First Past the Post

I'm two and a half years post chemotherapy and a year and a half post radiotherapy, officially 'In remission' of this constant, and in my case, incurable, disease.

Mostly I am well, often very well and everybody smiles, all is good in the world. I don't know how it is for others, many suffer much more than me, but I'm never out of touch with my reality. So many bad things in this world, so much hardship endured, by so many, I have nothing to complain about...."there's always someone much worse off than you", but I do sometimes sink into a self pity of which I am ashamed.

So when those neuropathy pains return, unabated, uncontrolled by simple painkillers or my hands won't work properly or my mind muddles in a post chemo way that can  only be  known by a fellow suffer, then I get down. Its not an all invasive 'down', not a deep hole, an empty pit, just a common or garden overwhelming sadness. That and a frustration for things not going away, not getting better all the time.

I see the look in my husbands face, his anger at the world for treating me so and I want to cry! These are tears because I don't want to hurt those people I love so dearly, those who give and will always give everything they can to help me...its as though I'm letting them down, making them angry!Voices on the phone asking how I am, willing me to be cheerful, be well, caring and uncertain...I want to soothe their fears not dissolve into tears.

And then there are those suffering other difficulties who post meaningful quotes on social media,  this isn't a competition as to who has the worst woes, its about sharing and supporting each other. But perhaps the hardest to bear are those who are ' The Cured'; they've known all the fear, had all the procedures, endured all the symptoms and side effects and finally have the 'all clear'. You'd think they would be the most compassionate, the ones to know how that axe head hanging over you feels, to understand the fragility of life and rejoice in giving back. But not always so it seems.

Perhaps its fear "will it come back, am I really cured, dare I even talk about it?") Perhaps its the exhaustion of enduring, no more energy left to give to others, Or perhaps its simply a survival strategy ("I'm out of the deep dark water & I never want to go near it or think of it again"). But you are the very ones who can do the most, you can offer the hand, sit down and really ask how we are. You know what it feels like, you've been there, we are still!

So the pity fades and the short lived tears abate in the light of those who really care. My husband hugs me, holds tight and kisses me gently on the forehead, my son reassures me with humour , my daughter with anecdote and my elderly father with resolution and pathos. The real friends are those who stay close; not many words, not flurries of emotion and certainly not an air of challenge or ignorance. No you are all the ones near and far that say one small thing, give one short glance, ask honestly, unavoid, even stay quiet, but I know you're there...each of you. And my heart sings!

Time passing, relativity ......early disease progression

It's been several months of family tension and minor turmoil since my mothers death early January. I firmly believe there's no such thing as a perfect family, we all have our oddities, our skeletons in the cupboard, our conflicts, but whatever they are be sure that they will not go away because someone special has died. Quite the opposite, the jealousies, the greed, the thoughtlessness and the fear are all magnified and all on full raw display.
My husband has often referred to nuclear family as the Eternal Triangle, even the Bermuda Triangle; emotions and actions bounce around, get stuck in the vortex or simply disappear. So, from all that care, to all that thoughtlessness; from those who travelled time & distance and those who didn't; all that attentiveness to all that neglect, people don't change. In short  it has been a difficult time.

And strange things too; a photo of my mum at twenty, an engraved cross...memories of many years and life long past. My brother fixated on detail, "Make sure there's no money in any of the pockets, check the drawers", that will be the underwear drawer? Son so strong and logical trying to keep the factions together long enough to sort out the world that exists when someone exits this life. And Dad, over forty years divorced, remarried and widowed, so emotional. Now this is not the Mills & Boon story ending, what might have been but his sense of guilt and loneliness, all a little bizarre considering the past.
But past must pass and triangles loose their strength when their sides are added to or taken away and so, as ever life moves on.

I struggled with resilience, physical  vulnerability, embedded in the past three years of my cancer journey. Fatigue, infections, insomnia, nervous debility, all froze me to the bone. I know we all have our worries, our sadness's, our grief to bear, but I found the wall I'd built to try & keep my positivity strong in the face of inevitable mortality, stopped me, stalled me, exhausted me. Those close have helped, uncertain how and worried I was vulnerable and I am much improved, much more stable now.

For those who are on this cancer journey, particularly when you know there's no cure, its hard not to look at life around and feel removed. Inside a voice is screaming, "they have no idea", "they don't have to live with this", "they can pretend it will all be OK". Truth is  we can't live with that constant fear, that lack of innocence that certain death endows. So I've lifted my head and set my gaze back to that horizon, that hope for the future, that light in the distance.

