How to best support sibling with terminal condition?
June 11, 2019 2:58 PM   Subscribe

My sister has non-smoking lung cancer. She is on a special drug right now which is working great and is her usual self, but her prognosis is 2-5 years. It is really easy to forget about it, right now, and act like nothing is wrong. When I find myself doing this, I feel like I'm being fake and doing her wrong...but then I think this is what she wants and I should follow her lead. Have any of you been in a situation like this?
posted by cgs to Human Relations (14 answers total) 6 users marked this as a favorite
Not family but I went through this with a friend a few years ago, she had 3-4 years of good health while simultaneously suffering from terminal cancer. I think most all of us just followed her lead, and she pretty much just soldiered on determined to have fun, towards the end we also setup a visitation schedule so that each of us close to her got a last evening or two of quality time before the end.

I say follow her lead, you may even end up having a conversation with her about following her lead or not.

Take care.
posted by Cosine at 3:06 PM on June 11

I'm so sorry. Cancer is just the worst. I have had two parents die of cancer (one in the last month) and it's just rough to know what to do. Nothing feels normal. Normal feels weird. But truly, there is no way to live like today is the only day you've got. No one has the stamina for that. And if we all did that, we'd be broke tomorrow and our loved ones would be right sick of us. It's okay to live your life. You have to. But also, with your sister, her time may be fleeting but none of us really knows. So, when you want to reach out, do. When you are sad or afraid, just connect. You kind of have to look death in the face and just...go on living.

My birth mother got a year and a half (almost) from when she was diagnosed. I could not drop everything and be with her. I was hopeful I'd have more time than I did. But, I tried to not leave things unsaid. Even though there was plenty unsaid and unasked. You have to be brave and not shirk but you can't mourn for 5 years so don't try.

Sending you good vibes and strength and hope.
posted by amanda at 3:08 PM on June 11 [3 favorites]

I am going through something similar right now. My sister was diagnosed with Stage 3 pancreatic cancer in January. It sucks. There's no easy answer to your questions - I have the same ones.

For me, I was super worried how to act/what to say at first. But, over time things have become "normal" as much as they can be. Meaning that I don't feel like I have to act like every day is her last. Right now she is seriously ill, but receiving treatment and doing as well as can be expected, so I pretty much follow her lead on conversations/how to act. I don't think she is ready to have the big serious end-of-life talks yet, so I haven't pushed that. I am going to visit her on Saturday and feel anxious about what that will be like, but I will let her set the tone.

The biggest thing you can do right now is just show up. Be there for her. Listen to her. I have also found the Ring Theory of Grief to be enormously helpful when navigating all the other family drama/bullshit that has come up since her diagnosis.

Hugs to you. It's not easy.
posted by GoldenEel at 3:23 PM on June 11 [4 favorites]

I just lived through 5.5 years of my best friend having stage IV ovarian cancer, and then she died. So my opinion is: follow her lead. Full stop. If she is "her usual self" right now then grant her the gift of living without having to think about cancer 24/7. There will come a time when it's all cancer, all the time, but live the gift of these days or months or even years while you have them.

As for the ring theory -- yes, it's true(ish) but my bestie loved when I complained to her about all the normal things I would have complained to her if she didn't have cancer. Like when my dishwasher exploded or I had nothing to wear to a party or whatever. She wanted to be engaged as normally as possible, and part of that was complaining to each other about life's little annoyances that had nothing to do with illness.
posted by BlahLaLa at 4:06 PM on June 11 [4 favorites]

I have/had stage 4 endometrial cancer. I initially got "we can make you more comfortable" messaging. That was 4.5 years ago, and I've been clear since surgery/chemo. These things happen, so don't focus too much on the prognosis. I wouldn't let them give me one, because I didn't want to know.

Anyway, people who treated me normally, not like I was super fragile, and then occasionally inquired how I was doing with it all were my favorites. Most people are good at one or the other. Be that safe middle ground for her - space to talk, but mostly normal behavior.
posted by donnagirl at 4:38 PM on June 11 [4 favorites]

I agree with following her lead for the reasons mentioned, but as a cancer patient, I have an additional suggestion.

When I was first diagnosed, I got lots of flowers and cards, which I very much appreciated. But now I’m living what outwardly looks like a “normal” life while watching my bad numbers slowly go up and dealing with the anxiety of that. I am still hoping to live a long time, but since my cancer is considered incurable, it’s something that’s always with me, and I think that’s hard for people to understand. Sometimes I just would love to get a little card or tiny gift indicating “I know this still sucks and I’m thinking of you.”

I’m not complaining. I know people will be there for me if I want to talk about it. But there’s still a loneliness to living with it. And I thought of this because I did something similar for someone I love who had a shitty year for non-health reasons and she said she really appreciated it.
posted by FencingGal at 4:53 PM on June 11 [10 favorites]

I suspect this might be a combination of "live life like you're normal for as long as you can" and "be sure to do all those bucket list things while you're still in good enough condition to do them." For now, live life as you can while you still can and enjoy the "normal" for as long as it goes, but you might want to try having a conversation about things she might want to do pretty soon as well and make those arrangements.
posted by jenfullmoon at 6:14 PM on June 11

I went through this recently with my dad. He was diagnosed with liver cancer that eventually became terminal and he lived for about 10 months after that. I spent as much time with him as I could, while trying to also give myself space away from family because the stress was overwhelming.

I second the suggestions to follow your sibling’s lead. If she’s just going about her daily life as per usual, then do that. Try to spend time with her NOW while her symptoms are not that bad. It will only get worse, so all the time you can spend with her while she’s feeling ok are really valuable.

