Dr. Hashim's JofHappiness: Taking Care of a Cancer Survivor Patient

1. Introduction. This article is a special tribute to my wife, Kamariah, who suffered a cancerous (tumor) growth in the head, underwent surgery and post-surgery treatment and now after more than five years is coping well. Her story is being written here to share the challenges and experiences we went through and perhaps it may provide lessons to those who may go through this similar painful journey.

Kamariah and I were married in 1962

With the Beijing Olympic torch and track suit as I was one of those selected to promote the 2008 Beijing Olympic Games in Kuala Lumpur

The usual 'kemaafan' on the Hari Raya morning

With members of the family - from left Nizam (son-in-law), Rozana (daughter), Kamaria, Syabil Aiman ( youngest cucu - in front of Kamariah), Rosmin (son), Syafique (cucu), Rozita (eldest daughter) and her husband, Roslan. Not in pic Shadzwan (eldest cucu studying in UK)

2. Symptoms. It was early in the year of 2009 when Kamariah complained that she felt that her right leg was heavy and that she could no longer control her right arm and on a number of occasions it just slowly touched the hot frying pan as she was frying bananas, fish or cakes - a few burnt marks was testimony to her ailment. On hearing her plight I thought it was associated with the muscles as one gets old muscular dystrophy is common. In April that year, a friend, Prof. Don Yates, with his wife from Perth, Australia visited us and with another friend, Dato’ Kamaruddin Kachar and his wife, decided to take them by road to Langkawi. We stopped at Kuala Kangsar to see the freshwater turtle breeding centre and Batu Feringgi, Penang. While walking to the night market in Batu Feringgi, I noticed that Kamariah had difficulty walking and on a number of times fell on the ground. It then dawned on me that she is suffering from a more serious ailment than the ordinary muscular one and on my return after the four day trip, brought her to the family doctor friend, Dr Nor in Bandar Baru Bangi. On having heard how Kamariah described the symptoms of her health problem, she indicated that Kamariah might be suffering from an illness which might actually have its origin in the brain. She issued a medical note to be handed to a specialist at any of the hospital that we planned to go to. She advised that Kamariah be immediately be seen by a specialist at a hospital with the desired medical equipments (scanners). The next logical step was to go to the nearest hospital, Serdang Hospital. However, on checking at the reception to get an appointment, she could only be slotted in to see a specialist in two months. I did not pursue further with the Hospital on the urgency of the appointment as I see another opportunity of getting a specialist to examine her at the National Heart Institute (NHI), where, Kamariah and I go for our regular medical check-up once every six months, and the next scheduled check-up was three days away.

I recollected it was a Monday in May that we left our house early for NHI. It was around 10 am that Kamariah managed to see the cardiologist. I handed to the doctor the medical note given by Dr. Nor and on reading the note, Kamariah was immediately wheeled to the room where her head was scanned. The doctor on examining the photograph of the scan, which came soon after, informed that there was cancerous growth but he needed confirmation from an oncologist. He told us to return to his examination room at 2.00 pm. When we returned at 2.00 pm, the oncologist report confirmed that it was a tumour and that Kamariah needed to be treated by a specialist at a hospital with an oncology unit. The options that I discussed with the doctor were the General Hospital (GH) Kuala Lumpur, University Hospital (UH) of University of Malaya and University Kebangsaan Malaysia (UKM) Specialist Centre. At GH, the doctor advised us, there was a long cue of patients and we have to wait for our turn. It might take quite some time. I was not familiar with the expertise at UH and having heard of many positive things about UKM, I opted for this Hospital. The doctor then rang up the Hospital and he confirmed that the Hospital agreed to admit Kamariah the following day. The doctor advised that all close family members be informed.

On returning home I informed my children and other close family members. The family members gathered together that day. That night we held special prayers ‘doa selamat’, led by our grand- nephew, Azmi bin Azizan, who has just returned from his Islamic study in Syria, for Kamariah successful treatment and recovery.

2. 3. Treatment. It was on Tuesday morning that we checked in at the Specialist Wing of UKM Hospital. We were first interviewed by a doctor and the first question was whether the treatment for Kamariah would come under the usual government pensioner scheme or we would pay for the treatment. Under the government pension scheme Kamariah would have to wait. Considering the urgency that she was given immediate attention and the best possible treatment the family decided that she be treated as a private patient. She was then admitted to Wad Sutera Biru (?) at the Specialist Centre of the Hospital. She underwent further scan at the Hospital and on Wednesday I had a discussion with Prof. Azizi, a surgeon, a medical specialist, to whom Kamariah was assigned to. He indicated that Kamariah had a window in the operating theatre the following day (Thursday 22/5/2009). Thus, at 12 noon on that day, Kamariah was wheeled to the Operating Theatre with members of the family accompanying her. She appeared calm and ready to accept her fate. In the mean time news of her predicament spread among her friends in Woman Institute, Rukun Tetangga and the ‘kutu’ (savings) group who also prayed for her well-being. It was at 6.00 pm that day that we were allowed to visit her in the Intensive Care Unit (ICU) and she was already conscious. I was informed that the whole surgical process took around four hours. She was at the ICU only overnight and the following day she was back in the original room in Wad Sutera. She was hospitalised for a total period of 10 days. The clinical data had this report:

‘K/c arrhythmia with cardiomegaly. Presented with one month history of right sided body weakness, headache and poor memory. CT & MRI brain showed large frontoparietal perifalcine mass with peritumoural cedema & right frontal dense mass....the tumour measures 2.5x3.5cm...The tumour cells are seen infiltrating into bone marrow spaces.... Diagnosis: Atypical meningioma WHO Grade 2’.

