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How much longer?

ryc
Posts: 4
Joined: Apr 2010

I am sure it has been discussed before a hundred times, but I just can’t seem to find an answer- HOW MUCH LONGER? My dad was diagnosed with an inoperable GBM IV in May of 2009. We had about 2 good months after diagnosis and while he was receiving Temodor and radiation. Since mid-July of 2009 my dad’s quality of life has been extremely poor- two very large pulmonary embolisms (4 months apart), a perforated bowl, kidney stones the size of green peas, static seizures about once a month, inability to walk/stand since mid-January, severe depression (depress. meds. haven’t worked) and infections of all kinds. We stopped all treatments in Dec. because his body was just too weak and whether it’s true or not, my family blames the chemo, Avastin and radiation for most of what has happened (besides the kidney stones). It seemed like after every bout of chemo and/or Avastin something terrible would happen and put him in the hospital for 4-5 weeks in agony and at the edge of death.

Yes, we have had good days (although few and far between) and we have been hopeful and positive all along but now it has become unbearable, as he has been ready to go for some time now. Since May of 2009, we have lived everyday like it was going to be his last and as a result my family is exhausted and about to implode. For the past two months, my dad has looked to me to assure him that, “it shouldn’t be much longer, Dad. It will be over soon just hang-in-there.” I can’t stand to tell him that anymore because I just don’t know if that is true.

He is in a constant state of confusion, bad short term memory, very weak- left side in particular, stares off into space, hallucinates, gets annoyed very easily, and his left eye droops. He started out at 235lbs and now weighs about 145. He stopped eating for awhile but has been eating like a horse the last two months. I have read symptom time lines on many web sites, but he has had many of the end-stage symptoms for over 9 months. Of course, no MRI since December (last embolism) when the doc told us to call in hospice and make preparations b/c we halted treatment. The December MRI showed that the tumor was in remission. The hospice nurse told us that time was short (2 weeks max.) two months ago. Every time I think we are at the end, nothing happens, and in a few cases he has a huge rally. I apologize for how callous, hopeless and negative I may sound. I do not simply want my dad to die - I just can’t stand to see him suffer anymore and he begs God every night to take him. I know average life expectancy with GBM IV is twelve months and we weren’t even given that long. Even though such a long post, I have left a lot out as we have been going on for 11 months now. Does anybody have a similar story? HOW MUCH LONGER?

dsharlee
Posts: 11
Joined: Dec 2009

I'm currently 10 months after my GBM diagnosis and still undergoing treatment and doing "okay", but I can totally relate to your question. I've had extended discussions with my husband and sister about what to do as soon as it appears I am in the final stages, and I think many of us GBM patients have great fear of exactly what you describe - continuing to hang on, despite being at the end.

I admire you for asking the question and I would only suggest that you discuss this in detail with the hospice social workers. I would hope that you're not still treating infections, or providing any treatment other than comfort measures.

Does he have pain? Are the hospice nurses providing sufficient pain medication?

Debbie

ryc
Posts: 4
Joined: Apr 2010

I am so glad that you are doing "okay". I know that can mean so many things and I wish you and your family the very best. The main belief that has gotten us through this is "it could always be worse."

Hospice has been great. Thier top priority is keeping him comfortable and at this stage that is all we are concerned with. He does not have much physical pain and gets annoyed with us for as much as we ask him.

Panamagirl
Posts: 11
Joined: Jan 2010

I am sorry you are going thought this. January my mother passed with GBM. I can explain her story maybe that will help.

Mama was talking to my sister and the words just did not make since so she ask to speak to our step dad she told him it sounded like she was having a stroke the way she did not make sense. Mama went to the ER she was in the hospital for a little over a week told it was brain cancer then stroke then confirmed it was GBM on November 2, 2009.

The next few weeks we spoke to her and she said she knew what she wanted to say but she could not make the words come out. She was to have 15 radiation treatments was only able to get through 8 before they said we cannot help her. The first for she was able to walk into the clinic the fifth and sixth she was able to walk with assistance the seventh a wheelchair and the last one she had no strength to stand and we dropped her tryig to get her in the truck to go for her treatment.

