| | 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 | Communication is something that only seems to come back after the tx is long behind them i am afraid.I dont mean the speaking,i mean letting us know how they really feel,and if your man wasn't the best at showing his emotions he will probably not start now.The silences can be deafening and at times are only broken by frustration and anger.Its a guessing game wendy butfortunately for you there are men on theses boards who will be more than happy to tell you how they felt post diagnosis and during tx,something hopefully we will never really know.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Wendy,
Welcome to OCF, as you proabably already know, this is an awesome site!! Steve is lucky to have you. The road will not be easy but we are here for you every step of the way. There are so many wonderful people who are full of knowledge. Please keep us posted.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well stated sue. I understand your hubbys very well. Why complain when it does no good except cause someone else misery.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | EzJim, I think you have him down to a T. I asked him tonight if he was scared to which he shook his head NO. I asked if he was feeling down to which he shook his head NO. I asked if he has just accepted this to which he shook his head YES. Sometimes I wish he would get angry, just to see some reaction but I suppose acceptance is really the best. Although I suspect he doesn't open up to me so as not to cause me more pain. He spoke to me today, only a few words. It was the best sound I'd heard in a long time. Made me realise how much I've missed his voice.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Oct 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 49 | Wendy,
When my hubby was diagnosed, he had advanced SCC tonsils, and mets to neck-- very, very extensive.The CAT scan was unbelievable! They gave him a 50% chance of survival. Post rads and chemo, he had neck dissection to remove the rest of the cancer +++all the nodes. Head of h&n surgery did the procedure: he gave him an 85% chance at that point! Things changed radically at that point and the hope index went through MY roof. He was always positive through the whole thing, knowing that a positive attitude is sooo important. We never "talked" about any of this until post tx. He said he was scared; it was so unbelievable since it all happened so fast.
Just be there, do what you have got to do to help him (whatever he needs), and keep smiling. I never let him hear me talk to anyone about all this. I would email friends and family and talk on the phone outside. I pushed him to get nutrition in his PEG tube and encouraged him to swallow (ever so gently) because I was told to by the Team of Dr.'s.(the throat forgets how to do this if they don't keep it up.) I encouraged him to do his jaw stretching exercises.
We met this man at his last appt. who had very similar condiditon as your man. He was two years past tx. Had his jaw replaced and teeth removed and false teeth and part of his tongue removed, too. He looked and sounded WONDERFUL!!! And he was...he said that it all gets better with time. Time is the key. Hang in there and in no time, it will be time to heal.
I am here if you ever need help...we all are.
Love to you......
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Wendy, I have him to a T because I was the same way LOL and still am. Gotta worry about aneurysm repair and this is way behind that. LOL But I won't say a word about either but will post.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Donna,
50% is actually not a bad starting point - mine was 26%. The RO said she could give me an 80-85% chance of 5 year survival and I made it to 6+ so take the best numbers and toss the lower ones!
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)
| | | | | Joined: Jul 2009 Posts: 16 Member | | Member
Joined: Jul 2009 Posts: 16 | Wendy,
My heart goes out to you. I had the roughest time when my husband went thru rad/chemo as I hadn't found these boards yet and only had friends and family to talk to but no-one really with experience...my recommendation is to do everthing you need to keep him on track...be as calm as you can and strong as you can throughout...you will be the rock that he can and will rely on. Our common sense will guide us to help get thru this the best we can...in baby steps and repetitively.
I would track EVERYTHING going in and out of his body and pester him relentlessly to the best my sanity would allow...kindof feeling like every single day was monumental in his getting thru this!
Prayers are with you!
Jeani, caregiver to husband Art, 61 Dx left BOT SCC 9/08 peg 12/29/08 35x rad and 3x Cisplatin ended 2/22/09 Left RND 7/6/09 took everything and 4 of 30 nodes involved
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 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: 8 | Hi Wendy, welcome to OCF. You will find lots of support here. Its a long road and its not easy but it is able to be overcome. Having all your teeth removed can be a huge adjustment. Ive had mine out for 4 months and still avoid looking in the mirror. Eating is something you somehow adapt to without teeth. Glad to see a peg is going to be used. A port is also very handy to have. Make sure you take a few minutes everyday just for you, the caregiver. Best of luck with all the upcoming treatments.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I don't want to hijack this thread from Wendy, but, Christine...you should be happy to look in the mirror!! I am one of the lucky ones and I got to meet you. You are a beautiful and strong woman. You should look in the mirror and sing "I am woman, hear me roar"!!!
xoxoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | |
| Forums23 Topics18,306 Posts197,298 Members13,504 | | Most Online7,516
Mar 21st, 2026 | | |
|
