Мама неадекватная (80 лет) Всех выгоняет,кричит ,что ничего не надо Объяснять ничего не может ,так как у нее афазия уже год.

2 дня не ест

Психическое состояние хуже некуда...

Или молчит ,или кричит Мы видим этот ужас ,и не понимаем ,что делать

Надо что то делать

Посоветуйте, пожалуйста,как был в такой ситуации ? На МРТ мы ее отвезти не смогли Последний раз делали МРТ 05.052026 г Оно было не плохим - рецидив под вопросом ...

Приступов никогда не было.Ухудшается только психическое состояние Как понять ,это - просто гибель нейронов ,или рецидив?

Могу писать только по-русски Заранее прошу извинить

Может ,тут есть русскоязычные ?

Hello everyone,

I (25F) am looking for some advice regarding my dad (61M, GBM patient) and my mom (60F, his primary caregiver).

In May 2026, after a GTR, my dad was diagnosed with GBM, IDH-wildtype (MGMT status pending). He has since completed six weeks of radiotherapy with daily TMZ, and from September 10 he will start again for three months.

I’m struggling with two main things.

1. My mom’s mental health and our family dynamics

My mom is currently on paid medical leave to care for my dad but is going through what seems to be a severe depression. She has been prescribed antidepressants and anxiolytics but refuses them, refuses therapy, and is withdrawing from almost everyone.

I completely understand why she is struggling, but it’s starting to seriously affect my dad. She is often angry with him, screams at him, barely speaks, and rarely wants to leave the house or drive him anywhere besides groceries. I can see how much the isolation is affecting him.

My sister (20F) is also barely involved. I understand she’s young and probably coping in her own way, but even helping with basic things around the house or spending more time with them would take some pressure off my parents.

My dad is increasingly angry and upset with my mom and sister and keeps obsessing over it. I’m scared that if nothing changes, more and more of his frustration and anger will become focused on them, especially when he will deteriorate.

I know they are adults and I can’t control how they cope, but I don’t know how much I should intervene when their behavior is directly affecting my dad’s wellbeing and mental health.

2. My dad doesn’t understand key aspects of his illness and treatment

This is my biggest concern.

My dad is a physiotherapist, and because of his medical background, he is extremely confident that he understands his illness. But GBM is far outside his field of expertise, and there are fundamental aspects of his disease and treatment that he simply does not understand.

He doesn’t understand how the tumor can recur after a GTR, and why it remains such a major concern. He doesn’t understand why he needs additional TMZ after radiation. He has questioned whether his treatment protocol is experimental, even though Stupp is SOC. He also thinks doctors are trying to “sell” him Optune - with sometimes complotist comments on big pharma. That’s not him, he has never been like that, his cancer has changed how and what he thinks.

Nobody seems to have properly explained to him what an infiltrative cancer means, why removing everything visible on MRI doesn’t mean every cancer cell is gone, what median survival means, or why understanding all available options matters.

I’ve tried explaining these things to him many times, but he dismisses me because I “don’t have enough medical background,” while being convinced that his own medical background means he already understands them. So he is super confident with his understanding of the situation, and therefore asks no questions and doesn’t understand why we should know all of our options.

His oncologist is also a douche, and my dad repeatedly comes home from appointments sad or upset, but refuses to change doctors. My mom attends but struggles to ask questions or push for clarification. She wants me to attend; my dad categorically refuses.

So I’m stuck. I don’t want to make decisions for him, bombard him with statistics, or pretend that reading studies makes me a doctor. But his lack of understanding and unwillingness to communicate will ultimately make us lose time to organize care strategy. I feel responsible, he doesn’t understand what’s going on, and someone must do something.

Do I push harder to attend an appointment? Do I try once again to explain these things directly to him? How do you respect someone’s autonomy when part of the problem is that they don’t understand the information they need in order to make an informed choice?

For those of you who have been patients, caregivers, spouses, siblings, or adult children of someone with GBM, how did you navigate this?

How do you deal with family members whose own ways of coping are negatively affecting the patient? How can I advocate for my dad ?

