[2022-02-22] In your words: cancer's impact on loved ones
A few weeks ago, I asked Jenesis readers How has a loved one's cancer affected you? I was deeply moved by the responses I received. The answers were filled with painful emotions—shock, heartbreak, sadness, fear, frustration, anger, helplessness, guilt, exhaustion, grief—with glimpses of positive feelings, such as caring, hope and gratitude.
Many of the people who responded to me had lost a loved one to the disease and continued to feel grief. Some had supported family members who survived, but their relationship changed. Some grew closer to their cancer-afflicted loved one or rose to the challenge of caring for the person. All came face-to-face with the fragility of life.
I have used respondents' words as much as possible, as they are more powerful than my paraphrasing would be.
Wounded | Scarred
For some Jenesis readers, just responding to my question was painful, as it reopened old wounds. One woman wrote: "I've thought about my answer for a few days. I knew it would be difficult for me to write about how cancer has affected me. Here goes...." She had lost a sister to breast cancer, is supporting a daughter who underwent a double mastectomy after the discovery of cancerous cells in her breasts, and is watching me go through cancer. "I was devastated each time," she said.
Similarly, another woman began her response with these words: "I don’t know if I can do this."
It appears that for some, having watched a loved one go through cancer makes it harder to experience it again.
One man wrote: "Recently, a close friend was diagnosed with inoperable pancreatic cancer. My reaction has reminded me of my journey through my sister’s death. It’s being in a stunned state feeling totally helpless. I’m trying hard to support my friend but it’s been pretty tough. Her needs come way before mine."
After I completed chemotherapy for ovarian cancer, a friend shared a story that he had been reluctant to pass along before then: "My mother died of liver cancer when I was young. During the 3 month interval between the time of diagnosis, surgery and her death there was no treatment, no joy, and no hope. I watched as all the adult pillars of strength in my life fell apart one by one as we waited. I processed all this through the eyes of a 12 year old, and my overwhelming emotion at the time was—and remains—terrified dread. To this day, Mother’s Day (the day she died) is hard for me. I leave the room if a show on TV involves someone’s mother dying. The scars endure, and were once again inflamed when you first told us that you had been diagnosed with ovarian cancer."
Shocked | Surprised
Shock and surprise were common emotions among people who learned that a loved one had been diagnosed with cancer, even those who had previously had a family member face the disease.
One man wrote to me: "I’ve lost too many family members over the years to cancer. After a while, the initial surprise, then shock...moves on to acceptance. It’s always been a tough journey."
Another person who learned of my diagnosis stated that she was shocked, asking the question "why Jen?"
Devastated | Heartbroken | Sad
The woman who had lost her sister to cancer was devastated when she learned of her daughter's cancer, writing, "My heart was broken and I hardly heard the words she was telling me." And when she learned of my cancer, she wrote that she was "sad, concerned and scared," as she was well aware of what the next few years would have in store for me.
One woman whose husband was diagnosed with lung cancer wrote that she went through many stages of emotion. "It first felt like my world was falling apart. With a non-curative diagnosis, it felt like my husband [and] I were living with a ticking time bomb not knowing when something would happen, be it dealing with chemotherapy after effects, hospitalization or death. I also felt very well supported by family and friends and their messages and acts of kindness helped me ride the storm."
One man who had just finished supporting his stepson as he dealt with leukemia was "completely devastated" when, just three months after his stepson went into remission, he learned that his wife had breast cancer. "How can we possibly deal with more?" he asked himself.
Another woman supporting a family member with cancer wrote: "When I am sad, I cry thinking about what you are going through and that I can’t make it go away."
Fearful | Worried | Terrified
The man who supported both his stepson and wife through cancer treatment noted that he felt "Overwhelmed at first, then terrified as we learned more, then exhausted."
Another person summarized her feelings, upon hearing of her friends' cancer diagnosis, quite plainly: "Scared for that person"; "Afraid they would die"; "Afraid of losing my friend."
