My friend is dying from a brain tumor.

I’m so sorry, OP. My stepbrother died from a glioblastoma at age 43 and left behind two little girls - it just doesn’t seem fair. She’s lucky to have you for a friend.

I'm sorry, OP. It is a cruel disease. I agree she is lucky to have your support.

I hope she doesn't suffer.

Ignorant slob here.

Is the quality of life completely devastating if the motor cortex is damaged so it’s not at all worth taking the risk?

What would that look like?

Alive but a quadriplegic?

Is it just not an option to be alive but debilitated?

Glioblastoma is insidious. I'm so sorry, OP.

I scrolled through the Joe and Mark thread earlier today - there is so much empathy and wisdom in it. Awhile back I posted a John Updike poem in it that I thought would be meaningful to them, but it seems horrifying to me now. When you're the one looking into the void, it's a whole different ball game.

When she was first diagnosed back in July, once or twice we talked about an end of life strategy but of course it seemed totally theoretical at the time. I think there is a strong possibility she may do it, especially if she starts to lose motor functions. She has some slight tremors of one hand, which is why they did another MRI.

Sending out love and positive energy to you OP. Going through something extremely similar and…it is devastating and life-altering even if there is remission.

There is a Grand Canyon between the before dx and after, and it is rough fucking terrain. Not for the faint of heart. Strength to you and yours

I would also like to take this opportunity to post this article about the ring theory of grief. It is good for everyone to keep in mind, refer back to frequently and share as much as possible.

I can't bring myself to do much online lookup, but from what little I did today it looks like fine motor skills may go first, sometimes just on one side. Of course, as the tumor grows, anything might happen. I couldn't bear to read much more.

You might find this thread helpful, OP.

I have been keeping up with that thread, as well as the much longer Joe and Mark thread, and as I said, there is a great deal of empathy and wisdom in both of them. Except now it's personal - in a big way.

I have been on DL forever, but am not currently a paid member, so can only post outside of primetime, so I'll probably be in and out. Appreciate the kind replies above.

Life is RANDOM and NOT FAIR, kids - don't ever let anyone tell you otherwise.

OP, stupid question, but has she gotten a second opinion on surgery? Specialists in other states that would look at her case- the test results, not in person?

I have a friend from high school and he's been living with his diagnosis for over 10 years. So there is hope!

Someone I loved had something similar. Collapsed in the shower and died two weeks later on Christmas Day. Finally he was free of all the bull crap of life but went too soon at 45. Here is the rub... he worked out every day and ate the same dinner of skinless chicken breast, a sweet potato and broccoli every night !

OP, I am the OP of the Diagnose Me thread and I wanted to offer you my sympathies and maybe some advice or help for yourself (as I don't know what your friend may be looking for in terms of support for herself).

When I got my diagnosis, I found a cancer care support group which is local to my location. Wherever you are, there must be a similar type of service, I'm sure. And the reason I bring it up is it isn't only for those who are afflicted with cancer, but also for their caregivers, family members and friends who are going through loss or figuring out how to cope or help. There very well may be a support group or some kind of help or guidance for you to figure out how better to cope with what you yourself are going through, as well as how to help your friend. I've joined two support groups so far, and have also checked out several workshops online and they have been most helpful. I am hoping you both get through this as best as you possibly can. If I can offer any other help, please let me know. We are all here for each other.

Was she double boosted and then infected with covid?

r10, the OP already said she was reading that thread.

I feel for you, OP. Hang in there, stay positive for her & make good memories together…you will cherish them. Despite the awfulness.

Thank you so much, R15 - that means a great deal and is a very good suggestion. Her care has been very good - we live in a city with two large university affiliated hospital systems - she's going to the one affiliated with my nursing school, which was excellent, so she's OK there. Today's meeting was with the oncologist and the radiation oncologist, and they really laid it out pretty honestly. They told her they could see the "cavern" where the previous surgery had removed the tumor mass, but that it is now growing underneath that site and is dangerously close to the motor cortex, which is why surgery is not an option. I'm hoping that the 4-6 month projection is on the high side.

This woman is active, fit, an animal lover; she went to pilates classes and to regular exercise classes at the local Y. She has over 20 years of sobriety through AA and has never relapsed once. She also quit smoking and has never looked back Her house is always spotless; she can sew anything, and at one time had a thriving business making children's clothes; she made a bunch of cute masks when covid first hit. She has a spectacular garden in her back yard. (Unlike, I should mention, like me, who has a house full of books and a piano that has not been dusted since maybe 2018).

