Glioblastoma new diagnosis

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RE: Glioblastoma new diagnosis

by dee2016 on Thu Mar 16, 2017 08:23 PM

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am sure it must be so frustrating for you to stay positive when you see him this way..am so sorry and its horrible because am sure you feel so helpless and limited in what you can do to help him....my husband is lucky enough that he can still talk...he does have a little visual problem too but can still see good considering what he has been through these past few months...will pray and light a candle for you and your husband ...take care

hugs

RE: Glioblastoma new diagnosis

by Chicagogirl on Sun Mar 19, 2017 03:51 PM

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i am heartbroken for you both.  my husband and I wanted to travel while he was feeling good....our brilliant (and i am not being sarcastic-truly brilliant) oncologist did not think it wise.  His family was againtst it.  so, we did not.  He was in relatively good health for 10 months.  not doing what WE wanted to do is such a regret of mine.  that we did not use our autonomy as a couple married for 17 years.  maximize your relatively healthy time...my humble advice to you.  my husband survived 15 months.

i will pray for you both

RE: Glioblastoma new diagnosis

by Littlemonica on Sun Mar 19, 2017 05:24 PM

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I'm so sorry to hear about your husband, I feel your pain. I took my husband to the Dr yesterday, they wanted to start chemo tomorrow but because he has decompensated so much in the six weeks since diagnosis and two surgeries they want to do another scan to see how far the tumor has progresses. Dr advised our decision after the scan tomorrow will be do we want to move forward with treatment and make him sick and miserable or withhold treatment and let the disease run its course, it's so hard, I can think, I'm barely holding it together. Big hugs and much luv and prayers for everyone, you are not alone.

RE: Glioblastoma new diagnosis

by dee2016 on Mon Mar 20, 2017 08:52 PM

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hi chicagogirl

we have talked about going away after this initial treatment which starts tomorrow...hub is obviously not looking forward to this and is probably scared because we dont know what is ahead of us...so talking about travel and holiday is a good thing keeps him going, so yes i will be taking your advice and maximising any healthy time he has...am so sorry for your loss and hope you are coping and have support through this.

hugs

dee

RE: Glioblastoma new diagnosis

by dee2016 on Mon Mar 20, 2017 09:00 PM

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hi monica

am so sorry to hear your news and how fast things have escalated since your husband's diagnosis...that is a very hard decision to make but hopefully you will have support to give you good advice when making that decision...a difficult time for you both indeed and can understand how hard it is to hold it together for your husbands sake...its enough for them to worry about what is happening to them without worry why we are crying...be as brave as you can be and my thoughts and prayers are with you both during this difficult time

hugs

dee

RE: Glioblastoma new diagnosis

by hopepraylove on Mon Mar 20, 2017 09:07 PM

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On Mar 20, 2017 9:00 PM dee2016 wrote:

hi monica

am so sorry to hear your news and how fast things have escalated since your husband's diagnosis...that is a very hard decision to make but hopefully you will have support to give you good advice when making that decision...a difficult time for you both indeed and can understand how hard it is to hold it together for your husbands sake...its enough for them to worry about what is happening to them without worry why we are crying...be as brave as you can be and my thoughts and prayers are with you both during this difficult time

hugs

dee

Monica, This is one of those messages where I want to say I care about you and I am sorry for the pain you are in, but those words seem so empty. But they are all I've got. Sending you virtual fortitude across the miles from Miami, Florida. Warmly, Christi

RE: Glioblastoma new diagnosis

by Littlemonica on Tue Mar 21, 2017 12:22 PM

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Thank you both, I appreciate your thoughts and prayers. It gets worse everyday, he had a brain and Spine scan yesterday because of how much he has declined in six weeks imagine where he might be in another six weeks and do you want that six weeks to be sick and miserable. Dr said we should think about do we want to move forward and start treatment or let the disease run its course but he also said the shunt isn't working right so fluid is building up again and they may need to do another procedure on him, why put him through another surgery if I should be thinking about with holding treatment. I am so mentally, physically and emotionally exhausted. I break down every time the Dr calls because I know it's more bad news, it does help to vent and discuss with folks that can relate to your experience. Peace and love

RE: Glioblastoma new diagnosis

by dee2016 on Tue Mar 21, 2017 09:03 PM

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Hi Monica

gosh you really are having a terrible time with all these decisions to make...what does your husband feel, does he have any strong feelings as to what he wants to do?  do you have much support from family to help you through this?

stay strong hun

hugs

dee

RE: Glioblastoma new diagnosis

by Littlemonica on Tue Mar 21, 2017 10:01 PM

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I hate to be all doom and gloom but it's been a true wide awake nightmare. Unfortunately he can't participate anymore, he's so confused and totally non-communicative at this point. I'm sure he doesn't know what's going on anymore, I only have what I know in my heart because of conversations we had as husband and wife and his last will and testament. I have lots of family support but it doesn't make it any easier. Thanks again for all your support, for listening and for caring.

RE: Glioblastoma new diagnosis

by hopepraylove on Wed Mar 22, 2017 04:00 PM

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Sigh. Be kind to yourself. Let your family help - don't try to do it all on your own. Be kind to yourself. There is no "right" or "wrong" in these decisions. Trust your heart and instincts. Be kind to yourself. (Yes, I know I said it three times.) Virtual hugs from Florida, Christi
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