#22737 04-01-2007 02:46 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Anne-Marie 07
Welcome to the group no one wants to "have to be a part of" with the most compassionate people you will ever meet. Colleen said it right ..this is a safe place. You can do this. I am fairly new to all this too and I am a young mom of 5..you can do this and your daughter ..she will be amazing through all this , they surprise you and you will find strength in each other. I know it sounds crazy and my kids were one of my biggest fears......they can do this and so can you .....my motto " One day at a time and some days one moment at a time and all things are possible " In the begging it is all so overwhelming and your mind races and you think the worst and you dont know where to begin or remember things and it just all so much ,,,Take a breathe ..we are all here , really we are. Life will change and it wont be easy , but worth it in the end when you can say you did it and you are cancer free ! I say you cant help the hand you are dealt ....but you can play the cards. So my hugs and thoughts go out to you are your family. Also you need all the support you can get and if you and the ex are friends and he wants to be there.... maybe you should let him, just make it clear that that is what you need support and a friend! Agian you always have us ! I know you can email me anytime..my cancer was of the tongue so I dont know your treatment, but I know your fears.
Sharlee
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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#22738 04-01-2007 03:37 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Ann-Marie 07 - Children can be an amazing source of support. It's good for them to feel that they are a part of being able to help and be a part of your recovery. I would not reject the idea of allowing your ex-husband to be of help to you either. You said yourself that you didn't stop loving him when you divorced and I'm sure he still has feeling for you even though he re-married. When my ex and I divorced, we remained friends and when he remarried, we all got along well. Your ex probably needs to feel he can do something to help you through this (maybe his wife can help, too so she doesn't feel excluded). Don't worry about the "whining". It is NOT whining. You are at a vulnerable point and it's ok to have some compassion for yourself! So accept whatever help is offered. It will help you get past the difficult days so that you can be stronger and able to fight the cancer beast. Stay in touch with us and let us know your feelings and what's happening.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#22739 04-01-2007 04:27 PM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2007 Posts: 168 | Hi again Anne Marie 2007. 4.5 years ago I had to make a life change and at that time I felt like I was totally alone as well. That was all of my making though. That was my first experience with asking others for help. I had always been to proud to ask. Plus I figured it was a sign of weakness. They told me about this concept that I must surrender to win. With alot of effort, prayer and humility I became teachable. This concept of surrendering, allowing others, and for me a God, to help me my life and perception of life changed. I set out on a journey that I never expected. My life turned around and I wasn't alone anymore. I found that what made me feel alone was me. I learned how to be content with my own company. What I want to share with you is this, for 15 years due to loneliness I wasted alot of time in addiction. In July of 2002 that all changed. In March of 2005 I was diagnosed with MS. My wife was pregnant and I got scared, but I never felt alone. In December of 2006 I recieved my diagnosis of cancer. And I really never felt alone because the last 4.5 years taught me to accept others offers for help. I quit putting unrealistic expectations on myself and I also quit denying my family and friends the right to share there gifts of hope and action. Through all of this I have not had to return to any old coping skills and I have been extremely grateful for the number of family friends and strangers that have and continue to help me and my family. I asked them what the difference between the old days and now is and the said I didn't isolate myself anymore and that made it possible for them to do what they always wanted to do and that is share with me the way family does. As long as I'm a parent I am responsible for fighting for my life because I never want my little boy too feel like I ever felt like he alone wasn't enough to go through hell and back for. This is what keeps me humble and gives me the strength to persavere. Prayer has given me all I have needed and it has been humbling as well to know how many people took the time to pray for me and my family. That is why I said before that I could never say it sucks to be me because these challenges I have had to face allowed me to become a part of life. I thank my friends here on this forum and we will be here for you. This is tough but you can do this. And I'm sorry but I know you are not alone and if you have been blessed to be a parent for 5 years now and you are adopting this child it can't suck to be you. We'll do our best to help you navigate this difficult path but you have to put one foot in front of the other. You are not alone. Lee
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you. Lee
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#22740 04-02-2007 12:22 PM | Joined: Mar 2007 Posts: 52 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2007 Posts: 52 | I have to thank you all in groups because I am limited on time. Some days I have more time. What I did the other day was sign in and stay logged in, but wasn't at my puter all the time, so forgive me if I don't get back to you right away.
As far as the cancer goes...I started having a sore throat about a year and a half ago on the right side. after a while it felt like a shooting pain right through my right ear everytime I swollowed.A few months back I got tired of the pain in my throat and ear. I finqally went to my doctor and told her it hurt and when I drank orange juice it burned. She set me up with a specialist and he too the biopsy. The rest I already explained. So that's my story.
I got a call this morning to go for my P.E.T. Scan thurdays @ 1PM. I spoke to my ex(Bob) and his wife (Wendy) and they are both ok with it. I sent them this site for support.
I'm still scared, but seem to be settling down about it. Looks like this may be a roller coaster ride.
Not sure who gave me the site for the letters, but thank you. It did help to understand and not wonder.
I also called my doctor and asked her if there was another med I could take along with the Chantix to help me stop smoking. I'm 18 days in and still smoking. She called in Nicaderm, so I'll be starting the patch tonight. Hope this works. Been smoking sence I was 9 and i'm now 52.
