The very Best Cancer Care on a Shoe String at Chulalongkorn

[al007]

The very  Best  Cancer Care on a Shoe String at Chulalongkorn Hospital BKK -Colorectal and Prostate 

 

Please appreciate this is written in UK English and my humour it is likely,  will only be understood by those from the UK, it is meant to be helpful and not unnecessarily critical, I have learnt a lot during these experiences the hard way, many things were different from what I had been expecting, if I had known all I have written here when I started this journey my life would have been less stressed

 

There will be those who read this and call it yet another rant and they are entitled to their opinion, my question to them is why read what I write if you disagree with what I say, do not waste your time or get upset, life is too short, just use the block facility so I do not bother you

 

There are many who have had far more hospital experience than me, in Thailand, but few sadly if any; have written up their experiences

It is similar on  medical malpractice

 

I have written this to try to help others, I am severely dyslectic and only type with one finger

 

This thread should be read in conjunction with two others threads that I have started (both of which have been well read)

 

Palliative Care and Pain Suppression

 

 

Healthcare on a Shoestring for the Elderly and uninsured

 

 

Also read in the General Section the thread what to do when a person dies in Thailand, to which I have contributed many posts 

 

 

 

 

I  share this for the benefits of others

 

Chulalongkorn is a very well funded and respected medical teaching hospital, I am told the spend per student by the University, is 400 yes 400 times higher than similar facilities in Thailand, the reputation of its Law faculty is of similar very high standing. Unlike many Universities in Thailand that are not good I believe this one would rank well on a global basis

 

I believe this to be the very best Cancer facility in Thailand, and by a long way, they are spending billions on a new state of the art particle radiation facility and building a whole new wing, to house this

 

When I identified cancer no one told me Chula was of such high standing, the closest I got was the comment maybe the technology at Chula is better than KhonKaen, from the American John Hopkins trained Oncologist, resident at Chula

 

Initially when choosing I thought Chula was just another old government hospital, and a bit run down, God looked after me and I wound up there despite myself

 

Even when my colorectal surgeon asked where I would like to be operated on like Bumrungrad or Chula, and I asked the question, what was his choice he said he happy with both, ( again sitting on the fence) personally I believe the number of surgeons and people involved in my major surgery was way higher and better than could have been achieved at Bumrungrad or any other private hospital, regardless of cost and money

 

I had Dr Chucheep being assisted by three qualified general surgeons doing their specialisation in colorectal surgery, Bumrungrad I bet only one assistant

 

My final bill including private room was below ten percent of what was quoted by a large private hospital chain here in Thailand

 

I do not particularly wish to talk on open forum about the financial side of this but if anyone needs more specific information for a valid reason I will of course talk about the detail on PMor the telephone

 

I am self insured and also comfortable financially but no longer wealthy, two very expensive divorces in retirement coupled with retiring at 50 have stretched financial resources  a bit

 

 

A very big problem is communication and understanding how the system works, despite big surgery, I have still have many unanswered questions, like what are all those stitches in my ass, are they self dissolving ?, Doctors may not spend enough time discussing matters with the patient, when will the mucous discharge from my ass stop etc etc

 

For the last six years at a private hospital in Isan I had regular medicals, for 3/4 yrs I had blood in my stools, one night I haemorrhaged some two to three litres of blood, I wound up in the ICU,I also had prostate problems, I had an MRI scan at an out of hospital facility, I had a CT scan at a hospital, I had a colonoscopy, all these showed to the professional there was maybe cancer present I was told not to worry, no biopsies were done

I wrote a five page letter to the hospital voicing my concern, and was advised I was worrying unnecessarily, the doctors gave me the answer I liked so I did not challenge strongly

 

When I came to negotiate for a settlement for gross professional negligence, all my files were in order, I had copies of everything on my file, start a fight and you will be deneighed access to your file or material gets “lost”

 

I negotiated a good and very remarkable, for Thailand settlement, with only very limited use of lawyers at the  end, and even then I had to draft the settlement deed

 

My urologist  before I decided to go to India, kept  saying to me what did I want to do, to which I replied I wanted him to tell me not ask me

 

I posted on TVF I had prostate problems and had to get up twice in the night to pee, the consensus opinion was why are you complaining, only twice, well it disrupted MY sleep

 

To cut a long story short I researched and went to India for Holep surgery pretty uncommon in Thailand, at the same time I asked for another colonoscopy, two different cancers were uncovered, I was in a state of shock

 

Dr Ashi in India told me many patients went to him clear of cancer despite 12 or 24 section biopsies, and in 60 % of cases the biopsies from the Holep showed cancer, ie they had incorrectly been diagnosed as not having cancer when in fact they did

 

I have referred three other people to him for similar surgery, and that have all been well satisfied

 

I consider myself so lucky I persisted and went to India because at least I found two lots of cancer at relatively early stages, but then I believe we make a lot of our own luck

 

I have become very accustomed to sending large files like MRI s via the google drive  drop box, works well

 

 

I returned to Bangkok  from India and followed most of Sheryl’s excellent advice, I took multiple opinions, from two colorectal surgeons one in Bangkok and the other in Phuket, the leading two in Thailand, a top Urologist but whilst very competent by my book way past his sell buy date, I consulted several Oncologists in different parts of Thailand

 

I could not have achieved what I have so far without Sheryl’s input, a very big thank you Sheryl

 

I went everywhere from the most expensive down to several government hospitals, consultations are NOT expensive, even at the expensive hospitals make sure you request and keep copies of all notes, MRI s etc etc, I am at MRI/CT scan no seven

 

I saw Oncologists specialising in Chemotherapy, and Radiology, in KhonKaen, Srinakarin teaching hospital,  Udon Thani cancer hospital, and Chulalongkorn, the top cancer facility in Thailand

 

I chose Chula since it had by a long way the most sophisticated radiology equipment and the doctors were all top quality, not past their sell buy dates and around mid forties

 

I was assigned a team of Colorectal surgeon, Radiologist, Chemo man and Urologist, many trained in the USA

Unlike the UK NHS here you can choose your consultants and that is the key

 

The hospital system here is pretty unregulated, but personally I believe the government hospitals are maybe better regulated than the private ones some which are immoral money making machines, with no indemnity insurance, at least my problem hospital admitted its liability and paid up

