My journal this week is particularly downbeat and reads a bit like a “I did this then I did that” dreary monologue. I could summarise the week by saying it’s had it’s up and downs with the cloud of fatigue still hanging over me. It hasn’t been quite as bad as it reads. For those who are gluttons for punishment; here is the complete journal for last week...
Journal for Monday 6th December
Not one of my better nights sleepwise. I don’t feel too bad for the lack of sleep but it will mean my sleep cycle is all to pot for a day or so. I must try to sort it as early as possible or it’s impacts will roll on and before you know it I’ll find it’s the weekend again with nothing to show for the passage of the week.
The day dragged a bit in my usual fatigue style stupor. What a waste. My time is precious and it’s dripping through my fingers.
Tuesday 7th December
I have spent the day building and launching a website. The last time I did something like that was when I got my first PC at home, a Gateway 2000. I signed up with a ISP who no longer exists today but their package gave me a couple of email addresses and importantly some webspace. I taught myself the basics of hand coding HTML and launched a site. Today it would get laughed at. Anyway, fast forward to here and now and I have built the shell of a website with four static pages which will be at www.stevenewson.com (and www.stevenewson.co.uk ). I’ve also pointed my posterous blog at the website domain so the blog is at blog.stevenewson.com
For those that follow me by other means don’t panic, nothing has changed.
In the evening it was time to go and see my consultant for a post chemotherapy and CT scan review. There was a mixed bag of news. On the good news front the lung cancer and bone cancer are currently under control and responding appropriately to the chemotherapy. The news of the liver cancer was not so good. The liver cancer “spots” have become slightly larger and more defined. The plan is to have Christmas, get a scan at the end of January and see what the liver cancer is doing at that point. The consultant told me that he is considering prescribing a drug called Tarceva which has had some good results. It’s a pill based chemotherapy, so it avoids being wired up to bags of fluid for 24 hours which is really good news from my point of view. The common side effects are a skin rash and diahorrea. I feel quite positive about the news. Yes, it could have been better but it wasn’t really dreadfully bad news. I’m encouraged about the Tarceva because I have met someone on that drug at the lung cancer support group and he had had extraordinary good results from it. Whilst the same may not happen for me, as always when you are in my position, you will take any bit of a result you can get.
Went to Pizza Hut on the way back and enjoyed a Pepperoni feast.
Wednesday 8th December
Back pain isn’t helping things at the moment. I slept well last night, although in what I would call tranches. A few hours sleep then awake, sometimes just to turnover or go to the loo, sometimes needing to get up and stretch and have a cup of tea. Had an extra tranche at about 9:30 am and the next thing I knew it was almost noon.
Having been stuck in the house when on my own for a few weeks and certainly since the snow started it felt good to get out today, if only to go round to the chemists and pick up some medicines and to little Tesco.
Thursday 9th December
Another day that disappeared to a haze of fatigue.
Friday 10th December
Had a visitor for Twitter training in the morning which i think went well. Slept a bit in the afternoon. Crashed out in front of the TV for the evening.
Saturday 11th December
Went shopping in Highcross in Leicester. Think I am all set for Christmas now with cards and presents. Thirteen days before the big event. This is unheard of territory for me, but I like the feeling of control. I am sure things still have the capacity to go wrong, and knowing my luck it’s just a matter of time before the next bit of bad news hits me, but I will definitely enjoy the feeling whilst it lasts.
The X Factor went pretty much the way I would have liked and forecast but not the way many armchair commentators have been saying that it would. So many people seem to think that Cher was going to win, but lo and behold, that’s not going to happen. She was more gracious in defeat than I expected given some of her recent diva style behaviour.
Sunday 12th December
Harry Potter and the Deathly Hollows Part One. Versus sleep. Sleep won, so I did fall nod off a couple of times and, so I’m told, I snored. Bet that was popular! And probably accounts for the bruised ribs from getting poked (I’m joking!).
I very nearly wasn't right with my X Factor predictions. Rebecca put up a great fight for the top slot and at one stage I thought she might have done enough to knock Matt off the podium with her winners single which I thought was a much more iconic vocal and a fantastic performance. But all the speculation is over and my 1, 2, 3 has come good. I should have had money on it at the bookies but to be honest that's I thought I always have afterwards rather than before. Just as well, my Dad was a bit of a small time gambler and it never really paid off for him. Given my addictive personality style getting into gambling might have been the road to ruin for me.
