going back to work after cancer: how support programs can guide the way
8 minute read
matt van engelen, here with his wife sydney and son davey, worked during chemotherapy for blood cancer. but when his cancer returned and he went through a stem cell transplant, the recovery was more difficult. he had to take a leave from his work and joined the wellspring program for support to make a graduated return to his job.
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this article was produced by the healthing editorial team with the support of a grant from wellspring cancer support. while wellspring made the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
at 3 a.m., matt van engelen was sitting on the couch with his wife, sydney, and having severe back pain. she insisted he go to emergency to get it checked out. he did, but certainly wasn’t prepared for what came next.
he had cancer.
“i was diagnosed with diffuse large b-cell lymphoma. it was only caught because i got an x-ray done at the hospital for some back pain. it actually was a pinched nerve, but the lymphoma popped up on that as well,” he says of the imaging results.
this was in 2022, when his life in toronto was hectic at home and work. his son davey was only a toddler, and matt, now 42, had a demanding role as a google administrator supporting the financial and creative teams at an online investment service. he was worried about managing cancer treatment on top of everything else.
unexpected diagnosis: diffuse large b-cell lymphoma
diffuse large b-cell lymphoma is an aggressive, fast-growing blood cancer that affects your lymphatic system, the network of organs, tissues and lymphatic vessels that helps fight infection. the disease compromises immunity and can cause weight loss, night sweats and fever.
early detection opens the door to effective treatment, as in matt’s case.
“they scheduled ct scans and a bunch of stuff after that. it all happened very quickly,” he says. chemotherapy started right away, with an in-clinic treatment every three weeks for four-and-a-half months. he went in for treatment on a wednesday and would take the thursday and friday off work to recover, but he was able to continue working throughout the course of his treatment.
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“my employer was very supportive in general. i told my boss what was happening and he said, ‘whatever you need.’ once i realized that i could keep working through treatment, it wasn’t a problem. they just gave me two days off every few weeks to handle recovery. i would work the next three weeks as if nothing had happened.”
getting support from his employer during chemotherapy
managing work responsibilities while going through cancer isn’t easy, but matt had the benefit of a supportive employer and the ability to work remotely from home—a smoother situation than others who have to negotiate work leaves and insurance coverage, and so on, struggling to hold onto their jobs (while facing the underlying fear and uncertainty of cancer).
matt’s cancer went into remission, and he was “pretty fine” until january 2024. he was focusing on a significant work event, letting his health take a backseat. “i finished the event and the very next day i was home vomiting and stuff like that. i thought i had norovirus.” he went back to the er only to learn that his lymphoma was back. it had nothing to do with his recent push at work, but explains that the lymphoma had a reaction with his spleen, which was becoming oversized and crushing part of his gi tract. only a month earlier, he had gone in for a checkup and all was fine—that’s how aggressive cancer works.
this experience was far different from the first. he spent two months in the hospital for salvage chemotherapy (often used when standard chemo will no longer work) and then for a stem cell transplant.
“that treatment really destroys your body, so it was extremely difficult to recover from that,” he says of the transplant. not only could he not go back to work, but he also couldn’t even spend time with his family. “i couldn’t be in the same space as them because my toddler was in daycare (and might have passed on a virus). my wife had to take care of my toddler, so she was often carrying whatever he had, so we couldn’t be in the same space together without wearing masks for many months.”
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wellspring returning to work program offers expert guidance and group support
he previously had joined a lymphoma support circle with wellspring, a canadian organization dedicated to helping people with cancer and their caregivers and families with a range of free programs and services. someone in the circle mentioned the wellspring returning to work program, a six-week virtual education series that can feel like a lifeline for people who are worried about financial stress and job loss. he decided to go through the program and now encourages others to do so as well for the guidance, practical steps and encouragement.
many cancer survivors want to return to work, but it’s not always straightforward because of ongoing health issues like brain fog and fatigue, and a lack of accommodation in the workplace. a study in alberta from 2022 published in current oncology found that returning to work is among the top three concerns for people living with cancer.
ilene shiller, a social worker with deep experience in oncology, leads the wellspring program. she says the practical learning and group discussion format go a long way to address concerns and build confidence.
