“I’ve got to make a podcast for college so I’m going to make it about you and your brain tumour," Felix, my 19 year old son, told me a couple of months ago. And so he has, though it was with a certain amount of trepidation that I agreed to be interviewed.
I had to go back to January 24 2016, when, on a country hike with friends, I suffered a seizure that led to being diagnosed with glioblastoma, a rare and deadly form of brain cancer. Almost a year and a half on, I’m still in shock. And if I’m unable to process the diagnosis properly, then I don’t know how my children are able to.
And they are, of course, the most important people by far and away, in this tale.
They’re used to change. We uprooted them from a tight-knit, loving community of family and friends in London to the exhilaration and excitement of a life of exploration in New York. Felix was 9, Tess 6, and Emma just a couple of weeks shy of her fourth birthday.
They’re a tight trio because when we moved here we didn’t know anyone and, although everyone was incredibly welcoming, it still took several years before they really settled in. Same for my husband Ed and me. We never knew how long we were here for. Still don’t. But it’s now 11 years and the kids are fully acclimatised, as they put on their pants, cross the sidewalk and shell out some bucks for an iced tea.
Their happiness = my happiness. And until my diagnosis, it looked like the paths before them were pretty good. Like most parents, I’ve always been obsessed with how they’re feeling. And losing your mother in your teenage years has got to be up there with the worst of the worst shitty cards to be dealt.
There’s no real guide book to what to do in this situation. Rather, there are a gazillion websites and blogs and books suggesting what you should do. Ed and I found ourselves adopting our regular approach: be as open and honest and transparent as possible, hoping that this will help keep everyone calm, even as we cope with our world being turned upside down. And let’s help ensure they don’t obsess about this 24/7, while making it clear that they should feel free to ask questions, express worries or whatever, whenever.
They’ve shown great emotional maturity in the way they’ve lived with this bloody thing I call The Evil Fucker, or TEF. I started blogging as a way to update friends and family, but also to demonstrate to the kids that they were hearing exactly the same as others. No secrets but also no alarms.
This approach seemed to go well, but I was always intrigued to know whether they really were doing OK, or whether they were just good at hiding their worries. Now, with Felix's podcast, I got to see.
I stand in awe at this achievement. It’s not just that his technical skills, from tight editing to pitch-perfect music choices are so good. And it’s not just the way he decided to tell the story, in four bite-size chunks. For me, the joy of what he’s produced is seeing how he’s taken hold of TEF and transformed it into a tale of such beauty. One that offers more than glimpses of how me having this disease has been for him.
That’s the real tale – not how I’m coping, but how he is. And now I know that he’s able to. Because he can communicate to the world in a way that’s compelling, insightful, and mesmerising. Showing that he can open up about what’s going on with me is testament to one big healthy psyche. What a guy. Listen up and enjoy.