Halfway through

It's day 44 post transplant (if i'm not wrong).

The hospital has been granting me home leave. It's definitely better than staying in the hospital and doing nothing at all. Now, every 2 days, I just have to go to the bed, get the anti-fungal IV, or maybe some replacements and then I can go home for the next 2 days. My liver GVHD is getting better but because I'm still on a 5-pill steroid so I think they need to taper down some more before discharging me. At least I'd like to think so.

The steroids make my appetite go crazy but at least I get to eat. During those 'dark' times, I didnt even want to smell food.

Staying with my in-laws have been great so far. Abah is really a great cook. His cooking always seem to make me go hungry. The smell! I can see why Firdaus gained weight so much. I think I will too. Mak has been great. I feel like such a lazy daughter in law coz i hardly do anything AT ALL. Its like, all I do is seep in the aircon. It makes me uncomfortable sometimes. I can help with simple2 stuff like wash dishes and clean up after the room but I can't really clean up like vacuum or what. I feel so lacking but I'm glad that she understands a lot.

So that's the update for now. Back to the hospital at 7am tmr.

The Final Step

In hospital again, since 31st May.

Chemo - done
Radiation - done

Left with pluck insertion on my neck and then the transplant tmr. Ibuk is harvesting right now.

I think people are generally afraid of things they do not know. And i dont know how this transplant is going to be like. Its nerve-wrecking. I don't want to have fever. I basically abhorr & want to get far away from fever as possible.

And then there is GVHD - Graft Vs Host Disease. I'm plucking every bit of courage I have for this one.

Ya Allah, sesunggahnya semua penyakit datang dariMu dan jugak ditarik semula olehMu. Bantu lah hambaMu ini Ya Allah..

Not As Strong

I got discharged from hospital yesterday.

Apparently things i do now are getting strenuous. Sit too long and my back aches. Standing and cooking too long also back aches.

The worst is sitting on the floor and trying to get up. I feel like my legs could give way anytime.

Sigh. That's me. I'm trying to enjoy myself as much as i can away from the hospital. Even if its just staying home.

Hospital Again

It's the 6th of May.
Which means that I have been hospitalised for about 16 days.
I still have about 5-6 days left to be discharged.

It all started on 21st April when i started to have pain on my neck, and suddenly that morning, my fever just kept going up and up. Went to A&E and got admitted for neutropenic fever.

It's basically because I went for chemo and that my Neutrophil counts are low, causing me to have fever. In this case, I had tonsilities and there was bacteria running in my blood.

I was at Ward 8A at Kent Ridge Wing. It was those single bed ward. My fever was around 38-40 degrees for many days. My sanity depended on paracetamol a lot. I puked a lot too, and there was a lot of phlegm due to the tonsilities.

I think it lasted for about a week or so.

After they injected the white blood boosters, I got better and was tranferred to ward 56. Then the doctors were saying that i looked better now and said that i could probably go back home on Tuesday, 3rd May. Then the next one was saying i could potentially go back home.

So on Wednesday, i cried like shit wanting to go back home. They kept on saying that they need to observe another 1-2 days blah3. But in actual fact, it's longer than that. The pregnant doctor came in to talk to me and said that i still have bacteria in my blood and that i need to finish the whole course of antibiotics, which was scheduled for 14 days.

And i still have about 7 days left. LIKE, WTF. What's with all the hope of going back and all that when i still have 7 FREAKING MORE DAYS LEFT.

So okay, i accepted.

Then the next day, the nurses were talking about de-isolating me. Another sucky news.

1) If i am not isolated, i might catch whatever bug there is outside, and then repeat the process of falling sick blah3.

2) My husband cannot accompany me if i am at a 6 bedder room. He can stay with me if i am isolated. At least i wont be so alone.

Sigh.

So then the Ward Sister was saying currently they dont have a bed outside. And as per hospital policy, if my counts are okay, I have to make way for other neutropenic patients to stay in the isolation room.

