Feeling selfish and guilty
I was so excited when I first found this forum. Now I come here feeling selfish, guilty, and scared to continue reading. I have always been a person who likes to research and be prepared for all possibilities. Coming here and asking questions made me feel better, like I was preparing in some way for what was to come. Lately I read other posts and struggle, wanting to reply but feeling like I have nothing to add to the conversation. I have never had cancer. I have never watched my spouse suffer through something like this. My child has a disease I don't truly understand. I'm scared of what the future holds for him. All of the things that I am reading seem so hard to imagine. The Dr's have conversations with us about radiation and the possible consequences of future cancers when radiating a young child. They talk about recurrence rates and metastasis to other sites. As I read some of these posts I realize that some of you are living out these scenarios. My brain has had such a hard time comprehending the reality of the things the Dr's are telling us could happen in the future. Obviously, they are very real possibilities.
So first I have to apologize. I feel selfish for observing and learning from you all and having nothing to contribute. My son is three weeks into his proton radiation treatments. There are times when I want to reply but all I can think it's "what the heck do I know, I'm still learning the basics!" It occured to me recently that I don't know what the future looks like once you have this diagnosis. He finishes radiation in three weeks. And then what? We wait? Wait for what? Will we find ourselves waiting for the next crisis? How do you ever feel free of this disease? Are you ever free? How do you know if it is back? And finally, how on earth did you all ever get so smart about all this stuff?!? For now I will keep reading. For those of you suffering from a poor prognosis and relapses please know that my heart is with you and when I read your posts I say a prayer that God would lift you up and give you comfort and healing.
Kim
www.caringbridge.org/visit/gabenavarette
Comments
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you are doing it!
Kim,
We are many, but we work as one. You speak from the heart or from the mental and physical pain from H&N cancer. You listen, you comfort, you respond to your friends. Everyone is important here, it really is an exclusive club (nobody wants to be part of). Pre-cancer I knew very little now I know a little more, but mostly it is this understanding we each share that helps.
Technically, 5 years clean you are considered in the clear or “cancer free”. I speak that cautiously because once bitten, twice shy.
Matt
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Living...
That is the key word in your post above Kim, we are living....
Not many of us were well educated about cancer before we became victim. After you go through what many of us have, you become very educated. Sometimes more than you'd like, but you do...
Yes, it has a bad side, and not everyone survives, but considering the outcome these days as compared to 50 years ago, those of that do survive are many... Yes, some take with them battle scars, and countless numbers of us battle with the fear of recurrence stuck back in the memory...
But one very key factor in all of that.....
We are living....
As for feeling guilty....
No need, participation is voluntary..., we are going to be on here yapping anyways, so you're more than welcome to observe, or participate.
Don't let the what if's consume you...
All of us have been there done that... You pick up, regroup and deal with whatever the future holds.
Nothing is guaranteed in live, countless people lose that battle everyday, accidents, crashes, other health problems...
Make the best of each day, and live life like it's your last...
John
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Kim
My heart goes out to you. I can only say from my research on proton therapy that the side effects are expected to be signifcantly less than traditional radiation. I certainly hope so. As for the future, fear of recurrence, dealing with side effects, my advice is to take it as it comes and deal with it as it comes. Don't waste energy with worry of things that likely won't happen. I know that it is easier said than done when it comes to a child. Your son is in some of the best hands in the world at MDA.
Yes, there are milestones, I believe 2 years and 5 years are the biggest. Yes, routine scans cause anxiety and they are scary but they save lives.
Prayers for you and your family.
Candi
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Visit often
Hi Kim,
You are full of anxiety, especially being a mother of a son who certainly did nothing to deserve the ravages of cancer. Read here and please do post just as you have. We are here for you to lean on and one thing is certain. There is no other place on Earth where you can find folks who really know EXACTLY what you are going through and feeling. Please do post, even if it is a simple acknowlement of someone else expressing fear, doubt, or anything. Remember, simple things count and it helps you too just to state you connect here.
Keep reading and learning. You are certain to have questions so please post them. Being informed is power and power enables you to keep control of yourself, especially since you need to be there for your son.
