'I'm scared of what my future holds.' The reality of living with terminal cancer at 30.

Twenty-four-year-old Alisi Jack Kaufusi was working hard as a flight attendant in Brisbane when she received some devastating news.

"I loved my work and the big city nightlife," Alisi told Mamamia about her life in June 2017.

"After ignoring some strange symptoms for months, I finally found the courage to go to the doctors. I had been experiencing abnormal vaginal bleeding, pain during sex, and weight gain. I always felt bloated and tired, but as a busy and happy 24-year-old, I put it down to my lifestyle.

"The first ultrasound showed something covering my ovaries which combined with my symptoms was thought to be PCOS (polycystic ovarian syndrome) or endometriosis. But in December 2017, I was sent for a biopsy and the surgeon told me he 'suspected cancer'."

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Despite the surgeon's words and her family's concerns, Alisi says that she remained hopeful. But immediately after she woke from the biopsy, a nurse told her they had called her mum to come in and that the surgeon wanted to talk in person. 

"I knew that didn't sound good, and it wasn't. I was told I had ovarian cancer, and I was in shock. Genetic tests thankfully revealed no family history, so it was literally just bad luck."

Two weeks later and Alisi was back at the Mater Hospital in Brisbane for surgery to remove what they could see of the cancer. 

"It was supposed to take four hours, but ended up taking nine hours. I needed weeks to recover because it was major surgery not only to remove the cancer, but I had a full hysterectomy and then a bowel resection. I had to learn how to walk, talk and breathe on my own again. I realised I could not have kids, and it was life changing."

After another six weeks of recovery, Alisi went back to the hospital for her first round of chemotherapy. 

"I was still trying to recover from the surgery, so I was really sick. I don't think people understand that with chemo, it's not just the physical effects but the mental and emotional side effects. 

"My friends were enjoying their lives. They were moving forward where I felt like I was just stuck at this stop sign. I hated not having any control over the situation."

When home from hospital and not feeling too awful, Alisi tried to continue to live a 'normal' life. She had moved out of her share house and back home with her parents.

"I couldn't fly anymore, but I stayed with the same company doing reception work when I was well enough. I would occasionally go out for drinks in the city at weekends and while my family would worry about me, I just wanted to do something normal. I felt terrible anyway because of the chemo so I just would deal with a chemo hangover! Even just getting in my car and going for a drive felt so good."

Alisi in hospital receiving treatment. Image: Supplied.

By mid 2018, Alisi was in remission but it wasn't the celebration she had hoped for.

"I think I had been in survival mode for so long that I found remission really difficult. It was as if I was grieving my old life and didn't know how to adjust to my new one. I really struggled to get back up on my feet."

Alisi began studying in 2019 to move into a career in HR, while also planning a solo overseas adventure. Her cancer was still in remission and being regularly monitored.

"Work was my happy place and my three-week holiday to Florida and Miami was amazing - a real escape from cancer worries and my everyday reality. 

"But in April 2020, after a concerning blood test result, I had a scan and my worst fears were confirmed. The cancer was back but this time around it was in my spleen and pelvic area. I knew something wasn't right as I had been feeling fatigued, but hoped it was because I had been working too hard."

Alisi went straight back in for surgery to remove her spleen and as much cancer as possible before another painful recovery and a further six rounds of chemo. The added complication of COVID restrictions meant visitors weren't an option.

"It was traumatic to revisit the same situation all over again, like history repeating itself. I was very unwell, and it was awful because family couldn't come and visit me. The only thing that kept me going and kept me busy during that lonely period in hospital was studying for a diploma in business. It helped because that was an area of life I had control over. 

"My workplace was also very supportive, allowing me to go in whenever I felt well enough but I just really struggled emotionally. I reached out to Ovarian Cancer Australia for counselling which continues to be helpful."

Sadly, Alisi's cancer came back again in 2021 meaning more chemotherapy but the effects of the treatment soon outweighed the benefits.

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"I gained weight from the steroids and fluid retention. I would get body aches during the infusion and we actually had to stop chemo because the reaction was so bad. I also experienced neuropathy; a numbness and tingling in my hands that was awful."

Alisi stopped chemotherapy in November 2021, moving to a maintenance treatment to keep the cancer at bay. She focused on her study in HR and trying to enjoy time with family and friends over Christmas. She graduated before finding out in February 2022 that the cancer had again progressed.

More chemotherapy followed before Alisi eventually made the difficult decision to stop her chemo treatment.

"I was just tired of being sick. I spent most of my days vomiting and feeling sick and I thought well, do I keep on feeling terrible like I had been for years? Or do I want a quality of life? And I chose my quality of life.

"The more I did chemo, the more my body became resistant to it."

It was towards the end of 2022 that Alisi had some good news and was successful in gaining her dream role as a HR administrator.

"I was so happy to get the job and just focus on my work but then just before Christmas 2022, I found out my cancer had become non-curable. I had only been off chemo for three months and it had progressed in a very aggressive way. It had gone from stage three to stage four terminal cancer because it had moved from the original site to lymph nodes in my neck. Now our focus is on treatments - not to cure the cancer - but to prolong my life."

Alisa says that while a friend inspired her to write a 'time list' to give her things to look forward to, the reality of living with an incurable disease is dark.

"I struggle. Honestly, I'm not okay. You know, there are moments when it's all fine, great even. And then there are moments where I'm really in a dark place. I'm scared. I'm scared of what my future holds. And I question my mortality every day. It feels like I'm walking on death row.

"I wrote 71 things down on my list to try and give me things to look forward to and I got to tick a couple off recently like horse riding on the beach with my sister which was really therapeutic. But the reality is I wrote that list because I have incurable cancer and while it gives me hope, it also makes me really sad. Because at the moment I am back in treatment again and I'm too sick to travel or do many of the things I want to do."

 Alisi horse riding on the beach with thanks to the Hendra Pony Club. Image: Annette Dew. 

Alisi's continued connection to her support network of family and friends has been her main source of strength and joy.

"I know it has been difficult for my family, my mum and dad in particular as they are my number one supporters. But we are all very connected and I have good friends that are like family too."

While she focuses on getting through this latest round of treatment so she can tick off more items on her 'time list' like visiting the pyramids of Egypt, Alisi continues to be a fierce advocate for raising awareness and funds for ovarian cancer.

"Ovarian cancer doesn't discriminate. 

"Women need to know the signs and the symptoms include things like fatigue, bloating and unusual vaginal bleeding. You know your body best, so even subtle symptoms or signs you might be unsure about? Just go to your doctor and if you are still not sure, then get a second opinion. If I had gone to the doctor earlier, I probably wouldn't be in a situation that I am in today and that is my one big regret.

"No woman should have to go through this and hopefully in the future, they won't have to."

To learn more about Alisi’s 'time list', visit https://www.gofundme.com/f/alisis-timeless-list

February is Ovarian Cancer Awareness month. To find out more about the common symptoms of Ovarian cancer or to donate money, visit the Ovarian Cancer Australia website.

Feature Image: Supplied.