ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, 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.

Momentum

First things first…

This months paraprotein has (SURPRISINGLY) dropped a touch again…

2.7!!

Where 2018 was, to be frank, a real pain in the arse and not the most pleasant to endure, 2019 started with a media fuelled bang and the echo of that has endured through to March.

That the cancer is, at the moment, under control is such a huge bonus. I take nothing for granted and am more than mindful that the news will sadly, be of a rise at some point. But for now, as with previous months of late, I will raise a small glass of fizz in thanks to modern medicine, supportive family and friends and a positive and proactive approach to life.

The old adage of “if life gifts you lemons, make lemonade” seems apt for where I sit today.

My aim for 2019 was to hit 10’000 new donors and get some substantial, self-sustaining momentum behind the campaign.

Thanks to my son Max and his letter, I can say that in quarter 1, these aims have been achieved and then some. The wave continues to be ridden and in no small part down to his decision to do something about a situation he has no control over.

Jenn and I have tried to shield both the boys from the reality of our lot, but clearly underestimated his ability to listen and process the world he now inhabits. But what a response!

He decided to do something positive and as I have said to so many people recently, although I am so proud of him for doing this, I carry both an anger and sadness that he has to; that his childhood will be forever tainted.

But as both my boys have already shown, kids are way more resilient than we give them credit for.

So what does life look like right now?

I still struggle with the fatigue and mental challenges that come with the chemo and cloud that an incurable illness carries. But as each month passes, the norm of this new life takes the edge off the negativity that will always hang over me and my family.

And I am being exposed to so many new opportunities and people who ordinarily, I would most likely, not have had the chance to engage with. It is this diversity of opportunity that helps to keep the pessimism at bay.

People really care and in terms of self sustainability of the campaign, it feels like it has taken on a life of its own. It is being talked about, written about, filmed too! I am getting messages daily from people who are not only signing up as donors, but who are running their own drives and spreading the message.

That is real momentum and success. Scaling up is now the key so taking the campaign globally and politically is the natural next step.

And it must go beyond just blood cancer. That 1 in 2 people will be exposed to cancer in their lifetime is simply unacceptable. I have gone from feeling sad to bloody angry that in the last 2 years alone, I know of at least 9 of my friends who, in my age bracket alone, have faced the diagnosis of a cancer.

WHAT IS GOING ON??!!

My immediate battle is with myeloma but my goal is to support the broader dialogue around cancer. I am sure that in 50 years or so, it will become clear why the prevalence of cancer has grown. By getting to 100’000 Donors (and the rest) my aim is to assist in getting to that “why” a bit sooner; raising awareness of cancer across our society and contributing to progressing the conversation around this epidemic of an affliction.

Yes, it might be that we are better at diagnosing it and perhaps, it has always been as rife as we experience today. But I am not convinced that is the whole story.

We all have a choice and mine has always been to have a little self belief and a proactive approach to barriers faced and challenges set.

I hope my kids see this, as if I do not get to see them grow up (which btw I believe I will) I don’t want my legacy of memories to them, being of a moping grump who felt sorry for himself.

And if I can do something that adds true value in the world, which I think 10’000 Donors is doing and take it to the highest levels of society, then I will, if faced with my own mortality, be able to stand tall in the knowledge that I really did do all I could to better my lot and that of so many others in the world.

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4 Comments

  1. Brenda Shipton 12th March 2019

    Dear Pete, You have do so much too better your lot and much more besides, you are an inspiration in mind, body and deed. You and your family deserve so much. Our prayers Pete, are for a miracle if not a cure for one remarkable young man. (YOU). with Love. xx

  2. JAMES SMART 13th March 2019

    Hi Pete,
    Yet another inspirational post from you.
    love and best wishes.
    The Smarties

  3. Martin Gill 28th August 2019

    I have been receiving treatment for multiple Myeloma for 14 years including radiotherapy (twice), chemotherapy (5 times) and a stem cell transplant.
    I have found that Chris Woollams (Canceractive) to have been a great source of information and help and can thoroughly recommend his website and books.
    I would be happy to discuss with you further if of interest.

  4. Martin Gill 28th August 2019

    I have been receiving treatment for multiple Myeloma for 14 years including radiotherapy (twice), chemotherapy (5 times) and a stem cell transplant.
    I have found that Chris Woollams (Canceractive) to have been a great source of information and help and can thoroughly recommend his website and books.
    I would be happy to discuss with you further if of interest.

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