JUNE 2004

REST YOUR WEARY HEAD
AND LET YOUR HEART DECIDE

When I write a paper for the website, it always feels like the hardest piece I've had to write. I've found some things are difficult to express in words and that certain experiences and memories are hard to share with people.

With this piece I knew what I NEEDED to say, but I realised it wasn't what I WANTED to say.......

On the 16th February I finished the long trawl of radiotherapy. And everyone seemed so hopeful. Every step we had taken seemed to have worked. I was 'on my way up'. I was given a chance to have my life back for a bit; an opportunity to live those months of 'Normality' I had asked for. I was on the edge of the highest diving board, ready to plunge back into my 'Life'. All I had to do was let go.

I was privileged to two days rest after treatment finished before I was called back into London for a scan of my abdomen. A routine scan; to check my insides were still MY insides and had not been invaded by another cancerous life form. Hedgehog, limpet or
otherwise.

The results seemed to come back faster than usual, and of course it was back to London to hear what the scans were showing. They seemed to want to deal with my case incredibly quickly! Why such urgency for me to see the Consultant?

As I heard the words leave the Consultant's mouth and hit my brain, all the emotions I'd been waiting to feel again in 'Normality' fell to the floor and shattered at my feet. I was dragged back, kicking and screaming from the edge of that diving board. My
disease was not going to give me a chance to feel 'Normality' just yet.

My cancer had started to progress. It had to at some point; everything evolves.

Why? Why did it HAVE to progress? What was I meant to think? What was I meant to be feeling? I couldn't feel anything. I was numb......

I had let myself get carried away with this idea that the operation had been 'The Miracle' we had been searching for. That I had finally been 'cured'. The Consultant herself had said that it was a 'possible cure'. I believed the Surgeon when he'd said that the operation could 'buy' me 18 months. But in a part of myself I always knew that no-one could promise me a single day. However the Dreamer inside me was willing to live the dream. A dream or a lie?

The Doctors were determined not to give up on me now.... But they had no master-plan. There was nothing left to massacre the disease. All that was left in the ammunition case was more chemo. Chemo! I knew that piercing word - I had heard it somewhere before.

The Consultant laid three options down in front of me. She slowly talked through each option with me and made sure that I understood all of their consequences. She wanted to make sure that I knew all the facts before I went away to try and make a decision. When I had made the decision back in September, to take the 'no treatment' route, I had been naive. I hadn't
prepared myself for time that came between now and then.

So.... the options offered:

a) A course of radical, palliative (meaning 'not a cure') IV chemotherapy.
b) A course of palliative, oral chemotherapy.
c) No treatment.

And their consequences:

a) It's not a cure; it's dragging out your life for a few more months - putting off the inevitable. It would be an attempt to reduce the speed of the tumours growth. Not a strong enough drug to kill off the disease. There would be the sickness and the further
breakdown of the immune system. And of course, all the rehydration in local hospital after each treatment. I'd be an inpatient in hospital, in London - away from family, friends and familiar places.

The chemo had NEVER worked in my history, so why would it now? To be locked away from all the people who mean so much to me - is that what I really want in the last few months of my life? I think we've been here before?

b) It's not a cure; it's a way of making the patient feel they're doing something positive in taking a form of treatment and not just sitting at home, waiting for the old Grim Reaper. It has all the side-effects of IV chemo but at a lower level. The one thing that
makes it slightly beneficial is that it can be taken at home . It's meant to let you continue with your everyday 'life'. Unfortunately you won't receive a refund if you find you're not able to get out of bed in the morning or you're head is stuck down the loo from all the sickness.

It's for the sort of person who believes that a treatment = a cure. It sounds like a complete joke to me! Is it worth the bother of those damn side-effects?

c) A chance of 'Normality' for a little longer. The pain and other symptoms would increase as the tumour continues to progress. These symptoms would have to be controlled as they arise.

The easy option? No! The hardest option to take and to think about taking. If I went this way I would have to be totally convinced and convincing that this really was the life I was ready to live for the following months.

In September, when I made my first decision, it was made on a gut feeling and on instinct. I knew what I wanted and I went with my feelings. Now I wished that instinct or a gut feeling would help me out with this decision. The only 'gut feeling' I was experiencing was my lunch wanting to see sunshine again and the grinding sensation of fear.

One day I decided to take the IV chemo and be done with it - It was a decision and I was happy to go with it. But the next day I changed my mind and chose the oral chemo. Then a game of 'chemo ping-pong' began. Each day brought a different choice.
I bounced between wanting oral or IV chemo. Every now and then, one of them would feel a more reasonable option than the other. I tried to avoid the last option, option 'c'. I thought that if I blanked it, it might disappear off the list. The more I tired to
forget it, the bolder it stuck out in my mind.

Each day I wasted trying to decide, drew me closer to the day on which I would have to voice my decision. Before I knew where I was; I was back at the hospital to tell the Consultant what I wanted. Another meeting in another room. I have so much respect for my Consultant. Over the few years I've known her, I've had to sit in front of her too many times, in such desperate times. She's got to be the strongest and bravest women in her
profession. She?s not been able to save every life but hero?s don't always succeed.

It had finally dawned on me what I truly wanted to do when I was on the phone to my closest buddy. Someone who knew me well, someone who could make sense of my thoughts. Talking with them that night reminded me why I had chosen complete independence at the start. And in that one moment I realised that I still wanted the things that came with it all; 'Normality' and 'Life'. It might be a painful and short existence from then on but I wanted it and this time I wasn't going to let anything stop me. So Option C it was going to be!

I'm not going to give in to this bastard disease now! Unlike last time when I had the energy and determination to ?run up to it and slap it in the face? this time I'm turning my back and saying that I'll deal with it when I am ready to.

It's actually happening. All those times when I knew I was going to die, they were real but somehow something came a long and made my life a little longer. But now, there is nothing to stop what's happening. No operation or other treatment that will help me. I am now on the straight road, no hills, no ruts or lay-bys anymore. No more talking or thinking about it - it's happening. But remember, I was given a month or so to live, and that was eight months ago! There is always hope!

At the end to every child's story there lies a 'Happy Ending'; that famous line we heard so many times in our childhood ?And they all lived happily ever after.?.

Stop right there!

Does that mean those fairy tale characters lived on 'forever'? Or did the Prince and Princess grow old together and eventually have to be parted by old age, by the 'decay of time'?

I want THIS story to come to an end but I want MY story to carry on. I want the 'happily every after' ending. A perfect ending. But we don't get to choose the endings of our life's story.

Vicki

Written: June 2004