Monday, July 30, 2012

Post-Treatment Check-Up #1

Last Friday, I had my first post-treatment check-up. Alhamdulillah, my throat and mouth are better now. It no longer hurt when I swallow or cough so I've stopped taking morphine and finished the antibiotic. The condition of my internal throat can't be seen so it's not really known. But Dr Azrif said, it'll take up to 3 months before the inflammation subsides. So I still need to watch my diet and continue my oral care. 

I started taking solid food over the weekend. But slowly, starting with smooth and wet food that are chewed sehingga lumat to avoid friction/irritation in my throat. Taste bud, pretty much ilek but I'm looking forward to eat more food so I can pump up the energy. Definitely NO spicy food for up to 6 months. This means no rendang and kuah kacang for me this raya, boohoo! Oh well, anything to get better *pujuk diri sendiri*.

My energy level is still low but picking up slowly. I usually wake up with almost nil energy. I need to drink Ensure by 8 a.m. and that will last about an hour. Then, 2 scrambled eggs that can keep me standing up to 2 hours before I have my veggie (sometimes with tofu) porridge. Sometimes, before the porridge I have taufufa. In the afternoon, another round of Ensure and taufufa or boiled chick peas as my protein source. Basically, I need to refuel every 2 hours but I usually take about an hour to finish every meal. What took me so long? I need more time to let the food (even water) settled since I now have acid reflux/heart burn, another treatment's side effect. I also target 8-10 glasses of water/fluid a day and don't go to bed until I reach my target. I was never this disciplined. 

Dr Azrif was happy with my skin condition, the peeling should be done in a week and I'll be left with patches of new skin aka scars! I hope Bio-oil will do the work. I applied it even before the skin started to burn. Alhamdulillah, the burn is not severe, only some parts of my neck and the collar bone. But it is also possible that it isn't too bad because my Radiotherapy dosage is not that high. Daily dosage was 200 cGy; totaling to 70 Gy near the growth (more on the right side where the growth is), 60 Gy on my neck and 50 Gy for my shoulder area.

Here's a photo of my current burn condition. It's been 2 months that I only wash my face, neck and shoulder with just water! No soap or chemical except Bio-Oil after every wash. Hopefully no one gets gross out. :) Well, I can't wait to have a facial and get them scrubbed too! Alhamdulillah, my facial skin is not really affected except that it has become tanned and more dry.  

I was supposed to have a weekly check-up but after last Friday, Dr Azrif felt it isn't necessary anymore since I'm already on the path to recovery. I believe my illness, pain, challenges, sorrow, strength, calmness, recovery, hopefully good health and many more are from Allah. So, Alhamdulillah.

My next check-up is in a month, together with Dr Kuljit. My nostril will be scoped to determine if the growth has vanished! Well I sure hope so, Insyaallah.

Until then; eat, drink, sleep, pray and recuperate. I've started writing about the 7 weeks but if I don't have the chance to publish or update soon, Selamat Hari Raya! :)


Tuesday, July 24, 2012

Thank You

After my announcement last Friday, I've been receiving overwhelming response and support from friends and family. Some came to visit too. Most of them believe that I'm strong and will continue this fight. Insyaallah and thank you very much for your support as well as prayers :).

The 7 weeks treatment was tough because I needed to stay mentally strong and positive even though my body was getting weaker by the weeks. I was also anxious about the side effects and when it did appear, I had to get used to the changes and accept it. I will share the week by week experience soon.

Alhamdulillah, it feels lighter now that the treatment is over. No more anxiety and I look forward to get better even though it's still a long way to go. 2-4 weeks before I can take solids and regain my energy. Not too sure though about the burnt skin and hair regrowth. But my taste bud can take up to 6 months. In addition, I need to look out for any after effects, will find out more about this! 

My condition is pretty much the same as last week. I'm still on soft bland diet and morphine. My sinus has dried up a little so my nose is no longer blocked and I don't cough as much thus less stress on the sore throat. But my right ear is still blocked from the sinus, so people please speak up a little ye :). The burnt skin on my neck has started to peel (boo!), I guess it's inevitable. I've started taking antibiotics to prevent the sore throat from getting infected. I really hope I'll get better to enjoy Ramadhan and Aidilfitri (the food especially) :).

Friday, July 20, 2012

How are you?

I get that sometimes from family and friends who knows my condition. My reply is always "OK" or "Not too bad". As long as I'm alive, I guess I am! But in actual fact, it's tough! :( Somedays are OK, somedays aren't. The last 7 weeks felt sooooooooo long and mostly depressing. Yep, I'm on my 7th week, the final week of my treatment!

This afternoon is my final Radiotheraphy session, Insyaallah. I completed my Chemotheraphy 2 weeks ago, hubs and I decided to go for it but only for 5 sessions. It has been a very tough journey for me and I believe my family too who watched me deteriorates. 

Last night, for the first time in this 7 weeks, I cried so hard and my husband was with me. The tears just couldn't stop pouring. Throughout the last 7 weeks; I did cry in the shower, during my prayers and sometimes when I'm alone but never like last night. I've been holding it up. Probably because I knew I had to stay strong and positive. I believe, positivity is the foremost medication for cancer patients but it ain't easy to attain. There are days that you are OK and there are days that you are NOT. Who else to pick yourself up but YOURSELF. 

