Archive for January, 2011

Skin and bones

This chemotherapy crap is really bad for you. I had a look at myself in the mirror. I look like a collection of bones, held together by sinew and some muscle, and stuck inside a flesh coloured bag. It’s quite unsettling.

I have also lost most of the weight that I put on since I was admitted into the hospital. The doctors say almost everything is water retention due to the steroids and in most cases, people lose a lot of weight during chemotherapy.

What I can’t really understand is that I eat loads and loads of food. Not just my usual meals, but biscuits, calorie drinks, cereal bars, crisps, cakes and much much more. And I still look like a bag of bones. Where in the world did it all go? It’s like my body is just shrinking away under my skin.

I now know why the nurses here keep insisting that patients eat something, even if it’s just a few mouthfuls of food or a few swallows of the calorie drink. I can’t imagine what someone would look like if they were completely unable to eat or drink anything during chemotherapy treatment.

Well, at the end of the day, I couldn’t care less if I weighed 40kg when I leave the hospital. I can put the weight back on again, as long as I eat well and exercise regularly. As long as I leave cured and well.



The waiting game

So it begins. The waiting game. I am waiting to be on home leave. It’s an excruciating wait. I don’t know when it will be, and I won’t know for how long.

The problem here is that we just don’t know when my Neutrophils will be at a point where I can safely leave the room and the hospital. The general rule of thumb is that a patient’s Neutrophils must be over 0.5 before they are allowed to leave the room. It gets a little more complicated when the patient’s on home leave, as they’ll need to be supplied with meds and dressing changes and instructions on what to do and so on and so forth.

It also depends a lot on the consultant in charge. Some consultants will only let a patient go on home leave if their Neutrophils are 0.6 or 0.7 and above, while others are content to let the patient go at 0.5. And we can’t actually control how quickly or slowly the bone marrow produces white blood cells!

So I have to wait till my bloods are back every day before I know I can go for home leave.

If there’s one thing I hate doing, is waiting.

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More plasma, clotting agents and platelets

This is getting to be a habit. I am waiting for my last L-Asparaginase jab for Course 1. They came in a few hours ago to do a clotting screen, but no word about the jab so far. So I am assuming that it’s not as good as they would like it to be, and they’re preparing an infusion of plasma, clotting agents and platelets.

The last time they did it, they used 3 bags of plasma, 2 bags of clotting agents and 2 bags of platelets. Plus a bag of Vitamin K and a bag of Calcium. At an average of 30 minutes per bag, this could take a while. This time round it’s 2 bags of clotting agents and 3 bags of plasma. So I guess my clotting’s getting better?

I should point out at this point that L-Asparaginase is a very smart drug. In a nutshell, ALL Leukemia cells can’t synthesise Asparagine (an amino acid), and they need it to survive. Normal white blood cells make their own, so they’re OK. ALL Leukemia cells depend on the Asparagine that’s floating around in the blood stream. L-Asparaginase will bond with the Asparagine in the bloodstream, depriving the ALL cells. And then they die. And the best thing is that it doesn’t affect the normal white blood cells. Pretty cool isn’t it?

Update 29 Jan 2011 20:44

Just had the last jab of L-Asparaginase. Woo hoo! I have officially ended Course 1. If I had a bottle of champers I would pop it!



They’re reducing my pills! Hah! Yes!

Well, to be more specific, I am still taking the same pills, but at a reduced dosage. So instead of a handful of pills every morning, I take half a handful. Well, every little bit helps.

I guess this means that my body is producing enough WBCs and the natural infection fighting elements in the blood without too much help from the anti-whatevers. It also means that Course 1 is winding down in preparation for Course 2. That probably means a return to the original dosage when it starts, and probably a whole bunch of new ones as well.

The best news of all, is that I am slowly being weaned off the steroids (Prednisolone) from today and by the middle of next week, I will be off it. This means less mood swings, less water retention, a reduction in appetite (probably not so good) and I won’t look like a hamster stuffing his cheek pouches with seeds for much longer! Doctors said that this will take a few weeks to clear, so hopefully it will happen sooner rather than later.

