On World Cancer Day, editor Anna Magee reflects on what she has learned after losing her mother to cancer seven months ago
I lost my mum on June 25th last year, six months after she was diagnosed with what doctors called ‘metastatic cancer in three places.’ She was 67.
In hindsight, how we couldn’t see the reality of the diagnosis in that simple word ‘metastatic’ is beyond me. But when the doctors drew a diagram, placing an X where the cancer was – in her head, her pelvis and a ‘shadow in her lung’ they accompanied it with ‘well, it’s not in any organs, and we think we can beat it.’ We took hold of that with blind optimism. So did mum.
There is a current debate going on about the appropriateness of using battle metaphors in describing a patient’s relationship to cancer.
But heck, my mum was a fighter and my God, did she fight. Right from the get go, she had an unwavering willingness to have whatever treatments doctors recommended and to grasp any bit of good news they handed out about her progress.
My mum lives in Australia where I was born and since January, she was being shipped in and out of hospital, having had constant reactions to the chemotherapy being administered.
By April, my sister called in the small hours and said ‘Just come, this is bad.’ The subtext of her words was that none of us knew how much time she had left.
Walking into mum’s hospital ward, I was chuffed to see her smiling, and while not exactly her usual manicured self, with hints of hair loss, she looked generally okay. But her walking was rocky, and some days she had difficulty even getting in and out of bed.
I sat with mum in her cancer ward for four weeks, getting there every morning around 9 and leaving each night just before she went to sleep. My sister and I would tuck her in with an episode of Lewis, and I would return the next day.
I learned a lot from that time sat in that Sydney hospital ward, and I wanted to share some of my experiences with you.
1. If you don’t control your healthcare, no one else will
My mum had paid for private health insurance for the 50 years since she first started working at 16. But so many aspects of her care – in that cold light of day – left a lot to be desired.
At one point in A&E, despite clearly wearing a band saying she was allergic to penicillin, she was administered penicillin, and if it hadn’t been for my sister who noticed mum turning the colour Violet did when she blew up like a blueberry in Willy Wonka and the Chocolate Factory, my mum would have gone into anaphylactic shock.
Not being one to make a fuss and being of the generation that put all her faith in hospitals and doctors, she wouldn’t let any of us complain.
But the errors kept happening. It was a teaching hospital and someone changed a pipe incorrectly that was draining fluid from mum’s lungs, the result of a pleural effusion (fluid on the lungs) caused by mum’s cancer. She ended up infected and uncomfortable and in terrible pain, and ended up having an operation to remove it.
Meanwhile, mum was certain she wanted to be resuscitated if she went into cardiac arrest but both times she tried to change that on the various forms she was given, her doctors talked her into signing a Do Not Resuscitate order. At one point – when I was crying and dumbfounded by what they were doing – one of the doctors even said the final say lies with him – despite being told the contrary by an Australian solicitor.
Mum got embarrassed and upset about my arguing with the doctors so I let it go but I really wish I hadn’t. Gosh, I wish so many things. I’m so haunted by what ifs. ‘What if I had researched more and suggested something else? ‘What if I had got a second opinion.’ What if? What if? What if?
2. If you don’t ask you don’t get
By the time I had got there, mum had been in the cancer system for four months. Yet there wasn’t a social worker, occupational therapist or even a palliative care nurse anywhere close to her radar.
Each time she was sent home after chemotherapy she was left to fend for herself so she would get very sick again and end up back in A&E.
But there were no nurses monitoring her at home, no occupational therapists had been to the house to reconfigure the bath and the loo to suit mum’s new limited mobility. Nothing. Big fat zip.
Mum clearly needed a wheelchair and walker for going out. None of it had been offered. I later found out that cancer patients are entitled to social worker, occupational therapy, palliative care and community nursing support. Mum had been given none of it.
I got on the phone and started shouting at people and within a few days she had her walker, bed wedge to help her breathing at night, a wheelchair and she’d finally met the social worker. But had we not known what support mum was entitled to, we wouldn’t have asked for it and we wouldn’t have got it.
When mum was in her very last days, a sprightly lady came by telling us about a wish fulfilment foundation available for all terminal patients. Thanks we said, but it’s a bit late for mum to make any wishes, unless you can supply a new brain, fresh set of lungs and an entire skeleton – the cancer been voraciously working it’s way through her body at a cruelly high speed and was in all those areas.
A nurse at one point referred to a ‘family meeting’ when I was asking one of my many questions.
‘That should have been explained at the family meeting,’ she said. ‘What’s that?’ I replied. It was yet another thing we weren’t given, a meeting for the family explaining the reality of the situation from a medic, and a part of treatment protocols for cancer.
3. You need to push for a clear diagnosis
I don’t know how much point a family meeting would have been because mum’s medical team talked in riddles.
