Tuesday, 1 July 2014

9. How Owl got cancer

My humble Owl has been waiting patiently in the wings of this blog, clutching a stack of stories. He kept being upstaged by more pressing matters. Test results, funerals, that kind of thing.

Time to start telling you Owl’s story. He has, after all, been the inspiration for this blog.

For the first story, let me take you three months back in time.

The day after telling my children that I had cancer, I promised my older daughter that we would definitely buy that overlock sewing machine we’d both been coveting, because I was going to spend a lot more time at home in the coming months.

It will help me, I thought, to sit in my own little world making clothes and owls, letting my mind wander a little but never too far: sewing requires a gentle focus and constant important decisions about fabrics and stitch length.

Some of Owl's ancestors

 “You should make owls with cancer!” my older daughter exclaimed.

Cancer?

“Yes, you put a little piece of cancer inside them.”

“Hm,” I said, “I was actually thinking of giving the owls away, and I’m not sure people would want to be given an owl with cancer.”

“I know!” my younger daughter joined in. “You take the cancer out again. Like an operation.” (The day before, I had explained to them that the surgeon will have to cut away my cancerous lump).

“Yeah,” said my older daughter, warming to the theme. “Like an operation. Then you can have an owl with a scar.”

I could see where this was coming from, and I could see where it was going.

My daughters each have their alter ego, their life’s companion, a toy animal that is no longer just a stuffed toy but a fully-fledged member of the Tuffrey family. They live, learn, experience, experiment, express their emotions through Bear and Pig.

Bear and Pig
(must have been a formal occasion)

It seemed they were suggesting that I needed just such a companion.

“It will be therapeutic, mum, if you give him cancer,” my older daughter said.

I had just been contemplating that the one truly unhelpful thing people could do is to give me advice (“You should go and have counselling”. “You should go private so you don’t have to wait for a scan.” “You should stay positive.”)

There was nothing anyone could suggest that I hadn’t already considered myself, and dismissed for good reasons. (Staying positive? Ah, good idea, hadn’t thought of that one. Thank you very much indeed.)

But I made an exception for my daughter. Her suggestion was so startling, I would never have thought of it myself. Sitting down to rig up a quick owl at the weekend, I thought: well, why not? It’s their idea, it may help them.

Having stuffed my newly stitched owl, I took a small rough piece of stone and buried it deep inside his fluff.

And suddenly, unexpectedly, I wept and wept all over my lovely owl.




Poor Owl! I thought. He looks so nice, he seems fine, but he isn’t, he’s got cancer.

And at the same time: Darling daughter, you’re a genius. You were right. Giving my owl cancer is therapeutic.

I dried my eyes and took the almost-finished owl to the girls.

If it helps me, I thought, it’ll help them.

“Here you are,” I said. “Here’s my new owl, but he’s got cancer.”

“Has he?!” They were both excited.

“Yes,” I said, “and someone needs to take it out.”

My younger daughter was ready, prodding him all over: “I can’t feel it!”

“No,” I said, “you can’t. Quite often you can't feel cancer. It’s inside. You’ll have to stick your hand in.”

So she did, with gusto, and I joked: “I hope that my surgeon will wash her hands before she operates on me!” They both laughed, haha, yes, of course.


My younger daughter quickly found it, took it out, held it aloft: “Look! Cancer! Yuk.” My older daughter wanted to have a good look too.

Then they debated what to do with it. (They had asked me this too, the day before: "What will you do with the cancer when they take it out? Will you have a look at it?")

They decided to throw it out after all.  Cancer is not something you keep on the mantelpiece.

I asked whether all the other owls I was going to make should also have cancer, and my daughters decided that they shouldn’t, after all. It didn’t feel right to have lots of cancerous owls. And also, they both agreed, cancer isn’t infectious. It’s not an epidemic. This was one of the first things my younger daughter had asked the day before, when I told her that I have cancer: “Will I get it now?” and I had explained this.

Later, after I’d done the final stitching, I tossed Owl to my younger daughter.  “Here you are, a cured Owl.”

She started to make Yippydoodah noises, but my older daughter interrupted: “No he’s not, not yet! He needs radiotherapy.” (At the time, before I was hit by the mastectomy-and-chemotherapy bombshell, lumpectomy-and-radiotherapy was the plan for my own treatment, and I had told them this.)

It was at this point that I began to see Owl’s potential as an educator and a conduit for expressing emotion.

My younger daughter was game, “Oh yes, radiotherapy, yes.”

Copyrighted image: BooksBeyondWords


Out came GettingOn With Cancer from the Books Beyond Words series.

(Having co-written it myself to help people with intellectual disabilities understand what happens when you have cancer, I’d never imagined that one day it would help my own children understand what was happening to me.)

I found the radiotherapy section: “Look, this is the radiotherapy machine.”







As we are short of pretend radiotherapy machines in the toy cupboard, my younger daughter thought carefully about an alternative. She fetched her Lego-man-shaped torch and shone it on Owl, twisting Owl around. We had a good laugh when I said: “Well, I hope that when I have my radiotherapy, it’ll be the radiotherapy machine turning around me, not me turning like a hog roast.”

