28th Month into Glivec

In November 2016, dad went for his CT Scan. He had been going through scans for monitoring the tumour on 8 to 9-month intervals. Same procedure that he has now accustomed to. His oncologist was satisfied with the results.

The tumour size remains unchanged. Tiny lesions in a few places remain stable, are probably benign. Dad will continue to consume Glivec as it is working for him. He has lost a bit of weight as compared to 3 months ago. His Dr isn’t concerned about it. His blood sugar is good, well under control. He is encouraged to eat more. I’m relieved that all’s good.

Dad continues with his morning walks around the lake garden on clear mornings. If it rains, he’ll stay home. Life goes on as usual. Watching over grandchildren at home, having breakfast and tea with friends and catching up on soap operas on TV. During weekends, get will go shopping or eating out with my brothers. I’m pleased that my second elder brother is back and staying nearby. Sundays are family gathering day for my two brothers with my parents.

The next routine meeting with dad’s doctors will be early March 2017. I hope by then, he’ll put on some pounds. We shall continue to pray for my parents’ good health and living a happier and fulfilling life. I am sure this new year is going to be a wonderful year for them. Now, planning for their next holiday destination. It is good for them to relax and be in new environment once in a while. Feeling happy is a great medicine to better health, besides exercising.

Our program with Max Foundation is still active and we are grateful for the continuous support from them. Thank you, Max Foundation.

Here’s wishing everyone a Happy and Fulfilling New Year in 2017!

Cheers,

Alice N.

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24th Month into Glivec

2 years into Glivec. We are optimistic and thank God for the blessings we received to see Dad doing well. On the last CT Scan we did not see any change to the size of the tumour. It is still a piece of good news as the medication is working to suppress the growth.

At our most recent follow-up consultation with the oncologist, we were told that the tumour has after all shrunk to a safe size for surgery. However, the surgery will not be focused on one part only i.e. removal of a part of the stomach. In fact, it would also require removing a part of the liver and the adrenaline glands. Thereafter, dad may still be required to continue with the medication. Dad was stunned and I saw that he was perturbed by the news. He told the Dr that he would not consider multiple major surgeries due to age and medical condition. The Dr then advised that he should continue with the current prescription. We shall see how it goes in the next scan.

Dad is still going strong despite the GISTs. He is a happy-go-lucky guy, strong-willed and an independent man. His next CT Scan will be due in November. Continue to pray for good results….Meanwhile, he just carries on with his daily activities, never fail to exercise early in the morning on daily basis, weather permitted. Once in a while mom and him will go for a holiday or two, nearby.

On his 78th Birthday, we celebrated in the revolving restaurant at the tallest tower in the country, hosted by the owner himself. Thank you so very much, our dear friend. I was so happy to see my parents enjoying themselves, VVIP treatment at that. So did my brother, sister-in-law, niece and nephews. Missing those who couldn’t join us on that evening. Such wonderful birthday for Dad. Glad I got them to travel down to Kuala Lumpur for this special celebration. Happy Blessed Birthday, Dad and we love you lots!

If you have followed my blog posts since the beginning, you’ll know that my dad has much influence on me growing up. I am who I am because of him. He showered upon me unconditional love, support and guidance. Since very young, he thought me about responsibility, being independent, decision making, problem solving and leadership. My dad chose to teach me to fish rather than fishing for me. Thank you, Dad. You are the best! All I want is to see him happy and live a fulfilled life. Besides being a great father, he is a wonderful, loving and romantic husband to mom. He is such a rare gentleman. Loving them both to the moon and back. Cheers to love and life.

~ Alice N.

 

 

 

 

14th Month into Glivec


Three months had passed since the last CT Scan. Recent meeting on 17th September, with the Onco was just for a chat and to get to know how dad has been doing the last three months. Glad to say that dad is doing well. Weight maintained. Blood test results look rather alright, doctor isn’t concerned about the slight difference in one or two numbers. The brittle nails have recovered except for one, the right forefinger. Dad will continue to apply homemade coconut oil onto it and other nails as maintenance. Considering dad’s improved condition, Dr Mellor says that it is not necessary for us to meet as often. The next visit shall be in four months’ time in mid January 2016.

