I was quietly celebrating my life after 1 year of diagnosis. Every thing looked good, just the way we wanted it to be after the transplant.
But just two days before Day +100, we found 0.6 x 10^9/L of blast in my blood.
Where did they come from?
The high dose chemotherapy should have wiped out all bad blood in me. In April, I was totally cleared of leukaemic cells. My blood cells and bone marrow then were all matured from the stem cells my brother donated to me.
What went wrong?
I can’t believe this is happening to me, again. I dread the thought of chemotherapy and bone marrow transplant. I dislike hospital stays.
My hope and optimism are consumed by this devil, every time it returns.
Last year I was attending a Workplace Safety Workshop on my birthday. The very next day, I was down with high fever because of the abscess that was swelling like the size of a Ricola candy (pardon me if you are sucking on one now) on my left axilla. What happened next was one full year of disaster that changed my life.
27 might have been a struggle, but I made it to 28!!! I’m a fighter, a good one I conclude! Hahaha
Traditionally, in my family, birthdays are celebrated with symbolic hard boiled eggs. But this year, I was treated to a simple, nice and warm pot of mee sua with kang kong, slices of pork collar and hard boiled egg for lunch. It wasn’t intentional, but my mum just decided to cook mee sua for lunch. In anycase, it’s very much appreciated!
Spent the morning putting up the Hair for Hope 2012 donation link on Facebook, hoping that I can reach out to more friends, spreading awareness of children cancer and help to raise funds for Children’s Cancer Foundation. My simple birthday wish is to raise funds for CCF and I think so far, I’ve done quite a good job with the support of my circle. Celebrated my birthday with CCF by making a gift of $280. Think from this year onwards, it will become a tradition of mine to give on my birthday!
The afternoon with Qipee was simple, just the way I wanted it to be and what I would call quality time. From Tampines, we took bus 29 to Netheravon Road to check out The Coastal Settlement and have our dinner.
It didn’t take me long to fall in love with this place. I like the vintage decorations and settling on the sofa made me felt like home. Tables were adequately spaced apart giving personal space to diners. As we were there early, I felt I had the whole place to ourselves.
Food were served pretty fast and the portion looks good for sharing between 3-4 friends.
Who can resist these truffle fries?
Truffle Mushroom Fetuccine
Happy girlfriend with happy food and happy birthday boyfriend (behind the camera)
I’ve just joined the group of men who clank beer mugs and toast to a future that no longer needs me to wear green uniforms, boots and carry a rifle. Neither am I required to pass IPPT, attend ICT, nor apply for exit permit when I travel out of Singapore. It’s probably my first failure in life – PES F (failed medical test) – that I felt great about. Just like most NSFs, I’d also hoped for PES downgrade or exemption from NS duties during my NS stint. But seriously, in my case, I think it’s an irony to celebrate this. Whatever it is, I’m feeling light and free because it’s one responsibility off my shoulder.
Don’t be mistaken, I do support military trainings for every Singapore boys. Though it was a short NS stint, I’m still proud to have served my country for ~2.5years of full-time NS and one low-key ICT. In NS, I’d learned many skills and picked up some good habits. It’d changed my perspectives, character and made me a more matured and better person. Going through the bone marrow transplant was tough, but my NS experience has prepared me well to manage the tough times.
My BMT Leopard Company PC Lim told us that NS is good because IPPT ensures that we keep fit and healthy. IPPT pushes us busy people to exercise. Not forgetting the money incentives that can help to offset phone bills or a sumptous buffet. Now, without a push factor, I’ve become so lazy and giving in to mum’s suggestion that I should eat more and rest more. I know if this continues, I may be at risk for obesity, high cholesterol or diabetes. Time to make some exercise plans and execute it own time own target!
The army personal equipment are nicely packed into the black duffel bag. I think I can give away some items if anyone wants them.
Today our cute little niece came over to our house to play with us (or play us?). At the age of about two, Ke Ning already aced in thermodynamic’s entropy. Every time she comes over, it’s almost a ritual to pour out her toys, lay out all the things in the house that her tiny hands can reach. The adults would be chasing after her to put things away to prevent trip and fall, or to make sure that she doesn’t climb too high and fall. And surprisingly, I always got exhausted even before she feels sleepy and come asking for her tutu (pacifier). As much as we complain about her some times and call her a naughty girl, we still love her very much.
