Thanks for all the support girls. Scaco you can always make me crack a smile!
We had a chat this morning and a gentle cuddle, been for a stroll in the sunshine too. He's reassured me that he still fancies/loves me, but no 'action' as such - is it just me or do others find sometimes you just need that real connection and that sometimes only a good bonk does it??
Going to accept that we're just out of tune at the mo. Ho Hum.
Thanks again, am out of the cupboard at least. xxxxxx
I think I may have confused weekend pants, with weekend rants. Have half a dozen kids in the house at the moment, I am counting the hours until Monday morning. Oh, no , wait, it's the Easter holidays.....
A house full of kids is always a great contraceptive, not to mention libido crusher. I wonder what else tamoxifen can add to that? Extinguish the last few glowing embers perhaps....
Sophie, you nearly made me spill my tea! I count myself very lucky that my OH still fancies me, scars and all - the chances of finding someone else for a quickie while he was away would be extremely small! Not that I'd want to, but you know what I mean.
Oh, I need more coffee, or glasses because I completely read that last post wrong... more like: Fingers crossed that I'm in with a chance today with OH away for a week on business...
Sorry cheshirecheese!!!! I was so intrigued... but v.v. glad that it is your OH back home for the weekend.. good luck, hope the weekend knickers don't stay in situ for very long....
Thanks to SCACO's comment about a "cock to rock" gauge I Googled it - and blimey what an interesting set of results. I didn't know such things existed outside of men's mags! But it gave me a giggle.
Now got my fingers crossed that I'm in with a chance today, with OH returning from a week away on business. Weekend knickers on!
Was going to say 'bum' but don't think this is appropriate.
I don't think for one minute you will look like a panto dame or that he didn't want you, they're just not that good with understanding a woman! Only having the trimmed version of the story it's difficult to know what to say.
I can only base it on my OH - i know he loves me but sometimes he doesn't say or do what i need at that precise moment, when he realises this he's mortified with himself but i can't really blame him because:
1 - My moods change quicker than the weather (and without a handy forecast).
2 - he really doesn't know how a woman thinks (like i don't get walking around a field trying to push golf balls down holes and other 'manly' things).
3 - he doesn't have cancer or chemo.
4 - he doesn't have boobs and so no concept of what is being lost mentally.
My advice would be to not let it fester. If this was the first time you'd 'made a move' in a while he probably wasn't expecting it - or was maybe too scared to make his own move in case he'd read the signs wrong and didn't want to push his luck (so to speak)
You know you're OH so you'll know which one fits. There's a 'Cock to Rock' gauge that was mentioned on the Woods thread I think, maybe he tipped towards the Cock end but he probably has no idea.
Now then - what are you still doing reading this?? Get those knickers back on and give him a another go!
Don't know what to say to make you feel better, cos you feel how you feel at the mo. But I know one thing for sure, you will not be looking like that panto dame!
Sometimes we just get our timings off, he feels like it, you don't, you feel like it, he doesn't....Its life. BC or no BC.
Maybe just try telling him how vulnerable you feel at the mo and how his wanting the pint rather than you really upset you, being a bloke he probably doesn't even realise that it may have been a big deal for you, Saturday knickers and all!!
Do not hide in that cupboard!!
Love and (((Hugs)))
Oh Peachez, how horrible. You don't give the sequence of events, so I can't offer any possible explanations. The only thing I can say is, sometimes they just need some 'cancer free' time. So do we, of course, but it is harder for us!! Perhaps he is better today, for a relaxing, stess-free, night with the boys? Maybe you could talk about it and tell him how you feel?
If not , feel free to 'vent' on here. We will make a virtual wax effigy of him, and stick pins in painful places......
Well, managed to summon up some enthusiasum yesterday, Saturday knickers and all.... Long story short: turns out OH would rather have three pints and a packet of crisps down the pub...
Part of me can't blame him, a bald, bloated, lopsided panto dame of a wife to look at or the pretty young bar maid with her cleveage on show?...
Feel like hiding in a cupboard for the rest of my natural. Really upset.
You're such a feisty girl, can't bear to think of you shedding a tear, but know just what you mean.
OH and me had a little loving before this last lot of surgery and although I haven't yet got the baldness to contend with my boob is not very boob shaped anymore and I just felt v tearful and unattractive and sad.
