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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Today marks the 100th day since my stem cell transplant.

Even though the side effects from treatment are still causing me discomforts, I guess it'll cause less worry among my friends, readers and anyone who knows me well with an update.

I'll try and keep this short and concise. (It'll be hard though, I have a lot to say; do bear with me.)

1. Words will never be enough to describe how thankful I am for everyone's generous contributions. (I'll appreciate it a lot if some of you do not use the word 'donations'. It makes me sound like I'm a charity case. Or am I, without me realising it...?) They have definitely helped. I just hope that I can recover soon and have no more relapses so I don't have to burden my parents more; them spending so much money on me when we're not from a well-to-do family. I will always feel guilty for that.
   
   
2. I will definitely thank each and every single person that had contributed personally to those who had informed me of their details or/and their friends' and family members' details. It will take a lot of time though, please be and stay understanding of my condition. One of the main reasons why I haven't been updating is because I get very tired easily nowadays: it's a common side effect from the transplant.
   
   
3. I am recuperating from my stem cell transplant, but I sincerely have no idea whether I'm on the road to recovery or not. The point is:
   
   Recuperating ≠ Recovering.
   Frankly, who doesn't hope for the latter? I wish I have X-ray vision to see whether there is any growth of anything abnormal or not, so I not only cannot give an answer to every concerned individual who asks, but also to my family and myself. It is worrying whenever I feel a pain here or there, I'll get paranoid about it and worry that my cancer may be back to haunt me. You'll be doing me a huge favour by not asking, because I feel guilty that I cannot produce an answer for you. Many thanks in advance.
   
   
4. I am under quarantine. Strictly no visitors allowed, I'm sorry to say. I do miss my friends a lot and it upsets me whenever I have to reject any of my friends who wants to visit and keep me company(and sane, as well). I'm sorry, and truly am.
   
   
5. Every comment and tag, I had read. I really appreciate them so much; all this support is a good reason for me to stay positive and strong whenever I get discouraged about my condition. I really would like to respond to everyone, but I find it not possible at the moment. But sincerely, thank you, you and you.
   
   
6. As much as they are filled with good intentions, please think before you ask me any questions. Some of them are not only offensive, but also very hurtful. I can't expect everyone to understand, because all of you are healthy people while I'm the one stuck with cancer. From a cancer patient's point of view, I believe that generally, only cancer patients(in my case, blood cancer patients) can really understand how I feel and what I'm coping with; the physical discomforts, the emotional breakdowns, the limitations, the challenge to maintain positive, happy and content just to see the light of another day.
   
   
7. Emotions-wise, I have been feeling like a wreck very often. The smallest of matters can trigger me to cry and actually sob loudly(I don't know what my neighbours will think of me, but what the heck). It's not normal to me; I was very good at holding back my tears during my pre-cancer days. Then, if I ever was caught crying in public(which was super rare) - you'll know that I'm really very upset. Now? The tears come too fast, and too much for my liking. I really hate that I cannot control my emotions as well as before. That definitely adds to my feeling extremely useless. Another reason why I didn't update earlier - I don't want my blog posts to be full of anger and frustration. I don't find entries filled with such negativity of much substance.
   
   
8. Facebook is killing me. I do want to know what my friends are up to. I admit - I badly want to fit in and keep myself updated with their lives. It's like an addiction for me who has to stay at home and get cooped up all day long - with only the television and laptop for company. But, I get jealous of my friends posting photos of them with other friends; living normal lives and especially the girls - looking beautiful and just awesome. I can't force them to post what I want to see and not post what gets me upset, that would just be mean and selfish of me. But I won't deny, it hurts. I look at myself - bald, unhealthy and useless. I don't feel good about myself, not one bit.
   
   
9. I'm getting tired. Really tired. When will freedom arrive? When can I fully recover, and recover the life I'm supposed to have? It's so hard to stay positive as time goes by. Giving up is definitely not an option, but fighting on is just as difficult.
   

Labels: lymphoma and me, 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.

