Welcome

I am writing this for anyone who, like me, has been pitched into a life-altering situation.   For me, it has been chronic pain, but the same issues face all of us whose lives have been dramatically changed: how to make sense, find psychic strength and hopefully improve our lot.   But the path has been more than coping – it has been discovery and often joy.  Thank you for walking alongside me.

 

 

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Saying No to Chemo

 

When it comes to chemo, there are two camps – and they don’t overlap.  Chemo is like Trump: you trust it blindly or you think it’s devil’s work.  And the wretched patient is stuck in the middle.

Because I have weekly plasmapharesis (where your blood is filtered and cancerous proteins removed), I cha to a lot of nurses.  One told me, “as a nurse, I would advise you to have chemo; as a human being, I would not.”  They all agreed we treat too much and for too long.

So how to make sense – and how to decide when it is my life on the line?  First, there is no cure for my rare presentation of myeloma; it can be treated and the inevitable postponed.   It would be a very different question if I could have several months of treatment and hopefully go on to live a normal life.   Or have a stem cell transplant, which I am too old for.   But with myeloma you hobble and hop. In my case, even remission is unlikely.    So I haunt the chat rooms and message boards to try and find out what it is like for patients like me.  The first thing I notice is that no one seems to be off chemo for long.  They go from one regimen to another and they don’t sound much fun.  

I read the research on the drugs.  Less for the side effects than to find how much time I would gain.  I keep finding articles announcing breakthroughs in myeloma treatments.  Encouraged, I read on to find the studies are small and the gain perhaps 5 months.  

Being a doctor’s daughter, I try and see my oncologist’s point of view.  He has to believe in what he dies; he couldn’t continue otherwise.  He is part of an army of believers, immersed in the culture.  What drives the chemo machine?  Certainly, the pharmaceutical companies in the US deluge doctors with gifts – the same psychology that charities use when the tape a quarter onto an appeal.  We may not be aware, but we are influenced.  Many doctors also work with big pharma on research.  Finally, in the US, the oncologists buy the chemo drugs and sell them on to their patients.  This must affect their thinking.  It becomes the gold standard and, although Canadian doctors don’t supply the meds, how can they offer their patients less than the gold standard elsewhere?

Nowhere can I find a balance.  I ask to see a palliative care specialist, but am refused.  After all I am not dying – yet.  Each doctor I see (four specialists in all), I start with the same statement, “I want quality not quantity.”  No one listens.  One doctor rants at me for 45 minutes and later writes that “it’s a pity she’s so afraid of chemo”  But I am not afraid; I want to understand my odds and be allowed to name a decision that suits my values and my body.

Against the instincts of my family, I try the suggested regimen, which is used for people having transplants.  My stomach, miraculously, survives, but three of the drugs give me hard, deep bone pain.  The steroids have me both wired and exhausted.   All the drugs have balance and dizziness as side effects, my ears ring constantly and my legs are numb.  If I am lucky I get Sundays well enough to see a friend.  

After five rounds, my CT scan shows no change; my proteins are down, but immediately start creeping back up.  I wonder how this can cure.   Everything about it is anti-life.   A giant nocebo effect, the opposite of placebo.  Everything life giving is stopped.  Each visit I am reminded how dire my future is – a self-fulfilling prophecy?   What makes life worth while also heals: connection, exercise, nourishing food.  But chemo stops all these. 

My pain is so bad, I spend much of the day lying down.  After a bad fall, I no longer take walks.  My head is too thick to think, let alone positively.  Foods and supplements that are cancer fighting like vitamin D and turmeric react with the chemo and are stopped.  My white blood cell count is too low to continue.  Wryly, I reflect that chemo sets me up for the major killers of the elderly: pneumonia, infections and falls.  Most myeloma patients die of pneumonia.  Now I know why.

My oncologist offers me thalidomide and steroids – for life.   My daughter, bless her, defies refusal, marches into our palliative care hospital and two weeks later I have an appointment.  It is another world.  A two hour appointment and for the first time she listens and hears me.  Hugely healing.  Yes, refusing chemo is a reasonable decision, given my circumstances; many of her patients do.  There is help all the way through.   She understands I need to see my grandchildren who live so far away.  That my outlook is spiritual: gaining a few months of drugged, stupefied existence is of no value to me.  What matters is a life well-lived.  As we leave, she says, “I know you are British, but do you hug?”  

It is now six weeks since chemo ended.  I feel well, energetic, sociable and engaged.  We walk by the lake under a setting sun.   Happy and at peace.  An Indian summer?  I’ll take it.

 

 

 

 

 

 

 

 

 

 

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Triumph and Disaster

If you can meet with Triumph and Disaster

If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build’em up with worn-out tools …..

