Guest Phyllis Posted June 26, 2004 Share Posted June 26, 2004 I am sorry i have been in the hospital since last Friday at Chicago. I started suctioning out blood clots from my lungs the swelling around my port got bad. The blood vessels were collapsing and turning black. They put me in ER all day because there were no beds even though they tried. All of these gang members hanging out. Just residents and interns I couldn't tell. I couldn't hardly see a nurse but nice doctors. Well intentioned. Until one of them told me I had a tumor on my spine. What tumor on my spine. I had just had a CT scan May 25th. Everything stable. Lots of options. Knew I had to get my port out. I was going to start Xeloda, gemzar, navelbine, and C225. Did MRI tumor 1.35 small right? Surgeon said he hoped it would grow awaay from the spine. Dr.s in MS did not think I was over radiated. NOw everyone saying overradiated. Put me in with a woman from the ghetto who was horrible. loud listented to the tv 24seven, dirty scary. She was doped up on morphine. no beds. Some good nurses. Too many doctors saying too much tumor and just looking at me. no reassurance. total nightmare. did small procedure with angioplasty on monday morning and removed some fluid. sent home tues. my insistence. swelling came back and i went back Thurs. Was in cold ER all day with just a sandwich, My sister brought me a piece of cake like that would solve everything. Doctors just would look at me and say too much tumor. So much tumor. I was walking around. I could breathe. I felt ok. Took me to radiology Frid at 8:00. Concerned about whether my lungs would need suctioning. How should I know? Had to restart IV. I told them in ER not to put IV on my bone Of course it wouldn't work. So much pain. Just tylenol. Procedure took til 1:00. So much tumor. Put 6 in stent in and removed port finally. Have to go back I guess to be told I am dying on Tues. Don't know why I have to go back. Don't see any point. I am so angry. I hate everythng right now. Sorry about post. Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted June 26, 2004 Share Posted June 26, 2004 Phyllis, Sorry you have had such a rough time of it. I really don't know what to say that will help. Do you have relatives/friends that are helping you get through this bad time? Now is when you really need them to help with meals, etc. if at all possible. You need more than a sandwich all day. You need close, in person support in addition to our support here. I'm not very good at this whole board thing, but I will be praying for you to have physical healing, mental and spiritual peace and comfort. Take care and hang in there. Don't give up. Don't let the doctors give up. There are still more drugs, more treatments, etc. We are with you! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 26, 2004 Share Posted June 26, 2004 Phyllis, I'm so sorry to hear all the problems your having.I guess it doesn't matter where in the country your being treated there are always so many horrible experiances for people.I've had my small share also here in Pa.I hope the dr.s will find a way to make you more comfortable and figure out a way to get you up &running again. Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted June 26, 2004 Share Posted June 26, 2004 ((((((((((Phyliss))))))))))) Darn doctors. Darn nurses. Gosh bless darn stupid dirty roommate patients. I wish I could give you some comfort. Don't give up, okay. Please. You're handling this better than I would. I would have grabbed a doctor, put a knife to his throat and said, "Now do you understand what it's like to be scared!" I wish I knew a magical way to make things better for you. All I can do is listen. Please scream any time you want to. You can email me if you'd like. Cat Quote Link to comment Share on other sites More sharing options...
tess Posted June 26, 2004 Share Posted June 26, 2004 I am so sad that you had to go thru that in the hospital. Sounds like a hell hole instead of a hospital. I sure hope you have someone to help you!? I am praying for you! Why can't they give you some pain meds? Like morphine, oxycontin or something? Quote Link to comment Share on other sites More sharing options...