The visit to the endocrinologist, Dr Chan was great! Blood test results are good especially his blood sugar. Perfect! His regular home-kit test results showed a couple of low readings (tested two hours after lunch). Dr Chan reduces the insulin dosage but encourages dad to do what he has been doing all along, i.e. the exercise, 7 small meals, etc. She further advises dad to stay longer during the next visit because she intends to revert dad to taking tablets. For that, she needs to monitor his progress every two days once he stops his insulin injection. This is excellent news for dad! Let us pray and hope that blood test results will show as good report so that dad can revert to tablets. No more insulin injection! I know he suffers, especially the initial several months. He had never injected himself before; was anxious and clumsy. Thank you, God for answering to his and our prayers.

Bravo to dad! He is serious about getting well and therefore, has the discipline to follow strict routine. I can always count on dad. He knows very well how I feel and he does not wish for me to be worried for him. Thank you dad, for feeling better, for being strong for yourself, mom and us.


Not forgetting, we owe it to the Max Foundation
. Without the Max Foundation, it would be much tougher for us to follow through with the treatment. We are most grateful to Dr Mellor and the Max Foundation. The Max Foundation is a global health organisation; firmly believes that all people living with cancer have the right to access the best treatment and support. Thank you!

Regardless whether you are a cancer patient or a caregiver, it is important to join a good support group. No one else can understand what you are going through as well as those who are in the same boat as you. There are many over the social media. I am a member of the GIST Support International (GSI) group in Facebook. Members are mostly GIST patients, and fellow caregivers. At GSI, everyone is supportive of one another. We share our experience and knowledge. The community also shares fears and concerns. Members are from all over the world. We are one and we are family. We continuously receive news, information as well as virtual hugs and cheers within this group. We share good and bad news freely. We send wishes and prayers throughout the globe, for those in need. Love is all around. And we hold dearly to our Purple Ribbon with much hope. Thank you, fellow Gisters! Love you all!

My dearest readers, if upon reading this, you feel deeply for the Gisters, please offer your prayers to them. 🙏🏻Thank you and God bless.
~ Alice N.

11th Month into Glivec

The time has come for Dad to go for another CT Scan. Silently, we pray for positive results. Dad has been doing well. Keeping himself healthy by exercising every morning, weather permitted and also eating well. He eats 7 small meals a day due to his insulin injection and to keep the blood sugar reading under control. One oat drink before setting out for his morning walk, a bowl of noodles after his walk and snacking on some biscuits/bread at mid morning; lunch, tea, dinner and supper. So far so good that his endocrinologist fully supports his diet.

On 22nd June, mom and I accompanied dad to the hospital. He is now familiar with the procedure that he is fully at ease with it. I’m glad. The results were out in the afternoon. We eagerly proceeded to the Oncologist’s room. We are most pleased to hear that the tumour size has reduced so do the lesions in the lungs. These are the two critical areas.

Dr Mellor informed that should we wish to consider surgery to remove the tumour, we can do so now that it has shrunk to about 2 cm. I asked if dad would still need to take his Glivec post surgery….and he said most likely because there are areas still with lesions present, especially the liver. We may have to continue with Glivec to keep the others under control. Dad declined the idea as he still needs to consume Glivec. Dad is confident that the tumour will further reduce in size with Glivec. Dr Mellor agreed with him based on his age and overall health condition. Dr Mellor is happy with the scan results. Words can’t describe my joy upon hearing the news. I thank God for His blessings and watching over my dad.

The visit to the Endocrinologist was a good one too. Dr Chan was very happy with dad’s blood sugar control. She voiced a little concern over a couple of low readings. Dad’s insulin injection in the morning shall remain but with at a reduced dosage and taking the same prescribed tablet after dinner. Blood test result was excellent.

This is another successful visit to the hospital. I feel so light and happy to know that dad’s progressing well. I can see on the faces of my parents that they are glad that their hard work paid off. I know it isn’t easy to keep our heads held high despite fears, worries and concerns in our mind. Bravo, dad and mom!

The following visit shall be in 3 months’ time, merely consultation. Dr Mellor doesn’t like to repeat CT Scan in a short span of time to avoid over-exposure to radiation. It is not good for anybody more so for a weaker body.

