by Ben Graff
Mum had said to me years ago that the trouble with life was that it was easy to be too busy or not busy enough, but getting the balance right was much harder. Dad hadn’t wanted a big project after his job, but maybe he needed one. There was a slight rootlessness to his retirement. Of course, it would have been different if Mum had been there.
He could be dismissive of both people and ideas. Sometimes he didn’t seem able to tolerate bright people particularly well, fools even less so. He could put up barriers without being aware that he had, and would then be surprised that others could not reach through them. But on that New Year’s Eve, many of these challenges were less visible. His more playful side, often to the fore at this time of year, was so once again.
None of us, least of all he himself, knew that as we watched the fireworks and drank the Prosecco he was already terminally ill.
2014
Part 3
Endings
Every bit of news had been worse than the last, and it was terrible to start with. Those few months from which there was no escape, or rather there was but it was not the escape he would have wanted.
Bowel cancer, in the liver, in the lungs. Perhaps not bowel cancer – primary site not obvious, the outside of the bowel perhaps. Unfortunately, it makes no difference.
“It is not uncommon not to find the primary,” the consultant says. But it is not in the lower bowel, we know that much. A nurse examines this a few weeks in and tells him it is clear.
“All I can tell you is that there is no cancer here,” she says.
He goes home and drinks wine to celebrate with Sheila. The last glass he will drink, I would guess. They have danced down the hospital corridor together, literally apparently.
He phoned me with the news while I was driving to him and I have to pull over to think. Torn, I had adjusted to one thing, in a way, and this is now different. I should be delighted, but I know it can’t be right, that a mistake has been made somewhere. Something has been misunderstood or miscommunicated, and so it proves. The nurse is an idiot. The cancer is not in the lower bowel, but it is everywhere else. “Someone should speak to her,” he says, shaking his head as another door closes.
All of this was only weeks ago but it has already taken on the aura of a distant memory; it has no relation or relevance to the here and now. On this autumn night through which the elements are pointing toward winter we are together in his house and I am his sole carer.
“Don’t leave me here by myself,” he says, which frustrates me. I have sat on the bed with him before, to be told that he is tired and needs some peace to sleep.
It is hard to guess at what he might want. I am not really the answer. He would want it to be Mum, but that is not possible. So many other things no longer are either.
“I like the sound of the rain on the roof,” he says. “It’s soothing. All these years I’ve lived here and I had never really listened to it until the last few months. You know?”
I am still surprised by any display of openness, even if it is only about the weather and how it makes him feel. A slight chink, that in many ways does not bode well, but the connection counts for something.
His world has receded. He is more of this house than he has ever been, no longer really awaiting news of men and great events.
It started raining when I was a few miles from the village and it is heavier now. I hold his hand on the bed. It feels thin and warm. There are pins and needles in my wrist, which is rare but does happen from time to time. He smiles at me.
“Well, here we are, then,” he says. “We should probably pass on the drinking and the nightclubbing tonight.”
“Maybe just a quiet one,” I offer, and he smiles again, then he sighs.
“What a life,” he says, shaking his head.
“It’s been good, Dad, hasn’t it,” I say, not really as a question.
He rolls his eyes and he grins. This is what we have come to. Even if he does try to open things up, I close them down again, the alternative too scary. It is almost automatic, a well-trodden groove for us both, but for all that, there is a closeness now.
Helen, then Mum, his parents gone, working his way up, getting fired, falling out with the neighbours, meeting Sheila, getting cancer. It is a life that has been lived with its share of happiness and sadness, disappointments and setbacks, but it must be the richer for that, just not necessarily any easier.
“You boys are everything,” he said once in a hospital ward or corridor, I can’t remember where exactly. Perhaps there was more intimacy and openness than I thought, much like when Martin’s father told him once that he only felt safe when he was around.
Yet, for all that, I wanted more, more than was going to be possible, checking myself because I did not want to make things difficult for him, was scared of where openness might lead.
The Macmillan nurse said that we had to respect how he was going to do this. She had him sussed after one cup of tea at the dining room table, at least insofar as a cancer nurse does when categorising her patients by type.
He probably wasn’t going to open up much, she said. Not really. Who he was and how he was. It was not that unusual for someone in his position to still be focussed on getting better.
“We often see this,” she said in a voice devoid of any judgement. A lot of people want to do what they always did.
Why wouldn’t they? I read on the internet that the majority of terminally ill people never fully accept that this is what they are.
The clock has run down as we have watched Match of the Day and The Big Bang Theory. If there are things you want to do, let’s do them now, I would say. “Just this,” was always his answer.
For all that, there have been lots of visitors over the last few months. Mike has been twice, his ex-wife Janet and their daughter Francesca.
“He hasn’t got long,” Janet warns me, “two weeks at most.”
A former neighbour has popped in and they work on a jigsaw puzzle together, both engrossed in the task. His only concern in the moment separating out the edges and looking for shapes that fit, bringing order to chaos. Friends from work also visit; he has told me who I should phone to organise that group, when the time comes.