Rudyard Kipling

 

John McCain’s death has shocked us to our senses.  It’s a rough, rude world we live in today.  Birds no longer sing, but the air is filled with angry tweets.   We now regard fake as true, though “truth is not truth” anymore, according to Rudi Guilliani.  And if we are questioned, we may “get trapped into perjury.”

Which is why I used Kipling’s quote: it seems to encapsulate McCain’s final years in politics.  When the crowds mourn him, we also grieve the loss of a simple knowledge of right and wrong:  integrity.  My kids school debated whether it is worse to steal from a blind man than a sighted one.  No one said that stealing is wrong – except me when they came home.   

Like McCain I was raised back when there were absolutes: it is wrong to steal, to cheat, to lie.  Of course, we weren’t necessarily good, but we had active, well trained consciences and we knew when we had let ourselves down.  Society had many faults, but there was a common goal, a standard we all knew we should try to meet.

Now we live on shifting sands.  Religion has slipped from an authoritive pinnacle.  Humankind has ascended: the worship of the individual, b ringing with it, according to Yuval Noah Harari in “Homo Deus”, a lack of meaning and direction.  Who do we worship?  To what do we aspire?  And if there is no longer anything bigger than us to aim for, where do we end up and how do we value our lives?

Like many, I am glad to be free of the perpetual guilt of sin, I question so much I was taught, but on one things am clear: as a species, we need meaning and it has to be bigger than ourselves.  Obama said it best,: “That perhaps there are some things bigger than party or ambition or money or fame or power, that there are some things it is worth risking everything for.    Principles that are eternal. Truths that are abiding.”

Through McCain’s example, we recognize this.  I hope we can hold to these truths, not the tinsel of fake power.

 

More info: “Homo Deus: a Brief History of Tomorrow” by Yuval Noah Harari

“If” by Rudyard Kipling

If you can keep your head when all about you
    Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
    But make allowance for their doubting too;
If you can wait and not be tired by waiting,
    Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
    And yet don’t look too good, nor talk too wise:
If you can dream—and not make dreams your master;
    If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
    And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
    Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
    And stoop and build ’em up with worn-out tools:
If you can make one heap of all your winnings
    And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
    And never breathe a word about your loss;
If you can force your heart and nerve and sinew
    To serve your turn long after they are gone,
And so hold on when there is nothing in you
    Except the Will which says to them: ‘Hold on!’
If you can talk with crowds and keep your virtue,
    Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
    If all men count with you, but none too much;
If you can fill the unforgiving minute
    With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
    And—which is more—you’ll be a Man, my son!

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Grace and Gratitude

 

We used to take “Holy Days,” back when we were  Continue reading

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Watch Where You Go

One of the benefits of meditation is watching your thoughts, so that you are not them, but an observer of them.  Disclosure – I am not a natural meditator and don’t do it as an exercise, but do live in a meditative state.  And am always aware of my feelings, so I know moment to moment exactly how I feel.  Like breathing.  So, it is easy to label them, with the added bonus of having the choice of being the feeling or watching it as a curiosity.

What meditation doesn’t seem to provide is what to do with them once you have identified them.   Yes, you can breathe through them, sit with them or best of all dwell in the observer.  That is, your core self, minus the petty irritations and busy work of living.  But what if you want agency, something I value greatly through my illness?

I came across great advice some years back from Barry Neil Kaufman.  Accept that I am observing my anger or fear and tell myself robustly.  “This isn’t working for me.  Is there a better way to feel?”

This immediately reminds me that I have choice.  Feelings are our unconscious brain’s way of communicating the sum of its observations.  We think we are using our cerebral cortex to make logical decisions, but there’s only so much rational information for it to work with.  Our unconscious brain gleans way more.  It is observing a myriad of detail, matching it to previous experience and collating it as a feeling – being nonverbal, this is the only way it can communicate with your conscious brain.   

In “Homo Deus”, Yuval Noah Harari describes feelings as algorithms: instructions on how to react.  You are in a forrest, see a shadow and hear  twigs crackling under foot.  Way faster than your conscious brain could weigh up possibilities, your unconscious is matching these with past experience and sends you “fear”.  Fear is a recipe for action: you run.

Much of the time we mismatch or overreact.  So, according to the advice “is there a better way to feel?”, I recognize that my perception may be faulty.  There may be another explanation – so often there is.  Now I ask, “What would be a better way to feel, a more productive way?”   Instead of feeling hurt and overlooked by a short tempered nurse, could I feel compassion for her overloaded schedule?  Which would leave me in a better place?

I used this some years ago to tackle a major stressor: the memory of my mother sitting weeping on my bed saying she wished my brother were dead.   I was six.  She had just had his diagnosis of severe autism.   Back in the forties, it was almost unknown and the only advice was to put him in an institution.   My interpretation was that unless I were perfect, I would also be wished dead and I spent my childhood feverishly trying to be OK enough that I would not be sent away.   In parallel, she worked hard to force me into the mould of the ideal child, a daughter people would envy to counterbalance the son they pitied.   Years later, I asked Richard Kaufman’s question – and my picture shifted.  No longer a judge to be feared, my mother was heartbroken and despairing.  My feeling shifted from defensive to compassion.

