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.

I Can Live With This

What a strange way to live.

So much is happening at such a pace I’m almost at a loss as to how to explain myself.

But I’ll have a go.

Let start with last weeks good news.

4.8!!

I obviously hope it continues its trajectory to zero but for now I can live with 4.8; literally and figuratively.

Back in July 2017 when at its peak the paraprotein number was 74, my back was shot and I was quite possibly high as a kite on a Harry Potter-esque concoction of chemicals, I never thought this day would come.

Neither did the doctors.

Bizarrely, I don’t really remember much detail about the last 19 months as life became a month by month event i.e. simply living for the next consultants appointment and set of results.

I should really have a read of all the blog posts but I’ve got better things to do with my time!

What acutely recall is that at every turn of good and not so good news, something seemed to get in the way of finding a flow to life.

Like the grand old Duke of York; when I was up I was up, when I was down… you get the picture! And this seesaw of ups and downs just unravelled with no direct input from myself. I was just strapped into the roller coaster and let it follow its course.

As you will know by now, I tried, with varying degrees of success, to never allow myself to get carried away with good news or get too downbeat on the bad (I think I just about pulled it off but I am open to your correction!) … so I still take todays results with a pinch of reality.

But for the first time in as long as I can remember, I did allow myself a very brief moment to take stock of what has been, to be frank, a bloody shit time; and appreciate the positive news.

4.8

(I was expecting it to have gone up truth be told given the history of my results)

And for a brief few seconds, the pressure lifted and I felt normal and free of the anxiety.

There was no dark cloud. The sky was clear and sun shone both inside and out!

Of course then the devil on the other side of my brain chipped in with “its only temporary, it won’t last, don’t get your hopes up!”

And this is true.

But for that day, those thoughts could fcuk right off.

Which brings me nicely to the other stuff which is making life so engaging.

Yes, I am back on chemo and it is taking its toll again. I’m tired, my brain is foggy for chunks of the day and I’m not as sharp as I was when not on the drugs.

But the media world that is now accompanying my story is just bonkers!

Posters, interviews, blogs, presentations, adverts, news papers… who saw this coming? (again, I reiterate my apology for becoming a media floozy and clogging up every app on your phones)

And it is making a tangible difference too.

Of the 1333 (and increasing daily) new registrants we have signed up, the campaign has a confirmed 3 donor matches!

How cool is that!

People do give a monkeys which gives us all hope.

And I am beyond grateful to have engaged with so many new people I would not ordinarily have had the opportunity to meet. People who work in different sectors, live different lives and who have given me new perspectives;  got me thinking just a little bit more dynamically.

Yes, the catalyst for interaction is not the most pleasant, but I am becoming a more rounded, educated person as a result (I know it sounds very Jerry Springer but give me a little leeway!)

I am fully aware that the campaign is currently surfing a wave of interest and good will;  that over time, this might wane and I’ll have to think of new ways to reinvigorate momentum.

But like my (temporary!) moment of unbridled optimism at the result today, I think we can all just enjoy the small wins in what has turned into such a worthwhile endeavour.

___________________________

Remember this look? Not at my best 1 year ago…

 

 

 

… I never quite hit Sponge Bob when in the Christie…

 

…but given that images such as the one below are now circulating, I might just have allowed myself to get there last week.

 

 

 

 

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3 Comments

  1. Diana 15th October 2018

    I love reading your blogs; seeing your gorgeous inspirational face on campaigns and hearing about how you are changing the lives of so many in many ways; I think about you and your gorgeous family so much of the time, but most of all, I look forward to the day when you will announce to the world that you finally have a match. Pete, are a superhuman being and am so honoured to know you. Xxxx

  2. Liz 16th October 2018

    Well done Pete! Brilliant news – keep up the good work.

  3. Brenda Shipton 16th October 2018

    That’s fantastic news Pete, you deserve it. Keep smiling, keep the positivity and above all stay as nice as you are and always have been. You deserve a blo… medal young man…xx

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