topic Re: I think I'm dying ... in Facing end of life

I think I'm dying ...

SimpleAstronaut — Fri, 29 Jun 2018 17:29:09 GMT

Hi all. ^^

Not a very nice place to write, but I will do my best to explain stuff.

I'm diagnosed with "familial adenomatous polyposis". I have about 100-120 polyps, both in stomack and rectum/colon ....

I just got out of hospital, and my release paper says that they discovered about 20-25 new polyps all over me. They sended me to some high tech .... cat scan kinda stuff, some sort of scan.

The thing is ... I'm 95% sure that my polyps will just paralyse my colon, until one of them turns to the dark side, and betray his evil master. xD

The thing is; I'm 95% sure that I'm dying, and I don't have idea how to tell anyone. My doctors are super quiet, no-one won't tell a thing, ... but I'm sure I'm done ....

Again, I don't have cancer yet, but my polyps just keeps on multiplying. And to me - it doesn't feel or sounds nice .....

So ... How to tell my girlfriend that, best friend that, best female friend that .... anyone has idea?

Thanks.

Re: I think I'm dying ...

dewsbu — Sun, 01 Jul 2018 04:56:44 GMT

Polyps are generally removed during colonoscopy etc.......

Your GP should have access to your records and prognosis and are usually approachable.

Take your girlfriend or a family member with you when you next visit your specialist or GP.

When dealing with any serious condition it is good to have at least one other person with you to help you understand things and ask questions you may forget while trying to process the information you are being given.

You can also get a second opinion.

Re: I think I'm dying ...

randrace — Thu, 17 Jan 2019 02:55:14 GMT

I don't think you are dying. It sounds like you are still in stage 1 or 2. Just ask your doctor, "what is the average life expectancy of someone who has what I do." They should have no problem talking to you about possible outcomes.

Re: I think I'm dying ...

CaptainAustrali — Wed, 30 Jan 2019 11:23:36 GMT

Mate, how are things going now ?

Honestly, to me your original post reads very scared, but also a little bit hypochondriac-y ? (No offense, please, mate !).

The poster who suggested to ask your doctor straight up: "what's the normal situation and life expectancy for people with my same disease profile?" ... I think that was golden advice ... did you find out ?

Is your health OK ?

I think it might add context for other people currently suffering death anxiety who see your post. That feeling of "Oh Shit, I have cancer, I just *KNOW* it !" .. I've actually had a friend from France, young, healthy lovely guy named Thibauld, who would often talk about how convinced he was that he had cancer, and that he was going to die young from cancer. (Ironically he's still fine, and it's ME who got hit, heh).

It's kinda a form of Munchausen Syndrome, where an otherwise healthy person suffers death anxiety.

Mate, not saying you don't have legitimate reasons, absolutely, not trying to dismiss or trivalise, just very curious if you're currently OK ? From what I've read polyps are pretty normal .. although it sounds like you have them in abundance, which I imagine is no doubt a grave concern.

Did your condition escalate into cancer ?

Are you still OK ?

What words of wisdom would you impart to other folks browsing these forums who are suffering death anxiety ?

Me personally ? Not sure that it's wisdom, but I'd say: if you're preparing to die ... don't forget to live. You're still breathing, so there's still time.

Re: I think I'm dying ...

SimpleAstronaut — Tue, 12 Mar 2019 15:11:41 GMT

Wow, I wasn't here for some time.

After last colonoscopy, doctor was rough a little bit, so I got hernia after it. Now I need to go to hernia surgery, my schedule is to make it in next 10 days.

My polyps in stomach are back, even through my stomach was clean, they again keeps growing in stomach, so I have a lot of issues with drinking / eating, cause food is reacting to polyps in stomack.

My colon is acutally really okey. I have like 40-50 polyps, but they are all 3-5 milimeters / mm.

But again, I think they are spreading like crazy.

Doctor said I'm ok with stomach for like 10 years. I don't need to take polyps out of stomach for 10 years, couse they are actually super slow growing.

And I think I kinda need to go on colectomy in about 5-7 years time, it looks like more real option as time is passing by.

Still don't have genetic conformation of disease. It's a slow proccess ... Since I'm like APC and MUTYH negative, it's hard to guess which gene did mutate in order for me to have 120+- polyps.

Sry for bad english.

Re: I think I'm dying ...

SimpleAstronaut — Tue, 12 Mar 2019 15:19:11 GMT

Again, polyps are normal if you have 70 years, and you have about 2 of them maximum, and you get them if you ate Mcdonalds junk you whole life . XD I have 24 years, and I have 120 of them. xD That isn't very normal.

Re: I think I'm dying ...