Thank you VERY MUCH for reaching out; I recall from your thread that this is not your first go round and it seems to me that despite some hiccups with the health care system (!!) you have maintained a calm and rational approach. I truly wish you all the best.

OP, I am so so sorry about your friend. A family member lost her 2 year old to a glioblastoma, the last time I saw her before she was diagnosed she was running and laughing being chased by her older brother all over the house, the next week her parents took her to the doctor because she was suddenly clumsy. That quick.

You are so right- life is random and unfair. Enjoy everything you can while you can.

Please accept my condolences. Glioblastomas are inherently evil.

R15: I just scrolled through your thread. That was me at R84 and R87, telling you about my friend who had just gotten a clean MRI and had beat it - that was back in September.

*sigh*****

Are there any clinical trials she could perhaps enroll in? There is so much they're trying against glioblastoma -- CAR T cells, immunotherapy, and on and on. Unfortunately, it is the nature of research that most things don't work, but almost all successful treatments these days began with a clinical trial.

Oh no, I'm so sorry. Your friend sounds like a lovely person, and you do, as well. It's so insidious how things can turn on a dime. I cannot tell you how many times I've sat here in the past two months and thought- wow, in July I felt fine. I didn't think I'd be dealing with cancer again. A year ago this time I was across the country on a really fulfilling job for two months, something of a dream, and I felt like I had finally emerged from the whole Covid fog.

I will say that in my brain cancer support group, I have met the most extraordinary people who have been battling this for much longer than I would have ever thought possible, so a particular diagnosis and prognosis is NOT a 100% absolute. Be realistic and get the things done that you've always wanted to with her and help her to do that for herself, but know that there is more possible than what we might imagine.

I am sorry about your friend. I had a friend die in June of the same thing. Last year she lost the ability to taste and smell and thought it was covid. She never got diagnosed and thought she had long covid because she wasn't getting better. Then she had all kinds of other symptoms and got to the point where she was having trouble walking and talking. She finally got a brain scan and they found the tumor. They tried to do a biopsy and she had a brain bleed and died 3 days later. It was about a year between her losing her smell and taste and her death. She was 68.

Wishing you and your friend a wonderful Thanksgiving, OP. Let us know what you did today!

So sorry, OP. My dad died of that. Take comfort that it will be a quick and painless illness. That’s what his doctor told me when he was diagnosed and he was right. I know you’ll help her through this final journey and she’s so lucky to have you.

I am so sorry for your friend and for you, OP. I wish I had something useful to say.

And another one....

She had a quiet day with her family; she has an adult son and daughter and 3 grandchildren. Her daughter Kathy has been a real champ throughout this whole ordeal so far. I did not want to intrude on their privacy today, so just sent her a brief text this morning. I attended my own large family to do, but my heart really wasn't in it. I usually watch the Macy's parade, but just didn't feel like it -

I promised myself to stop googling because what I am reading is fairly terrifying; then I keep reminding myself what every minute must be like for her. I feel very helpless, but we are going to take this one day at a time...

Thanks to all of you for the kind words, especially those of you with first hand experience with this. I hope you are right, R27....I really value the support I feel from here -

Sad to report that things are not going well - I spoke with her the day after Thanksgiving, and she told me she was having trouble getting up from a sitting position and felt like she was losing sensation in her left leg. My sister, God bless her, brought me a walker she had left over from her knee replacement surgery and I took it over to her that afternoon, along with a bag of assorted Christmas candies, mini Kit Kats, various Hershey kisses, etc. When I got there, I was a little surprised at her affect - I know she tires easily, but she just seemed...flat, like a light had gone out. She told me she had decided to sign over her car (a fairly late model Hyundai) to her son, and was worried that she would have to go to the DMV to do that.

Unfortunately, the following day, while attempting to get up off her couch, she slid down to the floor between the couch and her coffee table and was unable to get up. She was taken to the hospital and after some tests and scans was told there is a lot of edema (swelling) in her brain and would be given 3 days of IV steroids. She also strained her left ankle fairly badly and apparently is now getting some PT. They are talking about moving her to a rehab facility.

Things seem to be on a downhill slide; I am afraid she may never make it back home again, although I hope I am wrong. We have been communicating by FB PMs, although her responses are brief. The one consolation is that , other than the ankle, she does not appear to be in any significant pain - but it's like her whole personality is slowly slipping away -

wit

(there's a 2001? film version, but here's another production)

Such a disheartening story. I'm sorry for your friend. I know two people who died from this; a coworker and a first cousin. One lived 4 months the other almost 2 1/2 years.

Cancer is a cunt. I’m sorry, OP.

