too be honest I have never found this sight that helpful,I have asked quite a few things in the year and a half since being diagnosed and not even had a single reply,I have been involved in a DISCUSSION about people getting the all clear from doctor but being told on here that you can never get the all clear from bc and I know this same person will respond with something negative to this but I dont really care anymore,I am clear,I have had every scan going and a double mastectomy and I DO NOT HAVE IT ANYMORE.there were a couple of people who wrote in the previous argument that they agreed with me which was great but to be honest there have been more times when I have been on here and my hubby has told me to come off because of some of the things that are said and even though a couple of things have been slightly helpful I feel more depressed when I have been on here.Sorry.Maybe I am too honest.
I suppose you will remove my post now because I have said something negative,but I think you should look at what other people are saying before you do and remove these
debbi -well posted
Cherry
Hi Debbi,
Well I am replying. I tend to think that we are all individuals with our own views and I am genuinely pleased that you do not have cancer anymore. Whats more I will look forward to the day I can say that too.
I am sorry you have felt more depressed when you have come off the site, I tend to read threads, contribute where my positive thoughts lead me and pass over those that seem to deep or where tensions run high. It is the ‘sit on the fence’ attitude I have that stops me becoming too depressed when reading the thread, after all the variety of experiences is quite overwhelming.
Carol
No Debbi,
I feel crap that you feel that way - I don’t think that just because you said something negative, it will be taken away. Lots of us feel negative and post about the way we feel and we value your thoughts - God that sounds rubbish. All I can say is that I have a VERY good prognosis but it has taken over my life completely - my life willl never be the same and I really have trouble being sympathetic towards those who have what i percieve to be trifling worries - I wish I had them now. My partner, who’s wife died of BC some years ago, hates me being on here - but he’s a typical man who won’t talk about anything - to the extent that his children wanted to light a candle on her birthday and he said no, he didn’t need to do that. I have to say, candles are being lit.
Debbi - say what you want - I’m sorry you’ve had such a crap response. It’s just rubbish, this BC stuff, isnt’ it - where are you, I’m in SE London.
Love,
Sally xx
I am in suffolk, and I have not dissed all the responses on here and dont get me wrong,I am not depressed as such and I love helping people and I feel lucky still to be relatively healthy and alive but the negative response you sometimes get on here makes things worse,i amALWAYS scared that it is going to come back and I will leave my children without a mum and my hubby without me but you are supposed to come on here for support and I dont feel like I get any.But I dont get any in real life either because I have moved twice since being diagnosed my hubby is in forces and I sit in the house all day every day on my own,since moving from scotland where I was diagnosed in feb last year I have had no contact with a bc nurse ,except when I phoned my old one in scotland and I think people are scared to get to know me,I used to be outgoing and loved making myself known to people but if I do that now breast cancer always comes out and I think people shy away from it.
to cb102 I only say that I am clear because a full body scan never showed anything up but how do you truly know that its gone,I feel ill most of the time and think is it the medication or is it here…somewhere else…
sallylou
your partners ex died of it and you have had it to?How are you now?Thanks for your reply and you cb102 xand sally of course they have to light a candle.God …life is bloody awful right now.It does take over…good prognosis or not…
Hi Debbi
I too am so sorry that you feel the way you do, I must admit there are times I come on here and leave feeling negative but I think that is probably how I feel anyway and maybe I dont find what Im looking for. But I can fault the support Ive been given on this site and feel really sad that you dont feel the same way.
I will admit that if I dont think I could give any positive advice on a posted thread then I would probably not leave any comment which I now feel is wrong but it is only for fear of saying the wrong thing. Just a friendly hello is better than no reply at all, maybe we should all take note.
So once again Debbi sorry that your experience hasnt been great but I hope that we can rectify that.
Hugs
Karen
XXX
Hi Debbie , sorry you’ve had negative feedback
After I had my 2 x wle I told myself and everyone I didnt have it anymore too. Thats what the BCN told me too and thats what I want to believe. I have fear but I know I cant live that way as it will destroy me mentally . Its hard to train your thoughts but I am definitely in your club. have finished chemo today and starting rads april.
Whenever I push the oncologist of course they cant give 100% assurances, he just says its possible but unlikely so I’ll go along with that.
Cally
Oh debbi - my heart truly goes out to you tonight, reading your posts. Please don’t dismiss this site - I have posted a couple of times about my bc and Crohn’s problems and not got a single reply. Perhaps people just don’t know what to say at times, or they have not walked in our own shoes.
