ENB diagnosis this week
So something I thought I would never say, I have cancer. Wow seems like a terrible diesase that the other guy gets. Still quite stunned and very emotional, which for me is new and terrifying all in its self.
I recently had a nosebleed that was out of control and I couldn't get it to slow down let alone stop the bleeding. After 45 mins I went to the emergency room and they used inflatable packing to get the bleed under control. Well after a visit with Head and Neck surgeon they found a mass. Biopsy revealed ENB stage 1. I know it's very lucky to catch this early on but the rairity of the desease is alarming because there are not a lot of stories out there from people that went through treatment and what it's actually like. I have Kaiser healthcare and they are putting my case up for review by a cancer board to make a treatment plan. I think the worst part is waiting a week to find out what the plan will be.
I have always been independant & self reliant. Reading other posts this attitude will not work in this fight. I am worried about the burden this is going to put on my wife. I'm glad its me with the cancer, I really think it will be harder on her than me. Dont get me wrong I am scared and fearing the road to recovery. I know from the research I have done this is going to be the toughest thing I have ever faced. It's just that I'm very stubborn and feel that I will take whatever comes my way and beat this thing but I am mad as hell that my wife is going through this journey. What can I do to help her? She is the most important thing in my life and I can't stand the thought of her going through this
Comments
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Help for the Caregiver
Welcome to the group. Waiting is part of the game; waiting for test results, treatment plans, getting the therapy started. My journey with cancer started 16 months ago, and I've been cancer free for the last eleven. It will be rough seas for a while, but consider everyone here to be your crew. (Saw your boating picture.) Head and neck cancers are not that common, so it will be good for you and your wife to connect with others who have been through it. There is even a caregiver's group on this site your wife might like to join. Make sure you don't keep your cancer a secret because most women need to be able to share their feelings. Support from friends and family will be very comforting for her. I wish you the best and will add you to my prayers if you like.
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welcome to the machine
Bsauls94518,
Welcome to the H&N forum, sorry for the reason.
What you can do to help your wife is buy her a ticket for seven weeks in the Bahamas. That way she can see you post treatment and not miss all the glamour.
Be honest with her, she can be the most important member of your treatment team. She can’t read your mind so keep her informed on how you’re feeling both physically and mentally.
Be prepared, look through the superthread, I think there’s still a list of must haves in there.
Start drinking lots of water and be prepared to drink lots of water and swallow, swallow, swallow every day.
Good luck,
Matt
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1 + 1 is more than 2
BSauls, I'm glad you found this board, but sorry you are in need of it. Speaking as a spouse....who says your wife doesn't want to walk this road with you? I understand wanting to spare her the trial that lies before you, but together you are stronger and better able to face the evil that is cancer. Cancer is horrible, it is evil, but I'll tell you a secret...battling this cancer has brought the relationship I have with my husband to a level I never thought possible...and we were pretty devoted to one another after 30 years of marriage. Cancer has made our commitment to one another even stronger.
How can you help her? Be honest, share your worries, your pain and your hopes for a good outcome. Remember to touch her face and stroke her hair every once in a while. Allow other people to lend a hand. Let your wife express her feelings and give her time to cry if she needs it. Try to find something to laugh about at least once a day.
Use the board here to ask questions and get support. We'll be praying for a good outcome and will lend moral support for every step you both take.
Barbara
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Thanks MattCivilMatt said:welcome to the machine
Bsauls94518,
Welcome to the H&N forum, sorry for the reason.
What you can do to help your wife is buy her a ticket for seven weeks in the Bahamas. That way she can see you post treatment and not miss all the glamour.
Be honest with her, she can be the most important member of your treatment team. She can’t read your mind so keep her informed on how you’re feeling both physically and mentally.
Be prepared, look through the superthread, I think there’s still a list of must haves in there.
Start drinking lots of water and be prepared to drink lots of water and swallow, swallow, swallow every day.
Good luck,
Matt
Who would have thought drinking water and swallowing would be a big deal? I do see on several threads the things we take for granted will become a big deal. Thanks for the advice and well wishes.
