Silent No More
When Tash Crosby was diagnosed with ovarian cancer, it seemed like she was all alone. Now she is working to raise awareness and arm women with life-saving knowledge about this ‘silent cancer’.
The day after I turned 36, the call came from the hospital. The woman on the other end of the phone asked if I could pop in. “When?” I asked. “Now,” she replied. I dashed out of the classroom where I was helping to teach children with special learning needs, and ran straight into the deputy principal – and then I burst into tears. I didn’t know what they’d say at the hospital, but I was sure it couldn’t be good news.
My father is a part of the Behaviour Crisis Response Service for Education – a team that’s called in when there has been a traumatic event like a suicide. When I went to university as a mature student, I began to follow in his footsteps, and I graduated with a Bachelor of Education. That’s how I came to be working as a resource teacher in learning and behaviour support when my life path changed.
HOW IT ALL BEGAN
The first time I had a bad period with terrible pain, I was a teenager. I told myself to harden up. I thought it was just the norm – but it turns out I had an endometrial cyst and needed laparoscopic surgery to remove it.
So in 2016, when I had another weird period and the pain felt a bit different, I thought it had grown back. My doctor sent me for an ultrasound, and they did indeed find another cyst. I remember the nurse saying, “At least you know you’re not crazy.”
The previous time I’d waited five months for the cyst to be removed. But now I was too anxious and it was very painful. My doctor rang the hospital and said, “I want to send my patient in.” They refused. Over the weekend, I felt awful so took myself to Auckland Hospital. They conducted blood tests, kept me in overnight and then sent me home. The next week I went in again, then Mum took me in for a third time when I started getting a shooting pain down my leg. I started to cry, appealing to the young doctor: “I know there’s something going on.” She sent me to get an MRI.
Half an hour after the call that day at school, I was waiting for the consultant in a hospital room with two beds, a chest of drawers and a full lounge. To me it seemed like a family room where people go to die. I wondered, ‘Am I that far advanced?’ I was so scared. I paced up and down while Mum sat on the bed. Finally the doctor arrived. She knelt in front of me and said, “We think you have ovarian cancer.”
When I began to research it, the statistics looked grim. Ovarian cancer is the deadliest of the five gynaecological cancers (ovarian, cervical, vaginal, vulval and uterine) and 85 per cent of women are only diagnosed in the late stages. But we didn’t yet know what stage I was at, or whether I even actually had cancer. The surgeon would remove the ovary and ‘tumour’ to assess it.
The five weeks leading up to that operation were a blur. I kept working but flipped rapidly between emotions. One day I’d think, ‘It’s going to be fine’; the next I was imagining I’d be dead within six months. I followed a diet that cut out salt, sugar, red meat and dairy. It gave me a sense of control that was good for my wellbeing. I wanted my body to be in the best condition to get over the surgery.
SET FOR SURGERY
On November 16, 2016, they removed my right fallopian tube, right ovary and the suspected tumour. My family gathered around, full of positivity that my ordeal was over, but I just couldn’t believe that was the case. I had to wait a hellish two weeks to get the biopsy diagnosis. Mum and Dad drove me to the surgeon’s office, where he delivered the news: it was cancerous. I was filled with conflicting emotions, but I couldn’t waste time feeling sorry for myself. I had to focus on the next step.
A second surgery involved a laparotomy – where they cut into the abdominal cavity for a total pelvic clearance (the removal of the pelvic organs). Only then could they tell me how far the cancer had spread. It was scheduled for the new year – more waiting. The day before I was due to go in, I received a call. Did I want to postpone the op for a month so they could do a procedure that would save the eggs in my remaining ovary? No way! I knew that it was a fast-moving cancer, and every day was vital. “See you tomorrow,” I told them.
I was wheeled into the operating theatre in a gown and hairnet, where five professionals were waiting to cut me open. I was suddenly in tears, and the doctors and nurses huddled around and gave me a hug. At least now these people who were about to become so well acquainted with my insides had a human face. I woke up in menopause.
