So today I've been in much better comfort than I have been in a while (mostly but il get to that). Yesterday my PCA fentanyl got put up another 10 which turned out just what was needed to stop pressing the button every 6 minutes to once or twice every few hours or so! So for most of today I was much more with it, much more able to process and retain information. I actually found myself quite upset by how poor my memory of the last few weeks are. This week most particularly, since the surgery and the PCA anyway. I was actually looking for something in my phone when I found this blogger app, which I have no memory of downloading, and now also find I used it to write the last blog post! Or for that matter a lot if messages that I have sent.
Unfortunately I'm not as comfortable or lucid as I was earlier - I'm having more of that weird nervy pain in my left chest and arm, and so despite being very tired I'm staying awake to get the pain to a good level so I can get good sleep. Well that's the theory. So when I rediscovered this app I thought "hmm new post!".
Typing is currently easiest on my iPhone. The surgery on Thursday went ahead with a rod in both the left femur and right humerus, so my right arm is in a sling. Initially the sling was on under my hospital gown too which meant I couldnt even use my hand.very frustrating trying to do everything with my left hand. Especially as my tremors are still about pretty much as bad as they've ever been. Just another added frustration.
Lots of frustrations since the second surgery. Though the most frightening wake up I've had post surgery is definitely after the initial biopsy, this was by far the most painful. It had been a very tedious morning/night before. They came in at 10pmish saying they wanted to give me two units of blood. Course they had no luck so...
.... I can't actually remember the course of events well enough. Il have to wait til tomorrow when family visit and I can go over it with mum and get things in order. Scrolling over all this you can really see how dopey I am. Fair bit if typing, not much substance. Opioids aren't as effective on this nerve pain, so I have to take more to get the same cover, so I wind up heaps more drowsy and out of it leavin me once again frustrated, as I can't sleep properly because they pain is just that bit too high, but I'm too wobbly to do anything productive like type.
I Will do another tomorrow that actually tells you something.
Saturday, March 31, 2012
Monday, March 26, 2012
Waiting
Surgery went fine. We got there, and did a lot of waiting. I went in and they got a vein first time(!). Its in the visibly veiny side of the wrist so he used a local cos it's verrrrry painful having needles there.
It was my best waking up experience post surgery so far, though I was very confused for a few moments. When I woke after surgery in the ecovery room I thought I was still pre op and then were still in the process of putting me to sleep. This would have been very funny, except that it changed how I responded to questions about my pain levels. They would ask and I'd giant it was better than it was and that I didn't need anything because I thought I was about to be unconscious anyway!
Anyway I worked it out and the battle for the day begun- get the pain under control. Or really, work out how to communicate what I need to the nurses since my 1-10 pain scale seems quite different to theirs.
What I wound up with is a button I control that gives me fentanyl, which is very strong and doesn't make you horribly horribly itchy or sick like morphine makes me.
I was moved out of recovery around 4 ish, and the rest of the day was pretty much spent negotiating pain medication doses and levels and nurses and looking at tattoos on tumblr.
I had maccas for dinner and sent some drugged up text messages.
I wasn't going to do ny kind of update tonight, except there was a problem. This problem is that for some reason no one wrote up any of my other medication. So I had no long acting relief charted. Which would mean, Iif I were to fall asleep, I wouldn't be pressing my PCA(patient controlled analgesia/fentanyl) every five minutes (the button can only be pressed every five min so you can't OD or anything) and I wouldn't be taking my hydro breakthrough every hour. So I would wake up with no medications in my system after being on very high doses of berry string pain medication for weeks. And I would be in agony. So when I started this we were waiting. The guy actually arriivd about half way through.
He understood the situation and listened and charted it all up and now we're just waiting for them to FIND the pills. They have 8mg but I need 12, so they have to find some 4s as well, which sounds like its proving difficult..
Oh the other somewhat more important news that my completely wiped brains forgot to mention at the beginning is that this will probably not be the only surgery I have this week.
What they're actually hoping to do is put another one in my left leg and also probably something in my right arm too. Sooo.. It's been a very long day.
I'm not in the oncology ward but the one i am in is not far from it. I'm sharing a room with four other people. I don't mind this.
Ahck. It's so late and I've been up since 5 30 and they still haven't brought my pills. Poor mum, she's here too, going to sleep in the lounge near here I think. Once I get my pills. It's difficult, it's been a very busy and stressful for the nurses, there was a death just around the corner from this room.
I hope they find it soon so I can sleep.
I hope this blog makes sense and all that.
