how to talk to a friend with cancer
December 16, 2007 9:45 AM Subscribe
How to talk to a friend with cancer, Time interview. Author of the excellent, Help Me Live: 20 Things People With Cancer Want You to Know [now a free, readable online Google book], Lori Hope, also lectures on compassionate communication and blogs for the practical and supportive CarePages.com, "free, personal websites that connect family and friends during illness and injury. Top 10 Dos and Don'ts.
oops, forgot the quotation mark after injury. Sorry.
posted by nickyskye at 10:25 AM on December 16, 2007
posted by nickyskye at 10:25 AM on December 16, 2007
Everybody likes to hear they've lost weight though, right?
posted by StickyCarpet at 10:27 AM on December 16, 2007
posted by StickyCarpet at 10:27 AM on December 16, 2007
You know, this would have really helped last year when a friend died of cancer. It was really hard to figure out how frankly I could talk to him. He would toss off things like 'dying of cancer' in conversation, and I'd want to say "Well, is there really no hope at all?", but that seemed like a rough topic to someone who's in pretty bad shape.
Good post.
posted by lumpenprole at 10:58 AM on December 16, 2007
Good post.
posted by lumpenprole at 10:58 AM on December 16, 2007
lumpenprole, I appreciate your bringing up the "dying of cancer" topic. I think it's helpful to ask a person who is dying of cancer, or whatever illness, how they feel about dying and death and talking about that, letting them know they are not alone in their process, that you are there for them as a friend and will keep them company as they face this.
Perhaps what you meant to say was, "Is there no way to stop the cancer and add a bunch of years to your life?" Do you think that's a question to which he knew the answer? And if he said he was dying, that was the answer. Then it's up to you, as a friend to deal with the answer, the reality of him facing death.
"Well, is there really no hope at all?" is such a despairing statement. It doesn't help the person facing death. You are also going to die. Is there no hope for you? Or for all the people in the world who ever existed that died, are dying or will die? Does facing death mean "no hope"? Being hopeless seems to be about feeling bleak, defeated, bereft, crushed. I think one can face death without feeling like that. I think having hope and being hopeful is something one can do while also facing death. I don't know why this would be except that feeling loved, cared about, having a friend there making the effort in spite of death being the outcome, keeping company offers hope.
posted by nickyskye at 11:30 AM on December 16, 2007 [3 favorites]
Perhaps what you meant to say was, "Is there no way to stop the cancer and add a bunch of years to your life?" Do you think that's a question to which he knew the answer? And if he said he was dying, that was the answer. Then it's up to you, as a friend to deal with the answer, the reality of him facing death.
"Well, is there really no hope at all?" is such a despairing statement. It doesn't help the person facing death. You are also going to die. Is there no hope for you? Or for all the people in the world who ever existed that died, are dying or will die? Does facing death mean "no hope"? Being hopeless seems to be about feeling bleak, defeated, bereft, crushed. I think one can face death without feeling like that. I think having hope and being hopeful is something one can do while also facing death. I don't know why this would be except that feeling loved, cared about, having a friend there making the effort in spite of death being the outcome, keeping company offers hope.
posted by nickyskye at 11:30 AM on December 16, 2007 [3 favorites]
Thanks for this nickyskye. Everyone should read the top 10 link. Mom has been "dying of cancer" for about 10 years. She is at home in hospice now. Couple days, maybe a week.
Yesterday one of my Dad's friends came over with his wife. He said, "you look as beautiful as ever."
Dumb ass.
posted by daniel9223 at 11:46 AM on December 16, 2007
Yesterday one of my Dad's friends came over with his wife. He said, "you look as beautiful as ever."
Dumb ass.
posted by daniel9223 at 11:46 AM on December 16, 2007
Great post. About 10 years ago a co-worker of mine was dx'd with lung cancer. The sad part (other than the diagnosis) was that she seemed so alone in the world. She had no family (had been raised by an aunt and uncle who were now deceased) and had just her next-door neighbor and a few women from her bowling team to come by and check on her. I can't say that I was a good friend of hers, but I was the one who took over her job at work, so one day I packed up the stuff in her desk and brought it to her house. She owned some love birds and parakeets, and was unable to stay upright very much, so I offered to clean their cages while I was there. We'd talk on the phone semi-regularly after that, and as she went from having to use a bedside commode to having a hospital bed moved into her living room and relying on a bedpan, she still kept saying she was going to "beat this thing." I tried to be as upbeat as possible, but it's hard to remain optimistic when a person kept calling to report the latest downturn. I did stop by her house a few more times, and basically followed her cues - I'd ask the "how are you doing" question suggested in the first link, and she'd talk about how she felt, or her latest treatments for a bit, then would abruptly halt and say "Let's not talk about this right now." Whenever she said that, icy hands clutched at my heart, because I realized that despite her "I'm going to beat this" mantra, deep down she knew the odds.
posted by Oriole Adams at 11:47 AM on December 16, 2007
posted by Oriole Adams at 11:47 AM on December 16, 2007
hla9k: for those so inclined, dark humor is a fabulous salve. it's a way to talk about unpleasant things and blows off steam with the laughing.
i've had two go-rounds with cancer (happily, neither required chemo or radiation -- i strongly suggest getting a lazy tumors rather than those type A go-getter cancers, if you have the choice), and savagely dark humor was one of the things that kept me sane.
posted by rmd1023 at 12:20 PM on December 16, 2007 [1 favorite]
i've had two go-rounds with cancer (happily, neither required chemo or radiation -- i strongly suggest getting a lazy tumors rather than those type A go-getter cancers, if you have the choice), and savagely dark humor was one of the things that kept me sane.
posted by rmd1023 at 12:20 PM on December 16, 2007 [1 favorite]
rmd1023, Would love examples of "savagely dark humor" that kept you sane. And glad you're surviving.
posted by nickyskye at 12:37 PM on December 16, 2007
posted by nickyskye at 12:37 PM on December 16, 2007
ps daniel9223, My dad was dying of lymph, lung and skin cancer for about a decade too before he made his exit aged 51. An added burden on people dealing with cancer is that death seems and may be near at hand all the way through the ordeal and that may be quick or last a long time.
