A Very Rare Cancer – And Living My Best Life

When I was in my early teens, my mother was diagnosed with cancer. At the time we didn’t know much about it and life seemed to go on even after she’d had major surgery. Then when I was nineteen, mum went for another check up and it was found that the cancer had returned and her body was completely riddled with it.

In two years we lost her due to a rare cancer that only 1% of the world’s population suffers from. I was grateful that she had made my 21^st birthday. 

The cancer was an inherited cancer and all of us, my two brothers, my sister and myself went for testing. They had the signs of it and all three went for preventative surgery. I was spared the surgery for four years.

After my surgery, life went on for me fairly much as normal. We had more political problems at home than health problems and eventually I moved across the other side of the country. I have tests every six months to make sure there’s no cancer and I’m happy to say that has been true so far. I have, however, lost both my brothers to the disease and my sister has had further surgery.

The city in which I live has a registry of familial cancers and through that registry I made contact with other patients with the same cancer. We all got together one year for a barbecue – actually it was two years – and had a great afternoon with each other. It was then I realized there were no support groups for anyone with our disease and I set up my Support page on Facebook.

Through this work, I got involved with the Cancer Council as a consumer advocate on some committees and eventually being a part of their Research Grants Committee. This was an eye opener and I enjoyed my time with them.

I still get my checks every six months – I wouldn’t dare miss them. I’m on a tablet that I call my anti-cancer drug but I’d rather be on that than have further surgery. That’s because I have a bonus side effect that only one of my brothers and I shared. I am susceptible to those nasty tumours that can happen from trauma and although it’s not cancerous, it can create limitations on what I do.

Within those limitations, I still enjoy a full life. I’m not as active as I used to be but I’m getting better with that. It’s a matter of pushing yourself to the point where you know you can’t go any further and then pushing that little bit further until you really can’t go any further. That’s usually when Alf (for Alien Life Form) throws a spanner in the works.

Yes, we gave my tumour a name. We did that because it gets hard to explain to someone that although you’re in pain they haven’t done anything to cause that pain. It was much easier to say “Alf did it!”

I have learned through the years that you cannot successfully tackle life without humour. If you can’t laugh at yourself, you’ll only end up crying and I’ve never been one for that. Life is hard enough – being angry or upset just makes things worse and there is no pleasure.

If I fall over, I’m the first one to laugh at myself. My partner and I went for a bike ride many years ago. I went ahead of him and around a corner and promptly came off the bike. By the time he reached me, I was laughing. Still lying on the footpath, still tangled in the bike. Laughing. It’s the only way to get through.

Feature Image Source – JamesAnn Photography

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Articles by Mala Rheston

Mala Rheston

I grew up in Melbourne, Victoria, Australia, in a family with two brothers and a sister. Although life has been hard with our family cancer issues, we have enjoyed what life has brought us. I live with my partner, Stu and his brother Simon and between us we have three cats, one cockateil and upteen fish, both pond and aquarium. I retired in January to do what I've always wanted to do – write. Stu and I had planned to go on the road this year but life has gotten in the way and it may be next year before we get there. But we will be on the road and I will add painting to my writing so that I can best describe our beautiful country.