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#33151 01-28-2004 03:12 PM
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Deneen Offline OP
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I found this web site too late in fact we found everything too late. My close friend and brother of my best friend is dying at age 45. He didn't seek treatment until his tongue was so swollen, he couldn't talk or eat. It all seemed to happen so fast. He is a bachelor and it was nothing for us not to hear from him for a month, when we didn't no one questioned it really. By the time anyone, including him, found out it was too late for a cure. His MD decided to treat with radiation and chemo simultaneously for 6 weeks, I can't beleive that didn't kill him. His tumors shrunk dramatically and even went undetected during an exploratory surgery in November. By Chrismas Eve his cancer was back and this time spread to his lungs and brain. His organs have begun to shut down and they tell us it will be any day now. The hardest part for me and his sister is that he hasn't been able to speak through all of this. He trys to write but has a hard time with all the jerking his muscles are doing, in the last few days he hasn't been awake much. I know I need to say goodbye and to tell him how much laughter he has brought to my life. I'm not even sure why I am writing this, I'm too numb to talk. I want to be there for him and his family, it is so hard guessing what he would want to have done. I've read of a surge of energy, do any of you have experiences with this, when does it normally occur? His sister is scared she will miss this surge, I can't even break it to her that not all people have one.

#33152 01-28-2004 07:16 PM
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Deneen,

I was so sad to read your post. But, I just wanted to say that the people in here can give great support to you. I just registered last week. My mom has gum and jaw cancer and I am watching her suffer. I lost my grandmother to cancer also and it was hard for me to say bye and let go. But, I felt better doing it. You have to do what is in your heart.

I wish I could be of better help. But I just wanted you to know that you and your family are in my thoughts and prayers. You are not alone.

God Bless
Stephany


Stephany.Daughter of mother who passed away 3/26/05 from Recurrent Gum Squamous Cell Carcinoma. She had 3 surgeries, and 6 weeks radiation, and then passed due to infection. I miss her very much. She was 65 years young when she passed. Love you Mom!
#33153 01-29-2004 07:03 AM
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Dear Deneen,
When my father dying of lymphoma, we often shared that we loved each other and I can't stress enough how much of a difference that made during and afterwards. In contrast my mother died suddenly of a massive heart attack and I really didn't get a chance to talk to her. It is important to tell people how you feel while there is still time or you will go through life regreting that you didn't. This really applies to any relationship in life because none of us really know when our death is going to occur.

About treatment. Many times palliative treatment is given to extend life and/or treat some of the painful symptoms (like a tumor pressing on nerves or other organs). It could resemble a full course of radiation and/or chemotherapy but the intent is not to cure the disease, only to mitigate suffering. Of course, it in itself, is a difficult treatment as you know. His cancer probably had never left.

I am not sure what the "energy surge" is that you refer to. Some people want to be there at the exact moment of death to experience the "spirit leaving the body" or a so called light, whatever that is. More often a person just takes a last breath, sighs, and that's it. My mother-in-law was a hospice volunteer worker for many years and that what she shared with me. Some people have related to being very blessed by being there at the exact moment of death, others might be burdened by the sadness of it - it is a very individual thing.


"There is no more urgent and critical question in life than that of your relationship with God and your eternal salvation" (Billy Graham)


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#33154 01-29-2004 08:00 AM
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Deneen,

my thoughts are with you and your fiends.

cu,
larryb

#33155 01-29-2004 12:58 PM
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Hi Deneen,

Sorry to hear about your friend's brother and your best friend. I can't say anymore than Gary
hasn't already said. He has a gift for writing that makes me think he could be a author. Please know there are many members of this forum who will read your post and offer support or prayers.

The only thing I can add is it would be nice if we treated people better everyday not just when tradegy strikes. Please keep us posted on your friend.

Sincerly, Dan Bogan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#33156 01-29-2004 12:59 PM
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Deenen,

First I want to express my deep found sadness after reading your post.I am going through something similar with my father in law.He has more time than your brother but my family and will be facing what you are in a few months.

