Another birthday!

Alhamdulillah for another birthday :-) It was celebrated a little bit early over the weekend when everyone in the family was around.  A nasi arab treat at Saba' Restaurant, and a surprised birthday cake at night.  The kids planned the surprise all the way.  All this while, whoever's birthday, I would be the mastermind ~ looking for cake and set up the event.  But now, when the kids are grown up, they have the pleasure of arranging one.  Frankly speaking I did not know when they had meetings to plan for it.  All that I know, when I came downstairs to watch TV, they suddenly sang the birthday songs and we then enjoyed the cake.  It was a banana cake with real banana in it.  It's really 'yummeh' and it does not last long in the fridge.  The kids are requesting another one :-)  when everyone is around, we will get a bigger  one next time.

 

And what's the present from Yati to Yati this time?  It's certainly the B17 that I have reordered recently.  While enjoying this year's birthday treat, I'm determined to get better and stay healthy all the way so that I can be of service to my family.  Mission to treat my morquio kids are not done yet and I sincerely hope they will grow bigger and be independent as the rest of their siblings. 

Actually when birthday comes, the one that I really want to see is my mum.  Can't wait to see her this weekend to thank her for bringing me into the world, guide me all the way, and constantly pray for my health and success.

As for my current health, on top of the B17, recently I have started to take the asparagus like I did way back in 2009.  It is more convenient for me as I can get the supply from Jaya Grocers nearby; steam them for a while & blend them to turn into a puree.  Every morning and night, just take two tablespoons, mix with plain water and drink.  It has shown a positive effect, but have to bear with the healing crisis during the first few days of consuming it.  My BP has also turn to normal now.  Alhamdulillah...


   

Mourning and Gloomy September

Glad that September is almost over.  It has been a mourning month with the demise of two of my 'Fuda treatment' friends, one during end of August and the other, a week after.  Al-fatihah to them ~ Moga roh mereka di cucuri rahmat.

Gone two, many more has contacted me for advise.  Wahhh, I suddenly become a consultant eh! I'm just sharing my experience and enlighten them when needed.  Having been in the same boat, I know how they feel and some words of comfort will certainly cheer them up.  Some say that I'm an inspiration and hopefully it will motivate them to get better.  Sometimes, I was out of words too to console, especially when informed that the whole lung has been filled with tumors, the condition is very weak, and no appetite to eat...duhhhhh...If the person has strong will power to live, in shaa Allah he or she will survive.  But then, if it is time already, the sickness will just be the cause...

As for me, I feel very good, enjoying every minute of my life, with no pain to grumble with.  But yesterday I felt pain on my chest ~ due to haze and maybe overload of meat during the Eid Adha which cause inflammation.  I had some turmeric capsules yesterday to counter it and Alhamdulillah it works.  Today the pain is gone :-)  Well actually, once we have the big 'C', it will forever be with us till we die.  It is the matter of managing it so that we can live our lives at ease and certainly with NO PAIN!

It is wise to divert the attention to other things rather than concentrating solely on the big 'C'.  I'm now on a mission to treat my Morquio kids.  Recently my friend introduced me to a chiropractor nearby, and we have made a few trips there.  The kids showed good progress and they are now taller by two cm!  Good enough eh.  The Sifu said, looking at the spine, the kids can grow taller, and I pray that it will come true.  Surgeries won't do them any good ~ proven with the big sister who is now on wheelchair, and I'm not going to let the same thing happen to the little sister.  The only matter is ~ per treatment costs RM220 and for two??? treatment is every 4 days or so... Poket koyak jugak gini macam :-)

With my Morquio kids



Lastly, I hope that the haze season will be over soon.  Last night I checked, my O2 level was 96, which was usually 99.  Panic a bit woooo.  I also pity my friends who are having problem with breathing especially those with asthma.  Stay indoor everyone! 

B17 regime

Fasting month and Eid went in a bliss.  Look at the happy faces during raya :-)

 

 

I received my b17 package around the first week of Ramadhan.  Rather conservative buying eh, first try with the supplier, I though I should not overdo la eh, kalau barang x sampai, menangis beb!

 

 

 

I had daily shot of 3 grams of B17 at a local clinic right after work.  Around 4.30 pm, wahhh cancer cells were starving too at that time eh! 14 shots altogether during fasting months (minus the weekends) and Alhamdulillah it shows a positive effect.  Since the screening for the hitv immunotherapy, with the tests and the touch to measure the tumor, it has started to bleed.  But now, my tumor has stopped bleeding.  I had another six shots after raya which were done while fasting too.  Pains on my back has gone, gone forever I hope! after this, just continue with two or three tablets of 500 mg amigdalin and some apricot seeds too in between.  They say must take other vitamins like zinc, vit C etc to make the b17 work.  Of course I'll supplement myself with those too.

