Monday, October 31, 2016

Lessons from a Survivor

I came across this video from the Lymphoma Association (UK)'s Great Purple Collection, which raises funds for Lymphoma support.

(The Lymphoma Association also has a fundraiser called The Great British Tea Break. In the U.S., if we want to raise money for cancer, they usually make us walk, sometimes all night, sometimes for the length of a marathon, sometimes by running, biking, or swimming (or all three) instead of walking. I get it -- we're encouraging people to be healthy. But I really like the idea of raising money by drinking tea and eating cake. I am totally on board with that kind of fundraiser.)

The Great Purple Collection includes a series of videos of cancer patients discussing their experience, and this video of a man named Bernard really struck me.

Bernard was diagnosed with Follicular Lymphoma when he was only 20 years (which is very young for that diagnosis, as most of us know) in 1968, and because he was "under the age of consent," he wasn't really told anything about his disease. (And since it was 1968, there wasn't nearly as much to tell as there would be these days.) He was told he had Non-Hidgkin's Disease (it seems like they didn't even use the word "lymphoma").

A couple of lessons for me from Bernard's story:

First, we do know so much more now than we knew in 1968. We know more now than we knew in 2008, when I was diagnosed. It's amazing how far we have some. (And I keep saying "we" because, even though I'm in no way part of the research teams that are doing this, I'm one of their biggest fans, so I deserve as much credit as a baseball or football fan does for their team.) Even our attitudes seem to have changed in the almost 50 years since Bernard was diagnosed -- we're much more open about talking about cancer. That can only be a good thing.

Second, Bernard had had Follicular Lymphoma for almost 50 years! We've had some discussion in the comments in the last few weeks about Overall Survival statistics, and what they mean, and which to trust. As I've said before, I've learned to ignore the statistics that make me sad, and focus on the ones that make me happy. And Bernard's story makes me happy.

It makes me think of something that someone said in the support group a few years ago. Her doctor told her that with the advances happening in treatments for FL, if they could keep a patient alive for 5 years, they could keep him alive for 50. I think of that a lot.

Will we all be alive 50 years from now? Probably not. Can we apply Bernard's story to ourselves? No, we're all different.

But can Bernard give us some hope? Absolutely. There are 50 year survivors out there. A Follicular Lymphoma diagnosis is in no way a death sentence, and treatments will only get better from here.

I'm jealous of Bernard's Survival Statistic, and of his beautiful flowers, too. I'd love to put a bunch of them in a vase and serve you all a cup of tea.

And you better believe there will be cake.

1 comment:

Jurup said...

Great story and I agree with you that this is very reassuring.