Remembering Allahyarhamah Nurin

In two days I would complete my 25 Radiation Therapy sessions, which started on August 27 . Twenty sessions of photon radiation to my affected breast area and five"booster" sessions of electron radiation to the surgery scar area on the same breast. I had earlier planned to record what the treatment had entailed for me during the week, but got derailed from that plan as I was too much shaken by the latest disruption to hit our peace of mind - Nurin's fate. My eyes still well up in tears whenever the image of her lifeless face flashes across my mind. Like her parents, I was hoping we will find her alive. We did not.



I feel for her parents, for her entire family and for her close friends. I also feel for all the people who had known her(including the Pasar Malam folks) as they will eternally haunted by how her sweet, innocent life had been cruelly terminated by beings who should be wiped out of the face of this earth. If the beasts are caught and stoning to death is the sentence, I will be in the queue with a bagful of stones, that's for sure.


My experiences on Radiation Therapy can wait a while as I need to get these feelings of anger, sadness and despair dissipated and out of my system. I would like to convince myself she did not die in vain.


I don't know Nurin or her family, yet I get my tummy in knots thinking about how she must have suffered from that fateful evening in August right through her last breath four weeks later in September. Allah has mercy on her to not let the beasts continue with their deeds and decided to protect her by calling her back. Allah is all knowing and hard as it may be to come to terms with what had happened, especially for her family, things always happen for a reason.



Nurin sayang, you did not pass away in vain. So many before you had suffered similar fates because we are still struggling to make our country a safe(r) place. Insya Allah, because of you, an unfortunate 8 year old, other kids and adults will be made aware of how rampant this menace is and will use simple common sense to act and make sure similar incidences do not happen again. I hope you will forgive the people around you who could have stepped up to help and manage the situation better but did not. Rest in peace, dear sweet girl and semoga Allah mencucuri rahmat ke-atas roh mu. Al Faatihah.

Bouncing back in Ramadan

It's day 6 of the holy month of Ramadan...a month favoured by many to be a month of cleansing and purification, a month of introspection deep within one's soul, a month to do good, to be even better than one had ever been before.....a time for charitable acts, a time to strengthen feelings of kinship, and a time to be really true to one's self during which most worldly and materialistic concerns take a somewhat backseat......


What a mouthful! For someone who is fasting, I surprise myself at the mouthful of words that I have keyed into the previous paragraph. That is what happens I suppose if one has been unabashedly writing away, freely, whatever comes to mind when pen or pencil hits paper. And writing away every day, with no fear or favour - write, write, write whatever comes to mind in my trusty green journal, now looking very battered and abused due to being pounded on first thing in the morning upon rising and any time in between when I can have a moment in the comfort and privacy of my room, even in the bathroom. And squirrelling it away so that I don't see it when I wasn't writing, in case I have a change of mind and decide to change or erase what have been written earlier. It was so comforting to really write as it flows, no editting, no subconscious awareness that someone else might be reading what I had scribbled as honesty was the main theme of the writing and therefore, if chanced upon by others, some hearts might be broken and possibly, my poor, bald head might be broken along with that!


For my blogopals who might have wondered about my absence in blogosphere from the last post till now, please accept my assurance that I am still a keen blogger.....just taking a much needed "break" to drill into myself, to really discover for myself what makes me tick and what gets me kicking. My apologies for not checking my tm.net emails and the blog. I needed a break in a routine that constantly reminded me of my sad yet meaningful battle with cancer. Not that I can ever forget.


After almost 4 months of blogging about my experience with managing treatment, and just before my last and 6th chemo which I took on July 26, it dawned on me that very soon, there will be no more "weapons" fired into my system to kill any lurking bad cells. I will be on my own, entirely on my own, to ensure that I regain my health and not allow any future recurrence, Insya Allah.

While it was a relief to tell myself "aah, only 1 more chemo to go", I had felt awkwardly scared that I will have "nothing" to be fighting bad cells in me. Sure, the Radiation Therapy will assist with any residual traces of microscopic bad cells (as I like to tell friends, yang dah menetas and yang belum menetas) that might have eluded surgery and even chemotherapy, but what happens after Radiation? I have at that point in time, and up to this moment, entertained the option on going for alternative therapy to manage or bar future recurrence.


