Wednesday, December 31, 2014

Mengisi Waktu Dengan Kegiatan Yang Bermanfaat

Di NUH hospital di mana istri saya dirawat punya banyak program untuk para penderita cancer atau para care giver. Semua nya diberikan secara gratis.

1. Master cooking class 
2. Beauty Class
3. Yoga Class
4. Counselling untuk penderita dan caregiver.
5. Seminar tentang cancer

Istri saya pernah ikut master cooking class dan beauty class.

Saya ikut survey caregiver. Untuk setiap sesi yang saya ikuti saya mendapat SGD 15. Hahaha sekali-kali dibayar oleh hospital asyik juga. Walau berupa voucher supermarket. 

Waktu menjelang Natal ada nurse yang membagikan buah-buahan. Mereka menyanyi lagu Natal. Terus mereka memberikan topi rajut yang di dalam nya ada surat dari pembuat topi. So sweet.



Saya sering mengikuti seminar tentang cancer yang diadakan oleh NPC support group baik yang di NUH hospital maupun SGH hospital. Bertemu para NPC survivor sangat membangkitkan semangat untuk berjuang.

Salah satu seminar yang saya ikuti menjelaskan tentang penyakit NPC dan apa saja yang harus dilakukan setelah selesai radiasi. Sudah tentu saya rekam.

Jika ada pembaca yang mau melihat rekaman saya bisa email ke npcsurvivor@gmail.com

Wednesday, December 17, 2014

Perpanjangan Visa di Singapore

Karena proses pengobatan bakal lewat 1 bulan maka kami harus perpanjang visa .

Di NUH terdapat divisi IPLC (International Patient Liaison Centre) yang dapat membantu proses perpanjang visa. Setelah dapat surat rekomendasi dari dokter untuk perpanjang visa. Saya coba minta IPLC utk membantu kami. Saya serahkan semua dokumen ke IPLC. Mereka membantu input data kami secara online.

Perpanjangan visa punya istri saya berhasil, sedangkan yang punya saya ditolak. Wah kenapa punya saya ditolak? IPLC menginstruksikan supaya saya urus perpanjangan visa ke ICA building dekat Lavender MRT.
Yang sudah saya coba urus perpanjangan visa ke ICA Building. Saya mencari informasi mengenai cara mengurus perpanjangan visa di ICA  ke kenalan yang di Singapore. Tips nya :
1. Harus ada rekomendasi dari hospital.
2. Datang sepagi mungkin. Kalau antri nya sudah panjang tenang aja belum tentu yang antri tujuannya sama dengan kita.
3. Sesudah pintu dibuka jangan naik pakai elevator tapi naik nya escalator saja. Karena kebanyakan orang ingin naik elevator. Hahaha make sense.

Pagi-pagi saya sudah sampai ke ICA building. Wah betul jam 7:20 pagi sudah antri panjang. Semoga perpanjangan visa saya berhasil dengan lancar. Antri dengan tertib.

Tepat pukul 8 pintu dibuka. Semua pada lari. Saya langsung naik escalator ke lantai 4. Puji Tuhan dapat nomor satu hahaha.

Setelah tanya jawab sedikit dengan petugas counter ICA, ternyata petugas IPLC salah input nama saya waktu daftar online. Langsung disetujui perpanjangan visa saya :)
Puji Tuhan proses perpanjangan visa  lancar.

Saturday, November 15, 2014

Tuhan Kirim Orang-orang Baik Kepada Kami

Puji Tuhan selama tinggal di Singapore kami ditemani oleh pendeta dan istri, dan seorang penginjil. Mereka sangat membantu kami dan menguatkan kami. Tuhan tolong kami dengan mengirimkan orang-orang yang baik kepada kami.
 
Mendekati waktu radiasi saya makin cemas.

Salah satu pendeta di gereja kami didiagnosa NPC sama seperti istri saya. Beliau memberikan kesaksian waktu diradiasi beliau sangat menderita. Mulut dan kerongkongan nya sakit sekali. Sebelum makan dia harus pakai morfin dulu. Tidak bisa tidur karena sakit itu.

Saya merasa takut kalau istri saya mengalaminya juga. Saya cari informasi di internet dan di tempat lain, bagaimana cara mengatasi efek radiasi ini.

Puji Tuhan akhirnya ditunjukkan jalan. Saya melihat ada brosur NPC support group. Nama nya NPC One Heart. Saya coba whatsapp. Kemudian saya bertemu dan berkenalan dengan Mr Dave. Dia pimpinan NPC One Heart. Mr Dave adalah NPC survivor. Saat pertama bertemu saya lihat Mr Dave sangat sehat dan badan nya mirip atlet.

Dia sangat baik. Dia menjelaskan kepada kami bahwa sekarang NPC sangat bisa disembuhkan. Dia cerita kepada kami bagaimana dulu dia berobat. Cara mencegah efek radiasi. Kemudian dia mengajak kami untuk datang ke NPC seminar. Seminar mengenai efek kesulitan mendengar dan menelan karena efek radiasi.

Kemudian saya datang ke seminar itu. Saya ketemu para NPC survivor. Mereka sangat baik dan welcome. Yang paling berkesan saya bertemu dengan Mrs Sylvia. Dia seorang penyanyi opera dan terkena NPC. Mrs Sylvia sekarang sangat sehat. Saya terkesan dan saya ingin istri saya ketemu dia.

Saat saya utarakan keinginan saya. Mrs Sylvia setuju dan besok pagi dia mau datang ke apartemen tempat saya menginap. Wow saya tidak menyangka dia menyempatkan diri sengaja datang.

Kemudian saya mendapat info dari salah satu peserta seminar bahwa ada NPC support group yang berbeda dan berada di bawah naungan rumah sakit SGH.

Saya coba menghubungi support group di SGH itu. Kemudian saya kenalan dengan TC. Dia juga orang yang sangat baik. Dia bersedia datang ke apartemen kami untuk bertemu dengan istri saya. Jadi besok pagi  saya punya 2 orang tamu hahaha. 

Yang pertama datang adalah TC. 14 tahun yang lalu dia didiagnosa NPC. Dia sekarang melakukan pelayanan dengan  membantu penderita NPC baru. Dia sudah membantu sekitar 300 orang. 

