How to prepare to lose my sister to cancer
February 26, 2021 10:42 PM   Subscribe

My sister (48) was diagnosed with glioblastoma three weeks ago and given 1-2 years.

She had emergency surgery, where 86% of the tumor was removed. Chemo and radiation will start in a week. After many months of terrible headaches, she came out of the surgery transformed into superwoman, became vegan and started intermittent fasting at the recommendation of her radiologist, and has also started working out every day. She has immense gratitude for still being alive and also seemingly immense energy (likely from the steroids and anti-seizure meds).

While I am doing everything to support her, I am also preparing mentally for her decline which we are told is inevitable with this disease.

I want to prepare myself so I can be strong for my sister and my two teenage children whom I’m raising alone. What advice do you have? Books? When and what professional help should I seek?
posted by Dragonness to Health & Fitness (19 answers total) 8 users marked this as a favorite
A book that helped me a TON when dealing with grief was It's OK That You're Not OK.

Also, and this is just from my personal experience, the anxiety and fear around knowing a loss is coming can make it harder to spend time with the person, because seeing them is now associated with this big, awful event. Do anything you can to push past that feeling, and spend as MUCH time with her as you can. If there are things you feel like you need to say to her before that chance is gone, do it now. Don't wait for the imaginary future date to get closer before you do. My therapist gave me this advice when I thought I had at least 3-4 months left with my mom, and I had planned to sit down with her and just have a huge heart-to-heart in a few weeks while we still could, and less than two weeks later she was in hospice. I would give anything to have just driven to my parents' the day my therapist said that and had the talk right then and there.
posted by augustimagination at 11:43 PM on February 26, 2021 [21 favorites]

I’m so sorry - what a stressful situation. In our experience with my husband’s father’s glioblastoma, he received quarterly scans that tracked any cancer growth recurrence. He seemed mostly fine post-surgery, with some minor cognitive changes and also less energy/greater nap needs, and mostly lived a normal life for several years after diagnosis. Because he felt “normal,” his quarterly scans became very stressful - they were anticipated/dreaded, and the days between scans & getting the results were tough. But otherwise, he was mostly fine.

The scans did inform us when the cancer returned, long before any cognitive changes. The cognitive changes got to be rather severe about four months before he passed. If his experience is typical (caveat: I’m not sure!), my takeaway is that your sister’s care team will likely help alert you before significant cognitive changes begin.

We found the resources available through UCLA medical center, including an annual/biannual glioblastoma forum (not sure if it’s still happening during Covid), to be extremely helpful, cutting-edge and comforting, even in the face of a “there is no cure” diagnosis.

As a matter of best practice for any adult, but certainly one with a serious medical diagnosis, your sister should take care to get her affairs in order (will/trust, advance healthcare directive, passwords written down, providing access to bank accounts to trusted pattern/family members, etc).

You’re doing great to be thinking ahead. Take care of yourself too! You’re still in shock right now. A month ago, before all this happened, you had no idea how much time you had left with your sister, but you probably assumed it was “old age.” You still don’t know the timeline, but you’re now more aware that it’s likely less than you hoped. That doesn’t mean she’ll be gone in a month, though - my FIL had three good, long healthy years before his recurrence - you DO have time left, thanks to the surgery. So take care of yourself too, and don’t burn out in the next few weeks as you recover from the shock of this news.
posted by samthemander at 11:48 PM on February 26, 2021 [9 favorites]

From my mom's GBM: don't count on a schedule. Say goodbye all the time, say hello every day. Brains don't always do what you were thinking they'd do.
posted by away for regrooving at 1:41 AM on February 27, 2021 [23 favorites]

Find someone or someones you can really dump out on, because you can't use your sister or your children. That might be close friends, but it might be a therapist or counsellor. To be strong for other people, means you need people less affected who can be strong for you.
posted by plonkee at 2:50 AM on February 27, 2021 [13 favorites]

I’m so sorry. I lost my husband to GBM last year, just about 20 months after diagnosis. With him, the cognitive decline wasn’t bad until the very end. He was basically normal for the first year, then after a terrifying bout of meningitis, a recurrence, and a second round of radiation for the recurrence, he had some aphasia and short-term memory problems. But even then he was able to do all his tasks of daily living up until he started hospice. Like, he could always make himself lunch, get dressed, crack a joke. He did get worse at anything involving multiple steps or planning, but there was never any question of him needing 24 hour memory care or anything like that.

