#2476 05-10-2004 06:13 AM | Joined: Oct 2003 Posts: 52 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 52 | I don't think I am ever going to move on....I sit here reading these posts and I can't get over the fact that Marcy's doctors didn't give her radiation after her surgery as she had a positive lymph node and she was only 32..Maybe she would still be alive. I want to do this over so bad!! I want to try again. It is so hard to let this go. I ache to see Marcy so bad, life is never going to be happy again..
Help me.
Michelle
Michelle, sister to Marcy
Dx January 03, partial glossectomy/selective neck dissection T2N1MO/recurrence June 03, radiation and chemo/recurrence Dec. 03 mets to spine and base of skull//palliative care//lost her April 10th 2004 Age of 32
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#2477 05-10-2004 06:33 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Dearest Michelle, my heart aches for you. I wish I had magic words to take your pain away and bring your beloved Marcy back. Life will get better tho, it will. Don't give up, please, just start praying...God will help you thru this, He truly will. I wish I lived near you, maybe somehow I could help more. 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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#2478 05-10-2004 07:35 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Dear Michelle,
I can't begin to even imagine the pain you must be going through. Time seems to help, but then time seems to go so slowly when you're down.
I know you want a "do over", but that might not have helped either and you'll really drive yourself up the wall thinking about that. I don't want to see you become bitter and angry. You are too dear and kind for that.
You can't know what would have happened if you'd gone another treatment route. As you may remember, I had the radiation and chemo and it didn't help. I had no positive nodes. So you just can't know what would have happened.
Rely on God's strength to get you through. It's okay if you're mad at Him. Tell Him so. Remember Marcy is in a much better place now.
Remember we are always here for you.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#2479 05-10-2004 07:45 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Oh Michelle
What you are going through is a normal part of the grieving process.. I know you don't believe me now.. but in time you will see that.. what if.. what only.. we have all at sometime or other stood and SCREAMED these words.. at God at the Docs.. at our friends.. SCREAM LOUD you have earned that right.. we are here.. and we ARE hearing your pain.. If we could we would carry some of it for you... No one could have ever asked for a better sister than you.. the love you shared is felt by us all..
prayers love and gentle 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
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#2480 05-10-2004 10:51 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dear Michelle,
Please know that I do pray for you everyday...I know that might not mean much at this time, but God can give you some peace if not now but down the road. I, too, get mad and wonder...Dan was not advised for radiation either, and by 3 more months he ended having a very aggressive tumor in his neck...had I been on this board earlier, we would have known to question that. They could not get all the tumor with radical neck dissection (in carotid and jugular), so just sewed him back up and finally at that point ended up in a good comprehensive HNC university. Again, had we known all we know from reseach especially on this site, we would have chosen a university as opposed to a local county hospital and oral surgeon there. Some days I can hardly stand the fact that we missed so much, but I try strongly believe God has a plan for us all, and had we done all that it might not have changed a thing, just gotton to the cancer sooner. Isn't it something that we learned a bit late...but maybe it was for the reason to help someone else who may beginning this battle. I would love to think we could at least do that!
Take care, sweetie, and know that you are truly loved and cared for on this board!
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#2481 05-10-2004 11:09 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Dear Michelle, I understand how you`re hurting, after over two months, i wake up and think Frank is still sleeping beside me. And I do the what if, if only, but we can`t change it. Strange things still bother me, I can go through his clothes and two years of notes, but can`t pack my kitchen stuff for my move because it reminds me of cooking for him. Evenings are the worst, I just hold onto his teddy bear and cry. Do whatever you need to do to help yourself now......I keep reminding myself that Frank left me here to continue the fight, and I remind myself how strong he was, and now he needs me to keep up the fight...........Much Love and Prayers....Dee | | |
#2482 05-10-2004 01:04 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Dear Michelle, losing someone you love is much more painful than losing hope on your own life. There is nothing you can do to get Marcy back and trying to regret what has not been done to help may only add further misery to those still alive. I believe there must be a reason for the doctor not to use radiation after surgery. You need to face the reality and there is still meaning in your life. There are more people who need your care and even more who are concerned about you. So pluck up your courage now. We are standing by your side.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#2483 05-10-2004 01:40 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Dear Michelle,
Time will heal all wounds. Try and remember the good times you and Marcy had. Take comfort in knowing you did all you could. You were a caring and loving sister and caregiver. It showed in your post's. Remember, You can come here and vent anytime,
Your Friend, Dan
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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#2484 05-11-2004 01:55 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 | Michelle,
I can not put into words anything that will soothe your aching heart. I pray for you daily and I know God will comfort you if you ask Him. It is okay to feel anger and hurt right now because of the love you had for Marcy. She was so fortunate to have had you and I am sure you did all you could for her. I pray that every day your pain will be a bit more tolerable and your memories will turn to the joy you experienced in this life with Marcy.
There will be tough times for you and for all of us who have lost a loved one. Replacing the pain with the loving thoughts takes time. God bless you.
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
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#2485 05-11-2004 05:09 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | Michelle,
My heart goes out to you. Your feelings are understandable and part of your grieving process. Please understand that by playing "what if" you're only torturing yourself and I'm sure that Marcy would not want you to do that. Please remember to take care of yourself as I am sure this is something that Marcy would want you to do.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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