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.

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.

Recovery from chemotherapy (week 1)

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

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

Hiccoughs are gone. Good riddance!

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

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

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

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

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

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

My chemotherapy is complete

I just took the last set of tablets for my chemotherapy. For something that I’ve been looking forward to for so long, it turned out to be a bit of an anticlimax. I guess there is only so much meaning & emotion that one can associate with swallowing 4 large orange tablets!

Still the good news is that that phase of my treatment is now over. I’m one step closer to completing my treatment, and as all the side-effects start to fade, I can now start concentrating on the operation to reverse my ileostomy, hopefully sometime next month.

3 – 2 – 1 … start recovery!

Today is the penultimate day of my chemotherapy treatment. This morning I took my 3rd last set of chemotherapy drugs. I have another dose tonight, and the final dose tomorrow morning, and then I’m finished.

No more IV sessions; side-effects that will steadily diminish over time rather than getting more severe; and an immune system that will recover enough for me to go through the operation to reverse my temporary ileostomy. And then shortly after that, the ability to get back to work.

I can’t begin to tell you how much I’ve been looking forward to this.

Update on cycle 8 (part iii)

Not a lot to report on the side-effects front, other than the fact that the hiccoughs seem to have gone away. Everything else is continuing as I discussed in my last post. However, I had a really good weekend from a social perspective, though to counteract that, I had a less-than-fun experience managing my ileostomy. It’s all swings and roundabouts!

One of the reasons for the weekend being really good was that a friend I made in hospital got married on Saturday. He’s been concerned about being well enough to get married and go on honeymoon since I first met him back in March, but he’s stuck to his treatments, done as he was told (well, mostly!) and got well again. It was great to see him and his new bride looking so happy. And the contrast to how he looked back when I first met him in March when he’d just got out of intensive care, is staggering. So good luck Nick and Angie – here’s to many more years together!

The other reason for it being a special weekend was that we held a small family gathering to celebrate my eldest daughters birthday, which is actually later this week. She officially becomes a teenager (“Whatever!”) despite having been looking, acting and behaving like one for at least the last year already. Still, it was a nice opportunity for a large proportion of the family to get together around the table and take some time out together.

Unfortunately my ileostomy decided to intervene, with my output suddenly going extremely high. I’m not entirely sure what caused this, but I suspect a combination of something I ate the previous day and this cycles chemotherapy drugs finally kicking in. Whatever the cause, this resulted in my bag failing (never a nice experience) and thereafter I was having to empty the replacement bag almost constantly. Apart from being very frustrating and inconvenient, this also meant that I was dehydrating rapidly.

In addition, when my output goes very high it also makes me very physically tired, which on top of my recent lack of sleep meant I was struggling, and didn’t notice when I missed taking a set of my ileostomy management tablets. Which of course just made a bad situation a whole lot worse. Fortunately, having realised my mistake I was able to spend the rest of the day catching up with my tablets, which helped my output slowly drop back to more normal “high” levels.

In the end things finally got back to normal around 2am this morning, which means that I’ve actually had more sleep last night than during the previous few nights. And the really good news is that this morning I seem to be back to almost normal output levels again, which further reinforces the suspicion that the primary cause of my high output was probably something that I’d eaten.

These treatments must affect each person very differently, but I must admit that managing my ileostomy is by far and away the worst part of it for me. Still, with a little luck I’ve only about 6 more weeks before having it reversed. Which will be a real red letter day for me!

Update on cycle 8 (part ii)

Just a very quick update on progress, as I’ve relatively little to mention.

So far there have been no major changes in the side-effects of this cycle since my last report, apart from my hiccoughs. Unfortunately they seem to have got significantly worse, and in fact are turning out to be worse than on any of my previous cycles. I’m finding that they are definitely triggered by eating or drinking anything, as well as frequently coming on spontaneously too. So the worst of both world there. They are also much worse in the evening (though I have no idea why) and I seem to always get a major attack after taking my last set of tablets each night around 11pm.

Last night I was awake till nearly 4am with them, and it was 3am the night before. As anyone who’s had long-running hiccoughs will testify, the actual attacks themselves are not very pleasant. But the fact that I’m now also losing so much sleep is proving hard to cope with too; my patience, even over the smallest of things, is not what it normally is, or should be.

And of course the people who really have to bear the brunt of my irritability are my long-suffering family, who are being tested even more this week than normal, for which I feel both guilty and very sorry.

Update on cycle 8 (part i)

So, a day and a half have passed, and as seems to be the norm, the symptoms have changed and morphed. No new symptoms though, so I know what to expect, and to some extent how to mitigate them. So not all bad news.

Tiredness is still present, but not as bad as when I first came home from the hospital. I suspect that the extreme tiredness I experienced then is quite temporary and a result of the infusion. I am also getting up earlier now too, as I’m trying to pull my weight and run the kids to the bus stop and school so my wife isn’t quite so overloaded in the mornings. That and the fact I’m getting to bed later (see below) means less sleep than I’ve been used to, so perhaps that’s also contributing to my general tiredness. The good news is that I can just go back to bed and sleep as required, so it’s simple enough to cope with for now.

Hiccoughs are back! Unfortunately they’re in the “long running attack” form, which is not good. They still seems to be triggered by me swallowing anything, and unfortunately my last set of tablets, which I take at 11pm, seem to be triggering hiccoughs that then run on for several hours into the night. Last night was 3 hours worth, which wasn’t much fun. It also means that I’m not getting to sleep as early as I’d like now that I’m trying to get up earlier and help out with the school run. Still, if these hiccoughs follow the pattern of previous cycles then hopefully they’ll fade away during the first week or so of the cycle.

