Our dearest Emily passed away peacefully at home yesterday, Thursday 9 July, surrounded by her family. We are profoundly grateful for the time she had among us and everything that she shared with us. Her courage and fortitude in the face of adversity was an inspiration to other patients at the Royal Free Hospital in Hampstead and to those she leaves behind. We give thanks for her life and for everything that she achieved, and are comforted to know that her spirit is ever with us, in the people and places that she loved. She was and is unique and irreplaceable and we shall never forget her.
Thank you for reading her blog and for helping Emily on her journey.
David ("The Dear Other") and Emily's family (Colin, Beverly and David)
Friday, July 10, 2009
Sunday, May 17, 2009
Scrambled eggs
Cancer - in cackling tones: "We're in your skull, trying to reach your bra-a-ins! Hahahaha!"
Is what an MRI of my head shows. Which explains the numb patches on my face and in my mouth. Apparently it's squeezing in between the layers of the skull and trapping nerves.
Soooooo, chemo is on hold while we do 5 or 10 doses of radiotherapy to try and fry it on the spot. I keep to meet the clinical oncologist (not the Princess Oncologist - she's a*medical* oncologist) on Tues to discuss and then have planning session ready for the new attack.
People are being positive - I have no perspective so am utterly lost and just being gently nudged around from pillar to post.
We finally had agreement that Fentanyl wasn't for me and am now on Morphine sulphate -
must improved although current dosage doesn't actually seem to be doing much actual pain *killing*. I would argue that if you're spending the day lying down or sitting down in very particular positions so you're comfortable and then are not able to walk around or stand comfortably, then there's still some fiddling with the dosage to do. Comes with it's own set of sfx of course: dry mouth (as in, I don't seem to be able to speak as my entire throat is stuck to itself. sorry.) Constipation on grandiose scale - there are a lot of laxatives out there and I think I'm taking all of them, together, and they're not working too well yet. I do keep pointing out that I haven't *had* food for 48 hours and this might have something of an effect but am being roundly ignored. Seems sensible to me - put nothin in, get nothin out - right?
OH - and in the respite between starting Morphine and the grand sickness that is something to do with my head; I managed to walk into an actual hairdressers and say, "I need my hair cut, I need it cutting short and I need it cutting now. Any chance?" Fortunately the answer was yes and it is Short
.(sorry, crappy webcam picture.)
Don't worry - I looked much paler until they put 2 units of blood into me on Friday. Takes bloody forever (hohohoho!) Not sure I feel much better other than behaving like more of a bitch than is really my due. Sorry.
So, it's not everything - but I thought all you lovely people deserved to be kept up to date. Thank you for all your love, messages, thoughts, prayers. It's all appreciated. Ta. :) My mum arrives from the States tomorrow - thank heavens. At least she knows better than to even mention baked beans to a person who has been throwing up for 2 days and is just possibly beginning to think food might be an option......Foolish move, Dear Other, foolish move. As a general tip to the rest of the Universe - Don't Do This. Thank you.
Is what an MRI of my head shows. Which explains the numb patches on my face and in my mouth. Apparently it's squeezing in between the layers of the skull and trapping nerves.
Soooooo, chemo is on hold while we do 5 or 10 doses of radiotherapy to try and fry it on the spot. I keep to meet the clinical oncologist (not the Princess Oncologist - she's a*medical* oncologist) on Tues to discuss and then have planning session ready for the new attack.
People are being positive - I have no perspective so am utterly lost and just being gently nudged around from pillar to post.
We finally had agreement that Fentanyl wasn't for me and am now on Morphine sulphate -
must improved although current dosage doesn't actually seem to be doing much actual pain *killing*. I would argue that if you're spending the day lying down or sitting down in very particular positions so you're comfortable and then are not able to walk around or stand comfortably, then there's still some fiddling with the dosage to do. Comes with it's own set of sfx of course: dry mouth (as in, I don't seem to be able to speak as my entire throat is stuck to itself. sorry.) Constipation on grandiose scale - there are a lot of laxatives out there and I think I'm taking all of them, together, and they're not working too well yet. I do keep pointing out that I haven't *had* food for 48 hours and this might have something of an effect but am being roundly ignored. Seems sensible to me - put nothin in, get nothin out - right?
OH - and in the respite between starting Morphine and the grand sickness that is something to do with my head; I managed to walk into an actual hairdressers and say, "I need my hair cut, I need it cutting short and I need it cutting now. Any chance?" Fortunately the answer was yes and it is Short
.(sorry, crappy webcam picture.)Don't worry - I looked much paler until they put 2 units of blood into me on Friday. Takes bloody forever (hohohoho!) Not sure I feel much better other than behaving like more of a bitch than is really my due. Sorry.
So, it's not everything - but I thought all you lovely people deserved to be kept up to date. Thank you for all your love, messages, thoughts, prayers. It's all appreciated. Ta. :) My mum arrives from the States tomorrow - thank heavens. At least she knows better than to even mention baked beans to a person who has been throwing up for 2 days and is just possibly beginning to think food might be an option......Foolish move, Dear Other, foolish move. As a general tip to the rest of the Universe - Don't Do This. Thank you.
Tuesday, May 05, 2009
The no good, very bad three weeks
So far, I've been sick a lot, I've slept a lot and I have a white blood cell count of 0.65.
That's the short version.
Fentanyl. This is a controlled substance. An opiate pain-killer. You have to sign at the pharmacy in order to be given it. It's a patch that you stick on your skin and it gradually releases the drug over 3 days and then you stick on a new one. Goody. The Princess Oncologist prescribed, I thought 'great' - don't have to keep taking pills all the time - it releases gradually so you don't get an up and down effect every 4-6 hours. Oh, and by the by, you can get a few side effects when you start it - nausea, sickness, drowsiness, anxiety. But you get used to it in 7-10 days and they stop.
Hohohohohohohohoho - have you met me, Princess Oncologist??
The first day I had the patch on I was virtually comatose. I couldn't stay awake, I couldn't keep my eyes open, when people spoke to me it was like I was in a fog and I thought I was saying normal things to them but I'm not too sure I was. And I'd be sleeping (if you can call it that) and I'd suddenly wake up because I felt like I'd just stopped breathing - you know that sudden catching of the breath and breathing hard? And that scared the crap out of me. And then I was nauseous - continuously but without the actual relief of throwing up. The Dear Other and my Papa were so worried about me that they rang the Macmillan Team and my nurse came out to see me.
'Oh yes', she said, 'Fentanyl will do this - but after 7-10 days it will be much better'. And phoned in a prescription for Cyclazine to my GP. Cyclazine. Yes, improves the nausea but, makes you drowsy. I spend more time sleeping/zonked-out.
Also, unnamed side-effect - strange dreams at night. Perhaps connected to the anxiety. I wake up and never want to sleep at night again.
