hi naomifel im sorry that your having such a hard time with your ho and i know what you mean when you say you feel at odds with those around you. as to how your illness is seen and reacted to we all deal with those things in our own ways ..just to give you some idea as to how julie and myself sorted the dinamics of our rlation ship out .julie was my partner of 7 years a year into the relationship she got b/c she told me to walk away but knew that i loved her and i would be with her to the end. we talked and she told me that the illness not only turned her life upside down it made her doubt everything and not to trust anything. she raged at first then the woman in her came out she got a stenght and fighting spirit second to none that only a woman finds when things get tough .the man in your life i think needs to see your fight from your point i hope you dont go down the road that i have .but he needs to face the fact that he may have to. you need his support i hope you have his love and belive me that can be enough to carry you through.you must tell those that matter to you exactly how you feel and what you feel because then they can give you the support that only a family can. no one else matters except those in your world hope this is of some help this is from the heart because i have been through it and still am goodluck take care x
Apologies, I should really have read the thread before posting - I have nothing worthwhile to add to the thread at all and I have just interfered without making any contribution to the discussion whatsoever.
P.S. I have found this site to be both helpful and unhelpful at various times - but I have always returned to it for advice.
I should perhaps have read the whole of this thread before posting but instead I felt inclined to post after reading the last post by little943. I am having a terrible time with my OH right now - and I'm not sure its related to recent events, i.e. the diagnosis etc are immaterial - but just reading your post, litte943, made me cry for it made me realise that its not just those that are diagnosed that are suffering. Unfortunately, though, I have found that when I put myself first I am often also at odds with the people, and the man, I love which makes things much more difficult.
i dont want to bring anyone down but i have just joined this site my partner passed away feb 10h after 7 years of fighting b/c and liver /brain she put up an heroic fight and im so proud of her .my reason for this note is that we to were told dont go on the webb sites ect but we did and people like your selfs gave us so much hope and valued information two years in to her b/c we were told it had spread and there was no hope we did tomoxifen ect we found some info about a clinical trial for capecitiabine /lapatanib this gave julie 5 more years she also had lymphodema so girls you get as much info as you can use it as best you can you only have one life fight for it i wish you all the love and luck keep fighting i know my julie would have encouregd me to voice our support cancer affects us all one way or another and i hope you are all getting the support you deserve because 1 is a lonly number x
Initially I didn't venture near cancer websites. But after my mastectomy and during chemo, I did. I found it very comforting, informative, aggravating in that others knew more than me, and somewhere I could write what I felt to absolute strangers who would not judge me.
I did find some of Trisha's comments aggravating in that she had the money to go to the gym, to do some of the things she did. She also was given the opportunity to have the "cold cap" and keep her hair - this was not offered to me. At the end of the day she wasn't strapped for cash like some ladies are. They are living on benefits, with young children, and do not have Trish's advantages. I consider that I was lucky, I was in full time employment and did not lose any money in being off sick, in fact because I had paid into a welfare association I was better off. I was lucky but thousands aren't.
This comment was posted by someone on the Sky news website in relation to Trisha's story about running through treatment, it made me smile so I thought I would share it.
"If someone had told me to go running when I was having chemo I would have looked them in the eye, and told them to ---- off ...
It's good that she found a way of coping, but different people find different ways of dealing with different things. For example, when I was having treatment, instead of exercising, i found that watching Jermemy Kyle twice a day helped. If only to make me feel better about myself."
I don't like Trisha, never did even before her BC so its nothing to do with that. Good luck to her if she felt she could run to and from rads, but did she have 6 x taxotere, a large breast abscess that needed draining, a full mx then 5 weeks of radiotherapy (with a 3 hour round trip??) Oh, and I forgot to mention the ongoing Herceptin for another 7 months! How many rounds of chemo did she have, what chemo, did she have radiotherapy, did she have a breast removed.......etc.
Sorry for my winging, that lady just makes me mad! We all have stories to tell about our cancer but we do it in our own way - as Kylie did I think, you didn't see much of her during or just after her treatment did you?
She almost made me feel like having cancer is fun, jolly hockey sticks, shake the wand and its all better. How stupid is that. I expect when you've got a house full of maids, cleaners and people to do everything it probably makes it better, but is still not fun. I won't forget her comment about how people should "breathe through their pain".
Sorry rant over now.
Well at last some good news, Tricia's show has been axed by channel 5. Thanks Debs.LOL. Would have loved to see you wring her out and hang her out to dry.
Couldnt have put it any better!! I am 11 months since end of rads and also had long journey to and from rads, not as long as you though. Good luck and be good to yourself.
Send Trisha to North Wales, the hospital that I've been told I will have my rads at is roughly a 4hour round trip away from me(that's by car)!!!!! Like to see her run there and back in a day.......