My 62 year old brother died of this - 4 months from diagnosis to death. I noticed something was up about 2 years before, he seemed flat, low and making odd connections. He was treated for depression at first. Later there were some frank personality changes, loss of inhibition being one. He was diagnosed after seizures and it was inoperable. It wasn’t painful for him physically, but the symptoms - loss of bodily functions and eventual paralysis - were distressing. He mercifully slipped into a coma and died a week later.

Sorry to hear that, OP.

My father had terminal cancer and, while he tried to remain upbeat, he did have a bit of a personality shift. As soon as he was diagnosed he stopped doing most things; even things he could have done. It was like he thought "what's the point now?"

All you can do is be there for her.

r30 need something to google, then try looking up end of life and hospice care from a spiritual (not necessarily religious) or new age psych perspective. It might help you with coming to terms with it while also giving you ways to connect if she continues to decline...

music, meditation, mindfullness are the standard - SoundsTrue has youtube channel that may apply - but you might also look up adaptive exercise/movement, too, many hospitals have limited mobility exercise videos, even a few no mobility for caretakers/friends to do with the person.

When I or my mother find ourselves as patients for something serious, we often drift to gallows humour.. .much to the chagrin of everyone else around us. . . but being too serious or too positive can be just as annoying when you're laid up as when you're not.

Glam'ing up the hospital/rehab stay has its benefits too, such as designer hospital gowns and just little things to make the room more tolerable. - digital picture frames (ideally, those that don't need wifi) can help out -- if they're having memory issues, then edit the pictures (before you add to the frame) and ID the people in them.

The DL deserves better (and worse) than the twat-smear of "X is dying! Feed my need" threads.

The kitten-licking lugs stagger out of the woodwork and slobber around with inauthentic "kindness."

Ugh.

What a thoroughly nasty thing to write, R38. You sound like a sad and pathetic individual.

I am not here to "feed my needs."

R38 needs to get glioblastoma up his ass.

“They got it all” doesn’t mean you’re cured. I’ve heard a zillion surgeons tell this to people and it pisses me off because many, if not most, think it means they’re cured.

“We got it all. We can’t see any more cancer in your brain/lung/throat.”

The question you should ask is, “What’s the likelihood it will grow back and how soon?”

You need to know, because these fuckers are giving you false hope. You need to make plans. I hate when I hear this “They got all the cancer. We were so happy! And then…it suddenly grew back and there’s no hope. I don’t know what happened.”

R41 That's why they follow-up with chemo and radiation because even if there is no visible tumors left to remove, microscopic remnants of the tumor often are there. The issue is whether the treatments will manage them or not.

Sure Jan.

Speaking as a nurse, I don't think most physicians are trying to peddle false hope - if you did ask that question that R41 posed, I don't think you'd get many guarantees. It's just that cancer is an insidious, evil disease process, and you never know who or where or when it will strike. I am surprised, in just a small thread like this, how many first hand instances of glioblastoma posters have described - one involving a 2 year old child.

And look at someone like Olivia Newton John - a nonsmoker, nondrinker first diagnosed in 1992. Despite access to top notch care, and all of the so called advances in breast cancer treatment, it came back THREE times, in 2013, again in 2017 as stage 4. It is a horrible, horrible disease, and the worst part is that it can be so random. Just like EVIL is.

They pretty much can give you a range of when a glioblastoma will grow back, R44. Median survival rate is 15 months.

Believe it or not one of the bets things you can do to lessen your chances of cancer, or the reoccurrence of cancer, is to avoid sugar. Cancer feeds on sugar, glucose, etc, and it basically starves without it.

Sorry to hear this, OP. Best wishes to you and your friend.

Source, R46?

R48 I've read many medical research articles on this subject, this is just a quick summary.

I don't know where you are, OP, but a very small number of cancer hospitals are doing amazing work in glioblastoma treatment. At this point, nothing is unreasonable to try.

City of Hope in Duarte, CA.

And avoid excessive gobbling of peanuts, eldergays.

Received an email yesterday saying she has had two radiation treatments, so I assume the steroids must have helped with the swelling and gave them an area to target. Have not heard anything further about moving her to a rehab facility yet. Hoping for some good news.

It's weird how having a seriously ill friend can really permeate all your thinking. I just had a mammogram this past Friday; I have always just thought of these as routine and have never been frightened. But this time I kept thinking things like "what if it was me?" - a thought I have had more than once since her illness struck her out of the blue...thankfully by the end of the day I had my results and everything is fine.

