Post 275: Meeting expectations
I spend a lot of time on my handheld phone reading posts and replies on the Prostate section of the Macmillan online forum, and I try my best to help with other people’s queries. But more and more I find myself floored by the expectations some users bring to this otherwise marvellous platform.
I know very well how it is at the start — those early days when cancer suddenly becomes part of your life.
For me, I was TNM = T3b N0 M1b on 24/10/22, and the numbers confused the hell out of me. Like everyone else, I Googled things, but I’ve tried to be careful — to fact-check rather than seek advice from Dr Google.
Some days I feel like there’s nothing wrong with me except ageing. I still struggle to believe what’s happening inside my body.
Even though the concept of the “new me” still feels strange, and sometimes unfamiliar, I’m a realist. I try to focus on the good news rather than dwell on the bad.
So when I read posts online, I can often feel hearts breaking as people describe the status of their loved ones, or themselves. Occasionally I step in and ask the obvious questions, because better understanding often leads to better answers and more realistic advice.
But sometimes a post gets my goat — when expectations exceed reality and there seems to be no space for calm reflection or acceptance of where things truly are.
It takes all sorts, doesn’t it. That’s why discussion matters. The Champions on the forum do an amazing job, offering direct, knowledgeable and compassionate guidance. I couldn’t do what they do — I know I’m too judgemental.
I tend to form opinions quickly. That’s just how I’m wired. But I do have a heart, and I genuinely try to be helpful and positive whenever I reply. Still, there’s a limit to how much emotional weight I can carry.
Lately I’ve found myself holding my tongue, avoiding certain posts so I don’t slip into negativity. Instead, I’m choosing to focus on one or two threads I can really get behind and contribute to meaningfully.
What am I really saying?
I think my empathy is being tested, and I need to ease back from the forum I love. This isn’t a complaint about Macmillan — far from it. It’s about my own state of mind.
Years ago, when Mary Whitehouse was a regular presence on TV, she was mocked by many — including me. She stood by her morals and didn’t back down. Do we need people like that now? Perhaps we already have hundreds of them, given the vastness of the internet.
But like then, and like now, I can choose to turn over — or turn off.
It may be time for me to read when I want to, and reply less, rather than risk saying something that could be misunderstood or cause upset.
I don’t want to make things worse for people already thrust into the horrible world of cancer — a world none of us asked to join, and none of us want to stay in for long. I understand the confusion, pain and sadness. I’m living it too.
So perhaps I’ll become quieter for a while. Silent, but supportive. Cheering on the Champions who do such vital work in what has become my online universe.
My New Year’s resolution was to eat less chocolate — which didn’t last long. Maybe I need a better one.
To be more careful. More thoughtful. Kinder — to others like me, trying their best to navigate a medical world we never chose.
As Tiny Tim says in A Christmas Carol,
“God bless us, every one.”
Good night.
