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

Public Archive
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Well done girls…I think we are lifting the veil/carpet that covers these subjects!

I want to add…I am taking huge doses of evening primrose oil…makes the flushes and sweats bit a lot more tolerable! I am also about to try vit E capsules but not swallowing them…insertion as lube is supposed to really help and condition the skin and make it strong and supple…worth a go!
Also I have researched and am having a go with natural progesterone cream…I am er+ but pr - so have decided what the hell and am going to talk to onc about it…
I would never of course advise any of you to do what I do…but as far as I’m concerned its MY body and MY life!

Moorcow…I hadnt thought of double night sweats! and CM thanks for mentioning its open to everyone this thread…blokes as well as I have no idea how bc treatment affects them…can we find out?..Any males with bc please let us know your experiences.

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LIF, yes, I had forgotten about evening primrose - did it make you feel at all sick? I seem to remember from days of old that it did me. I will try again. And on vitE, I can well believe it. With my third baby, I used the oil neat, on my tummy, by breaking the capsule open, and rubbing it in. She was the only one that did not produce any stretch marks…
Tracey
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LiF - thank you for starting this thread. And to all of you who have posted so honestly, and with such heartfelt words - thank you so much for sharing.

I have absolutely no libido at all. It’s gone, run away, possibly incinerated with my left boob, who knows. I think since chemo started just before Christmas, me and OH have maybe had sex three times. And it was just sex/mercy shag… you can’t call it making love when one half of the partnership would honestly rather be asleep. My OH’s libido has always been higher than mine - but we’ve got through that over the years, but I do worry so much about mine dropping to zero. I can see the frustration on his face every now and again, and know he’s trying so hard to be patient… but how long will that last? Once chemo is over, will I be expected to pop straight back into sexy wench wife? When I actually more resemble bald hippo flatulent single breasted wife? No period now for seven weeks, so am guessing chemopause has finally kicked in… and tamoxifen to follow - so soon I’ll be able to add physical discomfort to mental indifference… and I DON’T WANT THAT! AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH.

Like all of you, I’ve been warned of the physical problems, but given no solutions at all - but have meeting with bcn on tuesday next week, so will raise it then. Also, am perhaps lucky that my onc. is a youngish female, who is likely to be more approachable about the subject than some of your oncs.

Not holding my breath though. I can remember going to see my gp (female) when my youngest was three, asking her when my libido would return because it was doing my head in - and she just looked pityingly at me and told me that post children it was very usual not to have the same urges… I was 34 at the time.

Sophie xxxxxxxxxxx

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i feel the same as you sophie, last thing i feel is sexy with bald fushed face, scars and dry skin.

i have only been with my chap 12 months so our sex life was fab, untl cemo, i worry that it wont get back on track as tamoxefen starts next week. even though i really dont want it…

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The worst thing is, that any time my OH makes some sort of suggestive comment (which I know he intends to bolster my self-confidence, and let me know he still loves me), I just want to smack him in the mouth and yell ‘f*ck off and stop thinking with your d*ck the whole time’. Which is totally unfair. And then I feel even more guilty. Not that I’ve actually yelled that. Yet.

Kaz, it’s sh*t, eh? We’ll get there. xxxx

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lol,i think that too sophie,poor fellas, , , suppose they cant win whatever they do. .
for me letting oh see my in the morning or a night after my bath with no hair no make up was the worse ever. i felt like he wouldnt be seeing me anymore. and i couldnt see how he could possibly find me attractive. i used to hate him feeling my head. i felt more vunerable.

sexy underwear, !!! if i could be bothered, , but cant and dont think it would change how i feel.

xx

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A combination of sleepness nights (can’t remember the last time I had an uninterrupted sleep) and hot flushes frequently find OH disappearing to the spare bed in an attempt to get a decent nights sleep which makes cuddling tricky when there’s no one there however much you fancy it.

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LIF,
I’ve been using natural progesterone cream for about 6 months. ER+ PR- so what the hell. All that time I’ve been on arimidex and certainly not had hot sweats, which I did get on tamoxifen. Haven’t told my surgeon though. I bought the John R Lee book on Natural Progesterone and he recommends it for osteoporosis as well.

Great thread, I don’t know whether to laugh or cry. At 66 and with an OH much much older it has been DIY for years. I do like the sound of that net catsuit though.
surfie

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Don’t your toes get stuck in the holes?