"In the midst of life we are in death" - we all live with this on some level. On this thread alone there's a 7 year old who got murdered by some delivery driver, for Christ's sake - not to mention school shootings, random celebrity deaths, crimes, etc etc etc. But as I've said before, when it hits close to home, it's a totally different thing. The overwhelming sense of relief I felt this time with my mammogram results was offset with that "what if it was me?" feeling....

I keep thinking about Michael's exit line in THE BOYS IN THE BAND when he says, "I don't understand any of it. I never have"

Trialjectory is one site that matches people with trials. I don't know anyone who has used it so I recommend it as a starting point for possible trials out there.

I'm so sorry about your friend, OP.

Clinicaltrials.gov will have everything FDA regulated and/or funded by the US government.

My sister has been living with glioblastoma for over two years—surgery, radiation, chemo, and a device called an Optune. No regrowth since surgery. Ironically, a second craniotomy last summer, because of a suspicious MRI, showed it was just scar tissue (which they removed), but which has left her with some degree of aphasia. But she’s alive and active.

My boyfriend died of this. He lived five years after his diagnosis. He was 32 when he died. Lance Armstrong's organization provided a lot of great support resources. I wouldn't believe it if you were to tell me that, but it does amazing work.

I always think of the great line from Paul McCartney--one of his later songs: "Life as it happens/Nobody warns you."

After being hospitalized since the day after Thanksgiving, I learned today that she is coming home on CHRISTMAS DAY!! Her left side is weak, but she can get around with some support and a walker. Thankfully her house is safe and has a great layout - all one level, hardwood floors, etc. The docs have told her that her course will remain painless. I think home hospice might be in the works also, but not entirely sure yet.

I am SO GRATEFUL to be able to see her again and be with her! She has a whole network of friends who are willing to pitch in and do anything and everything that might be required and then some. My sister happens to be a fantastic cook and has already offered to whip up anything she wants at any time. And as a nurse, I want to make sure she has every kind of comfort and security measure we can provide. We all want to help take some of the burden off her daughter Kathy, who has been an absolute champ through all this.

This is a gift - probably the best one I will ever receive in this life.

That is some good news. Thanks for the update.

I am happy to hear that, R58. Good luck with everything you want to do for her!

Wonderful, OP. You are a good friend. Merry Christmas to all of you!

I am so sorry for your friend and that you are dealing with this. I lost my stepfather to glioblastoma. It’s a very cruel disease. And yes, it’s the type of cancer that strikes out of nowhere to healthy people. And yes, it’s very dangerous and inevitably the tumors grow back and become either inoperable or non-responsive to treatment. My stepfather had two craniectomies and also used the drug Avastin, which worked well until it didn’t.

This type of cancer doesn’t cross the brain barrier so it doesn’t lead to other excruciatingly painful cancers. I echo the other posters in that death is pretty much pain-free, and it’s fairly quick — my stepfather was talking and communicating with us and doing okay, he was only in really bad shape for about 3 days before passing.

A very cruel disease, please take care of yourself as well, in addition to supporting your friend.

This is an incurable cancer, sadly

Hi everyone - I was locked out over much of the holidays and haven't been able to post in a long time. This is perhaps the only place I will be able to share what I am about to -

Being a caregiver, even on a limited basis, is EXHAUSTING. The shift I was assigned for the last two months is every Wednesday, 8 am- 4 pm. I am not a morning person by any means - I am used to staying up late and not going to sleep until midnight or later, and try as I might, I can't adjust to that alarm going off at 7 am. The hospice caregivers do 4 overnights out of 5, from 11 pm to 8 am, and a shower aide comes twice a week during the day. All the rest is done by friends. I have crossed paths with a couple of her AA friends, who unfortunately have rubbed me the wrong way. One of them dropped out almost immediately with some bogus excuse about her sick mother. Good riddance.

There is not a lot to do for her physically except walk her to the bathroom, which she insists on doing - the problem is that her left side is completely useless and her balance is questionable at best. She has several assistive devices - a cane, a small rolling walker, and a wheelchair. It's about 15 or 16 steps to the bathroom down her hallway which is not wide enough for two people, so you have to either lead or follow her. She refuses to to use the cane or the walker and I am terrified her left leg is going to give out at any time. She admits she has no feeling in her left foot - yet she adamantly refuses to use the cane or the walker, much less the wheelchair to get to the bathroom and back. At my last visit I adamantly insisted that she use the cane for each trip - she got a little snippy with me but she did comply. To me the walks to the bathroom are an unnecessary risk- it's not like she is going to gain any strength, and a fall would be disastrous. She has a small little commode which could easily be placed right next to her bed or chair which would require only one simple transfer on and off. I have no qualms whatsoever about emptying and cleaning it, but so far have not been able to convince her to even bring it into the living room where the hospital bed is.