Anyone I know around a dying person has been grateful for hospice care. My loving support to you as you go through your mother's dying process.
posted by nickyskye at 12:49 PM on December 16, 2007
Anyone I know around a dying person has been grateful for hospice care. My loving support to you as you go through your mother's dying process.
posted by nickyskye at 12:49 PM on December 16, 2007
savagely dark humor was one of the things that kept me sane
My father has cancer and is currently undergoing radiation. The man is stoic by nature and our family generally not prone to displays of emotion. My wife calls us the "Nietzsche" family. So being our usual smart ass selves has been the way we have dealt with the topic.
He kept the fact he had cancer a complete secret until the treatment options forced him to reveal it to us. In fact I think he has known a great deal longer than he has let on. We were all, the whole family, supposed to go to Paris in January. A trip we had been planning for over a year. I was trying to get m parents to nail down a date when he dropped the bomb on me and told me he would be in the middle of radiation treatments (not knowing if he would have any side effects) and would not be able to go. After he said it he then looked at me and said
"God damned me and my stupid cancer, huh. We ruined your vacation."
I had to laugh.
I think I have related this before. When my friend Scott had a brain tumor years back the surgeon told him his operation would leave him with some short term memory loss. Scott is a comedy writer and turned the whole thing into a bit. He insisted that after surgery we come to his recovery room dressed in matching futuristic jumpsuits with like numbers on them and convince him he had been a coma for thirty years.
Instead when he woke up we called by a different name and told him he was gay.
posted by tkchrist at 12:59 PM on December 16, 2007 [1 favorite]
My father has cancer and is currently undergoing radiation. The man is stoic by nature and our family generally not prone to displays of emotion. My wife calls us the "Nietzsche" family. So being our usual smart ass selves has been the way we have dealt with the topic.
He kept the fact he had cancer a complete secret until the treatment options forced him to reveal it to us. In fact I think he has known a great deal longer than he has let on. We were all, the whole family, supposed to go to Paris in January. A trip we had been planning for over a year. I was trying to get m parents to nail down a date when he dropped the bomb on me and told me he would be in the middle of radiation treatments (not knowing if he would have any side effects) and would not be able to go. After he said it he then looked at me and said
"God damned me and my stupid cancer, huh. We ruined your vacation."
I had to laugh.
I think I have related this before. When my friend Scott had a brain tumor years back the surgeon told him his operation would leave him with some short term memory loss. Scott is a comedy writer and turned the whole thing into a bit. He insisted that after surgery we come to his recovery room dressed in matching futuristic jumpsuits with like numbers on them and convince him he had been a coma for thirty years.
Instead when he woke up we called by a different name and told him he was gay.
posted by tkchrist at 12:59 PM on December 16, 2007 [1 favorite]
My mom has cancer. One of the things that I think is most pernicious in our society is the message that if you really, really, try, you can "beat" the cancer. The subtext is that if you get sicker and die it's because you weren't a real fighter. It's incredibly frustrating to her, and me. That would be the single message I'd send to anyone with a friend or loved one who is diagnose: be careful with those messages. Some people can survive cancer. Some can't.
posted by miss tea at 1:35 PM on December 16, 2007 [4 favorites]
posted by miss tea at 1:35 PM on December 16, 2007 [4 favorites]
Very timely--I am out of bed today for the first day since having a cancerous growth removed along with half my thyroid. It was blessedly what is considered "benign" in thyroid cancer-- it had not spread to the outside of the growth, therefore no chemo or additional therapy necessary (as far as I know at this time).
I have heard the following from well-meaning friends: "you need to deal with your throat chakra. This happened because you aren't open about something you're feeling" (and various other takes on "it's your fault"); "well, if you have to have cancer this is the one to have" (Gosh, could I just NOT have cancer at all?); "I'm glad you're okay, but here is the awful thing that I have been going through this week." (This is supposed to, what, put it all in perspective?). "Good thing you're not REALLY sick." (The whole major surgery thing being just a walk in the park I guess) "How can I help? (I don't know how you can help. I'm scared and angry, and terrified that I will die and leave my family. I don't know how to ask for help, or what help I will need. I am not used to needing help and don't want to need help.)
I also feel much better about how I dealt last year with a friend with a very serious cancer; I was really upfront about not feeling I was in a position to help; she has turned out to be a terrific support in my recent bout.
Thank you nickyskye.
posted by nax at 1:40 PM on December 16, 2007 [4 favorites]
I have heard the following from well-meaning friends: "you need to deal with your throat chakra. This happened because you aren't open about something you're feeling" (and various other takes on "it's your fault"); "well, if you have to have cancer this is the one to have" (Gosh, could I just NOT have cancer at all?); "I'm glad you're okay, but here is the awful thing that I have been going through this week." (This is supposed to, what, put it all in perspective?). "Good thing you're not REALLY sick." (The whole major surgery thing being just a walk in the park I guess) "How can I help? (I don't know how you can help. I'm scared and angry, and terrified that I will die and leave my family. I don't know how to ask for help, or what help I will need. I am not used to needing help and don't want to need help.)
I also feel much better about how I dealt last year with a friend with a very serious cancer; I was really upfront about not feeling I was in a position to help; she has turned out to be a terrific support in my recent bout.
