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Hello! I'm Leonie. I’m from Malaysia. I am nineteen this year, and I have Non-Hodgkin’s Lymphoma - a kind of blood cancer. I’m just trying to live my life to the fullest, without any regrets. I'm grateful that I’m still able to wake up to a brand new day and know that I'm still alive.

I refuse to refer to my condition as a disease. I would rather phrase it as a 'series of unfortunate events'.

I learn something new with each passing day. This is the story of my journey, and you're welcome to follow me in every step that I take.

If you would like to learn more about me and my condition, feel free to click on the navigations below. If you have any queries or would just like to say hello, drop me an e-mail at dancingpapercranes@live.com.my and I'll try to respond as soon as possible!

Cheers!




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13:57
Monday, 7 May 2012
Complaints and Some Negativity.

Hello loyal readers! While I am still reasonably alert, and while I still can, here is pretty much all you need to know about what happened to me since my last entry.

My cancer came back...again. It surprisingly spread to my lungs, causing my cough to return and to my right kidney again. This was discovered through a chest X-ray and an ultrasound done at the abdominal area around the end of April.

Chemotherapy is not likely to work on me anymore, as I had the strongest dosage of chemotherapy administered to me previously before my stem cell transplant. Radiotherapy at so many random areas where the tumours are situated is also not advisable. Hence, I am now under a new kind of medication. Unfortunately, a very expensive kind as well. I am praying and hoping with all my heart and soul that this new medicine can work its magic on me and rid of all of these evil cancer cells once and for all.

The relapse of my cancer for the third time is not only devastating, heartbreaking, and torturing my family and myself; it also sounds somehow ridiculous. Even if I don't find it ridiculous, I know that there are a few people who just might have this thought flash through their minds, even if it's only briefly,

"Not again? Come on, can't she get well already?!"

Well, you're not the only one who wants me to get well. That's me, and a whole lot of other people out there.

I have been battling cancer since I was seventeen in 2010. It's already going to be mid-2012, and here I am, wondering if there was actually any improvement to my condition throughout this journey.

I see articles of teens around my age who got the same condition, and went through similar treatments. Yet, while they are already under remission, I am still stuck with this annoying thing called cancer.

I am truly happy that cancer is out of their lives. Seriously, cancer is no joke. Cancer isn't just some minor flu that you can control with a couple of pills or just simply shrug it off.

But honestly, I question myself so many times,

"When is it going to be my turn to recover...?"

I follow my doctor's orders down to a tee. I'm careful with my food. There are all these 'tips' on how to manage one's diet when one is struck with cancer, i.e. no meat, no seafood except for fish(then again, some people also mentioned that fish without scales and fish with whiskers like catfishes should also be avoided), nothing fried and oily, etc. There are some who say that I must become a vegetarian at a chance of a full recovery and a long remission.

Despite being a massive food lover, I sometimes feel like I'm stressing myself out by putting all these limitations onto myself. I admit, I get paranoid. I adhere to these seemingly stupid rules when I can(and that is most of the time) for that tiny glimmer of hope that I can get better. Also, I am getting desperate. Since people have all these rules tried and tested, I thought to myself, why not give it a shot?

But no, it doesn't work on me, apparently.

I'm really frustrated, and I'm running out of options. I have readers who had left me tags and comments on alternative treatments. I thank these readers for sharing such information with me. Right now, I'm doing whatever research I can on these treatments. To be very honest, I hope I don't need to resort to them after this.

Meanwhile, besides all of the depressing news and rants that I just loaded you readers with, I do have some positive things to blog about. But all of that shall be in another entry, which I'm hoping will materialise very soon instead of me making seemingly empty promises on blog posts that never seem to appear on this humble little space of mine.

Till then, take good care and lots of love from this blogger.

Cheers!

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19:51
Tuesday, 31 January 2012
A Different Kind of New Year.

Hello dear readers!

It's already going to be February very soon. Tomorrow, to be exact.

I'm going to make this a quick one, but it's definitely going to be slightly more detailed than my previous entry.

Recently, I have been going for radiotherapy sessions (again). The usual staff are still there, and they still remember me. Of course, no one is happy that I have to go for more fractions. It does make things easier for me; the familiar surroundings, En. Owl the joker and Kak N the sisterly figure (real names shall not be revealed here, since they are medical staff) and knowing the procedures without feeling all awkward.

I'm not let off from the side effects, though.

Since my PET scan results from last December showed that I still have this one tumour (whether it's a relapse of my cancer or my transplant unfortunately did not work out as well as everyone thought, it remains unknown. Still, I strongly believe it's the former. There are the results from various blood tests to support my opinion, even if I'm not a certified doctor or MO of any kind) at my left kidney, I was advised to go for radiotherapy once more.

According to my doctor in KL, chemotherapy won't work for me anymore; I was administered the strongest dosage prior to my stem cell transplant, and the cancer cells in my body showed resistance, apparently. Also, there's no point in damaging my healthy cells with more chemotherapy, since it isn't going to work.

So, it's daily trips to the hospital again.

All this at the expense of something - I'll lose the function of my left kidney.

The kidney is quite a fragile organ, it seems. It cannot receive more than a certain amount of radiation, or else it faces major damage.

In my case, it's either sacrificing one kidney, or sacrificing my life.

With the choices given, it's not that hard to decide, really.

I'm getting tired. Tired of all the treatments, tired of burdening my loved ones, tired of worrying the people who care for me. It hurts to see their worn-out faces too.

Will it be too much to ask for cancer to go away already and for me to get through this ordeal?

With the experience I've gained from fighting cancer, I certainly could do inspiring more people with my story. Or helping those in need now. I'm not too used being the one who needs help, to be honest. It kind of makes me feel extremely vulnerable, somehow. And I certainly don't like feeling that way.

Oh, and I don't need anybody to tell me that it's the journey that matters, and not the destination.

You guys have no idea how aware I am of that.

Till another longer post, I hope!

Happy Chinese New Year to all who celebrates it! (Technically, it lasts for 15 days, so I'm not late!)

Cheers!

