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.

End of statutory sick pay

It turns out that when I went onto long-term sickness, the government started paying a contribution towards my ongoing salary, reducing the amount that IBM has to pay me. This is Statutory Sick Pay (SSP) and is funded from my national insurance contributions. From my perspective, it’s completely transparent – my salary continues to be paid according to the terms of my employment, ie, I get some time on full salary, then a further period on a reduced salary, before (if it was eventually necessary!) being retired under long term sickness terms.

However, it transpires that SSP only lasts for 28 weeks, and in my case, will run out for me at the end of this month. At that point someone on long term sick leave would normally become eligible for various other benefits which essentially “take over from the SSP”. They must be applied for via Jobcentre Plus, who front the governments Department for Work and Pensions. So, to ensure that I don’t end up being overpaid/taxed etc, IBM requested that I apply for those benefits, and notify them of the amounts that I receive so that they can keep my pay and tax affairs straight within their payroll department.

Which all sounded simple enough. And immediately shows that I’ve never had any dealings with the UK benefits system before. I had absolutely no idea about how wrong I could be.

I started off by looking up the nearest Jobcenter Plus on Google Maps, which is in the local town, and drove in to present myself. It turns out to be the entire ground floor of a very large building, all decked out with little cubicles for people to have their meetings in, just like a modern bank. Except the it’s completely deserted. I am the only “customer” in the place. The staff are clustered together chatting. When I break in, I am then politely informed that they can’t do any of this for me in person. Instead I have to phone their helpline, which they give to me on a little pre-printed sheet.

I resist the urge to say anything I might later regret, and leave.

So I drive home, and call the helpline, on a nice freephone number. And I then spend nearly 40 minutes on a crackly phone line talking to someone about all the possible benefits that I might be entitled to, and they open an “account” for me with Jobcenter Plus, and initiate applications for all these unlikely sounding benefits on their computer system. And then I sit back and wait for the paperwork to arrive. Which it has been over the last few days, in dribs and drabs, a piece at a time, each in it’s own first class envelope.

The interesting thing from my perspective is that I know from a quick look on the benefits website that I am not entitled to the vast majority of the benefits that the lady on that original call seems to have signed me up for, as I earn too much, and have too many savings. And this is despite the fact that she asked me how much I earned & how much savings I had right at the start of our call. However, having now been sent applications for these benefits, they are clearly expecting me to fill them all in. Which other than being a waste of time, would perhaps be OK, if it were not for the fact that the application forms seem to typically be quite lengthy, and they want to know in great detail about all my and my wife’s personal & financial circumstances. They also want original proof for everything; birth certificates, share certificates, savings accounts, proof of house ownership, proof of employment and salaries, outgoings, dependant children, inside leg measurement, etc. Apart from the fact that I don’t have a lot of that stuff readily to hand, frankly, I don’t feel comfortable sending it all off to them in the plain brown (prepaid first class) envelope that they have provided.

Talk about leaving yourself wide open for identity theft and fraud, let alone the concern over it just getting lost somewhere.

So I decided to talk to the regional benefits office that is in charge of my “account”, which is based in Southampton, with a view to clarifying which benefits are actually worth spending any time on (I think there is only one, the “Earning Support Allowance”), and cancelling the rest. They have their own 0845 number, but no geographic number, which is deeply annoying to start with. It means I have to pay each time I call them rather than having the costs absorbed by my included free “geographic” minutes. And then, when I call that number I am connected to an Interactive Voice Response system, which forces you to pick an appropriate department to talk to. Except no matter which department I select, all their operators are permanently busy. At which point rather than queuing me up to wait for the next operator to become free, the system then terminates the call. In short, they have been completely impossible to contact during the last two days, despite my calling them whenever I’ve passed my study.

I have an irresistible vision of another large room somewhere with the staff all chatting to one another, while a couple of phones are always left off the hook in a corner somewhere.

And the most galling thing of all is that our tax pays for this ridiculous system. God help us.

