May 30, 2015

How are you coping ?

By
17 October 2014

17 October 2014

As a family, I know we’re not alone on our journey.

I’m not referring to all the wonderful people who have helped & supported our family, nor all the fabulous folk who are right behind Team Margot and also out front, helping to make a difference and sharing what we stand for.

Instead, I’m referring to the patients and their families who are either going through or have already been through a similar traumatic experience: of having a sick loved one with a life threatening illness or disease.

In the case of blood cancer, the outcome that the medical teams work towards is what they call “disease free survival” for the patient. Nobody is either too quick nor too familiar with the use of the word ‘cure’, but they do aim for, hope and tend to regard disease free survival two years post bone marrow transplant (BMT) as being a good indicator that the patient has a decent long term prognosis and prospects.

If the patient survives, in one sense it’s a blessing of course but “disease free survival” doesn’t necessarily mean complication free survival. To one degree or another, there are complications and life compromises. At best, the complications are restricted to a need for daily penicillin for the rest of the patient’s life and if they’re very lucky, the BMT survivor will remain fertile.

That’s the best case scenario.

And then, unfortunately, there are patients who, like Margot, don’t survive.

Quite aside from where the patient is on their current journey, or the patient outcome following a BMT, the patients family and loved ones have to accept and then learn to manage the situation they find themselves facing.

I’ve always known that cancer is indiscriminate – it doesn’t have any regard for its victims, their age or gender. But hitherto, I hadn’t really appreciated the devastating and lasting impact the disease can also have on the patients family & loved ones.

Every 20 minutes in the UK, someone is diagnosed with blood cancer. In the U.S. it’s every 4 minutes. What an awful set of statistics. Now consider the number of people in those families & the loved ones who are affected too.

Beverley de Gale and Orin Lewis set up ACLT after experiencing difficulties in finding a bone marrow donor for their son Daniel. Sadly, a few years later Daniel passed away. When we met a few months ago, Orin told me that he tends to ask family members who have been through a similar experience “how are you coping ?” He does this recognising and understanding what the family are going through.

Of course, as individuals we react to and cope in different ways.

Personally, more often than not, I find myself taking solace in all things Team Margot. It helps me. I tend to feel a bit better. Importantly, Team Margot helps others as well. And as I am now beginning to realise, it’s not just other patients in need of a BMT but also other family members and the loved ones of patients who, much like many of our own family & friends find themselves in a similar situation to me.

In that sense, Team Margot can help to give focus to what I call the “family alumni” and help channel energies for the greater good.

However, there’s another school of thought which also grips my senses from time to time. On those occasions I become overwhelmed by the tragic reality that no matter what I do, nothing will ever bring Margot back.

I’m beginning to acknowledge those empty moments and have started to accept that they’re going to consume me from time to time and that there’s nothing that can be done to change that. I’m told that the next step is to learn to be compassionate with oneself, so I am trying to be gentle in that way too.

When I think back to when Margot was first sick and in need of a donor, it helped me to know that we weren’t alone and that there were others out there, going through a similar situation and who were willing to help.

For me, it still feels like that today. I’m so grateful to you for that and hopefully, if you’re reading this and it’s making sense to you as one of the family alumni, then you’ll appreciate that you’re not alone either and perhaps that might help you feel a bit better too.

Team Margot
Together, saving lives

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

Posted in: Journal