Drip drop

My neck is sweating. Whose neck sweats? I am so gutted about having had to start the Zoladex again. I was so happy when I thought I'd finished in August. That was the only way I got through the summer - by just saying to myself 'only a few more months - you don't have to do any more summers like this'. And it wasn't even a particularly hot summer.
But then the lump reared its ugly head in September and I had to start them again. And the hot flushes are worse again. So bad, that today I actually caught myself thinking that it would be better to die that go through another summer with hot flushes.
Which is ridiculous. I thought immediately - 'that's ridiculous - it so would not be'. I think I sound melodramatic when I say to people that they're going to drive me into a gibbering wreck of a woman; but I really, actually do think that. I really, actually think that one day I'm just going to sink to the ground and bang my head on it over and over again; or just start muttering nonsense. It sounds so pathetic - 'I'm hot' - I'm sure people think ' how bad can it be - it's just feeling too hot' but by the time I haven't slept through the night for *two years* and I continually feel sweaty and sticky and disgusting - it's amazing I can still bear to live with myself. It's amazing that I can string even two words together. I feel like a disgusting creature who no-one in their right mind would want to be near and then combine that with hating the way I look physically and it's amazing I still exist.
Sleep - I used to put my head on my pillow, fall asleep and not wake up until morning. Or if I did wake in the night, then I'd look at the time, roll over and fall asleep again. Now, I can sleep for a max of 4 hours straight on a good night - then I wake up, sticking to my sheets and can still be awake 2 hours later, tossing and turning, going hot and then cold and then hot, repeat ad nauseam. If I get back to sleep then it's usually for no more than an hour at a time. I've been given Lorazepam - which doesn't make me fall asleep; it's a muscle relaxant - so I lay there, relaxed, but hot and awake. Nice.
The best night's sleep I've had in the last year was the night before last when I finally resorted to codeine to get rid of my headache. I fell asleep pronto (I usually lie awake for up to an hour listening to Michael Palin or Garrison Keillor) and then the codeine made me so drowsy that when I woke up, I managed to sleep again - for nearly 12 hours. *12 hours*. I cannot even recall when I last slept that long. It wasn't the best quality sleep and I woke up feeling groggy but, by gum, it was still pretty damn good. Shame I can't just knock myself out of codeine every night. (No, I am not stupid, I shan't be doing that.)
Exciting needle sticking and pamidronate drip today. Thankfully my (fave) nurse in the chemosuite knows how to get into my veins and all was done without unecessary bruising.

I would take a picture to demonstrate the lack of success in the CT department earlier this week but the camera wants new batteries first and I can't find them.

I think I've run out of steam now - but I have written quite a lot this evening - I think wearing my Fussy shirt today has helped the word-stream....

The rain in Spain

Ugh, hate - Xeloda. Messing with my lower digestive system. (Why yes, that is me being polite about saying it's UPSETTING MY BOWELS.) Just the opposite way round from all the other chemo I had, which had the exactly the other effect.
Funnily enough - neither of them is a fun side-effect.
So.
Am nursing lovely cramps and waiting for it all to eff-off.
(Are you listening bowels??)

Haha. How many people can I put off ever reading my blog again?......

How I wish it were the diamond effect.

Head falling off

Argh! Argh! Argh!
My wireless router is not working....I am having to sit, at my desk, in order to access the internet.
This is appalling. Mostly from the point of view that I am so lazy that having to sit at my desk rather than on the sofa alarms me.....

Mother of all headaches today that refuses to shift - you'll have to entertain yourselves today with some Peru pictures of Aguas Calientes and Machu Picchu:

In which our heroine.....chooses curtains

Ooh-kay!
Snaps to April (I'd link to you but you haven't left your url) for her spotting that yesterday was indeed Guy Fawkes Night - or Bonfire Night as we also call it. I've not been to an actual Bonfire and fireworks display for years - which is very disappointing. This year I really intended to - and I really hoped my brother would be visiting so we could go together like when we were kids. But he couldn't and in the end I couldn't be bothered. However our people in neighbouring streets actually had fireworks in their back-gardens which meant I could see them from our bedroom window, in bed. Now that is what I call service - and a good bonfire night. Lots of lovely sparkles and a warm feather quilt....perfect. The Dear Other declares that I would spend my entire life in bed if I could - I fear he may be right. You can knit and read and (in my house) surf the net from bed; so why get up? It's cold outside the covers (except when I'm having a hot flush) - bed is best. Why stand if you can sit, why sit if you can lay down? I don't think of myself as lazy; I just like to be *comfy*.

Today you have options.
For the squeamish amongst you - head further down the post and give me your opinions on curtain fabrics for mah bedroom.
For the unsqueamish amongst you there are pictures - of my scars. In order not to catch anyone unawares you'll have to head over to flickr to see them. They are just (just?) scars now - 2 years down the line - my mets diagnosis in September distracted me from the fact that it was 2 years since my mastectomy. I haven't talked about all the surgery lark for a while now. Mostly because I'm sturdily ignoring the scars as much as I can. I still don't like catching sight of my reflection unprepared in the bathroom mirror. I still have to stop myself from flinching when the Dear Other touches it - he likes the fact that the skin is so very smooth and soft along the line of the scar. I think I care far more than he ever has. ::sigh:: grrrr

Curtains!!!!
The options:









And in close up:
Opinions please.....

Randomness

Yesterday I was commenting on NaBloPoMo blogs with photos that I liked on them. So I thought that today, since I have this new camera and all, I'd post a picture from my walk to the Coop this morning.

This is what Northampton looks like this morning......and this was the nice trees - others look bare and bleak.
Blah.

No wonder I'm depressed.!





Today is also Christmas Cake baking day. Well, it should have been ages ago but I have no impetus for doing things any more. Total lethargy. But, it has been done and is in the oven. The fruit soaked in a mixture of brandy, sherry and a bit of orange juice for 24 hours. I do know someone who soaks hers for 5 days without OJ ;) But this is for our Christmas drinks 'do' at the start of December so I didn't think it was so critical. Besides, some people will be driving ;)
So, what with knitting little mini stockings being knit, it's starting to feel "a lot like Christmas"....ish.

The discrete chemo-taker

Ugh. We went out to dinner last night at the house of some people we don't know terribly well - people from the Other Half's church. And there were 2 other couples there who we didn't really know. Which led to some rather stilted conversation although they were all very nice. I'm just really hopeless with people I don't really know - I can manage a few, but 6 is too many and I just end up clamming up. I'm really just shy at heart.

So, dinner was fascinating - all veggie and dairy-free. We had carrot and ginger soup, then home-made lemon sorbet, then roast pumpkin with a green veggie melange with red pepper and a sort of curried lentil filling plus cauliflower and finishing up with pear gingerbread. I'm still waiting to see how my stomach is going to react to all those veggie - it's been misbehaving on and off recently - usually at 3am - nice (not).

So we got to the end of dinner and I had to take my Xeloda (within 30mins of eating) and I debated excusing myself and taking them in the bathroom, but then I realised that I wouldn't have a glass to put water in to take them so I had to take them at the dinner table - plus I had to ask for a glass that wasn't a wine glass (I wasn't drinking alcohol anyway). Which I did and I tried to be subtle about it but obviously taking 6 tablets with an ocean's-worth of water is a bit hard to do discretely....
So, the chap next to me says 'those look like my pills' and I said 'I don't they will be' (thinking 'I don't think so! Shut up') and he went 'statins' and I said 'um, no, um, these are chemotherapy tablets' which shut him up for a minute and then he went 'they look just like mine' and I made some ha-ha comment about the terrible colours they make these medications, blah, blah. All the while feeling awful. I didn't want to tell this guy, or anyone about them; although our hosts and one of the other couples will know about my cancer from the church - I just couldn't think what to say (other than 'mind your own beeswax!'.) I'm a terrible liar in these situations and I didn't want to not answer because then they might be thinking who-knows-what....
(Dear Other Half suggested afterwards that I should have said they were hormone pills because of my sex-change operation - funny, but I think *not*)

What would you have said? What would you have done? How do you not say 'I have metastatic breast cancer in my bones and lung and I have to take chemotherapy in order to try not to die any time soon...' (No, I didn't actually say that; but I bet that's where his thoughts took him.)

Urgle. Hate.

The next level of insanity

Ha ha!! Don't laugh. I've signed up for NaNoWriMo.....
I fully expect to fail to finish and to write absolute dross but people keep telling me I need something to do - although I think they meant something that got me out of the house ;)

I am, bizarrely perhaps, currently writing something that might be classed as Sci-Fi/Fantasy. Think Elizabeth Moon/Anne McCaffrey.....

