Fear/Discouragement

Vivi C

How did you all cope with fear? Here it is 4 AM and I can't sleep. I am just starting this journey and I wonder if I will have the strength to make it. I will be having G-tube surgery tomorrow and starting chemo and radiation on Monday.

ratface

Just like you are
Hi Vivi C

I handled it not with fear but more accurately described as terror. Being told you have cancer is a a life changing event of proportions I have yet to surpass with any other experience. You will progress through stages and are in your initial fear/ unknown/ anxious/ terrified all combined state of mind. These are actually the easier days comming up so at least take them in stride as you can. You really can slow down a little and start planning/researching asking questions or just reading all the past posts on your upcomming procedures. But to answer your question directly I needed, asked for, and received anti anxiety medication which I'm still taking one year later. It makes a world of difference putting that gloom and doom somewhere farther back in the brain awareness of it all.

The G-tube is just something new to cary around for the next year or so, kind of like a new best friend. You will get quite comfortable with it, tolerate it, and be glad when it's gone.

I don't know your cancer specifics but I'm a year post and feel better today than when I was first diagnosed physically- I eat better, exercise regularly and just have a much better appreciation for life. Guess what, I'm still scared but I'm here to tell you that "terrified" does pass at some point. My best on your journey, you won't be alone, lean on us a lot!

Rick

Scambuster

Step by Step
Hi Vivi,
Sorry you are going through this but just know we all got through and made it out the other side of the treatment. I would suggest you buy a nice note book and record your feelings as well as your journey in diary form and jot down what is going on day to day. This will help you keep track of things and remember what happened when and what meds etc you were given/took. Also note down important bits of information and questions you want to ask your various doctors.

You will soon get into the routine so take it easy and let the process carry you till you find your balance. Take each step as it comes and when it comes, day by day. There are few good posts further back about 'surviving the mask' - how to relax etc. Ask your doctors, nurses and techies ANYTHING you need - be it guidance or reassurance about your treatment. Don't be afraid to ask as you are new to this, while they deal with the procedures everyday. You will be fine, the fear should subside, if not - talk to your doctor as they can treat your for anxiety if required.

Keep us posted.

Scambuster

Jan Trinks

fear and discouragement
Hi Vivi:

Don't know that I'm the one to help much about fear and discouragement except that I know how you feel and my husband is the one with the cancer. He was diagnosed with head and neck cancer Stage IV in Nov. 2008; it was on his throat across from the base of his tongue but not on tongue. The chemo and radiation were successful. We found out last Thurs. from an endoscopy that he has a bleeding ulcer that showed cancer. I refer to myself as the basketcase wife! We've been married 35 years and have no children. Yesterday he underwent abdominal ct scan and lower lumbar mri as he has had severe back pain. We see the onc. tomorrow morning and should know where we go from here. Yes, I am scared to death. We have a strong faith in God and have many people praying for us. You will now be added to our list. Charlie has a great and positive attitude which helps me. The people on this website are wonderful and have been a real blessing to me. Try to stay positive; pray, pray, pray! Let us know how you're doing. Good luck and God bless on Monday as you start your journey.

Jan and Charlie Trinks

Vivi C

Jan Trinks said:

fear and discouragement
Hi Vivi:

Don't know that I'm the one to help much about fear and discouragement except that I know how you feel and my husband is the one with the cancer. He was diagnosed with head and neck cancer Stage IV in Nov. 2008; it was on his throat across from the base of his tongue but not on tongue. The chemo and radiation were successful. We found out last Thurs. from an endoscopy that he has a bleeding ulcer that showed cancer. I refer to myself as the basketcase wife! We've been married 35 years and have no children. Yesterday he underwent abdominal ct scan and lower lumbar mri as he has had severe back pain. We see the onc. tomorrow morning and should know where we go from here. Yes, I am scared to death. We have a strong faith in God and have many people praying for us. You will now be added to our list. Charlie has a great and positive attitude which helps me. The people on this website are wonderful and have been a real blessing to me. Try to stay positive; pray, pray, pray! Let us know how you're doing. Good luck and God bless on Monday as you start your journey.

