What’s the Story?

Last week I met with my oncologist for the first time. A very kind Doctor, I liked him very much.

The first conversation we had was quite memorable for me because instead of telling me all about chemotherapy as I expected him to, he asked me what I understood about my situation so far. Once I got over the initial surprise of being asked to articulate that, I was happy to tell that story.

I am now 2 months on from finding that lump and one month on from my surgery. I feel well, I eat and sleep well, I am able to get out for walks and see friends. I often feel very happy. That was not the story that was relevant to the oncologist of course. That is a story about tumours and clear margins, and lymph nodes, and scans of my lungs, bones and my brain.

But the main story was a story about numbers. What is my statistical prognosis based on the individual factors that impact on my predicted survival. Various factors are entered into a mathematical model which then predicts 5 year and 10 year survival for breast cancer after surgery.

Your risk is calculated by the answers to the following data, your age, whether the cancer was detected by screening or by symptoms, the size of the tumour, the grade of the cancer, the number of positive nodes. Finally, the positive or negative receptor status of the cancer cells are entered.

By pressing the predict tab you are then given a percentage prognosis with chemotherapy and without. These appear as a bar chart. It’s incredible to see your future expressed in such simple terms. You live or you die.

I have a 70% chance of living beyond 5 years with chemotherapy, and that reduces to 58% without it. There was never really a question of not having it. The triple negative status of my cancer means that I can’t benefit from hormone therapy. So part of my story will be about chemotherapy.

The next part of the appointment was spent talking about the practical arrangements and the potential side effects. I will be getting FEC-T chemotherapy which is an acronym for 4 different drugs. The drugs will be administered intravenously and will take about 2 hours. I was shown the suite where I will be a regular guest over the next 6 months. I will get 6 cycles and each cycle occurs over a 3 week period. I am not expecting to enjoy this part of the cancer experience, but I need to commit to it and endure it because it is my best chance of surviving.

I have a set of postcards on my kitchen wall. There are probably trite but I like them. One states that it’s not about the happy ending, it’s about the story.

I am building up plenty of material for my story, that seems to be coming along quite nicely! But what about my ending? It seems impossibly cruel to me to imagine that I might not live beyond the next 5 years. But 30% of people in my situation won’t, so why not me? I wasn’t statistically likely to have developed cancer to begin with but…surprise!

There is no meaning in these statistics, but some comfort perhaps. There is plenty of meaning for me in my life, a husband I love and 2 boys, two beautiful and young boys who need me. I have always regarded myself as their story teller. I made their baby books. And every summer I made a collage poster of the best photos from our family holiday. I took most of the pictures. I was trying to tell our family story in images. A reminder of where we were and what we did together. This was important to me because my family split up when I was six. Our togetherness is my greatest achievement.

I still have to get some key results from my various scans to see if the cancer has spread to my organs. I also need to find out if I have the breast cancer gene. If I do then the best chance I have for my survival is a double mastectomy and the removal of my ovaries.

I cut my hair this week. I felt no emotion about that whatsoever. Perhaps I will when it falls out. I also had an amusing visit to my local supplier of wigs. I am pretty ambivalent about this. But my boys were very clear that they did not want me to get my hair cut or wear a head scarf. They have never known me with short hair and so they are beginning to get used to it now, before they have to get used to me with no hair. We are all going to have to learn to handle new and challenging situations.

I have learned to cope with the uncertainty of life. I may have to learn to cope with a shorter life than I might have hoped for. But the most important thing I have learned is to value each day, every day. I have learned to find the good in each day, to hope for more without expecting it and to be truly thankful.

Everything has to end. But I am not ready for that to happen. I don’t know what my ending will be. I don’t know if I will win. But I know I am going to fight. I have been very reluctant to describe my experience of cancer as a battle, but I am beginning to feel that this next phase is going to be just that, and I am as ready for that as I think I can be.

I am scared, but I am also hopeful. I am worried that chemo will strangle that hope with its horror list of torture symptoms. I have to remember what I told my boys, these side effects are caused by the treatment not the cancer. This will be temporary and will pass. And looking back at my life I will remember this terrible time and reflect upon all the things I learned.

I learned to love my life. I will fight hard to keep it.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s