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

[ChrisF]

5 minutes ago, Cois said:

The most important thing is if you think something is wrong, rather go see a doctor.

I saw bleeding but thought it was just another bug in the water supply giving me a hard time.

And make sure your doctor knows of things that are wrong. The GP I saw didn’t really care about care. She was overworked. So switched to another Doctor. The doctor picked up on the 2nd visit that things were wrong.

If you have constant bowel problems rather go and see another doctor. If things does not clear up with meds there are something else that is wrong. Get the proper medical care. Get to another doctor if you see problems that does not clear up. Most doctors are just a money mill. Make sure your doctor knows your history, and just because you do not have a family history means nothing. I am on stage 4 with no family history at all.

 

Our medical system is badly broken.

 

On paper we have a "house doctor".  In reality I saw him twice in the last 15 years, for medicals for insurance.  He is constantly pre-booked for 2 to 3 weeks in advance.  So when you are ill you get to see one of the locums .... ZERO continuity !!

 

 

My sister is in the medical field, primary health care.  When her husband showed medical symptoms she took him to the GP and relayed the pertinent facts .... nope, let's try this tablet, than that .....  My sister insisted on a referal to a cardiologist !!  One visit and one test later he was put on the correct medicine.

[ChrisF]

4 minutes ago, Cois said:

Got a low blow today.

The diet the surgeon think I should be on from now on, means I will never eat anything again.

everything will be via a tube and will come in a bag.

so for someone loving food and something in the mouth it is a very hard blow.

we have to wait for the medical aid to approve the plan.

At this stage It seems like treating the cancer on my own with dewormer is an better option. The dietician wasn’t to happy with the proposal, and asked me I will cope, and I could only say that I will have to try and adapt and to make this work, but nothing per mouth sucks big time.

it has such a huge mental aspect that this might be the last blow for me.

Can they give you "food bags" to take on holiday ?  Is this something you can administer on your own ?

 

HOPE this news is not a ball-and-chain that ties you to the hospital ....

Edited October 26, 2021 by ChrisF

[Karooryder]

8 minutes ago, Cois said:

The most important thing is if you think something is wrong, rather go see a doctor.

I saw bleeding but thought it was just another bug in the water supply giving me a hard time.

And make sure your doctor knows of things that are wrong. The GP I saw didn’t really care about care. She was overworked. So switched to another Doctor. The doctor picked up on the 2nd visit that things were wrong.

If you have constant bowel problems rather go and see another doctor. If things does not clear up with meds there are something else that is wrong. Get the proper medical care. Get to another doctor if you see problems that does not clear up. Most doctors are just a money mill. Make sure your doctor knows your history, and just because you do not have a family history means nothing. I am on stage 4 with no family history at all.

So true Cois.

My brother is also in the healthcare industry and he always says "if it is more than a runny nose, a stiff neck or a sore tooth get a second opinion". Getting a second (or third) opinion on a more serious health concern should not be a last resort, it should be standard procedure. We tend to rely on one Dr, and patient-Dr "loyalty" often clouds proper judgment and proper treatment. Sterkte Francois!

[Cois]

28 minutes ago, ChrisF said:

Can they give you "food bags" to take on holiday ?  Is this something you can administer on your own ?

 

HOPE this news is not a ball-and-chain that ties you to the hospital ....

Just told Reinet that I am not sure. We will have to see how thing works.

I am going to be tried to the hospital because they need to supply the “food”

so either go on Holiday, carry on with my own diet and what we have been doing, or try to follow the doctors diet and restrict me to nothing and dump the idea of the holiday. I do not want to be a huge burden on anyone and being on this diet is a huge restriction on me.

[Plentipotential]

Go on holiday, food be damned, it cannot get much worse than what you have already seen off.

[Andrew Steer]

1 hour ago, Cois said:

Just told Reinet that I am not sure. We will have to see how thing works.

I am going to be tried to the hospital because they need to supply the “food”

so either go on Holiday, carry on with my own diet and what we have been doing, or try to follow the doctors diet and restrict me to nothing and dump the idea of the holiday. I do not want to be a huge burden on anyone and being on this diet is a huge restriction on me.

