After the adventures of the first round of chemo, we quickly settled into a 2 weekly routine:
First Tuesday bloods are taken at home then sent to the hospital to ensure John's fitness to proceed - white cell counts, major organ health indicators
First Thursday is chemo at hospital from 9am to 4pm
First Saturday removal of the home administered 48 hour pump
Second Tuesday for line flush of the installed PICC line at home to minimise infection and prevent blood clots
Then a week off until back to step 1
Apart from the chemo day, everything came to John at home which was and is really great, and usually in the morning so if we wanted to get out and about we weren't tied down.
Everyone's chemo is different but John's is a combination of 2 chemo drugs administered separately in hospital (one 1 hour bag and one 2 hour bag) interspersed with various saline flushes and other non chemo drips which with a bit of faffing in-between, takes up the whole day. The drive to the hospital at dawn is sometimes very beautiful.....
The third chemo drug comes in a 'pump'. It's actually an inflated bag of a drug in a see-through case which, like a blow up balloon would, wants to deflate through the PICC line into John. It's a bit clunky, as it clips to your belt and you don't want to break it or kink the line and compromise the dosing! With a bit of care, we've managed 4 good pumps so far, keeping an eye on the bag once every 12 or so hours to ensure it's going through ok. The 5th bag is slightly smaller due to weight loss and seems to be pumping slower (more on the weight loss in the next post).
There is a list of instructions for managing your bodily fluids for the first two days after your hospital visit as the chemo drugs are cytotoxic and can be excreted in urine, vomit and blood. You are supposed to flush the toilet twice, wash your hands thoroughly, clean up carefully any leaks and spills and sex must use extra precautions (but that's if you even feel up to it). We even have a cytotoxic spill kit just in case the pump should accidentally get broken.
Liz has probably been more paranoid about side effects than John and there are frequent trips to the loo in the night - not chemo related - things like a high fluid diet just make you pee more often, but John would rather not get 'bunged up' by being dehydrated. A list as long as your arm had been given to John about side effects, but 5 cycles in this is where we are:
Quite a bit of hair loss (hair thinning probably 50% and slower hair growth)
Tingling feelings in fingers particularly when picking up cold items (milk jug) or touching cold metallic items (door handles). Next time you see the cashier in the supermarket wearing gloves, have a think - they may just feel more comfortable wearing gloves whilst touching lots of cold items but equally may be on chemo
Abdominal pain in week 2 - which eases with a hot pad, it seems to have eased now after round three. The optimist in both of us thinks this must be a sign that the chemo is working and attacking the underlying tumours
Slower healing of cuts (mainly from over enthusiastic DIY and log chopping)
Raised heart rate somewhere around 90-100bpm for the first few days
Phlegmy cough, particularly 1/2 way through the night after shallow breathing
Indigestion type symptoms, especially when lying down in bed - resulting in quite a bit of sleeping propped up. We think this is a slow gut resting in upward pressure on stomach rather than indigestion itself.
Other symptoms (differences to John) could be other things - like having had major surgery, the ileostomy and the general attitude of John that within reason, he's going to eat what he wants, when he wants, to build up strength - so we don't think the 'over active stoma' could be blamed on anything other than 'a good diet'.
Before round one John had been given a chest x-ray and we were given the good news that it had shown that tumours had not spread to his lungs at that point in time. Every little helps.
Liz:
We are definitely settling into a comfortable routine of treatment and appointments, and I think we have been very lucky so far that John has coped extremely well with the chemotherapy. I am probably driving him crazy keep asking if he is ok all the time. I am very anxious all the time and I find myself mentally tracking his progress based on any sign or symptom (or possible sign or symptom) and pain levels or general feelings of wellness. My expectation is that at some point the progression will be a gradual or sudden decline and so every cough could signal lung metastases, every twinge could be the tumours growing, every previously unnoticed lump or raised heart rate or extra afternoon nap are a worry. And yet at the same time I'm trying to pretend it isn't real, at least some of the time, otherwise the horrible future will overshadow these precious present days with the pointless wringing of hands, endless crying and useless fretting. I am doing my best to try and make sure we have nice, relaxing days whilst monitoring any signs of a pending emergency and trying to help alleviate any little niggles where we can. Another round to go now, before John has another scan to tell us whether the treatment is working and to what degree, and whether we get to continue with another six rounds. I don't want to wish the days away as we are currently in a kind of Schrodinger's scenario where we can believe it's doing the trick and the future might be longer than we expected.
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