She was forty-five when she died. She had three children, a husband and a love for gardening. She also was a voracious tweeter. She seemed to be open and honest in her experience, often the tweets came across as her talking aloud to herself. She didn’t mind if people were listening.
Then I read a linked piece in the article by Emma Gilbey Keller who slammed Lisa in The Guardian, suggesting that she not talk about cancer so much and instead be stoic and private. You can read the incredibly bitchy piece here. Emma’s husband then wrote a follow up piece in The New York Times, softer but reiterating the same message. ‘Shut up and deal.’
Perhaps this is an American versus English approach to death
Perhaps Emma and her husband aren’t very compassionate.
Perhaps they don’t understand what it to say goodbye to their eight year old child, forever.
I haven’t kept my father’s or brother’s cancer diagnosis a secret. In fact, I have been very active on Facebook (on my private page) about what is going on with treatment and setbacks and wins. There are a few reasons for this:
1) My brother’s oldest childhood friend lives in London and wants updates.
2) Those friends and family who are nearer but respectful of the gravity of the situation want informed want updates but don’t want to intrude
3) Sometimes I need to process the situation and I do this best with words. (I have kept a diary since I was twelve.)
4) I wanted to remember how we faced each day and see how amazing we all were; him, the Doctors Julian, Joel, Gen, Josh, Simon and Andrew, the Nurses Kat, Katy, Lisa, Jo, Baccara (named after the band!), Emma, Casey, and many more. My family, me, him, the lady in the cafe who made his coffee the way he liked, Nick, who made him milo every night on the ward, my newly widowed mother who sat with him and wiped his newly shaved head clean, my mum’s friends Sue, Ros and Barb, who cooked for him and visited him, his friends, the doctors, the nurses, him, and on and on it goes.
When someone has cancer its effect spreads across the web of the loved ones tied to the person who is housing this malformed bunch of cells. The primary carer for Fred has been me, with Dave and the kids as my pit crew. To prove it, I now have calloused on my hand from clutching the steering wheel with stress, as I drove to the hospital each day.
When people asked me what they could do after the diagnosis of Fred and Dad’s death (both happened on the same day), I told them upfront Fred needed money. He gave what money he had towards Dad’s funeral expenses. His Centrelink payments only went through about a month ago and his application for his income protection is still being processed. Every single form had to be signed by some of the busiest doctors int he hospital, reports to be filled, faxed and so on.
Everything took time. He needed money for medicine, the cafe (as the food was beyond bad), his phone bill and car loan. he needed supplies like new clothes and slippers and bedding. Everything he had is three hours away at his former home.
I wrote about it because he needed help and so did I. It was simple. I also didn’t write about a lot of the really awful times because they were just a bad day. Some of them were really fucking bad, for the record.
When Belle Gibson claimed she had cancer and cured herself with healthy food, and now those claims are in dispute and her reputation in ill repute (yep, I rhymed!) I responded badly to the news. I blogged about it and railed against her on Twitter. I am sure some rolled their eyes but this is my right, yes?
My brother is the toughest man I know and yet, he said, if his cancer hadn’t gone this last round, and he had to have another round of treatment, he wasn’t sure he could do it again. That’s how bad the treatment is for cancer.
That’s how much it takes to rid the body of these wild cells. A kale and quinoa cake with a pressed juice chaser isn’t going to even touch the sides of this baby.
You cannot underestimate how hard it is to beat cancer and how hard everyone tries to help. This is why you can’t pretend that you have it, and diminish the experience for others.
You also don’t have a right to shit on anything anyone else writes about their cancer experience. Not the patient, or the carer.
The question that Fred asked many times after so many people donated money to his fund, as doctors were pushing the boat out for his treatment, as I sat there most days bringing in food and washing and company, as his best friends drive an hour and a half each way to sit with him in chemo as it made him anxious, as my kids text him and called him with news and inclusion while he was in isolation, as my sister drove six hours so he could see his dog for twenty minutes, was – Am I worth it?
I told him he was a sure thing even though the doctors weren’t sure they could run ahead of this rampant beast. Every dollar donated increased his self-worth. Every chicken foccacia and bottle of Coke after a lumbar puncture told him he was worth it, each time a friend rubbed his feet as he was filled with poison, each time his phone beeped with a new message.
“Of course you are worth it,” the doctor said. ‘This treatment is worth nearly $30o,ooo, you’re a long-term investment.’
How you respond to a situation is your choice. You don’t have a right to tell someone to stop talking about it, instead stop listening, don’t tune in, or read the updates, or even ask.
That’s your right and it doesn’t make you a bad person. Sometimes things happen to other people that triggers an imbalance in your mental health. Sometimes it’s too raw and real, and sometimes it’s just all too much.
And that’s okay. It’s all okay. Be kind and be real!