What to expect, and how to deal?
December 10, 2012 2:02 AM   Subscribe

My mother was diagnosed with stage 4 cancer in May this year. We've just been told she now has 6 months to live. Help me with what to expect.

I'm not even sure what I'm asking here, but here goes.

My 47 year old mum was diagnosed with stage 4 cervical cancer in May this year. They then discovered it had spread to her lungs and lymph nodes. She's been through intense treatment this year, including extensive and invasive radiotherapy (which she can no longer have as her body can't handle any more) and several types of chemotherapy. Last week we got the results of the scans she had to see how her treatments had gone so far. The tumours have doubled in size, nothing has worked, her doctors have given her 6 months.

I'm 24 and never had to deal/experience the death or illness of a close family member or friend before. I've been seeing a psychologist this year to come to terms with some difficult issues from the past involving her, so I am much more at peace with her and the fact she will pass away soon. What I don't know however is the whole physical side of it. What exactly happens when someone stops treatment for cancer? How do they deterioate physically, especially in the way of lung and cervical cancers? In my head I think of how AIDS normally kills through pneumonia etc - is it an immune system failure that will end up taking her, for lack of a better phrase?

I know this all sounds very morbid and any information I try and brace myself with now may well go out the window once the time goes. I live two states away from her (3 hour flight then 4 hours driving), so I won't be there the whole time to see her go through this, which I think makes it worse because once the family says "it's time, come up" it's going to hit me hard seeing her in whatever state she may be in.

FWIW I am going up at Christmas, having not seen her since July, and will be there for her during any time off she wants to take with the family next year, however long that may be. It's more the actual moment where she may be admitted to hospital and we just have to sit around and wait that I don't know what to think of.
posted by sunshine arakhan to Health & Fitness (22 answers total) 4 users marked this as a favorite
I'm so very sorry you are going through this.

The answers to my question about my grandmothers death earlier this year helped me greatly, even though she was twice your mums age. I hope some of those answers help you too.

You are in my thoughts.
posted by malibustacey9999 at 2:28 AM on December 10, 2012

Be prepared to not be prepared. One family member with brain cancer outlasted the doctor's estimate, and although we didn't want to see him go, the not knowing was really hard, especially for his immediate family. Their worry it would be sooner turned into the much more difficult stress of anticipation, the strange twilight of thinking of him as both here and gone at the same time.

But in general, this family member was the most cheerful of the lot, a lot because he came to terms with the situation much more quickly than the rest of us -- he felt like he had lived a full and happy life and he smiled and joked up until the last day or so. He was relieved more than anything when his treatments were over. Eventually, they set him up in a hospital bed at home with multiple daily home care visits and he died at home. This created a weird psychic energy for his wife, who is still coming to terms with her husband's passing. She eventually moved.

Your question isn't morbid at all. It's good to think these things through and be open to the unexpected. I'm sorry your family is going through this.
posted by mochapickle at 2:32 AM on December 10, 2012

Here it is. There is no normal. Frankly, six months could mean anything.

I'm a little too close to this right now. My Dad just passed away from another insidious disease. But I'm very close with a family where the Mom is terminal after having lived with Stage 4 colon cancer for over five years. I watched their sons grow up, have spent more time with them over the last decade than my own family doing practical, normal, fun, weird things. We'll be having pizza together in two days. I've spent most of the past week with them.

Through the journey, she's had multiple prognosis' depending on the currently most aggressive tumour. Once only having two weeks before they figured out the tumour in the heart might be surgically removed.

But she's wearing down. Looks relatively healthy externally. Opportunistic infections are starting to set in. She just spent four days in hospital for IV antibiotics and will discharge tomorrow. There's a new tumour on the roof of her mouth that seems particularly aggressive. The other brain tumour is thought to be relatively managed and there's nothing to be done with the ones in her lungs. Chemo and radiation are a bitch, but don't have to be isolating.

So it sucks, but it's odd that the cancer itself isn't likely to be the end of her. It will be something secondary and likely rapid once it sets in. The current thinking is she's at weeks or a month or two at this point. But the doctors won't say. It's all about quality of life now.

