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Harping On

~ A Writing Journey

Harping On

Tag Archives: ovarian cancer

The Poetry Cure

12 Saturday Aug 2017

Posted by Christine Cochrane in Blogging on, Cancer challenge, Writing News

≈ 10 Comments

Tags

Anthony Wilson, Jo Shapcott, Julia Darling, Of Mutability, Open University, Open University MA Creative Writing A802, ovarian cancer, Penny Brohn UK, Riddance, The Poetry Cure, Wayne Holloway-Smith

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,

always widdershins.

 

Whirling high with bonny smiles

we had no thought of edges

sharp as Sheffield knives

under our feet.

Later I learned

 that to touch

the blades

meant

mis

for

tune

 

Sword Dance 2

 

Nurses

 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,

hear

birdsong

tingle

in

bare

branches.

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Race for life

30 Wednesday Mar 2016

Posted by Christine Cochrane in Blogging on, Cancer challenge

≈ 7 Comments

Tags

Cancer Research UK, Helena Sanderson, Ovacome, ovarian cancer, Ovarian Cancer Awareness Month 2016, Penny Brohn UK, Race for Life, target ovarian cancer

I have awarded myself a medal!  I just happened to have three kicking around the house, from when I did the ‘Race for Life’ in aid of Cancer Research UK in 2004, 2005 and 2007 in memory of my mother and a university friend who both died of cancer.  So when I completed my sixth chemotherapy on 10th March there was a small reward ceremony to mark the end of this stage of treatment.  Of course, I never imagined when I ran those 5 Km races that the funds raised would help to save my own life.  Very appropriately, I finished my chemotherapy treatment in Ovarian Cancer Awareness Month, and I encourage anyone who is not sure of the symptoms of this disease to check out the websites at either Target Ovarian Cancer or Ovacome.

http://www.targetovariancancer.org.uk/

http://www.ovacome.org.uk/

DSC00438As I’ve discovered, treatments have come a long way since my mother was diagnosed with cancer in 2001.  My initial horror at the thought of having to undergo chemotherapy for ovarian cancer was based on fear and ignorance; the reality is that my chemotherapy drugs zapped my disease effectively and, most surprisingly, allowed me to enjoy a reasonably good quality of life during treatment.  There were other things that helped too, and I list them here in the hope of encouraging others who find themselves on the same path.

WALKING.  Nothing has helped me more than daily exercise and nature.  It didn’t matter that I wasn’t climbing the mountains I used to climb – in fact, I like the new walking routes which look very much like this:

DSC00429Which leads me on to FOOD AND DRINK. Coffee, scones, pub lunches – all have fortified me on my way, and we’ve bumped into lots of friends and had a pleasantly social time.

CHOCOLATE:  It deserves an entry of its own.  Thank you to all who took note of its therapeutic effects and supplied me!

TALKING.  I have kept on talking – to my family, my friends, my chemo nurses, the other patients.  It’s been good to be open and to give and receive support.  I feel truly blessed to have such a great social network – thank you!

LIVING AS NORMALLY AS POSSIBLE.  Yes, there are times when you are tired and will have to cancel things.  You have to listen to your body.  But, for a lot of the time, just doing normal things and being treated as normal is the best way to get on with something as big and scary as this.

AVOIDING CANCER GOOGLING.  A little goes a long way. Trust me, googling symptoms and survival rates will NOT make you feel better.  Forums are good if you read good things; they are bad if you read bad things.

ACCEPTING AND ENJOYING COMPLIMENTS.  Nod, smile and feel good when people compliment you on your new ‘hairstyle’, your slim figure and new clothes.  Some compliments are quite unexpected – recent praise of my ‘excellent veins’ from a nurse made me feel good for the rest of the day.

MAKING AN EFFORT WITH YOUR APPEARANCE.  Aim to try with your appearance and clothes even when you’re feeling a bit rough.

INDULGING IN THE OCCASIONAL REWARD CEREMONY.  Celebrate each milestone, and yes, you can mix a little Prosecco with your chemo.  I had a rule not to do alcohol in the week after treatment, but after that a little was ok.

prosecco2So now the journey continues.  It’s a bit like doing a course at the big University of Cancer.  After a bit of post-chemo ‘scanxiety’ I was told that my response had been excellent, better than expected  – 9/10!  My cancer hated that stuff and went running. But there is a risk of recurrence.  Continued work is needed to keep it at bay, so I will be having a little infusion of Avastin every 3 weeks until next January.

It’s been a harder few weeks since my last chemo – I’ve taken longer to get over the tiredness this time.  My eyebrows, which held on through five treatments, now need more artwork to make them look realistic, and even though I’m grateful for the help of Miss Wiggy I can’t wait to ditch her before the hot days of summer.  The baldness thing gets you after a while, although it’s a small price to pay.  Oh, and a bit of rethinking is required as I devise my ‘new normal’ – cutting out some of the things I used to do, concentrating on what’s important and learning to pace myself, enjoying the moment, looking at diet and lifestyle, booking myself on to a ‘Living well with cancer’ course with Penny Brohn UK.  http://www.pennybrohn.org.uk/

The recovery jargon tells you to set some meaningful goals now, so I hope to play my harp in a concert in June, go to a wedding in Germany in August and … oh yes … I have 17 Wainwright tops in the Lake District still to climb.  Onwards and upwards.

