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!

Recovery from chemotherapy (week 3)

Another week goes by, so time for an update on the chemotherapy side-effects and my recovery from them. Sadly, not a lot of change to report since last week – most of my symptoms are very similar.

My peripheral neuropathy is still present. My fingers and hands feel a little better than last week, but there is no change at all in my feet/toes, which still feel numb and uncomfortable. I’m not noticing any problems with my larynx any more, which is good, and means I can now eat/drink cold things with impunity again. Overall it seems to be slowly improving, but I think I’m going to be dealing with this for a while yet.

No real change in the tiredness. I can get up early in the morning now, but I still find I want to sleep for an hour in the early part of the afternoon, and I struggle if I don’t. So saying, I’m working on cutting down the length of time that I sleep for, and on the days when I’m feeling particularly good, I’m trying to miss the sleep out altogether. I can tell that I’m making some progress here, but again, it feels slow at the moment.

My sense of taste is still weird. I no longer have any loss of taste, and I don’t have the over-riding metallic tastes any more, but lots of things just don’t taste the way they used to, which is most strange and pretty frustrating. In particular, I find some of my favourite things (eg pasta and tomato-based sauce) don’t taste the way I expect, and so aren’t my favourite things any more. Menu planning is proving frustrating as a result.

The dry skin, and all the resulting flaking and peeling has been a lot worse this last week; probably the worst I’ve experienced. However, the last couple of days it seems to have suddenly taken a turn for the better, with my fingers and hands improving dramatically. Hopefully this is a sign of things to come, and that I may be rid of this soon.

I still seem to be feeling the cold. No change there.

The problems with my ileostomy, hernia and stoma haven’t changed since my last post. I think this is something I’m just going to have to put up with until I (hopefully) get my reversal operation. More on that as soon as I hear some conclusive results from my gastrografin enema test, which ought to be sometime in the second half of next week.

Smartphones, redux.

My “new” Nokia 8850 arrived today. As expected, it was completely refurbished, which is to say that it was an original chassis and circuit board, with new after-market covers. It also came with a UK specification OEM Nokia power supply, and two brand-new lithium ion batteries.

The phone is exactly as I remember it, though the covers lack the quality of the originals. I think the original OEM covers were made from titanium, whereas these covers appear to be largely some form of plastic. Update: The original cases were made from plastic and aluminium, but the standard colour finish was confusingly called “Titanium”. My covers are also made of plastic and aluminium, but definitely not as good quality as the OEM items would have been. However, without looking very closely, you’d never know the difference. And I can’t imagine that there are any original OEM covers left that haven’t been scratched to pieces by now, so it’s a reasonable compromise for what is really a ten year old phone.

In use it is exactly as I remember it. By todays standards it’s severely lacking in features, but it meets my requirements perfectly. It’s tiny, it makes phone calls, and it sends and receives SMS text messages. And that’s all it does. Total retro-style for only £27. So far I’m loving it.

The only problem I’ve found is that my Blackberry is unable to write its address book to my SIM card, so I have no simple way to get all my phone numbers transferred to the Nokia. I always thought the Blackberry was rubbish, but honestly, how poor is that?

Leaky plumbing? Revisited.

Today was the day to test if the rejoin in my colon has healed properly, or if it has the potential to leak, which could cause potentially significant complications.

My appointment was at the Spire hospital in Havant at 9:20am, which was close enough to the rush hour that I decided I’d better get an early start. It was as well that I did, as the traffic was very heavy, and actually at a stand-still on the four-lane section leading up Portsdown Hill towards Portsmouth. I set off at 8:15 and arrived at 9:00am, which is fairly crazy for only an 18mile drive mostly along a motorway.

The advantage of doing the treatment privately cut in as soon as I arrived, with me being ushered straight through to the waiting room, where I was then immediately taken to the changing rooms, and given a surgical gown and dressing gown to change into. It’s funny, but having practically lived in a surgical gown for 3 weeks back in March, getting back into one again felt completely natural; I even managed to get all the tapes tied up behind me.

