This afternoon at the Haven I was putting my coat on to leave when I realised something was poking me in the side of my neck........it was an acupuncture needle that accidentally got left in......whoops.
Today I had 2 needles in the tops of my feet, 2 in my lower legs, 1 on my inner left wrist, 1 in each shoulder, 2 around my collarbones, 1 either side of my nose and 1 on the top of my head. Freaky, eh? I try mostly not to think too much about blurby energy routes etc. but I have felt some funny sensations - jumping nerves, tingling and then one moment of panicky-ness. Which I thought was to do with the fact I had needles either side of my nostrils but in acupuncture terms is something more to do with having a needle in your wrist on your heart-kidney line/link/thing. I, apparently, am a heart/heat/fire person and my problems with hot flushes/lymph swelling/panic are to do with my heart/heat being too active and it needs to connect more with my dehydrated kidneys......
This is why I don't listen very much to this. But, he oddly did make me feel better, feel a bit more connected today. So, I'll take it - heart and kidneys? Are you listening? Kindly connect. Sharpish.
It does leave me feeling stiffish and tired.....
Showing posts with label 'Hots'. Show all posts
Showing posts with label 'Hots'. Show all posts
Friday, February 06, 2009
Tuesday, November 18, 2008
I try, I really do!
Dumbo here went and bought a bunch of yarn for Christmas knitting yesterday and misremembered the U.K. equivalent of worsted yarn. I know have an excess of DK rather than Aran.
Moral of the story?
Don't yarn shop on impulse when you accidentally pass a yarn selling shop. When will I learn to bloody well write down things and not rely on memory - which I know to be rubbish. I should have restricted myself to the bamboo dpns which I knew I needed in 3mm for plane knitting and left it at that.....
::sigh::
I guess I'll be ransacking Ravelry for DK neck warmer patterns now.....if you've any ideas then flag 'em up for me please!
Moving on.
I am not one of Pavlov's dogs. (obviously)
Arimidex=worsening hot flushes - especially *sugar* connected ones.
But, I don't learn. You'd think that if you ate something with sugar in and then had an evil hot flush a few minutes later you'd start to associate them with the sugary things and not want to eat them any more. Nope, not here, doesn't work. I crave sugar, eventually cave and eat something sweet, have hot flush, throw open windows or pull off jumpers or remove socks or all of the aforementioned, curse myself for eating sugar. Rinse and repeat.
Utterly dumb.
Of course, it's pretty hard not to have any sugar but I hardly eat fruit; *definitely* no fruit juices - they're pure sugar; I fall down over cake/biscuits and I go through phases of craving coke (during which I loathe myself). But most of the time - water only. Really. Just water. By the pint.
If I'm on my own I probably won't eat hot food either. Eating anything will bring on hot flushes - so I put off eating until I'm really hungry, at which point I'm really hungry so I eat anything quick and easy. Hello biscuits. ::sigh::
I'm guessing the homoeopath may increase my Belladonna dosage in a couple of weeks time. Which helps. But it doesn't cure it all. Which is what I want. I'd like to sleep on my nice 100% cotton sheets as opposed to the poly-cotton mix ones which dry out more quickly when you're sweaty at night. I'd quite like not to be the person in my office still sitting there in t-shirts whilst everyone else is in sweaters.
::sigh::
End of whine.
Drip.
Moral of the story?
Don't yarn shop on impulse when you accidentally pass a yarn selling shop. When will I learn to bloody well write down things and not rely on memory - which I know to be rubbish. I should have restricted myself to the bamboo dpns which I knew I needed in 3mm for plane knitting and left it at that.....
::sigh::
I guess I'll be ransacking Ravelry for DK neck warmer patterns now.....if you've any ideas then flag 'em up for me please!
Moving on.
I am not one of Pavlov's dogs. (obviously)
Arimidex=worsening hot flushes - especially *sugar* connected ones.
But, I don't learn. You'd think that if you ate something with sugar in and then had an evil hot flush a few minutes later you'd start to associate them with the sugary things and not want to eat them any more. Nope, not here, doesn't work. I crave sugar, eventually cave and eat something sweet, have hot flush, throw open windows or pull off jumpers or remove socks or all of the aforementioned, curse myself for eating sugar. Rinse and repeat.
Utterly dumb.
Of course, it's pretty hard not to have any sugar but I hardly eat fruit; *definitely* no fruit juices - they're pure sugar; I fall down over cake/biscuits and I go through phases of craving coke (during which I loathe myself). But most of the time - water only. Really. Just water. By the pint.
If I'm on my own I probably won't eat hot food either. Eating anything will bring on hot flushes - so I put off eating until I'm really hungry, at which point I'm really hungry so I eat anything quick and easy. Hello biscuits. ::sigh::
I'm guessing the homoeopath may increase my Belladonna dosage in a couple of weeks time. Which helps. But it doesn't cure it all. Which is what I want. I'd like to sleep on my nice 100% cotton sheets as opposed to the poly-cotton mix ones which dry out more quickly when you're sweaty at night. I'd quite like not to be the person in my office still sitting there in t-shirts whilst everyone else is in sweaters.
::sigh::
End of whine.
Drip.
Saturday, November 01, 2008
Na Blo Po Mo. Again. Again.
It's that NaBloPoMo time of year again - my heart isn't in it this year so don't be surprised if I vanish midway through.....
Eloquence feels like it's ebbing away. Along with my brain.
