Update on cycle 5 (part iii)

My arm seems to finally be settling down – the swelling is subsiding, and the general pain and tenderness is finally fading away. I still have some pain at the point of the IV itself, and a rather strange “lump” in the vein near to that point, but overall it’s no longer painful. I suspect the lump is where the cannula was pushed through a valve which has been damaged in some way. It’s not painful, and doesn’t seem to have any ill-effects – it just looks a little odd.

My peripheral neuropathy continues unabated in my fingers and hands, though the strange effects in my throat seem to finally be fading away now. Just as well given the horrible weather which we’ve been experiencing – if I go outdoors my fingers quickly get cold, and I’d hate to have the same happening to my throat too. As it stands I can certainly now drink colder drinks without too many problems, though ice-cream is still beyond my capabilities. Of course, I consequently have a real craving for some vanilla ice cream, but as the Stones would say, you can’t always get what you want

The hiccoughs have now completely gone away. They lasted only a day beyond my last update, which is great as they were quite frustrating to deal with on top of everything else.

Incidentally, I notice that I’ve not mentioned one of the stranger side-effects I experience; where everything tastes of nothing (or rather it tastes so blandly metallic that it may as well taste of nothing). This cycle has been worse than normal for this, and I’ve found it hard to motivate myself to eat much at all. It’s funny how even your favourite foods suddenly become completely uninteresting when you can’t taste them. This also ends up being quite depressing, as there are only a limited number of pleasures in life at the moment, and having my love of good food taken away seems like yet another major loss. My wonderful wife has been trying out new recipes to see if they are more suited to my current condition (think spicy!) but unfortunately I generally still can’t taste them, which is all very frustrating. Meanwhile I’m working on the basis that if nothing else it’s probably helping with my long term diet goal. There is always a silver lining …

The tiredness and insomnia have taken a toll over the last few days. The good news is that my insomnia has faded away considerably; I’ve still been waking for an hour of two each night, but I’m fairly sure that this is more related to dehydration and thirst than anything else. I found that once awake if I made myself a couple of cups of tea I was able to get back to sleep quite quickly; if I didn’t then I’d be awake and listless for most of the night. A case of my needing to listen more carefully to my body, and then act on it.

The tiredness however has continued unabated. The last couple of days in particular have been especially hard – I’ve been sleeping almost constantly, both day and night, and waking simply to take tablets and get back to bed again. I find it hard to understand how I can sleep the 15+ hours a day that I’ve apparently needed. For someone who normally sleeps a token 6 hours or so I find such huge amounts of sleep incomprehensible. Still, there’s no doubting my need for it – I’ve barely been able to keep my eyes open.

Today however, I actually woke up at a reasonable time, feeling relatively refreshed, so I’m planning to try to get out the house and go for a walk along the seafront to see if I can blow out the cobwebs. I’m hoping that with a little luck this may be the final major kick of the chemotherapy side-effects for this cycle, just leaving me with my normal ileostomy medicines to cope with. If so then perhaps I can start to plan on a week or two of being more in control, which will let me get on and do some things both for myself and with my family, which will be nice.

Contact lens update (part ii)

Today seemed like a good day to try out my newly arrived mono-vision trial contact lenses. It appears that the optician takes my “normal” distance prescription, and then applies the presbyopia, or reading component to the lens for my non-dominant (left, in my case) eye. My dominant (right) eye gets full-on distance correction, but no reading component at all. The result of this is that I can see distance perfectly through my dominant eye, which is great for driving, but I have no close-work correction in that eye at all. My non-dominant eye has perfect reading correction, and in my case, about 75% distance correction too. Good enough to drive with just that in an emergency for example.

My brain then gets to sort out the scene from the resulting visual inputs.

So far after an hour I can honestly say that the effect for distance is better than the significantly more expensive multifocal torics that I was trialing earlier. The correction is just infinitely better, with very little sign of blurring at all. The resolution of small detail at distance still isn’t quite as good as with glasses (a result of the non-dominant compromise lens I guess) but for most of what I wear my contact lenses for, this is an improvement over the multifocals.

Middle-distance working here on the computer is also fine, though there is a slightly “otherworldly” feel to the view of the screen which I’m assuming is probably the result of my brain still compensating for the new prescriptions. If it settles down (or I get used to it) I suspect it will be perfectly satisfactory.

