Steve Newson DOT net

The end of the long and winding road

2011-01-24T10:32:00.001+00:00

It is with great sadness that I send this update to Steve's blog, I am sure the silence over the last few weeks has spoken volumes to you all.

Steve's health deteriorated very quickly after New Year and he died in hospital on Thursday 20th January. He was a unique and special man and I feel very grateful to have known him for what was unfortunately such a short time.

It seems far too early to post a tribute type message, indeed I suspect that once I start to delve into the depths of his laptop I may find something he prepared earlier!

Funeral arrangements have now been made, everyone (excepting ex wives) are very welcome to join us in celebrating Steve's life, please email steve.newson@gmail.com for details.

Posted via email from stevenewson's posterous

Not a lot about not very much...

2010-12-20T18:17:00.001+00:00

Well, it's gotten to Saturday evening already and I have not written a single word for my journal. I guess that says something about the week, what is says to me mainly is that I have been unable to find the energy to be capable of writing anything down. Monday involved a bunch of chores, most importantly getting the car fitted with new tyres, the old ones were beginning to look worn and this isn't the weather to be driving on marginal tread. Had a nice visit from another old Post Office colleague from my later years with Parcelforce and the hand held scanner project. I should try and find some org charts from the time period. Actually that's a great piece of advice if you are starting out... keep the org charts which kind of represent your career and the relationship with key colleagues. Trust me, when you try to have the "do you remember what's his name from accounts" later in life you"ll thank me. And don't rely on what you currently think of as your cast iron memory, it will eventually let you down and you'll be doing the same kind of research I have been doing recently. LinkedIn might eventually take the place of retaining those old org charts or phone lists - assuming you connect with all your colleagues as you move from role to role.

On Wednesday I was supposed to travel to Maidenhead for a do, but I had already figured out on Monday or so that I was not up to the round trip. I could have made the trip in, but would almost immediately have needed to sleep. Thursday and Friday passed me by in a cycle of pain, morphine, fatigue and sleep. It took until late Friday to feel like I had the right balance of medication / timing.

I feel a little unsettled by the fact that the underlying level of morphine I am currently taking is higher than what I have been on previously and worried if I have reached a point where I will always suffer this level of pain and the issue has become managing this level of pain. The problem is I know the level of pain can be controlled but at a level of morphine which won't give me much in terms of awake time. You have to factor into this equation that my body is getting used to the morphine and so it will be taking more morphine now to control an unchanged level of pain. It’s not an easy equation.

I’d like to take a moment here for a shout out to a fellow lung cancer sufferer, Jonathan Piper, who is raising funds for the Roy Castle Lung Cancer Foundation via a climb of Mont Blanc next year. His blog is at... http://everydayamountain.blogspot.com/

I do think Pamela Stephenson should have won Strictly Come Dancing, but it was not to be.

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Not quite as bad as it reads...

2010-12-13T09:34:00.001+00:00

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.

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Tired of being tired and sick...

2010-12-06T09:12:00.004+00:00

Journal for Monday 29th November

Comically bad start to the week. It was time for my CT Scan this morning. For the first time since the diagnosis I had to drink the contrast fluid before the scan which is done over an hour between arrival and scanning, but I was promptly and very violently sick about three-quarters of the way through bucket of fluid presented to me. I told the staff, who just went ahead and did the scan immediately. Bearing in mind they can see on monitor screens whether or not there is sufficient contrast it makes you wonder if the fluid (or that much fluid) really is necessary or not. I see the consultant on December 7th.

Tuesday 30th November

Brrr. It's very cold outside.

I spent a good part of the day "virtually" attending the Social Recruiting Conference. A conference that actually eats it's own dog food in the sense that being all about social media it makes effective use of social media tools to reach out beyond the audience of people able to attend the conference in person. A really well organised event from what I could see on the streaming video, kudos to Social Recruiter of Crexia and to Alan Whitford of RCEuro. The main takeaways from the presentations I saw was "finally" some case studies about the ROI of using social media in recruitment....

(1) 65% of EA Games hires globally come through Social Media

(2) SAB MIller has saved between £1.2-£1.8m through direct sourcing with social media

(3) At Deloitte NL, 3 people hired directly via Twitter in one year and 18 via Linkedin. Aim to be first organisation in Netherlands to kill use of job boards.

I originally missed the following point but picked it up from Doug Shaw's blog feedback...

(4) Cummins has been using social recruiting, they have reduced cost per hire from £6k to £1.5k and reduced the time to fill a vacancy from 14 weeks to 7.

I didn't make it all the way through till the end of the day; so I am sad that I didn't get to see Bill Boorman on the closing panel but I understand there is a boxset of CD's being made available for purchase sometime soon. I'm pretty sure details will be available at the RCEuro website (www.rceuro.com). I'm looking forward to reading some of the blog output from today too.

Am taking a fair amount of "extra" morphine to control aches and pains and to enable a restful nights sleep. Am sure that it's probably contributing to stomach problems but it's difficult to find an acceptable balance... very difficult.

Wednesday 1st December

Feels like I am on the countdown to Christmas already. I guess the good news is that without chemotherapy I would not have lived to see Christmas this year. I now fully intend to see Christmas next year too.

We put our Christmas tree up today. The house looks great and ready for Christmas... I even like what my girlfriend calls the Christmas "tat". I suspect the house is more ready for Christmas than we are.

Thursday 2nd December

It's five weeks since my last chemotherapy. Mentally I am turning the corner, at least I'm fairly sure that this is the case. Physically I'm nowhere. My taste buds are not back but I can sense that they are still coming back, almost day by day. The vomiting has eased off but not gone. Unfortunately it's making me gun shy with food a little in the sense that I worry about what my stomach can and can't handle much more than normal. The fatigue is definitely the worst of my issues. I had a full on proper nap yesterday and also had my usual nodding off in the chair routine going the rest of the day. I was shattered when I went to bed just before 9pm. All I seem to do is sleep. That's really putting a dampener on what I am able to do. By now I was hoping to have had a day trip out to pop into work or something like that but there's no way right now I'm ready for that. By the time the journey there is done I will be wanting to sleep. At home I can do things in bursts, resting in between.

I have moved my journal from an app called Simplenote to Google Docs. In theory Google Docs has a bucketload of functionality compared to Simplenote, but the main reason is that in moving my journal from Simplenote to email I keep losing formatting and theoretically that won't happen going from one google product (docs) to another (gmail). I have the same access capability as Simplenote in that I can get synchronous access from all my web enabled devices i.e. iPad, iPhone and laptops.

We watched the Sorceror's Apprentice tonight. Cast led by Nicholas Cage, who can, in the right vehicle, be awesome, but in this he was just okay. This is a superb Disney story who do these family type films with great panash.

I have had the most awful late afternoon and evening with aches and pain. I have loaded up with Morpine and headed for bed.

Friday 2nd December

An exceptionally bad night marked by being woken up with aches several times. I spent an hour or so downstairs at one stage because I could not get comfortable in bed. Took yet more morphine to get the pain under control. Managed to use a bit of the time productively by beginning to put together a Christmas card list. I guess that is one thing there is kind of no reason not to be on top of this year, other than general procrastination, which has kicked in a bit I guess. The simple reason being that I am beginning to resent the dates that mark the passage of time for the obvious reason that each marker brings "that date" closer, or at least the thoughts of "that date". I know that if I read back in my journal I went through post chemo pain before I bounced back and that is what I am experiencing now but it's slightly worse this time than last time and lasting longer. It has been mentioned that perhaps I should prepare my mind ready for feedback from my consultant, post CT scan, that my tumours have grown. As my girlfriend has said, that's not really the issue. The issue is how long a pain free period will I get and what is the quality of life I will have during that time.

Finally cleared level 1-12 of Angry Birds after weeks of failure. Finally gave in and looked up the solution on YouTube. There is a video that shows you exactly how to beat the level and get a high score. What did we used to do before we had the Internet as a resource for problem solving? Mind you, there would not have been Angry Birds either, so that's alright then, isn't it.

Saturday 3rd December

After a couple of rubbish days I seem to have found a bit of energy today. It has been a couple of dreadful days and I can admit now that I was having some dark thoughts about what has been going on. It's very easy to fall into the trap of thinking any pain is the beginning of the end. That said, the pain has been hard to take, not especially in terms of depth of pain but the sheer persistence of it. It’s like a nagging toothache in the sense that it’s just there all of the time and it’s all that you can think of and there is no respite from it and you’d give anything for it to just stop and why is this happening to me. An incredibly difficult internal circular argument.

The X Factor very hard to call tonight because performances are being affected by illness. I guess I haven’t changed my opinions about the top of the table and that really unfolds next week at the final. The issue is who is going home. My call would be Mary and Cher to be bottom two with Mary going home. I’d prefer Cher to go home but if the judges vote then they will keep Cher as the more likely to sell a few records to the record buying public.

Sunday 4th December

Started the morning off quite well, having slept well on the back of the extra morphine I took last night. Felt like I have some energy so pottered in the kitchen a bit. Had some cheese on toast as a late breakfast / early lunch and lo and behold was promptly and very violently very sick. Oh joy.

I refuse to let that stop me today. I must get out, get some fresh air and enjoy a bit of time away from the house. If willpower will make me feel better then I will feel better this coming week.

Just back from a good trip into Northampton. I feel better prepared for Christmas than I have in years in terms of things like Christmas Cards (all purchased and a list made, aim to write them this week) and Christmas presents (a few to get but almost done). I have never left it to the stage where I'm running round like an idiot on Christmas Eve (since making that mistake once in my 20's) but I'm way ahead of my usual performance. The Christmas Market, which is what had drawn us into town, was frankly awful but the High Street wasn't too busy so we managed a good stroll around and even a Costa Coffee stop. I used up the balance on my W H Smith gift card that the gang at work bought me on a couple of magazines, one on iPads and one on websites. I'm going to build a website again, something I haven't done since my first days on the net and I'd like to try again. I noted on the iPad mag was a pointer to the fact that iPad 2 was likely to be released in January. Given the way Apple works that won't be gospel and the specification of the new device won't be confirmed until Steve Jobs actually stands up and confirms when he performs the launch.

I've been Scobleized on twitter. In other words Robert is following me. Robert is my favourite technical guru / journalist and I've read his blog since his early days as an evangelist with Microsoft back in 2005. In those days I used the phrase "being Scobleized" to refer to the fact that Robert linked to your website or blog, as it brought a tidal wave of traffic from the other people following him. It was known to crash servers. Semi-scobleization was a mention on his link blog, which also brought traffic but not as much as a mention on his main blog. Twitter won't have the same impact given the follower / following model and being just one of the 20,000 or so that Robert already follows. I'll report back if that changes (current benchmark is that I have about 600 followers). For those who laughed at this paragraph, the equivalent in your world would be a mention in your favourite newspaper by your favourite journalist.