Apparently I managed to go to Northampton without my Arimidex last weekend - but didn't notice that I hadn't been taking them for three days....in fact, I thought I *had* taken them at least once and then misplaced the pills but when I got back to London they were here; so I obviously hadn't. On the plus side I had a few days of hardly any hot flushes; on the minus side my axilla and shoulder started to ache again which I think is due to some swelling because of a few nodes in there. I'm sure it'll settle down again now I've started taking them again. I just hope the aching back settles down too - it's been nearly two weeks and it's not as bad as it was but it's not 100% either. Gee, I love being a crock! It's such great fun! (NOT)
Tomorrow, tune in to see if I've blown my up with methylated spirits and a trangia.....
Eloquence feels like it's ebbing away. Along with my brain.
Apparently I managed to go to Northampton without my Arimidex last weekend - but didn't notice that I hadn't been taking them for three days....in fact, I thought I *had* taken them at least once and then misplaced the pills but when I got back to London they were here; so I obviously hadn't. On the plus side I had a few days of hardly any hot flushes; on the minus side my axilla and shoulder started to ache again which I think is due to some swelling because of a few nodes in there. I'm sure it'll settle down again now I've started taking them again. I just hope the aching back settles down too - it's been nearly two weeks and it's not as bad as it was but it's not 100% either. Gee, I love being a crock! It's such great fun! (NOT)
Tomorrow, tune in to see if I've blown my up with methylated spirits and a trangia.....
Saturday, July 26, 2008
Melting
This holiday is temporarily interrupted by the desert from heaven.
Yeah, you're thinking - it's a desert - sounds good.
No no my friends, is *stupendously* delicious.
The crust round the outside it crisp and not too sweet; the peaches and apricots are hot and mushily soft but a little tart in flavour; the ice-cream is sweet and smooth and cold; add those all together in one mouthful......perfection. Your taste buds can't keep up!
And this rather extravagant dinner was due to the fact that it has been obscenely hot in York - despite the weather report saying it was going to be showery today - so we found the first damn restaurant with air conditioning and didn't even think about the price. So, thank you daddy for the money you gave me for my holidays - it bought me two hours in the cool and the perfectist desert ever......
Peach and Apricot Charlotte with honey ice-cream
Yeah, you're thinking - it's a desert - sounds good.
No no my friends, is *stupendously* delicious.
The crust round the outside it crisp and not too sweet; the peaches and apricots are hot and mushily soft but a little tart in flavour; the ice-cream is sweet and smooth and cold; add those all together in one mouthful......perfection. Your taste buds can't keep up!
And this rather extravagant dinner was due to the fact that it has been obscenely hot in York - despite the weather report saying it was going to be showery today - so we found the first damn restaurant with air conditioning and didn't even think about the price. So, thank you daddy for the money you gave me for my holidays - it bought me two hours in the cool and the perfectist desert ever......
Thursday, December 13, 2007
Long time, passing
::Sigh::
Where did I go? I guess December has gotten the better of me.
What have I been up to?
Well, I had my appointment at the Royal London Homoeopathic Hospital with Dr. Kassab - who was very nice. Her office was filled with plants which was nice - green and leafy. She was very kind and it was so fantastic to talk to someone who really acknowledged how much of a problem the hot flushes are - and then went on to say that she was pretty sure she could do something to help. Which is such a difference to the usual 'well, it's crap but we can't do much about it'. I'm not saying that other drs. etc have been unkind or unsympathetic; it's just that, generally, they can't offer much help with it. Plus, it's always considered as a *side-effect* rather than a problem in its own right.
So, I cried (as usual) and explained everything that had happened to me (which I hate doing - well, the explaining the whole when it first started, how I found it and all that stuff.)
It was really quite fascinating discussing it with her - she asked lots of questions about the emotional effect and how I felt when it happened and before it happened and what it felt like. I learnt some interesting things about them through this - for example, the hot flushes make me feel claustrophobic - having to have windows open at night; feeling compulsions to take off as many clothes as I can when they happen; panicking and feeling trapped when they happen.
So I came away with an initial prescription for 'Argent Nit. ' and another for 'Glonoine' if the other isn't doing much after a month. So it's been just over a week and I'm still waiting to see what sort of effect the Arg. Nit. is having......I'm not feeling like it's helping much yet but I'll keep on giving it a go.
One of my few working veins has given up the ghost so we had to have several goes at getting the cannula in on Friday ::shudder:: I never thought I'd say this, but; I miss my portocath.....I keep joking that I'll bring in my port and they can put it back in. But I was down to 2 or 3 functioning and easily found veins in my one usable arm and if we keep going with the IV pamidronate then I'm going to run out of veins!! Plus, who knows what they'll have to give me in the future. Eventually, if the Xeloda stops working, then I may need some other drugs. So, in the long run, it may be an investment to have the portocath put back in.....I guess I'll cross that bridge in due course.
So, then on Saturday morning (of course, these things never happen on Mondays...) I noticed that a mole on my leg was looking odd and scabby and darker. So, of course, I freaked out; convinced that it was skin cancer and it had spread and perhaps this was the initial cause of it all (irrational, much?) and so on. Oh, and that the 3 cysts I have in various places weren't cysts and I should have mentioned the new one instead of telling myself it was just another cyst etc. Argh, dying, end of world, man the lifeboats, plan the funeral, finish the knitting etc.