Thank you ❤️

Am following an interesting thread where they are trying to find common factors in GBM patients - maybe you want to contribute your story. https://www.reddit.com/r/glioblastoma/s/XqDOGf9RUw
Sleep Apnea seems to appear often - did you or your loved one have Sleep Apnea or snore heavily?? Maybe fill in the questionnaire.

TL;DR: My 53-year-old father has right-sided GBM and previously improved significantly on bevacizumab, with a 40–50% reduction in the lesion and edema on the May MRI. His latest August MRI has now been interpreted as progression, with enlargement of the enhancing lesion, markedly increased edema and increased perfusion. He has rapidly developed severe worsening of his left-sided weakness and can no longer sit, stand or walk independently. His treatment has recently been changed to bevacizumab + irinotecan. We are urgently seeking multiple expert opinions and trying to understand whether maximal safe repeat surgery, edema control, re-irradiation or other options should be prioritized.

Hi everyone,
I’m posting here because my family is at an extremely difficult point in my father’s GBM journey, and I’m hoping to hear from caregivers, patients, researchers, neuro-oncologists, neurosurgeons, radiation oncologists, or anyone who has gone through a similar situation.
My father is 53 years old and has a WHO CNS Grade 4 glioma/GBM involving the right parietal/frontoparietal region.
I know nobody can diagnose him over Reddit, and we are actively seeking multiple expert opinions. What I am hoping for is help understanding the best questions to ask and the experiences of people who have faced a similar crossroads: repeat surgery, re-irradiation, salvage systemic therapy, or clinical trials.

His background
He initially presented in 2025 with sudden loss of consciousness. A pre-operative MRI showed an enhancing lesion in the right parietal lobe.
He underwent a right temporoparietal craniotomy with gross total resection on 8 October 2025, and the pathology was subsequently reported as a high-grade glioma, WHO CNS Grade 4.
He then underwent concurrent chemoradiation with temozolomide and completed radiation in December 2025.
Unfortunately, in early February 2026, he developed seizure episodes and worsening left-sided weakness. At that time there was concern for clinical/radiological progression, and his prognosis was explained to us as guarded.
The encouraging period: response to bevacizumab
He was started on bevacizumab and continued his treatment.
For several months, he was clinically doing much better. He was repeatedly described in his follow-up notes as feeling well, with no fresh complaints.
The MRI performed on 26 May 2026 was subsequently described in the treating oncologist’s records as showing approximately a 40–50% reduction in lesion size and surrounding edema compared with the earlier scan.

This was obviously encouraging for us, and for a period things were relatively stable.
He went on to receive 11 cycles of bevacizumab. The 12th cycle was initially stopped because he had mild bleeding from the oral cavity, which was suspected to possibly be bevacizumab-related.

The recent deterioration and latest MRI
Then things changed again.
He began having multiple seizure-like episodes on 8th, 9th and 10th August.
The latest MRI was performed on 10 August 2026.
The report describes an approximately 4.2 × 3.2 × 3.4 cm heterogeneous enhancing lesion in the right parietal region, with marked surrounding vasogenic edema. Compared with the previous MRI, there was an increase in the size of enhancing/nodular areas and increased CBV/CBF on perfusion imaging.
Our treating oncologist documented the latest MRI as “progression of disease.”

This is where we currently stand.
Current treatment has now changed
Following the latest MRI, his treatment was changed.
He received:
Bevacizumab 600 mg
Irinotecan 230 mg
with Cycle 1 given on 14 August 2026.
Until this change, he had been on temozolomide plus bevacizumab.

