The last week is an incredible blur in my head. Got home last night, but have spent most of the last few days sleeping. Feeling much better now after some family time and not being in hospital. Been a very intense week. Very strange. Very... Very. I feel exhausted, like I've been beaten up physically emotionally and psychologically, leaving me all bruised and tense. However after a good meal and listening to dad play guitar and flicking through photos with mum and mad I'm regaining my hold on reality.
It really is the little things in life that make all the difference.
Anyway, I am home and slowly recovering from my week of intense pain, narcotics and chemotherapy. Looking forward to getting back into the world and being with people I love outside of a hospital.
Hoping everyone out there is well and good x
Friday, September 30, 2011
Saturday, September 24, 2011
Tomorrow
will either hold chemotherapy, or radiotherapy. My oncologist isn't here over the weekend, so we wont know until tomorrow morning what his verdict is. I wish we hadn't waited such a long time in between treatments. I wish we had just gone back in 2 weeks later, I would have been ok. The fracture probably still would have happened, but it would have healed faster as the tumour would have been attacked earlier.
Purple Haze
So this last week has been a haze of drugs and pain and frustration. It felt like much longer than a week. But by our friday appointment with my oncologist (we missed the thursday one) I was feeling a lot better. However by the time I went to bed that night I'd had to take an extra endone (10mg) on top of two panadol, two neurofen and the 20mg of oxycontin. And I was still quite uncomfortable. On the up side though mum had been out with some friends and had what sounded like a lovely, much needed evening.
I woke up at 3am that morning, and then again at 6. The first time I managed to drug myself back to sleep and relative comfort, but at 6 I could not make the pain go away and it just seemed to get worse. We had been told that if it were to get much worse, we should get ourselves to hospital pretty much straight away so as to rule out spinal cord involvement. By 7 mum was down and chatting with the community nurses. By 7 20 an ambulance had been called. At about 8 30 the paramedics were there working out the best way to get me down our front steps into the back of the ambulance. They produced this amazing little whistle thing- when they gave me the name of the drug I was determined to remember it, but I fear it was so effective it effected my short term memory. You inhaled the drug and it was pretty near instantly effective, and wore off very quickly too. Anyway, they somehow got me into the ambulance and whisked me away to TCH.
It was a pretty awful day. I was in a lot of pain which was not responding well to endone and oxycontin, there was fear of lasting or permanent nerve damaged, the MRI machine took FOREVER to get working AND, to top it all off... I was meant to be at TEDx that day. A day I had been looking forward to for a year - the most inspiring and energising day of the year - and i was to spend it in hospital in pain.
After the lengthy MRI and too many useless xrays they ruled out any new damage. The only things were this pain, and something strange in my spine revealed by the MRI. All the MRI can actually show is a.. weakening of the spine? Thinning of the spine... something like that. So it doesn't mean the cancer has spread, but we wont know until I get a PET scan. Anyway. Choosing not to dwell on that. Nothing I can do about it, and we dont know enough so, yeah. This left the pain to deal with. They gave me fentanyl and hydromorphone. Hydromorphone is meant to be something like 5-7 times as strong as morphine, but it wont make me itchy and is a much more pleasant experience. They have continued to give it to me today, but in an oral form which has not been as effective.
They moved me to the oncology inpatient ward's acute care section, which is usually for neutropenic's and others with weak immune systems- but I'm glad I'm here. I need a lot of help with just about everything as the pain is very persistent and debilitating. Much as I hate hospitals, it actually feels nice to be out of home, since its been a very unpleasant week there. A change of scenery, and a break from taking constant care of me for mum.
Though I wrote this with a little more care than usual I'm still under the influence so not sure this will all be terribly clear. Hope you can all understand it!
I woke up at 3am that morning, and then again at 6. The first time I managed to drug myself back to sleep and relative comfort, but at 6 I could not make the pain go away and it just seemed to get worse. We had been told that if it were to get much worse, we should get ourselves to hospital pretty much straight away so as to rule out spinal cord involvement. By 7 mum was down and chatting with the community nurses. By 7 20 an ambulance had been called. At about 8 30 the paramedics were there working out the best way to get me down our front steps into the back of the ambulance. They produced this amazing little whistle thing- when they gave me the name of the drug I was determined to remember it, but I fear it was so effective it effected my short term memory. You inhaled the drug and it was pretty near instantly effective, and wore off very quickly too. Anyway, they somehow got me into the ambulance and whisked me away to TCH.