Snowflake Posted June 26, 2004 Share Posted June 26, 2004 Phyllis, Find a counselor - NOW! Find a professional to talk to, someone to help you through the mental part of this... Not suggesting drugs, just someone to talk to. Your stay in the hospital sounds absolutely horrible. Another reason to find someone to talk to... Your sister doesn't seem to "get it" - obviously not "someone to talk to"...talk to a professional. I'm not suggesting anything I haven't done. I see my counselor at least every three weeks, more often if "The Voice" has become active. She can't "fix it" but it helps me to cope, to talk to someone that says I'm NOT crazy, that I'm doing well with all that is going on in my life and still being "sane" enough to make it through another day. I spoke with a neuropsychologist this week, had to fill him in on medical history, so when he read that, he asked about counseling - I told him I'd been going since I found out. Doc said that was a good thing, that many people think it's "bad" to find someone to talk to, that it's weak in some way but it's really the strong thing to do...to admit that it's too much and you need help. Phyllis, I hope that your life starts to get sunnier! Enough rain, time for the sunshine and the warmth... xxoo, Becky Quote Link to comment Share on other sites More sharing options...
hobored Posted June 27, 2004 Share Posted June 27, 2004 So sorry about your horrible experience. Know that you are not alone...you have all of us thinking of you . Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted June 27, 2004 Share Posted June 27, 2004 Sorry to hear you were in the hospital Phyllis. Hope they can help you feel better. Prayers and best wishes! Sharon Quote Link to comment Share on other sites More sharing options...
chloesmom Posted June 27, 2004 Share Posted June 27, 2004 I too saw a therapist for the past year. Of course she isn't going to tell you things you don't already know, but it's good to be able to tell someone what's going on, and better yet, someone who doesn't have an emotional investment in you. You also need someone to tell you that it's ok to be feeling the way you do. Please consider this.....it may have saved my emotional life. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted June 27, 2004 Share Posted June 27, 2004 I am so sorry about that horrible experience. Please do not let those morons demoralize you. You have the right to keep fighting. We are here for you. Lisa Quote Link to comment Share on other sites More sharing options...
norme Posted June 27, 2004 Share Posted June 27, 2004 Phyllis, when are you suppose to have the RFA? I would call the onc and try and get it now. It can't do any worse to you but could save you time. I hear it is a good thing. Wish I lived close to you, I would be your support, the shoulder you need..... Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted June 27, 2004 Share Posted June 27, 2004 Phyllis, You have been through "Hell and back", but you are still here! I wish that I could help you in some way. I am so sorry that you are going through this. Call the American Cancer Society and Hospice for some help. Many people think that Hospice is the last stop, but there are many who only use them for a brief while. Let me know if I can do anything at all. Cheryl Quote Link to comment Share on other sites More sharing options...
TAnn Posted June 27, 2004 Share Posted June 27, 2004 Phyllis, I am so sorry to hear what a horrible time you have been having. That hospital experience sounds like a nightmare. I don't blame you for being traumatized. Let your oncologist know about how you were treated in the ER. Does he work out of the same hospital? I hope and pray for you to have some good news and that you can still do the RFA treatment. Please do not hesitate to let us know if we can be of any help. TAnn Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 28, 2004 Share Posted June 28, 2004 What an experience! I'm glad you got through it and I hope nothing like that ever happens again. Wow. Glad you are back. Margaret Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted June 28, 2004 Share Posted June 28, 2004 Phyllis, Wow. The hospital trip from HE double hockey sticks..... Lousy Lousy experience. No pain meds, doctors being insensitive... I'm glad you're out of there.... You do need some help, and some close in advocacy, as well as somebody to vent to so you don't blow a gasket. I'm with Becky -- doesn't hurt to find counseling, knowing when to say I can't cope any more is sometimes the bravest thing to do. Whatever we can do to support you, hon, just yell.... I'm very sorry you had such a horrible time. XOXOXOXOX Prayers, always.. MaryAnn Quote Link to comment Share on other sites More sharing options...
CynMs Posted July 4, 2004 Share Posted July 4, 2004 Phyliss, I am so sorry about your ordeal. I was wondering why I not received an email from you. I did not realize your sister lived so close. PLEASE...tell the doctors you need pain management. That is one portion of the Patient Bill Of Rights, the right to be pain free. It is so hard to be an advocate for ourselves when we feel so sick. I wish I could do something for you. Would coming back to Mississippu make things easier for you? Please tell me if there is anything i can do for you.. Love and prayers Cynthia Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted July 4, 2004 Share Posted July 4, 2004 Phyllis, What a nightmare you have been through. I do hope you never have to go back to that emergency room. I agree, get a counselor and insist on pain relief. You are in my prayers. Quote Link to comment Share on other sites More sharing options...
