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.

Positive side-effect of treatment – reprise

Yesterday my eldest daughters were taking part in their dance club’s annual show. This is a 3 hour extravaganza where all the kids get to show off what they’ve learned, from the little ones who are only 4 or 5 years old, and just starting, through to the young women who are getting ready to head off to college (often stage school).

The show itself covers everything from tap, modern and jazz through to the ballet that my two do. And it’s held in the public eye, at the local town theatre with professional choreography, lighting and music. It must be quite intimidating for the younger kids to get up on a proper stage in front of an audience of several hundred people, and perform their pieces. And so they all spend a lot of time learning their dances, and rehearsing like mad.

Which brings me to the point of this post. The show was yesterday evening, but the final dress rehearsal was early yesterday afternoon, which meant that the rest of the family got to spend a couple of hours in town, with not a huge amount to do. So we did quite a lot of window-shopping. Which is not normally my favourite occupation.

Except I happened to notice a nice looking jacket, and felt compelled to try it on. So I hooked out my size from the rail and tried it on, only to see it literally hanging off me. In the end I needed to drop 2 sizes to get it to fit. At which point it did fit very well indeed. Which hammered home to me just how much weight I’ve lost recently.

In the end, since I’m probably going to lose some more weight yet, I decided not to buy the jacket. But when we got home I went for a rummage through my older clothes.

• My most recent suit is now probably two sizes too big for me.
• My next most recent suit (relegated to the back of the cupboard as “too small”) is probably still a size too big for me now.
• My jazzy old waistcoats now fit beautifully, as do some of my older shirts.
• My oldest suit (three-sizes smaller than my newest) is just a little tight across the shoulders. But only just. A few more kilos off should see me back into it.

The only problem is with the trousers. Although I’ve clearly lost at least a couple of sizes off my waist (4 inches or so), the location of my ileostomy is such that it’s right where the trouser belt sits. Which easily adds a size to my waist, if not more. So the new slimmer, trimmer me has a way to go to get back into those older suit trousers … and that way involves some more surgery as well as probably some more weight loss.

Of course, there is a grey cloud surrounding this silver lining. If I keep on losing weight at this rate, I’m going to need to invest in some new clothes before I return to work. Yikes. Still, the good news is that my wife approves so much of the new slimmer me, that I get an automatic approval for new clothes, provided I keep the weight off

Oh yes. And the dance show was a great success too, with J & A dancing some really complicated parts, and (for the first time) being lifted. I was impressed and proud!

Six day update (Oops)

Where does the time go? Seems like only yesterday that I was writing the last post, rather than nearly a week ago. Nonetheless, the calendar doesn’t lie, so I ought to have lots to report, but in practice, it’s been a pretty quiet week, and from my perspective, none the worse for that.

I guess that’s the nature of the resting between the cycles. I’ve spent much of the time doing very little. I’m still feeling very tired most of the time, and catching up on sleep doesn’t seem to have helped much. I’ve been so tired that I’ve even managed to sit still long enough to watch some of the tennis from Wimbledon!

In short, for the first time I seem to be about to go into a cycle of treatment while I’m still actually feeling actively ill. From talking to other patients, I don’t think this is unusual – quite the reverse in fact – the fact that I was not feeling exhausted seems to be fairly unusual. Hopefully I’ll feel a bit more on top of things come Tuesday when my next cycle starts though; it’s one of those times when I have to put on my brave face, and that will definitely be easier if I’m feeling a bit better at the start.

Overall, when I look back at cycle three in its totality, the major themes were the tiredness, a much worse case of peripheral neuropathy during the first week to ten days, and the ongoing struggle with managing my ileostomy.

Other side-effects were there too of course, but in the grand scheme of things, they just weren’t a major issue for me. In particular, I saw a lot more dryness of skin, especially on my hands and the ends of my fingers, and despite my best efforts to be a “new man”, and moisturise at every opportunity, I ended up with some quite nasty cracking of the skin. I also managed to get a nasty blister on the sole of my foot that had me hobbling around for a few days. But those were just inconveniences really.

In most ways, the peripheral neuropathy also fell into that category, but the pain was much more intense, and for the first time it started to impact on my day to day activities. So, carrying milk from the fridge to the workbench to make a cup of tea was on the limit of my abilities. By the time I’d got the milk across the room I’d pretty much lost sensation in my fingers – much further and I would have been in danger of dropping the carton. Similarly, holding cheese or tomatoes to slice them after they had been chilled in the fridge was almost impossible. And though there has to be some entertainment value in the sight of me getting the ground coffee out the freezer in dressing gown and skiing gloves, I’ve never actually caught my family laughing at me – well, not yet, anyway

The major problem though, was still the ileostomy. During normal life I continue to be pretty much in control of my hydration & find balancing my fluids OK, provided I’m reasonably strict about my drinking, and taking my (pretty heavy) doses of leperomide and codeine. Unfortunately, when I take the chemotherapy drugs these add significantly to the strain on my system, and seem to push me right to the limit of what my drugs can help me cope with. At that point any small thing is enough to push me over the brink – be it eating something inappropriate, the weather being hotter than normal, or my forgetting to drink/take my drugs regularly enough.

