Tuesday, 25 March 2008

The funny thing about hair

Well, its not really that funny and its just my hair, but some of it refuses to leave. I have kind of a fuzzy half bald (uber thin hair-wise) head. Reminds me of the natural hair of a chap I used to work with (I won't mention his name, but if anyone who used to work with me reads this, they'll know instantly!).

Call me weird, but I kind of miss the in-between stage, where my hair was patchy and half-there and half-not-there. The only reason is that it made me look a bit like "The Kurgan" from Highlander, especially with my biopsy scar on my neck (I wish I'd taken a picture of me then, as I could do a side by side comparison). Here is the Kurgan, if you didn't know:

And here he is again, but this time wearing a rather fetching hat:

A & E Tour 2008

For the Easter bank hols we decided to get away from it all a bit and shoot off to Devon. No problem there. The kids were excited about going to the seaside and so was I. We got there okay (3 hour drive, but traffic was ok) and our hotel was alright (appart from being really cold). We went out for some dinner to a restaurant called the Pier Point, which is on the sea front.
It was a nice evening and my son Harry was reasonably well behaved and was happy to crash out in his buggy for the walk back to the hotel. All good.

Now, Saturday, I started to feel rough again. I hadn't been feeling 100% anyway, but thought I was on top of things. After lunch, I needed to go back to the room and crash. I felt my temperature rising and my head was banging. A bit less than ideal. I didn't get up again until Sunday. Sam took the kids out and then nipped for a quick drink in the bar while I slept on. I woke up several times and just felt bad. In the morning I gave in and rang the unit back home and they told me to go straight to hospital as I could be suffering from Neutropenic Sepsis. Lovely. My wife drove me over to Torbay hospital A&E, where we queued up for a surprisingly short time (the queue beating power of being a chemo patient). We then were sat in a little examination room for a while until a doctor came along, asked the same old question, stuck a line in my arm and then shot off again. After a while, I suggested that Sam and the kids carried on with what we were originally going to do today, which was go to "The Living Coast". Looking at the picture below, you can see the netting above it. One reason its good fun for the kids is that they have penguins and other birds running around amongst you as you walk around, which is quite amusing.
Anyway, they left and I was meant to ring them as soon as I was leaving, so I could catch up with them if possible. It wasn't until the next doctor arrived and informed me that they wanted me to have IV anti-biotics and to stay in under observation for a couple of days, that I realised my holiday may have come to an abrupt end. I rang Sam and told her the news, she couldn't believe it and I think she realised that I hadn't just been whinging about headaches and things for attention!
Next, I received two different anti-biotics by IV. These were described as being Demesdos strength, by the doctor, which was a comfort!
Then I played the waiting game, interrupted only by several different people popping their head round the door to tell me someone would be taking me to the ward soon.
Instead, I ended up getting a chest x-ray first. The radiologist (quite a jolly chap) informed me that I have "long lungs" and if I have any x-rays in future, letting the radiologists know will make their day (not sure if I believe him, but I'll remember).
Finally, someone came to get me. I was taken to the ward by wheelchair, as for some reason you're not allowed to walk by yourself. Seemed a bit bizarre, but hey, chaffeur driven is cool.
I had my own room, in the Turner ward. It was quite nice, as wards go and the nurses were all friendly. In fact as soon as I got there, I was brought lots of food (always good).
My stay was pretty uneventful. I got anti-biotics and blood tests and then on monday they released me back into the wild (wahoo!). On the plus side, I saw from my discharge notes that the x-ray showed a mass of 5cm, whereas the original mass was nearer 10cm, so that looked pretty good to me. I'll see what my consultant dude says about that on Friday (chemo cycle #3, blimey, doesn't time fly)

Thursday, 20 March 2008

Hot stuff

This week, my wife, Sam, our and little boy, Harry, have been ill. I guess it was on the cards for it to head my way and that's what happened last night. Annoyingly, this week is the week when my blood counts drop due to chemo mashing up my bone marrow and spitting out lots of dead immune system chappies.
I basically started to feel a bit unwell, with a cough that made my brain hurt (OK, it hurt my head a bit, but I like to exaggerate) and my temperature started to rise. Now, I've been told that if my temp hits 38c, then its off to hospital with me. It started to get close and I really should have rung the hospital and let them know, but foolishly I decided to ride it out. Luckily, it came down again and today it has been slightly higher than usual but not too bad. Even so, I've still felt pretty lousy and been spending a chunk of the day lounging in bed. I'll see how tonight goes and see if the battle v the temperature is on again.

