Sunday, September 21, 2008

Journeying through Illness and Health

Betrayed – by my Body

This has been a long winter
A “things often went wrong” winter
A “you must be strong” winter
One I’d care not to repeat
(Connie Kaldor, Love is a Truck)

My body betrayed me this past winter. I was angry and frustrated – but most of all I was scared. I came home tired from holidays with a pain in my leg that limited my walking, stopped me from doing tai chi, and left me looking at flights of stairs with trepidation and fear. And I was so, so, so tired. My blood pressure soared, and my head ached unbearably day and night.

I worked hard to get better. I took time off work, and my family delivered groceries and ran errands for me. The doctor told me I was anemic, and I became an iron fanatic – I knew the iron content of every food I ate. I knew stress was part of my problem so I quit my job and found another one. I found out I had arthritis in my back; physiotherapy helped. I took extra holidays over Christmas and got lots of rest.

I was back at work; I was only moderately anemic; and I tried very hard to be positive and optimistic. I even booked a holiday in Vancouver. But my problems weren’t over yet as I started to bleed. I saw a gynaecologist who was optimistic and gave me hormonal pills that he said would help until I reached menopause. But I spent my first day in Vancouver in Emergency because I was bleeding so heavily and I was scared it would never stop. I came home from Vancouver late at night, got hit hard by a bout of stomach flu or food poisoning – and got a phone call from the gynaecologist. Biopsy results showed that I had endometrial cancer. I was scheduled for a complete hysterectomy less than three weeks later.

Never Say Die

Fisher boats rock in the harbour
Blow, hear the winds blow
Clouds are hovering low in the sky
The weather is turning this morning
Blow, hear the winds blow
They say that trouble is brewing
Blow, hear the winds blow
We look at each other with questioning eyes
Where do we turn to this morning
Blow, hear the winds blow
Hear the winds blow
(Alan Reid, Battlefield Band, Dookin’)

I coped with my fear of dying and my fear of surgery (my first ever major surgery) by throwing myself into a whirlwind of activity. I made a will. I stocked up on enough groceries to last me for months and months. I bought a new nightgown and dressing gown. I was still jolted wide awake at night by fear and disbelief, but during the day I was eminently practical.

A hysterectomy is major surgery, and I would certainly not recommend it as anything but a last resort. Your muscles and nerves are cut, and you can’t lift anything heavier than a cup of tea or a book for six weeks. They’ve messed around in your insides so your bladder and intestines don’t function properly. And there can be complications. I bled after the surgery and had extremely heavy bruising. As a result, the wound didn’t heal properly, and I had massive discharge every couple of days. A trip to Emergency 10 days after surgery finally identified the problem, and daily nurses’ visits for the next two and a half weeks ensured that the wound healed properly. But it was very frightening.

Recovery was slow because of the various complications. But I persevered. I would walk from living room to dining room to bedroom, circling the house for five minutes at a time three times a day. I drank Ensure when I couldn’t force down the food my body urgently needed. In the middle of the night, when fears are always strongest, I would silently sing songs of hope and courage – “When you walk through a storm, hold your head up high . . .”; “I am I Don Quixote, the Lord of La Mancha, my destiny calls and I go . . . .”

Family and friends were wonderful. I had get well greetings and gifts from around the world. My sister in law took me in and looked after me until I was well enough to live on my own again. It made a huge difference to know that people cared. But in the end you have to do it on your own. You just keep going, one step at a time.

Taking Responsibility for my own Medical Care

I knew that something was the matter when I was ill before my surgery. Friends were convinced it was just stress and burn out. I think my doctor thought so too. And that was certainly part of the problem. But it wasn’t the whole story. I was fortunate – my doctors didn’t give up on me and they did work out what was wrong. But another time I will work much harder to outline very clearly for them my symptoms as unemotionally as possible. Doctors are only human – you have to work with them to identify significant symptoms and to ask questions so that they probe deeper if the original diagnosis doesn’t seem to fit.

After surgery it was even more important for me to take charge of my own follow up. Nobody else was going to. I was shuffled from one doctor to the next. I ended up doing my own research and deciding not to have radiation treatment immediately but to wait and have it if/when I had a recurrence. I am making sure that I have regular checkups to make sure that the cancer doesn’t recur. And I’ve done enough research to know what to look out for.

Setting Yourself Free

If you did, if you did, even if you did
Been where you shouldn’t have been
Seen what you shouldn’t have seen
Dreamed what you shouldn’t have dreamed
That doesn’t mean you have to be paying the price forever
I’m going to set you free
(John Spillane, played by Battlefield Band, Dookin’)

On the other hand, you can’t spend your whole time fixating on illness and bodily functions. I am very glad that I took a month-long holiday in England and France. I was doing something positive; I was having fun; and I was learning that I could cope again in all sorts of different circumstances.

But there’s no turning back the clock. I was sitting beside the river yesterday enjoying the golden autumn sunshine and listening to the Canada geese as they noisily bustled about getting set for a long flight south. My happiness was so intense and so complete. I definitely appreciate life more since I got cancer. And I realized that my enjoyment is so much greater because I am so very aware that life is short and that I have no idea what the future holds or how long I will be alive.

I can’t let fear paralyze me, but I can use it to help me set priorities, to do the things that really matter. Now. And so I plan to travel lots, to read good books and listen to great music, to spend time with the people I love. I’ll balance work with play and I’ll look after my body as best I can.

And I’ll try and set myself free to celebrate life – every minute of every day.

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