I don't say much in this diary in respect of my care but it's about time I mentioned my girlfriend and acknowledged the help and support that she gives me. We've only known each other just over a year and in that time we've gone through my diagnosis with cancer and the trauma of my divorce. All this pales into insignificance beside the trauma yet to come and I can only imagine what that is going to be like. It's bad enough having to be around when I suddenly need to be sick and to have to cope with the sight, sound and smell of that. Whilst that should get better in the short term it's only likely to get worse in time. She has been my absolute rock and I could not have asked for more in terms of my care. The logistics of being diagnosed with cancer are a nightmare. Consultant consultations, chemotherapy sessions, scans, GP consultations, medication regime, support group meetings all add up. Then add in all the things I am not able to do because of the fatigue or other impacts of either the cancer or the chemotherapy regime. I'm never going to able to properly express how much all this support means to me, but you can take it from me that it means the world. What has happened to me is scary. It would scare anybody. She has made the whole journey less scary. The phrase "For that I will be grateful to my dying day" actually means something real to me and has real applicability to my situation.

Finally, the right result from Strictly Come Dancing. I thought Ann was very gracious in defeat, well done to her. Given that the Strictly result is democratic to the extent that it's entirely driven by the audience vote then Ann had every right to hang in there and enjoy getting through despite the misgivings of the other participants. I guess the overarching issue is the extent to which the show is only a dancing competition or it's a dancing competition plus an entertainment and reality TV show in which popularity plays a part in the outcome. The biggest issue is the extent to which the people who believe it's purely dance don't accept the other factors. If they did you wouldn't, for example, get stories like those in today's papers suggesting that the remaining participants had put formal complaints to the BBC management.

More complaints reported in the papers today. This time it's the X Factor participants letting off steam about Cher and "what a little mare" she is. Actually these stories ring true, maybe not to the extent to which they were bigged up by the journalists, because in truth they validate something I have been figuring out for myself. Cher comes across potentially as nasty piece of work besides some of the other contestants past and present who have been such genuinely nice people. I hope Cher, therefore, doesn't make the final although I fear she might. My top three firms up therefore as Matt, Rebecca and One Direction. Tonight I'd like Cher to go, but it could well be Mary.

I guess I could see that coming. Simon voted for the artist he thinks might make money. I think he might live to regret that. Felt very sorry for Mary, she’s played her hand well and I, for one, wish her lots of luck.

Posted via email from stevenewson's posterous

Christmas elves in Northampton...

2010-12-05T13:47:00.001+00:00

Sent from my iPhone

Posted via email from stevenewson's posterous

Forgot to post this street artist photo from trip to Shakespeare country...

2010-12-05T13:43:00.001+00:00

Sent from my iPhone

Posted via email from stevenewson's posterous

People parking their cheap cars on our street....

2010-12-05T13:41:00.001+00:00

Sent from my iPhone

Posted via email from stevenewson's posterous

Social Recruiting Conference... #srconf

2010-12-01T03:02:00.001+00:00

I spent a good part of yesterday "virtually" attending the Social Recruiting Conference. A conference that actually eats it's own dog food in the sense that being all about social media it makes effective use of social media tools to reach out beyond the audience of people able to attend the conference in person. A really well organised event from what I could see on the streaming video, kudos to Social Recruiter of Crexia and to Alan Whitford of RCEuro. The main takeaways from the presentations I saw was "finally" some case studies about the ROI of using social media in recruitment....

(1) 65% of EA Games hires globally come through Social Media

(2) SAB MIller has saved between £1.2-£1.8m through direct sourcing with social media

(3) At Deloitte NL, 3 people hired directly via Twitter in one year and 18 via Linkedin. Aim to be first organisation in Netherlands to kill use of job boards.

I didn't make it all the way through till the end of the day; so I am sad that I didn't get to see Bill Boorman on the closing panel but I understand there is a boxset of CD's being made available for purchase sometime soon. I'm pretty sure details will be available at the RCEuro website (www.rceuro.com). I'm looking forward to reading some of the blog output from today too.

Posted via email from stevenewson's posterous

If it's all the same to you I reserve the right to be pissed off...

2010-11-29T14:16:00.001+00:00

Journal for Monday 22nd November

A busy day for me. I just wish the vomiting would stop. It's got to the stage where I'm questioning the value of the sixth chemotherapy session. I was in the best shape I have been since diagnosis just before the sixth round and right now I feel like crap. I know the conventional wisdom is that the side effects are cumulative so I should give it at least four weeks, and probably five weeks, before I start to question the recovery but I am just so fed up with it. In my heart of hearts I know that the sixth chemotherapy session will have bought me more than the two or three weeks it is costing me now but I reserve the right to be pissed off about how long it's taking me to get back on an even keel if it's all the same to you.

I've cooked today for the first time in ages and by cooking I mean started with ingredients rather than something from a packet or can. It's only a mince stew and dumplings but it's a massive step forward for me. The only fear is that my stomach will let me down. Time will tell.

A visit today from two of my oldest friends. I go all the way back to my first days in the Post Office in London, some 25 years ago, to recall my first encounters with Stuart & Ruth. One way or another my career was closely linked with Stuart throughout my 14 years with the Post Office. It was great to catch up with them, neither of them seem to have changed that much since I first met them. They are wonderful people and great friends.

Tuesday 23rd & Wednesday 24th November

The fatigue is really hard to cope with this time. I have quite short bursts of energy; typically first thing in the morning, then around lunchtime, then around teatime / early evening. What this means though is that I'm sleeping late morning and again early afternoon for a couple of hours each time. I'm enjoying the periods when I am awake and able to do a bit of work even if it's a bit of housework or walking the dogs or whatever but I'm frustrated by the periods of sleep.

Thursday 25th November

A frustrating day with my Sky TV installation. Recordings have been covered in interference for a couple of days and the box has started switching itself off at random times. Also some channels are reporting that the box has no satellite signal whilst others seem to be fine. I did a bit of trouble shooting after some research on the net and then soldiered through a call with technical support. I don't know why these people can't accept that you have already done some of the checks they want you to perform. I know the argument is that they have procedures to follow but frankly that is exactly what is wrong with customer service in this country. If you don't empower your front line to resolve problems to the satisfaction of the customer then you are asking for trouble. If you set up a regime of fear where your front line is instructed to follow a set of procedures which they circumvent at their peril then don't expect your customer service to be rated very highly. Yes, you may have high closure rates on cases, but with due respect, you are measuring the wrong thing.

My stomach is slightly better and the fatigue marginally better. My left thigh is aching from a fall on Tuesday morning. It didn't bother me yesterday but today it is aching quite badly. It was so bad it forced me to return home after about 250 yards of my walk today. Very bored with life at the moment but realise I am not too far away from being able to do a few things, hopefully.

Friday 26th November

It feels like lots of waiting for things to drop into place at the moment. Unfortunately for me, waiting equals boredom. Boy does the mood round here need to change a bit. I want the old upbeat me back so badly I could scream.

Saturday 27th November

Not a bad nights sleep. I went to bed quite early and as a consequence I woke up the first time quite early. I was uncomfortable and didn't quite know what to do with myself. I tried sleeping on my right side, which I haven't been able to do in months and managed about three hours of deep sleep, after which having had the relief, I was able to sleep again on my more usual left side. An interesting development, will have to try that again.

After a bit of light at the end of the tunnel, the train emerged and hit me full on this morning. Fatigue, vomiting, falling asleep in my chair. My mood is slightly better but my physical condition is not matching, at least so far. Had some pretty weird dreams last night and to be honest I think because I worked through some bad news stuff in my sleep that's what has helped towards the lifting mood today. Time will tell if it's the start of a more upbeat me coming back into play. I have a CT scan on Monday. I was going to attempt to go on my own but the bad weather is encouraging a more conservative approach and the need to be helped.

Fell asleep about 11am, woke up at 2pm. We went shopping for food, a good trip round Tesco but ran out of steam almost immediately after.

The X Factor is getting down to the wire now. This weekend and two more to go. No reason on the basis of tonight to fundamentally revise my predictions. Wagner to go please. Matt to win, my only fear is his song choices are geared towards the older end of the audience, but boy can he sing. Rebecca, a truly talented vocalist, to come second. My fear for Rebecca is that nerves will overtake her. Cher or One Direction to come third. The eviction tomorrow should be Wagner but I'm guessing the tactical voting is still in place. Therefore Mary & Katie to be the bottom two. Mary to go home.

Sunday 28th November

Having had the pop at the Sky Call Centre, let me by contrast, offer praise to the Sky Engineer who came round to fix the problem. Within minutes he'd decided to replace the box, accepting on face value the problems that we outlined, and within about 15 minutes the new box was installed and we were good to go. It will be nice to have the TV back to normal.

I was right about the bottom three in the X Factor, but wrong about the order. Katie, knocked out immediately, gave a gracious little farewell. Much more to her than Aiden who got his knickers in a twist when he was voted off. I'm guessing the judges will now vote to dump Wagner unless they are scared of the fallout (retribution) from the judging public.

Well done, the judges didn't bottle it, so Wagner has finally gone. I'm surprised that Simon commented on the theory that tactical voting has been happening, that might come back to bite him!

I need to start thinking more about Xmas. Have the approximate shape of my plans but need to start to firm these up a bit further. It feels like it's too early but it's sure to come round really fast now.

Posted via email from stevenewson's posterous

29,000 opportunities for earning extra money.....

2010-11-25T11:27:00.001+00:00

Do you know of anyone looking to earn a bit of extra cash in the New Year? A range of temporary full and part time roles are available to help make the 2011 Census a success.

There are over 29,000 Census Collector roles available in over 2,000 locations across England and Wales, so there is a great chance of finding work close to home.

The census will take place on 27 March 2011 – it takes place once every 10 years and provides a snapshot of the nation, so it’s a fantastic opportunity to be part of something special.

Census Collectors contact householders to collect completed census questionnaires and assist where required. There is the choice of hours - 15, 25 or 37 hours a week, depending on availability, and work will last from 6 to 8 weeks.

Help us spread the word - please tell your friends, families and colleagues and direct people to apply at www.censusjobs.co.uk

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Two weeks in the tropic of cancercorn...

2010-11-22T08:09:00.001+00:00

Journal for Monday 8th November

Slow start to the week. I've finished the course of steroids so I'm now pretty much down to my basic post chemotherapy medication routine; basically morphine and folic acid. I'm also on a short course of anti-biotics as I seem to have a minor eye infection - left eye is a little red in the corner and keeps leaking fluid which feels like and probably looks like I'm crying but I'm not.

I have a few visits lined up for this week. Am looking forward to them. This week is somewhat the calm before the storm. Next week I fear I have some difficult decisions to face, decisions I am not ready for, nor necessarily equipped to make. I am afraid because this is territory that has broken my spirit before. There is a horrible nagging doubt hanging over me because I cannot see even the short-term future of my health.

