Half-term hiatus

This has been a slightly strange week. There have been a couple of real high points for me personally, but most of the time the days have flown by with me in a somewhat trance-like state, barely noticing what’s been going on around me. I do wonder at the thinking of people who make a conscious decision to take drugs that do this to you, and then call it recreation. I find the whole process extremely frustrating; the lack of control, the loss of concentration, and the lack of clarity of thought – it all makes me feel less like me.

But perhaps that’s the very result that some people are trying to achieve?

Still, the high-point of the week for me was that I had to go into the IBM offices at Hursley. Another patent disclosure that I’ve been working on for some time had finally reached the point where it was ready to be filed with the US Patent office, and this required that I sign some papers and FAX (how quaint!) them off to the lawyers in the USA. This felt like a real milestone for me, as it was the first time I’d been back into the office since mid-March.

In practice, the drive in was fine, signing the papers and getting them FAXed off took just under an hour, and while I was there I figured I’d go look up a few friends and just say “Hi!” to prove that I was really still alive. Of course, it was the week of the school half-term holidays, so many people were actually out on vacation, but I still managed to catch up with about half a dozen friends (Kevin, Bharat, Dave and Peter amongst others) and it was great to chat about things going on in the world of work again. In the end I left Hursley after a couple of hours, and drove home on a real high.

However, once home I felt really tired; a quick nap after lunch turned into the entire afternoon asleep. Which came as a bit of a shock – I’m obviously still not as fit as I think I am.

I’ve also started my fledgling exercise programme. After receiving the all clear from my consultant to do whatever exercise I felt comfortable with, I’ve been trying to get out on my mountain bike again, while the weather seems to have been trying to prevent me. But this week we’ve been blessed with fair weather, so I’ve finally been able to get back in the saddle again. And it’s nearly killed me. My first ride: 1 mile. Result? Knackered.

But I managed 2 miles on the second ride, and just over 3 miles on the ride after that. I’m clearly not ready for the Tour de France yet, as I’m exhausted at the end of each ride, but I can see the marked improvement, and it feels great to be riding again, even if I’m only doing those miles on smooth roads rather than down nice country bridleways. Hopefully once I’ve managed to build up enough stamina to manage more reasonable distances then I’ll see about venturing further away from civilisation.

Struggles with output

The primary struggle in this case being with the output from the ileostomy, but that also caused a complete lack of output on the blog too, so this has been a bit of a double-whammy in output terms.

My problems started in earnest on Friday, with me noticing that my ileostomy output was higher than normal. Initially I simply assumed that this was down to a little normal variation, maybe having eaten something that provoked me a little, etc etc. But by Friday evening it was starting to become clear that there was more to it than that; the obvious conclusion was that this was a side-effect from the chemotherapy medicines.

In the end the output rose to the point that I got no sleep at all on Friday night. Saturday continued in the same form, with my output continuing to climb, and by lunchtime I had decided to restart taking my codeine tablets again. Sadly, it seemed that these need time to build up in your system and take effect, so the output continued to climb through Saturday and Saturday night, with me again getting no sleep at all. By this time I must have been getting pretty dehydrated too, though in the general melee and through my exhaustion, I don’t actually remember particularly feeling so. Yesterday (Sunday) continued in the same vein, with me taking all my tablets (now feeling well and truly under the effects of the codeine) and struggling to drink enough to stay hydrated.

Things finally came to a head yesterday evening around 8pm when I started to feel genuinely ill on top of everything else – realistically this was probably the first signs of real dehydration setting in. At this point you’re supposed to call the doctors, and get them to help, which in general results in a referral to the local Accident & Emergency hospital department. They would then take me in overnight and put me on IV lines to rehydrate me, at which point I’d have to go through the whole “prove you can manage your ileostomy well enough to be released” game again.

So in the end (because I’m like that) I decided to push my luck a little, and give myself until this morning before calling in the doctors. And in the end (because sometimes I’m lucky) I managed to get away with it. I got no sleep again last night, but I did see my output slowly falling away during the course of the night as the medicines finally took control, allowing me to start to catch up with fluids again. By this morning I was merely feeling exhausted from several nights without sleep, with some small remnants of the dehydration left over. And the ileostomy output is back to (roughly) where it ought to be again – thank goodness.

