Archive for October, 2011
After the visit to the doctors on Friday, the wife and I decided to live a little and took everyone out for Sunday brunch at a popular, local (well, a 15-minute drive away) cafe. Brunch was always something we enjoyed doing before the dung hit the fan and we would usually head out either to Daylesford Organics or Cafe 202 in Notting Hill for a weekend brunch. And this felt like a return to the normalcy. What we liked about the cafe was that it was that it had a very chilled and homey atmosphere. The food and coffee were excellent as well, so it was an added bonus.
The funny thing is that we went to this same cafe a few days before the wife was due in for her procedure, and here we are back again about 3 months later. Here we were 3 months ago.
And 3 months later, we were there with the family and Sophie.
Having got the green light to eat out (within reason), I opted for scrambled eggs on sourdough with bacon. It was supposed to be poached eggs, but since the yolks were still liquid (a mega no-no for me), I had to go for scrambled. 😦 Anyway, better than nothing. The wife had eggs benedict, and this place supposedly sells one of the best eggs benedict in London.
As I was strapping Sophie into the her Bug, the lady sitting at the next table said to strap her in tight, cos they (the lady and her friends) were talking about taking Sophie cos she was just too cute! 😀
The best thing was everyone enjoyed themselves, and it was a good change for me to get out and have a brunch/breakfast out of the flat for the first time since, well, before Sophie was born. But looking at the lunch and brunch menu made me realise just how limited my diet is now. I can’t have a steak or burger (medium rare. Not good) or shellfish or anything with cured/uncooked stuff in it. Baby steps I guess, just like Sophie’s diet in the coming months.
I’ve reached a mini milestone today, it’s 50 days since my stem cell transplant. It’s nothing more than 1/2 of the 100 days post transplant that’s the most risky for patients, and the doctor reckons that it’s a mini milestone. He thinks that I am doing very well, the GvHD rash is mainly gone, and besides the dry skin and itch that comes with it, doesn’t look like there’s more on the way.
There’s always the risk that it can relapse, but at the moment, it seems like it’s under control. The wife and I also got some opinions about some lifestyle questions that we have about my recovery, especially since it’s 50 days post transplant; like if I can head out to the shops when it’s not busy or if I should exercise, etc. Bottom line is that there’s no evidence to support anything that they recommend I do. Most of the infections that may afflict patients come from within their bodies anyway, and sitting at home doesn’t decrease that risk.
He did say that it’s good to exercise and go for brisk walks to build up the muscle mass that I lost when I was warded during the transplant. He even suggested going for runs and to work out more. Going out is also OK, but it’s best to avoid really crowded places with poor ventilation. He even suggested that I go back to work (which I have done) and also said that a short ride on the underground is OK, provided it’s during off peak hours.
This is certainly encouraging as what he’s saying is much less restrictive than what I was led to believe a few weeks ago. Basically I can live a semi normal life, with a few precautions. Mostly common sense stuff, like what you would do with a newborn baby. So we have to treat me like a newborn and what we won’t do with a newborn, we shouldn’t do with me.
With that in mind, the wife and I are planning some activities for everyone over the next few months, mainly outdoor activities and perhaps a visit to stores like Ikea on a weekday. Also in addition to working 2 days from home, I plan to work from the office one day a week in December, moving to 2 days a week in the office come the new year. Gives me something to do.
Well, things seem to be moving in the right direction. The GvHD is gone, and hopefully won’t return, blood counts look OK, energy levels are coming back up and my appetite is coming back. Hopefully this Christmas will be more joyful that the previous one we had. 🙂
I’ve been quite naughty lately. I’ve actually been out to the shops and supermarket, even when I’ve been advised not to by the doctors. Bad bad me. 🙂
But it’s quiet in the shops (being a weekday) and I drove so no messing about with viruses and bacteria in the tube or on the buses. Plus I made sure I didn’t touch anything and rubbed my eyes/nose/mouth etc so hopefully any bugs just stayed on my hands. Plus I washed them with anti bacterial soap after I came home. The doctors did say that I should avoid it unless absolutely necessary. Well I thought it was necessary to avoid me going insane!
On that note I have started work 2 days a week, albeit from home. It was difficult at first, trying to focus on work and getting things done after so many weeks of lying about on the bed and lazing about at home. But it’s for the best. It has certainly helped me get some more of my energy back and I feel more alert and generally better. Plus, my taste buds are almost back after months of not tasting anything. Maybe that’s a good thing considering I was eating hospital food for a while.
But I guess that also shows that I am (hopefully) well on the road to recovery. The GvHD rash on my body has more or less gone away and no new ones are appearing. Liberal application of the steroid cream works, apparently. The infection is getting better. I still feel a little coldy, but nothing like before. I’m also not coughing or blowing my nose as much. I guess my immune system is just a lot slower than others in dealing with infections like these. But after 1 round of anti viral and 1 round of anti bacterial meds, one would hope that the infection would indeed go away. But there you are.
