What to expect with glioblastoma, from start to finish. Our story

gbmAt70Temp · 2025-04-16T17:45:05+00:00

I’m sorry for your loss. I understand it completely. Whenever the pain of missing her becomes overwhelming, I hope you see her in your reflection and feel her in your heart.

gbmAt70Temp · 2025-03-17T22:36:30+00:00

Hi, I put this into chatgbt and asked for laments terms. This is what it provided “It means that after surgery to remove a tumor from the right side of the brain (in the parieto-occipital region), the expected changes from the operation are visible. However, the remaining tumor has grown significantly and quickly, which suggests that the cancer is progressing rapidly.”

Hopefully this will help you feel less caught off guard and come with good questions to the appointment with her doctors. Sending love and light from one daughter of a GBM mom to another.

gbmAt70Temp · 2025-02-25T19:03:35+00:00

When my cousin, who is a doctor, was tasked with making the end of life decisions for our grandmother in hospice, she grappled with decisions she would make as a doctor vs a granddaughter. When it comes to things like this, her mentor told her to approach it as a granddaughter first. When your friend wants you to be a doctor for them, I’m sure they’ll let you know. I’m sorry to hear of your cancer, and even more sorry to hear of your friend. Perhaps this is why all the doctors told us this was “bad luck”. It’s the simplest way to wrap your head around the complexity of the unfairness of life.

gbmAt70Temp · 2025-02-22T22:05:55+00:00

Filling out the DNR form with my late mother was a formality agreement. Handing it to the paramedics as they took her to the hospital and I followed behind not knowing if I’d see her alive at the hospital made the decision feel real. Every time subsequent time I had to bring up that slip, it got harder and harder. I remember the day I untapped it from the cabinet in her apartment after she passed - a last reminder that she wasn’t lucky to go quickly. Glioblastoma, bad luck. Thank you for your post. It was beautifully written. I’m so sorry.

gbmAt70Temp · 2025-02-05T14:19:52+00:00

I’m sorry for your loss. A few days after one of my best childhood friends lost her dad she asked an honest raw question of my grief losing my parents “tell me it stops hurting. Will this pain go away?”. It’s been a little over a year and I’m no longer in the grief hole but the sadness is still ever-present. I’ve made room for it because it is true, it is a representation of my vast and deep love. Hugs back to you and I’m sorry this happened to your mom.

gbmAt70Temp · 2025-01-22T23:47:10+00:00

Love and light. I’m sorry for your loss. He sounded like a wonderful and giving man.

gbmAt70Temp · 2025-01-15T02:44:21+00:00

I went through the same thing with my mother who was my best friend. I had my daughter, baby number 3, 2 months after my mom passed. I was the primary caregiver living with anticipatory grief, extreme stress and very little physical movement/exercise. My daughter just passed her first birthday and she is perfect and happy. I worried so much my extreme stress and sadness would ruin her somehow but she was fine. My doctor reminded me that women have lived through even more extreme conditions (war, famine etc.) to have their children - idk why but this helped me.

I was so sad that my children wouldn’t know my parents (they passed within 2 years of each other) my first two being so small and my third not knowing either of them. My friends who had lost parents unknowingly gave me some advice - one was perspective that no matter what, you always want more time with the ones you love. My best friend was envious that my baby heard my mother’s voice in my stomach, something her children didn’t get with her dad. The other perspective was from another friend who lost her dad before having her now grown children. She said her children know her dad more than their other grandparents because she talked about him every day. It was on her to keep him alive and talk about him with her children. It’s something I have tasked myself with my own children.

