Where the mind leads...

Its been a long time coming, there have been a lot of tears and an abundance of caring, but yesterday I hit the jackpot.
Now it may not be the big win or the final cure, but it was life affirming and restored my hope. Close to a year since my last chemotherapy, nearly two years from that original diagnosis and a multitude of ups and downs, but yesterday was a good one.

When you spend your days and weeks wondering what those results will say, how your body will react, when the medics will take charge again, anything that gives you a measure of control, is blessed. When you march to the hospital clock and the rythmn of appointments and treatments,your freedom, is like that of a tethered dog.

But yesterday I was given a three month pass, a ticket to carefree life, ordinary and wonderful. For how many years do we take for granted the future and the hope of time? It just exists, always has and,so we tell ourselves, always will be.

So when the oncologist says she is pleased with the scan and that those days of radiotherapy have worked, you stagger with disbelief, gasp with wonder. I am not cured, its not over, but for three blissful months I don't need to think about the what ifs and my family and friends can relax and smile.

To see their faces, hear the catch in their voice, watch the sparkle  in their eyes and the tumble of their words, is a joy, pure joy. The saddest and hardest thing about cancer is the fact that you may be hurting the very people you love so much and yesterday I could lift that burden and laugh with them.

On Wednesday I took my mum for a 90th birthday Mother & Daughter Spa Day; a way of saying thank you and I love you, for all she has given in our not so easy relationship. I tried to think what  gift she would want and decided to feel young  and frivilous again and to have time was the best gift I could give and we had a wonderful day. She laughed and chatted to the beautician as though she herself were twenty two again, getting her nails painted and comparing life's stories, it was wonderful to watch.Two days later I get that gift of time back and hear her voice so pleased at what the medics say.


And my son and daughter each smiling into the phone when I ring them from the hospital corridor, I can hear the smile in their voices, the truly wonderful pleasure in their tones, its magical! Messages and calls thanking, informing spreading the good news, I am again humbled at peoples care and real pleasure.

And my husband, who can't stop smiling, fidgeting with excitement, stopping mid sentence to just stare, then smiling again, His brain full of plans and love, he can't contain his pleasure, doesn't want to, his joy is in every movement and every nuance of his expression and vocabulary.

On Wednesday, on the gym wall at that spa, I read a boxing quote and it touched me, but its only now I know the real depth of meaning of those words and I intend to stand  by them.
They read,
                         'Where the mind leads, the body follows...'

Stress, well relatively speaking...

On Wednesday I received a message from a very old friend and ex colleague. She overcame breast cancer some 24 years ago, but sadly the cancer has returned . Within the tissue around the site of the radiotherapy.

Ironic that the cure that had helped her heal had damaged the tissue and given cancer access to grow. At first this devastating news seemed very uncertain; operation, skin graft, chemo, radiotherapy.. uncertain!. But by Thursday with MRI and . scan results, it was clear that the cancer was localised and thankfully had not spread.
It's at these times you understand the meaning of 'stress'. This family have already stared into the abyss of cancer, grappled with the treatments and the fear. It seemed so unfair that they, and, in particular she, should have to face the ordeal again That's stress!

Then there was Friday morning, something and nothing in the light of all the procedures over the last eighteen months, a simple dentists visit. I'd been in August, have always maintained regular checks, but had a niggling tooth....maybe part of a filling missing I thought. Unfortunately seems I have a badly decayed molar, below the gum line and an extraction is necessary. Silly, its only an extraction, been there before, but it just got to me. Maybe its past experience; dental surgery, a broken jaw, but more self pity....my stress bucket overflowed. Single stress, not the real, double hard fear, sleep stealing with your face hard against the wall...bit it got to me.

Then Friday evening came and the news broke of the carnage on the streets and in the theatres and restaurants and bars of Paris. Innocent people, enjoying a night out, relaxing, suddenly had their life cut short, their friends and family devastated and a nation in morning. Stress on a national & international scale.

Now the thing with stress is its relative. That little word, so readily used, is always, always relative. Yes my friend is in a difficult place and has to undergo surgery and skin grafts, her family have weeks and months of worry. And yes my minor dental anxiety has to be dealt with.

But for all those families scarred forever, damaged; all those relationships destroyed, hope ended...a very different dimension to stress. We all need to remember our relativity, consider the fairness and analyse the depth.. it still feels overpowering, overwhelming and debilitating, but at least today we can get up and move, we have actions we can take.
In Paris some innocent people have lost that choice, they will never get up and move again.

Get by with little help from our friends...

I got to feeling gloomy,
No reason, just too much.
Those words, so far, not easy,
Be quiet, do not fuss.

And tired, keeping cheerful,
And smile if I can.
Above those words of medicine,
And love of this one man.

It's 'metastatic' movement,
It's 'palliative' care.
It means nothing on the paper,
To me it's everywhere.

I can't escape the meaning,
I can't avoid the fear.
I try to cover over,
And bring my loved ones near.

And bombs and guns and suffering,
All worldly woes and fears.
Above those words of freedom,
The bigotry and jeers.

Unlike those tragic victims,
My battle gives me time.
To say the words that matter,
To make a peace with mine.

But cloudy, dowdy,Sunday
And sorry for myself.
The words that clog my heart strings,
Lie dusty on the shelf

I think people have forgotten,
Its all gone on so long.
I'm  crying in the side-lines,
It surely must be wrong.

And have you seen how well she looks?
And yes she seems content.
It cant be what they say it is,
It can't be what she meant.