Dia minta semua data klinik istri saya. Dia jelaskan semua cara untuk mengurangi efek radiasi.

1. Minum cooling liquid seperti chrysantemum, juice pear korea, atau barley sebanyak mungkin.
2. Minum manuka honey 10+
3. Pakai getah lidah buaya di leher supaya kulit tidak rusak.
4. Sering kumur dengan air garam.

Kemudian TC menginstruksikan supaya istri saya latihan mulut dan leher setiap hari. Karena efek radiasi urat mulut bisa kaku jika tidak dilatih. Mulut tidak bisa dibuka sama sekali. Leher juga sama bisa kaku sehingga tidak bisa menengok ke kiri atau ke kanan.

1. Latihan mulut. Buka tutup mulut lebar-lebar, sehingga kira-kira 4 jari masuk. Lakukan minimal 10x sehari.
2. Senam leher. Tengok kiri dan kanan  dan atas bawah beberapa kali.


Contoh latihan mulut dan leher :

https://www.youtube.com/watch?v=Gx8lmTiov3A

Kemudian sore datang mrs Sylvia. Dia membawa minuman cooling liquid. Resep nya : buah pear, jamur putih, kacang almond direbus. Kemudian rebusan itu diminum. Dia juga menyuruh istri saya supaya latihan mulut dan leher. Saya harap semangat istri saya bertambah kuat, karena melihat Mrs Sylvia yang begitu sehat dan mempunyai semangat hidup yang tinggi.

Mereka semua orang-orang yang baik. Setelah menderita kanker mereka kemudian membantu orang lain yang senasib dengan mereka. Salut!

Setelah bertemu mereka hati saya menjadi mantap untuk istri saya menjalani radiasi.

Saya yakin ini pertolongan Tuhan juga. Bisa bertemu dengan mereka.

Saya cari manuka honey. Ternyata banyak sekali merk dan level nya dengan penanda yg berbeda-beda.

Saya googling ternyata manuka honey ini ada sertifikasi nya. Yang baik ini penanda nya adalah UMF dan perusahaan harus terdaftar di website sertifikasi tersebut.


Ini buku dari website SGH hospital tentang manuka honey dan aloe vera:

https://www.healthxchange.sg/cancer/nose-cancer/aloe-vera-manuka-honey-radiotherapy

Nose Cancer : Managing the 4 Major Side Effects of Radiotheraphy :

https://www.healthxchange.sg/cancer/nose-cancer/nose-cancer-managing-four-major-side-effects-radiotherapy

Managing the common side effects of radiotheraphy :

https://www.healthxchange.sg/cancer/nose-cancer/managing-common-side-effects-radiotherapy

Penulis nya adalah TC. Dia orang yang baik dan banyak menolong patient NPC. Forum ini adalah NPC support group dari SGH hospital.
NPC group dari NUH hospital :


Saya bergabung dengan banyak support group. Masing-masing support group mempunyai kelebihan tersendiri. Dari mereka kita bisa belajar banyak hal yang sangat berguna.

Blog yang banyak informasi penting :


Buku yang bagus membahas head & neck cancer :

NPC support group di FB (Nasopharyngeal Carcinoma Awareness) :



God Send Good People To Us



God Send Good People To Us

Praise The Lord. When we stay in Singapore we were accompanied by a pastor and his wife, and an evangelist. They really helped us and strengthened us. God help us by sending people who are nice to us.
 
Approaching radiotherapy time I was more worried.

One pastor in our church diagnosed with NPC just like my wife. He testified he was miserable when got radiotherapy. His mouth and throat was very pain. Before the meal he had to take morphine first. He could not sleep because of the pain.

I was afraid that my wife will experience it too. I was looking for radiotherapy information on the Internet and elsewhere, seeking how to overcome the effects of radiotherapy.

Thanks God finally shown the way. I saw a brochure NPC support group. It calls NPC OneHeart. I tried to text to them via whatsapp. Then I met with Dave. He led NPC One Heart. Dave is NPC survivor. I saw Dave is very healthy and his body like an athlete.

He is very kind. He explained to us that nowadays NPC is curable. He told us how he was treated first. He told us how to prevent the effects of radiotherapy too. Then he invited us to come to the NPC seminar. This Seminar was about the effects of hearing and swallowing difficulties due to the effects of radiotherapy.

Then I came to the seminar. I met the NPC survivors. They are very good and welcome. The most memorable when I met with Sylvia. She is an opera singer and got NPC. Sylvia is very healthy now. I was impressed and I wanted my wife to see her.

When I mentioned to her. Sylvia agreed and tomorrow morning she would come to the apartment where I was staying. Wow I can not believe she was willing to come.

Then I got information from one of the participants of the seminar that there is another NPC support group and it under SGH hospital.

I tried to contact the SGH support group. The leader is TC. He also a very good person. He was willing to come to our apartment to meet my wife. So tomorrow morning   I have two guests. 

The first to come was TC. 14 years ago he was diagnosed with NPC. Now he is doing service to help new people with NPC. He has already helped about 300 people. 

He asked about my wife’s clinical data. He explained how to minimize the effects of radiotherapy. His tips:

1. Drink cooling liquid such as Chrysanthemum, Korean pear juice, or barley as much as possible.
2. Take manuka honey 10+ 3 times a day
3. Rub aloe vera gel on the neck area so that the skin won’t get burn and tear.
4. Often gargle with salt water.

TC said my wife must do mouth and neck exercises every day. Due to the effects of radiation can cause trismus if not trained. Mouth can not be opened at all. Neck also can be stiff; it can not look left or right. So must do mouth and neck exercise every day!

1. Mouth Exercise: Open mouth as wide as you can. Do at least 10 times a day.
2. Neck Exercise: Look left and right and up and down several times.

Examples of exercises mouth and neck:

Then Sylvia came at the afternoon. She brought a cooling liquid in a jar. Her recipe: pear, white mushrooms, almonds boiled. This recipe is very good to avoid mouth and throat pain. She also told my wife to do mouth and neck exercises. I hope my wife's spirit grow strong after seeing Sylvia is so healthy and living with fullness.

