the in between stage..

4 Posts | Page(s): 1 

the in between stage..

by ange1 on Wed Oct 28, 2009 09:19 PM

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Hi there to all the family here on cancercompass. It's been a few months since I've posted, but I always catch up when I can.

My dad, Rory, finished his chemo and radiation September 1st. Just a brief history..he was dx Nov 08 right temp lobe. They were able to get it all out..minus those legs of course..he had no insurance so had no option for treatment. Lucky for us, he's a vet..so got him into the system..but before that was all said and done..tumor grew back..So, May 2009 had it removed. Finally started the treatment in July. One set back with swelling in September..a week stay in hospital since I could not get him to take meds at home to control swelling. The NO isn't sure that there is or isn't a tumor there so instead of waiting three onths we will get a PET scan in the next few weeks. So..here we are in October. My dad was living by himself. Just this past week I've decided it's time for him to move out of his house. I can't be a full time caregiver and we can't afford in home health care. I found a nice retirement apartment that provides meals and transportation along with someone there 24 hours a day. Now, this isn't a nurse but it's better than nothing. The VA can't help until he can no longer get out of bed or walk,yada yada yada....not to mention my dad was s/e and didn't have insurance has a ton of bills and no income since May..so..it's time to unleash the house, the car cut our losses and RUN!

So, to sum all this up..he's not taking any chemo right now. And still does not feel well enough to fight. I always tell him I'll back him up on whatever choice he makes..but I hate seeing him slowly start to go. I can only hope that maybe this is all due to the radiation and he might start to feel better soon.

What I can complain about is the in between stage. My dad can still talk, walk, shower, dress himself, and eat. But he has horrible short term memory, can't cook for himself, can't pay the bills, or remember to take his meds..or drive...or work. He is 59, and feels okay in his head..he wants to work..he wants to LIVE..and his body wont cooperate. That is what breaks my heart. And..boy do I mean break. What a huge horrible dose of reality to watch someone suffer..not from pain..but from wanting to live and not being able to. So, some days I pray that maybe the teeter-totter will tip. Honestly, any direction would be fine with me. I just want something, anything for my dad. It's so hard for him to be in this "in between" state..and I have a feeling it could go on for awhile like this.

Depressed and finding it hard to look on the bright side today...

Angie

 

RE: the in between stage..

by heart_and_soul on Wed Oct 28, 2009 10:03 PM

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Angie, I know what you mean. Don't feel bad about not liking this stage. I don't like it much either. Who would like it? Some days it hits harder than others. The best way out of each moment though (for me) is to focus on the minute... the actual time that we do have together. We still love each other. I might look back on this year and think wow... I really got to spend some amazing hours with him. We're not talking a lot about his deficits (the same as your father's)... we're trying to have some good times.

Sounds like you're doing an amazing job of helping your father negotiate all the labyrinth of insurance etc. Bless you for that! It's overwhelming.

Love, Sarah

mom of Andy 27 dx gbm/pnet 1/09

RE: the in between stage..

by garyswife on Thu Oct 29, 2009 12:41 AM

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I'd have to say that you summed up this journey really well.  It's so hard to see the person you love have their life taken from them way before they're ready to let it go!

Best to you!

Jennifer

RE: the in between stage..

by jannibc on Thu Oct 29, 2009 02:07 PM

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Hey darlin',

Remember...as long as we have breath in our bodies, we have purpose.  Your dad needs to know that he DOES have value and purpose no matter what his body does.  Do you have a nearby chapter of the American Cancer Society?  They often have counselors and folks who get patients involved with groups and activities.  Our community has "The Wellness Community" - a national organization to support patients and caregivers.  His will be to useful is great...so important.  His body just needs time to recover.

We have you both on our prayer board, and over 100 kids will be praying for you daily.

all love,

janni (wife of steve gbm iv 11/07) ps...here is our caring bridge site...you might want to make one for your dad to keep him in touch with others.

http://www.caringbridge.org/visit/stevecalloway

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