Tuesday, 25 October 2011
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,
"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:
- 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.
- 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.
- More vomiting...
- 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.
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.
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 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.
0 comment(s):Post a Comment
Thursday, 20 October 2011
Thursday, 20 October 2011
The Truth, and Nothing But the Truth.
Edits are going on in this cancer blog of mine. I have added another page, and it's mainly about my treatment course since the start of my cancer journey. I hope I didn't miss any important details, but it's certainly full of just that - details. To those of you who are new here, or would like to know of what I have been going through - more precise information is available here.
0 comment(s):Post a Comment
Wednesday, 19 October 2011
Wednesday, 19 October 2011
An Odd Thing Called Fame.
It's not easy moderating so many comments. I wonder how famous bloggers handle their fans/haters' comments.
Hopefully, I didn't accidentally publish a comment that was not meant to be published; the people who wanted to be kept anonymous or posted their contact details.
There were one or two comments that had contact numbers. Even though it wasn't mentioned, but I didn't publish those either. I don't think they will appreciate prank calls or having their contact numbers exposed. From personal experience, I know I don't.
I think I will dedicate an entire blog entry to replying these comments.
Meanwhile, I will do my best to maintain this blogging spirit and update as often as possible about exactly what I had been through to those of you who frequently ask.
Also, I added a new page for this blog. If you look beneath my blog banner and next to the word 'Home', I dedicated my 'Inspiration' page to this amazing individual. Personally, I really hope that any one of you readers will take some time off to read about her. She's more amazing and tougher than me, and ever will be.
2 comment(s):Post a Comment
Monday, 17 October 2011
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.)
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
3 comment(s):Post a Comment