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I don't feel lucky they "found it"

mazaroo
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Re: I don't feel lucky they "found it"

Sharon ....so soz to hear of your terrible ordeal ! I can empathise as three times I have had surgery all times I came home to an absolute pig sty .....and they had cleaned up !!!! I try not to worry any more as I just cant do the things that I did before DX and particularly after the recent op 4 weeks ago . I installed my self in the spare bedroom when I came home from hospital as I was so uncomfortable and wanted to be on my own ....I am sill in there and looking for excuses not to move back in with the OH !!! dont really know how much longer i can keep the excuses coming ..there is no reason for me to be in that bedroom .So what do I do ???? I am having terrible mood swings I fliiped last night big big style cos he was channel hopping and it was annoying me much that I even threatened to smash his plasma telly all 42 Inches his pride and joy I was VILE !!! WHAT IS HAPPENING TO ME ??? I spend every day in a wound up state and its doing my head in xxxxxxxxxxxxxRant over soz all.:{

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Re: I don't feel lucky they "found it"

Hi Sharon

What an abysmal experience!!!! Lovely to hear from you, but as snowhite says, don't overdo it. Ignore the house (it'll keep - trust me, I'm an expert on domestic filth), ignore the laundry (a few grubby clothes never hurt anyone), look after yourself instead!

Snowhite....

Perhaps, like President Truman(?), some of these health professionals should have a sign on their desks, saying something like 'We treat cancer, not people. Deal with it.'

In the absence of the steadfast refusal to take ownership of the problems the treatment causes, it would be an honest approach, if nothing else.

X to all (esp sharon)

S

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Re: I don't feel lucky they "found it"

Sharon - hope this catches you before they 'come and take you away' again back to the hosp. Dreadful ordeal, and how you could be doing laundry today when you were in that state a few days ago...please don't rush to do things when you get home, it is all horrible, but given that the deed has been done, you have to give your body time to get over the ordeal, and promise yourself a bit of indulgence - whatever you like doing, just do that and ignore the state of the house and everything else, just do something nice for you. Take care and big hugs
sno

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Re: I don't feel lucky they "found it"

Hi just dropping in quickly

Joined the ranks of one tit wonders on monday, everything went wrong, that night my blood pressure dropped so low that it could not be registered and I went in to cardiac distress, ended up having two blood transfusions , 4 units,had two doctors working on my all night with so many tubes,very frightening Surgeon attended ward twice after no word of explanation or reassurence did not examin my only my drains before pronouncing I could not be discharged until next monday, I have managed to fill 12 drainage bottles and 5 days post op I am still draining 400mls per day oh joy, as well as drains and bloody scar were once was pert boob, my chest stomach and remaining boob are currantly black.
I am able to post today because staff have taken pity on me and granted me 6 hours home leave, bloody state of the place I wish I had stayed at hospital, not only have I made my own dinner and done my own washing as well,happy to get that off my black, swollen chest hope to be home permently soon

Sharon BAS

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Re: I don't feel lucky they "found it"

Icy? - he wouldn't have been able to say that about me, he would have burnt more than his fingers and eyebrows - *&!!!*%$£!! - wonder what adjective he would have found for that bit of collateral damage?You must have been admirably restrained.

How we feel about things is influenced by 'where we are' and 'who we are'. We would never all feel the same about things, because we have different characters, different attitudes, experiences, circumstances. But for example, when you are 'in the thick of it', you may be preoccupied with 'getting better' - when you're seasick you're preoccupied with finding somewhere to be that isn't moving. When you are sick, you are focussed on getting well. When you know you're not going to get well, you know your prospects are not as they were and you change your objectives - not necessarily with serene acceptance, I don't mean that, some might, we are all different, but we view our world from where we are and from who we are and adjust our focus accordingly. When you are well, you act like a well person - I don't know, make plans, projects, enjoy doing them, etc. If I remember rightly...

What makes me angry is that breast cancer treatment is represented by those who give it as moving you from being sick to being well, in the sense of returning to your former state, for those who finish treatment with no apparent cancer. And that is simply false. After the treatment you emerge in a different world, a different dimension, and there is no way back. At least for many of us. Enough of us for that to be acknowledged as, at least, a possibility - and knowing that is material to our decision-making from screening, for those who have it, or from initial tests on first presentation, on to diagnosis and on through. At the end of my treatment I was told, in these words, "You are cured, go and get on with your life." After what they had done, whatever their reasons were for doing it, there is nothing more damning than failure to acknowledge the effects on the human being. Combine that with the lack of understanding - as manifest in the literature aimed at helping - of the fundamental existential damage to the person that is done by breast cancer treatment (and surely not every single woman needs to feel existentially compromised for it to matter, surely it is common enough) and you have a situation in which significant numbers of women are being caused serious heartache which is being ignored and dismissed by the professionals causing the problems, and compounding them by their very insensitivity.

JaneRA - I love what you say, but I don't feel the same way. It is only a matter of time till I am in a similar position, unless I have the blessing of a sudden death. In the meantime I am in a position of trying to find myself in some sort of life, and I am struggling with that.

sno

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Re: I don't feel lucky they "found it"

I think I'm sort of leaning your way on this one, JaneRA (but I can empathise too with Snowhite and Dahlia) - as there is a physical issue for me, but it's not mutilation, for altho' I have plenty of scars I feel as tho' I've been put back together as well as current surgical techniques permit, from an aesthetic point of view.

It's having a body that doesn't work properly that gets me down, frustrates me such much. I miss the little things that others take for granted. Such as the warmth of the sun on my arms, chores (I long to be able to clean more than one window a day - never thought I'd ever say that!) - and having a normal libido, of course. Even being hugged can be painful (and causes problems).

I don't mind too much what my body (at least as far as the bits that are normally covered are concerned) looks like - perhaps not having much of a libido is sparing me that? But being unable to carry out basic everyday tasks is incredibly depressing sometimes. Not always - most of the time I'm OK (not glad, not 'positive', not 'inspired', not ' embracing the new me', just bog standard OK-ish - I wasn't born this way and I can remember perfectly well what it's like to feel wholly functional) with how I am because on balance (some days, just!) I am glad to still be here.