So the lesson here seems to be fairly clear. When I’m on my “resting” week and not taking the chemotherapy medicines, I don’t appear to need the codeine to control my ileostomy. However, when I am taking the chemotherapy medicines I clearly do need the codeine. And sadly, to go from “no codeine” to “enough codeine” (or the reverse) takes at least 3 days and nights. The conclusion is fairly inescapable; I am going to have to continue to take my codeine all the way through my treatment and put up with the affects on my concentration, because I suspect by dropping my codeine I’d managed to get myself within a few hours of a hospital admission, and that’s not something I want to go through again.

Changes in side-effects

So far this second cycle of chemotherapy seems to be following a fairly similar profile to my first cycle. The side-effects are largely similar, though I’ve noticed that they are subtly different in intensity. The pain in my arm where they ran in the IV is significantly reduced, probably as a result of the change in delivery mechanism. It also seems to be fading away much more rapidly. I suspect that I won’t have any discomfort at all by the end of the week, which is great, as it probably means I can discount needing to go to a central line. *phew*

However, my peripheral neuropathy is much worse. I struggle to get stuff out the fridge or freezer without suffering stabbing pains in my fingers and hands, and if I go outside (even in the current relatively mild weather) I am finding it helpful to wear gloves. Which looks rather silly, but at least it stops the pain.

The output on my ileostomy is also significantly up. Frustratingly this manifested itself in a rather sudden and catastrophic failure of my ileostomy bag last night, which was not a pleasant experience to say the least. Then between general insomnia and the need to frequently empty my (replacement!) bag I ended up getting almost no sleep last night, which is clearly not sustainable. I’ll see how things go today but I suspect I might need to temporarily put some codine back into my medication again to help control this, which having just got rid of it is frustrating to say the least.

In other news, I’ve noticed that I don’t seem to like coffee very much any more. I wake up really looking forward to my first cup of the day, but after that and once I’ve taken my first set of tablets with breakfast I just don’t seem able to drink any more. So, I figure if I can only have one cup a day I may as well make it memorable, so I’ve now got a small cafetiere and some rather expensive ground coffee to make myself a “real” coffee with breakfast. I’m not sure if it’s faff or a ceremony yet, but the coffee just tastes so much nicer than the instant stuff.

But other than those minor issues (and the need to take 13 tablets with breakfast again) I’m back into the swing of the drug-taking part of the cycle again

Start of cycle two

Yesterday was the start of my second chemotherapy cycle. Each cycle is kicked off with what basically amounts to a day in hospital having an IV infusion of oxaliplatin. Yesterday was booked to start at 9am, but with the need to get the kids to school etc, we pushed them back to 9:30, and actually managed to get there at 9:40 (the traffic on the M27 is dreadful these days).

As before, I was ushered into my hotel-come-hospital room, and tea & biscuits immediately turned up, shortly followed by a really nice doctor who has recently been poached from Pakistan. Apparently he held a senior role in paediatrics out there, but having come to the UK is now sadly doing much more menial tasks like simply drawing blood. However, talking to him about life out there and his very young family I can see the logic in what he and his family are doing. Their life would not change for the better under the Taliban, for example.

He got the cannula installed (in my right hand this time) and bloods drawn. Three vials this time for a variety of tests; CEA, FBC & Differential, Urea & Electrolytes, Liver function, and Bone profile. Again, I managed not to faint. I may finally have this whole blood-test / fainting thing resolved.

A little over an hour later the all OK came back down in the form of the actual chemotherapy medicine, dissolved as before into 500ml of glucose solution.

The difference this time was that the cancer nurses piggy-backed the chemotherapy medicine with another litre of glucose solution so the two would be infused at the same time. Clearly this lowers the concentration of the drug that my veins were being exposed to. They also reduced the speed of the infusion, extending the infusion from 2 hours to nearly 3 hours, which again gives the drugs more time to be carried away from the IV site and around my body. And finally they supplied a series of heat packs that are simply laid on my arm over the IV site and up the forearm. This helps to increase the blood flow through the veins in that area, helping to move the drugs away faster.

And the result so far seems to be very positive. Pain, swelling, tenderness in the arm is significantly reduced over the first cycle. There is still significant discomfort … but its nowhere near as bad as last time, and I can imagine (at the moment) that it could well fade away over the next couple of days. Which is great, as it would tend to make me think I may be able to avoid the whole central line business, which is another small win for me.

The pharmacist was also very helpful, and spent a lot of time going through the drugs and side-effects again, exploring which were the worst, and what she could do to help minimise them, and what I could do (from her experience of them) to help myself without needing recourse to further medicines.

In the end I was home around 4:30pm, but feeling exhausted. So now I just need to make up another tick-chart, and get on with taking all the various tablets again.

