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.
Thursday, February 26, 2009
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.
Monday, November 17, 2008
Cooking dangerously
Red Velvet cake is *very* red......making it turned my fingers red.
Plus it had the oddest icing I've ever had - which was a butter cream icing with the addition of some flour cooked in milk and then left to cool before being stirred into the butter cream. Tasted fine but had a slightly gelatinous texture and was shiny and not entirely smooth. Odd, not unpleasant, just odd.
I do like to live dangerously when having people round for dinner - I'm not one for cooking old favourites - it's new recipes down the line. Hence the Red Velvet plus improvised duck. Which fortunately turned out well.....I think I like to stress myself out!! ;)
Still, now we head into the season of Christmas food - not so much trial and error there. (Although I am contemplating whether I can make some version of mincemeat with dried blueberries and cranberries - my dad can't have raisins/currants/sultanas because of his kidneys. Technically he probably shouldn't have any dried fruit at all - high potassium levels - but I was hoping that since fresh blueberries and cranberries are ok we might get away with it......shall continue to ponder.)
Plus it had the oddest icing I've ever had - which was a butter cream icing with the addition of some flour cooked in milk and then left to cool before being stirred into the butter cream. Tasted fine but had a slightly gelatinous texture and was shiny and not entirely smooth. Odd, not unpleasant, just odd.
I do like to live dangerously when having people round for dinner - I'm not one for cooking old favourites - it's new recipes down the line. Hence the Red Velvet plus improvised duck. Which fortunately turned out well.....I think I like to stress myself out!! ;)
Still, now we head into the season of Christmas food - not so much trial and error there. (Although I am contemplating whether I can make some version of mincemeat with dried blueberries and cranberries - my dad can't have raisins/currants/sultanas because of his kidneys. Technically he probably shouldn't have any dried fruit at all - high potassium levels - but I was hoping that since fresh blueberries and cranberries are ok we might get away with it......shall continue to ponder.)
Friday, November 14, 2008
Think warm thoughts
Because it's now wintery and dark at early o'clock in the evening I'm starting to feel all gloomy. So a quick sally into the summers' photo collection is in order. Join me!
A hot afternoon in York
Dressed up in my finery for a wedding
A sunny evening by Campbeltown Loch
An attack of the owls
This is what happens when I get hold of the camera - we get artsy photographs looking at perspective and focus....
A hot afternoon in York
Dressed up in my finery for a wedding
A sunny evening by Campbeltown Loch
An attack of the owls
This is what happens when I get hold of the camera - we get artsy photographs looking at perspective and focus....
Thursday, November 13, 2008
Over my shoulder
I have six pairs of waterproof trousers hanging up in my bathroom - still covered in mud. I cunningly attempted to have a bath this morning whilst still leaving them hanging up. It wasn't entirely a success since I ended up with several leaves in the bath with me...... Tomorrow I will tackle them with a scrubbing brush and the shower attachment.
Of course, from my vantage point in the bath this morning I observed that one pair actually has a torn leg; given that most of them hadn't even been worn before last Saturday means I am not pleased. So, I shall have to trawl ebay for another pair to replace them.
On the up side - at least I shan't have to clean that pair!
I was trying to explain to someone the other day that I cannot plan anymore. 2010 is the centenary of U.K. Guiding and there will be grand events afoot - and I dearly hope to see it and take part but I just find it very difficult to engage in planning for that far ahead. Actually, I find it very difficult to make plans for next week never mind next year. And it's not that I'm consciously thinking that I'm afraid to make plans or somesuch - my brain literally melts at the thought of planning things. I have no concept any longer - the future is just white mush in my mind.......
And perhaps I being just a little pissy with it - maybe something along the lines of "if you're not going to give me certainty in my life then I'm not making plans and being let down". It's kind of a feeling of avoiding being tricked or caught out. All cancer seems to achieve is making me even more obstinate.....
Of course, from my vantage point in the bath this morning I observed that one pair actually has a torn leg; given that most of them hadn't even been worn before last Saturday means I am not pleased. So, I shall have to trawl ebay for another pair to replace them.
On the up side - at least I shan't have to clean that pair!
I was trying to explain to someone the other day that I cannot plan anymore. 2010 is the centenary of U.K. Guiding and there will be grand events afoot - and I dearly hope to see it and take part but I just find it very difficult to engage in planning for that far ahead. Actually, I find it very difficult to make plans for next week never mind next year. And it's not that I'm consciously thinking that I'm afraid to make plans or somesuch - my brain literally melts at the thought of planning things. I have no concept any longer - the future is just white mush in my mind.......
And perhaps I being just a little pissy with it - maybe something along the lines of "if you're not going to give me certainty in my life then I'm not making plans and being let down". It's kind of a feeling of avoiding being tricked or caught out. All cancer seems to achieve is making me even more obstinate.....