They are all nice people. After suffering from cancer they help others in the same boat with them. Salute!

After meeting them we feel ready for my wife to get radiotherapy.

I believe it's God's help as well. We are able to meet them.

I tried to find manuka honey. Apparently a lot of brands.

I was googling then find manuka honey have its own certification. It called UMF certification and the company must be registered with the certification website.


This website about manuka honey and aloe vera:

TC wrote it. He is a good guy and a lot of help patient NPC. This is the forum belong to NPC support group from SGH hospital.


NPC support group website from NUH hospital:


I joined a lot of support group. Each support group has its own advantages. From them we can learn many things that are very useful.

Blog with a lot of important information about NPC:

A good book addresses head & neck cancer:

NPC support group in FB (Nasopharyngeal Carcinoma Awareness):


Saturday, November 1, 2014

Chemotheraphy

Setelah menunggu 1 minggu akhirnya istri saya menjalani hari pertama chemo.

Untuk tahap pertama yaitu 3x chemo tiap 3 minggu, onkologi doctor mengatur supaya chemo dilaksanakan hari Jumat. Jadi Sabtu pagi kami dapat langsung terbang ke Bandung. 

Kami diminta datang pagi-pagi untuk periksa darah dulu. Kemudian masuk ke ruangan chemo.

Ruangan chemo terdiri dari ruangan terpisah. Tiap ruangan ada LCD TV. Istri saya duduk di kursi kemudian mulai diberikan infus.

Obat chemo yang diberikan adalah Cisplatin. Karena efek cisplatin dapat merusak ginjal maka ginjal harus dikuras untuk dibersihkan dulu. Awal diberi cairan infus 2 botol kemudian diberi obat supaya istri saya terus kencing. Setelah itu diberi obat chemo. Kira-kira proses nya antara 6 sampai 7 jam.

Yang bagus di sini adalah para perawat nya teliti. Setiap mereka akan memberikan obat, mereka menanyakan nama, tanggal lahir istri saya. Proses pengecekan obat dilakukan oleh dua orang perawat. Mereka berdua cek obat yang akan diberikan apakah sesuai dengan kertas panduannya.

Kemudian datang bagian farmasi. Dia menayangkan video yang menjelaskan efek-efek yang mungkin dialami istri saya karena chemo. Kadang orang bisa mengalami diare atau sebalik nya jadi konstipasi. Mual-mual dan pusing. Jika panas di atas 38c harus segera ke UGD karena dikhawatirkan kena virus yg berbahaya. Untuk istri saya ada obat chemo juga yang dibawa pulang. Namanya TS-One.

Persiapan menjalani chemo :
1. Bawa makan siang.
2. Bawa mantel dan kaos kaki.
3. Bawa film  yang banyak hahaha.

Puji Tuhan istri saya kuat menjalani chemo. Kadang dia kena batuk atau pilek ketika kami berada di  Bandung. Rambut tidak terlalu rontok. Saya sering sekali email ke dokter Singapore. Saya tanya harus diberikan obat apa kalau dia sakit batuk atau pilek. Tapi dokter jarang balas email saya.

Pernah sekali istri saya panas tinggi badannya sore-sore. Wah saya panik. Saya coba cari dokter spesialis kanker di Bandung. Dokter-dokter spesialis sedang cuti semua. Saya coba bawa ke dokter umum. Dokter menyarankan istri saya dibawa ke rumah sakit. Saya takut membawa istri saya ke UGD di Bandung. Katanya dokter-dokter yang jaga di UGD Indonesia itu dokter-dokter baru lulus. Kami baru bisa konsultasi dengan dokter spesialis besok pagi. 

Malam itu kami sekeluarga berdoa bersama-sama. Puji Tuhan jawab doa kami. Tengah malam panas badan nya menurun. Semalaman istri saya mengigau. Menjelang pagi panas badan nya sudah normal.

Dokter di Singapore memberikan anti mual yang banyak dan mahal-mahal. Ada satu macam obat anti mual yang membuat gula darah istri saya jadi tinggi sekali. Tapi kalau tidak minum obat itu istri saya merasa sangat mual.

Untuk menjaga kondisi badan istri saya minum air kelapa muda dan alpokat hampir tiap hari. Makan sayur  organik dan buah-buahan. Daging merah dan sea food tidak makan. Selama chemo istri saya tetap minum kunyit putih (curcumin). Prof Goh mengijinkan istri saya minum curcumin selama chemo. Dan ternyata curcumin membantu obat chemo menjadi lebih efektif membunuh sel kanker.

Saya takut istri saya harus menjalani pengobatan radiasi. Saya baca efek radiasi di bagian kepala sangat banyak. Misal :
1. Kehilangan indera perasa.
2. Air ludah jadi sedikit.
3. Radiasi bisa menyebabkan sel kanker bermutasi.

Dan banyak lagi yang lain. Kami terus berdoa semoga ada mujizat kesembuhan sehingga istri saya tidak perlu menjalani pengobatan radiasi. 

Hari terus berjalan. Setelah chemo ketiga mendekati saat radiasi saya minta supaya istri saya mendapat MRI ulang. 
Hasil nya bagus. Sel kanker nya berkurang sangat banyak. Tetapi semua dokter tetap menyarankan untuk radiasi. Ternyata Tuhan menghendaki lain. Jalan yang harus kami tempuh masih panjang. Tapi kami bersyukur chemo nya sejauh ini telah berjalan dengan baik.


Chemotherapy



Chemotherapy

My wife finally took 1st chemotherapy after waiting 1 week for preparation.

For the first phase, my wife got 3x chemotherapy every three weeks, oncologist doctor arranged for chemotherapy held on Friday. So on Saturday morning we were able to fly to Bandung. 

My wife was asked to come early to got blood test first. Then go to the chemotherapy room.

Chemotherapy room consists of separate rooms. Each room has a LCD TV. My wife sat in a chair and then starts infusion.

The chemo drug is cisplatin. Due to the effects of cisplatin can damage the kidney, the kidney must be drained to be cleaned first. Early intravenous fluids were given two bottles then were given a drug that so my wife continue peeing. After it was given chemo drugs. Approximately the process between 6 to 7 hours.