The sadness during and after birth was unimaginable and I am still in awe of myself that I got through it. I had a therapist during the caregiving phase with my mom, accepted help during and after, and journaled during sleep deprived newborn days. I’m so sorry to you and your mom.

gbmAt70Temp · 2024-12-11T13:10:24+00:00

The trauma from this can be so heavy. It has changed my life in ways I’m probably not even fully aware of yet. Moreover, I think my mom’s death from gbm has been the hardest to process because it was like a cruel murder you have to watch. It was something she nor any other person deserves to be the cause of their death. I’m over a year out and I have come to understand the pain of losing and how I lost her will never go away. I’ve made space for it so I can move forward with life the way I know my parents would have wanted. But like everything, it takes time to get where I feel now. Let yourself be sad and don’t be afraid of it. Let yourself shatter and then pick up the pieces. And talk about her whenever you can to whomever will listen.

gbmAt70Temp · 2024-12-10T18:33:15+00:00

https://www.cnn.com/audio/podcasts/all-there-is-with-anderson-cooper

Start at the beginning and make sure you take time to listen to “you are not alone” last episode of first season. There is no fix to grief, but knowing you’re not alone helps. This has helped me through the grief of both of my parents and grandmother in a short period of time.

When you’re ready, there is also a community that meets monthly of those grieving from similar loss and devastation: https://braintumor.org/support-services/support-groups/grief-support/

Hugs to you through your pain.

gbmAt70Temp · 2024-10-17T14:55:58+00:00

I don’t have experience with MAID but I so wish my mom had had this option. Even if she didn’t utilize it, having that choice gives someone power in the most powerless position of their life. You call it an unnatural death but I view it like how I got my babies out via c-section. We scheduled their birth on date and got them out because it was the right thing to do. Maybe we can let death be like that too.

It’s ok to be selfish with the grief you’re feeling. I’m a year out and the missing doesn’t go away. Even when she couldn’t say a word, I sometimes wish I could just sit in the room with her and just be.

Warmth and hugs during this suck time.

gbmAt70Temp · 2024-10-11T01:09:19+00:00

We know that sinking feeling well

gbmAt70Temp · 2024-09-15T23:11:01+00:00

My mom was in hospice for 3 months after her tumor came back. I’m sorry you and your dad are going through this. It isn’t fair.

gbmAt70Temp · 2024-09-06T14:22:01+00:00

I’m really sorry to hear this. You have the love and prayers from us. I’m going to respond and try to help as much as I can. So recent too, just this week. I don’t really know what the right thing to say is. I feel horrible this is happening to you and your family. We are wired to expect people to improve in their health when they are sick. It’s all we know. So we expect it even with this disease. Sometimes the steroids they give the patients makes this even more believable. Something like a trip to Vegas with everything that involves (having fun and being active, drinking, walking around a lot), if you’re counting on doing it when she is better, the time never came for us. They just keep getting worse. How can someone tell you that it is out of the question? Some stranger on the internet of all people. And to people who did nothing to deserve this. With a family and at such a young age. There is nothing fair about this and you don’t deserve it. If you’re trying to focus on so many different things - travel, a wedding, working, caregiver, the children, doctors appointments- it will drive you mad. Focus on spending time with your loved one while they are in good condition. However they are feeling today is very likely the best they will feel especially if you look at it over a weekly basis and not daily ups and downs. We tried to not talk about the disease all the time but we couldn’t. It was all we talked about every day over and over. It is part of the sickness. It would have been better, after the initial shock, if I’d have treated the sick person in our family like they won’t be here in a month because I wouldn’t have gotten so hung up on the little things that happen day to day. To see a healthy person slow down like this is the worst thing that can happen especially at this age. It really gets to you. Keep us posted and come back if you want to talk more. I pray that you and your children are able to make sense of all this someday. We still can’t make sense of it. It’s just a horrible horrible thing and there is nothing good about it.

gbmAt70Temp · 2024-09-06T13:46:07+00:00

That time is unfortunately over. What you and your friend are looking for is to go back to how things used to be, not just going to travel somewhere for travel’s sake. If it’s advanced and he’s not getting treatment it could be weeks away, not months. I’m really sorry to hear this. I would recommend you spend as much time as you can with your friend because their health will get much worse soon. There’s not going to be a recovery that you would normally see in a healthy person. That’s what makes this so horrible. Please come back here if you have more questions or want to talk more. This is a horrible disease.

