Remembering Sue Margolis, One Author to Another

Somehow I manage to drag my emotions through the next few days. By the end of the week I’m in hospital having a bronchoscopy. This involves ramming a tube down my windpipe in order to harvest a sample of lung tissue. Refusing sedation turns out to be a big mistake. I’m drowning, gurgling and gasping for air. This is what water boarding must feel like. 

The possibly malignant tissue goes off to the lab. 

A few days later the nice middle-aged lady consultant leans in towards me as she breaks the news. Stage four lung cancer – the type non-smokers get. It has spread – albeit minimally – to my hip and spine. It’s inoperable. Without treatment I will be dead in three months. I don’t look at my husband, Jonathan. I have no idea of the expression on his face. I’m too busy trying to stop myself passing out. As the light-headedness fades, my questions start. 

Does anybody come back from stage four? 

Yes. 

OK, a straw to cling to. 

What’s the treatment? 

Chemotherapy – the type that doesn’t make your hair fall out. 

Another positive.

Chemo might give me two years. That means that give or take a Tuesday I’ll be dead at sixty-four. I won’t see my two grandchildren grow up – or even start school. That’s when the tears start rolling.

Our youngest daughter, Ellie is waiting in the hospital café. She’s texting on her phone. In a moment I’m going to break her heart. Jonathan grips my hand and tells me he loves me. “It’s not good,” I say, opening my arms to my daughter. We hold each other. She bursts into shoulder heaving sobs. I remain dry eyed. “Come on, it’s OK. I haven’t karked it yet. I’m still here.” Still a mum. Still protecting my baby. 

J calls our son, then our eldest daughter. She lives in New York with her husband and the grandchildren I’m so desperate to see grow up. I step away, choosing not to hear what he says, or how the kids respond.

We walk towards the hospital exit in silence. Then Ellie seems to perk up. She announces that she’s had a brilliant idea. “Mum, if you’re terminal, then you do realise you have a vital duty to fulfil.”

“And that would be?”

“You have to assassinate Trump.”

I actually manage a smile.

Jonathan shakes his head. “Nah. No good What about Pence?”

“And I’d have to get a rifle, go to sniper school. It’s too much of a faff.”

As soon as we get home, I Skype Ruth in New York. My first baby is knocking on forty, but to me she still looks about eight … that pretty little face straining not to break into sobs. She tells me she loves me, that she hates not being here. Maybe she should fly over. “If you want to come, of course you must come. But what would you do? And to be honest I think the kids would be a bit too much for me just now.” We agree that she should stay put for the time being.

That evening David, his fiancée and Jumble the cockapoo rock up with hugs and many licks. We drink Scotch and I start musing about whether I’ll live to finish the giant tube of Colgate I just started. David wonders how feasible it would be to poison Trump.

By the end of the following day all our close family and friends know what’s happening. My phone doesn’t stop ringing. Texts and emails are arriving every few minutes. Flowers are delivered. Some close friends send a crate of wine. A couple of people phone sounding like undertakers forced to take a pay cut, but mostly peoples’ messages are spot on. They’re along the lines of: ‘This is total effing crap… meanwhile that bastard Trump gets to be president.” I email back outlining Ellie’s Trump plan.

Meanwhile my girls have got me a badge which says: ‘Cancer is a C**t.’ I love it and I love them for knowing me so well and what will make me laugh. They insist I wear it to all my treatments.

It goes without saying that beneath my gallows humour is a thick layer of panic and fear. I spend my days lolling on the sofa like a romantic poet with consumption. Whenever I think about dying, I’m reminded of when I was a kid and I used to lie awake at night trying to imagine infinity. It caused pandemonium and panic in my brain. The same happens now when I think about ceasing to be. What’s more, as an atheist, it sucks not being able to look forward to the afterlife. Oblivion doesn’t have quite the same allure as eternal bliss and resurrection. I’m considering downgrading to agnostic.

2 …

An oncologist friend has recommended a cancer trial. Calls are made and a couple of days later we rock up at the trial HQ. The doctor in charge tells us about immunotherapy – which I’ve read a bit about in the papers- and the jaw-dropping results it’s having on certain types of cancer – mine included. The theory is that some cancers are caused by the patient’s faulty immune system and immunotherapy gets it on track again. There are few side effects. My response is, OK, when do we start? Turns out it’s not that simple. First there’s my PDL1 to consider. This is a vital bio-marker. If I don’t possess it – and most people don’t – the drugs won’t work. Then I have to have a load of scans and tests to show that apart from a spot of stage four, terminal lung cancer I’m otherwise fit and healthy.

