Sunday, March 16, 2008

Convalescencing At Home

First Week at Home ( 12-2-08 ) ( Tues )

Today my family brought me, a 56+ year old woman, home. It's good to be home. My family has taken the trouble to make the downstair's room comfortable for me. My son-in-law has taken my 2 grandchildren to his mum in Pahang. Eventhough I missed them greatly, I understood the reason. My family and close relatives have shown tremendous love and support in caring for me. My sister-in-law would cook the food for me and the family. I just have to rest and get well.

A million thanks to the doctors, nurses and support staff in the hospital for their dedicated attention and care towards me and my daughter. They were very friendly and hardworking. The doctors often asked me about my well-being, encouraged me to keep practising breathing up the balls and motivated me to sit, move and walk. Their bedside manners were so wonderful that they managed to 'get rid of' me in a week's time. I can't thank them enough for getting me back to my home so quickly.

Friends and relatives popped by to see and offer their help. They even brought along some friends who were survivors of stomach cancer. Their ordeal was worst than mine and yet they are now full of life and vitality. One has survived 9 years ago, another 7 years ago (both of them without stomachs : total gastrectomy ) - I admired their courage and was inspired by their spirit and zest for life. Friends are like valuable treasures - they rally around to give help unconditionally and boost up my morale with their laughter, jokes and sensible advice.

For the first few days, I rested a lot. I needed help in getting up and lying down on the bed. I placed a fat pillow to support my back whenever I sat on the sofa. I needed someone to sponge me and wash my hair while I sat on the toilet seat.

Daily my family members gave me physiotherapy, that is "beating" with cupped hands on my shoulders, chest, back especially my middle and lower back which ached a lot.

I took some fish porridge for lunch and dinner (about 1/5 rice bowl amount) In between I drank Enercal Plus (about 50 to 75 ml) I weighed 47 kg (original weight before operation was 50 kg)

My bowel movement for the first few days was sticky guey greenish grey, just like a newborn baby. Starting from Thursday (14/2/08) I took my fresh raw juice concoction. Usually they were an apple, 2 stalks of celery and a carrot. So throughout the week my bowel movement was twice daily.

By the end of the week I could climb up the stairs to my bedroom, just in time to welcome back my grandchildren home. Soon it would be the usual routine of looking after them. The surgeons must have done a good job inside my abdomen for me to recover fast.


Second Week ( 19-2-08) (Tues)

Today I saw that my stool was formed : first part black and then full normal brown yellowish stool. I was happy as it showed that my insides are getting back to normal. My without-stomach cancer friend told me that his stools could never be formed, forever loose and in pieces. Compared to him I felt blessed and grateful to God.
From today onwards my bowel discharge is normal and back to my daily morning habit.

I could sit up from bed easily but I still cannot cough, sneeze or yawn fully - just a little cough will get my insides painful and tensed. A 1/4 laugh also felt so painful. I could eat some "meehoon kuey" soup, scrambled egg and papaya at different times of the day. I tried to eat some solid food every two hours - only a small amount about 50 - 75 ml. In between I drank fluids, clear chicken soup and even some boiled chinese herbs to strengthen my immune system ( 3 pieces puk kee + tong sum, a small handful of kei chi(wolfberry) and red dates boiled overnight in a slow-cooker)

On Friday I got a shock when I found out that I weighed 46 kg - 1 kg less in a week. So I tried to eat more as I was worried. I ate too quickly and I found my abdomen feeling very uncomfortable. Too late I realised that my stomach was too small to take in a lot. I couldn't sit down, so I kept walking up and down the house for more than half an hour. It was a terrible painful feeling.

I remembered the other day when I forgot to eat something after 2/3 hours, my tummy got upset like got wind inside. I experienced the same uncomfortable feeling. I tried to walk about until I burped or belched out air many times. I even drank one tablespoon of Gaviscon liquid.

After these two incidences, I am more careful to eat slowly, in small amount and at regular times after every 2 hours.


