Sex after cancer

[skybluechair]

Have name changed for obvious reasons.

Am 35. 1 DD - almost 2. Had cancer last year, which was treated with surgery and chemo and which is now cured. My fertility has remained, but we've been told not to try for DC2 until the summer.

I have a horrible scar right down my abdomen (belly button to below bikini line) as well as a scar from my port (above my right boob). My hair is growing back and almost looks I've chosen to cut it this short...

DH and I had a decent enough sex life pre-cancer, subject to the usual tiredness of having a young child. But I'm really really struggling at the moment to get back in the groove.

I hate my body - I feel that it let me down by getting cancer. I hate how it looks - my scars are horrid and permanent reminders of the cancer. I hate my hair - I don't feel feminine or attractive at all. I feel violated - I had some IVF pre-cancer in case my fertility was destroyed, as well as various scans last cycle to check things were ok again, so I feel like my body isn't special or personal to me or DH at all: like it belongs to everyone. And I hate hate hate having to use contraception (condoms) - it makes me feel dirty, diseased or poisonous.

DH tells me he fancies me just as much, and that he still wants to have sex lots, but I'm just not interested. George Clooney could walk in right now wearing nothing but a towel and I wouldn't care.

Any advice?

I'm so glad you're alright now, but so sorry you feel like this.

Just regarding contraception, could you have an IUD that's hormone free?

It's inevitable you're going to find it hard coming to terms with your new body/hair - I understand what you mean when you say you feel violated.

Are you able to take comfort in physical affection, hugs and cuddles and kisses, rather than going headlong into sex?

well, the saying goes you cant truley love someone else before you love yourself first.

Your body is what it is at the end of the day and all i can really suggest is maybe taking baby steps? try kissing one day, then something else the next.

dont really have any massively useful advice for you but all the best op

Hi Skyblue. First off it's great the cancer has gone. I suppose it is bound to take period of readjustment until you feel you have your mojo back. No doubt your hair will grow longer fairly soon, but maybe a spot of retail therapy might give you a lift? Outfits to complement your shorter hairdo. (or maybe I spend too much time on style and beauty )

Can't help re Jonnies as we use them all the time and they don't bother me a bit! Sounds like you have a lovely DH btw.

Hi skyblue - so sorry you have been through such a hard time. I don't often venture onto 'relationships' but have also had cancer so I can definitely empathise with how you are feeling.

Firstly - I'll say it to get it out of the way - don't be afraid to ask your GP or onc. about counselling, - the body changes and the emotional stuff you have to deal with during and after cancer are a big deal, yo haven't failed if you ask for help, its a massively out of the ordinary thing to happen in your life, and you'd be pretty unusually if you didn't struggle at some point.

Secondly, the body issues. It is hard to trust your body again, DX can happen so fast you can go from being (so you believe) healthy one week to finding you have a serious illness. It's bound to knock your confidence. But your body has also got you through this illness, you have recovered, so your body has played the part it needed to, to get you through chemo etc.

I have found that things like yoga, swimming, exercise in general have helped me get more in tune with my body and focus on its strengths rather than its weaknesses.

Scars - they are a bastard aren't they? - a constant reminder that you've had cancer, and for a long time you were a 'cancer patient' first and a woman second.
The advice I was given (and I am also heavily scarred) was to take time to just look at my body naked in a full length mirror, in low lighting or candle light at first if it is hard for you to do. Focus on the things than are good, that you like. It may just be small things at first, a certain curve, a shoulder, a hand or foot.

Gradually get to know your 'new' body better and as you become accustomed, i will become easier for you to focus on the positives. Then treat yourself to some feminine undies or lingerie - doesn't have to be overtly 'sexy' - just something that makes you feel pretty and feminine, a pretty cami and matching knickers if you want to be more covered up.

Sex - it sounds as if your Dp is a good man, my DH and I started just with lots of cuddles and loving talking together at night. It took a long time before I got confidence back (and for him too - because he was frightened of hurting me) but it did come back. Chemo and cancer drugs (esp. hormone related ones) can affect your libido in a big way, so that is also something you might be able to talk over with a specialist nurse if you have one, or your GP. (My GP adjusted my drugs slightly, and my nurse suggest various practical things, - sorry if TMI - but things like lubes, that can be used safely after cancer, toys etc)

OK - this is rather along post -so well done if you've managed to read through it. Getting on with life after cancer is a big challenge, an article which I found very helpful is this one you can cherry pick from the sections whatever might be relevant, or read through it all, - I found that he really gets what its like, and kept nodding in agreement!

I've also had some recommendations by a nurse for books about sex which are especially relevant for cancer patients. Not quite sure what I've done with them, but if you'd like the titles, I'll happily have a look for you - might take me a day or two

Lastly - if you want a support thread, - go onto health there are a group of us calling ourself 'Tamoxifen' (after a beast cancer drug) - we aren't just about breast cancer though - we've been joined by women with various different cancers, including gynae, so we talk about all sorts of stuff, and try to support each other. NO questions TMI, nothing off limits. There's a lot of friendly chat too - but don't worry if you can't keep up with posts, just dive in, someone will always take time to answer you.

