POETRY BY WOMEN LIVING WITH ADVANCED CANCER
EDITED BY SEREN HAF
Staying Alive: A Book of Hope
Written by women living with advanced cancer Edited by Seren HafFour years ago I was diagnosed with secondary breast cancer at the age of 36. During lockdown I was shielding with my young child as a single parent, adjusting to living with cancer.
Younger adults living with cancer are often juggling young families, taking care of their homes and relationships whilst receiving chemotherapy and ongoing maintenance treatments for their long term illness. Often they have needed to give up their career temporarily or permanently due to the physical or psychological impacts of cancer and, more recently, required to shield as a vulnerable person during the pandemic. In addition many women face decisions about fertility and some, like myself, are put through early menopause which has its own physiological symptoms to contend with, as well as consequences on mental health
I continue to work as a Dramatherapist utilizing the power of story to heal and empower diverse clients with a range or presentations. I am co-founder and performer with The Golden Thread playback theatre company. Playback is a form of improvised, devised theatre which utilises metaphor, story, poetry and music to tell the stories of communities without a voice. My own experience was that provision of accessible, creativity based therapeutic support for people living with cancer my age was limited. A majority of services are offered during day time which is difficult when trying to juggle work, home, being a parent and weekly hospital treatments.
My experience seemed like a perfect opportunity to trial an innovative pilot project and evaluate the response! Thank you to Literature Wales for the opportunity and for their kindness.
As facilitator I offered six monthly workshops as an opportunity to explore common themes through words; a story; excerpt from a play, poem or song lyrics which expressed what it is like facing death, fearing the unknown, noticing the changes in our body, and planning the future. There were opportunities to work alone, in pairs, and to share our writing. The main focus wasn’t to write the best you could, but to express ourselves and be creative. The power of these words was founded in the supportive safe space these women created for each other. The rawness, honesty and humor is breath taking at times. I want to thank Rachel, Jill, Lorraine and Charlene for all their time, love and belief in the project as without them this book would not have been possible. Charlene died during the lifetime of the group and this book is dedicated to her.
St David’s Hospice has been a sanctuary for me. I had been in ongoing discussions with St David’s thinking about accessible ways to support young adults. I continue to receive a lot of support from St. David's and this project is in partnership with them. In particular thank you to Andrew and Corraine for listening and believing in us.
Together we have created ‘Staying Alive: A Book of Hope’, sharing our experiences through creative writing to offer strength, wisdom and tenacity and share our vulnerabilities. During chemotherapy my personal experience was that I wasn’t well enough to read, but I listened to books and music, therefore we also plan to record it as an audio book. This book will be made available for young adults at point of diagnosis or news of further treatment but also as a lesson for the wider public on how to cope with the impact of a pandemic, chronic illness and fatigue; when simultaneously facing death and staying alive.
Seren Haf June 2022
Note from the Editor
I’m Rachel Woods, a 53 year old, feisty, nature loving, horse mad, Welsh Woman, who loves my husband Steve.
Riding pillion on Steve’s Harley doesn’t come close to galloping my Welsh Section D, River, through the ancient woodland of Wentwood.
In December 2018, I was told I had Breast Cancer................. the world stopped and irreversibly changed.
Four weeks later I was told my Breast Cancer had also been found in my liver and bones. It had metastasized, advanced, was incurable, is terminal. Its called a ‘denovo’ diagnosis, I forfeited Primary and galloped straight into Secondary Cancer!
My first year following diagnosis was so far the most shocking of my life, if you are reeling with a diagnosis, just hang on, one breath at a time and access the support services that are there. Such as, Breast Cancer Nurse, Counsellors, GP, Financial and Benefit Advisers, Hospice Support Workers, Chaplin, grab it all, see what and who can support you, find out what works for you. Over time you will build a strong team that provide a foundation to manage your Cancer.
I receive treatment every three weeks and I am fortunate that my cancer was stable at my last scan in February 2022. I hope that our poetry and writing provide you with an insight into living with Advanced Cancer. Offering support, comfort, courage and hope to not only those of us living with Cancer, but to their partners, older children, relatives and friends.
May love, laughter and hope surround you x
‘My name is Jill and I am a 50 year old married Mum of one. I was diagnosed with primary breast cancer in 2006 when my daughter was 14 months old. I had multiple surgeries, chemotherapy, immunotherapy and hormone therapy.
