How can I help my mom through chemotherapy?

September 13, 2005 8:34 AM

How can I help my mom through chemotherapy? She has breast cancer, and has had a bilateral mastectomy and is healing well. There's a lot of cancer in my family, and I've been picking up tips from various sources, but I thought I'd cast my advice net a little wider.

I've been advised to give up strong smelling foods and switch from stinky coffee to tea (ack, NO!!!), to wash all her linens and clothing in salt water to get rid of the smell of fabric softener, to have a good supply of stool softeners and hemorrhoid creams, to never ever let any doctor give her compazine. I'm looking for more tips like this, small practical things that will help make her more comfortable. Also, if anyone can refer books or websites, I'd be grateful.

posted by Sara Anne to health & fitness (17 comments total)

Chemo makes your appetite suck and makes you nauseous. When my Mom's roomate went through chemo, one of the good things to do early was to figure out what high calorie foods she could tolerate soon after chemo. Her preferences were custards, flans and other mushy eggy things. Once you find something that works, stock up. My Mom's roomate had a pet that she enjoyed being with when she couldn't deal with being with other people. Sometimes having something to look after [with the caveat that if you're feeling too lousy someone can come in and feet and care for it] when you're feeling really lousy can be a pick-me-up, other options are plants, fish, etc. Depending on your sense of decorum, chemo can really make you a hermit because of the nausea, so keep that in mind. Also, marijuana is really good at helping with chemo nausea. This may be way outside of legal or ethical boundaries for your family, but it's worth knowing just he same. It can be smoked or cooked into tasty foods.

Smells were not as huge of an issue in my Mom's household for whatever reason, just FYI. Also if you're worried about coffee brewing smells, you can make cold-press coffee which doesn't really smell. A lot of it will depend on attitude. My Mom's roomate really wanted to hide when she was feeling lousy, but then put on her wig and got right back to work as soon as she was able. Obviously this isn't going to be everyone's cup of tea, so maintaining a bit of a "wait and see" attitude while being prepared for many different eventualities is key.

Another thing to think about is you. If you're your Mom's main support, you may want to start thinking about getting people in to help you with your job [either driving your Mom to and from chemo or coming in to do laundry or what have you] which will give you some more time to spend quality time with your Mom. Being supportive for someone going through chemo is a lot of work and you'll be most effective if you can keep your stress level down. Many church and civic organizations have people who do this sort of thing, don't be afraid to reach out to your community [with your Mom's OK] to get some assistance.
posted by jessamyn at 8:47 AM on September 13, 2005

There are recipe books published by the American Cancer Society and others that include recipes for calorie-dense foods that go down easy. Check out these two:

What to eat when you don't feel like eating

The Cancer Survival Cookbook

Also, besides getting outside support for yourself as jessamyn suggested, do what you can to make sure your mom has support from people who aren't quite so close to her. I know you want to do everything you can to help, but your mom may not want to share her crappier feelings and fears with you, lest they worry you or add stress to your life.
posted by duck at 9:07 AM on September 13, 2005

Here's some quick support. If you're in the SF-Bay Area, CBHP's Helpline can put you in touch with tons of resources.
posted by Loser at 9:55 AM on September 13, 2005

My dad's going through chemo for the fourth time in three years, and we've learned a lot. I'd say that the advice above pretty much encompasses what I'd tell you, but I'd add two things - have plenty of Gatorade (or a similar rehydration drink) on hand for those bouts of nausea and diarrhea (your mom will never feel any better if she's dehydrated and her electrolytes are out of whack even if she stops puking). Also, consider using a drink like Ensure for those days when she doesn't feel like eating a thing - the drinks come in handy little cans that are already portion-sized. They're available in a bunch of different flavors from chocolate to fruity-berry.

I'd also say, be prepared for a new person. Chemo doesn't only make you sick but it changes something about you. My father used to be a fabulous driver, a great parallel parker - he was a valet in his younger days - but ever since he's been on chemo, he seems to have lost his spatial reasoning capabilities and he's actually hit two cars on two different occasions when trying to park. I've talked to a number of friends who have relatives with cancer and they've noticed similar things - one friend said that her mom's bout with breast cancer left her with completely different interests in television (my friend said her mom never missed an episode of Everybody Loves Raymond, and since her chemo she hasn't watched a single show). Another friend recounted that her brother, who previously could balance his checkbook in his head, now can't do complicated sums like he used to.

