A question form an Anonymous reader and commenter has prompted me to post another post tonight about the more practical side of things. Which is hard, because we dont really know.... anything. So it might be easier to tell you what I dont know, than what I do.
My next oncologist appointment is on friday (I think/hope). I will be asking my oncologist:
- Am I starting the next round on monday or tuesday of next week?
- How many more rounds do I have? (mum and I think it will be like 3 or 4. I think. Basically we're expecting it to go until around my birthday in mid february)
- So with this new chemical replacing the doxorubicin, what kind of time will I be spending in the treatment room? Will it still be just one day? Or will it take a few days to administer? How many?
- Does this one have any yucky long term side effects like the doxo did?
- Considering the first choice was the doxo despite it having the potential to cause heart problems, is this chemical expected to be less effective?
- After I finish treatment, whats the protocol? At what intervals will I be getting scanned to see if the cancer returned?
- What happens if when I finish the planned number of treatments and get that PET scan, there are still cancerous cells showing up?
- Is that at all likely?
- Is there any point speculating about the possibility of radiotherapy on the surgery site at this point?
- If that were to go ahead, would it require a trip to sydney?
- I've heard about a study/studies that indiciate that women who get straight back to work after completing treatment from breast cancer tend to have the best results. Do you think this can be extended to all cancer patients? Do you think this was because getting back to a normal routine is just that beneficial, or is it probably more that those women were the ones doing well enough in themselves already, and that being at that level of physical and mental health that quickly is in fact the major factor. Or is it probably a combination of both?
- What happens with my disability pension when I finish chemo? What if I dont go back to working straight away?
- Is there really a time frame in which if nerves are going to heal after surgery, they will have done so?
- At this point do you think my L3 is still actually fractured, or would it be mostly inflammation and nerves and stuff at this point?
- WIll my sense of taste ever go back to what it was before I started treatment?
...Well, I'll forget a lot of them, but hopefully my parents will have similar questions.
Tuesday, November 22, 2011
Three weeks?!? Woops.
So as it turns out its been three weeks since my last blog post. Dont panic! I'm ok. In fact, right now I'm probably the best I've been since surgery.
I'm not sure how it got to be so long since my last post. There was chemo, which was a little nastier than the last round despite still being just one day sans nastiest chemical. I think the nastiness came about because I was still doing better physically, but still very tired. As a result I went a bit stir crazy. The worst part of recovering this round was, apart from the fatigue, that I spent three days crying pretty well constantly. It wasn't dramatic crying. It was really weird. The best way I can describe it is that I was suffocated by the horrible recent past and the frightening unknown future pressing in I think. Just worn down and feeling like it was never going to end.
The strangest thing about feeling like that is how it turns out to be really a side effect of the chemo - I woke up on the tuesday (I think) following chemo feeling pretty well fine. Since then I've been getting out and seeing friends and gradually regaining some semblance of independence, which has been amazing. Last night we switched from 4mg of hydromorph every 24 hours to a low dose of endone as needed (been about three times in the last 24 hours, though to be honest all I did was play videogames so I wasn't exactly putting pressure on my back!). You might be remembering that I was initially on endone (well, oxycontin, but its pretty well the same I think) and switched to hydromorph because I didn't like the way endone made me feel in my head. Hopefully this shouldn't be much of a problem because of the low dose, and the fact there is still some pain for it to be covering.
Though being in pain means that opiates dont make me feel too stoned (not sure how it works, but being in pain changes the effect it has on you to just pain cover) I am aware of the effects its had on things like memory over the past number of months and am looking forward to being completely off drugs hopefully in a few weeks. My memory of this entire year has been blurry, but the last few months are so unreal in my mind - what I can actually recall of them anyway. I dont really remember things unless talking about them in depth with people. It takes a bit of conscious effort to find and access memories. And even when I do the time line is... well, I dont really have one. Its mostly about where I was and whether I was in pain or sick.
So, I'm now technically a member of CanTeen, but am yet to attend any camps/get togethers/parties. The first one I expect to get to is the christmas party, which I'm a little uncertain about. It seems weird to be new amongst a group at the xmas party. But it'l be great to have more contact with people in similar situations. Or just young people who understand what cancer is, and have some idea how to react. That is, they know not to "react" and instead just talk to me as a person. I've met a number of other young patients, mostly through tumblr but also one or two through this blog, making it all the more rewarding. Its good to read about these things and be able to offer and receive empathy and suport from people my age.
