After my first round of chemotherapy, I decided to document my own hair loss, to face it without make-up, without trying to make this somehow a “positive” life- affirming anything. This is cancer. This is what chemotherapy does to you. This is the reality.
A few months ago, I went to see my GP for what I thought was a very minor urinary infection after finding a few spots of blood in my panties. “Not coming from there,” he said after the test results came back. I’m a post-menopausal 57-year-old woman in fairly healthy condition. It shouldn’t have been coming from anywhere else, so of course I jumped to the worst case scenario – was it cancer? Only one out of ten cases of unusual vaginal bleeding after menopause is caused from cancer, he reassured me. It’s probably nothing serious, possibly hyperplasia, very common in middle-aged women, but best to get it checked out.
So he sent me for a sonogram. The technician confirmed I had hyperplasia, but just as my GP did, assured me the lumpy bits could be something as simple as polyps, I shouldn’t worry too much. Everything else looked fine, no cysts on the ovaries, nothing unusual. So I was referred to a gynaecological oncologist and surgeon at the Wesley Hospital in Brisbane, who scheduled me for a hysteroscopy and diagnostic D&C the last week of February. On March 1st, I sat down in his office and exchanged brief pleasantries before he showed me the photos that looked like someone had stuffed me full of fuzzy spaghetti. “I’ll just get straight to it,” he said. “It is cancer.”
At that moment, although I wasn’t aware of much other than the prickling sensation that blossomed on my face and flowed down with sickening quickness over my shoulders, my life as I had ever known it was over. And it just kept getting worse.
Like most women, I do self-exams and scheduled mammograms to check for breast cancer, and have a regular PAP smear. I have a pink ribbon pinned on a handbag, buy the annual fake daffodil from the Breast Cancer Society, as my mother died of breast cancer. There are regular fun runs and bra decoration events and news programmes and television ads for both breast and cervical cancer screening, usually featuring laughing, happy women. I’m well aware of the signs and symptoms of those sorts of cancer.
I’ve never seen any publicity about endometrial cancer despite it being the most common gynecological cancer both in the United States and around the world, more than cervical, ovarian, vaginal and vulvar cancers combined.
The median age for endometrial cancer is 62, although 25% of cases are women under 50. In 2013, an estimated 49,560 new cases were diagnosed in the United States, and 8,190 women died from it. PAP smears don’t pick it up, unless it’s already quite advanced. There are no current routine tests, like regular mammograms or PAP smears, to find endometrial cancer. The first sign the vast majority of women have is blood spotting.
But there are certain symptoms, which had I known to look for them – or had they not been written off as something else – might have clued me in a lot sooner. When I first became intimate with my new partner, sex was surprisingly painful. “Oh, your cervix is just a bit prolapsed,” the nurse who did my previous PAP test told me. “Just do pelvic floor exercises.” So I started adding Kegel exercises to my daily routine. I had several bouts of watery discharge that smelled a bit funny, and was given Canesten cream for thrush. I had back pain and the occasional achy tummy, but never gave it much thought – it’s just part of aging. A few years ago, I could dance two hours straight four to five times a week, I had a lot of energy. Not so much in the last couple of years, tiring easily, but just wrote that off as being past my best-by date as well. I had to pee four or five times a night, I’d never given birth to a child, I’d been prescribed a high oestrogen HRT before I switched to something more hormonally balanced after menopause set in, I’d gained quite a bit of weight after I stopped taking the HRT and found it hard to diet off. Separately, none of those risk factors are of much significance – but together, they added up to a much more increased risk for a cancer I’d never heard much about before.
And endometrial cancer comes in two flavours; Type I and Type II. Type I cancers are thought to be caused by excess oestrogen, are not very aggressive, and are slow to spread and account for about 80 to 90% of endometrial cancers. Type I cancers are easier to treat, have a good prognosis and long-term survival rates. Type II are “high-grade” cancers, fast growing and quick to spread outside the uterus, more aggressive, and much harder to treat. The prognosis is a lot grimmer for Type II cancer. At that point, my surgeon wasn’t sure exactly what I had – it was a “grey area,” he said, he would only know more after a complete hysterectomy, and wanted me to have that as quickly as possible.
Early the next Monday, I was on a hospital operating table, while a nurse asked me yet again for my name, my date of birth, and what I was in for. “Laparoscopic hysterectomy and bilateral salpingo-oophorectomy, along with a couple lymph nodes,” I told her. (Many years ago, I worked as a theatre nurse, I know the lingo.) “You don’t have to memorise what’s on your chart,” she told me primly. A few minutes later, the anesthetist asked me for my name, date of birth and what I was in for. This time I said, “I’m here to be spayed,” illiciting a few gasps and a strangled giggle. I’ve always had a bit of a dark sense of humour. He pushed the plunger, I tasted copper in the back of my throat and woke up a few seconds and several hours later in a hospital ward, my very worried partner sitting next to me. It took me most of the day to recover from the anaesthetics, and he never left my side.
