Your basic cancer is not so bad these days — it can be seen coming and chopped out. It's the Chemotherapy that's the real, tedious hassle.
A couple of people have suggested one ought to keep a journal of life under the regime of poison. I think the idea is partly for emotional debriefing, partly as a log to spot patterns of things that make it better or worse. So here's a start.
Day minus 2
Spent the morning having a PICC line inserted (which took two attempts) and signing my consent to have my body ravaged by poison.
There may be a few cancer cells that survived the radiotherapy and surgery, and these could be roaming around my body looking for a place to wreak havoc. So, taking a sledgehammer to a proverbial nut, modern medicine is going to (carefully) flood me with poisonous substances for six months in the hope of killing off the little buggers. I had to sign a consent form for such extreme tactics. I also had to listen to a long list of possible side effects and things to avoid: ill people, cold things, fast food…
The PICC line is a narrow plastic pipe going through the skin of my upper arm, into a vein and straight to my heart. Very handy for taking frequent blood tests or for delivering medicine. The junkie's dream! There are alternative drugs in pill form but apparently they can cause bad diarrhoea and are particularly bad for controlling a stoma, so they ruled that out for me in the end.
Day minus 1
The weather was at its best for a while and with a grim few months ahead it seemed like a good time to do something fun. I stood up and somehow pulled my who-knows-what-it-is in my back, again :-(
Spent the rest of the day doing not much. Bah!
My lovely wife, J. took the opportunity to do too much cleaning and cooking instead of relaxing; and I feel bad for not being able to help.
Chemotherapy begins. First, anti-sickness tablets and steroids for some other side effect. Then the PICC line is checked and flushed and I begin a two hour drip feed of Oxaliplatin. I had brought stuff to read, eat, listen … but didn't need much. There was plenty of comings and goings and this is all new to me: although it's pretty horrible, I'm finding it interesting!
After that, I got a pump on a belt with a feed hooked up to my PICC line giving me Fluorouracil. I have to wear this for 46 hours straight. Now we can go home.
Outside the hospital, I feel fine. Not tired or sick. The cold air makes my fingers tingle; this was something to be expected. I know I should have brought my gloves but it's only a couple of minutes walk to the car and I'm glad to experience it so I know what it is, also surprised it happened so quickly considering it's the only noticeable side effect. I'm also glad to be out of the too-warm hospital; a fine drizzle refreshes my face.
We get a cup of tea at home then walk out to do a few errands such as buying a thermometer as I'm meant to keep an eye on my temperature now. Of course, I am wearing my hat and gloves.
The drizzle still feels pleasant until I discover it doesn't exist! Like the tingly fingers, this is just a symptom of neuropathy. Yuk. Not unpleasant in itself but a sign of underlying nastiness.
Watched a bit of telly and read a bit, then did a bit of vacuuming the builders' dust off various carpets and stairs; and half an hour of lying down, just in case. My temperature is 36.8C.
In the evening, J. was going for a meal with friends and on the way we both popped into a neighbours' get-together meal with everyone from the street. It would be a shame to miss it completely but J. had a long-standing date and I was theoretically not up to it. In fact I felt pretty good but don't want to push it and don't want too many people around me with potential germs. I stayed about an hour.
I drank a glass of wine there and had a little food. Since surgery, I've had a few drinks but don't really feel very safe with them because of the watery-stoma effect rather than worrying about effects of alcohol. All day I have eaten little and often, more so than usual due to the unusual activities. Plenty of carbs.
Since leaving hospital I have gradually got into the habit of taking (prescribed) loperamide to slow down the stoma. In theory, eating lots of carbs should do it, but often doesn't quite manage. I've been having 3 doses a day, spread across the whole day which seems to be OK. Today I'm having 4 as the new drugs are likely to exacerbate things. We'll see.
My temperature tonight — 36.2C. The thermometer bleeps because that's too low but I feel fine and it was also too low most of the time I was in hospital. Maybe that's normal for me?
Temperature 36.4C. Still cold? I still feel fine.
I woke up early thinking about statistics. The "reason" given for recommending chemotherapy was "a 10% decrease in the risk of cancer returning". I wrestled with that for an hour trying to work out why it disturbs me. It implies all sorts of other statistics and assumptions they are not telling me; on its own, it means very little and just confuses me. What they should say is that statistics show that these drugs will improve my quality of life in the long term. And that's all I need to know.
