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.

 http://www.umf.org.nz/licensees

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.

https://www.healthxchange.sg/forums/support-groups/nose-cancer/Pages/nose-cancer-support.aspx

NPC group dari NUH hospital :

http://npconeheart.blogspot.sg/?m=1

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 :

http://nosecancer.blogspot.com/?m=1

Buku yang bagus membahas head & neck cancer :

https://www.dropbox.com/s/cwb21ldx7mysm2f/0gw64.Patients.Guide.To.Head.And.Neck.Cancer.pdf?dl=0

NPC support group di FB (Nasopharyngeal Carcinoma Awareness) :

 https://www.facebook.com/groups/41426522671/?fref=nf

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:

https://youtu.be/2VZW6Xn8-JM

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.

 http://www.umf.org.nz/licensees

This website about manuka honey and 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

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.

https://www.healthxchange.sg/forums/support-groups/nose-cancer/Pages/nose-cancer-support.aspx

NPC support group website from NUH hospital:

http://npconeheart.blogspot.sg/?m=1

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:

http://nosecancer.blogspot.com/?m=1

A good book addresses head & neck cancer:

https://www.dropbox.com/s/cwb21ldx7mysm2f/0gw64.Patients.Guide.To.Head.And.Neck.Cancer.pdf?dl=0

NPC support group in FB (Nasopharyngeal Carcinoma Awareness):

 https://www.facebook.com/groups/41426522671/?fref=nf

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.