Thankfully she is not in any pain, but she is always cold and keeps the house extremely hot, so I learned quick to dress accordingly - but it tends to make me tired and sleepier than I already am, no matter how much coffee I drink. And maybe I've talked about this before, but it's like a light is slowly going out, personality wise - it's hard to engage her in conversation, even for short periods. And this is the only place I can admit to saying this - but I am starting to DREAD going. Which of course makes me feel selfish and guilty - but it amounts to 8 hours of sitting around in a way too hot house waiting for the next perilous trip to the bathroom. I've been at this for over two months now, every Wednesday since New Years. It takes me two full days to recover: my sleep schedule is way off kilter and I am tired and depressed ALL THE TIME.

I don't have any idea how or even if to handle trying to reduce my hours, which would probably disrupt the whole schedule, but I don't think I can handle this for much longer. And I feel like SHIT for even admitting this - but it's the truth. I am 72, with bad knees (she's 74) and th anxiety, fear, depression and exhaustion are beginning to take their toll.

I don't know what I'm going to do - I just wanted to admit this out loud to myself in a safe space. Please don't judge-

It’s a brutal job - a crime nurses are paid so little. Very noble of you to volunteer. And completely understandable that you are burning out. In the situations I’ve had, it’s shocking how quickly it all ends. Can be months - and then it’s over. And you can feel proud of the kindness you’ve shown. But also take care of yourself along the way.

did not dler Brian die of a Brain Tumor too? Did muriel save those old threads, could someone post them here?

Sorry, this is very hard news to cope with OP.

It may be taxing on you to do the 8 hour shift each Wednesday, but you are doing a good thing. After she passes on, you will be glad you were there for her as her friend.

Yes, thank you for returning to make it all about you.

R46 Bitch stop with the misconceptions, I get so tired of Facebook shit.

Have you checked her foot for an expiration date?

OP, I am so very sorry. But I’m also really happy that she has you. You’re without a doubt a good person and it’s a blessing for her to have you.

Remember to take care of you during this time and not just your friend. I hope you have someone you can talk to. Really, I’m so sorry for this bad news you’ve received. Bless that poor lady.

My Mom was diagnosed with Stage IV Glioblastoma right around Thanksgiving 2022. This thread is helping me so much. Thank you OP and all the commenters!

This week she asked me if I wanted her to bring any messages to my loved ones in heaven because she will be seeing them soon. I was reduced to a puddle because although she started out saying it as a joke, we both realized in that moment it was true.

I pray that her end is as painless and quick as some here have said it may be with this illness. Praying for you, too OP. Thanks for passing this on.

Would it be very costly to install handrails along both walls (for her weaker side traveling there and back) the short length of the hallway to the bathroom?

Things are taking a slow downhill slide. She is now confined to the hospital bed in her living room, as her left leg is completely nonfunctional. She has a catheter in. Bed baths only from the hospice workers; all the friends who were doing direct caregiving are now just visitors.

Yesterday I visited to drop off groceries and dinner for her and the overnight hospice worker. Everyone entering is now told to wear a mask. She has developed a constant dry hacking cough which seemed to be worse than the last time I saw her. She has a pulse oximeter (that device you put on your finger to measure your oxygen level) and hers was 77 and then 75. I told her we needed to call the hospice RN and she did. The nurse ordered oxygen delivery immediately and arrived at the house within 20 minutes, with the oxygen delivery guy right behind her. Once she got the oxygen on, she seemed to relax a little and her color improved markedly. After about 5 minutes her oxygen level was up to 88. The nurse finished her exam, took her temp, B/P, and left after about a half hour or so.

For awhile now, I had been planning to write her a letter, thanking her for being such a good friend to me through the years - but after the nurse left and the hospice aide was in the kitchen getting dinner ready, I just sat at her bedside and just verbally poured out everything I had planned to write, recalling example after example of everything she's done through the years, and telling her all the things I admire about her. It wasn't sad or maudlin at all - neither one of us cried - in fact, several times we started laughing - but I was able to tell her what a gift she has been to me for so long.

This was yesterday afternoon, on a beautiful sunny spring day. I'm glad I took the opportunity because saying all that face to face was good for both of us. And we both know that time is running short. Before the nurse left, she had given her a pain pill and an Ativan, so I slipped out the door as she was falling asleep.

OP, I expressed exactly the same sentiment to the doctor who told me my husband was dying (in those blunt terms). I said, "He is looking into the abyss, and I am, too."

Now I dread the loss of my friends, having lost two of six since my husband. Life just never gets easier.

I wish you and your friend the best.