It was my best waking up experience post surgery so far, though I was very confused for a few moments. When I woke after surgery in the ecovery room I thought I was still pre op and then were still in the process of putting me to sleep. This would have been very funny, except that it changed how I responded to questions about my pain levels. They would ask and I'd giant it was better than it was and that I didn't need anything because I thought I was about to be unconscious anyway!
Anyway I worked it out and the battle for the day begun- get the pain under control. Or really, work out how to communicate what I need to the nurses since my 1-10 pain scale seems quite different to theirs.
What I wound up with is a button I control that gives me fentanyl, which is very strong and doesn't make you horribly horribly itchy or sick like morphine makes me.
I was moved out of recovery around 4 ish, and the rest of the day was pretty much spent negotiating pain medication doses and levels and nurses and looking at tattoos on tumblr.
I had maccas for dinner and sent some drugged up text messages.
I wasn't going to do ny kind of update tonight, except there was a problem. This problem is that for some reason no one wrote up any of my other medication. So I had no long acting relief charted. Which would mean, Iif I were to fall asleep, I wouldn't be pressing my PCA(patient controlled analgesia/fentanyl) every five minutes (the button can only be pressed every five min so you can't OD or anything) and I wouldn't be taking my hydro breakthrough every hour. So I would wake up with no medications in my system after being on very high doses of berry string pain medication for weeks. And I would be in agony. So when I started this we were waiting. The guy actually arriivd about half way through.
He understood the situation and listened and charted it all up and now we're just waiting for them to FIND the pills. They have 8mg but I need 12, so they have to find some 4s as well, which sounds like its proving difficult..
Oh the other somewhat more important news that my completely wiped brains forgot to mention at the beginning is that this will probably not be the only surgery I have this week.
What they're actually hoping to do is put another one in my left leg and also probably something in my right arm too. Sooo.. It's been a very long day.
I'm not in the oncology ward but the one i am in is not far from it. I'm sharing a room with four other people. I don't mind this.
Ahck. It's so late and I've been up since 5 30 and they still haven't brought my pills. Poor mum, she's here too, going to sleep in the lounge near here I think. Once I get my pills. It's difficult, it's been a very busy and stressful for the nurses, there was a death just around the corner from this room.
I hope they find it soon so I can sleep.
I hope this blog makes sense and all that.
Saturday, March 24, 2012
Friday, March 23, 2012
Lots of hours in waiting rooms
Very long day. Short version I have energy to tell is:
got to hospital,
had xrays,
waited,
had CT scans,
had blood taken,
waited,
went home.
Except that takes us from 11am - 4pm ish. Though I slept more solidly last night than I have in a while, its still just 5 hours sleep on many days of 3 - 5 hours sleep and I am just so very tired.
Surgery will be monday - they would have done it today but because I have small young bones they dont have a nail the right size, so they have to fly it down from sydney. Though it being a few days later means itl be a few days less healing between surgery and chemo (I dont think they will be doing radio on the sites just after surgery) its hard not to be glad it isn't today, I think it would just be too much too fast today.
I wont be having any visiters/seeing anyone before the surgery, but will definitely be letting people know post surgery about visiting. They said I should expect to be in a few days. I'm hoping I'l be out after just one night, I'm already going to be admitted the following week for chemo I'd like at least a little time at home with my visiting family.
got to hospital,
had xrays,
waited,
had CT scans,
had blood taken,
waited,
went home.
Except that takes us from 11am - 4pm ish. Though I slept more solidly last night than I have in a while, its still just 5 hours sleep on many days of 3 - 5 hours sleep and I am just so very tired.
Surgery will be monday - they would have done it today but because I have small young bones they dont have a nail the right size, so they have to fly it down from sydney. Though it being a few days later means itl be a few days less healing between surgery and chemo (I dont think they will be doing radio on the sites just after surgery) its hard not to be glad it isn't today, I think it would just be too much too fast today.
I wont be having any visiters/seeing anyone before the surgery, but will definitely be letting people know post surgery about visiting. They said I should expect to be in a few days. I'm hoping I'l be out after just one night, I'm already going to be admitted the following week for chemo I'd like at least a little time at home with my visiting family.
Quite a lot of information, but not a lot of energy.
So there is a fair bit to say I think, but I'm so tired so it may not be very clear but here goes.
Had the PET scan on monday. Saw oncologist thursday. Tumours in brain are showing no activity so they're dead or sleeping or just not doing stuff so thats a big positive. It'l take some time for the cells to all be moved away which they will hopefully all do but its so great they aren't active.
