Just a thought. I am now 20 months post dx and 12 months post end of treatment but I still log on here nearly every day. I am still depressed and my friends and family think I should not be coming on here as it makes me unable to “move on”. Strangely my bc nurse agrees!!!
Is anyone elsethis far down the line and still on every day or so? Most of the other people I know who are years past diagnosis woudlnt dream of coming on line as they are too busy living a “normal” Life . ANy thoughts?
Hi
I am 16 month post DX and I still log on here and have a read. I don’t always post. I think if I can help anyone or have any kind of answer then its worth while. I know how scared I was at the beginning, and how little I knew. When I first came here I was so thankful that there was so many knowledgeable people to answer all my questions, so if I can help anyone now I’ll keep posting and reading…
Hi, I posted a little while ago today (Give me a kick) and I am 3 years down the line. Although I have only recently posted a couple of messages I have found this site a really big help. There’s nothing like talking to everyone here who knows what its like having been there themselves. Friends and family make really flippant remarks but when they have a problem everyone has to rally round to give them support. Perhaps the idea of a loved one having breast cancer terrifies them which is why they seem so aloof sometimes. I always try to be positive, put a smile on my face and carry one regardless but as I said in my post, 3 years down the line I am beginning to feel a little apprehensive, so I believe that everyone should be on this for as long as they need it regardless of what the professionals say. Its nice to be able to laugh, cry, ask questions and just be truthful about how we really feel. So keep posting.
I am 15 months post diagnosis an 8 months post chemo and rads and am currently on herceptin. I am back at work and feel really good but I log on most days. I never knew about this site until post chemo and I felt so alone. I will continue to log on and if I can help others with my experiences then all the better.
with all your experience of the treatments and how you felt going through the im sure your input would be of value to someone recently diognosed and they can see for themselves that there is light at the end of the tunnel, so id carry on reading and posting on site .i fully intend to as well as living life! best wishes lynn x
I think sites like this can become a bit addictive and when our family and friends want to believe that we are ‘cured’, logging in to these forums is a constant reminder to them that we have this disease. At that point I suspect it is time to sit them down and say when you are ready to move on it will be your decision! Perhaps even to point out that you are part of a support system for other women in the same situation who need to know xx years down the line some of us are still alive and kicking. I have had bc now for 17 years - the internet and forums like this were not around then. I only discovered this one by chance 18 months ago. I have a lot of experience with the ups and downs of this disease, now having secondaries which are well under control and if my presence here can help others it is time well spent. I also hope and have told my husband this - that should I need support in the coming years I will have made many friends that I can turn to.
I am only 8 months post dx (WLE, rads and tamoxifen) and this site has been wonderful but now that treatment, other than medication has finished I don’t know how I feel. I log onto the site regularly, sometimes several times a day and read things that comfort me but also, unfortunately, things that upset me. If we are out or away I often feel better not logging on, perhaps it makes me forget more. I am going for counselling after the hols in Sept and I have a feeling they will say to not log on, but it has been a comfort and again if my own experience helps others then it is worth it. Maybe I will post again after I have a 2 week break away from it because of my holiday and see how I feel!
Take care
Shorty xx
I started logging on this site in Feb 2004, 4 months after my diagnosis and I’ve been logging on most days ever since…through the rest of primary treatment, 2.5 well years and now a stage 4 regional recurrence. There are times when I probably log on too often so then I have little rests.
Basically breast cancer was the most momentous moment in my life…having a poor prognosis from day 1 I see breast cancer as something I inevitably live with and its good to have a place to go where there are others who share the experience. ( though we are not all the same either in our breast cancer, or our needs or how we live with it) As well as having breast cancer I’m now interested in breast cancer…if that makes sense…in research, in perceptions of cancer as an illness, in the way charities work, in media hype about bc, everything that I call the ‘politics of breast cancer’. I’d be the same if I’d got MS or heart disease or…or…
I’ve met some wonderful women through this site, celebrated when treatment and tests have gone well, and cried when friends have died.
