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hate this cancer

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I hate this cancer and what it is doing to my family, It has taken my family and ripping us apart. We should be standing together and helping my sister. The cancer, decardron and morphine have changed everything. My heart is broken I cant even talk with my sister. Her children are fighting, Im getting pushed away. I dont even know what to do anymore.
Anyone that is being faced with this please remeber that many people have a relationship with your loved one. They have touched many lives. Everyone is hurting. Everyone is trying to help. Im bleeding and my hands are being tied...

DevsDad
Posts: 6
Joined: Aug 2011

I hope that communication with your family improves! I know this is hard.

DevsDad
Posts: 6
Joined: Aug 2011

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

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am so sorry that you have to go through this. Decadron, in and of itself, should be banned. It causes steroid psychosis in many patients and we don't act like our normal loving selves.

Please take care of yourself and know that you and your family are in my prayers.

Teresa

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

decadron is what caused my sister not to be able to walk right now, it caused bone nicrosis.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

My husband and I are having a hard time since my daughters cancer diagnosis. I have pretty much shut all of my feelings off for most things and he is one of them. We have never talked less than we do now. I feel that I barely have enough strength to fight for and with my daughter through this cancer, I do not have the energy nor the want to fight any other battles. I hope this feeling or lack of goes away because if it doesn't, I'm not sure how this will all end

connsteele
Posts: 232
Joined: May 2011

Yes, when cancer strikes, especially this terrible type of cancer, it affects the entire family. My husband and I are the only caretakers for our son, who is 34 and can't be left alone, as he is prone to falls. We haven't been out together since his diagnosis in April 2011. I am seriously thinking of going to a counselor who was recommended by our local American Cancer Society rep. This counselor leads the local brain tumor support group, so she has lots of experience with families dealing with brain cancer.
I find myself getting really irritated with my husband over trivial stuff. I know that it's not really about those things. I want to talk about what we're dealing with and he wants to go work in the garage. We all cope with stress, sadness, grief, anger, in our own individual ways.
But we have to stick together in this, for not only ourselves, but also our kids. Hang in there.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im sorry, I know nothing seems to matter. I have nothing to give anyone. My prayers are with you and your daughter. The day my sister found out it was what it was she told me that she was grateful it was her and not one of her kids...

connsteele
Posts: 232
Joined: May 2011

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.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

hope things get better for you too.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

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's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

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.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

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

leprechaun2
Posts: 76
Joined: Jul 2011

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...

katyana72
Posts: 5
Joined: Aug 2011

I am so sorry that you are going through this. Some of the time, a tragedy can bring out the worst in people. Not because of that is how they truly are but because they are hurting as much as you and may not be sure how to deal with their grief.

My father has visitors all most every day, and while part of me wants to be selfish, I have come to realize that they want to spend time with him just as much as I do. Make the most of the time you do get to share with her whenever and however you can.

My prayers are with you and your family during this difficult time.

Katyana

micgrace
Posts: 131
Joined: May 2011

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.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

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

luisn
Posts: 1
Joined: Sep 2011

Dear 4theloveofmysis, my heart goes out to you, I have a brother who was recently dx with glioblastoma IV, my heart is broken I love him more than I love my self, I suggested you talk to your nephews, explain to them that now more than ever you have to be together, be strong for your sister, have a positive attitude around her, pray a lot and let God take some of that heavy load off your shoulders, this is bigger than you and me, is nothing we can do other than give moral and spiritual support, lots of love and understanding, your sister kids are fighting because they are confused and afraid they may lose their mom, is perfectly normal, you may have to be the strong link between them. I hope this help you a little. My prayers are with you. Good luck.

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