There was an old adage,when I was teaching, regarding behaviour management, that, 'If you can't do it, (contain or control a pupils behaviour), act  as though you can' and 'Move and speak  slowly and think quickly' and recently, these have come to the fore. So I've acted it, stayed calm, walked away, empathised, said little and tried to remain cool.

That is until yesterday when I opened a letter. I've always tried to face the reality of my illness and to that end have asked for copies of all reports written to my GP or other medics and this was a copy of such a letter. This was a letter from my oncologist to my GP practice outlining her findings and commenting on my wellbeing. Now we've got quiet close, over these years and this shows in her attempts to sound familiar mentioning my last holiday and my gym visits, but all embedded in the hard cold words of science.
All was reasonable as expected until I got to one phrase:
     'This means  that she is likely to have very early disease progression'.

The jigsaw shatters before your very eyes, the colours and shapes swirl into the far part that is barely vision and my security of being was shaken. We say little, reassure ourselves and then I remember that adage, act it, believe it, nothing has really changed. I have the privilege of living and learning about myself and my life and I defy anyone to do it better. And I have a wonderful friend Ron; partner, confident and love, to take my hand and will me to go on. Part of my very own Eternal Triangle a corner piece of all I take as precious. Head up girl, life is real, without pretence, life is  good, live in the moment.




And just to reaffirm this I received a message from a good friend, who has herself had to deal with a lot in life, to celebrate ' Women's Day' and it made me smile, really smile. It simply but beautifully said...

Thank you, you know who you are...

One little word is all it takes

It was a good spring and a great summer and, despite Brexit, France was a beautiful place to be. Our spiritual home and passion we have spent nearly six months languishing & working in your gentle climes and cultural by ways.

Back in the UK for autumn, the  place of our birth, we have felt somewhat isolated as though the world has moved on....we no longer belong, the jigsaw picture has been changed. And then there was the dreaded three monthly check up. First the appointment didn't come in the usual timescale, then the secretary was on annual leave and finally attendance at the Cancer Centre rather than the Central Outpatients'. None of these alone were of any real importance, but built on the nervousness  that surrounds these times, it all became a little fraught.

Now when you go to a cancer review you can never be sure what will happen. Often the medics have no more information but seem  intent, other times they have scan & blood tests and nothing to say, its all a little bizarre. As a general rule it seems that, the more people in the room the more interest and the more potential for bad news. This time I had had no scans or bloods and was not symptomatic so expected just the oncologist to be present. Two attending unintroduced medics and one link nurse plus the specialist meant I walked into a room full of rather anxious looking people.

As Id had an ultra scan done by my GP, which I had been told was all clear, I felt quietly confident that all was OK...suddenly it seemed otherwise. Its a strange feeling, your legs go from under you and your determination flounders. Like a prisoner faced by inquisitors I felt adrift, uncertain what was about to be said or done.

Apparently the scan simply showed some potential for grains in my gall bladder,hence the aching pain & nothing of any great concern and no sign of the dreaded big C. The assembled medical staff obviously expected me to be symptomatic, even unwell, but there I sat nervously healthy awaiting their judgement. Somewhat back footed they asked leading questions and then, when at last reassured by my responses, said I didn't need any treatment or tests...another three months.

Whether it was the confusion & resolution, the ease or just the moment I decided to be brave. Ive never been told directly what stage of cancer I was at and, unlike my normal forthright self I'd hidden in the shadows hoping that if I didn't know it might  not be too bad, but I felt I should be brave and ask.

Stage 4 of 4 Stages is a hard statistic.I heard the question, I heard the answer, but it didn't enter my cerebral cortext, I didn't feel anything...cold, factual, actual, empirical 4.A dark but emotionless miasma settle around me chill and damp, I couldn't think just look. It was not a surprise but the reality of the words lay heavy on my mind, made it hard to be positive. My specialist did continue to  explain that it had to be considered a four because the cancer had metastised to the lymphatic system, so theoretically it had to be Stage Four. " Can I say I'm in remission?" I asked. "Yes you can because you have not been symptomatic for over a year" she replied.

Searching for comfort & facts I said hestanttly, "Its three years in February since diagnosis, but four years in March from that initial lump, which was then secondary". My quiet oncologist met my eyes, not pity or compassion, but true consideration. "That's true" she retorted, " You  still have cancer, but its not active...we've not found a cure yet!"

Say it again YET, that's so important YET! That one little word made all the difference YET.

