transitition from cancer patient to survivor, and living with side effects

So many reasons to be thankful, which I am but yet...

I am a Stage 1, invasive breast cancer survivor, two years out from surgery, chemo and radiation.  Some side effects aren't going to disappear, sore, sensitve tongue, neuropathy in both feet, and small amount in right hand,  two years into taking the oral anti estrogen medications.  So many reasons to celebrate each day, yet feel that cancer is lurking just over my shoulder and going to strike again at any minute.  I have two very nice wigs, which I really should donate, yet can't even get myself to open the drawer where they are stashed.  Guess, I just feel like I can't let my 'guard down' for even a minute. 

I have tried my local support group, just didn't feel like a fit.  At my medical teams suggestion trying this, perhaps one of you has shared the same feelings?  And can offer some better suggestions than, but, you don't have cancer now.

Cricket64

 

 

Comments

  • ladyg
    ladyg Member Posts: 1,577
    Hi Cricket

    We all have our own ways to deal with the beast. I myself am a 3 yr. survivor and I still feel like it may strike again at any moment. I have had a few other medical issues since then and each time I was afraid to go to a doctor because they would tell me it was back. But so far so good. As for the wigs, you will know when and if the time is right for you to pass them along to another survivor.

    Hugs,

    Georgia

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    ladyg said:

    Hi Cricket

    We all have our own ways to deal with the beast. I myself am a 3 yr. survivor and I still feel like it may strike again at any moment. I have had a few other medical issues since then and each time I was afraid to go to a doctor because they would tell me it was back. But so far so good. As for the wigs, you will know when and if the time is right for you to pass them along to another survivor.

    Hugs,

    Georgia

    Welcome

    I think you came to the right place, Cricket.  I, too, am a Stage 1 survivor, almost 3 years now.  It took me at least 2 years to sort of relax a bit, but I still worry, especially around appointment time.  And everything new that goes on with me physically, makes me wonder.  Thank God I feel really really good 99% of the time.  I understand about hanging on to your wigs.  My friend is a 10-year survivor and she keeps hers on hand for insurance against a recurrence.  I gifted some hats and scarves (I didn't have a wig) and then most of my hair never returned and I wish I had them back.  Bad karma getting rid of things before their time!  Now I wear a wig!!

    We "get it", Cricket.  Most friends who have not had cancer really don't.  You will see many of us posting about our concerns that if we told some of our friends about, we would be told to get on with our lives and put anything cancer behind us.  I learned (and now accept) that our friends do get tired of hearing about it and I finally figured out that this is the place to come when I need that shoulder or cyber hug to get me over whatever I'm facing.  It's sort of like a bookclub.  If you don't read, you have no interest in whatever book is being discussed and you'd rather talk about something else.  You get tired of hearing about it.

    Welcome!

    Suzanne

  • fauxma
    fauxma Member Posts: 3,577 Member

    Welcome

    I think you came to the right place, Cricket.  I, too, am a Stage 1 survivor, almost 3 years now.  It took me at least 2 years to sort of relax a bit, but I still worry, especially around appointment time.  And everything new that goes on with me physically, makes me wonder.  Thank God I feel really really good 99% of the time.  I understand about hanging on to your wigs.  My friend is a 10-year survivor and she keeps hers on hand for insurance against a recurrence.  I gifted some hats and scarves (I didn't have a wig) and then most of my hair never returned and I wish I had them back.  Bad karma getting rid of things before their time!  Now I wear a wig!!

    We "get it", Cricket.  Most friends who have not had cancer really don't.  You will see many of us posting about our concerns that if we told some of our friends about, we would be told to get on with our lives and put anything cancer behind us.  I learned (and now accept) that our friends do get tired of hearing about it and I finally figured out that this is the place to come when I need that shoulder or cyber hug to get me over whatever I'm facing.  It's sort of like a bookclub.  If you don't read, you have no interest in whatever book is being discussed and you'd rather talk about something else.  You get tired of hearing about it.

    Welcome!

    Suzanne

    Cricket,
    I like Suzanne's

    Cricket,

    I like Suzanne's analogy about cancer and a book club.  It's not that some people no longer care we have/had cancer but they didn't read the book.

