I am part of an online forum for people affected by bowel cancer. It has been monumentally helpful to me in terms of support and learning about the intricacies of the disease; there are no better teachers than those who are on the same path as you. People who have just been diagnosed arrive in the group and my heart breaks recognising the shock, confusion, and terror of what has landed in their lives. When I think back to the weeks of Greg’s multiple A&E visits and eventual diagnosis, it makes me feel physically ill, although my brain has had the sense to erase a lot of the detail for self-preservation.
This group of strangers congregate in the digital ether to keep each other company on this dark ghost train. These people are constantly on my mind, my brain showing a split screen watching us all going about our daily lives. They come together to bond like a family and speak in a way that they can’t to loved ones around them. There is an unspoken knowledge that everyone will understand you; little needs to be explained as they are also stumbling around in their own lives. There are no pointless platitudes here.
I avoided these forums for a long time because there are some harrowing home truths to digest but I am now obsessively reading about these people’s lives. I feel genuinely elated when there are good scan results and cry when the news is bad.
I am drawn to those in the same situation as me; female partners to stage 4 cancer patients with young children. In these people, I find a particular kinship. We quietly email in the night, exposing our deepest fears because we know they are lying in the dark feeling the same. We discuss how hard it is to look after so many people and how depressing it is when people comment, “oh you’ve paid off your mortgage? That’s my goal!” when the only reason you have is because your life insurers believe your partner is about to die. We also talk about taking the kids to soft play or an amazing restaurant we went to. The mundane in amongst the excruciating. These strangers understand the jump between the two and the need for them both to exist simultaneously.
Sometimes I feel tortured by it – ingesting so much pain and despair from others is a bit like being poisoned, especially when you are already so full of your own terror. But I return to the pain, like an addict, because no one else understands me in the same way. I know a lot of people who have experienced trauma and tragedy in their lives but no one who personally knows how this feels and what an exceptionally lonely place it is.
Recently, I woke up to an email from a new friend in the group to tell me her husband had died in the night. I have never met her but I began to plot how I could drive to Essex to sit with her. I’m sure she wouldn’t want a stranger around at her darkest moment but the desire to just be there was overwhelming.
The Internet can become a scary place when bombshells like this explode into your inbox. There is also an intricate dance to learn during cancer treatment research; gather the important facts but blindly weave past the terrifying statistics. Through minutes that turn into hours on my computer, I am so desperate to read the right thing, to give me hope, to find THE treatment that will make all this disappear.
Despite these minefields, the Internet has helped me in so many ways over the past year. How would I have ever known about the science nonsense like Lynch Syndrome testing or how to search for international drug trials? What I didn’t realise about cancer treatment is that so much of it is at the patients’ discretion; you are presented with the options, side effects, and statistics but then expected to decide which one to choose. Having an elephant sit on your chest would be less pressure than these choices. How did people research illness before the Internet? Cut to the 1980’s in the Heale household – my mum is wielding the ‘Family Doctor’ tome where you follow a flow chart of symptoms until, more often than not, you ended up at ‘death’, despite only having a cough. Prognosis isn’t so different now despite very different means of researching; Dr Google is a cruel mistress at the best of times.
I have just turned up incredibly late to the Instagram party and revel in the mindless joy of looking at my personal preferences of eye candy – interior decoration, gothic fashion, makeup tutorials and dogs in clothes. It’s such a light relief from my usual Internet navigation…‘what is the application process for getting stereotactic ablation on the NHS? Can Herceptin be used for colorectal cancers if patient tests positive for HER-2?’ and other jolly Google searches.
While Greg and I were hibernating in a six-month chemo bubble, the messages we received through social media left us feeling dizzy. It is an amazing thing to be able to ping a photo of a dancing cat across from the other side of the world or a quick message to say someone is thinking of you as they drink their morning coffee.
I don’t think I’m adding anything new to a conversation about the Internet when I say it’s a double-edged sword. It can be an emotional vampire but I still need to watch videos of people doing amazing manicures and how to do the perfect liquid cat flick.