Back to school

This is the first post for nearly a week; there are a mix of reasons for that, I’ve been more than normally tired and sleeping a lot of the time, and also when I have been awake I’ve been trying to get on with “normal life”, with rather mixed success, I must admit.

I’m the vice chair of my daughters school governing board, and Tuesday morning was the first time I’ve managed to attend a full board meeting since I was diagnosed with cancer. It was great to actually get back and take part in a meeting, and catching up with all that has been going on in the school in my absence. As you’d expect, they’ve been managing just fine without me, though it was nice to be welcomed back so positively. As expected, I collected some actions, including the task to produce an “investors in people” style report for the school; that may need to be targeted at the 2010 time-frame!

That afternoon was my youngest daughters sports day, so I also spent the afternoon at her school, watching the usual selection of egg and spoon, relay, sprint, and sack races. The children seemed to have a great time, and despite the weather being rather overcast, the rain held off until right at the very end of the afternoon, so everyone had a great time. Once the rain set in, we took the opportunity to spend some time looking through our kids work from this year, and chatting to their teachers. It amazes me how much the children actually do, and how early they start now. They seem to learn a lot more, a lot earlier than I did. I came away very impressed at the progress my kids had made through this year, and at the amount of effort that the teachers obviously put into teaching them.

Wednesday I spent the entire day asleep. Every time I woke up, I felt exhausted, and so went back to sleep again. I never seemed to get enough sleep, and the day just slipped by. Which was most strange.

Thursday turned out to be a beautiful day, and after so much sleep the day before I was feeling great, so I had a spur of the moment decision to go into the IBM offices to meet up with friends and colleagues, have lunch, an catch up on the discussion and comments on IBM’s decision to announce the closure of its final salary pension schemes. In the end I arrived in the office around 10:30am, and stayed until about 3:30pm; in between I caught up with loads of people (Tracey, Martin, Kevin, David, Dave, Dave, Kev, Adrian, etc etc etc) and managed to start reinstalling my laptop with the latest version of Ubuntu, and the core applications for operating within IBM. In the end, it was a great day, but by the time I left I was struggling to keep my eyes open, and once home ended up sleeping for the rest of the afternoon and most of the evening.

Friday morning my wife and I popped into Southampton and visited the new IKEA store. I’m glad we did so on a Friday, as it was busy even then. I can’t imagine what it must be like on the weekend – chaotic probably doesn’t even begin to describe it.

And today was the school Summer Faire. Which was fun, in a very wet, rainy kind of way. Still, its the first wet summer faire that the school has had in the last 15 years or so, so I guess we can’t complain too much. Turn out was probably down a bit, but we still had a lot of people turn up, and it was great to see lots of friends. I helped out on the sweet stall and the book stall, and tried my hand at being a salesman for an afternoon. I have to say I thought I did pretty well, in a street-hawker kind of way. We sold out all the sweets anyway!

And through it all, my chemotherapy treatments have been ongoing. My tiredness has been the worst I’ve known. I’ve had extensive blistering of the skin on the soles of my feet. And as usual, I’ve struggled to manage my ileostomy. But these are all things I can cope with. So its frustrating and annoying, but I’m still coping. And cycle 4 finishes on this coming Tuesday, with a week off to recover from cycle 4 before starting cycle 5.

Which I view as the beginning of the end of the chemotherapy, which leads to the reversal of my ileostomy. Bring it on.

Getting back to work – eventually

Today was the last day of my third cycle of treatment, and the last day of a week without chemotherapy drugs. To be honest, it’s an odd time because while I’m really happy to have made it through another cycle, and to have been having a relatively “easy” time off the drugs, I’ve got to get ready for the IV infusion tomorrow that marks the start of my next cycle. And I personally still find the needles quite difficult

However, this is a special one. This will be cycle four out of eight. The next fortnight marks the point when I’m going to be half way through my treatment. The doctors are really pleased with my progress so far, and I’ve apparently been coping better with the chemotherapy than most patients do. My last cancer marker test was also very low indeed, which is very encouraging. In short, it all sounds very positive indeed.