One woman described multiple fears in relation to my cancer: "I am anxious about the future and what that might look like." "There is not a day that goes by that I do not think of you and how you are coping. Not a day!"
Some people's fears extend to their own mortality. One woman, who had lost multiple family members to cancer, wrote: "I live in fear of this disease and admire anyone who can face each day with a positive attitude while afflicted by this disease."
Frustrated | Angry
Frustration and anger were common themes, particularly among those who felt that their cancer-afflicted family member had received poor care or that they, as caregivers, had been ill-informed by healthcare professionals.
One woman shared her story: "I lost my father to lung cancer almost 20 years ago. It was very fast. I had, and still have, lots of anger. I think if he was younger they may have acted quicker when he started losing weight for no reason. Your blogging about getting informed and having a coach and making decisions is SO important. At the time doctors deferred to my mother as the decision maker and they would only share info with her. My mother was in a daze. Caregivers are not always able to make good decisions. They are trying to process what is happening and trying to protect themselves from the reality of the situation. My sister and I had to corner the oncologist in the cafeteria and not wanting a public display he brought us to his office. There I could ask the questions my mother wouldn’t and the questions for which I was afraid of the answers. For me it was overwhelming trying to process what was happening and feeling no control. I wished it was me instead of Dad and it was heartbreaking to watch my mother."
Another woman whose mother died of breast cancer decades ago wrote: "we developed a very negative attitude toward the surgeon who had done mom's mastectomy. He told her that he got everything and further treatments were not necessary. The surgery scars were awful. When she had a recurrence, we turned our blame to his lack of professionalism in supporting her needs. The doctor's comment was 'I am surprised that you are still alive.'"
Another woman experienced frustration and anger "Watching my father live the hardest 16 months of his life. Experiencing the gaps in the medical system, seeing how hard it was for my mother—and what it did to her own health, and trying to navigate my own experience."
In relation to my cancer, a loved one confided: "I am sad and angry I can't change the course of your diagnosis and your having a BRCA gene variant."
Some people decry the perceived lack of fairness associated with a cancer diagnosis. One man admitted: "I felt frustrated at the fact that such a good person received a cancer diagnosis and that they are entering a challenging journey; or that close friends are trying to manage the situation with their parent’s diagnosis."
And another person wrote: "In short, a loved ones’ cancer is like being on a roller coaster of emotions, including anger, coupled with utter exhaustion. The worst part is the fear and the feeling that you can’t do anything about any of it."
Helpless | Lacking control | Unsure of what to do
Many respondents to my question talked about feeling helpless—unsure of what to do and lacking any control over the situation.
One man used the term "limited" to describe the difficulty of supporting a cancer patient living on the other side of the country and of trying to be there for a friend whose parent had been diagnosed with cancer. He was limited to listening and encouraging, which didn't fit with his proactive nature.
People who were young when a family member went through cancer, particularly if it was years ago, felt especially powerless. The woman who had lost her mom to cancer decades ago and whose sister-in-law similarly supported her mom through breast cancer many years back, expressed this: "As children we never knew what to ask or how to provide support. Neither mom would talk about their cancer. My mom would never say the word 'cancer'. She referred to cancer as 'C'."
The instinct of some to want to help a friend or family member facing cancer can sometimes be frustrated when a closer family member is in the picture. One woman explained: "When my sister was diagnosed with Cancer my first thought was—what can I do to help.... Her husband was at her side at first but as things got tough he had his own struggles and checked out. When someone is in a crisis, health or otherwise we tend to step back and let those closest to them take over, fearful to overstep. It's hard for people to ask for help and sometimes the offer isn't good enough, you may need to be a bit pushy."
One woman and her sister had a unique perspective since both had dealt with breast cancer. One sister stated, "my sister and I had the exact same reaction. It was harder on us to watch the other go through a cancer diagnosis and treatment. We both attribute that in part to a perceived lack of control. When you're going through cancer, you feel like you have SOME control, but when a loved one is going through it, you feel like you have no control. I also spent a significant amount of time worrying about how my sister was feeling. So I was worried generally about whether she would be okay, but also worried about what she was thinking and how she was doing emotionally. Double worry. Bottom line is that it's brutal on everyone involved, but it was worse for both of us to watch a loved one going through it than it was to go through it ourselves."
