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.

(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.

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.