| | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Gretchen, how wonderful it is that he has a guardian angel like you along. A lot of the ROs will let you know "it's going to be a rough road" without adding a lot of detail and I think that's OK on the front end as the patients do react differently to the tx but side effects are pretty darn common to most. There shouldn't however be any feelings of "flying by the seat of the pants" or an office that is unorganized. He should have a regular appointment ( maybe they're trying to get that squared away ) and the full attention of his RO whenever he needs him. Don't either of you hesitate to speak up! There's no question you can ask that folks can't answer here. Best of luck to him and you.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | "flying by the seat of one's pant"
Sorry this is a very very very stupid question, what does this mean (half French and a bit bad with expressions)? Martin can't explain it he's not sure.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | 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 | It originated in early aviation when planes had few navigation instruments so the pilot had to fly by instincts or "by the seat of his pants".
Today it means doing something without planning it out or deciding what to do as you go along without any help.
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 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Martin rmembered!
make it up as you go along!
It sometimes felt like our consultants did that, but i think is that everyone reacts so differently to treatment, pain relief and everything surrounding SCC that they have to adapt to every patient. Obviously not the TX but the side care. it does get very frustrating as it seems that you cannot get any straight answers, but you will also learn to train the doctors to answer the questions straight. You can get loads of ideas for questions here, i know I do.
I have my list prepared for tomorrow's follow up and i will not let them fob me off and ignore me like they do martin when he goes alone. Don't let the consultant fob you off with jargon.
Anyway, i got 99.9% of my answers here.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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