Perhaps it was because they wanted to spare us the reality of her condition or perhaps it was because they didn’t know shit about what they were doing, but each day delivered another long, convoluted non-explanation about mum’s progress.
I took to recording the doctor on my phone and having it transcribed in order to try and figure out what the hell he was talking about (by this time mum had banned me from interrogating the doctors and nurses!).
Mum’s cancer was complicated. The cells that they had seen in the various places were all metastasised – that is to say, they had spread from somewhere else. But the doctors couldn’t figure out where the cancer had originated and thus were playing guessing games with treatment.
It was only because my sister had overhead a conversation between the doctors that we finally figured out that mum had what was called ‘Cancer of the Unknown Primary’ or CUP. But it wasn’t until I actually asked the doctor, ‘So is the diagnosis CUP,’ that he confirmed it.
It was as though I had to figure out what questions to ask and the doctors would confirm them or not. My mum was facing a life-threatening disease and I felt like I was scrambling around for breadcrumbs, begging for answers and being constantly drip-fed information.
When the doctors could no longer hide the fear on their faces whenever they looked at mum’s case, I optimistically said, ‘but it’s not in any organs.’
And one of them replied, ‘Yes but it’s in the abdominal lining.’ And that was it. No more explanation, no more elaboration.
I was left Googling, ‘what does it mean if cancer is in the abdominal lining?’ because no one wanted to explain anything to us.
4. Palliative care people have a job to do
Being more or less in the dark about mum’s prognosis, I was grasping for information from everyone I could trip up in the hospital corridors.
At one point, mum developed a build up of fluid in her legs and I asked a palliative care nurse what that meant and what we could do to help.
‘That’s what happens to people who have advanced stage IV cancer, because their potassium levels are so disturbed,’ she said.
Those words: advanced. stage IV.
No one had uttered those words to me or anyone in my family at any point. One of mum’s big positive notes was that ‘Well he [the oncologist] didn’t give me a stage so that must mean I am going to be fine.’
A week later, and still in the dark about mum’s condition, we were trying to get mum into a cancer rehab unit to get her legs working again, once the final bout of chemo was over. Another palliative care nurse, this time a different one, was insisting that she be taken to a hospice.
‘But mum needs rehab, not hospice care,’ I said. I was sat in the ward this time with two of mum’s sisters and my uncles and cousins also in the room.
‘Your mother has incurable cancer, is that news to people?’ she said, looking around at all of us. They were the exact words this palliative care nurse used and they still burn my head when I think of them, like being suddenly doused in a toxic chemical that melts my skin with no warning.
I was speechless and burst into tears prompting my mum to exclaim, ‘Anna stop crying will you?’ embarrassed about my constant outbursts.
I felt like mum’s suffering was the most important thing in the world because it was the most important thing in MY world. But palliative care nurses have a job to do and that is to manage the physical pain of the dying.
In the spirit of remaining detached, they have to be what to me seemed almost blasé about what was going on. But that what they signed up for isn’t just another job, it’s caring for the dying. That must come with a degree of compassion and sensitivity for the families.
Palliative care nurses are there to administer pain relief in the form of morpheine or whatever the patient needs to numb their agony. They’re not there to manage the emotional pain of the family members or to screen the worst from them.
5. Cancer is s&*t
I can’t tell you how many words I have written in my lifetime about new treatments for cancer, new immunotherapy treatments that could change the face of patient’s progress, gene discoveries, research into prevention.
But what I learned from all of this is that once they have you, some cancers are ferocious. Two years earlier, mum had endometrial cancer and as a result had had a hysterectomy removing her entire uterus. That meant that it was impossible for doctors to know if her ‘primary’ cancer was in her ovaries, which was probably likely.
As a result perhaps (who knows we weren’t told the whys of her treatment) mum was being given a routine chemo combination of Carboplatin and Taxol, commonly given to those with lung, breast or ovarian cancer.
It was making her weak, tired, constipated and she was losing her beloved hair. She didn’t care, even that she couldn’t walk. She wanted to live.
But one thing I have learned from oncologists over these years is that while they seem to be able to treat cancers that are primary and are contained, say in the testes, breast or indeed the endometrium the secondary and metastasised cancers seem to confound them. I have had one oncologist confess this to me, specifically in regards to breast cancer
6. Would I have chemo? Depends
Speaking of oncologist’s confessions. I remember having a long interview with one oncologist at a leading cancer centre in the US. We were discussing new treatments for a feature on what the future holds for cancer.
He had set up some exciting scenarios – albeit all hypothetical – about things that could happen if we discovered this, or figured out that.
At the very end, I asked him: ‘So, if you had cancer, would you have chemotherapy?’
He paused and said: ‘It depends on where the cancer was.’ Intrigued I asked he what he meant.
