Still healing, yet not,.

Mhamby
Mhamby Member Posts: 13
in Kidney Cancer #1
I had my right kidney removed soon after a tumor was accidentally found during a spinal MRI. I had just had surgery on my shoulder prior to all this. In the hospital I felt very brave and confident and it was genuine. Now that I'm at home covered in strips, I'm on a strange and lonely roller coaster. I have a supportive and large group of family/friends, but I don't have the words to tell them what I'm feeling. I stroke the incision site often, and I can't explain why. In my head I swing from being grateful for catching the cancer so early, yet feel like a cancer "faker" because I didn't need chemotherapy. I know about the stages of grief, and I'm sure all these hidden, sad, and confused thoughts are part of that. I'm really just posting here because I had to tell someone who has personal understanding. My life is the same, but different...I feel changed,slightly cut off. I just want someone to understand...almost when I can't understand myself.
Meg

Comments

  • jaker99
    jaker99 Member Posts: 1
    #2
    It's weird but it gets better
    Meg, my story is a lot like yours. My tumor was found incidentally on CT, and I had an open partial nephrectomy in January. No symptoms, no issues, just "You have cancer" followed very quickly by "You are cancer free - no chemo, no radiation needed." Often it feels like it was not real or like I have been pretending. I cannot wrap my head around the idea that I am a cancer survivor, since I never felt like I had cancer. I am guessing this feeling will fade (just like the scar) and I will return to normal. Hang in there. It's weird, but it does get better.
    JB
  • Sasa
    Sasa Member Posts: 10
    #3
    Hi.
    Me too! You put it so succinctly. You have expressed my feelings to a tee. My RCC was accidentally found during a CT Scan for Appendicitis on June 23, 2009; I had an open, partial nephrectomy to remove a tumor <2cm; the urological oconologist surgeon told my family and friends that I was now cancer free. Well, the trauma from the surgery; the pain endured after the surgery, and the lump still on my right side that swells occasionally, sure made me feel like I had cancer. And, I, too, only have to go through CT Scans w/oral and IV contrast every 4 months. "had just had surgery on my shoulder prior to all this. In the hospital I felt very brave and confident and it was genuine. Now that I'm at home covered in strips, I'm on a strange and lonely roller coaster. I have a supportive and large group of family/friends, but I don't have the words to tell them what I'm feeling. I stroke the incision site often, and I can't explain why. In my head I swing from being grateful for catching the cancer so early, yet feel like a cancer "faker" because I didn't need chemotherapy." I am glad that you have a strong family/friends support system. I do not. But, my small little family believes, and I should, that the surgeon got all of my cancer, and I have no worried. If this be the case, then, how come I have to go back every 4 months?
  • Mhamby
    Mhamby Member Posts: 13
    #4
    jaker99 said:

    It's weird but it gets better
    Meg, my story is a lot like yours. My tumor was found incidentally on CT, and I had an open partial nephrectomy in January. No symptoms, no issues, just "You have cancer" followed very quickly by "You are cancer free - no chemo, no radiation needed." Often it feels like it was not real or like I have been pretending. I cannot wrap my head around the idea that I am a cancer survivor, since I never felt like I had cancer. I am guessing this feeling will fade (just like the scar) and I will return to normal. Hang in there. It's weird, but it does get better.
    JB

    You nailed if
    When you say that it's hard to feel like a cancer survivor when you never really internalized that you had cancer in the first place - that is how i feel too! Thanks for your response. I am really trying to get back to normal and I'm holding on to the hope that maybe it will just take some time. Best wishes for your healing on this journey.
  • Mhamby
    Mhamby Member Posts: 13
    #5
    Sasa said:

    Hi.
    Me too! You put it so succinctly. You have expressed my feelings to a tee. My RCC was accidentally found during a CT Scan for Appendicitis on June 23, 2009; I had an open, partial nephrectomy to remove a tumor <2cm; the urological oconologist surgeon told my family and friends that I was now cancer free. Well, the trauma from the surgery; the pain endured after the surgery, and the lump still on my right side that swells occasionally, sure made me feel like I had cancer. And, I, too, only have to go through CT Scans w/oral and IV contrast every 4 months. "had just had surgery on my shoulder prior to all this. In the hospital I felt very brave and confident and it was genuine. Now that I'm at home covered in strips, I'm on a strange and lonely roller coaster. I have a supportive and large group of family/friends, but I don't have the words to tell them what I'm feeling. I stroke the incision site often, and I can't explain why. In my head I swing from being grateful for catching the cancer so early, yet feel like a cancer "faker" because I didn't need chemotherapy." I am glad that you have a strong family/friends support system. I do not. But, my small little family believes, and I should, that the surgeon got all of my cancer, and I have no worried. If this be the case, then, how come I have to go back every 4 months?</p>