However, occasionally I get more angry than depressed about this and the anger is not because I've ended up in the state I am now, but because there is so little meaningful support for, and acknowledgement of, patients in this situation. No warning, either.....which is the worst, in my view.

Jane, your tastebuds will recover I think, but as usual and always, it 'takes time'.

Another rant. Sorry, everyone!

X

S

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Re: I don't feel lucky they "found it"

JaneRA - do not be sad on my account. It's bad enough carrying the guilt of self pity never mind other people's dsicomfort about how I feel. You have my unstinting "support" in your views even if I don't share them all.

Jane

Thanks for the thanks. It is good that we can be totally honest on here. Good luck (luck???), good wishes to those that can still love their bodies. We may not BE our bodies or JUST our bodies but I'm afraid I am mine. I am identified by how I look. When a friend, relative, whoever looks at me they identify me AS me - how else would they do it? I suppose over the telephone they would recognise my voice 9 times out of 10 but, by and large, I am recognised as ME by the flesh, blood and bones that form my body. I have listened to Deepak Chopra and I am NOT a tree or anything else that he might fancifully suggest. I agree with him that the universe is infinite etc. etc. but what is here and now and typing this diatribbe is ME, there is no getting away from it - if only I could!!!

Putting it in an extreme, you might say that my body and mind have reached a Decree Nisi and the Decree Absolute will come with death. No doubt people will shrink from that and perhaps shriek at it but it is how I feel and have felt for very many months.

I do envy those ladies who at least claim that they are happy with their maimed bodies. I know the language isn't attractive but mutilation isn't attractive and it is an entirely appropriate and proper way to describe what has befallen me, mutilation, amputation, disfigurement and more - they are all precisely correct. I loathe the euphemisms as much as I loathe my body. BCC won't come into this minefield, it was tried last Jul/Aug with weak podcasts that insisted on "body image" issues and I insist that it is BODY and NOT body image.

Public Holidays are obviously not good for me, I rant too much!

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Re: I don't feel lucky they "found it"

Dahlia, Snow - totally agree and it is as if you are reading my thoughts.

Jane, I feel ashamed to be so ungrateful of having, presumably more years ahead of me when you are clearly is a much worse situation. But in a way it feels like the difference between the death sentence and life imprisonment - neither is good. I can not fathom how people get to enjoyment of these ugly, maimed post surgery bodies. Everything about me revolts me - it's not a feeling - it is a fact that I am maimed and ugly. My mum is shocked and embarrassed at my appearance, her words and expression did not match at all. Food tastes of nothing since chemo, the only physical sensations I have are numbness or pain - I am not a great intellectual or a spiritual person, so there is no pleasure/ reward or whatever in the mind. What I enjoyed most was a dance, a good meal, a drink and sex and all that has gone.

Jane, as ever you are inspirational; I admire you for making so much of your time and your generous sharing of knowledge and experience. I am glad you found a way to make peace with your body.

Best Wishes to all

Jane x

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Re: I don't feel lucky they "found it"

While I hate all that trite being positive stuff and all the untruths that are told about the experience of having breast cancer...nevertheless there are some posts here which I feel sad about.

I hate reading about people who feel deformed and mutilated or those who feel they are a freak. Horrible abusive words. I have never never felt like this about my body. After my mastectomy I thought my scar looked neat and I quickly got used to my new body shape..I didn't feel unsexual. In the two and a half years after my primary treatment I regained my stamina, enjoyed stuff and was yes was grateful and glad to be alive. Now, two years after a regional recurrence which will kill me I guess my chest and shoulder and arm look pretty gruesome...a swollen arm, lumps straining under the skin of my mastectomy scar and across my neck..blue and purple veins discolouring a wide area. I would live gladly with this too if I thought my life could be saved..but it can't and won't be.

I think there is a 'middle way'...that is more real than the sugary sweet platitudes the breast cancer charities often make about post treatment feelings...but one that does not end up saying that the surgery and treatment for breast cancer is maiming, disfiguring or mutilating. We are more than our physical boides...yes our bodies are hurt both by cancer and its treatments but I don't want to join in a chorus which describes post surgery bodies in such horribly negative ways.

Actually I am very glad to be alive...life feels more precious I think when you know you haven't got much more of it.

Jane

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Re: I don't feel lucky they "found it"

I should make my opening line "don't get me started" ...

Snowwhite and I share anger and frustration on the topics covered in this thread. I never now use "lucky" in relation to myself, I cannot do it. I also cannot think that the fact that there are people worse off than me is anything but a touch of schadenfreude and not something to indulge in. The experiencved and insightful Elaine Sassoon said to me when I met her "how are you?" and I replied "things could be worse". I'm not sure why I said that because 99% of the time I just say "fine, thank you" but something made me say it and she said "yes, but that doesn't make it any better for you" and how right she is. If I'd said that to my (then surgeon) he'd have sighed and if I said it to my current surgeon she'd frown and tell me I'm not normal, yes she would actually do that. Professional immaturity at work.

3 years down the line I do still find myself wondering, in fact even more so than whilst in the throes of treatment, has it been a price worth paying and I really do find myself thinking it was not. This does not make me odd, abnormal, ungrateful (no, I'm still not a member of the "glad to be alive brigade"). I feel like a freak and I look like one, I hate my body and no amount of talking, counselling, therapy or whatever the hell else is going to change that. I have been mutilated, more than once, and I am constantly conscious of how best to cover up and I am tried of trying to "help" people understand this. The mecdical professionals want patient who conform and if you don't conform then you are classified as "difficult", "unaccepting of her bad luck" (yes, I actually found that subjective comment by my surgeon when I requested a copy of my entire notes), "odd", "icy" - icy was the first comment he wrote after telling me he'd butcher me, then I'd be poisoned and irradiated. I guess I should just have warmed to those concepts eh? I should have jumped up and down and fawned all over him as he started the grand and laudable process of life saving. That's what they do right? If they can't do it then they're disappointed. If they have to exxplain things and warn you of the likely outcomes then it's a drag, a real time sapper, you'll just deal with the fallout when it happens, you're collateral damage in the careers of the wielders of scalpels.