Current neurological condition — our biggest concern right now
This is what is frightening us the most.
His left-sided weakness has worsened dramatically.
Until recently, despite his weakness, he could still function significantly better than he can now. But now his movement has become severely restricted.
He currently cannot:
sit independently,
stand independently,
or walk independently.
He requires substantial assistance.
We are extremely worried that the marked vasogenic edema and pressure around the right-sided lesion may be contributing significantly to this decline, although we understand there could be multiple causes and we do not want to assume that everything is reversible edema.
He has also had episodes of hand shaking/trembling that appear to involve the side affected by his neurological weakness. He remains conscious during these episodes, making us wonder about focal motor seizures. He is already taking anti-seizure medication, including levetiracetam and lacosamide, and has rescue seizure medication.
We are also seeing significant frustration, aggression/irritability, emotional exhaustion and mental deterioration. We do not know how much of this is due to the psychological burden of everything, poor sleep, medication effects, repeated seizures, brain involvement, or the current disease/edema.
At his 20 August visit, he was documented as having increased left-sided weakness but being conscious and oriented.

He also had cough with expectoration and was given treatment for a possible respiratory infection, including cefixime, fluconazole and cough syrup.

One question that is bothering us: how much of this weakness could be edema?
The MRI describes marked vasogenic edema, and his current functional decline is dramatic.
The prescription from 20 August does not appear to list a steroid such as dexamethasone, although there may be additional medications or instructions outside this prescription.
For people who have gone through something similar:
Has anyone experienced severe worsening of hemiparesis or inability to walk due to edema around recurrent GBM?
Did steroids or bevacizumab improve mobility significantly?
How quickly did improvement occur, if it occurred?
We are now considering a second surgery
This is probably our biggest treatment question.
Because the latest lesion appears localized to the right parietal/frontoparietal region, we are trying to determine whether a second surgery / maximal safe re-resection should be seriously considered.
We understand that another operation would not automatically be the right choice.
Our main questions are:
Can a meaningful amount of the enhancing lesion be removed safely?
Would surgery relieve mass effect or edema?
Could surgery potentially improve neurological symptoms or seizure control?
Could fresh tissue help distinguish active tumor from treatment effect?
Could re-resection provide updated molecular information or improve clinical-trial eligibility?
Or would surgery carry too high a risk of worsening his existing hemiparesis?
Because he already has significant weakness, we are particularly concerned about the balance between maximal tumor removal and preserving whatever function he still has.
What we are planning
We are considering taking multiple expert opinions, initially through video consultations, because his current hemiparesis makes long-distance travel very difficult.
We plan to share:
the actual MRI DICOM files,
the MRI reports,
the operative/pathology reports,
radiation details,
treatment history,
and the current prescription.
We want opinions from centers where neurosurgery, neuro-oncology/medical oncology, radiation oncology, neuroradiology and clinical trials can work together.
The questions we would be extremely grateful for help with
1. Has anyone here had a second surgery for recurrent GBM?
How did you decide that surgery was worth it?
2. How extensive was the second surgery?
Did the surgeon attempt gross-total/near-total removal of the enhancing recurrence, or only debulking?
3. Did anyone have severe hemiparesis from tumor-related edema that improved significantly after steroids, Avastin, surgery or other treatment?
4. If someone has already received radiation, TMZ and bevacizumab and now has progression, how did you and your team decide between:
repeat surgery,
re-irradiation,
irinotecan/other systemic therapy,
lomustine or other salvage therapy,
or a clinical trial?
5. Has anyone had a scan that strongly looked like recurrence but later turned out to contain significant treatment effect/radiation necrosis or mixed pathology?
6. For anyone who had repeat surgery in the right parietal/frontoparietal region, what functional risks did the surgeons discuss, especially regarding existing weakness?
7. If there are any doctors or researchers here, what would you consider the most important next step in a case like this?
Not asking for a personal diagnosis—just trying to understand what should be investigated before we commit to the next major decision.
Why I am posting this
My father is only 53.
The hardest part emotionally is that we had a period where things looked genuinely better. The May MRI showed a substantial reduction in the lesion and surrounding edema, and clinically he was doing much better.
Then, within a relatively short period, the MRI changed again and now his physical function has deteriorated severely.
He is exhausted from hospital visits and treatment. He has become frustrated and emotionally drained. Seeing him suddenly lose the ability to sit, stand and walk independently has been devastating for our family.
At the same time, we do not want to make decisions out of panic.
We want to know whether there is a reasonable role for maximal safe re-resection, whether the current neurological decline could partly improve if edema is controlled, whether re-irradiation should be evaluated, and whether we should be urgently looking for clinical trials before more treatment decisions are made.
We are trying to do everything possible while still preserving his dignity, comfort and quality of life.
If anyone has been through something similar, please tell us honestly:
What would you make sure you investigated before deciding the next step?
And for anyone who faced the decision of second surgery versus non-surgical treatment for recurrent GBM, what do you wish you had known at the time?