My peripheral neuropathy is still the worst that I’ve experienced to date. My hands and fingers in particular got to the point where they were so painful that I ended up spending most of yesterday with skiing gloves on. I have to say, they might look silly, but the relief from the pain is wonderful. Unfortunately the gloves do rather limit what I can do; typing, reading, any sort of “fine tinkering” is out the question with them. My feet continue to be uncomfortable, and to blister and peel. As with previous cycles there’s very little I can do except put up with it and ignore it as best I can. The “slush puppie” sensations when drinking anything cold continue as with my previous cycles. I’m back to drinking a lot of tea, and taking my tablets with warm water again. I’m looking forward to being able to drink lots of long cold drinks, stuffed full of ice when I finally get off all these drugs!

I currently have very little sensation of taste again. C’est la vie. Combined with a complete lack of appetite, it’s back to eating mechanically again. While trying to look for the silver lining, I’m assuming that this is probably good for the diet anyway.

The inability to get warm seems to have gone away again. I’m wondering if that was another side-effect of the IV infusion. Either way, it’s a welcome loss, as it wasn’t much fun being curled up under a heap of blankets, feeling freezing cold and shivering, despite knowing that the temperature was perfectly normal.

The three bags of glucose seems to have done the business on my arm. The pain and swelling are going down fast. The sensitivity in my arm is much reduced, and I can now wear sweaters etc without discomfort. Looks like it will hopefully be all gone within another couple of days. So saying, the friend I’ve not seen for a few weeks who greeted me with a firm handshake yesterday didn’t get quite the expected reaction from me. He was mortified when I explained the situation too. So sorry John, I should have “ducked” your handshake and explained the situation, but I just didn’t think about it at the time!

Finally, I’ve kept the best news to last; my ileostomy output seems to have dropped on this cycle for some reason. I don’t actually care what the reason is, it’s good enough for me that it’s just dropped. It’s making the day to day management of my hydration etc much easier, and making life in general much more pleasant. It’s also a huge relief, as I would likely have been in real trouble if my output had gone even higher than it was on the last cycle.

If things continue like this through the rest of this cycle then I can see how to cope. Then I just need to start gently pushing myself back to full health; raising my exercise levels, allowing the drugs to steadily work themselves out of my system (apparently it can take several months for them to fully dissipate) and getting myself ready for my ileostomy reversal operation. That is rapidly becoming my next major target – as that is what forces me to take high doses of codeine, which is what prevents me from getting back to work and a normal life.

So, come Christmas I ought to be fully replumbed, off almost all my medications, and getting ready to go back to work. I feel like a kid again, looking forward to the arrival of gifts from Santa Claus. Except in my case the Santa Clauses all work for the National Health Service!

Start of final chemotherapy cycle

Despite the best laid plans of mice and men, I ended up in hospital for most of the day today. Unfortunately there were multiple consultants in the hospital running their private practices, and the nursing staff were stretched to the limit again. Despite getting my bloods done yesterday, and being cannularised almost immediately, it still took 90 minutes before my oxaliplatin turned up. Add in three hours infusion, and some messing around at the end, and it was another 6 hour session.

Still, it’s the last one, thank goodness. Just need to get through taking all the tablets over the next fortnight and I will be finished. Symptoms are the same as previously, but considerably more intense again.

Tiredness is very pronounced. I got home and had to go straight to bed. Will be interesting to see if this continues through the cycle, or if it’s just a short term effect from the infusion itself. At the moment I suspect the former.

The peripheral neuropathy is very bad. My fingers, hands, feet and throat are all playing up much more badly than before. My fingers are actively painful, and typing this is difficult. I have little sensation in my fingers, but feel sharp pains in each finger as I strike the keys on the laptop while typing. Walking is very uncomfortable. I hope this eases off, as it will be very difficult to cope with everyday tasks otherwise.

I’m also currently shivering. I can’t seem to get warm again. I know the temperature is actually comfortably pleasant at the moment (23-25c depending on which currentcost I trust!), but my body doesn’t seem to agree for some reason. I’m going to curl up under the blankets again after I finish typing this to try to get warm.

No idea about taste yet. I have absolutely no appetite at all at the moment.

Also no sign of any hiccoughs yet. I suspect that if I do experience them, they will be triggered by eating and drinking; I’ll let you know when I finally get to that point.

Despite getting nearly 3 bags of glucose to the 1 bag of oxaliplatin, my arm is very sore and tender. Wearing a sweater is very uncomfortable where the sleeve touches my arm. However, I need the sweater for the warmth, so no real choice there. Still, at least I remembered to take some medical adhesive remover (basically an alcohol-based spray) to the hospital, so I could loosen all the sticky tape that the nurses had secured the IV lines with. Last time when they pulled all the tapes off I was close to tears. This time I was able to loosen all the sticky tape first, reducing the pain substantially. Interesting that none of the nurses knew of the existence of these sprays. Score one for me.

The elephant in the room is going to be how this cycle affects my ileostomy. I was high output for most of the last cycle. I really hope that it doesn’t get any worse on this cycle, as I’ve very little room left for manoeuvre. Still, I figure I ought to be able to put up with pretty much anything for a fortnight. Just a matter of focusing on the end result, and getting on with life, one day at a time.

I’ll post some more in the next day or two as things start to (hopefully) settle down.

Cleared to start cycle 8

I had my blood drawn this morning, and met my oncologist this evening. My white blood cell count is fine, so I’m cleared to go ahead with my final chemotherapy cycle tomorrow.

I’ll have one more meeting with my oncologist in about a months time to see how I’m recovering after the end of the chemotherapy, but he tells me that he is very pleased with my progress to date. Apparently he “threw the works at me” in terms of the strength of the treatment, and I’ve been a “model patient” in terms of how I’ve coped with it.

Which is nice to know, as I don’t think I’ve ever been a model anything before!