#51346 12-06-2005 03:46 PM | Joined: Aug 2005 Posts: 22 Member | OP  Member
Joined: Aug 2005 Posts: 22 | I find myself writing this and feeling very ashamed as I read some of the posts. I have been feeling so down lately-feeling so sorry for myself! When Lee initially had the very poor prognosis, I only prayed that he could be here to watch our son grow up. Now that he is doing better, I find myself so sad for all the things he is now missing-speech and swallowing. Thanksgiving was so hard and sad, and Christmas doesn't seem the same at all. I miss our old life together so much-everything is so different and always will be. But after reading Tonya's post, I realize that we are fortunate to have Lee here and I am grateful that I have this forum. I guess I was originally writing to whine a little, and now I feel blessed. Thank You and forgive my selfishness.
Doreen
Stage IV scc base of tongue/larynx
Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
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#51347 12-06-2005 04:06 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 | Doreen,You need a lot of hugs- this is a very tough life issue to deal with and it takes a hugh amount of strenght and fortitude. Maybe this will help-I want you to think about our families who are dealing with family members overseas[in Iraq, Afganstan and elsewhere]who are also praying every day that there is no bad news. I truly believe that life demands the strongest attitude to go forward from all of us- no guarentees it will be all roses! You are not being selfish- just human- Picture us holding your hand and supporting you as best we can. Take care of yourself and try to rejoice in present victories more that past memories. 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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#51348 12-06-2005 06:57 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Doreen, I don't think you should feel ashamed. Even while you were not the patient, you too have suffered loss. It takes a while to get back to normal even for the caregiver/significant other. I won't say you need therapy but talking this out with a trusted friend might help.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#51349 12-07-2005 06:16 AM | Joined: Jul 2005 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2005 Posts: 54 | Doreen,
What a beautiful, honest and sincere post. I share many of your feelings and am learning day by day how to be happy and sad at the same time -happy for each day and sad for each loss. I hope you let yourself feel both and if you need a little help to get through the holidays please mention your feelings to your doctor. I have made an apt. - I'm not Tom Cruise (antiMedman) - I may need meds to get through the holidays! Best to you and your family,
Janet
Caregiver, Husband diagnosed 7/6/05 SCC left tonsil, T2N2bM0, Concurrent chemo/radiation begun 8/2/05 (Cisplatin). Received 2 cycles cisplatin, 38 radiation treatments. Completed course 9/27/05.
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#51350 12-07-2005 08:16 AM | Joined: Sep 2005 Posts: 325 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2005 Posts: 325 | Doreen,
I am sure no one wants you to feel ashamed! What you are going through, I have gone through, and would bet my britches everyone on this board has gone through. It is a natural grieving process for the loss of your life as you knew it!
You are so right about the blessings, and you are astute enough to recognize them. Good for you!
Best wishes for your now and future life, and I am sure you will find that not ALL the changes are negative ones!
Andrea
SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
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#51351 12-07-2005 09:15 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Doreen
Our fellow Board members have said it all.
We have all had to go through the grieving process in one way or another.
What a smart lady you are to recognize and accept your feelings.
Maybe you should pop over to the "Friends" section of the forum and join us on "The Island". We bitch and moan there to our hearts content, with total understanding from our friends.
And a person just cannot have too many friends now can they?
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#51352 12-07-2005 04:33 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 | Doreen, I second Marica's invite- join us on our "magic island", where you can say or do whatever makes you feel better. Lots of hugs and supposrt here. 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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#51353 12-07-2005 04:42 PM | Joined: Aug 2005 Posts: 22 Member | | OP Member
Joined: Aug 2005 Posts: 22 | Thank you all so much. I tend to "stay away" when I'm down and last nite I did not and I'm so glad. It felt really good to get that out and I appreciate all the support. Sometimes I feel like if I share or think too much it beccomes so raw and makes me face all that I fear. Thanks again everyone.
Stage IV scc base of tongue/larynx
Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
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#51354 12-09-2005 08:32 AM | Joined: Sep 2004 Posts: 153 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2004 Posts: 153 | Lee,
My note was not meant to make you feel down, but please, do enjoy the little things like being able to hold your husband's hand. That's what I miss the most. It is a great gift that your husband is doing well, thought I completely understand the stress and hardship of this disease. It is also a wonderful gift that he can watch your son play and still be in your lives each day. No, it will never be the same, but it can still be good. Different isn't bad, it just takes some time to get use to. So, smile, know we are here to support you and please don't hesitate to ask for anything you need.
Tonya
Sister of 32 year-old oral cancer victim. Our battle is over but the war rages on. My brother passed July 26, 2005. He was a smokeless tobacco user.
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