So with the cognitive decline thing I think a lot of it depends on how your sister lives and how much help she has - with my husband most of that cognitive decline was no big deal because I was able to pick up the slack pretty easily (I was working from home due to COVID anyway, and he wasn’t working, and we didn’t have kids, and our neighborhood is very walkable so he didn’t have to drive). But if she lives alone or has major responsibilities, she may need more help at some point (eg meals in the freezer and someone to remind her to heat one up and turn off the oven afterwards) even if her decline is overall manageable.

Also cognitive decline can happen very suddenly - it’s not necessarily going to be subtle. Honestly I wouldn’t worry that much about the subtle stuff.

Do also talk with your sister now about final planning and wishes, both after-death funeral and estate planning stuff and “what symptoms are you OK with, what means ‘we’re stopping treatment now’”? If her neurooncology practice has a nurse or NP they can be really helpful with this (the Drs tend to be more treatment-focused). Like my husband could have had surgery for his big recurrence last year but it would pretty much definitely have left him unable to speak - that was never on the table for him. When he developed hemiplegia and was quickly losing the ability to walk, that’s when we switched to hospice care.

If you’re your sister’s primary support and likely to become her caretaker, think about how you will handle that with your other obligations (work, kids). It can be a lot of work. Also hopefully this will soon no longer be an issue for your sister but keep an eye on what the different COVID safety rules are at different toes of facilities. Where I am the visiting rules have been completely different for hospitals, rehab facilities, non-hospice nursing homes and hospices/people in end of life care at nursing homes. My husband was able to receive all his care, even emergency care, at one hospital (where his oncology team was) or at our home, which was great.

Good luck to you both! I often thought of GBM as the “land of no good news.” To a large extent the disease is just going to progress how it’s going to progress. Seconding those who are saying to spend time with her now, have the heart to heart you’ve been meaning to have now (if applicable), and encourage her to reach out to anyone she’s been thinking about reaching out to.
posted by mskyle at 4:25 AM on February 27, 2021 [10 favorites]

Purposely and consciously appreciate every moment with her. Keep your awareness of her mortality front and center and use it to make each of those moments sweet and precious.
posted by spindrifter at 4:59 AM on February 27, 2021 [6 favorites]

My brother died of testicular cancer at 31, and I have multiple myeloma (bone marrow cancer), so I have some sense of this from both sides.

The kind of cancer I have is considered incurable (note I don't say that it is incurable - I learned that from Mike Nesmith, of all people). When I was first diagnosed, my therapist said, "You don't know what's going to happen," which is very true. I'm on a myeloma support board that has several people who were diagnosed more than twenty years ago - they would have been told they had two years to live. (I know this because my mother was diagnosed with it then, though unfortunately, she only lived eleven months.) A MeFite told me to think of the first people for whom AIDS became a manageable disease instead of an immediate death sentence - this was in my lifetime. Also, I think every cancer patient should read the Stephen Jay Gould essay The Median Isn't the Message, which is very helpful for understanding the outlook may be less bleak than it sounds. And as my doctor roommate pointed out to me, all survival statistics are by definition out of date. I'm just saying that while it's possible that the doctors are right about your sister's prognosis, they may also be wrong. If she has good health insurance, this is the best time in the history of the world to have a glioblastoma.

That said, the big mistake I made with my brother's cancer was being so focused on the fact that he might die that I didn't really appreciate the time that we did have. I don't like the idea of the big Hollywood heart-to-heart talk, and I would be super uncomfortable if someone came to me with that intention, since the subtext is "you're dying" and I don't want to think about that on someone else's schedule (so think - is this for your sister or for you?). But I think there's room for lots of little talks, lots of little moments of appreciation or love or saying something you want her to know. I would suggest therapy for both you and your sister - you both need someone to talk to that you don't feel you have to take care of.

On the practical side, the online forum I use is on Smart Patients, which also has a glioblastoma forum. Lots of people who join are relatives or caregivers rather than patients. It's really helped me with some practical information. I had bad digestive issues from the chemo, and that's where I found out that other people's doctors were prescribing the drug that eventually helped (my doctor knew about it when I brought it up, but had never mentioned it to me - for that and other reasons, I eventually fired her and found an oncologist who is great). It's also a good place to find out about other sources for people with glioblastoma. Your sister might want to find a clinical trial, and Smart Patients can probably help with that (that's how I found out there's a whole website for people to find clinical trials for multiple myeloma). Smart Patients is also a good place for moral support. It can be a pretty annoying that so many people don't bother to search the site before posting a question that's been answered 500 times, but in general, it can be very helpful. (Note: since I'm not on the glioblastoma forum, it's possible that it's a big mess and I don't know it.)

