Who Are We
The Irish Brain Tumour Support Group was formed in Dublin in May 1991 by a small group of patients and their families, with the objective of being a community based support group for patients and relatives.
On the 8th of April 2002, the Cork Brain Tumour Support Group was launched in the Kingsley Hotel, Cork City. This is the first group to be formed outside Dublin. The group meets on the first Wednesday of every month at 7:30 PM in the Chemotherapy Department in Cork University Hospital. This group facilitates patients and their families in the Munster and South Leinster areas.
The group is different from other self-help groups in that trained health care professionals e.g. social workers, radiotherapists, physiotherapists, oncology, theatre and general nurses, voluntarily attend to facilitate these meetings and are also available to talk on a one to one basis. There is warm, relaxed and friendly atmosphere at these meetings. The group also provides information on services and facilities availble. One of the main aims of these monthly meetings is to offer both practical and emotional support together with coping strategies. From time to time a variety of speakers including those from a health related background, will attend these meetings to discuss topics of relevance to both patients and their families.
Information and support can make a big difference to the pace and ultimate recovery of a brain tumour patient, so if you have been diagnosed with a brain tumour, or you know someone who has, the Irish Brain Tumour Support Group is here to help
The First Meeting
Good evening all. My name is Joan Wynne and the reason I am here this evening is because, in May 1987, my husband Brian was diagnosed as having a benign brain tumour. While we felt at that time that surgery and nursing care was excellent, sadly there was no follow-up support from a family point of view. From my experience this is desperately needed.
We have five children whose ages at the time ranged from 5 to 19 years. Brian ran his own business. Overninght, everything changed for us. Brian was unable to continue to run his nusiness. Family life, in general, was completely disrupted. I had to become a working mother until the business was wound down. Naturally, the children were traumatised by all this. Try as I might, I was not equipped to give them the kind of reassurances I felt they needed. They suffered.
In the ensuing years, Brian has been hospitalised on many occasions for various medical reasons. At one point, he was under the care of four different consultants. At no time did we all get together to discuss Brian's case and as a result, there were many gaps in Brian's care that troubled me. To tell the truth, on one or two occasions when Brian became ill, I didn't quite know who to contact. Through all this our own G.P. was wonderfully supportive. However, it would have been a great help if just one person could have co-ordinated Brian's total care, a person with whom I could have had a constant contact.
In May of this year I heard a letter from Arthur Thompson, being read out on 'The Gay Byrne Show'. Arthur alos has a tumour. Unlike Brian's it is malignant. In the letter, he described how completely isolated he felt as a result of his illness. He was unable to continue with his job and was at home all day. 'This is exactly how Brian feels' I thought. So I phone Arthur, and he and Brian arranged to meet.
At this meeting they discovered they were not alone in a lot of the problems each of them was trying to work through. Both of them are vibrant, energetic men and they were finding their new restrictive lifestyles difficult to come to terms with. Medically, their cases were quite different. Brian suffered a stroke post-surgery and has also lost the sight in his right eye. Notwithstanding the differences, Brian found the meeting with Arthur very enriching and they arranged to meet again. Through several more meetings, the lack of backup support for everyday living was discussed. As a result of these meetings the Brain Tumour Support Group was initiated.
As Arthur has explained, we are non-medical, but would hope to help through our own experiences, those of you who may just be starting out on what may seem a dismal path, or indeed those of you who, like us, have felt isolated. Hopefully through this group, the Brain Tumour Support Group, we can pool our resources and share and help each other.
Jurys Hotel 1990