Its difficult though, when you come across someone who is yet to begin treatment - who's at the beginning of their cancer journey. Because you know there is nothing you can say that will adequately prepare them from life as a cancer patient. For just how much worse the treatment is than the illness (or so it seems much of the time). The mental struggle with that concept, as it just keeps going and going. Thats the where you really need your strength. Going through cancer, sometimes it feels like its just happening - like you aren't active in the experience. But just not choosing to relax or even stop treatment must be the most impossible thing for young people living on their own who dont have the support network I do to keep things in perspective.
The other day I was talking to some friends about the puppy dog "are you dying!>!" eyes you get from a lot fo people. One of them said, "I dont know how you dela with it, it drives me crazy just seeing people do it to you". I guess I deal with it because I know that no one (my age in particular, older people have less of an excuse) as any sort of precedent in their personal experience of how to react to a young adult with cancer. Because its such a complicated situation that they know they dont really know much about, people are sort of lost about what they should say, if anything. Which I understand. We're an extremely socially awkward society. Other cultures have rules and codes of conduct around grief and illness and stuff. We have conventions, most of which are counter productive and unhelpful.
I'm getting vague now. Must be time to get some sleep. I promise to try not to leave it so long between posts again! Gnight world x
I'm not sure how it got to be so long since my last post. There was chemo, which was a little nastier than the last round despite still being just one day sans nastiest chemical. I think the nastiness came about because I was still doing better physically, but still very tired. As a result I went a bit stir crazy. The worst part of recovering this round was, apart from the fatigue, that I spent three days crying pretty well constantly. It wasn't dramatic crying. It was really weird. The best way I can describe it is that I was suffocated by the horrible recent past and the frightening unknown future pressing in I think. Just worn down and feeling like it was never going to end.
The strangest thing about feeling like that is how it turns out to be really a side effect of the chemo - I woke up on the tuesday (I think) following chemo feeling pretty well fine. Since then I've been getting out and seeing friends and gradually regaining some semblance of independence, which has been amazing. Last night we switched from 4mg of hydromorph every 24 hours to a low dose of endone as needed (been about three times in the last 24 hours, though to be honest all I did was play videogames so I wasn't exactly putting pressure on my back!). You might be remembering that I was initially on endone (well, oxycontin, but its pretty well the same I think) and switched to hydromorph because I didn't like the way endone made me feel in my head. Hopefully this shouldn't be much of a problem because of the low dose, and the fact there is still some pain for it to be covering.
Though being in pain means that opiates dont make me feel too stoned (not sure how it works, but being in pain changes the effect it has on you to just pain cover) I am aware of the effects its had on things like memory over the past number of months and am looking forward to being completely off drugs hopefully in a few weeks. My memory of this entire year has been blurry, but the last few months are so unreal in my mind - what I can actually recall of them anyway. I dont really remember things unless talking about them in depth with people. It takes a bit of conscious effort to find and access memories. And even when I do the time line is... well, I dont really have one. Its mostly about where I was and whether I was in pain or sick.
So, I'm now technically a member of CanTeen, but am yet to attend any camps/get togethers/parties. The first one I expect to get to is the christmas party, which I'm a little uncertain about. It seems weird to be new amongst a group at the xmas party. But it'l be great to have more contact with people in similar situations. Or just young people who understand what cancer is, and have some idea how to react. That is, they know not to "react" and instead just talk to me as a person. I've met a number of other young patients, mostly through tumblr but also one or two through this blog, making it all the more rewarding. Its good to read about these things and be able to offer and receive empathy and suport from people my age.
Its difficult though, when you come across someone who is yet to begin treatment - who's at the beginning of their cancer journey. Because you know there is nothing you can say that will adequately prepare them from life as a cancer patient. For just how much worse the treatment is than the illness (or so it seems much of the time). The mental struggle with that concept, as it just keeps going and going. Thats the where you really need your strength. Going through cancer, sometimes it feels like its just happening - like you aren't active in the experience. But just not choosing to relax or even stop treatment must be the most impossible thing for young people living on their own who dont have the support network I do to keep things in perspective.
The other day I was talking to some friends about the puppy dog "are you dying!>!" eyes you get from a lot fo people. One of them said, "I dont know how you dela with it, it drives me crazy just seeing people do it to you". I guess I deal with it because I know that no one (my age in particular, older people have less of an excuse) as any sort of precedent in their personal experience of how to react to a young adult with cancer. Because its such a complicated situation that they know they dont really know much about, people are sort of lost about what they should say, if anything. Which I understand. We're an extremely socially awkward society. Other cultures have rules and codes of conduct around grief and illness and stuff. We have conventions, most of which are counter productive and unhelpful.
I'm getting vague now. Must be time to get some sleep. I promise to try not to leave it so long between posts again! Gnight world x
Thursday, November 3, 2011
United states?
