Gwent women living with secondary cancer have published a book of their poetry and writings to shine a direct light on the lives of younger people living with the terminal condition.
The four writers pooled their developing talents to create Staying Alive: A Book of Hope. The book was launched by former Archbishop of Canterbury, Dr Rowan Williams, at St David’s Hospice Care, Newport with readings and a discussion.
Dramatherapist, single mother Seren Haf Grime, from Newport, diagnosed with secondary breast cancer four years ago aged 36, led the writers group and is editor of the book.
Supported by Newport-based St David’s Hospice Care and Literature Wales, Seren worked with three other creative writers with a diagnosis of secondary cancer, married mum of two, Lorraine Burroughs, 38; married mother of one, Jill Davies, fifty and married, Rachel Woods, 53.
The book is dedicated to a fourth writer, Charlene Evans, who died during the writing of the book.
Seren applied for one of the Literature Wales’ Literature and Well-being Writer Commissions. The book is the end goal of the proposed project created in partnership with St David’s Hospice Care.
Seren Haf said she hopes their book will create a deeper understanding of the lives and experiences of younger adults living with advanced cancer.
She said: “Younger adults living with cancer are often juggling young families, as I was when diagnosed, taking care of their homes and relationships while receiving chemotherapy and treatment for their long term illness. They may have to give up their careers or at least put them on hold.”
Seren, who uses dramatherapy and story to heal and empower, said: “I use creative writing and storytelling as a medium. The book contains creative writing, some of which are poems. Poetry in the title encompasses all the different literary work in the book, some which has a more defined rhythm and some more narrative.
“What unites all the work is they are an expression of feelings and ideas. Poetry, story and song lyrics offer an opportunity for people to express themselves less directly through metaphor, which often feels safer.”
Who does Seren and the other writers hope will read their book?” Cancer patients at point of diagnosis to give them hope, family members of people living with cancer to help them understand, younger women living with cancer to realise they aren’t alone with their thoughts and feelings, managers and commissioners of cancer services in the NHS and third sector to highlight the benefit of creative writing within cancer services.
“I believe that the themes covered are universal and anyone would benefit from the hope which this book instils, if you are going through a dark time.”
Seren and her group of writers self-printed an initial print run of 200 copies of the book which is now almost sold out.
“We do need further support financially. We self printed the book with part of the original funding, selling copies for £8 each. The next step is to find a publisher or sponsor in order that we can publish/print more copies so that we can share it more widely.
“We were buoyed up throughout the whole process by people’s enthusiasm and belief. That was an enormous help in keeping us going as everyone has realised the importance of providing this opportunity to do what we have done and to be able to say what we have said in the book.
“For myself it has been very important that I could demonstrate how effective and powerful this type of intervention can be for younger people living with cancer, and as a pilot project that the results are clearly beneficial and it gives a platform for possible further opportunities to others.
“My main drive was to make the project accessible whilst at the same time highlighting and giving a voice to younger people living with secondary cancer.
“Key messages we want people to take from the book are that we and others like us are full of life, we have a voice; we can overcome difficult days and times when we are validated, listened to, supported and not alone.
“There is a common collective rhetoric when people hear the words cancer, metastatic, stage four cancer, incurable cancer and it mostly involves death. We with this book aimed to challenge this idea and I’m hoping that we have gone some way to achieving this aim.
“It is important to educate people that there are many people living with cancer and secondary cancer who are fit, healthy, working, alive and making the most of life. The treatments available now mean that we can live for a very long time with this chronic illness.
“There is a lack of funding in cancer research once the cancer has metastasised, and in some cases limited treatment options. It is important to me to educate and inform people utilising universal themes that everyone can relate to.
“Together we created Staying Alive: A book of Hope sharing our experiences through creative writing to offer strength, wisdom and tenacity and share our vulnerabilities. The book will be made available to patients at point of diagnosis or news of further treatment but also a s a lesson for the wider public on how to cope with the impact of the pandemic, chronic illness and fatigue and when simultaneously facing death and staying alive.”
Seren said she and her fellow writers were pleased Dr Rowan Williams, himself a recognised published poet, agreed to launch their book. She plans to continue to work with St David’s Hospice Care in particular looking at accessible ways to support young adults.
“St David’s Hospice Care has been a sanctuary for me. I am eternally grateful to them for their support and encouragement.”
Keen horsewoman Rachel Woods said: “Living with incurable cancer is a constant dance with uncertainty, an emotional rollercoaster hoping that you remain stable preparing yourself for the day the cancer in on the move again. I hope that our poetry and writing provide you with an insight into living with advanced cancer.”
“I hope our book falls into the hands of whoever needs our words. I hope it offers some comfort that you can find strength to live a fulfilled, good life, that it inspires others to grab opportunities that come their way, you never know what will come of taking a deep breath and just going for it…. join that group, club, gym, just do it the time is now!”
Jill Davies said: “I have always loved writing and poetry so being able to contribute to this book fulfils a dream for me. The creative writing group allowed me to voice my feelings in a safe environment, enabling expression of emotions, thoughts and fears. And I made some lovely new friends.”
Speech therapist Lorraine Burroughs said: “I’ve never written creatively but have embraced this opportunity and have benefited greatly. Some take home messages from me are to be kind to yourself, rest when you need to, eat when you feel able and hold your loved ones that little bit longer, enjoy spending time together be in the moment. House work and chores can wait.”
Dr Williams, who signed the books along with the writers described it as including ‘very powerful, honest writing’ saying it shows ‘it’s not about winning and losing, it’s about living.”
Emma Saysell, Chief Executive of St David’s Hospice Care said: “This is a wonderful book which I urge everyone to read. It’s a book which we will keep at the hospice and also distribute for sale in some of our shops and day hospices. The book can also be obtained by calling the hospice. The messages and feelings contained in its pages are so real, compelling and so strong.
“I have to say that even professionals in the field often don’t fully understand really what people with cancer are going through as they haven’t the actual experience of having the disease. I believe this book is a must read for all health professionals especially those that are involved in the field of cancer, hospice care, palliative care and are health care professionals.
“Sadly, we can all fall into a trap of repeating words and phrases that are at best unhelpful and worse demonstrate a lack of knowledge of what people with cancer, especially younger people such as the writers of this book, experience and how they want and need to be treated by the people they meet in their everyday lives.”
The book is £8. It can be obtained by visiting creativewritingwithseren@gmail.com. The money is being shared between three charities: St David’s Hospice Care, Velindre Hospital and Secondary1st; https://www.secondary1st.org.uk/
Seren Haf Grime worked as a dramatherapist in the NHS for ten years, utilizing the power of story to heal and empower diverse clients with a range or presentations. Seren is a co-founder and performer with The Golden Thread playback theatre company. Playback is a form of improvised, devised theatre which utilises metaphor, story, poetry and music to tell the stories of communities without a voice.
Four years ago, Seren was diagnosed with secondary breast cancer at the age of 36 and has spent the past year shielding with a young child as a single parent.
