"Ya Allah ya Tuhan ku, izinkan hamba Mu yang dhaif lagi hina ini untuk meluahkan perasaan ku. Moga-moga dengan terluah nya perasaan yang selalu menghantui ku dan menggoncang ketenteraman jiwa ku, lapang lah dada ku daripada kerisauan supaya dapat hamba Mu ini menghadapi cabaran yang Engkau telah tentukan untuk ku. Hamba Mu ini memohon agar Kau beri lah kekuatan and petunjuk untuk mengatasi segala cabaran. Dan Hamba Mu ini memohon keredhaan supaya segala usaha ku untuk menghadapi cabaran akan berjalan dengan lancar, Ya Allah ya Tuhan ku. Hanya Engkau yang maha berkuasa dan maha Mengetahui dan pada Mu ku berserah, Ya Allah. Amin.
(I need to write what needed to be written in this post even though some aspects of what is written will delve into rather personal matters. I need to do this to draw out the emotional/psychological implications of what may possibly cause stress, anxiety, guilt, shame leading to a weak immune system that can result in illness.)
April 27 (Day 17 post-first chemo)
How self-absorbed I have been in the last few posts! It felt like someone else is talking about this lady who is trying so hard to drill back into her pre-cancer lifestyle and then fast-forwarding it to the here and now to see how the past might have contributed to her present. Whether you have cancer or not, it is a fact of life that what you are today is a sum total of where you have been and what you have been through in life. Input = Output , well, most of the time.
I had a harrowing morning shower washing my hair or rather my scalp, with a gentle baby shampoo when whole bunches of hair came off by the handful. Just as well I was alone in the house then or else I would have yelled for anyone who is interested to pop in and see the handful upon handful of hair that I was peeling from my scalp. Like de-feathering a chicken. Funny, grave, relieved, sad but definitely glad that I was expecting this, so the shock factor wasn't too great. But enough to contact friends to compare notes on their own experience and how they managed it.
I am undecided between letting all hair to drop naturally ( or coaxing them along by literally tearing my hair out) or go to a salon and have my head shaved bald. B.A.L.D.!!! The last time when I had Jeff my hairdresser to cut my hair real short, I cried, right there and then in the Salon. Poor Jeff was uncomfortable I know but he tried to comfort me. It wasn't a boo-hoo-hoo kind of crying, it was just tears streaming non-stop down my face.
Go Bald. That is probably quite practical if I cannot stomach the thought of manually tearing my hair out and in between making sure that I don't shed all over the place. Or perhaps the cheeky minx in me might invite some friends over and test their friendship by having each one pull a bunch until my scalp shines like Kojak's?
I could have just told myself "ah, finally the hair is off, this is due to the drugs.." and move on to the next activity for the day. But I tell myself, this does not happen to everyone and this does not happen everyday. Since this happened to me surely I should allow myself the time and luxury to ponder on why this is happening and if there is a hidden message in it somewhat. The treatment has it's side-effects which can be explained scientifically. By the time this is over, Insya Allah, I will have new hair, new skin, re-growth of new cells in my bone marrow and the rest of my body. And naturally by then a new perspective on life and death and what it means to be alive. It is like being re-born?
God is giving me an opportunity to look into myself, to be truly honest and realy look into myself. Should there be a "new" me? I will not be able to define what a new me should or would be. And I certainly would not want to be defined by my cancer of the breast. The disease is a reality check, a God-given brake/break for me to take stock and focus on self. I need to look at the "old" me and see if the "old" me should be groomed to be a "new" me, one that can sustain the new cells that will be me 4 months from now, if I fight hard enough to get through all the treatments. Will it be like a re-birth?
Reading accounts of long time cancer survivors, brave souls who have gone through what I am just beginning to go through in fighting the disease, and have succeeded in their battle and come to terms with the disease, the trend seems to be they come out of it, stronger, refreshed and renewed. I pray for the same.
I have never been so self-absorbed or self-indulgent as I have been in these last few months. Someone commented that I must feel really strange to be focussing on myself for a change and not running around for others. I am single, so really there usually would be no "others" but on reflection, there were a lot of others that I was living my life for. Who says single people are alone? By choice maybe.
I have so far examined all the easy bits on my pre-cancer life. The external environment and all the other Lifestyle factors are easily defined and to a great extent are all within my control. I know where I was and can choose what can change, not only for the better, but to add variety and do things differently. We age, the universe ages, so it is time to live differently(befriend our environment and go green) and eat and exercise differently, befitting our age. God helps those who help themselves.