I don’t see Prednisolone in the list of drugs for the next course, although there are a few that I’ve never seen before so the effects remain to be seen. I read one of them will cause a burning sensation when you pee. And ‘patients are encouraged to go immediately when the urge arrives’.


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Bruise almighty

I’ve been noticing many random bruises on my body recently. I’ve no idea how some of them came to be there, or when, but I do know that they’re not going away very quickly.

The doctor came to take some blood from my arm a couple of weeks ago. I posted some pictures, and a few days later, this is what it looks like.

Then this appeared on my thigh. To be fair, this was on my thigh before I was admitted into the hospital nearly 4 weeks ago. But it wasn’t as large or as pronounced as it is now. It’s about the size of a 50p coin now.

And this was on my leg for as long as I can remember.

I am pretty sure there will be more if I decide to look harder. The wife thinks I am a klutz as I’m always bumping and knocking into things around the flat. One thing’s for sure, I do need to be a bit more careful to not bump into things when walking around the room.


Peanut – 10 weeks 4 days old

The wife and I are obsessed with Peanut. We couldn’t wait for the normal 13-week scan that you get with the NHS, so we booked in a scan with a private Obstetrician on Tuesday, 25 Jan. I couldn’t go, but the wife made the trip down after work to Oxford Circus, had the ultrasound and a chat with the Obstetrician.

Peanut is doing very well. He’s more than doubled in size since the last time, nearly 40mm in length now compared to 18.3mm the last time round. You can also see his little arms and legs. He also has a good, strong heart.

The pictures are a little blur, as I took pictures of the ultrasound with my camera (picture of a picture. Makes sense?). But I made the pictures a little larger so we can all can see Peanut in the pictures. The arrow in the picture shows his heartbeat. 🙂

You can quite clearly see Peanut’s little arms and legs in the next picture. They’re probably about 2mm in length at the moment, given that they’re just about developing. The best thing was, the wife said Peanut was moving around a lot during the ultrasound; kicking his little legs and reaching his little arms out like he was trying to catch something. The wife says it’s like Peanut was waving to her and saying hello! 😀 I just wish I could have been there to see it.

My mum told me that I kicked her quite hard when I was a baby, and if Peanut is anything like me, the wife will be feeling it soon enough!

The Obstetrician also said Peanut’s facial features are starting to form! How cool is that??

The wife’s next scan will be in around 3 weeks, and it will be here in the hospital. If my bloods are OK, and I am not sick, the nurses may let me go for the ultrasound. I will be able to see Peanut first hand. And that’s good.

For now, I know is Peanut is strong and healthy. I will be strong and healthy for Peanut too.



The treatment so far – 27 Jan

Day 27 of Course 1 of the Induction phase of UKALL XII treatment, for adult ALL (Philadelphia Neg). Phew. OK. Now that’s out of the way.

Nothing much happening this week, just the routine jabs on Tuesday, Thursday and Saturday. We’re winding down Course 1 and preparing to move on to Course 2. As far as treatments are concerned, I’ve not had much. But I’ve had nearly a dozen bags of plasma, clotting agents, platelets, blood and all sorts of minerals and vitamins pumped into me over the last few days. It’s fine, as it helps me heal and I don’t feel that tired all the time. The L-Asparaginase can also muck the clotting up, so I am getting 4 bags of a clotting agents and some Calcium before getting the jab today.

Met with the consultant in charge of Leukemia patients today. There are about 6 consultants in the hospital. They operate on a monthly rotation so we usually get to see more than 1 consultant during our stay here. They come over and say ‘Hi’ every Monday and Thursday, and take the opportunity to tell the patients how they’re doing and so on and so forth. The consultants also meet amongst themselves once a week, to talk about the patients and their plan for their treatment. Apparently they don’t talk about me much, which is good! They usually discuss patients who are not doing so well! So please, don’t talk about me!

I asked about home leave (where the patient is allowed to go home for a few days to ‘recharge’), and in most cases, patients are actually encouraged to go home for a few days. I’m not sure when this is happening, or for how long, but it’s something that the doctors and consultants here will decide after I finish my last jab (Saturday) and after they monitor my condition for a few days.

So fingers (and eyes and toes) crossed, I will be back for a few days sometime next week, hopefully in time for Chinese New Year. A bit of a milestone to start the year of the Rabbit with.