Here's a working link for brain hospice timeline

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Here's a working link for brain hospice timeline

by BamaDave on Fri Apr 21, 2017 11:34 AM

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Hello all, I see lots of requests for this brain tumor progression timeline: http://www.btbuddies.org.uk/hospice-palliative-care/51-sympt My 80 yo Dad is in his final days of a 21 month battle with GBM. I keep reading the timeline closely. He has been following along with many items on the 5-7 and 2-5 days remaining lists. A word of caution to those who are not as close to the end. My Dad has been doing many of the things on the 3-6 weeks list for months and months. However, the constant falling only started about 4 weeks ago. With this disease, it seems like everyone has a different path and story. The brain is very complicated to say the least!

RE: Here's a working link for brain hospice timeline

by wwjdmom on Wed Apr 26, 2017 01:01 AM

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This is about right with what happened to my mom.......but not a thing is similar to 18yo Shania.

Bedridden with blood clots and growth of tentacles into her neck for 44 days. 

No food for 44 days. 

Still talks clearly but sometimes days things that are no longer possible....like heading to college this fall, roller skating, etc.

Please be merciful and bring her to heaven. 

RE: Here's a working link for brain hospice timeline

by Auburngirl07 on Thu Oct 05, 2017 09:48 PM

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Hi, I was looking for someone with the same experiences with GBM. Our really good friend was diagnosed with it in April 2017. They did surgery and radiation with chemo. He seemed to be doing great and was doing his monthly scans. Well, exactly 5 months later, at his scan, it has come back in a different spot (speech area of the brain). They told him that it was inoperable and he had possibly 3 months to live. The radiation oncologist said with 9 weeks of radiation, there is a possibility of extending his life a little longer. That was last Thursday, by Monday, he was throwing up, horrible constant headaches, and his blood pressure was extremely high. The drs called him in some steroids to help with the side effects so he could get to his appointment to get the radiation mask fitted to start treatment. We have seen him a bunch this week and he isn’t the same. He is very emotional and just not himself. He was always pretty upbeat, but all he really says is that his head hurts. Is this the decline everyone was talking about or is he just worried? He has started to say goodbye to his patients at and transfer them to the other dr in his office, and even asked his son to take a leave from Medical school to be there. Has anyone seen this happen before with people with GBM? Thank you for any answers you can give.

RE: Here's a working link for brain hospice timeline

by gilesjenny57 on Fri Oct 06, 2017 01:19 AM

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Thank you for this  website information.  I have been trying to find a website with this information for a while. My hushand (64yrs), to is in his final stages of GBM since June 2016.   He is sleeping an awful lot like I would say upto 20 hours a day.  Says he wants to do things but never seems to happen.  Suffered 2 seizures a month ago and a new tumour has appeared. 

I wish you all the very best with your Dad.  

Jenny

RE: Here's a working link for brain hospice timeline

by Terraserene on Tue Nov 07, 2017 11:53 PM

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Yes, it’s happening to my husband now. The headaches are unbearable but they give him lots steroids to keep swelling out. He can hardly speak or understand and yes he is saying good bye also. He had a clean mri and one month later and GBM grew in the original cavity and tenicals every where else. One treatment of Avastin blew a hole in his colon and had emergency bowl surgery barely recuperating in hospital. They said bad combo steroids, Avastin and some people respond like this.

RE: Here's a working link for brain hospice timeline

by Wastingtime on Wed Nov 08, 2017 08:25 PM

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On Nov 07, 2017 11:53 PM Terraserene wrote:

Yes, it’s happening to my husband now. The headaches are unbearable but they give him lots steroids to keep swelling out. He can hardly speak or understand and yes he is saying good bye also. He had a clean mri and one month later and GBM grew in the original cavity and tenicals every where else. One treatment of Avastin blew a hole in his colon and had emergency bowl surgery barely recuperating in hospital. They said bad combo steroids, Avastin and some people respond like this.
Hi Terra, it's been a long time my friend. This is Carolyn , I have drifted from CC and sometimes I check in. I am very sorry to read about your beloved husband. I know you have been a great caregiver to him . I have often thought of you and your husband through out the months . It seems times goes by so fast . During hurricane season which was really crazy I was hoping you were ok. My goodness your husband has put up such a long long brave fight. I know you have to be exhausted mentally and physically . My prayers go out to you and your family. I am sorry we lost touch , I just have a lot of " brain fog" and caregiving is so hard as you well know. If you would like to talk , I am here ,,,,God bless and much love, Carolyn

