It's Not About The Book

Ten minutes ago I finished reading a book. Five minutes ago I switched
on my computer and now I'm writing down the thoughts and feelings which
are pouring out of me at an accelerated rate - emotions and
realisations which I hadn't even known I possessed. The book is the
autobiographical account of Lance Armstrong's fight against testicular
cancer, his journey to triumph at the 1999 Tour de France sixteen
months after he walked out of the hospital, is entitled "It's not about
the bike" and is one of the most enlightening autobiographies I've ever
read. Not because it's written with any great sophistication, in fact
it was written with the collaboration of an established author, but
because it gave me an insight, I'd even go so far as to say an
overwhelming insight, into my own cancer story, in a way I never would
have believed was possible after so much time.

My own cancer story. Everyone has one. An aunt, a sister, a friend, a
colleague - cancer is the plague of the modern world and it can strike
anyone, anywhere at anytime.

And it struck my mother.

My mother died at 7.08 pm, on a Saturday. It was three days after her
sixtieth birthday during the week of the twin towers tragedy and she
had been battling lung cancer for almost three years. And it was a
battle. A battle she almost won. But in the end she simply wasn't
strong enough, or lucky enough and she slipped away from us late in the
day while the sun was going down and her children were watching over
her.

I'm at peace with much of that now. I won't deny it's been hard, but
there are things you say to help yourself through it. "She had a good
life" "it's the natural order of things" "She didn't suffer in the end"
and if you say them enough after a while they begin to sink in and you
stop feeling sorry for her and start feeling sorry for yourself.

You grieve then for what YOU'VE lost, what's missing from YOUR life and
it hurts. My God it hurts. But it's the only way.

I lost my mother, my advisor, my sanctuary, my safety net and the
grandmother of my children. The grandchildren who she will never meet
and who will never meet her. It's an incredible loss that deserves to
be acknowledged, needs to be recognised for the sake of my own sanity.
And a part of that has to be facing up to the guilt, the inevitable
guilt of a survivor.

It's actually quite a common symptom among people who have survived a
tragedy but is usually associated with a catastrophic event such as
September the eleventh or the survivors of the Holocaust. There's
probably even a medical term for it. The feeling that you didn't do
enough or were otherwise unworthy of the loved one. In many ways I felt
it too. Oh, on the surface I have nothing to feel guilty about; I left
my friends, my home, and my career, came to live with her and ran her
business so that she could continue living as she wanted. In the last
weeks I nursed her and by the time she died there was nothing
unresolved between us.

But I still have guilt. There are nagging memories of days when I was
so tired and worn out that I wasn't on the ball and missed little
things which should have been obvious and maybe that made her life just
that much harder. There are the memories of the terrible fear I lived
with every day that I would make a mistake and how, in the end, she
went to a hospice to die because she knew I felt relieved at the
lessening in responsibility, when all she wanted was to die in her own
bed. And then there's the confusion, the lack of understanding of what
was actually happening treatment wise, and symptoms wise. I didn't
speak cancer and I didn't really try to learn.

But mainly there's the guilt that she died. My mother died and no
matter how much it hurt, or how much I cried - I didn't.

You see as crazy as it sounds there is the feeling, the unarticulated
feeling that this was the worst, most terrible experience of a lifetime
and it didn't break me, when part of me thinks that it should have.

As if, somehow, I didn't love her enough.

Which is insane. I know that, my intellect screams the stupidity of it.
But the thing about being human is that mind and gut are often locked
in a battle of understanding. And this time gut won. I believed I had
failed her because I carried on laughing, working, planning and living.
Without her.

Time is really the only treatment for this. Time and filling your life
with other things? a husband, a family, a career - a purpose. None of
which I have at this time, but I'm working on it. No. Lance Armstrong's
story didn't give me the answers to that particular quandary, I doubt
if anyone's would. What it gave me was an understanding, even if only
in part, of what my cancer story was like for her.