Jan and Charlie Trinks

Thank you for your prayers
Thank you for your prayers Jan! I know that prayers are sustaining me. I also ask our Heavenly Father that He will comfort and protect you and Charlie. What a blessing you are!
Vivi

Vivi C

ratface said:

Just like you are
Hi Vivi C

I handled it not with fear but more accurately described as terror. Being told you have cancer is a a life changing event of proportions I have yet to surpass with any other experience. You will progress through stages and are in your initial fear/ unknown/ anxious/ terrified all combined state of mind. These are actually the easier days comming up so at least take them in stride as you can. You really can slow down a little and start planning/researching asking questions or just reading all the past posts on your upcomming procedures. But to answer your question directly I needed, asked for, and received anti anxiety medication which I'm still taking one year later. It makes a world of difference putting that gloom and doom somewhere farther back in the brain awareness of it all.

The G-tube is just something new to cary around for the next year or so, kind of like a new best friend. You will get quite comfortable with it, tolerate it, and be glad when it's gone.

I don't know your cancer specifics but I'm a year post and feel better today than when I was first diagnosed physically- I eat better, exercise regularly and just have a much better appreciation for life. Guess what, I'm still scared but I'm here to tell you that "terrified" does pass at some point. My best on your journey, you won't be alone, lean on us a lot!

Rick

Thank you Rick! What a kind
Thank you Rick! What a kind offer (to lean on you guys). I have SCC at the base of tongue. What about you?
Vivi

Vivi C

Scambuster said:

Step by Step
Hi Vivi,
Sorry you are going through this but just know we all got through and made it out the other side of the treatment. I would suggest you buy a nice note book and record your feelings as well as your journey in diary form and jot down what is going on day to day. This will help you keep track of things and remember what happened when and what meds etc you were given/took. Also note down important bits of information and questions you want to ask your various doctors.

You will soon get into the routine so take it easy and let the process carry you till you find your balance. Take each step as it comes and when it comes, day by day. There are few good posts further back about 'surviving the mask' - how to relax etc. Ask your doctors, nurses and techies ANYTHING you need - be it guidance or reassurance about your treatment. Don't be afraid to ask as you are new to this, while they deal with the procedures everyday. You will be fine, the fear should subside, if not - talk to your doctor as they can treat your for anxiety if required.

Keep us posted.

Scambuster

Thanks for the suggestions
Thanks for the suggestions and your encouragement! You are all so kind!
Vivi

ratface

Vivi C said:

Thank you for your prayers
Thank you for your prayers Jan! I know that prayers are sustaining me. I also ask our Heavenly Father that He will comfort and protect you and Charlie. What a blessing you are!
Vivi

exactly the same diagnosis
SCC BOT stage 3 or 4 with spread to two lymph nodes on the right side. I had the 3-21 day cisplatin regimes, 39 radiation treatments, and a selective neck disection to the right side. That was last July and depending on your location there are already new and improved treatment modalities. Make sure you are at a cancer treatment facility that uses the team approach and if you like the doctors put the drivers's wheel in their hands while being vigilant and asking lots of questions. Don't be afraid to ask for second opinions if not comfortable with doctors. Find someone to go to treatment with you as an extra pair of ears because your own head will be spinning. Eat a lot now. enjoy all those things you thought you shouldn't eat and welcome again.

Vivi C

ratface said:

exactly the same diagnosis
SCC BOT stage 3 or 4 with spread to two lymph nodes on the right side. I had the 3-21 day cisplatin regimes, 39 radiation treatments, and a selective neck disection to the right side. That was last July and depending on your location there are already new and improved treatment modalities. Make sure you are at a cancer treatment facility that uses the team approach and if you like the doctors put the drivers's wheel in their hands while being vigilant and asking lots of questions. Don't be afraid to ask for second opinions if not comfortable with doctors. Find someone to go to treatment with you as an extra pair of ears because your own head will be spinning. Eat a lot now. enjoy all those things you thought you shouldn't eat and welcome again.

Question
What is 3-21 day Cisplatin? I am having 4 rounds of Cisplatin starting on day 1 of radiation which is this coming Monday. Did you lose a lot of weight? Have you been able to return to work? How long after the end of treatment did you have feeding tube removed? Sorry for all the questions. Did you require pain meds during treatment? I am in California. Thanks again!
Vivi

luv4lacrosse

Fear
Hi, I am even newer to this C thing than you. Thank god I found this site. Stay off of google, trust me on this one. I have had myself dead and buried surfing statistics. I have my first Appt. with an ENT Oncologist tomorrow to discuss the initial findings from my FNA of my Lymph Node and my Neck CT.