Dad has been on Glivec for almost a year. Looking back, this one year has been most eventful, with the first 5 months being the scariest of all. It was emotionally  draining too. I can’t imagine how mom went through it everyday as the primary caregiver. I can only imagine dad’s fear in facing such situation while trying to protect his loved ones from worrying more. I guess it took a toll on mom when mom was admitted for suspected heart attack, 3 months after dad’s diagnosis She went through tests after tests. Relieved washed over us when we were told she is OK. She was prescribed with smaller dosage of aspirin as a preventive measure. Her condition will be monitored by the local hospital.

I feel that having a family member contracting cancer is the last thing one would expect to happen. It is the worst news for anyone. The first few things that cross people’s minds would be the pain, course of treatments and financials. Thinking back, while I was sad upon hearing the diagnosis from the Dr, I had to keep a brave front for my parents and brothers. Armed with positive mindset I tried to instil the same optimism to both of them especially mom, who is a worrywart. I preached about team work, emphasising that it is treatable, there is always hope. The battle is dad’s but we must stand by him to cheer him on. Mom has to watch over his food too. I read up books on cancer survivors and about GISTs. I opened a medical file and add a health journal on this blog.

Created support group within the family, I roped in my younger brother to spend more time with them and to watch for any sign of small ailments, whatsoever. I am most grateful to him and my sis-in-law for being around my parents. Thanks to the twins (brothers) who will speak to them from afar once in a while. With most children living separately and distant away, it is important to keep in touch to let them know they’re thought of and also to let them listen to our voices. My parents are most understanding when we can’t meet as often as we wanted to.

I can say now that we had gone through the worst together. Nonetheless, we still need to continue doing the right thing…i.e. daily exercise, eating well, positive thinking and enjoy life. Life is short. Let us live our daily lives the way it should be..happy, contented and meaningful.

Thank you my friends, for your prayers and wishes for my dad.

Cheers,

Alice N.

9 Months into Glivec/ Gleevec

It was mid April that Dad was due to his visit to his Oncologist and Endocrinologist. He looks well and we’re glad that know that he has put on some weight. He lost quite a lot of weight last July. Good to note that he is gradually getting back to his usual weight. His appetite is good too! He is eating 7 meals a day. These are small meals and proved to be good for his blood sugar.

At this visit, his Oncologist told us that he hardly felt the tumor. That’s a good sign but he should be due for the next CT scan (6 months apart) in June. He will still continue with Glivec as it is doing its job well so far. New side effect noticed was the sign of brittle nails. They look like old, dried and peeling nails. No pain or any discomfort felt, just the look of the nails. His doctor took a few photos of the brittle nails to report back to the manufacturer, I guess. We couldn’t find any recorded side effect that’s pointing to nail issues. I was thinking could be happening to Dad as an isolated case or Asians perhaps, due to our livelihood and diet?

I also notice a slight dark line on his lower lid but the doctor said that has nothing to do with the drug but more like dark circles. I shall take a note on that and observe it for a longer period of time. His previous water retention on the left ankle and eyes have subsided.

Thereafter, we went over to see his endocrinologist. Dad’s doctor was so pleased with his records and was amazed by his discipline in caring for his health by diligently exercising on daily basis, watching his intake of food and also checking his blood sugar and recording them without fail. By monitoring closely, he gets to understand how certain foods will affect his blood sugar and he will take steps to control himself. On that, I must salute my Dad. He is his own doctor as he wants to be well. That relieves me from worries. I am so proud of him.

My gratitude extends to his jovial and friendly Oncologist, Dr Mellor and wonderful Endocrinologist, Dr Chan for their attention and encouragement. Also to Max Foundation and Novartis for the patient assist program. Support from these people help a lot and let us deal with GIST more positively and giving us hope. We are tracking his progress from each visit to the doctors and so far, Thank God, my dad has been doing well. We shall keep monitoring and praying for his well-being.

Cheers!

~ Alice N.

Dad’s Health Journal

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I decide to create a new category in my blog, specially dedicated to a great man, my father. This shall be his health journal. I shall update his progress here, sharing with my wonderful readers, the journey dad would be taking in treating his condition.

