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VERY CRITICAL

17 REPLIES 17
Moderator
Community Manager

Re: VERY CRITICAL

Hi everyone

I am going to close this here. If you want to continue this debate then please start a thread in current issues. I know that feelings on this run very high and of course people have different points of view but please remember each others' feelings when putting you views forward.

best wishes

Jane

Moderator

Breast Cancer Care

ForumMember
Member

Re: VERY CRITICAL

Wow this is turning into a bit of a debate! That is the trouble with these message boards things can be misinterpreted, what started off as a moan about being told statistics that frankly terrify people newly diagnosed or in the early months of treatment has turned into a total misunderstanding. Nobody and i mean nobody is having a pot shot at people with secondaries, i thought that as i had not heard from anyone on any of the messages that i visited with secondaries that perhaps they did not post on the ones i looked at. Nothing more was intended i assure you and for anyone out there with secondaries i apologise whole heartedly if you felt that i or anyone else on here was taking really low pot shots at you. It was Karen who raised the topic of secondaries and i just thanked her for reminding us to be supportive to people with secondaries.

Suzy

Guest user
Not applicable

Re: VERY CRITICAL

I would also like to thank Karen for remembering this is a charity for ALL with breast cancer and not just those going through or recovering from, primary breast cancer.

Suzzanne, you said "... of course we must support the ladies with secondaries, we are not asking them not to post, they would i think post on the secondaries site." I'm sure you didn't mean to imply that those with secondaries should only post on the secondaries forum, leaving the other forums to the rest of you?

If you only want to see cheerful stuff, perhaps restrict yourself to "Chit Chat and Fun"? I totally promise that I will never post anything upsetting on that forum and I'm sure that anyone else you feel is prone to gloomy postings will agree to the same. In general. you should stay away from any cancer messageboard if you wish to avoid statistics. There is obviously going to be bad news on all such messageboards because we are nowhere close to a cure for breast cancer.

I'm getting heartly sick and tired that anyone can take a pot shot at those of us with secondaries any time they want with no fear of action being taken by the moderators.

Guest user
Not applicable

Re: VERY CRITICAL

my point was nothing to do with ladies with secondaries, it was aimed at sarcastic/negative/ inappropriate and critical responses to discussions from a minority of users on this site .

ForumMember
Member

Re: VERY CRITICAL

Point taken Karen, of course we must support the ladies with secondaries, we are not asking them not to post, they would i think post on the secondaries site. I could not really say anything to someone in that unfortunate position as i am not qualified to. I agree these ladies are wonderfully positive and do hope they will be able to post freely and without fear of upsetting anyone. they more than any of us deserve all the support they can get. Thank you Karen for raising that.

Suzy

Guest user
Not applicable

Re: VERY CRITICAL

Can i also add that if people are down because of postings on here then log onto Our story on this site and listen to the video of the old lady (forgotten her name! who had bc at 39 and is still here and well at 86!! It's a very postitive story and she had none of the advanced treatments available today. It really cheers me up when I watch it.

Love Alise x

belinda
Member

Re: VERY CRITICAL

Karen, thank you, a lot of us with secondaries often don't post all our fears, details, for fear of upsetting others but we try and go forward and live our lives to the full.
The meetings I've had with some of the secondary ladies here have been so full of laughter at times, uplifting and life affirming.
I don't now why I bother to keep coming here as it often makes me unhappy.

Guest user
Not applicable

Re: VERY CRITICAL

Hiya Suzy

I remember the post you mentioned re death etc. It was the one that started me on my rampage lol.

Stay strong (and, dare I say, positive) girls.

Julie x

karen
Member

Re: VERY CRITICAL

I agree this site is for support but unfortunately for some support is needed because they have secondaries, I don't feel we should make these people feel they can't post for fear of sounding full of '' doom and gloom';....there are some very positive people with secondaries and I admire their strength.
I think we just have to be sensitive as to how we reply to people.

karen

ForumMember
Member

Re: VERY CRITICAL

Hi to you all,

I know what you mean exactly, lets hear from the ladies who have positive thoughts on this disease, I have mentioned several times my cousin Jean who had a very aggresive Breast Cancer over 9 years ago, who had WLE followed by chemmo and Rads and who to this day is very fit and active and never ever thinks of BC until it is her 3 yearly Mammo. She has never had a recurrance either so both treatments worked very well for her. I met several ladies at the local BC support group who were well into their 70's and most were over 15 years clear of the disease with no further treatment after the initial treatment.

