#50724 05-21-2004 03:34 AM | Joined: Apr 2004 Posts: 32 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 32 | Hello caretakers and patients...
I wonder how I can be more helpful as a caretaker...John, (known to folks on this site as my 40 yo adorable husband, nonsmker, T2N2, s/p surgery, with trach and G-Tube, s/p taxol x 3, radiation now on 7 of 32 with cisplat and taxol in the last few weeks) is understandably!!!... totally pissed at times...especially with being tired...I know that he is most comfortable with me...he doesn't show or share his anger with anyone else...I listen and listen and hold him (when he's not too achey)...try to keep our 3 year old busy and as quiet as possible...but, not sure if there is anything else I can do...
any advice would be great...thank you all,
Sara
Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
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#50725 05-21-2004 06:01 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | I am pissed too! I guess I don't know what else to feel. Tired of being sick, tired, vomiting, gagging, in pain, the weight loss! Sounds like youv'e heard it all from your husband. Tell him I said to get on the bulletin board & scream & yell at us, cry all he wants to, we can take it!! I know my wife feels helpless also, but damnit if she doesn't give up. You & her are stronger than I am for sure. You just be there for him, but keep your chin up & be strong. He will get through this & so will you.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#50726 05-21-2004 07:07 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 | Sara, Erik is spot on. If you don't get angry through this thing, you aren't human. That is strictly from a man's perspective. My wife, GOD BLESS HER, is the true warrior. I was just along for the ride. I was so rough on her at times that I can't believe she didn't just haul off and punch me. Actually, she may have and the meds kept me from remembering  . God put woman on this earth to bear the pain of childbirth, walk by our side through everything...and push us when we can't keep up with them! 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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#50727 05-21-2004 07:11 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 | Sara,
It sounds like you are already doing a great job! I was very pissed too at times and took some of it out on my loving wife. They were difficult times in our marriage.
He has a ways to go and it will only get worse. I would recommend a support group for you to better understand the changes that he is going to go through and to obtain better coping skills for yourself. We are always here to help also.
The treatment will really beat you both up. Just take it one day at a time.
Working on acceptance and possibly a spiritual reason or solution for all of this is the best I can come up with.
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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#50728 05-21-2004 07:20 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | Sara,
I agree with Erik. Get John on this website. We have all been where he is. Don't take is anger personally, just be honored that he shares his deepest feelings with you. You are truly a patient and caring wife and mother. I have a 4 and 2 year old and sometimes it's really hard having the kids around when you're so tired. You have to be "on" all the time. Sometimes my husband would take them to McDonalds to eat and play for an hour so I could decompress so to speak. Hang in there! You caretakers are wonderful people. Even though it's hard for you to see your loved one suffer, we couldn't possibly get to the other side of recovery without you.
God Bless you and John!!!
We're 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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#50729 05-21-2004 07:28 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Sara
Well as a carer and a patient I would say you are doing a great job.. the first job of a carer is to understand that you are always wrong.. the second job is to learn to swing from ceilings and climb walls.. it looks better from up there..
you are doing ok lady..
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
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#50730 05-21-2004 07:45 AM | Joined: Apr 2004 Posts: 32 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 32 | Hello all,
You are so wonderful...I cried (so nice to share and hear the guy perspective)...and I belly laughed (come to think of it , i am always wrong and yes, I'm am learning to climb walls) and thanks for the suggestions...
Lol,
Sara
Wife of John, 40yo, SCC R Tonsil (3/10/04), s/p resection and rad neck, forarm falp, taxolx3 pre rad, rad (30 txmnts) & taxol/carbo. Now he is 49 and doing well!!!
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#50731 05-21-2004 07:47 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | sbk: Hang in there kiddo. This is difficult treatment he is going through and we all give our saintly caregivers a bad time. Because the treatments get to be too much sometimes. However, my wife, who takes such good care of me, has had to straighten me out a couple of times to get my attitude in place. A quiet discussion on the patio with her talking and me listening usually did it. Of couse, I am used to obeying after 25 years, but her points of the effects I was having on the kids and the house in general rang very true once she pointed them out to me. By all means, though, have your hubby look at this site. It can give him some ideas on how to cope as well as whats coming. Perhaps he can deal with it better if he knows whats ahead. Be careful with that, though, because I didn't want to know anything until my treatments (rad/chemo) were over. Surgery didn't matter because I already knew what to expect after that having had them before. So hang in there and help him to understand the frustration which causes the anger.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#50732 05-21-2004 09:59 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 | Sara, If you would like to bounce thoughts off someone that has been through what you are going through (and getting ready to go through) feel free to email my wife, Susan ( [email protected]). She will tell you plenty of tense moments that I even laugh at now (even if I don't think they are funny and still take them personally!). I don't remember some so I just bob my head and go along with it, not believing I could have even possibly been like that!  God bless you and fasten your seatbelt...it will get a bit tougher before it gets better. 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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#50733 05-21-2004 10:27 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Ed you are one in a million..
my husband would no more admit he was wrong than fly to the moon.. 2 gold stars for that... now I am the patient as well as the carer it is real fun at our house..
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
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