Dad was a planter all his career life. He successfully managed rubber and oil palm plantation, from his first estate to the following, till he retired. His skills and knowledge are greatest assets to any planter. Till today, he still can remember very clearly the processes involving seeding to replanting to harvesting and so on.

Beginning of July 2014, out of the blue mom told me that dad has been losing appetite and weight ever since Father’s Day. She didn’t want to tell me much earlier for fear I’d be worried sick. Whenever I called them, they sounded their usual self. His blood sugar shot up too. His occasional nose bleeds, more like spotting I was told. Dad said he saw the local ENT but they couldn’t find anything wrong with the nose. Something was amiss but I didn’t know what. My gut feelings told me that he needs proper medical examination without any further delay.

The list of examinations started from 7/7/2014. Less than 2 weeks to his birthday. I was glad that dad managed to see Dr SP Chan of SJMC. Her calendar was full. I tried asking for an appointment but to no avail. I went into the medical centre online appointment and wrote the reasons for such urgency for this appointment to be on 7/7/2014. I was so relieved that someone from the calling centre called me on a Saturday evening to speak to me in response to that online submission.

Dr Chan discovered a few things from the blood test, x-Ray and ultrasound on the chest and liver. She immediately referred dad to a renowned gastroenterologist. Thank God, Dr Yin advised dad to see him early the next morning. Meanwhile, dad was put on insulin and change of Blood Pressure (BP) medicine. Ms Yong, a consultant at the diabetes care was so patient and kind. She briefed us about cause and effect of diabetes, then taught mom and dad on the use of insulin. This was something very foreign to us. Mom kept asking if he could do without the insulin. I consoled her that if he could, the good doctor would have prescribed it. Let us follow the doctor’s advice and act accordingly. I’m sure dad’s condition will become better under the care of Dr Chan.

The following morning, another blood test was called for. Dr Yin ordered for a CT Scan in next morning. In the meantime, we were all cheering dad on for the insulin and blood sugar self-tests. These things were new to him and being clumsy at them was only natural. I could see he painstakingly try to hide his anxiety and frustration from us. For all the medical exams that needed fasting, I fasted together with him. That was the most I could do to share his discomforts. I wished that I could cast them away and put things right again. But, that’s impossible. So instead, I shall pray to Almighty God for serenity, courage, strength and patience. I have to be strong for the family.

Following the CT Scan, dad had to returned for endoscope. I could feel mom and dad were getting more and restless and anxious by the day. I kept reminding him not worry about anything else except to take care of himself following doctors advice. We shall soldier on, one way or another. I am sure when there is a will, there is a way. At time like this, I am most grateful for my husband. He has been the pillar of strength throughout the whole process. He made mom and dad felt more relaxed with his constant assurance.

From the endoscope results, dad was referred to an Oncologist. As I was still concerned about dad’s nose bleed, Dr Yin referred us to an ENT specialist, Dr Puravi. Another wonderful doctor. He introduced neti pot to us. I read about the benefits of neti potting some years back. I was most glad to know more now.

Our meeting with Dr Matin, the Oncologist was another pleasant encounter. Again, thanking our stars and thank God for letting us meet all the wonderful doctors at time like this. Doctor indicated the condition as GISTs. The mass seen in the liver showed the spread of the tumours from the stomach. However, we had to wait for the IHC report for any treatment to be prescribed. Highly likely via a drug called Gleevec (or, Glivec) if the type of GISTs matches. Just yesterday, I went to see Dr Matin for the IHC report. It was confirmed GISTs and the type which can receive Gleevec. That was one good news, I guess. Hopefully, dad’s tumour would respond to the drug and tumours shrunk. We shall see the doctor again in a month’s time to check how he responds to the medication.

For now, we skip around the C word. We do not want to scare mom, if she hasn’t known as much. I need her to be her normal self. No point getting upset or being pessimistic about the whole issue. Dad needs more positive energy around him and I would very much like to keep it that way. You know, mind over body. Moreover, we have the medication and a good doctor with us. There is always hope.

To sum it all up, thank you SJMC and all those great doctors mentioned herein. Not to forget those hardworking support staffs who make all things bearable, with as simplest gesture as an understanding and consoling smile. Smiles were readily exchanged along the corridor, clinics, cashiers…..everywhere!

Thank you so very much!

~ Alice N.


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