The “cure” - well, I am now 5 yrs since dx, and I had lymph node spread, so not a very good prognosis, but just had an annual check up and I am NED. However, I am under no illusion that I am cured - it can always come back, but we cannot let that premise dictate our lives. I seem to live a very isolated life, deep in a forgotten corner of Cornwall, with a 79 yrs old disabled husband who cannot walk more than 30 yards, but we do not let our medical problems dictate our quality of life. There are some 103 apts in the old Fort where we live,most second holiday homes, but honestly, we can go a week without seeing a living soul except the maintenance guys and the cleaners. Luckily my husband is really into computers - his brain has not atrophied like his legs, and he has lately learned to cook. I have always found there is a silver lining somewhere - you just have to look for it.
Take care, and if you need some emotional support, lots of us are here for you.
Liz.
lizziecee
I wish Ilived in a remote corner of cornwall with you.How old are u,if you dont mind me asking,I dont mind,I am just asking.I am lonely and I hate this.everyone thinks I get on with my hubby but i dont really,I hate being married but what else is there for me?If I leave him I will be bringing up our 7 year old on my own and what if it comes back.The reason i hate being married is bickering,bickering and more bickering,I am hanging in there for my son…thats all…
Hi Debbi
I am so sorry reading your last post which probably explains why you are feeling so rubbish. There are always ways and means to get your life heading in the right direction. Apart from us have you told anyone else how you are feeling? Do you have any family that you can talk to? I know that that is not always easy, I spent far too many years with my ex hubby rather than tell mum and dad I had failed - looking back now I cant believe I did that but when you are in that position you cant see the wood for the trees. Also every time my parents said something bad about him I felt I had to defend him when I really didnt want to.
Have you had any help, support, councelling etc to get you to were you are now? Even though you have moved around is there not a special person that you could confide in.
Sorry I cant be of more help
Hugs
Karen
XXX
I believe in the power of negative thinking. the world is an uncertain place and unfortunately breast cancer made me realise I wouldn’t live for ever. Which I did not want to know at age 48. But there we are. At least now I know there’s a lot of crap out there I don’t need to worry about. And I don’t care what other people think as much.
Sorry about your husband and you but maybe you could improve your relationship. Or you could change things by leaving him. It’s not that great living on your own though, I am writing this in my house where I am in this position. sometimes I long to have someone to bicker with but not this morning. Today I am looking forward to eating my breakfast and the day ahead.
Mole
Hi Debbi,
so pleased others have responded to your plea - no matter how down you feel, you can always get some support here. I think bc changes our whole perspective on life, and I don’t sweat the small stuff any more. Just living is challenge enough. I only have to look along our hall and see a guy in a wheelchair, and know my medical problems are nothing compared to his. He takes his little scottie out for a “walk” a couple of times a day around the Fort, holding him by the leash. Very humbling, as this guy is always cheeful, with a ready smile. I love to cook and often make him a nice cake as his wife doesn’t cook and they live on ready meals.
It is amazing how if you reach out to someone with kindness, it comes right back. When I was having my axillary removal surgery, I had to be in hospital on a late Suday afternoon, in the winter. My husband was waiting for 2 cataract operations and couldn’t drive me the one and a half hours to Plymouth in the dark. The neighbour offered to take me, even came right into the ward with me to make sure I was settled. She is in her 70’s.
That simple act of neighbourliness has led us to be friends - not close ,but enough to help out when needed.
I am 63 yrs, my husband 80 in August, and although at times we feel like recluses, I have made a social life for us within the home as we have a rented studio holiday apt here, and visitors come back 6 or 7 times. Some have become good friends and join us for dinner at home or we go to a local restaurant/fish and chippie. One of them has even designed our website and won’t take any payment - he got a case of wine in the post!
I left a very physically and emotionally abusive marriage in my mid 20’s having been married for 7 awful years. |I had to call the police one time, but they just advised they could not intervene in a domestic situation and told me to leave him. I am convinced my Crohn’s, which started then, was caused by the daily stress of living with a psychopath. He went on to try and kill his 2nd wife and 2 kids with a crowbar and got a life sentence, so I am glad I left when I did. My parents didn’t want me to marry him, but at 19 yrs I was headstrong and thought I knew better. I have had a wonderful 35 yrs of marriage to my 2nd husband, who has always treated me with love and courtesy. Life is too short I think, to spend it with someone you don’t even like, never mind love.
I wish I had some words of wisdom to help you.