    As for cancer lurking over your shoulder, those feelings vary among us.  No one way to feel is right or wrong.  We just have to cope with how we feel.  If it becomes overwhelming then we probably need to address the concern with our doctors.  It is never good for anyone to let something rule their lives.  But what you seem to be experiencing seems very normal.  You are not really that far out from your treatments and you have several issues that you are still actively dealing with.  They are physical reminders of your cancer.  It's like putting something on a shelf that's a little too small, it keeps fallilng off.  With time the shelf should get larger and you will be picking it up less.   It helped me to move on by not letting my worries about tomorrow rob me of today.  Someone here once said Yesterday is history, tomorrow is a mystery, enjoy today.  Not always easy but a good philosophy for me.    As far as the wigs, I can relate but not wig wise.  Mine is wardrobe related.  My weight has always flucuated.  Every time I would lose weight I would keep my "fat" clothes and it always seemed as soon as I got rid of them my weight went back on.  It actually went back on gradually but it seemed like a curse.  For good or bad, my weight is up and has been for years. I am okay with it but should I ever see 120 pounds again I am keeping my "fat" clothes as insurance.  So keep the wigs.  Think of them as your comfy blankie.  My sister kept hers cause they give her a sense of security. 

    Know that this site is a wonderful haven where you can ask questions, vent, rant, celebrate and share your knowledge.  Giving to others can really help you to deal with your own situation.  We have had some sisters who give love, support and advise while battling through stage IV, some right until they lost their fights.  Sad, yes, but also such an inspiration of their spirits and strength. 

    I hope that you find a place among us.   We hate that you need to be here but we welcome you as a sister.

    Stef

  • Cricket64
    Cricket64 Member Posts: 63
    I can already understand why 

    I can already understand why  it was suggested that I join this web site, your responses make so much sense to me.  THANK EACH OF YOU!  The analogy about if haven't read the book, you can't really understand it, especially resonated.

    So, I'll keep the wigs until I decide to let them go, and know where to reach of help from survirors.

    And, yes, having had cancer makes you almost paranoid about other health issues.  And so often, the have you had cancer issue raises its head.  For instances, I have back 'issues', just last week, instead of just doing a bone scan of my spine/back, no because you've had cancer you need a total body scan.  So now, as I wait to see if there is a way to ease the back pain, you know it, the fear, is there cancer there lurks also.

    Suggestions for dealing with nurathopy?

     

  • coco2008
    coco2008 Member Posts: 418
    Cricket64 said:

    I can already understand why 

    I can already understand why  it was suggested that I join this web site, your responses make so much sense to me.  THANK EACH OF YOU!  The analogy about if haven't read the book, you can't really understand it, especially resonated.

    So, I'll keep the wigs until I decide to let them go, and know where to reach of help from survirors.

    And, yes, having had cancer makes you almost paranoid about other health issues.  And so often, the have you had cancer issue raises its head.  For instances, I have back 'issues', just last week, instead of just doing a bone scan of my spine/back, no because you've had cancer you need a total body scan.  So now, as I wait to see if there is a way to ease the back pain, you know it, the fear, is there cancer there lurks also.

    Suggestions for dealing with nurathopy?

     

    I'm having problems with

    I'm having problems with neuropathy, too.  I have an appointment with a neurologist this Thursday.  I'll share on site what I learned.

    I just finished chemo on 8/15 so I'm not far enough along to get rid of anything.  But I can completely understand you concerns for the future.  I had a DCIS on one side and Stage 1 Invasive Ductal Carcinoma on the other. After chemo I decided to pass on rads and will be going in for a double mastectomy with reconstruction the end of this month.  I know this won't be an absolute guarantee that cancer won't return, but I feel there are fewer side effects than rads so I feel safer.

    We all react differently to various stages in this journey.  At each crossroads we have to chose when and what to do that is best for ourselves.  After all, no one is walking in our shoes but ourselves.

    Remember we are here for you and look forward to hearing how you are doing; good or bad or angry or laughing.  We care.

    Sandy

  • coco2008
    coco2008 Member Posts: 418
    Saw neurologist re neuropathy

    Saw neurologist re neuropathy today.  She said my symptoms are now mild so no meds.  To help slow or possibly prevent worstening symptoms she said to take OTC B-6 25 mg once a day, B-12 500 mcg once a day, and alpha lipoic acid 200-400 mg once a day.

    You might want to check with your onco to see if these would help you.

