by Natasha Scott, ESCA volunteer
My father-in-law’s two-year battle with cancer left him indigent. He was a successful lawyer with his own firm, a source of wisdom for his kids, a multi-marathon runner, and a volunteer for a community support group. For fun, he dabbled in the stock market and collected antique pens. Perhaps he smoked too much, or drank too much or perhaps genetics worked against him, but when cancer appeared and treatments began, he went from being independent and energetic to an emaciated version of his best self—too sick to work, to drive, unable to digest solid food, too tired to clean and sometimes bathe. His journey was not unique. Cancer can create a profound change in how you live, and it doesn’t give you a choice.
But my father-in-law was fortunate. He had many people in his life able to help him. Not everyone does and so thankfully there are associations like the English Speaking Cancer Association (ESCA) that can offer peer support for many patients who need help getting to appointments, filling prescriptions, grocery shopping or just walking the dog. However, peer support is not only for patients. It’s also there for the silent heroes who, either out of love or out of goodness, provide an unwavering support, for months or sometimes years, to someone diagnosed with cancer.
In Britain they’re called carers. In North America, they’re called caregivers. Collectively, they are the family, friends and neighbours who look after people who are ill. Many times care giving is a daunting role that one day is suddenly thrust upon them.
“My husband, who was a keen rugby, water polo, and squash player was on a business trip to the United States when he suddenly contracted a terrible pain in his stomach,” recalls Kate an ESCA peer supporter. “On his return to Geneva, he immediately went to see our general practitioner who sent him for a scan. It turned out that it was stage IV colon cancer. It felt as if the world collapsed. As my son said: ‘until now, I thought that this only happens to others.’”
For Patsy, director of communications at ESCA, a cancer diagnosis meant an immediate hospital admission. “They wanted him right away, but he didn’t want to stay at the hospital. He wanted to be home,” explains Patsy. “When I suggested this, they looked at me like I had three heads.”
The desire to carry out treatment at home, especially for the terminally ill, is not unusual. The option can create a more intimate setting. It can provide more privacy and comfort for the patient and the family, but it also comes with other challenges especially in countries like Switzerland where in-home hospice care is uncommon. “We had a visiting nurse but she just did the basics, checking his blood pressure and heart rate,” says Patsy. The lack of in-house support leaves carers struggling to fulfill the wishes of their loved ones.
One of the challenges carers face at home is mobility, and this becomes especially problematic with the progression of the disease and over the course of several rounds of treatment. The patient’s precarious condition makes it more difficult to leave the home to perform simple tasks, like filling prescriptions. “Taking him to appointments became tricky. I’d get as close as I could to the front of the hospital, drop him off, and then have to leave him for fifteen minutes while I tried to find parking. Temporary handicap stickers were not available.”
And as the patient becomes weaker, lifting, sitting, and bathing becomes physically exhausting. Even trips to the bathroom become an ordeal. “I couldn’t lift him anymore,” says Kate. “One time I had to call the fire brigade because he had gotten up in the middle of the night to use the bathroom and was too weak to return to bed. I don’t think I had one full night’s sleep for many months, always with an ear open in case he needed anything.”
Another challenge carers face is how the disease affects other members of the family. There’s no manual on how to navigate cancer, and people have different ways of responding to it. When Edith was diagnosed with pancreatic cancer, her husband of 50 years initially had difficultly accepting the gravity of the illness, unable to understand why she was lying in bed all day. When Cathy’s son got sick, she wanted normalcy—to maintain the family rhythm as long as possible—whereas her husband wanted to create moments with his son and started frequently inviting friends and family to the house.
“The hardest thing for me was that my father didn’t want her to know that she was terminally ill,” says Sally, whose mother has since passed away. “I think people realise when they are going to die and…to deny the fact must be extremely hard [for them] to deal with. I think one must always empathise with the sick person and take one’s cue from them.”
Many carers also have children to worry over. This is where outside support can be a blessing.
Kay and her husband had three children and on his sixtieth birthday he was diagnosed with colorectal cancer. Treatment was intensive and eventually burned his urethra causing urinary tract infections. As Kay recalls, “The first summer when he had eight weeks of chemotherapy and radiation and was very ill, friends invited my youngest son on a holiday to Croatia for a month. We were so glad he didn’t have to see his father suffer so much. Then my father took all three [sons] on a trip, which turned out to be an amazing bonding experience. That was definitely a good thing.”
The most conflicting issue carers face is accepting that they too need care. Cancer is an unpredictable disease that requires, on top of the household chores that are normally shared, nursing and entertaining while managing personal grief. Months can turn into years and while, for many, this is a good thing, it can also become too heavy and overwhelming. Many carers wrongfully assume that if they are looking after themselves, they are neglecting others. The need for personal time gets displaced by an irrational guilt because after all “it’s not you that has cancer so what are you complaining about.”
From the first International Conference on Compassion & Presence: Spiritual Care for the Living and the Dying, Kate learned about the importance of keeping a balance in one’s life. This was demonstrated using a sponge and a basin of water. “Give as much time as you are comfortable with, making sure that there are moments of rest for you, and set boundaries…before you are too tired and ‘drip’ resentment and negativity.”
For many, overcoming the stigma associated with self-preservation is achieved with the help of community support systems. “Despite his diagnosis, my husband still smoked and I was afraid of leaving him alone in case he started a fire. My neighbour became a big help, allowing me to go for walks, to have normal conversations,” says Patsy.
Kay also discovered that taking time for herself, going on a previously planned weekend trip with the girls, not only re-energized her but also took the pressure off her husband who, at times, felt like a burden.
Unfortunately the perception of inconvenience can prevent many people, patients and carers alike, from asking for help. For this reason, many of ESCA’s peer supporters are former primary carers; they know firsthand the difference outside support can have on the quality of life for those managing a life-threatening illness.
Counselling also helps unload the emotional weight of cancer, for both the carer and the patient. Having someone to listen and being able to communicate deep feelings in a familiar language is an important service that ESCA is proud to offer to those speaking English in Switzerland.
“The thing that helped the most in the last month, when the pain was horrible and he was in the hospital, was the ‘walks’ we went on. We would hold hands and he would tell me where he wanted to go and I would recreate a walk in the mountains, on the beach or wherever we had been together. I could always feel him relax, taken away from the pain.”
With carers, no one walks alone.
English Speaking Cancer Association
www.cancersupport.ch
