| | Joined: Oct 2012 Posts: 7 Member | OP  Member
Joined: Oct 2012 Posts: 7 | Well, it is suppose to be RT-Day=4 of 8, but things just seem to keep happening.....I read a quote on this site once that really stuck in my head....I hope I am quoting it correctly...it said "Never take your eye off the ball..it may just smack you in the mouth". That is how we feel.
On Friday, the RT called and had to re-schedule all appts. from mornings to afternoons because "They" are having Changes with Drs. So I told Tim instead of 10:30-RT it would have to be 3:00-RT for the next 7-RTs.
Also, we found out that he was taking almost Triple dose of the Duflican (for Thrush) and the Dr won't give another script until he sees him on Wed 10/31 (so no thrush meds for Friday thru Wed)....it was written on the detail descriptions, but Dr didn't go over with us (I realize that is my fault for not paying attention). He also is getting constant Hick-ups..don't know if that should be a concern.
And now today, the RT calls 30 minutes before appt (after I get home from traveling 100 miles to/from work & miss major BD-meeting) to casually let us know that there is no RT treatments today because the machine broke yesterday evening. Ugh...so, I had to tell Tim that instead of making "The No Matter What Last Day of 11/5 will need to be 11/6".
I know this may sound trivial to some, but when it is Count Down Time for the '2nd time'...every little thing IS a big thing.
Tim is Hanging in there....RT=3 of 8 left to do.
Michele
CG to Tim (both 54)= DX SCC 6/12, Stage 4- right base of Tongue/Floor of Mouth: Floor of Mouth & 50% of Tongue removed w/Flap & Full Neck Dissection 7-18-12: Peg, Port: RT 25X of33 w/Chemo 10X Cisplatin/Taxol)
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Well, Michele - "Keeping your eye on the ball" can be very frustrating and you have to juggle things every which way sometimes. You must be doing pretty good, though because your last sentence says "Tim is Hanging in there..." Don't worry about the "not paying attention" part. When I was CG for my son (keep in mind I did not have a job to go to) it was overwhelming keeping track of everything. I was lucky enough that my daughter and a nurse friend of mind came with me to many of the appointments so they could help me remember what was said. You are doing pretty good with handling a job and caregiving at the same time. If you have questions for the doctors, write them down ahead of time and make sure they explain everything so you can get a clear picture. Sometimes they go over things so fast it's hard to follow everything. Don't ever feel that anything you worry about is trivial. Everything involved in caring for a cancer survivor is a BIG thing. Tim is hanging in there, so you hang in there too, Michele. Keep us updated.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | You sound very frustrated and I don't blame you. People try to carefully schedule things - trying to gain some measure of "control" in a time that seems completely out of control - and then someone rips even that away. Time to keep your eye on the PRIZE - that is the end of treatment. There will be these "hiccups" (pun intended) along the way, but you WILL GET THERE. I cannot imagine what their problem is with thrush medication. Good Lord - I think they would have given me prescriptions for gallons of the stuff if I had asked for it. Don't beat yourself up about a misread of a prescription. I find their approach odd at best!
Venting is a good thing - keep on doing it - you are doing a great job as caregiver.
Hugs
Donna
Do
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Not something I imagine your husband would enjoy but you can request a double day... I had one day I missed do to a holiday, and one day I missed due to a break down. I asked to double them up (yes I am a sucker for punishment!!!!!) They did two weeks in a row I had rads in the AM, and PM for two days. ergh.... ;o)
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2012 Posts: 7 Member | | OP Member
Joined: Oct 2012 Posts: 7 | Sorry for the late update...
Tim finished all 33 Treatments..GO-TIM-GO!!! His LAST-RT was 11-7-12. The RT machines Broke 2-Days on the Last week, so they had to Add them to the last End Date. (I know it was just 2 days but, that was like the Life-Rug being pulled from under his feet...very discouraging and he wanted to just say- Forget it!)
He had his last Chemo this past Monday (11-19-12)
Hopefully, it will be �Phase 3�Healing Time�.
From what we have learned...this could take weeks/months/maybe never to recover, but at least it will be some kind of an Upward move. I am not sure of where I need to post next, but I will move to Post Treatment.....After RT Side-Effects are Really BAD for Tim...
Michele
CG to Tim (both 54)= DX SCC 6/12, Stage 4- right base of Tongue/Floor of Mouth: Floor of Mouth & 50% of Tongue removed w/Flap & Full Neck Dissection 7-18-12: Peg, Port: RT 25X of33 w/Chemo 10X Cisplatin/Taxol)
| | | | | 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 | Congrats to the both of you so now let the healing begin.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad you got through it... hopefully it's down hill from here.
Last edited by Brian Hill; 11-21-2012 08:32 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | |
| Forums23 Topics18,168 Posts196,927 Members13,104 | | Most Online458
Jan 16th, 2020 | | |
|