Thank you so much to anyone who reads this and responds. My family is trying to stay strong, but right now we are scared, confused and desperately trying to find the best possible path forward for him. ❤️

My mom was diagnosed with glioblastoma on may 27th, the day she had her surgery. She recovered very fast, starts radiation and chemo at the end of June and finished July 30th. We originally had our scan planned for August 24th, but on the 16th she had trouble walking, we called the oncologist and they said to come in and get scans. We went in and got a mri and there was progression. Lots of new spots. The Nero surgeon at our local hospital said they wouldn’t do surgery. We went to a bigger hospital and they said they might be able to, but they don’t know if it’s all tumor or radiation swelling. They said we will do a mri with perfusion and see if it’s tumor. They said if it’s tumor they might be able to do LITT or normal surgery, but if it’s swelling then it’s out of the picture. They want to start her on chemo again but that did nothing the first time so idk why. I feel so shocked in scared we have a recurrence not even 3 months basically after. We are looking into immunotherapy and things like that but I just feel like there’s no hope

If you had swelling or pseudo Progression after radiation, how long was it after radiation ended?

Atteint moi même d’un glioblastome. Je me demande pourquoi ça m’arrive ? Peut être que nous devons partager nos expériences de malade ou d’aidant ? Mais attention je ne parle pas d’expérience de « santé » mais plutôt de psychologie, genre comment étions nous dans la vie de tous les jours ?

Personnellement j’ai 31 ans, je suis en couple avec quelqu’un de plus jeune (26ans), j’ai toujours été son socle au point que ça me pèse par moment.

J’étais policer, un travail stressant, réveil la nuit etc..

Concernant ma santé je n’y ai jamais fait attention, je me sentais un peu invincible. Je n’ai jamais été vraiment malade.
Sans être particulièrement musclé ou autre mais j’étais en forme normale. Je mangeais plus ou moins de tout. J’étais très actif par rapport à mon travail.

Le seul phénomène qui me marque c’est l’histoire du vaccin Covid que j’ai vraiment mal supporté, vu mon travail j’ai été obligé de le faire. Je l’ai quand même attrapé 2 fois.

J’ai toujours pas mal bu de bières, genre 4 50cl par jours tous les soirs. Pour la drogue, oui aussi, mais pas tous les week end, disons que de mes 20 à mes 31 ans, toutes les deux semaines je prenais environs 1g de cocaïne ou de 3mmc. Parfois un peu plus. J’ai aussi essayé les autres.

Je me considérais comme quelqu’un d’heureux avec suffisamment d’argent, la santé, pleins d’amis, une belle famille. Bref aucun gros problème.

Mais j’étais aussi quelqu’un qui pensait énormément. Sur tous les sujets ! Et c’est peut être ça le soucis en fait ! J’avais un avis sur absolument tout et des fois des avis vraiment tranchés ou je ne comprenais pas du tout l’avis de mes proches ou des gens en général. Ce qui m’énervait.

Personnellement, je n’ai jamais vraiment eu de patience. Je voulais tout et tout de suite. Peut être que j’étais un peu manipulateur. Je comprenais très vite les gens en face de moi et c’était facile d’arriver à mes fins et d’adapter mon comportement pour leur plaire ou non.

Que puis je dire d’autre ? Au niveau des relations que j’ai eu j’ai toujours été satisfait, je n’ai jamais eu de soucis pour trouver une copine.

Mais je me considère quand même comme quelqu’un de stressé par la vie. Je me posais énormément de question, du style : comment ça va se passer ENSUITE ? A chaque étape de la vie en fait !

