(no subject)
Summary of my physical/emotional/mental state, cancer wise. I thought I'd do one once a month, to track how things are going.
TREATMENTS
Currently I'm on Xeloda, a new generation chemotherapy that's adminstered orally with pills. Currently I take 2 pills am and 3 pm, in a three week cycle, with week 1 no pills, then week 2 and 3 taking the pills. This is working great so far, reducing my tumour markers by half.
I'm also taking fluid retention pills, anti inflammatories, cortico steroids and prescription antacids daily. These control the liver cancer symptoms, with the antiinflammatories controlling the back pain, plus Bonefos to build bone (to prevent breakages adn compression fractures).
In addition I have supplememts prescribed by my naturopath/GP: milk thistle for the liver, omega3 fatty acids and zinc for immune system, vitamin B6 for the hand/foot side effects of Xeloda, and ginseng for energy, plus henna for my feet, and lanolin for my hands and feet.
Physical.
Constant sense of weariness. Not tired, as in need to sleep. Just physically weary. Have you ever had a majorly horrible flu, where you can't move or get out of bed and even going to the toilet is a massive effort? Well, I've felt that too, back Before, and this weariness is that but times 10, and all day, and will never let up. To do anything at all, even get dressed, is a major effort. I shower and dress and need half an hour to feel okay again.
Headaches from time to time, nothing too severe or long lasting.
Dry mouth. This is awful. The chemo drugs attack all fast dividing cells, including hair, inside of nose and mouth, stomach, (hence the nausea and hair loss etc) but the ones I'm on are relatively mild. *Currently, on Xeloda. If you'd like to experience it, get some two day old bread, fill your mouth completely with it, then try to swallow. There are lotions for it but they make little difference. The only thing that gives me relief is fizzy water, soda or mineral. So I'm sipping it all day, which is good for me I guess but makes me go to the toilet a lot.
Hair thinning. I notice this but probably no one else does, because my hair was very thick to start with and now just looks like everyone else's hair. However I also have a creepy crawly feeling on the scalp which i do. not. like.
Cheeks. The cortico steroids I'm on which control much of the liver cancer symptoms (nausea, bloating, lack of appetite) cause a range of symptoms. One is swollen cheeks, and the other is hair on my face. Swollen cheeks I can do nothing about. My whole face shape has changed. The hair, which I've never had before, needs constant removal. Lots of fine blond ones on cheeks and chin, and some dark ones on moustache and chin. Not many thank goodness. I tried threading but it HURTS so now I do Nair on my cheeks, and tweeze the dark ones more regularly. But yuck.
Breathing. I have constant shortness of breath. Worse as the Xeloda cycle progresses. (Week 1, no chemo; week 2 and 3, twice a day pills.)
In the bad week I find I can't finish sentences properly. Let alone sing.
Skin. I have constant skin problems. My immune system is lowered by Xeloda and so any bug that took up residence in my body in my whole life has come back. I had one dose of thrush 20 years ago; just got another. I had a nasty run of boils a few years back, which I nuked with antibiotics and antibiotic soap/loofah daily ever since. At the end of two of the recent rounds of Xeloda: back again. One so bad it was Humungous and needed daily change of dressings. Yerk.
Also my skin is thinning everywhere. I'm easily bruised and the bruises stay for evah. The thinning skin means it's easy to open it. If there's a mozzie bite, for instance, and I scratch it, it opens to a wound and takes forever to heal. That's a big problem due to the ease of infection so I have to watch out and ensure everything is disinfected and covered with bandaid.
Stomach. Eating is mostly okay, thanks to the steroids, but I crave specific foods a lot. One day it's fruit, another it's crisp fried, another it's tomatos. I let my body tell me what to eat. I rarely get nauseous or get bowel problems though a lot of people on this drug do. Another yuck side effect of the liver cancer is acid reflux, so bad you can't eat or breathe much. So I take a daily strong prescription antacid and that controls it, mostly. I sometimes get bloating if I eat too much rich food. This happens much sooner than it did Before.
