Thanks for starting this thread Belinda - I have to confess that I very rarely read many of the primary threads to be honest - I don’t feel much of their content is very relevant to me and I tend to disregard stories on the site regarding the benefits of popcorn or walnuts or whatever, whatever …
I have also had to (kindly I hope) reject offers over the last few months of “Oh, so-and-so I know had breast cancer and she’s beaten it, wouldn’t you like to meet up and have a chat?” No, I wouldn’t I’m afraid, I’m in a totally different boat and I think I’d find it more upsetting than useful.
This is in no way meant in a disrespectful way to anyone with primaries, but I just see us as having very separate problems and issues and this is why I tend only to read the secondaries board on here on the whole.
Scottishlass, I’ve only been on bisphosphonates for eight months but four months ago I had to have a tooth extraction. It was done in the hospital and I had a ten day course of antibiotics following - I was told at the time that my risks of complications were small because I’d only been on Pamidronate such a short time. I’ve had no problems at all - but obviously it’s a whole different ball game when you’ve been on treatment for ten years. I hope everything works out ok for you in this regard.
I know what you mean about finding strength from somewhere too - I’ve managed to amass huge amounts of strength from God knows where over the last eight months - maybe it’s just a coping technique, who knows?
Anyway best wishes to everyone and hope you all have a good weekend
You don’t have to have 2ndaries to be irritated by it all.
It is just over a year since I got this thing and I am more irritated than ever by the “culture” which seems to surround this disease.
I am very angry when people suggest that others should forego conventional medicine in favour of idiotic hocus pocus. I am very angry that ANY money from the NHS coffers is spent on this rubbish. I am very angry when charities like Walk The Walk (who raked in £10million last year) elect to give their money to the Penny Brohn Centre and research into acupuncture.
I want a cure for me, for you, for all of us. I don’t want any more women to die of this thing. Every single penny should be heading into the pockets of researchers who can give us that cure. Everything else is meaningless. When my son reaches 18 (he is now 2) I want stories of breast cancer deaths to be as remote to him as tales of consumption deaths were to me.
It seems to me that breast cancer is quite an industry these days. Thousands of people are employed in the constantly expanding charities that feed off of BC. We are flogged pinkydinky badges and stupid cr*p merchandise and is it any wonder that people don’t take this disease seriously? Belinda is right - it is trivialised.
When I was first DX I hated hearing about the 12,000 who died each year - and cursed those who mentioned it as doom-mongers. Now I find myself ranting on about the 12,000 because I am sick to death of people thinking breast cancer is no big deal.
Hi scottishlass…I think I heard about osteonecrosis when I was searching on the side effects of bisphosphonates…I think it’s now becoming more known because some of us are living longer and taking bisphosphonates for longer periods. It seems once you develop the condition there’s not much that can be done. But then again I was diagnosed when my hip spontaneously fractured (had a successful hip replacement) and have since fallen down hard during the last snow falls with no fractures…so in many other ways thank goodness for bisphosphonates. Take Care…x
Hi Lesley… I would also be rejecting those chat offers! A few times since diagnosis I’ve thought about perhaps having some counselling but unless the counsellor was in the same boat I don’t see how it could help. The best help for me has been talking to and meeting others from here. Have a good weekend Lesley…x
Hi msmolly… I had absolutely no idea Walk the Walk gave their money to the Penny Brohn centre and research into acupuncture.(why?!)…what an absolute waste. A friend who died a few years ago used to pay large sums for expensive faith healing and a regular telephone ‘consultation’ with a well known alternative therapist. She also had all the conventional treatment open to her but understandably was desperate to see her young children grow up so was open to all sorts of ‘diets’ and ‘cures.’ When she died her husband gave me all the supplements and remedies she’d paid so much money for. It was so sad. I gave them all to another friend (also now dead) who used them.