 

I very nearly gave up my claim, I met several firms of bad lawyers in Bangkok who claimed experience of malpractice, when in fact there only real experience was their own malpractice

 

I soon became aware that I was better qualified than most of them and was not prepared pay out 100,000 for them to just asses and then ask for more money

 

I was given a couple of names of pseudo consumer organisations but they were equally useless in my view

 

I then tried lawyers in the north, they wanted my 750 page files translated into Thai before they would consider, and the big fat crooked lawyer wanted me to buy him lunch, I like the man socially but professionally NO

 

Another lawyer kept me waiting for two hours at the first meeting then after five mins said he had to go and scheduled another meeting that. After waiting two hours I told him he was not a God or King, and fired him, generally when in life something starts badly it will only get worse

 

I was about to walk away but kept thinking, I knew of another man in Issan who had been through the same loop but taken five years to settle, I did not want this

 

Sheryl had told me categorically by PM she considered on one piece of evidence alone I had a watertight case

 

I thought and got together four more separate incidents that stood up; each on their own merits, it was impossible in Thailand to get other doctors to condemn Doctors in Thailand

 

I got opinions from Doctors in India, The Macmillan hospital in the UK , all for no cost but by sending my evidence one at a time and enquiring if what I sent showed problems and what would the cost of treatment be, never once did I disclose my  true reasons

 

I also had from a  highly respected colorectal surgeon, from whom I had sought a second opinion at a large Private Hospital chain, (note owned by one of the richest men in Thailand, and he keeps getting richer) a very expensive quote

 

I told my wife to request a meeting with the non executive head of this hospital who we also knew socially, she was very frightened

 

I said before the meeting if I fail I walk away, I went armed with what I had spent so far, on Radiation Chemo and in India, I had four separate doctors all being accused, I had four/five separate lots of evidence

 

I told CEO we had a problem, I told him about the letter I had addressed to him personally and sent recorded delivery over a year ago, I said my inclination was for am amicable settlement, he asked for a week to consider, I agreed

 

A week later, he was on time, I considered that good because he was always running late, he commented I had been given full copies of my file, I explained that was for pension related matters

 

I knew he was worried, he started telling me he could drag this out for years, I reminded him there were both civil and criminal proceedings that could be brought here, and said please stop fencing and wasting both of our time, he made a derisory offer I went quiet, I said nothing, he added he wanted to help me 

I told him if I died in the meantime as a result of negligence then the claim would continue and be far greater

 

I told him I would see them all in court, and stormed out very upset

 

I told my wife now wait if nothing happens we walk away

 

Three days later he called my wife and said he was worried about my heath, would I consider another meeting, my wife told him she would try and persuade me

 

I knew we were on the home straight, I went to the next meeting lawyer in tow, but instructed to keep his mouth SHUT

 

I was given another offer, I smiled, and started to leave, he upped his offer another 30%, I immediately agreed

 

I was paid out ten days later, and as a result my wife got a new Honda HRV

 

Again nothing ventured nothing gained, could I have got more maybe, but a good deal is where every one walks away a little hurt but also happy

 

 

 

 

 

 

The deformations laws in Thailand stop naming and shaming and protect the crooks and unscrupulous , you may commit both a criminal and civil offence if you name regardless of whether not you are correct, unless you can prove the claim and disclosures are in the public interest

 

I underwent eight weeks of chemo and radiation, and the consensus was the cancers had been neutralised, and moved onto monitor and wait and see, I was monitored with blood tests, MRI 3T scans , ultrasounds, and more colonoscopies at three month intervals, requiring about a week every three months at hospital in Bangkok, nine months on the cancer came back, and surgery was recommended

 

I had been under Dr Chucheep for a year but knowing surgery was coming I did even more checking on him. and found the following on U tube

 

 

It explains his  minimally invasive techniques very well

 

None of the doctors were aware this was on Tube, the interesting thing is the philosophy of Dr Chucheep, its worth asking a wife to listen to the narrative and translate it

 

At this stage I again checked out India, for surgery, but chose Bangkok, both locations technically were maybe on a par, but Thailand is my home and wife’s country, Thailand also came out quite a lot cheaper, however cost did not weigh heavily when deciding on Thailand

 

At this stage I cleared all my assets to my wife of ten years, prepared an Advance Directive/living will, being very specific only one heart restart, no life support machines, I became very stressed and nervous, I really believed the anaesthetic might kill me, by the operation I was down 23 kilos and want another twenty down to be 100 kilos at 6ft 2 in

 

On the Advance Directive, prior to the operation it was discussed with Doctors they all liked it and said it helped them greatly, and removed them from some difficult decisions, they commented it was clear and easy to understand, I did not ask them to sign their agreement at this stage, my wife had an original with her at all times, just in case, the nurses generally did not like it, and when leaving a nurse wanted me to take it back despite my wish for it to remain on the file, which I did, anyone who wants a copy please contact me and I will send

 

I also had all the paper work in place for body donation again very easy, and now have donor card

 

My blood pressures getting higher all the time, anywhere between 195 and 125, I was given no stress test despite questioning this, I had argued too long and too much I let this pass, with a lot of difficulty, I am very interested on input here

 

I was also horrified at the thought of a colostomy bag, just totally unacceptable to me, I was not sleeping properly and having far too many nightmares in the night

 

I also bought a very expensive zero gravity large chair where I can relax and take pain away from my ass and hips, it is true luxury; as at the price I paid so it should be

 

It was almost impossible to get cost estimates from Chula, a private hospital had given me a written quote of 1.3M Baht, eventually I got a hospital employee  in the finance dept to put a note on my file of between ***Baht and ***Baht, they would not give me a copy so when taking the file on to the next station I used the camera phone to take a copy

 

I was asked for no advance payment or credit card imprint, I paid at 4 days and on completion

 

I liquidated assets so I had four times the highest figure in cash, in the bank, just in case 

 

My surgery was originally scheduled for early November, some five weeks after it was decided surgery was needed, not an unreasonable time I felt

 

In early October I went to BKK for a day of pre assessment, we did the overnight (6hr ) first class bus and got to the hospital at 7.00 am, blood tests, ECG, and doctor interview, I brought my blood pressure records from the last two months with me, where I averaged 135/80

 