Poor Dear Other tried to reassure me - reminding me that the CT scan would have shown up other cancer spots, that even if it was abnormal it didn't mean it was cancerous, that it was small. And it was a case of me meeting logic and going 'lalalalalal cannot understand this logic-thing, s'cuse me, too much dying to do!' Poor, poor, Dear Other - he looked so sad and said he felt so bad about not to be able to make me feel better. (Bear in mind I'd thrown in a healthy dose of 'I'm so stupid; it's all my fault; I should have done this and that and the other; bad, bad me, blah, blah, blah') Well, he did make me feel better; but I felt pretty crap to begin with so it was better on a relative scale. So, after a weekend of 'argh!' and great fear, on Monday morning I rang my breast care nurse (well, the new one - the one who knows me best is on maternity leave - the nerve of it!) who helpfully said 'hmm, don't think it's to do with the Xeloda - go and see your GP. Bye!' Not quite as much cossetting and reassuring as I'd hoped for. So, I rang my GP's surgery and asked for an appointment that day - none to be had (of course) so I asked for my GP to ring me and headed off to Shiatsu where I spent at least half the session crying and wailing before we even started - but she was very nice and understanding about my neuroticness and was even kind enough to say that she understood my point of view about feeling that the cancer was my 'fault' because my body is me. By the time I got home it was getting on for 5pm and my GP *still had not rung me* and I was cross but decided I'd just ring for an appointment early the following morning but just as I was bad-mouthing him, he rang (at 4 minutes before 6pm....) and said 'it's about a mole?' and I said 'yes, it sounds pathetic, I know.' and he was kind enough to say 'no, no - do you want me to look at it?' (er, no - why would I want that? Please just use your psychic powers to divine it's status and we shan't have to bother with all this appointments business.....) Ooh, I am bitchy - horribly so, considering that he told me to come and see him the following day - a miracle because I can't usually get an appointment with him at all. But he squeezed his schedule or something and fitted me in.
So I showed it to him, along with a bunch of other ones and my cysts, saying 'what about this one? Ok, this one? Can I just show you this?' and he was exceedingly patient and looked at them all and told me they were all *FINE*. (YAY!) But he said that if I came back in a month then he'd look again and if I wanted to have it removed then he'd take it out and send it to be tested; so I probably will have it taken off - just so I stop peering at it and poking it (which was probably why it was red in the first place - dumbo.) Then he asked if there was anything else he could do for me - which I always think if very nice but very pointless; because what can he do? I was torn between saying 'yes, make it all go away' and 'yes, come round for tea - that will make me feel better!' But I didn't say either - well, I might have said the former in a not so facetious way. But I did whine a bit about not sleeping and he gave me a prescription for some Zopiclone (why do half my pills start with a Z or an X???) - just a small number, not a long term thing but he said it might help so I can make the most of my time with my family over Christmas. So, I went home a very relieved bunny and collapsed in a heap.
Remind me to tell you tomorrow that I left my glasses at Shiatsu, I'm getting a cold, I'm collecting preventative antibiotics and to show you the *bee-you-ti-ful* lace stole I was given as a Christmas present (which I've worn and stroked every day since I got it); plus my dithering over what to make with Pocketina's hand spun yarn (I'm currently too scared to knit it in case it all goes horribly wrong and I spoil it - which will make me cry, more, lots.) Plus, plus, my envy over the meeting and fah-bulous new creations of Laurie and Rebel.
The end.
Whee! Are you still reading? Or have you slumped over in a heap of overwhelmed-ness?
Where did I go? I guess December has gotten the better of me.
What have I been up to?
Well, I had my appointment at the Royal London Homoeopathic Hospital with Dr. Kassab - who was very nice. Her office was filled with plants which was nice - green and leafy. She was very kind and it was so fantastic to talk to someone who really acknowledged how much of a problem the hot flushes are - and then went on to say that she was pretty sure she could do something to help. Which is such a difference to the usual 'well, it's crap but we can't do much about it'. I'm not saying that other drs. etc have been unkind or unsympathetic; it's just that, generally, they can't offer much help with it. Plus, it's always considered as a *side-effect* rather than a problem in its own right.
So, I cried (as usual) and explained everything that had happened to me (which I hate doing - well, the explaining the whole when it first started, how I found it and all that stuff.)
It was really quite fascinating discussing it with her - she asked lots of questions about the emotional effect and how I felt when it happened and before it happened and what it felt like. I learnt some interesting things about them through this - for example, the hot flushes make me feel claustrophobic - having to have windows open at night; feeling compulsions to take off as many clothes as I can when they happen; panicking and feeling trapped when they happen.
So I came away with an initial prescription for 'Argent Nit. ' and another for 'Glonoine' if the other isn't doing much after a month. So it's been just over a week and I'm still waiting to see what sort of effect the Arg. Nit. is having......I'm not feeling like it's helping much yet but I'll keep on giving it a go.
One of my few working veins has given up the ghost so we had to have several goes at getting the cannula in on Friday ::shudder:: I never thought I'd say this, but; I miss my portocath.....I keep joking that I'll bring in my port and they can put it back in. But I was down to 2 or 3 functioning and easily found veins in my one usable arm and if we keep going with the IV pamidronate then I'm going to run out of veins!! Plus, who knows what they'll have to give me in the future. Eventually, if the Xeloda stops working, then I may need some other drugs. So, in the long run, it may be an investment to have the portocath put back in.....I guess I'll cross that bridge in due course.
So, then on Saturday morning (of course, these things never happen on Mondays...) I noticed that a mole on my leg was looking odd and scabby and darker. So, of course, I freaked out; convinced that it was skin cancer and it had spread and perhaps this was the initial cause of it all (irrational, much?) and so on. Oh, and that the 3 cysts I have in various places weren't cysts and I should have mentioned the new one instead of telling myself it was just another cyst etc. Argh, dying, end of world, man the lifeboats, plan the funeral, finish the knitting etc.
