“The C Word.” Just typing the word cancer brings about a certain gravity of emotion. From the initial diagnosis to ringing the bell after the final treatment, and everything in between, a cancer diagnosis can bring about the good, the bad, and the downright devastating. Simply put, a journey with cancer can be an unpredictable roller coaster ride with many twists and turns and this journey impacts more than just the patient.
Cancer has far-reaching ripple effects and the number of lives that are forever changed due cancer is immense. According to the American Cancer Society, 1.9 million new cases of cancer will be diagnosed in 2021. And to widen that lens, each one of those 1.9 million people often have family and friends in their close circle who are directly impacted by this news and are experiencing this major life event right alongside the cancer patient. One relationship that is inevitably impacted by this is the spouse or partner. How does a couple absorb the shock of a cancer diagnosis and how do they weather the storm together?
To learn more, I spoke to my colleague and friend Loula Kontoulas. Loula is a Psychotherapist and licensed marriage and family therapist with Levine Cancer Institute (LCI) in Charlotte, NC, working within the department of Supportive Oncology. Loula has been working within psycho-oncology for 10 years. Loula has worked with a multitude of individuals, couples, and families as they face a myriad of issues associated with cancer. Loula and I chatted about the common concerns couples endure when cancer enters their lives including difficult communication dynamics, the importance of self-care, helpful resources, and the potential benefits of couples therapy during this time.
Q & A
Q: What are some of the most common mental health/emotional concerns you see with patients who are diagnosed with cancer that their spouse or partner should be aware of?
A: In a broad sense, the most common mental health issues associated with a cancer diagnosis are anxiety and depression. However, our patients often present with cancer-specific concerns that can lead to anxiety and depression. For example: Cancer patients enter “mortal time,” so whether they’ve been diagnosed with early or late-stage cancer, they begin to worry about their mortality. The safety of everyday life is challenged, they may fear pain and suffering, and uncertainty becomes the norm. Patients may grapple with why cancer happened to them and wonder if they did something to cause it. Deriving meaning from their cancer experience then becomes important, and patients will often want to live healthier or more fulfilling lives if they are given a second chance.
Patients experience anticipatory grief and depression if facing death or the possibility of death as they imagine the prospect of leaving their loved ones. This is particularly the case with parents who have cancer, because they worry about missing their children’s important milestones and events, such as graduations, weddings, etc.
In addition, there are daily losses cancer patients may experience during treatment, such as missing school functions or not feeling well enough to spend time with friends and family. Furthermore, the lingering effects of cancer treatment may cause distress as patients transition back into their lives after treatment. For instance, patients who have had chemotherapy may have persistent joint pain, neuropathy in their hands and feet, and cognitive impairment, all of which can impact their ability to return to work and normal life. Life seems to change significantly during and after cancer.
Q: What are some common relational issues couples experience when cancer enters their lives?
A: Role changes are very common with cancer. The couple dynamic shifts from an intimate partner pattern to a patient-caregiver pattern, leading to stress, resentment, and unmet needs. Because so much emphasis is placed on the patient, it’s important not to forget the difficult job of the partner who has become a caregiver.
Intimacy and sexual functioning are also impacted due to stress, anxiety, role adjustments, and treatment that can cause tension in the relationship. Both male and female patients may experience changes to their bodies or appearance. They typically lose interest in sex or experience a lack of desire. Women may go through early menopause due to hormonal therapy, and they may feel pain during intercourse due to vaginal dryness. Men may experience erectile dysfunction, problems with ejaculation, and nerve damage. Feelings of grief, anger, and fear may be triggered because of these changes or losses.
Q: What communication issues do you see most often with couples trying to manage the stress and emotional toll of cancer?
A: Communication issues are quite common, and often involve unmet needs that remain unexpressed. I hear from patients that their spouses or significant others are relatively good at meeting practical needs, such as attending medical appointments or helping around the house. However, they don’t often meet the emotional needs of the patient, leaving the patient to feel alone and not understood. It’s important to create an atmosphere of safety, so that each partner feels comfortable expressing needs and feelings without fear of judgment or rejection. Examples of specific communication issues include: The patient being told to be positive when they’re struggling; the caregiver trying to fix an issue vs just listening; and the patient not wanting to burden their partner, so they keep feelings to themselves.
Q: How do you see couples therapy being beneficial to couples facing cancer?
A: There’s so much value in couples therapy for cancer patients and their significant others. There are many changes during and after cancer that affect each partner. Couples therapy can help couples navigate these changes as they happen and even anticipate problems that might arise later. This type of therapy can improve communication, facilitate the expression of feelings, identify unmet needs, and build emotional and physical intimacy.
Q: How important is self-care for both partners throughout their journey with cancer and what have been some effective outlets for your patients?
A: Self-care and couple-care are hugely important. For self-care, I recommend meditation, deep breathing, relaxation exercises, being present in nature (your backyard is great!), yoga, and taking walks. Many self-care techniques can be done together as a couple, but here are some additional tips to nurture your relationship during (and after) cancer:
- To borrow from marriage and family therapist guru, John Gottman, remember to turn toward each other
- Be accepting of yourself and your partner
- Make it safe to talk about feelings, difficulties, sex, and what each partner wants, needs, or fears
- Create a little romance (candles, soft music, date nights, etc.)
- Regarding intimacy, be creative and open about new techniques and try new positions that feel more comfortable
- During love making, let your partner know what feels good or not good through words or gentle nudges with your hand
- Discuss whether you want to make love with or without your wig or scarf on
Q: Can you recommend any helpful books/literature for support or education ?
A: The Human Side of Cancer: Living with Hope, Coping with Uncertainty by Jimmie Holland, MD and Sheldon Lewis.
The Art of Conversation through Serious Illness: Lessons for Caregivers by Richard McQuellon and Michael Cowan
Need additional support?
The spousal relationship holds so much emotional weight throughout the journey with cancer. Having an outlet to express feelings, learn communication skills, and ultimately have a safe place to fall apart if needed can be incredibly valuable amid the fight with cancer. Cancer is undoubtedly one of the most challenging events a couple can go through and having the right emotional support in place can help lighten that load. If you and your partner are in need of some extra support and live in NC, SC, AZ, or TX, please consider contacting Connect Couples Therapy.
I would like to thank Loula Kontoulas for sharing her time, thoughts, and experience on this topic. Her expertise in this area of psychotherapy is highly valued and the work she is doing with this population is assuredly touching many lives in a positive way. Loula, thank you for all that you do.