Thank you nickyskye.
posted by nax at 1:40 PM on December 16, 2007 [4 favorites]
nickyskye: my favorite example -- the first go-round with cancer i had was uterine cancer. so i had my uterus removed (although the ovaries stayed in, until the second go-round with cancer 5 years later). after the surgery, some very good friends sent me a *hideously* ugly floral arrangement in the hospital with "BEST WISHES ON YOUR NEUTERING" written in glitter on a banner across the arrangement. (other non-cancerous examples of savagely dark humor -- my father very recently died in an car accident where his car went off into the water. i announced this to some of the same people in an email with the subject 'NO KENNEDY JOKES, YOU ASSHOLES')
these days, i joke that my cats and i have all been spayed.
tkchrist: that's ... that's just beautiful. did you introduce him to his long term boyfriend?
miss tea and nax: i absolutely hate any of that "you brought this into your life" victim blaming. on a rational level, i know it's a way for people to try and reassure themselves that this sort of thing won't happen to them because, you know, they're sufficiently dedicated or evolved or something. but still. to hell with that.
one thing i found incredibly *comforting* with regard to cancer -- and i held to this like people of faith hold to prayer and god -- is the fact that any time medical science gives you survival odds, it is ALMOST BY DEFINITION better than the stated odds. because all those stats are based on people who were treated in the past, and you are being treated in the present or the future. 5 year survival stats? based on people treated 5 years ago! practically the stone age!
posted by rmd1023 at 2:38 PM on December 16, 2007 [10 favorites]
these days, i joke that my cats and i have all been spayed.
tkchrist: that's ... that's just beautiful. did you introduce him to his long term boyfriend?
miss tea and nax: i absolutely hate any of that "you brought this into your life" victim blaming. on a rational level, i know it's a way for people to try and reassure themselves that this sort of thing won't happen to them because, you know, they're sufficiently dedicated or evolved or something. but still. to hell with that.
one thing i found incredibly *comforting* with regard to cancer -- and i held to this like people of faith hold to prayer and god -- is the fact that any time medical science gives you survival odds, it is ALMOST BY DEFINITION better than the stated odds. because all those stats are based on people who were treated in the past, and you are being treated in the present or the future. 5 year survival stats? based on people treated 5 years ago! practically the stone age!
posted by rmd1023 at 2:38 PM on December 16, 2007 [10 favorites]
Very helpful post, dear nicky - thank you for sharing it.
Life-threatening illnesses often wrongly get turned back into "being about me" because we all have such enormous fears about death, our own and that of our loved ones. Death is a big hairy scary thing, we don't want to talk about it. It rocks our universe so we stop talking about you and get back to the more comfortable and seemingly safe "me, me, me."
In our parents' or grandparents' day, people saw death up close - grandparents and siblings often died and were waked at home. Today, we are sanitized and removed from the very natural fact of death and dying and so when we face the potential, it is very discomforting and fearful. We have no language. We stay silent out of fear of saying the wrong thing. We aren't used to things that can't be fixed. We play the blame game to foster our own denial and to feel the illusion of safety.
nickyskye, rmd1023, nax - by sharing your experiences and feelings, you help us all to better understand and to help the people we love who face cancer or other life-threatening illnesses - and maybe even ourselves. Thank you.
Love this: ...you are being treated in the present or the future. 5 year survival stats? based on people treated 5 years ago! practically the stone age!
posted by madamjujujive at 3:16 PM on December 16, 2007
Life-threatening illnesses often wrongly get turned back into "being about me" because we all have such enormous fears about death, our own and that of our loved ones. Death is a big hairy scary thing, we don't want to talk about it. It rocks our universe so we stop talking about you and get back to the more comfortable and seemingly safe "me, me, me."
In our parents' or grandparents' day, people saw death up close - grandparents and siblings often died and were waked at home. Today, we are sanitized and removed from the very natural fact of death and dying and so when we face the potential, it is very discomforting and fearful. We have no language. We stay silent out of fear of saying the wrong thing. We aren't used to things that can't be fixed. We play the blame game to foster our own denial and to feel the illusion of safety.
nickyskye, rmd1023, nax - by sharing your experiences and feelings, you help us all to better understand and to help the people we love who face cancer or other life-threatening illnesses - and maybe even ourselves. Thank you.
Love this: ...you are being treated in the present or the future. 5 year survival stats? based on people treated 5 years ago! practically the stone age!
posted by madamjujujive at 3:16 PM on December 16, 2007
My stepfather was just diagnosed with cancer a few days ago and I've been a mess since the news. These links are appreciated.
Thank you.
posted by gummi at 3:58 PM on December 16, 2007
Thank you.
posted by gummi at 3:58 PM on December 16, 2007
I am sorry I posted and ran. Had some work to do. Hospice workers are your friends. So is gallows humor. My best friend passed in three months at 31 yrs old. Best friend from college a year later. Death is tough and people that try and beat death lose. Fighting or living with cancer is one thing, but you can't beat death.
5 years ago is the stone age - really.
gummi stay strong, when my mom first got diagnosed I was a mess. She lived a strong, giving life for 10 more years.
Many blessings on you nickyskye for bringing this topic here and helping in whatever way.
Love to you all.
posted by daniel9223 at 5:23 PM on December 16, 2007 [2 favorites]
5 years ago is the stone age - really.
gummi stay strong, when my mom first got diagnosed I was a mess. She lived a strong, giving life for 10 more years.
Many blessings on you nickyskye for bringing this topic here and helping in whatever way.
