herri's blog.com

Today is 4th december and he has gotten a high fever of 39.3degree. He was cranky this evening when he got back from school and went to bed really early. He woke up at about 10pm very active. But i checked his temperature it was 36.7degree. It was nothing till my hand touching his hand an hour later to find it burning up.

Severe Compromised Immunodeficiency Disease (SCID). It is an immune disorder that is absent in an individual. This is usually detected in a newborn screening done in Singapore when they are about 48 hours old. These newborns have to stay in isolation, preferably a positive pressure room in a hospital till they get a bone marrow transplant (BMT) or what they call it medically HSCT. After the transplant has been done, they still have to stay in isolation till their immune system builds up. During this process, there are many concerns (such as Graft Vs Host Disease, infections etc).

Back to my story, on the 19th September, we found out that he has this condition (based on the newborn screening result). We met with Dr Tash on the 20/09/2023 who had told us not to worry and that we have to do another set of blood test to confirm the diagnosis. He then gave us a pamphlet on SCID (done by Immune Deficiency Foundation) but try not to let it affect us. Hearing that made me and my husband feel a little better. We thought maybe his immune system hadn't kicked in yet or perhaps a wrong specimen was despatched under his name. We went home, still researching about the condition but not letting us get affected by it.

Oh, they even told me not to breastfeed Mannat (my second son) as they are worried that I have a virus that can be passed to him during breastfeeding. So I continued to pump every 3hourly to maintain my supply just in case I could feed him at the next appointment a few days later. Psychological aspect, me as a mother who delivered her son 2 weeks ago was emotionally affected that I would cry every few minutes, wondering why did I plan to have a second child, why when I knew I might have defective gene (my late brother had passed on of mitochondrial disorder when he was 13 years old. And I googled and it stated that it might have been passed down to him by one of my parents. I remember asking a Dr if I should do a genetic test to see if I am a carrier and if I was then, I would avoid having a child entirely so as not to go through what my parents had gone through with my late brother), but he told me not to open a can of worms and live life as it comes. Each time I carried Mannat, I felt so guilty that it was me that caused him to have this condition. The fact that he would have prolonged hospitalisations, multiple blood takings, multiple transfusions of IV Immunoglobulin (to maintain his immunity). I would always end up crying and crying. My husband kept on telling me not to cry. But how do you tell a post partum mother not to cry when her hormones are all over the place? He comforted me and told me not to worry and that I need to be strong. I remember telling him that I can't. I have gone through so much for the year (mother getting diagnosed with Alzheimers, mother in law having a heart attack, underwent bypass surgery only to pass on in the hospital due a negligence by the hospital (that's another story), me having bleeding twice while I was carrying Mannat and having terrible round ligament pains)). I found it hard to keep it together.

On the 21/09/2023, I received a Whatsapp message from the Immunologist Nurse stating that a doctor will be contacting us to update us about the result. Dr Liew (an immunologist from MEH) contacted us by a videocall (we requested for a videocall so we can understand better).

During the video call, he told us that Mannat did in fact have SCID. He showed us the results where:

T cells: 0. B cells: 0 NK cells: 91.

I was starting to tear up. I tried to control it as much as I could. My husband was trying to show a brave front but he was tearing too. I asked the Dr if it was related to what my late brother had as some of the symptoms was what he had (not growing, had chronic diarrhea, he was not able to keep food in, vomitting.) He told me that it was highly unlikely but they will consider screening him for it once they have treated SCID. He reassured us that a bone marrow transplant would usually treat this condition. I asked him about my IgG result to see if I could breastfeed Mannat and he apologised as he was not able to trace the result as he was in his clinic that was in MEH. He then told us that he would be meeting us at the hospital on 25/09/2023 and high chance that Mannat will be admitted due to his blood result. He would be given IVIG and some blood tests will be done and he will be discharged within a few days.

All I did in the next few days was cry and seek comfort in my best friend at work. She gathered information and shared them with me. Some of the things that she had shared was Mannat will definitely need a bone marrow transplant, require hospitalisation for almost a year (based on her oncology friends input) as the bone marrow had to be engraved into Mannat before he would be allowed home. Her oncology friend had shared that she had seen only 2 of such cases. One of them was a foreigner and the other was a local. I sighed at this news. I remember planning to resign after my maternity leave to look after my children. I wanted to be there during their milestones. I did not planned this to happen. But now, looking at the bright side of things, I would see Mannat's milestones one on one. Downside of it, my husband will not be able to see alot of his firsts.

It was about 10/11-ish when i received the most dreaded phone call from the Paediatrician from SGH. She told me that there was some abnormality found in Mannat’s blood test (our second born who was 7 days old) and that she does not know what was abnormal. She informed me that the immunology nurse from KKH will call me. I took her words literally like she doesn’t know. But tbh, how can a healthcare professional not know what abnormality it was and calling the parent to say about the test had abnormality but do not know what it was.

After i hung up the call, I called out to Minder to share it with him. I held my chest n told him the news. I said that I was scared. He reassured me and said maybe its nothing serious and not to overthink. But a post partum brain overthinks alot. The phone rang again and it was the KKH nurse. After probing more, she shared the results from the newborn metabolic screen. It stated that the Severe Compromised Immunodeficiency Disease was out of range and he had to come to KKH to repeat the test the next day. We agreed to come over the next day at 8:30am.

Meanwhile the entire afternoon, i was googling about his condition and crying. Minder was being very optimistic and said, “dont worry. Maybe its a false reading. Or maybe his immunity hasn’t kicked in and when they repeat it, it will be normal.” I cried, “ i hope that’s the case.”

