The beginning
The discovery of Hayley’s first cancer came in November 2017, straight after a different kind of health complication – the tragic still birth of her first child at 36 weeks. During the pregnancy, Hayley had struggled through pains and discomfort which she put down to the baby’s position in the womb. When the pains continued after the birth, she went back to her doctor. A series of scans confirmed her doctor’s concerns: Hayley had 3 – 4 tumours across her abdomen, and was diagnosed with stage 2 follicular lymphoma (borderline stage 3).
In February 2018, conscious that she had lost a child only three months prior, Hayley’s doctor referred her and Ben for emergency fertility treatment which, given the tumours in Hayley’s abdomen, turned out to be quite a painful procedure. Fortunately, four of Hayley and Ben’s embryos were saved and three days later, Hayley started her first round of chemo.
Being 34 at the time, Hayley reflects on her feelings of isolation as one of the only young people in her treatment unit.
“It was very strange in hospital as I only saw one person around my age. I felt like it was wrong that I was there because I didn’t have anyone to look at who was in the same situation as me, that I could relate to. The older people would give me a smile that felt more like pity…or sadness.”
While Hayley’s treatment was only once every two weeks, the symptoms were painful and ongoing, particularly as her chemo drugs became stronger.
“One of the drugs made my hands really tingly and painful - it can affect all your nerves. You’re wiped out when you get home. One drug makes your bones ache, all down the back of my neck and jaw. I was also taking steroids for the first three days after sessions, which have an awful taste that you just can’t get rid of, so I had anxiety around that too. I spent so much time in bed.”
While very small traces of cancer cells were still present, six weeks after the completion of her chemo treatment, Hayley was classified as ‘in remission’, and would continue to see her doctor for checkups every three months, for five years. She also went onto immunotherapy maintenance every six weeks, over two years, for an infusion.
“The immunotherapy was training my body to recognise cancer cells if they were to come back”
Another bout of bad luck
In March 2019, Hayley and Ben once again had their eyes set on trying for a family, which would normally be safe a year after chemo. Another PET scan, however, stopped them in their tracks.
“They found cervical cancer. I had some symptoms, such as bleeding after intercourse, but I’d put it all down to my body just not being ready after my treatment. It was really upsetting as I had no idea these were symptoms. I was due for a cervical screening when I was pregnant, but it had been delayed until after the birth. This got forgotten when the lymphoma was discovered. If I’d had the test, they may have found the abnormality”
Hayley was an unlucky case - her previous PET scans had missed the tumour in the cervix given its proximity to the bladder, which can sometimes get overlooked. Given the placement of the cancer and its growth into the wall of her cervix, she was told she would have to undergo a radical hysterectomy. They couldn’t risk leaving anything behind.
“I had to decide there and then if I was happy for them to do that, and say goodbye to any chance of carrying a baby. It was horrible – my husband, doctor and the nurse just staring and waiting for me to say yes. It was a very sad, dark moment for all of us.”
When describing how she coped through these difficult times, Hayley said keeping a sense of humour was everything.
“…I really had to develop some black humour to get me through. It was going to be my birthday when they’d do the hysterectomy surgery, so I made a joke about getting rid of periods as a present. The emotions and anxiety can be very intense, so humour helps to provide some relief”
Hayley’s six-month recovery from surgery was long and arduous – both physically and emotionally.
“…it was so painful and I wasn’t allowed to walk for very long or lift and do normal tasks. One of the hardest things is just not being able to see family – not having a person down the road I can just see has been so hard. Even now a year on, the area around the scar is still numb and my tummy remains swollen.”
The latest chapter
With her body still in recovery from surgery, and bushfires raging across the country, Hayley deferred her next gynecological oncologist appointment to March 2020. When she went in for her normal checkup to have her surgery wound examined, Hayley’s doctor found a nodule.
“The look on his face was unbelievable. He took a biopsy there and then and got the result back for me next day. It was confirmed that they were same cells as before.”
Days later, Hayley was faced with the devastating reality of another cancer diagnosis. This time she would need radiotherapy – both external beam and brachytherapy which would give a higher, more concentrated dose of radiation to a point in the tumour.
And to make life harder, the COVID-19 pandemic had well and truly hit Australian shores.
In her first appointment, Hayley describes how her new oncologist was wearing a mask to inform her of the devastating news that, after the radiation treatment, she would no longer be able to produce eggs.
“It made it so hard as I couldn’t feel or see empathy in his face. Still, he was great and gave me the option of delaying treatment so I could save more eggs. Sadly, fertility doctors were all on lockdown at the time as elective surgeries were on hold. My fertility doctor considered putting me through for an emergency egg retrieval, but said my chances of success would be very low due to the effects of chemo. He and the gynecological oncologist advised me against delaying my treatment and so it was confirmed an egg retrieval was not going to happen and I would start treatment on May 4.”
Today, Hayley has gone through her entire course of external radiation treatment. The radiation, she says, made her very tired and fatigued, and weakened her immune system significantly. With the risk of COVID-19 ever present, Hayley has had to self-isolate for the second time in her life.
“I pretty much went into isolation for the six months of chemo the first time I had it in 2018. One evening I ended up with infected eyebrow follicle which swelled up and I had to go to Emergency where they put me in a separate room. I didn’t see people or have visitors – all while grieving the loss of our child and coming to terms with my diagnosis.”
This time round, Hayley is acutely aware of the risks she faces as an immunocompromised cancer patient, particularly in the climate of COVID-19.
“So, I'm at high risk and I’m fully isolating. I basically just go the hospital, take the dog for a walk and stay in. I can’t have any visitors. In regards to COVID-19 – I worry about what other people are going to do. Will they care that much how their behaviour affects other people? Most seem to be complacent. It frightens me that people are going to forget, even though it’s still very real. At the moment I don’t feel safe, and I get nervous going to the shops”
Three years on from her first cancer diagnosis, Hayley has just completed her most recent radiotherapy treatment after a mammoth 25 daily sessions. She will continue to undergo two invasive sessions of brachytherapy and immunotherapy as well as regular tests to check her progress, but her and Ben are now focusing on looking for a surrogate to get their plans of starting a family back on track.
