It has been too long, so this will be a long one!

Yep, it has been too long since I last update. I don't know if anyone follows and look forward to my updates but I believe I must because I sort of made a commitment to myself that I will when I first started this blog.

Coincidently, exactly 7 months ago I found out that I had cancer. And about 2 months ago, Dr Azrif confirmed that my PET CT Scan is clear and I'm cancer free. Alhamdulillah. It was indeed the best birthday gift I could ever wish for. I was never more thankful for another year of life with my loved ones. Just last week, I met Dr Azrif again for a follow-up check-up which I believe to see my progress from two months back.

I gained another 2 kilos! Well that explains why I'm no longer fatigued and I don't get hungry that often anymore. Time to watch my diet, don't think I should gain more. 

My mouth is still dry but probably slightly better or I may have gotten used to it. I occasionally choke and cough when I take dry food like toast thus I must have water in standby. Talking a lot also dries up my mouth. Sometimes my jaw gets tight too in between meals or when I haven't talk for a while. Dr Azrif said it'll get better though I don't think it will be 100% like it used to be before the treatment. Taste bud is not quite there but not that bad. I can enjoy my food better but I still don't trust my taste. What is just nice for me may be salty/sweet/sour/tasteless for others. No biggie!

My nerves are still affected. Although my fingers and skin don't get numbed like they used to when it's cold. But it can get a bit tight when I need to turn my head to the left, right, up and down. It also tingles down to my inner thighs when I turned it down. Dr Azrif said it's a normal after effect of RT and should go off in 6 months or so. I have gotten used to it too. To loosen up my neck, I'd turn and push my head (the furthest I can) to the left, right, up and down for about 7 seconds each in 3 rounds.

What bugs me is my hearing! My ears are still blocked even after I did a Bilateral Myringotomy about a month ago. The procedure pokes a micro hole through each eardrum to release the blocked fluid from my middle ears. But my excitement of hearing back the sounds of the rain and the traffic from in front of my home (yep, i miss  it) was short lived! In less than a week, the holes closed back naturally and my hearing seems like I'm wearing an ear muff, a very thick one I suppose. My voice sounds inward and loud enough for me but not to them I talk to. But I learned to handle that by speaking louder and clearer. Beside that and the constant ringing in my ears, I can clearly hear my breathing, heartbeat, as well as creaking of my joints and bones - music of my body! :)

But it does get depressing at times when watching shows/movies on tv as I am particular at hearing every word. Since we don't have surrond av system at home, the volume is put up from 65-70 to 85-90 or I'll turn on the subtitle :). It gets more depressing when having conversations. It's not a problem with someone with good voice projection, loud and clear! But it can get a little stressful with a mumbler, a very soft spoken person, people who rush their words and them who gradually get softer/whispery because they're getting lazy or gossipy. Haha yep, i've experienced enough to identify, analyse and categorise!

Some family members and close friends are aware of my hearing limitation. Some adapt and improvise whilst some shout and get all facial expressive which can be awkward for me :P. But thank you for bearing with me :). Mostly, I'll try and manage it myself. I'll position myself where my left ear (it isn't as bad as the right ear) is facing the speaker and I'll watch their mouth. If I still can't grasp what have been said, I'll get them to repeat or I'll just let it go and assume it's nothing that important. When my husband is with me, he'll be my reiterator :).

I don't want to do the Bilateral Myringotomy again because I'll need to be under GA and I prefer not to in a short span of time and too frequently. My ENT specialist said my hearing will get better when the fluid in my ears clear up as the mucus in my nasal area, in another 6 months to 1 year. We'll see when the time comes. Looking forward but not putting my hopes up, I'm open to any possibilities. I pray it'll be easy for everyone who speaks to me, especially them who I need to communicate constantly, hubs and kiddo.

Of late, I easily get anxious on every little changes to my body. Like every new soreness, pain, numbness, sensation, bump, imbalances and what nots you can think of. Even when it happened for a second. Doc said it's normal to feel any numbness, soreness or alike since my body is still recuperating. Any news or stories on cancer can get me unnecessarily anxious too. I'd wonder if I'm doing the right thing in staying healthy to avoid from recurring. Most of the time, I am sure and believe that I'm fine and well (even it's hard for me to hear most times :P). But at times I'd get unsure. I believe it's God's reminder to never neglect what's most important, myself - physically, mentally and spiritually.

I'm fine and doing good, Insyaallah.

What's up?!