I'm not sure I dare post any of it here for fear you'll all laugh hysterically, or you'll simply decide I'm not the person you thought I was and sod off.

Have any of you done NaNoWriMo? Are you doing it this year?

It's funny, people have often encouraged me to write a book - given the number I read I think they thought it was a given that I'd be a writer too. However I've never felt the urge - too much pressure - the old 'getting it right' thing. However NaNoWriMo has given me permission to write total crap. And of course, it's the ultimate in escapism - not only is it getting to retreat into another world/life - it gets to be one that I fashion myself. What will it tell me about myself? That, I think, will be the most interesting thing. They say that when writing, you should write about what you know - but *how* exactly do you do that if you're writing fantasy/sci-fi? The whole point is that it has some strange-ness to it. Although, I suppose, not too much - otherwise we wouldn't read it, we wouldn't be able to relate to the characters or their situations......

Ponder, ponder

Knit-day

I have finally given in, or bitten the bullet or some such and bought a camera capable of taking decent enough pictures to upload here.

Too bad, folks, that means you get to look at knitting examples!!

This here is Mrs Beeton by Brenda Dayne from Knitty. I've knitted about 4 versions of these so far because people keep seeing them and going 'oh, those are nice' in that meaningful tone of voice. This is the second thing I ever knitted on dpns - not bad, eh? I actually like dpns very much - once I got past the feeling that I was trying to knit with a very unwilling porcupine.....

Welcome greeness, pink go away

Oh thank heavens, October is over and I can go back to the more soothing green. Although it's looking a little more pea-colored than I would like - I'm sure it wasn't that color to start with....

I really do wish I knew how to do the fancy blog designing I see going on. I'd like a pretty banner rather than my rather plain, austere, blank heading......any good recommendations for sites that tell absolute dunces how to start this sort of thing??

My plans for NaBloPoMo are a little more ambitious this year. I think I'm going to have a theme for each day of the week (if I can come up with enough) and I'd like to pose you a daily question. It might just be for recommendations or it might be a bit more like homework......beware!!! :)

Watch this space!

Bearing in mind that I thought today was the last day of October and not the first of November; don't expect too much!!!!

Some things are worse than cancer

Argh! October, please end - I want to turn my blog back to a livable-with colour. Pink is yak, yak, yak and I cannot face looking at my own blog at the moment.

Those of you who have noticed this years NaBloPoMo icon on the site will all be laughing at the prospect of me posting every day - since I currently can't get my finger out to post once a week at the moment. Cease and desist - if necessary I'll be posting a photo from Peru to fill the gaps.....there are some goodies!!

In the meantime, if breast cancer awareness is *making* you sick and you'd like to interest yourself in some other cause then I'd like to recommend Kiya Survivors who provide fantastic support and help for children with special needs in Peru. These children have often been abused and don't have opportunities for education in the mainstream and Kiya educate and offer physiotherapy and loads of other things for them. They are extremely deserving and I and the girls I visited Kiya with this summer were blown away by the incredible staff and wonderful, fun, amazing children there. On my behalf, I'd rather you gave *them* support than bought hideous pink things this October.

Yuck - pink

Oh, am late but have Pinked for October, finally.

Am still breathing

BTW - the *previous* post title should be sung to the tune of the refrain from from Rock the Casbah by The Clash. Of course. It just occurred to me that this might not be obvious and that perhaps the whole rest of the world isn't in my head hearing me hum. (Why the hell not!? You don't know what you're missing!)
I'm currently chortling because the last two things I downloaded from I-tunes are 'Somewhere over the Rainbow' sung by Judy Garland and then 'Rock the Casbah' by The Clash. Am amused.

I have been slack and have been hiding and weeping etc and generally feeling sorry for myself and convinced that am dying. Am not, or at least according to the medic types I'm not.

Bad old me has not judged the caption competition - you nearly all chickened out in the wake of Snoskred's quite alarmingly imaginative entry. Sadly, I don't think a single of her suggestions were correct - or perhaps I mean, fortunately..... ;) So I am withholding the genuine instruction card - unless someone begs me for it. There were also valiant entries from Pocketina and Dorothy. All of these did spark and smile and perhaps also a guffaw (fahbulous word, darlink).
So I think all deserve prizes so those of you who email me your address will receive something spiffing in the mail - although I'm not sure what yet. Obviously it ought to be a share of all those diamonds I'm acquiring. Sadly, I'm too greedy for that and I'm saving them to decorate my bathroom anyway.....

Toodles. And get singing along to The Clash!

Doing the ostrich

Sorry, I've run out of good humour this evening.
I did laugh at the entries - and raised my eyebrows - and went 'eh?' in an amused way but tonight I'm full of the panics so I can't quite laugh.
Tonight I have 2 more days left on this cycle of the Xeloda and I'm realising how many questions I haven't asked. And I'm still too scared of the answers to ask them.
I haven't asked if this drug is going to help the cancer in the lungs and the lymph system. There seemed to be much more talk about treating the cancer in the bones and not much reference to the rest so I'm left wondering if that's because there's not much they can do about that.
I'm scared that I'm being lied to - by omission, rather than directly. Or, not lied to; but protected from the full truth of matters.
It may very well be true that this drug can control cancer in the bones for quite a while; but if it goes wild elsewhere in me in the meantime then that may not mean very much.
My oncologist referred to being able to help me get early retirement on ill-health grounds (which at the age of 30 is very scary) but is that an indirect way of hinting that I don't have a lot of time?
The problem to my mind is that if the cancer is in my lymph system then it could be setting up shop anywhere. And I keep hearing the word 'aggressive' in my head; which was how someone referred to my cancer this week - not my doctor, someone else.
I am so scared.
And I'm just convinced that next week they're going to tell me there's no point in continuing this treatment because it's in too much of my body. Which is completely based on fantasy in my head because they've done no new tests; there's no new data. Just panic. Just fear. Just me running out of time.
I'm really angry about being so optimistic last time. I tried to be really positive. I told myself that I could beat the cancer; that I would win. And I believed that was an option. Now I feel like that was total naivety - based on the impressions I had from what people were saying to me. No-one ever said that there was a bigger likelihood of it coming back than of it not coming back and that's what I feel like they all thought. No-one has said it but I feel like a chump for trying to even be optimistic. Because now it has come back; I'm crushed. I'm absolutely shattered by this. And not only do I not want to die but I feel *stupid* for ever wittering on at people about 'if it hasn't come back in five years'. For ever giving other people the impression that I would beat it. Stupid, stupid, stupid.
And I'm still focusing on the little things. I'm weeping over the fact that I'll never have children when I should be weeping over the fact I'll probably die before my parents.
Well, I'm weeping over that too.
And don't tell me to be/think positive tonight - maybe tomorrow - but not tonight. I feel like I can't be positive because I tried that and cancer still came back - and I can not keep taking the blows of hopes dashed.

Guess the side effect

I'm just not feeling like I've adequately expressed the humour I find in my instruction sheet for my Xeloda side-effects; so I scanned them for your perusement and delight:







Now, I'm thinking you should all guess the side-effect from the picture.....
The entry with the most correct pictures identified will have the *very*, real, actual sheet mailed to them for their very own. The entry that makes me laugh the most will receive something else that I haven't decided upon yet. OK?

Go to it!!

My blog posts are better than your blog posts - or are they?

This is going to be a boring post full of banal things like:
"I can't believe I'm doing this again.
It is *sooooo* not fair that I have cancer.
I hate chemotherapy."
And other things that end in:
Whaaaaaa!

And,
Hmmmm, I've said it all.

Whaaaaa!

On a deeper and more meaningful level:
Whaaaaa!

In other news, my brother had the audacity to go and see Eddie Izzard when he was in LA and met him afterwards and then proceeded not to tell me this for over a month. He is useless. That is utterly uncalled for and I'd sulk if he wasn't all the way in Boston and wouldn't know that I was sulking. (For what is the point of sulking if the person you're sulking with isn't living with your sulky silence?!)

Finally, I have a dilemma:
Would it be in poor taste and/or demoralising to other people in the Onc. clinic and chemosuite to wear this t-shirt?

See, it makes me laugh - but I know I'm a bit warped so I thought I'd take advice.......
I mean, in my eyes it is *obviously* a joke but I figure some people might not see that - especially when sat in the chemosuite - nothing seems very funny in there. Apart from pictures of people having diarrhoea, apparently.....and I think that's still probably just me.

