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.

Sayonara NaBloPoMo

So, this is the last post of NaBloPoMo - I ought to make it worthwhile really but I'm a bit too busy here waiting for the phone to ring. Long story, never mind.

What have I learned from NaBloPoMo - there's a lot to say even when you don't think there is. I didn't get as much posted as I wanted to however - I'd really hoped to finish a bit more of my whole story of last year but it takes so long to write those posts and I have so many other things going on at the moment that I still didn't manage it. I will, slowly, obviously. I don't think I'm going to Holidailies - a brief respite is needed I think. Plus I really need to do things like write Christmas cards and the like.
I also haven't read as much or commented as much as I wanted to - I'm so bad. Bum.
All in all, an interesting experience and good for the discipline I think. It's been good for me to post every day I think and I shall try to make sure I post a little more regularly than I had been doing. So I guess all there is to say is that no kittens died because of me and

Watch this space.....

Sailing, sailing....

I'm watching me some Coast -I do love this programme - it's so fascinating. All about the coast, it's formation, it's wildlife, the people who live around the coast of the UK.

I do love the sea - the sea, not the ocean. The ocean made me very sick when we sailed across the Atlantic in December when I was about 11. On the Queen Elizabeth II, no less.
It was very luxurious but that's kind of beside the point when you can't leave your cabin because you keep vomiting. My brother spectacularly threw up in a potted plant as well as over the side. I just threw up in the cabin - I was obviously practising for chemotherapy.... Wow. That is so odd - to think of myself as that child and to know think that that child was going to get cancer. My dad didn't feel so hot either. On the other hand, my mother, who loathes flying, was perfectly fine and enjoying herself. She was known to come back into the cabin saying things like 'the waves are coming up to the top deck!' - really? Well, that's exactly what it feels like - funny that!
It was so rough that the first night out of Southampton they had to empty the water out of the indoor swimming pool because there were waves *inside* the ship.....
Ick.
The dreadful thing was the fact that you couldn't escape it. It's the same with all nausea, I know - but it's so hideous.

Enough

What to say today, what to say.....
I had some very sweet comments, which I wasn't fishing for, and I certainly wasn't criticising the few of you who do stop by and comment. But there are a lot of *other* people who, I can see from my stats, don't stop and don't comment.
But anyway, enough of that....

In fact, I have nothing to say today - I am too sad to hear about Laurie and the whole issue with my guides has blown up again...

Plus, it's my 3 monthly consultant check-up next week and I'm anxious. The phantom discomfort in my right leg is preying on my mind.

Enough. Enough. Enough.

The big 100

Hey, yesterday was my 100th post!
I didn't even notice!
Howzat?!I didn't even know until now that there was a "Colossal Meal Replacement Bar" called the Big100 - but now I do! And so do you!

Actually, I didn't even know there was such a thing as a "Colossal Meal Replacement Bar" - and I'm really impressed that it's colossal.....I'd hate it to be all minuscule! ;) It's too bad I shall never be a muscle-bound babe now - no weight-lifting for me - all that lymphoedema fear and caution, you know.... So, I'll never have occasion to eat a Big100 - shame, they come in tempting flavours too: Apple pie, cookie dough, graham cracker - don't you just want to be a weight-lifter type person now?

Actually, to digress, that's one of the things you can't get in this country: Graham crackers (or plain Cheerios, or Annie's Mac 'n' Cheese - or Bernie Bunny as we refer to it in our household) Seems so silly, doesn't it? I also miss serious ice cream flavours - black raspberry, maple walnut, peppermint stick....mmmmm - yum. Also, no one here knows what jimmies are. And you can't get a raspberry-lime rickey. I must stop now - I'm getting a sugar high without having even eaten these things......

mmmmm - ice cream - what's your favourite flavour?

Love 'n' stuff

Well, well, well, (the three holes in the ground...) 5 days left to the end of NaBloPoMo. I think I'm going to make it - they definitely haven't all been terribly scintilating posts; but I have got into a bit of a habit and I think that's a good thing: even if I'm talking to just about no-one.
People whizz by but don't stop - I'm not surprised; it's not a thrilling blog full of my exploits; it's not a 'baby blog' full of fuzzy photos and it does include the word 'cancer' fairly prominently on the first page which does tend to scare people away.
I don't blame people who run away from things cancer-related. Cancer *is* scary - we're all afraid of it really, I think. It's something living in us; threatening our very being and we aren't even aware that it's there for a while. If that isn't scary then I don't know what is. But we exist - people with cancer, people who've had cancer - we exist; and that cancer is part of who we've become and it's hard to ignore or pretend that it isn't. So. I'm not hiding it. So. Think a moment before you run away.

In nicer news - I got to do mass baby-cuddling yesterday - bliss. And I got to feed her. She's very bonny and so talkative! All these funny noises; grunts and things - sweet! I hadn't really noticed that in previous baby-experiences. Ooh, she's a clingy little thing too. She won't sleep unless she's held and ends up sleeping on her mum most of the night. I'm so excited to think that I get to see her grow up.
::blissed out::

Buy Nothing!

Ooh - today's post early!! Don't get discombobulated! Since I head off back to the land of DIAL-UP again shortly I thought I'd post now - much more civilised.
Today holds a trip to that bastion of Swedish design - yes, IKEA.....
We need to order more kitchen parts since they've skimped on the number of cabinets and the like in the kitchen - V. POOR!
We also need to head to John Lewis for a new TV - the old one has finally kicked the bucket. Or, rather, is driving us mad with its turning itself off repeatedly and having a picture that resembles a striped deckchair. Bye bye TV! Do TV's have a happy hunting ground??
Oh, and I do yearn for a new, fantastic, enormous bed....ahh, space while I sleep - bliss....
All of this on 'Buy Nothing Day' Whoops. Perhaps we'll just look.

Oh - and it's a playing with babies day - yay! I get to meet my best friend's daughter for the first time this afternoon - she's 3 weeks old....more bliss.

Have a happy (non-shopping) day, y'all

My grammy

This is a belated 'Happy Turkey-Day' to all out there who celebrate. I haven't really this year, what with the moving and all that....

It's also a year since my grammy died - on Thanksgiving Day last year.

She was a fantastic woman who I had great respect for; she had a real sense of adventure - she had a boyfriend who let her fly his small plane; she travelled in England and Scotland on her own a great deal and made friends as she went. In photos of her when she was young she was really beautiful. She wasn't scared to try stuff out - she worked in a hairdressers at one point and she was an operating room aide at another point. She loved little kids and whereever she went and saw kids she could attract them - the babies would smile and stare at her, mesmerised. She was a fantastic grammy - she loved my brother and I very dearly and would always bring us Cheerios when she came to England (you can't get the plain kind in the UK even now!!) and she'd send fantastic Christmas parcels with books and toys. But she would do fun stuff with us too - we always used to go and feed the ducks down at Winchester Centre and she'd take us to the library and to the Science Museum or the Chrildren's Museum in Boston. And when she came to the UK she loved to visit York - especially in the Spring time when all the daffofils were covering the banks. It was so sad when the Alzheimers took her over and changed her - she kind of slipped away and it was easy to forget that she was the fantastic person that she was. I miss the woman who always introduced us by saying 'The British are here!' and showed us off to all her friends.
Grammy, I miss you.

SLOW!!!

Argh!
Dial up! It is slow! I am going insane! It takes minutes to load webpages! Broadband and wireless - I miss you so......
The moving, it did go fairly smoothly....we are in - there are boxes - there is not enough space for all my cooking things in the kitchen. I already miss the kitchen that I designed myself. We can't figure out the timer on the boiler - strange. And the shower is even stranger with one tap working both the shower and the bath depending on which way turn it - bizarre, no?
We went to the pub for dinner and I cried - isn't that interesting? Me, crying? My word - because that never happens....
Pah.
Must toodle now or the dial up will turn me crazy (er)

Crap post

Argh! I left home early to come to David's thinking I'd use his computer to post and publish the last Elib question but it doesn't work from his Mac - at least, I think that's the problem. I am so bolixed!
Damn and blast!
Plus I've just spent flippin' ages working on the flippin' question!
::sulking::

The great move has begun and most of downstairs has been moved to the new house already. It's looks much bigger with no furniture and books in it! Perhaps that should have been the solution - no belongings!!

