Increased anxiety

It's so odd but now that my husband is nearing treatment my anxiety level is at an all time high. The dr scheduled his first post treatment head/neck ct in January and since then I am more anxious and emotional then ever. I guess it's the realization that nothing, not even all this treatment including surgeries x 2, radiation and chemo, are guaranteed. Of course I know that in my brain but for some reason the new reality of life has me so upset. It sure makes sleeping difficult.

All of you survivors and caregivers are so amazingly brave. I realize it now more than ever.

After tomorrow we have 3 radiations and one chemo left

God be with us all.

Joan

Comments

  • Billie67
    Billie67 Member Posts: 898
    Oh Joan
    I'm sorry for the stress you are feeling. I'm going to be honest with you, most of us can totally relate! There are some lucky ones out there who never had the stress or at least claim they didn't have it. I know that even tho I had a good positive fighting attitude I still had my moments of being scared and I kept thinking "what if". I'm now 21 weeks post treatment and I had a good PET/CT yet still there is that nagging little voice in the back of my mind that will sometimes act up. I think you caregivers have even more worry than we patients have. I think it probably comes from feeling helpless.
    I ended up getting a bit of relief from taking a mild anti depressant. I fought it for a while, I kept telling myself to suck it up and deal with it. My RNs and primary care dr finally convinced me that the stress was not good for me. Maybe you would benefit from speaking to your dr about what you're going thru.
    I will pray for you to find peace.
    Billie
  • Billie67
    Billie67 Member Posts: 898
    Billie67 said:

    Oh Joan
    I'm sorry for the stress you are feeling. I'm going to be honest with you, most of us can totally relate! There are some lucky ones out there who never had the stress or at least claim they didn't have it. I know that even tho I had a good positive fighting attitude I still had my moments of being scared and I kept thinking "what if". I'm now 21 weeks post treatment and I had a good PET/CT yet still there is that nagging little voice in the back of my mind that will sometimes act up. I think you caregivers have even more worry than we patients have. I think it probably comes from feeling helpless.
    I ended up getting a bit of relief from taking a mild anti depressant. I fought it for a while, I kept telling myself to suck it up and deal with it. My RNs and primary care dr finally convinced me that the stress was not good for me. Maybe you would benefit from speaking to your dr about what you're going thru.
    I will pray for you to find peace.
    Billie

    I forgot
    To mention that this treatment is brutal but in so many cases very successful! Hopefully that will give you a little peace of mind :-)
    Billie
  • phrannie51
    phrannie51 Member Posts: 4,716
    Not so brave here....
    I have times everyday that I get a case of the "what-if's"...and if I would allow it, I'm sure I could become obsessed with them...My first after treatment PET scan is coming in a little over a week, and everytime I think about it looming, I get a stomach ache. I want a NED SO bad, that anything less feels like it will put me over the edge.

    Part of it maybe that the activily "fighting the disease" will be over, and then it's back to the wait mode...wait for the scan, wait for the Dr.'s opinion, and the wait for the next scan...it's hard.

    Think about takng Billie's advice if you're not already taking anything for stress...if you are, it may be time for a change. You have to eat and get your sleep too...your job is WAY harder than being the patient...at least emotionally.

    p
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    do not borrow trouble
    Hi Joan,

    I think most of us get scanxitey and those that don’t have good drugs. My mind use to race at night on occasion during treatments, on those nights I would take 1 Lorazapam and boom lights out. Sleep has always been my refuge from the whole cancer mess.

    Remember one day at a time, you still have some treatments to go through. You need to believe the treatments are working and the scans are just to confirm that. Relax, relax, relax, everything is going to work out fine.

    Best,

    Matt
  • Pam M
    Pam M Member Posts: 2,196
    Breathe
    I think most all of us go through this. You're just so busy fighting, and going to multiple appointments every week, and lining out your schedules and lists. Then all of a sudden - you're not. If you're like I was, you're antsy about whether it's "safe" to stop his treatment soon. I felt like as long as I was doing chemo rads, I was beating down the cancer, even if it wasn't completely gone yet. No longer busy with the fighting activities of chemo, rads and lots of docs, you're down to wondering why you're not healing faster, and wandering in a different sort of twilight zone. Once you're in it, it's odd to feel like you're coasting. For me, like many, "scanxiety" would hit before scan time. I'd be very calm the day of scans only because I was so wired beforehand that I couldn't sleep, and I'd be so exhausted when I showed up for the tests that I was on auto-pilot.

