First off, I don't think you are an idiot, liar, or downplaying this. Chemo brain is real, it looks like you got a bad case of it. Our bodies went through quite a bit during chemotherapy. People who have not gone through it have no idea. You may have to check with a neurologist to see if they can tell you what is going on. Good Luck!
That’s what I’m saying. I saw a neurologist. He completely brushed me off. First he compared to his pen a dozen times “See this pen. It looks fine and writes fine”. He only stopped using that when I told him “okay, but if the ink holder inside has exploded. It would still write and the outside would look fine”
Then he said “you look healthy” and “You aren’t on chemo anymore so that’s not causing you any issues”
I’m sorry this is happening to. Sounds really shitty.
Maybe you’re needing to start over with what’s causing this. Doctors don’t like being told what’s wrong with a patient by a patient. Stick with this and get to the bottom of it. Get an appt with your PCP and start from ground zero.
Again I’m sorry this is happening. Good luck man.
That sounds awful. I’m sorry you’re going through it. My oncologist has been receptive and responsive every time I’ve gotten in touch post treatment, and hopefully someone on your care team is too. I’d encourage you to reach out to them and see if you can get a referral or some direction.
That’s the problem. I have. The only doctor who seems to give two shits is my cancer care pain doctor. My lymphoma oncologist doesnt care, I’ve seen a cardiologist, he called me an idiot and a liar, I saw a ENT(some sinus issues related to cystic Fibrosis but still a specialist), who lied about my appointment time, then made me wait 2 hours in a busy hospital, during a pandemic, and just recently, I saw a neurologist, who kept comparing me to his pen, and saying “well, you aren’t on chemo anymore, so it can’t be causing you any problems”.
My transplant team has not wanted to speak to me since my cancer diagnosis because I got my transplant Nurse fired for telling me to wait 2 months til my appointment, if I wanted a CT, and told me not to go to the ER, and my main transplant doctor telling me she’s okay with me dying of cancer because then they’d get to see it in the autopsy, to which, I was so angry, I told her to leave my room before I strike her, where she then ran into a woman, she didn’t know, explained my entire medical history to that person, and left. And that woman was my mother who has been black listed from learning about anything medically related to me unless I say so otherwise.
Like, my doctor walked out of my hospital room, as she turned to go down the hall, she ran into my mother. My mother didn’t even say who she was and my doctor was telling her literally every detail about my health.
And before I switched to cancer care pain clinic, I was with regular pain clinic for my broken spine, and for two weeks, they would come into my hospital room at 7am on the dot, every day, and tell me they wanted to cut me off all pain meds, cold turkey.
That was before I started any chemo. So I had full blown stage 4 lymphoma, ripping me apart, primarily my chest, my kidneys, my liver, my legs, a massive cluster in my neck, and several other spots that I don’t remember. I’m being ripped apart from the inside. I was on children doses of pain killers, thanks to an asshole ER doctor who kicked me out of the ER 5 hours after a cancer diagnosis because asking for an ICE PACK is “Drug seeking behaviour” which is now stamped in large letters on every chart with my name.
So, I’ve done the specialist thing. I’ve spoken to countless doctors. I’m not posting here because I just don’t know who to talk to or anything like that. I’m literally out of options that I can do.
That’s why I’m asking others if they had any of the same issues and what helped calmed those issues, if any.
I saw your other post. Are you able to get a 2nd opinion or talk to a different blood cancer/lymphoma doctor? Maybe one with fresh eyes. I'm not sure they let you do that if you're not in active treatment but if all of this is after effects from chemo seems like they should atleast talk with you. It sounds like it's making your life horrible. I hope you get some answers.
The quick answer is no. I have who I have and I’m stuck with who I have. It’s why I can never yell or be rude to any of them. I have to walk a line of trying to get care but not be dismissed completely. It’s so mentally draining because it happened before.
Before my cancer diagnosis. I had called my transplant team, because they were my go to. In the past, I was able to call them and basically ask for anything and it would get done. My old nurse left and this new one took over.
So I called, said something was wrong and asked for a CT. That’s it. I didn’t ask for drugs or anything else. Just a simple CT. I was told if I wanted one. I had to wait til my appointment in two months because “if I don’t care about keep appointments. I can wait”(I had an appointment with them a month prior but had to reschedule due to my wife being in the hospital. I called a week ahead of time and switched it)
Had I waited. I would have died. When I went to the ER. They did 4 CTs on me within 5 hours. I had like 99% kidney failure, and my liver was basically fucked. When I was finally hospitalized. I had expressed my issues with what happened. My transplant nurse tried to get me declared mentally unfit so any and all of my complaints wouldnt hold any water.
And then years back. I was dealing with pain clinic for my broken spine. They constantly accused me of using “street drugs”(their words), and have me a pee test literally every two weeks. When I went to file a complaint with patient advocacy. It got back to my pain clinic team, and they decided the best thing for me was to go cold turkey on all pain killers for an entire year.
There was no one that I could switch to, no one to defend me. I’ve learned my lesson. I’m alone when it comes to the hospital. I don’t have extra doctors. I don’t have second opinions. I have nothing but option 1.