Unless convinced otherwise by my doctors, I am not looking to pursue Hormonal Therapy. Yup, no more drugs into my body after this, so no Tamoxifen. I know that Tamoxifen works wonders for others for whom the possibility of recurrence might be due to their biological or genetic make-up. For me, based on my self-analysis and introspection while undergoing treatment, I came to the conclusion ( further validated by the themes and contents of my "wild" writing spree during my blog silence) that the cancer cells invaded my system because I had not been very good in managing my stress, resulting in a lot of negative impact on my immune system and an unhappy blob at the back of my mind which I was not conscious of until it surfaced during my moments of self assessment and introspection.


The "discovery" was awesome, and scary. I need to change, I don't need drugs or another surgery. No surgery or drugs can remove traces of negative feelings, resentments, guilt or regrets that might still be flowing in my mind/body although I thought I had forgiven and forgotten. The fact that some events in my past still had the power to sap my energy , both unconsciously or sub-consciously mean I had not truly gotten over them. And for my own survival and well-being, I NEED TO GET OVER THEM.


No surgery or drugs or doctors can help me with this. I realise that the introduction of this disease is Divine Intervention of the highest kind for me, to show me that I need to stop, think and move forward without letting any errors, regrets or guilt from the past to haunt me or limit my creativity or desires. No prescription pills can make me let go of the past, no surgery can remove past or present resentments from suppressing my happiness. I have to do it, myself and take the necessary steps to do so. While I am the same person as the one pre-cancer, I just cannot afford to behave or react to emotional situations the same way as before. If I do, I will be back to square one, and pay the toll and face the consequences. And if I have an ounce of respect for myself, that should be my mission from here on....to improve me, in a holistic kind of way - mind, body, spirit.


If it means transforming myself so that I am not the same person to some of the people who knew/know me, then so be it. As long as I am still a worthwhile person, why should it matter if I am no longer as giving, to the point of deficit, both emotionally and physically? God has given me an opportunity to "re-invent" myself in the way I manage my reactions to stressful situations, to divert my energy to more meaningful pursuits other than undertaking thankless jobs of managing the burdens of others, to really evaluate what really matters to me in this short life (that can be hanging in the balance if I am not mindful of how I manage my mind and body), and to increase my knowledge about how to be better prepared to face the "next" world.


I would be really stupid if I don't interprete my recent experience(s) this way. My utmost thank to Allah, syukur Alhamdullillah, that I discovered the cancer, underwent a successful surgery to remove it, managed the challenges of chemotherapy and now, Insya Allah, am almost mid-way in undergoing 25 daily sessions of Radiation Therapy and still feeling hopeful and confident that I can overcome this. With Allah's grace, I really should seize the moment to act upon what I have discovered about myself so that the future me will have a stronger consitution and that my mind will ease and help my body ward of potential diseases, Insya Allah.


As I couldn't pinpoint a single "Lifestyle Factors" that could have burdened me with the cancer that was eradicated, since others are faced with the same lifestyle options and environmental stresses (and yet cancer-free), the only contributing factor had to be ME. So from here on, I will take full responsibility for my health, strengthen my consitution and pray that God will take note of my effort and help me along. For how can anything happen without God's will.


And this holy month of Ramadan couldn't have come at a better time, for me personally, as the month-long reflection(and terawihs) is really helping me to re-inforce my recent discoveries and my belief that Allah always has a reason for letting things happen, and that if we are willing to help ourselves, Allah is always on hand to give us a nudge and a tweaking every now and then, to urge us on the right path. Insya Allah.


As it has been for me, I hope the fasting, prayers, charity in this month of Ramadan will bring all my family, friends and ummah all the blessings and enlightenment that are needed for a truly happy existence. A happy heart is a healthy heart. Or is it the other way around? What does it matter, for as long as you are healthy, count your blessings and be happy to remain healthy.

May Allah bless everyone. I will try to post everynow and then to share my experience of Radiation treatment ( a few mentionable incidents there!). And on a more serious note, to jot down some of my "self-discoveries" which are honest findings, which made me wonder if other cancer survivors discovered any awkward/unpleasant truths about themselves that might have caused their cancer to grow and win round 1, 2 or 3. I truly believe we cause our own disease, not the ikan masin, dairy products, red meat or canned food! And that only we can heal and protect ourselves from the disease, no pills or drugs can stop it if our mind and body allow it to take root. Insya Allah.


Selamat Berpuasa, dear friends. Ramadan Kareem.....


