MJN
Posted by
MJN

Fight vs Facts

MJN
Posted by
MJN
21 Oct 2014

Like anyone else I’ve used the phrase “emotional rollercoaster” in the past but when you think about it, it’s a pretty lazy metaphor in all but the fact that rollercoasters go up and down. On an actual rollercoaster there shouldn’t be any emotional “downs”  - that’s not really the point. From the descent of the safety restraints your heartbeat picks up as the realisation that there’s no going back sinks in; no fight, no flight. The slow, clunking ascent to the summit of the rails tortuously builds tongue biting, eye-screwing anticipation before physics takes over, the balance is tipped and the carriages plunge towards the earth at seemingly unstoppable speed. The corkscrews, underpasses, loops and peaks disorientate and stagger in a way that means, for a few moments, reality is suspended. You’re having fun. There have been many times since March 2013 that I’ve wanted to suspend reality but the truth remains a constant and brings you crashing back down to earth in a way that is neither thrilling nor exciting.

No rollercoaster will emulate the crushing, hopeless pain of being told that your chemo hasn’t worked and in the same breath, nor can it replicate the soaring, euphoric highs of unexpected good news. Thank God, nothing can compare to being told that, if this one doesn’t work, your life will be measured in months, not years but if you could bottle the hope given by a light at the end of tunnel….  if only. You’re not on a rollercoaster, you’re in a small boat on a vast ocean in the eye of the storm.

I’ve spent a good chunk of my career poring over statistics and in that time I have become enlightened and cynical in equal measure. Statistics can hold the key to identifying need and improvement whilst at the same time being used as a brutal stick to beat you with. Stats can boost you in one moment and bring you down in the very next sentence. One person’s success is another person’s failure – it’s all down to the interpretation: 90% of our kids have progressed beyond our expectations! But what about the 10% that didn’t? Our attendance is up to 98%! What about the 2% who aren’t attending when they should? You get the idea. I can and have made statistics say anything I want to bolster my case but there are some statistics that can’t be doctored, spun or ignored.

Day zero fast approaches – that’s the day when I get my new stem cells. The priming chemotherapy is 5 days in with 2 different therapies today plus 4000ml of fluids which, along with a drug that makes you wee to protect your kidneys, will probably result in 20 trips to the toilet. Over the 18 months that I’ve been treated I’ve had 8 PET scans, 4 HRCT scans and 15+ chest X-rays. I’ve had a lot of stuff put into me with 16 blood transfusions, 12 lots of platelets, 8 radioactive tracer dyes and roughly 72 infusions of toxic chemotherapy drugs. I’d love to be able to calculate how much blood has been taken out too in the form of hundreds of 5ml tubes – there were 7 just this morning. As you can see, the numbers boggle the brain.

Before starting my stem cell transplant we were given the stark facts about the chances of success. No spoons full of sugar to help it go down. No ifs and buts. The facts remain the same. In life, you’d take an 80% chance of success in most cases. An 80% chance of winning a bet? You’d take those odds. An 80% chance of the train being on time? Not too bad. But what about life itself? These facts relating to donor stem cell transplants (known medically as an allograft) are backed up by the stats. The stem cell transplant has an 80% chance of succeeding and the remaining 20% remains the dark elephant in the room because failure is absolute. That’s terrifying but those are the facts, so how do you get your head around that one? Here’s how I’ve done it with the constant, absolute support of Alison and many others.

Irrespective of the statistics, prognosis and analysis, it is simply impossible to measure or quantify the value of one individual’s determination to overcome cancer. I continue to fight and I will not stop until this thing is beaten. There are no stats for that.


I keep banging on about it but please get everyone you know to sign up to the Anthony Nolan register or the National Blood Service Bone Marrow Register. It’s painless, miraculous and can give people like me the 80% chance of success as opposed to the 100% failure that would be the case in the absence of a donor. I know which stat I prefer. To the incredible researchers, fundraisers and supporters at Leukaemia & Lymphoma research, thank you. To my anonymous donor, thank you. I won’t let you down.

If you've recently been diagnosed with Hodgkin lymphoma and have yet to receive treatment you could be eligible to take part in a new clincial trial. Read more here.

Comments

21.10.2014

I've really enjoyed reading all your blogs - wishing you the best of luck for day zero.. really hoping everything goes well for you. Lauren

21.10.2014

Yes best of luck sending down the internets. Having read your very thoughtful blog I think it's fair to say that you definitely won't be letting your donor down! I'm even tempted to sign up to Anthony Nolan myself ;)

Let us all know how you go ...

Helen (LLR)

22.10.2014

Very best of luck Mark, your blogs are great and I can relate to a lot of what you've been writing about having been through treatment for ALL myself... hope all goes well for you this week.

Dan (LLR)

Anonymous
22.10.2014

Mark, the facts make awe inspiring reading. We are with you, Marie and Jim xx

Anonymous
22.10.2014

Well said Mark and I am positive you won't let your donor down. Following my own husbands stem cell transplant 3 years ago, 800 people from his work joined the Anthony Nolan register so that's a bonus. Keep up get good fight we are all behind you.

Anonymous
22.10.2014

Mark,
Thinking about you and wishing you luck!
Your blog is truly inspiring - take care buddy...
Hayley & John

23.10.2014

Another brilliant blog, Mark!

Best of luck with the transplant. I remember my transplant day vividly and remember finding it really difficult to get my head around the fact that a bag of cells that looked like tomato ketchup and given to me like a regular blood transfusion were what was going to save my life.

All the best Mark and good luck in the next few weeks as you wait for the stem cells to grow in to the space left behind by your bone marrow. You're a real inspiration to us all and have already made your donor proud.

Keep us posted and if you ever want to chat about anything with someone who's been where you are now, give me a shout! Andy 

Anonymous
23.10.2014

Hi Mark, just wanted to let you know all at IHOM are thinking of you-keep us entertained with your blog and I will see if I can match you with some boring HT reply!!!

Shaun