Best to you,
Don
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Part of the family
Kim, i'm sorry your child is going through what he is going through. As a parent of 2 grown children, I can't imagine what you must feel as you watch your child go through the treatments. You are a caregiver to your son and as such you are more than qualified to post, answer, read, ask a question or anything you want at anytime. I don't know how old your son is but my heart goes out to you, him and your family and I hope he is old enough to understand what is happening and why.
I think to a certain extent we all wonder what the future holds. There are no guarantees in life and we all went through what we did because we really had no other choice. None of us would have wished this on our worst enemy but it was a means to an end, with the end result being to live and enjoy life. I didn't use this forum much when i was going through treatment as I had a friend that had a similar diagnosis to me but 2 years earlier so he was my "forum" but I wish I would have used this sooner as it has really helped me post treatment. Every scan and doctors appointment I have I am a little nervous as to what they might find/not find but I am doing well and continue to get better (8 months post tx) and if somewhere down the road they do find something I will deal with it with the help from my family and friends, as well as the friends I feel like I know on this site. It is my worst nightmare, and I know my family worries about it more than me but this is somethign none of us can control. I appreciate every day more than I ever did before, take nothing for granted and try and be extra nice to anyone I meet or touch during a day.
The collective wisdom on this site is incredible. Since everyone reacts differently to the treatments, someone on this site has probably had the same reaction as you are experiencing and can recommend something to help.
I am going to read your caringbridge site as soon as I get a chance. I'm in Asia this week so won't be sleeping much anyway:) I had a caringbridge site as well (link below) and it was so helpful to keep friends/family informed and was actually theraputic to put what I was feeling in words. Please stay strong for your son and rest assured that you have the prayers and positive energy of every person on this site sending positive vibes to you and your son.
Keith
http://caringbridge.org/visit/Keithbarber16/mystory
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I giggled to myself
about how smart I am about head and neck cancer.....then realized you probably aren't talking about me
. All I ever offer nowadays, is what it was like then, and what it is like now.....and I saw right in the beginning that researching any of this was only going to scare hell out of me. So I reached out here....the survivors forum, and got the real skinny on how to face this head on, without help from Google. I asked questions, tons of them during treatment.....I knew nothing, until I went through it myself....you're a caregiver, and there are other caregivers here.....don't short yourself on what you know.....you know more than you give yourself credit for.Drs. say a lot of things....many of which are "worst possible" scenerios.....it would be the rare physician who would ever say...."well, you've beat this, and it's never coming back".....As Matt said, "once bitten, twice shy"......I can see as parents you'd be scared for a child....but I'll bet money that Gabe won't be scared of it coming back. He'll finish treatment and the recovery period, and be back out there living as only children can do....
There is absolutely nothing for you to feel selfish or guilty about.....nothing real, anyway.....when you come here it's a second home.....a safe place to land....take advantage of knowing that anything goes here....all questions answered, or a need to get it out....everybody here is a virtual sister or brother....they care....so kick your shoes off, have a cup of tea...........relax....and send guilt and selfish packing.
p
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Gabe
Kim, I just read most of Gabe's caring bridge accounts. What a great kid and family! You'll be in our thoughts and prayers as you continue this journey. I'm sure you already know this but you're probably at one of, if not the, best care facilities in the world. You're in good hands....
Good Luck,
Keith
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Welcome KIm and John....Skiffin16 said:Living...
That is the key word in your post above Kim, we are living....
Not many of us were well educated about cancer before we became victim. After you go through what many of us have, you become very educated. Sometimes more than you'd like, but you do...
Yes, it has a bad side, and not everyone survives, but considering the outcome these days as compared to 50 years ago, those of that do survive are many... Yes, some take with them battle scars, and countless numbers of us battle with the fear of recurrence stuck back in the memory...
But one very key factor in all of that.....
We are living....
As for feeling guilty....
No need, participation is voluntary..., we are going to be on here yapping anyways, so you're more than welcome to observe, or participate.
Don't let the what if's consume you...
All of us have been there done that... You pick up, regroup and deal with whatever the future holds.
