Live 15 Minutes at a Time

It's 2 am and I am not sleepy. I bought 1/4 portion of rice, fried chicken and fried brinjal. I find the chicken was very hard to swallow, heck, even the rice was hard to swallow... 

I probably ate 2 spoonfuls of rice, most of the chicken and 2 slices of fried brinjal and threw away the rest.

I will attend a course today. My friend is the person in charge. I guess I'll show her my support. I hope my body will show me some support. 

Normal chores like dressing up for work tires me. I don't know if it's the Cancer or the drugs. 

Yesterday, i took a Grab to the office. Walked in, climbed a short flight of stairs, I got so tired, I had to sit and rest for 15 minutes at the foyer. 

Instead of worrying about what will happen in a months time. I will focus on the 15 minutes. 5 minutes that has just passed, 5 minutes that I am living in and 5 minutes of the future. 

What I want

I've stopped craving for stuff. 

I think whatever food I am craving for doesn't taste the same as I remembered them to be. Order my favourite pizza, all I can taste was the oregano flakes. Order some other stuff too.. I guess I am beyond that. 

It is so disappointing. It's day if CBD oil and I've stopped crying about random stuffs.

The Morphine is causing me not to go to toilet days. And there is the sickly sweet stool softener. It is so unreliable. I drank it according to the direction... Had no bowel movement or a hint of it for 7 days then the uncontrollable diarrhea started. Last night u stayed up all night running to the toilet and cleaning up the floor. I've had too many accidents.

Enough about suffering. Let's talk about hope. I feel like I need someone to touch me. Nothing sexual. Just a human touch. On my feet, my hands and my fingers and my toes. They're hurting. A human touch will be nice.

I'd die happy if I can have that. 

Fingers and Toes...

Lately I have been having problem about how the tips of my fingers and toes are painfully tingly. 

Imagine waking up from a nightmare where you've lost all of your fingers and toes while all of your fingers and toes are still painfully tingly. 

Life is a cruel prankster. 

I'm Gonna Miss My Hair.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come back and change parts of it. So here goes... 

***

20th April. Exactly 2 weeks after my first chemo... I've lost most of my hair. 

These past few days my hair was starting to fall down in patches and my scalp hurts like my head was being hit repeatedly. Every time I touch me hair... At least 30 strands of hair will stick to my fingers.

I took the decision to cut off my hair

and trim my short wig... 

I am glad that I did... 

Lifestyle Changes.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come back and change parts of it. So here goes... 

***

This cancer changed me in many ways.

I can't have a good night's sleep. The pain gets worse at night. 

I had to use panties-liner because I bleed, even more so when I am stressed or annoyed. 

I can pass gas, pee and poop like I used to. Things need more persuasion. But I can't be too far away from a sitting toilet. 

I am thankful for the understanding I received from people around me. Most of them don't know about my disease, but I guess they can see that I am in pain. It's obvious. 

It's like having a baby.

I have made peace with myself.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come back and change parts of it. So here goes... 

***

I have made peace with myself.

It was hard to be asked to make a life changing decision that may or may not produce the best result.

The Surgery Doctor wanted to "remove my my anus, sew it shut, remove part of my bowel and open up a hole on my abdomen and install a stoma bag". That sounded alot. And I forgot to mention that this is permenant and I will have to take care of it and there will always be discomfort and a chance for infection.

After a long discussion with myself. I think I'll take my chances. I said no. 

The Greatest Betrayal Ever.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come back and change parts of it. So here goes... 

***

When you are eager to live life to its fullest, your body decides to pop some immortal cells in the most unfortunate of unfortunate body part that you have.

Anal Squamous Cell Carcinoma.

The pain is like being anally violated by someone that you hate, when you're not in the mod and unwilling, without lube. The pain is constant. 

Imagine going about your day with a big fat dick in your butt. Forgive me, but I am sure, you'll be as cranky as I am. 

What hurts more that this cancer? Well the I think the chemo is bearable, the long chemo drip, the hospital stay and the hospital food sucks. The radiotherapy was OK for a while. The only redeeming factor was the Chemotherapy staffs. They're a cheerful bunch. I hated being told to drink 2 litres of water and told to hold it in until the sessions done though. 