P.S.
For those in the neighbourhood, our Sri Hartamas Surau holds a Buka Puasa every evening during Ramadan and a Moreh after Terawih ( lapan rakaat, by the way). Nice, simple fare courtesy of residents who book a date with a caterer to "sedekah" a Buka Puasa Juadah. It is open to all who "sudi" to come for prayers here. Small, cosy family atmosphere, just a small crowd of about 100, no parking problem at all. Me? I walk from my house, need to un-load the excess baggage ( 8 kilos!) slowly gathered during chemo. :)

Day 5 - Feeling really down

July 9 (Day 5 of cycle 5)

Syukur Alhamdullillah I managed to get a grip of my emotions. I agree with my close friends that it is a waste of time to emote and waste my energy worrying about things that will not and could not change. I need to focus on my physical wellbeing for now and keep my emotions in check no matter how challenged I feel on the situation.


To be fair, people must have reasons and justifications for their actions (or inactions). It is not for me to judge. What I can manage is my own reaction to the situation. And I hope dear God, that I will be fine soon to be able to make the trip and be with my dad. I will have to understand that they may have their own sets of limitations that prohibit them from visiting their own father, maybe the same or different from the sets of limitations that have been put forth before. And I must not take it personally on behalf of my father. Hey, he may not even notice it. Or does he?


The first week post any chemo is usually a "down"time, my mood is normally in the pits even without any additional stressful stimuli. This time there are so many, Allah is testing me to see how well I can balance my emotions and put things in perspective while faced with the side effects of nausea and fatigue and feeling helpless and dependent on others. I need to be really honest with myself if I am displeased with myself for being incapable of being there for my dad or with my siblings for their can't -be- bothered -he'll - be- fine attitude?


I am not going to waste more energy thinking this through. Insya Allah, I will pick myself up both physically and emotionally in a day or two, and will make the trip to visit my dad. I can't thank my friends enough, the ones who have come foward to offer to drive me to Melaka anytime and who asked me to give them a yell if I need them to help. May Allah bless them always and may their lives be enriched in return for all the kindness they have showered on me.


For now, I need to make sure I eat well, rest well and worry little and have faith that this situation will sort itself out in the way it is intended by the Almighty. The last sms from my dad is the same, he is still in the ward and I am not to worry and that I should take care of my health. And I will, Insya Allah. Eating is a challenge now and my appetite is the last thing that is occupying my thoughts. I need to remind myself that I have a condition to manage and what my doctor has advised, to manage my stress level while undergoing chemotherapy and its myriad side effects which can be draining on one's immunity and mental state. Depression is to be avoided at all costs.


I can't wait for my sister in the UK to be back in the country. At what, 14 hours flight hours(?)away, she has spent more time with my dad than all the other siblings in this country combined over the last few years, I think, through her visits. And she has a full time job and raising brilliant kids. I guess someone is right, it is all about priorities.......

Day 4 Cycle 5 (Gastric again..)

July 8 (Day 4 of cycle 5)

I had to wake up at 4am to make a cup of warm Horlicks as I was curling in pain, the gastric attacks are back with a vengeance. I am not sure if this was chemo drug-induced ( the increased dosage) or due to nervous and guilt secretion due to not being able to be near my dad in hospital. I was worried about him feeling upset that none of his kids are around, other than Darsih the fulltime care giver that was assigned to be with him all day.


I need to focus in getting over this hurdle of gastric pains and fatigue and Insya Allah, by Wednesday or Thursday I hope to be able to visit him, if he is still in hospital or at the Nursing Home, if by Allah's grace he has been discharged. I am truly upset that none of my other siblings have made an effort to go visit and be there for him or even discuss about how together we can come up with a plan to make sure someone is there.


It has always been my role to initiate, organise and plan and I ve never complained. However, when I am indisposed like this and very, very sensitive to unthoughtful remarks concerning my dad, I know better than to be a hero as it will affect me in more ways than one. He is our father for goodness sake and he is not well and someone needs to be around him just for reassurance. As far as I know none of us have a life and death duty here in KL that we couldn't leave behind for a short while to give a quick visit. I would go as my friend would drive me but I know my dad will be discouraged if he sees me in pain and looking pathethic like right now. I would wait for Thursday when I hope to be feeling better and able to motivate my dad. And beware the first person to call me then to ask how is dad?


