All in One Day: three stories from medics and carers working at Christmas

For many of us work is winding down and we’re getting ready for the fun and festivities of Christmas. Even if we don’t celebrate, some time off comes as a welcome break at the end of another busy year. Food, holidays, gifts and sales have become synonymous with the season of joy and goodwill but contrary to the adverts on TV, over-eating, over-spending and over indulging aren’t what Christmas is really all about.

This post shares three short stories from medics and carers who’ll be having a very different kind of Christmas. After reading this I hope like me you’ll spare a thought for everyone who epitomises the true meaning of Christmas, “giving up one’s very self to think only of others…”

The Nurse

“I know I can’t make them love their baby. I know I can’t ignore a baby at risk. And even though I know it’s absolutely the right thing – because it isn’t safe for a child to be there – I still feel bad for all of them. Removing a child is a last resort and a whole panel is involved. But the parent(s) blame me anyway, and when that happens it makes me feel like I failed.”

After working with a young mother, her on/off partner and their very young son, The Nurse assessed the home environment was unlikely to improve. Domestic abuse and extensive drug use surrounded the teen mum. By default, it surrounded her young son too. On a grey, wet December day The Nurse took part in care proceedings – something she finds stressful but all too frequent in her type of role – knowing her evidence might lead to removal of the child, possibly for fostering or adoption. Two previous children had already been placed in care. “When the meeting finished, she (the mother) was emotionless about her son. It was if he didn’t exist. Afterwards she mouthed “you did this” and the look she gave me, it was withering. I know I did the right thing, but I just keep asking myself what more could I have done?”

The Carers

“We’ve worked every Christmas and New Year for over ten years. It’s difficult to get cover at Christmas, but peoples’ care can’t suddenly stop. We work because our clients still need washing, dressing and breakfast. They need a friendly face who’ll arrive again at lunchtime, make sure they’re clean and make sure they take their medicine alongside lunch. Then we’re back again in the evening, wash and change the client, and get them safely tucked into bed. Put the dirty laundry into wash so it’s ready for the morning, make sure the client is settled, turn off the lights and then head home. If we’re lucky we’ll be back by 11pm.”

The Carers work from today until New Year’s Day without a break. They’re out on the road at 6.30am every morning, get a couple of short breaks if they’re lucky and their shift ends around 10.30pm. They visit multiple clients with a range of care needs. “This job doesn’t suit everyone. Sometimes clients can be difficult because of their illness, sometimes they’re very confused or upset. There’s a lot of poo to clean up as well, but you just get on with that! Very often we’re the only people some of our clients will see this side of the New Year. So it might mean finishing after midnight, but we give some extra time. No one wants to feel alone over Christmas, do they.”

The Medic

“What an afternoon: one person has chest sepsis, another person had a huge upper GI bleed and nearly arrested, another has critical stenosis of their cartoid arteries. None of them will be well enough to go home for Christmas. I felt completely frazzled at the end of my shift today, and this afternoon really impacted my mood. Working in a major hospital is rewarding but it’s also challenging and this all happened on the ward, not in A&E. We are short staffed, which doesn’t help.”

The Medic’s ideal Christmas this year would be a peaceful one with as little stress as possible, a chance to unwind, sit down for more than ten minutes to eat lunch, and catch up on sleep. “Yesterday I had to tell a family their loved one was dying and probably wouldn’t make it to Christmas. Everyone thinks it’s a happy time of the year, but it isn’t happy for everyone. Inevitably some of that stays with you.”

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Full Circle

This blog began in 2012. At the time my son J was a few months into his first year of a Biomedical Sciences degree. Of all the things I despise about cancer, being diagnosed at that time is in the top five. No-one wants to learn their Mom has cancer when they’ve just committed to three years higher education and live in an unfamiliar environment far from home.  For much of the time J was at University, I was making regular trips to the Oncology centre. It was a surreal and difficult period for us all.

