just had to post Wow S got a lot off your chest there, Yes you eloquently expessed what i was truely trying to say, I am happy that you have a relatively good experience.
Cherub, not knocking NHS I am a psychiatric nurse working for NHS and think it is our greatest achievment. it is individuals and lack of consistancy thank I am complaining about. It does appear that it is compedent information and on going support that is lacking. I would speak to BCN or onc re counselling as ther is specialised cancer counsellors out there, dont have to go throw GP.
Sandra, thank you, It is great to know that others are getting the service they deserve, It does help me personally that breast cancer is not a third class problem everywhere.
love to all
I have felt really sad reading this thread as the NHS care I received was excellent. Up until the year before I was diagnosed I was on BUPA and I would put my NHS care on a par with anything I had been treated for privately. My husband has attended every appointment with me whether it be for check ups, chemo or rads and he has also been treated with sympathy and the utmost respect.
In my case I felt the system fell down at the end of treatment with the attitude of my GP, who told me I didn't need counselling and that I should just go off and get on with it; my GP was also ignorant about the drugs I was on, even though there was a blaze of publicity relating to Herceptin at the time of my diagnosis. Sadly, my local Maggie's get patients complaining about the attitude of GPs all the time. Perhaps GPs would benefit from extra training in dealing with the feelings of patients with cancer.
Sharon so glad you have got a date for your op sorted out. Gosh, I really feel for all of you that have gone through such insensitive treatment and experiences.Maybe I'm on the wrong thread posting here,however, I would like to say I have nothing but praise at every step for the treatment I have received...maybe you should all move to North Wales ! I have been singing the praises of the NHS to all my friends but it is obviously greatly differing around the country. I had a fantastic surgeon that explained everything ,he even came round the ward on his day off to see his ladies were ok. I think he does thing very differently as most I know who have WLE and SNB as I did are either in and out in same day or the next day. My surgeon kept us in for 4 days as didn't like to send us home with our drains still in. The hospital was so clean and all staff were just wonderful,so friendly and comforting ,the food was excellent too,I don't work for the nhs,honest ! I was so impressed with it all I had to send a thank you hamper as I think it made a huge differnce to my well being and how I coped with it all. Saw my oncologist this week and she was lovely too so just the rads department to go next.
It certainly isn't a male/female thing it is just how these "professionals" deal with people ,I guess I have just been "lucky" in that the teams that I have had dealings with have excellent people skills,just wanted to put the other side of the coin.All I can suggest is for you to put pen to paper and make sure your voices are heard,it is the only way that these services will improve .
Sharon - can I just clarify - are you saying you got the impression they thought that breasts are not essential and loss of a breast is not life-threatening and so you should not be sad about losing it?
It is precisely this - precisely this - that I am so angry about and have tried to get BCC to take notice of the truth about, which they have declined to do, for example they failed to deal with issue of loss of breast(s) properly in their 2 podcasts on body image.
Obviously breasts are not essential for physical survival, but physical survival is not the point of life - we weren't preserved in order to be a pile of pulsating organic matter - 'life' is ambiguous: it means biological life, and it means life-story, and it is a value judgment to say that breasts are non-essential, because sure you don't die without them, but your life-story, life possibilities, life options, your quality of life, the way you feel about life is changed, because they precisely are essential for the integrity of our self-identity as a woman and for a fully satisfying sex life for many women (I'm not talking about pleasing men, or partners, here, I'm talking about men pleasing women, though of course its 2-way).
So it is not for them to tell us they are not essential. It is for them to take from those of us to whom it matters in this way, which is not everyone, that they damn well are essential. That's what I meant when I said they were making value judgements on our behalf - they have decided that breasts are non-essential, and we are going in like lambs and being slaughtered - not killed, but our 'life' is being ended, as we knew it. Not everybody wants that.
I am not saying we shouldn't be having treatment - because, as I said, the alternative is death by cancer, though I fully understand anyone who takes that option because I do think the choice is a bleak one, so they should give us time to take it in and make our choice rather than hastening our passage through the machinery; what I am saying is they shouldn't be making these judgments on our behalf, and they should be listening, and hearing, that we are devastated by the results of treatment, which is so so so so obvious to me, I cannot understand why they keep failing to address it and cannot see it, they should be aware of our needs because god knows there are enough of us screaming our heads off saying the same things.
Like you Sharon, my surgeon sometimes didn't look at me when we were talking and he was offhand and it was very difficult for me to squeeze out information which I got the impression it was somewhat tedious for him to have to explain. And other things. And one BCN was unspeakable. The other has been fantastic.
I really don't think it has got anything to do with male or female; it is just whether the person has any real experience of - and interest in - genuinely human issues, or not. Some just have no idea, and probably will not have until something in their lives goes horribly wrong, which for some of them may never happen, but for others it will. There may also be something cultural in it, hence more humane treatment in Spain - perhaps; I think there is something of puritanism and the protestant work ethic still hanging over us, such that we are not to complain, and certainly not to think sex is important, and certainly not if we can still work and walk. But that in my view is a gross disservice to humanity, and I think they know deep in their hearts, and their own bedrooms, that sex and sexuality are rather fundamental to human life and their disruption is fundamentally damaging to a person. But we are still embarrassed to admit it.
Well, I have ranted again, sorry - and especially sorry Sharon if I got the wrong end of the stick of what your were saying!! please forgive if I have. So glad your oncologist is a human being. Very sorry you have your op ahead of you, nothing can really help, nobody wants this to happen, those of us in this boat came to the point where we had to choose the devil or the deep sea, I'm still not sure which is which, still trying to sort it out in my head, still trying to think well at least I've got a head to sort it out in, still can't say I'm glad to be alive but I don't exactly want to die either which I guess is how I got here, to this strange alien desert landscape where I am still trying to find my way around.
