Sunday, on The Group Room radio show, I read excerpts of dating and sex tips from my book, which served as the springboard for conversation between a panel of young adult cancer experts. Listen to the podcast here – it features the orgasmic Stephanie LaRue, fabulous author Cathy Bueti, and creative musician Charlie Lustman (come on, it is kind of funny that a guy named Lustman is talking about sex.)
It was a great conversation. But, now I want to write about issues that weren’t talked about on air – some less spontaneous and vivacious parts of sex and cancer that may or may not be your reality.
When I interviewed patients for my book, I met survivors with
post-traumatic stress disorder who couldn’t stand to have their bodies touched by a lover, partner, or spouse. Others had hormonal shifts that threw them into deep sexual malaise. For some just the stress of dealing with cancer zapped their sexual energy and they hadn’t had sex with their spouse for over a year. This stuff is real and is really hard.
I deal with many of these issues in my book, and while I’d love to hear a dialogue about it on air, it is hard to find survivors willing to publicly expose such private experiences. So I want instead to make use of the ability for you all to comment anonymously, or using your real name, on my blog, to speak out loud about some of your real life experiences of cancer and sex.
Has your cancer prevented you from having sex for long periods of time? Are you embarrassed by your body or hindered by medical devices? Has PTSD spilled over into your sex life? Have you had the opposite problem of being such a horn dog that you wanted to hump everything in sight and what was that like? (I’ll tell you from personal experience that it isn’t all it is cracked up to be!) How did you handle these sexual issues? Is there a comfortable place or person you can talk to about this stuff or do you just keep it inside? If you have a partner, does it drive a wedge in your relationship or have you grown closer? What advice or hope do you have to give to others in this situation?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
April 15th, 2009 at 5:43 AM
i deffinately go through phases. heres the deal i date a med student who clearly knows the body (thank god for the future of medicine). One night (of many yay!) we were having a moment and he randomly says “i can feel your cervix” from that point on it threw our sex off a bit. I had cervical cancer. And to think that he knew what my cervix felt like felt wrong to me. To me it was ruined it was ugly it was cancerous how can he feel that and still want to be with me. I went from being on the edge to being on edge. How he can feel what was cancerous and still want to be with me didn’t make sense. I also felt angry at him. I don’t have health insurance. I just applied for it again, itll become effective 5/1 exactly 1 week before my 28th birthday. (Im gifting myself a Pap) I was irrationaly angry at him bc well what if its back why didnt he feel it why didnt he know why didnt he fix it why didnt he say something? I know thats irrational but now that Ive found the one I want more than ever to never be sick again. (I should explain I previously never wanted to be sick again duh but now I have something to really live for and be excited about and want in my life). I get so angry when cancer interferes with my sex life. Im not into 3 somes. My boyfriend is too good to be subjected to my insecurity. But hes so good he understands and helps me through it. I love him more than the world and if my orgasms are reading this. We miss you, please come back!
April 15th, 2009 at 5:59 AM
I was diagnosed with Acute Lymphoblastic Leukemia 19 years ago when I was five years old. I have been single all my life. My first date ever was last semister and obviously nothing happened after that. I’m 24 years old going on 25 and I have never had a boyfriend, never been kissed or anything like that. My younger sisters who are 21 and 16 have been on more dates and been kissed by more guys I have and its so hard to deal with that. I had really hard time when I came home and back to Kindergarten from being in hospital for five weeks. “Mommy, can I go back to the hospital? The kids at school won’t play with me” I said. I was in public school for 7 years being taunted abnd teased every day not just because of the cancer but also because of the learning disabilities that I developed from chemo. I finally left public school to attend a special ed school which was so much better for me and why I’m graduating from college now. I guess its because I have trust issues with “normals” because od what happened to me as a kid. I am very open about my experiences but, how is a new guy who comes into my life going to take that? I just want to know that there is one guy out there for me who will love me and my scars, and the story behind them.
April 15th, 2009 at 9:35 AM
Sarah,
There is someone out there who will love you for your scars and the story behind them. I’m not a Polly Anna: I say it because it has been my own experience.
I had an incredible boyfriend once whose body was riddled with scars. He was very sexually inexperienced as well, which was actually kind of fun for me to be the teacher! I didn’t care about his scars or inexperience, I loved his mind, his heart, and his body too. Our relationship was a good one and ended for other reasons that had nothing to do with his physical issues.
It was incredibly frustrating for me being single and dating with cancer. I went through a lot of heartache and rejection. I think when we have physical and emotional challenges in our way, we have to try harder than other men and women to bolster our self-esteem and work through our trust issues so that we can make ourselves as available as possible for the right person who does eventually come along. If we don’t see ourselves as beautiful and capable nobody else will either.
If you are able to check out my book, there are lots of great tips on how to be sexual with yourself, which I think is a really important step to prepare for being sexual with someone else - whether it is your first time or you have been unactive for a while because of cancer.
Hang in there. It is not an easy road, but one that I hope will eventually lead you to a great partner who will have lots of fun sex and romantic moments with you!