I texted my work best friend who also googled and helped me ask her oncology friends about what is it about etc. she informed me that Mannat has no immunity and required bone marrow transplant to get his immunity. Transplant can happen if either parents, or siblings is a match or they will take it from the cord blood (which we didnt store, so we have to take it from someone else else). She also told me that Mannat has to be in isolation for months to a year. I was horrified. I told Minder about it. He didn’t want to look or sound panic. He just said it’s ok. Dont cry. I couldnt stop crying. Did I cause my son to inherit this gene from me? Is it my fault? Till date, this thoughts still linger in my mind. At one point, Minder came out of the toilet sharing more information about this condition to me. He told me not to worry. And that treatment is a success if Mannat doesn’t catch any infection. Hearing that made me feel better but to think that Mannat has to undergo so many blood tests and the poking, the line insertion. Waheguru. I cried again. I started to have these thoughts, why did i wanted a second child? I should have been happy with Akaal. Why am I subjecting him to all this pain? It’s all my fault. Will Minder hate me for giving Mannat this? What if he starts to despise me just like the Savour365 tiktok video. (It was an article about a young mom who has a sickly child and left her job to look after the child. After few years later, the child got very sick and had to be hospitalised. The husband started to get distant. The wife kept overeating due to stress. When the wife wanted intimacy from the husband, he refused to hold her hand, touch her or even kiss her. He then shared that he despised her and think that she couldnt even do a good job in looking after her son (even though she was a SAHM). He blamed her for it)). I was so scared that this will happen. Minder and I have been distant since the last trimester. He did share his concerns with me. And i agree that i have not been the best partner, not best in listening. I have always reacted when he made a statement. So he feels like it is best not to share with me. But lately, we have been a little better than before. Even though, he feels that i will always scold him or make comments. For instance, helping me change my spectacle frame, he said dont scold me if u don’t like it. I said i wont scold. I just need a new frame cus my glasses is falling off. He constantly said that twice to thrice which hurt me. Tbh, i couldnt care if the glasses was nice or pretty. My vision to look after my son was more important. He got the glasses and i held myself from making any comment that i used to make easily. I was giddy from the new glasses cus i need time to get used to it. So i dealt with it on my own bcus if i made the comment, he would respond with ‘i told you already. U wont like it. See lah.’ Frankly I am thankful that he got the glasses and they wont fall off so easily when i change Mannat’s pampers.

Married life is hard. It is not a bed of roses everyday. Intimacy doesn’t always been sexually or lovey dovey. It can be getting your spouse the spectacles that she needed, managing your other children while she manage the other one (i understand that i dont say it often but i do appreciate him looking after Akaal. But i get frustrated cus i am the only one managing the lil one the whole day with no breaks). This is a test of our patience, marriage, love. But it will be for the better.

I am on my second pregnancy. I am in my Week 36. I was having difficulty in sleeping at night. I always had to put two-three pillows under my head to sleep. Somewhere about week 28, I had this same issue, and i slept with two pillows and a neck pillow. After a while, my upper back would hurt so I would remove one pillow and sleep at my side. But this time, everything is not comfortable. I just feel like I am going to die lying down. I even tried to take piriton to calm myself down but I can't. I finally slept at 2plus last night. It brought back memories of my slipped disc. I remember to kill my time during the night, I would randomly chat with people on whisper. But this time, I do not have the mood, motivation to chat with other people especially on whisper knowing that they are there for one main reason; Hook ups. It's very hard to get someone to have a heart to heart conversation without them thinking that you can be something more. Yes, you may say why don't you chat with your spouse? He has had a whole day of working. Busy. Tons on his mind. I am just going to add in more stress to his already stressful day. Even if I share, he is probably going to just say relax, it is all going to be fine. This anxiety is a killer. Reassuring your loved one like that or any other way isn't going to cut it. I did the same thing to him many years ago when he had anxiety, until he switched off sharing what he experiences.

I feel like as though I am too bloated up that causes me to feel this. But at the same time, I am hungry. I don't want to eat because it will make me feel more bloated and feel more breathlessness. I started to have these palpitations every 3-5 mins. I do not know if its normal or should I get it checked out. I googled it and they say its normal. But I never felt like this during my last pregnancy. I know. I know. Every pregnancy is different. I do not want to feel like a hypochondriac. I've already been googling every single symptom that I have. It's not helping.

To add on to my whole emotions, My friend had texted me and told me that the areas that I cover are being distributed out to my other colleagues permanently. So it seems like my boss is trying to get rid of me. Boss actually said that since I have not been around in most of the areas and the department HODs want someone permanent there (which sounds like im always on HL, but she makes it sound like I sneak off somewhere to get rid of work, which i do but i still come back to the departments to check on them in the afternoon). I told her that as much as I feel horrible being in this department and that I plan to leave this area, it should not affect me. I take more leaves than anyone in the department. I do not contribute (I used to but I always get slammed down). And I already have intentions of leaving the department to either do part time nursing or agency nursing. I keep telling myself that I shouldn't feel bad or upset. But I still do. I told my husband about this and he said she shouldn't have texted you this especially at this time. It is causing unnecessary stress on me which I agree to. She clearly knows I am not coming back to work. Why make it sound like my boss is trying to get rid of me. it may mean that I am not going to be around for the rest of the year so she is giving it to others.

