21 yr old daughter w/ oglioastrocytoma 2

My daughter moved home from college in May after she was diagnosed with a brain tumor. We went thru years of searching for answers to her health issues. Debilitating back pain for a year finally caused us to seek doctors in 3 states & finally had the 3rd neurosurgeon who saw her tell us that her twitching was not a pain response, but probably a type of seizure & sent her to neurologist. MRI & there it was... and the report noted that it seemed to have been 'missed' in 2007 by the radiologist at that time! OMG...I am so angry at the medical community for failing us for so many years.
Beyond that my daughter had tumor 100% removed! YAY! She is just starting on temodar. Today we had a huge fight because she tells me that I am smothering her & that I must not believe in her or trust her, because her father & I want her to stay w/ us until we can see how the temodar affects her. I feel that I try to give her plenty of space, but she seems so depressed and shut in her room. I try to get her out of the house, but she never wants to do anything. On occasion she will get out with a friend, but that seems to be few & far between due to the age of her peers.
Anyone have suggestions or experience similar anger issues w/ young adult cancer?
"Best Intentions Mom"

Comments

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  • yeah, at that age, any young adult wants to be out on their own. I had to move back with my parents for a few months when I finished undergrad while I looked for a place and all that. it was awful. now, at 31, I have to do a similar thing while my wife and I look for a house in a new city.

    don't push her too hard. part of it is that she needs to realize that she's going to need some degree of help in her treatment most likely. she also needs to realize that by letting people help her (even when she is perfectly capable of doing it herself), she's helping them feel better about the situation because that's something they can do for her. you can call it being gracious, I suppose. i read an essay about that awhile back that was very eloquent. I wish I remembered where I found it, but it's worthwhile for cancer patients to read because blocking out people who want to help can be quite detrimental to relationships.

    some counseling might be helpful because it can be hard to take information like that from family.

    I found that meeting other young adult survivors was very helpful with facing what I went through. realizing that I wasn't alone, that their experiences were very much like mine, even if they had a different type of cancer. and especially talking with others who had survived it longer, and listening to them regarding ways that they coped.

    there are some awesome retreats and conferences and stuff available for patients/survivors. Stupid Cancer organizes some of them, but there are also many other groups that do some really cool stuff. Organizations like First Descents that do paddling trips. True North Treks that do backpacking trips. Planet Cancer organizes some cool stuff (I went to a Planet Cancer retreat at a spa...oohhh, that was nice). something like this stuff can help her grow from the experience.
  • Thanks for the thoughts. I have seen you on here quite alot & commend you for being a survivor and fighting the fight while encouraging others! Praying for you to get to 5+.

    She has started counseling & we are to move into family counseling after she works with the doc for a bit on her own. I have been reading now that this is very typical, so at least I feel that it is not something that I am doing wrong specifically. I realize that she does deserve to go & make her way in this crazy world!

    Ashley was all set to go to the Denver i[2]y support group and then UGH, she felt so horrid with another wicked migraine that she missed going! I really want to see her find peers who can help her thru this.

    I HATE STUPID CANCER FOR ALL OF YOU i[2]y's & FOR MY ASHLEY!
    I HATE STUPID CANCER FOR LITTLE REAGAN 4 1/2 WHO JUST PASSED AWAY.
    I HATE STUPID CANCER FOR ALL THE PARENTS WHO WISHED SO BADLY THEY COULD
    TAKE THIS BURDEN & BEAR IT FOR THEIR KIDS!