Age 55, Right side throat with ear pain. Squamous cell carcinoma of the supraglottis with cervical neck metastasis. Stage IV disease with a T3, N2, MX
March 2008, diagnosed with Non-Hodgkins Folicular Lymphoma
Now taking Thyroid pills for side effects of Rad Treatments
And Life Goes On...
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#22741 04-02-2007 03:04 PM | Joined: Feb 2007 Posts: 168 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2007 Posts: 168 | Hi again. I got my diagnosis on 12-29-06 and smoked up till the 10th of Jan. I took the Chantix as well. My wife kept giving me a hard way to go. Little comments like "Well, I quit when I got pregnant." She remained smoke free but asked me for a smoke a million times. Anyway I ws really struggling with it, and the Chantix didn't seem to be helping at all. On January 12th I came home, went to my garage, pulled out my smokes and my diet cokes and intended on smoking 2 cigarettes and saying goodbye to my old friend. I smoked the first one and honestly knew then I was done. It was my chioce not the cancer's, my wifes, or the government's choice. Mine. I talked to the remaining smokes left in the pack like they were alive. I thanked them for all the good times in the past . Especially the mornings that we would go out and watch the sun rise and get my head on straight for the day as well as the many times they helped me relax after someone or something really aggrivated me. I told my smokes that although I did not believe that they caused my cancer, I had to recognize at this point that they would probably do quite a bit of harm. I didn't want to be that slefish to my little boy so That was the last time I smoked.
I used snuff as well. I have had no desire to do either since that day. At first I figured I would stop once the treatment started anyway because of all the side effects. The surgeries prior to me quitting slowed me down some but still did not make me quit.It's really tough but you can do. I think what helped me the most was making it my choice. I told all of my doc to stop giving me the smoking speech until they could explain how non-smokers were getting oral and lung cancers. That took some stress out of my dr.s visits as well. That helped to, removing all the stress that I could. Good luck with the patches and the Chantix. THey told me it may take the full 3 months for the Chantix to work. Like I said I never noticed it doing what they said it should do so I finished up the first months supply just in case, and didn't by anymore.
Hang in there. Remember, don't put to much on yourself. Take it one day at a time and do your very best each day. I really believe you will be suprised at the progress you make with everything. I believe in you and admire your courage. :-) Lee
Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you. Lee
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#22742 04-02-2007 08:12 PM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Hi Ann Marie 2007- It sure is a roller-coaster ride, but the good thing about it is that when it's down, you know it's bound to go up as well and you just have to hold on thru the bumps. I've been so interested in the recent posts with the quit smoking ideas. I have an older son whose been smoking since he was 14 and worry about him a lot. I came across a link with some good tips about quitting but the part that got to me was advice to non-smokers (me) about how not to nag the person and make it worse. They suggest that if you bring up the subject more than 3 times a year, then it's "nagging". It's here in case anyone wants to check it out: http://www.anti-smoking.org/quitting.htm I've been reading everything I could on this site re quitting so I can be reading for my "non-nagging" conversation with my smoker son.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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#22743 04-02-2007 11:02 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Sorry I didn't get back to you sooner, but I was away yesterday.
You could go to NYC as suggested above or to Fox Chase in Phila., where I went.
Any Comprehensive Cancer Center (CCC) would be a good idea.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#22744 04-03-2007 06:11 AM | Joined: Mar 2007 Posts: 52 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2007 Posts: 52 | Should I get a second opinion? 2 people have already suggested it.
Why can't they just operate on it and take it out?
Why does there have to be chemo and radiation involved?
The lymph nodes didn't start swelling til the 2 CT scans were done with the dye injection. Now the PET scan thursday will shoot more dye into my veins and they'll get bigger.
For some odd reason, yesterday the pain in my ear went away when I swallow. However, I feel pressure in the back of my throat now. Should I see a doctor or wait til thursday when I go for the PET Scan?
Age 55, Right side throat with ear pain. Squamous cell carcinoma of the supraglottis with cervical neck metastasis. Stage IV disease with a T3, N2, MX
March 2008, diagnosed with Non-Hodgkins Folicular Lymphoma
Now taking Thyroid pills for side effects of Rad Treatments
And Life Goes On...
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#22745 04-03-2007 08:24 AM | Joined: Mar 2007 Posts: 52 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2007 Posts: 52 | I just got a call from Danville. They changed the PET scan to Monday so that I can also see the doctor at the same time.
Age 55, Right side throat with ear pain. Squamous cell carcinoma of the supraglottis with cervical neck metastasis. Stage IV disease with a T3, N2, MX
March 2008, diagnosed with Non-Hodgkins Folicular Lymphoma
Now taking Thyroid pills for side effects of Rad Treatments
And Life Goes On...
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#22746 04-03-2007 10:39 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | AM 007,
Some operate to remove the nodes first and some do the concurrent chemorad first but the current Tx modality says that rad is the real killer of the cancer and chemo helps the rad do it's killing job better. This disease is very agressive and all docs prefer to hit you with the kitchen sink up front than hold anything back. If you have been told your a Stage IV and remember there is no worse Stage you need to listen to their Tx approach. I'm sure if you get a 2nd or 3rd or 4th opinion it won't be surgery only. It may be chemorad first and lets see but forget the surgery only idea. Your life is at stake so don't mess around too long. Get another opinion quick to make yourself more comfortable and get started killing the disease that's killing you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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