Brother is out at work and when he returns, it’ll almost be time for niece to go home. Taking that into consideration, mum called sister and suggested a later pick up time for Ke Ning so that brother can have more time to play with her. My brother usually helps with washing the dishes after dinner these days. But today, I decided my gift would be to take over the washing so that he could have more time to play with niece. They both had a great time together, we could tell from Ke Ning’s laughter.
Mum’s dinner was late because she had to feed niece first. I could tell she’s really tired after a whole day of work and taking care of Ning. Again, I took over the mess in the sink so that mum could rest and watch them play. It didn’t feel like a chore to do things for your loved ones if you do it willingly.
Gratitude I’m thankful that Ke Ning didn’t fall sick, as we thought she might a few days ago. I truly appreciate my friends for their care and concern when they found out about my condition.
I’m very grateful for the donations and encouragements received from my RSPHI friends.
I haven’t been contributing to home allowance for the past four months even though I’m still receiving half pay from my company. Mum insisted that I keep those money for future medical appointments and treatments.
It’s Labour Day but mum doesn’t really get to enjoy such holidays. She’s still the home maker she is, making sure the house is clean and proper and meals are served. I’m seldom activated to help nor do I have much initiatives these days… bumming around has simply made me very lazy. I must admit that a lot of times I took what she’s done for this family for granted.
Today, I offered to mop the floor as a gift to my mum. It’s not the first time I help, but usually when I do, there’s some form of obligations so that I won’t be labelled as “freeloader”. Felt really good to receive a simple word of thanks for the job well done. Guess she was quite tired and my help came timely.
I’m very grateful that my company is willing to keep my position, and continues to pay me even when I’m on such a long medical leave.
I’m blessed to have an understanding and caring mother who took part in my recovery journey, ensuring I have a clean environment and delicious meal!
I’m thankful that my immunity, despite suppressed, has remained strong and kept me out of infection for the past one month. Plus, I haven’t need any blood or platelets transfusion so far.
I’m a sucker for self-help books and I found 29 Gifts very inspirational and close to my heart. Found this book by chance two weeks ago, and it got me curious about how Cami coped with her illness, overcome the odds and initiated a goodwill movement over the Internet.
Cami was diagnosed with multiple sclerosis (MS) shortly after one month of her marriage. MS is an incurable autoimmune disease in which patients’ immune system attacks myelin, a protective layer for nerve fibers in the brain and spinal cord, and causes disruption to the message transmitted along the nerve. MS upsets Cami’s life badly and she became very negative about it, constantly asking the question, “Why me?”. That’s a very common thought of newly diagnosed cancer patients and their families too!
One day, Cami met an African medicine woman Mbali who prescribed “Giving 29 gifts in 29 days” to her. Because “By giving, you are focusing on what you have to offer others, inviting more abundance into your life.”, Mbali told her. In the month-long project, Cami realized that her focus on giving had unknowingly helped her to “let go” of some sufferings and problems. Along also came many helps and pleasant surprises which she learned to accept graciously with gratitude. Cami’s life had changed for the better and eventually she had founded 29Gifts.org hoping to recruit more givers in this world.
In my family, we were always taught not to trouble others and to politely reject gifts in kind. If we were to receive any gifts, it’s only right that we return a gift of similar value. A bit of traditional Chinese culture, like the exchange of mandarin oranges during Chinese New Year. Perhaps it’s because we don’t expect to receive so it wasn’t a habit to give either. Last year when I was having my first cycle of chemotherapy treatment, LeRoy’s mother insisted on bringing healthy home-cooked vegetarian dinner to me daily. After politely dissuading her a few times, Aunty Susan told me, “I don’t have to give, but I want to.”. It wasn’t the tasty meals but her time and and sincerity that touched me deeply, as I later later found out that her late father was hospitalized at Tan Tock Seng Hospital. She could have spent the time with her father, but she made time for me just to make sure I have good nutrition to fight leukaemia. My mum, then, was unable to visit me as often as she would love to because she had to take care of my late father who was getting less mobile. Hence, we were very grateful for Aunty Susan and her family for their unconditional generosity and kindness.
Cami’s memoir reminded me of the goodwills I’ve received. It has also inspired me to start giving unconditionally and consciously, and thus, the very first project to raise funds for Hair for Hope 2012! (Please support me!!!) Since May is my birthday month, I decided to embark on this journey of 29 days of giving. I will try to update my daily givings here.
I would recommend 29 Gifts to anyone caught in a tough situation and needed a little inspiration. Let us all be reminded that there are miracles, good, humanity and abundance in this world. Experience a change of perspective in your life and pass on this goodness to others! Thank you Cami for sharing!