On arrival at the hospital the nurse wrote down hypertension when my pressure was at the high end of 180

I asked the doctor about stress test and was told not considered necessary, I am very interested on other views here

 

The doctor when I showed him my previous blood pressure levels agreed there was no big problem

 

When I told the doctor about my hip problems he said I would be X rayed before the operation as this could cause problems

 

We discussed my advanced directive and he agreed it should be put on my file

 

I was told to stay on a soft diet and take laxatives the days before admission

 

After leaving the doctor the Nurse said I had to see a second doctor because of hypertension, she had detected, I told her to check with the doctor that she did, and changed her mind

 

Then she refused to add my advanced directive to my file, and again I had to fight to achieve this, generally I found some of the nurses difficult

 

We were staying overnight in BKK and out at dinner when the doctor called and wanted to bring my operation forward by a week, we immediately agreed, in ten days time

 

We had a busy ten days at home finalising everything, including the possibility I might not survive, and everything was set up so no probate in five different jurisdictions not required see posts on what to do when someone dies in Thailand

 

All was in place, I was full of fear, we returned to Bangkok and had a night in a nice hotel, we had a light pasta dinner, and I got drunk, I told my wife I hope not the Last Supper

 

Wednesday Oct 25 

 

Hospital at 7.30 am, checkin was slow, but the to the 25th floor of very new building finished only six months ago, overlooking Lumpini Park, very beautiful, big private room, with sofa for my wife to sleep on, cost 3500 baht per night, could have gone public ward route but then wife only allowed between 10.00 am and 8.00 pm, I needed my carer and interpreter more than ever

 

 

 

 

 

 

I personally could not have coped with a public ward

 

My blood pressure over 180

 

I have several doctor meetings am scheduled to have my hips  X-rayed at 5.30 the following day, (the day of the Kings Funeral)

 

Large flat screen tv but sadly no internet

 

Given sleeping pill

 

Thursday Oct 26, 

Stomach  being purged and emptied, awful stuff, then the loo about 14 times until all coming out clear

My diet is now clear liquids only

 

More doctors and anaesthetists 

 

Blood taken to match for blood bank

 

My blood pressure coming down but am very stressed given heavy sedation at night to calm me and help me sleep

 

Friday Oct 27 operation day

My blood pressure is down to 130, I have shower and think what am I doing, I am at the moment OK , I am having an operation that at best will see me in a worse state, with the dreaded colostomy bag, I am very close to cancelling

 

More blood taken again to double check for blood bank

 

About 7.30 onto trolley and off to operating theatre, NO PREMED to my horror, wife still with me into operating theatre, many robotic arms, many 32 in monitors maybe six plus, many little people all in green, they start to connect me I see my blood pressure is already up at 160, stress I know, then oxygen anaesthetic mask put on and gas starts starts coming, breath deep I am told, I am I say, I am still here I say, then I am gone, out cold for the next many many hours

 

This bit I can say little on other than no memory and no pain

 

About 7.00 pm I am coming around, only six beds in the ICU which is very small for a hospital of this size, maybe because building on going, I was told unavailability of ICU would have postponed the operation

 

I am visited by my wife and the doctor, I am attended  the first night on a one to one basis by a nurse sitting at the end of the bed, my legs are in pressurised band pulsating with pumped air

 

Sat 28 Oct Recovery Day 1

3.30 am am in great pain, after a lot of arguing with the nurse given more morphine, and out of it

 

About 5 am I am given a bed bath

 

6.30 am one of the team of doctors comes , he agrees more morphine on demand, paracetamol on demand and small quantities of water, and says they are worried about thrombosis and must keep legs in pressure jackets, for the next 24 hours, but generally I held up very well, also worried about build up of flem  in lungs I am given breathing exercise machine, that I start using despite pain when taking a deep breath

 

At this time I have great hip pain like knives being stuck into me

 

My mouth is so parched and dry, I have still not been given the promised water, I watch the clock trying to be patient, well after waiting for more pain relief and some water for an hour plus, I explode, am told they are busy, then a nurse from the deep south of Thailand shouts at me, and its like a brawl in a bad bordello, not that I really know what one is like, the nurse shouting at me and me shouting back, of course soon there are many nurses in attendance, I get my water and pain killers

I ask for the nurse to call my wife there is a big communication problem, I speak no Thai, she refuses, I am very unhappy

 

Then I have a nurse from Issan, so upset I have been so badly treated, and I am trying to calm her, and keep telling her to calm down

 

True Thai tv soap

 

In any case they decide to move me, (or evict me, too hot to handle ), back to the ward, they tell my wife to leave, I tell her to stay, unless they can provide someone whose English I can understand, after a fight they let her stay but being quiet and Thai. the confrontation upsets her

 

Back on the ward, and a nurse says they have no pressure equipment, I tell them the doctor told me to see they took it from the ICU 

 

I am then told tomorrow they will get it, I explain totally unacceptable, if there is a risk of thrombosis and the doctor says do something we do it, I did not survive surgery to die shortly thereafter

 

Either find the equipment or bring a doctor to say not required, well within the hour the necessary equipment arrives, surprise surprises

 

The doctor tell me  in the morning the first 36 hrs are critical

 

I am given a bed bath

 

Nurses come every two hours and turn me all day and through the night

 

Around 8.00 pm I am told I am developing fever, I ask if I am still on IV antibiotics, I am told no, when I had surgery last year in India I was on antibiotics for a week after surgery

I become worried and agitated, I know my immune system is low as a result of Chemo and Radiation, I know my red and white cell count are low

 

Cold packs are put on my head and body, I am given paracetamol, I state I have not been visited by a doctor for about 12 hrs and am I am worried fever does not take over

 

I can not get a doctor at the Hospital, I call a doctor friend in KhonKaen, he says insist they get a duty doctor from causality 

 

I tell the nurses this and eventually a doctor comes, he assures me he has read my notes and says he is aware of my low immune system, he said Chula do not for this surgery give antibiotics other than one shot after the operation, he promises to come back and check 3 hrs later, I thank him  for reassuring me

 

Earlier in the day I had seen nurses not wishing to do what the doctors stated had  to be done, I was very wary

 

Overall the nursing was of a very high standard, but if only one does the wrong thing I could be a dead man

 

Generally I am a little untrusting of the medical system in Thailand, for good reason