Oh boy, what a rant!

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Re: I don't feel lucky they "found it"

Yes, exactly, precisely. To everything said. They treat cancer, not people. And the stuff they give you - leaflets, pills, false reassurance - because it is easy to do that, and because they don't know how to handle actual human suffering. And death. Which is a bit of a shortcoming in their line of work. I don't expect other people to know how to handle that stuff, but isn't that what doctors do? And you're quite right Bahons, for some of us it is too high a price - but when they don't let you know the cost beforehand, and take steps to keep it from you so as to prevent 'undue worry' as you go along...

And I agree Jane it really doesn't seem like progress to be talking about cancer the way it is now

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Re: I don't feel lucky they "found it"

Love your last post Bahons..oh how I hate all that 'cancer made me a better person' stuff, let alone all that jouneying we are supposed to do. BCC leaflets are in general bland..one of the only really useful ones I think is the one about how to read your pathology report.

I have been railing against the whole 'think positive' empire since my diagnosis, and I find it so depressing how many people with cancer also think they have to buy into it. Thankfully the time when cancer was talked about in hushed whispers has gone, but often I think the current fashion to be cheery, optimstic and smiling through cancer diagnosis and treatment (up to and inluding death when you're supposed to finally lose the fight with a peaceful inspirational smile) is just as bad.

Jane

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Re: I don't feel lucky they "found it"

Couldn't agree more, Snottrags - and you're no ranter, either!

There's something very Stalinist about not wanting us to use the internet for help. It wouldn't be so bad if we were given comprehensive information face-to-face by someone (as Snowwhite says)properly trained and fully capable of delivering it compassionately, unhurriedly and practically. But we're not - what we're given often falls far short of what we need.

So it's no wonder that many of us turn to the internet to supplement what we've been told. They should be pleased; arming ourselves with knowledge is something useful we can do for ourselves. The NHS is not the sole purveyor of bc information and it's just as well, as most of us would still be in the dark on many issues. As snottrags says, most of us are savvy enough to sift information obtained from the web in some way.

It's not a crime to be negative in these circs. I for one, upon diagnosis didn't jump up and say 'whoopee, now's my chance to go on a 'journey', learn more about myself, 'grow' (whatever THAT may mean), become a better person'. I just thought ****, what a ******* nightmare.

I think we are expected to be 'positive' because it's a facade that makes life easier for the people who have to deal with us, that's all.

Now I'm ranting. Sorry everyone!

X to all

S

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Re: I don't feel lucky they "found it"

yep the leaflets are used instead of talking. my surgeon told me I had a growth not even cancer and then said we could talk about it later and packed me off to a mammogram - the line after the horse has bolted comes to mind. and the BCN gave me a pack of leaflets. so I sat there in the waiting room "digesting" my DX!!! not a very private place to cry. the poor receptionist was really embarrased as she saw the pack and had to give me another leaflet about the mammo. Am only 30 so didn't have mammo to DX.

I have found its not just the BCN my trial nurse and some of the chemo nurses hate it if you speak at all negative and they hate it when you tell them you have been on-line. why I need info and I am smart enough to filter the crazy stuff. I need to be negative, I am 30 should be flaunting my stuff before it heads south, out partying and enjoying my family not feeling like a freak and not at all femmine. I never wear makeup but feel I need to now to identify my sex!!!

soz for rant but it does help.

LizzyM
Member

Re: I don't feel lucky they "found it"

Hi there
Totally agree with the obsession with leaflets! Whatever stage, you feel they are compelled to thrust a leaflet at you. I was offered one on "What to expect when having a core biopsy" - great, except it was along with the cup of tea AFTER the biopsy...!

Personally, I have found the information I want on here, but not everyone comes on these types of forums, so some probably welcome the leaflets? I do feel though that they are used as an alternative to actually TALKING to patients in a lot of cases.

Lizzy

mazaroo
Member

Re: I don't feel lucky they "found it"

Hi all .... It is astonishing that all of us on here have been made to feel the same at some point in our treatment ....if I ever ring the BCN I feel like a hypochondriac ...as I am always upbeat and bubbly in front of them ...the one occasion that I did cry I felt like a freak .! other than you ladies on this forum I feel that I have no support my family tell everyone I am cured !! I wish that were true but my reminders will be with me forever ..this is the bit that I cant get people to understand how I feel about myself ....I have had reconstuction and am supposed to feel like I did before BC ...thats all it is reconstruction not a functional breast but as I have been asked at my age 53 ! why did I bother having it at all?

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Re: I don't feel lucky they "found it"

Not a rant, Snowwhite

You've raised a very valid point - and raised it very eloquently, too. This is very definitely a huge elephant in the bc room.

Perhaps women need to be able to ask 'what's the best treatment I can have without turning into desexed husk/disfigured shell/virtual cripple?'

But then you'd need to know that these were possible outcomes in the first place and no-one says a dickie bird about all this at the outset. It's only afterwards when you're scarred and in pain, your libido has disappeared over the horizon and your arm is effed, that a healthcare professional will airily tell your 'it's all perfectly normal', 'only to be expected' - which shouldn't give them carte blanche to trivialise and ignore it.

The answer to the above question might well be 'not very much', but quality of life has to count too. Most days I am truly grateful to live in an age where much can be done in terms of treatment, but on others I just feel plain mangled.

It could well be that the price we pay, coming as it does with no guarantees of success, is just too high for some of us.

I think there is a tendency to place too much reliance on leaflets; to hand a newly diagnosed bc sufferer a pile of literature (however good it may or may not be) does not relieve the giver (bcn, surgeon, onc) of their ongoing responsibilities for a patient. But it very often seems to be a case of 'Have I given you some leaflets' 'Yes? Good. See you next month, then...'

I have to concur with much of what has been said about bcns. When diagnosed with a second (more aggressive) primary 11 years later, the assumption was that I 'knew the ropes'. Never bothered trying to ring her after we fell out publicly in front of the surgeon when I told him she had refused to refer me to the lymphoedema clinic for three consecutive years....

