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.

Lonely.....I'm sure there's a song about that

Apologies for the statelite-link pause in blogging - my laptop was in crisis and lost the ability to run on mains power or charge the battery. Whaaaa! I now have a laptop on loan (thank you!) and am waiting for a new one to materialise - well, be delivered. Soon. I hope. Hint hint delivery people.
It was shocking how cut off I felt without you all!!! You were missed! :)
I'm feeling quite lonely at the moment.
My brother came over from the States to visit me for a week - which was lovely. It's really nice when people come to visit me; it's just as nice to see them when I go visiting them, but it's special when they come to me. :) So we did a bunch of touristy things around London - like the Eye and walking along the river and the crack at Tate Modern and the opticians in Hampstead (What? You haven't heard of them? Huh, who would have thought...) I also took him to the hospital with me and he distracted me in the chemosuite when they were taking my bloods (not too much of a bloodbath this time, which is strangely disappointing) and he came along to my clinic appointment where he met my Oncologist (hello!); I tried to tell him that she could be scary but he is made of braver stuff than me (plus it was a rather unexciting appointment - nothing for me to report and not a lot for her to report - although I did get another tick in my notes - do I get a reward if I get a certain number of ticks? A chocolate brownie perhaps?) I was glad that he came along and saw where I was being treated and met the people who look after me. I hope it made him feel that I was in good hands and made sure he didn't feel out of the loop. I think things can be more frightening when you don't really know what's going on. Plus, he has the ability to make me laugh at all sorts of things. He went back to our old home in Leeds for the weekend and came back with this drawing of a cartoon character he'd invented way back when - Soup-Man! Who swam around in soup and had a straw for sucking it up and a propeller for manouveuring and stirring the soup around - it was hilarious - and such a wonderful example of unrestrained imagination.......
We also went to Spamalot and to see the Japanese Drummers - Yamato. Both really good - but the drumming was bloody brilliant - I was really glad he'd insisted we go (even if I did have a worrying few minutes on arrival at the theatre where I thought I might end up spending the evening in the Ladies!!!) You could feel the vibrations from the drums and it was done with such splashes of humour. We were on the 3rd row so had a really good closeup view - although from the side. So if you get a chance to see them - go like a shot!
But now he's gone home again. And I miss him. And it reminds me that I feel pretty lonely here. Which makes me sad. I end up feeling like I'm making up reasons to go out - so I just don't. What's the point? What am I going to do? Going and seeing galleries and shows and the like on your own isn't so much fun. Does this mean I should go back to work? But the Dear Other doesn't really want me to - then I'll spend less time with him and I'll have to be in London more of the time. Plus, I'm not really feeling like working. But sitting around on my own isn't good for me either. But I have no enthusiasm for doing lots of the stuff I *could* be doing. ::sigh:: Whatever.
It's hard. Life is hard at the moment. It's been worse, mind, but still not brilliant. And all sorts of things are casting their shadow at the moment - I have 2 hen weekends and consequently 2 weddings to go to over the next few months. None of them are mine. Out of all of my friends I am the person who has been with their partner the longest - so how come everyone gets to get married before me? And there's a complicated answer in there; involving the necessity for the Dear Other and I to be living in the same house in the same town and currently that means me leaving London for a place where I know even fewer people and have even less to do at my doorstep; not to mention a long way between me and the hospital and my Oncologist and her team. And I'm not prepared to move away from them - I think they're bloody good at their jobs, I think they care fantastically for their patients, I think they're incredibly patient with me (I'm not known for being easygoing) and why would I leave a top London teaching hospital with big name Doctors for one in a Midlands market-town (which is perfectly adequate, I'm sure).
So, no, I'm not the one in the flouncy dress (not my style anyway - I'd probably be a bit more imaginative and personal. Plus, I currently couldn't wear pretty shoes because my feet would die and fall off - getting married in trainers wasn't quite the effect I had in mind.) Blah - all irrelevant anyway - apart from the shoes bit - I *will* have to wear shoes to go to other people's weddings. Maybe my feet will die and fall off anyway.
What a long and very wingey post this is turning out to be - sorry about that.
BTW - I'm linked to in a Blogher post for my Letter to My Body post - I'm very honoured but I suspect that it's not the sort of thing people want to read. This is quite a depressing blog at times and cancer is a scary topic - I guess I don't blame you for avoiding it - I understand the discomfort and fear that even the word 'cancer' can evoke; but remember, if you do avoid or ignore this blog, you're ignoring me and I'm real and what's happening to me is real and I'm afraid it doesn't become any less real if you don't read about it......
Time to stop blathering now - thank you to all you people out there who read me all the time, through the good and less good and the frankly awful - you're the tops and it really makes my day when you drop me a line or comment to tell me you're there and then I know I'm not so alone.

Woman overboard!

You know how you pysch yourself up to go to the hospital; so you don't turn into a raving, panicking lunatic when you get there......part of what keeps me out of my tree is knowing the people. So when you suddenly have to see one of the Juniors in the Onc Clinic instead of Mme. you suddenly get all into the 'man-the-lifeboats' phase. In case you don't see where we're going with this one - this was me yesterday.
He was very nice, and very thorough - which did freak me out. Mme never bothers with the whole tap your back, tap your stomach, poke your liver, listen to excessive amounts of breathing stuff. But when you're her junior - you do every damn thing on the list because if you miss something you'll be eating your own entrails for breakfast. Or, at least, that's the impression I get....sorry Mme, you're always very nice to me though!!!
So, the result of the tapping extravaganza is that I get the same pill regime - now go away and get them...all that tapping for nought! This is making me think of the Eddie Izzard sketch about finding hidden doors - "tap, tap, tap [ordinary voice], tap, tap, tap [low, hollow voice]" Somehow I think it may work better in real life than on the printed page.
Wheee! More pills! Whoopee! (Why yes, I am an ungrateful lout....)
Had a jolly interesting conversation yesterday about cultural memory. I think I have a rather puritanical cultural memory - I am, apparently, a roundabout descendent of John Howland. So, there you go. Factoid for the day.