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13:41
Monday, 2 January 2012
Starting Afresh.

Hello readers.

I feel obliged to apologise to everyone because I haven't been updating, but I think I'm not going to.

The pleasing disease needs to be cured. Or cancer won't.

All that everyone needs to know for now:

Cancer is back in my life once more.

I'll give the details later.

For now, I'll just like to spend some time with my family.

By the way, hope this new layout is well-received!

Cheers.

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18:17
Tuesday, 25 October 2011
Read Before You Ask.

I have been trying my best to keep myself fairly busy, without overtiring myself. Sometimes, I still have this mentality that I am still a normal, healthy person and I can afford to exert myself occasionally. Unfortunately, I will only realise the consequences after I unconsciously physically tire myself out.

Anyway, I feel slightly more alert nowadays. I'm assuming it should be due to the steroids I have been prescribed by my doctor. Currently on more oral medication to hopefully stabilize my condition after the completion of my stem cell transplant.

It’s been tough, that I won’t deny.

It has been ages since I gave a proper update, so in this entry I think I'm going to clarify some matters that were of concern since the start of my transplant till now.

Bone marrow transplant? Stem cell transplant? Huh?
A lot of you are confused regarding this matter. I can understand, because if I wasn't diagnosed with cancer - I wouldn't have known any better either.

When I first started treatment in KL, my doctor told me that I have to undergo a bone marrow transplant. Therefore, that's exactly what I wrote on this blog for everyone to know. I have to go for a bone marrow transplant.

Afterwards, I started using the phrase 'stem cell transplant' in my blog. People starting asking me,

"Leonie, are you going through two different kinds of treatment now?"

"What happened to the plan of you going for a bone marrow transplant?"

"What's a stem cell transplant?"

"Leonie, you have to go through this major operation for your bone marrow transplant right?

The list of such questions goes on and on.

Okay, I'll do my best to answer these questions without adding any inaccurate information by complete accident. But you have been warned, I'm only explaining with my current level of understanding and knowledge. I'm not the doctor nor the expert here, so if I happen to get any facts wrong - don't sue me.

Apparently, bone marrow transplant = stem cell transplant. The common idea of having to undergo a bone marrow transplant in the minds of the general public is the patient and the donor are required to be given general anaesthesia(GA), i.e. both patients are unconscious during the operation. A part of the bone marrow is extracted from the donor, and that part is given to the patient - all these happen during the surgery.

With the advancement in medical science, we now have this procedure called the stem cell transplant. It works the same way as the bone marrow transplant, but the procedures are different.

The treatment I went through required me to have a CVC line inserted at my neck(this was a minor operation by the way, only local anaesthesia(LA) was administed at my neck). This functions to extract my blood from my body and through this medical equipment – separates the different kinds of cells in your blood. After that, the stem cells are preserved till the patient's transplant. High dose chemotherapy is given, and the stem cells returned to the patient.

I wasn't knocked out in any way at all.

This treatment I went through is also known as autologous stem cell transplantation.

Life during/after the transplant.
It didn’t make any difference being discharged from the hospital after I was done with my transplant. (I was there for approximately three weeks for my transplant.) I was re-admitted again and again due to quite serious cases of blood infection that caused me to have high fever that nearly hit 40°C. You do the math. All I can tell you is that my head feels really sore after so many bouts of high fever; my brain’s been getting stressed out a lot.

It’s definitely not easy for my parents either, having to rush me all the way to the hospital in KL. Mind you, that’s five hours of driving for my dad and exhaustion, stress and unhealthy meals for both my parents. Not forgetting the costs of staying in the hospital to get treatment. Worrying my brother as well, knowing that he lives in another part of KL and despite his busy schedule in university and all – wants to come over and keep me company.

Did I mention that I have very supportive and awesome family members? Yeah, I think I mentioned that before.

I really hope that’s the end of all that.

While the cells are readjusting themselves in the body post-transplant, patients will go through a variety of side effects. Some of the unfortunate events I went through are:
  1. Vomiting blood. Twice. This caused some commotion for the nurses and my doctor. I then found out that the news of me vomitting blood had spread to nearly all of the staff in the entire bulding. Go figure.

  2. More bouts of high fever, causing me to feel extremely cold and shiver a lot. I remember needing to have three to four layers of blankets in attempt to help me feel more comfortable, plus I wore mittens, socks and a wool hat. A few nurses said that I looked like I was all geared up for winter, ready for a skiing trip. I'll leave it to your imagination.

  3. More vomiting...

  4. A very bad sore throat and tongue. Swallowing was really a pain. It's very similar to what I had to go through before, and you can read about it here. Felt more awful though throughout the treatment process.
All these, went on for about two months or so. I didn't want to worry anybody on purpose, you see. You try going through all the shit I had to go through, and see whether you're fit good enough to go online and respond to people, even if you've really wanted to.

This is just a scam! They are just con artists!
As a result, my family and I were accused of cheating people of their money, and running off after getting their cash. Some said that my parents were using me or taking advantage of me to con people of their money. Others said that I edited my photo to look bald, and convince people that I have cancer.

OH PLEASE!

I wish some people would just have some common sense for a bit!

Cancer isn't funny at all. Cancer is something so serious, it is capable of taking your loved ones' lives away.

Who bloody wants to end up with cancer anyway? Definitely no one, of course!

Cancer is not a joking matter. Seriously, to all of you who have thought this way - my family and I are seriously hurt by your remarks. Honestly, I really want sincere apologies from each and every one of you idiots!

But as of now, all I want to do is to fully recover. Cause my parents, my friends, my loved ones, or anybody that knows me - less worry, less sadness.

I would like to use vulgarities in the entry to release my anger for the people as I've described earlier, but I rather not. At least, not for now.

A note to these people: I have no reason to cheat any of you. If you choose not to believe me, and still think that I faked cancer(PFFFFT!) - that's all up to you. I didn't do anything wrong, and I don't see any need to explain myself to convince you. Stay in that little box of yours, and rot there for all I care. I'm too tired, and I rather save my energy to recuperate properly. So there!

