'My dad had breast cancer, five years later I got it ...'
Watching her beloved father cope with a diagnosis of breast cancer was an inspiration to Madeleine Mulgrew when she, too, was told she had the disease. Madeleine (50), from Dungannon, tells Judith Cole how she is now helping other patients cope
A diagnosis of cancer is a devastating thing and it took me years to come to terms with it. But turning the negative into the positive and using my experiences to help others has brought me through.
I have seen the fulfilment of my dream to open a centre to provide support and information to people with cancer who live in rural communities. And because of that, I wouldn't change anything for the world.
Following a hysterectomy in October 2000, from which I recovered very well, I was placed on hormone replacement therapy which worked very well for me. But about eight weeks after the operation I noticed changes in my breasts - one was larger than the other. While this was unexpected, it had occurred before during my life and I didn't think anything of it.
A few months later, however, a doctor friend urged me to seek advice on my symptoms as she knew my family history - my father had been diagnosed with breast cancer in 1996 and, thankfully, had recovered well.
My doctor immediately referred me to a consultant - but at no time did the possibility of having cancer cross my mind. I didn't even tell anyone I was going to the hospital for an examination, so insignificant did I think it was. As I sat in the waiting room, I scanned the faces of people sitting there and the thought occurred to me that not everyone would leave that day with good news. I never imagined I would be one of them.
After I had a mammogram a doctor told me very directly that something had come up on the scan - and it was at that moment that I switched from not considering cancer to knowing within myself that I had it. After the doctors performed further examinations I was told that a lump had been found and that I would be back in hospital the following week for surgery.
When you're given a diagnosis of cancer you think it's the end of your world. You don't know if you will live or die. But while I thought those things, I had to present an upbeat front to everyone around me and allay their fears. It was particularly difficult to tell my parents, given what my father had gone through. But my brothers and sisters and I decided to go and see them together, and break the news that way.
There was a sense of panic in the family - and my four children just wanted me to get the surgery done immediately and get it over with. It was a very difficult time, as my fourth grandchild had just been born and it should have been a time of celebration.
I had a mastectomy and lymph node clearance and, because my cancer was defined as grade one, I didn't require chemotherapy or radiotherapy. I was placed on adjuvant therapy which involved taking the drug tamoxifen for five years.
Back then, I did not know what reconstruction surgery meant and didn't have the mental strength to ask. The effects of my surgery were very difficult to deal with in that my clothes would no longer fit and every morning when I got dressed it was a reminder that I had had cancer. Maybe if I'd gone for reconstruction things would have been different. Now, I'm not brave enough for it, but it doesn't bother me any more and I just live with it.
More shattering news came three months after I was diagnosed with breast cancer: my father was re-diagnosed and had to have a mastectomy. But throughout it all he has been wonderful, and an excellent role model for me. He said that nothing must change, things must go on as normal and he has come through it with such dignity. Knowing the history of the disease in my family I had to make sure that I, too, was a good role model for my sisters and children.
It has certainly been a roller-coaster of emotions. Would I see my grandchildren grow up? I had paralysing fear when I went to get my prognosis after my surgery - I wondered, am I going to be told I have six months to live? As it turned out, I got a good prognosis but any fears I had I kept to myself, rather than needlessly distress my family.
Another big concern about cancer is financial - and as I couldn't keep working the impact it had was almost as bad, if not equal, to the emotional.
How the disease was portrayed sometimes in the media was hard to deal with, too. I remember reading about certain high profile women who suffered breast cancer, and how everything was said to be fine and wonderful, and they were on the road to recovery. In the real world, it doesn't happen like that. Reading stories like that made me feel inadequate. What was wrong with me, that I didn't feel as bright and positive as them? It is vital that the negative side of cancer is not under-emphasised.
Having cancer is not a pleasant experience by any means. How long did it take me to come to terms with my diagnosis? Realistically, five years plus. There are still days when I feel I still haven't come to terms with it. And I would be deemed a mild case - people who have to endure chemotherapy and radiotherapy would go through much worse. I'm a very strong person - very little knocks me down - but this knocked me right off my feet, and I very nearly didn't get up again.
However, with the support of family and friends I took one day at a time and gradually became stronger. Passing the five year landmark since my diagnosis was good - I'm now six years down the line and my fear of recurrence has passed. I've had a few scares along the way but thankfully they haven't been anything.
Despite all the difficulties, I would not do anything differently. Having cancer has been the turning point in my life. I had a brilliant life before - I was very happy and had no wants or needs. But the diagnosis challenged and changed my life in ways I could never have imagined.
One of my biggest frustrations was the lack of information and support for people living in rural communities. Sometimes you don't even make sense to yourself, but when you talk to someone who has been there before, you make sense to them.
I was able to turn my experience of cancer from negative to positive through Macmillan Cancer Support. In 2002 I took part in a pilot scheme to train for the Cancer Support Certificate, and it changed my life. I was so impressed with that programme that I wanted it brought here, and the first programme was delivered in Northern Ireland in 2005. Another programme we introduced was Living with Cancer, a six week programme for patients and carers - but only people who have had cancer can deliver the programme.
Yes, having cancer is horrendous but at some point you can use all those horrible things to help someone else. You think you're never going to be the same again, that there's no place in society for you. And while the support of family and friends is brilliant, the journey is a very lonely one. It's a loneliness that can't be explained - and it's really only someone who has been on that journey themselves who understands what you're going through.
Establishing Cancer Choices was the fulfilment of the vision I had to do something to help others. People in rural communities were lacking in so many aspects of cancer support and my vision was always to provide a safe, secure environment in which people could come and cry, laugh or throw a tantrum - whatever they needed to do to share their feelings, and to leave feeling supported. I wouldn't have had the energy to travel to Belfast for that so I wanted to provide somewhere closer to home.
We're supporting people throughout Northern Ireland, at a local, regional and national level. My work is all voluntary, about using and sharing my experience to help people come to terms with their diagnosis and regain control of their own lives and to move forward in a positive way.
And a further dream has come true with the opening of our new premises on November 1 at the Carland Road in Dungannon, which will offer complimentary therapies, education and training programmes and support. A wonderful support to me throughout it all has been my consultant and the honorary president of Cancer Choices, Professor Roy Spence. He has been an excellent support and gave me back my dignity and encouraged me all the way.
I also sit on the advisory board of the Royal College of Oncologists and Radiologists in London, and on Macmillan Cancer Support's advisory boards for education and training.
It has certainly been a long and often gruelling journey. But being able to help others who are going through what I did has made it all worthwhile."
For more information on Macmillan Cancer Support telephone 028 9066 1166 or visit www.macmillan.org.uk