I was diagnosed with secondary cancer in 2019 by chance following routine blood tests. I am having continuous chemotherapy, hormone and bone therapy and have retired from work as a physiotherapist due to ill health.
I try to to live in the present and embrace every day to make memories and have a good time!
I am lucky to have amazing husband, daughter, friends and family that support me in many ways. I’m also very lucky to have my NHS teams always giving me excellent support, care and kindness. I have always loved writing and poetry so being able to contribute to this book fulfils a dream for me! The creative writing group allowed me to voice my feelings in a safe environment, enabling expression of emotions, thoughts, and fears. And I made some lovely new friends!’
Hello, I’m Lorraine, a 38 year old, wife and mum of two.
My Cancer Journey started in 2011, when my son was just 7 months old. I had pain and weight loss but cancer was never thought of as I was too young! At this point I was 28. My cancer was diagnosed following an emergency ambulance admission and subsequently emergency surgery. The tumour had blocked my bowel causing it to perforate. I was gravely unwell, I fought for my life and I won.
I was cancer free for approximately 6 years. Due to my life saving surgery I have adhesions in my bowel, which can cause blockages.
The CT scan was requested to explore this but found multiple lung nodules which following a biopsy was diagnosed as incurable metastatic bowel cancer (dam!).
Prior to the cancer, I studied speech therapy at university and was working in this profession. I mainly worked with adults who had experienced speech, language, communication and swallowing difficulties due to an acquired neurological disorder, such as Stroke, MS, Parkinson ’ s.
I grew up with three sisters, we continue to have a close relationship and none of them have developed cancer (touch wood quick! And thank goodness). They all work and have their own families.
My dad is retired and is very supportive, helping me with the children and taking me to chemo and appointments if needed.
Sadly I lost my mum 6 years ago due to complications caused by MS. I miss her dearly.
I’ve been happily married (although my husband may disagree!!) since 2009. My husband is an amazing man, he’s very supportive and I feel so very lucky to have him in my life.
I am a mum to a 10 year old boy and a 7 year old girl, plus I must not forget my fur baby Lumi he is 4 years old and is a Cane Corso.
Currently I’m on a treatment break, so basically when my lung tumours are stable, I receive 3 monthly scans. If progression is found then I go back on chemo for approx. 6 months.
I hope you enjoy my contribution. I’ve never written creatively but have embraced this opportunity and have benefitted greatly.
Some take home messages from me is to be kind to yourself, rest when you need to, eat when you feel able and hold your loved ones that little bit longer, enjoy spending time together be in the moment, house work and chores can wait.
Much Love XX
Charlene Evans, October 2021
“I’m not scared of dying, I’m scared of not living”
September In between labels
Writing Prompts: The Summer Day
Winter’s Cloak
Both Sides Now
Mary Oliver
Joyce Rupp
Joni Mitchell
De novo Metastatic (Rachel)
So, I joined the train too late and bypassed the ticket booth, the platform, ticket collection and sped full speed to my 1st class carriage, destination final, destruction being my unfortunate fate,
The end is my end, the vicious medicine contains it, prolongs it, it will not stop it, its terminal, its incurable, its advanced, racing through my veins, unstoppable, yet treatable,
My Cancer Train
Doesn’t everything die at last and too soon?
Tell me what it is you plan to do with your one wild and precious life?
The Reaper, grimly, with his scythe has stalked me, casting shadows on my shoulder, is this since I’ve learnt the cancer resides in my body or has he always been there, whilst I’ve remained blissfully unaware that, “doesn’t everything die at last and too soon?”
The urge to ensure and experience the very best of me, I throw myself into each moment, immerse myself into plans and schemes, abandon myself to the now, rather than dwell in the uncertainty of my incurable cancer situation,
The urgency of my panicking mind, the what is, the what if’s, the what might’s, what has, what did, what didn’t, what could, what may, what was, I leave my mind rattling on, I’m exhausted with it,
As Autumn let’s go and releases, Her song begins, as the Oak sheds her golden leaves, that languidly spiral to the woodland floor, I behold the beauty in this moment’s dawn and casually tree like let everything else slip away Living, whilst Leaving, my perfect, wild and precious life, my beautiful self
What am I? (Jill)
A patient?