Wednesday, November 12, 2008
That whole work thing
I survived.
The first day. Over. Done.
Wasn't as bad as it could have been.
And I got my desk back too - without having to ask. All that trauma for no reason! ::sigh:: Typical!
I skulked in at 10am without being spotted and quite shamefully lurked in the journal stacks until I could get to the stairs without being spotted. As I stood there peering through the journals I thought how much more embarrassing being caught lurking in the stacks would be compared to just having walked in and said 'hello' to people......but I got away with it anyway.
I stood outside the office door for a few minutes and it took a couple of goes before I could bring myself to actually go in. Once there it was bearable - I saw straight away that my desk was clear which took me out of my defensive mode a bit. My two immediate colleagues were pleased to see me and were welcoming without being too fussy or prying or "how are you?".
I spent the day in pottering - unpacking my stuff, trying to sort out my computer which in my absence has gone a bit potty. Initially it was having fits and telling my profile was too large - which turned out to be because it was saving multiple copies of my Outlook archives - who knows why! But the remote IT helpline people fixed that. However they couldn't work out why Workflows - the cataloguing program we use - was refusing to open. So they'll come and look at it in person tomorrow.....
Other than a little chat with my line manager about who the new folk in the office were it really wasn't much of a day. I was on the tired side by the time I went home at 3pm but wasn't completely exhausted - which was good. The real question remains of exactly how much cataloguing I actually remember; plus having to learn the new procedures and MARC 21 rules.....
And tomorrow I imagine I'll get to start investigating all this!
I had today off and I'll have Friday off too - a very gentle start with 2 days this week and probably 3 next week, plus I'm sticking at 10am-3pm for as long as I can wangle it!! :)
The only iffy bit of the day was the giant 'diss' from the girl who had been in my desk and had been moved. We did the whole nod and 'hi' thing and I said something like "[are] you alright?" and she responded with "not really" and I went all "oh, mumble" and then she proceeded to say to me "How are you? You're looking...." [pause, she looks me up and down] and I can't remember her exact word but basically something along the lines of 'not too bad'. At which I imensely insulted - plus quite amused. Mostly because I hate it when people tell me how well I'm looking - and here I was being insulted at being told I wasn't looking well!! Actually, I think most of the insult was from the fact that I'd dressed smartly for work and was actually wearing make-up for the first time in an eon. So - there we are.
Let's hope tomorrow is as mostly pain-free.
The first day. Over. Done.
Wasn't as bad as it could have been.
And I got my desk back too - without having to ask. All that trauma for no reason! ::sigh:: Typical!
I skulked in at 10am without being spotted and quite shamefully lurked in the journal stacks until I could get to the stairs without being spotted. As I stood there peering through the journals I thought how much more embarrassing being caught lurking in the stacks would be compared to just having walked in and said 'hello' to people......but I got away with it anyway.
I stood outside the office door for a few minutes and it took a couple of goes before I could bring myself to actually go in. Once there it was bearable - I saw straight away that my desk was clear which took me out of my defensive mode a bit. My two immediate colleagues were pleased to see me and were welcoming without being too fussy or prying or "how are you?".
I spent the day in pottering - unpacking my stuff, trying to sort out my computer which in my absence has gone a bit potty. Initially it was having fits and telling my profile was too large - which turned out to be because it was saving multiple copies of my Outlook archives - who knows why! But the remote IT helpline people fixed that. However they couldn't work out why Workflows - the cataloguing program we use - was refusing to open. So they'll come and look at it in person tomorrow.....
Other than a little chat with my line manager about who the new folk in the office were it really wasn't much of a day. I was on the tired side by the time I went home at 3pm but wasn't completely exhausted - which was good. The real question remains of exactly how much cataloguing I actually remember; plus having to learn the new procedures and MARC 21 rules.....
And tomorrow I imagine I'll get to start investigating all this!
I had today off and I'll have Friday off too - a very gentle start with 2 days this week and probably 3 next week, plus I'm sticking at 10am-3pm for as long as I can wangle it!! :)
The only iffy bit of the day was the giant 'diss' from the girl who had been in my desk and had been moved. We did the whole nod and 'hi' thing and I said something like "[are] you alright?" and she responded with "not really" and I went all "oh, mumble" and then she proceeded to say to me "How are you? You're looking...." [pause, she looks me up and down] and I can't remember her exact word but basically something along the lines of 'not too bad'. At which I imensely insulted - plus quite amused. Mostly because I hate it when people tell me how well I'm looking - and here I was being insulted at being told I wasn't looking well!! Actually, I think most of the insult was from the fact that I'd dressed smartly for work and was actually wearing make-up for the first time in an eon. So - there we are.
Let's hope tomorrow is as mostly pain-free.