I have not update this blog for more than a month! Well, I can say that I've been quite occupied;

Raya or Eidul-Fitri was great! I feel so blessed to be able to celebrate it. Alhamdulillah.

Moved back home. I had mixed emotions leaving my parents' after almost 3 months. I can never thank them and my aunty enough for taking care of me, for their love, support and doa during my most difficult times. But it was time and it's good to be home!

Resumed my stay-home-mom/housewife role but things are not like before. My energy is still not quite there and I still get fatigued (Chemo's side effect). Thus, I need to eat every 2 hours, drink 2 litres of water, get 8 hours of sleep and take a nap when my body says "you're tired baby, go lie down" hehe or in other words, it gets achy or my eyes can't stay open. But the good side of this is, the priority is ME not the dishes, laundry and etc. 

It has been 2 months after my treatment completed. Besides the fatigue, my ears are affected too. The right side is somewhat blocked from the sinus' fluid/mucus thus hearing can be a little limited. I can hear but when there are too much sounds/noises, it can get a little difficult to grasp. It doesn't quite bother me anymore and I hope those talking to me too. :) Dr Azrif and Dr Kuljit said this is due to the inflammations caused by RT. It may take up to 2  years before the sinus' fluid/mucus dries up.

My nerves are sensitive too these days, especially when it's cold. On rainy days, my skin would feel somewhat sore and also numb when anything brushes against it. For instance, the clothes I'm changing into. I guess this is an after effect of Chemo but I hope it'll go away.

I've gotten used to the dry mouth and my taste bud which is not quite back yet. Now, my husband helps to taste when I'm cooking but I'm also learning the new/different tastes. I've started taking very mild spicy or chilli infused food but with a glass of cold water in hand.

All these are still new to me. At times they do get me aka get me feeling down. But I'd tell myself and pray that I'll get pass it or probably get used to it. I try not to think that I'm not quite well but will listen to my body and prioritise my well being.

I did a nose scope about a month ago and Alhamdulillah the growth is gone. My full body PET CT-Scan is in 2 weeks and hopefully it'll confirm that I'm cancer free, Insyaallah.

Meanwhile, I'll try to complete my update on the treatments. ;)

Treatment Week 4 of 7 : Managing the Side Effects (and TheEmoBit :P)

Diet
The supposingly start of a sore throat or the lump in my throat that I felt in Week 3 vanished! Alhamdulillah. But I maintained the same diet. My taste bud started to get affected. I could only catch the dominant taste in the food/meal I took. If I had steamed fish with boiled veggies then I could only taste the fish and it would leave a strong aftertaste. Some food with mild taste like bread, crackers or fruits would be tasteless. My mouth got dryer too, so a lot of water was definitely necessary. I also developed acid reflux/heartburn due to Chemo. Even after taking Prevacid, there were times that it felt really uncomfortable and I would only feel better after I coughed out some of the food I had. Food and even water needed more time to settle than usual. I could take about 1 hour to finish a meal and 30 minutes for a glass of water. But at the same time I needed to eat frequently to beat the nausea. How about that? Eat and drink felt even more like work!

Oral Care
Since the throat got better, I stopped gargling with Difflam-C but continued with Normal Saline. Having the acid reflux/heartburn didn't make swallowing the UMF 15 Manuka Honey easier. There were times that I was forced to cough it out,disappointing indeed. But I would still took another teaspoon to ensure it was swallowed and kept inside!

Skin Care
Still on cold water, wet towel and Bio-Oil!

Oral Exercise
Did I still talk loudly? Not really. During this week, my physical condition was pretty stable but my mind sort of took over my body. I preferred to talk only when necessary. My mouth started to feel tight especially when I needed to open it wide like yawning. In addition, my sinusitis came back, phlegm started to build up and my nose would get stuffy especially while sleeping. But when the latter happened, I couldn't let myself breath through the mouth because it would get even more dryer! So how do I stay alive?! :) I would sleep without air-con and with the pillow upright, sometimes almost like I was sitting.

Energy
Getting weaker and I only left home for treatments. Being in the car would even tire me off.

TheEmoBit
Eventhough I was physically OK and halfway through the treatment, I complained and wished that it was Week 7. How ungrateful eh? Unnecessarily I thought too much about what may come in the coming weeks. I was overwhelmed by the changes to my body and the ritual I needed to take up as well as get used to it quickly, with the hope that my condition would not worsen. I tried to stay positive and distracted myself with funny tv shows/movies and entertaining my kid because she didn't treat me like I was sick. Praying and zikir helped a lot too but you got to believe it. 

