I think its been almost two weeks again - I dont remember much of what I've done since last chemo. The standout events would have to be last weekend and tonight. I got to see a few friends last saturday as well as the second version of Frankenstein (did I mention this fabulous production in a previous post? I hope so - it was directed by Danny Boyle and generally excellent). I hope Dendy shows more of these National Theatre Live productions from the UK. Assuming they're all to a similar standard.
On Sunday I attended a high tea organised by the Warwick Foundation (I'm never sure if that's said War-wick, or Wor-rick). They're a group who do nice things for young adult patients (18 - 40) like organise high teas. It was great, I took mum as my plus one and we met some really nice people and talked about all that treatment stuff that is just day to day life for us, yet not something we get to talk about casually very often with non medical professionals. Plus the tea was lovely. Best scone I've ever had for sure. Later that evening I had dinner with a few more friends. I had eggs benedict, so perhaps it was more brinner than dinner. When they say All Day Breakfast on Gus's menu, they mean all day.
Tonight I had dinner at The London with a group of Canteen members, all 18+. It was my first Canteen event. It was bigger than the Warwick tea (9 guests) with 12 people I think. It was great to meet two young patients/survivors; one was actually just completed treatment for Ewing Sarcoma 2 weeks ago. He opted to do the IE/VAC chemo protocol I was on initially on a two week cycle (what they do with kids) where I had gone with the three week which is more usual for people our age. As a result he is finished after 7 months, half the time I've been in treatment and the treatment appears to have been successful. Its difficult not to think about whether or not that could have been the case for me too. But there are a lot of important differences - how far along mine was when it was found (his met/s weren't so far along I think; I already had three that were a reasonable size by the time it was caught.) Plus the location and the size and the necessity of major surgery on vital organs for me. We shall never know what difference it may or may not have made, so there is absolutely no point wondering.
Talking to other patients - and even other types of members of canteen - does seem to highlight just how much treatment I've had; how long I've been in treatment, how intensive its been in comparison to some other protocols, how I've had radio as well as chemo and surgery and none of them just once.
Been having transfusions fairly regularly since I was discharged it seems, but my marrow does seem to be slowly improving I think. Though I would not be surprised if I quite some haemoglobin after chemo tomorrow. Maybe they wont check and it'l wait until Monday. That'd be better - its a very short day tomorrow without it, and there are things I'd like to do after treatment tomorrow if I have the energy (fingers crossed!).
Definitely been sorer this last week than I have been recently. Particularly in my lower right back (the spot in my sacrum I think), upper back (I think there's a spot there) the tops of my femurs/in my hips (spots there too), my right shoulder (top site from the rod surgery) and my right shin (hopefully thats juist from walking and not something new. I dont know if this means growing, healing, my body getting used to my current dose of hydromorph, or the fragile bits of my body responding to my being much more active than I have in many months.
I'm starting to feel a bit more normal again. Well, a bit more like I did in summer before all the new stuff. Still doing lots of cooking and feeling like doing stuff more. I still dont really sleep longer than 3 - 6 hours at a time so fatigue still keeping me from being as social as I'd like (plus its super duper cold). Also starting to make my room feel like a bedroom again rather than a space to dump medical papers and sleep.
Thursday, June 28, 2012
Saturday, June 16, 2012
Not so bad
This round hasn't made me sick! I'm very tired and dont get much sleep, but its absolutely nothing in comparison to the last time I had this combo of drugs. Which is indescribably wonderful - not only does it mean I get this time with my aunt and nana but it means my mum gets time with her sister and mother rather than having to take care of me. Also great not having to be checking my temp every 30 min like last time hoping it doesn't hit 38 (which would necessitate a trip to the ER).
So its actually been a fairly pleasant weekend with the exception of my mood being a bit crazy of course with the fatigue and the increased dose of steroids knocking me round that bit extra. But again its all going much better than we could have hoped. I'm kind of afraid however that it means they put the dosage down without telling me, and thats why its gone so much better, giving me false hope for future rounds and a less effective round of treatment. I dont think my oncologist would have done that though. And I'm pretty sure all decisions like that have to go through him. Me also actually I'm pretty sure.