So in short, I feel damn lousy. I think I feel depress that I am not going to work and top it off, my son went to school today after almost a week of not going to school so I feel lonely.

I think I should just take up the trip to KL with my husband and be away from all this. But at the same time, I am also worried about my son who has grown attached to me. He is always finding me somewhere in the house to get me to be with him. I wonder if he will be able to sleep with the new helper, Khawl (She is about 1.5 months old). I am so fickle minded.

As the day gets closer to the delivery, i am worried that we will fight even more. I do not have the strength to argue with him anymore. It always ends up as my fault. Like i always find his mistakes.

You can have tons of money and throwing your money around for the world to see that you have money to distribute. But in time, it takes a toll on the relationship that you have built. It creates distance. Lending someone money repeatedly teaches one that you are their BANK. He has made this mistake before with his siblings and he is doing it again with his cousin. Soon enough, he will feel like he is being take advantage of and he will use that same statement, ‘you all think I print money.’ 

I too have come from a family that does not have money. But I do not use that to make someone feel like they are living off me. I come from a family where my father does not spend money on anything. He holds money so tightly that to get a computer or a handphone, I had to constantly beg for it. I was given only $1/$2 for my recess. Any amount more than that, you need to explain yourself for it. I come from a family where my father wasn’t working for a period of time and my mother was the only one working till she had to live her job to look after my grandmom and my brother. My father stepped in to manage the household expenses. Over the years, despite being well educated had to bow down to my father. He had to manage all the money that she does not have a single cent in her pocket. She too had to ask money from him. Set that aside, after this incident, I’d rather not resign from my job. If I did, then I will need to repay him the money that he has used to pay back my company. If I need to resign, I will get a bank loan. It reminds me about the time where to avoid the tons of questions from my father, I took a loan to manage my expenses. I’d rather do that than to hear that statement over and over again for the rest of my life. I never let my father make me feel unworthy of his money and I do not want this in my relationship with money. I value my self respect more than anything. 

Why is it that most men I know value money more than their relationship? Is money going to give them an eternal life? Would it make the afterlife better?

After trying for 6 years, we are blessed with our little baby boy who is currently 38 weeks old in me. Hehe. Every time he moves, i can feel his feet on my right upper trunk. Whenever I can feel his feet, I will gently press down and he will kick me lightly. I cannot believe there is a living person in me. But he has been good to me so far. He has only kicked me once that scared me. But otherwise, he has been good. 

The things that I hate in my last stage of pregnancy is the pain at my supra pubic symphsis area and groin pain that makes me limp.  It is horrible. When I am sleeping, it hurts. And when I want to shift position, it is so painful. I have to bend my knees, keep them together when I turn. Getting out of bed is so tiring especially every half an hour to an hour. But we can’t wait to see him. Everyone is excited for his arrival. 

I am counting down to his arrival too. Everytime I get pains, I keep wondering if its now. When we saw the Dr yesterday, she attempted to do a membrane sweep (a minor procedure to expedite labour), but it was a lil painful and she said its ok, we do it the next time. Next week, it will be Week 39 and I should deliver on 04/07/2021 (today is 23/06/2021). It’s like so fast. In another 11 days, we will see him. 

We have set up the cot, just need to put in his mattress, pillow and blanky. The changing table is in my room and the cot is currently in my helper’s room as there is not space to put. But once, he arrives, the changing table will be placed in the hall and, the cot will be in our room. Awww….can’t wait for our bundle of joy to come. Sometimes, I just wish I would just say induce me. Lemme see him quickly. But at the same time, I am worried that I might get depression cus I wouldn’t know what he wants. 

I don’t know if I am demanding alot of attention from everyone. I have a short attention span. I just wish I could channel my stories somewhere. Ventilate and discuss what happened at work. Like for now, I am not talking to Nad properly. She has her own issues la. Like we fought via text over my condition. I got no one to talk to. I don’t want anyone to judge me. I just want a friend to just listen to my nonsense. 

He is always so busy at work. Like today we went to the gym together, and halfway through, he started sending out emails and solving issues. And I am like I want him to be there. Talk to him while we are working out. I dont want to use my phone and chat with random people. I want to talk to him. 

He had planned this fully paid trip to Amsterdam and Rome in the beginning of October. What was planned was the UK trip after the Rome.  He was on a work related trip in Amsterdam and he asked me to join him. But he also ensured that he brought someone to help me around. He brought Karrena to tag along to look after me. It’s not like I needed a lot of assistance. Me and Karrena had gone out everyday when he was at work. 

We had gone to the Windmills in Zaans Schans, seen Dam Square, tasted the apple pie in Winkel 43, watched the buskers in Dam Square, tried Febo, went shopping, gone to the sex museum, tried weed in coffeeshop 420, tried the famous fries in Amsterdam, tasted the Lanskroon stroopwaffles (I give it 5 out of 5), seen a wet Red light district and saw the tremendously long queue for a live porn show. We were exhausted after our trip in Amsterdam. He was jealous that we had gone to so many places and that too without him. 