I'm not trying to scare you, but I'm just trying to prepare you - I hope that your mom doesn't change at all, but I want you to be prepared in case she does.
posted by MeetMegan at 9:56 AM on September 13, 2005

Well, I'm scared now. I'm in the last stages of my chemo (Hodgkin's) and the biggest things in my mind are:

1) Water. My main appetite problems have been due to this nasty glue-like taste in my mouth that changes the taste of everything I drink or eat. I've finally started listening to people and have started drinking as much water as I can hold and that seems to be helping with the taste thing.

2) Neulasta sucks. Sure, it's probably helping keep me on track and all, but that one little shot is the cause of most of my pain & suffering in chemo. Granted, it's not the end of the world, but it's not pleasant at all. If your mom is given the shot as part of her treatment, make sure she takes some type of painkillers (Tylenol or the like is fine) regularly for the next day or two after the shot. That's what they recommended to me and it seems to be treating me better.

3) The smell thing. I'm finding I am more sensitive to smells, but I don't need the extreme-sounding measures with the linens. I think the easiest way to sum it up is, bad smells are much worse, good smells vary depending on the day.

4) Food on chemo days. This might be more of a power-of-persuasion thing for me, so you might want to keep it to yourself. I heard beforehand that a lot of people have trouble eating foods they eat on chemo days. Bad connotations or somesuch. I know that I can't bring myself to eat honey grahams or drink green Gatorade, both of which I had on that first loooong day of chemo. Since then, I've tried to be clever, eating McDonald's and other fast foods on chemo days, hoping to turn myself off from the stuff. No luck with those so far.

Now I'm going to go outside and practice my parallel parking.
posted by Moondoggie at 11:00 AM on September 13, 2005

Oh, one other thing - everyone's chemo is different, even if they're getting the same drugs. For the most part, I think I've had it pretty easy through my chemo. They're apparently using some pretty aggressive stuff, but my body doesn't seem to mind. Just make sure she remembers it doesn't always have to be horrible and that hers could be a lot easier than others'.

Oh, and if she doesn't have a port installed to receive the chemo, I highly recommend it.
posted by Moondoggie at 11:05 AM on September 13, 2005

A great resource for me --- since I felt really uncomfortable with the traditional support group scene -- was this group -- which will give her the power (in an almost powerless situation) to access the information she wants at her own pace. She can find out exactly what's coming, get excellent, practical tips and advice, and enjoy the true (and anonymous) support of many women who have been there ... and are now thriving. It's a bit puppies/kittens/rainbows every now and then, but she can seek what she needs, participate or simply read and learn. By the way, I am 28 months out of chemo and doing fabulously well -- new job, new man, new home. Sometimes I realize that days have gone by and I haven't thought at all about breast cancer! Tell her I said that! Feel free to email me ...
posted by thinkpiece at 11:53 AM on September 13, 2005

Sara Anne, I'm in the same situation, except 1000 miles removed from my mom. Thanks for this thread and to all the people who have replied in it. I hadn't given any of this consideration.
posted by LeiaS at 12:42 PM on September 13, 2005

Be careful about carrying in anything contagious, and get a flu shot (and one for your mom - she'll have some priority if there's another shortage) - chemo can suppress the immune system very badly.

Ask her what she needs as this gets underway.

Be aware that she may need everyone to leave her alone and stop fussing over her sometimes, and try to take a hint or just ask if you think that's what she's thinking.

For appetite, there's a drug called Megace, but it has some odd side effects.

She'll probably want strong moisturizer, but that may be specific to the drugs being used.

If she gets weak and tired, find stuff for her to do that's interesting but not too demanding and leave it around in case she wants it.

Did I mention the breaks from being fussed over? My mother hated it when people wouldn't leave her alone, and it's hard to do that.
posted by dilettante at 1:40 PM on September 13, 2005

My Dad's a diabetic, so that makes his post-chemo diet choices even more tricky. He eats a lot of oatmeal with fresh berries and quiche with spinach and/or bacon in it. Those are both comfort foods for him though.

Sparkling mineral water has been a godsend for keeping his throat clear, so he's less likely to gag. Our favorite is Crystal Geyser, but I don't know if that's available where you are.

Also, sorry if I missed it in the comments above, but consider finding ways to relax outdoors. Going to treatments and staying in bed all the time gets monotonous and stuffy. As soon as she is able, try to schedule some quiet time outside. The fresh air and change of scenery can do a world of good.
posted by whatnot at 1:48 PM on September 13, 2005

I'm curious what the big objection to compazine is? It's certainly not a completely benign drug, but it's used fairly routinely and with great success and rare complication as an antiemetic. Is it the concern for dystonic reactions? I guess I've never heard such vehement opposition to it...
posted by drpynchon at 2:15 PM on September 13, 2005

Moondoggie, on an aside, can you tell me about your port? I have Cystic Fibrosis and they keep trying to get me to put in a port for the IV antibiotics I get once a year. But I don't want a permenant port for something I only get once a year. What is it like? I thought it is subcutaneous (spelling?)-is that right? Can you swim with it/take baths? Does it have high risks of infection? How big is the site? How do you put the drugs into the port? Thanks.

