#2998 07-13-2004 01:23 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) |  Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | I'll limit my reply to no slap intended; I see the world through grief-colored glasses now.
My apologies to all.
Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
| | |
#2999 07-13-2004 03:42 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Honesty is a hard policy, it would be nice to think that everyone gets a happy ending in this endless fight.. Not all of us will MAKE it, but family time, time to be at peace with oneself, this also so important, Docs are good at the medical fight but they sometimes lose sight of us as people.. the one thing that is true you can run but you can't hide.. For this forum to be of real help we all have to be honest and open with each other, if that truth is then hard to bear, at least the truth is given by friends, who are travelling or have travelled the same road. So I wish peace to all.
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | |
#3000 07-13-2004 04:27 AM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Christine,
My apologies to you, sometimes I snap! Maybe some of my own advice on posting should be directed at me.
Glenn | | |
#3001 07-13-2004 05:40 AM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | | OP Senior Member (75+ posts)
Joined: May 2004 Posts: 80 | dear all,
thank you for the feedback, advice and sharing your experiences with me. i too thought about whether or not i should make my original post to begin with as i was afraid that it might bring up a lot of difficult issues for survivors and caregivers alike, but decided that this was the only place i could hope for open and honest feedback as well as a wealth of information. i am sure everybody who's here has had to deal with these issues and reflect on them at one point or another. therefore any feedback from people here is quite illuminating. i know it's not easy to recount one's own painful experiences in order to help another. thank you all for your generosity of spirit.
my family and i have had some discussions and we all agree that 1) my sister is the person to decide how she wants things to go and we will be supportive of anything she decides and try to our best ability to carry out anything she wishes; and 2) we don't want her to suffer if there is no reasonable hope of recovery. frankly, we've all questioned at different times the sanity of the various treatments which sometimes seem harsher than the disease, but we've done what we could to help her get through them so long as there was the hope that she'd get better. now our priorities are to make her comfortable and reduce her suffering as much as possible.
the difficult thing for us now is discussing things openly with her without killing her spirit before her body gives up. as well, pain management is a difficult issue since my sister has always had reservations about taking pain meds. finally, it will take a bit of work for us to get other family and friends to understand that if my sister doesn't wish to fight any more they should lay off her and give her peace rather than encourage her to fight for some non-existent chance. lately this kind of talk has been making my sister very uncomfortable which probably explains why she doesn't want to see many people.
the latest is that we heard from USC's tumor board. they have no treatment recommendations other than considering palliative measures. we have our meeting with my sister's oncologist today and i'm wishing him strength to discuss my sister's medical options with her openly and kindly.
the most difficult thing for me is that i must return to toronto tonight as i've already postponed my return twice and can't do it any more. i have no idea in what state i'll be boarding the plane.
be well.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
| | |
#3002 07-13-2004 06:28 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Gita,
You should get the paperwork processed for social security disability benefits soon. Even if treatment options open or something changes, just the diagnosis would get her approved pretty much instantly and automatically. I believe they would also include medicare with that.
For ALL, I know each time we see one of our "family" here in this community face what I would call horrible news, we all get a little over sensitive and emotions flow. Our love for each other, our compassion and our fears get so intertwined. The important thing for us all to remember is that nothing should be taken personally. As in any happy family, there will be disagreements and emotional collisions from time to time. It takes tremendous courage to tell others of our pain and to use honesty in all of our interactions. I have really grown to love all of you and I pray for all of you for continued blessings, comfort and healing.
God Bless,
Ed
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
| | |
#3003 07-13-2004 07:59 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Gita
Sorry you have to leave now, it must be breaking your heart, you have been so strong through all of this so far, I hope that strengh will carry you forward, remember to walk in the sunshine where you can,
love and Hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | |
#3004 07-13-2004 08:51 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Gita, I am so sorry your sister has to go thru this, you have been strong and a tremendous source of comfort and strength to her I am sure. God Bless both of you...Love, Carol
Phil. 4:13
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---
| | |
| Forums23 Topics18,237 Posts197,109 Members13,296 | | Most Online1,788
Jan 23rd, 2025 | | |
|
