I am leaving the forum
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[Deleted User]
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I am sorry that you feel the need to leave, Joannie. In the end it is about what is best for you. Good luck with your future path and take care.0
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Hey @Joannie,
That's a shame. I think you have explained that original post and that it was just how you felt at the time. Since then you've continued to share some lovely and informative posts and I am sure nobody on here holds a grudge. I would imagine not everyone knows that you live alone, and how hard that is, which is probably why you should stay sharing here.
Social media is an interesting beast. It has the power to make you feel fantastic or depressed. My daughters have a name for it as it pertains to facebook, twitter etc. They call it share, compare and despair.
You share something, you compare it to your "friends" posts, see who has the most comments or "likes" then you despair if you don't have the same response. Or you feel fantastic if you "beat" them. I thought that was quite interesting coming from a generation that is completely absorbed with social media.
I think everybody plays twister with their own brain from time to time.
Perhaps a break from the forum might help. rather than a complete bail out. It would be a shame to remove all your posts that may be of help to people new to the path.
You may feel differently next week.
All the best with whatever you chose.
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Oh @Joannie so sorry you feel like you need to leave us . Like @ Kezmusc I have read your valuable input on here & it would be a shame to lose it .
It surely must be damm hard being on your own , I however have a husband & sons but more often than not feel alone ! This is BC !
I don't have a sister , a daughter or my mum ( she was a Joannie too ) so you lovely ladies on here are my sisterhood .
I like @finch struggle to find words & make my fingers type at times ,sometimes because the tears are blurring my eyes !!
I hope you can have a break & return if that is better for you .
if you'd like to keep in contact please pm me & I would be happy to do so .
Good luck & good health to you always
Beth xx
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@Joannie please just take a break and come back to us xoxo1
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Sometimes a break and spending more time with others face to face is good for the soul and is a healthy distraction from our ongoing suffering / fears and experience of breast cancer.
Sharing your own difficulties as you have isn't moaning but can help others with the same issues not feel so isolated. I use that word moaning as it was included at one point in your title of others sharing their difficulties. I however think discussing difficulties isn't moaning but sharing. If we can't talk about these issues with other bc sisters /brothers who can we share it with? . For the most part ...in the real world...most of us put on the brave face and soldier on. It's wonderful to have a platform that we can share what's really going on behind the smile.
A few years back prior your diagnosis and joining, this site had an upgrade. There were multiple multiple groups at that time. Each group has to have people manage it...usually several. During that upgrade these groups were reduced and refined as people would join, put out a call for support and nobody checked in. At that time it was discovered if the post was put on the main forum there was support rapidly rallied for individuals.
The groups remaining are active and / or require privacy by the very need of the intimate discussion required. ie the breast reconstruction group and the lets talk vagina group. It is less about similar interests and more about the privacy aspect.
Individual threads however by there nature attract individuals of similar personality and experience. Sometimes there aren't many comments as people don't have the experience to share or know the words to comfort. However writing about your experiences can be therapeutic, just like diary writing. It clarifies our own thoughts and feelings and often we have answered our own problems by the end of the post by taking the time to think.
I am married and have children. But the reality is on a day to day basis neither my husband, children, work colleagues have any idea of the internal struggle of what having breast cancer and treatment brings as we generally don't share it. This site allows a safe place for us to do that. Regardless of sex, race, colour, religious beliefs or circumstance. Moderators are important to ensure all people feel included and not ostracized. It is a difficult balance for them I'm sure.
Take care Joannie. Know that we know you are a very caring person who is struggling at the moment and sorry that we couldn't provide you with the support you felt you needed to remain.
Kath x
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Whatever our support base, we're all ultimately alone with cancer. I've found that by talking about the disease to others that I'm sort of "outsourcing" my fears and reinforcing my hopes. While I'd never want to burden anybody, and I certainly try to help more than I whinge, I feel the fellowship of patients is a mighty powerful healing aid. I think the aim is to not get involved in group politics and learn to step back when there are issues that might develop into somethingyou don't want to be involved in. At the same time, I like to avoid too much group think, since nothing is really achieved without diversity of opinion.