Treatment Week 3 of 7 : Managing the Side Effects (and TheEmoBit :P)

Diet
Felt a small lump in my throat, like a sore throat was about to start. So, I stopped taking oily and spicy food to avoid it from getting worse. My mouth, tongue and throat were more sensitive. Everything with chilli tasted super hot! Aftertaste seemed to be enhanced, especially after having fish and garlicy food. I was still having rice but my fish and veggies were boiled, steamed or stir-fried. Guava after meals seemed to help with the aftertaste. I also started taking Ensure for more nutrient. Still on crackers, fruits and also breads/buns for nausea snacking. Water started to taste different too, probably due to the enhanced aftertaste but I made sure I took 8-10 glass of water everyday. Eat and drink seemed to be like a work.

Oral Care
Since a sore throat was about to start, I began gargling with Difflam-C Solution that was prescribed by Dr Azrif. But it was too strong and would leave my tongue feeling numb. So, I alternated it with Normal Saline. I brushed my teeth after every meal, to keep it clean and it helped to get rid of the aftertaste. I also started using electric toothbrush because the head is smaller and the bristles are softer. Normal toothbrush wasn't suitable anymore since my mouth was more sensitive thus prone to bleeding. To manage sore throat and ulcer, I began taking UMF 15 Manuka Honey as advised by Singapore's NPC Online Support Group. Actually it's suffice to take UMF 10 or 12 but I could only find UMF 15 from Elken. Anyways, I believe it has greatly helped me in preventing ulcer in the mouth, Alhamdulillah. I don't really like honey and this one is really thick! According to the support group, take a teaspoon (wooden or plastic, metal will kill the nutrient) then hold and spread it around the inside of the mouth before it is swallowed and don't drink or wash the mouth for at least 10 minutes. Hmmm, gag much? It sure felt like it! :) But since it has proven to be good, I am now at my fifth and final bottle. I took it after every meal (about 4-5 times per day) and at least once a day now.

Skin Care
Continued the same ritual; cold water, wet towel and Bio-Oil!

Oral Exercise
Still talked loudly :)

Energy
Slightly weaker than previous week and preferred to stay home.

TheEmoBit
Finally, I accepted that it's OK to be weak, let go and let myself to be helped and taken care. So, I went back to my old relaxed self but when the lump in the throat appeared, I started getting anxious about the side effects. Just liked I was told, things will get worst beginning Week 3. But, I psyched myself; I'll cross the bridge when I reach it and meantime I need to get used to the new ritual!

UMF 15 Manuka Honey

Treatment Week 2 of 7 : Managing the Side Effects (and TheEmoBit :P)

Diet
Pretty much the same as before I started the treatments. But my family stopped me from taking chicken and beef. They were advised by many that both can cause cancer. I was too tired and more worried about other stuff than to argue. So it was mostly rice, fish/free-range eggs and veggies! Sometimes, pasta and noodle too. I could still enjoy my favourite sambal tumis ikan bilis, ikan belah belakang and char kuey tiaw Aunty Gemok. Eventhough, they are spicy and oily but my mouth and throat could still tolerate it. I had my crackers and fruits with me all the time, to beat the nausea. I was prescribed Dexa after every Chemo, a steroid for nausea but only for a couple of days. But I seemed to have nausea all the time during the 5 weeks that I did Chemo. I think, I was the only patient then that came for treatments with a bag full of snacks and a bottle of water, at least until mid Week 5 when I still could munch. :)

Update: As advised by the nurse at Oncology Daycare, I took a lot of spinach to ensure my Hemoglobin was within range when I needed to do Chemo. Actually there are other food sources but spinach was my favourite and probably the only food that I like or could eat for this purpose. I continued having it even after my Chemo ended in Week 5 and up till one week after the RT was over. Since I had too much of it, I now prefer other veggies. :)

Oral Care
I switched to gargling with 0.9% w/v Sodium Chloride Irrigation Solution or in simple words, Normal Saline. :) After every meal or snack! I was still getting used to this new routine that was pretty troublesome especially when you need to eat frequently.

Skin Care
Switched to just running cold water and wet cloth to dap. A family friend who was a NPC survivor advised to apply Bio-Oil to prevent severe scaring. I did, twice a day after every wash.

Oral Exercise
I have to admit that I stopped doing the exercises by then. 
But continued to talk loudly/shout to my kid and hubs when necessary. :P

Energy
Weaker. I started taking naps and would prefer to shut my eyes while in the car, especially after my RTs. During the weekend, I joined hubs and kiddo at the park but I couldn't catch up with their speed. I needed to sit and rest after walking for a while. Never was that weak. Nonetheless, being out was good. 