We planned our Rome trip together. We had loads of fun. He was exhausted till he said, I have never walked this much in my entire life, you made me so tired, I just do not want to move anymore. Haha. On the first day, we had gone to Coliseum. Messed up there as we needed to show the Roma Pas (A travel ticket that we had bought online to allow us to travel everywhere in Rome, inclusive of bus, tram and trains), we had to get the ticket and rush back to stand in line for the ticket. We saw the Coliseum and got wet in the rain. We had bought umbrellas on the spot for 5 Euros for one umbrella. Pretty costly. We took the train to Termini Station and walked around there and ate lunch at a really nice restaurant. It was worth it (1 pizza, 3 pasta, one glass of wine, two drinks for 48 Euros.  We headed down to Circus Maximus and took a few shots and then headed to Spanish Steps and had gelato. We headed back to our hotel. He was exhausted.  Day 2,  We had gone to Pantheon Temple, Piazza Navona and rushed to Vatican City for our Sistine Chapel and Musuem walkabout. Honestly the walk around there was exhausted af. We were tired of walking around the place. To be honest, we just walked by and not see much of the art work, we walked almost 4km in 90mins. And it was too crowded. And if anyone wants to see it, it’s best that you understand Vatican City and Romans history if not it’s pointless, after which we were so tired. We went back to rest. And our hotel was just a 5mins walk to where Vatican City was. While we were resting, he suddenly said, what do you think if we go to UK since Arsenal is playing this week. I was like you kidding. We do not have enough cash babe. But on the hand, UK is just like a 2.5 hour flight from where we at and we didn’t know if we would ever return. So after much thought, we booked our tickets to UK the next day at 0610hours. He asked what’s left to cover in Rome and I said, Trevi Fountain. So we went there. God!!!! The view of trevi fountain. It was so damn gorgeous. It’s so pretty. I was simply awed by the art work. We went for drinks and went to sleep at 12am and woke up at 3am, rushing for the flight. LOL. All the three of us were shagged, and worn down. 

We arrived in UK at 8am, cleared customs by 9am, We decided to take the train to our hotel. It was about 70mins with 3/4 train changes. It was exhausting but worth it. We enjoyed. We rested in the afternoon, dragged him to go out. He wanted to go Southall and Karrena wanted to go City Center. He didn’t want. So we went to Southall, we got off the train and saw the gurudwara was on the right. We went in and spend a about 45mins in there before we left, we were tired. and I was already limping. 

Day 1, we went to Big Ben but it was under renovation so we couldn’t see anything. headed to Buckingham Palace and saw the Soldier Musuem. We rushed to get a train to Kings Cross Station but I was tired of walking. He booked an uber to the King cross station to get the ticket for the Arsenal Game. And we headed to the game via uber as he was afraid that we might be late. We bought chicken nuggets and I unknowingly bought 2 Rose wine. I enjoyed sipping it while watching the game. I had no clue what was going on. And the next thing I knew it was over. He went to get his Merchandise from Arsenal and took a few pictures with the youtube stars. And we headed back. We decided to have indian food in the indian restaurant in the hotel we stayed at, Staycity Heathrow. 

Day 2, he had to work. he felt bad that he hadn’t worked and sorta lied his way to this trip. Me and Karrena went to Picaddily Circus, Trafalgar Square, had lunch a Wagamama’s, walked to Chinatown and went to Regent street and oxford st for shopping. We headed back at about 7pm. We had to pack our stuff again and sort out shopping loots... I was exhausted and it felt like I was gonna get the flu. We packed up halfway and slept. 

Day 3, we went for breakfast and  came back to complete packing and then got the hotel people to store our luggages for a couple of hours. We went to Paddington. We argued in KFC cus we ladies wanted to eat somewhere else and that he wanted to try the KFC. He got angry that we didn’t listen to him. He walked out and after a while, we calmed down and we went to an Italian Restaurant. We headed back to the hotel and an interviewer came to us to ask if she could interview us for the railway stuff. We said we werent locals and she came back to talk to us. It was really sweet. After which, we headed back to the hotel and left for the airport. Got a tax refund which was about 30 pounds. 

Points to note, 

Pack light (I used one set of PJs the entire trip). two/three tops, and one jeans, and a nice outfit for late night dinner and two pairs of shoes and one coat. That’s the way it should have been. We had overpacked. And had to stuff our shopping loots in various places. Lol. 

Get yourself a Holland Travel Ticket in roam (there are non peak ticket (41 Euro) and peak which costed 61Euros)

Things I had in me was, Redivac drain x 1, Urinary catheter, IV drips with antibiotics with painkillers and anti emetics meds.

But one thing was for sure. I didn’t feel the radiating pain over my leg anymore. No more numbness over the legs anymore. It was good. But the pain over the back was horrid score was ranging from 5-8 especially during movement. I couldn’t bear with it. Still on Morphine. Dr D.  was asking if I would want to ambulate but I said I didn’t want because of the pain. And he said it’s okay. No worries. Tomorrow, we get physio in. I said ok. He then explained then the previous surgeon empitied the disc space but he didn’t clear the disc that was protruding on the nerve root, that’s why it was causing so much pain. I was like the fark! You got to be kidding me. He took 20K and if he didn’t complete. I considered suing but Ahhh...wat the heck. Dr D. also said that he lengthen my spine already. Something that everyone would be happy but I couldn’t be bother. My pain was the one I wanted to be rid of. And the most important thing was no numbness over my right leg and no more radiating leg pain.