Oncologist meeting

I met up with my oncologist on Monday. This was to discuss how the first cycle of chemotherapy had progressed, and to plan any changes to the treatment for the second and subsequent cycles.

My oncologist is very “down to earth” and seems to be quite a good judge of personality – he tells me the facts, quotes me the statistics and sources, and helps to fill in the gaps in my knowledge so I can then make my decisions. He describes me as being very “data driven”, which I think he means as a compliment

Predominantly the discussions centered around my side-effects from the various drugs that he is giving me, when and how badly they affected me, and what effect any of the mitigations they had given me had at the time. If you flip back to this post you can see the list of side effects; unsurprisingly some of those he can easily help me with, some he can help me with at the cost of possibly introducing different side-effects, and some he can do nothing about.

The main concern for me was the nearly 2-weeks of tenderness and pain in the arm from the IV. Turns out that this is at the extreme end of the scale; most people experience this for a few days only. The options here are to give me the drug in more dilute form, and give it to me more slowly, or to look to alternative delivery mechanisms. The latter will likely solve the problem, but require that they install a central line. Since I’m not good with needles, this doesn’t sound ideal, but maybe it’s another of those situations where I just need to grit my teeth, close my eyes, and tell them to get on with it. We decided I’ll try the first option, using my other arm, and if unsuccessful then we’ll revisit the central line.

We briefly discussed my (colorectal) consultants offer to perform an early reversal of my ileostomy if a suitable gap could be introduced into the chemotherapy schedule. My oncologists view is that it can be done, but really isn’t optimal from a treatment perspective. So, normally he’d only recommend it if there are critical problems with the ileostomy. Since I appear to be managing to reduce my ileostomy medication (the codine) and continue to successfully manage my hydration, I don’t think I can claim that this applies to me. Since I also really want the best “bang for my buck” from this chemotherapy, the decision is simple. I’ll complete the chemotherapy with no breaks, and schedule the reversal operation for as soon as practical after the completion of the chemotherapy; that’s probably going to mean November.

In terms of the nausea, the oncologist can help by simply increasing the dose of the metaclopramide, and having me start taking it immediately, so that’s simple enough – we’ll take that option. It won’t help with the headaches and tiredness, but taking the nausea out of the equation will make those more bearable anyway. I asked about using standard analgesics (aspirin/paracetamol/ibuprofen etc) to tackle the headaches, but these are not recommended while on chemotherapy because at certain times I am immune-suppressed, and they can mask more serious problems which need to be dealt with immediately. So in short, I’ll just need to put up with the headaches. His recommendation for dealing with the tiredness was to simply to go to sleep, which made me smile. In these technologically sophisticated times there is a tendency for us to overlook the simplest solutions or assume they are somehow less good than something more complex.

My shoulder problem is of interest too, purely because it’s not clear how many of the symptoms I am seeing in that arm are due to the side-effects of the IV that was introduced in that arm, rather than a possible trapped nerve. For now, we’re going to see how it goes, but if there is no improvement then my oncologist will schedule me for an MRI to take a closer look. In the meantime I can simply take some of my codine prescription again to manage any excessive pain from it. I’m quite comfortable about that idea since the worst time to cope with the pain from the shoulder is at night, when it prevents me sleeping, and I don’t mind the codine making me feel drowsy then!

The remaining side-effects are ones that he can do very little about, without possibly introducing other side-effects. Since none of the ones that I’ve experienced so far have individually been very bad, I’ll take the devils that I know, rather than introduce new ones to the mix. And hopefully as summer arrives and the ambient temperatures rise, the peripheral neuropathy & tightening of the larynx will both become less of an issue anyway.

So, my next appointment with him is in 3 weeks, unless there are any problems in the meantime.

Two days without codine

After meeting my consultant on the 14th I mentioned that I was going to try to cut out the codine, which I’ve been taking (at the maximum daily level) for the last 6 weeks or so to help slow down the output of my ileostomy. I considered reducing the dose by 25% a week, but in the end I decided to just stop taking them completely, and see what would happen. It turns out that it’s had a minimal effect on my ileostomy output; certainly not enough in my mind to justify continuing to take them. Meanwhile I feel much more alert, and considerably less drowsy. All of which is good.

Unfortunately, having gone “cold turkey” on them, I am now experiencing classic opiate withdrawal symptoms. So I’m extremely restless, and thoroughly irritable. In particular, I’m not managing to sleep for more than a couple of hours at a time, despite feeling pretty tired, which isn’t ideal for me, and must be driving my poor wife mad. Apparently this can last for a week or two

The other issue is that the pain-relieving aspects of the codine appear to have been hiding a couple of other problems.

