Recovery from chemotherapy (week 4)

It’s been a hectic week, what with one thing or another, but when I reflect on my side-effects and symptoms, there haven’t been any startling changes to report.

My peripheral neuropathy is feeling worse this week than last, which I suspect is related to the fact that it seems to be quite a bit colder weather this week. My fingers, hands, feet and toes all feel numb and uncomfortable. Still, the problems with my larynx haven’t resurfaced, so at least I don’t have that to worry about. From talking to a colleague who’s now recovered from his chemotherapy, I now know I could have many more months left before the peripheral neuropathy really goes away. Although that’s a bit depressing it also gives me a better idea of what to expect, and at least I know I’m likely to be in for a long haul on this.

My tiredness generally seems to be a little better, though as it’s been a busy week where I’ve burned the candle at both ends, it’s hard to tell for sure. I’m also cutting back on my codeine now, which should also affect my tiredness (positively) so there is a lot in the mix here. Next week is (if anything) going to be even busier, so I wouldn’t be surprised to see me thinking that my tiredness was getting worse, when in actual fact, it’s getting better and I’m just doing a lot more.

My sense of taste is still weird. No change.

My dry skin, and all the resulting flaking and peeling has remained annoyingly pronounced this week; again, I suspect the change to colder weather may have played a part here. I’m back on the “new man” regime of moisturise, moisturise, moisturise.

I am FROZEN. All the time. I just can’t get warm. Admittedly the weather is definitely colder, but even so, despite becoming an expert on layering, I just don’t seem able to get or keep warm; T-shirt, thick overshirt, fleece and ski-jacket, and I’m still shivering. I keep over-riding the programmable thermostat at home too, bumping the house temperature up a couple of degrees to get comfortable. I’m doing it sufficiently regularly that I may just give in and reprogramme the temperatures.

The problems with my ileostomy, hernia and stoma haven’t changed, though fortunately the status of my reversal operation has. I only need to cope with them for another 9 days, and then I’ll be in for the surgery to remove and resolve them. However, in the interim I’m finding dealing with the problems more difficult, simply because I’m now reducing my codeine dose. The consequences are that the output of my ileostomy is rising, and I’m now experiencing more pain from the stoma where it is chafing on my waistbands/belts when previously that pain was controlled by the codeine. Speaking of which, I’ve reduced my codeine dose by 25% over the last week, and will reduce it by another 25% (of the original dose) this week. I’m assuming that when I have the reversal operation I will be taken off the remaining codeine completely, so I really need to reduce it as much as possible before that.

Being forced to go “cold-turkey” on the day of the operation doesn’t sound particularly clever!

Leaky plumbing? Redux

My surgeon called this evening to let me know that he’s happy with the x-rays that were taken as part of my gastrografin enema test. I’m now confirmed for surgery to reverse my ileostomy on the evening of the 17th.

I’ll be called into the hospital for (more!) blood tests and pre-clerking sometime prior to the 17th, then I’ll go into hospital late afternoon on the 17th, and on into theatre around 6:30pm. I should be out of theatre later that evening, and will be kept in for a few days until the doctors are happy that my bowels have correctly restarted.

I’ll then be released home, but probably require a week or two of nursing care to regularly redress the wound, which will be left “open” by the surgeon to aid the healing. Time to fully recover from this procedure is very individual; anywhere from 4 weeks to a year. For most people it seems to be in the two to three months range, but I won’t know how it will be for me until I get there.

Still, it’s really good news – the plan is coming together

Leaky plumbing? Revisited again.

My surgeon called this evening just to let me know where things are with the results of my Gastrografin test. As we expected, the x-rays didn’t get processed in time to make it to the multi-disciplinary diagnostic team meeting on the 20th, and my surgeon, along with most of the rest of the team, was on holiday for the meeting on the 27th. After all, it was half-term, and doctors have families too! So, he’s yet to see my x-rays.

However, he confirmed that I did have an end-to-side anastomosis, which is really good news given the comments from my radiographer (see this post). However, the blind end normally tends to completely fill with contrast agent, which would be very obvious on the x-rays. From what the radiographer said at the time, and what I saw of the x-rays, I’m not sure that that was the situation in this case. So understandably my surgeon wants to review the x-rays himself before committing to a final go/no go decision on the reversal operation.

He’s going to call me on Tuesday afternoon / evening to let me know the outcome of that review, but the good news from my perspective is that he’s sufficiently confident to at least provisionally “book” me for the reversal operation on the 17th of this month. Hooray!

If the join does turn out to be leaking slightly then it will be a case of delaying the operation and monitoring the leak to see if it continues to heal naturally; that could take quite some time. Since we want to get me back to work sooner rather than later, the backup plan is to start reducing my codeine intake now so I can rejoin work with my ileostomy if necessary. I’m hoping to half my intake over the next fortnight, and eliminate it by the end of this month. That ought to be feasible now that I’m no longer on any chemotherapy drugs.

Still, I’m feeling very positive at the moment, and assuming that the reversal operation will go forward as planned. I must admit, it’s strange to see just how excited I’ve become at the prospect of being cut open again!

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.