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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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A purpose?

It’s nearly been 2 years since my transplant. And things are going pretty well. We’ve sort of settled into the new place and are meeting new and lovely people. Sophie is walking, running, talking, and generally pushing every single boundary that can be pushed.

And yet I feel that there’s something missing. At the end of the day, I’d like to think that God gave me a second chance in life for a reason; other than to get on the property ladder, to make more money, to be there for Sophie and the wife. That’s all very important but what if there’s something else?

I was very lucky. I had something to cling on to; Sophie and my wife. My family offered me all the support that they could muster (although they were old and it was very very hard on them). I had fantastic doctors and nurses. But what of those who are less fortunate? Those whose families can’t see them every day? Or those who don’t have much to hope for or cling to?

I had wished before that if I or my experiences could make a difference to just one person, it would be absolutely fantastic. I had a ‘vision’ of me, standing in front of an audience, speaking about my experiences. It wasn’t anything fancy, just me talking about what I’ve been through, and how faith and hope helped me through the most difficult times. I like to think that it’s a sign for me to get my butt in gear, to help, in my own small way, people who are experiencing the same things that I was.

Unlike many, I actually DO know what they are talking about. I can share my limited experience  but I can share how I hoped and dreamt and how I had faith. If that makes a difference to just one person, it’s enough.

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Mega mega update

Wow. Still here. And coated with a thick layer of virtual dust too. Well, might as well continue updating this site for what it’s worth. 

One year

It’s been more than a year since my transplant. Honestly the day came and went with little drama. But that’s what we wanted. But things aren’t always smooth sailing. I picked up a persistent eye infection sometime at the end of August. I started seeing floaters, the vision was blurry and my eyes were very sensitive to light.

After trying to deny the existence of the floaters (which is pretty difficult when they occupy half of your vision) I made the trek to Moorfields Eye Hospital and was immediately scanned, prodded, looked at and diagnosed. Apparently I have CMV retinitis and it can cause blindness. Luckily for me, the consultant assigned to me has a special interest in retinitis in immunocompromised patients. Unluckily for me, he’s had 10,000 people look into my eye.

Long story short, he thinks that my previous CMV reactivation affected my eyes as well. But since no one looked into my eyes, no one knew. It left some scarring and possibly some remnants of the CMV virus in the eye. So now that my body has recovered to a point where it can fight off the virus and heal the scarring, it’s doing that and the result of which is the floaters and blurred vision.

He then got really excited, since it’s the first time he’s seen something like this, and he can’t recall ever reading about anything like this. So it’s a unique case. Hurray. So I’m given valganciclovir for the CMV and treated like a lab rat. Anyways, a few weeks after that I had a massive eye infection. Valgan murders the my bloodcount so it’s possible that I couldn’t fight off what was a very mild infection. But a dose of Augmentin (co-amoxiclav) sorted that out. But I did look pretty scary for a while.

Work

I was laid off work in July. So I’m freelancing now, which is good, as I make more money, but not so good as I get paid by the day, I don’t get paid when I’m in the hospital for clinic and treatments. But the work’s interesting and good, so far. But I’m looking for permanent work to cater for my days in the clinic and (touch wood) if I’m hospitalised again.

So far it’s been slow going. Naturally the high up you go in the food chain, the less jobs there are. It’s just the nature of the beast. But in the meantime, I’ll plough on working as a freelancer and make as much as I can before taking the next plunge into the world of the permanently employed.

Sophie

Sophie is 14 months old now. She’s such a joy to be around. She’s speaking (baby speak), calling Mama and Dada, and she’s starting to walk! She can manage to walk a fair distance on her own (albeit a little unsteady). SO many things have happened since I last updated.

We celebrated her first birthday, then had to bring her to the A&E at St Mary’s as she had a 40-degree fever. Scary times. Even scarier was the attempt to put a cannula into her arm! Stronger men have cried harder when their baby cries in pain. Not something I want to hear even again. Luckily for us the fever passed after a day and she’s back to her usual bubbly self.

The wife has also gone back to work (after 14 months), albeit for 4 days a week. Needless to say, she misses Sophie a lot. We leave her with a nanny, one we found after months of searching. Luckily for us, she loves her nanny and the nanny seem to dote on her too. 

Norbury

We moved to my brother’s place in Norbury, which is just outside Croydon in South London. Croydon was also one of the worst hit areas during the London riots last summer. There’s not really much to say about Norbury other than the fact that it’s very different to Notting Hill. The population there is very ‘working class’, not that there’s anything wrong with that, but it’s very different to what we’re used to.

In West London, carrying a laptop bag to work is like part of your uniform. But in Norbury, it’s a tool box. Sophie’s Bugaboo looks very out of place here. The main problem with Norbury is that there’s no where to go during weekends. The wife and I end up driving back to West London on weekends just for brunch or to get to a playground for Sophie. And it’s an hour each way so we end up spending a lot of time in the car. Not ideal for an active, restless 14-month old.

The good thing is we do save a lot of money. And that I think, will keep us going for a while. 

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All things bad and good

It’s been a really long time since I last updated this blog. It was in February. I’ve even had to check my blog for that! Lots and lots have been happening since February. Some good and some bad.

Recovery

This is a bit of a hit and miss. I’ve been fighting a persistent cold (Rhino virus) since December 2011. And it’s just going away. Also, since the CMV virus has reactivated in my body, I’ve been on Valganciclovir and it’s proving to be murder on my blood count. I’ve found myself neutropenic many many times, and needing GCSF jabs almost daily to keep my blood counts up.

I’ve also been warded 2 times in the last 4 weeks for infection, the last one a chest infection that took over nearly 1/2 of my left lung!! Not very nice. Thankfully it’s all clear now and even the cold seems to be retreating a little. 

