Low Grade Glioma: Any help or advice is appreciated.

Hello @gilliland1102 I am Scott and I was my wife's caregiver during her 14+ year war with brain cancer. I am sorry to read about your boyfriend's health troubles. My wife's brain tumor showed up unannounced. Soon she was plagued by auditory, visual, and olfactory hallucinations. She got her first diagnosis at one hospital, didn't care for the neuro doc's style, and went for her second opinion at Mayo.

After her resection (she stayed with her docs at Mayo), she too suffered from seizures until we were able to get the right medication and its dosage for her. We did have to adjust this over time as her condition changed.

Her condition was a constant rollercoaster. Ups, downs, and changes galore. It was not a smooth curve of progression.

I know every patient, their disease, journey, and caregiving are different, but I am very willing to help with any experiences I can share and what we learned and had to deal with.

Please feel free to ask me anything that's on your mind.

Strength, Courage, & Peace

It’s just so hard bc every dynamic of our relationship has changed. Somedays he’s grouchy, others fatigued, some he doesn’t have much to say, some he’s sad, some he wants to watch cartoons. I don’t know how to deal with any of this.

HI again, @gilliland1102 I, too, had no idea of the immense stress of caregiving until I was thrust into it.

I grew up in an alcoholic family and not until my later adult years did my dad ever agree to treatment. When he did, I participated in all the family therapy sessions (all three times he tried treatment). Personally, I came out of all of that an aficionado of the 12 Steps and the mantra of "one day at a time". My belief in taking caregiving one day at a time was my saving grace. I had no idea how long I could be my wife's caregiver, but each morning I'd say to myself -- today is only one day, and I can do one day. This belief also helped me accept that my wife was very likely going to basically be a different person each day, but that person might only last one day.

A long-time friend of mine sent me a quote early on in my caregiving lifetime. It is "Courage does not always roar. Sometimes courage is simply the quiet voice at the end of the day whispering 'I will try again tomorrow'".

Strength, Courage, & Peace

I’m so sorry to hear what you all are going through. My husband had four seizures last Halloween and we have been fighting the battle ever since. He was admitted to the hospital closest to where he had his seizures but then we sought treatment elsewhere in the city and have gone on to get two more opinions - I don’t think it’s ever a bad idea to have multiple people looking at what’s happening. The first hospital said it was a low grade benign tumor and they were completely wrong so I’m glad we kept asking because they didn’t even want to remove it. This is a roller coaster ride of emotions and you never know when you will have ups and downs. I’m sorry you have to go through this but know you are not alone 💗🙏🏼

Hello,

I just read this. Honestly I just found this website. Or, maybe I saw it before but I forgot. That happens to me sometimes. The Mayo just sent me a packet yesterday, and it mentioned this website. Honestly they probably sent it to me before, but again I sometimes ( more than sometimes honestly) I forget things. So I hope you see this because this was in November.

I had a seizure May of 2020. While I was in the hospital they found a tumor. I have Glioma, 4. It's on my left brain. The surgery took out 90% of it, or may 95. I would have to look again. I also had radiation and chemo after. Right now it hasn't grown, but someday it probably will. I also have aphasia, which started after the seizure. I can read almost anything (like before), but it is very slow and I have to sometimes need to read it several times. Writing is hard and I make a lot of mistakes, even after I have re-read and correct it. In a noisy place I have a hard time understanding what people are speaking. When I listen to TV I use the CC to help me. And my speech is messed up. Sometimes it is better, sometimes it is worst. Depends on the time and the day. My speech may be the worst for me.

I have not had a seizure since I had the first, or maybe I have but didn't know, but I do not think so. I take med for it, 2 times a day. I see a doctor at the Mayo. He knows all about my problems with my communication, and I have had therapy for it. I believe it will never get better, some day it will probably get worse, and they have pretty much told me that.

I feel for you. I know how you feel because my wife has to put up with me!!!!

I love her, and she loves me. But sometimes it is very hard for her because sometimes I am "all the above", what you said about your boyfriend. And it hurts me to make it hard for her, even though I very hard not too. Honestly the cancer doesn't bother me that much. You have to die sometime. It is what it is. But what bothers me the most is my communication. It frustrates me more than I can say. I feel like I am only half I was before. When I cant use a word, even though it is in my head, it wont come out my mouth. Sometime it really makes me mad, and mad gets out my mouth. I have learned how, mostly, to work with my disability. Example; I write notes to me every day about this, that, and the other thing. Most the time it works, but honestly sometimes it doesn't work. I still forget.

I care more about my wife than anything. But sometimes I just hurt her, or piss her off, or make her sad. But I don't try to feel her that way, I try the opposite. All I can do is keep trying, and hope that she will always love me.

I hope this helps a little.

As always pick a winning team, Mayo's, MD Anderson, orother Acedemic medical center and work with those with the most experience.

We are buying time with most treatments. Keep looking for clinical trials.