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.

Days 6 to 14

So, it’s day 14 and I’m still in here.

Truthfully, I don’t think by my own unscientific measure I’ve descended beyond Garfield this last week.

Tired, not eating as much and hair has well and truly thinned but I have not hit the depths (which will no doubt follow this foolish statement) I expected.

Totally bored being stuck in a room with only myself for company but such is life.

Never a fan of routine, I’ve found myself focusing on 1 event per day; that being the results of the blood test.

Bloods taken around 0600. Results in around 1000.

Still stubbornly but not surprisingly flat. There was a small positive movement picked up today but nowhere near even leaving-the-room territory let alone hometime.

And in the absence of external stimulation, here is an example of where I find my brain focusing.

I’m sure the psychologists would have a field day with me right now as a tell the flatscreen to piss off every time I switch it on

I know that the NHS is a budget conscious organisation but seriously, doing a deal with LG (any other brand would do) on flat screen tv’s is just a saving too far. Nobody in here needs reminding every time they stick the news on!

 

 

I won’t pad unnecessarily as this week really has been uneventful. But I will update you on one conversation of note that was very interesting,

On Friday I had a call with a guy called Professor Steven Marsh, from Anthony Nolan. He is a world leader in genetics and 30 years ago, he started the database of tissue type sequences that is used today to match donors with recipients as “a bit of a project.”

Thank goodness he did.

I’d approached him as I was keen to see if it was possible to see within my tissue typing, if my gene combinations happened to be more prevalent in certain communities e.g. Chinese, Portuguese, Mongolian  etc… with a view to targeting my search for a donor.

As we already knew, I am rare.

That’s just the way it is and there are a number of variables within my makeup that contribute to that.

What he did say was that there was nothing notably Chinese that stood out but certain markers were much more prevalent in the Portuguese and Spanish communities. So I’m more European than Asian.

But the combination is still uncommon.

It was also not lost on me that the register is 40 years old now and its taken that long to get 30 million people on it.

And I still don’t have a match.

So it’s a cold reality but something to aim for non the less.

Get more donors signed up. A lot of new donors.

Look far and wide, be broad and go for big big numbers.

This is the project. To convey the message globally and grow that register in size.

It truly is beyond anything I have ever faced in terms of scale and importance and this week, there have been moments where I’ve questioned my ability to find a way to take it on. Is there really a match? How do you engage with and get people to sign up on this scale?

And yet it is really quite simple.

It doesn’t matter if there is a match.

All I have to do is believe that there is and to that end that’s all the motivation I need.

Then break down the challenge like any test into blocks.

Even if I don’t find my match (which I believe I will btw)  I can see the value that this project  can deliver.

Lives can be saved and people can be educated; what greater motivators behind doing something can there be?

So it starts now. Not sure how it will look but I know I have to try something.

Feel free too send ideas on a postcard (to my home please as that’s where I expect to be this time next week)

 

 

 

 

 

 

 

Next Post

Previous Post

2 Comments

  1. Lucy Whelan 3rd June 2018

    These blog entries are amazing Pete. As are you. Your positivity shines through- I am certain your match is out there.

  2. Rachel Ward 12th September 2018

    Hi Pete
    My name is Rachel. I’m 36 and have had a bone marrow transplant. I’ve always wanted to get more people on the register as even though my genetics are much simpler than yours, by the sounds of it, there were still only a handful of people in the world that matched mine.
    I saw something on facebook about you. I want to help. I live in North Wales.
    Please contact me if you want me to help.

Leave a Reply

© 2018 ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

Theme by Anders Norén