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.

What goes up…

Oh, the irony…

48 hours ago, after 5 months, I was able to enjoy some simple pleasures most people take for granted and which are wholly underestimated under normal circumstances.

I could have a proper shower.

I could sleep on my front.

I could look in the mirror and not recoil at the sight of what can only be described as R2D2’s genitalia dangling from my chest.

Yes, the Hickman line had finally been removed!

This was the icing on what had been 5 weeks of decent news. Chemo working, no major side effects, hair restored*

*amusingly, I was required to wash my hair for the first time in ages a few weeks back. So used to being without follicles, I went into baldy autopilot and spent subsequent 10 minutes walking around the house with the shampoo still in situ. I’m having to learn to live my normal life again!  

and no stints in hospital. Christmas breezed into New Year without so much as a hint of ill health.

Then the day the line is removed, have a guess at where I ended up? Yep, A&E with a sick bug.

The good news was that 5 hours on the ward and a dose of antibiotics appeared to clear the offending microbes. That is, until 4 hours ago when at 2300, I got a phone call from the hospital to say they’d found another bug in one of my blood samples and could I come back in immediately as this one is prone to turning nasty if left unchecked.

So here I am, 0240 Sunday morning, surrounded by coughing, weeping and groaning (and they are the more acceptable noises coming from my ward mates) waiting for more drugs and tests.

The thing is, none of this is new news.

Its happened before and will invariably happen again. So why write about it?

Well, I guess with nothing better to do when sitting around hospital, I started to look beyond the surroundings.

It has all become very normal.

Being in A&E, being on drips, being given drugs, being recognised by the doctors and nurses! This is not how I envisaged life panning out and yet I find myself totally unfazed by all of it. This is the norm and will continue to be the norm for the foreseeable future.

Can things really get back to the way they were and really, is that the best use of time and energy? Can life be better than it was even with the tethers of myeloma? I might need to sign up to an online philosophy class to navigate all this thinking.

I know I still have motivation and drive to achieve things but whether it exits or not, it feels like there are now limits on what I can do, whether temporary or not.

I can’t get on plane so I can’t go on holiday or work overseas.(yet) Even when I get the all clear, insurance is going to be insane and I’ll still carry the disease until some brain box creates a mega curry that cures myeloma (Turmeric/Curcumin apparently does work so I can go on a diet of madras and Jalfrezi with impunity!)

https://www.express.co.uk/life-style/health/899096/Myeloma-blood-cancer-spice-turmeric-curcumin-stop-cancer

2018 will be the first time a full 12 months has been mapped out with a plan I have little say over. To hand over a year of ones life to the doctors in the hope they can work some miracles is both annoying and liberating.

I hate the thought of achieving a sum total of nothing in terms of goals. (although you could say surviving a stem cell transplant is target enough) I am the sort of person who defines himself by what he achieves rather than by a career alone; a thought provoking realisation given I’ve spent the last 15 years throwing myself into work. And a year is a long time. I’ll be 41, if all goes well, before I can enjoy the delights of a microwaved chicken and rice medley at 32’000 ft.

And yet having literally no alternative path to follow, the tough decisions that we all navigate on a daily, weekly, monthly basis, don’t really concern me. I have 1 thing to do and thats it.

Easy.

By this stage I really had expected to be seeing the end of this particular road. 2018 was “supposed” to be the year life realigned itself. But as has become clear, the path to controlling myeloma is full of twists, cross roads, pot holes and a shit load of road works; its like someone stuck me on the M25 at rush hour and I’m still to get to my exit.

Its not all that bad mind; as I inferred at the outset, this bizarre, drug supported uncertainty, is my new world. I haven’t necessarily accepted it, but my head has got used to it.

It has all become very normal.

 

 

 **Check out my new back**

 

 

 

 

 

 

 

 

 

 

 

 

 

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2 Comments

  1. JIM & SHEILA 10th January 2018

    Hi Pete,
    Seems like the occasional step backwards but overall there are more steps forward……..
    That is some metalwork you have in your spine now – so that’s one thing to consider as and when you go through airport security next time – keep the X-ray handy..!!
    Stay positive – and best wishes from,
    The Smarties

  2. Brenda Shipton 11th January 2018

    Two steps forward and 4 steps back seems too be the pattern you have been following Pete, your positivity and above all sense of humour will I know help you conquer new heights in 2018. This year I am sure will give you and your life a new start. Love, hope and prayers are with you now and always. You have that coming of age too look forward too soon. Remember this every 10 year milestone now will give you a different outlook on your life. xx

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