This is short and sweet because it's late - it'll probably be short and sweet tomorrow too because it's back to dial-up (OMG! Dark-ages! Broadband, we love you! And wireless! Don't forsake us - please get connected quickly!)

Llama stamp

Here is a Llama for your delectation. Can you tell I have Peru on my mind?
Amongst other things of course - like moving on Thursday. I'm excited, my poor other half is now exceedingly anxious....

District nurses

After my little run-in with febrile neutropaenic sepsis I had to delay my next chemo treatment by a week, to give my body a chance to get my white blood cell count up to a safe level.
At my next clinic appointment my consultant decided that after the rest of my chemo treatments I would have G-CSF injections - they are a growth factor that stimulates the bone marrow to make more white blood cells; which, of course, are one of the things that the chemo kills off, leaving you with little protection from infection. So, for five days on the week after my chemo treatment a district nurse would come to my house and give me a Neupogen/filgrastim injection. The district nursing system is a fantastic thing. I paid nothing for this; I would just telephone the DN office or the nurses from the chemosuite would send them a fax with the dates I needed the injections. I would be given the prefilled syringes to take home with me after chemo along with my pile-o-drugs - also all for free. And they would live in my fridge - they had to be kept cool for the week and I had my own sharps box for the syringes which lived under the sofa (of course!)

So, the first Monday morning after my second round of chemo, Mark turned up. Mark was a very sweet, Scottish (I'm a sucker for a Scottish accent), male (in case you hadn't noticed) district nurse. And he was a sweetie, made me feel much better. Asked about how I was feeling and did the injection for me. I point-blank refused to do them myself. Various people kept telling me I could do them myself. My reply was that if I wanted to stick needles in people I would have gone into the medical profession and that there was a reason I went into libraries. I didn't see why I should do them when there were all these people who had been trained to do it!

So I had a lovely mix of nurses over my six months - a couple of great New Zealanders; Ema who just made me feel so much better on one of the days after Taxotere when I felt like I'd been beaten black and blue with a baseball bat and was practically in tears with the pain in my back and numerous others.

I resolutely never looked when they did the injections - which went into my abdomen. They were always quite uncomfortable because they would sting as the liquid went in - the needle prick didn't bother me so much as that stinging did. It was always interesting to see who was the best at giving those injections - I definitely used to be pleased when one particular nurse turned up because she was brilliant - I don't really know what she did differently but I would barely feel a thing when it was her. I liked having the district nurses come because it made me feel a bit safer - that there were people who knew what was what seeing me at the time when I was most at risk of the neutropaenia coming back and I suppose I felt that if there was any problem then they would recognise it and send me off to the hospital.

The other outsome of the neutropaenia was the strict instructions to use Corsodyl mouthwash several times daily to prevent ulcers or cankers or other sores in my mouth. This stuff is weird, I was given the mint flavoured variety and after the first taste I just thought, mint. After I spat it out I thought, ooh, zingy and then I thought 'yuck' - It seemed to mix strangely with the vile taste I already had in my mouth and made everything taste even more peculiar - including water. So, I was really unwilling to use it: but I did. And the only time I got a mouth ulcer was when I didn't use it for a few days because I had run out. I started using it pretty sharpish after that and was very grateful not to have anything worse go on with my mouth. To be honest, the bad taste was so horrible I was glad not to have any further complications. I just felt like I was in a permanent state of feeling like I hadn't brushed my teeth for months, even if I'd just cleaned them; and nothing tasted right. Everything just tasted strange; I stopped drinking tea and coffee: I just didn't fancy them - they didn't taste good enough any more. Chocolate and sweets went - sugar seemed to leave a really horrid aftertaste in my mouth - probably why I lost weight throughout my chemo treatments. If only I hadn't put it back on again. And I stopped eating cheese because someone told me I shouldn't eat things I really liked while I was having chemo because it would put me off them. Funnily enough, I don't really eat cheese at all now and I used to eat it by the bucket-load.....well, quite often. And no, I haven't given it up because of the whole 'don't eat dairy, it gives you mucus and cancer' thing. I just got out of the habit.

Anyway, so that is the story of my lovely district nursing team - thank you, y'all!

We have them!

Tis done. We've selected and met and told our girls - you could probably hear the shrieks of joy from them whereever you are!
I am exhausted, they are exhausted - they were up until gone 11 last night doing activities and then they were hauled up again at 6am this morning. We were running activities until 11 last night, then we had to de-brief those sessions and touch base on today's activities so it was 12 by the time we were done, 1am by the time we got to bed and I dread to think what time it was by the time Sarah stopped talking..... Bless her, I love her dearly but she is a real night owl and I am easily led astray except I haven't got the sticking power or the stamina to cope the next day. So I am ready for my bed.....
They're a nice group - when I saw the list I was happy straight off with who we had on our trip. They'll all be at least 15 by the time we go and they've nearly all had some international experience before. So, that's reassuring for us - I swear, some of them have more experience than me!
I think they'll gel together as a group fantastically by the time we go and they'll be in floods at parting when we get back. It was so interesting to meet the international groups from this years trips on Saturday - they were so much more confident and grown up. You could just see the differences. Our girls will learn so much from it - I wish I wasn't so scared about it all.
Must sleep - have to work tomorrow!

Peru selection

Today, today, today....
Today is the day I meet the girls we're taking to Peru next summer.
I am running late, so if I'm not careful I'll miss the bus and then miss the train and then miss the start of the GAINING training.
So, t'ra - cross your fingers for a group of nice girls for me!!

Down we go again...

I skived off work today. I was tired and sad and I finally gave in and didn't make myself go to work. I don't think Elaine will approve. But I thought - I'm tired and I have an involved and busy weekend ahead - I'm not going to be fit for anything if I start tired. So I justified it to myself and stayed home. In the afternoon I went back to bed and had a nap. It was odd - I haven't been in bed like that since chemo-days. I have to say, I have a funny relationship with bed now - I do remember and associate it a bit too much with feeling sick, with being sick, with being in pain,... with having cancer.

And at the moment I am feeling even more consumed by the past. It is a about 2 weeks short of a year since I finished my treatment for cancer and I am acting like it was yesterday. I feel ashamed that I am not 'better' - not a better person for not being able to put this down and get on with life. Like a part of me is hanging on to this. But I do feel so sad - you know, that stomach-aching sad; that bottomless pit sad; that weighed-down sad.
And I have to get up at the crack of dawn tomorrow to get to this selection weekend and I haven't finished packing - I have done some, which is good, but not all.
I don't think I'm ever going to feel better.

Stayin' alive!

Apparently, 'if I knew who walked beside me, fear would be impossible' - sadly this just sounds vaguely threatening to me - as if I were being stalked....
But I would debate this - I think fear is one of *the* most human traits. It's part of our animal nature and I don't think it really disappears because we have a belief in a god or other spiritual being. It's an instinct - and I don't think they can be governed by the logical mind.
Am I frightened? Yes, of course I am - but what does that mean? Well, what am I frightened of? The cancer coming back; dying; not getting to do all things I still want to do; my family and friends being sad; pain; having to go through all that treatment again. Why is all this frightening? Well, it seems to me that it is proving just how strong my instinct to stay alive is. But it is instinct - not logic.
I spent far too long today grokking out on Laurie's blog. I just got sucked on in there and was reminded so many times of what I experienced. It's very bad - I shouldn't do it because it confuses me. I get muddled about where I end and where other people's stories begin. A very strange trait I feel.