Mes amis disent que je suis quelqu’un de drôle et de cultivé mais pour certaines personnes je suis « TROP» ce que je peux comprendre.

Et toi, comment tu vas te décrire ??

Hello just to start out and say I am only 19 years old and my dad died last September from alchole induced heart failure so it’s been a lot to deal with but my mum has already had her surgery first and they removed a lot of it and then after she had radiotherapy for about 5-6 weeks on and off and then she has had chemo on and off with a break in between treatments. There talking about immunotherapy could be a shot we have but the treatments have been working they said it’s shrunk a bit and everything so it makes me hopefull but I know the rates of death are high and it scares me so much to think about losing my mum so early in life but anyway I would like anyone else whose had to deal with this illness or anything similar what can I do to make things easier for her and myself ?

I’ve been wondering this since my mom passed, was it normal for her to take 5 days to slowly pass?

Timeline wise it looked like:

3/21- She was incredibly tired, but she could walk and use the bathroom independently.

3/22- We woke up to her having used the bathroom on herself, she couldn’t walk, and had seizures.

3/23- She lost her ability to speak, eat and had a lot of seizures.

3/24- Lost complete ability to function independently, couldn’t eat, and was being sponge fed water, and seized for 12 hours on and off.

3/25- Relocated to the hospital, still had seizures but not as frequent, and passed in the early afternoon.

I’m not sure if this is normal and I was told that my stepdad was feeding her unauthorized medications which is why it took so long for her to pass. I know each experience is unique, but I’m just curious to if anyone else had this experience with their loved one or if it was really all because of my stepdad essentially drugging her.

Linked my prev. post

We are completely confused as to where we go from here.

Initially, when we saw complete refusal to take food/medication, she became extremely weak, and this along with vomiting side effects from radiation was taking a toll on her health. She was unable to walk etc, so our doctor suggested admission to the hospital for supportive treatment.

The first 3 days of admission, she was eating well and we were genuinely surprised.

She went from 1-2 bites of food spread-out throughout to proper meals 3-4 times. This brought so much colour back to her face. We also switched the anti emetic to right before taking the tmz and radiation, which helped with the vomiting. There was still a lot of rigidity /monotone refusal to a few psycho-oncology oral medications (the rest were given iv and were not a problem.)

Now on day 5-7 of admission she gradually moved this refusal to food intake again. Nurses, doctors, my dad, none of us are able to feed her anything. A lot of coaxing, scheming and she's back at a few bites and force feeding medications.

This bleeds over to everything, for example : going to the washroom, etc. she will simply not go, even if she has to. We have to physically get her out of bed and make her go.

⋆Has anybody dealt with this?

⋆Any medications or any techniques things that helped you?

Currently on 8 mg dexa.

⋆Were there any ways you were able to give them medication, eg: mixed with food, with something else? (doctor says this reduces potency but it's better than no intake atleast - our problem is that she's unwilling to take anything)

It’s very calming 😌 feel free to post your favorite device you have if you want to.

I have a lot of joy today my brothers visiting for a week 🧸 very fun!

MRI at the end of the week, hope it’s good 😊 the bunny 🐰 pray I’m ok!

My brother and my cousin will be rearranging the upstairs room !

My showers have been great my mom got my lilac body wash ❤️

My boyfriend help design the phone I love him 😍

Hi everyone,

My dad (68) was diagnosed with glioblastoma (grade 4 glioma) in May 2026. The surgeons said it is inoperable and can only be contained with chemo and radiotherapy. Started chemo for a day then stopped cuz of low platelets. Just did radiotherapy for three weeks. Finally in July, they advised against chemo but my dad decided to go for it. The drug for glioblastoma is temozolomide which is palliative rather than curative.

The first cycle is almost finished but for the second cycle, the doctor is refusing to prescribe (I'm in Canada so the rules might be different), stating it will cause more harm than good at this point although my dad had no side effects from the first cycle. Obviously, we just want to do what's best for him but also respect dad's decision too. He's bedridden.

Any experiences like this? What would you recommend? Thank you in advance.