With cancer, I apply this daily: trying to live as the observer and asking how best can I react to what is happening to me.  I can’t feel hope as there is none, but I can feel peace, gratitude for the great kindness shown me daily and hopefully courage.

 

 

 

 More info:

“Son Rise” by Barry NeilKaufman

“Homo Deus: a Brief History of Tomorrow” by Yuval Noah Harari

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Six Small Words

Just six short words from a doctor I had never met before – and a lifetime of slights and hurts fell away.

First, he asked permission to use my first name, something no other doctor has done.  Immediately, the balance changed: I felt respected, not infantilized.   

It was a fleeting hospital appointment and he would have seen minimal medical notes.  I had been matter-of-fact and brief.  But while examine my breast, he asked if I had breast fed my children.  “I tried,” I answered, “but had breast abscesses – you can see the scar where they opened my breast and drained it.”   

He put his hand on my arm and said kindly, “Nothing has come easily for you.”  Those were the most healing words from a doctor I have ever heard.  He saw me as a person, not a statistic or a problem.  He was kind instead of authoritarian.  

Sure, we all have bad stories about doctors.  A gynaecologist friend told me he always knew if a patient was Enlglish because they never volunteered any information.  Of course, we were used to being snubbed and often the doctor refusing to consider any information hesitantly offered.  As when I nervously told my GP that my previous obstetrician had said I must never go full term again because my second child has been so large and I must ask any later doctor to send for my notes.   “Won’t be necessary,” was his immediate response.   I went that whole pregnancy terrified, as each checkup showed a big baby and no one took any notice of my history.

Then the doctor, checking my ovaries after surgery for ovarian cysts:  “Well, we won’t have to castrate you yet.”  Jolly laugh.  Would he have phrased it like that to a man?

Or my Welsh GP when I returned from Malta with a positive pregnancy test, having had a head on car accident.  “You’ll never get pregnant with your history – and if you are, you have done your best to get rid of it.”  I went home and cried all night; Mike was at sea.  And didn’t go back till I was five months.

Being a doctor’s daughter, I also heard the way patients were discussed.  Neurotic was a word frequently used.  I also read my father’s medical books, with particular horrified fascination over conjoined twins, who I was convinced were under my bed.  “Never feel sorry for them,” the book boomed.  “They can always get a job in a circus.”

To be fair, I have a wonderful, human GP here; the hospital residents are always pleasant, however busy.  My hematologist is very hurried, and worse, extremely negative.  The nurses tell me he is known for this.  He has never given me any hope -perhaps there isn’t any.  Nor does he understand my request for a chemo break when my grandchilden visit from overseas.

But one man looked on me kindly and healed my spirit.

 

 

 

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Adjusting Our Sails

“She stood in the storm and when the wind did not blow her way, she adjusted her sails.

Elizabeth Edwards

 

“If your heart is broken, make art with the pieces!”

Shane Koyczan

 

My mother used to tell me the Japanese built their houses of paper, so they would survive an earthquake.  Actually. It is the internal walls, but the idea intrigued me as a child.   Perhaps we should live in case of earthquake, not rigid wth fear, but supple like a willow tree.  The 1987 British hurricane felled centuries old oak trees, their tangled roots naked and impotent, whereas the willow bent with the wind and survived.  

So maybe our Protestant work ethic upbringing does not prepare us for life at all.  “Are you a man or a mouse?” my mother  would ask, ignoring both my gender and the great advantage mice have of squeezing under doors and through cracks.  A mouse frame of mind could have been much more use to me than the David and Goliath ideal she promoted.

When the shit hits the fan, what is survival?  Or success?  Not doing the same thing over again, bullying myself into reaching my “goal.”  How I dislike that driven word, which is about pushing, narrowing focus and “going for it.”  Being goal oriented closes so many doors, while with tunnel vision we pursue our objective.  To my mind, a successful human being stops, listens to intuitive whispers, changes direction if wiser.  

There will be short bursts like when we emigrated, which was very single minded, full of left-brained decisions, but a full life encompasses a wider view.  For this you have to be a whole person, not a mathematician, a banker or, in my case, a writer.

Years ago, I changed directions following a major illness.  I became a presenter and public speaker, something I had no knowledge of or expertise in.   It was very hard to drop the syndication network I had built up world wide – in the hope of audiences who might not care.  Until I enlarged my definition: I am not a writer or a speaker but a communicator.  Why did I throw away my markets?  Because my intuition told me very clearly that my immune system didn’t need to be sitting in the basement alone with my computer, but to be “out there” with people.

