Wednesday, February 27, 2013

2012


Early this year in January, I was asked to go for a CT-TAP ( Computed Tomography of Thorax, Abdomen + Pelvis ) in Hospital Tuanku Jaafar Seremban
The surgeon wrote briefly on the form that I was :   60 years + / female
~ was diagnosed `c stomach ca ( T2 No ) in 2008
~ underwent subtotal gastrectomy `c D2 dissection in 2008
~ HPE : Adenocarcinoma - poorly differentiated Ca ( Signet ring )
Currently, pt. is well + asymptomatic
# : CT-TAP for surveillance.

The following month February, I got the results. It seems that there is a small swelling in my gall bladder duct which is between the duodenum and the liver. My gall bladder was already taken out as it had stones along with 18 lymph nodes around the stomach during the gastrectomy operation in 2008.
I was surprised as I do not feel any pain in my abdomen. The surgeons were very concerned and asked me to go for blood tests and MRCP - a type of MRI ( Magnetic Resonance Imaging ) scan for the tissue in the bile duct. Since the duct is dilated, the doctors are worried about the obstruction : Problem within duct ( possiblity stones or worms ), or with the wall duct or outside the duct.
So, end of May I went for the tests.

In June, all the blood tests ( CEA, FBC, RP / LFT ) results were okay and normal.
MRCP result form :-
CT-TAP --Diluted proxinel CBP
No obstructive cages seen
The surgeon then told me not to worry , as it is normal after gall-bladder removal to have bile duct narrowing called post cholecystectomy syndrome.

I was so relieved and happy. I was very fortunate to have regular check-ups in this hospital by such caring and careful doctors and surgeons especially Dr Mahadevon and Dr Azrina. They were so concerned in taking good care of me because of the young cancer-survivor and great friend ( Dr. Kelvin ) recurrence. He is undergoing another painful round of chemotherapy and radiotherapy treatment the second time. The cancer has spread to an area near his kidneys which is impossible to operate. My heart goes out to him as he is so young around thirty and suffering. Every night I say a prayer for his recovery.

In November, I went for my check-up in the hospital. I was given the all-clear healthy sign as I have passed the 5-year mark for cancer-survivor recovery.
Everyday I count my blessings and praise God. I am still cautious of my diet by eating more fruits and vegetables daily, maintaining my weight and doing exercise regularly.

Postscript :
Dr Kelvin Choo, the young and brave cancer-survivor just passed away before this Christmas. He has inspired and touched many hearts in his battle with cancer. I will keep the wonderful memories of his friendship in the stomach-cancer support group. Rest in peace, Kelvin.

Tuesday, September 14, 2010

Retrospective

September 2010

Am I still alive ? Yes ...and I am enjoying precious life....
It has been two and a half years since my surgery. How time flies ! I feel wonderful and alive ! Now I find that I can put on weight easily if I am not careful with the fats and carbohydrates but I try to maintain my weight as I like to be attractive and slim.

I told the patients that if they can put on weight, it means the body and its insides are back to normal. That's how marvellous nature is....... we as patients/ survivors without stomachs or partial stomachs can live to eat. We must be careful and remember to eat healthy + nutritious food to live. TIME is the healing factor. We must have the patience and determination to go through all the necessary treatment : surgery, chemotherapy + radiation. Positive outlook and attitude , family support and loving care plus strong will to overcome this cancer are important.

New patients are often worried to undergo surgery because they think that without stomach or having a quarter stomach left after operation, can they eat ? Can they live ? If so , for how many more years ? Having stomach cancer is like a death sentence to them. I advise them to read as much as they can about this illness through the internet via Google search and my blog. The more they know and understand it, the less fearful they will be. I will visit them during their stay in the hospital and help them to go through the surgery. If there are no complications or infections, most of the patients spend only 5 days in the hospital. Sometimes I bring one or two friends ( stomach cancer survivors) as living testimony to the new patients to give them hope and encouragement.

Usually chemo and radiation treatment takes about one and ahalf to two years to finish. I notice that patients, with loving family members' support or caregivers diligently bringing them for treatment, constant loving care and cooking nutritious soups etc, recover better in their treatment apart from the patients themselves having their own positive mental attitudes. During the chemo and radiation treatment, the patients' tongues become " senseless " .....everything tastes bland. Some patients take herbs, some like chilled drinks or even coconut juice, mostly take soups and soft food; BUT every individual patient's body is different. What one patient likes to eat may not suit to another patient's body. So it's up to the patient to discover what food really suit his body during the treatment.

