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I am a mother of four, and I have Stage 4 cancer. It is incurable. But no matter what many others may believe, I firmly believe having advanced cancer is not a life sentence.

It has been a year since I discovered I had bone metastases, which means the cancer has spread to my bones. I was diagnosed with early-stage breast cancer in November 2016, but this metastases discovery automatically upgraded my status to a Stage 4 cancer patient.

What’s it like being a Stage 4 cancer patient?

I know what people think about Stage 4 cancers, and that they think that’s the end of the road for patients like me. But regardless of the time I have left, I must fight. I have four children who still need me every day, and every hour I have with them is so precious.

And there are others like me. We want to live. I want to see my kids grow up and graduate. We want to do so much, and we are up for anything, but there seems to be something always stopping us from trying to prolong our lives.

The sad truth is that despite having to fight this disease, patients have to struggle with an incredibly tough system. When patients are refused treatments or must go through too much red-tape to get treatments, their survival is then hampered. Their lives slowly dwindle.

Let’s talk about time

To date, Stage 4 cancers are incurable. Thus, the objective of treatment is shifted from curing the disease to giving patients quality of life, and to prolong life as much as possible. These treatments can be in many forms, such as surgery, chemotherapy, radiotherapy, targeted therapy, immunotherapy or a combination of any of the treatments.

Do not disregard the significance of these treatments. Based on medical reports, the median life of a Stage 4 cancer patient is two years. But I have sat down at the same table with advanced breast cancer patients who have survived more than 8 years! I know of some who have lived 15 years.

These are the same people who were told by the doctors in government hospitals years ago to just go home and pray. That there is nothing they can do for them. Can you imagine what that must feel like?

The truth is that they can do something for these patients, but when it comes to costs, they favour early-stage cancer patients who have a chance at recovery. When patients are refused treatments because their cancer is incurable, what happens then?

Patients who can self-fund, or have insurance, may proceed to get treatments at private hospitals, but what about those who are unable to afford this? Not all cases referred to public hospitals are a lost cause, as proven by those who have survived.

At a breast cancer event organised by the Breast Cancer Welfare Association.

Improving a system

Some patients also face extra charges from public hospitals if they had first received treatments at private hospitals due to the urgency of their situation. Perhaps they have exhausted all their funds, or initially received treatment or an initial investigation at private hospitals.

Why should patients be charged more just because they initially went to a private doctor? I feel this is thoroughly unjustified. There are many reasons why some patients opt for private institutions at first. It could be the long queue to get the first appointment, but the condition has worsened. Or the patient initially had insurance which has now ceased coverage. It could even be a general medical check-up that turned out to be cancer. We just want to be treated fairly.

As earlier stated, I was initially diagnosed with early-stage breast cancer. The truth was, I actually have a rare cancer known as neuroendocrine carcinoma. It just so happens to be in the breast, and so it was misdiagnosed as breast cancer.

If it was not for my nature of wanting to read and research every single medical term in my histopathology report, I would not have known the rareness of my cancer. I would not have known how aggressive it was. Most of all, I would not have known if I was getting the right treatment.

After enquiring about this cancer, I found out there are no specialists in Malaysia for this cancer. As there are very few cases around the world, there has not been a consensus on the right treatment method.

The event that inspired me as a Stage 4 cancer patient.

Can you imagine my horror?

I went into fight-or-flight mode. I had to self-advocate, and I reached out to the right people across the globe. I’m glad I did what I did. I managed to get in touch with one Neuroendocrine Tumour (NET) guru, one NET specialist and a NET nurse who are all advocates for the NET community. Through this community, I met less than a handful of cancer patients around the world with the same diagnosis as me.

I learned that although there is no one treatment for all patients of this cancer, there are first line, second line, third line treatments that have been used and which may work. With this knowledge, I discussed with my local oncologist and decided on a procedure that will hopefully suit me.

Being hopeful’s real costs

Yes, I have Stage 4 cancer, but I always have hope in my life. Every day I hope to hear positive improvements in our national health system. I always hope for the discovery of new cancer drugs that can somehow spark a miracle.