Nurses were very careful here. When they gave you medication, they will ask for your name and birth date. The process of drug checks carried out by two nurses. They both check whether the medication to be given according to the paper guide.

Then came the pharmacy. He showed a video which explains the effects that may be experienced by my wife because chemo. Some people may experience diarrhea or constipation. Also can cause nausea and dizziness. If body heat above 38C then should immediately go to the ER because of fears of contact with a dangerous virus. My wife also got another chemo drugs to take to home, it calls TS-One. It an oral medicine must take everyday for 2 weeks every cycle.

Preparation undergoing chemo:
1. Bring a lunch.
2. Bring a coat and socks.
3. Bring a lot of movies hahaha.

Thank God my wife was undergoing chemo strongly. Sometimes she got cough or cold when we were in Bandung. Her hair not falls out to much. I often email to the doctor in Singapore. I asked what drugs should be given if she is get coughs or colds. But doctors rarely reply to my email.

My wife got fever once. Wow, I panicked. I was trying to find an oncologist specialist in Bandung. All of them on leave. I tried to take my wife to the GP. The doctor advised my wife taken to a hospital. I was afraid to bring my wife to the ER in Bandung. Many say doctors who take care in the ER in Indonesia was newly graduated doctors. We can only consultation with a specialist tomorrow morning. 

That evening we prayed together. Thanks God, he answered our prayers. At Midnight my wife body temperature was lowered. All night my wife was delirious. Towards morning her body heat was normal.

Doctors in Singapore provide numerous and costly anti-nausea. There is one kind of anti-nausea drug that makes my wife's blood sugar level so high. But if she did not take the medicine then my wife felt very nauseous.

To maintain body condition my wife drank coconut water and avocados almost every day. She ate organic vegetables and fruits. Red meat and sea food do not eat. During chemo my wife was still drinking white turmeric (curcumin). Prof Goh allows my wife to drink curcumin during chemo. And it turns out curcumin helps chemo drugs become more effective at killing cancer cells.

I'm afraid my wife had to get radiotherapy. I read the effects of radiotherapy on the head area cause many bad side effects. For example:

1. Loss of sense of taste.
2. Dry mouth, saliva so little.
3. Radiotherapy can cause cancer cells to mutate.

And many more.

We continue to pray for a miracle so that my wife did not have to get radiotherapy. 

Days continue to run. After the third chemotherapy, radiotherapy time approaching.  After my wife took last chemotherapy on first phase then I asked my wife got another MRI. 
The result is good. Cancer cells shrunk very much. But all the doctors still recommend continuing with radiotherapy. God wills us to travel a long journey to heal. But we are grateful for her chemotherapy so far gave a good result.

Tuesday, September 23, 2014

Persiapan Pengobatan Chemo dan Radiasi

Saat bertemu dokter radiasi dijelaskan kira-kira semua proses dan efek samping akibat radiasi. Ketika saya tanya masalah gigi harus bagus sebelum radiasi, dokter radiasi merujuk istri saya ke dental center di NUH.

Istri saya diperiksa oleh dokter gigi di sana. Gigi nya harus di-rontgen ,dan setelah dilihat dokter gigi, dokter bilang banyak gigi yang harus dicabut. Istri saya saat itu menangis. Shock!

Gigi yang berlubang kata dokter tersebut harus dicabut. Karena setelah diradiasi gigi tidak boleh dicabut. Sehingga gigi yang sudah ditambal harus dicabut.

Rencana besok pagi gigi istri saya mau dicabut. Istri saya stres. Malam itu saya tidak bisa tidur. Saya berdoa dan malam itu saya coba email 3 dokter (THT, chemo, dan radiasi). Dr Ivan Tham (dokter spesialis radiasi) usul supaya minta 2nd opinion ke dokter gigi lain.

Keesokan harinya saya coba daftarkan istri saya untuk ketemu dokter yang lebih senior. Ternyata tidak bisa langsung. Harus daftar dulu. Wah bagaimana ini. Ternyata di NUH sistem di dental center belum terintegrasi dengan divisi lain. Sedangkan Jadwal chemo untuk istri saya sudah mulai minggu depan. Akhir nya ditawari ke dokter kunjungan. Jadi kami coba konsultasi ke dokter tersebut.

Kami tunggu di ruang tunggu dental center. Setelah lebih 2 jam tunggu dokter tidak kunjung datang. Padahal tadi diinformasikan kami tidak akan menunggu lama. Karena istri saya sudah lemas saya coba komplain ke perawat di counter.

Perawat coba telepon dokter. Tapi dokter susah dihubungi. Akhir nya kami dirujuk ke Prof Asher Lim, Prof Asher Lim adalah dokter kepala di sana. Wah puji Tuhan. Kemarin diinformasikan tidak bisa konsultasi ke Prof Asher Lim. Karena harus daftar dari jauh-jauh hari.

Saya ceritakan kondisi istri saya ke Prof Asher. Saya informasikan mengenai gigi istri saya yang harus dicabut sangat banyak jumlahnya. Prof kemudian panggil dokter yang kemarin ketemu. Setelah diskusi lama akhirnya Prof Asher putuskan hanya 4 gigi saja yang dicabut. Gigi yang ada tambalan cukup diperbaiki saja. Puji Tuhan. Saya yakin ini pertolongan Tuhan. Doa saya dijawab.

Akhirnya gigi istri saya langsung dicabut 4. Ketika istri saya keluar dari ruang operasi, saya lihat mulut istri saya banyak darah. Saya sudah miris. Tidak dapat dibayangkan kalau gigi yang harus dicabut lebih banyak lagi.



Chemotherapy and Radiotherapy Preparations



Chemotherapy and Radiotherapy Preparations

When we saw radiotherapy doctor, he described every process of radiotherapy and side effects from radiation. I asked about good teeth before radiation, the radiotherapy doctor referred my wife to a dental center at NUH.

My wife checked by a dentist there. Her teeth should be X-rays, and after the dentist seen the result, the dentist said many teeth should be removed. My wife was crying. Shock!

