Tag Archives: support

The Fight Resumes, Peacefully

Apologies for the lack of post for quite a while. I was away for a week of low dose chemo, went home to readjust myself physically and mentally. The fight has resumed and I would like to put my experience and thoughts to words over here as usual.

It was really difficult to accept the truth because I’d placed so much hope and expectations on the bone marrow transplant. I felt depressed and scared at the thought of a bleak future. Am I too young to go? I still have many unfinished businesses? My mum would be heartbroken! All these thoughts gathered in my mind and crowded out the optimism I used to have.

Being a fighter, however reluctant I was, I knew the fight has to continue. This treatment could be done outpatient, but I had the option to do it inpatient as well. Since I’m covered with medical insurance, it would make economic sense to go inpatient and claim. This will also ensure the next 3 months of outpatient bills are taken care of by the insurance company.

Nurses, doctors and friends who learned about my condition didn’t know what to say. They could feel my level of optimism was going down. But deep in my heart, I knew they wished me well and hope things will turn for the best eventually. In the silence that came after I explained my condition, my words echoed in my ears and I managed to break a weak laugh and said “no worries, my fighting spirit is still high!”.

This low dose chemotherapy using Azacitidine (Aza) was administered sub-cutaneously, under the skin of my tummy. It was coupled with an anti-epileptic drug, Valproate, to enhance the efficiency of the chemo. The chemo costs $700+ per injection and I received 9 jabs in total. Thankfully for the medical insurance, I’m paying nothing. Valproate was given 5 tablets for 3 times a day and it made me groggy even the next two days after my discharge from the hospital.

The chemo made me vomitted a bit and rashes developed on the front trunk of my body. Doctors suspected the rashes could be either graft-versus-host-disease (GVHD) or drug allergy reaction. I was kept for another day so that the dermatologist could remove a small piece of my skin for biopsy. We were hopeful for GVHD so that there’s graft-versus-leukaemia to keep things in control. However, 4-working days later, the rashes subsided and it’s proven to be allergy reaction. :-/

During the stay, I am glad that Ewan loaned me books on Happiness and The Art of Meditation, both by Matthieu Ricard. The books touched on the Four Noble Truths which I have learned many years back in Manjusri Secondary School. I took on further reading on the Internet about the same topic with great interest. After my discharge, Ewan recommended that I listen to Ajahn Brahm’s talks on youtube. I got quite ‘addicted’ listening to the monk and this explains for my absence from TJFC. I was seeking wisdom and enlightenment.

Ever since I started meditating, affirming my sub-conscious mind, and watching Ajahn Brahm’s videos, I found peace and joy in many things that I do or happened to me. I think for once, I really understand what is living the moment. Every day has been a great experience thus far, and I think I’d moved out of the shadows that was over me two weeks back then.

At peace, at ease. :)

Hair for Hope 2012

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 for Children’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

See you there!

A Blessing In Disguise

Unfortunate events may fall upon you, but take a look again, it may be a blessing in disguise. As I excused myself from work for leukaemia treatment, I had the opportunity to spend time with and take care of my ailing dad. This was important to me, especially when I was hospitalized and away from home.

My dad is hardly mobile nowadays due to the unbearable pain whenever he moves. As such, he could not visit me at the hospital. A few days into my third cycle of chemotherapy, he was hospitalized for pain and breathlessness. I was so afraid of losing him. But he remained strong and battled with the illness that brought him immense sufferings.This is something I have to learn from him.

For the past three weeks, I have helped to relief my mum, the main caregiver. By sharing the house chores and listening to her, I was able to reduce stress and the amount of work my mum has to shoulder. She also gets a chance to take a breather while I looked after dad.

Dad stays in bed most of the time. I would bring the newspaper to him, remind him to take medications, and give him a good massage wherever he complains of pain. As a patient myself, I knew how comforting it is to have someone with you when you are weak. These are simple things that anyone can do, but nowadays, how many of us can take time off work to take care of our parents (or children) ourselves?

Every night, I pray that his cancer cells would disappear miraculously so that he will not suffer from any pain and our family can spend more happy times together. Will the universe conspire in helping me to achieve this?

Whatever happens, I am glad that I had the time to do what is important to me. And I am also blessed with a girlfriend who’s understanding and listens to me all the time. I could only keep counting my blessings.

What are your blessings?

Life Changing 34 Days

34 days of confinement and I am finally discharged from SGH! This is quite an experience for me, a life changing one.

I remember the scene that mum teared when I told her it’s leukaemia. Devastated. It’s so cruel that she has just accepted her husband’s stage 3 lung cancer, and now, she has to accept her youngest son’s new diagnosis. The sight and thought of her crying breaks my heart. I knew to make her smile again, I have to be strong and positive – and it works! This is the power of positive influence!

Although the statistics for AML patients to going into complete remission look promising, I felt a need to have my girlfriend reconsider about our relationship. Qipei knew about the possible outcomes, but she believed in me. We want to go through this together and I am certain it will further strengthen our relationship.

The first cycle of chemotherapy (a.k.a. induction chemotherapy) aims to bring the disease to remission. Cytarabine and Idarubicin were administered, both intravenously, for 22 hours over 7 days and 3 boluses over 3 days, respectively. Of cos, anti-nausea and anti-vomiting (antiemetics) drug was given prior to chemo to prevent any nauseous feeling or vomiting. This cycle was rather gentle on me – only experienced bloated tummy and dry skin. The gassy stomach was relieved towards Day 7 and there was moisturizer for dry skin.

My platelet counts dropped after chemo and brushing teeth was a no no! There was an occasion after rinsing my mouth, in front of the mirror, I noticed some bits of cookies stuck in between my teeth. My itchy finger removed it and fresh blood flowed out from the adjacent gum. In the subsequent two days, my gum bled at various locations and they just refused to clot until what felt like a blood gelatin formed. I tried to remove these gelatin with my tongue and my poor gum begun bleeding again. The pseudo-jelly salty-iron tasting blood in my mouth was really yucky! I learned my lesson to go on soft diet and not disturb any clots when my platelet counts are low.

I was prepared for hair loss and I thought it really does not matter to me. First, it was finding strands of hair on my pillow in the morning. Next was seeing loose strands of hair on my palms after shampooing. The ultimate was when I sat on my bed and shook my head vigorously, strands of hair just fell off. I laughed. Then I botak-ed myself with mum’s help. It was cooling and not so demoralizing anymore.

A few days into chemo, I began to inform a few close friends. They came with well wishes, food, entertainments and good companionships. It was really heartening and morale-boosting for me – I wasn’t fighting leukaemia alone! A particular support that I must mention is from LeRoy and his family. Aunty Susan, LeRoy’s mum, blessed me with some wellness products to complement with my treatment. She also cooked a variety of healthy vegetarian dinners and delivered them to me almost every evening. And of cos, there were lovely messages from friends who could not make it to visit me. I felt loved and I saw genuine care and kindness from everyone. All these – priceless!

My life has changed. I am now living a life with gratitude, love, hope, and zest!