'At 27, my sister died of ovarian cancer. This is what she'd want you to know.'

Growing up, Elsa and her younger sister Kristen were best friends.

"Although there was a five-and-a-half-year age gap between Kristen and me, we were inseparable," school librarian Elsa tells Mamamia.

"She was just very mature for her age. She fitted in really well with my friends and we did everything together. We both loved to travel and strangely she always had this sense about her that life was short. Kristen had a lot of energy and she loved life."

The sisters shared a dream to live overseas, but it was Kristen who got them organised with two-year visas for the UK.

"I must have been about 25 at the time and I'd finished university and Kristen was just 19 when said to me, 'Come on Elsa, you're getting old, let's go!"

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They moved to London at the end of 2012 and spent the next year busy, but living out their dreams. They got a pet chihuahua called Henry, and jobs in their chosen fields while also studying online. They took Henry on holidays to Europe, enjoyed exploring their new city, making friends and Kristen even celebrated her 21st birthday as a Londoner. 

Life was good until sometime towards the end of 2013 when Kristen began experiencing some mild symptoms.

"She would feel tired and bloated but as an otherwise young and healthy woman, she put it down to a bad diet or her mild lactose intolerance. Never once did either of us think it was serious. It was unusual because most women experience persistent pain in the abdomen but for Kristen, she woke up one morning with such sharp pains in her abdomen she even vomited a few times. There was a GP clinic up the road, so we went along to get her checked out."

In London with Henry. Image: Supplied.

Elsa says that at first, the GP did a pregnancy test to rule it out and then thought that because of the location of the pain and its intensity in an otherwise healthy woman, it could be appendicitis. Kristen was admitted to the Royal London Hospital and scheduled to have her appendix removed as soon as possible.

"We called our parents and thought it was all a bit of an exciting drama, to be honest," Elsa recalls.

"After the operation things didn't go as expected. The next morning when the nurses and doctors did a ward round, the information was vague. We found out later that when they opened her up, they couldn't even see her appendix because there were so many tumours. They took a biopsy and wanted her to have an MRI to be certain of the exact cause."

Kristen went home still feeling quite sore because of the surgery but tried to go back to normal while waiting for an update. It was a cold November evening at 5 pm when Kristen received the phone call no one wants.

"They asked her to come in first thing the next day and to 'bring a loved one'. We worried about it that night and thought maybe it was a fertility issue.

"When the doctor broke the news it was as if it was in slow motion. I heard the words 'ovarian cancer', and the world stood still. Kristen told me later that I actually screamed, but I don't remember. Then I just had millions of thoughts like, 'Why?', 'How did this happen?' and 'How could we not have known?'"

Kristen was told she had stage three ovarian cancer because it had spread outside of her ovaries and other organs were involved. The sharp pain that she felt on the morning she went to hospital was because the cancer had grown around her bowel, and was constricting it. 

"They referred Kristen to St Barts Hospital to meet with gynaecological oncology specialists. We were told that both chemotherapy and surgery would be needed and Kristen decided she wanted to stay in the UK for treatment rather than go home to Brisbane. 

"It was all very quick and the NHS was fantastic but it was also an information overload! They gave us an anatomy lesson explaining what that MRI had shown about where the tumours had spread what organs were involved and what organs they may or may not remove. It was just so overwhelming."

One of the first challenges was finding out Kristen's tumours were estrogen sensitive and there was no way to spare her reproductive system. She had to have a full hysterectomy.

"We really put that to the side because there was no time or space to grieve the implications of losing fertility options. The surgeon and medical oncologist said that, unfortunately, the rare type of ovarian cancer Kristen had was slow growing, and not very responsive to chemotherapy.

"They didn't know if the chemotherapy would treat it at all, and the cancer was too extensive not to do surgery. They needed chemotherapy to shrink all the tumours in order to make surgery viable. 

"I asked, 'If the chemo didn't work, how long has she got to live?', 'Would she even make it back to Australia?' As much as she wanted to stay for treatment, Kristen didn't want to die in a hospital in London. But the doctors said if it didn't work she would still have months left to live."

Image: Supplied.

Their mum came from Australia to live with them and help Elsa care for Kristen as she began her first round of three lots of chemotherapy.

"We took turns at the hospital and I carried on working," Elsa recalls.

"It wasn't until the second round of chemo had finished that they did a scan to see how things were going. There was a lot of waiting and a lot of unknowns. The unknowns were always the worst part - waiting for scan results time and time again.

