Recently I met Nithiyaa, a thriving Hodgkin Lymphoma survivor. The minute we sat down for her interview, I was instantly captivated by her sunny personality, and infectious positivity towards life. From cancer survivor to fun runner in the First Blue Cap Relay Run For Prostate Cancer to strutting the runway for the Kuala Lumpur Indie Fashion Week (KLIFW) 2016 – Nithiyaa spells out this energy that anything is possible and nothing can hold us back! Here’s the interview I would like to share with you.
Q: When did you find out you had cancer?
A: In December 2012, I had trouble breathing and so my sister and my husband (my boyfriend back than) immediately rushed me to Putrajaya Hospital. I remember clearly, at that time, my thoughts were running wild, and I kept thinking could it be an asthma attack? Since asthma was a history in my family, it was the only possibility I could think of. When we finally reached the hospital, the doctors had the nebulizers placed on me, and I was urged to get an x-ray.
Q: Tell us about your x-ray results?
A: My x-ray results revealed a huge mass growing between my lungs, close to the area of my heart, and because the mass was pushing through, the right side of my lungs collapsed, causing great difficulty for me to breathe. However, things happened all too quickly at the hospital and in the next minute or so, the doctors were inquiring, if my family had any history of cancer. They also disclosed the x-ray results to my sister, who was a medical student at that time, and they were discussing my condition, and so my sister discerned my condition was pretty serious and needed instant attention.
Q: What happened after that?
A: Following my x-ray results, the doctors wanted to be 100 percent sure, and so, I was pressed to get a CT scan and biopsy for confirmation of my condition. At that time, I was admitted at Putrajaya Hospital, but unfortunately their CT scan was not functioning properly, and so my family took me to a nearby, private hospital, to get the CT scan. Later in that day, I was readmitted to Putrajaya Hospital, where a nurse shared the CT scan results confirming that I have Hodgkin Lymphoma. And I had to take a biopsy for further validation.
Q: How did you and your family take the news?
A: I was very disturbed and shocked. As you can imagine, the news came in very sudden. Worse still, it happened on the same week I was supposed to attend my husband’s best friend’s wedding, in Penang – so it was a bit overwhelming. That night at the hospital, I had a mix of emotions, and my husband who was accompanying me at that time kept encouraging me and we decided that we will get through this no matter what. How did your loved ones react when they first heard the news?
On the other hand, my parents never showed any emotion. But later on, after all the treatments were over, my mom did admit that it was tough for her and my dad at first and it was not easy for them to accept or even digest the news. But they tried hard not to display any emotion. My sister, took it very hard initially, while my friends stayed positive. On the whole I can only say their support and encouragement meant a lot and helped me a great deal through my cancer journey.
Q: How did your treatments go?
A: The doctors at Putrajaya Hospital had me referred to Ampang Hospital because the haematologist centre among government in Kuala Lumpur was located there. At the time when all these happen, I was actually in my final year at university and had a very important exam to sit for and so I attended my exam first and later that took some time off and got myself readmitted. This happened before the end of December 2012, when I begin my first chemo treatments. My chemo treatments lasted for 6 months, ending in May 2013. Following that, I had to go for my (PET) scans which included 2 sessions and this ended in January of 2014.
Sadly, my cancer came back again. So in February 2014, I was readmitted at Ampang Hospital, where I had to undergo a second round of chemotherapy and bone marrow transplant.
For the second time around, my chemo experience was unpleasant as the treatments were quite severe with 3 sessions of very strong chemo treatments that kept me in dire exhaustion and lack of energy. I had to go for 3 day sessions of chemo, once in every three weeks, followed by the transplant after that, so all in all the treatment took up 3 months, ending in June 2014.
During this time, it was really hard for me as I was confined to my room and was not allowed to venture outdoors. The only companion I had was my daily newspapers (which my mom helped purchase for me) and my phone.
A month after that, I underwent radiotherapy at the Institut Kanser Negara, and this took place somewhere in September 2014.
Q: How has things change for you after having cancer?
A: Having cancer has certainly made me appreciate life a lot, for the most part, the small things that we take for granted. It has also helped me developed a great sense of appreciation for my family, husband and friends who have been constantly at my side all throughout my journey with cancer.
The one thing I can agree on is that, while cancer brought a lot of pain, it also brought me joy. On the bright side, after my treatment, I went on to complete the last two semesters of my studies and got a job. In addition, my husband and I got married after 9 years of being together. Also, if I can add, I used have a short-temper but due to cancer, I often got very tired and too weary of arguing that my temper slowly faded-off, which is a good thing. I also used to have terrible eczema, but after cancer, that too left me completely.
