A humble return

What can I say. There's not much to say that will excuse the 5 months of silence, in fact I'm struggling to account for it myself. All that time, what happened? And that's the giant pity of the thing. All that time is gone now; with no records I will never be able to account for it. I'll try to break it down from hospital dates, but for the most part, this very difficult patch will be forgotten.

That's not necessarily a bad thing because it's actually quite nice when poor memory clouds the nasty things that happen. Not that it's been so bad, but the new chemo has made me anaemic to the point of blood transfusions every time. I haven't been too sick but when I was it was pretty lame.

I'm posting now because today I commenced my "last cycle" as the "health professionals" call it, which means I have 3 chemos left. One today til Friday, one at the end of feb and one at the beginning of march. All in time for my birthday on the 10th if all goes to plan. So that's pretty exciting woudntcha say?? Before it's officially over I have to pass a bunch of scans ocourse. But more on that later.

So being here, on the eve of my last myelosuppressant chemotherapy reaction, has finally given me the kick in the arse to write again. I wanted to, blogosphere, you have no idea how badly. But my computer keyboard has grown a layer of dust to rival the dust on my Swiss ball. That's the kind of dust with monsters in it and you shouldn't mess with it. But also because it was too hard. I was too sad to write, "got up, made toast, watched iron chef, fell asleep for a bit, watched law and order, went to bed" EVERY SINGLE DAY. because apparently that's actually what it's like when you're sick, just really boring. And then we lost the channel with iron chef and it got even worse.

But the point of all this whining is that there is now an end in sight. I'm planning to go back to uni in march. And grow some hair. I'm planning that too. The other thing on the agenda is to throw out everything with a scent in my house. I'm talking new laundry powder, soap, everything because it all smells like chemo.

Anyway imma go back to sleep now (my phone has taken to suggesting "imma" as a word option, that's how much I talk like kanye) and I thank you to anyone who reads after all this time. You are my support, more than you know. This chemo tastes like licking a pole, and NOT in a good way.

Location:Room 9

Mrs Henry Lafayette Dubose

oh, feelings, you are unwelcome. a quick snatching of some medicines, and back to the book, the happy narrative distraction. do not revisit me, delicious spaghetti on toast dinner! you must continue your journey down into the bellypits, forge on bravely though nothing is right. you must be the fibrous saviour of the intestinal tract! lord knows cupasoup isn't up to the challenge. may you be strong and unyielding whatever those gastric juices throw at you, and you will be generously rewarded. good luck wriggly sirs! the path is yours for the staking!

to post, or not to post

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

some more news

spoke to dr lisa orme, consulting oncologist today regarding the pathology of the tumour. the news was as such:

the tumour had an intermediate response to chemo. ideally, the tumour would have been more than 90% dead when it was removed, and the result was around 85-90%, which is ok, not the worst response, but not enough of a response to be sure about sticking with the same chemo medicines. the decision now is whether or not to add complementary medicines, called IE for now, to the treatment regime. the upside of this would be an increased chance of killing all the cancer so nothing metastesises or recurs. the downside would be the other possible side effects, including some kidney toxicity i think, and the treatment would be over 40 weeks instead of 26 weeks (6-9 months).

the oncologists and my surgeon are going to meet, discuss and formulate a recommendation on wednesday, and i suppose i'll go with it.

heading back into pmac for cisplatin/doxorubicin tomorrow.

xox

post-surgical blues

so much has happened!


SURGERY.
it all went swimmingly, so i hear. i had a general anaesthetic and a spinal block, which was gross. my family were all present when i was being wheeled into the optheatre, and i became very distressed so they offered me sedation straight up, because you have to be awake for the needle in the spine before they can give you the general. so they pumped some sedation into my arm, and you're supposed to sit up while they spike your spine but i got too dizzy so they put a pillow on my knees and i curled over. i can remember the needle but not the pain, so i assume there wasn't much, then they told me to lie down and i guess the general must have happened because next thing i knew it was 5hrs later and i was in recovery.

i had a little bit of pain in recovery but they hooked me up with something and i slept for a while. the first night out i spent in the high dependency ward next door to a man who was either snoring, vomiting or hawking snot at a high volume the entire night. fortunately i could go back to the normal ward the next day for the rest of the stay.


HOSPITAL.
the nurses at the mercy private have a higher rate of retardedness, i would not recommend going there. my spinal block wore off after 24hrs and the pain, oh the pain, was bad, and it took 18 nurses and 1 hour to set up the intraveinous morphine, during which time i cried, screamed, writhed and my mother abused health professionals. the iv morphine comes with a button, and you administer your own pain relief as often as you need it, with as little as 5 minute intervals. i didn't find morphine as awesome as i'd hoped, but 3 to 4 pushes in 20 minutes put me to sleep, which was good enough.

i was on morphine for a couple of days. the second day out, my surgeon, the lovely gerard powell, visited me and shouted at all the nurses for not doing their jobs properly. apparently i should have been out of bed already, starting movement. so that's what i did from day 3 onwards. the first walk was excruciating, but i soon realised that a lot of the pain was due to the splint holding my leg straight, as it tied over the wound in a particularly sore place. once i removed the splint i found walking easier, though my knee could take no weight, it just gave way. i also lost all use of my quads, so i couldn't lift my leg at all. to get in and out of bed was impossible without somebody lifting my right leg out for me. this was not fun.

sidenote, the tubes in and out of my body when i woke up included: drain tubes in leg, canula with iv fluids (later morphine) in wrist, catheter, nasal canular. 36 staples in incision!!!!

i will include staple photos soon.

the tubes were removed progressively over my stay and i was released from mercy horrorspital about 5 days after surgery.


