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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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 Posted: Wed Aug 20, 2008 6:38 am Post subject: Re: My Story - Part 3 |
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Over the last couple of days, I have had a very hard time staying awake.
I have a history of depression. When I am depressed, I really just want to stay in bed all the time and die. This is NOT what is happening to me now. I WANT to get up but after a few minutes up, I am practically falling back to sleep... almost like narcolepsy.
I just did my admin function of reviewing applications and need more sleep even though I have slept 17 hours in the last 24... same for the 24 hours before that.
When I sleep, I sleep very soundly. I just started using a CPaP machine for sleep apnea and am not even aware of having it on.
I know that I need to call the doctor... if I can stay awake long enough to do that. I do not think this has anything to do with my cancer, but I am not a member of a narcolepsy forum  .
Unfortunately, tomorrow I am supposed to go and help my son move to the University... 4 hour tips to where he now is + 5 hour trip to the university.
_________________
Jim
Site 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=2405My 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
Blog http://jimhawkinsport.blogspot.com/ |
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pbj11
Site Admin
Joined: 12 May 2007
Posts: 1407
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| Posted: Wed Aug 20, 2008 8:03 am Post subject: Re: My Story - Part 3 |
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((((Jim))))
This is quite alarming and you should be calling the doctor to find out what is going on. How in the world are you going to move your son and drive back? This is not good Jim, not good at all. I'm very sorry.
Please put a call in to the doc and find out what is causing this. Let's hope it's just some kind of bug going around and this is how it's manifesting itself.
Keep us posted --- we worry, ya' know?
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.
Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0 |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 575
Location: Brisbane, Australia
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| Posted: Wed Aug 20, 2008 5:24 pm Post subject: Re: My Story - Part 2 |
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Dear Jim
I hope & pray you are able to speak with your Doc about the fatigue you have & also that you can rally sufficiently today to help your Son move to the Uni.
You are always in my prayers & thoughts.
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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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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jenugl
Moderator
Joined: 24 Sep 2006
Posts: 198
Location: Cairns, Queensland, Australia
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| Posted: Thu Aug 21, 2008 5:07 am Post subject: Re: My Story - Part 3 |
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Hi Jim, I'm so glad to hear that they solved the mystery for you and that it is nothing serious. I thought by now you would be able to do your work in your sleep anyway  Keep staying healthy. Love Jen.
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Love to all. Jen.
_____________________________
Partner of GBMIV survivor - so far.
http://cancerforums.net/viewtopic.php?t=9502 |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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| Posted: Fri Oct 24, 2008 1:57 pm Post subject: Re: My Story - Part 3 |
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I do not have much dramatic news to add to my story. The last few months have just flown by so fast. I have not had a seizure in almost 3 years now but still have times when it is almost impossible to talk... I stutter when I try. I continue to have some right sided weakness and balance problems. The other day I fell off or a ladder three times trying to replace on lightbulb... not far, just a couple of rungs and landed on my feet. Ce la vi (sp?)
I guess the reason for the update is that my neurosurgeon's office called yesterday to remind me that on Nov 6 I have another followup MRI. Nov 7 is the "anniversary" of my original diagnosis. It will be my 16th year. I have lost could of the number of MRI's I have had during those years. They are so routine now that my biggest problem is staying awake  .
All joking aside, it is around this time that I start asking myself: "What if they find something? What is those falls were a sign the it is back?".... and on and on  .
_________________
Jim
Site 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=2405My 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
Blog http://jimhawkinsport.blogspot.com/ |
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Mama 2 2
Experienced user
Joined: 29 Nov 2007
Posts: 82
Location: Sunshine Coast, BC
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| Posted: Fri Oct 24, 2008 3:36 pm Post subject: Re: My Story - Part 3 |
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Jim, as always you are in my thoughts and my heart.
I always get stressed out, starting about 2 weeks before an MRI. Our next scheduled one isn't until Dec 1st, but given the expense of the naturopathic treatment we are now trying, it would be cheaper for us to pay for one privately and stop treatment if it's not working, then it would be to continue paying for the treatment for an extra 4 weeks.
If it is working, then it was just an extra cost and WOO HOO! So he should be getting a scan around the same time as you. Fingers, toes and eyes crossed for you both!
BTW - glad to hear you landed on your feet!