Anyway, thought I ought let everyone know I'm doing ok, just really tired. There really needs to be another word in there somewhere for describing chemo fatigue. Or I guess generally medically induced fatigue. I dont think you can effectively communicate the exhaustion you sometimes feel properly to people who havent experienced it.
So its actually been a fairly pleasant weekend with the exception of my mood being a bit crazy of course with the fatigue and the increased dose of steroids knocking me round that bit extra. But again its all going much better than we could have hoped. I'm kind of afraid however that it means they put the dosage down without telling me, and thats why its gone so much better, giving me false hope for future rounds and a less effective round of treatment. I dont think my oncologist would have done that though. And I'm pretty sure all decisions like that have to go through him. Me also actually I'm pretty sure.
Anyway, thought I ought let everyone know I'm doing ok, just really tired. There really needs to be another word in there somewhere for describing chemo fatigue. Or I guess generally medically induced fatigue. I dont think you can effectively communicate the exhaustion you sometimes feel properly to people who havent experienced it.
Thursday, June 14, 2012
Chemo
I had a very strange day yesterday. I woke up feeling absolutely dreadful - just exhausted and unwell and deeply anxious, presumably about chemo and the day/s that would follow. There was some lovely communal cooking and eating with my family though which was good - seems just keeping as occupied as is possible is probably the only thing to be done on those days. I felt better by evening.
I woke up this morning (a chemo day) feeling much better. Its strange. I function best going to sleep about 11 30 or 12, waking up at 4something am, then at 6something, and then dozing waking every hour or so after that getting up usually before 9. The night before I'd had a valium and slept through the night and woke feeling terrible. I definitely work better on too little than too much sleep. I can always have naps if needed, but you cant undo sleep! Anyway, woke up feeling good, had breakfast out with my nana and aunt and mum (best eggs benny ever, cant remember the name of the place though!), went to hospital, had chemo, and was still feeling good! Well, heavy but not sick or anything. So far still feeling good but increasingly doped up. I think we're better equipped this round and know that its not an infection, and shouldn't last more than 24 hours.
I'm falling asleep as I write this. I feel so well otherwise though, I really hope that I dont wake up in the middle of the night like last time on these drugs feeling like death and unable to keep down my pills. It was really quite a nightmare, but hopefully my greatly improved general health (and the bag of platelets I got today) will make it easier. Speaking of the platelets, they have to do this thing where they toss them around a bit, they just have to keep them moving constantly, they actually have a little machine for it, which I filmed in action because I thought it was a bit funny. Might upload it actually.
I have so much gratitude for blood donors - cancer patients receive a very large portion of donated blood. I've certainly received my share. I'm so lucky to live where I do when I dont have to worry about getting it when I need it, where I dont have to worry about all sorts of things. There is a very effective and very strong anti nausea pill which is about $300 a pop - of course the gov pays for most of that for us, but you hear about people in america saving to be able to afford these pills and often not being able to get them and so just having horrible nausea. And of course there are much worse stories you hear from the US - families losing their houses, and then their parents losing their houses too just trying to afford treatments to keep this person alive.
I'm so out of it now, I've written (as usual) too many paragraphs about too little which probably make very little sense. So I might stop now.
Hope everyone is well, and thnakyou so much for the gifts from Adelaide and Perth, everyone is so lovely and generous.
I woke up this morning (a chemo day) feeling much better. Its strange. I function best going to sleep about 11 30 or 12, waking up at 4something am, then at 6something, and then dozing waking every hour or so after that getting up usually before 9. The night before I'd had a valium and slept through the night and woke feeling terrible. I definitely work better on too little than too much sleep. I can always have naps if needed, but you cant undo sleep! Anyway, woke up feeling good, had breakfast out with my nana and aunt and mum (best eggs benny ever, cant remember the name of the place though!), went to hospital, had chemo, and was still feeling good! Well, heavy but not sick or anything. So far still feeling good but increasingly doped up. I think we're better equipped this round and know that its not an infection, and shouldn't last more than 24 hours.
I'm falling asleep as I write this. I feel so well otherwise though, I really hope that I dont wake up in the middle of the night like last time on these drugs feeling like death and unable to keep down my pills. It was really quite a nightmare, but hopefully my greatly improved general health (and the bag of platelets I got today) will make it easier. Speaking of the platelets, they have to do this thing where they toss them around a bit, they just have to keep them moving constantly, they actually have a little machine for it, which I filmed in action because I thought it was a bit funny. Might upload it actually.
