This is not a “WAAAAH MY MOMMY IS DYING” thread, and this is one of many, many Internet resources I’m using so don’t be like me and say “why are you consulting a message board for serious life advice” posts (which I do all the time because I am a dick and now here I am too), and I’m not looking for sympathies or prayers, just some practical advice from any dopers who might have gone through this before.
Skinny is my 84 year old single Mom was suddenly diagnosed with colon cancer + cancer on the liver the docs pretty much made it clear it wont be cured. They are recommending chemo AFTER one of two options:
Bypass the cancerous mass in the colon with a colostomy bag, what they say is a 45-60 minute “little” operation and will get the “vomit tube” out of her mouth and nutrition in her system ASAP
Remove the mass and re-connect the intestines but still, wont remove the cancer, a longer procedure and much riskier, and more days in the hospital.
Me, my sister, my aunt and my Mother voted for option 1.
Setting the chemo aside which I am trying to encourage her to at least try, the hidden message Im getting from the sawbones is my Mom is fucked, so the sooner she can leave the hospital and remove the vomit tube, and at least eat at home, the better. Basically a double shit-sandwich no matter which way you look at it.
Insurance and affairs, all seem to be in order.
I can provide more info as needed the problem is all this took place within the last 36 hours just looking to get as many perspectives as possible as I slowly remove the sledgehammer from my head!:smack:
Has your mother accepted the fact that this is terminal?
As in: you MAY see Christmas 2016; you will not see Christmas 2017?
If see knows this, the hard part is done.
Another vote for “Get out of the damned hospital and live what time you have left”.
Unless there has been massive improvements in chemo, I’d suspect it is more of a “See - We’re Treating you! Doesn’t that make the hair loss, vomiting, fatigue, et al much better?”
Get real numbers from real doctors - get real “X% chance to 2 years without treatment” vs “Y% with chemo”.
Both of my parents were heavy smokers. Mother fought it and made “3-4 months” into 8 months. Not certain she thought it was worth the trouble and pain of chemo+radiation.
Father folded on the spot.
Here is my experience.
My Mum was a sprightly 82 year old when she was suddenly diagnosed with bowel cancer.
She stayed cheerful through the tests, which showed it was terminal (within a couple of weeks.)
She had two options:
get aggressive treatment (chemo and operations), which would be hard to take (to prolong life for about 6 months, butno guarantee of success)
go into a hospice and pass away peacefully within a week
She chose to go into the hospice.
Friends and family visited and my brave Mum even planned her own funeral. (She asked me to give her eulogy.)
We also arranged a funeral and she checked her will (vital to avoid complications.)
Here in the UK, you need to notify various authorities when a death occurs. I found it helpful to have planned that in advance, since on the day itself it’s hard to concentrate.
Looking ahead, may I tell you about my further experience?
When Mum passed, I was absolutely shattered (it had all happened so fast from good health downwards.)
I found it a great help to go to a grief counsellor.
There are several stages of grief, each with strong feelings (such as despair, anger and depression.)
This is going to be a bit long but you asked for my opinion.
First thing: DON’T PANIC - don’t be pushed into a too-hasty decision. You, or rather, your mother, can take some time to digest the news and consider her alternatives. Don’t let her be bullied by aggressive medical personnel in any direction, whether that’s for or against aggressive treatment. Ditto for relatives, friends, and well-meaning strangers.
When my father was diagnosed in his mid-80’s with lung cancer he, too, was told his case was terminal. He was offered both radiation and/or chemo but decided for quality over quantity. He did not treat the cancer but instead went home, took the hospice option, and died at home with family members next to him rather than in a hospital. For him that was the right choice.
My father-in-law died of bone cancer. Or more specifically, a recurrence of bone cancer that had previously sent into remission for a couple decades. The first time around he opted for aggressive treatment and surgery and got more healthy years of life. The final round, though, he was much older and it had already metastasized extensively. His last few years were spent in and out of hospitals involving chemo and surgery, but finally he, too, stopped treating the cancer, went palliative care, and died at home with family around instead of medical personnel. For him those were the right choices.
The question is, what is the right choice for your mother?