Ah, Xeloda!

Xeloda (Capecitabine) (doesn't it just trip off the tongue - I'm sure there's a song with this in it.....what am I thinking of??)
Well, they look like effing orange horse pills (the pills are orange, not the horse) and I take 4 large ones and 2 small ones twice a day starting tomorrow for 2 weeks then I get a week off and then we start again - whee! The absolute best bit is that it comes with its' own instruction booklet that includes a CD-ROM.
Yes, really.
No kidding.
I proceeded to laugh hysterically whilst Megan tried to tell me about the side effects.
The booklet also includes a little chart where you can mark off your pills and also chart your side effects. It has little pictures in case you're not sure what throwing up or diarrhoea is - helpful, eh?!
Truly hilarious - it really cheered me up no end. Plus you can chart the relative severity of your side effects - just in case having them isn't enough.
In the meantime they dripped me full of the bone strengthening drug - Pamidronate - another fancy name. I appear to have one usable vein for cannulas - so that's going to be fun, not.

In more exciting news - my invitation for Ravelry arrived today. Which was a nice cheerer-uper for the day. Now I just have to take lots of photos of things. Which, let's face it, I'll now have time to do - ironic, eh?

And, finalmente, I'll leave you with a picture of Peruvian llamas at Machu Picchu:

karma chemo

Well, Lorazepam has been my sleepy friend for a week now. I discover it's not as effective when I take it at the same time as my Gabapentin. I've been told to stop taking the Tamoxifen which makes me feel a bit scared. Even though the Tamoxifen, which was supposed to keep me 'safe', obviously hasn't done it's job - I still feel vaguely unsettled. Which is mad really because hey, I've got cancer in my bones and lung - OK, it could be worse - it could be a lot worse. But it's still pretty bad.
It's pretty bad.
I'm starting chemo again on Friday - tomorrow. Tablet form this time though - which is definitely good - because I'm fuming that I let them take my portocath out. Apparently if the tablets work then I can be on them 'long-term'. I'm hoping this is a good sign because I was too chicken to ask what sort of time frame I was looking at. But people were going on about 'living' and doing things and stuff so they don't expect this to eat me tomorrow. However, to date, I haven't been renowned for having my cancer in the 'expected way'.
I'm still doing lots of crying hysterically - I can't stop apologising to my partner and family. I feel so bad and so sorry for them. I don't want them to have to go through this; I don't want them to have to watch me fade away when the time comes. I feel like I am a burden - an emotional burden. They tell me to shut up and stop being so ridiculous (in a rather nicer way of course!) but,....I still feel it.
I also feel a bit embarassed that it's come back. I've been going round saying to people that everything seemed to be fine, so far, at this point. And now I just look really dumb.
Time to wail a bit more.

Oh, but thank you nice people, all. I'll get back to you properly in due course.

Outcomes

I went to Norfolk for the weekend.
I got very sandy due to the wind but the sun shone.
I have cancer growing in my spine, hip and lung.
It's small, but there.

Fuck.

And this is apparently not a surprise to the medical team. Apparently it can happen and apparently when they were being positive with me there was a much smaller chance of a good outcome than I realised.

Still not going to die to tomorrow. But....

When things that shouldn't happen happen

Well I've been doing the old see-sawing thing but mostly indulging in floods of tears over everyone I see.
I get a bit scared when people are so nice to me. And that's what they keep doing. It makes me feel like they think I need all the help I can get.
Which I probably do.
Can. not. believe. this. is. happening.

This is not supposed to happen.

UPDATED

Ahhh, crap - I didn't make this very clear. Medical people, nurses etc keep being very nice to me... making me cups of tea, telling me to let them know if there's 'anything they can do' and when I make the polite noises about 'oh thank you, very kind' they go' no, no - just let me know/say'. And I find that eerie - I don't remember it last time and it's making me feel like they know stuff I don't know (which they obviously do). Now it may be because I'm not being quite so stoic in public this time around but I mostly fear that it's because they think I'm on my last legs.

The rest of you can be as nice-as-pie all you like. Preferrably with lashings of 'it's going to be fine'.
Oops, pseudo-in-laws here, must dash

Looking on the dark side

There may have been something about more than one lymphnode today with the Lymphoedema consultant - I'm losing my hearing. People around me talk but I can't really hear what they're saying. And I don't think it's the Lorazepam.

I simply can't be positive about this because I couldn't stand the trauma if/when the result is bad. It's better to expect the worst and have the chance of a better result.

CT scan tomorrow - I've not had one of those before; it was MRI's before.

::sigh::

Fuck lymphnodes

Fucked, fucked, fucked.
Lymphnode palpable; FNA; bonescan and CT scan to come.
The fucker is most likely back. Sure, there's a slim chance that it's not; that it's a reaction to whatever dread diseases I came into contact with in Peru but I'm not holding my breath.

I stopped focusing on it.
I made a deal.
I said that I wanted to get as far as Peru - I didn't look far enough. I didn't deal cleverly enough.
How can I fight this again? When deep in my heart I feel like I can only fight this once. Beating it once meant that it was beatable. If it comes again then that's it - it's eating away at me.

I can't bear this. Please can I just stop living now?

The illumination, the earthquake and the Andes

Well, I'm home again.
I feel like I've been gone a lifetime and come back as someone else.
Someone else with Peruvian alpaca yarn.

Peru was an experience. Travelling with a group of 16 young women was a fantastic experience. Fantastic humour and courage and tenacity. We had illness and tears and hilarious laughter. I had some moments when I wanted to leave and come home; when I didn't think I could manage the responsibility - but of course, I did - we did. We had Peruvian hospitals and doctors; and we had copious amounts of vomit.

I have comforted so many tearful people and exuded empathy and sympathy from every pore for nearly 3 weeks. Guess what? I'm pretty good at that. If you'd asked me what I thought were my strong points before I left I wouldn't have thought to include that. In fact, I think I might have thought that everyone could do that in the way I can - but I guess not. Perhaps that's why I've had so many problems in the world - I truly haven't realised that not everyone can feel/see what others are feeling. I can. But I also discovered that I was stronger than I realised - I thought I would be overwhelmed by others pain - and I was at times - but actually I could cope with it in the moment. I could comfort and reassure through pain and fear. I could see and read and guess fear. I used my knowledge to guess where others felt frightened and I was right. I have skills I never knew I had. And it may have been exhausting but it was good. I said many times that I didn't mind people crying and being fearful and sad - that I would just be there for them and that I wanted to try and make people feel better; or at least, not alone. I think I managed some of that. I think I'm finding where I need to be.

I'm not sure what that's going to translate into but it's a better feeling than I've had for a long time. What I think I felt to be a flawed aspect of my personality - caring what people thought and how they felt - being aware and frightened of sadness and fear and anger; well, I think I now realise that it's an asset. It's something that not everyone has to the same extent.

I just hope this isn't a flash in the pan. Yet another wild dream of a moment (Yes! I want to be a fighter pilot! - No, I'm kidding; I never wanted that. I'm too much the pacifist for that.)

I think I've also come home realising how much I want to be married and a mother. I've been fighting my mothering instinct for a long time and it's not necessary.
I'm quite frightened now I've written that - and I want to shout 'no! no, I don't! It's a lie!'. But that would be the lie. I run away from making decisions. I haven't seen enough of decision-making around me. I've watched a 10 year wait-and-see scenario and I've allowed that to teach me not to make choices. I don't know how I'm going to make some choices but I'm going to have to try.

Done and dusted

Done.
Last hideous Zoladex injection done today by the lovely Melissa (who always does them so very well). It's supposed to last for 4 weeks so *then* hopefully my hormones will start to reassert themselves and I can stop the hot-flushes and all the accompanying, depressing side-effects will fuck off......
In my head I have a little timeline of 2 months. If it's not getting better in 2 months time I'm going to be pissed off.
Please sort yourself out, body!!

Did she fall or was she pushed?

So, I've been pushed. Given a deadline. The bomb goes off and I'm sent out into the world to fend for myself by December. No more talking. The time for introspection, for figuring out myself is running out.

This is supposed to focus the mind and set a goal to aim for.

So why have I cried hysterically over the last 18 hours? I'm amazed at how I am feeling. Like an abandoned child. Stupid for having forged a relationship that I knew was temporary. People leave - I know this; I'm used to being left behind. So why do it? I hurt now and if I'd kept to myself then I wouldn't. If you don't share yourself, if you don't give people access to your personal world then they can't hurt you.

But I do hurt.