So what I wanted to say before I went off on one was, part of it is about loss, about grief, it is an amputation, and I would be surprised if some of our feelings were not similar to those of amputees - say for meningitis, or diabetes, war or accidents or whatever reason - and surely then there are people who know about these feelings and could just help us along a bit; I mean I know the only way out is through, but a helping hand would be nice...and anti-depressants, while they have their place, are kind of 'blaming' us for 'not coping' when in reality coping is what we are doing, coping with trauma, which is not quite the same as coping with a little bit of spilt milk, and takes longer, and hurts more... and that should be obvious. They don't hand out anti-depressants at funerals, why so readily to us?
sorry, too much stuff
just thought I'd stop by to let you know that I will be adding lop sided chest to my list of moans soon ,surgeon has decided to reinstate my op for monday. I am pleased, to be getting it over with and one step closer not to have to keep seeing Surgeons face.
I was really not suggesting that Women were better than men as proffessionals, but rather that I get the inpression that it was my responsability as a woman that tumour had got so large and I should of insisted on screening before hand and also that, because the breast is non essential and its removal non life threatening I should shut up and put up. Open and honest advice and frank discussion of the options, from the out set is essential and much more truthfulness in treatments affects would have been useful. All this delevered in a sensitive way together with support if all is not hunky dory after. I cant beleive other cancers are treated with so little of the above. An example is I have never seen my surgeon, during all his pronouncements, sat face to face, all have been delivered whilst I am perch on a examination couch.
I will shut up now, because i am rambling, Jane keep on ranting if it helps at all, happy to hear you.
Oh by the way my onc ( a male) is a darling, no other word for it, I would offer my body to him, not that h would want it.
Oh well going to be busy packing my bags and packing the little one off to nans, shopping and all in prep for going in on Sunday
wish me all the best ( hope his scaple skills are better then his people skills)
Best to all
Welcome Countrygirl and Snow White (and anyone I have missed). i totally agree and identify with everything you have all said.
Snow-you arespot on about misleading, i hate the drip feeding. when i challenged it i was told it was because they do not always know extent of disease etc till later. That was at best a half truth given the investigations undertaken and I feel it was nmore to do with patient compliance - if I had known the truth i would never have submitted to this treatment fuelled by false hope of a cure. I would rather have stayed intact and taken my chances for an albeit shorter but better quality life.
Susanna - i too am a health care prof and always worked hard on my professional development, listening to patients and trying to meet their needs. I am horrified by the people I have personally encountered, esp my "care team" and cringe to think of how much the BCN is paid to be completely useless- not just to me, to most of the women i have met.
All in all i feel like I am on a production line - the info given was BCC leaflets which I did not find very helpful at all (sorry bcc, especially regarding the emotional aspects of this horrendous, mutilating treatment, it's very coy - cancer research are more informative but even then not really enough info.
Sharon - feeling so much for you today and thanks for thinking of me - can't figure out the inbox thing and worried I might bring you down unless there are other posts to offer other views too?
KarenR- thanks for your honest and positive post about the way you are trying to establish control in your life.
i think women are just as uncaring and useless as men - it's personal attitudes that count. i am no more than a hospital number to the lot of them.
I did'nt used to be like this.
anyway, love to all
Its seems i can't keep away from this thread.
I have to say that the care that i received from diagnosis has been tremendous. Male oncologist, Male surgeon, female BCN and a Female plastic surgeon. Initially plastic surgeon said that i would most probably have to wear a prosthesis for the rest of my life. After recon surgery was postponed i was sent to another hospital and so had another plastic surgeon this time (male) He will be with me to the end now and I owe alot to him. he has done such a fantastic job (using the fat transfer method) that once nipples have been created you will hardly be able to tell. So i can honestly say i have come to terms with the way my body looks now.
With a view to my own experience i would say that having women professionals is not necesserily better than the men. I have found that men are more sympatheic and wonder if i was seen by a man in the first instance whether i would have been diagnosed sooner.
The problem i have found is the aftermath, all you are told is that having breast cancer is a life changing experience. rather than what to expect with the menopause symptoms, the pain during sex, the effect it has on relationships, stress of work, financial worry. Every little thing mounts up to the point of explosion where I had to admit i had a problem.
nearly six months ago i admitted this and asked to be referred to a phyciatrist, i was prescribed anti-depressents but as yet still haven't seen anyone. We are left to pick up the pieces on our own even though we are constantly told that there is help out there. What i got fed up of was constantly being told by the everyday people around that you should be back to normal now, and then being told by oncologist that he thinks i'm doing very well and that getting back to normal takes time. What am i supposed to be like?
I have my down downs but i always try to put a positive to every negative and so far its worked to an extent.
Jane Don't give up. Take time for you and forget about what others think and want you to do. Be selfish and don't feel guilty about it. We are all strong on here, stronger than we think.
Its good to moan isn't it? It's good to smile too
Love you ALL
It makes me very sad to hear of your negative comments & loss of faith in the NHS.I am a nurse who trained & worked for 20 years in the NHS, myself & my colleagues always strived to deliver the best possible care. Now I´m glad I left the NHS. BC is devastating enough without being treated badly by uncaring stupid professionals. There must be some health authorities that deliver excellent care??
I am surprised Sharon that you havent met a female professional, that is a shame.
I have had all my tmt in Spain, 2 surgeons performed my mastectomy, both women and they were fantastic, I did feel at the time that they took more care than a male surgeon might have. Perhaps that´s unfair to say as I have worked with brilliant male surgeons but thats the way I felt after the op. My husband also noticed & commented that he thought they had taken more care, they also spent alot of time talking to both of us before the op.
My oncologist is also female and every time I see her she is great & really helpfull too. Going back to the "lucky" issue, I do feel lucky that I have been under the care of these amazing women, especially when I see all your NHS horror stories. I have always felt I´ve missed out as we dont have such things as BCN´s here but maybe not as my medical care has been superb every step of the way. There do seem to be more women doctors & surgeons here, I´ve also noticed there are alot more male nurses than in the UK so there´s much more of a balance. Maybe you should all move to Spain!!!
You can & should complain, I´m sure the health authorities now issue leaflets on how to do so.
Countrygirl - I´ve spent 18 months thinking I was a freak cos I could´nt "buck up & be grateful". Like snowhite I also dont feel thrilled and spiritually enriched by the opportunities bc brings!!!.As I said earlier thank god after reading all these posts I now feel normal!
