Helping the family of a cancer patient

On a comment thread I participated in recently, a woman asked how she could support her good friend who has cancer. Here’s my slightly-edited reply with more of my personal experiences added:

Long comment ahead. Perhaps a bit rambling, but I hope it helps. I was 11 and my sister 9 when our mother was diagnosed with brain cancer at 42. It was a very dark period of my life, although thankfully, she came through it (not unscathed, but in relatively good shape) and is still here kicking ass at age 61. I hate thinking too much about 1998, but I know one of the “gifts” I got from it is a much deeper understanding of what people feel and need, and how I can provide.

So… because of my experience, I immediately thought of your friend’s children. No matter how old they are, they need help – even if they’re old enough to drive, they could use someone taking them out for dinner (for a change of pace) or getting them school supplies or gas money (they’re probably scared to spend much money on themselves.) But younger kids REALLY need it. The little ones could use babysitting or just a “visit” with you. Take them out to ice cream or to the zoo. People did that for us and it was very appreciated. We were old enough that we didn’t need constant supervision, but with my mom in the hospital for months and my dad working full-time, family friends who lived down the street from the elementary school had us come over every day after school. We did homework, ate dinner, and hung out there until our dad picked us up after work, usually between 7:30 and 9 pm. Sometimes the teenagers in the family would bring us to their marching band or color guard practice, which we thought was cool. I still consider them a second family. My friend’s mom picked my sister and I up for school every morning so our routine went more smoothly. That summer, a few parents rotated picking us up for 4-H drama practice.

I was a 6th grader and a pre-teen at the time, just starting puberty. That MIGHT be the worst time of all for this sort of thing to happen. (Can’t compare it, since I didn’t experience it again until she had a relapse when I was in college.) I didn’t wear a bra yet and was scared that if I didn’t get one before my mom’s big surgery (after which she had to recover for months and re-learn how to do almost everything), I’d become the laughingstock of the school. I was too nervous and shy to ask my mom, but thankfully she anticipated all this and took me to buy some a few days before her surgery. She had already told me what to expect with periods, and I knew where her pads were. (I didn’t get it for another year, as it turned out.) But some girls might not have that preparation and it might get lost in the commotion, so if it’s appropriate and done sensitively, it might be good to pass along age-appropriate supplies and information.

In college, I babysat for a blended family – the woman who hired me took care of her nieces along with her own daughter, since the nieces’ mother (her sister) had just died of cancer. The oldest one was 13, so I gave her more freedom than the younger ones. I came into her room one day and she was crying because she had painful cramps and couldn’t find her pads and, well, she was 13 and had lost her mother. She was embarrassed, so I handled it gently without any stigma. I told the younger girls we were going over to my parents’ home so I could get some stuff I’d forgotten, and I had them play outside with the dogs while I gave the older girl some medicine (approved by her aunt) and some of my own supplies and told her a few ways to reduce cramp pain. I also encouraged them to be expressive and to interact with art (paintings, movies, music) and nature, which I believe helped them quite a bit over the time I knew them. (I lost touch with the family later, but I recently reconnected with them, and the kids are all bad-asses. The older girl now has green hair and works at a cozy coffeehouse in my neighborhood and is involved with art and radical politics. I’m so proud of her!)

Back to my own experience, one thing I did NOT get was trips to the library or to go shopping. Those places were just a little too far away, and across busy roads, for my parents to allow me to walk to alone. This was before the internet was much of a thing – we didn’t have it at home, so my main source of information was the library. I’d been a book addict since birth. It was seriously upsetting that my mom couldn’t take me to the library and my dad either couldn’t or just wouldn’t (a bit of both.) I cried about it many times. By that last semester at the elementary school, I’d read practically every book in the school library. One problem was that even if I could check out books, my dad said we might not be able to return them on time. (I think around that time, I learned about the renewal hotline, but for some reason that was deemed “not enough” either.) My mom received some books as presents from friends, and I read them voraciously. My father freaked out about money (more than necessary – he was already a very anxious person and often tried to solve problems by attacking something unrelated) and cut our already-small allowances. We kept on growing, but he said we were being frivolous and selfish when we asked to go shopping. My classmates laughed at me for wearing flood pants. My sister and I are now both slightly addicted to shopping, and we both own enough clothes for probably 5 women each, and we both trace a large part of that to our dad shaming us for wanting/needing to go shopping. So if I’m ever in a position to do so, I will take kids in similar situations out to buy clothes.

