Living with a chronic disease ( part 2)

My first round of treatment did not take place immediately. This is one type of malignant cells that need to be killed via radioactive active iodine. So in-order to do that, I was put on a one month iodine free diet. No foods with iodine because apparently cells of this nature needed iodine to thrive. The list was long. All kinds of seafoods are obviously first on the list of of foods to avoid. Reading the food labels on cans and packages, googling for more information for further information became the norm. Bought my own bread maker. Rice has iodine content. 

Steamed /roast chicken with pepper and iodine free salt foods was my staple diet.

 

The healing from the surgery took quite a while.  The voice was hoarse and sometimes inaudible to my audience. I went back to work about 2 weeks later. 

Then it was back to the hospital for the first dose of radioactive iodine. Once the dosage was administered orally. It was a complete cut off from contact with anything human. Quarantined in the room with no contact with anyone. Food was served on disposable plates and was left outside the door the doctor came in about 3 days later, all dressed in their anti radiation attire to check on the radiation level. I was released only when the reading levels came down to a reasonable safe level. That is not the end of the journey. Once home, its continued isolation.  Social distancing.

Then back to the hospital to check on the effect of that process.  To the nuclear medicine unit this time.  I was wheeled lying down into a scanner machine. The palpitations and anxiety came rushing back. But it was not too bad this time around. Once again. The machine was a bit friendlier than the MRI. And the process was for about 10 minutes or so to detect the cells.  Are they all killed by the radioactive thyroxine or are there survivors? A week later the doctor at the oncology clinic will disclose results of the procedure.

So, this was repeated after a six months lapse. And again after that,

In the meantime, it was back to routine at work. Consultation with my NPQEL students need to be continued. Before the onset of the next round of treatment, it was back to the one month of iodine free foods once again! So, I roasted a whole chicken, froze it and took it to KT for my 3 days consultation job at school (plus two loaves of home-made bread! And an electric pan to heat up the chicken!) In order to avoid being detected by the smoke alarm in the hotel room, the heating and cooking was done outside the room on the balcony.  

 

I resorted to buying a mobile microphone speaker. My voice was still weak.  No more high notes! lost forever until now! 

 

I opted for a three months medical leave, round about 6 months after the surgery. The effect of the the first treatment was finally sinking in. Ridiculously tired at all times. Not only was I off iodine during the pre-radioactive treatment, I was also off the hormone thyroxine.  This was to ensure the cells were completely deprived of iodine. 

 

Looking back, the lesson learned. The sacrifices. The journey towards recovery is far from over. Constant monitoring every six months through blood tests. Consultations with the oncologist, the endocrinologist. Juggling and balancing the amount of dosage of the medicines. To get the right dosage to keep the tiredness at bay. 

 

One important take away that I got from this whole exercise is that doctors need to know the symptoms. They treat according to what you tell them. If you have a splitting headache, then it’s the painkiller for you. If your facial muscles are twitching in increased frequency , then its increase in dosage of the calcium tablets.If you tire excessively, maybe the dosage of the thyroxine administered is not enough.If you come back and tell them you are having palpitations after that increased dosage, then its back to lower dosage once again. 

So, this is my life journey for now. Completely dependent on pills to ensure  continuous  metabolic  functions of the body. Constant monitoring by the health people.

 

So, how do I take it? My students used to comment. But Puan wan, you don’t look-stressed out. You look ok.  Well I will always tell them this. There is nothing you can do about it. Just go with the flow. Just go with the flow.  Keep calm. The last thing the body need is stressed situations. The way to fight these cells is not to give in to them. They love-it when we are overly stressed.

 

You never know how STRONG you are until being STRONG is the only choice you have. And what matter most is how you walk through the fire.

 

Allah tidak memberi kesusahan  seseorang hamba melainkan apa yang terdaya  olehnya )

(Al Baqarah 286)

 

On no soul doth Allah place a burden greater than it can bear.(Al Baqarah 286) 

Dan kami menguji kamu dengan kesusahan dan kesenangan sebagai dugaan; dan kepada Kamilah kamu akan dikembalikan (Al-Anbiyaa’ :35)

 

Every soul shall have a taste of death: and We test you by evil and by good by way of trial. To Us must ye return.(Al-Anbiyaa’ :35) 

Patutkah manusia  menyangka bahwa mereka kan dibiarkan dengan hanya berkata “ kami beriman .” Sedang mereka tidak diuji? Dan demi sesungguhnya ! Kami telah menguji orang orang yang terdahulu sebelum mereka, maka (dengan ujian yang demikian), nyata apa yang diketahui Allah tentang orang-orang yang benar benar beriman,dan nyata pula apa yang diketahui Nya akan orang orang yang berdusta ( Al Ankabut 2-3)

 

Do men think that they will be left alone on saying “ We believe”, and that they will not be tested?