So, this is how I spend my last weekend before starting chemo again. I am *very* cross. Or do I mean upset? Thanks to the Princess Oncologist I spent the last small amount of time before I was wiped out by chemo being ill anyway. Instead of going out and doing something nice with the Dear Other. Instead of going to the Bluebell Wood at Coton Manor Gardens. Which I really love and wanted to do and now I've missed it and I may never get another chance. If I didn't feel so shit I'd be raging. Instead I'm just crying. I think I thought I'd finally have the courage to do the whole proposing thing - since the Dear Other obviously prefers to wait until.....what? Until I'm dead? I have no idea.
So, that was 3 weeks ago - I think. And 21 days later - guess what? The patches still make me drowsy and I've done plenty of throwing up and I never want to eat food again. Or smell it. Dear Lord, please don't make me have to smell it. Or talk about it. The Dear Other and my Papa will keep asking if I'd like this or that or the other and it makes me not want to eat a solitary thing. Except, having an empty stomach makes me queasy too. So I have to force myself to have something. Ugh.
I had the first chemo about 10 days ago. They managed the get a canula in. I was remarkably calm about it all. Amazingly. They filled me up with anti-sickness steroids beforehand and I was fine the day after. The second day after I was horribly queasy and throwing up. And, of course, they'd sent me home with more steroids and the useless anti-sickness drug Domperidone. Which does precisely *nothing* for me. And I refused to take the steroids because they make me anxious and agitated. Seriously. Even now (probably from the Fentanyl) everything seems *LOUD*. Pots and pans in the other room. The Dear Other walking around. The phone ringing. It makes me start and my heart start pounding as if someone just set off the burglar alarm - in my earhole. The other day, one of my neighbours was dropped off outside by a friend and they were chatting, their kids screeching, the car still running - agitation from me, whilst trying to relax and sleep. Suddenly, someone accidentally leans on the horn of the car briefly - I scream. I felt like I'd literally hit the ceiling with shock. So, I can't take anything else that will make me more anxious.....I just can't. So, Macmillan nurse calls in script for Ondansetron. Which seems to work.
Since then, each Fentanyl patch seems to have caused nausea and often actually being sick. The damn thing means that 2 days out of 3 I'm feeling shit or at am at least sleeping. And my shoulder stills hurts anyway. Not as *much* - I'll give them that; but it's not some magic thing. Plus, since starting the patches half my lower lip and gum and chin have gone numb. Which is weird. And irritating. Very irritating.
My chemo cycle is a slightly odd one. Each cycle actually has 2 parts. You have the first go with 2 drugs and then 8 days later you have another 'top-up' of just one of the drugs. So I went in on Friday to have the 'top-up'. They took bloods first to see how I was reacting and surprise!!! My blood counts were too low to give me the chemo. In 8 days my neutrophils (the part of the white bloods cell count that fights infection, I believe) had gone from 2.49 to 0.65. Not good at all. They won't give chemo unless that count is over 1. When I had neutropaenic sepsis in 2005 after my very first round of chemo I think I was down to 0.1 or 0.2 at one point. But still, not far off. However, I didn't have a fever or a sore throat or any other obvious infection so they just sent me home. I, of course, was very worried because it was all feeling a little deja-vu; and I Do Not Want to end up in the hospital again. I Do Not Want to be on that scary ward with all the cancer patients or in isolation again. Or to have Neutropaenic Sepsis again.
I'm still worried, to be honest. I feel totally wiped out and weak and tired. Having a wash utterly exhausts me. Yesterday my Papa spent half an hour combing the mats and tangles out of my hair - because it had been pulled up on top of my head for over a week and was an utter rats nest. It's got to come off - be cut really short again because I can't cope with it; but I'm not up to going out to the hairdressers. Or probably even managing to sit there for an hour while they cut it. I'm starting to feel like just grabbing the scissors and hacking it off myself. Except, of course, my shoulder wouldn't let me get my right arm up for long enough to do it.
When I'm not zonked out, unable to keep my eyes open I read a bit. The Sweet Camden Lass is keeping me stocked up with books - hoorah! I am being very careful not to read her books when I think throwing up is on the cards. Coz that would be tragic. And rude.
In the last 3 weeks, other than 2 trips to the chemosuite where the Dear Other drove me there, I have been out of the house precisely twice. For little walks round the square outside my flat. I knew it would likely get like this eventually - I hadn't counted on it happening straightaway.
So, pretty crap. That's how I'd describe the current state of affairs. I have no appetite, I sleep a great deal, I throw up, I panic about eating and start at noises, I read, I can't bring myself to even try knitting - I just....don't seem to want to, I cry every time I have a wash, I don't go out (have to avoid any germy people anyway), I cry every time I have to go to the hospital, my shoulder and neck hurt despite the Fentanyl, I've thrown up paracetamol twice, I wear my pyjamas for days, my hair's a disaster, I feel utterly disconnected, my face has no capacity for expression - or that's how it feels; like it can't even pretend a smile; paralysed, oh, and I have bald spot the size of a penny on my head - odd, I can only lie on my back comfortably - but I want to curl up on my side; into a tiny ball, I rock when I feel too bad; like a crazy person and sometimes I just wish this would all end now - that I just wouldn't wake up tomorrow. Done. Dusted. And then some days are better and I don't think that.
I don't think I'm doing too well really. Sorry. But I'll try to keep going Winston (and the rest of y'all), I'll try.
That's the short version.
Fentanyl. This is a controlled substance. An opiate pain-killer. You have to sign at the pharmacy in order to be given it. It's a patch that you stick on your skin and it gradually releases the drug over 3 days and then you stick on a new one. Goody. The Princess Oncologist prescribed, I thought 'great' - don't have to keep taking pills all the time - it releases gradually so you don't get an up and down effect every 4-6 hours. Oh, and by the by, you can get a few side effects when you start it - nausea, sickness, drowsiness, anxiety. But you get used to it in 7-10 days and they stop.
Hohohohohohohohoho - have you met me, Princess Oncologist??
The first day I had the patch on I was virtually comatose. I couldn't stay awake, I couldn't keep my eyes open, when people spoke to me it was like I was in a fog and I thought I was saying normal things to them but I'm not too sure I was. And I'd be sleeping (if you can call it that) and I'd suddenly wake up because I felt like I'd just stopped breathing - you know that sudden catching of the breath and breathing hard? And that scared the crap out of me. And then I was nauseous - continuously but without the actual relief of throwing up. The Dear Other and my Papa were so worried about me that they rang the Macmillan Team and my nurse came out to see me.
'Oh yes', she said, 'Fentanyl will do this - but after 7-10 days it will be much better'. And phoned in a prescription for Cyclazine to my GP. Cyclazine. Yes, improves the nausea but, makes you drowsy. I spend more time sleeping/zonked-out.
Also, unnamed side-effect - strange dreams at night. Perhaps connected to the anxiety. I wake up and never want to sleep at night again.
