Stuck!- Now Surviving on an All Clear Liquid Diet.

Hey all, I just wanted to post an update on my personal Colon Cancer Stage 4 journey. Things have taken a very strange and not good turn for me.

I truly am very Worried and Concerned about the refusal of local Drs. to put a Stent into my Colon -(they all say I desperately Need!), so that I can go on living. I have very little room and a partially blocked colon. That means-NO FOOD!

I spent all of last weekend in the Hospital. While there I was pressured to sign a DNR form-Groan😪-We all know exactly what that is. I was lectured pressured and told,

"Don't you want to sign this...you know since you have The Cancer." I was fully conscious. Not going into surgery. Simply being admitted into a Hospital. That really bothered me. If anything were to go wrong I thought I am here in a freaking Hospital. And they don't want to revive me? Ugh! One Social worker told me do I want my dog to die with me too?

She says that can be arrainged. Holy hell!

HE doesn't have Cancer. He is not dying. 🐕❤ I would N E V E R do that to any dog!

Then a Surgeon came in and told me he was going to do a Colectomy and get a permanent "bag"-on me and it was major surgery. 1st they told me I had to have a giant tube shoved up my nose and that it would go around the inside of my face? 😳and down into my throat?😳😳 I was not okay w/that. All kinds of scary doomsday talk. Really nasty. I was not prepared for that! Anyway-after in my opinion a lot of wasted time and BS-told by a Nurse I will have to "drink it down," all 84 ounces of polyglycol that I am SEVERLY ALLERGIC TOO. Same Night Nurse refused to give me my Anxiety meds told me, "you cant have it. Dont you know there is a shortage?" There is no anxiety med shortage. Last Monday, after working out, doing Yoga and stretching and Sick and Tired of being there...with nothing happening--I said, "I am going home. I have a nice home to go Home to. My dog needs me." Then they told me all of a sudden I could just DIE! Right there!! I said-"Funny, I do not think that will happen." The BS was so thick!!! 1 week later...still waiting...waiting...NO surgeons will put this stupid stent into my body😭. I FEEL HATED 😭😪😓.

I AM FIGHTING TO STAY ALIVE! Anyway, Praying lots and lots!!! Stuck on an all clear liquid diet. It is really really bad. If anyone here has any ideas please feel free....your thoughts and input are greatly appreciated 💖

[Hidden]

plus....this all happened after a very bad reaction to the FOLFOX5 CHEMO plus the Pump. Not 1 time has my personal ONCOLOGIST EVEN CALLED ME 😪😔. Some personal Care.They made me see a different Dr. who told me, "None of your Side Effects are related to your chemotherapy. They just happened to coincide with your Chemotherapy."--THAT trip to the River Denial is so freaking long.....I remain very truly worried about my Medical Care-or lack thereof. They also prescribed Potassium chloride. I went to pick it up the pharmacist gave me a giant 640 ml bottle with NO DIRECTIONS ON HOW TO TAKE IT. This can literally kill a person. I had to google everything about this. It has to be diluted in 8ozs of water. I also am allergic to bananas and prune juice and this. I took some and my colon/stomach swelled up super bad and I had severe painful cramping. A HEAVY feeling in my throat like I couldn't breathe. Scary. I made an executive decision that I am never taking that ever again. They were going to give me 14ml straight into my Port--I said-NO. I am SO allergic to this stuff.

Is there anyone out there who can relate to what I am going through?? Is there a tomorrow where a Doctor actually C A R E S about me and wants me to Get Better??? Like have a fighting chance at Living A Lot longer???

[Txbj1 in reply to Hidden]

😢😢😢 I am so sorry that you are going through this! I can’t understand why the medical institution isn’t making proactive steps for you! Why haven’t your oncologist contacted you?! That infuriates me. Not even the nurse? They just leave you hanging? I’m sorry that your had a bad reaction to folfox. I was really hoping that it will help. They didn’t even offer another treatment plan? Sorry that you have bowl obstruction. Can you drink something with high protein to keep your immunity up? The hospital was so uncaring. 😔😔😣😔. I will keep you in my prayers 💕💕

[Hidden in reply to Txbj1]

Thank you Tx for your kind words and prayers! Yeah, it's not a good situation at all. I do see the nurses and did get coupons and some free ensure protein clears. I am not saying they aren't nice, but my Oncologist has not contacted me once since starting the chemo and I have left a bunch of requests. One person I have to see constantly ignores me and talks over me, talks on and on all about herself-thats painful. I told her uts really difficult not being able to eat any food. And she dies not care. Says nothing!

So far after a week--No alternatives. No discussion. No information given to me at all about my situation.