A Burden?
A person with cancer?
But I am also a -
Mother
Wife
Friend
Sister Daughter
Colleague
Godmother
Employee
Supporter.
Cancer labels you but does not have to define you ….. life
(Lorraine)
‘One wild and precious life, I don’t really know life at all, but now friends are acting strange, they shake their head they say I’ve changed, well something’s lost but somethings gained in living every day’
My life how its changed
Difficult
Peers getting married
Having babies
Friends in managerial roles
Home benefits
More time
Less rushing around
Blackberries and sloes (Jill)
I am picking the blackberries and sloes, planning for winter, Will I be doing this next year? They grow and ripen, I wait in anticipation for their arrival, All of a sudden they are here - too many too soon!
I need to pick quickly, get the best before it’s too late. Have I got time? Just in time for Winter- have I done enough? Until next year - will it be me picking? Collecting? Making for my family? Will it be someone else? Or will they perish and waste……
October Changes & Transformation
Writing Prompts:
The Journey
The Shaft
Autumn
Mary Oliver
Helen Dunmore
Samuel Menashe
The Inanna Myth version by Jean Shinoda
Bolen
The goldfinch sang an old story this spring. The story was to pull dandelion out, to get rid of my brightness, stop my metamorphosis into the lightness of seeds, a floating soul.
Yet, softly I land and infiltrate Earth. Grounded in mineral but dizzy from flight.
A new story is sung, about me, about all the dandelionesses that will flower, accepting the unacceptable whilst the goldfinch sings.
(Seren)
Uprising
The journey (Jill)
The worst news I have ever had, A lifelong membership for a special club, Life like an egg timer, slipping away, How do I travel this journey?
Alone? In fear? With strength? I feel alone but I have companions - like minded travelers, They are on this difficult journey too, We cling onto life, celebrate each little victory, commiserate each defeat, And I am not alone, We hope together.
The Mattress (Rachel)
My pain, My weakness, the sunlight on my bed covers me, soothes me, blanket like, I’m bathing in its perfect warmth
On other days the rain pitter pattering on the pane, provides a melody, a tune to the throbbing dance, my liver and right breast indulge in.
I’m held here by my mattress, super supportive, just like my Mum, who purchased it, as her heart shattered and broke into a trillion pieces as she heard my dismal, life ending diagnosis.
She wraps me in her love, I lie on her grief, her gift, each night, she holds me in memory foam, as we try and glue our shattered hearts back together, whilst I try to sleep.
My bed, My world, My life, Has shrunk to a cancer riddled microcosm,
I am still free, As the sunlight hits my face, head resting on my pillow, body soothed, loved by my Mummy Mattress
November Nourishment: celebrating the small wins!
Writing Prompts:
Extract from The Witches
All Bread
Extract from the Boy, the Mole
the Fox and the Horse
My life’s stem was cut
Roald Dahl
Margaret Atwood
Charlie Mackesy
Helen Dunmore
CAPRI SUN (Rachel)
PART ONE
Juicy, ripe, oranges
Flesh exposed, sunshine slides down my throat, Invigorating, sweetness in its pouch.
PART TWO
She’s parched, desert dry mouth,
The juicy orange ripe foil pouch, beckons her, entices her, Thirst,
She struggles with the foil pouch, attempting to pierce me with a paper straw, replacer of plastic that left sea turtles upended on our shores,
Lifted mouthward, lips pursed on straw, I touch her upper and lower jaw, I tickle her tonsils, she wants more, the dryness returns, her paper straw now soggy can quench her thirst no more.
PART THREE
My thirst is quenched, at the glug, The dryness and parched feeling are relieved by the glug, Falling, like oranges from branches of their tree,
Liquid rushes, gurgles towards my stomach,
Its then I realise my thirst resides by my tonsils, unlike hunger that lodges below my ribs,
Liquid hits my tonsils, becoming my inner waterfall, cascading into my stomach basin, where the orangey treat is finally absorbed.
Food and Diet
(Lorraine)
Eating for Health, growing up everything inn moderation?? Is that best? So many diets but what is best for me? After diagnosis should you be referred to a dietician as you only ever see a dietician when there is a problem, for me it’s been, too thin, pancreatitis, cooking is hard due to fatigue and when able to cook pain creeps in and I cant eat.
