The title of this post is a little misleading as it’s not a question I’m planning to answer but it is one that I’ve read various articles about and have thought about on and off since my cancer diagnosis.
My main problem with the question and the articles it that they suggest that a cancer diagnosis turns everyone into the same person – somehow cancer makes us patients all think the same, react the same, possess a desire to be treated the same. The reality is that people with cancer are still just people and as we all know people are all very different.
My other problem is that for me – the thing that I’ve found hardest to handle is when people don’t say anything and if we fill the world with articles and debates about what one should and shouldn’t say then people are even more intimidated and even more likely to shy away from any conversation. Generally what you end up with is a list of things you shouldn’t say but nothing very helpful about what you should say. By the time you’ve remembered not to suggest you ‘know how someone feels’, or that you ‘know someone else with that cancer and, oh, whoops they died’, or one of my favourites – ‘there are worse cancers’ – the chances are you’re so tongue-tied that it’s easier to say nothing.
Since my diagnosis, there have been moments when people have said things that have upset me, but actually more often I’ve been apologised to for some terribly ‘insensitive’ remark that I hadn’t even registered! The things that have upset me are mostly not one off comments or questions it’s more likely that a conversation has travelled into a discussion of an impossibly far off future, which I’m fully aware I’m unlikely to see. These moments tend to sneak up on me – a recent memorable one was finding myself sitting in Oscar’s new secondary school and welling up at the sight of their film about all the children getting their GSCSE results and just feeling struck with how damn shit it is that this is something I’m unlikely to see. Now, this is just real life – it’s not avoidable, it’s no one’s fault it’s just the reality of the rubbish hand I’ve been dealt and so there’s no avoiding these moments and no list that will make them go away.
I can only write about what I would and wouldn’t mind someone saying to me. Personally, I’d always prefer that someone say something than nothing. In my case that’s meant listening politely to ideas and thoughts that I’m absolutely not going to indulge in but I have no problem with people suggesting. I’m not going to just eat raw veg, totally avoid sugar, live only on lemons or wear a copper bracelet to keep the cancer away and my response is usually to acknowledge the argument but point out that so far the fabulously toxic immunotherapy drugs have worked wonders for me so not planning to make any changes. However, I’ve never been bothered by the suggestions. I’m not easily upset and offended by not fully thought out remarks and on the whole assume that people probably mean well.
Depending on where I am with treatment, what my latest scans have shown and whether I’m heading in or out of a new crisis with my melanoma the ‘how are you’ question can be complicated but really it’s just a social nicety and surely I can choose how honestly I answer it at any given time? So, really I stick with what I’ve always said and that it’s better to say something than nothing and I’d hate to think that people are too scared to say anything for fear of putting their foot in it.