J knew from a young age that he wanted to go into medicine. Last week his wish came true when he took up his post as Physician Associate in Neurology, caring for people who’ve had strokes or other serious brain injuries.

In 2012, surviving cancer meant I could stay around to provide J with the love, support and encouragement we all need when we set out on our lives. Every day I hoped I’d still be here to see him take up the medical career he worked so hard for. I’m hugely grateful that in December 2018, my wish came true too. It is, quite simply, the best Christmas present I could ever imagine.

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MSc Physician Associate Studies with Distinction, 29th November 2018

Close the door, keep walking

Close the door, keep walking

Wherever you are, whatever your situation, I wish all readers much happiness, love and wellness for everyday of 2018, these are life’s greatest riches and I hope you find them in abundance.

2017 was a difficult year for us. Although there were some high points, there were also terrors. The kind that bring sleepless nights and frantic days. We learn from all experiences, the good and the bad, but last night we pushed the door firmly closed on 2017.

The wonders and possibilities of 2018 are most welcome because the last 365 days have been a long, hard slog. Though the desire to wipe away the past is strong there are tributes to pay and deep gratitude to note before moving on:

  • For the medics who helped J survive meningitis and J’s will to recover from a very traumatic experience
  • For my father who continues to help others and spares little thought for himself
  • For our journey to the furthest reaches of Norway and our once in a lifetime experience of the Mirrie Dancers
  • For friends and family across the globe, and loved ones lost but never forgotten
  • For food, clean water, warmth and shelter – all so easily taken for granted yet still beyond reach for far too many
  • For life, however long it lasts, because every day is a day further from cancer. This year will be my sixth post-diagnosis.

This new year has barely started but it comes complete with some significant milestones for us, big events that will shape the future in ways we can’t fully imagine as yet. It also comes with lots of blank canvas, new days ready to receive whatever memories we chose to paint there. We are a family of three, and all three of us have brushed with death at an age that is far from being “old.” So as we continue this journey we remain optimistic about the possibilities that lie ahead. There is much to explore and too little time to grumble along the way. We know now that wherever the path takes us, we’ll make the most of it and keep walking on. It is, in every sense, a happy new year.

A regrettable winter

My mother died twenty years ago this December 2nd. I remember it clearly for several reasons. Her death was unexpected, she’d almost finished chemo following another run-in with cancer. Cruelly, she was in hospital receiving treatment for chemo-related complications and everyone thought she’d be home for Christmas – she wasn’t ready to give up and nor were we but none of us got what we’d hoped for. Fortunately or unfortunately depending on your viewpoint I was there when it happened, and now, 20 years on, the violence of her death still plays vividly in my memory with full technicolor and time stretching slow motion despite my best attempts to erase that fateful winter day.

In the early years following her death seasons of the year blended one to another, life continued but the gap she left behind was all consuming. Christmas, which had always  been one of my favourite times of year, became desolate and hurtful. My memories consisted only of my Mother’s untimely death and the actions that had consumed me in the period leading up to her funeral. I spent many Christmases in the wilderness, caught between bereavement and bewilderment. It is not a time I would choose to relive.

Roll forward twenty years and I’m still here, and still filled with sadness about my Mother’s death. It’s no longer acutely painful because as humans I suppose we’d cease to function if anguish and torment stayed so raw for so long. Today the feeling resembles a blanket of numbness, the kind that comes with Novocain. You know there’s a lot of pain beneath but on the surface it’s no longer perceivable. Somehow  you know it’s a trick, because the numbness is transitory and the pain might resurface when the Novocain wears off. So you hope it never wears off.

For the longest time just thinking about my Mother conjured images of her death and nothing else. It’s taken two decades for other, happier memories to creep back in.  My Mother was never a moaner. Throughout her illness she never asked “why me.”  During her sickest, most challenging days she always had more concern for others than she did for herself.  Generosity of spirit was one of her greatest characteristics and something I learned a great deal from.

