It’s 5 months now since my transplant. I know that cos Sophie’s 6 months old and my immune system is 1 month younger than her. It seems like an eternity to be honest and I can’t wait for the all clear from the doctors. The bad news is that I may have a chronic version of GvHD. I’m starting to get small, brown lumps all over my body.
The consultant reckons that it MIGHT be GvHD, or it could be an effect of the medication and/or radiation on my skin. If it is GvHD, there’s no effective treatment for it. It’s also very itchy, but that’s because it causes the skin to be very very dry, made worse by the very cold weather that we’re currently having in Europe.
His remedy? Moisturise and moisturise very very often. Apply the steroids to the hands and feet, and call them if it gets worse. He did say that he couldn’t tell that my skin had the little lumps. It was only something myself or the wife would know since we’re more familiar with my skin. So as far as he’s concerned, it’s a small problem. He also did mention that the Leukemia almost never comes back when patients have GvHD 100 days after transplant.
I take it as a good sign, but I don’t really want dry flaky skin all my life. But considering the alternative, it’s probably a very good deal.
On a separate note, I’ve added a twitter feed into the blog. I’ve not had much time to update the blog with the baby and work and stuff, so twitter seems like a good way to keep updated on things, albeit in a much briefer way. If you’re on Twitter, you can follow me @funhousediary. 🙂
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.
|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.|
|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. 🙂
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. 🙂
Day +134 has come and gone. Nothing much to report (thankfully) except that I still attend my clinics weekly (annoyingly)as the consultant is still worried about the ‘minute levels of the CMV virus’ in my blood. That and the fact that the Valganciclovir that I am taking for the CMV infection has decreased my Neutrophils, Platelet and Haemoglobin levels.
So far, it’s been good. I’ve caught a bug though (Rhinovirus) and it’s giving me a cough, sore throat and a runny nose. It’s one of a possible 103 variants of the Rhinovirus, and there’s no effective treatment for it. It’s otherwise known as the common cold. I’d rather catch the common cold than one of the 7 nasty viruses that they don’t have a treatment for and is dangerous and that I would have to be hospitalised! That would be tragic.
My meds have also been reduced. I’m taking the Valganciclovir once a day now (not twice), they’ve removed the Lamivudine (for Hepatitis) and they’ve reduced my Cyclosporin dose to 75mg twice a day (from 100mg). Now the thing to look out for would be the return of GvHD, which sometimes follow on from a reduction of the immunosuppressants. But I still apply my steroid cream once a day on my hands and feet, so hopefully I will be able to nip it in the bud this time.
It’s been a very busy week at work and at home. I’ve just delivered my first project in nearly a year. It’s a small, simple one, but it was good to do it. At least the brain cells are still functioning. It’s also the week Sophie’s getting baptised. So we’ve invited some friends over to the church for the ceremony and to the pub for a few drinks and some cake (a proper one this time). And to top it all off, it’s Chinese New Year! Year of the water Dragon apparently, and one supposedly full of turmoil and conflict. But we take the year as it comes. 🙂 It’s also the first time we have to give red packets. And the first person we’re giving it to would be, you guessed it, our little Sophie.
Speaking of my Mum and Auntie, it’s been 2 weeks since they left. And we’re slowly adjusting to the routine of work (mine) and home with Sophie in the picture. Trying to balance work, looking after a little pocket rocket, chores, cooking, cleaning, etc is no mean feat. So we decided to get a cleaner in every fortnight to help us with the cleaning. So that should help somewhat.
Anyway, here’s to more good health and good fortune in the year of the Water Dragon. As an Ox, I am stubborn and resilient. 🙂 So come what may, I will prevail.
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.
It’s finally time I guess. They can’t stay forever. It’s fantastic that they’ve been here since late August, helping out with the chores, with Sophie, offering the wife support, offering me support when I was in the hospital. They’ve endured a torrid Autumn and a (thankfully) mild Winter here. Overall, it’s been a good 5 months.
Yes, my mum and auntie left for the warm shores of Malaysia on 9th January. To say that our tiny flat is now much quieter is an understatement. While they helped the wife and I (especially the wife) out a lot, they were there for her emotionally as well. The wife definitely felt the void when they left.
But the one person who missed them the most was Sophie. She was only 3 weeks old when they came. She was quite a handful then, crying almost non-stop every day. But they adored Sophie and doted on her. Sophie adored them too and when they left, the poor girl was looking for her Mama (grandma) and Guma (grand auntie). She cried inconsolably for nearly 90 minutes the afternoon they left. Babies are habitual, and she’s gotten so used to falling asleep on Guma’s shoulder in the afternoon that no one else would do. We finally managed to calm her down by sitting her in front of the TV and getting her to watch ‘Deal or No Deal’, a game show that my mum and aunt used to watch in the afternoon. She was OK after that (thankfully).
It’s going to be harder and more tiring for the wife and I to look after Sophie now that we’re short of 2 pairs of hands, especially now that I’m going back to work a few days a week. But as parents, we have to do it. We managed it before they came, and we sure can manage it now. Plus she’s a lot easier to look after now.
Anyway, like I said before, they can’t stay forever. We were very fortunate that they’ve stayed for so long and helped out so much. For now, we just have to get back into the routine that we had before. 🙂 It’ll be good.
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.