I have not even been a member of this site for 24 hours yet and feel so much better. I am actually at work today doing work today instead of panicing.

Keep posting here as we are all able to relate personally with you.

Best!!!

Mike

ratface

luv4lacrosse said:

Fear
Hi, I am even newer to this C thing than you. Thank god I found this site. Stay off of google, trust me on this one. I have had myself dead and buried surfing statistics. I have my first Appt. with an ENT Oncologist tomorrow to discuss the initial findings from my FNA of my Lymph Node and my Neck CT.

I have not even been a member of this site for 24 hours yet and feel so much better. I am actually at work today doing work today instead of panicing.

Keep posting here as we are all able to relate personally with you.

Best!!!

Mike

some quick answers
I'm on my way to the dentist.

What is 3-21 day Cisplatin? I am having 4 rounds of Cisplatin starting on day 1 of radiation which is this coming Monday. Did you lose a lot of weight? Have you been able to return to work? How long after the end of treatment did you have feeding tube removed? Sorry for all the questions. Did you require pain meds during treatment? I am in California. Thanks again!
Vivi

I had cisplatin given every 21 days. 3 separate cycles. You are probably having induction chemo which is like an extra dose just to give it a quick kick in the ****. I lost 45 lbs but was overweight to begin with. The cancer diet sucks but ie effective. I returned to work but took an early retirement as I was eligible. Work just didn't hold the allure anymore. had the feeding tube for about a year. You really don't want to go through that procedure twice. I waited till after my neck disection to make sure i was able to eat but it turns out eating was not an issue at that point and I could have gotten it out sooner. I used various pain meds along the way. Pain meds for after surgiries, for throat pain from radiation, and for radiation pain from radiation burns. I was a Walgreens junkie.

Kimba1505

ratface said:

some quick answers
I'm on my way to the dentist.

What is 3-21 day Cisplatin? I am having 4 rounds of Cisplatin starting on day 1 of radiation which is this coming Monday. Did you lose a lot of weight? Have you been able to return to work? How long after the end of treatment did you have feeding tube removed? Sorry for all the questions. Did you require pain meds during treatment? I am in California. Thanks again!
Vivi

I had cisplatin given every 21 days. 3 separate cycles. You are probably having induction chemo which is like an extra dose just to give it a quick kick in the ****. I lost 45 lbs but was overweight to begin with. The cancer diet sucks but ie effective. I returned to work but took an early retirement as I was eligible. Work just didn't hold the allure anymore. had the feeding tube for about a year. You really don't want to go through that procedure twice. I waited till after my neck disection to make sure i was able to eat but it turns out eating was not an issue at that point and I could have gotten it out sooner. I used various pain meds along the way. Pain meds for after surgiries, for throat pain from radiation, and for radiation pain from radiation burns. I was a Walgreens junkie.

Initial reaction.
Vivi,
My partner, Mark, has SCC left tonsil stage IV, HPV16+. He has had extensive surgery, and is 2/3 of the way through his chemo and raidation treatment. He is doing great, by the way, and has not used his PEG tube once. (Great radiologist).
A diagnosis of cancer sucks, whether it is you or someone you love. My intitial reaction upon hearing those words, "it's cancer" was to have all the blood rush out of my head and literally almost hit the floor. It took about 15 minutes for me to recover physically, a couple weeks to recover emotionally. What happens is you begin to accept every day as it comes, and do what you have to do every day, because the days keep coming. I have found it amazing how you do what you need to do to live. Think about the guy who recently cut off his own arm to save his life. Our bodies and our spirits want to live, and so we fight, and move through every day, and "just do it". It is almost like the grieving process of denial (we had that), anger (I had that), saddness (we had that), acceptance (we have that) and then FIGHT (we're doing that). You will too. And you don't have to do it alone. You have a whole world here to get you through. There is a post started by "Skiffin" (John) asking where everyone lives. If you are interested...you will see you have world-wide support. The knowledge here is tremendous. I would not be the caretaker I am to Mark, if not for the knowledge and support I have had here.
Best of Luck to you as you go step by step.
Kim

davidgskinner

Kimba1505 said:

