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.

Mixed Emotions

“Let them see you and see you are unafraid. Where there is work to do, turn your hand to it first; the men will follow. Some of you have erected tents. Strike them at once. We will all sleep as I do, in the open. Keep your men busy. If there is no work, make it up, for when soldiers have time to talk, their talk turns to fear. Action, on the other hand, produces the appetite for more action.”

Leonidas, King of Sparta, speaks to the leaders of the allied Greek forces who joined “The 300 ” in defiance of the Persian invasion at the  Battle of Thermopylae 480BC.

  “Gates of Fire” by Steven Pressfield

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Last week was fantastic.

So much achieved. (I cannot thank the team at DKMS enough for their support and belief and Havas KX for welcoming me to present at their offices) I really am enjoying jumping feet first into my own project and work. Feels as I would imagine an entrepreneur might explain kicking off a new business.

Strategy, marketing, presenting, creative design, fund raising (modelling!!)… and an unwavering belief that it is a good idea that can be sucessful.

I have always wanted to start my own enterprise; such a shame that it’s tainted with the sour note of the underlying catalyst and purpose.

I have been throwing myself into this for weeks and finally it is happening. But I find myself every so often, feeling a bit daft for getting excited about a project whose existence came out of my own, untameable misfortune.

Mentally, I have tried to position myself as the project manager; the guy brought in to deliver against the plan for someone else. Which in the past I have been pretty good at! But inevitably something tugs at the truth that I endeavour to ignore? mask? accept? … (I’m not even sure what I’m aiming at) and just dampens my enthusiasm.

Only a little, and temporarily I might add,  but it’s a reality check I still dance an uncomfortable tango with regularly.

Like I’ve said previously, it’s the dark cloud hovering at the periphery of my consciousness 24/7, that I have become quite adept at marginalising.

So the excitment feels undeserved and unnecessary for a disheartening moment.

Then I slap myself back into the right frame of mind and assert my belief that regardless of the hand dealt, I still have every right to enjoy a success and the achievements that come with a bit of work and from the people around me.

And when you get opportunities that would previously have been unlikely to knock at my door (photo shoots, presenting my ideas to new audiences and contributing to a cause that will save and extend lives, to name but a few) then regardless of what the future may hold, I can say that I am finally doing something that is a truly valuable undertaking that will I believe, leave a legacy of hope for others.

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Today not only marks 1 week into the 10’000 Donors campaign. (thank you all for your unwavering support and commitment)

It also signifies the next stage of myeloma management as I start the maintenance regime of chemotherapy to keep the post transplant paraprotein levels at bay. Pill form that I can take at home which is a blessing, but drugs non the less which I’d much rather not be taking.

3 weeks on and 1 week off. But after a blissful 2 months off all heavy medication, it is a dispiriting return to the fight to keep the myeloma in check.

But moaning aside, I am so grateful that I am able to benefit from the medical marvels on offer today that only a few years ago, were not.

Feel that same fatigue again from previous regimes but a small price to pay. I’ll know soon enough the full extent of side effects.

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Plans continue to come to fruition and I am looking forward to doing many more presentations as well as engaging with any and all opportunities to promote the great work of DKMS, ACLT, Anthony Nolan and Myeloma UK.

I make no apology for becoming a social media whore but hope that it does not become too overbearing for all of you who have so patiently followed my journey so far. If it does, please feel free to let me know in no uncertain terms, to rein in my new found penchant for posting the shit out of stuff!

I might not have the energy to commit to endeavours as in previous years, but what drive I still have, I will not waste.

I am no historian but the lessons I take from what I have experienced to date, leave me quite clear that doing nothing, being passive, is simply not an option.

Do pick up a copy of “Gates of Fire” if you are in the market for a very, very good read.

If not for the writing craft and gripping story, it will tell you all you need to know about how my mind is set.

 

 

 

 

 

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1 Comment

  1. JIM & SHEILA 11th September 2018

    Hi Pete,
    Another interesting and comprehensive ‘blog’ – a great start to the 10,000 donors campaign..!!
    You can add another ‘donor’ to your campaign as one of the regular morning swimmers we meet (Dave Crosbie by name) has returned his DNA swabs to DKMS over the last few days and will be keeping the campaign in mind as and when suitable opportunities arise.
    Cheers for now.
    The Smarties

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