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.

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.

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.

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.

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.

Na Blo Po Mo. Again. Again.

It's that NaBloPoMo time of year again - my heart isn't in it this year so don't be surprised if I vanish midway through.....
Eloquence feels like it's ebbing away. Along with my brain.
Apparently I managed to go to Northampton without my Arimidex last weekend - but didn't notice that I hadn't been taking them for three days....in fact, I thought I *had* taken them at least once and then misplaced the pills but when I got back to London they were here; so I obviously hadn't. On the plus side I had a few days of hardly any hot flushes; on the minus side my axilla and shoulder started to ache again which I think is due to some swelling because of a few nodes in there. I'm sure it'll settle down again now I've started taking them again. I just hope the aching back settles down too - it's been nearly two weeks and it's not as bad as it was but it's not 100% either. Gee, I love being a crock! It's such great fun! (NOT)
Tomorrow, tune in to see if I've blown my up with methylated spirits and a trangia.....

Tiddely pom, the more it grows.....

Ba-blah blah blah.
Hello.
It's 'bye bye' to Xeloda from me and 'hello' to Arimidex as bad, naughty Xeloda has declared itself finished and allowed a wee bit of growth to the nodes in the lungs and lymph. Tut tut tut. But! Bone scan showed *mostly* stable/no big change. However an MRI has been ordered to check if the pain my shoulder is due to the cancer in my spine around my neck and/or the cancer in the bone at my sternum. I didn't really realise that there was cancer in those specific places before today; never wanted to know - but I guess one has to know eventually. If it proves to be this, then there may be some radiotherapy to help it.

So, yeah, not a good day. Could be worse - the growths are small and slow; no rampaging for the moment. And I can't say I'm sad to see the back of the Xeloda - 12 pills a day carefully arranged after eating at the right time and causing the diarrhoea and sore hands/feet - I'm happy to see the back of that. And the Arimidex is fairly side-effect free: hot-flushes (got them already) and aches in hands.... but it's all still a blow. I needed the Xeloda to work for longer than this. I was hoping for more than a year on it. I don't understand how the Arimidex is really going to help - all it does is to inhibit any other oestrogen production in the body - so, yes, it's going to prevent the oestrogen feeding the cancer cells; but, surely if staying in control of the cancer was as straightforward as this, wouldn't this drug have been the one we tried first? It's not exactly sounding like we're using the big guns here. But the only other options is moving onto the old-school chemos (IV) The Arimidex at least means that I only have to go into see the consultant every 6 weeks, instead of every 3 weeks - that's nice. And swallowing a tablet a day is infinitely better than being hooked up to IVs again - although we'll be there in the end.
So, teary day. The thought I can't stand is of having to go through this *every time* a particular line of treatment comes to an end - that's what I can't stand. The shock, the upset - although today was *not* helped by a very large clinic list and having to wait over an hour and a half beyond my appointment time to see the consultant. There weren't enough seats in the waiting room. I was a complete mess before I even got in there. Needless to say - I wasn't totally surprised by the results - I was worried; but no matter what, hearing it is never easy.

I really hate cancer and I really hate having cancer and today I really wished for oblivion. Just for a short time - to not have to feel or think for a while; because I hurt. I am bored of cancer; I'm bored of having it, I'm bored of fighting it - it's tedious and monotonous and *dull*, *dull*, *dull*. I don't want to fight it anymore - I'm tired of it. Just think what I could use that energy for if it wasn't being sucked up by getting up and facing the cancer every day....

::sigh::

Anyway, that's where I am today.