This is all very dull - I feel it may be time to stop the waffle.
I'd like to say it'll get more interesting over the weekend but I fear it won't (Well, it will for me because I'm going to meet my Peru team but it will mean short and sweet posts late on Friday, early am on Sat and curled up in a comatose heap late on Sunday - never fear! I'm not letting NaBloPoMo get the better of me!!!)

Air and share

I read M. Kennedy's 'Pep Talk' earlier today and blithely thought 'I'm not having trouble thinking of things to write' - but now I've sat down to it; actually, I'm not full of ideas.

I've been looking at my stats recently and I am saddened by the number of people who come to my site by searching for information about portacaths. So many of them stop by and read a few pages and then disappear without commenting. And to each one of them I want to be able to say 'I'm so sorry' that you're in a situation where you need a portacath. I don't want people to have to go through the kinds of things I went through andI wish you would say something so I could know something about you - because otherwise my imagination fills in the blanks.

I 'met' another BC blogger today - Laurie - and I flicked through a few pages at the start of her blog when I wasn't working today. And, as so often, reading her diagnosis story reduced me to tears. And I was interested that she, like me, had written a post about what and what not to say to someone with cancer. I suppose it's not that surprising - it is hard to say the right thing and sometimes there isn't a right thing; but.....interesting. As I say to people I meet who've had breast cancer - I wish I didn't have this in common with you; I wish I hadn't met you because I wish that neither of us had had to go through what we have. But we have. And I'm very grateful to Kim for her comments and her insistance that I am a strong person. I find it hard to see that because I'm the one wallowing in my own head; and I am wallowing at the moment, I am overwhelmed by myself and lost in myself. I'll get out of it - I think Elaine's hope is rubbing off on me; I really do believe I will - but I think it's going to take a while.

The cat-fink

Urgle - it is late - I had County meeting at which I did not distinguish myself. But at least I got a lift home and didn't have to muck around with the tube and the bus.

SO - tonight you get a picture post - you may not want to know what I had for lunch but you definitely want to see a picture of the cat, right? No? Tough!

What a sweetie, right? No! He is a fiend who will lurk under chairs, on sofas, on stairs and suddenly attack. He is your ankle's worst enemy. You have two anyway, so you can donate him one, OK?
He is the terror of cardboard boxes, which he shreds into a state of collapse.
He adores the printer and likes to stick his paw into where the paper goes in because there must be something good in there to be making those noises.
He is also a huge Creature Comforts fan - he races up to the television and stares at it, entranced when we put the DVD on.
So, I present to you - Maxwell the cat-fink!

Proms

De voila!
The Royal Albert Hall.
I've sung here.

I never got round to telling y'all about it though - what a zizz eh?

I not only sang here, it was for the Proms and it was a premier.

Get me, eh?

It began when a friend forwarded me a link to the Beeb site asking for singers to apply for something called 'The Voice Project'. They were looking for London and Glasgow-based amateur singers to take part in a collaborative performance with The Shout of a new piece by Orlando Gough.

I filled out the form and didn't expect to be selected - but in the end I received an email inviting me to take part. I was very excited; especially since morale was at a low level then (what, as opposed to now, you mean?)

The rehearsals started a month before our proms (we did 2 concerts) with a weekend workshop with 3 members of The Shout: Carol Grimes, Adey Grummet, Melanie Pappenheim; and they were great - really fantastic.
They not only had incredible voices but were really enthusiastic and innovative in their singing. And what was really exciting for me was that I had met and worked with Adey Grummet before: at an Opera North summer school when I was 15 - and she was just as energetic and entertaining as I remembered her. She was also very kind when I went up to her and rambled about how she wouldn't remember me but we'd met before and I'd really enjoyed working with her then and now. She was kind enough to say that she thought I looked familiar - I suspect that may have been a kind white lie; I think I look quite different than I did then - curly hair and all....

The piece was really interesting and very compelling as well. I was part of the 'London Rabble' and the parts we were singing were mostly nonsense/made up words with a vew 'verses' - the choirs were singing the comprehensible parts with The Shout filling the solo/small ensemble sections.

The Shout were utterly fantastic to listen to - they did a couple of other pieces during the concert and I was just enthralled to listen to them - one of the pieces 'Stand' was just *brilliant* and I had it running round my head for days afterwards - I woke up in the night with it running round my head. I would love to sing like that; as part of something like that.

It was quite a bizarre experience being in the Royal Albert Hall - people who had sung their before kept saying how huge it felt and how seeing that many people could be a bit unnerving so I was quite surprised when my reaction to standing on the staging and in the promenading space was that it felt a lot smaller that I expected. So I thought that maybe once it was full of people - then it would seem bigger - but no, it seemed smaller again once there were audience in it - it just brought the levels and layers closer down towards me. I wasn't nervous, I wasn't freaked out; but neither was I excited by it. And that is a big sign for me that I am obviously not really 'well'. I ought to have been excited or proud or happy or at least faintly pleased - but I just wasn't. Perhaps that's why I haven't written about it before now. I felt 'dead' - like I do about so much now. Like I've never come out of the anaesthetic - I'm still numb.

How I've changed

This picture was taken the day after my birthday last year. Two weeks after I had been told I had cancer and 3 days after my first chemotherapy treatment. In that time I had cried, been sick, barely eaten, had my hair cut (it was down past my shoulders before).
I look at this photo and I see the tiredness in my eyes; the 'deadness' - it's like I'm not there. And although, at this time, things were tough - I had no inkling of just how tough they were going to become. Or, indeed, how much sicker I was going to look by the end. I don't have many photos of me once my hair came out and I started to look really ill - really like a person with cancer. By that point none of us really felt like taking pictures - we didn't want to remember that time; we didn't want to be in that time.
Today as I type this - I am sitting in exactly the same place in my flat, with the same blanket over my knees. What's changed? A lot, a little, nothing? All of the above? Probably.
Some things have gotten better, some have become worse.
I loved this haircut and I wanted it back - but now of course my hair is different again. I can't keep up!

Lack of pictures

Today I am attempting a knitting post - if I can get the blinking pictures off my miniscule and rather pathetic camera, that is.

OK - so that is what I was going to do - but the computer refuses to find the camera - I loathe you, computer! I wish you to know this - ::deep loathing::
And I was going to show you the sweet little baby sweater I've just about finished - it's just waiting for a zipper since I decided I didn't like the toggle button fastenings from the pattern. It has a hood - very sweet. And is destined for Ffion - my best friends 2 week old daughter; who I have yet to meet since she's all the way away in Wales.... :( Hopefully I'll see her before Christimas though - I do want to see her while she's still little. I missed her birth by a matter of days since I was visiting the day before my friend's waters broke - Ffion decided to make an early appearance - by two weeks. She's obviously a performer, like her parents! ;)

Ah well, that's it for today since I've been scuppered and have wasted all this time faffing around with the camera - it's bedtime and then some!

Night night

November holidays

The fireworks are going like mad again even though Bonfire Night was last weekend - they seem to have been going on for weeks because it was Diwali a few weeks before too. I like fireworks - I have fond memories of Bonfire Nights at the top of the garden of some friends. Fireworks and sparklers and hot soup and baked potatoes in the fire and sausages in buns. Until they moved away, anyway. Then we used to go to the public display at St Chads and have chips from Bryan's Chip shop on the way home - my fingers would be freezing because I'd taken my gloves off and the chips would be boiling hot and burn my mouth. And I would tuck one hand round my dad's arm which would keep in a bit warmer.
The bonfire would be built of old branches and old bits of wood or old doors or planks or, I remember one year we burnt an old desk. But before you lit it you would always take the bottom apart a bit to check for hedgehogs who like to snuggle down in the pile of wood and would get burned alive if you didn't scare them away - poor things.

