You know what I don’t talk about – or at least, what I don’t blog about? Sex. This is partly out of respect for my husband, who was an incredible gentleman during the past year, and partly out of the fact that my grandmother reads each and every entry of my Bumpyboobs.com blog.
However . . .
Grandma doesn’t read this blog. (I never gave her the link, otherwise she’d totally be reading this right now.)
And my husband understands that when talking about recovery and moving on, essentially when talking about life after diagnosis - sex matters. While during treatment it was more than a slightly difficult subject (for reasons I’ll explain below), now we’re in our summer of healing, which includes (te-he) sexual healing.
But I’ll spare you the HBO drama details. No risky scenes of dropped clothing and ferocious passion (Though yesterday after that glass of wine and a night to ourselves, there was, I’ll admit, a copious amount of both – but you know what, it hasn’t come easy. No sir re bob. Not at all. It’s taken heaps of effort to recover from what was, essentially a very difficult year sexually speaking*.) Instead I’ll write you two sections.
1) Ways in which cancer messed up my sex life.
2) Ways in which I took my sex life back.
So, first: Ways in which cancer messed up my sex life.
Surgery.
Often times the solution to cancer is to cut-it-out, meaning often times, the body undergoes a drastic loss. I was lucky, the cancer was in my breast, and as far as invasive surgery goes, so the nurse told me, this was the best cancer to have. (Wohoo?) All I lost was my right breast, many women lose much more.
But nevertheless – it was my right breast. For ages it was difficult to see the scar. I didn’t trust that part of my body. I was terrified of lymphodemia. I wasn’t sure how to dress. I threw away my bikinis. And if my husband's hand would even hover above the area – swap – I’d swat it away like a fly. No touching. Because touching meant I dipped into instant depression and rumination over cancer, and our lives changing, and the threat, and the treatment, and will anything ever be the same again?
No touching.
It took a while to recover, and to be honest, I feel like maybe just now I can allow my husband to freely explore that side of my body and not flashback to the chemo or surgery. It’s gotten better, but it’s also taken time.
Exhaustion and Depression.
This is like a game of duck, duck, goose. Exhaustion is walking around the circle of possible reactions, hand above their heads, and we all wonder who she’ll pick – then bam! Exhaustion picks Depression, and Depression is up and running, chasing Exhaustion in a circle – running, running, running – and Exhaustion makes it to the open space, sitting down untouched! So now it’s Depression’s turn to pick a goose . . .duck, duck, duck . . . then guess who he picks since chemo is tomorrow and everything starts again? That’s right: Exhaustion. They’re up and running again.
Well that long winded description was basically to say that I was tired. Dead tired. No matter how many times my husband might have poked me in bed, or kissed me on the neck (when the depression hit hard, I didn't even understand how he could look at me with that thought on his mind. Ugh. Chemo Catherine wasn’t like your average 28 year old. She looked sick. Sick and bald and sick) . . . my answer was a constant and firm: “No.”
The Narrowing.
Now this is a tricky topic. Who wants to talk about their vagina (who wants to say vagina?) narrowing. But it happened. Who the heck knows why? Why does chemo narrow a woman’s downstairs passage? Two things happened. First, menopause struck and I dried up like the Sahara. Second, I tightened. Dry and tight. Guess how fun sex becomes when that happens? It was like trying to squeeze your head through a children-sized turtleneck.
The pain was sharp – in fact, it’s still sharp today – seven months post chemotherapy, and every time there is that moment of supreme discomfort . . . only now I know it will pass. Back then I thought it might never stop. That’s a horrible feeling.
So my shop closed up for about five months straight. Also coinciding with some of the most difficult days of our relationship. With the stress of cancer, the difficulties of chemo, the lack of energy and the absence of love making . . . well, it was challenging.
Now for the happier list! Ways in which I took back my sex life.
Actually, I’m no longer in the mood for listing things. I’ll just tell you straight. Firstly, we waited.
Also, once chemo ended, I decided to try some vitamin E. Now doctors can prescribe a variety of things to help the juices flow – there’s even a forum conversation on facingcaner.ca, so do go check that out. But for me, I’d had enough of the lubricants and certainly didn’t want any more drugs. . . so I combined vitamin E with a dilator. And step by step, with a tolerable level of pain, the dilator was expanded over a month or so. Ugh. I cringe at the thought of my grandmother – or anyone’s grandmother – reading about my expanding lady part.