Our support group has helped about 48 patients so far . A few has passed away.....because of their advanced conditions ; such as the Mersing man : His two children are being taken care of by his nephew in Muar. Some are still undergoing treatment at the Day Care Ward in hospital. If a patient misses his appointment for chemo treatment, Ms Goh will contact and help him or her. Others are well. I do meet them occasionally when they come for their follow-up appointment with Dr Ramesh. The older patients aged around 70 impressed me with their stoic cheerful disposition than the younger ones who worry more.

I have been very busy......taking care of my 2 grandchildren and family members, doing the daily routine of cooking, marketing, household chores etc. My hubby and I looked up old friends and enjoyed social activities with them - like going out for dinners together, movies, outings and travelling to places in our beautiful country and neighbouring countries. I learnt to be more appreciative and more grateful of little things, like seeing the stunning colourful view of a sunset in the sky at the beach, love the beauty of flowers blooming in Berastagi (near Medan) and Cameron Highlands etc. etc. My hubby and I had been to many places.... thanks to cheap travelling by Air Asia, LRT, KTM and GPS . We often make short attainable goals in our planning.

At present, I am not taking any medication for my body except some calcium supplement to prevent oesteoporasis. Every three months I take a jab (Neurobion : Vit B1, B6 + B12 ) from my family physician. Patients without stomachs (total/partial gastrectomy) have to take Vit B12 injections annually or every six months so that their iron + folate acid can be absorbed well into their bodies.

I do walking exercise + play golf twice a week, practise my qiqong, take my daily fruits and vege juice drink, eat everything moderately and most importantly try not to worry too much and think too much. As my hubby and family say, relax, count my blessings and give thanks to God, BE HAPPY and enjoy life. After all, life is too short. I have a quarter left from my lifetime. If I can help to do volunteer work, help the surgeon by seeing the new patients go through surgery well and I feel good about it, no stress, no worry, then I hope to become a better person for people and friends to get along with.

.

Tuesday, May 26, 2009

Stomach-cancer has NO Respect

This week in May2009, my first patient from Port Dickson, who refused surgery 3 times last year and insisted on alternative treatment despite my persistant counselling, contacted me and told me that she is in Hospital Tuanku Jaafar Seremban (HTJS). She can't eat, has diarrhoea and blood in her urine.

Through an endoscopy, Dr Ramesh the G.I. surgeon, found that her stomach had swollen as the tumour had grown bigger and he couldn't operate. He then tried to insert a stent (cost RM2,800) into her oesophagus but it was blocked. The patient told me that it was so painful that she screamed out loudly. Next, Dr Ramesh did a duodenotomy by opening a hole into her small intestines and inserted a tube for external feeding - that is only for fluids like water, milk and blended food to be poured into the tube.

Now she is so thin and frail + gaunt-looking. It is very sad to see her like this and she regretted that it was too late for any hope of surgery to be done to save her. She had spent thousands of ringgit in buying health products from her direct-selling friends, went for countless healing sessions and even bought an infra-red bed to sleep on. It was her choice and it was a futile wish now to turn back the clock. It was very difficult for me to comfort her and offer her solace. We can both pray together and we hope that she can advise all her family members and friends with stomach-cancer to go for surgery as soon as possible. It is vital and urgent to cut out the cancerous part of the stomach immediately, as the cancer cells are very aggressive and can spread fast to the other organs if surgery is delayed.

Still Dr Ramesh is trying his best. Tomorrow (27/5/09) the patient will undergo a cystoscopy to check her gall-bladder + urinary bladder as she still bleeds in her urine.
We can only pray and hope for the best. One of our support group member will try to help the patient get SOSCO + MAKNA bursary aid . Dr Ramesh will also arrange for her to get palliative care and chemotherapy.


Last month, April 2009, Ms Goh and I saw the patient from Mersing in HTJ S.eremban. He had problem in swallowing and could not eat much. Dr Ramesh did an endoscopy examination and successfully widen his stent inside his oesophagus. We were afraid that the stent has "collapsed" as it had been 6 months old. Now we were relieved when Dr Ramesh said that the stent could last another 3 or 4 months. Ms Goh tried to get help from MAKNA in supplying him some high protein Ensure milk for his nutrition. This June school-holidays, the Mersing patient will take his 2 children to meet his nephew and family in Muar, Johor, so that if anything should happen to him at least his 2 children will be cared for in future. He always has a cheerful disposition and he has a lovely smile when he shakes his head and said " Boh pien" ('No choice' in Hokkien dialect ) as he accepted his condition meekly.

The young doctor who had total gastrectomy last year, completed successfully all his chemo + radiation treatment last month. Now, he is helping to guide 2 new patients in their journey of chemo + radiotherapy treatment and advise through email another patient in Penang about post chemo-treatment. It is wonderful and big-hearted of him to help others.