X to all

S

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Re: I don't feel lucky they "found it"

Trouble is BCNs are just nurses, some of whom may have done a training course (which would be what? a seminar where they rush through the headings - chemo, rads, body image, secondaries, yada yada...) and some of whom don't even seem to have done that.

You're right, they don't talk to us - and this was my greatest fear on diagnosis - before, I had thought bc was the worst possible thing and I would rather die than have the surgery because it would mean the end of sex so what would be the point; never thought it would happen to me though, and when it did, well, I have kids (big kids)...

It so would have helped to talk over my worst fears, but I didn't raise it because I was in shock and because they were strangers and I didn't know how to raise it with them, and they weren't very sympathetic, and they don't raise it unless the patient does...catch 22 - you are so right snottraggs (!) about a leaflet, hardly a substitute is it, and the leaflets are rubbish.

It doesn't need to be the surgeon, but there should be an appropriate counsellor with specific knowledge of the sorts of issues, which ought to be well known because they have treated thousands and thousands of women over the years and god knows it is hardly an unpredictable surprise to be affected this way.

Bahons I just read that thread you referred to - like you say it is not a head thing, it is not a body image thing, it is a body thing - and they should discuss these things pre-screening (I know that doesn't apply to the majority who find their own lumps, but if they are going to invite people for screening then they have a responsibility to explain the implications, which they do not, that is why I am so angry), because not everybody wants to pay this price for their life, sorry to be so radical but cancer is fatal and it is an end of life issue. And after treatment, for those of us who have it, even if it is the end of sex as we knew it then we need - I sure need - someone to help me sort out where this leaves me, us, or is it just me now, god knows.

Help is very patchy, yet this issue is the elephant in the room, the elephant in every consulting room where a bc diagnosis is announced...oh I feel another rant coming on I'll stop now I'm just so glad you all are there, you are lovely ladies

love and hugs, S

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Re: I don't feel lucky they "found it"

I agree what is the point of a BCN, why is she wheeled in on DX and never seen again??? The surgeon was useless other than to remove the lump. BCN was annoying, and try getting a call back - more chance of winning lotto!!!

you are set on this treadmill and just off you go, no complete package of how to support you. Although before surgery I was looking through my notes and there was a big questionnaire asking BCN to complete about mental issues - never done!!!

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Re: I don't feel lucky they "found it"

I agree totally re the mental health support.

I still don't think leaflets where there is no interaction and response is the appropriate forum, I think the BCNs should provide this. Unfortunately I too am one of those who's BCN is rubbish.

Actually I have 2 BCNs, one at my local hospital where I was diagnosed and one at the bigger hospital 20 miles away where I had surgery (they don't do immediate recon at my local hospital). Neither one has done anything in terms of follow up. Yes, if I need to ask a question I can call them but they don't seem to have the time.

I contacted one of them about physio as I felt my arm movement and back feeling should be much more like 100% (they thought it was fine - "good enough") and she hummed and hawed for ages and then I had a call from a lady offering psychological support for those not coping with their treatment/diagnosis.

My BCN just wasn't listening! I wanted physiotherapy help not psychological help!

That said it appears there is psychological help where I live should it be needed but I kinda thought that was the point of a BCN?

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Re: I don't feel lucky they "found it"

Snow white, I think the main issue really is they don't talk to you. I feel processed and other than the physical removal of the lump I have been left to feel my way to any help I need.

My BCN annoys me so much, and she is apparently the young womens BCN!!! I feel like she talks to me as a child and as my cancer has not spread - "whats the problem!" Its so infurating. My sex life has ground to a halt, not just with chemo but now having a central line in My body is hijacked and my mind it too.

The hardest bit is just being given the leaflets to read like thats going to answer all the questions. I have loads and not at DX as was shocked and couldn't think. Where is the mental health support. My life has turned upside down. I look like a freak, my boobs are odd one small from lump removed the other swollen due to the line. I've been told I look "butch" now as hair coming back - makes you feel great.eh!!!

I know the leaflets are to cover a wide range and not everything can be put in but they really need the reality bit - that goes for the BCN too. wheeling people out like dummys is awful what are we puppets???

sorry for rant but just feel there needs to be more on the mental issues. Godness me when I was off on mat leave I had support getting back to work where is that kind of support????

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Re: I don't feel lucky they "found it"

Sharon if you're still around to read this - huge hugs for Monday.

Jane - your crit of BCC leaflets - spot on; I wrote to them telling them how unhelpful their stuff on 'body image and sexuality' is, but they didn't want to know, they thought it would upset people. Like we're not upset now. Coy. Yukky. Yuk!!!

That being said - ostrich, what you say is sound, but I am not there yet, and I disagree with one point - I don't blame anyone for the cancer, I don't blame anyone for the treatment - but I am very very angry about 3 things which didn't have to be so:

value judgements made on our behalf leading them to selectively inform us about what is to come, leading to greater shock than there would be if properly informed of possibilities;

needlessly insensitive encounters - and I don't mean slack slip ups that we are all guilty of and I don't expect everyone to understand me all the time, but I would have expected professionals in this area to be aware of the issues;

value judgements about the significance to us of the 'effects' (euphemism) on our bodies - fair enough for those women who consider it a small matter; but equally, fair enough for those women who don't.

And while I take your point about those brutal truths, would it not be possible for them to acknowlege the fact of the devastation, and the distress, and to offer comfort for what is an irrevocable loss of a fundamental nature with which they surely can identify? I know no-one can be all things to all people, but I do think that they are falling short of being enough to many of us. And they told me they could and would help me, but they haven't - it was just to 'buck me up' but it's done something which rhymes with that because I expected health professionals to be straight with me.

s

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Re: I don't feel lucky they "found it"

Jo, I didn't mean that we only have ourselves to blame for the way we feel about our bodies!!

I hate my LD recon and have said to my surgeon that it falls far short of my expectation and was surprised by his surprise. I pointed out to him that had I chosen to have a boob job for cosmetic reasons I would have expected a fabulous pair aftewards and would have kicked up stink had what I have now been the outcome. I told him that if its no use as a sexual object anymore then I certainly want it to look the part! With the hindsight of surgery 6 months ago and the added complication of having a wound that took 6 months to heal from the surgery I certainly wouldn't have gone for an immediate recon and taken time to consider my options but I don't blame myself for how I look - I blame the bloody cancer for depriving me of a boob!

