| | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Went to get results and I'm we're at @ the lowest point ever. There is 50% uptake in his bones. Jim pushed her extremely hard to get her to tell him how long...6 months if we do nothing; 8 months maybe if he takes another round of kickass chemo. I haven't told his family - I've just cried all day; was supposed to go to work, but came home and went to bed...only got up to talk to y'all. I've just had my teeth and gut kicked in and am expected to go to work and just keep pushing forward. I don't have it in me anymore; want to curl up and die right along with him. What do you do - more chemo and affect the quality of life that we have now??? At lease he gets up and we go on weekends....or just try this other poison and watch him slowly deteriorate....I of course can't make the decision...he has to. He is the one that is trying to pull me along and looking to me to be upbeat and saying come on - we will do this. His 50th bday is on 8/24/10 and he won't do anything until after the party. Do you really think I feel like partying? I feel like it's a dress rehearsal for a funeral that I don't want to attend. Of course I can't tell him that.....
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im so sorry to read your post. You both must be devastated. Being a caregiver is such a difficult job. Always trying to put on the brave face and say positive things must be very hard on you. Some caregivers also see a therapist and take anxiety meds. It must be even harder to carry on like everything is ok while working. Please remember we are here to lean on.
ChristineSCC 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  | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Paula-I'm so very sorry. Try to not think of this as a dress rehearsal for a funeral. Make the best memories you can right now. Neil was pretty upbeat also even when he finally realized the treatments were never going to help. We spent alot of time with his parents and siblings and that was the best thing we could have done. I know how hard it is to put on a brave face but you MUST. There will be plenty of time for tears in the future, unfortunately. You know I come from a place of experience on this subject.
Jim sounds very much like Neil. He was the one who wanted to continue with treatment even after we really knew they were not helping. He only stopped when he couldn't take it physically anymore. Jim will know. I wished Neil had stopped sooner to actually improve the time he had left but like you said-it's his decision.
Take time for yourself. I know this is easier said than done but your stress level is so high right now and you have to remain strong. There is time left to enjoy your husband's company and you want to stay healthy to deal with all this. Please feel free to pm or call me ANYTIME. Stay strong-your husband needs you right now more than ever.
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: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Oh Paula,
I am so sorry.....I don't know what to say. Just wanted you to know that I'm thinking of you and Jim. This news just sucks. We're always here for you.
Love,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Paula:
Just wanted to let you know another Forum member is thinking of you and praying that somehow you two can have some peace. Decisions about continuing treatments must be so hard to make -I don't know what I'd do if I were in Jim's position and yours. Maybe some other Forum member can give you their experiences, but you both do have my prayers.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | I'm so sorry. I don't really have any "pearls of wisdom" but just wanted to let you know that my prayers are with you both. Make memories and leave nothing unsaid. Try to take care of yourself.
Last edited by slim; 07-27-2010 09:50 AM.
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | So sorry to read your post. I will also be keeping you and your husband in my prayers. Please try to make the best of the time you have together. Take care.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Dearest Paula, I too join with the others to express my sorrow for Jim's results. When you say you want to die along with him, I so understand. My precious Dad suffered for months. We all sat around, helpless. If anything it was a wonderful family bonding time. We gave up everything & were together constantly. Embrace each day of life, soak it up & treasure every moment together.
The love never ends.
Last edited by Dianne MH; 07-27-2010 05:42 PM.
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Paula, this is heartbreaking news. I'm so, so sorry. I hope you have lots of love
and support from your family and friends to help you and Jim get through this hardest of times.
Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Paula,
I'm at a loss for words. I am so very sorry. Being your friend, I feel as though I share a part of your heart ache and wish I could fix it for both of you. I am here, call or write anytime.
Love and many prayers...
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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