Hello, i am just putting this out there bc things have suddenly bcme very bad for me. I did the Chemopump w chemo all day monday got v.sick tuesday lost my voice 3 days. Got the pump off am very very sick. Cant eat. Exhausted. I can't take any of my pain meds. There was no support last night. No social worker. No counselor. Nightmares all night. Can't eat.
I feel bereft and like they pushed me out to sea.
I called their 24 number they promised to help. Got a cold dr. With an unintelligible accent could not understand him. He did not care. It was horrible 😭😭😭😭.
I am scared.
I can't see myself doing this ever again.
I wish there was more support for disabled people like myself.
Hi Tom Thank you for yr reply🙏 I am here in the Midwest. I really don't want to say exactly unless its in a private dm. Bc I am disabled. Im sure you can understand. And i know everybody here is very loving and supportive too.Thank you for all your support and encouragement. I am doing better. Able to drink water/crackers-took my pain meds this a.m. and enjoying the breezes on my balcony.
So glad to hear that things are improving. Having colon cancer was quite an experience for me. I had my rectum removed and got an ileostomy bag. After one year that was reversed. It's been quite a ride and there are some effects that have lingured. But all in all I'm glad to be alive and also glad to now weigh 158 intead of 223 LOL. This colon cancer seems to be very common and is striking younger people. In fact a number of my relatives have had it but it blew me away when I had genetic testing and found that I do not have the gene. Go figure.
I’m very sorry to hear this. Sounds like a nightmare. Healthcare these days seems to be trial when trying to what we need and especially advice, reviews, recommendations etc. a healthcare professional with a poor bedside manner makes things a lot worse.
I hope you managed to see someone soon, for a review. Just someone of prople to talk to in the meantime helps a little. My thoughts and prayers are with you.
Yes. Thank you! I agree. It has been a nightmareI didn't get in to see anyone. I guess the chemo drs dont go to the hospital? Very very odd! I am sitting up. Managed to drink fluids keep cracksrs down and took my pain meds.
A dear Angel is coming to take my doggie for a couple days bc i cannot get up and down 3flights to walk him. She is a Godsend Answer to Prayers! I live alone am Disabled and there is literally NO Support where i live. I am not in any situation where i can be immobile alone and so sick.
Tons of applications for chore help all ognored. UHC DualComplete has ignored ALL the Calls with the cancer center and me both begging for
A. Social Worker
B. Options
C. Support
This is the new terrible futre of Medicare/Medicaid.
Thank you for yr kind reply. I am in dire straits. Just fine b4 that FOLFOX5 PLUS chemo pump
Put walking my doggie. Taking GOOD excellent care of myself. Then they put thatport in plus tons of chemo. I thought i was going to ...anyway, slowly but surely putting in foot in front of the other. I am truly traumatized from all the junk pumped into my body and surgeries and needles oxygen hkspital smell. I belong in NATURE! Nature is my Healer! I have managed to stand and walk and will keep tryjng to get stronger. Determined to holdfast to my independent life with my beloved dog! He is ALL I have and this just should not happen.
Anyway THANK YOU for seeing me!
I don't know what my future holds but No More Poison is getting into me. That is it. I consider myself really lucky as I write this. I have nlt been told the Truth nor given even adequate support in any way to deal with that stuff.
Hope you are well. Thank you again so much. ANY support and encouragement is greatly appreciated 💖🙏💐 ~
I am so sorry that you are having such a tough time. I guess I was very lucky. I went ever 2 weeks for 6 months for a 2-3 hour treatment. I then went home with a bottle atached to me with a PIK line for a couple of days. I never got sick and never needed the pills to prevent feeling sick. What I did get was neuopathy in my hands and feet. My feet are still numb 5 years later and my hands a bit numb. Towards the end of treatment they adjusted my chemo mixture in order to try to inflict less neropathy on me. Some people chose to go for only 3 months but i wanted the whole 6. All in all I thought they took great care of me. Ths was of course prior to covid. I am in Canada. What country are you in? I know that covid has really put a strain on healthcare syatems
Hi K and thank you so much for yr kind words! I don't know what happened. I am very allergic to saline fluids and overall very allergic to many many meds. None of it worked for me. I cannot see myself doing that again. I won't survive. There have to be other options. I may need to try to get to a different Cancer Center. Just trying to get thru fatigue naseau just intense brutal fatigue pain spells up all night no sleep finally getting fluids and crackers feeling a bit better.That is really terrible ablut yr neuropathy! They told me if i took the chemo pill i too would get that and it might never go away. So tragic! My Heart goes out to you!🙏💖 I am in the US in the Midwest. At this point. I just need to get back to literally functioning halfway normal. Thank you and best to you 🙏💖
Did you get a after hours number to call the dr's office? When you sick is it nausea? That is very common and also having malaise happens too. Is was during pump connection? Is the Dr going to lower the dose? Mine happens hours after disconnect then I am wiped out! for the past 2 treatments the morning before disconnect I have been really nausea, even when taking he nausea meds. I hope the crackers and fluids hold.
