DH Newly Diagnosed

twoboys

Hello. My dh was recently diagnosed with gr4 glioblastoma (primary, 6 lesions scattered around his brain). He will begin radiation tomorrow, but high liver counts preclude him from starting Temodar as scheduled. We are hopeful, but realistic, about his prognosis. That's not my issue at the moment, though.

The portions of his brain that are affected include his impulse controls and his inhibitions, so I can now count on him to say what he means, no matter what. Normally, I'd think this is a good thing. Today we were talking about an upcoming school event this coming Thursday night, his fourth day of radiation. He said he didn't plan to go, because he'd be tired. I encouraged him not to rule it out (I may have been a bit naggy, but I tried not to be), to which he responded, loudly, that he didn't plan to go because he didn't give a damn.

A few minutes later, he had calmed down, and agreed to go (although promising not to have fun) -- and apologized for not giving a damn. (He did not, as I had hoped he would, apologize for SAYING he did not give a damn, because he really just plain doesn't, I guess.)

My question is this: as a caregiver, how do I brace myself and my sons for the hurtful things he is going to say in the future? I can tell the boys (10 & 11) that he doesn't really mean what he says; however, I know that he in fact absolutely means every word of it. He says out loud all those comments that spouses think about but never say because they'd be too hurtful.

Rereading this post, I realize I sound utterly self-absorbed, and I don't mean to. I appreciate, as best I can, how very frightened he is; how much he doesn't want to leave us prematurely, but it is almost inevitable that he will, given his prognosis; and that he feels utterly powerless this early in our very difficult journey.

Any advice for this newcomer? Thanks in advance.

jagged

Treatment
twoboys,

After one or two treatments, the radiation should help with your husbands symptoms. This should take care of his immediate impulse controls.

I just had radiation to the brain and stopped the treatment short. I whined and hurt and was tired. I normally just roll with the punches. It was mainly the steroid they put me on, but the radiation too. This is just not enjoyable treatment. I wanted to die to get it over. I am female and my hair will never grow back as a result, and yes, I reallly really did not give a damn.

I do not know your husband's normal temperment, I do not have kids, but here are some suggestions during this time.

First, take care of yourself and your needs. Get grief counselling, get babysitters, go to a spa, get a house cleaner, start spending your inheritance.

Please, please do not present a sugarcoated pollianna front. This treatment is not fun, and that is what it is.

Discuss bad day options with your husband. The steroids can change your personality. Your husband can buffer some of this, and sounds like when he can, he will. But, have a game plan so there are no hard feelings. On bad days, it may just help everyone to get out and away from your husband. Go to a movie.

Your kids are old enough to understand a large part of what is going on. I would suggest the more they know, the better. It helps them to understand that, yes, while your husband at the time does in fact mean what he said, what he said and how he feels are affected by his treatment. Hopefully, the kids can learn not to personalize the hurt directed to them.

If you see despair in his face, just try holding him. No words are required, and crying with him is ok. It is tragic for everyone involved.

Find something you can work on as a family that is low-key. A puzzle or game. TV. My husband and I bird watch.

Hope this helps.

--jag

ChristyM

When I was going through my
When I was going through my radiation and initial temodar session, I did have a very bad and directed negative and rude attitude with my sister. For some reason, she was the only one who I was upset with and was brutely honest with. As time went on with my treatments, it did pass. I also started to realize that I was doing it, and encouraged my husband and whoever else was around me to tell me when I was doing it. That is the tricky thing with the brain, I never realized what I was doing until I had already done it.
Things will get better, tell him to keep a positive attitude. He and yourself should surround yourselves with positive attitudes and keeping life as normal as possible (that is my opinion of course!). That combined with a good support group is the best. It is weird that you really dont realize how good it is to feel normal.
Check out the National Brain Tumor Foundation--there are a lot of good people on that site and message boards that will be able to help you both. Fact is, I have not been to a "live" support group until this last month, but have been doing great (I was diagnosed in May) thanks to the NBTF website. Keeping around the positive and determined attitudes helps a lot. I would reccommend staying away from those who make you feel that things are negative.

narthur

i had a tumor around the
i had a tumor around the frontal lobe of my brain. after surgery and during the radiation, i noticed that i had out burst, after saying them, i knew it was wrong and aplogized. i asked the dr. about it, he said that the part of my brain that was irritated by the surgery and radiation made me not have a filter. and being tired doesn't help matters...don't worry, it gets better!! i surround myself with people that are layed back and relaxed. Hyper people wore me out. i was very fustrated at the begining because a lot is going on and youre not in control of it. i wish the best of luck to you. stay positive! make every obstacle an opportunity!