Understand that I am hopeful for a reason. It was just announced, for example, that the generic drug for Herceptin, a very effective medication to prolong life for Her2-positive breast cancer, was approved in Malaysia. Yay!

This is good news for Her2+ breast cancer patients, as they would otherwise need to fork up a whopping RM8,000 to RM10,000 per vial of Herceptin.

For the early stages of this breast cancer, patients would undergo between 16 to 18 cycles of treatments which would cost them around RM150,000! For advanced breast cancer patients, they need to undergo these treatments for as long as they have the funds in order to live. Although the price of the generic drug has yet to be revealed, it will certainly reduce the cost by some, and give more hope to patients.

This important co-relation between costs and the time left means patients like me need to do more than just sit back and wait for fate to take its course. It’s crucial for patients to know what they can do, and for others out there to treat us like we are still very much present and living.

These ladies keep me sane, and treat me normal!

My journey

I have been through a lot, and I have seen many different ways people react to the diagnosis of cancer. There are three phases. The first will be grief. Most, if not all, will find it hard to accept at first. Cry if you must. The next phase is getting back on their feet and facing the disease. This is acceptance – when a patient has learned to accept their situation, they can be positive while going through treatment. The third phase is redha and tawakkal, having faith in the Almighty.

What do I feel about things now? I have faith in the Almighty about my situation. Nevertheless, it does not mean I am throwing in the towel. I believe I must do all that I can.

World Cancer Day

On this World Cancer Day, I want to say thank you to the caregivers of cancer patients. You, who have stayed by the side of your loved ones, helping them through this dreaded disease. You make things better for us, and we thank you for being our backbone.

But caregivers, we know how strong you must be to support us emotionally, physically and mentally. Sometimes you fall, and you are not so strong. Please think about yourselves too, we want that for you. Take a break for yourselves. Refresh yourselves and feel good. My mother sacrificed everything for me and almost cancelled a trip to Japan because of me – I couldn’t accept that.

I salute every cancer patient who strives to fight cancer and live just like any ordinary person. My heart and prayers go out to all who have succumbed to it.

My family and support system.

To those who may not know what to say or do when faced with a cancer patient like me, I’d say this:

We don’t want to be treated any different. Just listen when you can. You don’t need to respond with advice or tips, trust me, we hear enough from our doctors and caregivers. Just listen. Help us fight. We still want to live life and enjoy ourselves.

I still work, I need to work. I am a parent, and although I want to be the mother who is all loving and tender with her kids, I still find myself nagging them! But that’s the parenthood journey, it’s not all glory. Learn from everything and reflect on everything. I am still learning.

What does a day mean for me now?

Everything I was planning to do with the children in a few years, I want to do now. If I live long enough, then let us do those things again. But for now, I want to let them experience things while I’m around, and to create memories with them.

I just want to create memories with the kids.

One more day means one more chance to enjoy the company of my loved ones. I wish I didn’t have to feel the pain, which is the first thing I feel every day. But I take my medicine and then I’m good for the day.

I want to value everything now. If there’s something I have learned through everything, it is to not give up easily and to always look at the better and brighter side of life.

By Hasnita Rosli

Hasnita is a Systems Applications and Products consultant and a computer programmer for the past 18 years. She’s also a momager to her 4 children, who are sometimes busier than she is. When she gets some ‘me time,’ she enjoys the spa and loves the hunt for good food.

All photos are from Hasnita’s personal collection.

 

Runny noses and disturbed sleep. Tummy bugs and fevers.

Any parent knows how awful it is when their child falls sick. It is even more distressing when children catch illnesses that are more serious, such as the Hand, Foot and Mouth disease  (HFMD), which saw an increase in Malaysia this year.  But other than making sure you teach your child hygienic practices like proper hand washing, how else can you boost your children’s defences as best as you can?

While it is virtually impossible to germproof your child, here are 8 ways to improve your child’s immune system to help prevent those colds, flus and illnesses.