    Brave?? Depends on the day - sometimes the moment.
  • katenorwood
    katenorwood Member Posts: 1,912
    anxiety
    Hello Joan,
    You are not alone in this ! I was a caregiver for my Mom for a long time. So when I tell my husband (my caregiver) to get himself out...I need some alone time...it's for him not me. Seeing someone you love so deeply going through any dx and all of the effects is a tough road to walk. These feelings don't make you weak, they make us who we are. I've now walked both walks...continuing it. Be strong, but know that it's o.k. to feel what you feel. Keep talking to others....and please know you're NEVER alone in this ! Take care of you ! I'll be thinking of you both in all of this Joan, we are here for all concerned ! Katie
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    caregiver anxiety
    Sure makes you a mess, doesn't it? Can't eat right, can't sleep right. Concentrating at work? Forget it!

    Getting sleep is critical to your health. The cumulative effects of poor sleep are well documented - memory issues are among the greatest and with all that is going on, you need your memory in good working order.

    Don't forget to take care of yourself with some daily walks, time behind a closed door, going to your own doctor's appointments.

    Scanxiety is not just a problem for the patient: sometimes the caregivers have it worse.
  • luvofmylif
    luvofmylif Member Posts: 344

    caregiver anxiety
    Sure makes you a mess, doesn't it? Can't eat right, can't sleep right. Concentrating at work? Forget it!

    Getting sleep is critical to your health. The cumulative effects of poor sleep are well documented - memory issues are among the greatest and with all that is going on, you need your memory in good working order.

    Don't forget to take care of yourself with some daily walks, time behind a closed door, going to your own doctor's appointments.

    Scanxiety is not just a problem for the patient: sometimes the caregivers have it worse.

    God bless you all.

    God bless you all.
  • VanessaSLO
    VanessaSLO Member Posts: 283

    God bless you all.

    God bless you all.

    Oh, great subject to talk about... caregiver anxiety!
    I am sooooo glad that we can talk about this because now, when my dad has finished his tx is much much much worse then it was during tx.
    He is now 2 months post tx, on Wednesday he has his first check-up (I think it won't be PET yet) and I am already soooo anxious and worried. He's been strugling with side effects, I think he has thrush, he gets really tired all day due to this pain in mouth... He sleeps a lot and can't even go for a long walk. It worries me even though my Mom takes it much easier - maybe because she doesn't know so much, she does not read internet, she knows almost nothing about stats, other patient stories... I think I know too much. On the one hand it's great to know all this, it's great to be a part of this forum and to learn so much about this cancer and it's great to have all of you here who helped me thru toughest times.
    But too much info can also be an enemy. Because now my head is filled with all of this. I know all about HPV, stats, survival rates, medicines, chemoteraphy drugs, radiation, side effects etc, recurreneces... Sometimes I feel like I'm doctor myself and diagnosing my Dad all the time in my head.
    Waiting for his check-up, desiring the word NED and living one day at a time is very hard.
    I don't know if we'll ever be normal again or I will just wait every month for the rest of his life when the cancer will return. And yet I still don't know if the treatment was successful after all!

    It scares me even more knowing that his cancer was on the base of his tongue and that it was called invasive and it spread to multiple lymph nodes (the biggest package of nodes was very big). And those lymph nodes were there for almost a year before he was diagnosed. So it scares me that all those facts put him into even worse statistics. He is a strong man, a cat with nine lives, but anyway... is this his last? I'm sorry for writing all these fears and spreading some negativity (maybe cold November weather helps a bit), but I just had to vent out a bit!
    No one could understand it more than all of you here on this board!
  • katenorwood
    katenorwood Member Posts: 1,912