Third Week ( 26-2-08 ) (Tues)

I felt much better. I discovered that I can fold both legs and sit cross-legged comfortably. On the bed I could roll from side to side - my right side felt better than the left. There were two lumps one in my left chest ribs and the other inside my left abdomen which felt painful if I lie on my left side.

I took a full bath as I could now bend comfortably and use soap to sponge my skin.

I noticed that there was a white patch with painful muscle underneath on my right upper inner thigh. This lump felt painful and hard. I applied Counterpain cream and massaged it everyday. Slowly, that spot of "lazy sleeping muscle" woke up and got well before I could tell it to my doctor during my next appointment with him.

Every two hours, I would eat some solid food with liquid in between hourly.The amount is very little like 1/2 of a slice of bread and 50 ml - 100 ml liquid. Roughly, my daily routine would be as follows :

  • 7:30am 1/3 bowl of porridge oats
  • 9:00am Fresh juice of raw vegetables or fruits
  • 10:30am Protein snack/Steam Egg/Boiled Egg with toast/Scrambled Egg with Bread
  • 12:30pm Chicken/Fish Porridge or Chicken Rice
  • 1:30pm Protein Drink/Yogurt(Yakult)/Herbal Drink
  • 2:30pm Snack/Cheese and Bread
  • 3:30pm Soya Drink/Yogurt Drink
  • 5:00pm Steam Fish with Tofu,Brocolli/Carrot/Green Vegetables
  • 6:00pm Chicken Soup/Red bean porridge/Sweet Potato Soup
  • 8:00pm Biscuit/Snack
  • 9:30pm Protein Drink(Enercal Plus Milk)

Every morning I took a morning walk around my neighbourhood. When I was in the mood I did some light stretching exercises to tone up my muscles as I found that my skins around my arms and thighs were flabby and loose - no flesh.

For the first two weeks I wore very loose clothing and sarong. The third week I discovered that I could fit into my old clothes as I got back my girl-fiqure shape before marriage. This was the plus advantage of my post-op. Still I am careful not to wear any pants with the waistline near the wound scars. I tried to wear those with below the waistline - the hipster types.

Fourth Week ( 4-3-08) (Tues)

This week was uneventful - just the daily routine. My relatives came and my family brought them out for dinner at the restaurants. I tried to eat some of the non-fried, non-spicy food such as tofu, stir-fried vege and steamed fish. My relatives commented that I ate like a bird's ration. At home I ate a little of the different variety of vegetables such as broccoli, spinach, sawi, lobak, yao mak, etc. and a few slices of fruits like pear slices, apple slices, dragon fruit, banana, and papaya. My weight was and is 45 kg (100 lbs) till now and I try to maintain it. My daughter envy my weight and my slim body figure.

Monday (10-3-08)

Today was my appointment day with Dr Ramesh. He told us that my stomach biopsy is good as the lymph nodes are clear and everything is okay. BUT he is worried that the type of cancer cells I had (poorly differentiated adenocarcinoma ) were aggressive and invasive types. He suggested chemotherapy treatment - 1 month 1 chemo for 6 times. This is to play it safe in order to eradicate the C cells from my blood stream. I was not happy and unsure as I knew that the chemo will kill off some of my healthy cells. Dr Ramesh reassured me and asked me to rest well at home and build up my strength. He will see me in 6 weeks' time. Meanwhile he will consult with another oncologist about my case. He also advised me to have vitamin B12 jabs every 3 months so that my iron and folate acid can be absorbed well into my body.

Dr Ramesh wanted to start a support group for stomach-cancer patients for there is none at present in the hospital. I am interested and agreed to help in any way I can. This blog is part of the reason I write my experiences before my grey cells deteriorate. Hopefully others will find it useful and learn something from it.

The important thing is to listen to the doctors especially after surgery, have a positive outlook, be knowledgeable, trust in God and modern medicine and do everything within one's means to lead and live a healthy life. e.g. Eat healthy food, drink juices, do exercises, meditate, participate in social activities, contact friends, be HAPPY and LISTEN to your body.
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Friday, March 14, 2008

Useful Sites for More Information & Help

This organisation provides volunteer support to cancer patients especially in terminal stages. But, they also cater for monetary needs and moral support too.




