I'm really sorry to hear about 'the look', they probably needed to prepare themselves first, that is just one of so many ways we don't get support, I mean from the NHS - a BCN could have spoken to the chaps, talked about that stuff with them, god knows it is traumatic for them too, and shown them photos to prepare them for the shock, indeed they could have done that for me too but they didn't, did they for any of you?
I actually asked before my first op what I would look like and the *&%$£ bcn refused to answer - in fact I said it 4 times and it was the only question I asked and I didn't hear a word of what she said because it wasn't an answer and I just kept asking what I would look like - once again thank God for the internet. The blokes will have to work hard to undo the damage after that look because you would just remember it, but I have to say before my op I had to brace myself to face the pics I found, and I was horrified but better prepared for the unavoidable horror of my own op. Even so, I hope they have apologized.
I haven't had that, my partner has been totally supportive but I suddenly lost all feelings for him, physical and emotional, and they have not returned I just feel guilty because he has been so kind. But I feel so robbed because I don't see how I could ever have a relationship, can't see this one reviving and can't see me forming a new one, my body doesn't work for me in that way any more and I don't think I even know emotionally how to handle a relationship, I feel that has all been taken from me.
And yes, my vicar asked me 6 months after, "Have you got over it now?" and I knew I had to say yes so I did; that bcn told me that another lady who'd been kind enough to show me her recon, had much worse problems than I did (told me what they were too, breaching confidentiality - what does she say about me to other patients and god knows who else? and since I hadn't told her anything else about my personal life what did she imagine she knew about it to make that value judgment? *&^%$!!) and that therefore I should get over it.
And your registrar Kat. &*&^%!! don't these people get training?
Liza ..... The docs are the only people I feel at ease with ...if you have had the look ..and you knw which one you never forget it !
Had my 9 month check up yesterday and the Registrar asked "if I had put it all behind me now?"
Thankfully I have been recruited to a focus group at the hospital to discuss aspects of care, they don't know what they have let themselves in for.
Maz, I've had that look of disgust too. I was promised a reconstruction after mx but probably won't be able to have it now due to skin mets. I know that fighting the cancer is the priority but the removal of my breast has robbed me of so much.I will never be able to allow anyone to see me naked again apart from the medics.
Hi all ...re the sex part ...i havent had any sexual for almost two years ...i hate the way I look although I have had recon ...twice !!! first on was a disaster ...have no desire to and wouldnt know what to do if my OH approached me as he has never seen the results of either op nor seen me naked since DX in nov 08 the first time i tried to show him he looks disgusted and it crucified me .i will never forget that look ...i look like an autopsy although my PS is amazing after 3 ops you get a fair bit of scarring ....wonder if I will ever have a physical relationship ever again ......I think not bloody bc ...and I am lucky !!!! yeah ...rite
Welcome Rhi and Lolly - Friend bought me a Tshirt (emphasises my uneven pair extremely well). It says "Stay Calm and Carry On", which is what she wants me to do. M mum got cross and asked me where Jane had gone....aaah, maybe she is starting to get it!!!
Leadie, my experience is that I felt very sexless but needed intimacy during chemo and surgery, my sexual feeings have returne but not the confidence to act on them or the enjoyment of my body. I am on Tamox since end of March. I look and feel ridiculous in pretty lingerie and know I could not let anyone see all of me now so it's a duble edged sword.
Rhi - it's just not fair is it.
Love to all
Jane or the woman who is posing as her....x
Heres one I thought Id share.....
Today one of my "friends" who knows all about my bc, induced menopause, and the removal of my ovaries in 8 wks time, said to me "Would you have any more children?" !!!!!!!
I wish I could forget as easy as they do!!!!!!!!!!!!
Dear Rhian, yes I think you get the most chocs cos that's a lot of reading!!!
Want to mention sex...........for me, I now feel completely sexless!!!! I have only been with my partner for just under 2 years and feel very sad that I have lost all sexual feelings. I actually feel numb when we have had sex which is very seldom. I have talked about it with him and he is amazingly supportive. It is only 6 months since I was diagnosed so it is very early days and am hoping a feeling or 2 may return in time!!
I am lucky in that I've only had a lumpectomy and it hardly shows so it's not as if I am struggling with what some of you are going through ie the mutilation of a breast or both.
