How frustrating!! Is this a hospital you use often? Anyone in authority you can all talk to about HCp and what you expect if there's a next time?
- Springfield, MA
- Member Since Jan 2013
Their Diagnoses (2)
- Patient: Small Cell, Lung Cancer
- Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 66, Stage Extensive, SIADH: No
- View this journey (14 Experiences)
- Patient: Lung Cancer
- Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 4 years ago, Female, Age: 66, Stage Extensive
- View this journey (0 Experiences)
MRoadrunner shared an experience
Oh No (Problem with doctor): I found myself sick again with vague complaints. Over the phone my oncologist arranged to have me preadmitted to the ER at 5pm if there wa no asking my daughter for a ride to the hospital, for the 1st time I didn't feel it safe to drive myself. I always felt better knowing my "getaway car" was parked in Valet parking. Good decision because I just made it out of the ER when I went into acute respiratory failure and put back on Bi Pap which strangles me and appears to not work for everybody. They inserted a chest tube to suction. My daughter and my granddaughter switched shifts at the hospital due to work schedules and they are both listed as health care proxy. All of a sudden, as soon as my daughter left, they started to started to exert authority ,I believe due to her age (she's 22). I tried to remove the Bi Pap mask because I couldn't breathe and my SAo2 was spiraling downward. They (Doctor M) told my granddaughter that I had to be on the mask. She stood up to them but ended up in tears because they were not allowing her to do her job as HCP. My daughter had to leave her job to come back and put them on notice as to what is not acceptable and they were both knowledgeable with responsibilities to me. In addition, I have a DNR order. They quickly took off the Bi Pap and moved my room. It was a little hairy for about an hour or so, but I said I was done fighting. My SAo2 started to come up into the high 80-low 90s. I continued to improve and was ready to be discharged home when I was getting ready for bed and I felt drainage at the chest tube site; it literally fell apart in my fingers. A respiratory therapist was called immediately and she said there were problems when inserting the CT. The oncologist supervising felt the need to "makeshift" the tube by cutting it and taping it together. Both RT's tried to tell the Onc that is not the acceptable way to do it. The onc told me that they put it in wrong. He attempted to lie and cover his XXX, throwing these 2 staff members under the bus. The Onc came in to check on the tube and said he could probably fix it. When he realized that I saw it, he tried to cut it in pieces. I picked up the pieces and slipped them into my purse. He stated "oh no, you can't keep that, it's junk" I told him that I do want to keep that...for a souvenir. I think at that moment he changed his demeanor and scheduled me for another CT insertion the next morning. I was discharged home after 8 days.
MRoadrunner wrote on Blackmama's wall
You have come to the right place for support and information. If you have questions, post them. I was diagnosed with extensive SCLC last August and have had chemo, PCI and then, when the tumor recurred, radiation. If I can be of any help, please don't hesitate to ask. I call them speedbumps of life. A positive attitude helps a lot; we can beat this!
MRoadrunner wrote on cratyangel's wall
I'm sorry for what you're going through! I'm glad you joined with What Next because I have found a lot of support from the people on here, and any questions you might have can be answered by someone going through a similar process. I also have SCLC and started treatment within the week after diagnosis; I was already hospitalized which made it easier to start while inpatient. Feel free to contact me if I can be of any help. Stay strong!
MRoadrunner wrote on EllasDaddy's wall
You are so right about the "herbal medicine", I've been on morphine and percocet for months and my appetite has hit the can again. I still have some breakthrough pain and MJ is the only thing that will help with both symptoms. I hate to take more than 2 percocet a day due to constipation. The morphine twice a day is extended release but doesn't last as long as it should. On the other hand, my doc increased the dose and I thought it was too much for me so I went back to the lower dose. I think we're living in a parallel universe. I am still dizzy after the PCI and my hair is growing back everywhere but on my head. In retrospect, my "expiration date" was supposed to be 8/26/12 so every day is a gift. Still kicking cancer's XXX!
MRoadrunner wrote on Gidget1978's wall
My heart goes out to you! You certainly have been through a lot, yet here you are and still fighting. We have similar journeys except that mine was caught fairly early, considering how fast the SCLC grows. I had prophylactic brain irradiation (PCI) after chemo. The tumor recurred so then I had the lung radiation. I experienced the same symptoms as you did with the chemo and radiation but keep in mind, those symptoms will go away. There were days when I could barely get out of bed. I can't advise you regarding the spine, didn't have that. It's a good thing you joined "What Next" because it's a great source of support and someone on here can give you any answers you're looking for. Eat with nutrition in mind, drink plenty of fluids and get a little exercise daily when able. A good state of mind goes a long way! Sending healing thoughts to you.
I personally would not feel like I'm wasting time, as long as I'm fighting it and chasing those tumors around. I pretty much ask the doctor right out, "So, what's next"? "What do you think my prognosis is at this point?" You deserve those answers, but remember they themselves don't always know. Keep the faith and don't ever give up, as long as you have the spirit to fight this off!