amitriptyline

Some nasty back pain a few days ago lead to a significant increase in my amitriptyline dose.  This has left me very dozy for several days to the point where I fall asleep mid sentence and wake myself up talking in my sleep it seems.

Only just starting to feel particularly chemoee this afternoon. My haemoglobin and platelets were both down a bit; not so much as last round but enough to justify the 25% reduction in dose of chemo. Something I have mixed feelings about.

I know I made grand promises about some great long post putting the last number of weeks in order. Unfortunately after a confusing nap this afternoon which began with sunshine, mum and probably drug induced fatigue and ended with chemo brain, dad and twilight I dont feel like I have a very strong grasp on reality.

I'm sad I felt so tired pre chemo fog, I had just finally begun the next book o Game of Thrones, and now I'm not likely to continue again until next week.

There was a days delay with starting chemo, and then about 6 hours hanging round hospital the next day waiting for a room. Someone forgot I'm still on contact precautions so they'd found me a shared room. The room I have got though is huge and has a fold out couch and everything. Shame its for chemotherapy.

Though back pain has subsided, the shoulder pain is still there and there is now another pain in my shoulder bone which I'm hoping will be explained by an xray I had today (though taken for my right lung it should with any luck have got all the chest and any issues up there.

I have a great deal of independence of movement though which is nice, despite being hooked up to this or that at all hours it makes a big difference to be able to get up by yourself.

Well, the food the hospital delivered tasted like detergent so I'm off to see what dad wants. Hope every everyone is well enough.

P.S FCS I've only just worked out how to decline/accept requests - if you're still on t.witter much you should feel free to add me again but I may need help recognising you as you
P.P.S I'm afraid my twitter isn't available to relatives or many people I know IRL.
P.P.P.S. Nanna I have your rock with me much of the time <3
P.P.P.P.S. Dear friends I still have no credit, just a couple of free sms's from an online service for emergencies and things x

Coming to a blog near you!

Working on a decent blog post where I put the last few weeks in order a bit, since I got home last week I think I've just been reluctant to think about my time in hospital much.

I'm realising the coping mechanism I'm tending to employ most right now is just not thinking about it. Which gets harder as days go on; I get tired and bored. I dont really get to go out much. There are only really two places in the house where I can exist comfortably, our lazyboy armchair and my bed, which really does get a bit boring.

Anyway, just thought I should let you know I'm doing alright, and I should have a bigger and better post before I'm admitted for chemo on monday. Or maybe on monday.

P.S to FCS I dont think you did find me on twitter, I have a private account which means to view my tweets you have to be approved?

P.S.S Sandra, LOL means 'laughing out loud' usually actually! Most of the time at least. But lots of love to you too. :)

P.S.S.S Thank you everyone so much for the lovely messages and fantastic gifts and messages, I appreciate it enormously <3

Two units of blood later

I had an ultrasound of my left thigh today and though haven't heard back yet, I should be going home tomorrow. Apparently they've already done my discharge notes and the lady from the pharmacy has already been through alllllllllll my pills and things with me so I'm assuming the docs have had a look and are happy with what they saw (no worrying collection of fluid/infection/no need to operate or stick me with any big needles).

Oozing stopped soon after the staples were out yesterday it seems. Everything feels much better. I'm not really using the crutches in my room to move around and get up, and have for most of today and yesterday not been attached to an IV so after waiting in a corridor for 2 hours around my ultrasound I got dressed in real clothes and was wheeled down to the cafe to have lunch with my parents and some family who are down from Queensland! I was afraid I'd miss their visit entirely it was lovely. Especially since I didn't have to eat hospital cafe food and mum instead brought stuff from dobinson's (an excellent pastry shop).

The combination of having the staples out, greater freedom of movement, family, good food, being out of my really rather quite dark room and the hopes of escaping soon made for a pretty great improvement in my mood. Felt pretty normal at lunch, which is a nice change. With all these drugs in my system the strangest or simplest or silliest things send me into floods of tears or make me extremely irritable. All the time. Which frustrates me and makes me cry more. In fact just typing this brought me to the brink of tears.  Tedious! At least I have some eyelashes now to help with that.

The super soft almost-could-be-a-haircut-hair I had before radio is now gone - though I still have eyebrows etc. Though if they're going to come out I wish they'd do it now so I dont have the bother of fixing them up. I cant wait to start looking like myself properly again. That'l do wonders for my mood too I think. My face is very puffy still - not as bad as it was but still. Eyebrows all funny and all pale. The hospital gown and too-big-for-me dressing gown dont help really either. At least I'm not walking with an old person frame or like a baby t-rex like I was before the surgeries. Now, if I walk with one crutch, I feel more like Dr. House than anything, which I'm much more comfortable with.

So I just finished watching the BBC Sherlock Holmes with dad. Yeah I know we're a bit late to the party, but gee, that was pretty good actually if anyone else out there hasn't gotten to it yet. Thank goodness for laptops. I think I'd go absolutely mad in here if it were the 90's or something, since so much of the time I'm too tired to read in here. I seem to always be on heavy duty pain killers and/or anaemic when I'm in here. Not to mention chemo.

I'm sure there are actualy more imporant medical details to share with you than sherlock but I'm going to go to bed now and I'l remember whatever I've forgotten tomorrow. At home :)

Still here

Still in hospital and if the osteo's have their way i will be till thursday. Im not certain i can do that if im honest, its already my longest stint in hospital and im pretty stir crazy. i went outside for the first time in over 2 weeks today. i dont know really if it helped my mood or upset me.

