hate this cancer

They need your help
They just don't know how to ask right now.

so sorry to hear about your

so sorry to hear about your most recent challenges. You certainly have been through it with your sister. You're right, I hate this cancer too. Before our son became ill, I felt that we were pretty close. We talked on the phone almost everyday. Since he had to move home, he is very withdrawn and doesn't say much of anything. In fact, it seems that he is pushing me away. He has started taking an anti depressant, which I hope will help him be more responsive and engaged with me and his dad.

Hubby endured steroid
Hubby endured steroid pyschosis - twice!! Never was anything more disturbing than that in our two-year cancer journey. Amazing how he can after both those wild ride have a craniotomy, become completely blind and endure the end stages of a GBM better than the ravages of steroid psychosis. I look back having learned and endured much along with him. He was so courageous and brave, and I am thankful my family pulled together when we needed them most. This is a very challenging disease and our loved ones (and us) need nothing but 110% support from those around us to be the best caregivers and champions we can be for those diagnosed.

Thinking of you. Know that you are not alone on this journey.

Kim

DistancerunnerXC said:

Some days
Since my wifes radiation necrosis dementia back in January (diag 8/09)we have nothing to say to each other at all.
Well, there is talk, I talk. it's a monologue.
Somedays it's actually humorous. I pretend that we are having a conversation and start to laugh, then she'll actually start to laugh and we both just laugh !
I don't know whether I will be living with this for years to come or months.
Either way, I'll hold out to the bitter end to not have her long term in a nursing facility because if you do that, you have committed yourself to living out the rest of your life on medicaid.
Anything you worked years and years for and saved will be squandered for tattoed nurses taking alot of smokebreaks, allowing your loved one to walk aroound all day with loaded diapers...80,000 dollars a year...doctors who never come by or if they do, break the lkand speed record inside and out of that urine/feces smelling building.....
So, that is what goes through my mind when I am begging my wife not to let herself slip away...she'll be the ship that takes everything we saved for down to the bottom.
A harsh way to look at it because I loved her dearly..we had 11.5 of the greatest years in the world..we saved everything and didn't vacation.
We were saving it for retirement and I'll be damned if it is going to be spent in one of those hell holes.
Retiring in less than a month.
I made the endzone, she's got to come through for me..
She starts her 2nd avastin treatments tomorrow because they thing they see the necrosis flaring up again....
The family after 2 years is getting a little compassion fatigue and I don't blame em.
I hate this disease too.

Hell on Earth
I am so very sorry to hear about the struggles you are having right now, I know it isn't easy.

Cancer SUCKS!!! Any kind of cancer, but especially brain cancer. It doesn't matter what kind you have, it still sucks!!!

My MIL (RIP Annie) survived 2 different bouts of breast cancer and she later suffered from bone cancer in her thumb and she often told me how valiant she was sailing through radiation, chemo, double mastectomy etc and told me to "suck it up". I proceeded to tell her that I was sucking it up, I didn't complain and that I was doing the best I can. She then continued to regale me with stories of how she would drive herself to and from her own radiation and chemo treatments. I finally shut her up when I told her that the last time I looked, we could successfully live without our breasts, but it was impossible to live without our brains. My point is this: She hated the thought that her son, my husband, was spending too much time focusing on me and taking care of my needs, just like your family and the compassion fatigue. My father (the world's biggest ostrich) thought that after the surgeries and radiation therapy, it was done, I was cured. Even though the docs and my husband had said no, I wasn't, it was going to come back.

This is difficult at best to deal with. I have learned many things throughout this process. The most important? Life is too short to piss it away and not take advantage of each and every day that we are given. Take care of your wife for as long as you can. But please, don't hate her in the process for what she has done to your life and/or your retirement. She did not ask for this, it is not her fault. I know it is easy to get frustrated and angry. But if you must, get frustrated or angry at the cancer, not your beloved wife.