They cant believe or fathom,
They cant maintain the pace.
They've given hope and kisses,
They've looked me in the face.

But months and years are passing,
And now as time goes by.
We're left to keep on smiling,
And always wondering why?

So cry alone and silent,
So love can give me hope.
So much intense emotion,
So far, so near to cope.

And Paris streets are shaken,
And Syrian children cry.
And I consider lucky,
I know the reason why.

But need a little help now,
A visit or a word.
The world and we need healing,
Your  voices must be heard.

Content' and 'well' and 'happy',
The mirror can tell lies,
Just look a little closer,
You'll see it in my eyes !

So share with all a smile,
Give each a word, a thought,
Remember we're in this together,
This life, this world....or naught.




.

Time,time, time to see what's become of me

It's a sort of in between feeling, a limbo, as I wait, yet again. Finished the last of ten radiotherapy sessions eight weeks ago. Saw the oncologist after six weeks, further scan after seven...its all numbers, everything measured in time, my life counted out.

Used to be I measured time by school terms, seven to eight weeks of work to every break; booked appointments, family visits, friends activities and yearly celebrations marking the time. There were jobs to do in those holidays, people to see, life to catch up on. And all the time plan for how to achieve the next goal, make the next step, whether that be personal or professional.

Holidays and hobbies, passions and interests and plenty of good times. I cycled, skied, windsurfed and sailed. On horseback or motorbike, gym shoes or walking boots. The goals were measured in numbers and levels: how far run, what grade in karate, what wind speed, which sail size and all those numbers celebrated.

And then there was professional development; Open University, London Externals, night classes and courses. Psychology & leadership, dyslexia and behaviour difficulties, headship and lecturing. Never staying still always looking to improve, understand more, challenge and question; my time devoted to those children & young people with learning or behaviour difficulties.

And more latterly the goals have been French orientated; early retirement, renovation, learning a language & culture and setting up a small holiday business www.abientot-art.com. More goals, more chalenges, time passing tick tock, tick tock...

And why am I musing this now, well it was all about long term goals and control. Cancer has you questioning or rearranging anything long term and the control passes entirely to the medics.So here I am in between: between the two worlds of what I was and who I am and waiting, pacing time.

Hence I was fascinated when I watched a programme fronted by Professor Brian Cox entitled, ' What time is it?' With his incredible mix of science and story telling he explained in stages how time is measured in different ways and that there is no definitive answer The earth is apparently slowing down on its axis, very gradually, but slowing and  time is thus moving differently. The Myans believed  in honouring space and the movement of the planets, a balance between time and space. Brian Coxs physicists assertion that potentially 'Time made space', was intriguing and rang home with me.

Time may be segmented, currently measured intensely, but always linked with perception.The time space continuum may be complex and hard to comprehend, but endless and everlasting.

 Now that's what you call long term goals....sorted!

When you're back to your old self.

Cancer is a funny old bed mate, constantly surprising you, always reminding you and never predicable.
I suppose its the same with all life threatening illnesses, the damage and the remedies all have their own side effects, their own set of problems. But with the Big C it seems the cures are seemingly overtly fraught with their own set of side effects.

Chemotherapy, dependent on its mix  causes nausea, fatigue, hair loss, memory problems, neuropathy, taste problems, hearing loss, appetite changes, nerve damage,weight loss or gain, bladder and or bowel issues, tinnitus, nail changes and many many more.

Radiotherapy, depending on how much & where causes nausea, skin problems, fatigue, bone problems, digestive & bowel issues, burns, local hair loss, taste & smell, joint problems and many many more.

Surgery can have a vast number of side effects dependent on type & complexity and cover both physical changes & psychological issues involved.And all the while the healing process is hampered by the damage to other systems caused by any number of therapies 

But its not so much the symptoms during the treatments that cause the difficulties, its the fact that they can continue weeks or months after the actual treatment. In the words of the medics, 'It goes on cooking' and so just as you feel you are improving, things slip back. Then on top of this is, the compound effect of one treatment after another, all attacking your body to kill those cancer cells, but also attacking & damaging healthy cells, delaying or impeding  your immune or lymphatic systems. The whole body has to deal with an onslaught of chemicals & radiation.
Now I'm not saying for one moment that these treatments are not worth it, they are designed to save or improve your quality of life. But unlike most  other times in your  medical life nothing is predictable, nothing can be taken as read.

Past history tells us that operations heal, limbs mend, diseases respond and symptoms improve; you take your cure and all goes back to normal.
But not so cancer, you are never the same, never back to your old self. We all try to put on a positive face, seem upbeat, look normal and do normal. So a wonderful night out with friends and a slightly different diet and bedtime, something that's hardly a hardship, suddenly becomes two days of symptoms & fatigue. I'm not complaining, just observing and noting if its difficult for those fellow patients, its very confusing for on lookers, for everyone else. one minute seemingly fine then not. Its difficult to explain, seems counter intuitive and is frustrating for every one. Its as though you have become instantly old, no matter what age you start at, things don't work; senses & limbs malfunction, systems and fitness falter.

As my husband, a cancer survivor of some twenty five years or more put it, cancer gives you immediate access to an  exclusive club; its not one you want to join , but you are a member  and that's for life. So a pain or twinge makes us think, an area of your body that's sensitive or a random cough can become a real worry. Is it back, am I in danger? 
Pain is a part of living, without it in everyday life we would injure ourselves more, undertake riskier activities and not learn what is healthy for our bodies. We need it to tell us when to stop, when to move and mostly we don't think about it. Our autonomic system just keeps everything running and our wonderful  bodies continue their amazing self healing processes. 