My right leg is strong enough now that i can stand without (human) assistance! Though i still need a wheely-arm-support-walker thing to move at all. Saturday was the best day pain wise i think, since then my thighs have gotten sorer and sorer really, but its the healthy to be expected type of pain, the type one would usually get after three surgeries and a week of chemo in the space of two weeks. So thats good. "To be expected" aches are infinitely preferable to shooting searing nerve back/leg pain or mysterious hopefully just nerves reconnecting burning sensation back/chest/arm pain.

The main hold ups with getting me out  of here are A, the top wound on my left hip is still oozing. Its funny now i type that that must sound super gross to everyone out there, but too bad im too tired and too drugged to omit moderately squirmy details. Anyway, the 2nd 2 surgeries (right humerus, left femur) were done with staples as opposed to dissolvable stitches (christ knows why). So yeah they're looking pretty frankenstein (dad and  took a pic of one but il spare you that for now hah) and the top staple on the top left (legs each had 3 incision points; hip, thigh and knee) is still omitting some fluid. So they're putting off taking all the staples out, though the others could probably all come out now (they say between days 10 & 14 for stiches/staples, monday was day 11). Then they could stick on a vac dressing (special dressing of some kind) then I could go home! ...If  not for

B, Actually getting me anywhere poses a challenge. Getting into our car sounds about as easy as breaking into the whitehouse actually. Id need be in the passenger seat but without using my right arm or...either legs too much. And just generally there is concern over how id manage the house. Id still require a lot of assistance. Which is such a nightmare. Its not so bad now i dont need 2 people present just to stand but its endlessly frustrating how the most basic things require so much effort and attention and planning (gotta judge pain levels and required dose of hydro and how long and blah).

I've actually been having problems with blurred vision in my left eye again which  is concerning. But they  dont feel its worth upping the dex dose without any other symptoms. Since it isn't that bad and dexmethasone really is that bad, everyone is keen to continue slowly dropping the dose little by little. The dex makes everything that much more stressful among other things, so I;m happy to trust thm and go with it.

My phone is currently without internet or credit and because Virgin mobile is pathetic it may be a few days before i can manage communication more direct than this blog.

Doing much better on the pain front! Back pain barley there - its all a bit confusing. Several different theories about why that was happening. Now that has passed/is sufficiently covered I'm feeling the surgery site pains a lot more. Though of course its not nearly as bad as the back pain - really I had a very good day.

Not much to report except frustrations involving dex doses and the fact I've slept for the majority of yesterday and today. Just so full of chemo. Chemo brained, but not sick, which is incredible.

Tomorrow is the last day of treatment and I have the option to go home that night and come back he next day for staples to come out (i think), though the practical choice may be to stay another night. Give the oozing a chance to heal, another 24 hours for my arm to heal enough so I dont need assistance standing, and I dont have to take mesna  pills which are huge and disgusting.

I'm falling asleep as I type, will do more tomorroprobably

Chemo finally started.  Pain getting worse in all the places there are no reason for there to be pain. Spent lengths of time this morning in 9/10 pain this morning when PCA wasn't available for various stupid reasons.

Not sure exactly what I've been doing most of today. Been a blur of frustratingly inefficient pain medication, of exhaustion from spending the night watching for the PCA rather than sleeping, of being confused by all the different teams of people having different information and opinions. Thank goodness for my parents. Mum's been acting as a nurse most of today and both have been invaluable (as always, but today in particular) with expressing my concerns and opinons, and understanding and remembering what people say and sending people away when I'm too tired.

Platelets and haemoglobin are both low so I'm having a couple of units of blood, one with/before chemo and the other will start early in the morn before tomorrows chemo.

I've been switched to a different pain management team and they switched my drugs so hopefukky  these will  be good.

But yeah chemo waaas delayed to today so I wont finsh till sat. ''

Please leave family names out of comments, internet safety everyone! :)          

Katie asked me (her father) to write a blog post for her as she's tired and finding the typing too difficult.

She's already explained about the surgical installation of metal pins in both femurs and her right humerus, but I'll give a bit more detail. With those bones being weakened by the disease they were at risk of fracture, so the pins were put in to prevent this from happening, as well as to reduce the pain (which had her almost unable to walk). As she had chemo planned i was important to stabilise her bones to prevent  fracture while on chemo as they wouldn't be able to operate or heal properly, so she'd just have to put up with the fracture. Obviously this would be very bad, so it's best to put in the pins to prevent fractures.

She's already been up on her feet a few times and is finding that the old pain she had is much reduced--instead, she's got the pain from the surgery but we hope that reduces quickly. It's been very difficult though, she's said a bit about the pain management (or lack thereof). The pca (patient-controlled analgesia) turned out to be a kind of sleep-deprivation torture--the initial dose meant she needed to press the button every time it was available (~5 min intervals) to get barely enough to keep the pain at a bearable level, which meant she was desperately afraid of falling asleep and waking up in agony. The ward appeared reluctant or unsure to call a doctor but when one came (after some very gentle prompting by Kate's parents) they adjusted it straight away. This helped a lot and let Katie get some sleep at last. I guess it's understandable that they didn't get her pain levels right, after the first surgery: but the same thing happened after her second surgery, which I think is inexcusable. Other unsatisfactory things have happened, but I won't go into details except to say that medical staff should be given training in communication skills and aseptic technique.

Tomorrow (Monday) Katie starts the next lot of chemotherapy. She's hoping that her legs will be well enough for her to stand up and walk around a bit over the next couple of days, before the chemo reaches the point of making her feel sick. At the end of the week we'll be taking her home at last where she'll finally get some decent sleep and food! The family brought in some chocolate ice-cream for a round the bed session tonight in anticipation of a week without such delights.

time to go