Teresa

DistancerunnerXC said:

Some days
Since my wifes radiation necrosis dementia back in January (diag 8/09)we have nothing to say to each other at all.
Well, there is talk, I talk. it's a monologue.
Somedays it's actually humorous. I pretend that we are having a conversation and start to laugh, then she'll actually start to laugh and we both just laugh !
I don't know whether I will be living with this for years to come or months.
Either way, I'll hold out to the bitter end to not have her long term in a nursing facility because if you do that, you have committed yourself to living out the rest of your life on medicaid.
Anything you worked years and years for and saved will be squandered for tattoed nurses taking alot of smokebreaks, allowing your loved one to walk aroound all day with loaded diapers...80,000 dollars a year...doctors who never come by or if they do, break the lkand speed record inside and out of that urine/feces smelling building.....
So, that is what goes through my mind when I am begging my wife not to let herself slip away...she'll be the ship that takes everything we saved for down to the bottom.
A harsh way to look at it because I loved her dearly..we had 11.5 of the greatest years in the world..we saved everything and didn't vacation.
We were saving it for retirement and I'll be damned if it is going to be spent in one of those hell holes.
Retiring in less than a month.
I made the endzone, she's got to come through for me..
She starts her 2nd avastin treatments tomorrow because they thing they see the necrosis flaring up again....
The family after 2 years is getting a little compassion fatigue and I don't blame em.
I hate this disease too.

Radiation induced dementia
My hub had his WBRT in 4/09. Diagnosis, 6/08.

We are fighting the after effects every day. He gets easily distracted, is very forgetful, and has short term memory deficits.

But I refuse to let go of what he has if we can hang onto it.

He goes to PT 1/wk to help with his walking and balance. We see a therapist who also works with students with ADHD in school. He has shown us using aids such as the alarm on his phone (which he can only use send, send because he can't dial it anymore), a wrist watch alarm that goes off every hr, books on tape/cd which he listens to while reading along. This has helped his comprehension and he can enjoy reading now. ( He has worked up from not being able to read a paragraph in the newspaper!) And while he is safely reading along, i get to do something not being worried about him!

We have schedules up on the fridge and on the bathroom mirror (we used to have labels on the cabinets and drawers too)

We walk at least 5 times a week. there is something about walking that stimulates the brain to think and helps rewire what has been damaged.

I know some days are hard, some in fact, are almost impossible. I am 50 and retired to spend this time with him. I married him, not my job, and I haven't regretted stopping work to stay home.

I also pray alot, use the phone to talk to friends, go out once in a while for facetoface talks with them and spend time in the chat room here. Love our survivors and caretakers...

I hate this disease and will fight as long as I am able to keep my man the best he can be.

Good luck. You will both be in my prayers as everyone here is...

micgrace said:

I hate GBM so totally as
I hate GBM so totally as well. Our family is but a shadow of what it once was. No relationship exists anymore between myself and my prior inlaws. Everyone starts blaming everyone else as to why didn't they spot the symtoms, couldn't something have been done earlier? Every nasty thing that has ever happened seems to have a habit of popping up. My inlaws accused me of not noticing symtoms, of not doing anything, of letting her die. That I cannot forget. I do forgive them though.

Truly GBM is a disaster to a family. Worth noting is these normal signs of grieving you are going through and I have already been through. The stages are, denial, anger, loss/sadness, depression, acceptance, recovery. From my very unpleasant experience, anger is the most intense feeling of all. Just how intense is unbelievable. My daughter is still angry after losing her mother. She is very difficult to handle and my loss is some 4 months ago now. i still have to figure out how she can be assisted to "move on" through the grief process rather than getting stuck.

Also worth noting the grieving begins almost as soon as the diagnosis is made. What a monsterous disease GBM is. Truly anyone who has to face GBM deserves a medal.

family torn
Yes brain cancer is an ugly ugly disease. There was a quite a bit if a clash between my sister and my parents. The reason being that we all do not see eye to eye with religion and spirituality. My parents would have the tendancy to "preach" and my sister just wanted her mommy and daddy to love her and be there for her uncondionnally.

A new dynamic was set in motion: Katia felts more comfortable around myself and my other sister than or parents. So they are sitting a bit on the sidelines (which I know is difficult for them). But it is not about me or my parents. It is about Katia and what she needs to do to reduce her stress in her life. My parents are a huge source of stress (they don't mean too, it just is). They talk about alternative medicine (and forgoing radiation) and "kumbayas" while my sister is a very scientific individual.

Eventually, I do believe that love will conquer all. I just hope it is soon because we all know how time is precious.

Julia