After 2 years, 8 months and 5 days

My first treatment, that is Radiotherapy, was on 5 June 2012. It was so uncomfortable and I hated it. My husband told me that I needed to get used to it. I said, it's not something that I want to get used to. I never did up till the last day of treatment on 20 July 2012.

It has been quite stable lately, Alhamdulillah. Even the grommets have not dropped since its insertions in October. Not that I want them to! Though from the last two check-ups, one of it has moved from where it should be. I hope it stays put for as long as it can or at least until after I fly back home from holidays in April. But we can only hope, Insyaallah.

 

I still have those thick mucus in the morning. I try my best not to catch flu or any infections, because then my sinus gets inflamed and them mucus are even more thicker also sometimes bloody. Since the lining of my nose is dry now, it gets cut easily especially in dry weather. Once, I had a cut with bad infection even the GP was shocked I had like a boil in the nose. Ewww! But yeah, that's the first for me too. Hope that's it but I have to remember to keep it moist when it gets too dry.

I think, I'm at the stage where I know my post-cancer body better. So I'm less anxious and know what to do, treat or care for it. I'm more positive too when I go for check-ups and expects the usual 'everything looks good and there's nothing to worry about'. Alhamdulillah. I feel stronger but I know when to take it slow. I feel fine but I guess I'm still scarred, physically and mentally. Changed. Everything feels almost normal now. Except probably, the quarterly check-ups.

I like where I am now. I don't remember much of the pain and how hard it was. Good, I guess. But I don't want to forget. How much I don't want to go through it again, I also think, I want to be somewhat prepared if it happens again. That isn't positive, isn't it? Sometimes. Most times, I don't even think that I had cancer. 

Cancer is not me. I am actually Libra-n. :)

These writings and blog, is my personal health reference and hopefully will help them in need.

Don't Shout but Please Rephrase, Thanks!

My hearing has been quite limited for over two months now because the grommets in both ears have moved/dropped from my eardrums. It helped to ventilate my ear canal and avoided the constant build-up mucus to block it thus limit my hearing. I'm going to get them reinserted but it's not the first time I'm going through this and it may be not the last, I'm sure.

I'm siting by my home balcony, the weather is lovely and I bet the birds are chirping but I ain't hear any happy birds or even the cars that pass by. Sad but it could be worse. So I'm cool, trying to be cool about it most time, I have to. No biggie. Be grateful with what you have etc etc etc :)

But I'm not cool if I can't hear my loved ones well. Can't hear how has their day been and missing the important parts of our daily lives. I can hear but not clearly and it's frustrating to have them repeat what they said. For them and me. So here's something I found on the internet that can help them and me. Insyaallah.

A year and 4 months later from last post and Almost 2 years since I finished treatment...

Alhamdulillah, I've been good and better. 

"... true I am cancer free but I'm on another journey now. It isn't really a walk in the park for me but it gets better... when I start to acknowledge the cancer-treatment-affected me, physically and mentally. It's like learning new things about myself and accepting them so I can continue to enjoy my life. Generally, CANCER SUCKS! mind my language :P but it is and it also taught me a lot, mainly to be grateful and enjoy the moment, i try ;) "

I recently wrote that to someone who encountered this blog in search for more information about her dad's NPC. I hope he's taking the treatment well and on the road to recovery.

I've also been fortunate to share my experience with a patient whose recent MRI scan confirmed that she's free from active cancer cells. Good for her! Through her, I realised that I hardly think that I had it and how bad it was. But I'm constantly reminded on how it changed me to worse and mostly better. I don't think I'll ever forget and hopefully never cause I like the changed me. But it still sucks and no one should ever go through it. It's really unfair too when a child has to go through it.

Generally, I still live with the after-effects but it gets better and I guess I've gotten used to them too as well as overtime learn to manage it better.

One of my daily ritual is to irrigate my sinus cavity with Flo Sinus Kit. It will flush out those thick and gross build-up mucus due to scar tissues from the RT treatment. My life ain't complete without sticking the bottle up my nose :). 