“in the very first session, we talk about the challenges, what are you concerned about? people will talk about stress or ‘i’m still having this side effect or that side effect, so am i going to be able to do my job?’ but then we flip the discussion and we say, ‘okay, hold on here. what are the benefits of work?’”
even participating in the program is a sign of healing and recovery, she says.
“it’s like, ‘look at what i just got through and i’m ready to move forward.’ what moving forward looks like is different for everybody.”
how do you prepare for returning to work?
the program tackles the fundamental question: how do you prepare for returning to work? you may have been away for a number of months or over a year while work processes, technology and colleagues have changed, for example. the series covers the communication skills needed to talk to your employer and, if applicable, your insurance company, and understanding your rights to disability benefits.
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there’s also guidance on how to deal with co-workers, manage workload and make time for self-care.
“self-care is a big one and we spend a whole session on it,” shiller says of the much-needed focus on being kind to yourself. “what if this situation comes up? how can you prioritize self-care? people report having difficulty multitasking where they used to be able to do 42 different things at once, and now they can’t.”
focus and concentration can be difficult, as well as neuropathy, the tingling pins and needles in hands and feet that can happen after certain types of chemotherapy, she notes.
one strategy is learning to relax when you need it most.
“the beginning of each session starts with a breathing, focusing exercise, getting people to centre on the breath as a way to induce a relaxation response. and the hope is that it’s a very portable tool. if you’re having a bad day at the office, you can shut your door and check in with yourself by focusing on the breath.”
the series also outlines what accommodations would be helpful to make the transition back to work smoother, like a graduated return or job shadowing to get familiar with job responsibilities.
beyond the physical and cognitive side effects of cancer, the program offers a chance to talk about the emotional part of living with cancer, shiller says, which should never be overlooked.
“what often happens is people get diagnosed, the adrenaline starts kicking in, you’re running to appointments, you’re getting tests, you’re having side effects, and it’s only when the treatment stops that somebody says, ‘hold on, what just happened?’ that’s when you start to process the emotional part of the diagnosis. so people need that recovery as well.”
for matt, the challenge to heal and go back to the job was more complicated than he expected. he went on long-term disability for eight months, which is the longest he hasn’t worked since he was 15.
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“it’s not like i had eight months where i could play video games and do whatever i wanted to. i couldn’t even hang out with my family,” he recalls of being bored and isolated from his family and friends.
managing work expectations and starting slow
he returned to work on a graduated plan that he built using the help of the program: “they helped me figure out how to speak to my insurer and hr department and set everyone’s expectations correctly.” another practical step was preparing by getting dressed and sitting at his computer for longer periods, instead of “in pajamas all day.”
“a big part of recovery from that sort of treatment is getting your brain back into gear. so brain fog is a common side effect for chemo patients. i’ve been an it professional for 15 years now. i know all the acronyms. i know how to manage networking. so brain fog was a real problem. i would come back to work, and i would try to remember things i was working on or common acronyms for hardware and software that i work on. i couldn’t remember what they were called. i couldn’t remember how to describe them.”
that’s where the program also benefited him by encouraging open discussions with managers about some of the common challenges post-treatment. over time, those mind blanks started going away, but the support and understanding of colleagues were key.
going through cancer treatment has also given him insights into balancing work with his personal time.
“it is important to be able to support yourself and your family through these sorts of things. for the first time ever during my relapse, i had to have a conversation with a healthcare cost specialist, which was shocking. my insurance was good enough that i was covered. she was like, ‘some of these drugs are extremely expensive and we need to find funding if you need it,’” matt says.
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“but really, what’s important is like i cannot tell you how much i missed just sitting on the couch with my son, watching him do whatever it is four-year-olds find interesting. my biggest takeaway is to enjoy your family time as much as you can.”
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