There's no predicting this thing called cancer. I'd be spending as much time, or at least communicating, with your Mom as much as possible. Honest, open and normative stuff. She's still your Mom and loves you and will always want the best for you.
posted by michswiss at 2:41 AM on December 10, 2012 [2 favorites]

I'm sorry you are going through this. Make the most of this Christmas visit! What I can tell you is that doctors really can't predict when someone will die. The body goes when it goes.

With my mother, she was given 6 months to live, but actually lived about 6 weeks because once there was nothing holding the cancer back at all, it just raced through her body.

About 36 hours before she died, she started being less able to communicate because the cancer started growing as a tumor in her brain. She was in a lot of pain, even though they gave her morphine basically on-demand in an IV drip.

About 24 hours before she died, she said she'd like a hamburger. It was her birthday and she was dying, so whatever with the hospital food. I got her the best hamburger that could be had, but she only had a bite or two because peristalsis had stopped. At that point, there's no hunger, and you can't digest anything.

About 18 hours before she died, her lungs started to fill with fluids and the doctors said that it would be only an hour or so, but she held on in that terrible state, basically drowning, for 18. Her fingernails and toenails turned blue. She was very cold. One by one her organs failed, so that's how she died. Very technically, like on her death certificate, it says she died of "metastatic breast cancer" because the organs and brain stopping is just a natural outcome of that.
posted by Houstonian at 3:28 AM on December 10, 2012 [2 favorites]

I'm sorry for your news.

My friend's mum has recently died of cancer. When she was diagnosed her cancer had metastasised and she was given 6-12 months to live. I think she ended up lasting 15 months through luck and willpower. I will let others speak about the physical deterioration, but as an infrequent visitor who saw her two weeks before she died she was still mobile, but weak. The deterioration was rapid, and her she and her family knew when things had moved from difficult to imminently terminal.

If I may, I'll take a tangent. The thing that impressed me was how she and her family handled things was how practical they were. My friend's mum devoted her last few months to sorting things out after she had gone. She raised $15,000 for the charity that supports research into her cancer with a cookbook she put together, by mining the huge goodwill she had. She helped her husband - who is quite old school and was not domestically minded - organise his life after her death: where he would live (because he wanted to downsize), teaching him how to cook, bringing all the paperwork up to speed, discussing her will with her family, even planning her own funeral. She also set her heart on hitting certain family milestones - wedding anniversaries and birthdays. She ticked things off lists, closed chapters, spent time with family and friends, said her farewells. She "managed" her illness, in the sense of managing how her final months played out.

These things gave her tremendous purpose in her final months when otherwise she would have sat at home and been the target of a lot of wellmeaning, but fairly depressing, sympathy. I'm sure she had moments of self-pity privately, but she actively pursued a strategy of not giving into to it. It gave her something else to not only talk to people about and them to her, but also a reason to proactively engage with the world. She wasn't losing her mind; it was her body that was failing her.
posted by MuffinMan at 3:31 AM on December 10, 2012 [16 favorites]

As has already been said, the progression will not be very predictable. 'Six months' is going to be a ballpark approximation, and a very big ballpark at that. Stay in contact with her starting now, not just when "it's time."

I've lost 2 people to lung cancer in the last few years -- one elderly, and one about your mum's age. (Also a dog, which seemed surprisingly similar). In these cases that I saw, the lung cancer made it progressively harder to breathe, and therefore to do much of anything. In the case of the elderly aunt, she was in Hospice and receiving drugs to help calm her anxiety about not getting enough air. I saw her very briefly a day or so before she died, and it was a struggle for her to speak even a few words, which is why I'm suggesting you spend quality time with your mother earlier rather than later.

We also lost a young friend to colon cancer about a year ago. Chemo was working for her, and it seemed like she might live for years at a sort of detente with the disease. Then a sudden and unforeseen event necessitated emergency surgery, which failed to prevent an infection, which demanded drugs which would've conflicted with the chemo, and that was it; her life expectancy went from indefinite to six weeks, and she lasted about 2. So again, it's just not very predictable. Make the best of the time when it doesn't seem urgent.
posted by jon1270 at 4:43 AM on December 10, 2012

My dad died of cancer, which was diagnosed 5 weeks before he died. At the time of diagnosis he was told 'a few months', and then a few days later I was called back to the hospice because they thought it might actually only be a few days. After about four weeks he was no longer really conscious. We don't really know where it had spread to because they didn't bother doing full body scans - what's the point? I know he had several very large bowel masses that basically blocked his intestines and also other tumours elsewhere.