Sadly, the really close-vision work with small type-faces is not as good as the multifocals. The vision through those was simply spectacular, whereas with the single vision lens (at the moment) I still seem to have some blurring. However it’s extremely early days yet – with only an hour for me to get used to the new prescription, and the close-vision change being the most dramatic, this is what I’d probably have expected. It will be interesting to see how I’ve adapted in another couple or hours, and then again in another couple of days.

At the moment I’m sufficiently impressed with this set-up that I’m going to stick with them for a few days, and see how they work out, particularly when driving at night. If the close vision improves even moderately then I think for my current needs this set-up could be better for me than the multifocals, which is both interesting and wallet-friendly.

If not then it will be interesting to work out what to trial next. If, as I suspect, the close-vision is the problem with the mono-vision lenses, then I think the next best option ought to be be to try a mono-vision distance lens in my non-dominant eye, with the varifocal in my dominant eye. Unfortunately however, I don’t have the right lenses for that. My options are (a) to put the compromised “reader lens” in my non-dominant eye, and the varifocal in my dominant eye – which would give me poor distance vision in both eyes again, or (b) go for the distance lens in my dominant eye, and the varifocal in my non-dominant eye, which I suspect may tighten up my distance vision a little more, but make no difference to my close-work. Interesting choices.

I wonder if this could end up with my needing to get yet another trial contact lens to test out a “reading-compromised” mono-vision lens in my dominant eye, with a varifocal in my non-dominant? Or, could it simply mean that I’m just too fussy and need to go for proper mono-vision distance correction, and carry a set of reading glasses too?

Decisions, decisions!

Update on cycle 5 (part ii)

Four days & nights have passed; the main problems continue to be the pain, sensitivity and swelling in my hand/arm from the IV, tiredness and insomnia (always a great combination!), hiccoughing attacks, and the peripheral neuropathy, which seems to be affecting both my hands and my throat this cycle.

The pain & sensitivity in my hand is slowly fading away; the swelling is still there though I think it is also starting to reduce now. Hopefully things will be back to normal over this weekend.

The tiredness and insomnia is becoming a real problem. I feel completely exhausted. Come the evening I can barely keep my eyes open, and yet by the time I’ve climbed into bed I’m suddenly wide awake again. I’m struggling to get more than a few bare hours of sleep, and most of those are interrupted. I’ve always been a bit of a night-owl, so in some ways I suspect this isn’t affecting me as badly as it might affect some people, but I’ve noticed that the cumulative affects are building up. I’m struggling with a general feeling of apathy, and I’m definitely feeling more irritable and bad-tempered (some would say even more so than usual!) over even stupidly trivial things that wouldn’t normally bother me.

I suspect having no real targets to focus myself on, and the current stress-inducing changes that IBM is making to my pension scheme (which I can also do nothing about) is not helping matters either.

The attacks of the hiccoughs are a strange combination of the long-running overnight attacks I noticed early on in my treatment plan, and the more recent short & sharp attacks of cycle 4. Often I’ll find that I have a short, sharp attack which then dissipates into a long-running, less-severe attack, especially later at night. This often then starts to interact with the insomnia problems too. So far I’ve not found any workable remedy to these attacks beyond simply waiting for them to fade away.

No change in the peripheral neuropathy so far; I still have constant mild symptoms, which are significantly exacerbated as discussed in my last post. One thing I do suspect however, is that triggering the peripheral neuropathy in my throat seems to then be followed by an attack of hiccoughs. I’m not convinced that they are tightly linked, but I do suspect that it increases the chances of an attack of hiccoughs. For the time being I’m avoiding any cold drinks. I’m limiting myself to room temperature water to make up into squashes and to take my tablets with, but squash just doesn’t taste as nice when tepid. My tea consumption has gone up pretty dramatically as a consequence, which may also be contributing to my insomnia, but I need to drink enough to keep hydrated so my options are somewhat limited in this space.

And with that, the night is nearly over, so unsurprisingly I’m now feeling tired again. Time to try to squeeze in a couple more hours sleep before the family all wakes up again.

Putting the “Va Va Vroom!” back into life

My toy car got a further injection of work this afternoon when an old friend popped by to give me a hand modifying the brackets on the axle to make sure that they could no longer bind on the strut mountings. The end result from the driving perspective will be minimal – perhaps a slightly better ride over particularly poor road surfaces, but given that I tend to avoid those anyway (the suspension is set up for smooth roads and race tracks) I don’t see this mattering much.