Initial reaction.
Vivi,
My partner, Mark, has SCC left tonsil stage IV, HPV16+. He has had extensive surgery, and is 2/3 of the way through his chemo and raidation treatment. He is doing great, by the way, and has not used his PEG tube once. (Great radiologist).
A diagnosis of cancer sucks, whether it is you or someone you love. My intitial reaction upon hearing those words, "it's cancer" was to have all the blood rush out of my head and literally almost hit the floor. It took about 15 minutes for me to recover physically, a couple weeks to recover emotionally. What happens is you begin to accept every day as it comes, and do what you have to do every day, because the days keep coming. I have found it amazing how you do what you need to do to live. Think about the guy who recently cut off his own arm to save his life. Our bodies and our spirits want to live, and so we fight, and move through every day, and "just do it". It is almost like the grieving process of denial (we had that), anger (I had that), saddness (we had that), acceptance (we have that) and then FIGHT (we're doing that). You will too. And you don't have to do it alone. You have a whole world here to get you through. There is a post started by "Skiffin" (John) asking where everyone lives. If you are interested...you will see you have world-wide support. The knowledge here is tremendous. I would not be the caretaker I am to Mark, if not for the knowledge and support I have had here.
Best of Luck to you as you go step by step.
Kim

Fear and discouragement...
I was really tough through the first several weeks after my diagnosis, right tonsil with the lymph nodes, through the 35 radiations and 3 rounds of cisplatin. Then during the last weeks of treatment all my emotional armor just cracked and fell apart. Kind of weird I guess, that the fear would hit me after the treatment ended and supposedly I was "better."
Anyways, my little bit of advice would be to just let the tears flow when they come. Don't try to hold them. Tears are good for us.
And, don't forget to BREATHE.
I started doing yoga with a cancer survivor teacher (great class here in San Diego) and have been amazed at how often I was actually holding my breath.
Vivi, you will get through this. It is a hard road, and you have the right to complain about it and say that it sucks. But you will get through it to the other side.
david

Vivi C

davidgskinner said:

Fear and discouragement...
I was really tough through the first several weeks after my diagnosis, right tonsil with the lymph nodes, through the 35 radiations and 3 rounds of cisplatin. Then during the last weeks of treatment all my emotional armor just cracked and fell apart. Kind of weird I guess, that the fear would hit me after the treatment ended and supposedly I was "better."
Anyways, my little bit of advice would be to just let the tears flow when they come. Don't try to hold them. Tears are good for us.
And, don't forget to BREATHE.
I started doing yoga with a cancer survivor teacher (great class here in San Diego) and have been amazed at how often I was actually holding my breath.
Vivi, you will get through this. It is a hard road, and you have the right to complain about it and say that it sucks. But you will get through it to the other side.
david

Thank you!
You folks are all amazing and so caring! I thank you from the bottom of my heart for all of your encouragement and I pray for all of you to get through this and come out on the other side much stronger and joyful and enjoy each moment we have here on this earth! Thank you guys! God bless you all.
Vivi

Joel4

Vivi C said:

Thank you!
You folks are all amazing and so caring! I thank you from the bottom of my heart for all of your encouragement and I pray for all of you to get through this and come out on the other side much stronger and joyful and enjoy each moment we have here on this earth! Thank you guys! God bless you all.
Vivi

Conquering Fear
I knew from the moment the Doctor told me that I have cancer that I would not be able to get through this on my own. I knew that according to 2 Timothy Chapter 1 versus 7 that God has not given me a spirit of fear but of love and power and of strong mind.
I began to read through the psalms and knew that God would be with me throughout the whole ordeal. I also knew that Jesus can heal diseases and I had faith that he would.
I had surgery with a plan to begin radiation soon thereafter. My scans prior to surgery showed a whole lot of questionable cell activity, right and left tonsil looked diseased as did several lymph nodes. Post surgery pathology showed all clear except for one lymp node with no spread.
The doctor suggested no radiation or further treatment at this time.
Google up Psalms and healing and just give it a try. Prayer is huge but a relationship with God is key. Think relationship and not religion.
I'm so sorry if I'm coming off heavy handed here but Vivi asked and I felt compelled to give my two cents.

Vivi C

Joel4 said:

Conquering Fear
I knew from the moment the Doctor told me that I have cancer that I would not be able to get through this on my own. I knew that according to 2 Timothy Chapter 1 versus 7 that God has not given me a spirit of fear but of love and power and of strong mind.
I began to read through the psalms and knew that God would be with me throughout the whole ordeal. I also knew that Jesus can heal diseases and I had faith that he would.
I had surgery with a plan to begin radiation soon thereafter. My scans prior to surgery showed a whole lot of questionable cell activity, right and left tonsil looked diseased as did several lymph nodes. Post surgery pathology showed all clear except for one lymp node with no spread.
The doctor suggested no radiation or further treatment at this time.
Google up Psalms and healing and just give it a try. Prayer is huge but a relationship with God is key. Think relationship and not religion.
I'm so sorry if I'm coming off heavy handed here but Vivi asked and I felt compelled to give my two cents.

