| 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 | Yeah Malka, GOOD LUCK and come back cured.
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.
| | | | Joined: Jan 2007 Posts: 346 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2007 Posts: 346 | Some things that will help. I made up cards ahead of time that said "Thank YOU'" "I need a nurse" "I need help going to the restroom" You get the picture. You cannot talk with a trach-so take a notebook you can write in to people. I got tired of writing, so notes came in handy too.. Take care Debbie
Partial mandibulectomy and neck dissection 2/3/07. T2NOMO. Had 14 hour operation which included reconstruction of jaw. Reconstruction failed. Some radiation, no chemo. | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Thank you all for the information and good wishes. You are helping me to feel more confident about this. There is much technical information available from the simplest to the most medicaly descriptive but these forums are wonderful for the practical advice from soldiers who have been in the trenches. This is another "missing Minnie" moment. She was so positive and funny in her posts about the after effects. This reply from her on another thread is one of the factors which helped me decide to go ahead with the free flap reconstruction: My leg issues come from the donor leg being slightly weaker than my other leg. Make sense since they have taken some of it's support bone away. I CAN run if I want to, but would rather not as it puts alot of pressure on that leg. I also find that I can't raise it up as high as the "good" leg if I don't concentrate. I have a new dog and put up some gates to keep her confined to the family room until I have her housebroken. The first time I stepped over the gate I took quite a tumble. I led with my good leg and my donor leg didn't raise up high enough to clear the gate........and over I went. Now I lead with my donor leg and dont have any issues.
Pete - I realized that I will have a cast on my leg for a while and I will not be able to put weight on the leg right away so I won't be able to get in a tub for a bath or shower for a while so it will have to be those awful sponge baths or stink. I an abide those better than I can the waterless shampoo.
Debbie - Thanks for the good idea. You forgot OUCH!! I bougth an erasable board to attach to my clipboard but don't think I will need it if I do as you suggest. Last time I just wrote on index cards and a tablet but I like your idea of having ready mades and then I could use the index cards or note paper if needed for other communication. (My clipboard is the kind that opens up to hold stuff.) I did very well with the trach and was speaking much sooner and clearer than expected. My d-i-l said that the nurses were amazed at how quickly I was able to get rid of that thing. One issue I haven't noticed on the boards is the importance of respiratory therapy. I remember now that I was under an oxygen tank, had respiratory therapy throughout my hospitalization and was given a breathing exerciser to use for awhile at home. (I have no recollection of the time frame of any of this). 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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Malka- my husband only had a soft removable cast on his leg while in the hospital. It came off before he left and he really had no restrictions on bathing except for weakness in the beginning. He has no issues with his donor leg at all now. Just a small scar to even indicate he had surgery on it. He was not given respiratory therapy at all and the trach site healed quickly once it was removed. Good luck, you'll come through with flying colors.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | From my experience to have the cards may be the best suggestion the white board and note pad were good but I seemed to be so out of it I thought I was writinging clearly but is was just scribble or it started out fine and by the end of the word or note was illegible...everyone just laughed and blamed it on my uncoordination...which was true but I think it was mainly to do with the drugs...so the cards are a great idea. Man I was really out of it for at least a week so much I don't remember...this was a good thing...The best gift in the world not to remember
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Update - The surgery has been rescheduled for January 5. It was supposed to be Dec.11 but the OR the doctors wanted wasn't available for the length of time needed. I got a call Fri. that it would be moved to Fri, Dec.12. I told the nurse that would not be good because it was too hard on the family. Sabbath starts at 4:44 and with the surgery starting at 7:30 AM and lasting at least 7 hours, my husband would have to sleep over in the hospital. There are several options of places for family to stay but he could not use elevators on the Sabbath and would have to go up and down stairs. Maybe I will use the extra time finding a way to go up and down the stairs at home without putting weight on my leg.
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: Mar 2005 Posts: 58 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2005 Posts: 58 | Malka, I had the very surgery you are going to have. Be sure you take a notepad and pen with you. You will have numerous drainage tubes at first and writing is the most effective way of communication for the first few days. The leg where they remove a part of the bone was not a major problem. They have you up and walking the next day, with a physical theripist at your side. The more walking you can do the better off you are. Even if you just walk around the hall of your room will help you gain your strength. Two weeks hospital stay is the average hospital stay. Staying positive is VERY Important. Each day tell yourself how good you are doing, one day at a time. Bless the little thing you were able to do today that you couldn't do yesterday.
I wish you the best of luck. Time passes quickly and you will be out of the hospital and on your way to recovery. Don't hesitate to ask any question that comes to mind.
Hacklene
Hacklene
| | | | 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 | Malka,
Hang in there and Martha sends her regards. She wants to tell you how much she appreciates what you did for her and she is almost finished her chemo but I can't get her to sit down and use my computer. She thinks she's going to blow it up or something. I'm still trying though. You know me I don't give up.
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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