Oh Thank you so much Txb!Yes, the naseau was like nothing i have ever known. Never. I am on zofran every 7 hours holding it at bay. The worst were the endless hours of severe pain!!! It felt like the poison was scraping my whole stomach raw. I could not eat or drink anything. It was like my mouth and throat rejected every tiny sip of water. Just gagging. Dry Coughing. In a state of utter raw pain and suffering. Every single time i called at night just for ANY HELP AT ALL
like-what do i do!?
The Answering Service argued with me. They were mean. They kept putting me through to a not kind Dr. Not in ANY WAY WHATSOEVER 😭😭😭😭😭😭😭ALL HE SAID WAS-
WELL I GUESS YOU NEED TO GO TO THE ER.
Everybody told me
We are here for you!
Until it was 4pm and then no they were not!
Finally I reached a nice nurse who told me how to put the meds under my tongue. I somehow. Do not know how? Time? Suffering? Poison passing thru my veins? I rounded a corner and was finally able to get water and crackers down. Then my anxiety and pain meds.
As if the Angels broke thru the clouds a literal Angel reached out to me today. She came over and spent more time with me today than anyone ever has in 6-10 plus YEARS! She is a GODSEND! 😇🙏👸
She took my dog out to go potty! She cleaned my kitchen! No easy task at all. She took out ALL my Smelly Garbage !!!! I have No other words than:
She is a Tremendous Blessing and a HUGE answer to Prayer!
Now all those miracles occurred and sadly, there is still
The Cancer needing that Chemo!
T- how do you do it?
How?
I do not know nor can I envision surviving anything like that again.
Just having a pump attached to my body was very traumatic. I am not a hospital person. Saline makes me gag with naseau. Hospitals make me physically naseaus. I avoid them at all costs.
At some point I was able to get down on the floor and hold my puppy again and love on him and say, I am still here!
My heart goes out to you and I admire anyone who does this because it is pure
HELL.
I am going to sound like a big coward but I do not believe I can do anymore. I just do not.
Maybe your idea to get the doses lowered? That is at least a possibility. As for that pump? No. Just. NO. I called those chemo 24hr. People too to beg for help. Nothin doin!
So for someone living alone who already suffers PTSD severe Anxiety Disorder-and truly no one to call....I don't know what to do at this point.
I am curious T
Have you heard about some alkaline diet? And drinking that stuff you put into yr sink with water? Baking Soda? Is that healthy? Do people do that? I guess I heard something today that that has cured people too?
Thank you for yr kind words and I hope you are well 😇🙏💐🐦 ~ this is by far the hardest thing i have ever done in my life.
Oh Man... I am sorry that you are having a hard time. I can't stand the pump and glad that tomorrow is my 12 and final treatment. I have been up and down. I have a lot of people praying for me. I met someone here that we email back and forth every now and then to see how each is doing. The whole treatment has been a process there was times when I said that I wasn't going back to the cancer center because was too hard, It wiped me out for days! I had to drag myself into work on Mondays and I didn't start feeling myself again until Wed/Thurs just to get back in the char the following Weds. I cried, I fussed and then I started counting down the treatments and now I have finally arrived to the 12th as of tomorrow.
So it is tough and you gotta find whatever you got deep within to continue. Find it from your toes if you have to. I did detox baths, sleep like a bear and just try to rest as much as I could to recover quicker. Water was the hardest to drink because how the chemo drug make everything taste NASTY. Warm and hot teas with mint and lemon helped.
In August I will see the Dr to go over the PETSCAN that I will be taking sometime in August before I seen him, if everything is good then my port gets removed then I see him every 3 months the 1st year, every 4th months the 2nd year then every 6 months for the 3rd year.
As far a baking soda, I only used it to help detox when I took my detox baths and used it as a mouth wash long with peroxide and it helped to keep the mouth sores at bay.
alkaline diet as far I am aware is the foods your eat that contains alkaline like certain veggies and fruits. I don't know about baking soda being used in a diet.
Hang in there, I will continue to pray.
I am so happy for you! Look what a trooper you are! That is an Amazing achievement. Thank you for telling me about your symptoms bc yes water for me too is the hardest to swallow during chemo. Here i am right now at the CANCER drs office and they are telling me that my Chemotherapy symptoms basically a lot of what you described also.....Are NOT Chemotherapy symptoms.
Can you believe that?! Ugh
I know it was chemotherapy symptoms. I am not an idiot.
Blank Stare, well the symptoms didn't start happening until we started chemo so I don't know what planet they are on. if you look up the chemo drugs for FOLFOX it will tell you the side effects. Anyway HANG IN THERE
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