NED 6 months - New Member

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HoneyD54
HoneyD54 Member Posts: 10
in Anal Cancer #1

Hi! While I am a new member now, I have been reading the posts in this forum for 8 months. And all of your tips really helped me get through it.  On June 9th 2017 I awoke from a colonoscopy (thought I had a hemroid) and was advised that I had a large anal tumor. I was handed contrast to drink and was immediately escorted downstairs for a CT scan to see if there were more.  Fortunately my husband was with me and I recall us both sitting there totally in shock, waiting and watching a very pregnant woman pacing the hallway to encourage her baby to arrive.  I will always remember that moment in time and how odd it felt to be afraid for myself, yet marveling that a new person was entering this world.   Fast forward to today and I am grateful to have weathered the past 6 months and am thankful to be in Seattle where I have access to excellent cancer care.  I gathered so much practical information from this site during my treatment and continued recovery that I just wanted to say thank you.  While you were all helping others cope, you were also helping me.  I was diagnosed with Anal/Rectal cancer and it was a large T4 stage 3 squamouse cell carcinoma so it was in lymph nodes but had not matastisized.  In July-August I completed the standard grueling treatment of 5 1/2 weeks of high dose radiation and daily 5FU plus 2 Mytomyacin infusions.  After the burns healed I started both regular and pelvic floor physical therapy which I highly recommend.  I have a solid group of supportive friends and family and I returned to work full time in late November. For the first few months I kept up with both working and physical therapy, then about mid February I stopped doing PT because I was fatigued after working all day.  While I continue to get stronger each day, I am determined to get back to my PT since I feel that I hit a slump and I think the therapy was also helping me emotionally.  I realize that people think that because I am cancer free that I am fine now.  When really our journey continues.  I am still adjusting my expectations regarding the lingering side effects of the cancer, the chemo and the radiation.  I feel pretty good, but I know I will continue to feel even better over the coming months.  Celebrating 6 months NED!

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  • Wellzen
    Wellzen Member Posts: 42
    #2
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    Congratulations. 6 months NED

    Congratulations. 6 months NED 

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
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    HoneyD54

    Welcome and congratulations on getting through treatment and being 6 months NED!  It sounds like you are doing quite well--I'm so glad to hear that.  It does take time for things to return to normal, albeit a new normal in some ways.  You have a very positive attitude, mixed with a sense of reality, so you will do very well as you continue on the road to recovery.  Take good care and please keep us posted on how things are going.  I wish you all the best!

  • HoneyD54
    HoneyD54 Member Posts: 10
    #4
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    mp327 said:

    HoneyD54

    Welcome and congratulations on getting through treatment and being 6 months NED!  It sounds like you are doing quite well--I'm so glad to hear that.  It does take time for things to return to normal, albeit a new normal in some ways.  You have a very positive attitude, mixed with a sense of reality, so you will do very well as you continue on the road to recovery.  Take good care and please keep us posted on how things are going.  I wish you all the best!

    Mp327

    Thank you. It's good to talk to people that understand the new normal. Best to you also.

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
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    HoneyD54 said:

    Mp327

    Thank you. It's good to talk to people that understand the new normal. Best to you also.

    HoneyD54

    Thank you.  I am almost 10 years post-diagnosis and doing pretty well.  Take care!

  • Kim Gaia
    Kim Gaia Member Posts: 73
    #6
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    Congrats on your 6 months NED

    Congrats on your 6 months NED, HoneyD54! You must have been thrilled to get that news. I long for such news myself. Not sure if it will be possible. But I keep the faith. What else can we do? Was diagnosed in March this year. Have not yet started chemo-radiation. My odds don't seem particularly good, partly because I also have CLL (Chronic Lymphocytic Leukemia), which wreaks some havoc with my immune system and can cause low neutrophils. Could affect my ability to do full chemo.

