To help raise awareness of breast cancer during Breast Cancer Awareness month, British Journal of Family Medicine editor Rob Mair spoke to oncology nurse and author Alison Bailey about her new book, One Step at a Time.
“I would like it if the book was there with all the other bits of literature in GP's surgeries, and I would love it if GPs told their patients to try and have a read of it, because it is now a whole different ball game if you’re diagnosed compared to 30 or 40 years ago.”
Drawing on her near 25 years’ experience, Alison Bailey can tell you all you need to know about chemotherapy and breast cancer. And, having cared for thousands of women, she knows what matters when it comes to their concerns. But, by her own admission, she can’t tell you what receiving cancer treatment is really like. The only experts in this scenario are those men and women dealing with the diagnosis – and that what led to Alison writing One Step at a Time.
Using questionnaires to gauge women’s feelings on cancer, Alison was surprised at the detail she got back from women, who were willing to share their experiences freely. “These women wrote at huge length,” she says. “And it can all be used as a reference; What do you say to your children, what do you say to your family, what food helps, what food didn’t. All of that was based on what women had written and they have been unbelievably frank and honest about the good things and the bad things. A lot of them were very upbeat, which is great.”
While openness and frankness led to many emotional outpourings, one of the biggest challenges Alison faced was reconciling the personal nature of the testimonies with writing a book that could stand up to clinical scrutiny.
“Although it’s not a clinical piece of work, it had to be clinically correct,” says Alison. “We wanted to give people an idea of what to expect if they were diagnosed with breast cancer, and that there was a whole array of handy hints available to them, and psychological support.
“But, if you’re writing about neutropenia, for example, then you have to explain it too. So I had a glossary that my consultant, Dr Ellen Copson, wrote for me, but then I could include hints like, if you’re going in for chemotherapy, make sure you bring an overnight bag, just in case you’re neutropenic and have to stay in.”
And, to bring things full circle, Alison has found that by collecting the anecdotes it has helped her improve the care she provides to her patients: “As the years have gone by and I’ve had the questionnaires back, I’ve found myself saying, ‘oh, why don’t you try this?’ I found myself regurgitating what these women had written.
“No-one knows better than the people who are actually having it.”
Now, for Alison the aim is to make sure every woman who is going through chemotherapy has access to the book. “Ultimately I’d like the book to be given to every lady who has to have chemotherapy for breast cancer as part of the care. I want it to be given to them free with their care. That’s the ultimate goal.
“It’s not a huge big tome. It’s a handy size that you can pop in your handbag or keep by your bed and it’s 25,000 words. It’s not huge.”
Alison Bailey is a cancer specialist nurse at King Edward Vii’s Hospital, London [http://www.kingedwardvii.co.uk/services/king-edward-viis-centres-of-excellence-breast-health-centre]
‘One Step at a Time’ is published by Filament Publishing and available to retailers in 220 countries and Amazon UK. Priced at £9.99.