I was wildly unprepared for parenting with a cancer diagnosis

I was wildly unprepared for parenting with a cancer diagnosis

By Ryan Blenkiron

By my first chemo, I was completely winging it. And I’m not alone.

Photo by Scott McQuarrie

Parenting through cancer – diagnosis, treatment, and now recovery – has been the single-most challenging part of my journey. I’m a planner, so at diagnosis, I wanted to find a free day-by-day report online about how much energy I was going to have between treatments to spend on being a good mom. With that information, I could plan supervision and homework and birthday parties and extracurricular activities. Perhaps I could coordinate playdates and coffee dates around it all?

I never found the all-revealing report I desperately sought. However, I did get empathy from those who had been where I was, confronting a monster of a disease that gnawed on my body while still wildly responsible for other, usually small, human beings.

It’s important to note that parenting and kids can be a sensitive topic in young adult cancer communities because of the high rate of infertility among its members. This means finding information around what to expect or to find a place to commiserate with others on this particular topic can be challenging.

Hard-earned pointers about parenting through cancer:

One size does not fit all. Before you have a deep experience in the cancer world, you think you know something about it, but trust me, you hella don’t. There are so many cancers and each one requires a fairly unique treatment protocol (this is why I never found that step-by-step report). To get more specific, some medications ramp you up (hello, five-day steroid sessions) and others make you nauseated (but maybe not), and some just downright cause pain and suffering (but your skin might be like, really clear). Maybe you can get your chemo in a recliner for four hours, but maybe you’re required to take it over five days as an inpatient, or maybe even you get to finish treatment at home with a squeeze bottle of chemicals connected to your IV. Radiation appointments can be daily for weeks. Surgery has its own bag of unique and sometimes surprising recovery quirks. Families come in all shapes and sizes and that means some parents will have a spouse as a supporter and some won’t. There’s no magic formula (sorry!) and everyone’s experience will be different.

Physical limitations and energy levels can be unpredictable. This is true of any treatment, and these effects can last a long time. Surgical recoveries restrict you from lifting, which includes lifting your small children. When your neutrophils are too low to protect you from illness, you’re stuck at home. Blood can clot around your PICC or port sites. Radiation burns restrict movement, hormone replacement can throw you for a loop, and if you have plans to crochet in your downtime, neuropathy will change that.

My own chemotherapy was the R-CHOP regimen, and this is ultimately what my three-week cycle looked like:

  1. Chemo day was a write-off for a few reasons. It took up half of the day (blood test, wait for results, four-hour infusion) and the allergy meds made it hard to stay awake. The IV drugs remain in your body for 48-73 hours and come out by way of bodily fluids including sweat, so this is not a good day to be handling your kids. I felt incrementally more nauseated for 24-48 hours after each chemo session.
  2. I took high-dose steroids each morning and night for the first five days. My mind raced fast AF and my energy was up for days two to six. I also craved carbs and cheese (i.e. pizza). If you can, this is the time to get things arranged for the next two weeks.
  3. Then I crashed. I hid from noise and slept for at least five to seven days. I took “Netflix and chill” to a whole new level, and often didn’t have enough in me to even do the Netflix part. This is hard to do successfully with kids. I learned to take things easy during this span because forcing myself to parent, do housework, or even put energy into a cognitive task for too long would slide me backward on the energy spectrum.
  4. As my blood counts improved, so did I. By the third week post-chemo, I had a little energy I could spend on being as present as possible for my family.
  5. Rinse and repeat. Expect some effects to be cumulative and increase with each round of chemo.

Chemo brain is way worse than baby brain. This is something that non-cancer parent friends just won’t understand. At one point, I lost all concept of left and right. Easy math wasn’t so easy. Helping with homework was hard for a while. Chemo brain prevents us from consolidating memories and messes with our memory recall. In the moment, explaining or describing something simple becomes impossible to orally sequence. Over time, things you would normally remember don’t seem to stay. The phenomenon is also called brain fog or chemo fog, which is the perfect description. I still can’t conjure up accurate memories of that school year, that Christmas or other special days close to treatment. Take notes and take pictures, dilligently.

Accept aaaaalllll the offers and ask for aaaaalllll the favours. This is a hard one because we’re all stubborn animals. Especially when it comes to caring for our families. But if you step back, you’ll see that there are several ways others can help you because it doesn’t matter who does it,  it just matters that it’s done. Accept or ask for things like videotaping the school concert because you’re immunocompromised, transporting your kids to school/daycare, managing the kids’ calendar, housework, bringing meals, being on-call for unpredictable moments, organizing a diaper drive, hosting playdates and sleepovers, hand-me-downs, distractions for the kids (or for you from stupid cancer, those are always great, too). You get the picture. Put your pride aside and accept or ask for these things! Or at least ask for someone to fundraise the money to hire these out.