Though being a frequent poster I’m also quite a private person so in some ways my persona here is a construction…its real but its not all of me. I’ve seen counsellors regularly since my diagnosis and its from them that I find the most personal support.
I think we all use on line sites differently and I make no apology for thinking they are great…being able to type into cyberspace is for me really helpful. I know that most people use the forums during and just after diagnosis and treatment and then disappear…I’m one who makes no apology for staying…but I do have some ground rules cause it can get addictive.
If you feel the forums are helping you Alise then keep coming on, but maybe you could also think about some one-to one counselling. Its really hard when others tell you to ‘move on’. Also search this site for a brill article by Peter Harvey called After Treatment has Finished. I think it might help you and the people who are telling you to ‘move on.’
I first had BC 17 years ago and sadly there were no support groups then. When it reappeared this April I was really happy to find this site and have found it enormously helpful. It is also good to be able to offer support and hope to newcomers. In 5 years when I have finished my Arimidex I am sure I will still check in. It has now become my “club” so to speak and if I can help anyone then so much the better.
Hi Alise,
You’re not alone in thinking this. It’s crossed my own mind quite a few times recently. I think I’ve become addicted to “checking in” and probably need to find some other non BC sites for me to focus on. My experience of this site is that I logged onto it when I was considering having a second attempt at reconstruction so came here on the tailend of things so to speak but I have found it wonderfully supportive. It came at a time when all my friends and family wanted me to move on but I needed to engage with women who understood how I was feeling. I also had the opportunity to make a friend via this site who was able to explain, in detail, what my recon op would entail and we still keep in touch. The replies to my first posting here really helped me but now 9 months down the line and 2 operation cancellations later (!), I am aware, for me and this is of course entirely personal, that it may be time for me to move on. However, as some of the other women say here, it’s important for those at the beginning of the journey/experience to find out our experiences and to offer any advice where we can. Also, I want to wish everyone all the best if they are currently undergoing treatment, at whatever stage of the BC journey they are at.
BethXXX
When I first started checking out what was on the internet, I would spend up to two hours going through all the sites for breast cancer. Now I am regular on three, lurk on another two, but every so often check out the others. My feeling is that people feel the need to communicate with others in a similar situation and that they find the place that somehow suits them best. The other aspect is that you do find that information on treatments, supplementation, nutrition, side effects and problems is more available in these sites than on the official ones. I rely on them for news about advances and developments. I will continue until there is no need. To me it is important that I can read about others and their experiences, while being able to share my own.
YES!!! - I only found this brilliant site after dx, 2 surgeries and chemo, some 4 yrs ago. It then became my lifeline, as I don’t have any close friends where I live in an isolated Fort in Cornwall to talk to, who can understand bc or indeed wish to talk about it. So, I don’t, and come on here when I need to express myself. I only have one close relative, an elder sister, but she operates on “simplex” rather than duplex, and is probably terrified she will get cancer, as our father died of colon cancer at 59 yrs and my twin brother of brain cancer at 50 yrs. She is an ostrich.
Along the way, I have lost some wonderful friends on this site, but still have many others to turn to when I have a problem. I cannot begin to express how invaluable this site has become to me, and I hope in turn, that I may have helped assuage some of the initial very serious concerns that women have in accepting and understanding that breast cancer, is not a catch all, but has many different variations.
My husband is very supportive of my using this site, and an American gastroenterology site, where I can not only learn, but can also give my own personal experience of two very different, diseases
Jane, I wish I could have expressed as eloquently as you, what this site means to both of us.
Well, Alise, there is someone on the ‘have I got breast cancer’ board who turned out not to have breast cancer and is still there every day.
My personal view is that cancer changes most of us and that only the very lucky few are able to revert back exactly to who they were before.
The greatest problem for me has been dealing with the attitudes of those who have never had to experience anything major in their lives. I recently returned to work after an 11 month absence to find I no longer had a desk. I was shipped off to a tiny satellite office with no support. I couldn’t understand how they could be so mean to me after all I’d been through. It gradually occurred to me that most people don’t understand and probably don’t even care.
