Chemotherapy

Parent Cafe
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I am hoping some parents will (unfortunately) have some experience with helping someone who is going through chemotherapy.

I will be traveling next week to help my sister, who completed her round of chemo for stage four lymphoma last week. She has three teenage children and I offered to fly down and be housekeeper and do whatever I can for her for a week. I’m not sure what to expect. She will return to the hospital for round two a few days after I leave.

I know that just having someone there to cook and clean will help her husband, but I’d love to be able to help her directly in some way.

I’m just not really sure what to expect and would appreciate any guidance.

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This should be in Cafe. I’m sorry. Could moderator please move?

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(Assuming this reply will be moved with the thread)

My SIL had surgery/chemo, and her sister came to stay with her for a week. Don’t minimize the value of being there to cook and clean, as well as look after the kids, answer the phone, and run errands. I know that my SIL appreciated it very much that her sis stepped in to do all of that. It took a great load off her mind, knowing that all of those things were attended to, and she could just rest.

The sister is a naturally bubbly person, and I think it helped all of them to have her cheery presence in the house. So if I had any advice, it would be – not to be falsely cheerful – but to access that side of your personality which is light. Don’t get drawn in to any gloom or apprehension there may be. And maybe take the kids out to a movie or something fun once or twice.

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Agree with LasMa. Be as cheerful as you can. Otherwise make it okay for her to just lie there if she needs to without the need to attend to things around her. Also keep in mind that her immune system is down so keep anything or anybody in contact with her as germ free as possible. If others stop by, ask them to wash hands and disinfect and preferably no hugging and kissing. Nobody with any illness should stop by. You’re an awesome sister to do this.

5

I was fortunate enough not to need chemo; I needed only radiation. But a good friend went through chemo several times.

Here’s what I learned from her:

  • She was frequently VERY nauseous. And the chemo effects seemed to be cumulative, each treatment made her sicker than the one before it. The things that helped her most were the things normally recommended to combat morning sickness-- saltines, the preggo pops, any of that sort of stuff. Why not bring along a variety? You can make a joke about it, but I bet they make a difference.
  • She was always cold. So think fuzzy socks, anything that would keep her warm. Particularly given the kind of winter we're having (at least her in NY), think warm! Is her house drafty? Could you find a great fleece throw or something she could use while she's watching TV or at the hospital? One of those under-the-door draft blockers?
  • Is she at the point where she's looking at wigs? (My friend was advised by someone to look well before one was needed, so the transition was be fairly seamless.) Would you consider a girl's day out, shopping for the perfect wig? You can make it very lighthearted and fun, include some off the wall fun try-ons. If her teenage daughters would want to be included, and could keep it lighthearted, consider including them... or give your sister the choice. And again, when she wasn't wearing her wig, her head was cold. Look for some comfortable hats--think fabrics like fleece that are soft. I imagine you can google "personal supplies for chemo patients" or something similar to find what you want.
  • Be there for her kids. Ask them about school, offer to drive them where they need to be. Offer to take a bunch of their friends ice skating or something. As a mom, when I got sick, my overriding concern was my kids and how my illness would effect them. Any normalcy you can bring to their lives while you're there will be the best gift you can bring your sister.

-What helped me get though the roughest days when I was sick was, believe it or not, plans for a Disney World trip that summer. Somehow, knowing that we had reservations meant that things would be better, and that things like restaurants and ride waits would be all that mattered. While I don’t suggest you buy plane tickets, maybe you can get her two gift cards for manicures or something.-- one to use while you’re there, and one to hold on to, to celebrate the end of her chemo treatments. Or start talking about the family reunion you’ll plan when she’s well and able to attend. Take a little of the emphasis off how awful NOW is and put a little on how great normal will be down the road.

I’ll keep your sister in my prayers.

6

I’ve been there, done that. Bjkmom’s advice is very solid, so I’ll just add to it.

The most debilitating side effect of chemo for most people is extreme fatigue. I used to say that everything felt like an extra level of difficulty. Walking on a flat surface felt like hiking uphill, walking up a flight of stairs felt like running stairs. I went into chemo a runner and by the end couldn’t walk a half mile without resting.