After the consultation, Jonathan is virtually skipping down the street, crying hallelujah and singing What a Friend Have We in Jesus. I’m about to be saved. My husband’s blind optimism, his belief that no matter what he’s up against, his cup runneth over, is one of the reasons I love him. But this reaction is just plain daft. 

“Are you serious? There is no way I’m going to have this stupid PDL1 thing. And even if I do I won’t pass the medical tests. By now I’m probably riddled with bloody cancer.”

Still blissed out, he hugs me and tells me to shut the f*** up.

For the next week, I neck much valium. Finally the call comes with my test results. The scans reveal I’m basically in good shape. Plus I have a strong PDL1. The oncologist says the lab people have written the word ‘strong’ in capitals. I’m on the trial with knobs on. Jonathan’s all I-told-you-so. I start to realise that lottery wins come in all shapes and sizes. We allow ourselves a glass of Champagne to celebrate.

A few days later I notice that my right leg has started to swell. Ruth – who has arrived from New York for a flying visit with our granddaughter – is worried. She’s read that lung cancer patients are prone to deep vein thrombosis. Ever since my diagnosis, she has immersed herself in everything lung cancer related. She’s awesome. It’s like having a doctor in the house. I should get myself to A&E right away. I leave it a few hours to see if there’s any improvement. There isn’t. My calf is solid. My leg is turning purple.

Jonathan isn’t around so son David drives me to the hospital. They have all my notes and I’m assessed straight away by the triage nurse. She agrees it could be a DVT. I am sent to another waiting area. 

“You do realize,” I say to David, “that if this clot goes to my lung I’m dead.”

He tells me to take it easy, but I can tell he’s bricking it. Everything is made worse because I’m sitting on a small hard chair with nowhere to rest my leg – which even with my limited medical knowledge I know should be raised. An hour passes and then another. By now my leg is turning into a great mottled tree-trunk. I’m really frightened. I throw up into the wash hand basin behind me. 

Five minutes later a junior doctor is introducing herself. It’s probably a DVT, but they can’t scan me as its Saturday and the unit doesn’t operate at weekends. She will give me some tablets to thin my blood and I should come back on Monday. David loses it. I watch him pull himself up to his full five foot eleven and get in the woman’s face. It’s impossible to believe this man with his hipster haircut was once the eccentric, precocious little boy who used to live on his favorite undercooked fish fingers and chips, which he liked to call floppers and floppers … that this is the same person who, aged nine wrote and illustrated a book called Simon’s Magic Toes, demanded we find him a literary agent and went off to the train station to get himself some business cards printed. They read: David Margolis, kids’ book writer. Now he’s a proper grown-up.

“No bloody way. You are not sending my mother home in this state. Look at her leg. Plus she’s got lung cancer. She needs to be admitted.”

Cowering now, the junior doctor consults her boss. I am admitted. On Sunday – despite the weekend rule – my leg is scanned. The clot is huge, running from my groin to my foot. My only thought is that my chances of being accepted onto the trial have been well and truly scuppered. Demented old ladies wander the ward all night mumbling and wringing their hands. I sob my heart out.

The next morning a middle-aged jolly hockey-sticks doctor presents herself at my bedside. “Right you,” she booms, “ I want you on your back, legs up resting against the head of the bed.” I practically salute as I obey. For the first time in twenty-four hours I feel safe. Doctor F pats me on the shoulder and says give it a couple of months and I’ll be on the mend. And she’s checked … it won’t get me kicked off the trial. I want to hug her.

That afternoon the entire family comes to visit. It’s granddaughter Dalia’s fourth birthday and we’ve bought her the most magnificent fairy castle cake. Ruth gets permission to bring it and candles onto the ward. Dalia climbs into bed with me and squeals with excitement as the candles are lit. What larks, having her birthday in hospital with her meema. The entire ward sings Happy Birthday. The girls hand out cake on paper plates and I remember a saying – something about taking joy from lower hanging fruit.

3 … 

The second catastrophe strikes a few days before I am due to start on the cancer trial. This has already been delayed because of the deep vein thrombosis in my leg.

For a couple of days I’ve been getting weak and breathless. I barely have the energy to keep my eyes open. The GP visits. She can’t find anything wrong.

