Everyone knows what it feels like to be out of breath and we’ve all had our share of bruises, but, when a combination of both becomes a regular occurrence, it might be time for a check-up. Chances are there will be nothing wrong, but for some people, it could be the sign of a serious illness which will need treatment sooner rather than later.
This was the case for Mary Staunton, who went to see her doctor in 2012 for what she thought would turn out to be something minor. However, she soon found herself in hospital, embarking on what would turn out to be the most difficult experience of her life.
“I had bruising for a while and was getting very out of breath, but had no idea that there was anything major wrong,” she says. “I visited my GP one Friday morning and she sent off bloods – but then I got a call at 6pm that evening telling me to go to St Vincent’s Hospital and to bring a bag. Little did I know that I would not leave hospital for almost seven months.
“My sister, who had been on the way to her Christmas party, and I sat in A&E that evening wondering what was taking so long and planning what we’d have to eat on the way home, when, eventually, the haematologist came and told me he suspected that I had blood cancer and would have to stay in for further tests.
“I had heard of leukaemia but had no idea what it meant – but those words were so chilling – it was a real ‘life flashing before your eyes’ moment. At the time I was given a 70/30 chance of recovering with chemotherapy treatment, and I wondered if I was going to die and thought that I was too young, I hadn’t done all the things I wanted to – all the trips I had planned, all the restaurants I hadn’t tried. There was such a rush of emotions.
The nurses and doctors were amazing, explaining all the new words to me, and we became great friends over those few months
“At 6am, I was brought to what would be my home for the following few months and my brothers and close friends all arrived later that day. I felt so encircled by their love and support – luckily my family and friends are low-drama people, so I was surrounded by a wonderful calm (atmosphere) all the way through my treatment; it was amazing.
“But it was worse for my mother, who was 85 at the time (and has since died) as she was physically far away and couldn’t do anything to help, except bring me boxes of food on her weekly visits, and say lots of prayers. The initial few days were a whirlwind of tests and treatment, combined with the practicalities of moving into a hospital, as I had packed a bag which consisted mainly of socks.”
The Roscommon woman, who lives in Dublin, had a biopsy the day after admission and was diagnosed with Acute Myeloid Leukaemia (a cancer of the blood and bone marrow), before starting chemotherapy the next day. “I had very little time to think about it. One of my first questions was would my hair fall out, and when I heard that it would, I phoned my amazing hairdresser, who came all the way to St Vincent’s at the end of a long pre-Christmas work day and shaved my head.
“We both cried, but being bald was strangely liberating. The nurses and doctors were amazing, explaining all the new words to me, and we became great friends over those few months. Family and friends rallied around and I cheekily had a rota for visitors – there wasn’t a day that I didn’t have someone bringing in food, books and chats.
“But the first round of chemo had no effect, so the subsequent rounds were stronger and tougher; unfortunately these were also ineffective, and I was put forward for a stem cell transplant.
It was a joy to be home alone after being constantly around people for so long, but I was weak for a long time after coming out of hospital
“This resulted in some very rough days when the future seemed quite bleak. You don’t choose to go for the transplant, you have to be selected, so despite being told I wasn’t the ideal candidate, I was lucky to be chosen, and the next challenge was to find a donor. The chances (of survival) are greatly enhanced by a sibling donor, so my sister and my two brothers were tested, both of whom were a perfect match and wanted to be the donor, so we let the doctors choose, and my younger brother got the job.
“I moved to St James’s Hospital in early May 2013 and had the transplant there. I spent the intervening months there, as my immune system was shot and I could only spend very short periods, a day here and there, away from the hospital, as I was quite ill and weak, and contracted Graft vs Host Disease which affects many of your bodily functions. After being discharged, I stayed first with my older brother and his family and then with my sister, before finally going home to my own house in August.
“It was a joy to be home alone after being constantly around people for so long, but I was weak for a long time after coming out of hospital – I had a walking stick, an oxygen tank and a moon face from steroid doses, but it was generally all going in the right direction, despite some setbacks.”
It has now been 10 years since the 59-year-old underwent the stem cell transplant, and today she is doing very well. She has learned a lot from the experience, and not long after the transplant become involved in an initiative to help other people who have been diagnosed with cancer by sharing her experience which is, in turn, beneficial to both cancer patients and the experts treating the disease.
“I eventually went back to work in UCD (where she works as a communications and event manager) two years after becoming ill. I was lucky to get a part-time role at the university, and over the years I worked my way back to a role similar to the one I had before I was diagnosed. It’s a busy job, but I love it and I have a wide circle of friends who I love to socialise with, so I am doing well.
I will always have some of the consequences of what my doctors call the chemotherapeutic drugs which I had to take
“One day, I saw a notice about a Patient Voice in Cancer Research meeting and thought I would give it a go as I had always planned to get involved in some way. It was run from the UCD Conway Institute, so it was an easy stroll across campus to the meeting. I joined the steering committee and became a member of the communication sub-group, and am still there seven years later. The group, led by two amazing women, Prof Amanda McCann and Elaine Quinn, is a vibrant, open space where lots of the people are survivors just like me and it’s easy to speak up. I bring my communication expertise to the various events and initiatives we run, helping to demystify what can be impenetrable medical- and science-speak at times.
“The patient voice is critical in ensuring that research is accessible and understandable for the public. Understanding what researchers plan to do and how they work is fascinating, and the fruits of it are so apparent. Through years of research, there are now a number of cancers which are treatable, or at least people can live with them. So, while it is still a scary word, it is no longer an automatic death sentence – and here I am 10 years later to tell the tale.
“I still attend the Late Effects Clinic at St James’s Hospital and the amazing team there are still accessible to me when anything crops up. I will always have some of the consequences of what my doctors call the chemotherapeutic drugs which I had to take, such as weak bones, lung, gut and skin problems – but that transplant saved my life.”
Patient Voice in Cancer Research
- PVCR began in April, 2016 when 100 patients, carers and patient advocates were invited to UCD Conway Institute for tours of the laboratories by cancer researchers, followed by a discussion on whether and how patients and carers wanted to be involved in the cancer research process.
- The initiative has delivered events to build connections between cancer patients, carers and researchers and to bring the lived experience or voice of the patient into the research process.
- In-person, online and hybrid events to support these conversations include communication workshops to help young researchers write plain English abstracts of their research.
- The network currently comprises 450 people.
- To date, there have been over 25 events – in Dublin, Cork, Galway and Athlone – with feedback sent to 17 research groups based in universities around the country.