  • MAKNA (Majlis Kanser Nasional)
    BG 03A & 05 Ground Floor,
    Megan Ambassy,
    225 Jalan Ampang,
    50450 Kuala Lumpur, Malaysia
    tel:+603-2162 9178 fax:+603-2162 9203
    http://www.makna.org.my/
Look up at this site too for my story published by MAKNA on Neoplasia Quarterly edition Q1 & Q2 2008 at :
http://www.makna.org.my/inspirational_Irene.asp

These are the sites that I went through to gain more knowledge for myself as I believe that the more I read and know about my condition, the more prepared I can take care of myself and have less fear.



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Thursday, March 13, 2008

Dietary Information

Partial or total gastrectomy patients' diet is very important. There was not much info or help obtained from the local hospital dietitian as their menus were catered for general.

Patients after this surgery will only have part or none of their stomachs in their bodies, thus nutrient absorption is important to retain and regain their weight and strength.

Below are some very useful information that an overseas doctor and dietitian friend have provided and I would like to share this as it does help me and given me ideas on how I should plan and take my meals as well as what type of food I should take.

Good Nutrition after a Gastrectomy

Some of the problems that may occur after a gastrectomy (removal of part or all of the stomach), are early fullness, weight loss, anaemia and dumping syndrome.

Dietary recommendations to help overcome these are:-

Recommendations

Early Fullness

* Eat small frequent meals. Spread your food throughout the day. Have 6-8 small meals rather than 3 large ones. This will get less with time.

  • Avoid fluids with meals. Drink ½ - 1 hour before or after your meal when your stomach is not so full.

  • Chew food well and don’t rush over meals.

Anaemia

Vitamin B12
If you have had all of your stomach removed, Vitamin B12 can no longer be absorbed. You will require regular Vitamin B12 injections. In my case, doctors have advised me to take this every 3 months eventhough I have 1/4 of a stomach. This helps the nutrient absorption.The medicine can be bought at any pharmacy( in liquid ampuoles type ) and brought to any normal clinic for the doctor to administer the injection.

Weight Loss

  • Focus on high protein foods. Include ‘protein foods’ with all your meals eg. milk, eggs, fish, poultry, nuts, beans, legumes (beans and lentils), yoghurt and cheese.
  • Use high protein milk ( Enarcal Plus / Ensure ) whenever possible (see recipe) eg. in desserts, sauces, milk drinks.
  • Have nourishing meals and snacks eg. cheese and biscuits, milk drinks, yoghurt, scones, raisin toast, dried fruit, nuts, peanut butter on bread, sandwiches, milk desserts, scrambled eggs, steamed eggs with minced meat and tofu.
  • Replace fluids such as tea, coffee, clear soups, water, with milk, egg flip, milkshakes, thick soups like chicken soup, mushroom soup, fish porridge or congee.
  • Weigh yourself weekly. If you are losing weight, contact your dietitian for further assistance.
Sample Meal Plan


Breakfast
Lunch
Dinner

Fresh or canned fruit
Egg / Cheese
Bread / oats
Margarine / Butter
Vegemite / Bovril / Marmite
* 1 glass high protein milk (see recipe below)

Sandwich / Butter / Margarine
- Meat, Cheese, Chicken
- Salad, eg tomato, lettuce, broccoli, spinach

Fresh or tinned fruit
* Tea/Coffee with milk

Meat / Fish / Chicken
Potato / Rice / Pasta
Vegetables or Salad
* High Protein milk
Morning Tea
Afternoon Tea
Supper

Crackers and Cheese
Scones and margarine
Yoghurt / Custard / Milk Pudding
Fresh or canned fruit

* Drink 30 - 45 minutes later, half an hour before meals or an hour after meals.

