chemo, tamoxifen, sleep, sex and all that jazz......

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. :frowning:

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

Really important thread LIF, ‘Well done you’ for starting it.

Feel quite emotional reading the posts. As women, I believe, that we are taught (not just in the 21c. but historically as well), to just cope with everything as best we can, get on with what life throws at us without a murmur and to feel grateful that we are alive!However I also believe that we have enormous resources at our disposal. We have humour, (see some of the other threads,) we have strength with the support we offer and receive from each other and we get through, very often despite the professionals and specialists working with us, although in the main I would guess most of them do are trying to do a good job.

However I think the fact that many of them are men does impact on our care, despite all the equality and diversity initiatives in the NHS and as LIF evidenced chatting to the prostate cancer men, we are not being given enough information or care about this particular subject.

I am not yet taking tamoxifen, but I will be, I am 8/8 erpr+. I am not yet having chemo or rads, but at least one of them and possibly both are on the way. I have, however since dx on Jan 5th had 2 lots of surgery, 3rd lot coming on Monday. Life is different in the bedroom, either I’m recovering from surgery and too knackered or he is worried that I am in pain etc etc…and so it goes and thats before all the lovely se’s!

How each of us handle it within our relationships is, I suppose, a matter of personal choice, but we really must have more support and information from the professionals.

I will certainly be raising these issues with my onc, and with my bcn and most definitely keeping an eye on this thread.

Wandyx

Well i laughed and cried reading through all the posts, and yes thank you Lif for starting it and lets keep it going for sure. I sound like some sort of gadget, lub crazy woman but do realise the importance too of a cuddle , a hug, to feel a pair of arms wrapped around you, bl**dy flushes and night sweats allowing.

rhian x

I too am worrying that the sex that was raunchy, naughty and spontaneous will be replaced by a ‘mercy sh*g’. The weekend that my lumps were discovered was our last ‘dirty’ weekend. We had positively ‘clanked’ our way down to Dorset with all the ‘toys’ we had with us and I had some V. naughty underwear. One set was unopened and still lies unopened in my drawer, like a memory. I was also an underwear fiend and had over 20 sets so i always wore matching. It seems trivial to being dead but it’s a massive part of me that has died anyway. (sorry, tres maudling).

However, what i am going to try is a full length fishnet catsuit, which has a strategic hole. This way my new Barbie boob, when i get it, won’t be on show as such and so i will hopefully feel confident. I have worn these before and can confirm that they have the desired effect.

x

On a practical note, it might be the time to try some alterative positions, even if for no other reason than to avoid discomfort. Spoons, and variations on the theme, is good, and might be worth trying.

I don’t know about you, but we don’t actually TALK about sex much (I know! And me being such a gobby moo most of the time!) so I find it awkward to bring up the subject in conversation. He’s not the talkative type at the best of times so I’m just going to have to play it by ear.

This isn’t just a subject for heterosexual women either, so those on the lesbian and bisexual thread feel free to join in if you want to. The topic affects you to the same extent as the hetty-bettys who have posted, if not more in fact, so don’t think you’ve been forgotten or ignored. BC affects so much about being WOMAN, whatever your persuasion.

Ladies, sat her in tears reading the comments. So many true things said.
Totally agree with tracy’s 'mercy sh*g" comment, and missing my husbands twinkle like lisax.
Well done to lif for raising this subject, its obviously a big issue, one that obviously needs addressing by the healthcare professionals.
kerry xxx

…so it’s not just me!

OH has been very kind,but like others I feel the “mercy shag” element too keenly and we had such FUN before !!

2 Years ago at 50, I had hysterectomy with ovaries removed at the same time. Didn’t get many symptoms at the time. Been on Femara during dx, still nothing …

Had first real night sweat in hospital after Mx; had a couple since. Nothing mentioned by anyone before Chemo about protection for OH ~ presume they thought we were past it? Had to ask for advice from bcn, and got a job lot of “Yes” sachets for my trouble, that was it.

Have used a few as have noticed dryness, but as Chemo goes on it’s less in demand ~ I feel less and less like it as it’s hard to imagine anyone finding me attractive; he kisses my Mx scar, and tells me it’s still me inside, but I can’t help doubting him, I repluse myself so how can it be? I end up trying to cover my baldy head with my hands as much as I can - and feeling ridiculous…

We do cuddle, and hold hands a lot. What I could do with is a good snog but he won’t oblige because of germs!

HI all, and thanks CM for the lezzie invite, much appreciated - but I at least was on here already!! Thought you hettie women could be delighted that you don’t have the NIGHTMARE of two people having hot flushes in the same bed at the same time -it has to be experienced to be believed!
very bw Nicola

Peachez,
I know what you mean about the germs. I have just just finished chemo, but I was given no info at all.
Am I allowed to mention oral sex on here?? I could not find any info about risks with chemo chemicals, OR risk of infection from passing potential germs from one area of the body to another. It’s not really very relaxing, lying there, wondering if you are risking neutropenic sepsis!
We are constantly being told how many younger women get BC, and also, how 50 is the new 40 (whatever that means), but the coy ‘intimacy’ advice that is available is risible.
Tracey

Why not, TSR. And same for moorcow - wow, hadn’t thought about the double-whammy of night sweats. Though I suppose it’s not so awful if you can coordinate them.

As for risk of infections, I’m of a mind that keeping happy things going on is very important for all-round health.