Love to you all.
posted by daniel9223 at 5:23 PM on December 16, 2007 [2 favorites]
Nax: I'm about to have that very surgery. What's your recovery been like? My endocrinologist is horrendously unhelpful and has told me exactly nothing. I'm meeting with the surgeon next week, hopefully he can tell me more. I don't even know if they're taking the whole thyroid out yet or not!
I'm not even sure at what point they're going to tell me whether or not it's cancer. Of course, as long as they don't tell me for sure what it is, I can imagine that they're being over-cautious and I'll have this surgery just to make everyone stop freaking out at me.
posted by Hildegarde at 7:10 PM on December 16, 2007
I'm not even sure at what point they're going to tell me whether or not it's cancer. Of course, as long as they don't tell me for sure what it is, I can imagine that they're being over-cautious and I'll have this surgery just to make everyone stop freaking out at me.
posted by Hildegarde at 7:10 PM on December 16, 2007
I have heard the following from well-meaning friends: "you need to deal with your throat chakra. This happened because you aren't open about something you're feeling" (and various other takes on "it's your fault");
This is way way too common--and appalling, i think. Every single one of my friends with AIDS who are gone heard this kind of thing multiple times even back in the 80s, and now that whole "The Secret" thing has made it even more common.
Saying "try to keep a positive attitude" is one thing--blaming a disease on a person not having a positive attitude or not dealing with a trauma or issue or whatever is quite another. It's infuriating and so completely beside the point.
posted by amberglow at 8:59 PM on December 16, 2007
This is way way too common--and appalling, i think. Every single one of my friends with AIDS who are gone heard this kind of thing multiple times even back in the 80s, and now that whole "The Secret" thing has made it even more common.
Saying "try to keep a positive attitude" is one thing--blaming a disease on a person not having a positive attitude or not dealing with a trauma or issue or whatever is quite another. It's infuriating and so completely beside the point.
posted by amberglow at 8:59 PM on December 16, 2007
I took care of my mother when she was undergoing treatment for (stage iv) breast cancer.
I don't know how much a book can help some people. I realize it's very hard to know what's going on and how to be nice or helpful, but some people get it, and some people get it incredibly wrong even when they should know better. I really think it comes down to the level of empathy a person is capable of feeling, as mentioned in the first link.
I guess if you need to know how to fake it, the article is plenty instructive. Pretty much the message I get is to show conscious respect for the person and think about their needs -- be there but don't get in the way, almost. If you're naturally very empathic, this is easy. If you're not, it's not.
posted by polyhedron at 9:03 PM on December 16, 2007
I don't know how much a book can help some people. I realize it's very hard to know what's going on and how to be nice or helpful, but some people get it, and some people get it incredibly wrong even when they should know better. I really think it comes down to the level of empathy a person is capable of feeling, as mentioned in the first link.
I guess if you need to know how to fake it, the article is plenty instructive. Pretty much the message I get is to show conscious respect for the person and think about their needs -- be there but don't get in the way, almost. If you're naturally very empathic, this is easy. If you're not, it's not.
posted by polyhedron at 9:03 PM on December 16, 2007
tkchrist and rmd1023: Thanks, you made me laugh. I hope that if I ever get a serious disease, me and my friends will be able to be that darkly humorous about it, I think I'd really prefer that.
posted by Joakim Ziegler at 10:03 PM on December 16, 2007
posted by Joakim Ziegler at 10:03 PM on December 16, 2007
My Mom just got the dreaded "Remember how we thought that we got the cancer with the surgery? We didn't. You've gone from Stage 1 to Stage IV" message last week. While we've been good communicators as a family, she's had a hard time talking to people about her diagnosis because even though she's the one that's dying, they're the one's bursting into tears. She told us that if we dare talk about her "losing a valliant battle with..." she'll haunt us from the afterlife.
Everybody likes to hear they've lost weight though, right?
I think the best take-home is that there's rarely something that everyone likes to hear but there are plenty of things that most people DON'T like to hear. Thanks for the post.
posted by jessamyn at 7:28 AM on December 17, 2007 [1 favorite]
Everybody likes to hear they've lost weight though, right?
I think the best take-home is that there's rarely something that everyone likes to hear but there are plenty of things that most people DON'T like to hear. Thanks for the post.
posted by jessamyn at 7:28 AM on December 17, 2007 [1 favorite]
Hildegard, I hear you about the bullshit info they give you pre surgery. My surgeon made it sound like I'd be up and about in 24 hours. Not true. My advice is to call the surgical floor and ask to speak to the post op nurse. She is the one who gave me the best advice; I wish I'd called her earlier.
I was going to send this as MeMail to H, but as I was writing, it seemed like good info for people to have. Here's the whole tale:
What the doctor said: You'll get to the OR conscious and then we'll give you a sedative and you'll fall asleep.
What happened: I was wheeled into PreOp about 45 minutes before surgery, where they got me high on a valium drip before knocking me out with a sedative before surgery. I have only the vaguest recollection of being wheeled into the OR.
PostOp, what the doctor said: You'll wake up about an hour to 90 minutes postop and then be in recovery about 2 hours before going home. You'll have a sore throat.
What happened: this was the biggest lie. I did indeed wake up 90 minutes post op feeling really really bad. Couldn't swallow, couldn't focus just felt really awful. After about an hour they took me back to my room where my husband was waiting. Asked me to scale the pain one to ten, I told them 3 when I was just lying there, but 10 when swallowing. However, they don't really get into general feeling, and that is what was awful. You feel absolutely terrible coming out of General Anesthetic. I can't begin to describe this feeling. Anyway, the doctor came in about 2 hours later, let me know the growth was benign asked me how I felt and said I could leave "anytime". So I thought, well I might as well feel like crap at home as here and sat up.