~C~
_________________
~Life's too sweet to be bitter~
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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Tammy
Experienced user
Joined: 27 Nov 2007
Posts: 82
Location: New Brunswick, Canada
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| Posted: Sun Oct 26, 2008 12:03 am Post subject: Re: My Story - Part 3 |
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I will try this again, I am sure I posted to you earlier but its not here, I have noticed that I have been forgetting how to do certain things, actually I have a hard time to focus on what I am doing ans confused on what I am doing at times. I am all mixed up again so I just want to lreave you this little note ... Take care
Jim......I know what you mean about stressed out before the tests and results, always thinking the worse, I hope all goes well for you...
Always have hope, faith and Love
Tammy |
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Anguss
Regular
Joined: 10 Sep 2008
Posts: 38
Location: England
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| Posted: Sun Oct 26, 2008 5:31 am Post subject: Re: My Story - Part 3 |
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Sending several million positive vibes across the Atlantic to you Brainman.
Jillx
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"Walk Tall Jill" |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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jeanyb
Regular
Joined: 19 Oct 2008
Posts: 15
Location: UK
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| Posted: Sun Oct 26, 2008 12:28 pm Post subject: Re: My Story - Part 3 |
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Hey Jim, wicked! You could make a film, lol! Excuse my strange english humour. Seriously, I pray your results are good, am I right thinking that you have one hell of a survival history? I do hope you continue doing so well, fingers and toes crossed! Jeany x 
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Jeanyb |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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| Posted: Mon Nov 03, 2008 5:22 pm Post subject: Re: My Story - Part 3 |
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I do not know if I should add this or not but here it is anyhow. Last Friday and Saturday another member posted the story of a friend of hers:
>Olygodendroglioma Grade II diagnosed in 2005
>She was told 5+ years before a recurrence
>MRI November 2007 showed no sign of cancer
>Jan 2008 the cancer was back as a GBMIV
>She was told 9 months to live
my story:
>Oligodendroglioma Grade III in 2005
>Told 7+ years before a recurrence
>MRI Feb 2008 showed no sign of cancer
>Currently symptom free
>MRI scheduled for Nov 6
Just too much in common for comfort. Yes, I have survived. Yes, everyone is different. Yes, it is common to get anxious before a routine followup to make sure the cancer is still gone. Nevertheless, now I am fully aware that even if this MRI is clear, that does not mean that in a few months I will not have a GBMIV as well.
I am anxious and a little freaked out but I am not in panic mode yet. I do not tend to panic anyhow. But I am updating all of my files and reviewing the list of things that I still would like to do with whatever time I still have left.
_________________
Jim
Site 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=2405My 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
Blog http://jimhawkinsport.blogspot.com/ |
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Mama 2 2
Experienced user
Joined: 29 Nov 2007
Posts: 82
Location: Sunshine Coast, BC
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| Posted: Tue Nov 04, 2008 12:44 pm Post subject: Re: My Story - Part 3 |
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Oh Jim,
I will certainly be thinking of you tomorrow. We have actually managed to book an MRI for Elias the same day, so we'll have all our fingers and toes and eyes crossed for both of you.
I know it's tough when you hear a story that sounds similar to yours and can make you scared if it's not a great situation - but your story is so inspirational to others and your courage and strength to share it all so openly no matter what is truly admirable.
May you have the strength you need for the day.
~C~
_________________
~Life's too sweet to be bitter~
Our Story: http://www.cancerforums.net/about7982.html
www.caringbridge.org/visit/eliasminatsis |
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brainman
Chief Admin
Joined: 13 Oct 2005
Posts: 4441
Location: Tennessee
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| Posted: Thu Nov 06, 2008 6:10 pm Post subject: Re: My Story - Part 3 |
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Well, I am back. I got home a couple of hours ago and have been reviewing the MRI images for this time vs the last time. I concur with my neurosurgeon; there is no sign of cancer. It is always good to know that my neurosurgeon agrees with my assessment .
I told him about my anxiety and concern. He told me that yes, it can return and return quickly and aggressively. But that in his 15 years as a neurosurgeon he has only seen a couple of cases like Cally's friend.
Still, I have to be watchful.
Eight more months until the next MRI
_________________
Jim
Site 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=2405My 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
Blog http://jimhawkinsport.blogspot.com/ |
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