Cancer doctors are inclined to “treat the cancer” - surgery, chemo, radiation. ALL of those treatments can be painful and make the patient very miserable and do things like damage various organ systems (heart, lungs, kidneys, etc.) or cause impairments (deafness, vision problems, etc.) depending on the treatment, what’s being treated, and so forth. It’s one thing to undergo the misery of chemo or radiation if the pay off is living cancer-free for awhile, but if that’s not possible that can be an awful lot of misery to put a person through for just another week or two, or a month or two, that will not be spent in good health.
Hospice doctors don’t pretend to cure anything - it’s about making the patient comfortable in the last few months of life to the extent that’s possible. So the patient might be physically more comfortable although death might come sooner - or not. Pain medications will be offered, so will anti-anxiety ones if that’s helpful, but the patient is on a lot less drugs, if any. Surgery might be offered if that will ease a problem (like not being able to eat/lots of vomiting, or in my FIL’s case to decompress his spine so he could walk again for a few months) but no one will pretend it’s curative. One problem with hospice is that eventually there will come a point where something or other will go wrong and you will find yourself wanting to yell DO SOMETHING!!! and the hospice won’t - because you’re allowing death, you’re no longer struggling tooth and nail to prevent it and that can be very hard for someone raised in our society with its metaphors of battling cancer to do. As an example, at some point the patient’s kidneys might fail, but they won’t be taken to dialysis, they’ll be allowed to die. Or they’ll catch pneumonia and instead of aggressive treatment in an ICU with respirators and stuff the patient will be allowed to die. This will probably be more difficult for you, the family member, than for the dying patient.
As someone who has sat at the bedside of a dying parent and held her hand as she breathed her last I have a lot of good things to say about hospice but at the same time it can be emotionally very difficult for those standing by and watching their loved one die. Hospices sometimes wind up doing more to take care of the family (via counseling and the like) than the patient dying, but that can be a very valuable thing, too.
OK, here’s the advice part, use what’s useful to you and disregard the rest:
Any time the cancer docs argue for a treatment YOU (or the patient, the patient’s advocate, whoever) be insistent on asking questions: - What, exactly, will this do to benefit mom?
— It’s not going to cure her, she’s terminal
— Is it going to let her eat/go to the bathroom/relieve pain/what?
— What are the outcomes to this treatment?
------ Odds of success?
------ Potential side effects?
------ What happens if it doesn’t work? - How much pain and suffering is involved in recovery? - What on-going side effects will she experience from this?
— Permanent disability of some sort?
— Fatigue? (When you talk about “fatigue” from cancer treatments it’s not just being a little tired, it might well mean “too weak to sit up”)
— Inability to eat or drink normally? (which may happen anyway) - At what point do we stop aggressive treatment?
If/when you elect to go to hospice as the following questions: - What, exactly, will this do to benefit mom? - What are our options?
– home hospice with respite care vs. inpatient (I will note: my sister is a doctor and we still found caring for a dying patient at home difficult. You may want to do it that way, but not every family can.) - What should we expect along the way?
— Dying is a process but certain things tend to occur
— At a certain point many if not most dying patients stop wanting to eat or drink. This is the point many non-hospice doctors start pushing feeding tubes but lack of desire to eat or drink is actually normal when the end is near and hospice discourages feeding tubes because at that point they only prolong things at best. If the entire digestive tract is shutting down forcing nutrition is pointless because the body isn’t processing it anyway. - What support is there for the family?
Commentary on your OP (yes, I’m almost done)
The only “little” operation is one someone else is having. Yes, for the doctors it is simple and routine but not for you or your mom. This is where asking “how is this going to benefit mom?” and “What on-going side effects can we expect?” Sounds like mom has a blocked intestine and this will bypass the blockage and bring some symptom relief. Of course, that also means a colostomy bag for the rest of her life. If mom finds that tolerable, great - and it sounds like she already made that decision.
Uh, huh - and how long to recover after she leaves the hospital? Remember, she’s an 82 year old woman, she has at least one major health issue, getting sufficient nutrition to really heal well might be an issue with a shortened intestine, and how is that going to affect the remainder of her life? I realize you’ve seem to have decided against this already, but this is a situation where, potentially, it might to take longer to fully recover from the proposed surgery than the patient is expected to live.