I'm sorry to hear about all of you with cancer. My heart goes out to you all.
posted by aacheson at 4:04 PM on September 13, 2005

Aacheson - the port is subcutaneous and thus swimming and baths are okay once the incisions have healed from having it placed. You know when you have an IV line hooked up to you, how there's the little round bits they can stick a needle into all up and down the line? Well, that's basically what the port is - a big one of those just under your skin. Just feeling mine right now, I'd say it's about as big around as a nickel. Mine is on my chest, an inch or two down from my collarbone. It sticks out a little bit because it's in one of my less fatty spots.

It's definitely weird having it in there. It took me awhile to get used to the idea of having a foreign object imbedded in me, especially one so close to the skin. It would be one thing to have, like, pins in a broken bone, but I can actually feel the tube that eventually goes into my jugular vein, and that weirds me out a little even now, almost 5 months later.

As for putting the drugs in, they have this rather frightening looking L-shaped needle that they poke through the skin and into the port. As long as you don't look at it, the poke isn't that bad and even if you do look at it, the poke is short.

I'm getting chemo every other week, and some of it is really corrosive to veins. They tell me that if I didn't have this done, they would have had to keep finding new veins to run the drugs through. With the port, it goes right into the jugular (at least mine does. My cousin's is in his arm) so it's a nice big vein that doesn't get bothered by the drugs. The other added benefit is you don't get a lot of the typical chemo reactions - burning, some of the nausea, etc. I don't know if you're going through that right now with the antibiotics.

The other last thing is that once my chemo's done, I'm going to be keeping it in for awhile just to make sure I don't have a recurrence. Because of that, I'll have to stop by the doctor's office every so often to have the port flushed with heparin to make sure it doesn't clot up. I'm not sure how long these things can go without a flushing, but you might want to be sure and find out since you'd only be using it once a year or so.

If you or anyone else out there has port or chemo questions, feel free to email me. Always glad to chat when I get around to replying :)
posted by Moondoggie at 8:00 PM on September 13, 2005

My mother had chemo for lung cancer. Besides a major loss of appetite (she said everything tasted & smelled strange), the biggest problem she had was neuropathy - she lost feeling in her hands and feet. She described it as having your legs encased in blocks of ice from her toes to mid-calf. The neuropathy made it very difficult for her to walk because she couldn't squinch up her toes.

Make sure you get someone to help you with your mother's care. It's a very hard thing to care for someone all of the time.
posted by Serena at 8:32 PM on September 13, 2005

Thanks to everyone for your answers and your kind thoughts. Especially to Moondoggie for your first-hand wisdom. Congratulations on nearing the end of chemo!

To answer DrPynchon's question: The objection to compazine is that two people I know who were prescribed it for post-chemo nausea suffered psychotic breaks after taking it. Said breaks were observed by my parents, both psychologists. Neither of the breakees had ever suffered from psychosis before, and both refused to ever take compazine again, and have not since suffered from psychosis since. Compazine works for a lot of people and is usually the prescription of first resort for post-chemo nausea because it is relatively inexpensive, but we don't want to risk such a dreadful potential side effect for my mom.

Again thanks everyone. My mom's already bought the what to eat when you don't feel like eating book, and while I'm not exactly looking forward to the next few months, I'll be able to feel better about it if I can make her life a bit easier.
posted by Sara Anne at 9:39 PM on September 13, 2005

Also, to LeiaS:
If your mom is having TRAM flap reconstruction post mastectomy, tell her to buy some panty girdles. It has helped my mom feel more comfortable moving around to have some extra support where her belly tissue used to be.

To Aacheson, my sister had a port for her chemo, and it worked really well, saving some of the veins in her arms from chemo scarring. The only drag was that she had to be on coumadin to prevent clotting and had to be really careful about getting cuts and bruises.
posted by Sara Anne at 10:16 PM on September 13, 2005

I would just highlight that one of the best ways to help your mom through chemo is to take good care of yourself. Eat well, exercise, make sure you ask for the things you need, like time off or help if you can't get everything done. Make sure that on even the hard days you get to do something for yourself, take a walk, play a videogame, meditate, talk to a friend - whatever. It is really really important.

Remember that you'll be a much better support for your mom if you take care of yourself.
posted by mulkey at 10:55 PM on September 13, 2005