Thousands of pounds are invested in cancer charities promoting better support for people with cancer and encouraging people to “be there” for them. To a degree it’s been successful although when I was stage 3 (and I was still in the cancer can be cured club), the best support came from women in the same boat as me.
Now though, my support pool has got much much smaller. Since my stage 4 diagnosis I find myself with less support and lonelier than ever. Many of my stage 3 friends don’t check in anymore. In actual fact I bit my tongue for so long and today my tongue got the better of me. (Surprise surprise). I had a moan on social media. Maybe with hindsight that was a mistake but I didn’t just do it for me, I did it for the future. For every woman living with terminal breast cancer. For everyone with a stage 4 diagnosis in fact.
My post went something like this:
I’m sad because people I consider friends read my blog and clearly see that I’m suffering yet say nothing. Not just read one post or two but months go by and not even a “how you doing.” Sometimes the silence is deafening. It’s very lonely knowing I’m going to die and people seemingly don’t want to know. “But we think about you.” Ok thank you for thinking of me, but next time if you let me know that would be great!
I think I’m articulate enough to be able to have a moan without resorting to blaming people or being nasty. Yet still I received defensive responses back. Again I find myself astonished that this is no longer about how I feel it’s now about how others feel or how my comments have made them feel. Kind of evident from below…
“I make no apologies for not commenting.” Ok… I actually don’t invite blog comments by the way, I just welcome support.
“You shouldn’t get upset over this with all you have going on.” Ok thank you.
“Maybe your blog makes people anxious.” I understand that it’s scary but you don’t have to read it.
So where did expressing myself today get me? Absolutely nowhere. In actual fact it’s made me feel worse and more alone than ever!
So what gives?
Do I seek support from others with terminal cancer only? Or do I suffer in silence? It’s certainly a hard lesson to learn today. People can dress it up how they want to, or make excuses, but how I’m feeling is real, and I’m sure I’m not alone in feeling this way.
Stage 4 is like a contagious disease to people and you become the child nobody wants to be friends with in the playground. Nearly everybody runs away from you, and asking how you are is now very scary because everybody knows your inevitable fate. Your breast cancer buddies understandably want to move on from breast cancer and having a friend with mets is petrifying I know because I’ve been there. I’ve lost people and I too am guilty of shying away from people.
Is there even a right or wrong here? How can we change attitudes in years to come? 12 thousand women die every year of breast cancer. I’ll bet a lot of them felt very alone during their last years. Is that we want for the future? Women dying and feeling sad and alone?
The bottom line is there’s not enough support for stage 4, and if you moan about it you’ll probably be faced with some cold-hearted responses.
For now though it’s a case of suck it up buttercup…
(Or the delete friend option)..