By Aasma Day
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‘I Was Told It Was Women’s Problems’: Meet The Ovarian Cancer Patients Who Fought For Diagnosis And Treatment
Thind was rushed into hospital, where 11 litres of fluid were removed from her abdomen, before she underwent numerous tests and scans. When the doctors realised it was cancer, they removed her left ovary, appendix and fallopian tube.
“They wanted to do a full hysterectomy but I desperately didn’t want this,” she says. ”I was only 33 and wanted to have children. So they shut down my other ovary and I went into early menopause.”
Little could she have imagined what other challenges lay ahead.
Thind, a former primary school teacher, who is now a writer and poet, had six months of chemotherapy, followed by physiotherapy to begin her recovery.
“Having ovarian cancer changed my world. It shattered me and I felt like I was living with constant fear.” she says. “There was always this little voice wondering if I did the right thing by not having a hysterectomy.”
Three years after her initial cancer diagnosis, in April 2019, Thind had fertility treatment to freeze her eggs and managed to secure eight viable eggs. All the while, she was having regular scans to check that the cancer had not returned.
By November, specialists told Thind they weren’t happy as the cancer markers were high. Then in February this year, she was told there was cancer in her remaining ovary and that they needed to get rid of it. She was “absolutely devastated”.
As a woman, I didn’t want to lose my periods, my fertility and my womanhood as it is part of my identity. But I knew I had to have it done.
This time, it wasn’t only the doctors advising a hysterectomy. Thind says her husband Peter, who she describes (alongside their dog Ghost) as her “rock”, was also worried for his wife, because his own mother had had breast cancer and then ovarian cancer and died of it 10 years ago. However, he realised how strongly she felt against having the full operation – and supported her decision.
“I wanted to keep my womb as I still wanted to have a baby using my frozen eggs,” she says. “I knew the ovary needed to go and that was heartbreaking [enough]. As a woman, I didn’t want to lose my periods, my fertility and my womanhood as it is part of my identity. But I knew I had to have it done.”
It was then the coronavirus pandemic hit.
Thind was booked in for surgery to remove her remaining ovary in May, during the height of UK lockdown, making a stressful situation even more challenging.
Before going in for her surgery, Thind had to have a Covid-19 test, which was negative. However, the hospital gave her a letter warning her that there was a risk she could get coronavirus while in hospital and be put on a ventilator.
The hardest thing, she says, was not being able to have her husband by her side or any visitors, due to the strict lockdown measures in place.
Doctors had warned that if something went wrong during the surgery, they might have to do a hysterectomy anyway. The prospect of waking up to this news without her husband there to support her frightened Thind.
Luckily, the operation went smoothly – she didn’t lose her womb and the care she received was excellent, she says. Even so, the experience felt “surreal”.
“You weren’t allowed to wear a dressing gown and slippers and I was wheeled into theatre just wearing the hospital gown,” she recalls.
“The hospital was like a ghost town – I had the bay to myself and there were only about seven people on the whole gynaecology ward. Unless you needed something, you were left to your own devices. I received great care in hospital, but it was gruelling trying to recover in such a lonely way.”
Despite the warnings, Thind didn’t contract coronavirus while in hospital having her surgery, but three days after her first chemotherapy session in late June, she started feeling breathless – and was re-admitted for a test. It came back positive for Covid-19 – another blow on top of everything else.
“It is hard to say where I got exposed,” says Thind, who believes she could have contracted the virus from anywhere. “The week before I went into hospital, I went to Asda wearing a mask. Or I could have got it from my husband as he was going to the pharmacy to get medication for me.
Regardless, she went straight into quarantine. “I isolated at home for a week and my husband isolated for 14 days. I had chest pains and felt tired and dizzy. But luckily, I recovered after about four or five days.”
Thind feels doubly grateful for the speedy recovery, knowing that coronavirus disproportionately affects people from Black, Asian and ethnic minorities – and that it could have seriously impacted her cancer treatment.
“I had a lucky escape as the chemotherapy kicks in after about seven to 10 days so fortunately, my immune system hadn’t weakened.”
Cancer is still stigmatised in the Asian community, says Thind, with many people unwilling to talk about it or seek help soon enough.
“They call it the silent killer as it is often caught too late,” she says. “I have a distant aunt who had ovarian cancer but she was too ashamed to go to the doctor until it was too late and she ended up dying of it when she was in her 40s. Although I didn’t experience any symptoms, I was very lucky that my ovarian cancer was caught so quickly.”
“I want the Asian community to realise that cancer isn’t something you should hide or brush under the carpet.
There were members of her family who wanted to “keep it quiet” when she was diagnosed. Instead, she has become something of an ambassador – even taking part in a fashion show for the ovarian cancer charity Ovacome.
“I wanted to raise awareness and for the Asian community to realise that cancer isn’t something you should hide or brush under the carpet,” she says.
Nevertheless, the double whammy of cancer and coronavirus have left her emotions “all over the place”. As well as support from Macmillan Cancer Support and ongoing therapy to deal with the impact of all this on her mental health, she is using writing and poetry as an outlet, and published her first collection of poems, The Barging Buddhi, earlier this year. Thind’s writing covers a range of themes from religion and gender, to cancer… and family.
“I am still desperate to be a mum,” says the 37-year-old. “I’d like to give it a year for my body to recover and get healthy and then I’d like to use my frozen eggs to have a baby. Hopefully, this will happen. I’m determined not to give up in my quest to have a child and become a mum like I’ve always wanted.”
What would have been a difficult period of her life has been magnified by Covid-19, says Thing, but she remains resolved on recovery.
“I just want life to get back to normal. Everyone is in the same boat, but I am in a slightly different boat which is further out in choppy waters.”