Diagnosed with stage 4 cancer - the long winding road it has become

[MrJacques]

https://www.cancer.net/blog/2018-01/new-research-shows-blood-test-can-find-colorectal-cancer

 

https://www.webmd.com/colorectal-cancer/news/20180118/could-a-blood-test-spot-early-stage-colon-cancer#1

 

Sonar scans might be able to pick something up, but I think by that stage you would already have a fair amount of symptoms as well.

Edited September 5, 2019 by Jacquers

[Cois]

I went through exactly this. 4 months of mis diagnosis, lets treat for IBS, lets see if its Giardia, Ulcer? Because I was a 34 year old male with a resting HR of 52 and a fat % in single figures, who'd never smoked and exercised 15 hours a week the GP never thought to think beyond their normal checklist. She did eventually pick up that I'd lost 20kg in the last month, only then did she refer me straight to a surgeon and in to theatre the next day. This simplistic numbers based approach cost me half a colon, a spleen, a permanently damaged liver, destroyed abdominal muscle and nerves, 6 months of chemo, 2 flatlines, 31 days of consecutive huge dose radiation treatment and a 3 year recovery period.

 

If you are concerned about the healthcare you are receiving in any way - get a second, third, fourth opinion - whatever it takes.

Silly question. Living without a spleen. How does it effect you?

My spleen should have been removed, but The surgeon at Steve Biko decided to screw things up with a six hour surgery for a stoma only, and removal of nothing else. But the oncologist said we need to cut, and AFAIK my spleen needs to go.

[Cois]

https://www.cancer.net/blog/2018-01/new-research-shows-blood-test-can-find-colorectal-cancer

 

https://www.webmd.com/colorectal-cancer/news/20180118/could-a-blood-test-spot-early-stage-colon-cancer#1

 

Sonar scans might be able to pick something up, but I think by that stage you would already have a fair amount of symptoms as well.

The one surgeon (Dr Durandt) at Eugene Marais hospital could pick up the tumors with sonar.

 

The bloodwork is a gamble as my blood at this stage shows that I am cancer free, but the MRI shows all 3 tumors clear and well and growing. They did not do any other blood tests afterwards, but if they could do a blood-test a month prior to the colonoscopy it would have been better, and less of a shock to my wife as the ass hole doctor scared the crap out of her by telling her first of my diagnosis and with 0 tact and in a full waiting room. So the other patients knew even before I knew!

 

Colon cancer is a bitch according to the oncologist because it hides itself. Best will be to look for signs.

Blood in stool, change in shape of stool (not always a clear indication), change in frequency of having to go... and any weird pains in your organs. Like the tumor pushing on my bladder that caused pain.

Edited September 5, 2019 by Cois

[Chris_]

Silly question. Living without a spleen. How does it effect you?

My spleen should have been removed, but The surgeon at Steve Biko decided to screw things up with a six hour surgery for a stoma only, and removal of nothing else. But the oncologist said we need to cut, and AFAIK my spleen needs to go.

 

Lymph nodes isn't it? I imagine it'll be a challenge wrt bumps, scratches, any infection really. I'd be interested to hear the answer here.

[cat-i]

I go offline for 2 days and come back to a whole thread of news. Very pleased that they didn't find any tumours in your brain. Thinking of you Cois, wishing you some good news this week. 

 

My brother survived Colon cancer. His wife is in a wheelchair; his son was in primary schoo at the time. I was up here in Gauteng and my sister also 150 km away. So he drove himself to chemo in the mornings and went back to the office for a full day's work after he sick leave and leave was depleted. The biggest concern was - what about his wife and child? I don't know if that added more stress or if that was what made him endure everything and helped him fight it.

 

I hope that in ten years' time you can tell someone that you survived it and maybe motivate someone else to keep on fighting.

 

Love and light.

[Blackheart]

Silly question. Living without a spleen. How does it effect you?

My spleen should have been removed, but The surgeon at Steve Biko decided to screw things up with a six hour surgery for a stoma only, and removal of nothing else. But the oncologist said we need to cut, and AFAIK my spleen needs to go.

 

No spleen means a higher risk of infections, especially in the first couple of years. After that according to what I've been told is that other organs adopt certain roles, such as the liver.

 

I just have to be careful about keeping cuts clean and being aware of my body and how it feels when it's unhappy.

 

I keep my immune system healthy and I have not let any of this stop me from doing anything, so I have made it my lifes mission to be healthy and happy.

 

I've had no issues regarding being spleenily challenged.

 

There are other consequences of the whole thing that have been far worse.

[Blackheart]

"the ass hole doctor scared the crap out of her by telling her first of my diagnosis and with 0 tact and in a full waiting room. So the other patients knew even before I knew!"

 

Yes, they are not generally the most sensitive.

​My first Surgeon looked me in the eye and his first words were : "I hope you don't have a wife or children"

​In shock I asked him "Why?"

"Because you'll be dead in 2 weeks"

 

I fired him on the spot and found the guy who saved my life.