Hello everyone, I am so glad to have found this thread. I thought I was the only one who couldn't "buck up and be grateful". I have frightened myself with the strength of my anger seven months after my diagnosis. I used to have faith in the NHS but have been sorely tried during this experience. I eventually changed hospitals for treatment after mx and clearance because of the way I was treated. If I had stayed at the original one I couldn't have coped, as it is I try to vent some anger against a particularly stupid and uncaring BCN by punching cushions!
All you ladies are writing such helpful and eloquent stuff here that I am finally feeling that I'm not mad, thank you very much. xxx
Hi S Welcome
I read not so long ago that breast cancer patients get the least info. we can speculate on why that is. I know they are out there but Have yet to meet a female proffesional!
Any way I want to tell my surgeon Where to stick his scapel tomorrow but I going to have to rely on him, so therefore reluctant. I would feel in a better position with more info, thats why i am calmer now because of the info I got from here and stealing! fact sheets. none which was given to me. where do we complain?
JANE- thanks for vote of confidence, Would like to give them hell tomorrow but proberly wont.
I am concerned about you, I understand how much you have lost, but Have not really got to grips with why you have given up and got so low, would be happy to talk privetly, others Have sent stuff to me via my inbox but I dont know how to do it, happy to exchange number ect. if i know how. Bast wishes
Hi - just found this thread and share every feeling expressed. Have read many such threads since I found this forum. So many of us have these feelings (how many, I wonder; certainly too many, and enough for the professionals to take notice of - and how many would be enough?) that I am angry: especially as my cancer was found on screening (I'm supposed to feel grateful - perhaps I might if they knew how to talk to us, how to inform, and how to support) so it was at their invitation I came to this party, yet all they've done is made me cry and then told me, in these words, "You're cured, go and get on with your life" at the end of treatment, then when I finally plucked up courage to admit I wasn't feeling overjoyed with what I'd found in my party bag, a hard thing to do because we're all supposed to be so thrilled and spiritually enriched by the opportunities bc brings, and grown up enough to look after ourselves, they sent me to a Macmillan clinical psychologist with no experience of anyone with breast cancer who made me feel like a Martian.
It took time, and discovering this forum, for me to realize that she was the Martian, but never mind that, what I wanted to say was that I am in process of writing letters to various people on this subject - on my particular issue of the inadequacy of information and preparation before screening to ensure you go into it fully informed and aware of the possibility of a diagnosis, but also on the poor way they give information through treatment (I was positively misled, so as 'not to cause unnecessary anxiety'), and on the lack of understanding of and sensitivity to and appropriate support for the common, normal, intelligible, and by now predictable feelings during treatment and in the aftermath, and above all on the way they pre-empt our decision-making by making assumptions and value judgments on our behalf which leads to selective information, and the way they treat us like specimens or numbers and not individuals, because they have forgotten what being a doctor is all about - people - if they ever knew, and are preoccupied with, god knows, statistics and chemo regimes and infection control, and, and, and...
Karen, I read your blog and that Dr X fell short of professional standards and should be re-educated, I would say more, but feathers come out - so surely they should stop talking to us and treating us the way they do because they are actually making our experience worse than it needs to be and god knows it's bad enough.
Since many of us even ask ourselves if it was worth it, and that is a genuine question in view of the horrible nature of the treatment, and the life after, they should not take for granted universal agreement that it is. I dare say, since the alternative is death, and death by cancer, many of us would not change our decisions (though there are people who seem entirely rational to me who decline treatment) but clearly it is something that we need to talk through, and not a trivial matter, and something that many of us feel, but we are left to struggle alone, and are told to buck up as though a fizzy drink would do the trick. There is nothing so damning as denying the other person's response, and when it is caused by what you have done...
So I suppose what I wanted to ask was - I know I am completely naive, and doomed, to imagine I could take on the health service with a letter from mrs disgusted of tunbridge wells - but it would encourage me to know if I am not alone thinking I should tell them because they need to know that they are failing us in a very fundamental way in not being sympathetic to the all too human issues that bc gives rise to. Or is there a better way of getting heard?
Oh God will I ever find peace and stop ranting? Sorry, wish I could be a no-crap person like you Karen! So glad you're all here.
Now I am going to be depressing again - sorry.
Karen - thanks for your comments - ggod luck with the MRI, will be thinking iof you. i have always been strong and assertive, now i really do not care about getting out there. i loved my old life and i just hate this body and this life, i feel guilty to say it but really do not think the treatment is worth it for me. you don't sound selfish to me and I think it is good that you are using this time to rethink important stuff. Hope you find you. x
Lisaf- I can't even be bothered to try to enjoy it any more. Enjoyment is too much effort. good luck for 2nd mx - I admire your courage. If it comes back I don't want to go through all that again as i am so sick of mew.
Wise words Ostrich - at least we all have each other.
Sharon - we told you you were not mad and I want to slap your silly BCN for over reacting when you were justifiably and reasonably upset.And you are officially sane - how many of us can say that! Sending best wishes for appt with surgeon and hope you cope on the day. x
Sandra - interesting thoughts on being strong versus telling it like it is. Also, interesting and encouraging that some of you would make changes for the better with your nearest and dearest.
i only cried once - after looking at pics of mx's. maybe if i could cry it would help. Thanks to all for thier posts.
Love to all
Hi Jane, hope your feeling better about yourself now knowing that you are not along in the way you are feeling.
its seems the more that post on here brings more and more home truths.
SharonC hope you get your surgery soon and it all goes well for you. I read in a very funny book once about how bc becomes the main topic of conversation in your life and wondering what you actually talked about prior. It is so true, what did we talk about? We will never be as we were before and like you said there are probably a lot of things that we don't want to return back too.
One good thing that BC has shown me is that i am strong and i am a fighter. Before; people would walk all over me an take advantage. I don't let them do this now and i think this is a reason why there is so much enphasis from others for us to be as we were before. They don't like the new improved, taking no crap from anyone attitude.
lisaf you must tell work how you are feeling, that is a mistake that i made and after nearly a full year back at work i was eventually sign off for a month with stress. Couldn't stop crying, couldn't eat, sleep etc... It takes time to adjust afterwards and you must tell them, make them understand how you are truly feeling.
