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chemo, tamoxifen, sleep, sex and all that jazz......
You know, the stuff we are not meant to talk about.....or rather just hint at or talk in hushed tones or put tmi and blush!
Well I want to start a frank discussion here coz I don't thnk we get enough info!
We are processed through the tube of finding it, getting it diagnosed, surgery, chemo, rads, targeted stuff like herceptin and hormone stuff like tamoxifen....we are poked prodded embarassed humiliated amputated rebuilt and shoved out the other end with a wave anbd a handful of leaflets and the numbers to phone if we need help....!
What they don't tell you is once they have put humpty back together again are the enormous hidden consequences lurking.....
So if you were premenopausal before chemo started and got chemopaused in the space of a few weeks the reaction is 'well at least you are alive and at your age .....' or you get referred to the bcc leaflet coping wth menopause....where it gives bu##er all help to be honest....just alludes to 'finding other ways of satsfying your partner etc '
Now I had an enlghtening experience when doing my rads coz i sat with a huge group of men every morning and learnt all sorts re prostate cancer care.... They are asked about erections, they are given lots of help they are encouraged to be sexually active and they are offered treatment for erectile problems.....however when it comes to us women to be frank nobody cares a hoot.....ok they say...you have a little problem with dryness? Penetration a problem? Right ho lets give you a tube of lube to shove up and well everything will be fine and dandy....partner can enjoy himself and you can lie back and think of Englang with your beautifully rebuilt dead boobs and lack of libido....because of course being chemopaused er+ and on tamoxifen you cannot possibly need to enjoy the experience....
And then of course there is the disturbed tamoxifen sleep....not conducive to even thinking of England.....!
Sorry to rant but I bet there are lots of you out there who feel cheated and are just puttng up and shutting up with the oncologists and docs and like me feel very well but cheated of some aspects of life.....the ones they don't mention and the ones that if we were men would be top of the adgenda for recovery and quality of life
Right so what do you all think.....?
Wow- lostinfrance- great thread, huge big thanks for starting it. No one has even mentioned sex at any point during my treatment; I thought i was becos the OH works in the ONc dept and they were too shy to go there so I just didn't bring it up - but maybe its becos lots of the health profession are under the illusion/old myths that we women don't need it/can live without enjoying it.
Me and mh OH talk about it more than we do it, and as I was the one with the bigger libido (which now seems to have vanished with each tamoxifen tablet /chemopaused periods) we look like we are on terminal decline....but as you say, it would be good to have a sex life back - I used to like it!
Way to go lostinfrance, I look forward to hearing what the other lasses have to say, any bright ideas gratefully received. How do you get your libido back? And just to be clear its not in my case to do with my MX as I feel OK with my new body now, not delighted but OK!
Nicola
LIF, would like to add my support. At 41, and with a very good, close relationship, I find this all very upsetting. I have just started tamoxifen, and am waiting, dreading the further changes it will bring.
Have had the horror of diagnosis. Upset of hair loss; tick. Misery of chemo, been there and got the tshirt. Just had a mx; horrendous. Been told not to relax too much, as I am at high risk of recurrence, so we can add fear into the mixture. And of course, I am on lymphodoema watch. I look like a train wreck, and have days when I don't feel that much better.
The thought, that I cannot even now enjoy a sex life is horrendous.
Sorry.
Rant over!
Tracey
hello Lostinfrance, Tracey, Nicola
There was a thread a while back were a few of us spoke openly about this because as you say NO one talks about it with you through treatment, and I am sick of being told 'oh unfortunately its part of the menopause'
I had a great love life before DX ( mhhh I am saying this on a thread were you can see my photo !!!) i contributed to a magazine article about the effects and was told not to be to explicit !!! why broach the subject then not be open about it arrgghhh
Anyhow in my quest to try many things, here are the good things i have come accross
A book called 100 questions and answers about breast cancer, sensuality, sexuality and Intimacy ISBN 978-0-7637-7909-2. Its american 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?)
I am happy to lend it if you want to PM me with address, maybe it could 'go round'.