Trisha owns the production company, her show has been axed from channel 5 I think maybe she will do a few shows re hers and others experience of breast cancer, then maybe a book. She is a business woman and will want to protect her workforce.
I was contacted by one of her researchers and they asked to speak to my husband and my daughters. After they had spoken we had a family meeting and made the decision not to take part. When the reseacher heard Ian was not the father they wanted to focus on how they would deal with being left with him and asked more intrusive questions. Not really what we had in mind we wanted to home in on the unfairness of thepost code lottery.
If the same researcher rang again I would jump at the invitation.
I agree with what Cat has said so well in her posting. When I was waiting for the mammogram and clinic appointment after I found my lump, I used this site and felt very reassured by it. I also used the email a nurse service a couple of times; once again I found the advice good and think it helped me to stay calm until the medics got to the bottom of my case. IMO, Trisha is not doing women any favours and I was very annoyed with all the "running to radiotherapy" stuff and "keeping fit on chemo" as I had 4 months where I could barely get out of bed on Taxotere; if I made it downstairs I needed assistance to get back up again. As someone who is supposed to know all about counselling and mental health you would think she would be more responsible.
We are all able to make choices and I have met ladies who wanted to know nothing about their illness, but equally I've met loads who wanted to research everything. Either way is fine, it's about what is right for you as an individual. I have to admit, I've looked at a few US sites which I found a bit scary, but that's just me - somebody else might get all the info they want there.
I also wonder whether there is an element of denial with Trisha?
I think everyone on here has a right to feel well grumpy sometimes, and also to say something if troubled by a post. And I may have been a bit tactless, I admit.
I haven't seen or read the latest Trisha stuff apart from here and I'm saddened that she feels it's her place to advise women who are feeling vulnerable and afraid not to use sites such as this. It truly should be left to the individual to make their own minds up about what will and won't help.
When I first found a lump in my breast I found this site and it helped me to get me down to see my GP rather than ignore it. Waiting for dx, the site provided information that I felt I could trust, and before surgery when I was terrified and angry, I received tremendous support from other users. I found it so useful as a resource.
Starting chemo, I began posting on a thread with other ladies about to start the same chemo drugs as me and months later, we're such close friends. Without them, I would have been going through this in complete isolation, and I'm deeply grateful to them and the bcc site.
I respect Trisha's right to her own opinion but as a minor celebrity she's in a position of some power because she can broadcast to the nation. I wish she would be more responsible in what she says. I remember the hoo ha that her interview with GMTV caused, I felt personally insulted from what she said and had to deal with well-meaning friends wanting to know why I felt so exhausted and spent time in bed because I was in pain when Trisha breezed through everything. Every single one of us is different and we each respond differently to treatments, to information and resources available including the bcc website. It must remain a person's free choice about what s/he wants to read or not read. Yes, there's some scary information around, but I'd rather know it and feel empowered to speak with oncologists and surgeons about what's happening, than be a frightened uninformed little mouse.
I wish Trisha would have one of her shows about breast cancer and get a bunch of us from this website on to it to talk about it from the woman in the street's perspective, not a minor celeb with oddles of money and consultants dancing attendence on her.
Don't worry about my comment earlier- I think I hit a particularly grumpy patch and I'm sorry that you had such a bad experience. I do appreciate where you're coming from.
Thanks for the info' - I'll see how I get on.
I think I understand what you mean, but in hospital (a mixed sex general cancer ward, not just bc) I was an unwilling, captive audience, too ill to move, speak or complain very much. I was the one who was offended and upset.
I can accept that some people there needed to talk. They got their wish. I needed rest and quiet, and I didn't get mine. If the volume had been lower, perhaps... There's a lot to be said for individual rooms!
We're all different; cancer doesn't just target the strong, silent types, it gets the chatterboxes, too, I know - and I hope no-one's been offended by what I've written; if they are, then I do apologise. I'd assumed that this thread was evolving (as they often do!) into a fairly abstract discussion of the behaviour that different people exhibit in the face of this disease.
The article is called 'Thinking Differently about thinking positive; a discursive approach to cancer patients talk' and appeared in Social Science and Medicine 50 (2000) 797-811
I have a hard copy which I downloaded some time ago but can't now find the url..all the links are to sites where you have to pay for it. You may have better luck.
Whoa! What on earth is going on in this thread?
Do you really mean to come on here as women with BC just to slate off other women with BC, just because of how they deal with it? If you don't like what you hear or read from other ladies then sometimes it may be wise to either ignore it and move on or ask them to refrain from having the discussion in front of you, whether it's in the hospital, on telly or on here. I'm all for free speech and am fine with criticism of people who put themselves in public view but you are running the risk of criticising and offending some users of this website, who may be feeling all sorts of insecurities anyway.
