Quarterly check-up: You'd never know

I was back at SDMC today; it was time for my quarterly check-up with Dr Kamal. Walking passed the Cancer Centre, I remembered the cancer treatments, and the first time I had walked into the centre. Let me share with you what happened. Back then, I only looked down the long hallway and could only imagine the torture that awaits me. This was a world I NEVER expected to enter. All I felt was fear for what lay ahead and the thought that God had punished the wrong person lingered in my mind.

Little did I know that what lay ahead was not as bad as I thought. In fact, the experience brought the unexpected reward of self-discovery. But I didn’t know it then. All I knew was that I had been operated for Adenoid Cystic Carcinoma and now was to undergo 33 sessions of radiation and 6 cycles of chemo. My mood showed in my appearance back then – no make-up, no interest in the clothes I had put on that morning, no smile on my face, nothing… nada!

One fine day, during the fourth week of radiotherapy (while being accompanied by my sister, Sara), a stunning, confident looking woman had walked into the building as I was waiting in the waiting area for my treatment. High-heels, suit, matching handbags, make-up; perfect.

“I’m here for my check-up,” I overheard her talking to the receptionist, Cynthia.

I turned to Sara. “You’d never know. Siapa sangka she had cancer,” I whispered. She had cancer and she looked beautiful. She had undergone radiation and now she was walking, talking, smiling and joking with Cynthia. She was a SURVIVOR! I was grateful to see her face and to hear her cheerful voice. It gave me a sense of hope and made me think that if she can do it, so can I! Then it was my turn to go inside for my treatment. I vowed to myself that I’m going to do for someone else what the beautiful lady has done for me.

That was back in December 2010. Today, seven months after the incident, like I mentioned earlier I was back for my quarterly check-up; accompanied by my beloved fiancé, Azmir.

So we reached SDMC at 8.30am and I was the second person to do the MRI (which took me almost 1 hour). After I’d received the results, I went to see Dr Kamal straight away and the result was positive! There was NO recurrent tumour or enhancement of the lymphadenopathy. Dr Kamal was pretty happy with the results, and I was happy too! Now there’s just one main challenge for me – to go through fasting month, the month of Ramadan! So Dr Kamal had gave me another ONE month MC to try to fast like normal (since this is going to be my first time in life fasting after having cancer). Also, he gave me Glandosane – synthetic saliva. It’s a saliva substitute for patients with dryness of the oral mucosa and throat and since I no longer have my right submandibular gland and sublingual gland to produce sufficient saliva for me, I really hope Glandosane will work its wonder.

So I went to see the receptionist at the Cancer Centre counter to collect my MRI scans and to get my MC.

“How are you doing, Aida?” the receptionist asked. “You look great,” she said.

I had dressed decently today – H&M pink pants, Forever 21 cardigan, tank top and scarf, and Nine West pumps. I had ironed my scarf, carefully applied my make-up and sprayed my favourite perfume. I was determined to look my best today – I like to call it a “post-cancer” attitude.

A lady wearing a bandanna was sitting with her husband to my right. Her face was pale and lifeless, and she looks afraid. I knew she must had been through or still going through cancer treatment. You could tell. She looked at me for a long time, observing me from head to toe and somehow I knew what she was thinking. I gave her a reassuring glance and smiled at her. Her face brightened and she returned it.

That was when I knew, I HAD DONE MY PART...

PS: Met Nick at the Imaging Department while waiting for my MRI Scan result. He was there for his X-ray. I never knew that my blog had inspired him to write his own blog and seek advise from the same oncologist in SDMC (he was later referred to Dr Foo, also an oncologist at SDMC). You'd never know...

PSS: Alhamdulillah, I am so grateful to God for giving me a chance to be healthy again and for all the blessings. My never ending prayer to Him has finally been answered. To my family and friends, Thank you for always encouraging me and never giving up on me. I love you all! Check out my MRI result below! :)

Wednesday Night Movie: My Sister’ Keeper

Watching this movie got me thinking about cancer. Cancer is something that seems to have an impact on almost everyone these days; it’s good that there are films like My Sister’ Keeper that help us deal with it. I cried throughout the movie, it’s a really sad story. Not just me, the whole family was crying too! I guess it really reminded us of my own battle with cancer – the vomiting, the hair loss, the weight-loss, the special Cisplatin ‘cocktail’, the pain the family had to go through. Kate Fitzgerald had APL. I had ACC. There can be 1001 abbreviations out there. But we should never let it bring us down. Watch the movie; it’s very empowering and a definite eye-opener to how short life actually is.

