Hi…When I was first diagnosed I sent really flippant emails out to work colleagues…I couldn’t bear to read them now. Everyone, understandably, thought I was coping so well and a couple jokingly said ‘you don’t do things by halves!’ because I’d had the bone mets diagnosis along with the bc. I blame myself, not them, but at the time I was so scared of being written off very quickly.
I’ve had lovely people, thoughtful, kind people reading up about bone cancer for me and how it can be very treatable and I’ve felt so awful having to let them know this is bc in my bones.
Sorting out family deaths for my Genetics appointment I had accounts of Aunts dying of lung cancer years after having had breast cancer…oh really?..and a Grandmother not having cervical cancer as was thought at the time but ovarian cancer…a huge difference with big implications but only I grasped it. Not that I expect everyone I meet to have at least an A level in cancer.
Oh Che the ‘you’ve beaten it once you can do it again’ line is everywhere and I’m always threatening to poke people in the eye too!
I used to go to a secondaries support group where we had an awkward pink champagne moment as one of the group had had a good response to chemo which, at the time, gave her a clear liver scan. She came in with champagne, thanked us for all our support, was sorry she was unable to come again as she no longer had secondaries…she also admitted she had found it hard dealing with our experiences. It lead to quite a discussion after she left…she felt sorry for us but in turn we were very concerned for her.
x
Hi every-one
thankfully an honest and frank tread!! I have my own views and concerns regarding the treatment of secondary BC which indeed I refer to as ‘second class cancer care’. Due to my background, I am well informed regarding the nature of cancer, it presentations, treatments and outcomes so please do not think that what I am about to say is due to lack of knowledge on my part. Can someone please explain to me that when an individual presents with stage IV BC from the start the treatment they receive is often less proactive that that for someone who presents with primary BC ? Is their life not as important. Treatments are based on ‘keeping things at bay, buying time’. Yes I know it is not curable but surely the treatment and management plans should be better than they are present. Why when all the evidence shows that certain medications only work for a certain time before they lose effectiveness do the medical staff wait until an individual presents with symptoms before they change them? This disease effects too many women for it not to treated in a more proactive manner. Is it not about time that 'Pink October ’ was dedicated to ‘Secondary BC’ and raising the awareness of the sting in the tail from primary BC.
Hello again
have been reading posts on here since it started and it is giving me strength by the day. I too was flippant when updating family and friends first time out and will never do that again - it just doesn’t help anyone. I feel like I am coming out of the closet and being honest for the first time. That was partly because I was the ‘strong one’ in my family (of 8 sibs)and my role was supporter not supportee, and partly to protect my lovely nieces and my daughter, who was 9 at the time. Its so complicated, balancing all that.
I felt apologetic the first time, because I had a grade 1 stage 1 scenario and not ‘real’ cancer like those with secondaries, so felt I should go away and not whine about it. Certainly not say that I felt it would come back. Over the years I have built some wonderful friendships and have been able to tell people what I really thought, but very few - some some friendships have gone, because like you, Belinda, I found some people just didn’t get back in touch - very hurtful but I decided to regard it as instructive - you learn who your friends are!.
This pink thing - it just grows and grows, its a way for society to put our girly disease in a pretty box and keep it there. I keep telling people to get to know their bodies, so that they are in charge, but so many tell me they just don’t want to know - and I think thats the bottom line, its too scary so lets trivialise it.
Ms Molly, I think it was you who said that there is an industry built up around bc and I agree entirely, even the voluntary sector buy into the girly thing. We just aren’t supposed to make it ‘ugly’ with our real anger and fears and that couldn’t be more isolating, and maybe thats why so many of us start threads with an apology.
OK, I have ranted enough for now, but I know I’ll be back because I am getting things off my chest by the bucket-load and I hope you can stand me continuing, or I’ll have to go back to my journals - I have 12 years worth, off and on, ranting to myself because I couldn’t tell other people.
take care and thanks to all of you, this is really helping me to deal with all the sh*t in my head
big love,
monica xxx
Hi ot2walk…the words ‘palliative care’ really made my heart sink at first.