Twenty years on my relationship with my Mother’s death has shifted from one of desolate unhappiness at her early departure to one of gratitude and profound joy for the time we spent together. Of course I’d have wanted her to have 80-something years on Earth instead of the 40-something she achieved. I’d have wanted her to enjoy many more happy years with my Father and live to see her grandson grow into a young man with a passion for helping others and a talent for medicine. Winter 1996 snatched all of those things and more away from us. But times change and winter is no longer such a regrettable time of year. I remember happier times, times spent with my Mother making Dundee cake and Brandy snaps,  decorating the Christmas tree and wrapping presents. Her death was cruel and untimely but her loveliness and warmth live on, timeless and unchanging.

Summer 1993, Mum, J & me

Summer 1993, Mum, J & me

 

 

 

Tabula rasa

Several years ago M and I agreed that assuming you reach it, a time comes when having more stuff – trinkets, baubles and chattels – is unnecessary. That time happened to coincide with my cancer diagnosis. The maelstrom that followed only served to reinforce our thinking and of all the stuff we had, time and health were by far the most precious. Unfortunately they both seemed to exist in a separate realm, one that was well beyond our immediate influence or direct control. When presented with significant and life-threatening challenges time is suddenly measured in moments not years and moments can seem extraordinarily brief.

Peace for the restless soul - Lulworth Cove

Peace for the relentless soul – Lulworth Cove

On Saturday it was M’s birthday and rather than look for useful yet useless material goods I opted to create moments – experiences that will endure time even if one or the other of us doesn’t. It’s a fact of life that neither of us will last forever but our memoires might if we write them down, record them in photographs or share them in stories for future generations.  With that in mind and as a surprise birthday getaway I arranged for us to spend a few days in Dorset. M was duly surprised and pleased. He enjoyed the location, the warm weather, the food, the wine and the great outdoors. Our brief sojourn presented a welcome escape for me too following months of non-stop activity thanks to a continual stream of increasingly paradoxical issues at work. Good fortune smiled on me and what started as a means to create enjoyable memories for M on his birthday also became three days of peace for this somewhat wearied yet relentless soul.

The last time we visited Dorset I’d just finished treatment, a whole twelve months of it. I could barely walk and found myself exhausted every hundred yards or so on flat ground. Climbing stairs was virtually out of the question. As a shadow of my pre-treatment self I remember my inability starkly and cheerlessly. I also remember how very glad I was to be alive. To prove it I pushed my battered body to its limits. On reflection I afforded little allowance for the gruelling assault my physical self had recently endured because treatment was over and I wanted to be me again. Submitting to a range of rare yet debilitating long-term side effects was not the outcome I  intended.  This refusal to accept my suggested limitations may go some way to explain why M remembers our visit but doesn’t recall any trace of my incapacity, frailty or complete absence of stamina. I also had very little hair at the time yet it transpires M remembers nothing of the seven months I spent as a translucent Gollum-like creature, entirely bald, without eyebrows, eye lashes and missing assorted toe nails. For him it seems the year between my diagnosis and final Herceptin treatment is something of a tabula rasa. All the details have been erased. The same is not true for me. I recall details of treatments and appointments, waiting for results and wondering what next…

Aside from regular follow-ups that time is now past and though I rarely wish my time away I am glad to be the other side of diagnosis and all that it entails. Damaged joints remain damaged but they are manageable and largely compliant with the wishes of their owner. Stamina continues to grow and Herceptin weight-gain continues to resolve thought that is taking much more time, effort and discipline than I’d ideally hoped.  Moment by moment life returns to near normal, so much so that it overshadows the prospect of an unexpectedly swift demise. The slate is never entirely blank, every cancer patient knows that, but it is clean enough to support the odd daydream and make little plans for the future. In a world where miracles are increasingly rare that is miracle enough for me 🌠

Sentience

Like one, that on a lonesome road
Doth walk in fear and dread,
And having once turned round walks on,
And turns no more his head;
Because he knows, a frightful fiend
Doth close behind him tread.