    Oh, great subject to talk about... caregiver anxiety!
    I am sooooo glad that we can talk about this because now, when my dad has finished his tx is much much much worse then it was during tx.
    He is now 2 months post tx, on Wednesday he has his first check-up (I think it won't be PET yet) and I am already soooo anxious and worried. He's been strugling with side effects, I think he has thrush, he gets really tired all day due to this pain in mouth... He sleeps a lot and can't even go for a long walk. It worries me even though my Mom takes it much easier - maybe because she doesn't know so much, she does not read internet, she knows almost nothing about stats, other patient stories... I think I know too much. On the one hand it's great to know all this, it's great to be a part of this forum and to learn so much about this cancer and it's great to have all of you here who helped me thru toughest times.
    But too much info can also be an enemy. Because now my head is filled with all of this. I know all about HPV, stats, survival rates, medicines, chemoteraphy drugs, radiation, side effects etc, recurreneces... Sometimes I feel like I'm doctor myself and diagnosing my Dad all the time in my head.
    Waiting for his check-up, desiring the word NED and living one day at a time is very hard.
    I don't know if we'll ever be normal again or I will just wait every month for the rest of his life when the cancer will return. And yet I still don't know if the treatment was successful after all!

    It scares me even more knowing that his cancer was on the base of his tongue and that it was called invasive and it spread to multiple lymph nodes (the biggest package of nodes was very big). And those lymph nodes were there for almost a year before he was diagnosed. So it scares me that all those facts put him into even worse statistics. He is a strong man, a cat with nine lives, but anyway... is this his last? I'm sorry for writing all these fears and spreading some negativity (maybe cold November weather helps a bit), but I just had to vent out a bit!
    No one could understand it more than all of you here on this board!

    We're here for you !
    Vanessa,
    All the above advice is meant for you too ! your words of encouragement to all of us has meant so much to me. You are a wonderful support system for your parents ! Take care of you too, and please never ever think by venting here is taken wrong. You're very special ! Katie
  • cureitall66
    cureitall66 Member Posts: 913
    Not alone....
    We have 5 rads and 1 chemo left...what a ride it's been. I'm already seeing a shift to another seat on this bus. He's hitting some depression/scared feelings. He won't sleep with the lights off. It's kicking my anxiety into overdrive too. All we can do is try to remain calm and trust our inner self and have faith that they will come through this with fewer bumps along the way.

    Thinking of you...hang tight, and remember you are never alone. We're all on this journey together.

    God Bless us ALL!

    C~
  • Tim6003
    Tim6003 Member Posts: 1,514 Member

    Not alone....
    We have 5 rads and 1 chemo left...what a ride it's been. I'm already seeing a shift to another seat on this bus. He's hitting some depression/scared feelings. He won't sleep with the lights off. It's kicking my anxiety into overdrive too. All we can do is try to remain calm and trust our inner self and have faith that they will come through this with fewer bumps along the way.

    Thinking of you...hang tight, and remember you are never alone. We're all on this journey together.

    God Bless us ALL!

    C~

    It is hard...
    We are always "looking over our shoulder" but at the same time we are wanting to move on with our lives and never think of it again.

    You can view it as a gift (I do) or a curse. The gift is we now understand a deeper pain and suffering not just in our physical bodies but our minds and spirits as well. I would dare say there is not one person on here who does not appreciate life, their loved one, their children, spouse more than...than at any other time. I know there are exceptions to everything...but the way I see it now is this; I will do anything and everything in my power to help a fellow H&N warrior (probably any person with cancer) and I will ceratinly care not just about the individual but their caretakers, the ones they love and who love them, the children (good Lord, the children) ....so much stress,pain,worry, fear, so much courage and up and downs.

    I am a better person for having been through what I did. My wife and children too (and that's hard for me as a father to say bc I did not want my children to be afraid and worry over me the way they did...I wanted to protect them) ...but by golly I know they are stronger now for all we have been through. We are closer. We give those looks in church or at times of bad news and we immediately know what we are thinking ..we are thinking how can our family help this family....all without saying a word. My daughter and I do it the most now ...and I know what she is thinking...she is thiking when she hears bad news or the disclosure of bad news regarding a dx of a fmaily or individucal "Dad, what can we do" .....and she looks right at me with that look.

    Cancer may very well one day kills us ....but I am quickly learning how to use what I have beent through to help others. I will no give up I will not give in and I will continue to work with my doctors and I will continue to trust my God that He too cares and that I am learning something from all of this.

    :) Wow...went to far out on that soapbox did I not? But you get what I mean...and you bet I have days when I allow my mind to wander or think to far to the dark side ....and I just have to whisper my own prayer that says "Lord, you gotit the way you want it" ..."help me know when and where to fight" ....

    Best,

    Tim
  • luvofmylif
    luvofmylif Member Posts: 344
    Tim6003 said:

    It is hard...
    We are always "looking over our shoulder" but at the same time we are wanting to move on with our lives and never think of it again.

