Anyone on here most days after 2 years?

Hi All

I am 2 years 3 months past dx and finished all my treatment in June 2006. I am supposed to have a " very good prognosis". ( No nodes, clear margins small lump etc etc)

I have really struggled mentally with it all and during treatment was on the verge of a breakdown.

The thing is I really feel like I should move on but I can’t. My friends and family think coming on here is detrimental after all this time as it just churns everything back up. My husband is at his wits end as he wants to see it as a hideous nightmare that is now over. So - I just wondered is anyone else on here most days this far down the line? Do you think it can do more harm than good at this stage?

Love and Luck to All

Alise x

Dear Alise,

I’m not quite as far on as you - 15 months post dx and finished treatment April 07. I do know what you mean though. I like you had no nodes, clear margins, small lump, no chemo just rads and tamoxifen but I have also struggled with it mentally. Also like you everybody thinks its all over and I shouldn’t look at this or other websites to do with BC. I have had a little counselling and some reiki sessions which made me feel better for a while but then it all comes back. The counsellor said you can feel like this for years which is ok but it’s other people that don’t understand. I do have a close friend who is having BC treatment now and she says she now knows how I feel but didn’t before dx. I do think it’s a time process though.

I too wonder about coming on here as when we go on holiday I don’t access the site and don’t seem to think about it as much and feel better but as soon as I’m home I’m on and it getting depressed again although it’s also a comfort. It’s as though it’s addictive. I was offered anti depressants but don’t want to take them if possible. I have recently started doing more work and I find this has helped to focus me on other things more.

Other than sympathise with you and say “I know how you feel” I don’t know what the answer is. The thing with BC is that it’s high profile and if you want to try and forget it’s hard. This is great for raising awareness and funds for research etc but it’s always in papers or magazines.Yesterday when I went to buy Mothers Day cards I picked the onesI liked , turned it over and on the back is the pink ribbon and a donation is being made to BC charities! Even in W H Smiths I can’t get away from it!!

The only thing I can suggest is try not to come on the site for a few days and see how you feel.

Hoping you start to feel better soon.
Take care
Shorty xx

Hi Alise and Shorty

My dx was 18 mths ago and I am the same - early stage, small lump, op/rads/tam yet am on here every day (this is me coming online for a quick “fix” at work despite knowing I will log on again when I get home.) I also have found recently that I am starting to look through the Secondary/recurrence sites and am getting caught up with those threads as well as those discussions such as this one. If I start a sentence to friends “oh, on the forum I saw…” they roll their eyes and say “You’re not still going on there are you?”. I try not to talk about it now, to be honest.

I dont know the answer either.

Love Laine

Hi Alise, I am 5 yrs from dx in Jan 2003, but still come on this site most days. I didn’t do any research at all when I was being treated (2 surgeries (WLE and total axillary removal, chemo and rads) as I was too busy dealing with a flare of Crohn’s. I have learned so much from this site i.e. the different forms of bc, all the acronyms that were like a foreign language on my path reports, the various drugs available, what herceptin was about etc. There is a wealth of experience and knowledge on this site that I don’t find anywhere else. I guess this is about keeping myself informed. I also try to help other posters, as and when I can, as I have been deeply appreciative of the care I have had from some very highly intelligent people, like ChristineMH, JaneRA, and the inimitable Mole, who always brings a smile to my face with her witty and pithy comments. My husband knows I use this site frequently, and a US gastro site, but makes no comment whatsoever. He is happy for me to be who I am. We don’t discuss breast cancer any more, unless I have a hospital appointment. I don’t discuss it either, with my friends, as they believe I am “cured” - NED is enough for me at present.

I personally don’t think any harm has been done to myself in using this site, researching and learning about bc, but if it makes people depressed, perhaps they should take a little “time out”, especially if it is causing concerns with a partner.

Take care, and don’t feel guilty about coming on here - just don’t discuss it with your partner would be my advice.

Liz.

I don’t find the site depressing - indeed I often find it heartlifting when I read of some people’s stories, which are far more serious than mine, especially those with secondaries, and the way they are coping with their illness, often a job and kids too. I am frequently amazed at the depth of the human spirit and how we overcome adversity.

Well I confess that apart from holidays I’ve been coming on here most days since February 2004…which makes it 4 years. I was NED for 2 and a half years of that time, but then got recurrence.

For me sites like this are therapeutic…sharing ideas and information as much as support. I think maybe I use this site as a sounding board more than others do…I’m actually quite private about my support.

