| | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Gregg
You made the right decision. Thank you for sharing this. We have had similar threads where the majority of the posts suggested more treatment relying upon the false impression that a hospice could not provide a painless death. While you were faced with a terrible choice, sharing your experience and your mother's courage may very well let another OCF reader spare their parent. Her geriatrician sounds wonderful.
This is still a sad tragedy and personal loss but I believe it will help others now that you have posted this.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | Greg, I know you have been agonizing over this decision. You must feel so relieved to have had a good conversation with your mother and her Geriatrician. Im also sorry to hear his father went thru such a terrible time! Oral cancer is one horrible disease. You have done the right thing by getting hospice involved to help your mother. Ive heard the most wonderful things about their care.
Your post will indeed provide some guidance for future OCF members who are facing the same difficult choices.
Have a wonderful time on Friday with your mother's party!!! Im sure she will greatly enjoy it.
Please keep posting we are here to help you. Best wishes with everything.
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: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | [quote=Charm2017]Gregg
You made the right decision. Thank you for sharing this. We have had similar threads where the majority of the posts suggested more treatment relying upon the false impression that a hospice could not provide a painless death. While you were faced with a terrible choice, sharing your experience and your mother's courage may very well let another OCF reader spare their parent. Her geriatrician sounds wonderful.
This is still a sad tragedy and personal loss but I believe it will help others now that you have posted this.
Charm [/quote]
Ditto!
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Dear, Greg.
I am just reading all of the posts on this thread. First of all, I am very sorry that you have had to make all of these hard decisions.
Secondly, I am so grateful that you and your mother were able to get some heartfelt advice from her physician who can speak from his personal experience. I'm sure that must have been a great relief for you.
I understand what you mean when you say that in some ways, her dementia is a blessing in this situation. Charm made a very good, comforting point when he said that one can die peacefully and reasonably comfortably with proper hospice care. I'm so glad that she will be able to remain in her lovely home. I firmly believe this will be the best quality of life for her.
Your mother must have done a great job raising you, judging by the way you care for her in a loving and responsible manner. Everyone should be so fortunate to have a caregiver such as yourself.
Enjoy the time you have remaining with your beloved mother. I hope you all have a fabulous time at her surprise party!
Please come back here as you are able for support during this difficult time in your life. Many caregivers stay around after their loved ones are gone for support. Perhaps one day you will be able to reach out to others who will be in your same situation.
I have "met" some of the most fabulous, dedicated, and caring people here in these forums. We are all lucky to have one another.
Take care,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Jul 2012 Posts: 5 Member | | OP Member
Joined: Jul 2012 Posts: 5 | Greetings,
You have no idea how much your comments have helped me during this past week of decision making regarding my Mom.
She had a great 88th Birthday. When my Brother went over to her apartment yesterday morning to check at 8 am, he found her up and dressed, make up and hair done and ready for the day. Usually, it's a slow start for her, but I think she decided that it was her birthday and she wasn't going to miss a moment of it.
She had a full day; lunch at my house then back to her apartment to rest in the afternoon. We picked her up for dinner and when we arrived at the restaurant all of our guests were in place when she walked into the room. It was a huge surprise and she was speechless. She had a wonderful evening. It was a joyous and fun occasion.
On the way home, she said that she wasn't going to go to bed right away because she wanted to stay awake and think about the party. We made sure she was ready for bed when we left her apartment, kissed her goodnight and told her to have sweet dreams.
Today I spent the afternoon with her and she kept telling me that her 88th birthday was "her best birthday ever".
She had a wonderful day and I have the wonderful memory of my Mother being surrounded by those she loves on this most special day.
Blessings to everyone.
Greg | | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Greg,
I know it's a hard decision to make. When my late husband had stage 4 throat cancer he made the decison to have Hospice. They are a wonderful orgainzation.
I'm glad your Mom had a great birthday party she'll never forget it. You're a wonderful son your mother is very proud of you.
Take care... God Bless your Mom and your family.
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Greg,
I am sitting here with tears in my eyes. I have read all the posts and am overwhelmed with how this decision became abundantly clear to you. What an awesome geriatrician she has. She, and you, are so fortunate to have someone who takes the time to talk to her.
I agree as well that you are an amazing son. It is so hard. My mom lives with us. She will be 87 in September. I had to send her to the hospital by ambulance last week because she had gotten to the point that she was so weak she couldn't walk to the car, much less pull herself up into it. I knew she had a UTI, but she refused to pee in a cup for me. It's not like that is something I can force!! So, it got bad and she spent 2.5 days in the hospital on IV antibiotiics. She promises that next time she will listen to me and that she will drink more water. Will see!!
I pray that you will have strength over the next few months and that everything would go as well as this decision making process did. I know it was hard for a bit, but it became clear fairly quickly.
Best of luck to you and your beautiful mom. They are definitely precious at this point.
Blessings,
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: Jul 2012 Posts: 5 Member | | OP Member
Joined: Jul 2012 Posts: 5 | Greetings,
My Mom's journey ended yesterday afternoon. I was blessed with being able to hold her hand as she took her last breath.
This forum helped me in so many ways, especially when my Mom was first diagnosed.
She received wonderful care from our local hospice and lived the last months of her life doing the things she enjoyed.
Please know that you helped me and my Mom so much and while sad, I know that she lived her final months with grace, joy and love.
Blessings to all
Greg | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm sorry for your loss, and my thoughts are with you.
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
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