State of mind

It’s been a long time since I last posted anything here about my treatment. Actually, it’s been a long time since I posted almost anything here. And I’ve been pretty distant and difficult to contact in the real world too.

I could make a series of high-minded excuses, but actually the truth is much less prosaic; after the latest series of updates from my consultants I’ve been struggling to come to terms with my current situation, trying to work out what to do next, and how. And fundamentally I’ve not been coping too well; I’ve been acting rather like the archetypal “rabbit in the headlights”.

Tuesday will be the 3rd anniversary of my original cancer operation. I’ve been fighting medical problems for almost all of that time, as well as the 6 months prior to that while I was being diagnosed. And it’s fair to say that I’m tired. I’m tired of the hospital appointments, the consultations, and of being prodded and poked, injected, bled, and scanned. Of being outwardly positive and cheerful, even when I feel depressed and negative. And above it all, I’m heartily sick of still not being well again.

And I feel guilty for feeling like that, especially when actually I’m one of the lucky ones who seems to be surviving his brush with cancer, unlike so many others.

If this were a different problem I’d take a break and come back to the fight refreshed. But there is no break with this; at the moment it’s my new normal. So I have to just keep on going. But unfortunately this also seems to be an inflection point in my treatment; I need to make some irreversable decisions on the direction of that treatment, and they all seem to lead to fairly disagreeable end points. Which is not helping much.

So, to the friends and colleagues I’ve not been in touch with for a while, or been short and irritable with, I’m sorry. I’ll try to do a bit better. And since, according to Dorothy L. Sayers, a “trouble shared is trouble halved”, so I’ll even try to post a bit more here too.

Sad news

I’ve not added many posts recently. In large part that’s because I’ve been watching from the sidelines as a friend and colleague has been nursing his wife through the final stages of her terminal bowel cancer.

Listening to how they and their family have coped together, and how he is now coping without her has left me deeply moved, and reminded me again that most of my daily grumbles are just that. Grumbles.

So the next time the broadband doesn’t work, or someone cuts me up on the drive to work, or the train is late, or any other of the innumerable petty problems that crop up in my life occur, I’m going to remember that at least I’m still fortunate enough to be here.

Normal service will be resumed soon, and I’ll probably also fill in what’s been happening over the last few weeks with some back-dated posts.

Half term break

I planned this last weeks vacation with my family on the spur of the moment nearly 9 months ago, more as a means of using up some of my accrued vacation than out of any real desire to take this particular week off as holiday. However, in practice I seem to have needed it more than any other vacation I’ve had this last year. I found the fortnight leading up to it particularly difficult, with a lot of travel, and consequent long days.

Add in the stress of recent developments in my health, and I’ve been struggling to cope. So it’s been a huge relief to spend a week away from the trains to London, the office politics, and the pressing concerns of my customers. Instead, I’ve been able to spend a week catching up on my sleep, recharging my batteries and spending time with my family. It’s reminded me of the important things in life.

I’m now looking forward to the challenges of work again next week, but it’s definitely tempered by the thought that I clearly no longer have the stamina to burn the candle at both ends, let alone while lighting the middle at the same time.

I’m going to need to improve my time management, prioritisation and delegation skills if I’m going to maintain a good work-life balance and keep my health intact.

National Cipher Challenge

For the last few years I’ve been lucky to have been involved on the fringe of the National Cipher Challenge. This is a marvellous competition designed by the Head of Pure Mathematics at the University of Southampton to get (mostly) secondary school children interested in cryptography, and through that, in mathematics.

IBM is one of the sponsors of this competition, providing winners prizes, and I’ve been lucky enough to be IBM’s representative at the prize-giving event, which is traditionally held at the National Computing Museum in Bletchley Park, near Milton Keynes. This leaves me in the wonderful position of being able to chat to all the winners (who tend to be really bright and interesting), listen to some great guest lectures, and generally have a great day out of the office supporting a very worthy cause.

Sadly I couldn’t make it to last years event, as the prize-giving was exactly a week after my main cancer operation, but I was delighted to be invited to attend again this year, and was determined to make it. However, I was a little worried whether I’d be able to actually drive that far, cope with the actual event itself, and then drive home again, so just to be safe a colleague arranged to be the main attendee from IBM just in case I had to bail out at the last moment.

On the day however, everything went really well. The drive up was fine, and I coped well with the event itself. I spent a couple of hours after that visiting my brother, who lives locally, which gave me a good opportunity to get a little rest before driving home again. And perhaps as a consequence of that, it was only towards the end of the drive home that I really started to feel that I was starting to reach the limits of my endurance.

