Lisa Machado is the founder of the Canadian CML Network (cmlnetwork.ca), a national patient support organization based in Toronto, Ontario, Canada. She has been living with chronic myeloid leukemia since 2008. She can be reached at email@example.com.
It's time to start paying attention to what comes after cancer treatment.
In July, Newsweek magazine published an article on the impact that cancer has on intimacy. It was an insightful commentary on the struggles faced by people whose cancer treatments have left them with marked physical changes, such as the loss of a breast because of breast cancer, or the inability to have an erection because of testicular cancer. And while living to tell the tale is, of course, what anyone diagnosed with this unforgiving disease hopes for, it’s hard to bask in the glow of survival when your sexual identity is in pieces and your intimate relationships are on the brink of collapse.
But it’s not just those whose cancer journey can be traced by physical scars who struggle. People whose treatments have left their bodies intact also grapple with redefining their sexuality, an internal struggle made that much more difficult for others to identify and understand simply because of the absence of tangible clues of illness.
“But you don’t look sick,” is one of the most common things said to people living with chronic myelogenous leukemia (CML), a rare blood cancer, and perhaps the most annoying — take a moment to read through the posts on our Facebook page if you don’t believe me. This comment usually comes from a good place, and yes, we are so, so grateful to have treatments that keep us alive and looking “well.” At the same time, it can lead to feelings of isolation and depression when your outside doesn’t match your inside.
And if your health care team is telling you that things are good and you are in the clear, families and loved ones move on — crisis averted – eager for things to get back to normal. After all, if you look well and the doctor says you are well, then it must be so. The thing is, the patient often lags behind, dealing with medication side effects like fatigue and nausea and trying to juggle a mixed bag of conflicting emotions like relief that the treatment is working, feeling grateful to be alive but fearing an uncertain future, and grief over the loss of their “old” life. Because let’s be clear, no matter what the prognosis, a cancer diagnosis changes everything.
It’s not hard to understand then, when the bedrooms of cancer survivors are not the steamy, passionate love nests of the past. Or is it? Not when you are the one trying to keep it together, for sure. But to the person on the outside, it can be very hard to understand why someone who, on paper, has every reason to be on top of the world, is now, as one spouse put it during one of our CML meetings, “an uninspired, non-passionate, boring person in bed.”
It could possibly be one of the biggest, most devastating oversights (besides a misdiagnosis) that can happen in the treatment of people who have had cancer, or are living with it — a lack of psychosocial support aimed at helping to rebuild and reinvent post-cancer lives.
Doctors are really good at having the scientific conversation, talking medication and side effects, explaining x-rays and procedures and comparing outcomes. But ask about depression, anxiety and grief relating to your cancer, and many don’t have the time, or the words to respond in ways that soothe the internal turmoil. Ask about sex drive (if you dare), and well, conversation often becomes limp.
Sure, not all the fault lies with healthcare teams. Talking about sex and intimacy is difficult at the best of times. When your only goal is staying alive, sex drops down the list of priority topics when you see your oncologist. And, when things settle, and you sit across from your doctor hearing about how awesome your numbers/scans/bloods look, erections, vaginal dryness, and loss of libido just don’t seem to fit into the conversation. But they should, especially in these follow-up appointments, when the this-journey-is-about-done-and-it’s-time-to-get-back-to-your-life conversation happens. After all, this is the person who has seen you through from the devastation of diagnosis to a conclusion that you can live with. Surely, they have some insights on how you can get your mojo back, and enjoy this gift of life you have been given.
Or at least put you in touch with someone who can.
When I was diagnosed with CML, my oncologist delivered the news in the calm, direct way that only a true expert can. He told me about the disease, the treatment, and what I could expect in terms of side effects. The one thing he didn’t tell me was that, despite an amazing prognosis, living with cancer would change my life forever, in ways that I had not even thought of.
“A heads-up would have been nice,” says a friend who has just finished the last series of radiation treatments for a second go-round with colon cancer. She was well-versed in the seriousness of her cancer and the worst-case scenario, but no one ever talked about the mental, emotional and sexual impact. The reverberations of which will be felt for years to come. So, I have an idea. How about widening the diagnosis/treatment/prognosis conversation to include the other side effects of having cancer — anxiety, depression, fear, loss of libido. Let’s give people with cancer a “heads-up” about how much their life is about to change and then get them the tools to cope and overcome by hooking them up with solid psychosocial support.
The Newsweek story says that, “at least 60 per cent of cancer survivors experience long-term sexual problems, with less than 20 per cent getting the help they need.” Those are pretty crazy numbers. Substitute sexual problems with emotional issues, and I bet that 60 hits the high nineties.
It’s time to honor the science and research that is helping more and more people survive cancer by recognizing that for many, the journey does not end with remission, or a clear scan. In fact, it’s the what-comes-after that often can be the most life-affecting part of having cancer. So, let’s start talking about it. Don’t we all deserve that?