As at June 2019, I am living with Stage IV incurable metastatic breast cancer. I am 55 years of age. I am an active and passionate lobbyist for voluntary assisted dying legislation in Australia and across the world. This is my story.
My introduction to the world of cancer and incurable diseases, and all that they bring, came in 1974 when I was 11 years of age. My Mum, then 36, had been complaining to her GP about a very painful and growth on her inner thigh. The GP dismissed it as a cyst. After 12 months, when she became an emergency patient as a result of the pain, further investigations saw her world collapse (and my father's and mine). Her “cyst” was a serious, life-threatening secondary cancer. The specialists were not able to find the primary cancer at that time, but it would reveal itself months later – in her breast.
She was re-admitted to hospital where the surgical team wanted to perform a mastectomy. Still reeling from the horror of the surgery to her leg (most of her upper inner thigh had been removed, the other leg was excruciatingly painful as a result of a skin-graft), she refused and only permitted a lumpectomy.
As she recovered from the surgery, she was subsequently referred to the Chemotherapy Department of the main hospital. My mum became a 'guinea-pig' for chemotherapy (pioneered by Professors Turner & Watson) – a grueling treatment regime she would receive for three years. She was admitted as an in-patient of the hospital for three days, every two weeks. We would visit and she would be lying there motionless, except to lean over the bed to access the bucket to allow her to vomit. She lost her hair within the first week – her treatment so brutal that her hair would never grow back – even years down the track. After each treatment she would return home and spend the next two weeks recovering from this dreadful treatment regime, flat-out and in bed.
The rest of the “guinea-pig” chemotherapy group died (from the treatment). For some reason, my mother, a true warrior, probably as a result of her growing up as an orphan, in an orphanage, and always having to stand on her own two feet, made it but at a huge cost. Most of her upper inner thigh had been removed, the other leg was excruciatingly painful as a result of the skin-graft that had been performed. The lymph nodes in her leg were removed resulting in what was to become a life-time of ongoing lymphoedema where, by the end of the day, her ankle would be the size of her upper thigh. It took years for her to reach a reasonable life of “quality”. Routine blood-tests would reveal problems with her liver – she would be accused of drinking alcohol – my mother was a dancer, didn’t drink and looked after her body. Such was the toxicity of the treatment.
As an 11 year old, I was allowed to leave school at lunch time to come home and relieve my father of his care responsibilities so that he could go to work.
My teenage years were spent as a carer. My mother openly said, at the time, and years later, she would never, ever be willing to go through that journey again, that she would end her life rather than experience that journey.
In 1987, my father was diagnosed with non-hodgkins lymphoma. He was told “five years, yes, 10 years, no”. For five years he received tablet chemotherapy. He would be unwell during each cycle, he would have to have blood transfusions, but overall, he did have quite a good quality of life for five years, until his treatment stopped working and we were told that there was nothing further that could be done.
In my father’s last six months we watched a 6' 2” solid gentleman, reduced to a 40 kg shell. A truly private “old-school gentleman”, he was horrified to lose his dignity by virtue of mum trying to bath him, not being able to lift him and having to call on me to come and assist to help get him out of the bath. He spent his last six months spiking fevers and having to be rushed into hospital. I had only ever seen my father cry once and that was when mum was in hospital. He would cry and plead with me not to take him back into hospital – he just wanted to stay at home. During one hospital stay, we arrived to visit, to find him lying in bed, in his own faecal matter, clearly disoriented and confused. It took days for him to regain to come out of what was a temporary “vegetative state”.
Months before he died there were many mornings, where I expected to find him dead in his bed. Two months before he died, I caught him looking in the mirror one day – at his skeletal frame and face. I asked him what he was doing. He said “Some days I question my faith.”
In September 1992, he was at home, sitting in the garden in the sun. He got up from the chair and then fell over. His leg had literally snapped and broken with the effort of getting up.
He was admitted to hospital where he spent the last two weeks of his life in agony until the day he died of septicaemia – a complication of his cancer.
In 1997, as part of routine scans (because of my mother’s history), I was diagnosed with a Stage 3 aggressive breast cancer tumour. I was 32 years of age and my two children were two and four. I underwent a lumpectomy, followed by 35 sessions of radiation.
In 2002, at what should have been the successful five-year success mark, a new breast cancer tumour was found in the same breast. After numerous procedures, including needle aspirations and biopsies, I underwent my first mastectomy.
In 2004 I underwent a prophylactic mastectomy of the remaining breast to give myself the best possible chance of defeating this insidious disease.
In 2008 my mother became unwell. Blood test results revealed problems. She was shivering, incredibly cold all the time, her stomach looked like she was pregnant. She had an itch all over her body that she said felt as if it was coming from the inside. 12 months later she was diagnosed with primary biliary cirrhosis – a rare auto-immune disease (assumed to have been influenced by the chemotherapy from the 1970s) and for which there is no cure. I recall feeling “relieved” that it was not cancer. Little did we know what was to come.
From 2009 to 2011, my mother had to be admitted to 24/7 nursing care. Her disease had taken over her body. She suffered from regular ascites (a build up of fluid in the abdomen). The toxicity of her disease resulted in her losing mental capacity. The ascites would have to be drained, she developed a range of other symptoms (choking, breakdown of skin, psychotic episodes – the list goes on). Her last years were nothing short of appalling. Her last year was traumatic for everyone. I prayed that she would go to sleep and not wake up. At the end of 2011, after months of lying in a bed sleeping, only able to drink sips of water and the odd teaspoon of soup or yoghurt, she passed away.
