Q: Which groups are you a member of or have you been a member of and which ones were/remain useful to you? Online? Hospital organised patient meetings? How often do you visit your online groups? Daily; weekly; monthly; less? Face to face meetings? Monthly; bi-monthly; yearly?
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Question 3: Finding support and information
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This site has been my main source of support, and I visit the forum quite regularly, almost every day - it has become a habit.
The hospital I go to has no organised patient meetings, and now, after 5 years, I'm not sure that I would go even if they had them. In the first few years, I would certainly have been interested.
I have been to a couple of the annual meetings (Glasgow, Gateshead), and found them very interesting and useful.
This site is the only one I use. Like Olivia, I read this site most days. Our hospital doesn't have such a group as far as I am aware. So thanks to this site which offers such a marvellous bank of knowledge I feel I am reasonably well informed.
Thanks Sandy. What would we do without you?
Best
Chrissie
Dear Olivia and Chrissie,
thanks for you helpful response to Question 3. The reason I asked is because we are in the process of rebuilding this website and need to know the links that are worth keeping and those that are off-target or out of date. I hope others will respond because we need to make the links relevant to all users.
Thanks again,
Sandy
My wife has never been a member of any support group and has rather left it to me to learn about CML while she gets on with life, ignoring it as much as possible. I found this site quite quickly and it has been the only place I have looked for information over the last 10 years. I find it extremely comprehensive and informative and you can dig down to the level that suits you without being overwhelmed initially. We went to a couple of the annual seminars you organise and I found it very helpful to hear of other people's experiences that were similar to our own. It was also a great opportunity to ask experts questions that you may not want to ask your own doctor or to simply hear another opinion. Since then, my wife has not wanted to attend another seminar although I think it would be good to attend one now and again. I now visit this site very infrequently but it is still very important to know it is always here. When there is an issue, it is my first place to look.
Which groups are you a member of or have you been a member of and which ones were/remain useful to you?
I came to this site when I was having immense problems with the company "Healthcare at Home" who the NHS contracted to provide my imatanib. My wife managed the complaint on my behalf and was doing research as she suspected the company was in massive meltdown... that turned out to be correct! When googling to get information, she stumbled on a posting on this forum.
I come here just about once a month.
I do also follow Leukaemia and Lymphoma Research on Facebook.
That's all though.
I'd rather just crack on with things and don't really want to run the risk of getting bogus information. I'm not that interested in other's woes either and came to appreciate a long time ago that attitude can be infectious and also that you can wish and imagine side effects if you're expecting them.
Online?
See above
Hospital organised patient meetings?
Never bothered
How often do you visit your online groups? Daily; weekly; monthly; less?
Face to face meetings? Monthly; bi-monthly; yearly?
Once a month