dear pash, I am so glad you are coping well with you’re mastectomy and hope you are now at home and recovering. As usual, any post that implies, intentionally or not, that the ability to keep upbeat and positive affects your outcome, as though our journey with this disease is somehow controlled with our ability to be strong, has provoked strong feelings, that are important to air. I never had a mastectomy as I was diagnosed from the start with secondaries, so live with the tumours in my breast. But I don,t for a moment think my diagnosis or progression of my disease is down to an inability to be positve or create my own luck, and I guess that suggesting that it can be, may make some of us feel like failures. So I hope you can see how some of the wording on your original post, i’m sure unintentionally, has made some people upset. Everybody uses different coping mechanisms at different times, and none are wrong or right. I’m glad yours are working for you, and I hope that everybody using these forums stays sensitive and respectful to all our different views and experiences.
nicky
This topic title has bugged me for days!
Just a bit of background! Im 32, grade 3 BC and just finished active treatment WLE, chemo and radio and have gone through it all with a 1 and 2 yr old.Its not been easy.
Everyone is entitled to an opinion its true. It is a free country but sometimes you do need to stop and think about what you are saying. I am a calm and happy person but this whole "i am entitled to my opinion and ill give it whether you want it or not " has never sat well with me.
Just imagine a post title saying “chemo a doddle”. How would that make everyone feel on here?
Anyway, cant say i have ever moaned about a post before! Its certainly opened a debate…
Sue
Like Nicky I too was diagnosed with secondaries from the very beginning and I too have my tumour…and breast…6 years on from my stage 4 diagnosis in 2003. Weird what you can (sometimes) get used to…eventually.
Since my diagnosis I have (honestly) never had a day in bed…this is not down to any attitude, input from me…just very lucky responses to treatment, so far.
I’m glad you have found your treatment, your operation so very doable Pash…I can also see how the wording, the heading may well have upset others…a while ago it would have probably upset me but I’m less drawn to these forums nowadays, I feel less involved…(in a good way!)…real life is happening away from these screens. All posts, ones we agree and disagree with will all eventually disappear off the page and meanwhile we all have to live the best we can, make our own decisions, our own choices.
Good Luck to you, Pash, Leadie, all of us. Is it too early to wish everyone a very Happy Christmas?
Happy Christmas…Love Belinda…x
Oh Lordy just read all of this thread…Pash maybe you should have made the title ’ For Me MX was a doddle’ !! just a thought
Rhian x
Thankyou Jane, i have just been for appt with surgeon and mastectomy is planned for the 5th january, following last chemo on the 9th dec. Wow im scared now, the surgeon says as i am having radiotherapy, they wont be doing immediate reconstruction, but can do it 5 months after radiotherapy. Shes referring me to plastic surgeons as i have said i would like a diep. She was a lovely, funny, down to earth lady, she told my partner he should get me a good christmas pressie as i have had such a cr***y year, made us chuckle. She said too they are removing all the nodes, and that my strength isnt gonna be the same, im slightly worried at what level i can train again, but in the grand scheme of things if it saves my life, i will be grateful for that. She said to that the pain i am getting in the tumour is more likely inflammation caused by the chemo and that she doesnt think its the cancer worsening. But on a negative note she agrees with me that it is still fixed to the chest wall. My oncologist had thought it wasnt. Fingers crossed that when they operate they find that the chemo has worked, that would just be the best news. I am also worried about how im going to feel looking at the wound afterwards, i wonder if il get away with not looking for the whole 5 months?
Do you know whether it really is life saving surgery?
Don’t forget surgery is in itself “diagnostic”. People have refused to be mutilated but still lived. One woman on BCPals refused surgery for 3 years and is still around …
hi, but would that mean constant chemo to stop it spreading further? i am triple neg, so its not like hormone treatments are an option. I know that surgery will tell them a lot, and to be honest that scares me more than anything.
Hi Anna
Like you i had chest wall issues and in my case they could not save the breast due to widespread cancer. I know that WLE may be an option for some but not normally if the cancer is large etc. The question is are there any options for you? You need to let them know how much the thought of mx upsets you because once the breast is gone it is gone forever. If saving it is not possible then you need to focus on getting through.