Journal for Monday 6th December
Not one of my better nights sleepwise. I don’t feel too bad for the lack of sleep but it will mean my sleep cycle is all to pot for a day or so. I must try to sort it as early as possible or it’s impacts will roll on and before you know it I’ll find it’s the weekend again with nothing to show for the passage of the week.
The day dragged a bit in my usual fatigue style stupor. What a waste. My time is precious and it’s dripping through my fingers.
Tuesday 7th December
I have spent the day building and launching a website. The last time I did something like that was when I got my first PC at home, a Gateway 2000. I signed up with a ISP who no longer exists today but their package gave me a couple of email addresses and importantly some webspace. I taught myself the basics of hand coding HTML and launched a site. Today it would get laughed at. Anyway, fast forward to here and now and I have built the shell of a website with four static pages which will be at www.stevenewson.com (and www.stevenewson.co.uk ). I’ve also pointed my posterous blog at the website domain so the blog is at blog.stevenewson.com
For those that follow me by other means don’t panic, nothing has changed.
In the evening it was time to go and see my consultant for a post chemotherapy and CT scan review. There was a mixed bag of news. On the good news front the lung cancer and bone cancer are currently under control and responding appropriately to the chemotherapy. The news of the liver cancer was not so good. The liver cancer “spots” have become slightly larger and more defined. The plan is to have Christmas, get a scan at the end of January and see what the liver cancer is doing at that point. The consultant told me that he is considering prescribing a drug called Tarceva which has had some good results. It’s a pill based chemotherapy, so it avoids being wired up to bags of fluid for 24 hours which is really good news from my point of view. The common side effects are a skin rash and diahorrea. I feel quite positive about the news. Yes, it could have been better but it wasn’t really dreadfully bad news. I’m encouraged about the Tarceva because I have met someone on that drug at the lung cancer support group and he had had extraordinary good results from it. Whilst the same may not happen for me, as always when you are in my position, you will take any bit of a result you can get.
Went to Pizza Hut on the way back and enjoyed a Pepperoni feast.
Wednesday 8th December
Back pain isn’t helping things at the moment. I slept well last night, although in what I would call tranches. A few hours sleep then awake, sometimes just to turnover or go to the loo, sometimes needing to get up and stretch and have a cup of tea. Had an extra tranche at about 9:30 am and the next thing I knew it was almost noon.
Having been stuck in the house when on my own for a few weeks and certainly since the snow started it felt good to get out today, if only to go round to the chemists and pick up some medicines and to little Tesco.
Thursday 9th December
Another day that disappeared to a haze of fatigue.
Friday 10th December
Had a visitor for Twitter training in the morning which i think went well. Slept a bit in the afternoon. Crashed out in front of the TV for the evening.
Saturday 11th December
Went shopping in Highcross in Leicester. Think I am all set for Christmas now with cards and presents. Thirteen days before the big event. This is unheard of territory for me, but I like the feeling of control. I am sure things still have the capacity to go wrong, and knowing my luck it’s just a matter of time before the next bit of bad news hits me, but I will definitely enjoy the feeling whilst it lasts.
The X Factor went pretty much the way I would have liked and forecast but not the way many armchair commentators have been saying that it would. So many people seem to think that Cher was going to win, but lo and behold, that’s not going to happen. She was more gracious in defeat than I expected given some of her recent diva style behaviour.
Sunday 12th December
Harry Potter and the Deathly Hollows Part One. Versus sleep. Sleep won, so I did fall nod off a couple of times and, so I’m told, I snored. Bet that was popular! And probably accounts for the bruised ribs from getting poked (I’m joking!).
I very nearly wasn't right with my X Factor predictions. Rebecca put up a great fight for the top slot and at one stage I thought she might have done enough to knock Matt off the podium with her winners single which I thought was a much more iconic vocal and a fantastic performance. But all the speculation is over and my 1, 2, 3 has come good. I should have had money on it at the bookies but to be honest that's I thought I always have afterwards rather than before. Just as well, my Dad was a bit of a small time gambler and it never really paid off for him. Given my addictive personality style getting into gambling might have been the road to ruin for me.
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