Rhodes, New South Wales
Ten years ago, Evelyn (now 62) was diagnosed with a rare and aggressive form of cancer. She survived the cancer, but lives with the effects of treatment everyday. Evelyn is married to Andrew, and they have two grown children, Stephanie and Matt.
My unexpected diagnosis
In May 2006 I found myself exhausted. I was working hard and organising two fetes, one at my daughter Stephanie’s school and another at my son Matt’s. I felt terrible, but I ignored it. I thought it was just stress.
I had a constant headache, as well as an ache in my mouth and problems with my vision. Even my teeth hurt. I saw my dentist, and she thought stress was causing me to grind my teeth. She made a plate for me. I also saw an optometrist. He found nothing wrong with my eyes, and no reason for the headaches. Again, I blamed stress.
In July, my son was in a school skiing competition. We flew to Cooma to cheer him on. I had my first nosebleed the night before, and then palpitations on the flight (even though it was such a short flight). The trip was also a surprise for my husband, Andrew. We were going to celebrate his 50th birthday. But while we were there I had four nosebleeds in four days. It wasn’t much of a celebration. I saw my GP as soon as I arrived home. She thought I had polyps, and arranged for me to see an Ear-Nose-Throat (ENT) specialist.
I had to wait until August for an appointment. I had more than 30 nosebleeds in the four weeks I waited. As soon as he saw me the ENT ordered a CT scan. It showed a tumour in my sinus that extended under my right eye and the side of my nose.
Single cell neuroendocrine carcinoma, they call it. Cancer, for short. It is a rare type of cancer normally found in the lungs. For me to have it in my sinuses was unexpected.
I was sent to a cancer specialist. He told me the cancer could spread and break into my brain, and that I needed to prepare for what was to come. He gave me a 70 per cent chance of survival, if it didn’t reach my brain.
The immediate impact on my family
Andrew and I decided decided to wait before we told our children. We wanted to have something more definitive to tell. And so we told them my nosebleeds and headaches were due to grinding my teeth. But the children knew something was wrong… Andrew and I were walking around like zombies.
I had to give up work immediately – I was getting nosebleeds all the time. I had been so active, so involved… and it all had to end.
My daughter, Stephanie, was in her final year of school at the time. My health and mood was affecting her. She sat the first of her final oral exams in September, and we told both children afterwards.
My diagnosis effected my children differently. My daughter became strong. We had a matching set of crystals that we rubbed – she in her exams and me during chemo. It was a way for us to support each other. My son worried. He took the diagnosis hard, as his friend’s mother had died of breast cancer and he thought I would die too.
Andrew and I had been married for eighteen years. My diagnosis was hard for him. He was an only child, and both his parents were still alive. He had never known illness or death. Together, we decided that the cancer couldn’t beat us. We decided to beat it. That was the way we took control of my health, and of our lives, again.
Enduring chemotherapy and radiation
I started chemotherapy and radiation the day Stephanie started her final written exams.
Before treatment began, the doctors encouraged me to have any dental work I needed done. Chemotherapy ruins your teeth and mouth. I followed this advice, and I am glad I did. My dentist advised me to drink any Grange or Moet that I had access to, as my tastebuds would never be the same again.
I had 33 radiation treatments in the first month. The radiation ran alongside the chemotherapy, which started in October and continued until January 2007. They hit me hard. During those first weeks, I sat through chemotherapy in the morning and radiation in the afternoon.
My sister, who runs a hospice, came to stay with us for a few days and helped Andrew and the kids learn what to do. She helped them feel important, feel part of my treatment and my support team.
But it was hard. My mouth and throat were in so much pain I had to gargle liquid anaesthetic before eating my blended food just to swallow. I feel so sorry for people with throat cancer… I endured what the treatment did to me, but what they experience must be even worse.
I had a great support network. The ladies at my Quilting Group shaved my head before I lost my hair. And people from everywhere kept me company, bringing me food and flowers. To be honest, sometimes the hardest part was the flowers. Because of the radiation, I couldn’t handle the scent. Even today, nine years later, I can’t bear the scent of perfume.
I can’t praise enough the support I received during treatment; it was fantastic for Andrew and I. It helped us cope. A group of mums took turns taking me to and from treatment. And one friend, Sue, actually started to work from my home, and organised different people to be with me when she wasn’t there.
But looking back, having different help everyday wasn’t the best choice for the kids. I later found out that Steph and Matt found finding a different person in their home everyday destabilising. It made them feel like it was no longer their home.
Stephanie’s school days were over. She had no classes, but she spent her days at the State Library as home wasn’t a good place to study for her final exams. That meant she had no support network around her for much of the time. Still, Stephanie was able to claim misadventure, which helped her final marks.
In retrospect, I know would have been better off getting a nurse – one person to always be there. I feel I should have known that is what my kids needed, but the offers of help – physical and emotional – seemed the perfect solution at the time.
Andrew and I are so proud of both our children. Of how they coped, and of the adults they have become.
The consequences of treatment
My mother died of cancer the year I married. I never appreciated what she went through until I went through it.
Unlike my mother, I survived. I am cancer free, and – because of the cancer I had – it is unlikely to come back. But the long term side effects of the treatment continue.
The treatment left me with internal scarring, which required follow up operations to have my nose scraped to let me breath.
And the radiation destroyed my tastebuds. I can’t drink coffee or red wine anymore, or go near chilli or spices – if I do my mouth breaks out in ulcers.
My hair and eyelashes grew back, but my eyelashes grew inward. I had to have them permanently removed. The radiation effected my eye, damaging the retina and the optic nerve. I went blind in my right eye slowly over the first two years. I no longer had any side vision. I can still drive, but I choose not to for long distances.
My hearing was also affected. The Eustachian tube in my right ear was scarred. I now have a grommet in that ear, and I need ear plugs in the other when flying. Flying can be uncomfortable, and this limits my ability to travel. We did go to Italy for a month a few years ago, but I am unlikely to go overseas again.
The specialists don’t know what causes the cancer I had, but they don’t think it is genetic. I am grateful for that – I don’t want my children getting it. I think stress was a trigger, whatever the cause of this cancer the degree of stress I was under at the time pushed me over the edge.
What I want you to know
I received all the support I could have asked for during my treatment. But in reality, the hardest part has come after the treatment. Post-cancer life is hard. I live with the side effects, and they are debilitating.
People look at me and think I am alright; they think I am better. People don’t talk about the cancer anymore, and my support network dropped away as soon as my treatment finished.
I am one of the lucky ones. I got though it. But the side effects have changed my life.
The evils of the treatment… They stay with me.
They say it takes twenty years for the radiation to leave your body… It makes me think of what happened in Japan.
I used to be super-active. I am not anymore. I take things slower. If I don’t get something done, I don’t get down. I tell my family to do it themselves!
But if I get a headache, it plays on my mind. What if the cancer comes back?
I’ve chosen not to return to work. But it is important for me to stay engaged, to be doing something. I keep my mind active by quilting, mostly for charities. I try not to make the same thing twice, always using a different pattern or combination of colours.
Cancer is a scary thing. It can make or break a family. Cancer made our family. Two years ago my sister-in-law passed away from ovarian cancer. And so I know, my family knows, that not everyone’s cancer story ends as well as mine.
I don’t take anything for granted. And I can’t be prouder of my husband and kids.