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duckey
New User
Joined: 29 Feb 2008
Posts: 3
Location: Ohio
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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
_________________
Mom 59 diag: 12/07 GBMIV
Passed away: 12/08 - 60 years old |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
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
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 576
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,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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duckey
New User
Joined: 29 Feb 2008
Posts: 3
Location: Ohio
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| Posted: Mon Mar 16, 2009 1:24 am Post subject: Re: The Horror of GBM |
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My mother passed away on December 12, 2008.
My girlfriend came back during that time and was there for me during the funeral. It makes me wonder and I don't know if I am with the right person ever since these terrible things began happening.
I visited my mothers gravesite for the first time on March 12, 2009, 3 months after she passed away.
I miss her guidance and would give the world to hug her again, even one last time.
The grief I've experienced was shortend by the fact that she moved out and into a nursing home, now which has been 1 year ago. I guess I started grieving once she moved out. I turned to my friends, which only influenced me with drugs and alcohol. They're not that smart, but I had no one left. In the end, they were the ones there for me throughout everything. Once my girlfriend came back things became somewhat okay, although I still remained closer to my friends which no doubt, was an ugly time through my life.
A month after my mother died, I felt no much more void than I did compared to when she moved out. I guess seeing her taken to a nursing home was the 2nd initial shock, 1st being diagnosed with GBM. Now, she was gone, supposedly in a better place. I continued on, by myself.
The worst was thinking what she was thinking. Wondering if she knew what was happening, and feeling her lonelyness. I'm not sure if anyone reading this is an only child and can relate but for the few that actually make it through this posting, I'm speaking to you.
My mother was a strong woman. Most of the girls I meet today couldn't stand up to my mother's kneecap. She had [b][u]backbone[/u][/b]. But I watched her as the doctors played actors in a play that would close before its time. Except for the neosurgeon that acted as the only help (removing a portion of the tumor), no one came to our aid. I do respect the nurses and aids that helped through this process, but for the most part, we were at it alone.
Now that she's gone the true feeling of support is gone as well. Family is only family, perse. Friends, caregivers, and those who supposedly love you forever, can't really do anything to help. The only help there is through any of this, is for somebody to turn off the thought process about what happened or what is happening. Even someone taking you out for ice cream or a dinner will help. But truely, we are alone. That's how we came in, that's how we go, and I guess that's how we deal with such a tragedy.
The worst thing I've had to deal with through all this is dreaming about my mother being alive, or okay (not sick) and then waking up to the reality that she's not here anymore.
_________________
Mom 59 diag: 12/07 GBMIV
Passed away: 12/08 - 60 years old |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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Mama 2 2
Senior User
Joined: 29 Nov 2007
Posts: 107
Location: Sunshine Coast, BC
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| Posted: Mon Mar 16, 2009 3:34 pm Post subject: Re: The Horror of GBM |
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Hello Duckey,
I am so sorry for the loss of your mother, who clearly meant the world to you. I must say, she was an incredibly lucky woman to have had a child so caring and devoted to her and I'm sure that gave her an incredible amount of peace through such a horrible illness.
I am also sorry to hear how hard it all has been on you. I think it is true as you say, many people offer help but how many are there to actually give it when the time comes? I am fortunate that, though there are many who offer, I have found a number of good friends - oddly enough many of them are people who have only really just become friends after hearing of our troubles and have repeatedly offered help and followed through - I hope that you can find this in your life as well, and not just empty offerings of dulling pain with alcohol.
Just know that here, you can find support - though not in person, we are all going through much of the same and can relate, understand, listen and care.
I hope you find some peace in this difficult time.
~C~
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Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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heathermarie
Regular
Joined: 21 Jan 2009
Posts: 10
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| Posted: Tue Mar 17, 2009 1:18 am Post subject: Re: The Horror of GBM |
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| Just wanted to note your mother and daughter are very lucky to have someone like you in their lives. You sound very caring. |
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heathermarie
Regular
Joined: 21 Jan 2009
Posts: 10
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| Posted: Tue Mar 17, 2009 1:23 am Post subject: Re: The Horror of GBM |
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| just noticed your second post... now you've made me cry.. you are absolutely right.. the only comfort i find in all of this is not thinking about it at all... and then i feel guilty for trying not to think.. |
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duckey
New User
Joined: 29 Feb 2008
Posts: 3
Location: Ohio
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| Posted: Fri Aug 07, 2009 5:40 am Post subject: Re: The Horror of GBM |
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Today would have been mother's 61st birthday.
Its the first one without her.
It's been almost nine months. The pain is becoming somewhat easier to deal with. The reality that my best friend isn't here anymore still hurts. Life seemed a lot easier with her here.
I miss her a lot today.
_________________
Mom 59 diag: 12/07 GBMIV
Passed away: 12/08 - 60 years old |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5970
Location: Tennessee
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