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Dad's having a tough time #198265
05-04-2019 08:37 PM
05-04-2019 08:37 PM
Joined: Mar 2018
Posts: 56
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 56
Maine
Just wanted to come vent for a bit. Dad's really depressed after this last surgery. It's only been 18 days since his scapular flap surgery and he thinks he's never going to get better. His mouth is still quite swollen and he can't seal his lips, so it's a struggle to eat, drink, speak, sleep, etc. He's drooling all over the place, which he is embarrassed about. He thinks he looks awful and said he feels useless with his arm not working right. He wont go anywhere, and has shooed a couple of his friends away after about 10 minute visits. He can't do any of the things he enjoys right now (like work on his cars or drive) and he's worried about money since he's unable to work. He has a nurse, speech therapist, physical therapist and occupational therapist coming to the house, keeping him pretty much inside most days. Mom and I had to go back to work as we were both on unpaid leave for the last two weeks, so he's here by himself when the visiting therapists aren't here. Not sure what to say or do to him to help him feel better. We have a follow up visit on Monday, which I'm stressed out about. We need to travel 4 1/2 hrs one way to his surgeon's office. I'm dreading more bad news.... I'm hoping he just checks how Dad's healing and has some encouraging words. Cancer is awful. frown


My father's information:
64 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
Re: Dad's having a tough time [Re: Vicky1] #198266
05-05-2019 06:15 AM
05-05-2019 06:15 AM
Joined: Oct 2012
Posts: 1,104
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,104
Toronto, Canada
Do mention your dad’s unhappiness to the doctors when he goes back for the next appointment. They can put him on anti-anxiety meds for now. If radiation is in the cards, then he still has a long way to go. The meds will help him relax a bit an sleep. It’s hard for caregivers as there is not much they can do. There were people my husband did not want to talk with on the phone while he was in treatment so I took those calls. He did not want to explain/complain/appear to be cheerful when he wasn’t. All of that was understandable. He shouldn’t have to play the part of the cheerful patient. The same may be true of your dad.


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: Dad's having a tough time [Re: gmcraft] #198283
05-06-2019 08:37 PM
05-06-2019 08:37 PM
Joined: Mar 2018
Posts: 56
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 56
Maine
Thank you, gmcraft. I did mention that hes been short tempered and down in the dumps, but they didn't seem overly concerned... He actually seems a little better now. He has seasonal depression, too, always has, and its been weeks of nonstop rain and cold temps here in New England. Now that the weather's warmed up and he's been able to go outside, get some sun/ do a little yard work (only a little, because he gets tired) and we've deep-cleaned the house, he seems a little less anxious and depressed.

We went and saw his surgeons today. They said again they got all the cancer in the surgery, that this tumor was very small (9 mm), superficial and they are not recommending any further treatments at this time as far as re-radiation or chemo or immunotherapy. We still need to meet with his RO and MO here in Maine to talk about their thoughts, but right now, we're feeling pretty good. I am afraid to relax though, because it feels like whenever things start going our way they pretty quickly nose dive.


My father's information:
64 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery
Re: Dad's having a tough time [Re: Vicky1] #198312
05-08-2019 08:07 PM
05-08-2019 08:07 PM
Joined: Mar 2018
Posts: 56
Maine
V
Vicky1 Offline OP
Supporting Member (50+ posts)
Vicky1  Offline OP
Supporting Member (50+ posts)
V

Joined: Mar 2018
Posts: 56
Maine
Now I'm having a tough time. frown since dad's recurrance, he's been unable to work, and since his job is a tax free independent contractor situation he is unable to collect unemployment. My mom's been on unpaid leave to care for him and as I live with them I've been paying bills. Just found out the nonprofit where I have worked for 6 years will be undergoing a merger in an unspecified time frame and that the job I do now will be duplicative and eliminated. I will be offered a postion when the merge happens, but exactly what position has yet to be determined and my rate of pay will likely go down to fit me into their pay scale. This is a great time to be thinking of changing careers. Ok, its enough, universe. Uncle.


My father's information:
64 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
Mandibulectomy and free-flap reconstruction 5/30/18
Diagnosis changed to SSC.
Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18
Decided not to do any more Cisplatin after the first one.
Finished treatment on 8/31/18.
3.19 Abscess & Recurrence wide mouth resection
4.16.19 Scapular Flap Reconstruction surgery

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