Think we just have to accept there will be times like that and then no doubt there WILL be other laughter filled, raunchy, fun moments, even if you are both laughing at the absurdity of this ridiculous disease!
Haven't yet started on Tamoxifen but have had two chemo so am as bald as a coot. And I have to say I almost prayed that OH wouldn't open his eyes and look at me this morning as I was "checking that things were working" because of how I feel about my appearance.
It was lovely, and yes, both our bits worked (he's recently had heart surgery so you've got to check these things) but I still felt not particularly good about myself and admit to having a few tears in the pillow. How very silly of me.
Just a reminder at the start of this thread i mentioned a book called ''100 questions and answers about breast cancer, sensuality, sexuality and Intimacy ISBN 978-0-7637-7909-2''. Its an american publication but has some great info, i found some great facts in this book. One is if you stop having any sexual intimacy because of the soreness etc, you stop blood flow to that area , which in turn causes you to be sore when you do and in turn you go round and round in circles get increasing frustrated and sore( does that make sense?)its aimed at same sex couples and mixed couples
been on tamoxifen for 2 years, 3 weeks ago started to get numb feet and legs while sitting also whilst walking. Does anyone else have these symptoms, beginning to worry me now.
yeh its like that aint it - like another hurdle - but once you are over it once.......!! ANd if not, if you really don;t fancy it, then thats got to be OK too and a solution found to all the issues that brings..
Nicola.. now I feel guilty because someone out there is actually having sex!!! My poor OH, patted me on the bum last night, and said 'when you're feeling better'... which makes it feel like yet another hurdle to get past... damn damn damn, I just want to have the enthusiasm back!!!!
(Pleased for you, tho, honest
Back to sex - we had some and its a good thing..reinvigorated me for helping sort some info for everyone who needs to feel they get this aspect of their identity back, and get this connection with their other half/sex partner back, and I think this thread is really helping sort out what could be in such an information source. Hope BCC take up the challenge with our help.
I agree with both CM and Trip.
The medics are trying to encompass all in one booklet and really are only covering the technicalities of 'how to go about it' rather than 'how to even get to go about it', which i would say affects all of us, regardless of whether we are straight or gay.
I agree with CM regarding the generalisation of the booklets, in as much as they don't include every aspect of modern society but this is the case for many of us - even hetties. I hated watching children's programmes with my kids when me and their Dad split up because we didn't have the 'happy mum+dad' family, we weren't/aren't that norm. I wouldn't expect anyone who hasn't been in that situation to start shouting about it because unless it's you it doesn't register.
I have to say that i am one of those who have added their thoughts and wishes to the thread mentioned and find it quite insulting for that to be seen as glib because i'm not shouting about lesbian rights on this thread. I offer my support to all that are in this rubbish situation: regardless of who they are or how they live their lives.
I looked through the Aussie one, and felt that at least it did confront the issue that women might just want a sex life during/after cancer.. but that was pretty much it. Interspersed with pics that might have been photocopied from the Joy of Sex, without actually explaining why any particular position might be better than another...
Norberte, I'm sorry for your anguish and anger, and I do think you have valid points - but don't scream against those of us who would truly wish to support you. So we don't 'get it'.. apologies for being hetero women who are just doing our best. You know what? The medical profession doesn't get our needs either.. as is evidenced by this thread.
It seems to be that the devil is always in the details.. and what I need most from any sort of medical literature is advice on how to overcome/treat/lessen any medical symptoms that may occur through premature menopause or treatment.. such as vaginal atrophy, complete lack of desire, difficulty with orgasm, etc etc... and I really don't see that that is any different to information that a lesbian/bisexual woman would require. I don't need the NHS to tell me about different sexual positions.. there are plenty of publications that abound for this, for those lacking confidence or imagination, and I'm sure that lesbian couples are just as capable of figuring out what does and doesn't feel good as others.
When it comes to emotional anguish/differing sex drives etc.. again, what difference does it make what sex the partners are? Or whether they are same sex or hetero? Advice for this is important and pertinent to anyone going through it.