    Sandy

  • Cricket64
    Cricket64 Member Posts: 63
    coco2008 said:

    Saw neurologist re neuropathy

    Saw neurologist re neuropathy today.  She said my symptoms are now mild so no meds.  To help slow or possibly prevent worstening symptoms she said to take OTC B-6 25 mg once a day, B-12 500 mcg once a day, and alpha lipoic acid 200-400 mg once a day.

    You might want to check with your onco to see if these would help you.

    Sandy

    Sandy, thanks for the

    Sandy, thanks for the suggestions for neuropathy, I will pass them by my onco, and see what he says

     

  • kamcat1962
    kamcat1962 Member Posts: 40
    How does a survivor survive?

    All Sisters, we all know that this is almost as hard as going through your cancer treatments. For the disease we have surgery, chemo, radiation, etc.  But  how do you survive cancer in your mind and soul?  I am on my 2nd time around so my eyes have gotten a little more open as to how we are as patients just treated for the disease that lives in our body. As you said "what about the one that lurks in the back of your mind?" Unfortunately I let myself get so anxious about disease reoccurrence that I had to seek professional psychological help.  I didn't know about all the resources that existed for cancer survivors and their caregivers because they were not presented to me.  I feel this is the responsibility of the cancer center or oncology department that you seek treatment at. They need to have these resources readily available and in place. The surgeon has the tools to cut the disease from your body.  Make them give us the tools to rid it of our peace of mind.

    That is not the case where I live. We don't even have a American Cancer Society representative where I live.  They don't even have a support group for any type of cancer available.  If you have resources available don't shut the door too tightly the first time around.  Find another group or start one of your own.  That is what I am starting, however it will be a group for all survivors.  I don't care what word or type there is before "cancer" we all have a disease that can kill us and we need to stand strongly together for all of us to be cured!

    I hope you find the peace of mind you need but you must seek it out.  I know this is difficult and  i humbly admit I didn't do very well myself initially, but i intend to this time.

    This board is a great tool to get to know people and to learn about concerns, treatments and just to get support and love.  There are other one out there too.

    Take care and Bless you in your quest you will make it!!!

    Cathy K.

  • Cricket64
    Cricket64 Member Posts: 63

    How does a survivor survive?

    All Sisters, we all know that this is almost as hard as going through your cancer treatments. For the disease we have surgery, chemo, radiation, etc.  But  how do you survive cancer in your mind and soul?  I am on my 2nd time around so my eyes have gotten a little more open as to how we are as patients just treated for the disease that lives in our body. As you said "what about the one that lurks in the back of your mind?" Unfortunately I let myself get so anxious about disease reoccurrence that I had to seek professional psychological help.  I didn't know about all the resources that existed for cancer survivors and their caregivers because they were not presented to me.  I feel this is the responsibility of the cancer center or oncology department that you seek treatment at. They need to have these resources readily available and in place. The surgeon has the tools to cut the disease from your body.  Make them give us the tools to rid it of our peace of mind.

    That is not the case where I live. We don't even have a American Cancer Society representative where I live.  They don't even have a support group for any type of cancer available.  If you have resources available don't shut the door too tightly the first time around.  Find another group or start one of your own.  That is what I am starting, however it will be a group for all survivors.  I don't care what word or type there is before "cancer" we all have a disease that can kill us and we need to stand strongly together for all of us to be cured!

    I hope you find the peace of mind you need but you must seek it out.  I know this is difficult and  i humbly admit I didn't do very well myself initially, but i intend to this time.

    This board is a great tool to get to know people and to learn about concerns, treatments and just to get support and love.  There are other one out there too.

    Take care and Bless you in your quest you will make it!!!

    Cathy K.

    Cathy...thanks for your kind words

    Kathy,

    It is a journey and a struggle, but am definately working on finding not only physical, but mental healing as well.  Since I last posted, I have had a phone consultation with a social worker, associatd with the cancer center where I was treated, she had some useful suggestions, one as simple as seeing my GP to see if there really is anything else 'cooking'.  Appointment has been made.  I am also invistigating using mental imagery, again, phone consultation with specialest from 'my' cancer center.  I am very greatful to have been treated there, and that although in two weeks, I will be two years out from last treatments, they are always willing to answer my questions and offer support.  I will figure this out....but am also learning that I am not alone in have some of these feelings....