Nothing is guaranteed in live, countless people lose that battle everyday, accidents, crashes, other health problems...
Make the best of each day, and live life like it's your last...
John
Welcome KIm and John.... You could not have said it any better. My cancer has a 1 in 4 that it will come back. But that is really a 3 in 4 it WON'T. I go with the 3 in 4. Just take every day and try to be the best I can be and help someone if I can with this if I can.
Kim:
You will get through this as will your son. We will keep you all in our prayers.
PS: Keep posting if only to vent. We're here for that as well.
Bill
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KimKB56 said:Gabe
Kim, I just read most of Gabe's caring bridge accounts. What a great kid and family! You'll be in our thoughts and prayers as you continue this journey. I'm sure you already know this but you're probably at one of, if not the, best care facilities in the world. You're in good hands....
Good Luck,
Keith
Never feel guilty for not contibuting. You are contributing more than you realize just by joining us, whether it be in the form of a question, a comment, or just a virtual hug. We all need help or can offer it at one time or another.
My situation is a bit different as my daughter is a 5+ year colon cancer fighter. Unfortunately, her condition is declining. But over these last few years, I have learned much about colon cancer, most of it from my many friends on the colon cancer forum of this site. I too, was completely floored when my husband became an H&N patient. Knowing nothing about that type of cancer, I came here & was warmly welcomed by those here on this forum, who have become my friends as well. I was not able to contribute much of anything here except a lot of venting & a continuous cry for help.
I still have little to contribute as to the cancer, treatments, side effects, etc. Unfortunately, my husband swiftly lost his battle last year as treatments were barely beginning. I find that my place here is just to offer encouragement & maybe a hug or perhaps a shoulder to cry on when needed. I would not have made it this far without all these wonderful people who care.
My heart breaks for you as you endure your child's suffering. I understand it all too well. Love & live each day with your son to the fullest. Don't waste precious moments waiting for a recurrence that may never happen.
Luv,
Wolfen
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No apologies!
Welcome Kim,
i'm sorry you find yourself here- but -You have found a wonderful site. I am a care giver as well, my husband was the one with cancer. With that said, I was welcomed with open arms to ask questions and discuss my fears. Cancer in any form is scary and terrifying. It takes a while to really process the diagnosis and treatment. You will learn as you go, and never be afraid to ask questions on this site. Someone will be able to answer!
Day at a time, try to stay away from the "what ifs" as that will keep you from moving forward. You have to take care of yourself as best as you can because your health is just as important!
Prayers coming your way....
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kim, you have absolutely
kim, you have absolutely NOTHING to feel guilty about! i cannot imagine what you are going thru and feeling everyday watching your dear child go thru this terrible disease. we are here for you whenever you want to come here. please know that we are thinking of you and Gabe and praying for you daily. please try not to worry about stuff that may not happen and enjoy today as much as you can. sending positive thots and good mojo to you and Gabe. keep us posted.
God bless you and your family,
dj
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Kimdebbiejeanne said:kim, you have absolutely
kim, you have absolutely NOTHING to feel guilty about! i cannot imagine what you are going thru and feeling everyday watching your dear child go thru this terrible disease. we are here for you whenever you want to come here. please know that we are thinking of you and Gabe and praying for you daily. please try not to worry about stuff that may not happen and enjoy today as much as you can. sending positive thots and good mojo to you and Gabe. keep us posted.
God bless you and your family,
dj
I'm not very good with the computer but did look at Gabe's CaringBridge site. What an absolutely beautiful child! I read where he had a darkening on his neck. That is pretty normal and can come in varying degrees. Mine turned dark and peeled but never hurt or broke open. For those that had some oozing, most swear by a prescription called Silvadene (?) used on burns. If it worsens, I would ask about it. I used Aquaphor (over the counter) ointment. Greasy but may relieve his itching. Great for dry lips too. I was told to avoid sun in the head and neck region, especially for the first year. My doctor told me that they did not radiate below that area so not to be to concerned with the rest of my body, beyond the normal sunscreen. Use a good sunscreen and look on-line for a hat with SPF factor. I think mine came from the San Francisco Hat Co. I read that Gabe has concerns with the "cool factor" of a hat with a brim but maybe you can find one that meets his approval on-line. Last summer, I knew I couldn't keep a hat on in the boat and found that a lightweight hooded sweatshirt served the purpose while we were moving. Maybe Gabe would buy into the hooded sweatshirt for some protection.
