Daloni on using the Online Community

Daloni sits on a sofa using her tablet.
Daloni sits on a sofa using her tablet.

When Daloni was diagnosed with a rare and aggressive form of womb cancer, she had lots of questions about this type of cancer, as well as what to expect from the treatment.

When she came across Macmillan's Online Community, she found answers from a warm and welcoming group, who had first-hand experience of all that lay ahead.

Daloni's story

I was researching online how I was going to feel, what my experience would be like, and I came across the Macmillan Online Community. I joined the womb cancer support group there. The difference between the Online Community and the advice you receive from healthcare professionals is that these are lived experiences – these are people who have been there, done that and know exactly how you feel. They could tell me that there was going to be a pattern to this, that that there were some things that I could do to plan my life. Suddenly I saw that my life didn’t need to be completely out of control.

As you can imagine there are some fairly difficult treatments that we have to go through, and some fairly difficult surgeries and examinations. These are things that are really difficult to talk about, but we could discuss absolutely anything. You can only talk to women about women things. You know, you don’t talk to your partner about your smear test. You talk to your girlfriends about it. We talk about intimate things that it’s almost impossible to talk about with someone who isn’t going through this. I found women who had gone through very similar experiences to me and were now two years down the line saying 'I'm alive.' It was like a huge weight had been taken off my shoulders to discover these women out there living normal lives, who had got back to living life, at a time when I was really very frightened about the future.

We all know that aspects of this are difficult. We all know that there are aspects that we simply don't want to do, but we need to, and we encourage each other and look after each other. I really didn’t understand before how warm and embracing a virtual hug can be. You might think it would be better to have someone there giving you a cuddle, but the reality is that the people who really understand you are all over the country. They’re in rural Scotland, at the bottom of Cornwall, in the middle of Manchester.

The Online Community is very well supported. It has clear guidelines and very effective moderation, and it’s run by a group of people who live and breathe it and make sure it's a safe place. Fear can happen at any time of day. I think the thing about fear is it happens at any time of day and it particularly happens at night. One of the really great things about the Online Community is that there’s always somebody there, 24/7. I never imagined I’d find this level of support on the internet. I was a little bit skeptical before I started and now I am a complete convert.

It’s become clear to me over the last couple of years just what the Community means to people. It’s a place where we can share our experiences. Where nobody judges us. We don’t have to preface things – we can assume that people understand because we all know what it’s like. We all know how frightening it is. We know how undignified it can be. Sometimes all you need to do is say 'I’m scared,' and sometimes that’s really hard to say to family and friends because they are scared for you. The piece of shared experience that was most useful for me was somebody with a very similar diagnosis, saying 'I’m still here,' three years on.

It was like sitting in the dark and the light came on.