Guest Phyllis Posted July 4, 2004 Share Posted July 4, 2004 You are all so capable of making me feel better. I swear I do not have anything against counselors. But right now I don't think I have a lot of time and I have been to counselors good and bad and to get an idiot right now would do more damage than good. I did go home. I went back to see my onc last Tues. He is trying. He did talk the radiologist into doing one more procedure to try to open the necrotic blood vessels. They did try to do another stent in the back of my neck which is what I need. But the tumor in the right upper apex of my right lung is I guess maybe instead of a 3.3 now probably a 4. The cancer grew a lot during June. I also have that stupid tumor next to my spine which apparently came out of nowhere. It is probably 1.5. I don't ask anymore. RFA is now totally out of the question and I don't have the strength to fly back to MS. Even though I liked the onc down there better. Sorry for the long post, but this nightmare doesn't end. The vascular surgeon team considered vascular surgery but until they shrink the tumor they will not be able to get a stent in. They keep saying I had my max on radiation. My lungs were never radiated. It was my esophagus and my neck area. The rfa docs did not feel that I was overradiated. That was not their problem. Just too much tumor. Thurs. was horrible. The docs decided that they would leave me alone so I could have one night with no bad news. I was soooo happy. Just knock me out for a while give me a break. The main vascular surgeon came in that night to cheerfully inform me that she could not help me. Apparently, everyone was trying to leave town on Friday for the fourth. However, she did assure me that on Frid. we would finally look at the wax in my ears that had been there for three weeks and maybe take it out like I have been asking so I could hear and to relieve some of the pressure. By the way I had a great roommate. She was only 25 and has sickly cell. Very sick but she and I were perfect for each other. Another neat freak. Friday morning comes and I kid you not the only people I see are two clueless med students who do not know how to remove the big ball of wax in my ears. We call my ear nose and throat doctor at home. He is sooo upset. He says he has surgery all day and was covering for 4 other docs. He went to school at this place. He said that there was a clinic across the street in the other part of the hospital that all they did was remove ear wax. The docs refused to send me over there. They made it clear that they did not want to do anything that might prolong my life. They felt that the pressure in my ear was from the tumor and they would not treat it. They gave me eardrops. They wanted me out of there yesterday. I had to check out and travel 40 mis. on a holiday weekend to my local hospital to find a great nurse and doc. The nurse spent almost two hours removing the wax out of my ears so I could hear and made the headache go away. I also have the vena cava thing and my blood won't flow. They sent me home with Lovenox and a nurse came one morning. No one will tell me should I be off my feet. My face is swollen to the point that it is like a cartoon. The docs won't say that I should stay off my feet. What makes the swelling worse better. They have totally cut me off. Long enough post. Quote Link to comment Share on other sites More sharing options...