I spent all day at home venting to friends about my situation and reading the Sunday papers. Some friends dropped by to help finish up the birthday cake and had dinner with me. I need to whet up an appetite as the tastebuds are on strike again and everything tasted bitter and awful and the strange after taste in my mouth did not help my moods at all.

What a timing to be faced with this dilemma. Which needn't be a dilemma if my siblings have been more responsive to my dad's needs. What had happened to them, how did they change, did having their won family change them? I would have thought that being fathers themselves they would need to set a good example to their own children? What values are they imparting to the kids? I know for a fact that number one sibling, with due respect to his highly placed station in life as a retired university lecturer, is sitting at home as both husband and wife have taken on the role of minding for a grand daughter. "Our priorities have changed, we have a grand-daughter now" was what they told us last year when we commented that they had never visited my dad at all since September 2005. What kind of b.....remark and excuse is that?


I am so upset and vented with friends. As if to comfort me they shared that they are in the same situation. We were so, so , so close before and things changed after Emak left us. According to my friends, friends are more responsive than siblings and relatives. But in my case, I am not expecting them to do anything for me, I was just hoping that all the kids will share in their role and responsibilities to make our parents' golden years happy. Dad is in hospital, can they not visit? Is that too difficult?


This is just an example of some of the cobwebby thoughts lurking in my mind that have been a real challenge to manage. What if I am no longer around, who would respond to my dad's call for attention. They will be the first one to visit him if they need anything from him, but when he needs them where are they???????????


Deep breath.....suck in air......deep breath....Ya Allah, please grant me the patience and the strength to manage this my way, and Ya Allah, please show me the way for You are all knowing. Forgive me for venting out over my siblings but You know our story and may You open up their hearts and mind that our father needs them too....As far as I know, none has contacted the hospital or the Nursing Home to find out how dad is doing. What is wrong with them?

I really need to relax so as not to aggravate my acid stomach. And I really need to focus my mind so as not to be sick and throw up, not because of the chemo drugs but due to this very testing situation.

Day 3 - Cycle 5 (07-07-07)

July 7 ( day 3 of cycle 5)

The side-effects are beginning to be apparent- the tiredness and fatigue. No mood to go out but forced myself to walk to the shops nearby to get the morning papers. By the time I got back to the house, I was tired and was ready to just sink into the sofa.

I had my usual breakfast of soft boiled eggs and toast, followed by the anti-nausea medication. I made sure I took some psyillium husks too and bananas in an effort to avoid another round of constipation as a result of the Emend. I rested while reading the papers. I wasn't really up to watching dvds, so listened to some Gamelan music to chill out.

I received a text from the Manager of the Nursing Home where my dad is at about 3 pm or so. My dad had complained of chest pains and although he was reluctant, Jenny arranged for him to be rushed to the hospital. My dad is now warded and is being supplied with oxygen as the doctor assessed that his heart is causing him to be breathless. He must be worried about me, and I feel really down that I couldn't zoom over as I would normally do to be with him. I passed the text on to my siblings here and have not heard back from them.

I spoke to Jenny and she said not to worry, she will arrange to have a nurse or one of her staff by my father 24 hrs. My dad does not like being in the ward alone, and in the past one will accompany him. I am not in a position to do so right now, and so are my siblings who have children and grandchildren to take care of. I told Jenny I should be fine and less sickly by day 5 and my friend RJ have offered to drive me whenever I need to go. I don't think I can drive the 2 hours to the hospital in my condition and I really appreciated her offer. It's incredible that at times like this, my friends are more receptive to the occassion than my own siblings and relatives. Is my family strange or what? I know better than to suggest anything as I get annoyed very easily if someone says the wrong things that shouldn't be said when it comes to family matters, especially involving parents.

I tried to speak to my dad on the phone but he couldn't hear me, so we exchanged sms via the carer's phone. He said not to worry and that I must take care of my health and get better soon. I told him not to worry about me as I have good doctors, and that he should relax and be tenang. He is still on oxygen and sound breathless, but he couldn't hear a thing I was saying. I pray hard that he will be fine, my sister and niece from the UK will be arriving the week of July 16 and we are planning a surprise for his 89th birthday on July 25.

Ya Allah, I seek your mercy and compassion to make me strong so that I can focus in getting myself feeling much better. Please grant me the faith to trust that the people looking after my father has your blessings to give him the best care he deserves so that he will be fine again. Thank you Ya Allah for listening to my prayers and doa. You are most compassionate and most merciful. Syukur Alhamdullillah.

