I have posted a few times over the last couple of weeks. I jst wanted to get some feed back on a thought I have had. As much as our breast care nurses are lovely and helpful, I personally would have appreciated a group of people in the same situation to talk to face to face. Also, having spoken to other ladies at different stages of treatment, I definitely felt I was helped by talking abt side effects and feelings and it is better talking to someone who has gone through or is going through the same sort of thing. I myself made what I thought were supportive comments to a friend of mine when she was going through this, but now, having gone through it myself, I have reaslised I was saying the wrong things.
My thought is, setting up a support group, which is offered on diagnosis, for people to meet up and share experiences, feelings etc, all a different stages. As much as this group is really helpful, I think it's nice to put faces to names. Any feedback would be greatly appreciated
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I think that's a good idea, I said to my husband that I wish there was some way you could leave your contact details at the breast clinic with your consent for the nurses to refer newly diagnosed women to contact you so you can support them through it. There was nobody within my friends circle that had been through it being 34 when diagnosed, some had mothers and grandmothers that had but nobody really knew what to say to me and I felt so alone in the beginning. I think close friends and family should also have a support group to help you through although at times I feel like I've had to support some family members!
I say go for it, nothing to lose and something good can come from your experience x
I definitely agree with the family needing support, I have felt i'v kept a lot to myself as I don't want to burden them any more than they r and also, I didn't want to spend all my time with them talking abt it apart from the necessary stuff. Thank u for taking the time to reply. I do want something positive to come out of all this !! x
I think that's a great idea. I am a single parent and would have appreciated speaking to others in the same position. I do think I needed to let it sink in first as I was a panicked mess but talking to others would have helped for my 12 year old son too x
It's something I've thought about too. I think there are some groups around but info seems abit vague. More on the lines of events and charity raising.
I think everyone would have something to bring to the meeting and it is something that people could carry on being part of even after treatment. It could be kept really informal and phone numbers could be exchanged and friendships formed. I have found that people gain piece of mind from talking to others rather than the well trained nurses and I mean no disrespect by saying that
I think that's a great idea. In the West Country where I'm based on the day of diagnosis I was given an A4 envelope filled with literature, there were details of a local support group, that I went to a couple of times, but found the people were sitting in their groups, and I felt left out so I stopped going. About a year ago I did a 6 week Living Well course, which was fantastic, talking to people who have been on a similiar journey to me, we were all given a list of everyone's contact details, but we haven't really kept in contact. I wish you luck in your quest x
Thank u Jenny for taking the time to reply. I would make sure no-one was isolated and everyone was included and try and make it a fun thing too. I was a bit of a social person to say the least before all this happened and always included everyone on our nights out so I don't see that being a problem lol. As you said, leaflets were given out by the plentiful and I don't know about you, but I didn't read many of them !! x
I just wonder whether there is also another element in some of us who don't want to be reminded about the disease too much and I can only give one example. I have a friend who had breast cancer twice (the second episode was 14 years after the first one) and I wanted to know more about how she felt, before and after the operation, about her treatment, but felt she simply preferred to talk about "normal" subjects. She did answer a few questions here and there, but whenever I meet her, we talk about food, holidays, etc., never breast cancer. I think that after the main treatment is over, women want to go back to normality and consider their encounter with breast cancer as just a hiccup.
I haven't as yet but at the end of the day, this would be open to people who wanted to come along therefore people like your friend wouldn't be interested. I am not talking about our situation taking over our lives any more than it does, but just having the opportunity to talk to others if we feel the need to. It could also be an opportunity to socialize as I have found some of my "friends" have kept their distance as they have found my situation difficult to handle. Plus, friends and family work. But thank you for your contribution
It's been 2 years since I finished treatment was 45 when I was diagnosed, during my chemo I reached out to a couple of sites but found them to confusing at the time, I pop in and out of groups, but also would prefer to talk face to face I've searched groups in my area but have never really found any, I would love to meet up with people who have shared the same experience, or help people who are just starting theirs, it's so frustrating and a very lonely place, only people who have shared your fears would understand, I'm 2 years on tamoxifen now, work only 2 days a week, gym, body balance, I've emailed cancer sites to volunteer a few days but had no reply, thought it would be easy, I need a group to meet with or help in some way , it's a very loneyplace !
I totally agree with what you have said. I want something positive to come out of this negative situation and help others. Also to share this lonely place with others and get myself back !
What area are you in? I'm always saying I want to get back to who I was and 80% of the time feel I'm nearly there, but do we? Or do we have to learn that we may have changed a bit, and our future may find we are a little different after the journey of cancer x
The hospital I have my treatment at has a support group run by the breast care nurses and I think the oncologist is involved too. I haven't been to the group as I personally don't feel I need the support, but they often have fund raising evenings, such as a disco or live group, and meet monthly when the oncologist might give a talk and answer questions. They also have fashion evenings, and invite manufacturers of clothing and underwear suitable after a mastectomy to bring a selection of their products. You could ask the breast care nurses if they would be interested in organising something similar. Our local group is called Breast Friends
Yes, I too would have, and would still like to, meet up face to face with people who've gone through the same. The hospital put me in touch with a local group and I went to one meeting but everyone seemed to be in their own little groups and I found it all very depressing and so not helpful. Not what I imagined.
I have had a couple of people say there were small groups and they felt uncomfortable. I think it would be best run like an AA meeting where u all sit in a big circle so everyone is involved
I totally agree with you, I've found my cancer nurse lovely but not really able to talk & get awnsers , I had my opp last March chemo started June & then radiotherapy August , I found just talking to people who have gone through the same thing more informative , I returned to work in November & feel ok, but I don't have any motivation to do anything when not working, I'm sick about every two weeks I think it's the pain killers I take because of the pain in my joints due to the medication. X
Thank u so much for ur response. The overall opinion seems to be that i'm not on my own thinking this is a good idea which i'm so pleased abt. I jst want to turn this negative into a positive and try to help others. The joint pain is a nightmare. I know what u mean abt the motivation and it's still early days for me. Keep well x
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