Now that pain relief is removed I find that I have a fair amount of discomfort from the ileostomy, which largely seems to be caused by my trouser belt catching it when I sit up/down, move around etc. I’m going to have to see if I can find a way to make/attach some form of padding around the site of the ileostomy to minimise that. Fortunately I’m meeting the stoma nurses next week anyway, so hopefully they will be able to offer some form of “official” solution, as this must be a pretty common problem.

In addition, some discomfort in my shoulder which I’d previously put down to a simple muscle pull, has now reached a level of pain that is proving hard to put up with. My shoulder/arm aches pretty much constantly, and I can’t get comfortable either sitting, standing up or lying down – which obviously doesn’t help with the sleep/restless thing either! Deep heat, massage etc don’t seem to help, so I’m starting to suspect some form of trapped nerve. For now, I’m trying to get by with topical pain relief using ibuprofen and paracetamol, but to be honest, they don’t seem to be helping much, if at all.

The shoulder pain more than anything else has tempted me to simply start taking the codine again, but of course that doesn’t really help much in the longer term. It’s all rather frustrating, but I guess I’ll just have to hold on until I can see the doctors/consultants again next week, and hope that they can then suggest something (manipulation?) than can attack the root cause of the shoulder pain.

Linkage between food, lifestyle and cancer?

I came across this fascinating article on the Cancer Research UK website, which looks into the public perception of news that links food, lifestyle and cancer, and how that perception often causes us to ignore good, strong scientific evidence.

However, the part that most caught my eye was this:

On the other hand, consider the mammoth, careful, painstaking review of expert evidence contained in the WCRF report on diet and cancer from November 2007.
This report was written collaboratively by many scientists. It was not only based on research that had been done, but a whopping 7000 individual research papers that had been carefully reviewed, weighed, collated and assessed.

Now that sounds like something fairly authoritative, and worthy of a quick scan. And so it turns out.

The report is available as a free download, and really does make very interesting reading indeed. The entire document runs to some 550 pages, and goes into great detail on likely causes of, and inhibitors of individual cancers, which is of more use to people like me who might want to improve my chances of recovery from a specific cancer, as well as making the more general societal recommendations that would help reduce the incidence of cancers more generally.

You owe it to yourself to read the summary of recommendations (on pages 373-391) if nothing else.

UPDATE: It occurs to me I could summarise those general recommendations here, rather than making everyone go off and download and read the actual report, so to that end:

Body fatness: Be as lean as possible within the normal range of body weight (cf Body Mass Index)
Physical activity: Be physically active as part of everyday life
Foods and drinks that promote weight gain: Limit consumption of energy-dense foods, and avoid sugary drinks
Plant foods: Eat mostly foods of plant origin
Animal foods: Limit intake of red meat and avoid processed meat
Alcoholic drinks: Limit alcoholic drinks (< 4 UK units per day average)
Preservation, processing, preparation: Limit consumption of salt, avoid mouldy cereals (grains) or pulses (legumes)
Dietary supplements: Aim to meet nutritional needs through diet alone
Breastfeeding: Mothers to breastfeed; children to be breastfed
Cancer survivors: Follow the recommendations for cancer prevention

If you are suffering from cancer then you should probably still download and read the sections of the report covering your specific cancer, as there are usually special recommendations that are specific to that cancer in addition to these more general recommendations. So, for my colorectal cancer there are recommendations on dietary fibre intake, for instance.

My surgery in pictures

No, don’t worry, I haven’t suddenly laid my hands on a series of snaps taken by my surgeon!

What I have found is an online edition of the “Atlas of Pelvic Surgery”, which describes in a series of line-drawings and text how to perform a “Low Anastomosis of Colon to Rectum Using the End-to-End Surgical Stapler Technique“. Which I believe is the surgery that I went through. It’s both safe for work, and unlikely to be a problem for even the most squeamish of readers. Note that the diagrams depict a female body, but for our purposes and level of interest, that shouldn’t matter.

I found the article fascinating, and it’s amazing how clever techniques and tools enable these surgeries to take place. Of course, the article makes it look simple (a bit like the average Haynes manual does with car mechanics I suppose!) but it’s obviously much harder, as it took a surgical wizard a good seven hours to perform it on me.

