Archive for February, 2011
I’ve finally got a bed! Yes! It will be in the same ward, but not the same room (I think). It’s not like I don’t like being at home, but as time drags on, one can’t help but wonder if there’s going to be a negative effect on my treatment and recovery.
There’s also another reason why I want to get in and start course 2 as quickly as possible. It’s Peanut’s 20-week scan. I want to be there for it. Peanut will be 20 weeks in the week starting 23rd March. Course 2 will take 29 days. That means that the scan will take place just as I am finishing my treatment. If all goes well, and the nurses let me, I may just be able to make it to the scan. The obstetrician consultant has kindly moved the scan to 8th April, so I should be discharged and well enough to go. 🙂 That would be very cool.
Anyway, I am due to go in at about 9:30pm tonight (Friday 25 Feb). It’s unlikely that the chemo will start on Saturday, but at least I am in the hospital, and have a bed, and not waiting for a bed.
It’s been 3 weeks since I was discharged from the hospital. And I’ve been trying to get back into the hospital to start the 2nd course of my treatment. The consultant initially scheduled me to come back in on 15th February, but there were just no available beds in the hospital. For some reason, there were also a lot of sick patients who needed treatment and rooms more than I did so they had priority for beds in the wards.
But hopefully there will be a bed soon, and I will be able to start treatment soon, and kick this blasted thing back to the stone age! On that note, the wife and I had an impromptu chat with one of the consultants today, about the delay in treatment and how it would affect the prognosis. The short answer was that he didn’t know. There’s just no evidence to suggest that the delay would compromise anything, but common sense states that the sooner the treatment starts, the better it is. But he did have a bit of news; the immunophenotyping results on my bone marrow showed no Leukemia cells. That’s very good news and very unexpected. I do have to continue treatment, and I still have to go through the transplant if there’s a donor, but for the moment, the treatment has been very effective in dealing with the Leukemia cells.
I also had the time to accompany the wife for her appointment with her midwife. She’s doing very well, blood works look fine, BP and heart rate’s good. Peanut’s doing very well. The midwife had a hand-held doppler that she used to let us listen to Peanut’s heartbeat. And it was awesome; loud and clear. We still have no idea about the gender, and that’s something we can only do when week 20 comes along. Fingers crossed that I can go with the wife for her week 20 scan. It all depends on how well I feel and how well I recover from the treatment. I do hope I can go, cos it’s been a while since I saw an ultrasound of Peanut.
Anyway, hopefully I can get a bed within this week. Otherwise I will need to get more meds, dressing and cleaning swabs.
It’s done! I got sick of waiting for the inevitable to happen so I went ahead and did it. I went with the wife on Saturday morning before we went for yum char with my mum and my brother. It was fairly uneventful and very very quick. The person doing it was skeptical at first, but capitulated eventually.
It took about 15 minutes, and cost me £8. But at the end of it, I think it was the right decision. So this is what I look like now.
I should point out that there is still hair on my head, but it’s very very short (about 2 mm). It’s a very odd feeling. For one thing, it’s cold. I have to wear a hat or cap when I am outdoors. And it’s also strange feeling the inside of the cap or hat on the scalp. But I guess it’s something I have to get used to.
It looks like I won’t be going back to the hospital until next week at the earliest. And even then, it depends on the availability of beds in the wards. And if someone is sick and requires immediate medical treatment, they get priority as well (and they should).
I have checked with the consultant, and he’s not too concerned about me starting my treatment later than usual as my blood counts are normal, and my bone marrow screen looks good at the moment. So unless something drastic happens or if I get an infection, it looks like I will be home till next week. Not that I am complaining. I need to go into the hospital on Friday to get my bloods taken and the lines cleared.
It’s the waiting and uncertainty that’s annoying me at the moment. I don’t like not knowing how things will pan out in the next few days, and I seriously don’t like the fact that I am left hanging and waiting for phone calls and messages on the day, telling me I have to come in today at a certain time. It makes it very difficult to do anything else other than sit at home and wait.
On a separate note, Peanut went over the 14-weeks mark this week, so we’re in the 2nd trimester. The wife went for a scan at 12 weeks and Peanut’s face is already forming. How cool is that?
You can clearly see the nose and forehead, and the tiny arms. The fingers are also forming, and very soon we’ll be able to see the tiny hands and feet. You can also see the bones and teeth buds (the white bits in the ultrasound).
Peanut has also grown quite a bit, and is 51mm now or about the size of a lemon. You can see the head and the rest of the body clearly now. Also, we can sort of feel Peanut moving around (more like a flutter) sometimes, especially when the baby is closer to the front. Can’t wait till we can actually feel Peanut kicking.
The next scan is in 6 weeks, so by that time we can probably get a confirmation of the gender. By then, we can start calling it a proper name, rather than Peanut. 🙂
It is coming off, so I’ve decided to make a note of the date my hair starts to noticeably come off, to the time I’m completely bald. Ha! It’s the least of my problems at the moment, and I am not concerned about it. It’ll grow back. Otherwise I’ll get a scalp tattoo!
20 Jan 2011
First signs of my hair falling off. 3 or 4 strands at a time when I run my fingers through my hair. There’s also a lot of hair on the floor and pillow.
21 Jan 2011
This is what my head looks like now.
25 Jan 2011
It’s been falling off a lot over the last few days. So it’s thinner, and sits flatter on my head.
I’ve also noticed a small bald spot my head.
I’ve decided that once it starts falling off in clumps, and I start getting bald spots on my head, I will shave it all off. Ha!
