Archive for April, 2011
I was finally transferred to a single room on Thursday 28 April 2011. Not that the shared room was bad in any way, or that the nurses were poor, but it was just impossible to get any rest. It may just be the bay that I was in, but everyone had either an infusion pump or some other apparatus beeping, whooshing, whirring or clunking along 24 hours a day. It gets even scarier when some one gets an infection in the ward. Anyone who then has a compromised immune system will be at risk.
So I was moved to the Weston Ward, also a Haematology ward, but a little older than the one I was in previously (the Dacie Ward). It’s a little more spacious, and there’s more usable space. It doesn’t have the double doors that an isolation room usually has. But it’s miles better than the shared room. I was able to get more sleep in the room.
More space to stretch and to move around in. I can probably do the 7-step exercise program here instead of the 4-step program. The chair to the right of the picture looks comfy, but doesn’t convert to a bed unfortunately.
The obligatory TV, this time with all the terrestrial channels. The one stupid thing about the TV is that it displays the channels in alphabetical order, not channel order. So as an example, BBC Four will come before BBC One and so on. I can’t figure out how to change it! Bizarre!
This is the business end of the room. Not as big time as the Dacie ward, but big time nonetheless.
The door. Doesn’t need any further explanation.
All in all, good to be here. I rather not be anywhere near the hospital but since I have to be, it’s probably the best place to be.
Right. Intensification has officially started. Actually it started 2 days ago but I was too lazy to post something up. Whoever designed the course clearly chose a very appropriate name. It’s not only an intensification in terms of the drugs used, it’s also more intense in terms of timing.
Before the drug can be administered, I needed to be ‘hydrated’ with a mixture of saline and Sodium Bicarbonate. This is to make my pee a little more alkaline, so the drugs won’t wreak havoc on my kidneys too much. Not too bad in itself, except that the hydration takes place over 24 hours. So I am hooked up to my ‘friend’ for 24 hours. Then there’s the drug infusion itself. It’s given as 2 bags, the first infusion is a small bag and that given over 1 hour. The next bag is massive and is given over 23 hours. That’s right. It’s another 24 hours of being hooked up to my friend. Plus, while the drugs are being administered, I am still being hydrated. So there are 2 bags going on at the same time.
After the drugs have finished, I still need to by hydrated for yet another 24 hours. This is to ensure that my body continues to flush out the toxic MTX. Then they continue to monitor my pee and blood to check the levels of the drugs in my body. Only when it reaches a safe level will I be allowed to leave the ward and go home. By my own calculations, it will probably be Sunday, and back in again for pre-hydration on Tuesday.
That’s all well and good, except that it’s seriously annoying to be hooked up to the infusion pump 24 hours a day, for 3 days. I can’t go for walks, go get ice cream, go do anything except sit on the bed. One of the major inconveniences of having fluids pumped into me is the continuous need to take a piss. And since I am still in a shared ward, it’s like negotiating a minefield of bins, shoes and toes. Especially in the middle of the night.
Anyway, the chemo is supposed to be done by 7pm tonight, and I am due to be moved to a single room today. Hopefully that will pan out.
Well, I am back in. Different ward, different nurses, different chemo regime, but one thing remains the same; the waiting. I am waiting for chemotherapy to start. The doctor has seen me, but has to confirm with the senior registrar about the treatment plan and process. She’s in another ward, so everyone’s not sure when she’ll be back. So no one’s sure if the chemo is going to start today. Technically, if my chemo doesn’t start today, I can go home and come back the next morning. Darn! I want to go home.
This ward and room is a lot smaller than what I used to get at the Dacie Ward. I can at least do my 4-step exercise at the Dacie Ward but here, it’s the ’round the bed shuffle’.
This is the view from my bed now. I get this privacy curtain in front of me, a glass wall on my right (facing the corridor) and a wall to my left.
The wall, which I can reach out and touch. Come to think of it, it’s probably about the same size as our kitchen in the old flat in Queens Gardens!
At least I have somewhere to hang some clothes and put my picture and my little green monster. 🙂
The ward is also noisier and there are loads of people around. There are things that you don’t really notice in a private room, but you do notice in a shared ward. Like a private bath and toilet. Like the water fountain in the room (we need to go to the kitchen now to get it). Like the storage space for clothes and other knick knacks. Like the fridge. Like a comfy sofa that I used for working.
Oh well, at least it’s a room. I hope that I will be transferred sooner rather than later to a single room. I can’t imagine being in here when the treatment makes me Neutropenic.
The wife made some of the most awesomemest peanut butter and chocolate cookies today. It was crispy on the outside, chewy on the inside. We got the recipe from the hummingbird bakery cookbook. 🙂
She originally wanted to make it in the afternoon after some peanut shopping, for me to bring into the hospital the next day. I had called the hospital earlier in the morning to enquire about the beds, but they didn’t have one at the time. However I got a call in the afternoon when we were just about to get started. I had a bed. It was in ward D7, in a shared room. I was to go in immediately, but after the doctor saw me, agreed for me to go home to report back bright and early the next morning. So we decided to go ahead with the cookie making after we got back from the hospital, so I could still bring it to the hospital in the morning.
