The wall planner

How buying a yearly planner made me reflect on my husband’s cancer survivorship.

I’ve ordered a wall planner. It’s coming today. I realised we needed one as we have a lot going on this year: dinners and shows and trips. A family wedding. A friend’s 60th birthday meal. Music festivals. A trip to Greece. Weekends in London and Oxford to see the kids. Some building work on the house. All this alongside our work commitments. We will need to be on top of our dates. How lovely to have so many things to look forward to.

Before I ordered, I needed to check the size of the last wall chart we used. I popped into the utility room where it sits on a narrow section of wall to the left, behind you as you walk through the door from the kitchen, beside the shelf where all Den’s medicines are kept. It was then that I froze. My heart lurched, and a coldness spread through me. I stood and stared at the existing wall chart that I had not got round to removing. It was the 2019 chart.

I haven’t bought a wall planner for 6 years.

There were the boys’ university term dates. Anna’s school ones. My annual leave from work, marked out with coloured stickers. The trip to Egypt in August. And then, from September, nothing. Absolutely no entries.

September 10th 2019 was when Den was diagnosed with oesophageal cancer. And seeing this chart, and realising I had not used one in all that time, brought home to me what cancer had done to our family.

It’s like time stood still for us. Of course, we have still done nice things in the last 5 years. Much has happened, aside from Den's cancer journey. The boys have graduated and got jobs. Anna is now in her final year at University. We have had holidays, managed to find nice things to do, when he was well enough, to remind us to still live life, and provide a distraction from the medical stuff. But what we haven’t been able to do is think ahead and map out our lives.

Good things come with that. We are better, now, at living in the moment. Noticing the here and now. Relaxing without guilt, sometimes. We both found that impossible before - busy professional roles and family life blended together into a fun but frantic, and sometimes barely managed, schedule. Life is simpler now.

But the fact remains that we have not been able to face planning very far forward since Den’s diagnosis with a cancer known for its dismal prognosis.

Cancer survivorship: so much better than the alternative of dying from it - and survivors guilt is real. But survival comes with some changes to how you live life. And this is true for both the sufferer and their loved ones.

We all know we are mortal. It’s the only certainty in life. But we don’t tend to think of it day to day. We know we will die some time in the future, but we hope for a distant future. We see others dying - scenes in the news of war, murders, celebrities who have died. But it’s other people, not us - or our loved ones.

When Den received his cancer diagnosis in 2019, the outlook was very poor. I knew I might not still have him in a year. We preferred to look back at the joy of memories, rather than forwards. We used our energy to search for solutions, grapple with the financial and practical issues a life-threatening diagnosis brings. Trying to retain some control over his journey.

There are stages to living with a life threatening illness, much like the stages of grief. And it’s not a straight line, as you go back and forth through these stages, according to what is happening medically at any given time. It starts with disbelief. Then you begin to get your head around the diagnosis and go into survival mode, looking for solutions, making big decisions about treatment, small decisions about how he can get through the day most comfortably. You lurch from hope to despair, and back again. You both change your lifestyle: him out of necessity, to endure the effects of the cancer and the treatment. Me so that I can function as his carer and find headspace for all the new emotions: the anxiety, fear, anger, guilt.

And over time, you overcome despair and find a balance between optimism and reality. You acknowledge the negative emotions so that you can sit with them rather than fight against them. And when, as a couple, you have begun to deal with, and accept all these negative emotions, you begin to look outwards again. You make short-term plans about changing work patterns to fit with the new normal. You make more effort, when he is well, to do new things, connect with loved ones, travel, find creative outlets.

Further down the line, after initial uncertainty and fear about his medical care, you are at peace that the right professionals are around him and he has had the best treatment available. The anxieties about his illness remain, but they change as he makes the gradual transition from trying to survive, to living with the consequences of the treatment. Having accepted it and learned to keep it in a realistic perspective, fear no longer suffocates us.

We are both changed by this experience. There are physical challenges for him, that he has had to accommodate into his daily life. The reduction in the number of hospital appointments, now he has passed the five year mark, leaves us with a strange mix of elation and abandonment - when in 2019, we hated juggling all those medical encounters. I have had to come to terms with the possibility of losing him on a number of occasions. We have both needed to find a new normal, individually and as a couple. But we have done that, and in doing so, have found a renewed enthusiasm for life, as, having faced potential loss, we both have a sharper awareness of life and what is important.

And in buying the new wall planner, a little part of me is scared. Am I tempting fate by mapping the year out? The last time I did this, as my 2019 wall planner shows in stark blue and white, everything ground to a halt. Can I bring myself to trust in the future? Well no - not fully. None of us can, can we? None of us knows what is in store for us - thank goodness. Ask yourself, would you really want a crystal ball?

But when the planner arrives later today, we will sit down and write down the year we hope for. I will finally take down the old chart, and replace it with this one. I don’t think I will throw the old one away. It feels important. Sitting as it was in the utility room, I have walked past it, unseeing, every day for more than five years. But it’s been there, all this time, a constant presence, as we grappled with Den’s suffering, celebrated the successes, and found a new intensity in the good times. Replacing the wall chart feels like a way of marking our emergence from a shrunken world, to embrace the bigger one again. We’ve accepted the threat to life that disease holds, but in doing so, embraced life more tightly. Gratitude now takes up more space than fear. And life is good.