The dentist said every tooth cavities must be extracted. Because tooth can not be extracted after radiotherapy.

The dentist planning tomorrow morning my wife's teeth would be extracted. My wife stressed. That night I could not sleep. I prayed and I tried to email our doctors (ENT, chemo, and radiation). Dr Ivan Tham (radiotherapy specialist) proposed to get for 2nd opinion to other dentist.

The next day I was trying to register my wife to see a more senior dentist. But dental center said registration can not do in short time to see a senior dentist. Wow how to get 2nd opinion? Then we found out that the dental center’s system has not been integrated with other divisions in NUH. My wife's dental care schedule was messed with chemo’s schedule. Then dental center suggested seeing visiting dentist. So we tried to consult the visiting dentist.

We waited in the waiting room at dental center. After over two hours waiting the visiting dentist did not come. Whereas earlier informed we will not wait long. Since my wife was already weak I tried to complain to the nurse at the counter.

Nurse was trying to call the density. But the dentist can not be called. Its end we were referred to Prof Lim Asher, Prof Asher Lim was the head dentist there. Gee, thanks God. Yesterday we informed can not consult Prof. Asher Lim. He had a long list.

I told my wife's condition to Prof. Asher. I informed him about my wife's teeth were to be extracted very numerous. Then Prof Asher called the dentist whom we met yesterday. After a long discussion, Prof. Asher finally decided just four teeth need to be extracted. Thanks God. I believe it's God's help. My prayer was answered.

Finally four of my wife’s teeth were extracted. When my wife came out from the operating room, I saw my wife's mouth full with a lot of blood. I've been sad. I can not imagine if more teeth should be extracted too.

Website about the condition of the teeth prior to radiotherapy:

Sunday, September 21, 2014

Treatment In Singapore



Treatment In Singapore

We got a lot of help from the company where I work, friends, family, and church. Thank God its end we were ready to leave for Singapore. All our needs have been provided by God. Thanks to all who have helped us.

We went to Singapore on 15 September 2014. Consultation with ENT surgeon (Prof Thomas Loh). All the results of the biopsy and CT scan from Indonesia can not be used. Exactly what the doctor had said from Singapore during the seminar. My wife got biopsy, MRI and Pet-scan. All examinations were expensive.

The results have to wait a few days. My wife's condition was weak. Sometimes she wants to have a walk to the shopping mall. But after just a short walk, my wife felt weak and ask to go home. We prayed God give miracles. It turns out there was a process that we must fighting for my wife recovered. We can only pray and surrender. God will open the way.

After the results came out, doctor told her the cancer cells were suppressing some regions of the brain so that my wife's cheek feels sick. And the size of her cancer cells was large. Must do chemotherapy and radiotherapy

My wife then referred to an oncologist doctor (Prof Goh Boon Cher) and radiotherapy doctor (Dr. Ivan Tham). The treatment was chemotherapy every 3 weeks. After that radiotherapy 33 times combine with chemotherapy every week for 6 weeks. So roughly treatment and estimated takes 5 months. Feels heavy and long journey. Our youngest child was 2 year old. But what can we do, just follow the treatment, fighting and pray. 

It turned out that at NUH no radiotherapy machine that called TomoTherapy but they have Electra Infinity engine. Ouch confused again should I had to move to SGH? But the cost incurred in NUH has been so much anyway. 

Pengobatan Di Singapore

Kami mendapat banyak bantuan dari perusahaan tempat saya bekerja, teman-teman, family, dan gereja. Puji Tuhan akhir nya kami siap berangkat ke Singapore. Semua kebutuhan kami telah diatur oleh Tuhan. Terima kasih kepada semua yang telah membantu kami.

Kami berangkat ke Singapore tanggal 15 September 2014. Konsultasi dengan dokter spesialis bedah THT (Prof Thomas Loh), yang direkomendasikan agen dari Bandung. Semua hasil biopsi dan CT-Scan dari Indonesia tidak bisa dipakai. Betul apa yang dikatakan dokter dari Singapore pada saat seminar. Istri saya kembali dibiopsi dan dilakukan pemeriksaan MRI dan Pet-scan. Semua pemeriksaan itu mahal sekali.

Hasil nya harus menunggu beberapa hari. Kondisi istri saya saat itu agak lemas. Kadang ingin jalan-jalan ke mall. Tapi baru jalan-jalan sebentar, istri saya merasa lemas terus minta pulang. Kami berdoa terus supaya Tuhan memberikan mujizat. Tuhan ternyata menghendaki ada proses yang harus dilewati untuk istri saya sembuh. Kami hanya bisa berdoa, berdoa dan berserah. Tuhan pasti buka jalan.

Setelah hasil nya keluar Dokter bilang  sel kanker nya ada yg menekan ke daerah otak sehingga pipi istri saya berasa sakit. Dan ukurannya sel kanker nya lumayan besar. Harus dilakukan chemo dan radiasi.

Kemudian istri saya dirujuk ke dokter chemo (Prof Goh Boon Cher) dan dokter radiasi (Dr Ivan Tham). Pertama harus chemo 3x tiap 3 minggu sekali. Setelah itu diradiasi 33x dan chemo 6x tiap minggu. Jadi kira-kira pengobatan perlu waktu 5 bulan. Terasa berat dan lama. Anak kami yang paling kecil baru berusia 2 tahun. Tapi mau bagaimana lagi, dijalani saja semua proses ini.

Ternyata di NUH tidak ada mesin radiasi yang nama nya Tomotherapy tapi di sana mesinnya bernama Electra Infinity. Aduh bingung lagi saya apa harus pindah rumah sakit. Tapi biaya yang dikeluarkan di NUH sudah banyak pula. 


Monday, September 8, 2014

Journey to Seek Doctor for My Wife

Journey to Seek Doctor for My Wife

After families and friends heard that my wife had cancer, many of them gave suggestions as to where to seek treatment. We got lots of information, which makes us confused. All intend to help. Thanks to all who care to us.

One of my wife's friends gave information that there is a seminar on cancer held by doctors from Singapore. I tried to call and the seminar from Parkway. We came to the seminar held at the hotel at   Asia Afrika Bandung .

