CW: Cancer talk.

I’m not a big fan of Facebook – in fact, you couldn’t even call me a small fan – but I am part of the private group of New Zealand myeloma patients on FB, and it’s the ideal home for us.

We do a lot of helpful sharing on how we are. People ask a lot of questions and get them answered. Some of the people are the children of older patients with myeloma, who they are caring for.

People have so much knowledge they can share, and making the group ‘private’ lets them do that in a safe space. And the old hands can encourage and reassure newly diagnosed people. There is a lot of fear when you are diagnosed with an incurable disease, and being able to communicate with people who have been sick for many years but might still be living very active lives (as I was for over six years before I relapsed) can be very encouraging. Everyone’s experience of illness is different, and doctors tend to talk in general terms or averages.

At the moment, there is a small group of patients who have just started on a newly-funded drug (pomalidomide) and we’re sharing our experiences. It’s very encouraging and helpful to know you aren’t alone.

The emotional response to illness seems to be the hardest to manage, and it’s good to have fellow travellers alongside you.

It’s one of the few things – other than a couple of local community pages – that I used on FB. I would be happier if I could avoid FB, but beggars can’t be choosers (as my old Dad used to say).