#89765 02-09-2009 01:21 PM | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | OP  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | They hae been in my prayers. We are currently away on a bit of a vacation and each church we stop to see, I light a candle for Neil. Praying for their strength at such a difficult time.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | We are hanging in there, thanks for the prayers. It is getting harder for Neil to breathe as he has a tumor on the left side now also. His lungs are clear but he has alot of pressure on his esophogus from the neck tumors and the large ulceration on the right side is getting deeper. I am trying to have his Dilaudid decreased since it is causing so much agitation and confusion. He sleeps most of the time but when he's awake he tries to escape from the bed but cannot stand up on his own. I'm so afraid i will turn my back and he will get out of bed only to fall and get hurt. The constant worry is exhausting and he is increasingly mad at me. I just really wish the last days we have weren't filled with so much pain and worry. I would love to have one more coherent conversation with him-it's hard to remember being able to talk to him and have him understand me. I hate this disease.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Sue,
Every time I read your words, my heart breaks more for you, for Neil and for your family. I am also reminded of how lucky I am to be beating this thing and humbled by it.
My thoughts and my prayers are with you.
- Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Sue- I pray that Neil will have some lucid moments here and there without distress. The long term effects of the meds must be kicking in. I'm so sorry that you always feel on watch. very very exhausting. Hang in there. We are all here for you as you tredge through all of this. We all admire your dedication and toughness Sue! LOVE Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Sue
It's not fair. It's not right. Why Neil? Why now? Why didn't the damn treatment work? How can such suffering and pain be considered part of the palliative approach in the 21st Century?
There are no answers, just more questions.
Your description of what Neil is undergoing matches the dire dirge the ENT surgeon spelled out as the standard way this ends when it ends so badly. My hope is that Neil has a few lucid moments to share with you. My heart breaks when I think of how you feel. In my mind, each breath Neil takes now, each pain filled moment is a testament to how much he still loves you and wants to be with you - the anger is not at you - it's at himself. Nothing any of us can say will make it better, but I join you in cursing this disease.
Last edited by Charm2017; 02-10-2009 11:56 AM. Reason: typos
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | I too curse this disease,but i thank heaven every day for the english hospice care system,and the fact that the last three weeks of robins life were the happiest we had known for a very long time.I am so sorry that you aren't having the same experience sue.Out of 21 days in the hospice,i only had 1 day where i experienced what you have to face every day.It is a cruel and unfitting end for a couple who have fought together so valiently.
my thoughts are with you every moment of the day
love liz
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.
| | | | | 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 | Sue, thanks for posting. I know its difficult what you are going thru to take the time to write. Just remember how much Neil loves you and your children, its not him being mean. This is beyond him, its confusion coming out as anger. Neil is very strong and resilient, he isnt mad at you, its the situation he is upset with. I think about you both daily and say lots of prayers.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | He has an emotional problem with a intangible enemy, so in his drugged stage he has chosen you as something tangible to focus his anger on -- He wouldn't do it if he actually knew what he was doing at this point, but you have to remember that it just isn't personal.
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.
| | | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Feb 2008 Posts: 341 | Oh Sue - my heart just breaks to think of this. We are always praying for you guys and we are now specifically praying for some lucidity here at the end. Strength and hugs to you!
Michelle
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Sue,
Just to let you know that prayers are being sent for you, Neil and the boys as you continue this journey. May you be comforted by knowing that so many of us are with you.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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