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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I had enough.

To those of you who continuously ask me whether I'm okay or not, and seem to not believe me when I say I'm okay when I really mean it - here's some good news for you.

I'm not okay. Not at all. Not one bit.

Impatience and unbalanced hormones are both making my life miserable since radiotherapy ended.

Complete recovery from lymphoma seems unachievable.

Yes yes, call me a pessimist all you want. You think it's that simple?

You try having cancer when you're a teen who is stepping into adulthood, just wanting to have the time of your life with your family and friends.

Instead, you're isolated from civilisation and society itself. Why? The lack of white blood cells and your immune system being weaker than before. Your body cannot cope with the everyday germ, bacteria, or virus. Being infected can cause the cancer cells to massively spread to the rest of your body, namely your important internal organs. You can die just because of what is thought of as a minor flu among you normal and healthy people.

Hello! I didn't ask for cancer to happen to me. Especially not at this point of life when I'm turning 18 this year, and I was diagnosed in July last year! Just a few months more, and it would have been a year since lymphoma turned up unnecessarily in my life.

I tried to stay positive. I tried to be happy. I put a smile on my face whenever possible, I write cheerier entries on my blog, I avoid going online when I feel depressed and frustrated because I don't want to spread my unhappiness to others. I don't want to worry the people who care for me. I don't want them to feel sad or useless because they can't help lessen my pain. They can't help my cancer to just vanish into thin air and make me healthy again.

I'm sick and tired of all this waiting.

I have to wait for another agonising three months before I can go for another PET scan. I will only find out whether radiotherapy has worked its wonderful magic on me and make me cancer-free in three months' time.

Honestly, who doesn't hope for a complete recovery then?

But seriously, I no longer have high hopes for my next scan.

I had expected a complete recovery after six sessions of chemotherapy last year when I went for my first PET scan in December. Why? My doctor told me so. He said I have a high chance of complete recovery since throughout the last six months, my progress has been astoundingly great!

I made plans. Plans to finally spend time with my friends from school. Plans to go up to KL to meet up with two great people I have known online. Plans to find a job and lessen the burden of my parents who have been spending so much on my treatment. Plans to learn driving and be more independent. Plans to be a better daughter, plans to be a more responsible person.

All shattered in a matter of seconds, when the radiotherapist told me the tumour is still there, and I need to undergo further treatment.

The only good news? The tumour is smaller than before.

Fine, that's great. But to me, it's nearly like a "So what?" moment. I still have cancer. That tumour is still haunting me everyday.

I don't want to harbour high hopes on anything anymore, if it's going to result in broken dreams and a broken-hearted me.

Cancer has caused me to have this large gap between my friends in school and me. I feel like I missed out on countless conversations and fun times. I feel left out and forgotten.

Friends and friendships mean a lot to me. I'm a person who treasure friendships a lot.

No matter how much my mum tells me that friends, no matter how close they are to you now, will never stay your friends for life - I still hope that my friends can stay as friends. I hate arguments and misunderstandings between my friends and me. It really hurts me when something bad happens. Something that can cause the loss of a friend. It doesn't matter who is in the fault - whenever things go wrong, it just sucks.

I can cry on and off throughout the day, everyday. Till the problem is actually solved. To me, the possibility of losing a friend, or having a friend betray your trust - the pain is even more than falling out of love or having to deal with a breakup. I don't get romantic love at all, I'm more of a friendship love kind of girl.

I understand how all of them are busy with their own lives, with their own set of problems to solve. I understand. I really do.

It upsets me time and time again that when my friends are having problems, I can't be there for them. I cannot offer them a shoulder to cry or lean on. I cannot offer them a listening ear. I cannot give them a hug and let them know that I'll be there for them. It's just different communicating online and talking face to face.

I really feel like I'm just a fragment of my friends' past. A part of their memory. Someone who came into their lives, and is now a has been. I feel that cancer has robbed me of precious time to be spent with my friends.

I used to think that between family and friends, I'll choose my friends first. That's how much I treasure my friends. How much I love them. What I'm willing to do for them just to make them feel better, or to keep the friendship going.