No air

Sometimes I just feel like I can't breathe. Like there's no room in my lungs to let in air and no strength to even take in that breath.
Every day I sit here in silence surrounded by my equally silent colleagues and want to scream or swear. I don't like to talk to people any more. I won't sit in the staffroom, and if people ask how I am or say hello then I smile and lie and scuttle off as soon as possible. Hibernation-mode. I don't want to share and wouldn't know how to share the way I feel. Mostly I don't want to share. They'd try to be nice. They'd try to understand and they can't understand. I don't want *them* to understand. I want to be left alone. Except I don't. I think. I don't know.
I feel suffocated. And so heavy.

we

::sigh::
Compression 'garments' really don't go well with hot flushes.
It's currently taking all my self-control - including muttering to myself under my breath - to stop myself from ripping them off before I explode.
Deeply unattractive - just to add to how great I feel about my body, and they itch. Itch, itch, itch.

The following are some things I'm mostly writing down to remind myself. I'm not sure what they are or if they're 'right' - in general, or for me. We'll see.

We are alone in the world
We want meaning, a place, validation
Our identity and reality is defined by our personal beliefs and ideals - we make our own meaning
We cannot depend on others for our validation
We are free to make our own choices
We are personally responsible for the outcomes of those choices - there is no-one else to blame
Choices come with anxiety - fear of failure, fear of death
BUT
We are also free to make new and different choices; to reinvent ourselves

We are the architects, builders and planners of our own lives
"we are the music makers, and we are the dreamers of dreams"

In other news - one more Zoladex injection to go!! Then, hopefully within a few months my body will revert to having hormones and stop having endless hot flushes. I could try and calculate how many I've had in the last two years but the numbers might get a bit ridiculous.....
Say, 15 a day for 2 years - how many is that?

10,950

That's quite a lot.

Any further questions as to why I am a mixed-up, crazy being??

The hand from hell - or Going to hell in a handbasket

Would you be interested to know what the length of referral time to the Lymphoedema specialist is?
You would?
Take a little guess.....

If you guessed 8 weeks then you win a prize! The prize of knowing you're so clever. Yes, 8 weeks minimum. Sadly I had to tell them that seeing the specialist 3 days before I get on the plane to Peru was *not* going to cut it. They have finagled me in to see the therapist this week, which is the more important bit as far as I can tell. I mean, my oncologist has told me it's lymphoedema; what's this guy going to tell me that I don't already know??

It hasn't been a good introduction (if such a thing exists) because having swollen up and then gone down and then blown up again, next thing is that last Thursday the knuckle on my middle finger did the whole red and hot thing and got an infection!! Yay!! Antibiotics here we come! It's looking much better now but I cannot for the life of me work out where the infection came from because I can't see any damage or cuts or anything on it.......still, I'm known for my track record of un-findable infections. They never definitively pinned down the site of the infection when I went neutropaenic.
So. I'll definitely have to be arm and hand sleeved up at least for flying to Peru and probably whilst there too because of the altitude. Although I'm hearing different things about whether that will be a problem or not. Some medical folk say it is, some say it isn't. Hmmm - who to believe? I'll also be carrying more lovely antibiotics, just in case.

I am just so busy at the moment; it's really quite stressful. I've been going around today in a little state of panic. I can't concentrate properly (hooray for chemo-brain!) and I keep starting things and not finishing them or getting distracted every five minutes. Not helpful for work - I sometimes feel like I just can't think properly anymore. It's like trying to grab something in the mist. You know there's something there and you have a vague notion of its' shape and possibly its' size but you can't see it clearly and can't get a handle on it properly.

I'm thinking that I want to change jobs, but I don't know what to. But, I was looking at a job application form today and realised that now; I have to think about what I'm going to put in the disability declaration fields. I think Lymphoedema can count as it's a long term condition that [can] significantly impair your ability to do ordinary daily tasks. Technically, in the U.K. anyway, I've been covered by the Disability Discrimination Act ever since I got cancer. This law means that my employer can't and couldn't discriminate against me, for example, by sacking me or by not allowing me to alter my working hours in order to be treated/recover. I'm also covered in the future too - an employer cannot decide not to employ me because I had cancer in the past, even if I don't have it at that time. This is an incredibly important law. But to be covered I have to disclose this fact to any future employer. Which means filling in those boxes that say 'I have a disability'. Which is pretty weird. because I don't think of myself as 'disabled' but perhaps, given the number of jar lids and bottle tops that I have to get other people to open for me and the number of shopping bags I have to get other people to carry for me, perhaps I am 'disabled'. And I don't like it. The self-sufficient 'me' can't get on board with that.

OK - yes, there was good in there too

OK - that's a good point. One that I was too busy wallowing in pissed off misery to really pause and take note of.
Currently, there appears to be no cancer. This is, of course, fucking fantastic news and I might do better to dwell on that for a while. It just got a bit subsumed in the pissed-off-ness. I am grateful and pleased for that news which brings me within 3 months of the 2-year marker. If I make it to September with no cancer then I officially reach the 2-year, no sign of cancer stage - which is the first hurdle. It will be even better if I can reach the five year marker but I have to get to 2 first.....

Roll on 2!

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!

Tell me who I am

Summer is definitely here - despite almost constant rain for the past 4 days.
But the adverts on the TV that tell me I need silky smooth legs - shaved, or epilated or waxed or depilitated (hmm, most of those may not be real words.....) If I do this then the man will kiss me - or better. And then those legs need to be tanned but I also need to use sunblock (or suntan lotion as we Brits still seem to call it - which is essentially missing the point). So I have to use fake tan as well as my sunblock (why haven't they come up with one that does both? It's probably in the offing). Then I can wear my little skirts and strappy heels.
But for that, I need to lose some weight - so I can wear my swimsuit. But, alternatively if I use a particular brand of bodywash then I'll be so smooth that I can not bother with the weight loss because I can be a 'real woman' or whatever.
Are you confused yet? Well you should be. This is the permanent state of womankind. Unsure of what she is and what she should be. Because all these things tell me that being a woman is not a good thing. I cannot be accepted (not really) unless I rectify these faults - this hair, this weight, my appearance - I haven't mentioned how apparently my eyelashes aren't good enough either. My teeth aren't white enough. My gray hairs and less taut skin are shameful and must be rectified. Are we never good enough as we are? Must we fight a constant losing battle against the expectations of society? Why can we not all agree to give it all up. Why can't we acknowledge that our bodies have hair - they evolved this way deliberately. Why can't we accept that our appearences change as we age. Why is the way we looked at 18, at 20, the ideal when we all know that we are far superior now we are older. Why do we let ourselves be manipulated in this way - why do we assist? If somehow we all could realise then we could act - there are more women than men in this world if we acted together then we could sway these things.
But we're all so different too.

The nitty gritty

Finally, a little breathing space......
I am doing too much - I know I am, but most of it I'm committed to now and I can't get out of it/cut back. I've just got to ride it through and finish them (and then try not to pick up any more!). So I've done my talking (for now) and I've got Guide camp out of the way (yes, my guides made a spectacle of themselves and behaved less well than they could have - fantastic! (not))
So, where am I now?

Peru - one weekend away in the UK to go, some leaders meetings and then, in August - we finally go. Oh, injections, them too - I had my Yellow Fever last week - Rabies jabs start this week - Heps A&B to come later on. Today I go in search of new walking boots so I've got time to wear them in before we go. 3 weeks city walking until Scotland and then a week of outdoor walking there - should get them into shape.

Guides - only six weeks left until school breaks up and we finish and we're doing First Aid for about 4 of those.

So - my 'talk'. It went very well; I was quite nervous beforehand and I'd sat through about 7 presentations on various aspects of breast cancer which hadn't improved my state of mind. What did I say? Hmm, I can hardly remember now - it's as if standing there and saying it to all those people has dulled it all.
I talked about how difficult dealing with diagnosis is - from the perspective of having to take in what's happening but also about how confusing and difficult it is to negotiate the new 'foreign country' of hospitals and finding your way between all the different departments to make appointments and the waiting for results. I talked about how demoralising the treatment process is - about how you lose ownership of your body, about how my body had been looked at and handled by more people in that year than it ever had done in the whole of the rest of my life. About loss of independence -not being able to look after myself; about being 'apart' from the rest of the world; about being the walking embodiment of the potential of death; about being 'marked out' literally and figuratively from friends and family. About how difficult I've found the change in my body and about how people feel they have to right to comment about my appearance. I talked about the invasiveness of treatment - of having my body manipulated and things put into in and taken out. Then I talked about how difficult it has been/is to be without cancer - to find my way back into the world; about how it's not over when the treatment ends; about how difficult it is to live in the memories and to move out of that place. And I told them how having cancer has made me feel like I am hopeless and worthless and untrustworthy.

