Two months after stopping chemotherapy, my brain tumour has grown back. It is now 1.6 centimetres, less than the size of the golf ball it was when it was first discovered and prior to surgical removal, but already putting pressure on my brain.
Once again, the first indication was a seizure. Unlike last time, I was conscious for most of it and it was terrifying. I could hear everyone around me, but I was unable to communicate. Nor was I able to still my body. I kept hearing a rattling, and I drifted in and out of awareness that this was my breathing.
I went to emergency.
A kind young doctor tried to reassure me that it was just the swelling causing short-circuiting. It didn’t necessarily mean the tumour had returned.
I would have a scan as soon as possible and they were hopeful they would get me home in a couple of hours. But as evening came, and the doctor pulled a chair up alongside my bed, I knew she was here to deliver bad news. The tumour had returned.
In the days that followed I met with the specialists who outlined my choices: surgery, which they were reluctant to do as it is too near the site of my language; more chemotherapy; and then other less tried and expensive treatments, immunotherapy being one.
We also talked about the progression of the illness and what form it would take. Unfortunately there is no map that I can rely on. I asked the oncologist for a referral to palliative care. I told him I wanted to get to know “the team” while I could still make my wishes clear, and he was supportive of that choice.
I wrote about euthanasia some months ago, in the context of my mother’s Alzheimer’s and my own brain tumour.
My mother, Anne, had always said she wanted to die if she had dementia, but when the doctors told her of her diagnosis, she never asked for anyone to end her life or tried to do it herself. I don’t think it was a decision as such, just more a matter of her infuriating, and admirable, optimism that she could beat this illness, and her increasing inability to comprehend the degenerative nature of Alzheimer’s.
Now she is truly incapable of making decisions for herself and I could neither help her die, nor ask anyone else to do it for her.
These are the words I wrote and I still stand by them.
I know that my recent column on this topic may have been interpreted by some as being against euthanasia. I simply don’t know the circumstances in which I could end my own life or another’s. And I was making a plea for a society in which the dying and ill, and those who care for them, are treated with respect, as individuals with individual needs. I also want to stress that since my tumour was diagnosed, I have been treated by wonderful, caring people, from the blood nurse to the senior doctors, all of whom recognise that I am a person first, rather than an illness.
I am wary about writing about euthanasia again, as I know so little on the topic, other than my experience of dealing with my own terminal illness, and my mother’s. I do not want to speak for others: doctors, patients or carers. I still feel the issues it raises are extraordinarily complex, too complex to be untangled by my chemotherapy-addled brain. But since the tumour has reappeared I have wanted to clarify my thoughts, or perhaps to add an addendum, aware that I will be skipping over so many fraught areas of consent and complicity, and the need to protect the vulnerable. A 1400-word column, or even two, is just not enough to even start to tease out so many of the tangles. These are just the words of someone who is closer to the end than she would like to be, someone who is grappling with this issue as her illness unfolds.
When I came home from the hospital this second time, I felt overwhelmingly bleak but I also knew this was the last window in which I could make choices for myself. I don’t know how long this window will be open or what course this illness will take. It is likely that I will become less and less able to communicate. I may not be able to walk or stand without assistance, I may have a stroke. I may be in pain. The decline when I stop treatment may be relatively quick or lingering. These are all guesses with many variables. As doctors keep telling me, everybody’s cancer is as individual as they are.
I asked my GP if she could give me more information on the dying process, and she shook her head. “How to explain dying?” she asked.
Perhaps it is like asking someone to explain living – perhaps the two cannot be separated.
All I know is that it’s been as good as it’s going to get. I am on the decline, and it would take a miracle to halt that trajectory.
And so I started researching ways to end my life.
I have a daughter and a partner whom I love. I do not want to implicate them in my decision, I don’t want them to be prosecuted, or to be made to feel responsible or guilty in any way. But I wanted to have the choice, alongside all the other choices being laid out in front of me.
Unfortunately, as anyone who has been in this situation before me has found, it isn’t easy to take your life, unless you’re prepared to jump off a cliff, or shoot yourself, or drink a bottle of wine, take some sleeping pills and put a plastic bag over your head. I wouldn’t want anyone I love to find me that way.
Nembutal is the drug. It is supposedly peaceful, but it is hard to come by. In Australia, only vets have access to it, and I have been racking my brain for a vet who could slip me a vial. Yet, even if I had a friend who was a vet, I would not want to get him or her into trouble, to risk his or her licence for me.
I could try to buy it over the internet, but every part of me shies away from that scenario – what will I be purchasing?
I had friends who were doctors in the first wave of the AIDS epidemic and I recently rang one of them.
It was a hard conversation.
I told him I didn’t want to cross a line, we are friends and if he felt uncomfortable with what I was about to broach he could stop me.
I asked him if he could come talk to me as a friend, with knowledge, about palliative care, and options to end my life, ranging from simply stopping treatment to acting of my own accord.
He told me he would. “Unfortunately, or perhaps fortunately, this is what I can give you, what I’ve learnt.” But he also stressed that he has not been working with the terminally ill for some time, and he has been living out of the country. His knowledge was out of date, but he would do the best he could to give me whatever information he had.
Just as we were about to hang up, trying to bring the conversation back to some even keel, he said one simple thing that resonated with me more than any other since this latest bout of shocking news.
He told me that in that first wave of AIDS, he knew of very few people who actively ended their lives. Most people he knew just wanted the comfort of knowing that they could choose. Having the drugs didn’t meant they would act today, next week or even in the next few months, but patients he had cared for had found consolation in having this option available.
Each morning when I wake at 4am, I am certain that this is the comfort I want. Whether or not I will choose to take it is another thing. But I want the choice to end my life on my own terms if I am still able.
Georgia Blain’s column is The Unwelcome Guest.
This article was first published in the print edition of The Saturday Paper on Oct 8, 2016 as "Choose control". Subscribe here.