I asked the palliative care consultant what he would actually die of (because I like to know these things) and she said we don't really know how cancer kills and the best explanation is that either it blocks a life-sustaining function (like lung tumours leading to respiratory failure either directly or through an infection) or the body just shuts down due to overload.

My dad partly starved because his bowel was blocked, but even if he'd been fed using TPN I don't think he would have lasted much longer. He was in a lot of pain and very confused.

Take advantage of whatever palliative care/hospice facilities you have access to because they are wonderful. Spend time with your mum while she's still relatively well. My dad's focus definitely shifted inwards towards the end and while that was to be expected, I was so glad I was there for the earlier parts and I wish I had made more effort to see him more before his diagnosis when he was starting to feel unwell.
posted by kadia_a at 6:10 AM on December 10, 2012

My dad died of cancer two years ago and I asked an almost identical question. Many of the answers were very helpful for me.

In my father's case, he was never in any significant pain for the last few weeks of his life, which I credit to his excellent hospice nurses. I had a great, lucid telephone conversation with him on a Tuesday, and by Friday my family was telling me I needed to get there immediately. I arrived Saturday afternoon and he was semi-conscious enough to understand that I was there. My sister and I sat with him for that last day, along with a rotating cast of other family members, and he died early Sunday morning. I actually found a great deal of comfort being there at the end, because it was so utterly peaceful. He just drifted away, little by little, until he was gone.

I would also suggest taking that "6 months" guideline with a grain of salt. They told us my dad had 3-6 months and he barely lasted two. I've also known people who have lived much longer than what their doctors told them, but I wouldn't count on that. Talk to your mom, soon, about her will and power of attorney, her funeral, and plans for hospice treatment (or make sure that someone else in your family has discussed all these things with her). It will make the end much easier on everybody to have had all those details worked out in advance.
posted by something something at 6:25 AM on December 10, 2012

In my head I think of how AIDS normally kills through pneumonia etc - is it an immune system failure that will end up taking her, for lack of a better phrase?

They usually call it something death from complications due to cancer but pneumonia or pneumonia like symptoms are common in these situations. My mother was given about 6 weeks when treatment was no longer working and it was actually about 6 days (we didn't even get to move her to a hospice).

I would advise making funeral arrangements, they call it preplanning usually, ahead of time instead afterward as you will be rushed and not in the greatest state of mind to make decisions.

As for preparation in an emotional sense I can't really say since we all respond differently. For me, the finality of it makes it easier to accept. Everything that could be done has been done and now you're ready for the end which could happen sooner or later, you just don't know. You don't have the power to change it so you think of it a lot and that helps you prepare. In our case she was cognitive but suffering and then quite suddenly became barely coherent so spending time now is best. You can't assume you have any time left.
posted by juiceCake at 6:26 AM on December 10, 2012

One thing to be aware of: well-meaning friends and relatives may come out of the woodwork, fresh from Googling up ideas for treatment and cures. They may not easily accept the idea that she only wants palliative care and that she and the immediate family have accepted the idea that nothing further can be done. Those less intimately involved in this may be looking for a "medical drama" as somebody put it on a recent question.

If you can, preempt all that with some language that the immediate family can use in emails and phone calls with that larger, less-informed circle. "This is what Mom has decided." "The doctors are convinced, Mom is convinced, and we agree, that any further treatment is going to be worse than letting nature take its course." Etc., and as you've written yourself in this question.
posted by beagle at 6:39 AM on December 10, 2012

My grandmother passed away due to ovarian cancer (and complications) several years ago. I don't remember the specifics of what happened physically. I do remember that she was very disoriented at times; she remembered who everybody was, but would forget that she couldn't walk anymore, for example. At first we tried to correct her when she was confused, but then we realized it was stressful to her, so we stopped correcting her, which was much easier on everyone.

I also wanted to tell you that when she went on hospice care, after being in the hospital in intensive treatment for a long time, it was 100% the right decision - we knew it immediately. She was really, really suffering when being treated, and was not getting better, and hospice allowed her to spend her last few months at peace, at home, spending lots of time with family and friends.