Scapula still showing some activity I think, and there is also activity in two littler spots in my left chest (plura and mediastinum I think). There is something in my right humerus but I dont think there is anything in the left one. More activity in the neck of the left femur, and two others in my right leg. Its these last two that are the most immediate concern.
Because of the pain I'm in the first plan is to go to radiotherapy for those painful bone spots (right leg: mid femur and pelvis). So with the doc on thursday the plan became: see rad-onc today and get radio sorted to be done over the coming week, but then chemo would need to start monday week to get working on all these spots. The chemo regime would be the IE - the one I had two rounds of near the beginning of treatment. Takes five days, made me rather ill. Because it made me so sick last time it looks like I'l be admitted for each round of this chemo, which will go for between 3 and 6 rounds, once again on a 21 day cycle I think. So a week in hospital, 2 weeks out. After this, if it is proving effective it is likely they will want to do High Dose Chemotherapy. Frightening yes, but I've recently heard a success storie in a case much older than I and so feel much better about doing it.
So today we went in for the planning for radiotherapy which involves a CT of the area and some more little dot tattoos and measuring bits. This all went along fine, except for spending a good 4 hours waiting between/before appointments. Then we got a call tonight from the rad-onc who had looked at the CT scan and was concerned that the bone (not sure if its the pelvis or femur) was in worse shape than we thought. Its good that this level of pain is finally explained, but its a problem because she thinks that, if she isn't just being overly cautious, radio wont be effective enough quick enough and I could suffer a fracture/bad damage to the bone.
So we're to call a number after 9am tomorrow and they will tell us a time, and we'll go back in for a more detailed CT scan of the area with an overnight bag. Then a bunch of people will look at the scan carefully and then they will decide if I need surgery then and there. We aren't really certain what that would entail at this point. We guess there would be a pin involved to strengthen the bone, and I guess removing the diseased bits?
Its entirely possible of course that it wont be so bad as she thinks and it will be radio on monday (hopefully, they're pretty flat out and lots of the machines seem to have been having problems) and then the chemo the following monday.
I'm just deeply exhausted by the news of the last few days. Spending most of my waking time thinking about cooking and tattoos. Or actually cooking and doodling/drafting tattoos. Had the opportunity to see a couple of people recently, and if the bone isn't so bad and its just radio I'l have time/energy/pain coverage to see more people like I keep promising.
If I do have the surgery I dont expect I'l be in hospital long at all its pretty minor I think and I already have a wheelchair, crutches, ramps, special pillows and enormous quantities of opioids so I'l be better off at home.
On a more positive note, my uncle just arrived, and I made an amazing cake last night, and tomorrow my aunt is arriving, and then more relatives are visiting at various times over the next few weeks so there are nice things.
I ought get to bed now, I think I've covered everything important, I'l be sure to let you all know what is happening when we know what is happening.
Had the PET scan on monday. Saw oncologist thursday. Tumours in brain are showing no activity so they're dead or sleeping or just not doing stuff so thats a big positive. It'l take some time for the cells to all be moved away which they will hopefully all do but its so great they aren't active.
Scapula still showing some activity I think, and there is also activity in two littler spots in my left chest (plura and mediastinum I think). There is something in my right humerus but I dont think there is anything in the left one. More activity in the neck of the left femur, and two others in my right leg. Its these last two that are the most immediate concern.
Because of the pain I'm in the first plan is to go to radiotherapy for those painful bone spots (right leg: mid femur and pelvis). So with the doc on thursday the plan became: see rad-onc today and get radio sorted to be done over the coming week, but then chemo would need to start monday week to get working on all these spots. The chemo regime would be the IE - the one I had two rounds of near the beginning of treatment. Takes five days, made me rather ill. Because it made me so sick last time it looks like I'l be admitted for each round of this chemo, which will go for between 3 and 6 rounds, once again on a 21 day cycle I think. So a week in hospital, 2 weeks out. After this, if it is proving effective it is likely they will want to do High Dose Chemotherapy. Frightening yes, but I've recently heard a success storie in a case much older than I and so feel much better about doing it.
So today we went in for the planning for radiotherapy which involves a CT of the area and some more little dot tattoos and measuring bits. This all went along fine, except for spending a good 4 hours waiting between/before appointments. Then we got a call tonight from the rad-onc who had looked at the CT scan and was concerned that the bone (not sure if its the pelvis or femur) was in worse shape than we thought. Its good that this level of pain is finally explained, but its a problem because she thinks that, if she isn't just being overly cautious, radio wont be effective enough quick enough and I could suffer a fracture/bad damage to the bone.