I also think anger can be good. We used to be more angry here, productive anger…many of my dead friends were forum members. It was, I feel, more acceptable then. It seems to be more frowned upon now…x
Belinda - thanks for starting this. I am so peed off at the pinkness and light heartedness surrounding bc and the fact that it is presented in the media and also by medics as barely cancer at all. Everyone is fed the myth that it is not serious cancer and to tell te truth on diagnosis I had no idea just how many people still die with it, my consultant gave the impression that it was almost a rarity these days - I came away with the notion that I was silly to even think it was ife threatening. You are right - it is totally trivialised and I can not think why. I have a primary dignosis and accept that at this stage things do look fairly positive but know from being on here that this is an unpredictable disease. I read a thread on the tyranny of cheerfulness and it resonated with me. Why can’t we be upset and angry without being considered mal adjusted? My BCN seems to think that I am odd because I am still pset at having mx surgery a year on - she actually said i should be over it by now. I am angry too. And I am sick of people who peddle silly ideas like don’t eat carrots, or whatever nonsense is on offer in the papers each morning - and women who have “beaten” it - sometimes that makes me maddest of all because they clearly have secodary diagnosis and mags like Amoena with people who just love having secondary diagnosis because it makes them better people. I am a much worse person - angry (yes really) and bitter and peed off at the so called treatments which are so horrible. And surgery that leaves you changed forever and treatments that mess your body even more. How dare anyone say we are lucky it was bc.
Yes Belinda thak you for starting this thread. I think there s a very strange relationship between the major breast cancer charities and the people with cancer who join in various activities.
The jolly approach to having cancer has always appalled me. I dislike the way that cancer is trivialised and the way that women who respond to a cancer diagnosis by being smiley and superficial are somehgow held up as examples of the socially acceptable way to respond to cancer. Thus women with cancer are represented as brave, funny, valiant and there is no space for more difficult responses: anger, fear, tears etc.
Lets hope this thread remains lively during October as we continue to question these destructive representations.
Hi Jane…please don’t apologise for having a rant…actually I thought your post was honest, refreshingly so…not a rant at all.
I’m resigned to dying from a pink and sparkly cancer…I once read on a corporate site that donating to breast cancer was popular as it was a ‘sexy’ disease. I’m not making that up…I wish I was and I wish I could remember exactly where I read it! A few years ago my local newspaper published a story about a woman who had ‘beaten’ breast cancer because she’d maintained a positive outlook throughout her treatment. The article annoyed me so much at the time I emailed the reporter who then wanted to do an article on me. I declined as all the cancer articles in our local newspaper require you to look wistfully into the camera. And the woman who had ‘beaten’ her cancer died a few months later…the paper then did an article on her being buried in her wedding dress. Take Care Jane…x
Hi JaneRA…with (is it 15,000?) (according to BCC) satisfied Vita readers will things ever change in our lifetime? I know I’ve mentioned this to you so many times but how I miss the old forums.
Take Care Jane…x
Hi all
I read this thread with some interest. I was horrified with my primary diagnosis last year of IBC and was so thankful that my bone, liver and lung scans were all clear. I had no idea that BC could spread, having never known anyone with cancer before, let alone BC. Before I was dx with BC, I really was never aware that it was such a “killer” disease and am thankful for forums like this one for making me aware of all the facts, and what might happen. After my biopsy the surgeon actually said to me “well you are lucky, its ONLY BC and the prognosis these days are good”, what did he know? I came home and researched and was horrified to learn how serious BC is. I, like many others, got used to seeing names (I won’t mention them because I am sure you all know who I mean), who were all young women with children and how bloody quickly this awful disease ended their lives. It’s scary, but it’s a fact of life that the media NEED to know about.
I secretly pray every day (despite being an atheist) that my dx will remain with just a primary, and never for one second forget what I may have to face in the future. I took/will take every step I can in my treatment, however horrid and debilitating, to give myself the best chance possible. It’s plain and simple; I don’t want to die from this. I have now finished a year of Herceptin and hope upon hope that I will never have to go through anything like this again. It doesn’t take away the fact that many of the secondary ladies here have to suffer pain, debilitation and detraction from everyday life because of this awful disease, and for that you have my empathy and admiration – I just don’t know how you do it, but you do. In this day and age with medicine the way it is I don’t understand why anyone should have to suffer pain, but some of you do and that is my biggest fear.
