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    Lung cancer patient/survivor
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  1. Hi there Julia, I had a CT guided needle biopsy in September. I was TERRIFIED of it, and fretting about it, probably slept less than ever in my life. I was EXTREMELY clear with them that I was terrified, and that I definitely needed very good sedation, as a sense of pain would make me jump from the table. I had concocted myriad scenes of horror...but the all from the staff took my words to heart and my told me that they'd take good care of me. Well, the whole thing went VERY well, and I DID have the collapsed lung. I was kept overnight, and the chest tube to correct this problem was not really bad at all...it is a HUGE difference from the tubes that I had to have after surgery, which were very painful and much bigger in diameter. This chest tube for the collapsed lung was very thin diameter, and -- just wasn't that bad at all. I felt like such a super-hero once I was through with it; haha. Hence -- even with the dreaded complication of the collapsed lung, it really, really was not bad. It did end up being cancer, so I was operated on the 19th of October -- home recuperating now. Now those tubes...a different picture. However, if staff is good about pain control, even that was endurable. Bottom line-- we do what we can to avoid pain but we will pay the dear prices to stay healthy...heck...to stay alive! I believe, firmly, that if you apprise your team of your fear, they will be as gentle and accomodating as professionals were with me. Sending cheers for your progress, and wishes that it all results as easy as was my experience! Sending greetings from the coastal forests of Northern California. ❤️ ~ joana
  2. alascerca


    Hi, I am seeing the various meetups ("Coffee Talk; "Wednesday Wisdom," etc. Can you tell me the time zones applicable to the meetup times? Not sure if it is Pacific, Eastern... Thanks! ~joana
  3. Dear and lovely group, First things first: I write a lot and apologize for my long-windedness! Questions in bold. I am a rather new member, and came out of hospital on the 24th of October (Sunday night) after a week there; for a resection of the upper left lung. The surgeon felt that a resection was sufficient instead of the whole lobectomy initially expected, and seems pleased with his work. He told my husband that he spotted something on my lower lobe while he was doing the surgery, and took that out just to check it, but doesn't suspect that it is malignant. OK. So... I have been home four days and have seen a visiting nurse once; she came yesterday. She was shocked by the amount of crackling that she heard, but I think that perhaps she is also not accustomed to lung cancer patients just sprung from surgery. I have a lot of pain in a spot which I would imagine sits over where the heart is. I believe that it is residual pain from the chest tubes (I had those horrors in me for 6 days; what HELL), but am not quite sure how to evaluate it. This spot hurts when I breathe, so it is activity-exacerbated. I am making sure that the incisions are clean and that I am showing no signs of complications. Oddly -- at least to me -- I have no follow up appointments yet, and no doctors have called to check in on me at all. I distinctly had the feeling that the surgeon was there solely to cut, and that was that, so I am not surprised by this silence from him, anyway. I feel as though I have been unceremoniously kicked from the nest. Pathology has not come back yet, so I am guessing that they are awaiting those results from which to make the most fitting follow up appointments? Does it seem strange four days out, that there has been no follow up, and that there is no appointment yet? Or is this par for the course since pathology is still not in yet? I feel as though I were at loose ends. I am not sure whether to call pulmonology, or oncology, or the surgeon's office, and will soon wend my way through that tangle. Also...I'd like some validation or correction: this residual pain is/ can be quite strong, right? I handle pain well, and am managing. I believe that it feels worse than it is because it's a constant reminder of today's uncertainty...a fate that's been thrown to the skies. Ever appreciating your presence here. Interestingly, I am a counselor for children who have cancer and I facilitate a large adult group, also. Due to previous cancer disability, I do not work a regular job any more, but I I am well aware of the common emotional fallout post-surgery, and am trying to walk myself through that sensation of depression. I plan to write about it more, as once again, I am the one experiencing it (this is my third major cancer; ugh). Some of it is PTSD, a culmination of the last two worry-laden months, combined with the strange experience of assimilating that this did happen, that it is/was cancer, and that it is I this time throwing down the proverbial gauntlet. Lots to ponder, and I hope that, just as I work with others, I can gently counsel myself through these myriad emotions that are the fallout of an experience such as this. Thanks so much for this active, friendly forum! I declare this to be the day of taking some small steps outside this shell of woe that envelops me. Yours, Joana
  4. Perhaps this exposes my dunder-brained incapacity with computers, but where do I find the responses that I received in the last few days? They are not all here, and I do not see how to access them. Thanks! ~ joana
  5. Lady Rose Blade: May we walk forward in victory! Glad to meet you. Cheers, ~ joana
  6. Thank you, Susan and Lou T. Your words are uplifting to me, and I will look at the associated links you've provided, Lou. Appreciating it all enormously. Sadly, I cannot work a regular job, as I am disabled from previous cancers and their treatments. Fie! I have out on my thinking cap, though. I am not defeated yet and plan to be a very active and engaged participant in my own treatment and hoped-for healing! ❤️ Cheers, joana