Tuesday 9th November

Panic over. I have had a Rolling Stones tune in my head for a couple of days which I couldn't quite remember or bring all the way back into consciousness. And, no, don't ask me to sing it, I have more respect for your ears. Found it finally this morning... "Gimme Shelter", what a great track! [Yes, it's the theme to Call of Duty - Black Ops]

Really enjoyed the Spooks end of season finale. And it was a finale rather than a cliffhanger, which is a better way to play it to my way of thinking, better than leaving us all wondering if someone shot or buried alive is going to make it from one series to the next - presumably in some cases it's a factor of the contractual negotiations with the actor - if they ask for too much money they run out of oxygen in the script, ask just right and miraculously the oxygen flows and they live. That's a bit cynical of me, but I wonder if there is a grain of truth to it. Thinking about it, Harry is in the cliffhanger role - will he survive the review or will he be thrown out for having given up a state secret. I wonder if I will be around to find out.

Wednesday 10th November

Super useless week continues. Trying not to feel sorry for myself, because that is just so unattractive and frankly a waste of time and energy. The missing link is what to focus on instead of the things that have been dragging me down. I am still in the zone of being fearful about what is coming and in some senses the funny part is that the fear is not about dying so much as it's about the unknown. Unlike most, who don't have time to think about the unknown, all I have right now is the time to think, which is not necessarily a good thing.

Wonderful visit from one of my most long standing friends. We spent a great hour or so catching up on recent events and what is going on in our lives. My story, of course, predominantly about the cancer. Sad to hear that someone I haven't seen in quite some time has a brain tumour.

Thursday 11th November

I am clearly somewhat better than I have been earlier in the week. Not back to my best yet but I feel that there is a little bit of gas in the tank. My back pain is pretty bad and I wake up most mornings feeling very stiff across my lower middle back. I'm hitting the pain with a bit of extra morphine just before bedtime. The issue that causes is that I'm a bit groggy or sleepy in the mornings. I'm worried that the pain isn't going to go away because it's the underlying tumours causing it, but I don't know if I'm making a valid connection or not. I'm fed up and frustrated with all the not knowing.

I'm not as past the fatigue as I was hoping. I have spent the morning in a haze again; falling in and out of sleep as I've sat in my chair. And I'm so fed up with it. I want it to be over and done with.

Friday 12th November

A busy day for me. If I was fully fit it probably would not seem like much but for me it was an "on the go" day.

Visit from a very special person today. I am blessed to have the very best of friends. The mark of a good natter is that time passes far too quickly and it's hard to remember what the topics were but you know you had a good time.

Saturday 13th November & Sunday 14th November

Marked by sleeping lots and vomiting more than considered normal in polite society. Indeed joke of the weekend was to create a list of places I have vomited in and therefore left my dying mark upon.

Feeling steadily more uneasy about the burden of my divorce and how I am going to cope mentally with it all this coming week. I'd make some joke about it being like a creeping cancer but that's not wholly appropriate under the circumstances, LOL!

Strictly Come Dancing still being spoilt by Anne Widdecombe, for the record nice lady, awful dancer. X Factor top two still Matt then Rebecca. If extending to a top three then tactically I think One Direction probably have it over Cher (more girl voters than boys). Was not sorry to see Aiden go, he really tortured his save me song, but marginally surprised to see him go before Katie. I thought Aiden's snippy, snotty attitude did him no favours once the vote was announced.

Monday 15th November

D-Week is here. Divorce Week. Pain and suffering ahead!

The legal conference with my barrister started the week. The system is grossly unfair when you are dying. The legal profession could do with taking a good hard look at how it works today and how it should work. The problem as I see it is a shortage of advocates for one of the groups of interested parties. We keep dying! How inconsiderate of us!!!

Tuesday 16th November

I was hoping for a couple of days off from divorce issues but no such luck. There always seems to be some complication that takes time to work out how to handle and then respond. I suspect my ex is not going through any of this aggro and I really need it to be over very soon.

Yesterday I was able to go through the day without sleeping, today has been a return to the "bad" old days of sleeping the day away. I went for a specific nap in the afternoon, but still kept falling asleep in the chair either side of that.

Wednesday 17th November

A relatively quiet day and just as well, because yet again it's been all about sleeping, although I'd call it more snoozing than sleeping. Popped to the shops this morning but got about 500 yards and had to get out of the car to throw up. Charming. As it looks like I have to go to court tomorrow I only hope I can avoid something like that if I am called on.

Thursday 18th November

My day in court. and a result. I am divorced and can finally put that all behind me and get on with my remaining days. It was an exceptionally long day of hanging around but it was worth it to get to a full and final settlement. My decree absolute is in effect and will be in my hands within five working days.

Managed to be sick in the car on the way home and then again once I got home. Not pleasant, and frankly getting boring.

Friday 19th November

Visit from best friend today and managed to get some jobs from her to keep me occupied next week. Strangely I am looking forward to it in the sense that chemotherapy is over, I should be starting to feel stronger and I am getting my life back to something like normal and there should be an absence of divorce stress from my life. I know I am going to have problems with energy levels but not as bad as this week hopefully. If only the vomiting would stop!

Saturday 20th November

A rough nights sleep. Having difficulty finding a comfortable position to lie in.

A difficult day, as my girlfriend would say. It's almost like the real me is somewhere else, taking a holiday, leaving this random bloke with zero personality who she doesn't know and who is being sick from time to time. She deserves a medal for putting up with me.

The X Factor was interesting. A not so good performance from Matt, and Cher came back strongly after a string of poor performances, Rebecca was as strong as ever. One Direction appeared to have some tuning problems. None of this changes my long standing predictions of Matt to win and Rebecca to come second. I'm wondering though if Cher will do enough in the last few weeks to beat One Direction to third spot. Wagner just so has to go home. Doing medley arrangements is giving him the opportunity to mangle many songs rather than just one. And he is absolutely delusional about his level of "talent". The judges seem reluctant to put him right, they need lessons from Craig Revel Horwood. Better week for Mary this week so my guess for the bottom two would be Wagner and Katie. There is some speculation that there is a lot of tactical voting going on in favour of Wagner to piss off Simon Cowell; if that is the case then Katie and Paije would be my bottom two.

Sunday 21st November

Another lousy start to the day. Started okay, but rapidly overcome with nausea and feeling sick. Getting awfully tired of this now. This is my time and it's the only time I'm going to get and I won't get this time back so I need to start feeling better real soon. I know it's only been three weeks and yes, I'm expecting a lot but that's in my nature.

It looks like my 50th birthday is going to clash with the Royal Wedding as the speculation appears to be for the couple to get married towards the end of April. Should help keep my birthday a low key thing - I've always hated being the centre of attention for things like my birthday.

Been to Ikea and Asda this afternoon. Thought I had managed to escape without being sick and promptly vomited in the car on the way home, fortunately into a sick bag. Tired and bored of the inevitability of it. That said I have been a bit more with it mentally today. Going to try and have a quick power nap for an hour to get through this evening without falling asleep in the chair. That's the plan anyway.

The X Factor bottom two was a bit of a surprise. First surprise that Wagner was not down there. And then that Cher was. I suppose once Wagner was not there, Paije was not a great surprise to me. Of the bottom two I would have sent Cher home, based on an awful "save me" performance but I can see why the show would send home Paije.

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On the slow boat to recovery...

2010-11-08T09:32:00.001+00:00

Journal for Monday 1st November

Sleep. Sleep. More sleep. Probably the worst fatigue that I've experienced. The day disappeared in a blur.

Tuesday 2nd November

Well, with a good nights sleep I feel a little better this morning. Not great but definitely more with it than yesterday. Have a gassy stomach which makes me feel a little uncomfortable but I'm hoping this will pass. Trying to work out what to do today, without success.

Great visit from close friend from work. Am clearly not back to my best yet because I felt tired very quickly, but it's great to see people or speak to people and feel connected to things outside the bubble of the house.

Wednesday 3rd November

Not best nights sleep and I have hit the part of post chemotherapy recovery where I don't know what to do with myself. I need to be careful not to overdo things because the gas tank isn't filling up properly and I didn't rest well towards the latter part of the night. I was up quite early with a little bit of energy then quickly exhausted myself and slept again.

My mind is a mess at the moment. I can't quieten it and it feels like peace is a long way away. I have feelings of anger but can't seem to express them. I have feelings of frustration but what can I do with them? It all feels a bit pointless. Managed to get out of the house for a quick trip to the supermarket to stock up on cheese on toast. How sad is that. I'm consigned to Fortisips meal supplements and cheese on toast. What's the point. Got back home and without warning was violently sick. Oh joy.

Spent a while working on a task this afternoon / evening for work, only to lose the project file due to a technical hitch. Luckily only a side of A4 but it was good, thoughtful output and I was definitely annoyed to lose it. That has caused me a bit of restlessness so I've got up in the middle of the night to re-do the work. In some senses I am glad from a point of view of state of mind to have done that and in other senses I can't believe I've just done that. I was always kind of like that before all the cancer stuff so perhaps I am behaving more normally that I am giving myself credit for.

Thursday 4th November

I seem to be stuck in philosophical mode at the moment, and probably spouting utter tripe, but it seems to go with the territory of post chemotherapy recovery. Something to do perhaps with the fact that I did my degree in a subject spelt only marginally different from philosophy. That really doesn't wash either does it. So that must be pure claptrap too. What is true is that I'm subject to the standard hierarchy of needs which aren't by any means being met, in the sense that I don't feel safe, and the result is mental discomfort. In an abstract way it's an interesting form of mental torture I wouldn't wish on my worst enemy.

I feel that a lot is going to be asked of me over the next few days and certainly few weeks and that I am just not up to it. I know it's only a week since my last chemotherapy but I expect so much of myself, I always have. I'm so disappointed with myself over the amount of sleeping I am doing. It's emotionally painful every time I wake up in the chair, wondering where another couple of hours has disappeared too. I wonder what others are thinking about the extent to which I am just a useless burden.

I don't think anyone will be so keen to read my drivel this week. I know I wouldn't want to digest the sheer amount of negative energy it contains; can you imagine a book load of this tripe, LOL. I'll just pop it on the blog next week and run for cover.

Friday 5th November

The nature of time is on my mind. I guess I have an inkling why, but our human relationship with time is bothering me. Why does time pass so fast when you need it to crawl. As far as time is concerned I can't bring myself to believe I will be dead in less than a year. That seems so harsh, having gone through the trauma of chemotherapy for four months (I had to go back and check that, but this has been four months end to end). It's just struck me that this is the first time I have had to face death. I haven't been there, at the very end, for death in my family. I wonder now if that's helpful to my state of mind or not. It's another bone to chew on mentally and wind myself up with I guess.

I'm deleting more of this drivel that I am keeping at the moment. It's really to late to be concerned if others think I'm totally mad, everyone has the power not to read what I write. Nevertheless the drive to self-edit is compulsively high.

Saturday 6th November

For some reason the mental self torture seems to have eased off a bit this morning. It might have something to do with finishing the course of steroids, although that's somewhat counter intuitive. I had a reasonable nights sleep, although I did have to have a morphine supplement before sleep finally came, and woke with a modicum of energy which is just beginning to run out at close to lunchtime.

Apart from my stomach playing up I'm having a reasonable day. Emotionally I'm in a bit of no mans land. The uncertainty is the problem, but what can I do about that?

