#34122 05-01-2005 05:07 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I haven't been posting very often and I'm not sure why. Since the walk ended it's almost like I feel as if treatment ended again, is that bizarre or what?? I just feel very depressed. Brian wanted the stuff yesterday and I dragged my feet on it because I just wanted to avoid anything that smacked of cancer. I thought maybe it was that I was tired, it's been a crazy couple of months with lot's of pressure from family life. But I sleep more now then I ever did before I had cancer yet I never feel rested. I feel like I'm NEVER relaxed or fully satisfied if that makes any sense. I don't know how to explain it. Has anyone else had any of these feelings that I can't seem to put words to?
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#34123 05-01-2005 09:52 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Minnie, that sounds like signs of depression to me. Maybe even PTSD. Especially sleeping a lot. Have you seen told a doctor about it?
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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#34124 05-02-2005 01:06 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Minnie
Read my posts, re: late onset depression, I think thats where we both are at the moment, maybe now spring is here we will both start to feel better.
See your doc, I'll see mine when I get back home..
Sunshine... 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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#34125 05-02-2005 04:09 AM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | I think most of us have experienced the same thing one way or another. I know I have & do. This will pass with a little work, just like so many other things we've had to go through. Take action. Take care, Erik
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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#34126 05-02-2005 04:43 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Minnie-
I just finished the book "Dancing in Limbo" listed on the OCF resource page. VERY GOOD BOOK!! I would highly recommend it to everyone who has heard the "C" word in their family. Most cancer patients suffer a two year grief period after treatment ends.It is over for their families but the grief process is just starting for the survivor. This book puts it into perspective and after reading it I can honestly say I'm dancing again!! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#34127 05-02-2005 05:18 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, yes, I slept most of the weekend and haven't figured out why yet. I have been feeling down lately,too, need something to boost me up. You are not alone in your feelings. Trust me.
Kris, thanks for mentioning the book, I am going to check it out. Love to both of you, Carol
p.s. Minnie, if you want to meet halfway, maybe we could get together for some fun! SMILE!!!!!
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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#34128 05-02-2005 03:16 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Minnie,
I'm sorry to read that you are going through this. My mom seems to be going through something similar. I wish I had an answer to this frustrating situation. I wish you all the best, I know this is not easy for you. Hang in there, it will get better.
Dave
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#34129 05-05-2005 11:21 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 Minnie
So sorry that you are feeling low at present. I guess the huge amount of work you put into the Walk took it out of you both physically and emotionally.
Those symptoms are similar to my hypothyroidic ones. Have you had your thyroid levels checked recently?
Hope your doc can help, and many here love and support you, so please continue to let us know how you are feeling.
Lots of love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#34130 05-06-2005 03:16 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Thanks for all the replies. I am having my thyroid checked on Monday as my doctor thinks that may be causing some of the issues.
We buried Mrs. Jeanne Carleson on Wednesday, wife to Gary, mother to Joel, Sally, Anna and Jared, all still in high school. She died after a 5 year battle with ovarian cancer. When diagnosed they gave her less then a year to live and no hope. She told her doctor that maybe he didn't have hope but that she did, and went on to live five more years. She died of the same disease that took her own mother when she herself was 17, how sad that she had to see her own daughters deal with the same type of pain. It makes me feel selfish that I'm in such a slump.
Thanks for the encouragement.
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#34131 05-06-2005 03:21 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hi Minnie, my prayers are with you and the Carleson family. Take Care, 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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#34132 05-08-2005 04:17 PM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Minnie
Hope things pick up for you. I have an under active thyroid and before I was diagnosed felt exhausted depressed irritable and freezing cold all time. I was not fun to be around. Bob actually thought I was losing it. Now a daily dose of synthroid and I am back to "normal" at least as normal as I can be. I think I read here that radiation can affect your thyroid. If this is whats wrong it's a pretty easy fix and you'll feel much better. Wishing you sunnier days 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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#34133 05-09-2005 04:21 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Thank you everyone.
Denise, I do take medication for my thyroid but they keep changing the dose of it, trying to get it right. The symptoms you described are so on the nose, especially the cold and irritable descriptions. My families way of dealing with something is to joke, so my children call me BP now (bi-polar)and will tell each other to "be careful, mom might go BP on you". I'm still struggling with being able to laugh about it as it's like a huge roadblock in my life but they are kind of right. My mood swings are horrible and tough for everyone around me to handle. My husband is one of the most opinionated, strong willed men I know yet he has developed the habit of calling one of the kids before going home to get a feel for what mood I'm in.
Carol, I would love to meet halfway sometime, I think it would be awesome. Let me get my moods under control first, my kids feel I'm a threat to society at the moment.
Take care everyone,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#34134 05-10-2005 01:52 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Minnie, let me know where and when, I will be there. I totally understand the mood swings, I go through it too. Trust me you are not alone in this. I will send you a private email. 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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#34135 05-11-2005 03:28 AM | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2004 Posts: 155 | Minnie I am not sure if you seeing an endrocrinologist or your regular Doc for your thyroid but they should be treating this condition with the same urgency concern and aggression as your cancer docs...it is a quality of life issue...there are different meds that can be used some that can be taken twice a day to better control the condition. It may be time to find a better specialist. We all have mood swings etc it is our perrogative as woman  but I know too well those feelings of I can't believe I am saying or doing this and being out of control. It is not neccessary to suffer with something that can be treated especially after everything else you have been through and if it's not your thyroid they should be able tell you that too...sooner than later...I'll ask around and try to send you some info privately. Hugs 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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