Fine. Not that i have a choice anyway. Not even for 1 week.
So okay, whatever. Just waiting for time to move out from here.

This morning the doctor was saying that my white blood count went down, again.

So, we'll see then. See whether i will continue staying here or move out.
So sian you know.

Now, the plan is to stay here till Wednesday or Thursday next week.
Then go home for about a week, then report back to hospital for the final step.

Bone Marrow Aspiration.
Chemo
Radiotherapy
Stem Cell Transplant.


I know i should look forward to getting better.
But it's not gonna be easy.
I'm not looking forward to all the side effects especially the FEVER.
I seriously have grown a phobia out of fever.

This year, cannot puasa.
I will probably be spending Hari Raya in the hospital too.
So sad.

I'll probably be out end of July.
After that I'll be staying with the In-Laws.
I think that's the best option for now. They are at home most of the time and they cook everyday.
And the bedroom got aircon.

So all i need to do is recover.

Well, that's the plan for now.

Rantings

So weird that as you grow older, you have lesser drama in your life to rant about.

At least for me that is. Like back when I was younger, I talked about every single thing about my life. Family, part time work, friends, outings and all.

But now, I can't even think of what to blog. Even if I'm not in hospital, just my regular life, i wouldnt know what to type.

I should give it a shot. Blogging helps kill time now that I'm in hospital.

Okay, so now since I have shifted to Compassvale, It's very far away from my workplace and my parents' place. It's nearer to my Parents & Brother in Law. I have always wanted to stay at Sengkang anyway.

But yeah, on days when I went to work, i had to wake up at 5AM. And get out of the house by 6.15 MAX if not i'll be late. I've to take bus 83 to Punggol Rd, about 2 stops away and then change to 161. It takes about 25 mins to reach Woodlands and then I take the train to Pioneer then transfer to 185/502 to my work place. It's about 1.5hrs travelling time.

But what I don't like about staying there is that there is no good food around. Sigh. I miss Jurong.

Sometimes i'll ask my mum to go with me to Geylang. But i pity her that she has to send me back and then go back home at Jurong. Haiz.

Anyway, so much for rants. I'm gonna have my last chemo later at 3am. Ya Allah, pls pls pls protect me from the fever. I want to go home tmr.

Chemo Cycle 2

I'm on to my 5th and final day of my consolidation chemotherapy.

It is not as bad as the first one. I was in the hospital from 02.02.16-28.03.2016. - exclude 4 days i was granted home leave. That was almost 2 months of hospitalisation. 1.5 months of being in cold isolation room.

Ohh how i suffered. Really. It was the toughest phase in my life ever. The chemo side effects played such a big part. There was nausea, vomitting, ulcer, diarrhoea, no appetite and the worst of it all, fever.

When someone with leukemia receives chemotherapy in the induction phase, we lose our good blood cells + the cancer cells. Therefore immune system = 0. So i couldnt go out of the isolation room.

And maybe i was in an aircon room so when i had fever, the cold was magnified. I started shivering. I had fever for like 3 times a day. I had to use up to 7 blankets on me till i suffocated for a bit.

There was once when my fever went up to 40°C. That was the worst. Thanks to Allah, i actually called Hafiz to ask him to come over as soon as possible because i was alone and i was seriously feeling cold. When he got to the room, i was having the worst kind of cold there was and cried so hard. That's when the nurse took my temperature and it was 40°. They did so many things. Antibiotics, hot pack, hot water bottle, layers and layers of blankets. I can't rmb much then I was too weak. They were scurrying in and out to help me with the fever. I was so thankful that they managed to reduce the fever and stop the shivering.

My appetite was the worst then. I couldn't even smell food, let alone eat. I could only manage cream crackers and milo on most days. I lost a total of 12Kgs.

And last but not least.

Of course i lost my hair. I cried. I've never seen myself botak before. Now i think i'm quite used to it.