So saying, I have been very tired today, and have been suffering some discomfort and pain; that probably indicates that I really was pushing myself a little too hard for this stage of my recovery. However, at the moment I have very little feel for what my limits really are, and I need to explore them now so I can set sensible bounds on myself when I restart work proper in a weeks time.

And anyway, it was a wonderful day out meeting up with old friends, and well worth the extra effort to be there. I enjoyed it enormously, and I’m already making a provisional booking in my diary for next year!

Running for bowel cancer charity

Andy McFarlane is one of my colleagues at IBM who has also fought his way through bowel cancer. He’s about 18 months ahead of me in his treatment, and this year he is running the New York marathon in aid of Lynn’s bowel cancer campaign, a small charity focused on raising awareness and early diagnosis of bowel cancer.

Andy was kind enough to spend time talking to me about his experiences of beating his bowel cancer just after I was initially diagnosed, which helped me to prepare myself for my treatment. If you’d like to support Andy in raising some money for a bowel cancer charity, you can make a donation via the Just Giving website.

Andy’s also reminded me of how enthused I was with the idea of entering the LiveStrong Challenge event in Austin (Texas) when it was suggested to me by Mark Cathcart. My surgeon was less impressed with the idea of me doing it this year, but it will make a great target for me for 2010, while also raising some money for some good causes.

It will force me to get some fitness training done too, which would be no bad thing either!

Full day in the office

Yesterday I was invited to a mini-conference in one of IBM’s London offices. Given my current health situation I’d probably normally have politely declined, but the topics were of interest, and the people who were invited to attend were almost without exception doing the role that I would like to transfer into when I get back to work. I’ve also worked with a lot of them over the years in one form or another, and they’re an interesting group of people who are always good to chat with. So this seemed like an ideal opportunity to catch up with what’s currently important at work, have a good chat with everyone, and find out what kind of opportunities they thought might be available in their area of the business around the turn of the year.

And I must admit, I had a fantastic day. I dropped the kids off at their bus stop, and drove up to London. As usual, it took about 90 minutes, but somehow although the roads were busy, I never seemed to get completely snarled up in the traffic. The journey went smoothly, I got a parking space right next to the office doors, and arrived just in time to grab some breakfast in the canteen.

I then literally spent the rest of the day running into and catching up with people, and having a great time listening to and debating the business, where it’s going and how we’re going to drive it forward. And I was completely amazed at the number of people who wanted to make time to chat to me about how I am, how my treatment is progressing, and when I’m going to be back in work. I felt really valued and missed by my friends and colleagues, which was most humbling. I only wish I could have stayed longer and talked with more people at the end of the day over “drinks and nibbles”, but unfortunately by then my energy reserves had completely run out, and I knew that the drive home would be tiring too.

So thanks to everyone who I saw and talked with yesterday. One of my concerns about being off ill for so long has always been about how difficult it’s going to be to reintegrate myself back into the world of work. My experiences yesterday have left me with no doubts that I’m going to initially find it quite physically demanding when I return to work, but that my friends and colleagues are all going to be there to help and support me.

I’m lucky to be able to work with such people.

The sound of music

My elder daughters both play piano and flute, and have the shared use of a piano and a flute between them. So far that’s worked out really well, but contention for the flute has been getting difficult, and is getting worse now that they are both starting to talk about joining flute ensembles and the (same) school orchestra.

Meanwhile our youngest will start junior school this year, and will also be offered music lessons. Fortunately she wants to play something (anything?!) different to her sisters, but this means finding yet another instrument for her. We’d been starting to think about what we could do about this, when as though by magic, everything came together this weekend. My eldest daughters godmother mentioned that she had a flute that she no longer used, which she was happy to lend to “J” long-term, and a clarinet came up for sale through our local church at a very reasonable price.

So on Saturday I went to visit “J”s godmother to collect her flute. I had a great time too… Kirsty lives just far enough away that it’s difficult to just pop in, so I’d not seen her in several months. We spent a great morning quaffing coffee and chatting about everything and nothing, before going out and grabbing lunch together. It was just like the old times. It’s hard to do things like that now that we’re all so busy with work and families, but this convinced me that I need to make an effort to spend more time with my friends – it’s too easy to let it slide for too long.

Meanwhile my beloved wife had been persuading talking to our youngest about the clarinet, and playing her some clarinet music to see if she liked the sound of the instrument. Fortunately she did, so by the end of the day we became the proud owners of a rather beautiful Yamaha clarinet, for an extremely good price. Her school offers clarinet lessons, so with a little luck we’ll be able to get her enrolled in those when the autumn term commences. We’d like her to learn the piano too, but with three piano players in the house now I’m hoping that we can at least get her started on that with some informal lessons from within the family.