Please don't hesitate to ask for ideas...it's our way of paying back and there is no one we would like to help more than your adorable son.
God Bless,
Candi
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no guilthwt said:Kim
I'm not very good with the computer but did look at Gabe's CaringBridge site. What an absolutely beautiful child! I read where he had a darkening on his neck. That is pretty normal and can come in varying degrees. Mine turned dark and peeled but never hurt or broke open. For those that had some oozing, most swear by a prescription called Silvadene (?) used on burns. If it worsens, I would ask about it. I used Aquaphor (over the counter) ointment. Greasy but may relieve his itching. Great for dry lips too. I was told to avoid sun in the head and neck region, especially for the first year. My doctor told me that they did not radiate below that area so not to be to concerned with the rest of my body, beyond the normal sunscreen. Use a good sunscreen and look on-line for a hat with SPF factor. I think mine came from the San Francisco Hat Co. I read that Gabe has concerns with the "cool factor" of a hat with a brim but maybe you can find one that meets his approval on-line. Last summer, I knew I couldn't keep a hat on in the boat and found that a lightweight hooded sweatshirt served the purpose while we were moving. Maybe Gabe would buy into the hooded sweatshirt for some protection.
Please don't hesitate to ask for ideas...it's our way of paying back and there is no one we would like to help more than your adorable son.
God Bless,
Candi
please no guilt.
Feel welcome.
Great people here and comfort.
Vicki
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Cool factorhwt said:Kim
I'm not very good with the computer but did look at Gabe's CaringBridge site. What an absolutely beautiful child! I read where he had a darkening on his neck. That is pretty normal and can come in varying degrees. Mine turned dark and peeled but never hurt or broke open. For those that had some oozing, most swear by a prescription called Silvadene (?) used on burns. If it worsens, I would ask about it. I used Aquaphor (over the counter) ointment. Greasy but may relieve his itching. Great for dry lips too. I was told to avoid sun in the head and neck region, especially for the first year. My doctor told me that they did not radiate below that area so not to be to concerned with the rest of my body, beyond the normal sunscreen. Use a good sunscreen and look on-line for a hat with SPF factor. I think mine came from the San Francisco Hat Co. I read that Gabe has concerns with the "cool factor" of a hat with a brim but maybe you can find one that meets his approval on-line. Last summer, I knew I couldn't keep a hat on in the boat and found that a lightweight hooded sweatshirt served the purpose while we were moving. Maybe Gabe would buy into the hooded sweatshirt for some protection.
Please don't hesitate to ask for ideas...it's our way of paying back and there is no one we would like to help more than your adorable son.
God Bless,
Candi
Sunday afternoon makes a wonderful SPF hat. There are wonderful shirts with SPF. I am very cautious about the sun and one of my twin grandson's has very fair skin. My husband recently had MOh's surgery for basal cell cancer on his nose, he purchased a hat. Make it a family thing, it won't hurt for the entire family to be cautious in the sun. I was a kindergarten teacher, one of the children in my class had been mauled by a dog. When she returned back to school, her hair had been cut very short and she wore a cap. Mom was worried that children would make fun of her. I let the mom know that I also wore a hat when we went outside. I showed the mom my scars (I have many from various surgeries). Before the child returned to class I talked to the children about my scars and short hair and talked to them about how words can hurt people as much as hitting someone. We returned to that conversation often. The child knew it was safe in my class and she could come to me if something was said outside at recess.
Please do not feel that you do not belong here. You belong here for your son and for us. I appreciate all of the prayers that are going out for me and my friends. Please stay in contact and let us know how your son is doing (and how you are doing).
