We are surrounded by information. Through the internet, women with breast or gynecological cancers can search endlessly for information about their diseases. Medication, surgery, recovery–it is everywhere. But when it comes to questions of intimacy, information is scarce and usually gleaned in support groups conversations. A compendium of stories from women and their partners about intimacy and cancer is essentially nonexistent.
Thus the reason for this project: it is time to break the taboo subject of intimacy and cancer.
Although I’ve directed this primarily to those with breast and gynecological cancers, I welcome, invite and encourage the participation of those with other cancer types. At its core, the project is about an aspect of cancer fallout that is overlooked.
For many women, treatment-related changes can result in a negative body image which, in turn, eats away at our confidence. Many treatments wreak havoc on sexual desire. Often women withdraw, their partners feel confused and useless. Some individuals seek help, others do not. But even if they do reach out to a professional, without a compilation of stories from those on the front lines no one can be fully informed.
In order to better inform patients and professionals, stories must be collected. They should be truthful and honest and raw, with no concerns about an invasion of personal privacy. From your own experiences, without any worry or fear or embarrassment, sharing your feelings about what you have been through, where you are today, where you hope to be tomorrow will help to fill the void that only exists because, for the most part, we haven’t spoken openly and with total honesty. Some of us have tried to seek answers but were left to find our own solutions. Others may have stopped short of telling the whole story because some of the details felt shameful to share. That ends with this project.
Stage I: My research begins with the collection of stories. Your stories. The stories of your mothers, your aunts, your sisters, your children, your husbands, and your wives. Stories can be a single thought, a paragraph or they can fill many pages. They can be technical, detached, or written in shades of gray.
- Was there a time in which you experienced pain?
- Did or do you feel emotionally detached or angry?
- Are you ashamed or empowered by the changes in your body?
- Is it all about sex? Physical pleasure?
- Is it just about intimacy? A cuddle, a touch, the support of a loved one.
- Have you lost all interest in sex?
- Have you emerged totally unscathed?
Stage II: As the stories are collected, I will collaborate with a highly respected gynecological oncologist who is committed to the treatment of sexual health and intimacy.
Stage III: The goal is to co-author a book on cancer and sexual intimacy. I am confident that such a book, including the experiences of as many people as possible, will have serve as an invaluable guide in the lives of breast and gynecological cancer patients and their partners. Validation, “It’s not just me,” through the sharing of experiences via our own stories may provide a powerful means of overcoming fears and obstacles.
Care to share? The link to the survey is here. If the link doesn’t work, cut and paste url