Saturday evening and much of Sunday the house was filled with the sound of flutes as my two eldest tried to play some pieces together. A job for this week is to find them a book of proper flute duets to play. Meanwhile our youngest has started learning the fingering on “her” clarinet, and can already extract a series of notes from it. It occurs to me that when the kids finally start leaving home, it’s going to be very much quieter around here. I’ll miss it.

Putting the “Va Va Vroom!” back into life

My toy car got a further injection of work this afternoon when an old friend popped by to give me a hand modifying the brackets on the axle to make sure that they could no longer bind on the strut mountings. The end result from the driving perspective will be minimal – perhaps a slightly better ride over particularly poor road surfaces, but given that I tend to avoid those anyway (the suspension is set up for smooth roads and race tracks) I don’t see this mattering much.

It will however, stop the axle eventually damaging the struts, which apart from being a generally good idea at the best of times, also means that the nice man at the MOT station will be a lot happier with the rear suspension, and is therefore much more likely to give me the piece of paper I need to get the car taxed and back on the road again.

There are (as always with kits like this) a lot more things that need doing or checking, but most now need the car back on the road before I can progress them. For example; the speedometer had to be replaced with a new electronic one, and I’ve made up the mountings for the magnetic pick-ups and mounted the magnets on the propshaft. It currently works really well at the up to 5mph I can achieve on the drive, but I’m concerned at how well the magnets will remain attached to the propshaft when it’s operating at higher revs. Time will tell on that one, but if it doesn’t work out then the next attempt will be to introduce a slotted plate between the propshaft and the differential, and use a reluctor pick-up instead. More expense, and potentially another complete strip-down of the interior to get access, which would be annoying to say the least.

However, the next priority job is to get the car onto a rolling road, get the 3D ignition remapped, and re-jet the carburettors. The car is definitely running lean at low revs, and rich at high revs, and the response to a snap opening of the throttles is very “fluffy” which means the accelerator jets are out too. Finding a good rolling road operator who can cope with mapped ignition and carburettors at the same time is getting difficult, but apparently there is a good one over at Thruxton who is worth trying.

But first I need to get it insured, MOT’d and taxed though. That should keep me busy for the rest of the month.

Lo.ts o. hicc.up.s ag.in, las.ing all n.ght l.st n.ght!

Not a good night. Hiccoughs started around midnight, and didn’t really stop until nearly 5am, when I finally got to sleep. Of course, this doesn’t just affect me; if I end up hiccoughing all through the night, that means my wife doesn’t get any sleep either, and she still needs to go to work the next day. So I ended up in the lounge reading, and trying to drift off to sleep on the sofa. Thank goodness for recliners!

Still, it’s no fun spending the night awake, and then eventually falling asleep on the couch because of a 5 hour attack of hiccoughs, so lets hope this isn’t going to be a regular feature of this cycle. Though having said all that, I read nearly the first half of Lance Armstrong’s first autobiography last night, which is quite inspirational. “It’s not about the bike” talks about his early years, and his diagnosis and treatment for testicular cancer. So far, it’s a good inspirational read, by an inspirational character who talks openly about his predicament and how he overcame it. Recommended.

I also talked to a colleague this morning who has been through approximately the same treatment as me, 3 years ago. Harry was very helpful, and shared a lot of information about some of the things that have been starting to worry me about the treatment I still have to do, and in particular the reversal of my ileostomy.

Clearly we’re all individuals, and it’s not possible to say that my treatment will closely mirror his experiences, but understanding the amount of post-operative care that I’m going to need was very helpful; both very positive for the long term, but slightly worrying for the medium term. I had initially assumed the reversal to be a very simple operation – and indeed, it is for the surgeon. For the patient however, it involves a lot more post-operative care, particularly around the dressing of the wound than I had imagined. Unless that’s something that can be managed by my wife and I, then I can see that it’s going to involve more time off work that I’d not been planning for. Which is going to be very frustrating indeed.

The longer term sounds more positive, with bowel function likely to return to near normal in a relatively manageable period (months to a year or so) which sounds like something that I can probably cope with with some careful planning.

So Harry, when you read this, thanks for the call today – I really appreciated talking to you. Coffees are on me when I get back into the office and we can meet up, and I’m sure I’ll be calling you to talk more once the information you’ve given me has finished sinking in!

Great news!

Nick, the chap in the bed next to me at the NHS hospital who I struck up a friendship with has just sent me a text message to tell me that completely out of the blue he is to be released home tomorrow. Which is really good news indeed, as like me, he was going slightly stir-crazy.

We’ve arranged that I’ll give him a call early next week with a view to me popping around to see him for a coffee and a chat. He’s promised me a run in his Ford Mustang when he’s well enough to drive again, but I suspect for now we’re going to have to settle for more mundane pastimes. If nothing else it will be nice just to see him back in his own home rather than in hospital.