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Susanrae

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  1. Like
    Susanrae reacted to Karen_L in Quick Update: I've graduated...   
    My CT with contrast happened Monday, I received results Monday afternoon, and met with the oncologist today. 
    The scan indicates that my situation is stable. 
    My oncologist says I can go from scans every two months to scans every three months. 
    Brain checkin next month. 
    I am very very grateful.
  2. Like
    Susanrae reacted to Karen_L in Don’t want to continue   
    It's a rough road sometimes, physically and emotionally. You've been hit with a lot, yet you keep going. Have all the meltdowns you want. You're a hero no matter how many you have.
  3. Like
    Susanrae reacted to Claudia in I can't believe that this is my story   
    Hi Everyone!
    I'm sorry it's been a long time since I posted an update to my stage IV NSCLC story but here it is. After being told that I was non-surgical  because of being stage IV I am here to tell you that my oncologist and I have decided that the end of November will be my last treatment. After 3 1/2 years of chemo, Keytruda, SBRT radiation and finally a left upper lobectomy and 2 years of clean scans and more Keytruda I am being set free. November 4 will be 2 years that I am NED. I can't believe it. Stage IV and now NED for 2 years. I feel like the luckiest person on the planet. It just goes to show that treatments are getting better and patients are living longer. Never give up. NEVER. 
    Thanks for all the support through this insane journey. I love you all.
    Claudia
  4. Like
    Susanrae got a reaction from catlady91 in Radiologist vs. Oncologist   
    Yay!!  Very happy for you!!
  5. Like
    Susanrae got a reaction from Justin1970 in Radiologist vs. Oncologist   
    Yay!!  Very happy for you!!
  6. Thanks
    Susanrae got a reaction from Rower Michelle in Radiologist vs. Oncologist   
    Yay!!  Very happy for you!!
  7. Like
    Susanrae reacted to LouT in NED Is a Nice Way To Start the Day   
    I had my first annual CT Scan yesterday (lobectomy was 5/2/19) and although I was concerned about the longer interval between scans all worked out well.  The scan result reads "stable with no evidence of recurrant or malignant neoplasm".  I have my meeting with the oncologist on Wednesday and can focus on the future. Scanziety is real, but some great folks in my life kept my feet on the ground and my head on my shoulders while God did the rest.  I'm quite blessed.