Some of you have asked if I’m writing about the cancer experience.  And at this point I’d just like to thank everyone who has bought and read ‘Shifting Sands: Tales of Transience and Transformation’ and said good things about it.  There are some lovely reviews on Amazon!  Over the winter it’s been too difficult to write something new; my own story has been too big.  I have stuff in my notebook, and I may write about cancer sometime, but now doesn’t seem the time; in a way I want to put it behind me.  I’ve been working on some poetry prompts in a small online group run by Helena Sanderson who studied with me on the OU course, and this has kept my brain in gear through the months of treatment.  Thank you, Helena!  The prompts took me in lots of directions and have given me things to work on for the future.  Only two were about the cancer experience, and I finish off with one here – it’s a ‘shape’ poem written for fun during one of my chemotherapy sessions.

shape poem_cr

From now on, expect my blog posts to less about cancer and more about life.

Thinking Smart

02 Tuesday Feb 2016

Posted by Christine Cochrane in Blogging on, Cancer challenge

≈ 8 Comments

Tags

ovarian cancer, Pauline Symonds

I have finally gone down the road of the smartphone. After years of thinking my 2006 Nokia was small, neat and just what I needed (all I do is text, isn’t it?), I finally decided a girl on chemotherapy deserves better. The tingling in my finger tips which is a side-effect of chemo made the tiny buttons hard to manage and I couldn’t read all the cheerful, quirky emoticons people were sending me. The final nudge came from a (younger) friend who looked at the Nokia and remarked that she never thought I’d have a phone like that. I explained that I used a tablet at home and didn’t want to be welded to a smartphone on the street like the rest of the population. But then I thought again, and decided it was treat time.

Three phone shops later I was well served in O2. They had seats, for example, and an assistant who didn’t look as if he was dressed like someone from the planet Zog. He didn’t talk from a pre-learned script, and explained the twenty or so different tarrifs without being in the least condescending. I came out with a sleek new phone and have now moved on from ‘Pay as you Go.’

So I took my smartphone along to my fourth chemotherapy session last Thursday and stayed in touch with the world as the smart drips went in that are giving me my life back. Back in October and November I couldn’t have contemplated going into a phone shop at all; I led a life on the sofa watching ‘Homes under the Hammer’ and surviving on small bowls of soup. Ovarian cancer bloats you, and you can’t eat much. The treatment changed all that. A week after my first chemotherapy, I went into a supermarket after a six week break and actually selected food I wanted to eat. By Christmas, the days of yogurt and retro Sixties jelly with mandarins were over, and I enjoyed a full Christmas dinner with a sneaky glass of wine. The beginnings of hair loss and attacks of tiredness were a small price to pay. By January I was going out to meet friends again, driving, extending the length of my daily walks and even, by the end of the month, going back to my Pilates class. I received compliments about my slim look and new ‘haircut’, which gave me my confidence back. And on 20th January Miss Wiggy and I climbed The Helm, a small hill near Kendal, and admired the snowy Lakeland Fells; I never thought I’d do that on chemotherapy, but that’s what smart drugs do for you.

In three months I have come from planning my funeral to planning my future. I have learned what all cancer patients learn – think smart. ‘Keep up your PMA,’ the nurse said. I wondered if this was some sort of blood count, but no – it’s Positive Mental Attitude. When I was diagnosed in October I could hardly walk into the hospital. I knew the news wasn’t going to be great, but nothing prepares you for hearing the word ‘cancer’ spoken out loud and applied to you, followed by intimations of a long haul ahead. ‘Can I get through this?’ I gabbled, my mouth dry as the Sahara Desert.   ‘Yes,’ the consultant said. I realise now he couldn’t have said anything other than this; to sow the seeds of hope was perhaps the most important part of our interchange that day. All along the way it’s been more than the drugs that have helped; the chat and laughter with the chemo nurses do a lot of healing.

My scan after three treatments showed an impressive response, so they are continuing with chemo rather than going down the surgery route originally planned; some cancer cells are in a tricky place, apparently, so they need to do more smart zapping, adding in another drug. This change of plan was a bit of a blip for me, but I was encouraged to look at the advantage of not having a major operation. When I feel down, I look at this card given to me by some dear friends.

I can think of no better advice. And there are positives. Recently a friend whose husband is being treated for a brain tumour wrote that they were so moved by the love they experienced – and through these weeks our lives have indeed been enriched by your visits, emails and messages, kind thoughts, prayers, gifts and offers of help. My husband Iain has been a star, caring for me, taking me to hospital appointments and making our kitchen the absolute ultimate in organised spick-and-span. I’ve spent more time with family and friends than ever before and have really been able to concentrate on what’s important to me.

And who knows, maybe some day there will be bigger things? My friends Hugh and Pauline Symonds have spent their retirement going on long cycle trips, most famously spending a year cycling from Sedbergh to Kazakhstan and returning in time for market day. Their lives were put on hold when Hugh was diagnosed with bladder cancer and had to spend a year going through treatment. But this January they set off to cycle from Cancun to Colorado. What an excellent example of PMA! You can read about it at http://www.crazyguyonabike.com/doc/HandPinMexicoandUSA

One step at a time. I just have to remember I still get tired and need to put myself on charge every day too. Like the smartphone.

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