The recovery hurts more than cancer. It burned me. I was raw around my tummy, my groin, my genitals, my butt. I can't imagine how "cooked" my insides were. It caused my really bad diarrhea. The first night I came back, I went to the toilet more than 50 times. Imagine washing your burnt bum. 

Well, that's life. 

Me Against Everything Else.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come back and change parts of it. So here goes... 

***

It can be very frustrating when you are ready to grab life by the throat and live but then life snaps back at you and say "Die!" 

Sometimes I feel it is just best to agree with life, to stop fighting for things that I must fight for. I strongly believe that if you have to fight for something, beg for something or put huge effort to get something, then that something must be not something that is right for you. 

And this means that you shouldn't want it. I don't want it. 

End of 2022 and most part of 2023 saw me fighting monsters that life has thrown at me. Life has let loose many monsters that could have easily killed me many times over. I've fought all of them, beaten them and even tamed some of them. 

Now I am just tired of fighting. I am bored of fighting. I have lost interest in fighting.I just don't want to fight anymore. 

I know this is not a good mindset to start off 2024, but so far, 2024 has been nothing but hostile towards me. 

The Scary Treatment for the Scary Disease...

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come back and change parts of it. So here goes... 

***

Day 1- waiting. Nothing happened. 

Day 1- frantically called the hospital. Got a few back and forth call but the admission call came at almost 10pm. I got some clothes and showered. 

I was admitted to the ward at 11-ish pm. Got drip line installed immediately and let's call it a day. As per usual, I woke up almost 10 times to pee and poo. Each time I pooed, it was hard and only about an almond London biscuit. The energy of pushing those bastards was not worth the pain. So it was a terrible night for me. 

Day 2 

Ward 6TE, bed 8. 

5, not yet, an abang that looks like Encik izwan. a benggali boy with his loving family 

6. And old auntie with her hired philiphino nurse

7. A Chinese lady and her annoying phone 

8. Yours truly

9. An Indian man who refused to follow his "at risk of falling" label 

I was shocked to see a mixed ward. And I was shock that I had to stay in a mixed ward with one toilet. But hey... Patients can't be choosers. 

The old auntie was nice. She always say thank you to everyone. 

The other auntie next to her, well she s a different story. She was always had to be on her phone, on loudspeaker or she will play classic Chinese songs and nap away. 

I started manifesting change... Lo and behold.. They started shuffling the ward starting with bed 7. They switched up the ward to be all male with some of the males also being switched except yours truly. 

So now 

Bed 5, young benggali boy with his loving family

Bed 6, young Chinese boy

Bed 7, uncle! 

Bed 8 yours truly

Bed 9 shuib

I was in the middle of my "second dose" of chemo when the radio Therapy people called. 

What happened on Thursday 27th april-

Got my "second" chemo dose which turned out to be part 2 of the two parts of the first dose. So basically it lbs 12 hours drip x 2 for 24 hours (day 1) regardless of what day it is... So...

Anyway had to pause the chemo drip to go for radio Therapy. I asked the nurse nicely to let me take a quick shower and she let me. She also let me wear pants instead of the sarung! Yay! 

So I was escorted to the Oncology ward because I too was deemed "at risk of falling". At first, they wanted me to be pushed in a wheelchair which under normal circumstances I would love to, but my butt hurts and the wheelchair seat looks painful. So we walked together instead. 

At the radiotherapy Centre, I leanrt that Guarantee Letter I brought  is not in the right format so I will have to pay first for the procedure at rm500 per day and claim later. I didn't have my wallet with me but the officer said they'll allow me to continue with the procedure since I am coming from the ward. 

I still have to pay when I come in tomorrow. That's almost RM500 times how many days is five and a half weeks. Yay public service! Luckily I am allowed to pay in stages. 

The pain of having to pay first and claim later is as painful as the pain in my butt but I caught a glimpse of the cute radiotherapist as well as Mr bubbles. 

The radiotherapy was OK. When we did the simulation, the bed was longer and I have space to place my hands above my head holding the doughnut pillow... But apparently the bed on the real machine fits my height just right with no space for me to seductively lie down with my head above my head... So for 20 minutes I had to endure my aching arms above my head and pulling and tugging at the pillow doughnut. 

