Isolation and anxiety

Hi,
I just joined this forum, looking to hear how other people live with uncertainty. I was diagnosed with low grade stage one nhl in April, 2011, one enlarged inguinal node removed, followed by radiation to the groin in June/July. I was very sick from the radiation, but docs maintain that my reaction is uncommon. I'm very fit, and pretty healthy emotionally, but have had a very terrifying few months. They are hopeful that i am cured, which is possible in rare casesof stage one, but close followup is now the plan. Scanning every 3/4 months for several years. One of my doctors says that he would never use the word cure, but the othertwo oncologists i am with are using the word. I am left thinking that once a person has a cancer diagnosis, there is no certainty for therest of their life. Is it more uncertain with NHL, or is it that way for all cancer survivors ? My experience is too acute for the anxiety to be totally under control. Sometimes i wake up in the middle of the night filled with worry, thinking of the unknown, wondering what will happen to me.
I am not alone, i have good family support, but hate the fact that i seem to be this big ball of cancer worry, radiation effects, all about me, when there is life out there just like before. I was pretty happy before, and don't feel th need for an epiphany. I wonder how other people find the new normal i read about. There is a huge beast around my neck called fear, and i want to release it. I am 49, am a fighter, never give up kind of person. I am wondering how I am supposed to livenow.
In addition, a lot of people have bragged to me about how they had no side effects from radiation, leaving me feeling as if i had better shut up about it. Alot of my friends have been very good, but they want me to be happy and get on with it. They don't understand the fear.
Anyone want to give me some thoughts, please?I am much better now from the radiation, and have resumed my normal activities.

Comments

  • catwink22
    catwink22 Member Posts: 281
    Happy Places
    Hi violinist, I'm thinking you must play by your name, how wonderful to have that ability! Are you able to lose yourself when you play? Maybe that's the escape you need once in awhile. I have not had radiation so I can't give you any insight to that treatment, but I do know that we are all individuals and react differently to everything. Your side effects are your own and no one else's (unfortunately), it is what it is and phooey to those who can't see that. The fear is by far the hardest emotion to deal with. I guess the fear of the unknown is something we deal with everyday even if it's not with cancer. I had a time when I couldn't stop the thoughts of dying. Your mind gets a motor of it's own and runs and runs. I had to verbally out loud say to myself "STOP." And I would force myself to think of the beach with the waves splashing, the sun shining and the hot sand on my feet. Or the coolness of the woods and the birds chirping - my happy places. When the fear starts to creep in tell yourself "STOP!" you may even have to say it out loud at first and then go to your happy place. If you keep doing this it sort of re-trains your brain to let go. It doesn't make the fear go away, but it does make it manageable and fear isn't always a bad thing, it means you have something to lose. I hope you find the comfort and strength you need to start living the way you want. Best Wishes! Cat
  • violinist1
    violinist1 Member Posts: 33
    Dear catwink,
    I am so glad you answered me as any kind of encouragement helps! I started feeling a bit sick from the radiation right after i wrote that post, and it affects my mind as well as mybody. Makes sense, as the body includes my head! I got myself under controlthough. As far as what you said, i found that repeating the words"give up trying to figure cancer out" has helped me a lot when i start to panic. I guess it is another way of stopping. I believe in behavioral therapy and i am doing it to save my sanity.
  • violinist1
    violinist1 Member Posts: 33
    Dear catwink,
    I am so glad you answered me as any kind of encouragement helps! I started feeling a bit sick from the radiation right after i wrote that post, and it affects my mind as well as mybody. Makes sense, as the body includes my head! I got myself under controlthough. As far as what you said, i found that repeating the words"give up trying to figure cancer out" has helped me a lot when i start to panic. I guess it is another way of stopping. I believe in behavioral therapy and i am doing it to save my sanity.
  • violinist1
    violinist1 Member Posts: 33
    Dear catwink,
    I am so glad you answered me as any kind of encouragement helps! I started feeling a bit sick from the radiation right after i wrote that post, and it affects my mind as well as mybody. Makes sense, as the body includes my head! I got myself under controlthough. As far as what you said, i found that repeating the words"give up trying to figure cancer out" has helped me a lot when i start to panic. I guess it is another way of stopping. I believe in behavioral therapy and i am doing it to save my sanity.
  • violinist1
    violinist1 Member Posts: 33
    Dear catwink,
    I am so glad you answered me as any kind of encouragement helps! I started feeling a bit sick from the radiation right after i wrote that post, and it affects my mind as well as mybody. Makes sense, as the body includes my head! I got myself under controlthough. As far as what you said, i found that repeating the words"give up trying to figure cancer out" has helped me a lot when i start to panic. I guess it is another way of stopping. I believe in behavioral therapy and i am doing it to save my sanity.
  • violinist1
    violinist1 Member Posts: 33
    Dear catwink,
    I am so glad you answered me as any kind of encouragement helps! I started feeling a bit sick from the radiation right after i wrote that post, and it affects my mind as well as mybody. Makes sense, as the body includes my head! I got myself under controlthough. As far as what you said, i found that repeating the words"give up trying to figure cancer out" has helped me a lot when i start to panic. I guess it is another way of stopping. I believe in behavioral therapy and i am doing it to save my sanity.
  • allmost60
    allmost60 Member Posts: 3,178
    Violinist
    Hi,
    I'm glad you have resumed with your normal activities since finishing your radiation. From everything I have read, your cancer situation(age,grade,type and stage)puts you in a very favorable cure catagory.Close followup and periodic scans will definetely keep you ahead of the game in catching anything that may, or may not occur later down the road. Cancer of any kind is scary and what you are feeling is perfectly normal. If you just finished radiation in July, it may take a few more months of healing before you feel completely better or at least close to your old normal. Eat healthy, exercise, and try to stay as positive as possible in your daily thoughts. This is a wonderful group to share your cancer experience with. We may not always have the perfect answer, but we all know the scary process cancer puts us through, and can relate 100% with the fears and worries that come with it. Best wishes and hope to hear from you as you continue your healing. Love...Sue
    (age 60-Follicular NHL-stage3-typeA-grade2-diagnosed June 2010)
  • bluerose
    bluerose Member Posts: 1,104
    You are going through stages of grief and loss of your health
    I am a 25 year NHL survivor and my doctors have used the word cured more than once so take heart. I did have one recurrance about a year and a bit after the first diagnosis and had a bone marrow transplant then and since then I have been deemed cured. So it is possible, totally, and that's not just me either.