If she is in the US, your sister should be seeing a specialist in glioblastoma, not a general oncologist. There are studies showing that people with myeloma who see specialists actually live longer. She should be going to an NIH Cancer Center. If she does not live near a center, she can go to a doctor at one for a treatment plan and have her local oncologist administer it. People do this all the time. One of the good things about COVID is that these centers all have online appointments now. I got a second opinion from a specialist in New York without leaving my house.

Good luck. This is hard, but it's manageable.
posted by FencingGal at 5:03 AM on February 27, 2021 [17 favorites]

I just arrived where you will be in 1-2 years. Echoing what many have already said:

Spend time. Address any unfinished business while you can. Now.

If I could do it over I would have done several recorded interviews, as soon as possible--whether audio or video
And made music playlists and photo albums together.
And made sure whoever will be making decisions in the final days knows exactly what your sisters wishes are--to the letter.

Instead of reading books to prepare (which I did a lot of), I wish I'd learned more about are the practical skills that people like hospice nurses know how to deploy in order to alleivate physical suffering.

It's true what everyone says: your own self care is not optional. But it's a deceptively easy thing to think you can skip.

Whatever you need to do to feel strong enough each day for you, your kids, and your sister, that's what you do that day. And if you can't do that thing, reach out and ask for help. People will be wanting to help.

And if it's a different thing you need each day, then do a different thing each day.

Rely on any death and dying resources in your area that resonate with you, including social workers. Your sister's medical team will have recommendations--try them out. There are death doulas, support groups, and tons of resources that no one really thinks of until the time comes, but they ARE there, and certainly online if not locally.

Take photos. Save voicemails. Expect that schedules will not work as expected.
Share laughter, tears, and hand squeezes when it gets tough :)

And don't worry, this is not a graded exercise. You heart will magically bust open in a way that will make it possible for you to do everything exactly right at the hardest moments imaginable.
Sending a hug.
posted by abuckamoon at 5:39 AM on February 27, 2021 [10 favorites]

I came in to say what Plonkee said. Do NOT try to process your grief at this loss with your sister or your kids. I walked through a cancer diagnosis with a friend and was shocked to see how many people wanted to talk to my friend about THEIR death. Find a counselor, find another friend to have coffee with weekly to process your pain, but don't bring it to your sister. In fact, one of the best things I did for my friend was talk about work drama (we worked together before her illness.). She really enjoyed engaging in everyday things around her rather than everything being about the disease. This is a gift you can give your sister.
posted by eleslie at 6:01 AM on February 27, 2021 [11 favorites]

Correction to my post: I meant that if your sister is in the US, she should be going to an NIH cancer center. She should see a specialist regardless of where you live.
posted by FencingGal at 6:33 AM on February 27, 2021 [2 favorites]

My best friend was in full-time cancer treatment for over 5 years, and then died. My biggest takeaways:

-- Be ready, every day, to meet her where she is. Some days she will be raring to go, full of energy, fully living life. Some days will be the opposite. There will be whiplashes back and forth.

-- Same for her emotions. Always meet her where she is. Sometimes that will mean she wants to ignore everything and just live life. Other days she may want to wallow in misery and work through that. And everything in between.

-- You'll start to suss out if that "complain out, comfort in" thing truly counts for the two of you. For my bestie -- we were truly as close as two people can be without being married or genetically related -- she adamantly did not want to be left out of my complaints, because she wanted our relationship to stay as it always had. So yes, she sure as hell did want to hear about how pissed I was at a colleague or how my dishwasher exploded, etc.

-- Be there. And commit to being there always. You'll be shocked at how many friends and family will prove themselves incapable of this. Very close people will drop off the face of the planet over the course of this process. Don't be one of them.

-- The corollary of "be there" is that when the end comes, and in years going forward without her, you will be able to comfort yourself with the knowledge that you spent as much time with her as you could. It is a comfort, I assure you.
posted by BlahLaLa at 8:15 AM on February 27, 2021 [7 favorites]

I'm in a support group (currently remote) for people whose loved ones have cancer, and I can't recommend it enough. Even though cancer is incredibly common, it can feel isolating to care for or about someone who has it, and it can be really helpful to regularly talk with others who are dealing with something similar. I found my group via my therapist, but you might also be able to find something in your area by contacting your sister's healthcare provider, your own primary care doc, or with good old Google. I had a lot of hesitancies about joining this group, so I'd be happy to talk more about my experiences with getting started via MeMail if you would find that helpful.
posted by juliapangolin at 8:25 AM on February 27, 2021 [1 favorite]

So sorry to hear this. To the extent possible, be a sister to your sister rather than a caretaker. If there are necessary burdensome caretaking tasks that can be outsourced (that your family can afford to do) as your sister becomes more ill, do that. A bunch of caretaking can be outsourced but being her sister is not something anyone else can do.

