How do I care for someone with cancer?
January 15, 2016 7:28 PM Subscribe
My SO has a large tumour we're expecting to learn is cancer. Chances of it being benign are small. Assuming surgery/chemo - how do I care for him, both physically and emotionally? We also have a 1yr old - how might he be impacted? What can I do to prepare for treatment? How can I prepare our home?
I have never dealt with a major illness before.
Thank you
That sucks. I'm sorry to hear it.
I had early-stage breast cancer last year and spent most of the year in treatment: surgery, then chemo. I'm not sure how much of my experience can transfer, but I do know that ending up in Cancerland is never good.
Make sure you have a relationship with your SO's care providers, especially the surgeon and oncologist(s). Get their cell numbers so you can call or text with weirdness at odd hours. (I was almost always reluctant to contact them; my husband was not so bashful, which was extremely useful.) Go to appointments with your SO. Write stuff down. Record appointments if you think that will be more helpful for you. If you hate them (for ANY REASON AT ALL, rational or irrational), talk to another provider. Seriously. Do not go through this with any doctors you dislike.
Get yourself into a caregivers support group, and ask about therapy specifically for people dealing with cancer; my therapist, who works through my oncologist's office, was an invaluable resource. At my practice, caregivers and family members could also get therapy through the office.
It's too hard to predict how he'll react to surgery and chemo; it's extremely variable between procedures, protocols, and people. For me, surgery meant I was in the hospital for 5 days, then basically out of it for another week. But, like, all surgeries are really different.
Generally, stairs are a problem after surgeries, so setting up a place where your SO can sleep, eat, and go to the bathroom on all one floor is ideal. If your child tends to come to your family bed, your SO needs to sleep elsewhere. After some surgeries, it's more comfortable to sleep in a recliner than a bed.
Download a medication timer app, especially for after surgeries. It's hard to remember when you took a percocet, ibuprofen, antibiotic, etc, especially if you're the one taking meds.
Line up childcare. You're going to need it. If you're in a playgroup or mothers/parents group, you may be able to ask for help there. (My playgroup organized and came through like champs on my chemo days, bringing me dinner and taking my son while I got chemo.) I couldn't drive myself to chemo (because of the other drugs in my chemo cocktail), so having childcare coverage was critical. If you have family who can come to town or lives nearby, this is the time to lean on them.
As for dealing with chemo: It's also very variable. Aggressively pursue medications to help with side effects: Modern medicine is very good at dealing with many of the parts of chemo that made it intolerable in past decades. Trying to keep up with exercise is good. Some people do better by keeping their normal routines (working, etc), some people need a break to deal with it. Figuring out where your SO lies, both based on his personality and what kind of chemo he's getting is useful. Make sure he eats and drinks; he may have weird palate changes.
Before treatment starts, take family photos of all three of you, with your SO and his hair (if he has any.) I hated losing my hair, and I'm still mad that I don't have my "real" hair back.
Good luck. Feel free to MeMail me.
posted by purpleclover at 8:54 PM on January 15, 2016 [9 favorites]
I had early-stage breast cancer last year and spent most of the year in treatment: surgery, then chemo. I'm not sure how much of my experience can transfer, but I do know that ending up in Cancerland is never good.
Make sure you have a relationship with your SO's care providers, especially the surgeon and oncologist(s). Get their cell numbers so you can call or text with weirdness at odd hours. (I was almost always reluctant to contact them; my husband was not so bashful, which was extremely useful.) Go to appointments with your SO. Write stuff down. Record appointments if you think that will be more helpful for you. If you hate them (for ANY REASON AT ALL, rational or irrational), talk to another provider. Seriously. Do not go through this with any doctors you dislike.
Get yourself into a caregivers support group, and ask about therapy specifically for people dealing with cancer; my therapist, who works through my oncologist's office, was an invaluable resource. At my practice, caregivers and family members could also get therapy through the office.
It's too hard to predict how he'll react to surgery and chemo; it's extremely variable between procedures, protocols, and people. For me, surgery meant I was in the hospital for 5 days, then basically out of it for another week. But, like, all surgeries are really different.
Generally, stairs are a problem after surgeries, so setting up a place where your SO can sleep, eat, and go to the bathroom on all one floor is ideal. If your child tends to come to your family bed, your SO needs to sleep elsewhere. After some surgeries, it's more comfortable to sleep in a recliner than a bed.
Download a medication timer app, especially for after surgeries. It's hard to remember when you took a percocet, ibuprofen, antibiotic, etc, especially if you're the one taking meds.
Line up childcare. You're going to need it. If you're in a playgroup or mothers/parents group, you may be able to ask for help there. (My playgroup organized and came through like champs on my chemo days, bringing me dinner and taking my son while I got chemo.) I couldn't drive myself to chemo (because of the other drugs in my chemo cocktail), so having childcare coverage was critical. If you have family who can come to town or lives nearby, this is the time to lean on them.
As for dealing with chemo: It's also very variable. Aggressively pursue medications to help with side effects: Modern medicine is very good at dealing with many of the parts of chemo that made it intolerable in past decades. Trying to keep up with exercise is good. Some people do better by keeping their normal routines (working, etc), some people need a break to deal with it. Figuring out where your SO lies, both based on his personality and what kind of chemo he's getting is useful. Make sure he eats and drinks; he may have weird palate changes.