We did test those before them, and Allah will certainly know those who are true from those who are false. ( Al Ankabut 2-3

Living with a chronic disease

How did you manage all this while? did you not feel tired when you climb the stairs? Those were some of the questions asked by my ENT doctor. A professor. Now retired. 

Yes. I replied. It thought it was due to my not so young age anymore. Well, climbing up 4 flights of stairs to reach the third floor was always a challenge to me. Every time I reached my class, my students would be asking me to take a breather, relax Puan Wan. Ambik nafas dulu, ambik nafas dulu. And I would be gasping, breathing hard for the few minutes or so.  I had no idea that I had underlying concerns.  

 

I was referred to him after a few rounds of tests and all...

 

It was in early 2014. A friend of mine, a colleague from the same department kept pestering me to go see a doctor. She had a problem almost similar to mine. I don’t know how but we were on health issues during one of our sembang sembang sessions. She was going on about how good these sets of doctors were. Just go, walk in if you wish and see how, she said. 

 

So, after much persuasion I went. But like all non-private hospitals, there is an SOP that one has to follow. You don’t get see the specialist on the first visit The MOs are the front liners. 

So, after the initial consultation, it was off to get a blood test done. To come back once the results came in. So, on the second round, I managed to see the same MO. Her words were. Well, everything looks okay. Your thyroid function is ok etc. etc. I don’t think you need to worry about anything. But when you see the swell getting bigger, come back to see us. So, my next question was, is there anything else that be done? Any other tests beside the blood test? She paused, looked at me. She said. Ok I will refer you to the ENT. So, with the letter to the ENT unit, I went to make an appointment. 

 

As usual, it was with the MO. After looking at my report from the previous department, she wrote a referral note to another unit. This time was to get a long thin needle pushed into my throat area. Some kind of biopsy procedure? Anyway, the results came back negative. So, my usual set of questions. Are there any other tests? At this point I appeared to be a bit pushy.  She looked at me. Pause. Okay I am going to refer you to the CT scan unit to get a scan done. 

 

Now, at this stage I was asking myself. Woman, are you sure you want to go through this? I am prone to palpitations and panic attacks. Especially if it meant going through covered machines etc. So, I kept pacifying myself. It’s going to be okay. The worst that could possibly happen is that you will die!  And it works all the time! Those comforting words of motivation! 

 

The CT scans results came back and that was the start of events fast forward. 

I was referred to the professor at the ENT unit. He had many MOs under him. One was put in charge to make diagnose on the CT scan results. Apparently, the scans captured were not too good. So, the next round would be the MRI scan. The Professor thought the procedure should be top priority. After a few phone calls, I was sent for the MRI scan.

 

Now, that was another moment of panic! Even worse than the CT scan! Anyone who has gone through that machine can relate the anxiety and fear of the whole procedure. And I was informed that I could not act up, the thing was going to be about 30 minutes. If you feel panicky, just press the button and we will cancel the procedure. But don’t know  when the next appointment will be.

 

So, I braved myself! Berzikrirullah. Once inside the machine, I play pretend. Like I normally do to myself. Ahh. those knocking sounds! Someone’s doing some carpentry works. Knock knock! I wonder what he is fixing. Ahh. There is another knock-on front side now.  I wonder who else is doing what. So, there was I how I kept my fears, my panic attacks, my palpitations from getting onto me.

 

Within a day, I received a call. The MO informed that the professor wanted a surgery done at the soonest possible date. Can you come down to the hospital? We need to explain a few things to you.

So, this next appointment was with professor. He explained the results. That was when the question the asked. How did you manage all this while? did you not feel tired when you climb the stairs. And so he wanted to have the surgery asap. He worries that I would just collapse one of these days due to total constriction of the lungs passage. That serious! 

 

The risks on the procedure was explained. He said my air lungs were constricted because of the pressure exerted by the growth of tissues around the air passage. So, they’re going to open up and remove those tissues. He was not too sure of what would happen after the removal. So, they’re going to put on standby the thoracic surgeon. Just in case the lungs collapse, the surgeon will drill a hole into the front of my throat, and I will be breathing via a tube.  I managed an ok. I understand. So, the surgery was set for two days after that day. It was going to be a straightforward procedure. But before a visit to the surgery procedure department. To take details of the patient. Height, weight, underlying conditions etc. To determine dosage of anesthesia to be administered etc. etc. That is my layman assumption. 