It's amazing how loud and bang-y the fireworks seem to be now. Sometimes when I hear them just for a moment I think it was a bomb - especially living in London, you worry about these things. And I wonder if this is a tiny bit what it was like for my grandparents living through the war. Banging and flashing in the distance if you were lucky - rather closer if you weren't lucky. I wonder if my grandparents ever felt entirely comfortable with the experience of Bonfire Night after the war. I remember my grandma getting rather upset when my brother and I watched whichever James Bond film ends with the massive fight in the submarine bay. My grandma spent at least 2 years of the Second World War without hearing from my grandad who was driving around the Middle East and was injured. I mean, can you imagine that? Not hearing from your husband for over two years and not knowing where he was or how he was? I find it mind-boggling - I have so much respect for the men and women who lived through that time and I am so grateful that I do not have to go through that.
Don't forget tomorrow when at the 11th hour of the 11th day of the 11th month we will be silent and remember those who did not come home to their families; to their wives, to their children, to their friends.

Green grow the rushes oh!

p.s.

How do you feel about the green? Too much green?
Green is my favourite color and I'd love a verdant, leafy look to my blog but that would require knowing a heck of a lot more about this blogging lark than I do. Maybe one day when I'm not doing a trillion and one other things I'll work it out......

SO, green, comments please.....

Tears before bedtime

It's been one of those days where tears before bedtime are inevitable. Or in my case, tears before dinnertime.
Still grieving apparently.
It keeps catching me by surprise. I keep thinking I'm done with the crying and then it starts again. I keep thinking I've accepted my lopsidedness; my scar but then the grief gets teased out and the tears come again.
I think I've finally found my anger though - I'm left being angry with the cancer because there is nothing else to be angry with. How dare it come into *my* life? How dare it take *my* breast? How dare it grow in *my* body? And it will never be gone - even though the growing cancer has gone (I hope) - its repercussions and its memories will never be gone. I cannot define myself without it. You try it - you try looking at yourself with a scar like this - or any major scar. For better or worse, it's you and you (I) have to accept it and you have to get on with living life - but you don't like it, the whole way you feel about your body changes. I don't like the way I look, I don't like the way it feels to have one breast, I don't like the diagonal scar - although it's as smooth as silk after all bio-oil it's had put on it. I don't think I'll ever be comfortable - I think there will always be an underlying hatred of it, and it's hard to hate yourself.

In other news, want to see a picture of the new house?
This is the back of the house. Doesn't look like much really, does it? But it is nice....I promise. More pictures when we get some furniture in it.

Why I smell of chlorine

Today I was very good and went swimming. I was less good when I ate a lot of cookies - which mostly tasted of cardboard anyway....

It's a shame that I'm not a better swimmer because I am a bit of a liability in the pool. I am one of those wimps who doesn't like to put their faces in the water - I panic. Guess what!! Something else I'm fearful of! Drowning at the swimming pool! I'm a challenging woman! (See! AJ was right!)

Fortunately I managed to go in the middle of the day before it got busy and/or full of kids swimming lessons. Unfortunately one of the people there was one of those terrible splashy-crawl swimmers. Poor style!! I shouldn't comment since I mostly do a bad breast stroke or a frantic doggy-paddle - but at least my swimming style doesn't cause other people to end up choking on my wake. Grrr.

I hate water up my nose and down my throat and I really haven't got the hang of it.
I can't help it, I come from a family of reluctant swimmers.

My one memory of swimming lessons as a child is in the very baby pool at Holt Park and as far as I remember we were just striding across the pool - water at thigh-height.

It obviously was of limited success. I gained my 50 meters certificate at school and that was an effort. And I'm still not the most confortable of people in the water.
Plus, I now wear the most blah swimsuit ever - black, polyester, high necked, low legged, tummy control. Because of all the pockets and lining for keeping my prosthesis in place I feel like I'm in a strait-jacket or an iron suit (whatever one of those is...)

This is obviously not me and the snazzy beach background takes away from the drabness of the suit itself....it's streets away from the turquoise, flowered bikini that I used to wear (topless) when I worked in Chania. Just another thing that breast cancer has taken from me, besides the pound of flesh. Well, several pounds-worth I should think.....

So, in an effort to improve my swimming, I bought a book. Stop laughing. It's not that funny. Yes, I bought a book in order to get some swimming tips. No, it's not waterproof; no, I didn't take it to the pool with me.
I know it sounds silly - but it's called "Swimming without stress: lessons for land lovers" - sounds like me, yes? And it's based on Alexander Technique; which sounds good to me and it's about being confident in water and releasing and swimming without tension. Sounds like just what I need.
Sadly, I didn't get on well with my attempts to practice breathing into the water. I fear I may actually require someone to be there, in person, to tell me what to do and to haul me out when I half-drown myself by panicking in the water (which I'm sure is half the reason the water spouts up my nose - unless it's some magnetic thing.)
I have to get the hang of this swimming thing. I'm a pisces, for heaven's sake! It's embarassing! And I do like being in the water, as long as noone else is making ripples or waves.
So, if there are any London-based swimming teachers who subscribe to this sort of teaching/swimming method, please drop me a line. I might be prepared to shove a little cash your way if you'll help me out. (What're the odds of that, eh?)

Coping and processing, after the fact

Where do people go? They do seem to drift away and I, for one, have actually found the year since I finished my cancer treatment at least as difficult as the year of cancer treatment. I have felt like I have been completely de-constructed. During the rush of fear and panic while I had cancer and was being treated for it, I didn't have the time or ability to do anything other than just cope; just scrambling through each day. When I finished my last Radiotherapy treatment and they sent me off out into the world to get on with life again, I felt *so lost*. And then, then I started to have the time to mourn and grieve and process what has happened to me. To work out who I am now. And I am grateful to be here, grateful to be alive - but I'm still working out who I've turned into.
Other people don't see the inward struggle - they see that you've finished your treatment and they see that as the end. They've wanted you to be better for so long that they move you into the 'better' category. I haven't worked out how to say - I may not have cancer anymore, but that doesn't mean I'm 'fine'.

Crud

Can't do it.
Can't concentrate.
Don't want to be at work.
Don't want to do this work anymore.
Want to leave.

So why the crap don't you? I hear you say.

Because I'm chicken. And hopeless. And useless.

Crud.

The Devil Wears Prada

Leading on from my lack of the right kind of shoes I went see "The Devil Wears Prada" yesterday.
I would not know Prada if it came and bit me on the ankles and I certainly couldn't walk into a shop selling it because I would be far too intimidated by all the smart people and certainly couldn't walk out again if I bought shoes without going arse over tit.
This film annoyed me a great deal.
Mostly because this film was trying to pretend that it was telling some great moral tale about how being fixated on fashion and how you look resulted in unhappiness; sadly, for me, it failed. Because despite the fact that, yes, she did give it all up because she recocognised it had changed her into someone she didn't like - the fact remains that there were lots of undercurrents.
For example: dressing prettily and being fashion-concious gets you a man with lots of money and influence
Fancy shoes and clothes mean people respect you
So on and so forth. And these things were there in abundence in the film and I don't think that last 20 min turnaround was enough to negate those messages.

Grrrr.

Years' mind - September 29th

This is a little of a cop-out post because it's actually what I wrote for the Pink for October site but I think I'd like to share it here because I did take some time over crafting it. It's not a pretty story - but then, so much isn't.

September 29th 2006:

One year, seven months and 3 days ago I sat in a small room in an NHS hospital and heard the words “I’m sorry, it isn’t good news, it is cancer.”

This was two weeks before my 28^th birthday. I sat and I stared at a metal cupboard in the corner and I thought “Goodness me, I hope I wake up soon because this is the worst nightmare I’ve ever had. This can’t be true because I. could. not. cope. with this.” But then, it was true and so I said “Well, that’s a bit of a bugger, isn’t it?”

So, from that point the journey went on: through AC and Taxotere chemotherapy, through “febrile neutropaenic sepsis” with IV antibiotics and a 5 day stay in isolation, through a portocath insertion that initially refused to work, through a mastectomy, extensive ‘jollying’ physiotherapy, through radiotherapy, Tamoxifen and Zoladex. Through uncertainty, fear, pain, tears (alright, hysterics) and depression, the journey wended its way. Wound its way through to a day one year and 18 days ago when I came round from anaesthesia knowing (hoping) that along with my breast, the cancer had gone.

