‘I am just an ordinary woman’¦’
Josephine stepped up to the podium, looked out at the 100 women and a few men, and began her introduction with these words:’I am just an ordinary woman. And I survived cancer.’
The audience clapped and Bravo-ed her on. I am one of the few non-survivors in the audience. I am there as the guest speaker at this Cancer Association of South Africa fundraising event. As guests enter the presentation room CANSA have a slide show screening. It describes the wonderful work of CANSA and offers the message of ‘Hope’.
Were I not aware that this was a CANSA fundraiser I would think I was in a motivational room for soldiers going off to war. As a therapist, as an activist, an author, I work with language. I know the power of words. Words have the power to build us up or break us down. I am always mindful of my choice of words. And I teach this to the people in relationships who seek out my professional services.
Listen to the language of cancer: we are told it is a ‘Battle’ and people ‘survive’ or die ‘fighting’ this battle. We are told to ‘fight’ off the ‘enemy’, the cancer cells being the enemy. And as Josephine indicated, it takes special people to win this war. If ‘ordinary’ people survive they are somehow amazed at their own ‘strength’- again language of war, of power. Doctors talk about bringing in the ‘big guns’ when needing to aggressively treat a cancer. It’s time to stop buying into this language, this analogy of war. Cancer is a disease that afflicts ‘ordinary’ people and requires ‘ordinary’ people to find extraordinary body and mindfulness to continue living the disease and living with the disease once they are done with treatment.
Like most chronic diseases, cancer is not sexy. I am tasked with discussing sexuality with the audience. Sexuality and cancer. I look at the faces of the women who look up to me with ‘hope’ and expectation. I decide to be open about my curiosity- I want to discuss their sexuality. I steep myself in academic literature and discussions with health care providers about the impact of diagnosis, treatment and survivorship on the sexuality of people living with cancer. Now I want to hear the voices of the ‘ordinary’ people.
Am I surprised? The first woman stands up , says her name (at my invitation- why do women never introduce themselves by name- do they feel too ‘ordinary?’) and blurts out that she is a cancer survivor, a woman of 54 years old and declares herself as a ‘Facebook orgasmic’ woman. ‘A what,’I ask. She shares that she feels too self conscious about her body shape, her one breasted chest and so hangs out on Facebook. Here she feels safe meeting and chatting to men and this is where she is orgasmic with these men. Wow! The room explodes with woman ‘fighting’ to tell their stories. Their sexual stories. Women on maintenance therapy are sexually disadvantaged ‘ however research tells us that if her feelings about her body, her relationship are positive she will find a way to be sexual.
A one breasted woman shares how she has chosen not to have reconstruction as she wants to feel the sensations she still has from stimulation of her chest. She is embarrassed to tell her doctor the reason. Another woman shares how she has been a ‘service provider’ and after many months the consumer still has not committed to more than weekly servicing. So she has closed shop. The audience of women clap her on. Women with cancer have sexual rights too and need not accept less than well women. I am left wondering if this is common in women living with cancer: being grateful for any sexual attention thus accepting bad behavior of partners? Suddenly we are in what feels like a ‘sexual show and tell of women living with cancer.’
As I stand at my table displayed with sexual health products and sex toys, the women grab private moments with me. Young women thrust into surgical/early menopause fair least well sexually of all breast cancer women. With no preparatory ageing process, these women suddenly have dry vaginas, no sexual desire , body fat redistribution which leaves them with abdominal adipose consistent with the average menopausal woman. No longer can she wear with confidence the clothes that used to make her feel sexy. Painful penetration due to dry and atrophied vaginas may set up a cycle of vaginismus, a condition in which the muscles surrounding the vagina, and pelvic floor, contract on any attempt at penetration.
Consider the woman living with the after effects of gynecologic/pelvic surgery. Post surgery her vagina has shortened adding to her penetrative pain and radiation has possibly caused fibrosis of her genitals. Dry, painful genitals result.
I sell this woman a slim vaginal vibrator that will work well as a vaginal dilator. But first we have to get her vagina replenished. She takes home a box of moisturizers as well as a good silicone lubricant. Within the month I am presenting a paper to a group of oncologists, anaethetists and other specialists who have boldly included me as a guest speaker. I have been warned by the organiser that the specialists are ‘sensitive’ and have a belief that talking about sexuality to their very ill patients is invasive, unnecessary and impertinent- actually not good medicine at all. I wonder if I am being invited as people are curious about ‘Dr. Eve’ or if the organiser himself has a sexual dysfunction and this is one way of avoiding what he considers an embarrassment ‘ consulting with a specialist about his sexual health.
No matter- I am delighted for the opportunity to educate them about how to manage the sexuality of their patients with cancer. Here is the formula. I urge you as a consumer of services (in this instance I am referring to consumer of medical services) to ask your health care provider for this information and attention and do this regularly. It is your right as a woman. An ‘ordinary’ woman!
· The health care provider (HCP) is to educate both patient and partner about your diagnosis and treatment. Ask for repeated information as you cannot possibly absorb all in one sitting.
· Expect to be asked from the outset about your and your partner’s pre-treatment sexuality/sexual dysfunctions.
· HCP is invested in promoting couples’ mutual coping and support processes which includes referring you for support from rich resources the CANSA Association has to offer.
· HCP must discuss specific therapies that address sexual and body image concerns. The seed must be planted in your head and when you feel ready to ask about wigs, dilators, vibrators and lubricants, or your partner’s sudden erectile dysfunction, you know your HCP is available for this conversation.
Next month is dedicated to men and prostate cancer.