I first got involved with Macmillan through fundraising, via groups in London, Romford, and Ilford.
I then became involved in user involvement type activities, using my cancer experiences to improve the experiences of others.
I am part of a taskforce, which consists of a network of patients, carers, friends, family and professionals examining the unmet needs of LGBT people affected by cancer. We make suggestions for changes which will have a positive impact on the experiences of LGBT people who experience cancer. For example, we reviewing cancer information and make suggestions to make it more inclusive in terms of acknowledging different sexualities and gender identities.
I feel I have multiple perspectives to bring to the taskforce work, such as age, sexuality, and ethnicity – I have a cross section of views that I can contribute. I believe that you need to have people who have been affected by cancer participating as that’s where your bedrock is. The knowledge comes with that experience, you need to know what people have been through to identify what will be a good support for them.
We also attended an event where we took the stories that people affected by cancer have shared with us - from all backgrounds and communities - and then applied a code to the themes that are in these stories so that the results can be numerically evaluated, compared and analysed. I found that I had a knack for this, a hidden talent, and I really enjoyed that creative side.
Through this work, I have been able to meet new friends, which has helped me realise that I am not alone. I've also gained a wealth of information about coping during difficult times - even now that I am in remission. I have been able to share my experience with like-minded people rather than being alone and have really enjoyed the inclusivity (in every sense) of the taskforce group.
When I had my first diagnosis, I was very scared and I felt like the world had come to an end. I always remember my Macmillan Nurse, touching me in a soft, comforting way and saying, 'I am here to help you live,' and this gave me so much strength. When I was saying 'No, I can't,' she would tell me 'Yes, you can.'
Once I was in remission I decided to use every chance I got to give back.