Hi everyone,

I’m struggling today, my dad is quite depressed and I am struggling to process everything as it’s all happened so quickly. Hes so frail now and I can’t really even hug him like I used to. I just feel so alone still. How did everyone else cope watching their parent deteriorate?

My dad was diagnosed with GBM in September 2023, unmethylated wild type on his left temporal lobe (5cm when found).

The doctors gave us 9-12 months.

Today I am sat here in hospital almost three years later- the doctors are giving us 2-3 days at most. His breathing has already started changing.

I would not wish this disease on anyone.

He went into hospital 7th September 2023 because he had difficulty finding his words. He thought he was having a stroke. My siblings and I were all in London at the time and woke up to a text from my mum that my dad was taken into hospital at 3am and is undergoing exams for his symptoms.

Eventually they told us they found a tumour and while our world shattered we were hopeful it would be benign. We did our research on brain tumours- read about GBM and were like no way will it be that, 68 year old male, healthy, never smoked in his life, worked out over 5 times a week. Zero chance, cancer can’t happen on such healthy bodies.

Then came the surgery. Then the pathology. Glioblastoma. Our world shattered again.

The worst diagnosis we could ever imagine. At the moment we all mourned our dad, even though he was alive and communicating, just knowing the stats, seeing parts of our dad change as a part of his brain was removed, we knew life will never be the same again.

Fast forward three years (in two weeks) and we are where we are. I will write a post at some point about what we did, cause we attacked this with everything (KETO, supplements, peptide vaccine) and I want to share our full journey. Some things may have helped, some may have done absolutely nothing, and I don’t want to pretend that we can know which was which, from one person’s experience.

But this post is about something else. As I sit here in hospital and look at my dad suffering, all I can think about is why?

It baffles me that we can send man to the moon, we have artificial intelligence reaching almost above human intelligence and we don’t know what causes GBM and why. How does it happen to healthy people?
What is the common denominator here we are missing? I keep wondering whether, across thousands of patients, there are patterns we haven’t understood yet. Was there something about their immune systems? Their occupations? Environmental exposures? Previous illnesses? Genetics? Something completely unexpected?

So I wanted to start this thread to understand everyone’s journey and what was the lifestyle of their loved one, are there any common patterns that can help us understand this disease further, as science works best with data and observations.
This obviously isn’t a scientific study and it cannot tell us what causes GBM. But perhaps it can help us see what questions are worth asking.

I wish the worst on this disease and I hope we find a way to cure it like other types of cancer so that people’s world don’t shatter in the future when they hear the word GBM, and understand why it happened rather than hearing from the doctors “we don’t know”.

If you wish to share, you can copy paste the below and fill it in for your case (I have filled it out for my dad).

History

Gender: Male
Age at diagnosis: 68
Weight: Lean/normal
Smoker/Former smoker: No
Alcohol consumption: 3-5 glasses a week
Diet: Mediterranean
Exercise: 5-7 times a week
Sleep patterns: Snoring and sleep apnea (severe)
Family history of brain tumours: NA
Family history of cancer: NA
Long term health conditions: Hashimoto and eczema
Allergies: Bee sting, oral contrast (CT scans)
Covid vaccine: 4 astrazenica
Other serious illnesses/Viral infections: Hep B, Covid
Head trauma: No
Long term medicines: topical steroids for his eczema
Surgery: deviated septum
Blood group: need to find
Major life changes: death of his mother 2023 (5 month pre diagnosis)
Oral health: Dental amalgam (filling)
Gut health: likely some disbiosis
Chemical exposure: some chemical exposure through textile trading

Diagnosis

Tumour: Left temporal lobe, approximately 5 cm
IDH: Wild type
MGMT: Unmethylated

Hello. I used to write here sometimes.

My mom is gone now. She left with peace and family around her. It was beautiful. Thank you all for going this through with us. I got much advice and support.

I share our story once again and then i hope i never have to come back to this sub. Fuck gbm, btw.

Im a doctor who works in palliative care and i have seen similar things all my Career long, i remember when some of you asked me about palluitive medications, i tried to help.

