Archive for category Musings

Chinese New Year

First of all, Gong Xi Fa Chai to everyone! It’s a little late I know, but Chinese New Year lasts 15 days! I remember Chinese New Year last year. The first day was 3rd Feb, and I was just discharged after my first course of chemotherapy treatment. It was also the wife’s birthday. So it was doubly special. The wife and my mum went to Chinatown to get food for the steamboat dinner before I came home. the bought meats, fish, prawns and abalone!!! Spent a fortune but it was so good.

Chinese New Year this year is a little different with the baby, but like any other Chinese New Year, it’s all about the food. Thinking about all the Chinese New Year goodies just makes my mouth water. But sometimes, due to some freaky clash of the calendars, Chinese New Year will be at more or less the same time as Aidilfitri. And that is something to look forward to! I love Malay food! Unfortunately it’ll probably burn a hole in my mouth.

The time of year also reminds us how far we are from home. Having a baby just makes it worse. The wife and I felt a little sad that we’re spending so much time away from family. Especially after the last 4 months of so when my mum and auntie were here, seeing how they took care of and loved Sophie. Having more family around means more people will love Sophie and she’ll grow up knowing them and her cousins. Now she sees them over Skype and maybe, once a year if she’s lucky.

Hopefully this year will be the year we get our Australian PR application approved. Then we can head back to the upside down country and from there, it’s only a maximum 7-hr flight. We can head back more often, and they can come over more often too. Fingers crossed that it will happen. 🙂 

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Back to work

Well, it’s the new year and like the start to any new year, it’s time to head back to work. This was a year late, for obvious reasons, and for some reason, it felt good to jump on the tube and take the train into work again. The work schedule is fairly light to start off with; for the first week in January, I worked 2 days from home and 1 from the office. After that, it’s 2 days in and 2 days at home for 2 weeks, then 3 days from the office and 2 days from home after that. That arrange will probably continue for a while, then it’s 4 days in the office and 1 from home.

It’s been a good few months at home with the family and everything. But sometimes I do miss the interaction at work and the client work and discussions. There’s only so much interaction a baby can provide at this point and sometimes you just need that higher lever stimulation and interaction. Plus it will bring in some much needed income into the household coffers! 

I’ve only done one day in the office so far, and it’s been filled with meetings and ‘hellos’ and ‘how have you beens’ and so on. Then the questions shift to the baby. Everyone wants to know about the baby. 🙂 But that’s fine by me. Work’s pretty quiet, as expected for this time of the year. It’s the lull before the storm. The next couple of weeks will be busy as clients come back from the holidays and discover just how much work needs to be done. 

So the wife will have to take care of Sophie on her own for a few days a week since my Mum and Aunt are heading back in a few days. But it will only be for 2 days a week and we have some of the neighbours for help if she needs it. But Sophie has been a very good baby. She generally feeds well, and sleeps well during the night. The only thing is that she doesn’t take afternoon naps which makes it more difficult for the wife to get some of the chores done during the day.

So we’ll see how well I can cope with the rigours of work and travel, and baby over the next few weeks or so. I think I will be OK and the only thing now is to countdown to the 6-month mark and 200 day mark, then the 1 year mark while living as normal a life as possible.

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A tribute to my wife

Ever since I was diagnosed, there’s been one constant in my life. Someone who has weathered the storm and was like an almighty and immovable rock in the middle of the violent seas. Someone who was my lifeline and my anchor. Like the giant Atlas holding the world on his shoulders. Whose love and support was crucial for me to get through the toughest times. I am talking about my dearest wife, Vanessa.

She knew what was going on with me before I was officially diagnosed. She had obtained the full blood results from the doctors and had faxed it over to her brother (a doctor). She was strong for me, not wanting to worry me. She wanted me to have a few more days of peace while she suffered in silence. She was there to hold me when I collapsed outside the consultant’s office and dutifully took me to the dreaded D7 Ward every day for blood tests, and remained there with me at all times.

While I was getting depressed after the Hickman line insertion, she was there to encourage me and she was the one who suggested that I shouldn’t stay in the hospital gown and that I should change into my normal clothes. That helped me a lot. And when my family came from Malaysia, she took care of them and did her best to get them to adjust and make them comfortable. She drove them to and from the hospital every day, despite the fact that she was pregnant and had her own work to attend to.