HTH
.

Thank you, all of you. Am so touched by all your support and inspired by your good ideas.

I think we definitely need to take full sex off the menu. Just kissing and cuddling doesn't feel like such a huge thing, and also takes away any need for condoms..And I'll try to be nicer to me: I'm not good at that so it'll take some reprogramming..!

I'll talk to my GP re the non-hormonal IUD: I didn't realise that you could get such a thing!! That will at least take away the reminder that I've had cancer/aren't allowed to TTC when everyone else around me seems to having #2...

KurriKurri - your post was really helpful. I'll read it through again slowly and try some of the self-help things you suggested. If you have a minute to find those books, I'd be grateful, but please don't stress over it. And I'll come find you on the other board..

xx

I think it would be very helpful to have some counselling.

I also had major abdominal surgery to remove cancer inc. major scarring, and had the six months chemo etc but tbh I didn't feel like you do at all, so really would urge you to get some help about your feelings.

Hope you feel better soon.

Very interested in this thread as I have very similar feelings to OP. I have facial palsy following cancer surgery so every time I look in the mirror and see my droopy, heavy face, I can't see how my DH could find me attractive. I struggle to think of myself as a sexual being at all, although my DH is wonderful and tells me how lovely I am on a regular basis. I find it hard to believe, though.

Kurrikurri, your post is really helpful. I'd really appreciate the names of those books, please.

skybluechair, Kurrikurri us right - our bodies may not look like they once did, but they are pretty amazing to have dealt with everything that's been thrown at them - first the dx and then the treatment, which can be pretty barbaric. Well done to all of us who have got this far.

Oh, counselling really helps (sorry, forgot to say in first post) but it was returning to exercise that really helped me start to feel "normal" again.

sky one of the things with cancer is that there is this great push to 'win' the battle and what we are left with can be similar to post traumatic stress disorder. Meanwhile, everyone else seems to have moved on. It is also difficult for others to understand that yes, you are pleased to be alive but really would rather have preferred not to have to feel terribly grateful for your scarred body, that you shouldn't be concerned about your physical changes etc. I actually had a counsellor question why it should bother me having a breast removed

I recognise that feeling of missing your body, the one you have always had. I personally found it really helpful to dump the useless cahh counsellor have counselling from a specialist who worked with people who have gone through big body changes. I also found it comforting to do whatever made me feel like 'me'. One of my personal things was wanting to wearing a normal bra after surgery and as this wasn't an option during recovery I dyed some of the less massive white sports bras I had to wear in bright colours to make them seem more normal. What could you start with? Maybe throwing those condoms in the bin (totally get why that would upset you) and finding an alternative method would be a start. Some doctors don't seem to consider the emotional needs of patients beyond the obvious when dealing with serious illness and 'after care'.

Kurri has given you some really good suggestions. You will eventually adapt and begin to love your new body, your DH already does. I also Give yourself time to adjust, concentrate on whatever floats your boat for now and the rest will fall into place.

too many typos to mention, I'm sure you'll get my drift

hello all - just popping back with the books titles

Sexuality and fertility after Cancer - Leslie R Schover

Spinning Straw into Gold: Your emotional recovery from Breast Cancer - Ronnie Kaye

These were the couple that I was recommended (By a sex therapist - I went to a talk about this topic) I know the second one mentions breast cancer, - but I think there may be a lot in it that is relevant to anyone dealing with issues of body image and sexuality after cancer.

The hand out I have, says there a quite a few books available on this topic - so worth a good scout round on Amazon and Google I'd say.

Other resources.

www.macmillan.org.uk

www.cancerhelp.org.uk

www.breastcancercare.org.uk

All have either publications, or specific sections on their websites which deal with sexuality. intimacy, body image etc. (Don't be put off by one being a breast cancer site - often the info. in their booklets is relevant to lots of cancers)

If there is a specific organisation for your specific cancer - check out their website, and look through their publications.

The other thing that came to mind after I'd posted last night was that its worth looking for young women's support groups in your area. You'll be able to find out through your GP surgery or oncology unit, in the info rack at your hospital or at any cancer support centre near you.

I know there are specific questions and issues affecting younger women that it might be helpful to talk about with a like minded group. - Worth considering anyway

I've just been re reading the info I have, and another suggestion was to do with touch. It suggests that you have a nice bath or shower, trying out different scents - aromatherapy or bubbles - and notice the sensations you feel when you wash yourself. Then when you dry yourself - notice where you like pressure on your body, how hard, how gentle. Then try some lotion or oil, - again notice where you enjoy rubbing in lotion, what pressure or scent feels good.