But of course, it’s not really that simple.

I’m tired. Not so much physically (though I am) but more mentally. This disease and its treatment just wears you down. Every day you use a little more of your reserves up to keep going. And every day you feel a little more diminished, a little less the person you were before. Of course, that also means that you’re a little more the person that you’re going to be at the end of the treatment. Because it’s becoming very clear to me that no-one comes through cancer without being changed. Staring at your own mortality changes you.

But in the meantime, one of my biggest problems is that I’m no longer working. And I miss the whole experience of working. From the friends and colleagues, the day to day deadlines, the coffee-machine conversations where you hear about all the interesting things that are happening, and yes, even the political intrigues. The good news is that my management are supportive of trying to find ways to get me more involved in work, but realistically it’s difficult when I can’t commit to any fixed schedule, and my abilities are blunted by the medications I need to take. But I was feeling very positive that with their support, we’d find a way to move forward.

But this week I’ve been able to talk about going back to work with each of my GP, my oncologist and my case worker from our occupational health department. And without exception they were all uniformly negative about my getting back to any kind of real work in the near future. They’re all concerned about my current levels of medication and tiredness, the likelihood that the treatment will get worse as it progresses, and that adding work & possibly stress to the mix will impact my recovery.

So the current advice from everyone is to concentrate on getting well first, and work second. Which is good advice, but still leaves me climbing the walls in the meantime.

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!

Man bag

The Ultimate Addons bag arrived today, and it really is small. Very small. There is barely room for the Aspire One and a few odds and ends. There isn’t really room for all the stuff that I normally carry everywhere, but it’s close enough that with a little more rationalisation, I think it will be just fine.

Being so small, it doesn’t look like a laptop bag which is good; there’s less chance of it being stolen, or me being mugged for it. However, it does look rather like a “man bag”; I haven’t decided whether that is good, bad or indifferent yet, but it’s certainly not a look that I’m used to!

In terms of packing, the things that are proving hardest to fit into it are the power supply/mains cord, and the ethernet/security cables. However, I don’t see any easy way to avoid carrying them. I suspect that coiling the cables in larger loops may help a little, though sadly the slimplug that I mentioned in a previous post doesn’t seem to exist any more, so I’m stuck with fitting the large UK plug in there too.

Smaller is better – reprise

Having been using the Aspire One as my main work machine for about 2 months now, I’m pretty sure I’m going to continue with it for at least the time being. It’s simply a much better fit with the kind of work that I generally need to do. Now, if IBM were to offer me one of those rather nice X300’s … well, that might be a different matter.

Back in the real world however, I’m currently transporting my diminutive little netbook around in a massive backpack. The backpack actually weighs more than the netbook. So it’s time to shrink the luggage to match the contents, and I’ve been looking for the smallest “laptop” bag that I can just fit all my everyday “stuff” into. In general I carry the following things around:

• the aspire one (obviously)
• a bluetooth mouse
• the power supply
• a mains cable
• an ethernet cable
• a kensington lock
• a couple of pens
• an A5 notebook
• my cell phone & its wired headset
• a couple of USB memory keys
• my car/house keys

At the moment I’ve found three candidate bags:

• The ultimate addons shoulder bag at £20
• The Solo Polytwist 11” Mini Laptop Mobile Office at £60, and
• The Pakuma K4 Messenger Bag at £30

At the moment the ultimate addons shoulder bag is the prime candidate, though it looks like it could be tight squeezing everything into it. However, at £20 with a 30 day return policy, I think it’s definitely worth a try. A colleague has also pointed me at this ingenious (if rather expensive) collapsible mains plug, which will definitely help with packing the ungainly UK mains plug into it. The only problem is, it has the wrong sort of IEC connector, so I may need to modify it somehow. I’ve dropped the manufacturer an email to see if they either do an alternative with the right sort of connector, or if its simple to replace the cord with another.