Poor Dear Other tried to reassure me - reminding me that the CT scan would have shown up other cancer spots, that even if it was abnormal it didn't mean it was cancerous, that it was small. And it was a case of me meeting logic and going 'lalalalalal cannot understand this logic-thing, s'cuse me, too much dying to do!' Poor, poor, Dear Other - he looked so sad and said he felt so bad about not to be able to make me feel better. (Bear in mind I'd thrown in a healthy dose of 'I'm so stupid; it's all my fault; I should have done this and that and the other; bad, bad me, blah, blah, blah') Well, he did make me feel better; but I felt pretty crap to begin with so it was better on a relative scale. So, after a weekend of 'argh!' and great fear, on Monday morning I rang my breast care nurse (well, the new one - the one who knows me best is on maternity leave - the nerve of it!) who helpfully said 'hmm, don't think it's to do with the Xeloda - go and see your GP. Bye!' Not quite as much cossetting and reassuring as I'd hoped for. So, I rang my GP's surgery and asked for an appointment that day - none to be had (of course) so I asked for my GP to ring me and headed off to Shiatsu where I spent at least half the session crying and wailing before we even started - but she was very nice and understanding about my neuroticness and was even kind enough to say that she understood my point of view about feeling that the cancer was my 'fault' because my body is me. By the time I got home it was getting on for 5pm and my GP *still had not rung me* and I was cross but decided I'd just ring for an appointment early the following morning but just as I was bad-mouthing him, he rang (at 4 minutes before 6pm....) and said 'it's about a mole?' and I said 'yes, it sounds pathetic, I know.' and he was kind enough to say 'no, no - do you want me to look at it?' (er, no - why would I want that? Please just use your psychic powers to divine it's status and we shan't have to bother with all this appointments business.....) Ooh, I am bitchy - horribly so, considering that he told me to come and see him the following day - a miracle because I can't usually get an appointment with him at all. But he squeezed his schedule or something and fitted me in.
So I showed it to him, along with a bunch of other ones and my cysts, saying 'what about this one? Ok, this one? Can I just show you this?' and he was exceedingly patient and looked at them all and told me they were all *FINE*. (YAY!) But he said that if I came back in a month then he'd look again and if I wanted to have it removed then he'd take it out and send it to be tested; so I probably will have it taken off - just so I stop peering at it and poking it (which was probably why it was red in the first place - dumbo.) Then he asked if there was anything else he could do for me - which I always think if very nice but very pointless; because what can he do? I was torn between saying 'yes, make it all go away' and 'yes, come round for tea - that will make me feel better!' But I didn't say either - well, I might have said the former in a not so facetious way. But I did whine a bit about not sleeping and he gave me a prescription for some Zopiclone (why do half my pills start with a Z or an X???) - just a small number, not a long term thing but he said it might help so I can make the most of my time with my family over Christmas. So, I went home a very relieved bunny and collapsed in a heap.
Remind me to tell you tomorrow that I left my glasses at Shiatsu, I'm getting a cold, I'm collecting preventative antibiotics and to show you the *bee-you-ti-ful* lace stole I was given as a Christmas present (which I've worn and stroked every day since I got it); plus my dithering over what to make with Pocketina's hand spun yarn (I'm currently too scared to knit it in case it all goes horribly wrong and I spoil it - which will make me cry, more, lots.) Plus, plus, my envy over the meeting and fah-bulous new creations of Laurie and Rebel.
The end.
Whee! Are you still reading? Or have you slumped over in a heap of overwhelmed-ness?
Saturday, November 10, 2007
What's the alternative?
Well, I whined a great deal about being 'too hot' last night and the result was that the referral letter to the Royal London Homeopathic Hospital's Complementary Cancer Care Programme finally arrived. How's that for a result?!
4th December I will meet Dr Sosie Kassab; or, at least, one of her team. She's been recommended (and I've been referred by) my oncologist - and she's not one to suffer fools gladly. Any praise or recommendation from her I'll grab with both hands.
I'm also going back to the London Haven; partly because I need to something to get up for on most days and partly because I guess I need a bit more TLC. Maybe I can sleep whilst I'm there ;)
This takes us into the tricky area of do I really believe these things work - I think there's a lot of evidence (medical) for the potential effectiveness of homeopathy, so I shall be interested to see what happens there. Of course, I'm also at a point of such desperation with it that if someone told me to stand on one leg for half an hour a day and then turn around three times and touch the ground whilst saying 'I believe in cancer-fairies' - I'd do it. I actually don't care what it is if it works. Well, within reason. I admit, I'm somewhat more sceptical about things like Reflexology and Reiki (to name two that I actually have experience of). I don't really see how they work or why they should. In both cases I enjoyed them - an hour to just relax and lay somewhere whilst someone is sympathetic about what you're going through. Plus with the reflexology - a foot massage. What's not good about that? Do I believe that that the foot massage moves the toxins out of other bits of my body? I dunno - I don't understand how it would but maybe I just don't know enough about it.....
The reiki - that was odd - I think I just snoozed my way through it really. I did have an odd experience of a sudden start in my body and a white light even when my eyes were closed. But I think that might just have been me falling asleep......
The one thing I really do need to avoid are the 'food facists' - I do believe that a healthy diet is important - and I'm pretty good when I'm not feeling too depressed; but I won't be lectured about 'acid ash' and the 'deadly dairy'. Perhaps that work for some people but it just makes me feel miserable, useless (because I can't stick to that sort of diet) and pissed off. Frankly, there's not much point saving this life if I'm going to spend it feeling miserable and guilty about food.
So there, now!
I'm actually loathe to ask you any questions about this for fear of grave recriminations - but, share your thoughts or experiences if you're so minded......