I would encourage you to take off as much time as you can to spend with her, especially while she is doing well - not just waiting until she is not doing as well. The memories I have of visiting her when she was on hospice are so, so precious to me. I'm so glad you'll get to spend time with her at Christmas.
posted by insectosaurus at 7:07 AM on December 10, 2012

So very sorry you're going through this. Nothing can really prepare you for it, and it never really goes as you might expect.

My mother died of lung cancer about 4 years ago. The actual death experience was very similar to what Houstonian described above. She was also highly medicated—things like oxycodone and morphine, so she was quite confused and not very lucid the last day or so of her life.
posted by teriyaki_tornado at 7:09 AM on December 10, 2012

I see a lot of patients with end stage cancer coming through the emergency department.

It's true that the course is unpredictable in terms of how much time exactly and also what happens, but there can be some predictable parts.

Cancer puts you at risk for a number of other serious complications, like blood clots, for example - a major blood clot to the lung could lead to a sudden death. Cancer does put you at risk for infection, but typically you're not getting actual 'opportunistic infections' that affect severely immunocompromised people unless you're getting chemotherapy that's wiping out the white blood cells/immune response.

There are some things that are cancer specific, like getting lungs filling with fluid if you have lung cancer, or getting blockages of the intestinal tract if you have colon cancer. But in the end cancer is cancer, it keeps accumulating different ways to spread and grow and can be pretty much all over your body no matter where it originally started from. Common things that happen to many cancer patients, assuming they don't get hit by some secondary issue as noted above:
1. Pain: from having tumors growing in places they don't belong and pressing on other things, or in places where space is limited (like in the brain), or from lesions in the bones (spine, ribs, etc). Metastatic cancer to bones can eat away at parts of the bone until they break, too. Cancer patients typically get increasing doses of narcotic pain medications to help control the pain. Near death, this can cause confusion, drowsiness, and decreased respiratory rate, but it is typically used despite these effects to keep the pain away.
2. Decreased appetite. There's a reason why you always hear about cancer patients smoking marijuana, and it's not just for pain relief. It's also to try to improve their appetite. Many cancer patients have trouble with eating and drinking enough as their disease progresses. They not infrequently get admitted to the hospital for dehydration.
3. Multi-organ dysfunction. Patients with cancer all through their bodies can suffer from multi-organ failure at the end of their lives - kidney failure, worsening liver function, respiratory distress due to fluid/tumors in lungs, etc. Kidney/liver failure or hypoxia from lung issues can also cause confusion (the kidney and liver issues because they allow toxins to accumulate in the body). These things usually do not happen in a noticeable way until the patient is near death.

If you'd like to learn more, try the recent bestseller "The Emperor of All Maladies" which talks about some of the medical parts and the history of cancer as a disease.

Add me to the list of people who are thinking of you and sorry that you are going through this. Here is an article by Atul Gawande which I think is excellent and I have recommended here a number of times before. It is about how medicine fails patients (sometimes, in some ways) at the end of life. I say that to preface my next point - you mention at the end of your post "she may be admitted to hospital and we will have to sit around and wait".... one does not have to die in the hospital unless one chooses to do so, nor does one need to spend one's time dying there. I nth the points made about hospice care and how important it is to learn about that. If your mother would rather spend her time at home, there are ways to make that happen, and you and the rest of the family can help...
posted by treehorn+bunny at 7:41 AM on December 10, 2012 [3 favorites]

I'm so sorry that this is happening to your mom, to you. Do you know who her support network is? Talk to her now about who should be informed of her illness. Reach out to them. Accept all meals offered. Just throw them in the freezer or, if it's full already, enlist a family member or friend to freeze things for you. When my Dad was dying of cancer, so much food was brought over. It was overwhelming but it really seemed impossible to cook. There was so much to do and things were so confusing.

Enjoy the time over Christmas. Bring something to keep your hands busy. Talk to your mom, record her stories if you can.

My brothers were the caretakers of my father for the majority of his illness, plus my mother, of course. It really does take a toll. Cancer sucks. Anyone who is caring for your mom should get huge grains of salt for weird behavior. My mom and I had the most insane, crazy fights while my Dad was dying. I know now that she was in a fog of grief and anxiety. We all were to a lesser extent but it was hard not to be overly raw all the time.

