July was a month of mixed emotions. I learned that I had passed the first year of my MA in Creative Writing with merit. I also learned that my ovarian cancer had bubbled up again in some small peritoneal deposits, necessitating the start of a new course of chemotherapy, which I began on 20th July. All things considered, I have enjoyed an amazing quality of life since my diagnosis in November 2015, which was followed by 6 cycles of chemotherapy and a further year on the maintenance drug Avastin; I went from not being able to climb the stairs in November 2015 to skiing on the Kitzsteinhorn glacier, Kaprun (3000 metres) in January 2017. Since completing my Avastin in February, I have been on ‘watch and wait’, having been told that recurrence is almost a certainty with my type and stage of cancer, but that they could keep retreating me again if required. The CT scanner found it in June, although I had no symptoms. On with the ‘treats’, then…
I suppose this officially puts me into ‘battling’ territory. Those who know me also know that I hate this term. The phrase ‘lost their battle with cancer’ is trotted out unthinkingly; I don’t like to think of ever losing. I am living with cancer, as are many people, just getting on with the things you enjoy and maximising the moments when you feel you will live forever. It is the same as for any chronic condition, like heart disease or diabetes; you carry a cloud with you, but you live for when it floats off. There are times when it’s the first thing you remember when you wake up, and there are times when you are so distracted by nature, music or any kind of creative work that it disappears completely. In the words of Winnie the Pooh, ‘every little cloud always sings aloud’, and my singing and harp playing have offered me these special moments, as have the many hours spent with friends and family, my local walks and walking holidays and a perfect skiing trip to Zell am See that I never thought I’d have. I’ve played the harp in the grounds of Levens Hall, I’ve walked Scottish beaches and posed with Robert Burns at the Birks of Aberfeldy. And I’ve climbed my 200th Wainwright top in the Lake District, the wonderfully named Great Cockup.
The first course of treatment had enabled me to reclaim my life, and news of the recurrence meant some grieving had to happen. So far, the chemotherapy has been manageable, and I won’t lose my hair this time, but it has been a shock to go to it from feeling well, and there are some days when I feel very fatigued; at times it seems as if I am operating at altitude. Yesterday I felt slightly drunk in charge of a shopping trolley. I don’t feel ill, and on many days I can operate as normal, go out walking and meet the friends who cheer me up. But there is a need for more rest and quiet time. Everyone says I am very positive, but inevitably dark thoughts also have to be processed.
The cancer treatment world is very surreal. I have seen the very best of the NHS, have chatted to many ‘brave’ and ‘positive’ patients and have recognised how much I owe to the chemotherapy drugs, but I can never get over the fact that this clear liquid dripping into my veins, which comes with so many health warnings and arrives personalised for me in a yellow carrier labelled ‘cytocoxic’, is the thing that is needed to ‘help me to live well’ – this is the slogan on my chemotherapy record booklet, and it’s a good one (much better than battling!). Even after 25 visits to the oncology unit, I am still pinching myself wondering if it’s all a dream. From talking to other patients, we’re all like this. It’s not me in here, is it?
Good as the NHS treatment has been, I realised at an early stage that I needed more than cytotoxic drugs to get me through it. In July 2016 I attended a course run by the charity Penny Brohn UK ‘Living with the impact of cancer’ – their emphasis on healthy eating, exercise, meditation, mindfulness and taking control of your own health and wellbeing perfectly complemented the conventional treatment I received. Once again, I met many inspirational people and enjoyed the exchange of thoughts on how we deal with a new way of life that has been forced on us. The course principles all involve very simple things – and indeed turning attention to how you can live better and more mindfully is common sense, whether you have cancer or not.
