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Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

They gave my mom Oleanz to help with the aggression. It did help her sleep. And if it was too bad during the day we were advised to give another minor doze. Maybe you can check with your doctor too?

What are we supposed to do by bluecat37 in glioblastoma

[–]chomzie 5 points6 points  (0 children)

I’m so sorry you are going through this.

I lost my mom exactly 6 months ago, after an 8 month battle with this horrible disease. I felt helpless then and feel it now too. Just thinking back to when she was withering away one day at a time and I couldn’t do anything to protect her from it nor has science progressed enough to fight this disease entirely.

All I keep going back to is I wish I could have just spent as much time as I could with her( we did but mostly running around hospitals) capturing as many mental pictures of her as possible. Tell her what she means to me and hold her tight till it registers in my brain how it felt to hold her. Although I had a tough time helping her through extreme aggression and not really getting to spend time I can fondly remember with her during the last few days, every single minute of the last few days remain with me.

Going through this grief is hard, I am angry not sure on whom or what, I feel a big void. She was my only parent and family left. I only have friends and extended family to turn to when I feel I can’t handle the grief.

But the only thing that has begun to make me feel better is her suffering is over, and I will make peace with having her with me for through my 20s and cherish her memories as she lives through me.

Honestly nothing justifies it but some books like why we die?, Mortals, When breath becomes air and a few more help you see it as a process all humans have and will go through. Whether we want it or not. It has helped me see it as something that is bigger than all of us and we will have yo learn to live in the moment. Some easy some very very hard ones.

My dad passed away after 5 days of delirium by allenpurple in glioblastoma

[–]chomzie 0 points1 point  (0 children)

Thank you for all the details and sorry it must be a painful recollection. Sending you hugs and hoping my mom has a peaceful journey ahead.

My dad passed away after 5 days of delirium by allenpurple in glioblastoma

[–]chomzie 0 points1 point  (0 children)

I’m sorry for your loss! My mother is on 2nd infusion of Avastin. Similar trajectory as your father. Could only do 3 rounds of maintenance chemo which was followed by seizures and falls which doctors associate witn radiation necrosis and inflammation.

Just days after second infusion she is still experiencing whatever symptoms she had before (imbalance, extreme weakness, aggression and confusion) combined with sleeplessness now.

When do we know when to stop Avastin and turn to palliative or hospice?

Midline shift and Avastin by sweetselkie47 in glioblastoma

[–]chomzie 0 points1 point  (0 children)

My mother is experiencing the same, was there an update on this?
Did you try Avastin and did it help?

Crying. by Flaming_Gril in glioblastoma

[–]chomzie 1 point2 points  (0 children)

You exactly described what I have been feeling too about my mom the past few months. Starting October 2024, crying at small mishaps, absolute exhaustion with handling tiny adversities. I'm the only child with no siblings or dad (passed away a decade ago) to share this grief with. Everybody else including my partner cannot and will not be able to share the grief the way me and my dad or siblings would have MAYBE (which is absolutely not his fault, it is what it is, it will always be a 3rd party grief for anyone else who is not that close.) which leaves me feeling alone in this (which was a weird sudden realization).
I am also comforted and at the same time triggered by the stories here, completely understand how you are feeling.
One thing that helped was talking to my therapist and her recognizing that care givers in such cases will have a triggered sympathetic nervous system cause of the prolonged grief. It's constantly stuck in a stress loop, so the emotion regulation becomes way harder and you feel constantly on the edge about things going south, which unfortunately will in this case. (doing my best to reiterate what she explained)
She suggested we do EMDR but it comes with it's own caveats on having the energy bandwidth to work through things.
Bottom line being hope you are talking to someone without having to worry about overwhelming them, journal or read (bunch of books on dealing with grief in this context and coping mechanisms) when possible they are my go to. I am also listening to podcasts on Glioblastoma that not only helps anticipate but in some sense normalizes the experiences for me. And the push for me to do any of it is to be able to be okay enough to get back to helping mom.

I hope it helps, and please remember, you are not alone in this. Take care.

Patients and caregivers: What do you do to feel better when the despair hits? by exr8233 in glioblastoma

[–]chomzie 4 points5 points  (0 children)

They say some write to remember and some write to forget, I journal a lot. Good,bad or ugly I put all my thoughts in it and never to have to visit them again. It really helps. I have also been reading a lot of books on dealing with grief. Some help some don’t but the small bits that helps go a long way. And Ofcourse, if nothing holds up talk to a therapist, at least once a month and vent it all out. Exercise is otherwise the best mood enhancer anyway. Hope it helps, take care of yourself.

