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.

How Low Can you Go..?

3.5

Hmmm… What to make of this?

Well, it was 3.4 last month so “within a whisker of statistical insignificance” is as optimistic an analysis as I can make this.

In my heart I really did hope that I’d see another drop but of course, plateau was always going to be recorded at some point. And better to plateau near zero than not.

Plus, let’s not forget that when you look at the peak in the graph above I am a world away from that.

That. Was. One. Hell. Uva. Ride.

So what does this mean?

Time is now of paramount importance. It doesn’t matter how I got to 3.5 or how quickly I got through the chemo options. That is in the past and makes no odds to what there is to look forward to.

I have to hope that I stay here for as long as possible.

This of course is reliant on the current therapy and my body fighting, as it does every day, the disease that is smouldering away inside.

I still to this day find it strange, looking at myself in the mirror every morning and acknowledging that on the surface, all may look in hand but beneath nothing more than some layers of skin, there is a battle going on. That my body is attacking itself. 

My body is being a dickhead

But this, as I have said many times before, is out of my control.

Which makes what is in my control all the more important now.

2019 is all about taking the 10’000 Donors campaign seriously.

Not that I have not so far but it has been more reactive than a proper plan would ordinarily be.

I will continue to throw myself into all and any opportunities as they arise but December is about thinking more strategically. How to up those numbers as efficiently as I can in as short a time span as possible. (sounds very much like my work in finance so I should be well placed to set this out!)

Time is of the essence here but I refuse to fall back into the energy wasting limbo of simply living from one month to the next in anticipation of the next paraprotein count.

More useful is to use the next 30 days to do something productive. Then acknowledge whatever the number at the next review is and reset my mindset.

It can only do 1 of 3 things and the output from myself stays the same.

  1. It goes down. Stay level headed and carry on the campaign to find a donor
  2. It stays the same. Stay level headed and carry on the campaign to find a donor
  3. It goes up. Stay level headed and carry on the campaign to find a donor

All sounds very robotic but note that after my head flipped out the other week, I am much more attuned to what my inner self is chit-chatting about each day. I am very good at ignoring the emotive challenges myeloma places in front of me; averting my gaze from what is ahead and drowning out the noise with my own actions and plans.

All well and good as long as life is going well; or the pressure release valve activates and I unleash a truck load of expletives into the ether! (which having looked at it again is actually quite comical)

The whole situation is unfair. Even now I occasionally ask “why me?”

This is of course futile; wasted emotional energy.

But it is no longer about my own inwardly focussed inclinations. What it is about are the feelings, needs and wants of my family.

Tonight we put up our Christmas tree and I watched Max and Seb bouncing off the walls in excitement for what they have to look forward to.

These are the moments I literally soak up…

(and then they bounce off each other and royal rumble replaces the idyllic vista of 2 seconds ago)

They do not deserve to have this uncertainty hanging over their future.

Of course no-one has the right to presume longevity of life, health, happiness or anything in truth.

What is happening to me is not unique nor isolated.

But for them there is no control or understanding. There will be no answer adequate enough to placate the confusion and turmoil that might unfold (a long time I hope) in the future.

Which brings me back to the core of my motivation in 2019.

My family keep me going. My friends keep me going.

That my link to so may people is in question keeps me going and crystallises the connection we all have not just to our immediate circle of associates, but to each and every person on this planet.

We have so much more in common with one another than not.

You have a genetic twin somewhere out there. So do I.

At that level we are practically identical!

So 2019 will be my year of connection.

Through 10’000 Donors we will save lives; not only today but if all goes to plan, well into the future too.

It’s far from being the only cause out there worthy of attention but for obvious reasons, this one’s a bit personal.

 

_____________________

Unless something significant happens I probably won’t write anything before Christmas so for those of you who celebrate it, Merry Christmas. And for those who don’t, enjoy the time of year for what it is to your fullest!!

 

 

 

 

 

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1 Comment

  1. Zihni Yazıcı 6th December 2018

    Happy Christmas to you and the family. I hope all goes better than your/our expectations.

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