Hello

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mrupe
mrupe Member Posts: 5

 

Found this forum a few days ago. Thanks for all the great information.

 

Me, My name is Mark. 50 years old. The doctors found 11cm RCC tumor on My right Kidney in Jan 2015. Removed same month. Recovered great and feeling good. No meds, as of yet.

 

Surrounding tissue and lymph nodes where clear but did have what they call Nodules on my Liver and Lungs. Since then, the one on my Liver has been considered to be a cyst. Of the 3 original on my lungs, the largest one has stayed at 9mm, the other 2 have showed up as one or have changed sizes slightly. Last scan they went from 2 approx 3-4mm nodules to 1 6mm nodule. Doc says it’s just because they are so small the cscan see them differently from scan to scan. Bone scan was negative. No brain scan, yet.

 

The biggest thing I face now is the anxiety of waiting on these every 3 month scans. I can’t concentrate at work...Can’t sleep at night…Irritable around my family…Just all around in a down mood. In the past when I have received the good news, while I feel relieved, I know there is another coming in 3 months…

 

 

How do y’all cope?

 

 

Thanks

 

 

Mark

 

Comments

  • APny
    APny Member Posts: 1,995 Member
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    I'm so sorry you have to be

    I'm so sorry you have to be here. The anxiety, or as we call it, scanxiety, is just awful. I think we can pretty much all agree that the waiting for results is nerve wrecking and I also find it difficult to focus on other things though I force myself. It's really good news that your bone scans are negative and hopefully the lung nodules will remain stable. All the best to you!

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    APny said:

    I'm so sorry you have to be

    I'm so sorry you have to be here. The anxiety, or as we call it, scanxiety, is just awful. I think we can pretty much all agree that the waiting for results is nerve wrecking and I also find it difficult to focus on other things though I force myself. It's really good news that your bone scans are negative and hopefully the lung nodules will remain stable. All the best to you!

    Coping

    Work hard - I'm a teacher. I plan lessons find resources etc. Enjoy many a glass of wine. works most of the time

  • Allochka
    Allochka Member Posts: 1,062 Member
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    Coping

    Work hard - I'm a teacher. I plan lessons find resources etc. Enjoy many a glass of wine. works most of the time

    I wish I had the way to

    I wish I had the way to cope... It is my beloved partner who had kidney cancer not me, but it is me who gets terrible scanxiety in our family. I go crazy about every scan, about every little pain he has...

    I can give you no good advise, but I can say I understand how you feel. And after all - we all have scanxiety, but we still here, still living life, still enduring this stress somehow. 

    The only thing which helps me a bit is to shut away all thoughts about scans until they come really close. So if scans are a month away - I forbid myself to think about them. When a week away - ok, I allow a full blown anxiety. Thus I try to limit it time-wise a bit.

    wish you to stay NED for a long time!

  • PK_Chicago
    PK_Chicago Member Posts: 58
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    Coping...

    I found that this best way to cope is to live your life in increments - to the next scan, to the next appointment, etc.  You can't think about things by what "might" happen.  You need to look at small steps - IT'S NOT EASY!!!  There is not a whole lot you can do about what is coming - but if it controls you - yoo are sunk.  ATTITUDE is everything!!!

     

    Good luck!

     

    PK

  • Jan4you
    Jan4you Member Posts: 1,330 Member
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    Coping...

    I found that this best way to cope is to live your life in increments - to the next scan, to the next appointment, etc.  You can't think about things by what "might" happen.  You need to look at small steps - IT'S NOT EASY!!!  There is not a whole lot you can do about what is coming - but if it controls you - yoo are sunk.  ATTITUDE is everything!!!

     

    Good luck!

     

    PK

    First of all, Mark, I can

    First of all, Mark, I can appreciate what you are going through so sorry for your anxiety.

    Now I would ask yourself how well do you want to learn how to handle your fears/anxiety? There are ways so you don't have to suffer or take it out on your family. And do not forget to let your family know you are sorry for taking it out on them if you are ok?

    Not sure if you feel you are spiritual or even a religious person. The other way to look at this is similar to AA: take it one day at a time or as I say, one moment at a time.

    Ask yourself, is there anything I need to do today to take good care of myself, my responsibilites, my family? Do what you can and let the rest go..again.. moment to moment, till you get a better handle on this. Often exercise is a good way to rid yourself of angst and anxiety. I like to sing! I am a great singer in my car. LOL

    Next, ask yourself, what does worrying get me? Anything? No, you only use up much needed energy and serenity.

    Which takes me to a prayer I find helps me and others. Even if you are not a believer, this prayer helps:

    (God) Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Again, you repeat this over and over until you feel a serenity start to replace your anxiety.

    Then there is this method of simply being aware of your breathing. Breathe IN through your nose deeply, then let it out s l o w l y, through slightly open lips, with your teeth apart, as if you were about to just make a candle flicker, ever so slowly. Close your eyes and mentally go somewhere in your mind that brings you serenity, joy, a pleasant, happy place.