So, this blog gets regular visits from people in the US. Other countries in europe too, but heaps more form the US and I'm curious as to if you're someone I know from tumblr? Or twitter? Or maybe a total stranger. Anyway, thanks fo following I suppose? Hah.
Had a pretty rough day yesterday. Was sick a lot for no apparent reason. I was very tired as we had to be up early to get to an appointment with my oncologist. The nasty drug they left out last round, doxorubicin, is apparently all done! It can lead to heart problems, so there is a limit to how many doses you can have, and I've reached that limit apparently. Its to be replaced with another drug whose name I cant remember, which would be excited except that its apparently pretty similar in how it will effect me. Unfortunately since I wasn't feeling all too well I forgot to ask how long it takes to be administered. Would it take a number of days? Hours? Minutes? it would eb great if it was just one dose each round so I could have just the one day each month, btu I mustn't get my hopes up on that front.
I got home and went straight to bed. I slept a few hours and got up and had an antiemetic. This one (maxolon) makes me feel pretty terrible. But it stopped the vomiting. So it was a pretty rough day. But I slept well that night.
Next chemo is next wednesday. Once again just one day. Looking forward to when I recover from that. I'm expecting to be feeling pretty good.
Had a pretty rough day yesterday. Was sick a lot for no apparent reason. I was very tired as we had to be up early to get to an appointment with my oncologist. The nasty drug they left out last round, doxorubicin, is apparently all done! It can lead to heart problems, so there is a limit to how many doses you can have, and I've reached that limit apparently. Its to be replaced with another drug whose name I cant remember, which would be excited except that its apparently pretty similar in how it will effect me. Unfortunately since I wasn't feeling all too well I forgot to ask how long it takes to be administered. Would it take a number of days? Hours? Minutes? it would eb great if it was just one dose each round so I could have just the one day each month, btu I mustn't get my hopes up on that front.
I got home and went straight to bed. I slept a few hours and got up and had an antiemetic. This one (maxolon) makes me feel pretty terrible. But it stopped the vomiting. So it was a pretty rough day. But I slept well that night.
Next chemo is next wednesday. Once again just one day. Looking forward to when I recover from that. I'm expecting to be feeling pretty good.
Tuesday, November 1, 2011
Got to admit, its getting better
I've been doing much better since I last wrote. Very little nausea since the last chemo, and my back has been much better! We've cut down to 8mg from the 12 what must be a week ago now, and I've had very little discomfort. I'm able to get myself around the house and do a bit of cooking and waddle around in the pool a little! I've been having visits from friends and had some opportunities to wear some of my nice new things I've bought online.
I've been out a couple of times for lunch with mum and my brother, and even gone out to see a comedian. However since I've spent the last few months sitting or lying down my level of fitness is such that I cant really just hang around in town, as I cant walk terribly far before I need to sit down. Despite this though I'm eating pretty normally again and drinking enough so I'm not getting dehydrated every other day as I was.
So I'm doing better, and since I've already had surgery, the back is healing up nicely (hopefully, its not like I can feel it either way) and radiotherapy is probably all done with I'm hopefully over the worst and everything will just get better from now on. My friends and family are all being so supportive and kind - even strangers on the internet who find this blog or my twitter etc are so generous. I've even received a few cards and itunes gift vouchers from some very kind family friends in Perth! (thank you if you read this!). I was talking to my GP the other day and she was talking about a patient they had who was a young man on exchange from china living here alone who was diagnosed with testicular cancer. He was afraid to tell his parents back home because he knew they couldn't afford to come to australia to take care of him or visit, so he dealt with it alone, in a foreign country with no family and all the expenses and travel managed himself... Hearing things like this I just feel so grateful to have the support of my amazing family and friends. The boy recovered fine, by the way. Apparently testicular cancer has a really great prognosis and his family now know.
I've been out a couple of times for lunch with mum and my brother, and even gone out to see a comedian. However since I've spent the last few months sitting or lying down my level of fitness is such that I cant really just hang around in town, as I cant walk terribly far before I need to sit down. Despite this though I'm eating pretty normally again and drinking enough so I'm not getting dehydrated every other day as I was.