TheEmoBit
I was still worried about troubling my parents and family as well as if hubs and kiddo were doing alright with the new arrangement. It was a little stressful, very unnecessary!

0.9% w/v Sodium Chloride Irrigation Solution

Bio-Oil

Treatment Week 1 of 7 : Managing the Side Effects (and TheEmoBit :P)

As mentioned in my earlier posts, I found out more about the side effects and learned on how to manage them from a couple of NPC patients/survivors as well as an online support group. Nurse Zuraida who took my temperature and blood pressure everyday was always reminding me on diet, oral and skin care. She was my cheerleader even more when my spirit was low. I heart and miss her. :)

I learned that skin peeling, sore throat and mouth ulcer usually begin between Week 3 and 4 of treatment. But that wasn't exactly the case for me. My skin only started to really dry up on the final Week 7 and peeling was for a week after the treatment completed. My sore throat only started to get bad, which forced me to only take soft and bland diet, in the middle of Week 5. It lasted until the week after my treatment completed. Alhamdulilah, I didn't have any mouth ulcers.

So here's the weekly overview. But as you may heard, the treatments and side effects as well as after effects react differently on individuals.

Nurse Zuraida advised me on diet, oral and skin care as well as oral exercises from day one. I'm glad that she as well as the Radiotherapists were never tired to constantly remind me on those important rituals that I still practice.

Diet
Eat while you can! :) I was aiming to gain weight too so I wouldn't lose much later. Eat frequently and timely to manage the nausea from Chemo. I had a lot of crackers and fruits in between meals. Drink a lot of fluid to flush out toxin from the Chemo med. But at that moment, I had yet to monitor the amount I took everyday. I wasn't even careful about my diet, I took everything that gave me energy. Dr Azrif also had no restriction as long as they are healthy. But being malay/asian, pantang/restriction is better or when you're unsure. :)

Oral Care
As advised I gargled with salt water, 1/2 teaspoon to a glass of water, every 2-4 hours or after meals. It was initially more to develop a good habit in ensuring my mouth was always clean. When the mouth starts getting drier in Week 2/3, it's prone to infection that may caused by bacteria from food particles.

Skin Care
I was advised not to use any chemicals on my face down to the shoulders, where RT is done. They said, just run it with cold water and dap it with wet towel. How can I? :) So, I asked my doctor if natural/organic based product can be used. He suggested 'Simple' and Vitamin E Oil because some of his patients used it and it went well with them. I decided to still use my Himalaya facial cleanser and body soap which I believed are of natural ingredients. But this only lasted a week until I turned to cold water and wet towel only, just in case. :)

Oral Exercise
Nurse Zuraida gave me a visual diagram of oral exercises. This is again more to develop a good habit that will be useful when the mouth and throat start to get tight due to dryness, sore as well as ulcers. I heard of a patient that had lock jaw during treatment. Somewhere mid treatment, I also found it difficult and slightly painful to yawn. Sometimes, swallowing became unnatural too.

Energy
It was pretty much the same until after my first Chemo. The nausea made me want to just lie down but that was impossible because I had to get up for food or it would be worse. I also get tired easily. I went to watch Madagascar 3 and slept midway. I never slept in cinemas except when I watched Seabiscuit and PGL, they were late shows and boring. :)

TheEmoBit
I consider myself strong and practical. Even when I had a bad flu/sinusitis, I'd be up on the go. But hellowww, it's cancer! :) And the treatments were really harsh and wore me down. I was fine initially and thought I could manage it on my own until probably Week 3/4. I even searched online for cases like mine and on how they continued their normal routine. I thought, if they can then it shouldn't be a problem for me too, right? But by that weekend, I was really disappointed on how my body has gotten weak so quickly and worried that the changes would affect my loved ones, especially my 7 year old kid. I couldn't even get up to prepare a decent meal for myself then how was I suppose to care for my husband and kid. Previously, I was never keen to ask for help until it was really necessary. By that Sunday, hubs,kiddo and me moved back to my parents' because it was necessary for me to be taken care of and it's OK to let them help me.