 

Anyway, on the day of surgery I was wheeled into the OT in the morning. After a round of SOP, I was ready to be cut up.

 

I remember waking up in the ward, the observation section. Many hours later. Not as predicted that it was going to take at the most 2 hours. It stretched beyond that. Apparently, once I was opened up, they discovered that it was a messy in there. They had to do a lot of clearing up. My Professor’s words about three mornings after the surgery. You must have prayed a lot. The lungs suddenly opened up when we cleared the mess. We didn’t have to drill that hole after all. 

 

I smiled at him. Alhamdulilah. 

 

But that was not the only news that he wanted to convey to me. They discovered malignant cells which they have identified (after being sent to the lab). They removed all my thyroids. They couldn’t save my parathyroid glands either. Total thyroidectomy.

 

So, that was the beginning of another new journey for me. 

 

To be continued….

 

 

Reflections 

Since I can remember, I always have a tendency to wake up at certain hours in the night. And the odd certain hour has always been at about 3 am in the morning. I dont understand why .  Was it because i always hit the bed very early?  And thus by the time it was 3 am  I have had enough enough hours of sleep? 

I always tire quite easily since young. And there was no force stopping me from closing my eyes and sleep! When I was young, maybe about the age of 9 , I remember I followed my late father to attend one of his work related shows that his information department put up to the public. In between the talks on the goverment policies and so on, there would be comic sketches , songs etc from invited artistes .And, I never fail to fall asleep, no matter how good these people in their acts, When it was time , my brain, my mind, my eyes wait for no man. And I would just fall off to sleep.

When I was already  a married woman and also a mother, I remember going back to my in -laws. There was a big event, where almost the entire kampung folks were guests at the house. Foods and drinks were served, guests lingered on after the eating. I was strugging to keep awake as it was already past my bedtime. It was most embarassing, but I just stretched out at one corner and dozed off.  And many incidents that happened back in my in laws place where I would just fall off to sleep much much earlier than my children. They were young during those years and they of course have plenty of energy to spare. So, it would be my husband’s take to keep watch on them. And because of that sleep pattern I would be one of the early birds , so to speak , to rise in the mornings while the rest of the house were still asleep. 

I have tried to change these sleeping  patterns. Even now I am still trying. Sometimes I am sucessful in  keeping late nights but  not for long. 

And nowadays, at this age, I am up by sometimes as early as 1 in the morning. Not that I sleep all hours during the day! At most it would a 3 hours sleep in the afternoon. Is that too long ? How can I make myself less tired and sleepy during the daylights?  I have listened, I have read  and I have carried out the tips and yet the patterns remains!

I can recall my great great grandmother ( my mother’s grandmother ) who was one person would be awake most of the nights. She would be on her bed, all alone in the room downstairs and being alone without company at nights, she would be sitting on the bed, in the enclosed mosquito nettings. My late grandfather once told me  in his voice of despair. He just bought her a box of curut (  local cigar ) and she would finish them in within a short span of days! Now recalling those moments, I really can understand the situation much clearer now. Yes, you may have a house full of occupants,  one may have a sleeping partner right beside oneself. But if you are the only one up in this ungodly hours while the rest are asleep, you feel that you are all alone really. All quiet and the only company is oneself. 

Oh of course some people are going to start making remarks like ..ya a good time for you to offer your sunat prayers, to read and understand the Quran.You should be so lucky! You are the chosen one! Yes, without doubt I savour these quiet moments to kneel before the Almighthy, to seek forgiveness, to seek solace. And I look forward to these precious moments now. I must admit that I was an illiterate in the understanding the written messages of the Al Quran. But now I have read many times over and everytime I read a particular verse, I find something new , a new hidden message which I have overlooked before this. So ya, it is a rewarding time for me now. Time well spent ,reflecting and consolidating those thoughts.And of course the clocki s ticking forward.  There is no looking back. I pray to Allah for his blessings and I say my thanks to Him for the hidayah ( guidance) that He has bestowed upon me. Alhamdullilah. You are the greatest Planner . This is the Hikmah!

 Dear Allah ,may You accept my prayers of repent., Forgive me for for all the negativites that I have in my mind about this situation . This is your plan for me. Alhamdullilah. 

Ash -hadu Anna La Ilahi Illa Allah. Wa ash hadu Anna Muhammadan Rasulu Allah.

O Allah, please bless us with eyes that see the best in people. A heart that forgives the worst. A mind that forgets the bad and a soul that never loses faith. Aamiin.