PS not worried about the MRI cos i'm not letting the 'C' come back. This is my body, its taken my boobs and overies and i'm not letting it take anything more.
Big hug to you ALL
hi ive been on here over a year and just come across this - how true!!!
I dont feel lucky they found it but I am thankful that I am still here, this time last year I didnt think I would last this long and yet a day doesnt go by when I dont think about the feact that ive already had a year what if I dont have lots more, but I try not to dominate my life with BC, well I say that but Im paranoid most days like all of us Im sure and cry at some point most days over the least little things but I want my old life back, im trying hard and I am trying to enjoy life and pack as much in as I can before 2nd masectomy later this year.
I still drink and go out with friends but I think work thinks cos Im back full time (worked most of treatment) that Im back to normal and everything is fine, but I think its only on here that people realise that it dominates the rest of your life.
However, Im going to hopefully have a few months minus treatment and to try hand have normal days, hee hee. sorry for the long post x
A thought, not meaning to take away from how sh*t BC is but..
My hubby is having a real tough time at work at the mo and consequently is pre-occupied, grumpy, distracted, dis-interested etc etc. He doesn't mean it. He's actually pretty reasonable but obviously under pressure.
I tried talking to him today cos he's been difficult to live with. I tried persuading him that life is short (I was dx last August and know how short life could be) and to value what he has here - 3 kids, wife etc etc.
It was falling on unfertile land. He is soooo absorbed, preoccupied, turned in on himself that I was probably wasting his time.
It occured to me, although I think about BC several times every day and always will, he is no more pre-occupied than I was with my BC.
Whilst I am sure (and yet to convince him) that cancer is a bit more important than a job I suddenly realised how hard it is for me being married to someone totally absorbed with something else that I cannot for the life of me understand.
I guess I had an inkling of why I have felt he hasn't understood me throughout cancer and hasn't shared/cared/supported/helped (there are many ways I could say he has failed!) and sadly gained some realisation of how alone we can be in this disease!
It is so true that someone without a similar experience can't understand and today I realised that its a huge expectation to expect them to.
BC still stinks but I am trying (today) not to be fed up with everyone else in my life for not truly knowing what I am going through.
Its me again
Jane, I ache all the time and feel so old now, but I have been thinking about what you said about wanting your old life back! Before I did everything for the family, fetched and carried for them all and exspected to drop everything to accomadate friends. I am now no sure I want to go back to that. I want somthing different, dont know what yet, but different,. I am determind that there will be some changes,
Mazaroo I think being strong is not always a good thing I think Sandra has the right idea about telling others like it is or they will never know. when I broke down and my op was cancelled everyone said how sorry they were , not that i was upset but because there was a delay of my treatment. I think I am going to have to speak some home truths in the future.
KarenR Although I am awaiting surgery I can already see the (enough already faces around me) I have change so much already and I am never going to be the person I was before so I hope they get used to it and I will cry when I like. best wishes for the MRI.
Just to let you all know I was not carted off to the funny farm psych was annoyed my op was cancelled. got back home to find a message to say surgeon wants to see me Thursday, therefore hope that op will be soon, this is proberly why I am so positive at moment, doubt it will last
best wishes to all
Karen I love you!!! you are right f**k em all! I have my husband & my beautiful daughter, a handfull of great great friends & the rest can get lost with their stupid opinions & comments.
Your right about the only support we really have is from one another. Someone knowing what you are going through and have gone through and i think that is one of the reasons why friends, family, collegues pull away and expect you to be back to normal is because they cannot imagine what it is like for you or they are bored of the subject. Another thing is that it seems that while on treatment you get a lot of attention and its as though ' right your treatment is done so i want some attention now'.
I was at the hospital yesterday as i've had neck pain thats got worse since end of Jan got there to find that i have to wait for an appointment fo an MRI scan. I'm whittling about it but i havn't told a sole as i can't be bothered too and think that most are a waste of space.
I don't think that we will ever be as we were before the bc. I went through a stage like you are right now about hating my body and wanting my old life back, hating the doctor who told me i was paranoid a year before i was eventually diagnosed. But you know what' one day i just sat there and thought f*** them all. I'm going to do what i want to do, when i want and how i want. Maybe selfish but i think we deserve that. I am at the minute trying to find me again becasue i know i am still there somewhere. Feeling better each day and still got a lot of fight in me yet.
Karen - that is exactly it! Even our nearest and dearest get fed up. And you are right about the aftermath - it is during the post op/chemo/etc scenario when everyone thinks you are "fixed" that i sem to have become most resentful.
So mask on and really apart from each other there is no support. I really question what it is all for now as the treatment and even this perishing Tamox is so horrible. I hate my body and i just want my old life back and it can never be.
God - i am depressing!
love to all
Hi, i have just spent more than my lunch break reading through this thread and i have to say that all of you have made me feel a little bit more at piece with myself. I was diagnosed in May2007 after being told to go away a year ealier because 'there words' i was paranoid. cancer measured 7.5cm in diameter so had 8 rounds of chemo to shrink it followed by mastectomy, radio, a year of herceptin and 5 yrs of Armidex
I returned to work last March and have found and even said it out loud that to me it seems that the chemo surgery etc.. was easier than the aftermath. When i was first diagnosed i commented in my journal (my website can be found on my profile) about how everyone asks how you are and i always answered 'I'm fine' purley so i didn't have to go into great detail and secondly because i thought that is what they wanted to hear and probably couldn't cope with the truth. I was right! after treatment everyone expects you to be as you were before and so when asked how i was i started being more truthfull. No one ever asks how i am now, but get moaned at for not being my old self and have been repeatedly told to get a grip and that i SHOULD be exactly as before the bc. Which i think is S***.
hi all that is the beauty of this site ...we all know to a degree what we are /have to go through from dx to adjuvant treatment I am 17 mths on ...and 3 ops down the line and I still never get through a day without thinking of BC dont think i ever will have the constant reminder of a mastectomy .I have tried to be strong for my family and friends as I dont want to be a misery ..but recently when it all got on top of me and I really really cried the people around me ...crumbled as it is not what they are used to ..now I weep alone and put my mask on and face the world ..!!!!!