It will however, stop the axle eventually damaging the struts, which apart from being a generally good idea at the best of times, also means that the nice man at the MOT station will be a lot happier with the rear suspension, and is therefore much more likely to give me the piece of paper I need to get the car taxed and back on the road again.

There are (as always with kits like this) a lot more things that need doing or checking, but most now need the car back on the road before I can progress them. For example; the speedometer had to be replaced with a new electronic one, and I’ve made up the mountings for the magnetic pick-ups and mounted the magnets on the propshaft. It currently works really well at the up to 5mph I can achieve on the drive, but I’m concerned at how well the magnets will remain attached to the propshaft when it’s operating at higher revs. Time will tell on that one, but if it doesn’t work out then the next attempt will be to introduce a slotted plate between the propshaft and the differential, and use a reluctor pick-up instead. More expense, and potentially another complete strip-down of the interior to get access, which would be annoying to say the least.

However, the next priority job is to get the car onto a rolling road, get the 3D ignition remapped, and re-jet the carburettors. The car is definitely running lean at low revs, and rich at high revs, and the response to a snap opening of the throttles is very “fluffy” which means the accelerator jets are out too. Finding a good rolling road operator who can cope with mapped ignition and carburettors at the same time is getting difficult, but apparently there is a good one over at Thruxton who is worth trying.

But first I need to get it insured, MOT’d and taxed though. That should keep me busy for the rest of the month.

Update on cycle 5

It turns out that the hand that they put the cannula into is not only tender and painful, but is also swollen. I can tell this because my normally loose (since losing all this weight) wedding ring is now impossible to remove. After a day and a half I’d have hoped that this would be better than it is by now. I think I need to be a little more “proactive” at my next IV session about ensuring that we put all the piggy-back glucose into me, and getting my heat pads no matter how busy the nurses are. It seems to make all the difference between a good and bad outcome.

I also spoke too soon about the lack of hiccoughs. I started hiccoughing around 11pm last night, and finally gave up and went to bed (still hiccoughing) at 3:30am. Woke up to more hiccoughs at 6am, got back to sleep and finally woke up at 9am hiccough-free; for now, anyway. Lets hope this isn’t going to be like cycle 2/3 where I had a series of extended attacks of hiccoughs all through the night. I’m already tired enough as it is without losing sleep too.

The peripheral neuropathy is also much worse this cycle. I have mild effects from it all the time now, irrespective of whether my hands and throat are cold or not, though the cold does exacerbate the symptoms considerably. Drinking a cold drink from the fridge now feels like I’m trying to drink something like a slush-puppie (for those who remember such things!). My fingers have a faint tingling sensation all the time, with a more unpleasant pins and needles type effect when they get mildly cold (such as washing under insufficiently warm water), and positively painful when they get colder, for example from delving into the fridge or freezer.

Still, I’m over half way through the chemotherapy now, and by the end of the year my whole treatment plan will be complete, at which point I will simply have regular check-ups to deal with. Bring it on!

Initial impressions of cycle five

Since I had my blood tests done on Monday (all very good, according to my oncologist) I was able to start the IV almost as soon as I arrived at the hospital. I had a cannula fitted in the back of my left hand by the same doctor who fitted the cannula last time – Martin, from South Africa.

One interesting piece of information obtained from the nurse who did my observations; my blood pressure was 105/58, resting heart rate of 70bpm, and oxygenation of 98%. Which although still in the “normal” range, is right at the very bottom of that range, and fairly low for someone of my age. I do wonder if it might be time to consider talking to my GP’s about my blood pressure medications again, and whether or not I still actually need them, as I’d rather not be taking medicines unnecessarily. My temperature was also a touch high – 37.3C, when my norm is around 36.4C. Given that I’ve been snuffling into tissues for the last couple of days this is probably to be expected. In any case, it wasn’t enough to cause them to delay my treatment – which was good.

The infusion went very well, taking a little over 3 hours, though we didn’t get the flow-rate quite right on the glucose “piggy-back” bag, so the chemotherapy medicines were more concentrated than the last time. The ward was also very busy, so I wasn’t able to keep the heat packs on my arm as much as normal. The combined result of this is that the sensitivity and pain in the arm is much worse than the last few cycles, though nowhere near as bad as the first cycle. Hopefully it will fade over the next couple of days.