SINCE HOSPITAL.
i have enjoyed a cocktail of delicious pain relief medication. my leg has strengthened to the point where i can take some quick steps, and lift it in and out of bed sometimes. the pain is still really bad, and i'm scared that it will be for a long time/ever. i don't know how i can stop taking the meds when i feel like they're hardly working anyway. but i guess i'll speak to the specialists about that. it would be easier if my surgeon was more receptive to questions, but that's how surgeons are apparently.

people have been bringing me lots of tv, which has been awesome. true blood, season 3 30 rock, season 2 flight of the conchords have been my favourite friends. they're making me have weird dreams though so i need to go back to reading. steve bought me twilight and guys, i'm pretty sure it sucks. the majority is wrong again.


LOOKING FORWARD.
tactlessly, my hair has started to grow back in the time since i last had chemo. tomorrow i have my first post-op petermac appointment, where i will hopefully be given information regarding the percentage necrosis (deadness) of the tumour they removed, and therefore how much more chemo i need to have, and what type. they've indicated it will probably be another 6-9 months of chemo but tomorrow they should know for sure. then i suppose i'll be admitted next week!

other than chemo, it's all physio and exercises for a while yet. i'm very unstable moving, and very sore. i can't bend my leg past about 45 degrees, so i can't really sit comfortably in a car or a tute or on a chair. it's so easy to think that you would just keep practising but it hurts so much. i think i'll ask about different pain relief because this stuff isn't really cutting the mustard.

we've almost settled on our puppy choice. it's called a new g dog (possibly sponsored by telstra) which is a 4way cross between a cavalier, a bichon frise, a poodle and a schnauzer. they're supposed to be really strong with good temperaments. anyone have an opinion on this?


sorry for such a long and largely unfunny post. it sounds worse than it is, i'm feeling better and stronger every day. my family and steve are doing amazing jobs looking after me, and i have received so many awesome presents and flowers, thank you everyone!! really keeping my spirits up.

hope to be out and about again soon, i miss having stuff to do!

lots of love,
the bionic woman
xox

surgery

today is wednesday july 22 and i'm heading into the mercy hospital tonight for surgery tomorrow. the surgery will take approximately 4 hours, under general anaesthetic and possibly with a spinal epidural, which means i'll wake up with "no legs", which will be quite scary but better in the long run. they're replacing the bottom third of my femur and my knee with titanium, and i'll have a 20 inch scar down to the middle of my shin. i'm nervous i suppose, but there doesn't seem to be any point in thinking about it in any great depth, as it's going to happen regardless.

i should be home in two weeks, maybe less, depending on my progress. apparently i'll be sent home when i can walk on my crutches, which seems like a good sign because i thought i'd have to be in a wheelchair for a while.

i will text everyone tomorrow when i wake up to say that i'm ok.

see you soon

important things and unimportant things

firstly, the results of the PET scan:

as a result of my oncologist BEING ON HOLIDAY, i couldn't get the most informed person to interpret the results of my scan, and had to accost poor ward nurses/doctors/patients to break down what they said and meant. the results can't really be used on their own anyway, so it's hard to make any conclusions, but here it is.

the PET scan measures cell activity, that is, how much is going on inside the cells. what they can tell me is that the tumour has had a partial response to chemo. as compared to a complete response, where it would be all dead, or no response, where activity levels would be the same or higher than they were before chemo.

without the mri and a biopsy it's hard to know any more than this. but it means that the tumour has in some way been affected, it might be 10% dead or it might be 60% dead, we don't know yet. they'll work that out when they cut it out, and they'll decide whether to push ahead with the same chemo regime or try different drugs. any response is better than no response, so good news.

and now for two less important but more funny things that have happened:

1) anthony this one is for you
after my PET, for which i had to fast, i seriously thought i was going to pass out from hungries and plummeting blood sugar levels, so i convinced father to stop over at subway on the way home. footlong chicken teriyaki, ranch sauce, old english cheese, the works. it was amazing and i ate the whole thing.
flash forward 8 hours and my tummy is not feeling great, me and steve are hanging out in my room trying to watch a movie while my stomach attempts to asphyxiate both of us with the most astounding farttastic sounds and smells. except the thing is, they actually didn't smell like farts. they smelled EXACTLY like subway. not just kind of dense and foody, they smelled like the very same sandwich i ate, and steve agreed, so it's true ok! they actually made me more hungry, which i think is how they get you, conniving old subway. and then i did a poo which looked like a footlong so you guys can come around with the frankincense and myrrh like whenever you get around to it.

2)

by some happy twist of events, i am now sharing my hospital room with grandma yetta. if you don't know what that means you should be pleased, because it means that between now and 1997 you have probably lived a full and interesting life where you did not watch reruns of the nanny. hell, you might not have watched it the first time around. i don't know, you're certainly not me. but for us foxtellers who still enjoy the ever-growing unpcness of the show based around the premise of "how funny it would be for a nice normal englishman to live with a jew?!?!?!", grandma yetta is a big deal. and she really is! obviously it's not the real yetta, but she's got a full length lycra leopard print gown, a smoker's cough and a chest full of mucus to back it up, and if she whacks on the transitions lenses i'm going to go mental. there's not really any story to this but it lifts my spirits.


so as you can tell, i'm fine, chilling in my little hospital bed, EXCRETING so i can go home. should be done late on sunday. reading harry potter, watching SVU, everything is a-ok.