Sharon,I really feel for you,big hugs, I have found coming on here a godsend,both for info and support, we are all in this together on here ,the people on here understand what I'm going through far more than my friends do,keep chatting and rant as much as you like, better out than in ! Take care xxxx
Oh sandra you have no idea, I have had one friend send a letter saying she cant do illness and then changed her telephone number so no contact. most others I have seen three or four times in last six months Sure get to find out who your friends are, however have made others who show some understanding. with family and freinds I keep a normal out look chat and joke and hosting roudy parties for Chrismas and new year I still get the pitying or who's just died looks when I walk into the room. This last couple of weeks is the first time i have let this get on top of me so i dont understand their response.
The irriversable decision of the mastectomy after all this time I have found difficult after six months of treatment. I sure wish it had been done back then when I felt like fighting.
I too know nothing about cancer not happened in the family before. then father in law and me within two weeks felt surreal. the so called "professionals" have been usless, the surgeon makes pronouncements then walks out leaving it the bcn, my onc is a "sweety" all he does is hug and kiss you! pretty weird but true. I have learnt a lot from this sight I have only been posting for around a month and have learnt more here.
I know that not everyone will wont to know all but I do it is how i process things, eg I have asked 6 times to see aimage of my cancer but I still have not seen any. what is that about.
thanks all I have now raved enough
would you beleive that the psych i am seeing tomorrow is someone I have workesd with for over 20 years and i have too go to my place of work to see him that cant be right.
enough from me
caring thoughts to you all.
WHAAAAAAAAAAAAAAAT ! "Get better or die" ? Jeez, if I were you i would get rid of those so called friends and never speak to those family members again, don't put up with that, some people are unbelievably ignorant,they just don't/can't think.
Before all this I never knew anything about cancer and it has been a steep learning curve, but I am educating my friends in exactly what it involves because unless I tell them they won't know either.
I have never suffered fools gladly and will have no problem in correcting anyone who thinks I should just "get over" this and if they really annoy me they will just be told to bu***r off ! Maybe Im just not so tolerant of other peoples mad views,some of you are just too nice by far.
I don't feel "lucky" but my glass is half full and I just think for me things could be a lot worse, life never has been fair, that's just the way it is.
S. happy to hear you are positive about the majority of your scars, you would think with so many diagnoses the "proffessionals" would of got their act together by now!
Susanna glad you are feeling more "normal" now. is the hair grown back mine looks like pubic hair. I have seen some good recons but it is a big op.
Jane so sorry your recon did not go as you hoped, maybe time to ask for a second opinion.
My husband wants me back to normal as soon as poss, dont think he really understands, his dad was diagnosed with cancer two weeks before me and he died in October, so he is supporting his mum and just wants me to survive this, I honestly think other family and friends think enough is enough either get better or die now it has been going on for so long.
I have not been able to face work since my diagnoses which is another reason i have to pull myself together , finances and wot not.
Well see psych tomorrow, I do think I am mad, I am angry at myself for breaking down and now resentful of the delay now want to get it over with.
phoned bcn but she is not today spoke to someone else and she said that they would have to wait for psych report and then i would have to go through the whole process again, see that twat of a surgeon and proberly sign another consent form before surgery can go ahead. I could kick myself
Best Wishes to all I have gone on long enough
I had immediate recon via LD flap, reportedly a good reliable recon option. I beg to differ - mine is squarish and I have to keep thinking of it not as a boob but as a superior mx scar in order to keep the sadness and anger at my new look under control. Thankfully i did not have to have rads.
I know what you mean about the undressing though I don't have kids - I lock the door now whereas I never worried before. How do you manage with partners, if you have them?
I am back at work and coping okay though more tired and not as clear thinking as before. Hating work though and lots of changes mean it feels "new" which is yet more uncharted territory to contend with.
You are all actally making me feel more positive because now I feel more "normal" to have found people who feel the same way as I do. I dont feel miserable all the time just old & tired. (Never have felt brave!!) I spent 400 euros on a wig and wore it once, I HATED it, so I always wore a scarf. I do actually feel good just at the moment, It is my daughters 13th birthday today and considering I didn't imagine I´d be around to see her 12th that's progress!
Jane... how long after your radiotherapy did you get your reconstruction done?. I cant even contemplate that yet. Tamoxifen & hysterectomy, hadnt even give that a thought up to now, I have a gynae appointment thurs so thats more to think about. I dont have any pelvic pain or problems but I do know that tamoxifen can cause problems in the uterus.
Sharon.. I also used to undress, bath etc. without a thought in front of my daughter, now she stands outside the bathroom door & shouts if she wants to talk to me when I´m in the bath. It feels wierd now!
I would also be interested to know how any of you are coping with work??
love to all
Sharon - i feel angry and upset for you too - it is a nightmare, I'm not at the stage where it feels better and I can't offer any encouragement because this whole experience feels totally s***, but i do empathise. You are not mad - you are perfectly normal - the idea that you would be okay with all this is what is mad and additional pressure no one needs. Bahrons is right - it is all about the cheery display of stiff upper lip, now rebranded "positivity". Good girls don't moan and are very, very grateful so when they come across someone who does (because at my hospital all the girls are "brave" you are clearly the problem, not the situation.
Sus46 - hair comments - really p me off. i must have looked so bad before bc as people keep telling me i look fantastic now(which is not true).I say "so do you" in a cheery voice, turning into a bitch methinks.And comments on the wig - like why would anyone take credit for a wig?? I just wish they would not comment like they did vefore bc - the fact they comment makes me feel like I look so bad they need to buck me up. ASlso why do some mates think it is somehow fun to try out wigs - you don't need cancer to try out wigs so why is it (even on a bc website) somehow labelled "fun " to try out new looks??