Besides, I was fortunate to have the amazing opportunity to participate in the Kuala Lumpur Indie Fashion Week (KLIFW) 2016, entered a fun run last year for the Blue Cap Relay Run for Prostate Cancer, and I get to enjoy interview opportunities like these every now and then and especially having the privilege of bonding with many other cancer survivors – so that has been truly remarkable. As you know, every cancer survivor’s journey is very unique and different.
Q: What was your treatment costs like?
A: If you go to a private hospital, the treatment is going to cost you a great deal. So it is important to be covered with an insurance. I was lucky that my cancer treatments were not a huge concern for me, firstly as I was admitted to the government hospital, and secondly the insurance at my workplace had me covered – so financially I was at ease.
As most of my treatments were covered by my company’s insurance, so I don’t really know the actual amount of my treatments. But approximately I can say that my chemo sessions cost me RM100 for the first time around and the second time around – when my cancer returned, the treatment cost RM100 to RM200 for each treatment. Then there was the hospital stays and medication. However, thankfully it was all covered by the insurance. The only cancer treatments I had to pay for was for my (PET) scans which cost me about RM500 each time and I had to do 3 scans in total.
Therefore, having solid financial support in case of cancer is definitely important, as it can really help shoulder one major burden. I was simply very fortunate that my workplace had me covered and so I had nothing to worry about financially, otherwise it would have added additional stress, more so as I did not have my own personal insurance. But after my cancer experience, my family got insurance.
To know more about cancer treatment costs – read here.
Q: So tell us during your cancer journey, were there any main concerns you had for yourself or for your family?
A: I was certainly worried of how the family was going to take it. I was also worried about completing my degree. After SPM I worked for 3 years and only after that continued my degree, so finishing my degree was a huge concern for me.
What is Hodgkin Lymphoma? Get to know this cancer that eats up your lymphatic system, which is also a major part of your immune system
Image source: www.merckmanuals.com
About Hodgkin Lymphoma
Hodgkin Lymphoma also known as Hodgkins disease is a type of lymphoma, a cancer that develops in the lymphatic system which is part of our immune system. The lymphatic system contains clear fluids called lymph which flows through the lymphatic vessels and contains infection-fighting white blood cells, known as lymphocytes.
Hodgkin lymphoma develops when the B-lymphocytes (a particular type of lymphocyte) starts to multiply in an abnormal way and begin to collect in certain parts of the lymphatic system, such as the lymph nodes (glands). The affected white blood cells or lymphocytes loses their infection-fighting properties, which makes it lymphatic system more vulnerable to infection.
Typical symptoms of Hodgkin lymphoma is a painless swelling in the lymph node, usually in the neck, armpit or groin.
Lymphomas are divided into two categories: Hodgkin’s Disease (HD) and Non-Hodgkin’s Lymphoma (NHL). Generally NHL is more common than HD. Worldwide, the incidence is reported to be increasing either due to earlier detection or an absolute rise in incidence.
The risk factors for lymphoma is not known. However, those who have been previously exposed to radiation, any immune diseases have a higher chance of developing Hodgkin Lymphoma.
Typical symptoms to look out for
- Enlarged and palpable lymph nodes, commonly in the neck, armpit and groin.
- Weight loss
- Loss of appetite.
- Difficulty in breathing
Can this disease be prevented?
Lymphoma is not genetics and generally there is no certain way to preventing this type pf cancer has the cause is unknown. However, according consultant haematologist Datuk Dr Vijaya Sangkar Jaganathan, some precautions can be taken including;
- Do a full assessment so you can have a clear and overall understanding of your disease.
- Giving full participation in your therapy.
- Avoiding consumption of antioxidants during chemotherapy
- Avoiding consumption of herbal or any other traditional supplements
- Drink a lot water.
- Eat healthy and home cooked food.
- Avoiding crowded areas to reduce risk of infection
Hodgkin lymphoma can develop at any age, but it mostly affects young adults in their early 20s and older adults over the age of 70. Slightly more men than women are affected.
According to the Star, the National Cancer Registry 2007 reported in Malaysia, lymphoma is the sixth most common cancer among Malaysians and the sixth most common cancer in males, whereas in females, it is the eighth most common cancer.
Hodgkin Lymphoma is quite an aggressive cancer and spread very quickly. Treatment will usually depend on the health and person’s age. Reason being cancer treatments can put a huge stress on the human body. Typical treatment include chemotherapy and radiotherapy.
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