By Lisa Machado
“I wonder who would clear out my underwear drawer if I died of a heart attack?” was a comment that came from a woman sitting in the back row. We had been talking about what has become one of the hottest stories in CML – whether or not TKI medications make a serious cardiac event like a heart attack or stroke more likely.
It was March 28th, and the Canadian CML Network was hosting an educational event in Ottawa. Attendance was great, more than double what we expected. And not unlike the conversations that happen at any CML meeting anywhere in the world, three themes became clear: people want to know and understand more about their disease, no matter how long they have had CML; the people who care for them need more access to support; and although CML is generally well-managed with medication (and that we are very thankful for), people worry about the long-term implications of TKI therapy, which has some thinking about, well, the state of their underwear drawer.
The question reminded me of a story that a friend of mine told me when she was diagnosed with a rare brain tumour years ago. She said that the same day she got the diagnosis she bought new underwear, folded them neatly and put them in her drawer. “So that the new wife didn’t think I was messy and had bad undies, “ she said.
Sounds kind of odd, but if you have ever faced the potential end to your life, the idea of making sure everything is in order, even if it’s your underwear, is not that crazy. It’s a feeling that people living with cancer know all too well. Living with uncertainty is hard.
“Seriously though,” the woman at the back said as the people around her laughed, “how can we know for sure that the medications that are keeping us alive now won’t end up killing us later?”
Well, we don’t really know for sure.
The same thoughts were echoed a few weeks earlier at Gilda’s Club in Barrie, Ontario. I had the honour of speaking to the Living with Chronic Cancer group about my thoughts on what it takes to move forward after cancer. To say that courage and strength was palpable in the room that night is an understatement. Many were in treatment for gastric cancer, colon cancer and melanoma. One young man had had his stomach removed years earlier, only to have the cancer return to the soft tissue around his intestines. Yet there he was, standing, smiling, joking around. Another young woman had CML, but because of what doctors think was an allergic reaction to medication, she suffered a collapsed trachea and now struggles to breathe. She is another amazing human being who continues to smile despite the crazy obstacles that continue to challenge her.
They come to Gilda’s Club to share and to meet others who understand the pain and fear of cancer. Just like those who gather for our CML meetings, they come for hope, support and maybe a laugh or two. But there’s something else.
It hums quietly in the background. It’s in the frustrated tears that fall when someone talks about the loss of their “old” life. It’s in the long hugs that happen when it’s time to go home. And it’s in the feeling of exhilaration when someone listens to your story, and then says, “I felt that way too.”
I am talking about recovery and healing. And if you think that hearing other people share their experiences and empathize with yours helps you move forward, you wouldn’t be wrong. In fact, this is exactly why support groups are so powerful. But what is brilliantly disguised is your role in the recovery and healing of others. Just by showing up, you are making a big difference.
So as we get ready to host this year’s Living Well with CML 2018 conference in Toronto on May 26th, I am looking forward to yet another magical day of healing and recovery. The medical sessions will include a Q & A with Dr. Jeff Lipton from Toronto’s Princess Margaret Cancer Centre, and a presentation by Dr. Darryl Leong, a cardiologist from McMaster University in Hamilton, about cardiac risk while taking TKI medications. Other sessions will look at the connection between nutrition and sleep, energy and digestion, and how to really live after a cancer diagnosis. A new feature this year will be separate breakout sessions for people with CML and caregivers on how to manage relationships while living with cancer.
We will also be kicking off the conference with the Evening of the Extraordinary on May 25th, when the CML Network will be recognizing the Extraordinary in CML. Do you know someone who has made a difference in your CML life? We want to hear from you. Dr. Jeff Lipton will also be on hand to receive the 2018 Brian Druker Honorary Award for Extraordinary Care in CML. Email me at firstname.lastname@example.org to find out about travel assistance.
I hope you show up.
Visit cmlnetwork.ca for information on how to RSVP to the Evening of the Extraordinary and Living Well with CML 2018 and to nominate your Extraordinary someone.