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Austerity

I was reading the news a few days ago, and besides struggling to find news articles devoid of the terms bungling, incompetent, shambles and misconduct, the one thing that struck me (and have in previous years), was the use of the word ‘austerity’.

It’s become the latest buzzword for the papers and politicians to use. Like dot-com, sub-prime mortgage, double dip and financial chaos. In reality, it means cuts. Cuts to the budget, welfare, NHS, defence; you name it, it will be cut. With the exception of politicians’ salaries and benefits, and of course the breaks given to the super rich of society.

But I digress. In light of the austerity drive, the wife and I decided to adopt a more ‘frugal’ way of living. The ‘theory’ of living this way goes like this:

  • We can’t buy anything new, unless it’s absolutely necessary (for the definition of absolutely necessary, see below).
  • We can’t buy anything to replace something, unless it’s beyond repair.
  • No unnecessary outings or holidays, unless it’s to spend time as a family.

Something is deemed to be absolutely necessary if we’d die without it, e.g. food and shelter, and even then, it’s only to buy things that we absolutely need, i.e. no champagne or truffles. Or if it’s essential for safety, e.g. if the car’s brakes need changing. Or if something broke and we can’t get it fixed, (e.g. if a jumper was holed beyond repair). Or if Sophie grows out of her clothes, and there are no hand me downs.

The idea was actually suggested by an American family, who realised that they were spending more and more time in shopping malls chasing the latest fashion trends and/or the latest gadgets, and spending more and more money, and spending less and less time as a family.

So they came up with the idea of not buying anything that they didn’t need. Clothes, gadgets, indulgences were all out. They learnt to sew, darn holes in their clothes, fix broken stuff, spend quiet time together; all unheard of in this increasingly temporary lifestyle.

What they found was, besides saving more, they’re spending more time together as a family. Weekends were spent as a family either at home or in other enriching activities. Their children would find very creative ways to make use of old stuff, for example their teenage (yes, you read that right!) daughter converted one of her grandmother’s skirts into a miniskirt instead of going out and buying one.

They tried that for a year and after the year was up, they decided that they liked their ‘new’ way of life and continued living that way.

Can we do it? Well, we’re trying to. The wife is mending holes in her jumper and I have holey socks. We haven’t bought something new for ourselves for many moons. Are we worse off? Nope. I admit that we we’re as disciplined as the American family. We do go out for meals and we do indulge in some treats sometimes but we’re trying. Hopefully it will bring us closer as a family. 🙂

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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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It’s been quite a week

Some may call it eventful, others may call it unfortunate while some others may call it terrible. But one thing’s for sure, the last week has been quite an eventful week for me.

It started off positively enough. The doctors at the ward gave me the green light to go home (i.e. be discharged) as the CMV levels in my blood had fallen from 1800+ to just over 400. I could be on the oral valganciclovir which renders the need for me to be in the hospital redundant. But as my sodium levels were lower than normal, I had to see an endocrine specialist to figure out what was causing the low sodium levels.

And so I waited, and waited. They said they were coming on Wednesday, but never turned up. Feeling rather disgruntled I came back early Thursday morning for my blood workup and yet more waiting for the doctor. She finally showed up on Thursday afternoon, read my notes, saw me for a grand total of 3 minutes, mumbled something about Cyclosporin potentially causing the low sodium levels, left again and never came back. Huh? Anyway, she left it to the ever reliable haematology doctors to explain what was happening. Basically I need to restrict my fluid intake to 1 litre a day (which isn’t much) and they changed one of my meds (Lansoprasole) to Renitidine. They do the same thing, but Lansoprasole has been known to reduce sodium levels in patients. And I had to come back early Friday morning (again) for a very specific blood test. All that waiting for 3 minutes with a doctor.

To make matters worse, someone stole my wallet while I was in the shower! That’s right. Someone brazenly walked into my room while I was in the shower, looked into the cupboard, and took my wallet. This happened on Wednesday night. Talk about a week that just got worse. After I found out that it was missing (silly me, I only found out an hour later), I reported it to security and frantically called to cancel all my cards. I have to replace my Boots card (had nearly £10 in there), my prescription exemption card (not worth anything to anyone) and my drivers licence (bad bad bad). What’s the ultimate, is that the wallet this beast took was a gift from the wife! I was contemplating cursing this person to the high heavens but then, it does take a special someone to steal from a cancer patient. And I believe karma is a super bitch. She bites hard.

Believe it or not, that wasn’t the worse thing to happen that week. When I came back on Friday for my blood test, I was told that the CMV levels in my blood had gone back up to over 1000. So they can’t let me go home. This made me feel significantly worse than anything over the last few days could have, as it could potentially mean another Christmas in the hospital. Which I would rather die than do. Feeling rather miserable I went back home to pack (I had taken everything home before) and reported back to the hospital on Friday evening.

After discussing matters with the team of consultants, they decided that they would be OK to get me discharged and send me home over the weekend and be on the oral Valganciclovir. But I had to report back to clinic on Monday for more bloods and if the CMV levels continued to rise, I would have to be readmitted. If it stabilised or if it dropped, I would be OK to continue on the oral tablets.

So it’s been a week that I wouldn’t want to re-live again. But what I want is to not be in the hospital but be home for Christmas. It’s Sophie’s first Christmas and it will kill me to miss it. 

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Card

I got quite a nice surprise when I went in for my weekly checkup at the Funhouse today. My donor sent me a card. Which was very very nice of him. We don’t know much about him, except that he’s in his 40s and lives in Taiwan. But now we know that he’s likely to be a Buddhist and the card came from a Buddhist Bone Marrow Centre somewhere in Taiwan.



