Friend has Brain Cancer Glioblastoma: What are the next steps?

thankyou for your reply, you know either he isolates himself by ignoring friends calls, family does call, but geographically there is alot distance between us. My sister who lives in calif, is coming for a couple of weeks which will be nice. But contact with family waxes and wans, one sisterinlaw said she was not calling weekly because she felt he might be overhwelmed by the calls and the conversations are brief. I told she should continue to call weekly, its good for him to have contact, because too easily he isolates himself. I know that cognitvely its hard for him to follow conversations, but i think its still important. we have been stuck in the house due to weather yesterday we went out to lunch, since he is confined to a w/c. or his recliner, i have an aide through va services that allows some releif. I know everyone deals with this differently but i do wish his sibs would take the time to visit more frequently 2 are in mass , 1 in fla, the later is retired. but they are going off on cruises in the next 2 weeks. i guess i feel a little jealous this was always the time we went camping in fla . My daughter 36 single also deals with it differently i wish she would call more often, but i know she is in a new relationship and does come about once a month when she has a string of days off, she is a nurse working 12 hr shift. Days like today i just feel so isolated and alone, his appetite is poor, i cook things he normally likes and he suddenly doesn't like them . The aid showers him for me, he has refused those going 2 weeks without one, but finally is acquiescing. Today was the worst, he could transfer very well onto the toilet from the w/c, i am always vigilant for whats the next sign of decline because of where it is at it s har d to say. He is in hospice just started t his month, i feel so sad for him and wish that family realized that even the smallest tel call just lets him know he's still thought off. Sorry, its been a bad day today we were up most of the night, he has to pee at night it seems 4 or 5 times, plus when its time to go to bed, he can't seem to summon the energy to get inthe w/c to go. i just got a hospital bed he's not happy using it, but i feel like it will be easier to transfer in and out with assist. I don't want him to have a catheter, and he is defiant re; depends so we just go along. hoping to try out using the urinal in this bed as the matteress is firmer than the pillowtop where he sinks and cannot grasp. it. we will see. The kicker is that the onocologist told my daughter who is an rn in late jan that it was a matter of weeks, he was not willing to be so candid with us, and guess what it now is 2 months so somuch for that, i just feel we waiting for and him to die. i want his quality of life to be the best it can. so prefer for him to remain at home.

That all sounds like what we went through. Family and friends were of very little help. I know he wanted to see more people but very few bothered. When he wasn’t so bad, he was able to call people on his phone when he was in the hospital and I wasn’t there in the room with him. It would be so much nicer if people had come to visit him in person though. He had a lot of family in the area too, and no one really visited other than his sister and she only saw him about three times during that entire time.

I have the hospital bed for him at home when he’d come home from the hospital. He didn’t like it, but it was our only option. He went back back-and-forth between the hospital and home at least four or five times because the sodium levels kept getting low. And they weren’t telling me to keep a check on how much sodium he was taking and that became a major issue with his health. I felt like his hospital and rehab care were not as good as they could’ve been even though the facilities are supposedly high rated.

When he started needing to urinate so much during the night, a friend of mine told me that I should get diapers for him, which I did, and that helped tremendously. It let me get some sleep during the night.

I completely understand the loneliness and the helplessness. At times I felt like I could just shake the cancer out of him and make him better. But I knew that wasn’t a possibility. The loneliness gets worse after they die or at least it has for me. After he died, actually had a couple of friends no longer wanting to have contact with me. To this day, I don’t know why. I don’t know if people don’t want to face their own mortality or if it’s something else.

I was lucky to find a therapist around the time he was dying. He died toward the end of Covid and all during the time he was sick I kept trying to find a therapist and I was having no luck. so having a therapist has really helped me. Not long after he died. I went to a couple of different grief support groups, which kind of helped. Monday actually marks the third anniversary of him being diagnosed. I seem to be doing better now, but it’s still difficult. But for the first 2 1/2 years, I cried constantly. It’s tough watching your spouse die. And then not having much support from people you expected it from makes it even worse. Plus, people expect you to be over it within a few months after they pass and that’s not the case. Until someone has gone through it, they don’t understand.

His doctors never gave us a prognosis of how long he might last. He asked on occasion, but they would be very evasive. I knew you didn’t have much longer the way I saw him going downhill. When I finally brought him home for hospice, I asked the supervisor lady who was running the hospice what she thought. She just blurted out that he’s got about a week most likely because she sees it all the time. I was surprised she was so blunt. But she was pretty close. He lasted 11 days in hospice at home. And I’m glad I had him at the house. I hope you’re able to keep your husband at the house too. I think that’s the best.

He died at 8 o’clock at night. During the day he had started breathing, kind of funny. I felt that was a sign that he didn’t have much longer. Around 730 that night, he started taking very few breaths. I knew it was getting close. And I was by his side when he took his last breath. It was a weird experience, but I’m glad I was there for him. It was just me and him. I called hospice and the lady took about an hour to get to the house. Once she arrived and did the pronouncement, she told me I could call the funeral home. It took them two hours to get there. She was only in the house for about 20 minutes and then left. But I was with him those three hours alone other than a few minutes she was there. I actually didn’t mind it that much. I kept talking to him. When the funeral home arrived, I wanted to go with him, but I knew there was no point anymore. I was at the funeral home the next day at noon making the arrangements.

I wish you the best.

@lindabillysave1, as a mom this must be so hard. How is your son doing on treatment? How are you doing?

First off find a real neurooncologist. Depending on location you may need a neurosurgeon with a sub specialty. Ie if near a cranial nerve a skull base neurosurgeon may be best. Testing for methylation is important part of the staging.

Into his 3rd week radiation and chemo pill. He’s fine but I’m a mess.

If methylated, tmz is very tolerable. 5 days a month for 6-12 rounds. The optune device may suppress it well. Some patients in the trials are tumor free at 7 years. The device is annoying and customer satisfaction does not seem a priority but it does seem to increase survival and they have new transistor patches that are easier to apply.

Linda, I get it. It so hard to watch from the sidelines. I know you would switch places with him in a heartbeat. Is there some action that you could do that he would appreciate? It can help that helpless feeling to be able to "do" something. Do you live close by?

My husband had/has glioblastoma in the left temporal lobe discovered in the emergency room after mini seizures and a fall and was told 6 months to live. We found a neurosurgen Dr Allen Friedman at Duke in Durham NC who did a full resection crainiotimy (Oct 2024), 6 mos of chemo and radiation and is now taking chemo pills 5 days per month. It’s been rough yet he’s hiking 4 miles per day, eating healthy, enjoying the small things and fighting depression, 2 clean MRIs, Also know someone told they couldn’t have surgery, went to Duke, had surgery & it’s been 3 yrs so far. So, def get a 2nd opinion.

Thank you so much for sharing, it really helps. We are on the same path, just not quite there yet. How do you try to cope? Friend or family lunches, able to leave the house? I’ve lost contact with almost all people over the yrs and now need support but experience the same as with others that no one wants to be around a sad situation. Also have a cancer center grief counselor that is helping, binge watching tv series late at night and gym one every couple weeks. Having other issues with 2 sets of declining parents, forced into early retirement, finances,…Looking for ways to hang in there and it sounds like after losing him, the depression is going to be much worse. Just wondering how orhers manage to cope.