    Lou
  8. Like
    Susanrae reacted to LouT in Brain MRI: It's not horrible news, just not what I wanted   
    Karen,
    Yes, LC is a disease of waiting, scanziety and a host of other uncomfortable things.  My prayer is that this is edema and nothing more.  Enjoy your time away and have a great respite from all this.
    Lou
  9. Like
    Susanrae reacted to Scruboak in Brain MRI: It's not horrible news, just not what I wanted   
    Wait and see - ugh! And, your practice of gratitude is soooooo heartwarming. 
  10. Like
    Susanrae reacted to Karen_L in Deep sadness crawling back   
    I wish I could say something to ease your grief. All I can say is that I know that same dark place, the same tears. 
    A real lifesaver for me has been a weekly meeting with a counselor and some medication for depression. I deeply appreciate being able to sit with someone and talk about the stuff that would be too hard for my family, and to weep. I save all the "what if...." sentences to open up in that space. 
    Today I decided to withdraw from a community activity, not because I feel sick, but because I feel a need to be mindful of the parameters I live within. I want my days to be full of who and what I love. There's not room for anything less. I think I made the right decision, for several reasons, but after I wrote my resignation email, I felt emotionally clobbered and teary. It happens every time I come face to face with a new aspect of my life with cancer. So I headed out on my bicycle for a little while. On one hand, I was riding along, marveling at the blue sky, the flowers, the people on the street, and on the other, I was just...so, so full of grief. That's just how it was today. It may be this way tomorrow, too. That's OK-- It takes my feelings a little while to catch up with my thinking. 
    I will be keeping you in my heart tonight, and hoping tomorrow brings a little light for you. 
    Karen
  11. Like
    Susanrae reacted to catlady91 in Deep sadness crawling back   
    These feelings are completely normal. Everybody with cancer including loved ones of cancer suffers have those moments. I know I do. I try not to think too much into the future and focus on the present and the small things that I have to look forward to such as a holiday or going out for drinks and dinner with family. I guess it's different when you have young children and there are so many milestones far off in the future. 
    Nobody can predict the future. What people expect from the future doesn't always happen. Somebody might be told that their cancer is terminal and they have months left to live but 20 years later they're still alive! 
    I can understand it's very emotional to think about your children's futures. I sometimes get emotional about my mum as well especially if I hear somebody pass away from cancer. I think could that happen to my mum and I get depressed.
    Every person and every cancer is different. Lung cancer has seen so many advances in treatment over the past decade. More than other cancers such as pancreatic cancer where there's been very little progress. I think you mentioned that you have NSCLC which is far easier to treat than small cell which is far more aggressive.
    There's a lot of hope out there. I read an article in my mum's Polish magazine about lung cancer. In the article it said that lung cancer is no longer a death sentence and even with stage 4, survival is no longer measured in months and that even some people can live for more than 10 years.
    Cancer is scary and unpredictable but try to stay positive. You will have moments like this where you worry and feel great sadness for the future but it's completely normal. Those feelings are perfectly valid but fears do not predict the future. Nobody can. The future is unpredictable and with it comes good possibilities. I hate when people ask the question "where do you see yourself in 5 years time". I have no idea! Life changes and plans and priorities change too. People want who try to predict the future and plan their futures clearly are afraid of uncertainty and losing control. Although unpredictability can be scary, it can also be exciting and full of unexpected things that turn out to be good. 
    Try to focus on the present and things to look forward in the near future such as a holiday or a day out with your family. I also think it's important to have hope. Thanks to lung cancer treatment, more and more people are enjoying a future which wouldn't have been possible in the past. When my mum was diagnosed with stage 3B lung cancer in Feb 2020, the consultant said that 10 years ago such a diagnosis would have been very bad news and my mum would only really be given palliative care but now there's been such rapid advances in treatment that this diagnosis is no longer a death sentence.
    2 and a half years later, my mum is alive, well and thriving and NED! She hasn't had any treatment since Jan 2021!  
    Anything is possible xx
  12. Like
    Susanrae reacted to Scruboak in Deep sadness crawling back   
    Oh, Lily. I cried when each of my daughters transitioned to a new phase of their lives and that was way before I was diagnosed with lung cancer.  And yes, I too have bouts of feeling like I’m not normal and have difficulty connecting because of the cancer.  I’m learning to simply honor my grief and stop fighting it. Somehow it passes eventually. I feel for you. With love, Suzan
  13. Like
    Susanrae got a reaction from LouT in Well Mayo knows how to deflate my progress - 2 Distinct Cancers present.   
    Hey Kamoto, I am not on this site very often but do occasionally surf it and saw your post.  I am a stage IV lung cancer since April 2019 with brain, adrenal, abdominal LN mets and do my doctoring at Mayo and also live fairly close by.  You mentioned you want a pickup on Monday the 25th.  Maybe I can be of some help??  Let me know.  Would be glad to do what I can!!  Take care now. 
  14. Like
    Susanrae got a reaction from Tom Galli in Well Mayo knows how to deflate my progress - 2 Distinct Cancers present.   
    Hey Kamoto, I am not on this site very often but do occasionally surf it and saw your post.  I am a stage IV lung cancer since April 2019 with brain, adrenal, abdominal LN mets and do my doctoring at Mayo and also live fairly close by.  You mentioned you want a pickup on Monday the 25th.  Maybe I can be of some help??  Let me know.  Would be glad to do what I can!!  Take care now. 
  15. Like
    Susanrae reacted to Kamoto in Well Mayo knows how to deflate my progress - 2 Distinct Cancers present.   
    Thanks Karen.  The Mayo oncologist is a rock star.  She has 200+ medical journal citations.  Her specialty is lung, so she is gathering some more data to present me to their weekly meetings, and get Esophagus expert opinions.  Mayo doesn't do anything half *ss.  I like that in them. 
  16. Like
    Susanrae got a reaction from Tom Galli in NED!   
    Very happy for you!
  17. Like
    Susanrae got a reaction from Justin1970 in NED!   
    Very happy for you!
  18. Like
    Susanrae got a reaction from Susan Cornett in NED!   
    Very happy for you!
  19. Like
    Susanrae reacted to RJN in Thought of the day - why we go through this…   
    About a year ago, I habitually played two rounds of 9 holes of golf weekly at my very ondulated golf course. At some point in June, I realised I wasn’t quite well as I would get worn out at first the 8th, then the 7th and finally the 6th hole. I partially put it down two poor post-lockdown form, but it didn’t seem right that I would get worse, rather than better. Fast forward through scans, tests and a diagnosis of stage 4 LC, immunotherapy and a long round of radiation, I went out on the course for the first time in a year, and pretty much breezed through 9 holes in glorious London sunshine.
    I realise that I didn’t go through all of that just to survive, but to live; spent time with those I love and do things I enjoy. To me, this was actually a profound realisation, and one I hope can stay with me for however long it lasts. ❤️

  20. Like
    Susanrae got a reaction from LouT in LexieCat/Teri Updates   
    She brought sooo much to this forum.  She will be missed!!  Take care, Susan Rae
  21. Like
    Susanrae reacted to Deb W in LexieCat/Teri Updates   
    Dear Steph,
    I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
    Warmly,
    Deb
  22. Like
    Susanrae reacted to Roz in LexieCat/Teri Updates   
    Dear Steph, 
    I'm so very sorry to hear about your mom. She has inspired and helped so many of us on these forums. 
    I sincerely hope that she knows how many of us she has touched. I completely understand her decision to transfer to hospice care but know it must be so hard on the family.
    I hope she finds peace and comfort.
     
    Love, 
    Ro
     
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