Really bad idea. I could barely sit, there was no way I could stand. As I was sitting there, the nurse came in and indignantly asked what was going on, so I told her the doctor had said I could leave. At which point she said "I hate doctors" she then told me what I would ACTUALLY be feeling-- lousy; how long I would be feeling this way--days; and what to do about it--indulge it. She gave me many many drugs (over the course of the approx 17 hours I was at the hospital I had, in order: valium, some unnamed sedative, general an, morphine, and vicodin, then codein to take at home. I didn't feel any better, but I was so high I really didn't give a shit..) Slept on and off in 1-3 hour spans for about 48 hours. Really hard to swallow until yesterday. This is apparently not from the surgery but from the intubation for the general an. Another effect of the general an is crap in your lungs that you have to cough up. This was hard until yesterday because of the incision pain and the tracheal swelling. Again, the doctor told me nothing about this, I got it from the nurse.
today I feel fine (4 days post op); still a little woozy even though I cut the drugs late Saturday. I can handle light housework and desk work, (like Mefi!), but remember that this was a surgery that cuts no major muscle groups so recovery is easier than abdominal, spinal or limb surgeries. The incision is small; a little bruising and swelling but otherwise not too scary looking.
Sorry for the long answer, but I hope it helps someone understand what's happening post op, since the medicals you'll meet will fall back on "it's different for everyone," which is not a helpful answer.
Last piece of advice for Hildegard: discourage friends who want to talk. My voice gives way after about 10 minutes of conversation. Energy is fine, but I'm really hoarse. This is another thing the doctor said would not happen. Should have asked the nurse!
posted by nax at 9:11 AM on December 17, 2007
I was going to send this as MeMail to H, but as I was writing, it seemed like good info for people to have. Here's the whole tale:
What the doctor said: You'll get to the OR conscious and then we'll give you a sedative and you'll fall asleep.
What happened: I was wheeled into PreOp about 45 minutes before surgery, where they got me high on a valium drip before knocking me out with a sedative before surgery. I have only the vaguest recollection of being wheeled into the OR.
PostOp, what the doctor said: You'll wake up about an hour to 90 minutes postop and then be in recovery about 2 hours before going home. You'll have a sore throat.
What happened: this was the biggest lie. I did indeed wake up 90 minutes post op feeling really really bad. Couldn't swallow, couldn't focus just felt really awful. After about an hour they took me back to my room where my husband was waiting. Asked me to scale the pain one to ten, I told them 3 when I was just lying there, but 10 when swallowing. However, they don't really get into general feeling, and that is what was awful. You feel absolutely terrible coming out of General Anesthetic. I can't begin to describe this feeling. Anyway, the doctor came in about 2 hours later, let me know the growth was benign asked me how I felt and said I could leave "anytime". So I thought, well I might as well feel like crap at home as here and sat up.
Really bad idea. I could barely sit, there was no way I could stand. As I was sitting there, the nurse came in and indignantly asked what was going on, so I told her the doctor had said I could leave. At which point she said "I hate doctors" she then told me what I would ACTUALLY be feeling-- lousy; how long I would be feeling this way--days; and what to do about it--indulge it. She gave me many many drugs (over the course of the approx 17 hours I was at the hospital I had, in order: valium, some unnamed sedative, general an, morphine, and vicodin, then codein to take at home. I didn't feel any better, but I was so high I really didn't give a shit..) Slept on and off in 1-3 hour spans for about 48 hours. Really hard to swallow until yesterday. This is apparently not from the surgery but from the intubation for the general an. Another effect of the general an is crap in your lungs that you have to cough up. This was hard until yesterday because of the incision pain and the tracheal swelling. Again, the doctor told me nothing about this, I got it from the nurse.
today I feel fine (4 days post op); still a little woozy even though I cut the drugs late Saturday. I can handle light housework and desk work, (like Mefi!), but remember that this was a surgery that cuts no major muscle groups so recovery is easier than abdominal, spinal or limb surgeries. The incision is small; a little bruising and swelling but otherwise not too scary looking.
Sorry for the long answer, but I hope it helps someone understand what's happening post op, since the medicals you'll meet will fall back on "it's different for everyone," which is not a helpful answer.
Last piece of advice for Hildegard: discourage friends who want to talk. My voice gives way after about 10 minutes of conversation. Energy is fine, but I'm really hoarse. This is another thing the doctor said would not happen. Should have asked the nurse!
posted by nax at 9:11 AM on December 17, 2007
Thanks a ton, nax. Great to hear about it from someone who's been there. Can't say I'm looking forward to this. :/
posted by Hildegarde at 10:22 AM on December 17, 2007
posted by Hildegarde at 10:22 AM on December 17, 2007
One of the things that I think is most pernicious in our society is the message that if you really, really, try, you can "beat" the cancer. The subtext is that if you get sicker and die it's because you weren't a real fighter. It's incredibly frustrating to her, and me. That would be the single message I'd send to anyone with a friend or loved one who is diagnose: be careful with those messages. Some people can survive cancer. Some can't.
That's one thing that always irritated me when talking about cancer, but makes me livid after going through it myself. Yeah, when I was diagnosed I had the fighter mentality, but I also recognized a lot of my chemo comrades had the same attitude and may not make it. I think we're all fighters, but all too often, people don't win. It's sad and not a slight against their efforts. This "you can beat it" strain of thought is really common in a lot of breast cancer communities, and it seems unfair for people in all likelihood might not beat it. It's doesn't sound pleasant because it's not.