I was still disturbed by my half hand numbness. But I still thought  about it...nevermind...maybe I tidur during operation...maybe salah urat ker. I kept on massaging it. Opening and closing it on and off. Working out. Come on...please don’t jadi rabak... Nanti macam nak kerja balik. I was on Morphine 0.2-0.4mg/h. And trust me Morphine with that dose can really affect you alot. 0.5mg/hour made me eat and sleep...I literally snored. 0.2mg/hour was a baby dose. It didn’t hit me. I started the pain. I requested the painkiller to  up-ed it back to 0.4mg/hr. My sis in law went back to get her clothes etc. Baby stayed with me. My bestie of 20yr visited me, but I was too doped to entertain. She talked to baby for a while. Whenever I woke up, all I did was to open and close my hands to start working the muscle. That was the most disturbing thing in my mind. Boy was asking me to raise my leg up at least 6cm away from my bed. I did and he asked me how was the numbness. And I said I don’t feel it. But I still was flustered. But baby, I still feel my left hand numbness. How? How am I going to carry and lift the walking frame? How? There were so many hows? How did he expect physio to see me on POD 1. It seemed to far to be true. But ended up, I kinda agreed at 3pm to see the Physiotherapy. But it was too late. So I just said ok. I felt guilty for not agreeing to Physiotherapist.

I met with the night staff. I apologized to them for being such an asshole on the night before. I literally wanted to get out of bed. I wanted to do my own thing. I wanted to be like I was Endoscopic Disckectomy but they didnt allow. ‘They said the doctor didn’t approve. I said I cant find any position to get to rest. I literally slept and woke up every hour. I was sick and tired of being in bed. I turned as much I could but I couldn’t. I suggested for them to put in a drawsheet. It was or usually is placed behind a patient, in between their lower back and their buttock to mid thigh, so that it is easier for them to pull me up. And she did, it worked. I felt better and slept a little easier. But still I wasn’t happy with my numbness. But positive feeling. Half of my arm felt better.

Day 2 POD, I agreed for Physio. The same local nurse looked after me. She was dark skinned, with brownish curls tied up with the same vibe as me. She gave me a personalised feeling And I was still on the IV Morphine and I asked if she could position me propped up less than 90degree to let my body get use to it (one of the nurse was telling me that on my POD 1), and she did. And i complimented her and said some of your nurses didn’t know how to position me the way you did. And it was the best. Thank you for it. And she smiled. I didn’t give her a tough time.

Honestly as a patient, you just need to be told a few hard facts and someone who is firm and yet explaining thing to you that you need to do it this way, otherwise it isn’t going to work.

She gave me my medications and said we are going to remove the Urinary Catheter. Oh shit...I forgot to tell you, Urinary Catheter feeling. When your patient’s tell you that sometimes they feel distended there, it might be true. I felt it like that over the night and I called my friend and she adjusted, the tubing was soft, so it was kinked so the urine was retaining inside my bladder. I was like oh my god. So when she said that she need to remove it ...I was stressed...Oh fuck, I haven’t ambulated. I haven’t pooped for the past 3 days. How am I gonna pee. Oh fuck it la. Just remove it la. Get over and done with it. I got to start somewhere. They removed it and I was still on morphine and small petite Filipina nurse and a big sized Indian lady assisted me to sit up on a dinning chair. And I was telling the small sized Filipina nurse, “are you could handle me? I’m big sized, eh?” and she smiled and said I can. I got positioned on the dinning chair with IV Morphine, they made my bed and all i felt was so sleepy after. So I kept on dozing off on the chair. And I tried my level best to sit for at least 30mins

And I realised that it was 45mins,I called the nurse and said I need to pee. She was this chinese nurse who had uttered nothing but encouraging words. She seemed me local nurse. She assisted me to the toilet and she gave me my space. And it felt good to pee. So I went back to the bed and slept off. The physio came in but I was asleep. So she came back again. The thing about private is, the private treatment that I got which I liked and disliked. I wanted them to wake me up and force me to do physiotherapy and not just lie and sleep away.

So the physio came. She was a chinese short haired lady with spectacles  wore a dark blue polo tee shirt. She got the nurse to disconnect the IV Morphine. And taught me on the log and roll Lumbar corset and  we started to walk. OMG!!!! I walked hand held with her, But I almost swayed. She gripped on me harder and I apologised and said,” It might be morphine still.”She laughed and said its fine. Do you want to brush your teeth or do anything? I was like brush my teeth. I haven’t done that for two full days. And She told me to use a cup to brush my teeth cus I can’t bend. And then we walked outside till about 100-150m. She told me to remember to stand straight. Videos of me walking were going around in my family grps. Hahaha. Standard la. So I kept on ensuring that I need to start moving around. So I didn’t use Morphine from 12pm. And my bestie came with her husband and they talked. But I couldn’t concentrate. I kept on dozing off cus I was probably tired after the walk and the morphine. I apologized and they left and promised to come back again in the later dates. I felt happy. He he. I slept off on the bed. And I didn’t take the Morphine. It was still on the syringe pump.

I spoke to my parents about my day on and off. My mom in law was crying when she saw me walking. It felt good but bad. She cried to see me moving around. Awww. Baby came over to visit me, he brought my mom with him. and we spent a good share of time together. I was getting restless. I wanted to do more. I want to walk more. So we walked. I missed how he smelt. How he was.

I knew my aunt’s were coming. My eldest aunt came over to visit me yesterday but I was so sleepy that I didn’t talk much. The youngest came on my 2nd POD with my dad. I was fresh, I wanted to show them that I was better. But they didn’t come, so I just went in and out of toilet. My mom was glad that I was better. But once my dad came, I kept on moving up and down the bed with the corset. I never removed it. I kept on finding cool spot to sit as it was hot. I was restless and they all said it was cause they gave you so many painkillers, that’s why, n now when you are off them you feel weird. Oh yea, I was off the IV Morphine, the pain was there especially when walking. Pain was 3 at least. But it increased to 4/5 over at the back cus the morphine was wearing off. I got a malay nurse  to remove my IV cannula as it was red and swollen after my IV antibiotics.

