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 a surgical biopsy scheduled on the 14th of July. It was to determine the type of lymphoma I have.

Pre-surgery procedures were carried out. I had to shower and bathe myself in antiseptic. It smelt awful, I swear. I felt nauseous due to that..indescribable smell.

A nurse had to shave my body hair from waist up. I still remember, that nurse wasn't a local. I had problems communicating with her, since she couldn't speak English nor Malay fluently. She couldn't understand Chinese either.

Being a new nurse as well, she misunderstood the instructions given to her and nearly shaved my body hair from waist down as well. I don't need to go into details, you probably can figure this one out yourself.

I had to fast from midnight onwards.

My surgery was set to start at 10AM. An hour before, I had to get myself dressed in a hospital robe. I also had to wear a shower cap. Around 9.30AM, I was wheeled in a wheelchair to the OT (Operating Theatre).

There, I was transferred to a hospital bed. Since I couldn't lie down, because back then my tumour caused me to cough badly if I did so, I was seated up instead. I was wheeled to a section where other patients that were due for their respective surgeries were waiting for their turn.

I soon met my anaesthetist, Dr. Lim. He is a humourous man. He filled me in with the effects of anaesthesia, and the possible side-effects.

After that, was one of my most secretly agonising moments.

I used the word 'secretly' because I didn't want to let it show. The agony of waiting to be wheeled into the theatre, I mean.

At first, I thought that my surgery would start the moment Dr. Lim finished lecturing me and poked another needle into me for an IV drip. I just wanted to get the surgery done and over with. It didn't help that I never went under the knife before. I was extra nervous, even though the rate of success was pretty high. Still, there's always a risk in everything we do.

A nurse there switched the heater on for me. I had to admit, it was cold there. I personally dislike feeling cold. Thankfully, I'm living in Malaysia. Crazy weather we have here, but certainly suits me well indeed.

Half an hour later, the surgeon in charge of my operation still hadn't arrived yet. I felt annoyed. It was bad enough that I was scared due to the thought of being operated on, it didn't help at all witnessing other patients being wheeled to the operating room.

The other patients were all lying down, looking very solemn. I noticed I got some stares from some of these patients as it was obvious that I was the youngest there. The stares didn't last for long though. All of us there were nervous for our respective surgeries.

I was lucky that a senior nurse approached me, and started a conversation with me. She asked me about my condition, my age, where I was from, and even about my studies. She also talked to me about my ambitions and what I wanted to do in the future after I'd graduated from secondary school. She kept me fairly distracted from me thinking about the operation too much.

The other nurses there were quite shocked to see me talking animatedly with Sister Tan. They were already used to the sombre mood of the place. Some of them came up to me, as they were curious to know more about this teenager who didn't look nervous and frightened at all! Honestly, I was still nervous. I just didn't want to let it show too much.

I even got the opportunity to see the nurses and different surgeons rushing here and there, preparing themselves for the patients' operations. At other times, it was just them sitting around, having random conversations to pass time before the next patient comes by.

Finally, two hours after my surgery was scheduled to begin, Dr. Lee arrived. I was wheeled into the theatre, and I started to pray really hard.

In the theatre, it was a very bright and white place. Unlike those you see in serial dramas and movies, the contrast of the atmosphere couldn't be missed.

A nurse helped me to put on a mask, and here comes the funny part.

Below is the conversation I had with Dr. Lim.

L - Leonie, D - Dr. Lim.

D: Okay, this is oxygen you're breathing in now. Just to let you know.
L: Alright!
D: I'm going to start putting in the anaesthesia now. Don't worry! In a few seconds, you're going to smell a nice, berry-like smell. I'm generous to give you a raspberry flavour one!

To my extreme horror and shock, the so-called raspberry smell didn't smell pleasant at all! It actually smelt funny to me, and I didn't appreciate having to smell something like that. I nearly pulled my mask off, but the nurse stopped me. I panicked at the weird smell of the anaesthesia, so I took in deep, quick short breaths. Before I knew it, I knocked out shortly afterwards.

Come to think of it, I think I panicked because my body realised I was about to fall unconscious.

The next thing I knew, I woke up in the ICU because apparently, I was in a coma. The doctors and nurses couldn't wake me up after the operation was completed.

In my humble opinion, I think I couldn't come to because I took in too much anaesthesia at the start. I secretly blame Dr. Lim for that. Haha.

And this is my story of my very first surgery.

Cheers to all!