There was a moment of silence after I finished and then I did get some questions - some good questions like 'what could we do to make the time of investigation and diagnosis easier?' and about how to support people mentally and emotionally using counselling and the breast care nurses. Afterwards more people came up to me and spoke to me - one of the members of Cancerkin who has had breast cancer thanked me for putting into words some of the things she had also felt. Several doctors came and asked me more about what they could do and thanked me for being so honest and 'brutal'; one asked me about my portocath and about what difference it had made to my treatment - he then asked me if I would come and speak at his hospital if he asked me. I said 'yes' but I don't actually think it'll happen. Several people came and asked me if I had acting training/experience because of the way in which I had spoken; so I did have to own up to having studied some drama at university. But I wasn't really using those skills - I didn't need to; I was just speaking the truth in the best way I could, to try and help people to not just understand but also to feel some of what it had been like for me.

I'd like to put up the whole shebang for people to read but I think it's too long for a post and I don't think I have any other options on this site - plus, I don't think it will read as well as it 'speaks'. I'm toying with the idea of 'odeoing' it but I don't have a mic at the moment. Plus, I'm not sure if I want to put it out there for the whole world to look and potentially to take. It'd my story and I'm verging on the paranoid about keeping control of it. I don't want anyone else to claim my words and I don't want anyone else to change them. They are mine. However, if you'd like to read it then drop me an email, introduce yourself (if I don't already know you) and I'll send you the Word doc.

I will, once I have time, be condensing it into an article for the Cancerkin newsletter so maybe that will turn into something more readable - well, that's the plan anyway.

Right, enough for now - more things to do. Remember, even if I'm not emailing and commenting I still think about folk all the time.....be well, be whole, be loved.

White rabbit

You peeps are so nice to ask how I've gotten on and gently prod me to fulfil what I said I'd do. If it makes you feel at all better (no, why should it?) I haven't written about it because I've been rather busy since.
But the short version is:
It went super-duper well although I was a bit nervous and lots of people said how good it was and it got some good questions afterwards too plus a funny comment from a Brazilian plastic surgeon who obviously wasn't listening (or perhaps she was and just couldn't contain herself). Anyway, the blow by blow will have to wait until the weekend - assuming I'm not feeling the ill-effects of my Yellow Fever jab from today - 1st rabies jab next week and probably also Hep A&B - this Peru lark is seriously bad for my left arm.....
I'm seriously behind on my commenting - I have comments in my head - I swear it!
Toodles til later

Tell it like it T-I-is

La la lal alala
Tomorrow I'm talking to 130 cancer doctors from 27 different countries. Yes, I'm not sure why I agreed to that either....
I'm going to tell them that, gosh, having cancer is crap and it makes you feel pretty blue. I'm pretty sure they will have noticed that, which is why I'm going to be whining about the depersonalisation of treatment, the loss of identity, the attempts at trying to live as a one-breasted woman. Officially my title is "The physical, psychological and social consequences of breast cancer; a younger woman's perspective" - wheee! Get me! Speaking at a medical conference! Maybe I'll put up my 'talk' here once I've given it - although I don't think it'll be new to most of my readers! I f*cked up over it because I was supposed to write it a couple of weeks ago and send a draft to the woman who's organising the conference but I just have not had time until this week to really sit down and get my thoughts in a logical(ish) form. But I definitely ballsed up because I should have contacted her to let her know instead of just continually hoping and saying 'I'll do it tomorrow'. I've been feeling *really* guilty about that since I spoke to her on Friday - I hate it when people promise things and don't do what they say they will or let you know that they can't - and I've just done exactly that.....sometimes I really hate how I behave. However, it's written, the beloved has listened to it and given it the OK - I think it's fine - I'm not saying anything controversial or offensive; I've made it clear that it's my personal experience and I think it'll sound pretty good. And at the end of the day I can only say what I know and think - and letting someone else read and criticise it really might have broken my heart. Sadly, I've agreed to sit through the majority of the conference tomorrow - I'm living in fear that I'll hear something I really don't want to hear. Actually, it's more likely that I'll hear lots of stuff I don't understand!!
Keep your fingers crossed for me at 3.30pm GMT (Summer time) tomorrow!!

Talking and telling

Damn it! I want to be able to make pretty things like these.
But I'm sure I'd just make a mess of it. And then get cross and depressed. And even if I did manage it, I'm not sure I'd have the courage to wear it. Or rather, I can see myself putting it on, going out there and then spending the rest of the day being totally self-conscious (HA! I typed 'titally' first time around! Freudian slip, or what!?)

What a very interesting day I've had so far. I was asked to come and speak at an event for the Lavender Trust who were doing info sessions for a major chain of shops who will be doing a great deal of fundraising for them in the next 12 months. I was there to be the 'this is what you're actually raising money for' voice. I didn't do too badly, although I don't think I was as fluent as I would have liked to be and I think I repeated myself but I think I did 'reach' people - people responded and asked questions and I think that's good. That was what I wanted - to make people 'feel' something about the cause. Now, I know that the whole 'pinking' and attention-getting is a tricky area and I honestly couldn't tell you where exactly I stand on the whole awareness wagon but it was an interesting experience. I blathered too much I'm sure; and went on too long too but......my perogative!

In more enjoyable news: massage tonight - bliss; I expect to fall asleep on the spot!

Who congratulates who?

Bloody nora! I'm going to be the last person I flipping grew up with to get married at this rate - and I'm the one who's been with their current partner the longest.....
Two engagements in the last month.
::sigh::
And I keep accidently saying 'congratulations' when I should be wishing them every happiness...

Duly licenced (or will be)

Whew! Finally, some time back again. Preparing for my Holiday License has been *really* intensive. I'm knackered but the girls had a good weekend, everyone went home in one piece, nothing un-toward happened, none of them went under a tube train. The visit from my assesor on Saturday went fine; she signed off lots of things in my book and I was left with a few things for the rest of my team to sign off and my accounts to finish off; which is now done.
The girls went off exploring London in small groups on Saturday; I led a pretty good campfire on Saturday evening and then we did lots of the business-things on Sunday plus devising our own song for a party-piece whilst we're in Peru.
So, once my accounts have been verified I'll be qualified to take Senior Section girls away on Indoor Holidays :) There's some stuff that I would have liked to have done differently but that's often the way and I'm satisfied that I did a pretty good job. I *am* really relieved that there were no First Aid emergencies or other problems. I was more organised and together this weekend than I have been for a long time but it's left me feeling quite strange. I think I haven't quite worked out where I stand on the line between in charge and not in charge. I've spent a long time not being in charge of very much in my life, never mind, in other situations and then to move from that to being totally responsible for the planning and running and safety etc of 20 people for 2 days is quite a jump. And I didn't have a problem with doing it, I'm just finding it discombobulating to come back from it.
It's good that I've managed to do this - I don't feel as pleased as I'd like to; but I do *feel* a little more than I have done about anything (other than fear and sadness) for a long time. It's a real contrast, for example, to how I felt - or didn' t feel - last August when I was singing at the Proms.
So, there you go - that's where I've been for a while - waking up a bit.
And I feel so much better now that the light and sun is back. I guess (for today) I am coming back a bit. It's a bit scary how bad, how sad, how black I've felt this winter. I'm just a little bit scared of it getting that bad again.

Curry

Flipping heck! Thai Green Curry and tamoxifen/zoladex-induced hot-flushes are *not* a good combination.....
I was roasting all last night having had a *small* amount of Thai Green Curry for dinner - and I don't even like it that much so it was so not worth it.....garn!

So, take heed! Don't do it!

Missing you

I posted this in the comments over at Pocketina's - it's an interesting post. I haven't listened to the show - I can't listen to people talking about having cancer. No, let me be more specific - I can't listen to Elizabeth Edwards talking about her recurrence. I'm ashamed, but I still run in the opposite direction when I hear about people with recurrence - I truly am disgusted with myself; I come back again, I get over it (I think). I know logically that what happens to other people and what happens to me is completely unrelated; there is no comparison to be drawn but illogically, I panic and think that if it happened to them then it will happen to me (which of course, it might) and I guess I still haven't really processed and taken on board that whole ' we all die one day' thing.