What advice would I give to a first time chemo patient in a waiting room
Nourishment on chemo can be hard. Eat when you can. Request a dietician referral for advice and to talk about what diet is best, lots of research into diet and cancer, no sugar, ketogenic diet, vegetarian, vegan etc get advice before following a diet as in the long term you may end up causing more problems.
Self-reflections
Before cancer eating was not a problem just ate convenience as life was busy with children and work etc. did this convenience cause my cancer?
Water personal reflection
Boring, wet, flavourless, I wish it were wine, a nice chilled white zinfandel mmmm. in my favourite wine glass which I bought whist at uni. But I have water, its good for you!!! But boring!!!
What does water see on its journey through me
The water sees a haggard and tired 38 year old me, it sees my dry mouth, the water lubricates my oral cavity, it rushes over my tongue, down my esophagus, through my organs it enters the bowel and its drawn out to be used around my body.
KALE will cure your cancer..
Have you tried kale? Giving up the ale ? Why don’t you give up dairy? I bet its fun not being so hairy, Short hair suits you? Has someone analysed your poo?
What do you mean you can’t be cured? I hope you’re insured?
Exercise more, rest more, eat less, eat more (Kale), You’re lucky to retire young, ‘time’ on your hands for sure, Why don’t you google a cure!
Sugar
Sugar, sugar everywhere,
It reportedly makes cancer grow, much to my despair.
Cut out sugar to stop cancer growth,
It’s the sweet treats that I miss the most.
Let’s follow the advice just to see,
If the cancer responds,
So I can live longer with thee.
(Jill)
(Lorraine)
The Woman and The Horse (Rachel)
‘I worry’ I said, ‘about our future,’ I said,
‘Why worry’ the horse replied, ’you don’t know when or how our lives unfold,’
‘You are my very favourite way to spend my day, whether it’s mixing your feed, brushing your coat, picking mud from your hooves, throwing my arms around your neck and breathing in your smell, as I push my nose into your fur coat, shoveling your muck or galloping wildly through the woods.’
‘I love all these things as I do them with you.’
‘Yesterday we stood by your gate looking at the trees in all their autumnal glory, the golden orange hues, our breathing in tune, then you turned, nuzzled my hair, then licked my face, from my jaw right up my cheek, you looked pleased with your unexpected lick. I laughed, loudly, freely, our bodies rooted to the earth.
‘I worry’ I said, ‘about our future’ I said,
‘Do you know I’m dying,’ I said,
‘You look very much alive to me,’ my wonderful, astute horse said.
Letter to my dog (Jill)
Dear Dog,
Could you give me some tips onto how to live a good but short life?
I always think that dogs are mostly happy and enjoy life and I feel that is sometimes missing for me these days. Looking forward to your reply! Jill x
Dear Jill,
That’s an interesting question but easy to answer. Anyone who is limited in time should be more ‘dog’ - don’t forget our life is on fast forward and every year is a human 7 years.
Top tips!
Live in the moment- every moment is unique - good and bad. If we think too much about the past or future we spoil the present.
Enjoy treats ( I like biscuits but I know you humans like chocolate and wine - out of bounds for us dogs). A treat is something you like so get as many as you canbig and small.
Sleep and relax whenever you can - it recharges the batteries and means that when I’m with my human family and dog friends I can really enjoy myself. There’s nothing wrong with resting the paws - listen to your body.
Enjoy yourself- rain, sun , snow, mud, walks, playing, sleeping. I always take pleasure in little things as I don’t have one of those shiny noisy things you stare at.