Just remember that as long as mom is concious and competent hers is the deciding vote. It sounds like everyone is talking, though, which is good. Ask mom about what she does and doesn’t want going forward so if/when she isn’t able to speak for herself you’ll know what she wants. You may have to make some hard decisions, it helps a LOT if you know what mom wants/wanted.
OK - WHY are you encouraging mom to try chemo?
Again - how is this going to benefit mom? What, exactly, will the chemo do for and to her? Is it going to prolong her life? If it does, at what cost? What is the point of chemo in her case? Will it debulk the cancer mass? Or is surgery a better option for that? Chemo is often painful and debilitating, it can, in fact, be worse for that than cancer, depending on what type of cancer and where it is.
Is chemo going to actually do anything to help your mom, or is it doing something for the sake of doing something? At this point it sounds like it’s not going to cure her so what will it do for her? (or to her?)
Finally - yes, it does sound like your mom is, in a word “fucked”. If the cancer doctors are giving you that message then yes, it is almost certainly that bad. I’m very sorry to say that, but you need to deal with truth right now. She might be beyond most medical help at this point (aside from the surgery to “get the vomit tube out of her mouth” and some symptom relief) and you should probably at least talk to someone from a hospice. Talking to a grief counselor is also a very reasonable thing to consider.
Another vote for “get out of the hospital and enjoy the time you have left.”
And its hard to enjoy what life you have left on chemo. Life - quality over quantity.
Broomstick’s questions are excellent. I’ll add one piece of advice - try and get it told to you straight. The doctors treating seldom tell you straight. Sometimes the nurses are a little more forthcoming. If you have a friend who is a nurse - ask them. Doctors like to treat, and they like to give you some option to do something - because doing “something” might make everyone feel better. Everyone dies - and your mother is dying. At this point the question is really “how comfortable can we make this for the most people.”
I’m sorry, its so very hard to go through for all of you. I wish sympathy did more.
As someone who’s gone through chemo for colon cancer (still am, fwiw, though there are signs it’s going into temporary remission again), there are some drugs that are really hard on the system and some that aren’t. The platinum-based chemo drugs (any drug ending in -platin) are one of the first lines of defense and do an awesome job fighting the cancer, but can have nasty side effects. There are, however, other chemotherapy drugs that are not as aggressive but also don’t do as much damage. Talk to your mom’s doctor and see if you can get her on one or more of those - they may not work as well as the aggressive ones, but they may give her more time without the issues.
Also - when I was diagnosed in June 2015, the doctors didn’t give me a time frame but told me it was inoperable and that they would try to buy me as much time as possible with chemo/radiation. I took this to mean “We’ll do what we can, but you will probably be dead by the end of the year”. I was wrong - it’s been almost a year and a half now and I’m doing really well so far. The average time from diagnosis of stage IV colon cancer to death is 28 months or so, but I have every reason to believe that, barring a nasty mutation of the cancer, I’ll beat that by a year or more. The point is, a cancer diagnosis, even an advanced one, is not necessarily an immediate death sentence. If I had elected not to treat, it would have been - my colon was not completely blocked but it was close, and the inability to rid oneself of waste is not really compatible with life.
Yeah, but it’s good to have all the family in agreement. My grandmother’s end of life protocol was initially chosen by her, ratified by her daughters, and kept being renewed yearly; we all agreed on “no heroic measures, no hospital at all if possible, no treatment for anything other than pain and trauma.” When so much as a single immediate relative disagrees, things can get real bad real quick.
Make sure that you understand all available options clearly, and remember that it is her life - it is for her to decide and, if and once she gets to the point where she can’t, for you all to keep the treatments on the track she chose. Note that this advice works for people who haven’t been diagnosed with cancer as well.
My grandmother was diagnosed at an advanced age with pancreatic cancer. The doctors basically told her she had about 3 months to live. No treatment options, palliative care only. She really sort of had to fight to try treatment. She lived for 21 months, feeling good right until the last few weeks of her life. In fact, she slipped on the ice outside the doctor’s office, broke her hip and came back from that while in treatment. Her philosophy was that if she was healthy enough for chemo, she wasn’t really sick. It worked for her.