 

I had a difficult, painful and stressful night, my bones and joints were giving more pain than the operation, the constant turning also did not help, I appreciate the reasons they do this

 

I was also recovering from even hours under anaesthetic, which also has its own problems

 

Sunday 29 Oct Recovery Day 2

 

The doctor wants me out of bed I am in pain but know the theory is get the patient moving

 

My legs are unplugged from the pulsating air pump

 

Slowly slowly I try to manoeuvre, my wife wants to help but I say I have to do this alone

 

I slowly slowly move onto my side, manoeuvre the electric back lift and get sat up with my feet on the floor, I sit there maybe 15 mins, and then push my body up, I am standing 36 hrs after coming out of surgery, I slowly move around hanging onto everything, I then  fall back on the bed and rest

 

I continue this all day up a little then lie down, by the end of the day I can move from one side of the room to the other

 

I am still connected to drips and catheters, and also on the bed on supplemental oxygen, this makes moving even more difficult

 

 

Monday Oct 30 Recovery Day 3

 

The doctor asks if I can manage on room oxygen and disconnects the saline drip, I am left with the catheter in my penis 

 

My fluid intake and out put is all being monitored , but I am not told

 

The colostomy bag starts to bubble and work

 

I can sit in the shower and wash

 

In the afternoon the catheter is taken out, and painful, then they check how much urine is being retained when I finish peeing they are worried about the effects of their operation on my prostate and bladder, as a result of Holep surgery

 

This is done by inserting a catheter and putting me in great pain, they do it again three hours later and get me screaming

 

We all have very different pain thresholds, mine are I believe some of the lowest

 

At this stage I say no more until I talk to the doctor, he  then agrees no more, this is a very sensitive area for me

 

I now have only one drain inside me

 

In the afternoon my wife is given her first lesson on stoma and colostomy care, very critical if not done correctly we are informed infection and gangrene can occur, leakage must also not toke place

 

There is a plastic stoma connected to my large intestine, there is then a gasket flag held in place by sticky plaster and silicone the sealant

 

This requires daily maintenance three to five  times a day, it has also meant I have changed the way I eat to less each time and five times a day

 

Gas also builds inside and requires releasing, originally I said this is wife job, well already I am doing the daily bit

 

The smell originally made me gag and nearly pass out I am over this now, we spray with air freshener before starting and again after closing

 

We are now using rubber bands to keep the bag shut, rather than the long plastic clip

 

If the bag were to come open by mistake there would be a major disaster, smell and sh*t everywhere, with care I hope we can avoid this

 

If the bag gets too full and pressure builds again difficult to empty

 

Then every three days major careful service required, has to be done by a well trained person, my wife can do this

 

I am very interested in talking to anyone with a colostomy bagged would be appreciative of help here

 

By 8.00 pm I am very tired and dozing, then there are at 10.30 pm twelve trainee nurses in the room all trying to calculate what I have drunk in the last 24 hrs, no one asks me, I have had water, apple juice, a cold lassi and there are maybe six open bottles, they have no clue and without my input no chance, they all depart with a sensible approximation of 1.2 litres, some only came up with 500/600 cc some had 3 litres

 

I doze again I am still being repositioned every two hours, and have great hip pain

 

Around mid night a different group prodding my body round my colostomy bag, being given a course on colostomy bags the the head nurse wants my wife participation, at this stage I say sorry we are both too tired and exhausted please all go and come back in normal hours

 

By now My head is in overdrive and I hardly sleep

 

 

Tuesday October 31Recovery Day 4

 

About 5.30 am I am just dropping off to sleep and the first of four doctors arrive all happy and awake asking how I am doing, and I do say very stressed and not well

 

Dressings  were removed from my ass

 

Then the drain removed without warning again had me in pain and screaming

 

Blood and mucus coming from anus

 

Continue moving around the room, at this stage can also move around the whole floor and shower myself

 

Dr Chucheep head consultant arrives around 10.00am by which time I am a little more hospitable we discuss a lot, he asks about the hospital food, I reply being European I can not eat wet rice and water and dishwasher soup, he says I am doing so well, he will allow me to eat what I want in small quantities

 

My wife goes to Tops and brings some fresh  raw salmon, some zero fat yogurt some honey and sandwiches with the crusts removed, I am in heaven, until a nurse arrives and says I can not eat that, I explain the doctor told me to eat what I want, and thats what I propose to do

 

Told I can leave on Wed if I wish or stay as long as I want, I opt for Thursday discharge I am still very weak, I believe it would have been foolhardy to leave the safety of the hospital too soon, and I would advise someone else to stay at least another day more than I did

 

I also request before we leave on the Thursday my wife does the big service of the colostomy bag under the supervision of a good nurse to see all is ok

 

I also request fit to fly certificate

 

Wednesday Nov 1st Recovery Day 5

 

A better quieter day, all the new routines are being got used to

 

I am very amazed at the speed of my recovery from the operation and anaesthetic, by now I am only on paracetamol for pain

 

I consider this was pretty major surgery, well for me it was

 

Thursday Nov 2 Recovery Day 6 and discharge

I was given follow up appointment and discharge papers, but not seen by a doctor, they forgot to give me blood test papers, my wife went back and got them on Friday

 

We check into a nice deluxe hotel close to the hospital just in case

 

Monday Nov 6

Blood tests

 

Thursday Nov 9 

I have follow up appointment stitches removed, get the lab reports on the parts of intestine removed and know whether or not more chemo and plan for reversal of colostomy

 

Friday Nov 10 midday flight back to KhonKaen

 

 

Summary of Surgery

 

My overall conclusion the very best surgery and doctors possible to find  any where in Thailand, the overall cost so low as to be almost irrelevant

 

Nursing care, well the best nurses are all from Issan; but overall excellent some minor irritations

 

Biggest problem communicating and my lack of knowledge of the Thai Language, my fault not theirs

 

What could have been improved, more time from the doctors explaining to me what is happening

 

I believe the Chulalongkorn is a very safe  and competent place to be, and rate 9.5 out of ten, I do not give 10 out of ten ever

 

I doubt if any other hospital could have achieved a nine probably at best 8.5

 

I believe better than  both the UK NHS where you also have no choice over your surgeon, or India that has a lot of top class medical facilities with some equally excellent doctors, also no waiting time of any consequence

 

A very satisfied customer

 

I also say thank you God for your guidance, and looking after me; and  to my wife, without whose love and help this could not have been achieved

[lopburi3]

Comments where I can:

Was told by another Bangkok Government hospital that if blood pressure was (I think 175 - at any rate what I had at the time) they would not operate (bladder removal due cancer) (did nothing positive for my blood pressure).  Luckily it was lower on next visit and cardio did permit.