Not long ago after diagnosis in May, I went onto this site and read about complaints about an article in the paper which offended a lot of people on this site saying that BC should now not be called a critical illness, I read what they all had to say and one person mentioned that most people still died of the disease even those with a high prognosis in the 80+ percentage, as i fall into that percentage i terrified myself, went into total hysterics and my son who lives 25 miles away had to come over at 9pm after a hard day at work and calm me down and reason with me. I am usually a very calm and organised person but the thought of my own mortality petrified me!

I don't go on any threads now that mention recurrance or secondaries or anything that looks like it might scare the hell out of me, i stick to the safer topics like complimentary therapies and how to control the side effects of my drugs. If i do otherwise my son has said he is taking the computer off me!!!

I realise now after talking to my son that statitics are a whole load of bollocks (excuse me) how can you possibly randomly put 100 people in a room, all different shapes sizes, colour, religion etc., and more or less guess who is going to do well and who is not. Everyone of us is an individual and everyone one of us will handle whatever life throws at us in a different way, cancer like people is different for each and every person, to generalise is just downright stupid and dangerous.

Sorry for the rant but I know just how you all feel, we are alive and whether we have had cancer of not we should look for something to laugh about each day and look for something that is good about every single day, after my diagnosis i thought i would never be the carefree person i was before, it took a while but i am still me, i might have got a bit lost along the way but i have found myself again and value the people who gave so much time to come and see me and lift me out of the doldrums when i was so ill, I feel so blessed that these people loved me and worried about me, i had not realised before i was ill how much people did truly care for me.

I look forward to getting my bus pass in 6 years as now you can travel anywhere on the country on it from next year, what a blast i will have shopping at different towns every week!

Love to you all
Suzy

Guest user
Not applicable

Re: VERY CRITICAL

I completely agree!!! I'm almost too scared to log on and read anything now but curiosity gets the better of me - I sat and cried all day yesterday after being on here (I'm sure the steroids didn't help either!!) 🐵 x

Guest user
Not applicable

Re: VERY CRITICAL

I have posted many times about people quoting statistics and have probably made myself unpopular with others. I totally agree that, if we want to hear statistics we can ask the professionals. This sh**ty disease is scary enough without reading something that you've avoided for months. I have been told that, because I'm remaining positive, I'm either naive or ignorant! I've even emailed the moderator to no avail. Someone once posted a lovely thread about how she thought she would never see a rose bush again and years later she is still enjoying it. This lovely lady was then more or less brought down to earth with, in my opinion, totally negative and hurtful comments (I don't think I've seen a post from her since). PLEASE ladies can we read properly what people are posting and if they need reassurance, can we act accordingly. We are not stupid, we know the possibilities of this disease, but if we want to think that remaining positive helps, then please leave us alone! This site is (or should be) for support and if we want to hear statistics, then we'll ask. If someone really wants to know, maybe they can PM a knowledgeable person.

I've probably said too much now (again), but this is something I feel very strongly about.

lindsyloo
Member

Re: VERY CRITICAL

I am in total agreement to all the above. This condition is bad enough without us scaring each other even more love Linda x

Guest user
Not applicable

Re: VERY CRITICAL

Yipee Carly..well done. Hope your upbeat attitude comes back....SOON!! A x
(from a fellow triple neg) A xx

Guest user
Not applicable

Re: VERY CRITICAL

I agree!

Too much doom and gloom - I Think the moderators should censor some posts full of depressing statistics which just scare people.

Love ALise x

Guest user
Not applicable

Re: VERY CRITICAL

Hi Ladies
I agree. I have triple negative C and some of the comments have feared the life out of me. They have changed my ubeat attitude to one of thinking that my C will come back.

However, I must say a big thank you to all those who have offered great advice and support during my chemo (which ends this Wednesday- YIPEE!!!)

Carly x

Guest user
Not applicable

Re: VERY CRITICAL

Hi Galen,

Just wanted to add that recently I have read threads (that are relevant to my circumstances) and reference to statistics and negativity have been branded about. I feel that if I want statistics I can search on google and scare the hell out of myself, but that would be my own choice.

We (the majority?) just want simple support and advice. We can go to our oncs for prognosis, which would be relevant to the individual not a statistical figure that is constantly changing (for the better!).

A.

Guest user
Not applicable

VERY CRITICAL

I am disappointed to say how i feel this site has changed in the last 8 months, when i was 1st diagnosed i found this site and the support amazing even though i only postted a couple of times , now i read threads and have replied to othes trying to offer my support but i find some individuals want to be critcial and cause debates !!but now i feel there is some scaremongering and unneccessary debates going on rather than good honest friendship and support !!!!!