We skipped from that office, nothing had really changed, hard things had been said, yet my whole world had turned on its axis and I could breathe again.

'No age is a good age....'

Today was my 91 year old mums funeral. She'd had a full and  largely healthy life, but there are big family rifts, spanning years. So it was with some trepidation I put  pen to paper to write a eulogy.

It has been a difficult few weeks trying to steer a course between and across the rift that is my original, and somewhat dysfunctional, family. On Friday I return to the oncologist for feedback on my last scan; I see her three monthly, but scans less frequently, so a tense time.

We all know about the 'Stress Bucket' analogy, but I like the psychologists extension which adds, its not about how full or how empty your stress bucket is, its how long you have to hold it, at arms length. Well its been a hard five weeks since mum died and I've been holding that bucket for a long time already, so today it was an arduous task to stand up and read my piece for mum.

Don't get me wrong I'm very at ease with public speaking, rarely unsettled and happy to 'perform'; it went with the profession and the career, however, with all the emotion, that's a different matter.

But I did it clear, strong and unfaltering I spoke; shaking in every sinew as my physical body tried to contain the emotion flooding my brain, but I did it.... And  afterwards our son spoke, clearly, genuinely and so caringly; so proud of him.

All this to say goodbye to a mother and grandmother who tried so hard.

Why do coffins always look so small, but weigh so much? Not my mums frail chrysalis of a body for sure, perhaps the oak from which it was made? But I think it was the weight of all the 'loss' and the smallness of all that is physically left behind.

'Life's but a walking shadow, a poor player. That struts & frets his hour         upon the stage....'

Maybe not up to the Bard's wonderful prose in Macbeth, but here's my poem to my mum, written with all my love and care beyond measure and over all time.

                                                  

                                                             __________________

My mum wasn’t the usual mum,

The stay at home,   close as you can mum.

She was an everyday,   everyone’s mum.

Shared and sharing,    my mum.

Our mum, taught us care, fortitude, love and yes and   much more.

Love scared, love uncertain, but love forever, she knew ,  for sure.

Everyone liked her. Laughed with her….saw.

Our mum was their mum,    A friend to them all.

Our Gran ever constant, games and laughter too.

 Happiest together. Our eyes she saw through.

A walk from the bus stop,    a  chat one to one.

And holidays remembered,    those moments, not done.

A word about families,     advice on a friend.

The way to move forward, she helped many mend.

At heart always young,  in thoughts and in fashion.

She loved you all so much. Cos life was her passion.

Our mum didn’t ask much,   of life or its riches.

Just wanted a family, normality clichés.

She lived , as she died,  quietly serene.

The requiem of her life, her family I mean.

 And years past and passing, in memories be,

With laughter and loving she’ll be there you’ll see.

She looks at me now through your eyes  full of tears.

Love does not diminish,     it grows with the years.

                                                           ________

 I'd like to share a little piece  of family history

·         Victorian Valentines card:

·         OUR GREAT GRANDFATHER TO OUR GREAT GRANDMOTHER, while they were still courting

Remember me, blessed with thy love

I’ll n’er repine, what’er my lot may be.

The sweetest joy of all is mine.

If though remember'est me

To Irene....a Celebration of Life

Last week, an English friend, here in our nearby village died suddenly, after enduring for months the rigours of medicine and health care. Upbeat and loving life till the end she left a sadness of a journey but shortly shared.I tried to support in my own small way with short posts and caring words. Hoping my own  illness and thoughts would somehow help. But as was inevitable she sadly died.

I write, its how I cope, its my voice in the shadows, my hope for a picture to make sense of my 'Grey Jigsaw'. So yesterday I penned a poem, which is here to share. Not a life lost, more a life well lived and a soul well loved.

Today was the funeral, a different very French affair; secular, practical, beautiful, even delicate in how it allowed us all to morn. She was there with us, alive in our eyes, touching our hearts and each remembering....a real celebration of her life.

So here it is,

To Irene…….

A friend but just a short while, a life full and fine.

I’ll never know you better, our lives will not entwine.

You made people smile, opened up their minds.

You reached out for hope, not close the blinds.

To strive for love, to begin anew.

With courage fine your ‘poppy’ blew.

In care and humour and forthright fair,

You engaged the world, not sit & stare.

Life by its braces, lived to the brim.

Laughter and love and follow that whim.

To all who remember and knew you so well.

A sadness, a sigh but stories to tell.

And we look on now at a friend too soon lost.

A friendship not blossomed, your life the cost.