I have so much gratitude for blood donors - cancer patients receive a very large portion of donated blood. I've certainly received my share. I'm so lucky to live where I do when I dont have to worry about getting it when I need it, where I dont have to worry about all sorts of things. There is a very effective and very strong anti nausea pill which is about $300 a pop - of course the gov pays for most of that for us, but you hear about people in america saving to be able to afford these pills and often not being able to get them and so just having horrible nausea. And of course there are much worse stories you hear from the US - families losing their houses, and then their parents losing their houses too just trying to afford treatments to keep this person alive.
I'm so out of it now, I've written (as usual) too many paragraphs about too little which probably make very little sense. So I might stop now.
Hope everyone is well, and thnakyou so much for the gifts from Adelaide and Perth, everyone is so lovely and generous.
Sunday, June 10, 2012
Cotton wool
Since sometime last week I've been having a lot of pain in my neck, in my jaw and for a while a terrible and relentless headache. It was just a few days after we'd reduced the dex dose, and sure enough when we went back up to 3mg the headache improved dramatically. My neck is better than it was, but my jaw still hurts and my ears feel like they have cotton wool in them! Could it be my wisdom teeth? Maybe they're swelling and making me a bit deaf..? I dunno. But its really annoying. Apparently there is something to do with vit D and hearing. Maybe thats a thing. But thats when you have a deficiency and I'm on supplements right now. Well, I just hope its not a sign of anything more serious. I dont exactly have the best luck. Usually when I have a new pain, its a bad sign.
I'm a bit sorer in all my other spots as well. I hope this is due to my being more active around my house and opting to walk rather than be wheeled about and not because things are getting worse/spreading or because my body is rapidly adjusting again to the doses of analgesia. Its probably the former. It is great to be walking about again though, even if with the return of pain in my hips and legs I'm back to walking kinda funny.
I had a blood transfusion on saturday - I think my port has moved again because it took three nurses five attempts to get the needle in the right place! Not really an issue, just means it'l be super bruised when they access it again tomorrow to take blood. They have to do a lot of poking and prodding and have to press down to hold the port still through the skin so they can get the needle in the middle, more so for me than others as its quite deep and they cant see it at all.
Had a lovely day with a visiting relative last week, and have 2 more visiting from tomorrow for a week, so yay more easy socialising and people to cook for. I'm doing some cooking most days - we bought a breville wizz yesterday! Very exciting, especially for those of us who tire of mixing rather quickly. Its quite pretty, not as lovely as the big red one that cost like $800 from the fancy brand, but it matches our toaster and kettle and I dont think we'll use it often or professionally enough to justify spending that much on it.
Next chemo is thursday, and its the nasty one. I'm a lot well-er generally than I was last time so hopefully I wont get so ill. If not I'l just have to wait it out I spose, as one does. I really wish life had a fast forward button. When you're feeling that unwell and there's that added anxiety of what if I can keep my pills down/get dehydrated/actually have a nasty infection rather than a reaction to chemo and should be in hospital right now, its pretty difficult to stay positive and one does tend to feel quite hopeless. I used to do a fair bit of meditation - I'm not certain why I stopped, I guess I got too tired. But I keep thinking I should make more of an effort to practice that. It would certainly help.
Its frustrating with all these COT (community outreach team) appointments trying to organise seeing friends. My bloods are so unpredictable you never know if I'l be called back and have to spend several hours getting bloods, or if it'l just be 15 minutes in the morning with the rest of the day free. Ahh well, I'm gradually improving so hopefully I wont need them for too much longer.
I'm a bit sorer in all my other spots as well. I hope this is due to my being more active around my house and opting to walk rather than be wheeled about and not because things are getting worse/spreading or because my body is rapidly adjusting again to the doses of analgesia. Its probably the former. It is great to be walking about again though, even if with the return of pain in my hips and legs I'm back to walking kinda funny.
I had a blood transfusion on saturday - I think my port has moved again because it took three nurses five attempts to get the needle in the right place! Not really an issue, just means it'l be super bruised when they access it again tomorrow to take blood. They have to do a lot of poking and prodding and have to press down to hold the port still through the skin so they can get the needle in the middle, more so for me than others as its quite deep and they cant see it at all.