The wife of a friend who died of cancer became increasingly bitter and resentful over the course of my friend's illness because of all the demands on her as a caretaker. But she refused to bring in additional help until the last week of my friend's life. That robbed both of them of the pleasure they used to take in each other's company as spouses. Other folks have had similar experiences. I was grateful that as my dad was dying, I could run after nurses and make requests and also help him go to the bathroom from time to time but I was not his primary caretaker. I was his daughter and could act accordingly.
posted by Bella Donna at 8:31 AM on February 27, 2021 [3 favorites]

So sorry about your sister's diagnosis. My close friend's husband died of glioblastoma just over a year ago, almost exactly a year after he was diagnosed.

Some observations:
- I became the friend who my friend wanted to be 'normal' with. We mostly didn't talk about her husband's diagnosis, treatment, condition, etc. EVERYONE wanted to talk to her about that. She really needed someone to be her friend who wasn't trying to make the cancer the only topic of conversation, so we talked about music, work, travel, and almost anything else. Your sister or you may need people to be her normal self with, either you or other close friends.
- her husband had some personality changes related to the cancer that in retrospect started showing up 6-9 months before his diagnosis. Paranoia, irritability, anger, etc, that got worse through his decline. This was really, really difficult for my friend and meant that their marriage was functionally over before he passed. Echoing those saying to seize the moment vs waiting to have whatever conversations you might want to have.
- if insurance or finances allow, definitely get as much help as possible with the practicalities.
- surgery wasn't an option, but there were some clinical trials that my friend was getting her husband enrolled in before he deteriorated too much to travel.
- see if you can get someone less close to the situation to be the point of contact for updating your sisters condition and organizing meal trains, etc.
Happy to talk more if it would be helpful.
posted by foodmapper at 9:46 AM on February 27, 2021 [4 favorites]

I don't know how close your kids are to her, so your situation may be different, but I was also a teenager when my grandmother died from this. I struggled with the well-meaning but sometimes crushing guilt of feeling like I was supposed to squeeze every drop of meaningful time with her, when obviously... kids/teens process this differently from adults and it may be too overwhelming for them, and things that seem trivial to an adult (sports, friends, etc.) are still really important to a teenager to balance and dump out. In my case, my family wanted to drive up and stay over every weekend, which was really overwhelming, but I didn't feel like I could say so. So I might suggest being open with your kids that it's OK to need a break and it's OK to make some time for "normal" things (and for you too, of course.)

I agree with others that it's a hard prognosis where things may seem great for a long time and then suddenly they are not, or it swings back and forth. If you are in a position to have these discussions, it would be good to start planning soon with your family what will happen if and when it becomes unsafe to drive, or use the stove, or go up and down stairs alone. In our experience it wasn't an obvious "no, totally impossible" as much as noticing gradual problems with forgetfulness and cognition.
posted by nakedmolerats at 2:47 PM on February 27, 2021 [2 favorites]

What terrible news, I’m so sorry. In addition to some excellent suggestions above, I would also recommend reading Atul Gawande’s book “Being Mortal.” It’s about end of life care in the US and his family’s experiences dealing with a cancer death (through his perspective as a surgeon-oncologist). He lists questions that are helpful for families to think about when faced with a terminal diagnosis, which may be helpful for your family as well. Sending good thoughts to you.
posted by stillmoving at 2:57 PM on February 27, 2021 [3 favorites]

My husband was diagnosed last summer with stage four cancer, prognosis poor, life expectancy limited, and after the first couple of months of turmoil and mad grief, it has become surprisingly almost normal. He’s responding well to the chemotherapy though he’s got a bit of chemo brain and peripheral neuropathy, and he’s often sad, but having seen my mother through ten years of Parkinson’s I learned that (a) the best thing I can do for my loved ones is make it okay for them to be who they are and feel the way they feel (b) you can’t process grief preemptively, you’re going to feel it one way or the other, and (c) it’s also important to take care of yourself. So I am making time in my life for the things I’ve been putting off while I took care of other people.
posted by Peach at 3:24 PM on February 27, 2021 [4 favorites]

I'll say a little about my experience with it, and what I thought was important that I tried to keep in mind. I don't know much about books or professional help for this, but I think reading other peoples' experiences was useful, and you might benefit from understanding the wide variety of ways that GBM can manifest.

I had a friend die about 5 years ago. He went through two rounds. His symptoms at first were physical, sudden radical paralysis on one side, then surgery and chemo. He did rehab, and recovered for about 12 months, enough that he started driving again, and was able to shop, prepare food, shower, etc. I visited him a few times during this period (like, 4 times over the year), and while he was physically compromised and sometimes depressed, we were able to hang out like we always had, enjoy going outside, for drives, watch movies, etc.