I used to love my boobs and now, whilst my hubby and I have resumed a sex life and I no longer burst into tears halfway through, I still have to wear a bra or top and don't for a moment believe that I will ever be able to lie there completely naked in front of him and not feel self conscious whilst the boob looks like it does.

I think the one thing that I could have done with was meeting someone who had gone through the same op and let me see her new boob before I went under so that I had a "real" perspective and expectations rather than the hour with the BCN whilst she told me all the complications in gory detail whilst I sat trying not to faint and only half hearing what she said and some pictures of what I now assume were the "good" recons (I've not been asked for a picture of mine to show to someone contemplating it - I wonder why).

What I was trying to say is that unfortunately there is NO-ONE to blame, not ourselves, not BCC, not wine, not our partners, not the cat..... just the bloody cancer!

PS - I am not courageous - just a bit further down the line perhaps than you, xxx

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Re: I don't feel lucky they "found it"

Hi All

Sharon - best of luck for Monday and after. Love to all and best wishes for recovery - thanks for sharing so honestly. I'm sorry i am so miserable - i did not used to be like this and sending you much love for tomorrow.

Ostrich - thanks for your comments, you sound so lovely and I realise you make a lot of sense but yes, i wish i had known the reality and I would probably have chosen not to have treatment at all. Love to you too - I know no one but myself is to blame.

You are all so courageous and I admire you all for your wonderful attitude to this horrible situation. Good luck and good health to all.

And BCC - sorry.

Love

Jane x

mazaroo
Member

Re: I don't feel lucky they "found it"

Sharon good luck with the op xxxxxxx
Juliet nice to know you know where I am coming from ....xxxxx
The rest of you lucky drunks ...down the hatch ...i personally gave up alcohol over ten years ago as I had huge problem with it went to
AA the works how I never fell of the wagon when BC arrived I will never know ..which considering I didnt need any excuse to open a bottle is nigh on a miracle !!! so you see it is obvious that I was a basket case in training long before before BC 🙂 Ha Hea .. its funny I write stuff on here that I have never told anyone about ever in my life but you guys seem to understand more than anyone and for that just want to say Thanks..it is good to know that we arent judged ,criticised or made to feel inadequate on here just us xxxxxx

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Re: I don't feel lucky they "found it"

🙂
Sharon, you made me smile!

Hope the mx goes okay for you. Someway into a bottle of vodka myself so made it a bit more amusing for me. That said its a bummer that your OH fell asleep. I hope your op goes okay for your and you are right - we all have issues with our partners/lives etc and perhaps BC highlights these in ways we hadn't considered before.

Best wishes, hope you're not too hanging tomorrow, night night, x

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Re: I don't feel lucky they "found it"

Hi all
just popped in and would like to comment on lots of posts but I am now very tired and somewhat pissed. Just wanted to say ta ra for a while as going into hospital tomorrow for mastectomy on monday so Wont be able to post for a while, wanted a special get together with family and friends to say goodbye to my tit but no one was intrested, husband was supposed to take topless photo to add to my menory box but he fell asleep on the sofa! feel a bit let down, but sh-t happens, hope to see post going when i come out.
Jane try For one time to forget about the Cancer and deformed tit and go do your stuff dont need to mention anything unless it comes up, some one was right eariler that prehaps we are so much more critical and aware of imperfections than others. and I suppose we all want someone to appreciate us as a person, even pre bc, why would that change, you must have lots of really positive sides, work them girl
Bloody hell The booze is doing it for me. just seen how lat it is better get myself to bed
good luck all
Sharon c

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Re: I don't feel lucky they "found it"

tip toe tip toe into the lion's den go I.

Whilst I totally understand your feelings Jane and can see that you are in a horrid place right now and hope that you make peace with the effects of this horrid disease at least enough to find a new acceptance of the new you, I felt I just had to say.........

Whilst I agree that the "literature" is sometimes laughable in that it barely touches on the real issues faced perhaps you just need to see them as a starting point or as an acknowledgement or confirmation of what we go through rather than a brutal "no holds barred" information leaflet.

Would you rather read, in print with no inference or subtlties, - "you will feel, at best, half a woman for sometime to come", "you will cry mid way through sex for your lost sexuality", "you will pretend for sometime to come with your other half that this disease hasn't robbed you off any vestige of sexuality", "your sexual organs will dry up like the sahara desert and the thought of sex will, at best, make you yawn"?

It would be like reading, "25% of you will die" (have no idea of the statistics so just picked this out of thin air). You don't necessarily need the "in your face brutality" of it at initial dx but perhaps a "heads up" as to the possible identity of the truck that could be coming your way. BCC have tried to produce something to give women an insight into the possible problems they might face. Unless they do an initial dx leaflet then a, when you're a bit further along leaflet, they will probably get it wrong.

It is rubbish, it is crap, it does rob you of vast parts of your life BUT you can find a way to rebuild something (a ghost/a shadow of your life or even a new life) and forums and threads such as this or support groups, friends etc enable us to go deeper than the literature intimates we might need.

I have followed this thread with interest and can truly relate to how you feel, your anger, pain, distress etc and have felt and do feel them myself, I just felt I needed to "put my oar in" to say...

"love to you, you may stay angry for a short while, for a long while, the disease is shite, life is shite, we do find a way to cope but have times where we don't want to cope, there is no-one to blame and therefore no-one to rage against"

xxx

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Re: I don't feel lucky they "found it"

Dear Jo

It was really sweet of you to post these publications but frankly they are not remotely helpful to meand I suspect many - they are on a par with the "breast reconstruction" leaflet, which is totally pointlessly stupid and prepares no-one for the experience. What I really hate is the coy, stating the obvious but using the word "may" ie "you may be upset" type comments and not attempting addressing anything difficult, nor offering any sensible solutions (maybe there are none). The wear lingerie grates - ie hide yourself - what is intimate about that? Really sexy lingerie accentuates rather than hides. I also resent the inference that, if a couple have problems it's because the relationship was flawed - all relationships are flawed but bc certainly does not help and it is not a couple's fault if they can not cope with the aftermath. Snow White's post eloquently expresses what the writer of the leaflet should know before writing the leaflet. Sorry if that sounds cruel or blunt.