‘Well, if it was the testes or a female relative had it in her breast, I would probably say yes. Maybe even the lung, but if it was anywhere else I would find out what the true prognosis was and then fly to the Caribbean and drink blue vodka.’
Of course, even he couldn’t know how he’d react until it really, truly happened.
But it’s the kind of anecdote that haunts me in the aftermath of mum’s death. Yet another what if? What if I had pushed for a clear and honest prognosis sooner? Could we have flown mum to the Bahamas and put her on a diet of blue vodka, sun and Belluga caviar for her final days?
7. When you get the prognosis make sure you’re ready
After four unanswered emails and practically crash-tackling mum’s medical team outside the lift, we finally got our family meeting.
I was a few days from leaving for Australia and mum was looking what doctors called ‘systemically well.’ I now know that means, smiling and alive, despite these ferocious mutant cells eating her body.
Yes mum’s diagnosis was CUP, the oncologist confirmed. And yes, he had got most of the initial treatment wrong because he was primarily an oncologist specialising in gastrointestinal cancers, not CUP.
All of course confirmations, after I had figured out what was going on and what questions I had to ask.
And it would probably be weeks, rather than months, before I had to come back to be with mum in her final days he said. I got the honesty I wanted – finally – but even then I wasn’t ready for it.
I broke down yet again after that meeting, overwhelmed by disbelief that this thing had taken over my mother’s body and this important-looking highly qualified doctor couldn’t fix it.
The anger I felt met the low-level grief that had been brewing inside me for weeks – my legs gave way, outside that doctor’s office.
Even now, nine weeks later I am quite impressed with myself every time I manage to get out of bed, get dressed and put one foot in front of the other on any given day.
8. People who are dying can still hear you
During mum’s final days, it was clear she was slipping in and out of consciousness. Dosed up with morpheine, with tumours all over her brain, some days she would recognise us and others she wouldn’t.
But studies have been done on the dying that have showed they can still hear and that this is often the last sense to go. Or so my laptop told me over and over again, as I Googled: ‘stages of dying.’
Mum loved Ed Sheeran so we played her Supermarket Flowers while I massaged her feet, and I swear I saw the corners of her lips turn up in a smile and heard her groan with pleasure. I still cry when I hear that song. It was her.
I couldn’t stop touching my mum in those final days. Rubbing her arms, and her hands and her belly; kissing her face, smelling her and drinking in all that I could of her. I wanted her to live, above all, I wouldn’t give her up. But she was suffering, I knew I had to find a way to let her go.
She kept wow-ing is though with little surprises that we grasped tightly. We thought she had lost consciousness during the last couple of days but when I told her that her granddaughter Jamie had brought red nail polish to put on her nails, mum delicately brought her hands out from under the covers and spread out her fingers in anticipation of Jamie’s manicure.
Dedicated to the cause of beauty to her dying day. That was my mum.
9. Family, friends, love. It’s everything
‘We love this room, it’s always full of people,’ the nurses would say, when they came in to check mum’s oxygen levels.
Relentlessly positive, with such an appetite for life and people and a smile that would light up a room mum had so many friends, and many of them would regularly come and sit with her, drinking coffee and talking about the Royals (she loved the Royals).
During the Royal wedding, she made us all bring scones and Champagne to her room so my sisters and all her grandchildren could critique Meghan’s dress.
Mum laughed so much about that preacher [Michael Curry] who seemed to steal the show, ‘Is he EVER going to stop talking?’ she kept saying.
Having been married three times, mum had a wide network of various extended families and friends and as far as I could remember had never fallen out with anyone. 200 people attended the funeral, and we ran out of food at the wake!
My mum was always there for others and in the end, they were all there for her.
In those four weeks sitting in that ward with my mum, her friends, my aunts and uncles and various other old age pensioners, whether we were talking about their constipation or Donald Trump, one thing was certain we laughed a lot. A lot.
Love. In amongst all the anger at the medical mistakes, the crippling frustration at not being able to do anything to change the situation, the confusion and the unspeakable horror of anticipating losing the person who I had been closest to for the longest time of my life, the most powerful feeling I got in that ward, by far, was love. Pure and simple.
Whether it was seeing my aunts or my mum’s partner by her bedside every single day, bringing her home-cooked meals so she would dodge the hospital food, or my sisters rubbing my mum’s face with her favourite Lancome serum and dousing her in Chanel No. 5 or the small Chinese man that would sit and cry quietly in the coffee room, unable to do anything to save his wife who was on the ward and dying of secondary breast cancer at only 56. I watched as he walked her frail body around the ward, rolling her drip at her side as she shuffled along, he telling her stories about their daughters.
Who would have thought that on the top floor of that Sydney hospital, the chronic cancer unit, where so much bad news was delivered on a daily basis, that the most tangible force in the atmosphere wouldn’t be grief, or confusion or even anger. It would be love.
I love you mum.
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