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You are rightBarbaraek said:1 + 1 is more than 2
BSauls, I'm glad you found this board, but sorry you are in need of it. Speaking as a spouse....who says your wife doesn't want to walk this road with you? I understand wanting to spare her the trial that lies before you, but together you are stronger and better able to face the evil that is cancer. Cancer is horrible, it is evil, but I'll tell you a secret...battling this cancer has brought the relationship I have with my husband to a level I never thought possible...and we were pretty devoted to one another after 30 years of marriage. Cancer has made our commitment to one another even stronger.
How can you help her? Be honest, share your worries, your pain and your hopes for a good outcome. Remember to touch her face and stroke her hair every once in a while. Allow other people to lend a hand. Let your wife express her feelings and give her time to cry if she needs it. Try to find something to laugh about at least once a day.
Use the board here to ask questions and get support. We'll be praying for a good outcome and will lend moral support for every step you both take.
Barbara
I suppose I didn't even look at it from her point of view. Typical man wanting to protect and control instead of listen and ask for help LOL. We have been married for 23 years this Sunday and I suppose fighting this cancer will bring us closer together. Its frustrating to see her so sad and there is nothing I can do about it. This too shall pass, we just have to stay strong together. Thank you for sharing your perspective on this.
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HelpMrsBD said:Help for the Caregiver
Welcome to the group. Waiting is part of the game; waiting for test results, treatment plans, getting the therapy started. My journey with cancer started 16 months ago, and I've been cancer free for the last eleven. It will be rough seas for a while, but consider everyone here to be your crew. (Saw your boating picture.) Head and neck cancers are not that common, so it will be good for you and your wife to connect with others who have been through it. There is even a caregiver's group on this site your wife might like to join. Make sure you don't keep your cancer a secret because most women need to be able to share their feelings. Support from friends and family will be very comforting for her. I wish you the best and will add you to my prayers if you like.
Thanks MrsBD, I will pass along the caregivers group to her. We have a ton to learn and I'm glad to have folks like you that are willing to share! I look forward to new crew, and if you are in the S.F Bay Area you are welcome aboard anytime.
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Your wife
As a caregiver to my husband, I went with him to every treatment and every doctor appointment. I was with him every step of the way, but he made all the decisions when it came to his treatment and how he would proceed. My saying was "I was only along for the ride" and I also told your grown sons that they should honor their father's wishes. He fought the good battle for 5 years but lost it in July, one month short of our 53rd anniversary. During our journey I did find that he wouldn't tell the doctors the truth about his pain or basically how he was doing, so I would speak up and tell them and of course, got dirty looks from my husband. LOL
Yes it will be hard on her but treatment will also be hard on you. Like everyone will tell you drink plenty of water to stay hydrated and swallow, swallow, swallow even though it will hurt. Radiation, if you have it, is the gift that keeps giving and giving. We were told going in that not many complete radiation due to the side effects but my husband actually completed two different rounds of radiation treatments 2 years a part.
I found during my husband's journey that this site was an excellent source for help. But I also found that doing research and looking at cure rates, etc. was different regardless of what site you go on. My husband's second primary was considered a rare spot and survival with or without treatment was the same. Well he outlived those survival rates. At his age (73) when he first underwent radiation, chemo and then surgery our head and neck specialist was very surprised at how well he did and was always telling us he should be the poster boy for head and neck surgery. It was always a joke with us. Be confident in your doctors and if you don't agree with them, get a second opinion or even a third. I remember my brother-in-law had to fight with Kaiser when my sister was diagnosed with breast cancer about her treatment and doctors. I also found during our journey that I had to fight with our insurance regarding approval/payment of certain tests. But we always won.
Have your wife read the posts on this site for help. It won't be easy for either of you but both of you need to take care of yourself. Don't hide things from her. Many don't tell their spouses what they are thinking or how they feel. They tend to shut them out because they think it is helping their spouse when in reality it is hurting them.
Wishing you and your wife peace and comfort -- Sharon
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Welcome Bsauls...
This forum is a great place to land after getting a diagnosis....it took me a while to be able to put my name and the word cancer into the same sentence and have it make sense.....they just didn't go together. This time between diagnosis and starting treatment is the most emotionally trying....once treatment starts and you are no longer a bystander but an active participant in fighting the beast, you'll feel more in control.