I post here and on another bc website and between the two I probably check in most days. Sometimes you just simply need to talk to people who have been where you have been and ‘get it’. I assume your friends and family haven’t had breast cancer. I assume your breast care nurse hasn’t either. They may think they know what is best for you but they can’t be sure unless they’ve been there.
I take little breaks when it all gets too much but I always come back eventually.
You should certainly all still be on here. I have strayed from Undergoing Treatment. I’m just about to have chemo 3 of 6 followed by rads. Ive got a grade 1 with 4 of 17 nodes involved. I’ve been really scared about what the future holds for me, but looking at the many positive posts in this thread has given me some reassurace. For me it’s the best treatment of all to hear from all the people who have undergone treatment some time ago and have come out the other side. So thank you for this thread, these have certainly helped me. I’ll stray more often now.
Well I have been away so havent logged on for about 4 days.
Very interesting post this and it is a question i have asked myself many a time. Should i still be coming onto BC sites.
I want to help other people though who have been recently diagnosed as so many helped me when i was absolutely terrified when first diagnosed.
I also want to know how some really special friends are getting on in this BC journey.
I have kept in touch with all the 5 women who were on the ward with me having BC surgery we go out for meals which i organise and we care very much for each other. We are all aware that we may not all have a easy journey and it may be scary for us but we would never ‘walk out’ on each other.
I see stayin on the BC site like that caring for each other and helping when we feel strong and finding much needed support when we dont.
Its an individual decision and people who dont have this disease dont understand.
When I felt alone, this site made me realise that I was not. I was diagnosed in Dec 07 and have gone through chemo, radiotherapy and 15 sessions of Herceptin. I have now been told that my Herceptin will stop as my heart is being affected. However, I am so so greatful to have had the opportunity to be given it.
I feel very strange as my consultant doesn’t want to see me until end of 2010! I felt safe whilst undergoing treatment, I hope this feeling continues. I still feel so connected to everyone on this site and will continue to “pop in” every now and then. I have arranged to meet and have coffee with a lovely lady I have met on this site and I cannot thank you all enough for all the support and empathy shown.
It is precisely because of the people around you expecting you to ‘move on’ that you need to return to this site. I found this forum in early 2004, soon after a long year of treatment had finished and what a revelation it was! Friends and family are keen for you to have recovered, there is a reluctance to talk or listen to your fears and insecurities.
I still read and occasionally comment on here every now and then. I would feel very isolated if I didn’t. I have always found something useful, educational or supportive for every stage of my cancer ‘evolution’! Don’t you think it’s weird that people think this place is bad for us? x
I’m still a regular visitor to this site even though I post less frequently. I’m 18 months post diagnosis and just about to finish Herceptin. I find this site hugely valuable as a source of support to me and I really value the input and opinions of many ladies here some who are extrememly knowledgable on the latest research and interesting articles which are out there as I’m not a natural ‘squirrel’ and don’t go out of my way to dig up the latest research etc. I’m really grateful to those people who share their latest findings with the forum. Also I’ve found that on a personal level I discuss my BC less and less with those around me preferring this site as a source of support. In his article on the end of treatment Peter Harvey raises the point that many well meaning friends encourage us to ‘put it all behind us’ and share our relief at ‘never having to think of BC again’ (yeah right!) because that is how they want us to feel and it makes it easy for them to not have to think about it or feel uncomfortable talking about such a difficult subject.
I agree with chalee - weird that people might want to discourage visiting here no matter how long past diagnosis xx
I agree with you eal69eal.I have been onto a few sites and listening to other people helps greatly knowing “your not the only one feeling sad and down regularly”.I have been very fortunate compared to others,its been 6months since I was diagnosed and 3months since rads finished and apart from 8weeks of severe headaches and hot flushes constantly now,because of se of Tamoxifen I have been very lucky but as you say people think alls well just because treatment is on hold just now and think you should go back to your normal self when your really churning inside!Its great to just go on here and let rip to others when your down,always a sympathetic ear and no one judges you where my family sometimes dont seem to understand.Great to be in touch with you all.Take care.Joyce.xx