PS: My Sister’ Keeper reminded me of a girl from Banting, Yasmin, who shared the same ward as me while I was hospitalised at SDMC. She was 18, had AML (Acute Myeloid Leukemia) and was waiting for her sister (the donour) to complete SPM the following week for bone marrow transplant. I left the hospital earlier than her; I wonder what happened to her. To Yasmin, I hope things go well for you, wherever you are.

SCKLM 2011

Hi! I’m so busy these days that blogging has unfortunately moved down the ranks of my to-do list. But I miss it! I always have so many things to write, especially regarding my post-therapy experience but procrastinating always gets the better of me. Just a quick update about my life right now: I'm still on Prolonged Illness Leave given by the firm (TQ PwC!), I play netball almost every weekend now & also futsal, just finished my Financial Reporting Paper for ICAEW (I hope I pass!) and also preparing for my wedding in September.

Should I continue writing and not procrastinate, I want to tell all the cancer survivors out there, that there is life after cancer. You may have permanent scars on your body (as for me, I have a 12-inch scar from my chin stretched right underneath my right ear), you may suffer from side effects (my hearing and taste bud were impaired, my mouth is always dry due to non-production of the saliva) or you may even have emotional scars from going through so much. You may find that others (your family, friends, colleagues, etc) think of you differently and treat you in a different way. But it is not the end of the world. Life can be better, so long as we have faith in the Almighty and most importantly, faith in yourself.

To tell you the truth, I was feeling so depressed post-treatment as I expected my life to return back to normal. To the way it used to be before I was diagnosed with cancer. But having that kind of expectation only frustrates me and makes me feel bad about myself. Post-treatment, I couldn’t eat straightaway, I couldn’t run straightaway, I couldn’t be active straightaway. Like I said, I wanted life to be back to normal, so bad that I forgot the reality – I had suffered because of cancer. Then, I learnt to accept myself the way it is; imperfection and all. I set smaller goals to achieve, like instead of expecting to eat a Big Mac straightaway, I start small by eating porridge (cause all this while I’d been eating BLENDED porridge during treatment) then I moved to eating soft rice. The first few months after treatment was a time of change for me and I try to embrace it. It’s not so much of “getting back to normal life” like I anticipated, it’s more of finding out what’s “normal” for me NOW. My new “normal” includes making changes in the way I eat, the things I do, the way I talk. Life has new meaning and I look at things differently now. Cancer has changed me as a person.

I will definitely write about my experience, especially after I found out that my story inspire others and becomes a point of reference for new cancer patients. If I can do it, so can you! But for now, I will write about what I've been up to recently – running the Standard Chartered KL Marathon (10km run - Women Open on 26 June 2011)

When I was having chemo and radiotherapy, I quit doing almost everything! I was too tired, sick and in pain most of the times to even open my mouth to speak! One day, when I was feeling down while being hospitalized at SDMC (sometime in December 2010) for side effects of chemo - fatigue, nausea and (bloody!) ulcers in my mouth, Azmir, my boyfriend (now fiancé) asked me what seems like the most ridiculous question ever:

Pictures of me back in December 2010 (Warded at SDMC)

Our conversation:

Azmir : “Aida, my dear. Will you run with me? Let’s register ourselves in advance for the Standard Chartered KL Marathon in June 2011!”

Me: “What?? Are you crazy?? Can’t you see that I’m sick? Can’t you see that my neck is still stiff from the surgery and the radiotherapy?? I have cancer Azmir, things will never be the same again” (dramatic mode)

Azmir: “Have faith in yourself. I’m sure you’ll recover by June and we’ll run side-by-side. Worst case scenario, we’ll just collect the goodie bags and skip the marathon. Sounds like a plan?”

Me: “Yeah yeah, whatever. If you think I can run and be fit and healthy again by June, you’re just kidding yourself. Don’t give yourself false hope; you’ll be disappointed one day” (negative mode)

After completing treatment, I kind of forgot that Azmir registered us for the run but with his help and constant reminder, I started to train almost every evening with him (this first started in April 2011). At first, I can’t even walk! My neck hurts so bad that I always felt like giving up. But as time goes by, not only can I run but I even managed to complete the 10km run (completed the run in 1:21:10 and was number 409 out of 3910 for Women Open) and received a finisher medal! I am so proud of myself!