I think I’ve been very fortunate in having pretty pro-active care…my hip was replaced straight away and I’ve had regular check ups since…with reassurance there will be no problem replacing the replacement if I outlive it. I have tumour markers taken every 3 weeks…I know for some these are not useful but my markers have always been a reliable indication as to what’s happening. When my markers have risen over a couple of readings my treatment’s been changed before the cancer can leap into doing some real damage.
I do feel fortunate to live in my part of the UK as I have lost friends in different parts of the country who were more or less left to monitor themselves. Yes there are so many women only being treated when new mets or a new problem presents itself. There does seem to be some huge regional variations…it’s so wrong. I wonder what the reaction would be if one year Pink October was dedicated to Secondary Breast Cancer…perhaps BCC might even consider it??? xx
Hi Monica…I had a year off work and everyone knew why. On returning some people just seemed to instinctively know the right thing to say…others put their heads down when I passed them in the corridor.
I hope you now keep out of that closet permanently. xx Yes we do all keep apologising.
Way back in 2002, my friends mum died of Breast Cancer. I had no experience of cancer, and remember thinking to myself ‘how would anyone die of breast cancer?’. I truely was ignorant of the fact that it could spread. Fast forward to 2004 and my mum got breast cancer. Stage 1, grade 3 - Great (according to Onc) - best type of cancer to have, very early stage (no mention of the high grade). Lumpectomy and then chemo and radio, but only as ‘belt and braces’. Mum breezed through the treatment, and even joked that chemo was a good diet because of the amount of weight she had lost. Had total and utter faith that she was going to be ‘cured’ and although would be high risk for 5 years, would ultimately be fine. Family members (myself included) very blase about everything, she would be fine, she had an easy and straightforward cancer.
Fast forward again to late 2005 - Secondary spead to lung, then brain, then adrenal gland. This is the time I joined this site and began to do my research. I knew at the outset that this did not sound good. The speed that it had spread and the amount of spread led me to believe that she would not survive that long. In actual fact she survived for a year, and died in August of 2006. I was 25.
This brings me onto the point of this posting (sorry for the rambling). Belinda, I completely agree with you. I was guilty of dumbing it down in the beginning. Once mum was terminal, there was nothing I didnt know about it. This was actually a bad thing for me, as the final year of her life was spent in a complete state. This is the time that I used to get comments such as ‘Dont worry, my mum had breast cancer and she is fine, she didnt even need chemo’ or ‘can she not just have more chemo to get rid of it’ or ‘perhaps she should try juicing carrots’ or ‘well she is young and strong, she can fight it’ (as if she had a choice, and those who fight the hardest are the ones who survive). She had a benign brain tumour successfully removed when I was 11, so when she had a secondary brain tumour people couldnt understand how that was worse, couldnt they just take it out and everything would be ok like it was last time? The best one, which still upsets me, was from someone in my family, who casually said to me after she had died ‘well perhaps if she had found the lump earlier she would be alive today’.
People almost couldnt comprehend that she was so ill. No one else in my family was prepared for her death because no one really believed it was that serious. She could keep trying different chemos until they stopped working, she could have operations if needed (which she did on the brain) and as she was young hopefully her body would be able to tolerate the treatments, she would be with us for years and years.
Her death was quite complicated, she died of pneumonia because she had blood clots in the lung from the cancer. Her cause of death on the certificate is pneumonia, with metastatic breast cancer as a secondary thing, so people say to me well she didnt die of breast cancer and would have survived if it wasnt for the pneumonia. I have to bite my tounge everytime just to not get in an argument about it.
