One of our book reviewers, Janet, talks about her cancer journey and why she enjoys helping to produce Macmillan’s cancer information. All of the information Macmillan writes is read and reviewed by people affected by cancer, to ensure that it’s clear, accessible and relevant to people’s experiences.
Hello. My name is Janet and I was diagnosed with both breast cancer and colorectal cancer in 2004. Not the best way to celebrate being 50 but happily I’m now in remission for both and getting on with the rest of my life. Getting the ‘all clear’ is wonderful but one thing I had, in common with everyone else I know who has experienced cancer, is a feeling of insecurity when treatment is finished and you’re sent off into the big wide world without the safety net of the regular hospital visits.
I had lots of support from my Macmillan nurse during my treatment and she encouraged me to join a local cancer support group, held monthly in the day centre at the local hospice. She attends as many meetings as possible and someone from the hospice is always there so, although it’s a patient-led support group, there is always advice and help if needed.
After a couple of years I started to feel that, although I still enjoy going to the group and meeting the close friends I’ve made there, it wasn’t quite enough for me and it was time to start fighting back.
Again with gentle encouragement from my Macmillan nurse, I joined the Northern Lincolnshire & Goole Patient Involvement Group, which has a very active role in working with health professionals to improve and be involved in local cancer services. Through this I attend local cancer board meetings, palliative care updates and internal validation of the local cancer service amongst many other things.
We have been lucky enough to get a grant from the Big Lottery Fund to enable us to put on four survivorship open days in the local area over the next year. We will have stalls giving information and support to all who have been affected by cancer, as a patient, carer, family or friend. We’ll have health professionals there and the opportunity for people to have a private chat if needed. We also intend to hold two training workshops on the early awareness of cancer symptoms for people who work closely with others e.g. hairdressers, sports trainers, beauticians and care home workers. None of this would be possible without the great support we have from our wonderful health professionals.
I registered as a Macmillan Cancer Voice and get regular email alerts so I can select the opportunities I am interested in. I can be involved as much or as little as I want. I particularly like reviewing information leaflets as I can do that when it suits me and it fits in easily with everything else going on in my life. I’m the sort of person who needs to know exactly what to expect with any illness and treatment and Macmillan’s cancer information always seemed so clear and relevant. Now I know that’s because the patients have such an important role to play in putting the information together.
No specific skills are needed for reviewing, except the ability to read it all thoroughly and comment on things that I don’t understand or isn’t explained clearly. After all, if I don’t understand it, why would anyone else?
So what am I doing next? I’m undertaking a Community Cancer Champion training course, finding out up-to-date information about the early signs and symptoms of cancer and spreading the word to friends, family, and work colleagues.
I’m also sending off my application to start training to be a volunteer in the new UCH Macmillan Cancer Centre which is going to be set up at my local hospital. (You can read more about this wonderful cancer centre on the blog With you, when you need us.) I sit on the steering group for the centre, so have been involved right from the early planning stages. That will mean a few hours a week helping newly diagnosed cancer patients access the information which is specific to their own needs, making them a much needed cup of tea and lending an understanding ear if they want someone to talk to. Not everyone has access to, or is able to use the internet and we will be able to do that for them, if needed.
Our local Macmillan Information and Support Manager, Sue, is working so hard to get these centres in the hospitals in my area and the importance of good, clear, relevant booklets and leaflets cannot be stressed enough.
The best way to achieve this is for cancer patients to be involved in reviewing the publications and making sure that they are easy to understand, free of technical jargon, and fully explain their subject. I know from past experience that my comments have been listened to and amendments made to the publications so I know the patient voice is seen by Macmillan as extremely important. Why not give it a go and add your own voice?
To find out more about becoming a book reviewer and helping us produce clear, relevant cancer information, email reviewing@macmillan.org.uk