  7. Dear Judy M2, Lexie Cat, Roz, Bridget O, and Tom G: I am humbled and touched by your thoughtful, and kind answers, that help me tremendously as I face this new challenge. THANK YOU! It is a time of great anxiety as I am also facing economic devastation due to illness (second opinions are not a possibility for me, alas), and I am not quite sure how this is going to end for me. I am a counselor for children who have cancer, now work with adults, also and co-facilitate a large cancer support group (I do not work a regular job any longer, but usually take a few cases referred to me). I mention this because of the irony of now being on the other side of the equation, and having a hard time accessing the many calming and practical things that I, "counselor Joana" share with others. My upset comes from the fact that this is major cancer #3, and well, one wonders how much more one has to give. It is hard to see a promising horizon when soon, we won't be able to pay the rent; that cruel reality bores itself into my fretting brain relentlessly. We are in the middle of a complicated move (overseas), and I am living among boxes and mess. I am frantically working on ideas to help us financially, and of course there will be some type of funding efforts realized. I thought about trying to do regular work again, but it's clear that I am not up to the task. Alas. I have compiled a huge list of entities that offer financial help to patients, and will soon get going on familiarizing myself with those. Please pardon my broaching the touchy subject of finances. I thought about omitting it, but it is something that vastly colors my spirit and outlook, and as such is a significant part of my battle story. I am not soliciting funds here, and would never do such a thing! Should this mention violate posting standards please advise, and I will gladly delete. I am being as philosophical as I can about it all. One question looms ever pertinent: Who do I want to be as I proceed with this fight? We all entertain an idea of the person we would like to be, and I am looking at that as I near the proverbial gauntlet. I desire the gift that so many cancer-stricken children boast: a grace and resignation to what IS, and an honest battle rendered. I do not feel that grace...not yet. I am squirmy and bratty still, like a spoiled child, wanting to simply crumple in a comfy brat corner and wail, "Wahhhhhhhhhh!" Time doesn't allow it, however, and I stumble forth. On a fun note, I found several writing contests, and am going to submit a few pieces. You never know, do you!? One of them is a poetry contest covering the theme of pain. Interestingly, they ask for something "amusing," or self-effacing. Hmmmmm. Interesting take on pain, and that will be fun to mess around with. One thing that I always tell patients is that hope is NEVER lost. I have seen the most severe, daunting cases of cancer turn themselves around unexpectedly. I have seen "miraculous" healings and joyous, puzzling returns to "NED" status. I have seen the awe-striking, surprising, and sometimes confounding ability -- and success-- of our amazing bodies to work for us as hard as they can for us. Now, I work to assimilate this truth that I often address with others. To me, a huge factor in this fight is one's philosophical standpoint...the carving-out our "illness personas," if you will, and (I believe that) the choices we make around who that person is going to be directly influence our odds and progress. It can be a delicate path to walk, as simultaneously, we are not to feel "guilty" for not healing. I am aiming at self-compassion (I am merciless with myself) and yearned-for faith, buoyed by kindnesses such as your generous offerings to me, of encouragement and help. Haha -- I am going to ask one favor, and that is that I am very computer-challenged, and I am not sure how to access THIS page again. Silly one that I am, I have purposely not closed the webpage, as I am afraid that I will not find it again! Is there a mail portal that apprises us of when there is a response to us? I want to make sure that I remain "plugged in" top you here! I will copy this link and cruise a bit to see if I can figure it out, but I can be pretty thick vis-a-vis computer stuff! With huge appreciation, I bid you all a lovely rest of your weekends, and look forward to continuing this conversation. ❤️ joana
  8. Thank you so much for putting this together! I find it interesting -- I am a counselor for children and adults with cancer, and many of the things that you have advised are the same things I regularly write to patients and their families. Now, though, the shoe is (once again, SIGH) on the other foot, and this time, with major cancer #3, I need to truly learn to practice what I preach. I am an infamous "over-doer" and suffer from the common long-term patient's inclination to over-do when feeling slightly better. That, I believe will be my hardest and most important job post-surgery. Thank you for guiding me here; I needed to see this information aimed at ME, not the other way around this time. Much, much appreciated! I am happy to have found and joined you here. Thank you. I send warm greetings from the coastal forests of northern California. ❤️ ~ joana
  9. Hi all, I am new here, and have been diagnosed with stage I adenocarcinoma in left upper lung. Lobectomy Oct. 19th. I am very, very, very terrified. This is my third major cancer and if one counts squamous cell and melanoma skin cancers, it is my fifth cancer. I am terrified to have faith in surgery alone, and know that in many cases some chemo (perhaps radiation? I don't know) post surgery is given as a sort of a security measure. My surgeon doesn't feel this is necessary. I am interested in people's input here. I am so frightened. I work professionally in the cancer world, and know that it is an insidious, traitorous affliction. Your thoughts appreciated! ❤️ Joana
  10. Hi, Sigh, I am a young 65-year-old Joana (pronounced "joe-wanna"), from the coastal forests of northern California. I have just been diagnosed with stage I adenocarcinoma -- left upper lung. I will have a lobectomy and lymph nodes removal on October 19th, and I am terrified of the implications of this cancer. Professionally, I work with children and adults who have cancer, so I intimately know the cancer world from both sides: as a counselor, and as a patient. This is my third major cancer (bladder colon, preceding this) and if you count melanoma and squamous cell skin cancers, it is my fifth cancer. I am terrified and deeply depressed, as we do not have the financial means to go forward in a way that will be helpful to me. I am steeped in grief, and waiting to exit the tailspin of those words "Yes, it's cancer." I am desperately unhappy and feel hopeless. Do I know better than to have this perspective? Of course I do. Nevertheless, it is there, the anguish, and economic worry doesn't allow me to concentrate on healing. I'm glad to be here, and looking forward to interfacing with others who are also taking this daunting walk. Although the surgeon proclaims that this is a "surgical cure," I am so aware of cancer's insidious ability to be hiding in the tiniest of manners, and so I am going to ask for adjuvant chemo (NOT that I want it, but I feel that it is a little bit of a help; sort of a "clean up" chemo to get any tiny little cells). I hope that after reviewing my records, they also think that this is indicated. I am in a bad place, deeply sorrowful and heavy. (All that said, I DO have to have laughs and smiles every day. Without that, what's it all worth!?) Cheers, and thank you for the welcome, Joana
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