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.

This time next week…

I have always been goal orientated, so the new year is one of those odd times when like millions of people the world over, I look ahead and with the best of intentions, set out some challenges for the year.

Given that this time last year I was still mid trying to get the paraprotein under control, 2018 – 2019 is the first new year post diagnosis, where I’ve had opportunity to look forward, with a reasonably clear head, and consider what I’d quite like to do.

So much was achieved in 2018, despite much of it involving bald heads, bags of bloody horrible chemicals and time locked in a hermetically sealed white room. As I sit and type, it doesn’t feel like I went through it at all, even though there is evidence aplenty showing me in a pretty unhealthy state.

I am sure that my incredibly “Smart” Psychologist sister-in-law Nic (never look into her eyes, I swear she can read and control minds)  could add scientific input as to how the brain finds ways to normalise even the most abnormal scenarios, but that is what I feel has happened to me.

Let me summarise 2018. You may already appreciate how bizarre a year it was;  yet I reflect upon it as pretty standard in the new world:

  • My best birthday party ever (or at least on a par with my 6th birthday when I got the mega sized Milenuium Falcon and an X-Wing Fighter. Mum threw them away when I went to university. There goes my retirement fund.)
  • A(nother) change in Chemotherapy
  • Recovery from a broken back
  • Over 6 weeks in hospital
  • Newcastle finished 10th in the Premier league
  • Had an autologous stem cell transplant
  • Found another broken vertebrae that cannot be fixed
  • Had my face plastered across the UK transport network
  • Got on Sky news
  • Like a newborn, had all my jabs again
  • Took 4 weeks to get over a simple cold
  • Started the 10’000 Donors campaign

And I thought that training for a triathlon took dedication!

But to me, it feels like that was all done by someone else.

Anyway, 2018 is done and can now be filed away under the “what lessons can I learn from that?” category.

It  lays the foundation for more of the good stuff in 2019, especially with the campaign; so I return to the question that always centres my thinking:

What is in my control?

Thing is, the elephant in the room that is quite clearly out of my control i.e. that nuisance of an incurable, unpredictable cancer, now has a response to my question and makes me think twice about looking beyond next week.

Here are some examples so you get where I am coming from:

Me. Shall we plan a holiday with the family abroad for the first time in ages?

Myeloma. You wont get insured for that without remortgaging your kids. You might relapse then you’ll not be able to go and lose the money you fronted.

Me. I’d really like to enter some triathlons this year

Myeloma. In your dreams sunshine. You’ll probably break your back again just getting into a wetsuit.

Me. I want to get back into a more normal day to day routine and reignite my career.

Myeloma. Good luck with that. Who is going to accommodate your illness and give you the chances you had before?

Now don’t get me wrong, much of that emanates from the glass-half-empty mentality that occasionally creeps into my thinking, but they are considerations that need fronting up to. Like an extra barrier that need traversing whenever I think of planning something.

Which you will all know irritates the hell out of me!

I hate shackles of any kind, especially those that curtail me in doing what I want to do.

And to complicate the decision making process further, there is another voice to add to the mix.

(I call this voice Tristan because it very much reflects the approach to life regularly vocalised by one of my best mates)

This one says “why the hell are you not out there doing everything you want to do because your clock is ticking mate?!”

Me. I’d really like to do X,Y and Z but we really should save the money

Tristan.  Pete, the mortgage will get paid off anyway when you depart so why the hell don’t you just get on with enjoying it?!

Me. But if I spend it now I know I wont have enough for [INSERT ANY CHILD BASED OUTGOING] next month

Tristan. It’ll be fine! You can’t take it with you so treat yourself.

for the record, the real Tristan has never suggested I not pay my mortgage. These are hypothetical  examples whereby I apply his more relaxed approach to decision making!

Talk about conflict.

Both are right and wrong in equal measure.

So my approach?

Accept the risks and find a way.

Cancer should not be used as an excuse not to live.

I accept it won’t be plain sailing and that there will be curve balls thrown at some point, but that is the same for anyone.

Hell, if you aim for nothing that’s precisely what you’ll get. At least if I try and don’t make it for whatever reason, I’ll have got further than not trying at all.

And when I am 70 years old, penniless and without a home because me, Tristan and the rest of my mates frittered it all away skiing, buying Ferraris on credit and making twice-yearly trips to the casinos of Las Vegas, Macau and Dubai; at least I’ll sit cold, hungry and achy, but content, in the knowledge that in the preceding years, I bloody enjoyed myself!

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Despite the above, I have still not decided what to go for in 2019, but I know I won’t be held back by indecision or lame excuses.

And in truth, the only real goal is to be sat on my sofa next to my lads typing another monologue this time next year, and the year after, and the year after…

 

 

 

 

 

 

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