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Inoperable Meningioma: not feeling support by my partner
Hey all. I read all of your stories yesterday afternoon. It struck me how strong we all are, dealing with this scary thing! That said, not feeling it this morning. Halfway through 28 fractionated treatments, actually going for #15 today. Very tired, started having some radiation burning last week that affects my tounge and throat. Nothing tastes like much either. I know this will pass. Currently the worst thing is lack of support from my husband...he actually started a fight with me about how long it takes me to get back and forth to treatments, and where am I am going? What am I doing? Holy f*CK, man. Close to an hour drive each way, through a college town that is a bottleneck with traffic. After tx I get some lunch, stop by grocery store, get gas, go the drugstore, whatever. Typical errands. So it puts me out of the house for a few hours in the afternoons. He keeps asking me where I go and what I do...despite me telling him. Even showing receipts, which is ridiculous but thought it might help with whatever weird ideas he has. He got even madder and has been being an absolute cold jerk the last few days. I asked him if he was worried about me getting him from treatment, safety concern? Was hoping that's where it came from but he denied this. So besides the worries about future of my brain and dealing with side effects from the steroids, tx, he appears to have made up his mind that I'm doing something nefarious. All I'm doing is getting through the day best I can. He's very demeaning, insulting to the point where it feels my very existence is not ok. Anyway, ack. Just feeling very stressed and sad the past few days. Thanks for reading.
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@dollyjaneprenzel thank you for the birthday wish, and end of day it was a good day. much appreciated.
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1 Reactionhey kiddo are you still having issues?
Hey folks-
Sorry I haven't replied to all of you. I found that having to log in to this forum every single time is a pain in the butt. Finished the last of 28 treatments right before Thanksgiving. Lost my sense of taste,have radation burns in my mouth, very fatigued. Husband is being better, he did finally share he was worried, which contributed to his a hole behavior. I thought it may be, asked him outright and he denied it. IDK why that was so hard for him to admit."Manly man" stuff I suppose. Anyway, appreciate all the replies. Thank you.
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2 ReactionsI posted an update, not sure where it went! Maybe linked to other peoples comments, IDK.
Hi Carolyn, my name is Mark. In looking up Meningioma I saw many things in common w my Astrosytoma brain surgery I had a long time ago (removal of a benign tumor in my cerebellum) like, “slow-growing benign tumor, dementia, trouble talking, vision problems, one-sided weakness, loss of bladder control,” and of course feeling tired and being slow!
Maybe your husband is starting to understand that feeling tired and slow is a universal result of any brain injury, be it strokes, tumors, surgery, and your radiation. If he can get on board in supporting you, wonderful! But not having the support that you need…dealing with a brain injury is a major change for everyone involved and sometimes people either can’t handle it or they don’t understand, or worse, they don’t want to understand. I don’t have to tell you that dealing with a brain injury is incredibly hard enough by itself, but without the needed compassionate support that would be almost unimaginable to me! You don’t need that kind of controlling behavior. And what is “nefarious,” dark & ugly is dealing with a brain injury! If it’s okay, I’d like to say a prayer on your behalf. God bless you in this difficult journey you’ve landed in.
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3 Reactions@randallshields56
Happy Birthday! Today is Friday.
@jimw9
When I had my emergency brain surgery at a Catholic hospital (OSF), my very compassionate wife would wheel me down to its chapel. It was so peaceful and magical in a noisy hospital. I’ll never forget that!
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2 Reactionsthank you for the Birthday wish
@randallshields56
Hi Randall .. happy belated birthday. How are you doing? Hope you are doing better. How long has it been? It must be awful being widowed and going through this. I, too, am widowed and just been diagnosed with 1.8 cm, left inferior frontal lobe with edema. 2 Neurosurgeons suggesting craniology due to the edema. Stanford neurosurgeon said it’s small but have asoc/edema and get occasional mild headaches. There is calcification which tells them it’s been there for a while. She said there’s a 50/50 chance it will grow. When I asked what she would do if she were me, she said she would wait 4 months and do another MRI.. Do I wait and chance getting more neurological symptoms, such as seizures and grow larger, or do craniotomy surgery with all the risks? I’m 72 yo. My sons want me to wait. Do I want to walk around with a tumor and swelling taking up real estate in my brain or do surgery and spend the rest of my life healing?
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1 Reaction@as72 know that i appreciate the birthday wish and asking what i would do. Lots to think about but i will give you my opinions- 1st- id do the 4 months and go for the odds, as to seizures depends what kind and can they be controlled, I got bumped up om my Keppra .25 and its been working at keeping them at bay. 2nd its the holidays and i for one would not want to spend them in the hospital , i might request 3 months not 4 and let the family know my reasoning. Lastly life is just too short to not want to enjoy every moment feeling alive. I have sent a prayer to be able to find true love again and want to live another 30 years and some. as to heal time on me its been two years and i am actually fairly happy. just little things now but i am enjoying family. feel free to call me anytime or message me with questions. Thank you, Randy
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