Wednesday, April 13, 2016

If This Were My Last Goodbye

A lot of people have this wrong perception of how all cancer patients should look like: pale, frail, skinny, bedridden.  Many think, "Oh, you look fine!" and assume those with cancers are perfectly alright and should be able to handle and do things like any other healthy person without complaints. Well, yes, we sure can (although we sometimes 'secretly' get tired easily). 


Hi! My name is Sylvia. I am 29 years old. I am currently in advanced stage Triple Negative breast cancer. My cancer has spread to my left pleural area even after chemotherapy and bilateral mastectomy plus removal of three affected mediastinal lymph nodes. I am constantly achy especially on my upper left side of body even after my surgeon had drained out 1.7 litres of pleural effusion and done a pleurodesis (sealing of my pleural space), and we do not know why yet (Doctors could not find any sign of tumor from my scans).

I am writing these to speak my mind, honestly and straight from my heart. I would like and hope to speak for all cancer patients, too.

It is not a norm for a real sick person to go around telling people, "I am terminally ill." or "I am dying soon!" So, we need to always be aware. Be kind and compassionate. Be observant and considerate. Just like how we greet and ask how any of our other friend is doing, be caring and check up on your loved ones and friends. No, it is not the sick person's fault for not informing you, without you ever asking or being concerned, when something serious happened to them.

Stop, please stop with the belief or theory of alternative treatments for cancer. Stop telling people diagnosed with cancers that conventional treatments, i.e. surgery, chemotherapy, radiotherapy are bad and are medical scams and that we should never go for them and alternative natural therapies cure. I was once a stubborn, very confused and foolish advocate of such beliefs. Let me share with you my experience.

When I first got diagnosed with Triple Negative breast cancer in 2013, it was stage 1. I underwent a partial mastectomy and left axillary lymph nodes dissection. I was talked into not going for chemotherapy. I ran away from my oncologist and shunned him even when he emailed me to further explain. I was bought into the idea that natural alternative treatment cures. I did ketogenic diet, took some herbal medicines and supplements and juices.

Then I got pregnant with my third child, Kaitlyn. Towards the end of my pregnancy, I noticed lumps on my remaining partial breast. I thought at first, that they could be blocked milk ducts. After delivery, I tried to breastfeed Kaitlyn from my other breast. I began to notice my lump (the initial cluster of small lumps had now grown into one) had gotten bigger. I later went to the doctor and got referred back to my initial surgeon. He took biopsies of my lump. The result came back (and he was sad to convey to me): recurrent Triple Negative breast cancer. He scheduled for CT scan and then surgery, followed by chemotherapy.

Once more, I had people coming to me to tell me not to go for all those. They asked me to try out the alternative therapy. They even told me that CT scan emits radiation and is not good and asked me not to go for it. So, I ran away from my doctors, again. I kept running away, so much so that when my oncologist saw me during my admission (or rather, quarantine) for being severely neutropenic after my first cycle of chemotherapy, he told the nurse, "She has a habit of running away from doctors, except for Dato Yapp (my surgeon). I don't know why. She is like Houdini. Now you see her, now you don't." 

I began with my natural therapy. Those people told me they would be supporting me and cheering me on all the way. I was a complete vegan for over 7 weeks - no salt, no oil, no fats, except for some potassium salt and spoonfuls of cold golden flax seed oil, and selected vegetables and fruits. I could only have brown rice or quinoa or sweet potatoes once or twice per week. I had to do coffee enema detox everyday and take certain supplements and tea and had loads of fresh juices (a lot of carrots) per day. I lost a lot of weight, became skinny and very weak. I turned orange - not even yellow, but orange! My skin was very sensitive and I bruised and bled easily. I was so miserable and alone on that journey. There were many times I had to starve myself because I was not allowed to consume any other food outside and would need to wait till I got home to prepare and cook my own food (juggling between work, three kids - one infant, coffee enemas and the many juicing). As I was munching away on my greens one day, I was thinking, if I had to continue on like this with my life even after, say, I got cured by this, I do not think I would want to live this way for the rest of my life! Oh, and my lump grew bigger, faster and the skin covering it was red and appeared angry. I was angry. I would feel pain at times but when I asked my 'supporters', none of them could give me exact answer to my whys. Instead, they kept telling me to follow the therapy strictly and asked me to read up more. I read a lot and I later found out that most who did not go for conventional treatment, especially for those with Triple Negative type, did not fare well. They ended up dead faster.

So, I prayed harder and asked God to show me or tell me what He wanted me to do. Even if He wanted chemotherapy for me, I said I would go for it (because I was so stubborn and was in such dilemma and turned the real medical experts down initially). God spoke to me. He spoke to me through our Bishop Cornelius (because I told God I may be slow, so please be more obvious with me and if possible, speak to me through a spiritual director). I went for mass that Friday and the readings and homily happened to be about listening to the voice of God without distractions. The devil uses many things to distract us from God. We live in a busy and noisy world that we often miss out God's soft promptings. After mass that day, Bishop spoke to me, away from the crowd and told me, "Go. Go for (conventional) treatments before it is too late."