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Having a bad night
I was on the phone with my husband earlier today when I heard him ask Gabe if he was going to throw up. They were driving home from the store. Gabe has been throwing up ever since. He took some anti-nausea medicine and has been sleeping for awhile now. A burn appeared on his neck and cheek a few days ago. We knew what the potential side effects were. I suppose I knew this day would come. I hurt that I am not there with him. I fly back to Houston on Thursday. I feel sick. He's 10 and he needs his momma and I am not there. Cancer sucks.
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Having a bad night.....Sorrykimnavarette said:Having a bad night
I was on the phone with my husband earlier today when I heard him ask Gabe if he was going to throw up. They were driving home from the store. Gabe has been throwing up ever since. He took some anti-nausea medicine and has been sleeping for awhile now. A burn appeared on his neck and cheek a few days ago. We knew what the potential side effects were. I suppose I knew this day would come. I hurt that I am not there with him. I fly back to Houston on Thursday. I feel sick. He's 10 and he needs his momma and I am not there. Cancer sucks.
Sorry you are having a bad night and Gabe had a bad day as well. Children are resillant and bounce back better than adults do. They know you want to be there with him and they do understand. When my son was 21 [seven years ago] he was in a very bad auto accident and we wern't sure if he would make it. He did, but that day I went from being Dad to Daddy which he never called me. He wanted me by his side at all times, but knew I needed to go home and sleep while his mother stayed. He would remind me I needed to go get some sleep. I did, and came back in a few hours and stayed from 5 in the afternoon to 10 in the morrning, for nineteen days. So when I went to have my surgery he felt he needed to be there for me. He was...
You have done the reserch on his illness and he knows, you know what to expect and that makes him, and your husband feel better. You are the "go to" person for advice. Just remember you need to take care of yourself to be able to take care of them. You are there shock absorber for the bumpy road that is ahead.
Everyone at H&N C will be there for you and your family. Try to get some well needed sleep.
Bill
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feeling overwhelmed
I am feeling the same way too Kim. We are waiting to see if my husband has tonsil/tongue cancer and have been sent to so many doctors, had so many test, several biopsies, and we still don't know anymore than we did the day our PCP referred us to a specialist for a lump on my husband's neck. I'm overwhelmed with everything we're getting hit with. He's grouchy and tired and in pain. I'm trying to make him feel better and it's not happening. Everything just seems helter skelter right now and I'm really doubting myself at being able to be a good support system for my husband. It's all so confusing right now.
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Introduce yourselfdeb1125wa said:feeling overwhelmed
I am feeling the same way too Kim. We are waiting to see if my husband has tonsil/tongue cancer and have been sent to so many doctors, had so many test, several biopsies, and we still don't know anymore than we did the day our PCP referred us to a specialist for a lump on my husband's neck. I'm overwhelmed with everything we're getting hit with. He's grouchy and tired and in pain. I'm trying to make him feel better and it's not happening. Everything just seems helter skelter right now and I'm really doubting myself at being able to be a good support system for my husband. It's all so confusing right now.
Welcome. You might want to start a new post and introduce yourself. This is a great support group. Stick with us and we will all help you out with this roller coaster ride.
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Biopsy... ~ DEBdeb1125wa said:feeling overwhelmed
I am feeling the same way too Kim. We are waiting to see if my husband has tonsil/tongue cancer and have been sent to so many doctors, had so many test, several biopsies, and we still don't know anymore than we did the day our PCP referred us to a specialist for a lump on my husband's neck. I'm overwhelmed with everything we're getting hit with. He's grouchy and tired and in pain. I'm trying to make him feel better and it's not happening. Everything just seems helter skelter right now and I'm really doubting myself at being able to be a good support system for my husband. It's all so confusing right now.
Also, I'm not sure who did the biopsy, but there's no excuse to not have been diagnosed after one....
My ENT told be within minutes (actually my wife before I woke from tonsils coming out), that I was STGIII SCC Tonsil Cancer. So if you don't hear/know something soon..., like today. You might want to get your copies of the biopsy results and seek a facility that communicates better....
Like mentioned also..., start a new thread, give your specifics, and people will be more than glad to help you in whatever way they can with information.
Best,
John
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