My Dad died, at home, about 24 hours after he started hospice care. I was with him when he went having flown in about two hours before. I don't think he knew I was there. He went pretty peacefully, all things considered but it was hard. Obviously.

Just go easy on yourself. Accept help. If people want to talk to you too much, it's okay to say, "Thanks for your concern, I'm exhausted and need to rest/do something around the house/don't feel like talking about it." They'll understand.
posted by amanda at 7:44 AM on December 10, 2012

I am so sorry to hear you're going through this. It's massively hard, I wish there were some way around it, but there isn't.

Yeah, prepare for difficulty in communicating, not immediately, but eventually. That was the hardest thing, I think. My dad couldn't communicate his needs very well, his voice was gone and his breathing was so labored that I, at least, couldn't understand 80% of what he said. One brother (a cancer survivor himself) was able to understand him--or possibly just to intuit his needs better than the rest of him-- and the rest of us were just very helpless and frustrated.

One thing we noticed was, chemo and radiation had killed his sense of taste? So he hadn't enjoyed food for most of his (6-8 months of) illness. But once we switched to palliative care, he wanted fried chicken, hot dogs, french fries, milkshakes. Which, ironically, made him look and feel a lot healthier than he'd been when wasting away on chemo. It was great, but it did give some people false hope.
posted by like_a_friend at 7:45 AM on December 10, 2012

I'm really sorry you're going through this. My experiences are somewhat similar in that I had a difficult relationship with both of my parents and my mom was dx'ed with stage 4 breast cancer when I was 22, and I found out my dad had stage 4 prostate cancer when I was 27. I don't know if this is universal, but one of the things that did happen was that a lot of the old issues and stuff started seeming a lot less important, and I have these really tender, treasured memories of our last years/months together.

-- I typed a bunch of stuff here about what happened but deleted it. I guess the bottom line is that dying isn't like it's portrayed on T.V. and in the movies. In my experience with my parents, at the very end it wasn't a peaceful process. I'm not sure how to get into the specifics without being crass, but as an example, my mom's hands got really puffed up and a bluish mottled color because of the fluid in her body. The actual dying part was really disconcerting to me. Because of the nature of pain medications that are typically given, she drifted in and out of consciousness. Mostly out, but there were these moments/hours of clarity where she'd sit in a chair and we'd have a meaningful conversation. A lot of times in her hospital bed she was mumbling these little snatches of dreamy half-conversation with people from her past who weren't present.

Anyway, it sounds like your mom isn't really there yet, so I think one of the important things to know now is that your time isn't over yet. Even really late in the course of my parents' illnesses we'd have these really special moments and conversations. You shouldn't feel pressured to be a certain way or say certain things, or to even to "make the most of your time" because it sounds like your relationship was strained. I guess I would just say follow your intuition and your personal boundaries and let that guide you with respect to what your role is. It's something you can't truly prepare for.

If you really want to get into the nitty gritties of what happens, there is this book: How We Die
posted by mermily at 8:21 AM on December 10, 2012 [2 favorites]

I am so sorry you are going through this. My mom died last year of colorectal cancer that had spread to her bones. I was 24 as well.

My mom battled cancer on and off for 10 years, but at the end, I'd say within the last four months or so, her physical decline was very rapid. She lost a lot of weight and tended to sleep all day and had no interest in eating. She came to a point where she was done with doctors and treatment, so she was put in palliative care (where they try and keep you as comfortable as possible). At this point, under the influence of heavy painkillers round the clock, she stopped being the woman I knew and instead was a sickly, feeble shell of a human.

If your mom reaches this point, it may be very unsettling to watch. When my mom wasn't in a coma-like sleep, she was moaning in pain. The painkillers make you see and hear things, and my mom would say things like, "Get that monkey out of my room," or she'd point to nothing in particular. She also referenced my grandparents, who are both deceased, which is a very common occurrence in people who are dying.