But it feels at this moment that I wouldn't care if I never had any sexual contact again
Love this thread
how wonderful you all are for sharing this stuff , reading all the posts.....(yes all!!!! so does that mean i get even more chocs, i need them to feed the other person that seems to be getting into my clothes with me...well thats what it feels like, even my 'loose' trousers i feel another body has got into them with me they are so tight). No one understands why i get so angry with it all, my belly is bigger than my boobs, my bald head looks tiny tottering on my inflated body. I ache like hell. i am half way through radio, 17th of 30 yet radiotherapist seem surprised i am aching so much!!!! oh and everyone tells me i look WELL!!! WTF does that mean , i then feel guilty for looking that way. yes some strangers do say some good things i have to travel into London each day for my rads and i have found people do smile , comment, even on the underground and that is good and makes me smile. i was a sexy 46 year old starting to enjoy life and that has been taken away from me and i just want to scream....and i do and reading the postings makes me realise we are all screaming together
love rhi xx
Actually, just for the record - I did have nice things said to me by nice people. One lady I know just came up to me in the street a few weeks after my op and gave me a big hug and said, "It's a terrible thing that's happened to you isn't it." I had others similar. Lifesavers. Balm. Kind, lovely, generous people - eternally grateful.
It is because I had that, that I can feel the contrast with what I got from the surgeon and others - I don't mean I expect him to fall on my neck and weep, but it was the acknowledgement, it is so simple.
I know it can be hard to find the right way to deal with it and I'm no better than anyone else, though I hope I would never dismiss or belittle what other people are going through, even if I might be clumsy with the words. But shouldn't doctors and BCNs know by now how women feel about this, even if they haven't got the imagination there is plenty written about it - haven't they heard, don't they read, why do they think they've got a right to pretend it is a small thing? Why do they think they've got the right to tell us to get over it? I hate myself for thinking how would he feel if he had to have his penis amputated? I don't think he'd appreciate it if his surgeon told him to go and get on with his life, or that he'd just lost a bit of confidence in himself which he'd soon get back - which is how even BCC here treat 'body image'.
Like you say Jane it's a production line - I feel I was sacrificed so he could practice his art, which as he sees it involves the wielding of the scalpel but has nothing whatsoever to do with the human implications of the carnage. Our vet was more sensitive with our bunny.
Actually Evie, that is both comical and tragic. Unless you wear very bizarre clothes. How dismissive of him to say that - does he not realise that your body is the only real thing you ever own and that scars and missing bits are violations of our only true possession? i think that is why i am so angry at myself for letting bits of myself be cut off - I think i would rather be whole, like Snow said, and still me.
But of course he doesn't - it's a production line where the self important save our lives and expect us to be endlessly appreciative however botched up we are.
That said, i have read posts from many women who have positive things to say about the state of their post op boobs - my best wishes are with you.
I am a newbie being diagnosed on 24th april with grade 3 BC no lymph node involvment.
Every person i have told has told me it will better when the cancer is taken out..! what a stupid saying! And it bloody wont be better!
I asked the consultant about scarring and he said nothing would be visable when i am dressed!!!! Durrrrrr, i should hope not!
Hi All and welcome Palamino, Abby, leadie and Maude (and anyone i missed).
Pal and Snow -those thoughts mirror mine. Sno - the Onc sounds so patronising - let them worry. Well, i don't suppose they lose a moment of sleep over it. I too feel I died or that I went in the bin with my boob. I hate me; time, being busy at work and so on do not ease the pain one iota. I feel desolate and it actually gets worse. I don't know if I am "better" now ; other people seem to think that I'm cured. All I know is I don't feel good in any area of my life and I have never felt this range of emotions in my life. I never smile and i noticed that I now have little downward marks on the sides of my mouth. I look bxxxdy miserable.
Maude - i want to go and slap the silly little pert breasted cow for you. Lindiloo - i wonder about the woman who told you to forget. How can anyone "forget"? Are they never naked?
Oh yes - lastly, I went for a meal with a man at the weekend and worried the whole time about at what point one should reveal the fact that I am not as other women...then realised I was too terrified and ashamed of my body to go on a second date anyway.
Just thought I would share this with you. I got my date for my mastectomy and my friend had asked me to let her know when I got the date but I couldn't get hold of her so I texted her daughter asking her to let her mum know for me. Her daughter texted me back saying "it will be so much better when you have had the operation".
I screamed at the phone "HOW? How will it be so much better when I have only got one breast?!!!!!!!!". I could have done without a 25 year old dolly bird saying that to me!!
I feel so much better now! LOL
Hi all - Palomino, hope you've got enough chocs, I read avidly - so recognizable what you say. And Jane - I have had those thoughts, I am a little further on than you, at 4 years, and it changes constantly, though I resent 4 years - in some ways it is like 4 lost years: I said back then "I died that day" and far from feeling lucky I felt they'd taken my last good years, I could've gone on till I got sick and died, and it might have been 5 years (which would give me a few more months!); I might already be dead of course. But I would have stayed me till the end; now I don't feel me any more, I don't know what I am. And the jolt to face your mortality rather earlier than expected, now I fear death - sometimes more, sometimes less, but the grim reaper is my shadow...
How lucky is that? Abby your comment made me laugh out loud!
