#11236 07-10-2007 07:19 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) |  "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Hi Liz,
So sorry about the news. I have been away, then doing my own 'might be last lunch with siblings ' thing on Monday, before starting 'second round' tomorrow and Thursday.
I'm sure your actions helped give Rob the space he needed to reflect and to give him an opportunity to demonstrate his love for you. It DOES 'MATTER A DAMN' because that reassurance will hopefully help you over the next few weeks.
I'm thinking of you both and am so glad they've got the pain sorted out.
You know where I am, let us know how things progress,
love Brenda x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#11237 07-10-2007 10:44 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | OP "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | rob woke up in excrutiating pain today and nothing we did helped.I called the nurses and they called the doctor and he sat and held my hand and said he had had enough and he didnt think he would make it to yorkshire.
i told him it it was ok to let go if that is what he wants.He has sorted out his affairs and said his goodbyes and i told him not to worry about me,and now he is resting in the local hospice.The tumour is attacking the jawbone and the trigeminal nerve.the doctor spent along time with rob today asking how he felt and what he wanted and asked if he felt anxious or scared to which he answered no just tired and angry.
They have upped his fentanyl to 150mcg,put him on 75mg tryptilline and morphine and diclofenac and steroids.They say he is allowed two beers a day and there is a garden where he can have a cigarette if he wants.his room is very private and comfortable and he seems settled.when i left this evening he was sitting in the sunshine in the garden with a beer in his hand,looking very serene.
I dont know if we have much time left ,they say he may get home again,but then again he might not,his sister flies in tonight and his brother tomorrow,the last two pieces of his lifes jigsaw.
Pray hard for my love that he ends his life the way he chooses,pain fre and at peace
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#11238 07-10-2007 11:10 AM | Joined: Oct 2006 Posts: 160 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2006 Posts: 160 | Liz, My prayers are with you and Rob at this time. I pray that the Lord wraps his arms around him and comforts him and eases his pain as he goes through this. Your description of him sitting in the garden with the beer made me smile, and hopeful that he is at peace. My prayers are with you also, that you will have the strength to get through all of this. Take care. Linda
Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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#11239 07-10-2007 12:36 PM | Joined: Jan 2007 Posts: 21 Member | | Member
Joined: Jan 2007 Posts: 21 | Liz,
My prayers are with you and Rob during this difficult time. I will pray for peace and no pain for Your Love. I pray for strength and peace for you too.
Love,
Amy C.
amy cole, caregiver to husband, stage IV BOT, dx 10/06, 2 cyles induction chemo (cisplatin, taxotere, 5FU), 33 IMRT with weekly Erbitux, completed 3/07.
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#11240 07-10-2007 02:23 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2006 Posts: 378 | Liz, you are doing the right thing in telling him it's okay to let go. You're giving him the peace of mind that he doesn't need to worry about you, and that whatever it is, you are there for each other in the end. They can continue to up the meds if he needs it but sitting in the garden with the beer and the sunshine works too.
My thoughts are with you both...and this completely sucks.
Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#11241 07-10-2007 04:29 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Liz,
Just know that I hold you and Rob both in my heart and I hope he finds peace and comfort as do you .
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#11242 07-10-2007 06:46 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Liz,
I personally know people that have had 500 mcg of Fentanyl (5 - 100 mcg patches) and even 300 isn't uncommon so if his pain isn't a "3" or below, demand that they increase his dosage. They can also give Methadone for breakthrough pain which is very effective.
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)
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#11243 07-11-2007 01:59 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Dear Liz,
I hope that his passing is comfortable for Rob and all of you. God Bless.
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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#11244 07-11-2007 02:01 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | OP "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Thanks gary they have mentioned methodone as an option already,but when i went to see him this morning he was good.He likes the place, is comfortable and content.They have even mentioned getting him home for a while next week the large dose of amitryptilline he is on seems to have helped any anxiety he was feeling.The biggest problem is the hole in his face,which is creating a foul smell and discomfort in the wound but otherwise it is a nice place to visit.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#11245 07-11-2007 07:36 AM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Liz,
Rob sounds much more at peace, I am planning a visit to our local hospice shortly (just to 'see' at this point)but have been so pleased when nurses said everything is done for pain-relief and maximum comfort. I've also spoken to the husband of a lady who went home for quite a while after she'd been 'stabilised' and made more comfortable there--so whatever, and wherever, you should both be as well looked after as is possible at this awful time.
Thoughts and prayers remain with you, you're a lovely and strong woman Liz and will be a great source of support for Rob and his family---and we're all here for you
Brenda x
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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