Only person who can make this call is you and Reinet... but from my side, I don't think spending your last days in a hospital bed is what you're all about. Suck every last ounce out of life in your remaining days - do not go quietly into that good night. 

[Cois]

Decided fudge this crap. 
going to go on this vacation. Even if I puke up every single meal, it will be worth it. The feeding bags can wait until  I come back.

 

[Cois]

Came out of the ER, everything went well.

just very hungry.

still attached to a BP system to monitor my vitals to make sure my heart keeps on working. 

[Cois]

Spoke to the surgeon this morning.

i can go home, as soon as Momentum approved my application for home based feeding.
Dr said it is easy to place the port needle, one just need to be super hygienic and clean when using the port as you will access the port 4 times a week and not once a fortnight.

Had a rather rough night. I can never sleep in the hospital. Have a bit of pain where the surgery was done. 

[gtr1]

Cois, just a comment my dad made many years ago. He had Chrones disease when nobody knew what it was, and dr's were experimenting all the time.

At 1 point he was told to go on a diet as the only solution. The diet was to boil everything. Even meat. He asked how much longer would that make him live. The answer was....No idea.

He said bugger that. he would rather die happy than eat boiled food for the next 20 years. He lived to just over 80. And probably longer than 20 years from when they wanted him to change diet.

So sometimes common sense must prevail, and you still have to enjoy life. Otherwise what's the point ???

[Cois]

Still not discharged from hospital. The doctor does not want to send me home before approval for the TPN has been granted.

the last application took two months. So there is no way I will stay here for two months. I will rather take my chances outside on my own following my own diet than a bag of liquid

So I am super duper frustrated with the surgeon.

there is also no contingency plan if the TPN is not approved, adding a load more of frustration to the whole situation. 

[Cois]

At last. The surgeon is sending me home today. He thought I was jobless and thus not in a hurry to get out of the hospital to save my job.

So he was shocked when I asked for a sick note.
I asked about the plan forward and he said I can go on eating till the TPN Feeding has been approved. The TPN will be to take up nutrients and the needed building blocks. But at least I can eat things that are easy to digest and that has a high load of nutritional value.
So now we can plan our vacation in the Cape.

[Robbie Stewart]

Awesome news @Cois

Come and enjoy time away and spend some quality time with Reinet and your aunt and uncle. It will be a huge blessing to everyone for you to have some joy for a change.

[Cois]

Just made our flight bookings.

We will fly out on Saturday 6 November and will return on the 13th of November.

can’t wait to get out and on Vacation. Just a few days of no worry will be awesome.

thanks to everyone that contributed to the vacation.

It means the world to us!

[Tjokkits]

Hi François..you are such a inspiration. I dont frequent the hub much but do check in every so often on you specifically. I am sorry for all you  are going through.

I hope you really enjoy your trip

 

Ive made a transfer to your account amd hope it helps in any way whatso ever.

 

Strongs mate

 

[Cois]

5 hours ago, copperhead said:

Cois, how you doing friend? I won't be on the internets for a day or two. I think you leave tomorrow for your vacation. If at all possible please just enjoy it. I hope it rejuvenates your body and mind. May you and your wife connect and let this time give you both a boost and time for peace. Safe flight, travels and holiday. 

Today is a bit tough.  Feeling of weakness is slowly creeping up on me again.   I struggled to get up the stairs this morning at the office.  Been having a few issues the last week with keeping food in.  This morning vomited up my breakfast toast while I was busy eating it. At least I did not vomit all over my keyboard or screen this time.

We fly out on Saturday morning.  And this break is needed.  I am just not sure how to keep my emotions under control as I cry at the thought of the generosity of the people here on Bikehub and my uncle and aunt for letting us stay with them for this break.  

To be honest I am not looking forward to the flight and the drive to the airport.  Will have to take along a few drinks to drink on our way to ORT.  But I am looking forward to the quite and the being off the grid for a week - Will be using Solar Power and rain water at  my uncles.  Eskom does not have infrastructure there.  Will be online as they have a great wireless connection in the area.

Edited November 4, 2021 by Cois