Day 2 Cycle 5 - Birthday In Situ At Home

July 6 (Day 2 of Cycle 5)


I woke up very thankful to the Almighty that I am feeling fine today which marks another year as a, I hope, useful human being. My Onco popped in to check how I was doing and confirmed that I should be fine and was going to give me some sleeping tablets if I need to cope with sleep better. I declined as so far, syukur Alhamdullillah, I have been sleeping quite well. He reminded me about the warm compresses so that we should be prepared for the 6th cycle in 21 days time.


I received a lot of text messages from my friends and close siblings and their kids wishing me happy birthday. A friend and her son surprised me with a visit in the morning and God Bless her, she brought some gifts that will make my planned trip to Bali "complete" - a floppy hat to cover my bald scalp in case I forget!


I was able to drive home slowly and did not attempt to make any detours along the way. I just can't wait to get home. We found Blackie the stray cat waiting for us, wondering where we had gone. He was limping, no cuts or wound but limping slightly. He must have been in a fight with the tiger-sized cat that belongs to my back neighbour, we call him Kuning. Kuning must have tried to pinch some of the food we put out for Blackie in the automatic feeder and Blackie must have put out a fight, and got whacked in return.


Vik sorted out the stuff from the hospital and I got myself organised for the side effects to surface. Despite the Emend, Novaban and Dexamethasone, I still felt queasy, so imagine if there weren't any aids. I felt like Bubur Kacang so Vik made some. My late Emak swore by Bubur Kacang for constipation, so I am trying that out as well. My nephew came by and stayed until maghrib. A close friend had dropped a dvd that I had been wanting to watch "An Inconvenient Truth" (The Al Gore effort) so at least I know I have something interesting to watch.


Some friends were planning to take me out to dinner to celebrate but I felt a bit tired to be out and about, so instead a few close ones came by with a cake and candles and we celebrated "in-situ" right at home. It makes me feel all warm inside knowing that they had come straight to my house after work and I did not have to feel alone on my birthday. Not that it is a grand occassion, but for me it is a day of thanksgiving, grateful to be alive and knowing there are people who cared enough. I miss my dad who would usually insist on a cake and pulut kuning if he is around, but alas.


Syukur Alhamdullillah for another year and Insya Allah, I pray for many more good years to come to be with those who have touched my life in meaningful ways.

Chemo # 5 - Day 1

July 5 ( D-day for Chemo #5, Day 1)

Syukur Alhamdullillah we managed to locate a small vein on the underside of my forearm ( "comel" the Onco nurse described it). My Onco was quite concerned and planned to have a warm compress on the forearm if no veins bulged out. As the vein was narrow extra caution was exercised to administer the drug and throughout I felt pain and discomfort and a very strong urge to be sick, but managed to control myself. Syukur Alhamdullillah the chemo was completed relatively smoothly, starting at 10 to 1 pm and ending just after 4. I was admitted for overnight observation and felt less stressed up knowing that help is at hand should I need it. I brought Vik my helper along with me and in fact, I drove to the medical center today, to the surprise of my friends.


I was at the center early to get my pre-chemo blood test done again. At 9 am the lab couldn't locate a vein that will release blood into the syringe. This time, they did not bother to prick more veins on my arm but went straight to my foot and we managed to get a decent sample even though it was painful. I was going to test the vampire style of sucking blood ie if they couldn't get any from my foot, the only sure place would be the jugular vein. Hopefully we will not have to resort to that ever, I am already seeing fangs right now.


I rested well in the ward. My friends came by with some snacks ( a Big Mac for which I had a sudden craving although dinner served was a nice grilled fish) and boiled chinese barley to cool and calm me down. I was feeling hot and perspiring even though the airconditioner was at it's lowest. The stayed until about 8 pm and I tried to have an early night after the nurses checked my bp and indicated that it was a bit low. Again. It was the same the last time.


I thanked the Almighty for his blessing and compassion that saw me through the 5th chemo. All I need to do in return is to be strong and manage the usual side-effects. Michelle brought a powder that really worked for the sores in my lips, she bought it at a chinese sen-seh shop, it is supposed to be ground watermelon seeds, very bitter but minty. After 3 different assortment of cures, the sores seem to have eased up a little, syukur Alhamdullillah. The coconut juice, the gengigel, the orabase and the watermelon seeds powder-no, that is really 4 different cures. Glad they worked together and not backfire in my mouth.