Other things that riled me include -The detailed drawing of a vulva, an especially odd touch. What is the point of that? And the mature contented couples - seemed aimed at mature marrieds rather than the wider range of adults. And the assumption that partners will be able to cope with our bodies and "intimacy" rather than sex. And the Karma Sutra - it isn't about positions, it's about closeness and intimacy, not gym class. And how does someone reconcile a mx with sexual gymnastics.

Welcome Juliet - I'm sad that you too are experiencing this.It is so horrible to lose the point of the marriage Maz - I empathise. Recon only looks good when clothed and it feels of nothing. Like I said, just a slightly more atractive mx scar but no way a "new boob".

I'm sorry. Nothing helps at all and the leaflets are particularly unhelpful, though i do appreciate this site, so thanks for that BCC.

Jane

Jo_BCC
Member

Re: I don't feel lucky they "found it"

Hi all,

I have put for you below links to two of BCC's publications that you/your partners might find useful to read. Hope these help.

In it together: http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

Sexuality and intimacy:
http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

Kind regards,
Jo, Facilitator

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Re: I don't feel lucky they "found it"

Hi Snowhite

Brilliant post.

In 'after treatment has finished', there was a thread entitled 'need advice on intimate problem', which also highlighted many of the issues we've raised here.

I think that part of the problem with health professionals is that they do treat thousands of women with bc and it's all in a day's work to them - we are so numerous that we cease to be both medically interesting or to stand out at all as individuals.

I also think that they believe that part of every women's 'toolkit' should be a better-than-layman's knowledge of bc. And maybe even a hint of the 'lie back and think of England' attitudes of yesteryear creeps in, after all, we're only women....!

Sharon - I too mixed up the names from a post, sorry.

Jane - you sound so low, staying in on a Friday night, not going shopping with your Mum today. Wish I could have invited you round for a drink...I haven't given up wine, btw. (I don't smoke, get shedloads of exercise, eat 5 a day, have a normal BMI - I ain't giving up alcohol as well!) Going out anywhere, if you possibly can, seems to help a bit, I think, and people notice far less about us than we do ourselves - we're not as conspicuous as we sometimes think we are, I reckon. And you're not being depressing, you're being honest!

X to all

S

juliet66
Member

Re: I don't feel lucky they "found it"

I have to say, after 9 years my relationship is exactly the same.
My Oh will not admit he finds my double tram flap recon, disgusting but actions speak louder than words.

We exist, co-exist almost as housemates.
Every time I bring it up, my feelings get poo-pooed and I am
repeatedly assired there is not a problem.

Have got to the point where I have given up, seems pointless.
Jx

mazaroo
Member

Re: I don't feel lucky they "found it"

Snow white ....and all I agree and relate to every thing that has been said ...my husband and I are just housemates these days no intimacy at all mostly my fault cos I hate my body and the breasts that were once objects of desire and responsive are no longer functional ..they serve no purpose other than a "normal " appearance when clothed ...i long for a hug ...some affection some contact but I know that he hates the way I look ! It is 18 mths since DX and I wonder how much longer he can remain in a sexless marriage ..unless he has done something about it already ..how would I know ? I hate this disease and everything that comes with it things will never be the same again ...am i grateful that at present i have no evidence of disease ....yes of course ..but I would rather have not got it in the first place and things were as they used to be ... Ihave changed in so many ways I wonder where the other me went ?

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Re: I don't feel lucky they "found it"

Er, sex...? I seem to remember that. Wasn't that something I used to do?...er, with my husband? or was that the washing up...?

It is really hard to know how to approach a relationship, after bc, new or existing - because everything has changed - would I start a relationship with someone who told me they had cancer? Or would I think, well, what's the point, they won't be here long and anyway they're all messed up because of the treatment? I think I would just have to play it by ear and let my heart tell me...And if my husband got cancer? Well, I would have to do what he has done for me, which is total support and kindness, only we have lost our way because I don't feel the way I used to, distance has opened up between us and it is like being only friends, and how long can I expect him to be able to handle that? But since that has happened to us, because of me, how would I expect to have any relationship? I feel I have had the point of a relationship taken away from me because I can't contribute in the right way, I've been neutered.

Bahons where on this website are the posters on this subject - I hadn't spotted any last time I looked, just the leaflet on intimacy which I found inadequate?

All this, and everything else, is bound to make us 'less bubbly' - what a great shame about cancer treatment that we walk around looking more or less normal on the outside, and can still function - so there's no outward indication of actual suffering, and why don't we know how to offer sympathy and a bit of comfort? we're so afraid of saying the wrong thing.

But, here I go again, the professionals should know better - it is their job - not necessarily GPs who are not specialists, though mine has been as helpful as he knows how to be, but those at the hospital - I am writing to them saying I think there should be prescreening counselling to help us understand the implications of bc before we get a diagnosis, and also that there should be much more known about the sorts of problems we have once diagnosed and treated, given the many many thousands of women, and years of treating it and so there should be better support throughout, and in the aftermath - so many women are saying the same things, yet when I went to that Macmillan Clinical Psychologist she didn't have any idea - I think she only had experience with terminal cases.

I just cannot believe the crassness of a BCN who flashes cleavage; or one who will, as one of mine did, have a conversation about the intimacies of mastectomy with another patient a couple of seats along from me in the CORRIDOR!!!!! I had to walk away, I thought if she tries that with me I won't be responsible...Or the one who trotted out an elderly lady to 'encourage' the younger one. GRRRRRR! How can someone in her position be making that mistake - that because we're standing up we're okay? Isn't there a training course? But you wonder if a training course could get through to people like that...they'd go on it and think 'what a fuss'. But then the training course has to be better, and the selection process for allowing people to specialize in this area - who is it that appoints a BCN who can say the things that were said to me by one of them? Oh god...

s

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Re: I don't feel lucky they "found it"

It's not just sex though is it - it's feeling attractive and desirable, not like you have cancer (reckon a lot of recurrence is they did not clear it in the first place) and a disfigured and disgusting fat bald sweaty body. Or a hug being too painful due to the wound healing.