The two, interlinked – something I loved with something I hated; something safe with something deadly; something that was part of me with a thing that was invading me without pity.

I spent the intervening time – six months – trying to assimilate what it meant to have cancer; trying to learn how to be someone with cancer. Someone with no hair, no eyelashes, no eyebrows; someone who could barely walk round the block; someone whose collection of medications made them look like a pharmacy – or a drugdealer (anyone for domperidone? I have enough to last a lifetime but, sadly, they didn’t work for me!); someone living with a lump that was trying to kill them.

And then, (now), then(now) it was(is) gone and I had(I’m having) to learn that too – how to be a person without cancer, how to be a person who *had* cancer. Do I still have cancer? They tell me I don’t, but how do they know? How can they know that there isn’t a small cell lurking somewhere in me, just biding its time? In four years – if the cancer doesn’t come back in the meantime – I’ll “officially” have beaten it. My risk will be no greater than anyone else’s. How will I feel then?

My fear is that I’ll never believe it’s gone and will live the rest of my life with a mental scar as prominent as my physical scar.

Why, thank you!

Ooh - thank you for all the comments - I think that's a personal record! I should ask y'all questions more often....

My dilemma over commenting isn't really resolved but thank you for the excellent advice. I'll think on't!

Depinked and rules

Oh - I forgot to say - we've de-pinked!
You probably will have noticed this fact. I feel so much better for not being bright pink but feel that the subtlety of the plain white-ness - i.e. no colour at all - looks a bit dull now. And I'd like to think I'm not as dull as all that.
But I don't really think much of the other colored designs on offer at blogger so I don't know what to do..... Any ideas?

I also wanted to say that I will be making a policy of commenting on at least one new blog each day for the duration of NaBloPoMo - because it's nice to comment, isn't it?

But what is the etiquette with commenting?
When someone comments, do you write back and say 'thanks for commenting' and then do they write back and say ' no problem, you're welcome' - at what point does someone *stop* responding? Or don't you respond at all in the first place? I don't know the rules - help!

Luce Irigaray and Feminism - who are we?

Today's epistle is on Luce Irigaray and feminism and the role and identity of women.
Or, it would be if I knew anything other than what I read on Wikipedia about her; but I think I may need to know a bit more about what she thought.

Today I have been thinking about my identity as a woman or my lack of identity as a woman. I abhor all 'girlie'-ness and somehow feel it is a sign of weakness. Being female is to be weak and vulnerable; it does not comand respect. And so I am not allowed to plan a fantasy wedding or pick out my children's names or look at engagement rings. I am not allowed to wear dresses or make an effort to look pretty. If I wear makeup or dress smartly I feel like I have to put myself down. I hate to cry and be emotional or irrational.

Imagine how this confusion over my female identity has been affected by the loss of my breast.

You must understand that this is in some strange instinctual part of me that I feel this. It is not what I logically believe to be the case and it is not the way I think women ought to feel or what we or I should believe.
I believe in equality. But somewhere underneath I am undermined by myself. And I have no idea where I have learnt this from. Not really. In a roundabout way - I think I've always tried to behave in a non-'girlie' way and somehow that has had the effect of teaching me that to be female therefore must be 'bad'.

Apparently, Luce Irigaray started to say that that women could/should be equal for what they were, which is different to men. But that society did and does not recognise that. I believe that the 'third wave' feminists are the women out there who are saying that feminism is actually about choice - it is about choosing which elements of femininity to embrace. Which, I think, is what some 'mommybloggers' out there are saying - especially SAHMs who counter the arguments that they are undermining the work of feminists gone-by who fought to get women out of the home and into the workplace. That actually, being a feminist is about having the choice - of choosing or being as female as you wish.

But I can't be a woman - I haven't got the right shoes.

Playing with my port - 2

And so they left me and my family came back and I was feverish and shaken and so scared. I had been nervous about the use of the port before she'd tried and now I was convinced that it was faulty and they'd have to remove it and put another one in. And it would probably have to be on the other side and then I'd have two of these scars (a matching pair!) and try explaining that to people.
My parents had rung David to let him know what was going on - poor soul - I think he must have been so scared - he wasn't in London and couldn't get down to see me that day.

After a while, Keith came by - he was his usual cheerful self - nothing seems to throw him. He massaged my legs and feet which was strangely reassuring. I think it's a human-touch thing - it's comforting and reassuring to be touched. We are tactile beings and we need to feel connected. Keith offered to lend me his CD player and a couple of relaxation CDs after I told him what was going on - he could see, anyone could see, that I was in a total state.

Eventually Ivy comes by - she's another reassuring sort but she explains that the chemosuite is really busy so we'll have to wait until things have quieted down a little.
So we carry on waiting - it's amazing how much you wait.
And the sun moves round and streams through the window and it gets hotter and hotter and I was already hot to begin with! One of the nurses finds a fan which stirs the air around a little.

Finally Ivy comes back - this time my parents are allowed to stay in the room. She has me lay down and she starts to feel the whole area around the port - trying to feel where it is and how it's lying - I am like the proverbial board, and so tense; I grip my dad's hand and he tells me to squeeze, hard. Every time Ivy presses or touches the area it's all I can do not to writhe and wince. It hurts, my shoulder is so stiff and I don't want anyone to touch it - but I let her. Once she thinks she's found the right place she puts the needle in - when the needle is put in it goes through the skin and punctures a silicone rubber bubble covering a chamber which connects to a catheter which is connected to a vein. The bubble is self sealing, so when the needle is removed, it seals over.


Unfortunately because mine is so new, I'm still bruised and sore so the pressure of the needle going in presses the base of the portacath back into an already sore spot. The needle goes in, but again, nothing is coming out. I'm freaking - I have this foreign object inside me - freaks me out already and in addition, it's faulty, it doesn't work, it hurts, it's all bad, bad, bad!
Ivy tries to move it around, pushing it down, moving it around slightly - it's excrutiating, every time she does it a shot of pain goes through my shoulder - I am brave, I lie there and take it and squeeze my dad's hand and try not to gasp too much but I can feel it catching and grating. My mum stands at the bottom of the bed - holding my foot. I think she must have found it very upsetting - it's hard to see your child in pain and not be able to help. After about half an hour Ivy says that it seems to have been put in quite deeply, that the stitches are in the way and that it's quite swollen. She thinks the problem is that these factors are preventing the needle from going far enough into the port - she wants to try a 1" needle. However, she'll put some Ametop cream - a topical anaesthetic cream on the area to try and decrease the pain somewhat. The cream has to be on for 45 minutes before it really takes effect so Ivy goes away for her lunch.

I can't remember that time really - other than a feeling of sheer and utter panic - I often described the way I felt last year as 'twanging with anxiety' and that's what it often felt like - I was so wound up and tense with anxiety that I felt like the vibration and sound and tautness of an elastic band stretched out as far as it will go. I was at snapping point for a year - I never knew if I was going to completely lose the plot from one moment to the next.

Ivy came back, she cleaned off the cream and put the new needle in - it still hurt. I think it was the underlying bruising and pulling of the stitches that hurt more than it was the needle going in. This time a little bit of blood pulled back out into the syringe but not much and it was hard going for her - it still wasn't really working. Ivy did move it around a little more, with no better results. Eventually she said that she wanted to stop - she could see how much it was hurting me, it wasn't working properly - probably because it was swollen and the stitches were still in. She would put in a cannula for the antibiotics and we'd try again another time. She didn't want to hurt me any more.
She redressed the portacath site and stuck my hand in hot water to bring up the veins and put a cannula in the back of my hand. Which she did beautifully, without a hitch, so that I barely felt it - why couldn't they have done that in the first place?
Nightmare nurse came back and injected the first lot of antibiotics into me - it felt cold in the back of my hand and up my arm but hopefully they would start to do their job.
They still had no idea where the infection site actually was.
This is part of the view I could see from my room.