I also don't know if you ever really "win", because you're always going to have battle scars to haunt you.
posted by kendrak at 2:47 PM on December 17, 2007
That's one thing that always irritated me when talking about cancer, but makes me livid after going through it myself. Yeah, when I was diagnosed I had the fighter mentality, but I also recognized a lot of my chemo comrades had the same attitude and may not make it. I think we're all fighters, but all too often, people don't win. It's sad and not a slight against their efforts. This "you can beat it" strain of thought is really common in a lot of breast cancer communities, and it seems unfair for people in all likelihood might not beat it. It's doesn't sound pleasant because it's not.
I also don't know if you ever really "win", because you're always going to have battle scars to haunt you.
posted by kendrak at 2:47 PM on December 17, 2007
when i had my tonsils and uvula out, i made sure i had a small whiteboard and a whiteboard marker with me when i was lounging around at home, because talking hurt.
posted by rmd1023 at 3:00 PM on December 17, 2007
posted by rmd1023 at 3:00 PM on December 17, 2007
*Warning, lengthy mush to follow maybe NSF the integrity of the snark factor on the blue
kendrak, glad to know you are surviving and my loving support on your journey.
gummi, so sorry to hear about your step-father's diagnosis. Perhaps the links included below may be of help to you and him? Sending you a cyber hug.
daniel9223, and love to you.
polyhedron, Even empathic people may not know what to say and may need some tips.
tkchrist and rmd1023, loved your examples, thanks. Some great bellylaughs. Thinking about dark humor, especially savagely dark humor when offered as comfort to a person with cancer, a necessary but unspoken ingredient would be the intimacy of friendship that existed before the joking around. It's easier to be kidded about brain damage or the "neutering" of the treatment for testicular cancer or an hysterectomy with removal of the ovaries when one knows one is loved as one is, even sliced and diced.
One of the great aspects of dark humor is that it addresses what seems too scary to talk about just plainly. To some degree I think that savage humor can, when part of an intimate friendship, be empowering to both sides. The overwhelming power of the illness is diminished by giving it a dose of absurdity.
Laughter can, unfortunately, also mask the fear, grief or sadness. Like how does a person really feel when, due to cancer, the treatment requires having body parts surgically sliced off or chopped out?
nax, Wonderful, practical comment. I really advocate anecdotal support, especially online groups, when it comes to dealing with medical situations. A wise, pro-active, outspoken, not intimidated by the doctors, patient-advocate nurse is pure gold.
Hildegarde, my loving support and good wishes as you go through your surgery. I extend a psychic teddy bear for you to hold. Ice chips can moisten your mouth post op. Drink lots of water in the days pre-op so your kidneys and liver are happy and able to handle the anesthesia more easily.
Everybody likes to hear they've lost weight though, right?
No, StickyCarpet. I guess you're joking but weight loss because of cancer is part of what precedes death and often accompanied by wracking nausea and vomiting, being unable to enjoy food due to chemo etc. The mother of a friend's sadly non-ironic final words before she died due to cancer were, "Thin, at last."
amberglow, "Try to keep a positive attitude" is, I think, largely what the people saying it want the ill person to do, for the sayer's emotional convenience, not for the ill person, who may need to cry jaggedly, be held, be comforted.
she's had a hard time talking to people about her diagnosis because even though she's the one that's dying, they're the one's bursting into tears.
jessamyn, so sorry to hear about your mother's diagnosis. My loving wishes to you and a cyber hug.
When metastatic breast cancer is diagnosed
And yes, it can be hard on the person with the diagnosis having to reassure others who are feeling the impending loss. But if others didn't burst into tears over this diagnosis she might feel uncared about. This site might be of help: it's free telephone therapy from a person who has dealt with that kind of cancer and intended to offer support both to the person with the cancer and family members: Cancer Hope Network
The opiates used in relieving the pain of cancer cause constipation. Tips: calcium-magnesium citrate tabs, two at night with lots of water throughout the day and glycerin suppositories, better than colace. Mega-glutamine raspberry for energy and nerve pain (and also lessening the nerve damage, neuropathy from chemo).
Patients' reviews of medications, a useful site: Ask a Patient, ratings on medications.
Cancer Treatment Centers of America is, as far as I've heard, the very best in cancer treatment, including Stage IV.
Cancer-Pain.org, excellent info about treatment of pain.
And an assortment of sites for anyone interested...
For those surviving breast or ovarian cancer in NYC, excellent site, started by Gilda Radner: Share Cancer Support
For complementary medicine that is well researched: Annie Appleseed Project
This page on breast cancer, Annie Appleseed Project
For gyn cancer support an info, this site is excellent, Eyes on the prize:
Life Extension foundation's - Suggested Foods and Supplements
Stages of cancer
Thank you all for your contributions to this thread.
posted by nickyskye at 4:56 PM on December 17, 2007 [1 favorite]
kendrak, glad to know you are surviving and my loving support on your journey.
gummi, so sorry to hear about your step-father's diagnosis. Perhaps the links included below may be of help to you and him? Sending you a cyber hug.
daniel9223, and love to you.
polyhedron, Even empathic people may not know what to say and may need some tips.
tkchrist and rmd1023, loved your examples, thanks. Some great bellylaughs. Thinking about dark humor, especially savagely dark humor when offered as comfort to a person with cancer, a necessary but unspoken ingredient would be the intimacy of friendship that existed before the joking around. It's easier to be kidded about brain damage or the "neutering" of the treatment for testicular cancer or an hysterectomy with removal of the ovaries when one knows one is loved as one is, even sliced and diced.
One of the great aspects of dark humor is that it addresses what seems too scary to talk about just plainly. To some degree I think that savage humor can, when part of an intimate friendship, be empowering to both sides. The overwhelming power of the illness is diminished by giving it a dose of absurdity.