Guilty
Again and again, people who answered my question referenced feelings of guilt—over their response to their loved one's cancer diagnosis, their judgements about the patient, their good fortune in not having cancer, their own needs, and their inability to stop the cancer from affecting the relationship with their loved one.
One woman felt guilty for how she responded to my diagnosis: "As I look back on that day, I feel guilty that I did not comfort you. That guilt feeling will remain with me for as long as I live." She added: "I feel guilty and ashamed for thinking of the worst case scenario which is the possibility of having to live without you."
Another woman felt guilty for multiple reasons and very candidly shared with me her disappointment in a friend who had not addressed previous health issues. "I felt she didn’t care about herself then immediately felt guilty for feeling that: Who am I to judge someone else? I really have no idea what they are going through." She added that she was "disappointed that my friend did not take me up on my offer to come with her to her appointment—then immediately felt guilty for making it about myself."
A third person admitted: "At this moment, I feel fortunate that I have not been diagnosed with a life-threatening illness while at the same time I feel guilty about feeling fortunate." Similarly, she wrote; "I feel fortunate that I do not have the BRCA gene variant, but feel guilty that I feel fortunate."
One man whose relationship with his wife changed as she went through treatment for breast cancer acknowledged: "It might be wrong or shallow, and maybe not everyone‘s experience, but after changing dressings and drains for weeks, it is impossible to look at your loved one in the same way. She felt diminished from the surgery itself and humiliated that she had to let me see her like that. As hard as we tried not to let it, it changed everything."
Some people face residual guilt for things they didn't do while their loved one was alive. One woman second-guessed herself: "My Dad was never a talker so true to form this wasn’t his time for deep conversations but I wonder if I should have asked if he was afraid or many other things."
Fatigued | Tired | Exhausted
Many people mentioned fatigue and exhaustion, though often as part of a range of emotions, almost as though referencing tiredness on its own would suggest disloyalty to their loved one.
One man wrote: "And perhaps it’s unfair or just not right, but I also felt a sense of fatigue or being tired—this may be because I was trying to keep tabs on and offer support to so many people who were diagnosed at the same time or had a parent diagnosed (especially a friend whose mother was diagnosed with very weeks left) combined with other things going on my side of things."
A woman confided: "I am tired from feeling guilty, sad and angry and from having little control over the outcome."
Uninformed | In the dark
Some respondents struggled with a lack of information from healthcare professionals or the person with cancer.
One woman stated: "Nothing was really very clear and we were afraid to ask. ... It is interesting that when you do not have a sense of the scope and sequence of the prognosis, you are afraid to ask and aren't sure exactly what to do or what to ask." She added: "I have learned more about cancer identification, needed procedures, treatments and recovery from your blog" than from her prior experience with the disease.
Another woman also expressed appreciation for my blog, noting that open communication from the cancer patient helps their loved ones. One of this woman's family members was often too tired after treatments to provide an update, so the woman frequently got them second hand. And another family member is a very private person, leaving the woman to have to ask for information.
Other respondents struggled with a lack of trust that the cancer patient was being upfront.
One woman said to me: "I worry that you are suffering and might be feeling so alone, despite you saying to the contrary." "I fear that you will keep sad information from me under the pretext of protecting me." "I worry that you will not ask for help when you really need it."
Invisible
Though the word "invisible" came up only once in all the responses I received, that one mention was so heart-wrenching and significant that I kept this response in its own category.
A caregiver to more than one cancer patient, one man wrote: "The only people who ever asked how I was doing were people who had been through it themselves. To everyone else, it was like I was invisible."