By now it is the morning of January 5, 2010 I called to see how things were and my step dad said he was completely exhusted so I drove up not knowing what to think she was still able to talk to her and she seemed okay from what she would say to us.

When I arrived she was sitting on the couch and I was told she was now wearing diappers I was shocked. I had spoken to my step dad about Hospice when the time came not knowing the doctor that day I arrived had already told them it was time.

Mom talked to me when I got there and said she would sleep on the couch that night but what she really did was lean over on the arm of the couch and slept off and on. On Wednesday I realized he was lifting her for the potty chair so that day we had Hospice come in and I can say ABBY Hoapice in Georgia is tops in my book and from others in other areas they comment how great Hospice is so please anyone reading this call them it makes a world of difference not only to your loved one but the support they give you is hard to discribe.

Mama would not slept in the hospital bed that night and did not want them bathing her however by Thursday afternoon we were able to pursuade her to sleep in the bed. I stayed on the love seat next to her to give water when she ask. Several time she would talk to my brother who passed two years earlier. Hospice told me I did not have time to go home and come back and told me the signs to look for and each sign came just as they said it would.

I'm sorry if this is hard for some hpwver I hope my details help those who want to know the How Much Longer and the What Can I Expect and those afraid to ask. The Hospice website is a great place to search as well.

Friday she was not able to get out of bed and we started the morphine and my mind is blank of the other drug it was to keep her calm. She would make noise to get water. We felt that she might not be able to see us but we knew she could hear us because she would try and respond.

The nurse told us Friday she would not last the weekend she did and on Monday she went to meet her family and friends who went before her. She had her eyes closed and when she took her last breath she opened her eyes as if to say goodbye for now. A little tear dripped from her eye as we closed them.

Mama was there when I took my first breath and I was there when she took her last.

So to answer the question go to the hospice website and you will find all the information you will need and then watch for the signs you will know the closeness by the signs. Look for them for your answer to How Much Longer.

God Bless You and your family as you enter this side of the illness. I'm here if you would like to ask me questions. I had no one to ask at the time and did not know about this site.

ShowMeFellow
Posts: 18
Joined: Jan 2010

How much longer? Boy,... I wish I knew.
But then again, maybe I'm better off not knowing.
Diagnosed a year ago,... surgery and radiation/chemotherapy,...
...now on standard protocol 23/5 Temodar.
My morning prayer is
"Thank you, [God], for giving me another day.
Maybe this will be the day I find out why."

Ted

Panamagirl
Posts: 11
Joined: Jan 2010

I pray that you will find the "why" you need as well. I look at this site and I just cannot fathom the number of individuals with cancer and then the thought of how many more that have not connected to this site.

Why,have they not been able to find a cure, why so many types, why some and not others, why children, why mothers and fathers, why so many things so yes I do pray you will hve the why before long.

Ted keep you head up and keep looking for that why and i will pray for a cure as well as the why.

niallsmum
Posts: 3
Joined: Mar 2010

Ted, I wish you all the best. Reading you post made me cry for the first time since my son was diagnosed with Astrocytoma (Grade 3) 16 months ago. I was unable to cry and felt 'hard'. Thank God for your words, for my tears. God bless you.

ShowMeFellow
Posts: 18
Joined: Jan 2010

niallsmum,...
Jim Valvano -- legendary college basketball coach and
founder of The V Foundation for Cancer Research (please google, him and it) --
said we should each of us (residents of Cancervivorville)
do three things each day:
we should LAUGH -- find something fun and funny and have a good laugh;
we should THINK -- plumb the depths of your mind, spend some time in thought; and
we should CRY -- let your emotions be moved to tears.

And if I can nudge some one of us a little in any of those directions,
maybe that's enough "why" for me.

It sure enough makes my day worth getting out of bed in the morning for.

Ted

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