No reason to change my X Factor predictions. Matt to win, Rebecca as number two. Matt does need to get away from songs written for female vocalists but once he does I am relatively confident he is going to waltz it. He was a little lacking in confidence last night compared to Rebecca, and that could, in the end, reverse my one two.

The bottom two positions are, for now, the more fascinating territory. Wagner should have gone before now. Mary is just about clinging on. Aiden is just not my cup of tea, Katie does not seem to be the cup of tea of the rest of the country. I think Cher has shown us everything she's got and it's just not enough.

Sunday 7th November

I can't remember the last time I just gave up the bulk of the day to the Sunday papers. And there you go, the middle of the afternoon has arrived and I'm just putting down the last of them.

Finally managed to get synchronisation for iBooks to work between iPad and iPhone. I kept reading that it should just work, like Whispersync for the Amazon app but it never did. I kept consulting the web, as I would do for any similar problem, but honestly what I was able to find was not clear or not that immediately helpful. The answer lies so it seems in the application settings on each device and ensuring that in those settings synchronisation is switched on. For the sake of clarity and for the record if someone comes across this answer through a search, I'm talking about the device level settings, then into the applications, the iBook application and then switching on synchronisation.

It was the wrong result in the X Factor; but it's going to feel wrong now on a weekly basis until Wagner goes. Pretty much the same argument applies to Strictly, substitute Ann Widdecombe for Wagner. And in the great scheme of things I very much enjoyed the final part of Downton Abbey. There is one thing that get's me these days when a good series ends and the announcer comes on and says.... blah, blah, blah, back next year. That's not a lot of good to me, now is it? I felt the same seeing the final Harry Potter film being held until July 2011. That's a long way off for me, I hope I can make that milestone!

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Some days are better than others....

2010-11-01T08:29:00.001+00:00

Journal for Monday 25th October

Got off to a pretty ropey start to the week with an upset stomach followed by a bout of constipation which, fortunately, cleared by mid-morning. Walked the dogs and popped out to little Tesco. Boy do I have a glamourous life.

Started one of my hobby purchases from yesterday, an Airfix model of a Spitfire. Commenced operations with a bit of painting. The paint they use these days seems pretty good, better than I remember anyway. I'm taking my time because I have lots of time but also to see if I have the patience to spend the time wisely and get it right. We will see.

Received email that I really didn't want to get and has made me pretty upset, spoiling what was a good few days of upbeat mood. Oh well, such is life. What was it I wrote the other day? Oh, yes, the other shoe dropped. Big style!

Tuesday 26th October

The air fix modelling is actually going better than I thought it would. I have obviously developed a layer of patience that I didn't know I had. The damn thing actually looks like a Spitfire and I haven't dumped any of the parts as too fiddly.

Off to a better start this morning. Looking forward to visitors today and twitter "show and tell". "Show and tell" sounds better than teaching and is probably closer to the mark of what is going to happen.

My iPad stylus arrived today in the mail so I tried to do a bit of artwork with it. My other hobby purchase at the weekend was a step by step drawing book from "The Works" which was on a massive reduction in price. My first effort was an eagle which has turned out to look more like a dead parrot (as one kind friend put it) than an eagle. That said it's probably the nearest thing to artwork that I've ever managed. I need a stylus that's got more of a pen like nib. Might need a trip to Leicester and the Apple shop.

Popped out to get sugar and milk from little Tesco before visitors arrive. And they are out of sugar. How pants is that!! How can a Tesco shop run out of a staple like sugar? Makes no sense given the way they operate on technology and daily stock fills. I sound like a grumpy old man, LOL!

Twitter "show and tell" went really well I think. I did get a round of applause from my audience of two. I thoroughly enjoyed myself and my guests appeared to really appreciate the effort I had gone to. It certainly made my day go well. It's almost 4pm and I'm just kind of winding down from it and about to sit down with a well deserved cup of tea and my gadget magazine. I feel like I've been in the zone which I was talking about last week. I ought to see if I can offer the same course to a couple of colleagues, seems a shame to waste the preparation on one delivery. My guests also asked if I'd look at doing something similar with LinkedIn. That is definitely something I can look at after my chemotherapy session on Thursday.

I know that I really have to do it, but I am so not looking forward to this round of chemotherapy. I think anyone who's had five sessions would probably have the same mixed feelings that I have. On the one hand you know that you need to do this as it's the best thing for you medically and the payback is the life extension it buys. The downside is that you know what's coming in terms of side effects. It's like standing up waiting to be run over by a truck. Which reminds me of an "It's a Knockout" game that used to make me roll around on the floor with tears of laughter running down my face. It was the game where the victim, wearing a blindfold, pushed a punchbag on a long rope at human targets set on plinths, guided by a team-mate shouting things like left, left, bit more left, fire. All well and good for firing but the hapless victim then has to stand there, arms open wide, unable to see because of the blindfold while the punchbag comes back and almost flattens him. He knows it's coming, he knows it's going to be a shock and that it's gonna hurt but he stands there and takes it anyway. That's how I'm feeling about my final session of chemotherapy!!!

A difficult conversation with Mum last night. Whilst she is not very religious she's convinced herself that all I need is faith and I will come through this. I guess we are at polar ends of this issue. Mum is at the faith end of the argument and I'm at the reality end of it and we need to meet somewhere in the middle. My attempt at the middle ground is my fight to beat the prognosis and give myself as much time as possible. Unfortunately Mum wants to believe that my fight will overcome, thus her argument is that essentially there is a miracle in my future. There is no middle ground she can reach for or that I can help her towards if she insists on maintaining her current beliefs. That's potentially going to make it hard for us later on down the line.

Wednesday 27th October

On the news this morning one of the lead stories was a guy with either prostate cancer or testicular cancer who has had 67 chemotherapy treatments. That must have been hell on earth. Makes my whinging after six sessions look pathetic, although I suspect it wasn't 67 overnight sessions.

A busy day of appointments, starting with blood test first thing. Had a nice chat with the nurse, although she was on the side of not pushing for the final chemotherapy session if you thought several weeks of recovery were not worth the payback in terms of life extension. The unknown of course is what is the payback in terms of life extension. Who could possibly know that with any degree of certainty other than my oncologist perhaps and then it's only an educated guess. So although my position remains that I'm not looking forward to this final round of chemotherapy, I know I just have to face it and get on with it. I do believe that it will give me more than the 4 weeks it's going to take out of me. I have to believe that, I have no option now. And I have some faith that my oncologist would have steered me away from it if it was the wrong thing to do. The other killer argument is that I will never reach a point where I'll be saying I wonder what would have happened if I had taken that last round of chemotherapy.

Meeting with my solicitor about putting my affairs in order and then on to see my oncologist. The meeting with the oncologist is the one in the schedule I always wonder about because he really has nothing to tell me as we have no new scan to review. At least I know he isn't going to drop my mood with another comment about improvements, or lack of, in the state of my tumours. I wonder if there is anything he can do for my taste buds, stomach (vomiting) or the constipation (caused by the morphine). This far in and having raised the issue a few times I suspect that there is nothing more he can do.

Not much to report from oncology appointment other than the Doc said the constipation is likely to be the anti-emetic I'm on called Ondansetron, which I will be coming off post chemotherapy. This is really great news if it's correct and given that we have always thought it's the morphine which I won't be coming off anytime soon. Chemotherapy six is definitely on tomorrow.

I have been hankering after some pease pudding for while and finally found some in Morrisons so stopped on the way to the oncology appointment to pick some up. Had the best tasting meal I've had in ages as a result - Ham & fried eggs with chips and pease pudding. How very northern!!!

Was pretty exhausted from being on the go all day without a nap. So although I felt dreadful at having to postpone a visit from an old friend today it was probably the right move. The annoying bit is I spend loads of time wishing I was a bit busier and then I get days which are just non stop.

Thursday 28th

Chemotherapy day six. Up early to make flasks of shaved ice to bring with me to the hospital. I'm using my Little Snowie less and less of this as time goes on, but I've definitely had my money's worth out of it.

Arrived for my chemo in plenty of time but my room wasn't ready so had to wait in one of the rooms for day patients. Finally got into the room and needle inserted. The nurse could not get the drip to work properly so after some messing about the RMO came to resite the needle promising me that this would hurt. It didn't. The nurse then came back with a vitamin injection for the bum. That was ruddy painful.

For some reason the day is dragging. Tomato soup and a roll for lunch which I promptly threw up. Now feeling sorry for myself. Just want the day to be over. The afternoon just disappeared on me in a haze. Fell asleep until woken by visit. Fell back to sleep and slept through the night with the exception of disturbances to change the banana bags. The treatment finished about 4am, the needle removed but back to sleep until about 5:30am.

Friday 29th

Woke up at around 5:30am feeling cold, clammy and sick. Spent the rest of the time waiting for my lift home retching without actually being sick. Felt pathetically grateful just to get out of there and head home. Got unpacked and poodled around for a bit trying to wait for my stomach to settle a bit and to be tired enough for a nap.Had a hot shower, put on clean clothes and then napped on and off through the day. Feet feeling very cold so I am wearing two pairs of socks. Again the day feels like it's disappeared on me.

My best friend has dipped her toe into water with Twitter and Blogging after the "show and tell" from earlier in the week. Very proud of her and a little bit proud of the help I was able to give to get her started. And then she up and wrote her first blog post as a tribute to me. You can read the post she made here...

http://heatherkitto.posterous.com/a-tribute

I wrote a tweet to say that at the end of the day we are defined by the friendships we have made along the way but that only goes part of the way to say how much my friendship with Heather means to me. I am not ashamed to say I cried when I read what had been written. There are many acquaintances that one makes in a lifetime but true friends are hard to come by and I have been very fortunate. I do have some wonderful friends who have been here for me from the moment my news got out. I hope you all know what a difference your support means to me and will mean to me over the coming weeks and months; and with a bit of luck, a following wind and my mum's forecast miracle, years.

Saturday 30th

Sleep cycle pretty shot from all the sleeping at hospital and possibly being back on the steroids. Anyway up at 2am-ish for a bit and wide awake at 5am-ish. Feel quite tired but surprisingly my head feels less mushy than I recall at this stage in previous cycles. Wonder if it will last? Lots of falling asleep in the chair during the day.

Had yet a further evening nap but got up in time for Strictly and X Factor. On the X factor I don't think my favourite had his best week, but Matt still did enough to get through to next week. My second favourite, Rebecca, was stunning. And Cher finally showed some of what she has promised but so far failed to deliver. Interesting that she had to drop the rap to do so! Wagner and Aidan were my least favourite acts.

Sunday 31st

Have a feeling that fatigue is likely to be the order of the day and desperately hoping that my mood doesn't drop. Clocks have gone back, fortunately I only have a couple round the house that need to be done manually. I'd like to go to the Apple Shop in Leicester and see if I can sort out a decent stylus but other than that there isn't much that I have in mind for the day and frankly, the stylus could wait.

Yes, fatigue definitely has a grip.