Whatever!
And finally we used the ultimate ingredients: patience and persistence. After five months of no action, even with the dilator helping, things were madly uncomfortable down there. But we tried again and again (with several instances of me saying, “Stop!” because it was really too much), and the discomfort began to last shorter periods of time. Now, here in August, it’s only in the first moments that I feel that pain. . . and I think it’s worth enduring for the fun that comes after.
And that’s where we are today, having fun, thank God, after months of really having to try and persist and work to regain our sex life.
Frankly, I was lucky. Not all partners are able to cope with the intensity of chemotherapy or cancer . . . and I’m guessing none of them initially realized that all ‘fun, slippery times’ will be cleared from the table till recovery starts to happen. I’ve heard of relationships which have crumbled . . . I’ve heard of relationships that have strengthened. Also, I’ve heard of women who had sex all the way through chemotherapy – so good for you are one of them.
And if you are in the middle of a sexual slump, and feeling guilty or frustrated, all I can say is this: hang in there, this isn’t your fault and any good partner will keep that in mind. Let the body react as it needs, and recover at its own pace. Then, when you feel ready talk to your doctor about options. Maybe buy yourself a dilator (with vibration for added blood flow) and get started on the project.
Right – sitting up from the computer – enough sex talk. It’s not even breakfast yet and I still haven’t had my cup of tea. But if you have anything to add, or any advice to give, do take this chance to say something. You never know who you may help. I was certainly scanning the forums when this problem first developed, and it was a relief to learn that other women had similar issues.
Now. Time for tea.
Have a lovely day.
PS. A big thank you to my husband for kindly allowing me to discuss this intimate aspect of our lives. While it is intimate, it's also so universal. Thanks, babe. You are an incredible man.
*Never thought I’d write a sentence like that in my entire life. Sexually speaking.
Thank you, thank you, thank you for posting such an honest and candid post. You’re awesome.
C.
Thank you very much for tackling this subject. What I would add is that if your relationship was strong before cancer, it will probably be fine and might even improve. If the opposite was true, well, things will be a lot tougher. I would say the main things to remember are communcation (no surprise there!), patience, acceptance and did I mention PATIENCE!
Very good point, Nancy – you’re bang on about the relationship strength being essential.
That was a great post. I can relate to all of that, my poor husband was a patient gentle man all of last year with my treatment. The thing is no one talks about this and its a major deal, especially once treatment has finished and you kinda expect things to go back to the way they were. Sexually speaking things have only just started being right and I’m almost a year out since finishing chemo. I super appreciate this post…thanks!
Well done Catherine!
I commend you for your honesty and bravery.
You’re so right, if you’re going through it, you know that others are too. Good for you for writing about sex and vaginas and dilators. You’ve not only written about sex after cancer, but you’ve done it well.
Katie
Thanks Katie. Oh, I even just now blushed at the word ‘vagina’ and ‘dilators’ in your comment. ha!
Awesome post!
This is a tough topic to write about. For me it is something I have wanted to write about but, I have students that follow my blog . . . yikes . . . and then of course, family, friends. So . . .
But, thank YOU for having the courage to write about this topic.
I will (since this is not on my blog and at least for now, I am too chicken to write about this topic on my own blog
) say a bit about my own experience here.
Aside from the changes that chemo inflicted, I am on Tamoxifen which essentially blocks the affect of estrogen in your body (you still produce it, but, it does not bind to where ever it is supposed to bind). Anyway, the point is that this affects the libido. It has forced me into an early menopause and well, that is not so great.
I have always had a healthy sex life, and have actually, post cancer found my sex life to be more satisfying. I think it is because I appreciate it more. I can remember wondering (after a particularly bad infection during chemo, being hospitalized and truly not knowing whether I was going to make it out of the hospital) if I would ever have sex again. It was just one of the things I wondered about.
As soon as I got out of the hospital, got back to feeling better, I asked my doctor if it was okay to have sex. He kind of laughed a bit (I didn’t really appreciate that) but, said that it was okay to do whatever I was comfortable doing. Comfortable . . . hmmm.
So, as you well know and have described, it isn’t always comfortable. But, here is what I experienced, I was in so much pain all of the time (my body as a whole) that I found sex to be the one time where I was almost pain free. It was still there, but, I was sort of not feeling the pain if that makes sense.