[Chris_]

"the ass hole doctor scared the crap out of her by telling her first of my diagnosis and with 0 tact and in a full waiting room. So the other patients knew even before I knew!"

 

Yes, they are not generally the most sensitive.

​My first Surgeon looked me in the eye and his first words were : "I hope you don't have a wife or children"

​In shock I asked him "Why?"

"Because you'll be dead in 2 weeks"

 

I fired him on the spot and found the guy who saved my life.

 

You lie! Impossible...

 

Good grief.

[ChrisF]

Popped in at the shop on the way home.

 

Turning the isle I see a 30-something lady with the CANSA headband on ... no visible hair ....

 

My blood went cold when I saw her 8 year (guessing the age) old kid !! 

 

 

This is one cruel disease !!!

 

 

 

so hoping she was only wearing it in support of a friend .... but I just cant shake that feeling I got when I saw her kid (kry nou weer n knop in die keel)

[Blackheart]

Popped in at the shop on the way home.

 

Turning the isle I see a 30-something lady with the CANSA headband on ... no visible hair ....

 

My blood went cold when I saw her 8 year (guessing the age) old kid !! 

 

 

This is one cruel disease !!!

 

 

 

so hoping she was only wearing it in support of a friend .... but I just cant shake that feeling I got when I saw her kid (kry nou weer n knop in die keel)

Hey Chris

 

It's a real cruel bastard this cancer (I never spell it with a big c, it doesn't deserve the capitalisation).

 

But there are so many ways to look at that particular situation.

One is that (assuming the worst) at least those two souls, mother and daughter knew what it was like to know and love one another.

 

At the time of my diagnosis I was married but with no children.

One of the things which angered me the most was that I would die having never known what it is  to be a Father and love a child, and feel that child's love back.

 

When I was told during my treatment that due to the surgery, the chemo and especially the radiation that it would be impossible to ever have children, I was properly broken for a while.

 

I now have 2 little miracles (11 and 6) who are healthy and happy, and no one can explain how that could possibly happen.

But that might be a story for another time and place.

[Cois]

At the time of my diagnosis I was married but with no children.

One of the things which angered me the most was that I would die having never known what it is to be a Father and love a child, and feel that child's love back.

 

In the same boat.

Then you get people like my cousin. No love or time for their 3 kids. He and his wife are not worth being called parents (and I do not care if they see this, they know how I feel)

 

But on the plus side, I would not be able to take care of kids at this stage, so kind of a blessing

[Cois]

You lie! Impossible...

 

Good grief.

Sad to say some doctors and nurses are like this.

 

The nurse at The CANSA stoma clinic asked me where I want to die. At home or at a Hospice. And also with the words, you will not make it, there is no cure and you will die soon.

 

So I have a mission to show her that she is wrong! They are all wrong! **** them and **** cancer!

 

Sorry for the harsh words

[Cois]

No spleen means a higher risk of infections, especially in the first couple of years. After that according to what I've been told is that other organs adopt certain roles, such as the liver.

 

I just have to be careful about keeping cuts clean and being aware of my body and how it feels when it's unhappy.

 

I keep my immune system healthy and I have not let any of this stop me from doing anything, so I have made it my lifes mission to be healthy and happy.

 

I've had no issues regarding being spleenily challenged.

 

There are other consequences of the whole thing that have been far worse.

You see this is the kind of things one needs to see.

The doctor at Steve Biko had a whole other outlook and was the view of you will die without a spleen.

 

Doctors love doom and gloom

[V18]

I'm appalled by what I'm reading! Can't believe doctors talk to people like this! There is no excuse.

[cat-i]

,,,

 

So I have a mission to show her that she is wrong! They are all wrong! **** them and **** cancer!

...

 

Great to see the fighting spirit. A great reason to stay alive and beat this. 

[Eddy Gordo]

Some doctors have no tact. Whats it now 4 yrs since my op. I had a massive growth removed.....long story.

Anyway a year prior to this I was seeing a specialist who was also doom and gloom. Said I wont make it etc etc etc. Then a month later I went to see someone else, this is the same doc who has saved my life....... Long Long story.

 

Cois buddy, I dont know how you do it, I am suffering since march on and off. Bad headaches to migraines where I am naaar, cant even open my eyes. My body is sore, I am getting pains in places no one would think of.

I have gone for all the tests I am all clear had scans and everything. Yet I still get pain, I have been in and out of work At least once a week i stay home. Either its the stress in this place, which I have realised is becoming harder to deal with since my op or I most likely need a change. My stomach where they cut the "growth" from pains peridiocally for no reason. I was at the doc again last week and they have me on cortisone and some other stuff I can sell on the black market.  

I have tried CBD it works for a while and then doesnt. I find making a tea with marijuana works the best for pain management and a restful night. Oh yes, I struggle to sleep, when I do, I am out for the count and cant even get up in the mornings. Most mornings I wake up in pain. I know its not anything compared to what you going through, but what I have experienced the last few years still wont give me an idea of your suffering.

 

So Cois, well done, You are doing great keep  on fighting!!!!!!