Last of all - us dogs don’t live as long and we are really missed when we go - that’s why we don’t waste a minute and love unconditionally ( apart from cats/ squirrels/ delivery drivers)
Love Dog xx
December
Peace in Winter
Writing Prompts: Magniloquent cartilage
Thaw
Silver Birch
Mermaids
Lemn Sissay
Edward Thomas
Robert Macfarlane
Holly McNish
‘WINTER’ acrostic poem (Rachel)
‘W’inghy, worrisome, worn out, watching for more signs of my demise,
‘I’ celebrate my Cancerversary of 3 years, time marches on, the tick, tock, ticking of my cancer clock,
‘N’obody knows when I will die, when my cancer will decide to come alive,
‘T’he toxic medicine they prescribe keeps me here, my saviour that hands me more time,
‘E’xactly how long my ego wants to know,
‘R’est, relax, let this fretting go,
Winter (Jill)
Although I am in the winter of my life
The season of rot and death, Cold , wet and dark, Depression and hibernation, I still see the lifeGreen buds and shoots, White frost and coal fires, Snow days, Winter, like my life, it isn’t all bad…. but sometimes it feels like it. Roll on spring!
‘
Let me burrow in my bed
Let me rest my weary head
Let my mind cease its spin
Let my sleeping journey begin
(Rachel)
Hold me in your warmth, my sweet duvet delight, Lay there comfortable through this night
Stop myself from taking action
Let me burrow in my bed
Let me rest my weary head
Do not respond to clock or phone
Silence my radio
Let peace fill my anxious head
Pray, Let me burrow in my bed
WINTER’ holds me safe, hibernating in my warm, safe, comfortable bed.
Collateral Cancer
(Seren)
I don’t want to be mainstream, an icy stream of worlds Frozen and not diverse.
I want to inhabit a cloak of silence this winter. Silent night of moonfull dark but, I see lunacy and my voice is not frozen.
I will not think the way you force us to, I will break the ice and every shattered piece will shout I AM DIFFERENT.
Before melting, puddles of free speech on dark ground; unseen, incompatible, women.
What is it like being a bouquet of dried flowers?
(Seren)
I am tied with a loose string, I can move and my petals scatter but your love bounds me tight.
I am a bouquet of lilac and cream, a frock which I wear effortlessly, robust, still in time.
Dried out fertility is preserved immortal, I am a childhood summer in the dead of winter
Writing Prompts:
January Saying No
Beach Scene
I Don’t Want To Be Demure
or Respectable
Hilaire-Germain-Edgar Degas
Mary Oliver
Psyche’s Tasks version by Jean Shinoda Bolen
Extract from:
The Deep Blue Sea
Terrence Rattigan
Bud, Thorn and Blossom (Seren)
I’m in deep sleep sleep, sleep, sleep now,
I cannot get up up, up. Up. Now.
I am enough enough, enough. Enough now
Life is busy, children calling for me which keeps me busy, no calls for dad to make him busy as mum does things the right way.
Busy from morning to night, busy making the children happy, busy cleaning, busy doing jobs, busy helping people.
Keeping busy makes me feel normal, but too busy makes me realise I need to rest more, even when resting my brain is busy.
What will happen when I’m gone? Will the business stop? or will someone fill my busy gap? Will death be busy? We won’t know what death is like and for those who have gone they can’t tell us how busy death is.
Busy is good for now as it keeps me living.
Busy (Lorraine)
Pace of Life (Rachel)
Mary Oliver writes about nature, the rhythms of our world.
‘How the river can’t wait to meet the ocean’ she may be bringing to our attention the pace we lead in our modern lives.
OAK TREE
The rush, rush, gush of the stream, racing along to become river, rolling and rallying to be sea, thunderous surf of the oceans!
The cyclical non stop rush, gush, gurgle, gargle, chitter, chatter of our lives…..does any of it really matter?
What matters to me these days?? These days of new words, new terms, medical diagnoses, blue tunics, green tunics, purple tunics, white tunics….I have no idea what this medical colour scheme means
What matters to me these days?? Of Hospital appointments, treatment, scans, needles and more needles, contrast dye, my inadequate failing veins,
What matters to me these days?? Of lying in my bed, of sympathetic head tilts, of death thoughts whirring about my mind, who walks their dog and thinks of their funeral plans, of the day when they are dead,
Sssssshhhhhhh, it’s a whisper on the old oak tree, told to leaves she shed, let go of on the breeze, as I knelt on my bended knees, silently screaming whilst praying to her bark, my ancient old Oak tree.
I sometimes let my mind wander to how and who I would be in twenty years, if I didn’t have this disease.
I sometimes let my mind wander to where I am free… I find myself in the present moment its where I need to be.
I
I
Sometimes
have
do
What have I said ‘no’ to?