The australian booklet may not be perfect, and has evidently distressed you - but 'at least' it acknowledges the gay community - which is a step ahead of much of the literature here. Possibly the best way forward is for far more individualised booklets - rather than one that trys to be all encompassing, but really doesn't manage it. I don't particularly need to know about erectile problems, for example....
Just please, Norberte.. don't damn us for not understanding. I have a pretty tough time understanding myself at the moment, as it is. And for anyone else, if you can find something good and encouraging in anything you read - then three bloody cheers.. because there's little enough advice out there!!
I’ve passed your comments on to Melanie but as she works part-time and isn’t around at the moment, I thought I'd respond in the meantime. I’m sure Melanie would acknowledge the limitations of these booklets, not least in the lack of references to LGBT people, relationships and sex. I’m sorry we didn’t mention these limitations when we posted the links.
As many of you have found, finding any information about breast cancer and sexuality is difficult, let alone anything that's actually inclusive. It’s certainly true that much more work needs to be done in this area (as in so many other areas) to make sure that information and services are truly inclusive. If anyone does come across any resources on this topic that are more inclusive, please do point us in their direction.
with best wishes
Norberte, I think you have a right to be cross, but please be cross in the right direction. I didn't say the aussie booklet was "really really really good" but it's a darn sight better than anything else I've seen (but that may be just because everything else is pretty useless). It's aimed at patients who have lots of different cancer effects to deal with, not just breast cancer, and at male and female patients, who I'm sure we can all acknowledge will have differing sexual needs. Oh, and it's also aimed at partners, friends and family. So I suppose "aimed" is a pretty poor choice of word on my part, seeing as it's taking a more blunderbuss approach than a targetted one and trying to hit everything. Yes, it misses detail for LBGT cancer sufferers, but it also misses detail for different racial or religious groups which may have different attitudes towards sex and sexuality - I am not qualified to make knowledgeable comment as I'm just a boring, ordinary hetty-betty who has led a very narrow life so far, so I'm sorry for not understanding in depth, I just haven't had the experience that would be needed for me to understand the way you do.
The point I tried to make was that while the aussie booklet has tried to give some practical pointers, the bigger problem is the medical professionals' attitude to women whose sexuality is affected by cancer, because it's just not seen as something that even needs to be discussed. And that group most certainly includes EVERY woman, not just straight women. You have a much more difficult time than us HBs, as you have often said, but that's for the very reason that sexuality is just not recognised. For anyone. So when you aren't run-of-the-mill-part-of-the-majority, you're treated like a alien. Please don't think that us poor HB goldfish don't acknowledge all the extra problems you have every day in being acknowledged and accepted, but we simply don't understand the difficulties as acutely as you do, because we haven't been subjected to them. But we can empathise as far as our limited understanding allows, because as women we have experienced a small degree of the same attitudes.
How would you improve the booklets, or would you just chuck them in the bin? Would you integrate lgbt pics and tips with heterosexual stuff or would you have sub-sections in the male and female sections? Would you include tips on how to talk to those in the medical profession? Would you create something for the medical profession to read so they can get an idea of what lgbt needs are? How could you try to ensure that they even get read? (It's usually the people who already know it all that need the most educating!)
As for this being a world where lgbt people are mostly invisible, I completely agree. But I don't know what I can do about that. There is almost always going to be a "default" position in just about anything. (The default is that the boss is male. The default is that people live in couples. And sometimes with children. The default is that people are heterosexual.) How should things that are NOT the default be dealt with?
Sorry, this has gone a bit off the topic but it’s something that does need to be discussed, I just don’t know where’s the best place.
I haven't yet got round to looking at the Birmingham one so I can't make any comment on it at all, so my comments are solely about the aussie booklet.
I have had a look through those info booklets. I am straight, but do not feel that a lot of what is written is directly relevant to me either. How can it be when it is written for both sexes, and at patients, relatives, and concern many different forms of cancer and it's treatments? So I don't think you will be the only one to feel that it doesn't really seem relevant. I would be interested though, to see whether the further reading that is suggested in the Birmingham one is purely hetro based. Do you have any idea?
I have yet to read ANY info booklet, and I'm afraid I include all the BCC literature in this, that I feel speaks directly to me. However, in some cases, they have provided a starting point for me to find out more - bringing me here for example.