I am TN so can use topical hormones, again i do know there is a thread where this is discussed and even hormone positive girls can use the products but of course you need to check this out with your medical team. I use Vagifem pessaries. I also have Gynest Cream and you use a pea sizes amount on external areas.
a lub that really seems to work its called PJUR bodyglide and its avaialble on amazon its in a black bottle and is quite silky and smooth, not like KY etc
rhi x
For me the big issue is the 'disturbed tamoxifen sleep' as LIF so ably put it (I also liked the phrase 'beautifully rebuilt dead boobs'). It is treated as a side issue and something that you have to get on with. I haven't had a good night's sleep in over four years now. I've never found it easy to get to sleep at night, and always used to rely on good solid sleep once I had dropped off, right through to my alarm. So now the regular waking throughout the night plus only dozing as the morning approaches leaves me in a permanent state of tiredness in the working week. All I can look forward to is October 2012 when the tamoxifen finishes.
LIF thank you for raising this subject, it is worrying me a lot. As you say it never gets talked about by the medical team and if you bring it up it is just skirted around.
At my diagnosis I was told I would be going on tamoxifen after surgery, chemo & rads. I'm 50 and pre-menopausal, and always imagined I would deal with the symptoms of the menopause as they arrived, with the help of HRT. To have more or less instant menopause thrown at me with little hope of real relief of the symptoms was absolutely devastating! When I asked what to expect I was told matter of factly - hot flushes, night sweats, vaginal dryness, loss of libido etc etc. What I really meant was what can I expect to receive to help with these symptoms? But I just couldn't get the words out, it was obviously something we are supposed to put up with. Of course nobody over 50 does it anyway, so what's the problem!
Any tips or advice we can share would be really useful. My OH and I have an active sex life and I'm not going to give up on it without a fight.
Roadrunner I deeply sympathise with your sleep problems, I have suffered with frequent waking in the night for several years already, and on top of everything else if Tamoxifen makes that worse I will be at my wits end!
Liz x
I had just begun to think about perhaps investigating menopause when I was diagnosed, so like you I'm now facing the "wham, bam, have a menopause to beat all menopauses" thing, and I was less than impressed, and very alarmed at the thought that my moist bits would dry up and shrivel within a fortnight. They didn't, by the way, in case anyone has read this, but then I've only has WLE and chemo so far and Herceptin and Tamoxifen and rads haven't started yet. I don't have any suggestions unfortunately as I've been deprived for several weeks because of OH's heart op, but I have resorted to a little DIY occasionally as we don't live together, and he's less bothered by frequency of sex than I normally am anyhow. Maybe this will put us on the same level? Dunno. I suppose it might fix my frustrations. Boo.
I'm not sure about the baldy head thing, that will be a big deal for me, and I will probably mourn the passing of my care-free sex life as I will now be seriously bothered about his perceptions of me, and perhaps more significantly of my own perceptions of me too. Oh dear, I shouldn't type on threads like this when other people are in the room, they look a bit alarmed to see my eyes leaking. But it IS a big deal and we DO need to bring the subject out from under the covers, as it were. Well done LIF, thank you.
re DIY in the book i mentioned it talks about DIY being important as this stimulates the blood flow to that area . Doesn't need to be actual DIY but stimulation rather than penetration ( mmhhh its at this point I think i need to change my profile piccie) trouble is what is never mentioned is the skin becomes very thin and even stimulation can be sore (which is why i found and use the Gynest cream) another little gadget I have come accross is called The Lelo Elise its from a site called Exclusively Eve. its very effective and gentle. not some great stonking rubber jobby with nobbs and bells on. Oh lord did I just type that!!!
r xx
Never got on with "gadgets", but horses for courses I suppose.
NO, I didn't mean it THAT way!!!
Rhian - thanks, that is a useful start. And I agree with CM and Liz, i was presuming menopause would be some time in the future, with a gradual introduction and yes, HRT, as there is no history of BC..lol.
'It's day 3 in the Tamoxifen house....'
How does the DIY work with the lack of libido??Will I have to make myself a romantic meal? Or perhaps just look hopeful (and a little pathetic), and whisper, 'how about a quickie....?'
Tee hee!