Taste. In week 3 of the chemo cycle my sense of taste diminishes, not to zero but to perhaps 30%. It takes 3-4 days in the off week for it to return.
Abdomen. This is horrible! The steroids have not made me put on weight now that the dose is adjusted. But my body shape has changed. More body fat on the abdomen sort of sticking out in front, where it used to be more distributed. This has caused about 15 bright purple stretch marks all over my stomach. Yay.
Eyes. My eyes are constantly a bit sore, a bit red, and occasionally a bit yellow, though that seemed to come and go with the two weeks I didn't have my milk thistle supplement with me in Vancouver. They're not yellow any more. That supplement must work well, I think. But I can't wear my contacts any more. I hate hate hate glasses, always have. They feel heavy and uncomfortable.
Legs. My knees are wobbly. This means I am always worried about losing my footing and have to concentrate on walking properly. I'm so scared of falling over and breaking something, because I have bone tumours that make my bones weaker, despite the bone building meds I'm on.
Calves. My calves are often tight and spasmy. This is partly due to being still so much but also because I have mets (tumours) all through my legs, and hte muscles contract over them to protect them. I have regular massages for this which helps, and stretches, but it keeps recurring anyway. I have the same thing in my arms, making my thumb and first finger contract so I know it's not just about the walking.
Feet. Oh man, the feet. Xeloda has major effects called "hand/foot syndrome". It affects mainly my feet so far, thank goodness. It's neuropathy. The soles of my feet tingle all the time. The balls and heel hurt sometimes to walk on. And the skin on the soles is peeling off. Not a little cracking like you might get, but just coming off in slices. This has caused my oncologist to lower my dose, and again for the next round, to see if we can still get the good results from the drug and manage the side effects.
For the feet, J puts henna paste on the soles. This cools the capillaries and prevents the bulk of the pain side effect (thanks to a study in Turkey, where they noticed few women there got the pain in the feet syndrome). I also put on pure lanolin cream on the soles to help prevent the cracking and peeling.
Swelling. Part of the liver cancer symptoms is swelling of the legs and arms, hands and feet. I've been getting this since around September but on and off. The last three weeks has been mostly on, and my feet and calves were so swollen I couldn't wear most of my shoes. My hands went up a full ring size. I'm now taking a daily fluid tablet (prescription) and that seems to be controlling it so far.
Nails. Just crap cuticles so far, but one side effect is your nails turning black or faling out. I hope that doesn't happen. I'm using a majorly rich cuticle cream and lanolin on my hands.
Hands. Tingling as per the feet, but not very much so I can still type and use my hands. Brittle nails and thin dry skin.
Muscles. The muscles throughout my body contract to cover up and protect the tumour-laden areas, which now is most of my bones and skull. I have a daily dose of Bonefos, which strengthens the bones. And I have a weekly 1.5 hour sports massage and fortnightly osteopath treatment, which manages the contractions, and in addition massages from friends and J in between. That makes a huge difference. Oh, and I take a daily anti inflammatory as well.
Sleep. Sleeping is fine because I have little pain. The only time I do is if my calves or feet cramp in the night, which is very rare. I get about 7 hours most days. And then often a snooze in the afternoon/early evening, about 15 mins. That's all I need for sleeping, the tiredness is not for sleep as I said.
Energy. This is the killer symptom. I just don't have the energy for things. If you haven't already read this article called Spoon Theory. It explains what I deal with very eloquently. I try to allocate my energy for the important stuff, like enjoying my days (or else what's the point of all of this?). Hanging out with friends, or doing things I like. Not housework or errands, wherever possible.
MENTAL
Mentally I am on half capacity. I could simply not do my ordinary work now. I don't make the connections I used to, i forget things, I can't calculate or organise things as well, and I just get confused. It's really horrible, Flowers for Algernon stuff because I know it won't get better. I can't type without making stupid mistakes, and to show you how stupid that is, one of my early jobs was as a proofreader, I was that accurate. I keep typing does, instead of dose. Some words I retype six times in an effort to spell it right.
