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My guy has Glioblastoma: how to help fulfill his legacy?
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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Ben, perhaps it is providential that you are together. This is a hard road.
There is an astonishing immunotherapy clinical trial going on at Mass General in Boston. Probably impossible to get in due to tiny numbers, but…. Read about it in The New Yorker, June 2024, by Christopher Cox, Health section.
Does he have a medical directive in place? This is critical.
Best wishes! ♥️
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3 ReactionsBen,
So sorry to hear this. My sister was diagnosed with a GB in Jan. of this year. Had surgery to remove tumor, and after her last MRI it has grown back. We went to Northwestern Brain Institute yesterday. They have a clinical trial going on now that she will be entering soon. Go to their website and search for ongoing clinical trials. Also, the American Cancer Society has a wealth of info. You can get on a chat line with them. They have info on trials all over and can tell you if they are recruiting for them. My best to you.
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4 Reactions@heal52, I'm sorry to hear that your sister's tumor has grown back. What treatment option is being offered in the clinical trial?
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1 Reaction@breathesand, Ben, welcome. I hope you saw the helpful posts from @ruthannray and @heal52 regarding clinical trials.
What a thrill to meet your life partner. And such a gut punch to receive this diagnosis. I'm glad that you chose to post here to get support and ideas. Your life has been turned upside down and, as you said, you're living and breathing your partner's cancer day-in and day-out. You need a place to get support as you support and love him.
To your question about helping him fulfill his legacy while cognitive abilities are still available. Having him write a letter to you is a wonderful idea for you to have something to hold on to. Your time together has been short. Is it possible to make some memories together, even some rituals and habits to cherish?
Ben, what treatment options have been discussed? Does your partner have serious symptoms at the moment that affect cognition and/or mobility?
Clinical trial # NCT 04528680. Sister is having her 2nd surgery on Aug. 1 at Northwestern in Chicago. Her oncologist from Switzerland and her surgeon are heading up this trial and we are praying for good results. So many trials going on.
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2 ReactionsMy 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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6 Reactions@heal52, how did your sister’s surgery go?
She was in surgery for about 7 hrs. and had the sonocloud inserted. This surgery was extremely hard on her. She is very tired after her first treatment last week. This chemo has a much different effect on her than the TMZ she was on after her 1st surgery. Research team members have been so caring at Northwestern.
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1 ReactionI just saw this piece about a new medication recently approved. I have no idea if it’s applicable in your loved one’s condition, but wanted to post.
https://www.axios.com/local/raleigh/2024/08/09/duke-brain-cancer-research-voranigo-drug-fda-approval
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3 ReactionsHello…curious to know how your husband is doing 16 plus months after surgery😊