No ICU prevented my operation (on OR table when decision made) and reschedule would have required wait of 3-4 months (bottom of queue) so not something you want.

High blood pressure at private hospital had cardio perform chemical stress test prior to surgery.

Have urine bag for last 15 months and change patch every 3-4 days.  Use a little filler around opening and heat with hair drier prior to placement - then smoothdown with cotton stick to make good seal and cover edges with medical tape (which seems to keep it attached very well).  

[al007]

Lopburi thanks for your input, have now added hairdryer to my service kit, I believe a full colostomy bag to the intestine may be more complicated with more problems, like gas build up

 

Blood pressure, yes I was worried my fluctuations peaks might affect me being accepted for surgery

 

Which is also why I took the previous months history from home

 

I also look at my fluctuations, so long as they do not last too long as positive, as they test the system  under load, and so far so good I can cope

 

Do I have hypertension probably not

 

I have been learning about "this bag" and finding out what I can, it seems explosions and leakage at night are far from uncommon

 

I now set the alarm to check at 3.00 am

 

I now use two rubber bands, I never tied my yacht up with only one line

 

I monitor the bag constantly, especially for gas build up

 

On my research many people have a stoma nurse, and the after care from Chula is not strong

 

I propose to visit Srinakarin University  Hospital in KhonKaen when I get home and try to find a stoma nurse/expert, in case help is needed

 

On stoma supplies I got two months supply from Chula but the cost was pretty lost in the main bill and despite asking for breakdown never really got it, I need to find supplier in KhonKaen, I know a large pharmacy, who gives me Valium and Tramadol where I can start

 

I had blood tests today at Chula including PSA, that I requested, and interestingly the overall cost of many tests was 650Bhat

I have in KK paid 750 Bhat just for a PSA test at a private hospital

 

I have to remember my current doctors are only monitoring the colorectal cancer and not the prostate, hence I requested the PSA test, so easy when other tests being done

 

NO INSURANCE WARNING

 

Please do not believe you can necessarily do as well as I do,  on costs, only last weekend there was a post of a man in Pattaya being charged 700 pounds a day who had found his insurance was maybe not valid

 

If it had been me, I would have avoided this pitfall by first going to a govt hospital and then getting as is often required pre approval  from the insurance company first, most have 24 emergency numbers from the UK before moving to private.

Just because you may have insurance, and have paid for it no way does it guarantee it will payout, many people forget,or do not know this

 

The consequences for this family who do not have a lot of financial resources, is terrible both financially and emotionally

 

Note when I went for surgery I had cash available in my bank, of four times the maximum expected bill, just in case

 

I am still looking for others with colostomy bag ! !! !!!

 

In any case so far so good

 

 

[lopburi3]

Found a lot of information on YouTube videos for stoma/bags and indeed most of it was for your type so probably be a good learning tool.  You are right no gas in urine but it does try to eat away under the patch so had issues first week or two (until learned I had to lie on back or right side only when sleeping).  But have not had any issue in last 14 months as long as change every 3/4 days.

I have been buying Convatec from local drug store but see Aliexpress now has Chinese brands for sale so that might be a reasonable price option without insurance - I do use them for night urine bags.

 

[al007]

Progress, yes Utube very helpful, but I needed to be reminded to go there, thank you

 

Hospital set me up with Convatec and as it is working and no reaction to the seal propose not to change, we make our own luck

 

As also only a limited time hopefully will stay as is with convatec

 

Not sure I want to risk a breakage with a full bag of s***, so will stay with convatec, two part system a lot more mess than just pee but even that is pretty bad

 

Washing and reusing the bags, of course can not do same on gasket/skin barrier

 

Bought a bag cover from Etsy  thus I will then have confidence to resume massages

 

Ebay have a big array of products

 

Very amazed how quickly I am accepting the  truly unacceptable, I nearly did not have the operation, even the morning of the op I was thing of saying no !!

 

I am at Chula on Thursday  for many things and path lab reports as well and plan not to leave until I have got specific prices, and then hopefully I can persuade pharmacy to match, from what I can see prices ex Chula were very reasonable

 

My favourite Lazarda was very limited

 

Having already bought about a three month supply I now find out the stoma may change sizes, just hope what I have will still have enough tolerance to fit, but what will be

 

Am not prepared to compromise on this item and its fit

[yooper]

2 hours ago, al007 said:

Very amazed how quickly I am accepting the  truly unacceptable, I nearly did not have the operation, even the morning of the op I was thing of saying no !!

 

Thank you for the reminders of how fortunate most of us are. Your determination, optimism and even some humor in the face of darkness are immensely refreshing in comparison to most of the blather we see around us.

[al007]

2 hours ago, yooper said:

Thank you for the reminders of how fortunate most of us are. Your determination, optimism and even some humor in the face of darkness are immensely refreshing in comparison to most of the blather we see around us.

Thank you it encourages me to continue

 

I continue to learn it is like being born we start with little knowledge, some people choose to stay that way, not the case with me

 

In our training on the bag the question of adhesive wipes was never mentioned, it is important the skin is well cleaned and dry before the new gasket is put in place, the adhesive wipes are used for this

 

If not done correctly all will start sliding around, not a good or comfortable idea

 

Then there are barrier rings, thanks only to U Tube I know about these, but can see what they do but not sure why I do not have them, or was it just like the normal Global House response out of stock, I shall enquire more

 

The hospital told my wife to lubricate with vaseline very lightly one surface of the joining tupaware pop seals, however it is better and more logical to lightly lubricate both surfaces as one would do in engineering assembly

 

Can't sleep but alive, a week ago I was in big pain so moved a long way forward

[lopburi3]

You mentioned stoma was plastic I believe so did not caution - but if normal (for urine) intestine you want to make sure patch is cut large enough that it does not touch when you twist and is smooth enough not to cut (as you will not feel it).  Yes keeping clean when making change is a priority and a little baby non fragrant shampoo will help remove such.  No need for special whips as paper kitchen towels work very well and do not leave any moisture or oil.  It is good to have the liquid spray adhesive remover when removing patch so as not to pull skin (or hair).  Then shampoo/drips of water to clean.  If someone doing for you can tape small plastic bin bag below patch area to catch water and have a baby pad below.  You should not need rings unless concave at stoma.  Believe most patch here are the cut to order type - which is what I use as stoma is almost never round.  You need to take finger and smooth edge after cutting.  I do use a two piece system almost the same as you except bag is made for urine.  The patch is designed for your use and is Convatec Stomaheslve 401575 and costs 140 baht at regular drug store.  My bag costs 165 baht.  As for the vaseline do not find it is needed if line up rings and then use finger in circle to press together - just do and then do again.  I take off for showers so do this often.

