Last Christmas I was introduced to a work colleague who had CML. He had recently had a stem cell transplant and wasn’t back at work yet, but came in for the Christmas lunch. I had just begun my phased return almost 2 years post transplant for AML.
I haven’t seen him since because we work in different parts of the building, but I bumped into him in the reception area yesterday. I said, “Hello, how are you?”
“Fine”, he replied, then he paused, looked at me again and said, “Oh! It’s you! Well, I’m doing okay, but…” and proceeded to tell me how he really is. Because he knows I’ll get it, when the rest of his colleagues eyes will politely glaze over unable to really comprehend what he is saying to them. That’s the power of support groups like this. It gives you the chance to talk to people who have had similar experiences to you and will completely understand.
I like to think of it as having normal-life friends and cancer-life friends. When I am asked, “How are you?” , each will get a very different response to the question.
Oh, Jane, what you say is so, so true. I also have 2 lots of responses for different people. I am trying to think how I define the people. I have one group who cannot understand and/or take my feelings and they can be family or friends. The second group that do understand and/or can take my feelings can also be family or friends. Perhaps there is an extra special group within my second group and that is my blood cancer buddies, who are the most special of all. What gets me is the people who come up to me with their head on one side and say ‘and, how are you?’
Jane and Erica, my recovery only really began when I found my Bloodwise family. Even with family and friends that understand I tend to keep a lot from them as I don’t want them to worry. The only person i can’t hide anything from is my husband, as he soon senses when i am having a low day, and last week I just shouted " I am sick of this" which was as a result of me walking at a snail’s pace (even a snail would beat me some days). Not often that I feel sorry for myself. Thank goodness for my Bloodwise family that I can be open with. When friends say I am an inspiration I hate it, as I am just doing what I can. The true inspirations are the people involved in trying to eridicate blood cancers, or are looking after those with blood cancers
Hi I run a Support Group for people with myeloma. Although a relatively small group, we normally have about 20 at each meeting, I think people like it because as others say you can talk about how you feel and others understand. We find people want to know about their condition and share experiences. Indeed when we have a Haematologist present we get even better attendances as last time we had 31 people there. We do however find that people also want to forget about their illness too and we have speakers on general topics e.g local history etc too.
Hi Joan, that is a brilliant number of people attending your myeloma support group, that is a real credit to you. As you so rightly say it is a safe place for people to share how they really think and feel with others who understand and that is just what I have found with this community forum too. I think it would be so helpful if you would be able to share the challenges, pitfalls, triumphs etc. of setting up and running a support group for others thinking of doing it.
Our support group has been going for 11 years now. When we set it up it was really the CNS Haematology who was keen to get it going. She identified myself and another patient who would be possible Support group leaders. We drafted a letter and to preserve confidentiality the CNS sent it out to all the patients that she knew had myeloma.
As I had been a management developer at the first meeting we did some exercises to decide what people want from the group. Some groups are run differently to ours but we tend to have a speaker at each meeting. We find when we tried it without attendance slumped.
We decided that we did not wish to meet on hospital premises. The only problem with that is that we have to pay for the venue. Initially we got a grant to cover costs from Macmillan Cancer Support. Since then we survive on donations, grants (I apply for these through the local Community Foundation which exist in every area) and occasional fundraising.
In order to get grants you need a constitution, a management committee and a bank account. We have a committee if 6 which includes a chair, secretary (me) and treasurer (my husband). If you want to see what we do visit our website - Home
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I am happy to share tips and ideas with anyone who wants to set up a group in their area.
Hi Joan, thanks so much for your comprehensive reply it sound as if a lot of thought and effort went in to getting the set up right, a real compliment to you and all. Please keep posting, I am sure you will help so many others.
Thank you so much for sharing details of your support group with other members in our community and the process of creating one. You mentioned a little bit about having speakers attend the meetings or attendance would fall. What kind of speakers did you invite to your meetings and what kind of impact does it have on your support group?
We have had over the years a wide variety of speakers. Undoubtedly the most popular are when we have a Consultant Haematologist on current and developing treatments. We have the biggest attendance and we get real engagement with the members who ask lots of questions. The Consultants have been great and it is good for people to know what their options are for the future. Other speakers have included a pharmacist, dietitian, complementary therapist, coping with stress, relaxation techniques etc. In addition we have things just for interest like local history, history of Warburtons bakery, development of local steam train etc. We roughly try to alternate between things related to the illness and things just for interest. We find with the speakers on Myeloma related issues we get lots of questions from the group and they can ask questions that helps them to cope.