MY HEALTH EXPERIENCE: I WAS 21 when I was diagnosed with malignant melanoma. I was only recently married and we had just bought our first home.
A nasty mole on my leg had started to change – it became encrusted and began to bleed. Even though there wasn’t as much awareness as there is now, I knew enough at that time that it wasn’t right. So I presented myself to my GP and he sent me to the hospital.
I was told I’d have surgery within two weeks, but six months later I was still knocking on the door, and things had got nastier. Eventually, in January 1976, I had major surgery on my leg: they had to take a large chunk out of the muscle, so I was quite stiff and sore.
I didn’t react very well. I was vain at that time – I was in miniskirts and, like every 21-year-old, I was conscious of things. And my father had died only two years earlier from lung cancer, so I had a terrible image of cancer, and I thought it only happened to older people.
I got depressed, I was worried and I lost a lot of weight. I was about 18 months married to Brendan at this stage, and it was a bit of a change from what we had set out for.
I was told I probably wouldn’t be able to have any children, but then because the cancer didn’t recur within five years I was allowed go ahead and get pregnant, and I had two boys, Ronan and Conor.
Then, in the early 1980s, the cancer turned up again, and this time they had to remove about 12 lymph glands from my groin.
I got over that, and then a couple of years later I got a very serious recurrence in my pelvic area – it was secondary malignant melanoma, involving my ovaries.
At that stage no surgery or treatment was offered, and they said I probably wouldn’t live much more than three months. They told Brendan this in a busy hospital corridor, and he said he’d never forget it. He was just left standing there.
When I didn’t die as predicted three months later, I was admitted to Our Lady’s Hospital in Harold’s Cross, Dublin, for symptom control. People didn’t really expect me to come home. But I did come home – I had two young boys and I wanted to be there for Christmas.
Then, because I wasn’t dying as they thought, they reviewed my case. I was offered major surgery in February, and I made a miraculous recovery. I felt very inspired to do something with my experience.
I had recovered against the odds, and I had identified a huge amount of areas that weren’t covered when a young family is coping with serious illness: no childcare, no practical help, no transport into hospital.
We looked around, and found there were no cancer-support groups in Ireland. People didn’t know what to do. The medical side was taken care of at the hospital, but then people had to go home and live their lives, whatever way they were going to be.
So in 1990 a group of seven of us set up a cancer-support group in Bray. We got a room in a local centre, and people came from all around – from Arklow, Lucan, Palmerstown, Tallaght.
We tapped into an unmet need, and it grew and grew and grew. Conor and Ronan both work for the centre today, and they are passionate about what they do because they are tuned in – they grew up with it, answering the phone.
It started up around our kitchen table, with the phone was going from early in the morning until late at night. I’d be having my dinner and I’d say “I won’t take the call now” and they’d say, “Mam I think you should take it; this woman sounds very sick”.
We kept growing, and today we get daily referrals from Vincent’s, from Luke’s, from the Mater. We have a helpline that people ring from everywhere. That’s on the go all day every day.
Cancer is very complex. Some people might just ring up and say, “I can’t get into the hospital for my treatment, would you help me?”, and we would drive them in.
We have a team of volunteers – a lot of them would be people who have used the centre themselves and have first-hand experience of what it means to have someone available to support and help.
One woman was in the other day – her father had been coming to us for 10 years, and sadly he died – but she said it made a huge difference to know that we were there, that we could bring him in when she had to go to work.
We also have three complementary therapists working here part-time, offering reflexology, relaxation, holistic massage and Indian head massage. They are booked up every week.
The drop-in facility is open every day. People can just ring the doorbell. They may be just coming from the doctor, they may have just heard, they may have someone ill.
We also have a team of trained people who do home support, and we work in consultation with the medical team. They might ring us and say, “We have this lady up there and there’s nobody with her for the next day, could you send someone up for an hour?”
Last year, we had 5,500 people, and we provided 13,800 services, but we have only a three-room rented accommodation. We have to try to get a capital grant to get a purpose-built centre – we do a lot with children, and we want to have a play therapy room.
For the person using the centre, everything is free: the social outings, the respite care, the counselling. We have a donation box, but it’s not enforced. If people want to put a euro in, they can. We just want to help with anything that could make life easier.
For more information on the Bray Cancer Support Centre see braycancersupport.ie
In conversation with Claire O'Connell