I sometimes Flo ma nose twice a day, when I have the flu, my nose is blocked and seems heavier than usual. On bad days, I'm forced to breath through my mouth and it isn't good cause it dries up the already dry mouth to crisp! Ok, I may be exaggerating but some nights i wake up realising my mouth is open and pretty tight for me to even close it. So it's good to treat the flu and Omnaris nasal spray works for me. But, it also dries up the nose. So I use it sparingly. It's pretty painful too when the nose is dry cause it cuts easily especially when I irrigate it daily. That rhymes! :) Anyway, Flo Nozoil helps me with that.

Since the excruciating and emotional grommet insertion I had in March last year, the one on the right has dropped twice and so I had it reinserted it for the third time now. Thankfully, the procedures were not painful at all. I believe the doctors are much experience this time around. It isn't really necessary for me to have it but it's much safer for my eardrum especially when I have to go on flight and of course I can hear much better!

I'm more energised than I was last year. Alhamdulillah this Ramadhan, fasting seems easier. But still not quite like it used to be pre-cancer treatment. Yesterday, I was smart to mix cookies for Syawal, and all my energy went into folding the flour into the dough. Afterwards, I just lay down and couldn't wait to break fast. Lesson learnt!

I'm less anxious. But I'm still sensitive to foreign or new pain, tension, marks, sensation, conditions etc. I hardly encounter them but don't think they should be ignored. Good to have them check. I think, I'm getting better at living the moment and don't think too far ahead or what's even in the next second. I used to believe don't expect too much to avoid dissapointment. Actually, don't have any expectations at all, especially for yourself. Life is less stress without expectations. 

I've migrated to Australia and I love it here. I'm not too sure if it has done me good in terms of physical health but I feel it does to my mental health. I miss family and friends but being away has enable me to learn my limits and abilities better. I guess. Embrace the goodness around me and ignore them bad ones. Of course, I still have bad moments, I just got to let it pass and be grateful. I read somewhere that gratitude is the key to happiness, maybe :)

I guess that's all for now. 

Have a good day to y'all and Selamat Hari Raya if you are celebrating it soon! 

of Supplements, Anchovy, Acupuncture, Yoga and Runny Ears!

I always feel guilty about not updating this blog that often and the outstanding post on my week 5 to 7 treatment experience. Anyways, here goes :)

I've been suggested many supplements and alternative medicines since I first told family and friends about my cancer. Amongst them are Apricot Seed, Homeophaty, Ginseng, Prebiotic Powder Drinks, Virgin Coconut Oil and Spirulina. But I told everyone that I'd like to focus on the suggested treatments by my Oncologist and think about supplements after I've been declared cancer free. Nonetheless, as mentioned in earlier posts, I took Manuka Honey, applied Bio-Oil and drank Ensure milk as suggested by other NPC patients and survivors. Alhamdulillah, they all worked well with me and there was no adverse effect in relation to the Radiotherapy (RT) and Chemotherapy treatments I was going through simultaneously.

So when I was declared cancer free, I was pressured again to decide on the supplements :). I know everybody cares but I decided to listen to my Oncologist and follow my instinct. My Oncologist believes in eating right, exercise, avoid stress and no smoking. On that note, I gradually changed my diet and lifestyle to at least 5 servings of fruits/veggies daily, minimum 8 glasses/1.6 litre of water daily, avoid/minimise chickens and beef unless they are antibiotic free, free range, organic, australian beef (these are a bit tricky for me but I just go with my instinct), exercise for a minimum of 90 minutes/week, sleep for a minimum of 6 hours/night and try to relaxxxxxxxxxxxxxxx :). In addition, I take multi-vitamins pill and continue to drink Ensure milk daily.

They seem to work well with my body but I would still get anxious from time to time. Am I doing this right? Will I get cancer again? Every little story about cancer would get me worried for a couple of days. It was hard for me to relax. 