Well, for memories' sake. I'm gonna upload photos here. I dont find them embarassing or anything. Cancer is real. It is a battle. To upload this photos mean that i am fighting this battle.

I am very thankful. Allah gave me this sickness to show me the way to Him again. On days when i am totally alone, He was The One who heard my crying and saw my tears. I know that I am not alone.

Blood Cancer.

After the home leave, i returned to the hospital on my own. My husband just started his first day of working in a new company.

So that morning, the doctor came in. He said the results for the blood had returned. He told me that I had Leukemia, which is a form of Blood Cancer.

I didnt cry. I didnt know what to think. He looked at me apologetically. It was a lot to absorbed.

But of course when i told my parents, i cried. That feeling of being apologetic to them that i had to tell them the news that i have cancer.

The next day, the family, and the inlaws came. The doctor had wanted to hold a family conference for them to explain what was going on.

1) I have Acute Myeloid Leukemia.
2) I have to go through chemotherapy.
3) I will lose all my blood cells during chemo.
4) I will be vulnerable because i wont have my white blood cells. So risk of infection is high.
5) I will be very weak.
6) I will be in and out of hospital for 6mths to 1 year.
7) Cannot work.
8) lose weight, botak hair etc..
9) no appetite to eat + constant nauseus feeling
10) many restrictions on food.

Many points were being pushed across by the doctor.

So since Monday, i have been on chemotherapy. It sucks big time. I feel feverish and i have chills from time to time.

I'm on my 3rd day. I am starting to have that nauseus feeling.

Ya Allah.. pls help me.

Blood Disorder

I have always known that I have low blood platelets. I didnt take it very seriously. Along the way, i just lived my life.

It was only that i had multiple abcess that i went to NTFGH to remove them. But it wasnt quite as easy as my platelets were low. So they refered me to Dr Tan, who i had follow up appointments with her until i decided i didnt want to go coz it was expensive (coz i wasnt under CSC Card anymore)

So i went to see Dr Tan, got my blood drawn out. The next day, i received a call from her to report to A&E because the way she saw it, my blood was very abnormal. It was lower definitely but this time round, it is affecting my white blood cells as well.

So, there we were husband & wife, stumped at what to do. We cried for a good 15 mins. Called ayah. He said to go.

So we went. Got admitted. Drs and nurses took many bottles of blood. And they decided i should do bone marrow biopsy.

It was the shittest painfulest pain i have ever felt in my life. The worst part is when even their senior dr found it hard to poke into my bone marrow. They had to do it like 7 times. And the sucking part is damn painful. Goodness. This could be 1 of phobias.

And 2 days later, it is still painful to sit for too long and certain parts of my right thigh and my tummy feels painful after the biopsy.

So i'm now on homeleave. Since they have nth for me for the next few days while waiting for the results. I have to be back in the ward at 8am.

Feels good to be back home.

This makes me wonder so much about being pregnant and having a child. This is probably the reason why Allah didnt grant me a child. I think its for the better. But of course, i feel very sad that my husband cannot get a child of his own. I feel so sorry that i am lacking like this. My husband deserves to have his own children. But if i get pregnant, it will endanger my life and the baby too. The baby might inherit my blood problems. 😢

Allah knows best. I will leave it to Him to decide. For now, pls give me the strength that i need.

Moving out

It has been more than a week since we moved out from my parents place into our own place.

The first few nights were bad. I felt so homesick - i still do actually but not as bad.

I guess i's because I'm so used to a house where there were so many people and that it was always so loud and lively. When we shifted, there were only both of us, it felt so quiet. It wasnt something we both were used to.

We both talked it out and found that we actually like a place where there were uncles and aunties around as they make an area more crowded and cheery.

Sengkang has been like a ghost town. I dont know if it's because Compass Point is close or something but there is totally no crowd at the interchange - something we're not used to see because JEI has always been so crowded!

We havent really met our neighbours yet. For me at least, since i go out in the wee hours in the morning and reach home only at 7.30.