My father was a non-smoker who had inoperable non-small-cell lung cancer. He did radiation and chemotherapy, and lived for about 18 months. He, too, was relatively healthy up until the last month or so of his life.
Not a terminal diagnosis, but my sister had breast cancer and thyroid cancer in the same year. For the breast cancer she had 3 surgeries, radiation and chemo. She felt tired during the chemo, but not nauseous - they do a much better job controlling that now. But she was much younger than your mom, so take that with a grain of salt.
My condolences for both your mom and your family. Watching a loved one go through the end of their life is very hard.
I second this, and would like to comment based on my dad’s experience with a colostomy. The doctor has described it as a “little” operation that doesn’t take too long, but it’s also gong to involve pain and a period of recovery. Your mom will also have to learn how to live with a colostomy. It isn’t rocket science, but there are skills to be acquired, and she’ll have to do it while being sick.
Yet another vote for quality over quantity. That’s what my dad chose. He was diagnosed with terminal cancer last November, declined any treatment other than palliative care and passed away in May at the age of 86. He died peacefully, at home.
Others have said that it can be very difficult for family members and I can attest to that. I moved in with my parents in December to help out. It was hard watching him grow weaker and weaker. My mom and I had a lot of support from other family members, and the hospice nurses were wonderful. I don’t know how they do it, I couldn’t do that for a living.
I don’t really have any advice other than to recommend you read Broomstick’s excellent post again and do like she says- ask the doctors what chemo will actually do for your mom. My condolences in this extremely difficult time.
Broomstick thank you for your post I did learn a lot from it and appreciate you are being as opinionated here as you are in The Pit, and don’t think because of your thoughtful comments here Im not going to come at you there in the future you magnificent bastard!!!
I hope I didn’t give the impression I’m “pressuring” her into chemo. I accept it’s her life and her decision to make.
I guess two updates: she just came out of surgery tonight, with all goals met, and about 3 weeks before all this happened my half-sister and my mothers only two grandchildren moved in right next to her which seemed to put an extra bounce in her step.
Right now I feel my job is to try and keep everything as positive as possible in the light of eventually a no win situation. Look Mom you get a new colostomy bag but get to eat again etc etc
So for right now as ugly as chemo may or may not be, I don’t THINK my mother is ready to give up just yet. We haven’t had time to have that chat with all that has been going on the past 72 hours, but for right now the message is get the vomit tube out, get out of the hospital, get home, and then re-evaluate treatment options before deciding to take the ride on the ice flow.
As for “trying the chemo” all I’m saying is I think trying at least one or two rounds and feeling the side effects before deciding on hospice is at least an informed decision. Odds are, the side effects might suck, though I have no stats. But there’s the 1 let’s say 10 chance she has minimal side effects, it reduces the cancer significantly, and she can spend an extra year enjoying her family and getting affairs in order. I’m no gambler, but that’s what I would do and hope that’s the choice she makes. If not, and she decides on no chemo, I will have no choice in the matter as she is of sound mind and will support her 100%.
Besides, she’s my mother, if she can stay alive a little longer in fairly reasonable comfort, why would I not encourage that if she asked me my opinon?
Maggie the Ocelot’s post is a good one, and she’s the one with personal experience regarding chemo for colon cancer.
Chemo varies a lot - I’ve known people on basically indefinite chemo to control a cancer that’s not curable who have relatively few side effects. I’ve known people who stopped chemo because they found it intolerable. Most people fall in between and as Maggie points out different types of chemo have different effects.
Doctors don’t like to give time frames because they can’t, not really. They can give statistics, but people are variable. One person might live six months with a particular type of cancer, another might live 5 years. What one person considers intolerable another considers an annoyance and vice versa.
Russian heel, I don’t want to come across as anti-treatment - if chemo or radiation will suppress your mom’s cancer for a time and give her more time on this earth that she can enjoy by all means, go for it. Just be sure she knows the risks vs. benefits so she can make an informed decision.
My MIL was diagnosed with an aggressive type of lung cancer and was given a year to live. She looked the doctor in the eye and said, “A year isn’t long enough for what I need to get done!” She chose to treat her cancer, listened to the doctor, got second opinions and went with what ever treatment she felt appropriate after weighing the options.