I was particularly interested by the part that P'ina talks about - the 'missing having cancer' bit and various people have responded by saying - silly question - but I'm not so sure (and I'm mostly copying what I left in her comments field because I want to say this to a slightly wider audience.) I mean, of course I don't miss having a life-threatening disease - I'm not mentally deficient BUT I do miss some of the things that happened/the way things were whilst I was having treatment.

I miss: (::Sigh:: some of these I'm not proud of)

• being cared for rather than doing the caring;
• being 'allowed' to take a back seat - not insisting on 'doing it myself';
• being allowed to slow down;
• not having to do things I didn't want to;
• feeling free-er to say 'no';
• being the focus of my family for a while - the priority;
• people being aware of how important it is to *say* and *show* how they feel;
• being able to say 'I'm not OK, it's not fine';
• the shocking immediacy of everything that made me feel more 'alive' than I had for a long time.

When I say 'allowed' in this context I mean allowed by myself - not others and I know that, somehow, I ought to be able to carry some of this over into the 'now' but it's not really happening so much. And I'm mad with myself for not being able to run at life and grab it and get on with it.

Gosh - y'all were obviously underwhelmed by the previous posts.
I find it interesting that the things I think are interesting posts often get little or no response and the things that I think will float by get comments and emails.
Just goes to show the whole individuals thing!

::Blush::

I'm all glowing and proud to have been invited to write a piece for another site and, now I've seen it posted, I'm even more so because of the lovely words that have been said about it.

This isn't so much of a knitting/crafting blog but I have mentioned it here and there and now you can read more about it, the piece is called Chemo-stitches.

So gazillions of thank you's to Pocketina of DIY, not die, I'm proud to be up there on your blog!

Bodily landscapes

The weekend before my mastectomy I had a little personal event. I needed to mark and grieve and say goodbye to myself as I was - mark that I was going to lose my breast. I decided to do it as a piece of landscape-natural art. Once upon a time, when I still had great dreams and aspirations that I believed could happen, I was very interested in the work of a group of artists/performers called Welfare State International. They did a lot of work with communities, creating relevant art and events but they also did something they referred to as 'Rites of Passage' - creating personal ceremonies or events or moments to celebrate births, deaths, marriages etc. And their work could include the natural environment, it could be sculpture or poetry or anything. So I took these ideas to create my own, personally meaningful rite of passage.

I very carefully planned it out - it was to be a piece of 'sculpture' or rather, a 'piece' - using only natural materials, rearranged in their environment for my purposes but where they could be seen by other people. I thought hard about what I wanted to 'say' with my piece - it was important that it was all natural. I wanted to name or represent my sorrows; commemorate and appreciate the people supporting me and the qualities I drew from them to get through the difficult times; represent an onwards journey and commemorate or celebrate or salute the breast I was going to lose.

The design was a circle of long grass that was bent and flattened into a spiral, there was then a plaited garland of flowers intertwined with cones and berries and seed heads and pods, there were stones and rocks and at the centre a woven unturned basket made from twigs and covered with ivy with feathers interspersed.



The meaning?

The spiral of grass represented life - circular but also spiraling, ongoing and increasing - where I hoped to be going.

The garland was made from long stemmed flowers: rosebay willowherb and another yellow flower - one long stem for each of my grandparents, my parents and my brother. These are the influences in my life and my supporters. I felt that I had been given particular qualities from each of them that were helping me on my way.
Grandad: courage, patience, recovery
Grandma: courage, patience
Grampy: patience
Grammy: bravery, confidence, enthusiasm, the ability to gather people up
Mum: tenacity, determination,
Dad: steadfastness, determination
Brother: generosity
And of course, great love from them all. And all these qualities were represented by the cones and seeds and berries as they represented growth and living, the potential new life within them.

The stones were to represent the sorrows:
My sadness at having lost all but one of my grandparents, my sorrow at not knowing them better, missing them, the sadness I felt for the difficult things they had gone through in their lives, the sadness I felt for my brother's sadness, sorrow for the opportunities and dreams for life that I had let go, having cancer, great sadness at losing a part of myself and of being betrayed by my body and sorrow at having shut myself off from my family and friends.

Finally, at the centre - the woven basket, upturned represented my breast - the vines and leaves showed how it was a living, growing thing and the feathers, the softness of skin and flesh.


It took me two days to complete - the first I scouted round Hampstead Heath for a spot where I was going to create my piece and collected up some of the bits I needed, especially the parts for weaving the basket. The next day I made it. It rained on and off and I got quite wet - I also went bra-less with a low cut top - to flout all that was to come.

When it was complete I took photos and then very resolutely turned my back and left without turning back. I didn't go back to see what happened to it - in my head it is still there.

De-ported

I am de-ported.....hahahahahhahaha

Not funny?

Anyway, the deed is done; the damn thing is removed and I have a handy dandy portocath-in-a-bag souvenir on my coffee table to enthrall all who come by.... :)
Yes, I am that weird - I've kept my portocath. I managed to engage enough brain to say 'yes' I wanted to keep it whilst sedated.....

But, sedation! That's another jolly story! The surgeon and his shadow came by to consent me at about 8.45 (we'd been there since 7.30 - for why? I have no idea) and said 'you don't really want sedation, do you' in that tone of voice that says 'we don't want to sedate you, say no'. I went all blathery and said words to the efect of 'yes, I jolly well do! You bugger!' And he looked *VERY* put-out. And then made me wait until 11am before they did the actual surgery and then they made me wait around to be discharged and get prescriptions for pain-killers until 4.30pm - at which point the nurse said that they'd gone home and only one dr was around and he was busy and that I could take my own paracetamol or ibuprofen if I wanted to go. Which was what I'd been saying since tea-and-toast at 1.30pm......

Still, a very nice anaesthetist sedated me and put up with me saying outrageous things like 'if this doesn't work and I'm aware of what's going on then I'm coming to find you later'....ahhh, threats - nothing like threatening your medical staff for good service, is there? Still, he was game and replyed that I should do that :) There was also a very nice theatre nurse - Ann-Marie I think, and just made me feel better.

I cried again in recovery - it's either something about coming out of that unconscious state or a side-effect from the anaesthetic stuff that makes me cry. I cried before I was even conscious after the mastectomy and I cried this time. I suppose it was also partly that this was the same place I came round both of the other times and I was crying a bit for some of those too.

Anyway, I'm in one piece, stitches come out a week today - I asked him very nicely to do a super-duper job so I'm hoping the scar won't stretch as much as my other scars..... :( It's uncomfy but not *painful* (hey, nothing's painful after taxotere pain and arm cording!) I've been hiding out and sleeping but back to work tomorrow - at home! I love me some short weeks!

Apology

Sometimes I write things here that are true for that moment only. Sometimes I write things and later they are not how I feel - but I don't delete them.
I treat this blog like a diary, but there is a difference - this is 'out' in the world where other people can read it. So, why don't I just write a diary instead? Who do I want to read this?
What do I want to say? I want to say that I'm sorry if I hurt your feelings, I'm sorry if I made you sad, I'm sorry that I can't say these things directly. I have been feeling muddled sometimes and some of my posts have reflected that. And sometimes in muddle I get things wrong.

During my cancer treatment several people said to me on different occaisions that I should write about the experience and I demured. I didn't want to, couldn't - or not at that point but now I have. And as part of that I've discovered things about myself; or, I am.

Warming up the lions and sticking up the v's at cancer

This is my Lion Scarf piece - wot I knitted to help keep the lions in Trafalgar Square warm - raising money for Cancer Research UK.

Stitch and Bitch London and friends across the world have knitted pieces and sewn 'em up to make scarves for all four (large) lions. They were en-scarved today!

My piece is in green, pink and white-y/beige, knitted with three different yarns to make the pattern and then it has a crocheted ruffle on the sides - pretty, no?

Listen again...

Damn it! I may be able to write the flipping thing but apparently I can't copy and paste the right link in to my blog so y'all can listen to it!!
Thank you Pocketina for gently pointing out the slip *and* carefully listening to the other podcasts to find the right one! That's dedication! Especially since all I've been doing is nagging you to do arm exercises.....you can call it ass-kicking but I think it still masquerades as nagging..... ;)

In other news I have finally been on a new yarn binge and started knitting a pair of socks - my first ever go with more than two needles at once and after a day's go at it I'm starting to feel a little less like I'm knitting with a porcupine.....

Argh! They take out my portocath on Friday...why did I agree? Noooooooooo.

Oh - so then I went and posted this without putting in the right link.....I am losing the plot here!
Let's try again:

Ladies and gentlemen, now presenting my essay on the fabulous Cast On, blah blah.....
Episode 36 my friends - starring me (again, not my voice; just my words - just?)