It has been a year and 3 months since my operation last year. Time flies past and I am lucky to be given a clean bill of health. I had a CT Scan done recently and there is no recurrence - everything is normal. I thanked God daily and appreciate life more ! Comparing my illness with the other patients, I was very fortunate to have partial gastrectomy at 1st stage with none of my lymph nodes infected. Thus, I have no need to go for chemo and radiotherapy. I am very very lucky.

This is why it is so important to create awareness of this stomach-cancer. Any pain or uncomfortable ache in the abdomen that does not go away after medication but keeps coming on and off, it is best to seek an endoscopy and send the stomach tissues for biopsy. If it's cancerous cells, surgery is the immediate option. The earlier the better.

I noticed from the patients'symptoms that if they suffer the abdomen pain or discomfort for less than 6 months, the stomach cancer is usually at 1st stage. But if the pain lasts for a year, most of the patients are 2nd to 3rd stage. This is how fast the cancer cells spread. So time is the essence! There are a few patients who had these pains for more than a year; because of work commitments and responsibilities they finally see a doctor when the pain becomes unbearable. By then the cancer cells had spread to the intestines and surrounding areas around the stomach, got ascites (fluid retention) or the tumour has grown swollen in the stomach and spread upwards into the oesophagus...........
Sometimes, it is inoperable or the patient has to go through radiotherapy or chemotherapy to shrink the tumour first before surgery and mostly it is total gastrectomy, that is whole stomach cut out followed by intensive chemo + radiotherapy course.

Stomach cancer has no respect for anyone; whether one is rich or poor, educated or not, old or young....... if it happens, it happened. Some of my patients ask why ? how?
All I can say is that it happened and is there and it must be taken out....surgery first. Life is more important - LIVE for your loved ones before it is too late !

We have patients from all walks of life :- business tycoon, diplomat, architect, doctor, professional retirees, supervisor, tractor/van drivers, factory operator, child-minder, housewives etc.......and as young as 20 year-old-plus to as old as an 82 year old man.
Most of them were refered to Dr Ramesh through their doctors, family members or friends, some through the media - newspapers / google search. As Dr Ramesh 's fame become known as one of the top GI surgeons in Malaysia, so do the number of patients increase. Although stomach cancer is not as well-known and popular as breast or colon cancer, we hope to create more awareness.

Usually, Dr Ramesh the surgeon, will let me know when a new patient is to be operated. Doctor will give the patient my phone number and he/she will phone me or I will call the patient and ask him or her to visit me. I will then give the patient some notes on stomach-cancer plus notes on what to do during and after his hospital stay that is before and after his surgery. I will visit the patient during his stay at the hospital until his discharge.
Next, I will follow up by phone counselling on his diet and convalescing at home.

If the patient needs to go through chemotherapy and radiotherapy, I will inform other members cancer-survivors who had underwent this treatment to guide and advise the new patient. It is very important to see the patient go through the surgery and recover it well. Encouragement and positive mental outlook are essential.

Fortunately, mostly or nearly all the patients referred by the surgeon to me so far went through the surgery successfully and recovered except for one or 2 who were too advanced in their stages of cancer to do anything. The surgeon normally arranged them to go for palliative chemo treatment.


The main purpose of our group support is to create awareness and hope for the patients and their caregivers.


The most important message for those diagnosed with stomach-cancer is :

1. Do NOT wait and waste time. Get surgery done immediately.
Remember the cancer cells are aggressive + spread fast.

2. Don't be treated by non-medical personnels but rely on qualified medical professionals.

3. BELIEVE in your doctor + surgeon as they are professional and experienced in their fields. Trust them.

4. Early treatment is crucial and important.

.

Monday, February 16, 2009

Patients

I felt very sad and helpless when some of our patients and their loved ones faced the side-effects of their chemotherapy and radiation course. While undergoing chemo + radiation treatment, the patients experience terrible depression, have extreme mood swings, are often bad-tempered and angry, become 'crazy' and forgetful, erratic feelings and behavior that seems abnormal to their loved ones and caregivers.

It is at these times that our group members counsel their loved ones to have lots of patience and tolerance and sometimes to walk away to avoid arguments and quarrels or to leave the patients alone for a while.

This will go on not for a few days or a few weeks but months and months of the chemo +radiation treatment course. Just when the patients feel well, sane and recovered, the cycle of these terrible roller-coaster feelings will start again with the next treatment.