All this drama makes me so grateful and glad that there are still good Samaritans out there who are willing to help me out. (I'm going to leave this to another entry, good people deserve a nice, long post about them all to themselves!)

***
I'm going to stop here for the moment. If I keep this entry too long, nobody would bother to read it.

I FIND IT EXCEPTIONALLY ANNOYING THAT PEOPLE STILL ASK ME QUESTIONS REPEATEDLY WHEN I HAVE ALREADY ANSWERED THEM IN MY BLOG.

FIRST, SOME OF YOU SAY THAT I'M CAUSING PEOPLE TO WORRY ABOUT MY CONDITION BY NOT UDPATING.

SO I UPDATED.

BUT THEN, THESE SAME PEOPLE JUST HAVE TO ASK ME THE SAME FREAKING QUESTIONS THAT I HAVE JUST ANSWERED ON MY BLOG!

TELL ME, WHAT IS THE POINT OF ME BLOGGING IF YOU AREN'T EVEN GOING TO READ IT? YET, YOU ALL ARE BEING SUCH HYPOCRITES FOR PESTERING ME TO UPDATE, UPDATE, UPDATE!

I am trying my best to rest more, to recover quickly from cancer. And this is what I get in return.

Oh gosh, is it that hard to get a little bit of understanding from people like them?

Again, I am grateful to those who do understand. Thank you, you and you!

I realised that I've just blogged these pent-up emotions I have been keeping to myself since the start of my transplant.

I do feel a little bit better, but there are still unsettled issues. I'll blog about them another time.

Meanwhile, I hope this entry is satisfying to everyone - both the good, and the bad.

Cheers!

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20:19
Monday, 17 October 2011
Bits and Pieces.

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.
Help me, please.

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15:49
Friday, 1 July 2011
here comes the hardest part.

I am not exaggerating, but my parents are draining their savings empty and spent pretty much every dollar, cent and dime just to fund for my treatments since July 2010.

It doesn't help that the current treatment I'm undergoing now, which is the stem cell transplant - is the most costly out of all of the medical procedures I've been through.

My parents are aware that I actually am desperate to start studying in college. So they still refuse to touch my college fund, unless it is the last final resort.

Friends, old and new...

This is a sincere plea for help from me,
on behalf of my immediate family members -
my parents and my elder brother.

We are really low on cash. I hate to have to ask for help, but seeing how tough it is for both my parents to pay for all those costly medical bills and my brother for being considerate to consider our spendings and tries to save as much as he can so he can relieve my parents of some burden. He's still studying in university, and the last thing I want to see that happens is my brother dropping out of his course just to help support me. I'm already robbed of my chance of an education, so why rob my brother of his?

At least, if I ever were to unfortunately die - my brother will have enough qualifications to find a better job and support my parents in the future.

At the very least, this is what everyone in my family deserves for taking such great care of me throughout my course of treatment. In fact, since I was born to be exact!

I was given a chance to live, yet it is not for me to choose how long I can live this life as my current identity. I have to say, I'm thankful for having the chance to be born as Leonie. Someone who isn't your typical ordinary person, yet still uniquely me - learning something new everyday and meeting new people; creating new experiences and memories for me.

I truly do not know how much longer my cancer journey is going to take. I don't know how many types of treatment I still have to face after this. I still have no idea how much longer I'm going to live.

Please spread the word around for me. If there is anything you need to know such as my bank account details, approximate cost of treatment, etc., feel free to inbox me through Facebook or leave me a comment on this blog. If you prefer to be kept anonymous, I will not publish your comment - but please leave me your email, contact number, Facebook profile or anything that will make it easier and convenient to discuss everything out.

You have my utmost, sincerest thanks.

Thank you for taking the time to read this entry, and thank you for spreading the word around.

I really hope to hear some good news soon. (':

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15:07
it's nowhere near over.

Hello readers.

I haven't been online for the past few days. I've been busy packing for my one-month stint in the hospital for my stem cell transplant. Today is only the third day, and things are not going so well as I thought they would hopefully go. Sigh.

I already felt homesick since day one, knowing it would be a long time before I get to see home again. It also didn't help at all that my supposed three-week stay here got extended to an entire month, as this detail got conveniently left out by my doctor. No thanks to him here! (The more sensible side of me know that the extra one-week stay is for observation purposes once all the necessary procedures are completed, but I'm currently feeling very stressed out, frustrated, angsty and whiny all at the same time, so do bear with me please.)

The first day wasn't too bad, until I found out I had two injections and six pills/tablets to swallow before I went to bed. One injection serves to thin my blood because as there is a risk of my blood clotting and causing complications during my high-dose chemotherapy sessions (to be done six days continuously, starting from yesterday onwards), another is a kind of vitamin, i.e. Vitamin B12. The former is a daily injection - but it cannot be injected into my body through my PICC line. It has to be done subcutaneously at my stomach. Trust me, I'm no big fan of needles at all.

Yesterday morning, I had to go through this contract/consent form that was penned out by a lawyer (another random fact courtesy of my doctor) and I started to feel depressed because of it. Secretly, I was also tearing up but of course I was not going to let my parents see that! Basically, it described the procedures of my stem cell transplant, the types of chemotherapy drugs administed to me throughout the course of this treatment, possible side effects (I felt like I wanted to just break down when I saw that one of it was death. Less than 10% of patients who had gone through with this treatment died. Who knows, I might be in that unlucky 10%? I already feel unlucky enough to be diagnosed with cancer, with no obvious sign of total recovery.), and what has to be done if so-and-so happens.

I felt like hope has really dimmed out for me. I am truly aware that there are kids, the elderly, or anybody out there that could be living a harder life than mine. I should be blessed for what I already have at the moment and how I managed to complete my basic education before moving on to this more complex and difficult part of my cancer journey.

I should be feeling lucky that I'm still alive.

I'mt not going to lie, nor am I going to make matters sound more dramatic than they already are - but it's the plain truth, things are getting very complicated regarding my condition.