Pain as a teacher is something I learnt about recently, having injured my foot some five / six weeks ago. Initially & because of the cancer, my age and the fact that I'd recently flown, I was tested for DVT, lymphoedema and infection; scanned, medicated & massaged, but to no avail. It was only when all else was checked that an X ray disclosed that I had indeed broken  the second metatarsal in my left foot. Seems that the neuropathy, caused by the chemotherapy damaging nerves, which means I have limited feeling in my foot, had shielded the fact that I must have broken & then walked on my left foot.

With cancer you have to accept your vulnerability even the potential  of your own death. Cancer challenges everything about yourself, sets new rules, breaks old boundaries and never lets you know what's next. So when a friend said recently that they'd come and visit when, "you're back to your old self", my response was short & I hope not too harsh. 

Simply, "Make it soon. I'm the same me, but will never be the old self!"

To radiology, the art of gentle giants.

Arrived at radiology,
Bedraggled & bereft,
Post ops & chemotherapy,
And not much courage left.

And awfully claustrophobic,
You put me at my ease,
And answered all my questions,
And all my fears appease.

You listened to my ramblings,
With patience and respect.
And smiled at my uncertainty,
Were never cross or vexed.

So here's my little thank you,
For all you did for me.
It means a lot to each of us,
How caring you can be!

We're victims in a battle,
We're wounded in a line
With comradeship and humour
We wait who next, what time?

To you not faceless masses,
We're peoples husbands, wives.
To each you give attention.
You value all our lives.

I'll miss your gentle banter,
I'll miss your winning smile.
I may have to come back to you.
But hope not for a while.

So thank you from my heart,
For care and empathy.
The NHS triumphs again.
In Radiology!

C'est la vie et il ya une bonne vie... A short French break

OK in France, albeit temporarily, but back. I feel like a prisoner on parole, released from the prison of cancer and its treatments and for a brief time I can be normal; breathe the clean air and live.

We’ve laughed and cried together, wined and dined in style and all the time I’ve kept thinking, “These people don’t know, I’m just ordinary to them”, it’s so good to just be ordinary. This illness seeps into your soul, makes you question everything and feel apart from everybody, so it’s great when you can just be you.

My birthday was very special with meals out, gifts and wonderful messages. Lots of smiles and a short holiday in Amboise, the beautiful old town on the Loire river famed for its amazing light and tufa stone buildings. Leonardo di Vinci spent his last years here inventing & creating in his inimitable genius manner, until dying, at the then grand old age, of sixty seven. 

It’s a magical place, even with the tourists thronging its narrow historic streets, because it retains a dignity and renaissance charm and it gives me a feeling of great hope and peace. Maybe it’s the light on the water, or the crispness of the air? Maybe it’s the clean white stone raising from the valley floor in a multitude of turrets & roof lines. But whatever it is, I always feel revitalised.

It’s not been easy to take some of the comments about myself, because I look so healthy. Or the avoidance that some have done because they are afraid to say or not say something, but Amboise reminds me to keep things clear, to stay focussed. Truth is it’s always better to say something, even ‘like’ on social media, nothing shows just that no care. I’m planning for life and leaving the dross behind me.

So we've come back to our little village and friends visiting & planning social gatherings, it’s really lovely. I still feel a little out of sync, in a different time warp and when husband and friends talk I’m not sure where my head is, but I’m staying mindful and living in the moment, in the day and for the future.

What is it Theodore Rosevelt said,

‘Do what you can, with what you have, where you are!’

Well that’s me with a lot of help from family & friends. So thank you all, you keep me smiling and, like Amboise, revitalise my world and spread a gentle but clear light across my life, into every dark corner and your kindness touches my very soul.

Lost the picture, lost my place...le voyage continue mes amis

I'm in a place I didn't expect to be just yet. It's a difficult time and I have to  and think again.
I came back from France to see the oncologist, post PET scan, leaving husband there as we thought all was OK, only to find out that the cancer had spread /returned into a chain of lymph nodes in my abdomen. Son who was with me was brilliant & both took notes,asked questions and was hugely supportive. But it was a shock... I feel & look hale & healthy, but suddenly my jigsaw existence has become rather grey.

The overriding feeling is one of acute disappointment! Yes I'm fearful but more than anything disappointment! I'll miss another summer in France this time in having  probably 25 sessions of radiotherapy.

So what do you do? How do you react? Where is your head? I felt sadness but determination, fear but hope & relieved they could do something.

So here I am rather lost for words trying to communicate how life is & how I feel. Family &  friends have rallied, visited called chatted & consoled, but I rapidly came to the decision that I just had to get on with living.

 Strengthened by all the kindness and closing the door on those few who not just ignore, but actively show their distaste ; I have donned the gloves again ready for the fight. At the beginning of my treatment over a year ago my step daughter nicknamed me Rocky, after the fighter in the film... so Rocky is in training & will be next match ready.

Nights have been fitful or sleepless as by brain tries to assess the danger & bring me to that quiet place, where you can cope with getting on with living. Hence last night I was checking mails on the internet and read about the Paris Brest Paris distance cycle ride which comes close to our house in France & I thought Id check out its history.

Started in1891 this is not so much a race but an endurance test over a continuous 1200km and the participants are called randonneurs not cyclists. Known for its  'civilised enjoyment of cycling', this cycle ride is looking for the 'perfect cyclist, any distance, any weather  and self -sufficient'.