So we're to call a number after 9am tomorrow and they will tell us a time, and we'll go back in for a more detailed CT scan of the area with an overnight bag. Then a bunch of people will look at the scan carefully and then they will decide if I need surgery then and there. We aren't really certain what that would entail at this point. We guess there would be a pin involved to strengthen the bone, and I guess removing the diseased bits?
Its entirely possible of course that it wont be so bad as she thinks and it will be radio on monday (hopefully, they're pretty flat out and lots of the machines seem to have been having problems) and then the chemo the following monday.
I'm just deeply exhausted by the news of the last few days. Spending most of my waking time thinking about cooking and tattoos. Or actually cooking and doodling/drafting tattoos. Had the opportunity to see a couple of people recently, and if the bone isn't so bad and its just radio I'l have time/energy/pain coverage to see more people like I keep promising.
If I do have the surgery I dont expect I'l be in hospital long at all its pretty minor I think and I already have a wheelchair, crutches, ramps, special pillows and enormous quantities of opioids so I'l be better off at home.
On a more positive note, my uncle just arrived, and I made an amazing cake last night, and tomorrow my aunt is arriving, and then more relatives are visiting at various times over the next few weeks so there are nice things.
I ought get to bed now, I think I've covered everything important, I'l be sure to let you all know what is happening when we know what is happening.
Monday, March 19, 2012
Friday, March 16, 2012
The plan
Ok, so I think this post will be half dictated half sort of typed, which could be a whole lot faster or significantly slower than either or. my left side is working well enough I keep going to do things with it assuming it'll work, and then spilling coffee or putting my hand in my food or hitting the completely wrong but on the keyboard. So it really is much better and just a bit clumsier than I used to be.
I apologise, it has been somewhat longer then I planned to leave it between blog posts. The fatigue just turned out to be considerably greater than I had expected, plus I'm on rather high doses of various analgesics. Not my favourite. The good news is I have finished radiotherapy on my brain! Yay! :-) I'm also looking a bit more like myself which is very important to me, having the energy to dress as I'd like; unfortunately the dexamethasone has the unfortunate side-effect of making my face puffed up and adding a chin-sigh. I do miss my cheekbones. Though of course now I have finished the radio on the brain it means I can begin to cut down my dose of the dexamethasone which is the steroid that works to alleviate pressure in my brain. Cutting down the dexamethasone has to be done very gradually which is frustrating. But necessary. Hopefully there won't be problems with cutting it down though it is possible/probable that I may start experiencing some headaches or other symptoms and have to slow down the process even more. Ha ha I just want my face back.
I was getting to a very high level of freedom and independence of movement until a few days ago when I started experiencing more intense pain in my legs. It's all very strange, I've had this pain since I was in hospital and was not really sure what's causing it then either, in the last 24 hours or so though it has become quite bad and movements difficult once again. Conveniently though we were in the hospital yesterday anyway to see my oncologist and so also got to catch up with my palliative care guy who adjusted my doses of various things leaving me significantly better this morning there was yesterday morning.
It was pretty bad timing actually to have been in so much pain yesterday; it meant we all had very little rest and I was very full of breakthrough pain medication making everything much harder to process. Frustrating, when you're trying to take on what your oncologist is telling you about your future. Not that there was much in the way of specific dates or details really available.
On Monday morning I will be having a PET scan (blah) which will be tedious and early but hopefully at least the machines will be working and I won't have to be in there too long. After the PET scan the next appointment we have is Thursday with my oncologists again who will by then have double checked with some other specialists about exactly what to do next. The plan is more chemotherapy starting most probably next week, though it's unclear if that will be on Friday after the appointment or before then. It will be one of the drugs that I was on beforeI'm quite certain as well as a new one.
Though nothing is set in stone I think it sounds like it will be like 3 rounds of this regime, probably at similar intervals (3 weeks) to what I was on before. After these 3 rounds we will have another PET scan, see how everything has responded to those drugs and then and make a decision about high dose chemotherapy, which is now on the table. I know I have discussed high-dose on the blog before but are just quickly recap. Basically it's a really high dose of chemotherapy delivered over like a week followed by a month or thereabouts in the acute care ward/bubble while they give me back my stem cells so my immune system can recover.
it is possible high-dose chemotherapy won't go ahead it all depends on how I respond to these new chemo drugs and how crook I am. Radiotherapy other places is also very likely considering the pain I'm in, plus it's not such a bad thing to do radio at the same time as chemo if it's places like legs which it would be for me.
But yeah so at the moment just hoping my movement will improve for the coming week, so I'll be able to see people and get out a little bit. It would be great to be able to have more visitors and even go out with friends, both are still quite difficult. Just wanted to thank people for their enormous generosity again and apologise for often not being able to come to the door myself and stuff.
