YOU ARE NOT ALONE
I’ve never liked science fiction movies. But it seems the phrase “we are not alone” is relevant in the real world. I came to think about this phrase when diagnosed with secondary breast cancer.
My name is Kay O’Sullivan and I was diagnosed with primary BC in 2000 just before Cathy Freeman won her gold medal.I was 43 years old. 2 years later, the pain in my hip turned out to be secondary breast cancer and so my next journey began. I was told this news one minute before going into the operating theatre for a second mastectomy. Yikes!
5 years on, I’ve shared my body with ABC – like termites in my hips, spine, skull & liver.
I am a member of the Tuesday group and I believe this support group is contributing to my positive well being in 3 ways.
Primary breast cancer was a walk in the park for me compared to the enormity of advanced.
It took me 18 months to find this group.
I meet a member of the group Gayle, at a function at the Wesley, she gave me the phone number, I put it on the fridge, but I didn’t need it THEN. I did nothing about it.
Then months later, a nurse in the oncology ward who was with a student nurse, was being very thorough with asking ALL the questions on the sheet, and asked if I knew about a support group. I said no and so she gave me the brochure. Timing is everything in life because I needed it THEN.
I handled primary pretty well but I eventually became overwhelmed with secondary. Bad news after bad news just got too much. I was at breaking point.
I had questions – how do I live with this? How long am going to live? What can and can’t I do? What sport can I play safely? Who would you ask to get the answer those questions?
There was no precedent. I had no role models and the media never reported any stories about women with advanced BC. I felt I was left on my own to “handle” it the best I could.
Only the women in this group knew exactly what I was feeling and could help.
<b>Knowledge</b> – of the day to day stuff. Oncologists try to fix the cancer yet I am esponsible for my own wellbeing. We exchange information with each other.
We have the experience of seeing women come and go in the group. Yes, sometimes it’s very sad when they die, but we are privileged to share their journey and can talk about the most personal issues. As somebody in the group once said, we are lucky because we get the amber light. A chance to prepare for death and say our goodbyes. Where else can we talk about dieing so honestly?
We do laugh more than cry and a kick-arse attitude helps.
We also get strength from each other which allow us to ask questions of our doctors. We become empowered with information eg one person has no problems with a drug, whereas somebody else has bad side effects. We then know we can ask for alternatives. We feel a little bit more in control of our lives.
<b>Rural Women’s Situation</b>
I’ve also learnt of the difficulties for regional and rural women. We are so lucky in the Brisbane. Can you imagine only having 1 oncologist to go to? Can you also imagine how isolated they are? We can go to out to coffee shops and have a whinge and a cry with girlfriends on our bad days. Rural women can’t. Their psychosocial needs can’t be met as easily. It makes you think twice.
So in conclusion, it’s exciting to be a part of the only support group for women with ABC in Australia using tele-conferencing facilities, to our knowledge. Now, to have our website this may reach out to more women for an online support group.
I believe that the benefits of a support group , sharing the psychological aspects of this life limiting disease, the exchange of knowledge & laughter with city, regional & rural women, fair outweigh the disadvantages because no matter what happens – “you are not alone”.