So, this is how I spend my last weekend before starting chemo again. I am *very* cross. Or do I mean upset? Thanks to the Princess Oncologist I spent the last small amount of time before I was wiped out by chemo being ill anyway. Instead of going out and doing something nice with the Dear Other. Instead of going to the Bluebell Wood at Coton Manor Gardens. Which I really love and wanted to do and now I've missed it and I may never get another chance. If I didn't feel so shit I'd be raging. Instead I'm just crying. I think I thought I'd finally have the courage to do the whole proposing thing - since the Dear Other obviously prefers to wait until.....what? Until I'm dead? I have no idea.
So, that was 3 weeks ago - I think. And 21 days later - guess what? The patches still make me drowsy and I've done plenty of throwing up and I never want to eat food again. Or smell it. Dear Lord, please don't make me have to smell it. Or talk about it. The Dear Other and my Papa will keep asking if I'd like this or that or the other and it makes me not want to eat a solitary thing. Except, having an empty stomach makes me queasy too. So I have to force myself to have something. Ugh.
I had the first chemo about 10 days ago. They managed the get a canula in. I was remarkably calm about it all. Amazingly. They filled me up with anti-sickness steroids beforehand and I was fine the day after. The second day after I was horribly queasy and throwing up. And, of course, they'd sent me home with more steroids and the useless anti-sickness drug Domperidone. Which does precisely *nothing* for me. And I refused to take the steroids because they make me anxious and agitated. Seriously. Even now (probably from the Fentanyl) everything seems *LOUD*. Pots and pans in the other room. The Dear Other walking around. The phone ringing. It makes me start and my heart start pounding as if someone just set off the burglar alarm - in my earhole. The other day, one of my neighbours was dropped off outside by a friend and they were chatting, their kids screeching, the car still running - agitation from me, whilst trying to relax and sleep. Suddenly, someone accidentally leans on the horn of the car briefly - I scream. I felt like I'd literally hit the ceiling with shock. So, I can't take anything else that will make me more anxious.....I just can't. So, Macmillan nurse calls in script for Ondansetron. Which seems to work.
Since then, each Fentanyl patch seems to have caused nausea and often actually being sick. The damn thing means that 2 days out of 3 I'm feeling shit or at am at least sleeping. And my shoulder stills hurts anyway. Not as *much* - I'll give them that; but it's not some magic thing. Plus, since starting the patches half my lower lip and gum and chin have gone numb. Which is weird. And irritating. Very irritating.
My chemo cycle is a slightly odd one. Each cycle actually has 2 parts. You have the first go with 2 drugs and then 8 days later you have another 'top-up' of just one of the drugs. So I went in on Friday to have the 'top-up'. They took bloods first to see how I was reacting and surprise!!! My blood counts were too low to give me the chemo. In 8 days my neutrophils (the part of the white bloods cell count that fights infection, I believe) had gone from 2.49 to 0.65. Not good at all. They won't give chemo unless that count is over 1. When I had neutropaenic sepsis in 2005 after my very first round of chemo I think I was down to 0.1 or 0.2 at one point. But still, not far off. However, I didn't have a fever or a sore throat or any other obvious infection so they just sent me home. I, of course, was very worried because it was all feeling a little deja-vu; and I Do Not Want to end up in the hospital again. I Do Not Want to be on that scary ward with all the cancer patients or in isolation again. Or to have Neutropaenic Sepsis again.
I'm still worried, to be honest. I feel totally wiped out and weak and tired. Having a wash utterly exhausts me. Yesterday my Papa spent half an hour combing the mats and tangles out of my hair - because it had been pulled up on top of my head for over a week and was an utter rats nest. It's got to come off - be cut really short again because I can't cope with it; but I'm not up to going out to the hairdressers. Or probably even managing to sit there for an hour while they cut it. I'm starting to feel like just grabbing the scissors and hacking it off myself. Except, of course, my shoulder wouldn't let me get my right arm up for long enough to do it.
When I'm not zonked out, unable to keep my eyes open I read a bit. The Sweet Camden Lass is keeping me stocked up with books - hoorah! I am being very careful not to read her books when I think throwing up is on the cards. Coz that would be tragic. And rude.
In the last 3 weeks, other than 2 trips to the chemosuite where the Dear Other drove me there, I have been out of the house precisely twice. For little walks round the square outside my flat. I knew it would likely get like this eventually - I hadn't counted on it happening straightaway.
So, pretty crap. That's how I'd describe the current state of affairs. I have no appetite, I sleep a great deal, I throw up, I panic about eating and start at noises, I read, I can't bring myself to even try knitting - I just....don't seem to want to, I cry every time I have a wash, I don't go out (have to avoid any germy people anyway), I cry every time I have to go to the hospital, my shoulder and neck hurt despite the Fentanyl, I've thrown up paracetamol twice, I wear my pyjamas for days, my hair's a disaster, I feel utterly disconnected, my face has no capacity for expression - or that's how it feels; like it can't even pretend a smile; paralysed, oh, and I have bald spot the size of a penny on my head - odd, I can only lie on my back comfortably - but I want to curl up on my side; into a tiny ball, I rock when I feel too bad; like a crazy person and sometimes I just wish this would all end now - that I just wouldn't wake up tomorrow. Done. Dusted. And then some days are better and I don't think that.
I don't think I'm doing too well really. Sorry. But I'll try to keep going Winston (and the rest of y'all), I'll try.
Wednesday, April 15, 2009
Right here, right now
It's a relief really. I don't have to wait any longer. And I have felt this coming since the start of the year. Which is why I have been so quiet I think. I nearly posted one of my angst-ridden posts about waiting for test results but then I decided that I keep posting those and then stuff's ok-ish and I feel a fool.
Anyway, the CT and the MRI were done a week and a half ago and I forebore from angsting about it. Well, I did in the discomfort of my own brain but I didn't spew it all out here. Results just in: increase of cancer in lung, liver lesions and the swelling on my shoulder is due to a tumour behind the muscle pushing it all forward and squeezing the nerves in my brachial plexus which makes my hand and fingers numb. Plus causes significant pain in my shoulder and lymphoedema in my hand and arm.
Not so good really.
So, it's old-school chemo time again. 2 different drugs on day 1, 1 of them again on day 8, week off. Rinse and repeat 5 times. 6 in total. Time to have a new portocath put in. Ick. Plus a referral to Dr Adrian Tookman - a consultant in Palliative Care; but I've been told he runs a 'bootcamp for cancer patients' - sorry, no, he's interested in rehabilitation for cancer patients. And that's what I think I need - someone to get me moving again. So I'm hopeful about that. Rest assured - the Princess Oncologist tells me she still has treatments up her sleeves - we're not at the end yet.
Hopefully this won't be a hairloss drug regime; but sickness and nausea will be present.
I have decided it's time to stop working. It's time to be with the Dear Other a bit more. I just hope the whole retiring thing can be worked out well.....
I'm upset - no denying. But there is a certain calmness - no more waiting.
