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Bob Whyte #89551 02-05-2009 03:33 PM
Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,506
Likes: 2
Sue
You are a wonderful wife, mother and caregiver. Neil is very lucky to have you by his side. Please dont lose faith. I know this is awful for you and your family. Maybe Neil is fortunate not to know everything right now. He is a very strong, proud man, just remember that. Im sending lots of prayers to you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Cookey #89571 02-05-2009 07:40 PM
Joined: Jun 2008
Posts: 475
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Joined: Jun 2008
Posts: 475
It is the hardest and saddest day when you have to watch someone you love lose their battle. It did come to a point when my brother was dying, that I wished it was over. I felt guilty for thinking that. I couldnt bear sitting next to his bed where he was fully sedated, not knowing I was even there holding his hand, and just waiting for him to die. I knew it was going to happen and when it did, I felt relieved, not just for me, but for him. He was no longer suffering, he was no longer hooked up to machines.

It doesn't make it easier, because now you deal with the loss. But in the end, I know we took care of him, loved him and stood by him until the end.

Sue, you have shown so much strength and courage, probably more than you think you had! His life will become an inspiration to you and your family. You will have even more strength and courage!!

Take care of yourself . . . I am thinking of you all.

Susan


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
Bob Whyte #89572 02-05-2009 07:48 PM
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
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Posts: 2,219
Sue,

I feel so lucky that I got to meet you and Neil last fall at Susan's walk. You are both such strong people. I am sorry to hear what you and Neil are going through. I am glad to hear that he is not in pain and I'm sure he knows how lucky he is to have you as his caregiver and loving wife.

You, Neil and your entire family are in my prayers.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 15 year survivor.

"Whatever doesn't kill me, makes me stronger"
wilckdds #89588 02-05-2009 09:43 PM
Joined: Nov 2005
Posts: 1,128
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I hope in all this concentration on the cancer victim and his plight, you don't lose sight of the fact that when that part is over, the rest of your life begins -- I hope you are getting some therapy now for yourself and not just putting it off until afterward -- It will help you get through this part on a more even keel.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #89592 02-06-2009 05:01 AM
Joined: Jan 2008
Posts: 706
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Posts: 706
I came home emotionally spent last night and came to this site for some help and that's exactly what I got after reading all your posts. Thank you all so much. I'm very anxious at night because I hate to leave Neil when he feels most vulnerable even though he had an aide that stays in his room with him. She is very nice and last night i found out how capable she is. She saw a pill in his mouth that the LPN had given him but he didn't swallow as it was stuck. That woman probably saved him from choking on it later. Needless to say i felt better that she was there. I guess we have to take our victories whever we can find them.

Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
suemarie #89603 02-06-2009 06:38 AM
Joined: Sep 2006
Posts: 1,334
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You sound more relaxed. As much as can be expected at this point anyway. I'm glad to hear you have found some competent help to ease your load. Know we are all thinking of you and praying for you each day.


Donna


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
Pandora99 #89654 02-06-2009 04:54 PM
Joined: Apr 2005
Posts: 2,676
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Dear Sue, All along, we have talked about the fact that you are strong enough to meet whatever challange has been asked of you AND you have proved that daily. Hopefully, Hospice is keeping him as comfortable as possible. Wish I could be there to hold your hand -- please know you and Neil are in my thoughts and prayers. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
JAM #89660 02-06-2009 06:40 PM
Joined: Dec 2006
Posts: 147
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Sue - my thoughts and prayers are with you and your family. Take care of yourself....Paula


Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
Joined: Aug 2008
Posts: 113
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I don't know where to start. I've been crying for 24 hours. I can't stop. So much for being strong. I'm crying because he is suffering and depressed. I'm crying because I'm going to miss him. I have so much to say and so much has happened this past week. When I look at him, I stare at him. I look at him and he is not the same man that he was a year ago, not even two months ago. What about tomorrow, I wonder ? Can I get through all of this, I wonder ? Should I put him through more Erbitux and then the cyber knife ? How do I know when he's had enough ? He sleeps most of the day away and only taking 1500 calories thru the Peg. How do I know when I need hospice ? He is still able to walk from bed to chair and watch TV. He can't talk because the cancer is now in his jawbone. I had a scare Weds evening, the day of his Erbitux treatment and had to call the ambulance. I knew he was up and I was waiting for him to walk down the hallway. He never came. I walked into the bedroom and he was laying on his back with his legs dangling. He couldn't walk and he was wetting himself. His blood and urine checked out okay and he was discharged. I thought it was due to the Erbitux as it was his first treatment, but the doctor said that it wasn't and thought that it was probably the "I.V." that they give him before the treatment. Can't think of the name right now. Think it began with a "D". I try not to cry in front of him, but I did last night and he said to me "I know I'm dieing"....His mom lives with us and she had 3 sons. Two have passed (so sad) and now she has to see him so sick. I wonder what he's thinking ? I don't ask because I'm afraid of what I might hear. I hate this disease..........I want to scream ! he was so active, hard worker and built us a beautiful cabin overlooking the allegheny river. That place was his life. He worked so so hard and now it's like a memory to him. would I ever be able to go back there without him.? Why do I act like he is gone ? He is still living. I'm really having a difficult time and still sobbing while typing this. I'm sure it's all jumbled up and makes no sense whatsoever--------and I'm sorry. Even though I have a wonderful family with lots of siblings and lots of support, I try not to cry in front of them and kinda hide my feelings, but here I LET IT ALL OUT.....Love you all. Claudia


Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
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Claudia, I'm new here and haven't posted very much compared to others. Your post is so heart wrenching and has touched me deeply. I know other caregivers on the forum are shedding tears over what is happening to you and your husband. Do the doctors' think this treatment will give him more time and a remission? What are the actual odds of this working? I don't know what my husband would do under these circumstances, wanting to do everything possible, but only if there is a good chance of survival.
Can you get him to your cabin? To look over the Allegheny river from a home he built out of love with his God given talent seems like it would be so comforting. Even with a big family, the caregiver is still alone with the worry, love and responsibility to get everything done and keep it together for our loved one. Please keep posting and let it all out. You are making plenty of sense and I, too, would be crying on the inside and out from the hurt, frustration, exhaustion and sadness... Geri


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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