#60576 04-09-2007 08:15 PM | Joined: Mar 2007 Posts: 1 Member | OP  Member
Joined: Mar 2007 Posts: 1 | Hi everyone - my 72 yr old mother was diagnosed with oral cancer late last year (no idea what stage etc, think it was BOT but could be wrong). She went through 6 weeks of radiation and then we waited for things to get better............ They didn't.......... She was never able to regain the ability to eat; her mouth was dry and sore and you could tell she was worried.
A PET scan was finally done in February of this year and we were given the bad news that Mom's cancer had spread to the tonsil area and her lungs. Chemo was not recommended by two different Oncologists (is not curable) so now we have Mom at home, hooked up to a morphine pump with palliative care nurses coming in every day.
This has been extremely hard on our family but I do have to express my extreme gratitude for the palliative care system in Canada. They are bending over backwards for my parents and the care (drugs, home support, etc) are 100% covered.
I have been reading this forum for the last few months and decided I needed to tell a bit of my Mom's story and how a caring society and close family is making her final days as peaceful and serene as possible.
I want to thank all of you for the comments you have posted because I have drawn strength from a lot of them. I wish you all well with your personal situations and I will stay in touch.
Karen - loving daughter and part time caregiver of of Mary. | | |
#60577 04-10-2007 05:05 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Karen, I'm so sorry your mom's cancer recurred so fast. It is so rough--for patients and caregivers--going through the radiation, it just seems completely unfair and wrong that the cancer can return so quickly. I'm glad she's getting the palliative care she needs and that she is with you for her remaining days.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#60578 04-10-2007 05:27 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Hi Karen,
I'm so sorry to hear about your Mom's battle. I couldn't agree with you more about how lucky we are as Canadians to have the care we need without worrying about the cost.
Where are you in Canada? I'm in Calgary, and received all of my treatment at the TOm Baker Center here.
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#60579 04-10-2007 10:39 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Hi, Karen, I,too, am very sorry to hear of your Mom's condition. But am so glad to know your family has the palliative care support system there. Please know that your family will be in alot of prayers going forward. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#60580 04-10-2007 01:31 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Karen
My heart goes out to you and your family .. i will pray for your mom . You are lucky to have a wonderful family as well as a great health care system !!!! Cuz even with insurance it gets crazy expensive. Best wishes to you all and my thoughts are with you.
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#60581 04-10-2007 04:56 PM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2007 Posts: 168 | Karen, I will pray for you and your family. I will pray for your mother to have a peaceful journey.
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
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#60582 04-11-2007 06:19 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2005 Posts: 325 | Karen, It just doesn't seem right to go through all that and then have it flair back up and spread. My thoughts and prayers are with you and your Mom, hope you can spend some good time together. Laugh, talk and remember together.
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#60583 04-15-2007 08:16 PM | Joined: Apr 2007 Posts: 4 Member | | Member
Joined: Apr 2007 Posts: 4 | Hi guys, it's me Karen. My Mom is now in the hospital with some delusional and parnoid issues. Unfortunately they are directed at my Dad who has suffered enough without this happening..... He is taking it well but it still hurts him - they've been married for over 50 years and my Mom thinks he's trying to harm her and having affairs.............
We are all rolling with the puches and staying with Mom mentally, as much as we can. Dad is concerning us as well - I stayed with him the night that Mom went to the hospital and hope it made a difference for him.
We are struggling as a family but we seem to be doing a pretty good job of letting Mom know how much we love her and making her final days as comfortable and peaceful as possible. I'm sure this is the way to go............... any other ideas for me?
Thanks guys,,,,,,,,,,, | | |
#60584 04-15-2007 08:35 PM | Joined: Apr 2007 Posts: 4 Member | | Member
Joined: Apr 2007 Posts: 4 | p.s. Dragan - we are on Vancouver Island in British Columbia........... | | |
#60585 04-16-2007 03:53 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Karen,
My wife and I love the island. That's where we're going to retire. We have some property near Telegraph Cove that I hope will be our home address soon.
