how i care for prostate cancer: 'not every day has to be a good day'
9 minute read
natalie wild, right, and her husband stefan.
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natalie wild’s life changed suddenly when her husband stefan was diagnosed with stage iii prostate cancer at age 44, just one year into their marriage.
following stefan’s diagnosis, he and wild reacted differently to the news – he maintained a sense of hope, while wild found herself shifting between hope and pessimism. but despite her own feelings, she made an effort to keep her worries from him.
for wild, who is a people leader in her occupation, transitioning into a supportive, caregiver role felt instinctive, but she too faced difficulties that took time to figure out, including learning when to lean on others.
according to wild, stefan’s treatments were extensive and immersive, but the couple who lived within walking distance of a hospital where he received care were well supported by the doctors and nurses. even during palliative home care – a choice that was influenced by the pandemic – wild says that they had every support they needed. she was able to continue working while the hospital’s palliative care team would allow someone to come to the home to see him. on the medical side, nurses came to the house each day to administer medication.
“there was never any point that because we chose to have palliative home care, that i didn’t feel as supported as we would have if we had hospital care,” she says. “it was very powerful to have that strain removed and not have to rush to the hospital to ask questions.”
emotional toll and coping mechanisms
it’s not uncommon for those who are going through a serious illness to experience a range of emotions, including sadness, fear and anger. changes in personality and behaviour can also occur. though it was challenging at the time, wild, whose husband also experienced changes during periods of elevated stress, she managed to not internalize what was happening. reflecting back on his cancer experience, she says that the positive recollections outweigh the tough days, when the illness took over and her husband wasn’t himself.
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“i would often remind myself it wasn’t me, it wasn’t him – rather, it was the illness that was dictating the changes,” says wild. “it was challenging, but i learned not to take it personally.”
as her husband’s condition turned terminal, wild found herself unexpectedly divulging to strangers that her husband was going through cancer, even though she couldn’t fully understand the impulse behind it. a therapist offered insight, suggesting that her sharing was an attempt to alleviate her own shock and gain a sense of normalcy amidst the chaos – on days when the shock was intense, wild says that the impulse to share became stronger.
she took a leave of absence from work and she and her husband, who shared a love for travel, took a couple of trips. this time around, they embraced a new and more relaxed pace, all the while navigating the ebb and flow of positive and challenging days.
wild says that during the tough days, she retreated privately to acknowledge and address those feelings, and took the time to ask for support from others. she believes in acknowledging and embracing those emotions for what they are, and on days when her husband struggled physically or emotionally, she didn’t try to pretend that everything was fine.
it’s not uncommon for well-meaning individuals to make an effort to act positive and be cheerful around those who are going through a serious illness, but for wild, it was important to accept both the positive and negative feelings.
“not every day has to be a good day when you’re going through something like this,” she says.
the importance of self-care for caregivers
according to one study, caregivers who support individuals diagnosed with cancer, experience persistent fatigue and as the cancer progresses to a terminal phase, the demands on caregivers increase exponentially. as the health of the patient worsens, it can lead to both physical and emotional distress for the caregiver, and when they are no longer able to keep up or when they don’t have the ability to cope, it could lead to caregiver burnout.
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signs of stress or burnout can vary, but some of the common symptoms include restlessness, changes in sleeping patterns, a weakened immune system, feeling overwhelmed, crying more often, isolation, memory problems and increased mood swings.
while wild experienced feelings of guilt when she was away from her husband for an entire day, she eventually realized that a few hours of absence didn’t trigger the same feelings.
this led her to embrace a routine of going to the gym on sundays – there, she would have an opportunity to get all of her frustrations out through exercise and weightlifting, and following her workout, she would go grocery shopping – that was her most valuable personal ‘me time.’ she says that engaging in these activities was beneficial for her mental health, but the key for her was finding time in the day to do these activities.
so, whether it’s going for a walk, getting a massage, shopping or grabbing coffee with a friend, she encourages other caregivers to establish how much time they could give themselves to feel like they could find peace within their day or week, without feeling guilty.
