#5985 08-31-2005 04:08 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | OP  Gold Member (100+ posts)
Joined: Jan 2005 Posts: 108 | Hello friends; It has been an interesting 6 weeks or so since I last posted. I have been in hospital with yet another recurrance and the affirmation that if there is a hard way to do something I can generally find it out.
The cancer has now spread to the bones in my neck. In fact the severe discomfort that I have been whining about to several docs over the past while is due to this new invasion.
A bright young physician in Emerg found on an xray that C5 was MISSING. The vertebra had literally disintegrated and left me with damage to the spinal cord and of course plenty of pain.
The next two weeks were spent getting acknowledged pain levels under control for the first time in months and the set up of palliative care in my home.
Because of the cord damage, I have lost use of my left arm (I am left handed) and retain only partial use of the right arm. There are nurses who visit twice a day to bathe and dress me, physio and OT help to make the most of my limited arm mobility. As you can see, we have got a way to use the computer for now at least.
I feel surprizingly well and am so pleased to be able to remain at home.
It is a sad commentary on the medical profession that my situation went unnoticed and undiagnosed for so long, but since the get go there seems to have been a blind spot surrounding me because my cancer didn't follow the usual track for SCC.
I have a very firm resolve to live life as well and fully as I can for the time that is there...who knows. Right now there is a period of stability happening for which I am grateful.
I am open and eager for tips and tricks to help my husband and I go through this new adventure in our lives together. These caregivers of ours are pure gold!
Thanks for stopping by,
Fran B.
SCC Base of tongue diag. April 04 Stage IV, mets to rt. neck multiple nodes 35 rads+8 boosts First recurrence Jan05. Rt.rad neck dissection Feb02/05. Recurred with bone mets in neck July 05.
Committed to survival with dignity.
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#5986 08-31-2005 04:43 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Fran,
I am truly sorry to hear of your recurrance of this bastard of a diaease. Your posting answers
alot of questions about your attitude. I am humbled by your courage.
I hope you can enjoy whatever time you have left. We never really know when that time is near. Glad to hear they have the pain under control.
You are right on about caregivers, There is a special place in heaven for them!!!
Love Ya, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#5987 08-31-2005 05:50 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Fran
My goodness you have had a time of it!
The cancer has not affected your bright spirit I see, I hope that from this point on the Doc`s have a handle on things for you and keep your pain level to a minimum.
Warm wishes to you and your hubby.
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#5988 08-31-2005 06:33 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Fran,
I am in awe of your gracious bravery, your resolve and your willingness to share this with us.
I take it that since you at home you are in hospice care. They are very well equipped to help your entire family through this time in just about any area.
Journal, say things that need to be said, make recordings and/or videos if you have children or grandchildren.
I will keep you and your family in my constant prayers.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#5989 08-31-2005 10:59 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Fran, you are in my thoughts and prayers. Keep Looking Up! God Bless, 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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#5990 08-31-2005 12:56 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Fran,
I am so sorry to learn of your, yet another reoccurence. You are so brave. I am glad they are now able to keep your pain under control. Keep your chin up. You are a very brave lady. Keep posting. Hopefully we can help you and your husband down this path.
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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#5991 08-31-2005 01:14 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 | Fran, you and your husband will be in my prayers too. Amy
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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#5992 08-31-2005 01:14 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Fran,
You have posted a post that each and every one of us fears ever having to post. Some here have already had to post on a recurrance. Some of us will have to in the future and your post will be an inspiration to us. You show such courage and I'm glad there is a calm period for you to catch your breath a bit and make a plan for whatever is to come. You already know about spending time wisely, living in the moment, etc. My prayers are with you and your family.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#5993 08-31-2005 01:42 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | Fran being with my husband at the last taught me one thing....to enjoy each and every moment to the fullest. Pray together and let love fill your every waking day. I admire your courage and your strength.
My prayers are with you and may God bless you and give you comfort and peace always,
Barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#5994 08-31-2005 03:12 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Fran, I am so saddened to learn that you had yet another recurrence AND one that seems to have been missed for so long while leaving you with unmanaged pain. But thank God that is now past and your pain is under control and you are getting the help you need to live your life as fully as you can right now--and live it at home with your husband.
You and your family and your caregivers are in my prayers and thoughts.
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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