But like you say, it is the doctors and nurses who treat it like it is nothing, they discharge you at the end as if cured of a mild illness. My surgeon actually said to me "You're cured, go and get on with your life." !&"%*7!! Try to speak, feathers come out...They railroaded me into surgery on a whirlwind, I hardly had time to take breath and then they chuck you out at the end and they think they've done you a favour and don't understand why you're not saying thankyou - well I didn't say thank you because I just didn't feel that way.
Interesting, listening to Gill Hicks (Hickie?), the lady who had her legs blown off on 7/7 - she, like many, is deeply grateful to the health workers who saved her life, and I fully understand how she can be: but on that day I had a consultation with a surgeon who dismissed my questions about womb cancer with a wave of the hand and "Oh we can cure that" (yes, by further dismembering me, why should he worry about it when it is me it could happen to) and when I asked a further question about tamoxifen and stroke met it with "Let us do the worrying for you", did not give an answer (I later got a full answer from BCC Ask the Nurse), and proceeded to invite me and my husband to admire the heroism of the ambulance services who were all out attending to that emergency (so clearly not pushed for time then if he had time to stop and receive our admiration but not time to answer my questions). I wondered then if those poor sods would get the same treatment as I was getting a few months down the line when no longer a glamorous emergency...
Oh god there I go. I find some sort of solace with the poor sods coming back from Iraq in bits. Please don't anybody take that amiss, I don't want to exaggerate my situation or belittle theirs, but I just mean they are having to face irrevocable loss, they have had so much taken away from them, and have to try and find a way of living with it, and I feel that too. What I would like is recognition, acknowledgement, from the breast cancer teams that that is how it is for us too, instead of them belittling our predicament.
I don't go to hospital check ups because I could not go through that again; I went to a physio last week for problem with neck and back, she insisted on taking my blood pressure god knows why I said I didn't want it I wouldn't do anything about it and I didn't want to know but she sprang it on me like they do and needless to say...So now I'm waiting for my stroke to happen, or heart attack...
Swearwords! love sno
Hi Palomino ...chocs for me mmmmmmmmm.....I read your post with great interest it sounded very familiar ...my family especially my OH ..NEVER talk about it if I mention it he says that I am obsessed ..he is annoyed that I come on here and chat to people that I have never met ..specially about personal stuff .well I say thank god for you all as he wont discuss any of it .I feel like that I live in a breast cancer bubble !! I have at present "no evidence of disease" 18 mths on from DX .which is great ,but every hosp visit is a nightmare wondering will it ? wont it?...I get sick to death of being told I look fantastic ....stunning ....amazing ..i wonder what the hell I looked like before as no -one said that about me then .I too have a nippleless ld flap breast and yes my PS is my hero he has don a fab job ,it will never be like my original boob but that has gone forever and taken the frikking cancer with it so ..I am lucky in that respect ...but unlucky that I had to get BC in the first place. I used to be a bubbly full of life person ...some days now I am a miserable cow that hates everyone around her !! and I hate feeling that way I want the old Maz back but she went along with the boob !!!!Thanx for listening ....i love you all xx
Welcome back to the forums from me too,i remember reading some of your earlier posts when i was going through treatment , i also felt very moved reading your thoughts and feel exactly like you and the other ladies here.
I think it is impossible for the outside world to truely understand what its like to be DX and liveing with cancer. But i still cant believe some of the ignorance shown by a lot of people, And even by some who have had cancer themselves.
When i finished treatment one lady i know told me to, "forget about it now its over" this lady actualy had BC herself 25yrs ago and had a mastectomy with no other treatments at all, she firmly believes that her breast cancer was caused by a knock to her breast and told me that its was impossible for her cancer to come back as the surgeon "cut so deep" ummmm, another woman told me that breast cancer was the best sort of cancer to have "as they can just whip off your boob" , wonder why the medical profession hasnt though of that one? i realy get so frustrated that most of the outside world just hasnt got a clue,i too tend to not talk about it anymore to most people because im pretty sure they dont want to hear it, most think i should forget about it and just move on.
My husband doesnt talk about it either, so i thank god for this forum where i can talk to others about how i feel and know that i am not alone with my thoughts and feelings. I too have put on weight since chemo and takeing Tamxifen and i hate this new flabby person which was once me, i feel old with aches and pains and am always tired, but to the outside world im fine, but like Ledie says ,the reality is that all of us here have to live with the fact that we have had cancer and the uncertainties that go with it, Cancer has a huge impact on our lives and its something the outside world can never understand. So i keep smileing and keep saying "im ok at the minute thank you" if anyone asks, and come on here where i know il get some help and support.
Thank goodness for the internet.
Love to all
Hi Palomino, please send chocs I got to the end of your posting!
