#93904 04-19-2009 07:37 AM | Joined: May 2008 Posts: 24 Member | OP  Member
Joined: May 2008 Posts: 24 | Hello,
I've posted a number of times regarding my husband Kyle. He's 43 and has been on his death bed for a couple weeks now. I've dealt with everything fairly well until these past few days. The more time he hangs in there the more it breaks my heart. To see how strong he is and his will to survive in such a hopeless situation just breaks my heart. The hospice nurses told us for over a month it will be any day now, any day now. She finally apologized and said she isn't going to say anything anymore. He's breaking all the rules. He is on 24 hour nursing care. He has not had any Jevity feedings in 20 days (these were his wishes when he reached this point), he's been taking 5 breaths a minute for 4 days now, his heart is still going strong, etc.. He has 7 tumors on his neck and 1 on his chest. Who knows how many are inside his mouth. The odor gets overwhelming at times. I feel bad when I lean in to kiss his head or whisper in his ear and the smell gags me. I even feel bad writing this now. I love him and it's so unbearable to watch him suffer. I sit with him for awhile and then I have to come downstairs to see my kids or just get away. I know the odds are high he will pass away with me not in the room. I know it's selfish but I just can't stay in there all day any longer. His family has sort of checked out (they hardly checked in in the help department ever!)and only come by every 3-4 days now to visit for an hour or so. I wondered through the house yesterday looking for something, picking up my phone and putting it down. I finally figured out what I was doing. I was searching for Kyle so I could talk to him about how awful I was feeling. He's been my bestfriend for 18 years and he's who I always went to when I needed to talk. He's now the one I need to talk about and he's no longer there to talk to. This is going to be a terrible year missing him. Thank you for listening.
Tamara
Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Tamara,
My heart is breaking for you...I am so sorry this is so hard and you are alone. You did the right thing by coming here to vent and get some emotional support. I just can't imagine that your family has not been more supportive...I just don't understand that.
Please know that all of us here are thinking of you and Kyle and sending strength and hugs your way.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Tamara,
I am so sorry for what you are going through. Given what you've said, it really will be the last day soon. Kyle is obviously young and healthy in some ways (his heart) and the ability to hold on can be amazing. Have the hospice nurses talked to you about any ways that you might talk to him about it being ok to let go? My thoughts are with you.
Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Tamara - Feel free to come in any time and talk to us - hopefully, we can offer you comfort in that you are not alone.
Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Tamara, my heart aches for you. I am so, so sorry you are going through this. My mom died at home from Pancreatic Cancer and was on hospice care for the last 2 weeks. She didn't eat anything for 21 days before she died and didn't drink anything for almost a week. The human will to survive is very, very strong. I used to sit with her, hold her hand, stroke her hair and tell her "it's o.k. to go, we will be o.k. and take care of dad". I read "somewhere" that telling your loved one it's o.k. to go helps them to pass on. I know once things get to this point you just want all the suffering for everyone involved to be over. If you just need to chat with someone, feel free to PM me. I am so, so sorry. Hugs, Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Tamara,
My heart goes out to you. I'm so very sorry that you are going through this. I know talking via this forum is different than talking in person but we are here for you. We are all here to support to you. Please vent and talk to us whenever you need to.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Tamara,
I am praying for you and your family. I'm so sorry. I can't imagine how difficult this is for you. Please know that we are all here for you.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Tamara- I know exactly what you are going through and really can't offer too much advice other than to spend as much time as you can with Kyle, remembering the good times. It will be over soon and you will know that you did what you could to make his last days special. Unfortunately my husband passed after I had left for the evening. The aide that was with him told me that she thought he waited until I was gone. I had been there day and night just hoping i was there when the time came but he had his own agenda. I had only gone home becuase my 14 year old was home alone. Just know that his suffering WILL be over soon-that is the only thing you have right now. I will saying special prayers for you this evening.
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Reading your post almost has me in tears, you are one strong lady and I feel so bad for you and Kyle. He must be a toughy for sure . I can't blame him for fighting death. I would and will do the same when it's time for me to be summoned. I have you both in my prayers .
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Dear Tamara,
I do know wht you are going through. My 47 year old brother hung on as well, fully sedated for the last few weeks of his life. He did not want to leave us. We waited for his last breath as well, it was agonizing. Sometimes I could not sit in his hospice room, holding his hand and hoping for a miracle. Then night before he died, I and my whole family were in his room, somehow we all just gathered at once, it was almost like he mentally summoned us. We were standing by his bed in a semi circle, then all of sudden he was trying to open his eyes, up until that moment he just laid there. Each one of us went up to him to say goodnight and he tried desparately to open his eyes and try to say something. The next morning he passed away. He knew when the time was here and so will your husband. He will know when it is time to give up and rest. My heart goes out to you and your family.
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!
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