Interesting you might think but how does this relate to my predicament or indeed that of so many others. Well it was the quote at the end which made me sit up, literally, and take note, because the organisers of this continuous ride say its, 'more about challenging yourself than beating other people'.

 Sure there is a medal for all who finishing under 90 hours, but the whole emphasis is about your doing your best and ,according to the very gentlemanly rules,helping others along the way. Spectators along the route know this and cheer as much for the last person as for the first; they are 'all winners' because they are following their own quest.

So here's my mantra, I'll become a cancer  randonneur; I'll follow the direction of that distance race, but in my life real time. To quote their philosophy...'Have fun, go fast if you like, challenge yourself & others, but remember its not a race'.

Now, where did I put those bicycle clips?

Rocky the fighter... never give up

Thoughts the day before my oncology visit:

Is this pretence?
Is this a game?
Of self deceit,or other name?

Remission true!
Metastasis too!
No more to say, to know what's new?

Don't ask the question,
Don't face the fear.
I'll close my mind, re tune my ear

I want to ask, what next & when?
Does life go on; and then and then?
Dead man walking, tension high,
Oh sod it all, look to the sky.

I may not know
I cannot tell,
How long, how far, do I stay well.

At least I know to live the day.
To not let slip my time away.
To love,to cry to laugh & more.
Of friends & family true and sure.

So walk away all distant fears.
Face all full on, no sadness tears.
The day is good, the life is great.
Believe in hope & trust in fate.

Brave face painted,
Smile in place.
Emotions secured, the world to face.

So Friday morning,
Come medics all!
Beware of Rocky.
Cos she's on call.

She'll stand before you,
Defiant true,
Believe in magic, she's born anew!

Is this pretence?
Is this a game?
It matters not, I'm still the same!

Coloured Jigsaw Pieces...Amboise et Guedelon

Having got through a rather 'grey' time I was reminded that I needed to put a little more colour into this blog; look at the sky, see the flowers. Hence this post is about enjoying life & perseverance and what better way to nurture the soul than a little holiday.

So we spent a week on holiday from our holiday home in France, en route to our holiday home in England, still with me? In short, we are never sure which is our 'home', so why not alternate and why not go on holiday in between?

We packed up the camper van and set off north east following the Loire on a sunshine adventure enjoying the scenery & the culture. I say packed up because, our son, who stayed with us in France for a couple of weeks in April, had purchased an assortment of items to resell in England. These we added to & hence it all proved rather more than we had anticipated. To say we carried two chateaus and a pyramid might sound extreme, but even in Playmobile terms they are quite a bulk. Add to that an assortment of cast iron hardware, fire dogs & antiques, made the camper van both heavy & restricted.

The consequence was that we couldn't make up the full bed in the lower part of the van so had to use the pop up lid sleeping space. Designed to sleep two in the roof space, though I  think two children or very small adults, the restriction meant we opted for a double decker approach with husband on the upper deck & myself in a two thirds bed at van level.. A real feat of logistics and gymnastics at bed time reminded me of something a Scots friend said recently, ' If you're not living on the edge your taking up too much space'. Now think he was referring to life & living to the full, but it certainly was true each night as we manoeuvred into bed, particularly when fit of the giggles overtakes you or you  forget something & have to start again.

We'd also bought a number of small gifts for the family, which also had to be accommodated in the living / sleeping area/ mostly these were not a problem but the garlic (much loved by our daughter& much cheaper in France) was a step to far. Now you've heard of sleeping with wolves, even sleeping with the enemy, but sleeping with garlic right next to your head when temperatures were in the mid twenties, now that's another issue!

But for a real test of creativity,perseverance and adaptability the  two main venues we wanted to visit were Amboise and Guedelon. The former is a pretty town on the Loire river & was the last home of Leonardo Di Vinci, the artist, scientist, inventor & amazingly creative thinker. The old Amboise is a noble walled town of great age with white stone buildings towering above the river and narrow streets with small shops, the buildings of which cannot have changed in centuries. Its a place of heat and business; heat from the sun which always seems to bless it & busy with people, now tourists but in times past traders and visiting gentry. The colours here are not the only reason the great artist & inventor came here, he followed his patron who provided a house here, but the light is quite special & the blues of sky & river wonderful.

Guedelon is the site of a medieval castle that is being built from scratch using authentic medieval methods, skills & all local materials.We had seen a TV living history programme about this enterprise, which is already 15 years into construction and were intrigued to see it in reality.

To say we were blown away is a massive understatement, it was incredible. The scale of the work, the number of the trades & skills, the back up and the dedication of these mem & women is amazing. Everything uses the technology of that time, the only concession being to basic health & safety in terms of hard hats (disguised under leather or straw) and steel capped boots, but so well used over the years that even they blended into the scene.

From giant twelve foot  man wheels used to power the winches to lift the huge stones (bit like a huge hamster wheel) to safety mesh made from hand twisted wax string & hardened all the tools & all the equipment was real. No Disney look alike with people in costumes, no, these folk lived & breathed the life, working every day; hewing wood, carving stone, digging clay & throwing pots, making tiles, blacksmithing nails & tools and all by 12th Century standards. We were spell bound, so much dedication, enthusiasm and perseverance beyond belief. Fifteen years in & a predicted forty plus more to completion, before you have a brand new medieval château. And everything on the site comes from the surrounding forest, quarry, soil and all the colours are or the burnt ochre range. From deep reds & browns, through oranges & yellows to pale creams, every colour is of the earth; the over riding impression is terracotta.

