ggabrielides Posted November 20, 2011 Share Posted November 20, 2011 I need to vent. When my 71 year old mom was diagnosed with Stage IV NSCLC in late September, we were told that, with treatment, she would improve and could lead a "new normal" kind of life. At first, her assigned docs at her local community hospital were very attentive and involved. As her condition became more complicated (through discovery of additional tumors, infections and other issues), and treatment became more complicated (some of it due to the inability of the community hosp. to provide radiology to in-patients), her "docs" have become completely inaccessible, and barely involved. As a result, her condition has grown worse and worse. At this point, she is not ambulatory, her pain meds/sedation have left her unable to speak for herself. In the past two days, my dad and I have been desperately trying to get answers about my mom's condition (one of the associates of my mom's "docs", actually told my dad via cell phone that he "doesn't know what to do next" and left it at that. There was no talk of hospice or any next steps or anything like that. In fact, unbelievably, the hospital social worker asked my dad which rehab center (!?) she should be transferred to--obviously with no idea of my mom's true condition. My dad and I are completely devastated. My mom is incredibly sad, and cries even through her sedation. In the beginning, I did not want to inject my opinions, as my parents seemed very satisfied with mom's care. I gradually became suspect of the handling of her care, and started too slowly to express my suspicions. I live an hour away (without traffic) from my parents, and could not be continuously monitoring the situation (plus, her docs were impossible to get a hold of). My husband and I are working with great urgency to get her into a major university hospital in our area. We have some connections that can assist us in getting her transferred within the next two days. Our prayer is that she receives top quality care, and even if she does not make it, at least we would know that it was not because we gave up on her. I can't help but think about how it is BECAUSE of the inefficacy of her care that she is in this condition. I would have thought that if the docs could not handle this complicated of a case, she would be referrred to another doc/hospital/cancer treatment center much earlier. We are all sad and incredibly heartbroken-- the emotional toll of all this in almost unbearable. If you are so inclined, please keep my mom (and dad) in your prayers as my husband and I continue to work on her behalf. Thanks for reading, Gina Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 20, 2011 Share Posted November 20, 2011 No apology needed for venting here! I understand completely and hope you get exactly what you and Mom need right now!! It is sad that doctors can be like this sometimes!! Hugs and Prayers and thoughts to you and family right now! Be tough and strong. Quote Link to comment Share on other sites More sharing options...
Alan Posted November 20, 2011 Share Posted November 20, 2011 Gina, I agree with you. The sudden shift in care you're getting isn't acceptable. Make those calls to that University Hospital today. This happens far too often. She deserves morethan that. There IS help and HOPE. Make the move. Quote Link to comment Share on other sites More sharing options...
Joppette Posted November 20, 2011 Share Posted November 20, 2011 Hi Gina, I'm glad you came to vent. If you do nothing other than get Hospice involved, that would be a good thing. They administer pain care with expertise, and are very good at giving their patient quality of life. And that is NOT the doctor's call. You can call them in at any time. If she is not in treatment, she should be in their care. I pray for you all and hope and pray this situation gets better immediately. MI Judy Quote Link to comment Share on other sites More sharing options...
ggabrielides Posted November 21, 2011 Author Share Posted November 21, 2011 Yippee!!! My mom is going to the Lurie Cancer Center at Northwestern (Chicago)!! My mom can now get the care (and attention) she deserves. posting.php?mode=reply&f=38&t=45977# Thank you all of you for your support. I really do appreciate it. I feel as though angels are guiding the way here, both human (in you) and celestial. Peace, Gina Quote Link to comment Share on other sites More sharing options...
ggabrielides Posted November 21, 2011 Author Share Posted November 21, 2011 OK, I tried to apply a smiley in the first paragraph. I don't think it worked. Oh well. I am feeling happy now, though! Quote Link to comment Share on other sites More sharing options...
Muriel Posted November 21, 2011 Share Posted November 21, 2011 I'm really happy for you and your family. I'm sure she will get the care she needs at Northwestern. Outstanding hospital and outstanding cancer care. Muriel Quote Link to comment Share on other sites More sharing options...
eric byrne Posted November 21, 2011 Share Posted November 21, 2011 Hi Gina, Welcome to LCSC,what a sad story you share,well at least after further posts you have a happy outcome to share. I know the devastation a LC dx came bring to a family,and I have found time itself is a great healer.There are a lot of survivors at Stage 4,so dont lose heart,one day at a time as the saying goes. Please pass onto your Mum my very best wishes for a successful outcome as her treatments progress.Do keep in touch and let us know how she is doing. Quote Link to comment Share on other sites More sharing options...