(Lorraine)
I wish I had said no to a trip to the beach, this was during the time I was suffering from a pancreas flare up!! All I did was sit on the rocks but I did get enjoyment out of seeing my children and dog paddling in the sea. I have started saying ‘no’ based on how I’m feeling, for example my husband organised a dog walk with a friend I wanted to go to see how the dogs play, leading back to me not wanting to miss a thing as potentially I may miss out on a lot! I wasn’t feeling great so eventually said no. My husband revealed that he needed the male company and time out and I got lots of photos of the dogs, so we can make adjustments in order to not miss out esp. with todays technology of face time etc.
Advice from an expert - who is the expert?
(Jill)
I’m always tired - then rest.
I’m still always tired - then plan your day.
Too much to do, too little time- learn to say no. the advice I am giving you is good advice, its what is advised by experts.
Who is the expert - I think that may be me - my life, my body, walk in my shoes for a while….
Suicide (Lorraine)
‘Most suicides die to escape, You’re dying because you feel unworthy to live, isn’t that true.’
Suicide, hopelessness, unable to go on! No hope in the word! Alone, problems.
Death by suicide for why? People have taken their lives, which I cannot understand. I hate being given this life sentence, I would not choose this life for me. I would choose life and to be able to live long. Suicidal people must feel so low.
Attitude to disease I believe is important. A positive outlook is needed not a negative outlook. Positivity will help me live longer, I hope! Negativity may mean you live shorter with disease but how can this theory be explored? Does a positive attitude effect life expectancy?
Writing Prompts:
February The End
Hold Out Your Arms
Helen Dunmore
Let’s Go Crazy Prince
The End (Rachel)
From the moment of diagnosis, I dance with my disease, the ends begin, over years, mine is not a sprint to the deathly finish line, I’m fortunate with that, mine is a leisurely saunter on a warm summer’s day, a long-distance demise, a marathon of sort’s, my end of life.
I’m glad for this, my protracted last bit of my life, my many varied goodbyes, of job, of social life, of parts of me, some friendships I watch them slip away, boats unmoored on stormy seas, I mourn their loss, them leaving me, I learn to sing a different song, I rediscover a new me, There’s a freedom to terminal disease, it holds a secret, sweet key!
Sadness surrounds a finale of any sorts, endings give way to nostalgic thoughts, the last page of a fantastic book, the last day of a holiday, the last five minutes of a brilliant film, the last climatic lines of a play, And then the bigger thoughts, the last canter on my horse, the last walk with my dog, as my cancer strips me bare, endings are rarely fair.
I don’t want it to be my end, I am jealous of those I leave, still living in my absence,
How obscene, how bloody rude to go on without me! I am being glib, so, at my end let me have hugged all those good friends before I need to rest, let me tell them how they decorated my life, showered me in love, laughed until we cried, memories to be carried for years to come, call my name and I will come, and if this is the end, let my mother’s hand be in mine, let my brother and sister, with Andrew be nearby, let me hear river, smell freshly mown grass, let birdsong fill my ears, Macey’s weight upon my leg, as I lay wearily against my husband’s chest, let this be my very last breath.
The End
How I want to be remembered: Dedicated, proud, supportive, kind, caring and loving.
(Lorraine)
A dedicated mum, A proud mum, A supportive mum A kind mum, A caring mum, A mum who loved and was loved by her children.
A dedicated wife, A proud wife, A supportive wife, A kind wife, A caring wife, A wife who loved and was loved by her husband, A partner in crime, figuring out parenting together.
A dedicated daughter, A proud daughter, A supportive daughter, A kind daughter, A caring daughter, A daughter who loved and was loved by her parents. A dedicated sister, A proud sister, A supportive sister, A kind sister
A caring sister
A sister who loved and was loved by her sisters.
A dedicated friend, A proud friend, A supportive friend, A Kind friend, A caring friend, A helpful friend, A friend who loved and was loved by her friends.
I will be remembered as many things but would like to be remembered as me.
Underneath (Jill)
Under my skin, In my body, The rotten core, It lies underneath, not seen or heard but suppressed until it finds the fuel to grow, I don’t want this, its not in my control, The rotten core.