Ended up with a short trip to the local garden centre, more for the poodle than wanting anything at the garden centre. Back home, more sleep, some dinner, falling asleep in the chair. Feeling at a very low ebb, partly because I know how rotten the coming week is going to be. Time for bed.

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iPad app reviews - Splashtop Remote and StreamToMe

2010-10-26T14:25:00.002+00:00

If you are a dedicated iPad person I want to highly recommend two apps which significantly extend it's functionality.

First up is Splashtop Remote. This app gives you control of your PC from your iPad. It allows you to play your audio and video collection on your iPad without having to load the media to the iPad. In other words it streams your multimedia files from the PC to the iPad. The app is remarkably low priced compared with other apps which provide this type of functionality such as Logmein Ignition.

My only slight wish list issue would be the ability to zoom in and out on the remote screen especially when trying to operate small controls. I found myself occasionally teeing things up on the PC to make life easier so that all I had to do was connect and hit the play button to watch the film I had already decided I wanted to watch. In this sense I was taking advantage of the streaming function but not particularly the remote control aspect of the app. Not exactly behaviour consistent with the design principle but needs must etc etc.

The second app is StreamtoMe. This app can be used on either your iPad or iPhone. In a nutshell this app allows you to stream your multimedia collection from your PC to your TV. The first thing you need is a free app installed on your PC called ServeToMe. This permits the PC to serve up media files to the iPad or iPhone. On the iPad you connect to the PC app over your ŵireless network, connect your device to your TV using a component cable and hey presto you can serve up your iTunes library or your video files from your PC and play them on the TV. Again a remarkably low priced app for the functionality provided.

ServeToMe is a bit fiddly to setup manually, you need your PC's IP address and you have to give permissions to the folders on your PC that contain your music and video files but it's a one-off process and only takes a minute or two. StreamtoMe I found to be entirely intuitive to use, very simple and straightforward.

These are two exciting apps at a great price that give you control over your music and video libraries and the capability to play your files where you want them.

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My first attempt at iPad artwork

2010-10-26T10:13:00.001+00:00

Sent from my iPad

Posted via email from stevenewson's posterous

From the story of the blues to the sunshine in my life

2010-10-24T20:36:00.004+00:00

Journal for Monday 18th October

Woke up this morning with a serious case of the blues. No real idea why it hit me this morning. Was also in bit of pain this morning so took additional morphine which causes me to keep dropping off to sleep in the chair which feels a bit demoralising because it makes me feel unable to get anything done and unable to contribute and by extension just a burden. Does that spiral of negative thinking make sense? The fact that I recognise what's going on is a step in the right direction but it's also not a solution. The sad bit in all this is that there isn't a solution to what is wrong with me.

Felt steadily better as the day wore on.

Not sure if I should continue with the journal. I won't stop writing but I'm just not sure if a daily recounting of eating cheese on toast is worth it.

Tuesday 19th October

When things aren't going well I have a saying along the lines of "I'm waiting for the other shoe to drop". It was a feeling I couldn't shake that something was about to go wrong. I've been feeling like that for a few days now. I just want some peace of mind. I can't even see what it is that would make me feel that much better or even sufficient at least to shrug off the feeling of helplessness. I need to find my happiness mojo.

My mum has been in a nursing home for several years. She had a stroke and when my Dad passed away she was found a place not far from where my brother lives. She spends most of her days sat in her room and I have to say remains more cheerful about that than I seem able to achieve at present, although I'm currently more physically capable than she is. I shall have to ask her how she keeps her spirits up, although I know in advance that part of the answer is that sometimes she gets depressed about it. Nevertheless she does seem able to shrug that off most of the time. She is always telling me to cheer up.

Had a long chat with Mum, and it seems for her the secret is watching TV and listening to the radio. Not sure that could ever be the trick for me, but glad it works for her. Mum was having one of her better days, stress free as she described it.

Had a long chat with best friend. Great to catch up with the gossip from work. There has been quite a lot of turnover at my office, I'll hardly recognise the place.

Wednesday 20th October

It's proving to be a tough week. I can't shake the sense of impending doom I'm feeling and find myself crying last thing at night and first thing In the morning. It was suggested to me today that I should think about speaking with someone, a qualified counsellor to be precise, who is experienced in talking to people with terminal illness and their families. It had never crossed my mind that there were counsellors who specialised in this field, don't know why because I'm totally aware of counsellors who work with the bereaved, and it makes sense that counselling is available both before and after.

I feel sad in part because my plan was to beat the cancer, or at least the prognosis with happiness. It feels, when I drop, that I'm failing in my goal, that somehow I'm dropping the ball. I must try to snap out of this but I need some goals, something to do with my time. Some way of feeling that I'm not spinning my wheels. Part of me wants to write a book, I feel like I could write but I don't have the plot of a novel in me and I don't have enough material to write a non-fiction book about something like personal productivity or mind mapping or PowerPoint.

An old friend was due to come round to see me today but has come back from holiday with a virus. It's the right decision because the last thing I need in my condition is to pick up an infection of any kind - with my immune system shot to pieces by the chemotherapy. We've re-scheduled for next week. I miss my friends and wish I could get out a bit more. I can't wait to get to the end of post chemo recovery and perhaps get out and about a bit. I'd like to get into Maidenhead and see the gang from work. I work with a terrific bunch of people and I miss them a lot.

Thursday 21st October

I'm finding it hard to get wound up about the cuts which are all over the news, the newspapers, the TV and my blogs. Possibly because the impact on me is going to be minimal but only because I won't be around by the time they bite. A bit selfish of me I suppose but this is one time in my life when it does make sense to put myself first. Feeling marginally less blue today than I have for a couple of days. Managed to get out into town under my own steam for an hour this morning. I guess I am coming back, finally, from the last chemotherapy session. Did a few chores and treated myself to a greasy spoon breakfast. Bought a chicken for dinner on the way back home.

Friday 22nd October

Feeling a bit better in myself. Slept well. Still have the feeling I am spinning my wheels a bit although I did get wrapped up in trying to solve an iPad issue for a couple of hours this morning which felt good when I realised the time had just ran away with me.

Out of the blue I've slept a bit more this morning than I am used to from the pattern of this week. Not sure why that would be as I slept well last night. Best friend coming round next week for a twitter lesson. Feels good to know that people still think that I have something to offer. I always enjoyed teaching at work and wonder if that could have been a profession I could have entered at some point in my life. I always loved it when people in a class suddenly "got it" and understood what you were trying to get across.

Had a really good day doing some work getting ready to do a bit of a "how to" for Twitter. I feel much better and looking forward to putting my feet up tonight and doing not much watching some TV. I have an iPad podcast (This week in iPad) downloading from iTunes that will entertain me for an hour or so as well, but it's coming in really slowly. So that might have to wait until tomorrow.

Saturday 23rd October

Woke up about 3am and could not immediately go back to sleep so went surfing on the net and found a couple of elusive ELO related albums on You Tube. Spent a pleasant hour or so listening to a blast from the past.

Woken up for 7am to sign for a Parcelforce delivery. I guess that's what you call justice, having managed the original project to implement hand held scanning (and therefore electronic signature on delivery) for Parcelforce, although they have now replaced the original scanning devices. I wonder how different my life would have been had I stayed with them.

On 30 seconds of reflection I did the right thing for me when I made the move. The mistake was the first company I went to when I left, but who knew what it would be like, and I guess the whole saga was just part of the journey to where I (happily) ended up. Just wish I'd found my "home" earlier. Anyway, that's a whole other story, perhaps for another day.

As I have an extra week in the schedule before my final chemotherapy session (which is on Thursday the 28'th) I'm feeling pretty good at the moment and can almost sense my taste buds coming back to something like normal. Things are beginning to taste almost the same as they used to prior to chemotherapy starting, which holds out the hope that once I'm over the final session then my taste might eventually get back to something like normal. Until you lose your normal sense of taste you've no idea how much you feel on the outside of what everyone else is experiencing and how much we all rely on things tasting as we expect them to. My weight is coming back a little too, although I'm still considerably lighter than when this all began. I went to get my haircut yesterday and both the hairdressers remarked that I was looking much better than I did last time they saw me... which I think was fairly early in the chemotherapy lifecycle. It was also not long after an actual session of chemotherapy because I recall wanting to fall asleep in the chair from fatigue. So all in all both mentally, having found a few things to keep my mind occupied, and physically, because I'm getting over the last chemotherapy session, I feel like I am in relatively good shape. Looking back over the week it's amazing how much my underlying mood can swing in such a short space of time. I'm not out of the woods yet because I do still have the final chemotherapy session to go and the recovery from it to soldier through but it bodes well that I should be able to finish out the year strongly and in the best shape I could be in, under the circumstances.

I'm sticking with my X Factor prediction, Matt Cardle to win. For me he is the stand out act this year. I didn't like Rebecca's styling this week, her hair was awful, but what a voice, she's still my second choice. Both of my first two have great recording voices. I'd part with money to buy their records and I don't often say that about X Factor acts. Still not impressed by Cher. She promised a lot but hasn't delivered. She doesn't have the X Factor. Mary has turned into a one trick pony with the big ballads and she is losing confidence, not good in an industry that relies on confidence to perform. One Direction are just boring. Simon looks silly when he gushes on about them. Aidan turned in a disaster of a performance. What a poser. Time for Wagner to go home. Awful song choice by / for Katie. My guess is Mary and Wagner for the bottom two but I'm generally not as good as picking the bottom two as I am at getting the top two right.

Sunday 24th October

Up fairly early and feeling good. Today I want to get out of the house and do something, and by something I mean anything really. A few options are open to me including a visit to a local craft fair, a visit to Northampton Museum in town, and a trip to Stratford-on-Avon. I don't mind much which I end up doing, the larger target is just to get out of the house. I read a short article yesterday on the concept of "living in the moment". I'm still ruminating on it but I think it might be worthy of further investigation. It's a bit of a zen concept which I already have a bit of time for, in the sense that when I "teach" my little personal productivity session called "Inbox Zero" I talk about the concept of achieveing a "mind like water", a state of mind where you are ready for anything and in which you do your best thinking and problem solving, basically because all the rubbish you are normally thinking about is either dealt with or parked on a trusted list where it will be dealt with in due course, at the appropriate time, but in the knowledge that you won't forget about it.

Had a fantastic few hours out in Stratford. Just wandered round the shops, bought some magazines, and a couple of hobby type activities I'll talk about later if they work out. Battered Sausage & Chips for lunch. It was warm in the sunshine, cold in the shade but damn it felt good to be out. Obviously overdid it because I then spent most of the afternoon fast asleep in my chair, but who cares. Not I, not one bit.

I cannot generate any enthusiasm this year for Strictly Come Dancing, certainly at this stage of the competition. Last year was spoiled by John Sergeant hanging in until about week 6 when clearly in a dance competition he should have gone earlier. This year Ann Widdecombe has taken the "spoiler" role and frankly it's just tiresome. It's not even entertainment, which is how is gets excused by some commentators. I'm gonna give it a miss for a couple of weeks and come back for the later stages, basically after la Widdecombe has gone home. By the way no one should take this as saying I have something against Ms Widdecombe, you'd be completely missing the point of my argument.