Last year, my cancer was still considered under control. Now, it's getting more aggressive. I don't exactly know how to describe this to everyone, but since starting my second chemotherapy session in April - I can feel myself getting a whole lot better, then a whole lot worse. After each chemotherapy session (I had three, so far), I'll suffer from the side effects, then get better, and then when I go back to the hospital for my next check-up - the results of my blood tests show that my cancer cells have gone back up in high amounts. Before the results of the blood tests are out, I can already feel the cancer cells are growing again inside my body a few days prior to me going for my scheduled blood tests.

It scares me really that everything is so uncertain. It scares me that I could die and not wake up in this realm again, when I have so much left that isn't done. It scares me that this stem cell transplant isn't going to cure me 100%. It scares me that this transplant isn't the last of my treatment course. It scares me that I'm most probably going to need another six months to a year in getting rid of all of the cancers cells inside my body. It scares me that everything is so expensive, my parents are really financially burdened, and it pains me so badly that I'm unable to work, not even as a simple waitress or a dishwasher maybe to relieve them of this burden.

It saddens me that I haven't met up with my friends for a long time, then it scares me that my friends are eventually going to forget about an existence of an old friend named Leonie, whether I'm alive or dead. I do miss them so much, and it hurts to feel so left out from so many things, in terms of education, events, getting to know new friends, or just hanging out. The sad truth? Friends are just going to mourn about me for a while when I'm dead, and then move on with their individual lives. I know that wouldn't be the same for my family though, there is some comfort in that - but it saddens me again once more that they're the ones who are going to suffer from emotional and financial pain if I happen to not survive from this ordeal.

I am tearing up so badly from typing this post out, but my mum is nearby and I don't want her to see me cry.

I regret not taking my health too seriously, I was stupid for trying to complete all of my school assignments and stay up really late into the night and not getting enough rest, when I should have just given up and get punished by the teachers. Even though I'll get a bad name in school, at least there's a chance I'll be a healthier person than now and I get to enjoy life after high school. I regret not having enough fluids in my body, since I wasn't a big fan of drinking lots of water before. I regret for not treasuring my life before this, when now I'm just struggling to keep myself alive and well.

I'm getting tired from all of this cancer shit, I'm not going to deny. It has cost not only me, but also my family members and my closest of friends a lot. I'm not as strong as everybody thinks I am. I'm trying to be an inspiration to people, to let them know that their lives aren't bad at all compared to mine, to let them know not to take anything in their lives for granted. But it's getting hard to remain positive and optimistic.

I'm sorry, I do have my moments when I feel awful like this. Instead of criticising me and telling me off for these emotional breakdowns and giving some of you the impression that I'm being a weakling, like some of you unfortunately do - please, if you're truly a friend, I really need your continuous support, love, prayers and encouragement. You have my most sincerest thanks and no words can describe how grateful I am just to have all that from all of you.

I am going to feel extreme fatigue throughout my current treatment. I might be too tired to go online at all for the next month, or I might be able to go online once in a while, but I will not be able to respond to anyone if I get too tired. I'll be reading your comments, so do know that I appreciate them so much.

Till then, stay happy and healthy everyone. No matter how bad you think your life is, know that there is this blogger and cancer patient who has it worse than you, and you have no idea how much I want to live your life.

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17:06
Tuesday, 14 June 2011
changes.

Hello readers! I shall try not to type anything irrelevant and focus on just the events that occured since my last entry.

Firstly, I had a PICC line and CVC line inserted.

The former is done because:
  1. I require multiple blood and platelet transfusions due to my low blood counts caused by chemotherapy.
  2. I require multiple blood tests which needed blood to be drawn out quite frequently.
  3. It is needed for my bone marrow transplant. I'll have to undergo a high-dose chemotherapy to kill basically nearly every living cell in my body - both cancerous and non-cancerous cells.
  4. It will certainly make my life slightly easier, because then I won't need to have needles poked/inserted into me many times. With a low platelet count, my blood can't clot easily like an average healthy person, i.e. there's a possibility that I can literally bleed to death. Scarring will also be more serious, and both new scars and old take a much longer time to heal.
The latter is done because I need to have my stem cells extracted for harvesting for my bone marrow transplant. I went for one session yesterday, and another earlier in the morning. Hopefully I had enough stem cells collected, or I'll have to go for another session. It's quite a tiring procedure, because from how I see it - stem cell extraction works like kidney dialysis. How I would bluntly describe the process - many tubes are connected to my CVC line and to this machine, which takes my blood out and extracts my stem cells. This takes around three to four hours, maybe longer. Not something I would ever like to experience again, really.

Secondly, I have been in KL staying in the hospital for long periods of time. I can hardly remember how home in JB looks like, since I have been away so much. The moment I'm admitted, I never see the light of day(the view from the window doesn't count) till I'm discharged. And when I'm here, I normally have to stay for a minimum of five days. Go figure.

Thirdly, my side effects are really a killer this time. I'm not going to mention each and every one of them here, but I'll talk about the one that bugged me the most. I had this sore throat that was so severe, words like 'awful' and 'horrible' aren't enough to describe how bad it affected me. Something simple like swallowing became such a chore! I would equate the pain to having someone force a small sharp-edged rock down your throat. Now, imagine that kind of pain every time you have to swallow food, water and even just saliva. Not forgetting that I also had pills to take. The pain was really so bad, I tear up every time I had to swallow anything. It didn't help that I had ulcers all over my gums and tongue which conveniently multiplied the pain and discomfort of eating and drinking. Lesson learnt here - never take eating and drinking for granted. I feel lucky that I didn't need to be fed through a tube. So should all of you normal, healthy people!

Fourthly, I am recovering from a blood infection. It caused me to have a fever of the highest temperature yet - 39.8°C. I am very glad I am still sane enough to type this entry out.