In speaking I'm sometimes the same. The wrong word comes out, or the sentence is the wrong order, or I just say something nonsensical. Yes, you do that too sometimes. I used to as well, Before. This is different. It's constant. I retyped a word or two in every sentence in this post, sometimes more.
EMOTIONAL
I'm under a lot of stress, yes? It's as if my body is taking up so much of my resources that my emotions are a sad last. At 14, I was pretty temperamental, easy to anger, easy to cry. I'm an intense person. From then to now, I've gradually worked out how to manage those intensities for the comfort of others. Particularly being an ethnic Hungarian on my dad's side, in a primarily Anglo culture where evenness of temper is valued so highly. I did it too. I was renowned in my work as being able to handle the most difficult clients.
Now, the littlest thing will make me desperately unhappy, and I find myself crying ridiculously at things that I know in my head do NOT matter. I jsut can't control it. I'll get cranky with J for something stupid, that isn't important. I apologise, but sheesh, I don't like it. I don't like treating poeple that way, which is why I worked so hard to control myself Before, and I don't like the whiny sound of my voice, or anything about it.
I have gotten even blunter than I used to be. That's sometimes good. But sometimes, it's just offensive. I have no way to control that.. the resources to do it have gone. I used to have it. I know I COULD do it, if i weren't sick. But I am. All of that energy goes into just getting through the day.
It's still hard to think what I'm doing with my time, though that's easier now than it was. I have no goals other than perhaps to finish my memoirs. Doing courses seems meaningless. They mostly help you learn skills you'll use in future, and I don't have one. Is there a course I would find fun just in itself? Not really. I've done a lot of things in the past, like art, or dancing, singing lessons, and so on. I haven't the energy for that now. I can't concentrate enough either. But I've learned to take each day one at a time, and plan for something enjoyable if I can, even if it's just having lunch somewhere nice in the sun.
And under the surface, all the freaking time, is this wailing, this fear, the despair, the knowledge that I'm deeply hurting J by dying on him, the wish to live my live the way I'd expected to. The unfairness of it.. The loss. The humiliation and the deep sadness of dying this young. It just sucks.
Are there pluses? yes of course.
PLUSES and BLESSINGS
I have enough money to ride me out through my expected life span, thanks to my superannuation and income protection insurance. If you don't have some, get some. It means that neither me nor J has to work full time and we can focus on each other, enjoying our remaining time together, and doing some things like travel.
The wonderful discovery of people around me, who are generous with their time and their efforts and their willingness to help, and to think of things to delight me and make my remaining time worthwhile.
The equally wonderful discovery - no really, I"m serious - of people who have drifted out of my life in this period. It's good to know who your friends are. Some who've drifted away I'm sure feel fondly towards me, but in practical terms they are not friends. They are friendly acquaintances, if you know what i mean. One book I read described her friends in three circles: circle 1, family and closest friends. Circle 2, real friends. Circle 3, acquaintances who like you, or people you do things with (eg in a club or shared interest). And then everyone else.
I have discovered that many people I thought of as Circle 2 are closer to being Circle 1. People who I thought were 3 are 2. And Circle 3 has gathered a few who used to be 2 or even 1. Some who were circle 2 have moved to circle 3 by not contacting me. I have so little energy, I need others to call me rather than me reaching out. This is a major service my friends can do me, btw.
This editing of my friends is fantastic because I end up with only the best, most wonderful people around me. And accepting that some are circle 3, or in the "everyone else" category, is good because I don't have pointless lunches with people I don't particularly care about much. I don't have to make "let's catch up some time" type phone calls to anyone. And those who really like me, and I really like, get together. It doesn't have to be frequent, just good quality time. I'm spending spoons, so it has to be.
So, lol, if someone asks me "how are you", this is the long answer. Short answer: okay, considering. Low on energy but not in pain. Lots of annoying symptoms but nothing serious.