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Oh CM, you do make me giggle! Scaco, the only thing I would need the crotch hole for, would be making sure I could get to the loo on time! Three kids, and chemo chemicals tests the old pelvic floor to the limit!
Tracey
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More seriously though, some great tips- and it would be lovely to keep this thread going and share further advice and experience when people have seen their BC nurse, onc etc. I have not even read the side-effects leaflet that came with the tamoxifen! Can’t face it!
Sophie, I am with you on the suggestive comments by OH. They can’t win can they? If they stopped we would be upset(!?)My husband tried a ‘reassuringly’ lecherous remark when I got back from my mx- to which I had to quip back, ‘can I wait till my drains are taken out?’ Sometimes you just have to laugh. Or not!
Tracey
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Hi all, great thread lif,
sounds like we are all in the same boat, my sex drive has completely disappeared, i have always had a high sex drive much more so than my oh, i hate not having the itimacy but to be honest i dont like looking at myself and i wont get undressed infront of oh anymore, if he`s in the room i turn my back, hoping it will come back in time but not holding my breath!!!
hugs julie xx

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HI all, still getting great reassurance from reading everyone’s comments - had a real chuckle at the thought of a BCN conference or similar in a months time where they all say to each other - my patients seem obsessed with sex at the moment, and another says, yes mine too! Little do they know its down to our lovely LIF!
Julie, I used to turn my back on my OH when changing (WHY -she’s an Onc for goodness sake so has seem millions of MX scars in her time)…but the other day found myself not doing it - 13 months post MX…hadn’t thought about it, just didn’t do it.
bw Nicola

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it seems my OH cant win. he says how much he fancies me and calls me beautiful but im still in tact, so to speak, and i worry that he will look at me and not thinkk that once ive had the chop. but if he didnt say these things at this point i would worry about that! ‘worry’ is female word!

im hoping that my inner self can overcome the physical and that i do feel im sexy and therefore will be. best not hold my breath.

been thinking about the ‘mercy shag’ phrase, which lif created and i have used. thinking that we are putting a girl slant on sex, which is not the way a man thinks. whereas a woman can have sex when not necessarily in the mood and can fake an orgasm a bloke cant. he has to have an erection, whhich he can only get if he’s aroused. so im going with it! if he has a stiffy then clearly a bald, eyelashless,eyebrwless woman floats his boat! fingers crossed i can add mono-boobed to the list.

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Well it does still work. Rediscovered what Saturday mornings are for. OH happened to land his hand on unmarked boob, which felt like a bit of a stretch for him. So I moved it to the other one with the scar and said “you can grope that one if you want, it still works.” As you can see we’re up for the sexy comments…

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LOL CM thanks for sharing, had a similar Saturday morning feeling and managed to share our first really intimate cuddle since FEC1 5 days ago. Not ideal for me as have had annoying on/off period for nearly 2 weeks now, and had my first proper night sweat last night, so it seems the old hormones are definitely off on a frolic somewhere and its all starting to kick in. OH seemed genuinely happy and relaxed tho so I take a good bit of comfort from that.

Also the avoiding of the whole snogging thing is affecting us, it seems awful to be avoiding such a fundamental act of intimacy in case of germs - I’m using that foul mouthwash 4 times a day like a good girl to hopefully stave off mouth problems and I’m sure I must taste disgusting anyway, but it is weird!

Keep posting ladies this is really important.xxx

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I’m a little further down the line, almost 3 years, so reporting what happened to me after time, I had my ovaries removed a year and a half ago, so was plunged into a serious surgical menopause, not nice!, am now on aromasin after 2 and half years of both arimidex and femara, and to cut a long story short have severe vaginal and urinary tract atrophy, which means that intercourse is nigh on impossible and anything else will result in a urinary tract infection

All this means that my hubby wont even approach me now, although I really dont have much of a sex drive I so miss the closeness and like others have said ‘the twinkle in his eye’ I am more angry about this than any other part of my treatment, losing a boob, my hair etc, because its taken such an important sweet part of my marriage and I’m always worried that my hubby will one day be tempted by one of the many ‘normal carefree’ women he meets in the course of his work.

I really do feel for the men involved with us in the BC road. I imagine, like myself, we were all just getting on with our lives, wild sex, sexy undies, early morning prods in the back, lol before BC struck, then our guys are faced with a new woman, not just in body but in mind too, they’ve got a lot of adjusting to do too, and to be honest just cos a guy loves the bones of you doesnt necessarily mean he feels the same regarding sex, yet he has a lot of pressure on him to reassure his woman and a lot of the time he cant do right for doing wrong.

Me and Hubby are only in our 40’s and I grieve constantly for what we had, yes I can still do things to please him, but as he says, the biggest turn on for him is my enthusiastic participation which is hard to muster knowing that I’ll be on antibiotics and in pain for a week after, lol

I’m seriously considering the topical oestrogen route even though my onc has said a definite no due to me being highly ER+, its QOL at the end of the day.

SS

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Bump, in case anyone else feels like joining in.

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post deleted

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I had a cystitis problem after hysterectomy 2 years ago. Got put on a one off dose of Trimethoprim antibiotic for ‘urethral syndrome’ where the infection lurks in the tissue and doesn’t show up in the wee samples; took one dose after every ‘event’ and it worked a treat.

Have since had two courses of weapons grade anti biotics for infection in Mx scar, and cystitis has done a runner (so far)!!