I leave you with a quote from Winston Churchill:
"When you're going through hell; keep going."
Anyway, the CT and the MRI were done a week and a half ago and I forebore from angsting about it. Well, I did in the discomfort of my own brain but I didn't spew it all out here. Results just in: increase of cancer in lung, liver lesions and the swelling on my shoulder is due to a tumour behind the muscle pushing it all forward and squeezing the nerves in my brachial plexus which makes my hand and fingers numb. Plus causes significant pain in my shoulder and lymphoedema in my hand and arm.
Not so good really.
So, it's old-school chemo time again. 2 different drugs on day 1, 1 of them again on day 8, week off. Rinse and repeat 5 times. 6 in total. Time to have a new portocath put in. Ick. Plus a referral to Dr Adrian Tookman - a consultant in Palliative Care; but I've been told he runs a 'bootcamp for cancer patients' - sorry, no, he's interested in rehabilitation for cancer patients. And that's what I think I need - someone to get me moving again. So I'm hopeful about that. Rest assured - the Princess Oncologist tells me she still has treatments up her sleeves - we're not at the end yet.
Hopefully this won't be a hairloss drug regime; but sickness and nausea will be present.
I have decided it's time to stop working. It's time to be with the Dear Other a bit more. I just hope the whole retiring thing can be worked out well.....
I'm upset - no denying. But there is a certain calmness - no more waiting.
I leave you with a quote from Winston Churchill:
"When you're going through hell; keep going."
Thursday, April 02, 2009
Whilst you're down there....
I'm so upset.
I've had a lovely 10 days with my brother visiting me from the States and we did some fun and important stuff like spending a couple of days on Lindisfarne where we used to go on holidays as children.
He flew home last night and I was so sad to see him go and apparently he got back having flown 7 and a half hours and his girlfriend picked him up at the airport at 9pm, dropped him off at home while she went to check on a house she was 'sitting' and then came back and dumped him at 1am in the morning.
He's had so much crap in his life already that this was the last thing he needed. He's just weaned himself off antidepressants after around 5 years. His job ends in a month when the store he works in is being closed. He never finished college because of the depression and has never been able to bring himself to go back. He's not eligible for COBRA so he'll have no health insurance. Plus all the crap that's happened to me.
This is not fair. I just want my little brother to be happy. To have someone to support him when things get back with me. To have something go right in his life. I swear my family is cursed. I don't know what we ever did wrong. I've always thought we were good people. I'm sick of it. Sick of constantly dealing with hard stuff. I'm so tired of holding it together, of keeping on keeping on. I'm sick of it; I don't want to anymore. I'd like to give up now.
I've had a lovely 10 days with my brother visiting me from the States and we did some fun and important stuff like spending a couple of days on Lindisfarne where we used to go on holidays as children.
He flew home last night and I was so sad to see him go and apparently he got back having flown 7 and a half hours and his girlfriend picked him up at the airport at 9pm, dropped him off at home while she went to check on a house she was 'sitting' and then came back and dumped him at 1am in the morning.
He's had so much crap in his life already that this was the last thing he needed. He's just weaned himself off antidepressants after around 5 years. His job ends in a month when the store he works in is being closed. He never finished college because of the depression and has never been able to bring himself to go back. He's not eligible for COBRA so he'll have no health insurance. Plus all the crap that's happened to me.
This is not fair. I just want my little brother to be happy. To have someone to support him when things get back with me. To have something go right in his life. I swear my family is cursed. I don't know what we ever did wrong. I've always thought we were good people. I'm sick of it. Sick of constantly dealing with hard stuff. I'm so tired of holding it together, of keeping on keeping on. I'm sick of it; I don't want to anymore. I'd like to give up now.
Thursday, February 26, 2009
Set condition 2 throughout the ship
Hello - apparently I am a huge drama queen who should just stop whining.....
I still entirely blame February.
There will be a CT scan in the next month or so to check the state of the lungs. The Princess Oncologist was unimpressed with pain in the shoulder and didn't even want to look at it.
The lymphoedema massage was painful.
You know people sometimes refer to 'good' pain? Well, this wasn't that. It was "owowowowowowowow please stop" type of pain. It was pain that means some of the lymph fluid was moving but under no definition was it 'good'. I hope the *consequence* of it will be good - but I've got another 3 sessions yet and the pain itself? Crap.
The oncology clinic seems to have tapped into my psyche. Last week I sobbed at the Dear Other that I didn't think I could stand to sit in that corridor one more time, I hated it and I didn't want to go there ever again. When we arrived at the clinic yesterday there were signs indicating that we needed to follow the arrows elsewhere. Lo! And Behold! The clinic has moved to their new home (which has been on the cards for nearly a year, I think). But I didn't! I didn't have to sit in that corridor! Or go in that office where I've kept hearing bad news! I never have to go in there again!! They fulfilled my wish of not having to go there again. The relief! They celebrated by making me wait for my 11.30am appointment until 12.45pm.......sigh. Some things *don't* change. The new clinic has windows! (The view is crap, but, daylight!) And a waiting area that isn't a corridor! And is shared with cardiology - so rather elderly people keep shuffling in and out.....perhaps it was just Elderly People Day because I'm sure heart conditions apply to many age groups.....
So, I survived for another 6 weeks. Then there will be Results and far more of a likelihood of Change.
Thank you all who rooted for good news. I think you swung it. Especially those of you who crept out of the woodwork and especially those who root all the time and say so. I appreciate you all. I really, really do.
Roll on March.
I still entirely blame February.
There will be a CT scan in the next month or so to check the state of the lungs. The Princess Oncologist was unimpressed with pain in the shoulder and didn't even want to look at it.
The lymphoedema massage was painful.
You know people sometimes refer to 'good' pain? Well, this wasn't that. It was "owowowowowowowow please stop" type of pain. It was pain that means some of the lymph fluid was moving but under no definition was it 'good'. I hope the *consequence* of it will be good - but I've got another 3 sessions yet and the pain itself? Crap.
The oncology clinic seems to have tapped into my psyche. Last week I sobbed at the Dear Other that I didn't think I could stand to sit in that corridor one more time, I hated it and I didn't want to go there ever again. When we arrived at the clinic yesterday there were signs indicating that we needed to follow the arrows elsewhere. Lo! And Behold! The clinic has moved to their new home (which has been on the cards for nearly a year, I think). But I didn't! I didn't have to sit in that corridor! Or go in that office where I've kept hearing bad news! I never have to go in there again!! They fulfilled my wish of not having to go there again. The relief! They celebrated by making me wait for my 11.30am appointment until 12.45pm.......sigh. Some things *don't* change. The new clinic has windows! (The view is crap, but, daylight!) And a waiting area that isn't a corridor! And is shared with cardiology - so rather elderly people keep shuffling in and out.....perhaps it was just Elderly People Day because I'm sure heart conditions apply to many age groups.....
So, I survived for another 6 weeks. Then there will be Results and far more of a likelihood of Change.