One of the hardest things for me was that my dad was pretty thoroughly in denial up until very near the end. It was really hard to be there helping take care of someone who could barely walk and was simultaneously insisting he “wasn’t that sick” and was making plans for the next summer that he very clearly was never going to see. I have no idea what the right way to deal with that situation is. I felt like anything I did was the wrong thing. Hopefully your sibling will be better able to face reality but I think denial is pretty common.

Sorry. It’s just going to fucking suck.
posted by a strong female character at 6:31 PM on June 11 [2 favorites]

I think as a sibling you can and should ask her to have at least one Difficult Conversation about end-of-life issues, with tons of warning and doing the entire thing on her terms, even if all that means is she tells you where the folder with all the important passwords are and tells you what Special Drawer you should take to a remote dumpster before your parents see the contents.

That conversation may end up being ongoing, though, and it may be that only during those meetings do you talk in harder terms about harder things, and the rest of the time you go on as normal.

But in that one meeting, you ask her what she wants from you - and from any other family, if she'd like you to be the messenger and enforcer of her desires there - and then you do that until she tells you otherwise.
posted by Lyn Never at 9:18 PM on June 11 [1 favorite]

Hi - I'm a medical oncologist/hematologist (with special interests in lung cancer care, palliation/end-of-life issues, and geriatrics). I consider myself lucky to be practicing in oncology at a time when we have so many options for treating lung cancer patients. When I started fellowship (all the way back in 2015!), we were still quoting survival of patients with metastatic lung cancer in the 9-12 month range. Now, with people like your sister who qualify for (I'm assuming) targeted therapies, and immunotherapies, there are people with stage IV lung cancer who are living for years! The optimist in me says, "YAY!" The other part of me knows that we are still a long way away, that prognosis depends on medication tolerance , and that patients can often progress without warning - so advanced care planning is really important.

I spend a lot of time talking about end-of-life issues with my patients. I start at the time of diagnosis and readdress as needed with changes in clinical status, because as much as possible, I want these conversations and decisions to happen when my patients are in the best possible shape to think and talk rationally about these decisions with their families.

I never want to wait so long to have these conversations when someone is in the hospital and facing these options when their sick-sick and in the hospital, when emotions (and tensions) run high. Ever. Sooo many situations where there are disagreements because nobody wanted to have the conversation about what to do when someone can't make their own decisions. It makes it hard on families, and (I think) places more stress on them when they have to make heart-wrenching decisions, and their grieving - to say nothing of the person who is in the hospital bed.

The last cancer center I worked for used the Five Wishes setup. I think this is a really helpful framework for getting the conversation started. You might also consider setting up something like this for yourself (and as an aside, you can also frame the conversation as "Hey, it's time for me to make some plans about what I would want if I couldn't make decisions for myself, etc." and transition into a conversation about her wishes).

Best wishes to your sister and you, and the rest of your family. Again, I feel so lucky to be practicing in a world where we can have some honest optimism about treatment of lung cancer.
posted by honeybee413 at 9:45 PM on June 11 [5 favorites]

I have multiple myeloma and my treatment and recovery has gone really well. The numbers are hard to pin down but I likely have anywhere from 4 to 10 years depending on who you ask. Its a really strange place to find yourself, as I’ve started to put miles behind my initial treatment and the drama of daily life is more about the living stuff then the death stuff now. Except you know, somewhere internally, there is still this war going on and at some point you’ll be drafted back into the cancer frontlines. It certainly made me more mindful about what I do with my time but you still have to participate in the grind at times and it can be hard to get enthusiasm for things like tax returns and parking tickets. I am also super particular about who I spend my time with and I don’t care much for small talk anymore. People will ask or inquire how I am doing and that also is tricky as it can be hard to gage who can handle hearing whatever you might be struggling with at the moment and who just wants to hear that you are “doing great” because if you guess wrong it can shut down the conversation almost immediately.

But more to your question - I did find a super helpful book called Recovering from Mortality: Essays for Cancer Limbo Time which isn’t in print but you can find on Amazon. Also another fantastic book by a cartoonist named Teva Harrison called In-Between Days.
posted by abigailKim at 10:02 PM on June 11 [3 favorites]

Also, I make a point of ignoring survival data for my cancer (also multiple myeloma) because it really isn't reliable. For one thing, it is by definition out of date. My cancer has a five- to ten-year survival prognosis, but the cancer support board I'm on is full of people who have lived twenty years and more (some of whom are now in financial straits because they spent all of their money on their bucket lists, thinking they were going to die). In addition, I did recently find out (because you can't completely avoid survival data) that the 20-year survival rate for my cancer is over 14%. That may not sound like much, but these are people who were diagnosed when the prognosis was two years and when there really was no good treatment for this particular cancer.
Again, follow your sister's lead, but don't take the survival prediction as written in stone. It can be way off.
posted by FencingGal at 6:26 AM on June 12 [1 favorite]

As I was answering yesterday I kept not quite remembering a thing I heard somewhere, and finally remembered this morning: Atul Gawande has a new book out, Being Mortal, that is about end of life/quality of life conversations that we don't have and don't know how to have. I think it might be useful for you to read and decide if you want to recommend it to your sister or other family members, and see if it helps you organize your own thoughts and feelings some.
posted by Lyn Never at 7:45 AM on June 12

Thank you, everyone! I appreciate all of the advice + concern. I am going to hunt down these books. I marked GoldenEel's response as "best answer" only because that framework really clicks for me, personally. I'm glad ask.meta still exists and provides thoughtful help like this.
posted by cgs at 11:53 AM on June 12

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