Tracey
X
Tracey
That really made me smile ha ha ha
rhian x
I too am worried about losing my 'urges' (Now doesn't that have a nice ring about it - i mean ring as in the sound - naughty) at present I haven't - I'm on FEC4, although the tiredness tends to beat me.
obviously i was really worried about my appearance without hair and how it would affect me and OH but it hasn't. The next biggie (really biggie) is the mx. How on earth can i feel sexy with a bit missing? not any old bit but one of 'those' bits. My OH is lovely and says reassuirng things but I don't know how it will knock me.
As for the early menopause - what is it with BC that is sooo determined to strip you of all 'womanliness'? (made up word)
However, my OH is 9 years older than me so in theory if we were the same age i could be having menopause anyway so he's just gor a 50yr old who looks younger! As you can see from my profile!
Thank you lovely ladies for this thread, especially LiF.
I parted company with ex just as I got diagnosed and it's been an interesting journey in the self-confidence stakes since then. Being honest, having just turned 50, I had more libido than he did (at 40) and I really don't want to give up sex for the rest of my life.
So, I guess it's diy for the foreseeable future to keep things in working order, as I got flung into the menopause along with everyone else.
Yes, I'm worried about meeting someone and having to explain away yet more scars, but hoping they have some of their own so we can compare stitching!
Thank you once again for the information and sorry I, so far, can't contribute any more.
Love
Helen
Hello
Tomorrow I go to see gyny consultant . I've a marina coil and have had 42day periods so sex is a distant memory. OH coming with me because I can't face being told that I will be going through menapause soon so put up with it. Tamoxifen has given me all the negatives of menopause and none of the pluses.
Happy days
Chinook
Thanks lostinfrance for raising the subject, and couldn't agree with you more. The medical profession all seem to take the view that it's accepted that we'll go into an overnight menopause, but there's no real help offered to cope with that. The emphasis is on vaginal dryness, as if that's the only thing that matters, but no mention of us wanting to enjoy a sex life! It was very interesting to read about how much better the men with prostate cancer are treated - surely nothing to do with the fact that most of the consultants are men?!
To me, the best way of feeling that I'm beating the BC monster is to recover as much of my normal life as possible, which includes a decent night's sleep and a sex life. I've tried so many different drugs to cope with the poor sleep and haven't found a solution yet, but I'm stil trying.
I had a Mirena coil which I had to have removed because of the BC and replaced it with a conventional coil. One of the known "drawbacks" of the conventional coil is that it can cause a bit of a discharge, but as far as I'm concerned it's a bonus since it creates moisture - yippee! So all is not lost.
Sarah x
I'm another divorcee who was just looking forward to maybe moving on with life.
Mirena coil bit the dust, I am e+ p+ 8/8 and surgeon and onc both said get rid of it. Just started tamoxifen and dreading what it may do. I said what if I find the SEs unbearable and got a lecture about the risks of contralateral bc. So, early menopause it is... As I only get an extra 1% better prognosis taking tamoxifen, I could decide not to take it if it is too horrific. Don't know as yet though whether it will have those SEs. Must say my mother and mother-in-law both took tamoxifen for years and got on with their lives in fulfilling relationships for years.
Not something which makes me feel happy but all part of the sh*t which bc throws at us. When I mentioned concern at what hormone therapy might do to my sex life (assuming I ever get one again) the onc looked at me in what seemed to me to be a "fat chance" kind of way... x
Well guys thnk we have hit a nail on the head here.....thanks for your replies and keep em coming. I am determined to speak to my onc on ths subject as I think we are getting short changed. I know many folks have a lovely happy relatonship without being physical but for those both men and women who value ths side of their relationship I think it should be taken more seriously, after all what is the point of being disease free but with a very poor quality of life like some people have?
LIF, my onc seemed like he thought it was a trivial point but my BCN was extremely helpful and sympathetic. Maybe seeing it from a woman's point of view compared with my male onc? If anyone struggles with their onc, maybe a chat with their BCN might help... x
Scaco, looking as you do in that photo I think you're going to need more than regained urges! lolol
All joking aside- I really wouldn't worry. Just make sure you encourage closeness, cuddles kisses etc . Putting pressure on yourself or on both of you could lead to more problems in the long run. Just keep talking and find out how your OH feels,he may be afraid of upsetting you.