If Cheryl can get away with miming her new single on the X Factor, does she have the credibility to judge people who have to sing live every week? Wow, Wagner got through the public vote. Is this a singing competition? That's exactly the same credibility issue as Ann Widdecombe on Strictly that I was just banging on about. And what is TreyC doing in the bottom two? She's good. I hope this was about song choice. Oh dear, she picked a turkey for the sing off. Does anyone else think John's hair looked like a mushroom?

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The story of my weekend...

2010-10-17T21:11:00.001+00:00

Journal for Friday 15th October

Awake quite early today and downstairs for a brew at 5am. Posted yesterday's journal and started one for today. I am in the home stretch for my personal target of a week's worth of daily journals to assess whether to continue in the same vein.

Really funny email from a colleague at work about a recent trip which didn't quite go to plan. Genuinely made me laugh out loud. Early decision to have Birds Eye chicken pie for dinner. There's a cunning plan involved in that choice... can I avoid another cooking disaster?

Am sat on the bed trying to work out what to get up to today. I want to dust the Wii off over the weekend and have some playtime, so I might prep that today. I have some syrup to make for my ice maker. But that's a kind of 10 minutes here and there over the course of the day job, so I will get to that anyway. Hmmm...

The day seems to have disappeared on me. Despite feeling pretty good first thing, the morning disappeared on me. I perked up a bit by lunchtime and pottered in the office this afternoon for a bit. Watched a film this evening and then a bit of reading on the iPad. What a glamorous life! Saturday 16th October

Woke up at the usual time, a bit groggy. Had a cup of tea, stomach felt really ropey for a few minutes. When it settled I took my pills, had a second cup of tea and promptly fell asleep again. Didn't wake up until almost 11:30, but felt the most refreshed I have in ages. It's like I have a bit of energy, a little bit of fuel in the tank. It feels, dare I say it, almost normal. I hope that it isn't tempting fate in any sense. I don't like to think of myself as a fatalist but sometimes in my darkest moments that's what I think I might be. There's only one way to find out. I will take on the day and see what happens!

So far, so good. NIce walk this morning, now trying to work out what to do for lunch. Feel more thirsty than hungry so I've had a Fortisips. Might risk something when we are out. Feel like a trip to Northampton, don't want to waste time on a journey as such to get anywhere - the gamble being it's looking dark and it might rain and Northampton isn't a covered shopping centre as such. Somewhere like Milton Keynes is a bit further but all under cover. Then again there is Ikea.

Had a great afternoon out in Northampton. Was a bit of a grey, rainy day but I felt good and it was just fantastic to be out and about. Bought a couple of puzzle type magazines which had a bit of an unemployed / hospital stay feel about it, if you know what I mean but I've already had a good hour or so just disappearing into a couple of logic puzzles. I'm kind of interested to see if they will keep my attention or not. Also bought a couple of technology / iPhone mags - will be interested to see if I can find any new apps for the phone, it's been a while since I've seen any recommendations on any of the blogs I read regularly. For some reason I really fancied a roast pork sandwich for lunch, you know, the kind of hog roast job you get at country fairs. For some reason I thought there was a wagon doing them in the market square at Northampton but I'm either wrong or, being kind to my memory, they were not there today. Didn't fancy anything else but we decided to go my favourite diner on the way home. And lo and behold, on the menu is something called a pulled pork sandwich. Boy, that hit the spot! Couldn't finish the whole thing, but that's just the state of my appetite. I enjoyed every mouthful of what I did manage to eat. With cheesy chips and beans to accompany it, great dinner!!!

I see that a WHSmith ebook app has been released. Have downloaded and installed the app and also downloaded a free book to have a look at the reader functionality and quality. I think this is really good news, an app to give the Amazon book store a run for it's money - for example they appear to be running a promotion on the Millennium Trilogy books which are currently cheaper than at Amazon. Some competition on price will be a great thing for readers of ebooks. The reader itself is adequate to the task, although I can't tell if it has the same ability to synchronise across installations as the Amazon app. Overall I recommend the download.

Heard nothing on the X Factor tonight to change my mind, my top two remain Rebecca and Matt. I think the show (and for show read Simon Cowell) would prefer not to turn out another black female vocalist from precisely the same genre as Leona Lewis and Alexandre Burke. So my money is on Matt.

Sunday 17th October

Had another good nights sleep. That's two in a row, long may it continue, although it makes me wonder if there's a downside payback for it somewhere - probably the return of the constipation. Food of no interest this morning so I've substituted in a meal replacement. Planning to go for a walk to in part try out my northamptonshire pub walks guidebook I bought on the cheap the other week helped by the Red Laser app for the iPhone. Not even planning a full walk as unsure if I have the stamina but we can use the map to just walk a section of a route. I've downloaded the YouTube video of Randy Pausch delivering the Last Lecture. If you haven't heard of this, Randy was a US University Professor, who died a couple of years ago from pancreatic cancer. The Last Lecture was delivered when Randy thought he had about 2 months to live. The main theme is about realising childhood dreams. The lecture is in turns funny, sad, poignant and heartwarming. Definitely worth watching.

Back from the walk and knackered. Managed about a couple of miles (or what felt like it) and turned around and came back to the car. Walking is not easy because it feels like I have lost both muscle mass (in weight) and muscle tone, so it feels like I am having to work extra just to walk normally. I'm almost having to will my right leg to pick up - and it's probably why I felt like I was falling over my own feet when I was out in town yesterday.

Of the bottom two, probably the right result in the X Factor and Strictly. Simon Cowell gets to crow that the only two groups left are the manufactured ones he put together at boot camp. I can't get particularly worked up about the result because all we're doing is arguing about who goes home first from amongst the losers. Wagner and Widdecombe should have gone by now, but let's face it they aren't going to make the finals. I suppose the gamblers and the bookies get annoyed, but who's worried about them?

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Journal for Thursday 14th October

2010-10-15T04:57:00.001+00:00

All the Chilean miners have been successfully rescued. What a great party they are having in celebration, by the looks of it. The country has really got behind the rescue and they deserve the spotlight.

Wow! Some people are never happy! Today I seem to keep falling over complaints on blogs about the blanket nature of the coverage of the Chilean rescue on Sky and the BBC, to the exclusion of all other news. Spent the morning falling asleep in my chair, apart from a quick trip out to the supermarket. Productive though, managed to get everything I needed on the list. This afternoon I have been a bit more alive and managed to spend a couple of hours in the office which have resulted in me feeling a bit better in myself. Managed to get to that "in the zone" feeling where I was doing a few things which felt useful, including solving a fairly long standing annoyance with my Chrome web browser. Found some useful presentations which might help things along at work and some PDF files that I've parked in my Dropbox to read later on which might give me a few ideas. I'm thinking that it might be time to get my own domain and install a wordpress site or something along those lines. A technical challenge to an extent but only because it's not something I've done before. I will research it more over the next few days to see if I really want to take that on.

Playing with mp3 tunes.com, which provides a 2GB free mp3 locker (to upload mp3's into) and a free app called Airband to stream those mp3's to my iPhone or iPad. I have a bunch of audiobook mp3's where this might be a better solution than the iTunes approach. Anyway, will have a bit of light relief experimenting with that. I guess the advantage is 2GB extra space on the iPhone and iPad for music as the locker takes strain, the downside is that the playback might be patchy on a poor network connection. It should be fine at home on the home network, away from home it's a gamble. I will test out further next chemo day in hospital to see how it does on a 3G connection.

Bugger. I burnt the pizza. Well, not exactly burned but it was a bit dark and crispy. That's two cooking disasters in three days. I promised yesterday to explain how to move documents into applications on the iPad. I found a simple tutorial on how to move documents from your PC or laptop (the device which has your iTunes application on it) into the Pages application (on the iPad). It will only take a minute or two to follow the richly illustrated example and the important thing is to understand the principle... It could be any App that has the capability and for document you can read "any file in the format or formats that the App can use". So for the Pages App it could be a word document (.doc) or for VLC app I talked about yesterday it could be an avi file or for GoodReader it could be a PDF file. Anyway here is the tutorial...

http://www.simplehelp.net/2010/04/03/how-to-import-documents-to-pages-on-your...

I blogged this out separately because I thought it worth it, but here is my solution to the Chrome / PDF problem I have been having... Are you a Google Chrome user? Having trouble viewing PDF files? This has been the major annoyance of my experience with what I have found to be a much quicker browser than Explorer and I finally ran into the fix today. In the browser go to: chrome://plugins/ and enable the PDF viewer. And that's all it needed. Here is the background on the Chrome blog...

http://blog.chromium.org/2010/06/bringing-improved-pdf-support-to-google.html

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Journal for Wednesday 13th October

2010-10-13T21:05:00.001+00:00

Woke up to some really good news for a change on the BBC; with the first of the Chilean miners coming up from 69 days trapped underground. Despite the view that the cage would be a tight fit, it looked to me to be quite spacey, although I suspect that coming up the tunnel was a bit claustrophobic, even for people who spend their working lives underground. I wonder how much post traumatic stress will be involved. For the first 17 days with no contact they must have wondered at times if there was any hope left.

Watched Ed Milliband's first PMQ's. I thought he acquitted himself well. He certainly wasn't humbled by David Cameron, who of the two of them came across as the most uncomfortable in their own skin. Immediate reactions were also quietly positive. I suspect that Ed is going to have a field day adopting a fairness agenda. It's a fairly easy target in an environment of cuts to identify a raft of the cuts to label unfair, particularly when you don't have to publish an alternative to be picked apart by the government.

In my distant past I worked for almost 15 years for the Post Office. Privatisation seems to be back on the agenda although I haven't a grasp of the detail so difficult for me to comment in full. Frankly I would worry for any commercial organisation that considers buying a stake in Royal Mail to be a wise investment. Nevertheless when I see people like Billy Hayes spouting his union style claptrap it makes my blood boil. Dinosaurs like Billy are why the Post Office is in the mess it's in ( although not the only reason to be sure). I'm never quite sure why management did not sort out the organisation years ago to achieve a fair days work for a fair days pay. Today it's an organisations of contrasts with pockets of old fashioned, unproductive, union run locations and some modern, productive but unhappy sites. Almost as an aside it's worth remembering that Alan Johnson is a former CWU General Secretary.

A sleepy day. Woke up, slumped in my chair, at about 5pm. Would hope to be awake now for the evening to watch some TV and have a bit of dinner. Nope, fell asleep again and woke up when I poured the remnants of a cup of tea over myself. Damn it, feel like an idiot when I pull stunts like that. It makes me feel like I'm definitely heading backwards rather than making forward progress, particularly because stuff like that was pre-chemo behaviour. Now I know why I have gone steadily downhill over the course of the day. I went to get my evening pills to discover my morning pills were still in the cup untouched. What a plonker. Not much I can do about it now other than take my evening pills with a top up of quick release morphine. The Apprentice is underway. The girls lost tonight and the bitchiness came out in the Boardroom, big style. Karen Brady was right, the girls were so unprofessional it was funny. Road kill was my comment off the cuff. They all could have gone home for me. My advice was to calm down. Clearly Lord Sugar does not like it when the aggro levels are high and real companies don't function that way. "Gobshites" don't go far. I'm surprised at the decision but I don't think any of that final three will make it far. Wrote a couple of iPad app reviews...