I felt moved by reading your thoughts and thanks for being so honest. somehow we can be honest here because ladies know what it's like. In the "outside world" honesty is much much more difficult,because people do not want to hear anything negative! It's all about being brave, yes it was caught early...could have been worse....don't they do wonderful things these days.......screening is such a wonderful blessing......... you can get on with the rest of your life now.......[message meaning, don't talk about it any more!!]
The reality is that we have to live with the fact that we have had cancer, may still have it and have to live with this for the rest of our days and somehow we have to find a way of living like this that we can cope with!!!
Thank goodness we have these sites where we can share because we all know bits of what each other has been through!!
Good that you have posted again and get support here
Welcome back to the forums. I'm sorry to read that you're feeling this way. If you need a good 'listening ear' then please do phone the helpline, the staff are here to support you and may be able to suggest ways of helping you through this. Calls to the helpline are free, 0808 800 6000 and are open again on Tuesday (due to the Bank Holiday) 9am - 5pm through to Friday and Saturday 9am - 2pm. (Normal working is Mon -Fri 9-5 and Sat 9-2)
Hope this helps. Kind regards,
hi i so understand how feel.this is the place i come with all my crazy thoughts my family think they know whats best for me cant bring myself my to tell them they will never undestand im sure they miss the pre dx person i was always there giving all suppost looking after grandchildren while mum and dad go to work doing all the baby-sitting i have 8 grandchildren 7yr down to 4mth and l love spending time taking then away on holiday ive been called a seriel mother due
to my ex leaving us just after we moved from cldyebank in scottland to glouster my girls were 5yrs ,7ys os it was just us with no freinds or family but we got on with it although their dads didnt hepl thing just turnig ug every couple of month sometime a year if it suited the lady he run off with.when i was dx and just back from surgery he text me saying he has always loved me and thought we should get back together i was so angry with him what a stupid thing to say he knows ive a sfantastic partner for 27trs i think he felt sorry for me and i should have been grateful for offer men are so on diffrent planet has anyone else had similer happen to them didnt mean to go on about it butwhen i start i get realy anger at the upset it coused my gils he thought he was doig us a faver
Great comment, Abby, I'll remember that...
Jane - hello - you are SO not alone in feeling the way you do, and thanks for sharing it so openly.
Haven't been around the site for a while and hello to you all - I'm 52, dx 1/08 after routine mammo, SNB, 2/27 nodes, Grade 2 35mm ER+, mx and immediate DIEP 3/08, Epi-CMF, 15x rads, started Tamoxifen in Dec, returned to work in Jan. And everyone thinks I should be over it.
I got an appt through the post today to see the conslt breast surgeon on 11 May. The last time we met was April 08, when he confirmed the post-mx results meant I needed chemo, rads and tamox. I have had a surge of absolute loathing for him today, anger, misery and tears. I hated him on first meeting after the core biopsy, didn't want to have treatment at all and felt he was more interested in my ex's opinions - my ex pays for the family's BUPA cover, and insisted I had private treatment. In reality all this meant was a massive bill for the shortfall in what they would pay towards the recon, as BUPA consider DIEP an unnecessary expense and pay only the cost of the cheapest implant. The surgeon was, I thought, curt, impatient and irritable. I can't even remember the BCN's name, I had very little contact with her. I think the NHS does a much better job on the support side, with BUPA you're left to get on with it. I did have some counselling post-rads, but found it sugar-coated, frustrating and not helpful.
The recon looks convincing when I'm clothed, so I'm lucky. I used the cold cap and kept my hair, so I'm lucky. My job was held open and the team are sympathetic and supportive, so I'm lucky. My ex (and grown-up kids, to varying degrees) have been helpful, so I'm lucky. The oncologist said last week, "You don't 'have' cancer, you 'had' it, now you've had all the treatment and you're doing well", so I'm lucky, aren't I?
But I too am old and fat, ugly and tired. I have my hair, and am grateful for that, and I have two surplus stones of blubber, a lumpy boob with no nipple, a wide (though smooth) DIEP scar, a still-sore SNB scar, and a shiny, itchy keloid scar where the portacath was. I have no confidence and no optimism, a sense of having been pushed into treatment to keep the family happy, and am left with overriding guilt that my ex has kindly met the considerable costs of fixing the ungrateful, angry and revolting cow that I have become.
We separated 12 years ago, and I had a brief and utterly blissful relationship for 4 years that ended abruptly and painfully a year before my dx, with a man who would not have handled any of this. My ex and his long term g/f separated shortly before the dx, and when agreeing that he would cover any costs that BUPA refused, he even suggested we could think about getting back together. For all the wrong reasons, I'm sure, though we didn't really talk then and we don't talk now. Whether I could have slept with him again without the BC is doubtful anyway - now I am absolutely certain I will never, never have sex again with anyone, never be unclothed in front of anyone outside a medical examination, never allow anyone to see or touch this hideous shell of a body, and never get emotionally close to anyone else because this horrid cancer has wrecked any ability to trust. I don't look forward to next week, next month, let alone a conventional future.
