harnessing the power of cancer support programs to cope with the emotional scars
cancer support programs are not a one-size-fits-all approach, but rather are tailored to the individual and their unique experience beyond treatments and the physical aspects of the disease
9 minute read
caroline petznick has stage 4 breast cancer, and attending cancer support groups has been a saving grace for her and her family.
caroline petznick
cancer may be a physical disease, but it can leave an inescapable emotional scar. the aspects of cancer that affect the body, such as symptoms and side effects from treatment, are challenging to contend with in their own right, but when the mental toll is added into the mix, it can feel indomitable.
caroline petznick, a mother of four (five if you include her dog), started her journey with cancer at 45 when she went in for a routine pap smear. while there, she requested a mammogram as a precaution, which led to even more tests.
when all was said and done, caroline was diagnosed with stage 4 breast cancer that had spread down her spine and into her bones.
“that just stops you, right?” she said. “i just burst into tears.”
caroline notes that she had a solid support system in her family, including her husband and father, but that didn’t stave off the isolation she felt from hearing that she would now be thrust into a life full of cancer treatments, leaving her career, and wondering what her new life was going to look like.
“there’s a lot of feelings of ‘how didn’t i know? what did i do wrong? where did it come from?’” she said. “all those big, big emotions that the brain just can’t comprehend.”
however isolating cancer can feel, caroline and others who have been diagnosed with the disease are not alone when it comes to dealing with these big emotions.
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laura pasqualino, a social worker, mother of three, and program leader at wellspring, a cancer support network, notes that these emotional scars, regardless of how deep they may be, aren’t easy to deal with.
“it’s hard to know what they are, where they are, how much they’re affecting people,” she said.
the emotional scars of cancer
experiencing fear, anxiety, depression, and other mental anguish in the face of a cancer diagnosis amplifies the challenge in a way that many people simply can’t or don’t understand unless they have lived through it.
“fear kicks in pretty quickly around the time of diagnosis, and so many people remember their diagnosis moment,” said laura. “the details of it often stand out in really strong ways because they’re associated with this really pivotal life moment for people.”
people may also see the world differently because of a cancer diagnosis, changing their perspective in ways that they never thought possible. anger is also common amongst people diagnosed, as is confusion, and in some cases, even shame.
“perhaps they’re looking back on behaviours or things that they’ve done over the course of their lifetime and that can bring feelings attached to it,” said laura. “perhaps i took really good care of myself, but i got cancer anyway, or perhaps i was making lifestyle choices at the time that make me feel sort of bad about the fact that i got cancer.”
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laura notes that the combination of these emotions, alongside having to go in for cancer treatments and appointments, makes the entire ordeal much more difficult than just dealing with a physical disease.
for caroline, worrying about others is also an emotional challenge she must cope with.
“what’s going to happen to my husband, my kids? what does this mean, you know, preparing them for my death? how do you find that stuff out?”
scanxiety, a term often used in communities that have dealt with cancer diagnoses or other health scares, is an added weight on the shoulders as well. essentially, it’s the time between scans and results where the mind races between scenarios, good and bad, while waiting for the news.
“it’s literally life and death,” said caroline. “once i started on some medication, is it working or not? this says everything’s lit up. is that because it’s growing or because it’s healing? what does this mean? so, initially the scans are every three months, and it’s like, how do you live in between waiting for the other shoe to drop?”
laura echoes this sentiment, having worked with people who have dealt with scanxiety themselves, even in cases where their prognosis is a best-case scenario.
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“advanced or not advanced … it’s an incredibly stressful time,” she said.
caroline also notes that losing your identity and experiencing the isolation that comes along with that is another heavy emotional aspect of her diagnosis, one that she’s still working on because when she started her cancer journey, her career and the things that she would do just for her were benched indefinitely.
“i’m still a mom. i’m still a wife. what do i have that’s personal to me?” she said. “when you stop working and you know at 45, all my friends are in the mid-career age, they’re at work all day and my kids are in school and the temptation to want to pull them because i won’t be here but also going, what’s best for them is to have the routine, but what about me? just waiting for the next scan. it’s a pretty lonely spot on top of being afraid and anxious.”
between it all is the grief that pops up, sometimes when people least expect it, and sometimes when they’ve known it was coming.
laura notes that grief comes in the short-term and the long-term—the short-term being hair loss.