Wednesday, 19 March 2008

The week so far

This week has been okay. I've felt pretty good since last Friday.

My wife and one of the kids have a cold. She has been laid up in bed and not very well at all. Perfect timing for when my bloods are low. So far, so good though. My poor immune system seems to be holding its own. My temperature is normal and I feel good.

Friday, 14 March 2008

Post chemo #2

So, a few days since my last post. Just felt knackered and couldn't be bothered to fire up the laptop. Feel somewhat more human today.

Chemo day went ok. I had my first infusion of Rituximab, which meant I was due a long day. I got there around 8.30 and they dosed me up with paracetamol, periton and some steroids, ready for the R. After 3 goes to get the needle in my hand properly (one came out, one missed and one was a bit leaky. Great), the Rituximab infusion started real slow and all went pretty well. As the infusion rate was speeded up (every 30 minutes) I started to go blotchy and they stopped and loaded me up again with periton and steroids and then kicked off again. During this time I had my check in with the doc and found my marker levels were normal but my white count was pretty low (but ok to continue). Last week it had been nuked and the two blood tests I had (post chemo and pre chemo) had it around the 1.0 mark, so it would have dropped between those days, but I don't know where to.

The saturday and sunday had me totally fatigued and with a headache. I felt like I was hung over but uber tired. I didnt leave my bed very much.

Tired, tired and more tired. Really felt fatigued. On the plus side, the nodes in my neck started to become sore on monday and by wednesday had pretty much melted away! Yay! One down, one to go.

Same as monday and tuesday, but at night it was a bit crazy. I just couldn't sleep. Mad, fast thoughts running through my head, just like being a kid on Christmas eve! I reckon it was my body adjusting to the steroids withdrawl and sending me through the roof. I had to get up to pee every hour or so and then drink a load of water again. Mouth so dry. This dry mouth thing is eating my teeth up though. Lots of new cavities coming to town. Stupid cancer.

Friday (today):
I feel almost human again. Somewhat tired but not unmanageable, I don't want to stay in bed. My weight is down, so looks like its eatsville time.

Thursday, 6 March 2008

Pre-Chemo cycle #2 day

Yesterday I went in to give some blood for my pre-chemo blood test. I had a very jolly and slightly mad nurse taking blood this time. She gave me a mini lecture on the necessity of a parent to be over-protective. Kind of amusing in a weird sort of way.

Tomorrow is chemo #2. This time I'll be getting Rituximab as well. This means I need to be there early, as the first application of it can take up to 4 hours! Apparently people can react badly to it, e.g. allergic reactions etc. If this happens they'll treat the symptoms and then continue. As my consultant said, "it may take a while, but no matter what, you're getting it!". Worked for me.

I'm a bit nervous of my blood test results. Over the last week my cough has returned, although not as bad as originally, but it is getting worse day by day. Also, the itchy leg thing that I had before has also started to come back. I know I can't do anything about it and I'll find out tomorrow.

And finally... The "Killing Cancer" T-Shirt I had made arrived. The design looks like this:

Sunday, 2 March 2008

Mothers day

I spent the weekend in Nottingham, which is where I'm originally from and where my sister Jane lives. I travelled up there friday evening with my sister Chris who had come to visit. The journey went well until we hit the M1 and everything ground to a halt. The last part of the journey that should have taken 20 minutes, then took 2 hours. Lovely!

I drove back home to Maidenhead on sunday morning, ready for mother's day.
My mum passed away 2 years ago, but there's still no escaping buying cards and presents, as my wife will be expecting them from the kids. I got my little two yoer old to "sign his name" on a card and then he took the card and present through to his mum. He insisted on opening the present and also claimed it for himself.

Had a good weekend and last week was pretty good too. I felt pretty normal!