Take care,
Liz.
thanks for all your words of support,I do love him… I think…but I just feel too tired to argue and think life is too short,I have lived on my own as a single parent for 5 years…I was married before to a loser and was left with my other 2 children and it was ok but lonely at times,My son now loves having his dad around and because I have lived at both ends of the spectrum I am chosing to keep it together for him because I know my other 2 sort of missed out not having a proper dad around.I feel a bit mean to my hubby when I say I dont like being married because he does try really hard and is supportive,its just the bickering it really gets on my nerves but I dont want my son not to have his dad and because we are a forces family if I did leave it would be difficult for him to see him.Thanks once again for your kind words xNo I have not had counselling and I do not have anyone that I could talk too.
Hiya Debbi
I was sooooooooo pleased to read your post as it is usually me who goes against the people who say that being positive is ‘naive and ignorant’. I truly believe in the power of positive thinking (the mind is a very powerful thing) and if we choose to live our lives like that, what right do people have to tell us we are wrong? I also agree that we do not have cancer, yes we might get it back, but at the moment we do NOT have it! When I went for my results, the surgeon told me that the lymph nodes were clear and they had clear margins. When I asked her what that meant she replied ‘it hadn’t spread, we got all of it out - it’s gone’! Well, I’m sorry if I’m being naive or ignorant, but that’s good enough for me. I had a ‘discussion’ about posting negative comments and statistics on the Newly Diagnosed thread. I was so angry that the poor girls who came on here for reassurance and support, had to read something that, quite frankly, would have scared the s**t out of me when I was newly diagnosed. As I have said MANY times before, if I want to hear statistics then I’ll ask. I fully expect to get my arse kicked for posting this, but it’s important that you know you’re not alone. Yes, there will always be ‘bad’ news and we can choose to read it or not, but please ladies, if someone wants to be positive and believe they don’t have cancer - let them be! If I read that someone is feeling negative I would give them support and try to reassure them, so why should we be criticised for being positive?
I’ll budge up Debbi, you can sit next to me on the naughty step.
You go girl, I’m right there with you.
Julie x
Julie - what a lovely supportive message to Debbi. I’m with both of you. My sister is now 2 and half years down the road - had lousy prognosis but as soon as her treatment finished had a scan NED. She now tells everyone it’s gone and so do I. It has gone, at this point in time. We’ve all learned as a family to live firmly in the present. It’s the only way to live anyway, you only ever have the present moment.
Well done to both you ladies for for your comments.
Hi jez(julie)
The discussion I am on about was posted not long after my diagnosis and this poor girl had written yippee,my doctor gave me the all clear today,and this particular person,who by the way has posted on this very thread like I said they would,said I am sorry but you can never be free of this disease,well oh my god I was so angry,I put my comments in like we all might as well give up now then etc and I said if someone came on here for support and read those comments they would think life is not worth living,do you know what I mean?People come on here for support,and yes,I know there are negatives but if you are feeling negative and like feeling like that please keep your thoughts to yourself so everything you said julie was bloody right and somehow I think we are gonna need a very big naughty step because I know that person knows who she is and will reply to this.Send me a private message if you want…i.e.who you think is so negative.Its that very discussion that has always made me think…what if it comes back…even though I HAVE NOT GOT IT NOW.I could not go on for a few weeks because I didnt want to argue and read negative comments. take care,and budge up quick will you,i feel more rants are on the way. tee hee.x
Hi Debbi
I was directed to your thread by another girl who was moved by your comments and I would just like to say good for you about the positive thing and so sorrythast you have felt unsupported. I still feel like a newbie, dx 24th Dec and quite often feel like posting what I feel as good test results may be inappropriate. Fortunately I have made friends(cyber) with some fantastic women in here who are going through far worse treatment programmes than me who have been nothing but supportive of my good results. In fact quite a few times I have had “nice to hear good news” and so forth. Sometimes it drivesme mad when a none BC friend says just think positive thoughts but I would have been devastasted when my WLE/SNB results came back as clear if someone had posted a negative thought.
Its a fine line between support and information. I really feel badly for you for being upset but really feel happy for you that you are BC free. I think I may be joining you on that step and I too feel like now the tumour has gone the margins are clear the nodes were clear I am BC clear too. OK I am on rads at the minute tamoxifen and zoladex but as my oncologist says that is to stop it returning I can only assume it has to have gone in the first place for it to even have a chance of returning???
Good luck with everything and hope you and your hubbie work it out. Just remember why you love him in the first place. I left my first husband when I realised I couldnt even be bothered arguing anymore so you can always look on the bright side and think at least you still care enough to bicker about somthing in the first place. Sorry if that was a bit Pollyanna for you. Shove up room for 3 on that step??
Shonagh xx