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cmcd
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Joined: 20 Jun 2008
Posts: 29
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 Posted: Tue Nov 25, 2008 9:00 am Post subject: Hope Disappearing |
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I will not go into all of the details due to the length this topic could be. My BIL was diagnosed with GBM IV May 2007. He has traveled the chemo and radiation road as most GBM patients have. After Avastin/CCNU Duke put him back of Temador. There was new growth and he was put back on Avastin. After a month Duke did not get the results they were looking for and he has been put on VP-16. He was supposed to recieve this last Friday and as of this morning he still has not recieved it. His mind set is that Duke has given up on him and he is losing HOPE. He is treating my sister differently. A mean streak and is spending more time working. He told my sister that he is getting tired and he is giving up. She is beside herself because she doesn't know what to do. Can anyone give me information about how this happens? As a patient and a caregiver what have you done to keep the HOPE?
Again, thanks to all of you and prayers go out for each of you.
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Anguss
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Joined: 10 Sep 2008
Posts: 38
Location: England
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| Posted: Tue Nov 25, 2008 1:16 pm Post subject: Re: Hope Disappearing |
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Wow that's a hard one. I think you have to stay hopeful, but also you have to stay realistic so that you don't set yourself overly-false expectations with this unbelievably aggressive disease. It's a true balance and it's not easy being realistic when all you want is for a miracle to happen or to bury your head in the sand.
For the sake of the person suffering, you have to be as upbeat for them as you possibly can be. You have to try to make the most of every single second you have left with them and be there when they need you to be. There is no easy route and no easy answer, but amongst all of the angst that your family is experiencing, there may still be moments of beauty to come which you will be able to look back upon and savour.
Thinking of you x
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cmcd
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Joined: 20 Jun 2008
Posts: 29
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| Posted: Tue Nov 25, 2008 2:39 pm Post subject: Re: Hope Disappearing |
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Thank you so much. You are right about being realistic. Duke told them last week that the were not giving up; that there were more opportunities available. I know I have to be upbeat and as caregivers everyone knows some days that is hard. I see the deficiencies and know this ugly disease is working constantly to win this battle. I had lunch with my sister and she is trying to come to terms with his actions knowing this isn't his nature.
Please keep us in your prayers and I will do the same to all of us traveling through this delima.
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Anguss
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Joined: 10 Sep 2008
Posts: 38
Location: England
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| Posted: Tue Nov 25, 2008 2:44 pm Post subject: Re: Hope Disappearing |
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From what I've seen, anger is part of the whole process. It's understandable I guess..... it must be very hard for any person to come to terms with this kind of diagnosis and I think I would be very angry if it were me. However, I think physiologically some of the medications - especially the steroids - can have this affect on the person too. My mother - the most placid person I ever knew whose moto was "if you can't say anything good, don't say anything at all" - became very angry and outspoken for a while there! We hardly recognised her!
Stay strong. Lots of love x
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ennis
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Joined: 19 Nov 2008
Posts: 37
Location: warrington england
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| Posted: Tue Nov 25, 2008 2:46 pm Post subject: hope disappearing |
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I am so sorry to hear that your BIL may be giving up hope. how hard that must be for your sister.my family is only just beginning our journey with this soul destroying ,heart wrenching illness.my grandson,marc,now has his appointment for the radiation mask(thursday),and hopefully radiotherapy and chemo will start next tuesday.when I read the journeys other people have been on I only hope I can find the strenght for myself and also to instill strenght in the rest of the family.
my prayers are with you and your family.
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live in hope
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5984
Location: Tennessee
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| Posted: Wed Nov 26, 2008 4:22 am Post subject: Re: Hope Disappearing |
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Hi Charlene. I am so sorry to hear that your BIL is starting to give up hope. He has been such a fighter for over a year and a half. That is remarkable! It is also the fount you should try to tap to help restore his Hope. Nevertheless, Hope is something that you cannot great in someone else; you can only nurture it as much as you can. I have often told patients who told me they had no sense of hope anymore that I would hope for them until they could hope for themselves. I was hoping to communicate that I had not yet given up.
His relationship to his wife and mean streak may be caused by several things. The cancer itself can directly affect moods. Having cancer can also cause a person to get depressed and moody. It sounds to me like he is depressed. Make sure his medical team knows about this. There are some good antidepressants he could try.
You and your BIL are in my thoughts and prayers.
I added two links to your signature block so others can find the rest of your BIL's story.
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Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
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cmcd
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Joined: 20 Jun 2008
Posts: 29
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| Posted: Wed Nov 26, 2008 6:28 pm Post subject: Re: Hope Disappearing |
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Thanks Brainman, you always have an answer. You are right in that I can have his hope until he comes around. He was much better today. He started VP-16 yesterday. We all know the chemo is his life line and without it he feels the doom.
