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My guy has Glioblastoma: how to help fulfill his legacy?

Posted by breathesand @breathesand, Jul 20 2:32am

My guy has a glioblastoma. We are five weeks into the beginning of this information, and we met exactly 10 months ago, and I knew he was the guy I wanted to spend my life with. We were planning a future together, even though I am loud and brash and disorganized and creative and he is thoughtful and well-put-together and introverted and a mental-health advocate and amazing and so smart, and I am so proud of him. I am so sad. I am so sorry others of you are experiencing this too. There is nothing I can do or say, I am living and breathing my guy’s cancer. I don’t know why I am posting here but that I need feedback and support. I am receptive to a lot of conversation, and none of it is gonna fix my guy. I am in a spiral.

What I need most is feedback on how I can help him fulfill his legacy while he is able, and also how I can be the best support to him. Especially when his cognition is a challenge. We are too new in our relationship for this to be happening, I also need a lot of support and feedback about how to receive things during that era, and a very important thing is I need to know what I need to receive now so that I can continue to be strong for him then. My gut has said and told him that I need a letter or an artifact to hold on to close to my heart so that I can keep being strong. Really a letter.

A good friend of mine has gone through this with her late husband, another good friend of mine, and gave me good insights: first off, if you commit, you commit - I have made my decision. I love my guy. Second; you may never get what you need from them again. I am aware of that (though I feel lucky that he has been so loving to me in the past weeks). 3rd, and this is hard: I may need to manage this all. This one is so tough. Can I just have love from my guy and know he loves me?

Yours, Ben

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bigphyl | @bigphyl | Sep 1 12:39pm

I have just been diagnosed with a large glioblastoma that is also in two other places in my brain. Doctor wants to do a brain biopsy and consider else that have a 2% chance of working. I am 82 and have decided to go straight to hospice for four months more of life rather than 15 months with lots of painful intervention. I wonder if anyone else has struggled with this decision. My children live nearby and completely support this.

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2 replies
heal52 | @heal52 | Sep 2 9:55am
In reply to @marybeths "My husband had surgery to remove part of the glioma (glioblastoma-stage 4) April 2023. It is..." + (show)
@marybeths

My husband had surgery to remove part of the glioma (glioblastoma-stage 4) April 2023. It is not an easy task watching someone you love deteriorate. You will find you have many questions concerns and you will feel at times that you are in it all alone. You will find yourself wanting answers- why?
I hope you can find friendship in others who care you and your love. I think writing here helps me. I hope it can help you.
I have strength from the Lord my God, who made Heaven and Earth.
I wish the same for you! Sincerely, Mary Beth

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Marybeth, Yes it so very hard to see our dear ones with this suffering they are going through. Keep your faith-that is what helps us the most. I pray for all the people with so many illnesses and diseases.

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tomla | @tomla | Sep 3 4:02pm
In reply to @bigphyl "I have just been diagnosed with a large glioblastoma that is also in two other places..." + (show)
@bigphyl

I have just been diagnosed with a large glioblastoma that is also in two other places in my brain. Doctor wants to do a brain biopsy and consider else that have a 2% chance of working. I am 82 and have decided to go straight to hospice for four months more of life rather than 15 months with lots of painful intervention. I wonder if anyone else has struggled with this decision. My children live nearby and completely support this.

Jump to this post

i have the glioblastoma tumor on 7-25-24 had the biopsy which measured 2.8 cm
and started 15 days of radiation and 21 days of chemo capsules 150mg two weeks later the tomor is now 3.4 cm and feelin okay but the tumor is near the nerve that effects my left side mostly my leg so now taking a steroid to reduce swelling from the tumor. i use a walker around the house to keep stable a nd will be starting another round of chemo 300mg for five days and off for 23 for 12 cycles.
There are people who can live longer up to 10 years but that is 10% and some have pasted that i"m going to fight this to the end because i have much to do and when i"m working around the house i feel good and don"t think about the dam tumor by the way i"m 76 and have faith so i hope you make the right decision , Tom

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1 reply
catv7 | @catv7 | Sep 4 4:40am
In reply to @tomla "i have the glioblastoma tumor on 7-25-24 had the biopsy which measured 2.8 cm and started..." + (show)
@tomla

i have the glioblastoma tumor on 7-25-24 had the biopsy which measured 2.8 cm
and started 15 days of radiation and 21 days of chemo capsules 150mg two weeks later the tomor is now 3.4 cm and feelin okay but the tumor is near the nerve that effects my left side mostly my leg so now taking a steroid to reduce swelling from the tumor. i use a walker around the house to keep stable a nd will be starting another round of chemo 300mg for five days and off for 23 for 12 cycles.
There are people who can live longer up to 10 years but that is 10% and some have pasted that i"m going to fight this to the end because i have much to do and when i"m working around the house i feel good and don"t think about the dam tumor by the way i"m 76 and have faith so i hope you make the right decision , Tom

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Prayers & blessings to you! 🙏♥️

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 17 4:28pm
In reply to @bigphyl "I have just been diagnosed with a large glioblastoma that is also in two other places..." + (show)
@bigphyl

I have just been diagnosed with a large glioblastoma that is also in two other places in my brain. Doctor wants to do a brain biopsy and consider else that have a 2% chance of working. I am 82 and have decided to go straight to hospice for four months more of life rather than 15 months with lots of painful intervention. I wonder if anyone else has struggled with this decision. My children live nearby and completely support this.

Jump to this post

@bigphyl, did you struggle with this decision? Are you considering a home hospice situation where hospice providers come to your home or a residential hospice setting where you've moved into a hospice care facility? How are you doing?

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1 reply
bigphyl | @bigphyl | Sep 17 9:10pm
In reply to @colleenyoung "@bigphyl, did you struggle with this decision? Are you considering a home hospice situation where hospice..." + (show)
@colleenyoung

@bigphyl, did you struggle with this decision? Are you considering a home hospice situation where hospice providers come to your home or a residential hospice setting where you've moved into a hospice care facility? How are you doing?

Jump to this post

I struggled with the decision but less and less every day. It’s right for me. No pain but my balance is clearly worse every single day. Clearly an aggressive tumor. Tons of medical equipment and fine hospice help.

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marybeths | @marybeths | Sep 30 11:02am

Hello Nancy,
Next week my husband will be 18 months post surgery. He still has decent days occasionally.
He has been having "target infusion" twice a month since May.
Temodar was discontinued in April. Became quite weak on feet early in the summer- uses a walker with a seat.
He was very reluctant to use this, but it has been a great help. I would recommend this brand Aojin. It was on Amazon. Its light and easily folded and thrown in trunk of the car.
Target infusion is not a problem for him generally speaking. He is very tired a lot of the time and confused most of the time.
Wish I could be more helpful to him and our day to day roles are changed dramatically. I am sure it is no fun for him either- major depression. Absolutely no pain physically - mentally we are trying to deal with that.
I am glad we are able to get a marijuana and that does help him 3 or 4 times a week.
I wish you the best and pray for all the families suffering .

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