Simplenote & Dropbox - would recommend these two apps to anyone as cloud based storage, note keeping, document carrying applications and probably the only two you will ever need in this area. I have them on my work pc's, home pc's, iPhone and iPad and they allow me to carry around almost anything I am going to need, including things like PDF's

VLC - allows you to load up files directly via the app section of iTunes and being VLC plays media files in almost any format (I was already a fan of the VLC app for PC's). Very handy for any videos downloaded from the web e.g. from YouTube and various webcast formats plus any avi's you might have. Certainly saves having to convert files between formats to try to get iTunes to play them. GoodReader - the Swiss army knife of document readers. Again you upload files to it via the App section of iTunes.

I know from experience that getting files into Apps is not intuitive. I'll try and find a link to a "how to" or I'll get some screenshots myself to illustrate. Something to keep me occupied for a bit tomorrow.

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Roary came home...

2010-10-13T09:28:00.001+00:00

In my role as Chief Happiness Officer at work, Roary was a mascot for a weekly players player award for a contribution consistent with our values. He arrived in the mail this morning for a visit...

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Journal for Tuesday 12th October

2010-10-12T23:43:00.001+00:00

I probably won't post this entry today as it's probably going to say naff all. That's because I have, once again, slept the day away whilst feeling exhausted when awake. Not my finest day. Feel less than a useful member of society on days like this.

Got up at about 5:30pm to try and have some quality time before bedtime. I've made a home made toad in the hole... but was promptly sick before preparations were complete. Hopefully that was a clear out and I can have some dinner later, but suspect it's just a sign of how fragile my stomach is right now. Anyway, will try a cup of hot, sweet tea and see how we go.

Everywhere I turn at the moment I am finding friends running into serious medical problems or those running into economic problems caused by the downturn and the coming "cuts". The mood of the country is changing from upbeat to decidedly maudlin. I want to live in a world where "it's great to be alive", but sometimes you get the feeling that the majority don't think that to be the case.
I loved the last words of Agony Aunt Claire Rayner, “Tell David Cameron that if he screws up my beloved NHS I’ll come back and bloody haunt him.”

Cooking disaster. My toad in the hole didn't work. Had to rescue the sausages and do them with some mash. Ruddy hell, I can't get one thing right at the moment. A friend wrote to me today to say that it upset them to see my words "before I die". My friend is struggling with the idea that I will die, still believing that the chemo will pull me through this. If you have read my writing you will all realise that the whole "will I die" issue does play on my mind quite a lot. I think my friend is in the same camp as my mother, sharing the belief that there will be a miracle. I'd like to believe but it's not really a matter of belief. The chemotherapy has certainly made an impact on my tumours but it hasn't made them go away. Eventually they will come back. Happy to talk about the philosophy of this with anyone but it is a philosophy argument rather than a medical one. If there is a fight it's about how long I get after the chemotherapy and that is the battle I'm in. My prognosis is a year. But what if I can significantly beat that. That's worth fighting for, so in my pragmatism, never think that I have given up the fight because I have not.

Fell asleep in my chair reading my book. Woke up feeling toasty and warm. Off to bed. But I guess I will post this journal first. Turned out I did have a few things to say today.

Sent from my iPad

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Journal for Monday 11th October

2010-10-11T21:22:00.001+00:00

Mentally a tough day to push through. A reasonable nights sleep but I knew before I really got going that I was not in as good a shape as yesterday. There is probably an element of having overdone things yesterday but I would not change a moment of the day for all the tea in China.

Spent most of the early part of the day drifting off to sleep. On one occasion I was sat in the office and must have drifted off just sat there. Woke up when I almost fell face forward into the laptop screen. LOL!

Finally seemed to turn the corner a bit by mid to late afternoon. And then late on an old friend came round for a visit. Was really great to see him. We talked about the cancer, about work and then got the iPads out for a good look at the Apps we both have. Quite liked the look of his Korg synthesiser app, but I'm not very musical and it was a bit pricy when I looked in the App store. It was great to spend a couple of hours outside the cancer bubble and I hope he will pop in if he gets up this way again. Back to having thoughts about "the point". Need to try harder to find something to keep myself occupied tomorrow in terms of contribution. I have an iPad podcast to watch tomorrow and I might get the Wii out for a bit, but those are time fillers rather than useful contributions. It feels like a whinge and probably sounds like one. No one should feel sorry me and ultimately no one will. If people do for some reason, they will vote with their feet and stop reading my writing and that's fine. I recalled today why I write this stuff. It's basically for my benefit and it's cathartic for me to work through my issues into the written word and compartmentalise them as a result. In other words the writing helps me to let go. It's partly just a record of the roller coaster I have been on since the diagnosis. It was partly about finding out if i could possibly write a book before I die and I think the answer to that question is probably no, although I will probably keep examining that. It was suggested to me today, twice, that I could write one. And the final reason is the more obvious cancer legacy - if just one person reads about the symptoms I was having and gets an early diagnosis then it will have been worth it - see my very first blog post about cancer.

Watched Spooks. Probably best TV series on the box at the moment but something not quite right about it this time. There's a lack of threads running and it all seems to be about Lucas. Even the Harry / Ruth saga has gone quiet.

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Trying a journal approach to blogging about cancer...

2010-10-10T20:36:00.001+00:00

Friday October 8th

Seemingly overwhelming support in the immediate reactions to the last post for a diary / journal format. I wonder if I am able to be that conscientious? I guess we will find out, I have banged on about how much I like the format for a while.

Shadow Cabinet seems to have caught the commentators out, at least as far as the Alan Johnson decision is concerned. Once you accept that one, the decisions on Ed Balls and Yvette Cooper make sense although I did laugh at the family implications of a married couple getting the home and foreign office briefs. Talk about home and away. My other thought was that they both get to keep their powder dry in the Shadow Cabinet on cuts, ready to take the Chancellorship in a future government. Alan Johnson taking the fire through to his retirement and taking it for "the team" is one way of looking at it, taking a slightly Machiavellian viewpoint. Alan does appear, on the face of it, underqualified. Osborne, on the other hand, is regularly referred to by City sources of commentators as a lightweight. Scary, isn't it. Worst financial crisis in memory and all we have is a lightweight being held to account by the underqualified.

Sadiq Khan is the worrying appointment, if this stuff was going to impact me in the long run. The new Shadow Justice Minister has a couple of stains in his reputation too many to be credible in that role. He comes across as a bit of a sleaze, and it's way too early for Ed Milliband to get caught out with that kind of problem. A touch of naïveté perhaps, although Ed has not shown himself so far to be susceptible to that charge. You'd be more inclined to say he's made of stronger stuff based on his track record.

The other reminder I got in response was that the constipation I have suffered from intermittently isn't caused by the chemotherapy, it's source is the morphine. Mentally I had been hoping the end of the chemotherapy would signal the end of the constipation but no such luck. Damn.

Saturday October 9th

A bunch of really nice supportive tweets, comments and emails in response to yesterday's posting. I sense that people really want to do the right thing but are not sure what the right thing is. Should they call, or let me rest? Come to see me or wait until I'm a bit better. It's really hard to advise on that too, I know I will feel bad if someone troops up to see me and all I do is fall asleep on them. Then again, that would hardly be the end of the world. It's funny how I still view certain issues through the prism of (pre-diagnosis) what would be considered normal. My life will never be "normal" again. This is all a bit deep for early on a Saturday morning. Had a real drop in energy until around late afternoon. As bad as it's been in terms of lack of energy for some time. Finally perked up a little to watch an episode of Come Dine with Me. Magic Kev was a good winner, I particularly liked his comment that we all need to show each other a little more empathy. He was the least tightly wrapped of the contestants by a mile. There were a couple of highly strung reality show wannabes on parade. It's X Factor season. The live shows started tonight. Can't believe Louis brought back Wagner as his wild card. And Diva Fever, c'mon Simon, get real. Based on the first performances my picks for top slots would be Matt Cardle and Rebecca Ferguson. Right now, if pushed, my money would be on Rebecca.

Sunday

It's 4am, I'm somewhat awake, and the meaning of life is on my mind, once again. The thought I have had is that... LOL.. fell asleep (the benefit of an app that straddles the phone and iPad, is that it's only the phone in my hand when I fall asleep like that)

Think I can just about remember, my thought was that "normal" life is just like my life with the exception that "normal" has a framework to keep my mind from thinking about the dying stuff. Normal has a bunch of distractions. I guess that's where eventually phrases like "wake up and smell the roses" come from - the self talk to ignore the distractions and focus on the important. I wonder if I need to read some beginners philosophy. Would not know where to start with that! I suppose there must be a "Philosophy for Dummies" book, I'll check that out later. [There is! Added it to my wish list, will queue it up for my reading list]

Before I forget to record it, without too much pain, overcame my post chemo constipation this morning. That's almost 9 days, although much of that time I have been on Fortisips rather than solid food. On the other hand I have shifted a fair amount of cheese on toast. My weight is fairly stable at 12st 8lbs. Would be good to get that back to 13st prior to the final round of chemo.

It's amazing how feeling a little more awake, a nice shower and a bowel movement put a whole different perspective on the day. Right now, in this moment, I feel surprisingly upbeat. It will probably be fleeting but the prospect of a good day is so tantalising.

It continues to be a good day. Took a trip to Bicester and the outlet centre, designer labels dripping up and down the road. Managed a good few hours out in the sun, a Starbucks with a ham and cheese toastie and bought a couple of shirts that were on sale. It felt really good just to do normal stuff. Came back and finished watching the first episode of Downton Abbey, which I found myself, unexpectedly, enjoying. Some intriguing sub plots.

Goldie sent home on Strictly. FYD sent home on the X Factor. No justice and the usual evidence that the public don't treat these shows as talent shows but as pure entertainment. Never know if that should bother me or not. I do feel sorry at this stage for people whose dream is ended before it would otherwise. Ann and Wagner, respectively, should have gone, but they won't win either. So, in the end, does it really matter that they hang on and entertain us a bit longer. My theory is that some viewers secretly enjoy the frustration of the wrong contestants getting through. And let's face it, I bet it's by a mile in the leading topics of conversation at work tomorrow (caveats apply depending on the office you work in). Simon Cowell knows what he's doing! A nice quiet evening, reading in front of the TV, capped a really nice day.

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An insider guide to chemotherapy...

2010-10-08T15:26:00.001+00:00

By way of an introduction I'm not quite sure why I wrote my blog post this week in the form of a journal. Possibly because I'm reading diaries again (Chris Mullin this time), partially an experiment, partly because I want to remember how this time through immediate post chemotherapy went so I can put it into perspective when I go through it for the final time, for now, at then end of this month. Anyway, let me know what you think....