I don't trust my body, my coping strategies, my temper, my physical or intellectual competence, my ability to be 'there' for anyone. My youngest is 17, doing A levels. My elder two still live at home. I let them lean on me now almost more than before all this, maybe just because being utterly frazzled makes me feel I'm doing something 'good', and laundry and taxi service is just about all I can manage without thinking too hard.
The media coverage of the sadly very young Jade Goody, and to Wendy Richards, prompted my elder daughter to repeatedly ask for confirmation that I'm 'clear'. I'm reading, again, the books by Dina Rabinovitch, Jane Tomlinson, John Diamond, people whose cancers came back, and I snap at my poor daughter for pressing the point, for wanting an assurance I'm not able to give her. She's scared, but this is pushing us apart, I push everyone away. I can't accept my oncologist's neatly packaged opinion. I ask how I'll know if it's come back - he says it'll be no different from anyone getting a primary cancer, time to worry is when there are symptoms to worry about, just have yearly mammos from next week and be glad it's all gone so well. It's a good thing I like the oncologist - if the hated breast surgeon says that next week, I think I will flip.
Sorry for the long ramble, choccies to anyone who read to the end, and Jane, especially... I hope I understand how you are feeling.
I like too cheer myself up when well meaning medical folks tell me I am lucky by thinking, one in three people in their lifetime will get some kind of cancer so you might be lucky too.... :@) Hugs Abby..
Looks like i have a lot of catching up to do on this thread.
As i previously mentioned i had an MRI scan and my positive thinking didn't work. The results came back that i have secondary's to the bone and one of my vertebrae has collapsed, doing the waiting game thing again but will know more on the 13th when i get results from another MRI and CT scan. I doing ok, feel a little numb but still feeling positive.
Love and Hugs
Hi All, think it's really important to air the anger, rage, sadness and honesty here on this site. WE all know what it's like, people who haven't had a diagnosis of cancer really haven't any idea. How could they? I've been feeling really furious the last 2 weeks and haven't had anything like some of you ladies have been through!! But feelings of why me? It's not fair!! I suppose we have to work through it, talk about it and try! to put it in to context with everything else in our lives. I had an abusive, violent childhood and have spent years working on that. So when this happened I felt it was a double whammy!!
But life is not fair and s.......happens and we have somehow to make sense of it!!!
Love to all
Think it is the post surgery "high" that it's "over" and the self congratulatory medics who make you feel lucky in the early days. Reckon that many of us come back to earth with a bump when we realise that is is not over with surgery. Really do wish they explained it better and wonder why they don't? After all who cares if we have treatment or not.I feel that cutting my tit off just helped the Trust achieve a treatment target for funding.
I reckon more of us would just accept our fate if we knew what this reality was like. i can't see how living with this permanent pain physically and emotionally post surgery is worth it unless you have a really good reason for going through it. i drag myself through ervery day feeling guilty and selfish because others have the desire to live and are unlucky in their diagnosis, as the hospital/BCN are so quick to remind us if you reveal how you really feel.
So sorry you are having a rubbish experience too. It does not get easier - despite all the promises that it does. I feel worse every day and less able to say it as everyone thinks I should be over it and after all, I lived, did'nt I!!! I'm sick of the looking well comments - I must have looked so bad before....
Can't believe I'm joining in on this thread. One week after surgery I did feel 'lucky'. 'Lucky' that it was found and 'lucky' that I have a good prognosis. Now I almost wish I hadn't had surgery (bi-lateral mastectomy) and had my cancer back. To look at I appear to be well and get all the 'oh, you do look well' comments. Inside I feel like screaming at them and never stopping. Ever since surgery I've been feeling as though I've got a concrete weight on my chest and a band running from armpit to armpit that is getting tighter by the day. When i go for radiotherapy I feel as though I'm being tortured on a rack. I've now been told it's Fibrosis but I've been told that many different things that I don't believe anyone any more. I feel as though I've been deceived by the medical profession. You're told all the positives and very few negatives. Some days I don't know how I'm going to get through them.
The most recent tactless comment I had was today in a pub. Someone my dad and I knew. He saw me and said at the top of his voice 'God havn't you put alot of weight on!'
I am so fed up of people telling me how great I look!!! then when I don't respond with how fantastic I feel and actually tell the truth they look shocked!!! Goodness me, I am having chemo - my body and mind are not my own and I am SO SO SOOOOOOOOOOOOO fed up of people asking me if they have checked that I will not get cancer again - I spend so long trying to explain that there is really no cure - just fingers crossed and belt and braces treatment.