The seminar explains about cancer in general and especially that affects many women. There was explained about treatments with chemo and radiation. Now there is a new radiation machine whose name TomoTherapy. This machine has a higher degree of precision.

After of the seminar, we were given the opportunity to meet with the doctors. They were very clearly explained the NPC that attack my wife. Treatment is primarily radiotherapy. After examining my wife physical condition, they estimate between stage 2 or 3. The doctor warned that to get radiation treatment, one of the most important requirements is a good tooth (dental healthy).

This dental problem then becomes concern and crucial problem during treatment in Singapore.

Both doctors recommend that examined MRI and pet-scan. But it should be done by hospital in Singapore. Than done in Indonesia continues to be repeated in Singapore. Wasting money.

We got the referral from Prof Helmi so my wife checked the CT-scan to ascertain what stage my wife at the time. I decided to get CT-scan first to make sure my wife was on what stage.
I tried to register to government insurance (BPJS) and seek hospital in Bandung which could CT-scan. I learned that a good hospital for a CT-scan is Borromeous Hospital and Sentosa Hospital.
I tried to Sentosa Hospital, but the hospital could not accept my BPJS because different regions and her CT scan tool is being repaired. Ouch

I tried to Borromeous Hospital. But the doctor was on a seminar. It could take up to 5 days after a CT scan to get the result. Because it was already Friday and the doctor on duty read CT scans are also being seminar. Ouch

After wondering, I recommended to Jakarta to for CT-scan for more sophisticated tools and quick also giving the result. Hospital name is MRCCC Siloam.

My friend suggested we try to go to Dr Eko Wahyu. Dr Eko practice in Yogya and has a lot to cure cancer patients. This doctor use curcumin to cure her patients. I tried to call to Yogya, it turns out that doctors also practice in Serpong once a month. Saturday's practice. Thank God! On the same day can see Dr Eko Wahyu and CT-scan also in MRCCC Siloam.

Finally Saturday we went to Jakarta and a CT-scan. Its results can be taken  tomorrow afternoon  said the hospital officials. Sunday morning we met Dr Eko Wahyu. After seeing the results of the biopsy, Dr Eko gave some kind of capsule for my wife drinks. According to Dr. Eko, cell carcinoma that its life spans of 4 months. Capsules from her to prevent the spread of the cancer cell and let the cell to die by itself. Because the doctor can not knew what stage was then she only gave partially given medicine, wait until outcome of the scan. Dr Eko is a good doctor and patient explaining about cancer. My wife was advised not to go near a smoker, banned food containing preservatives and MSG.

Later that afternoon we took a CT-scan. My wife has been advised that I should not read the results. Later on when we get in Bandung.
After up in Bandung we tried to read. We did not understand the results because many of medical terms that we did not understand.

My wife did not want to know what stage she at that time, just make depressed she said. The important thing is find her a good doctor, she want to be healed!

I then decided to take my wife to Singapore. I was looking for information to which hospital we must chose. At that time there are 2 options to NUH or SGH. Finally I choose NUH, because a doctor at SGH recommended by the agent was attending a seminar.

Only matters of choosing which hospital alone is stress. All I do alone. Frantic mind, it seems no one was helping. Very tired.

If there are readers who want consultation to NUH in Bandung no representative. Readers can send an email to aras.bdg@gmail.com

If there are readers who want consultation to SGH in Bandung no representative. Readers can send an email to bandung@singmedic.com

Perjalanan Mencari Dokter Untuk Istri Saya

Perjalanan Mencari Dokter Untuk Istri Saya

Setelah family dan teman-teman mendengar kalau istri saya terkena kanker, banyak dari mereka memberikan saran ke mana harus berobat. Kami mendapat informasi yang banyak, yang membuat kami bingung. Semua bermaksud membantu. Terima kasih untuk semua yang care kepada kami.

Salah satu teman istri saya memberikan informasi bahwa ada seminar tentang kanker yang diadakan oleh dokter dari Singapore. Saya coba telepon dan ternyata yang mengadakan dari perwakilan Parkway. Kami datang ke seminar yang diadakan di hotel di Jl Asia Afrika Bandung.

Seminar itu menjelaskan mengenai kanker secara umum dan terutama yang banyak diderita kaum wanita. Di sana dijelaskan mengenai pengobatan dengan chemo dan radiasi. Sekarang ada mesin radiasi baru yang namanya Tomotherapy. Mesin ini mempunyai  tingkat presisi yang lebih tinggi.

Setelah selesai mengikuti  seminar, kami diberi kesempatan bertemu dengan dokter-dokter tersebut. Mereka sangat jelas menjelaskan mengenai NPC yang diderita istri saya. Pengobatan terutama adalah radiasi. Setelah melihat kondisi fisik istri saya, mereka perkirakan antara stadium 2 atau 3. Dokter tersebut mengingatkan bahwa untuk bisa pengobatan radiasi, salah satu syarat terpenting adalah good teeth (gigi yang bagus). 

Masalah gigi ini kemudian menjadi perhatian dan masalah yang krusial waktu akhirnya kami berobat di Singapore.

Kedua dokter menyarankan supaya diperiksa MRI dan pet-scan. Tapi sebaiknya dilakukan oleh dokter di Singapore. Daripada dilakukan di Indonesia terus diulang lagi di Singapore.

Kami mendapat rujukan dari Prof Helmi supaya istri saya diperiksa CT-scan untuk memastikan stadium berapa istri saya saat itu. Saya pilih CT-scan dulu supaya sekarang istri saya berada di stadium berapa.

Saya coba mendaftar BPJS dan mencari rumah sakit di Bandung yang bisa CT-scan. Saya mendapat informasi bahwa rumah sakit yang bagus untuk CT-scan adalah Borromeus dan Sentosa.

Saya coba ke rumah sakit Sentosa, tapi rumah sakit ini tidak bisa menerima BPJS saya karena beda wilayah dan juga alat CT Scan nya sedang diperbaiki. Ouch

Saya coba ke rumah sakit Borromeus.  Tetapi dokter nya sedang seminar. Perlu waktu sampai 5 hari setelah CT-scan untuk mendapatkan hasilnya. Karena waktu itu sudah Jumat dan dokter yang bertugas membaca CT-scan juga sedang seminar. Ouch

Setelah tanya-tanya, saya dianjurkan ke Jakarta ke untuk CT-scan karena alat lebih canggih dan cepat juga hasil nya. Yaitu di rumah sakit MRCCC Siloam.