    Keep doing this breathing until you start to feel more calm. It works. AND you can use this breathing ANY time you are about to  have something intrusive done to you, like getting a shot, or a procedure which frightens you or could be painful. Trust me it works! It can actually block pain~hence its called "labor breathing"

    Too much? I am sorry.

    In the meantime, I am sending you kind and empathic thoughts ...

    Gentle hugs, Jan

  • Dembel
    Dembel Member Posts: 32
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    Optimism

    Hi Mark,

    I'm just a caregiver as well and it is my husband struggling. What I see works for him is to  minimalise and joke about it. Maybe that's just his character, but still....I know he worries, he sleeps more restlessly before the check-ups, and keeps me awake without knowing so. But he makes jokes about it, laughs when people are to shy to speak about this terrible disease that cancer is, and as others have said.....keep busy and drink a glass of wine now and then! I think there is no perfect solution fo coping with the days before the scan......

    For me personally it helps to know exactly what stage, grade etc it is and was.....he has stade 3 and grade 2, so I just keep thinking, that stade 4 would be worse, and grade 3-4 would be worse..... I refuse to think that grade 1, and no spread to fat tissue and blood vessels would have been better.....but it's definitely not always easy.

    What my partner always says when people compliment him for being so optimistic is that whether he will live for another 6 months or 30 years, it will anyway be more pleasant for himself and his loved ones, if he's optimistic. Now my hat of for that attitude, I don't think I could think that way, but keeping busy, and with a little help from a glass of wine, I'm sure you can do it as well!

    all the best,

    Demi

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
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    I think my husband is

    I think my husband is unusual.  He has anxiety while the scans are being done, then he forgets about it.  Even forgets about the appt a week later.  On that day, waiting for results he is worried.  As the wife, i think i worry enough for both of us.  My husband says he stays so busy that he has no time to think about IT.  He thinks thats the way to deal with it.  Im not so sure.  I do know, for most people here, it gets better with time.  Coping skills seem to get better.

  • foxhd
    foxhd Member Posts: 3,181 Member
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    a_oaklee said:

    I think my husband is

    I think my husband is unusual.  He has anxiety while the scans are being done, then he forgets about it.  Even forgets about the appt a week later.  On that day, waiting for results he is worried.  As the wife, i think i worry enough for both of us.  My husband says he stays so busy that he has no time to think about IT.  He thinks thats the way to deal with it.  Im not so sure.  I do know, for most people here, it gets better with time.  Coping skills seem to get better.

    coping

    I may also be a bit unusual. 35 or so years in health care give me a different perspective on death and dieing. I know we all die. Some too young, many too old. Some suffer, some don't. first of all, I'm not ready to go. I have things to do. That keeps my mind on things I'm interested in. The first year after diagnosis is tough. But I lived through it. So at this point every day is a gift. I really don't forget it. Especially after this past winter. I often feel like I won a lottery. I know the good run is getting shorter but damn, I've been so lucky. I have short term goals but no 5 year plan. I live in the present. I also work very hard to maintain a positive attitude as I regularly mention that time spent worrying or depressed is never recoverable. I spin bad news and episodes into something good. Then very importantly, I spend a lot of time here on this site recieving and sharing support with all of you. My wife is special and manages the bills, shopping, and most other household responsibilities. Leaving me the opportunity enjoy every minute possible. One more concept is that I am not a religious sort. I don't believe in an after life or heaven. When it is over it is over. So I'm in no hurry to die. That motivates me to work hard and enjoy every minute I can get.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    Dembel said:

    Optimism

    Hi Mark,

    I'm just a caregiver as well and it is my husband struggling. What I see works for him is to  minimalise and joke about it. Maybe that's just his character, but still....I know he worries, he sleeps more restlessly before the check-ups, and keeps me awake without knowing so. But he makes jokes about it, laughs when people are to shy to speak about this terrible disease that cancer is, and as others have said.....keep busy and drink a glass of wine now and then! I think there is no perfect solution fo coping with the days before the scan......

    For me personally it helps to know exactly what stage, grade etc it is and was.....he has stade 3 and grade 2, so I just keep thinking, that stade 4 would be worse, and grade 3-4 would be worse..... I refuse to think that grade 1, and no spread to fat tissue and blood vessels would have been better.....but it's definitely not always easy.

    What my partner always says when people compliment him for being so optimistic is that whether he will live for another 6 months or 30 years, it will anyway be more pleasant for himself and his loved ones, if he's optimistic. Now my hat of for that attitude, I don't think I could think that way, but keeping busy, and with a little help from a glass of wine, I'm sure you can do it as well!

    all the best,

    Demi

     

    Dont underestimate what you do

    "Just" a care giver? Just one of those people who keep us alive!

    I also tend to split everything into its smallest componenent, which I tend to find interesting rather than anything.

    I dont know how to explain this, I let things touch me, they have to, but lightly.

    If its good, its a little bit good

    If its bad, its a little bit bad and,whoops!, heres tomorrow with its own basket of........tomorrow, I guess.