What I learnt from the last year of my husband’s life

A shock cancer diagnosis for a loved one can result in a state called 'anticpatory grief'. Photo / 123RF

OPINION

When a loved one is diagnosed with an incurable disease, a process known as anticipatory grief begins. Jennifer Goulding reflects on her experience of it.

“They’ve found a mass in my lung,” my husband said when I answered the phone. Just like that the world slid away. When I think about it now, I see a magician performing the tablecloth trick. Life’s sleight of hand. Ta-da. A horror show.

He had been sent to our local A&E by the GP after experiencing recurring coughs and fevers. He had a history of good health, he was fit and strong. I wasn’t particularly concerned and stayed at home to look after our two-year-old and collect our nine-year-old from school.

When I found him in the hospital, now back in the waiting room he was pale and grim-faced. I took the seat next to him and helpfully proceeded to weep.

Presently we were moved to a different department and called into a small room where we were told the mass was almost certainly cancer. “Why? Why were they so sure?” I demanded.

My husband had his head in his hands. It was the shape apparently, it was speculated, the beginning of a whole new lexicon. “But he’s only 41,” I pointed out stupidly. The doctor shrugged.

No further questions could be answered until the hospital had scheduled, executed and interpreted a series of tests, which included a guided biopsy, a PET scan and a lung function test. We were spat back into the hospital car park armed with nothing more than the contact details of the specialist lung cancer nurse “in case we had any questions”.

In the agony of waiting, I turned to Dr Google, compulsively reading everything I could find on lung cancer, obsessing over statistics and “outcomes” (this is how the medical community describes the length of time the patient lives after diagnosis).

The websites of the various big cancer charities said I might feel shock, fear, anxiety, uncertainty, denial, sadness, anger, the list went on. I did. I felt all those things, but the neat boxes of these words did not speak to the eviscerating terror of my days, the impulse to peel off my own skin to escape or the screaming I had begun to do in the car.

Prior to my husband’s diagnosis, our lives had followed a privileged, but well-worn path. We met at a party when we were both 25 and immediately became a couple.

A few months later he moved into my flat. In time we bought a house together, got married, had a baby, moved again, and had another baby. We both enjoyed our jobs, him a software engineer, me a freelance journalist.

The sorts of things that preoccupied us were where to send our children to school and whether we could afford to move to a bigger house. Our lives were small and happy.

But they didn’t belong to us any longer. We lived in a place I now know is called anticipatory grief. I hadn’t heard the term until I came across a Twitter account belonging to Widow in Waiting, who was charting her experience of living with her husband’s terminal cancer. Even then I didn’t make the connection.

My situation was different, I reasoned; my husband might survive. But as Julia Samuel, the bestselling author, psychotherapist and grief expert, explains : “Grief starts at the point of diagnosis.

“So the moment you get a life-threatening or life-limiting diagnosis your perception of yourself, your world, your future and everyone with which you have a relationship, is in that moment changed and you grieve in a way for blissful ignorance.”

This applies foremost to the diagnosed person, but also to anyone close to them. It’s true. I remember the words: “I want my old life back,” running over and over in my head, like a chant.

Anticipatory grief is not an uncommon experience, not least because most people will witness their parents coming to the end of their lives. Yet information on anticipatory grief is comparatively scarce. We simply don’t know what to make of it. “I think what is important in anticipatory grief is that you have all the emotions of grief, but they are not acknowledged, or legitimised,” Samuel explains, “and also society, your friends and the culture kind of block you from talking about it and facing it.

Often the response is ‘don’t think like that, be positive’ because there is this magical, false thinking that if I love this person enough I can’t let myself think they are going to die.”

What all this meant for me was that I didn’t know how to exist. How on a granular level should you feel and behave when it’s likely your husband and the father of your children might not have much life left? I vacillated constantly between despair (he will die) and ecstatic hope (he will live). It was a type of madness. That is to say, I felt more or less mad.

This state was exacerbated by the changing landscape of my husband’s disease. At first, the doctors were positive, but new information, which arrived every few weeks, was almost all bad.

As the months passed, his odds looked increasingly poor. Despair began to look rational, yet I could not relinquish hope.