The factors that are critical but not so easy to examine are the Internal Factors. Factors internal to oneself, that only one knows and have to be upfront enough to acknowledge no matter how the truth may hurt or embarass. That's why I have intentionally left it to the last. External and Lifestyle factors are outwardly manifested, easy to identify and with a little bit of discipline and self control easy to improve on or change. Not so with Internal Factors.
I thought hard about what this might cover and what might be relevant in my case. Some health proffesionals suggested that apart from Genes, Infections, Wellbeing (Emotional/Mental/Spiritual/Social) , personality and character may play a role as these would determine how one copes with stress which in turn affects one's immunity level. Low immunity resulting from stress causes your system to be weak. When your system is weak, your good cells are compromised and the bad cells triumph. And havoc will prevail in its various forms. Simplistic I know but isn't this reflective of other areas in life as well?
Since I owe it to myself to leave no stone unturned, and complex though it may be, I will need to be extra self indulgent in examining my "Internal Affairs". An honest to goodness self indulgence. I really don't know what will come out of this exercise but I believe in the mind-body association where health matters are concerned, and I feel that I will be doing myself an injustice if I do not pursue this aspect as thoroughly as I can. Even if I still end up lost and confused after all this, just having thought it through would be a relief and hopefully help in my healing.
Internal Factors:
Gene-What I have gathered so far based on hear say and accounts by relatives, no one in my family had Breast Cancer. I am the first. The first! How about that. What a legacy to leave to my siblings( my first degree relatives ) and their issues. My late maternal great-grandpa apparently died of stomach complications, but in those days people didn't talk Cancer openly, the C word may not even exist in their vocabulary and certainly not written in the death certificate. My maternal grandma had a growth on her chest bone but not resulting from breast cancer. My late Mum passed away due to heart failure and in the last 2 years of her life, apart from a weak heart and osteoporosis, was diagnosed as having CLL ( mild form of leukemia apparently common in old age ) and was treated with monthly blood transfusions. They all lived to a ripe old age and passed away in their 8o's. I could not remember much about my grandparents' illness but my Mum was a strong woman and took charge of her illness and established strong and caring relationships with her doctors. My Dad has irregular rythmns in his heart and chronic bladder problem(non-cancerous) and is relatively fit for his 87 years. My paternal grandparents had heart problems and hypertension. I am the first one with Breast Cancer.
Personality/Behaviour/Character-I was a type A Personality when I was much younger but mellowed considerably following the passing of my Mum in 2003. I was full of contradictions, wanting to be in charge but sometimes fail to realise that I have limitations. I wasn't very good at asking others for help and was constantly pushing myself really hard to get things done. I would do things that others would not. I shoulder a lot of responsibilities which on reflection should and could have easily been shared with others to lighten the load.
Although I have a well developed sense of humour, deep down I am a very serious person, I take everything seriously. I tend to be a perfectionst. I demand perfection in everything I do and do it meticulously from a to zee. Either I do something or I don't. No halfway measures or hangat-hangat tahi ayam kind of deal. Because I try to "give" with perfection, I demand perfection from others as well, and will feel let down if I sense that people are not committed. I am not perfect but I made an effort to be. When I felt shortchanged, instead of facing up to it and talking it out so that the imbalance might be rectified, I wallowed in my dissappointments. Makan hati ulam jantung. I was afraid of hurting the feelings of others or bashing their self esteem or confidence, so I put up with the "nonsense". This was a stupid thing to do. How would others know if I did not tell them? I had assumed that everyone with a level head on their shoulders would be reasonable. But I was mistaken and my perfectionist attitude and stupid assumptions can be dangerous as how would others know what was bothering me unless I tell it to them straight?
Yet I never learnt. I was always feeling sorry for people and because of that I was taken advantage of. It may sound gross to state it this way but that was it. I compared myself to others less fortunate and at times felt guilty that I did not have some of the problems they were facing, and consciously got myself involved hook, line and sinker. I thought being single I should be able to spare my resources and energy to help make life cosy for others. Looking back, sometimes at the expense of self . I did not know how to say "No!". It was difficult for me to say "No". And I am always rooting for the underdog. Always, but sometimes instead of getting a thank you no matter how small, I got bitten.
People say we are born with our character traits. If you are the giving type, you will always be the giving type. If you are Scrooge, you will always be Scrooge. I don't know about that. But what I do know is, when you give, you always get something back- a sense of fulfilment, satisfaction and generally a sense of wellbeing in an emotional and spiritual sense. The danger is when in giving, if you raise your expectations to get an equal or equivalent return someday, then you are setting for yourself a trap. And this trap could lead to all kinds of emotional upheavals and upsets.