It was a pretty awful day. I was in a lot of pain which was not responding well to endone and oxycontin, there was fear of lasting or permanent nerve damaged, the MRI machine took FOREVER to get working AND, to top it all off... I was meant to be at TEDx that day. A day I had been looking forward to for a year - the most inspiring and energising day of the year - and i was to spend it in hospital in pain.
After the lengthy MRI and too many useless xrays they ruled out any new damage. The only things were this pain, and something strange in my spine revealed by the MRI. All the MRI can actually show is a.. weakening of the spine? Thinning of the spine... something like that. So it doesn't mean the cancer has spread, but we wont know until I get a PET scan. Anyway. Choosing not to dwell on that. Nothing I can do about it, and we dont know enough so, yeah. This left the pain to deal with. They gave me fentanyl and hydromorphone. Hydromorphone is meant to be something like 5-7 times as strong as morphine, but it wont make me itchy and is a much more pleasant experience. They have continued to give it to me today, but in an oral form which has not been as effective.
They moved me to the oncology inpatient ward's acute care section, which is usually for neutropenic's and others with weak immune systems- but I'm glad I'm here. I need a lot of help with just about everything as the pain is very persistent and debilitating. Much as I hate hospitals, it actually feels nice to be out of home, since its been a very unpleasant week there. A change of scenery, and a break from taking constant care of me for mum.
Though I wrote this with a little more care than usual I'm still under the influence so not sure this will all be terribly clear. Hope you can all understand it!
Thursday, September 15, 2011
Pathological Fracture
Yesterday I decided t make bruschetta for lunch. I bent down to get a mixing bowl out of the cupboard and felt a horrible pain low in my spine. It went away quite quickly, so I continued with my cooking. Next time I squatted down, aware of my back doing funny things, and on my way back up experienced the same terrible pain. I sat down for a while, ate my bruschetta, and thought perhaps I might go for a nap and rest my back. I got into bed and as a tried shuffling back I experienced a truly horrible, horrible pain. Except this time it didn't go away. I had to sit a cry for a while, and then mum and I went of to the nearest ER. I did a serious of rather unpleasant exercises to test what exactly was hurting. After wards they decided they would like an xray or two to make sure it wasn't anything skeletal- but they assure us it was probably just muscular. The xrays turned up nothing (though we still had to wait 4 hours for the result of course) and I was told I'd be booked in for a CT the next day to rule out a pathological fracture which would be invisible on just an xray
It was a very long night- the first time I've ever experienced pain that I would rank as 10/10. It was difficult getting comfortable, and I need/ed help getting out of and into bed. We eventually headed back to hospital, did the CT and sat around for the mandatory 3 - 4 hours for the results. Its turns out it was a pathological fracture, which explains the pain. The fracture is in my L3 in my spine which has one of the metastasis inside it. This is apparently quite common with bone tumours - it weakens the bone causing it to fracture.
Oncology at TCH has been informed, but they didn't move our appointment with my oncologist forward at all, so they mustn't be too worried. Apparently all there really is to be done is take lots of endone and avoid doing things that cause me pain. Since I'm young it should heal perfectly well, but it may take until I get back into chemo or start radiotherapy to get the tumour itself out of the way a bit.
It was a very long night- the first time I've ever experienced pain that I would rank as 10/10. It was difficult getting comfortable, and I need/ed help getting out of and into bed. We eventually headed back to hospital, did the CT and sat around for the mandatory 3 - 4 hours for the results. Its turns out it was a pathological fracture, which explains the pain. The fracture is in my L3 in my spine which has one of the metastasis inside it. This is apparently quite common with bone tumours - it weakens the bone causing it to fracture.
Oncology at TCH has been informed, but they didn't move our appointment with my oncologist forward at all, so they mustn't be too worried. Apparently all there really is to be done is take lots of endone and avoid doing things that cause me pain. Since I'm young it should heal perfectly well, but it may take until I get back into chemo or start radiotherapy to get the tumour itself out of the way a bit.
