| | 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 | What does "faking good" translate to in US?
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: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | OP "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Thanks Kathy, well that saves me a trip to the grocery store tonight! Job jar it is...I'm totally blaming you if he complains!
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | My mother is 91 and the rest of the family said, "Oh, don't tell her anything until later." I disagreed. Besides the obvious problem that she is a technophile and reads my public blog, I've found that lack of accurate information tends to make imaginations run wild. So I told her that I will not withhold medical information from her, and I haven't. As soon as I have new information from tests or doctors, I pass it along in a "matter of fact" tone. I don't let her see how worried I am, and I don't tell her all the in-depth details I find through my own research. She appreciates being "the first to know." This seems to work well for us but I realize everyone is different. The others have given you good advice to let them be involved and helpful. Those who care about you need to feel useful instead of powerless. Mom isn't in a position to help me physically but I do let her buy me lunch :-).
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I don't think he'll complain!! Especially being a man. They would rather do physical stuff then have to face emotional stuff. Good luck. Please let us know how THAT goes too!! And you can blame me. I'm not afraid!! ;o)
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | David, I think "faking good" means pretending to be ok with things when she's really not!
Silly guy!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | OP "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Yes, David, "faking good" is exactly how Kathy described - trust the caregiver to know the term, LOL.
I have told them the medical info, although I have not described the surgery, as damn, the thought of the details freaks me out.
I had an "education session" today, which is required here to outline the specifics of the procedure, and all of the tubes, monitors, drains, etc., I will be attached to. My best friend came with me, and she looked like she needed a drink afterward, so I definitely need to figure out how to fill my parents in without causing a panic attack.
I hope everyone elsewhere is provided the same kind of access to this type of service, as it was very helpful, albeit hard to hear, to prepare me. It also gave basic info like parking, and who to call for updates on the surgery so they don't have to be at the hospital for 14 hours. Kudoos to my team at the hospital for being so great.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | Tina,
I was hoping for an education session like yours but did not get it. The more technical details, the better. It's great that you did!
K
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | It is overwhelming to hear it all at first, but once the wheels get rolling it all falls into place and makes more sense as you remember what you were told. Hoping one of you took notes though?
Your parents will freak. That's all there is to it. They will freak and then, hopefully, they will settle in and be ready to battle with you for the month that they are there. Course your dad will be busy fixing things!! ;o)
Good night!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | Tina,
You are getting prepared and we will be with you 24/7 for as long as you want.
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: Oct 2012 Posts: 12 Member | | Member
Joined: Oct 2012 Posts: 12 | Hi Tina,
I just had my surgery done on Sep 14. Removed 3/4 of my tongue and left neck dis. No node were +, but pet show 2 big one.
Any way, my suggestion is eat what you love from now，take vit. C and iron everyday from now, and get you teeth check up ASAP!
Surgery is not scary, and what I found from this forum that Rad, and Chmo is not scary either! Just think +, and all the good thing in your life! Be strong!
We will make it!!!
Michael | | |
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