Yes I am pleased that I did find it - if the lump was anywhere else I might not have had such a good outlook, but its still crap that I got cancer at 29!!!
feel better now. none of us are lucky, its shite getting cancer, whether primary or secondary we would never choose this position just deal with as best as we can.
Dear Ladies, what an interesting discussion. I hate it when I tell someone about my cancer and a look of horror crosses their face! This has happened to me more than once! I'm sick of people saying there is so much they can do for breast cancer these days! And another comment is you can get on with the rest of your life now!! Yer-right oh!!
Lizzy you are so right. I know people who don't know what to say to me any more. Mostly it's men and the whole issue of it being my breast that's faulty is even more of an issue there I think!
I'd rather people said something "stupid" than avoided me. As you say, I'm still the same person and I can still talk about all the other stuff we used to talk about. I do try & cut these people some slack though and just fume silently to myself!
Completely agree, I have seen your posts elsewhere - and you have had similar route as me, I think - WLE, then rads. I DO feel "lucky" in comparison to others on this site - I feel I have been "let off lightly" - but that is for ME to say!! - Not random others!
As a good friend said to me (his mum had been through it, and he has really helped me) - "If you were THAT lucky, it wouldn't have happened at all, it's still a sh*ty stick, you've just got the less sh*ty end of it!"
Everyone deals with things in their own way, the info and support on here has always been great, the reactions from friends and family has, at times, been "interesting"! One of my neighbours used to previously ALWAYS stop for a brief chat if our paths crossed as we go in and out of houses, cars, schools.......recently, she scuttles off with her head down if she sees me! Does she think I will ONLY talk about BC? Does she think I am infectious?! Hello, still the same person here!
Best wishes to all
I think if one more person tells me I have to be positive, I'm going to hit them! I think it's uncomfortable for people to hear the bad news & subconsciously they want you to sweeten the pill for them by saying "I've got this cancer but it's ok, don't worry about it, I'm going to be fine". I have been told by several people that I'm lucky because my tumour was grade I, stage I with no lymph nodes affected and so the best I could have hoped for in the circumstances. Of course, in the circumstances that's great, but I'd rather not have the circumstances. It's all very well for someone without cancer to tell me how lucky I am!
The other evening I saw a family member for the first time since my diagnosis & was telling her the current state of play (part way through rads, breast rather contorted & lumpy). I was just being matter-of-fact, and not in the least emotional about it. She then started on the "well, you have to be positive, you're very lucky". To which I replied, "I am positive, but it's still crap!"
Luckily I have friends who are quite prepared to listen to me having an occasional moan about it without making moral judgements about my mental attitude to fighting this.
There must be a difference between normal and abnormal or what is the word for? We have to be able to spot when something is abnormal or we won't know when to go to the doctor, for example.
Normal is a value judgment in one sense - an ideal notion, and in this sense no-one is actually normal in that no-one is perfect. And we could discuss what exactly would be perfect and have different ideas about that. Also, in another sense normal can mean typical, usual or common. And in that sense it is quite normal to be abnormal in the other sense. And to say that someone is abnormal in the latter sense - someone, who, e.g. has had bc, given that a minority of persons has bc, does not necessarily imply they are abnormal in the former sense - except in the sense that everyone is in one way or another short of perfection.
I do regard myself as short of normality, perfection, in an additional sense since bc surgery, and god knows there was enough wrong with me before - please do not imagine I think I have gone from the pinnacle of human perfection to the extreme of human deficiency. Having a disease is in a perfectly ordinary intelligible sense a kind of abnormality; of course it is normal to get ill, we all do; also, having had an amputation leaves the body abnormal, in a perfectly ordinary intelligible sense of the word - a baby born like me would not be considered normal. How much anyone would worry about that depends on them. Some people don't worry about what look to others like enormous scars, say; while some people worry about what look to others like tiny blemishes. People are different about these things. My feeling about my body, the bodies of other amputees and whatever else goes wrong - wrong, in an ordinary intelligible sense of wrong - with human bodies, is that it is not a normal human body. It is falling short not only of the indefinable concept of health and wholeness which nobody in the real world perhaps ever actually attains to, or even wants, but also of what is common, usual or typical of the human body.
It is the human predicament to have one problem, failing, shortcoming, difficulty, deficiency, or another, or, god knows, loads of them. It is also quite normal to be sad about some of them. I have lost something. What I have lost was important to me.
The very opposite of what I mean when I say I consider my body - and by implication bodies like mine - abnormal, is that they don't have a right to be abnormal, or that anything follows about their status or worthiness as human beings, or anything else. It is not an implication of anything I have said, and it is not my view. I don't consider myself less worthy, only less whole. And, for myself, I don't like being that way. I can only see that as stating a fact.