Last but not least, I am proud to say that I am bald again. Like hey, which other girl you know is willing to go bald not once, but twice and had actually done it? The whole hair loss episode haunted me again shortly before me returning to KL for my third chemotherapy session. I thought it would be more practical to just shave all my hair off and spend my endurance in facing the gruelling side effects of treatment. My mum mentioned to me about getting me a wig a few times with my dad supporting the idea, but I declined. I mean, to invest in a good wig is quite pricey and my parents are already spending a whole lot of cash just to get me well and treated. I honestly don't want to add to their already existing burden because I'm insecure about my looks! I personally know that I will definitely rant about my insecurities here one day about how I currently look like, but I don't think that's going to be the main issue for now. And truthfully, it never will be.

*
I kept this blog locked for a few days because I wanted to make some minor changes to the layout and make it more reader-friendly. I blame fatigue for not letting me do it all in a few short hours, which is why it took me a couple of days to sort everything out. I'll add in new things here and there once in a while, so if you're not too busy with your current lives do feel free to drop by!

I hate to sound like a parrot, but to those who are truly concerned about me, have been leaving me really nice messages on Facebook and remembering me in their prayers - they have my sincerest thanks. I also apologise for not replying to everyone that contacted me. The people-pleaser part in me is nagging at me a lot, and I feel obliged to reply - which brings up this immense guilt in me every single day. I do feel bad for not responding right away and possibly making people worry, but I'm just not up to it with my current energy levels. It might be too much to ask, but I hope that everyone can try to understand this, forgive me for very late responses that may come months after you contacted me and not assume what you don't know. To be assured of that will seriously make me feel a lot better about myself and going through treatment won't be all that bad after all. (:

Cheers!

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17:13
Sunday, 24 April 2011
back with a vengeance!

Hello dear readers!

After two gruelling weeks, I am finally able to update everyone about what's going on in my once again chaotic battle against cancer.

Please click on the links provided if you need definitions of certain medical terms and maybe a clearer picture of what I'm trying to explain regarding my condition. (:

*
A fortnight ago, I found out that the right side of my abdomen had been feeling sore. The soreness was so bad, it made me lose sleep at night. I had this coughing fit which has been going on for a month, and to those who are aware of my condition - me coughing non-stop was the major symptom that led me to finding out I had cancer. I consumed three bottles of cough syrup and there was no sign of me recovering. My oncologist in Johor Bahru also diagnosed me with a severe case of pharyngitis. I also have frequent bouts of fever exceeding 38.0°C. According to my oncologist, other than the soreness I experienced - the other symptoms were most likely to be side effects from the 25 fractions of radiotherapy I went through.

I made many trips back to the hospital to see my oncologist as my symptoms were still there after being on constant oral medication for a month. Finally, when I brought up the topic of my soreness to my oncologist - he told me that he felt a ballotable mass somewhere near my right kidney. He advised my parents and I to bring forward my PET scan.

I went for the scan the very next day, and the results were..I wouldn't say shocking, but it's certainly not optimistic at all.

My parents and I found out from the radiologist that even though the original tumour that I had had shrunk tremendously from approximately 6cm to 1.3cm, it was still there. What's more, I have five new tumours in my body - two of them being really large tumours surrounding both my kidneys, and three more smaller ones that are in positions near my lumbar vertebrae. The smaller tumours that are affecting my backbone has caused my diaphragm to be slightly dysfunctional - hence me having slight breathing difficulties, causing the sore throat and the cough. My kidneys were still functioning normally, fortunately, so nobody suspected anything like this to happen.

Surprisingly, I didn't cry hearing all that. I surprised even myself when I still managed to speak optimistically about the whole situation. I didn't even tear up. Anybody would think that I might be too taken aback by the relapse of my cancer in just three short months, and had gone disturbingly positive in reaction to such major news. But really, I just couldn't cry. What I do know - I need to seek treatment immediately.

Right after I got the results of my scan, it's back to my oncologist's clinic - and he and my haematologist in Malacca both decided that I need to go for further treatment in KL.

On the 11th of April, my parents and I went to KL. I was admitted into the hospital on that day itself. I had my bone marrow cells extracted for a biopsy and the stem cells preserved for a bone marrow transplant. (I might blog about this process in a separate blog entry.)

The next morning, I started a new course of chemotherapy with stronger drugs than those used previously for my chemotherapy sessions in Malacca last year. My first session lasted for three days continuously. I managed to stay alert for the first day, but then I eventually felt extreme fatigue and constantly slept the hours away. I had steroids given through my IV drip so many times, I lost count. The only thing I know is that the steroids have this nauseating smell, and whenever it's given to me, my arm hurt because of the pressure in my vein. (I really hate steroids, but it's vital in my course of treatment, so I guess I just have to deal with it.)

Recuperating from this chemotherapy session was nearly like living hell to not just me, but also to both my parents. I felt tired all the time, and I constantly felt weak and exhausted. I didn't have the energy to walk, to move around, to even eat or drink anything. It didn't help that the side effects of chemotherapy made me feel even worse than ever. I lost my sense of taste, and my saliva tasted like vomit. I kid you not. Food tasted terrible, and drinking any form of liquids was torturous to me. Yet, I needed to eat because I'm on oral medication and I got underweight all of a sudden. I looked like an anorexic, and I could see my bones jutting out. My physical appearance really disturbed me, and for the first time in battling cancer - I really felt like I was in the depths of despair, and nobody could pull me out. And no, I'm really not exaggerating.

I was afraid that I might never recover from this ordeal.
I have this constant fear that if I kept on sleeping so much,
I might never wake up.
I was scared to die at such a young age,
when I hardly lived and I still have so much in life that I have yet to experience.
I thought I would never have the chance to continue my tertiary education.
I thought I would never be able to repay my family for taking care of me throughout my living on this Earth,
and everybody who have been so kind in aiding my parents and I in the journey of my recovery.
I thought that I would never have the chance to help people in need,
support worthy causes and give back to society.
I thought that I would never be able to grow up to be a successful and happy person, and pamper my parents in their old age.
I had so many negative thoughts,
and details of my possible funeral kept turning up in my head.


Thankfully, despite me still having some of those fears - I am recovering. I know it.

I just still need to keep fighting for my life. There may be times when I feel like giving up, but I definitely won't back out no matter what.