    Fear that grips you, especially in the middle of the night when it's dark and anyone feels alone most then, is also pretty common especially at your stage of treatment too. You have been hit with your own mortality and that's not an easy thing for anyone to take so don't beat yourself up for feeling that way and you certainly not look at yourself as a whiner or someone who feels they are dwelling on themselves. It is your time to take care of you and what has happened IS traumatic so give your body and mind a chance to deal with it all and heal. Cancer treatment is harsh on the body and I know plenty of people who got sick from their first chemo, everyone is different.

    That idea of 'get on with it' ticks off many survivors including me. However it usually comes from people who don't really know what to say to you (uncomfortable with the word cancer and someone they know who has it or had it) plus they are probably just trying to be encouraging in their own way. We can't 'get on with it'. There are fears left over and sometimes side effects like fatigue and pain and these are things we aren't used to. It's like waking up one day and having the body and mind of someone else.

    You have done a good thing for yourself in coming to this site. You will find many survivors here who know what you are talking about because we have all been there and so you will find much needed validation and support here from those who know.

    If you find yourself stuck in one of the stages of grief and loss that we all have to go through, like anger or 'why me' or any of the other stages you might consider chatting with a good grief counsellor who deals with cancer survivors, they can pull you through whatever stage you might be stuck in. Also watch for depression. Talk with your family doctor and make sure that any new symptoms you might have psychologically are well monitored. Depression can be cured for sure/managed so no use letting something you can do something about go untreated - if you encounter that that is.

    You know you were talking about your own mortality in a few ways in this posting and the bottomline is that - who really knows how long they have, diagnosis of cancer or not? Getting a diagnosis makes us realize that this life isn't forever even for us and that's a shocker. I will tell you a little story. When I was diagnosed I went upstairs that night and closed the door with my personal phone book and started to call all my friends and family across the country. My bad news was met with all kinds of words of comfort and uncomfortablness but one thing stood out to me, then and now. There was usually a tone to most of the calls and that tone was 'wow, she is outta here'. The tone was that obviously, to them, it was only a matter of time. I didn't buy that tone for some reason. That was 25 years ago. Today, half of those people are gone. Some of them who at the time of the first call had no health issues have passed away and here I am - still here. Bottomline, no one ever knows when their time is up, the only difference between those who are seemingly well right now and those who aren't is that one knows something is definitely wrong and the other doesn't know for sure. I call it the loss of innocence in the area of mortality.