I forced fed popiah as I didn’t eat the dinner as it was fish congee, just ate the congee but seriously I just didn’t feel like eating the rest. So my aunty forced me to eat at least 3 popiah pieces and I had my milo and Apple juice. And it was almost 7pm, and my sister in law, M realised that my lower part of my top was soaked, like it was drying up. And she got me to remove my corset and saw that the dressing had gotten soaked. So I got my ex colleague ( worked with her in private hospital), she was a filipina who had reddish brown hair and had permed her hair curly, and had braces on. She always wore a smile whenever attending to anyone. So she said she will change the dressing. She changed the dressing. And everyone left, Mom, dad, phua (aunty) and M left. Cus M had to get a whole new set of clothes and get her jacket. She was already falling sick, she had fever on day 1 of my POD. And honestly, she deserves one blog on its own. I spoke to Baby, And I tried to blog. Thank god, My laptop was there... We spoke at how things were looking good for me. I was happy. I didn’t feel the numbess on my leg nor my left hand. wait there was a little numbness over my left hand. But I was happy to start regaining my normality of my life. I just kept on walking and baby was pushing me why don’t you try to walk unaided without me. Like by holding furniture. I did. And I could. I was even more motivated to get back to how I was

I had gotten depressed over the past few weeks. I didn’t have a life. I felt like it’s best to end my life when my quality of life just sucked. I googled and checked emedicine.net on sciatica pain. People actually still lived with the pain. How could I? I couldn’t. I loved working. I loved every single thing about my job. I wanted my independence. I needed that. And this surgery fixed it. I’m lucky to have seeked a second opinion from the Dr D.

And Girl, whoever wants to go for surgery, please google post operative care plans. Honestly, I can be a sister, a staff nurse or a enrolled nurse when it comes to my treatment plan, I am  a fool. I wouldn’t know what to search or google about. I barely spoke to anyone. Maybe cus I didn’t want to feel like as though I was stupid or making the wrong decisions. But whatever it is, ask if not sure. But we learn from our mistake.

On the day of surgery  Lumbar Hybrid Fusion Surgery, I was shit ass scared. We (husband, sis in law and myself) to the Specialist Clinic. They did the ECG, Blood test, and they pushed me to the same ward I was at the last two visits. And this time, they shifted me to a suite. N I was I turned to my husband and said, “We cant afford this shit.” And He was like. Dont worry. And we turned back, and the nurse pointed to another room and said, “this is the room.” Whoever passed by me said, “Hey, you’re back.” I was like yea. Here for the big surgery. And admission was done. Time check, it was 1115hrs, and the nurse had said you can drink 200mls of water till 1130hrs. And I was so distracted about the surgery, that I couldn’t think of drinking of water. 

Both of them wanted to go eat their lunch. And I said, they are going to fetch me at 1245hrs. It’s already 12pm. And he said before they send you, make sure you call me. I was feeling nervous.  I had multiple thought in my mind. Running away from the surgery was one of it. But I remember him telling me, “Remember the pain that you have been through the past months. It’s insane. You barely could sleep. The OT (Operating Theatre) Nurse came and I told her, could you give him 5mins to get up here. She said sure. And he did come in time. I went to the toilet. And then we said our goodbyes and was wheeled into the theatre.

I was telling the nurse that I was nervous and she said, “hey, you’ve been here before.” And I then said the last time it was moderate sedation (a sedation they gave without putting a breathing tube down your throat), and now it’s a GA (General Anaesthesia) where they put in a breathing tube and cut you open. And everyone has been very nice throughout. I forgot to ask her name. Only nurse I remembered was Nurse Elenita. She was the one who said I remembered you but I do not know from where. Then I told her that I came over here for Epidural Steroid Injections two weeks back. I explained to her the situation and that it didn’t work as there was too many scarring of tissues. And she was like don’t worry, Dr Wong is the best. And I asked if they will insert a urinary catheter and she said no. They wouldn’t. Usually they wouldn’t. So I thought, let’s just go and pee one more time. I went and pee.

Next thing I knew that I was being wheeled to the theatre. And bam! I was in the theatre. Damn. My last chance to say no! I looked around and I saw them asking if I need warm blanket and I said, “You mean the bair hugger?” And the Chinese nurse (Claire? Clarita? Can’t quite remember her name but I think she was a sister in the OT), n she tried to dig out a little history of mine. She found out I was a nurse and she wanted to know the reason why I didn’t do it in my hospital, and I explained that they didn’t even detect my problem. I found out the reason that it is in a private hospital. And she was like okay. I was trying to figure out who was the Anaesthetist. There was this lady who asked me when was my period and I answered, and she made me signed a document stating that I wasn’t pregnant as they will be using Xray . I signed it. Still trying to figure out who was she. What role she played. She was on the phone and the Chinese sister was holding on to my hand and reassuring me. The next thing I heard was Dr. D, coming to me and saying where is it running down. The right? I nodded. And the next thing he said firmly, “Prepare Urinary Catheter?” I was observing the spacious environment, seeing the nurse Elenita gathering her heavy equipment and the big light over the OT table. The OT table wrapped the same way it was for my endoscopic discectomy table.