I admit I got irritated by my breast care nurse at times, but I think it was from the point of view that she was more geared up for dealing with women who felt extremely vulnerable and weepy and I was quite strong throughout my treatment. However, she was very clued up as her mum has had BC twice, fourteen years apart and this was why she had chosen to specialise. When I was really worried about having my underarm clearance she visited me at home to explain everything. She also spends an awful lot of her free time running support groups, organising events and raising money. However, I had to speak to one of her colleagues when she was away and this other lady was the most dismissive character I have ever met being of the "get on with it" school. A few other ladies who were assigned to this other nurse have complained about her manner and have said she shouldn't be dealing with BC patients as she is so rude.
I've been quite sad reading this thread over the last few days. In my own case I would not want to step back into my life as it was prior to BC - I had an extremely stressful 5 year period leading up to this and I was at the stage where I was drifting aimlessly as I had pretty much lost the plot and my confidence with it.I now find I am much more focused (I've become self employed in the past year or so) and take on work challenges I would not have considered before as I just figure what have I got to lose?
I also like to think I'll be around for long enough to enjoy this phase, but am realistic enough to know my cancer could return and be a lot worse. For the time being I've learned to live in the now and I don't try to plan too far ahead. I'm just trying to live out each day as best as I can.
I just wated to add my experience re. earlier messages about the things people say. When i told my sister-in-law about a friend who had been dx recently (i was dx 2 years ago) she said " the dogs and cats in the street have bc nowadays" I was hurt and it is really hard to get this out of my mind.
I too have been very fortunate in my bcn.She is always,even after 2 and a half years,willing to see me or talk to me on the phone.She has never delivered meaningless platitudes but is ready to explain and discuss what is happening.I am very sad about what is still going on in my head but do feel I was allowed to make informed choices about treatment.
(This refers to a few postingd back)
I must be the luckiest one on here as I have an absolutely fabulous BCN. She's kind, sensitive, intuative, knowledgable yet open and interested to anything I've found out for myselfand totally supportive in every way. She would never say any of the terrible things some of your BCNs have said! She was concerned at the competence of some of the junior drs re breast examination, so went on a training course so she could do a better examination herself. I've heard her speaking to others (while we were having our chemo) and she was endlessly patient with those who were confused and frankly, not that bright.As to life post-treatment, she completely understands the anxiety we live with on a daily basis and the the lack of comprehension of the "outside" world. i've talked about issues with other people and she has stated that most people just don't have a clue about our experiences and our lives. Oh, she's also great at hurrying Radiology on with appointments and results, so much so that she's had rows with them and been told to retract or resign!
In all, she's the ideal BCN and I'm just very sad that so many of you don't have one like her or even half as good as her.
I have been following this thread with interest.
I think of myself as perfectly normal - although without a doubt i am now really disabled as a result of multiple bone mets and liver mets. The government even agrees with me as well and awards me DLA, which makes a nice change as usually I get into arguments I can't win with state agencies. Also my son is severely disbled by autism - I see him as a perfectly 'normal' person who has a very significant neurological problem, he is not abnormal. Who says what is normal ? There are 5 children with autism in my street- isn't that normal?
What I do think is you cross a line into where serious problems have ocurred in your life and you can't wish them away or resolve them happily...and once that happens you never go back, you go around with more empathy, a bit more understanding, and some sorrow. Alot of people don't understand that is the norm for many people in this life - after all 1 in three get cancer, people have to deal with all sorts of things, but also plenty of people lead totally charmed lives where nothing awful happens.
I have friends who have some of the disabilities mentioned in other posts. I do not hear them speaking of themselves as 'abnormal'...that is the language of prejudice used by some people who don't have disabilities...it is not empowering language. I do though have conversations about the social impact of impairment as well as the individual ongoing impact.
Each of us has our own response to impairment, whether caused by an accident or a disaese such as cancer. I do not see myself as deformed or maimed or other horribly dis-abling words.
The comparisons that people are coming up with are really good, and revealing. The tsunami was a couple of days after my op, and also I had a check-up on 7/7 - these were about 6 months apart but I well identified with those people because they were fine, then they weren't - shock. Missing bits. It's the shock that's still transforming and working through, and in a way I have been trying to work out what hit me ever since.
And one thing that I think would have helped is if they had said to me: you don't have to have treatment, and if you don't you will eventually die; or you can have the treatment we have to offer, which is likely to keep you alive, but some people consider it a high price to pay, and only you can judge whether it is too high for you, and the choice is yours. That is what I wish they had said. Up front. They said nothing. They gave no acknowledgement that for some women this is a very high price. They did not mention that some women have difficulty getting used to it, learning to live with it - what are the words to say here? They assumed, they presumed, and I was in shock and got swept along...