The nurses on Ward 97 of Auckland Hospital are angels who deal graciously with the most traumatic stuff. They’d give me massages in the middle of the night when I was in pain and hug me when I was feeling sad. They got me through. As did my mum; she was a rock. She managed the whole awful situation with such strength.
Fortunately, the cancer had yet to spread to my lymph nodes. I finally had an official diagnosis – Stage 1, Grade 1 ovarian cancer. The stage refers to how far progressed the cancer is; and the grade describes the appearance of the cancerous cells. It was ‘good’ news, technically, but not straightforward. During the removal of
the tumour, it had ruptured – the only reason I had to have chemotherapy. And during the pelvic clearance they had also found a low-grade uterine tumour which didn’t show up on the MRI – so you could say the ovarian tumour saved my life.
I was lucky that the cancer was caught early on. That doesn’t happen often. I trusted my gut and still think, thank goodness for my stroppiness. It served me well – and I embrace it now. Women shouldn’t feel silly about being stroppy, or demanding to have their health concerns taken seriously.
CREATING A COMMUNITY
During my six months of chemo, I had no community around me. If you get breast cancer, there’s so much support – people are fundraising, doing walks and runs – but where was everyone with gynaecological cancer?
It was quite a lonely time. I had a cancer no-one seemed to care about. That’s madness, because 1,000 women are diagnosed with a gynaecological cancer every year in New Zealand. Four hundred of those die each year, and one woman dies every 48 hours from ovarian cancer. That’s higher than our melanoma rates, higher than our road toll, but no-one talks about it.
I was so lucky to have supportive friends and family, but was mindful of the stress I was putting on everyone: I didn’t want to be the dark cloud. So I looked for someone going through the same experience to vent to. That was hard, because women with ovarian cancer are mostly quite far progressed. I started being quite vocal about my situation and I turned to Instagram, where I discovered two women – one in UK and one in the US – whom I became really close to. We all had chemo on Fridays and would keep in touch about how we were feeling.
After a while, I realised that I had a lot of knowledge – and I wanted to keep sharing it. I was determined that anyone else who had ovarian cancer would be caught early too. I became an ambassador for Look Good Feel Better (a free programme that teaches cancer patients how to manage the appearance-related side-effects caused by treatment), flew to conferences in Fiji and spoke at Government House. I even went on talk shows. I wanted to get the word out about what has remained such a silent cancer.
By this stage, I had amassed a global community through social media. One day I wrote on Instagram, “I don’t really know where I am going but that has never stopped me before”. I look back at that post as the birth of Talk Peach, a charity that helps to raise awareness of cervical, ovarian, vulval, vaginal and uterine cancers. It also aims to up-skill the public and health professionals on these killer diseases, and empower women to really take ownership. I am passionate about arming women with knowledge to help save themselves and their family from what is often, but doesn’t have to be, a late-stage diagnosis.
I finished chemo in July 2017. I lost my hair, which was straight and brown at the time – but, when it grew back, it was full of curls!
I am an ideas person but also a realist so, while I know I can never have children, I don’t mourn it. I was genetically tested for the BRCA gene (which increases the risk of breast and ovarian cancer) – and I didn’t have it. The women in my family were all very relieved about that.
WHAT THE FUTURE HOLDS
For the last 18 months I have been back in my educational role, but on Fridays I work on Talk Peach. In June this year, the website launched. It’s an educational site where you can find out about the signs and symptoms of gynaecological cancers, as well as the risk factors, how you are diagnosed, and what treatment looks like.
But the best help you can get when you have a gynaecological cancer is from someone who has been through it before – so phase two will be to develop a support base. Through Talk Peach, I hope to fill a gap that I needed for myself.
To find out more about Talk Peach, head to talkpeach.org.nz
“It was quite a lonely time. I had a cancer that no-one seemed to care about.”