I suppose it makes sense as there are endorphins and other pain relieving chemicals that your body releases during this activity. It doesn’t (at least I don’t think) help much with the pain that is from sex (if there is pain from that) but, for me, it definitely reduced my overall pain level in my body, if only temporary.
I also took the position like you did that my sex life had to be reclaimed. One of the first things that I was told in my early days of cancer treatment was that I would lose out sexually, that I would lose interest, lose energy, lose, lose, lose. I found that to be very negative and quite frankly, it angered me a bit. As if the insults visited upon us by breast cancer (body parts removed, chemotherapy, radiation, etc) are not enough . . . they were telling me early on to expect to lose that too.
We are all different and react differently to drugs, treatment, surgeries. I for one, took quite a bit of time to recover from most of my surgeries. But, fortunately, (aside from the time out due to surgeries and hospitalizations) I was able to reclaim it.
Thank you for sharing about a very difficult to share topic. While my experience has been different, there are similarities too. Being touched, for example, where I had cancer (my new boob-like-structures) sometimes really bothers me and then sometimes it doesn’t. I guess it just depends upon where my head is at the time. Fortunately my partner is and has been incredible. I am lucky.
Perhaps if I get his permission . . . and get over the fact that my family members and possibly students can read my blog . . . I will write about my experience there.
You have benefited many by sharing your experiences here. I think that most women only (if at all) discuss this with their doctors. I don’t know about you, but, since my doctor hasn’t been through treatment I found it hard to accept his take on what I should expect. I have since dumped him for other reasons and now have a woman oncologist. She is fabulous. Still, hearing from other cancer patients, survivors is really where it is at, I think.
Thank you for your post
Lisa
Thanks for sharing this Lisa – it’s really good to hear a differing experience. So fascinating that sex actually helped you cope with the pain, rather than adding to it (and so great for you, too). And I totally understand the concern over family and friends – that’s partially why I blogged about the topic on facingcancer.ca, where sex is already being discussed. Plus – seriously – my grandmother doesn’t read this site. It gives me a bit more freedom for discussion.
Well done! I am not brave enough to write about this topic so I am so grateful that you have written so honestly about a subject that, many of don’t discuss openly, but is nevertheless an important one to discuss what we talk about life during and after a cancer diagnosis. Thank you!!
Thanks Marie – It took me a while to have enough distance from the troubles (emotional, physical) to write this post. I guess it’s easier to discuss hard times when we’re feeling better, eh.
I found tamoxifen did a number on my libido. ugh.
Wonderful post!
this is huge. hugely huge. it’s all i can say at the moment. and, thank you.
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What a great post this is. And a really important subject. Breast cancer takes such a toll on us is so many ways, especially our intimate relationships. I’m so touched and happy for you that you & your sweetie have been able to work through all this. That kind of patience comes from a lot of love. xx
Thank you so much for sharing this raw and honest post. I can really relate to what you’re saying about pain and it’s hard to find pleasure when something is painful. I think I underestimated how the psychological pain I was in also made me less responsive to sex, which in turn made it more painful. Cheers to you for writing this and for making it to the other side one friskier day at a time
Validation! Thank you for this honest, heartfelt blog. Yet another thing I was unprepared for in this battle (an endless list it seems – but then who among us is prepared for any of it??). I was diagnosed shortly after marriage (ovarian cancer) – so no honeymoon, do not pass GO, go directly to menopause, which as you know adds another layer of complexity to the already difficult maze of post-cancer, post-chemo, post-cancer-free life sex. It was painful, I was way too fatigued, I didn’t feel attractive or feminine, and in having lost my uterus, I lost a lot of my response during the big O. I worried that our sex life would never be the same again. And maybe it won’t be – maybe it’ll be even better than before. I am also in the process of reclamation (hallelujah!) at 8.5 months out of chemo and I’m happy to say that “it’s getting better all the time” (insert Beatles music here). It’s less painful, more enjoyable, and we’re having fun working on it together. Therein lies the key, as you so aptly point out: together. One’s partner makes all the difference in the world. And I’m fortunate to have had an amazing, sensitive, patient, loving husband throughout the entire experience. Now if I could just think of some way to start paying back his kindness…
So again, thank you. Let’s take back our (sex) lives! And here’s to the new sexual revolution.