And Azmir ran by my side the whole time! He had the choice to run solo and complete the run earlier but no, he pushed me to my limit, pulling my hand when I was slacking, and encouraged me when I told myself I can’t. So Azmir, I wouldn’t have completed the race, or go through cancer for that matter, if it wasn’t for you. I love you.

My Last Radiotherapy Session!

January 8: Hurray, last day of RT! Today is the day that I've been waiting for since the first time I was diagnosed with cancer and was advised to undergo radiotherapy. Today is the day that I will be "zapped" for the very last time. Today is the day...

I am very sorry for not updating my blog for a very long time. The truth is, after I was admitted, I wasn't feeling very well. Every day is a new challenge for me. I was focusing too much on my pain. Even now, the ulcers are still painful. I just pray that everything will improve in future. When? Only God knows... Anyway, these are my pictures taken on the last day. If you'd notice, my neck is a bad case of sunburn. My ulcers? Don't mention it. It's just too painful to describe.

Front view - Last day RT

Back view - Last day RT

Right view - Last day RT

Left view - Last day RT

View from below - Last day RT

Ulcer: View from top - Last day RT

Ulcer: View from below - Last day RT

Ulcer: View from right - Last day RT

I went to my last RT session with Mom, Dad, Sara, Amir, Hafez and Azmir. It felt like a carnival! I was never accompanied by so many people. I celebrated by giving out cupcakes to the radiotherapist, Dr Kamal and the Cancer Centre' staff. The next checkup will be next Thursday so I need to rest and hopefully my ulcers will be better by then. I have lost 7kg from Week One. Seems like radiotherapy is a good slimming programme.

The yummy cupcakes that we gave away. But the month was supposed to be January instead of December :)

Before my RT session:

After my RT session:

Amir and Azmir goofing around in my mask.

Throughout my seven weeks of treatment, I never went to radiotherapy alone. My sister, Aida Maisarah was my constant companion (though she was working during her semester break, she tried to accompany me every day). Besides her, Mom would come on days when I have chemotherapy or doctor's appointment. And of course Azmir, who never failed to come back to KL every weekend (as he is working in Johor) and would accompany me whenever he's back (and if I have RT session). Meh Mustaffa, my best friend from high school also came along once during the first week of my RT and was given a tour of the RT room.

The RT sessions last only a few minutes or so. But there were always extra minutes in the waiting area to mingle around with the other cancer patients. I made many friends in the SDMC Cancer and Radiosurgery Centre (though I didn't really knew their names, sorry!). Some were in worse shape than I was. We encouraged and prayed for each other. There was no racial barrier, no religious divide, no class distinction among the patients; all of us were comrades-in arm, battling the same enemy - CANCER!

How do I feel? There is a sense of relief, yet restraint in my joy because with cancer, there are no guarantees. Throughout this journey, I believe God was with me all the time. He was such a wonderful Friend. Every day I pray that God will see me through this and that I would emerge stronger.

WEEK 2: Radiotherapy Session 8 - 12 & Chemotherapy Cycle 2

November 29: Week 2 (Session 8 – 12) progressed much as Week 1. Here’s how I look like after one week. This picture was taken at the beginning of Week 2, not too much difference from last week I must say. As Tomotherapy’ radiation is delivered slice-by-slice (tomo is actually Greek for ‘slice’), the radiotherapist told me that I should be anticipating a “bad-case of sunburn” at the radiated area (being my cheekbones down to my collarbones). Everything went smoothly throughout the five radiotherapy sessions so I was quite happy. I am eating well - though my Mom put me on a very strict, healthy diet, I admit I did asked Sara to buy me a McD burger (or two) :)

Guilty as charged!

Back view - Beginning of Week 2

Front view - Beginning of Week 2

RADIOTHERAPY WEEK 2 (SESSION 8 – 12)

Session 8 – 29 November 2010
Session 9 – 30 November 2010 with Chemotherapy
Session 10 – 1 December 2010 (Yikes, it's already December!)
Session 11 – 2 December 2010
Session 12 – 3 December 2010

TAKING SPECIAL CARE OF MYSELF DURING RADIOTHERAPY

Skin Care
According to the radiotherapist, I will experience dryness and redness of the skin in the radiated area. When will that happen? Let's just wait and see... I was advised to wash the treatment area with alcohol-free baby products. Therefore I had switched from using my favourite Body Shop’ Passion Fruit body range and L’oreal Hair Care to Johnson’s baby milk bath and Johnson’s baby soft & shiny shampoo. Oh I smell like a baby! (Wish that my skin is as soft as a baby too...)