Maybe I'm being oversensitive but perhaps you should be having this sort of conversation by PMs?
Re read this and I am probably being oversensitive, but for some women who feel traumatised, the best thing they can do is talk about it, isn't it? you seem a very strong bunch of ladies on here with very strong views about how we should all behave. Fair enough I suppose...
Ditto the oneupmanship, Chalee. I once spent a horrific few days with an infection as an inpatient at my 'centre of excellence'. I was on a ward of four and there seemed to be a competition in progress for the biggest tumour. Ghastly.
Jane, I would love to track down that article by Sue Wilkinson and Celia Kitzinger that you mentioned. Do you know where I can find it?
I haven't discussed details of my cancer with many people so most people I know don't know how serious or otherwise it was/is. However I find that a significant number of people feel the need to tell me how much more dangerous and long their operation was, how their chemotherapy regime was more arduous, their side effects more serious... I have been truly surprised at this illness oneupmanship. I never respond to this kind of conversation, it surely reflects a kind of insecurity in a person when they need to display their superiority, even in illness.
I don't think women do exagerrate their symptoms in talking with each other...quite the reverse...I think many tend to underplay them...particularly when discussing side effects of treatment. I do think there are other kinds of competition in breastcancerworld, notably about competing to see who can be most positive and cheerful.
I'm also interested in linguistic analaysis of how women speak about breast cancer with ecah other. There's a brilliant article by Sue Wilkinson and Celia Kitzinger which analyses women's 'think positive' talk and shows it to be a oconversational idiom rather than a reflection of what women actually feel.
As for Trisha Goddard...well it just goes to show that just because another woman has breast cancer doesn't mean you'll agree with a word they say about it.
I'm interested in what you say on linguistic studies. When I started my treatment the nurses said they advised patients to try not to discuss their symptoms/side effects as every cancer is different. I was in a meditation group which I found really helpful, but a new member came into the group and the dynamic changed - we had a rule that BC was not for discussion within the meditation setting, but since we got a new member it has now become about people swapping their symptoms. I've decided to leave as it has become too much like a support group and this is not for me I'm afraid. Purely personal choice.
Hi Sharon1958, I'm curious as to whether the woman you quoted had breast cancer herself?
Perhaps it may seem that women are trying to outdo each other but in fact linguistic studies have highlighted certain patterns when groups of women converse which, if I remember rightly, goes something as follows:
Person A " I feel really bad because I burnt my hair and look like crap...."
Person B " Oh no, that' terrible. I do understand beacuse I singed my eyebrows lighting the hob and it smelt really funny and I looked like an idiot"
Person C "Me too"
Person A "well, I don't know what to do" and it goes back into that format
I can't actually remember off the top of my head who conducted that research, but the point I am making is that women bond and empathise by sharing their experiences. In the case of breast cancer which is a complex disease with a different make-up for each of us, it would therefore follow that in order to empathise it may involve revealing information about your specific diagnosis.
My own view about Trisha is that she seemed to be at pains to show that she was not in denial about her cancer. She made sweeping generalisations about women with breast cancer and her comment about her not being like women on chemo sitting in their council houses doing nothing realy irritated me.
I have a relative who is an oncology professor and when I was half way through the treatment I had a moan to him about celebs and others in the public eye - at the time Sally Clarke was being interviewed a lot and the whole Kylie thing was going on. His view was that people who are in the public eye with this disease all have their stories to sell and their books to promote. Whilst I have every respect for the fact Ms Clarke went to court for Herceptin, at the time my Oncologist told me not to pay too much attention to her book; funnily enough my relative said the same thing. As soon as I mentioned her my onc rolled her eyes up. Have to say I read a few interviews with her and listened to her on the radio and there were some things that didn't add up. In one interview she was talking about having a test which I found out is for prostate cancer and had nothing to do with BC.
As for Trisha, I don't pay attention to her interviews at all, I just get on with my life as best as I can as no 2 patients are the same.
We all deal with these issues differently I guess (eg some women like everyone to know that they have cancer and go bare- headed when they have no hair etc) but some of us, while wanting to know as much as possible about our situation, only want to share that info with our nearest and dearest.
Being older when I was diagnosed (65) I had already been to the funeral of 3 friends with breast cancer as well as knowing at least 10 other people who were 'survivors'. I also had a daughter with breast cancer but she had chosen to deal with her diagnosis and treatment by being very private about the full details of her prognosis and treatment ( which we as a family had to accept was her right). So it wasn't until I was diagnosed myself that I started to search the internet & realised fully what a complicated disease breast cancer is. If I had not done my own research I think I would have felt even more stunned by it all. Knowledge IS power - and shared experiences from others who have trodden the same path certainly helped me- though I do agree with the person that Sharon quoted - sometimes it does seem as if women are trying to outdo each other with their symptoms!
