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Manapart

Annabelle41415's picture
Annabelle41415
Posts: 5793
Joined: Feb 2009

I'm sure that you had your oncologist appointment today and wondered how it went.  Hoping that you discussed your PTSD and other issues you were dealing with.  I'm hoping that you got some answers.  Just let us know when you get a chance.

Kim

manapart's picture
manapart
Posts: 47
Joined: Feb 2019

for remembering, and thinking of me. I cant really talk about it right now. My emotions are raw and im dont want to bleed my feelings out on the forum right now. I just need time to digest everything. All I can say is it was not a pleasant experience with the ongcologist. He lacked empathy. The news obviously was not good but not all bad either. But a little worse than I expected. But I got more answers and have a general sense of where we need to go. Thanks again and please please everyone keep me in your prayers. 

Twinzma
Posts: 148
Joined: Jan 2018

I think that lack of empaty is a required course in med school, I have yet to find a single doctor with any! You are in my prayers, have been from the day you first posted. I haven't been responding much, it's been hectic and I am in a bit of a funk...But prayers I do frequently and I've got your back with plenty of them! Take it easy, get some rest.....

JanJan63's picture
JanJan63
Posts: 2169
Joined: Sep 2014

I'm worried about you, too, Rod. Please let us know what happened and what was said and offered. Is this a new oncologist or one you saw before? 

Empathy is something we all need from the people who are in charge of our health but not all doctors have it, that's for sure. That being said, I changed oncologists because mine was too nice. She did not make me feel confident or comfortable. So for me, somewhere in the middle is just right. One time my onc was away and she had a replacement doctor who was an onc and he seemed to feel sorry for me, really sad. It didn't make me feel that he cared, it made me feel like he knew something I didn't and felt really bad about it. I didn't like that at all. I felt much better when I saw her again and nothing new had come up.

I'm glad you have more information now, Rod. Knowledge is power and you can make decisions based on what you know rather than wondering and worrying. 

Hugs!

Jan

Phoenix_66's picture
Phoenix_66
Posts: 116
Joined: Jun 2017

I am praying for you daily Manapart. I know that you are worried but you are stronger than you think. We are here for you.

manapart's picture
manapart
Posts: 47
Joined: Feb 2019

and thank you all for your prayers. Thats pretty much all I have to hang on to, along with a close friend and survivor who is taking me step by step and day by day through this nightmare. 

I hate being given ultimatums. I had several valid questions, and follow up questions and after awhile he told me I was going down a rabbit hole. My treatment has to be a collaboration between patient and doctor. Even if instinctly he thinks my suggestions are ridiculous. Everything has to be taken into acoount, not only my physical well being but my psychological well being. I said Im unwilling to take whichever one causes neuropathy because I already have neurothopy. It drives me up a wall. I cant in good conscious commit to something that would make that worse or permenent. In a similar medical situation im in, I cant take ANY anti depressants or cholesterol medication because it worsens my tinnitus. Tinnitus is 24/7 toruture. Nothing works for it, not flavanoids, not the hearing aid, and i cant really drown it out. The only thing that helps is white nose, like a constant fan blowing in my room. Everything else im willing to try after surgery, indefinitely if need be, but has to start out as a low dose regiment I can tolerate and i prefer the pill form. I dont need to be told the consequences if I dont follow exactly his plan. Everyone who has cancer knows. I just want reasonable options, and not one size fits all treatment. My thought is, low dose is better than no dose. Along with surgery and maybe radiation, hopefully it will mitigate the side effects, I wont be sick as a dog, and i can still work the strenuous job I have. Suffering is not an option. There are worse things than death. 

Annabelle41415's picture
Annabelle41415
Posts: 5793
Joined: Feb 2009

You've been in my prayers and although it's not all good news today I'm hoping that you can get a plan together to help you.  I've got permanent neuropathy from my treatment and although I'm on medication for it daily, it does help, but if my dose is missed it does drive me to terrible feelings so understand your fear of more of neuropathy.  My doctor had no empathy either and was "matter of fact" but being that she told it "like it was" gave me a better insite as to what needed to happen and she didn't sugar coat anything.  After 5 rounds of the Oxy my hands and feet were bothering me so bad and asked her if she could reduce the dose so that it wasn't so bad and she said she didn't recommend it - therefore now I've got permanent neuropathy.  She didn't listen to my concerns.  You sometimes have to demand things, but at that time I'm just thinking of getting through it.

My dad has tinnitus and he's had it for 60 years and hates it also.  He has really never found a solution except to keep the TV on when he tries to go to sleep but during the day it's a problem and it does wake him up at night. 

I'm sorry you are going through so much.  You are in my prayers.

Kim

manapart's picture
manapart
Posts: 47
Joined: Feb 2019

Cos the more i read about it the more discouraged I become. It like this test of how much pain and suffering are you willing to endure. How much of yourself are you willing to sacrifice. Everyones treatment should first and foremost be tailored to the specific patients needs. And the doctor has to ALWAYS consider the patients pain and suffering. Its like you tell a doctor this is making you worse and ask if you can reduce it and they say no, you have to keep suffering. Its like at a certain point your not really extending your life with chemo, your clinging to it. Like i said, there are worse things than death. I mean how can you even live when you are constantly sick, tired, vomiting, losing your appetite, losing the taste in your mouth, the damage to your nerves, loss of feeling in your hands and feet, mouth sores, losing your hair, low blood count, heart and kidney problems, constipation, diareha, digestive problems, chemo brain and cant function daily from this toxicity. Its like the cancer is saying, if you want to destroy me your going to have to destroy much of yourself as well. But as my ong insinuated, if I dont do it, I have to suffer the ultimate consequence... Like I said, ill give it a go, and try as hard as I can, but if you cant tolerate or cope with the side effects, what else is there to do?

