| 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 | As the Holiday (or Holy Days) approach, it can be hard on us. The emphasis on food and parties can be depressing for those of us who can't eat or have swallowing difficulties. The weariness of radiation that lingers on after the treatments are done doesn't help either. I was struck by this headline on an article in my local Catholic newspaper. While I object to the tyranny of positive thinking, the author's little story made its point to me [quote]In 1953, I was in the US Army, a military police officer walking guard duty at midnight on Christmas Eve. There I was, a lonely draftee serving at Fort Sam Houston in San Antonio. My civilian life seemed a million miles away, I could actually hear the choir singing Christmas carols at the post chapel where midnight Mass was being held. I felt terribly alone. It never dawned on me that night that I was giving in to self pity. Indulging my negative feelings kept me from realizing the wonderful opportunity I was given. It would have been so much better had I sung along with the choir.... the gift of joy never descends on those who think they are a poor helpless creature.[/quote] Just a reminder that we can cope with the Holiday spirit even when our spirits are low. 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: Nov 2009 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 92 | Charm,
Thanks for that story - I needed it. Thanksgiving hit during my "rough patch" of round 1 induction chemo. I realized IC is nothing compared to chemo-rads, but still felt sorry for myself for feeling sick, and feeling the need to act like I felt better than I did. Truth is, I was with people I love, and was able to eat a few things (hooray, overcooked veggies and gravy) and the pain meds that helped me eat only made me tired, didn't knock me out. I had to do an attitude check a couple of times.
Here's to all of us singing along . . .
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | We all have to do an attitide check sometimes....don't we? lol
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Let me make it clear that this post was aimed at myself, and not any poster here on OCF. I would not want to discourage anyone from venting their frustrations, anger and fear. I had to rewrite our family Christmas letter as it just reeked of self pity. I ended up noting the eerily appropriateness of my GPS' "Recalculating' when I deviated from the directions. We are "Recalculating" the course of our lives. It's a different road then we had planned, but it is still an adventure. 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 | well i for one can do without the holiday spirit.All it means to me is a day to day reminder,from first hospital visit on the 8th december through to FNA,biopsy,laser dissection,results,MDT meeting,body scan the most miserable christmas ever hundreds of miles from my family alone while rob was in bed for 3pm unable to eat or drink with the secondary tumour pressing on his windpipe.Holiday spirit? Bah humbug i hate christmas.Self pity?damn right and damn cancer
Last edited by Cookey; 12-07-2009 09:46 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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | You have every right to vent and here is a good place to do it, all we can do is our best and I try to remember that there are many here who have had a more difficult time then I had!!! 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 !!!
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Yes Charm- We understand first hand your pain. You want to eat so badly but you can't- and it just sucks. Everything social revolves around food too. I've been there - not during the holidays - so I can only imagine how much more difficult that must be because the holidays are so food ephasized.... You have my sypathetic ear and empathy for sure 2000%
Wishing you some comfort and joy in some way during this next month.
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: May 2009 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: May 2009 Posts: 35 | This will be my first Christmas after Dx, surgery. As in my signature, I had total glossectomy, with flap permanently anchored to floor of mouth. Even if I have all the will in the world, until I find the right technique, I could not eat/swallow solid food (because I could not control food in my mouth) and therefore have to live on blenderized foods.
So Christmas-wise, that means I have a very limited range of food choices to co-celebrate with family and friends. From where I come from, Christmas season is one of the two most celebrated Holidays (if not the most celebrated Holiday).
I have two choices about my situation: be bitter, or be better. It's my choice how to react and feel during this season: stay at home in a sulk, or celebrate; just like the MP in the quoted story above - indulge in negative feelings or be joyous, too.
I am constantly reminded that "attitude is more important than event". (note: "more important"...so this phrase doesn't belittle the event)
And as I read the actual experiences of posters under various topics of this board, the more I am reminded that I still have a lot to be thankful for.
Diagnosed: 16Feb'09 Pre-op Dx: Tongue SCCA Stage IVB (T4N2cM0) Opn: 2Mar'09. Total glossectomy, Neck dissection (Levels I-V), bilateral; Anterolateral, Thigh flap recon'n; Tracheostomy; PEG Decanullation: 24Mar'09 IMRT x30, concurrent with chemo (cisplatin) x3: May-Jun '09 PEG out: 23Oct'09
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi Everyone,
I just read this entire thread and it is heartbreaking to me how the holiday focus on foods alienates the OC population.
We have been invited to an annual Christmas dinner that in the past was something we looked forward to. As my husband is recovering from jaw surgery, this is too much of a challenge for him at this time. He is still on a liquid supplement and standing around watching others drink spirits and eat passed hor d'oeuvres would be torturous. The graft on his leg alone makes this difficult not to mention the sutures on his face.
We have decided not to go which is fine with me. However, some of the other friends who are going are still sending notes in their Christmas cards really pushing the event. I know they mean well but part of me feels that they think Clark should be better by now and should want to come just to be with friends. What??
My husband does not feel sorry for himself but he also does not want to put himself in the arena of being the odd man out. We know that in time things will improve. So for now we're laying low.
Maybe there can be a different way to celebrate the holidays that can include those whose eating patterns have changed. I am discovering that food, like alcohol, can be overrated. I mean that in the kindest way. Clark really misses the desire for and the taste of certain foods. I am just trying to find a place for him to feel comfortable regarding food issues.
Peace to all!
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 I wish my wife and I were still invited to Christmas parties. Even though I cannot eat or drink, I have attended school reunions and anniversary parties where the food and drink were indeed the center of attention. I just whip out my PEG and use a syringe to put some alcohol down the feeding tube (all my doctors agree as long as I bypass my mouth and throat - no harm) While I can respect and understand your husband's reluctance, it's too bad he doesn't post here so I could tell him directly to reconsider. It can do a world of good to reconnect with friends. Plus it would give you a break from caregiving's focus on cancer. Perhaps you can make an appearance - socialize and then leave early. Everyone would understand. As I started off - our problem is that our so called friends treat us like I am dying and shun us. (I know, they weren't really our friends after all). So maybe share this thread with him: life is too short to pass up an opportunity to celebrate with friends who still miss him and you and are eager to see you. The world is not going to adjust to us, we need to adjust to the world. Just my opinion but then I don't mind watching others eat & drink nor do I mind being a stand out in a crowd. (I wore a 13th century Tang Dynasty Chinese warrior silk recreation of the outfit of the Wind character in Flying Daggers to my very staid agency for my retirement party for a ceremony with our office's top Presidential appointee) 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
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