When things settled into a rhythm and my mother stayed behind to help, she was holding up the sky on her own. She worked the usual crazy management consultant hours, drove to the hospital every day, paid all the bills and the rent on her own, looked after all the household responsibilities, all while getting more and more pregnant.

When I was admitted into a shared room in the D7 Ward to start my intensification course, she fought tooth and nail with the hospital administration to get me transferred to a single room. It worked. I was transferred to Weston Ward, and finally to Dacie Ward to complete the intensification course.

All this time as well, she would come with me to my clinic appointments. Although she was tired from the pregnancy and all the extra bits that she needed to do, she made it a point to keep in touch with what was happening to me and my treatment. This wasn’t just a meet and greet with the consultants. In most cases, it meant spending 3 hours waiting in the hospital. This while juggling her own paediatric appointments.

And it didn’t stop after Sophie was born. If anything, it got harder for her. She now had a little person to look after, and she had a sick husband to contend with. It was our first baby, so things were pretty tough for a while. My aunt and mother arrived to help, but she still had loads to do. Plus I had to be admitted to the hospital again for my transplant, so I wasn’t around to help her much. Despite all that, she would regularly bring Sophie to the park near the hospital so I can see her and interact with her.

After my discharge, I was out of action for a good few months due to the effects of the treatment and the conditioning regime. She picked up the slack and managed all the household responsibilities, with me and the baby in tow. Although I am better and am picking up more of the slack, she’s still doing loads and to be honest, any other person would have collapsed and given up a long time ago.

People tell me that I’m a strong person to have gone through all of that. But it’s nothing compared to what Vanessa had to go through. She doesn’t get enough credit or kudos as it is. So here’s my tribute to my wife, the strongest and most courageous person that I know. I pray for a better year ahead. I pray that I will be able to be what I was before and shoulder my share of the responsibilities.

I love you dear. For everything. I don’t think I’ve said “thank you” enough for what you’ve done over the past year. You’ve been brilliant. 

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The numbers game

I woke up this week thinking about numbers. Specifically statistics. I’ve been thinking about numbers since I met the transplant consultant, who told me that looking at the numbers as a whole, there’s a 25% mortality rate for a stem cell transplant. He was also quick to point out that this number included older people, and people with underlying health problems. While there’s no accurate or reliable data specifically for the people in my age group, he reckons that we do significantly better (another consultant said that the procedure had a 2 – 5% mortality rate for people in my age group). It’s a small chance, but a chance none the less. 

When I was first diagnosed, we spoke to some of the nurses in the ward about chemotherapy and transplants and what nots, and they said that Hammersmith Hospital (aka Funhouse) has a very good treatment and transplant centre. They have a very high success rate and have a very low incidence of GvHD and other complications. They DO happen, but the rates are much lower than they are at any other hospital in the UK.

Having been in and out of the hospital for the better part of the year, they are very good at what they do. So I am quite fortunate and very blessed to be able to get treatment in the hospital.

Still, the numbers are numbers and any competent person will be able to say that numbers are only part of the equation, and the patient plays a huge role in the outcome of the treatment. As a doctor told me when I was first admitted, medically, they do what they can. But in almost every instance, the patient’s will and spirit plays a huge role in the outcome.

That’s what I’m going on, the will and spirit to get past this blasted thing and beat it into submission. 

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Counting down the days

It’s 5 days till I have to report in to the Funhouse to start the conditioning treatment for my transplant. To say that I have mixed feelings is an understatement. Now I look forward to sleepless nights, a screaming baby, nappy changing, late night feeds and fumbles, more nappy changing, more formula making and baby poo.

At the Funhouse, it will be beeps, whooshes, yet more meds, more poison, more radiation, bloods and crappy food. Honestly I pick baby poo and sleepless nights any day of the week.

On the one hand I understand how important it is to go through with the transplant and how essential it is to get well. But on the other hand I abhor the fact that I have to be away from the wife and Sophie for at least 4 weeks. Not to mention the stress and worry that they will be under when I am undergoing the treatment.

Also not looking forward to the boredom and the fact that I have to be confined to the room for most of the treatment. I’ll be having treatments most of the day every day leading up to day zero. Depending on my bloods, they may let me go to the scrubs or to the restaurant or shops during that time. After the infusion, I will probably need to be in the room for most of the time. I can’t even head out to pantry to get a cup of coffee!