I do wonder why they can’t just make up a more dilute solution for me. The solution is always 260mg of oxaliplatin in 500ml of glucose solution, which is then piggy-backed with another 500ml of glucose solution. So why not simply make up 260mg of oxaliplatin in 1000ml of glucose, and avoid all the messing around with secondary lines, matching flow rates by guesswork etc etc? Most strange, and probably one to mention to my oncologist next time I meet him.

Side effects are as per the previous cycles, with the tiredness significantly worse than cycle 4. I had to go straight to bed when I got home as I could barely stay on my feet. Apparently I looked as white as a sheet. A couple of hours sleep had me back on my feet again, though still feeling very weak and tired.

Otherwise, I’m still seeing all the main cumulative side-effects. The hiccoughs are relatively minor so far, with no major attacks so far. The peripheral neuropathy is definitely present, but so far doesn’t seem as bad as cycle 4 – which is positive if it stays that way.

Bag failures

First thing on Monday morning I managed to talk to the stoma nurses about my problems with my ileostomy bags, and they asked me to drop in to see them, and made space for me at 1:30pm that day. As it happened, I was to’ing and fro’ing past the QA hospital to get blood tests at the Spire hospital anyway, so a little fine tuning of the blood taking appointment meant that I could fit everything together without yet another 50 mile round trip, which was cool.

The stoma nurse was really helpful, and had a good look at my bag, how it was fitting, and then the stoma itself, and the how the flange on the bag was fitting around the stoma. Her assessment was that my stoma is indeed herniated (though not too badly) which explains the increase in my apparent waist size. It also explains why the bag is harder to fit to the abdomen than before. In addition, the shape of my actual stoma has changed slightly, making the bags fit less well (all the bags are custom fitted to the patients personal stoma size and shape). In her opinion this is most likely the key reason for the bags to be failing.

She’s given me a selection of options to help with the problems. The first is a new template for the shape and size of my stoma. She’ll send one to the medical supplies company so new bags will come pre-fitted to my new shape stoma, and another for me which I can use to adjust my existing bags with a pair of scissors. It sounds fairly Heath Robinson-ish, but in practice this is how the custom fit is achieved. Low tech is sometimes the right tech.

I’ve also got some reinforcing strips which are used to more securely “glue” the bag to my abdomen. A mixed blessing in some ways – they’ll make the fit stronger, but they’re awkward to fit in place, and look like they will be a devil to remove in due course. However, they may be the answer when my output is high.

In addition she’s given me some larger bags to try for those periods when my output is particularly high. They have a larger flange which will be more “sticky” than the normal sized bags. The downside to these is that (a) fitting the larger flange is again going to be more awkward, and (b) they will put more strain on the hernia as they fill up and get heavier.

Finally, she’s given me some hygroscopic gel which can be added to the bags. When the output is high and watery these will help to thicken the contents of the bag making it easier to detect the fullness of the bag (especially while sleeping) and easier to manage too.

If things get worse on the hernia front then there are more options available (special straps and belts to help support the bag and the hernia) but apparently I’m not bad enough to need anything like that yet – fortunately! So for now it’s a case of seeing what helps me to best resolve my problems. I’m hopeful that simply correcting the fit of the bag to the stoma will make a major improvement, as I can see how that is critical to the effectiveness of the seal. Next up will be the supporting strips & possibly larger bags. The gels will only help with a specific problem, but may be useful once I’m experiencing it, so I’ll hold them in reserve for then.

In the meantime the fact that the stoma is herniating is not unusual (apparently this happens in up to 50% of patients with stomas) but does mean that I’m going to have to take some extra care not to put any more strain on my abdomen. So, although my strength is back to normal, I’m going to need to remember not to do any heavy lifting again. Which is a bit of a nuisance. If I look at the risk factors for hernias I can tick four; surgery, weight loss, age and congential (my father had one a few years back) so I guess I ought not to be too surprised. The stoma nurses are obviously unconcerned at the moment, and as I’m due to see them again in August, and my surgeon in September, they’ll obviously monitor the situation for me. However I’ll keep a closer eye on that whole area of the abdomen from now on too.

Protracted start to cycle 5

I suppose that today is really the start of my fifth cycle, although I don’t actually get the medicine until tomorrow. My daughter has her “school leavers service” at our local church tomorrow morning (she moves from Junior to Secondary school this September) and is very keen that I attend if at all possible. Normally this would clash with my intravenous infusion, but by getting my blood tests taken & processed today, I can go to her service tomorrow morning and then turn up “late” to the hospital and still fit the infusion in.

