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The cancer journey of a 'just so' girl

Personal stories

Issue 6, December 2010

Cheryl Bennett is a mother of three whose 'just so' life was turned upside down by a cancer diagnosis. Here, she tells her story.

My three sons went to a school where, in year 9 at the ripe old age of 14, they were sent to the bush for a five-month outdoor education camp called Glengarry.

Ben, now 23, was the first to go and on the day before he was to leave, I wrote him a letter.

I listed all his attributes, expressed how much I was going to miss him, made his bed so that it was just so and then after sealing the letter with a kiss, I left it on his pillow.

Needless to say when he got home and read the letter we found each other and lovingly said our goodbyes.

Two years later, Ryan prepared for the same excursion and I went about the same preparations.

Dealing with both parents having cancer and a grieving family was going to be tough.

The writing, the sealing, the bed making and the waiting.

To my delight, his response was almost identical to Ben's and I felt satisfied that I had found a way to connect with my sons on the eve of such an important event in their lives.

Another two years and son number three.

Another letter was written, the bed was made, the letter was kissed and placed but this time I waited. And I waited. And I waited.

In fact I waited until late that night when everything was done and the house was quiet.

I went up to Joel's room and noticed he was already in bed but there was no sign of the letter.

"Joel" I asked "did you get my letter?"

Then to my absolute surprise and in answer to my question, he quietly pulled the letter out from under the covers and handed it to me. I noticed it was still sealed with my kiss.

"Mum" he said, "can you please read it to me?"

Well, I tried, but it was hard. I was totally choked up with emotion and I could barely read the words let alone speak them. It was all but impossible.

You know, that story reminds me of moments in my cancer journey.

This past couple of years I have had some letters placed on my pillow too. Tests, scans, reports and results. Often delivered when I least expected them.

And just like Joel, I have not wanted to read them alone.

So I have pulled them out from under the covers and I've handed them to people like you, professors, doctors and support staff who have looked me in the eye, taken the results from me and then have had the courage to read them to me. It's a tough gig!

To everybody here, being there and making life easier for cancer patients and endeavouring to improve outcomes, is a noble calling. You are all - quite simply - amazing!

This is my cancer story.

I was 46, 76 kilos, a non-smoker and occasional drinker. I was working overtime in my husband's financial planning business and I was stressed.

I had three adult sons on the tail end of private schooling, we had a huge mortgage, I had forgotten about nutrition and I had not been to visit a doctor for six years.

I was beginning to have trouble digesting food and was getting a burning sensation in my abdomen when I was eating mandarins.

I was eventually sent for a scope.

The letter the doctor read to me a couple of days later said that I had a malignant tumour at the base of my oesophagus and I could see by his concern that it was not good.

I could not believe it. In fact, because were still recovering from my husband Steve's bad news. He had been diagnosed with leukaemia just six weeks prior.

The shock and despair within our circle of family and friends was overwhelming but we were most concerned about our boys.

Dealing with both parents having cancer and a grieving family was going to be tough.

But you just have to do what needs to be done and get it sorted as best you can.

Steve's leukaemia is being treated with one 'gleevec' tablet a day which means he now has no detectable sign of leukaemia in his blood.

But my treatment was a little more complicated.

My tumour was deemed operable and my surgeon conducted an Ivor Lewis oesophagectomy. He took two-thirds of my oesophagus, half of my stomach and then 10 days later, he went back in and took a suspicious ovary for good measure.

I thought that would be that. Cut the tumour out and move on.

And I thought that would be that. Cut the tumour out and move on.

The biopsy revealed that the cancer had spread to the lymph nodes, which was unexpected. Although my surgeon had already taken them he had to tell me I should have chemotherapy and radiotherapy down the track.

So after three weeks, I went home with a month to recover before the chemo was to begin.

And that's when my preoccupation with eating began. The surgery had left me with a tiny appetite and I had to get used to eating again. I literally had to eat all the time.

I expect every cancer has its own humiliation, but when you get cancer in your digestive tract, it is hard not to convince yourself that you caused it with something that you ate or drank or smoked.

I made a mental note of all the bad things I used to eat and drink and basically decided to stop eating and drinking them to make sure the cancer wouldn't come back.

I had decided to eat a fresh fruit and veg diet, with as much raw as I could take and fresh juice by the teaspoonful. But it was really hard work and I would choke and cough and dry retch in the process. I did attempt some occasional fattening fare like sustagen and cream cakes, but they made me feel ill and would tend to go in one end and out the other.

Weight fell off me and diarrhoea became my middle name.

And then the chemo...

Things basically went down hill from there.

The chemo program for gastro intestinal cancers is tough. You are basically wired up via a port-a-cath to a bottle of chemo which I carried in a bum bag and this infuses 24/7 and tends to also cause diarrhoea. You have to shower with it, sleep with it, do everything with it. It was horrible.

Then radiotherapy started, which I worried was going to burn the living daylights out of the rest of my oesophagus and stomach. How was I going to eat then?

While I was having a pity party, sulking and starving myself, my doctors faithfully continued to try and save my life. But it was becoming obvious to me that things were not right.

My oncologist was one step ahead of me. He sent me to the psychiatrist and I was put on an anti-depressant and that really helped.