And then it was straight into the x-ray room, where my radiologist took me through the whole procedure, just so I knew what was going to happen. Which turns out to be exactly as described in the leaflet that I linked to back in this post.

The whole procedure took about 15 minutes; my initial vision of a cork, a bucket and a stirrup pump was disproved almost immediately, though the process did involve a rather large syringe and a flexible rubber tube to introduce the gastrografin. The radiographer remained in the room with me throughout, though he was dressed in a lead apron, with various additional lead-lined shields to protect critical parts of his anatomy. He helped get me into the right positions under the x-ray machine to get the images that he needed, adjusted the amount & location of the gastrografin contrast agent, and then captured the needed images.

The whole process was completely painless, and much to my amusement, the staff seemed determined to spent a lot of time doing everything they could to try to maintain as much dignity for me as possible. I’ve long since passed the point where I’m worried about false notions of privacy or dignity; I’m there to be treated, not pandered to. But I can imagine that there are some patients who would find the process embarrassing, especially given the mixed team of radiographers (wo)manning the equipment, so it was good to see them doing what they could.

The end results are however, rather inconclusive. It turns out that there are two common ways to rejoin the colon. One is the end-to-end anastomosis, and the other is the end-to-side anastomosis. The former is where the two cut ends are joined together. The latter seems to be where one cut end is formed into a pouch, and then the other cut end is then attached through the side of that pouch. According to the request sent to the radiographer I was supposed to have an end-to-end anastomosis, but the x-rays he took today seem to indicate that I have an end-to-side anastomosis.

So, if the radiographers request is wrong and I do have an end-to-side, then everything looks very good indeed. If however, the radiographers request is correct and I have an end-to-end, then the join doesn’t appear to have healed as expected. So the next task is for the radiographer to go back to my surgeon (who wrote the request) and check the details, and then for them to get together with the x-rays to interpret them, and then to decide what action to take next. They normally meet on Tuesday mornings, so depending on whether or not they can get the x-rays processed by tomorrow morning, I’ll either hear more later this week, or later next week.

I feel like I ought to be worried, but actually there’s nothing I can do, so really it’s just a matter of waiting to hear what happens next. Got to love the suspense!

Recovery from chemotherapy (week 2)

Another week goes by, and I think I’m starting to see some differences.

My peripheral neuropathy is still present; my fingers, toes and feet all still have numbness. However, I’ve noticed that I’m no longer as badly affected by the cold as in the past. I can now get things out the fridge (and even the freezer) without the problems I’ve experienced over the last few months. It seems to be getting better.

My tiredness is still present. I still want to have an hours sleep in the early afternoon to help me get through the day. I find that if I miss that, I feel the effects – my concentration slips, and I eventually end up struggling to stay awake. But I can now push on through the day without that sleep if I have to, whereas I wouldn’t have been able to do so even a fortnight ago. Things are improving!

Taste is still definitely not right. No real change. Drat.

The dry skin, with the associated peeling and cracking, is still present. Overall my hands seem to be getting a little better, but my finger-tips and feet are still just as bad as ever, which is frustrating. Hopefully I’ll start to see some improvements soon.

I’m still feeling the cold, though perhaps not as badly as before. Mind you, it is actually colder now, so I may just be experiencing that. Who knows?!

Management of my ileostomy hasn’t changed. Still the same old games with managing my hydration. The swollen stoma still isn’t showing any improvement, and my hernia continues to be a frustration. However, I can see an end in sight to most of that when I get my ileostomy reversed, hopefully next month, though naturally if it improves in the meantime, that would be a plus!

So, slightly slow progress perhaps, but it is progress nonetheless.

Smartphones – revisited again

I just got notification that my Nokia 8850 has been dispatched, along with the tracking identifier so I can work out where it is, and what’s happening to it.