The Chinese Nurse came over to me and I lifted my hand and said there is no Cannula. And she was like ok. No IV cannula. The Chinese nurse was all ohh… and she was finding the vein for the Anaesthetist, Dr T came and raised my right hand, and administered an local anaesthesia over my right and n said, I’m gonna be setting an IV cannula , and she did. I tried not to move my hand as the nurse pasted the transparent dressing. While he was applying the dressing she asked, “We will be administering suppository anti inflammatory in my anus and whether I agreed. I said yes. She was a little stunned when I agreed. How about Urinary Catheter? I said that’s what I asked the nurse because I am wearing a tena pad just in case I peed during the Op. And she said it’s fine if you didn’t want, it’s okay. I said, I agree for it too. And she said okay. Someone passed her a kidney dish. And in the kidney dish, had the anaesthesia medication. “I’m gonna be given the anaesthesia. Just relax.” I had a mask hover over my face. And I breathed in once and then twice and I was out. I don’t remember anything in between the procedure until I started kicking and screaming in pain. And I remember stopping and asking for a person’s hand or arm. I squeezed the hand so tightly and I apologised as I squeezed and Dr T asked are you in pain? I screamed, “of cos I am in pain!!!!” And she gave me IM Pethidine while explaining it to me as she gave it.

In 12 hour's time, I'm going be in the theater. They might be cutting me by then. I have mixed feelings about this. I've got mixed feelings for this operation. I feel scared and nervous (which is legit) and the same time, I can't wait to for the pain to be over and for me to sleep in that 5/6hours of surgery. I'm sick and tired of the pain. It doesn't let me sleep. I even dream of the fucking pain and wake up in pain. I've had enough of this. At the same time, I'm afraid to wake up in severe pain. Plus I'm worried if there will be other complications after the surgery. I don't want anything bad to happen. But if anything untoward were to happen. Celebrate my life. I had a good life. When I lived, I tried to lighten up people's mood and always smiled. So don't mourn my death. Do the basic rituals.

For my love, if I'm no longer around you can always find someone to be your companion. I know you are gonna say you'll never find someone like me ya da ya dah shit. But you have been there during my good times and my bad times and times where I've made horrible mistakes and yet you forgave. I hope you can handle my parents. They will be a handful once they find out. Please explain to them that it has nothing to do with the Dr. He did his best. Things happen...it all depends on fate. I will definitely miss everyone of you, hopefully i still can feel some emotions. Yup. That's about it.

I love you!!! Remember I will always be there when you need me. Just that you wouldn't be able to see me...but might be able to feel it.

I was sitting on the wheelchair outside the toilet, I looked around and saw groups of people gathering outside the toilet, waiting for their friends to come out. We had just seen a movie. I observed a Chinese girl with a Indian couple. The Indian couple were talking amongst themselves for a while. The Chinese girl frowned and tried to decipher what on earth were they speaking. And then another girl came over, she was Indian as well. So they started speaking in their language and the Chinese girl was lost in translation. And I felt bad for her. After probably a full 15mins later, I heard them speak in English about how to head home. I was like finally some English.

Honestly, umm. What was that word called. Not sure if it’s called Social Etiquettes or Basic Etiquettes. How would you like if you were placed in the Chinese girl’s shoes? When you couldn’t understand anything? Personally speaking, if I was in her shoes, I would tell them off. Like come on, Excuse me, I am here. There is a limit, if you are talking amongst yourself as husband as wife, it’s fine. I get it but when the other girl came in? Am I non existent? Am I a ghost or something?

I was admitted in a hospital in KL somewhere over last diwali. I could stand the pain no more. I was admitted for about 3days, i think. I was given painkillers. Honestly, I forgot what they were but they were so much lesser than what I am on now. I think it was Norgesic, Celebrex, Omeprazole (I think). Everyday, I would wait for my love to come before we’d walk. I struggled to walk. I could walk about 100 meters, then the pain radiated down to my hip. It caused a jam. I couldn’t walk. Like it was rusty had to be oiled, I felt like that. I got angrier when my hip didn’t cooperate. So on day three, when the orthopedic surgeon came, I told him. I said I couldn’t even walk to Starbucks., not even half way there. So he suggested that I meet a Dr who was an anesthetist, he does this so so procedure and patients can walk. I was like ah fuck it. We’ll do it. 

An older indian Dr walked in. He was old. And I mean real old! like a grand father, He had white mustache and a really messy Albert Einstein’s white hair. It was creepy, He proceeded to tell me the procedure. I agreed once I heard that I can walk. Excited af. I asked if there was complications or risks. And he brushed it off. And he pushed the nurses hastily to get over and done with their formalities. I was removing my necklace and he said, u can keep that on. I said no, i thought the operating theater didn’t allow all this. He said no need. First time, an Anaesthetist pushed me down. I was like woah...weird af. Lying down on the trolley. It was hard. I heard the wheels moving as I was staring into the ceiling, watching me pass by every light as they almost become one as he pushed. 