Flirted with the idea that the drop in oestrogen is what is making me so low but think it is reality. Boss suggested anti depressants would be a good idea as apparently i am not as bubbly as usual. What happens when you stop them and see reality?

Mum asked if I wanted to go shopping today but the idea of trawling round has no appeal for fear my wig may fall off, I will get a hot flush and destroy any thing I try on, or the odd shaped tit will look odd in clothes. I feel like I am living out of a suitcase in a way - can't go back and can't go forward.

God, I am depressing. Mum says she is sick of my miserable face and I don't blame her.

Love

Janer x

cherub
Member

Re: I don't feel lucky they "found it"

I use a low dose topical oestrogen pessary once a week, but I had no hormone involvement. I had to use it every day for 2 weeks, then twice a week. I've now cut it down to once, but the oncologists told me to eventually try cutting it out for 6 weeks to see if I can come off it completely, I'm planning to try this when my current box runs out in about 4 weeks. They said if the symptoms start up again to go back on it for a bit and to keep trying to stop and start it. It's a tenth of the daily dose you would get from HRT and just keeps the mood swings and dryness at bay. Before I went on this I was having very bad panic attacks and I knew I could not keep on that route as it was affecting my ability to work and study in a big way.

The menopause specialist they sent me to said they do offer HRT to women who have had BC, but only if their quality of life is very compromised by the symptoms. I can totally understand women not being able to cope with menopause as I have known 2 ladies whose mums committed suicide back in the days when women were expected just to get on with it and the only drugs available were things like valium. I also had a school friend whose gran jumped from the balcony of her flat 15 floors up as she couldn't cope with the symptoms any longer. I don't think we would want to return to those days.

mazaroo
Member

Re: I don't feel lucky they "found it"

Wish I had it ??????? lol hahaha

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Re: I don't feel lucky they "found it"

Mazaroo
Course your forgiven, wished I did miss it.
Love
Sharon C

mazaroo
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Re: I don't feel lucky they "found it"

that was my fault I read the name on the thread wrong ......whoops !!!! forgiven .?????

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Re: I don't feel lucky they "found it"

Oui you lot where has sex and my name got linked, I miss hundreds of things, for me sex not one of them, I have too have a doze ater a shopping trip, if I had the strength I would use it to wash my smalls. but I do fully appreciate the lose those of you who not having a fulfilling sex life.
Well tody got all me bits for hospital I hope for plenty of wardrope space, sorted all little uns favorite foods to take down nans. not much to do now other than shave my armpits, getting a little nervous now, also bought loads of mind boggerling sh-t mags hope they send me to sleep.
best wishes
Sharon C

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Re: I don't feel lucky they "found it"

It's Friday night and I am not going to work. Pre bc I would have gone to wine bar and enjoyed wine (now I can't enjoy it if I drink it for fear it will cause another cancer after all the recent press articles). I would have perhaps got chatting to someone and who knows, maybe romance down the line. Now I can't even think of glamming up with a manky tit, no hair and the saharra down below. I feel 100 yrs old and I am so peed off about missing thse fun, sexy sophisticated self confident "middle years". I know others are worse off, dying and leaving little kids but where is all the fun? And romance - that's what makes it all worthwhile, esp if you don't have little kids.

I too am feeling peed off tonight. TV is not my thing and I am no fun anymore.

Signing off before I depress you all

Love

Jane x

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Re: I don't feel lucky they "found it"

Snap, Jane

No-one mentioned a menopause clinic to me, either!

I've had two ER+ cancers and every time I've raised the subject of hormonal creams, pessaries, etc with oncologists they've said under no circumstances whatsoever should I use them.

I not sure why some people with ER+ cancers are told by oncologists that they are safe to use, and others, like me, are refused them point blank every time - I've asked more than once. Would love to know WHY. I know why I've been refused them. There is a school of thought that oestrogen can enter the bloodstream from these creams and pessaries. OK, then, in that case why does anybody (except triple negatives, for whom, I presume, they are without doubt safe) get them if they entail a degree of risk such as that? (I'm feeling hard done by, today, you can all tell, can't you? Sorry!)

Products such as Sylk, Replens, etc can help with the mechanics, but they are no substitute for a libido.

Sharon, last I heard, sex is something non-bc women get up to! Oh, it's all so sad, isn't it?

Jane, I do so agree. This shouldn't be just another thing we have to put up with - there's too many of those already.

X

S

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Re: I don't feel lucky they "found it"

Hi All

A menopause clinic sounds a great idea but don't think they exist in my area, certainly not met any women who have been referred but met a lot who are sad at the end of sex lives. I don't think my onc is very interested in her work or her patients quality of life. Seems to think that we should just crack on now our lives have "been saved" and certainly likes patients to display a stiff upper lip. At my last vist a young woman who is due for mx was crying so BCN trotted out another, much older patient and said something like "she's had both off and she's doing great". Older woman must have felt like an exhibit though she smiled and was a good girl. The young woman asked how the husband felt and the older woman said that they had given "all " up years ago. And I think the truth is that they just assume most people are not that active physically or if you love someone it should'nt be that important. Newsflash, it is for most of us whether there is someone special or not.

Castrated - that is a good word for this.

Take care all

Jane x

mazaroo
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Re: I don't feel lucky they "found it"

Sharon whats Sex ?????? Please remind me !!!!

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Re: I don't feel lucky they "found it"

This is SUCH an interesting thread - like so many people I am finding that the 'telling it like it is' aspect here really chimes with many of my own feelings. Brilliant posts, everyone - take a bow.

Someone mentioned how tedious some doctors seem find explaining things to patients. It's very sad - I know they must see hundreds of women (and some men, too) every year, but they should realise that for us it's not a run-of-the-mill occurrence and that many of us haven't researched bc and all its ramifications in depth on the off-chance we might get it.....

Credit where it's due, I got on very well with my surgeon (altho' I know a lot of his patients didn't) - who was a very straight talker. Onc (female), however, liked to spout statistics and look at the wall above my head....