Independent and self reliant pretty much sums up all of us at the time of diagnosis. I couldn't picture my husband as a nursemaid...and I was lining up my sisters to take a lot of the load. It hurt his feelings, and I felt awful about that. He morphed into the best nurse, support person, cook, ride giver that ever existed. He made me laugh many times a day....it was wonderful, and we got closer than I ever thought could happen, too. We still are 3 years later! I was grateful for being cared for and loved....and I let him know that every single day.
There are a couple of others on here who have had ENB.....hopefully you'll hear from them.
p
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Your WifeLadylacy said:Your wife
As a caregiver to my husband, I went with him to every treatment and every doctor appointment. I was with him every step of the way, but he made all the decisions when it came to his treatment and how he would proceed. My saying was "I was only along for the ride" and I also told your grown sons that they should honor their father's wishes. He fought the good battle for 5 years but lost it in July, one month short of our 53rd anniversary. During our journey I did find that he wouldn't tell the doctors the truth about his pain or basically how he was doing, so I would speak up and tell them and of course, got dirty looks from my husband. LOL
Yes it will be hard on her but treatment will also be hard on you. Like everyone will tell you drink plenty of water to stay hydrated and swallow, swallow, swallow even though it will hurt. Radiation, if you have it, is the gift that keeps giving and giving. We were told going in that not many complete radiation due to the side effects but my husband actually completed two different rounds of radiation treatments 2 years a part.
I found during my husband's journey that this site was an excellent source for help. But I also found that doing research and looking at cure rates, etc. was different regardless of what site you go on. My husband's second primary was considered a rare spot and survival with or without treatment was the same. Well he outlived those survival rates. At his age (73) when he first underwent radiation, chemo and then surgery our head and neck specialist was very surprised at how well he did and was always telling us he should be the poster boy for head and neck surgery. It was always a joke with us. Be confident in your doctors and if you don't agree with them, get a second opinion or even a third. I remember my brother-in-law had to fight with Kaiser when my sister was diagnosed with breast cancer about her treatment and doctors. I also found during our journey that I had to fight with our insurance regarding approval/payment of certain tests. But we always won.
Have your wife read the posts on this site for help. It won't be easy for either of you but both of you need to take care of yourself. Don't hide things from her. Many don't tell their spouses what they are thinking or how they feel. They tend to shut them out because they think it is helping their spouse when in reality it is hurting them.
Wishing you and your wife peace and comfort -- Sharon
Thanks Lady for the words of wisdon. Being here is helping because of the people like you who share your stories and give me hope. I konw i am in some weird stage of denial or just not accepting how really tough this is going to be and it's very reassuring that I can hear stories about what others went through. Our 23rd anniversary is tomorrow and I can't imagine not being there to see our 50th so I am going to fight and do whatever is asked of me to be healthy again.
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Welcomephrannie51 said:Welcome Bsauls...
This forum is a great place to land after getting a diagnosis....it took me a while to be able to put my name and the word cancer into the same sentence and have it make sense.....they just didn't go together. This time between diagnosis and starting treatment is the most emotionally trying....once treatment starts and you are no longer a bystander but an active participant in fighting the beast, you'll feel more in control.
Independent and self reliant pretty much sums up all of us at the time of diagnosis. I couldn't picture my husband as a nursemaid...and I was lining up my sisters to take a lot of the load. It hurt his feelings, and I felt awful about that. He morphed into the best nurse, support person, cook, ride giver that ever existed. He made me laugh many times a day....it was wonderful, and we got closer than I ever thought could happen, too. We still are 3 years later! I was grateful for being cared for and loved....and I let him know that every single day.
There are a couple of others on here who have had ENB.....hopefully you'll hear from them.
p
Hi phrannie,
I know my wife will be awesome at the care giver position. She is my soul mate and the best thing in my life. It is great to hear that it brought you guys closer as I worry about the stress and strain that treatment will bring. I guess the best thing I can do is play the cancer card and line up her support team. She is very strong and I don't wnat others to think we got this and not offer up help. Just reading these posts makes me feel that I am not alone and we can tap support from so many others!