 

The cream is effective as well, I apply on the affected area twice daily.

 

What's next?  Well, just wait and see and cherish every moment.  There is no doctor's appointment to look forward to, I'm fully responsible in taking care of myself now.  Of course I have my benchmark;  I have gone through bad times and I know the feeling. So just look for the signal and follow my intuition on what's next.  As at now, health wise I'm alright.  I can still drive long distance day or night; and infact, during third day of raya, I drove down to Kluang Johor for an engagement ceremony.  My husband has a panic attack syndrome whereby he cannot drive on the highway ~ sudah kene sampuk dengan hantu highway eh :-)  Kids can drive but they are not allowed to, so the steering is mine :-)

 

As long as I can perform my daily routine like sending my kid to school, driving to work, do a bit of cooking and household chores, perform my prayers, recite Qur'an at ease, I'm alright and Alhamdulillah.  Just pray that USD won't go further up or rather, ringgit won't go further down :-(  So much that I want to, trip to Fuda has to be postponed due to exchange rate.  As for now, duduk ontok2 yo lah kek sini :-)

 

 

 

 

 

 

Admitted into hospital Ramadhan again

Alhamdulillah, well and fine, and able to see another Ramadhan :-) I'm able to fast at ease, cook food for the family, perform tarawih prayer at the masjid at ease; basically leading a normal life.

Relating to the previous entry, Pak Andak Gerik doesn't work with me eh.  Too many pantang, I just cannot cope with it :-) HA HA HA

Soon after, I came across an ad of a local hospital looking for clinical trial patients for HITV immunotherapy.  I was a bit excited about it and approach them to enroll.  As usual, I have to go through many procedure to see if I'm qualified.  I had mammo for the unaffected breast, ultrasound, and PET CT scan.  A few trips made to the hospital and in the end, the doc emailed me telling me that I'm not qualified because I have done iodine seeding before.  The iodine seeding was done last year and it could not possibly be in my body anymore.   Well, it could be a blessing in disguise ~ while waiting for them to say yes or no, I received news that a friend who did the same procedure at a private hospital here, passed on.  The night before, he sent me the image of his PET CT showing the before and after HITV.  His cancer is almost cleared, yet he did not survive.

So what will be my plan b?  Looking back at the treatment that I have gone through so far, I can say that the B17 injection was effective.  Therefore, I have ordered my own supply through online and waiting for it to get here.  I figure, if I do it during this fasting month, it would be more effective.  During fasting month, cancer cells are starving too and while they are at a weaker state, I give them B17, hopefully they will die off.

In the meantime, I'm trying the butterfly tea, from the butterfly leaves.  News has spread around that the leaves, when boiled, can cure lots of sickness and there are also success stories on cancer patients too.  Why not give it a try eh...

Pak Andak Gerik

Some of my friends were curious to know the outcome of my last visit to the onco clinic.  Well, nothing much from the visit; they merajuk already to treat me coz' I declined the medicine they recommended.  Hence, they refuse to order a ct scan for me.  Never mind, too much radiation from the ct scan is not good anyway :-)  As long as I'm healthy, I feel healthy, it is a blessing already.  They don't even set my next appointment date; they say if I need to go to the hospital, just call.  Like that punya attitude also ada la ~ haiyyyaaaa, gini macam how am I going to inform my employer of my current state?  Like this I can tai chi all the way la :-)

No worries, I've been taking care of myself since day one.  I don't take any hospital medication now but I supplement myself with the herbal products namely himalaya products and shaklee of course.  I tried cellmaxx recently, but it did not ngam with me, pain here and there again, so no point of taking.  Sari agegard also tuang-tuang now.  I had my blood test done recently for CA15-3.  The reading was 40.0 U/ml.  Normal should be below 39.1.  I'm a little bit above the normal eh, but still ok la, my reading at Fuda last December was 46.  Still got improvement maaaaaa...

I'm planning to go to Fuda again for the cancer stem cell vaccine.  But at this moment, $$$ doesn't permit.  I have heard a lot of success stories about Pak Andak Gerik ~ stage 4 pun boleh baik.  Wah!  apa kata I give it a try.  Actually I have heard about this since last November, but since I have already bought a ticket to Guangzhou, I thought I should try this Pak Andak after I came back from Fuda.  I managed to convince my husband to go last weekend.  Driving from my place to Gerik was like 4 and a half hours, not so bad eh, but I myself have to drive from Behrang to Kuala Kangsar and from Kuala Kangsar to home coz' my hubby was not feeling well.