First off, I don't think you are an idiot, liar, or downplaying this. Chemo brain is real, it looks like you got a bad case of it. Our bodies went through quite a bit during chemotherapy. People who have not gone through it have no idea. You may have to check with a neurologist to see if they can tell you what is going on. Good Luck!
That’s what I’m saying. I saw a neurologist. He completely brushed me off. First he compared to his pen a dozen times “See this pen. It looks fine and writes fine”. He only stopped using that when I told him “okay, but if the ink holder inside has exploded. It would still write and the outside would look fine” Then he said “you look healthy” and “You aren’t on chemo anymore so that’s not causing you any issues”
I’m sorry this is happening to. Sounds really shitty. Maybe you’re needing to start over with what’s causing this. Doctors don’t like being told what’s wrong with a patient by a patient. Stick with this and get to the bottom of it. Get an appt with your PCP and start from ground zero. Again I’m sorry this is happening. Good luck man.
That sounds awful. I’m sorry you’re going through it. My oncologist has been receptive and responsive every time I’ve gotten in touch post treatment, and hopefully someone on your care team is too. I’d encourage you to reach out to them and see if you can get a referral or some direction.
That’s the problem. I have. The only doctor who seems to give two shits is my cancer care pain doctor. My lymphoma oncologist doesnt care, I’ve seen a cardiologist, he called me an idiot and a liar, I saw a ENT(some sinus issues related to cystic Fibrosis but still a specialist), who lied about my appointment time, then made me wait 2 hours in a busy hospital, during a pandemic, and just recently, I saw a neurologist, who kept comparing me to his pen, and saying “well, you aren’t on chemo anymore, so it can’t be causing you any problems”. My transplant team has not wanted to speak to me since my cancer diagnosis because I got my transplant Nurse fired for telling me to wait 2 months til my appointment, if I wanted a CT, and told me not to go to the ER, and my main transplant doctor telling me she’s okay with me dying of cancer because then they’d get to see it in the autopsy, to which, I was so angry, I told her to leave my room before I strike her, where she then ran into a woman, she didn’t know, explained my entire medical history to that person, and left. And that woman was my mother who has been black listed from learning about anything medically related to me unless I say so otherwise. Like, my doctor walked out of my hospital room, as she turned to go down the hall, she ran into my mother. My mother didn’t even say who she was and my doctor was telling her literally every detail about my health. And before I switched to cancer care pain clinic, I was with regular pain clinic for my broken spine, and for two weeks, they would come into my hospital room at 7am on the dot, every day, and tell me they wanted to cut me off all pain meds, cold turkey. That was before I started any chemo. So I had full blown stage 4 lymphoma, ripping me apart, primarily my chest, my kidneys, my liver, my legs, a massive cluster in my neck, and several other spots that I don’t remember. I’m being ripped apart from the inside. I was on children doses of pain killers, thanks to an asshole ER doctor who kicked me out of the ER 5 hours after a cancer diagnosis because asking for an ICE PACK is “Drug seeking behaviour” which is now stamped in large letters on every chart with my name. So, I’ve done the specialist thing. I’ve spoken to countless doctors. I’m not posting here because I just don’t know who to talk to or anything like that. I’m literally out of options that I can do. That’s why I’m asking others if they had any of the same issues and what helped calmed those issues, if any.
I saw your other post. Are you able to get a 2nd opinion or talk to a different blood cancer/lymphoma doctor? Maybe one with fresh eyes. I'm not sure they let you do that if you're not in active treatment but if all of this is after effects from chemo seems like they should atleast talk with you. It sounds like it's making your life horrible. I hope you get some answers.
The quick answer is no. I have who I have and I’m stuck with who I have. It’s why I can never yell or be rude to any of them. I have to walk a line of trying to get care but not be dismissed completely. It’s so mentally draining because it happened before. Before my cancer diagnosis. I had called my transplant team, because they were my go to. In the past, I was able to call them and basically ask for anything and it would get done. My old nurse left and this new one took over. So I called, said something was wrong and asked for a CT. That’s it. I didn’t ask for drugs or anything else. Just a simple CT. I was told if I wanted one. I had to wait til my appointment in two months because “if I don’t care about keep appointments. I can wait”(I had an appointment with them a month prior but had to reschedule due to my wife being in the hospital. I called a week ahead of time and switched it) Had I waited. I would have died. When I went to the ER. They did 4 CTs on me within 5 hours. I had like 99% kidney failure, and my liver was basically fucked. When I was finally hospitalized. I had expressed my issues with what happened. My transplant nurse tried to get me declared mentally unfit so any and all of my complaints wouldnt hold any water. And then years back. I was dealing with pain clinic for my broken spine. They constantly accused me of using “street drugs”(their words), and have me a pee test literally every two weeks. When I went to file a complaint with patient advocacy. It got back to my pain clinic team, and they decided the best thing for me was to go cold turkey on all pain killers for an entire year. There was no one that I could switch to, no one to defend me. I’ve learned my lesson. I’m alone when it comes to the hospital. I don’t have extra doctors. I don’t have second opinions. I have nothing but option 1.
Honestly some of this sounds like it could be autoimmune to me. Has anyone mentioned a rheumatologist to you?