Avoid very hot or very cold water on the radiated area. Don’t use hair dryer or rub the treatment area too strongly with a towel. Also, I was asked not to wear ANY makeup. Going sans makeup? Oh bollocks!

I was also asked to avoid exposing myself to the sun. Sounds easy but I am the type of girl who believes that an umbrella served as a defense against the rain rather than the sun! As for clothing, I need to avoid tight collars (no round neck Ts for me) and wear loose fitting clothes.

Dental Care
It is very important to care for your teeth during treatment as radiotherapy to the head and neck area increase the chances of mouth infections and tooth decay. One thing that I really regret: Not seeing a dentist prior to starting my treatment! Why? Because once the ulcer “attacks”, it will be too late to see a dentist when all you need at that time are loads and loads of painkiller to ease the pain, trust me.

I was asked to use a really soft toothbrush to prevent gum disease and jaw infections. Initially I’d used the dental care set (includes mouthwash and toothpaste) that was given to me by Ms Eng during my first visit (for RT planning) - OralSeven. But later, I’d switched to Biotene (upon recommendation from Dr Kamal). I personally prefer Biotene to OralSeven.

Vs.

CHEMOTHERAPY CYCLE 2

November 30: I was up by 6.30am, trying to calm myself. I was so nervous, though this is going to be my second chemo session.

My status from FB the night before chemo:
"Feeling a bit nervous for my Chemo Cycle 2 tomorrow. Ya Allah, please give me the strength to go through this ordeal. Amen. On a positive note: Chemo Cycle 1 and Radiotherapy Week 1 Session 1 - 7 (out of 33) = DONE!!!"

I was accompanied by Mom and Sara for my second chemotherapy session. Before we left, Ibu had packed drinks and spaghetti for lunch, but this is no picnic.

Once I'd arrived, like usual, a complete blood count (CBCs) was performed prior to the treatment and my weight was also taken.

P.S.: Today, I had chosen Bed No. 13 as it's Azmir' favourite number!

My CBC result on 30 Nov 2010 (and will always be recorded in My Personal Chemotherapy Diary) :

• Hemoglobin (HgB) – 12.0 (Previous week: 12.4 - Decrease)
• White blood cells – 5.38 (Previous week: 5.58 - Decrease)
  
• Platelets – 261 (Previous week: 233 - Increase)
• Weight – 52.1kg (Previous week: 53.6kg - Decrease)
• Result = PROCEED!

Sara bought me a sunflower during chemo today. Why a sunflower? In the game Plants Vs. Zombies (my official chemo game), the sunflowers are the one that produce sunshine and to get more points and energy, we have to collect all the sunshine produced.

As she saw me feeling a bit down and uncomfortable (because of the administration of the Cisplatin - it gives me a tingling feeling 'down there'), she bought the sunflower and told me that I should 'produce a lot of sunshine and have a lot of energy'. Very thoughtful, in a kooky kind of way. Thank you my dear.

And of course, the 'cocktail' which includes pre-medications that quell nausea magically and the bag of poison - CISPLATIN.

WHAT HAPPENED DURING THE WEEKEND

I'd developed a small mouth ulcer on Friday night. I treated it with Bonjela and it seemed to go away, only to come back that weekend in different places! Within a short period, I had such a bad attack of ulcers over the weekend. The ulcers seemed to be everywhere! I'd decided to wait until Monday to see Dr Kamal. It was so bloody painful! Check out the picture below. I'm very sorry if the picture (of the ulcers) is disgusting.

P.S.: Thank you Nadia Suhaimi for the short but sweet catching up session at Tutti-Frutti Bukit Jelutong (Well, at that point of time, I can still eat frozen yogurt. Haha) on 1 Dec 2010. And a big thanks to my PwC colleagues - Hafizah Hamzah, Diyana Rabain, Megat, Nizam, Hafizan, Faizal Farid, Dzulfiqri and Dzulfiqar who came during the week. It really made my week!