I think I will stick around for awhile!

Curlyn
Curlyn Member Posts: 189
in Head and Neck Cancer #1

Hello Everyone,

I thought I'd drop by with words of encouragement. I know when I read Phrannie's post, it encouraged me! (I'm so very happy for you, Phrannie). And Matt and others were so supportive on this site. I want to give back.

It's been a 14 months since my surgery (previous posts are here somewhere) I had radiation twice- oh, what fun- then my cancer was found to have spread. Nightmare. Back to hospital falling, unable to see or walk, seizures, prior to my 2nd radiation and Opdivo. I said my tearful goodbyes to the people that I loved and was grateful for a full life and the opportunity to tell them that I loved them one last time.

But I didn't die!! I started radiation again and then Opdivo; my eyesight is much improved, my dizziness improved, I walked initially only with assistance and great difficulty huffing and puffing, and just last night was able to do close to 30 city blocks at a good clip with my daughter, small dog, and under my own steam. I feel so much better every week- oh, how I had forgotten what that felt like. And I am once again thinking that I might make it back to the gym.

Furthermore, I have gained wt and am able to once again taste my food, have saliva and enjoy a big improvement in my swallowing. And I am drug free except for Synthroid.I do have permanent deficits but considering what I have been through I am lucky to be alive and will happily live c these.

My scan to see if the Opdivo is working is in a couple of weeks. But my doc tells me that I am doing too well for it not be conferring some benefit. How much, remains to be seen.

Good luck everyone, for those just beginning the journey, there really are better days ahead for many of you. 

 

 

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #2
    Curlyn Amazing Story

    You were on your death bed and now take long walks with your daughter. What a miracle. You are feeling better every day and are truly blessed. Congrats and I celebrate with you and may your days be many as you look ahead. Just goes to show why it is said many times on this forum NEGU-Never Ever Give Up. Have a blessed life-Russ

  • Curlyn
    Curlyn Member Posts: 189
    #3
    wbcgaruss said:

    Curlyn Amazing Story

    You were on your death bed and now take long walks with your daughter. What a miracle. You are feeling better every day and are truly blessed. Congrats and I celebrate with you and may your days be many as you look ahead. Just goes to show why it is said many times on this forum NEGU-Never Ever Give Up. Have a blessed life-Russ

    Thanks wbcgaruss. If I live

    Thanks wbcgaruss. If I live long enough immunotherapy may prgress to a cure. Fingers crossed.As you say, never ever give up.

  • Dean54
    Dean54 Member Posts: 160 Member
    #4
    So glad your back Curlyn

    I check on here quite often to see if you ever came back, especially with some good news..awesome! So glad you are getting better again and missed you dear.

  • Curlyn
    Curlyn Member Posts: 189
    #5
    Dean54 said:

    So glad your back Curlyn

    I check on here quite often to see if you ever came back, especially with some good news..awesome! So glad you are getting better again and missed you dear.

    Thanks dean! I missed you,

    Thanks dean! I missed you, too, and am hoping that you will feel better, swallow better as time goes by. 

  • Klingels
    Klingels Member Posts: 78
    #6
    So glad to see you are doing better

    I am so happy you are here. I have read your story, and have felt concern over these many months. Congratulations on your marked improvements. I will pray for good news from your doctors.

  • donfoo
    donfoo Member Posts: 1,773 Member
    edited September 2018 #7
    wishing the best

    Thank you for sharing your continued battle with the beast. It sure offers hope for those worrying about recurrence. Wishing for best outcomes from the new reports. Don

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    #8
    Curlyn that is amazing news..

    Curlyn that is amazing news.. Your walk of life has had its ups and downs. Now you see the sun again... 

  • Curlyn
    Curlyn Member Posts: 189
    #9
    Klingels said:

    So glad to see you are doing better

    I am so happy you are here. I have read your story, and have felt concern over these many months. Congratulations on your marked improvements. I will pray for good news from your doctors.

    Thanks, it sure feels good.

    Thanks, it sure feels good.

  • Curlyn
    Curlyn Member Posts: 189
    edited September 2018 #10
    donfoo said:

    wishing the best

    Thank you for sharing your continued battle with the beast. It sure offers hope for those worrying about recurrence. Wishing for best outcomes from the new reports. Don

    My hope is that it does offer

    My hope is that it does offer a life raft to those who need it. Thanks Don.

  • Curlyn
    Curlyn Member Posts: 189
    #11
    Darkdancer333 said:

    Curlyn that is amazing news..

    Curlyn that is amazing news.. Your walk of life has had its ups and downs. Now you see the sun again... 

    Yes, amazingly, the sun does

    Yes, amazingly, the sun does shine! 

  • Paducahman
    Paducahman Member Posts: 1
    #12
    Any update?

    Your post was very encouraging.  I too have walked in the shadow of the valley of death but am starting to believe I may have a chance.  I started with cancer in a toncil which then came back just as I was starting to eat again.  I was told the worst and prepared to die but 16 months later Im still here!  I recenty started on Opdivo which appears to be working.  It has it side effects but I have hair and have gained weight.  I hope you are doing well!

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