So here are my colours in this jigsaw of my life & journey with & through cancer. they are the clean air crisp white & blue of Amboise and the deep red & oranges of Guedelon and both signify people who have hope & belief beyond the known or even possible.There are no certainties in life but  if you can see the uncertainties as opportunities and the mishaps as time to be inventive, then the journey just takes on a whole new hue.

And where did we end our holiday, well at Le Touquet Paris Plage, on the northern coast; a flamboyant, pretentious but fun French seaside venue with white sand & blue sea.A friend told me to look for those thin places where the sky meets the earth, they're special! Well I found mine staring at the curvature of our beautiful blue planet and into the smiling eyes of my loving husband.

Oh la la...un petit morsel

Well I've sampled the very adequate French health care system yet again. Reluctant though I was to step into the medical quagmire I had to do so as the pain in my side did not go. Time scale ran roughly like this:

• Vendredi: Saw french GP who examined & wanted further tests.
• Samedi: Bloods taken at nurses section & urine sample all dispatched to the lab.
• Lundi: Ultra scans & x ray investigation at Mayenne Clinic & came away with the plates & a full report. Pharmacy test results collected.
• Mardi: GP examined, nothing obvious 'pas grave', but awaiting urine extended tests.
• Mecredi:GP rang the house infection found causing problem to the kidneys script for antibiotics left for our collection.

In short within five days all was checked, solution found & on the road to recovery. Cost in euros, just over two hundred, cost in peace of mind & ability to sleep comfortably, beyond price.

As always the differences in the two systems (UK & France) intrigue & amuse and added to my continuing medical saga. First was the fact that you must always acknowledge social niceties even when in pain or fear, so you must greet appropriately, give due time for deliberation(at least twice the time you'd expect for a doctor to take in the UK) and show no response & certainly no humour in the face of the gravity of the procedure. Secondly you must always be aware of the French preoccupation with  fine food and all things relating to the eating etiquette & process. Its not simply, 'don't eat from midnight before the scan', its suggestions for light 'dinner' and a repeated emphasis to take ' a little bread,a little cheese~ a petit morsel in the car in order to sustain yourself between the clinic & home.

Then the clinic itself, the exterior resembled a small house with tubs of bright flowers situated on what appears to be a suburban road; bungalows & houses, people trimming hedges & walking dogs. Inside a state of the art medical facility run with military precision and polite efficiency. But then there's the pretty seating areas with tasteful art work & fake greenery and all the patients have to greet each other 'Bonjour Monsieur/ Dame',cant let the social niceties slip.

So I finally get to the ultra scanning & x ray part, the working area of the clinic and everything is done very precisely, though all a little surprisingly. Now usually in such circumstances the NHS provide a back fastening unflattering coverall robe & cover most of the not needed parts like legs or upper torso with sheets or blankets. So I was curious to see what the French would do; fashionable over garments, 'haute couture'? No, simply strip off ! I asked for clarification, in case my language skills had let me down but no, take off all your clothes & lie on the bench, the doctor will arrive soon.

I've always criticised the prudishness of the English system which insists on covering every possible unnecessary inch. Even at the point of imminently giving birth, having rushed into the cottage hospital, I was asked in the UK to "neatly fold my clothes & put my legs into the green cotton covers", the phrase 'bugger off' was shortly overtaken by the later stages of  labour contractions.But  in France, here I was no robe, nor sheet to hide my modesty, feeling somewhat vulnerable awaiting the doctor.

And when he arrived, looking like a  lab technician, white coat, high buttoned and jeans, I was questioned about my medical history for some five or more minutes, all the time stark naked lain on this bench, bizarre! Then came the internal examination, now to not go into too much detail in England the apparatus is covered in what resembles a plastic bag, not so in France; obvious really a 'French Letter' and choice of Durex colours!

Finally, the French  GP was very reassuring; it was all 'normal', 'bon'. As she oh so rightly put it, "Worry makes the pain stronger" and I was, within days, well on the way to recovery with nothing more than my dignity damaged. To borrow a phrase from my fellow cancer patient & friend "I'm out of the hole", but 'oh la la' it was a  hole with a very difference.

The rocky road to positivity....

Well we got back to France; eighteen months of operations and treatments; a helter skelter ride of diagnosis and scans; too may drugs, too many uncertainties; lots of support, family & friends; yeah we got back to France.

I suppose I assumed all would come right, my health would go on improving, life would rally round and things would slide into a new sort of normal. People who had shown disregard would show compassion and situations and ailments that occur would just blend into our improved positive outlook.

It was never going to be a ‘normal’ as before, innocence lost & fears faced, but some kind of ‘normal’. It’s true I am beginning to build my fitness, I have returned to the village classroom and we are rapidly catching up on the maintenance of all those months of neglect. The house & garden are blooming and our gite is nearly out of mothballs & ready to run.

But you never know, once the Big C has planted its seed in your body & mind, the tendrils, real & worried about, stay forever. People, it seems, don’t change; many stay stalwart & positive, happy in our return to the country & health, whilst others remain unempathetic and harsh. I wonder if they ever consider that one day this or something much the same will hit them; we all have to face mortality, there are no free passes; I wonder then how they will feel & how they will expect others to react to them.

I have, for the last ten days been suffering from a pain in my right flank. Initially sharp and intermittent, then gradually less acute & more constant, an ache which has lowered my outlook and lit up my fear. I have taken the medications, drunk plenty of water, rested & exercised in equal measures, but nothing has made it go away: So today I had to grit my teeth, step out of my safe pink granite farmhouse & step bravely into the world of medicine again.