Today I have to start taking steroid and anti-sickness tablets. OK till mid-afternoon then I start feeling pretty tired. That's a shame 'cos a friend came round and I nodded off mid-conversation!
Temperature still 36.4C.
Skipped my breakfast loperamide as the stoma bag has been very sticky lately and perhaps doesn't need that extra help after all.I feel awake this morning despite getting up an hour early to celebrate spring. However I am not quite myself in some indeciferable way.
My flourouracil pump should be nearly empty but it's not. Have I managed to block it somehow? The district nurse came round to remove it and found the line was kinked near the entrance to my arm where it was hidden by tubigrip and where I hadn't moved anything or bothered to check it. Aha! So I have to wear it for another day and try to spread out the steroids etc. to cover the extra period.
Today I have been a bit perkier. Done a few useful jobs about the house and not fallen asleep although I have had several extra sessions of sitting or lying down for ten minutes rest.
Temperature 36.2C … oops.
Got up early to do too much, considering my condition, but all went well. By 3 o'clock though I was pretty tired out physically although my brain seems to be wide awake. District nurse has taken away my now empty pump and I had an hour or so snooze. Still tired, but having a look at some bits of work stuff.
Slept really badly last night despite tiredness. Had to get up early for J's hospital appointment and now very groggy sitting around waiting. My brain is awake in a whizzy kind of way and feels alert. I just feel ill, I suppose.
Temperature seems to be even lower. J's was too, so probably a rubbish thermometer.
Slept much better last night and felt generally improved all day. Managed to be quite active. But my stoma has been even more active this afternoon for no apparent reason, despite plenty of carbs and not much to drink, so I've taken extra loperamide and see how it goes. Oh dear, just before bed, my stoma bag got so full it came unstuck. Not too drastic, just annoying.
5:30am woken by a damp sensation — stoma bag filled to bursting again, and still really wet. And I was having a really good sleep! So had another impromptu shower and back to bed for a while.
District nurse came to check my PICC line. All fine. Nothing enlightening to say on the subject of stoma output or poor-quality thermometers. Stoma well-behaved this morning, but then I must be about empty.
Went out for lunch for the first time in ages. Luckily no stoma problems and I enjoyed food and beer.
Overall today I've eaten steadily but not large amounts and not much carbs for tea so having extra crisps in the evening. I've had 5 loperamide today altogether — more than ever but output still very wet :-(
Day 8, 9 10
Two more nighttime accidents despite plenty of carbs and loperamide. On reflection, I think I'm just getting used to the stoma bag so I'm less likely to be woken by it. I'm sleeping better so it gets more chance to fill up. For the first few weeks I was waking up just about every night and emptying it at about 4am; now I sleep through and it fills to capacity and beyond.
On Easter Day we were invited to have brunch and slob around at A's. I had decided to give loperamide a miss as it doesn't seem to be doing much, ate a fair amount of bread but lots more orange juice and cava than I would normally risk. All was good, stoma-wise. Had pasta for tea and only a couple of cups of tea in the evening. Output still a bit watery at bedtime so I had two loperamide and set my alarm for 4am.
At 4am the bag was only half full and a "nice" consistency. Possibly not at risk of bursting after all but you never know. At 9am quite thick output, possibly even too stodgy!
Recently I haven't been terribly tired on the whole, but ready for bed by 10pm despite not being anywhere near as active as normal. The only other side-effect seems to be a dry mouth which I put down to loperamide more than chemotherapy, but mouth problems are supposed to be a common one, hence the mouthwash regime (which I remember once a day at least, rarely three times).
After a bedtime loperamide dose (3!), had another trouble-free night. I woke just before my 03:30 alarm and found my stoma behaving itself so I didn't need to get up until a more sensible hour. Things seem to have calmed down.
I had to get up in the night again, but no emergency. I've been risking having a beer or wine in the evening the last couple of days to test the wateriness and windiness. Last night I had probably 3 glasses of wine and plenty to eat so not much surprise the stoma was busy!
That's it for my first round of chemotherapy. Overall summation: the first week it made me feel weird with a tendency to tiredness but only excessive on a couple of days. The second week more-or-less "normal", hence this writing ended up being more about the stoma. Chemotherapy can generally affect the bowels but I'm only just getting used to the changes here anyway so it's hard to say what's unusual.
Next cycle starts tomorrow. I'm not documenting all that here or in as much detail.