Thank you all who rooted for good news. I think you swung it. Especially those of you who crept out of the woodwork and especially those who root all the time and say so. I appreciate you all. I really, really do.
Roll on March.
Monday, February 23, 2009
Poke, poke, poke
I have this pain in my thigh. Sort of pokey. Very localised. About 6cm in diameter. It's worse at night, especially when I lie down. Goes on pretty much all night. And it makes me want to stab it with a very sharp, pointy knife.
Probably on the basis that the new pain would detract from the original pain.
The only thing that makes it go away is the Co-dydramol but when the rest of me isn't in pain I'm not taking it because I have a 6cm patch on pain in my thigh. That's ridiculous.
However, do not be surprised if you catch me thumping my own leg saying things like "Just fuck off!"
Probably on the basis that the new pain would detract from the original pain.
The only thing that makes it go away is the Co-dydramol but when the rest of me isn't in pain I'm not taking it because I have a 6cm patch on pain in my thigh. That's ridiculous.
However, do not be surprised if you catch me thumping my own leg saying things like "Just fuck off!"
Sunday, February 22, 2009
February blues
Hello, it's February.
It's always bad in February - see previous Februarys.
Same thing - bit worse.
I am mostly coping by putting my head down and forging towards March. There will be a slight hiccup on Wednesday because I can't ignore or avoid the Princess Oncologist. I am fearing bad news. I am always fearing bad news. But this time I think there are some nodes in my neck that weren't there before. And my shoulder is looking scary. I thought for ages it was lymphoedema - which it still may be, partially or entirely - but there's now a distinct bump at the front......
I think this may be my last year. And I fear that thinking it will make it so. So I try not to think it. Which is hard to achieve. I didn't really believe that 32 would be it. I still don't but it's starting to feel a bit like it. This is Not Enough. 32 years is Not Enough.
I am very, very frightened. Not of being dead. Of the dying. I am too vain to die. You look crap and death-y for ages leading up to it. I'm not up for that. Plus, you know, being in pain and fear and sadness.
February, hurry up and leave. I hate you and you make me totally unsettled.
It's always bad in February - see previous Februarys.
Same thing - bit worse.
I am mostly coping by putting my head down and forging towards March. There will be a slight hiccup on Wednesday because I can't ignore or avoid the Princess Oncologist. I am fearing bad news. I am always fearing bad news. But this time I think there are some nodes in my neck that weren't there before. And my shoulder is looking scary. I thought for ages it was lymphoedema - which it still may be, partially or entirely - but there's now a distinct bump at the front......
I think this may be my last year. And I fear that thinking it will make it so. So I try not to think it. Which is hard to achieve. I didn't really believe that 32 would be it. I still don't but it's starting to feel a bit like it. This is Not Enough. 32 years is Not Enough.
I am very, very frightened. Not of being dead. Of the dying. I am too vain to die. You look crap and death-y for ages leading up to it. I'm not up for that. Plus, you know, being in pain and fear and sadness.
February, hurry up and leave. I hate you and you make me totally unsettled.
Friday, February 06, 2009
The pincushion
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.....
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.....
Friday, January 23, 2009
The pills, the pills....
Isn't it interesting how, if you speak to the right person, suddenly things are possible.....
I saw the Princess Oncologist last week for the results of the last CT scan. Bit odd. There are a couple of new nodes in the lung; but one is 1 millimetre and the other is 2 millimetres. So she was implying that she wasn't 100% sure they were *really* there?! But even if they are then they're so small that she wouldn't consider changing the treatment regime. My bones are mostly showing up as sclerotic (I think that's how you spell it) - which basically means bone scar-tissue. I think this is a good thing. I'm not sure.
So - sticking with the aromastase inhibitors - but she did agree to swop me onto Exemestane instead of Arimidex - a very small minority of people with Arimidex pain will do better on this. I'm hoping to be one of them.
Also - better pain killers *can* be had! Diclofenac and Co-Drydamol are the order of the day. I'm not thrilled. Diclofenac has upset my stomach when I had in the past and, well, Co-Drydamol is just codeine in another form. But, as ever, I refuse to be a model patient and just take my drugs. I have, of course, been playing with them already to see what the minimum I can get away with is. And because the Princess Oncologist has apparently met me before she has set a Macmillan nurse on me to supervise. Well, she asked if I'd agree to that - which I did. Surprisingly. I was in pain on the day. I'm surprised I didn't just panic and refuse because I associate Macmillan with the whole Palliative (no-hope) scene which I'm not ready for yet. Well, I'll never be ready for it. How can you be?
However, the Macmillan nurse and I are playing phone-tag at the moment so I'll probably have it all sussed out by the time we actually manage to get in contact with each other at the same time.
So, all that useless rabbiting by the useless breastcare nurse was rubbish.
So, people keep telling me this is good news. I, don't feel like that, so much. There may or may not be progression - the progression could have occured while we were waiting for the Arimidex to build up to beneficial levels in my body - takes at least six weeks. I just, I don't know, I just don't feel that confident. Or celebratory.
I saw the Princess Oncologist last week for the results of the last CT scan. Bit odd. There are a couple of new nodes in the lung; but one is 1 millimetre and the other is 2 millimetres. So she was implying that she wasn't 100% sure they were *really* there?! But even if they are then they're so small that she wouldn't consider changing the treatment regime. My bones are mostly showing up as sclerotic (I think that's how you spell it) - which basically means bone scar-tissue. I think this is a good thing. I'm not sure.
So - sticking with the aromastase inhibitors - but she did agree to swop me onto Exemestane instead of Arimidex - a very small minority of people with Arimidex pain will do better on this. I'm hoping to be one of them.
Also - better pain killers *can* be had! Diclofenac and Co-Drydamol are the order of the day. I'm not thrilled. Diclofenac has upset my stomach when I had in the past and, well, Co-Drydamol is just codeine in another form. But, as ever, I refuse to be a model patient and just take my drugs. I have, of course, been playing with them already to see what the minimum I can get away with is. And because the Princess Oncologist has apparently met me before she has set a Macmillan nurse on me to supervise. Well, she asked if I'd agree to that - which I did. Surprisingly. I was in pain on the day. I'm surprised I didn't just panic and refuse because I associate Macmillan with the whole Palliative (no-hope) scene which I'm not ready for yet. Well, I'll never be ready for it. How can you be?
However, the Macmillan nurse and I are playing phone-tag at the moment so I'll probably have it all sussed out by the time we actually manage to get in contact with each other at the same time.
So, all that useless rabbiting by the useless breastcare nurse was rubbish.
So, people keep telling me this is good news. I, don't feel like that, so much. There may or may not be progression - the progression could have occured while we were waiting for the Arimidex to build up to beneficial levels in my body - takes at least six weeks. I just, I don't know, I just don't feel that confident. Or celebratory.
Thursday, January 15, 2009
Legs
Happy New Year - blah etc,
Happy fucking leg cramp that won't go away.