Some people experience nausea, some don’t. I was lucky enough not to have any, but I also had no appetite and lost a ton of weight. Chemo often causes “metal mouth” which makes things taste off. During chemo chocolate, one of my favorite foods, tasted like dirt to me. If she drinks tea a good ginger green tea might be a good gift. Some people get mouth sores so hot spices are generally out.

Most people start losing their hair shortly after round 2 of chemo. Your sister may want to shave her hair in advance or as soon as the shedding starts. Does she have a good electric razor? A trip to the wig store is a good idea because it’s helpful for the consultant to see what her current hairstyle looks like.

If you do buy her a hat remember that a head without hair is substantially smaller than one with hair. My pre-chemo hats were mostly too big to wear once I lost my hair. Fleece hats are great because they’re soft and can hide a bald head.

One of the best things you can do for your friend is just listen and take your cues from her. She’s probably still processing a lot of this, so giving her someone to whom she can talk and who won’t judge her is a great gift.

Chemo messes with your sleep cycles so she may be sleeping in an odd 24-hour schedule. I would sleep for 2 or 3 hours at a time, falling asleep at odd hours, then be unable to sleep more.

I might hold off on the manicure. Chemo patients have to be very, very careful about infection. One cut cuticle probably wouldn’t be a problem, but with all the things she has to watch out for she may not want to risk it. If you’re thinking of helping her out with a trip make sure to check in with her or her husband about the course of treatment. If she’s doing neoadjuvant chemo and still faces surgery you’ll want to factor in recover time. It’s also possible she’ll have to delay one or more of her treatments if she gets ill or her white blood count drops too low.

Definitely offer to take her kids places. I was okay at the beginning of chemo but pretty much useless for anything active by the end. Be someone they can unburden themselves to. They may not want to talk, but knowing you’re there may help.

If she’s married, support her husband. Everyone focusses on the patient but people often forget about the partner and how scary this can be for them. Guys often have a hard time expressing their feelings, but if you ask open ended questions he may open up.

Don’t be afraid to laugh. Black humor got me through some of the worst of chemo.

Does she have an online help page? If not organizing one would be very helpful. The way it works is that you send out invitations to her friends and family to join and they get a link to a calendar on which you enter tasks she could use help with-rides to chemo, meals, dog walking, etc. She won’t have to ask directly and it gives people a way to help without having to be intrusive.

http://lotsahelpinghands.com

I don’t know what kids of chemo your friend is receiving, but here’s a page that might be useful. It’s from a breast cancer site but most of the advice would apply to anyone undergoing chemo regardless of diagnosis. There’s also a lot of good information on the kinds of thing to say and not to say. (Hint: “I’m so sorry you’re going through this”=good. “I know just what you’re feeling. When my SIL was dying of cancer…”=bad.)

https://community.breastcancer.org/forum/69

Feel free to PM me.

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Based on my own experience, I concur with the things that keep you warm, especially cute head coverings that don’t look like a sign screaming cancer patient. I hated the wig, but the wig store/counter also has small bangs and pony tails that can be used with turbans and caps to make it look like there is hair under there. These worked MUCH better. They are sort of hair extensions with velcro that attach to the scarf/turban/ball cap.

In focus groups I have run with teenagers who had a parent with cancer, they said that they wanted more control. Let them pick the dinners. Tell them you want to do something with them (give them a list maybe to get the conversation going) and let them pick. And the best idea was, if you aren’t visiting, but know a family like this, instead of making a meal to give the kids a coupon book for pre-paid pizza delivery. You might surprise the teenagers with this when you leave Neato (assuming mom and dad are OK with this).

Also, it sounds weird, but do take pictures that include your sister and others. She may not be taking pictures at this time, but assuming all goes well, and let’s think that way, it is a foggy time and it is actually good to look back on family pictures from that time. It wasn’t all misery. You kept being a family. You felt terrible but you all lived every day and it is nice to see some fun-times family pictures.

Finally what I wanted was to put my energy into my kids. Having people take other tasks off my hands (laundry, household repairs, administrative stuff) was what I needed to spend time with them. This was difficult because I like running all the details of the household, but I had to remind myself regularly to put the most important things first. Help her spend her energy on the things that will make her feel better about how she spent her day when she lies down at night. This might be worth talking to her about when you arrive, just so you understand what she wants to be doing with her energy.

Props to you for doing this. Everyone that visited me helped with the process. It makes a huge difference. Best wishes for your visit and speedy healing for your sister.