Fast, Faster, Fastest…

For the last couple of years I’ve been on a 2Mbit corporate ADSL deal. The advantage is that it has been funded for me (aka “it’s free”), and it’s fast enough for most of the things I need to do while at home, but the drawback is that it has no mail service, which means my family can’t easily have any email addresses. To solve this I simply set up my own email server on my home server. And then discovered that the entire IP address range for this service has been blacklisted by Spamhaus, which meant many people simply rejected email from my server on principle. In short, the IBM package was fine for me to use for IBM business use, but a total pain for the rest of my family.

This came to a head just before Christmas, and so I’m now in the process of migrating off the IBM deal and onto my own broadband package with Be Unlimited. They offer a rather nice “up to 24Mbit” ADSL2+ service for £20 a month, including a static IP address, no blacklisted IP address ranges, and proper reverse DNS support so I can associate domain names with the service. Best of all, my management have agreed to make a contribution towards my business use of it.

And today I got home from work to find that Be Unlimited had delivered my new “BeBox”. This is a rebrandged Thompson Speedtouch TG585 v7 router, with some customised firmware on it. Sadly it doesn’t have a terribly good reputation for reliability, probably as a result of that customised firmware, so it’s not something I actually wanted. Bizarrely Be Unlimited seem to think that this router is worth £100, and insist that at the end of the contract you either send it back to them, or pay them the £100. Which is even more odd, given that you can buy one of the wretched devices here for only £36 retail. Since I already have a couple of nice ADSL2+ routers, the last thing I needed was another, let alone an unreliable one, but try as I might I couldn’t persuade Be not to send me yet another. For the life of me, I can’t understand why they are so insistent about this, but at least they have a Freepost address to return it to, so I can package it up and send it back to them at no cost just as soon as I’ve proved to myself that their line is up and running properly.

The estimates for my connection speed are somewhere around 17Mbits, and the line should be migrated and activated on Monday. I’ll actually sacrifice a little of that downlink speed for an increased uplink speed, but with luck I’d hope to see somewhere around 16Mbit down and 2.5Mbit up. To be honest, I’m not quite sure what I’m going to use all that bandwidth for yet. Feel free to make some suggestions!

It’s all about scalability…

As I’ve told friends and colleagues about my diagnosis, I’ve been overwhelmed by their responses; busy people with heavy workloads have made time to stop and ask if there is anything they can do to help.

Many have asked me to keep them up to date with how I’m getting on as my treatment progresses. I’m delighted to do that, but at the same time I’m becoming alarmed at the size of the distribution list; I don’t want to start mail-bombing large portions of the IBM population with regular health updates. I also suspect I’ve lost track of exactly who wanted updates…

As a result, I’m going to send out one more email to everyone, and point them to this blog, so people can choose to either follow my progress or not, in their own time, as they see fit.

Etiquette and conventions

Yesterday I announced my illness to my wider community of friends and colleagues. Support from them has been amazing, both in terms of their direct responses, and the responses from people who I didn’t think I knew very well who have found out by word of mouth and have subsequently sent me their best wishes too. I spent 4 hours last night writing replies to them all.

However, as someone who has worked in this company for some 20-odd years now (how did that happen?) I know a vast number of people well enough to nod and say hello to as I walk around the various office corridors.

Often we’ll exchange a few pleasantries, ask after each others families etc.

But what on earth do you say when someone you only know slightly is walking the other way, and says “Hi, how are you?”. In most cases, they expect something along the lines of “Fine, yourself?” said with barely a break in step. Do I say, “Not great, I’ve got cancer”? Or not mention it? If I do pick the former approach, what kind of impact does that have on them & their day? They can’t keep on walking (well not without being obviously rude!) but then having stopped, what more can they say to me?

I think there should be a convention here. Lets call it office etiquette for employees with serious illnesses. I’m going to lie to all those people, and continue to say that I’m fine. I don’t want to ruin their day, and honestly, I’m not sure that I want to provoke all those awkward conversations where they don’t know what to say to me. Because actually there is nothing that they really can say anyway …