So I'm doing better, and since I've already had surgery, the back is healing up nicely (hopefully, its not like I can feel it either way) and radiotherapy is probably all done with I'm hopefully over the worst and everything will just get better from now on. My friends and family are all being so supportive and kind - even strangers on the internet who find this blog or my twitter etc are so generous. I've even received a few cards and itunes gift vouchers from some very kind family friends in Perth! (thank you if you read this!). I was talking to my GP the other day and she was talking about a patient they had who was a young man on exchange from china living here alone who was diagnosed with testicular cancer. He was afraid to tell his parents back home because he knew they couldn't afford to come to australia to take care of him or visit, so he dealt with it alone, in a foreign country with no family and all the expenses and travel managed himself... Hearing things like this I just feel so grateful to have the support of my amazing family and friends. The boy recovered fine, by the way. Apparently testicular cancer has a really great prognosis and his family now know.
Friday, October 21, 2011
Difficult week
Its been a difficult week, I was quite sick up until wednesday. We went in for chemo but I was much too ill so they gave me a few bags of fluids instead, and tried to get me a room. None was available though so we came back the next day instead. I was feeling better, but we had to wait for a doc to be available to review me and make sure I was up to it before I could start. So, we spent about 5 hours at hospital waiting, when he eventually arrived he said I'd have to be admitted to do it today, and i would be kept in over the weekend. I rejected this idea.
We went back again on friday, did the chemo, and went home. So far I'm feeling ok. Haven't really been sick a few days, and without the nastiest and most time consuming drug involved I'm coping ok so far. Very tired though and feeling irritable. So extra glad I'm not in hospital. That'd be a nightmare.
We go back in tomorrow morning for more fluids and a review. Hopefully I wont get much worse than I am now and wont need ot be admitted. Hopefully we've broken the cycle of nausea and I'l be able to get on with life and recovery in a few days time.
We went back again on friday, did the chemo, and went home. So far I'm feeling ok. Haven't really been sick a few days, and without the nastiest and most time consuming drug involved I'm coping ok so far. Very tired though and feeling irritable. So extra glad I'm not in hospital. That'd be a nightmare.
We go back in tomorrow morning for more fluids and a review. Hopefully I wont get much worse than I am now and wont need ot be admitted. Hopefully we've broken the cycle of nausea and I'l be able to get on with life and recovery in a few days time.
Friday, October 14, 2011
Radiotherapy
So radiotherapy- not a breeze. When describing the side effects they sort of just mumbled about how there might be some nausea, and it would be nothing to chemo.
Long story short, lots of nausea this week, and LOTs of intense fatigue. I am so very tired. We went in to see my oncologist yesterday and as soon as we'd seen him we were sent into the treatment for more fluids since I was getting quite dehydrated again. That really helped break the cycle of vomiting leading to dehydration, and dehydration leading to vomiting. I dont think I've been sick since actually, which is grand. I'm eating again, and drinking water and ice tea, though am yet to get out of bed today.
My hair (head, eyebrows and lashes) has begun falling out again. Its a tedious process, but at least I dont have to start plucking my eyebrows again! Though short eyelash hairs breaking off into your eyes is not a fun process. And you look even more noticeably sick with no eyelashes.
There is positive news though! My oncologist thinks that I will not wind up having all 14 rounds of chemo (presumably because of the response to the first pre-surgery 6). Also, the next round or two will not involve doxorubicin, which is the nastiest drug, and is the one that makes it tae three days. So next weeks round will now be one day in duration and hopefully somewhat less toxic.
Long story short, lots of nausea this week, and LOTs of intense fatigue. I am so very tired. We went in to see my oncologist yesterday and as soon as we'd seen him we were sent into the treatment for more fluids since I was getting quite dehydrated again. That really helped break the cycle of vomiting leading to dehydration, and dehydration leading to vomiting. I dont think I've been sick since actually, which is grand. I'm eating again, and drinking water and ice tea, though am yet to get out of bed today.
My hair (head, eyebrows and lashes) has begun falling out again. Its a tedious process, but at least I dont have to start plucking my eyebrows again! Though short eyelash hairs breaking off into your eyes is not a fun process. And you look even more noticeably sick with no eyelashes.
There is positive news though! My oncologist thinks that I will not wind up having all 14 rounds of chemo (presumably because of the response to the first pre-surgery 6). Also, the next round or two will not involve doxorubicin, which is the nastiest drug, and is the one that makes it tae three days. So next weeks round will now be one day in duration and hopefully somewhat less toxic.
Friday, October 7, 2011
Busy week
Its been a bit of a crazy week. After I got home from hospital last week I was still feeling pretty terrible, and actually got quite sick on... saturday? I think? Anyway, I couldn't keep anything down and we had the community nurses out a lot, and after three days of not really eating or drinking the nurses decided I needed a review and sent us off to TCH emergency room.
