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Susanrae

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  1. Like
    Susanrae got a reaction from Sharon L. in CT scan results   
    Sharon,  My prayers and positive vibes going out to you!  Hang in there!  Take care now.  Susan Rae
  2. Like
    Susanrae got a reaction from Tom Galli in Introducing...   
    Hi Marybelle:    Welcome to the site!  You will find invaluable support here.  Since April 2019 I have been getting treatment at Mayo Clinic, Rochester, MN, for my stage IV lung ca with brain metastasis.   I also worked there for 25 years.  
    You should be given a business card from any doctor, physician assistant, etc, that is involved in your husband's surgery.  If they don't offer one, ask for it and keep these in a safe place.  The Mayo complex is very large; I assume your husband's surgery will take place at St Marys Hospital.
    Please contact me via e-mail if you need any assistance.  I'd be happy to assist in any way.
    You both take care now...  Susan Rae
  3. Like
    Susanrae got a reaction from LouT in Got a call on my first scan result   
    I just saw your post; I have been away from the site for a few days.  Stable/NED is great news and relief is an excellent word to use after receiving this great news!  And you have such an excellent attitude--inspiration for us all!  Take care now.  Susan Rae
  4. Like
    Susanrae reacted to LouT in Newbie spouse of LCNEC patient.   
    Sophie,
    Like others, I want to welcome you to the forum.  You'll find a great group of folks here that can share experiences, answer some questions and give support so that you don't have to feel alone.  Being a caretaker alone is a very tough road (my wife has Alzheimer's) on its own add to that your husband being ill and it becomes a perfect storm.  Even after your mom leaves you're still worried about her and worried about your husband.  The only advice I can give you is to take care of you!  Let me start by ensuring you know that I'm not saying not to care about your husband, but I am saying that you need to find some time each and every day (it could be 30 minutes...moving up to an hour...then more) when you can be out of the caregiver business.  It can be a walk, a car ride, coffee or lunch with someone (friend, acquaintance), but you need some time for you.  Trust me, prior to my cancer I was running so hard that there were times I could hardly make it through the day and numbness became my defense against all the worry and pain.  If you have any hobby (music, knitting, painting, fitness) find some time to do it.  If you are religious speak to a minister, priest or reverend.  Please find something that gives you joy and make time for it in your life.  Your batteries need recharging.  You have a big responsibility to handle and you need to realize that if something happens to you, then your husband loses care.  But, once he recovers, he's going to want his wife back and you need to take care of her.
    This may sound silly, but imagine you see a good friend going through what you have just gone through.  That friend is in pain, tired and overwrought.  You're worried about her and her well-being.  What would you say to her???  I'll bet the words would be gentle and kind, nurturing and supportive and would be stressing how important she is and how she deserves to be taken care of.  Those words are for you... 
    Stay well, smile, breathe and we'll be here for you.
    Lou
  5. Like
    Susanrae reacted to Tom Galli in Newbie spouse of LCNEC patient.   
    Sophie,
    Welcome here. Do I understand your husband is being treated for large-cell neuroendocrine carcinomas (LCNEC)?
    Completely understand the energy-sapping effects of fractional conventional radiation.  Unfortunately, there is no way to minimize the fatigue. He will recover after treatment.
    My wife tells me that I was unreachable during period of my protracted treatment.  I believe now that the cause was depression and indeed you might seek a medical evaluation of depression for him. I wish I had a magic want you could use to stop his smoking.
    Anyway, you are one of us now and while we can't determine what might be your "normal" feeling, we certainly understand the challenges you both face.
    Stay the course.
    Tom
  6. Thanks
    Susanrae got a reaction from PaulaC in CT and bone scan   
    Great News!!!!  Very happy for you 😃!  Susan Rae
  7. Like
    Susanrae got a reaction from Anna K in Worried about my Dad   
    There is always hope Anna!  Prayers and hugs sent your way as you and your folks go through this difficult journey.  Take care now.  Susan Rae
  8. Thanks
    Susanrae got a reaction from judyb75 in HI just joined today and just diagnosed July 2,2019   
    I totally understand the need for a "quiet" day.  Happy to hear the MRI experience went well.  The technician involved can really make a difference.  And, yes, not knowing is the worst, but it is very comforting to know that everyone feels the same and we are not alone.  Take care now,  Susan Rae
  9. Like
    Susanrae got a reaction from Mally in Worried about my Dad   
    There is always hope Anna!  Prayers and hugs sent your way as you and your folks go through this difficult journey.  Take care now.  Susan Rae
  10. Thanks
    Susanrae got a reaction from judyb75 in HI just joined today and just diagnosed July 2,2019   
    Hi Judy B,  Glad to hear you had no side effects from the first round of chemo and prayers are with you as you go through the journey of the second round.  So far I have only received immunotherapy and am tolerating that well.  I am sure my turn will come with chemo!!  Has your MRI been scheduled yet?  You will get through it!  For me the key is to BREATHE..... but don't move!  Your attitude is great.....live each day for the moment!  Great words to live by no matter what juncture a person is at in their life.  Take care now, Susan Rae
  11. Like
    Susanrae reacted to Curt in Surgery recovery going well, but auto accident sets me back   
    Uber and Lyft for rides.  I long for the day I don’t have to own a car anymore. I’m glad you are on the mend Irka.  
  12. Like
    Susanrae got a reaction from LouT in New member   
    Hi Dini:  I too was diagnosed with Stage IV NSCLC adenocarcinoma, in April 2019, 2 cm brain tumor removed April 25, 2019; Keytruda every 3 weeks; so far all is going well and no side effects (knock on wood).  It is a very scary journey and all on this website understand.  You have joined an amazing group that will give you excellent support and information; voice all concerns as needed; it is a great group to lean on.  We are here for you.   I don't know what I would have done without them.  Take care now.  Susan Rae
  13. Like
    Susanrae got a reaction from Roz in Just Joined   
    Thinking of you Terri.  Hang in there!  Susan Rae
  14. Like
    Susanrae got a reaction from Terri L in Just Joined   
    Thinking of you Terri.  Hang in there!  Susan Rae
  15. Like
    Susanrae got a reaction from Curt in Power washing   
    Very happy for you.  The honey-do list will commence!!  Susan Rae
  16. Thanks
    Susanrae reacted to LouT in Update ....   
    Hope
    What a beautiful name. I've given up looking for the "perfect life" and there are still so many paths to travel. You're on a difficult one right now and none of us can guarantee an outcome, but there are some here who have been where your husband is now and their stories have had good outcomes. I'm sure they had down days and terrible side effects, but they survived. You need to stay strong for your husband and those precious children. 
    Take care of yourself, get rest, eat well, spend some time alone, meditate or pray or just be quiet and peaceful for a while to heal and strengthen yourself. 
    At one time I was sure that God had abandoned me as well... then I came here and realized he had sent me to a new kind of family. One where I could share my fears, pain and progress and not feel embarrassed to do so. I got great feedback and support that helped me through my cancer journey. I'm still on my own road to recovery but I just wanted to let you know that I doubt you've been abandoned... After all, there are doctors to help your husband, advances being made every day and stories {like Tom's} of battle and survival. Last of all you have all of us. We understand your pain and your journey. We're pulling and praying for your husband, you and your family. You've been surrounded by people who care and that is a beautiful gift. 
    Stay strong and don't lose faith.. 
    Lou
  17. Like
    Susanrae got a reaction from Susan Cornett in Just a quick hello   
    Happy Birthday!  Hope you had a great day with many more to come!
     