Basically the message in the card says that it’s his calling to save people with his marrow. Well, the wife suggested that I put the whole message in Mandarin up here, so here goes. Hope it works.

受 髓者您好

“助人為快樂之本”。捐髓救人,是我的使命,也許是您我前生結來的好緣,希望這次的捐贈,能給您帶來健康,全家和樂,並祈望日後也能做一個助人的人。

一切順利,健康平安

For those of us (myself included) who can’t read Mandarin, there’s always google translate. It’s a bit weird, and doesn’t actually mean what it translates to. It’s like trying to read an instruction manual written originally in Japanese but very badly translated into English. 

Anyway, since I’ve received the stem cells, I’ve been craving less meat and wanting more vegetables. It seems unlikely that the stem cells caused this, but if in some weird way it does, we know why. If he’s a Buddhist, it’s likely that he’s a vegetarian. 😀

Anyway I like vege. No complaints there. But it’s a nice gesture and we’re going to send him a card too. There can’t be any identifying information on there, so it has to be anonymous but it’s OK. We just want to convey our gratitude cos without his selflessness, I won’t have such a good second chance in life. 🙂 


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Spicy

I like spicy food. Growing up in South East Asia, almost every meal came with a liberal sprinkling of fresh, pickled or dried chilli. While my tolerance of all things spicy was never every that high, I was reasonably OK with moderate to high levels of chilli heat. I’m not sure when it started, but I realised that my tolerance of chilli dropped dramatically some time when the wife and I were living in Australia. I realised that my scalp and face started perspiring heavily if the meal had chilli in it. There wasn’t even that much spicy food there, and even the traditional Malaysian and Singaporean dishes there were relatively watered down by comparison. But still, I had the sweats every time I ate something with chilli in it. When I went back to Singapore and Malaysia, well, combined with the heat, it was drenching.

I reckoned the chemicals in the chilli caused the sweats rather than the actual heat of the chilli. I could get the sweats with sweet chilli sauce. And that’s nothing. Things are slightly different now. While my tolerance for chilli heat remained unchanged over the years since I’ve moved to London, it has changed dramatically after I had the conditioning treatment for the transplant.

Now, I can’t take ANY chilli at all. Not a single bit. A single shard of Jalapeño in a mouthful of guacamole is enough to set my mouth on fire and for my scalp to think it’s Niagara Falls. Again, I don’t think it’s the actual heat of the chilli causing the reaction, but the fact that the layer of mucous protecting my mouth from the chemicals in chilli has been eroded by the chemo and radio therapy. So when I eat something with chilli, I get the full smackdown. It’s like rubbing chilli into your eyes. Not very nice.

This is a culinary disaster for me. Most of my favourite foods have chilli in them in one way or another. And I seriously can’t imagine spending the rest of my life not eating my favourite foods. So do I just bite the bullet and take spicy food in the hope that my tolerance for them goes back to what it was? Or do I just live with not eating spicy food? Decisions decisions. 

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Feeling thankful

Over the last few weeks, I have watched part of the Korean and Indian Formula 1 Grand Prix, many Rugby World Cup matches including the finals where the All Blacks scraped past the French, and I feel thankful. Thankful to be alive, thankful to have had a successful transplant, thankful to be home and relatively well.

I’ve been reading the accounts of several other ALL patients and survivors, and the horror stories about their experiences and symptoms, not to mention the delay in diagnosis and getting them admitted and treatment started. Some of them have been given the run around by different doctors and have had to wait weeks before being allowed to take a blood test. By that time, the Leukemia had spread to their organs and had become a much more serious condition.

It made me think about the time when the doctors here diagnosed my condition and how they moved to get me warded and treatment started. I was very very lucky. It took them all of 11 days from diagnosis to starting treatment. I’ve read about a little boy in the States whose parents were given the run around for months before one doctor consented to do a blood test, and subsequently discovered that he had ALL. By that time, it had spread to his organs and he needed intensive radiotherapy to kill off the cells in his organs. He’s fine now (thankfully), treatment has stopped and his Hickman line has been removed as well. 

So yes, I am feeling thankful to be alive, and although things could be better, it could be a lot worse.

I am also thankful for Sophie. It’s been very tiring for sure, and the wife and I really don’t have any time to ourselves at all now. But every time we see her smile, it makes it all worthwhile. We were talking the other day and Sophie nearly didn’t happen. If we had put off trying for a baby for just one month, we wouldn’t have had her. The credit goes fully to Hyde Park’s Winter Wonderland and copious amounts of mulled wine and mulled cider.

Anyway, it’s nearly Christmas and the only thing I wish for is a happier Christmas than the one we had last year. 🙂 

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Skin

The one annoying thing about having the GvHD rash is the effect it has on the affected area. The skin becomes lumpy, thick and hard, and it itches like mad. When it goes away, the skin transform into something like a shell; and it starts to flake away when the new skin underneath starts to grow.

This isn’t that bad on the hands or arms, cos it’s sort of manageable. But when it’s on the foot or more specifically, on the soles of the feet, it starts getting REALLY annoying. Imagine getting itchy feet, all hours of the day. Can’t really scratch it, especially when you’re wearing shoes.

The worse bit happens when it starts drying up and the skin becomes tight and flaky. It makes it very difficult to move your toes. And when the skin starts flaking off, well, then it becomes REALLY disgusting. Like it happened to me! So when it happened, I took some picture of it. It IS really disgusting.


Told you so. At least that’s the last of it. Now for the new skin to take over. 

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