If you have a spouse that is taking on majority of the parenting, ensure they accept and ask for help as well. This can be an incredibly stressful time for them and their self-care is of utmost importance to avoid burnout along the way.

My family had help during treatment with childcare and cleaning, and I regret not asking for more after treatment finished and I was in remission. My oncologist told me chemo drugs continue to work systemically for at least six months after the last round. This means I was setting myself up to fail at recovery when I or anyone else assumed I was ok to resume shouldering my fair share of family life (physically and mentally) as soon as my scans came back clear. Hang on to the help so you can transition into your own new normal.

Photo by Scott McQuarrie

Spend your energy on what only YOU can do. Like reading before bed, or kissing boo-boos, or building LEGO sets. My oldest would climb into bed with me and we’d talk about evolution and science-y things. Focus on giving your kids what no one else can. Saying no to making their lunches (for example) allows you to say yes to spending quality time with them when your energy comes at a premium.

You will feel truant, guilty, and terrified. You’ll fall asleep in the middle of your first-grader’s description of recess. You’ll spend time away from the rest of the family, even if you’re in the same house. You’ll miss Cub Scout camping trips and dance recitals. You’ll dip your toe into terrifying thoughts of possible future scenarios. You’ll contemplate how you might leave your legacy for them – recorded lullabies, letters, gifts, lessons. My only advice here is to let yourself feel these things, sit with them and accept them. Then go spend time with your kids.

Other parents in the Young Adult Cancer Canada (YACC) community made it clear to me that handing off day-to-day responsibilities allowed them to spend their precious energy on their kids instead:

“I found I needed the most help with just the day to day things that took time. When people would help do the school runs, that was amazing because just the back and forth to the school was exhausting. Or people helping with meals for my family, that was huge! Without that help, I’m not sure how I would have gotten through it.” – Lauren

“Recovering from surgery I couldn’t get out of bed for the first few days, then after that, I could move, but slowly. I couldn’t lift them, couldn’t play, etc. My stepmom would come over in the morning when my husband went back to work just to play with the kids and get them out of the house. By lunchtime, they would be tired so we’d watch TV and snuggle. It worked for us at the time.” – Lisa

“I had a lot of daycare pick up days after chemo where I really should have been home in bed. I don’t know how I was able to get dressed, drive my car to pick up my toddler pick him up, put in the car seat, etc. As a mom, we just force ourselves. We don’t have help for day to day. Over time, we are building a better support network thanks to new friends/neighbours who also have kids. For example, my neighbour’s son and my son are in the same school now and they could pick my son up.” – Alyssa

“I get some help with childcare on the weekends and such, but I wish I had help with things like housekeeping/cooking. Then I’d be able to use my energy on playing with my toddler instead of just lying there half the time while she crawls on me, or worse, passing her off to someone else so I can rest a few minutes because I used up all my energy during the day on stupid housekeeping. I feel like a shitty parent 90 per cent of the time these days because my energy is just all gone.” – Valerie

“When I was going through my battle, my son was turning six. I needed help the most with meals, and taking him to and from daycare. Having meals prepared for me would have made things a lot easier for me. I didn’t have the energy to stand for more than 15 minutes at a time. My partner worked 12-hour days, so it was an argument some days on why supper wasn’t ready.” – Andrea

“After surgery, I couldn’t take care of my son as he still needed help getting dressed, etc., so it was another week or two before I could resume my normal mom duties.” – Chantal

“Getting the kids watched when I’m not even capable of caring for myself was — and is — a big thing. Transportation to school and daycare was, and is, a big thing, as well. It’s hard to get the kids to school when you can barely get out of bed or you’re en route to treatment. Another help was food. I couldn’t cook for various reasons, so people making meals or giving gift cards to restaurants help immensely.” – Julie

 

I think the point here is that there’s no way to do this part of cancer “well.”

Even though some of us think we can reduce the impact of cancer on our personal lives, we just end up negating our self-care. Cancer as a young adult often means that there are children affected. Those of us who have been in your shoes are here to tell you that it sucks. Maybe right now, you’re still so new to all of this and it’s hard to imagine how your kid(s) will feel or what kind of parent you’ll be. Do yourself a favour and try to see the situation from their point of view; kids don’t expect a lot, really. If they are safe and cared for, they can adjust to almost anything. It’s our own expectations of ourselves as parents that implant guilt and cause us to decline offers of help.

I sought the information above soon after diagnosis, and didn’t find it. I felt wildly unprepared to parent with a cancer diagnosis. Now I understand it’s not something you can calculate, nor is it an art to master. It. Just. Is. Luckily, all you have to do is try your best and drop your expectations.

 

This piece was originally posted on Medium.com.

 


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