Guest Phyllis Posted July 4, 2004 Share Posted July 4, 2004 You are all so capable of making me feel better. I swear I do not have anything against counselors. But right now I don't think I have a lot of time and I have been to counselors good and bad and to get an idiot right now would do more damage than good. I did go home. I went back to see my onc last Tues. He is trying. He did talk the radiologist into doing one more procedure to try to open the necrotic blood vessels. They did try to do another stent in the back of my neck which is what I need. But the tumor in the right upper apex of my right lung is I guess maybe instead of a 3.3 now probably a 4. The cancer grew a lot during June. I also have that stupid tumor next to my spine which apparently came out of nowhere. It is probably 1.5. I don't ask anymore. RFA is now totally out of the question and I don't have the strength to fly back to MS. Even though I liked the onc down there better. Sorry for the long post, but this nightmare doesn't end. The vascular surgeon team considered vascular surgery but until they shrink the tumor they will not be able to get a stent in. They keep saying I had my max on radiation. My lungs were never radiated. It was my esophagus and my neck area. The rfa docs did not feel that I was overradiated. That was not their problem. Just too much tumor. Thurs. was horrible. The docs decided that they would leave me alone so I could have one night with no bad news. I was soooo happy. Just knock me out for a while give me a break. The main vascular surgeon came in that night to cheerfully inform me that she could not help me. Apparently, everyone was trying to leave town on Friday for the fourth. However, she did assure me that on Frid. we would finally look at the wax in my ears that had been there for three weeks and maybe take it out like I have been asking so I could hear and to relieve some of the pressure. By the way I had a great roommate. She was only 25 and has sickly cell. Very sick but she and I were perfect for each other. Another neat freak. Friday morning comes and I kid you not the only people I see are two clueless med students who do not know how to remove the big ball of wax in my ears. We call my ear nose and throat doctor at home. He is sooo upset. He says he has surgery all day and was covering for 4 other docs. He went to school at this place. He said that there was a clinic across the street in the other part of the hospital that all they did was remove ear wax. The docs refused to send me over there. They made it clear that they did not want to do anything that might prolong my life. They felt that the pressure in my ear was from the tumor and they would not treat it. They gave me eardrops. They wanted me out of there yesterday. I had to check out and travel 40 mis. on a holiday weekend to my local hospital to find a great nurse and doc. The nurse spent almost two hours removing the wax out of my ears so I could hear and made the headache go away. I also have the vena cava thing and my blood won't flow. They sent me home with Lovenox and a nurse came one morning. No one will tell me should I be off my feet. My face is swollen to the point that it is like a cartoon. The docs won't say that I should stay off my feet. What makes the swelling worse better. They have totally cut me off. Long enough post. Love you all. I will try to post again. Quote Link to comment Share on other sites More sharing options...
paddy Posted July 4, 2004 Share Posted July 4, 2004 Dear Phyllis, So sorry to hear you are going through all this strife. What kind of "Hospital" is this anyway!!! I was glad to hear that you at least have your daughter and sister with you, you shouldn't go through this physically alone. I am sure we are all with you in spirit and I personally am sending hugs and positive thoughts your way. Paddy Quote Link to comment Share on other sites More sharing options...
Fall54 Posted July 5, 2004 Share Posted July 5, 2004 Dear Phyllis, What a horrible experience. I wish there was some way I could help. That helpless feeling creeps in again. Please know you are in prayers God Bless You, Jane Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 5, 2004 Share Posted July 5, 2004 Wow! Phyllis, I am just speechless. You have had such a horrible time. Plus, I read your profile, and you have been fighting for quite a long time, and now this. I'm so sorry and wish there was something I could do for you. Are you daughter and sister helping you out? Please let us know if they are. We would all feel a lot better knowing somebody is looking after you. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted July 5, 2004 Share Posted July 5, 2004 Phyllis, Just before I posted I prayed for you. I'm sending up prayers as I type. (I type so slow, it's possible to get in a prayer between words) ------ There. I stopped and prayed again. ------ Again. ------- I can't stop thinking about you and how brave you are and how much you need a hug from God. --------- Again. I can't stop thinking about you or praying for you. Cat Quote Link to comment Share on other sites More sharing options...
ginnyde Posted July 5, 2004 Share Posted July 5, 2004 Dear Phyllis, I get so very mad when I read about my 'cyber' friends not only having to fight this dreadful disease but also having the fight the doctors whose job I thought was to help us. Maybe I am confused. I wish you nothing but good thoughts and some relief from all you have been going through. Now that the holiday is over, you can get the care and treatments you need and deserve. Quote Link to comment Share on other sites More sharing options...
Octobergrace Posted July 6, 2004 Share Posted July 6, 2004 I am thinking of you and send a prayer your way; you have truly been living a nightmare made worse by the very people who should want to help make your way easier...you are so good at describing your experience through your words; there is a great deal that drs. and nurses could learn about the experience of living through and dealing with the drama and crises of cancer by reading your words. It is clear that you (as many in this fellowship) have a strong core that carries and sustains you when your body is struggling so hard. Maybe your words are your best therapy. Many blessings. PS: I understand your apprehension about finding a good therapist. Once, I worked with a prominent child psychiatrist who told me, "No therapy is better than bad therapy." It's true. Quote Link to comment Share on other sites More sharing options...
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