Where's autumn gone?

It's 5.30pm and pitchy black out, now that the clocks have changed for winter. It's at times like these that I wish I had a quilt under my desk so I could curl up and not have to get home in the dark. To be truthful - it's unseasonably warm, so it could be worse - although, of course, my perception of temperature is less than reliable....so maybe it's freezing really....
The leaves are clinging on to the trees for dear life but the wind today has made some of them start to fall. Quite a few are still spring-green though. I've been enjoying the cooler weather too - cooler nights and that nice cool when I step out of the door in the morning.
There were no conkers on the tree at the back of my flats this year - the heat of the summer meant that they didn't mature properly.
Do you know what a conker is?



The fruit of the horse chestnut tree - their prickly shells are in direct opposition to their shiny, smooth surfaces. And each year I collect a few and carry them in coat pockets because I love to feel the smoothness of them. When they first come down they're really shiny and smooth and as they dry out they crinkle and shrivel. But I don't have any this year.
I did have an acorn for a while, but it didn't last as well as a conker....
Even though it's rained quite a bit recently there isn't that damp, autumn feel. I wish I could capture that smell and feel to share it with you. The smell of woodland decay - leaves and barks and seeds gently settling for the winter, and yet - the result of that decay will be ready to feed the new growth in the spring. It's sad; I oddly miss cold winters and damp and dreary days - is the world dying? It's changing, that's for sure - in so many ways - I've changed, but it's changing too. I worry about what we're doing to the world - yet here I sit at my computer, consuming electricity and metals and plastics that will kill the world a little bit more. Will the world and I go down together? It's odd - I sit here and sometimes think that it would be better if we had never gone down this path of consumerism, of great technology - the search for new and bigger and better and how and why - that the simple life was better. But, of course, without all of that - or at least some of that - I would have died from cancer and wouldn't be here to think those thoughts.

Odd.

Up/down

So, I guess I'm feeling down again. When I force myself to have a 'good' day the result is a relapse into misery for longer than I felt vaguely cheerful.....
Blah - if I post this every day then you'll never stop by.
How about if I bribe you with the rest of the story of last year? No, that'll probably put you off even more!
Don't forget to say 'hello!'
I know if you did or not! ;)

Fear

In the summer I agreed to go as a leader on a trip to Peru - I was scared stiff by the idea but I thought that I needed to do something that scared me. Something daring, something to prove I could do things, to prove that cancer hadn't got the better of me.
Now I am starting to wish I hadn't agreed.
I am not getting less scared, I am getting more scared. I'm scared that something terrible will happen, that someone will get sick, that I'll get sick, that we'll all have travellers guts, that I'll screw it up and the consequences will be bad.
I am scared stiff and I just want to pull out.

I'm also scared that I've tempted fate - that cancer will rear its ugly head again because it knows that it'll screw up everything......

I'm scared: as ever
Because I'm scared of everything.

Say 'hello'

Won't you say 'hello'?
If you're the person visiting from BCC or Westminster, or indeed, anywhere - won't you say 'hello'?
I promise not to bite - I'm just interested to know who you are....

And if you've landed here because you've done a google search for 'portocath' - read on - in fact, I'll label those posts tomorrow so they're more easily found. I have a portocath, it's great, it wasn't trouble-free to start with but it made chemo a lot easier to stand. And you can say 'hello' if you'd like to; or just know that if you did, I'd be thinking of you.

Letting go?

Have I let go a little?
Have I let go of the surgery, of the chemotherapy - has the fact that they are over a year ago now meant that I can let go a little?
I am mourning so much - I feel totally screwed up. I'm working on it but as I delve deeper and deeper, I am more and more aware of how much work I have to do.....

National Blog Posting Month

Think I can do it?? Would you like me to do it? I am the Little Engine That Could. Or might. Or will you be saying 'shut up, shut up, shut up' within a few days! ;)

Raise money!

Oh, and crap, I forgot the most important thing and that is:

The Great South Run

Sarah was my partner in chemo-crime last year and she can run, and I? I can not. So she ran the Great South Run (10 miles) with 2 friends to raise money for Breakthrough Breast Cancer - you can still sponsor her - they're about £10 from their target of £1,500 (a bit under $3000).
Please help her to surpass her target and HELP PEOPLE WITH BREAST CANCER - because you know you want to!

Thank you ::begging complete::

TOO PINK

OK - this pink is seriously off-putting. I can't face writing because of all of it.....
It will change - soon. because I have the time to play with my blog...NOT.

God, I am just drowning at the moment.
My guide unit has dragged me through the mill and let me just say that I've spent far longer than I'd like in talking to girls parents about their behaviour and what is and is not acceptable. Scarier are the parents who encourage their daughters 'to stand up for themselves' - by shouting, swearing and physically threatening. AND I HATE IT! I hate trying to talk to people in situations like this and I hate what's going on because it involves bullying and that nasty snidey, sarky, snarky behaviour that girls can display. And it's hard to discipline that because they're not stupid enough to do it while I'm nearby. Who'd be 13 or 14 again? Not me, for sure!
Arrangements for Peru are doing my nut - we can't decide on accommodation, I can't arrange Travel Insurance until after the end of November so I can say that I'm a year out of treatment and it's just overwhelming - I'm increasingly thinking 'why am I doing this?' I keep reminding myself that it will be a fantastic experience and I'll enjoy it when I'm there but....
And I just spent a lovely weekend with a lovely friend who will have her first baby in about 3 weeks and I am so jealous and she's not even that excited or happy. So not fair.

Gah.

Breast Cancer Awareness Month

You may have noticed a slight change to your usual service.....
I know the pink is alarming and slightly sick-making but, rest assured, it's only temporary.
October is Breast Cancer Awareness Month and I've gone pink slightly in advance. It will only be pink for the duration - I promise!

You know the drill: know your breasts, check your breasts, throw embarrasment to the winds and show 'em off to your GP if you're worried, don't smoke, birth control pills are not your friend, eat healthily and bear in mind that the earlier you start your family and the longer you breastfeed, the better (less exposure to oestrogen during your lifetime). Not doing these things doesn't mean you'll get cancer - these are just a few known factors that *can* (not will) help to reduce your chances of getting breast cancer. But remember that 1 in 9 women will get breast cancer at some time. The brilliant news is that there is loads of money going into research and treatment of breast cancer and if it's spotted early enough then the survival rate is very good. Be proactive!
And above all: noone is too young for breast cancer. Cancer does not respect your lack of age; in fact, it doesn't respect a damn thing. If a doctor tries to fob you off with the 'you're too young to have BC' line then you tell them you know someone who had breast cancer when they were 27.

Here are some of the sources out there who I've had help from over the last 18 months:
Breast Cancer Care




London Haven
Cancer Bacup
Lavender Trust

Lots of them have lovely things on sale or links to items being sold to raise money for research and care of people with breast cancer. So, if you fancy lavender wellies or pink gardening gloves or any number of other things, you can help them to support people like me.

What I did last night, or torture extraordinaire

So, (I start all my posts with 'so' - it's so you all feel like we're just picking up a conversation where we last left off...) So, Sarah dragged me off to 'Body Conditioning' at Kentish Town Sports Centre last night. I rang her after seeing Elaine, hoping for a cup of tea and a chat only to be told that she was on the Heath walking Wooster but did I want to come to the gym with her later. I said 'yes' - god knows why - I don't do 'classes' - I hate being hot and sweaty and I have no stamina. But I went - and I survived. I got really hot, my hand swelled up (lymph fluid: drain! Drain, I say!) and I re-aggravated the ankle that I turned last week - it's strapped up now and I can walk on it - it's just a bit uncomfortable. 'Body Conditioning' is aerobics to start with and then exercises with weights afterwards - I didn't use weights: I can't remember what the weight I'm not supposed to go over is. (If you see what I mean) It was hilarious but no one laughed out loud at me - I'm not terribly coordinated and trying 'grapevine' and the turn and then 'kickback' or whatever those terms are; well, I was lost and was waving my arms up and down in the opposite direction to everyone else and going the wrong way and it was all quite sad. I'm not convinced that I want to go again. Sarah keeps telling me that it'll get easier. I don't mind the aerobics bit (much) but I am very wary of putting my weight on my hands - like in press-up stance and I was scared when my hand started feeling so swollen. It went back down again - apart from the baby finger knuckle that's always puffy now. I'll keep thinking about it.