Usually there are 2 sets or phases of 30 times chemo+radiation treatment (total 60 times)
One set or phase of 30 times means 6 months x 5 times treatment . e.g. In every month there is a full cycle of 5 days non-stop chemo+radiation therapy treatment course followed by a rest of 21 days ( 3 weeks). Then in the next month, the cycle starts all over again.

If I phone the patients during their treatment days, I could sense their anger and frustrations in their talk. Some even cut short abruptly or hang up their calls. It is at these moments that I worried and prayed for them and their loved ones + caregivers. But during their rest days of in-between periods of treatment, the patients sound normal + their usual self.

There is one patient (43 years old) from Kajang. He went for 3 times chemotherapy in KL before his operation. This is to shrink the size of the tumour. His wife told me that during those 3 days of chemo, his temper was awful. She just walked away to the garden.
Now he is recovering well in HTJS (Hospital Tuanku Jafaar Seremban). He had partial of his stomach (60%) + oesophagus cut off and the remaining part of his stomach ( about 1/3 left ) + oesophagus joined together and placed up into his chest cavity ( Ivor Lewis Oesophagogastrectomy operation) .

I admired his strong fortitude and positive mental outlook. On every visit he had a cheerful smile. Once he told Iris, my daughter, that he is blessed and lucky to have Dr Ramesh and survived the operation when compare to the fate of those victims trapped in the China earthquake incident.

He even helped to give encouragement to a new patient ( an 80 year old man from Kuala Pilah)
I brought this old gentleman (before his operation) to this Kajang man as they were in the same ward in HTJS, for him to learn how to use the spirometer ( a gadget with 3 balls to suck up and exercise the lungs after the operation)

Today, this old man is recovering well from his subtotal gastrectomy operation ( Bilroth 2 with 70% of his stomach cut off and remainder 1/4 stomach joined to the intestines ) + his bed is opposite the Kajang man. It is good and nice to see these 2 gentlemen recovering well and I thanked God and ask Him to Bless them always.

Some people asked me why should an 80-year-old man had to undergo a major operation. I believed and trust my surgeon, Dr Ramesh. He has his reasons and I know that he is a very careful surgeon. He will make sure that his patient is fit enough to be operated on and usually warded the patient a few days earlier in HTJS to go through some necessary tests. When everything is well, then the patient will be operated. Life is precious and worth saving ! If a patient can't eat well and is in pain all the time, how can he live without eating + drinking ?


Last month Ms Goh and I met the Mersing patient from Johor in HTJS. He is the patient with the sponsored stent in his oesophagus. He looked well and cheerful and was happy to see us. He told us he could eat well. We asked him about his children's welfare and his eyes shone when he narrated about their mischievousness and children's play. Ms Goh has an anonymous benefactor from KL who is ready to take care of the children's welfare and needs when the time comes. He understood and will look into it. He has some relatives but they stay far away in Muar and has lost contact...not really close with them. His ex-employer's family is now looking after them, sending the children to school in the mornings and cooking meals for them. At least now, the Mersing patient has some MAKNA Bursary assistance ....monthly income of RM200 for a year. Ms Goh's friend from KL also gave him a big "ang-pow" to celebrate the Chinese New Year (CNY) festival with his children. There are many 'guardian angels' still around. God is great !


The young doctor and architect are now tolerating their second phase of chemo + radiation treatment. Other stomach-cancer survivors are doing well. Positive attitude, hope and good nutrition are important to beat this cancer.

When I started to help the surgeon Dr Ramesh in March last year (2008), my first patient who refused to be operated and was given a few months to live, is still alive . During my recent phone call on CNY this year, she sounded strong and cheerful and could eat well. I was very happy to hear her but she still refused to meet me. I prayed that one day we will meet.

A few patients passed away. When their cancer cells has spread to other parts of the body, when they have problem eating and keep losing weight, when they lose hope and are unhappy.......
My surgeon tried his best to save them, but when the spread is too advanced , only palliative care and pain-killer drugs or radiation are given.Through the Hospice and Unit Palliative, we try to give as much comfort and care to the patients and their caregivers. Faith and prayers can give them hope or acceptance/ deliverance from their pain.

We always try to advise patients not to give up hope, think positive, eat well and maintain their weight especially after surgery. Do light stretching exercises, go for walks, make short attainable goals, contact friends and family, get new hobbies to avoid boredom and enjoy living.

We as stomach-cancer survivors can "train" whatever remaining portion of our stomachs or intestines (those who had total gastrectomy Roux-en-Y operation= that is whole stomach cut off) to expand in time. At first we eat little amounts but often as many as 6 to 7 times a day. Others may remark that we are greedy as we eat non-stop but in time we can put on weight like some members in our support group. Only we must eat wisely and healthily, more protein food and fresh fruits + vegetables and drink high-protein milk.