So what of my writing? In the past year it has been very much about writing for myself and not about sharing and tweeting that I’ve written something. It’s been part of my mental processing to be a bit more private. Also, if I publish work here, I can’t enter it for competitions. When I opted to start the Open University’s new MA in Creative Writing in October 2016 (module A802), I decided to pick poetry as my first genre with fiction second, as I felt I had more to learn about poetry and that it would offer me greater variety. Also, I have met poets locally at workshops and readings, and it is more sociable than trying to churn out a plot and redraft a novel! The OU course is all distance-learning, and work is shared with your tutor group via an online forum. Our tutor, Wayne Holloway-Smith, dropped in from time to time with mainly encouraging comments and some remarks to make us think, and gave us very full feedback on our assignments. We all started off writing about waves breaking on the shore and sunrises, but his key comment was ‘Why should the reader be interested?’. I have carried that thought with me all through this year, and if you are still reading this blog post then I’ve succeeded in addressing this question.
Of course, it’s a disadvantage that you never meet the people on the course or know what their voices sound like, but on the other hand you can choose just how much of yourself to reveal, and the drip-feed of information about people and their backgrounds that came out in the poetry generated throughout our year together was fascinating. We all got quite good at giving each other feedback. Our ages ranged from 20+ to 60+, with more, I have to say, in the older category, full of life experience and inevitably touched by sadness as well as joy. I did not set out with the purpose of writing about my cancer, and indeed I enjoyed keeping it quiet in the first term. After Christmas we encountered Confessional Poetry, and it was finally time for me to write about the chemotherapy room. The readers were interested; I had followed another tutor tip and exposed vulnerability. The news was out and, in the end, my poetry sequence for my end of year assignment reflected on illness and mortality. I was inspired by Jo Shapcott’s collection ‘Of Mutability’ and the way she described her experience of cancer in a very understated way, without even mentioning the word. The title of my sequence ‘The Pavement Rippled Under My Shoes’ is a quotation from her poem ‘La Serenessima’. Since then, I have discovered other poets who ‘write their cancer’ and have been reading Anthony Wilson’s wonderful collection ‘Riddance’ about his diagnosis and treatment for lymphoma. He writes here about Jo Shapcott’s ‘Of Mutability’ https://anthonywilsonpoetry.com/2011/03/02/book-review-of-mutability-by-jo-shapcott-2/
Recently, I picked up an anthology ‘The Poetry Cure’ edited by Julia Darling and Cynthia Fuller, which I took into the chemo room last week. Julia Darling, a poet and Fellow in Literature and Health at the University of Newcastle upon Tyne, was involved in many projects seeking to improve communication between doctors and patients. She died from cancer in 2005 shortly after completing her work on this book, which she wanted to be available in hospital waiting rooms. She writes in her introduction:
‘I work with doctors and patients, and run workshops for the growing numbers of people who are interested in the healing powers of poetry. I got involved in this kind of work through my own experience. I have advanced breast cancer, and poetry is what keeps me afloat. Without writing and reading poems my journey through chemotherapy and radiotherapy and the general ups and downs of illness would have been unthinkable …. I think one of the hardest things about being unwell is feeling disempowered and out of control. Writing poetry can make you feel in charge again.’
I had better sign up for the second year of the MA course. But before I do, I conclude with two of my poems from ‘The Pavement Rippled Under My Shoes’.
Sword Dance 1
X marked the spot in the hall behind
the Burnett Arms, where our class danced
on Thursdays over crossed swords
to bagpipes skirling Ghillie Callum,
a seventy-eight on the Dansette.
The turntable turned, and so did we,
twenty kilts fanning out like accordions
swung up like tartan wings behind us
and our black laced pumps
pranced plump pas de basque
up and down, round and round,
Whirling high with bonny smiles
we had no thought of edges
sharp as Sheffield knives
under our feet.
Later I learned
that to touch
Sword Dance 2
in flat, black shoes
and sky-blue suits
dispense clear liquids that drip, drip
from innocent plastic bags, incinerated after use.
Do not talk to me of battles.
Let me dance through the door with nothing
but numbness of neuropathy
in my toes,