    

Samuel Taylor Coleridge – The Rime of the Ancient Mariner

Sailing Away

Sentience is a blessing and a curse. Some days are more cursed than others.

I didn’t watch The ‘C’ Word. I followed Lisa’s Blog but didn’t have the necessary psychological flood defences in place to watch her story played out on television. A dramatisation and by all accounts a very good one, it might be better categorised as reality TV. It reflects the harsh reality of breast cancer where life no longer comes with a happily ever after guarantee. Some people with breast cancer do not survive. Some people with breast cancer die. Some of them are very young.

Survival has been playing on my mind a lot lately because there is no rhyme or reason to it. No-one knows who among us will outpace the frightful fiend, who might be forced to endure it to the bitter end or who might find themselves facing it on more than one occasion.  This is ambiguity on anabolic steroids and uncertainty reigns supreme. In this version of reality sentience is more curse than blessing. Lately it seems for every survival story there are multiple stories of an all too early demise.

As humans with a limited time on earth we must learn a crucial lesson – never take anything for granted. Health, strength, life itself, these things can all be taken from us in the blink of an eye.  Most people don’t need to think about mortality on a daily basis and that’s probably a good thing because life would be very depressing if we did. Those of us who do think about it – a thought pattern that is almost inevitable after a life-threatening illness – probably do ourselves no favours. Worrying about our own mortality doesn’t change the final outcome. This is another scenario where sentience proves to be more of a curse than a blessing.

So what of the blessings? Feeling the sun on our skin, watching grass grow, celebrating another birthday, anniversary, Diwali or Christmas are all blessings. Walking in the park, riding a bike, reading a book, those things are blessings too because life after cancer is difficult. It throws up questions for which there are no answers and searching for answers offers no reprieve. The simple act of waking up each day is a blessing in this reality, when you have no idea how many days are yet to come.

Chrestotes: the quality of kindness.

Someone once told me a cancer diagnosis is the fastest way to find out who your friends are.  True friends will shine day and night while fakes become increasingly conspicuous by their absence. When your world shakes over twenty on the Richter scale another earth shattering revelation – you’ll be abandoned by people you care about – is almost as shocking as the diagnosis itself.  I remained open-minded and hopefully optimistic while chemotherapy dissolved more than just the cancer.

Three years on I’d love to report that my optimism was well placed, the advice proved invalid and all my friendships remain intact but I can’t.  I’d like to share an explanation for the disappeared friends but I can’t do that either because they evaporated into the ether like the crew of the Mary Celeste. I guess cancer is still too much for some people to deal with.

But the story doesn’t end there.

Aviary Photo_130718654939381437The other part of the prophesy – true friends will shine day and night – is equally true.

They shone, they shine and they keep on shining 🙂

I feel very fortunate to have true friends who are hugely supportive, thoughtful and encouraging.  They demonstrate all of the qualities of chrestotes: compassion, consideration, sympathy, humanity and kindness.

They’ve sent messages for a speedy recovery, cards, flowers and gifts. I am touched and overwhelmed by their continued kindheartedness and support and I feel extremely lucky to know such genuine, compassionate and beautiful human beings.

I’ve also received cards and good wishes from family friends – people who know of my trials and tribulations via my father and decided to lend their support. My hopeful optimism wasn’t entirely misguided because family friends, friends of friends and complete strangers have all proven amazingly kind.

Of course a post about kindness would be incomplete if I failed to mention my father.  For as long as I can remember he has devoted his life to help others yet his own life has been far from easy. A lesser person might have become peevish and resentful – my father isn’t.  Throughout the process of diagnosis, surgery, treatment, recovery, first prophylactic surgery, recovery, the recent second prophylactic surgery and this new period of recovery my father has been an inspiration – encouraging, supportive, wise and humorous (he has an excellent sense of humour and sometimes laughter really is the best medicine…)

The kindness shown by my family and true friends will never be forgotten. It buoyed me through some very difficult experiences and continues to inspire me on a daily basis. WP_20150320_010I am so very grateful to you all.