This post is AMAZING!
A BC Dx made me redefine my identity, and I too have never fully identified myself using the term 'survivor'. This becomes an issue for me, especially EVERY October, where the term is so oft used during BC Awareness month and is saturated in pink.. . I am pleased to realise through this post that Im not alone with the 'BC identity mental gymnastics'!
I had BC signs evident enough for a medical diagnosis and treatment. I pray for the day when CA diseased cells can be detected early before causing such harm to so many... Since finding my lump in Novenber 2009, I live with the reality of a dreaded recurrence daily. This I find difficult, as there is no daily preventor meds yet for triple negative BC, & as its recurrence is highly aggressive in premenopausal women. However, somstarts this becomes somewhat more manageable.
This thread is helping me to solidify my identification of what it is to live with BC. To be honest, the only thing I can say i survived was getting over an initial misdiagnosis (Oh, your too young to have BC, nothing to worry about!!) to later be told I did have cancer! The rest has been rebuilding my life whilst LIVING with the realities of having been diagnosed.
I too have found myself telling people "I had breast cancer last year". I didnt plan on saying that, it just came out that way!! But like you, I would NEVER say I'm cured. Unfortunatley breast cancer isnt like that is it? The best we can hope for is that we are free of disease TODAY. And I just take each day as it comes. As long as I feel OK, I get on with the day. Ive had exactly the same treatment as you, and Im now on Tamoxifen for another 4 years. So as long as all that treatment keeps "the wolf from the door", that'll do for me!!
And you are spot on with your description of being a "survivor" and the car crash scenario.
This thing is never in the past. Only the treatment is. Breast cancer is a constant for all of us.
I recently found myself saying "I've had BC", and that past tense sneaking in rather surprised me, as it wasn't a deliberate thing. But I wouldn't ever call myself a "BC survivor", as we've all had lots and lots of other things to contend with that fit the "survivor" word much better. You "survive" a car crash, because the car crash is over and finished, it's time-limited, and its time is firmly in the past. Thing is, we never know whether BC is over and in the past, so how can we say we've survived it?
Similarly, I would never say "I'm cured", and people get a shocked expression on their face when I say that I won't know whether I'm cured until I die of something else, that the most I'll say is that I've had surgery, chemo, radiotherapy, targetted therapy (Herceptin), I'll be taking hormone therapy for the next 4 or 5 years and there is currently no evidence of disease, which is the best I can hope for. Kinda brings them down to earth, but I don't want people thinking this BC stuff is a walk in the park. A colleague of my daughter said "Breast cancer's no worse than falling off a bike." She soon put him straight!
I was Dx 8yrs ago, I will never consider myself a 'survivor'....my aunt was 15yrs after original DX when she had her secondary DX, she died 19yrs after her original DX .
I lie to say I'm 'NED' or 'In Remmission'...though must say i too like the term 'NEDDY'
What I never know to say is wether 'I am a cancer paitent' or 'I was a cancer paitent'??
Sometimes I do kind of forget ( well not forget..but not think about it all the time)....then it worries me all over again...especially when I know my appointment for my mammogram will be her either just before or just after christmas.
I went to see my GP about something else and he said to me 'O you are a Breast Cancer surviver' I was really surprised by this term as I didn't feel I had 'survived' anything but on reflection I think he may be right in that I am still here I am being treated for breast cancer but as long as I am alive I have survived it - its been nearly 3 years since my DX and the longer I 'survive' the better! Perhaps when if I get to 20 years Dx I will really believe I have outlived this horrid nasty disease.
Thanks, everyone. I understand people who think they're over it - I think that myself really, but I know bc can come back 20 years later.
But what I don't like about the word 'survivor' is that it was originally a 'politically correct' term for 'victim' or 'sufferer' - it's just a thoughtless term that emphasizes this idea of me bravely battling the disease, as the newspapers put it. As if 'battling' would produce better results than 'giving in'. I associate it with the pinkification - see the Guardian article Choccimuffin (sp?) linked to:
Lovin this thread
I tend to say i had cemo lasr yr, as i dont feel compy saying i had bc
However , i do think im survivor of the crap i went through,cemo rads operations etc.
But the shite continues, just different types lol, going back to work, are you better now!!!!, follow ups, niggles turn into panic.
The new normal xxxxx
This is a really interesting thread and comes at a very apt time for me. I had my final Herceptin last week and now have *just* the years of tamoxifen to get through. I certainly don't feel ready, and doubt I ever will, to call myself a survivor. Like so many others it feels far too much like tempting fate. Each to their own, I suppose. Like the rest of this journey, everyone just has to deal with it in the way that best suits them and their situation.