I have now officially pulled out of my world youth international trip, which is sad but yeah it really wasn't going to happen at this point I think it's safe to say. I do feel the need to try and promote them; it's such a great program I am sad that I had to pull out. Maybe one day, hey?
Fatigue from radio can last quite a while, so not sure how long it'll be before I have much energy. Plus of course there's also the drugs and chemo starting soon, so I don't think there is going to be much improvement in the regularity of my blog posts unfortunately. Though I'm really trying to get organised with responding to messages at long last.
Well I'm struggling to keep my eyes open, time for a mid-morning nap ha ha! oh and I will try to remember to post a photo or 2 of my radio mask. It's too weird not to share with you all :-)
I apologise, it has been somewhat longer then I planned to leave it between blog posts. The fatigue just turned out to be considerably greater than I had expected, plus I'm on rather high doses of various analgesics. Not my favourite. The good news is I have finished radiotherapy on my brain! Yay! :-) I'm also looking a bit more like myself which is very important to me, having the energy to dress as I'd like; unfortunately the dexamethasone has the unfortunate side-effect of making my face puffed up and adding a chin-sigh. I do miss my cheekbones. Though of course now I have finished the radio on the brain it means I can begin to cut down my dose of the dexamethasone which is the steroid that works to alleviate pressure in my brain. Cutting down the dexamethasone has to be done very gradually which is frustrating. But necessary. Hopefully there won't be problems with cutting it down though it is possible/probable that I may start experiencing some headaches or other symptoms and have to slow down the process even more. Ha ha I just want my face back.
I was getting to a very high level of freedom and independence of movement until a few days ago when I started experiencing more intense pain in my legs. It's all very strange, I've had this pain since I was in hospital and was not really sure what's causing it then either, in the last 24 hours or so though it has become quite bad and movements difficult once again. Conveniently though we were in the hospital yesterday anyway to see my oncologist and so also got to catch up with my palliative care guy who adjusted my doses of various things leaving me significantly better this morning there was yesterday morning.
It was pretty bad timing actually to have been in so much pain yesterday; it meant we all had very little rest and I was very full of breakthrough pain medication making everything much harder to process. Frustrating, when you're trying to take on what your oncologist is telling you about your future. Not that there was much in the way of specific dates or details really available.
On Monday morning I will be having a PET scan (blah) which will be tedious and early but hopefully at least the machines will be working and I won't have to be in there too long. After the PET scan the next appointment we have is Thursday with my oncologists again who will by then have double checked with some other specialists about exactly what to do next. The plan is more chemotherapy starting most probably next week, though it's unclear if that will be on Friday after the appointment or before then. It will be one of the drugs that I was on beforeI'm quite certain as well as a new one.
Though nothing is set in stone I think it sounds like it will be like 3 rounds of this regime, probably at similar intervals (3 weeks) to what I was on before. After these 3 rounds we will have another PET scan, see how everything has responded to those drugs and then and make a decision about high dose chemotherapy, which is now on the table. I know I have discussed high-dose on the blog before but are just quickly recap. Basically it's a really high dose of chemotherapy delivered over like a week followed by a month or thereabouts in the acute care ward/bubble while they give me back my stem cells so my immune system can recover.
it is possible high-dose chemotherapy won't go ahead it all depends on how I respond to these new chemo drugs and how crook I am. Radiotherapy other places is also very likely considering the pain I'm in, plus it's not such a bad thing to do radio at the same time as chemo if it's places like legs which it would be for me.
But yeah so at the moment just hoping my movement will improve for the coming week, so I'll be able to see people and get out a little bit. It would be great to be able to have more visitors and even go out with friends, both are still quite difficult. Just wanted to thank people for their enormous generosity again and apologise for often not being able to come to the door myself and stuff.
I have now officially pulled out of my world youth international trip, which is sad but yeah it really wasn't going to happen at this point I think it's safe to say. I do feel the need to try and promote them; it's such a great program I am sad that I had to pull out. Maybe one day, hey?
Fatigue from radio can last quite a while, so not sure how long it'll be before I have much energy. Plus of course there's also the drugs and chemo starting soon, so I don't think there is going to be much improvement in the regularity of my blog posts unfortunately. Though I'm really trying to get organised with responding to messages at long last.
Well I'm struggling to keep my eyes open, time for a mid-morning nap ha ha! oh and I will try to remember to post a photo or 2 of my radio mask. It's too weird not to share with you all :-)
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