What this has achieved, I quickly realised, was what I was hoping to achieve but didn’t quite know how to.

Owl has turned cancer into an ordinary topic of conversation, something you can talk about, ask about and laugh about (and hopefully cry about) without fear or worry.

Without there having to be ‘the right time’.

That’s how I need it to be, because that is how I always talk with my children. Having a hospice nurse for a mum means that in our household, death and dying are dinner table conversation topics. Cancer should be, too.

(The children’s resulting no-nonsense attitude and vocabulary does, admittedly, sometimes startle people. When I was in Holland looking after my dying mother, a neighbour in London rang the doorbell, asking my younger daughter: “Is you mother in?” “No,” my daughter replied. “When will she be back?” the neighbour asked. He wasn't quite prepared for this answer: “She’ll come back once my grandmother is dead and had her funeral.” The poor mystified neighbour scuttled away and had to return later in the evening, only to get this story confirmed by my husband.)

So I’ve made up my mind that Owl will accompany me on this unexpected journey.

He will help my younger daughter understand why I am tired. (After being blasted by Lego-man, we laid him down for a few seconds, as she could see in the picture book that you need a rest after radiotherapy. She could also see that Owl, like the woman in the pictures, wasn’t done yet: he had to have more radiotherapy, and more, and lost his appetite, before being fine again.)

Would I be brave enough, I wondered, to ask if I could take Owl into the MRI scanning room and take his picture?

“Of course you are,” said the friend who accompanied me to the scan.

And of course I was. In fact when I took him in to see the radiographer and told her Owl’s story, she loved the idea so much that she offered to write him his very own MRI scan certificate. I didn’t have to tell the story twice: it spread quickly through the scanning department.

No, I couldn’t take his picture because my iPhone wouldn’t survive the strong magnetic field in the scanning room. But they could take it for me, through the door opening.




Afterwards, I was contemplating all this with my friend over a cup of strong tea.

Having an MRI scan is highly alarming. You have to lie still for half an hour whilst the machine makes such loud noises that they give you earplugs. You are all alone, spoken to via a loudspeaker, knowing they couldn’t hear you even if you screamed. I was fine. Decades of practice in meditation and mindfulness has its benefits, but it was also unexpectedly comforting to have Owl at my side.

It helped me, because the MRI scan suddenly turned me into a real patient, and I wasn't quite ready for it. Taking off my clothes and donning a hospital gown was almost symbolic. 

I tried desperately to cling on to my capable, in-control identity. But talking to my friend about Bear and Pig, I had a sudden flash of insight. When I explained to her how these alter egos express the aspects of their owners that they cannot express themselves, I suddenly thought… That’s why it’s not just the children who need Owl.

I need him too, because he is the part of me that is a Helpless Patient.

I need to give him a place on my journey.

And in case you are wondering: yes, we did buy the overlock machine. It's wonderful. I am heading upstairs now, to sew myself a mastectomy-friendly top.


9 comments:

  1. Dear Irene!


























    Dear Irene! You write amazing! This is a script for your new book :-) And a book for children , when Owl gets cancer! All the best to you

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    1. Thank you Stine! Ah well, a book... who knows, there may come a day when I feel well again and able to deal with reviewers and publishers. For now, writing this uncensored blog keeps me sane!

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  2. My Owl (which, you'll remember, is your Owl's big sister) has been very worried about Owl. She's so glad that the mastectomy is done, and will be praying for you and sending you loving thoughts throughout your treatment.
    And I thought my Owl was a boy until I went to write this!

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    1. My Owl is a boy, it seems. Which is a bit of a challenge when it comes to having a mastectomy... he had to have his breast wing amputated instead!

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  3. Hello Irene - I think my post didn't work, so I'll have another go. Thank you so much for the blog - I'm remembering your diaries from South Africa all those years ago.

    I just found a lovely photo of me and your mum having tea on the sofa (no doubt before or after a game of Rummikub); also a photo of you and Pogle. My scanner's in London, but I'll try and scan them into one of the guy's computers here and email them to you - if we can work out how to do it!
    Lots of love, Graham xxx

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    1. Got the photos. Thank you! Goodness, you and mum look so young...

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  4. Irene,

    As i read through these.. slowly, picking individual dates to read, i see my story, and my sisters story and understand so much that i couldnt understand before - about how i feel.
    Thank you for sharing with us.
    When i had my first screening MRI last year - I sat and watched the patients in the waiting room, exactly as you did - but feeling guilty that I do not have cancer. and i nearly dissolved thinking about how my Dad felt when he had his MRI scans during his treatment.
    Being a "patient", and being patient. yes. very much so.

    xx
    Take care

    Sue

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    1. Ah, yes, the "How to be patient" blog. I wrote it from my perspective as a patient, but of course you are right, it probably also resonates with the relatives and friends who wait with them.
      It hadn't occurred to me that my blog might help other cancer patients' family and friends, but I'm glad!

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