D7 is a ward that holds many unpleasant memories for me. It was the ward that I was told to report to when the orignial blood results came back in December 2010. I had to go there every day to get my bloods taken before I was sent home again. The wife and I (and little peanut, who was literally the size of a bean then) spent a good many hours there over Christmas.
D7 is also for chronic Leukemia patients. So the people you tend to see there are older and generally don’t do much. So the mood there is pretty sombre. Chronic Leukemia tend to be about managing the Leukemia, whereas Acute Leukemia is about treatment. The nurses are all haematology trained, so I will be in good hands still. Anyway, they also said that if a bed in the other wards became available, I would be transferred there. Here’s to hoping for that. In the meantime, I will guard my peanut butter cookies with extreme zealousness.
The wife and I went for an overnighter a few days ago. It was sort of a ‘relax and unwind’ trip given that we had a few days before I went in yet again for the next phase of my treatment. It was also a trip before the little one arrived, cos after that it will be 3. And we’ll need to look for baby-friendly places.
One of the best things about living in the UK is that there’re loads of nice little towns and villages dotted all over the country. And in each of these little towns and villages are these quaint little BnBs or inns, or cottages. They can be pretty pricey but there are some really good deals if you look.
This time, we went to the historic town of Woodstock, not far outside Oxford and the home of Blenheim Palace. It’s a very nice, quaint little town about an hour’s drive from where we live in London. It’s supposed to be a chilled relaxing overnighter, so I booked us what was called a ‘woodstock escape’ package in a hotel called The Feathers, in the middle of the town. We got there, and we got an upgrade into a suite! A nice surprise to start the trip.
The main sleeping area in the Suite is pretty large, with a large comfy bed and a small sofa (which we used to dum our stuff).
There was also a small living area adjacent to the sleeping area, with a place for tea and coffee and a sofa. This was very very comfortable. I think the only complaint we had was that the property didn’t have a lift. Other than that, it was a very very comfortable room.
The bathroom, with a massive bath and a shower stall. And heated floors! Not that it mattered then, it was nearly 30 degrees!
The package also included dinner for 2 in the hotel restaurant and breakfast the next morning. More about that later.
It’s all systems go for baby shopping now. The wife and I were at Bicester Village a few days ago, looking for things to get for the little one. So far we’re concentrating on clothes, but will move on to the larger stuff when the time is right, and when the sales are on.
One thing that I will say about baby shopping, is that it’s very very stressful. Not because it’s not enjoyable or anything but because there are lots and lots of things to think about and buy. First of all, is the size. We know Peanut is a girl, and we also know that she will be quite small. But by golly the clothes for newborns here are massive! She’ll probably get lost in them! Anyways, we got some baby suits and a very cute dress for her. We’re going to get more over the next few weeks.
We got some items from The Little White Company (The White Company for little ones). They were better than half price so I reckon we got some really good deals.
I think we are going to have to wait a few months before she can wear that last item. 🙂 We also went to Polo kids, and went mad! But then logic and sanity overcame us and we decided to buy just one piece, our favourite.
There’s also the weather consideration. She’ll be born in late August, so most of the things that we buy will be summer clothes. But once she hits 3 or 6 months, it will be well into winter so we’ll also need winter things. And we probably can’t buy them now, cos they’re not out in the stores yet. So no matter how cute the baby things for 3 – 6 month olds are, we’ll have to stay our hand (and wallets).
It’s also very strange shopping for a baby. We used to laugh and snigger at the people we see getting all soft and gooey when shopping for baby things, and how they can justify spending that amount of money on something that will probably only last a few months. But now, we find ourselves in the same boat. So ironic isn’t it?
So, it’s time for the intensification phase of the treatment. The intensification phase follows on from the Induction phase and lasts about the same amount of time. But the good news is that the drugs make the patient Neutropenic very slowly and as a result, it’s more than likely that they will let me go home for a few days between courses.
Drugs used for this phase will be very similar to the ones I had earlier, but in a different form. Drugs are given on days 1, 8 and 21 of the treatment. The first is the L-Asparaganise, which is given as a jab into the muscle. This one hurts a lot when it goes in. It was given as a 5000 unit jab in the first course of the Induction phase. This jab is 10,000 units so it’s double the amount. So it will probably hurt for a lot longer.
The next drug is Methotrexate (MTX) which is usually given as an intrathecal (jab into the spine). In this case, it’s given as a drip. MTX as an intrathecal is given in 12.5mg doses. As a drip, it’s given in 3g doses, so it’s about 200 times stronger. MTX didn’t really affect me much but this is totally different so we’ll see.
The thing about high dose MTX is that prolonged exposure to it can be fatal to the patient. So the doctors will monitor the levels in my body after it’s administered and if necessary, perform a ‘rescue’ to bring the levels down. This is one of the considerations that will determine if I can be back home between treatments. It’s likely that I can be home between days 8 and 21, but they’re not too sure about being home between days 1 and 8.
Well it’s all well and good, as far as can be. I’m booked in for readmission on Easter Monday, depending on the availability of beds. So we’ll see how that goes.