I'm blessed with tremendous support and love from my family and friends. Thank you and I love you all. I learned to let go, reach out, let myself to be helped and cared for. It's actually ok to be weak. I'm also blessed that during this difficult time, Allah brought upon me some clarifications on what really matters. Cliche much? Yep! :) But, Allah is great and He listens, you got to believe that. Believe being the key word. :)

So I'm still alive and hopefully for long, Insyaallah. After today's final treatment, I'll need to recuperate. My sore throat is pretty bad but yet to get infected or mouth ulcers, hopefully never. For the past 2.5 weeks, I've been on a quite limited soft and bland diet so my energy level is pretty low. As of today, I only lost about 5 kilos, back to my ideal weight 55 kg! :p Usually NPC patients lost more than 10% or up to 10 kilos. My skin hasn't burnt too bad, no peeling just yet, hopefully never too. I'm pretty bald at the back, agaks kelakar but cool too. :) I need to get my body back to normal before my PET CT Scan in 12 weeks. Then, we will know if I'm cancer free or not. Appreciate your prayers! :)

Apologies to some family and friends for not informing earlier or personally about my condition. Please understand that I needed time to accept my illness and the changes to my body. The last 7 weeks was tough, but I made it! Alhamdulillah.

My next posts will be on how I went through the 7 weeks treatments and how I managed the side effects including the emotional bit. ;) Hopefully it'll help any NPC patients out there who may be as anxious, scared and at the verge of giving up as I was. As for the rest of you; stay healthy by stop smoking, eat more whole grain, more veggies and fruits, less red meat, don't get stress up and exercise. Do regular health check too. Reminders for me too! :)

Selamat Menyambut Ramadhan!

Thursday, July 19, 2012

So, how do I get cured?

Since it was impossible to remove my growth via surgery, I would have to go through 35 Radiotherapy sessions over 7 weeks, 5 sessions a week (5 days a week). Radiotherapy is a localised treatment to remove the cancer cells by targeting intense x-ray beam at the growth and possible affected areas. Since I am a borderline Stage II, Dr Azrif also recommended a low dosage Chemotherapy at a minimum 5 sessions (maximum 7) over the 7 weeks (once a week) as a precaution to ensure remaining cancer cells in the body (if there are any) are killed. Hubs and me knew that Chemo does not only kill the cancer cells but also the good cells thus it would be harsh and deteriorating to my body. So we decided on Chemo later.

Dr Azrif also explained the temporary side effects of the treatments. Radiotherapy; hair loss at targeted area (above the back of my neck), burnt skin (at neck and shoulder), loss of taste, sore throat and mouth ulcers. Since my Chemo would be at a low dosage, I would not lose hair from it but I would get the usual nausea and fatigue. But he didn't actually say much, probably just like Dr Kuljit, he didn't want me to get too anxious and to worry only when it's time.

I found out later from other NPC patients I met and via online support group that the burn can get so bad until the skin peels which I believe can be excruciating. The sore throat and ulcers can get really bad till you can't swallow or even speak. Can't swallow means you can't eat thus you will lose weight. Rapid weight lost may halt the treatment and to avoid that, the Oncologist may suggests feeding through tube via your nose. Urgh! how uncomfortable is that, right? 

Everything looked so bleak after knowing the scary truth. I worried that my kid would be affected by the changes, how can you not talk to a chatty 7 year old? :( Knowing that things would get really bad, I reached out to my family because I knew I will tremendously need their support physically and emotionally. 

Initially hubs and I decided to keep the news from our family because we didn't want to worry them just yet, just like my doctors. :) But in actual fact, their worry is their love and doa. I was expected to get weak by the days but should still feed myself to sustain thus someone should be around to cook and care for me. Plus, I wouldn't be fit to look after my hubs and kid. So I moved back to my parents'.   

I was lucky to meet a couple of NPC survivors who shared their experience. I prefer to take in from them who has gone through the difficult journey. I also looked up online and found Singapore's NPC Online Support Group that has been very helpful.

But still, treatments and its side effects (also later the after effects) react differently on individual's body as well as mind and spirit. Thus, this blog is created to share my account as a NPC patient and hopefully survivor, Insyaallah.

Wednesday, July 18, 2012

Am I Going to Die?

I woke up the next morning with very puffy eyes from crying. 

We were scheduled to meet the Oncologist, Dr Azriff at 9.30 a.m. I didn't know what to expect from the meeting but I prayed that I would be strong to face it. I also prayed hard that Allah will give me a chance to live longer with my loved ones and for me to be a better person. Allah answered my prayers because the meeting with Dr Azrif clarified my worries. I was actually pleased to meet him despite that he officially broke the news that I have cancer.

