Friday, February 10, 2006

An Unwanted Journey: Day 0078 - Blogging Cancer


“Word of mouth on steroids” is a phrase created by Yossi Vardi, the father of one of the creators of ICQ, to describe the Internet. In fact, it’s a chapter title in Robert Scoble’s and Shel Israel’s recent book Naked Conversations where the referent is blogging itself.

Blogging is about conversation or story-telling. If there is anything more naked than conversations or stories about battling cancer, then I don’t know what it might be. My personal battle is, I hope, a story of triumph, a conversation with myself and those who care to offer their own thoughts and comments. But its impact depends on volunteering. I must volunteer to expose myself honestly and sometimes brutally in the face of a life-threatening illness. And the reader must volunteer to be engaged. Cancer itself is involuntary.

By blogging on this theme, I hope that others who are fighting cancer will find information and comfort in what I write. I hope they will be better prepared when they face similar treatment. Those who have heard a doctor say, “I’m sorry to tell you this, but your tumour is malignant” will have plenty of motivation to read and learn. Their voluntary involvement with my story will seem very natural to them.

But what about those who are not directly affected by cancer? How can I get them to volunteer themselves to this word-of-mouth activity?

This is tricky business. I know from my own experience BC (before cancer) that I didn’t want to read stories about cancer. Maybe it was because I was too superficial and self-absorbed. Maybe it was simply because the threat seemed so remote.

Or, maybe it was because I was too fearful. Certainly, there were too many friends and relatives who died of cancer. My grandfather and my father-in-law both died of cancer and were of a generation that preferred not to hear the word at all. And so we protected them from the word. Our generation hears the word regularly. We are less reticent to use the word in conversation. But I have to wonder if we’ve made much progress in being less fearful.

It’s a catch-22 situation. Until and unless we are willing to engage our fear, we will be reluctant to talk about cancer directly, even if we use the word regularly. But unless we hear and tell the stories, we will never face our fear.

And so, I must ask readers who are not battling cancer to fight their fears, to ask questions, to expose themselves and their worries, to read as if they too had the same diagnosis, to pass the word along to others. A big request, I know. But if this is to be a true conversation, it will work best if it includes those who don’t have cancer.

7 comments:

Katherine said...

So true. Thanks. You are opening up a whole new world for me. I am exploring feelings and thoughts about life that I wouldn't have (at least not at this point in my life), had it not been for your blog.

Grateful.

Kath

Bint Alshamsa said...

Hello Don,

I, like you, have cancer. Unlike you, I've been dealing with it for a few years now because my bone cancer is considered incurable. I'm so very glad that you have decided to use this medium to express your feelings about the journey you are not making. If you ever want to talk to someone who has dealt with some of the same issues (e.g. surgery, chemo, radiation, depression, anger, etc.) then feel free to come and say hello on my blog.

I wish you pain control, contentedness, and all the love your heart can handle!

Sincerely,
bint alshamsa

Don Spencer said...

Hi, Katherine.

Marg and I were just commenting yesterday about how grateful we are for the additional contact with friends and family we've had since my diagnosis of cancer. I, too, have felt like whole new worlds are opening as I begin extended conversations with old friends, new friends, family members I don't see too often (even though we now live closer to each other ;>) ), and acquaintances around the globe.

You are an inspiration to me with your enthusiasm for learning, for delving deep into self-improvement and relationships, and for your commitment to your family. Keep it up, Kath.

Love,

Don

Katie Delahaye Paine said...

Funny how things happen. I just started my own blog (kdpaine.blogs.com/survivorblog )about battling breast cancer and I found this through the Shel Israel connection. I just found out that a good friend lost her battle on Friday. She was an amazing inspiration. When I was still bald and recovering from chemo, she came up to me and said "I'm about to lose my hair for the 8th time." That was a year and a half ago, and up until very recently, she'd be at every one of her daughter's concerts, could always be seen walking around town putting up posters for some benefit or other, and really living to the very very end. I still think cancer is a gift. It teaches you so much about life. Thanks for doing this.

Don Spencer said...

Katie, thanks for visiting and commenting. I've done the same and left a comment on your first post in the blogosphere. Looking forward to reading many more from you in the future.

Cheers,

Don

Steve Holmes said...
This comment has been removed by a blog administrator.
Steve Holmes said...

I'm not going to trivialise this by trying to offer hope because I know, believe me, what it feels like when you hear that big clock strike the worst time you ever imagined could come.

There is something about receiving that death sentence that changes your life for ever and in your mind you start making deals with whatever you believe in to give you the miracle of continued life.

I admire Lance A. and his website but there is a problem here, which is what about the people who aren't going to be the heroic survivor, what about the people who through no fault of their own are not going to make it.

Many years ago, as a cancer survivor, I joined a voluntary group who used to visit and telephone people who had recently been told they had cancer (and their relatives sometimes.

I was allowed to say what I liked, which I probably wouldn't be today, and what I said was basically that you have to hold several realities at once from now on and to juggle them:

1) you have cancer and it'll kill you if you don't take it seriously and act now; it may kill you anyway

2) it isn't your fault, no matter what those murderously cruel alternative therapy types tell you about how in holistic medicine it is your personality that made you a cancer victim; it isn't your fault if you can't do this; they have to walk in your shows before they can judge you

3) you will will want to blame someone or something but you don't have time for that and you never will; the only way out of here is to move on as a fighter; if you live to be 100, finding an ultimate cause won't ever help you

4) it's OK if you fail; don't beat yourself up if things take a turn for the worse; putting pressure on your mind only adds to your agony


5) you may feel terrible emotions like despair and rage and you may suffer horrible treatments that steal away your will to live and cause you appalling pain; you have to keep walking, keep on going, one hour at a time, maybe one minute at a time if it gets that bad; you are brave and you can do this; do not waste what remains of your life putting on a brave face and trying to cheer up your hospital visitors

6) other people are afraid of what is happening to you because they imagine it happening to them; it is not your job to deal with that fear; you may lose some friends who were not friends at all; you may find some new friends and people who seem like angels may come into you life to help you

7) peace will come; pain reduces over time; calm eventually overcomes despair; you can do yourself a massive favour if you reach out towards peace, even in your vale of tears

8) do not be afraid of your emotion; do not let anyone embarrass you into pretending to feel better than you do; cancer will change you and if you surrender in that process you will find really good things in yourself like courage and wisdom, kindness, compassion and hope - believe me, this can be true if you let waht is great within you grow to greater strength

9) you may die - chose now that if it happens you will die with dignity and with your life's stories resolved; you do not want to die in agony and regret, believe me

10) you need some good luck; there is amazing power in submitting to fate sometimes


.........That's the kind of stuff I used to say. I hope it resonates with someone. I had to quit cancer counselling when I realised I could guess who would live and who would die. My guess seemed like a death sentence and I couldn't do it any more.

I have had two massive cancers that were treated by radiotherapy when I was aged 17 and 21. I am 57 next week. I survived secondary cancer in both lungs. I'm not bragging, just proving that I know what I say. Because I pray that my words will help anybody at all who has heard that big clock strike their mortality.


I believe in the power of truth and I have a free public service website where anyone can discuss their trials in life and how they came through anything at www.wecope.net