At the very, very end, there is no talking, eating or drinking. Every ounce of her body fat was gone and her skin had an almost yellow tint to it. She stopped opening her eyes. The body sort of shuts down, one system at a time. We were advised that hearing is the last thing to go, so we took turns sitting next to her bed and telling her stuff. I told her that she had been a good mother, that I would be okay, and that it was for her to go. I also read Bible verses to her and ran my fingers gently through her hair. It was hard to tell if she knew I was there or not, but I like to think she did. It was the darkest hour of my life, going through that. I had physical reactions to the grief and stress of everything; I was more exhausted than I have ever been in my life. Other members in your family may deal with the grief differently; expect there to be some tension surrounding that.

You will probably feel conflicted--wanting it to be over, but not wanting her life and your time together to end. You might feel anger about why this is happening to you, especially at 24, when so many others have their moms. The five stages of grief--bullshit. There are no stages. There is everything all at once. Sometimes you feel everything and sometimes you feel nothing.

Spend as much time with her as possible. If she's still eating, feed her, or douse her lips with water. FWIW, I chose not to be present when my mom actually passed away. About a month later, I had a dream where she came to me and said, "I didn't want to go, but when you told me I could, I knew I had to." It is the most vivid dream I have ever had.

Please message me if you want more details, I really could go on all day. You WILL get through this. It WILL get better. I promise.
posted by thank you silence at 8:32 AM on December 10, 2012 [2 favorites]

On how to deal: my dad died almost 9 years ago. I was 29, and I still don't think I've dealt with it, fully. Your visits with a psychologist are already way better in terms of self-care than what I did for myself, so good on you. Taking care of yourself is important, and it's good that you're doing that - lots of people forget. I certainly did.
posted by NoRelationToLea at 10:55 AM on December 10, 2012 [1 favorite]

...it's going to hit me hard seeing her in whatever state she may be in.

You'll get past your shock. You'll see past her suffering and tend to her momentary needs. Have some confidence in your ability to put one foot in front of the other. Bend hospital rules when you feel the need.

I'm afraid to recommend this movie. WARNING: the film is in turns sweetly mundane, heart-rending, horrific and then, horrifically mundane. I just happened to catch it on public television when my dad was sick with cancer and I'm eternally grateful to it's subjects and creators for giving me a roadmap as I entered into frightening, unknown territory.

If I could change anything about how I handled my father's illness, I'd have taken more time off work and been less OCD about feeding my fish. In short, I wish I'd thought to ask my girlfriend and others for help.

From my limited (Canadian hospital) experience, when people are moved into palliative care, pain management becomes top priority and they are drugged into unconsciousness. Caregivers maintain (or increase?) the medication until death.
posted by bonobothegreat at 11:14 AM on December 10, 2012 [2 favorites]

I am so sorry that you and your mum and your family are going through this. Seconding everyone's good experiences with hospice programs; they can be so helpful.

Love and hope to you and to everyone posting in and reading this thread who has been through this difficult passage.
posted by Sidhedevil at 11:15 AM on December 10, 2012

I dropped my mom off at the airport in late September, 2009. She had come for the birth of our first child a few months earlier. She apologised for being so tired. We hugged.

Three weeks later I got a call while on a business trip. She had terminal bone cancer, was in the ICU, had a month to live.

Four days later while waiting to board the plane to Jo'burg, my dad called. She was dead.

With death, the second chances end. I found that more than anything, the fact that I didn't have another chance to leave earlier, to be with my mom one more time, to tell her I love her, that is what still sticks around years later, ready to pounce and reduce me to tears.

So my advice: don't fret on the process itself -- it's what it is, and you'll do fine. Focus on helping her live the life she has left.
posted by bitterpants at 4:08 PM on December 10, 2012 [1 favorite]

Thanks for all the replies everyone, they have all definitely helped me 'prepare' for what is to come.

Mum is very lucky with having a support system around her - her mother/my grandma has been the one who has taken her to and from treatment every day since her diagnosis and been there for her, and when it all started her brother took over her assets and the legal side of things, so he is now power of attorney and I trust all that side of things will be wrapped up neatly once the time comes so there is no stress on her and the family. My mother's family unit is quite small, and apart from my brother and I they all live close by each other so she's gotten through it well. She's been very honest and matter-of-fact about the situation and I think has dealt with it all extremely well, which has helped me.
posted by sunshine arakhan at 4:48 PM on December 10, 2012

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