4th December I will meet Dr Sosie Kassab; or, at least, one of her team. She's been recommended (and I've been referred by) my oncologist - and she's not one to suffer fools gladly. Any praise or recommendation from her I'll grab with both hands.
I'm also going back to the London Haven; partly because I need to something to get up for on most days and partly because I guess I need a bit more TLC. Maybe I can sleep whilst I'm there ;)
This takes us into the tricky area of do I really believe these things work - I think there's a lot of evidence (medical) for the potential effectiveness of homeopathy, so I shall be interested to see what happens there. Of course, I'm also at a point of such desperation with it that if someone told me to stand on one leg for half an hour a day and then turn around three times and touch the ground whilst saying 'I believe in cancer-fairies' - I'd do it. I actually don't care what it is if it works. Well, within reason. I admit, I'm somewhat more sceptical about things like Reflexology and Reiki (to name two that I actually have experience of). I don't really see how they work or why they should. In both cases I enjoyed them - an hour to just relax and lay somewhere whilst someone is sympathetic about what you're going through. Plus with the reflexology - a foot massage. What's not good about that? Do I believe that that the foot massage moves the toxins out of other bits of my body? I dunno - I don't understand how it would but maybe I just don't know enough about it.....
The reiki - that was odd - I think I just snoozed my way through it really. I did have an odd experience of a sudden start in my body and a white light even when my eyes were closed. But I think that might just have been me falling asleep......
The one thing I really do need to avoid are the 'food facists' - I do believe that a healthy diet is important - and I'm pretty good when I'm not feeling too depressed; but I won't be lectured about 'acid ash' and the 'deadly dairy'. Perhaps that work for some people but it just makes me feel miserable, useless (because I can't stick to that sort of diet) and pissed off. Frankly, there's not much point saving this life if I'm going to spend it feeling miserable and guilty about food.
So there, now!
I'm actually loathe to ask you any questions about this for fear of grave recriminations - but, share your thoughts or experiences if you're so minded......
Friday, November 09, 2007
Drip drop
My neck is sweating. Whose neck sweats? I am so gutted about having had to start the Zoladex again. I was so happy when I thought I'd finished in August. That was the only way I got through the summer - by just saying to myself 'only a few more months - you don't have to do any more summers like this'. And it wasn't even a particularly hot summer.
But then the lump reared its ugly head in September and I had to start them again. And the hot flushes are worse again. So bad, that today I actually caught myself thinking that it would be better to die that go through another summer with hot flushes.
Which is ridiculous. I thought immediately - 'that's ridiculous - it so would not be'. I think I sound melodramatic when I say to people that they're going to drive me into a gibbering wreck of a woman; but I really, actually do think that. I really, actually think that one day I'm just going to sink to the ground and bang my head on it over and over again; or just start muttering nonsense. It sounds so pathetic - 'I'm hot' - I'm sure people think ' how bad can it be - it's just feeling too hot' but by the time I haven't slept through the night for *two years* and I continually feel sweaty and sticky and disgusting - it's amazing I can still bear to live with myself. It's amazing that I can string even two words together. I feel like a disgusting creature who no-one in their right mind would want to be near and then combine that with hating the way I look physically and it's amazing I still exist.
Sleep - I used to put my head on my pillow, fall asleep and not wake up until morning. Or if I did wake in the night, then I'd look at the time, roll over and fall asleep again. Now, I can sleep for a max of 4 hours straight on a good night - then I wake up, sticking to my sheets and can still be awake 2 hours later, tossing and turning, going hot and then cold and then hot, repeat ad nauseam. If I get back to sleep then it's usually for no more than an hour at a time. I've been given Lorazepam - which doesn't make me fall asleep; it's a muscle relaxant - so I lay there, relaxed, but hot and awake. Nice.
The best night's sleep I've had in the last year was the night before last when I finally resorted to codeine to get rid of my headache. I fell asleep pronto (I usually lie awake for up to an hour listening to Michael Palin or Garrison Keillor) and then the codeine made me so drowsy that when I woke up, I managed to sleep again - for nearly 12 hours. *12 hours*. I cannot even recall when I last slept that long. It wasn't the best quality sleep and I woke up feeling groggy but, by gum, it was still pretty damn good. Shame I can't just knock myself out of codeine every night. (No, I am not stupid, I shan't be doing that.)
Exciting needle sticking and pamidronate drip today. Thankfully my (fave) nurse in the chemosuite knows how to get into my veins and all was done without unecessary bruising.
I would take a picture to demonstrate the lack of success in the CT department earlier this week but the camera wants new batteries first and I can't find them.
I think I've run out of steam now - but I have written quite a lot this evening - I think wearing my Fussy shirt today has helped the word-stream....
But then the lump reared its ugly head in September and I had to start them again. And the hot flushes are worse again. So bad, that today I actually caught myself thinking that it would be better to die that go through another summer with hot flushes.
Which is ridiculous. I thought immediately - 'that's ridiculous - it so would not be'. I think I sound melodramatic when I say to people that they're going to drive me into a gibbering wreck of a woman; but I really, actually do think that. I really, actually think that one day I'm just going to sink to the ground and bang my head on it over and over again; or just start muttering nonsense. It sounds so pathetic - 'I'm hot' - I'm sure people think ' how bad can it be - it's just feeling too hot' but by the time I haven't slept through the night for *two years* and I continually feel sweaty and sticky and disgusting - it's amazing I can still bear to live with myself. It's amazing that I can string even two words together. I feel like a disgusting creature who no-one in their right mind would want to be near and then combine that with hating the way I look physically and it's amazing I still exist.