While you're feeling unwell because of chemo etc. may not be a good idea just as being worried or stressed just make sure there are plenty of cuddles and it will come back.
If you need someone to talk about it with I would def consult BC nurse,
Margaret.
OH GOD.... no sex as well......!!
Must admit its not been top of the agenda for me for a while, actually it was pretty non existent before the BC.. rarely seeing OH, working ridiculous hours self employed and trying to raise 2 children almost single handed, SEX?? whats that?
But i was kind of hoping, and still am hoping that i will be a new me at the end of all this, and that includes returning to a fulfilling sex life, (Planning to stop with the silly 14 hour days anyway so should have more energy?)
If i have to resort to tubes of lubes then so be it i guess...
I'm 45 with no children and it did make me laugh when my oncologist told me that I had to precautions against getting pregnant once chemo finished! I've been in the spare bedroom since diagnosis in September 10 and the hot flushes are killing me. Even my faithful dog had given up sleeping with me and departed to his basket!
Thanks for raising this - I was planning to have a talk with my ONC on this as well as sex has been very absent for all the reasons mentioned. I am just about coming to terms with my loss of boob but still feel very self concious despite all the reassurance from my OH. I feel guilty enough that I have the ****ing cancer in the first place without then adding the fact that I just don;t want sex as well so for me it is a problem I want to try to deal with in some way once the chemo is over -
I am TN so no tamoxifen & I am soooo hoping my periods return & I can just have a "normal" menopause when I was menat to but I know realistically the chances are slim at 45.
As ever with the medical profession they just skim over all this & expect you to be just grateful to survive I think
Thanks for bringing this up lif:)
From my point of view i have found that when sex has been spoken about by onc/chemo nurse/bcn it has been more about me not getting pregnant than anything else. It was halfway through chemo that it was mentioned in hushed tones that husband needed to use protection because the chemo could pass into my bodily fluids, no one mentioned it before-it wasnt in any of the leaflets or side effects bumpf they gave me.
We had a stonking sex life pre bc, its now dwindled to very little, and we have lost the closeness in our relationship as a result. I feel unattractive, and have no confidence. The womanliness that gave me confidence before is responsible for making me ill.
kerry xx
Kerry thank you for your post, it really touched me.
I agree with the total lack of information re using condoms, it has never been mentioned to me either - I heard about this somewhere on this forum, and I have gone though all the leaflets I have been given and there is nothing about it.
I had my first chemo 4 days ago and my OH is being wonderfully supportive, he reassures me constantly that my surgery and inevitable hair loss make no difference to him, but I still feel my confidence draining daily. No sex yet, he is exhausted from the strain of everything we have gone through in the last 2 months, and I am wide awake at 4am in the spare room so that he can get some sleep.
You totally summed up how I feel - "The womanliness that gave me confidence before is responsible for making me ill"
Liz x
On top of chemo ickyness, I've also got OH's heart op and accompanying side-effects to deal with, so not a clue when we'll even get the chance to have a go. With all the rubbish stuff that went on in my family just before his heart op I didn't even get the chance for a fairwell shag. Boo.
But I did get to spend the night in his place for a change last night, and although dex and a need to pee woke me up lots, it was lovely to be able roll over and have a warm body beside me, and have him roll over and give me a hug too, rather than just have the company of the cat that sleeps in my bed at home. (I love my cat dearly, but it's just not the same...)
Physical contact has always been very important to me. I feel very sad that not only have I not been able to have sex recently but that I might not want to, and that is SO not like me, normally he has to fight me off! I'm a very "huggy" sort of person and often have cuddles with my kids - even persuaded my massive son to hug his bald mummy the other day - and for me sex with my partner, or even just intimate contact without full rumpy-pumpy, is a very important extension of holding hands and fully dressed, standing-up hugs.
Morning,
Thought I'd add my thoughts. My Onc team have given me hardly any info about the menopause. I only know that the chemo is likely to bring it on but not what to expect. Well, I know I'll get dry bits aftet reading this thread but I am totally in the dark on what to expect. I have been having some seriuosly bad night sweats so bad that I have had to dry myself with a towel so I suppose the big M is on it's way. Does it happen like a big bang? My Onc team's concern was preganancy and when I asked about the possibility of chemo drugs passing through bodily fluids as I had read it a macmillan or bcc leaflet, they said this was not true and ok to have sex.