Generally I feel much better than before. I can walk further, don’t feel like I need to take a nap every few hours and I am eating much more than I was. I am also physically stronger (but not as strong as before) and am able to focus for longer periods of time. I hope that by Christmas I will be 99% healthy and able to move on with my life. That’s the goal. 🙂
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.
One would think that having gone through 3 rounds of intensive chemotherapy, one round of radiotherapy and pre-transplant chemotherapy, I would be rid of pill popping for a while. Nothing is further from the truth. I reckon I am taking more pills now than I ever was.
The rubbery looking white and grey pills are immunosuppressants (cyclosporine), and I take that 2 times a day; the pills with the M500 on them are also immunosuppressants (myfenax), also 2 times a day. The large white pills are anti viral pills (Valacyclovir) and I take 4 pills (yes, 4) 4 times a day. The white capsule is the Lanzoprozol, to protect the stomach lining, once a day; the pink pill is Levofloxacin, an anti bacterial pill for my infection, twice a day and the small orange pill is Lamivudine. This one’s for hepatitis.
I suppose I should be thankful. I’ve been told that some people take even more pills. This is, apparently, fairly standard. The consultant has hinted that I will be able to reduce the pills soon, so it won’t be such a chore to remember what to take when.
The thing about taking meds is that they run out, and I have to get another prescription from the doctor and head to the pharmacy to pick them up. Normally in other countries, one would have to pay quite a lot for the pills but here in the UK, under the NHS, you’d only have to pay £7.40 per prescription. But it still adds up. Luckily for me, I have a concession from the NHS (all cancer sufferers do) and I won’t have to pay for prescribed meds for the next 5 years.
I really can’t imagine having this condition in Singapore or Australia where you’d have to pay full price or close to full price for prescription medication. That alone would be enough to drive someone to bankruptcy! I reckon I’ve siphoned enough out of the system to not complain about paying taxes ever again! 🙂
Sophie’s about 11 weeks old this week (22 Oct 2011). How time flies. It seems like just yesterday that the wife and I nervously went to Queen Charlottes and Chelsea Hospital in Hammersmith for our procedure, and finally got our hands on our little screaming bundle. I remember being shocked at the volume of her
cry scream, and how long she could go on for.
She was so tiny then. I was looking back at some of the pictures we took when she was just a few days old, and although at the time, we thought that she was quite a large baby, she’s just looked tiny now.
I remember when we first brought her home, I took a series of pictures of the two of us using the laptop camera. This is Sophie when she was about 2 weeks old.
This was taken when she was about 2 months old.
She has certainly grown. I still remember giving her a bath for the first time. I was so nervous, but eventually got the hang of it. Didn’t help that she was screaming the whole time. Even the midwife commented that she had a very very loud voice. And it was at that point that we knew we had a little firecracker on our hands.
She still has that look when she’s about to cry. I find it so amusing sometimes that instead of picking her up I just sit there and laugh. Honestly though, besides getting a little bigger and heavier, she still looks largely the same. Every one reckoned that she looked more like the wife when she was born, but now they think she looks a little more like me.
But at any rate, she’s our little bundle of joy and I am thankful to be here with her, and hopefully to have many many more years to come.
These are the things that I’ve done over the last 3 weeks or so I’ve been home.
That’s right. Nothing. Besides sitting on the sofa, watching TV (thank goodness for the Rugby World Cup), sleeping and going on the internet. Can’t go out, can’t go to the shops, can’t go grab a coffee, can’t go grab a pizza, can’t do anything. On the advice of the doctors. And with 3 paranoid women at home, can’t argue with them.
I think I’m starting to get cabin fever. The only place I go to now is the hospital daycare. Grrr. The wife and I joke that it’s become our usual ‘date’ place now since I can’t go anywhere else. Grrr. The good news is that I’ve been in contact with work and I’ll start a couple of days a week from home (maybe more if I can manage) so I won’t be so bored.
It’s important to keep physically and mentally active when recovering from the transplant. It’s way too easy to just lie in bed and vegetate the entire 3 months away, but it won’t do anyone any good. While some people may find the physical part of it more difficult, particularly if they had a rough transplant, I think to at least keep a healthy mind when recovering is important as well. Physically, I think I’m still pretty weak (can’t open a bottle sometimes) but mentally I try to stay on top of things. Hence the decision to work and to do some of my other ‘projects’.
But so far, besides going a little bit crazy confined to the 600ish square feet of home, I can’t really complain. There’re no serious complications post transplant and I usually feel fine. My blood counts are OK, immunosuppressant levels are perfect and the infection seem to be going away (yes, after 2 weeks, it’s still there). So fingers crossed, the consultant will let me venture out to some shops at relatively quiet times. I need to go shopping for a christmas tree. 🙂