That is Pak Andak's house, easy to find coz' his Singaporean patient has kindly donated signboards at junctions to his house :-)

We reached Gerik around 12:45 pm, went straight to Pak Andak's house to get the number.  Our garmin was very reliable this time and brought us in front of his door.  There was no one to entertain us, just a list of names and guess what, I got no 87.  Quite a long list eh, and those names are from all over, mostly Kelantan, Terengganu, Selangor, & Penang.  The treatment starts at 3:00 pm til midnight (everyday except Monday and Tuesday).  So we thought we'd better check in the hotel first, freshen up and get something to eat.  My husband has already booked Sri Inai Inn, so we checked in.  The receptionist kind of know already we came for treatment and we, being over peramah, probe further about the treatment.  Guess what, this Inn is fully booked every time because of Pak Andak.  At times, when some dato'-dato' came for treatment, they had it at the hotel, import Pak Andak over (but of course, after midnight when Pak Andak finished treating others at his home).  As for Pak Andak's patients, some came in an ambulance, on hospital beds, wheelchair,  the hotel staff would know how to handle.  They can even prepare meals for orang sakit :-)

That's the Inn :-)

We had lunch at the nearby restaurant.  I had rice with fish asam pedas and some ulam-ulam.  I was quite surprised to see the bill but when we asked the owner what was the name of the fish, we understood why.  We had tenggalan fish, an exotic fish, fresh from the river.  It was really tasty and worth it!  After lunch we went straight to Pak Andak's house to find out what number was on.  It was really pitiful to see the people who came for treatment; some of them are still with tubes on, some with long surgery scars, some with canes and true enough, they wore sour faces, no mood as they were in pain, hoping for cure.

People waiting for treatment.

We registered at Pak Andak's kitchen, collected my number and asked them when would the treatment be.  They advised to come back after Isyak prayer.  We went back to the hotel, and get some rest after touring the town.

After dinner, we went back to Pak Andak's house.  So the story begins.  His treatment is to transfer the sickness to a chicken.  We don't have to bring our own chicken as Pak Andak and the crew will source out the chickens from the village.  Whoaaaa 100 over patients a day, that many to source out, habis ayam satu kampung :-)  But we still have to pay for the chicken and the price is depending on the weight of the chicken.  As for me, on the first treatment, I got the 'virgin' chicken and it costs me RM18 only.   On the second treatment the next day, I had a cock, a real big one, and it costs me RM30.  After treatment,  these chickens will be freed and usually they will die within 3 days.  At times, for a really cronic patient, during treatment, the chicken died already, and they will have to find a replacement to continue the treatment.

Besides chicken, we can buy plain water sourced from the mountain for Pak Andak to recite some doa, and we bring home to drink and to wipe at the painful area.  The 5 liter bottle costs rm7, and the 1.5 liter bottle costs rm3.  The water tastes good, full of minerals.

Since there were many patients, it's impossible to treat one by one, so he did it in groups.  One group consists of 10 people, separating men and women.  We gathered in a room, Pak Andak will recite the doa to make the 'air tawar' first, then only he will treat one by one using the chicken with Mak Andak's help.  He will scan the area with cancer, collect them at one area (in my case, the br**st) where he will put the chicken for a while there.  I was worried that the chicken would poke my face, but trust  me, the chicken was obedient :-)  When done, I just pay for the chicken and cengkuk/sedekah some to Mak Andak.  They did not set any price for treatment, just sedekah how much we desire.  How much does it cost to treat cancer at the hospital? A bit of sedekah to Pak Andak is alright la eh, to honor his expertise.

By the time I'm done, it was already 11:30 pm.  The earliest we can register for the treatment next day was at 2:00 am.  So we decided to go back to the hotel and tried to get some sleep.  When we came back at 2:00 am, some have already registered and I got number 22, hoping to get treatment before night time so that we can make the trip back home before it gets dark.