“they’re looking in the mirror and seeing back a reflection of a person that appears sick and before that, say if i had breast cancer and i found out that i had breast cancer but otherwise i felt well, suddenly i’ve lost my hair and i look in the mirror and i look different. so, there’s an impact there on my body, but it carries a weight to it,” she said.
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caroline notes that the anticipatory grief is often “heart-wrenching,” especially when it comes to meeting other cancer patients and forging bonds with people who may eventually go into remission and leave the community of support they were a part of while dealing with cancer treatment, or those who succumb to the illness.
both types of friendships “feel like a loss because they were there and then they were gone.”
finding support through the ups and downs
cancer support programs, such as the one offered by wellspring, are designed to help people navigate through these emotional waters so that it’s all just a little lighter on their backs while they work to go into remission or find a level of health that works for them.
according to laura, they can be significant in creating a community of people who truly understand what others may be going through while providing people with opportunities to learn how to cope with their own situations in a way that benefits them.
“this community connection with other people who understand, i don’t think i’ve ever been in a group where people haven’t talked a little bit about how helpful it is to say something and have what i call this knowing nod from another participant … that conveys ‘i know what you’re thinking and feeling because i’m feeling it, too,’” she said. “getting that connection of other people who understand is incredibly impactful, so people will report feeling less lonely, less isolated, less stressed, more hopeful.”
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caroline, who had found that some support groups where she was the “worst-case” scenario weren’t as helpful as others. but when she found those who were also experiencing a terminal diagnosis, things began to turn around.
“it was positive amongst other people with the same diagnosis,” she said of a specific art therapy program she participated in.
she also notes that her time with wellspring and working with laura helped her reinforce some decisions she made when it comes to sharing her cancer diagnosis with her kids, decisions that sometimes caused her stress due to not knowing if she did the right thing.
“having that group facilitated made it feel safe, so i could be more vulnerable than usual. it was that facilitation piece. it was that expertise, and she (laura) was able to draw on her experience,” said caroline. “in some cases, there were parents that were choosing not to tell their kids, and it reinforced our decision that we had told our kids and how we had.”
she also notes that hearing stories from other parents, however heart-wrenching they were, allowed her and her husband to feel as though others out there “really get it” regarding their specific situation with a terminal cancer diagnosis.
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being involved in an advanced cancer group with wellspring also allowed her to feel a connection to others that those in her life couldn’t provide, not because they didn’t love her, but because until you’ve experienced it, it’s hard to relate.
“my friends really care about me, but they don’t get that piece. they don’t appreciate or understand some of those things,” she said. “exhaustion and how to choose that if you want to do an activity, you won’t be able to do the other, or if you push through, then you lose three days of sleep to recover.”
while laura and wellspring helped caroline significantly with her emotional cancer scars, no two people’s experiences will be the same. laura notes that in many cases, people want to seek out help, but “sometimes they don’t quite know what they need.”
“wellspring, just as an example, has over 50 programs,” she said. “they’re evidence-based, professionally-led, but it’s almost like matching up the need with the appropriate group. so, for example, somebody comes in, they’re talking about wanting to learn new coping skills or learn how to quiet down their mind, they might be referred to the healing journey program. it could be that they’re having financial challenges and they need a bit of financial coaching or support.”
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essentially, cancer support programs are not a one-size-fits-all approach, but rather are tailored to the individual and their unique experience beyond treatments and the physical aspects of the disease.
for those who don’t know where to start, laura recommends beginning with a first point of contact, whether it be a social worker at the hospital, a member of their care team, online at any number of patient organizations geared toward different cancers, or by contacting organizations such as wellspring.
“people really talk about the cancer diagnosis being pretty devasting and pretty overwhelming and as they live through this experience, sometimes the aim is a cure and sometimes it’s to help them live as long as they can with a cancer diagnosis that can’t be cured and each of those scenarios a person has to sort through a whole bunch of emotions and it’s sometimes really important to do that in a community because to do it alone, we can get kind of lost in our head and lost in our thoughts and lost in big emotional responses like fear,” she said.
“when we come together into a support group, that shared experience normalizes things like those fear responses that our body just naturally has to a life-threatening illness, and … suddenly they feel a bit more calm and connected and supported.”
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according to caroline, having those connections is about feeling less alone, and when you feel less alone, it’s a lot easier to go through.
“we’re all on this journey, and most people are looking from the big cruise ship up above, and we’re down in the dinghy, and the big waves are coming and crashing, and you want a friend just to sit in it with you,” she said.
june 26 is national cancer wellness awareness day. to learn more about cancer support programs with wellspring, you can visit their website.
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