1. Eat a Rainbow

Encourage your children to  eat as colourful as possible, and we don’t obviously don’t mean a rainbow cake!

The more colourful fruit and vegetables they eat, the more wide variety of different vitamins and minerals they are getting. Red, yellow and orange hues are particularly rich in Vitamin C and carotenoids. These phytonutrients are not only antioxidants, they enhance immune response and help the body create more white blood cells which help us fight infections.

You can help them with their rainbow diet by offering smoothies, healthy fruits as snacks or by incorporating them into their main meals in fun and yummy ways! (Baked and crinkley sweet potato fries, anyone?)

2. The Power of Yoghurt!

Maintaining a healthy gut is also important for children as these gut bacteria protect their digestive tract and help control their immune system. It determines whether or not your child fights off a cold virus, so it is a good idea to boost their health gut bacteria!

You can help your children do this by giving them some probiotics – and this can be easily done with the live and active cultures in good old yoghurt. However, opt for plain or Greek yoghurt rather than picking the sugar-laden ones typically marketed at kids – you can add sweetness with honey and fruit.

3. Don’t Give Unnecessary Antibiotics

Yes, antibiotics can be lifesaving, but taking too much antibiotics can mean getting rid of your child’s bad and good bacteria. This relates to the second point above, keeping their gut health healthy.  Researchers are finding that when we mess with our body’s good bacteria, it can increase our risk for chronic illness.

Recent studies show overuse of antibiotics can also impact your children’s long-term health, so it is important for parents and doctors to reserve antibiotics use only for illnesses that require their use.

4.  To Bed, To Bed

We are now aware of the huge importance sleep is to adults, but this is doubly so for children! Boost your children’s sleep time, because sleep deprivation can make them more susceptible to illness. A lack of sleep will suppress their immune system function, and decrease their body’s ability to fight colds or bacterial infections.

How much sleep does your child need? The Sleep Council says that while there are no hard and fast rules, the general guide is that toddlers need around 12 hours of sleep a night, and children aged three to six need 10 – 12 hours. Seven to 12-year-olds need 10 to 11 hours, and teenagers need around 8 – 9 hours.

5. Cut the Sugar

We know that children love sweets, but sugar has been described as a toxin by health experts. The American Journal of Clinical Nutrition also reports evidence suggesting that sugar lowers phagocytic activity, and phagocytes are cells that protect us by absorbing bacteria and other foreign substances.

So try to only reserve sugary snacks as rare treats at birthday parties, and try to introduce healthier snacks such as fruit, frozen yoghurts or popcorn.

6. Eat more Oily Fish

Many a good thing has been said about Omega-3 fatty acids and the health benefits found in oily fish such as salmon, tuna and mackerel. Tucking into these oily fish not only boosts brain development, the high levels of essential fatty acids have also been found to help improve immunity in children.

Your child not a fan of fish? Try making yummy fish pies or fish croquettes which can be a real hit with kids!

7. Keep Stress and Smoke Away

Stress can impact your child’s immunity, so make sure you take time to include quiet, relaxation or mindfulness in your child’s life. Love, laughter and lots of hugs and cuddles can also enhance feelings of positivity and security, so feel free to be generous with these!

Keep cigarettes and smoke away from children,  research has shown that smoke affects their immune systems and can result in them getting more frequent infections.

8. Aid With Supplements

Supplements are great to complement your child’s routine and diet. When your child’s immune system is a bit run down and they seem to always fall sick, there are a variety of supplements that can support the immune system well.  Besides yoghurts and fish oils previously mentioned,  there are also zinc, vitamin C and vitamin D supplements.

Parents can also try Chewies Immunolicious, a great tasting gummy for children ages two and up that will feel more like a treat. Each gummy comes loaded with 50mg of Wellmune®, a natural yeast beta glucan that can trigger human immune defences to protect the body. Wellmune® is clinically-proven to safely enhance the immune system and kills foreign intruders without stimulating immune system, immune boosters or stimulators by activating innate immune body cells.