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Welcome to the H&N Group
First welcome to the H&N group. Very sorry you need to be here. Not only does this scare you but it is more unknown to your wife and is extreamly hard on them. This it where you both must talk and explain and share your emotions. Yours is a rare one but if I remember we did have at least one or two who did have this and did fine. I will agree with all the others as you should read the superthread as it will help. I had only surgery so I can't really answer much on chemo or radiation as my knowledge is from just being here. Mine was SCC of the larynx. it was 3cm just above my vocal cords and pressing on the left one. Just before surgery it was staged as T4;N2;M0; but after is was only T3; N0;M0; so it can change when they do treatment. My lungs are bad and the only way they would do the syrgery was if they removed my whole larnyx and I breath through my neck, which I agreed to that as thet asked the question. I waqs prepaired for almost anything they could say, just wes not ready for that. Only five belived I would pull through this as I was Very pale and very gray in color and was coughing lots of blood. Of the five that did belive I was one and my wife, doctor, and only two at work out of 250, and my son and brother did not really believe, just hoped.
The reason I mentioned that is many were talking to my wife and telling her to be prepaired that I might not make it through the surgery. She did not want to go there and for herself needed to belive in me. She would even have to tell her family and friends, not to talk to her like that. She is very strong is a understatment, as she became my rock I needed. I am a lot like you that I am very self reliant and have always been, even when My lung colapsed when I was about 31 and it did it twice and aone infections like Valley feavor which has scared my lungs, and stage 3 COPD. That is why many were afread I would not make it. I told my wife not to wory that as soon as they cut out the tumor, I will be fine and I will even go back to work in ten weeks. I had to learn how to swallow, and talk all over as I had no voice box. I went back to work in 10 weeks just like I said. To make this much easier on your wife she need to hear from you how you are doing honestly. She need to know you are scared or even worried, but she has to do the same for you.
This is a very rough road you are going down and can get real bad at times. You can and will get through this as others have, but it is a fight for your life. Sorry if I get a little blunt, but you will need to know the truth. As of now you are not alone in this fight. We all will be there for support for you and your wife as well. We have many caregivers in the group and they all know how hard it can be on her. When you have those bad days just remember, take it one day at a time. What happened yesterday does not matter as that day is gone. Today is the day that matters. You just do day by day and on some very bad ones, you go hour by hour. You will have the strength to overcome so much more than you can imagen. Sorry if I get long winded, but I am very passionate about this, and know you will get through this. I will keep you in my thoughts and prayers. Also remember we're open 24/7 it you just need to talk, have questions, and vent.
Bill
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Billwmc said:Welcome to the H&N Group
First welcome to the H&N group. Very sorry you need to be here. Not only does this scare you but it is more unknown to your wife and is extreamly hard on them. This it where you both must talk and explain and share your emotions. Yours is a rare one but if I remember we did have at least one or two who did have this and did fine. I will agree with all the others as you should read the superthread as it will help. I had only surgery so I can't really answer much on chemo or radiation as my knowledge is from just being here. Mine was SCC of the larynx. it was 3cm just above my vocal cords and pressing on the left one. Just before surgery it was staged as T4;N2;M0; but after is was only T3; N0;M0; so it can change when they do treatment. My lungs are bad and the only way they would do the syrgery was if they removed my whole larnyx and I breath through my neck, which I agreed to that as thet asked the question. I waqs prepaired for almost anything they could say, just wes not ready for that. Only five belived I would pull through this as I was Very pale and very gray in color and was coughing lots of blood. Of the five that did belive I was one and my wife, doctor, and only two at work out of 250, and my son and brother did not really believe, just hoped.
The reason I mentioned that is many were talking to my wife and telling her to be prepaired that I might not make it through the surgery. She did not want to go there and for herself needed to belive in me. She would even have to tell her family and friends, not to talk to her like that. She is very strong is a understatment, as she became my rock I needed. I am a lot like you that I am very self reliant and have always been, even when My lung colapsed when I was about 31 and it did it twice and aone infections like Valley feavor which has scared my lungs, and stage 3 COPD. That is why many were afread I would not make it. I told my wife not to wory that as soon as they cut out the tumor, I will be fine and I will even go back to work in ten weeks. I had to learn how to swallow, and talk all over as I had no voice box. I went back to work in 10 weeks just like I said. To make this much easier on your wife she need to hear from you how you are doing honestly. She need to know you are scared or even worried, but she has to do the same for you.