But first days of autumn will now always be,

In memory of Irene, steadfast ‘poppy’.

And as the wind blows, those dancing flower heads

We’ll remember your smile alive in those ‘reds’.

And the colours of autumn will play in our heart

Testament to your life and love not apart.

We’ll smile at the beauty, remember your name.

Alive ever constant, the memories remain.

At stressful times....

I’m feeling kind of anxious, the thoughts run on and on

I’m scared, I’m tight, I’m breathless.

 It’s gone, It’s gone it’s gone!

The edge of fear and hope lies revolving in my head,

I can’t suspend  despair,  step towards the edge.

Most days I feel no different, I go from day to day.

Then something slides apart and I can’t see any way!

And others, all around me must surely see it true,

I’m lingering and I’m struggling to see the whole day through.

It may just be a word, or uncertainty of time,

How someone else conspires, there is no reason, rhyme.

Then all about is spinning, the fear engulfs my brain.

The light is getting darker, I cannot see again.

And each and all continue, the journey of their life.

Oblivious of fatefulness, continuing the strife.

Happy in the knowledge that they know not of fate.

And smiling blind & jointly; no hour, no sigh no date.

I feel my own deep morning, a chasm of belief.

With tears of loss and longing. The floundering of my grief.

I can’t withstand the sadness, the darkness or the pain.

But just to hold you near, to have you whole again.

Im lost, Im cold, Im empty and sadness rules my heart.

I’ll love you oh forever; together or apart.

So kiss me low and loving , a childs hand to hold.

As daylight edges onward I need must soon be bold.

To lift my head and mutter, no shout out to the sky.

I live and love today, this hope will never die.

Hold on, look up and steadfast, not gone, not gone, not gone.

Not scared or tight, nor breathless. But one and one and one!

Age and Understanding.....the Sleep of Reason

It’s been difficult being back in the UK, as my ninety year old mum is struggling! Now for those of you who have close bonds with their mothers this might be difficult to follow, but my mum is a gem, , I love her dearly, shes one of a kind and liked by all, but she has never been close  and she struggles with physical proximity. Reared as an only and over indulged child, she does not make friends easily, though she has a wonderful way in being with people, so long as they don’t get close. When folks tell me their mum was or is their best friend I cry a little inside, I’d love to have that relationship.

Through thick and thin I’ve stood by her. When she got divorced forty five years ago, I moved home and spent my savings taking her on her then only foreign holiday. She has spent many holidays since, many weeks and weekends staying with us. When I was working I tried to see her every week and help in any way I could. But families are families and, unlike my father (who thankfully is also still alive) who shows affection readily, and my best efforts, mum and I are not close.

Sadly she has several age associated ailments, is getting frail and also lives on her own, but her difficulty is not so much in what is happening to her, but more about her inability to accept change. She’s built skills over the years to cope with the day to day, but she’s never stepped away from the safe or ventured into her own mind or really considered her own responses. For mum, everything is resolvable by spending money, blaming the world, buying favours or trying to control everyone.

I love her to bits, but shes become unable to accept help, afraid and in  denial as to changes. It sounds harsh, but she has no time for others; my cancer journey, my birthday are an irrelevances, she turns away. All the time she insists she’s fine but is driving the family mad. On the one hand she doesn’t want to be alone, but won’t accept help coming in or any change. She is too afraid to sleep in her bed, but insiists there’s no problem. She will neither talk to or about her difficulties, but just wants it to go away. Like a child, she is unable to understand that things change, she rejects anything or anyone who tries to help.

So each meeting, face to face or by phone is an emotional roller coaster and takes my resolve down. The social worker thinks counselling would help, the medics suggest assistance support and the family give a mixture of too much attention or not enough structure. Meanwhile, in my limbo of life, always now aware that I must needs enjoy every moment, ‘live for the day’ I struggle to help, indeed to cope.

I read a story about a psychologist explaining a concept to an eager audience. She asked someone to hold a glass, at arms length, outstretched and, as the talk continued she kept topping the glass up with water until it was full. At the end of the talk the psychologist asked the audience what they thought of the demonstration and, thinking the concept was that of the ‘Stress Bucket’, which when constantly filled, overflows, they responded accordingly.

“No”, explained the speaker, “it’s not how much emotion, how much stress, how much anxiety, that’s the water. Its not your ability to cope or offload or de-stress, that’s the glass”.

“The problem is how long you have to hold the glass full of water at an arms length!”

For me that arms length is my life to date and, I need to put down that glass  a little and breathe…