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Sue22 reminded me of a link that may help.

It is, surprisingly enough, on a Disney site.(And, no, you don’t have to be a Disney fan to join.) It was started by a group of women who were, or had, battled breast cancer, and is populated by people with a variety of cancer experience.

http://www.disboards.com/showthread.php?t=2833381&highlight=gagwta

It was a great place to get practical, hands on advice from people who had been in my shoes.

9

When my Dad had chemo for lymphoma, his taste buds changed. Foods tasted weird to him at times (DH also experienced this with his less toxic chemo for colon cancer).

So if she gags after taking a bite of a meal you spent a lot of time and effort making, don’t take it personal.

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Good advice, Delicate Arch. When I was sick friends kept offering rides for my kids but I always turned them down. Driving was one of the few things I had energy for. The car was a great place for me to connect with the kids and my being able to drive helped us all to feel a bit more normal.

The loss of control is hard on kids. One thing you’ll want to be sensitive to is not taking over the tasks they’ve found to help their mom. Mine craved ways to help me. I would sometimes ask them to do things for me even when I didn’t particularly need help because it seemed to help combat their feelings of helplessness.

While you’re there, if you cook, make a double batch. Some for now and some in 1-2 serving sizes to stow in the freezer. Her kids can reheat them for themselves when she doesn’t feel like eating.

Some ideas for when you go home:

Send her frequent emails that don’t require an answer. My favorites were the links to brainless silliness my teenager sent me from boarding school of the “giggling baby with hiccups/duck riding a pit bull/ stupid things Kanye said this month” variety. Even when I was feeling relatively normal and functional these were fun to get.

Send her cards or postcards. Anything that lets her know you’re thinking of her will brighten her day.

Send baked good. She may not be able to eat them but her kids will. My kids became very fond of what we started referring to as “cancer food.”

Send a fun book with short chapters. My favorite during chemo was Tina Fey’s “Smartypants.” I had the attention span of a gnat but that book kept me laughing.

Good luck, and kudos to you for being a caring sister. I remember fondly all the people who helped me through chemo and surgery.

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Thank you all so much. Wonderful advice. My sis is do used to being in control that I know this is is going to be very difficult emotionally for her. She is very used to the one fixing everything, a real problem solver. When I called her husband about flying down to help, it was with the idea that I could be a helpful distraction. I hadn’t thought about freeing her up to spend time with the kids. She will appreciate that.

As for cooking and cleaning, I was thinking of teaching the kids as I cooked and maybe even making a chore chart for the kids, (who aren’t used to doing regular housekeeping). So many kids just don’t even realize how much mom does for them.

Even though I’m so sad that all this is happening to her, I’ll do my best to be the goofy little sister / silly aunt and be cheerful.

Thank you all again for the wonderful advice. She is the first in our family to deal with this, so we are all a little unsure what to expect.

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I get what you mean about the “chore chart”, but be careful you don’t annoy them by treating them like 5 year olds. You might have a pow wow with them and ask if the can brainstorm ideas with you on how you can help their mom, and how they can help going forward when you aren’t there. That might be a good time to ask if they want to take turns helping you cook so they would have some skills at that when you leave (and heck, they might already know how mom likes some stuff done, and maybe they can help you do things in a way that is more "normal’ for them, whether that is how she flavors a pot of chili to whatever else). But regarding the “chore” pickup and tracking, If it is THEIR idea, it will go better. You might ask them how they want to keep track of or rotate any responsibilities they take on.

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^good point

That’s what I was thinking. I may have a better success rate simply because I’m not dad or grandma, but the Aunt they see once a year. I don’t want to be seen as take over or being miss bossy pants.

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Like your sister, I’m someone who doesn’t like to ask for help. What worked best for me was when people either made a request on my behalf or made a concrete suggestions of ways they themselves could help. I still had the power to say no but I didn’t have to ask for help.

For instance, if someone asked “What can I do to help?” I’d think, “Well I need dinner, but that too much to ask of someone so I’ll just order takeout, and I need more Immodium but I’ll stop by the pharmacy tomorrow when I feel better.” It was better if someone just stopped by and dropped off soup (which I could serve for dinner or save for another day) or said, “I’m going to the pharmacy. What can I pick up for you?”