Monday, November 17, 2008

concern

While browsing through the visitors in the "Live Traffic Feed-jit : Watch-in-Real-Time "column in my blog, I was surprised to learn that there are so many people anxious and worried about stomach cancer : some are survivors, some are patients, some looking for information and others with many enquiries and they all come from all over USA, UK and ASEAN countries.
I can understand how it feels when you or someone you love is afflicted with this stomach-cancer and how desperate and fearful it is to gather as much knowledge as one can about this illness. I told my surgeon Dr Ramesh about this and he is willing to answer the queries if the visitors will write in as comments into my blog and give their email address. I will do my best to forward all the queries to him to answer. This week (24 Nov - 26 N0v ) Dr Ramesh is attending a world conference on stomach-cancer in Hong Kong.

The patient from Mersing ( with the stent in his oesophagus ) is eating well and sounds cheerful. His next check-up with the surgeon is in January. The young doctor patient in KL has completed the 1st phase/round of chemo and radiation treatment. He is fine and promised to keep a record especially on his diet and nutrition which he will contribute to our stomach-cancer support group. Hopefully our future patients will have a guide and reference on what to eat and do while undergoing chemo and radiotherapy.

In August, after 6 or 7 months I have recovered; my family members and I went for blood tests through our family doctor at the Pathlab in Seremban. Thankfully everything is normal for me and my Helicobacter pylori is negative. BUT my husband and daughter were tested positive for H.pylori bacteria . My husband's reading is 60.9 +ve and my daughter's 113.0 +ve. We were shocked as both of them did not experience any stomach discomfort or pain. My son-in-law who is also living with us was tested negative. Quickly both my husband and daughter went to see my surgeon Dr Ramesh who prescribed 2 types of antibiotics and romesec omeprazole, a proton-pump inhibitor for them to take for a week or two. A month later, they went to the Pathlab and took a breathing urea blow test and were tested negative. Even my two young grandchildren ( 2+ years old and 6 years old) were tested and found to be negative. We all sighed in relief and thanked God.

Nowadays, we are careful in what we eat; we try to eat more vegetables, soups and steamed food. We all drink fruits and vegetables juices early in the morning three times a week, take our vitamins and supplements daily and do exercises according to our level of abilities. Sometimes we do go out to eat our dinner in the restaurants. We try not to be too paranoid and become health-fanatics but we eat and do things moderately, normally and use common-sense. We have many friends who recommend us (especially me ) to eat this and that food, seeds or plant-leaves in order to prevent recurrence of cancer and be healthy. Everyone of us has some cancer-cells in our bodies but we must make sure that our immune systems are strong enough to destroy them. So we must eat well, rest well and "listen" to our bodies by choosing our food wisely.

Sunday, October 19, 2008

Sponsor

This month, during the 3rd day of Hari Raya, Dr Ramesh called me to see a patient (aged 60) who came from Mersing in Johor. He had advanced carcinoma (cancer) of the oesophagus and he could not eat. So Dr Ramesh dilated his oesophagus so that he could eat a little. He was being discharged from Hospital Tuanku Jafaar Seremban (HTJS).

What touched the Doctor's heart is that he has two young children ( aged 8 years and 10 years ) now living on charity with his ex-employer's family as the patient's wife passed away 8 years ago of cancer. Dr R requested me and Ms Goh to see whether we could do anything to help the patient for the children's sake.

My husband and I managed to see the patient as he had missed the last bus to Malacca. Being the festival season, all the buses were full of passengers returning home or to work. He had booked a ticket for the earliest bus the next morning and got himself into a small budget hotel in town.

That evening over a cup of Horlicks, I saw how thin he is. He had great difficulty in swallowing even his own saliva. Every now and then, he got up to spit out his saliva. We were amazed to know that he traveled from Mersing to Kluang to Malacca and then to Seremban HTJ by bus or taxi. Each trip cost him about RM 100 one-way and his ex-employer is so kind to give him RM200 - RM300 for his expenses every time. Last year he stayed at HTJS for two months to complete his chemo and radiation therapy in Nilai. I gave him Ensure milk and asked him to drink often before he comes to see Dr Ramesh on 13 October.

The next day my husband found out that it took the patient a whole day to reach home late at night ( 8.30 pm). Meanwhile I contacted Ms Goh and she told me to get him have his identity card, his children's birth certificates and his bank book front page's details photostated and bring all these copies along. This is to facilitate the procedures of asking aid from the Welfare Department and if it is approved , the financial aid can be banked in straight into his bank account.