I am not for one minute belittling your feelings of being 'marginalized,' just saying that we are ALL in a terribly vulnerable place at the moment - some with more to cope with than others, but none who are trouble free. I hope we can all still pull together, and carry on giving each other support and friendship,
Well done Australia!!! That is exactly what is needed....Thanks Melanie i think that will help a lot of people!
Choccie you are right re the medics....BCC please kick em a bit on our behalf .....please
You've got to love the Aussies, that booklet in Melanie's link is just so straightforward and down to earth. Bless 'em!
I think a more difficult problem to solve in the longer term is the attitude of medical professionals to women whose sexuality is affected by cancer. It does seem as if it's just not something that even deserves to be mentioned for all sorts of reasons, so Melanie and the rest of the BCC team may be able to have some influence in that respect, while the rest of us get on with trying to find a way to keep or rediscover our own personal ways of dealing with cancer and sex.
Parents evening so well down wine bottle so excuse spellings and madness.
I've been on prozac and tamoxifen for five years and no one has ever said its not a good idea!!!
As for numbing bits I had seratonin at first but orgasms were impossible. Now on prozac and can do DIY and electric ones. GP treated patient with premature ejaculation with seratonin after I went back and complained with great results.
Maybe all oncologists ,GPs and BCN should read this forum.
On a lighter note today, at rads planning I had to sign a form stating that I wasn't pregnant... gave me the first out loud belly laugh of the day - as I pointed out to the rads techs that, immaculate conception aside, no chance of pregnancy when not having sex.....
One word of caution, it can take AGES to get counselling from Relate, up to a year in some areas, which in my view is far too long if a relationship is already in trouble.
Hi Melinda, and thanks for jumping in with us on this one. I'll be taking a good long look at the links you've given, once I've woken up.
Another well done for BCC in appreciating the impact of this disease on so many parts of our life, and in having someone like you who's interested in doing something to help.
I’ve been following this thread with interest, especially as its “my area” of work. (I’m currently working on a project for Breast Cancer Care looking at body image and sexuality). There are a couple of booklets that you might find useful. They aren’t breast cancer specific, but they are more explicit than Breast Cancer Care’s information. I’ve attached the links here:
One is from the Cancer Council Victoria (Australia) and the other is from NHS Pan-Birmingham Network.
If you wanted further support on this issue, a psychosexual therapist would be able to support you in dealing with your sexual relationships and symptoms. You may be able to access one via a Relate centre, if there is one near you. Some Relate centres have links with Macmillan (e.g. Manchester and Cheshire), so it might even be free, but in most cases there would be a charge.
I hope that helps
Breast Cancer Care
Well done CM and LIF
CM thanks so much for that really interesting link and for championing this cause with the BCC mods.
Just received a PM from BCC mods after I asked them to have a think about this thread. I'm sure we'll get response on this very important subject shortly, so thank you BCC for dealing with us as women, not just as "patients" or "sufferers" or "victims".
Unfortunately I love hot food, wine etc. Got the chillo pillow, cotton bed wear, window open etc. The only thing I haven't tried is jumping into a local pond or pool! I am thinking of trying a tennis sweatband as I woke up early hours of the morning blinded by the perspiration which isn't getting trapped by the eyebrows I haven't got!
From what I've read on these forums it's actually the opposite problem - the loss of elasticity means the vagina wall doesn't stretch as it used to and therefore intercourse can become very painful.
Just read through the link on breast cancer and sexuality.... it seesm that not only is it all going to dry up but also go saggy as well??!! ( loss of elasticity of vagina wall) apparently ... can't wait for that one ......
Following on from CM's comment about Prozac, the other thing to be aware of with anti-depressants are that they have a numbing effect on the nerves. So if you've been prescribed a-d's to help deal with the hot flushes and night sweats, they can also have the unwanted side effect of numbing bits you don't want numbed. When I asked my GP about this she confirmed that that's the way these drugs work and they will all have that effect to some extent. I had been taking amitriptyline but came off it for that reason - orgasm became impossible because I was so numbed. It's a shame because amitripyline was helping me tremendously with the bad sleep patterns since it has a sedative effect, but I've taken the view that I'd rather put up with some lost sleep than a lost sex life.
great idea nicola, there have been guides on going through chemo, etc etc why not sex , this thread proves there is the 'will' to be sexually active after BC and its treatments.