SimpleAstronaut — Wed, 20 Mar 2019 18:23:58 GMT

Just to give you update, I'm back from colon hernia surgery.

Bad news, I have second hernia - stomach one. So acid destroys my mouth. -.-

Re: I think I'm dying ...

SimpleAstronaut — Sat, 23 Mar 2019 12:31:10 GMT

Just to give you update, I have 3rd hernia, on left side this time, ingunial hernia also ... I still have gas, peeing problems, need to go on scan to be 100% sure, but I think I have it.

F*** you F.A.P.

Re: I think I'm dying ...

CaptainAustrali — Tue, 21 May 2019 14:49:39 GMT

Touch wood, mate.

There's a thing called a PET SCAN, if you don't already know, where they inject some kind of special radiation into your body that illuminates cancer cells.

Diagnostically, it's apparently quite definitive.

Biopsy of course is the way to go, but depending on location and concerns with occult (unknown) cancer, it can't give you the clarity and closure you might need/want.

But a pet scan lights up your entire system, highlighting even microscopic instances of cancer.

I've had two - one bad, one (after treatment) good.

Just mentioning it in case it helps you. "Not knowing" is no place to live.

Re: I think I'm dying ...

looker_labs — Thu, 23 May 2019 09:52:31 GMT

I don't have a lot to say but I want to give you hope.

First of all I think you have a great surgeon.

I still have one they can't get, I'm type O and some just break off.

They do need to get all of them or at least most of them.

Hang tough.

Re: I think I'm dying ...

SimpleAstronaut — Sat, 25 May 2019 23:50:02 GMT

Just to give you update .... my throat is killing me ....

I started to spit a lot of blood in my mouth lately.

I can't do stomach exercise to lower my stomach since I'm from surgery.

I have a lot of heartburns and chestpain couse of stomach hiatal hernia. -.-

My polyps still keep on multiplying.

I can't go to stomach hiatal hernia surgery, .....

I need to get to colonoscopy as soon as posible, I haven't been on one since last autumn.

I need to go also on "sound scan" for 2nd hernia.

I still have peeing problem ....

I tried so hard. 😞 I really really tried sooo freakin hard. 😞

Re: I think I'm dying ...

looker_labs — Fri, 31 May 2019 23:16:05 GMT

Buck up right now mr.

This is a cross you will just have to bear.

I'll give you that you have complications that I can't imagine.

1) You are going to be pissing fire.

2) I think you are actually over the worst of it.

You are not still taking chemo are you? Sometimes chemo will cause cancers

to bite back so hard that you have to go off them and try to let your own system

battle them for a while.

You have less tumors than before right?

less tumor mass is less tumor mass.

Just dont die. I won't tell you you don't have a chance

of dying but with your type of case people die from complications

more than due to the cancer.

I think I may have tumors in the peptic, medial and duadanum

of my colon. Myself, I'm not doing anything my ultrasound

shows 'fatty-scar' tissue in the liver. I can't imagine my life in 10

years. I'm thinking about the liver transplant so I can be strong

for the next time I get sick.

Don't die. If you die I am not going to your funeral and we are going

to leave you by the side of the road.

You are probably not going to die from this but you are going to suffer.

Re: I think I'm dying ...

SimpleAstronaut — Sun, 26 May 2019 23:33:41 GMT

I don't have cancer, I never had it - I was on my way to get it, .... but I have hole in a stomach since last gastoscopy ... And now stomach acid is destroying and eating my throat. Cause my stomach kinda protection is not closing my stomach , so acid is destroying my throat. -.- I have throat pain most time in week ... doctor said that if I spit blood few times, it okey .... but I have spit a lot of blood in last past days .....

I can't go to surgery for that shit, since it's poinless, couse I would need to go on gastroscopy like 2 months after surgery, so there is no point of having it. -.- Yeah, I was in "lucky" 13% of FAP people , who have polyps both in tissue behind stomach, and in colon ... So I have to take both colonoscopy and gastoscopy. -.- I have big hole in stomach, where the top cover was supposed to close stomach, but now that cover was destroyed during last gastroscopy, and acid is slowly eating tissue in my mouth and throat. -.-

F**k you FAP.

Re: I think I'm dying ...

SimpleAstronaut — Sun, 26 May 2019 23:39:43 GMT

And yeah, I tried medicine for having lower acid level in stomach ... I have diarrhea after just 2 days, and I have diarrhea with any medicine which I tried. -.- And I don't have money to buy alternative natural medicine like some tea's and stuff like that , some grass and plants medication .... -.-

I can't lower my stomach with body exercise, since I'm from surgery. -.- I can't go to stomach surgery 'cause there is no point of having it. -.-

I'm 95% sure that I have 2nd hernia in rectum, so I would need to go to that surgery again, and I can't do it too soon, cause I'm just from 1st rectum hernia surgery, and I need to rest for next 2 months. -.-

And I need to pray, not to get cancer in next few months. -.-

Life s.....