Happy new pain killers that are not making the leg cramp go away.
Happy no sleep for me tonight, thanks.
So, so, soso, so , so so tired of this all.
Happy fucking leg cramp that won't go away.
Happy new pain killers that are not making the leg cramp go away.
Happy no sleep for me tonight, thanks.
So, so, soso, so , so so tired of this all.
Saturday, December 20, 2008
More travel insurance
To be clear - they did insure me in the end - as a 'goodwill gesture'; but probably won't do so again.
I cried - no, I'll be honest, I bawled down the phone at them to the extent that I was barely intelligible while giving my credit card details. So much so that the woman who was dealing with me became so upset that someone else had to take over.
I hate that crying that ends up with those juddering breath/sobs that you can't stop.
They then told me to have a good trip and the woman who'd taken over said 'go and have a nice cup of tea.' - To which I replied 'I don't think tea cures cancer' - or I would've done if I'd been able to enunciate the words - it came out more like gobbledygook and I caught myself when she said she hadn't heard what I'd said and just said 'thank you'. Because, as I'd said to the other woman - it wasn't her fault and actually it was horribly unfair that she had to be the one to tell me this and to deal with a distraught person on the phone - it was the decision of the underwriters who, of course, don't deal with the customers. Which is pretty luxurious for them. I get really angry about things like that. I'm not surprised when my cancer means that I can't have what I want - but I get angry when people won't face me with it. If you're going to deny me something then you better tell me yourself and take it when I get upset and angry. You have to listen to me because I don't see why you should get to run away. Take responsibility for what you've caused. Be the big person and deal with my upset. Trust me, no matter how much you don't want to and no matter how uncomfortable it makes you - it's worse for me. It will always be worse for me. So don't be so cowardly. Worms.
So, I can no longer recommend InsurePink travel insurers if you have mets. I expect they're still not bad if you've had cancer but are now in the clear and to be fair, they have always been very easy to deal with and talk to when going through the medical questions. But if your cancer is metastatic: keep looking......
Oh, and sorry I upset you Mirriam.
I cried - no, I'll be honest, I bawled down the phone at them to the extent that I was barely intelligible while giving my credit card details. So much so that the woman who was dealing with me became so upset that someone else had to take over.
I hate that crying that ends up with those juddering breath/sobs that you can't stop.
They then told me to have a good trip and the woman who'd taken over said 'go and have a nice cup of tea.' - To which I replied 'I don't think tea cures cancer' - or I would've done if I'd been able to enunciate the words - it came out more like gobbledygook and I caught myself when she said she hadn't heard what I'd said and just said 'thank you'. Because, as I'd said to the other woman - it wasn't her fault and actually it was horribly unfair that she had to be the one to tell me this and to deal with a distraught person on the phone - it was the decision of the underwriters who, of course, don't deal with the customers. Which is pretty luxurious for them. I get really angry about things like that. I'm not surprised when my cancer means that I can't have what I want - but I get angry when people won't face me with it. If you're going to deny me something then you better tell me yourself and take it when I get upset and angry. You have to listen to me because I don't see why you should get to run away. Take responsibility for what you've caused. Be the big person and deal with my upset. Trust me, no matter how much you don't want to and no matter how uncomfortable it makes you - it's worse for me. It will always be worse for me. So don't be so cowardly. Worms.
So, I can no longer recommend InsurePink travel insurers if you have mets. I expect they're still not bad if you've had cancer but are now in the clear and to be fair, they have always been very easy to deal with and talk to when going through the medical questions. But if your cancer is metastatic: keep looking......
Oh, and sorry I upset you Mirriam.
Friday, December 19, 2008
Just ring! - Or actually, don't. Piss off.
Update:
They'll insure me as a one-off as a gesture of goodwill this time but underwriting changes all the time and I can try them in the future but they may not insure me (i.e won't insure me). Because they're not set up for helping people with metastases just people who've had cancer but are better now.
So there.
And it's not because I have cancer it's because I'm going to the U.S.A. - except of course, it *is* because of the cancer - because if I didn't have cancer they'd insure me.
I've had this underlying feeling this would be the last Christmas I'd have in the States. Perhaps I was right.
Oh hey! Merry Christmas! Have a great one!
***********************************************
Urgle,
waitwaitwaitwaitwait.
Ickety waiting for the Travel Insurance people to call me back and say if they're going to insure me or not.
The relevant person is only on the end of an email or something and I've been waiting for nearly 3 hours. Which is silly - they insured me a month ago for Thanksgiving - nothing has changed since then. There is no reason why they shouldn't be able to do it. I just have to wait until the supervisor ok's it.
So why am I researching other Insurance companies?.....
They'll insure me as a one-off as a gesture of goodwill this time but underwriting changes all the time and I can try them in the future but they may not insure me (i.e won't insure me). Because they're not set up for helping people with metastases just people who've had cancer but are better now.
So there.
And it's not because I have cancer it's because I'm going to the U.S.A. - except of course, it *is* because of the cancer - because if I didn't have cancer they'd insure me.
I've had this underlying feeling this would be the last Christmas I'd have in the States. Perhaps I was right.
Oh hey! Merry Christmas! Have a great one!
***********************************************
Urgle,
waitwaitwaitwaitwait.
Ickety waiting for the Travel Insurance people to call me back and say if they're going to insure me or not.
The relevant person is only on the end of an email or something and I've been waiting for nearly 3 hours. Which is silly - they insured me a month ago for Thanksgiving - nothing has changed since then. There is no reason why they shouldn't be able to do it. I just have to wait until the supervisor ok's it.
So why am I researching other Insurance companies?.....
Tuesday, December 09, 2008
Brrrring, brrring
Oh, I'm so glad I rang up the breast care nursing team - I got some very useful advice.
.....
.....
.....
.....
Sorry, I was waiting for whomever that statement applies to to chime in and tell us all what the advice was - coz I could use some more!
Sadly, when I rang yesterday I got the useless-[hmmm, let's not use her real name....let's call her.....Meringue! Yes! That will do!].. I rang and got The Useless-Meringue! In the past she has on two occasions said she was going to call me back about something and then hasn't; plus she has told me diametrically the wrong information about one other query I had. Excellent! Sadly, again, the nurse I *do* like - because she is actually *helpful* - was not there..... :(
So, I said - pain! I have pain! You told me the Arimidex might do this! It hurts! Paracetamol and ibuprofen help a bit! Cocodamol or Neurofen Plus help more! But Codeine! They have codeine in which blocks up the old digestive tract as soon as I open the packet! Try not to take those too much! Heat helps!
The Useless-Meringue says: Yes! Arimidex can cause pain! Do you want to move your appointment forward!? (Me: NOOOOOO!) When was your last bone scan?! (Me: Areeeeghhhhh! September! Plus, NOOOOOO!) Are you sure it's the Arimidex?! (Me - in head: WTF?!! *I* don't know! How am I supposed to know? Me - out loud: No, I'm not sure - but the pain does improve with heat and movement (i.e. Probably muscular rather than bony pain) I'll speak to the Registrar and call you before I go home tonight! (Me: Thank you!)
