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.

Relentless

At least a rollercoaster has an end

What has taken its toll in the last 72 hours is the simple truth that to delay the inevitable is all that can be expected in this fight. The nature of this battle is such, that a linear path to recovery does not and will never exist.

I was preparing to write a brief summary of the road to stem cell transplant. That they had harvested (sounds awful but is not that bad!) the cells and the date was fixed.

And it was all lined up as set out above…until Tuesday.

Once again my bloody stubbornness (literally!) overrode all best laid plans.

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My fear this time last year was of the finite number of treatments available in the fight against myeloma; but my hope was that it would be many years before I got through them and by the time I had, new drugs or procedures would be on the table.

To date I have exhausted 3 forms of chemotherapy. (I don’t know how many there are in total but its not an endless list)

That said, 6 weeks ago, I finally stopped taking the meds in preparation for the stem cell transplant taking place.

Perversely I was pleased about this!

Last week I spent 4 days to’ing and fro’ing from the Christie until they had extracted the required number of cells (I won’t go into too many of the details but the needle they used was akin to something a French cheese master would sample his latest creation with! But, as with all the prodding and poking around I’ve endured this last year, it is temporary and never as bad as anticipated. Plus I got to watch a load of movies that ordinarily I’d not get to see as Jenn would not like them!)

The 22nd May was set for the main event then Tuesday happened and yet another spanner was thrust into the machinations of my convoluted drive towards remission.

My paraprotein level had jumped to 18 and as such, they decided to halt proceedings with a view to more rounds of chemo to get it down again.

Expletives don’t even come close to explaining how frustrating that news was.

As I’m typing this, the only image that I have to explain how this feels is that of the boy who tried to stop the dike leaking by sticking his finger in the offending hole. Where one leak was stopped another would invariably spring. The ocean behind simply found another way.

It is just not easy.

I’m not wallowing in self pity; I am not the only person on this planet going through a challenging circumstance, but it just wears away at the layers of resilience.

Everyday I wake up with a feeling in my stomach; its like the shot of adrenalin you get before a race or an exam; but it just sits there, dull, pulsing away and does not shift because the cause is the simple fact that this disease will not go away.

And although I understand and accept the root cause, what deepens the ever present shadow is the real world impact. Maybe not growing old as the boys do; having to contemplate someone else stepping into my position as a husband and dad; Newcastle winning the Champions league and me not seeing it!

Over and over. Its enough to drive you bonkers.

But the release valve for me is I am letting much of this go. Slowly!

There are so many things I cannot influence and as such, it just a waste of energy and time trying to as it will not change the simple truth that I can’t rid myself of myeloma.

The doctors can plug the holes in the wall and I’ll continue to carry the patience required to sit there and stave off the tide.

But if any positives are to be taken from the current state:

  1. I get to keep my hair for a few more months (although Seb is gutted as Jonjo Shelvey is his favourite Newcastle player so he likes the streamlined look)
  2. I can commit to a few more socials heading into summer
  3. I can keep working on promoting the donor drives and grow the coverage which has been phenomenal so far.

Point 3 is of course the holy grail of this affair and I continue to be blown away by the interest people are taking and how wide it has been publicised; all down to you guys, my awesome family and friends.

Someone out there is my match.

I believe that.

We just have to find them!

I’m working on ideas to widen the search, and if I have to, I’ll be damned if insurance companies are unwilling to cover me and go travelling myself anyway taking swabs.

Bunbury. Leeds. Chester. Warrington. London. USA. Asia…

Anywhere I can target the search on my own heritage and diversify the genetic pool of registrants.

That person is out there.

And I’ll tell you now that if they are found, no one will be more grateful than me; not only to that person, but to everyone who follows this story and has done so much to raise awareness.

Regardless of how this pans out, no-one can say we have not tried.

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A sample of your bloody excellent support

(please check out Scotts/Claire Burrows’ Just Giving page if only to appreciate what this guys is doing. As a young lad this is a massive sacrifice for him too. He really is a credit to his family)

https://www.justgiving.com/fundraising/claire-burrows7

https://www.bunburyfunrun.co.uk

https://www.yorkshireeveningpost.co.uk/news/leeds-rhinos-fans-can-play-a-lifesaving-role-for-one-of-their-own-1-9148543

https://www.express.co.uk/scotland/939842/Indy-Car-champion-s-wife-asks-her-followers-to-help-save-friend-s-life

https://www.whitbygazette.co.uk/news/help-save-pete-could-you-help-cancer-battling-dad-of-two-s-search-for-a-donor-1-9100401

https://www.therhinos.co.uk/2018/05/02/could-you-help-save-the-life-of-a-fellow-rhinos-fan/

 

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1 Comment

  1. Lucy Whelan 11th May 2018

    Dear Pete,
    My heart is hurting for you and your family. Your blogs, and their insight into your incredible resilience, humour and courage have left me overwhelmed. I am so sorry that you are having to fight this battle- the world can seem a very cruel place sometimes- but thank you for your honesty and for sharing your fight. In the long, lazy afternoons of Coverdale barbecues nobody could know what cards life was going to deal us. I am just incredibly sad that something so cruel has happened to you.
    ‘Stay strong’ style comments seem twee and uncomfortable advice to give. I will just say that your strength shines through- your determination and positivity are remarkable. I pray that a donor can be found- I am diabetic and was told I’m not eligible to do a swab, but I believe that somewhere out there is your match. I hope that they are found, soon.
    At the risk of saccharine sincerity, you are a truly inspiring individual- an incredible role model to your children and credit to your Mum & Dad. These blog entries are so moving; your courage, pragmatism and honesty is absolutely incredible.
    Keep fighting, Pete.

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