December 15, 2015

Spare yourself the shame

By
Margot, before she was diagnosed with blood cancer

Margot, before she was diagnosed with blood cancer

I’m a lucky guy.

Positive things, good things tend to happen to me. And that left me with a false sense of security a couple of years ago, because I always believed: “it won’t ever happen to me”.

Consequently, I spent little or no thinking time on the subject of ‘what if “it” happens ?‘ to me or my family.

Because, should anything bad happen to you or your loved ones, there’s nothing you can do about it anyway, right ?

Or so I thought.

But then, one day, the unthinkable happened and for us, it came totally out of the blue. For our family, “it” was Margot being diagnosed with a rare blood cancer and being rushed into intensive care, in “perilous” condition.

Unless you have experienced something similar yourself, it’s difficult for anyone reading this to really comprehend what that’s like. Any description I might try to give would certainly fall short of conveying the lasting, profound and final impact this had on Margot, me, our family and our loved ones.

Vicki feeding Margot a syringe of milk via her naso gastric tube

Vicki feeding Margot a syringe of milk via her naso gastric tube in the Paediatric Intensive Care Unit at Great Ormond Street Hospital

At the time, amongst all that chaos and uncertainty, came two overwhelming feelings which hit me really very hard, namely: hopelessness and shame.

Hopelessness – because as parents, Vicki and I had to let go of and surrender our baby daughter to the medical team in intensive care, where it was all touch and go, particularly for the first 10 days. At that stage, there was almost nothing more we could do for Margot, other than to be there by her side, witness and follow what she had to go through, without any certain outcome and with no guarantees.

This photograph was taken shortly after Margot regained consciousness after 8 days in a coma on life support - this was her smiling

This photograph was taken shortly after Margot regained consciousness after 8 days on life support, in a coma – this was her cracking a smile

Shame – because Margot found herself in a desperate situation where she urgently needed to rely upon selfless & benevolent red blood & platelet donations from others. On arrival at Great Ormond Street Hospital, the doctors didn’t try to treat Margot’s blood cancer – the immediate need for red blood cells and platelets were vital to simply try and stabilise Margot’s condition.

And I felt so ashamed because I hadn’t ever given blood before.

Of course, there was nothing I could have done about the despairing feeling of utter helplessness, but I might have spared myself the sense of deep personal shame for never having donated blood.

The thing is, I don’t really have a good explanation for why I hadn’t. In fact, I don’t have any explanation at all. I was previously aware of the need for blood donors but I just assumed that someone else would step up and provide, instead of me.

In the 14 months after diagnosis, Margot blossomed & grew from infant to toddler, thanks to the anonymous blood & platelet donors and a young man in Germany who donated his bone marrow

In the 14 months after diagnosis, Margot blossomed & grew from an infant to a toddler, thanks primarily to the anonymous blood & platelet donors and a young man in Germany who donated his bone marrow

Later, when the need for Margot to have a bone marrow transplant arose, I came to understand that there was also a register of unrelated potential stem cell donors that existed. I was completely unaware of this before. I hadn’t even heard of a bone marrow transplant or a stem cell transplant before, but if I’m honest, I’m not sure how much that would have mattered to me previously either.

The best I can say for myself was that after literally years of persuasion, Vicki had finally got me to register as an organ donor some time before.

The point I’m making is that I hadn’t ever really stopped to think about my individual social responsibility before. Today, I almost regard it as a basic human duty to give blood, be a potential stem cell donor and organ donor.

And given that only 4% of the UK population give blood and only 1.6% of the UK population is on the stem cell register, I believe that there are millions of people who share a similar mind set to the one I had two years ago.

That’s why Team Margot is about spreading awareness, being a sign-post to relevant information and encouraging action.

We want to help all those people who, just like Margot and our family, never thought they’d need a bone marrow transplant.

I have previously referred to stem cell registration as being the “gateway to giving” because registering is a one-time action and it can be completely painless, without even needing to involve a needle.

The more potential stem cell donors there are on the worldwide registers and the more mixed race and BAME (Black Asian and Minority Ethnic) people that sign up to those registers, the more matches will be found for those patients in need.

And ultimately that will mean more lives are saved.

You can help make a difference and perhaps even save a life.

And that feels great.

Team Margot
Together, saving lives

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Did you know… Margot was mixed race, which was the key reason why it wasn’t possible to find her a perfect match.

Did you know… mixed race and BAME patients have only a 21% chance of finding their “perfect” matching donor, compared to 69% of those who are Northern European and white ?

Find out how YOU CAN SAVE A LIFE.

WHAT’S INVOLVED WITH A STEM CELL OR BONE MARROW DONATION:
http://www.teammargot.com/once-im-registered-how-do-i-actually-donate/

WHAT’S THE DIFFERENCE BETWEEN A STEM CELL TRANSPLANT & A BONE MARROW TRANSPLANT:
http://www.teammargot.com/whats-the-difference-between-a-stem-cell-transplant-and-a-bone-marrow-transplant/

HOW TO REGISTER:
http://www.teammargot.com/how-to-register/

BECOME A BLOOD DONOR: http://www.blood.co.uk

REGISTER AS AN ORGAN DONOR: https://www.organdonation.nhs.uk

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015) & Margot (2012-2014)

Posted in: Journal