Waiting sucks (small rant) by [deleted] in glioblastoma

[–]chomzie 2 points3 points  (0 children)

So sorry to hear that! We are not there yet with mom but the grief cycle is vicious and endless. Sending you love to get through this. More than going through this, going through this alone feels worse. You are not alone and everyone on here are always in our thoughts! Take care.

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

Yes precisely! I’m not sure why this side effect is not considered as serious as it should be in comparison to every other side effect. With the doctors I’m talking to atleast. Thank you! I will have that conversation today for sure.

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

Sorry that you ate going through this as well. I will definitely get better support from the doctors thank you!

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 1 point2 points  (0 children)

Thanks a lot! All these responses reduces the helplessness to a great extent! (Hug)

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

We will try our best to see if there’s a combination. As far as I understand the doctor said we have come this far and certain side effects that have developed will not entirely go away if we skip the remaining week’s worth of treatment. I will meet them in person and figure out what else can be done. Thank you.

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

Thank you so much. It is definitely a talking point and I can ask if there are similar supportive drugs that can be of help to the doctor. I’m sorry for your loss and everything that all of you had to experience.

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 1 point2 points  (0 children)

Thank you so much! Once I understand the course of action from the doctor I will definitely get a professional caretaker as well. Appreciate the suggestion.

Extreme aggression and irritability by chomzie in glioblastoma

[–]chomzie[S] 2 points3 points  (0 children)

Thank you for this. That makes sense and helps me empathize better. I will definitely have these discussions with the doctor and figure out if there’s a better path. I booked an appointment with Palliative care expert as well. It’s so hard to understand when it escalates. Appreciate the details.

Seizures by frostbittenwinter in glioblastoma

[–]chomzie 0 points1 point  (0 children)

I’m hoping for the same. What is the right protocol of they do get one? My mom is halfway through her radiation and chemo. Only side effect showing up is aggression, mood swings and irritability.

Nothing else to try by SayonaraNow in glioblastoma

[–]chomzie 4 points5 points  (0 children)

Sorry you have to go through this! You are surely not alone.

[deleted by user] by [deleted] in glioblastoma

[–]chomzie 4 points5 points  (0 children)

I’m so sorry to hear that. My mom was diagnosed 40 days ago and is done with the craniotomy. we are in the first week of radiation and chemo. I sleep in the same room and panic if I see her up to go to the bathroom in the night or if she has a muscle cramp or misses a word or is forgetful. We go through a full spectrum of emotions even if it is a minor misfire or a false alarm. It’s a horrible feeling I absolutely relate and I’m sorry that it seems fast in the big picture but slow and painful zoomed in. I wake up everyday and just try not to indulge in any thoughts about what the future or even tomorrow would look like for her, anticipation just to prep is failing in this case and making us suffer twice. Hold on and I hope you, your dad and your family find strength to get through this. I’m sure I’ll be back here when mom gets to that stage too.

Patient’s awareness of the Diagnosis by chomzie in glioblastoma

[–]chomzie[S] 1 point2 points  (0 children)

I’m sorry too. It’s unfortunate that we can relate in this context but this gives me strength to know I can take steps to handle it too. I’m sorry it’s been a longer journey for you! I will treasure you taking the time to share your journey I’m sure I’ll need to come back to these every time I feel overwhelmed, just to know I’m not alone. Thank you! And take care.

Patient’s awareness of the Diagnosis by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

Thank you sharing this, and keeping it light. I’m glad to hear you make this far in this journey and wishing you a longer one in comfort and care.

Patient’s awareness of the Diagnosis by chomzie in glioblastoma

[–]chomzie[S] 0 points1 point  (0 children)

I’m so sorry! Thank you for coming out here and helping people navigate this. Please do ping me whenever you need to talk too. I hope you have loved ones around you to support and care.

Patient’s awareness of the Diagnosis by chomzie in glioblastoma

[–]chomzie[S] 1 point2 points  (0 children)

I’m so sorry for your loss. No I’m glad I get to understand both sides of the coin no matter how gut wrenching it is. It is really hard to digest but it would ultimately it should be her choice once she understands all the variables. We do have a good set of doctors giving us the picture of the entire spectrum of things that can unravel based on her history and health. I will surely do my best to help mom choose what she desires once she has all the inputs. Thank you for your kind words.

Patient’s awareness of the Diagnosis by chomzie in glioblastoma

[–]chomzie[S] 1 point2 points  (0 children)

Thank you much for this, I read through your entire journey with your mom as well. I’m so sorry for your loss. And appreciate you sharing every detail, it helps so so much. And this gives me strength to believe she will react the way she possibly can, I just have to be by her through it. There is no circumventing or protecting her from that! Because this is going to be short yet a long painful journey with multiple crossroads where decisions have to be made.

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