  18. Like
    Susanrae got a reaction from LexieCat in AWOL, but back with good news   
    Good for you!!
  19. Like
    Susanrae got a reaction from Tom Galli in Recently started treatment   
    Hi Bootsie:  I was diagnosed with NSCLC April 2019 and have received 2 infusions of immunotherapy, Keytruda.  So far the only side effect I have have had and only for the past two days is extreme fatigue, maybe it will pass.  Any side effects so far from your treatment?  Take care now.  Susan Rae
  20. Like
    Susanrae reacted to Isabelle49 in Brain MRI   
    T minus 53 minutes to MRI. Praying it’s clean. Bless you all.
  21. Like
    Susanrae got a reaction from Tom Galli in CT results and exhale   
    Susan:  Very happy for you!!  Susan Rae
     
     
     
     
  22. Like
    Susanrae got a reaction from Susan Cornett in CT results and exhale   
    Susan:  Very happy for you!!  Susan Rae
     
     
     
     
  23. Like
    Susanrae got a reaction from Brenda F in Our journey with STAGE III-C non small cell (inoperable) LUNG cancer..   
    Hi Brenda:  Very sorry to hear about all that you and your husband are going through.  I am stage IV lung ca with brain metastases diagnosed April 2019; started immunotherapy (Keytruda) 3 weeks ago and have my next dose this Thursday.  So I am very new to this also.  A cancer diagnosis is very overwhelming and scary for patients and their caregivers alike but you and your husband can find comfort, support and a lot of information from the members of this group.  They are a godsend.  It is OK to cry; Lord knows I have had my days.  Take care now and hang in there.  My prayers are with you and yours.  Susan Rae
     
     
  24. Like
    Susanrae got a reaction from Curt in Swimming in Questions   
    Hi Marie:  Susan Rae here.  Very sorry to hear the bad news; but, on a positive note, you are a member of a great group that will provide you with good information and good support...both of which are invaluable while fighting this fight.  In April 2019, I was diagnosed with Stage IV lung ca with brain metastasis.  Today I had my second immunotherapy treatment.  I don't know what I would do WITHOUT the support and information provided by the LUNGevity group.  The lackadaisical attitude of some of the healthcare professionals you have encountered in Canada is awful; very good to know you will be treated in the US.  Take care now, Susan Rae
     
  25. Like
    Susanrae got a reaction from Rower Michelle in Swimming in Questions   
    Hi Marie:  Susan Rae here.  Very sorry to hear the bad news; but, on a positive note, you are a member of a great group that will provide you with good information and good support...both of which are invaluable while fighting this fight.  In April 2019, I was diagnosed with Stage IV lung ca with brain metastasis.  Today I had my second immunotherapy treatment.  I don't know what I would do WITHOUT the support and information provided by the LUNGevity group.  The lackadaisical attitude of some of the healthcare professionals you have encountered in Canada is awful; very good to know you will be treated in the US.  Take care now, Susan Rae
     
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