| | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) |  "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Good Lord...I still take coat, shoes, sweater and even my glasses OFF when I get weighed! I was "big boned" before cancer - and remain so today! I must say I love the people at CancerCare Manitoba. When I get on the scale there - they are so happy that I have maintained my weight and they give me a high 5! WHERE WERE THESE PEOPLE ALL MY LIFE???
Hugs
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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 | hi Teresa,
The weights are a man thing. Martin used to wear several heavy jumpers for his weighings. He lost 2 stones and weighed the same as me before he was convinced he needed a feeding tube.
As for Christmas, the fact you are together is what's inportant. martin managed to get a few things last year, and i got him some little things to open and something for his daughter. He didn't want christmas at all, but on Christmas eve, I couldn't do it, I took out the Christmas tree and decorated it. And found a spot in our then building site lounge. Martin liked it and perked up for the day. This was last year and he is now looking forward to Christmas once again. Hang on in there. You are together.
Cecilia
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 | I didn't use any weights, I was too weak to try and transport them!!
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | well with the "weights" off, andy was down 9 lbs in a week. the RO freaked out on him and told him to use his PEG (something he was avoiding) or she would put him in the hospital.
i was still working and getting him to all his treatments but decided to take a leave so i can take care of him full time. i would make him big pots of soft food (spaghetti, chicken n dumplins, etc) and ask him if he was eating, he told me yes but admitted he was too weak to get it or his throat was too sore to eat.
i am mad at myself for not noticing this. i only have 30 days paid leave so was trying to save it for when he got really bad and needed me full-time. he just finished his 4th week and now im afraid my time will run out before he gets "better".
i was trying to do some christmas shopping yesterday while andy was getting his chemo and had my first ever panic attack, i had to go to the bathroom and calm down and just cried and cried.
andy has 4 days off from rads, so i am hoping he will feel a little better with the break.
thanks for letting me vent...MERRY CHRISTMAS TO ALL!!
teresa
Teresa
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CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | 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 | Teresa,
Don't want to be the bearer of bad tidings but for the vast majority of us the period between week 4 of Tx and week 3 post Tx is the worse, especially the weeks post Tx so do what you can to save your leave just in case.
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: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | david,
i have read some of ur earlier post that stated this, so i already suspected this.
the good news is that i can take off longer. my supervisor and fellow managers are VERY understanding (they have been in simular situations). the bad news is that it will be unpaid. i only have 30 paid days. i guess i am fortunate for that. they are willing to work with me--whatever it takes.
it is the unknown that drives me crazy. not being able to plan. too many what if's. ugh!
teresa
Teresa
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CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | 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 | Yes because we all react somewhat differently the unknown can be tricky but thsi site will prepare you for just about the worst case so in that respect it does level out the unknowns. That said I would pretty much count on his most difficult time during that 7 week period above, especially the weeks post Tx.
I sailed through the first 3 weeks but after 15 rads and my second chemo things went south quickly and for the next 7 weeks I didn't fear my cancer as much as I did my 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.
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | currently he is 15 rads/4 chemos down. he missed 2 rads due to PEG tube surgery and 1 when he got a liver ultrasound done and again 1 this week due to Christmas. 25/5 to go.
it is scary to know that he hasnt even really got bad yet. andy is my rock and i dont have my rock to lean on...
Teresa
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CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Teresa
I know you are struggling right now. Im so sorry that your rock is ill. Please know we all care very much. Unfortunately, this is the point where he wont be feeling so good. It usually gets worse as time goes on. The bright side is he is about 1/2 way thru. He will be feeling great by spring time. If you need to lean on someone, please remember we are here for you as well as for Andy.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | thanks christine! i dont know how i could cope without this forum. i am on here everyday for support, and the support is here for me daily!!!! cyber hugs and kisses to all XXXOOO!
Teresa
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CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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