And did I tell you that they asked me to drink 750 ml of water and hold the urine in like your life depends on it.

I sat squirming on the waiting chair  and I was bleeding from holding my pee and what must be (in my mind)the flattest most butt unfriendly chair ever.

Then when I got into the radio Therapy room, the back of my white and light blue striped ward pants was tainted with fresh blood.

And I learned that the Oncology ward is like 4 floors away from chemo ward. I will tell you how I always come to Menara timur from Menara Selatan later.

So the moment I walked in, I told the nurse what happened and she was shocked. She asked me where I am working and she got another shock because her husband works at the same organization. At that point we're best friends while talking is saw that they were clearing the single room. 

I asked her is it possible for me to move there because I can't poo comfortably in shared bathroom and she said OK. So bye bye ward 6.

Hello single room bed 4 room 4.

I pooped a happy man before bed.

Third day... Is it third day? Of fourth? Hmm... 

So I am enjoying my stay in the single room and this nice nurse came in and took my blood pressure and temperature. Being a nice friendly guy (I like to think so) I smiled and she asked me... Are you an actor? I know where you work, but I am pretty sure I've seen you on TV. I just smile. 🙂

Now we wait for the radiotherapy call. 

Happy Birthday to Me.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come  back and change parts of it. So here goes... 

***

I've survived another year. Happy birthday to me. Yay. What ever that means. 

What have I achieved? I can't say much about that.

I hope I've made my mark so far. I hope that I've touched someone's life out there. There must be something that I've achieved. Maybe I've been too busy to notice it. 

So happy birthday to me. I've survived another year. I don't know how many years I have left. 

Not Meant to be the Main Character.

Disclaimer: these are my thoughts. It may or may not be as it happens, more likely the versions that I remember. I might come  back and change parts of it. So here goes... 

***

Kinda sucks when you know and expect things to fuck up along the way.

I remember when I was young, I read a book about Scandals of the Rich and Famous. King Edward II. If i remember correctly, I think he indulged in men and then fell out of power. He was then tortured and killed by having a red hot poker shoved into his anus. 

I cringed at the though of having the part that gives you pleasure being burned with red hot metal. Imagine that. 

Fast forward many many years in the future...

After bleeding in a toilet after watching a very long movie. I was diagnosed with Anal squamous cell carcinoma (SCC) stage 3, which feels like being anally violated by someone that you don't like without your consent, without lube, until you bleed, 24-7. It's painful to sit, stand still, lie down, walk and squat and the pain gets worst at night. Just imagine going to work, having to cope with the feeling of being brutally assaulted in the butt while working. It hurts. Physically and mentally. Even the biopsy hurts like a bitch. Imagine feeling the cut after being locally anaesthetised. Imagine feeling the warm blood flowing on your buttcheek while the nurses frantically wipe the blood off. Imagine feeling the stabbing of the needle as the doctor did his best to stitch me back up. The stitching didn't hurt at all but the cutting did. 

I went for the recommended treatment. I had to beg for my public service privilege and the privilege came very late. The doctor recommended 2 cycles of  5 days of Chemotherapy and 25 radiotherapy sessions. I went for the more expensive procedure called CIGMIT - Centre for Image Guided and Minimally Invasive Therapy according to the website, the radiotherapy centre utilizes a Novalis TX radiosurgery machine to provide non-invasive treatment targeting smaller tumours or to complement chemotherapy and/or surgery. Using a multi-directional high-energy beam, cancerous cells can be eliminated while sparing healthy cells.

If the cancer is painful enough, the treatment itself was very long as I had to be warded for the 5 days treatment (not including the 2 extra nights to put in the needle). 

The recovering from the treatment... Well, that's another story... 

Time Heals...

They say that time heals everything. But what happens when you don't have time. 

Then you die. 

life's like that

I am here, I am there. I am near, I am far, I am happy, I am sad. I am in pain  and I am numb. 

I feel everything and nothing all at once. 

Hopeful and hopeless at the same time. 

I am sane, I am mad. I am good, I am bad. 

I am alive...  I am dead. 

So many things to do. So little time.