Archive for December, 2011

Hopes for the New Year

2011 is about to close and 2012 is about to begin. At least in the Gregorian calendar. In the Chinese calendar the New Year won’t start until the end of January. But that’s a different story. Anyway, I for one, will be glad to see the tail of 2011 and welcome a (hopefully) better 2012.

Everyone has their own hopes and dreams when the New Year comes, and at the start of 2011, I was just starting my treatment for ALL. There was only one thing on my mind at the time, and it was to live. Now that the year has gone, I think it’s time to harbour some hope for what the New Year may bring.

Recovery

I hope to recover and recover well in 2012. This means less hospital visits, less medication, less of the Funhouse, less of everything ALL related. This also means more time and energy to dedicate to work and family. Something that I have neglected for most of 2011 because of the treatment and its effects. So hopefully 2012, also the year of the 1-year anniversary of the SCT, will bring about smooth recovery.

Volunteer

Effectively, I have been given a second chance in life. Not everyone gets the chance. So I’d like to think that I was given this chance for a reason. Therefore in 2012, health permitting, I’ll start volunteering to give back the goodwill and grace I received. I’m not too sure what at this point; could be more active in church or volunteer for some Leukemia trust, but I’ll definitely do something worthwhile other than work.

Home

Alas, 2012 will also be the year we bid adieu to our central London flat and move into a flat in London’s South West (thanks to my very generous brother). While the central London flat is very convenient, for literally everything (walk to Selfridges or Harrods anyone?), it’s also a massive strain on our resources. The other flat will be significantly cheaper and will enable us to save more and hopefully, buy a little home of our own. 

Sophie

Yes, Sophie. Without her, the year would have been a complete disaster. The last 4 months have been a complete revelation. I could never understand how people can tell me that they can never be angry with their child for long. Well, now I know. She will turn 1 in 2012, and even now, at 4 months and a bit, she’s starting to develop at a phenomenal rate. We’re also taking her back to Asia to see the rest of the family. That will be quite an adventure. For 2012, I wish for continual good health and yet more phenomenal development for our precious little treasure.

Family

All I ever wanted was a small, happy family. And now I have one. A loving wife and a beautiful daughter. In the New Year I hope for continual love, peace and joy for my family. Love and peace for my ever loving and supportive wife. May she always enjoy good health and prosperity. 🙂 

Joy and peace

Joy and peace be bestowed onto all in the New Year. 🙂 

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1 year

Timeline

24 Dec 2010 – Diagnosed with Acute Lymphoblastic Leukemia (ALL)

29 Dec 2010 – Admitted into the Sainsbury wing at Hammersmith Hospital, London to begin treatment for ALL

29 Dec 2010 – Hickman line inserted

31 Dec 2010 – Transferred to Dacie Ward 

01 Jan 2011 – Course 1 (Induction – Phase 1) of UK ALL XII begins

29 Jan 2011 – Course 1 (Induction – Phase 1) of UK ALL XII ends

03 Feb 2011 – Officially discharged from the hospital (also the wife’s birthday, also the 1st day of Chinese New Year)

25 Feb 2011 – Admitted into Dacie Ward to begin Course 2 (Induction – Phase 2) of UK ALL XII

01 Mar 2011 – Course 2 (Induction – Phase 2) of UK ALL XII begins

29 Mar 2011 – Course 2 (Induction – Phase 2) of UK ALL XII ends

04 Apr 2011 – Officially discharged from the hospital

26 Apr 2011 – Admitted to Ward D7 to being Course 3 (Intensification) of UK ALL XII

28 Apr 2011 – Course 3 (Intensification) of UK ALL XII begins

30 Apr 2011 – Transferred to Weston Ward

22 May 2011 – Course 3 (Intensification) of UK ALL XII ends

28 May 2011 – A donor has been located!

01 Jul 2011 – Course 4 (Consolidation – modified) of UK ALL XII begins.

28 Jul 2011 – Course 4 (Consolidation – modified) of UK ALL XII ends.

08 Aug 2011 – Sophie Colette Wong joins our little family!

02 Sept 2011 – Admitted to Dacie Ward to begin the conditioning for the stem cell transplant

09 Sept 2011 – Stem Cell infusion begins

30 Sept 2011 – Officially discharged from the hospital post transplant

09 Oct 2011 – Day +30 post transplant

29 Oct 2011 – Day +50 post transplant

18 Dec 2011 – Day + 100 post transplant

09 Mar 2012 – 6 months post transplant

17 Mar 2012 – Day +200 post transplant

08 Aug 2012 – Sophie’s one year birthday 🙂

09 Sept 2012 – 12 months post transplant

Looking forward to those dates in 2012. 🙂

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Day +101

That’s right. I’ve passed yet another milestone in my battle with the Funhouse Fever. It’s day +101 today. Apparently it’s a very big deal to pass the day +100 mark. I wish I can say it’s been uneventful, but no such luck. So far I’ve had a mild infection of the upper respiratory tract (no hospitalisation, thank goodness), a mild case of the GvHD (again, no hospitalisation required) and a reactivation of the CMV virus (alas, hospitalised).

