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.
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.
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.
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.
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.
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.