#34815 07-10-2007 12:15 PM | Joined: Jan 2007 Posts: 21 Member |  Member
Joined: Jan 2007 Posts: 21 | Paul,
You and your mother are in our prayers.
Amy C. and Garron
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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#34816 07-10-2007 04:09 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Paul ,
Please let Kathleen know that you are all in my prayers and I admire her courage and strength through all of this..May she find peace and comfort . My heart goes out to you all!
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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#34817 07-10-2007 05:43 PM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | What a very long time i seem to have been reading you posts Paul.Yesterday Robin said more than once,if he had known the outcome of his diagnosis he would never have agreed to all the treatment.Having stood by his side and watched his progress,i cant say i blame him.He hasnt eaten a meal since february,but rarely lost the desire to sink his teeth into a juicy steak.He has had no quality of life for months and now this cavernous fistula is the last straw.I applaud your Mothers decision to do this her way and yours for walking by her side.
Good Bless you both.
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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#34818 07-11-2007 01:45 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Paul - My heart goes out to you and your mother in this ever so difficult journey. The closeness and love between the two of you really touches me. (My son's name is Paul, too, and your Mom and I are the same age) I pray that in the days ahead, there will be peaceful and treasured moments for both of you.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#34819 07-23-2007 12:19 PM | Joined: Dec 2006 Posts: 36 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2006 Posts: 36 | Well... 15 months after diagnosis, mom has finally given in and has agreed to have 24X7 care. She is still staying in the apartment but will have a home care live-in worker there from 9 am Monday through 9 am Saturday. The family will cover the rest of the time.
I am heading down there tonight to stay over and be there when the live-in worker arrives.
Mom's left leg (calf down to the foot) is now causing her pain when she walks. Two toes on this foot spasm 6 to 7 hours into her sleep. This wakes her up and she only gets relief when she gets out of bed (hence the major need for coverage).
The significant difficulty to walk (just in the mornings a few months back) is now with her all day. The nurse was there today and has coached her in turning up the meds for relief. Mom is fighting this option. But, I think she will agree since her last bit of independence is over. No more living on her own... Cat gone... Car sitting there never to be driven by her again...
Having someone there with her all day is such a relief. I am glad she has agreed to this decision. | | |
#34820 07-23-2007 01:55 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Paul
I Am glad you find comfort in this and I am sorry mom is hurting so much still. I have thought of you and Mom often ...and pray for you both as well ..please know I hold you in my heart and thoughts.
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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#34821 07-24-2007 02:37 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | May God be with you at your time of need. Bless you and your family. You are a good man Paul.
Petey
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#34822 07-24-2007 03:55 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Dear Paul, something I did for John,during his last weeks, was gentle foot,ankle and leg massages with a very good skin lotion several times a day - it might help with the spasms and the human contact is always comforting. Amy in the Ozarks
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
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#34823 07-27-2007 01:13 PM | Joined: Jun 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2007 Posts: 42 | you know i read alot on here and this one is really making me more sure that the best thing to do is go for comfort care and be one body not a cut up mess thats sick to the end..im sure in some cases surgery and treatment may work but there are others that i think may be to far out of hand and the best would be the comfort care... we are going to ohio state on monday to see what the dr has to say on this 2nd opinion.. the dr in morgantown really wanted to do some extensive things and EzJim thought it be best and go for a 2nd opinion.. and i agree..im almost certain hes gonna say he doesnt want anything done and just be the way he is.. but i guess we will wait and see..what ever it is he decides then that what i will go with..
Barb
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#34824 07-28-2007 02:04 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2006 Posts: 378 | Hi Paul, I have to agree with Amy that we can't underestimate the power of contact. A lot of our patients find it comforting to have someone holding their hand, or the light massage with lotion that Amy is describing. My thoughts are with you and your Mom. I'm glad to hear that she has accepted the live in help. I hope that her passing in an easy one. 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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