When I realised this, it was too late. I was not and am not a Scrooge. I am a giver and I gave willingly. But sometimes I gave more than what I have,and that wasn't good for me. I extended and stretched myself thin, because I wanted to do it all and also because I did not feel comfortable feeling helpless and seeking the help of others. Why? Because I thought others should understand and offer me help without me having to ask for it. Because I have in the past sought for help very openly but was not taken seriously by others. They thought I couldn't be serious, how can this Superwoman not manage on her own when all these while she could. We have better things to do than help someone who is not really helpless!
Where does this take me? To a lot of situations when I felt that I will take matters in my own hands if others are not able to help. And usually these situations are not self-serving situations. These are situations where I really wanted to help others who rely on me for help but where I know it will be difficult to manage alone. I would rather suffer and toil alone than having to seek help from people who are too busy with their own lives to spare a minute or 2 to help me. Not really me, but the situation that I was trying to manage. It took a very significant event in my life to realise that this pride (or stupidity) can be very, very damaging.
I believe in Qada' and Qadar. And I am redha with what God has determined for his insan. But I can't help feeling guilty. Guilty that I should have acted more wisely and not let my pride and emotions overwhelm sound judgement. Would things have been different if I had? Maybe not. But still, I felt responsible for my Mum's passing. I usually stooped at nothing to give the best to my loved ones generally. Especially where my parents are concerned. I spoilt them rotten.
In October 2003, my Mum passed away in my house while I was at work, just 30 minutes short of the time when I was supposed to be home to pick her up during my lunch break to take her to see the Specialist. The week before, she was feeling poorly. I was away on an overseas business trip and wasn't due back until the Friday. She was feeling unwell and got the maid to contact one of my siblings in KL to tell them she wasn't feeling too good and may need to see a doctor. The maid was told that no one is free and it is best to wait for my return. On my return as always, I called my Mum and she wanted me to come home, which I did on the Friday evening. She did not look too good but said that she had been to see her regular GP for some medication for her upset stomach. I noted she was not breathing normally and took her to see the doctor again the following day. He advised that I take my Mum for a chest X-ray to check on her breathing. On Sunday I brought her to KL with me so that I could take her to see her Cardiologist as her breathlessness could be due to her heart.
I discussed with her on what the plan was. I said I could take her during lunch time the following day (Monday)as I needed first to go to the office to sort a few things as I had been away. If she wanted to go earlier, maybe one of my siblings can take her. That's when I was told not to contact them because they are busy, she would wait for me. The maid informed me then that she had tried to get one of my siblings to take my Mum but they were unable to, and My Mum had said, that's ok, wait for me to return. I went to work and called the IJN to fix an appointment indicating that my Mum needs to see a doctor urgently and they said to bring her to Emergency as her regular doctor was away.
After wrapping up a few things at work and notifying my staff that I will be out in the afternoon, I got ready to leave the office. That was when I received a phone call. The maid called from the house to say that my Mum was no more. Everything was a blur from then on and I was surprised that I managed to drive home and reached home safely. Full of sheer, unadulterated regret that I could have taken her to the hospital first thing that morning and not wait for lunch time. Regret over the fact that I should have called up one of my siblings and asked for their help (despite my Mum's protest of not to) to take her in the morning instead of waiting for lunch hour so I can take her.
It took me a long while to grieve over the loss of my Mum, given the circumstances. Could things have been different had she been taken to the doctor earlier? Only Allah knows, and Muslims believe that when and where you transit to eternal life have all been pre-determined from the moment you were born. It is God's will and I have learnt to accept that instead of challenging or lamenting on it, as this may amount to blasphemy. I have stopped blaming myself for it and moved on.
Sometimes I wonder why fate can be so cruel ? If there was a message, was the message just for me or was it also for others around me? I have closely cared for her all these while and most of the time put her needs before mine so why did she choose to go when I was not around? My Mum passed away in KL alone in her room with only the maid,(a stranger!), around when all her children in KL at that time could have been with her. Was it very difficult for her to call the others. Why was it diffcult for ME to call the others? Could it have been different if I had called up everyone and got them to come over? I will never know. Only God knows, and in God's all knowing wisdom, what happened to my Mum then was the best that could have been planned for her. And a lesson to be learnt by all of us.
