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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Spring from the Heart

The one gift of life is choice – or in terms of Genesis – free will. When this thought idled round in my head, my first response was, am I blaming the victim? Am I to blame for my lymphoma or you for your bereavement? Ouch!

Then I sat and thought, because this question is crucial to how I cope with the coming months. Viktor Frankl said that there was one last choice left to him in Auschwitz: how he reacted. So I am sure that how I react will change the quality of my cancer experience. It won't help to see it as punishment or sent by God. Perhaps as a message from my beleaguered body? My choice is to listen, with compassion, without blame.

My kind of lymphoma – very rare – results from my bone marrow making too many particular cells, so my blood will get thick and sludgy, hard for my heart to pump round my body.

I go inside and ask what is this a metaphor for. I see my blood trudging round my body. My heart glumly, gamely, pumping away: “I should do this. I ought to keep going.” A familiar echo: “I must, I should, I ought, I have to.”

“Should” is the opposite of generosity. It tars each gift, belittles every action. I have a choice: to give from a willing heart, to paint the canvas of my remaining life with courage. “I should be brave” is not enough. Life itself deserves a whole-hearted embrace. My blood cells should dance and ripple like a stream over stones. It is my choice.

 

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Walking Tall

Could see right from the start that attitude is a major part of how I go forward. Research shows that “difficult” patients survive longer than “compliant” ones. Even to the extent that UK's poor cancer survival figures are in part attributed to the British being so polite.

So many cancer metaphors are aggressive – fight, beat etc. While I can see the value in this, everything in me doesn't like waging war on my poor beleaguered body. I am a pacifist through and through, but not I hope a patsy. Theresa May described herself as “a bloody difficult woman” and look where that got her.

So, what could be a beneficial state of mind? I finally settled on triumphant. That doesn't mean I consider I have won; this form of lymphoma isn't binary. You don't destroy it; you just manage it. Perhaps I could model myself on the teacher in class, who you know as soon as they enter the room won't stand any nonsense.

NLP (neuro-linguistic programming) taught me the value of understanding and choosing my most resourceful state. That is, how you stand, walk and project when you are at your most together. Not the rainy days where knees are week and feet dragging. It stood me in good stead when my mother was dying. Each morning, before I got out of bed I remembered three times when I had been strong and effective (there had to have been some!). I got right into it: how I felt, breathed, moved. Then when the memory was strong, I anchored it with the word “strong.” Throughout the day, at every new hurdle, I repeated “strong” and back came that positive, “I can cope” feeling.

How to adapt this to deadly illness? Get up each day, looking out with interested, humorous and appreciative eyes, asking myself, “How would I act as a winner?” Walk tall and enthusiastically – how many times have I marched across Home Depot, reciting, “Walk as if you are not in pain.” So move as if whole, feel life energy.

This will sound so trite to anyone on chemo or in severe pain. I know and respect that. This won't be easy. But it is all I can do at this point to position myself psychologically as well as I can. So I will give it a go.

 

More info: British Patients too Polite to ask for Best Treatment – link

PS I looked for images of walking tall and all I got was giraffes.

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Listening to Life

Listen, my heart, to the whispering of the world.

That is how it makes love to you. Tagore.

 

How to pass a day? Mike spent this morning researching my lymphoma with the impossible name. He put together a comprehensive document – which didn't make cheerful reading. After thanking him profusely, I sent him to his drawing board, his best way of getting to his Zen spot.

So how to be in the face of all of this information? I remembered Tagore's words and listened to the whisper. Music. The iPod on shuffle – and it chose well: two tunes from my youth when life was golden, spread out before me like petals on grass. A gift to my body as I gently swayed to “Younger than Springtime.” Then the music I listened to over here in Canada while our eldest granddaughter was being born in England. All memories of hope and joy.

Sun pennies on the pool, the trees flow with the breeze. Life is talking, soothing, comforting – if I let it.

 

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The First Day of the Rest of my Life

Idly scrolling through Facebook. We are both flat and tired today. Then I clicked on the most delightful video of five-year-old Rilee Thorber dancing to raise awareness of dwarfism. She is so joyful, I smile along with her and realize her courage – from a totally different viewpoint. Not that of the compassionate outsider, but deep within I recognize I have been invited into an exclusive circle of those who cope long term and she is one of the members.

The shock has left me very weary, so am left resting with my thoughts. They ring a mantra in my head: I have cancer, over and over – as if trying it on for size. Perhaps a necessary part of acceptance, but I would rather stop. Also, it seems very important that this doesn't become my identity. So, of course, I put great effort into squashing it, diverting myself, reassurance – all the things that don't work.

