duckey
New User
Joined: 29 Feb 2008
Posts: 1
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 Posted: Sun Jul 06, 2008 4:01 am Post subject: The Horror of GBM |
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Hello. I’m a single child, 27 years old, and have lived in a suburb of Youngstown, Ohio with my mother Susan until recently...
In Dec 2007, my mother was in a small auto accident. An MRI at the hospital revealed GBM IV and emphysema. She went through 1 surgery for biopsy and I went on the search for information to battle back. I found this site along with many others, and have read and researched as much as I could about the disease.
We tried: Alternatives: lycopene, grape root extract, PSK, green tea extract, flax seed oil, as well as the numerous meds she was put on: neurontin (after Dilantin caused a terrible rash), valium, & steroids, etc. I began thinking her doctors had no clue what they were doing considering everything I had suggested to them was shot down. I believed in my research but began doubting myself and started going along with the rad/chemo option after speaking with the Cleveland Clinic (2nd opinion over phone).
One month after the biopsy, she completed only 1 week of Rad treatments then began vomiting and screaming in pain. Neuro ordered a MRI and found the tumor growing rapidly and surgery was needed. Four days later my mother was recovering well in the hospital and was actually up crocheting in a chair.
This is where it gets ugly.
The RAD/ONC had her back in to continue rad treatments. I asked if they had known she went to surgery and most of the tumor had been removed (this was done at the same hospital). He said he’d look into and FINALLY after two more rad treatments, adjusted the setting on the radiation machine from the old area where the tumor was, to the now new, smaller area. The red flags were flying and I started to get extremely upset with our choice in hospitals. I called Cleveland and they suggested continuing the treatments at our local hospital since there wasn’t much they could do as far as clinical trails go now, since she had already started treatment.
Things got much worse in the next few weeks. One day I came home and she was in the bathtub sitting there and would not get out. “Confusion” is what the nut jobs at the hospital called it. “She’ll be okay”, they said as no doctor would take charge as her primary doc. Getting answers from 4 different Dr’s was impossible enough but not having a sound explanation about what was happening to her was even worse. She had 1 week of rad treatment left so we continued.
By the end of the rad treatments, my mother could no longer get up on her own. It was extremely bad for about a week and a half after that, uncontrolled bladder, insomnia, confusion, and other nightmares I can’t describe. I continued taking care of her on my own until I unleashed on my “close” family that I needed some damn help and they needed to step up. I went 4 days straight with one hour of sleep here and there.
Finally, her general physician suggested a rehab place, basically a nursing home for her to stay while they tried to get her legs moving again. So, there I was, burned out, alone, admitting my mom, best friend, and companion into a nursing home. Meanwhile my girlfriend of six years and mother to my three-year old daughter told me she wasn’t getting enough attention and broke up with me. That was in January, since then we made up 2 times only to have her do it again, and then again.
So, my mother’s condition hasn’t improved at all. She completed the 1st round of Temodar and is on the 3rd month of 5days on /28days off rounds. She just recently got over pneumonia, is still in a wheelchair, and still confused. Her favorite things to do were watch tv, read tons of books, and crochet. She can do none of this now and has no interest in them. Seeing her is getting incredibly difficult. I have a tremendous amount of gilt she is there but from the staff at the rehab place, bringing her home would be an extremely unsafe thing to do.
The feelings I’m going through:
Guilt:
-from her being at the rehab center
-me still living at her home she worked so hard for while she is not there
-being with my family on holidays while they all laugh and have a good time while I’m thinking about my mom and not having fun.
Loneliness:
-missing my mother
-missing calling her from work where I work 12 hours nightshift by myself
-missing my girlfriend and daughter coming over or me going to see them now that we ‘drop’ off my daughter at each others house when I am off of work.
Anger:
-toward the Dr’s for taking me and my family through a loop and looking at me like I was some stupid young kid that didn’t know anything about a brain tumor
-at people who said ‘anything you need’ and ‘I’m here for you’ and ‘how’s your mother doing?’ over and over, where are they now? Since she was put in rehab, no one calls my house and no one stops over
-anger or hatred at my girlfriend or ex for leaving me when I needed her the most.
I have been struggling to keep afloat after all of this, not to mention the crap of going through Medicare and Social Security, and taking care of myself and the house inside/outside by myself, as well as continuing to goto work alone and still function like nothing is going on, bill collectors calling and harassing me to speak with my mother, and a new letter everyday from a ‘collection’ service.
I know I can control how I feel and I have been trying to keep busy, trying as much as I can to not think of these bad things all of the time. But, it’s overwhelming most of the time. I cry more than 4 different times a day now. I almost don’t want to go and see my mother anymore and I’m starting to lose my faith. I keep asking for some kind of break, but for months now I get more and more crap. Every single day something else happens that adds to the list of bad things. I just want to start feeling better, just a little better, if I could.
Sorry to depress you guys. I’ve been reading for months now what all of you have been or are going through. So, I’m sure some of ya can relate.
Sorry again, I just had to tell somebody.
Dave
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Mom 59 diag: 12/07 GBMIV |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3930
Location: Tennessee
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| Posted: Sun Jul 06, 2008 9:33 am Post subject: Re: The Horror of GBM |
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Dave, I am very sorry about your mother's cancer and all your problems associated with it. My mother died in 1998 with a GBM IV only 2 months after her diagnosis. She was older that your mother and much weaker and her tumor was effecting both sides of the brain, so she opted for no treatments. My father died of Leukemia in 2006. In both cases, I was their primary care provider. Through some unusual life changes, I came to live with them during this time and still live in the house they lived in for 20+ years. I have my own set of guilt, loneliness, anger, and sadness so I can truly identify with you.
You and your mother are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 523
Location: Brisbane, Australia
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| Posted: Mon Jul 07, 2008 8:18 pm Post subject: Re: The Horror of GBM |
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Hi Dave
Oh my giddy Aunt!!! I am so sorry you have had to deal with so many burdens with your Mom's GBM. There are many of us going through similar experiences...so you are not alone! We are here to support you as much as possible & I'm glad you finally have posted your Mom's story here. As you said in the latter part we can relate & it is good that you were able to get it all off your chest!
My Bro had a similar "bad" experience with rads & he completed only, 4.5 wks of the 6 wks treatment because of his bad reaction to it. He went downhill fast & was scheduled for debulking due to the pressure in his head from the tumour growth & the side effects. L side seizures & paralysis. My Bro has been in a wheechair since May last year. But he is still here & fighting this awful disease!
The whole thing can become overwhelming & we are blessed that we have a closeknit & supportive family network. I am sorry that you have felt "let down" by your support network. Especially having to deal with your own relationship problems too! Do you have a close friend/mate/workmate that you could confide in? What about your family Dr? You need to offload to someone who can offer a sympathetic ear & maybe some advice on how to manage this situation better?
Remember we are always here for you to "offload" or rant & rave. I will keep you in my prayers & thoughts & hope your burden will become easier to bear.
Thinking of you,
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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