I wish I could wave a magic wand and produce a cure for this horrible disease, and fear for my daughters and your daughters too for what they may have to face in the future. Sorry, I feel I have ranted too and hope it isn’t out of place.
I think part of the problem is that, as a group, breast cancer patients are so diverse - and there are so many of us. There are a great many women around who really rather embrace the whole pink thing - almost enjoy it.
I find it odd that there is all this merchandising for cancer, don’t you? That you can get anything from a mug to a t-shirt to a make up bag declaring that you are part of this enormous pink sorority. Who buys this stuff? Patients themselves? Well meaning relatives?
I saw a hideous brooch being sold by one of the charities. It was a spangly diamante pink corset. Words cannot express how vile this thing is. And surely it is the antithesis of what any of us are going through.
If you participate in the Walk The Walk challenge you have to wear a decorated bra - even if you are male. That says it all in my opnion - it has crept into the realms of panto dame with comedy fake boobies.
Hi again chipper…it’s just such a crazy word to use isn’t it?
Vita magazine has had a few threads devoted to it…some people will find it a useful read I guess…and contented readers would probably not post but so far the majority of postings here have not found it a helpful read.
I’ve spent too long on here today…now going to tackle the ironing…and on a Friday evening too…goodness life in the fast lane.
Have a good weekend…x
Hi peacock…I don’t think we have ‘spoken’ before but I’m always drawn to your thoughtful posts. It’s frightening to hear your surgeon saying you were lucky (some luck?) and it’s ‘only’ bc (only cancer?)
I’m just so grateful others like JaneRA and debsincornwall (and not forgotten dippykate) are more honest than I am about their day to day living with mets…they tell it how it is…how it will be for me one day.
Hi msmolly…a few years ago there was quite a debate here about pink merchandise. A lot of the forum members at that time were pleased with the merchandise Asda offered in their ‘Tickled Pink’ range. Many of us weren’t happy at all…I think we were less in number, remembering the thread. It became a bit heated at times but it was good, I thought, to debate and exchange opinions. I have a big problem with such merchandise and calling the range ‘Tickled Pink.’ I’m not the least tickled pink with breast cancer. It used to upset me, literally reduce me to tears to see ‘Survivor’ T shirts. I felt such a failure.
I was so disappointed BCC had a ‘In the Pink’ campaign last year. It just seems such an inappropriate choice of words.
Thanks to all for the replies I’ve had today.
Thanks for all the feedback. x.x.x
Keep on ranting. Maybe we should all petition and lobby parliament to highlight the number of deaths each year from bc. Swine Flu Bird Flu is all my ar… Load of b…cks. I have always been a supporter of breast cancer charities, but the more I learn about this disease and all the hype surrounding pink sh…t, the more sickened I become. It is totally unacceptable that 12000 women should die each year from this f…ing disease.
Signing off now and will have a large glass of wine.
Hi again
it is so good to hear grown up emotions expressed on here…I got terribly depressed last time because I couldn’t bear platitudes and being congratulated because people couldn’t tell I’d been ill - they just couldn’t cope and somehow I was responsible for that, and being a good girl (then) took care that no one realised I was screaming with fury and fear. I had people telling me how fortunate I was to have survived when I knew in my guts it would be back. when my close friend was diagnosed 5 years ago I made sure she knew that anger and grief are a realistic response. Like me, cancer has returned to her life and I am lucky now to be able to have an honest dialogue.
I read an article in 1998 that described bc as a ‘chic’ disease, I kid you not!
I’ve told everyone I care about that I’ll poke them in the eye if they tell me I’m strong, but given the media coverage, its hardly surprising that they think that way if they haven’t had to deal with it. My eldest sister tells me that I am helping them to deal with it by saying it how it is this time.
The platitude this time around is that, apparently, I’ve beaten it once so I can do it again…so thats OK then, no need for any of us to think about it anymore!
