Ok, so I knew I wanted to spend time with my family and friends, I wanted to drive this magnificent country of ours again, and I wanted to leave something behind that was positive and inspiring for my children and grandchildren. And what could be more lasting, positive and inspiring than the collected tales of everyday people who had wonderful stories to share. I would travel, publish a book and a blog and hold fundraising events for local charities along the way. These became the key activities for my Parfait Party.
As I progressed with treatment, I also couldn’t help thinking about my last few months with my Mum before she passed away with Cancer. I try to be a positive person and focus on living rather than dying, but the reality of this disease is that it is going to catch me; and sooner than I would like.
When Mum was ill, she tried to give herself some closure. She wanted each of us to chose and earmark things that were special to us. With the best in intentions, we didn’t make choices. I guess we didn’t want to accept and we didn’t want her to acknowledge her imminent death, well I know I didn’t. It was like if we helped her in that task, we had given up on her.
Now that I’m in the same position myself, I realise that we should have talked about it with her, should have helped her finalise the things that were important to her. But how do you say to a loved one, ‘Yep, you’re done for. Let’s sort these things out shall we?”
My son, the eternal optimist took the same attitude as when I had primary breast cancer six years ago “You’ll beat it Mum, you are so strong, you WILL be in the 2%. I love you and will help you in any way I can,” he said. I love and need his energy and positivity, and he sounded exactly how I was when Mum was ill.
My daughter took a more pragmatic approach and immediately hit the research. She too, wanted to beleive I would be in the 2% of long term survivors but she also wanted to know what we could expect as the thing progressed. One day she mentioned to me that there was not a lot of public information on end-END stage breast cancer.
“I don’t want to be negative,” she said, “but I have some questions about progression“, squirming as she asked as if the word itself might cause me to implode.
Why am I sharing all this?
Well, no topics have been taboo in our family, we talk about everything. This end stage cancer thing however made our close and honest family feel like strangers stuck together in a life boat without oars.
But wait! One in two people are effected by cancer now, with many of these people having quality or length of life rudely interupted. Many more live with different chronic diseases with the same or similar impact. Is half the world trapped in a life boat with their loved ones unsure of how to proceed?
I knew then that in addition to leaving a postive, inspiring legacy with the Parfait Party stories and fundraising for charity, there was something else I could do; talk about my story.
Candid. Warts and all. Uncomfortable. Depressing. Joyous. Boring.
Yep, I really do have to bear my A____ for the world if I am going to be real.
Oh did I mention that I am usually very private person and hate letting anyone know what is really going on with me. This should be a challenge!