In hindsight, I realise I really needed to get a grip. I look around at what is going on in third world countries and what is still going on in Haiti and the limited medical resources they have. When I remember that I was complaining about life saving surgery and treatment, I'm ashamed.

Around that time I also started going to meditation classes.

The teacher would often say, "You can live without food for about a month, you can live without water for about four days, but you can only live without your breath for not much more than a minute."

I liked that.

My preoccupation with food and surviving changed to a preoccupation with my breath and living in the moment. I started to focus on what I could do instead of worrying about what I couldn't do.

And instead of waking up worrying that I might die, I would breathe and celebrate that I was alive and then I would get up and get going!

The breath. Simple - but for me, a perspective restorer.

Then, eventually, all treatment stopped and I stopped complaining, thank God!

I started to see the good.

I ended up losing 22 kilos all up. How else was I going to do that? Now I am eating really well, still with my preferred fruit and veg bias, but a little more reasonably and with other additives that have helped me maintain my new weight.

I have only been able to regain about 1 to 2 kilos of that 22 kilo loss. However, I feel good in my new skin and I have come to love eating all the time. It is fun.

So yes, there has been good. And yes, there has been bad.

A place for everything

Before cancer, Steve would often refer to me as - the 'just so' girl - a place for everything and everything in its place. But when cancer treatment robbed me of that capability, things changed.

Late last year, my son Ryan phoned me out of the blue. "Mum," he said "I was just thinking."

Silence - whatever he was about to say was going to be difficult for him.

"I just wanted you to know - I think you are better since you had cancer."

My son's honesty hit me hard.

I knew exactly what he meant.

I read once that we all know we are going to die, but when you get cancer, you become aware of it.

When I was weak and incapable - and nothing was in its place. When I lost control and stopped being busy - and laid my head down on my son's lap. We connected with each other, like we never had before. He was right. I had become a better person.

So, earlier this year we decided to celebrate all things good at a family reunion in Hawaii.

But when we were away, there were some strange things going on that just didn't feel right.

So in March this year, more tests were done. And I waited and I waited and I waited.

And eventually my oncologist told me…

There were two malignant tumours in my liver. Secondaries. The cancer had come back.

When I first told my boys that I had cancer, I told them I would be fine and that was that.

But when it came back they knew what I had been through and could not believe that I had not done enough to be cured. They were devastated. We all were.

I want you to understand that I am under no false illusion that I am safe. Oesophageal cancer is deadly; I know that. But in my case - and I understand this is highly irregular - a scan revealed the tumours were in a position that made them operable.

When a professor of oncology calls you to say he has already made an appointment with your surgeon, even before you get home from the scan, you start to get a glimpse of the humanity of these amazing people, especially when we have a little win against the odds.

So my surgeon, my other best friend, took a quarter of my liver and my gall bladder in April this year.

Despite the surgery, the odds are still not great and I now realise I might die sooner than later. But I am still hoping it will be the reverse. I really want to live long enough to be a grandma but my sons don't seem to have the same passion for the pitter patter of little feet and I probably shouldn't rush them. Sometimes we can't have everything we want.

Knowing you might die is an interesting feeling. I read once that we all know we are going to die, but when you get cancer, you become aware of it. I think of it like a big blanket being wrapped around me. Some days I struggle really hard to shake it off.

I have talked to Steve about dying, but I had never talked to my sons about it. I didn't quite know how to and I didn't want to frighten or upset them. But kids know things and Joel knew exactly what to say. He suggested I go and see a movie, The Lovely Bones.

All he said was, "It's a bit scary Mum but you would like it."

As I'm a chicken, I chose to read the book instead.

For those of you that don't know, it's a story about a girl who is murdered. That is the scary part. But the part that he knew I would like was when the girl goes to heaven and becomes the narrator and beautifully describes the continuing connection she has with her family and friends that have been left behind on earth.

I did like it, I really liked it. And I knew what he was telling me. And it soothed my soul.

So where from here?

I really want to live long enough to be a grandma but my sons don't seem to have the same passion for the pitter patter of little feet and I probably shouldn't rush them.

Next week I have an appointment to see my oncologist. I will have another set of blood tests and another CT Scan.

I am on a bit of a mission actually. I have a bucket list.

There are 50 places in the world I want to see and so far I have only seen 17.

I have made a bit of a list of the things that I think have helped me get better. These may or may not be helpful for your patients.

1. Utilise all the support services available.
2. Take a couple of breaths and get everything in perspective.
3. Eat something, anything, as much as you can when you can.
4. Try to avoid stress at all costs. The only exception would be when in pursuit of tourist attractions!

And...

1. Get your things in order and work out what is really important to you in this life.

For me, it is my relationships - with Steve, with my boys and with our extended family and friends. That is what takes most of my time these days, and at the moment, I am totally content in that.

As we get older, and I'm all for getting older, our relationships with our children change. I think they become more the parent and we tend to become the child. When Ryan told me I had become better, when Joel directed me to that movie - they are things that a loving parent would say to a child but instead my sons are saying them to me. And then a couple of months ago, Ben became like a parent and wrote us a letter.

I'm not going to relay the whole thing - just a couple of excerpts.