Bahrons - always sensible with good advice. I just hate my scars; my back is a mess and the reconstruction so horrible I avoid touching or looking at it. Also hate the way they put you on display, everyone sees the scars because the body belongs to the NHS but i try to detach myself from the experience while feeling like the freak in the room. Dare not voice that though - ungrateful!
I am scared about the Tamox hysterectomy - my onc sems to think that gynae problems are almost unheard of. What happened,if it is not too intusive to ask? I dread gynae problems and already have constant pelvic pain since chemo ended.
Take care all
You don't sound at all mad to me.
Perhaps you aren't displaying the correct degree of 'stiff upper lip', 'positivity' or what ever the current buzzwords are this week.
There aren't much bigger shocks in life than being diagnosed with this and then having to submit to several very brutal treatments in very short order.
Why do they blame US when we don't take it very well?
TOTALLY agree with the conveyor belt idea! I read recently that 43,000 women are diagnosed every year with bc in the UK. No wonder it all feels so depersonalised.
I just wanted to say (because you asked and I didn't reply earlier, sorry forgot) why I am ambivalent about my scars.
Well, my original mastectomy scar was jolly neat, healed up a dream. Ditto 3 years later when I had a TRAM flap recon where the original scar was opened up and used. It went incredibly well (my surgeon used to ask me if his students could come in and see it), looked fantastic and I got a flat tummy and a nipped-in waist into the bargain (lots of positives). The scar was very red, but I had it lasered some years later and it's whitened and faded almost to nothing (another boost).
I've also got a hysterectomy scar (courtesy of Tamoxifen). I associate it with the end of years of pain!
I've got a wee one where the Portacath is (no more hassle!)
I've got a grotty one the other side where I had a second primary a few years ago and had a lumpectomy. Can't think of any good to say about this one, I have to admit. It's been troublesome, rubs, itches and pulls.
I don't like my scars and of course I'd much rather I didn't have them, but they don't impinge on my lifestyle in quite the way the results of other aspects of treatment have. And they are all reasonably sympathetically located; I can still wear a swimming costume, etc.
X to all
It's good to occasionally have a rant and rave because we mustn't complain must we? When I was first DX in DEC 07 I could not believe what I had been told, it was like I was in a nightmare or having an outer body experience, which people refer to as the "emotional roller coaster," oh yes been there wanted to get off but couldn't, words like scared, frightened, shock, then the conveyor belt, operation, chemo and Rads. I think I lost a year of my life in 08.
Then suddenly it all stops and you live with this dark cloud which hangs over you day in day out (A bit like "Drozzle" out of the "Beeps") those of you who watch children's tv will know what I am talking about!!!
I went back to work and yes people forget what you have been through, I hit a blip in Jan, FATIGUE and could not stop crying, I am now "depressed" but I would contest that!!! So I sit and talk to a counsellor who says " I don't know how you cope with a DX of cancer one day you are healthy the next you are not!" "How do you feel?"
And yes you do grieve for what you have lost your health, hair, fitness. As so many of you have said here.
Jane I am single too, and live with my Mum, don't be to hard on her, she is probably grieving for you. Mine used to say "Why are you crying now? What's upset you?!" This was usually after I had had a traumatic experience with a needle in the chemo suite!!!
Yes let's keep this thread going.
After I was first DX I wrote my thoughts called "Picking Me Up", search for it if you like.
I am 47 too. with three boys youngest 10. The poor boy had a old mum anyway now she's ancient. I used to undress in front of boys and whip them out any time if they go ahead with mastectomy that will all stop ( he frearked about bauld head) oh by the way apparently I have a lovely shapped head for baldness, and my curly bum fluff looks stunning. My greatest fear is that daily shock every morning when it is all done. Dont get me wrong i am positive too, positve I will not die of cancer and positive my family will not suffer too much which is why i rave here thank God for Julie. I am also positivly fed up i can not do the things i did six months ago.
We have limited choice but to live with what's been dished out but i wish medics had told me about the long term affects of the treatment I would of like the choice.
At last I´ve seen lots of comments I can totally identify with. I had mastectomy & axillary clearance 18 months ago and every morning when I wake up I get a shock when I see or feel my chest! I try very hard to stay positive but as you all know that´s impossible sometimes, especially with all the menopausal symptoms deal with as well as everything else. I´m 47years old with a 12 yr old daughter, how is it lucky to have been so ill & out of action for over a year? The thing that makes me see red is when people say " oh but you really suit short hair". Oh good, it was worth going through chemo then just to find that out!! Even my own mother used to call me baldy. I know people mean well but I wish they´d think before speaking. Sorry I´m ranting as well now. I guess we all just have to learn to live with our new situation and understand that life can be good but just different from now on.
Hi Jane and Susanne A
I so understand about the feelings when signing consent form it felt like I was handing over my body and saying yes maim it as you will, Went through the fear and panic of dying months ago now just feel frustrated, sad and to be honest looking for a way out.
Yes and health care is now more about degees,targets/paperwork and not being sued. What happen to good old empathy.
I am now angry that he has cancelled my surgery without even speaking too me (prehaps I dont know what I want).What happens if they say I am unstable? does that mean no more treatment?
We are all more than a bunch of abnormal cells, I thought medical proffession was about sustaining life and improving quaility of life did not know one was exclusive of the other. If I had had some questions answered and a little time for explanation about the dicisions made It might have helped. But All I was left with was this is the most effective treatment, makes you feel like you are a production line.
Good luck to all sorry to be raving again.
It seems to me that anger, grief and fear are all normal reactions and we are somehow not allowed to express this without criticism and admonishment.
Sharon - the surgeon wants you "mentally fixed" before he operates when I wonder if they really get it is not an abnormal reaction to an abnormal and surreal experience? Knowing it is going to happen is horrible; I was resigned and defeated emotionally as I was escorted to the theatre for the op and as they hooked me up for anaesthaesia I stared at the ceiling trying not to cry. For days before I felt sick and scared and angry at me for letting it happen. I felt angry at signing the consent form for the op and actually it still rankles; i did it to myself because I was scared to die but I hate that I had to agree. Now I feel like i can't live properly anyway.