The willow tree bent.  Now, with cancer, my viability can’t depend on physical survival.  I can’t stand here, rooted and determined; I may not win a battle – unless I change my vision.  A year ago, what mattered was being alive.  Today, I understand it is not a given.  Strangely my objective has not narrowed, but enlarged.   Life is too limited; I must look beyond – at the hugeness of the soul.  So now the endless trips to hospital are not irritating interruptions to “life” but a series of warm interactions, the life blood of my soul.  

The chores of my illness are not downsides, but opportunities to grow and love – which I can do to the end.  The tree will bend and flow with the joy of living, not insist on length of life.

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Talking to Cancer

You try all avenues with cancer, starting with blaming yourself: am I a cancer personality?  Have I negative emotions?  Then you also try eating differently, perhaps energy work; you name it, there’s a therapy.  My doctor is attacking it with chemo and also applying the nocebo effect.  He never tells me anything positive, with emphasis on my being incurable.  Everywhere I look I read about the “fight” against cancer.   But I never thought to ask the cancer itself.

Last Tuesday, I lay awake all night with steroid meds pulsing through my body.  If I won’t sleep, I thought, let’s at least do something constructive.  So I talked to my cancer.  I have never felt angry with or betrayed by it.   More, bewildered.  So I imagined the cancer sitting in a chair across the room and asked: “What are you trying to tell me?”

Quick as a flash came back the reply, “I have been telling you all your life, but you never listen.”   So that means that all major illnesses were messages: mono at 20; cystic ovaries at 24; celiac disease at 43; thyroid collapse at 58; back surgery at 65.  And running throughout, the thread of back pain from my twenties on.  

I didn’t understand the back pain, because symbolically it sounds like lack of backbone, weakness.  Yet hadn’t I always pushed through, done what I thought I should, solved problems?  But I hadn’t listened to my body; I had used it in response to “shoulds” and those came not from me but outside: society, religion, my physician father.

So I really stopped and looked and listened.  Mono followed a frightening childhood, where my brother was institutionalized, where I lived in terror that I too would be found mentally wanting.  Now I realized that I had never dared be myself.  My creativity was dangerous – “next to madness,” my mother said.  My yearning for God brought a warning about aunts with religious mania.  My intelligence was dismissed.  “No point in university,” said my father.  “It will educate you to a point of dissatisfaction.”  After all, I was going to marry and be a housewife.  

“Never,” my mother warned, “let a man know you are clever.”   At 20, I was worn out with trying to fit a life I didn’t understand – so mono.

At 24 and 27 I had surgery for cystic ovaries.  Metaphorically, I had shut off my creativity.  At 14, I promised God I would never write again if only I were sane.   Having watched my outgoing younger brother fade back into himself: no speech, no eye contact, autism, I was terrified there would be something wrong me.  When would they notice?  When would I also be sent away?  I bargained with God and offered my biggest gift.  I didn’t write again till I was 29.   Were my ovaries symbolically my creativity?

All through, I tried for one goal: to send healthy children forward into the future.  If you screw up a child, that goes on for generations.  So I tried to stop family garbage at source.  And there was a lot on both sides.  Sometimes. I felt like the buffers at the end of a train track.  

I was trying to fit in, to do the “right” things in a strange country where I didn’t know the rules, not just for me, but for our children.   One Christmas when my parents were staying, the children made me a special presentation – “to the best mum in the world,” complete with a bottle of Cointreau.   My mother couldn’t bear it.  For the rest of her visit, she attacked me daily.  I remember my despair that I had done what society demanded of a woman just after the war.  Stayed home, put everyone else first – and it still wasn’t enough.   Was it coincidental that just after that, I developed digestion problems, primarily to wheat and milk.  Life and nurture?

Thyroid collapse – the gland that runs your energy?  What energy?  Mine seemed a thin, cold dribble, but the problems kept coming: three parents’ deaths in three years, running parallel to long drawn out constructive dismissal for Mike.  I was back and forth across the Atlantic like a ping pong ball.  

And my back grew steadily worse, the surgeries I had had back in the sixties had created major scar tissue, so my core was weakened.  But I still ploughed on – I had backbone, didn’t I?  And I never listened to my poor worn out body.  Just took a deep breath and tried harder.

“So what do you want me to do?”  I asked my body.  “I am listening.”

And, haltingly, it told me.  Health doesn’t mean selfishness, but giving from a full cup, filled by the generosity of the universe.   No need to scrape the barrel to the last of my resources, allow strength to  flow through me.   Live in and from my centre; keep healthy boundaries for both my own and others’ sakes.  Trust life and don’t live apologetically – no survivor guilt.  

As I listened, I felt an expansion of trust, a feeling of both giving and accepting – as easy as breath.  And I saw that the world I was taught as a child, of scarcity, tragedy, war and threat was sickness itself.  Why had I never dared to see the meadow beyond?

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