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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Hello again readers.

I realised my previous entry was a very emotional one. Well, I guess that's the result of too much pent-up emotions.

Also, I realised the need to write a new entry, a more cheery one at that, to avoid some of my loved ones who read this blog getting too upset and/or worried for me.

So, I started radiotherapy on the 20th this month, and I had nine fractions done so far. The radiotherapists are a nice lot of people. One's a constant joker, one's a knowledgeable man, and one who treats me like her little sister.

I often see the same faces during the weekdays, since once a patient starts undergoing radiotherapy, he or she has to continue the treatment all the way until all fractions are completed. You can't stop halfway, or miss even one fraction. Maybe there are special circumstances to the aforementioned sentence, but normally, it brings dire consequences if one's radiotherapy regime is not strictly followed.

Lymphoma is still not a very commonly known cancer. Point is definitely proven, because even I have not heard of such a cancer till I myself was diagnosed with it. Most of the patients I have met were diagnosed with cancers such as cervical cancer, nose cancer, and breast cancer - the more common types of cancer affecting humans. And honestly, even though we have different types of cancer, only we can understand the side effects we have to face from chemotherapy and/or radiotherapy.

From that, I would like to quote a fellow blogger, Ming Wei, who was also diagnosed with lymphoma earlier in the year.

I'm just directly translating, but it sounds something like this.

"You're not a fish.
So how do you know whether the fish is happy or sad?"
It sounds more poetic in Chinese, really. But it cannot be any truer than that. In simpler terms,


No offense, readers. I am aware that my family and friends are trying their very best to understand my condition - whether physically or emotionally.

But no matter what, healthy and normal people can never fully and thoroughly understand what we have to endure through treatment, and life after cancer.

Only fellow cancer patients can truly understand how uncomfortable chemotherapy is.

To have a needle pricked into your veins and have very toxic medicinal fluids enter your body.
To go under the knife to have this inserted into your body for those having to endure several sessions of chemotherapy.
To go through hair loss, which harbours great emotional burden to many - especially women.

There are, of course, a lot more side effects from treatment, but I'm sure you can do your own research and homework. What's more, a lot of the side effects are general knowledge.

From radiotherapy, the skin where the rays are directed may be damaged. When I say damaged, just think of you and your worst case of sunburns. Yeah, just like that.

And wherever the rays are directed at (obviously it's where the tumour is in the body), more side effects tend to turn up.

Let's say one who has nose cancer undergoes radiotherapy, he or she tends to suffer from a runny/blocked nose, severe headaches and dizzy spells. This is because the rays tend to affect the area where the tumour is and the surroundings areas.

One who has cervical cancer, might suffer from a very bad case of diarrhea, abdominal pains, and stomach discomfort.

As for me, some of the rays will partially hit one of my main blood vessels (the superior vena cava) and my throat (the oesophagus), so I have been warned by my doctor that I will have a weak heart and in due time, continuous coughing, sore throats, and difficulty in swallowing food.

Some of the patients have to undergo both chemotherapy and radiotherapy at the same time. I'm considered lucky in that sense. The side effects from chemotherapy are bad enough, and having the side effects from radiotherapy to deal with as well - not a very ideal combination at all.

What I have mentioned are nothing but the facts. I may not be a certified doctor in this field, but I do not share untruths and rumours that are not proven scientifically with my readers. There are enough assumptions out there, and truthfully, I'm sick of each and every one of those assumptions. Instead, sharing the facts to anyone who reads my blog is a good start in erasing those assumptions one by one and having more people understand cancer and how it affects people and their everyday lives.

Not a very cheery entry, but at least it's not emotional and angsty. (:

Cheers.

Labels: lymphoma and me, medical procedures, musings, real life stories

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And I don't see the end yet. Not at all.

Hello reader(s). It's been some time since I last blogged. I miss blogging, honestly.

For me, SPM ended about one week ago. The 9th of December 2010 was the day when some of my peers who took their last papers screamed for joy and celebrated their freedom. The day which marked the end of high school for us.

That day was one of my most miserable moments in life. I cried right after the invigilator left the counselling room where I was isolated from the rest throughout SPM. I did badly for Accounts Paper 2, and ended up writing some nonsense just to fill in the answer sheets.

In the room, I can hear laughter and shrieks of happiness.

Through the window, I can see my friends and classmates jumping around, taking photos and videos. They're hugging each other too.

Everyone was just happy that their last paper was over.

Except for me.

I never felt so left out before.

I can't hug my friends, because I'm susceptible to infections and contagious illnesses. And I don't think most of my friends even remembered that I was there, in the counselling room, amidst their joy and laughter.

I felt..forgotten.

Being away from school for half a year is not as awesome as most of my peers think. I can't see my friends, I can't keep up with my studies. People seem to think that I have a lot of time to study and do revision in the comforts of my own home.

