I was officially diagnosed with Non-Hodgkin's Mediastinal Large B-cell Lymphoma in July 2010. I was seventeen. I was in Form 5; my last year of secondary school, preparing to sit for the SPM examinations.

I would consider myself an average teenager - a girl who just wanted to have fun, with her quirks; trying to survive life as a teen.

It all started with me coughing non-stop after a bout of the common flu. Despite making several trips to my family doctor's clinic, the cough just won't seem to go away even after months of being under medication. Several prescriptions of cough drops later, my family doctor suggested to my parents and I to have a chest X-ray done for me.

A large tumour was discovered; situated in between my lungs, right in front of my heart. The tumour was pressing against my trachea, causing me to have slight breathing difficulties and all that coughing.

I stopped going to school almost immediately. My parents and I went on this journey to seek advice from specialists regarding my condition.

Next, I had a needle biopsy done which confirmed that the tumour consisted of active cancer cells. I had to go for a surgical biopsy to classify what kind of cells were they, so the proper treatment could be administered right away.

The cancer had then spread to my pancreas, kidneys and liver.

Afterwards, I went through six cycles of chemotherapy(R-CHOP) and self-studied for the rest of the year. I was lucky that I was fit enough to sit for my SPM examinations at the end of the year right after my last chemotherapy session scheduled for me was completed. Or else, I wouldn't be able to successfully graduate from secondary school. I had a lot of people telling me to just skip the examinations and relax for a bit, but my stubbornness got the better of me. I was determined enough then and thankfully, I did alright. At least I could fully focus on getting myself treated without worrying that I did not complete even my most basic education in Malaysia.

At the end of 2010, I went for a PET scan. My tumour did shrink, but it was still there.

When 2011 came, I went for radiotherapy this time. I had 25 fractions done.

I thought I was on the road to recovery at long last, but unfortunately…no.

A few days before my scheduled PET scan, I felt extreme soreness at the right side of my abdomen. It made me lose sleep at night, and my coughing fit was back. The oncologist in charge of my treatment for radiotherapy felt something near my right kidney. I went for a PET scan the very next day, and found out that my cancer had spread again. New tumours surrounded both my kidneys once more and my lower spine. Radiotherapy was crossed out from the possible ways of treatment, since the radiation will damage my kidneys, affecting their function tremendously.

I had three more cycles of chemotherapy(R-ICE) done. This proved effective for awhile, but after every session - the cancer would get aggressive and we went back to square one. Finally, it was decided that I was to undergo an autologous stem cell transplant. I had my stem cells harvested, and I went through a few days of high-dose chemotherapy before the transplant. I was hospitalised for a month. I had zero immunity, and blood infections which caused high fever haunted me. I made more trips back to the hospital to rid of the infections.

I am currently under quarantine and recuperating from the transplant; dealing with the side effects from both the transplant and my radiotherapy sessions - causing breathing problems, dizziness, fatigue, etc. The latter is the cause of a now weak heart.

I went for another 27 fractions of radiotherapy due to a tumour above my left kidney discovered by a PET scan in December 2011. My left kidney has lost its function.

Through another bout of coughing, I was advised to go for a chest X-ray and have an ultrasound done at the abdominal area. It is confirmed that my cancer relapsed for the third time. I am now under a new kind of medication.

***
So much had happened throughout me battling cancer.

Other than the physical challenges I have to go through, I also have to deal with my decreasing level of self-esteem and emotional health.

I do admit, I am a typical girl when it comes to me wanting to look pretty. You may call it vanity, but I say it's just me wanting to look presentable and good.

Imagine, I went bald twice; not once, but twice! Surprisingly, no tears came! (I later realised that it’s the process of waiting for my hair to grow again that’s truly challenging.)

This time, I hope I can truly make a full recovery and do my bit for the community. Also, hopefully my cancer journey as a teenager managed to inspire you and give you a more positive outlook on life. Quite a number of us assume that cancer only affects adults. On the contrary, I am a living example that that mindset is certainly untrue. It's not for me to tell you how to live your life, but you only live once, so treasure your life and your loved ones while you still can. Stop and smell the roses once in awhile, and you'll find that life is so fulfilling with just happiness and good health. A successful career, good grades - definite bonuses and great goals, but with life being so unpredictable; you'll never know what might happen next. Be content with what you already have, count your blessings and live life to the fullest without any regrets.

Believe me, I'm speaking from personal experience.