[al007]

2 hours ago, lopburi3 said:

You mentioned stoma was plastic

I gave incorrect information  here because thats what I thought the first time I saw it !, no one had explained too much to me at that stage, and  I was in such a state of shock and horror, and non acceptance thats what my brain suggested plastic, to begin with I could not even look at it

 

Thank you lopburi you give me a lot more helpful information

 

My stoma is like all others and just pink intestine

 

To day is only day 12 and am in all honesty progressing well

 

However had a very difficult night was awake for 1 1/2 hrs around 1.00 am, then around 3.00 am two more hours, three bag empties last night but then sleep to 10.30 but feel awful really want to sit on toilet and have a good s***

I check my blood pressure a bit high but OK at 145/80 and pulse 78, my temperature shows normal, I am still loosing small amounts of blood and mucus from my ass

 

All in all good progress

 

We are staying at Novatel who took after us very well, extra pillows, and six large bath towels, i have a plastic sheet with us to protect their matteras  

 

I will shower and then rest again, the hotel has wonderful buffet lunch at 250 pp including taxes, I can eat some soup, some sushi, some prawns, I stay away from mussels, they were bad for me before the op, I can get coffee and juice as well

 

I eat slowly and chew a lot, I am also eating rye bread sandwiches and zero fat yogurt all from a nearby Tops Supermarket, also a little raw salmon

 

I monitor how much and whats in the bag all the time and try to keep my liquid intake reasonably up, with sensible thinking I hope to avoid blockages

 

We also have a couple of cocktails each evening during happy hour two for one

 

We are very happy with our hotel choice the staff are very caring and smiling PLUS the price is very affordable

 

I have to go slowly and take it easy

 

I am doing my list for the hospital tomorrow, I will rank my questions in the order of priority as I do not expect to be given enough time to ask them all

 

The rod will also be removed from the stoma, that has no nerve endings in it, I may take some valium before going as this again scares me, just the thought of it

 

Some may say I am nuts and they might be correct but these things are very real to me

 

Many I suppose at my stage have gone home to their home countries by my stage, however Thailand is my adopted home and I do not propose to change it

 

They are starting to cut the rice around our house and I look forward to getting home

 

What ever the doctor says I am going home for a week even if I have to come back a week later for more chemo

[lopburi3]

Expect the stoma process will fall into place with a little more time - I was in hospital about 10 days but still had some issues later.  For mine had two tubes to allow the stoma to heal with holes and one was removed without knowledge in routine patch change at home prior doctor visit to remove (doctor checked inside to make sure but was not there and later found attached to old bag).  Should not be any pain pulling out as only skin around stoma has any feeling.

[Suradit69]

On 11/5/2017 at 11:30 AM, al007 said:

why read what I write if you disagree with what I say

How can one agree or disagree with what you say without first reading it?

 

 

 

[Ron19]

A post containing a link to a commercial site has been removed.

[Antonymous]

Thank you for sharing your journey with us OP. I'm sorry that you have been through all of this.

I wonder if you are familiar with Chris Wark, who has a website that you can easily look up (I am told that I cannot post the link)?

Chris had Stage 3 colon cancer. He was scared into having surgery by oncologists, but refused chemo and further medial intervention. Instead he healed his cancer naturally and went on to become an advocate for natural cures for all cancers. He is regularly invited to give keynote speeches at cancer related conferences and is well respected. He has developed a 10-part video program that teaches you exactly how to heal cancer.

I have subscribed to his courses and I thoroughly recommend to you and to anyone who has cancer or better yet, anyone who wants to PREVENT the onset of cancer, to check out the website.

Although you have already been through alot of medical intervention it is so important that you go forward to heal and this information may be of great help to you and to others reading this thread.

[al007]

21 minutes ago, Antonymous said:

Thank you for sharing your journey with us OP. I'm sorry that you have been through all of this.

 

I wonder if you are familiar with Chris Wark, who has a website below:

 

https://www.cancertutor.com/chris-wark-square-one/

 

Chris had Stage 3 colon cancer. He was scared into having surgery by oncologists, but refused chemo and further medial intervention. Instead he healed his cancer naturally and went on to become an advocate for natural cures for all cancers. He is regularly invited to give keynote speeches at cancer related conferences and is well respected. He has developed a 10-part video program that teaches you exactly how to heal cancer.

 

I have subscribed to his courses and I thoroughly recommend to you and to anyone who has cancer or better yet, anyone who wants to PREVENT the onset of cancer, to check out the website above.

Thank you and appreciated

 

I will definitely explore the link you kindly post

 

I do not know if I could or would be prepared to face more surgery, but at the moment that is not todays problem

 

Three weeks ago I felt reasonably fit and then have surgery and today have that awful bag and feel weak and drained

 

I will have the reversal later but then worry my sphincter in my anus has been damaged

 

I believe very strongly there is a time to say stop no more, I said this on a minor matter, to some people; of a catheter being stuffed up my penis that gave me pain, my dick over the years has served me very well and given me and a few others much joy, it needs respecting not abusing, an odd kiss goes a long way !!

 

Again a reason I did an advance directive/living will before surgery, there comes a time to stop

 

I am in favour of euthanasia, I know it is not legal in Thailand but that surely does not preclude talking about it in jurisdictions where it is possible

 

I can go to Holland and smoke illegal substances in Thailand, legally there

 

I have no wish or intention to break any laws in Thailand, just for the record, or encourage others so to do

[al007]

1 minute ago, Antonymous said:

 

Best of luck. Absolutely do not give up. Chris Wark has many stories of people who have been through all of this, almost given up and have then healed completely.