    I would be interested in what the 'new normal' is for you, HoneyD, if you don't mind saying. Are you able to walk distances and sit without discomfort? Bowel continence okay? I think it's great that you got going on regular and pelvic floor PT as soon as you were able. That would probably make quite a difference to recovery.

    all the best to you!

    kim

     

  • HoneyD54
    HoneyD54 Member Posts: 10
    #7
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    Kim Gaia said:

    Congrats on your 6 months NED

    Congrats on your 6 months NED, HoneyD54! You must have been thrilled to get that news. I long for such news myself. Not sure if it will be possible. But I keep the faith. What else can we do? Was diagnosed in March this year. Have not yet started chemo-radiation. My odds don't seem particularly good, partly because I also have CLL (Chronic Lymphocytic Leukemia), which wreaks some havoc with my immune system and can cause low neutrophils. Could affect my ability to do full chemo.

    I would be interested in what the 'new normal' is for you, HoneyD, if you don't mind saying. Are you able to walk distances and sit without discomfort? Bowel continence okay? I think it's great that you got going on regular and pelvic floor PT as soon as you were able. That would probably make quite a difference to recovery.

    all the best to you!

    kim

     

    Hi kim

    it must be difficult to have CLL and now have to deal anal cancer.  I am sorry you have to go through this but it worked for me and I hope it will for you too.  Here is the new normal for me now at 9 months post treatment (6 months NED). Yes I can walk distances, I recently went on an easy (mostly flat) 3 mile hike.  i can walk up hills and stairs but I am slower and have to take a quick rest after 3-4 flights of stair.  I haven't been running or biking yet.  i have swam a few times and that has felt good. Gentle easy yoga has been best for me because of the stiffness In my hip flexors and hamstrings.  I have some pain in my left hip that I notice getting in the car and putting on shoes.  The muscle/tissue under my sit bone R side where the tumor was, gets tender and slightly inflamed when I sit on the small hard plastic chairs at work (i work in an elementary school). So I sit on a small pillow or therapy ball whenever possible.  I have a square gel cushion that I have used since I was diagnosed and I still use it at home and in the car.  I even brought it into restaurants with hard seating.  I love that cushion!.

    my bowel funcations have greatly improved over the past few month.  Initially I stayed close to home, had to run to the bathroom if I felt any gas and sometimes a fart would leak a small amount of feces with mucous. Currently I rarely take Imodium and my BM are still snake like but mostly firm.  I go less frequently and haven't had any leakage but I still get diarrhea occasionally so I always know where the batbrooms are locate.  I'm trying to figure out my diet as it relates to my BMs and I carry Imodium and spare under ware with me.  Some trigger foods for me are milk, beans and some raw vegetable.  Oh and beer is out now too but I have been able to enjoy some wine again. My digestive trac is louder than it used to be and my husband says I sound like a creaky door.  I have seen some blood in my stool but it is not much and is from radiation proctosis which my RAD oncologist said typically occurs 8-18 months post treatment and goes away. I have some vaginal stenosis and am using a dialator.  I hope that info helps.  Best to you through your. treatment and recovery. 

  • Nana442
    Nana442 Member Posts: 30
    #8
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    HoneyD54

    Tomorrow will  be my 6 week post appointment for anal cancer  I wish I would have found this site but better now than never!  Thank you for the information.  I still take miralax & a stool softner every night to keep my bm's soft, im still very tired, I spend many days in my home, I haven't explored the vaginal stenosis pretty nervous!   These blogs are a great reference.  This is my first time on here i hope im doing this right?

  • mp327
    mp327 Member Posts: 4,440 Member
    #9
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    Nana442

    Welcome to this discussion group.  I'm sorry you didn't find it prior to your treatment, but am glad you're here now.  I hope you find some good information here as you recover from treatment.  I wish you all the best with your appointment today and hope all the news is good!  Take care.

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #10
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    Hooray!

    Glad to hear it. 

    .^_^.

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