Since the moment of my diagnosis which was never a very good one (and was 4 months before I started using this site) breast cancer has been part of my life…something I am still learning to live with me and can’t now forget I have to. Some people need to ‘move on’ after primary breast cancer. For others of us we need to integrate the meaning of having breast cancer into the rest of our lives. So I’d say Alise its up to you whether you feel it helps you or not. I don’t think sites like these are a substitute for one to one counselling which I have done on and off since diagnosis.

best wishes to old and new forum junkies.

Especially Liz…just read your lovely post…thank you…and spot on what you say.

Jane

Maybe its a good thing that we are still coming on here years down the line as it shows that we are still going and that in itself should be a help to the newly diagnosed. I know that when I was dx I appreciated reading about people who were surviving, whether that was 2 years or 10. I understand that most people leave here once treatment is over (unless it comes back!) and I think thats a shame in a way as its easy to get a bit down if there arent many success stories - and by “success” I mean the fact that we are still here! The only names I see from when I was dx are Jane, Lizzie, Alise, Mole and one or two others. I often wondered what has happened to the rest of the 2005 lot!

Love to all
Laine

Dear Alise. . I have been coming onto this site very much ‘on and off’. When I was first dx in 1999, I did not have a computer and did not even know about this site, but managed to get support from friends and family, the BCC helpline and the BC nurse. Although I must say, I did not do much research and/or reading of relevant publications, apart from a couple of books which the hospital gave me on reconstructive surgery. But since I had a recurrence, the picture has somewhat changed and as I had a computer by then I did a lot of reading and research and also became involved in this and other sites. I find that I go months without logging on and then when something is amiss , I am having a bad time or I am having more tests etc. I come back on again. I have found this site extremely helpful and supportive and managed to gleam a lot of info , which meant that I could talk knowledgeable with my oncologist and GP. I too , like Jane, have to come to term with an uncertain future and have been feeling very low lately, partly being the winter, partly because I had to have a lot more tests etc. My OH knows I use this site and is happy for me to do so, especially as he knows how much valuable information I gain. I am also heavily involved with BCC on their ‘cancer voices’ and have been involved in various research projects, so BC is never far away.

But I know what you mean about getting depressed, particularly if you have a very good prognosis. As the others have said, maybe not go onto this site for a while and see how you are coping. And of course, as we have said on a lot of other threads, you don’t have to read all the sections that might worry or frighten you. And if you are really struggling, I really would suggest that you discuss counselling with your GP. I’ve had a session of counselling (arranged throught he GP for 8 weeks) and it has helped me tremendously.

Wishing all of you the best of luck.

Birgit

Thank you girls - interesting comments.

Laine you mention the 2005 victims (!) and say there are only a few of us still on here. I mentioned this to my friend (who had bc 8 years ago and would NEVER dream of coming on here ) and her reply was " Well yes bcause the vasy majority of women just get back on with their lives!". If she hadn’t have had it herself I would have quipped “Easy for you to say” but she has - so it did give me food for thought . . . . .

Love to all

Alise x

Hi Alise

Let me reassure you that many people find trying the stage when treatment is over and everyone expects them to ‘get back to normal’ very difficult. It might help you to look at this Breast Cancer Care pamphlet (from page 24 onwards) which has a section on coping with this.

breastcancercare.org.uk/docs/bcu06_web_0.pdf (page 24 onwards).

Also, have you thought of seeing if your GP can offer you counselling to come to terms with your feelings? Many people find this helpful at this stage.

Everyone is different as to what they get from these forums, some visit once, others stay for years. You are welcome here Alise as long as you need us.

I have posted this for new user Linzy
Jo, Facilitator

Hi all

Am a new user to this site being diagnosed and treated five years ago - maybe that the reason I am here soon be given all clear but it good to know that there are friends out there with the same thoughts etc. I try and stay positive but every now and again you do get down and not everyone understands especially when you look so well. Think just keeping abreast of stuff is useful not detrimental at all.

Love to all stay well.

Linzy

Hi all

I am also one of the class of 2005 and still pop in most days. I have found it very therapeutic to hear the stories of all those who have been experiencing similar issues. For the most time I am trying to get on with my life. I am back at work full time and for the most part try not to dwell on my diagnosis or prognosis - but I too have valued the discussions even when I haven’t taken part in them

best wishes to all

K

HI

I was diagnosed Aug 2003 and found this site Jan 2004, I was on here for 4 hours the first time as I loved it so much! I have been coming here nearly everyday since, in the early days it was such a good support. I use the site now more for offering support and for keeping myself upto date with developing treatments.