What's really important for all of us is to build up resilience in all matters to do with this shitty disease. By staying strong, and not sweating the small stuff, we develop a tough and practical outlook on our situation and become positive mentors for the many people who lurk on the posts here. It really is up to the senior members, if they can, to show newbies that there's a practical, emotional and scientific way to handle cancer diagnoses and treatments, and all its psychological and physical aftermaths.
I'm writing this having just arrived in San Diego on a scholarship for a course for patient advocates/activists. I'm about to start a very intensive week of lectures which really delves into the science of breast cancer and teaches us the importance of evidence-based treatment. Some here will remember that my male bc mate Rob and I were invited to attend the BCNA Summit last year, the first time men were invited to the biannual event. Rob's now being treated for brain mets, and this has made me even more motivated and determined to help people cope with all stages of breast cancer.
As @kezmusc suggests, Joannie, you could take a break from the boards for a while. Or go somewhere else to chat. There are some great Facebook groups now. But, it's too bad to delete your posts, since there goes a lot of collective thought and discussion as well as lots of other people's posts. Ultimately, though, it's your decision, so good luck whatever you decide.7 -
Hey @Joannie I havent had a chance to read the other Members input here but I will later when I have some more time. I think there are alot dont understand why you are taking a break from the Forum, as we have interacted alot recently. I want to thank you personally, you have contributed and are valuable to this Forum as is each and everyone. I unfortunately as you are aware are also stepping back from the Forum after contributing for a few years now. Anyone that really knows me here knows I have been nothing but selfless and giving which is all I ever wanted was to help others as I had no support through my 2 diagnosis.
I totally understand what it is like to have no partner, I had nobody through my first diagnosis and reared 2 children. My 2nd diagnosis I was only in a relationship for 5 months and had 2 teenage kids and 1 in VCE and had been diagnosed with Depression. My partner wasnt around alot as we lived far apart. I like you never said an awful lot as we just do what we do, I certainly have been happy though for those who are in long marriages and have that support. It is so different for everyone and not everyone knows the depth of our stories.
So Joy, my love to you and you know I totally get you stepping back as I and a few others are also doing, there is so much more I could say here, but things are best left as Im sure you would too.
Its been a pleasure to have been here and a pleasure to have interacted with you. We are all here for the same reasons and unfortunately I think it gets lost along the way and people make assumptions.
Hope you stay well and know that I get you..xx Hugs Melinda
PS:- I know you werent meaning at members 'moaning' at all unfortunately this has been misinterpreted, just maybe sometimes there is just too much dominance with some posting in the forum possibly.
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@Joannie. I, too, am sorry that you are thinking of leaving as I have read many of you posts and comments which have helped lots of ladies. My friend almost committed suicide due to the nastiness she received from others here so if you need to leave for the sake of your sanity then I would certainly understand. I think sometimes people get a bit too caught up with an idea where if they waited a few minutes they would just let it be. By the way, my friend took off the notifications and only comes here to send or receive the personal messages. Having no notifications she is not even aware that people are saying things about her. May be a way for you to go ? All the best, do what is right for YOU. Anne0
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@Joannie - oh dear, I was just getting to interact with your posts as I had been away. I am so saddened to hear of your experiences and hope you will come back to the site soon. I am on a few facebook sites, and find them less confronting and easier to navigate. One is for arimidex, another is Her2 and one for nerlynx. They seem to have a good balance of experiences and views. I do however remember a time when I had read so many comments along the lines of "12 month mammogram was clear -thank you Jesus". It got to me one day and I replied something along the lines of "very happy for you but how does that make me feel when I lost my 5 year old grandson to a brain tumour just before my own diagnosis". You can imagine all the thoughtless replies from so called Christians and I felt rotten for days. Something I learned on this site just this week is to work harder at understanding and validating others and not jumping in quickly to push my own point of view. Social media is a double edged sword. I hope to read a post from you again soon Joannie and sending you loads of hugs and best wishes.1
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@Joannie - I just read your thread that Giovanna wanted to transfer to another sub group. I am so sorry if my post above offends you. I had no idea. I am absolutely mortified and wish I could delete. My sincerest apologies if I have offended you, I really want you to continue your contributions and I fear my comment above is so unbelievably inappropriate now that I've read your other thread. Take care
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