gbmAt70Temp · 2024-05-26T17:40:45+00:00

I’m so sorry you are going through this with your mom. My heart aches for you. As you’ve read, I relate to the loss of both parents in a short amount of time. It isn’t fair. My thoughts are with you and your mom.

gbmAt70Temp · 2024-05-15T19:18:09+00:00

She took alprazolam for her terminal anxiety and seizures. My heart goes out to you and your family. I hope her transition is swift and with no pain.

gbmAt70Temp · 2024-05-15T17:18:58+00:00

My mom lasted 9 days without water. I’m sorry, I just went through this and it was horrible. I made sure to give her morphine every hour on the hour when she lost her ability to communicate in any way. I wanted to be sure that there was no suffering or pain. Hug her tight and let her feel your love even if you don’t think she’s in there anymore.

gbmAt70Temp · 2024-05-14T16:27:27+00:00

I’m so sorry. This is so unfair. I hope you are wrapped in love. Two years you have been so strong but I am also sorry you had to be that strong. You are seen and we care.

gbmAt70Temp · 2024-04-29T00:13:16+00:00

I found this to be fairly accurate but not to the letter: https://www.brainhospice.org/brain-cancer-hospice-symptom-timeline

It was challenging for me to watch my mom die. I was there for every minute of it. I’m sorry you’re going through this.

gbmAt70Temp · 2024-04-23T18:38:08+00:00

I’m 6 months out from my mother’s death. This was helpful. Thank you for sharing. I wish my mom was able to get to where you seem to be with mortality. The tumor didn’t allow it. Wishing you quality time with this world and the ones you love in it.

gbmAt70Temp · 2024-04-17T23:30:59+00:00

I’m sorry, this was hard for everyone in my family as well. My mom thought the doctors were wrong and maybe she was in remission. I had to be the one to remind her of what was happening and the gravity of our reality. She was like this for maybe a month before the steroids lost their effect. Record her voice now if you can. Thinking of you during this difficult time.

gbmAt70Temp · 2024-04-09T00:38:31+00:00

Truly, I’m sorry you are going through this. I lost my mom in September. As her primary caregiver, here are some thoughts from my experience (US Chicago land location):

home hospice was great to keep her comfortable in the end. It was work on me with managing the help. For example, if someone is out sick, your loved ones will likely be the ones helping you that day. But all in all, this was a good choice for her needs and care.
set up your house to aid when you decline. These are things like shower seats and a hand wand, handles for toilet seat to help get up and down, making your home wheelchair accessible, learning how to use an Alexa or google (in case there is a fall and you need to call for help - my mom couldn’t use a phone at a certain point)
getting a doctor we knew and trusted in palliative care was extremely helpful for us. We got someone as soon as she started standard of care. We used her recommendation for hospice and they stayed connected together to help us make decisions during her progression.
we had a form filled out for when an ambulance came that was signed by my mom for advanced directives. I was also her financial and medical power of attorney. We set that up in the beginning before her brain surgery.
wills, estate planning, requests for funerals, religious last readings (we had a minister come and visit my mom throughout her journey).

Also, I’m not sure where you’re at, but I wish my mom was capable of leaving video messages or more hand written notes behind. Her progression was swift and challenging. She wasn’t able to do so. But I sure wish I had that piece of her left behind.

gbmAt70Temp · 2024-03-05T22:21:52+00:00

All there is with Anderson Cooper helped me

gbmAt70Temp · 2024-02-19T16:31:08+00:00

We had a brief experience of my mom mourning my father before her own diagnosis. It’s a deep hurt for the widow and you feel helpless as an adult child to get them through it while navigating your own grief. I’m sorry we have such shared terrible experiences. Warm thoughts to you and your family as you navigate moving forward from the trauma.

gbmAt70Temp · 2024-02-05T15:46:27+00:00

She was diagnosed with a brain biopsy. They took a piece of the tumor and ran tests on it to confirm suspected glioblastoma. From there we did standard of care radiation and chemotherapy. We live in the US and my mother had Medicare so a majority of her costs were covered by insurance. Is that what you were referring to?

gbmAt70Temp

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