The second round came on pretty quickly. One of his followup imaging sessions showed the tumors had returned. He had surgery again, but afterwards when he and his partner were trying to figure out what to do, experimental treatments they might try, his doctor finally gave them the advice to stop treatment, focus on the time they had left, keeping him comfortable and thinking about eventual hospice. I visited him more frequently, four or five times over 5 months.

The second round was very different. I visited immediately after his second surgery, and while his physical impairment had come back, it was obvious that there were cognitive effects. At first it was his not being able to process things clearly. He would try to use a credit card to buy something, but couldn't tell the difference between $5 and $500. And then he started having some tics, like repeating himself, obsessively cleaning his glasses or mobile screen, etc. He started to lose his train of thought frequently, and sometimes just stop talking and look off in the distance.

It eventually became too difficult for his partner to take care of him at home, and so they found a residential care facility. At first he could get out of bed, and sit in a wheelchair, and we could sit on the porch and talk a bit. His periods of silence increased, but could indicate that he wanted to go back to bed, or for me to leave, etc, if I'd ask him a question he could nod slightly.

We'd sometimes watch TV, and he'd just play with the remote, trying to buy movies, change channels, restart programs every 5 minutes. Sometimes he'd become more lucid, and be able to talk about what was going on, realizing that something was wrong, and others he'd just stop and go to sleep. I think those moments of lucidity were the most heartbreaking for me.

In the last month, he was in bed the whole time, would talk just a few words, but mostly just look at you, look at the ceiling, or watch whatever we put on TV. Eventually he stopped talking entirely, but could clearly recognize me, his partner, or their daughter.

The very last time I visited, about 3 days before he died, he didn't open his eyes for more than a few minutes at a time. Over the few days I was there, he would nod, or hold my hand, but that was about it. The very last day I saw him, his eyes were closed the whole time, and didn't speak. But we had an exchange (which I'm not willing to relate here) that indicated even then he knew I was there, talking with him and saying goodbye.

Watching anyone decline is difficult. With some illnesses, you can see the effects pretty clearly, and in his case, seeing his mobility change was obviously attributable to the growth of the tumor. But the cognitive decline was much harder to process. He always cleaned his glasses a lot. Was he doing it more now? Was I mis-remembering how much he did it? Eventually, no, wiping them every 5 minutes is abnormal for him. When he stopped talking, was he gathering his thoughts, ready to respond or ask a new question? Eventually, no, the thread has been lost, the tumors are larger and preventing him from being able to focus and respond.

While his partner would probably disagree with me, I think we were lucky, in a sense, that he never got nasty or mean, which is something that can happen. But I did, once, witness him snap at his 10 year old, when she was climbing on his bed and acting like a 10 year old. It didn't last long, but it was out of the blue, and out of character. Both I and his partner talked to her at length about how he wasn't really angry at her, and how it was the illness. But how much she could process that, understand it and internalize it is not clear. I know that there were a number of times that his partner and I would talk about things we witnessed, and I found myself reminding her over and over that his behaviors were a direct result of the growth of the cancer, and not because he was giving up, angry, etc, etc. And certainly not because his love for his family had changed.

That was the hardest part, processing all the cognitive things that were changing, and always always always trying to remember that there was a physical thing in his head, pressing on his neurons, fucking with the way everything worked.

It's not possible to predict the effects of GBM, and there are a few different examples from people in this thread. Some people recover, and live 10 years. Some people go quickly. Some have severe cognitive impairment.

For me, I wish there had been a way to better prepare his daughter for the potential changes, and give her as much time with him while he was lucid, and try to minimize the effects of seeing a parent with altered cognitive functioning. And if it does happen that if the kids or you are exposed to mood swings, outbursts, otherwise uncharacteristic behavior, please process that as soon as possible to recognize it for what it is. That might be a good thing to work out with a therapist or crisis counselor.

I'm deeply sorry for what you are going through, and for everyone else who is reading this thread that has lost a loved one. I hope your journey on this path is gentle, and you and the children are able to navigate everything to come with as much love and care as you can.
posted by Gorgik at 11:13 PM on March 2, 2021 [2 favorites]

Response by poster: I want to thank every one of you for your words of support and kindness. We are still at the very beginning of the journey. I live on the opposite end of the country so I am not there physically but we speak all the time on the phone and I try to help with research. She is a very strong and independent person, adamant that she doesn’t need help. As things progress we will adapt.
posted by Dragonness at 1:08 PM on March 3, 2021 [1 favorite]

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