New milestone, new mission

In a few days I’ll be 50. It’s a milestone I wasn’t sure I’d see and although it’s almost here it feels a little ethereal and bewildering. I’m one of an incredibly small number of women in my family to make it this far.

I don’t quite understand how I’m still doing OK when all our paths have been so similar. Most petered out at 40-something yet here I am, mostly intact, mostly functional, and mostly able to do the things 50, 40 or 30 year olds can do.

I’m enormously grateful for the extra time cancer care and treatment has offered me, though treatment itself was not a walk in the park. Regaining anything like my former levels of stamina, fitness and overall wellness has proven tougher still but at last this hard, hard, slog is paying off:

– 15kg lighter

– back at “healthy” BMI

– almost as strong / fit as pre-surgery

– auto-immune conditions in check

These are all such tiny things, the kind we take for granted when all is well. They may as well be miracles though because they make such a big difference to me. Time and improved quality of life are the most priceless gifts, and unexpected presents for a birthday I thought I might never achieve. Other women in my family endured extensive cancer treatment too, some even had the same chemo regime, but no-one can explain why I’m here and they’re not.

This is a mystery I’ll never solve and my time, precious as it is, will always be tinged with sadness for those who didn’t make it to the other side of cancer. They wanted, and deserved, another chance too.

It’s taken a lot of soul-searching to reluctantly accept we don’t all reach the other side of cancer treatment. This whole experience, mine and my family members, made me think very deeply about how I spend the ‘extra’ time I never quite thought I’d have. In death there is little I can do for my many loved ones lost far too young to cancer except honour their memory in the most wholehearted way possible. So it seems timely and personally meaningful that surviving cancer helped me chose a new direction in life, one where I can make a difference for others when they might need it most.

I know this won’t be easy but I’m thrilled to have been accepted to train as a nurse. I hope in time I’ll be able to give back some of the care, kindness and compassion that helped heal me enough to truly appreciate the value of life, the importance of choice and the significance of dignity in dying and death.

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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.”

Five things about Autoimmune conditions and me

I’m not an expert in this field but I’m trying to understand it as best I can. In much the same way that I set about researching information on my particular form of cancer, I’m now researching and learning about autoimmune conditions. I have them and they run in multiple generations of my family. Since none of my affected relatives are here to tell me about their experiences, I’m trying to piece it together myself. It’s a bit like looking for a needle in a haystack but so far I’ve discovered five things:

1. How many people are affected?

It’s difficult to find accurate figures on the number of people with autoimmune conditions. Estimates vary considerably. The American Autoimmune Related Diseases Association suggests 50 million Americans – more than twice as many as the National Institutes of Health suggest. That’s a significant difference. Most sources seem to agree women are more likely to be affected than men – that holds true within my own family. Overall, the prevalence of autoimmune conditions seems to be rising. As yet no-one really knows why.

2. How many autoimmune conditions are there and how are they diagnosed?

There are many autoimmune conditions – at least 80 to 100 and despite research, they can be difficult to diagnose. For some people diagnosis is made by accident when assessing a seemingly more obvious illness. That happened to me. For others, diagnosis becomes a process of elimination – which means undergoing many different tests to rule out common or more obvious causes until such time as a less likely cause is deemed the culprit. As a patient, this can feel frustrating and traumatic in equal measure, especially when the outcome always seems to involve more tests. This happened to me too. Fortunately my GP is not in the habit of passing things off as a virus or post-viral fatigue.

3. Does it run in the family or are the conditions linked?

With my scientific hat on, it looks likely certain autoimmune conditions are linked. Having one in the family might mean other members of the family can have the same or similar conditions. Having one condition myself might generate a greater likelihood of having another… Or not… because autoimmunity seems to be another a very complex area of medicine and quite poorly understood unless you specialise in this field. My level of science doesn’t extend to anywhere near the expertise required to get to grips with all of this. Even if it did, our propensity for focusing on specific diseases or groups of symptoms makes it possible to miss subtle links – hence the turbulent experience of diagnosis via a process of elimination.

4. Is it worrying?

None of us wants to be or feel unwell. Having unexplained and debilitating symptoms is worrying. Having test after test without any clear answers becomes far more worrying, even for those of us who’ve been through countless tests, treatments and operations before. Without solid answers, the hamster wheel of tests can eventually lead to self-doubt, questioning your sanity or convincing yourself you’re imagining it all. I only escaped this downward spiral because a very dear friend with CFS had similar experiences. She isn’t insane and hadn’t imagined her chronic and very debilitating illness, but for years an array of professionals told her there was nothing wrong, even when she could barely stand or stay awake.

5. Has it changed things?

It’s said with age comes wisdom and I’d like to live long enough to be wise. Surviving a very aggressive cancer didn’t grant me wisdom but I do think quite differently about life. My health dipped suddenly a few weeks ago and a plethora of tests ensued. It’s autoimmune, not more cancer. In my world almost anything is better than more cancer, even if it isn’t great. Pre-cancer I’d have ignored this latest health thing in favour of work. Now I have a more considered approach. Of all the rogue genes in my gene pool, ‘nine-lives-of-a-cat gene’ isn’t going to be one of them. I’ve spent enough time in hospitals to absorb the fact life is fragile. So I’m giving up the career I’ve worked my socks off for over the last 20 years because simply being here for my loved ones for as long as possible is more important to me than anything else. My work has been a buzz and somewhat addictive; stretching, fun, full-on and frustrating, usually in that order. I’ll miss that I’m sure. But in 2019 and for the first time ever I get to take a proper break, take proper care of myself, and get on with the business of living instead of simply existing.

