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DH Newly Diagnosed - Gr4 Glioblastoma

twoboys
Posts: 2
Joined: Sep 2008

I just posted this to the Brain Cancer discussion board, then I found the Caregivers board, and thought it might belong here instead:

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.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am sorry that your family has to go through this. Everyone reacts different when we are told we have cancer. Even if the brain is not involved we sometimes take our pain out on those around us. Its not uncommon for some to push family away and hide in a hole. The closest person around when we get mad at the world is going to get the brunt of our frustration, pain and fear. When you add the brain in with impulse control issues, it gets real bad. And some drugs that don't work well with our brain also cause problems. To assume he is striking out with thoughts or urges he has burried inside is wrong. I never had an urge to grab a hot pan but did it twice in 20 seconds. A friend with brain cancer never thought of taking swings at doctors and nurses. He had to be strapped down for 2 weeks until the drugs started to work. I pulled my wife out of bed at 7 am and told her I wanted a divorce. 5 years later we are still married and have been for 33 years. Our brains will come up with totally stupid thoughts and we cannot stop ourselves from acting on them. And I can say its quite frustrating when we cannot control our own brain. To deal with your kids I would suggest a family therapist. Your husband is going to be tired with radiation to his head. I had 25 shots to my face and I slept a bunch. And I stayed away from groups of people as I didn't want to get a virus and end up in the hospital. None of this is going to be easy and I hope the start of radiation will help with the impulse control issue. I can't take back what I said to people during my cancer. I said I was sorry as I had no control over what I was doing. People that I treated badly are still my friends today as they understood. But its not something I expect anyone to understand unless they have been there themselves. Bless you and your family Slickwilly

cgvr33
Posts: 1
Joined: Sep 2008

Know that you are not alone in this... Even though I know it feels that way -- I have never posted to any type of site before so please bear with me... This time it just felt important... We are almost 4 months into the same fight that you are fighting - My kids are 5 and 6 - Every family is different and I am definately not a child psychologist - I'm learning as I go too, but what has worked for us during similar situations to the one you talked about is that we talk about "Daddy's boo boo" and how if you hurt your knee when your playing, it swells and tells us to stay off of it when it is tired - since Daddy's boo boo cant do that it responds different ways to let us know it is tired and he needs to rest. Sometimes that means that he will be a little grouchy, or zone out or go to sleep at wierd times etc. But he still loves us bunches and bunches, his boo boo is just really tired. We do not discuss prognosis with the kids (I try not to think about it to be perfectly honest) - but we do talk to them about symptoms that they see and what is causing them. We have no immediate family near where we are so the kids have gone with us to radiation / chemo etc appts and after a lot of time in waiting rooms, they asked to see the pictures that were being taken, so after alot of consideration we showed them the MRI -- and let them ask questions. Not the easiest thing to do - but seems to be important to help them process exactly what the "boo boo" is. I do not know how it feels to be the patient, but I do know about the emotional trauma and fear that the spouse feels - I was not prepared for how big it would be at times. You just dont hear about the caregivers much. Hang in there. Remember you cant do it all yourself, especially with kids, take people up on offers to help. (Even if it is just to bring over dog food or pick up milk at the store) and don't feel bad about asking for help - I have learned that people do want to help but lots of times they just dont know what to do or say.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Read both of the previous posts and think they are both great!

I know you are thinking that your boys are older than the ones mentioned in the one post, but I think the same idea applies, even if your language is a bit more mature for them: you need to be sure they are aware, involved, and dealt with honestly. I have kids of my own, and have coached kids of the ages of your boys, and am always astounded by their ability to grasp fundamental facts, to accept and deal with things.

Speaking of honesty, I think SlickWilly explained a lot of what happens with cancer survivors, regardless of the type of cancer. As you and crgver33 know, however, the 'boo boo' happens to be in a place that can alter behavior significantly, even moreso than the diagnosis or even the treatments, which, in this case, will have a decided impact as well.