Wrong. I spend most of the time recuperating from the side effects of chemotherapy. I hardly have the energy to study the first few months of me receiving treatment. And, I also happen to spend most of my time in the hospital and in Malacca. Stop making assumptions if you don't have the facts.

It's as if I'm slowly fading from everyone's memories.

It's as if..I don't exist in their lives anymore.

It's just painful for me to have these kind of thoughts haunting my head, whether they're true or not.

My mum never fails to remind me that there is no such thing as 'friends forever'. I believe in that too, since most of the friendships I'd been in just don't work out in the end. It's undeniable that generally, everybody is selfish. Everybody wants the good things for their ownselves. Not everybody likes to share.

My mum also never fails to tell me that I'm too soft. It's true. I treasure my friends a lot. They mean so much to me. Betraying their secrets that they trusted me with or bitching about them is the last thing that I'll do. I do my best to help them out if they have any problems. I'm their shoulder for them to lean on. I'm the listener among my friends. I don't know how to say no to my friends' requests or favours.

It's only now, when I have cancer, I know who my real friends are.

People who I thought that could care less about me, continuously offered me the encouragement and support I need.

There are friends that stuck by me all the way, and still are.

Then there are the bad apples. I'm not in the mood to elaborate now.

I have many dissatisfactions to blog about. But I guess I'll just have to save them for later.

To summarise, I'm not cancer-free yet. The tumour inside of me is still active, but it is now smaller than before. It is now measuring at 6cm. I'll be undergoing radiotherapy in Johor Bahru, and most probably I have to deal with 20 to 25 fractions. That means I'll have to undergo radiotherapy for at least 20 to 25 days. Maybe more, maybe less. A month after treatment, and I'll go for another PET scan. If the results are still negative, I'll have to undergo a bone marrow transplant. You did not read that wrongly.

My life is in constant danger everyday. Waking up to a new day knowing that I'm still alive is a miracle.

So a friendly note to my peers who complain they are super bored with life after SPM, be grateful you don't have my so-called exciting life. If you're really that bored, go help out with the house chores, get a job, hang out with friends, spend time with your family, or indulge in your hobbies. I can't believe you guys can actually be bored when there is so much you guys can do, that I can't.

Cheers.

Labels: i'm grateful and blessed for.., life lessons, 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.

Hello again readers.

I realised my previous entry was a very emotional one. Well, I guess that's the result of too much pent-up emotions.

Also, I realised the need to write a new entry, a more cheery one at that, to avoid some of my loved ones who read this blog getting too upset and/or worried for me.

So, I started radiotherapy on the 20th this month, and I had nine fractions done so far. The radiotherapists are a nice lot of people. One's a constant joker, one's a knowledgeable man, and one who treats me like her little sister.

I often see the same faces during the weekdays, since once a patient starts undergoing radiotherapy, he or she has to continue the treatment all the way until all fractions are completed. You can't stop halfway, or miss even one fraction. Maybe there are special circumstances to the aforementioned sentence, but normally, it brings dire consequences if one's radiotherapy regime is not strictly followed.

Lymphoma is still not a very commonly known cancer. Point is definitely proven, because even I have not heard of such a cancer till I myself was diagnosed with it. Most of the patients I have met were diagnosed with cancers such as cervical cancer, nose cancer, and breast cancer - the more common types of cancer affecting humans. And honestly, even though we have different types of cancer, only we can understand the side effects we have to face from chemotherapy and/or radiotherapy.

From that, I would like to quote a fellow blogger, Ming Wei, who was also diagnosed with lymphoma earlier in the year.

I'm just directly translating, but it sounds something like this.

"You're not a fish.
So how do you know whether the fish is happy or sad?"
It sounds more poetic in Chinese, really. But it cannot be any truer than that. In simpler terms,


No offense, readers. I am aware that my family and friends are trying their very best to understand my condition - whether physically or emotionally.

But no matter what, healthy and normal people can never fully and thoroughly understand what we have to endure through treatment, and life after cancer.

Only fellow cancer patients can truly understand how uncomfortable chemotherapy is.

To have a needle pricked into your veins and have very toxic medicinal fluids enter your body.
To go under the knife to have this inserted into your body for those having to endure several sessions of chemotherapy.
To go through hair loss, which harbours great emotional burden to many - especially women.

There are, of course, a lot more side effects from treatment, but I'm sure you can do your own research and homework. What's more, a lot of the side effects are general knowledge.

From radiotherapy, the skin where the rays are directed may be damaged. When I say damaged, just think of you and your worst case of sunburns. Yeah, just like that.

And wherever the rays are directed at (obviously it's where the tumour is in the body), more side effects tend to turn up.