TREATMENTS
Currently I'm on Xeloda, a new generation chemotherapy that's adminstered orally with pills. Currently I take 2 pills am and 3 pm, in a three week cycle, with week 1 no pills, then week 2 and 3 taking the pills. This is working great so far, reducing my tumour markers by half.
I'm also taking fluid retention pills, anti inflammatories, cortico steroids and prescription antacids daily. These control the liver cancer symptoms, with the antiinflammatories controlling the back pain, plus Bonefos to build bone (to prevent breakages adn compression fractures).
In addition I have supplememts prescribed by my naturopath/GP: milk thistle for the liver, omega3 fatty acids and zinc for immune system, vitamin B6 for the hand/foot side effects of Xeloda, and ginseng for energy, plus henna for my feet, and lanolin for my hands and feet.
Physical.
Constant sense of weariness. Not tired, as in need to sleep. Just physically weary. Have you ever had a majorly horrible flu, where you can't move or get out of bed and even going to the toilet is a massive effort? Well, I've felt that too, back Before, and this weariness is that but times 10, and all day, and will never let up. To do anything at all, even get dressed, is a major effort. I shower and dress and need half an hour to feel okay again.
Headaches from time to time, nothing too severe or long lasting.
Dry mouth. This is awful. The chemo drugs attack all fast dividing cells, including hair, inside of nose and mouth, stomach, (hence the nausea and hair loss etc) but the ones I'm on are relatively mild. *Currently, on Xeloda. If you'd like to experience it, get some two day old bread, fill your mouth completely with it, then try to swallow. There are lotions for it but they make little difference. The only thing that gives me relief is fizzy water, soda or mineral. So I'm sipping it all day, which is good for me I guess but makes me go to the toilet a lot.
Hair thinning. I notice this but probably no one else does, because my hair was very thick to start with and now just looks like everyone else's hair. However I also have a creepy crawly feeling on the scalp which i do. not. like.
Cheeks. The cortico steroids I'm on which control much of the liver cancer symptoms (nausea, bloating, lack of appetite) cause a range of symptoms. One is swollen cheeks, and the other is hair on my face. Swollen cheeks I can do nothing about. My whole face shape has changed. The hair, which I've never had before, needs constant removal. Lots of fine blond ones on cheeks and chin, and some dark ones on moustache and chin. Not many thank goodness. I tried threading but it HURTS so now I do Nair on my cheeks, and tweeze the dark ones more regularly. But yuck.
Breathing. I have constant shortness of breath. Worse as the Xeloda cycle progresses. (Week 1, no chemo; week 2 and 3, twice a day pills.)
In the bad week I find I can't finish sentences properly. Let alone sing.
Skin. I have constant skin problems. My immune system is lowered by Xeloda and so any bug that took up residence in my body in my whole life has come back. I had one dose of thrush 20 years ago; just got another. I had a nasty run of boils a few years back, which I nuked with antibiotics and antibiotic soap/loofah daily ever since. At the end of two of the recent rounds of Xeloda: back again. One so bad it was Humungous and needed daily change of dressings. Yerk.
Also my skin is thinning everywhere. I'm easily bruised and the bruises stay for evah. The thinning skin means it's easy to open it. If there's a mozzie bite, for instance, and I scratch it, it opens to a wound and takes forever to heal. That's a big problem due to the ease of infection so I have to watch out and ensure everything is disinfected and covered with bandaid.
Stomach. Eating is mostly okay, thanks to the steroids, but I crave specific foods a lot. One day it's fruit, another it's crisp fried, another it's tomatos. I let my body tell me what to eat. I rarely get nauseous or get bowel problems though a lot of people on this drug do. Another yuck side effect of the liver cancer is acid reflux, so bad you can't eat or breathe much. So I take a daily strong prescription antacid and that controls it, mostly. I sometimes get bloating if I eat too much rich food. This happens much sooner than it did Before.
