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Discharge from Hospital after a month #198999
09-09-2019 02:23 PM
09-09-2019 02:23 PM
Joined: Jul 2012
Posts: 3,253
NYC
P
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
PaulB  Offline OP
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,253
NYC
Hi all!!

I’m being discharged from the hospital tonight after a month of being a resident, and am going into a nursing home for rehabilitation for three months. Well, that’s at least the time I have on the books to cover my stay and get better after breaking my hip, so it’s somewhere up to December I have!

I may have wrote here before of the cancer suspicion, so as soon as I can I will have a PET scan! It was also here for a few other issues that popped up and prolonged my stay, i’ll be just as glad to get out of this place as soon as possible which has been no picnic or has quality of care. One day i’ll wrote all about it! Right now I still can’t walk after a second surgery for a fractured hip, but the therapy and my care has been as it should which delayed recovery,

It’s good to get out of here!


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






Re: Discharge from Hospital after a month [Re: PaulB] #199001
09-09-2019 06:12 PM
09-09-2019 06:12 PM
Joined: Jun 2007
Posts: 10,409
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
Thats great news, Paul!!! Im so glad you are getting into another facility where you will be better taken care of. Hoping your new place will be everything you need, plus have an attentive staff who will help get you back onto your feet again.

Paul, you sure have alot going on!!! Wishing you good luck with everything!!! Always remember... we all are with you in your corner, cheering you on smile


Christine
SCC 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 smile
Re: Discharge from Hospital after a month [Re: ChristineB] #199002
09-10-2019 05:14 AM
09-10-2019 05:14 AM
Joined: Oct 2012
Posts: 1,155
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,155
Toronto, Canada
I’m glad you’re getting out of hospital. You are just amazing — your persistence, knowledge and that you’re still trying to support members of this forum when you’re in hospital. Thanks so much, Paul.

Wishing you smoothing sailing.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Discharge from Hospital after a month [Re: PaulB] #199004
09-10-2019 09:22 AM
09-10-2019 09:22 AM
Joined: Jul 2012
Posts: 3,253
NYC
P
PaulB Offline OP
Patient Advocate (old timer, 2000 posts)
PaulB  Offline OP
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,253
NYC
Thank you Christine and gmcraft!

You both brought a tear to my eyes, and thank you! I’m always glad to make any contributions that are helpful, especially for newly diagnosed or anyone for that matter!

I thank you both for keeping this site running, and for people like me who can contribute once in a while.

I’m 10 years out from my original diagnosis, and hope my latest mishap is just a mishap and not cancer, and can move along and try to be helpful!

Thank you,
Paul

Last edited by PaulB; 09-10-2019 11:38 AM.

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






Re: Discharge from Hospital after a month [Re: PaulB] #199008
09-10-2019 02:50 PM
09-10-2019 02:50 PM
Joined: Jun 2007
Posts: 10,409
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
No, Paul.... THANK YOU!!!!! We're all in this together smile

Paul, you are a very special member of OCF!!! You've been an active OCF participant selflessly helping thousands of others by sharing your vast knowledge of OC. At OCF, we're all very lucky!!! I always try to think positively smile Theres many knowledgeable members who have a great understanding of OC plus anything/everything about the numerous different areas relating to OC. Different members have different areas of strength, together theres an abundance of info relating to OC. Even though we have many knowledgeable members who gladly pitch in to help others, I dont think of you as one of the knowledgeable members. You belong to a different group of OCF members. Over the years, I can count on one hand the very few extra special members who are overly skilled with their advanced knowledge (always learned from reputable sources) of important OC subjects/news. You my friend, are part of that very special elite group!!! Only the most knowledgeable OC patients/survivors/caregivers can come close to having such in depth knowledge about OC plus everything else relating to it. Thank you Paul for always graciously sharing what you have learned from doing years of your own independent research to learn everything you can relating to OC. I greatly appreciate every post you make as no doubt the receiving member does as well. Its not easy for you right now yet even being laid up, unable to walk you still come to the forum to share your wisdom with others. What a wonderful, shining example we all should strive to emulate. Thank you for always so generously sharing your support and knowledge.

