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.

Seven

There is a certain security that comes with ignorance.

I’ve spent so much of my life planning ahead, trying to achieve as much as I could with my ability whilst not really knowing how it would pan out, if I’d succeed or even if the decisions I had to make were the right ones.

But through that uncertainty came the enjoyment of a challenge and the knowledge that if I put in the effort and the moons aligned in my favour, I might just end up where I set out to.

_________________________

 

This post has been the hardest one I’ve had to bring myself to write.

Before last Friday, although there was always the proverbial elephant in the room about the true nature of myeloma, I’d been able to compartmentalise the severity of the disease and press ahead with the treatments in the hope that the drugs would work and my family, friends and I could settle into a new normal, of life with cancer,  but a norm non-the-less.

I asked the direct questions and got direct answers.

The chemo has got me to a place that is much better than a year ago but for what ever reason, which is still unknown, my myeloma is more resistant to chemotherapy than others.

There is still no donor (they are searching the registers again) so we will now crack on with an autologous transplant (my own cells) starting 16th April.

I can however only have 2 stem cell transplants as any more, according to research, do not elicit any positive results.

This means I am reliant on the transplants giving me a solid number of years remission before I have to call upon the remaining drug treatments.

With the current crop of drugs available, the precise words used by the consultant were

“If you make it through the next 7 years, you will have done well.”

Let me just put that in context.

If no donor is found, 7 years is the figure derived from 2 autologous stem cell transplants giving a year of remission each (could be more, could be less) and the remaining drugs available being able to keep the myeloma in check for an average length of time.

If a donor is found, the hope would be that remission could be longer.

Obviously, sadness is the overwhelming feeling I have. But not because of the challenge of going through treatments.

It’s what I might not get to experience with my family that fills my head and heart with most disappointment. Not seeing my boys grow up, succeed and fail as we all did. Leave home. Meet partners. Become the men I know they can become.

Jenn, Max and Seb do not deserve this.

And I want to be a husband and dad to my family. To be there to play that role as they all go through good and challenging times. I married Jenn under the assumption that I’d be that grumpy old man (yes, grumpier than I already am!) in the rocking chair on my porch in years to come. 

I can almost map out my future which right now, is a truly painful knowledge to carry.

Ignorance can be bliss.

____________________

 

When all is said and done however, nothing has really changed.

I do not ignore the conversation or the projection but I have no intention of simply accepting this as written. I have control over my approach and attitude and fully intend to focus my efforts on getting through every stage of treatment and coming out the other side for a considerably longer tenure than 7 years.

I have age and fitness on my side so even if all I can do is go to the gym and moisturise regularly, then that is what I will do.

What I can also do is find someone with the same obscure genetic makeup as myself; so getting as many people signed up as far a field as I can, is now my goal. Selfishly, I am of course doing this for my own survival but having seen firsthand the damage this illness can inflict upon the patients and their connections, this can only be good for the many people in a similar situation.

I have always said to Max and Seb that even when things get challenging, to never give up.

This is a mantra that I genuinely buy into.

 

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11 Comments

  1. Andreas Dåvøy 27th March 2018

    Man… it is hard to see that you cannot seem to catch a break with this horrible disease! Still, I am well impressed with your continuing great approach to the situation you are facing – like you said, with “no intention of simply accepting…” This is easier said than done, and I’m sure that even you for brief moments fall apart and resign for a moment. But; I firmly believe that both you and those fantastic people arround you benefit greatly from the approach you describe so well (probably the only approach you know) – you are an amazing guy my good friend! Stay strong when you can – and when you cannot, remember that we are a lot of good people beside or behind you Pete! We all love you – hope to see you soon! Andreas

  2. Mike Dsy 27th March 2018

    For once I don’t know what to say

  3. Gary Morgan 27th March 2018

    Inspirational Thank you

  4. JIM & SHEILA 27th March 2018

    Thanks for the latest ‘hard facts’ update Pete,
    It is difficult to comprehend there is not a single match to your DNA – at the moment…..
    Surely, over time with more donors coming into the scheme it will happen, however, short term we are confident you have the right team around you to make the autologous transplant work and work well.
    Stay strong and positive to be in the best position to make this next step succeed.
    The Smarties.

  5. Caroline 27th March 2018

    My husband was diagnosed in 2011 had autologous transplant 2013 and I have had the most brilliant 4 years .
    The upside is that every moment is a moment to be lived so keep that focus . You will make memories that many won’t if they live twice as long .
    Transplant was very successful and my research suggests myeloma is no longer the terminal disease it was and there is hope. So fingers crossed you can get a good few years under your belt with your boys Sadly he got the short straw and managed to get a completely unrelated primary cancer…
    Just take every day as it comes and do what you want to do today .

  6. Stacy Woodhouse 28th March 2018

    Hi
    I am very much in the same situation as you are. I am 37 with a little girl called Harper-Mae. I am also under The Christie and I have multiple myeloma. It all first started with a bad back Sept 16. Feb 17 a disc in my spine was broken with what they thought was a Solitary Plasmasytoma. They cemented my spine and did the biopsy. We now think that if a PET scan would have been done at this time they would have found them all. I’m due to have an Stem Cell Transplant May 18 . I wish you all the luck in the world and hope everything goes well for you xx

  7. Jay James 6th April 2018

    Pete such hard read (with a tear in my eye), stay strong.
    My Stem Cell Swab pack has arrived today, along with Brad & Aled.
    Keep fighting as we know you will.

  8. Sarah Habegham 24th April 2018

    Hiya
    I have registered for a test kit following my connection who posted this on LinkedIn. Heres hoping.
    Sarah

  9. Abi 4th May 2018

    Hello Pete,

    You are in my prayers. I pray that God heals you and makes your health perfected.

    I also pray for strength for your family.

    Amen

  10. Rebecca Gray 4th May 2018

    You are a very inspiring human being. I am on the rgister already, my donor ID is GBDKMB847475 I may have alreasy been ruled out but just in case. Sending positive thoughts.

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