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.

you don’t have to

It’s been 2 cycles of chemo since my last post and in truth, not much has happened, which is a good thing.

Paraprotein continues to stay level at 2.7 which is great.


I am no further forwards with getting support for funding of the current chemo regime which is frustrating but not surprising given the beurocracy that dictates much of the health system.

I have until September to navigate this particular challenge so between me, my doctor and Lady Luck, I will carry on pressing all the buttons I can with hope and optimism.


So for the last 5 weeks, there has been very little of note to report and I have not done much to change this. This was deliberate on my part because I got to a stage again where, as I felt around Christmas last year, I was just sick of it all. The campaign, the in-limbo state of no donor. Just apathy which I am not proud of but which was a sign of needing to take a step back and just wind it in.

Fast forward 5 weeks and my brain is back in gear and I am ramping back up again to hit it harder and bigger. Because that is the only way things are going to change and because it is the only way I know how.

So what’s the plan?

Well, I am going to start by spending the next few minutes setting out why you might not want to register as a potential stem cell donor.

The “not” above, is not a typo.

For the last 12 months, I have dedicated as much time as health has permitted, to making more people aware of stem cell therapy, and getting more people registered as potential stem cell donors.

It was top of the list of issues I could control against a back drop of so many personal decisions I could not influence.

And yet I still find that a decent percentage of people still turn a blind eye at donor days, forget to register after committing to think about it or just say they do not want to.

All of which are well within the rights of those people. No-one has any obligation to anyone else regardless of the sincere or severe nature of the ask. Nor should people do something they have no desire to do.

Our ability to act independently and make our own decisions is a gift we all have the right to exercise.

Let’s be honest, we have all walked down a high street and ignored the clipboard wielding charity worker or fabricated a meeting to attend or train to catch. (or is that just me?)

Hell, we would be destitute ourselves if we said yes to every charity ask. So it makes perfect sense that someone would make every effort to walk on by a DKMS stand when the red banners and t-shirts are out in force.

“PLEASE, I HAVE NO MORE TO GIVE!!”

Then there are the needles.

Who really likes needles?

There is no getting away from the fact that at some point, even if it is not on the day of swabbing, you are going to need to face the dreaded syringe of doom.

I have been prodded and poked more times in the last 2 years than an adult movie star and I still hate the damn things. No getting used to them.

Even if they don’t hurt (anyone in the know will recognise the phrase “sharp scratch” that is always rolled out by the nurses before administration) they are irritating.

And the donation process is also a bit of a hassle.

Time off work or away from the daily routine in the build up to and during the main event. You might get recompensed for this but the dog/kids/partner (in that order if you have all 3?) will be inconvenienced and need working around; donating is absolutely going to break the daily cycle we all forge for ourselves.

Hospital food that you will have to put up with instead of the gourmet coffee and sandwiches we are all used to consuming.

And quite possibly the most justifiable of reasons not to donate is that the stem cells are yours.

No-one, regardless of the need, has a right to them. They are part of you and to impose moral, judgemental arguments upon a person to press them into donating is unethical and a dangerous precedent to set in a democratic society.

All of the above are why I think it is fair and reasonable for people not to register.

And yet even in the face of what are just and honest explanations for not engaging with the plan, I will continue to push 10’000 Donors.

Yes, I have a personal desire to live longer than 7 years but I have a much deeper vested interest energising my desire to overcome all of the hurdles facing the underrepresented global registry.

10’000 Donors may have started from a personal perspective but it is so much more than that now.

We all have the right not to engage. In absolute sincerity and respect I stand by all I have written above.

But read on and ask yourself.

Are those reasons really enough?


https://www.dkms.org.uk/en/patients-searching-donor

https://www.dkms.org.uk/en/baby-harri-needs-hero

https://www.dkms.org.uk/en/hafsa-has-fanconi-anaemia-and-needs-blood-stem-cell-transplant

https://www.dkms.org.uk/en/meena-needs-match-fight-acute-myeloid-leukaemia-aml
https://www.dkms.org.uk/en/antonio-has-been-diagnosed-myeloma

https://www.dkms.org.uk/en/chloe-has-diamond-blackfan-anaemia-and-needs-matching-blood-stem-cell-donor

https://www.dkms.org.uk/en/allys-search

https://www.dkms.org.uk/en/henry-battling-diamond-blackfan-anaemia-rare-blood-disorder
https://www.facebook.com/paddysplea/

https://www.dkms.org.uk/en/antonio-has-rare-form-lymphoma

https://www.dkms.org.uk/en/tania-urgently-needs-blood-stem-cell-donation

https://www.facebook.com/finnthefabulous/
https://www.dkms.org.uk/en/marrowformarley-survive-aplastic-anaemia

https://www.dkms.org.uk/en/help-mark-beat-chronic-myeloid-leukaemia-cml

https://www.dkms.org.uk/en/charlie-needs-match-beat-acute-myeloid-leukemia-aml

https://www.dkms.org.uk/en/dave-west-yorkshire-has-acute-myeloid-leukaemia-aml

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2 Comments

  1. June McCleave 14th May 2019

    Stay positive Pete. People are essentially good and really want to help, well that is my experience. Just need to look at all the swab events going on e.g. Eskdale Young Farmers last Saturday. They just need to be told about Myeloma and how they can help. Important to get the message out there and that is exactly what you are doing. Nobody could do it better. So proud of what you are doing. Keep going. Xxxxxx

  2. Fiona Hackeyt 14th May 2019

    Hi Pete, keep your chin up and keep faith in humankind. People are essentially good but just need a push every now and then! Do DKMS tour the country doing sign up sessions? We think about you a lot. X

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