Currently it’s in Hong Kong, awaiting international departure; I’d hope that it will make it to the UK by the weekend, clear customs on Monday, and perhaps arrive here just before the postal strike starts on Thursday next week. But that rather depends on whether it runs into the backlog of parcels that already exists in London from the existing one-day strikes that have been ongoing since mid-September.

If it does then I expect I won’t see it for quite a while.

Update 1: As of the 16th October, my Nokia 8850 is boarding a plane for the UK and leaving Hong Kong behind.

Leaky plumbing? Hopefully not.

I just got my appointment through for a Gastrografin Enema on Monday the 19th, at 9:20am. This is the test that will determine whether or not I am eligible to have my ileostomy reversed.

The hospital staff will fill my lower bowel with a contrast agent, and then take a series of x-rays, while asking me to move through a series of positions to allow them to image all the colon clearly. Apparently this is fairly radiologically intensive; I get about 3 years of “normal” levels of radiation in only about 15 minutes. If there are no leaks where the surgeon excised the tumour and rejoined my colon, then the contrast agent will remain confined to the bowel. If any of the contrast agent leaks out into my body cavity then it will show up clearly on the x-rays, and obviously this indicates a problem with the surgical join in my colon.

In that case I won’t be able to go ahead with the ileostomy reversal, as I would end up contracting peritonitis and sepsis as the contents of my bowel leaked into my body cavity. Since those are both potentially fatal problems, I’m quite happy with them wanting to make sure everything is OK before going ahead with the reversal. However, I’m not sure what actually happens if I fail the test. Can they do some further work on the colon to repair the join and allow the reversal to go forward later, or does it mean I’m stuck with the ileostomy for life? That would be a real disappointment at this stage, after expecting for the last 6 months to be able to reverse it.

But hopefully I won’t have to worry about that; I’m working on the basis I’m going to pass the test without any problems.

Recovery from chemotherapy (week 1)

It’s been five days now since I took my last set of chemotherapy tablets, so I thought I’d provide a quick update on where I am with the side effects. As you’d probably expect, at this point there is little difference from the normal resting week that I used to have between cycles. Consequently I still have a lot of the side effects, and although I’d hope to see them starting to fade, it’s probably too early yet.

So, the tiredness is still an issue, and though I do seem to be finding it easier to wake up early in the morning, I’m still finding I need to rest (usually sleep) early in the afternoon. Although the amount of rest I need is definitely going down, if I can’t get any rest I find my concentration really suffers, and I struggle to keep going with whatever I’m doing. Having said that, it’s already much better than it used to be, where I was sleeping for several hours each day, and is starting to allow me more freedom in scheduling my days than I’ve been used to.

Hiccoughs are gone. Good riddance!

Taste is back, but definitely not yet back to normal. Although both the lack of taste, and everything tasting metallic have gone, a lot of the things that I’m eating do not taste as I remember them. It’s most strange; they have taste, but not what I remember or expect. Which actually means that in some cases, I find that I don’t like the “new” taste, and don’t want to eat things. It’s all very odd, and hopefully will fix itself with a bit more time.

My peripheral neuropathy is still present, and doesn’t seem to have improved at all. I still have pain in the fingers, numbness in the toes and feet, and tightness of the larynx, all of which is hightened when I’m subjected to cold.

Dryness, cracking and peeling of the skin has actually got worse recently than I’ve ever noticed before. My fingers in particular seem to be peeling like mad, irrespective of the amount of moisturiser that I use. This has proved to be surprisingly painful, and (in conjunction with the peripheral neuropathy) has prevented me from doing some odd jobs around the house because I’ve not been able to grip things tightly enough. Getting my tablets out of their blister packaging has also proved to be a challenge at times too. I’m really starting to appreciate how difficult managing medicines might be for older, less physically able people; it sometimes seems like no-one has given the packaging any real thought at all.