Teman saya menyarankan kami untuk mencoba berobat ke Dr Eko Wahyuni. Dr Eko praktek di Yogya dan sudah banyak menyembuhkan penderita kanker. Saya coba telepon ke Yogya, ternyata dokter tersebut praktek juga di daerah Serpong setiap 1x tiap bulan. Sabtu besok praktek. Puji Tuhan! Di hari yang sama dapat konsultasi ke Dr Eko Wahyuni dan CT-scan juga di MRCCC Siloam.

Akhirnya Sabtu kami pergi ke Jakarta dan melakukan CT-scan. Hasil nya bisa diambil besok siang kata petugas rumah sakit tersebut. Minggu pagi kami ketemu Dr Eko Wahyuni. Setelah melihat hasil biopsi, Dr Eko memberikan beberapa macam kapsul untuk istri saya minum. Menurut Dr Eko, sel carcinoma itu masa hidup nya 4 bulan. Kapsul dari dia mencegah penyebaran sel kanker dan membiarkannya mati sendiri. Karena belum tahu stage berapa maka hanya sebagian obat yang diberikan, sambil menunggu hasil scan. Dokter Eko baik dan sabar menerangkan mengenai penyakit kanker. Istri saya disarankan jangan dekat-dekat perokok, dilarang makan yang mengandung pengawet dan MSG.

Kemudian siangnya kami mengambil hasil CT-scan. Istri saya sudah berpesan supaya saya jangan membaca hasil nya. Nanti saja kalau sudah sampai di Bandung.

Sesudah sampai di Bandung kami coba baca. Kami tidak mengerti hasilnya karena banyak istilah yang tidak kami mengerti.

Istri saya tidak mau tahu dia kena stadium berapa, hanya membuat stess saja katanya. Yang penting carikan dia dokter yang bagus, dia mau sembuh.

Saya kemudian memutuskan akan membawa istri saya ke Singapore. Saya cari informasi ke rumah sakit mana sebaiknya berobat. Waktu itu ada 2 pilihan ke NUH atau SGH. Akhirnya saya pilih NUH, karena dokter di SGH yang direkomendasikan oleh agent sedang mengikuti seminar.

Hanya urusan memilih rumah sakit mana saja sudah stress. Semua saya kerjakan sendiri. Pikiran kalut, rasanya tidak ada orang yang membantu. Lelah sekali.
Jika pembaca ada yang mau konsultasi ke NUH di Bandung ada perwakilannya. Pembaca bisa kirim email ke aras.bdg@gmail.com
Jika pembaca ada yang mau konsultasi ke SGH di Bandung ada perwakilannya. Pembaca bisa kirim email ke bandung@singmedic.com


Saturday, September 6, 2014

God Allow My Wife Diagnosed with Nasopharyngeal Cancer (Nasopharyngeal Carcinoma)

God Allow My Wife Diagnosed with Nasopharyngeal Cancer (Nasopharyngeal Carcinoma)

Through this blog I want to share about my wife journey fighting nasopharyngeal cancer (nasopharyngeal.  My aim in writing this blog in order to share our experiences and help others 
My wife complained as there was water on the left ear. We tried go to an ENT doctor who said the most famous in Bandung.
At that time the doctor's diagnosis is because my wife to swim even though she got flu. Then there was some fluid from the nose that goes behind the eardrum. Then my wife's eardrum was injected. Liquids that are behind the eardrum aspirated.
My wife felt better after being sucked. But back to feeling uneasy in her ears after a few days. So we went back to the doctor for treatment. Doctors back in action and gave anti-biotic. My wife back and forth to the doctor for treatment was up to 6 times. Then my wife was complaining of pain in her left cheek near her ear. The Doctor too busy for many patients and practice until dawn. So the doctor less attention.
Because there is no progress and we think her doctor less attention we tried to go to another ENT specialist in Bandung. It turns out the same only given flu drugs and antibiotics.
After treatment 2 times to this ENT spesialist we tried to one large hospital in Bandung. My friend said there was a good ENT doctor there. But it turns out same action is given only flu, pain, and antibiotics medications. 
Because back and forth to the doctor is also not recover nurse told me that the doctor tried to another spesialist because she is the chief of the ENT departement at the hospital.
The chief doctor asked my wife to have an X-ray at head area because of pain in left  cheeks The doctor also gave flu medicine and  nasal spray.
After the X-ray result cameout the doctor recommended my wife to consulting  to jaw specialist. Due to the ENT doctor can not read the X-rays. Ouch why asking to got X-ray if she can not read the result. F*ck
Finally we consult the jaw specialist. The jaw spesialist gave diagnosed that my wife left cheek got pain because my wife's teeth was extracted  so that the process of chewing is not perfect so that the hinge cheek so shifted. It is advisable to attach dentures, the price is very expensive.
I did not understand how come my wife who is beginning her pain in the ear but should attach dentures?
Then my wife's friend recommended to see Prof Helmi in Salemba. She said this ENT specialist is a good one. Because we got not good results in Bandung so  we tried to go to Jakarta to see Prof Helmi.
Without prejudice anything we were going to Jakarta. After hearing my wife's treatment history Prof Helmi did endoscopy and found a big bump on the back of my wife's nose. Prof Helmi suggested to do biopsy and post eartube in my wife's ear so that its fluid exit.
We were confused and in shock at the time because we did not understand what it all about and its cost is also expensive. At that time because I want my wife to have a speedy recovery then I approved all actions that suggested by Prof Helmi.
After surgery finish, Prof Helmi  said we should wait for the results and hope his diagnos was wrong. Hopefully just a benign tumor. We had mixed feelings at the time.
Sunday through Thursday we pray that the good results of his test. On Thursday I called Prof Helmi. As it turned out, God willing another. He let my wife diagnosed with nasopharyngeal cancer. The world is crumbling to hear the verdict. We can only pray that the Lord was with us and heal my wife.
Sightings biopsy results:

