pandemic, but I feel like I have hit my capacity to engage emotionally with it.

I have not found myself suffering the panic, anger, frustration etc… that has seemingly washed over the world.

Possibly…probably, because I don’t think I have it in me to stir up any more inner angst and negativity.

Plus, if Covid-19 doesn’t get me, then something else is already lined up to have a pop.

For those people who have faced tragedy brought about because of this virus, of course I feel sadness, anger and frustration. And I look to the decision makers at the very top of the house to answer the questions demanded.

But given that the main event (in my case) is going nowhere, everything outside that diagnosis, I just accept.

Even the myeloma doesn’t stir up much reaction anymore.

This month the paraproteins have jumped by 0.8 (from 4.6 to 5.4) which is the largest increase recorded since the transplant nearly 2 years ago.

Reaction?

It is what it is.

On a literal level, of course I know it is not great news. This upward trend has been steady in its stubbornness for a number of months.

That it is more marked than other months is just a matter of record as far as I’m concerned. I am still able to function, which is the most important thing.

I reconciled myself to this happening at some point a long time ago and refuse to waste the days dwelling (too much) on what might be going on inside.

Bills still need paying, kids need feeding (and educating…God help them) and days need to be made as productive and enjoyable as they can.

All sounds very familiar right?

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1 Comment

  1. Sean william Winter 7th May 2020

    hi pete i have a condition called mgus that can turn into myeloma. do you ever undergo fish cytognetics. deletions like 17p translocation 14-20 etc ? you mentioned you had a transplant 17 months ago what kind was it. did you have any cytogenetic abnormalties in your bone marrow biopsy. apparently mgus patients cant donate stem cells. becuase it excludes me from the criteria.

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