Kids only need to take 2 a day to keep health threats away, but with a soft, chewy texture and three yummy flavours – Orange, Mango and Strawberry -this is likely to go down well!

 

Available at Guardian, Watsons, Caring, Vitacare, Aeon Wellness and all participating pharmacies. More information, head to the Chewies Facebook page here.

 

This is a sponsored post presented by Chewies.

Your little boy or girl seems to be a happy child. He or she is healthy, growing well and doing all the right things children usually do. So, you take a back seat and enjoy watching them grow at their own pace.

But what if your child is not growing at the rate he or she should be for his or her age?

A Wake Up Call

The Malaysian Paediatric Association (MPA) is becoming increasingly concerned that many Malaysian children, from all family backgrounds, are experiencing growth problems.

MPA President, Associate Prof Dr. Muhammad Yazid Jalaludin said there are some sobering facts about children under five-years-old. The data from the National Health and Morbidity Survey should serve as a wake up call for parents.

“The prevalence of stunting (low height-for-age) increased from 17 per cent in 2006 to 20.7 per cent in 2016. That’s about two in 10 children. Meanwhile, underweight children increased from 12.9 per cent in 2006 to 13.7 per cent in 2016,” Dr. Muhammad said.

Kids from all backgrounds are affected

Such growth problems can develop in poor as well as affluent families. Unfortunately, parents often miss the signs of sluggish growth. They realise only later that their children have failed to achieve their potential. “They may have also become at risk of associated health, developmental and psycho-social issues,” he said.

According to Dr. Muhammad, many factors contribute to growth problems. Among the more prominent factors are children with feeding difficulties and inadequate nutrition (due to poor diet quality). Frequent illness at a young age, underlying chronic disease and certain developmental disorders are also contributing factors.

“Without intervention, these children risk developing long-term health, cognitive and psycho-social issues,” he said.

Doctors to the rescue

Keeping all these factors in mind, the MPA introduced its first concerted childhood growth screening and counselling campaign. They called it the IMFeD Malaysia – ‘Get Growth On Track’ Campaign, in collaboration with Abbott Malaysia.

Through the programme, paediatricians across the nation will evaluate children’s growth by examining their weight and height. This will then be compared to a growth chart.

IMFeD Malaysia chairman Professor Dr Lee Way Seah said the next five years (2018 – 2023) will see the scope expand to include screening and intervention for feeding and nutrition issues.

This is a timely development in light of data that has revealed an alarming prevalence of poor growth in Malaysia.

“It is an alarming situation but the MPA hopes to make a difference.,” said Prof. Lee. Currently, it has deployed the IMFeD expert panel to train over 150 paediatricians all over the country to detect and manage growth problems.

“The expert panel has also produced educational materials containing vital information and tips for parents,” he said.

Parents, early intervention matters 

Get professional advice so your child can feed well and grow well.

Prof. Lee said parents who are concerned about their children’s growth rate or who want to learn more about this programme should take advantage of it.

Parents can talk to the doctors from participating paediatric clinics about their children’s growth. The doctors would be able to investigate the reasons behind a child’s sub-optimal growth. They can then offer strategies and methods to boost the child’s growth.

If the child has inadequate nutritional intake and where appropriate, the doctor may recommend a complete nutritional supplement. This will help the child catch up and stay on course for optimal growth. There is a limited window of time to correct poor growth and get children back on their potential growth trajectory.

“It is very important that everything is done to help the child catch up to their optimal growth as soon as possible,” said Prof. Lee.

It is also important to continue seeing your doctor regularly to monitor the child’s growth. The doctor would be able to plot the child’s weight and height on the growth chart. Then they will advise parents accordingly if they notice a lag or decline in the child’s growth.

Parents who wish to find out more about the ‘Get Growth On Track’ campaign or locate a paediatrician may contact the IMFeD Malaysia programme secretariat at [email protected]. Telephone: 012-284 1628 or 012-772 1628.