Serendipity, my old friend, takes over. Picking up my kindle, the top book is Overcoming Unwanted Intrusive Thoughts by Sally Winston. Aha!

It gibes with my own experience: arguing with an unwanted thought doesn't work, instead it validates it as worth attention. Nor does asking for reassurance from a friend; the thought is now worthy of debate. It grows sticky and now it is impossible not to think of the white elephant in my head.

Yet, telling myself to ignore my thoughts, or explaining why they aren't true (which this one unfortunately is) feels virtuous. So does calling on God. Wow! The thought is now huge, blocking everything else and taking all my energy in the virtuous fight.

Don't give it the dignity of attention, says Sally. Accept the feeling of alarm and urgency; it is my amygdala dutifully warning me of possible danger or misstep. My amygdala has a pathetically low IQ, but is extremely diligent. Let the feeling pass. As in meditation, just observe.

“Float above,” says Sally. Of course, this is what I have been doing for pain. I know how to. For the first time, I realize how pain has prepared me for this. Odd gratitude.

Move above and beyond my pathetic self, like one of those videos where the camera zooms away into space, so you become a dot on the ground. And it is so small, when I don't look out of my eyes. When I am not the centre of my universe, but one stitch in a tapestry. With the honour of joining so many who are walking the same path – and those who have gone before.

Thank you, Sally.

 

More info:

Five-year-old girl with dwarfism dancing to shake it off – link

Overcoming Unwanted Intrusive Thoughts by Sally Winston

 

 

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Diagnosis Day

The cancer clinic is cheerful – if you can get over the name everywhere. I can see the point of euphemism. We wait till about 10.30 – sealed windows and stale air. I long for a breeze and birdsong.

In comes my “cancer team,” which seems the cart before the horse as I haven't yet had a diagnosis. “Tracy” takes my medical history and asks if I want counseling or a spiritual advisor. Have I got children – and where? On hearing South Africa, England and Vancouver Island, she renews counseling offers. Yet, I don't know how I feel as I don't yet know what is wrong – except obviously not good.

“Anxiety? Depression? PTSD?” Her pen hovers hopefully. No, just life. I feel fine. Surprisingly, I feel calm and coherent. Dr. M. comes in, looking weary. It can't be easy for him.

“We found something.” Waldenström macroglobulinemia, a type of lymphoma (blood cancer). He says it is “indolent”, lounging around, not getting on with it. So there is no hurry for treatment. The next step is a bone marrow biopsy, which he can do today or later. He explains the chemo, but says because of the indolence, watchful waiting is best now. He is going on holiday, so we set up a date in late June. Oddly, I feel numbly calm and able to both comprehend and remember what he said.

We stumble into fresh air and sunlight, walk back beside the lake to the car. George Duhamel's question I have been trying to answer since I was 15 and studying high school French, came back to me. “Is it better to be sad on a rainy day when the world weeps with you, or on a brilliant sunny day, that mocks your grief?” I asked it driving through sleepy English villages, basking in spring, driving my father to my mother's cremation. I ask it again now.

We head to Google when we get home. Waldenström macroglobulinemia is very rare: 5 in a million get it and then mainly white males. Only I would beat those odds to get a double-barrelled disease complete with umlaut. You don't get rid of it, just manage it. Chemo etc. will control not vanquish it. According to Dr. M., they will watch my haemoglobin. The cut off for action is 100; I am at 103, down from 108 a month ago; 120 last year.

Still feel calm, though my head is bursting with facts. Somehow, I still feel it will be OK. Not the usual OK meaning fine and well, but OK.

The kids are marvellous and the phone goes all afternoon – till my head buzzes. Bill is very quiet, wrapping me in kindness and hugging me. I tell my close girl friends by email as I feel too overwhelmed for more talking.

Strangely, I don't fault my body. If this had been a lump, perhaps I would see it as an enemy, want to expunge it. But lymphoma is everywhere, right through me. War and hostility is so against my nature that I can't see this as a battle. Rather, I am sorry for my red cells that have lost their way and their ability to turn themselves off. I feel gentle and kind – and see treatment as helping my immune system regain its power. I am sorry for my beleaguered body, that has been overworked and bullied by life – I want to extend kindness and hope.


Note: I am writing this in the hope it will help someone else. Not because I feel I am interesting, but I keep remembering how my doctor at the Pain Clinic thanked me for blogging my path through pain. She told me that it was very helpful to see the other side of the equation – and understand pain from the inside. Now, at the start of another journey, I can see clearly that what will get me through is morale, how I approach this and how I guide my underlying thoughts. Pain now turns out to gave been a blessing because it has forced me to do much of the work in advance.