I understood what my friend meant about being invisible. When someone says, "A loved one has been diagnosed with cancer," the listener usually focuses on the loved one, not the person who cares for them. I'm certain that I have done the same. Instead, we should say to the caregiver: "I'm so sorry for you and your loved one. It's very hard to watch someone go through cancer. I'm here for you if you need support or just someone to talk to."
In need of support
It was clear from the responses that caregivers need their own support.
One woman who saw her young daughter through non-Hodgkin's lymphoma realized, in hindsight, that she would have benefited from mental health support. While in a routine of traveling from one city to another for treatment, the woman was not aware of her own mental health needs and wished that the healthcare team supporting her daughter had reached out to her.
Another woman shared a poignant story of thinking she was coping during her father's illness only to realize that she wasn't coping very well. She wrote: "So here I was keeping it together, so I thought, in this new job. One day a colleague pulled me aside and said I hear your Dad is very sick and maybe you need to take some time or step back. She told me she knew I was new and hadn’t yet formed friendships or perhaps didn’t have people at work I could turn to…something to that effect. I broke down crying and we had a good chat. And she was basically telling me that even though I thought I was keeping it together I wasn’t. Things were showing at work. I will be forever grateful to her." She went on to say that family members and loved ones of cancer patients often don't know what they are feeling or what they need. Among those needs, she said, was help with having conversations. "Are we overstepping? Are we too distant?" Another need is simply "to be loved ones and not always caregivers."
Just as many cancer patients don't talk about what they're going through, few caregivers (probably much fewer) share what they are experiencing. That's understandable because they probably want the focus to be on the patient. But their needs are just as real.
Sometimes what caregivers need is a return to normalcy. One woman recommended that people "treat the person who is living with someone with cancer the same as you did before the diagnoses and or treatment." She continued: "I found that once I returned to work after my husband's stem cell transplant where I had to be off for seven months to deal with my own mental health issues[,] I was not treated the same way as I was before I took the needed time off. People who suffer from something like this, and who take the time they need to heal themselves are not only ready to handle work but depend on it to move on and feel like they are back in control with some portion of their life. I did realize that this was not done on purpose but it was because people did not know how to deal with what I was going through and thought the less stress I had at work was better for me because of the stress I faced every day at home, living with someone with Cancer. Communication is key, no matter what the situation may be."
Grieving
Everyone who had lost a loved one to cancer expressed a deep and abiding grief.
Despite how commonplace cancer is these days, one man said to me, "it still has the power to disrupt our lives so that life is never again the same." He described the death of his youngest sister as a bombshell, saying: "She was still in her forties when she died. I have never felt such grief and loss. In some way I still mourn for her today but in a quieter way."
One woman whose sister died of cancer compared it to losing a twin. She told me: "From a young age we were very close and often asked if we were twins. I think of her everyday....she was beautiful inside and out."
A man who lost his aunt to cancer stated: "I miss her up to this day! Cancer can take the best away from us."
A woman whose father passed away expressed: "I now know I didn’t grieve…trying to be there for my mom and sister. So today I live with the repercussions of that. The loss of my best friend and biggest cheerleader means I have a permanent hole in my soul."
But amidst the grief, some respondents shared glimmers of hope and gratitude.
One woman reflected on life almost three years after the death of her husband: "When he passed away, my world did fall apart and [I] was thankful again for the support of family and friends. Our dreams for the future were shattered into a million pieces. Fast forward, coming to the 3rd year anniversary of his death at the end of February this year, I feel alive again and ready to move forward in my new life. I have accomplished so much on my own and knowing he has been guiding me."
Another woman wrote: "I have a huge lump in my throat, as this time 12 years ago my child was losing her tenacious hold on life, and my heart broke a little more each day. All I could do was praise her life to her and hold her close. I have put that broken piece in a corner of my heart, where it will remain. I thank God that I was chosen to be her Mom for almost 47 years and that for the 6 years she LIVED with cancer, I was chosen to be her Chemo Bud .....and her BUD in every way, and during that time we shared many laughs and a few tears, and I soaked up her love every day."