The next morning I feel strong enough to take a bath. Dragging my great log of a swollen leg into the tub isn’t easy, but with J’s help, I can just about maneuver it. I manage to wash myself. But then I can’t get out. I have no strength whatsoever in my arms and legs. My whole body feels limp. I want to sleep. J can’t haul me out on his own. After some agonizing over whether it’s a bit over the top, he dials 999.

A few minutes later two strapping paramedics appear in my bathroom. Apart from the towel around my shoulders I’m starkers. I manage to be aware of how little I care. 

What happened to me over the next few hours remains a blank. Jonathan says I drifted in and out of consciousness. My blood pressure plummeted. At one point they could hardly find my pulse. J called the kids. He thought he was losing me.

Eventually I was blue lighted to hospital. Here they discovered that I had fluid around my heart, which needed to be drained urgently. I vaguely remember two boys in scrubs leaning over me telling me I was going to be fine and remarking that one of them was gorgeous – the image of George Clooney. I still don’t know if I said that out loud.

A day later the drain is out. I’m sitting up and taking notice and eating smoked salmon bagels and sweet and sour gherkins. J has posted pictures on the family WhatsApp group. Nobody tells me how I nearly died. More to the point I don’t ask for details. Apparently this is common in people suffering from shock. It will be weeks before my brain is sufficiently recovered to hear how close to death I came.

A few days later I’m back home. I have been prone to panic attacks all my adult life. Now each day is one long panic attack. My conscious mind still doesn’t know how ill I was, but deep down I get it. I’m convinced I’m about to die. My mind is full of deathbed scenes. Several times a day I feel on the edge of passing out.

One morning I decide to shave my legs. They haven’t been done in weeks and the hairs are positively thicket-like. Ruth vetoes the shaving option. I’m taking blood thinners and if I cut myself it might be hard to stop the bleeding and I could end up in A&E. She takes charge, nips to Boots and comes back with depilatory cream. I lie in bed propped up on pillows, legs on towels while she smears the cream over my thicket. 

There’s no problem with my good leg. The other one, still a massive thrombotic lump starts to sting. Then painful red weals appear. Pretty soon the leg is a burning scarlet log. My daughter, the amateur medic pooh-poohs the reaction and says it’ll settle down in an hour or two. It takes a month to heal. During that time doctors who see it, flinch. Ruth doesn’t stop apologizing.

I realize how much like me my much-adored firstborn is. Strong, bossy, always needing to be in control because she’s frightened that left to their own devices other people – in this case her father and I – will mess up. Maybe part of her thinks her time has come to assume the role of family matriarch. With that thought my spirits surge. Well if she does, she’s got a fight on. ’Cos I ain’t dead yet.

4 …

There is trouble with my offal. It’s the day before I’m due to start on the immunotherapy trial. I’ve just had a load of blood tests and the doctor in charge is telling me that one of my liver numbers is too high. The latest echocardiogram, on the other hand is normal. My heart, which a couple of weeks ago, was surrounded by fluid that almost killed me, is tickety-boo. It’s the liver they’re worried about. Unless they can get the numbers down, I can’t have my first infusion.

I decide the cancer has spread. The fates are determined I should never start this trial. The doctor thinks it’s all the Paracetamol I’ve been taking for my bad back – which I’ve had since ever. The plan is to put me in hospital overnight, whereupon I will be hooked up a saline drip to flush out all the chemicals. 

J and I take a cab to the private hospital a couple of miles away. The trial people are picking up the tab. My room has jazzy curtains and matching bedspread. Huge windows look out over a cricket ground. There’s even a balcony. A chap in a white shirt and black waistcoat brings us tea and shortbread. Everything is served on posh gleaming china. J climbs onto the bed with me. We watch Pointless on the telly, drink tea and make crumbs. 

“You all right?”

“Not really. What if it isn’t the Paracetomol? Suppose the cancer has spread?”

“It hasn’t.”

“How do you know?”

“I just know. Now eat your shortbread and shut up.”

J leaves. A nurse sets up the drip. I order a fancy-sounding chicken thing for dinner, but can’t manage it. 

All night the drip drips. I keep having to get up to pee, schlepping the drip with me. In the morning more blood is taken. A couple of hours later the doctor comes in to tell me my numbers are normal. I have cereal, two boiled eggs and toast for breakfast.