I'm feeling your pain. My Dad is suffering with inoperable lung cancer as well. He went through a complete series of radiation and had one chemo treatment.
The chemo made him so ill that he was hospitalized twice, and they will not continue with additional treatment. Now, whatever the cancer will do is anyone's guess.
We do have an amazing system here. It's not perfect by a long stretch, but at times like this, it's wonderful not to be faced with additional worry.
I wish for your Mom to find peace. With the love of her family I'm sure she will. Be there for your Dad too. I'm thinking about you all
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#60586 04-16-2007 02:00 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Karen, hope you don't feel that this is presumptuous, but if youall haven't started planning the "after passing" things to be dealt with [obiturary, funeral or memorial service, who will call what family and friends, etc.] now is a good time to start that process. If those details are in place, the family can spend some "regrouping time" together without the added burden of having to deal those immediate pressing details. Wishing you well and saying a prayer for your Dad. This must be so hard for him. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#60587 04-16-2007 04:31 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Karen - I'm glad that your Mom is getting the care that she needs and the family support that you are all providing for her. I'm sure it must be a trying time for your Dad as well. I can well understand your gratitude for the Canadian system of health care. My children and I were Canadian residents (living in Quebec) for a couple of years and it was amazing, the wonderful health care we received while living there. My thoughts and prayers are with you and your family.
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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#60588 04-16-2007 04:47 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Karen, Please ask if a different pain option is available for your mother. Morphine sometimes causes paranoid wacky behavior.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#60589 04-16-2007 07:04 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Karen,
I dont have words to express my deepest sympathy , I hope that you can find peace in the memories you have of your mom and for your dad I hope I know he can also, knowing that she more then likely dosent mean these things she is saying. It is very possible it is som of the meds like mark said. I wish you , your mom and your dad all the best and (((HUGS ))))) from NY
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#60590 04-21-2007 07:39 PM | Joined: Apr 2007 Posts: 4 Member | | Member
Joined: Apr 2007 Posts: 4 | Amy, we pretty well finalized the after passing issues today. It was not at all presumptuous of you to bring it up. We are making decisions as a family - all have input. We are now taking turns staying at the hospital with Mom, day and night. We know the end is near; breathing has changed, etc.
Dragan, Mark, Anne-Marie and Shar - thank you so much for your advice and well wishes. This forum has been a source of information and inspiration for me and some of my family members.........
Karen | | |
#60591 04-22-2007 09:16 AM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Karen,wishing you all well. Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
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#60592 04-22-2007 12:07 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Karen - Sending Peace and Love to you and to all your family.
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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#60593 04-22-2007 05:05 PM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2007 Posts: 168 | My heart is with you and your family. Don't forget to take care of yourself as well.
Lee
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
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#60594 04-23-2007 02:04 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | .May your journey be made easier by the love of your family
li in the uk
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#60595 04-26-2007 09:17 AM | Joined: Apr 2007 Posts: 4 Member | | Member
Joined: Apr 2007 Posts: 4 | Hi everyone - just a quick note to let you know that we lost Mom on April 24th. She was surrounded by family during her last few days and she passed away peacefully.
Thank you for all your well wishes and encouragement. :-)
Karen | | |
#60596 04-27-2007 02:26 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Karen, I am sorry to read of your Mom's passing, but am glad that it was peaceful for her.....Take Care, you are in my thoughts and prayers, Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#60597 04-27-2007 02:55 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Condolences Karen
Liz in the uk
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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#60598 04-27-2007 07:11 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | My deepest sympathies to you and your family. She is now at peace.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#60599 04-27-2007 09:21 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | I'm So Sorry for Your Loss
Tim
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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#60600 04-27-2007 03:15 PM | Joined: Jul 2006 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2006 Posts: 68 | i'm sorry to hear about your mother.my prayers are with you.
lynn
linda anderson
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