It disappoints me, that friendships nowadays are so brittle and fragile. Some people are so selfish, they don't even consider your feelings. They'll do anything they can to achieve their personal goals, and hurting people along the way just doesn't matter, as long as they get what they want in the end.

I try not to rely on my friends too much, but I just can't. I trust them so much, love them so much. But what do I get in the end from some of my friends that were once so dear to me?

Hurt, betrayal, sadness, disappointment. Lovely presents, really. Just lovely.

Some of my friends that I can really trust and have no need to compete with them for anything are just so far away. I just wish I can fly off to another country and just spend time with them, pour my heart out, get some proper and mature advice and opinions.

Love yourself before loving others.

Guess what? I don't know how to.

I avoid going on Facebook, because going on Facebook can actually get me depressed. Why? I see photos of friends having a blast with other friends. Having a blast with college life. Having a blast working. Having a blast going out there and exploring the world.

Well, that could have been me.

I'm wasting my youth and the remaining years of me being a teenager - locked up at home, seeing the same things everyday. There's nothing new, there's nothing fresh, there's nothing exciting. My social skills are now nil, and I now stutter and cannot speak as fluently as I used to. I'm embarrassed of talking to people on the phone. I'm embarrassed to talk to people other than my immediate family members. I feel useless, I feel like I'm now disabled.

Compared to everyone and anyone of you that knows me, I feel inferior to all of you.

I don't want to be pitied by others. I don't want others to shed tears over my predicament.

And especially, I don't want to be famous and well-known because of me being a 17 year old going on 18 having cancer. No, please, enough of that.


I'm mentally, emotionally and physically tired.

I'm not as strong as all of you think. I have those moments when I feel totally useless, weak and hopeless.

Don't be mistaken. I'm not giving up on anything. I'm not giving up on myself, nor the hopes of recovering.

I'm just going through a tough time, emotionally and mentally.

I'm just..not okay.

P.S.: I'll respond to comments, Facebook posts, Formspring questions and Cbox messages when I feel better about myself. I'm sorry. I need time, and time isn't on my side.

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.

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I had enough.

To those of you who continuously ask me whether I'm okay or not, and seem to not believe me when I say I'm okay when I really mean it - here's some good news for you.

I'm not okay. Not at all. Not one bit.

Impatience and unbalanced hormones are both making my life miserable since radiotherapy ended.

Complete recovery from lymphoma seems unachievable.

Yes yes, call me a pessimist all you want. You think it's that simple?

You try having cancer when you're a teen who is stepping into adulthood, just wanting to have the time of your life with your family and friends.

Instead, you're isolated from civilisation and society itself. Why? The lack of white blood cells and your immune system being weaker than before. Your body cannot cope with the everyday germ, bacteria, or virus. Being infected can cause the cancer cells to massively spread to the rest of your body, namely your important internal organs. You can die just because of what is thought of as a minor flu among you normal and healthy people.

Hello! I didn't ask for cancer to happen to me. Especially not at this point of life when I'm turning 18 this year, and I was diagnosed in July last year! Just a few months more, and it would have been a year since lymphoma turned up unnecessarily in my life.

I tried to stay positive. I tried to be happy. I put a smile on my face whenever possible, I write cheerier entries on my blog, I avoid going online when I feel depressed and frustrated because I don't want to spread my unhappiness to others. I don't want to worry the people who care for me. I don't want them to feel sad or useless because they can't help lessen my pain. They can't help my cancer to just vanish into thin air and make me healthy again.

I'm sick and tired of all this waiting.

I have to wait for another agonising three months before I can go for another PET scan. I will only find out whether radiotherapy has worked its wonderful magic on me and make me cancer-free in three months' time.

Honestly, who doesn't hope for a complete recovery then?

But seriously, I no longer have high hopes for my next scan.

I had expected a complete recovery after six sessions of chemotherapy last year when I went for my first PET scan in December. Why? My doctor told me so. He said I have a high chance of complete recovery since throughout the last six months, my progress has been astoundingly great!

I made plans. Plans to finally spend time with my friends from school. Plans to go up to KL to meet up with two great people I have known online. Plans to find a job and lessen the burden of my parents who have been spending so much on my treatment. Plans to learn driving and be more independent. Plans to be a better daughter, plans to be a more responsible person.