Especially with the fact that I have so much encouragement and support from all of you readers that are truly concerned about my plight! I appreciate the texts and supportive words on my Facebook wall; they really made me stronger and cemented my drive to continue fighting cancer and not let anybody down. I'll try my best to respond to everyone, but I just want to let everyone know - I truly appreciate every single wall post, every single text, every single blog entry, every single call, every single prayer. Words are seriously not enough to describe how loved I feel, and how thankful and grateful I am.

And also, thank you to everyone who remembered my birthday! I celebrated my 18th birthday with my parents. Nothing elaborate, just a simple day out in Malacca without a worry or care about any future ordeals I have to face. I'll also try to say my thank yous to everyone who wished me!

I do apologise to my friends who called me on my birthday, but I didn't answer any of your calls. For your information, another side effect from my recent chemotherapy session is that I now have partial hearing loss affecting both my ears. I was particularly extra deaf during my birthday, so I didn't answer any phone calls because I wouldn't be able to hear a word you say. In case you're wondering how severe this problem is to me, I can hardly hear myself talking to my parents or the doctor and have to resort to near-screams to be able to at least hear myself. Crossing roads or being at a car park is even worse - I cannot estimate the distance of vehicles from me. A car can just zoom from behind me, screeching tires and all, but I either wouldn't know there's a car speeding behind me or I still think the car is quite a distance away from me. Honestly, I nearly got knocked down by a few cars because of this problem...Thankfully, my parents now know better and they now have to hold my hand to ensure I don't just wander off and make myself a danger to..well, myself.

I made a joke that even if cancer and my treatment course won't kill me first, a car accident would. I don't think my parents found it very funny. Oh well, so much for being an optimist! Hahah.

I hope everybody is satisfied with this update, and I hope this entry can take some worries out of your mind. :D

Cheers, and to all my Christian friends - Happy Easter Sunday!

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14:06
Thursday, 17 March 2011
impatience.

This is me promising my readers that this entry will not be a depressing one. (:

So, it's already mid-March. Till today, I have done a couple of blood tests in Malacca. The results weren't very optimistic, but according to the doctor in Malacca - he said it was quite normal, as the increase of certain cells in my body were due to the side effects of radiotherapy. He said he will keep on monitoring my condition, and I'll be making another trip to Malacca next month for another blood test. This blood test will most probably be my last before my PET scan that is scheduled to be done on the 27th of April.

Two weeks ago, I caught the flu bug. Obviously, I fell sick. Naturally, my parents got very worried. I admit, I was equally as worried and afraid. Getting sick means that the size of the tumour can increase due to viral infection. Who knows? The cancer cells may spread to other parts of my body, like before, when it affected so many of my major internal organs. It took hours of chemotherapy to rid of all that. Mind you, one session of chemotherapy for me can take around eight to 10 hours. I went for six chemotherapy sessions, and trust me, it wasn't easy. Not one bit.

Thankfully, I think I have recovered from the flu. I still have this minor sore throat and cough which is really bugging me a lot.

Hello sore throat and cough, I have enough to deal with already with this stupid tumour inside of me. I don't need you to plague my already unhealthy self any further. Please go away and stop haunting me.

Hello cancer, can you please go away and disappear from my life already? You're causing me to be a burden to my family, and it makes me severely uncomfortable and unhappy to be like that. I want to be of use, and I hate feeling useless. I just want my life back, if you don't mind. Well, I know I mind.

Sincerely,
Leonie.

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14:20
Monday, 21 February 2011
i'm not okay.

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 want to be known for something I'm good at.

I try not to wallow in self-pity. I'm aware that this is exactly what I'm doing. But I can no longer keep these thoughts to myself.

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.

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13:06
Thursday, 30 December 2010
mutual understanding.

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,

"You're not a cancer patient.
So how can you ever understand the physical and emotional sufferings we go through?"

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.

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13:18
Saturday, 18 December 2010
it's a long road ahead.

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.

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15:28
Friday, 19 November 2010
friends like these.

Chiara, Nicole, Flora, Erica and Carinn, thank you so much for the handmade card. I appreciate the effort you guys put in to do this for me. I'm really touched by the gesture. Even my parents are, too. (:

Hopefully, once I get the green light from my doctor, I'll be free to hang out with all of you after SPM is done. ;)

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14:00
Tuesday, 16 November 2010
The Fear - Lily Allen.

In exactly another week's time, I shall be sitting for SPM.

To be honest, I'm feel honestly unprepared. I don't even feel confident in scoring for English, which I think is my best subject.

Every night has been filled with nightmares revolving around SPM. I don't know which is stressing me out more - the nightmares or SPM itself.

There isn't one day when I wouldn't find myself in tears because I can't solve some random sum or the fact that I'm worried that I'll blank out during SPM.

Readers, I'm not usually the kind of person who freaks out before sitting for an exam. Any exam, in fact.

I don't know why I have so many doubts about myself this time. I really don't.

My parents only expect me to pass all my subjects. I lost count the number of times they told me to just do my best, not stress myself out and not to worry about anything regarding me furthering my studies.

But I can't help it.

I badly want to do well to make my parents proud of me. I want to prove that a cancer patient like myself is still capable of achieving something. Even if I'm sick, it doesn't mean that I'm not capable of doing well.

It's tough, I have to admit. I missed out on the last few chapters of every subject in school and in tuition classes. I lack the practice and revision, as most of my time was spent recuperating and dealing with the side effects of chemotherapy.

Self-studying isn't so bad. But if there is something I don't understand or can't solve, I have nobody to turn to. I don't want to burden my peers and friends who are busy with their lives coping with schoolwork and tight schedules.

I'm fortunate to have a good friend, Gurpreet who helps me out here and there with my studies occasioanally. But I can't expect her to be there for me all the time with my rants and problems. I don't want to trouble her too much either.

And then, there are some people who are conveniently inconsiderate and happen to be very tactless as well. They ask me about my preparations for SPM, and I first thought they were nice to show concern on my studies despite my condition.

How wrong. I'm just a channel for them to rant about how unprepared they are, and they can go on for ages, I tell you.