Day of reckoning

I didn't know what to write today and that is because tomorrow is Clinic Day and CT results Day and that's pretty much consuming all the space in my head currently. I slept appallingly last night but I don't feel like I'll sleep tonight either.

Tomorrow is also crap appointment-times day. I've got to get there at 9am in order to get my bloods taken in the chemo-suite. I much prefer Megan in the chemo-suite to do it than to go and wait for the general bods in the blood room but that means I've got to be there bright and early so that she can do it before it gets busy (and boy does it get busy later on!). I cannot begin to tell you how much I regret letting them persuade me to have my portocath removed. I should have trusted my instinct, which was definitely scared stiff about having it taken out and then needing it again. But I did it because I thought it would help me to move on - to stop being a cancer-patient - sadly I'm not sure that even worked really. I still have it somewhere - perhaps they'd put it back in for me.... ;) (KIDDING!) Anyway, then I have to wait around until 11.15am for my appointment with the oncologist; but the last two times I've been they've been a doctor short and things have been running *so* slowly and by 11.15am they'll have had lots of time to get behind schedule so I could end up having to wait for *ages*. Which is really bad for my nerves - I also tend to forget all the questions I wanted to ask if I had to sit around. The panic takes up all the room in my head. The receptionist said that if I turned up early then I might be able to be seen earlier; but if I don't get slotted in earlier then I'll end up having to wait in the Onc. corridor for over an hour - and that really will drive me to insanity. Decisions, decisions....

Plus, I'm really hoping that we don't have a replay of the last two prescription-cock-ups. I'll be scanning the sheet veerrry closely before leaving the Onc.

So, if I'm less than scintillating this evening then I suggest that you go and read (or re-read) yesterday's post. Particularly if you're a person of the knit. And, in fact, I'll accept interest from people who aren't of the knit but need a bit of cheering up. Leave me a comment or send me an email (address on my profile page) and tell me why you need cheering up and I'll select 2 additional folk to receive (why, yes, I do like making additional work for myself!) If you're of the knitting persuasion don't feel alarmed - you don't have to knock out 3 grand sweaters to send of - the knitted items can be little things, funny things, anything you can think of really.
So, join the knitty goodness!

The swelling doth swell most every day

I am furiously angry.
My sausage fingers with the squadgy knuckles have been proclaimed 'mild lymphoedema'.
And, yeah, I know, it could be a fuck of a lot worse; but I am still mad. Madder than I ever was about having cancer. I think I thought that the cancer was enough. That having cancer was a big enough payment to the universe to absolve me from any further payments. Apparently not.
So, yeah, Lymphoedema. Fucking fantastic.
In good news - I don't appear to have anything cancerous although I've got some bone thinning from the Zoladex but that should sort itself out once the Zoladex stops - which I reckon is in about 2 months.
Helpfully my notes were lost today and I had to wait for over an hour because they were short a doctor. All in all, not the best day but not the worst either.
Just a really, really pissed off day.
Feel free to join me in pissyness.
Pah!

Brownies and Guides

I like my brownies and guides - honest - they're just utterly exhausting.

Especially since two of the guides are totally at each other's throats. The put-down of the evening is saying that everything is 'ghetto'. Whatever the heck that means......

Brownies are scarily full of energy, guides are totally unable to listen. THE BICKERING!!!! It was just like my brother and I - we were superb bickerers - now I start to know how my parents felt. Sorry folks!

And hey, at least spending 2 1/2 hours doing brownies and guides takes my mind off everything else.

I've been thinking lots about the girl I met who's younger than I am and has breast cancer too - her surgery was on Monday and she was, needless to say, pretty scared and unhappy. I haven't heard from her - hopefully all her family and friends are carrying her along but I hope she's OK. I've been thinking about her all this week.

It's hard because it brings back all the memories of my surgery and that time and it's tough stuff to remember. In some ways I find it harder to remember than it was to go through it. Because then I knew it would end - the memories don't end and they still have the capacity to upset me and I end up with this mantra going round and round: "It's done, it's over, it's just a memory"

But it doesn't help.

They tell me I'm still grieving but I feel like it will never end. They tell me that it's normal but I still feel like a dysfunctional freak. Elaine got quite cross with me when I said that last week - in a caring way - saying that I was wrong to call myself that, that it was normal, that she expects me to find this hard. But underneath all that I still feel dysfunctional.

Ouch - my fingers hurt as I type coz my shitty nails are digging into the side of fingers as I type. I'll be so glad when the rest of them grow out. At least they didn't fall out which is what various people were predicting (haha!) Did I mention that my body is utterly contrary and does what it damn well pleases??

My oncologist called me a 'challenging woman' the last time I saw her and said it was a compliment. I think that's what's got me through all this, to be honest - sheer determination and stubbornness. I like my oncologist very much - she's a challenging woman too and if I'm anything like her then I ought to be OK in life. If I can only find that bit of me and believe in it hard enough.

Elaine says I will get there - I'm not sure I want to. I like being looked after. I like being fragile. I don't want to be the snow-queen, ice-maiden, person-who-does-it-all anymore.

No more.