Lots of love,
Kairol
P.S. I’m finally married to a great man who had medical issues as a child. Everyone tells us we are the happiest couple they have ever met. I think they are right!
April 15th, 2009 at 11:01 AM
Great blog Kairol! This is such an important and yet difficult topic for people to be open about.
Sarah, I know how tough it is dating with cancer. But I do know that you can still find love with scars and a bald head as in my case! I was widowed when I was 25 when my husband was killed in a car accident. We met in high school and he had many facial scars from disfigurement at birth going through many plastic surgeries. It affected his self esteem greatly. I was able to see past the outside to the special person he was. 7 years later when I was diagnosed with breast cancer at only 31 years old I was now faced with my own scars from a mastectomy, and a bald head from chemo. I continued to look for love through all of that treatment, dating online and it was tough no doubt! I met many guys who couldn’t handle it and bowed out gracefully as well as those who were not so nice about it. As I was approaching the end of my chemo I met another guy online who just lost his mom to breast cancer. We met and hit it off. He was able to see past my scars and my cancer enough to want to get to know the person I was. I thought it was ironic how I was dealing with some of the same issues as my first husband regarding self esteem. We will be married for 6 years next month.
I have been thrown into menopause courtesy of chemo and that has affected me greatly in the sex department. I have found it is important to keep the lines of communication open between my husband and I in order to deal with my crapness in that area because of my medical history. I get pretty frustrated at times but know it is not the worst thing compared to what I have gone through.
Just know that you are not alone. It is a hard road but one that can hold much happiness someday. I wish for you the strength to keep moving forward. Always be hopeful! You never know what could be waiting around the corner! :)
Hugs,
Cathy
April 15th, 2009 at 8:41 PM
I was diagnosed with a sarcoma in my head 26 years ago when I was 3 years old. As soon as you meet me, you see one of my four scars. I’ve had a few dates (4 or 5), but no relationships. Never shared a kiss. My younger brother who’s 26 has never had a relationship last long either, and sometimes I wonder if he would’ve done better without my bad example. I went to school with normal kids every year and never considered any other options. Finished college in 2003, and have been moving around the country doing different things for work since 2005.
Sarah, if you want a second date, it’s yours for the asking, even if I have to save up my bargain-basement pay for six months to get over to see you wherever you are. Can’t promise to love you, but can promise you a chance.
April 16th, 2009 at 5:17 AM
fabulous blog. great to get this conversation going. im almost embarssed for my comment, but it was good to get it out to someone anyone its not something you share with “normals” even on PC my ex is on there (ha we were dx the same week different years i wont talk about it not that hed mind its just awkward) so thank you so much Kairol.
May 5th, 2009 at 7:52 AM
Dear Kairol: Just got an announcement today about your book and can’t wait to read it. I am working on a multimedia educational and counseling tool, funded by a small business grant from the National Cancer Institute, called: Tendrils: Sexual Renewal for Woman after Cancer. It also covers fertility/pregnancy. We interviewed 11 survivors about their sex lives-some young like you and others more typical. In addition, we will explain how everything works, what cancer treatments do to interfere, and how women can help themselves or seek appropriate help from their doctors. We also will have info for partners throughout. Every time I see something like this, I can’t wait to have it available, but realistically it will be a couple of years. Kudos for all you are doing to help others! Leslie
May 23rd, 2009 at 6:18 AM
My name is Linda, I am married and aged 35 and living in Ireland. I was diagnosed with breast cancer in 2006 at age 32, I had a lumpectomy, chemo, radiation, the works. Then in late 08 I found a lump under my arm, yeah you guessed, it was in my lymph nodes. Mastectomy in 08, chemo and just before I was due to start radiation they found it in my lungs on a CT scan. Now trying to fight yet again. Early menopause kicked in as soon as I started chemo in 06 and has stayed with me since too.
Sex is the hardest part, I can do all the treatments and drugs but trying to explain to my husband why I cannt stand to be touched is impossible. I think he kinda got it when I said that for a woman to be in the mood she needs (i) to be in the mood, (ii) to be comfortable with her body and (iii) to be relaxed. Chemo kills your libido, surgery kills your body image and cancer leaves your mind unable to relax.
He has been great and we managed to have a wonderful night a few nights ago, including my first orgasm in 2 years! I have a CT on Thursday which should tell me whether I am winning this battle or not - maybe good news will wake the rest of me up a bit!! Fingers crossed. Am off out to buy the book!
May 26th, 2009 at 10:53 AM
Linda,
Thanks for your comment and your candor. I think a little dinging bell should go off, or the sound of angels singing every time a cancer patient has an orgasm!
Keep me posted on your check up. I hope all is well.
Kairol
June 3rd, 2009 at 12:36 AM
Hi Kairol
Got great news yesterday - the current chemo is starting to work, my tumours have shrunk by 50% in 3 treatments, looks like I will be around for a bit longer yet! Looking forward to keeping an eye on this website as I go along.
Linda