35 RTs, 5 Chemos - What is it like or not to like?

Dr Azrif wanted to start the treatment immediately but since we were leaving for an 11 days Umrah visit, it started a day after we came back with a Radiotherapy (RT) session. I didn't have much expectations and was pretty relaxed. I just wanted to get the treatment over and done so I can cure the cancer. At that time, I still haven't met any NPC patients/survivors, so I didn't know that the side effects can get really bad thus I wasn't anxious at all.

I did my RT at Prince Court Medical Centre's Radiotherapy Services Department. Everyday before the treatment, my temperature and blood pressure were checked. Whilst my weight was monitored weekly in the first two weeks and 3 times a week thereafter. Similarly, Dr Azrif would see me once a week then 3 times a week beginning Week 3.

What happen during RT? To ensure the x-ray beam hit the right target, I had to put on a hard-plastic-mesh-like mask to ensure I stay put throughout the session. Some measurements and marks were made on my face before I put on the mask that was then fastened to the board that I laid on. It felt really uncomfortable for the first few weeks but reciting selawat and zikir helped to get my mind off it.

Once I was fastened, I went under the Tomotherapy machine for a scan (about 2-3 minutes) then pulled out while the Radiotherapists checked/analysed my scan and set up the necessaries (another 2-3 minutes) before they sent me under the machine again for the actual thing (about 7-8 minutes). It felt and sounded like I was under a photocopy machine. I shut my eyes but I could still see glimpse of the x-ray beam and smelled it when it ran over my face then gradually moved to my neck and shoulder. 

My daily dosage was 200 cGy; totaling to 70 Gy near the growth but more on the right side where the growth is, 60 Gy on my neck and 50 Gy for my shoulder. So that should remove the growth and kill any other cancer cells at those areas right? Well hopefully, but not only that actually. 7 weeks of intense x-ray exposure also caused inflammation at those areas. I really can't imagine how bad it is inside but I guess the inflammation caused my sinusitis to come back, the bad sore throat and probably affected some good innocent cells that made my mouth dry and sensitive these days. 

After a couple of sessions, my husband said I have to get used to it or it would be difficult for me to complete my RT. True but I told him, it's not something that I want to get used to. No thank you. Beside doa,zikir and selawat, I managed to distract myself by thinking of holiday destinations for when everything is over, had a couple of reflections and there was also a time that I sang to Whitney Houston's Greatest Hits album that was played during the treatment. :) Overtime, I did sort of got used to it because my body was too weak to even stay awake during the sessions.

It wasn't easy too when there were some days between Week 2 and 3 where the machine went down during my sessions. It would take longer than usual since they needed to rescan and reanalyse. I would get very disappointed and tired because I had to manage my nausea too. But the Radiotherapists have always been understanding and accommodating in ensuring my comfort, thanks so much! Alhamdulillah by week 4, the machine was fixed. 

I had my Chemotherapy every Wednesday over at Prince Court Medical Centre's Oncology Daycare. Chemo took about 5 hours thus I'd usually start early in the morning before I continued with RT in the afternoon. Before every session; my temperature, blood pressure and weight were monitored. My blood was also drawn for Haematology where they would look out for my Hemaglobin, White Blood Count and Neutrophils results. The results would determine whether I'd be fit to proceed with Chemo for the day. Alhamdulillah, my results were within range throughout the 5 sessions.

Going through Chemo was actually not too bad for me. The 5 hours could be boring but I would nap in between, watched TV or BBM/Whatsapp with friends and family (single-handedly since the other hand had the IV line fixed). The only downside for me was probably getting poked for IV line. But the nurses at daycare were always so careful and understanding. They also took time to chat (and hear my 'sad' stories :P) even when they were busy. Gems!

At every session, I was IVed a lot of Normal Saline, one big bag before Cisplatin (the Chemo med) and another after. Basically, I needed a lot of fluid to flush out the toxin from Cisplatin. So I visited the toilet quite often plus I left every session with puffy hands and eyes due to water retention I guess. 

There's actually one funny fact during every Chemo. :) Somewhere mid session I'd be given an antiemetic via IV to prevent nausea and vomiting. This med has immediate side effect, an itchy feeling at the genital that would lasts about 10 seconds. Weird but true! The nurse warned me the first time around and I was shocked when it really happened haha!

As I said, going through Chemo wasn't that bad but the side effects is another story of course. But Alhamdulillah, mine can be considered quite mild because my Cisplation dosage was quite low. Nonetheless, it wasn't a walk in the park to manage nausea and heartburn when you were also fatigue.

Since I detailed much on my treatment here, I think my next update will be more on the side effects and how I managed it.

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! :)

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) :).

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!

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.

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. 

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 :(.