Becks xx

I was diagnosed back in Dec 05, found this site soon after and am still a very regular visitor. I was 37 and desperate to find younger women and other woman with bad prognosis like mine. This site fed me the info at the begininng which helped me question my Onc and still gives me the ability to talk to others, ask questions and voice my fears with people who know what I am talking about as they are facing their own or come through that same dark patch.

I personally feel coming on this site has helped me no end, I hated having to have mastectomy and refused point blank to discuss it and haven’t been particularly honest about my prognosis with family and friends, dont want pitiful looks or to be that person who talks non stop about cancer, I have no problems with them knowing the basics but thats enough for me, I use this site for my BC talk and when I am at work, out with friends or at my kids dance shows or football I dont need to talk about, I can just be the work mate or mum.

I agree with others above dont think there is anything wrong with using this site years down the line if it is doing you good.

Debbie x

I am one of the 2005 and although I do not post regularly do log on most days - quite good prognosis 2cm, stage 2, no lymph node involvement but extensive vascular invasion which I find hard to live with. Try not to talk about it much at home but it is with me every minute of every day - Everyone is different and we all cope with things in our own way - if logging on to this site helps I can see nothing wrong with it - Sandra x

I was diagnosed in 2003, logged on for a while, then as they say “moved on” and didn’t use the site for a couple of years. Then last year I was diagnosed with another cancer, supposedly nothing at all to do with my breast cancer, but just “bad luck”. This has shaken me and brought everything back; I have again lost all my security. I have been logging on to this site almost every day since December (I also visit a similar site for my other cancer on a daily basis). I feel like I am becoming a cancer activist and want everybody to know how it feels and what it means to be a cancer survivor. I have learned so much from other people on this site and also feel I can possibly help a little by occasionally offering advice and support to others. I have also wondered at times if I might be developing an unhealthy obsession, but I don’t think this is the case and I agree with Sandra that there is nothing wrong in logging on if we find it helpful.

Hi Alise
What a brilliant thread.
Wow so many of ya i recognise posting on here.
I am one of the 2005 ‘unfortunates’. I say that as i definately think we are unfortunate to get BC.

Recently I have thought about quitting BCC as i have been trying to think of myself as ‘normal’ ‘well’ and not someone who is living with a possible re-occurance. I have thrown myself into courses, joined an agency and worked quite a lot. Looked to the future and holidays etc. so why am i still here? A few reasons, firstly no one understands how everyday we live with the fear of a re-occurance.
There is a empathy with other women who have had BC. We take a personal interest in how others are doing. I know with me i look for certain folk on here and follow their progress. Now the thing that has really kept me on here I am in agony at the moment and i know others will give me advice about seeking medical help and also with the fear over scans and results

I have met the most amazing friends through BC and they in many ways understand me as i am now.

I am definately not obsessed with BC, but it has changed me and my life and if i am honest I HATE IT.

Keep Posting Everyone
Rx

Another 2005 joiner - still checking most days.
Don’t often contribute now - but do like to see familiar names, and hear how people are doing.
Also curious to see how treatments are changing - even after only 2 years I see so many more ladies being offered Tax chemo now. I really had to push hard for that in 2005. And always interested to read about any new advances in hormone-therapies etc - since thats still with me every day and will be for another couple of years yet.
BC is no longer part a regular topic with the rest of my family, and that’s fine by me, I don’t want people worrying about me/it more than they have too. Learning to live with the remaining risks and fears, day to day, is now very much a personal thing. BC won’t ever go away, and I can’t ignore it, so these forums are a refuge for me.
Best wishes to all.

Dear All

I was diagnosed in Oct 2006 and I didnt find out about this site till I went back to work properly in Summer of 2007. I dont have a computer at home so can only use this whilst at work.

I honestly wish that the drs and bc nurses had told me about the site as soon as I was told. It would have saved me so much grief, I was terrified and relied only on the leaflets given to me by the hospital etc. This site is brilliant, and i will continue to read through the threads which sometimes are so moving I bawl at work!! I have two acquaintances who were diagnosed several months after me, and they ring me for advice, and I’ll tell them go on this website, it really does help.

With regards to secondaries, I dont tend to read those as I think I may start imaging the worse, and Im sure Im fine now.

If the people on this site cant talk freely about their treatment, where can they? I thought my drs were too busy at times to explain stuff to me too often, so i have found it invaluable.

Thanks again

Anne

Glad I’m not on my own.

I still have bad days and come on here to find I’m not the only one.

Diagnosed June 06

Marilyn X

I was also diagnosed in Sptember 2005. Had chemo, masectomy and radio. Just had a reduction. I still come on the site. I suppose once touched by cancer, it can never really go away. I learn a lot from the site.