A date with Dr Ng

A date?
Several dates, to be exact.
well, those were actually appointment with my surgeon, Dr Ng Char Hong. some said he is among the best in his field. one of the best Breast surgeon? general surgeon? as fas as i am concerned he is my cute surgeon. (lalalalalalalala).

My last chemo was in early June and a week after, it was decided, mastectomy it is.
I kinda just go with the flow. I didn't look further than what alternative treatments i have in hand, but i trust the decision taken was in the best interest of my family especially Oya.

Yes, i kinda feel i don't have much time if i don't act fast.

So on June 25th 2013, i had the operation done.

Oh yes, i was anxious. Who wouldn't. It's kinda a major op for me (apart from c-sect) and also the thought of losing my right breast is...was....surprisingly didn't really bother me at all.

Oh yes, i was more afraid of the pain after the drug was gone than losing my breast.
I was kinda hoping that i'd have similar sensation as my 1st and 2nd c-section. I didn't feel much pain during those 2. Only those "pedih2, perit2" at the end of the stitches.

So, i  was warded for 2 nights at UMSC. ....UMSC you'd say? yes, it's the private wing of UMMC @ PPUM @ UH. Many are not aware but the main building is located between MAHSA College and entrance to UM. But the ward is located at Menara Timur UH, Level 10.

on the 2nd day, my blood pressure dipped till 75/44 from 90ish/50ish. so i guess naturally i do have a low BP but at this reading? hence, the doc ordered 2 bags of blood 0+ for me..yummeh (ewww)..

I was discharged with 2 tubes attached to me for drainage. hence today, i had a follow-up to remove tube for Bottle B and dang it was painful !!!! i know it was only for 10 seconds but it was like having a knife cutting through your finger.

Bottle A is another story. When it was attached to me, the nurse forgot to remove the lock function and there was no fluid in the bottle. so i went to UMSC today with high hopes of getting both removed.
unfortunately, the good doctor unlocked the bottle and a gush of 30ml blood+liquid poured in.
so, in 24hrs, if the level is less than 30ml on top of today's measurement, i could have it removed by monday.

But i guess i won't be able to buy my ticket back to Sabah (for a well-deserved rest) yet since at 6.41pm today, the measurement is already at 100ml (additional 40ml). oh no..:-(

in case you're wondering:-

Frequently, a drainage tube is inserted during surgery in their chest and attached to a small suction device to remove subcutaneous fluid. These are usually removed several days after surgery as drainage decrease to less than 20-30 ml per day

source: http://en.wikipedia.org/wiki/Mastectomy

 sub·cu·ta·ne·ous  (sbky-tn-s)

adj.

Located or placed just beneath the skin: subcutaneous tissue; a subcutaneous implant.

---

subcu·tane·ous·ly adv.

source: http://www.thefreedictionary.com/subcutaneous

but i guess all is just gonna be ok. hopefully the liquid+blood will dry up soon.

WARNING!!!! Kalau cepat rasa geli or gross, sila la tengok ye...hahahah....

Cycle# 5 & 6 - Chemo & Post Chemo

Oh..it's been so long..told ya i'm not a blogger tegar....
well, Alhamdulillah. The last chemo (i'm crossing my finger) is over.
The result from the 5th one..well, was not so encouraging. The tumour size remains unchanged at 5cm.
But hey, it must really love my breast kan...wakakakak...
This last round..i feel the effect for about 1 week. Even as i was typing this, i still feel the heavy-chested feeling and my metal-mouthed has just started to reduce. phewwww.....

but, i've decided to do a right breast mastectomy. say what? yes my dear. I'm gonna remove the whole right breast and the chirpy surgeon announced happily that he ill also remove the lymph nodes. All this while he was looking at my breast wondering what size is my bra,. hahah...ok ok. he just had to do it. maybe he thought i was gonna do recon.

Recon is reconstruction of the breast. It's cosmetic procedure and you need doctor to actually lie for your insurance to pay for it.
so, i guess i'm not gonna do it. I'll just buy the bra that can give the same effect.

The surgery is gonna be on June 27th and reading on post-op care, well, do scare me a little.
Can i move my right hand? yes but not heavy lifting. means no dukung2 Oya for a month or so.
and oh,while the drainage tube is gonna be attached to me, i can't drive for min 2 weeks from what i read.
Thank god a friend has offered chauffeuring me to and fro office when i need to.
Thank god my boss has also offfered work-from-home thingy,.

Let's just see what happen then. Insyaallah, everything is gonna be just fine. Allah kan ada :-)

For those who wonder how much chemotheraphy costs, well here it is.
Hospital: PPUM/UMMC
Non-gov staff so has to pay on my own.