It was fortunate that she was treated early at Grade 2 level. If it was late, as the doctor said, the cancerous cells would have pierced the membrane damaging the brain tissues and the affect might be more serious.

3. 4. Post Surgical Treatment. On the discharge from the hospital, Kamariah was on a wheel chair. She went through radiation therapy for 30 days. Every morning of a working day for those number of days I had to drive her to the Hospital in Cheras. She was not able to walk after the surgery. When she was in this condition, not long after, she was noticed by a contractor, Encik Khalik Khoo, who was servicing the house air conditioning units and suggested that she be treated by an acupuncturist,Mr. Goh, whom he knew. Mr. Goh attended to her soon after. He started massaging the key points and after perhaps two weeks, Kamariah felt there was a positive effect and slowly she was able to take, initially a few steps and subsequently able to walk slowly.

After the surgery and radiotherapy there was no other medication. Our daughter, Rozana and I search through the internet information to get guidelines as how to take care of a cancer patient. Two key things emerged – one, Kamariah needed to build up her immune system as the radiation treatment might have damaged the healthy cells and at the same time, build up the mechanism to fight possible invasion of foreign organisms that can affect her weakened body; secondly, a cancer patient needs to be in a happy environment, absent of things that could be stressful. On building the immune system, it was decided through the suggestion of a friend that she takes a health supplement 4LIFE TRANSFER FACTOR which Kamariah has been taking religiously up to now. The other practice is taking herbal formulations – taking the shoot of ‘jarum tujuh’ (Pereskia bleo) as ‘ulam’ and ‘pecah beling’ prepared as watery concoction.

For a period Kamariah was following the various exercises to strengthen her legs and arms particularly the affected right side of her body at the physiotherapy units at Putrajaya Hospital and UKM Hospital.

To monitor possible recurrence of growth of the tumour, she underwent initially three monthly scan, followed by a six monthly and then yearly. Kamariah was given a clean bill of health after three years.

4. 5. Taking Care of A Cancer Patient. Though the acupuncture treatment appeared to have helped Kamariah to be able to walk but the right leg is still weak. She practically has to drag her right foot and thus has to be assisted when she moves around in the house or taking a walk in the garden or in a shopping mall. It appears that a little walk or chore she gets tired easily. She has a little problem with her memory as she forgets names and her earlier actions, easily. Often, she goes through muscular pains of the shoulder, arms, back and legs. Accordingly she cut off many of her activities. She was a Committee member of the Bangi Branch of Women Institute, Rukun Tetangga. She did not participate in their meetings and activities. Since her illness she has not attended the monthly religious classes organised in the community. It is the same with her gardening. Her orchids and pots of ornamentals are not cared. She loves cooking and her curry kepala ikan jenahak, her ‘masak Aceh asam sunti, her ayam goreng, pisang goreng are well-known among the children, grandchildren and friends. Now she seldom cooks these dishes anymore. She will also only occasionally attend wedding receptions. We also usually, two to three times, took out time off to travel in neighbouring countries like Indonesia and Thailand. But after the surgery she has no interest in overseas travels. For all intent and purposes she shies away from outside activities. She spends her day reading a little; watching the news, dramas both local and international (Indonesian and the Philippines); whenever she has a chance visiting and being with the grandchildren.

We have three children and only three grandchildren. Our eldest, Rozita, is married but has not been blessed with any children. Rosmin, the second in the family is already 50 but is still single inspite of the pleadings of his mum who wish to see him get hitched, as she put it ‘before we go’. The children usually visit us during week-ends.

Ever since my sick mother was being looked by us at our home, we have employed Indonesian maids to do household work and assist in the cooking. The first, Tusmi, from Banyuwangi in East Java, stayed with us for eight years. She was a quiet, dedicated lady, who particularly gave her loving care to my mother until she passed away. Tanti, the second one, from Central Java was not the home type and ran away after six months. The third, the present one, Sunarti, also a Javanese has been with us for three years and she is devoted to Kamariah. Having a maid certainly help in undertaking the day to day chores of cleaning and cooking. However, as only the two of us are at home, the full responsibility of looking after Kamariah rests on my shoulder.

Of course when Kamariah was diagnosed with cancer it was devastating. However I took it in stride recognising this is part of my life. I wanted her to have the best medical attention, with whatever resources we have as a result of our long term planning for retirement particularly having adequate financial means, coupled with the medical privileges accorded as a government pensioner. In addition, I decided to provide an environment at home that she is always happy, as according to what I have read, it is important that a cancer survivor lives in a conducive happy home. I attuned my mind that I have to be very patient, control my temper and that I myself too must always be in a happy mode. This is not difficult as I am a strong advocate of healthy, active and happy living. Also, taking care of her provides me the opportunity to pay back for all the great things that this wonderful lady has done in our more than 50 years together - as a wife, mother of the children, cook, housekeeper, daughter in-law, gardener, advisor. She took care both my parents when they were ill until they passed away in our home. I thank my lucky star that at least I am healthy to ferry her for medical treatments, providing support as she moves around, do marketing, cleaning, cooking, washing the dishes, washing and drying clothes, closing the windows and doors and ensuring that they are properly locked, switching the lights and air-cond systems, feeding the many cats that roam the house compound, driving around, communicating and doing one thousand and one things that a head of the household has to do. Often I have to be a masseur applying the oils and massaging her aching muscles and limbs. I have to schedule my time so that she is not home alone, schedule my many appointments in accordance to her needs as I still have my business commitments, activities in the Academy of Sciences Malaysia as a Fellow, President of Persatuan Alumni MARDI and a few other NGOs. Above all, it is a great test of my values as a human being and that I have keyed my mind that I am going to enjoy performing all these duties and responsibilities as a husband and head of household.