We havent explore our place much. Havent had the time to do it as we had busy weekends and busy upcoming ones as well.

Till then, we'll slowly adapt here.. it'll definitely take some time getting used to.

Privacy and Moving Forward

It's weird how we portray our lives on the internet for people to read.

but i guess, blogging about your personal things can really connect people to you about how you feel at a certain point of time.

anyway, i think blogging really helps me with my inner thoughts and i feel calmer after i rant about it at my blog. but of course, they're just shallow things. i normally post more in depth feelings at my private blog which only i can view.

i like to post happy and real thoughts on my Facebook. I guess, after knowing the husband, seeing that he kept saying that people don't need to know about us as long as we know about us, makes me rethink about uploading certain things.

Moving Forward.

We collected our house keys on the 16th September 2015.
Such a memorable date. I got my wrist injured on the 16th September 2006.

Anyways,

We're not doing anything much, probably alot of DIY-ing.
We've done our kitchen and it looks nice!

I really love the colour that we chose. And also that it is really simple and not taking up a lot of space in the kitchen. That's what me and the husband wanted, simple.

I need to take more photos. heh.

So we're slowly building up our house with the help of our families. We're also grateful to have met Uncle Auyong, who did our reno. He has been so kind, helpful and generous is helping us build up our house. He's 71 years old. Really, really grateful to him.

It's now another phase in our lives that we are really looking forward to.

Looking back,

We first met on March 2009.

We got engaged on March 2012. That was nothing much. Even though people said our engagement ceremony was grand, most of the items are what we already have and we were making use of that. My Parents-in-law are wedding caterers. It has its perks during our own ceremony.

We got married on November 2014. That was the biggest step with so much to save up for and so much spending done.

We got our house September 2015. Money involved not as much as the wedding but still, it will be good if we had time to continue saving for the renovation.

Moving in? Soon i guess. heh.

Such As.. Going for Holidays.

First penned: 18/03/2015

Again, I think it's been more than a month since i last updated?

Anyways,

We're planning a trip to Bangkok after Abang Fadzli's wedding in June. It will be a multi-city holiday again. Hee.

The wedding will be at Kedah, Malaysia, somewhere i have never been, except for taking the ferry to Langkawi. I think we wont go around much since it's the wedding anyway. Still, to go to a place i've never been to is still exciting.

The following day after the wedding, we'll be going to BANGKOK!

But first, from Kedah, we will need to go to Hat Yai Airport to take flight to Bangkok.

I AM SO EXCITED. I have always been to Malaysia-Indonesia trips but never any other country!
Going to Bangkok should be nice. Been hearing so much about the place.

I am doing so much research on Bangkok. Reason being, I don't want to be cheated like how we were cheated in Bandung.

Let's just talk about the Bandung-Bali trip since we are on the topic of Holidays.

We went for our honeymoon immediately after the wedding - the next morning!
Our flight was at 7.40 am if  I'm not wrong. We were at the airport at 5am like that, which meant we left home at about 4.30 am. I had only had a few hours sleep while the husband slept like a log.

I was so nervous. We have never gone for a trip together without our family before. This was really the first time - EVER. It was also Hafiz's 2nd flight after donkey years. We were THAT nervous but Alhamdulillah the flight was smooth and it was just a short flight.

BUT - we landed at Jakarta instead of Bandung instead. WHY?

Apparently, we booked out flight early back in May 2014 because we were way excited for the Honeymoon - more so that our wedding. Heh.. So we booked from Singapore to Bandung straight via Tigerair.

Then back in September 2014 (i think), they emailed to inform that the were rescheduling the flight. So I was like, okay lah, reschedule still on the same day. Then in October, they emailed to inform that they are discontinuing that flight. LIKE WTF. 1 month before the flight.

I was so pissed lah. Then the whole story of waiting for the refund and all. Peh leceh. Then of course, we had to find another flight for that day. So i checked Airasia & Jetstar.