    You sound like you are young and healthy in every other way and I am sure you will be able to fight it. Watch for any new symptoms you might encounter and make sure you get them checked out if they do but mostly just try to keep yourself busy with things other than cancer if you can at all. You will be tired more easily I would imagin, so take your body's cue and rest. Seek help if you need it, most of us check in with a counsellor now and again to settle issues that might have cropped up again or new ones that come out of the blue. It's smart to take care of things before they get out of hand.

    All the best, keep writing and take heart. Cancer can indeed be cured. I am here to tell you that through experience.

    Blessings,

    Bluerose
  • violinist1
    violinist1 Member Posts: 33
    bluerose said:

    You are going through stages of grief and loss of your health
    I am a 25 year NHL survivor and my doctors have used the word cured more than once so take heart. I did have one recurrance about a year and a bit after the first diagnosis and had a bone marrow transplant then and since then I have been deemed cured. So it is possible, totally, and that's not just me either.

    Fear that grips you, especially in the middle of the night when it's dark and anyone feels alone most then, is also pretty common especially at your stage of treatment too. You have been hit with your own mortality and that's not an easy thing for anyone to take so don't beat yourself up for feeling that way and you certainly not look at yourself as a whiner or someone who feels they are dwelling on themselves. It is your time to take care of you and what has happened IS traumatic so give your body and mind a chance to deal with it all and heal. Cancer treatment is harsh on the body and I know plenty of people who got sick from their first chemo, everyone is different.

    That idea of 'get on with it' ticks off many survivors including me. However it usually comes from people who don't really know what to say to you (uncomfortable with the word cancer and someone they know who has it or had it) plus they are probably just trying to be encouraging in their own way. We can't 'get on with it'. There are fears left over and sometimes side effects like fatigue and pain and these are things we aren't used to. It's like waking up one day and having the body and mind of someone else.

    You have done a good thing for yourself in coming to this site. You will find many survivors here who know what you are talking about because we have all been there and so you will find much needed validation and support here from those who know.

    If you find yourself stuck in one of the stages of grief and loss that we all have to go through, like anger or 'why me' or any of the other stages you might consider chatting with a good grief counsellor who deals with cancer survivors, they can pull you through whatever stage you might be stuck in. Also watch for depression. Talk with your family doctor and make sure that any new symptoms you might have psychologically are well monitored. Depression can be cured for sure/managed so no use letting something you can do something about go untreated - if you encounter that that is.

    You know you were talking about your own mortality in a few ways in this posting and the bottomline is that - who really knows how long they have, diagnosis of cancer or not? Getting a diagnosis makes us realize that this life isn't forever even for us and that's a shocker. I will tell you a little story. When I was diagnosed I went upstairs that night and closed the door with my personal phone book and started to call all my friends and family across the country. My bad news was met with all kinds of words of comfort and uncomfortablness but one thing stood out to me, then and now. There was usually a tone to most of the calls and that tone was 'wow, she is outta here'. The tone was that obviously, to them, it was only a matter of time. I didn't buy that tone for some reason. That was 25 years ago. Today, half of those people are gone. Some of them who at the time of the first call had no health issues have passed away and here I am - still here. Bottomline, no one ever knows when their time is up, the only difference between those who are seemingly well right now and those who aren't is that one knows something is definitely wrong and the other doesn't know for sure. I call it the loss of innocence in the area of mortality.

    You sound like you are young and healthy in every other way and I am sure you will be able to fight it. Watch for any new symptoms you might encounter and make sure you get them checked out if they do but mostly just try to keep yourself busy with things other than cancer if you can at all. You will be tired more easily I would imagin, so take your body's cue and rest. Seek help if you need it, most of us check in with a counsellor now and again to settle issues that might have cropped up again or new ones that come out of the blue. It's smart to take care of things before they get out of hand.

    All the best, keep writing and take heart. Cancer can indeed be cured. I am here to tell you that through experience.

    Blessings,

    Bluerose

    Dear Bluerose,
    I am very touched by your kindness. Need time to think over your words. Thank you so much
  • bluerose
    bluerose Member Posts: 1,104

    Dear Bluerose,
    I am very touched by your kindness. Need time to think over your words. Thank you so much

    Anytime
    You will find many people who will offer up words of encouragement and support on this site.

    Blessings,

    Bluerose