If life zooms by like a bullet train, people along the route become a faceless blur. Why have a family album full of blurs when pausing for a while is all it takes to stay in focus, and experience the detail in full HD…?

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.

Hopes for the New Year

berries

2016 has come and gone. There were a few health hiccups for me along the way but nothing compared to the amount of grief and suffering in the world at large.  Now 2017 is here and already people are committing atrocities, inhumane and yet so tragically human. My hopes for a peaceful new year will just have to lie dormant for another 364 days and see what 2018 brings. Something tells me it’ll be much longer before we all wake up to find our planet free from strife with every vestige of humanity behaving as truly civilised. I live in hope though, as I’m sure many others do.

Since world peace is well beyond my capabilities, my hopes for 2017 are considerably smaller and more intimate.  While many people have been enjoying the Christmas break, work, study and revision (a lot of revision) have been the order of the day for our family. So my first hope is that those of us who’ve been working get a break and those of us who’ve been revising pass our upcoming exams and settle in to our placements for the year ahead.

My next hope is that my friends and family stay happy and healthy in 2017.  Last year was something of a trial for most of us and in the end we weren’t unhappy to wish it goodbye.  None of us is equipped to deal with too much death, despair and difficulty in such a short period of time.  I know I’m still a bit worn down by it all so a less eventful year on the bad news front together with positive physical and mental wellbeing for all of you is my wish this year.

The last of my hopes for 2017 is a personal one because this year marks the 5 year anniversary of my cancer diagnosis.  If I sat down to write all the things that have happened since June 2012, the challenges, the bête noir, the unending uncertainty and the sheer weight of it all I fear I might lose touch with my sanity.  So instead it shall stay in the past where it rightly belongs and I shall hold hope that health-wise, 2017 is incredibly, remarkably and boringly uneventful for me.  Because uneventful means the likelihood of a reoccurrence, whilst never fully extinguished, is considerably diminished from June onwards.

Whatever you leave behind from 2016 and whatever you hope for from this new year, may health and happiness be your faithful companions in 2017 too.

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

 

 

 

Remembrance

 

Maple tree, Clun

“It has been said ‘Time heals all Wounds.’ I don’t agree. The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone.” Rose Fitzgerald Kennedy.

It’s been a long while since my last post to FEC-THis. Summer has come and gone, Halloween and Guy Fawkes too.  My country remains perplexed by the decision of the majority of its people to say goodbye to the EU. The same confusion now looks set to grip the US. The catalyst may be different but the root cause seems similar and all the while, pestilence, war, famine and death continue to spread their wares throughout the globe. Tomorrow is Remembrance Sunday, a day when we remember those who have sacrificed themselves to secure and protect our freedom. Over the years many millions have sacrificed yet our freedom remains fragile and we continue to live in troubled times.

It’s good to remember but sometimes it’s good to forget.  Or at least try.

So much has happened since I last wrote here, some of it good, some of it not so good. Pre-cancer levels of health and wellness continue to elude me. Simple things like opening jars or bottle tops are more challenging than they might otherwise have been.  Running, climbing (stairs, steep paths, hills) and dancing are all possible in my head but  unimaginably taxing in reality. Reading, reasoning, analysis and deduction take effort when not so long ago they were entirely effortless.

Life is full of compromises and treating cancer to secure more days on Earth has, at least for me, meant sacrificing many things that came easily before.

Being sad or mad about all of this seems the most natural course of action but those emotions take a lot of energy and no amount of rage or sorrow has ever been able to change the past.  Like the deciduous trees shaking off leaves in readiness for winter, weaving rich carpets of amber, bronze and gold, the last few months have been a time of  reintegration. Time to be in the moment, no past and no future, no wraiths from yesterday or castles in the air of some mythical tomorrow. The trauma that was, the scars that are and whatever might light the way or lurk in darkness along the road ahead, none of it matters. It is what it is, no more and no less.

I began this journey because I needed to save my life, but I wasn’t saving it for me. Putting food on the table and a fire in the hearth for those who depend on me has always been the driver. Four years on, I finally realise my overwhelming sense of duty and responsibility for others is nothing short of a Herculean task – one that my tango with cancer leaves me ill-equipped to complete. So I’ve decided Herculean is not for me, whether that’s capturing the Cretan Bull, bringing back the Mares of Diomedes or simply being the person everyone expects to make everything alright.  In an earlier life this decision would’ve left me riddled with guilt, and plagued with thoughts of failure and defeat. Today it brings a gentle air of comfort, long-awaited tranquility and reprieve.

This weekend I’m remembering all those who sacrificed for my freedom and how very grateful to them I’ll always be. In a small and quiet way I’m also remembering myself.