I am ‘stocking up’ on all the games, movies, tv shows and entertainment of any sort that I can get my cyber hands on to prepare for the 4 weeks of insane boredom in the hospital. The wife reckons that I should watch at least one comedy show a day (laughter being the best medicine and all that) so I’ve obtained the entire Black Adder series. That should last me a while. 🙂

Whatever it is, I just have one goal in mind. Getting out and getting better. Even then it’s going to be back for regular follow ups, but at least it will be the end of chemotherapy. And the follow ups will end. Eventually. So after that it’s all about spending quality time with my little family. And that’s something to look forward to. 🙂 

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Even more normal

It’s strange but ever since we’ve had the baby, I’ve never felt more normal. It’s like I’ve never had Leukemia. We’ve been so busy with the baby that I’ve forgotten all about having to go in on 1 Sept for the transplant. Good and bad I suppose, as it takes my mind off the procedure but it also means that I will be gutted to leave them for 4 – 6 weeks. Thinking about it just makes me really sad. But if it has to be done, it has to be done. It’s only for 4 – 6 weeks, and I will be back with them again. 

To make things worse, it’s not possible for Sophie and the wife to come to the hospital regularly to see me. Sophie cos she’s too young, and without a proper immune system, will catch all sorts of bugs in the hospital. The wife cos she has to look after the baby; although she will have more time when Sophie is older, and my mum gets here. 

It’s going to be rough; the consultant already said that it’s nothing like chemotherapy or the treatments I had before. He said I would feel terrible for a few days. But health and age does play a role so he’s confident that while it’s going to be rough, it won’t be anything I won’t be able to handle.

Well no matter how rough it gets or how difficult it will be, the important thing is that after all that, I will be well and I will be looking forward to spending a good many years with my little family. 🙂 And for that I’ll gladly suffer anything many many times. 

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We are taken care of

It’s quite funny how things have progressed to where they are now. I still remember the feeling we got when we were sitting in the Catherine Lewis centre on Christmas Eve 2010, feeling like our whole world has just collapsed. Now 8 months on, and we’re a lot more positive, not just because things are looking significantly more optimistic for the future, but also knowing at the back of our minds that we ARE taken care of.

I’ve previously written about how a string of seemingly unrelated events have taken us to this point. And now, thinking about things again, it ‘s quite uncanny how some things that have happened, actually happened in the first place.

Treatment

Being in the catchment of one of the best Haematology centres in London is a massive blessing. Having been put in a specialist transplant and Leukemia ward is a second blessing. Having such kind and caring nurses taking care of me throughout is another blessing. Having a consultant that takes the time to answer all our questions (believe me, we have plenty) in a non-British (read no candy coating, beating around the bush and going around the world) manner is another blessing.

And just as we were about to give up hope, we were told that I had a matching donor for a stem cell transplant! This is the best news any one could hope for! Plus the timings could not have worked out better for the baby. It’s awesome! 

Pregnancy

It’s been tough for the wife to go through pregnancy by herself when I was warded for the first few months of the year. But somehow, she was assigned to one-on-one care with one of the best and most experienced midwifes in London. She was one of the pioneers of the natural C-Section, and set up a foundation to promote the benefits of natural and pain-relief free childbirth. She even wrote a book!

Her consultant obstetrician is a specialist in fetal care and medicine, so is really an expert in complicated childbirths. Not that the wife had a complicated childbirth, but it felt safe that he was an expert in that field.

Baby

Really, what can I say about the baby, other than the fact that she’s brought so much joy and hope in a time of worry and darkness. Over the last 9 months or so she’s been the strongest of us all, having been through my condition since December 2010, all the dramas associated with it, all the wife’s pregnancy-related dramas, while constantly reassuring us that she was there with her kicks and turns. Sometimes the wife gets worried that the baby isn’t moving around much, and she gets a massive KICK as if saying, “I’m still here!”.

Both the wife and I get the feeling that, yes, although it has been a pretty full-on year, we have had plenty of help. We’ve had wonderful friends and family that have helped us without thinking or questioning. We’ve had extraordinarily good breaks leading up to this point. It’s as if all these things were put in our path to help us along this road. I believe it’s God telling us that nothing is going to break up this family unit that he’s created.

“God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.” (1 Corinthians, 10:13).

We’re not sure what the future holds or how we will cope once the little one is here, but one thing’s for sure, we are truly blessed. 🙂 And with God’s grace we will face the future together. 

Lilypie Pregnancy tickers

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