Then one fine day, I decided to try Acupuncture to initially fix my blocked ear. At my first meet with the Acupuncturist, I don't know why but I felt the urge to ask her if anchovy is considered salt-cured food. I've been told by my Oncologist that research has shown that salt-cured food is one of the main causes of Nasopharyngeal Carcinoma (NPC). I did ask him if anchovy is one of them but somehow his response wasn't certain thus I continued taking it as one of my staple food as I've done since small. As a child, I was a very picky eater. During family holiday trips, my favourite anchovy dish will be packed for the trips because I won't eat anything else. 

Anyways, Aunty June, the Acupuncturist said without doubt that anchovy is a salt-cured food and instinctively I believe her. Since then, I stopped taking anchovies, dried shrimps, shrimp paste and alike that are mostly used in Malaysian dishes. Sometimes when I eat out and I'm not sure if they are added as ingredients, I'd just rely on my instinct ;). I also avoid/minimise salt-cured meats such as beef bacon, pepperoni, salami, turkey ham and such. Since then also, my anxiety has been quite minimal :). If it does come by, I take it as some sort of a red flag and reminder from God.

I went for 10 sessions of Acupuncture that has not helped with my blocked ears but didn't make it worse too. Which is good for me. Aunty June's treatment also adressed my total well-being. Through my understanding, Acupuncture promotes blood circulation and cell regenerations. Thus, I felt more energetic and after-effects such as lost taste bud, dry mouth and build-up mucus are much reduced. But, my Oncologist also mentioned that the after-effects get better through time. Nonetheless, I feel Acupuncture has helped me to relax better even though some sessions can be a bit painful. I'll go for it again, now and then when my body yearns for it :).

I started Yoga again after 8 years of hiatus. I've always loved Yoga but I never made a point to practice it. Since my ears were blocked and limited my hearing, it was initially hard and awkward for me to follow the class I attended. But again I relied on my instinct and experience. I feel that the stretchings in Yoga help to strengthen my muscles and weak nerves. The poses that are sometimes awkward and require you to be upside down/inside out :) promote blood circulation which we know is good! Love, love, love Yoga and it also helps me to relax.

the serene garden i face during my yoga class

Just two weeks ago, I got my ears fixed again through the Bilateral Myringotomy procedure. But this time around, under Local Anesthetic (LA) and oh my what a painful as well as emotional experience that was! I have a high pain threshold until I had cancer. It may not be as painful as child birth (i think, since now I don't quite remember the latter :)) but it sure brought me back to those times when I had to stay strong to cure cancer while my body gets weak by the day. Yep, that's the emo bit :)! I take it as another reminder from God.

Alhamdulillah, I can now hear normally and it's not hard for me to communicate especially with strangers. There were times, I prefer not to go out and meet people/friends. Another ENT Specialist, Dr Yeo, had it done for me this time around since he's the only doctor from Prince Court Medical Centre who can do Bilateral Myringotomy without General Anesthetic (GA). I opted for LA because it would be too soon and frequent for me to go under another GA after my last and previous in November and April 2012. My Oncologist also advised against it.

that tiny white round thing is the tube
at my left eardrum

I now have tubes holding the micro holes poked through my eardrums to help drain out the build-up mucus in my ears. Naturally, it's the job of the Eustachian Tubes but mine are not working these days due to the harsh RT treatment. The inserted tubes at my eardrums can stay up to 6 months before they drop on their own, be it at home or a shopping mall :). I don't feel anything but occasionally I have minor ear leak issue or runny ears. Gross but that's life and I'm not complaining. This is better than lip reading and asking people to repeat what they said up to 3 times, that's my limit or I'll just assume or pretend to understand ;).

Generally and taking into account all of the above, my body feels almost like before I underwent NPC treatments but probably and Insyaallah healthier as I'm more aware of its needs. I listen to it now. I'm learning to relax or just let things be and enjoy the moment. Occasionally, I go back to my old over-analysing / control freak self but getting better at telling her to get lost haha! 

I'm due for another Head and Neck scan in April. A little teeny weeny anxious but shall not dwell over it. Insyaallah it will be fine. Insyaallah. For now, Alhamdulillah for this life that enables me to enjoy my current moment, updating this blog from a nice hotel room in Melaka since husband has work here and kiddo is happy minding herself. 

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.