Now if you've ever had a serious illness you will know how you just want to be normal, want it to end and the last thing you want is the uncertainty of it continuing or worsening. My husband put his arm around me & stared deeply into my eyes, he was willing me to be well...loving me better.

And love is what will make things better; repair or renew, give surety or solace, through the uncertainties of this journey and indeed life itself. And for those who find me or my illness a challenge, I make no apology; I don’t intend to convince anyone of my worth. I stand with the people who truly value me; they give me the strength to go on.

Just for a while I’ve lost some of the pieces of the jigsaw, my picture is incomplete & I need help to find those pieces, but I have people who will do just that and for that I am so grateful. You know who you are. You are the ones who stand quietly and gently take my hand, actual or imaginary. You are the ones who don’t have another agenda, don’t feel challenged or confronted. You pick up the phone, type the text or simply think of me. Even when you don’t know what to say, even when there is nothing to say; you are my silent guardians on the path to positivity. And I thank you for that gift of life...

To a lost friend

It seems that life is cold, some people turn & say.
My daughter friend had cancer and theirs didn't go away

They tell you every detail and don't forget the pain,
Degrees of endless suffering; again, again, again!

The rarity of the cancer, the treatment they endured.
"Oh yes its worse than yours was" and they just can't be cured.

I'm only in remission, the dice can roll again.
Just trying to survive and living with the pain.

So before you are so heartless & tell me oh so clear,
That detailed medical history, the carnage based on fear.

Remember I'm still suffering, fighting daily all I may.
Until you've lived the nightmare, don't comment on my day.

I know words are based on fear, in callous, selfish hurt.
You don't know what you're doing, when shovelling this dirt!

To say I will forgive you, an action I must take.
But please just do remember, its loneliness you make.

I've heard all the explanations. Whose worse, whose sick, whose dead.
Reserve your lamentations, just keep them in your head.

I'm hurt I'm sad, I'm bleeding.
Right here within my heart.
You used to be my friend.
You've torn that right apart!

Little words in the night...petit mots dans la nuit

Une semaine.
Deux douleur.
Trois repete.
Quatre horreur!

This time France.
Aching deep.
Medics grapple.
Need to sleep.

Feel the tension.
Tight with pain.
Deep anxiety.
Back again!

I'll get there.
But what the price?
Enter feardom.
Pain the vice.

Hearing the message...

Back in France for the 2015 season and sorting the gite for forthcoming guests. 2014 was a strange old year as I was diagnosed in the UK, with cancer, hence France and all things French had to go on hold. Operations & treatments over we have returned to France to re-establish our life here and build on our dreams.

As part of the after effects of the chemotherapy I have  hearing loss, which hopefully will repair, but in the meantime is a source of confusion, frustration & amusement in equal measures. So it was that on our journey back across the channel with our son all geared up to working on the house & land that several misheard words & phrases became a point of great hilarity.

It stated with the restaurant on the ferry & my confusion that the  dishes didn't quite sound right and as we had taken our own Coca-Cola with us, we might be asked to " Walk the plonk". Seems like I'm hearing French in a 'Hello, Hello' manner. Soon I'll be " Just p****ssing by" and saying this "only vunce"

The journey to our farmhouse was equally as crazy when , as son read out the name of one junction, instead of Saint James, I thought he said " Sid James"... a strange name for French village...oh well 'Carry On'.

Well at least my French brain does not seem to lag behind like my English chemo brain. I can't help wondering if its mostly more recent knowledge & that 'primacy recency rule' applies i.e what was the last thing to learn is the first remembered. Maybe its simply that the demand & supply of French words & grammar is more limited so I've less expectation & less of the language to loose. If so, it really would be a case of, ' Less is more'  and knowing my ears it really would be more or less 'Toulouse'.

Ode to 2013: A year on, poems from my operations days...

April 2013:  Muse while awaiting surgery

Here I am again, surgically pure.
ready for the medics.
To do their cutting cure.

Sheets and efficiency, questions oh galore.
Have I, will I, do  I.
More & more & more!

Nurses, doctors, medics.
Pressure, stats and calm.
Circle marks the cutting point.
Not too much alarm.

I wonder how many beds & wards & medics too,
It takes for me to ponder,
Life's meaning , oh so true?

May 2013: Post surgery planning the future...

It takes all these reminders.
Mortality and pain.
To concentrate the mind,
And make me think again.

So here's my plan this morning,
The way I want to go.
Leave hospitals behind me,
And true full heath to know.

I now sit here awaiting.
All done, alone, just me.
Good day, good year & plenty.
For us, for you, for me.

Two Blogs One Life...and loving it

Back in France and about to return to my voluntary teaching in the small village school.

Its been 18 months since I last taught there;  a year of cancer diagnosis,operations & treatments. So  I am on the eve of writing a piece which actually applies to both the blogs I maintain;  www.frenchchalk.blogspot.fr  and www.diagnosisjournal.blogspot.com ; a strange feeling, my two worlds colliding.

So what am I going to teach, well what else but family. "Je m'appelle Md. Machin, et vous?" I start again, mostly new / different children and  I needs must return to basics; names, introductions and family.

Very apt, in that, in France and particularly rural France,  ' mon famille' is all important. Indeed it was my family that was so important in my journey to recovery. More than a ' basic social unit related to one another', my family close & family of friends near & far have given me the encouragement to keep going.


So when I talk with the children and when we share our languages & experiences, it will mean so much more now.I will be communicating between my two worlds, merging  my France in France & my life with and of cancer.