And all it takes was me reassuring them that they will certainly do better than me because I have been spending my time at home coping with both cancer and my studies while they have been attending school and tuition classes. The conversation ends almost immediately.

Bah, it's sickening to see people showing their real colours like that to me. I'll just let them live in their own imaginary world where everything goes their way while I stick to my principles in reality.

Meanwhile, my PET scan is rescheduled to the 10th of December - a day after my last paper. The following Monday will be spent to a trip to Malacca. I pray that all goes well.

Cheers.

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14:06
Saturday, 30 October 2010
where's the finishing line?

I'll be leaving for Malacca again tomorrow. I really hope that Monday will be my last visit to the hospital for chemotherapy. Sure, I'll be making occasional trips there for checkups. But honestly, like how I'd been telling my close friends - I really can't wait to get this cancer shit over and done with.

Five months of my precious final year in high school was and still is being spent self-quarantined at home. I wouldn't call myself a social butterfly, but I enjoy interacting with different people. Going to school and attending tuition classes allow me to do so. Honestly, I'm not the kind of person who enjoys being cooped up at home so much.

Sure, there are the pros and cons. I bonded with my family members a lot since me getting to know I have cancer, especially my mum. Everybody is being very nice and patient with me. No matter how moody, cranky or worried they are, they will immediately put a smile on their faces when it comes to talking to me and reassuring me that I am indeed going to fully recover from lymphoma. I appreciate that a lot. I am truly blessed to have such awesome family members, even if they have their flaws. Hey, we're all perfectly imperfect. Beyond those imperfections, there are that little bit of themselves which makes them uniquely them.

It's already the 30th of October. Starting from November onwards, I am going to take a break from the online world and focus on doing well for SPM. Of course, I'm aiming for straight A's. It's the least I can do to please my parents and make them proud of me. Not forgetting some of my schoolteachers who believe in my abilities to score well in SPM. Still, I have to take my health into consideration. Definitely, I'll do my best in the exams. The results? I'll just have to hope that the examiners who are marking my papers will be in a tremendously good mood and be more lenient with whatever answers I can come up with then.

After the first week of SPM, I'm due for a PET scan. That scan will determine whether I have to go back for more chemotherapy sessions or whether I'm cancer-free or not. Who doesn't hope for the latter?

I sincerely hope that this journey of mine can come to an end really soon. It hasn't been easy, but I'm glad that I'd managed to make it this far.

Cheers!

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18:46
Saturday, 16 October 2010
It's Not Easy To Be Me - Five For Fighting.

Being a cancer patient now, especially at this particular age - I honestly regret the past me. Me who did not understand the ups and downs of an individual who has cancer.

I read many newspaper articles over the years about cancer patients and survivors of different ages, telling their stories. I have seen charity shows on television, seeking funds to help the needy. All of them have their problems and difficulties.

As part of an audience, their stories can impact your lives. You can either choose to help them or people in similar situations, or not give a damn at all.

I was one of the people who watch and read their stories. Then, I feel bad because I'm not able to do much to help them. Next, I'll remind myself of one of my personal vows to make sure that I give back to society - financially when I have a stable income, physically and emotionally as a girl who has been blessed enough compared to how life has treated them. Finally, I'll say a silent prayer, thanking the Creator for my current life. The cycle repeats itself over and over.

So, when cancer hit me, it made me grow up really quickly. I learnt life lessons in a matter of days, months even that might take others nearly a lifetime to learn. Maybe never at all.

As much as people claim to understand my situation or my family's, in the end, it's really up to my own willpower to fight this annoying shit called lymphoma. The support, encouragement, prayers and well-wishes I have been getting all this while from my family, relatives, friends, teachers, tuition teachers, acquaintances and even strangers - they sure make me stronger, and their good intentions remind me of a very solid reason to fight on and get cancer over and done with.

Hey! I'm still seventeen. There are so many things I want to do - things that I'm passionate about, ambitions to achieve, fears to conquer, and of course - to enjoy the simplicity of joy and happiness.

There was a possibility that lymphoma could have taken my life away. There was a possibility that my parents would lose a daughter. My brother, a sister. My buddies, a friend. My teachers, a student. The people who know me, a familiar face. And the list goes on and on.

I took a lot of things for granted before. Funny how you only start to appreciate someone or something only when they are gone.

Knowing me, I put a lot of unnecessary pressure on myself. Hence, as of the 5th of July this year, my new motto in life is to definitely stop and smell the roses. I think all of us should, too.

Sometimes, I wish I could live a simple village life, where materialism hardly exists and activities like catching fish in rivers that are hardly polluted, climbing up trees and simple games are capable of bringing smiles to faces. Where the womenfolk do their household chores together, and hear them chattering away from matters ranging from the day's weather or the neighbour's daughter getting married off to some wealthy man. A place where the hustle and bustle of city life and its complications would not turn most of us into schemers, liars and betrayers.

With the aforementioned statement, I think I would like to experience a homestay programme. And of course, I want to go backpacking and explore outside Malaysia. Open up my eyes more, and see the beauty of simple, everyday matters in lands of rich cultures and traditions, unique and special in their own ways.

I know in everyday blog posts and conversations, I don't sound that deep.

Honestly, thoughts and opinions like these are what my brain processes the most.

I think last-minute studying for SPM is also playing a part in why I'm blogging about matters like these.

Cheers to all!

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16:16
Friday, 8 October 2010
thank you, Sister.

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!

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19:08
Tuesday, 21 September 2010
rollercoaster rides.

I have been an ungrateful brat for the past two months plus.

Let me start from the beginning as to why I said so of myself.

When we received the films from my CT scan, my parents and I went to see the doctor right away. As he was comparing the films from my previous scans and my most recent one, I realised that he didn't talked about the size of my tumour first.

Instead, he was mentioning that the cancer cells in my pancreas, liver and both my kidneys have been completely resolved.

While my parents looked absolutely relieved, I was in this state of confusion.

Why in the world is the doctor talking about three organs that is not really relevant to my condition?