“the cancer patient doesn’t always necessarily acknowledge that it’s a disease that affects everyone around them,” says wild. “of course, they’re the ones going through the pain and suffering, but it takes a toll on everybody. this is why you have to ask yourself what brought you joy before caregiving became your world?”
finding hope and inspiring others
wild says that while cancer patients have access to many resources and support services that are offered either through a hospital or community, caregivers have to get creative and explore all possible avenues of support.
according to a paper published by mcmaster university, about 20 per cent of the population serve as caregivers to someone in need, and yet, there is no recognition or proper financial compensation despite the fact that the lack of support can compromise their health, reduce their ability to provide continuing care and increase the overall cost and burden on the healthcare system and social services.
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wild says that many people are unaware that their employer may provide support through its employee assistance program, and that those services are often complimentary. these resources can be helpful to anyone, especially to those who are concerned about out-of-pocket expenses.
“there are support systems out there, it’s just about understanding what’s available and how to reach them,” says wild.
she shares that caregiving was one of the most challenging roles she has taken on and underscores that getting help isn’t something to be ashamed of – rather, it’s a constructive step that could bring greater clarity and a sense of balance to caregivers. wild, who found solace in her daughter and family during the most difficult periods of her caregiving experience, cautions that exhaustion and lack of sleep can compromise well-being and negatively impact one’s own health.
amidst all the challenges and chaos, wild has learned that there are brighter days that lie ahead, and that even in the face of loss, one can still be a source of inspiration for others. this is the role she is now embracing.
“i want to inspire others to not give up hope,” says wild. “when your role of a caregiver is over, your life will still continue to be here – it’s really important to acknowledge all your efforts and everything you did to help support your loved one.”
prostate cancer: facts and figures
prostate cancer, which represents roughly 20 per cent of new cancer cases in males, according to the canadian cancer society, has a favourable prognosis when it’s detected early – roughly 91 per cent of males survive five years after the diagnosis. but at an advanced stage, the survival rate drops to 30 per cent.
ethnicity, height, weight, genetic factors, family history and working with some chemicals and metals, may increase the chances of getting the disease, but sometimes, a connection to a known risk factor can’t be made – prostate cancer may develop even in those without any risk.
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while the disease is rare in people under 40, the risk increases after age 50 – in fact, males who are in their 60s are most often diagnosed with the disease. common symptoms usually include bladder changes, burning pain during urination, painful ejaculation, body pain or stiffness and persistent fatigue – usually, 74 per cent of people diagnosed with prostate cancer are diagnosed at stage i or stage ii, when their chance of surviving the disease is higher than when the cancer may be undetected or more advanced.
prostate-specific antigen (psa) blood test, which may not be fully covered by every province, measures the protein levels in the prostate. however, even when these levels are high, it doesn’t automatically confirm cancer – there could be other prostate-related problems causing it. conversely, individuals with prostate cancer might have normal psa levels. to accurately diagnose the disease, it is recommended that a psa test be performed in conjugation with a digital rectal exam (dre), which can help detect any lumps or cancerous changes in the prostate.
the challenges facing caregivers
when someone is diagnosed with cancer, roles within a family often shift. with adults assuming new responsibilities, children adjusting to the change, and the sudden financial strain that stems from a reduced or lost income, the reality can impact everyone’s health.
according to one study, in canada, that financial strain frequently leads to a significant amount of stress, with various other studies showing that anywhere from 38 to 71 per cent of people reported feeling this way. those who go through the cancer experience, either as a patient or caregiver, report that dealing with financial issues significantly impacts their daily life – how much money they had before, how well they previously managed their finances, and the income they lost either because of cancer or caregiving, all contributed to their levels of stress and in how they assessed their overall quality of life.
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caregivers, who primarily shoulder the weight managing the practical aspects of treatment, also often provide emotional support to the person who is going through the illness, all while managing their own emotions. despite their tremendous dedication and sacrifice, an astounding 8.1 million caregivers in canada, who together contribute 5.7 billion hours of unpaid work annually, go uncompensated for their efforts.
caregivers may find value in sharing their experiences with others in a similar role or by confiding in someone that they trust. a therapist could also help make sense of what they might be feeling and support them in finding stress reduction and coping strategies that work best for them.
easing the burden on those who support patients throughout a life-threatening or a chronic illness can help improve both their personal and professional lives, and this, in turn, may enhance the quality of care that they provide to those who rely on their support.
if you’re a caregiver and need assistance, connect with a support group in your community or subscribe for more caregiver stories. do you have a story about your experience as a caregiver? send us a note to info@healthing.ca and we’ll be in touch.
maja begovic is a toronto-based writer.
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