Snacks or Supper

  • Biscuits and cheese

  • 1/2 a sandwich with protein
    filling

  • Toast, raisin toast

  • Scone, crumpet, muffin &
    spread

  • Milkshake, flavoured milk/
    smoothie

  • Supplement drink eg
    Sustagen, Ensure, Enercal Plus

  • Yogurt

  • Boiled egg

  • Cake, biscuits

  • Muesli bar

  • Chocolate

  • Fruit salad and yogurt

  • Corn chips. Potato chips

  • Instant noodle with protein meat, fish

  • Fresh or Canned fruits

  • Left overs
Recipe for High Protein Milk


60g (¾ cup) skim milk powder
500mls (2 cups) milk
Beat together

Add flavouring or pureed fruit as desired.

Use as a base for milkshakes, eggflips and in soups, sauces and desserts.


Dumping Syndrome

Dumping syndrome occurs to a small number of people following a gastrectomy. It is caused by the rapid dumping of food in the intestine. Two types of dumping can occur. Early dumping (15-30 minutes after meals) this can cause nausea, vomiting, stomach bloating, cramping pains and diarrhoea. Late dumping (occurs 2-3hrs after meals) is associated with palpitation, sweating and drowsiness.

Dumping syndrome can be avoided by:-

  • Avoiding drinking with meals. Fluids should be taken 30 minutes before or after meals.

  • Have small frequent meals. Avoid very hot or very cold fluids and foods.

  • Eat slowly and chew food well .

  • Avoid foods containing large amounts of sugar. Sugar is emptied rapidly from the stomach resulting in the symptoms above. Some high sugar containing foods include:-
    - soft drinks, cordial, fruit juice, flavoured mineral water, cakes, biscuits, chocolate, honey.

  • Avoid alcohol.

LESS TOLERATED FOOD AFTER GASTRIC SURGERY


  • Sweetened cereals, donuts and sweet rolls

  • Frozen or dried fruit, fruit cooked or canned with sugar,
    sweetened fruit juice, prune juice.

  • Malted or chocolate milk, sweetened custard, pudding or
    yogurt.

  • Cakes, cookies, pies, ice cream, jams, honey, lollies.

  • Carbonated drinks.

SOME LOCAL MALAYSIAN FOOD

* Chicken rice

* Dumplings ( har gow, dim sum, siew mai)

* Chee cheong fun

* Fish ball / paste noodles

* Pork, chicken, beef meatballs with beancurd + a dollop of sesame oil

* Soya drink , tau foo fa ( any milky pudding)

* Steamed fish with bean curd

* Steamed minced meat and egg (with tofu)

* Porridge / Congee with fish, minced meat , egg, ikan bilis

* Bubur cha cha

* Red / green bean soup

* Stir-fry vegetables -- leafy vegetables should be chopped up and chewed well

* Midmeal snacks -- small serving of peanuts, almonds, cashews, pumpkin or other seeds ( must chew well and finely :- very important )

FRESH VEGETABLE & FRUIT JUICES

Daily I drink 2 types of raw vegetables and 2 kinds of fruits. I used an electric juicer to extract the liquid which I drink immediately in order to prevent oxidation. In this way I hope to keep myself healthy and avoid falling sick.

Eg : 1 Carrot + 2 stalks of Celery + a large red apple + a large orange
or
1 Carrot + + Cucumber + a green apple + a guava

Raw Vegetables ..................................Fruits
Carrot....................................................... Green / Red Apples
Leek ..........................................................Guava
Beet root ..................................................Pineapple
Broccoli .....................................................Star fruit (carambola)
Spinach .....................................................Orange
Cabbage ....................................................Pear
Cucumber .................................................Mango

You can mix and make any combination of fruits and raw vegetables according to individual taste and how palatable you can swallow.
In the beginning, I could drink only 100 ml of the juices. Slowly I increase it to 150 ml, 200 ml and now after a month I can drink a full cup (250 ml)


Liquid Diet

For the first few days after surgery, I drank enercal/ensure milk, water, plain milo, soya milk, watery porridge / broth, strained chicken or vege soup, cereal / oat porridge plus enercal/ensure milk, yogurt drink, etc. Fruit and vegetable juices are an important daily drink. Slowly I increased the amount of liquid from a quarter bowl to half a rice bowl.