I can’t speak for all kids, but I was happiest when my mother’s situation was acknowledged and wasn’t draped in dramatic, tragic tones, but was approached in a more matter-of-fact way, while still being gentle and caring. And also when people (kids and adults) just let me be a kid and talk about my own life (school, friends, Girl Scouts, hobbies, pets) and didn’t push me to talk about anything in particular. I’ll never forget laughing on the playground during recess, then my so-called friend M. scolding me. “Why are you laughing, Kati? Your mom has cancer! She could die!” Mercifully, few other people imposed their ideas on how I should act. Then there was the day my sister and her best friend came up to me before lunch. They were upset because a boy in their class had said, “At least my mom’s not pregnant [the other girl’s mom was]… or BALD!”

I told them I’d take care of it. After lunch, I found that guy playing soccer with most of our class. I walked into the middle of the game, said sarcastically, “Hey Mark, I heard you were talking about my mom,” and punched him in the stomach. He doubled over, maybe even fell. I walked away calmly, head held high, and rejoined my friends at the swings. If my teachers saw, they never said a thing. In fact, no one ever spoke a word about it to me, even though a large chunk of the 4th, 5th, and 6th grades witnessed it.

I got very good at keeping things close at that age, because everywhere I went, some adult was asking me in dire tones how my mom was doing. I wanted to hide every Sunday at church, even though there were so many people there who truly helped us. (Giving us meals, cleaning our house, driving my mom around, talking to my dad, etc.) We were under an intense microscope. My sister and I missed school one day to wait on news about our mom’s surgery, and our whole gifted and talented cohort (~80 kids spread out over 3 grades) made us cards that our classmate neighbor dropped off after school. It was genuinely touching. Most were very sweet, and the best were the funny ones (intentionally or otherwise), like my friend who wrote down all of the day’s hot gossip along with her sarcastic takes on all of it. I still have those cards. And my mom had a friend who had moved to a small town an hour away, but she mailed my mom a card EVERY DAY for months. They were often the highlight of the day, because she had a great sense of humor. My mom kept all of those as well. I doubt there was a day without cards in the mail from January to July that year, and it was really appreciated.

A few other random things: Schwann’s meal trucks came in handy for us. Now there are so many convenient ways to get food to people, so keep those in mind. Making sure the pets are getting their vet appointments in and getting walked, if needed. Seeing if the yard, car, or house needs any work. Being a warm, reliable, helpful presence the family can rely on. Anticipating needs and not just waiting to be asked (although also, not being pushy or doing the exact thing someone else did – if everyone brings over meals, the freezer gets full.) If appropriate, handling some of the care of the sick person; although I was happy to help my mom and learned a lot about my capacity to give… the less caretaking the kids have to do, the better for the family dynamics. Maybe even being the person who posts updates on a site like Caring Bridge or Facebook so the family doesn’t always have to be the ones communicating with and reassuring others. Our teachers and our friends’ parents arranged rides for us so we didn’t miss back-to-school meetings or other evening events. My sister’s teacher had us spend the night at her house. Her daughter was our age and they had a reallllly nice house (her husband had a high-paying job), so we had a blast. Also, my sister and I have always been very close, so we supported each other quite a bit. Hopefully there’s some of that in the family.

I’m sure there are a lot of resources out there, and so many people who want to help. With some organization and focus, you will help your friend and her family so much.

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