#89504 02-04-2009 09:48 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 | Wondering how you and your family are doing today. Know you are in my thoughts and prayers daily.
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 trying to hang in there. Neil is pretty confused most of the time but is not in pain. I am struggling with making sense of this needless suffering. I'm also trying to hold on to my faith in God-I feel it waivering right now and I don't want to go down that road. It's so hard to see someone who had struggled so hard and fought so long spending the rest of his days in a bed not knowing what's going on around him. So many wonderful members of Neil's local union have come by to say that they owe their jobs/ways of life to him and I hope he realizes this on some level. It's just so unfair that someone who has given so much should have to die like this. I do, however, get strength from coming to this site and reading everyone's posts. It helps to know that people i haven't even met face to face are so caring and compassionate.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Sue,
We are with you. I have been checking several times a day and praying for you. Your feelings are normal. May your faith in G-d stay strong and continue to sustain you at this time.
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.
Support OCF
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Sue,
Neil's reward for a life well lived is soon to be. I think that is where you have to go while getting thru the next days. I love the hymn, "Great is Thy Faithfulness." I sang it to myself many times during and after my father's death.
Wishing you strength,
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Sue
Please don't let this terrible DEMON of a disease win by not only taking Neil but stealing your Faith. None of us knows why bad things happen to good people, but they do. Lord knows, if anyone deserves to feel down, you do. I'm fixated on cancer song lyrics today so here's one for you when you feel like it's all too much with too many balls to juggle.
[quote]
Well hey, even the greatest juggler drops a ball or two
The question still remains what then does one do?
This ball got too heavy and I dropped it for a sec
Good a time as any to do a little check
God knows I ain't superman - Never claimed to be
I must confess this was a test I thought was behind me.
Now, dragons have a way of creeping up on you
Giving you some time to figure out what you will do.
But demons are a different beast and catch you unawares
They sting the soul and make fear become your only care
DAMN those demons and the speed at which they fly
You think they're gone but then they're back to spit into your eye.
[/quote]
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Sue, Stay strong and don't let this make you loose faith in God. I don't know why...But, I have also been listening to songs that mean a lot to me and have been really really taking them to heart more so then ever. The one song that has hit me a little hard but in a very good way is "Lean on Me" by Bill Withers. Stay strong http://www.youtube.com/watch?v=2Wpof8s5ZTg
Last edited by Ray1971; 02-05-2009 09:54 AM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | Sue. Thank you for taking the time to post. We are all concerned and it was good to hear from you and giving us an update on Neil as well as yourself. Everyday, all day, you all are in my thoughts. I can't seem to muster out the appropriate words to say to you. We all love you and care about you. Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sue,
I think of you and Neil daily and your thread is the first I check when I log on. At this point I just hope the end is soon for the both of you and your kids. I have no magic words to make this better, but just know that you and Neil are in my thoughts daily. Take care of yourself.
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | The experience that Sue is going through pushes your faith in everything to its absolute limits.The only thing you know you can trust is yourself,and the knowledge that it will inevitably end.I think in some ways it takes you to a point that when that end comes,you are actually relieved its over,but the anger at the unfairness of the nature of that end takes much longer to leave.
It is the experience Sue is going through and the one i went through,that highlights the reason why just about every one on theses boards who has a partner,uses the phrase "we" when talking about treatment.It truly is a disease whose effects torture the mind of the sufferer and the carer equally in different ways.
Sue you have been noble and courageous throughout and no one could argue with how you feel right now.
take care
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: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Sue, You and Neil are in my thoughts and prayers! Neil is lucky to have you as acare giver and partner thru life!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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