Family

Sophie’s just turned 9 months old. She’s crawling and learning to walk (every parent’s nightmare). She’s also really curious and very very observant. We’re taking a long deserved holiday back to Asia to see the rest of the family in a few days and everyone’s really looking forward to meeting her.

The wife’s hanging in there, pushing herself to the limits everyday to make sure that Sophie gets the best that she can get. So a typical day in the life of the wife is:

07:00 – Wake up and breast feed Sophie

09:00 – Wake up and take over breakfast feeding duties from me

10:00 – Dress Sophie and take her to playgroup

11:30 – Lunchtime (Sophie’s)

12:30 – The wife inhales her lunch if she’s lucky.

14:30 – Monkey Music or a walk in the park, if the weather is good.

15:00 – Breastfeed Sophie

16:00 – Back home and Mummy play time with Sophie

17:30 – Dinner time (Sophie’s)

18:15 – Sophie’s bath time

20:00 – Dinner (ours)

23:00 – Bed time

A pretty packed day with plenty of stimulation and activities for the little one, which I’m sure is one of the reasons why she’s so observant and curious. But then the wife is exhausted by the end of the day. 

Work

Work’s been a bit of a disaster to be honest. While they’ve been very good to me while I was undergoing treatment, now that I am back full time (albeit 3 days in the office and 2 days from home), I still can’t commit the time and energy that I want to due to the fact that I can only travel off peak and need to take time off for clinic visits.

So they can’t assign big, juicy projects to me; the very thing I was hired to do. It’s immensely frustrating to see projects like these assigned to someone else.

It’s also been a long hard slog since I’ve been diagnosed (in more ways than one), and the wife and I have been really looking forward to this break for a very very very long time. So while everyone fawns over the little one, we’re going to have a good, nice, long break. 🙂 

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Then and now

It’s just over 4 months since I was discharged from the hospital following the Stem Cell Transplant (SCT). And to be honest, it’s been pretty good so far. I’ve been feeling much better and stronger since then, and I have more energy and can do more things without feeling as tired as quickly. Which also got me thinking about things have progressed since I was discharged.

Then, on 29th Sept 2011 and now, on 31 Jan 2012.

What Then Now
Energy levels Quarter tank. Sometimes less. I nap frequently. Nearly a full tank. I don’t nap during the day. 
Appetite So so Like a horse.
Walking Not good. Legs ache after 10 minutes. Much better. I can walk for 30 – 45 minutes.
Running Er.. me? Run? I do run. Across the road, to catch a bus or for the tube.
General alertness Randomly staring into nothingness. Less random staring in nothingness.
Random fatigue Frequent. Rare.
Working Nope.  5 days a week now. 
Stairs 3 maybe 4 are OK.  Queensway tube. 123 steps straight up. I did that. Office lift broken. Walked up to the 7th floor. Twice! 
Crowded places Er.. not keen. Took the tube, queued for a table for yum char. Not too bad but always wary of sick people.
Diet restrictions Lots and lots. Much less. Only raw meats and fish apparently.

Things have improved. And although I was sidelined with the CMV infection and now am STILL fighting (but slowly getting better) the Rhinovirus, it’s been a positive 4 months. The annoyance is that I need to report to the clinic once a week cos of my viral infections and that my Haemoglobins are low. Apparently the valganciclovir (for the CMV virus) messes up the bone marrow, hence the subsequent fall in Neutrophils, Platelets and now Haemoglobins. They are the last to fall and will take the longest to recover. I hope I don’t need a transfusion. That 2 hours for 1 unit and I will usually need 2 units.

But I can’t complain. There’ve been some bumps, but overall a good 4 months. 🙂 

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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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Work week 2

Work week 2 has just passed and I’d be lying if I said that I wasn’t knackered at the end of it. I was working 2 days from home (Mondays and Thursdays) and 2 days in the office (Tuesdays and Wednesdays). I went into the office on Thursday last week as I had an important meeting to attend, and also to sort out the project work that I was going to do for the coming weeks.

So a normal work in the office day starts like this:

6:45 – Wakey wakey. Not by choice, but it’s time for Sophie’s 7am feed. The wife feeds Sophie while I cat-nap.

7:30 – Sophie goes back to bed, where she ‘ppffftttsss’ for a few minutes before falling asleep. I make breakfast and have a coffee.

8:30 – The wife gets up, Sophie is usually up and I get ready for work.

9:15 – I leave for work.

17:00 – I usually get home by this time and spend the next 45 minutes or so spending time with Sophie and the wife.

18:00 – We give Sophie a bath.

18:45 – The wife takes a shower while I prep Sophie for bed.

19:00 – I take a shower while the wife feeds Sophie. I cook after the shower. The wife usually does some of cutting during the day so that saves a lot of time. 

19:45 – Dinner. And some time to ourselves. If Sophie doesn’t cry.

23:00 – Sophie’s night feed. I usually take this as the wife is knackered from looking after the little pocket dynamo for the whole day.

0:00 – Bedtime. We’re usually asleep before our heads touch the pillow.

And the day starts over again. Honestly, the first day was pretty OK. I came back from work, still energetic and raring to go. The second day was a little harder, and by the third day I was ready to fall asleep on the train. But it was an exception as I wasn’t supposed to be at work.

The first few weeks are naturally going to be tougher as we’re still adjusting to life without 2 extra pairs of hands, and I’m still adjusting to working again after months of inactivity (plus the baby). It’s going to be interesting once I go back to work for 5 days, 3 in the office and 2 at home. Eventually I hope to spend 4 days in the office and 1 at home, but I reckon that’s going to be a long way off yet. One thing at a time I suppose, so for now we’ve got to get into a routine that includes me at work. 

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