If you have to have it done, laparoscopic hysterectomies are the best way to go. I was discharged less than 48 hours after my operation, and by Friday I was fit enough to drive again, very little pain at all. I have a nick in my navel and four little marks on my belly smaller than mosquito bites. I felt better than I had in years. That’s the good news.
The bad news is on Tuesday, my surgeon came to see me in the ward. “We got it early and we got it all,” he announced rather triumphantly. “Nothing in the lymph nodes, nothing in the peritoneum, nothing on the cervix, it’s over, you can go home.” He’s a surgeon, and no doubt one of the very best. But he’s not a histologist. By Wednesday, the news wasn’t quite so rosy. The tumours had burrowed into the uterine wall far deeper than expected and, far worse, the cancer had already metastasised to an ovary, making this an advanced cancer, Grade II, Stage IIIa endometrial Type II adenocarcinoma with squamous cell differentiation to be exact. My survival chances had just dropped from pretty much of a dead cert to a coin flip, 50/50. “Looks like you’ll have to have chemotherapy as well,” my surgeon said, somewhat off-handedly.
Like a lot of women, that probably hit me even harder than the initial diagnosis of cancer. “I’m going to lose my hair?”
“Oh, yes,” he said rather blithely. He’s young, he’s bald, he’s a surgeon. The nurse standing next to him read the horror on my face, and must have said something to him later, since he rang late the next evening after I’d gone home to apologise for his abruptness, and – probably more to the point – to convince me that this really was my only option, to please not to turn down chemotherapy for the sake of my hair.
On the one hand, I’m a realist. I knew what he was saying was right. I had no choice, if I have any chance at all of surviving. On the other... my hair has been my best asset for many years, my partner fell in love with me the first time he ever danced with this woman with blonde hair flowing to her waist. Losing my hair was far more wrenching than having redundant organs removed; I was about to lose a big part of who I am.
I went online – as does just about anyone who ever receives a diagnosis for cancer – and started researching everything I could find, along with looking desperately for an “out”, some remote chance that I wouldn’t have to sacrifice my hair for my life. The chemotherapy I began shortly after surgery is a heavy-duty mix of Taxol and carboplatin given in three week cycles – and that combination meant there was no out clause. So I looked for something that would show just how bad it would be, how soon it would happen. I found Diem Brown’s heartbreaking video, where she documented the loss of her hair from chemo – and that made up my mind. I had to cut off my long, beautiful hair, and soon.
But the difference between me and Diem Brown is that Diem Brown is not only an extraordinarily brave woman, she’s young and she’s beautiful. As terrible and unfair as it is for her to have had to suffer through this at such a young age, she is still young and beautiful, whether she’s bald or has hair down to her knees. I’m not. Nor are a good many other women just like me, stricken by cancer and stripped of their dignity and self-esteem by chemotherapy. Watching her video made me feel worse, because I knew nobody would ever be doing any glamour photoshoots of me – whether I was bald or had hair down to my knees.
So I decided to document my own hair loss, to face it without make-up, without trying to make this somehow a “positive” life- affirming anything. This is cancer. This is what chemotherapy does to you. This is the reality. I still cry over the loss of my hair, it hurt on a soul-deep level that makes cancer and the threat of death a much more intimate experience than anyone should have to face. But I don’t cry as much anymore. If that’s the price for survival, I’ve paid it gladly. There’s still a lot more to get through, some of it even worse. I lived through losing my hair, and I’m doing everything I can to live through cancer as well.
I am actually one of the lucky ones. I have the most loving man in the world, I have wonderful friends, and the Cancer Council and Choices have been immensely supportive. I have some medical insurance (more about that later!) which hasn’t covered everything, but while my medical bills have been steep, they haven’t yet been crippling. I have an excellent medical team, and Australia has the best survival rate for cancer in the world.
My only job at the moment is to take care of myself the best I can and get through this. How any woman manages without a partner, without insurance, or while holding down a job or taking care of children at the same time is unfathomable. They are stronger and braver than I could ever hope to be.
I will be writing more about this as time goes on, but for now, I offer this video to anyone like me, or who loves anyone like me, because one other thing about cancer I’ve only recently discovered is just how ubiquitous it is – affecting millions on millions of people, with all kinds of cancer, men and women both. It isn’t pleasant, it isn’t pretty. But knowing what you’ll face really does help.
I promise you, it does.
Thanks to: Terri Welsh, my camerawoman and BFF, the wonderful beauticians at FMG Hair in Margate, Queensland.