Loving the Neddettes 😄
I am with anyone who says they had breast cancer, positivity and thinking you are free of it even if your not is a great healer and also gives a sense of peace. Since ridding myself of this curse I have tossed and turned at night about worrying if I have cells that are mutating as I sleep. Eventually comes to a point where you have to stop this as worrying about something you have no control over makes you sick! Now I try to think that I had lived with BC for years without knowing but now I am living with it being cut out And making the most of everyday thankful that I have been given a chance to enjoy life!
What an interesting thread!
I love NED and most of all NEDDY
I have often wondered what the term ' bc survivor means' because even though i am three years down the line from DX, i am still undergoing recon surgery which quite often puts it at the forefront on my mind!
I don't like the word survivor, I always say last year I had breast cancer, and I hope and pray it doesn't come back and tell people that I drive my car everyday and to me there is more risk there. I would be lying if I said I don't think about it everyday but I refuse to let it consume my life anymore, I have known too many people who have had their lives cut short far too young from other things, I have no idea what is going to happen in the future but whatever is in store for me I intend to enjoy it fully and be thankful for what I have. I need to keep telling myself this to keep me sane!! We are all fighters xxx
All very very true, life is for living, in my job I see many lives cut short for various different reasons from terminal illness to tragic accidents, I very much appreciate each day more since my DX and really seem to enjoy the little things much more also, Ive always been quirky dont walk under ladders, black cats crossing paths etc etc but as said life is too short for regrets and worrying constantly over what MAY happen live life fully as possible and the main thing is be happy
I agree with you all and especaily applestreet's comment about life is for living.
Unfortunately I come from the 'dark' side as I have developed bone mets, however nearly 5 years on from dx and I don't feel ill, in fact I feel the same as I did before I had my primary dx 9 years ago. What I would say is, even when I had my secondary dx, I could honestly say that if I had popped my clogs at that point I would have had no regrets about the way I lived my life before, during and after diagnosis. Obviously my only regret then (and now) would be that I died young.
Although bc is on our minds I found once I'd got to the 1st year mammogram it didn't occupy me every day as it had before and gradually I got on with life, of course hoping it never came back. When it did I was so stunned, my prognosis had been excellent although I do suppose they got it right as I am still here after 5 years albeit with secondaries. Certainly a secondary dx focuses the mind even more on the here and now, not on the what ifs. My advice would be to get on and enjoy life as much as you can and have no regrets.
love your post Zeppa. ...the term Nedette is brilliant Revcat...I can live with that...totally understand the not getting steamed up approach MG...on the benchland thread I describe it as "couldn'tgiveamonkey's"...if this has taught me anything at all it is that life is for living..no one knows how long they will be alive..the term cancer victim gets right up my nose...I am not a victim of anything...I did not even feel ill even when I had my tumour..it was the chemo that made me feel bad and the tam gives me flushes...we should be described as female William Wallaces...BRAVEHEARTS...M
Maybe I am just tempting fate but I definitely do say "I HAD bc" and I have even used the "s" word of myself in trying to explain to a work colleague why I was no longer prepared to get steamed up about whatever the latest office gripe was.
I am 21 months post bc surgery and still on tamoxifen (for another 3+ years and maybe more). 1st annual mammo said NED. Currently having various lipofill reconstructions to try to improve the cosmetic side of things and with various tamoxifen SEs.
Of course it maybe totally wrong for me to see myself that way and it maybe that I am quite wrong and this b*tch of a disease is waiting round the corner for me. But am I better off for allowing thoughts like that to darken my "now"? It is an individual thing and something we all have to decide for ourselves what we feel comfortable about, but for me, I want bc gone from my life, my thoughts, as much as it reasonably can be.
I DID survive bc and yes, sometime it, or something else, will get me somewhere down the line, but then something is going to catch up with everyone at some stage.
Let's just hope that whatever we think of ourselves as being, and whatever label anyone else might use, that sometime is a long, long way off for all of us xx
We all had breast cancer for significant amounts of time without knowing it. Others are walking around at the moment without knowing, and some will die never knowing. Once you hit your 80s your chance of having BC is about 50 percent I think, it's just mostly it goes undiagnosed and people die from something else. Everyone's body is making cancer cells all the time, it's just that usually they get killed off. So to that extent, everyone has cancer.