In the meantime, in order to try and solve the utter disorganisation and being unable to remember things anymore I have bought a filofax. No laughing and no poncy-jokes, please. I just can't cope - I need to-do lists and a diary section with the hours marked in it and somewhere to scribble shopping lists and guide programmes and Peru details. And I was doing that with bits of paper and it was a disaster - I just had scraps of paper all over the place. So, in my eyes, a filofax is just a grand collection of scraps of paper. So there.
It looks like this:

Except, it actually looks more like this:
Yay!! Bright red! For easy finding in bag, for easy noticing when I'm about to accidentally leave it at work/home and for just being generally sexy. If a filofax can ever be such a thing. And it has lovely different colored sets of paper for writing notes, so I can have different colors for notes on different topics!! And it has Day Planner and To Do pages! I'm entirely too excited about a filofax, aren't I? Yes, it's true - but I have high hopes for actually being able to stay on top of things now.....

(Argh! Font has gone all ballooey (I've never written that word before - it looks wrong) and won't let me fix it. ::hate::)

October is a very important month....

Sad, tired, not a total screwball

OK - I may have been sounding a *tad* dramatic over the past few weeks. Well, alright, yes I have been.

Please be assured that it all comes and goes and that I'm not spending my life curled up in a ball weeping. I am jolly confused and muddled and astounded by where my sense of self is taking me at the moment. However, in my calmer moments I do believe that it is all taking me somewhere new; that it will resolve - that I'll come out the other side.

I just haven't yet.

I am like a child learning how to communicate; except here I'm relearning how to communicate emotionally. I think I've been 'shut down' for a very long time. I froze myself rather than expressing things - because some part of me thinks that having feelings is a failing and because they were just too overwhelming. There were too many things, one after the other or all on top of each other and they would have drowned me on my own. So I stamped them down, shut them up, told myself to be strong and get on with things because feeling something about all these things was not going to make them go away or resolve themselves. I have learnt/am learning that feelings cannot be right or wrong: they just are; that you are allowed to feel and wish for things that cannot be. I am astounded by some of the things I'm learning about myself because I find myself thinking things that are simply not true. To put it metaphorically (and why not!) I've been trying to steer my ship according to a false map and false landmarks to the wrong destination. It's time to get myself back on a course - a better course - because, of course, there are many. (and possibly too many uses of the word 'course' in the previous sentence...)
I'm starting to have hopes for the future. I won't say I see or know what it will be; but things are starting to float into the offing - I see ghosts of the future.

Gentle ghosts presenting opportunities.

Move on

OK – I’m close to cracking-up. I haven’t slept without waking every 2 hours for 3 nights now. Yes, the vicious ‘hots’ are back. If this carries on then I’m not to be held accountable for snapping, biting your head and arms off and then bursting into tears.

It took every ounce of my strength and will to get through last week. To get up in the morning, to get through the routine, to get through those hours at my desk and then to go home and feed myself properly and start it all over again. I’m miserable. I go through periods of time where I think I’ve moved on; that the memories have receded a little and then they come back and hit me again. How many years will it take? I thought: one year – then perhaps it’ll seem better but now I’m thinking that perhaps *next* year it will be better and underneath, a part of me if thinking that perhaps it’ll never be better. Perhaps I will always be sad. Perhaps I will always be grasping at life trying to hang on. Trying to keep up. Trying to be on top of things instead of running around after them.

And then I’m scared and hate myself for finding this so hard – this cannot be as terrible as everything I went through last year! That took real tooth-gritting will-power. I feel like it’s taken me away – the cancer may be gone but it’s still eaten me up in the process of banishing it. It’s taken so much to get through it that, actually, what’s left of me isn’t worth having.

Stop me if you've heard it all before.....

Scarsville

Happy Birthday to my mastectomy scar!!

A year ago today my cancer was removed and with it, my cleavage. Hey, who wants one of those anyway? Other than the entire damn western world, that is. Today I find myself mesmerised by other women's cleavages - and they're everywhere! The fashions, they are low cut; the bras, they are on display and me - I find myself staring at other women's boobs, and that's pretty weird.

I never used to think much about them before: they were there and if I had the right top on and stood at the right place at the bar in the pub then I might get served before the blokes. And I liked to wear my fitted tops and I loved my lacy, beautifully colored, low-cut bras. No matter what I was wearing on top it made me feel good to be wearing something sexy underneath - even if only I knew it.

I have had some very nice, very kind comments recently so I wanted to say a more 'public' thank you. 'Thank you, ladies'. I have to admit, I'm not feeling very beautiful or even very happy with myself anymore. I never thought this would happen to me. No-one ever does, I expect. I just feel sad now - just sad; in a dull, heavy, weighted-down kind of way and nothing much seems good - it doesn't seem *bad* either - just...flat. Like nothing much, like I've gone numb along with my scar. It's my "little souvenir of a terrible year".

I have occasionally stamped my foot and said 'it's not fair' - but I guess I don't feel I'm allowed to complain. It doesn't change anything - it doesn't make it go away but maybe I should; maybe those 'dragons' need to be named and released. Maybe I'm allowed to whine a little bit and say 'it's not fair'. Well, you know what: IT'S NOT FAIR! WHAT DID I EVER DO WRONG? I'VE ALWAYS BEEN THE 'GOOD ONE' - too afraid to be anything else and look where it's got me....I'm boxed up by my fear and constrained but it didn't save me from breast cancer. It didn't save me.

Allowing mutilation

A year ago today I signed a piece of paper giving my consent for my right breast to be removed. I had tears pouring down my face and as I went to sign I shouted/screamed/vocalised; I couldn't sign it without that. Somewhere I have a copy of that piece of paper and one day I will look at the signature: I bet it doesn't look anything like my signature because I don't think that was me.

I think the signing of that paper was the worst part - almost worse than waking up after the mastectomy. Apparently as I woke up from the anaesthetic, I was crying. Utterly unconsciously. But still tears were coming. I don't really remember. But having to say 'yes, I allow this' - it was awful, because I didn't want them to mutilate me. But I did and they did.

After I signed the consent form they let me go home as long as I promised to come back by 7.30 the following morning. I made David take some pictures of me - you know - with both breasts. I haven't looked at them since. Maybe I will one day.

Radio trauma-rama

Class night.

I woke up at 4.30 with 'the hots'. Whilst fumbling for my chillow and waving pillows around I managed to knock over a half-full pint glass of water (Water! People! Water! I don't do the booze!). And I knocked it all over a) my pillows and my side of the bed, b) thd radio alarm clock and c) the bedside table and 'the gap' - you know, that space *between* the bed and the bedside table that is a useful cache for those things that won't fit *on* the bedside table. Mine was the repository for those big clear plastic bags full of anti-sickness medications, steroids and painkillers that I used to come away from the chemosuite, post-chemo, with.

["Hi! I'm Emily, I have cancer and I rattle when I walk!" Last year was *great* - NOT]

So currently, 'the gap' has my useful A4 notebook for planning and writing, an Asterix book (of course!), a box of 100 soluble paracetamol (they didn't have any smaller boxes in Morrisons pharmacy and it's a stupid size!)

So, I spent a happy, groggy 20 minutes with a towel drying off those things plus the stuff on the *top* of the bedside table (too. much. stuff.) including the clock which was rather damp too. Went back to sleep eventually.