I have tried to get my sister and BIL to seek counseling but to no avail at this time. They need a mediator to help with this process. Their medical staff have been wonderful. They always answer questions and encourage but with the Holidays they were not as available.
Thanks for this site and your continued support for all that use it. It is a job well appreciated. Prayers and a bear hug to you.
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ksplat
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Joined: 26 Apr 2007
Posts: 576
Location: Brisbane, Australia
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| Posted: Thu Nov 27, 2008 5:47 pm Post subject: Re: Hope Disappearing |
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Dear Charlene
I too am sorry your BIL has been in such a "dark" place recently. At least he has now started on the chemo again (his lifeline). This journey is certainly challenging at every level & of course keeping "faith & hope" is a key to managing the emotional roller coaster.
My Bro's wife Kath as the primary carer was constantly in the "firing line" with our Mark & his battle. Being the closest person to him she copped the anger & frustration. We all saw it & recognised it & all I could do to support her was to acknowledge she was in this difficult position. She was teary eyed constantly during my visits with Mark's tongue lashings & bad attitude to her, of course we were all trying to support Mark through his ordeal & illness. I felt I needed to say to Kath I can see the dynamics have changed & I can feel your pain & hurt too.
As for counselling I tried several times to initiate some professional help for them, mainly through the hospital whilst Mark was recovering from his many surgeries. Mark & Kath too were never inclined to take up counselling but did feel they were sufficiently nurtured & counselled by the medical staff who were looking after Mark & of course they were wonderful people all of them!
We found hope in the many small achievements & progress Mark had & in the love & support from family & friends. For myself coming to this forum gave me hope, love & support in bucketloads.
You & Yours are in my thoughts & prayers.
Cheers, Angie.
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Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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cmcd
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Joined: 20 Jun 2008
Posts: 29
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| Posted: Fri Nov 28, 2008 6:31 pm Post subject: Re: Hope Disappearing |
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Angie, I knew there was someone on this forum that has to be the rah-rah team that saw and felt helpless during this family disease. My sister has been much better this week with the Thanksgiving holiday and family all around. I am usually the one to pick up the slack and believe me I don't mind; that's my job as big sister. All of my siblings and Mother were together yesterday. We all saw the deficiences and kept most upbeat ever. My grandson's, from Nashville, TN, brought such pleasure to my sister and BIL. They have never had children and think the world of them. My BIL will complete the VP-16 on December 15 and will have an MRI then. They are terrified of this MRI.
[color=red]Brainman[color] I past on your thoughts to my sister and they were very much appreciated.
Thanks for your support and prayers.
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Gillette
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Joined: 15 Oct 2008
Posts: 357
Location: Old Orchard Beach, Maine
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| Posted: Sat Nov 29, 2008 8:24 am Post subject: hope disappearing |
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I will Pray-
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Kathy: still loving Ben, as he rests with God. |
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cmcd
Regular
Joined: 20 Jun 2008
Posts: 29
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| Posted: Fri Dec 19, 2008 8:32 am Post subject: What Next? |
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My BIL had an MRI yesterday after 23 days on VP-16. The cancer is now 5 cm and there is a midline shift. The Oncology PA told him he has 6-9 months. Duke has not reviewed the MRI. Hopefully that will be done today. Last months visit to Duke there was mention of more surgery. Now that there has been over a cm growth and a midline shift will they still consider surgery?
Thanks for any help with this question.
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brainman
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cmcd
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| Posted: Fri Dec 19, 2008 4:37 pm Post subject: Re: Hope Disappearing |
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Thanks brainman. You are right; Duke has decided against the surgery. My BIL is having deficies in his left arm. Duke thinks it is swelling and not damage therefor they are putting him on steriods. He is still working and is looking into long term disability or ss disability just in case this next round with chemo is rought. He is going on a trial of Avastin, Temador and one other checmo weekly.
Reality has set in. My sister told him to pull out his "Bucket List". They will go somewhere every month until he can not go any longer. I hate this disease. My prayers are with all those effected by this disease. Again, brainman, you are a weath of information.
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brainman
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cmcd
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| Posted: Mon Dec 22, 2008 7:16 pm Post subject: Re: Hope Disappearing |
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You have an amazing way of knowing what is next. Saturday my sister asked me to help her with a small class reunion for my BIL and old school buddies. You bet I'll be there.
The visit to Duke was very long. I am not sure at this moment exactly what happened as they are still on the road home but she said nothing new from Friday's call from Duke. It just took a while to get the infusion started because they were "worked in due to the Holidays". I have been reading a lot on the end of this process. Have you heard of any statistics of the Avastin with other chemos? I am not sure if this will pro-long this or if they do think there is a chance for HOPE. Believe me, at this point I still take this information and use it when I need to. I have read the Hospics web on what happens at the end and it is hard to take but if my BIL gets tired of the feeling bad then I will be there to suggest Hospics.
Once again, thanks. Prayers flood the airways constantly.
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