By mid-morning we’re back at trial HQ. We’re led into in a large, bright room lined with white leather chairs – the fancy sort, a bit like the ones you sit in to have a pedicure. Three or four people are already hooked up to bags of chemicals. One is asleep. The others are reading or have headphones on. It all seems relaxed enough. I instinctively make my way to a spare chair, but the nurse tells me that as this is my first treatment, I will be given a bed.

I’m glad to be horizontal. The pre-med has made me feel drowsy. Then the nurse appears with the bag. This is it. The bag contains the magic chemicals that could save my life. J grips my hand. 

“This is it. Can you believe we’re finally here?”

“Amazing.” I decide not to tell him that I’m convinced I’m about to have some catastrophic reaction to the drug and die right here, convulsing and foaming at the mouth.

But I don’t foam and die. Instead I order a strawberry and banana smoothie from the kitchen. It’s ice cold and thick, clearly not from a bottle. It tastes of heaven. As I sip, I watch the level in the bag decrease minutely. I’m also weeping. With exhaustion and gratitude. J whispers in my ear that it’s all going to be fine now.

I have my infusion every three weeks. The routine is the same. Bloods Tuesday. Treatment Wednesday. I always worry about the blood test results – that they will throw up some calamitous problem. But so far they haven’t. 

After six weeks I have my first CT scan to see how the treatment is going. I’m warned that sometimes tumors get very angry at being attacked. My tumor might get bigger before it gets smaller. I am warned that if this does happen I shouldn’t worry. It’s normal.

I’m not so much worrying as bricking it. In my book a tumour getting bigger can mean only one thing. My instinct is to run away – as fast as my cancerous lung will let me. But I don’t. Instead I show up for my CT scan and wait for the result. I would pace, but it makes me breathless.

It’s an hour or so before the trial doctor ushers us into his office. As we sit down I’m searching his face for signs of emotion. Is he delighted or sad? But his expression is neutral. 

He gets my scan pictures up on his screen.

“Oh…Kay…” Still his face betrays nothing. 

My heart is going like the clappers. “Yes?”

“It’s shrunk by half. In fact a little over half.” Here comes the smile.

I say the first thing that comes into my head. “What? You’re shitting me.”

The doctor laughs. “No I’m not. You want to look?” He turns his screen towards me.

I’m still too shocked to look. Instead J and the doctor go into a huddle to examine the pictures.

It’s made clear to me that I’m by no means out of the woods. My tumor was huge. Now it’s merely medium sized. 

J and I shake hands with the doctor. Then we walk go outside to wait for a cab. It’s not lost on my glass half full husband that the sun is shining. I turn my face up towards it. For the first time since this nightmare began, I have reason to hope.

5 …

I’m woken by a distant, heavily accented voice attempting to sing “Moon River.” The terrible singing gets closer. Now I can hear the chink and clunk of a trolley being wheeled in. Enter a small plump Filipina, her short back and sides do covered in a blue hairnet. She positions herself at the centre of the ward.

“OK,” she bellows. “Right hand up if you want porridge.”

Four of the six women on the cancer ward, me included raise our hands. My neighbor in the next bed asks me what I think would happen if we raised our left hands by mistake.

Breakfast is dolled out. “You want toast with that?” she shouts.

Finally, job done, our “waitress-commandant” disappears. “When the moon hits the sky like a big pizza pie …”

The cancer women are indignant. They’re complaining bitterly to one of the senior nurses about the terrible service. But the whole thing is so Kafka-esque, I can’t help laughing. It’s been a bleak week and the breakfast Nazi has made my day.

Almost a week ago I was admitted for a lung drain to my good lung. It seems that it is now protesting at what’s been going on and fluid has built up. The bad lung meanwhile is doing well. The tumor has shrunk by another centimeter.

A lung drain takes twenty minutes to insert. The lung is left to drain for a few hours. Once it’s finished, there is a CT scan to check all is OK. The whole process should take twenty-four hours max. I have been in hospital for seven days.

I was admitted on Friday morning and promised I would be drained that afternoon. I stressed how important it was that I am out the next day. My daughter, son-in-law and their kids are arriving from the US for my son’s wedding in eight days’ time.

The drain doesn’t happen. Since it was a Friday, I had a feeling it wouldn’t. Then comes the weekend. The radiology and scanning departments don’t operate. On Saturday evening the doctors take pity on me and say I can have day leave on Sunday. I go home, take a shower and spend a few precious hours with my grandchildren who have just flown in.