Later I change my liquid diet to a soft and low residue ( no high fibre) diet. For example, I soaked half a slice of bread or a cracker biscuit into my milk. I ate more steamed white flesh fish like pomfret, tofu slices, blanched broccoli, sawi or kale and carrot slices.



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Post-Op Stay in the Hospital - Diary

This diary was recorded by my daughter, Iris, as I was too weak
and slowly recovering from the operation in Ward 8B.

5-2-08 (Tues)
Dr Jacinta gave anesthetic Epid Cocktail - dosage increase from 6 mg/hr to 8 mg/hr ( 1.30 am)
She explained that if given more, my mom's BP will drop and heart beat will be slow. Mom is still in pain and could not get up to sit. She wore tight stockings to prevent blood clotting. A nose tube to drain out the 1/4 stomach fluids, Intravenous drip tube for sodium chloride / glucose to feed mom thru her hand vein , Urine tube to drain her bladder.


6-2-08 (Wed)
Morning 4.30 am fever 38.2*C. Used a wet towel to sponge mom. Her abdomen, throat and nose painful. Can hardly speak up as her throat is painful after surgery insertion. Sleep mostly.

7.00 pm epidural machine seem faulty as a sharp beep keeps on alerting. Called Dr a few times but due to festive CNY holiday , only one Dr is on call and she is busy in the ICU unit.

Dr Balen, the anesthetic Doc, came at 11.30 pm to change the epidural machine and medicine to morphin. They took out the epidural needle as the tube is clogged. Morphin given through vein (near wrist) and manual control (ASP) by patient. Each time mom presses the button, 1 mg of morphin is inserted + m/c will be locked for 5 mins before the next insertion can be made.


7-2-08 (CNY) (Thurs)
With this morphin, mom can be propped upright in the sitting position in the morning. Her legs did not feel numb + can fold up slightly + can talk too. She has a plastic gadget named TRIFLO II consists of 3 plastic balls in 3 columns. It is a breathing exerciser tool. Mom can breathe one ball up high (max level) but Dr wants her to breathe 2 balls up. She must practise it hourly or as much as possible. Dr wants her to sit on high chair tomorrow.

Mom gargled and spit out the water to keep her mouth + throat wet. Mom is on NO liquid + solid diet. Slight fever at 9.00 am ( 37.4*C). She is on oxygen tube. Her left hand is swollen. Dr Maha asked Dr Azahana to change the intravenous injection outlet to the other hand. At 12 pm the nurses change the tubes and morphin medicine to the right hand.


8-2-08 (CNY) (Fri)
Right hand also slightly swollen. Was asked to shift from Bed 23 to Bed 17. In the afternoon my brother+ Dad got mom on a high chair beside the bed at 4.00 pm. Manage to sit for about 2 hours.

When Mom stands up she can move her legs up + down a few times to exercise. Today fart also. Urine is clearer. Mucus from nose tube no more but need to keep it on another day to monitor. Oxygen tube was taken off.
Used cupped hands to beat mom's chest and back to loosen phlegm /mucous in her lungs.(pysiotherapy) Mom feels and sounds better after doing this. ( Did this "beating" for mom every morning + night during her stay in hospital).


9-2-08 (Sat)
Morning help mom to brush her teeth with a small empty pail + a cup of water with straw.
9.45 am mom able to walk to + fro ten small steps before sitting on the high chair. Dr Azhana informed us that Dr Ramesh has given the green light to take out the nose tube and urine tube.
Have to check with the anesthetic Dr first to take out the morphin machine as it is difficult to go to the toilet with it.

10.00 am - Nose tube taken out
10.30 am - First sip of clear water
10.40 am - 20 ml water
11.30 am - 20 ml water
12.30 pm - 25 ml water

8.30 pm - 50 ml water


10-2-08 (Sun)
Morning able to walk to toilet. Morning walk one round the ward to the door and back.

9.00 am - Can breathe one + 1/4 balls up on her plastic gadget

10.30 am - Dr Ramesh came + said that mom can take some milo with milk powder. Requested
to go into first class ward as the present ward is too congested + noisy because of accident patients.