On Monday (13-10-08) Ms Goh and I met the patient at HTJS. He had travelled the whole night to reach HTJS for his morning appointment. Ms Goh got the necessary forms from the relevant departments for the patient and the Doctor to fill them up in order to get aid from the Welfare and MAKNA (National Cancer Council)

In Dr Ramesh's clinic at SOPD, we were told that the patient needs to buy either a RM2700 or RM3500 "stent" to insert into his oesophagus so that he can EAT TO LIVE. We were stunned and shocked! This was the first time that I heard a patient needs to cough up money as I thought the HTJS will supply the necessary things or medicine for free especially for poor patients. Unfortunately Dr R told us that the "stent" must be bought from a supplier in KL as the HTJS does not have this "stent". We need to find a sponsor/sponsors fast. It was so short a notice to find any. How long will this "stent" help him to live ? we asked. Doc said, "about 6 months". Ms Goh suggested to ask help from MAKNA but with the procedure and paperwork, the money will come in two months time. "Too late", the doctor said. Then Dr R wanted the patient to go home and come back again later. My mind was racing. Now it's Monday. How can we let this poor man travel a whole day back to Mersing and then to come back later again ? He is suffering and time is so precious for him. I asked doctor how soon can he do the insertion of the "stent" if we have the money ? "Tomorrow" the doctor answered. So I told Dr R to get the patient admitted to day as I offered to advance the money. Immediately Dr gave a call to the company in KL to have the supplier bring in the "stent" tomorrow. I only need to bring in the cheque at 3 pm the next day.

Dr Ramesh was very touched by my offering that he said he would gladly contribute some money for the purchase too. It was very big-hearted and generous of him but Ms Goh and I told him that he has done enough in trying to save patients. Ms Goh also said she will call up her friends to help out. She even said that she will give her money when her fixed deposit matures at the end of this year. Bless her heart ! I told her it's not necessary as I think my family can afford it. My children can help to contribute the sum. We were all thinking about the two children's future without their pa eventually.

The patient could guess that something was importantly discussed as he could not understand English. Ms Goh only explained to the patient that he needs to warded so that something will be inserted inside his gullet for him to eat food later.

Then we brought him to the hospital Welfare Department for an 'interview' and to fill up the forms. The lady officer said she will try her best and that the most he can have is a monthly allowance of RM300 for about 6 months or one year. "Good enough" we said and thinking how soon and fast will the money arrive ? We left with hopeful thoughts that at least this patient may get some money into his account. Still at this time, the patient doesn't know his critical condition. We saw him safely warded in HTJS in Ward 3 A.

The next day (Tuesday) at around 3 pm, my husband and I went to the X-Ray department at HTJS. We saw the patient lying on a bed wheeled outside the X-Ray room. He looked okay and calm. Then Dr Ramesh came out and saw us. He said that the supplier is on his way. While waiting, Dr R came out again and handed me a roll of money bills into my hand. I was surprised and quickly my husband and I politely declined his donation. I told Dr that Ms Goh has really found a sponsor ( a patroness from KL) who is happy to donate to a charitable and worthwhile cause.

God really moves in mysterious ways. There are so many good angels around and I thank God and ask HIM to bless Dr Ramesh, bless Ms Goh and the kind sponsor for helping unselfishly and unconditionally by coming to the "rescue" of this patient.

The supplier explained to us that the "stent" will take some time to expand fully in the oesophagus usually after being warmed up by the patient's own body temperature.
With this RM2700 stent, the patient can eat and drink hopefully well but he must take medicine daily to prevent the reflux and bile from coming up.
The other more expensive RM3500 stent has no need of medication.

On Wednesday, the patient was X-Rayed to make sure that the "stent" was properly inserted and functioning well.
On Thursday morning before his discharge, my husband and I saw him again. I told him to drink Ensure milk (given by Ms Goh) often and to keep us in touch. His next appointment with Dr Ramesh is due next month. We ask him to give us a call when he arrives.

Wednesday, August 20, 2008

Stomach Cancer Support Group

I realize that each individual has different symptoms of stomach-cancer.

About 2 months after my surgery, Dr Ramesh (a caring Upper GI consultant surgeon) referred two patients to me for moral support and encouragement to undergo surgery and treatment.

