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#184335 08-20-2014 06:22 PM
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Keleigh Offline OP
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My father was diagnosed 12/18 with stage 4 squamous cell. He had double bypass at the end of April. He had a mandiblectomy 6/13. He was to have radiation and chemo after the mandiblectomy. He was released 6/25 from the hospital after the mandiblectomy and was readmitted 6/27 with severe infections. He hasn't left the hospital since. He was to start radiation this past Monday. I just spoke to a doctor because my father doesn't want to do this anymore. He says he is tired and needs a break. I get it. I do. It's got to be very scary, frustrating, exhausting, etc. No matter what I want, it's not my choice to make for him. Only he can decide when he has had enough. The doctor said that the cancer is so bad they don't think the radiation will do any good. My father is supposed to come home tomorrow. How have you dealt with a loved one at the end? If you were that loved one, what would you want people to do for you? My father is very angry and depressed. He is snappy. I try to stay calm but eventually there is only so much you can take before you snap at the person you are trying to help. I wish I knew how much time he has until his suffering ends. It's so hard to see him like this.

Last edited by Keleigh; 08-20-2014 06:38 PM.

daughter of George:
stage IV squamous cell
diagnosed 12/18/13
double bypass 4/25/14
mandiblectomy 6/13/14
released from hospital 6/25/14 to return 6/27/14
radiation to start 8/25/14; only had one treatment
currently in a nursing home
Passed away Dec 25, 2014
Keleigh #184340 08-20-2014 10:27 PM
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Keleigh, I am so sorry you and your father are going through this difficult time. I would suggest getting in touch with hospice. They are trained to help with end of life issues for both if you and can provide lots of resources to help both of you.

The anger is understandable for both of you. This is intense stuff. Hang in there and contact the doctor's office. They can help with setting up hospice care. Your father may change his mind once the infection clears up. I can't imagine being in the hospital that long.


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
Keleigh #184343 08-21-2014 12:40 AM
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I am so sorry to read your post. This must be so terribly difficult for your father, you and anyone else who is close. Being hospitalized for such a long period of time is not easy. I stayed for 2 months after my mandibulectomy.

If you are authorized to speak to his doctor they may have some idea of how long he has. It could be nothing more than an educated guess but it might be helpful. Also check into hospice and a therapist. There are specialists that can help you both.

Best wishes to you both. We are here for you too.



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
Keleigh #184345 08-21-2014 05:43 AM
Joined: Sep 2006
Posts: 8,311
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Yes do get in touch with Hospice. They are unbelievable.


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.
Keleigh #184354 08-21-2014 08:14 AM
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Posts: 286
"OCF Down Under"
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Keleigh your father is in a very dark place right now and my eyes well up thinking about it. My only experience with palliative care was on the other side of a hospital curtain, when the team came around to speak to my neighbour and his wife. They were amazing. When others don't know what to say, they do.

I hope your father and your family find the support you need. You'll be in my prayers.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Keleigh #184364 08-21-2014 06:02 PM
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I am so sorry you are going through this. My question is why the heck did they wait so long to operate and radiate? I get that he needed a bypass - but 6 months??? That's crazy long no wonder his cancer is running wild. Hugs I don't envy you this. My dad gave up too after having a stroke then a broken hip. I totally understand what you are going through.


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
Keleigh #184366 08-21-2014 06:36 PM
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Posts: 3,267
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I also wonder why the doctors would agree on Chemoradiation if they thought the cancer was so bad, radiation would not do any good, which together is really curative treatment, not palliative? Also, I was in a somewhat similar situation, had similar thoughts, whereby after a devastating 5 days of only induction chemo, all my treatments were stopped such as the rest of the 2 induction chemo's, and the Chemoradiation that was to to follow, not by choice from me or really by the doctors, but saving my life was a priority instead, and cancer became secondary even at stage 4. I wasn't able to do any further treatment until a year later, which probably impacted my recurrences.

Maybe your father does need a break, not too long, to collect his thoughts and strength to fight this disease. Maybe a 2nd opinion to help. As your signature says, .."As long as we have hope, tomorrow awaits."

Good luck with everything, and with any decisions made.


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






Keleigh #184516 08-25-2014 01:02 AM
Joined: Apr 2014
Posts: 18
Keleigh Offline OP
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Update: He is still in the hospital. They will not allow him to leave, fearing his safety. If he lives with me or my brother there will be periods where he will be left alone. He is unable to even stand. When he does, he seems to pass out. I think I found a nursing facility. I hope to find out today. I have asked the rad doctor to do another scan to see if the cancer has come back because my father has severe headaches again, which the doctor told me could be an indication that it's back. He hasn't done the scan yet and I don't know if he actually will.

Cheryld: I have the same question: 6 months? He was diagnosed in December and at that time was told he needed the mandiblectomy, rad, and chemo. He didn't even have a cardiac cautherization until mid April. I don't know if the doctors just let him fall between the cracks or if he did not want treatment and just wouldn't tell us. I do plan to ask though because I have medical POA.


daughter of George:
stage IV squamous cell
diagnosed 12/18/13
double bypass 4/25/14
mandiblectomy 6/13/14
released from hospital 6/25/14 to return 6/27/14
radiation to start 8/25/14; only had one treatment
currently in a nursing home
Passed away Dec 25, 2014
Keleigh #184522 08-25-2014 06:52 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Keleigh, another option is home healthcare. They may be able to provide assistance for those times he has to be left alone.

It almost sounds like he told the doctors no and they can't tell you because no release is on file. Do you and your brothers have the required paperwork to be able to get information and discuss the care with the doctors?


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
Keleigh #184705 08-29-2014 07:33 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Okay seriously you need some new drs. Your dad is unable to advocate for himself. With a medical POA you have every right to sit down with the drs. How heck can they even determine what's going on with him without even knowing his status with regards to the cancer? This is guess work and borders on negligence - in order to make a decision and even an adequate diagnosis - you need to know this information before making any decisions. If the cancer is small or localized then he should have rads as it can be curative.

If he's not at a CCC - he needs to be moved to one (likely an up hill battle - but a necessary one.) if he is adamant about wanting to die that's one thing, but he needs to have all the info first - because scary thoughts are part and parcel of the diagnosis and can play marvelous head games with a patient.

Push push push - you need answers. The wait was far too long. Chances are he did fall between the cracks and older people tend to revere their drs. And take their word without question. IMHO most drs are amazing and while you are with them they have your best outcome at heart but they are also human and make mistakes - forget things. No one can advocate for a patient like a family member or loved one. Hugs best of luck.


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
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