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Joined: Oct 2013
Posts: 58
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Joined: Oct 2013
Posts: 58
Arrived at SNF...12 hours later have only received I dose of pain meds. Staff arrived at my bedside asking me who I was, oh wait were you here on my last shift...fighting to get out....FAST.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
Joined: Oct 2013
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First night at SNF what a nightmare. Trying to get homeheath mainly for trach care and peg supplies....any suggestions welcome.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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The trach needs daily care. If they arent doing it then speak up and advocate for yourself!!!

Can you talk?

Do you have anyone who comes and stays with you? a friend or relative?

Sounds like you need to get someone there to help you get the very best care. Always remember and dont let them forget...they work for YOU. If you have to be a squeaky wheel to get proper attention, do it.

Hopefully you wont be there very long. Good luck!


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
Joined: Oct 2013
Posts: 58
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Joined: Oct 2013
Posts: 58
I had gotten a great semi permanent trach with passey Muir the day before I was d/c I arrive here they want to take out and put in the one with the disposables because they don't have the cleaning trays, my husband and promptly sat down and cleaned it with supplies we brought from the hospital this situation is surreal...I am trying to talk to anyone who will listen. Waiting for husband to arrive to call insurance company case management anyone who can help. Thank you Christine for letting me know I'm still heard.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
Joined: Jun 2007
Posts: 10,507
Likes: 2
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Patient Advocate (old timer, 2000 posts)

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Im glad you arent by yourself! Also happy to see you have the possey muir valve trach, I dont know why that isnt the standard for trach patients. Let your husband be your advocate. He can also ask us any questions and we will help him as well. Dont worry! You will get past this bad period and things will get easier. Im in your corner, lean on me if you need to and I will help you get thru this.



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
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
So glad your clean and on the road (even if it's a bit rocky ) to a recovery - 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: Oct 2013
Posts: 58
Supporting Member (50+ posts)
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Joined: Oct 2013
Posts: 58
Hi everyone just got home after 11 awful days in the SNF. I have never felt so vulnerable and afraid. However those days are behind me and I'm greatful to be home. Onward to the next chapter of my recovery. Scheduled for another surgery mid December and this week I meet with the oncologist to discuss radiation. My biggest issue right now is pureed foods. I'm trying to use my gtube for meds only until I don't have a choice. Any suggestions. Thanks for being here. Sandy


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
Joined: Oct 2011
Posts: 225
"OCF Down Under"
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"OCF Down Under"
Gold Member (200+ posts)

Joined: Oct 2011
Posts: 225
Hi Sandy, wanted to put my bit in with a quick g'day. I'll be following your progress and celebrating every step forward. Watch out for constipation from the pain meds, and try to take one day at a time. My very best to you, dear.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Joined: Sep 2006
Posts: 8,311
Sorry, what's SNF?


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 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
SNF: Skilled Nursing Facility or Saturday Night Football?


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.)



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