Laughter can, unfortunately, also mask the fear, grief or sadness. Like how does a person really feel when, due to cancer, the treatment requires having body parts surgically sliced off or chopped out?
nax, Wonderful, practical comment. I really advocate anecdotal support, especially online groups, when it comes to dealing with medical situations. A wise, pro-active, outspoken, not intimidated by the doctors, patient-advocate nurse is pure gold.
Hildegarde, my loving support and good wishes as you go through your surgery. I extend a psychic teddy bear for you to hold. Ice chips can moisten your mouth post op. Drink lots of water in the days pre-op so your kidneys and liver are happy and able to handle the anesthesia more easily.
Everybody likes to hear they've lost weight though, right?
No, StickyCarpet. I guess you're joking but weight loss because of cancer is part of what precedes death and often accompanied by wracking nausea and vomiting, being unable to enjoy food due to chemo etc. The mother of a friend's sadly non-ironic final words before she died due to cancer were, "Thin, at last."
amberglow, "Try to keep a positive attitude" is, I think, largely what the people saying it want the ill person to do, for the sayer's emotional convenience, not for the ill person, who may need to cry jaggedly, be held, be comforted.
she's had a hard time talking to people about her diagnosis because even though she's the one that's dying, they're the one's bursting into tears.
jessamyn, so sorry to hear about your mother's diagnosis. My loving wishes to you and a cyber hug.
When metastatic breast cancer is diagnosed
And yes, it can be hard on the person with the diagnosis having to reassure others who are feeling the impending loss. But if others didn't burst into tears over this diagnosis she might feel uncared about. This site might be of help: it's free telephone therapy from a person who has dealt with that kind of cancer and intended to offer support both to the person with the cancer and family members: Cancer Hope Network
The opiates used in relieving the pain of cancer cause constipation. Tips: calcium-magnesium citrate tabs, two at night with lots of water throughout the day and glycerin suppositories, better than colace. Mega-glutamine raspberry for energy and nerve pain (and also lessening the nerve damage, neuropathy from chemo).
Patients' reviews of medications, a useful site: Ask a Patient, ratings on medications.
Cancer Treatment Centers of America is, as far as I've heard, the very best in cancer treatment, including Stage IV.
Cancer-Pain.org, excellent info about treatment of pain.
And an assortment of sites for anyone interested...
For those surviving breast or ovarian cancer in NYC, excellent site, started by Gilda Radner: Share Cancer Support
For complementary medicine that is well researched: Annie Appleseed Project
This page on breast cancer, Annie Appleseed Project
For gyn cancer support an info, this site is excellent, Eyes on the prize:
Life Extension foundation's - Suggested Foods and Supplements
Stages of cancer
Thank you all for your contributions to this thread.
posted by nickyskye at 4:56 PM on December 17, 2007 [1 favorite]
Nice post. You know, I’ve always thought there should be a death and dying class in school. It’d probably be as contentious a topic as sex ed.
But it seems like it’s an absolute inevitablity that, not only no one is prepared for, but few people even talk about. We all have to go sometime. Sounds flip, but it’s true, and it’s something almost no one is ever prepared for, by anyone.
(I’ve been dead once already, so I’m a bit more attentive now)
I think that’s compounded by the fact that so few people die at home anymore. Hospices are great. But it still seems like a thing apart. Or perhaps it’s families that are apart. Even if someone is in hospice, you might have to fly out to see them or something kind of thing. Whereas you might have to fly out again for the funeral, and that much travel can be a hardship on some folks (cost, time, whatever) so you might (tragically) have to wait for the funeral to go see someone.
And the whole beating it thing - you might, you might not. Doesn’t really matter if you are (or your loved one is) not prepared to die because again - it’s going to happen.
But either way, it seems like many people refuse to talk about or confront (or in some cases account for), not only other folks mortality, but their own as well.
Lots of people don’t have wills or have even discussed DNRs, etc.
Seems like a lot of whistling past the graveyard. You can do your absolute best to fight something. Use whatever you know. Use everything you know, and still lose. And whether it’s now or later that will happen. So people should be prepared for it. I’d say prepare yourself.
But it’s a shame that so many of us have to prepare ourselves and learn such an important thing as how to die or how to see someone we love die in such a haphazard way. You can’t prepare yourself for the emotional shock, no one can, but there are methods to cope and heal and accept. Those, for some reason, perhaps fear of loss, we often leave to chance.
posted by Smedleyman at 4:59 PM on December 17, 2007 [1 favorite]
But it seems like it’s an absolute inevitablity that, not only no one is prepared for, but few people even talk about. We all have to go sometime. Sounds flip, but it’s true, and it’s something almost no one is ever prepared for, by anyone.
(I’ve been dead once already, so I’m a bit more attentive now)
I think that’s compounded by the fact that so few people die at home anymore. Hospices are great. But it still seems like a thing apart. Or perhaps it’s families that are apart. Even if someone is in hospice, you might have to fly out to see them or something kind of thing. Whereas you might have to fly out again for the funeral, and that much travel can be a hardship on some folks (cost, time, whatever) so you might (tragically) have to wait for the funeral to go see someone.
And the whole beating it thing - you might, you might not. Doesn’t really matter if you are (or your loved one is) not prepared to die because again - it’s going to happen.
But either way, it seems like many people refuse to talk about or confront (or in some cases account for), not only other folks mortality, but their own as well.
Lots of people don’t have wills or have even discussed DNRs, etc.
Seems like a lot of whistling past the graveyard. You can do your absolute best to fight something. Use whatever you know. Use everything you know, and still lose. And whether it’s now or later that will happen. So people should be prepared for it. I’d say prepare yourself.