So Airasia travels to Bandung straight, but the price was a little bit more expensive. And so, i settled for Jetstar to Jakarta instead and then from Jakarta, we shall make our way to Bandung. It'll probably take about 2-3 hours.

BUT NO.

It took about 4 hours plus all the jams! OMG. I slept and woke up about twice before reaching Bandung. Even though it took that long, we managed to get some nice architectural buildings in Jakarta.

We reached Bandung only to find out, we didnt know where we will be alighting. The nice driver, he dropped us off at the Blue Bird taxi stand, and we made our way to the hotel.

I was really cranky by the time we checked in to the hotel but the hotel receptionist was so friendly and nice. I guess i was skeptical about the hotel after going through the long journey. Anyway, we stayed at The Papandayan Hotel, and it looked like this:

The view is not much though, but I love how i can see the sky so clearly from the window.

Anyway, we were so shagged from the long trip that we just ordered room service.

The carbonara was delicious!

We were so tired that we fell asleep right after that and only woke up around 6. Had to drag ourselves out because of the fatigue. So we went out, and it was so chilly. We wanted to go out for dinner but didnt know where to go. In the end, we decided to go to Trans Studio Mall. Didnt want to take cab because dunno where the cabs are so thought of walking there.

Then an angkot stopped beside us, so Hafiz asked if he go to Trans Studio Mall, which he did! It took about 5-10 mins to reach. It felt further though if we walked. So, went to Trans Studio Mall and first thing we did was find food! We settled for a Japanese restaurant. Apparently most of the restaurants there are Halal.

It was SUPER DELICIOUS LAHHHH. The bill came up to Rp 200,000 ++ roughly aroud $20 plus? Super cheap considering we bought sashimi and all. After that we shopped for a bit and head back by Taxi. In Trans Studio Mall, they had a surchange. I forgot how much it was.

The next day, we had breakfast at the hotel. It was AWESOME. I guess Bandung is food haven for us.

Those Hotdogs. Those ketat Hotdogs. LOVE.

After breakfast, we head out to Trans Studio, by Angkot.

And so, when we got down from Angkot, two ladies appeared. 1 was "blind" and the other was quite alright. They asked for some money, so we gave Rp 20,000 (about $2-$3), and after that, was unbelievable. The "blind" lady walked so normally and gelek-ed her way out while laughing with her friend. I was so pissed lah.

Anyway, went in to Trans Studio.

*insert: continued on 28/08/2015

Took almost half a year to finish one long blog post about our Honeymoon. Heh. Anyways,

So we went to Trans Studio Mall first. It was fun the first time round when I went there a few years ago. Apparently, some of the attractions were closed. Especially that Giant Swing ride! Man.. that was the highlight! Anyways, few pictures of the attractions:

We stayed for only 3 hours and we left after that to look for more food. We went to a Kafe Betawi and got these:

It wasn't really that nice. So we hopped to another place, and it's cafe! So happy.. Kat Singapore too crowded.

The cafe was awesome!

That carbonara pizza was THE BOMB.

So we went back after doing a little shopping. At the hotel, we bumped into the receptionist. He was nice to recommend us the hotel tour. It costs Rp 750,000. So i thought it was alright for a 12 hour today.

The next day after the AWESOME breakfast,

we set on our journey. Like, super excited to explore another country, right. Amateur travellers mah.
See that excited face.

So first, we went to change some money. I think we changed about $400.

First stop was Tangkuban Perahu. I was excited to go there since, it's a volcano after all. I have never been on a volcano. But to enter the place was Rp 200,000 per person

That's like $20!

Ok nevermind. Just Pay. Skali when were on top, the driver, hooked us up with a Tour Guide. So at first, we thought okay la.. He took a lot of nice photos for us.

Then he asked if we wanted to follow the tour. 1 hour was Rp 300,000! So i was like, ok lah. First time what. So we went down. Took more photos.

