One patient with glioblastoma still alive nine years later
by SarahGrey on Thu Jan 10, 2013 06:48 PM
just curious how many people have experienced moments/hours/etc where the patient with brain cancer (in this case, GBM in temporal lobe) cant recognize loved ones?...
it's happened 3 times now since my husband was diagnosed last May. the last was 2 months ago, ridiculously enough on our wedding anniversary. sigh... today, i am the 'girl who works here, taking care of him and checking his blood sugar, etc...' we've been together 17 years... i can handle anything - not this... doc says it's just a seizure and it will happen...
just curious how many other people have gone through this and if anything has helped? or, if it just needs time?...
by herrmajo on Fri Jan 11, 2013 05:50 AM
Best wishes to you in this complicated unknown,miserable journey.
My Kevin always knew who I was but got to a point where he did not recognize our home that we lived in for 23 years and would beg me to get him out of there, because he hated it and it was not ours but my grandparents, funny thing is he never knew my grandparents, so would take him for a ride and then he'd be okay for a little while and then back for another ride. I hope in your case in was just a seizure that scrambled things a bit and that he will come around, that has got to be the most miserable feeling for you!
Prayers are with you and hope things can get back on the upswing.
by swplusit on Mon Jan 14, 2013 12:12 AM
Hi, Going on 30 years of marriage and my husband do not know my name sometimes or can say my name. He just call me honey and my daughter name sometime. Some days better than others. Just keep praying and it will get better on some days and some days rough. But your good days and memories will out weigh the bad days and think about what horrible feeling they must be going through.
by eternalife on Mon Jan 14, 2013 12:23 AM
I don't think the cause is just brain ca, it can be cancers of all kinds. My husband has stage iv EC and I think just having cancer is gruesome, there is something called" chemo brain", I am beginning to believe it. After some 14 months of chemo, my husband of 33 years is just not the same man, he seems to be self absorbed and just in a world of his own at times. I don't know how I would be, so I won't judge. As caregivers, consider yourself a spectator, life goes on, just not in the fashion, one would hope. There is no normal anymore, our lives are somewhat govern by the other guy.
Don't forget we are our own person and stay strong, find passion in the things and people that love you. Be true to yourself. We are on our own journey with or without our cancer husbands.
Best to all , may the cancer beast be gone....
by SarahGrey on Mon Jan 14, 2013 12:38 AM
Thanks for the encouragement! Thankfully, the seizure lasted "only" 7 hours. Wow, what a looong day... and I think my husband was going crazy with me asking every few hours "sooo do you know who I am now?" Thank God I was always familiar and comfortable to him - just the details got confused.
But as someone mentioned, yes, it was ridiculously hard on him. He's still himself, still has emotions, thoughts, etc (obviously) - and it was causing him horrible pain to not know what was going on... this stuff is so cruel... I told him not to feel bad, that's it's not in his control, etc... that it would pass... thankfully, it did.
Praying for health for everyone...
by amydibello on Mon Jan 14, 2013 07:05 PM
I'm so glad to hear that painful day ended well. GBM iv is the cruelest disease imaginable, as you mentioned.
My prayers to you all of us living through this nightmare.
love and light,
by Gbm_Wife on Mon Jan 14, 2013 09:00 PM
I am a little disturbed that the Dr thinks its ok to have seizures. Seizure medicine is kind of hit or miss. My husband had grand mal seizures that took many trials with different meds before we found the dose and med that worked for him. What works for one might not work for another. Seizures are very stressful for everyone involved and there should be an effort to get them under control.
by SarahGrey on Mon Jan 14, 2013 10:56 PM
On Jan 14, 2013 9:00 PM Gbm_Wife wrote: I am a little disturbed that the Dr thinks its ok to have seizures. Seizure medicine is kind of hit or miss. My husband had grand mal seizures that took many trials with different meds before we found the dose and med that worked for him. What works for one might not work for another. Seizures are very stressful for everyone involved and there should be an effort to get them under control.
On Jan 14, 2013 9:00 PM Gbm_Wife wrote:
I'm with you on that one! In fact, if my husband lays down awhile or is sitting awhile (roughly at least an hour) and then gets up quickly and starts walking, about 50 feet into the walk he will start to have a seizure. Needless to say, I need to catch him. Literally. Once he sits for a minute, it passes.
We've told the doctor several times of this and at first he said it's just blood pressure and he needs to first stand still for a minute and THEN start walking. But... I don't know... sounds weird. Though it does seem to help. Anyway, we mentioned it again last week and the neuro-onc literally shrugged and said "we need to keep an eye on it." I believe my jaw dropped.
Thankfully, the seizures (where he gets confused as to who I am) happen only once every 2-3 months or so. I'm nervous to have the doctor add more seizure meds because my husband is already sleeping 20 hours a day and I fear it will make him even more lethargic - if, at all, possible...
by angel1959 on Mon Jan 14, 2013 11:25 PM
My husbands seizures were strange too it is not BP it has something to do with the cancer he never forgot who i was but was on so much meds for pain brain swelling seizures meds to stop the seizures that he slept alot also hospice always said that the cancer was progressing and that is why he was the was he was i hated to watch him like that and scared me alot of times i lost mine 30th of october and it is so hard i pray for all you caregivers out there i hate cancer and what it does to people and the hell they go through my best to all of you
by SarahGrey on Tue Jan 15, 2013 01:25 AM
the irony is, just a few weeks ago, the mri showed the tumor(s) had shrunk in half! soooo i dont know what to think - is the lethargy his body trying to heal itself, is the tumor actually progressing when the scan showed the opposite, is it something else?... i'm thinking it might be something else - the doc keeps trying to taper his steroids - i increased them slightly yesterday (and got permission from doc today, lol) and he was doing somewhat better today. thank God! soo we'll see... next scan is middle of feb - seems very far away...
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