On the next day, after check out, we went straight to Pak Andak's house.  I got into the treatment room around 4:00 pm.  This time around, Pak Andak said, "tinggal sikit lagi ni eh, lepas-lepas ni badan akan rasa ringan".   In shaa Allah... Usually after first treatment, we will feel painful, but as for me, I just felt my br**st throbbing but after drinking the water, it feels alright.  At the point of writing, I can also feel pain, but manageable.  There are some pantang that we have to adhere, the main one is, not to take any hospital medication.  The rest of the list is as attached below.  The pantang period is around 2 weeks, some say 3 months.  But as long as we feel alright, just go ahead and eat.  Actually I don't like to pantang (refrain from eating), I did it once and my weight dropped until I was really skinny ~ 46 kg.  That was really scary! Some items in the list, like pisang (banana), which is my favorite, I cannot refrain from eating, good source of potassium eh.  What more pisang goreng ~ certainly my favorite!

So much about treatment in Gerik.  Pray that it works so that I don't have to make trips to Fuda again :-)  Even if it doesn't, it was a great experience and certainly it will be in one my chapters in my book.  When? Just wait and see...






  


    

Celebrating 24th Wedding Anniversary

Pengantin lama :-)

Alhamdulillah, blessed with 24 years of marriage...pray for many more years to come.  The above photo was taken during my cousin's wedding last Saturday.  It was a kampung style wedding with rewang, own cooking and of course the pelamin was homemade too :-) Not bad eh!

Being a kampung style wedding, lots of things need to be done.  Luckily we are from a big family, each person contribute a bit, and we managed to make it happen.  On Friday morning, I help put up the pelamin, we make do with what my aunt had like curtains and so on and the result was not bad :-)
In the afternoon, I helped clean the chicken ~ 70 of them! It was a dirty job but somebody has to do it.  The next morning, I helped in the kitchen, preparing food for almost 1000 guests.  The point is, I have the energy to lend a hand.  That was a proof that my health has improved and I thank Allah for it, Alhamdulillah.

Family from my mom's side

Spot me if you can :-)  This is just part of the members from my mom's parents.  It was quite tough to gather everyone in the hot sun! Uncles and aunties as well as cousins were happy to see me well and healthy.  This wedding acts as a reunion for us and we really enjoyed each other's company.  Actually the wedding reception is for my mom's youngest sister's son.  The wife must be amazed of the big family and she sure wouldn't remember each and everyone of us.  I myself don't get all the names of my cousins since we usually met during raya time only.  But now, thanks to the advanced technology whereby we can communicate through Whatsapp ~ a group has been created :-)

From my mom's side, there was less cancer occurrence.  Only my sister and I got cancer, and my cousin's son has leukemia.  14 of 15 siblings of my mom, are still alive ~ common sickness are osteo-arthritis for the ladies, and back pain for the men.  Another common occurrence was stone in gall bladder of which, some have had them surgically removed.  My grandfather died at the age of around 100, and my grandmother died at the age of 80 plus.  The eldest, my mom is now 78.  Hopefully we will follow their trait and live longer even though we got cancer.

Around ten days from now, it will be 6 years since I was diagnosed and confirmed with breast cancer.  Health wise, I'm alright.  My next check up will be on 18/3/15, when I will request for a CT scan to see the progress so far.  The new semester will begin soon and I hope I will not be stressed out with the workload...

Follow me to fight against cancer - Prof Xu

Latest pic - kawan belanja makan la, kat café Canseleri

Few weeks in the office, quite enjoy seeing faces of my colleagues ~ their expressions are like seeing someone rising from the dead :-)  hah! stage 4 can recover meh???

With Allah's will, and strong determination to get well, in shaa Allah, whatever stage you are, you will recover.

Nothing much at work, just preparing for next semester, after two years leave, banyak sudah lupa beb! really need to get back in track.  In the meantime, I'm translating the book by Prof Xu - Follow me to fight against cancer.  I'm delegating the other book (Nothing but the truth) to my daughter since she is on her semester break now.  Don't know how much can she do but at least I can get something going.

In the meantime, if you need the English version of the books, I have some copies with me.  Whatsapp me at 014-371 4574 (data line only).  It's rm20 per book, and postage is rm6.  I can send poslaju to you as well.  Fuda is kind enough to let me distribute the books, which can help me cover my medical expenses.  Every month got to pay credit card for the medical expenses charged, surely no new clothes and nice tudung for me eh!

On another note, the books serve as a very good eye opener on the modern technologies available in treating cancer now.  Too bad, there are doctors out there who thought that cryo is to freeze the cancer cells to stop it from spreading, which is not the case. It actually kills the cancer cells coz' cancer cells are fragile too, if its too cold, they will die, if its too hot, they will die too.  What I prefer most, is the less aggressive treatment, I still have both bouncing.  Had I follow the conventional treatment of mastec, chemo & radio, I may have lost one.  Not balance eh :-)

I enclose the pics of the books and their contents.