Wednesday, September 14, 2011
Good news!
So on tuesday we went back to hospital to se the registrar to talk about how surgery went. It went well :) Though he couldn't answer more specific questions, he had the report and told us basically what it said.
What it said was that they got pretty much everything that was visible. After they take it out they slice it up and look at it through their microscopes to work out how much is a alive or dead or calcified etc. The bit they looked at showed LESS THAN 5% ACTIVE OR LIVING OR WHATEVER TUMOUR. Exciting. However when we looked at the report ourselves it said something about the "first section they looked at" or something showing much higher percent. But it was unclear if that was the first bit from this surgery, or from the initial biopsy or what. We'll have to wait until I see my oncologist next week for a better explanation.
It looks like I will have radiotherapy on my chest as well as bone metastases now, since the tumour was in between the plura there may well be microscopic cells in the chest wall muscle there which were left behind after surgery which need special attention.
So another exciting thing to take from this is that, if the primary site has responded so well, the other sites will have responded well too- perhaps not as well, I would think that soft tissue sites would have greater exposure to blood and therefore chemo and such, so it may not be the same. However, its really good to know that it has been responding so well, considering I'm less than half way through chemo and radiotherapy is yet to be brought into the treatment picture anyway. Even if the chemo becomes less effective in the future, mum and I feel that is a little less of a worry now, considering how much its responded already anyway.
So all these things are good. Feeling quite relieved about all that.
What it said was that they got pretty much everything that was visible. After they take it out they slice it up and look at it through their microscopes to work out how much is a alive or dead or calcified etc. The bit they looked at showed LESS THAN 5% ACTIVE OR LIVING OR WHATEVER TUMOUR. Exciting. However when we looked at the report ourselves it said something about the "first section they looked at" or something showing much higher percent. But it was unclear if that was the first bit from this surgery, or from the initial biopsy or what. We'll have to wait until I see my oncologist next week for a better explanation.
It looks like I will have radiotherapy on my chest as well as bone metastases now, since the tumour was in between the plura there may well be microscopic cells in the chest wall muscle there which were left behind after surgery which need special attention.
So another exciting thing to take from this is that, if the primary site has responded so well, the other sites will have responded well too- perhaps not as well, I would think that soft tissue sites would have greater exposure to blood and therefore chemo and such, so it may not be the same. However, its really good to know that it has been responding so well, considering I'm less than half way through chemo and radiotherapy is yet to be brought into the treatment picture anyway. Even if the chemo becomes less effective in the future, mum and I feel that is a little less of a worry now, considering how much its responded already anyway.
So all these things are good. Feeling quite relieved about all that.
Monday, September 12, 2011
Tedium
Very tedious day. Though i had a lovely time with friends last night, I was very tired when I went to bed and slept very poorly. I was bothered all night by someone claiming a vegan diet could easily cure cancer. Which is untrue. Its actually quite offensive to suggest that all the suffering endured by cancer patients is unnecessary, and that all one needs to do is change their diet. It trivialises the whole thing.
I was very tired and grouchy today as a result, a feeling not improved by running late to hospital only to discover they had no record of an appointment for me with the registrar today. I feel deeply unimpressed by the way my discharge was handled. Some of my medication was left off the discharge letter, and there was no mention made as to when I needed to have stitches or dressings removed. Anyway, we organised another appointment for tomorrow and went up to the ward I was in last week to find out about the stitches. They said today or tomorrow, and that they wouldn't do it there.
SO.
That of course meant driving back across town to the medical centre to wait forever to see a dr for 5 minutes to take out two stitches. Oh, and have my bald head stared at by a full grown woman. I stared right back at her for a moment after I caught her looking and she averted her gaze. I refuse to be made feel uncomfortable in public because of my illness and if anyone starts making me so, I'l turn it right back on them!
I'm still so tired. I'm trying to take endone less frequently every day, with hopes of sleeping properly soon. The endone means i wake up literally once every 1 - 2 hours, confused and jerky. Its hard to get a proper rest. I might have another nap before dinner.