The first patient from Port Dickson lost a lot of weight (13 kg) and couldn't eat well. She was diagnosed as 1st stage in the beginning of November last year (2007) but she had been postponing her surgery dates three times. So when she came to see Dr Ramesh the fourth time and still hesitated to go for surgery, Dr Ramesh as a last resort asked her to see me as the best living example. By this time (in March when she saw me) her condition was in the third stage. I told her that time is precious and she got herself admitted into Hospital Tuanku Jaafar Seremban ( HTJS) The good doctor ran some tests and delayed her surgery because of hormone complications.Instead of getting herself treated for this, she discharged herself and went for alternative treatment. I was very disappointed and sad that I "lost" her. Until now, Dr R and I are still wondering and worried about her. I contacted her a number of times and she told me that she is taking medication from direct-selling friends, saw a faith-healer and practising a type of qi-gong cosmic energy healing ( reiki ? ). Recently she had a blood test and told me her liver reading is unusual. I advised her to see Dr R for a thorough examination. I can only pray and hope for her well-being.

The second patient (aged 50 plus) had no pain but had persistent vomitting. She went through the surgery (partial gastrectomy : 3/4 parts or half stomach taken out with surrounding lymph nodes) and recovered very well in HTJS. She made better progress than I did. I felt good seeing her recovered so well.

Compared to these two patients, my symptoms were different. I had gnawing pain in my abdomen that comes and goes for a few months. When I ate something, it's okay for a while; and then the dull pain starts again even at night. But I was lucky to be diagnosed as 1st stage, got a 1/4 stomach left , no lymph nodes infected and did not have to undergo any chemotherapy or radiation treatment.

After these two patients, Dr Ramesh refer other new patients to me. My daughter, Iris, and I help him to start a support group for stomach-cancer patients. We hope our group can contribute and help the patients to be hopeful and knowledgeable about pre-operation procedures and post-operation stay in the hospital to getting fully well again at home.
We recruited some cancer survivors as volunteers, health personnel from HTJS and National Cancer Council (MAKNA) to give us guidance, counseling and help to the patients.

In our small group of volunteers, we have :

~ Ms Goh, an experienced and dedicated member of MAKNA + an NGO Hospice in Seremban. She has survived and overcame 2 cancers of the womb and colon and underwent radiotherapy and chemotherapy. She is so knowledgeable about medical terms, paperwork and filling in forms for welfare aid and liaise with different departments and even follow the hospice nurse on her rounds of giving quality care to palliative and sometimes terminal patients . She has dedicated her life to servicing and helping cancer patients. We are very fortunate to have her in our stomach-cancer support group and I am learning from her.

~ Mr Kelvin, a one-and-a-half-year-old stomach-cancer survivor (aged 30+) who has completed his radiation and chemotherapy in Nilai hospital. He is an asset to our team as he helps to share his experiences and advises patients on diet and nutrition while undergoing chemo and radiation therapy. He is still working and travels daily to Shah Alam and KL from Seremban. If there are patients in KL he visits them.

~ Mr Foo, a veteran survivor ( aged 68 ) who has no stomach for 7 years. Many of the patients in HTJS are impressed and cheered by his visits as he is so full of life, jovial and has a round tummy. He is the best living testimony. He plays golf daily and his favourite motto is " Listen to your Body" and "Eat everything that is nutritious and healthy" "Must put on weight and no taboos or pantangs on what is right or wrong food". Patients must eat in order to get back as quickly as possible to normal daily life.

~ Mr Shan , a retiree whose wife passed away of stomach-cancer a few years ago. He is very helpful in communicating and counseling patients; and even translating our advice to the Indian patients so that they can get better. He finds great joy in helping the patients.

~ Iris, my daughter and my husband, Ivan, help me to advise the patients through phone calls on their diet and well-being when the patients speak in Cantonese or Mandarin. I can only speak in Hokkien and English well. Sometimes we visit the patients in HTJS for post-op care.

We started our first group meeting on 17-5-2008 with the good Dr Ramesh and MAKNA manager ( Mr Vemanna) and chemo ward staff nurse giving us some guidelines and advice on counselling. The HTJ social welfare officer was unavailable.

On an average, Dr Ramesh refer to us about 2 to 3 new patients in a month. We monitor these new patients and other old cancer-survivors' progress through phone calls, hospital and house visits. Most of these patients lost weight irregardless of whether they had stomach-cancer stage 1 or stage 4.

Example Patient A :
A female patient from Mantin ( aged 54 ) had partial gastrectomy last year (12-1-07) She lost weight from 65 kg to 44 kg. Her endoscopy was clear and okay, but Dr R is worried about her weight loss and refer her to me for advice on her diet and nutrition. She is too scared to eat certain foods because of taboo : like egg is " toxic" . I told her to eat more proteins and carbohydrates.