Mum and i spent about 16 hours in emergency. Not waiting to get in mind you- I have a special letter for post chemo which means they let me through immediately. We got in at about midnight monday night and they hooked me up to some fluids and ran various tests etc and we tried to sleep. I was going to be discharged in the morning, but the doctors changed over, and the new doctor came in while I was being sick and said "come on, there is no way I can let you go like this. You're not any better, you need to be here." So, I changed my mind. As it turned out i was a bit neutropenic (my white blood cells were low and I had very little immune system) so they moved me to a separate room in emergency to keep the sick people away from me a bit.
Since I was neutropenic it took some time to get me a room, as I had to have my own room in acute care on oncology. So eventually (mid afternoon I think) they found me a room and sent me up. I think mum and I slept most of the afternoon (the emergency bed and chairs are not the most comfortable). Later mum went home, and I had some visiters which was absolutely delightful.
After I'd had plenty of fluids the next day they sent me home. So this was wednesday. It turned out I was low on hemoglobin, which helped explain why i was still so so tired and breathless, so I was scheduled for some blood tests over the weekend to see if it came up.
On thursday we saw my oncologist, who said that it was not at all likely it would come up on its own, and that I'd need a transfusion next week. However I couldn't see the point in waiting if I was going to hav it anyway- waiting would just mean more days of feeling terrible, so i asked and I was scheduled in for the next day (friday). That afternoon I had my first radiotherapy appointment, which was really easy, and a bit futuristic actually. Lots of lasers. Not for zapping me with, but for lining me up so they can be exact about where they get the radiation. It only takes 10 minutes once I'm in there.
So yesterday morn mum and I headed over to hospital again and sat for 5 hours while they gave me a couple of bags of blood. Gross. Luckily there was a volunteer there doing hand and foot massages which was lovely. After the transfusion it was straight over to radiation for my second radiotherapy appointment. This one would have been even quicker than the first, except for one very annoying and chatty nurse who took much longer than was necessary to explain the skin care stuff to me. She took about 10 minutes, when all she needed to do was say "here is the cream. Put on the cream twice daily during treatment. Goodbye". She was trying to be helpful I suppose but just came off irritating and pushy.
Today I am feeling much better. I have normal energy and am going out with mum at some point and plan to do some walking. I've spent most of the last few weeks in a wheelchair or bed and am looking forward to getting some exercise, however slight.
Hope everyone is well x
Mum and i spent about 16 hours in emergency. Not waiting to get in mind you- I have a special letter for post chemo which means they let me through immediately. We got in at about midnight monday night and they hooked me up to some fluids and ran various tests etc and we tried to sleep. I was going to be discharged in the morning, but the doctors changed over, and the new doctor came in while I was being sick and said "come on, there is no way I can let you go like this. You're not any better, you need to be here." So, I changed my mind. As it turned out i was a bit neutropenic (my white blood cells were low and I had very little immune system) so they moved me to a separate room in emergency to keep the sick people away from me a bit.
Since I was neutropenic it took some time to get me a room, as I had to have my own room in acute care on oncology. So eventually (mid afternoon I think) they found me a room and sent me up. I think mum and I slept most of the afternoon (the emergency bed and chairs are not the most comfortable). Later mum went home, and I had some visiters which was absolutely delightful.
After I'd had plenty of fluids the next day they sent me home. So this was wednesday. It turned out I was low on hemoglobin, which helped explain why i was still so so tired and breathless, so I was scheduled for some blood tests over the weekend to see if it came up.
On thursday we saw my oncologist, who said that it was not at all likely it would come up on its own, and that I'd need a transfusion next week. However I couldn't see the point in waiting if I was going to hav it anyway- waiting would just mean more days of feeling terrible, so i asked and I was scheduled in for the next day (friday). That afternoon I had my first radiotherapy appointment, which was really easy, and a bit futuristic actually. Lots of lasers. Not for zapping me with, but for lining me up so they can be exact about where they get the radiation. It only takes 10 minutes once I'm in there.
So yesterday morn mum and I headed over to hospital again and sat for 5 hours while they gave me a couple of bags of blood. Gross. Luckily there was a volunteer there doing hand and foot massages which was lovely. After the transfusion it was straight over to radiation for my second radiotherapy appointment. This one would have been even quicker than the first, except for one very annoying and chatty nurse who took much longer than was necessary to explain the skin care stuff to me. She took about 10 minutes, when all she needed to do was say "here is the cream. Put on the cream twice daily during treatment. Goodbye". She was trying to be helpful I suppose but just came off irritating and pushy.
Today I am feeling much better. I have normal energy and am going out with mum at some point and plan to do some walking. I've spent most of the last few weeks in a wheelchair or bed and am looking forward to getting some exercise, however slight.
Hope everyone is well x
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