On Monday morning there’s more bad news. They still can’t fit me in for the drain. I burst into tears. Not something I am prone to do in public. I blub about the American grandchildren, my son’s wedding. It’s promised for Tuesday morning. 

I spend the rest of the Monday shopping online from my bed for sparkly wedding sandals. I’ve already sent back three pairs. Since the deep vein thrombosis in my left leg, my foot is always a bit swollen and finding stylish shoes that are wide enough is becoming a problem. As I wander around websites, palliative care doctors rock up onto the ward to talk to a couple of patients who have reached the end of the line treatment wise. The moment you hear a doctor telling you the way forward is to make you ‘as comfortable as possible’, you know you’re about to kark it. I reach for my headphones, to block out the death voices.

J arrives at lunchtime. I have a bit of a cry as I tell him that the drain isn’t going to happen until tomorrow. He says he’s going to see the hospital administrator now and demand some action. I beg him not to make a fuss. We’re in the middle of a row when the hospital chaplain presents herself at the bottom of the bed. There’s no dog collar, but she’s wearing black – like she’s got into her funeral gear early so as not to waste time.

Do I have any spiritual needs? 

Sorry, Jewish atheist. 

I expect her to take this as a hint to bugger off, but she doesn’t. Turns out she’s happy to chat to anybody, whether they’re believers or not. Lucky old me. But we end up gossiping about a mutual journalist friend and for a moment it’s all very summer drinks party on the lawn. Then I ask her about her job. What’s the question she’s asked most? 

“That’s easy,” she says. “Has God given me cancer as a punishment for being a bad person?”

“What do you tell them?”

“I tell them I can’t answer that.” 

I look at her. I have no words. Sick, vulnerable people, possibly at the end of their lives come to her for comfort and this is what they walk away with – the possibility that him upstairs is, indeed punishing them. I’m not going to confront her. I’m too tired and miserable. Somehow I manage to bring the conversation to a polite conclusion. Jonathan who has been sitting quietly, listening puts his arm around me and tries to excuse her.

My lung drain is finally inserted on Tuesday afternoon and I am sent back to the ward to let it do its stuff. By evening it’s done. All I need now is a CT scan to check all the fluid is gone. Then I can go home. This doesn’t happen on Wednesday or on Thursday. The nurses are full of apologies. There has been the usual breakdown in communication between doctors. Nobody is even sure if the scan has been ordered. The nurses are devoted, beyond kind and committed to the NHS, but each one I speak to admits that the system is broken. I have been bed blocking for a week, costing the NHS heavens knows how much, but no manager, nobody in authority has noticed. 

On Thursday night I throw a wobbly. A junior doctor appears at my bedside and I tell her that at one o’clock on Friday, eighteen members of my family will be arriving at my house for a pre-wedding lunch. Under no circumstances am I going to miss this. She speaks to her boss. A scan is ordered for first thing the following morning. I want to hug her.

Around seven the next morning, as I’m clearing out my locker, the frail old soul in the bed opposite toddles to the loo on her walking frame. I smile and say morning Beryl. She manages a wave. When she’s finished a nurse helps her back to bed – whereupon she has a seizure. Her entire body convulses. The nurse presses the call bell. Nothing. Then, forgetting to close the curtain she runs to get help. Moments later nurses and doctors come tearing in. Beryl’s bed is surrounded. The woman in the bed next to her, who like me is watching everything, has a panic attack. She comes rushing over to me. She says she can’t breathe. I get her to sit on the bed and I take her hand. Come on, you can do it. Just take some gentle, slow breaths. It takes a few minutes, but finally I talk her down.

Breakfast is served. Nobody seems to have any problem downing their porridge and toast with Beryl’s dead body a few feet away – although by now the curtains have been drawn around her bed. A few of the nurses refuse to hide their tears. Hugs are exchanged and it all feels very human. Then a couple of them go behind the screen with water and flannels and start the business of washing Beryl’s emaciated little body. There’s a student with them. He looks about sixteen. This appears to be a first for him. Judging by the expression on his face, the poor lad is bricking it.

I get my scan at ten. All is well. I make the lunch. But decompressing from the past week isn’t easy. That night I take a couple of diazepam.

Twenty-four hours’ later, still feeling a bit wobbly, but dressed up to the nines, hair cut, roots covered, nails polished, I am dancing at my son’s wedding…in the perfect extra-wide fitting, sparkly sandals.