***
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If there's something we should stop doing, we should really stop judging people from their looks and looks alone.

In my humble opinion, we don't really have the rights to judge someone and assume how they usually act and behave from just a simple glance or even after staring at them for so long, thinking you'd already understand how that person is like just by judging on someone's appearance.

As a cancer patient, I can relate to the treatment cancer patients are given. Basically, cancer patients undergo chemotherapy and/or radiotherapy to kill the cancerous cells in our bodies. At the same time, other body cells that are not harmful are also killed. Depending on each patient's mental, emotional and physical health, treatment can either be painful, tormenting, tedious, stressful, tiring and a whole lot more.

I know chemotherapy makes my white blood cell count drop. It causes me to have nearly zero immunity to germs, bacteria and viruses. I can fall sick very easily if I'm not careful. Hence, me wearing a surgical mask whenever I'm out. And going out is rare and uncommon for me nowadays unless completely necessary. My parents really don't want to expose me to any potential harm in the outside world. I understand their good intentions, but trust me. Staying in the house all the time, I'm this near to insanity.

Okay, I was just exaggerating. I just get very restless, that's all.

Now, to the main issue of the day.

I have to agree when it's said that society in general judge people who are wearing surgical masks in a negative light. People tend to assume that we are bearing some kind of highly contagious and deadly disease. Besides that, there are also people who tend to stare at us just because of the fact that we are wearing a surgical mask. I'm not sure about other countries, but here in Malaysia, if one has a flu or is coughing quite badly, wearing a surgical mask is considered troublesome, uncomfortable or/and unnecessary. In fact, nobody really wears it. Those who are sick normally just take the day off from school or from work.

There was one time when I went out for a quick dinner with my parents and my brother. Of course, I had to wear a surgical mask. The moment I stepped out from the car, I received stares from nearly everybody who saw me. Some of them tend to look at me for so long, I got really uncomfortable and I was starting to get self-conscious. I even overheard a few of them saying things like,


Talk about being judgemental and making unfair assumptions. It was only too obvious that they have little knowledge regarding health issues.

Readers, if I had H1N1, I would have been given strict instructions to be kept quarantined.

If I have AIDS or HIV, I can't transmit the disease to you unless I had sexual intercourse with you. Neither I can do so if I did not share needles with you. It can only spread to another individual through infected body fluids from the inside of an infected person to the inside of another person. If you can't figure out how, go and find out. There are so many sources to which one can find out how AIDS or HIV spreads.

I understand that it could be just a normal reaction from people to quickly avoid someone who is wearing a surgical mask, because they don't want to risk getting infected and fall sick. But like I said, these people have no rights to judge and assume if they don't know what is really going on.

In the end, I figured out the best solution to avoid all these uncomfortable stares.

Stare back. They tend to shy away knowing that they got caught staring, which is actually very rude. Haven't you been told that it is actually rude to stare?

This is why I do not stare at random people when I go out to face the world. I know how much I don't like it, and if I want to be treated the same, I shouldn't be doing it in the first place.

To conclude, just a friendly note to all my readers. It is rude to stare at people, and people wear surgical masks for good reasons. If you don't know, don't assume.

Cheers!

Labels: lymphoma and me, medical procedures, musings

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Shin.1966 - 2009. "She lives forever in the hearts of those who knew her, and know of her."
I watched a documentary about her battle against cancer on Mediacorp's Channel 8 in 2008, back when I was still fifteen. I was really touched by her strong will and constant optimism despite her condition.

I found her blog and sent her an e-mail, expressing how wowed I am by her. All I wanted then was to tell her to keep up the good fight, and she was doing at good job at it; I learnt a lot about life in that one night through her documentary and blog entries than in my fifteen years of living life - complaining and whining when I was actually one lucky brat. I honestly didn't expect her to reply.

Guess what? She did.

I would like to share her reply to me with all of my readers. It also works as a reminder to me that I should keep up the good fight as well. I hope she doesn't mind, but I personally don't think she will; bless her good soul.

11th November 2008.

Leonie,

Thanks for your kind e-mail. It's taken me a while to respond because I only just saw it. I look at my Gmail account once every week or so. This Yahoo account is more reliable if you want to contact me.

I truly appreciate your words of praise and encouragement.

You say that you're a 15-year-old Malaysian student and that you're not good with words? You should know that your short note was more articulate, well-written, and intelligently expressed than most of the comments I've been getting - many of them, adult professionals.