9 hours later:
Me: Hah! She's not going to ring again!
Phone rings - points awarded
The Useless Meringue: Take the painkillers and call me again if they stop working! Call us and we'll move your appointment forward if you're worried!
Me:........OK.......do you have any other tips for anything that might help or, anything?
The Useless Meringue:...Not really!
Me:..........OK........well, can I have some more Lorazepam then please?
The Useless Meringue:......Yes! We can do that! We will send prescription to pharmacy and you can collect it!
Me:...............OK..........thank you. Um, will this go away eventually - how long does it last?
The Useless Meringue:..Well, some people find it goes away but for some people it doesn't. But! Arimidex is one of three drugs in the Aromatase family; so we can try you on one of the others if it doesn't go away!
Me:.....So, how long until you know if it will go away or not?
The U.M.: A few months!
Me:..........................OK.................right...............thanks. Ok. Right. Right.
The U.M.: Does exercise help?!
Me: Um, well, it's better when I've been moving around....
The U.M.: Light exercise! Try that!
Me:.....Right. Thanks........Bye!
So I am exactly where I was this time yesterday. Bar some Lorazepam. Which was off my own bat. You can't hear my head falling off my shoulders here - but it has.
I shouldn't be surprised.
Side-effects in the cancer world are just par for the course. The attitude isn't quite: "Tough. Suck it up." But it nearly is.
It makes the Dear Other absolutely livid. If he had made his millions he'd throw it all into research into alieviating side effects to cancer drugs. But he hasn't.
So, to recap:
Ouch.
.....
.....
.....
.....
Sorry, I was waiting for whomever that statement applies to to chime in and tell us all what the advice was - coz I could use some more!
Sadly, when I rang yesterday I got the useless-[hmmm, let's not use her real name....let's call her.....Meringue! Yes! That will do!].. I rang and got The Useless-Meringue! In the past she has on two occasions said she was going to call me back about something and then hasn't; plus she has told me diametrically the wrong information about one other query I had. Excellent! Sadly, again, the nurse I *do* like - because she is actually *helpful* - was not there..... :(
So, I said - pain! I have pain! You told me the Arimidex might do this! It hurts! Paracetamol and ibuprofen help a bit! Cocodamol or Neurofen Plus help more! But Codeine! They have codeine in which blocks up the old digestive tract as soon as I open the packet! Try not to take those too much! Heat helps!
The Useless-Meringue says: Yes! Arimidex can cause pain! Do you want to move your appointment forward!? (Me: NOOOOOO!) When was your last bone scan?! (Me: Areeeeghhhhh! September! Plus, NOOOOOO!) Are you sure it's the Arimidex?! (Me - in head: WTF?!! *I* don't know! How am I supposed to know? Me - out loud: No, I'm not sure - but the pain does improve with heat and movement (i.e. Probably muscular rather than bony pain) I'll speak to the Registrar and call you before I go home tonight! (Me: Thank you!)
9 hours later:
Me: Hah! She's not going to ring again!
Phone rings - points awarded
The Useless Meringue: Take the painkillers and call me again if they stop working! Call us and we'll move your appointment forward if you're worried!
Me:........OK.......do you have any other tips for anything that might help or, anything?
The Useless Meringue:...Not really!
Me:..........OK........well, can I have some more Lorazepam then please?
The Useless Meringue:......Yes! We can do that! We will send prescription to pharmacy and you can collect it!
Me:...............OK..........thank you. Um, will this go away eventually - how long does it last?
The Useless Meringue:..Well, some people find it goes away but for some people it doesn't. But! Arimidex is one of three drugs in the Aromatase family; so we can try you on one of the others if it doesn't go away!
Me:.....So, how long until you know if it will go away or not?
The U.M.: A few months!
Me:..........................OK.................right...............thanks. Ok. Right. Right.
The U.M.: Does exercise help?!
Me: Um, well, it's better when I've been moving around....
The U.M.: Light exercise! Try that!
Me:.....Right. Thanks........Bye!
So I am exactly where I was this time yesterday. Bar some Lorazepam. Which was off my own bat. You can't hear my head falling off my shoulders here - but it has.
I shouldn't be surprised.
Side-effects in the cancer world are just par for the course. The attitude isn't quite: "Tough. Suck it up." But it nearly is.
It makes the Dear Other absolutely livid. If he had made his millions he'd throw it all into research into alieviating side effects to cancer drugs. But he hasn't.
So, to recap:
Ouch.
Saturday, December 06, 2008
Where I beg
Cancer related things are kicking my butt at the moment.
After months of jollying along, the big ol' sad has caught up with me again. Mostly because Arimidex is *hurting* at the moment. My lower back and hip joints *hurt*. Of the 'I'm uncomfortable standing, sitting and lying down' variety. Of the ibuprofen and paracetamol are not really cutting it pain-killing-wise at the moment. Of the 'only boiling heat seems to dull the pain enough to sleep' variety. There are only so many nights and days you can go through without starting to turn into some insane, about to eff and blind at anyone and everyone type of person.
And at moments like that my brain gets locked down into panic-mode. And all I can think is that the medication isn't working; the cancer is eating away my pelvis and spine and the end is nigh - woe is me - etc, etc.
And I scare myself when I get like that. I start to worry that I'm going to accidentally kill myself by taking too many painkillers - just because I got to that point where I was so desperate to make the pain stop for just a moment that I took another dose. I'm not saying I'm about to do that - in fact I'm bloody careful not to; but I can see so clearly how you could end up there.
I know I'm going to have to call my breast care nurse and at least get some sleeping/relaxant stuff from her. But I'm just so scared that they're going to whisk me in to have tests done and I'm going to end up not being able to go out to the States to be with my mum and my brother for Christmas. And we've booked the flights. And the insurance companies either won't insure me for anything cancer-related or they won't cover cancellation and curtailment. Either way it will be money wasted. And I won't get to have old-school Christmas.
Hate This.
The other morning the sun was shining so brightly but it was really cold - quite a rarity here; and I was so torn. It was beautiful but it made me sad. And I thought - I don't want to love like this; here, in this life of mine. But I can't go back to my old life. And I can't change the fact I have cancer. Wherever I go; whatever I change; I can't change that. If I do something new or different then I'm just dragging cancer off to the new and different spot with me. It doesn't go. It's the cartoon/old movie irons around the ankles.
Second verse, same as the first.
The other night I got home and just ended up crying and saying 'please'. Over and over and over again. Begging. With God, with the Universe; with the wind and the cloud and the rain and the snow and the ocean - with every wave in the sea. Just 'please' - please let the last four years have been a dream. That 'worst nightmare I've ever had' that was my first thought when they said it was cancer. Please. Please let this not be. Please. Please. I don't know how to ask any more nicely. I don't know how to be any better; any more deserving.
