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.

let it go

More often than not, I suspect we know what is right and the right thing to do…

But we don’t do it.

I for example, know that my kids will react best to home schooling if I sit patiently with them, offering encouraging words of support. Yet there are days when I simply choose not to do so and just about stop myself from dropping the f-bomb when they fail to identify a square from a circle despite explaining the difference at least 64 times.

I also know that if I respond to Jenn’s (occasionally / usually) reasonable requests to do something, in a certain tone of voice (or don’t back her up to the expected standard in the disciplining of the kids) a wrath seldom seen outside the confines of the Old Testament will be unleashed upon my person.

I know this tongue-lashing is milliseconds away from being delivered before the words leave my lips.

But I do it anyway.

Note here, that I take absolute ownership of these situations arising. There is no “I couldn’t help it” of an excuse to call upon.

(Plus I quite like a good argument)

Because there is one thing knowing what is the right course of action to take and quite another entirely in executing it. 

And to further complicate this situation; what do you do, when you know what you want to / should do, but you are not able to because of factors outside your control?

(I exclude my kids from this analysis. They, who prefer staring at the ceiling and simultaneously breaking every pencil within arms reach as we sit on a class Zoom, whilst I bang my head against the wall in angst. Their ability to ignore instruction indicates that they are clearly operating to a set of rules beyond not only my influence, but also beyond the norms of civilised society)

Which brings me to the crux of this rambling.

I’ve spoken countless times about knowing that we can only influence certain factors and events; that our sphere of control only extends so far.

And also that we have to be aware of, but let go of, those factors outside our direct line of influence. If we try to effect everything; frustration, failure and wasted energy are our likely bedfellows as we settle down to sleep each night.

Yet even knowing this;

acknowledging this;

believeing this to my core…

my head swims daily with the regrets and frustrations of past decisions that I cannot change.

I am of late fixated on the uncontrollables, despite knowing full well that beyond learning lessons for future decisions, there is no point.

What has brought out this cycle of introspection?

Well, perhaps it is that I underestimated the depth and dynamism of challenge that I would face up to when first diagnosed.

I was never worried about the physical elements of the process. Chemo, weight loss, time in hospital. Although brutal at times, I always believed there would be a respite, an end to that. That I could reverse the side effects and get well again.

I was not concerned about the mental toil either. Again, I could control that to a certain extent and find ways to get through the dark times by applying my own techniques and methods to see myself into the next day. (To be clear, I am speaking from my own perspective here and am in no way making light of the struggles that other people face)

But I naively thought that if I could just get a grip on this world of restriction, medicine and mortality, I could settle into the new norm and just carry on until such time as the inevitable happened.

And although I did find a stability…

I never accepted it.

I never forgave who or what ever it was, for taking me away from my life and forcing me into a world without the freedoms I took for granted. A world where I was, on a good day, gratefully reliant on others to help me. And on the not so good days, icily resentful of having to give my time to being in situations and environments I had no desire to be a part of.

Recently, relentless waves of frustration permeate my day.

It’s not depression or mental fragility.

It’s something else I can’t adequately put my finger on.

It’s the feeling you get when you can’t quite grab the one item you actually need from the top shelf.

(I do not mean that sort of top shelf… I always found a way to get there)

Life, freedom, is just beyond reach and whatever I do, I cannot escape the restrictions that have been unavoidably imposed.

Yes, I know I said I found ways to navigate the monthly medical interventions; the daily chemotherapy, (that I know is keeping one problem at bay whilst likely creating others which will crop up further down the line) career limitations and the extra cost of insurances just to go to the shop. But even beyond Covid travel limitations, the leash of having to come back to the north west for check ups and drugs, curtails any dreams I may have of committing my time to the things I really want to do.

I won’t bore you by ranting on, save to say it feels like I go to bed and wake up shackled to where I was yesterday; with so many additional hoops to jump through just to get to what, pre-myeloma, I used to see as the start line.

I have not had the oft referenced epiphany of many cancer patients who learn acceptance and gratitude.

If anything, I am more expectant of life and petulant in the face of being told I can’t have those sweets.

I spend an unhealthy proportion of my time chewing over a recurring cycle of holding myself to account for the “I wish I had / hadn’t…” regrets, which now carry an urgency to rectify (where possible), given my speedily ticking body clock.

And I get ever more irritated at being unable to.

Days feel wasted rather than cherished; which I know is the wrong way to view life.

And which brings me full circle to my opening statements.

I may know what the right thing to do is.

But I choose not to.

Despite the frustration that ensues as a result.

The reality is actually quite simple.

Despite the self-imposed flow of resentment and a sense of unfulfillment, I do not want to stop striving for more and do not accept that this is it. I can’t allow myself to use the restrictions that really, we all face, as an excuse to not keep aiming higher.

I might well be happier and more content if I just acceded to the facts and restrictions of my situation. But that would feel like giving up.

And for now at least, I choose not to do that.

I do not have that in me.


What I do have in me are paraproteins which are a monthly, inconvenient reminder of why I am writing this.

Since September last year, they have been steadily rising.

6.5 / 6.3 / 6.4 / 7.5 / 7.3

7.3

They gnaw away at my resilience every month.

I know that I should do what the doctor says and not dwell upon them. And again, I could let them go. But being the statto that I am, I choose not to.

There is a cruel perversion at play.

The pp number contributes to the urgency I place on getting on with doing the things I want to. But conversely, they amplify the irritation when I cannot.

There’s a balance to be had somewhere in here!


Regarding future therapies, there is (thankfully) no commitment as to when the trigger is pulled on a change of treatment. Despite the steady rise in paraprotein, there is no cause for alarm.

I am still able to function and as long as that is the case, it takes precedence (for now at least) over the blood count numbers.

I am still on the list for the CAR-T trial that was due to go live in March this year, but Covid has pushed back the start to some time later in 2021.

It’s good to have it in the armoury of options; but fingers crossed I won’t need to jump into that arena in the short to medium term.

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2 Comments

  1. Suzanne Badder 20th February 2021

    Jeez, missed you dude! This year has been, well…yeh! Please keep that beautiful positive amazing attitude you have…You are amazing! I really don’t know what else to say, just keep going bud, love you xx

  2. jane 19th April 2021

    Just watched a very informative, and uplifting ( in respect of longevity) lecture by Chris Witty on Gresham college website about lymphoma leukaemia and myeloma.
    Improving all the time. I watched because I am interested in myeloma as my Dad had it 30 years ago and it is so good to see the progress that has been made and that it is now a chronic disease to live with

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