Caring | Closer
No matter how many times I've read that last passage, I still get tears in my eyes, especially at these words: "I soaked up her love every day." This is the bittersweet part of cancer: it sometimes brings us closer to someone than we might otherwise have been, but that closeness can be short-lived.
This wise woman, who had lost one daughter to cancer after soaking up her love, advised another daughter whose child confided in her that she too had cancer: "that is the best possible news of the worst possible news." In other words, her daughter would have an opportunity to help her granddaughter because the granddaughter had reached out.
Others expressed gratitude "for the opportunity to offer help" to people who had shared their cancer diagnosis, or to spend time with a loved one.
One man shared the "deep dive" he and his dad did as his father underwent and ultimately overcame cancer. "I listened to him. Cried with him. Smiled with him." They acknowledged that cancer sucks but focused on "spreading love and joy in every part of our lives."
Some took on particular roles. One woman became her sister's "night life planner," adding that she felt that she and her sister "became best friends again."
Another woman supporting her sister through cancer asked: "I wonder how do you make up for lost time?" She answered her own question by saying, "You don't—you enjoy the time now."
One man responded to my question by writing: "I am not quite sure what to say, but I want you to know I care!" He surmised that I heard from the men in my life less frequently than the women, but wanted me to know that it didn't mean the men cared any less. He said: "I am sure you have experienced less communication from males in your life, but know that all males care as much about your health and well being as...the females in your life."
Hopeful | Optimistic
Some respondents spoke of hope.
One man said that when a loved one was diagnosed with cancer, he initially worried, but then took comfort in "the progress that medical science has made so far in Cancer treatment." (According to the Canadian Cancer Society and the Government of Canada, the five-year net survival rate for cancer has gone from 55% in the early 1990s to 64% in 2021.)
Another man deliberately looks on the positive side, believing that I will be fine. "Thinking anything else is not a fun place to be.
And a woman whose husband had cancer wrote: "I also felt like we would not give up and keep the hope alive by fighting against this terrible enemy. Then, I became the warrior protecting my husband from whatever was next and helping him in any way I could to help him feel normal and ride through the rough days."
Energized | Positive | Grateful
Given the statistics, many people will survive cancer and go on to thrive, providing hope for their loved ones and cancer patients who come after them.
One man stated that "when things started going the right way for several people, it was energizing."
Thinking of loved ones who had dealt with cancer, one woman said that she was "Proud and in awe of how they 'got on with it,' put their fears aside and followed their treatment plan."
Another woman said to her sister: "I am thankful that, despite your illness, we can still laugh and joke about life."
Several people shared stories of very special nurses.
A woman who had lost her father to cancer commended the nurses. "One pulled me aside the day before he died and said 'you have a daughter who is very close to him? I think it’s time for her to come.' My daughter...is the oldest grandchild. At the time she was in her 4th year undergrad writing exams. We got her home in time and only because of that nurse. The nurse also stayed past her shift to wait. She knew, but we didn’t, that it was his last night."
In another heartwarming story, one of the nurses of the young patient who had non-Hodgkin's lymphoma asked the girl whether she wanted something special. The young patient answered McDonald's french fries. So the nurse bundled up the little girl and took her and her mom to a McDonald's drive-through for french fries. Now 19, the young woman still remembers that nurse.
Conclusion
I have come to realize just how much a cancer diagnosis affects the loved ones of the patient. I had seen it to some extent, but hadn't fully appreciated until now how hard it is for the caregivers. It's a story that isn't often told.
I share this post for:
- all the people who have been there for a loved one going through cancer—know that you are not alone;
- all the people like me who are dealing with cancer—know that your disease deeply affects your loved ones (but know, also, that that is not your fault); and
- all the people who interact with someone who is supporting a cancer patient—know that they are often as heartbroken as the patient, possibly more so, and need your understanding.
My deepest thanks to everyone who contributed to this post. I applaud your willingness to share your story despite the pain. You have made a difference.