Thank you!
Not at all Joel! You are preaching to the choir sort of speak. The Psalms have been my lifeline since the moment I heard the diagnosis (come to think of it, the Psalms have been my lifeline for the last 15 years of my life).
I know that God will be with me every step of the way because He never leaves us or forsakes us but He also understands that we are human and even though I surrender all my fears to Him, I pick them back up and start worrying. "Cast all your anxieties on Him because He cares for you" has been my verse since this trial began. Thank you for sharing. God Bless, Vivi
I am thrilled to hear that you are doing well and did not need radiation. Keep in touch.

Pam M

You WILL Have the Strength to Make It
But last night will most likely not be your last sleepless night through this.

On dealing with the fear, you hit on one of my favorite activities - visiting this site. When I've been anxious during treatment, I've often come to check out the discussion boards or chat site here.

Dig in - you've got a job ahead of you. As you've already seen, there are lots of great people here. They will make the road a lot less rough, trust me. And, just like I'd advise you to ask your doctors tons of questions, I'd advise you to do the same here.

Oh - I was diagnosed Stage IV, Base of Tongue with two nodes. Doc told me last week he'd consider me to be in remission.

Do well,

- Pam

Hal61

Stages
Vivi C, when I started on this journey in November of last year (SCC base of tongue, two nodes mets) I spent the first few days with, literally, a coldness in my chest that was my fear showing itself. That went away as I became involved the treatment, and the battle to regain my health. I haven't felt that since and many things like taste and more strength are returning. During chemo and radiation I was in another world, too busy and wierded out to worry about much. You're fortunate to have faith. When I started I had no faith, but have come to believe there is in fact something greater than myself that knows me, and cares for me. Your 4am worry will pass soon, and your recovery effort will challenge and strengthen you. God is with you, we here are with you. Keep posting.

Hal

Vivi C

Pam M said:

You WILL Have the Strength to Make It
But last night will most likely not be your last sleepless night through this.

On dealing with the fear, you hit on one of my favorite activities - visiting this site. When I've been anxious during treatment, I've often come to check out the discussion boards or chat site here.

Dig in - you've got a job ahead of you. As you've already seen, there are lots of great people here. They will make the road a lot less rough, trust me. And, just like I'd advise you to ask your doctors tons of questions, I'd advise you to do the same here.

Oh - I was diagnosed Stage IV, Base of Tongue with two nodes. Doc told me last week he'd consider me to be in remission.

Do well,

- Pam

So happy for you Pam!
Awesome (about the remission)!!!! So happy for you. How do they know? What kind of testing did they do and how long after the end of radiation? Thanks for your encouragement Pam!
Vivi

Vivi C

Hal61 said:

Stages
Vivi C, when I started on this journey in November of last year (SCC base of tongue, two nodes mets) I spent the first few days with, literally, a coldness in my chest that was my fear showing itself. That went away as I became involved the treatment, and the battle to regain my health. I haven't felt that since and many things like taste and more strength are returning. During chemo and radiation I was in another world, too busy and wierded out to worry about much. You're fortunate to have faith. When I started I had no faith, but have come to believe there is in fact something greater than myself that knows me, and cares for me. Your 4am worry will pass soon, and your recovery effort will challenge and strengthen you. God is with you, we here are with you. Keep posting.

Hal

You made my day Hal!
I know beyond a shadow of a doubt that there is a God who is the creator of heaven and earth that cares so much for you!!!!! May God reveal Himself to you in amazing ways Hal! I am praying for you!
Vivi

Lena Rose

Hi Vivi,
My husband was
Hi Vivi,

My husband was diagnosed with stage 3 Base of tongue SCC in March. I know that dreadful fearful feeling in the middle of the night and waking up crying in the morning. The fear of the unknown can get the best of you. My husband had 7 weeks of chemo/radiation; he is now 4 weeks post treatment. There is a slight improvement everyday. This board has and continues to help me along this journey that we never wanted to take. There's a ton of info on here. Stay strong-you will make it!