When I am gone (Jill)
When I am gone, I won’t be gone, I will be in your heart, In your memories, Look for me crashing through the waves, Up a mountain, breathe in the air, In a coffee shop, eating cake By the campfire, relaxing by the flames. I am in every grain of sand, every shining star, every smiling sunflower, Laughing with you, crying with you, sharing those moments. When I am gone, I’m not really gone….
Parenting is hard…. (Lorraine)
Living with cancer is hard….
The two combined!!!!!
Well let’s see
I am a mum to a boy of 10 and a girl of 7.
My cancer journey started when my son was approximately 7 months old, a vulnerable, needy, bundle of giggles and babbles.
Luckily I’m married to a very dedicated man.
I was rushed into hospital by ambulance, waving good bye to my bundle of joy, who had woken in all my commotion.
7 weeks later I returned home, back where I belong, as a mum to my son.
I had to recover from the ordeal I’d been through, I was weak, sore and fragile and needed lots of support too.
I remained in remission for 6 years.
I was told no more children, as chemo had damaged my ovary, but then a miracle, we had conceived another child, a daughter for me.
I love my family, it’s very clear to see.
When my daughter was three and a half, my body decided to add more fun to my life.
Title given, incurable metastatic bowel cancer, primary absent, mets in my lungs, the tumours replicated the splats of a paintball gun, as if I had been in a battle but that could not be won.
From that day to this, I’ve been juggling cancer and life.
Parenting is hard!
Balanced diet with 5 a day, trying to feed a fussy eater, what can I say!
Hygiene, showering, bathing, cleaning teeth properly, clean clothes, brushing knotty long hair.
School attendance, pickups, drop offs, homework despair, there’s reading for both and spellings for him. Parent consults encourage and also make me aware, of areas of struggle and more work to juggle.
Behaviour, we praise the good and discourage the bad, mood swings are challenged to ensure they are not sad. The fighting and swearing many times I despair, I wish they would get on, to save me pulling out my hair.
Birthdays are fun for children indeed, the parties, cake making and catering to feed, the numerous friends they had to invite, money can be spent on presents, well into the night.
Christmas is special, meeting Santa is fun, see him on a train, in a cave the memories are important ones.
Mums taxis is used to ferry them around, to all the sports activities, I complete without a frown.
The chores we have, to many to discuss, parenting is hard but also a must. We forget the small things, that make it worthwhile, from player of the match, to a simple sweet smile.
Now cancer is hard, this part is true, the emotional distress, for me and you. The appointments for discussions, making future treatment plans, for bloods, for scans to ensure the correct plan. The medication, for side effects, to stop the sickness, there are helplines to call, to stop the fuss.
Fatigue is a bitch and hinders my day, but I rest a while, as the kids are away, at school all day, this helps me a lot. Chemo and little people, I found that’s a lot, of hard work and of stress, but when they were young, I must confess, the amazing support from hubby, from dad, from sisters but not mum. The pain, poor appetite and the weight loss, all add to my stress, while I try and parent like a boss.
When cancer meets parenting, boom overload
School drop offs and collections, while feeling grossly unwell, the phone a friend option, for days when you can’t, get in the car to complete, such a simple task. I retreat to my bed and bury my head, hoping to feel better, when I rise, so that I can continue to parent, my prized possessions, my children, my life.
I’ve said before, my husband is great, he’s hard working, very supportive, a loving father of two, but some days, when stress is high, he struggles to leave me too.
The children are growing and each time I notice, chemo and child care becomes less a focus. This cancer will live with us, a secret burden on all, I have many emotions, of which I recall.
The Guilt, is real, I feel sorry for all, my daughter wants me to play barbies but this time I’m falling, fast asleep so my body can keep healing, I’m trying to keep normality real, but some days, I feel a real failure and I worry my children suffer alone, but we have love all around us and inside of our home.
I worry a lot, so much some days, I feel I’m losing the plot with this path I’ve been paved. What will life be like for my children when I’m gone, who will tuck them in tight and sing then their song. Who will cwtch them in close, when they are sad or feel lost.
The concerns go on but for now let’s just try, and focus on living a long simple life.
I was admitted to hospital with neutropenic sepsis, on day six of my stay our last writing group meeting was held. Our group coincided with the last IV of antibiotics before I could go home.