Based on my preliminary Biopsy result, Dr Azrif was quite certain that I have Nasopharyngeal Carcinoma (NPC) and not Lymphoma. It could be at an early stage (I or II) because NPC is usually detected at a later stage, when patients come for diagnosis with a lump on their neck due to the enlargement of lymph node. I didn't have any visible enlarged lymph nodes but only the 3 cm growth found at the back of my nose. Plus, I didn't have double vision that may suggests the cancer cells have spread to my brain. Dr Azrif said, the survival rate for early stage NPC is quite high, 85-95% for Stage I and 70-80% for Stage II. I was glad hearing it and thought I'm not going to die! Not so soon, Insyallah.

Nonetheless, I needed to go through further tests to confirm. So the week after, I did a Head and Neck MRI to detect any other possible growths and enlarged lymph nodes. I also did PET CT Scan to detect any other cancer cells in my body. It was my first time for both tests. I'm usually practical and relaxed at getting tests done but I felt a little claustrophobic during MRI and it felt so long, even though it was just about 30 minutes or probably less. I had to be IV-ed some radioactive fluid for PET CT Scan thus I had to minimise my contact with children for the day. It broke my heart when I couldn't hug my 7 year old and kiss her good night :(. It was an emotional week for me, even though Dr Azrif was pretty sure that it could be an early stage cancer but you never know right? Nonetheless, I occupied myself with daily routine as a housewife, it was also my kid's exam week and packing since we were scheduled to leave for Umrah that Friday.

Dr Azrif met us again on Thursday to review the MRI and PET CT Scan results. Before the meeting, I prayed that there won't be more alarming news to swallow. And again, Allah answered my prayers, Alhamdulillah. Dr Azrif confirmed that I have borderline Stage II NPC. They didn't detect any other cancer cells in my body and borderline Stage II, because my lymph node near the growth was enlarged by 0.01cm 0.5cm thus it could be affected.

So, I would have about 70-80% 85-95% chance of living, Alhamdulillah. I believed I would live and live long I will, Insyaallah. 

Tuesday, July 17, 2012

How did you find out?

I have a bad sinusitis for the past 5-7 years and there were a couple of occasions in the last 9 months, when I sneezed, I found traces of blood in my mucus. So somewhere in April, I got it checked-up with Dr Kuljit Singh, an ENT Specialist at Prince Court Medical Centre, KL. 

During my first visit, he scoped my nostrils that were pretty tender in the inside and confirmed that my sinusitis was chronic. He ordered an Allergy Test and a Head CT Scan. Dr Kuljit is very relaxed, he would say, "Don't worry, if I'm not worried, you shouldn't be :)". Yes, with his big smile and bow tie! But I believe, he is also very experienced or he would not order the CT Scan on my first visit from where we later found out that I have an extra tissue/growth at the back of my nose. But still then, I wasn't worried because Dr Kuljit said, it could be some extra tissues that I had since small which caused the obstruction in my nose thus my chronic sinusitis. 

As I said, he's an experienced doctor and I believe he took precaution when he decided to do a Biopsy on the tissue/growth whilst clearing up my sinus. So in early May, for the first time, I went under GA for the procedure. After the procedure, again Dr Kuljit said "Don't worry because it didn't look too nasty :)". So I didn't worry, in the next two weeks before the Biopsy result was out. Well actually, there was one morning that I went melancholy thinking, what if it is something terminal? But then again, it was probably my PMS too :P. 

Anyways, two weeks passed and it was time to see Dr Kuljit. Hubs accompanied me. Being experienced and good thus makes Dr Kuljit a sought after as well as a busy doctor. What slightly disappoint hubs and me was, he didn't review my biopsy result prior to meeting us. So we entered his room, he greeted us with his big smile, recalled who we were while retrieving my Biopsy result from his computer. While the result was loading, he turned the screen to let us view it. The screen loaded, he read through it and so did we then his facial expression changed, no more smile. He was caught off-guard. We weren't, even though we were familiar but somehow didn't quite register "malignant" and "carcinoma" from the screen. Probably because Dr Kuljit said, the result had yet to conclude since they were doing further tests to rule it out as Lymphoma (another type of cancer). Basically, that preliminary result said, I have cancer but Dr Kuljit didn't utter it and managed to not worry us until it was time, yet again :). 

He told us that he will personally get the result concluded and call us in the afternoon. So off we went to run some errands and have our lunch. After lunch, I received a call from Dr Kuljit's nurse, my heart stopped when I saw Prince Court's number on my BB screen. As I talked to Nurse Munira, I couldn't feel my hand. She told me, Dr Kuljit wanted to see me again the next morning for another Biopsy and for me to meet the Oncologist, Dr Azrif. I obviously knew the term "Oncologist"! So, that was how I found out I have cancer. Again, Dr Kuljit disappoint us in breaking the bad news. He's a good doctor nonetheless and thanks to him I found out about my cancer at an early stage. Alhamdulillah.

Since I froze during the phone call, I didn't asked why I needed to do another Biopsy and meet the Oncologist. Well, what is there to ask? But hubs wasn't satisfied and he managed to talk to Dr Kuljit later that afternoon to reconfirm the bitter truth. The rest of the day, death was the only thing in my mind and I wasn't ready to leave my loved ones :(.