Cast On

Wanna hear a little something I wrote?
Follow the yellow brick road - I mean, the link, to Cast on
Never listened to Cast On? Shame on you! I'm a fan, although I'm terribly behind in my listening which is why I only recently discovered that Brenda had used the piece that I emailed her. That is, by the way, *not* my voice - it's decidedly too other-side-of-the-Atlantic to be me despite my US roots.
My piece is towards the end of the podcast so you'll have to listen to the lovely Brenda Dayne on the way - I promise you it won't be a waste of your time and there's three whole series-worth to listen to if you've some time on your hands. I very must enjoyed the series on the Muses - especially Episode 23 on Urania (I think it was that one) - So listen! Listen to me, listen to Brenda, listen and, as the lady says, "Knit like the wind!".

Another day older

::Happy birthday to you,
Happy birthday to you,
You look like a monkey,
Go back to the zoo::

I am no longer in my 20's - does that make me older and wiser? I wish, I expect.

I've had better days and I've had worse days and I'm mostly undecided about how I feel today.

I have a song to sing-o

La, la la la la.....
What do I want to say - hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm

I want to say 'thank you!' I had some very nice comments/emails recently which I do love. It's nice to know who all those people I 'see' on my stats are. I've emailed/commented back to some of you but there was at least one Anon with no email address so I can't - so 'thank you'.
I know it's OK to still be finding things difficult but I don't want to be still finding things difficult. I don't *like* difficult - I like to be difficult but I'd rather things weren't difficult for me. Hmmm, karma? And I am talking about all this shit. I do. I am. But it's part of the endless refrain: 'It takes time' - time, ha! Who has time? I don't - I had cancer - I have no time. I'm on borrowed and stolen time. 100 years ago cancer would have killed me; 50 years ago my odds wouldn't have been brilliant; 2 years ago I was lucky; for now I'm holding on with baited breath. Living with NED.

La, la la la la......
Hmmm
It's my birthday on Monday - nowadays, a touchy time of the year since my birthday in 2005 was two days after my first chemo - oooh, nothing says 'happy birthday!' like nausea and sickness! Last year - not so good either. Too busy remembering nausea and sickness. Forget, brain, forget!

La, la la la la.....
I have finally agreed to let the surgeon take out my portacath - I have now had my port accessed to be flushed about three times as many times as it was used for chemo. Perhaps time to let it go, no? Plus I don't want any trouble with it when I'm in Peru in the summer and it'll need some time to heal up and settle down again I should think. I was trying to work out why I'd felt so ambivalent about having it removed when I had such trouble with the idea of having it put in. Mostly it was about not wanting to be cut open again and partly the last time I let them do surgery on me I came away with one breast. Which I knew was going to be the outcome, and I know it was necessary and I know it's probably saved my life - but I don't like it and, irrationally, I blame my surgeon for it. I am really angry with him for mutilating me like this. I am literally half a woman now and it is his fault. So, not feeling good about letting him loose again. I have demanded sedation for the removal which is done with local anaesthetic because I DO NOT want to know what is going on; I do not want to be aware of what is going on otherwise I will shrivel up and squirm and then they will miss and I will end up a mess. Irrational, much? So, this time in three weeks it will be gone - just the wound will remain to fade to join the other scars I've accumulated over the last two years.

La, la la la la la aaallalaalla,
That's a skimming of the top of my brain - there's lots more and I should write it down more often.

Haven't we met here before?

It's amazing what a stinking cold and a hideous migraine will do to you. In my case it turned me into a gibbering wreck who, guess what?, was having trouble reminding herself that feeling sick and in pain did not mean that she still has cancer. Well, it was more like flashbacks I think; I just felt like I had slipped back 2 years. Because 2 years? That's when I was waiting....waiting, waiting, waiting. This time 2 years ago I was waiting for the results of my biopsy and ultrasound. And it really has unsettled me again - last year I thought that it was just because it was the first time around; too close and too raw but actually I've felt pretty terrified and unsettled this time around too. Blah blah - only 2 years; blah blah - don't be hard on yourself; blah blah - it takes time; blah blah - everyone's different. Etc, etc, etc. I know, I've heard it all.
And I keep telling myself that progress has been made - that this time a year ago I was in floods of tears every day - great, hulking, ugly wailing fits; not those genteel sobs of films and TV programmes. But now I feel like the sadness has no outlet; like it's solidifying in me and solidifying me into the snow-queen again. She who can feel nothing, know nothing, is nothing.
Ah me, ah my, the self-pity begins again.....

Here today, where tomorrow?

I think the world is swirling around me and I am stuck - stuck in sludge. It stinks, it's uncomfortable, it's horrible but it's known and comfortable in an odd way. I don't want to be here but the unknown, the fear is too great to move. I don't want to talk about this because then I might have to face up to it and I might have to admit that I am holding myself in this terrible place and then I might have to be brave and try to move something, somewhere, somehow. And I don't want to do this. It is too frightening.

And then I feel so ashamed of being so paralyzed - I am lucky, so far. I am not of the people who are facing recurrance, mets - or not yet, anyway. See how I always have to qualify my statements - I don't trust that I am really free. I could be free but I am so busy preparing myself for the 'what if' or the 'might' that I can't see or enjoy the 'now'. And one day my time might be up and I will have missed the freedom, the time I could have had will be gone.....

Green, green, green - it used to be my favourite color

So, have you heard the one about sugar feeding cancer cells; so apparently you shouldn't eat sugar?

And have you heard the one about dairy being full of hormones and fat that increase your risk of cancer; so apparently you shouldn't eat dairy products?

And, have you heard the one about 'acid ash' - foods that make your body 'acidic' and therefore make you get cancer; so don't eat any of them?

And then there are the free radicals (apparently they're not a political party, who knew?)

Then there's the whole wheat - no-wheat dilemma. Fibre: good, BUT - apparently even whole-wheat isn't a whole grain....so, other grains are better, aren't they?

Alcohol? Don't make me laugh! Heard the one about "a group of scientists who analysed almost 100 previous studies [and] found that every daily alcoholic drink increases a woman’s breast cancer risk by 10%"? (Key, J., et al., Meta-analysis of Studies of Alcohol and Breast Cancer with Consideration of the Methodological Issues. Cancer Causes Control, 2006. 17(6): p. 759-770)

Oh, and meat - apparently meat feeds cancer cells too. So, better give that up - and you've given up dairy too so you're heading for veganism now. (not that there's anything wrong with being a vegan in and of itself)

So, what to eat?

Broccoli is about as far as I've gotten. Yum. Endless broccoli.

I get this far and I'm totally perplexed. I can't follow all these diets; I just can't. I'll be miserable and grumpy all the time - and what's the point in being alive if the life I end up with is one where I'm miserable and grumpy?

Oh, and I left out the juicing and seeds, or juicing seeds, or something. Not fruit. Beetroots and carrots etc.

Did I mention the being miserable and grumpy? Because now I feel guilty virtually every time I eat anything - which makes me want to rebel and eat lots of really crap food.

Now - broccoli juice anyone?

I haven't given up yet!

OK - I went away for a while, and then I came back and caught up on my links and Minerva is kicking cancer's ass again. I'm so sorry Minerva - you don't deserve it but somehow you keep kicking ass.

::Good thoughts/vibes:: in your direction.

I remember, and my nerves twang when I remember my Taxotere (Docetaxol) run. In fact, I definitely have more aches since taxotere. Taxotere pain had a nasty habit of settling in places where I already had aches; my hip joints for example. Like it was searching out my weak spots and rubbing its hands with glee at the thought of causing more pain. It was just unescapable. The grand solution for this pain from the doctors? Ibuprofen; and when I complained that that only took the edge off for about half an hour and then I had to wait another 3 and a half hours until I could take something else they suggested taking paracetamol in between. Right. Uhhuh. They even gave me codeine after my portocath surgery, for heaven's sake! Had little effect and in the end they reduced the dosage of the taxotere - after all, the skin on my hands and feet was falling off; my feet and hands were tingling - I couldn't tie my shoes properly, peel oranges, open cans or unscrew bottles; my nails got a fungal infection under them and went orange - very attractive!