Re: I think I'm dying ...

Katekat — Sun, 26 May 2019 23:49:00 GMT

Morning @SimpleAstronaut,

Have you talked to your GP or the hospital/doctors where you had surgery about what you're going through? Side effects, are unfortunately, often part of someone's recovery from surgery/treatment of any sort (not just cancer) but they should never be ignored. It's important to manage them.

And do not be afraid to seek a second or third opinion if you do not get the assistance you need.

Do you have access to counselling where you are? Have a chat with your doctor or even the hospital where you have been going through, they may have one available or know the best options in your local area.

If you are in distress, please consider contacting 01/4833-888 and having a chat with someone. For anyone in Australia that is in distress, this would be Lifeline on 13 11 14 or Beyond Blue 1300 22 4636.

You may also like to have a look at these resources, they are relevant even if you don't have cancer:

Managing cancer pain - podcast
Managing fear - podcast
Emotions and cancer - pdf book

-Kate

Cancer Council Online Community Manager

Re: I think I'm dying ...

SimpleAstronaut — Mon, 27 May 2019 00:13:51 GMT

Well, surgent who did perform my colon hernia surgery doesn't care about my FAP. He just put plastic in my rectum hole, and I talk to him for about 3 pure minutes in 2 months. XD

Gastroenteorologyst has about same principle, I said it went fine, that I don't feel pain ... and I was out of his office after less then 2 minutes. -.-

Then 3 months later, I wanted to check release papers, and I got diagnosys "hiatal hernia" (which is hernia on stomach cover) .... They didn't tell me that day after gastroscopy, my family general doctor didn't tell me that when he saw release papers ....

.. Everything was fine in next 3 months after last gastroscopy, and then every day throath pain, every day stomach acid problems and stuff.

Now things which I can do is:

1. Go to total colectomy ... but my body won't make it. I'm 95% sure that I will die on the table. It's fu**in super hard surgery, and I won't make it, my body won't make it. My body is already beyond f**kable so I won't make it. I will die on that table.

2. Go to stomach cover surgery, which is also a hard surgery ... and never go to gastroscopy again.

I just don't have strenght anymore ... I just can't do it anymore .....

The way I see it;

I will die in two ways:

1. acid will eat my mouth fully.

2. I will get colon cancer.

I'm in the endgame now. -.-

I just don't want to die on that table, I just can't do it, and I don't want to. -.- 😞

Re: I think I'm dying ...

SimpleAstronaut — Mon, 27 May 2019 10:24:53 GMT

Since most of you don't know what I'm talking about, my stomach looks like this:

https://www.mayoclinic.org/-/media/kcms/gbs/patient-consumer/images/2013/08/26/10/13/ds00099_im01191_ww5rl88thu_jpg.jpg

https://img.webmd.com/dtmcms/live/webmd/consumer_assets/site_images/article_thumbnails/reference_guide/medical_reference/375x321_hiatal_hernia_frameless.jpg

https://www.clevelandclinic.org/healthinfo/ShowImage.ashx?PIC=4036

Re: I think I'm dying ...

looker_labs — Wed, 10 Jul 2019 02:03:22 GMT

dont die fight it for years you are too young to die

it may seem depressing ALOT but you can expect to be here

this year and next sir

Re: I think I'm dying ...

looker_labs — Wed, 10 Jul 2019 02:05:48 GMT

I tell you riddled with tumors all benign - you sir have the worse case of it on record or in recent memory Its 100% as agressive as cancer

Re: I think I'm dying ...

SimpleAstronaut — Tue, 17 Sep 2019 20:51:54 GMT

Officially .... My body is slowly going to 5hit. -.- And there is nothing I can do about it. -.- My body started to feel really strange. -.-

I did operate one above leg hernia, I need to wait for sound scan for other leg hernia.

My hiatal hernia started to hurt as hell. And if I operate that, I can't go to gastroscopy for the rest of my life, and I will get cancer tiny below stomach. And if I don't operate that, I will die of esophagus cancer.

My blood picture is f***ed up like big one. My thrombocytes are extremely low. My kalium is also f***ed up a lot, so I have a lot of peing problem, and if we add leg hernia to that ... I'm usually on toilette about 45 minutes at least. -.-

And if I got to any surgery, I wouldn't make it, my body is f***ed up hugely.

I usually get throat infection also, cause of hiatal hernia acid and stuff like that .....

Life sucks.