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