We were asked to family and friends, where we had to go. We were told for nasopharyngeal cancer treatment we must go to Singapore or Hongkong. Because Hong Kong is far and said the medical costs are more expensive then we choose to Singapore.
Why not seek treatment in Indonesia? Frankly I was disappointed with doctors in Bandung. My wife's late diagnosis in Bandung. Diagnosis weird like pairs of dentures. Also whole family suggest to have treatment in Singapore. Honestly we had not enough money for treatment there. But I want the best treatment for my wife.
I do not mean to discredit the doctor or hospital in Bandung. I do not mention names here. I create this blog to share with readers the journey of all my wife's treatment experience and hopefully be a blessing for readers

Istriku Diijinkan Tuhan Menderita Kanker Nasofaring (Nasopharyngeal Carcinoma)

Melalui blog ini saya mau berbagi mengenai penyakit kanker nasofaring (nasopharyngeal carcinoma) yang diijinkan Tuhan menyerang istri saya tercinta.

Tujuan saya menulis Blog ini supaya dapat berbagi pengalaman dan membantu orang lain 

Istri saya mengeluh seperti ada air di telinga kiri. Kami coba berobat ke dokter THT yang katanya paling terkenal di Bandung.

Saat itu diagnosa dokter adalah karena istri saya berenang walau dia sedang sakit pilek. Maka ada cairan dari hidung yang masuk ke belakang gendang telinga. Kemudian gendang telinga istri saya disuntik. Cairan yang berada di belakang gendang telinga disedot. 

Istri saya merasa lebih baik setelah disedot. Tapi kembali merasa tidak enak di  kuping nya setelah beberapa hari. Jadi kami kembali berobat ke dokter tersebut. Dokter kembali melakukan tindakan tersebut dan memberi anti biotik. Istri saya berobat bolak balik ke dokter itu sampai 6x. Kemudian istri saya mengeluh sakit di pipi kiri dekat telinga. Dokter terlalu sibuk karena pasien banyak dan praktek sampai subuh. Sehingga dokter kurang perhatian.

Karena tidak ada kemajuan dan kami rasa dokter nya kurang perhatian kami coba berobat ke profesor spesialis THT lain di Bandung. Ternyata sama hanya dikasih obat flu dan anti biotik.
Setelah berobat 2x ke profesor ini kami coba ke salah satu rumah sakit besar di Bandung. Kata teman saya ada dokter THT bagus di sana. Tapi ternyata tindakan yang diberikan sama saja hanya obat dan anti biotik. 

Karena bolak balik ke dokter ini juga tidak sembuh perawat jaga bilang supaya coba ke dokter X karena dia adalah kepala bagian THT di rumah sakit tersebut.

Dokter kepala ini menganjurkan istri saya untuk rontgen kepala karena sakit di pipi. Dokter juga memberikan obat flu dan obat semprot untuk hidung.
Setelah hasil rontgen keluar istri saya dianjurkan konsultasi ke dokter spesialis rahang. Karena dokter THT tersebut tidak bisa baca hasil rontgen. Aduh apa pula ini minta di-rontgen tapi tidak bisa baca hasilnya.

Akhirnya kami konsultasi ke dokter spesialis rahang. Analisa dokter pipi istri saya sakit karena gigi istri saya ada yg dicabut sehingga proses mengunyah tidak sempurna sehingga engsel pipi jadi bergeser. Disarankan untuk pasang gigi palsu, harganya juga mahal.
Saya tidak mengerti bagaimana mungkin istri saya yang awal nya sakit  di kuping tapi harus pasang gigi palsu?

Teman istri saya anjurkan ke Prof Helmi di Salemba. Katanya ini dokter bagus. Karena merasa di Bandung tidak ada hasil kami coba ke Jakarta ke Prof Helmi.

Tanpa prasangka apa-apa kami berangkat ke Jakarta. Setelah mendengar riwayat berobat istri saya Prof langsung melakukan endoskopi dan menemukan ada benjolan besar di belakang hidung istri saya. Prof Helmi bilang supaya segera diambil tindakan biopsi dan pasang eartube di telinga istri saya supaya cairan nya keluar.

Kami bingung dan shock saat itu karena tidak mengerti apa itu semua dan biaya nya juga mahal. Saat itu karena ingin istri saya cepat sembuh saya setujui tindakan yang Prof Helmi tersebut anjurkan.

Setelah operasi dokter bilang harus tunggu hasil dan bilang semoga diagnosa dia salah. Semoga hanya tumor jinak. Perasaan kami sudah campur aduk saat itu.

Minggu sampai Kamis kami berdoa supaya hasil test nya baik. Waktu Kamis saya telepon Prof Helmi. Ternyata Tuhan berkehendak lain. Dia ijinkan istri saya terkena kanker Nasofaring. Dunia secara runtuh mendengar vonis tersebut. Kami hanya bisa berdoa supaya Tuhan menyertai kami dan menyembuhkan istri saya.
Penampakan hasil biopsi :




Kami bertanya ke family dan teman-teman, kemana kami harus berobat. Kami diberitahu untuk kanker nasofaring yang bagus itu Singapore atau Hongkong. Karena Hongkong jauh dan kata nya biaya pengobatan lebih mahal maka kami pilih ke Singapore.

Kenapa tidak berobat di Indonesia? Terus terang saya kecewa dengan dokter di Bandung. Istri saya terlambat diagnosa di Bandung. Diagnosa aneh-aneh seperti pasang gigi palsu. Juga keluarga besar menyarankan berobat ke Singapore. Jujur secara ekonomi berat untuk berobat ke sana. Tapi saya ingin pengobatan terbaik untuk istri saya.

Saya tidak bermaksud mendiskreditkan dokter atau rumah sakit di Bandung. Saya tidak menyebutkan nama di sini. Saya membuat blog ini tujuannya berbagi kepada pembaca semua pengalaman pengobatan istri saya dan semoga menjadi berkat bagi pembaca

Demikian perjalanan awal waktu istri saya terdiagnosa kena nasofaring carcinoma.