But, hey! You know all this. I've said it all before. But it's still there. This is the trouble. I can't escape this - it's happened. I get reminded every day when I see my scar, when I feel the pull across my chest. It reminds me that I have one breast, that I had cancer - and then all the fear and the memories get pulled back into me. How do escape this? Before Christmas while I fretted about waiting for the results of my smear test I thought to myself 'I can't take this anymore; I can't stand it - I'll just stop eating and then I'll fade away and I won't have to feel anything'

Insane. I know. I am heartened by the fact that I thought this while staring out the window on the third floor of my maisonnette which has scaffolding outside it - where I could have climbed out of and three floors is pretty far up... But it didn't even occur to me - which makes me feel comforted; that I didn't mean it. I didn't want to end my life - I wanted to end the fear and the sadness; and that isn't the same thing.

And yes, I have confessed this to my counsellor and she is not worried; so don't you be either. And kindly keep any tickings off and scoldings to yourself. I don't want to hear about offending God, going to hell or anything else, thanks. If that's all you can say then keep it to yourself. Thanks!

In other news.
I have yet again missed De-Lurking week. I keep meaning to; I wish it was in May - May would be a much better month. I hibernate in January. Which is why I haven't really been here. It's like January doesn't exist; after Christmas I seem to be in February before I know it.

I saw my mum for a week. A whole week out of one year. I survived a year post-cancer in a world where I know that life is *SHORT* and I saw my mum for a week. That is so shit. Why am I not just doing what I want? What I feel like? Why aren't I still being selfish and taking what I want?

His nibs won't declare his intentions in Pizza Express. He said so. We were talking about my working and what will happen when I move to the new house in Northampton and I confessed that I was skittish about not being independent - that I felt it was wrong not to support myself and he so sweetly said that we were a partnership and neither of us had to do everything ourselves, we could rely on the other person. Sweet - the man is sweet. I then plucked up the courage to finally ask if he thought it would be legal partnership and he said that I knew he always did things properly (or something like that) but that I didn't expect him to declare his intentions in Pizza Express. Well, no. I suppose not. But, ::smile::, that does sound like there might be some intention declaration in the future. And I'm actually happy to have some warning, as it were.

Today I gave my unstinting opinion on mastectomy bras. So far I have bought all of mine from the same place - a little shop called Nicola Jane with specialist fitters who are lovely and kind. They looked after me so kindly and gently when I first went there - I needed bras for my prosthesis but I couldn't bear to look at lingerie and Aimee picked out things for me and helped me find some that made me feel good about myself. So, this is the second time they've invited me to come and wear-test some of their new lines. They're looking at the fit and the style and how it works when it's worn. Both times I've found it really interesting and haven't been able to resist saying exactly what I thought! But this time the managing director was there and I went through my whole psychology of underwear spiel - poor chap! He was kind enough to give me his card and let him know if I had any ideas or comments.
So I couldn't resist acquiring a few new things while I was there - they were very kind and let me pick out a free bra to say 'thank you' for my time - nice, black, lace, narrow straps. I can't begin to tell you how important narrow straps are - so many mastectomy bras are what my friend Mol would call 'boulder-holders' with enormously thick straps and general nastiness and they make me feel thoroughly depressed - I won't wear 'em. I also bought a fantastic vest top with a built in, pocketed bra - it looks gorgeous - I'm in love!

Well, after that long absence I've gone on a bit - better drop it now really.

Still here, truely

Hullo - I am still here.
I have been debating whether I am going to continue to post here. Part of me feels like it is time to move on a little and that perhaps this is holding me back. In other news, I've been jolly busy since I got back from Christmas: I still haven't taken down my tree. The lights are too pretty! I'm really quite tired after a weekend away with the Peru-trip girls.
Generally, freaking out is still occuring and I am still a heap of misery sometimes. But - I do look back to the posts of a year ago and know that I am not in such a bad place as I was then. I find it very hard to be a few weeks shy of 2 years since my diagnosis. I can no longer say to people that I had cancer last year - no more excuses, no more explanations. And that makes me feel like I ought not to still be obsessing over it in my head any longer. But I am. So there.
Off for dinner now.
Perhaps I will be back in time.

Think of me as sitting on my time-out step thinking about what I've done (or what's happened to me)

T'ra for now!

Christmas

What to say?
I have a Christmas tree, I've written cards, I've made Christmas cake and mulled wine, we went to 9 lessons and carols this evening - I'm booked to fly out to the good old US of A to see my family on Christmas Day and yet I feel totally blah. I love Christmas, I just don't feel much like it just now.

Christmas? Surely it's only October?!

Urgle.
Having a wonks phase and things have gone a bit to pieces. Panic and all that - unwarrented, I believe - but that doesn't make it go away now, does it?
Urgle.

I haven't got time for it to be Dec 13th - Christmas is too soon! I need another month at least so I can do all the other stuff, never mind anything Christmassy. And I need my head not to be imagining the worst about every twinge I have.
Gah.
Urgle.
Pah.

Bah humbug and all that.

Winning and winning

Wow - I was so excited about winning something in NaBloPoMo - mostly because I really was not expecting to. I never expected to get that email in my inbox or see my blog-name on Fussy, so I've felt a little bit bad reading some of the comments on the Winners post on Fussy.
Now, I'm not calling you all a big bunch of whiners - really! I'm not! (That wasn't the great British sarcasm either) And I'm sure most comments were for humour but I did feel a teensy bit bad that some people felt left out. Would I have felt left out if it hadn't been me? Well, I probably would have felt vindicated in my 'I never win anything, the world is against me, I had cancer after all' gray thoughts - but because that's where my doldrum-my life is at the moment I wouldn't have been surprised. Consequently, I am still quietly, excitedly, pleased. And I get a little smile and I do that thing where you raise your shoulders, grin and kind of wriggle....Hmm, that really is a physical 'thing' not a wordy 'thing', isn't it? All I can say is, follow the instructions: try it out and you'll get what I mean (You will! I promise!). And hey, it is just a t-shirt - a super-duper red Fussy t-shirt to be sure - but it wasn't a bazillion dollars, or something....(unless I can sell it on ebay - can I sell it on ebay? NO! Joke. I am looking forward to wearing it, my good self.)

In other news - my oncology consultant says I am 'normal' - I am bizarrely insulted by this - I want to be 'special' not 'normal'. But, on the other hand it does mean that I'm beating back the beast and for that I am truly grateful. I'd sell my soul to the devil for that, I'd sell my Fussy t-shirt to the devil for that. If being 'normal' forever means I can say I played with cancer and won then I'll take it. Thank you Alison! She always reassures me.

NaBloPoMo Results!

EXCEPT......
No! I won a Fussy t-shirt!!
Me, the me who never wins anything,
the me whom I was pretty sure the fates had destined for dismal, catastrophic demise. But no, the Random Number Generator feature in Microsoft Excel was just waiting for me! And very pleased I shall be with my t-shirt - thank you so much M. Kennedy (and the Random Number Generator feature in Microsoft Excel - Excel shall now forever be my favourite Microsoft Office program; except when it arses up my spreadsheets of course!)

So, of course, now I'm saying to myself that perhaps it's a sign! A sign that I am not destined to be sent for rounds of tests at my consultant's apptmt tomorrow. Perhaps the odds are with me! Or, perhaps I just won a t-shirt.
(I won a t-shirt, peeps! Did you know?!)

Eat, drink and be merry

I think I'm worried about the kittens....that's why I still feel obliged to post.

The dinner, well - it could have been better. It would definitely have been better if we'd made sure the vicar and his wife realised that we'd moved before the day of the dinner....whoops! I may have suggested this at some point over the last week. Hmmm. Yes.
The food did not turn out as well as I would have liked - although I did make Panna Cotta for the first time and that did turn out nicely but the Poor Man's Cassoulet was nowhere nearly as nice as the last time I made it.....maybe it was different sausages, but it should have been *richer* tasting than it turned out. I don't know. Pah.

We also finished the moving and Sibi came and cleaned out the old house - hooray! I was glad we managed to get that done so she could clean everywhere; otherwise it would have been us having to do it next weekend and I can think of other things I'd rather do! (Or, need to do) Such as getting set for our mulled wine and mincepie drop-in in a couple of weeks. Argh! Why do I think these things are a good idea!?
Now I have to make gazillions of mince pies.....
Fardles.

I know something you don't know!

NaBloPoMo was *so* worth it!! Why? Well, you'll just have to check out M. Kennedy tomorrow, won't you?
Hee hee.

The day off

Well, I had a day off but it did seem strange not to have to post last night; although after I got back from trying to show guides how to do glass painting, teabag folding and talking to one about her BP Challenge work and several others about DofE service work I was mostly ready for bed rather than posting!
Rushing off to see the house (yay! house!) and cook dinner for fancy folks from David's church. Tell you all tomorrow because the new house is, of course, the land of the deaded DIAL-UP.....urgle.