Taste. In week 3 of the chemo cycle my sense of taste diminishes, not to zero but to perhaps 30%. It takes 3-4 days in the off week for it to return.
Abdomen. This is horrible! The steroids have not made me put on weight now that the dose is adjusted. But my body shape has changed. More body fat on the abdomen sort of sticking out in front, where it used to be more distributed. This has caused about 15 bright purple stretch marks all over my stomach. Yay.
Eyes. My eyes are constantly a bit sore, a bit red, and occasionally a bit yellow, though that seemed to come and go with the two weeks I didn't have my milk thistle supplement with me in Vancouver. They're not yellow any more. That supplement must work well, I think. But I can't wear my contacts any more. I hate hate hate glasses, always have. They feel heavy and uncomfortable.
Legs. My knees are wobbly. This means I am always worried about losing my footing and have to concentrate on walking properly. I'm so scared of falling over and breaking something, because I have bone tumours that make my bones weaker, despite the bone building meds I'm on.
Calves. My calves are often tight and spasmy. This is partly due to being still so much but also because I have mets (tumours) all through my legs, and hte muscles contract over them to protect them. I have regular massages for this which helps, and stretches, but it keeps recurring anyway. I have the same thing in my arms, making my thumb and first finger contract so I know it's not just about the walking.
Feet. Oh man, the feet. Xeloda has major effects called "hand/foot syndrome". It affects mainly my feet so far, thank goodness. It's neuropathy. The soles of my feet tingle all the time. The balls and heel hurt sometimes to walk on. And the skin on the soles is peeling off. Not a little cracking like you might get, but just coming off in slices. This has caused my oncologist to lower my dose, and again for the next round, to see if we can still get the good results from the drug and manage the side effects.
For the feet, J puts henna paste on the soles. This cools the capillaries and prevents the bulk of the pain side effect (thanks to a study in Turkey, where they noticed few women there got the pain in the feet syndrome). I also put on pure lanolin cream on the soles to help prevent the cracking and peeling.
Swelling. Part of the liver cancer symptoms is swelling of the legs and arms, hands and feet. I've been getting this since around September but on and off. The last three weeks has been mostly on, and my feet and calves were so swollen I couldn't wear most of my shoes. My hands went up a full ring size. I'm now taking a daily fluid tablet (prescription) and that seems to be controlling it so far.
Nails. Just crap cuticles so far, but one side effect is your nails turning black or faling out. I hope that doesn't happen. I'm using a majorly rich cuticle cream and lanolin on my hands.
Hands. Tingling as per the feet, but not very much so I can still type and use my hands. Brittle nails and thin dry skin.
Muscles. The muscles throughout my body contract to cover up and protect the tumour-laden areas, which now is most of my bones and skull. I have a daily dose of Bonefos, which strengthens the bones. And I have a weekly 1.5 hour sports massage and fortnightly osteopath treatment, which manages the contractions, and in addition massages from friends and J in between. That makes a huge difference. Oh, and I take a daily anti inflammatory as well.
Sleep. Sleeping is fine because I have little pain. The only time I do is if my calves or feet cramp in the night, which is very rare. I get about 7 hours most days. And then often a snooze in the afternoon/early evening, about 15 mins. That's all I need for sleeping, the tiredness is not for sleep as I said.
Energy. This is the killer symptom. I just don't have the energy for things. If you haven't already read this article called Spoon Theory. It explains what I deal with very eloquently. I try to allocate my energy for the important stuff, like enjoying my days (or else what's the point of all of this?). Hanging out with friends, or doing things I like. Not housework or errands, wherever possible.
MENTAL
Mentally I am on half capacity. I could simply not do my ordinary work now. I don't make the connections I used to, i forget things, I can't calculate or organise things as well, and I just get confused. It's really horrible, Flowers for Algernon stuff because I know it won't get better. I can't type without making stupid mistakes, and to show you how stupid that is, one of my early jobs was as a proofreader, I was that accurate. I keep typing does, instead of dose. Some words I retype six times in an effort to spell it right.
