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fragile state

Updated: Oct 26, 2023

It was never going to last but I really had hoped it might last a bit longer than 17 months.

That said, I know that if it had held firm for 10 years I'd be asking for 11.

Paraproteins are slowly clawing their way back into my system, from 2.8 to 3.2 to 4.0 in 6 months. An unsavoury trend for any statto's who read this post.

I was also told that it would not be wise for me to run competitively again, as I was planning on registering for Ironman Wales 2020. I had kept this as one of my personal goals throughout this whole debacle of a situation and been desperate to go back and do it properly; as crossing the finish line in Tenby in 2016 was the last time I was, in my head at least, truly well.

I still muse over whether I would have been diagnosed as swiftly as I was had I not run that race.

Going back for round 2 and aiming to run down the red carpet again would have been a fitting two-fingers-up-to-cancer.

But, unfortunately, even though the lesions that kick-started the investigation into my diagnosis are under control, my skeleton is apparently like bone china; strong but prone to cracking.

So a double blow.

But a setback to be kept in perspective.

It was never envisaged that the autologous stem cell transplant would hold for 6 months let alone the 17 that it did, so I should be grateful that expectations were exceeded.

The upward trend will kick start the next stage of discussions around treatment and the options available to me.

And thankfully there are options.

Plus, I am feeling well and the rest of my body is in decent shape, with blood counts all as expected; apart from the gremlins currently lurking and fornicating like rabbits in the shadows of my bone marrow.


Now, it would be very easy to start rambling on about my hopes and the like in the face of this turn of events, but being quite honest, hope in relation to myself and the future is a sentiment I turned my back on a long time ago.

That is not to say I am emotionless and void of aspiration or optimism; but for me, the best way to live with and progress through an incurable diagnosis is to focus on the facts; to accept and work with them.

For example, I could hope for a cure; but to expend my energy on that particular dream would be wasteful of my time and psychologically draining. It is out of my control and were I to spend my days waiting for the news article that hailed a magic bullet to hit the front pages, I think I'd be a particularly unpleasant and frustrated person to be around.

I do not like any of this, but I have accepted my lot and the potential outcome. There are only a finite number of treatments and I accept that as fact. I look to future options, such as CAR-T immunotherapy which holds much promise. But I also know that when the time comes for that, it is my last chance saloon.

Please don't think I am saying all this to garner reaction and sympathy.

It is simply the state of play and I accept it.

This is my way of staying sane and being able to focus on what is in my control.

However, I balance the above with another sentiment on which I very much anchor my approach; belief.

I believe that I will be here to see my kids grow up. I believe that I will find my stem cell donor match.

It may sound like I am being pedantic. (I can hear Jenn sighing resignedly and rolling her eyes as she reads this bit)

But that marginal difference of where and how I choose to expend my mental energy is crucial. Letting go of hope; of me wanting something to happen. And nurturing belief; an inner conviction that it will; even when faced with a lack of evidence to support it; is what has allowed me to stay positive for the most part and focus my energy on doing something useful with my time.

The plan for 2020 was to take 10'000 Donors to the USA and raise $1m for my charities.

This planning and delivery continues regardless of what now looks like a more unstable year ahead. My brain is still intact so I just have to think of ways around a few more medically based obstacles.

It's not like I'm facing anything quite so complicated and convoluted as Brexit.


This news is not what I wanted to hear but I knew, as we all did, that I would have to face it at some point.

But now is not the time to throw in any towels.

I have an enviable platform on which I have built my life; with a unique and diverse circle of stellar people that I am lucky enough to call my family and friends.

As long as I have this rock solid base of support, I can confidently say with absolute certainty, that I will always have belief.

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