I was very tired and grouchy today as a result, a feeling not improved by running late to hospital only to discover they had no record of an appointment for me with the registrar today. I feel deeply unimpressed by the way my discharge was handled. Some of my medication was left off the discharge letter, and there was no mention made as to when I needed to have stitches or dressings removed. Anyway, we organised another appointment for tomorrow and went up to the ward I was in last week to find out about the stitches. They said today or tomorrow, and that they wouldn't do it there.
SO.
That of course meant driving back across town to the medical centre to wait forever to see a dr for 5 minutes to take out two stitches. Oh, and have my bald head stared at by a full grown woman. I stared right back at her for a moment after I caught her looking and she averted her gaze. I refuse to be made feel uncomfortable in public because of my illness and if anyone starts making me so, I'l turn it right back on them!
I'm still so tired. I'm trying to take endone less frequently every day, with hopes of sleeping properly soon. The endone means i wake up literally once every 1 - 2 hours, confused and jerky. Its hard to get a proper rest. I might have another nap before dinner.
Saturday, September 10, 2011
Super Speedy Heal-ee Powers!
I'm feeling really good. I wake up a bit sore in the mornings and often need a bit of help getting out of chairs and beds, but after getting my drugs down I am able to do normal stuff. Yesterday I not only cooked, but also had a shower and went to a friends bonfire party for a little while! I came back feeling fantastic- getting back to normal things and seeing friends makes the most enormous difference.
I realised last night at this bonfire how few of my close friends actually read this blog! Which is kinda funny- I suppose its because they believe I'l tell anyway. This is true, but I forget things, and there are quite a few people to tell. Some of them were surprised to hear my lung was involved in the surgery at all! haha ahhwell.
Tomorrow I get my stitches out, and see my oncologist or one of his underlings about what comes next when. Though I'm anxious not to leave it too long before I return to chemo, I have a friends floristry competition thing at floriade this saturday and TEDx the following saturday, and desperately hope chemo can wait til after then. It all depends on when I'm healed enough. I dont know when that will be. I'm also concerned about the chemo attacking the fast changing healing cells in my chest and preventing me from recovering properly from surgery, though I dont really know how much of a risk that is to begin with. I'm looking forward to tomorrow though, the surgeons report will have been sent to my oncologist and he'l be able to tell me about ti properly. Its frustrating how the surgeons dont give you anything in writing after the surgery, so all you have are drug addled fuzzy memories about what he said when he visited you in ICU. All very unclear. My understanding is it went well. I dont know if that means he believes it was successful in taking out the whole tumour, or most of it, or a lot of it, or just that it was a tidy and efficient operation.
I was hoping to write more but my laptop is about to go flat- I'l update again tomorrow after seeing the Dr.
I realised last night at this bonfire how few of my close friends actually read this blog! Which is kinda funny- I suppose its because they believe I'l tell anyway. This is true, but I forget things, and there are quite a few people to tell. Some of them were surprised to hear my lung was involved in the surgery at all! haha ahhwell.
Tomorrow I get my stitches out, and see my oncologist or one of his underlings about what comes next when. Though I'm anxious not to leave it too long before I return to chemo, I have a friends floristry competition thing at floriade this saturday and TEDx the following saturday, and desperately hope chemo can wait til after then. It all depends on when I'm healed enough. I dont know when that will be. I'm also concerned about the chemo attacking the fast changing healing cells in my chest and preventing me from recovering properly from surgery, though I dont really know how much of a risk that is to begin with. I'm looking forward to tomorrow though, the surgeons report will have been sent to my oncologist and he'l be able to tell me about ti properly. Its frustrating how the surgeons dont give you anything in writing after the surgery, so all you have are drug addled fuzzy memories about what he said when he visited you in ICU. All very unclear. My understanding is it went well. I dont know if that means he believes it was successful in taking out the whole tumour, or most of it, or a lot of it, or just that it was a tidy and efficient operation.
I was hoping to write more but my laptop is about to go flat- I'l update again tomorrow after seeing the Dr.
Wednesday, September 7, 2011
Sunshine!!
I am home! Left hospital yesterday. Will write more tonight as I'm on my phone, but thought I'd just say that I'm out of hospital and about to go for a drive with mum, since the only sunshine iv had Ina week has been the drive home. :)
Monday, September 5, 2011
Hooosssppiitaalll
Been fairly rough few days. Opioids really mess with me. I can take a lot, so long as I can maintain a sort of internal equilibrium, but drugs make it very difficult to do that. Just having the mental capacity to organise my thoughts into a decent sense-making blog post is taking so much concentration and energy.