I am living on those ensure clears 2-3 a day, jello, bone broth, electrolyte drinks just bought yesterday; it's still a precarious situation bc the stent is urgently needed. I am truly afraid that I won't get it especially as time goes on with zero response from the surgeons.

[Hidden in reply to Txbj1]

The one thing that helps me is talking about what is happening here in this place. Your empathy and prayers matter a lot to me.I guess I can't understand if these Drs. have all my CT scans and can see the tumor cutting off my colon why the heck didn't they put this stent into me a month ago? Zero oversight. Zero planning!!! How the heck should I know that the tumor is that big and doing that? They keep me in the dark about EVERYTHING. Anyway, Thank you for your Prayers 🙏 very badly needed! So is an action plan of care.

[Schnoodle2017]

I just don’t know what to say. The people you’re dealing have certainly abandoned the “do no harm” oath. I fear this is probably nationwide in the USA and Canada. It’s even worldwide to verging extents. These DNR notices attached to patients are now all too common here in the U.K.

we really literally have to advocate for our health which near impossible when someone is so I’ll as yourself. You just don’t that stress when the medical profession should doing everything they can to help you recover as best as you can.

I’m sorry I can’t suggest anything specific. I’m finding I’m having to chase things up with my healthcare but, I’m not really ill so have the energy to hammer away at them 😉 healthcare is so different since since COVID. It’s the worst it has ever been.

One thing comes to mind. Are there a cancer support groups? Any group that, I hope, that can advocate for you? It would something as you’re carrying this all on your own whilst very sick 😢 I hope there’s something out there for you that can take the weight off and advocate for you.

[Hidden]

Hi and Thank you so much for your kind words. I don't have any advocates. That has been a 2 year plus search to no avail. Just feeling truly overwhelmed with this situation. I will keep trying to find someone to help me. I think I am really stuck in a terrible atmosphere for my life.

[Gorsundar]

Wow. You are really going through some heavy stuff. My prayers are with you!

[Hidden]

Thank you G! Yes. It is a hellish ride right now. Trying hard to survive this Storm and just get past it. Your Prayers are needed and greatly appreciated! I Hope you are doing well? Best wishes to you ~

[Gorsundar]

Hi there,Just wanted to check in and see how things are....

[Hidden]

Thank you so much for remembering me. I feel truly alone here in the Midwest. Things are going very badly regarding my Cancer care. Very badly indeed! I am not being cared for in any way by me Oncologist.This past week I did a 3 day Colon Prep plus that all liquid clear diet is still going now since May 24th. I am losing a lot of weight. I went to a different hospital and the Dr. who was gling to put the stent in did a lot of research and did not think it was a good plan for me. He did the Colonoscopy and told me to start small and try to eat again just keeping things flowing through my colon. Starting small means a small meal of cream of rice. Drinking protein shakes. Slowly introducing easy to digest foods mostly still all liquid. He cares about me and his team are really kind and caring to me. Finally a Dr. who isnt surgery happy to start cutting into me. This is a First! Then due to the Colonoscopy I couldn't drive. I had asked for a reschedule w/my Onc. She knew my situation. She talks to ALL these other Drs. While I am at their clinics then REFUSES! to talk to ME HER PATIENT 😭😭😭. They refused to reschedule except a ridiculous 8am that I can't make-they know that. I do not matter in her eyes. She will not even call me. There are NO PLANS OF CARE FOR ME 😭😭😭😭😭😭😭😭😭I cannot Slerp. All I do now is Fear that I am going to die bc these Cancer Drs. Refuse to help me.I don't want to die I desperately need to keep living and fight this! I see in BC Mets here all these patients are on drugs to fight the BCMets. ZERO PLANS FOR ME BY MY ONCOLOGIST. ZERO! 😭😭😭😭😭😭 They hate me here. They want me to Die here G! I am desperate to Live!!!!! This is SO Wrong what they are doing to me here. Truly VERY Scared! Just Keeping On and Praying and trying to figure out what to do? Going to see the very kind and gentle Surgeon this week who did my Colon Resection but I am scared he won't help me. Very very worried for my future 😪😔😓 trying to eat very small cream of rice plus some lactaid ice cream with lactose free milk. So far it's going okay....starving tho -

[Hidden]

One would think if a Stage4 Colon and BC Patient is forced to be on an all clear liquids diet for 3 weeks that the DOCTOR WHO IS SUPPOSED TO BE CARING FOR THAT CANCER PATIENT....THEY SHOULD CARE. She won't make 1 phone call to check on me or ask me how I am? I feel ABANDONED HERE 😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