After experiencing cancer, people often say they have changed – they appreciate the small things in life and are more “in the moment” than before. But many are also physically changed – minus a breast from a mastectomy, for example, or having neck scars from thyroid cancer surgery. Obvious markers like these can be psychologically devastating. Coping with them is a testament to the human spirit and to the power of family, friendships and community.
No one knows more about this than Tracy Coulter, a 36-year-old Calgarian who is recovering from oral cancer. Coulter suspected the worst when she visited her physician in the fall of 2010 with a mouth sore. Her fears were realized and, the following February, she had surgery to remove 90 per cent of her tongue and to rebuild a new one with skin, an artery and vein from her left leg. Doctors removed her lower teeth and extracted some lymph nodes. Six weeks of radiation followed and another surgery in January 2012 to make the new tongue larger.
The recovery – two years and counting – is daunting. The acute damage from surgery and radiation meant she couldn’t talk, swallow or eat at first. Today, she’s speaking, eating puréed foods (in addition to nutrients from a feeding tube) and swallowing on her own.
“I still have trouble with words like ‘cat’ because I don’t have the muscles to make those k sounds anymore,” explains Coulter. “And I’m trying to speak more slowly so people can understand me. But I’m from Newfoundland and I have never spoken slowly in my life.” Coulter also talks to Daisy, her beloved seven-year-old English bulldog and cuddle companion, practising the sounds she struggles with.
And Coulter can’t wait for the day when she can chew a steak. But there are more surgeries – one is reconstructive and three involve dental implants – scheduled for this year. “One day,” Coulter says, “I am going to get my life back and I am glad to say that I’ve never given up on doing just that.”
She admits feeling sad, mad and frustrated with the length of her recovery. And she’s self-conscious; her face looks different, particularly from the lips down to the neck. “For a long time I didn’t like to look at myself in the mirror,” she says. “But I am OK now with the person looking back at me.”
Dr. Guy Pelletier, a clinical psychologist with the Tom Baker Cancer Centre in Calgary, is very familiar with what Coulter is experiencing. He says the common trauma of physical changes interferes with quality of life and social interaction. Damage to salivary glands can dry up saliva, making it hard to eat. Chewing can be difficult and patients may be reluctant to eat in public for fear of choking or looking messy.
Pelletier says coping begins early, when patients discuss all possible physical repercussions with health-care professionals before treatment. After surgery, he advises patients to start rehab early and do as much as possible. Anxiousness and depressed feelings are normal, he says, but the goal should be to accept a new reality. “No one is happy with cancer and its aftermath,” he says, “but many will arrive at the possibility of making peace with the fact that their bodies have changed.” Pelletier advises patients to seek professional help at any time in the process, saying that 38 per cent of people impacted by cancer benefit from the services of a counsellor – twice the rate of the general public.
Calgarian Brenda Reid, a 56-year-old yoga instructor and children’s choir volunteer, chose not to pursue professional help and also bypassed reconstructive surgery following a mastectomy in December 2009. “It never really entered my mind,” she says. “I am not my breasts.”
Nevertheless, when she showered in public facilities it was difficult to look at the scar and, occasionally, the look of shock on the faces of others upset her. But it didn’t immobilize her. “I just smiled at them and answered questions if they had them.”
When subsequent chemotherapy took her hair, she went bareheaded or wore a scarf. Again, it was concern for the discomfort of others that bothered Reid more than concern for herself. “I want to impart that it’s not the end of the world. For me, it was a blip.” Reid’s surgeon made a comment that was particularly supportive: Beauty is so much more than what we see on the surface.
Reid has good examples in her life. Her son Jamie was born with microtia, a condition manifested by an underdeveloped ear. He is deaf on that side, but is successful, kind-hearted and engaging. He also wears his hair short and around his ears, she says. “He is definitely my inspiration.”
Reid, herself, is a great example of the attitude it takes to reframe the erroneous ideas and beliefs that might prevent people from rehabilitating fully. Pelletier says that, for example, if a patient is distressed that people might stare, he or she should remember that most people don’t stare that often.
“And remember that your friends and family will continue to love and support you if you give them a chance to do so,” he says.
This was the case for Reid. “I didn’t need pity,” she says. “I felt loved and supported by my friends and family.”
In Calgary, Tracy Coulter’s circle of family and friends has likewise helped her ride out the storms. She Skypes her father in Newfoundland, who knows just what to say. When Coulter was a girl, her father would hold her hair back when she was ill and tell her everything would be OK. “He is still doing that,” she says. Her husband, mother, mother-in-law and best friend have all been at appointments and surgeries. She knows it could be worse. The cancer, after all, has not spread. And her own inner strength is like a muscle she has developed; it keeps her from giving up.