At a simple level this results in my needing to drink more and empty my bag more frequently. But it also means that the bags themselves are under more strain, and they appear to have a tendency to fail more readily as a result. I suffered several of these failures during this cycle. Apart from the immediate distress and problems of dealing with that, there are psychological effects too; I found myself worrying that everything and anything I was doing might result in my bag leaking, even to the point of trying to sleep less soundly so I might have some warning of any impending problems. And there is only so much of that that you can take – it’s no way to live.

Still, tomorrow I see the oncologist, and then Tuesday I get my next IV infusion. This will be cycle four of eight, so I will be officially half way to through the treatment. Hooray.

Positive side-effect of treatment

I was just thinking as I finished my last post, that I do seem to spend a lot of time grumbling about the side effects of my chemotherapy (in particular) and cancer treatment (in general). I guess this is part of the human condition. As a species we do seem to like to have something to complain about, and I’m no different from the majority in that. However, it’s very easy to overlook the positive aspects of my treatment plan, and the chemotherapy in particular. The former has without doubt saved my life. The latter, while not without its trials and tribulations, will hopefully ensure that my life will continue on for at least my three score years and ten, and hopefully a good deal longer, and I ought to celebrate that a little more than I have been.

After all, it’s not too many years ago that this disease would have snuffed me out of existence without a backward glance, preventing me from seeing my children growing up, getting married and having kids of their own; preventing me from growing old and grey(er!) with my wife; preventing me from enjoying all the myriad joys that life has to offer. So perhaps I ought to bear all that in mind more when I feel like complaining, and try (as Monty Python would say) to “always look on the bright side of life”.

Of course, this isn’t going to change my basic personality much; I’d like to think that as time is passing, I’m becoming an honorary member of the “grumpy old mens club”. But the difference between being a “grumpy old man” rather than a depressing old bore, is one of degree. The real grumpy old man is light-hearted and amusing, and knows when to be positive, which says that it’s about having a sense of humour about the passing of the years and how life changes around us with the passing of those years, rather than just whinging and complaining endlessly about everything.

Something for me to aspire to.

But in the meantime, it occurs to me that one very noticable and positive side-effect of all my treatment is my weight loss. I went into surgery weighing a very unhealthy 108Kgs. I came out of surgery a kilo or two lighter. I then lost a further 12Kgs or so during that first fortnight when I was unable to eat, and was waiting for my digestive system to restart. And since then I’ve slowly lost (with relative ease) another 5Kgs or so, leaving me (currently) a much more healthy 89Kgs.

I’m hoping that by continuing to re-educate myself in terms of diet, exercise and eating habits, I can hopefully lose another 5-10Kgs over the rest of this summer. Even having lost so much weight, I’ll still be a little overweight according to the doctors dreaded BMI charts, but if I can maintain my weight at 80-85Kgs into the future I will be extremely pleased. Apart from the benefits to my self-image, better participation in life (sports etc) it will reduce the chances of suffering a heart attack or stroke enormously – which has to be a good thing.

So there you have it – a good side effect from all this cancer treatment!

New side-effect – exhaustion

This last week I seem to have come across a new variant of the side-effects. I’ve always had quite a lot of tiredness, but last week (during the second week of the third cycle of chemotherapy drugs) I’ve been completely exhausted. I’ve struggled to wake up in the morning, struggled to stay awake during the day, and often completely failed.

It’s been very frustrating; these last few days have flown by, with me mostly asleep achieving nothing. When I have been awake I’ve had absolutely no ability to concentrate, and have been forgetful to a degree that has been frankly embarrassing, failing to even remember simple requests almost as soon as they’ve been asked of me. I’ve frequently found myself deciding to do something, walking into another room, and then realising that I’ve already forgotten why I’d even gone there.

The doctors warned me that the drugs were cumulative in their effects, and I guess that this is probably the first sign of that happening. I find it worrying that it’s come on so suddenly, so apparently severely, and with so much more of my treatment still to go though. I’m just hoping that as soon as I come off the chemotherapy drugs for my resting week (this coming week) I’ll regain some of my energy & concentration. And that perhaps this has just been a temporary “blip” in the severity of the side-effects.

Because at the moment, if my treatment continues in this vein, it’s looking as though I’m going to spend one week in three pretty much asleep for most of the next 4 months. Which is going to be really tough to deal with.

I’ve been “googled” – twice!

I’m trying to gently increase my level of fitness after my operation, and one of the chosen weapons is my bicycle. I’m sticking to mostly circuits of the local roads, generally only looking to spend 30 minutes or so in the saddle at a time. Given this is on a mountain bike with big chunky tyres, that limits my distances to 3 or 4 miles or so at the moment, which is enough to gently raise the heart rate rather than anything more serious – Lance Armstrong I am not

Anyway, today I decided to venture a little further afield (literally) and head over some common land and down some unmade lanes that run parallel to the sea. To get there took me through a small housing estate, where (to my surprise) I met the Google Streetview mapping car, who was obviously doing the local area. So I cycled on, wondering if at some point I’ll show up on their imagery, completed my ride, put the bike away, and walked into my study, only to see the same Google Streetview car turning around in front of my house.