This is a very rough road you are going down and can get real bad at times. You can and will get through this as others have, but it is a fight for your life. Sorry if I get a little blunt, but you will need to know the truth. As of now you are not alone in this fight. We all will be there for support for you and your wife as well. We have many caregivers in the group and they all know how hard it can be on her. When you have those bad days just remember, take it one day at a time. What happened yesterday does not matter as that day is gone. Today is the day that matters. You just do day by day and on some very bad ones, you go hour by hour. You will have the strength to overcome so much more than you can imagen. Sorry if I get long winded, but I am very passionate about this, and know you will get through this. I will keep you in my thoughts and prayers. Also remember we're open 24/7 it you just need to talk, have questions, and vent.
Bill
Thank you for the blunt words, I really don't need any sugar coating. I went into this thinking it's not possible to be a tumor everything is ok. Well it is a tumor and a rare one at that but it's sill ok. I have just gained a new tribe to belong to and my path has changed. We recently started planing on making a iife change and moving to the country to get out of the S.F Bay Area. Sold our house, moved into the rental house and started fixing it up to put on the market. This all stared as I made plans for remodeling, bought supplies and set asiide time to get to work. Wow..... I guess that will be on hold for a bit. The only thing I can be sure of is this will be a rough patch that will make our ultimate move that much better. I am glad to meet you and thanks for sharing your story.
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There was a young girlBsauls94518 said:Welcome
Hi phrannie,
I know my wife will be awesome at the care giver position. She is my soul mate and the best thing in my life. It is great to hear that it brought you guys closer as I worry about the stress and strain that treatment will bring. I guess the best thing I can do is play the cancer card and line up her support team. She is very strong and I don't wnat others to think we got this and not offer up help. Just reading these posts makes me feel that I am not alone and we can tap support from so many others!
on here most of last year with the same dx as you have....her screen name is Goyca....if you go down to the end of her "story" page, there is a place to send a private message to her...that in turn will send a message to her email letting her know there is someone here messaging her. She made it through this with flying colors....so would be a great person to talk to.
Her page is:
http://csn.cancer.org/user/225322
p
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I was given a second chance on life...for a reasonBsauls94518 said:Bill
Thank you for the blunt words, I really don't need any sugar coating. I went into this thinking it's not possible to be a tumor everything is ok. Well it is a tumor and a rare one at that but it's sill ok. I have just gained a new tribe to belong to and my path has changed. We recently started planing on making a iife change and moving to the country to get out of the S.F Bay Area. Sold our house, moved into the rental house and started fixing it up to put on the market. This all stared as I made plans for remodeling, bought supplies and set asiide time to get to work. Wow..... I guess that will be on hold for a bit. The only thing I can be sure of is this will be a rough patch that will make our ultimate move that much better. I am glad to meet you and thanks for sharing your story.
You are very welcome. I feel I was given a second chance on life. So I stay active in several support groups, this one is very special as they were there for me in some dark times. You can read my story if you click on my photo and if you go to expressions there is a few videos I was asked to do by Stanford Medical to help outher laryngecyomee's see they can do things they were told they can't do, but can if you really try. It took two months to relearn how to whistle working everyday and almost all day long, but I can whistle, and told it can't be done. Some of the photos are not PG as I was cut from ear to ear and have a hole in my neck. Was not sure if my wife could stand to even look at me with it. That never mattered to her. I am envolved is the WebWhispers support group as Admin and help with there web site and Facebook group as well. They are world wide so I can, and have been able to help many get tested for COPD as there are told it can not be done to a neck breather. Yes it can, you just have to think outside of the box and thay have now been tested. The Tech that did mine, after saying he has done this for 35 years and can't do it. I showed him it is really easy to do and now many are getting help. I also give anti-tobacco talks to highschool kids as I did smoke for 42 years and did enjoy it. I quit cold turkey and never picked one up again and have no craving and can even be by someone who does smoke and it does not bother me, except I wish they didn't but understand how hard to quit is.
