My dad has been diagnosed with stage 4 glioblastoma inoperable

Prayers and prayer chain with group prayer 🙏 anywhere and everywhere you
can get a chain started, im sending a prayer for you and you're dad
now--------sent and have a blessed evening 🙏

Hello, @justineb I'm Scott, and I was my wife's caregiver during her war with brain cancer. She, too, had no medical interventions given the location of her tumor. That said, there were other things she and I did that helped her, our family, friends, and me.

We immediately made certain our legal and financial affairs were in order. We updated our wills, got POAs for legal, real estate, and medical decisions. She also signed a HIPAA approval for her doctors to speak directly to our adult children and me. After discussions, she decided her mantra and decisions were going to always be driven by 'quality of life rather than quantity'. She asked two people to visit her, with whom she felt she needed to make amends. She gave some of her special things to certain people since she wanted to tell them herself why they were important to her and why she wanted that person to have a specific item. She made decisions on her final wishes and even planned her Celebration of Life.

All these decisions helped her find some peace, filled some of her time and thoughts, and helped all of us later on.

Strength, Courage, & Peace

My husband had stage 4 inoperable glioblastoma also. He did receive treatment in the form of radiation and chemotherapy. His tumor responded very well to treatment, however his quality of life deteriorated rapidly because his very mild dementia erupted into full on dementia. These were treatment side effects we did not anticipate, but they are common.

Truly he was sort of ok with all of that because his awareness was so low. He felt cared for by all the treatments and attention. He never had physical pain and the severe dementia meant he forgot he was dying. Caring for him became more and more difficult as his awareness and ability to cooperate diminished.

It’s a hard road and your wife made what I consider to be the better decision, but my husband deserved to make his own decision and I honored his wishes. He lived 19 months after diagnosis.

May your wife have good time with her loved ones on the final part of her journey.

@justineb, I thought I would check in. It is hard to accept such a diagnosis of a loved one. Has your dad's care team talked about palliative or comfort care for him and your family? How are you doing?

This is one of the fastest growing tumors.our daughter had surgery to get what they could.but it grew back quickly.spend time and talk to each other.share that both of you are scared.

Just saying it like it is , my angel richard said prayer groups, prayer
chains and believe in your faiths. sending a prayer for you and the
family now=========== sent and may my Blessings be in your day.

@malliedog, so important to make the most of the time we have when diagnosed with a serious illness. You're so right that it helps to share how scared you are. So often family members hide their fear, thinking they need to be strong for the other. Talking about the fears kicks that elephant out of the room.

Do you have any tips about how to start the conversation of speaking the unspeakable?

Justin,
I’m so sorry to hear about your dad. I presume since it’s not operable, it is in a sensitive area. If it were operated on, my guess is he wouldn’t be the same person Either with memory, cognition, or physical abilities.My husband (54) was diagnosed with glioblastoma in September. He had no previous health issues. September 10 he had a seizure and that is how it was found. My son, too, is struggling because they are very, very close. Ask your dad as many things as you can. Spend as much time with him as you are able to. Let him know how important he is to you and what influence he has had in your life. Go on vacation or take a trip. If he is not able to go far, consider a day trip together if you’re able to. My husband‘s tumor was operable. Was your dad able to do chemotherapy? When we were up there for radiation, we met a man who had Glioblastoma in his thalamus. It was inoperable. He did chemotherapy and Optune. It made it dormant for 3 1/2 years, but when it came back, it reappeared in his right temporal lobe, where he was able to have surgery. At that time he found out he had the methylated type. That is probably why the chemotherapy helped. If your dad was not able to have surgery, he likely does not know if he has the methylated type or not. But hold out hope, because this gentleman had it go dormant for 3 1/2 years despite not having surgery. So many prayers are being sent your way!

In December, my husband was diagnosed with a butterfly frontal Glioblastoma following a seizure while driving. In ER, we were told there was nothing that could be done. An oncologist recommended mapped mild radiation that would improve cognition but would be palliative. Agreed to it but it really made no difference. After 20 days in the hospital, he was then transferred to Rehab with stage four pressure wound bone on bone. In Rehab for 20 days, unable to walk and rarely speaks. Now, for the past 19 days, we're in skilled nursing/hospice. I visit every day, feeding him breakfast and lunch. It's emotionally overwhelming and so hard.

My heart felt sadness. I too went through the feelings of being overwhelmed. Yet, I encourage you to find little moments of joy in the interactions that you do have with your husband. Moments of still loving him and being loved. Louis Garcia