27 Jan 2011
It’s really starting to come off now. The hair’s visibly thinning and flatter, and it’s just falling off, even without me doing anything!
This is what people here call a ‘pixie cut’. Flat, short hair plastered to the scalp. Some people get it styled this way intentionally! Go figure! It doesn’t look that much different to the pictures above. I guess that just means I have a lot of hair!
A little sick but what the heck.
30 Jan 2011
I think I will be bald by the middle, or end of the next week. Every day a mass of hair comes off (I don’t pull it) and a massive bunch comes off in the shower! And the cleaners sweep up a whole bunch of hair every time they clean the room!
But I think the worst thing about losing all that hair is having it fall into my food! Argh!
But it’s cool. I have a cool cap!
2 Feb 2011
Right. Hair’s been dropping all over my shirt, towel, sheets, the floor, my food, the sink. And I still have a relatively full head of hair. I really do have a lot of hair.
The receding hairline is further receding.
It will reach the top of my head soon I think.
5 Feb 2011
I’m home, and I’m losing more hair than ever. Me, my wife and my mum are all picking my hair up from everywhere! There’s hair in my food, on the sofa, on my pillow, in the shower stall (clumps and clumps of it) and on my clothes.
At the end of the day, hair grows back so I am not fussed. Maybe I should sell the space on my head for advertising!
8 Feb 2011
It’s official. I have bald spots! It’s very clear at the side of my head, and on the top and back of my head. I think I should wear my cool cap out from now on.
Most of the hair loss is on the side of the head. You can really see through to the scalp now.
Mum thinks that I’ll be completely bald by the end of next week! Ha ha.
16 Feb 2011
The hair is getting thin (and uneven) to a point where I need to wear the cap out. The head will clearly identify me as a cancer sufferer, and it’s not something I want to advertise at the moment. I prefer to be bald. Anyway, there’s actually less hair falling out now especially when I shower, but as the wife pointed out, if I lose 5% of my hair when I shower, I will lose more hair when I have more hair, and less hair when I have less hair. Makes sense from a certain point of view.
This is what my head looks like now.
I’ve also been told that I have a massive hole at the back of my head. So all the more reason to wear the cap.
I’ve decided to post this up before I turn completely bald. Because I am not sure that I will be completely bald (there’s new hair growing already) and this post is getting way too long.
I am about 90% packed and ready to go back to the hospital. I have mixed feelings about this, as I dread going back, and I dread spending another month at least in the hospital being bored to the point of insanity. But at the same time, I want to go back, as it takes me another step closer to a resolution. So I grit my teeth, and just do it!
Having experienced this before I think I am a little smarter about what I need for the stay and what I need to do so my bones and muscles don’t get too weak. For starters, my bag is a lot lighter this time. I am packing less and taking less of the non-essentials. The family can bring them over if I need them anyway, so it’s not that important. I am also taking more books and magazines with me, as I need to spend less time in front of the computer (gives me a stiff neck and shoulders).
I also ordered an Exercise Ball and a pair of Kettlebells (Thanks Jaz 🙂 I used the voucher) so I can get some exercise in the room. I wanted a Bosu ball instead but they were well over £100 each so the exercise ball will have to do. Besides, it doubles up as a chair so I can sit and maintain a good posture while I am on the computer. I’ve got the iFitness app in my iPhone, and it’s was really helpful when I went to the gym. It also has loads of exercises for the exercise ball and kettlebells. So I shall get my bum into gear and do them.
The consultant also encouraged me to go for a walk around the park behind the hospital, especially since the weather will be getting warmer soon and the park will be quite nice. It’s also safer to walk round the park than the hospital corridors; less chance of a virus in the park. He reckons that I can still do it if I am Neutropenic, as long as I have a mask on when I am in the common areas of the hospital.
So at least it’s something to look forward to, amidst the routine and boredom of the hospital stay. The only problem that I can foresee is that I will have chemotherapy of some sort most days of the week. And I can’t be sure when it’s coming. So I will need to plan the exercises and walks around that. It’s not a big deal and I can always inform the nurses that I am going out and they will administer the drugs after I get back.
The problem now is getting back into the hospital. I just found out that I wasn’t on the list of patients being admitted this week. The support nurse is sorting it out, but I am not sure when I can actually get into the hospital and continue my treatment. Oh well, I’ll just have to wait at home.
This is going to sound very odd, but I miss driving. I miss the feel of the accelerator pedal, the feel of the steering wheel and the general feel of being in control of a moving vehicle. The wife insisted on doing all the driving we found out I had Leukemia. Her reasoning was that she needed to get used to driving (and parking) the car, since she hardly ever drove in the city. And it’s the same since I came back home. She’s been doing all the driving and although I am fine, I was never allowed to drive. Until now. 🙂
The wife let me take the car to run some errands around Portobello Road and to get some stuff from the fishmonger and the supermarket. It felt really good to drive again. Especially since the car had just been serviced, it was very very smooth and responsive. But to me I think it was a taste of normalcy as I used to do all the driving, and I drove everywhere.
At the end of it, I think everyone was more confident that I can actually drive (when someone else is in the car with me of course) and it actually gives us a little bit more freedom as we don’t have to rely on the wife to drive us everywhere. I can manage perfectly well.
On a separate note, we made Vongole pasta over the weekend, and it was the reason I braved the crowed at Notting Hill Gate and went to the fishmonger there. Clams. And lots of them. Vongole pasta is one of our favourite lazy weekend lunches. It’s quick, delicious and very very comforting.
We added some tomatoes in for some acidity but other than that, it’s a classic recipe. Although I think our version actually has more clams than pasta!