But this is not where we are at this moment, as I sit on his bed holding his hand as we listen to the rain.
“Just be with me,” he says again and I am, but in some ways I am not. He is terminally ill, I am not. I feel both guilt and relief, mainly guilt, which in part stems from a sense that I am somehow strengthened by his weakness, if also diminished; much of what is in the house and around him only means something because he is here. At one level it is impossible for anyone to be with him, to really experience what this must feel like, to fix it. I’ve told him that anything can happen. None of us know for sure. He might outlive me yet.
“You are not going anywhere,” he has said with a confidence that surprises me. He has gone, in a few months, from well, to not being well, to dying. But some certainties remain, at least for him.
In the summer the thought of him making it to Christmas had seemed implausible. Then things had changed. Palliative chemo was a borderline call that made a difference.
“It’s up to you,” the consultant in Cheltenham had said. “If you are going to start this, you need to do so today, right away.” It was all about trade-offs between time and wellness.
“I just hope it doesn’t make things worse,” the consultant says. Could it be worse?
“What do you think I should do?” he asks us in the waiting room, once he has finished writing Sheila a large cheque, now he knows the best guess is weeks. That was how he was with money, always generous, always wanting to share it with those around him. I knew in many ways he was a more generous person than I am.
He knows what he wants to do; it isn’t really a question. He wants to try. Finally, he is being offered something: a con
crete plan, a way forward, steps away from his current predicament. It would be impossible to say anything other than “let’s go for it”, to support him in his choice, one of the few still open to him, one of the few gifts left that we could give him. He had seemed better almost immediately.
The week in Cheltenham was followed by day patient treatment in Hereford. You have to phone up and confirm you are coming in on the morning of your treatment as the toxins are too expensive to make up for people who don’t show.
It was more than a placebo effect. The data showed the cancer receding in some places. The consultant was pleased.
In early October, things seemed possible that had not before. But even in the brief Indian summer there were warning signs. He struggled to urinate. He tried wearing a catheter and not wearing a catheter. It is not the cancer but a prostate problem. He explores having it fixed. It is difficult for him to hear the explanation as to why this is not possible; some test results on his heart have come back. He is told they are not good.
“I can’t take more bad news,” he says and won’t pick them up. We have permission to talk to his doctors about everything else, but he doesn’t want us to talk about this, twenty years on from his by-pass. He feels less well and agrees to a break in the chemo, just to get his strength back.
As we sit on the bed, he tells me that he can’t eat anymore, but dreams of food. Even sweets and Rennies make him gag now, jelly a thing of the past, and he has dropped the pretence of even playing with toast and cereal.
Increasingly I notice that he seems to be drinking less too and will yell in pain when he does, though he pretends he has not reacted at all.
He will not consider being anywhere but home. He is going to manage this his way, on his terms. I try, not for the first time, to coax him to go into a hospice.
“Just to get checked out, to see if there is anything there that might help you. What harm can it do? You don’t have to stay there or anything.” He is sixty-eight. He was young until a few months ago. A hospice was not a part of his thinking.
He surprises me again, saying that he will go, just for a day. The last plan we will form, never to be executed. He feels ill and I help him manage the bathroom.
“You are a good lad,” he says with a grin that speaks to a different him. Not acting, not so guarded, more at ease, no pretence.
His glasses glint against the fluorescent light and his face for a moment looks younger, fuller. His accent with a stronger trace of cockney than normal, which is to say just a little. For a flash I see him as his parents might once have looked at him, and then the moment passes.
“I need to sleep,” he says and I help him into bed, Radio 5 on in the background, as it always is. The last night either of us will spend in this house, even if we don’t yet know it.
“Call me if you need anything,” I say.
“Look in on me in the night,” he says, something he must have done for me so many times when I was young.
I go into my old bedroom to sleep, phoning Katharine to say I think he is struggling. We are struggling. I am surprised by both my stress levels and the wave of tiredness that now comes over me. More care is needed. We are not winning but we must make this work. The hospice will help and finally he has agreed to go. Just to get checked out. In the night I look in several times and he is sleeping peacefully.
In the morning, I go in again and he is awake. He drinks some water and winces. His stomach is a problem. He tells me he feels ‘very odd.’ We agree he should rest in my bedroom and he puts his arm around me as we cross the hallway very slowly. But he is smiling, jocular almost; this is not a difficult moment. He leans some of his weight against me but he is steady. There is no hint that these will be his last steps. At the edge of the bed, he slips to his knees.
I say, “Just take a minute and we will get you up. Tell me when you are ready.” He nods. There is no problem if we don’t admit to one, but the longer he takes to move, the more I begin to fear that there might really be a problem. Yet he is still communicating normally. He is worried about the bed sheets in his room, and asks me to take them to the utility while he gets his breath.
“It’s fine,” he says. I take the sheets downstairs, marking the stairway wall as they brush against it in my haste, making a mess.