Pre-chemo (a day before chemo) - 3 weeks from the last chemo:
Take blood for test (immunity). Chemo will need to be postponed if my Blood count was not sufficient. (Luckily, mine was ok. all 6)
Review appointment with Oncologists to check on my condition.
Measure the tumour.
Get MC and prescription.
Go get anti-vomitting medicine.
Cost:
Oncologist & Blood test: RM67.00
Medicine: RM5 (From kaunter ubat biasa) and RM27 for 1pc of Kytril (from PharmUMMC-Farmasi).
Total: RM99.

Chemo day (if blood test ok. No news means good news):
Chemo which lasted about 2 hours.
Cost: about RM30

Total per chemo: RM129.00 excluding other expenses and extra medicine from pharmacy (if any).

But company got insurance kan? so claim la.
It's covered under Daycare and fee deducted from Hospitalisation fund (not the Clinic care fund).

haaaaa.....costly kan. betul la. preventive is better than cure.

My OP pun kalau buat kat PPUM is gonna cost around RM3000.00.
But i have decided to do it in UMSC(Private wing of PPUM). It gonna cost around RM12000.00.

kalau bayar sendiri...pergh....meroyan.

tapi takpela. betulkan nawaitu.
Kerana Allah SWT. Insyaallah, everything is gonna be just fine :-).

Cycle# 3 & 4 - Chemo & Post Chemo

Chemo is a terrible experience one can go through.

No matter how positive you are, there's the undesirable effects that can bring us to the lowest point of our life.

Nope. I have no problem with being bald or having darkened nails.

It's the not-feeling-so-good feeling, bodyache, metal-mouthed, angin dalam perut, morning-sickness that had me complaining.

This time around i had less metal-mouthed feeling but morning-sickness feeling was seriously terrible.
Now i know why people escapes from chemo treatment. I constantly have angin in my tummy and i need to snack very2 frequently to combat the nausea thingy as well as the angin.

My left arm is also achy since the drug went in thru this arm. so, it's completely normal for the said arm to ache even to the point that the veins actually gets darkened and surfaces. What i do? i just tuam tuala panas to reduce the pain looooo....

Tapi hidup kena teruskan. after a week usually i'll feel better and pening2 pun dah kurang.

Again, thanks for all the support dearies. I have two more to go.

and oh yes, initially the size of the tumour was 12x12cm. after the 3rd chemo, it has reduced to 7x6cm. alhamdulillah. what more can i ask for?

Cycle# 2 - Chemo & Post Chemo

I had my 2nd chemo on March 7th.
It was a lil bit unpleasant compared to the first one but i managed. how? i slept almost during the whole process.

This time, my metal-mouthed feeling got worst and it lasted for a week. But i had this craving for sandwiches, cabonara-alike pasta (which i still haven't satisfy yet) and sambal ikan bilis.

Missing hometown

January - went back to Sabah for almost 2 weeks.

Yeah sure. I wanted to try local traditional healer back in kampung.

But ultimately, i got the peacefulness i craved for so long.

Rindu kot. tempat jatuh lagi dikenang kan..

so, benda2 yang biasa kita tengok kat Sabah termasuk lah: 

banyaknya kenderaan 4x4. model: abangku.

Dinner & Such

The theme for year 2013 was Black & Purple.

Hence, everyone was purplish on 1st February 2013.

It was held in hmmmm..apa nama restaurant itu..lupa daaaa

Italian resto la..sebelah je dengan arabic resto yg agak glamer kat situ and tak jauh dari Baitulmal Kg Pandan.

our disabled child not worth it?

On 23rd february 2013, the annual Children's Party is being held again at Thean Hau temple, robinson height at Seputeh area. This year, the main sponsors are Persatuan Hainan WP & Selangor and China Press.

What usually happen is those associations which takes care of orphans or from children's home or diabled children will be celebrated. There are food, entertainment like clowns, singing, magic show and donation giving ceremony. Yang best, ang pow giving time. a lot leyyy...this year, Oya got RM207. thanks u uncles and aunties.:-)

Oya and Nabil. Besties

Seronok naik bas

Nyanyi karaoke..

ang pow siap ada nombor leyyy

the food and etc etc

Siap jalan2 kat Bukit Gasing lagi kejap...sebab balik tuh jam amat...adeh..

tapi disebalik kegembiraan, surat hari neh membuat aku hanya tersenyum tawar.
Kami masih bersyukur. cuma kadang2 bila terasa hak kita dipermainkan, rasa macam nak jadik srikandi la plak. haiyaaaaaaarkkk.

This letter is from SCASFT (Oya's school) to JKM. One of the agendas is to state that the welfare grant is taken out from the maintenance grant. Mind you, SCASFT is NGO. We only pay RM50 per annum and the rest depends on the donations drive.