Normally, I would suggest that some therapy for the two of you would be helpful. In this case, however, I am not sure it would do dad much good. It MIGHT help you, however, to have someone to talk to about what is happening, so please consider that. And I say that while reminding you that a cared-for caregiver is a better caregiver :). You MUST see to your own well-being, whether it involves therapy or manicures, whatever it is that makes you a happier person, a stronger caregiver.

Do NOT get submerged by this!

Finally, let me advise that brain cancer is not a death sentence. My mom ultimately died of brain cancer, so I am not speaking from Wonderland. (I am a survivor of head/neck and lung cancer, myself and have recently been advised that I am cancer-free.) But as someone who spends some time on this site quite a bit, I know of folks who live many years after such a diagnosis, depending on the extent of the damage at diagnosis.

So do not give up hope!

Hope and humor!

Take care,

Joe

Mannie
Posts: 51
Joined: Oct 2008

Living with someone who has a brain tumor is VERY challenging for everyone involved, even the person with the tumor. I don't think you can brace yourself and children for the hurtful things that you know will be said. Having brain cancer is unlike any other cancer in that a person cannot stop using their brain to live. I was diagnosed with an astrocytoma March 2007. It was originally diagnosed as a GBM but then changed to astrocytoma after the histology report came back. My tumor was in the impulse/higher functions section of the brain too, the right frontal lobe. I was too sick before surgery to do much of anything. After surgery is a completely different story. I became extremely moody and would blow up over anything. I think that most of that was from the steroids. Having a brain tumor changes a lot about a person. I go to a support group for people who have malignant brain tumors and their friends/family/caregiver, whoever else wants to come. We talk about this kind of stuff a lot. Because of the aggressiveness of my tumor I had to be treated as if I had a GBM.

I know that where we live, near Pittsburgh, PA, there are support groups for kids that have a parent or other family member with cancer. Something like that might be really beneficial for your kids. We are really lucky to live so close to world class cancer centers and hospitals. Having drugs, surgery, radiation, and chemo administered directly to brain cells will obviously cause some damage. I don't think your husband has brain damage at this point but I don't have any idea. I honestly think most of the insanity is from meds and treatment. The only thing that will fix that is time.

You're absolutely right, he did mean everything he said. I can tell you from experience that he meant it. I said hateful, venomous things to my family that I meant at the time but now feel awful about. My family was very understanding but also very annoyed with me and were constantly walking on egg shells. I think it's unrealistic to expect him to apologize for saying hurtful things after he's apologized for them. Having brain cancer is also unlike other cancers because once a person is diagnosed they usually are unable to work and go from having active, fulfilling, fun lives to sitting around taking meds all day, going to treatment, and not being able to provide financially or emotionally for anyone. I felt like a burden and I felt lousy about myself and my life. That may be playing a huge part in this. There are so many changes that occur and there's a TOTAL lack of control over anything.

My mom is my caregiver. We both belong to a brain cancer caregiver study that measures stress hormones in the blood, what stressors are for people with tumors, and what it's like for the caregiver. They're finding that people with brain cancer are not given specific enough directions for meds and other things like that when they leave hospitals or doctor appointments and they are very confusing. They've also found that many couples divorce after a brain cancer diagnosis, I can definitely see why. Another thing the researchers discovered is that the most stressful/challenging cancer to have is brain cancer.

Therapy doesn't work for everyone, some people need to talk to other who have been through it. There's a higher population of people with brain cancer in western PA than in other areas. Because of that the neuro-oncology here is world known and there are brain tumor support groups and in general cancer groups there are sometimes 2 or 3 people with brain cancer. That's strange because only a "lucky" 1.2% of all cancers diagnosed yearly are brain cancers.

I know this is long and I'm sorry. Let me know if things get any better. Oh, I forgot to mention that I'm a single mom, my son is 2 yrs old (almost 3) but he does remember things and know a lot more than what I would have thought. He remembers seeing me in the hospital a couple times, he remembers an ambulance taking me away when we were on vacation, and he will "take care" of me when I say I don't feel good. As you may have guessed, memory loss is a problem for me.

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