If I ever get it myself, which is highly probable due to my family history, I am going to throw everything in my power at it, just as my mum did. I just have to come to terms with the fact that cancer was always going to take my mum no matter what she did. Her onc eventually said to us afterwards that it was a very high grade and fast moving cancer, and had probably spread to the lung at the very outset before the first set of chemo. She was not offered a full body scan at that point so we will never know. As I am young, people expect me to still have mum, and when I say she died of breast cancer, I can see that they are not as ‘impressed’ (for want of a better word) as they would have been if I had said she had died of a more well documented cancer. I think it belittles what happened to my mum and what she had to go through in her short time with the illness. It was hell on earth for her and us and I dont think many people understand that, because it is seen as a curable condition.
Sorry, that also turned into a bit of a rant!
Love Joanne x
I really agree with Cathy & Cathy. I feel strongly that cancer should be ‘taught’ in schools and colleges alongside other health education. Given that the stats suggest that one in three of us will be affected by cancer, I think people should be taught what cancer is, how it can progress and how it can be treated. Breast cancer should be explained in more detail to women, as it is one of the ‘biggies’ and not just one straightforward disease. It is no wonder that some of the attitudes we abhor prevail if no one understands what they are talking about. Why can we not be taught how cancerous cells behave, what happens if they spread, what kinds of treatments are available, along with some myth busting? I know I have not written these points in a very cohesive or logical fashion but I do feel strongly that in order to change attitudes, we have to educate.
Jenny
Joanne - that was a very powerful piece -thank you so much for posting. What you said “‘well she is young and strong, she can fight it’ (as if she had a choice, and those who fight the hardest are the ones who survive).” is particularly awful - I’ve heard that before and it makes me angry. Am so sorry for your loss too.
This whole thread has been really thought provoking - it has made me think even harder about my own bc and my attitudes towards it. Interestingly, today it occurred to me that my mum hasn’t told any of her friends,as far as I know, about what has been going on with me - I felt really upset that perhaps she thinks it’s no big deal after all, that I’ve had my surgery and rads and will take tamoxifen and that’s that…no more to worry about. It has bothered me all day - I was going to ask her why but bottled out,despite drinking a couple of glasses of wine.
I have lost a lot of people to cancers - breast cancer specifically. I was under no illusions when I was diagnosed.
When I was diagnosed I was shuffled off into this awful “special” room with a BCN - lots of flouncy cushions and soft lighting. I was then bombarded by the BCN with leaflets on mastectomy swimming costumes and leaflets on wigs and leaflets on reconstruction and leaflets on reiki sessions. I remember sitting there thinking “What the hell is happening here?”
All I wanted to know about was the cancer. Everything else was peripheral. I wanted to truly understand what was happening to my body and what was going to happen. I didn’t give a monkeys about free scarf tying workshops. And yet the cancer itself was never mentioned.
This all filters back to the idea of the whole pink thing being infantalising. It is as if they have decided that we can’t cope with anything other than stuff about how to paint on eyebrows if they fall out.
At diagnosis my surgeon (a very smart and respectful woman) handed me my path report saying “I know you’ll want this.” The BCN on the other hand said “Now then you are not going to sit at home poring over that and fretting are you?”
I wanted to box her ears.
I just don’t think men are spoken to in this way.
Don’t know how I’ve missed this thread till now. Thanks Belinda.
There is actually one point in Belinda’s first post that I disagree with. And that’s when you say you don’t see trivialisation on the secondary’s forum… That’s not true. There is, if in slightly different ways from the main forums. There’s an unspoken code on the secondarys forum about not talking too much about the bad things, and if you do of always balancing with good stuff. This is tiresome. Look at the gormless thread which has run and run…yes I contributed but probably only because I felt I needed to, to be a proper part of the club. I prefer my humour dark so the gormless thread’s a bit too light for me anyway.
But on the secondary forums the majority of threads are all geared towards treatement…what chemo are you doing? How long did xeloda hold your cancer? Carboplatin has failed. What other chemos are left? Rarely are there threads about the awful fact that at the end of the day the vast majority of us posting on secondarys are going to end up dead because at the end of the day treatments all fail. We kind of pretend they wont so when someome at Stage 4 dies the biggest reaction, from across the board is shock/surprise. Now in my way of thinking deaths from secondary breast cancer are sad but they are not shocking. They are not a surprise.