Annabelle41415's picture
Annabelle41415
Posts: 5793
Joined: Feb 2009

To me the treatment was worth it.  It was something that needed to be done for myself to say, yup I've given it all and tried what they wanted and if it didn't work at least I'm not thinking to myself "what if".  If I'd have said "no" then I'd not really have given treatment a chance of working at all.  You, and you alone have to make that decision and if the treatment becomes more than you can tolerate than you need to be your best advocate and say "no more" or "this just isn't worth it for me."  I'm so sorry that you are in this situation.  Giving you a big cyber hug.

Kim

Kazenmax's picture
Kazenmax
Posts: 222
Joined: Feb 2016

The oncologists goal is, first and foremost, to reduce the cancer. They come in it’s guns blazing! They want you to put all you got to it. But sometimes that is too much. chemo Treatments should be designed for the individual. Pain and suffering is an individual thing as well, what I can endure may be totally different than what you can endure. But the oncologist cant predict how your individual body will react to the chemo so of course they should try to understand that you know you body.

but you, as well, don’t really know how your body will react to the chemo. Love, you can’t decide your own dosage without trying it. I know it’s scary but you have to trust your doctor to some extent. I tried to take the Chemo and had some problems. I asked if it could be reduced and my doctor checked and it could be lowered and still be within range.

you don’t want to treat yourself. You really don’t want the doctor to just do what you ask. You want the doctor to treat you and your cancer. Don’t put the cart before the horse. See how you do And adjust. Try to start this battle with your shoulders firm and your mind clear. I sincerely hope you can tolerate whatever comes your way in the coming months. 

K

Twinzma
Posts: 148
Joined: Jan 2018

Chemo may not be as bad for you as you think it will be. Think of us all as snowflakes we are each different each unique in our own way. There is no two of us alike! My hubby handled it all very well hasn't lost a bit of weight, never once threw up, he eat stinky hoagies with onions while getting infused for goodness sake! He tired some, but only missed work for infusion days..He took the kids fishing on our boat and heavy labor in the yard with the pump still attached to his chest. His hair thinned a little, but it wasn't all that bad not noticeable really when he had it cut short. Now it's grown back thicker and curlier too! The Folfox can cause the nurathpy and Jim did have the cold sensitivity....but he was only on it for a few months, it wasn't working they switched him to Folfri and it went away immediately. See honey, not everyone will have all the side effects or become that stereotype patient we all image in our heads. I sincerely hope that this will be your case too that it won't be so hard on you and above all I pray that your treatment works! 

Lily Flower's picture
Lily Flower
Posts: 238
Joined: Jul 2017

I have to admit, my first 3 cycles of chemo made me sick. I felt like I was deflated. My dose was lessened a bit in the reamining 5 cycles and it helped tremendously. I'm currently NED. The oncologist will make adjustment acording to your side effects.  It's hard not to overwhelm yourself but you must take a day at a time and you will get through this. 

JanJan63's picture
JanJan63
Posts: 2169
Joined: Sep 2014

Rod, you likely will not get all of the side effects, just a few, and they might not be the bad ones. I understand your concern about the neuropathy but for the rest, I don't think anyone gets all of those. And typically, the chemo will be over 3 months, I think that's an average. The side effects, if any, go away two or three weeks after the chemo ends, sometimes sooner. I think you're expecting this to be a lot worse than it will be and you can't give up for fear of that.

You just might find that 1) it's not as bad as you expect and 2) it's quite tolerable. We all want you to live. Life has given you a pretty lousy deal and this should not be another one. You need to live. 

I don't know why some people have to endure so much. Once when I was waiting for chemo there was a tiny lady waiting as well. I'm not sure what the correct word is, a midget? She had lost her hair. So there she was sitting there all small and bald and was chatting away with her friend and seemed happy enough but it was all I could do not to burst into tears for her. At the same time I think there's nothing more beautiful to see than someone who is obviously struggling still being a positive person.

I know you're scared of the unknown and want quality of life over quantity but I have to say that there are few things I've gone through during my cancer battle that turned out to be as bad as I was scared they'd be. And when they were over and I realized I'd gotten through it and was okay and on the other side of it, it was a really good feeling. I'm quite proud of myself.

When people say 'oh, I could never go through what you have' or 'you're so strong' and things like that inside I think 'that's right, I'm bada$$, you couldn't do what I've done'. And it feels good! 

You're going to do this Rod and you're going to feel good about it once you've been through the fire, too. You keep telling yourself that you can't do this but I can see your strength in your words. You're up to the fight. You will do this and you'll come out the other side and be proud of yourself. And we'll all be with you, at your back giving you encouragement and strength.

Hugs to my newest hero!

Jan

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