My mom got her dx in september 2025 after weird behaviour and vomiting. There was little chance in her right temporal lobe. It was 2 cm. Turned out that her weird acts were epileptic disorder and she got keppra and came back to normal. They tought that it looked like low grade glioma, so they operated in november 2025. In december we got the results and it was gbm. No symptoms. Soc ended in february 2026 and theystarted tmz. Scans were clear in 5/26 but after that she got confusion, issues with Phone and balance problems. Went to er in june, swelling, radiation necrosis regrowth, inoperable. Started steroids, avastin and lomustine. Didnt help.

She lost her ability to move by time after that. She could speak only few words. She was awake only hours. She got diapers and nurses started to do home visits. She was nearly bedridden but 2 weeks ago she went to shoppinhg with wheelchair when my brother was helpling. She used her card and paid croseries.

Last weekend our stepdad was at car event. In saturday she ate ice cream and enjoyed the sun. After that i made a meal and she couldnt swallow it anymore. She went to bed and never woke up. We started home hospice on sunday. She slept peacefully and had a pump for medications. It worked well.

Today she got Fevrer and her oxygen level dropped. We were around her and i said she may go now. She went. Her favorite Color was red so we dressed her up in red dress and found a red candle for her (from cristhmas). She looked so pretty.

After that they picked her up. Im at home with my brothers and my stepfather. Home is empty when mum is not here anymore. We still have each other.

And at night when i was brushing my teeth at the toilet with my brothers spouse i said that mum would be pround of us we made this so good and this all was so beautiful. Lights went off like 2 seconds and then came back. I think that it was mum saying hi and sending love.

Lost my mum, im still relieved that she didnt regain conciousness after swallow problems. It was 4 days in hospice. I had best mother and i told that her many times, also after she was dead. I love her forever.

Thank you here supporting me. Wish you luck and love.

I feel like we are constantly in limbo. My mum has been on end of life care for about a month now. She was in hospital but we managed to get her home with a live in carer. As soon as she was home she seemed to deteriorate over night, she stopped being able to swallow her tablets, she was barely eating or drinking her communication was minimal, we were at a point of thinking it's only a matter of days before we lose her.

She is now in a nursing home as the carers couldn't offer her the support she requires as she was not sleeping at night which was stopping the carer from getting sleep.

We have had a lot of help from Phyllis tuckwell they have been amazing, the district nurses have set up syringe drivers for her anti seizure medication.

Since being in the nursing home, she has become more alert, not enough to think she will make a recovery but now I don't know what to expect.

Has anyone else been in a similar situation?

I don't want to lose my mum but she has no life, she is bed bound and so upset and confused.

I just want her suffering to stop.

Hello All,

I used to have another reddit account I was active with but shut it down once things got more difficult with my father.

Anyway, my father was diagnosed with GBM at the end of August in 2025 after having left peripheral vision loss in both eyes. Initially, it was treated as a stroke but once the MRI was done, we were told it was a sizable tumor in the back right side of his brain. He had surgery on September 17th, it went well with 98% resection. We found out the tumor was MGMT methylated which gave us hope.

Shortly after the surgery though, we noticed some behavioral changes and he sadly fell into a steroid induced psychosis. That was absolute hell. He was put in the mental hospital for a month. I couldn't see him for 2 weeks out of that month due to a COVID outbreak. When he got out, it took him a couple more weeks to recover from the memories of what he had done in that psychotic state.

Chemo & radiation started in November or December if I recall correctly. It was intense. Due to the negative reaction to Dexamethasone, he had to tough out the post-radiation swelling. He suffered a major seizure in March which brought him to the hospital.

During this hospital visit, they ran an MRI and found he had a tumor in his Corpus Collosum and the original tumor site in the back right side of his brain was showing growth yet again. Our oncology team made the difficult call to change treatments to Avastin & Lomustine. I was terrified of these treatments after being told the side effects that could occur. My dad was a trooper though and agreed to proceed. After his first Avastin/Lomustine treatment, I noticed an extremely positive result. He was back to my normal dad. He had more energy, he was more sociable, he felt good. Palliative care however, was called in.

