The Start of the Journey

Contents

1    Cancer? Ho Hum

2.    Community of Survivors

3.    I will Not Die

4.    The Courage to Live

5.    Do you Have the Courage?

6.    Everyone Knows a Cancer Survivor

7.    Regaining my Perspective

8.    And

9.    For My own Sake

10.              Colorectal Surgery Unit

11.                      Alfred Hospital    -   August 2001

11.    Beating Cancer

12.    Errors of Judgement

13.    I’ll be here

14.    You’re telling Me

15.    No Title

16.    Hold Me

17.    I’m all right, You’re all right

18.    ‘Living with Cancer’

19.    On not looking behind

20.    Touch me

21.    One day

22.    Do they know?

23.    A Wish for Tomorrow

24.    Now

25.    Not a Pretty Poem

26.    Suddenly

27.    Today I Live

28.    Catching up

29.    Love Life

30.    Good Cells from Bad

31.    And we’ve lost so many

32.    What I Must Do

33.    Never Again

34.    Weary

35.    Winning

36.    Chemo

37.    Anorexia

38.    Not

39.    On this day

Picking up the Threads - 6 months on

Musings from Further Down the Track

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The Start of the Journey

In July 2001 I found myself in hospital having middle-of-the-night emergency surgery for cancer. When a surgeon stands by your bed saying, very seriously  'Beryl, I have to tell you, I can't guarantee you'll come off the operating table alive' that is one of  life's defining moments.

I knew this was not the generic 'no surgery is without risks' statement but the truth about my very immediate predicament, because I could feel my body shutting down, already beginning to die inch by painful inch.

The next morning I woke, amazed at being without pain at last, thanks to modern medicine. I'm allergic to morphine so they'd found a cocktail of drugs to kill my pain, without killing me.

The doctor was smiling this time, delivering a new message 'I think we got it all'.

Unfortunately, a week later it was a different story. When a doctor begins a sentence with 'Sorry' you know it's not good news - and it wasn't this time. During the eighteen months I had been unsuccessfully searching for a  diagnosis, the cancer had gone from Stage 1 to Stage 3 of only 4 stages.

That was the beginning of my learning what an up and down ride cancer is. Later that day an oncologist sat by my bed for an hour, filling me in on some facts and figures - the 'What this means is' that we have to learn so we can confront cancer, the beast.

I call it the beast because for most of us, it jumps out from its hiding place like a lion or some other flesh eating animal, with little or no warning.

The oncologist was outstanding, filling me in fully on my chances if I didn't have chemo therapy, which weren't too great, and an assessment of the difference such treatment could make. Then he didn't rush me for an answer but allowed me all the time I needed to think about it.

Handed the choice, a reasonably strong chance of life against the probability of death, I decided to start down a road I'd have ideally preferred to avoid, agreeing to chemotherapy. At least this was finally a choice I could make for myself. Such a gift.

After a fortnight in hospital and another month of convalescence at home, I began the chemo; that treatment that leaves the best of us wondering how we'll cope, physically and emotionally. That first day of walking into William Buckland House, the cancer treatment centre at The Alfred Hospital, realising that every person there was someone with cancer, or at least a supporter close to them, I wanted to turn and run. But you can't if you want your best chance of keeping on living. And I knew why I was taking that chance. I still had things I wanted to do.

Still, a couple of months down the track I felt myself unable to summon the emotional strength I knew I was going to need if I wanted my best chance of surviving. Loaded down with the weakness and other unpleasant symptoms of the chemotherapy, trying to just put one foot in front of the other, those months were feeling like years. Especially so as I had to largely 'go it alone' with all my adult children living thousands of kilometres away.

I will always be grateful to my sons and daughters, my sister and a very good friend who took it in turns to travel those long distances, flying in for the 5 days in each month when I needed someone to drive me to the hospital and home again. The medication left me unable to drive myself. I was floating in a 'sea of despond'.

Then the light went on. I worked out what it was blocking the emotional strength I usually had in abundance. I was unable to shake the vivid memory of the eighteen months I'd spent traipsing from doctor to doctor, test to test without a diagnosis, leading up to that fateful night of my close brush with death. Without a diagnosis all hope of a choice had been taken from me. And I was  stuck in grief for what could have been, what should have been if that diagnosis had been made earlier. It was my anger at those doctors that was keeping me at a stand still.

With that sudden realisation came the knowledge that I knew how to confront this dilemma.

I'd worked my way through years of helping others - and myself - move forward confidently after major life trauma, writing books for adults and children who'd gone through divorce, widowhood, single parenthood and helping them face to face. Learning how writing down emotions is a very good way of coming to terms with them. Putting them on paper also puts them outside yourself. And what's outside can be dealt with.

All those friends who knew me as an author and public speaker were, of course, asking if I was going to write a book about my cancer experience as well. But, as those of you on the same journey as mine will appreciate, I didn't want to revisit all that pain, weakness, confusion, leading up to the night that wonderful surgeon saved my life.

So this new journey began. A journey of recording what was happening day to day. First for myself. Chronicling how I felt, what I was experiencing. Then later for others, as I began to hear of their pain, their hard won ways of learning to navigate this journey through the sludge of cancer. If I heard of a friend with cancer, knew they may be faltering, it sometimes seemed fitting to write something to send to them, saying 'I'm thinking of you' and reminding them they were strong and courageous. Sharing with them the stories that were being written on all our bodies, our hearts. Appreciating it deep in my heart when they'd tell me 'Thank you so much Beryl. It was just what I needed at that time'.

Yet even then I didn't know it was a book I was writing. Just a putting one foot in front of the other and sometimes sharing that with one person at a time.

We live in the silences between our words, the stillness between our actions.

In this book, now I understand it was meant for others as well, I share with you my feelings within those silences, the emotional responses to knowing this cancer could have killed me. Grateful for the miraculously skilled surgeon who saved my life and patched my body together again.

Walk with me as I traverse those initial moments of revelation, days and months of sharing the pain of others on the same journey, through to the end of my six months of chemotherapy treatment.

The joy I felt at making it through that difficult time was positively powerful.

You who’ve shared such a journey know that the end of the most obvious treatments is not the end of the story for people who’ve pushed back cancer.

We all respond to the ongoing journey differently – and differently on different days – yet in many ways the same.

The roller coaster we're riding speeds on. Better days. Worse days. Days when you could scream at people for saying the wrong thing. Hopeless. Hopeful.

I’ve shown the dates on each page when I was inspired to write. See for yourself my ups and downs, the bursts of emotional energy, the blank days or weeks between. My appreciation of those who loved me enough to help me in many different ways through this dark time.

I offer you this roadmap. Perhaps following my journey will help you with yours.

It re-inspires me to share with you the day to day experience of my very personal journey as I confronted the physical and mental difficulties of cancer - and some joys of discovery - learning to stretch myself again beyond the feelings hemming me in. Beginning on that blessed day I picked up my pen and started to again take back my power to overcome. Working through the next six months, by myself and alongside others up to the last day of chemotherapy. What an exuberantly happy day.

Along with these words I offer you my love, my hopes for your future, whatever stage of your journey you are passing through, whoever you are, the cared for or the carer.

Because in the end, love and understanding are really all that matters.

Beryl