So at this rate you could see me once on my bike, pedalling off for a nice ride, and once again, in my study, staring out at the cameras. I wonder how long it takes them to get the data online?

Things are on the up?

Yesterday was a very bad day indeed. I woke up feeling ill, and that feeling just got steadily worse through the morning until I had to give up and go back to bed again. I’m not even sure I know what the problem was, but I suspect a combination of tiredness, dehydration and the heat of what turned out to be a gloriously sunny day finally caught up with me. In the end, the cause made no difference – the result was the same. I was only out of bed long enough to take my medicines and eat breakfast, lunch and tea. Which for me is nothing short of staggering. I’m typically a night owl, and happily get by on 5 or 6 hours sleep a night. Whereas yesterday I got by on only 5 or 6 hours of wakefulness.

Fortunately, today was a lot better. I woke up early (hard not to after so much sleep!) had breakfast, decided I was feeling much better, and tried to decide whether I was going to try to do something special with the day or not. In the end the decision was taken from me, as my new Acer Aspire One (the second I’ve bought) turned up before I’d managed to make any decision. And so I suddenly had a task to achieve – to get it set up for my daughter. Since I needed to add more memory to it, this involved a trip to the local computer hardware store in Fareham, the disassembly and reassembly of the machine (to fit the memory), and the installation of both Windows XP and Ubuntu UNR on it, plus some configuration to make it play nicely on our home network. Quite enough for one days efforts.

It’s not clear if having a target for the day made any difference or not, but apart from feeling incredibly thirsty all day, I’ve felt fine, kept busy, and achieved some stuff. I’ve also drunk my way through 2 litres of bottled water, plus some tea and coffee (so far) and would really fancy a pint of bitter about now, if only I didn’t know for certain that it would have repercussions later.

Meanwhile my various other side-effects seem to have sunk into relative obscurity; the only thing that niggled at me (that I particularly remember anyway) was a touch of the peripheral neuropathy which caught me by surprise while I was trying to fight the ground coffee back into the freezer again.

So, after the last few days I declare today to be a massive success, and if it holds until tomorrow then I’m going to plan on going for another cycle ride and work on building some more stamina.

Not enough sleep, too many hiccoughs

It seems that a feature of the early part of this particular cycle was hiccoughs. In addition to Thursday night I was up almost all of Friday night, and most of Saturday night with them too. It’s frustrating really, because although they’re not particularly serious, when you have them for a long(ish) period of time it gets really tiring (especially when you’re not sleeping!), and it affects the people around you too.

Fortunately it looks as though they are finally wearing off, as I’ve not noticed them at all today. Despite it now being Monday morning (just) I’ve had no hiccoughs tonight, and I’m only awake at this time of night because I’ve been playing with the VoIP phones again, and got engrossed (successfully!) in that, rather than going to bed at a sensible time of the night. Which I guess I should count as a good thing

However, on the less-good side of things, it’s clear that the chemotherapy is driving my ileostomy output much higher than normal. This has had two major side-effects for me; firstly I’ve had two “bag failures” this weekend alone. Even though things like that are (unfortunately) to be expected, it’s still extremely depressing when it actually happens. Secondly, my hydration has been suffering again. In the end I’ve purchased the raw components to make up some St Marks oral rehydration solution. The stuff tastes foul but is effective, and if I get into the same problems as last month then I want an option that will help me to keep hydrated, avoid hospitalisation, and do so without taking any chances.

Overall though, I think I’m going to have to have another serious discussion with the stoma care nurses, and if things can’t be improved pharmacologically, then possibly reconsider my decision on the early reversal of my ileostomy. The problems with hydration, the bags themselves, and the need for high levels of codeine to attempt to mitigate those problems are between them becoming a real issue for me.

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!

Update on cycle three

So far, it’s working out bearably. Similar symptoms to the last two times, but the degree of each is varied.

• The pain in the arm where the IV was administered is fine … getting better already, as with cycle 2. I think we have cracked the delivery mechanism.
• The nausea is worse.
• The peripheral neuropathy is much worse.
• The hicoughs are back – *sigh*
• The tiredness is about the same
• The feet and hands thing (dry cracked skin, ulceration etc) is still mild enough to mitigate with good moisturisers
• Everything tastes of metal again – food and drink. No worse than the other cycles though.
• The ileostomy output is raised, but not enough to cause concern yet
• I’ve noticed that my hair isn’t growing as quickly, though it’s not falling out either – well not yet anyway.

So, on balance I’m still coping fine. But damn, the tablet counts are high again:

• Breakfast: Aspirin (1), Perindopril (1), Dexamethosone (2), Granisetron (1), Codeine (1), Loperamide (2), Capecitabine (4), Metoclopramide (2)
• Lunch: Dexamethosone (2), Loperamide (2), Codeine (1), Metoclopramide (1)
• Tea: Loperamide (2), Codeine (1), Metoclopramide (1), Capecitabine (4)
• Bed: Loperamide (2), Codine (1)
• Grand total: 31 tablets. Shake me, and I rattle

Still, at least I’m over a third of the way there now.