Next thing I knew I was in empty room.  He asked me to turn. I felt something cold on my back. He told me hug my knees. And that’s when I got hit...WTF Shit...He is just doing it now. Fuck, no BP monitored nothing. He injected the Local Anaesthesia multiple times. And he said ok, going in. I stayed as still as possible. I pinched my skin with my nail as it pierced through my skin and in between the spinal spaces and then into the Cereberal spinal spaces. I felt a pressure in my head. Like I was getting a headache. I slowly breathed out. And then I felt my headache reduced. Like there wasn’t any pressure. We done? Are we done, i thought to myself. Shit. He didn’t tell me shit. And then he says, “Girl your vertebrae spaces are so tight, I need to go in again.”WTFFFFFF! AGAIN. I sighed! He did it again, I was speechless. I pinched my skin to divert the pain. Something I learnt during my school days. He was in, I felt the headache again. And I heard him say, “We just put the catheter in... we injecting the steroid in....”I was fading. I felt cold sweats. I felt like I was gonna vomit. I looked forward and saw the door spinning. “Nursee...” My mouth so dry. I don’t think she heard. I turned to look at her. My arm turned limp. She saw me and said, “We almost done. He just taping it down.” And I slowly closed my eyes and swallowed what little saliva I had. And the Dr said, “we done.” And he turned to the nurse and said, Ökay you tape up. I will come back at 6pm, to give another shot.” He touched my skin and said, “Wow, you are sweating.” She pasted the tape to secure the catheter. OF COZ!!! I AM SWEATING. MY BP DROPPING! “I was too weak to argue. I was turned to lie on my back. I asked the nurse if she could check my BP.  She said that they were pushing to the reception and they will check it there. Slowly  When I reached there, she checked my BP, I turned to see, she covered it. I clearly saw that the SBP (systolic BP) was 77, so it was damn low. Then she mumbled to her friend, and her friend said in Malay to recheck in 5mins. FYI, I didn’t have an IV access. Nothing. I felt myself getting my strength but not on my lower limbs. It was pins and needles. She took the BP, it was 80s, and she said it’s normal. The fuck, bitch, it wasn’t la. I nearly fucking died! I asked umm, is it normal to feel numbness on the feet and how long it would last. She said its normal, It would last a few hours. Then I was pushed back to the ward. They took my BP, it became normal. Before they left, they told me that I needed to lie straight for 4 more hours. I said ok. And they left. I wriggled and reached into the drawer. I called my mom in law and on Video call, she asked wat was the thing that was dangling on my chest. I told her that it was a Epidural Catheter and I said I was too sleepy, I cut the line and updated my mother about the procedure and said I’m going to sleep. I texted in the family group that I was out of the procedure. So I slept. 

I woke up in 3 hours, I went to the toilet to change back to my shirt and pants. It just felt damn weird with the catheter in. But I could walk better. I played with my phone. My mom in law and sis in law came. It was close to 6, and the Indian Einstein came, He gave another dose. Oh wait. he didn’t He pushed it in and then the nurse gave the rest. I winced and frowned while my eyes closed. I knew it was gonna hurt. My sis in law if all ok tak. I say yea. The Dr asked are you okay? I said just headache, maybe because you are pushing in too fast. N he said no, you shouldn’t feel that. I swear to God, I nak tumbuk dia punya muka. The fuck! I know medicine. It’s my fucking spine. I ain’t stupid. I just shut, and thought to myself, “Maybe this is what they do in Malaysia, ba. Thank god I didn’t fucking die in your hands”. I forgot about the issues and never filed a complain. Now to think of it. I should have! Yeap. So there it is. First invasive procedure for my back pain. Oh ya, I could walk again. The nurse removed the catheter at 10pm. I didn’t have radiating pain. All was normal. 

It’s been a little more than a month since I’ve been down with this back pain. As the weeks progress, it’s getting worse. It’s debilitating. I’ve always been a cheery, jovial person who always had something positive to say about something negative. To people gossiping about her to friend’s going behind her back to badmouth to her love. I’ve dealt with all that shit. And it’s always been say whatever you want to, you want to call me a bitch, a whore, whatever makes you happy, my friend. But now, it hurts me. It has begun to affect me. Whoever is talking about me. Fuck. I don’t even know who is bitching about me. It’s just that my friend isn’t calling me anymore. Entah la, I don’t know why I nak terasa.  I’ve been on painkillers the whole entire month. It’s been increased. They don’t help me anymore. Honestly, when I am sitting, I don’t have much pain. Maybe because I’ve got the hot pack on my back. I do my stretches (Butterfly, the clam, the bridging -well as the week past, i can’t even do that as well, reverse crunch) 

It sucks. Why? You have trained for 9months. Worked hard. Slacked off. Worked on them again, but yet, you get striked with this severe back pain. And now walking 10 steps can kill me. The pain. It used to start from the lower back, radiating down to the thigh, then it increased to the shin. Then I got hit with numbness over the right first toe. It came and went. Then it increased to half of my foot. my Physio knew about it. She realised that I had decreased strength there. And I was abit worried but I still ignored. I freaked out the day, it hit my the right side of my right lower leg.  The signs and symptoms he said to watch out for

-Numbness over the lower limb -Weakness over the lower limb -Incontinence of the bladder or bowel (that’s the sure sign that you needed to do open back surgery)

I went to see the spine surgeon and he said, what do you want to do? I’ve told you what you need but you told me you had priorities. So how? So a light bulb lit. How about an Epidural Steroid Injections? That would helped, wouldn’t it? I lied by telling that my uncle did it and it worked. But in actual fact, I did it in KL, I nearly fucking died while getting it done but yet I thought of doing it.

 I wanted to do it because: -Just started my degree, I kinda dragged my bff of 19yrs for it. -Had enough of my HL (took two months in Jan and Feb, and now Aug) -Had to start working on career. It had been put on hold for way too long. First i decided to try the Private Hospital. But I managed to pull some strings to come back and now, but I’m still on the low level. Probably I might have been upgraded by because of my HL, it couldn’t. They couldn’t assess my capability in preceptorship. 

So I got it done. The first ESI I did. I just agreed to doing it as the orthopedics surgeon in KL said to do it. If not, you are nowhere to getting back to your baseline. .... Next blog.