| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So-o-o-o-o glad for the upswing in progress! Hope the good days keep coming your way!
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 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Linda is now in a rehab/snf in Chico. It's less than a mile from home. That's the good news. There are an unbelievable number of totally inept and uncari9ng people there.I was so angry last night that it was making me feel sick to my stomach. Around 1 am we finally got a nurse in there who actually had a clue what she was doing. Today has been somewhat better but this place is so understaffed that everyone is running around completely frazzled. Yesterday one rn actually started crying in Linda's room. Unbelievable. At least Linda keeps improving, in spite of it all.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | 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 | Welcome my my lie from January to march - the place my dad was in was inept and negligent and yes - uncaring. So glad she is doing better. Be diligent.. You are her advocate, hugs!
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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Sounds like Linda has been making some good progress if she has been stepped up to a rehab center. Hope she continues to improve quickly so she can go home soon.
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: 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 | Great for Linda and I feel for you.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | David:
So sorry about the rehab problems - more and more these days I hear things being bad in such facilities and also hospitals. Had a bed-confined friend who pushed nurse buzzer for someone to come and take her to bathroom, and she suffered without anyone replying most of the night - hours (in tears). Her husband started staying all night after that, so it's unfortunate you have to deal with those problems along with Linda's healing. Our thoughts and prayers are with you and hopefully she'll be able to go home sooner than two weeks.
Julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | David,
have you visited other facilities? It might be worth transferring. My dad's facility was excellent but did not look that great on the internet - very important to visit in person.
Best wishes to you both.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | It's good Linda is making progress and I'm so glad she has you to be her protector and buffer. You must have had an effect on "the help" since things seem better today but sorry it's been so rough on you, David. Maybe Linda won't have to be there too much longer? Maria's suggestion to find another facility might be something to think about, especially if one that 's not too far away.
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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sorry to hear about the bad experiences in rehab. I know very well how it is having been in one for three months myself, back and forth to the hospital twice, the last was for 25 days, when they almost killed me from dehydration, had acute kidey failure, and c-diff I caught there. Being bed ridden from paralysis, I had to be lifted out if bed with a hoyer lift with two nurses, and that was only after two months stay and my return from the hospital. Prior to that, I was in a floor where patients don't leave on their own. I asked about rehab, showier, and aide laughted and said, baby, you dont get thst on this floor, do you see anyone walking around, and she was right, few visitors, and no patients out of their rooms, so there are differences in floors. A family representative has to have a presence there, otherwise the patient is ignored. If a health condition arises, which they are unqualified to handle, you can go hospital. I was surprised when I needed an IV, they could not even put one in, and called my family called 911.
Last edited by PaulB; 07-19-2013 12:53 PM.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | After 3 1/2 days i9n the rehab facility Linda had to be taken to the er. Her blood pressure was 50/38, possibly because they increased the dosage on opiates to keep her quiet, (one nurse had complained that Linda kept pushing the call button every few minutes and the nurses couldn't get "their" work done. Turns out there was good reason for Linda's actions)She was extremely dehydrated, kidneys were beginning to fail and had a urinary tract infection. By this time, she was totally disoriented, bordering on delirious. She was admitted to the hospital and went back to ICU. She was anemic and needed 2 units of blood. I can not imagine how all this could happen in a medical facility where their are people who are supposed to keep an eye on such things. I went to get her belongings from rehab, which were not packed up as the nurse who had called me said they were, so I tossed everything into a bag and prepared to storm out of there. In the hall I encountered one of the nurses who had complained about how much of "His" time Linda was taking up. As I walked pass he said "Have a good day". Now folks, those who know me consi9der me to be a laid back, easy going kind of guy and mostly that's true BUT, there are lines you shouldn't cross and damn near killing my wife is a biggie. I stopped and said "I don't know if you people have ever had to deal with a pissed off Marine before but you have one now." He made the error of asking what I was mad about and I unloaded on him. They have not seen the last of me.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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