#50853 08-17-2004 04:14 AM | Joined: Apr 2004 Posts: 32 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 32 | Hello all,
It so good to be able to read and hear how people are going. Things have been so busy, I haven't even had time to check in here...John finished radiation about 6 weeks ago and has had the trach out for 3 weeks and hopefully will be able to get the G-Tube out soon. I feel like I should be thrilled, jumping for joy, etc...etc...But mostly, I feel exhausted. John is really amazing he is working almost full time and sleeping when he gets home, our 3 1/2 year old is really coping well (Last evening she said, "I think this cheese is soft enough for you to eat...what to try some Daddy?"...We both thought we would cry...she's a real doll!!!) My work has been so supportive even though I've been really, really slow at getting anything accomplished...So really everything is going well, but I feel exhausted...I already did the Paxil thing...so I don't feel depressed really...just, well, exhausted...and I have the easy job..poor John is doing rehab, working to swallow, managing all the spasms...and I'm the one who wants a vacation...can someone please talk some sense into me... :-)....
Thanks and lots of love,
Sara
Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
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#50854 08-17-2004 04:39 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Mar 2003 Posts: 251 | Sara,
I don't think you need any "sense talked into you." You have every right to feel like you need a vacation after what you have been through. Hope you are at least getting some "mini vacations" - moments to take time out for yourself. I know that I felt exhausted from helping my husband through treatment, and I didn't have a 3 1/2 year od to think about, as well. Though I suspect that little girl also gives you and your husband the spark to keep going.
It is great that John is back to work so soon. Good for him. My husband was still sleeping most of the day away at 6 weeks post treatment.
Best wishes to you...things will get better and better.
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#50855 08-17-2004 05:44 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Sara-
My husband (of two months!) dangled a Hawaiian vacation in front of me as an added incentive to make it through chemo! I couldn't see myself there until I got rid of the PEG tube though. So we put if off until our first anniversary. Any vacation time you can arrange just to get away from it for a while??? The treatments and the stress of the diagnosis is very draining for the whole family. Celebrate surviving treatment and head out of town for a long weekend! Those little ones can sure bring a smile to your face! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#50856 08-17-2004 06:00 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Sara,
I think it's just as diffucult being the caregiver as the cancer victim. There is a special place in heaven for caregivers. It's normal to feel overwhelmed at times. Please take some time for yourself. You certainley earned it Sara! This is quite a rollarcoaster ride on your emotions though.
Hoping you feel better soon,
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#50857 08-17-2004 07:20 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Sara,
I sure know the feeling as a caregiver. It's just an exhausting...wish I could do more to help my husband feeling. I had to use Xanax and Ambien and some Lexapro to make it thru. You guys are doing great. My Dan is just back to work 5 months post treatment. I got layed off three weeks into Dan's treatment which turned out to be quite a blessing. I couldn't have worked full time during all the treatment days. And Dan wasn't sleeping much at nite and many nites I didn't sleep at all...too much to think about. Anyway, I sure know where you are coming from. As he feels better, so will you, or at least that is how it has been with me.
Take care and God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#50858 08-17-2004 02:11 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Sara, I've been on both sides of the fence now, both as cancer patient and caregiver to someone with cancer, and it ain't no picnic no matter what side of the fence you're on. Garegiver's just as hard as patient, if not almost more so.
Don't feel guilty, and remember to schedule some "me" time. You would be surprised how one night a week out with the girls, one afternoon a week just doing what you want to do can recharge the batteries.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#50859 08-17-2004 06:03 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Sara, It is not just OK for you to have time away, I believe it is mandatory!
Get with some friends and have a weekend (or longer) at least 100 miles away. If your husband can't take care of the little one yet find a good place for her to stay seperately (grandma etc.)
Don't call in and don't worry. You need this and your family will benefit from the "new you" when you return.
This ordeal IS really hard on caregivers and loved ones alike. It is really important for you to get a real break from it.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#50860 08-17-2004 06:04 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | computer glitch! Suddenly there were three posts of the same thing. 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#50861 08-17-2004 07:02 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Mark, an old time poster like you knows that the last little icon next to your name with the paper and pencil allows you to edit or delete your own posts. I have done this for you. Only the poster can edit or delete a post of their own, unless you are the webmaster or the forum moderator, i.e....... me.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#50862 08-18-2004 04:14 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Indeed! Today was post number 600, and I am old enough to claim senility with regard to DELETE (I always knew about the edit) 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#50863 08-20-2004 05:23 AM | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | Sara,
Great job. I was 41 when I was diagnosed. My wife was pregnant and we have 4 other little monsters under the age of 10 running around. She still had the time to take care of me all the way through. I dont know if I would have made it without her totally unselfish love and support.
My wife Christine and I want to offer any support that we can give along with our prayers and thoughts.
Please feel free to contact me/us anytime.
Thanks,
-rh
P.S. How many people out here are under 50 anyway? Anybody know?
SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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#50864 08-20-2004 08:20 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Rob I am not sure about the guys, but I believe ALL the women are way under 50!  :p
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#50865 08-20-2004 10:39 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | I WAS way under 50 when I was diagnosed (age 39), but now I'm 54. Time marches on! :p
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#50866 08-20-2004 01:36 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I just hit 43 this month and was 41 at my diagnosis. I am thrilled to be 43 and look forward to 50 in a way I never felt before.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#50867 08-21-2004 02:52 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | I was 44 when diagnosed, turned 47 in June....I am with Minnie, looking forward to 50!!!!!!!!!!Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#50868 08-21-2004 02:26 PM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 106 | I was 49 when diagnosed, turned 50 in July, and still waiting for my big party (postponed 'til I can taste the food). I had never felt 50 would be old, but now, against my better knowlegde, I sometimes wonder if i am feeling this tired because of my age.
OK, I know it's the radiation, and will get better, but I do get depressed. Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04.
Also had renal cell carcinoma, left kidney removed 11/04
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#50869 08-22-2004 04:24 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Leena,
I would be worried if you weren't depressed. There's so many quality of life issues to deal with. So many decisions to make, So many different kinds of treatments. A hell of a lot to worry about. Are you taking any anti-depressants? If not ask your doctor for something to help you with the depression.
I was 53 when dx and will turn 55 in November.
Best Wishes, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#50870 08-26-2004 02:14 PM | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | Sara,
I'm with Rob. I don't know how the caregivers cope with this. I didn't think it possible to love my wife of 34 years any more than I did, but after the incredible things she has been through in the last year.. well I don't have to tell you.
Make sure to take sometime for you. God knows you deserve it
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
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