Example Patient B :
Another patient from Port Dickson (aged 38 ) had her stomach cancer cells spread to her ovaries and uterus which were taken out without realizing that stomach CA was the main cause. By the time she came to see Dr Ramesh, her stomach-cancer was in the 4th stage. She had Total Gastrectomy ( whole stomach taken out) and completed her radiation and chemotherapy 1+ 1/2 years ago. She was referred to me in July this year because of her acute weight loss from 90 kg to 50 kg. I told her to eat small meals often every 2 hours and drink Ensure / Enercal Plus in between meals and eat whatever she likes.
Sadly, she passed away early this month on 11 October.


Stomach-cancer has NO Respect for AGE or GENDER or PROFESSION. Anyone can get it at anytime. How or Why ? We don't know. Only that if anyone has gastric pain, abdomen pain, heartburns or indigestion that does NOT go away after being treated by GPs, please go for an endoscopy examination and blood test. If there are helicobactor pylori germs in the stomach, it can be treated with strong doses of 2 types of antibiotics and proton pump inhibitor drugs ( eg Romesec omeprazole or pantoprazole ) Please see your doctor as soon as possible for treatment.

AGE
(i) We have 3 patients with stomach-cancer in their 20s (twenties) :

~ A young mother aged 23 with a child had stomach CA stage 4 - very advanced stage as her legs were swollen. She came to see Dr R in June and Dr R couldn't do anything for her except refer her to Palliative Care Unit in HTJS. She passed away on 14 August.

~ A newly-wed woman aged 28 married a year ago and has no child yet. She had total gastrectomy ( stage 2) , completed her chemotherapy treatment and is now having poor appetite and weight loss. We are still giving her moral support and monitoring her condition.

~ A young doctor 28 years old from KL, still single and completing his internship in a Hospital in Negeri Sembilan. On 8-8-08 ( an auspicious chinese date) he had total gastrectomy (stage 2) as the CA cells were at the upper part of his stomach and spreading a little bit to his lower oesophagus. Because of this, he has to endure a drastic chemo and radiotherapy course in Nilai hospital. [Unlike me, my CA cells were at the lower part of my stomach. So the surgeon saved the upper 1/4 part of my stomach. I was very fortunate and I thank God daily for this ]
The first set consists of 5 weeks 5 days non-stop course of chemo and radiotherapy treatment ( 25 times) At present, he is now enduring the 4th week. After this , the second set will be 6 months : one month once 5 days of chemotherapy ( 30 times).

(ii) We have 2 patients in their 70s (seventies) and one patient at 83 years old

~ A lady aged 70 had partial gastrectomy done by Dr Ramesh. She is doing well in Penang and putting on weight after heeding advice on diet and nutrition and getting loving care from her daughter's family.

~ Another lady 73 years old from Port Dickson had partial gastrectomy surgery in July. She stayed the longest in HTJS for her post-op recovery. Since she is diabetic, her wounds took a long time to heal. Later she was admitted into Port Dickson hospital for her fainting spells. She was treated and given medication for her diabetes. On 15-9-08 she came for check-up and is doing fine. Her daughter said that she could eat well. Slowly she is recovering.

~ A lady aged 83 from Batu Pahat Johor , had 1/2 stomach left after her surgery was done in May at HTJS. She has high BP and thyroid complication. Her daughter lives in Seremban 2 and is worried about her poor appetite.

(iii) Most of the other patients are between the ages of 40+ and 60+.
They come from different districts like Pedas, Sepang and even as far away as from Ipoh Perak and Mersing in Johor.


GENDER
We do have a few male patients even though the number of female patients are more.

~ A male patient businessman aged 40 had partial gastrectomy ( stage 2 ) last year. He has completed his radiation and chemotherapy only 10 times out of 30 times ( 6 months - one month 5 x ).
He is working with his brother's business in KL and travelling daily. Mr Kelvin and Ms Goh helped to counsel him to finish his treatment. We were happy and relieved when he came for his last chemo on 16-9-08.
[ In HTJS there is a Day Care Room in Ward 3B where the cancer patients can come and be administered their chemo injections for a few hours. ]

~ Another patient aged 47, an architect with a successful firm in KL, had partial gastrectomy (stage 1 ) on 12-9-08. Unfortunately his biopsy results showed that one of his lymph nodes is infected. So he will be undergoing 30 x chemotherapy treatment in Nilai for 6 months ( 1 month 5 x)


Sometimes, the family members have difficulty in convincing the patient to go for surgery. So Dr Ramesh will refer him/her to us. We will then do our best to encourage the patient to go to hospital and pay them visits to give moral support and help.
Often, I will bring Mr Foo, Ms Goh and other cancer-survivor friends especially those without stomachs as living testimony to the patients in HTJS before and after their surgery stay in hospital.

We felt good when the patients become cheerful and hopeful to know that they can become like us and some even offer to join our support group after they are well.