I think that it is a very difficult thing for most of us to view the scars - I never have been able to really look at mine, I hate to touch the recon as it feels numb and generally have grown to hate my post mx body, though I was better in the early days after the op. I question whether the surgery was worth it daily because it impacts my quality of life so much. I still undress in the dark and never look down when I bathe. Other people state they are comfortable with how they look, but even they may miss their boobs sometimes. I was shown pictures and I have to say they did not help me at all but some people say they help them mentally prepare.
I don’t want to reassure you by saying don’t worry and it will all be well and you will get used to it -that may or may not be true for you. I think it is important you know the options and that mx is tough treatment, you may have little or no choice in the matter but you need to know that you have explored all options if you are going to live with it.
Bahrons is an expert on lymphodema - you need to be careful with the arm after clearance and she has lots of good advice, watch her posts. I find that I have arm weakness and numbness but whether that is nodes or the LD recon I am not sure. It’s worth getting advice at the gym - I now avoid rowing machines and upper body weights and do yoga, pilates and cardio instead.
Anna - ask anything you need to and be sure to make sure of the hospital support services while they are still available in the peri operative phase.
All best wishes
Love
Jane x
hi thanks again Jane. My tumour is 8cm and i have 1 cycle of chemo to go. It hasnt done much in the way of shrinking it but we will find out at surgery whether the chemo has worked. I think mastectomy is the only option. Reading everyones mixed emotions, i can honestly say that i am not sure how i will react. I will obviously be thrilled if they give me good news but i think i may find the loss of my breast upsetting to say the least. I will read Bahons threads about lymphoedema, thanks for the pointer.
take care
anna
Hi everyone
I think this thread is getting somewhat depressing, in that we all have enough to contend with, without getting into arguments that sometimes come across as a bit acid.
Don’t get me wrong, I’ve said before that I don’t see anyone’s opinion or perspective as being more valid than another, BUT its not worth this sort of stuff.
well, thats my perspective, anyway, for what its worth
HERE HERE DAISYLEAF !
XXXXXX
Well said Monica. I cannot believe that so much emotion has been stirred up on this thread. I think everyone deals with things differently, has different experiences and have differing opinions. I welcome all opinions and thoughts, worries and love it when there is good news to share too. For 10 years I have had no access to anything like the imput on this thread. We cannot just write what people will not be offended by and many of us have not got great communication skills and our abilities to communcate become fuddled with all the treatments, drugs and Cancer itself. Perhaps we are all a bit too critical at times. I do not think anyone deliberately writes to offend others. I am sorry if I have. It is not my intention to do so. Hope you are coping with your treatment Monica. Will PM you soon, love Val XX
Isn’t it sad that this once good news thread with good intentions has now been turned into a down depressing and sad thread.
I agree with all that you have said Val.
I know,I know.Thats three posts I said I wouldn’t write 
best wishes Mel xx
Well, I’ve now read the article/conference report recommended by Gillian (Dr. Harvey’s ‘The Perils and Pitfalls of Positive Thinking’) and could do a critique of it piece by piece if you like (I’m a librarian, I can’t help it!!), but don’t want to stir up any further upset!
The title is deliberately provocative (he says it himself) and I think it all lies in the definition of positive. For me, that is optimism and acceptance. Not denial or ‘happiness’.
One thing he does say that I agree with is as follows:
“True courage comes in the face of fear, not pretending that fear is not there. The bravest people I know are those who manage despite the fear, it is not those who claim fearlessness.” (p.6)
Please assume that those of us who appear happy and cheerful are not claiming fearlessness - we have our moments and our fears and our tears, be assured. Just assume that we are managing, even if that is only ‘for now’. None of knows what is around the corner.
With love
Flora xxx
i was steering clear of this thread because it seems to be causing so much offense but just wanted to say, very well put Flora
Hi Everyone
Like so many others I have read this thread out of interest, curiosity etc etc-----. I haven’t had a mastectomy so don’t know how I would react if I needed one. BUT like everyone else here I HAVE BREAST CANCER. There I’ve said it!!! I found the forum after I had my diagnosis and surgery so came late to all the support I feel I have received both practical and emotional. I felt I could be myself, say what I wanted without anyone critisising and many times after I have written, I deleated my thoughts. For me, the whole point of the forum is to be able to do this. I feel we should encourage others to express themselves in their own way. Whether they appear to be too optimistic or pessimistic is surely not for us to judge. There is a good thread on here about what not to say. PLEASE don’t let us fall into this trap on here. It would be a terrible shame if people felt they couldn’t say how they felt.
Hope I haven’t offended anyone but wanted to say something as I fell we ALL need this space to be us.