Let's say one who has nose cancer undergoes radiotherapy, he or she tends to suffer from a runny/blocked nose, severe headaches and dizzy spells. This is because the rays tend to affect the area where the tumour is and the surroundings areas.

One who has cervical cancer, might suffer from a very bad case of diarrhea, abdominal pains, and stomach discomfort.

As for me, some of the rays will partially hit one of my main blood vessels (the superior vena cava) and my throat (the oesophagus), so I have been warned by my doctor that I will have a weak heart and in due time, continuous coughing, sore throats, and difficulty in swallowing food.

Some of the patients have to undergo both chemotherapy and radiotherapy at the same time. I'm considered lucky in that sense. The side effects from chemotherapy are bad enough, and having the side effects from radiotherapy to deal with as well - not a very ideal combination at all.

What I have mentioned are nothing but the facts. I may not be a certified doctor in this field, but I do not share untruths and rumours that are not proven scientifically with my readers. There are enough assumptions out there, and truthfully, I'm sick of each and every one of those assumptions. Instead, sharing the facts to anyone who reads my blog is a good start in erasing those assumptions one by one and having more people understand cancer and how it affects people and their everyday lives.

Not a very cheery entry, but at least it's not emotional and angsty. (:

Cheers.

Labels: lymphoma and me, medical procedures, musings, real life stories

4 comment(s):

Post a Comment

And I don't see the end yet. Not at all.

Hello reader(s). It's been some time since I last blogged. I miss blogging, honestly.

For me, SPM ended about one week ago. The 9th of December 2010 was the day when some of my peers who took their last papers screamed for joy and celebrated their freedom. The day which marked the end of high school for us.

That day was one of my most miserable moments in life. I cried right after the invigilator left the counselling room where I was isolated from the rest throughout SPM. I did badly for Accounts Paper 2, and ended up writing some nonsense just to fill in the answer sheets.

In the room, I can hear laughter and shrieks of happiness.

Through the window, I can see my friends and classmates jumping around, taking photos and videos. They're hugging each other too.

Everyone was just happy that their last paper was over.

Except for me.

I never felt so left out before.

I can't hug my friends, because I'm susceptible to infections and contagious illnesses. And I don't think most of my friends even remembered that I was there, in the counselling room, amidst their joy and laughter.

I felt..forgotten.

Being away from school for half a year is not as awesome as most of my peers think. I can't see my friends, I can't keep up with my studies. People seem to think that I have a lot of time to study and do revision in the comforts of my own home.

Wrong. I spend most of the time recuperating from the side effects of chemotherapy. I hardly have the energy to study the first few months of me receiving treatment. And, I also happen to spend most of my time in the hospital and in Malacca. Stop making assumptions if you don't have the facts.

It's as if I'm slowly fading from everyone's memories.

It's as if..I don't exist in their lives anymore.

It's just painful for me to have these kind of thoughts haunting my head, whether they're true or not.

My mum never fails to remind me that there is no such thing as 'friends forever'. I believe in that too, since most of the friendships I'd been in just don't work out in the end. It's undeniable that generally, everybody is selfish. Everybody wants the good things for their ownselves. Not everybody likes to share.

My mum also never fails to tell me that I'm too soft. It's true. I treasure my friends a lot. They mean so much to me. Betraying their secrets that they trusted me with or bitching about them is the last thing that I'll do. I do my best to help them out if they have any problems. I'm their shoulder for them to lean on. I'm the listener among my friends. I don't know how to say no to my friends' requests or favours.

It's only now, when I have cancer, I know who my real friends are.

People who I thought that could care less about me, continuously offered me the encouragement and support I need.

There are friends that stuck by me all the way, and still are.

Then there are the bad apples. I'm not in the mood to elaborate now.

I have many dissatisfactions to blog about. But I guess I'll just have to save them for later.

To summarise, I'm not cancer-free yet. The tumour inside of me is still active, but it is now smaller than before. It is now measuring at 6cm. I'll be undergoing radiotherapy in Johor Bahru, and most probably I have to deal with 20 to 25 fractions. That means I'll have to undergo radiotherapy for at least 20 to 25 days. Maybe more, maybe less. A month after treatment, and I'll go for another PET scan. If the results are still negative, I'll have to undergo a bone marrow transplant. You did not read that wrongly.

My life is in constant danger everyday. Waking up to a new day knowing that I'm still alive is a miracle.

So a friendly note to my peers who complain they are super bored with life after SPM, be grateful you don't have my so-called exciting life. If you're really that bored, go help out with the house chores, get a job, hang out with friends, spend time with your family, or indulge in your hobbies. I can't believe you guys can actually be bored when there is so much you guys can do, that I can't.

Cheers.

Labels: i'm grateful and blessed for.., life lessons, lymphoma and me, medical procedures, musings

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