A month ago, a friend of mine wrote a beautiful tribute online to one of her music students, an 11-year-old girl who’d recently passed away due to leukaemia. I froze, I just didn’t know how to react. I knew I had to say something, because I’m me: for the last 18 months I’ve been all over my friends’ social media feeds as “here-are-the-symptoms-of-leukaemia boy”. But I was broken. I ended up pressing the heart emoji and echoing some of her wonderful sentiments in a reply. And I sat there, so unbelievably sad for this girl, for her family, and for my friend. And then the survivor’s guilt kicked in: I felt completely overwhelmed with shame for still being alive, a 43-year-old man, when this lovely child with a future ahead of her was no longer with us.
I’ve had problems with my mental health all my life, and since building a career I’ve always struggled with imposter syndrome – the belief that I’m going to be found out as a chancer or a fraud, someone who lucked their way through a job interview, and shouldn’t be there. In some ways I thrive on it, it encourages me to work harder, and over time I’ve learned to channel my anxieties into fevered enthusiasm. Even so, this lack of self-belief, of self-perception is really hard to shake.
It’s no surprise to me that similar feelings occurred to me when I was in hospital. Like many people with acute forms of leukaemia, I was seriously ill before anyone even suspected I had blood cancer. I was diagnosed a day or two after being hospitalized, but I was so delirious I couldn’t really understand the actuality of “having cancer”. I didn’t have the long wait for a scan, for test results, or for a phone call from the consultant. This meant I didn’t have time to accept that I might have cancer. One minute I was ill, the next I had acute promyelocytic leukaemia (APL).
After a worrying start to treatment, I was left to recuperate, to get well enough to have chemotherapy again. I used to browse through the hospital shops, wander round the duck pond, sometimes sneak out to the nearby park, as if nothing was wrong. I felt like I was faking it. I knew that inside me, my bone marrow was creating a problem that could kill me, but on the outside, I looked OK. Apart from the eye patch, and the cannula tubes poking out of my sleeve, I didn’t look “ill”. It was only after I restarted treatment, when my hair started falling out and the drugs were taking their toll on my face and my body that I finally felt that I was valid of the NHS’s resources, valid of my family’s concern, valid as a cancer patient.
This lack of validation in who I am has affected my cancer journey significantly. I was one of the lucky ones – I had a “good” (often curable) cancer and I was in remission within six months. But not everyone finds the joy and relief in remission that they were expecting.
Some survivors are besieged with worry that the cancer may come back, which is why I happily took up the offer to have a bone marrow biopsy every three months.
Some survivors find ourselves haunted by the overwhelming memories of surgery, pain, illness, and bad experiences. And this is why I am undergoing trauma therapy for PTSD.
And then there’s the survivor’s guilt…
I was really shy about telling people I was in remission when I went to the day unit – I didn’t want other people to be upset that they weren’t. I didn’t mention it until someone asked, and even then, I said it quietly. I hated my last session of chemotherapy too. All the nurses and doctors were so happy for me, but I couldn’t cope; insecurity and guilt meant I struggled to even look at the rest of the people in the room. What if they don’t get their turn? How can I make a song and dance when other people are stuck in their chairs and beds?
During my treatment, Elizabeth Wurtzel, the author of Prozac Nation, died from a complication of breast cancer in January 2020. One of my favourite writers, her autobiographical work really helped me and a huge number of people verbalise and comprehend their relationship with depression.
And just after I’d finished chemotherapy, the actor Chadwick Boseman, famous for playing the awe-inspiring Black Panther in the Marvel movies, died from colorectal cancer in August 2020. He wasn’t just a talented actor, but a role-model to millions.
Their deaths hit me so much harder than I thought possible. Why did I survive? Why did I get to live, instead of them? They still had so much to give to the world. I lost nights to my thoughts, not just grieving these people, but trying to fathom why I can go on, when they can’t.
To get through these feelings, I’ve had counselling. I’ve had to accept that I’m not a cancer imposter, nor am I living on borrowed time. My status as a cancer survivor is valid, and I can’t change it. And that these horrible feelings of survivor’s guilt are valid too.
I’ve come to accept that there’s no trade-off and I can’t arrange to swap outcomes with someone I feel is more deserving. That there’s no “naughty or nice” list, no ethics committee that decides who gets to survive. That it’s down to each individual body, each type of cancer, each type of treatment. It feels so incredibly sad, that who survives comes down to chance, luck, fate or whatever you want to call it. But when your mind is wracked with guilt and shame, sometimes you have to be a realist and accept these things for what they are. And to accept that cancer is not my fault.
I’m not going to shout out loud that “I beat cancer” (that’s not the kind of person I am), but I am going to use my (validated) status as a cancer survivor to help those who are still affected by it. I’ve been trying to focus my survivor’s guilt into positive things. Enjoying time with my wife and my kids, time that I thought I’d never get again. I’m so grateful for every moment I get with them.
Raising money for charities close to my heart like Leukaemia Care, is a real motivator. Not only does it mean that they have funds to help people like me, but that I’ve contributed in a small way to their good work.
I’ve been taking part in a support group for others with APL, which has been so worthwhile: talking about our shared experiences, and hopefully those of us in remission are offering some light at the end of the tunnel for those still undergoing treatment.
But the one activity that has really helped is the easiest – simply sharing the symptoms of leukaemia in as many places as I can: Twitter, Facebook, LinkedIn, work intranet sites, casual conversations. Because if it helps one person get the early diagnosis that can save their life, then survivor’s guilt won’t be an issue.
If you’re looking for mental health support, our counselling fund provides anyone affected by a leukaemia, MDS or MPN diagnosis with a grant to access counselling. Find out more by clicking here or call 08088 010 444.
Blog post published on: 10th May 2021
Blog post last updated on: 8th October 2021