Ostrich - I now think of the recon as a superior mx scar - it is not booblike and feels horrible (even to the touch - skin is somehow weird) and the internal sensation is unpleasant/painful at times. It's really just a superior scar. Women who have recon later seem to be more asatisfied and I think that is partly because they are comparing with the mx scar and absence of a breast, we are comparing against a real breast as you acknowledge in the comment re cosmetic outcome.
Snottrags- you are right the body ownership thing really gets to me; even the fact that they seem to need a pack of nurses in the room; all staring every time they speak to or examine you. I feel like an exhibit and all nurses feel free to joke, all girls together, not matey at all when you are the only topless person in the room.
Suzanne - i think this cancer pathway is just a self important production line on which we are products to have bodies saved.My experience is there are too many of us for anyone to be bothered with what happens after the cancer bits are cut off, chemoed or fried.
Also, a friend has advanced secondaries - it seems that even that does not rekindle interest from medics and there is so little support for women at that end stage it makes you wonder why they bother to save the lives in the first place.
Sorry all - rant over.
This really is something that medics need to understand better. They're used to seeing the body as a collection of bits that need to be put right, which is all well and good as far as it goes, but the emotional aspects could be dealt with better. I think they - and many other people - are actually afraid of our grief and anger, so they try to make us push it away. But if you aren't allowed to acknowledge it, it can become very corrosive. And to treat you as having a psychiatric problem is the outside of enough! You'd be mad NOT to feel grief and anger over this!
I train social workers (I was going to train lions, but social workers seemed like more of a challenge.) I had a student who was a young man working in a home for older people. He found it very difficult to sit and talk when they were distressed - he was afraid he would cry. I asked him if the sky would fall in if he did. Coincidentally, while he was on placement his dog had to be put to sleep - he admitted that he'd bawled his eyes out. And the sky didn't fall in. After that, he felt much more able to cope.
I wouldn't recommend going around killing off the relatives or pets of medical staff to teach them not to be afraid of empathising, but some of them would certainly benefit from a little more training on the subject!
I also hate the "lucky" attitude that my BCN pushed at me on finding out I had cancer. I felt like she was patting me on the head like a little child. recently when they had attempted 6 times to get a line in and I was having to consider a central line. My BCN popped in to the chemo suite stating that they could use my cancer arm but that I was having a central line put in without even speaking to me.
I was so angry as had spent the last hour explaining to use the cancer side but apparently not my decision and then to not even ask if I wanted a central line. I felt like it was not even my body. I know there are others worse off, saw it with my recent admission to christies, but no matter what your DX we are not lucky. I didn't complete a slip to win a bout of BC!!! sorry rant over!!
I have been reading this thread with interest and agree whole heartedly with the feelings expressed.
I particulary agree re the "you should be grateful for what we've done to save your life" attitude and, to quote my BCN when I raged at when I would ever feel normal/heal/have a recon that actually looked like a breast, "Be patient...thats why your called patients"
Ha bleeding ha!
The fact that my recon boob looks like....well I'm not sure what it looks like except not much like a boob... seems another thing I am "bothering" them with.
I tried explaining to my Surgeon that had I chosen a boob job and the outcome had been what I have I would have been furious. It may not work as a sexual object anymore in terms of sensation but why the hell can't I expect it to look good without the feeling that eyes are rolling and people are thinking "just be grateful to be here"!!!!
Hi Jane and all
Just need to spout again. just got off the phone to bcn who has now told me that they have cancalled my surgery because surgeon refusing to operate until I have seen a psychiatrist. I agree about the greiving thing, I know I'm greiving for my health and trying to say goodbye to my breast I AM NOT MAD.
Sorry to rave again but I now dont know where i am going.
Oh by the way would you beleive that I am a psychiatric nurse fully understand about health care workers Where is the caring?
And Bahrons2 - as ever, wise words. It is a big experience in life and we live with the scars, physical and emotional.
Also Maz - good luck with Recon 2.
Sharon - thinking of you
You know folks - given I was told that I seemed to be taking it badly i now realise that actually, I was'nt unusual but probably vocalised how i was feeling where others perhaps were less able to, for a variety of reasons.
Maz, Catkin, Suzanne, Dochas, Bahrons - i really welcome your thoughts and see my own experiences reflected in them. I had not identified the feelings as grief and bereavement (I have no experience of bereavement - yet)but it sounds a sensible explanation and in that somehow justifible to feel as upset as I do. Why do BCNs not identify that? Mine makes me feel ungrateful and I think that is for me a very difficult experience - feeling grateful when I hate the body I am in.
Dotchas and Catkin - I feel for you re the work environment - same boat!!! And the recon saga is a nightmare - feels like Catch 22 and I too have been reminded that this is "only cosmetic" and others need life saving surgery. Anything to make us feel selfish and unreasonable for having feelings other than being grateful.
Maz - recon is so hyped and it is just that - a recon which seems to "belong" to the NHS and is no part of me, though I am supposed to be thrilled senseless I have this mis shapen painful lump where my breast used to be.
Suzanne - i think you are justified in being furious - I'm furious too and i don't really know what to do to make it better.
Love to all
I do feel sorry for those health professionals (Dotchas & Catkin) who have found their work environment so unsupoortive. If anyone had a right to expect some empathy from your colleagues and employers, it was you guys!
I don't think anyone who hasn't had this disease can appreciate that it isn't a case of in and out with the knife and fork, a few blasts of chemo and a bit of microwaving, then maybe pop a few tablets and bob's your uncle.
Any one of those procedures can produce lifelong side effects and problems (physical and emotional). A combination of all three .....well, I rest my case. And after all that, as Jane said right at the beginning of this thread, there's not even a guarantee of a cure!
I think we're all haunted by it, to a greater or lesser degree.
I am another one who feels anything but lucky!
I do know things could be worse for me as my prognosis is good,but "lucky" to have BC ........NO!
I think it is high time that Breast surgeons and Oncs began to treat the person and not just the cancer. I have had mx and recon and was told I could have a nipple done and any little nips and tucks done at 6 months post op.I turned up to an appt 7 months post op,full of optimism for my new nipple and a tuck to my back scar.Only to be told "Oh wait another 6 months!"