Today marks the 100th day since my stem cell transplant.

Even though the side effects from treatment are still causing me discomforts, I guess it'll cause less worry among my friends, readers and anyone who knows me well with an update.

I'll try and keep this short and concise. (It'll be hard though, I have a lot to say; do bear with me.)

1. Words will never be enough to describe how thankful I am for everyone's generous contributions. (I'll appreciate it a lot if some of you do not use the word 'donations'. It makes me sound like I'm a charity case. Or am I, without me realising it...?) They have definitely helped. I just hope that I can recover soon and have no more relapses so I don't have to burden my parents more; them spending so much money on me when we're not from a well-to-do family. I will always feel guilty for that.
   
   
2. I will definitely thank each and every single person that had contributed personally to those who had informed me of their details or/and their friends' and family members' details. It will take a lot of time though, please be and stay understanding of my condition. One of the main reasons why I haven't been updating is because I get very tired easily nowadays: it's a common side effect from the transplant.
   
   
3. I am recuperating from my stem cell transplant, but I sincerely have no idea whether I'm on the road to recovery or not. The point is:
   
   Recuperating ≠ Recovering.
   Frankly, who doesn't hope for the latter? I wish I have X-ray vision to see whether there is any growth of anything abnormal or not, so I not only cannot give an answer to every concerned individual who asks, but also to my family and myself. It is worrying whenever I feel a pain here or there, I'll get paranoid about it and worry that my cancer may be back to haunt me. You'll be doing me a huge favour by not asking, because I feel guilty that I cannot produce an answer for you. Many thanks in advance.
   
   
4. I am under quarantine. Strictly no visitors allowed, I'm sorry to say. I do miss my friends a lot and it upsets me whenever I have to reject any of my friends who wants to visit and keep me company(and sane, as well). I'm sorry, and truly am.
   
   
5. Every comment and tag, I had read. I really appreciate them so much; all this support is a good reason for me to stay positive and strong whenever I get discouraged about my condition. I really would like to respond to everyone, but I find it not possible at the moment. But sincerely, thank you, you and you.
   
   
6. As much as they are filled with good intentions, please think before you ask me any questions. Some of them are not only offensive, but also very hurtful. I can't expect everyone to understand, because all of you are healthy people while I'm the one stuck with cancer. From a cancer patient's point of view, I believe that generally, only cancer patients(in my case, blood cancer patients) can really understand how I feel and what I'm coping with; the physical discomforts, the emotional breakdowns, the limitations, the challenge to maintain positive, happy and content just to see the light of another day.
   
   
7. Emotions-wise, I have been feeling like a wreck very often. The smallest of matters can trigger me to cry and actually sob loudly(I don't know what my neighbours will think of me, but what the heck). It's not normal to me; I was very good at holding back my tears during my pre-cancer days. Then, if I ever was caught crying in public(which was super rare) - you'll know that I'm really very upset. Now? The tears come too fast, and too much for my liking. I really hate that I cannot control my emotions as well as before. That definitely adds to my feeling extremely useless. Another reason why I didn't update earlier - I don't want my blog posts to be full of anger and frustration. I don't find entries filled with such negativity of much substance.
   
   
8. Facebook is killing me. I do want to know what my friends are up to. I admit - I badly want to fit in and keep myself updated with their lives. It's like an addiction for me who has to stay at home and get cooped up all day long - with only the television and laptop for company. But, I get jealous of my friends posting photos of them with other friends; living normal lives and especially the girls - looking beautiful and just awesome. I can't force them to post what I want to see and not post what gets me upset, that would just be mean and selfish of me. But I won't deny, it hurts. I look at myself - bald, unhealthy and useless. I don't feel good about myself, not one bit.
   
   
9. I'm getting tired. Really tired. When will freedom arrive? When can I fully recover, and recover the life I'm supposed to have? It's so hard to stay positive as time goes by. Giving up is definitely not an option, but fighting on is just as difficult.
   

Labels: lymphoma and me, musings

3 comment(s):

Post a Comment