The downside is that I need to get my bloods drawn this morning, then go back for my appointment with my oncologist this evening, and then back again tomorrow for the IV – so a lot more to’ing and fro’ing. However, the upside is that my oncologist will have seen all my most recent blood test results (they process them on-site in their own haematology lab) so we’ll be able to have a more up-to-date discussion on how well I’m getting on with the chemotherapy.

And it will be great to attend A’s leavers service; they’re normally very emotional affairs, and if she wants me there that’s the least that I can do for her.

Not a great day

I ended up getting up several times in the night last night to empty my ileostomy bag. I suspect it was something that I ate that pushed my output up, but the end result was that I needed to get up every couple of hours. Which would have been OK except the bag then failed just before 6am this morning. Which is really not the best way to start the day.

And then the new bag that I replaced that one with failed in the middle of the afternoon.

Needless to say, I’m tired of this game and more than a little fed up. When you can’t depend on these things the last thing you want to do is go out or do anything that might provoke an early failure, which means that I’m tending to confine myself to the house, which doesn’t make for my being a very good husband or father at the moment.

I’m hoping that this latest bag will survive a bit longer than the previous ones. In theory they’re “guaranteed” to last 3 days, and with proper use, a fair bit longer. In practice I change them every other day anyway, but I’m still trending towards a failure or two each week, which is just miserable. Either this batch of bags are faulty, the change in shape of my abdomen or the way I’m using the bags is causing problems and I’d like to know which so I can resolve it. However, getting hold of the Stoma nurses has proved awkward, with me only being able to leave messages on their answer-phone. And so far they’ve not returned my calls.

Perhaps the answer is a surprise personal visit to see them.

Extended warranty

As many of you will know, I have a “toy car”. This seems to spend more time in the garage gathering dust than actually on the road, and from talking to a lot of owners, this isn’t unusual. It is however, annoying. Mine has been off the road for the last year or so, mainly waiting for me to fix a problem with some brackets on the rear axle that would prevent the car passing it’s MOT test. It’s also needed a couple of other things done to it that required the engine and gearbox to come out the car, which have meant that most of the car has been in pieces.

My cancer treatment hasn’t exactly sped up the process of getting it put back together again.

However, over the last couple of weeks I’ve been getting increasingly frustrated with keeping myself occupied, and so I’ve been trying to work on the car when I’ve felt up to it, slowly working towards the longer term goal of putting the car back on the road before the summer ends. Given my relative lack of strength and stamina still, progress has been painfully slow; I’ve managed half an hour here, half an hour there on it, but it has (just!) been progressing.

Yesterday was a red-letter day though – I finally got the car to the point where it should be possible to start the engine again. So I got the keys, turned the ignition, let it prime the carbs, and then turned the key to crank the engine, only to hear the click of the starter relay and nothing else. 5 minutes trouble-shooting showed that the maintenance-free, 4 years guaranteed battery was as dead as the proverbial dodo. And that was after only 3 years, a large chunk of which has seen the battery disconnected and on a shelf.

Fortunately I kept the original receipt, and on taking it back to Halfords (where I expected to have a huge argument) I was pleasantly surprised to find that there was no quibbling whatsoever. They tested the dead battery and replaced it with a new one on the spot. The battery that I had was no longer available, but they provided me with the nearest equivalent and some adaptors for the connector posts, which have changed shape, all free of charge (no pun intended!).

So top marks to Halfords for an excellent warranty on their battery, which saved me from having to spend some £90 on a new one. Oh – and well done me for actually filing the original receipt somewhere that I could actually find it again

Update: This afternoon I finished putting the rest of the car back together before installing the new battery and retrying to start the car. All the interior is back in place, the new 4-point harnesses are fitted, and (as far as I can tell) the only thing left to do is to grind down the axle brackets to allow better location of the dampers. That’s ultimately a two person job, which I’m hoping to finish late next week, so in the meantime I tried starting the car again.

Va va va va vrooom, Vrooom, VROOOOM!

After a year off the road in pieces, it was so good to hear the car start up on the first attempt that I celebrated by driving it up and down the drive a couple of times. Now I just need to sort out the axle, and get it taxed and insured so I can drive it on the roads again!