This week, my mum celebrated her birthday. So did one of my former uni housemates. My sister won ‘Musician of the Year’ at her school concert. Another housemate went to a funeral. All a mixed bag of occurrences that make up part of real life. But I wasn’t there to give anyone a congratulatory or commiserating hug. Because, if you break it down to numbers on a computer screen, my immune system doesn’t exist, currently, thanks to my latest round of chemo, which I’m slowly getting over.
My point is that, with missing all of these occasions, good or bad, came the guilt. I don’t need anyone to pop up and tell me that feeling guilty for having cancer is irrational. I definitely don’t need that. But I’m a worrier. Always have been. And now when I have people congratulating me on being a ‘warrior’ instead of the neurotic kind, I often feel guilty. Because I’m not brave, or smart, or particularly strong. I spend a lot of time in bed, and I do what I’m told, because I don’t have a choice.
But no one warns you about the guilt that comes with cancer. There’s some that’s expected, survivor’s guilt being one of them. How come I get to have a decent prognosis when so many other people have it bad from the start? How come I get a disease that is potentially life threatening and people don’t just expect me to die? So many people don’t get that luxury. But then there’s all the complicated, blurry types of guilt that you don’t expect. Guilt that isn’t as easy to define.
There’s guilt about your lifestyle. Is it my fault that I’m here? Indeed, pinpointing a reason for a diagnosis and an illness is an attractive line of thinking. That’s what we’re conditioned to think: cause and effect.
“Don’t smoke, because you’ll get lung cancer. Don’t cross the road without looking, because you’ll get run over. Don’t vote for that party, because they’ll put your taxes too high, or not high enough”.
We are used to having somebody to blame, even if that somebody is ourselves. Even though cancer isn’t about logic. It’s about bad timing and crappy coincidences that lead to self-doubt.
So was my decision to return to uni and attempt third year as if nothing had happened the root of the reason I’m here now? If I had stayed, and cracked on with a donor and a transplant, and remained under the watchful eyes of my medical team here, would I be better off now? Would I be well on the way to recovery? Or would the leukaemia have got to me first, anyway?
Should I feel guilty about pushing my doctor into the decision to let me live a normal life?
I know, of course, that the answer is no. That the answer will never be as simple as a series of checkboxes as to what is and isn’t someone else’s fault. But remembering that has proven to be very hard work.
There’s more, too. There’s the complicated moment when the guilt gets mixed in with the bitterness. One of my doctors came into my room this week, and in between chatting, he was having a good look at all the pictures and cards I’ve got pinned up on my board. I like to decorate, seeing as I’m here for a while, and for a moment I was glad that he was looking. I wanted him to see my formerly carefree life. I wanted, I think, some kind of validation, some kind of acknowledgement that I’d had a life, that I hadn’t always been a cancer patient. I wanted them to see everything that they’d taken away from me, because I was angry about it.
But the guilt follows the fleeting anger, too, you see, because of course it’s not their fault, either, that I’m here. They’re just trying to make me better. But as I say, it’s hard to remember that sometimes.
Guilt has followed me from the moment I got diagnosed. People messaging me, some feeling guilty purely for being well when I am not, some for not knowing what to say in a situation where there is no precedent, no handbook, no right answer.
Guilt has hung in the air since I first made the decision to be open about the whole I-have-a-disease issue on social media. Am I doing the right thing? Should I be hiding this new part of my life? Or would that be denial to the furthest extreme? Is every Facebook like and every sympathy message a form of self-fulfilment in the midst of all this madness? Am I being selfish by shoving it down people’s throats, laying myself bare for people I haven’t seen for years to read?
But I think the worst part is the guilt that you yourself can’t even understand, and that’s the guilt for being glad sometimes. I would never wish cancer on my worst enemy, but sometimes, alternatively, I almost feel glad that it’s me, and no one else I know. Despite what I let myself think, I am strong enough to do this, when people that I know aren’t. My brother couldn’t handle the needles. My sister couldn’t swallow all the pills. A close friend told me that “I just wouldn’t be able to cope with losing my hair”, and yet here I am, coolly adjusting to my reflection in a hat, and not losing sleep over it.
But then, does that mean there’s something wrong with me? Who would be glad that they had cancer? Because I’m not glad.
I’m just… what? Proud of myself? Confused? Glad I’m able to protect people I love from it by having it myself? God knows.
You expect the guilt that comes from your family giving up their lives to care for you, and even for having to ring a nurse one too many times because you’ve got another urine sample for them to analyse. But you don’t anticipate the guilt about the disproportionate amount of attention that you receive when you’re surrounded by people who deserve attention for real achievements, or the shame you feel for resenting your friends whilst they’re deciding where they’re going on holiday this year.
“It’s not fair” is the most childish sentiment that’s crossed my mind since all this started, and it’s also, frankly, the biggest waste of time. But sometimes it feels like there isn’t enough room in my head to feel guilty over that, too.
Wow Alice you continue to amaze and inspire us. To be able to articulate so powerfully the intensity and complexity of how you feel whilst enduring such awful treatment is so moving. Don’t underestimate the impact you have by sharing your innermost thoughts. Sending love and strength xx
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