Thank you as a consenting adult from a democracy of sorts UK !!

 I believe I am allowed to read whatever I so wish

 

I am also allowed to travel without insurance

 

I am also allowed to take a private yacht to sea without a license

 

I also accept US citizens have the right to carry guns, however I do not agree with that

 

Fifteen years ago I was in Los Angeles on my very beautiful yacht, I went to a very large gun shop to buy a Very pistol that only fire flares, only to be told they are not allowed in the USA as they are considered dangerous, I commented about all the automatic rifles there, often is no logic in this world

 

On a properly documented British Yacht, it is legal to carry firearms without any license, a useless piece of information for many

[al007]

1 hour ago, Suradit69 said:

How can one agree or disagree with what you say without first reading it?

 

 

 

You are absolutely correct, however I feel my comments have often upset some TVF members hence my comment

 

My intention and wish is to be informative not controversial, if thats what I want I can get that on the "Other" forum

[Sheryl]

Posts bickering over "natural cures for cancer" have been removed. Please note Health Forum rules as follows:

 

2. Quackery and Misinformation: Posters should pay particular attention to forum rule # 2) "You will not use thaivisa.com to post any material which is knowingly or can be reasonably construed as false".

This will be strictly applied with respect to presentation as fact any statements which are clearly contrary to medical science.

 

 

 

and

 

3. "Alternative" vs. Allopathic (Modern) Medicine: It is recognized that there are systems of medicine other than the allopathic and that TV members have the right to avail of these either instead of or in addition to conventional treatments. However, a distinction is made between non-allopathic systems of healing, home remedies, and outright quackery....
o Quackery, is defined as claims made for the absolute prevention or cure of disease unrelated to an established discipline (allopathic or otherwise) and unsupported by scientific evidence. These often occur in fads. Use of the forum to promote quack cures will not be tolerated.

Lastly, aggressive attempts to persuade other members to either adapt or abandon alternative vs. modern forms of treatment will not be permitted. Experience has shown that this invariably leads to arguments and flame fests that serve no useful purpose.

The "natural cancer cures" Chris Wark promotes most definitely are not supported by science and fully qualify as quackery. And, predictably, the post advocating it quickly led to bickering.

[Sheryl]

OP, while your desire to take valium before your appointment tomorrow is understandable you might do well not to as you need to be as clear headed as posisble in talking with the doctor. There is a lot you need to ask/find out. If you must take it keep the dose minimal.

 

What you need to know is what was seen on surgery in terms of any visible penetration of the cancer beyond the inside of the colon, results of lymph node biopsy if done, and results of path report of the section of intestine removed. This path report will tell the type of cancer (adenoma etc) and also how far it penetrated the wall of the colon. Together this information will determine the stage of your cancer and that in turn has implications for both prognosis and recommended next steps (i.e. chemo or not etc)

 

 

Stage 1 =  the cancer is contained within the intestine and has not penetrated through the intestinal muscle layer (intestine has, from innermost out, a layer of mucosa, submucosa , muscle and then what is called serosa, that is the shiny outside coating if intestine). In other words the cancer is either only in the mucosa and submucosa, or has infiltrated the start of the muscle layer but not gone completely through it to the serosa

 

Stage 2 - the cancer has spread through to the serosa, but no involvement of lymph nodes or other adjacent organs

 

Stage 3 - spread through the serosa and there is some involvement of immediate adjacent organs like lymph nodes.  There are subdivisions 3a, 3b etc. according to how many lymph nodes were positive.  When the path findings show Stage 3 it is usually indicated to do at least a liver scan to see if it is confined to intestine and local lymoh nodes ("localized disease) or has spread to other organs of the body. The liver is usually the first place it will spread to.

 

Stage 4 - same as stage 3 but with metastasis to further away organs.  May need additional scans to determine this, which would be done only if  the path report confirms that it is at least stage 3.

 

So what you need to know is:

 

1. How far into the wall of the intestine did the tumor penetrate?

 

2. Were any lymph nodes positive?

 

3. Did the surgeon see any obvious signs of liver or other organ involvement on visual inspection?

 

4. Taking all the above into account, what stage does he think your cancer is?

 

5. What is the histological (tissue) type of the cancer?

 

6. Recommended course of treatment? (if chemo -- what drugs? Would any of the newer targeted therapies be appropriate?).

 

7. Is  the colostomy temporary (i.e. they can reattach the colon through a second operation later) or permanent?

 

I suggest you take notes for the answers as there will be a lot to digest and think through afterwards. 

 

If it comes back Stage 1 then usually no further treatment indicated, just careful follow up.

 

If Stage 2 , sometimes no further treatment and sometimes chemo is suggested and the pros and cons are complex and you would want to read up on it/think about it if this applies to your case.

 

If Stage 3, chemo is always suggested  and makes a significant difference in survival.

 

Stage 4 is frankly  a terminal prognosis, chemo usually offered but not irrational to decide against it.

 

You are  not going to get a Stage 4 diagnosis tomorrow since the distinction between Stage 3 and 4 almost always requires additional scans, since the distinction between these stages  depends on whether there is evidence of spread to other organs. But you could be told Stage 1, Stage 2, or "Stage 3 or 4".

 

[al007]

Thank you as always  bl**dy well correct !!   as is the case 99% of the time  No Valium, of course I can do it without, No choice !! too dangerous to Ignore what Sheryl says, I joke !! but am equally serious

 

I have already been advised the colostomy is temporary, so hopefully this will not change, however as always this is Thailand

 

The last blood tests are different from those usually done maybe more liver orientated

 

To others, ignore Sheryl's advice at your peril  !! even more dangerous than no insurance, or money in lieu

 

Your summation is very excellent and teaches me a great deal, my surgeon and all his students will be seriously impressed when I ask the right questions, could not do without your help and input, Thank you

 

I also believe your summation will be very good for many people

 

Have not got this far not to concentrate

 

For me one of the secrets is doing far more and knowing far more than I would have to do in the UK with these problems, it is also more difficult with no GP in the loop

 

Even when I enquire about the state of my prostate cancer I am told that is outside their brief

 

I did however see a Urologist a month ago and he said on my prostate cancer; having reviewed the MRI come back in a year, again at Chula

 

It was me that when having the last MRI for colorectal cancer insisted the prostate also be done, although it involved two scans but done at the same time and big discount and also saved money, I needed to verify the Prostate problem was under control

 

So have to put the necessary questions onto one sheet, need to be concise so I do not get timed out

 

Only two cocktails tonights at Happy Hour

 

A very appreciative OP

 

 

[yooper]

1 hour ago, al007 said:

 

Only two cocktails tonights at Happy Hour

 

good for you... possibly quite medicinal imo. My preferred libation is cognac, most recently Hennesy Black label.  In moderation of course.

