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.

road to nowhere

In my opinion, what makes life interesting is the uncertainty. Not knowing what lies ahead. That you have an infinite numbers of choices to make and paths to follow.

That it’s up to you to decide which one to take.

Sure, there are paths more and less well trodden, but it is on the shoulders of each of us to decide which route we take.

So with this in mind, I guess it’s no surprise that of late, life has been a bit more challenging for me.

It might explain why I am so driven to make 10000 donors a success because to an extent, I can decide what I do and how I go about doing it. 

I can create uncertainty in the face of a very clear and certain(ish) future. 

But with uncertainty come surprises. Which as we all know, can be both positive and negative.

I knew that I was coming out of remission from the autologous transplant of 21 months ago a few months back.

The signs I was able to ignore through my ignorance of blood cancer back in 2016 have been sadly recognisable of late.

from 4.4 to 4.6

This has been confirmed in recent blood tests where there is a marginal uptick in PP number, but the gradient is still not of concern just yet.

Certainly for the cyclists among the readership, you would not even break a sweat if this represented the Strava section of a bike route.

So no need to send the balloon up just yet, but it is clear that a change in therapy is unfortunately, a step closer than it was a few months back.

So for those of you who have kindly been asking if I’ve been alright recently and I may have come across as a bit less sprightly than maybe I usually might (I really did think I was hiding it rather well in truth) it is all good.

But for a few weeks over Christmas, which coincided with weeks 2 and 3 of the drug regime (the toughest) I felt like the evil alter ego of Superman (Superman III if you want a trip down memory lane)

FYI I am not suggesting that I am Superman

I felt rough and was angry but had nothing that I was specifically angry about. Which made me more annoyed at myself. (and everybody else…sorry about that)

The thing is, I was absolutely aware of my actions. I think I actually wanted to be angry which is horrible. I cannot use the excuse of losing total control of myself.

In the end I would take myself away from a situation before I let it all out because it just was not fair, especially on Jenn who to her credit, dealt with those weeks with understanding and sensitivity.

This diagnosis has been one hell of a rollercoaster so far and long may this continue. Bizarrely, I often find myself contemplating the plethora of positive things that have come from it.

The existing friendships that have been nurtured, the new friends made, the projects delivered and the doors that have been opened to me that ordinarily, would not have been.

99% of the time all is well and life can be lived.

But for those 1% moments, head space is simply overtaken by emotions that are not conducive to a happy life. (or therefore, a happy wife!)

Strange as this may sound for someone who took to writing a blog about his cancer, I do not do talking, emotions or any of that sensitive stuff.

I am from the North! I eat meat, watch sport and like to throw weights around a gym for fun!!

And yet when those dark clouds that hover on the horizon manifest and temporarily collect over my head, no amount of alpha posturing or bench pressing will clear it.

So although I might not get it out in the open, I am thankful that you are listening and care enough to ask. Putting up with whatever it is I do and say. Being considerate and in simple terms, just being there.

I am a creature of habit so change is a hard thing to elicit. But I am trying and as long as I have the support I clearly have, to quote my brother

“it’ll be reet.”


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1 Comment

  1. Daisy Darke 15th January 2020

    Pete, just read this and felt I should leave a few words here. Life is something we have to face on our own sometimes. I’ve come a long way in life, thick and thin, probably not many people have the same experience. My parents died in a shipwreck together when I was 21, I was bankrupt in 1994 when I was 32, came to the UK to join my husband in 1996 but divorced two years later. I remember I was on my own in a bed sit during new year eve in 97, no friends or family. I was mixing tears with my pot noodle (well I am Chinese!) but I thought at least I’ve got my Visa to stay and work and from here it’s onwards and upwards. I visualised what I want to achieve in the future- my job, a partner , family and home. Now I’m 58 and Iv got them all! It’s the tiny light at the end of the long, dark tunnel that keeps us going. My only saving grace back then was my positive thinking and stubbornness to survive. Like you I had my dark moments (many of them) but we are fighters and fighters stand up again while gathering comrades on the way up. You go Pete. You think positive. Believe in that day will come and you will make it in the end!

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