And after, when I said I was having problems they made me feel that this was odd, strange, unexpected, not what they usually get, they didn't really know what to do with me, they didn't appear to understand me (where do other women go? what do they do? why aren't other women telling them the obvious?) And I consider that very very poor indeed because god knows how many women have gone through this over the years, it is hardly unpredictable.
And I'm not saying I wouldn't have gone through with it. I might not. It would be my right not to. But I have always been angry because I felt they took the decision out of my hands. I am always asking myself was it worth it; before it happened to me my thought on bc had been, if I get it then my time is up because I would rather die than have that surgery; course I didn't expect it to happen to me. So I keep thinking I have paid a very high price, I have sacrificed a part of my life, and what's left of it doesn't look so great any more. But amputees go through this, people with spinal injuries, people who suffer major burns, road traffic accidents, people with major birth defects, and I also identify with these now - 'the disabled'. I feel myself to have crossed a line, from normality to abnormality (sorry people - I am speaking for myself here not for anyone else) and that takes seeing the world from a different perspective as do people who are or become disabled. I can only say I find I have things, feelings, thoughts, in common with people who have become disabled - lost their sight, for example, or the war wounded or whatever.
And that is a radical change of perspective, which they who bring it about should know about, prepare us for, and help us with, for those who want it. But they seem blithely unaware. They seem to think they are returning us to normality, but god knows enough of us say it isn't like that.
If I identify with anybody it's with those poor soldiers who come back from wars wounded and traumatised, get given a wee medal and discharged from the army, then left to get on with it and deal as best they can with the pain and terrible memories. been in the "cancer wars", honourable discharge, what do i do now? don't fit in in Civvy Street any more. i'm not too bothered about the state of the bod............it's the head that's giving me bother, you certainly don't just trot back and start living a normal life as if nothing had happened. my scar hurts quite a lot and i guess it always will. i do try to focus on the positive because i just know how i end up feeling if i let myself do the opposite, but i'm conscious of a lot of feelings of grief and anger. i think i did rationalise a lot at first.........very lucky caught so early, good treatment, recovered well from op etc etc but the reality is, i was angry and terrified and why the **** did i have to get this bastard illness when most of my friends haven't?
Well said Starflower. My experience is on a par and so is the experience almost every woman I have met plus many on here. I have learned more through this forum and the internet. Re the bus - Peter Harvey says the difference is we see the bus coming. And that is scarier than when you don't.
And sno, bahrons etc are all right in what they say. I've come to the conclusion that nothing helps at all. Why do they bother with all the treatment? They should make it clear what will happen and give us a choice. I told the BCN that I would not have had the treatment if i knew how it would turn out and she told me off for being selfish. How did a little,hardly worth the bother lump come to this??
But the NHS keep telling me it takes time...everything takes time, do not know whether that really means to just give up being upset about it all or magically be happy in your skin. Anyway, i have no confidence in the "Breast lack of care team". And they do not actually seem to be that successful in curing cancer - sort of cut tits off, chemo hopefully and round it all of with Tamoxifen in the hope it'll do some good.But what is the point in living like this. Sorry - more ranting.
A large part of my work involves speaking to parents of children who have been given a diagnosis of autism. They are often distressed and find it hard to cope. I would never dream of telling them things could be worse or that people with positive attitudes do better, and I would be ashamed if anyone who'd phoned me thought there was no point phoning back because I was "no help".
There should be minimum standards of professional competence for BCNs.
MY BCN is crap. I am not sure what she is even being paid for, because it does not take any nursing skills to hand people a folder of leaflets on dx. Every time I tried to talk to her about my fears she told me "any of us could be run over by a bus tomorrow" and when I last rang her, with pain around my scar, she told me it was "just anxiety". I have no faith whatsoever in a recurrence or new primary being detected, as I feel I have been labelled a hysteric for not being TOTALLY philosophical and positive about my dx, 2 x surgery and 6 x chemotherapy.
Well yes, Bahons, that would be something, I quite agree: they should acknowledge the choice is death or dismemberment, and that if you go for dismemberment they can't help you. Rather than pretending it isn't like that. Rather than promising help and then not being able to provide it. And generally pussyfooting around. I don't want to be treated brutally; I do want the the reality acknowledged, and my feelings handled with respect and sensitivity. I don't think the truth entails being blunt and callous. And given the truth, it doesn't mean, either, that it follows that we should "Get over it" or "Deal with it" - given what the truth is, it should be pretty obvious that some people are going to find it hard to adjust to and a little kindness would not go amiss.
I don't want to prejudge the magazine - and it does evidently have real people's stories. But what I want is the professionals who deal with bc to acknowledge the realities, sensitively, to the faces of the people they deal with. Because I think they cause more suffering by not doing that than is already caused by the bc itself, that's all.
Perhaps this is a step in the right direction - link to a BCC newsblog about a coping with cancer magazine.