people say to me you look great . i do but they dont understand how one dsy you can be in a great mood and the next day you can be in the mood from hell . they say they understand but do they ?
You are right. "They" may not understand, but we do.
I have a large group of friends and I can describe things until I'm blue in the face, but they won't really understand. It seems there's a huge posse of gals with breast cancer and they have their own support groups, fun runs, and pink products; I'm not holding my breath waiting for same support network for women with brain cancer.
Since all this stuff started with me, I made a friend with a woman near my age who also has a neurological illness (but not cancer). She and I get together every week or so (neither of us can drive!) and have tea, talk about all the crazy doctor appointments and scans, and play Big Brain Academy on Nintendo Wii (and make fun of each other for not doing well in the "Memorize" category). We'll sent text messages late at night when we can't sleep, and call each other after crazy visits to the emergency room.
Yes, it will be frustrating relating to everyone in your "normal" life, and that's why I am grateful to have made a new friend who understands.
I didn't realize how fortunate I am to be in an area that has so many live cancer support groups that meet all the time on different days. I live in Western PA, about 20-30 minutes north of Pittsburgh. I go to a general cancer support group on the 2nd/4th Wed. and a brain cancer support group on the 1st/3rd Wed. The funny thing is that there are people with brain tumors that go to the general support group too. One woman is celebrating her 10 yr GBM anniversary in a couple weeks. Of course she has crappy days and moods and I completely know what she's talking about.
Brain cancer is nothing like the other cancers because the organ that controls all the others gets compromised in the battle of your life, so what can you expect, you know? I haven't heard a brain cancer survivor yet that didn't complain about acting like a complete maniac when it comes to their moods. I'm a moody jerk at times. I hate being like that, I could blame my tumor because it was right where my personality was affected but I don't know how long I can use that excuse for. I know my family has already dismissed that. I could blame the radiation that surely zapped some of my brain or what about the chemotherapy that got rid of healthy brain cells, I have some good excuses but nobody really wants to hear them. All they know is that I was acting worse than my son who turned 3 a couple months ago and that's all they really care about.
Last week I complained about the exact same thing you're talking about and got the classic "I know what you're saying" from our facilitator of the group because she's a social worker and her mother and father-in-law died of cancer. I've learned to ignore that from people who aren't in our "members only" club of brain cancer. It's just like when you tell someone that you can't drive. They don't get that either because they haven't been there (unless they have DUIs or something else going on). People actually assume you can't drive because you have DUIs I found.
People just don't get it because God didn't give them the same grace that he gave you-the grace to maneuver your way through brain cancer and be the best person you can be because of it.
All that sounds great above and I sure wish at times there was a support group where I live. (A face to Face one that is) I am not wishing to be one of the male moncho guys even though I may look like one; I owuld like to meet up with others in my position with brain cancer. Be able to talk on a same level, What I don’t like is to be talking to someone and they are saying how their,” Brother-in-law” had brain cancer and lived 2 more years after diagnosed! (Well that gives me a lot to look forward to) People want to be able to relate but, Please leave out the “then they died” part. I want to hear the good stories. I did go to Relay-for-life and am going here in a couple weeks to another, there I can find others with brain cancer, and there I can find good stories. I really believe you are right though; people with Brain cancer are in a group alone. So many different things happen with it, I have had cancer in many different places (Tumors) and Brain cancer takes priority over all in many ways, I see even while typing this letter, I type some words, backwards, “abckawodrs” which I had never done before. And yes MOODY, I was never a Moody person, I am always USED to be cool, calm, collected. Now there are days I could jupm outa my skin! Bite others heads off for no particular reason. And that does not then later make me feel very good inside. But at least I can write here. Thanks all. ~~MIKE~~
As much as I try and explain to my sisters how hard things are sometimes or apologize for
my mood it does't matter. I think my sisters are starting to understand but than they come out with a statement that gets me frustrated because it tells me they are missing the point. I am in a cognitive remediation class with people who have issues I have. One person in this group said that others can't understand unless they have gone through it.
matty, as a care giver of a cancer survivor(grade 3 anaplastic astrocytoma) i can tell you that it isn't that they don't understand it is they don't want to believe this is happening. it is hard to face that a loved one is seriously ill. they love you and don't want to see you go through this. let them know how you feel and go to a psychologist to help you deal with your frustrations. both my husband and i did so and it helped.
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