The other thing that bothers me is how many of us apologise, even on these threads, for asking questions or being upset, like its barely acceptable to.
this rant thread is an absolute lifeline, thank you Belinda, for starting it - it is doing me a power of good and I hope everyone else too. Lets start a revolution! rant over!!
best wishes to all of you
Che (aka Monica)
the ‘chic’ disease thing did strike me too when I was diagnosed …I knew nothing really about bc before, though my sister in law had it I only knew the basics or what I needed to know regarding her. I know feel like a bc encylopedia and am amazed at how little other people know. It probably doesn’t help that I think we generally underplay the situation to spare the feelings of others, at least to make it easier for them. I look back on my emails to friends telling them what was going on and you’d think I just had a bit of a cold ! I apologise all the time and feel bad for being needy as I feel I should be better now and I suspect that my friends (no all) and family think it’s all behind me now. Some haven’t really seemed bothered at all (only one or two) & that stunned me.
Can I just hop in for a minute to add support re the ‘girlie disease’ label which BC often has attached to it?
Since I’ve been on this site, I’ve also become a bit of an ‘expert’. Before I knew b*gger all about this (as you said Chipper) and that scares me too as it means most other women haven’t a clue either. I can’t count the amount of people who’ve said to me, ‘Oh well, at least it’s all gone now, you’ll never have to worry about it again’ or ‘Oh they’ve given you tamoxifen, that’ll stop anything in its tracks’. This is what people think - once you’ve had mast/chemo/rads etc then that’s it, game over Cancer - oh yeah, bring on the pink champagne!!! Clearly, from reoccurences/secondaries etc it CAN ‘come back’ at you and even more agressively so WHY THE HELL AREN’T WE MORE INFORMED - agggh! Also, why do most women I’ve spoken to (apart from those here), seem to think there’s only one type of cancer - because no-one’s bothering to educate us and stop the ignorance surrounding BC, ah no, can’t be negative, let’s cover it in pink! And who the hell was it that decided to give such a cruel disease that affects us and everyone around us that sickly blancmange pink image anyway? They must be so proud! How dare they trivialise and ‘girly up’ a disease which tears lives apart!
Everytime I seen ladies training for BC walks/runs etc with those vile tee shirts with printed pink bras on the front (oh tee-flipping-hee!), I want to vomit. Yet another reason for some men and those who don’t think BC is serious to have a good laugh at our expense. And frankly, the more ‘pink’ this gets, the less people are giving a t*ss! I totally support the fund raising but isn’t it time we stopped ‘poking fun’ and trying to be ‘oh look, we’re all so jolly and positive now we have BC’ and spoke more honestly. I know I do.
My respect to everyone here and lots of love. I was dealt with in ‘early stages’ but I’ll never ever become complacent thanks to all I’ve learned from the ladies here and think it could never reoccur etc. A few months ago, I believed my ‘early stages’ were so trivial, I considered having no treatment…
That was a long ‘minute’s’ rant but wanted to add to support.
People are so poorly informed not just about breast cancer but about all illness or conditions. Swine flu is a brilliant example of mass hysteria fuelled by scaremongering journalists. People ringing up some kid on a help line to get a drug that may have worse side effects than the flu itself, that is if you actually have flu and not just a cold or fancy a skive off work! Breast cancer is another disease that the media have got hold of and messed up all the facts, just publishing the ones that make Joe Public feel easier about cancer. Because it is so common, people assume that there is only one type of breast cancer, understandbly so. Therefore, because Aunty Peggy lived until she was 92 after having a breast chopped off in the 30’s, it mustn’t be much of a serious disease. Ok, there are one or two public figures who have died of the disease along the way, but hey, they were just unlucky and didnt they die of another type of cancer, like lung cancer, not breast cancer? (something one of my colleagues said of Wendy Richard after she developed secondaries) And if people can run around in pink bras having a jolly good time whilst doing their bit for charity, surely that isn’t a bad thing is it?
I have no idea who thought up the Pink thing, but I can guess that they might be horrified that their well meaning intentions of raising public awareness whilst raising money has morphed into this horrible circus which does nothing but trivialise a deadly disease. But nothing will change the public’s image simply because they don’t want to believe that cancer kills.