I very much got the feeling that they have removed the cancer so I should be grateful! Never mind that the lump on my back is visible through my clothes and affects my confidence big style!
I feel disfigured and now hate my body and wish someone would "care" about how I feel enough to do something to help me.
And as for colleagues,I sometimes wonder if they remember what I have been through as their only concern seems to be to get me doing my full range of shifts/on-call ( I am a health professional too catkin!)
No-one understands how we feel unless they have been through it or something similar.I met a friend who is awaiting a renal transplant and she really understood how I was feeling emotionally.It was nice to chat to someone who empathised.
Lets hope we can gather strength from each other!
Hugs and strength to all
Luck's a relative thing, isn't it? Yes, we're luckier than some - the prognosis for BC is better than many. But we'd feel a darn sight luckier if they'd have said, "Oh, it's OK, it's just a cyst."
And that thing about, "you're being very strong." What choice do I have? Am I gonna waste whatever time I may have curling up in the corner and moaning? But beleive me, even to my best friend I'd like to say, "I'd a darn sight rather you had this than me."
I'm greiving for the loss of my health - which has always been a very positive part of my identity. I'm very rarely ill, even with a cold. I don't want to be "the poor lady with cancer" - I want to be me again. I hate worrying about every little twinge. I hate looking at the survival statistics and wondering where I fit - but it's almost a complusion I can't resist.
I'm downright bloody furious at the timing - I'm due to retire in December, and move to the sea-side, and if this means I'm not going to get many long years to paddle and to sit on the beach reading library books, I want a recount! Why couldn't it have been in ten years' time, when I'd had a chance to enjoy my retirement for a while?
Ooooh, it's so good to be able to have a rant!
Well i don't feel effing lucky either, although i realise i have done very well, lots of other people have it much worse etc etc..........and i was extraordinarily lucky that the cancer was picked up by pure chance. it has helped me a lot to be able to realise that what i am feeling is GRIEF. i had lost my parents before getting BC so i worked out that the feelings were the same........about loss, loss of health and strength, and seeming to have suddenly become old, fat and ugly. not to mention incredibly unsupportive attitudes from colleagues when i went back to work, funnily enough i'm a health professional so a lot of those unhelpful remarks were part of the picture.......it is just like a bereavement, including people thinking you should be "over it" when you're still living every day with pain, discomfort and fear. however...........it does get better, i do feel grateful to be alive and most of my friends and my partner have been fantastic so it makes up for the few morons who say insensitive things........
hi all hope you dont mind me intruding but have read all your posts with interest and can relate to everyone of them ....i have just had recon for the second time the first was a complete disaster looked like something out of an autopsy had ld flap and this one dont look much better but only two weeks post op so early days .
my body is a mess ...very disfigured but because I look "fab " to all and sundry ..dressed thats all that matters ...never a minute of any day passes without me thinking of bc ..hard not to with the constant reminder!!!!but" I am so brave ! so positive and now to be cured !!!!" yippee ....wish someone would say those words only 16 months since dx and have only been told no evidence of recurrence ...not quite the same is it ??I know people mean well but if they have not been on this journey to hell they wont know will they ..anyway thanx for letting me have my say
Sharon - my heart goes out to you - some people do not understand at all and I can only send you love and best wishes because what you are going through is horrible and unfair and I hate that you have to go through this. What good is talking to a psych or BCN??? Will ity make you realise what a silly girl you are to fuss over it all and how lucky you really are? You are right - the living is difficult, wish there were words of comfort to say to you.
S - I can not imagine how it is to licve so long with the sword of Damaclees over your head and you are right the coy terms for horrific or dreadful "treatments" which rob us of our feminity make me angry. i don't feel like a woman at all an I am sad and angry at the loss of me. I hate the woman in the mirror. I understand furious and angry but ambivalent is interesting - why ambivilent?
Mole - I am with you 100%, and Topsymo - people just don't get it at all, obviously think Arimedex is really just fairydust. Your daughter is so young - it is so awful to endure, but especially so young.
Thank you all for your postings.
Take Care - esp S
Thank you, thank you, thank you for your posting, I am not a freak
I fully concur with all you said.
After 6 months of chemo and hormone treatment I am now booked in for a mx on the 6th April ( no recon ) oh joy. everyone around me seems happy that it is going to get "sorted", stuff that. I sweat like a pig, ache constantly, now got a limp, bauld, have to rest after ten minuets of ironing (not a bad thing), brain like mush, dried up and more than fed up. Went for my pre op assessment yesterday, lost it crying and weeping, upshot was staff called my breast care nurse to come and talk to me she was very concern so she and my onc have now referred me to a psychiatirst. dont know how that will help, prehaps there straight jackets and antidepressant can restore my youth,and magic this away. sorry to rant but needed it.
I dont want to die, and know there are many worse off then me , but the living with it is very difficult and dont no how I will cope after op.
my thanks again
sorry no answers for you but best wishes
You asked 'how do we move forward?'. I don't like the term, but it's a good question and I know what you mean.
I had treatment for my first primary tumour in 1993 and a second in 2004, so that makes 15 years that this filthy disease has kept me company in one form or another. I can say with absolute certainty that the last thing I feel is lucky!
Grateful to still be alive and able to derive pleasure from it, yes. Grateful that progress is slowly being made in unravelling what lies behind breast cancer, yes, altho' it's not nearly fast enough.
Angry about the barbaric nature of the treatments (including the coyly named 'hormone therapy'). Fairly ambivalent about the resulting disfigurement, most of which is not visible when wearing clothes. Utterly furious about the permanent and incurable physical impairments which have resulted and which detract so much from my quality of life.
In my book, being diagnosed with cancer is not an uplifting spiritual experience, not does it confer entry to some exclusive mystical club. And it ain't no 'journey', either! It's one of the most terrifying things that can ever happen to a human being and, to go back to your orginal question, once your own mortality is under the microscope, I don't think life can, or even necessarily should, be the same afterwards. But that doesn't mean it can't eventually be good, by your own standards.
Sorry to have waffled on a bit here....