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Maybe give a limited range of options of what you’d like to cook for the patient/family: I’m at the grocery and want to make a meal for you. Would you and the family prefer omelets, chicken soup or steak as the main course, plus a green salad? Too many choices and open ended questions can be overwhelming and they will just politely say, “We’re fine.”

My relative was quite nauseous with her last round of chemo and only wanted custard made by one friend in particular. She honestly couldn’t tolerate much else. We did eat together in earlier rounds of chemo and she was able to tolerate much more food. She also loved BAKED potato chips–her guilty pleasure. We would go down to the market and buy her small bags of it when she had the craving.

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Someone should compile all of these suggestions into a pamphlet for friends and family of cancer patients. Fantastic ideas!

Regarding how they’ll feed themselves after you’re gone – I love the idea of making a double batch of whatever you’re cooking and putting the extra into the freezer for next week or next month. Also, for this season, I feel like it’s OK if the standards fall a bit. While you’re there, you might want to pick up a couple of frozen Stouffers lasagnas, for example. Later, all they’ll have to do it stick it in the oven and whip up a salad, and they’ve got dinner, probably for a couple of nights. And TV dinners are worlds better than when we were kids. Stock them up on those as well.

My first experience of being responsible for feeding the family was when I was 15 and Mom was in bed for a week with a pinched nerve. (And of course, none of the males in the family could possibly handle it :wink: ) We lived on Hamburger Helper for a week. Not something you’d want to do for months on end, of course, but for the duration, it worked, and that’s what matters in these situations. You do what works.

Regarding being “Auntie Mom” for a week – great ideas for working with the kids to establish a routine. You’ll also want to be sensitive to their emotional needs. Be available if any of them want to talk or cry or worry aloud. (And of course, here you’d turn off the goofy fun aunt, and be appropriately serious but strong, while validating them.)

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I am a stage III cancer survivor, and a GF and I visited a fairly large wig store - I knew the chemo would take my hair at some point. GF was able to advise what wig looked really good on me. I decided to get my hair cut in that style, so when I needed the wig, the transition would not be noticed by people I know (at church etc) that I didn’t really want to share anything about the cancer at that time. That worked out great. Silver lining was I got lots of compliments on my ‘new look’.

Some women do want the control and shave their head.

My hair started to come out at an out of town trip (I didn’t have the wig with me, because by the 3rd chemo, doc said my hair wouldn’t come out until the next type of chemo) - got home. The next morning, Sunday, I literally could gently over the trash can ease all the hair off my head, just like brushing your hair with my hand. There were a few hairs left on my head, but I was nearly bald. So on went the wig, and off to church.

Hope your sis is healthy enough to endure all they throw at her to clear her of cancer.

Being there for all the odds and ends will be very re-assuring for your sis and her family.

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Be as cheerful as you can. My mom has cancer and gets really down. It’s just been an on-going thing for a few years now for her.

I do just about anything to make her laugh when I visit and call and it really makes a difference according to my dad… She perks up, actually feels less pain and joins in conversation. Focus shifts from “what can I do to help, care, poor you.” to life is happening as always and you’re still part of it. I act like all is normal and she joins in. Talk current events, politics. You can actually watch a physical change to more relaxation

I have found that meals are always a stickler for my mom. When visitors come she thinks she needs to entertain in some fashion. Don’t ask me why. Nobody has expectations. Bringing, making meals with a “no big deal” attitude is a huge stress reliever for my mom.

Meals can be huge–if you can set the family up with meals, easy menus the kids can fix, frozen/fresh foods they like-- it can be a lifesaver. Making trips to the grocery store and figuring out easy meal options (with grocery lists) for after you leave can be a god send. Fortunately these days there are so many more options for frozen ready-made meals–take advantage. Don’t forget ready made salads/fresh veggies and all the short cut options.Steamed microwave veggies etc. A rice cooker. It makes life so much simpler.

Lots of prayers going to your sis!

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Post 6–taking pictures.
Gotta laugh–my mom in NO way wants pix taken because she thinks everything looks terrible of her (not true in my eyes) .So last week I did selfies to get pix. “Here we are, SMILE!” and she couldn’t say no. And had to smile because it’s so spontaneous. Great pix!

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Thank you all for the tips. I leave tomorrow morning.