I was not the same after that. I felt bitter and a deep resentment towards my siblings. I know it was not their fault, it was God's will, but where were they when I wasn't around and my Mum was reaching out for someone the week before? We (siblings) never discussed it and I don't know if anyone felt burdened with guilt or conscience of some sort. There were some discussions and reminiscing following my mother's passing and I discovered a lot of things and harsh reality about my family, not relevant to my cancer of course, but important for me to acknowledge so that I am better prepared in future about my expectations from my sibling with regard to caring for my father, now alone and without his spouse of at least 60 years. But I felt guilty nevertheless and my conscience bore deeply in me. Within a year of my mother's passing, I made the decision to leave my job and retire to stay and make a life in the Kampung. That is me. Pro-actively putting others first before self no matter what it cost. Was that a wise move? Leaving a cushy job and straight away from being a city gal, I dived headlong into Kampung life , one I am not familiar with save for the weekend and Hari Raya jaunts there? This will take me to look at my personal wellbeing, which up until the passing of my mother, I had always taken for granted to be good. Halcyon days indeed until then.
Emotional/Mental/Spiritual/Social Wellbeing- Emotionally, I am a very tough person but at times I can be sensitive but am very good at putting on that tough exterior.
Generally I am in control of my emotions and mentally I am strong. I quit my job and put myself in semi-retirement mode by living in the Kampung and learning the ways of Kampung life. I had plans of settling in the Kampung and setting up a home-based business relating to the tourism and services industry one day. I did some research on the agricultural sector and was a keen participant of any state or national seminars and conventions on business opportunities in the sector. I enjoyed my life in the Kampung and there it was easy for me to be spiritually closer to God. The environment was just so conducive as Kampung affairs revolve around religious events and the mosques/suraus.
I reinforced to myself the values that are important to me and did not regret one bit for having imposed on myself an early retirement from corporate life. In the kampung I got to know my relatives better and life was easy to manage as everything is within reach, and oh, absolutely no traffic jams. I was very happy as I can actually see and experience for myself the truth in the malay phrase "berbudi kepada tanah". I truly enjoyed my stay there and initiated work to
clear the piece of land that my late Mum passed on to me, with a view to develop a small homestay business.
God wanted to test me after a year had passed. A few things happened that only God knows why, that made my life in Kampung unbearable, however much I tried to accomodate the situation. For the sake of protecting the others involved in the situation, I will not go into the details as it would not be right seeing that they will not get to read this blog and come up with their side of the story. Suffice for me to indicate that the outcome(s) were pretty traumatic for me. Had it not been so ridiculously incredible, I could have offered a line or 2 to fill the gap over what had really happened. But it was something so ludicrous that I will not even attempt to explain. And again, I tried to reach out but no one who should and could help me was willing to. I don't blame them. I may have done the same if I were them, I don't know. But then again, maybe I won't.
I was one unhappy gal. Thank God I still have my own place in KL, left neglected all these while. And thank God I have not rented it out. I realised that I suffered from mysterious aches and pains at home in the Kampung. It could be due to stress because of the traumas befalling me. I decided to stay in KL so that I could pursue what I really want to do. If not for my father and brother, I would have entertained my yearnings to travel to a lot of the places that I haven't been. I have friends that I can visit and stay with, and write on my travels or teach English while away.
Back in KL, despite the persistent mysterious aches and pains all over my body, I made plans. I was going to travel, not far, but cover the Asean countries that I haven't been to- Indochina, Myanmar, parts of India, China , Australia, New Zealand and Indonesia that I have not been to. Now the plans are on hold with this sudden discovery.
It was a blessing my cancer was discovered while I am still here and not while engaged in travel. God must have a reason for choosing the timing, for God is all knowing. I can only be thankful. There will always be a time and place for everything, so it is good to approach first things first.
I don't really know how relevant my ramblings today is to factors that can lead to breast cancer. I only put it down as it comes to me, freely without censorship and hopefully months from now when I re-read this, I might be able to see some light or relevance. I guess I am practicing Freud's concept of 'free association' in expressing my uppermost thoughts as I write no matter how irrelevant they are.
And who knows therein lies something that I should re-evaluate and manage better, if only not to have to undergo the same stress and trauma.
Already just having written all these down, I feel kind of relieved and somewhat liberated, as though I have been repressing some things that I had wanted to say out in the open but couldn't. Now that I have written all these down, I guess I have a choice to press the delete key and forget that I have poured these feelings out (which may be unhealthy) or retain all that I had written and hit the "publish" key (and feel good about it).
For what it is worth, I am hitting the "publish" key and with it I hope to expel all the bitterness and resentment that I might still have been harbouring all these while. They are now on paper and no longer embedded in me and causing such unhappiness within my soul. I am not going to be afraid to say "No" and I will not feel guilty for putting myself first now. I need to heal and be healthy. I need to get out of this challenge and dugaan, and succeed like others before me. And Insya Allah, when that happens I will see the light and will be a better person to cope with and help the others around me.
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