Yesterday I was lucky enough to get moved to a bigger room of my own, which helps everything a lot. More room, less noise, more privacy and my own bathroom! Quite a few frustrating things have been going on, so its been really wonderful having a space to discuss things with mum and even have visiters. Its great not to have to spend another night sharing the room with that rude lady. From what mum and I could pt together she's had a pretty terrible time, I think she'd had a tube down her throat before I got there as there were heaps of comments about her being able to speak again, how long she'd been there- plus apparently she'd been in ICU before me. So I have forgiven her. But yeah, as it turns out the nurses aren't really allowed to tell people when to put on their tv. However, the second and final night we shared the room she waited until 6am before turning it on, which I was ok with.
The day that followed this was pretty up and down. I had a decent sleep (despite 6am tv) and so was feeling ok in the morning. This was ruined by a very disappointing nurse, who seemed vaguely irritated by my pushing the help button, lacked enthusiasm and confidence and left me standing in the bathroom pulling the assistance needed string thing repeatedly for 5 minutes. Standing up was a big enough task, standing still and then trying to push a tower thing with multiple pain killer-ee things hanging off it through a heavy door and over a slight hill (very slight really, but enormous to people in my situation) was beyond exhausting. I was not in a good way anyhow and found myself very upset. Which isn't so good when heavy breathing is painful, you need to be able to breathe properly through your nose to get 100% oxygen saturation from the nasal prongs, and you dont have eyelashes to help get the tears out of your eyes (a use I never realised they had until they were gone). This all sounds very pathetic and a bit unnecessary to share in such detail, but it was actually one of the most upsetting events of the last few days. The feelings of powerlessness and wrongness, the reminder that I have very limited control over my situation, the experience of being weak as an anaemic kitten... things I'd rather not have had to experience during the "prime of my physical life".
....OK so I wrote the above yesterday. I'm getting increasingly confused about days. At some point in the last few days though, a nurse did two silly things. The first one was she brought me a pill and I asked her: "what is this called? Is it the anti inflammatory I had this morning? Do I need to eat with this?"
Her responses were (from what I could make out between the umms and ahhhs) "Vniailsunlianv", "no" and "noommmmmmmhmmm??"
So she was wrong or just unclear about all these things. I saw the actual name on the page, and googled it, providing me with all the answers I needed in moheticments. Later on, she hooked me up tot he wrong localanaesthetic. I barely got through any though before another nurse came in and it was the right one and changed it. The two drugs were fairly similar and no harm was done - but it was very disturbing to think that I can just be given the wrong thing, anything, and there is only is much that can be done to prevent it.
....OK now since writing all THAT, I had the second of my tubes taken out! Wooo! The first was taken out yesterday after an xray and a lot of draining. It was very uncomfortable and made me particularly nervous as on of the people removing it was the incompetent nurse for the day before. Today it went somewhat quicker, was not very painful, and the nurses communicated more clearly. I feel much better having them out. I now only have one attachment, the local anaesthetic pain buster tube thing. I dont expect this to hurt too much as the tube apparently is even thinner than the tube in cannulars.
We've come to the conclusion I'm allergic to the oxycontin- which is the longer acting slow release pain drug I've been on. It makes me pretty sick. This puts more pressure on me to have regular endone, which I loathe. It just knocks me out. I just want to sleep all da right now!
I haven't read through this whole post so i dont know how much sense it mkes. However I'm going to try some walking now and then maybe a shower, as looking at screens make me tired and headachy.
Thank you all for the love and kind words
Yesterday I was lucky enough to get moved to a bigger room of my own, which helps everything a lot. More room, less noise, more privacy and my own bathroom! Quite a few frustrating things have been going on, so its been really wonderful having a space to discuss things with mum and even have visiters. Its great not to have to spend another night sharing the room with that rude lady. From what mum and I could pt together she's had a pretty terrible time, I think she'd had a tube down her throat before I got there as there were heaps of comments about her being able to speak again, how long she'd been there- plus apparently she'd been in ICU before me. So I have forgiven her. But yeah, as it turns out the nurses aren't really allowed to tell people when to put on their tv. However, the second and final night we shared the room she waited until 6am before turning it on, which I was ok with.