Transport subsidy.
If if i send Oya to school EVERYDAY, i will only get RM120.00. Our own insurance some more whereas normal school children on school bus are covered by insurance automatically.
Don;t get me wrong. I am happy for the insurance-bus thingy but is our disabled child not worth it?
Special schools are not available everywhere like the national schools. Even if they have special education classes, they are limited and with conditions like must be able to walk or operate their own wheelchair.


and 19 years old tak dapat allowance? we are talking about OKU okay...kalau yang bo;leh bekerja they will tapi yang tak boleh?

What happens to Children like Oya? Don't she and her friends whom are not able to walk (yet) and needs assistance deserve education? so sampai bila2 dorang mcm tuh la? tak layak masuk main stream?

In centres like SCASFT, i do not need to be there (i can;t afford to quit work also). They have class assistants who will take care of the children (tukar pampers, bagi makan, etc). That's why yang lebih 18 tahun pun masih bersekolah kat sini sebab ada latihan vokasional dsb.

But these centres need fund to operate.


So, without the government grant, how?
Belum lagi aku cakap pasal monthly allowance. Belanja for OKU kid is double from normal kid.
So imagine what you are earning now and the spending on your child. Now, at least kali dua lorrr..



boleh kau tanggung?
alhamdulillah. so far rezeki Oya dan Adam mencukupi. aku amat bersyukur.
Cuma aku kesian kat kawan2 yang mana rezeki belum mencukupi.

Tapi kami bukan peminta sedekah. Kami akan cuba memenuhi keperluan anak syurga kami walau kadang2 berkorban.

Anyway, selamat berbelanja dengan duit BRIM anda.

Story of Dalili Sofiya

It's been ....6 years.

She is now 6 years old. Time flies so fast.

I am happy, blessed and having wonderful times having her in our life.

But i can't deny the fact the yes, i am worried for her.

What happened, really? we had to answer similar questions everytime new people see her and know that she still cannot talk and walk like a 6-years-old.

Here it is:

My pregnancy went smoothly until the birthing process. Adam, the elder brother, was born healthy via c-sect after nearly 24 hours of labour pain. 

Sofiya, on the other hand, had me in intense labour pain for 4 hours after my water was broken by the nurse at 12midnight. The pain before the breaking thing was bearable.at 3am we tried for normal delivery and after few tries i asked for C-Sect. I felt out of energy.

My request was denied with "sabar, beranak memang sakit". 

Vacuum was introduced and failed. at 6am, i was on the on the way to surgery room and i could hear the surgeon said "it's too late".

Hence, on Feb 25th 2007, Sofiya was born via c-sect and was in NICU 2 weeks after that.

I was told that her chance was only 50/50 and if the 3rd drug didn't work on her, nothing will.

Alhamdulillah. It worked and her epilepsy or sawan ceased until today.

Except, she was out of oxygen during birthing process and 2 years later, she was pronounced as Cerebral Palsy. She had Global Developmental Delay where even at 1 year old, she couldn't even sit on her own yet.

There you go. I think i got it all covered. 

Sample Itinerary: Bandung-Jakarta & Conversion table

Based on my last trip on Dec 6th~12th 2012, this was our itinerary.
To have this kind of itinerary, either you should know how-to-get-around or just hire a supir.
habis cerita.

This was the conversion table i used and distribute to trip members to facilitate with shopping.
Of course, this was based on general exchange rate. kalau nak accurate payah la.

Cycle#1 - Post Chemo

Post chemo Day#1 - Feb 16th. Saturday
Alhamdulillah. I felt just fine. It maybe because i kept hitting the pills as prescribed.
But i do notice that the red colour in my urine has reduced tremendously since Day 0. Water my friend..water intake...
I also notice that my appetite is ..normal? i do eat a lot even i have some minor tasteless feel on my tonque.


Post chemo Day#2 - Feb 17th. Sunday
Alhamdulillah. I felt just fine. But i started feeling nauseating a bit. Much more similar to ..morning sickness for during pregnancies. But i do munch on snacks and limau kasturi to keep it at bay.
But my appetite is still huge. I hit the mee goreng mamak while savouring for nasi and kari.
Nope. i dont feel guilty. I will take care of my future menu but indulging once in a while won't hurt  right?
This i get from cancer patients. If we are already losing thr appetite, why should we limit our choices?
But with moderation, of course.

So, after sending my mom to LCCT, we went to Bagan Lalang and hit the seafood resto. ahaks.


Post chemo Day#3 - Feb 18th. Monday
Alhamdulillah. I felt just fine. I'm still on MC and planning for my next rafting on March 2nd.
Still having the "morning sickness" and i am watching out for the steady decreasing of my white blood count starting from today. It should pick up again on the day 10th.
I can imagine having going to work tomorrow with masks.

Hopefully all is getting better. If this is what i am going to go through for the next 6 months, then Redhalahkanlah Hati ku Ya Allah, tinggikanlah keikhlasanku Ya Allah.
Hanya padaMu aku berserah.