    It's true!
    At my first post surgery appointment, I asked the doctor how long will I need to keep following up with him since he said he "got it all". His answer? "the rest of your life, well for the rest of my life anyway" (he is considerably older than I am so this was his idea of joking). Its almost like we are on the cusp of "real cancer"...its really hard to explain why it hurts, so I really appreciate your response. I got a referral today to see a counselor. I hope he or she understands the way people on this site seem to now that I've read more posts. Thanks!
  • lcsmithfam
    lcsmithfam Member Posts: 9
    #6
    ME TOO! I had my right
    ME TOO! I had my right kidney removed on August 31, 2010. I was diagnosed on July 20, so I only knew that I had cancer for 6 weeks. Due to over-active bladder issues, I went to a urologist who ordered a CT - bladded is OK, but you have kidney cancer. Believe me, this was the last thing I ever thought I would hear. It was devastating. I had WONDERFUL support from my family - my sister is a retired nurse and was with me at the diagnosis and through every scan, test and surgery. My husband is disabled, but did everything he could to support me. So surgery is over, and now I am left with nerve damage, which sometimes occurs with the open flank surgery. I will see a pain management specialist next week. However, I will not take narcotics, hopefully he can do a nerve block - i am on neurotin now which is helping.

    I fully understand what all of you mean when you say you feel like a "cancer faker" because we did not (thank God) have to have chemo or radiation following our surgery. Why were we the lucky ones to have had kidney cancer that was cured with removal of an organ that, oh, by the way we have another one, and don't have to endure the horrible side effects? But, we still did have cancer. It has been 6 months and it is as though I am just now dealing with the fact that I had cancer. I get very emotional when I talk to someone who has or knows someone who is undergoing treatment. I drive by the children's hospital every day and get very emotional thinking about those poor little guys who are fighting for their lives and don't even know why - and their parents - I just can't imagine.

    This is a wonderful web-stie for all of us to share our feelings and experiences. When I see that someone is newly diagnosed and scared and approaching the surgery, I feel like I can relate and perhaps provide a bit of comfort. Certainly some advice for post-surgery care. I had the best!!

    I try to be thankful in all things. Having cancer does change your life and gives you a new perspective on what is really important to you.

    You did have cancer no matter the size of the tumor and the after-care required. You endured a traumatic surgery and had part or all of your kidney removed. We are cancer survivors!! It is still very hard to grasp that, but we are also very lucky.

    Best of luck with your recovery. I hope to read your future posts!!
  • Sasa
    Sasa Member Posts: 10
    #7
    Mhamby said:

    It's true!
    At my first post surgery appointment, I asked the doctor how long will I need to keep following up with him since he said he "got it all". His answer? "the rest of your life, well for the rest of my life anyway" (he is considerably older than I am so this was his idea of joking). Its almost like we are on the cusp of "real cancer"...its really hard to explain why it hurts, so I really appreciate your response. I got a referral today to see a counselor. I hope he or she understands the way people on this site seem to now that I've read more posts. Thanks!

    Yes...
    My doctor said the same thing: I asked how long I would have to have these checkups, and he said for the "rest of your life."
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #8
    Meg
    This is so much to process right away, but we are so lucky to have caught the cancer early enough so that the surgery is basically the "only" treatment we will need. Give yourself time to deal with this, it is not something our minds can understand fully very fast no matter how "easy" we may have had it so far. Come here and talk to people who have been in your shoes. There is another site called Daily Strength that seems nice. Embrace the second chance you have been given at life. It's nice to meet you but I am sorry about the circumstances.
    Colleen
  • antjeanne
    antjeanne Member Posts: 13
    #9
    i had/ have the very same
    i had/ have the very same feelings. it hit me in the hospital. i was in the cancer ward. i was in the hall with true heros. one girl was there for the 7th time and was fighting like a champ. and i felt ashamed i didnt need the treatments or suffering they had. it made it a little hard to complain my belly hurt from the incision. we all must have the same feelings in one form or another. its real good to know its not just me.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #10
    antjeanne said:

    i had/ have the very same
    i had/ have the very same feelings. it hit me in the hospital. i was in the cancer ward. i was in the hall with true heros. one girl was there for the 7th time and was fighting like a champ. and i felt ashamed i didnt need the treatments or suffering they had. it made it a little hard to complain my belly hurt from the incision. we all must have the same feelings in one form or another. its real good to know its not just me.

    Nothing to feel guilty about
    As a survivor of Kidney Cancer each of us faced a disease that if unchecked causes death. Our first step right out of the box was to go thru major abdominal surgery. Many of us made it thru this "little procedure" with no further treatment, Others underwent new drugs and chemotherapy where the Cancer had metasticised. Many died along the way. Do I feel guilty being a survivor for 8 and 1/2 years? No. Do I feel lucky? Yes. Hopefully the other survivors and myself can help all of the newcomers to our little club and make it easier for them than it was for us. Only 3% of Cancer patients belong to our club. Let us help keep that number low. As one of the American Cancer slogans goes, lets celerate birthdays.
  • Mhamby
    Mhamby Member Posts: 13
    #11
    Cafewoman53 said:

    Meg
    This is so much to process right away, but we are so lucky to have caught the cancer early enough so that the surgery is basically the "only" treatment we will need. Give yourself time to deal with this, it is not something our minds can understand fully very fast no matter how "easy" we may have had it so far. Come here and talk to people who have been in your shoes. There is another site called Daily Strength that seems nice. Embrace the second chance you have been given at life. It's nice to meet you but I am sorry about the circumstances.
    Colleen

    Thank you
    I know you are right about giving it time. So far, talking to other cancer survivors, especially reading the responses to all the different topics on this site, has given me the healthiest food for thought. I appreciate the time you gave in responding to me and hope to have the chance to get to know you better through this forum. I can see how important mutual support really is!
  • Mhamby
    Mhamby Member Posts: 13
    #12
    antjeanne said:

    i had/ have the very same
    i had/ have the very same feelings. it hit me in the hospital. i was in the cancer ward. i was in the hall with true heros. one girl was there for the 7th time and was fighting like a champ. and i felt ashamed i didnt need the treatments or suffering they had. it made it a little hard to complain my belly hurt from the incision. we all must have the same feelings in one form or another. its real good to know its not just me.

    Agree
    I spoke to a breast cancer survivor last night. I knew she had been through chemo and really had to "fight the fight" to survive. She was wonderful and understanding and it was one of the best conversations I had thus far. Inevitably, she asked about treatment. I mumbled my usual answer about the surgeon getting it all and felt my usual touch of shame. I think it was a little less painful this time because I thought about what some others wrote here and in other posts. We all have cancer and we all fight it through various methods. The point for you and I and all the others who feel like fakers is that without our surgical treatment we would have had the same deadly outcome. I wish us all peace as we come to terms with this.
  • Mhamby
    Mhamby Member Posts: 13
    #13
    antjeanne said:

    i had/ have the very same
    i had/ have the very same feelings. it hit me in the hospital. i was in the cancer ward. i was in the hall with true heros. one girl was there for the 7th time and was fighting like a champ. and i felt ashamed i didnt need the treatments or suffering they had. it made it a little hard to complain my belly hurt from the incision. we all must have the same feelings in one form or another. its real good to know its not just me.

    Agree
    I spoke to a breast cancer survivor last night. I knew she had been through chemo and really had to "fight the fight" to survive. She was wonderful and understanding and it was one of the best conversations I had thus far. Inevitably, she asked about treatment. I mumbled my usual answer about the surgeon getting it all and felt my usual touch of shame. I think it was a little less painful this time because I thought about what some others wrote here and in other posts. We all have cancer and we all fight it through various methods. The point for you and I and all the others who feel like fakers is that without our surgical treatment we would have had the same deadly outcome. I wish us all peace as we come to terms with this.

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