Somebody get me out of here!
Reflections on the experience of being diagnosed with cancer

by Nola

"Somebody get me out of here!"

Lying in the CT scan machine, feeling incredibly claustrophobic, I gave way to panic as the experiences of the last two hours overwhelmed me.

A disembodied voice came through the speaker, "Don’t move. The scans will be ruined."

Whatever my reply was - I don’t remember - it certainly had an effect. Suddenly, the disembodied voices were replaced by real people as they magically appeared in my limited field of vision. To my enormous relief, they pulled me out of the machine before I completely lost the last vestiges of self-control.

The last straw, after twenty minutes of verbal bullying, was someone, anonymous and invisible, coming into the room, restraining one of my arms, which were awkwardly crossed above my head as I lay prone in the "doughnut" and preparing to inject me with something.

This was an outrage, a violation of my rights over my body. It was the final trigger for my outburst, which was a desperate attempt to clutch back some kind of control over my destiny. In one morning, I had gone from being a happily married 35 year old professional and mother with a 15 month old baby to cancer patient with the grimmest of diagnoses.

A couple of hours previously, I had been told by a doctor that the "harmless lump" recently removed from my vulva after a nine-month delay, was the most aggressive example of a rare form of sarcoma they’d ever seen - vulval haemangio sarcoma. There were no survivors of this form of cancer.

The platform on which one lies moves inexorably into the "doughnut" of the CT machine and one has the feeling of being an object on a conveyor belt being processed like a piece of meat. It was a degrading experience.

For a split-second, I remembered how I’d always imagined that some disaster like this would eventually overtake me and that now it had finally happened, I should submit and be prepared to die obediently without causing a fuss.

I’m glad to say that some long-dormant lifeforce welled up in me and rebelled with the internal force of a volcano against this pessimistic voice. It made me assertive in a way I’d never been before.

I cried for the first time and told the medical staff that they couldn’t do anything else until they told me what they were doing and why. Then I would give permission.

The technicians and doctor starting looking me in the eye and calling me by my name. I felt that I’d clutched back a measure of control over my body and my destiny and was willing to proceed, but a profound change had taken place in me.

This new assertiveness was the foundation stone upon which I built my strategies for dealing with the disease that threatened my life. This was my body and if I was going to die, I was going to go down fighting and die well and with dignity. If there was any chance of surviving, then I promised myself I would leave no stone unturned in my search for things which would enhance my chances of surviving and improve the quality of my life. I owed this much to myself and to my family.

 I desperately wanted to turn 40, to be a mother to my son as he grew up, to live a full life and die peacefully in old age. My life’s direction had changed and I began a new kind of journey.

Along the way, I have found that there is a lot of valuable support for cancer patients and their families but you have to go looking for it. I believe passionately in the importance of self-help and self-determination for cancer patients. I believe the relationship with doctors should be that of a partnership, where both sides do everything possible to enhance the well-being and quality of life of the cancer patient (and the doctor!). It is the patient’s body and mind that will, in the end, win or lose the battle against the invading cancer cells.

There are many resources to help in the fight. Complementary therapies such as meditation, relaxation, creative visualisation, counselling, art/dance/music therapy, and activities such as appropriate exercise, reading, vitamins, massage and so on, can all be of value. Calling these things "complementary" rather than "alternative" is important because this approach means we take the best of all that western medicine can give us but we are not limited by it in our search for better health and quality of life.

To get back to my story…

Soon after diagnosis, I had surgery: a right vulvectomy and removal of all the lymph nodes in my right leg. A frozen section during surgery showed that the local tissue and lymph were free of cancer, so no further surgery was necessary. Two out of three possible avenues of spread were clear. The cancer could still spread through my bloodstream so from then on it was up to me and my immune system.

I know now that I got cancer as a result of an unhappy and overwhelming combination of circumstances to do with a difficult pregnancy and post-natal depression. We have had to come to terms with many major losses including not having any more children.

Nonetheless, we have made many gains as a result of having cancer. As a family, we have made lifestyle changes to ensure that stress and conflict are minimised and that we have the happiest life possible.

My cancer experience has given me the wherewithal to get decisive control over my long-term depressive illness. We’ve found that laughter, enjoyment and contentment are VERY good for the immune system and invaluable tools for cancer survival. Suspense movies are definitely off the agenda - romantic comedies are on!! I’m learning to embrace every day and live the fullest, richest life possible and now I wouldn’t have it any other way!

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