Sleep - I used to put my head on my pillow, fall asleep and not wake up until morning. Or if I did wake in the night, then I'd look at the time, roll over and fall asleep again. Now, I can sleep for a max of 4 hours straight on a good night - then I wake up, sticking to my sheets and can still be awake 2 hours later, tossing and turning, going hot and then cold and then hot, repeat ad nauseam. If I get back to sleep then it's usually for no more than an hour at a time. I've been given Lorazepam - which doesn't make me fall asleep; it's a muscle relaxant - so I lay there, relaxed, but hot and awake. Nice.
The best night's sleep I've had in the last year was the night before last when I finally resorted to codeine to get rid of my headache. I fell asleep pronto (I usually lie awake for up to an hour listening to Michael Palin or Garrison Keillor) and then the codeine made me so drowsy that when I woke up, I managed to sleep again - for nearly 12 hours. *12 hours*. I cannot even recall when I last slept that long. It wasn't the best quality sleep and I woke up feeling groggy but, by gum, it was still pretty damn good. Shame I can't just knock myself out of codeine every night. (No, I am not stupid, I shan't be doing that.)
Exciting needle sticking and pamidronate drip today. Thankfully my (fave) nurse in the chemosuite knows how to get into my veins and all was done without unecessary bruising.
I would take a picture to demonstrate the lack of success in the CT department earlier this week but the camera wants new batteries first and I can't find them.
I think I've run out of steam now - but I have written quite a lot this evening - I think wearing my Fussy shirt today has helped the word-stream....
Friday, July 13, 2007
we
::sigh::
Compression 'garments' really don't go well with hot flushes.
It's currently taking all my self-control - including muttering to myself under my breath - to stop myself from ripping them off before I explode.
Deeply unattractive - just to add to how great I feel about my body, and they itch. Itch, itch, itch.
The following are some things I'm mostly writing down to remind myself. I'm not sure what they are or if they're 'right' - in general, or for me. We'll see.
We are alone in the world
We want meaning, a place, validation
Our identity and reality is defined by our personal beliefs and ideals - we make our own meaning
We cannot depend on others for our validation
We are free to make our own choices
We are personally responsible for the outcomes of those choices - there is no-one else to blame
Choices come with anxiety - fear of failure, fear of death
BUT
We are also free to make new and different choices; to reinvent ourselves
We are the architects, builders and planners of our own lives
"we are the music makers, and we are the dreamers of dreams"
In other news - one more Zoladex injection to go!! Then, hopefully within a few months my body will revert to having hormones and stop having endless hot flushes. I could try and calculate how many I've had in the last two years but the numbers might get a bit ridiculous.....
Say, 15 a day for 2 years - how many is that?
10,950
That's quite a lot.
Any further questions as to why I am a mixed-up, crazy being??
Compression 'garments' really don't go well with hot flushes.
It's currently taking all my self-control - including muttering to myself under my breath - to stop myself from ripping them off before I explode.
Deeply unattractive - just to add to how great I feel about my body, and they itch. Itch, itch, itch.
The following are some things I'm mostly writing down to remind myself. I'm not sure what they are or if they're 'right' - in general, or for me. We'll see.
We are alone in the world
We want meaning, a place, validation
Our identity and reality is defined by our personal beliefs and ideals - we make our own meaning
We cannot depend on others for our validation
We are free to make our own choices
We are personally responsible for the outcomes of those choices - there is no-one else to blame
Choices come with anxiety - fear of failure, fear of death
BUT
We are also free to make new and different choices; to reinvent ourselves
We are the architects, builders and planners of our own lives
"we are the music makers, and we are the dreamers of dreams"
In other news - one more Zoladex injection to go!! Then, hopefully within a few months my body will revert to having hormones and stop having endless hot flushes. I could try and calculate how many I've had in the last two years but the numbers might get a bit ridiculous.....
Say, 15 a day for 2 years - how many is that?
10,950
That's quite a lot.
Any further questions as to why I am a mixed-up, crazy being??
Monday, April 23, 2007
Curry
Flipping heck! Thai Green Curry and tamoxifen/zoladex-induced hot-flushes are *not* a good combination.....
I was roasting all last night having had a *small* amount of Thai Green Curry for dinner - and I don't even like it that much so it was so not worth it.....garn!
So, take heed! Don't do it!
I was roasting all last night having had a *small* amount of Thai Green Curry for dinner - and I don't even like it that much so it was so not worth it.....garn!
So, take heed! Don't do it!
Friday, September 01, 2006
Radio trauma-rama
Class night.
I woke up at 4.30 with 'the hots'. Whilst fumbling for my chillow and waving pillows around I managed to knock over a half-full pint glass of water (Water! People! Water! I don't do the booze!). And I knocked it all over a) my pillows and my side of the bed, b) thd radio alarm clock and c) the bedside table and 'the gap' - you know, that space *between* the bed and the bedside table that is a useful cache for those things that won't fit *on* the bedside table. Mine was the repository for those big clear plastic bags full of anti-sickness medications, steroids and painkillers that I used to come away from the chemosuite, post-chemo, with.
["Hi! I'm Emily, I have cancer and I rattle when I walk!" Last year was *great* - NOT]
So currently, 'the gap' has my useful A4 notebook for planning and writing, an Asterix book (of course!), a box of 100 soluble paracetamol (they didn't have any smaller boxes in Morrisons pharmacy and it's a stupid size!)
So, I spent a happy, groggy 20 minutes with a towel drying off those things plus the stuff on the *top* of the bedside table (too. much. stuff.) including the clock which was rather damp too. Went back to sleep eventually.
Woke up - later than the alarm time - radio is making strange hissing sound. Whoops.