The easy to read, frank descriptions of his treatment and his emotions
and his outlook answered many questions which I didn't know I had. I
remember an episode when my mother managed to get downstairs to the
office one morning. We lived in her residential home for the elderly;
she was a nurse and lived upstairs in a flat at the top of the
building. The home was vast and awkward, with narrow hallways and lots
of flights of stairs. There was a lift from the first to the second
floor but after that only the most mobile of our residents could
negotiate their way unaided and my mother lived right at the top. She
hadn't been downstairs in weeks. She had an oxygen machine with a long
line of tubes which covered the whole flat and partway down into the
house, but to go any further she had to make it without oxygen until
she was downstairs and hooked up to a freestanding oxygen canister.

She could barely breathe with the oxygen, never mind without it. It was
heartbreaking watching her take tentative steps, clinging to any
support she could find, gasping like a landed trout and she never made
the trip without stopping several times. I placed chairs at passable
points along the route and they were like goal posts to her. It could
take as much as an hour for her to negotiate the same distance I could
do in a minute and a half. And half of that would be without being able
to breathe.

No she hardly ever came downstairs. Not without a damn good reason
anyway - such as going to the hospital for treatment. So that morning I
was concerned to see her there. She stayed in the office all day.
Fussing about with paperwork and letters and I became quite frustrated
with her. She was in my way. I had pulled an 18 hour shift because our
staff had let us down and I was trying to run a business I was
unqualified to run at the same time. Every hour or so I asked her, with
increasing peevishness if she wanted to go back upstairs. She kept
saying no. I was completely baffled. Why had she come down in the first
place? She wasn't doing anything, why put herself through it? She
wouldn't talk to anyone although all the staff and the residents and
their families were eager to see her after so long. Finally at about 5
o'clock I asked her again and this time when she said no, there was a
kind of desperation to her voice. I realised quite suddenly what the
problem was.

"Mummy, is that you CAN'T get back upstairs?" I asked.

She began to cry. "No. I don't think I can."

I became a bustle of businesslike activity. This was something I could
do. We had wheelchairs of course in the home, so I fetched one, herded
her into it and took her up in the lift. Wheeled her as far as I could
along the passage way and then helped her up the many stairs to the
flat. It still took almost forty minutes but at last she was safe and
sound upstairs. I was very relieved, now I could get back to work.

That night, while I was bringing her supper she said, out of the
blue.

"It won't be long now"

I was shocked. She never spoke about dying. Never. We didn't discuss it
- her choice. She was too stubborn, too strong - she was going to beat
it she would tell me. Even when she couldn't stand the thought of any
more chemo she would go to sleep thinking she was done and wake up
saying that the sun was shinning and the birds were singing and she'd
decided to fight another day.

I didn't know what to say. I just sat there feeling inadequate.

I also, rather stupidly, didn't connect what she had said with what had
happened that day. She was tired, bone weary tired and I assumed it was
the exhaustion speaking. Now though I'm not so sure.

Lance Armstrong wrote of having a personal mantra. 'If you can move
you're not sick'. My mother was a nurse, she had treated terminally ill
patients and she knew what was coming. I think she took the journey
downstairs to find out something she needed to know. Struggling around
a small flat was one thing, but she wanted to move the goalposts. She
went down stairs to see if she could get back up and stayed all day in
the office because she wasn't ready to admit she couldn't. She knew it
was the beginning of the end.

She was dead within a month.

I'm not saying that anyone who can't get downstairs will die, only that
she knew herself too well. I believe that it was a personal test to
decide for herself if it was time to let go, before it got worse,
before the indignities of having her baby daughter bully her into
eating and washing and dressing got any worse. Before her daughter did
those things for her too.

The torture of chemotherapy burning her from the inside out, the utter
exhaustion which she lived with every second and the knowledge, the
terrifying knowledge of what was to come finally took its toll and my
mother's iron will gave out. Or she decided to let it.

Lance Armstrong's account has shown me a mere glimpse of what it was
like from her side of our cancer story and that little bit of
understanding has eased my own guilty conscience while breaking my
heart, quietly, one more time.