Labels: lymphoma and me, medical procedures

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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 a surgical biopsy scheduled on the 14th of July. It was to determine the type of lymphoma I have.

Pre-surgery procedures were carried out. I had to shower and bathe myself in antiseptic. It smelt awful, I swear. I felt nauseous due to that..indescribable smell.

A nurse had to shave my body hair from waist up. I still remember, that nurse wasn't a local. I had problems communicating with her, since she couldn't speak English nor Malay fluently. She couldn't understand Chinese either.

Being a new nurse as well, she misunderstood the instructions given to her and nearly shaved my body hair from waist down as well. I don't need to go into details, you probably can figure this one out yourself.

I had to fast from midnight onwards.

My surgery was set to start at 10AM. An hour before, I had to get myself dressed in a hospital robe. I also had to wear a shower cap. Around 9.30AM, I was wheeled in a wheelchair to the OT (Operating Theatre).

There, I was transferred to a hospital bed. Since I couldn't lie down, because back then my tumour caused me to cough badly if I did so, I was seated up instead. I was wheeled to a section where other patients that were due for their respective surgeries were waiting for their turn.

I soon met my anaesthetist, Dr. Lim. He is a humourous man. He filled me in with the effects of anaesthesia, and the possible side-effects.

After that, was one of my most secretly agonising moments.

I used the word 'secretly' because I didn't want to let it show. The agony of waiting to be wheeled into the theatre, I mean.

At first, I thought that my surgery would start the moment Dr. Lim finished lecturing me and poked another needle into me for an IV drip. I just wanted to get the surgery done and over with. It didn't help that I never went under the knife before. I was extra nervous, even though the rate of success was pretty high. Still, there's always a risk in everything we do.

A nurse there switched the heater on for me. I had to admit, it was cold there. I personally dislike feeling cold. Thankfully, I'm living in Malaysia. Crazy weather we have here, but certainly suits me well indeed.

Half an hour later, the surgeon in charge of my operation still hadn't arrived yet. I felt annoyed. It was bad enough that I was scared due to the thought of being operated on, it didn't help at all witnessing other patients being wheeled to the operating room.

The other patients were all lying down, looking very solemn. I noticed I got some stares from some of these patients as it was obvious that I was the youngest there. The stares didn't last for long though. All of us there were nervous for our respective surgeries.

I was lucky that a senior nurse approached me, and started a conversation with me. She asked me about my condition, my age, where I was from, and even about my studies. She also talked to me about my ambitions and what I wanted to do in the future after I'd graduated from secondary school. She kept me fairly distracted from me thinking about the operation too much.

The other nurses there were quite shocked to see me talking animatedly with Sister Tan. They were already used to the sombre mood of the place. Some of them came up to me, as they were curious to know more about this teenager who didn't look nervous and frightened at all! Honestly, I was still nervous. I just didn't want to let it show too much.

I even got the opportunity to see the nurses and different surgeons rushing here and there, preparing themselves for the patients' operations. At other times, it was just them sitting around, having random conversations to pass time before the next patient comes by.

Finally, two hours after my surgery was scheduled to begin, Dr. Lee arrived. I was wheeled into the theatre, and I started to pray really hard.

In the theatre, it was a very bright and white place. Unlike those you see in serial dramas and movies, the contrast of the atmosphere couldn't be missed.

A nurse helped me to put on a mask, and here comes the funny part.

Below is the conversation I had with Dr. Lim.

L - Leonie, D - Dr. Lim.

D: Okay, this is oxygen you're breathing in now. Just to let you know.
L: Alright!
D: I'm going to start putting in the anaesthesia now. Don't worry! In a few seconds, you're going to smell a nice, berry-like smell. I'm generous to give you a raspberry flavour one!

To my extreme horror and shock, the so-called raspberry smell didn't smell pleasant at all! It actually smelt funny to me, and I didn't appreciate having to smell something like that. I nearly pulled my mask off, but the nurse stopped me. I panicked at the weird smell of the anaesthesia, so I took in deep, quick short breaths. Before I knew it, I knocked out shortly afterwards.

Come to think of it, I think I panicked because my body realised I was about to fall unconscious.

The next thing I knew, I woke up in the ICU because apparently, I was in a coma. The doctors and nurses couldn't wake me up after the operation was completed.

In my humble opinion, I think I couldn't come to because I took in too much anaesthesia at the start. I secretly blame Dr. Lim for that. Haha.

And this is my story of my very first surgery.

Cheers to all!

Labels: lymphoma and me, medical procedures

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