Tuesday, November 11, 2008
Peace
When I was around 16 or 17 I read Remarque's "All Quiet on the Western Front" and I think I can quite definitively say that that book shaped my feelings and opinions on war. I could say it moved me; I could say it horrified me but actually what it did was leave me huddled on the floor, crying and rocking saying "I didn't know; I didn't understand" - for several hours. I don't think I've ever felt so guilty; so sick; so disgusted to be part of the human race - that we could kill each other; that we could kill our young. That we could have so little regard for each other that we would give in to such primitive emotions.
For many years after that I always wore a white poppy for Remembrance Day. And I can say that doing so brought me some unwelcome attention that you perhaps wouldn't expect. I wore that white poppy because I never wanted another young man or woman to die at the hands or intentions of another engaged in war. I did so because I felt so strongly that the loss of all those lives as the result of war was devastating; because I felt so distressed by the thought of all those children and wives and parents who lost sons in distant wars; because I felt so angry that these men had sacrificed themselves for those loved ones. Because in my mind they should have lived. I never wore it because I wanted to show disrespect for those who had died; or because I didn't value their sacrifice. I wore it because I wanted a better, a peaceful future - because I didn't want their sacrifice to be in vain.
But that disrespect; that lack of compassion; that was what other people seemed to see in my white poppy. In actual fact - even when I wore my white poppy I would still give money to the British Legion; and go to Remembrance Day parade services.
I haven't worn a white poppy for quite a few years now. And I've felt guilty every year that I haven't. Today I felt that wearing that red poppy had made me an accomplice to the deaths of all those Servicemen and Servicewomen in Afghanistan and Iraq in recent years. I haven't been setting the right example; I actually haven't been honouring those who have lost their lives for a better future, I've been letting their deaths become the status quo. I don't want men and women to go to war - I want us, the human race, to start learning and communicating and to start being one human race with regard and respect for life not just for lives lost.
And yes, that's a high ideal. But I think that I would rather we strove for high ideals than fulfilled lesser expectations. And whilst we don't strive for peace - we are resigning ourselves to wars.
If you have sons and daughters, wives and husbands, mothers and fathers involved in armed conflict - understand this: I want them to come home to you. I want them to live in a world where they are not asked to sacrifice themselves. I do not lack respect for what they do; I do not lack appreciation for what they do and have done and I certainly do think that we should remember all those who have died in past wars and current wars. And I have done so. But I want a different world for them, for you, for us, for me. One where we are all safe. One where it *is* quiet along the front; because there is no front. And certainly not a world where a young man sees his friends shot and blown up and hit by shrapnel and losing limbs and life.
Peace be with you, wherever you are.
So, today this blog wears what I did not today - the white poppy:
For many years after that I always wore a white poppy for Remembrance Day. And I can say that doing so brought me some unwelcome attention that you perhaps wouldn't expect. I wore that white poppy because I never wanted another young man or woman to die at the hands or intentions of another engaged in war. I did so because I felt so strongly that the loss of all those lives as the result of war was devastating; because I felt so distressed by the thought of all those children and wives and parents who lost sons in distant wars; because I felt so angry that these men had sacrificed themselves for those loved ones. Because in my mind they should have lived. I never wore it because I wanted to show disrespect for those who had died; or because I didn't value their sacrifice. I wore it because I wanted a better, a peaceful future - because I didn't want their sacrifice to be in vain.
But that disrespect; that lack of compassion; that was what other people seemed to see in my white poppy. In actual fact - even when I wore my white poppy I would still give money to the British Legion; and go to Remembrance Day parade services.
I haven't worn a white poppy for quite a few years now. And I've felt guilty every year that I haven't. Today I felt that wearing that red poppy had made me an accomplice to the deaths of all those Servicemen and Servicewomen in Afghanistan and Iraq in recent years. I haven't been setting the right example; I actually haven't been honouring those who have lost their lives for a better future, I've been letting their deaths become the status quo. I don't want men and women to go to war - I want us, the human race, to start learning and communicating and to start being one human race with regard and respect for life not just for lives lost.
And yes, that's a high ideal. But I think that I would rather we strove for high ideals than fulfilled lesser expectations. And whilst we don't strive for peace - we are resigning ourselves to wars.
If you have sons and daughters, wives and husbands, mothers and fathers involved in armed conflict - understand this: I want them to come home to you. I want them to live in a world where they are not asked to sacrifice themselves. I do not lack respect for what they do; I do not lack appreciation for what they do and have done and I certainly do think that we should remember all those who have died in past wars and current wars. And I have done so. But I want a different world for them, for you, for us, for me. One where we are all safe. One where it *is* quiet along the front; because there is no front. And certainly not a world where a young man sees his friends shot and blown up and hit by shrapnel and losing limbs and life.
Peace be with you, wherever you are.
So, today this blog wears what I did not today - the white poppy:
Subscribe to:
Comments (Atom)