All shattered in a matter of seconds, when the radiotherapist told me the tumour is still there, and I need to undergo further treatment.

The only good news? The tumour is smaller than before.

Fine, that's great. But to me, it's nearly like a "So what?" moment. I still have cancer. That tumour is still haunting me everyday.

I don't want to harbour high hopes on anything anymore, if it's going to result in broken dreams and a broken-hearted me.

Cancer has caused me to have this large gap between my friends in school and me. I feel like I missed out on countless conversations and fun times. I feel left out and forgotten.

Friends and friendships mean a lot to me. I'm a person who treasure friendships a lot.

No matter how much my mum tells me that friends, no matter how close they are to you now, will never stay your friends for life - I still hope that my friends can stay as friends. I hate arguments and misunderstandings between my friends and me. It really hurts me when something bad happens. Something that can cause the loss of a friend. It doesn't matter who is in the fault - whenever things go wrong, it just sucks.

I can cry on and off throughout the day, everyday. Till the problem is actually solved. To me, the possibility of losing a friend, or having a friend betray your trust - the pain is even more than falling out of love or having to deal with a breakup. I don't get romantic love at all, I'm more of a friendship love kind of girl.

I understand how all of them are busy with their own lives, with their own set of problems to solve. I understand. I really do.

It upsets me time and time again that when my friends are having problems, I can't be there for them. I cannot offer them a shoulder to cry or lean on. I cannot offer them a listening ear. I cannot give them a hug and let them know that I'll be there for them. It's just different communicating online and talking face to face.

I really feel like I'm just a fragment of my friends' past. A part of their memory. Someone who came into their lives, and is now a has been. I feel that cancer has robbed me of precious time to be spent with my friends.

I used to think that between family and friends, I'll choose my friends first. That's how much I treasure my friends. How much I love them. What I'm willing to do for them just to make them feel better, or to keep the friendship going.

It disappoints me, that friendships nowadays are so brittle and fragile. Some people are so selfish, they don't even consider your feelings. They'll do anything they can to achieve their personal goals, and hurting people along the way just doesn't matter, as long as they get what they want in the end.

I try not to rely on my friends too much, but I just can't. I trust them so much, love them so much. But what do I get in the end from some of my friends that were once so dear to me?

Hurt, betrayal, sadness, disappointment. Lovely presents, really. Just lovely.

Some of my friends that I can really trust and have no need to compete with them for anything are just so far away. I just wish I can fly off to another country and just spend time with them, pour my heart out, get some proper and mature advice and opinions.

Love yourself before loving others.

Guess what? I don't know how to.

I avoid going on Facebook, because going on Facebook can actually get me depressed. Why? I see photos of friends having a blast with other friends. Having a blast with college life. Having a blast working. Having a blast going out there and exploring the world.

Well, that could have been me.

I'm wasting my youth and the remaining years of me being a teenager - locked up at home, seeing the same things everyday. There's nothing new, there's nothing fresh, there's nothing exciting. My social skills are now nil, and I now stutter and cannot speak as fluently as I used to. I'm embarrassed of talking to people on the phone. I'm embarrassed to talk to people other than my immediate family members. I feel useless, I feel like I'm now disabled.

Compared to everyone and anyone of you that knows me, I feel inferior to all of you.

I don't want to be pitied by others. I don't want others to shed tears over my predicament.

And especially, I don't want to be famous and well-known because of me being a 17 year old going on 18 having cancer. No, please, enough of that.


I'm mentally, emotionally and physically tired.

I'm not as strong as all of you think. I have those moments when I feel totally useless, weak and hopeless.

Don't be mistaken. I'm not giving up on anything. I'm not giving up on myself, nor the hopes of recovering.

I'm just going through a tough time, emotionally and mentally.

I'm just..not okay.

P.S.: I'll respond to comments, Facebook posts, Formspring questions and Cbox messages when I feel better about myself. I'm sorry. I need time, and time isn't on my side.

Cheers.

Labels: lymphoma and me, medical procedures, musings

1 comment(s):

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