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.

Me, cancer? You’re kidding right…

I genuinely believed that a doctor would come running into the ward, waving hands wildly and shouting for the nurse to stop the administration of the first shot of chemo. Seriously.

Life before myeloma. Me crossing the Ironman finishing line. Mission accomplished

The pinnacle

At 12:11 on the 20th June 2017 I said goodbye to my old life and hello to a very different new world of life with cancer.

I had been told the doctors suspected myeloma some 6 weeks prior to this date; had multiple CT scans, a bone and marrow biopsy and plenty of blood tests but up to the physical injection of the Velcade, there was in my head, still a chance that it was all a mistake.

No. It happened.

39 years old, Ironman finisher and as fit and healthy as I had ever been.

And yet although I do not welcome this turn of events I have to be so grateful that I found out I had it the way I did.

Had I not got pneumonia back in September 2016, I would not have had the x-rays and CT scans that subsequently picked up the lesions that were the markers of this disease. Pure fluke because up to the diagnosis, any symptoms I had were easily isolated and innocuous in their individuality. Achy back (too many deadlifts and squats), sore ribs (bench), low mood (life!) and a few infections. (again, these things happen)

The doctors were as surprised as I was because this is a disease that tends to hit over weight 60+ people and is more prevalent in the African Caribbean community. Kidney failure is often the point it’s identified which is a hell of a lot worse than where I start my journey from.

It was not on anybody’s radar. In fact when I got the call to go and speak to the doctor for a face to face, I was expecting some news to do with the aftermath of pneumonia. Even when he said “suspected myeloma” I had no idea what he meant. I had never heard of myeloma. Then the “C” bomb was thrown in for good measure and bang…

Lets just say the rest of the conversation went missing as a very thick fog descended on my brain. I just wanted to get out of that room pronto.

So lots of stuff then happened to take me to the 20th June and I cannot praise the NHS enough for the speed, professionalism and quality of support. This topic I am sure will fill a page or 2 at some point in future.

But for now what does life look like?

Life after myeloma diagnosis. Me hooked up to cables in the hospital. Did not see this coming

Not the pinnacle

Drugs. Lots of them. Every day. That’s out of my control and all I need to do is take them and deal with any side effects.

More importantly and I guess this will be the driver behind where I now decide to take my new life, is what am I doing as a person, how am I thinking, what can I do differently to take as many positives for this as possible?

I have in the past glibly thrown the question out there around “what I would do if I was given a year to live?” I am more than optimistic that I have many years left to enjoy life and that I will get this under control but to be told that you have an incurable disease does focus the mind acutely on what is important to you. We all know we’re not immortal but knowing that vs having the fact slammed into your forehead are 2 very different mental concepts to process.

There does feel like a clock is ticking. The pragmatist in me knows there has always been a clock ticking but now I am laser focussed on making the most of every day.

I have always been guilty of looking beyond what is in front of me, under appreciating today with a view to delivering some grand plan in the future. (short term sacrifice for long term gain) I still have big visions of what I intend to do with my time but I am much more engaged with enjoying each day as it comes. The drugs mean that I do not know how I’ll feel 1 day to the next so take the small wins.

This blog is not about revelations. Since passing onto the other side of fit and healthy I have not been struck with a vision of what exists beyond this mortal coil so cannot enlighten anyone on bright lights or alien silhouettes. What I intend to do is use this as a catalyst for living a better life than I did before. If Ironman was the pinnacle of my physical endeavours then I fully intend to take myself beyond that by some measure. That measure is still to be defined but I have no intention of simply striving to be back to where I was.

I appreciate my life. Immeasurably. My family and friends and what I have come to call my day to day are what I truly value, despite my historical predilection towards change, challenge and a complete disregard for stability. But a leopard cannot change his spots even under these circumstances so I plan to take on this new challenge my way.

What is in my control?

  • My attitude
  • The decisions I now take every day in making the most of my time
  • Identifying what really is valuable and committing my time to those endeavours

The end result will be me living a life with cancer being part of me but not defining me. Wallowing in this will not expedite a cure, or make me feel any better; quite the opposite and what a waste of life that would be.

As long as there are drugs and therapies to take, I will accept the side effects and stay strong through out. My life will be better because of this. If it took cancer to make me live a better more fulfilling existance then so be it.

I committed 9 months to achieving the unachievable Ironman dream.

Living well and taking a few drugs is going to be a cakewalk.

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10 Comments

  1. Jim and Sheila 20th July 2017

    Well constructed blog, and beneficial to all those who know you and wish to keep abreast of your progress through this period of time….

  2. Hazel 20th July 2017

    Peter….you have always been strong of mind and will and I have no doubt you will tackle this “extraordinary blip” with the dedication you have applied to other areas of your life. I also know you will make the most of the long life ahead of you. Much love and hugs.

  3. Louise 24th July 2017

    Thinking of you and Jenn and the boys. You are strong and even when there will be down days, your focus and determination will get you through it. This is just another chapter in your story, which had many many more chapters to write and live!

  4. Mitesh 24th July 2017

    We’re all with you pal .. positive mental attitude ..has always been your strongest attribute ..from as far back as I can remember from the good ole (maybe not always ) days @ gs..

    each day as it comes ..as you say look for the positives there will be good days/ not so good and there will Herculean days..

    let that focus and drive you forward and strengthen your physical and mental well being ..

    whatever it takes .. we are at your disposal.. whatever you need .. even if it’s just as a sound of

    Rooting for ya .. we got your back son ..

    Mitesh

  5. Carole 24th July 2017

    Pete,
    very well written, I admire your positivity! Keep fighting, enjoy your “new life” and keep writing as this will help others (even those who don’t have “C” to deal with every day).
    Big hugs,

  6. Finn Nesbitt 25th July 2017

    You made me cry you bugger. I’ve always been very proud to call you a friend Pete. The strength, determination and insight you’re showing here have and will always define you. You’re a rock mate. Let’s make plans and look forward positively. I know you’re going to beat this.

  7. Barry Carroll 28th May 2018

    Peter, we don’t know each other. I was very moved by the article on you in HuffPost. I registered with DKMS just now – had not heard of them. Wishing you success. If you post updates on Twitter (I hate FB) can you let me know your Twitter name thingy. God’s speed with you

  8. Isobel Rattray 26th November 2018

    Hi Peter

    I don’t know you either! I joined the DKMS register a year or so ago, I got a letter this morning and have just read it’s contents, telling my your story. It’s stories like yourself that prompted me to join this register, can’t wait for the day when I get a call telling me I am a match for someone on the register!
    My thoughts are with you and your wee family, you are an inspiration and I am sure you will face this with the same determination and more you showed Completing Ironman.
    It’s a privilege to make a donation today!
    God bless
    Belle

  9. Wayne Martens 15th December 2018

    Hi Peter, trust and hope you are very well! Just read a article about you in News24. I live in South Africa and although I didn’t finish reading the article I suddenly got a good feeling about this stem cell donation. I’m a” love life, live” enthusiast myself and if I can help others I will. How do I go about donating and making sure it gets to you? I don’t do Facebook. Keep doing what you are doing, you are a inspiration! Chat later! Best wishes, Wayne

  10. Allison Edwards 16th June 2019

    How do I go about seeing if I can help lovely with being a doner if I may h I would love to help you see your boys grow up my h love Allison xx

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