| Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | JoJo
Your post gives me the opportunity to add another Nietzsche quote to the OCF mix (I have to keep up with Christine & EricS) [quote]�Out of damp and gloomy days, out of solitude, out of loveless words directed at us, conclusions grow up in us like fungus: one morning they are there, we know not how, and they gaze upon us, morose and gray. Woe to the thinker who is not the gardener but only the soil of the plants that grow in him.�[/quote] Sounds like you are a gardener, weeding out the self-pity. Charm 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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Charm,
Your reply is beautiful. I got teary eyed reading it and at the end I laughed out loud. Thanks for your heartfelt words. You gave me a lot to think about.
Much of my husband's reluctance in participating outside of our home right now is based on his lack of energy, level of pain and this persistent infection. He gets so wiped out. Right now he is napping--we were out for about an hour this morning.
You are so right that our connections with friends are so important. We have had a few folks stop by for visits. And we will be celebrating Christmas with family.
As a caregiver, I have to push myself sometimes to get out and away from this stuff even for an hour at a time. And I do feel guilty that I CAN escape from it when he can't. I love him so much and I want to spend as much time as I can with him.
It's all a tricky balance. Did anyone take a picture of you in your Tang Chinese warrior outfit? Thanks so much--you made my day!
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Anita How very nice of you. I must confess that I have worn that outfit not only to my retirement ceremony but also to my 40th High School Reunion - since the invitation said "dressy casual" as well as to the American Society of Mosaic Artist's ball. I was the only gentleman at all of these events with a long flowing silk gown and brocade vest. I do not cut as dashing a figure as the movie star shown here - just scroll down past the disney ad: Tang Dynasty costume but you can get the effect. Charm 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Anita
I forgot to add how much I can relate to how your husband feels. The song by Snow Patrol : Chasing Cars not only has evocative lyrics but an appropriate tone of what this period is like. Every-time it comes on the radio, my caregiver wife and I tear up. It was on during the worse period of TX for me as I lay on the couch seemingly forever [quote]We'll do it all Everything On our own
We don't need Anything Or anyone
If I lay here If I just lay here Would you lie with me and just forget the world?
I don't quite know How to say How I feel[/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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | I love this song but never knew the lyrics. thank you. Charm- I'm so happy that you are still the life of the party
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) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | The news of Stephanie's death puts this thread into perspective. When I was alone at night in the hospital and posting here at OCF after the surgery, she was the first one to answer me. Now she is gone. In looking back at the archives, I see that the second person to answer me on that thread was Patty -( Good 1)who also has left us. That makes two out of the only three people who comforted me that night taken by this disease. There was a little ditty in the paper the other day that went something like this: [quote]Christmas Season draws near, not much reason for cheer, but at least I'm still here[/quote] I need to remember that. Charm 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 | We all need to remember that Charm ,especially those of us consumed with self pity at what our lives have become thanks to Cancer.Stephanie was so young and had so much to look forward to its tragic and unfair and downright SUCKS. On Sunday i went to the hospice Light Up A Life service in memory of loved ones lost and a 16 year old with an amazing voice sang Run by Snow Patrol.The words were haunting
"Run"
I'll sing it one last time for you Then we really have to go You've been the only thing that's right In all I've done
And I can barely look at you But every single time I do I know we'll make it anywhere Away from here
Light up, light up As if you have a choice Even if you cannot hear my voice I'll be right beside you dear
Louder louder And we'll run for our lives I can hardly speak I understand Why you can't raise your voice to say
To think I might not see those eyes Makes it so hard not to cry And as we say our long goodbye I nearly do
Have heart my dear We're bound to be afraid Even if it's just for a few days Making up for all this mess
Last edited by Cookey; 12-16-2009 08:37 AM.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Liz
All too true and well said. Since we are on a Snow Patrol roll, here are the entire lyrics to Chasing Cars for MissKate
[quote] "Chasing Cars"
We'll do it all Everything On our own
We don't need Anything Or anyone
If I lay here If I just lay here Would you lie with me and just forget the world?
I don't quite know How to say How I feel
Those three words Are said too much They're not enough
If I lay here If I just lay here Would you lie with me and just forget the world?
Forget what we're told Before we get too old Show me a garden that's bursting into life
Let's waste time Chasing cars Around our heads
I need your grace To remind me To find my own
If I lay here If I just lay here Would you lie with me and just forget the world?
Forget what we're told Before we get too old Show me a garden that's bursting into life
All that I am All that I ever was Is here in your perfect eyes, they're all I can see
I don't know where Confused about how as well Just know that these things will never change for us at all
If I lay here If I just lay here Would you lie with me and just forget the world?
[/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: Nov 2009 Posts: 493 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 493 | I so much identify with things you all are saying. So much of our social life centers around food. While I am trying to eat more, it takes so long to eat anything! My husband and I went to a party Saturday night, and I was so proud of myself that I ate two meatballs and two pieces of shrimp...then I went home and had my good old Ensure. We are supposed to go to a Christmas party tonight, and I probably won't be able to eat much there, either, but we always have homemade pie, and hopefully someone will have made some cream pies. (Lemon Merangue sounds pretty good.)
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | zengalib,
If you would add a Signature Line we could identify more with your post above. For instance it was a long time post Tx before I a lemon merangue pie would have tasted sweet to me so reading your time line would help me to understand where you are post Tx.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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