In 2016, after seven months of intense pain in my right ribcage, and it being dismissed by my GP as muscular-skeletal pain and all I needed to do was to go and see a physiotherapist, I had a chest x-ray to rule out a broken rib. The x-ray revealed a 40 mm tumour in my right lung.
My family and I were called to my GP’s practice within an hour of the chest x-ray. The oncologist appointment had been organised for four days’ time. The oncologist saw me and said he wanted to speak to a team of other oncologists immediately after his consultation with me. By the time my husband and I had reached the car park at the hospital, the oncologist called me on my mobile and said there was no way of “sugar-coating” my situation – I was looking at months.
The chaos of a mind processing this information – wondering how you will tell your children? How will you deal with all that is to come? My husband and I went and sat in a park on the way home and just cried – trying to overcome the shock and grief to be able to come home and deliver the news to your children.
I was referred for a procedure – draining and biopsy of the tumour in my lung – to identify the pathology. This occurred within days. During the procedure my body went into shock – probably because they were investigating around the sensitive pleural cavity area – and I found myself on a crash cart in the Emergency Department. I actually had never experienced pain like it. I literally thought I wasn’t going to make it. I couldn’t breathe, the pain was unbelievable. After shots of morphine into my stomach, after an hour the pain subsided.
I sought a second opinion from a second oncologist. I was referred for another biopsy – this time a much better procedure, under a “twilight” anaesthetic. Three weeks later it was confirmed that my original breast cancer had returned and was now metastatic breast cancer in the right lung – a 40 mm tumour that had also entered into the pleural cavity. No cure, just hopefully “buy more time”.
I entered the world of “chemotherapy” in 2016 and hoped for “stability of the cancer growth”. Chemo world alone is not for the faint hearted. You live from eight-week cycles to eight-week cycles, the world of “have your tumour markers increased, or decreased?” The world of scans, checking to see where the cancer may have progressed next.
In 2018, after routine scans, a new area of metastases was found in the omentum (lower abdominal area of muscle/tissue that covers the bowel and bladder). Another biopsy process which confirmed metastatic breast cancer. Chemotherapy ongoing until September 2018 when they confirmed the chemotherapy wasn’t working and they needed to up the “ante”. A new chemo regime. All of the regimes have side-effects – it would take pages to list them all.
I call it “the in-between stage” – the period of time after a diagnosis and before end of life that no-one takes the time to really hear.
In March 2019 I was advised that the area in the omentum was not responding to the chemo. What could I expect? A possible bowel obstruction as the cancer progresses, the likelihood of a colostomy procedure (I tell them I’m not going there), I need to watch for pain, fever and get to an Emergency Department if that happens.
In May 2019 a CT scan shows “some improvement” in the omentum so they defer changing the chemotherapy again to a heavier duty type. I am referred to a colorectal specialist. He advises CT scans rarely show the true situation with cancer in the omentum – on CT scan it can look worse and when they “get in” it’s not that bad, OR, the CT scan can show it’s not too bad and they get in and it’s much worse. The cancer in the omentum is not a solitary tumour – it’s grains of it. My oncologist described it as akin to opening up a car bonnet and throwing lots of grains of sand – except it’s not sand, it’s cancer and it’s in my body.
So I have a big discussion with the colorectal specialist and I say I’m not there yet with the bowel obstruction, but I have some specific directions by way of an Advance Health Directive – what I’m prepared to go through and what I’m not.
I reflect on how my brain and attitude has had to continually shift along this cancer journey. What you once deemed as “good news” changes, your definition of what “good news” is if you leave the oncology appointment and you have a few months ahead of you.
I reflect on the worry and the anxiety that comes with a diagnosis of “terminal cancer”. It’s not a fear of death, or a further metastasis that causes me sleepless nights, it’s how the last few months are going to be.
I have always been independent. I love life. I love being out and about with friends. I absolutely do not wish to enter into the world of “palliative care”, I don’t even like hospitals! I don’t need the assurance of care in a hospice environment – I don’t want to be there, full-stop!
I am reminded of the deaths of my parents – and the deaths of others. I feel an anger, like many in my situation, that my quality of life and remaining life on this planet, could be so much better knowing that when that ‘end stage’ actually comes, that there is the option of Voluntary Assisted Dying.
I am in Queensland – it’s highly unlikely that the legislation, if it does come, will come in my time. I can’t give up – I have to keep the topic in the spotlight.
I have to keep reminding those who will listen, that you need to think of the patient – the person going through all of this. This is why I have chosen to become an active lobbyist over the last two years. My contribution won’t help me, but it may help others.
I research/read and follow the topic of Voluntary Assisted Dying, day in, day out. At the end of the day we have so many people, in positions of authority, determining the outcome for individual people, making choices about their life, their body when the reality is they are not living in that body!
I have experience as a carer, I have experience as a patient and now I have experience as someone living with terminal cancer. Please hear my voice and the voice of others actually living this experience.
Voluntary Assisted Dying is not about ending life – it’s about ending suffering.
Tanya Battel, VALE (Voluntary Assisted Life Ending)
photo courtesy of The Courier Mail