Wonderful, Lyn! Thanks for sharing your experience, and I’m so glad for you that things are getting back on track.
sweet and well done post. You know, I am a psychologist, so I always look to the head…just easing back into life, all of it, is something we need to give ourselves permission to do. Sometimes, it just takes time to find ourselves again. But physically yes, chemo wreaks havoc in ways we can never estimate…
lauren
Thanks Catherine for the fearless, honest and helpful post. It’s funny, when I started my breast cancer battle I really wasn’t aware of the ‘neutering’ that would occur. I decided to go with the Zoladex too during chemo, in hopes that i’d be able to preserve fertility (like you, i was a newlywed when i was diagnosed, almost a year after our legal marriage and exactly one month from our celebration wedding for our friends and family). It’s so hard to one: face breast cancer, the sickness of treatment, the prognosis, the baldness, the scarring, the disfigurement.. and then the sexual dysfunction. Luckily like you I have a tremendously understanding and nurturing husband who is willing to forgo things for awhile and to try this and that.. Anyways all this to say thanks for having the courage to share your experience. So far we’ve only tried different lubricants but the pain is still too much (i’m still in chemo though (next one is my last- yay!) and on the stupid Zoladex so we’ll see how things go after) I don’t know much about dilators but i’m going to research them now! I foresee some continued difficulties from the Tamoxifen that i’ll be on after so I’ll keep seeking out solutions and hopefully there will be a happy ending on the horizon. Anyways thanks for all your candid posts. It’s nice to know that there are other women going through the same thing at the same stage of life. And ironically, I’m also from Ottawa and living oversees with my husband in Australia and getting treatment here so i really relate to all you’ve been through being away from home. Enjoy being back in the land of poutine, beaver tails and big hills of fluffy snow, I do miss it so much!
Hello Diana – thanks for your message and yes, I am enjoying the poutine very much. Sounds like your treatment is going along the same lines as mine. All I can say is that after chemo sex was still painful, but the dilator helped. And – if you read the other comments here – other women with similar issues have all overcome the hurdle (though effort was required, but it sounds like you’ve got that covered). Good luck and congrats on nearly being done the chemo. That’s a big deal.
3 years post diagnosis, mastectomy and chemo, this is STILL a difficult topic between me and my husband of 25 years. Still madly in love, just not madly in love with sex. Missing a breast is a huge turn off for me and I am the one missing my breast! My nipple (s) have always been my on button. Now half of that is gone. It takes a lot of coaxing to even interest me in having sex. Like you, I do NOT want that half of my body touched. I cannot feel it so neither should he (has been my feeling). Sex should be a 2-way thing – and him finding pleasure out of something I cannot even participate in, well, no thank you. Turn about is fair play and this year my husband has gone through a debilitating handicap where his shoulder and hands have gone paralyzed. He cannot feel and yet he can’t explain that to anybody. He doesn’t want to shake hands. It is AWKWARD…all of the same things that I have been trying to put to words for 3 years and he hasn’t “gotten” it. Now? He gets it. The good news? 15 months post chemo (and thankfully a Tamoxifen “quiter”) I have re-gained my v-jay-jay and my menstrual cycles (never thought I’d say THAT) and at least I can reclaim THAT part. The breast is gone forever so I am learning to accept that – it is slow. I am forever grateful to my surgeon who talked me into keeping the healthy girl – I need her now more than ever!
I have a question more than a comment…
my GF just finished chemo after a single masectomy, we started our sex life again and we have noticed that contrary to what we expected, her arousal comes with alot of lubrication, even more than before, a couple of times she has even ejaculated, anybody out there experienced the same results?… of course we are thrilled about it, we just wanted to see if this was a usual thing…
thank you…
I don’t know about this Ernie – I think individual response to treatment can be quite different, and with hormones being reshaped (chemo, hormone therapy), I suppose a number of different things could happen. But for sure bring it up with your doctor if you are concerned . . .It never hurts to ask.
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This is such an important subject. Thanks for addressing it, as we don’t usually share this topic without permission from partners or others. xx
THANK YOU!!! I am not alone!!!! I have never worked so hard at sex since I was diagnosed and my hubby didn’t quite get it and so I have been roughing it for a long time now — and it helps to know it’s not just me!!!
It’s not just you, it’s soooo many of us! There are things we can do, and I think it can get easier. Good luck, Jenn!