LET’S GO CRAZY
(Rachel)
Crazy this life of mine, Crazy how my emotions climb, Crazy my love for you, Crazy how I have missed you, I’m coming home tonight, so let’s go crazy and celebrate, Let’s dance, close, side by side, To the song we chose for our wedding night, Let’s go crazy, I don’t need a glass of wine, Let’s go crazy, your body close to mine, Let’s go crazy, I’m home today, I’m alive and well, so let’s celebrate,
Let’s go crazy, I’m still here, Let’s go crazy, hold me close, my dear, Place your hand in mine and never let me go, Let’s go crazy, the love of my life, Let’s go crazy, man and wife, Marrying you was the best day of my life!
Writing Prompts
The Summers Day by Mary Oliver from New and Selected Poems, 1992 Beacon Press, Boston, MA
Winter’s Cloak by Joyce Rupp, in Joyce Rupp & Macrina Wiederkehr, The Circle of Life: The Heart’s Journey Through the Seasons (Sorin Books, 2005), 249-50
Both Sides Now by Joni Mitchell © June 19, 1967; Gandalf Publishing Co. (as "From Both Sides Now")
The Journey by Mary Oliver in No Voyage and Other Poems (Houghton Mifflin 1965)
The Shaft by Helen Dunmore https://poemsontheunderground.org/the-shaft. Reprinted by permission of Bloodaxe from Counting Backwards: Poems 1975-2017 (2019)
Autumn Samuel Menashe from Samuel Menashe: New and Selected Poems (The Library of America, 2005)
The Inanna Myth and Psyche’s Tasks by Jean Shinoda Bolen in Close to the Bone: Life Threatening Illness as a Soul Journey 10thAnniversary Revised Edition Conari Press 2007
The Witches by Roald Dahl Penguin 2016 edition (pgs 188-190)
Magniloquent Cartilage: A Constitution for the UK by Lemn Sissay MBE. Commissioned by Art 50 to write a new constitution for the UK. 'Magniloquent Cartilage' is a ‘new charter' for the UK when we leave Europe outlining 12 steps to living harmoniously. It was interpreted through a light art installation made by Mary Branson at Salisbury Cathedral named ‘Ladders of Light’.
All Bread by Margaret Atwood, from Two Headed Poems. Copyright 1978 Margaret Atwood.
The Boy, The Mole, The Fox and The Horse by Charlie Mackesy, Ebury Publishing 2019
My life’s stem was cut and Hold Out Your Arms by Helen Dunmore in Inside the Wave, Bloodaxe Books, June 2017 edition
Thaw by Edward Thomas in The Collected Poems of Edward Thomas, Faber and Faber 2004
Silver Birch by Robert Macfarlane in Lost Spells
Mermaids by Holly McNish in Nobody Told Me: Poetry and Parenthood, Blackfriars 2017
I Don’t Want To Be Demure or Respectable by Mary Oliver in Blue Horses: Poems, Penguin 2014
The Deep Blue Sea , A Play by Terrence Rattigan , Samuel French 1952 was streamed as part of National Theatre at Home from Thursday 9 July 7pm on the National Theatre’s YouTube channel, then on demand for one week until Thursday 16 July 7pm starring Helen McCrory
Let’s Go Crazy written by Prince for Prince and The Revolution in the album Purple Rain 1984
“It was an opportunity to talk openly about what we are going through”
“There is no hedging in conversation, we tackled our situation head on”
“Prior to this group I had very little me time. I never wrote anything unless it was a shopping / to do list!”
“My creative writing has improved and my confidence to write has blossomed so much so that I still pick up a pen and write when the mood takes me.”
“Its hard with my limited energy to be involved in any evening activities, here I could zoom in my pyjamas whilst lying on my bed and everyone understood. I even attended a session from my hospital bed.”
It was an opportunity to talk openly about what we are going through.
There is no hedging in conversation, we tackled our situation head on.
Prior to this group I had very little me time. I never wrote anything unless it was a shopping / to do list!
My creative writing has improved and my confidence to write has blossomed so much so that I still pick up a pen and write when the mood takes me.
It’s hard with my limited energy to be involved in any evening activities, here I could zoom in my pyjamas whilst lying on my bed and everyone understood. I even attended a session from my hospital bed.
