How I set up a support group
Maureen Charlton is now 63 years old. 15 years ago she was diagnosed with low grade follicular lymphoma. Since then, she has had treatment with both chemotherapy and radiotherapy. This is her story of setting up a local support group for people affected by lymphoma.
Being diagnosed and living with my cancer
I remember the exact time I was diagnosed with cancer. When I came out of the consultation room, the first thing my daughter said to me was “You were a long time Mum. You’ve been in there since twenty past one”. That was Easter Tuesday, 1993.
My consultant was fantastic. He said “We can deal with this”. And over the last 15 years, they have. I have had one lot of chemotherapy tablets, 3 lots of intravenous chemotherapy and a course of radiotherapy. I have had problems associated with my cancer and the treatment, but luckily my cancer has always responded well. Although I know it is always there lurking in the background, I currently enjoy really good health.
How I came to set up a support group
About 10 years ago, I was at yoga class when the teacher mentioned that one of the other ladies there also had lymphoma. She told me about a group of lymphoma patients and their relatives, who met up regularly in a local pub and asked if I wanted to go along. My initial feeling was that I didn’t really want to go at all, but I did and I found it awful. All the group did was talk about who had died, and I found it a really depressing experience. This group finally closed down. Then out of the blue, a charity called The Lymphoma Association contacted me. They had been in touch with my local hospital about starting up a new support group and the nurses had given them my name.
My first support group
Having had such a negative experience at the only group I had been to, I was determined that any support group I was involved with would be uplifting. I advertised widely and we had a successful first meeting at our local hospital. We elected a committee and I spoke about the benefits of Aloe Vera products. I looked forward to the next meeting, but only 3 people turned up and then the following month only 2 people turned up. So we disbanded the group - it was, to put it mildly, very disappointing.
The Northampton Lymphoma Association or ‘Maureen’s gang’
Six months after that first attempt to establish a support group, a nurse in the Haematology department contacted me and asked if I would have a go at resurrecting it. I thought hard about this, but I never could say no to a challenge! I also knew that when I was diagnosed with my lymphoma, I really wanted to be able to speak to other people who had the disease - not just the doctors and nurses. I really felt that this time I could do it. So I visited my local hospital, spoke with the patients who had lymphoma, got some contact details and we started again. And this time it worked.
What we did
Our group met once a month, in the day room of the cancer ward at the local hospital. Unfortunately, not all my members were at ease meeting at the hospital, but it was a lovely room and was free. It also meant that there were always nurses around to ask, if we had any medical questions. We had speakers and social events. But mainly we swapped experiences over a cup of coffee, or occasionally wine and cheese, and shared how we coped with different aspects of having lymphoma. The lady that I met at yoga came along with her husband, and they loved the meetings. The one thing I always guaranteed was a laugh and a hug.
I am so pleased that I accepted that second challenge from the Lymphoma Association and that I have had this opportunity to run a group. I have met some wonderful and inspiring people over the last 8 years. I ran the group myself with support from The Lymphoma Association, who are wonderful. It was hard work at times, but it was worth it. I have learnt so much and I would say to anyone diagnosed with any cancer to find a support group and meet with other people with the same disease. We are all different, but we can get so much from each other.
In 2007 I won an award called the Beacon of Hope. I received this from The Lymphoma Association for raising awareness of lymphoma. This was presented to me at a ceremony at The Natural History Museum in London. It gave me a very feel good feeling and it makes all the hard work worthwhile.
- Lymphoma means a cancer of the lymphatic system
- There are many different types of NHL
- The 2 main types are Hodgkin’s and non Hodgkin’s lymphoma (NHL)
- Doctors group NHL according to how quickly it is likely to grow
- Low grade lymphomas tend to be slow growing
- High grade lymphomas tend to be faster growing
- High grade and low grade are treated differently
- Follicular lymphoma is the commonest type, with about 40 out of every 100 cases of low grade lymphoma diagnosed
You can read more information about lymphoma.
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