Alan Posted November 21, 2011 Share Posted November 21, 2011 Great news Gina, always be the squeaky wheel. All the best to you and your mom. Way to go. Quote Link to comment Share on other sites More sharing options...
ggabrielides Posted November 21, 2011 Author Share Posted November 21, 2011 ACK! Dang paperwork... Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 21, 2011 Share Posted November 21, 2011 Yes, it's the worst. Hope it's leading to good things though. Judy in KW Quote Link to comment Share on other sites More sharing options...
ggabrielides Posted November 21, 2011 Author Share Posted November 21, 2011 She's on her way! So relieved... for now. Quote Link to comment Share on other sites More sharing options...
ggabrielides Posted November 26, 2011 Author Share Posted November 26, 2011 The last few days have been extremely difficult. Though the level of care, expertise and communication have been outstanding, my mom's cancer had spread so much that treatment of any kind would not be of any benefit at all. The agitation alone of radiation therapy would be detrimental. In the last couple of days, she has been moved to palliative care (within the hospital, thank goodness). She is in so much pain that she has been put on very high doses of morphine. Doc say she has probably days left... She is still very cognizant (when she is alert) that we are there, and all we (and the hospital) can do is keep her company and comfortable. It breaks my heart to see her this way, since I can tell she is still very much inside her failing body. I pray she passes without pain and in peace. Thanks for all your support, angels all of you, Gina P.S.: I will continue to lurk the boards and offer support to anyone who needs it. I can also act as a buddy, and will work for Lungevity, fighting to raise awareness and funding for the important research that needs to be done! Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 26, 2011 Share Posted November 26, 2011 Oh Gina I hate to read this news this AM!! I know how your heart is hurting right now. my thoughts and prayers are with you and Family this am and always. please keep us posted and we are always here to help[ you no matter what! Quote Link to comment Share on other sites More sharing options...
Joppette Posted November 26, 2011 Share Posted November 26, 2011 Gina, Well, I'm thankful that she is getting good care and pain control. I'm so sorry for the situation you are all dealing with. I'm glad you want to stay at the boards. MI Judy Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 28, 2011 Share Posted November 28, 2011 Gina, sorry I've been absent so long since this. Rare family time with us all together. I hope the holiday passed for your Mom painfree and in the comfort of her family. I know how hard it must be for you. Thanks for wanting to stay onboard. We need newcomers as others drift away over time. Judy in KW Quote Link to comment Share on other sites More sharing options...
ggabrielides Posted November 30, 2011 Author Share Posted November 30, 2011 Well, mom passed on Monday. My dad and I thank God she is finally free of her ravaged body and pain. As much as the fine staff at Northwestern tried, her pain managed to come through the huge doses of Morphine she was given. She is now at rest in the light with her mom, dad, and brother. One of the most difficult things for us to process was the lightning-fast speed with which this cancer did its damage and took mom. Even though we watched her die, it is still a bit unreal, especially when I go to my parents' home. She is everywhere there. (Sigh.) Again, thank you all for your support and kind words, Gina Quote Link to comment Share on other sites More sharing options...
eric byrne Posted November 30, 2011 Share Posted November 30, 2011 Hi Gina, I am so sorry to read about your Mums passing,please accept my sympathy.This was so sudden,perhaps in view of her discomfort,God has intervened. I do hope you will continue to visit us here in the future,my very best wishes for you and your family. Quote Link to comment Share on other sites More sharing options...
RandyW Posted November 30, 2011 Share Posted November 30, 2011 My thoughts Prayers and condolences Gina. We are always here for you.. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 30, 2011 Share Posted November 30, 2011 My condolences to you and your family. I can "hear" what a huge empty space her passing will leave in your life. Judy in KW Quote Link to comment Share on other sites More sharing options...
ginnyde Posted November 30, 2011 Share Posted November 30, 2011 Very tough to lose a Mother. You will hear her voice for years to come as you face each decision in your life. I wish you and your Dad peace and strength in the coming times. Quote Link to comment Share on other sites More sharing options...
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