[al007]

10 minutes ago, yooper said:

good for you... possibly quite medicinal imo. My preferred libation is cognac, most recently Hennesy Black label.  In moderation of course.

Thank you

 

I am trying to some extent to be moderate, and at this stage neat cognac is a bit strong on the linings of the inside of my body

 

There will be those who will be saying at this stage I should not be drinking my business not theirs

 

At four times the Uk legal drinking age , it is my well considered choice 

 

Actually to get very drunk and pass out is also very appealing just at this moment in time

 

I have a lot to do tomorrow and I need to be on the ball

[lopburi3]

And today news - with reports that 3-5% of cancer is directly linked (including colorectal).  We can"t win.

Quote

Consuming alcoholic beverages, even in moderation, may increase your risk of developing certain cancers, according to a new statement released by the American Society of Clinical Oncology (ASCO).

http://abcnews.go.com/Health/moderate-alcohol-consumption-increase-risk-cancers-experts-warn/story?id=50996234

https://www.nytimes.com/2017/11/07/well/live/cancer-doctors-cite-risks-of-drinking-alcohol.html

[al007]

24 minutes ago, lopburi3 said:

And today news - with reports that 3-5% of cancer is directly linked (including colorectal).  We can"t win.

http://abcnews.go.com/Health/moderate-alcohol-consumption-increase-risk-cancers-experts-warn/story?id=50996234

https://www.nytimes.com/2017/11/07/well/live/cancer-doctors-cite-risks-of-drinking-alcohol.html

Your observations appreciated

 

My observations, quality of life no one priority

 

I am pretty certain my drinking has contributed to my cancer plus overweight

 

I have already lost 24 kilos and aim another 20 to get to total weight 100 kilos

 

Stopping drinking 100 % unacceptable

 

I have also modified my diet seriously

 

Everyone  to their own, I am 72 plus, my father died at 70, as did his father and grandfather

 

I think I have a reasonable chance of getting to 73,( 5 maths more ! !!) and am already on bonus years

 

I have already told my wife we are out to dinner when we get home friday night and my food intake will be modified as may my alcohol but I will drink what I want and need, note the word need

 

I am old enough to make considered judgements

 

I also propose to continue driving despite the risks

 

I also go out in the sun

 

Happiness is very important and despite maybe being quackery heals many things

 

Misery and unhappiness definitely kills, and not for me

 

Lets not forget living is guaranteed to be terminal

 

 

 

[al007]

My list for tomorrow

 

How far into the intestinal wall

 

Lymph nodes

 

Any sign of liver or other damage

 

What stage

 

What type and how aggressive

 

So whats next

 

Colostomy reversal when

 

What has been done in my ass many stitches

 

Stitches self dissolving I presume

 

Exercises to preserve anal sphincter

 

Chances of sphincter being damaged

[yooper]

35 minutes ago, al007 said:

Thank you

 

I am trying to some extent to be moderate, and at this stage neat cognac is a bit strong on the linings of the inside of my body

 

There will be those who will be saying at this stage I should not be drinking my business not theirs

 

At four times the Uk legal drinking age , it is my well considered choice 

 

Actually to get very drunk and pass out is also very appealing just at this moment in time

 

I have a lot to do tomorrow and I need to be on the ball

understood, the wonderful burn can be quite intense,  perhaps not very therapeutic  in your situation  My second choice is Tullamore Dew Irish Whiskey, which can be sacrificed over an ice cube to dilute the strength while retaining a  very good character.  

[yooper]

42 minutes ago, lopburi3 said:

And today news - with reports that 3-5% of cancer is directly linked (including colorectal).  We can"t win.

http://abcnews.go.com/Health/moderate-alcohol-consumption-increase-risk-cancers-experts-warn/story?id=50996234

https://www.nytimes.com/2017/11/07/well/live/cancer-doctors-cite-risks-of-drinking-alcohol.html

ya, smells like more cherry-picking for grant money with a little help from the fake media.  If it were possible to eliminate all other risk factors alcohol might paint a very different picture with light use.  Seems like every few months a new study is announced that reverses the findings of previous "experts".

 

[al007]

49 minutes ago, lopburi3 said:

And today news - with reports that 3-5% of cancer is directly linked (including colorectal).  We can"t win

Every day I awake, see the sun and enjoy I consider winning big time

 

I also choose to stay with the winners

 

Plus misery is optional and not on my list

[superglue]

I have stage 4 throat cancer in remission.

All teeth were extracted at the CNX University Hospital.

In addition I had many sessions of Hyperbaric Oxygen Chamber therapy.

I accept that I will never eat solids again and subsist on soy milk.

[Antonymous]

1 hour ago, al007 said:

My list for tomorrow

 

How far into the intestinal wall

 

Lymph nodes

 

Any sign of liver or other damage

 

What stage

 

What type and how aggressive

 

So whats next

 

Colostomy reversal when

 

What has been done in my ass many stitches

 

Stitches self dissolving I presume

 

Exercises to preserve anal sphincter

 

Chances of sphincter being damaged

Other questions you may consider

are:

1. Exactly what treatment do you recommend?

2. Can I get a list of all the drugs that you recommend so that I may research them first?

3. What is the 5 and 10 year disease free survival rate for this treatment?

4. How many patients at my stage have you cured and are still well 5 and 10 years later?

5. Could you give me 5 references and ask them if I may speak with them?

6. What is the best anti-cancer diet plus lifestyle changes that I should follow now?

As always, best of luck and I hope that you will find the answers that you need.

[faraday]

Mornin' Al

 

Wishing you the best today mate.