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Thread: What a long strage trip it's been

  1. #1
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    What a long strage trip it's been

    Hi,

    I had Hep B and D in the 1980's and never took any treatment. I was pretty sick for a couple weeks but pulled through on my own and the Dr. said I have Immune status to Hep B.In the mid 1990's I was diagnosed with Hep C. I was really sick for over a month but made it though. I knew what it was that made me sick but went to the local ER room to see a Dr after I got well to get confirmation.

    I had a lot of friends who had Hep C and every one of them talked about how sick treatment made them. A lot of the meds they advertise on TV now for treatment of Hep C have warnings if you've ever had hep B. I watched my Grandmother take Chemo for her cancer treatments and begged her to stop because I thought it was going to kill her but she stayed the course and her cancer was cured.

    I live alone and am alone in the world. I can't depend on anyone to do anything for me and I couldn't afford to be any sicker then I already was so I decided against taking treatments for Hep C. My body beat Hep B and D so I thought maybe it could beat Hep C. That has not been the case but I place my trust in God and believe when it's your time to go you're going no matter what.

    About 6 months ago I started getting sick to my stomach where I could be feeling fine and within 2 minutes be on the verge of throwing up or get sick. I was convinced to see my Primary Care Physician and did so for the first time in 4 years. He ordered an MRI of my brain and abdomen. It came back I had moderate cirrhosis, hepatic encephalopathy, 7mm areas of arterial enhancement in the right hepatic lobe and "innumerable small regenerative lobes throughout the liver".

    My Doctor said it was the first time he had ever seen a report where they could actually see HE on an MRI. My brain must be full of toxins. The regenerative lobes were described as how the liver tries to regenerate but things go wrong on the cellular level and that's what develops into cancer. He had a blood test done and it did show the flag for liver cancer was elevated. He recommended I see an Oncologist and have an appointment in a week or so. I won't submit to a biopsy and is partly why I wouldn't take treatments for Hep C.


    I was familiar with "brain fog" being associated with Hep C but hepatic encephalopathy was something new to me so I researched it. It has me written all over it. My short-term memory is failing fast, my thoughts aren't as clear as they once were and I'm finding it hard to take in information I used to understand clearly. On a level of 0-5 with Level 0 being mildly affected and Level 5 in a coma I would put myself at Level 1 right now but can see myself progressing up the scale. I've read other people with HE talk about how they do things and have no memory of what went on for an extended period of time. I can't get like that because I don't know what I'll do considering the possibilities. Losing my mental acuity worries me more than dying.

    I do have a sibling but they have only been to my apartment once in over 10 years. I can't go to their home because the apartment building I live in has had bedbugs. They're afraid I'll bring little visitors with me and I don't want to go over in case they get them on their travels and get blamed for it. I called to let them know about the medical details and they wanted to know if there were any prized personal possessions I'd like them to have to remember me by. Something that won't have a chance of infesting them with bedbugs like jewelry. They have a big family and not one person has called since I told them about my condition. I can understand why. It would be awkward after never having called once to ask how I was feeling the last 25 years or so.

    I'm not telling anyone else because I'm not that close to anyone and don't want them to know. I watched how the people in the building I live in treated a girl who was going through Chemo and it was awful. I stood up for her but they didn't think she should be cut any slack because she was going through Chemo.

    I've spent the majority of the last 10 years so or home alone. Things have gotten bad for me here recently and it no longer feels like my home. I'm thinking of moving but not sure what to do at this point. I don't have anyplace else to go and don't now how long I'll be able to take care of my personal needs like cooking, cleaning, shopping etc. much less remember things like where I put important papers. It might be best to stick it out as log as I can.

    I have a prepaid burial plan but a couple years ago canceled my funeral services and am going for immediate burial. If people can't come see me while I'm alive I don't want them standing around looking at me when I'm dead trying to think of something nice to say. That would be embarrassing and I won't know the difference anyway.

    I plan on telling the oncologist I'm going to refuse any treatment. If cancer doesn't get me HE or cirrhosis will so what's the point in dragging it out. I only want them to help with pain relief to the extent possible so I don't die a long drawn out painful death. The best outcome IMO would be a fast onset of liver cancer and to pass on before I go into dementia and die from HE. I already told my primary care doctor that and he didn't comment. I don't know how the oncologist will react or if they will help me at all in regard to pain relief. I'll just do the best I can to get through it with as much style and grace as possible.

  2. #2
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    I sent you a DM.

  3. #3
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    I saw the Oncologist for the first time a few weeks ago. We have a contentious relationship at best. He totally discounted the HE, said it had been misread and I had been told wrong. I asked if he even knew what it was. He said he'd been doing this for 20 years. I've had Hep C longer than that so I asked how he knew what went on in my head.

    I saw a Hepatologist after that who I really liked. She explained things in detail and let me make my own decision. I told her I really didn't feel like doing anything but it didn't make sense not to try so I agreed to everything she said.

    She started me on something that will flush the toxins out of my system to counteract my liver not filtering them out and the HE. Then start me on HepC meds for 12 weeks that will aggravate the HE. When your liver becomes cirrhotic it makes it harder for the blood to pass through so it backs up into your stomach. This can cause the veins on your stomach to enlarge, possibly rupture and you bleed to death. So every 3 weeks for the foreseeable future I get put under to have a tube stuck down my throat to band any veins that are enlarged. She advised me some people tolerated it well but there possible complications associated with the procedure. At that point I didn't even ask what they were and haven't bothered to find out myself. I can't drive myself out or back and will need someone I can count on who will commit to taking me to the hospital as a job if I have to pay for it myself. Once I get home I'm on my own.

    She said they couldn't do the procedure of running a thingy up the vein in my leg to burn out the tumor in my liver at the hospital here. I will have to travel about 100 miles to get that done and see a Dr. from that hospital soon. My Oncologist said the procedure she described might not be the option they choose and might have to get cut open. He also stated that if I didn't get a liver transplant it would only be going half-way and wasting my time to go through all this and end up with a live that didn't work anymore. I don't want a liver transplant and my other Dr. said that was my decision.

    I called my sister who lives about 2 miles from me and 4 miles from the hospital to advise her on the details. About why I needed a ride to the hospital every 3 weeks and if her husband who is retired could give me a ride. She wanted to know why I couldn't take a cab. The hospital won't allow it for legal reasons or I would have taken one 4 years ago when she cancelled out of giving me a ride to get a biopsy and get treated for HepC then. Not only can't I go to their house I can't get in their vehicle if my life depends on it. I said I guess I'd drive myself 100 miles to the hospital to get the tumor worked on and hoped I felt like driving back. She said they would probably keep me overnight.

    I'm trying to work something out but have to meet my spenddown on Medicaid before I can qualify for a ride from the hospital program and right now I'm not covered.

 

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