I think the trivialisation of breast cancer occurs because in the absence of effective treatmet or cure, the ‘powers that be’ (read for that ruling class or whatever fits your politics) deem that a diversion from the real facts of the disease is essential. Wow lets have a pink party rather than a group disucssion about the politics of reconstruction. Lets enter the Fashion Show and show off our cleavages; rather than organise a big rally about breast cancer.
Just a few early morning thoughts.
Jane
what i want to know is … how can they pinpoint nuclear weapons to the other side of the world very precisely yet they havent found a cure for this horrid disease yet !
Hi there I probably shouldnt be I here as I dont have secondaries …am therfore not going to comment on them as I dont know what I am talking about .I am in the BCC fashion show and I am certainly not in it to show off my cleavage ! a) I dont have one b)
I never did show it even when I had one and c) It really doesnt matter how it is done but anything that raises cash and breast cancer awareness is a good thing in my book and I can tell you now it will not be an easy thing for me to “prance” about in front of all those 2000 people but I am doing it to prove something to myself and my family .
At the end of the day we all deal with this differently and that is our choice .
The problem I have Mazaroo is that there is no alternative for those of us who find the whole pink thing grotesque. I would like to see the major charities counterbalancing the fluffy pink nonsense with some intelligent debate and lobbying.
I really don’t agree that “it doesn’t matter how it is done.” It matters very much how it is done. Fashion shows featuring cancer “survivors” parading around being “pretty” and “brave” feel like freak shows to me.
And yet again the focus is on the physicality of women not our brains or emotions. It is ALL about how we damn well look with this disease and it is rubbish. Because how we look won’t kill us. There is this myth that all women need is to look good then they will feel better - that stupid free make up nonsense sposnsored by the cosmetics companies is all about the same thing. It is twaddle. Having nice eyeshadow didn’t stop me from vomiting blood during chemotherapy. Why are people so afraid of the truth? Because that is what is happening with all of this guff - it is masking the truth of this disease.
I guess some of us see a bigger picture in relation to all of this and nothing is going to change my mind on that. Just look at how other cancers are handled by their respective charities and you will see how preposterous the whole culture of breast cancer has become.
Jane…yes…see I chickened out again, yes there is some trivialisation on the secondaries forums. I thank God you can no longer access the earlier BCC forums as I was the idiot who used to mention, regularly, women living with their bone mets for 20 years…(Penny Brohn was a long time survivor.) But since diagnosis the longest bone mets survivor I’ve actually met lived 10 years. Others lived for a few years, less than me. I get fed up reading bone mets don’t kill you but they do, they do and I’ve been guilty in the past of dumbing down bone mets. Your bone marrow ends up compromised so eventually you can’t tolerate further treatments. Your spine often collapses which leads to all sorts of other complications…and now I feel bad for mentioning this so old habits die hard. I think we, well I feel this, want to encourage anyone starting a new treatment when we all know we are only still here thanks to chemo. If we’ve had a good response to treatment we want to share and hope that person has a similar response.
But I too share your surprise Jane when others are shocked someone here dies. It doesn’t surprise me at all when someone dies from breast cancer…I’m saddened but not shocked or surprised.
Joanne, I’m so sorry you lost your Mum to this disease, sadly many years ago I (stupidly) used to think you just whipped a breast off if there was cancer and as a breast isn’t a vital organ it’s all fixed and sorted.
msmolly, reading of your BCN…I get so peeved when I read comments on here, no doubt well meant, to newly diagnosed advising them not to read too much on the web.