"But against all the odds, the chemotherapy worked just enough so that Kristen could have the lifesaving surgery. It took 11 hours and her entire large bowel was removed which was debilitating. Afterwards, the surgeon said they would never normally remove so much from a healthy young woman but that there was no choice in her case. She spent a long time very unwell in ICU."

As her strength returned, Kristen began the next three rounds of chemotherapy which ended in April 2014. Six months had passed from the diagnosis to her final round of chemo.

"It was an ordeal but doctors declared her as having 'no evidence of disease' or NED. It was good news but so much had changed for Kristen. Her body, her life and she had experienced such trauma. During her time in the hospital, she blogged and shared her journey on social media and found out more about ovarian cancer. It was then we realised just how unfair outcomes were for women with ovarian cancer. It is hard to detect, not easy to test and survival rates are low compared with other cancers. 

"She reached out to UK Ovarian Cancer Action to get more involved. She put both of our hands up to volunteer at events wherever and wherever they needed us. And eventually, they asked her to be a guest speaker." 

After missing out on so much time in London, the sisters decided on a new adventure and applied for work visas for Canada. 

"We knew there was an 80 per cent risk of recurrence and doctors told Kristen to enjoy her life in the moment and do the things she wanted to do as soon as possible.

"We set off for adventures in Toronto with our dog Henry and had a wonderful six months before Kristen's scan showed tumours had returned and the cancer was in her lungs."

Elsa and Kristen returned home to Brisbane and the new oncologist put Kristen straight onto a clinical trial. While it didn't get rid of everything, it helped. 

For the next five years, Kristen was on a continuous set of different treatments and every three months she had a scan to monitor the tumours. 

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The girls continued to work and book fun experiences together when they could. They linked up with Ovarian Cancer Australia to continue their advocacy work and in February 2019 they took a trip to Canberra where Kristen gave a speech to parliament. 

"She could hardly get out of bed that day but she so desperately wanted to make a difference she spoke and made an impact.

While she fought as much as her body allowed, Kristen died in December 2019, aged 27. 

One woman dies every eight hours from ovarian cancer in Australia alone. Elsa hopes that Kristen's legacy will be to help make this statistic a thing of the past.

"I have to believe that Kristen's short life, and her hard work, were not wasted. Women are dying too often from ovarian cancer and it doesn't have to be this way. But more awareness around early detection and more money for research is needed. As Kristen's caregiver and big sister, I will keep on doing what I can but it is so hard without her. 

"As the years go by, the grief feels harder because it has been so long now since I've seen her. She was always with me and it seems impossible that we won't travel or do anything together again."

Sisters Elsa and Kristen. Image: Supplied.

Ovarian cancer is Australia’s deadliest female cancer, with a five-year survival rate of just 49 per cent. The 10-year survival rate is 36 per cent.

CEO of Ovarian Cancer Australia, Jane Hill, says stories like Kristen’s are all too familiar.

“Due to the deadly nature of ovarian cancer, the army of survivors who can advocate for change is much smaller than what we see with some other cancers. At Ovarian Cancer Australia, it’s our responsibility to carry the courage of these brave women and demand change on their behalf,” says Hill.

Ovarian cancer is a difficult disease to detect – there is no early detection test, and the signs and symptoms are often vague and mimic other conditions.

“In the past 20 years, the five-year survival rate for people with a breast cancer diagnosis has increased from 73 per cent to 92 per cent. We want the same for ovarian cancer,” Hill says.

“To continue to improve treatment options and create better outcomes for people like Kristen, we need large-scale and long-term funding for research projects. We need high-quality care and treatment options that are affordable and accessible. At Ovarian Cancer Australia, we’ll keep fighting until the narrative of ovarian cancer is permanently changed.”

In addition to their advocacy services, Ovarian Cancer Australia has a range of support services, including specialist ovarian cancer nurses available for free to people affected by ovarian cancer across Australia, no matter where they live.

Monday, May 8 is World Ovarian Cancer Day, donate to Ovarian Cancer Australia to remember women like Kristen and their families. 

Every donation helps Ovarian Cancer Australia fund their essential support services, fight for more research funding, greater access to innovative and affordable treatment options and, ultimately, create better outcomes for all people impacted by ovarian cancer.

To support, visit ovariancancer.net.au or call 1300 660 334.

Laura Jackel is Mamamia's Family Writer. For photos and links to her articles follow her on Instagram.

Feature Image: Supplied.