I now have a different pourpose in life and live it to the fullest. When I listen to the song, Bridge over troubled waters, it now has a different meaning, as my wife became my bridge. You will both get through this together.........
Bill
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Inspiration
Bill, I am glad you were given a second chance because I really needed to hear what you have to say. What you have gone through is amazing. I can see thet with the right midset and determined team members supporting me I can beat this. I will probably be reaching out to you once things get going in my treatment right now it's hurry up and wait.
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Anytime you need, or want.....Bsauls94518 said:Inspiration
Bill, I am glad you were given a second chance because I really needed to hear what you have to say. What you have gone through is amazing. I can see thet with the right midset and determined team members supporting me I can beat this. I will probably be reaching out to you once things get going in my treatment right now it's hurry up and wait.
Anytime!
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Thanks!phrannie51 said:There was a young girl
on here most of last year with the same dx as you have....her screen name is Goyca....if you go down to the end of her "story" page, there is a place to send a private message to her...that in turn will send a message to her email letting her know there is someone here messaging her. She made it through this with flying colors....so would be a great person to talk to.
Her page is:
http://csn.cancer.org/user/225322
p
Thanks for the info!
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bs, i'm sorry you needed to
bs, i'm sorry you needed to find us but very glad you did. you will find lots and lots of great info here. take a look at the super thread. it is chocked full of great info. it is sad that your wife has to go through this as did my hubby. it is hard on them but they'd have it no other way. just always be kind, even when you're having a bad day, and you will have bad days. realized that even as much as your wife loves you, she can never understand 100% what you're going through and how you feel. i think that is the hardest for our caregivers. there are many here who are caregivers and not patients. perhaps your wife would like to join our family also. we don't descriminate, we love caregivers too..........lol. she would also find lots of help, encouragement, answers, friends and more here. you are in for a battle so gear up and get prepared. it will be a rough time but one you and your wife will get through. we will be on the sideline cheering you on. and just so you know, all is fair on this site. we don't mind if you need to vent, hollar, cry, laugh, celebrate, we do it all. so, know that you are NOT alone and we are here for you and your wife and will help you through. now get ready by eating as much as you can, while you can and drink water, all day-every day. do you best to keep a positive attitude, it truly helps you get through.
God bless you,
dj
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DJdebbiejeanne said:bs, i'm sorry you needed to
bs, i'm sorry you needed to find us but very glad you did. you will find lots and lots of great info here. take a look at the super thread. it is chocked full of great info. it is sad that your wife has to go through this as did my hubby. it is hard on them but they'd have it no other way. just always be kind, even when you're having a bad day, and you will have bad days. realized that even as much as your wife loves you, she can never understand 100% what you're going through and how you feel. i think that is the hardest for our caregivers. there are many here who are caregivers and not patients. perhaps your wife would like to join our family also. we don't descriminate, we love caregivers too..........lol. she would also find lots of help, encouragement, answers, friends and more here. you are in for a battle so gear up and get prepared. it will be a rough time but one you and your wife will get through. we will be on the sideline cheering you on. and just so you know, all is fair on this site. we don't mind if you need to vent, hollar, cry, laugh, celebrate, we do it all. so, know that you are NOT alone and we are here for you and your wife and will help you through. now get ready by eating as much as you can, while you can and drink water, all day-every day. do you best to keep a positive attitude, it truly helps you get through.
God bless you,
dj
Thanks so much for your input! I am looking forward to getting started, the waiting is really hard to take. I know treatment will be very rough but imagining how it will go or what types of treatmet I will undergo lets my crazy imagination run free. I will remember to be kind, thanks for mentioning that! Everyone on this discussion board is a blessing and I appreciate all you guys so much.
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welcome
Glad you found us here. Best place to get the real story from cancer survivors. Given your attitude and diagnosis, you will march right through treatment and recovery. But nobody gets a free trip; you are sure to get roughed up a bit. About a year out of treatment, I switched plans and went to Kaiser in WC for ahwile before going back to a PPO and hooking back up with my original team. Kaiser will take care of you just fine. If you have time try to select one of the doctors whom you connect with.
If you have other questions about cancer care in the East Bay, send me a private message. Meeting for coffee is nice; quite a trill to meet face to face.
Don
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