I don't know what you plan on doing with your future, but with your gift of expression, I think you've got a bright future ahead of you, professionally. And more important, you seem to have a maturity and insight beyond your age. I'm betting that you go on do something great with your life - not in terms of money or fame, but something that will make a difference to the people and the community around you.

Thanks, and good luck to you.

Shin

*** Shin had really good foresight. Even if I personally don't think so, I guess my friends, acquaintances, and strangers who have got to know of my cancer journey will agree that I did manage to 'make a difference to the people and the community around me.'

Rest in peace, Shin. My only regret then was that I didn't get to reply your e-mail in time. Cancer took you away not long after, and this will always bug my conscience for being such a procrastinator.

But you have enlightened me in so many ways, and you continue to live in my heart as my inspiration to keep up the good fight.

Keep up the good fight. That should work well as a personal motto.

To my readers who want to know more of this amazing person, do visit her blog at http://shinscancerblog.blogspot.com and watch the documentary I watched by clicking on this link.

Thank you Shin. Thank you for making such a difference to my life.

©Photo of Shin belongs to her family members.

Click hereto go back to reading.

If there's something we should stop doing, we should really stop judging people from their looks and looks alone.

In my humble opinion, we don't really have the rights to judge someone and assume how they usually act and behave from just a simple glance or even after staring at them for so long, thinking you'd already understand how that person is like just by judging on someone's appearance.

As a cancer patient, I can relate to the treatment cancer patients are given. Basically, cancer patients undergo chemotherapy and/or radiotherapy to kill the cancerous cells in our bodies. At the same time, other body cells that are not harmful are also killed. Depending on each patient's mental, emotional and physical health, treatment can either be painful, tormenting, tedious, stressful, tiring and a whole lot more.

I know chemotherapy makes my white blood cell count drop. It causes me to have nearly zero immunity to germs, bacteria and viruses. I can fall sick very easily if I'm not careful. Hence, me wearing a surgical mask whenever I'm out. And going out is rare and uncommon for me nowadays unless completely necessary. My parents really don't want to expose me to any potential harm in the outside world. I understand their good intentions, but trust me. Staying in the house all the time, I'm this near to insanity.

Okay, I was just exaggerating. I just get very restless, that's all.

Now, to the main issue of the day.

I have to agree when it's said that society in general judge people who are wearing surgical masks in a negative light. People tend to assume that we are bearing some kind of highly contagious and deadly disease. Besides that, there are also people who tend to stare at us just because of the fact that we are wearing a surgical mask. I'm not sure about other countries, but here in Malaysia, if one has a flu or is coughing quite badly, wearing a surgical mask is considered troublesome, uncomfortable or/and unnecessary. In fact, nobody really wears it. Those who are sick normally just take the day off from school or from work.

There was one time when I went out for a quick dinner with my parents and my brother. Of course, I had to wear a surgical mask. The moment I stepped out from the car, I received stares from nearly everybody who saw me. Some of them tend to look at me for so long, I got really uncomfortable and I was starting to get self-conscious. I even overheard a few of them saying things like,


Talk about being judgemental and making unfair assumptions. It was only too obvious that they have little knowledge regarding health issues.

Readers, if I had H1N1, I would have been given strict instructions to be kept quarantined.

If I have AIDS or HIV, I can't transmit the disease to you unless I had sexual intercourse with you. Neither I can do so if I did not share needles with you. It can only spread to another individual through infected body fluids from the inside of an infected person to the inside of another person. If you can't figure out how, go and find out. There are so many sources to which one can find out how AIDS or HIV spreads.

I understand that it could be just a normal reaction from people to quickly avoid someone who is wearing a surgical mask, because they don't want to risk getting infected and fall sick. But like I said, these people have no rights to judge and assume if they don't know what is really going on.

In the end, I figured out the best solution to avoid all these uncomfortable stares.

Stare back. They tend to shy away knowing that they got caught staring, which is actually very rude. Haven't you been told that it is actually rude to stare?

This is why I do not stare at random people when I go out to face the world. I know how much I don't like it, and if I want to be treated the same, I shouldn't be doing it in the first place.

To conclude, just a friendly note to all my readers. It is rude to stare at people, and people wear surgical masks for good reasons. If you don't know, don't assume.

Cheers!

Labels: lymphoma and me, medical procedures, musings

5 comment(s):

Post a Comment