Yeh, just wondering could we write a guide, like the confident choice one about prosthesis and bras, but on sex, for hetties, lesbians, DIY etc...what do you think BCC?
Nottsgal, No. 10 in the top tips also mentions Prozac, which of course is to be avoided if on Tamoxifen because of interactions. Who on earth wrote those tips?!
Thanks for that link it made fascinating reading and had me near to tears. Although it was quite an old article it seems that sadly nothing has changed.
Loved the suggestion of standing in a swimming pool - now where do I find the one on my floor at work?
Hi not sure if any of you have seen this one :
re hot flashes, this is so useful (not!) suggestion number 1 is my favourite: http://breastcancer.about.com/od/lifeduringtreatment/tp/hot_flashes.htm
I've just been wandering around (wouldn't call it as focussed as "browsing") and came across this.
Quite an old piece but might be worth a read.
I totally agree with all BC treatments' effects in that "department" ! I've had something like a quadruple "whammy" on my libido in the last 11 years - firstly - started effexor in 2000 - for delayed post-natal stress and anxiety (anti-dep., also known as "No-sex-or" among Drs, apparently!). BC treatment and tamoxifen in 2008. Hysterectomy following prolapse - 2009. Chemo again - 2010. Rads to only bit left - ovaries - late 2010. Then, to cap it all - femara started Feb 2011 as I'm now menopausal. What sex life? - absolutely zilch! There was a woman on the US site who started taking Viagra after libido-loss, but I'm not sure about it. Hope things improve!?
All the best, Sarahx
I've "reported" this thread to bring it to the attention of BCC mods, in case they hadn't spotted it, so with luck and a following wind we may get some input from the lovely BCC people. It's such an important part of our existence, if our sex lives go out the window it's no wonder so many BC sufferers get depressed!
LOL! Well my OH is like a walking radiator so under a duvet he positively glows....so since I don't suffer like you but do get the hot then cold then hot problem I find sleeping under cotton...not polyester or any other man made fibres helps enormously. I sleep in my birthday suit, always have done and that helps or I know if I'm cold and go and find something a simple loose 100% cotton teeshirt is good. Also banish any form of heating in bedrooms and open a window a crack even in really cold weather, and wide open if warm....works for us!
Has anyone found anything that helps with the dreadful night flushes? I've got a chillo pillow and am taking sage capsules on the advice of one of the more enlightened medics. I am confined to the spare bedroom as I am near combustible in terms of heat and feel like I'm swimming with the perspiration. I'm even heating the chillo up! I'm sort of getting my mojo back post chemo but sharing a bed is out of the question at the moment! Lou x
That comment of yours about the over 40s particularly struck a chord with me because I'm convinced that a significant cause for us not being offered any practical advice is that the medical professionals believe that "old people" don't (or shouldn't) "do it"! Typical arrogance of the younger ones, who think we're all old fossils! I'm over 50 and I'm damned if I'm going to have my love life relegated to the "doesn't matter" file! And how on earth do the over 60s get treated by the medical people? I dread to think what response they get!
That it Sarah....there is NO information on what to do or where to get proper help....perhaps the mods on here could pass this info on to BCC....and they could actually talk to real women about this as its so very important. I know the section for younger women...i.e those diagnosed under 40ish discuss this and put forward solutions, however those of us over 40 are still amazingly brushed under the carpet....because of course older people just don't 'do it'
The fact that older women are almost topping the std stats along with teens prove that 'yes they do'!!!
So come on BCC.....we need your advocacy.....what d'ya think???
Fascinating feedback from everyone and thanks to LiF for raising this topic. But the biggest question still there for me is why don't we get more info or advice on what to do to help with these problems? It seems that we all get told "well of course you'll get hot flushes, night sweats and a dry vagina" but the only help offered is some lubrication so that our men can still "get what they want", but we're not expected to want a love life, so it shouldn't matter to us. I thought that attitude had died out 30 or 40 years ago, but it appears not!
Like most of the others who've posted here, my love life with my OH is very important to me, it's part of the glue that holds us together, and if something is damaging it I want to know what I can do to put it right.