While it’s not been as smooth as I would have liked, it’s not been rough as well. I spent most of my time at home and out and about when I can manage it. I worked from home (and enjoyed it too) and have been generally healthy and fine. I generally feel a lot better now than I did a month ago. I have more energy, my appetite is returning and I can walk for a lot longer without feeling out of breath. On a less positive note, I still feel cold most of the time. This makes taking a shower in winter a very unpleasant experience. Doesn’t help that the shower apparatus in the flat is a little temperamental.

To celebrate my 100th day post transplant, the family and I decided to have lunch at Singapore Gardens, a restaurant in the very chic St Johns Wood. But before that, we took a drive south west to Croydon. We are going to move to a nearby area in the new year, so it made sense to check it out before we moved. Overall it was a nice day out, besides a nappy disaster from Sophie which sparked a frantic hunt for a pair of baby tights in the stores.

We then drove to the restaurant (which was in the north west of London) and spent almost 1.5 hours in the car due to traffic. Luckily they kept the table for us and we had a very enjoyable meal. We started lunch very late so we had a very simple dinner, with a bottle of sparkling apple and ligonberry juice from Ikea. It was delicious by the way! 

So far so good I say, and although the first 100 days felt like an eternity, it’s a nice feeling now that it’s come and gone. The next milestone to look forward to will be day +200 and then 1 year post transplant. For now, I am looking really looking forward to an uneventful Christmas at home with the family. 🙂 It will be Sophie’s first and we have champagne and a roast planned, so it will be good. All I wish now is for an uneventful 99 days and an even more uneventful 265 days to the 1 year mark. 

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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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The NHS really sucks sometimes

One of my pet peeves is waiting for absolutely nothing at all. It’s a complete waste of time and shows a sheer and utter disregard for someone else’s time.

Basically I’ve been cleared to go home by the Haematology doctors. The levels of the CMV virus in my bloods have stabilised and are at a level where they’re comfortable with. But my blood results over the last 2 weeks have shown that my sodium levels are falling. Not alarmingly falling, but falling nonetheless. They’ve sent my blood and urine for analysis, and the results came back that I have SIADH. Basically something is making me pee too much and I am losing too much sodium that way.

So the doctors from the endocrine department want to see me before I leave the hospital to get to the bottom of this, and to deal with it. That’s the problem. It’s now 16:51 on Wednesday 7th Dec 2011. I’ve been waiting since 9:00 this morning. They’ve stopped my Ganciclovir infusion, and have given me pills instead. So technically, I can go and am discharged. Except for the fact that these blasted doctors from this department can’t seem to keep their appointments, and I have to stay in another day!

What a waste of time! I could have wrapped gifts, bought Christmas decorations, ran a lot of errands, got more work done; instead I am stuck here at the pleasure of these irresponsible doctors. It’s not like the nurses and doctors here haven’t tried to call them. They’ve called and paged them multiple times, but they just don’t bother to answer their pages. At least have to courtesy to pick up the phone and call if they’re busy. And if they can’t make it today, at least inform the patient so they can get on with their lives.

I hate the NHS sometimes. Some of them really think that they’re God’s gift to medicine. 

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Still here

I am still at the Funhouse, and still getting my twice a day drip of the anti viral drug Ganciclovir. It’s not all that bad though, as they let me go home between drips, so usually the first drip ends at about noon, and the 2nd drip starts at about 9pm so I am allowed to go home in between. I get to spend more time with the baby and all that, especially now that she’s squealing and laughing and trying to turn. Not a moment I want to miss.

Bad news is that they’ve had to give me a new canula, as the old one was getting a bit blocked. Canulas are only supposed to be in a patient for about 3 days, and mine was in for 5 so it was time they changed it.


They put it on my hand this time, not the best of places as Sophie is starting to grab things and this is something that she will try to grab. Not very nice if she pulls it out. Blood everywhere!

They also don’t take blood from the canula, and they also have to check my CMV levels everyday so they have to stick a needle into my arm every morning to take blood. I do have pretty decent veins but taking blood every day isn’t something the body deals with very well.



It’s day 6 now, and it’s also the 5th day of the anti-viral course. Hopefully the CMV levels will come down enough for them to send me home with a course of oral drugs instead. I can’t imagine being cooped up here for much longer.

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