In speaking I'm sometimes the same. The wrong word comes out, or the sentence is the wrong order, or I just say something nonsensical. Yes, you do that too sometimes. I used to as well, Before. This is different. It's constant. I retyped a word or two in every sentence in this post, sometimes more.
EMOTIONAL
I'm under a lot of stress, yes? It's as if my body is taking up so much of my resources that my emotions are a sad last. At 14, I was pretty temperamental, easy to anger, easy to cry. I'm an intense person. From then to now, I've gradually worked out how to manage those intensities for the comfort of others. Particularly being an ethnic Hungarian on my dad's side, in a primarily Anglo culture where evenness of temper is valued so highly. I did it too. I was renowned in my work as being able to handle the most difficult clients.
Now, the littlest thing will make me desperately unhappy, and I find myself crying ridiculously at things that I know in my head do NOT matter. I jsut can't control it. I'll get cranky with J for something stupid, that isn't important. I apologise, but sheesh, I don't like it. I don't like treating poeple that way, which is why I worked so hard to control myself Before, and I don't like the whiny sound of my voice, or anything about it.
I have gotten even blunter than I used to be. That's sometimes good. But sometimes, it's just offensive. I have no way to control that.. the resources to do it have gone. I used to have it. I know I COULD do it, if i weren't sick. But I am. All of that energy goes into just getting through the day.
It's still hard to think what I'm doing with my time, though that's easier now than it was. I have no goals other than perhaps to finish my memoirs. Doing courses seems meaningless. They mostly help you learn skills you'll use in future, and I don't have one. Is there a course I would find fun just in itself? Not really. I've done a lot of things in the past, like art, or dancing, singing lessons, and so on. I haven't the energy for that now. I can't concentrate enough either. But I've learned to take each day one at a time, and plan for something enjoyable if I can, even if it's just having lunch somewhere nice in the sun.
And under the surface, all the freaking time, is this wailing, this fear, the despair, the knowledge that I'm deeply hurting J by dying on him, the wish to live my live the way I'd expected to. The unfairness of it.. The loss. The humiliation and the deep sadness of dying this young. It just sucks.
Are there pluses? yes of course.
PLUSES and BLESSINGS
I have enough money to ride me out through my expected life span, thanks to my superannuation and income protection insurance. If you don't have some, get some. It means that neither me nor J has to work full time and we can focus on each other, enjoying our remaining time together, and doing some things like travel.
The wonderful discovery of people around me, who are generous with their time and their efforts and their willingness to help, and to think of things to delight me and make my remaining time worthwhile.
The equally wonderful discovery - no really, I"m serious - of people who have drifted out of my life in this period. It's good to know who your friends are. Some who've drifted away I'm sure feel fondly towards me, but in practical terms they are not friends. They are friendly acquaintances, if you know what i mean. One book I read described her friends in three circles: circle 1, family and closest friends. Circle 2, real friends. Circle 3, acquaintances who like you, or people you do things with (eg in a club or shared interest). And then everyone else.
I have discovered that many people I thought of as Circle 2 are closer to being Circle 1. People who I thought were 3 are 2. And Circle 3 has gathered a few who used to be 2 or even 1. Some who were circle 2 have moved to circle 3 by not contacting me. I have so little energy, I need others to call me rather than me reaching out. This is a major service my friends can do me, btw.
This editing of my friends is fantastic because I end up with only the best, most wonderful people around me. And accepting that some are circle 3, or in the "everyone else" category, is good because I don't have pointless lunches with people I don't particularly care about much. I don't have to make "let's catch up some time" type phone calls to anyone. And those who really like me, and I really like, get together. It doesn't have to be frequent, just good quality time. I'm spending spoons, so it has to be.
So, lol, if someone asks me "how are you", this is the long answer. Short answer: okay, considering. Low on energy but not in pain. Lots of annoying symptoms but nothing serious.