The day that followed this was pretty up and down. I had a decent sleep (despite 6am tv) and so was feeling ok in the morning. This was ruined by a very disappointing nurse, who seemed vaguely irritated by my pushing the help button, lacked enthusiasm and confidence and left me standing in the bathroom pulling the assistance needed string thing repeatedly for 5 minutes. Standing up was a big enough task, standing still and then trying to push a tower thing with multiple pain killer-ee things hanging off it through a heavy door and over a slight hill (very slight really, but enormous to people in my situation) was beyond exhausting. I was not in a good way anyhow and found myself very upset. Which isn't so good when heavy breathing is painful, you need to be able to breathe properly through your nose to get 100% oxygen saturation from the nasal prongs, and you dont have eyelashes to help get the tears out of your eyes (a use I never realised they had until they were gone). This all sounds very pathetic and a bit unnecessary to share in such detail, but it was actually one of the most upsetting events of the last few days. The feelings of powerlessness and wrongness, the reminder that I have very limited control over my situation, the experience of being weak as an anaemic kitten... things I'd rather not have had to experience during the "prime of my physical life".
....OK so I wrote the above yesterday. I'm getting increasingly confused about days. At some point in the last few days though, a nurse did two silly things. The first one was she brought me a pill and I asked her: "what is this called? Is it the anti inflammatory I had this morning? Do I need to eat with this?"
Her responses were (from what I could make out between the umms and ahhhs) "Vniailsunlianv", "no" and "noommmmmmmhmmm??"
So she was wrong or just unclear about all these things. I saw the actual name on the page, and googled it, providing me with all the answers I needed in moheticments. Later on, she hooked me up tot he wrong localanaesthetic. I barely got through any though before another nurse came in and it was the right one and changed it. The two drugs were fairly similar and no harm was done - but it was very disturbing to think that I can just be given the wrong thing, anything, and there is only is much that can be done to prevent it.
....OK now since writing all THAT, I had the second of my tubes taken out! Wooo! The first was taken out yesterday after an xray and a lot of draining. It was very uncomfortable and made me particularly nervous as on of the people removing it was the incompetent nurse for the day before. Today it went somewhat quicker, was not very painful, and the nurses communicated more clearly. I feel much better having them out. I now only have one attachment, the local anaesthetic pain buster tube thing. I dont expect this to hurt too much as the tube apparently is even thinner than the tube in cannulars.
We've come to the conclusion I'm allergic to the oxycontin- which is the longer acting slow release pain drug I've been on. It makes me pretty sick. This puts more pressure on me to have regular endone, which I loathe. It just knocks me out. I just want to sleep all da right now!
I haven't read through this whole post so i dont know how much sense it mkes. However I'm going to try some walking now and then maybe a shower, as looking at screens make me tired and headachy.
Thank you all for the love and kind words
Friday, September 2, 2011
Awake-ish-er
Not feeling too bad at all right now, in fact I jut recorded a short and very unattractive vlog on my iPhone, only to discoverit is beyond me right now k work out how to get it on the Internet. Gist is:
- morphine and pain buster to e removed tomorrow and replaced with oxycontin pills
- top drain tube in lung to be removed tomorrow
- been able to walk to toilets and doing short halls today, coughing and breathing deep and stuff
- room mate turned on tv this morn at 4 50am. If she does it again tonight... I will explode.
-local abaesthetic/painbuster causes numbness around middle, while morphine causes itchiness . these two things combined = horrendous and surreal discomfort.
- lots of people remember me from last time.
- morphine and pain buster to e removed tomorrow and replaced with oxycontin pills
- top drain tube in lung to be removed tomorrow
- been able to walk to toilets and doing short halls today, coughing and breathing deep and stuff
- room mate turned on tv this morn at 4 50am. If she does it again tonight... I will explode.
-local abaesthetic/painbuster causes numbness around middle, while morphine causes itchiness . these two things combined = horrendous and surreal discomfort.
- lots of people remember me from last time.
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