Had a lovely day with a visiting relative last week, and have 2 more visiting from tomorrow for a week, so yay more easy socialising and people to cook for. I'm doing some cooking most days - we bought a breville wizz yesterday! Very exciting, especially for those of us who tire of mixing rather quickly. Its quite pretty, not as lovely as the big red one that cost like $800 from the fancy brand, but it matches our toaster and kettle and I dont think we'll use it often or professionally enough to justify spending that much on it.
Next chemo is thursday, and its the nasty one. I'm a lot well-er generally than I was last time so hopefully I wont get so ill. If not I'l just have to wait it out I spose, as one does. I really wish life had a fast forward button. When you're feeling that unwell and there's that added anxiety of what if I can keep my pills down/get dehydrated/actually have a nasty infection rather than a reaction to chemo and should be in hospital right now, its pretty difficult to stay positive and one does tend to feel quite hopeless. I used to do a fair bit of meditation - I'm not certain why I stopped, I guess I got too tired. But I keep thinking I should make more of an effort to practice that. It would certainly help.
Its frustrating with all these COT (community outreach team) appointments trying to organise seeing friends. My bloods are so unpredictable you never know if I'l be called back and have to spend several hours getting bloods, or if it'l just be 15 minutes in the morning with the rest of the day free. Ahh well, I'm gradually improving so hopefully I wont need them for too much longer.
Tuesday, June 5, 2012
Freedom
Well I had the second lot of this chemo, which includes a second, nastier drug. It made my very ill the day after, and left me a bit queasy for a few days after that. Very unpleasant, but thankfully short lived. I think it was last tuesday that I was discharged? Maybe. Actually I think it was later in the week. I cant quite remember, I've been in and out of hospital a lot anyway. Because my bloods are so precarious I have to go in every monday wednesday and friday for blood tests and on saturday I had a platelet transfusion. Still covered in bruises though! Its nice not to have to worry quite so much about the slightest of cuts though (platelets are the things in your blood that makes it clot, and so stops cuts from just bleeding and bleeding.
However I have now bounced back pretty well, better than was expected of me I think actually. The reaction to chemo was thought at first to possibly be an infection, which was concerning since I was quite neutropenic for a few days, but all but one of the dr's are confident it was the chemotherapy.
I have the milder chemo this thursday, and then the nasty one again next thursday. The positive thing is I dont have to take mesna (the hideously disgusting pills of which I have to take 10 and feel sick just thinking about now) with either drug, which means doing them both as an outpatient will be alright! Well, the first at least. I have hopes that they will just load me up with drugs for the second one, and its also possible they'll weaken/lessen the dose. Which I have mixed feelings about. I think it was already at 75%. I mean, we still want it to work. Though its easy now I'm feeling ok to say I'l tough it out, at the time it was pretty unpleasant.
Pain is pretty well under control, on a greatly reduced dose, which is swell. I've had some pretty intense fatigue though which has made managing more than the necessary appointments and some home cooking a bit difficult. However that seems to be getting better and this coming chemo should hopefully not knock me around too much so I should eventually be getting out a bit more.
However I have now bounced back pretty well, better than was expected of me I think actually. The reaction to chemo was thought at first to possibly be an infection, which was concerning since I was quite neutropenic for a few days, but all but one of the dr's are confident it was the chemotherapy.
I have the milder chemo this thursday, and then the nasty one again next thursday. The positive thing is I dont have to take mesna (the hideously disgusting pills of which I have to take 10 and feel sick just thinking about now) with either drug, which means doing them both as an outpatient will be alright! Well, the first at least. I have hopes that they will just load me up with drugs for the second one, and its also possible they'll weaken/lessen the dose. Which I have mixed feelings about. I think it was already at 75%. I mean, we still want it to work. Though its easy now I'm feeling ok to say I'l tough it out, at the time it was pretty unpleasant.
Pain is pretty well under control, on a greatly reduced dose, which is swell. I've had some pretty intense fatigue though which has made managing more than the necessary appointments and some home cooking a bit difficult. However that seems to be getting better and this coming chemo should hopefully not knock me around too much so I should eventually be getting out a bit more.
Subscribe to:
Posts (Atom)