i haven't posted in ages because i've been pretty sad. the chemo seems to be stretching boundlessly ahead (around february); the chance of metastases is high (around 40%); and i've been sick.
it's not all bad. i've made a pretty good recovery from surgery in that i'm walking and bending reasonably, trying to decrease pain meds etc. steve puts vitamin e on my scar as often as we remember but it's still pretty mean.
since the last post i had cisp/dox again, got really sick, got an infection, got readmitted to hospital, had antibiotics, got out, went back for methotrexate, got out, and now i'm going back for ifos/etop. i'm grumpy because it has unfortunately ended up like almost three straight weeks of hospital, which has been really tough. i've had lots of yuckie roommates too; the exploding poo guy, the poo in the bed guy, the guy who demands things of my guests. hopefully this week will be less eventful/gross.
i've never had ifos/etop before, it's the new chemo they've added since the surgery. it's five consecutive days of chemo followed by 2 weeks off. the side effects aren't necessarily too bad, hopefully it will be better tolerated than cisp/dox. i'm pretty nervous.
there were a couple of fuckups last week. the first was when a newish nurse took my bloods without first turning off the second infusion, which meant that the blood was diluted. when the results came back, the doctors panicked and ordered not one but three transfusions, each of which comes with the risk of hepatitis or hiv. it was only because one of my regular nurses was switched to nights, and was surprised by this very unusual effect, that it was investigated further. they took my bloods again properly and they were fine. so i nearly had three bags of blood i didn't need.
the second fuck up was with people who don't know how to access ports, and i won't go into it because it's gross and long winded, but i ended up being "reneedled" which is way grosser than you think, two times more than necessary. not happy.
so i'm nervous to be going back this week. it just seems like the more time you spend in hospital, the more chance something is going to go seriously wrong and you get aids. epic fail. but in better news, next saturday my puppy is arriving.
this isn't much of a post but at least now everyone knows what's happening. when i get some pizazz back i promise i'll be all in your face with jokes and photos of puppy and new shit.
lots of love jes
ps metamucil rules
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My brave, strong, clever Jess, sometimes it is hard to see an end to all this, but keep hold of what we know:
ReplyDelete- the tumour was small and caught early
- surgery was able to remove all the tumour with wide margins around it
- there wasn't (and still isn't) any metastasis
- the first rounds of chemo killed nearly 90% of the tumour
- the new drugs are going to get the rest of it!!
Because of these factors, we should be hopeful that metastasis is less than 40%
Keep strong - we are all here to support you in whatever way we can - together we will beat this!
Love always, M
everything will be ok, jes. lets get pizza next week!
ReplyDelete(you said pizazz so now i want pizza)
i'll see you soon,
anth s