I still seem to be struggling to get warm; a lot of the time my wife and kids will be wandering around in shirt-sleeves, while I’ll be layered up in a fleece etc, and still feeling very cold and shivery. The solution seems to be for me to go and curl up under a pile of blankets, and usually grab some sleep at the same time. This is making me wonder if feeling the cold is really to do with warmth, or if it’s another manifestation of tiredness. Either way, I can manage it, though it is annoying.

My ileostomy output seems to have settled back a little, just as it always has during my resting weeks. However, I’m still very high output, so I still need to keep a close eye on what I eat and drink, and monitor my hydration carefully. But its nice to have a little more headroom than when I was on the chemotherapy drugs.

And finally, speaking of my ileostomy, there is still no sign of my stoma shrinking; it’s still remaining resolutely congested with fluid, and uncomfortably swollen. I’ll see how things progress over the next few days, but I suspect another visit to the stoma nurses might be in order in the next week or so.

Face to face with Karmic Koala

One thing that does irritate the heck out of me with the new Karmic Koala release of Ubuntu is the new “face greeter” that Gnome have introduced with version 2.28. This shows up when you boot your system as a list of users that you might like to login as, with a customisable icon next to each. You then have to click on one of these entries with your mouse before an input field opens up for you to enter your password into, allowing you to login.

Although the screens are pretty, it’s nowhere near as convenient or as fast as being presented with an input field into which you just type your userid and then your password. It’s also almost identical to the login process that Windows XP introduced a few years back, which I always felt (perhaps uncharitably) was designed for people who couldn’t remember their userid, and needed a little picture instead.

Anyway, me being me, I want my login process back the way it was thank you.

However, the GUI that Gnome have provided to customise the login screen is somewhat deficient in this area, despite a bug report asking for some improvements. You can either have the “face greeter”, or you can select a userid to be logged in automatically without any user interaction (optionally after some time-delay). And that’s it.

Fortunately they provide a command line tool which allows you to customise many, many characteristics of the Gnome environment, called gconftool-2. And after some digging around it turns out that there are some settings related to the login panel (also known internally within Gnome as “gdm”) which can be adjusted using this tool, including one setting which disables the new “face greeter”. So if you, like me, don’t like this new behaviour, simply open up a terminal and type (on a single line) :

sudo -u gdm gconftool-2 --type bool --set /apps/gdm/simple-greeter/disable_user_list 'true'

The result still isn’t exactly the same as it used to be, as the login screen now comes up with a single button, labelled “Log In”, which you must click before being given the old, familiar password/userid entry field. Which is also deeply annoying, as this breaks a fundamental of user interface design, namely why ask the user to press a button when there are no other options available? Just take them to the next decision point in the process. Fortunately, a bug has been opened against Gnome to fix this, so hopefully we will see it resolved, but whether it will be in time for the final release of Karmic Koala Ubuntu is another matter entirely.

Smartphones – revisited

Well, my heart finally won. I decided to buy an old refurbished mobile phone to replace my Blackberry for everyday use. I know it doesn’t make any kind of sense, and that in every way the Blackberry is technically superior. But I just don’t need all that technology. I just want a compact phone that makes calls, and sends and receives text messages easily and reliably.

I found a company that refurbishes Nokia 8810’s – which was the mobile phone that I remember so fondly. But the 8810 is single band GSM only, which is a bit of an issue these days, where all the networks in the UK depend on using both 900MHz and 1800MHz bands to ensure good coverage in both rural and city settings. So in the end I gave in, and went for the Nokia 8850, which was the follow-on from the Nokia 8810. It still has the same overall style as the Nokia 8810 (designed by Frank Nuovo, who now heads up the design teams for both Nokia & their insanely expensive Vertu sub-brand) but packs in a dual-band transmitter instead.

I figure that since it only cost me £27 for the default silver version (rather than black or gold), even if my heart is completely wrong I won’t have wasted too much money on it. And who knows, if it’s as nice as I remember my old Nokia 8810 to be, it may well help me recapture some of the pleasure I used to get from owning & using it.

Now, I wonder if it will arrive before the start of the Royal Mail strike or not? Hmmmmm.