Before treatment starts, take family photos of all three of you, with your SO and his hair (if he has any.) I hated losing my hair, and I'm still mad that I don't have my "real" hair back.
Good luck. Feel free to MeMail me.
posted by purpleclover at 8:54 PM on January 15, 2016 [9 favorites]
Okay, so I just read this book and am plugging it everywhere, but Augusten Burroughs's This Is How has some really excellent advice on mentally coping with someone's illness in it. Like I wish it had existed yonks ago when my dad was diagnosed. He makes it feel like something you'll be able to deal with. I just kinda wrote up this outline of the "How To Be Sick" essay:
* The worst day of it is going to be the day of diagnosis, when everything is new and strange and surprising.
* But once you're in the midst of the disease, things will be okay. You will get used to the idea, essentially.
* Don't anticipate the disease--deal with things as they happen, when they happen. Pay the price when the time comes and not before. Accept your new defaults.
* You think the worst thing about it is when your loved one is hooked up to tubes and can't go outside again--but you will be used to the idea by the time it happens.
* You will be forced to make choices without enough time or information to be confident in your decisions--there's nothing you can do about that but accept it.
* Your definition of normal has changed and it won't do you any good to try to pretend you're like other people any more. “Normal” in this context is a lie: it means “prediagnosis.” With Disease is your new normal. As part of your compensation package for taking on disease, you are owed easy parking for the rest of your life.”
* “Nothing is as bad as you anticipate it will be. Even the worst thing you can imagine is not so terrible when viewed from the inside. Because once you are inside it, it’s okay."
* Don't hope to not get latter stage symptoms--they're probably inevitable, just deal with them when they come. It just makes it scarier on you to dread them. If they happen, you will adjust. "It is the unknown that we are compelled to fear and dread. It is the unknown that we see as the enemy."
* “Once you're in it, it’s okay. Whatever it is. However bad it gets. It won’t be the way you imagine it will be from where you stand now. It won’t be anything like what you imagine right now. It will be more like today than the way you think it will be.
As a matter of fact, it will be exactly like today. Except, not exactly the same elements will be in place.”
* "I had spent all those years dreading what were now the best time we’d ever shared. It was awful. Not being able to even take a walk cannot be spun into something positive. But it didn’t matter. And that’s the truth. It didn’t matter at all that he couldn’t go outside. We had all we needed inside. It was very warm and comfortable there, in the heart of the fatal disease. I hadn’t expected that.”
posted by jenfullmoon at 9:44 PM on January 15, 2016 [27 favorites]
* The worst day of it is going to be the day of diagnosis, when everything is new and strange and surprising.
* But once you're in the midst of the disease, things will be okay. You will get used to the idea, essentially.
* Don't anticipate the disease--deal with things as they happen, when they happen. Pay the price when the time comes and not before. Accept your new defaults.
* You think the worst thing about it is when your loved one is hooked up to tubes and can't go outside again--but you will be used to the idea by the time it happens.
* You will be forced to make choices without enough time or information to be confident in your decisions--there's nothing you can do about that but accept it.
* Your definition of normal has changed and it won't do you any good to try to pretend you're like other people any more. “Normal” in this context is a lie: it means “prediagnosis.” With Disease is your new normal. As part of your compensation package for taking on disease, you are owed easy parking for the rest of your life.”
* “Nothing is as bad as you anticipate it will be. Even the worst thing you can imagine is not so terrible when viewed from the inside. Because once you are inside it, it’s okay."
* Don't hope to not get latter stage symptoms--they're probably inevitable, just deal with them when they come. It just makes it scarier on you to dread them. If they happen, you will adjust. "It is the unknown that we are compelled to fear and dread. It is the unknown that we see as the enemy."
* “Once you're in it, it’s okay. Whatever it is. However bad it gets. It won’t be the way you imagine it will be from where you stand now. It won’t be anything like what you imagine right now. It will be more like today than the way you think it will be.
As a matter of fact, it will be exactly like today. Except, not exactly the same elements will be in place.”
* "I had spent all those years dreading what were now the best time we’d ever shared. It was awful. Not being able to even take a walk cannot be spun into something positive. But it didn’t matter. And that’s the truth. It didn’t matter at all that he couldn’t go outside. We had all we needed inside. It was very warm and comfortable there, in the heart of the fatal disease. I hadn’t expected that.”
posted by jenfullmoon at 9:44 PM on January 15, 2016 [27 favorites]
Response by poster: Thank you. I am bursting into tears. I had severe post natal depression after the baby, and just got out of it when this happened. He spent all year taking care of me. I will get the book.
posted by scuza at 2:00 AM on January 16, 2016
posted by scuza at 2:00 AM on January 16, 2016
Look into cancer cookbooks. Also, Cancer.gov has a booklet about food (pdf) which includes recipes and advice for before, during, and after treatment and how to manage eating problems.
posted by bentley at 1:14 PM on January 16, 2016
posted by bentley at 1:14 PM on January 16, 2016
« Older Getting from Millbrae to Palo Alto before Caltrain... | Bidding on a house in a seller's market Newer »
This thread is closed to new comments.
posted by Oyéah at 7:43 PM on January 15, 2016 [2 favorites]