I do wonder about bcns, too. I think they are paid a very good salary (saw an ad in out local paper for one a few years, couldn't believe how much they get) and provide a very variable service. I've had good (excellent, in fact), bad and indifferent ones over the years and now, living in France, I don't have one at all. I don't feel I'm missing out particularly. I could never contact them on the 'phone in the end, they were keener on handing me leaflets than talking to me, one was so scared of the consultant she was incapable of doing anything on her own initiative.....

And my last GP (female) never mentioned the cancer at all.....seemed to regard my high BP as my only health concern!!!!!

I know we SHOULD complain, but we don't. Most of us have too much on our plates at the time to make a fuss. We're trying to cope with the diagnosis, treatment, uncertainty, pain, just want to get things over with, couldn't bear a confrontation on top of everything else. And so the machinery grinds on unchanged and those medical staff whose people skills are somewhat lacking are seldom brought to book or made to realise the damaging consequences of their attitudes and procedures.

And, finally, yes, sex! Why don't they spell it out and tell us we are going to be turned into androids? Chemically and/or physically castrated, in fact. Why does everyone pussyfoot around when it comes to this? I've learnt more about this aspect of bc from the posters on this site than anywhere else. By their frankness, they have enabled some meaningful information and tips (mostly unavailable elsewhere) on this subject be given a wider audience.

Best wishes for the op, Sharon.

X to all

S

cherub
Member

Re: I don't feel lucky they "found it"

I guess I must have been very lucky as I was able to talk to my oncologists about the upset things like my total loss of libido had caused. It was through discussing this with them that I got the referral for the menopause specialist and she was happy to see us as a couple. That was about a year ago, but she told me I was in her system for 5 years and just to make another appointment if I was having any more problems. When my libido went, the oncologists told me that neither they nor the surgeons liked women to be left in that situation in the long term. The Consultant oncologist was not prepared to discharge me from her clinic until they had got my loss of libido sorted out and had got me into counselling, so I was very grateful.

I have a libido of sorts again, it's not brilliant, but it is there - I found it very distressing to have no intimacy after more than 20 years of marriage and it was making me panicky. Thankfully, the panic has gone now and things have settled down; I'm also busy with our business and some study which I find is a great diversion (the counselling sessions taught me about diversion tactics and CBT).

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Re: I don't feel lucky they "found it"

Hi all

Welcome newbies!

Snowy - you expressed everything i feel so clearly. I guess that Sharon and most of the rest of us are all saying the same thing. i am frustrated at the lack of answers and the end of a normal sex life, as well as all the other things like hair, beauty, feeling healthy. i wonder how many of us gets to a point where we can feel confident in our bodies again? I miss my breast so much, the feel of it as well as the look of it.

Sharon- don't know what to say to comfort which does not trivialise the true nature of what you are going through but thinking of you and sending love.

I think that the social skills of surgeons are often poor - having worked with many! But I also think BCN's seem to be very over rated. The surgeon who "did" me was happy to leave all the talking to her - think he is poor with women generally but she is not much better. Remember how she always wore low cut tops with a bit of clevage - very insensitive. Now I would not call her if she was the last nurse on earth - she has no answers.

Know what you mean about the BCC stuff on sex - the coy little leaflet and the totally useless publication about intimacy - guess no-one wants to tackle such an emotional subject. I wonder if I will ever have the courage to go on a date again. One woman told me that on the 4th date she told the guy that she had mx and recon. He went to the toilet and did not come back. You may well say she deserved better but in my experience these paragons of male sensitivity who love women despite surgery are either partners or husbands who already have committed (even some of them struggle a lot).

This is life changing and horrible and like snowy i do not know whether the life changing treatment is worth it if life (mine was great before) is going to be like this.

Maz - know what you feel and wish that I had a magic wand.

Sorry - depressing again.

Love

Jane x

mazaroo
Member

Re: I don't feel lucky they "found it"

hi all ...i have been following this thread with great interest ... I am too am really disappointed with my GP ...i have recently had a second and probably last attempt at ld recon ..... whwn I was having trouble and immense pain and tightness with the first recon after I had a fall and fell on my op side ...i went to my GP to have it checked out that all was well ....he said " dnt konw what you have come to me for I have been a doctor for 27 years and I have never seen a breast reconstruction of the nature that you have had done !"
he tried to reassure me that all was well but eventually I ended up having it removed and done all over again three weeks ago... I dont like to bother the bcn at he hosp all the time but I certainly will in future if I have any concerns ...I certainly dont feel lucky to have found it ...not one jot!!! It has changed my life completely it has come between me and my husband and I think that my kids are now relly fed up of the whole thing .... if I get told to move on and forget about it one more time i will lose it .
thanx for letting me rant I got up angry today in pain and tired so soz xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

cherub
Member

Re: I don't feel lucky they "found it"

Just wanted to point out, my Oncologist overruled my GP on the counselling front as she thought he was being ridiculous (where I live it is normal for them to ask the patient's GP for permission to refer to a psychologist). The psychologist I saw had only been with my health authority for 9 months and she said she was finding that GPs in the area had a real problem with their patients going to clinical psychologists. This was totally different to her previous authority, where GPs referred their patients without quibbling.

Last year Stirling University published a study where they shadowed cancer patients and the medical professionals treating them,GPs included. The GPs admitted they often just left the consultants to get on with things relating to treatment and many also admitted they could have been a bit more involved. A Professor from the Beatson Centre in the West of Scotland recently said in an interview that most GP surgeries in Scotland will only have up to 10 cancer patients out of hundreds on their register, so I wouldn't have thought it would be so hard for them to offer sympathy. I was quite shocked by the GPs in my practice as one of the receptionists had BC at the same time as me. After my diagnosis, the first GP I saw said "whoa,stop there, I'm the wrong person as I know nothing about breast cancer". My OH was very angry at that. I also had a letter from a menopause specialist to my GP passed on for filing marked "no further action", yet it clearly stated she was in support of counselling and she also gave details of what to prescribe for menopause symptoms!

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Re: I don't feel lucky they "found it"

Hi All there my speeling goes again