So, Monday, in that small classroom will indeed be a joy; the joy of teaching, sharing, laughing, encouraging; in short the joy of living and that is difficult to write a lesson plan for. 

So here's my draft:           Lesson Plan for Life
OBJECTIVE: To share the joy of family close & far and understand how special they are
SYLLABUS / SCHEME/ PLAN: Learning intentions & Prior Learning
To communicate the emotion, recognise the limits and learn & apply prior life skills.
OUTCOMES:Key vocabulary & resources needed
Hope, positivity, resourcefulness and love
LEARNING ACTIVITIES: Warm up, differentiation and measurable goals.
So many years, so many faces and so much of the path trod. Yet still a lot to learn...
ASSESSMNET & EVALUATION:
Living & loving....

Now that's what OFSTED would call, ' Outstanding'

The Coloured Jigsaw...Ma vie est bonne

Here I am now, back well ensconced in the rural French life style and  a million miles away from the sterile medical world and the ever constant fears of diagnosis and treatments. 
Nearly eighteen months of uncertainty, not over but, at least for now in abeyance, officially no current active cancer, I am in remission.

I had met up with my fellow 'Living with Cancer' course buddies, well the few that could or , would or wanted to make it & we chatted,  laughed and finally, embraced & left our different ways. "Ring any time", "Remember we are one", we all agreed, but that would not be so easy, we felt the link, but it was not a commonality we wanted to share, not a similarity we wanted to develop.

So at the end of March, we settled our UK property & with son, set off back to the world we had been so abruptly torn from and the place & country we love, France. I suppose it should have been a good omen when, upon arrival we all felt immediately relaxed & for my son & husband, unreasonably tired.They toiled, they slept, they toiled they slept..a strange cathartic rythum of honest work and a year of mental exhaustion. It was as if the very French countryside had crept over us, soothed us, calmed us, reminded us of more innocent times and, like babes tired from our troubled adventures, lulled us to sleep.


We trawled the markets, restocked the wood pile and toiled in the garden: all good wholesome work making limbs tired & soothing our minds. Mindfulness is easy when you are focussed on the present necessity of setting nature in order, sleep becomes automatic when limbs are tired from strain & brains from grappling with language, social meetings & cultural differences. There's no room for speculation on mortality or anxiety about what might be when the present is so demanding & all around you.

Spring becoming early summer; from primroses to cherry blossom and endless greenery bursting into life. The migrant birds returning and bird song from early morning to late evening and all around the world  celebrating the season & the sunshine.So slowly we have begun putting our house, well gite & grounds, into order and rebuilding the  dream which has sat waiting for nearly eighteen months. We walked away in ignorance of what was to befall us, expecting to return in a few months to set up and settle into another summer in French bocage. Now we must needs start again!




We have had so much help & care in England, family & special friends who have gone so fa,r so many times in small  & large ways to help us. It has been humbling & was good to know they felt at ease in the knowledge that we were in France, happy & content. And then there have been the people here, who have helped & stood up to be counted and now  were waiting to greet, wish us well, dine with us, chat & check all was OK, reignite & rebuild old friendships.

Last night was one such occasion when we went out to eat at  a super restaurant weitha good French friends Nicole. life has not been easy for her this last year, but she celebrated with us, happy in our good times. At the end of the evening, her parting gift to me was a beautiful flower arrangements; it said it all, we were enjoying the good times and shaking a fist at the bad. My jigsaw pieces become increasingly more colourful and their links show wonderful detail of light & pattern.


And is it all idyllic ? Am I at peace with the world? Do I spend each day smiling at the blue skies & open vistas? Well sometimes yes, but mostly no. I still struggle with side effects & worry about what might be or how I ought to do more or get more fit. But good wines & fine French dining, give me a perspective on life & a realisum that allows me to relax & enjoy life for what it is. And when this little piece of paradise does not quite work or toil becomes too much and underlying fears raise their head, I've learnt a simple mantra from the last year...
"Oh sod it...la vie est belle"

The Medics Saga...reflections on diagnosis

The nerves are quite rattling me,
I'm getting quite unnerved,
A week away decision time,
I know its quite absurd....

"There can't be any changes,
The answers just the same.
So go away and live a life,
But do come back again".

"Its quite a simple question,
Like one & one make two.
We know all the combinations,
Just not how it applies to you."

"Our art is not a science,
We cannot read the runes.
We only know , you're doing fine,
Keep dancing to our tune."

"We can quote to you statistics,
Know factual stuff galore.
But when it comes to life & death,
Our knowledge is quite poor."

"We can't predict the future,
We don't have certain fact.
You are the unknown factor,
To keeping you intact."

"For all our seeming science,
And juggling of the data.
Our drugs will only treat in part,
Your will, will keep life later."

"So don't ask us all the questions,
Don't think we know the way.
That's in your own self power.
Each year, each month, each day."

"We have to save the patients.
We have to make them fit.
Us medics, limitations,
We only know a bit."

We conjure up our potions,
Repair, restore & heal.
The secret is not science.
Live life, live love...live real."

Empathy overload...

Well its now some sixteen weeks, nearly four months, since my last chemotherapy. I thought all would be good by now; side effects subdued, stamina restored and some form of normality returned to life. What I have found is that the goal posts for normality have moved permanently,I can't simply rebuild & live at the same level. My normal and me are changed forever, not altogether bad, just different.

