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.

Lockdown

This morning is the first time in a while that I have felt the inclination to write something.

For a couple of reasons.

Main one is that I have had nothing of interest worth committing to paper and there is zero value in wasting your time and mine just saying stuff for the sake of it. (A bit like this paragraph. And this bracketed statement too)

And the second is that I have literally not had the mental focus to try and map out what little has been going on.

It was 3 years ago this week that I was formally diagnosed; which hails 2020 as the half way point of the 7 year prognosis. Much has changed in my immediate case and the broader world of science and medicine which challenges this assertion but nonetheless, that number has been a fixture in my thinking ever since I asked the question.

Both Max and Seb seem to get it, with Seb in particular asking me of late if I really am going to be around in 7 years. I won’t lie to them so my responses are very political in their structure; but for now, it seems to alleviate their concerns.

Honestly, I crave the days when having to wash the car and hoovering the living room were the sum total of my daily gripes!

I’m also recognising the impact of the chemo a lot more now with tiredness and a foggy head more prevalent. Nothing a coffee and a blast of air on the Peckforton Hills doesn’t clear, but it’s still a pain to have to regularly contend with.

And yesterday, to top it all off, I get a phone call from the hospital to say that due to Corona virus, I really should not go on public transport, go to events or large gatherings and should ideally, bathe in alcohol gel and wrap myself in antibacterial wipes for the foreseeable future.

I may as well be back on the isolation ward of the Christie such are the shackles now metaphorically committing me to the house.

Of course it makes total sense to be cautious. But having spent the last 3 years being told that I am at high risk of infection, to be sensible (I know, I should have been more cautious and sensible) not to travel, not to eat certain foods, not to swim or run, not to do this, that, the other… I know all this but if you are not able to do the things you not just enjoy, but need to do to live; then what is the point?

To frustrate matters further, I find ways to disagree with myself on a daily basis, being in constant dialogue with my inner sensible Pete vs frivolous Pete.

“Do I treat myself to that <INSERT WHATEVER NON-ESSENTIAL PURCHASE/ACTIVITY YOU CARE TO THINK OF>?”

My immediate response is no, because I don’t really need a new shirt or that extra pint, it’s a nice-to-have rather than a necessity.

Bills still need paying.

But then, if I really don’t have a retirement to look forward to, why the hell not? Why not enjoy being frivolous now because who wants to be the richest person in the graveyard?!

And so this cycle plays and replays itself every bloody day.

Look, this is just a rant. I know full well the point of being positive and taking the fight to cancer. I am whinging unnecessarily. But if you know me at all, I do not do well being told what to do and even less well at being told what I cannot do.

Damn me, I find ways to tell myself what not to do!

I am lucky that I am still here. I am lucky to have the family and friends that I have. I am lucky to have chemo that although challenging to live with, is available.

One hand giveth, the other hand taketh away.

So that’s it. As I said at the outset, not much at all to report on which I take as a positive. The search for that elusive stem cell donor continues with the next project being pulled together in the background; so watch this space.

But for now, I guess I best get into some online shopping for neat vodka, bulk-buy packs of Andrex and a mountain of dried and canned goods.

On the plus side, given my public transport ban, perhaps I need to pimp the Focus seeing as I am likely to be using it more. Would look great with a new leather interior, fat boy exhausts and a jumbo jet sized spoiler.

Shut up sensible Pete…

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5 Comments

  1. Tobi Onafeko 12th March 2020

    Keep Going Pete! Stay Strong

    Tobi (Met at your Close Brothers talk)

  2. Des and Sue yates 12th March 2020

    Pete I pray u get that one donor I really do -take care sue and des

  3. Brenda Shipton 12th March 2020

    Stay positive Pete, I, pray too God a donor will be found for you very soon. You are one amazing, brave young man. Stay strong, Brenda

  4. Dave 13th March 2020

    Hi Pete,
    Okay this may be you on a “rant” but as usual you put the rant into spectrum with your way with words, still with a hint of the comedian within and I salute you once more for your very close to 100% positive outlook.
    Who knows what will come from your grey matter while the isolation persists and you have time in abundance to come up with more of you plans to defeat the beast,
    Lots of thoughts and love from both of us
    San & Dave.

  5. Yaser Martini 16th March 2020

    keep your chin up, Pete.
    x

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