It might be different from how you felt before cancer, - it's all about getting to know new aspects your body, and as you learn the sensual things that bring you pleasure, you can gradually bring them into your partnership

HTH

Sweetest thing - sounds like you have a lot to deal with, but aren't we lucky in having such wonderful husbands.. I never guessed on my wedding day just how important the 'in sickness and health' bit was.. I've started back on a proper exercise programme now which is good: I lost a lot of weight during chemo (wasn't overweight to begin with) so it's only now that I feel strong enough to expend energy on things other than day-to-day living. Hopefully that'll help. Did you get counselling through your GP? Mine referred me in November but I still have to even get an acknowledgement through from any clinic.

Helen - you're totally right. I am grateful to have survived and have my life back etc, but I'm also resentful at having to be grateful. I'm hopefully getting my first post-chemo haircut in a few weeks, and I'm going to try to make it into a lovely event: find a nice hairdresser, have a glass of wine, and be proud. Plus I'm revamping my wardrobe: now my figure's back I'm going to try to look as nice as I can.

Kurri thank you. I'll take a look through all of that and make some purchases. I've been to some 'after cancer' sessions at my clinic but they haven't really dealt with the issues affecting younger women (I'm by far the youngest: most people are in their fifties and over). My huge issue throughout everything has been having to delay completing our family (and the jealously/anger that comes with this) and it would be good to talk through this with others. I love the idea about touch: DH is away this week with work so I will treat myself to a nice bath and try that.

xx

hi - I dont know if this helps, but this is my perspective... I had melanoma aged 26 - I'm now 50. In those days it was serious radical surgery, I have a crater bigger than the palm of your hand on my shoulder, which was grafted with skin from my butt. It is not at all pretty, and not how I imagined it would be, I thought I would have a 'normal' area with a little narrow scar around it. So, very nasty scarring - shoulder and backside - ok it's (literally!) behind me, but it affected my self-image for years.

Quite soon after the surgery I had some counselling which helped a bit; then life just came along and I kind of 'forgot' about it. Then something happened 5 or 6 years ago which really shook us both up and forced me to confront how I felt about my body. And you know what? It's actually OK. The situation we were in (I wont go into it) forced me to confront the way I felt about myself and discuss it with DH... I wont say that it wasnt painful and emotional, but actually, you know, it's just a body? and what people love is the person, not the covering. I know this now. xx

That's a lovely perspective boschy - thank you. Hope all is well now.

Hi Sky, this has been difficult for me too - nothing doing in quite some time! But at the moment cuddles and affection are enough for both me and DP. I understand about the scarring I think - for me it's not so much the disfigurement but the constant reminder of what was and still is a pretty traumatic experience.

KK has posted some really useful stuff so don't know whether this adds much but really only posted to say you're not on your own in this and it seems a fairly normal reaction

Skyblue - my referral to the psychologist was part of the follow-up from the hospital where I had my diagnosis. It was all very joined up, with referrals and appointments with psychologist, speech therapy and physio all sorted by the time I left hospital, so I was very lucky in that respect. I am sorry you are having to wait such a long time - can your oncologist help sped things up, maybe? I lost lots of weight too (radiotherapy for me, but because of where the radiation was targeted I got various side-effects which made eating physically painful and also my taste buds were affected and food tasted weird, so I had little appetite - bummer, eh?) but once I was able to, like you I returned to exercise, which has been critical in helping me feel I was starting to return to "normal".

The thing is that it's a different normal to the one I had before, and that's what is hard to process, I think -at least for me. I hugely and genuinely appreciate how amazing my body is to bring me through the last year of aggressive illness and even more aggressive treatment, but I don't look the same, am now deaf in one ear from the r/t and have lost some mobility in my left shoulder due to losing one of the nerves during surgery. I guess it's little wonder I struggle sometimes with self-image. But then I think that I'm still alive to have that struggle, so then I feel guilty for feeling that things are difficult.

Sorry, this has turned into a self-pitying moan and I didn't mean to hijack yr thread, skyblue. Just having a bit of a down day.

Your, not yr.

Skyblue - I totally get what you said about having to be grateful for surviving yet not wanting to be grateful for the body you have now as opposed to the one you had before!

One thing I found really difficult to cope with was that everyone around me (family, close friends) were all just so happy that I had survived that they couldnt understand or didnt want to know that I was still struggling emotionally. And I felt ungrateful if I ever tried to bring it up... so I just stopped trying. I think it would have been better if I'd worked the feelings through at the time, like you are doing.

Survival in my case sounds over-dramatic as I was very very lucky and although my melanoma was advanced the radical surgery got it all out so I didnt have to have chemo etc. Actually I think that made people's perception different - like "oh it cant have been that bad, all she had was an operation" so that made me feel even more churlish about being upset about the scarring.

Oh and re the poster whose counsellor expressed surprise at upset re having a breast removed; I told mine that I was upset about having put on weight and he said "oh well you'll never be Twiggy, dont worry about it" umm, thanks for that.

Another cancer survivor here

Could I add to all the wonderful advice above - it took a good 2 years post-chemo to feel like I had a normal amount of energy back. Also over the course of 3 years I had a lot of counselling. What I'm trying to say is if you don't feel physically and/or mentally back to normal, it's not surprising your sex life would suffer