I feel a sense of panic rising.
He is less calm when I get back to the bedroom. He says he can’t move. He yells for me to get Jane and I call her. These will be the last words he ever speaks.
She is round in minutes. He just looks at me, right at me.
“Dad,” I say, “Dad.” But he doesn’t answer, just goes on looking.
I don’t know whether he can hear me or not anymore. I don’t think to ask him whether he can squeeze my hand. A year or so later it will occur to me that that is what I should have asked him to do. I don’t know the precise moment when he drifts out of consciousness as he wedged kneeling by the bed.
Jane phones an ambulance. We struggle to lift him from his knees and onto the floor. He is heavy and it is not easy, for all his thinness. We have to wrestle to break him free, to get him on his back on the bedroom floor.
Over the phone we are instructed how to do CPR. Very calm, as if they are in the room with us, which in a way they are. I push at his chest, and again.
A helicopter lands in the field and a team is here. They are young, accomplished looking; they are his best chance. I notice how much more forcefully they press than I had. He is more alive than when the emergency team had arrived for Mum. There is considerably more activity, if not any more hope. Not really.
We go downstairs whilst they work. Matt is here too now. I know it is the end, that all of the effort upstairs is an illusion. I know how this will end. The terminally ill rarely survive a heart attack, I have heard somebody say before. The medics emerge eventually to tell us that they had got a trace on his heart. But it was just their equipment.
They could take him away to the hospital to keep going but they didn’t think it would help. What did we want to do?
There was nothing left to do. A Chinese doctor came later in the day to issue the death certificate. It made me think that for all of us there will be people who enter our lives just after the point at which, for us, it ends. In some way I was strangely comforted by this. A part of how things are, people with us even after we are gone. Then the undertakers arrive. Big men in formalwear. Black gloves. They take his rings off. Matt puts one on, me the other. Unlike Mum, they make sure we don’t see him being carried down the stairs.
We burn his sheets and his mattress in the garden, his ruined pyjamas. Think how to make the house secure, now that he can no longer protect it. Automatic pilot or whatever kicks in. But there, standing by the fire, his body on its way to the funeral parlour, I thought there might have been a moment I had missed, had forgotten to mark, where he crossed over from us back to Mum. There are always other journeys, both real and imagined, either side of death.
The priest, who soon concludes that we are a bunch of heathens, implies as much in his funeral sermon. “When I met Colin, it was too late to talk to him about God, but who knows what reflections he might have had at the end?”
It doesn’t matter. We say the things about him that need to be said. The priest has allowed him to be buried with Mum and we have done the necessary to facilitate this. You could have got long odds at the outset, for the final resting place of this London-born Jew.
Maddie’s Memories – Sponge Cake and Wheeler Dealers
We are on the Island, at The Crown, near Sharwell. It has a stream that runs though it which is filled with large trout. They have swum here for as long as we have been coming, which is since childhood. We always do the same thing: a meal here and an afternoon at the beach under a beating sun. As we walk through the gate I can see all of them. Martin ordering a seafood platter, expertly breaking up pieces of lobster that have been
mixed with prawns, Anna sipping on half a cider. Mum and Dad fussing at the menu. None of them are with us now, except in my memory.
I ask Maddie if she will write something for this book and she sits on the swing and texts me her thoughts. Later, after a kick goes wrong, Francesca will have to rescue her football from the stream, and then there is a near miss when walking from our car to the beach. Gabriella will want an ice cream and we will calculate how much insulin this will take. Normal things really, another day at The Crown to add to the memories, but Maddie’s reflections are what will stay with me most.
* * *
One of my memories from Herefordshire was when Annabelle, Reuben my cousin, and I were together in Grandpa’s field which is next to his house. We were just chilling when Basil the really cute dog came to join us and we played with him for a while. All of a sudden the neighbour’s horses, Teddy and Solomon, came rushing in from the other side of the field with a person riding each one of them. Then, someone’s quad bike came into the field and started riding around really fast. The horses were going crazy being chased by this machine and running super-fast around the field. Of course, Basil joined in. Reuben, Annabelle and I were still in the field trying to run away but kept nearly getting hit by the horses or run over by the quad bike. When we finally did get out, we got shouted at like it was our fault by Reuben’s mum, but oh well. It’s funny now looking back on that memory because of how much fun it was.
I also remember the last time I saw Grandpa. It was just me and my dad going down to visit him for the last time as he had severe bowel cancer. I remember giving him a hug as I came in, but a little too hard as I remember it hurting him as I was only waist high. I remember talking about old memories like his old flying toy bat with glowing red eyes we would all pester for him to get out. I remember that I brought this bag with me with lots of designs on, which was made out of special material that was blank that I coloured in with these special pens while watching TV with my dad and Grandpa. I remember that we always used to watch a programme called Wheeler Dealers which was about fixing up cars and selling them. We all loved the programme and we watched so many episodes before bed.
