Hello. This my first time posting but have been reading other postings on this site looking for people in the same boat as my husband and myself. It is reassuring to be able to identify with the problems others have faced and see how they have coped. My husband was diagnosed with Stage 4, SCC of gingiva and left mandible, 2 nodes positive with 1 node broken through. Surgery Dec. 06 with left mandibulectomy and bone graft from iliac crest, left neck dissection. Radiation x30 concurrently with 3 rounds of high dose Cisplatin. Treatment completed Mar. 14/07. Surgery was well tolerated with quick recovery, chemo & radiation totally wiped out his positive attitude and energy. PEG tube was inserted 3 weeks into his treatment, could have been done earlier but he refused it, trying to make it through on his own. Our biggest problems have been his inability to eat more than liquids (he refuses to eat pureed food)and depression.Depression is being treated with some improvement. He so fears that he will never eat real food again and if he can't eat sees no quality to his life or reason to continue. His recovery has been further complicated by recurrent infections of the mandibular plate securing the bone graft. Tomorrow he will have surgery to remove the plate and scar tissue and reconstruction of left side of his neck.
I am a retired oncology nurse and I have no difficulty dealing with his physical care, dressings, tube feedings, medications etc. but I do have difficulty with the continued depression and hopeless attitude. He sometimes accuses me of not having any sympathy for him and at times I suppose that is true. I have seen patients overcome health challenges so much worse than his. I might add that all his checkups and CT scans have been negative for recurrence at this point. I guess I would like to say to Valerie be thankful for "superman's" attitude and hope he can hang on to it through treatment, just be there for him in case he finds out he isn't "superman".
Thanks for the letting me vent.
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Posts: 1 | From: London, Ont. | Registered: Oct 2007 | IP: Logged
emmylou1951
"Above & Beyond" Member (200+ posts)
Member # 4422
posted 17 October, 2007 02:53 AM
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Hi, Wife! Welcome to OCF! Looks like your hubby and mine have had similiar diagnoses...how old in your man?
Know that our thoughts will be with you as you go through hell again with this surgery..
Feel free to post and VENT until your heart's content! We caregivers deserve Academy Awards, or at least a Nobel...
My 'superman' refuses pureed food, as well..thank God for the PEG!
Lois & Buzz in NC
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CG to 76 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection PEG 08/27
T2 N2-B M0 Stage IV-A
33 IMRT -09/04 +6 Paclitaxel/Carboplatin 1st: 09/07
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Posts: 227 | From: Central North Carolina, USA | Registered: Jun 2007 | IP: Logged
JAM
Patient Advocate (300+ posts)
Member # 1983
posted 17 October, 2007 02:57 AM
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To Wally's wife: I hope your post does not get lost here. I would move it if I knew how.
First, I think your being an Oncology nurse is a "mixed blessing". Knowing how to deal with the physical aspects of this disease is a very good thing[ that scares most of us sh*tless]. Dealing with the emotional aspects that have attacked your husband is a far different matter and very personal.If yor hubby has always been a strong, healthy man,a family provider, the caregiver to the family, what is this doing to him emotionally?
Each of us reacts to the word "cancer" in a totally different way and each of us gives up our independence in a different way.It sounds to me that you have given your all to the caregiver role but he has not yet been able to recover from the shocks to his physicial and emotional stress. What do you think might be the next good avenue to explore? Amy in the Ozarks
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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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Posts: 2475 | From: Arkansas | Registered: Apr 2005 | IP: Logged
helen.c
Patient Advocate (300+ posts)
Member # 930
posted 17 October, 2007 11:03 PM
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I don't know how to move this either.
But you need to be a wife first and foremost, stop telling the people who should be Wally's carers what you know. Let others do the nursing and you do the loving wife.
Although this post is in danger of getting lost please stay with us, we are not a bad crowd.
Sunshine.. love and hugs
Helen
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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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Posts: 1051 | From: Leicester . U.K. | Registered: Sep 2003 | IP: Logged