I dropped all pride and contacted my doctor whom I turned down and ran away from (I even lied to him I was going elsewhere for treatments). I told him I wanted to go back to follow suit with his plan of treatment(s). He never questioned me and even got me an immediate appointment. He scheduled for my CT scan and blood tests - all done within a day. He later had me meet up with oncologist from the National Cancer Center here.
CT scan showed my cancer was at stage 3b. My lump was too big for a straightforward mastectomy and the cancer had spread to some lymph nodes around. So I had to go for neoadjuvant chemotherapy to shrink it before surgery. Praise God that all other organs were clear. Hence, I started on my conventional treatment journey. Looking back, I am very glad and grateful to be under such thorough care and close monitor from dedicated teams of qualified doctors and nurses. Thanks to the Brunei government, I am not even paying for my treatments done locally.

So, please. I know many of you may mean well, but please be very aware when you try to sell your ideas, especially on alternative treatments and being against conventional therapies which I realized have indeed helped save and prolong many more lives (when detected and treated early).
You may end up confusing and stressing out or killing a cancer patient. By all means, do try your alternative therapies yourselves when you do not already have cancer. Of course, a well-balanced diet and healthy lifestyle are essential for everyone, whether sick or not.
I get some people telling me I should do this or that, or I should not eat this or that and they shove these ideas down my throat, shutting me up even when I try to explain my point of view. When I told my personal experience with alternative treatment, I even had people telling me, "You sure?! Maybe you didn't do it long enough! You should have continued on longer!" Yeah, and I may be dead long ago if I did! 
Frankly, when one does that, it makes me feel like a failure, that whoever you are, I have failed you by getting cancer, because I do not know my own body as well as you do and I have not been taking good care of it because I have not done as you say. So, thank you, but no, thank you, really.
Ironic, isn't it, that when you say you have cancer, suddenly people around you turn into cancer experts overnight. They want to have their say in your life and decisions. Hello, where were these people when I did not have cancer? What is even more ironic is the fact that these people never had cancer themselves. Most just 'read' or 'heard' uncertified claims of people being cured alternatively.

I still believe in the very end, it is God who heals. He allows everything to happen for good reasons. God is good and all His plans are always perfect. Let go and let Him be God. Man can plan all they want but in the end, it is God who is in control. He makes all things beautiful in His time, in His ways. 

So, I accept my cross and pray for the strength and grace to carry it through till the end, worthily. Whatever comes, I thank God for all that He has already blessed me with. Yes, I used to live with regrets and doubts and always wondered about the 'would have, could have and should have's but if I were given another chance, I would do it all over again. My trials have helped shape me into who I am today. God has been so ever patient, faithful and gracious to me. There were many things I did which I am definitely not proud of and although I had disappointed God and my parents, He in turn, has blessed me so much more than I ever deserve. To be able to wake up every morning and to be given another brand new day to live and to make right and to glorify Him is truly, truly a blessing and a gift from Above. Thank You, Lord!

As for my husband, I thank God for him. Over the years, we have both been through so much. Through all the ups and downs, the many times we were on the verge of quitting, and although he has seen me at my ugliest (and I do not mean this just physically), he has never given up on us. He has never let me go. He has stuck with me through thick and thin, and he is still here with me even on this difficult journey, supporting and loving me more. I honestly do not think any other guy would be able to do this. And we are blessed with three beautiful children.

Our children have brought us so much joy. I have learnt so much and have grown along with them. Little Kaitlyn came at just the right time (when a lot others thought it was the wrong time for me to be expecting another), and brought us more laughter and joy. She has taught us to be better parents and brought us closer as a family. 

Through my journey, I have witnessed and continue to witness God's amazing grace and His great love. He has sent and keeps sending so many beautiful people, earthly angels and saints into my life. I get a lot of help, support, prayers and love. I know there are many people around the world praying for me - many I have yet to meet but they genuinely and unceasingly pray and help and feel for me. I am eternally grateful. God provides. He always makes a way, even when there seems to be no way. 

God answers prayers. The time when I needed to do my BRCA gene test, I was trying to find the best and cheapest place to do it (It is not available in this country). Then I prayed for the cheapest and most convenient way, one where I need not fly out. That very afternoon, my oncologist called me up and asked me to call this man who called him out of the blue to tell him he offers this service to collect the blood and ship them out for BRCA and other gene tests. Praise the Lord! 

There are many people and things in my life I am thankful for. I have so much more to learn. I pray for more patience and love, for the grace to forgive and forget any past hurt that I still hold onto, and to fully surrender to God and His wills always. 
To anyone I have affected or offended, whether knowingly or unknowingly, I am truly sorry. Please forgive me. 
I pray for the grace to always offer up my every pain, suffering, complaint and trial for the salvation of souls and conversion of sinners everywhere throughout the world. To practise resignation in trials, to be meek and humble. 
I pray that the good Lord will bless you all abundantly, always.

I can do all things through Christ who strengthens me. - Philippians 4:13

All praise and honor and glory be unto God forever and ever!