And if I feel this, so do others around me, people only have a certain level of empathetic giving, beyond which they tire & cant sustain. I understand this well;at f irst there is the shock & need to show sympathy & support then the concrete aid & visits, the gifts & cards;its all according to plan. Then comes the months of treatment the intermittent accompanying illnesses and the uncertain test results, it must all seem bewildering confusing. Is she well, is she cured , has she still got cancer, do I need to worry, what can I do now? So the messages &  visits have reduced. No one assures me that I am in their prayers or thoughts, perhaps they think I've had my quota. The calls have lessened, it is I who must contact people & arrange meetings, down to me to make the calls or send the text. Its not a lack of care from others, its simply empathy overload & people have to get on with their lives, time moves by.

I was reminded of this today,remembering it was Friday again. Why Friday? Well since the beginning of the year, every Friday, a Saudi blogger called Raif Badawi, has been awaiting news as to whether or not he will receive part of the 1000 lashes punishment  given because of his assertions on line about free speech in a Muslim country. Initially the worlds press were full of this atrocity, then, as time passed fewer countries voiced objection. Canada & France and even our very own Prince Charles stood up and demanded justice. But as time passes everyone's empathy weakens, Raif is not headline news. True Amnesty International tirelessly campaign for his release, his wife & family in Canada fight  for a reprieve. , but the world turns on  & this courageous young mans plight gets forgotten. Its just human nature, people can't keep fear that alive, cant be that in focus continuously, but for Raif, life in fear does not diminish with time.

Well, I am not in that terrible position & I am relatively well. But I still have the diagnosis 'incurable but treatable' & I struggle daily. From the lymphedema  in my legs, as my body tries to cope with the after effects of removing so many lymph nodes and  the neuropathy (nerve pain) as my body attempts to repair those longest nerves in my hands & feet. Its not the cancer that is ailing me its the effects of the cure; those four operations &  six cycles of chemotherapy, in short Im suffering from the cure. Do I need to worry, well even I wont ask that question of the oncologist directly.
And will I be cured, am I in remission or cloud cuckoo land the questions & the answers are unknowable even for the medics. I sometimes feel like a fraud, attention seeking & malingering. I've endured the surgeons blade & struggled with the medics poison, Ive battled the nausea & fatigue so when do I get to say enough?

Seems like I never do. I must continue to take those small steps and hope those around me can see I am not returning to the person I was, that has changed forever, but am striving to be a different, stronger, focussed and carefree and more mindful individual. There are those precious few who have maintained & voiced the concern, held onto the need to support and, despite all that is happening in their lives, keep the contact. To them I give a gratitude beyond words; you keep me sane, make me laugh, lift my spirits and give me hope.

I've completed all the outer edges of the jigsaw, I have found all the key elements of the picture, I even have the big picture and its not so grey. But I now have to deal with all those green & blue pieces, the grass & the sky. So here's a big thank you to those few who have stayed the course, who sit with me still, through the hours of shaping the future & linking the pieces. You have my thanks, not for you empathy overload, but love.

Finding the jigsaw box lid...

Well I have completed the,' Living Well with the Impact of Cancer', free course, which is open to anyone living with or affected by cancer and very good it was too. A three day group course, spread over three weeks, it was fronted by the Bristol Charity Penny Brohn & funded by Douglas Macmillan.  The Penny Brohn Charity was established in 1980 and  recognises that,

 'when people are faced with the diagnosis of cancer, it raises a multitude of issues & emotions and that often, medical treatments alone is not enough'

I have spent an enjoyable & educational three days considering diet & relaxation, the psychological impact of cancer, emotions & relationships, financial & welfare considerations, spirituality, mindfulness & imagery; and all in the context of The Whole Person. 'Whole' as in; mind body, spirit & emotion.

So we examined facts & techniques, considered our responses and shared our experiences, skilfully led by medical & alternative therapy facilitators. And it was the shared experiences, the common norms and the strengths & weaknesses of the group, that lifted this course from mere  information sharing to the realms of self realisation.

Heavy words, but so true, as we each faced our angels & demons/ our strengths of character & our fears & emotion. So I want to say a thank you to all those fellow participants who gave & shared with me so much; its been a blast! We were part of, what my husband ( a cancer survivor of some 25 years) refers to as; 'A  very exclusive club, not one you choose or even want to belong to, but one which will always stay with you' and,  for me it was a privilege to meet some of my fellow members.

And at the end when asked what we took away from all our action planning & consideration, what was important to us, the responses were varied but all positive. From improved diet & exercise extension, to practising the relaxation or daily meditative activities
It made me realise that I need to adapt my thinking; its not just that I have cancer for life (whether it kills me or not), its about having happiness for life. The analogy with a diet comes to mind; we can cut back, exclude food types, starve & binge and do crazy stuff but unless we adapt to a healthy diet for life nothing will really change.  So to make this current feeling of being in control of my destiny, normal, I must practise. I must not just drift on the tide of medical diagnosis & vague outcomes, I must make this normality a state of mind.

So when asked what I took from the course I replied, " the knowledge that I can survive beyond  medics & statistics, beyond the uncertain outcomes and lack of control". I am greater than a body with cancer, I am a whole, thinking feeling, sentient being, and I can apply myself to live beyond cancer. In short, I am Gestalt person, the 'whole is greater than the sum of my parts' and my parts, like my grey jigsaw, are within my remit.

What did Penny Brohn give me in those three short days, it gave me hope. And as I look at the assorted pieces of my diagnosis jigsaw life, I think  they gave me a measure of control. I finally have a glimpse of the jigsaw box cover and the sun is shining in the big picture.