This was a version of the story told at the UCL Reel Health event earlier that week. It had changed a little because you always rehearse with Spark London, and Joanna Yates gives feedback and suggestions for improving the tale and getting the audience involved as quickly as possible in the key aspects of it.
As at UCL, the story made people laugh, shocked them, made them a bit angry and made them cry. Not a bad result. I did it without notes (Joanna’s new rule) so the relationship with the audience as I told it was more intense. When you’re telling rather than reading, it isn’t as precise or modulated as the written version. But when it’s a story you know so well and have told so often it really does seem like you’re just telling another friend, rather than a room of strangers.
The story is below, but I didn’t tell it all. For reasons of time I was asked to stop at the point at which the first incidence of mistaken identity is uncovered. I was a bit annoyed at not being able to follow the narrative to its parallel conclusion, not least because one of the other storytellers that night went on, and on, and on, for nearly 10 minutes above his allotted time, trying to raise laughs by detailing the perceived ugliness of the women he dated whilst practising as a Christian. But I forgave him…
In April 2001 my mum lost the will to eat and drink – very uncharacteristic I assure you. She went a bit yellow, started falling asleep a lot, which I realise makes her sound a bit like Homer Simpson.
A month later, after one hospital diagnosed diabetes and discharged her, having carried out no further tests, which seemed even to my amateur eyes to ignore that yellow tinge, she was gripped by delirium. This included fervent but dazed repetition of instructions such as asking me to make her a cup of coffee; while I was in the kitchen she called me back and asked me to make a cup of coffee; I returned to the kitchen and she called me back and asked me to make a cup of coffee. I freaked out, not knowing what was wrong, and suggested she would have to go back to hospital. She said, as she lay on the sofa in agony, ‘You call that ambulance and I’m fucking walking right out of here and down that road.’ I said, ‘You can’t even stand, let alone walk. You won’t get far.’ And so I was compelled by her behaviour to call the ambulance that would take her to a diagnosis of something else.
On 22 May, 3 days after she was admitted, a senior doctor in her local hospital took me from my mum’s bedside, around a corner out of her sight. ‘We’ve done a scan of the liver and we’ve found tumours,’ she said. My hand shot up to my mouth – the first of many actions that made me feel like I was an actor in a TV hospital drama.
‘Is she going to die?’ I asked.
‘We’re all going to die,’ came the rather unhelpful reply.
I was advised by this senior doctor to tell my mum this news, so while I waited for my brother to join us I sat by her bed making small talk and lying about why I’d been taken away, around the corner, out of her sight. I also tried very hard not to cry.
The telling, when it came, was blunt but not explanatory: talk of tumours from the doctor, and ‘Do you know what that means?’ My mum replied, blankly, ‘Yes, cancer.’
Although it was never fully explained, it became evident from what the doctors inferred that her liver cancer was secondary, so my mum spent the next couple of weeks being tested – mammograms, needles inserted into her kidneys, scans and x-rays taken of her lungs. Nothing was found, and she seemed to think this meant she didn’t have a disease that was going to kill her. We were advised to remind her that she had cancer; my view was that if being in denial helped her to get through the indignities she suffered then good for her. We all know we are going to die; I am not sure that it helps to focus on that when you are alone in a hospital ward struggling to sleep, waiting for someone to lift you into a comfortable position or bring a bedpan.
The delirium that I had first witnessed in my mum was due to hypoxia, where the body is deprived of oxygen, and her behaviour and facial expressions from the initial episode were imprinted on my brain. So on one hospital visit, when I saw her gripping the bedsheets, rigid, eyes shocked open, skin sweating, I knew what was happening. ‘Keep an eye on her, she’s not right,’ I asked of the nursing staff as I left the hospital that night. They dismissed me as an over-anxious busybody daughter. A few hours later I was called to come in. When I asked what had happened I was just told: ‘We think you should come in.’ So, I spent a taxi journey assuming I would be racing to my mother’s dead body. It was like being in a film or an episode of ER except there was no George Clooney at the other end: I actually said the words ‘to the hospital and step on it’ to the taxi driver. As I ran through the foyer and hospital corridors, I remember thinking, ‘This is the bit where I’ve had the late-night call. This is the bit where I run through the hospital corridors. This is the bit where…’ But my mum survived another attack. I spent another night clamping an oxygen mask to her face, holding her down while medical staff tried to get paracetamol into her by whatever means they could. She kept spitting the tablets out at them so they had only one orifice they could go for. I won’t ever forget the look on her face at that point.
After a particularly lengthy and traumatic hypoxic episode, one night she was moved into what a friend and I had termed The Dying Room, a private room off the side of the main ward where seriously ill patients were wheeled in barely alive and wheeled out dead. Along with one of her sisters and one of my cousins I took it in turns to calm her, talk to her, hold the oxygen mask on. The night doctor advised me to get my brother home from his Canadian holiday and said ‘The liver’s breaking off; it won’t be long now. This is what’s causing the attacks.’