RE: Here's a working link for brain hospice timeline

by Terraserene on Thu Nov 09, 2017 02:46 AM

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On Nov 08, 2017 8:25 PM Wastingtime wrote:

On Nov 07, 2017 11:53 PM Terraserene wrote:

Yes, it’s happening to my husband now. The headaches are unbearable but they give him lots steroids to keep swelling out. He can hardly speak or understand and yes he is saying good bye also. He had a clean mri and one month later and GBM grew in the original cavity and tenicals every where else. One treatment of Avastin blew a hole in his colon and had emergency bowl surgery barely recuperating in hospital. They said bad combo steroids, Avastin and some people respond like this.
Hi Terra, it's been a long time my friend. This is Carolyn , I have drifted from CC and sometimes I check in. I am very sorry to read about your beloved husband. I know you have been a great caregiver to him . I have often thought of you and your husband through out the months . It seems times goes by so fast . During hurricane season which was really crazy I was hoping you were ok. My goodness your husband has put up such a long long brave fight. I know you have to be exhausted mentally and physically . My prayers go out to you and your family. I am sorry we lost touch , I just have a lot of " brain fog" and caregiving is so hard as you well know. If you would like to talk , I am here ,,,,God bless and much love, Carolyn
Hi, Carolyn. Glad your still hanging in. This post here was just what I was looking for. Time line. We have hospice starting soon as he’s out. It really explains the crazy stuff that Drs & nurses at the hospital just are trained to observe and respond. We literally had to make sure we were there every change of shift because had to explain why this patient couldn’t tell them he needed pain meds. Brain tumors are just another animal. I thought how valuable to print this out for our caregivers. All of us here at my place. We’ll keep in touch. How’s those cutie pie grandkids?

RE: Here's a working link for brain hospice timeline

by Wastingtime on Thu Nov 09, 2017 03:49 AM

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On Nov 09, 2017 2:46 AM Terraserene wrote:

On Nov 08, 2017 8:25 PM Wastingtime wrote:

On Nov 07, 2017 11:53 PM Terraserene wrote:

Yes, it’s happening to my husband now. The headaches are unbearable but they give him lots steroids to keep swelling out. He can hardly speak or understand and yes he is saying good bye also. He had a clean mri and one month later and GBM grew in the original cavity and tenicals every where else. One treatment of Avastin blew a hole in his colon and had emergency bowl surgery barely recuperating in hospital. They said bad combo steroids, Avastin and some people respond like this.
Hi Terra, it's been a long time my friend. This is Carolyn , I have drifted from CC and sometimes I check in. I am very sorry to read about your beloved husband. I know you have been a great caregiver to him . I have often thought of you and your husband through out the months . It seems times goes by so fast . During hurricane season which was really crazy I was hoping you were ok. My goodness your husband has put up such a long long brave fight. I know you have to be exhausted mentally and physically . My prayers go out to you and your family. I am sorry we lost touch , I just have a lot of " brain fog" and caregiving is so hard as you well know. If you would like to talk , I am here ,,,,God bless and much love, Carolyn
Hi, Carolyn. Glad your still hanging in. This post here was just what I was looking for. Time line. We have hospice starting soon as he’s out. It really explains the crazy stuff that Drs & nurses at the hospital just are trained to observe and respond. We literally had to make sure we were there every change of shift because had to explain why this patient couldn’t tell them he needed pain meds. Brain tumors are just another animal. I thought how valuable to print this out for our caregivers. All of us here at my place. We’ll keep in touch. How’s those cutie pie grandkids?
My friend, you are like a mamma bear protecting her cub and you will protect your beloved husband till the end. I don't know what to think any more. I just do the best I can at the time for my husband and it's not always perfect but I am here with him until this chapter in my life is over. My " Joy" are those grandchildren ,,,thank you for asking about them ,,we added a few more ,,,ages 5, 3, 2, and one month old, one girl and three boys. My husband's daughter gave us a grandson and he is three years old. So yes we have babies now ages " 5 and below " smile,,,,I was with them this evening and I am worn out girl !!!!! My sweet friend, you have been through so much between your husband and your son, but you still charge farward because that's what caregivers do. I hope to keep in touch , I am in therapy as usual, still trying to fix this head of mine, smile,,,,, cancer has done a number on me and my poor husband ,,,,,,,you know I use to be really good on this site but not no more. ,,,,,caregiving , cancer , reports , meds, you know the drill has aged me and slowed me down and I struggle with newcomers for the right words to inspire them . It kills me to see threads under caregiving and no replies but I just don't have it in me anymore . Almost 10 years has taken its toll. Sending LOVE your way , Carolyn Ps. My photo is an art project I worked on with my grandchildren , we had a crazy good time making it !!!! Xoxox

