Experiencing mental health |
Fear |
“Going through the treatments, I always think about whether or not they're working […] I think about that all the time… the uncertainty and fear, that's what keep me up at night. I feel like the fear is never going to go away, it's just always on my mind.” (Participant 21, treatment) |
“Now that I'm past the treatment part, I'm better but there's always like the anxiety, like, you're scared the cancer is going to come back. I'm still being monitored, but with the statistics, I'm scared, I feel like it will come back. I just don't know when, if it's going to come back in five years, or in two years, or in ten years. Nobody knows.” (Participant 20, follow‐up) |
Emotional responses |
Shock |
“Getting diagnosed, it was a shock. I went into full on panic mode within myself.” (Participant 27, treatment) |
“I've always been in good health, so it was shocking… I spent two months pretty much lying in bed, just not really believing the diagnosis was real.” (Participant 18, treatment) |
‘Scan'xiety |
“It's these tests… they really wreak havoc on the whole mental health. […] The constant worry and fear of what the results would be leading up to [the scans] really took a toll on my mental health and well‐being.” (Participant 19, beyond) |
The stress and worry are so high around those scans that it's very hard. Because it takes so long. It takes like three weeks to get confirmation. The fear of waiting, so you're just so anxious and miserable that you just want any closure as soon as possible. (Participant 25, follow‐up) |
Confusion |
“The thing is they say you go back to life as normal. But that's not the case because to me, life changed after having gone through all this. And you don't know if it's going to happen again. When is it going to come back? It's always in the back of your mind. But everyone around me doesn't realize that. They all think I'm cured. Everybody thinks you're cured. That's it. They think you got to go back to live life as normal and how it used to be before. But things are not normal.” (Participant 11, beyond) |
Cognitive‐behavioral responses |
Coping |
“You don't necessarily have time to process what's happening to you when you're in active treatment.” (Participant 17, follow‐up) |
“We don't know how to process through this time [of active treatment] because we're just focused on trying to survive.” (Participant 26, follow‐up) |
Processing |
“For many of us, this [follow‐up] phase is when we finally have the mental space to start thinking about ‘what happened to me?’ This is the time where we actually process our experiences. A time where I can actually recognize my emotions and feel the emotions that I was likely just trying to avoid before because I had no mental capacity or energy to address them before.” (Participant 24, follow‐up) |
“In this year following my treatment completion there's been a lot of processing and grieving for everything that did happen that I couldn't process while it was happening. I realized the roller‐coaster of a journey that I went through. […] I felt waves of anxiety and mood changes… all these changes to my mental health emerged when I was processing.” (Participant 25, follow‐up) |
Adapting |
“There are some significant, permanent changes to my body system. There's definitely changes in what we used to consider normal for us. Even catching an early ferry, I'm anxious and don't really think I can do it because of frequency and urgency early in my days, which is new for me because of this cancer.” (Participant 15, beyond) |
Receiving care for mental health |
Sources |
Processional |
“The free ones from [the cancer care center] gives you six sessions and then they wash their hands after. But unfortunately, going through diagnosis like this is not a six sessions turnaround situation. So sessions were not that helpful, they were not enough. They were rushed which made it hard… they don't really get you to understand what your feelings really means. […] This needs to change within the system.” (Participant 13, follow‐up) |
“My GP was very compassionate. When I got the CRC diagnosis, she actually called me to see how I was doing. When I was hospitalized, she even came to visit me when she was on her shift. That was very nice and made a difference.” (Participant 21, treatment) |
Family |
“It was just my family and immediate family have been very supportive… things were far too overwhelming, but my husband has been a rock. My mother, and my husband's parents as well… they have been a huge support, looking after a 5 year old and picking up slack, and that kind of thing. So I would say more so just family support kept me fairly mentally stable.” (Participant 12, follow‐up) |
“On the personal side, I have an incredible support system. So husband, daughter, sisters, friends. I could've made it through without them, but it would have been a lot harder. So definitely you can say my mental health has improved because I had these people along. I felt very supported by friends and family.” (Participant 10, follow‐up) |
Community |
“Just knowing others and being in the same room with them is really therapeutic. Just knowing that everyone understands the particular kind of situation is really valuable and very validating… these groups even kind of normalized how I was feeling.” (Participant 25, follow‐up) |
“There's a lot of information, a lot of stories of support but also all the stories of everybody else's tragedies. So you need to be careful about going into those spaces for your own mental health, because it can be very depressing. It can be very hard.” (Participant 4, beyond) |
Access |
Privilege |
“The way our health insurance system is set up, it's a huge blocker for a lot of mental health services that gets partitioned into being covered. This is a piece that is very difficult for folks. Then you might just turn to other avenues, like private ones. But then there's the cost aspect that prevents a lot of the access. If you don't have access to these services, you won't even be opened to trying these services because you're just worrying that you can't possibly pay for them. This just contributes to the worry and the anxiety we already have, and sometimes the symptoms just get worse. So I definitely think the financial impact is a barrier to care.” (Participant 24, beyond) |
“So far, I've had great care. I have no negative comments about the care I've received. I've had a supportive [medical] team and my oncologist has provided me with the support I needed, even referring me to a social worker. I wouldn't have known there were [mental health] services available for me here if I wasn't referred. So he responded to my physical concerns and was also opened to listening to my mental health concerns. But I know a lot of other patients don't have the same experience as me. And I find hearing a lot of their cancer experiences very different than what I had because my experience has been very positive compared to theirs were quite negative.” (Participant 9, follow‐up) |
Scarcity |
“Now that I'm done treatment, I have a lot of questions. But you can't get a hold of [healthcare providers] anymore. I've called the cancer care center and left many messages. The secretaries call back and will give you one‐ or two‐line answers. Nobody gives you answers. You just get left in the dark after. There was no follow‐up, but there has to be some sort of continued care, not just scans and tests every few months after you finish your treatment. There should be continued care from them about like, “this is where you can find resources to help with this and this symptom.” Or anything. They all just keep you so much in the dark about everything that it's even harder on your mental health once you start realizing how much they're keeping you in the dark.” (Participant 13, follow‐up) |
“The aftercare piece is really where you feel the healthcare system fall apart. Those mental health issues still exist for people but there's just not enough resources because you get cut off from the system and then you don't have access to things anymore. Because you can only see a psychiatrist when you're in active treatment, or you can only get a social work referral up until these many months since your last appointment. There are different kinds of system blockers. But this is the time when most people would start accessing mental health support because they have more time and energy to put into that realm.” (Participant 24, beyond) |