When my mother Janet was diagnosed with the brain tumour that eventually took her life, I was terrified. Like the rest of my family, I had experienced nothing like it.
We didn’t know what to do, what to think, how to support mum and her partner and each other.
Somehow, a brain tumour felt different from any other kind of cancer. I felt overwhelmingly that other people didn’t understand.
Things began to change after mum’s clinical liaison nurse suggested we go to one of The Brain Tumour Charity’s Information Days.
The Brain Tumour Charity’s Facebook support group was mentioned on that day and I signed up straight away. It felt like a natural thing to do as I’ve used Facebook a lot over the years for a number of things.
Even so, I wasn’t entirely sure what to expect from this type of closed group, which you can’t join without asking the charity first.
What I found was a group of people who just got it.
There are so many types of brain tumour but the one uniting fact about the Facebook support group was that everyone was there because of a brain tumour – whether their own or someone else’s.
For some people who are going through tough life experiences, posting publicly on Facebook seems to help.
But for me, it felt totally inappropriate. The idea of people who didn’t know mum and weren’t really my friends, just people I’d met once on holiday and the like, telling me everything would be ok and they were thinking about me, filled me with horror.
Having a closed group with people going through the same experiences – although they might be at a different stage from me – somehow felt more genuine.
I was having telephone counselling once a week but the support group was different.
I could vent off when I was angry, share when I was sad and tearful and this group was always there. It didn’t seem to matter what time of day or night, there was almost always someone online happy to chat.
My support network is amazing, but they can’t be by your side 24/7 and you never know when the emotions are going to hit, so having the group there on the computer was very reassuring.
Now, a year and seven months on from mum’s death, I’m still using the group regularly. I hope I can give something back in return for what it’s given me, and that I can help people who are just beginning a journey that none of us should have to take.
Join our community on Facebook
Our closed Facebook groups are a great place to connect with other people affected by a brain tumour and share your experiences.