Friday - Day 1 after chemotherapy session 5

Woke up feeling pretty nauseous, which has persisted all morning. I couldn't face dinner last night in the hospital and I can't see today being any better on this front, so I'll need to stay on top of my Fortisips drinks (meal replacements) if I can face them. Constipation hasn't been an issue yet, although I guess I'm anticipating this at some point. More information than people probably need to read about but it is the single most unpleasant side effect of the whole process. And I hate it. A lot!

Time has moved on to mid-afternoon. Not been able to sleep yet and must get a kip in before tonight to see if I can put my schedule back on a partly normal cycle. Hopefully the wierd dreams won't kick in so much this time, although they too seem to be linked to the chemotherapy and are worse in the early part of the cycle, just after a chemo session.

Slept for about 2 or 3 hours from about 3pm to 6pm. Got up to watch a bit of TV and have a shower. Had another Fortisips but it didn't go down very easily. Just gone 8pm, time to take my pills and think about going to bed.

Saturday - Day 2

Was up during the night a couple of times to go to the loo, but managed to pretty much go straight back to sleep. So slept through until about 6:30am and then got up to make a cup of tea. On the positive side I slept without the awful sweating and bad dreams I often get at this stage. Slightly less positive is that I still feel a bit nauseous and can't see solid food back on my agenda anytime soon.

Played on the iPad for awhile and then a sleep from noon until 2pm. Due a visit from stairlift people to give a quote. Not sure how I really feel about it, but if I want to prolong my time at home then I'll need to be able to get up and down the stairs if my lungs aren't up to it.

Wow, stairlifts aren't cheap are they! And bloody typical, the design of the house means that I either have a stairlift fitted rail side that has a trip hazard and therefore needs to be hinged or I have to have a radiator moved that's at the bottom of the stairs in order to have a wall side installation which will probably be the best from a design & space point of view. Decisions, decisions.

Coming up to 5:30 and have managed a little solid food. It was only a couple of pieces of cheese on toast but it felt good to get back in the saddle with solids.

Waiting now to catch Lee McQueen on Sky News which he trailed in his Twitter stream. Just saw the item, it's something to do with reality TV and is it the beginning of the end with the demise of Big Brother? A nice bit of exposure for Lee, he did well.

Oops, I left the grill on. Managed not to burn then house down. Not my finest hour, I need to be more careful.

It's 10pm and I'm still awake, alive and kicking. Managed a bit more food this evening watching the X Factor and kept it down. Food still doesn't taste quite right and I despair sometimes that it's never going to be quite right again. The only slight chink of daylight has been the occasional glimmer of enjoying food just before chemo treatments... the greasy spoon breakfast just before chemo 4 and the steak dinner just before chemo 3. Think I will take myself off to bed and try and read for a bit. Goodnight. Sleep tight.

Sunday - Day 3

Slept reasonably again. Up a couple of times but no trauma, bad dreams or sweating. Less good news is that then stomach feels a bit ropey again after a good evening on the food front.

Managed to get out of the house for an hour or so. Went to then garden centre near Althorp House and had a nice stroll around the shop. As I used it while there it reminds me to mention an iPhone app that has proven quite useful, called Red Laser. The principle is simple, take a photo of a bar code label, the app scans the photo and then looks up the item using a Google shopping search to find better pricing. Not something shop owners are going to think much of, but a really great simple money saving idea. The live example was a book selling for RRP of £7.50 found online for £1.50 (used) and £4.00 (new).

Have managed a couple of hours sleep. Now 4pm and got up to find the opening ceremony of the Commonwealth Games on the box. Mind you I seem to have intercepted an interminable speech by one of the organisers. Sigh!

Caught up with both episodes of Strictly Come Dancing and the X Factor. Surprised that Cheryl took Cher in what felt like the strongest category but totally unsurprised that Simon took both the groups put together at Boot Camp. That definitely feels like it's all about his ego, that he couldn't possibly be wrong and if those two groups get anywhere it's proof of his omniscience.

Stayed up reasonably late, had a bit of soup and got psyched up to go to bed. It's only 9:30pm, but I guess the fatigue is kicking in. I'm guessing that the steroids are keeping that at bay somewhat and probably means that when I come off the steroids at then end of week 1 then week 2 will be the worst of the recovery period.

Monday - Day 4

Slept as well as could be expected. Up reasonably early with a bit of energy, so have done a few chores, email and stuff. Filed some paperwork, written some cheques, paid some bills. The high life, eh! Gonna try and up the Fortsips a bit as I've lost weigh yet again... another six pounds but I can't afford to lose much more. I calculate I've lost 4 stone since the start of chemotherapy and 5 stone since my diabetic diagnosis a couple of years ago.

Managed four Fortisips and a couple of pieces of cheese on toast. Stayed up quite late and watched Spooks, which was quite good. Still didn't feel that tired when I went to bed at about 11pm but must have drifted off pretty quickly.

Tuesday - Day 5

Time, unfortunately, is just flying by. In a blur. Far too quickly.

Wednesday - Day 6

Another blur, this time mainly fatigue driven. Couple of nice phone calls late on when I seemed to gather a bit of second wind. Conservative conference is the main news backdrop on the TV, sadly for Dave Cameron he's not Winston or JFK. I'm finding party political strategy harder to take an interest in, now that I won't be around to be impacted by most of it.

Thursday - Day 7

Off to a reasonable start today, a few emails replied to, a couple of jobs jobbed. Started to prepare a modified version of my journal as a blog post. Wondering if people would like the diary format rather than a blog post format, or a mix. I know that I quite like reading the diary format. I enjoyed reading Alastair Campbell (and I'm sad that I probably won't be around when volumes 3 and 4 of the uncut diaries are published) and right now, among other things, I'm reading Chris Mullin's rather excellent account of his last days in Parliament and the demise of New Labour. Appropriate timing given that the Shadow Cabinet announcements should be imminent. Funnily enough there doesn't seem to be much strong opinion on who will get what role, at least from the writers I'm reading. Ed Balls strikes me as behaviourally inappropriate as Chancellor. His reported behaviour (by Blair, Campbell and Mandelson) isn't the standard one expects from someone aspiring to such high office (and let's face it, probably hasn't given up on the top job yet).

Friday - Day 8

Having enjoyed the more recent diary I have now started on Chris Mullin's earlier diaries from his days as a junior minister. I do find these books and this time frame (Blair, Brown, Mandelson, Campbell) fascinating for some reason. Wondering to what extent reading diaries has got me writing a journal (of sorts) without reaching much of a conclusion.

I was off to a pretty good start this morning energy wise but have come crashing down with fatigue again. Does not bode well for the weekend as I'd like to get out before I go any more stir crazy.

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If you've got this far, do leave me a comment if like the format. Or leave me a question, if there's something you want to ask. Most of all, give me a ring. I'm sorry I'm not always in a position to answer but sometimes it is everything I can do just to stay awake and I just don't have the energy, even for a quick hello. Hopefully I'm not too far away from the end of the fatigue roller coaster and getting some stability back. To know when I'll be awake and when I'm likely to be asleep doesn't sound like much but will be a big change for me.

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No significant change

2010-09-29T12:35:00.001+00:00

My head has been in a pretty awful place for the last week or so. Whilst I am afraid of what's going to happen to me, I'm feeling more afraid for those around me and what they might have to go through. It's an awful thing to even have to think about but pragmatically is it wrong to hope that when the time comes it's not a long drawn out thing? I'm trying hard to lift myself out of this mood now and get my head ready for the rest of this week. When it comes down to it, the fight is as much mental as it is physical. Ultimately the cancer will beat me physically but the key question is will it beat me mentally. I mustn't let it but there are days when getting there feels like an uphill struggle.

Following on from my scan last week, it was time to see the oncologist last night for mid-course review. The news is not as good as last time but my consultant's view is that it's a positive result. The radiographers view of my scan was "no significant change" but when my consultant challenged this view they seem to have come around to a slightly more positive position. The tumours in the lymph nodes in my chest are definitely smaller, there is evidence of new non cancerous tissue filling holes in my bones and my consultant believes that whilst the size of my liver tumours are unchanged this time the cancer cells are being killed and a kind of watery substance left behind (which accounts for the lack of shrinkage).

I won't say I'm not disappointed, because I am. I was definitely hoping for something significantly more positive. Perhaps I was expecting too much but following the 30% shrinkage of the tumours last time I was hoping for a 10% figure or something like that. Reflecting on the review the morning after I think my consultant was more positive about it all, certainly more than I was. I guess I sometimes forget just how far I have come since the treatment began. I was failing apart quite dramatically just prior to the treatment starting and I have reached a position where my quality of life is significantly better than it was. And that is what this is all about. There's no miracle cure for my ailments, the aim is to give me the best quality of life possible in the time I have remaining. Speaking of which, the consultant said he was not minded to change the prognosis he gave me last time i.e. 9 to 12 months.

We discussed continuing the chemotherapy and we decided to proceed with chemotherapy session 5 and to decide on round 6 when I see him in three weeks time. The decision on round 6 will take into account how bad the after effects from round 5 are; because as he's always told me the impact is cumulative and the sickness and fatigue are difficult and I'm finding it hard to get fully on my feet between chemotherapy sessions. My appetite hasn't really come back this time and I'm back into hospital for chemo 5 on Thursday. On the flip side I want to get every ounce of benefit out of the chemotherapy because once it's over, until the cancer comes back, there's nothing I will be getting from a treatment point of view.

In my last update I mentioned that I'd been to the Northampton Lung Cancer Support Group meeting. I've since found out that the original purpose of the group is to support the carers of lung cancer patients although I suspect that the line between the being for the carers and the patients is bit blurry sometimes. I've also been reminded that cancer patients can be a little shy, and despite what you might think, I can really relate to that comment. It is difficult enough to talk about cancer at the best of times and actually sometimes it's the last thing that I want to talk about. Anyway I've decided to try and attend the group when I can, although the next one might be difficult so soon after my next chemotherapy session.

On the iPad front I've actually had a sort of iPad crash in the last week which has meant that I had to restore the device from a backup which wasn't exactly recent. I guess we've all been there at some point with a PC, laptop or drive and I should know better. With an iPad there is not much that you can lose in terms of data but what there was to lose, which included the original draft of this blog post, I have indeed lost. This pushed me to look at my approach to the data that it's possible to lose on my iPad and as a result I've downloaded an app called Simple Note which allows me to create notes on the iPad but keeps a synchronised copy in the cloud and, a bonus, on my iPhone. It's free but ad supported, the ad is pretty unobtrusive so, so far, I'm pretty happy with the approach. The more I play with it, the more I like it. It's one of those apps that I would have liked even without an iPhone or iPad, a simple cloud based note taking and list keeping application, accessible from any internet connection. The only other thing I could lose is documents created in pages, numbers or keynote. I think my strategy here, as a minimum, would be to email a copy off to my gmail account after a working session.

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