RE: Here's a working link for brain hospice timeline

by Terraserene on Thu Nov 09, 2017 05:28 PM

Quote | Reply

On Nov 09, 2017 3:49 AM Wastingtime wrote:

On Nov 09, 2017 2:46 AM Terraserene wrote:

On Nov 08, 2017 8:25 PM Wastingtime wrote:

On Nov 07, 2017 11:53 PM Terraserene wrote:

Yes, it’s happening to my husband now. The headaches are unbearable but they give him lots steroids to keep swelling out. He can hardly speak or understand and yes he is saying good bye also. He had a clean mri and one month later and GBM grew in the original cavity and tenicals every where else. One treatment of Avastin blew a hole in his colon and had emergency bowl surgery barely recuperating in hospital. They said bad combo steroids, Avastin and some people respond like this.
Hi Terra, it's been a long time my friend. This is Carolyn , I have drifted from CC and sometimes I check in. I am very sorry to read about your beloved husband. I know you have been a great caregiver to him . I have often thought of you and your husband through out the months . It seems times goes by so fast . During hurricane season which was really crazy I was hoping you were ok. My goodness your husband has put up such a long long brave fight. I know you have to be exhausted mentally and physically . My prayers go out to you and your family. I am sorry we lost touch , I just have a lot of " brain fog" and caregiving is so hard as you well know. If you would like to talk , I am here ,,,,God bless and much love, Carolyn
Hi, Carolyn. Glad your still hanging in. This post here was just what I was looking for. Time line. We have hospice starting soon as he’s out. It really explains the crazy stuff that Drs & nurses at the hospital just are trained to observe and respond. We literally had to make sure we were there every change of shift because had to explain why this patient couldn’t tell them he needed pain meds. Brain tumors are just another animal. I thought how valuable to print this out for our caregivers. All of us here at my place. We’ll keep in touch. How’s those cutie pie grandkids?
My friend, you are like a mamma bear protecting her cub and you will protect your beloved husband till the end. I don't know what to think any more. I just do the best I can at the time for my husband and it's not always perfect but I am here with him until this chapter in my life is over. My " Joy" are those grandchildren ,,,thank you for asking about them ,,we added a few more ,,,ages 5, 3, 2, and one month old, one girl and three boys. My husband's daughter gave us a grandson and he is three years old. So yes we have babies now ages " 5 and below " smile,,,,I was with them this evening and I am worn out girl !!!!! My sweet friend, you have been through so much between your husband and your son, but you still charge farward because that's what caregivers do. I hope to keep in touch , I am in therapy as usual, still trying to fix this head of mine, smile,,,,, cancer has done a number on me and my poor husband ,,,,,,,you know I use to be really good on this site but not no more. ,,,,,caregiving , cancer , reports , meds, you know the drill has aged me and slowed me down and I struggle with newcomers for the right words to inspire them . It kills me to see threads under caregiving and no replies but I just don't have it in me anymore . Almost 10 years has taken its toll. Sending LOVE your way , Carolyn Ps. My photo is an art project I worked on with my grandchildren , we had a crazy good time making it !!!! Xoxox
Carolyn, let me start a new thread under Caregiving. That way we can talk. Love you

RE: Here's a working link for brain hospice timeline

by BamaDave on Thu Nov 09, 2017 11:08 PM

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Prayers to all for your continued caregiving and experiences.  My Dad did pass away on April 30th after a long decline. The timeline did give me a good idea about what to expect, although not everything matched.  He was strong physically before the end, and he lived almost 11 days with no fluids before he passed away.  He slept almost that entire time with only rare moments of being awake. Everyone's journey with this disease is different.  In the end, I think we made the best choices for Dad and his quality of life, and he never complained of any pain all the way to the end.  

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