As far as another cancer diagnosis goes, NO!!!! Thats NOT allowed!!! ABSOLUTELY, POSITIVELY NOT HAPPENING!!! There have not been very many of us old-timers (longevity at OCF, NOT our ages) who have endured year after year of seemingly never ending cancer diagnosis, medical tests, surgeries, treatments, doctors appointments, recoveries, biopsy false alarms, and the worst of all of our fears....recurrences. There definitely are very few of us who have survived 3 or more rounds of OC along with many other terrible health conditions. You've been here for so long you must have heard all the usual phrases we share with those going thru a cancer diagnosis scare. My favorites are "dont borrow sorrow from tomorrow" (not sure of the exact wording but Im pretty sure you know the phrase Im thinking of) and "its NOT cancer til the biopsy says its cancer". . It took me until my third OC diagnosis until I finally stopped my useless worrying every time I had a lump/bump or new mouth sore. I realized worrying has never changed any test result and never will. I also finally figured out instead of my worrying and "what if" thinking which is completely unproductive and unnecessary, I need to go out and make memories with my family. I felt like the weight of the world was off my over-burdened shoulders when I woke up, stopped procrastinating, went out and actually lived the life I was putting off for a few more years. I know you must feel like you have too much time on your hands. I learned that by doing something positive and/or productive it helped make me feel better about my current situation. If you are dealing with cancer again, we're here to lean on anytime you need us. Thru thick or thin, our OCF old-timers family always sticks together, no matter what smile

Be well my friend!!!!
(((((HUGS)))))


Christine
SCC 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 smile
Re: Discharge from Hospital after a month [Re: PaulB] #199009
09-10-2019 03:08 PM
09-10-2019 03:08 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Wow, so glad you are busting outta the place! I am sure that some of us here have had long stays inpatient, and depending on the facility-- sometimes the care can get Worse, it seems, the longer you are there!

Can you get a PET with contrast ordered, while at the nursing facility? Surely they will not make you wait 3 months.

Anyway PaulB, I'm with you.....And I hope there is no more cancer found.

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Discharge from Hospital after a month [Re: PaulB] #199033
09-12-2019 08:19 AM
09-12-2019 08:19 AM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Well I haven't been on in a little while so I'm sorry I'm not completely up to speed on what all your going through but I do have my fingers crossed that the PET scan shows NED! Glad you're out of the hospital and I hope you continue to get comfortable at the care facility. I'm hoping the next few months fly by for you and you're headed home before you know it. Keep us posted.


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
Re: Discharge from Hospital after a month [Re: PaulB] #199048
09-13-2019 07:40 AM
09-13-2019 07:40 AM
Joined: Jun 2019
Posts: 128
D
Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
D

Joined: Jun 2019
Posts: 128
So glad you're getting out. So sorry to hear you've broken your hip though, what a pain! crazy

I love reading your support and advice, please never change. It's so helpful for us newbies.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses RT Start 17th Sept '19
2x cispltin
Re: Discharge from Hospital after a month [Re: PaulB] #199049
09-13-2019 09:33 AM
09-13-2019 09:33 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
I'm healing from a broken hip myself ... it's not cancer, just one of those things ... we suspect the bone was broken before I fell, and as far as causes, the only thing we've turned up is some vitamin deficiencies (and who knows what chemo could have done, of course). I hope yours heals soon ... two surgeries? Yikes! You've been through too many wringer already to need this one too. Once you get moving, it does get better, really. The surprise I found was some calcification in the joint (sclerosis, they said), and that's making complications ... but if that is a problem for you, it will show up on the x-rays as you heal. (I don't know what they do about it ... I don't even want to ask, sigh.) Just wanted to mention it in case you have some weird pain that nothing else will quite explain as you heal.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Discharge from Hospital after a month [Re: PaulB] #199214
10-08-2019 08:45 AM
10-08-2019 08:45 AM
Joined: Jan 2014
Posts: 31
Texas
B
bwb Offline
Contributing Member (25+ posts)
bwb  Offline
Contributing Member (25+ posts)
B

Joined: Jan 2014
Posts: 31
Texas
My mom broke her hip on radition day 23 of her recurrence. The things were only very, very, very slightly related. She did great with the broken hip. The people in radiation teased her that she was faking it because they'd hever had a pateint move so well after the surgery she had so quickly. That repair failed and she had a hip replacement. And none of that required a rehab stay. She also did not have a rehab stay after her major 12 hour surgery despite the doctor being worried I wouldn't be able to handler her care because it all seemed like a piece of cake after the rehab stay she'd had a year before (between cancer bouts 1 and 2) when she got pnumonia at the end of her first cancer treatment and spent 30 days in the hospital most of them heavily sedated and literally could not move her legs at all independently when she got out. 100 days later she could walk a couple of football fields and was feeling so much stronger. If she could get there from not being able to move her lower body at all, you've got this rehab thing licked, I'm sure.


Caregiver to mom Chris, symptoms started 12/18/13. Biopsy 1/18/14, Diagnosed t2n2 2/3 2014. 3x Carboplatin and Taxotere finished 4/21/14. Chemo/Rads 8 erbitux 36 rads began 5/12/2014. End 6/20/2014. Pnuemonia 6/23/2014. 1 month in hospital 3 in rehab. PEt NED 11/8/2014, T3 recurrence DX 3/4/2015. Hemiglossectomy/mandiblectomy 4/27/2015. 30 rads end 07/24/2015. 4 years NED.
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