I play with the volume control - louder hissing. I tip it up - AHHA - if I stand it on its side then it plays!! (Of course!) So I leave it on and have a bath and get ready - now I'm ready to leave - it won't turn off!! Classy! No matter which way I tip it. So I've had to leave it singing and talking away to itself - BBC Radio 2 all day.
Class night.
The tales, they do get better....
I woke up at 4.30 with 'the hots'. Whilst fumbling for my chillow and waving pillows around I managed to knock over a half-full pint glass of water (Water! People! Water! I don't do the booze!). And I knocked it all over a) my pillows and my side of the bed, b) thd radio alarm clock and c) the bedside table and 'the gap' - you know, that space *between* the bed and the bedside table that is a useful cache for those things that won't fit *on* the bedside table. Mine was the repository for those big clear plastic bags full of anti-sickness medications, steroids and painkillers that I used to come away from the chemosuite, post-chemo, with.
["Hi! I'm Emily, I have cancer and I rattle when I walk!" Last year was *great* - NOT]
So currently, 'the gap' has my useful A4 notebook for planning and writing, an Asterix book (of course!), a box of 100 soluble paracetamol (they didn't have any smaller boxes in Morrisons pharmacy and it's a stupid size!)
So, I spent a happy, groggy 20 minutes with a towel drying off those things plus the stuff on the *top* of the bedside table (too. much. stuff.) including the clock which was rather damp too. Went back to sleep eventually.
Woke up - later than the alarm time - radio is making strange hissing sound. Whoops.
I play with the volume control - louder hissing. I tip it up - AHHA - if I stand it on its side then it plays!! (Of course!) So I leave it on and have a bath and get ready - now I'm ready to leave - it won't turn off!! Classy! No matter which way I tip it. So I've had to leave it singing and talking away to itself - BBC Radio 2 all day.
Class night.
The tales, they do get better....
Thursday, August 31, 2006
World's worst
World's worst Zoladex injection this morning. The nurse's hand slipped as she was sticking it in my abdomen and it came out and she had to reinsert it and OW! That flippin' hurt! I think that one's going to be an almighty bruise. I knew it wasn't going to be good when she had to fetch Ivy (Queen of the Chemosuite) to show her how this particular Zoladex injectable worked. Doesn't fill you with confidence, does it?
Plus it took her a really good feel-around to be confident enough to insert the needle to flush my portocath and that's always 'uncomfortable' i.e. it hurts. So a less than good day in the chemosuite - and considering I had to wait over an hour, even when I was there first thing, annoying. I guess I have a hard time accepting that I'm not the priority any more. Which is a good thing. Because being a priority means being really sick and I'm not anymore. So I was cheerful and accommodating and patient but there's a little bit of me that still wants to be looked after - to be the patient not just patient. But not really.
(Please don't send my cancer back just because I admitted that!!!)
T'was surgeon check-up on Tuesday too. All was well there. Well, all except some damn swelling in my hand which he didn't say was lymphoedema but I assume it actually is. It's tiny - you can barely see it but unfortunately I can feel it - my hand is stiff and I have pain down my arm. The surgeons response to this was 'yes, it can happen' - ARGH!!! TYPICAL SURGEON RESPONSE!!!! Pain and discomfort just doesn't register. I'm sitting there thinking 'please tell me what I can do to help make it better', surgeon's head is thinking 'it's only pain, it doesn't matter'. Well, it matters to me! I want my damn arm and hand back! I do not want lymphoedema as a daily reminder of all I've been through.
I'd also really like my knees and ankles not to seize up - sometimes I stand up and I can barely walk because I've stiffened up so much. I'm like a granny and I'm only 29 - this must cease!!
ALSO - the insane sweating has come back. I thought the gabapentin was working but the flushes are getting eviler again - my arms, they sweat!! Whose *arms* sweat?!? I mean, absolutely *dripping* and *running* with sweat. So much so that when I put my arm down on a piece of paper the other day, when I lifted it off again (I was writing) the paper was sodden - wet through and sticking to the desk. I am disgusting and I loathe it. I woke up 3 times last night and at 3 in the morning I had to go downstairs and outside where I lay on the concrete paving slabs outside the back door because they were cool and I just couldn't cool down....
Horridness
'Nuff complaining?? Perhaps so.
::Whaaa::
::Whinge::
Get over it girl - in fact, go and wash off the day's layer of sweat and go to bed to aquire some more.
Deep joy.
Plus it took her a really good feel-around to be confident enough to insert the needle to flush my portocath and that's always 'uncomfortable' i.e. it hurts. So a less than good day in the chemosuite - and considering I had to wait over an hour, even when I was there first thing, annoying. I guess I have a hard time accepting that I'm not the priority any more. Which is a good thing. Because being a priority means being really sick and I'm not anymore. So I was cheerful and accommodating and patient but there's a little bit of me that still wants to be looked after - to be the patient not just patient. But not really.
(Please don't send my cancer back just because I admitted that!!!)
T'was surgeon check-up on Tuesday too. All was well there. Well, all except some damn swelling in my hand which he didn't say was lymphoedema but I assume it actually is. It's tiny - you can barely see it but unfortunately I can feel it - my hand is stiff and I have pain down my arm. The surgeons response to this was 'yes, it can happen' - ARGH!!! TYPICAL SURGEON RESPONSE!!!! Pain and discomfort just doesn't register. I'm sitting there thinking 'please tell me what I can do to help make it better', surgeon's head is thinking 'it's only pain, it doesn't matter'. Well, it matters to me! I want my damn arm and hand back! I do not want lymphoedema as a daily reminder of all I've been through.