My miracle. Please.
Or maybe - if this has to be real - could I live in the dreamworld instead. Shut down this external existence and just live in dreams.
Please.
Please.
After months of jollying along, the big ol' sad has caught up with me again. Mostly because Arimidex is *hurting* at the moment. My lower back and hip joints *hurt*. Of the 'I'm uncomfortable standing, sitting and lying down' variety. Of the ibuprofen and paracetamol are not really cutting it pain-killing-wise at the moment. Of the 'only boiling heat seems to dull the pain enough to sleep' variety. There are only so many nights and days you can go through without starting to turn into some insane, about to eff and blind at anyone and everyone type of person.
And at moments like that my brain gets locked down into panic-mode. And all I can think is that the medication isn't working; the cancer is eating away my pelvis and spine and the end is nigh - woe is me - etc, etc.
And I scare myself when I get like that. I start to worry that I'm going to accidentally kill myself by taking too many painkillers - just because I got to that point where I was so desperate to make the pain stop for just a moment that I took another dose. I'm not saying I'm about to do that - in fact I'm bloody careful not to; but I can see so clearly how you could end up there.
I know I'm going to have to call my breast care nurse and at least get some sleeping/relaxant stuff from her. But I'm just so scared that they're going to whisk me in to have tests done and I'm going to end up not being able to go out to the States to be with my mum and my brother for Christmas. And we've booked the flights. And the insurance companies either won't insure me for anything cancer-related or they won't cover cancellation and curtailment. Either way it will be money wasted. And I won't get to have old-school Christmas.
Hate This.
The other morning the sun was shining so brightly but it was really cold - quite a rarity here; and I was so torn. It was beautiful but it made me sad. And I thought - I don't want to love like this; here, in this life of mine. But I can't go back to my old life. And I can't change the fact I have cancer. Wherever I go; whatever I change; I can't change that. If I do something new or different then I'm just dragging cancer off to the new and different spot with me. It doesn't go. It's the cartoon/old movie irons around the ankles.
Second verse, same as the first.
The other night I got home and just ended up crying and saying 'please'. Over and over and over again. Begging. With God, with the Universe; with the wind and the cloud and the rain and the snow and the ocean - with every wave in the sea. Just 'please' - please let the last four years have been a dream. That 'worst nightmare I've ever had' that was my first thought when they said it was cancer. Please. Please let this not be. Please. Please. I don't know how to ask any more nicely. I don't know how to be any better; any more deserving.
My miracle. Please.
Or maybe - if this has to be real - could I live in the dreamworld instead. Shut down this external existence and just live in dreams.
Please.
Please.
Sunday, November 23, 2008
Long live internet shopping!
I have nearly recovered.
From Oxford Street and its environs on a Saturday in late November.
I managed not to kill anyone although the urge was strong.
Too many people in not enough space equals me wanting to batter said people.
And I had to deal with beads. About which I knew virtually nothing. I now know they're expensive. And that the shop I went to advertises things at different prices for different quantities on their website than they sell in store. I also couldn't find half of what I saw on their website. ::loathing::
Necessitating a further foray through the crowds to John Lewis, who also didn't have everything I wanted but did have preposterous queues which I stood in and debated whether I was going to faint and what I'd end up saying to nice ambulance personnel if I did so. Fainting was avoided. I was very hot. I get hotter when I get stressed and I Was Stressed. I was consequently distinctly soggy.
John Lewis also helpfully has those wheely baskets - I am in favour of. Sadly they don't have aisles large enough to accommodate the baskets and other people. ::groan::
This expedition meant I was not in favour of going to Sainsburys for something for dinner so we went to the Cambodian place round the corner. I had too much salt (I think) and having fallen asleep for 2 hours at 9.30pm woke up and then couldn't get back to sleep until gone 2am; because I was Hot and also felt like I'd had all the liquid sucked out of me and my tongue was sticking to the inside of my mouth. I did keep drinking water - but I think I was just sweating it off again.....
::blech::
Tongue has mostly unstuck itself now.
From Oxford Street and its environs on a Saturday in late November.
I managed not to kill anyone although the urge was strong.
Too many people in not enough space equals me wanting to batter said people.
And I had to deal with beads. About which I knew virtually nothing. I now know they're expensive. And that the shop I went to advertises things at different prices for different quantities on their website than they sell in store. I also couldn't find half of what I saw on their website. ::loathing::
Necessitating a further foray through the crowds to John Lewis, who also didn't have everything I wanted but did have preposterous queues which I stood in and debated whether I was going to faint and what I'd end up saying to nice ambulance personnel if I did so. Fainting was avoided. I was very hot. I get hotter when I get stressed and I Was Stressed. I was consequently distinctly soggy.
John Lewis also helpfully has those wheely baskets - I am in favour of. Sadly they don't have aisles large enough to accommodate the baskets and other people. ::groan::
This expedition meant I was not in favour of going to Sainsburys for something for dinner so we went to the Cambodian place round the corner. I had too much salt (I think) and having fallen asleep for 2 hours at 9.30pm woke up and then couldn't get back to sleep until gone 2am; because I was Hot and also felt like I'd had all the liquid sucked out of me and my tongue was sticking to the inside of my mouth. I did keep drinking water - but I think I was just sweating it off again.....
::blech::
Tongue has mostly unstuck itself now.
Friday, November 21, 2008
::snooze::
I'm really tired this evening.
I was late to bed last night and getting up for work this morning was hard. I really didn't want to go. It was OK once I was there and I seem to be getting back into the swing of the work fairly easily. I took my headphones in so I could listen to the radio whilst working which helped to stop be feeling a bit bored.
Guides were giddy and unwilling to listen this evening. ::sigh:: I am too tired to do a good job and keep feeling like I'm just not achieving enough for them. I feel like there are so many things we have to get done that they're not getting to do what they want to do. And I am doing precisely 0 delegating - I really bad at that. ::sigh::
I think I should go to bed.
I'm probably too tired to be even thinking about it all.
Night night.
I was late to bed last night and getting up for work this morning was hard. I really didn't want to go. It was OK once I was there and I seem to be getting back into the swing of the work fairly easily. I took my headphones in so I could listen to the radio whilst working which helped to stop be feeling a bit bored.
Guides were giddy and unwilling to listen this evening. ::sigh:: I am too tired to do a good job and keep feeling like I'm just not achieving enough for them. I feel like there are so many things we have to get done that they're not getting to do what they want to do. And I am doing precisely 0 delegating - I really bad at that. ::sigh::
I think I should go to bed.
I'm probably too tired to be even thinking about it all.
Night night.
Thursday, November 20, 2008
Wednesday, November 19, 2008
The future.......
My brain just exploded. I just read the date 2016. The year, the date, 2016. Is it just me or does this look like a totally made up date? My brain can cope with 2012 - 2013 and beyond? Nope, doesn't exist.
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.
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