The Belfast radiographer who is helping to shape cancer treatments after her own diagnosis
Radiographer Margaret Grayson, from Belfast, spent her career caring for those with cancer, but says being diagnosed with the disease gave her a different and valuable perspective. Now, she’s helping to shape treatments, she tells Stephanie Bell
After devoting her life to caring for cancer patients as a therapy radiographer, Margaret Grayson had an epiphany when she found herself a patient in her own department.
The gruelling surgery, chemotherapy and radiotherapy treatment she faced after a breast cancer diagnosis at the age of 54 left her with a renewed appreciation of just how crucial research is to saving lives.
And it's one of the reasons why, since her retirement nine years ago, she has devoted her time to pioneering patient involvement in cancer research, helping to shape treatments and approaches by medical teams both here and across the UK.
Margaret represents Northern Ireland on numerous UK-wide research committees and steering groups, but it is as chair of the NI Cancer Research Consumer Forum (NICRCF) where she has really helped to make a difference.
She has been chairperson of NICRCF since it was established in 2011. It is made up of people who have experience of cancer and who meet regularly with researchers to provide vital input into services and treatments for patients.
Since retiring after 39 years working in the Belfast Cancer Centre, Margaret is busier than ever, working with healthcare professionals and scientists and influencing Personal and Public Involvement (PPI) at local and national levels.
She has won several awards in recognition of her work and last month was again honoured for her contribution to cancer research when presented with an MBE by Prince William.
A strong voice for patients, she says her own diagnosis, the tragic loss of her young niece to cancer, as well as the death of six friends who went through treatment with her, have made her passionate about her work now in research.
"Firstly, I want to give something back for the treatment I received when diagnosed with breast cancer in 2004," she explains. "I realised that the technique for my surgery, chemotherapy, radiotherapy and continuing hormone therapy, was down to research. Other patients had taken part in a clinical trial to enable my treatment and I would like to thank them all.
"Secondly, I met seven other patients in the chemo unit who were all diagnosed with breast cancer at the same time as me and we became close friends.
"Sadly, I have been to six funerals. I want a situation where seven friends meet in 2019 and beyond, who will remain friends for longer than five years. Only research can make this happen.
"My third reason is the memory of sitting with my niece and her young husband, back in 2000, as she said goodbye to her 18-month-old baby boy.
"She was only 32 and she died from non-Hodgkin's lymphoma. I sat with her and her husband as she cradled her baby on the day that she died.
"That's why I wanted to get involved in research and am so passionate about it. I want to see another mother be there for her child and only research can do this."
Margaret (69), whose husband Stuart died suddenly of a heart attack in his 40s, has one daughter, Vicky (37). Outside of her job, she also had an interest as a young woman in supporting people, and trained with Relate as a counsellor in her 20s.
Ten years before she retired, the Belfast Trust supported her through a master's degree in counselling and she completed a post-graduate degree in psychotherapy, allowing her to provide psychological support for patients.
Margaret developed the role of information and support radiographer and won UK Radiographer of Year in 2004. It was her job to listen to the fears of patients newly diagnosed with cancer and to help them find coping strategies.
"I did training with Relate in my 20s, and doing the degree allowed me to bring my outside training and hospital worlds together," she says.
"I love radiotherapy and that might sound awful but I found that in my role, people would come in and trust me to listen to them and I never failed to be humbled by that trust.
"Part of my job also involved speaking to undergraduates. We would have had 260 people a day in the radiotherapy department getting treatment and I always said to the students that while you cannot cry with everyone, when you don't cry at all you know you have been there too long.
"You never stop feeling their pain and what they are going through. The impact on their families and friends is also massive.
"When I first started out at 18 in the 1960s, 'the Big C' was not talked about and even today there is still a great fear around the word cancer.
"Cancer brings people face to face with their own mortality and my job was to talk through their fears with them.
"When you are diagnosed with cancer and sitting in that waiting room it really doesn't matter what job you have or where you live.
"Sitting there beside other people who have a cancer diagnosis, you realise that you share a common bond and great friendships are formed.
"We have a bell which people are invited to ring on their last day of treatment and the rest of the waiting room will clap for them when they ring it as everyone wants to be at the point when they can ring that bell."
Margaret faced unthinkable loss in her late 40s just two years before her breast cancer diagnosis. Her husband Stuart died suddenly from a heart attack and within two-and-a-half years she also lost her only brother and only sister, her mother, brother-in-law and niece, all from different illnesses. It meant that when she was diagnosed with cancer in 2004 at the age of 54, the people closest to her were gone.
As a devoted Christian and member of Mountpottinger Presbyterian Church, she found great support from the congregation when she needed it most.
"The group of people closest to me weren't there when I was diagnosed, except for my wonderful daughter who was studying for her degree at the time," she recalls. "But my church family became my family and rallied round and that was very special. I just found people were so kind and caring."
After supporting other cancer sufferers for over 20 years, Margaret had suddenly found herself on the other side, as a patient.
"It doesn't really matter who you are or what you know, when you are told you have cancer you lose a certain amount of control of your life. You go into that room knowing what you are doing that day and what your plans are for the rest of the year.
"When you walk out, you have a patient label and with that comes vulnerability in that you don't have control of your life anymore. From then on, it is controlled by tests and appointments.
"Even though oncology was my world, I sat on the other side of that world with a lack of control, facing the unknown."
Her own experience has made her passionate in her belief that the patient/carer voice is central in research.
The NICRCF is made of up 23 members who have all been impacted by cancer, including patients, carers and friends.
Margaret says: "We work with researchers. They are the experts in their field and we are the experts on living with cancer. Taking those two voices together to design research has given great strength to the research and keeps patients central to it. A lot of what we have done is focused on the quality of life for people living with and beyond a cancer diagnosis.
"Many people live with the long term side-effects of treatment and what we do is designed to help them move on after treatment."
Stuart McIntosh, consultant breast surgeon at Belfast City Hospital, acting clinical director of the NI Cancer Trials Network and clinical senior lecturer at Queen's University Belfast, summed up the role of the forum: "The forum members provide a valuable contribution to the development of research locally.
"Their input into study design, and the provision of a consumer perspective on study documentation, is extremely helpful for researchers, who may not always appreciate the issues of greatest relevance to consumers and patients.
"I have found that working in partnership with the forum has been very useful for me as a chief investigator, and provides a perspective which is not always apparent to researchers."
Margaret's devotion to research saw her pick up the Iris Colvin Lifetime Achievement Award for Health last April, presented by the Women's Forum NI, acknowledging her exemplary leadership and care for cancer patients.
She was also delighted and surprised to be made an MBE in the Queen's Birthday Honours last June, travelling to Buckingham Palace on February 5 to be presented it by Prince William.
She adds: "When I got the letter I couldn't believe it. I was really shocked. I am also very humbled and I see it as recognition, not just for me, but for everyone on the patient forum and for what has been done in cancer research. Prince William was so lovely, very tall and also very handsome.
"He talked about cancer research and as patron of the Royal Marsden he does have a specific interest in cancer research. Everybody told me to just go and enjoy it and I did. It was really a very special day."
The NI Cancer Research Consumer Forum is inviting anyone with an interest in hearing more about new advances in cancer treatment, and also how to get involved and influence cancer research, to join them at an information event today at Belfast City Hospital, from 4.30-6.30pm.
If you would like to attend this free event contact Amy, tel: 028 90 638468 or email firstname.lastname@example.org