Hi Mazaroo, I used to feel I had a ‘problem’ regarding fashion shows, if money was being raised I should be ‘grateful’ almost and keep quiet. I love my make-up, would wear lipstick to walk to the postbox but I do think these shows and fun runs etc are sending out the message that breast cancer is a disease which can be airbrushed out with beautiful clothes, clever ways of scarf tying and artfully drawing in eyebrows. It’s lost on me that fun runs often include the obligatory funny or pretty bra worn to raise money for a disease which often requires drastic surgery. Or if you are like me, diagnosed stage 4 from the start it often means no surgery and walking round with a tumour hoping it won’t fungate, come through the skin…it happens. A dead friend, jennywren will remember well, was a runner up in a Prima competition, Survivor of the Year or something like that. She died a few months later, leaving 3 beautiful children, very young children. Prima wouldn’t want to know, wouldn’t want their readers to know the end of the story. My take on (some areas) of fund raising and not at all directed at you personally mazaroo…I first read you were going to ‘prance’ in front of 200 people but I see it’s actually 2000! That’s an awful lot of people!
like I said we all have a choice and deal with stuff differently it helps me personally ,it certainly doesnt detract from the seriousness of the illness I have lost family members to it so I would never deal with it flippantly but I really dont see myself as a freak either …so we will agree to differ on this one as this could certainly be the start of some protracted postings that I am not prepared to get into .
Having been unfortunate enough to have experienced ‘another type’ of cancer myself, and having lost someone very dear to me to yet ‘another type’ of cancer I can honestly say I did not come across this trivialisation that there is with breast cancer. Why this is so, I’m not sure. I can only think that it’s because breasts are what a lot of people see as the hub of feminity, ergo, pink and fluffy are feminine…bollocks! Cancer is cancer and as yet there is no cure, cells either become active again or they don’t. It’s not more awareness of breast cancer that needs to be raised, it’s the awareness that this disease is no less serious than any other type of cancer. The researchers are the ones holding the key, this is where the money needs to go so youngsters of today do not have to experience what we are now.
You are right Moonshine.
I am not accusing you of being a freak Mazaroo. And it is unfortunate you will not engage in discussion about it because that is what we really need.
I object to this idea that a handful of (marketing?) people seem to have decided what it is women with BC need. In excess of 45,000 women are diagnosed every year - I don’t for one minute believe all of these women are in any way interested in a fashion show. In fact I think only a tiny tiny percentage of those women would support the idea. But where is the consultation? And as I said before where is the alternative to it? Where is the focus on intelligent debate and lobbying rather than lipstick and spangly pink corset brooches? I feel completely disenfranchised from the culture of this disease. And I know I am not alone in that.
As for the Prima thing I was engaged in some correspondence with them for some time. The last I heard they were re-evaluating the way the competition was promoted and described. My argument was that it is idiotic to have a competiton in the first place. How dare anyone presume to cast judgement on who is or who isn’t the bravest breast cancer patient. Least of all the readers of some tabloidy magazine.
Just noticed that the thread in which someone suggested that positive thinkiing prevents nausea during chemo has been locked.
So it is clear that BCC support the idea of spreading misinformation.
That’s me gone. I will not participate in anything so crass.
Good luck to all.
msmolly I hope your last posting means you aren’t leaving all of the forums? I for one will miss your postings. We need people like you and JaneRA to help us cut through the crap…but that said I’ve been so frustrated here over the years I would understand completely. I believe BCC often supports misinformation…I guess in doing so it generates more money from the public. I use these forums, glad they’re here but have at numerous times wondered if parts of this large, leading breast cancer charity ever really listens to us? It’s mainly all slick, shiny stuff now…it’s a great shame.
My mantra has and will continue to be ‘Think Before You Pink’ that is the message I would like to get across. I also know the only way I will leave the forum is when Ian announces my death in the mean time I report the deterioration of the disease as and when ‘berry’ and all. I feel I have to tell the truth not frill and fancy it up but as I am a dry humour type of person for me it is important that my humour comes through but I would never mean to trivialize the cruel disease that is robbing me of my life far too soon. I am shocked when I hear of a member dying especially when I have felt they are for the moment doing o.k. When I heard of Cathy’s death I was shocked and I don’t think I was the only one.
Love Debsxxx
Dear All
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