6-week meeting with consultant

Today was my first follow-up meeting with my consultant; ie the chap who actually carried out my surgery for me. From his perspective this was the first step in seeing how I was healing, how I was managing the ileostomy, and starting to think about my ileostomy reversal operation.

It was all of those things for me too of course, but I also went armed with an A4 sheet of questions that I wanted to discuss. I am that kind of annoying patient I guess

The basic procedure was very straightforward; a physical examination of the wound and the drain site, and then an abdominal examination, followed by a digital rectal examination. The results of this are that I am healing extremely well, that there are no signs of problems with my abdomen at all, and the join between my colon and rectum (technically a “Low Anastomosis”) is also healing extremely well, with no signs of the major narrowing that can sometimes cause problems with this kind of operation. Which is extremely positive indeed.

Probably because of those positive results we discussed the fact that I am still relatively high output on my ileostomy, and still taking both loperomide and codine to control it. An option for me to consider is taking a short break from my chemotherapy to allow the ileostomy to be reversed early. However, I don’t think I feel comfortable with the thought of stopping the chemotherapy just to make my life a little easier, at the expense of going into slightly unknown territory as far as affecting the efficiency of the chemotherapy is concerned. So although I’ll talk to my oncologist about this next week, I think I’m going to just grit my teeth and get on with the chemotherapy & management of my ileostomy, and do the reversal at the end, as originally planned.

As a short-term goal I will try to take the codine out of my mix of drugs again, and see if I can still cope, as that will definitely help improve my quality of life and hopefully aid me in getting back to work again sooner.

I then got to ask some of my questions, and found that he had removed some 25cm of my colon, that the tumour itself is was 35mm x 40mm in size. It had been there as a tumour for at least the previous 12 months, and had probably been developing from a polyp for several years prior to that. Which is a sobering thought.

I got an outline of the on-going monitoring that I’ll need to go through (regular CT scans and then periodic colonoscopies), and of the ileostomy reversal operation (3-4 days in hospital, relatively minor operation, but with some risks from leakage, problems restarting my colon afterwards etc).

I also asked about various aches, pains and numbnesses that I’ve experienced, all of which turn out to be completely normal, though in the case of the numbness (on my left thigh) rather unusual. All will reduce or vanish to some degree over time, though as far as I am concerned, putting up with them even in the long term would still be a small price to pay to be cancer-free

I also asked about my participation in the LiveStrong event in Austin; his advice was very strongly to avoid doing it this year, and to consider doing it next year instead. Physically he felt it would be no problem, but he was very concerned about the potential for my ileostomy to start playing up, especially in high heat/humidity while undertaking strenuous activity. I’ve always said that I was going to do this treatment by the book, following my doctors advice no matter how much I disliked it. And that is still the case – so LiveStrong 2010 now looks like my target, if Mark is still interested in having a house-guest then?

The last thing I asked about was what part heredity plays in this, and whether my brother and my children will need some form of early screening as a result of my problems. It turns out that as things stand my brother should definitely have a colonoscopy as soon as possible, probably with removal of any polyps that are present, and my children should start screening (colonoscopies again) from when they reach their mid-thirties. In the longer term, this research looks like it might help target the screening more selectively. This would be good, as it could help my kids avoid any unnecessary procedures but for now the best we can do is line them all up for offers of places on an early screening programme.

Getting my brother to the doctor is likely to be more awkward. I suspect delegating that action to my sister-in-law is the correct option in this case, as he will (possibly) pay more attention to her than me.

Overall I’d class it as a really good meeting, with lots of positive news for me, and only the odd disappointment. Which is pretty good. So I’m currently celebrating with my first glass of wine since I left hospital, and then I’m going to try to get another good nights sleep!

Update: Didn’t have a very good night, and woke up with a mild hangover. Perhaps the glass of wine (admittedly a large glass) wasn’t such a good idea after all!

First full chemotherapy “rest” day

Today was the first full day of my chemotherapy cycle without any drugs. The difference was both interesting, and stark. No nausea. Hardly any tiredness. More energy and stamina to actually get some things done. I was more productive today (in terms of the little tasks and jobs I’ve set myself) than I have been in the previous week or so. Of course, I still had to take the ones that help me to manage my ileostomy (leperomide and codine) but it seems that (perhaps unsurprisingly) their side-effects on me are quite minor compared to the chemotherapy drugs.

So at the moment I’m really looking forward to the rest of my week without chemotherapy, planning how to make the best use of the time, all while slightly dreading the start of the next cycle, and the likely return of all my usual side-effects.