One of the first thoughts I had, when they told me Beany had cancer, was that she was going to die. That I was going to lose my child, the funny little thing that had struggled so much over her short little life.
My second thought, much later, once the initial panic has subsided (and I was no longer going to pass out) was that it was my fault. I confessed as much to my sister in the car the next morning, with my ten-year-old niece behind me squeezing my shoulder as I sobbed. A ridiculous notion really; hepatoblastoma is rare enough that only ten children a year in the UK are diagnosed with it. No one knows what causes it beyond it being a genetic fluke. It happens. It’s not like she has lung cancer from my second-hand smoking (I don’t smoke) or that my wife drank while she was pregnant (she doesn’t drink).
It just happens. It happened. To our kid.
But it’s hard not to blame yourself for it, and for every little thing that then happens.
I suffer from Intrusive thoughts as well as the usual parental guilt. It’s not been an easy ride for my brain.
I’ve struggled with intrusive thoughts for as long as I can remember. It’s part of my OCD. I’ve always lived more in my head than anywhere else since I was a child. I’ve always let my imagination run over time and still do. It’s a coping mechanism more than anything else, I think.
The intrusive thoughts cause me nothing but pain, they range from just the sad to the violent. They’re unpleasant and sometimes I have a physical reaction. Sometimes I shiver or have to shake my head as if I can force the thought away. On occasion, I even retch a little. I am even reduced to tears sometimes too.
None of this is voluntary, these thoughts are forced upon me by my own brain.
Since my eldest was born, pretty much 99% of my intrusive thoughts are focused on the kids. They’re the worst they’ve ever been in the way they make me feel (so, very bad about myself) and the content. I would never hurt them, I love them, but I’m not in control of those thoughts. They’re not my thoughts, it’s like they’re someone else’s, put inside my head to make me suffer.
While I’ve never had intrusive thoughts about my kids getting cancer in particular, I’ve had thoughts about them dying, being hurt, being ill many times. I felt like it was more fault, because of my thoughts. When I told my sister, she said she had the same problem with intrusive thoughts.
I don’t know if that made me feel better or worse. Only that we both struggle with the same mental health problems to varying degrees does not surprise me nor comfort me. I love her of course.
It did make me feel less like I was to blame for my child getting a completely random chance cancer.
Parental guilt sets in as soon as kids are conceived, I swear, and only builds from there.
When your kid gets cancer, you feel guilty about everything. Not just in terms of their health but everything. You feel guilty over the normal stuff, like everyone else; screen time, sweets, sleep, playtime but then there are added elements to those too. Too much screentime? Or too little? She’s terribly ill after all. The doctors say she’s got to have extra calories, as much as she can eat, but is it too much after all, and then you have your eldest feeling left out when they don’t get the same.
Are they spending too much time asleep? Even though they’re ill or not enough and not healing. Are the infections your fault? Could you be doing more to keep her safe, healthy, healing? Did you do the right thing agreeing to put her in a clinical trial? Is surgery the right thing? Did you give her all her medication? The right amount? Were you late for an appointment that could change everything? Should you move house? Be closer to the hospital
for treatment. Is it your fault for not pushing at the first GP appointment, the A&E visit, would this have been an easier journey, an easier fix if you had pushed?
It’s all questions with no answers, leaving you with the weight of responsibility that can be crushing. And her entire health isn’t something you can control, it’s something you are involved in certainly, but so much is beyond your ability to prevent and to fix.
I could not prevent her liver cancer. I cannot fix her liver cancer. I have to give the control of that over to doctors. It makes it harder to shake the parental guilt you always live with when you have kids. Makes it harder to shake it off and live. Enjoy.
So where does this leave me? Medicated and managing. My mental health is lifelong but changes, some things are consistent but some vary. Perhaps in time my intrusive thoughts will change, shift onto something else but I doubt it. Perhaps I’ll get some real mental health support and I will be able to be free of them. Eventually, my children will grow up but I doubt that will change the parental guilt. In time though, Beany should recover, from her cancer, her transplant and that will be one less thing to feel guilty about.