The vacillating grew more vertiginous. It was also totally normal. “How you live your days is by acknowledging the diagnosis and what it could mean and then giving yourself glimmers of hope so you can have as good a day as you can on the day that you are alive,” advises Samuel.

But what does a good day look like when your husband may or may not have terminal cancer? I didn’t have the answer. I still don’t. There is this terrible pressure to savour the time you have, to “make memories”, as if they could be hoarded as protection against the future.

However, life can’t be curated that way, especially when everything is viewed through the prism of looming death. Big days, birthdays, anniversaries and so on are harder because they might be the last.

As a private and reserved person, my husband also found the spotlight the disease put on him, especially on these occasions, deeply uncomfortable (for this reason neither his name nor his photograph are included in this article).

A bucket list, if he had one (he didn’t), wasn’t compatible with treatment. You can’t swim with dolphins when you’re having chemotherapy, you can’t swim at all because of the risk of infection and chances are you won’t feel well enough anyway.

But it didn’t matter. Everything was burnt away, purified leaving only what really mattered: who we loved. Our life before the diagnosis had been beautiful, so we tenderly picked it back up and wore it like an ill-fitting coat.

The unpalatable reality is that anticipatory grief is excruciating, and there is very little to be done about it. Therapy was useful, not least because I wanted to support my husband and to do that I needed somewhere to take my own feelings and worst feelings about his illness. It’s a cliche, but being in nature helped too.

It didn’t have to be anything grand, a stomp around our local common was enough. In that still but constantly changing environment I found an animal sort of comfort, separate from words and thinking.

In fact, not thinking turned out to be a surprisingly practical solution. I’m not talking about denial exactly, just putting it all in a box and doing something else. Being busy can be an anaesthetic, and choosing numbness can be a healthy decision.

Another tactic was looking for pockets of joy. Rather than attempting the herculean task of “living in the moment” (another hackneyed phrase), I decided to shoot for a more attainable target, small patches of forgetting: watching a TV show with my husband that made us laugh, or even something smaller like holding his hand or smelling the skin on his neck.

In those places I found something wonderful, even if it was bookended with breaking a plate in rage or panicking about his latest symptom.

It’s impossible to understate the importance of family and friends, as well as the wider community, including my daughter’s school, my son’s nursery and a colleague who commissioned a lovely work project and allowed me to take it at my own pace. I experienced their many acts of kindness as lights in the darkness.

They gave me a feeling of being held, and the love and humanity they expressed offered meaningful contrast to the awfulness of my husband’s situation.

As Samuel wisely says: “In all things to do with grief and loss it’s the love and connection of others that enables us to survive. People need people all of the time, but they particularly need them when they’re in extremis.”

I do have regrets. I wish I’d had the opportunity to sit down with someone going through the same thing. I think there would have been some sort of solace there. I wish there’d been a body or even piece of writing that spoke to our condition, not a self-help book, but something wilder and more expansive. I wish I’d known Samuel’s book Grief Works and the app; both have sections devoted to anticipatory grief.

I wish that before my husband was diagnosed I had read With the End in Mind: How to Live and Die Well by Kathryn Mannix, a palliative care doctor who is brilliant on the taboo of death and dying. It felt impossible once we knew he had cancer, though I give deep thanks for the short video she made with the BBC that explains the dying process in simple terms.

I wish that when we wrote our wills we’d talked frankly about what we’d want if either of us were to die young. These talks are so much easier when they are speculative.

On a practical level, I wish we’d looked more closely at our financial arrangements, and I wish we’d shared our passwords. I put this moment off again and again until death was very near, and even today, more than six months later the moment of asking him fills me with a hot, visceral shame.

Anticipatory grief is a thief, but it does allow you to have the big conversations. They were terrible, like probing a suppurating wound, but they were also pure, distilled love. There was something transcendent in those exchanges. They seemed to exist somewhere outside the constraints of time and place, and the prison of our bodies.

The end of my husband’s life came very quickly. I didn’t realise that could happen, that a person with cancer could deteriorate so suddenly.

Even so, anticipatory grief had afforded me some strange form of acceptance, and I think it allowed me to focus on what he needed in those remaining days, rather than what I wanted, which was for him to stay as long as possible.

It doesn’t diminish the pain. What could? But it did allow me the grace to let him go when he was ready to go. I’m glad I gave him that gift.