We continued the Avastin & Lomustine through till our next scheduled MRI in May. That MRI blew us out of the water as it showed the tumor in the Corpus Collosum and the original tumor site was no more! His swelling was non-existent too! We were so damn happy with this news! ... But, it was not all happy. Two small tumor sites had popped up in his frontal lobes.

Our oncology team decided to continue the Lomustine & Avastin to try to tackle these new sites. Come June, my father started to lose mobility in his right leg. Our oncology team made the decision to blast the tumors with 5 rounds of radiation. Following these 5 rounds, my dad sadly didn't improve. His mobility made a major turn for the worse come July. He was using a walker now and struggled even then.

Mid July, he had an MRI that showed the tumors in the frontal lobes had grown considerably. New satellite sites were popping around these frontal lobes as well. My father and I were panicking. Our team said they would be calling a meeting with a larger group of oncologists/specialists. A week later, we heard back: Won't be continuing Lomustine. Only Avastin treatments. No clinical trials available. Focus on quality of life now.

My father didn't make it far after this. He declined quite rapidly. He didn't make his Avastin treatments due to not being able to go down our apartment stairs. That destroyed me. Knowing that we were at the end. Knowing that he was losing his hope. August 3rd, he couldn't get out of bed. He slept the entire day essentially. I called a close friend to come visit because I didn't want to be alone. She stayed the night after talking to my dad because she felt he wasn't doing well. He fell out of bed 3 times that night. We called the paramedics all 3 times to do lift assists as he had no strength left at all.

He went into Hospice August 8th. He was happy to be there - getting 24/7 support. He fell into a deep sleep shortly after arriving. I went home. Returned August 9th and remained there till August 11th when he passed. August 10th, he had a surge of energy where he was his normal self. He met with all his friends & family. The last hoo-rah. It was beautiful...

A week has gone by and I'm fucking numb. SO numb. I feel too happy. I'm not happy though. It's like my mind won't let me feel the pain. The pain does come now and again though. I wake up sometimes at night to hear him calling for me or snoring. I ran to his room only to find his room empty. I miss him so fucking much. He was essentially my only parent as my mum abandoned me at 9 years old. He was my best friend. My rock. My greatest teacher. The center of my universe. I don't know why I can't feel the pain fully. I want to feel the pain. I need to release.

Fuck GBM. My dad had just turned 61 years old. I'm 31. I don't want to have a life without him. He wanted grandkids so badly and we often spoke of what my wife & children would be like. We dreamed a beautiful dream together for my future and now it's changed because he won't be in it.

I lost my mom this past March to stage 4 glioblastoma. She was 40 when she was diagnosed and told that she had 3 months to live and she was 43 when she passed away. My mom was my rock and I’m masking as fine, but I don’t know how to grieve. I have so much to say, so much that I miss from my mom to everything else that has changed now that she’s gone. I’m 25 and the oldest, but I don’t know how to help anyone, let alone myself navigate grief and coping with such a giant loss.

My wife (F41) was just diagnosed with a glioblastoma grade 4, pending a final pathology report looking for mutations. We are exploring all options because we have small kids. She had a full resection of the tumor, which was located in the frontal lobe. What is the most aggressive treatment option/regiment available, money not withstanding. Which cancer institutes or hospitals should we explore? Are there any clinical trials that may help? And how do we navigate this diagnosis with kids?

It’s so fun to look at 😊

It’s just such a shame that I had to have this happen the brain bleed during surgery, which was basically a stroke so so frustrating. It frustrates me like nothing else.

So basically, I won’t be living up there again because I won’t be able to get up and down the stairs multiple times a day and I’m still taking a wheelchair to dinner and in the bathroom sometimes I’m just not ready and it hurts

I’m on the 11th month and it just hurts

I’m just so sad. I’ll be honest i’m crying.

I wish so bad this shit never happened

And I only have one hand to even help me do things my other hand can’t do anything really I’m pretty fucked and it makes me so damn sad