But she came round, found out about the use of something from the dangerous drugs trolley and became terrified that she’d become hooked on heroin.
We were not advised by that night-duty doctor to tell her it wasn’t long but I think she must have sensed it: she started instructing me to use her old-age pension to buy presents for close family members; she became queen of the private room, hosting family tea parties and getting waited on hand and foot. We joined in and took it in turns to sneak to the toilets to cry, and we all acted like she wasn’t going to die.
On June 20th, almost a month after that initial diagnosis, as I sat in the room with her watching Witness for the Prosecution on the TV, her consultant oncologist came in. He got distracted by the film and told us of his love for black-and-white movies, Casablanca in particular, until I suggested he might have popped in for a reason. These were his exact words, remembered 9 years and 3-and-a-bit months later:
‘Those tumours on your liver – they’re abscesses.’ He elaborated on the treatment – a fortnight of intravenous antibiotics followed by several months of tablets. My mum nodded sagely; I sat with my mouth open. As he left with no other information offered, she tried to stop me following him but I had a few, necessary, questions. ‘Are you saying she hasn’t got cancer?’ I asked. He confirmed that it was in fact abscesses. ‘So she isn’t going to die?’ I asked. He confirmed that the antibiotics would see off the infection. I had to press him for more information. ‘So all these attacks…?’ I was told that the infection from the abscesses was working its way round her bloodstream, leading to all the fevers and hypoxia. He told me that what they thought were average pictures of tumours were actually really clear pictures of abscesses. And then he was gone.
When I returned to my mum’s room, the shock of that month of living with her dying, and now being told she wasn’t dying, hit me and I lay across her chest sobbing. ‘Don’t cry,’ she said. ‘You didn’t cry when you thought I had cancer so don’t cry now you know I don’t.’
‘Are you having a laugh?’ I said. ‘I cried you a fucking river.’
None of her doctors or consultants were seen again. The nursing team took charge of administering the intravenous antibiotics and seeing her through the side effects, with the support of me and various family members who still visited regularly. A prescription for tablets to take home appeared seemingly from nowhere and was filled by the hospital pharmacy. On the day she left, that night-duty doctor from the ‘liver breaking off’ scenario happened to be on the ward. ‘Sorry about painting such a black picture,’ he said. I was so taken aback by this, the only apology we received, that I immediately reassured him: ‘That’s ok, you painted the only picture you could with the information you had.’
She was discharged 2 months after the initial, incorrect, diagnosis of cancer. For the next few years she recovered enough to get around with a walking frame, still take public transport and go into town to play bingo with her sister. I took her to Paris and on the Orient Express, two things she told me she wanted to do while she was in The Dying Room. She travelled regularly to Hastings to stay with family and up to London to see me. She saw the birth of my brother’s children, her grandsons.
In the early part of 2008 she started falling asleep again in the day and not sleeping at night; she found shopping and cooking and cleaning a lot harder. She found getting up the stairs almost impossible. After refusing entry to anyone from the local healthcare trust she eventually called me one night in June 2008 and said, ‘Just to let you know I’m going into hospital tomorrow.’ When pushed, she revealed that she was having trouble breathing and had been turning down the local district nurse’s attempts to get her in for a check-up. When she left hospital after one day it was with a diagnosis of COPD: Chronic Obstructive Pulmonary Disease – in her case, emphysema. She was given more inhalers and oxygen both at home and her sister’s place in Hastings, where she was a regular visitor. I went to see her often and I watched as her face became grey and her movements more fragile.
In May 2009 I was called to Hastings where she was staying. She was clearly unwell: falling asleep, not eating. She refused attempts to be taken to hospital and convinced us that she was just not feeling hungry. I assumed the abscesses were back and instructed that the visiting doctor be told this. She had perked up enough by the end of the weekend for me to think it was safe to return to London and to work. On the Monday she saw a local doctor in Hastings while back in London I phoned my mum’s local Social Services to try to get them to act faster on the care plan I had been requesting for several months; on the Tuesday a district nurse began making arrangements with her counterpart where my mum lived; on Wednesday my cousin Tony called me to say my mum had died.
A post-mortem was carried out and in another case of mistaken identity it was discovered that she didn’t have emphysema. In fact, one whole lung was full of cancer and it was spreading. The haemorrhage to her main airways that had killed her had occurred because of this undiagnosed cancer. And to add a final twist, as I sat with her body on the day before her funeral, I received a message on my mobile from someone at Social Services, two weeks after I had called to tell them, ‘If you don’t sort something out she is going to die’: ‘Hi, just returning your call to arrange a care package for your dad.’ When I rang them back I said: ‘Yeah, good luck with that, he’s been dead for 30 years. And my mum just joined him.’ The Hastings to London train went through a tunnel and no one ever called me back.