    You can view it as a gift (I do) or a curse. The gift is we now understand a deeper pain and suffering not just in our physical bodies but our minds and spirits as well. I would dare say there is not one person on here who does not appreciate life, their loved one, their children, spouse more than...than at any other time. I know there are exceptions to everything...but the way I see it now is this; I will do anything and everything in my power to help a fellow H&N warrior (probably any person with cancer) and I will ceratinly care not just about the individual but their caretakers, the ones they love and who love them, the children (good Lord, the children) ....so much stress,pain,worry, fear, so much courage and up and downs.

    I am a better person for having been through what I did. My wife and children too (and that's hard for me as a father to say bc I did not want my children to be afraid and worry over me the way they did...I wanted to protect them) ...but by golly I know they are stronger now for all we have been through. We are closer. We give those looks in church or at times of bad news and we immediately know what we are thinking ..we are thinking how can our family help this family....all without saying a word. My daughter and I do it the most now ...and I know what she is thinking...she is thiking when she hears bad news or the disclosure of bad news regarding a dx of a fmaily or individucal "Dad, what can we do" .....and she looks right at me with that look.

    Cancer may very well one day kills us ....but I am quickly learning how to use what I have beent through to help others. I will no give up I will not give in and I will continue to work with my doctors and I will continue to trust my God that He too cares and that I am learning something from all of this.

    :) Wow...went to far out on that soapbox did I not? But you get what I mean...and you bet I have days when I allow my mind to wander or think to far to the dark side ....and I just have to whisper my own prayer that says "Lord, you gotit the way you want it" ..."help me know when and where to fight" ....

    Best,

    Tim

    No, Tim you didn't go to far
    No, Tim you didn't go to far on a soapbox. Everything you say helps and I only am sorry that you, the cancer survivor, has to try to help me, the caretaker. It should be the other way around.

    I thank God we don't have young children. I know that thinking of your children going through this with you is so painful and scary.

    Please know that all you do on this site is helpful and inspiring. I will draw strength from your words and I thank you.

    Joan
  • luvofmylif
    luvofmylif Member Posts: 344
    Tim6003 said:

    It is hard...
    We are always "looking over our shoulder" but at the same time we are wanting to move on with our lives and never think of it again.

    You can view it as a gift (I do) or a curse. The gift is we now understand a deeper pain and suffering not just in our physical bodies but our minds and spirits as well. I would dare say there is not one person on here who does not appreciate life, their loved one, their children, spouse more than...than at any other time. I know there are exceptions to everything...but the way I see it now is this; I will do anything and everything in my power to help a fellow H&N warrior (probably any person with cancer) and I will ceratinly care not just about the individual but their caretakers, the ones they love and who love them, the children (good Lord, the children) ....so much stress,pain,worry, fear, so much courage and up and downs.

    I am a better person for having been through what I did. My wife and children too (and that's hard for me as a father to say bc I did not want my children to be afraid and worry over me the way they did...I wanted to protect them) ...but by golly I know they are stronger now for all we have been through. We are closer. We give those looks in church or at times of bad news and we immediately know what we are thinking ..we are thinking how can our family help this family....all without saying a word. My daughter and I do it the most now ...and I know what she is thinking...she is thiking when she hears bad news or the disclosure of bad news regarding a dx of a fmaily or individucal "Dad, what can we do" .....and she looks right at me with that look.

    Cancer may very well one day kills us ....but I am quickly learning how to use what I have beent through to help others. I will no give up I will not give in and I will continue to work with my doctors and I will continue to trust my God that He too cares and that I am learning something from all of this.

    :) Wow...went to far out on that soapbox did I not? But you get what I mean...and you bet I have days when I allow my mind to wander or think to far to the dark side ....and I just have to whisper my own prayer that says "Lord, you gotit the way you want it" ..."help me know when and where to fight" ....

    Best,

    Tim

    No, Tim you didn't go to far
    No, Tim you didn't go to far on a soapbox. Everything you say helps and I only am sorry that you, the cancer survivor, has to try to help me, the caretaker. It should be the other way around.

    I thank God we don't have young children. I know that thinking of your children going through this with you is so painful and scary.

    Please know that all you do on this site is helpful and inspiring. I will draw strength from your words and I thank you.

    Joan