I have recently posted on After Treatment Has Finished re what I should be looking for between my yearly check ups -but have had no responses- maybe some one on here could advise me?
I think people perceive things differently. A lady I know from a general womans forum recently advised a newly diagnosed lady not to join breast cancer forums because they were full of women trying to outdo each other with their symptoms. I kept quiet because the lady is terminally ill but someone did point out to the newly diagnosed lady that she may find them to be a great source of help.
It doesn't amaze me that so few women know much about BC before they get it,it saddens me. Knowledge about any life threatening disease come from personal experience/caring for a family member or friend and the media portrayal of the disease.
I knew of no-one who had BC in my circle(perhaps I've lived a sheltered life) and so my knowledge was picked up from media reports. I now know how distorted my prior knowledge was.
I think when we read about celebrity accounts of how they coped with their illness we need to be aware that we don't know which bits have been edited out or which bits have been highlighted to sell the story.
I now view celebrity accounts of their illness with some degree of sceptism.
Oh for the day when newspaper headlines screamed out some of the wonderfully written real life stories from these forums. I can still dream on.
Have not seen the show in question, but would like to offer one thought - this particular forum has not only provided me with knowledge/information/wisdom, as I expected, but has also been a fantastic source of (much-needed) humour. Whilst some friends and family are inclined to treat me like i'm about to snap in two if the wind blows, on here I can still be ME and I'm finding that invaluable.
Each to his/her own, as with so many things in life...
Without BCC site my bc experience would have been an even more isolating one. I have had such wonderful support(some fantastic people on here who I now consider as friends) through the forums as well as enabling me to become informed with regard to various breast cancers and treatments etc. I am one who knew so very lttle before dx.
I am sorry Trisha has had to deal/is dealing with bc, but she seems to have forgotten the privileged postion she is in in her life being a celeb. with a loving husband at her side(a man who rescued her years back I think because of breakdown/mental health probs.) I think the wo/man on the street could feel less confident and less inclined to make a fuss about what is happening to them, a celeb. is more likely to be given the best of all treatments. I am sure that Trisha has her dark moments as we all do. I wish her well and continued goodhealth.
The intenet sites like this can inform and enpower. Yes it can/is frightening, but surely it is frightening not having any info.?
My onc is always very impressed with my Breast Cancer 'A' level knowledge and I always credit BCC for it.
I would have been so lost without these type of forums.
I was well into chemo before I discovered this sight via an ad in a magazine[called Pink!!!].Immediately I felt empowered by being able to find things out about my disease without recourse to the bcn etc.This was MY place to come.A while later I found even more on other sites and my onc said that as long as I stuck to discussion forums it would do nothing but good.As for Trish she has her bc and I have mine.Hers let her run to and from rads;mine put me in a wheelchair for a while after chemo and during rads.
Trisha Goddard is a bit of a dirty word (or two in ou house) although I admire any woman who can run to and from her appointments, rads etc I have found her flippant throw away VERY PUBLIC comments to be offensive and feel she should think about what she throws out there while broadcasting, being interviewed etc.
The interview in which she said we should try to run to and from radiotherapy appointments etc resulted in my supervisor telling me I should have considered it so my recovery time would have been off shorter!!!
Well rant over!!! I didnt come onto the BCC forums until I was DX and knew when I was to be operated on and a bit more about my tumour. I honestly couldnt have done it without the help of some amazing women in here. Yet another throw away comment from Trisha, she just doesnt seem to have an edit button. I feel she sometimes comes across as a person who doesnt think about the impact of her comments which for a woman who has been in the media for as long as she has is amazing.
Having said all that I still wish her well and hope she continues to be well.
What amazes me is how little so many people seem to know about cancer before they get it. Sure I didn't used to know about grades and stages and er this and her2 that but I had a pretty good idea about the fact that some people die and some people don't of all kinds of cancers....and I certainly knew that breast cancer was diverse knowing both women who had died pretty quick and women who had survived for years.
The day I was diagnosed after the consultant left the room the breast care nurse told me to stay off the internet as I would end up scaring myself witless. So many people advised me the same. I made my own mind up and finding this site not long after diagnosis became my lifeline. Each to their own though, i think we all know what we are capable of coping with. Still scared myself reading things, and still do .....
Trisha Goddard (is that it?), of chat show type thing fame, apparently advised all women 'who had just been diagnosed with breast cancer' not to go on sites like these, because they scared the hell out of her. She also said that she thought this was a contentious remark.
I had the opposite experience when I discovered this site, although I confess it was a while after diagnosis. Interested in the experiences of others.