It isn't fair when you have to express all your feelings for someone in a few days,that it took a lifetime to build.I wish you and your family peace in this very difficult time.If you need to vent please feel free to email me.

God Bless You,
Patty frown


Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004
#33157 01-29-2004 04:19 PM
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Deneen,

As far as a surge of energy, I guess that would describe what my daughter had. But it was at the very end, literally in her last couple minutes of life. There was no prior indication that this would happen. So I don't think there is any way you could know if and when it might happen. It also may not be as much as you expect. For what it's worth, here is what happened.

Like your friend, Heather also couldn't talk. Plus she had a spinal tumor which had left her paralyzed. All she could move in the last several days of her life was her head, actually only her eyes in the last day or two. In the last moments of her life, though, somehow she came up with the strength to squeeze my hand a few times. This action was in response to the hospice nurse talking to her. Heather was heavily sedated when the nurse noticed the signs of impending death, a change in her breathing, etc. So she was telling Heather in a clear, somewhat loud voice that it was alright for her to let go if she was ready. We told her that she didn't have to worry about her daughter, that she would be taken care of. And that we loved her and would miss her, but we knew she needed to go so she could be free of pain. I think squeezing my hand was her way to let us know that she heard and understood us. To be able to move those muscles, Heather had to have had a tremendous surge of energy. This of course is only one experience and there is no way to know what, if anything, your friend will experience.

I have been told that hearing is the last sense to shut down. The nurse said that even while sedated and seemingly asleep, sometimes a person can still hear. That is why when she talked to Heather, it was in a loud, clear voice. I would suggest that you go ahead and say your goodbyes to your friend in the same manner. Even if he doesn't respond, he still may be able to hear you. Just holding his hand and telling him how much his friendship has meant to you would be soothing not only to him, but to you as well. Touch can be very powerful. I hope this has helped to answer your question a little. I am just so sorry you all have to go through this. You have my sympathy.

Rainbows & hugs, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#33158 01-29-2004 05:16 PM
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Dear Deneen,
What a tragedy that you are going through. My heart breaks to think of it. I agree with Rosie......he can hear. Just tell him that you love him and that you are there.
God bless you and give you peace
Judy U


Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
#33159 01-29-2004 06:26 PM
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Deneen,

I too am so sorry to hear about your friend, this is one of the tougher parts of life, dealing with a friends imminent passing.

Many hospice publications on death and dying write about the pre-passing energy surge. It's been a long time since I read the information but if I remember correctly is something to do with the person's spiritual need to gather strength for the journey, and also to say goodbye to loved ones if possible. The image I get is something similar to the hollywood deathbed scenes, where the dying person speaks to his relatives one last time.

Thing is it can be anything from one last deep breath if the person is in a coma, to actually a more alert state of conciousness, depending on the patient. Problem is, it can't be predicted, especially if the patient is in a coma.

Thing is to be there for him and his family, talk to him, let him know your feelings.


Again, sorry to hear about all is happening, God Bless and take care
Bob S.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#33160 01-30-2004 04:45 AM
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Dear Deneen,
My thoughts and prayers are with you. I agree with the Billy Graham quote from Gary. God is here with us in our spirit and truly believing in Him gives us the hope that we will be in Heaven with God in our passing.

It says in John 3:16 "For God so loved the world that He gave his only begotton so that we may not perish but have eternal life"!

Death here is very hard to understand the "whys" of it all, but trust in and accept God and you both will have the strength to endure. I keep telling myself that everyday as we struggle on thru this journey being unsure how it will turn out.

It's so good to get the support we do from the board...I know it sure helps me thru the tough times!!
Thanks,
Debbie


Debbie/Caregiver/wife of Dan, diagosed with SCC tongue, Stage II/III, 1/3 tongue removal, lymph node dissection both sides of neck, skin graph 7/30/03. Left tumor found - radical left neck dissection 12/24/03. Could not get all of tumor/wrapped around carotid artery and in wall of jugular. 1/12/04 beginning of 6 doses of Taxol/Cistoplatin once a week, and rad 70 gray 5 days a week/6 weeks.
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