Afternoon move into ward 2C ( 4 patients in a room) with air-cond + nearer bathrooms. Morphin PCA taken out + substitute with painkiller pills.
8.00 pm - mom drank 1/3 cup milo plain( no sugar + milk)


11-2-08 (Mon)
Dr Ramesh + Dr Grace came. Inform nurse to take out drip + stockings. Can start on porridge + probably be discharged on Wed or Thurs.

Mom took some milo with evaporated milk ( Hosp has no milk powder) Mom 's tummy felt uneasy. Probably will skip the evaporated milk next time.

Blood test for potassium ok.
9.00 am : BP 117/72 -ok. No fever

10.30 am: Mom got diarrhoea + felt fainting + weak
Blood sugar checked ok (7.8)

Dr Marie came and gave oral rehydration salt + was asked to monitor mom. The sudden diarrhoea may have caused the faintness and probably the gut is also starting to work now.
Need to monitor. If persistent, will do blood test to check salt, sugar etc + go on drip again.

1.40 pm : mom can breathe 2 balls up high to max sometimes.

8.00 pm : Took Omeprazole for stomach reflux ( twice a day - one in the morning + 1 at night)
Mom is still taking it until now.
Painkiller Dramadol ( 3 times a day) Before the end of first week at home, mom stopped taking it


12-2-08 (Tues)
7.35 am Dr Ramesh came + told Mom that she can be discharged today.He saw that she was recuperating well. Will see him in a month's time.


10.00 am The wound stitches, actually 32 metal staples, are taken out carefully. A couple of them tear and bleeds. Dr Marie came to inspect them and found them to be okay as there is no pus. Dr Marie wrote the discharge summary and after waiting for a while for the medicine, we took mom home before noon time.
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Wednesday, March 12, 2008

CNY scare Diary

14-1-08
Endoscopy in Tuanku Jaafar Hospital Seremban. 2 cm ulcer. Given Pantoprazole + 2 types of antibiotics : Amoxycllin + Clarithromycin for 2 weeks. They are to kill the helicobacter pylori bacteria and heal the ulcer.

28-1-08
At SOPD Klinik Pakar T. J. Hosp. my biopsy showed CA cells : differentiate adenocarcinoma cells with signet ring (mad cells + aggressive types) Shock to hear that my stomach has to be cut out.

31-1-08
Had a CT Scan - Stomach X-Ray ( barium upper GI series ) Brief glance result : T2NoMo
( ie stage 2 cancer cells in the stomach wall muscles, lymph Nodes clear, no Metastasis - no cancer spread to other organs)

4-2-08
Met surgeon Dr Ramesh and was admitted into ward 8B at 11.00 am. Had light breakfast in the morning and agreed to fast till afternoon for another endoscopy to be done by Dr Ramesh.
In the ward, nurses draw blood for tests, BP 120/80, ECG heart reading normal,
anaestestic Dr Hafiz explained about epidural at my spine for the pain after op.
Afternoon, Dr Ramesh informed that he will cut out my gall-bladder as it shows stones in my CT Scan.

5-2-08 (Surgery)
Operation : Lap staging, Lap assisted subtotal gastrectomy with D2 dissection, open cholecystectomy. Pre-op Diagnosis : Gastric Cancer
Operative Notes:
i) Perioperative Antibiotics : IV Unasyu 1.5 gm stat
ii) Operative Findings : lap staging- No liver, peritoneum nodules
No serosol involvement of tumour, No ascites,
No enlarged lymph node seen.
Probable stage : T1, N0, M0
Open Surgery : No probable tumour, only thickening at the lesser curvature felt,
No liver nodules, few small lymph nodes seen along the common hepatic
vessels and left gastric vessels.
Surgery Duration : 4 hr. 42 min. ( 10.15 am - 14.57 pm )
Anesthesia duration : 5 hr. 29 min. ( 9.35 am - 15.04 pm )

Dr Ramesh informed that he managed to save 1/4 of stomach. Gall bladder taken out.
Lymph nodes and part stomach taken for pathology tests. Waiting results.
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