I'd also really like my knees and ankles not to seize up - sometimes I stand up and I can barely walk because I've stiffened up so much. I'm like a granny and I'm only 29 - this must cease!!
ALSO - the insane sweating has come back. I thought the gabapentin was working but the flushes are getting eviler again - my arms, they sweat!! Whose *arms* sweat?!? I mean, absolutely *dripping* and *running* with sweat. So much so that when I put my arm down on a piece of paper the other day, when I lifted it off again (I was writing) the paper was sodden - wet through and sticking to the desk. I am disgusting and I loathe it. I woke up 3 times last night and at 3 in the morning I had to go downstairs and outside where I lay on the concrete paving slabs outside the back door because they were cool and I just couldn't cool down....
Horridness
'Nuff complaining?? Perhaps so.
::Whaaa::
::Whinge::
Get over it girl - in fact, go and wash off the day's layer of sweat and go to bed to aquire some more.
Deep joy.
Tuesday, August 16, 2005
Counting the days
Well, here I venture tentatively into the world of blogs.
My friends in Chicago have started one to countdown the birth of their first baby; so shall I count down to the removal of my right breast? (26 days - wish I hadn't just counted to find out!)
I've been waiting for this for six months - that's what I call cruelty. Tell a girl she has cancer and has to have a breast removed and then make her wait six months while she gets pumped full of poison every three weeks. Well, she is me and that's exactly what I've been doing since February 23rd.
So, 26 days left to wear low cut tops and underwired bras - then, 'hello prosthesis' (well, eventually - have to wait for incisions to heal and radiotherapy to finish before that.) They have offered reconstruction - but since that seems to involve hacking bits of the muscle from my shoulder and then tunneling it under my arm to create the new breast; I'm not too keen. I think I'd prefer to keep the unscarred, intact parts of my body as they are, thanks.
I think I'd prefer to be in Chicago having a baby. This was not what I planned to do in my 28th year. (or is it my 29th year if I am already 28?)
Thank heaven that the hideous hot weather is holding off - I never thought I'd say that but the evil hot flushes (I hate chemotherapy!) do not mix well with temps above about 73 deg F. I am continuously taking off and putting on layers of clothing and at night I lie in bed waiting for the next whisp of breeze to come through the window. That and throwing the covers on and off every 10 minutes - I think my boyfriend is probably reeling with sleep deprivation by now.....
I have to say that the laptop on my lap ain't such a brilliant idea either (shouldn't have gone for the Inspiron) - but if I don't have it on my lap then I can't have my legs up on the desk and I'm a lazy so-and-so who likes to have her feet up (Hey, I can do what I like - I have cancer - are you going to tell me what to do?! ;O) There have to be some perks, right?)
So - what am I doing for my remaining 26 two-breast days?
Trips to Leeds, Aberystwyth and Shropshire to visit friends - hooray! Well, if you'd spent the last six months sitting around in London and Northampton under instructions to avoids crowds and ill people you'd think visiting those places was pretty exciting! No, to be fair, I am genuinely excited - the weirdness of Leeds - Leeds is weird because it's where I grew up and has completely changed in the intervening years and I can't wait to see some real hills and the sea!
Anyway, enough for now - time for another thrilling trip to Somerfield and, ooh! maybe the library.....
The fun never ends (except in 26 days)
My friends in Chicago have started one to countdown the birth of their first baby; so shall I count down to the removal of my right breast? (26 days - wish I hadn't just counted to find out!)
I've been waiting for this for six months - that's what I call cruelty. Tell a girl she has cancer and has to have a breast removed and then make her wait six months while she gets pumped full of poison every three weeks. Well, she is me and that's exactly what I've been doing since February 23rd.
So, 26 days left to wear low cut tops and underwired bras - then, 'hello prosthesis' (well, eventually - have to wait for incisions to heal and radiotherapy to finish before that.) They have offered reconstruction - but since that seems to involve hacking bits of the muscle from my shoulder and then tunneling it under my arm to create the new breast; I'm not too keen. I think I'd prefer to keep the unscarred, intact parts of my body as they are, thanks.
I think I'd prefer to be in Chicago having a baby. This was not what I planned to do in my 28th year. (or is it my 29th year if I am already 28?)
Thank heaven that the hideous hot weather is holding off - I never thought I'd say that but the evil hot flushes (I hate chemotherapy!) do not mix well with temps above about 73 deg F. I am continuously taking off and putting on layers of clothing and at night I lie in bed waiting for the next whisp of breeze to come through the window. That and throwing the covers on and off every 10 minutes - I think my boyfriend is probably reeling with sleep deprivation by now.....
I have to say that the laptop on my lap ain't such a brilliant idea either (shouldn't have gone for the Inspiron) - but if I don't have it on my lap then I can't have my legs up on the desk and I'm a lazy so-and-so who likes to have her feet up (Hey, I can do what I like - I have cancer - are you going to tell me what to do?! ;O) There have to be some perks, right?)
So - what am I doing for my remaining 26 two-breast days?
Trips to Leeds, Aberystwyth and Shropshire to visit friends - hooray! Well, if you'd spent the last six months sitting around in London and Northampton under instructions to avoids crowds and ill people you'd think visiting those places was pretty exciting! No, to be fair, I am genuinely excited - the weirdness of Leeds - Leeds is weird because it's where I grew up and has completely changed in the intervening years and I can't wait to see some real hills and the sea!
Anyway, enough for now - time for another thrilling trip to Somerfield and, ooh! maybe the library.....
The fun never ends (except in 26 days)
Subscribe to:
Posts (Atom)