 

 

 

I hope this will be an eye opener for the doctors here too.  Go and learn these new technologies and adopt them here.  These technologies are not in China only ok, it's worldwide.  Since China is the closest and the cost is rather affordable, China it is!  With more and more people becoming aware of this less aggressive treatment, more and more people are seeking treatment abroad.  Too bad we have to let the money flow out of our country.  But what to do???

 

Another trip to Guangzhou

Six months after my treatment in Fuda Cancer Hospital, I had the opportunity once again to go to Guangzhou for immunotherapy treatment. Immunotherapy is a procedure to strengthen the immune system in the body. For cancer patients, their immune system is not as strong as ordinary people whereby the t-cells that act as soldiers to destroy cancer cells have been reduced. For this immunotherapy, 60 ml of blood is taken from our body, get the t-cells and culture to propagate the t-cells.  After eight days, the cultured t-cells will be infused back into the patient's body. Hopefully the bone marrow will then make new cells with lots of t-cells, which in turn, will destroy the cancer cells in the patient's body. The body's immune system will function normally and will destroy cancer cells naturally.  As the result, the patient will be free of cancer.

In front of Fuda South

My trip to Fuda this time took two weeks.  This time only me and my sister went there and we took Airasia and as usual, the representative from Fuda came and picked us up at the airport.  We arrive at the hospital at night and felt a bit strange because it was not like the hospital we experienced before.  The next morning we knew that we were in South Fuda, the first Fuda hospital, rather than in North Fuda.  Apparently, doctors and nurses on the 6th floor of Fuda North, moved to South Fuda and we followed suit.  Facilities offered are approximately equal to Fuda North, but there is no halal corner in Fuda South.  Therefore, we have to cook our food at the roof top of the hospital building.

When a CT scan was done, they found a lump of 3.9 x 2.7 x 2.4 cm.  Possibly during the first cryo-run, there was still lagging nodule which has grown bigger.  I did not take the hormone treatment or oral chemo after the first cryo, which explained the existence of another lump.  Since I still have my menses every month, and my cancer is estrogen and progesterone positive, it gave the opportunity for the tumor to regrow.  Cryo was performed on December 17, 2004.  This time I did not opt for iodine seeding, on the other hand, they put in alcohol to cater for the lymphnode area.

The cryo was performed on Wednesday, and in the next three days, they infused some medication for fast recovery. Oddly enough this time, both sides of the breast engorged though we did not feel any pain.  While waiting for the t-cell to culture, we flew to Beijing for three days to visit the Great Wall of China and some other attractions in Beijing.

BRCA Stage 4 sisters manage to climb the Great Wall of China :-)

At Forbidden City

At Summer Palace

When we return to Guangzhou, my swollen breasts have experienced a bit of infection.  My affected breast was red and swollen and secrete watery discharge with unpleasant smell. I was given drips of antibiotics to address the problem.  In addition, the cultured t-cells were also infused.  The immunotherapy package that we chose was the cheapest one which costs RMB18,000.  Therefore, only two bags of t-cells drip was given.  The infusion went smooth, and I pray that the immunotherapy in successful, and my immune system will become stronger to fight my cancer.

With Prof Xu and the team

While at the hospital, Prof Xu, the chief President of Fuda, who is also a liver cancer survivor, came to my room for a visit.  He has written two books on treatments and success stories encountered in Fuda, namely "Nothing but truth" and "Follow me to fight against Cancer".   I am honored to be given the opportunity to translate the books into malay.  He said. "when it's done, we can print it and you can distribute it to help cover your treatment cost in Fuda".  How nice :-)

I'm now back at work.  Colleagues who have not seen me for quite sometime, were amazed that I got through this ordeal and I look really healthy and glowy.  To the readers out there, I'm just sharing my experience in this blog and I don't intend to persuade anyone to go and have treatment abroad.  I did it because it is convenient for me and I prefer a less aggressive treatment.  You are free to explore it, and in fact, three of my friends are having their treatment in Fuda now.  It is not for sure that you will get 100% cured, after all, it's Allah's willing that I'm at the stage where I'm at now.

I still go for check-ups at HKL.  In fact, I have an appointment with my onco next week.  To see the success of the immunotherapy, is quite early to tell.  As long as I'm fine and the cancer does not bother me too much, I'm thankful ~ Alhamdulillah...I still have both breasts bouncing :-)