She beat the doctor’s prediction and lived for almost five years after her diagnoses. Even the doctors were amazed.
She went through chemo and a couple of surgeries where they removed parts of her lungs. She had her ups and downs. Had all the classic chemo side effects and the surgeries slowed her down for a while. But what I remember the most was her attitude through it all. She stayed absolutely positive, yet still could acknowledge that she was going to die from this. She always said that she will know when it was time to die and she wasn’t going to fret about it before that time arrived. I also want to mention that she wasn’t in denial at any point in time. She would talk openly about her pending death, even though it made some of the family uncomfortable.
She wasn’t out running marathons, but still managed to stay active up until the last week of her life. The day before she died, she ended up in the hospital. When we went to see her, she told everyone that the time had come and said her goodbyes to everyone. The doctor released her the next morning at her request and died that evening.
What I will always remember about the whole ordeal was her positive attitude and how it seemed to keep her going. It was contagious as well. Some of her family wanted to sit next to her and cry and so on, but she would just tell them to save the tears until she was gone, she wanted to be surrounded by happy, supportive people not “debbie downers” as she would say.
Since that time, I have known other people diagnosed with cancer. And what I see is that the people who accept it as a death sentence seem to go a lot quicker than the people who accept it and then continue living their lives, rather than waiting for death to take them. Maybe it’s just me, but that has been my observation.
Broomstick’s post was truly excellent but many of the questions would be hard to answer.
First, the cancer needs to be staged and graded to find out how treatable it is. If it has metastasized (spread), surgery is less likely to help. Chemo and radiation have significant side effects.
If your mother feels her quality of life is high and is competent to understand the issues, she may wish a more aggressive approach. Or not. If the surgery is for palliation it makes more sense to me to keep it simple, but the grade, stage and primary site are relevant.
I don’t think there is enough info here to guide you. Broomstick asks the right questions, but a hospice may want to know that more aggressive treatment is unwanted or unlikely to help.
I’m with Broomstick on asking lots of questions to the doctor. I would ask the doctor if there is a likely curve and if there are any indications of where you mother is on the curve.
As Broomstick posted, your mother needs to decide how much the treatment is worth in terms of discomfort, fatigue and pain.
We went through exactly this with my father. We were given two extremes; we looked at all the options, and what chances there were of success. The doctor had the answers but didn’t volunteer them until asked. You really need to be very proactive.
You quoted some odds, but I wasn’t sure if those were ones you made up or what the doctor said. All of that is far game to ask.
Ask what the odds are with and without treatment. The mean life expectancy and what the curve looks like (if they know). Ask what percent of patients have side effects. What percent have severe, medium and little.
With my father, we wound up taking a middle road. I suggested that to the doctor and he agreed.
My uncle decide with his cancer that he didn’t want treatment other than pain management.
My comments and experience have nothing to do with colon cancer, but everything to do with a terminal illness.
My wife’s behavior started to change when she was 42 years old. I thought that she was simply depressed and needed in-patient treatment, so I had her admitted to a mental care facility. After evaluation, the physicians told me that it was probably due to an organic cause and asked to do a brain scan and biopsy.
The results came back quickly: anaplastic astrocytoma in the frontal lobe. As soon as I heard this, I knew my wife was terminal. I could expect her to live for about 18 months.
She actually survived for 30 months, following chemo and radiation treatments. She died at the age of 44.
What was most tragic in her case was that, contrary to what one sees on TV and in movies, she was not cheerful, upbeat, and wise (?) as the condition progressed. Instead, she simply drifted away, becoming more child-like and apathetic. For the last 24 months, she was simply “someone else.”
My advice is to treasure every moment when the person you care for is still that person. Whether due to pain or the progression of the disease, that might be taken from you tomorrow, or the day after that, or the next. I don’t know what the last thing I said to her was. She drifted into a coma and that was that.
It sounds like everyone is talking, though, which is good. Ask mom about what she does and doesn’t want going forward so if/when she isn’t able to speak for herself you’ll know what she wants. You may have to make some hard decisions, it helps a LOT if you know what mom wants/wanted.