And suddenly, 6 men started to follow us. The guide said something, which we couldn't make out because of his accent.

As we went along the trail, i got more and more tired. At the very last part of the trail, I FELL.
OMG IT HURTS SO BAD.

I couldn't really walk and i tried to force my way down.

And THEN,

Shit started to happen. When we were at the Kawah,the 6 men who followed us started to take out their things to sell. And, their items are just normal souvenirs but they totally jack up the price!

We were so scared if anything else were going to happen to us. So we bought their things, which probably amount to almost all the money that we changed!

Dah tu, they left us with the guide. Obviously, i couldn't walk, So there was an ojek service. And that too, cost like Rp 400,000.

WTF right? Daylight robbery seh. Since Hafiz saw that i couldn't walk much, he just took it. And it was barely a 5 mins ride! WTF!!

And the tour guide, said we incurred another hour. which was another Rp300,000 and also, his tip. Hafiz didn't tip him very well considering all that happened. We left, and told the driver to bring us back to the hotel.

SUCH HORROR! 1st place that we went was such a bad experience and totally wiped out all our money! Typing this 9 monthts later still angers me.

We have no money left on hand to even continue the rest of the journey, plus, i sprained my ankle bad!

So we spent the rest of the time, in the hotel, ordering Room Service AGAIN.

The hotel staff were really nice. While chit-chatting with us, they found out that we were on Honeymoon. They sent us a cake!

The next day, was the last day at Bandung.

We got the hotel airport shuttle to send us to Bandara Husein Sasatranegara. The moment we got off that car, we were on a war with people asking to change money and whatnot. Since we were early for our flight, we just sat at a nearby cafe for about an hour.

After checking in, we waited again for another 3 hours as the weather was pretty bad. It was raining and our flight got delayed a few times.

So we got on our way to BALI!

We were so excited since almost everyone we knew had already gone to Bali.

The flight was bumpy and scary but Alhamdulillah we reached Bali safely.

We got the Villa transfer. By the time we reached, the driver was waiting for us. Reaching Bali at night was really a magnificent view.

So we stayed at the Putu Bali Villa & Spa.

It was a nice place, but we actually wasted a lot on the Villa itself. Initially, we had planned for a few of us to go to Bali together. But plans changed, but the Villa couldnt so we were charged $624 on a place which was supposed to be for 4 persons. =/

We crashed early since we were so tired from the flight.

The next day while having breakfast, the driver who fetched us from the airport asked whether we wanted a tour. Being wary, we asked how much and he said it was Rp 500,000 for 12 hrs. Not too bad, and the driver was nice anyway. So we said ok. But he let his friend took over instead as he had a prior booking.

So, okay. We went ahead. Bali was so much nicer and friendlier than Bandung. We went to so many places. The driver was really nice as well. Told us many stories, and brought us to many places.

We had a nice dinner at Jimbaran Bay. The atmosphere was really nice, food was okay. We ordered the coconut juice and all. And that ended our night, after touring Kuta area.

That very night, i felt so sick. I kept vomitting and had liquid diarrhoea.

Tried all sorts of things and nothing made it better. I even had to shit and vomit at the same time. It was THAT BAD.

In the end, Hafiz went to the reception to call for a doctor. The doctor came like 2 hours later. -_-" The doctor gave an injection and put me on drip. Felt so weak. Stayed in the whole day. Recently, we realised, it's either I was allergic to coconut juice, or that I had ice in Coconut Juice.

The next day, managed to get up and went for a walk, and we also went to Kuta Beach Walk to shop for a while. Went to Matahari to get some souvenirs and headed back to the Villa.

And so, our last day at Bali, again we headed to the airport early. Waited for flight. The airport was really nice anyway.

It felt really good to be back home after a whirlwind of incidents abroad.

Well, finally finish this very long post. I think it's been more than half a year.

I'll be blogging about that Kedah Bangkok Post soon. I need a break!