But it’s a shame that so many of us have to prepare ourselves and learn such an important thing as how to die or how to see someone we love die in such a haphazard way. You can’t prepare yourself for the emotional shock, no one can, but there are methods to cope and heal and accept. Those, for some reason, perhaps fear of loss, we often leave to chance.
posted by Smedleyman at 4:59 PM on December 17, 2007 [1 favorite]
I was at a funeral for one of my cousins. We’re a pretty close family, and we’re huge really. We’re telling old stories, me and my other cousins and getting into stuff we used to do together when we used to grow up. And that circle is getting tighter, you know, people close to him, friends, family, whatever. All the people who knew him best and had stuff to say about him.
And we’re around the casket and my auntie is crying and everyone is pretty somber and saying how great he was, what a good guy he was and how we loved him and we’ll all miss him.
And my aunt she says “He was the best kid. The best. God always takes the best.”
And I look at my cousins and his friends, everyone who is around the casket and alive and I said “So...what are you trying to say here Aunt D?”
Broke everyone up.
posted by Smedleyman at 5:07 PM on December 17, 2007
And we’re around the casket and my auntie is crying and everyone is pretty somber and saying how great he was, what a good guy he was and how we loved him and we’ll all miss him.
And my aunt she says “He was the best kid. The best. God always takes the best.”
And I look at my cousins and his friends, everyone who is around the casket and alive and I said “So...what are you trying to say here Aunt D?”
Broke everyone up.
posted by Smedleyman at 5:07 PM on December 17, 2007
Smed: I’ve always thought there should be a death and dying class in school.
I actually did have such a class my senior year of HS. It was called Thanatology and we read Elizabeth Kubler Ross and learned about Hospices for the terminally ill and the five stages of the grieving process: Denial, Anger, Bargaining, Depression and Acceptance (DABDA).
This was an all boys Catholic HS so the curriculum, although rigorous wasn't exactly visionary, but somehow they offered this elective for seniors. It helped when a close friend took his life a few years ago. Having a more or less accurate roadmap for the grieving process helped enormously.
posted by Skygazer at 6:05 PM on December 17, 2007
I actually did have such a class my senior year of HS. It was called Thanatology and we read Elizabeth Kubler Ross and learned about Hospices for the terminally ill and the five stages of the grieving process: Denial, Anger, Bargaining, Depression and Acceptance (DABDA).
This was an all boys Catholic HS so the curriculum, although rigorous wasn't exactly visionary, but somehow they offered this elective for seniors. It helped when a close friend took his life a few years ago. Having a more or less accurate roadmap for the grieving process helped enormously.
posted by Skygazer at 6:05 PM on December 17, 2007
Skygazer - I had wait until college to take a class. Read the same stuff though (Elizabeth Kubler Ross).
Seems like it should be a class for younger adults. Not surprising it was at a Catholic school. Religion seems to confront those issues more often. I’d like to see it in a secular setting. But again, wow that’d probably be tough to wrangle.
posted by Smedleyman at 1:27 PM on December 18, 2007
Seems like it should be a class for younger adults. Not surprising it was at a Catholic school. Religion seems to confront those issues more often. I’d like to see it in a secular setting. But again, wow that’d probably be tough to wrangle.
posted by Smedleyman at 1:27 PM on December 18, 2007
My aunt died back in October from breast cancer. There are many things I did wrong with dealing with her before her death, I wish I had read these sort of articles before she died. The these things weren't intentional of course, but done with a profound lack of understanding of what it means to lose someone so close you. The idea her not being there was just so inconceivable that my brain literally couldn't accept the reality. In many ways it still can't, as I reorganize photos in and stumble across photos of her and smile and think "Oh I should call her to see how she's doing" and then have to do a double take and my brain still has to actively been told, "no, she really is gone."
This is what I would have done differently:
Hung out with her more, made idle small talk, told her of my day and whether it was good or bad, about the stupid office politics, that cool new place I discovered for lunch, that funny bumper sticker, the squirrel that seems to have moved into the walls of our house and is ignoring the eviction notice, our crazy next door neighbor, how long it stayed warm in Savannah this year, the movies I really want to see, whether I should paint my office green or blue, the silly antics of her teenage niece, discussed who should be president, mocked Fox news, bitched about the current US administration, asked for advice on what to get my wife for Christmas, teased her about her crazy sisters and a hundred other stupid things, small and large. Somewhere in there I would have asked cancer, of course, but I wouldn't have focused on it. I think treating her as I normally would, as a person, would have been better. I think when people are dying and know they are dying, they appreciate reveling in life in all it's mundane glory.
posted by Brandon Blatcher at 5:46 AM on December 19, 2007 [5 favorites]
This is what I would have done differently:
Hung out with her more, made idle small talk, told her of my day and whether it was good or bad, about the stupid office politics, that cool new place I discovered for lunch, that funny bumper sticker, the squirrel that seems to have moved into the walls of our house and is ignoring the eviction notice, our crazy next door neighbor, how long it stayed warm in Savannah this year, the movies I really want to see, whether I should paint my office green or blue, the silly antics of her teenage niece, discussed who should be president, mocked Fox news, bitched about the current US administration, asked for advice on what to get my wife for Christmas, teased her about her crazy sisters and a hundred other stupid things, small and large. Somewhere in there I would have asked cancer, of course, but I wouldn't have focused on it. I think treating her as I normally would, as a person, would have been better. I think when people are dying and know they are dying, they appreciate reveling in life in all it's mundane glory.
posted by Brandon Blatcher at 5:46 AM on December 19, 2007 [5 favorites]
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In most cases, agreed. With my brother, it was a pretty funny ice-breaker.
Luckily, I'm still funnier than him.
posted by hal9k at 10:09 AM on December 16, 2007