Love to all
Margaret
Hi Margaret
I totally agree with you - to be able to express your feelings is a great therapy and the forum as such is a type of counselling service in the sense we try to support and understand each other. If we have to think carefully what we say and tiptoe around all the time, in case someone is offended by our words, then feelings become bottled up and distorted.
Hi Cathy and Margaret
I totally agree with you also, the forums to me should be a place to come to for help/support and understanding but most of all for friendship with other BC patients who understand what having a cancer DX means , surely we should be free to share not only our lows, and our fears, but also any good moments too when we have them. I find it extreamly difficult to understand why a fellow cancer patient would attack another i realy do.
I have always refrained from posting any good news or any positive stories because expierence over the last 3 yrs has taught me that offense will be taken by some and i realy dont want to get embroled in arguements with anyone on here as i dont come here for that . I just believe everyone has a right to express themselves and their feelings good or bad and certainly noone should be judged or critisised for it.
Ive ofen left these forums feeling more down than when ive come on because of some of the negative comments on threads such as this one and thats surely not what these forums were intended for.
Best wishes
Lindiloo
Dear All,
I think it is very important that we have the freedom here on this site to support/befriend/understand and also challenge/get angry with others on their postings. Sometimes it can stir up a lot of feelings.
This thread is a very good example of such a lot of interesting stuff that has emerged from me challenging Pash’s title of the thread. Having BC brings all sorts of positive and negative emotions up,I think it is very important that ladies can express that here and sometimes it will upset others. Sometimes I am moved to tears by some of the threads, or spend a lot of time laughing at the funny things that are posted and yes, sometimes I am furious with what has been written. And ladies sometimes get very angry with what I write. That is okay too and can bring about self reflection on what I’ve written or I may just care to disagree. If all posts were deleted on the grounds of containing angry/challenging threads, this would not reflect us as human beings with all our positive and negative parts of us and would not be REAL.
Best wishes to all
Leadie
Also, by way of attempting to add to the words of reconciliation, please don’t assume that those who want to discuss the actual consequences for them of breast cancer and its treatments are not happy.
If breast cancer presented no challenges there would be no need for forums, and no need to chat and support each other. We don’t, for example, tell people at a funeral to look on the bright side - which would be - less laundry, perhaps.
Having breast cancer places us in unfamiliar territory, and like life, it is to be dealt with. I haven’t seen anyone on here winge or complain. They have only mentioned the understandable fact that breast cancer has for them meant sadness. It is not incompatible with that that they are facing the challenge, getting on with life, happy about the good things.
I get the impression Pash had come to the end of gruelling chemotherapy and it perhaps meant a great weight being lifted, approaching the end of a marathon, the hope of better times ahead. In that frame of mind, like when you stop banging your head against a wall, the relief is enormous. Perhaps it is presumptuous of me, and forgive and correct me if I am wrong, but that was where I thought Pash was coming from.
However, the operation is one thing, its implications for life another; more often than not the operation itself is straightforward and I think that is what Pash was talking about. However, it is not the op itself that distresses many women, but life afterwards. It is a sad fact that the personal consequences of the surgery (for some) are often made light of. I don’t think I have seen anyone on here who is not being positive. But being positive does not mean representing one thing as another - representing sadness as happiness, loss as gain, what is hard as easy.
I think people just want recognition that a thing is what it is and not another thing, and that - for some people - the op is at best a necessary evil. They may be concerned that those for whom that is the case may feel excluded, or that others facing the op may be misled about what it can mean for some. I hope what everyone has said on here shows that there is room for everyone to share their experience even though where others’ experience is different from ours we cannot always understand why they react as they do - it is not always necessary to understand it to share it, and there are thankfully usually enough with common experience on here to find those who do.
People acknowledging their own truth does not mean that they are not meeting the challenges or that they are not happy. Although if they are not happy, they have a right not to be. I think this point is terribly important because so often grief, sorrow, etc are glibly mistaken for ‘depression’ - especially, and reprehensibly, by professionals - when what they are is genuine, meaningful responses to life; we cannot and should not be ‘happy all the time’ in a world like this. So often the solution glibly offered is ‘be positive’, as though inwardly wrestling with a difficult reality while keeping the show on the road for everyone else were not ‘being positive’. Just compare how we deal with our heartaches here and the sort of attitudes we might meet with if this were a hot country. Maybe sometimes being negative is okay.
sno