The Unravelling

““I will cut adrift— I will sit on pavements and drink coffee—I will see the Southern hills; I will dream; I will take my mind out of its iron cage & let it swim—this fine October”. Virginia Woolf

Virginia Woolf wrote this in her diary on October 15th 1930. The Vice Chancellor of my university put it on her LinkedIn yesterday and I thought, yes, if I had that weight of responsibility on my shoulders I’d feel like this. In fact I have probably spent most of my busy career dreaming of time off in this way. Of having time to let my mind unlock and unravel. To drift. And now that time off finally comes. A year off no less but, until now, not much time to drift.

But what do you do when all activity ceases and it’s just drift? When the words and the actions run out? In a way the shock of Having Nothing To Do after thirty years of frantic activity is more dramatic in its silences than the rush of endless hospital visits. I’ve spent nearly ten months carried along in the fast current of things-and-places-to-attend to save your own life. Like being caught on a rip tide I have adopted the livesaving advice to ‘lie on your back and float till you’re out of danger’ approach. Now I am spat out on the other side. Set adrift. This part comes with no instructions. Or rather, no instructions but quite a lot of good advice. ‘Rest’ (but stay active), ‘don’t worry’ (but stay vigilant), ‘stay well’ (but remember it’s incurable and it might be back). Enjoy yourself (but not too much!). All this good but contradictory advice (and more!) I receive daily from friends and medical professionals. So I stop but carry on.

Having worked hard since I left university at 22 I have barely known what it’s like to stop. On the rare occasion when I have it’s been to study and I’ve simply replaced one intense activity with another. After three masters and a PhD there are likely to be no more extended study breaks. I’m in the enviable position of not having to work due to excellent income protection insurance (get it for you or your kids) but I am only 52 and I have a lot left to give. So I probably will. In fact, you might say I am in my prime. The idea amuses me as I sit in the hospital waiting room treading water and dealing with the ongoing aftermath of stage 4 cancer. All the experience, expertise and confidence I could have wished for at 22. A do or die attitude to most things. A little compromised on energy. A little curtailed in my freedom to travel and go at things with the same energy. And frankly…a bit bored.

I always tell my kids that only boring people are bored. ‘It is impossible to be bored!’ I declare. Find something to do!

I plan to write a book but always at this stage the project slips away as normal life presses in and the sense of urgency passes. I have started to write about creativity and healing. But what do I know? Only what I do. I’m painting as if my life depended on it but soon I’ll have to give all my canvases away just to make space in my little riverside cavern of riches. I walk. I see friends. I drink (decaf) coffee. I go and see films at the gorgeous new Everyman in the morning. I know all of the staff to chat to. I was furiously writing my inaugural professorial lecture. 100 or so people were coming. And then at the weekend an itchy hive appears (often acquired through my gluten intolerance/weakness for croissants or almost anything made of wheat). It then turned into an angry red raised patch the size of a dinner plate which I recognised as cellulitis. Last time I had cancer 7 years ago this nearly finished me off and I was in hospital for 10 days. So off to A&E, a cancelled inaugural and an enforced period of go slow. Is my body/the universe trying to tell me something? Almost certainly.

It’s an elegant, artistic sort of unravelling I’m trying to fashion here. I mustn’t grumble as I am aware of the immense privilege it is to be on sick pay without much real pressure the other end. With choice.

My mother ran a secondary breast cancer group and some of the ladies I met were on their own with no financial backup. Back to work in no time and pushing through the sickness, pain and fatigue. I am lucky. And spoilt. But I want more. I want purpose. And purpose can drive you nuts. Throwing yourself at causes.

I recently reconnected with an old acquaintance from Cambridge, met through the student union when we were 19 and wanting to save the world (although as he points out, not many there really needed saving). He is in a similar position. We discuss what is enough. What is this purpose we seek and how do you justify the advantages you have been handed, sometimes against the odds? We don’t have any answers but it’s been good to talk about it with someone who understands.

I’d like to take the advice of my Buddhist friends, just to be in the moment, not always looking backwards or forwards. The crisp Autumn days afford me this luxury when I can find the space to look up and see beyond my immediate situation.

Today, as you may have gathered from me writing at length, is a long hospital day. A big one. My first full body PET scan since the miracle one in the summer. I am nervous. Not least because there is a young woman there who operates the scanner with the world’s worst poker face and I can always judge the outcome of the scan by her reaction. I had to fast for six hours before so was up early to stuff my face (I don’t deal well with the no coffee or comfort food situation while I’m waiting around). I have four appointments in total today – bloods, injections, scan and oncologist. I’m recovering quite quickly from the quick nasty bout of cellulitis that put me in A&E at the weekend. Friends seem surprised that there are still issues but don’t seem to understand that at this stage (Stage 4) that there is no post cancer. Their love/optimism/good will has them forget the detail. Gone for now but not completely gone. A dormant volcano. Incurable. I even have to remind myself and adjust my expectations. My mind is definitely chained up in its iron cage today. What can I find to unlock it?

STOP THE PRESS – scan fucking cancelled due to missing supplies of radioactive dye. Well this seems to be the theme of the week. Came all the way to the hospital for what? It took four months to get this scan and I had to really fight for it. Fuck. No reschedule in sight. I can’t explain how frustrating it is or how many weeks and sleepless nights go into preparing my head for these scans. How much you put your life on hold with half a thought that what happens after, what you can plan, what you can manage depends completely on the outcome.

I’ve left the hospital with the hump and 2 and a half hours to go till the next appointment. Gone for a conciliatory Full English at the comfortingly ordinary cafe on the Fulham Palace Road. It takes the edge off my righteous, bitter anger.

A small child in the lift bounces her ball. Maybe she’s been bought it by her doting Muslim parents. I marvel at how happy she is and tell her I bet she can be cheerful anywhere. She cheers up the whole lift with a smile and a wave goodbye. I remember that our natural state is like this child. Happy in the moment bouncing a chaotic ball in spite of the confined space and knowing she is loved. It should be enough.

UPDATE on the UPDATE! Scan reinstated at the Marsden for Thursday. The NHS is broken and brilliant in equal parts. I stopped moping and decided to be cheerful to everyone I met and it came back at me in bucket loads. Amazing people from the shop staff to receptionists, volunteers, pharmacists, nurses all of them. So much kindness it made me have a little cry. And oh shit I forgot to pick up my meds. Oh well. Next time.