I will be going to one of the younger womens forums and there is a break out group to discuss relationships and intimacy so other than this thead, that's about it with the support available.
What I really miss is the spark in my OH's eye that I haven't seen for a while.
We're going away tonight to spend a night in a hotel (we don't live together for many reasons). It will be the first time we have slept in the same bed with me having a bald head. I have touched on the subject and joked about how he might feel waking up and seeing my shining bonce but really I am so frightened that my baldness will put him off.
This is SO good to be able to talk about this.
My onc has been fantastic about discussing the options in terms of Tamoxifen, or the alternatives of injections to drive me into a full menopause, and perhaps having my ovaries out, if that is what I decided. But Tamoxifen seems very much the 'easy' option as far as he is concerned. I am 7/8 ER as well as her2+++ so I will benefit from the tamoxifen - and it is early days, so I am keeping an open my mind. There really won't be much of a choice - hot sweats, instead of hot and sweaty sex.....
SCACO- the mx was a huge hurdle for me too. When you are already feeling less than womanly, it seemed insurmountable. I think it was for my husband too. We both wanted to resume things as soon as possible, just to prove that it was 'ok,' I think. But what has happened to wanton abandon? To just relaxing, enjoying sex for sake of sex? To not 'making love,' but being a bit raunchy? I cannot lose sight of the mx for a second, and what things were like before. It almost feels like a bit of a 'mercy s**g.' I cannot understand how he can want me, when I look at the image I see in front of the mirror.
Tracey
Ditto Liz... That sentence of Kerrys says it all i think.
So hard to find anything at the moment that feels remotely attractive about oneself..
Last night there was a clip of J LO on tv, and i said," she's so beautiful"... my 8 yr old piped up "Yes Mummy just like you used to be".... Not meant unkindly i know, just from a little boys point of view.
Maybe i was too vain before? But my body and the way i look is so important to me, and yes its the biggest confidence boost when you feel attractive.. i now walk around with my bald head, pasty skin that hasn't seen the sun for way too long, my boobs that are 2 sizes different to each other, gone are the figure hugging clothes, replaced by my OH's old sweaters and shirts... dreading the summer and minimal clothing... but apparently we're not supposed to feel sorry for ourselves about the way we look, just glad to be here... and i am please don't get me wrong.
Before BC i had, still have actually a drawer full of beautiful underwear, it was my one indulgence, not shoes or bags... i must have about £400 worth of bras,i used to treat myself every few months to a new one, pinks and creams, black ones, lacey ones... oh how i loved them and how i felt good in them. and sexy! . Now i am resigned to whatever i can find in my size without a wire in...not a massive choice.. I shall ebay all the old ones unless anyone is a size 30FF/G hasn't had a MX and wants a shed load of barely worn bras??!! LOL
Dont know if i feel like crying or laughing after reading all the above......
Will defo go to meet the onc with a list of sex questions,
One question regarding the plastic things with bumps and bells on, should I carry one with me at all times just in case i actually get the urge?
Thank you all for the insight x
Morning everyone - I really don't know whether to laugh or cry either - but its so good that we have this space to share thoughts and despair in. TSR - I am so with you on the loss of raunchy - just don't feel that way anymore, but maybe it will come back. SarahBeara - I read somewhere that Oxfam take in good bras for sending to women in Africa who may not be able to afford them - like on those comic relief films - perhaps some of your lovely bras could go there? I finally got rid of mine about a week ago - to Oxfam- a year since mx. Triaction sports bras are doing a great job but its not the same. I will invest in some nice Royce when I've lost some of my weight.
big hugs to us all, Nicola
I am really so so moved by some of the comments here so eloquently put....Lets keep talkng and we can I believe influence how we are dealt wth by the medics etc.
I am a person who quite honestly finds talking about all this quite difficult as its intimate stuff but I am getting quite radical in my old age....and will not put up with losing a fantastic relationship with my husband as well as all the other crap.
Thanks everyone....in writing on this thread we are helping so many others who just read and don't post to take on ths subject and get some real help
xx