| | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) |  Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | So sorry to hear that Doug needs hospice. If you are experiencing frequent panic attacks, maybe you could access some support from a therapist/counselor at the hospital or the hospice. Just being able to verbalize to someone your fears and worries will help you deal with these anxious times.
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.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Honey,
Like I said in my PM. You have others with you don't you? I am really hoping you are not alone. Write me. Praying for peace.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2013 Posts: 17 Member | | OP Member
Joined: Nov 2013 Posts: 17 | Today we meet our primary nurse from Hospice and tomorrow a social worker is coming to see me.
It's hard to post here, I'm in fear of scaring someone whom is just starting this journey.
We are now on a two hour around the clock pain schedule and most days I can barely see straight. I am hoping this new nurse (we've had 4-5 here in the last two days) can schedule a night nurse to stay with him at least once every other week through the night so I can get some rest. It's been months since I've been able to sleep through the night.
His pain meds have tripled within 48 hours and my poor husband still has terrible break-thru.
You can see the tumor growing daily and it scares the hell out of me, so many things scare me these days.
I don't know how much time he has, my only prayer is that he can find comfort in whatever time we have left.
He is in and out of consciousness most of the day, but when he's awake he is mostly miserable.
Family comes more now - it's heartbreaking that it had to get to this point before they finally started.
I know a lot of it was Doug's fault, he's always hated and still does hate what the AWFUL FLIPPING DISEASE has done to him and his once gorgeous self.
I try to remind him everyday that he is still the man I married and my love has only grown.
Thank you all for being here for me, being a caregiver is quite a lonely job.
Cheryl
1st post under(Introduce Yourself Re:I've waited too long)
Caregiver to Doug
Dx 8/31/10
Stage 4 HPV(?) SCC Tonsil, Tongue, Jaw and Lymph-nodes
98% Glossectomy
Bilateral Neck Dissection x 2
Trach and PEG indefinitely
Palliative weekly Chemo
Carboplatin-Pemetrexed-Erbitux
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Cheryl,
Don't worry about getting out your story. It is horrible and I'm sure as hard as it may be for some to hear, it is important for you to be able to have found someplace where people understand, somewhat, what you are dealing with. We all have a choice in how much we want to read. Your options of having an ear to bend, a shoulder to lean on are much more limited.
I am so sorry where things are now. I can't even imagine what you are going through. I pray with you for comfort for Doug. I also pray for comfort for you and for more people to step forward and give you at least some type of rest.
What we see you going through is a person so fortunate to have you by his side to feel your love. It is a beautiful thing indeed. May you feel His presence in all you are and all you do. May His grace be sufficient for you and Doug, now and forever.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Im so sorry, Cheryl. Post when you are able to. Its okay to post your true feelings. Everyone needs to let that out once in a while. This is a save place to vent. While the horrors of your situation cant be completely understood, we do empathize with what you are going thru.
((((HUGS))))
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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Oh, Cheryl, your post is heartbreaking. I feel your sadness, pain, and overwhelming loneliness. I am praying for you and Doug and hoping you get some much needed sleep. The best thing you can do is know that you are doing everything you can. Keep posting. I wish that there was an easier path through this time. You are not alone.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Cheryl, I'm so sorry that you and Doug are facing this pain and sadness. You've both been through so much, and fought so hard. I hope that the new hospice nurse can reduce Doug's pain. Please don't worry about posting too much truth, this thread is for you and you don't need to please or protect anyone here.
(((HUGS)))
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Nov 2013 Posts: 17 Member | | OP Member
Joined: Nov 2013 Posts: 17 | Oh my G-d Nurse had to come last night. He is starting to bleed out. They can't say how much time he has but they just sat me down and told me he will eventually start bleeding out thru eyes ears nose throat. I am shocked and broken, never even occurred to me he would die so awfully. I feel so unprepared, how could they not of told me this. They did say they don't know when only what the ugly details were. I am petrified
Cheryl
1st post under(Introduce Yourself Re:I've waited too long)
Caregiver to Doug
Dx 8/31/10
Stage 4 HPV(?) SCC Tonsil, Tongue, Jaw and Lymph-nodes
98% Glossectomy
Bilateral Neck Dissection x 2
Trach and PEG indefinitely
Palliative weekly Chemo
Carboplatin-Pemetrexed-Erbitux
| | | | | Joined: Aug 2013 Posts: 33 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2013 Posts: 33 | You and your family are in my thoughts and prayers. I am so sorry you are hurting and having to go through all of this.
Theresa
Age 36 Mommy of 4 Diagnosed 8/5-tongue cancer T2 tumor with partial-glossectomy 8/13/13 along with neck dissection HPV positive Path report all clear margins! 11/5/13- enlarged taste bud and mild Dysplasia Surgery planned for 11/12 11/12 cancer cells removed Staged increased to stage 3. T3N1 Chemo and rads started 3/4/14 33 rads and 6 chemo Peg tube 3/7/14 37 radiation and 8 chemo treatments Completed treatment 4/25/14 recurrence 12/1/15 surgery for Hemiglossectomy 12/11/15
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Cheryl, wish I could help you. Are you keeping Doug at home or is he able to go I to the Hospice for full time care with you staying with him? Is Hospice giving you a nurse 24 hours at home? Please ask them for more help. You should just be his wife now. Not his nurse..
Oral cancer is not a nice way to die. I truly am so sorry.
Keeping you both in my prayers,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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