Like most people who are, I never expected to be diagnosed with cancer. But I did and it was both a surprise and, strangely, a relief.
At 48 my lungs were badly damaged by severe pneumonia, I spent a month in intensive care and returned to work after 4 months sick leave. I learned to manage my chronic lung disease, joined a support group and eventually came to lead it. I thought that having acquired this lung condition, I would not get cancer. In psychology this is called magical thinking - superstitious thinking. And it did not protect me. But it certainly ended up preparing me well for living with a terminal illness.
I did not have any of the major risk factors for cancer. I'd never smoked, barely drunk much alcohol, wasn't obese (a bit overweight, if I'm honest). Thanks to pulmonary rehabilitation after my pneumonia, I exercised regularly, within the limits of my lung condition. I'd had no occupational exposure to known carcinogenic agents, apart from parents who smoked. I had no close relatives who had had a cancer diagnosis. I'm a keen family history researcher, so I know the cause of death of many of my relatives.
Liver cancer usually has no symptoms until quite late in the piece, so I was lucky that mine did - or the tumour might have grown much larger and been too large for successful surgery. What I did have was severe pain on my right side, just under my rib cage. It began one evening just after dinner, a month after we returned from a fantastic 6-week camping trip into the north of Australia - including the Kimberley, the Top End, and Kakadu National Park. We phoned up the home visiting locum GP who examined me and suggested we go to the local public hospital emergency department. It could be appendicitis, he thought, or a gall bladder attack. Not urgent. The hospital could do some tests to pinpoint the cause.
As I was getting ready to go to the hospital the world became yellow and dizzy, and I blacked out. I came to on the floor. My partner Tom had managed to break my fall. He'd called an ambulance as he now couldn't risk taking me by car. The ambulance took me to hospital, no flashing lights or sirens. Arriving by ambulance on a Friday night I was seen remarkably quickly in the ED. A CT scan revealed a growth of some sort on an outer lobe of my liver. It looked to be about 25mm across. It had been contained within a capsule which burst, along with an adjacent blood vessel, causing internal bleeding, hence my blackout and the pain.
The doctors arranged for a hospital bed and surgery as soon as possible. I was made comfortable with pain killers until surgery could take place - about 36 hours later. My son lived in Malaysia and managed to arrange a flight to Perth, arriving not long before my surgery. After the surgery I was told it might be a couple of weeks until the pathology results became available.It turned out to be 5 weeks. By this time I thought the tumour was surely benign, otherwise I would have been called in for the results much sooner. The section cut from my liver (segment VI) turned out to be 120 x 120 x 50 mm, the tumour being a nodule about 50mm in diameter. Apparently you can lose about 75% of your liver and it will regenerate. I'd lost only about 5%. Cruisey.
I was surprised to discover that this growth was in fact malignant, a hepatocellular carcinoma (HCC) or hepatoma, the most common type of liver cancer. I recovered well from the surgery and was told the surgeons were confident that the whole of the tumour had been resected. Because a blood vessel had ruptured with the tumour capsule, there was a chance that the cancer could have spread elsewhere in the body. So I would be monitored quarterly by blood test and CT scan.
Every 3 months I attended the HCC clinic and saw so many very ill and frail people in the waiting area. I felt like a fraud, taking up valuable hospital resources. At each consultation I learned more about HCC and my particular situation. My partner attended each of these specialist visits for a year, providing another set of ears, helping take notes and ask relevant questions. Since all was going so well, I told him it was OK, I could go on my own to the next one. So 14 months after the tumour had burst, after the "all clear" on CT scans and blood tests, I received the surprising news that metastases (secondaries) had been picked up on the latest CT scan - in my lungs and in the abdominal cavity, the peritoneum. Too many tumours in the lungs for surgery.
In Australia there was just one drug approved for liver cancer, Nexavar (sorafenib). I started on that but had to stop after just 10 days because of a severe adverse reaction. Without any other treatment options the specialist suggested I do some of the things I've always wanted to do - at least in the next six months, when my quality of life should be OK. He said he didn't really know how long I might have, but that given my situation, my overall health and other conditions, he thought maybe I had about a year.
I started "getting my affairs in order". Spoke to a palliative care nurse, an independent funeral director, an eco-coffin retailer, the operators of the natural burial ground where I'd like to be buried, a venue for a memorial event and another for a wake. I discussed the 50 questions on the Your Life Wishes cards with my partner and my son, and documented my wishes, revised my will, filled out a personal affairs record book and reviewed my appointment of enduring guardians and attorney.
Shocked
What was I feeling? Well, to be honest, very shocked at first, when told about the metastases. I think I babbled on to the specialist (who broke the news to me in a very sensitive way). I told him I'd hoped to be one of his "happy ending stories". He'd already told me how few people survive liver cancer. He knew I could google that stuff for myself.
Overwhelmed
Then, once I realised how much I had to do to get my affairs properly organised, I felt rather overwhelmed by the size of the job. I wanted to make things easier for my son and my partner after I've gone. I wanted to give away books, clear out things - either dispose of stuff I really don't need and give some items to special people in my life.
Twenty months later I'm still here - thanks to some excellent health care and the availability of some new drugs. Due to my continuing good quality of life, I've only just made a start on the mammoth task I set myself. Honestly, I've barely touched the surface, because my death has receded into the medium distance again. These tasks do not seem to have the urgency they had in late 2017. I can look towards the medium future, plant seedlings, plan some trips again, forget about that last final one.
Relief
I also felt relieved. I realised my finances were going to be OK. If my life is to be reduced in length my superannuation fund will surely not run out, something I had feared for years. And I will probably never develop dementia, a state I would hate to impose on those around me. I won't lose so much more hearing that I am cut off from friends, family, music and birdsong.
I have a pretty good idea what I'm likely to die of, and some idea of what that is going to be like. Though of course you can never really know. This helps many people live their lives with that uncertainty taken care of. I cannot say that topic has ever kept me awake at night, but it's still a kind of relief.
Sadness
I feel sad too. Sad that I will probably not live to see my grandchildren grow up. Sad to leave the people I love, my partner and my son particularly. My son has already had some traumatic events in his life and I feel bad about inevitably adding another. Is that too vain to imagine?