It's also a problem of linguistics. The word 'cancer' (and even site specific terms like 'breast cancer') are rather anachronistic catch-alls given before people knew much about disease and the fact that cancer it is actually several different diseases with symptomatic similarities. So it's a bit like when people in the past were described as having 'the pox'.
This is quite interesting ... so , if you have finished all active treatment and on extended hormone therapy ie tamoxifen etc do you say ' I had breast cancer ' im so scared of jinxing myself, are you considered NED once surgery, chemo and rads over with ? Im just curious as waiting to see Onc next week 1st time since active treatment finished but then have another appointment on 4th Dec with team for signing off to open access if all ok
I don't like the term 'survivor', it makes me sound too much like a victim - I am not into that, I am a 'get on and deal with it' sort of person - I have my moments as we all do but try not to dwell on those.
But as the term is out there, and I am over five years on, I am definitely a breast cancer survivor for the moment. But I would never use that term - aside from the victim conotations, I do not know what will happen tomorrow, and saying I am a survivor implies that it is all in the past, over and done with. It perpetuates the belief that we are 'all clear' of the disease, that we can skip happily into the sunset with no fear of return. So if anyone ever asked me I would say that I had breast cancer in the past, and I am NED now. Not a survivor, not all clear.
This is why some of us dislke the terms survivor and victim, and why the medics don't use the word cure. Since I'm on my second time round, but am still likely to live long enough to die of something else, I think I will adopt NEDDY as my description. Thanks, Zeppa and Grumpy. We could always have Neddy-T, Neddy-A (Arimidex/Anastrozole), etc, and on bad days, Neddy-P,
I don't like the 'survivor' word because what does that make people whose cancer tskes their lives, whether quickly or slowly? I feel there ought to be a better 'language' but not sure what it owuld be. I describe myself as NED, I'm happy that way. Grumpy I love your extended version of NEDDY... that has refreshing honesty. In the part of Scotland where I live NED also means 'Non Educated Deliquent' and the female version is Nedette. In the BC context, I'm very happy to be a Nedette!
Zeppa, I love that comment! And I agree so much with everyone else in their comments. It is a different life after bc, never feeling quite free of worry and fear that the bc returns. I am still trying to come to terms with the 'new me' and often look in the mirror and wonder who she is. I think I am a survivor, but not of bc, my survival is about coming through the other side of bc treatment and trying to take each day at a time. Unless you have been there then you really cannot appreciate how simplistic the term ;bc survivor' is, and how it actually minimises the reality of living post diagnosis. I wish everyone all the best on this 'new me journey' and wish you all continued good health. jayne.
I totally agree , I have finished active treatment and am Tamoxifen for ?? years to be decided, I see my Onc also for the first time next week and have the jitters already, I feel at this moment I will always be living with one eye over my shoulder dreading the cancer may return, I still dont know what to say, I have cancer or Had cancer certainly not I am a survivor, yes I survived the surgery, chemo,Rads etc but its very early days for me ans like other ladies an terrified of tempting fate
I believe i am living with bc. Ned is my faithful friend for the moment. I have survived the treatment twice in 2003 and in 2010. But i know it could come back. I am making the most of the time with Ned and trying not to worry, but as I have checkups every 3 months it is not always easy.
Good luck to you
(NED=No evidence of disease)
Me as well....I don't like that term as it temts fate...I was dx last year and as far as I am concerned I will always be worried that it may pay me another visit...I don't even like people saying "you are in remission"...it gets on my nerves..let them be in remission and learn the true feelings this invokes in me..god...there I go..rant..rant..rant..
Good question! Not sure either when you can call yourself a survivor! I am coming up 2 years in Jan from dx finished all treatments last Sept? I am free of it as far as I knowbut am I yet considered to have "survived" breast cancer I really dont know I still get panic attack at every twinge although have got better at not wanting to make a dr's appointment every 5 mins lol!
Will read any answers with interest
Could anyone explain the term 'A breast cancer survivour'? Is it when treatment has finished and you hope you are? Is it after the first clear mammo after BC? Is it after 5 years when you have had no recurrence ? I have finished all active treatment 7 weeks ago and waiting to see my onc next week...I would never feel comfortable saying 'I survived breast cancer' I feel I would be tempting fate.. cause to be honest I think Im going to be scared for the rest of my life now for the fear of it coming back....Although its very early days still for me and maybe the fear may become less...But then all that said I'm still here arn't I?CONFUSED.COM...