So, after the doctor finished explaining the comparisons, I asked him what seemed to be a silly question.

"Doctor, what has my pancreas, liver and my kidneys have to do with my condition?"

Thinking back, I can laugh at how cute I was then.

My whole family assumed that I already knew that my cancer cells had already spread to my pancreas, liver and kidneys. That was in the report from my second CT scan dated the 16th of July. Back then, I was kind of busy recovering from my surgery, so I kind of forgot that there will be a report from that scan. I just found out about the report's contents yesterday after seeing the doctor.

To think that I blogged about how I was on this very fine line between life and death before this.

My mother said there is no point in letting me know anyway. She rather keep me worry-free for two months than to constantly think about my condition. I feel bad that my parents and brother have been worrying about me so much without me realising how major my condition was. Now I understand why my parents have been so reluctant to let me go out of the house and having guests to come over. I owe them a sincere apology, and a big hearty thank you.

My doctor said I was being 'protected'. Oh well. I'll take that.

I'm still in shock over this piece of news. But I'm glad that the cancer cells in said three organs are resolved.

My tumour which was measured to an approximate 11cm from before has reduced to 6cm. Hopefully after two more chemotherapy sessions, the PET scan will show me the results that I want to hear and know. I'm completely lymphoma-free then.

Yesterday's chemo session was tough. I experienced nausea the whole day, and I vomited twice. Sheesh. I'm really glad that's over.

Now, it's back to the usual routine of consuming a variety of medicine.

My doctor told me to study hard for my upcoming SPM examinations. He has confidence I will be able to sit for SPM this year. Sounds good to me! He also said that I'll be able to go for crazy rollercoaster rides after I'm completely cured from this condition. Anna and Jia Ying, this means our trip to Singapore's Universal Studios sounds very possible and relevant after SPM. ;)

And yes, I owe Ming Wei an email. I'm really sorry! My second email account has been problematic recently, so I can't reply just yet. It's been two weeks now. Oh gosh! Please forgive me! I hope you're doing fine! (:

Till the next entry, cheers!

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22:54
Saturday, 18 September 2010
Stayin' Alive - Bee Gees.

-Past and Present, ©KrnBrdMnNix.-

Up till this very second typing this entry out, I'm lucky that I'm still alive and well.

When I just found out I had cancer two months ago, a lot of people made the effort to contact me on Facebook and through calls and text messages to convey their well-wishes, support and encouragement for me. Close friends, friends, relatives, teachers, tutors - it doesn't matter who they are, I'm grateful and thankful for everything they've done for me.

There was a period of time when I was a mini celebrity among these people. I got a lot of attention, whether I liked it or not.

And then I found out something about a particular someone I personally know.

Said someone really loves attention. Said someone will do nearly everything and anything that's not against the rules or the law to attract attention. Said someone is a very loud person.

Nah, there's nothing wrong with all of those qualities about her, really. Said someone is quite likeable, and has many friends. Maybe it's just me, and I choose to be not that close to said someone.

I don't really talk to said someone unless completely necessary. I rather mind my own business. I don't dislike her, but said someone's presence makes me feel very uncomfortable.

Whenever I'm in situations that causes the spotlight to be on me, said someone will never fail to stare at me with 'the look'. I find it very difficult to explain 'the look' to my readers here, hence me calling the way said someone stares at me - 'the look'. It's as if said someone is very displeased that I'm gaining all this attention, even if it's just something momentary.

At first, I thought it was just me. Maybe I was just being too sensitive, or I was thinking too much into it.

After years of observation and confirmation from a close friend, I realised that all my thoughts and opinions about said someone were unfortunately true.

And finally, here comes the worst part.

Said someone actually loves attention so much, said someone wants to actually have cancer for all the attention said someone can get from it.

I was shocked. I was amazed. After the fact had fully sunk in, I couldn't help but feel disgusted at the same time as well.

Well, said someone isn't that active in the online community. But here's a message for that said someone.

You really have no idea what you're asking for. It's easy for healthy and cancer-free people to say that people who have cancer just have to undergo radiotherapy and chemotherapy. They're just words to some people.

Going for radiotherapy or/and chemotherapy isn't as simple as one may think. I can't say much about radiotherapy, but I can tell you, chemotherapy literally poisons the body. Chemotherapy kills both cancerous and non-cancerous cells. Chemotherapy has many side-effects, and can affect an individual during or/and after treatment. Side-effects include hair loss, mood swings, stomachaches, headaches, blurred vision, and nausea. There's more. Seriously.

You aren't encouraged to go out often because you have literally zero immunity. You have a high risk of falling sick easily. And if you do fall sick, the consequences are ten times worse than when an average person falls sick. It's because your immune system is nearly non-existent. You will not be capable of fighting viruses, germs and bacteria in/on your body like before.

You'll have scans to go for. You'll have needles constantly being poked into you. You'll have to deal with a strict diet. You'll have your blood repeatedly taken to check on the number of white blood cells you have. You'll feel tired far too easily, and too often. Your usual lifestyle before having cancer has to undergo a 360 degree turn.

Treatment and hospital stays don't come in cheap. Will it make you feel good knowing that your medical condition may be burdening your parents? Having your parents and family members adjusting their lifestyles to suit your needs? The worry and fear you have to put them through?

Seriously, what in the world were you thinking to even harbour the thought to have cancer just for the sake of attention?

When I found out I have cancer and knowing that there is this pretty large tumour situated right between my lungs and in front of my heart, pressing against my superior vena cava, it felt like I was standing on this thin line between life and death.

If I were to find out about my condition much later, I can't even bear to think of what might happen.

Problems that seemed so major before, actually seems trivial now, compared to everything I have been through. For the record, I went for a surgery before, was in a coma and even was sent to the ICU for that. I have to say, I'm proud to have survived all that. But of course, it would have been better if it wasn't necessary for me to endure procedures like that.

The moral of the story? Do appreciate your life as who you are now. Appreciate every single moment of your life. There are bound to be both good and bad times. You can't expect life to go your way every time.

Cheers!

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