Throughout this blog, I have referred to my husband as Bill – the name I gave him for privacy when I wrote a weekly column. Now, with his permission, I will give him his real name, Mike.

 

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Great Unknowing

Today, while having coffee with friends, the phone rang. “Dr. M wants to see you at 9.00 tomorrow morning.” Unexpected, yet not. In March, a routine blood panel had come back with a low blood count across the board. My GP waited a month and then ran another test. The numbers hadn't moved.

My GP checked off on her fingers: iron levels good, so not anaemic; B-12 good; kidneys OK (not sure of their relevance). “It looks like a bone marrow issue.” She looked hard at me. And referred me to a hematologist.

Waiting and wondering is always tough. We have been here before with a thyroid cancer scare. It's an odd feeling – in limbo – knowing that be tomorrow I could be soaking in a bath, relaxed with relief. Or stunned and trying to adapt.

Being me, I wrote it as it is always my way of clarifying and coping. These are my unedited diary notes:

Thinking about it makes it worse, more definite. Yet not thinking feels risky, slipshod as if worrying in itself is a protection.

When I got up this morning and dragged my back out of bed, finding a positive spin to the day seemed irrelevant. Life was larger than petty decisions. The canvas I am about to draw on may well turn out to be so big, that today's small choices are irrelevant. Determinedly not thinking belittles the gift of life.

Suddenly, clarity: what matters is not where the path leads; it is how each step is trod.

The bigger viewpoint – up and away till I am so small in the greatness of creation. The only thing that makes sense is the HOW of living – wherever it takes me. I hope that will be enough.

And so the next day, we sat with Dr. M., a friendly Brit, which caused an immediate connection. In my physical exam, all was good. He looked thoughtful.

“Leukaemia?” I asked, hearing the word drop into the silence.

“Could be. It's on the list but way down. You would be feeling ill by now.”

He ordered a slew of tests and asked me to come back in two weeks. Our two younger kids would be staying then. We only see them once a year as we live in Ontario and our daughter and family live in England; our son on Vancouver Island. So that week is special and I wanted it sunlit, not filled with foreboding and discussion.

There was no hurry, he assured me, so we made an appointment for the end of June. “If I see anything worrying, I will call you.” And he has.

Notes from my journal:

Not sure what it means, but felt very still and that it would be OK. When I asked God for guidance, I just got a calm “no need.”

The only important thing is to handle this with courage and grace.

Why? We are all part of a greater grace.

Tomorrow at 9.00.

 

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To Believe or not to Believe

Raising kids without religion – should we? We didn't take ours to church because we grew up in the shadow of Anglican sin. A hopeless starting point of failure. Tie that in with so much historical abuse and taking them to church was a tacit support of the system.

Our 6 year-old son summed it up one Boxing Day, when he announced he was an atheist. He was savvy enough to wait till after Christmas, just in case. “Our teacher says God is everywhere. I don't like going to the washroom with God.” Our daughter then explained her solution: “You tip the loo seat lid up against your back and He can't see down.”

It was Richard Dawkins who liberated me from servitude to sin, the burden of the crucifixion and the hopeless belief that whatever I did it could never be enough. But there was a flatness, not to mention anger, in his writings that repelled me. A missing patina; the rich tapestry of life lost in statistics and studies.

Bill Moyers interviewed both believing and atheist writers at a conference some years ago. What struck me most was the difference in affect between the two groups. The atheists, lucid and charming, were brittke like dried sticks; the religious had a peace and gentleness, with calm faces that looked freshly ironed.

When we, as I do, identify as spiritual rather than Christian (or similar), it's that peace we seek, whether through, yoga, meditation or walking in the woods. Losing that sense of a greater intelligence, a calmer being is a barren emptiness of the soul.

I don't think you can leave children spiritually rudderless in life – to choose when they grow up. They need the anchor of belief in something bigger than themselves. A touchstone for their journey through life – otherwise, what is the point on the hard days! Why do I get up each day and try to make something worth having out of pain and exhaustion?

To be honest, I do cheerfulness for Bill, but for real happiness, we need purpose, a story worth building life around. Norman Vincent Peale wrote about one of his parishioners who found God “and now she has a corset factory.” Not quite what I had in mind!

No, I don't believe in a higher power to get things, like the United Church minister who said it was fine to pray for a summer cottage. I believe in a greater soul and that every act of love, courage, honesty and compassion is building God by whatever name. And that is what, if I did it again, I would want to teach my kids.

 

http://www.huffingtonpost.ca/james-di-fiore/atheist-parenting_b_9772014.html

With or Without God by Gretta Vosper

 

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