P.S. If you enjoy giving, you may like Katie Sokoler’s (owner of blog Color Me Katie) Love Note project and the recent Easter Egg Hunt project – leaving pleasant surprises around for people to find. That’s how fun giving can be!
Over the past 11 months of cancer fighting, I’m overwhelmed with gratitude for the help and support given to me. In the process of graciously receiving from others, I’ve learned the beauty of unconditional giving. With the latest news of my health gradually returning, it dawned on me that perhaps it’s time for me to be on the giving side.
Recently, I saw on Facebook that Hair for Hope 2012 (HFH) is opened for registration. HFH is turning a decade old this year and it has a growing number of supporters over the years. I remembered last July, after my diagnosis, Ewan, LeRoy and my brother supported HFH as a walk-in shavee. Their shaven-head raised curiosities among those they’d met, and with further elaboration, they’d helped spread awareness on children cancer. It goes to show that the initiative is meaningful and it is very successful at raising awareness for its cause. Besides promoting awareness of childhood cancer, the act of shaving bald serves to tell children with cancer and their families that they are not fighting alone, and that its alright to be bald. The monies raised will help to fund the programmes and services that the Foundation provides, for example, counselling, caregivers’ support, therapeutic play, financial assistance, palliative & bereavement support and etc. I believe the event will most likely see volunteers and donors stepping forward to offer regular services and donations, thereby creating a supportive community for the beneficiaries.
According to the statistics on HFH website, the most common age group of newly diagnosed children in 2010 is between age 0 to 5, with leukaemia as the most common type of childhood cancer. I could imagine how the parents would feel upon receiving the “life changing package” that slowly unravels along with their children’s diagnosis. Shock & disbelief, emotional, worries about treatment and prognosis, work disruption, financial stress, caregiving stress and etc which all sums up to two words, life changing. The young patients will never understand why are they different from their peers – bald and always away from school due to regular hospitalizations – and why do they have to tolerate the side effects from the harsh treatments.
As an adult leukaemia patient, I’ve received a similar “package” together with the diagnosis as well. Chemotherapy, in my case, was done inpatient and each hospital stay averages about four weeks. The poor immunity that arises after chemotherapy, may result in infections that can be fatal and thus I had to be isolated in single room. Loss of hair occured in patches, and unlike a clean shave, it’s hardly linked to style or fashion. My hospitalization bills have added up to over S$80,000, and that’s excluding the clinical tests and appointments after discharge. Too many to mention.
However, I’m very grateful for the encouragements and support from my family and friends, the excellent health care standard and services provided by the SGH Haematology team, the counsellings and financial assistance provided by the social workers, the understanding and support from my company and colleagues, and the list continues. With their help, I was able to focus on treatment & recovery and change this “package” to greater hopes and a better quality of life. I believe that’s what the Children’s Cancer Foundation is capable of doing in helping the children with cancer and their families.
I’ve been hanging on the thought of becoming a shavee for HFH 2012. As a registered shavee, I can raise funds forChildren’s Cancer Foundation by getting people to pledge their donations in support of my cause. For the past one week, I couldn’t decide on the amount I want to (or can) raise. I was afraid of not meeting my target and I didn’t want my family and friends to feel obliged to give. But today, I found a compelling reason to make a decision and register for HFH 2012. April 17, coincidentally, is my late father’s birthday. We’ve lost him to lung cancer last December. He was a strong fighter and he’d taught us that regardless of the results, always give our best and never give up. With this in mind, and on this special day, I decided to challenge myself to raise S$10,000.00 for CCF by spreading cancer awareness to my contacts and, hopefully, more. Papa, this is for you!
For the kindess I’ve received, I’d like to take this chance to pay it forward. Please support Children’s Cancer Foundation and my cause by making a donation here. Alternatively, you can join me for a shave and help raise funds for CCF by registering today. Lastly, please help to spread this message on children cancer to people you know and inspire them to get involved.
Hair for Hope 2012 will be held on 28 – 29 July 2012 at VivoCity Central Court
Clinic appointment ended with a little joyous celebration – FISH test is negative! I.e. no leukaemic cells found and my bone marrow has been replaced with a new and strong set of cells matured from my brother’s haematopoietic stem cells! The bone marrow transplant treatment is a success!
The next challenge would be to prevent infection, manage graft versus host disease, and to safely fight through the next five years (and more) without relapse. I am hopeful, once again, for the future. Heartfelt gratitude to the Universe which conspires to help me achieve what I want in life.