#5374 05-08-2005 10:20 AM | Joined: Dec 2004 Posts: 18 Member | OP  Member
Joined: Dec 2004 Posts: 18 | Ime sorry that I havent really been in touch with things for quite a while, My husband and I and my children came over to the Uk to visit his parents, he was recieving palliative treatment at that time, he got sicker and was reviewed by the doctors here who have now done a complete glossectomy,(taken away his whole toungue) and full neck dissection and removed his hyoid bone and his inner jaw and some of the bone and the floor of his mouth and suspended his larynx, he had this operation five days ago and is doing okay but i dont know how i feel as I feel in sort of shock, and also upset that they found more lymph node involvement and I feel for my husband so much that I dont want to see him as i cant stop crying and i so want to keep his spirits up,but dont think I can.
charm
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#5375 05-08-2005 11:26 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Charm,
What your feeling is not something we all haven't felt at one time or another. You may want to see your doctor and get some anti-depressants. Being a primary caregiver is one hard job. Get as much rest as you can, ask for some help, Is there a relative avaiable to help out? Keep coming here and post your concerns and questions, someone with similer treatment will respond. I and many members of this forum are pulling for you both.
It is a long hard road to recovery and I hope it goes well for both of you.
You can do this Charm!! We always find out what were made out of in times of stress.
Best Wishes, 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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#5376 05-08-2005 11:38 AM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Charm
I am so sorry to read your news, you and your family have had such a difficult journey. With you by his side, your husband will feel stronger even though you are clearly distressed. Share your feelings with him, he will appreciate your tears of love.
We are here for you and you are in my thoughts
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#5377 05-09-2005 01:58 AM | Joined: Jan 2005 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 108 | Hi Charm; This is a tough one for sure and your distress is understandable. I cried several buckets before I saw the doc and asked for something to help me keep my composure. I agree with Danny, something mild to help get you over the rough spots is good use of modern meds available. You will need all your strength to continue in that precious role of caregiver and helpmate to your husband.
I wish there was some sort of medal that could be given to the SCC patients' partners. You are invaluable folks.
I hope we can offer you some real support here- keep posting.
All the best,
Fran
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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#5378 05-09-2005 08:22 AM | Joined: Oct 2003 Posts: 89 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 89 | I agree with Helen, visit him, that is what is important, and its is ok if he sees you are sadden too.
I think the bond between my husband and I was strengthened when we shared that we were both scared or worried.
You are doing a lot by being there for him - you don't always need to be strong.
Try to rest up while he is in the hospital. Wishing him the best of recovery, and glad you found the OCF family.
michelle
by the way, where in NZ are you from? Post surgery & rad we traveled to S & N islands - what a beautiful and varied country it is!
History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
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#5379 05-25-2005 07:25 AM | Joined: Dec 2004 Posts: 18 Member | | OP Member
Joined: Dec 2004 Posts: 18 | Thanks guys for all your positive support, I did go and see my doctor and am taking some antidepressants and have recieved some help to see me through, you are all so brave and amazing and everytime I come to this site I leave feeling a lot stronger, I feel for you all and know that you are all going through a lot too.
An update on my husband, he is still in hospital and is recovering well considering his extensive operation, He tells me that he thinks the operation was worthwhile as it has relieved so much of his head pain, which is so good as he seems a lot less distressed.
take care everyone
think of you all
Love charm
charm
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#5380 05-25-2005 12:18 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 | Dear Charm,
I am glad that the surgery has relieved the pain your husband was experiencing and hope for a speedy recovery. Do take care of yourself as he needs you to be healthy too. Sending all the good healing vibes I can find. Tell him we are all here for him and pulling for the both of you.
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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#5381 05-25-2005 02:24 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 | My thoughts and prayers are for you and your children as well as your husband. Just do the best you can. 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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#5382 05-25-2005 06:19 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Charm
You are really doing well even if you aren't confident about that... You too are brave and amazing. Most likely way more than you know. Please come here and ask anything, it is almost always something someone can respond to. Peace Denise
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04
Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
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