Woke up - later than the alarm time - radio is making strange hissing sound. Whoops.
I play with the volume control - louder hissing. I tip it up - AHHA - if I stand it on its side then it plays!! (Of course!) So I leave it on and have a bath and get ready - now I'm ready to leave - it won't turn off!! Classy! No matter which way I tip it. So I've had to leave it singing and talking away to itself - BBC Radio 2 all day.

Class night.

The tales, they do get better....

World's worst

World's worst Zoladex injection this morning. The nurse's hand slipped as she was sticking it in my abdomen and it came out and she had to reinsert it and OW! That flippin' hurt! I think that one's going to be an almighty bruise. I knew it wasn't going to be good when she had to fetch Ivy (Queen of the Chemosuite) to show her how this particular Zoladex injectable worked. Doesn't fill you with confidence, does it?
Plus it took her a really good feel-around to be confident enough to insert the needle to flush my portocath and that's always 'uncomfortable' i.e. it hurts. So a less than good day in the chemosuite - and considering I had to wait over an hour, even when I was there first thing, annoying. I guess I have a hard time accepting that I'm not the priority any more. Which is a good thing. Because being a priority means being really sick and I'm not anymore. So I was cheerful and accommodating and patient but there's a little bit of me that still wants to be looked after - to be the patient not just patient. But not really.
(Please don't send my cancer back just because I admitted that!!!)

T'was surgeon check-up on Tuesday too. All was well there. Well, all except some damn swelling in my hand which he didn't say was lymphoedema but I assume it actually is. It's tiny - you can barely see it but unfortunately I can feel it - my hand is stiff and I have pain down my arm. The surgeons response to this was 'yes, it can happen' - ARGH!!! TYPICAL SURGEON RESPONSE!!!! Pain and discomfort just doesn't register. I'm sitting there thinking 'please tell me what I can do to help make it better', surgeon's head is thinking 'it's only pain, it doesn't matter'. Well, it matters to me! I want my damn arm and hand back! I do not want lymphoedema as a daily reminder of all I've been through.

I'd also really like my knees and ankles not to seize up - sometimes I stand up and I can barely walk because I've stiffened up so much. I'm like a granny and I'm only 29 - this must cease!!

ALSO - the insane sweating has come back. I thought the gabapentin was working but the flushes are getting eviler again - my arms, they sweat!! Whose *arms* sweat?!? I mean, absolutely *dripping* and *running* with sweat. So much so that when I put my arm down on a piece of paper the other day, when I lifted it off again (I was writing) the paper was sodden - wet through and sticking to the desk. I am disgusting and I loathe it. I woke up 3 times last night and at 3 in the morning I had to go downstairs and outside where I lay on the concrete paving slabs outside the back door because they were cool and I just couldn't cool down....
Horridness

'Nuff complaining?? Perhaps so.

::Whaaa::
::Whinge::

Get over it girl - in fact, go and wash off the day's layer of sweat and go to bed to aquire some more.
Deep joy.

Life or death - for plants

Having let rather a collection of plants die of dehydration and green-fly munching on me over the last year or so I was desperate to manage to keep a few alive.

I think it was as a sort of celebration or affirmation of the fact I'm alive (yeah, alright, dramatic - shut up) But still, I wanted to prove a point - to enter the world of people who kept things alive.

However I recognised that my past track-record didn't paint a good picture so I didn't aim too high; I tried to be clever by picking drought-loving herbs: sage, lavender, thyme and then I cunningly put those crystal things that absorb water in the pots when I planted them.


Here are the results:


So, we have (from top to bottom) : one not-happy-but-not-dead-yet thyme, one dead sage and one mostly-dead lemon thyme, one flopping and sad-looking lavender and one caterpiller-munched sage.

I suppose I could say that more of them are alive than are dead but they don't look like the lush, green, happy plants they were when I bought them. Plants, why don't you like me?? (Because I don't water you enough - OK, shut up now plants)

Radiotherapy

Sometimes as I lay on the radiotherapy 'bed' I used to cry. I was laying there, naked to the waist, with my arms above my head, carefully positioned using laser lights lined up with the tatoos they gave me, and I wasn't allowed to move. Everyone else had to leave the room - they had amazing mental arithmetic skills - and they'd all rush out. It's odd to be experiencing something that everyone else can't because it would harm their health. Strange, yes?

And so I would lie there - listening to the music. Because they always had CDs playing - which was so nice. But I fear I will never be able to listen to the Coldplay X&Y album without being transported back to that place; the same goes for some REM songs. And so, I would lie there, tears rolling down my face and into my ears because I couldn't move to wipe them. And I couldn't make a sound and I couldn't *cry* cry, because I couldn't move my body - not to shudder, not to shiver, not to weep.

And sometimes I would be shuddering because it was so cold in there. The machines like it cold and so I would be absolutely shaking with the cold and wishing desperately for a hot flush. I don't know how the radiographers stood it - their hands would be freezing cold as they touched me - moving me around, manipulating me into the right position. They were all, without exception, lovely to me. Another collection of lovely New Zealanders - male and female - plus some others. The names have faded but the faces stay in my memory.

So, sometimes I listen to the music that takes me back there - I don't know why. I like to torture myself and live in the past I suppose.

Cancer and money

I am so incredibly lucky.

I am lucky that I live in the UK and that my National Insurance contributions mean that I don't have to pay anything for medical treatment, bar £6.50/$12 per prescription.

When I was diagnosed with cancer last year - no one was asking me how I was going to pay for:

• 8 chemotherapy treatments and medication,
  
• for a portocath insertion,
  
• for emergency care when I got neutropaenia,
  
• for a daily District Nurse to visit to do my injections,
  
• for surgery,
  
• for 25 radiotherapy treatments + planning and
  
• more consultations that I can remember.

While I flailed around in confusion and fear - no one was asking me for my insurance details, demanding my credit card.

They simply treated me.

I never had to make decisions about whether I could afford the treatment I needed. I didn't have to put a price on my health - on my survival. I didn't have to delay treatment because I didn't have the cash. My doctors simply decided on the best treatment plan for me and

we did it.

And it's not that I have had all of this for free: I haven't - I've paid my National Insurance contributions for 6 years and I will continue to do so for the rest of my working life. And how much better than insurance is the UK system?? Fantastically better. Because the NI that I pay goes to the Health Service whether I am sick or not. The money I pay today doesn't treat me - it treats others and when I am sick then the money of others pays for me. It's a giant care package.

I am also incredibly lucky that when I was diagnosed with cancer I had a job - a good job with a good contract that gave me 5 months sick leave on full pay plus 5 months on half-pay. I worked while I was being treated so I never got into the half-pay scenario. But I am so grateful that I had a contract that protected me from discrimination, from being made redundant or losing pay - even my pension payments continued to be made.

Today I have read tiny excerpts from 2 blogs belonging to women in the United States - one is 20, the other 25.

• One has been diagnosed with breast cancer and is bankrupting herself trying to pay for her treatment.
  
• The other may have have breast cancer but her insurance company will not pay for her to see a surgeon to have it diagnosed because she is 'too young to have breast cancer'. She is going to have to pay herself to have the lump removed and hope that the diagnosis is good.

I am so lucky.

I wish I could give the treatment experience I had to these women who are even younger than I.

It is awful to have breast cancer.
It is awful to have breast cancer when you are only 20-odd.
It is truly awful to have it and not be able to be treated in the best possible way.

I had cancer and it was awful but at least I (and my family) could say that I was being treated by a fantastic consultant who was world-known in her field; that I was having all the treaments that were recommended, when they were recommended; that I was in an excellent teaching hospital. I didn't have to play a balancing act between staying alive and not being destitute.

I've never thought the US system was a good one: it didn't serve my grammy and grampy well but now I cannot believe that it's humanely right. To put people in these sorts of dilemmas. To have to die as a result of cancer because you couldn't afford the treatment at the right time.

I am appalled.
My thoughts are with people all over the world who cannot have what I have had.

And by-the-by: 'Thank you' National Health Service for the fantastic treatment, the fantastic people and for the timely manner in which I was seen. This is why I would never leave the UK.

Hair, Boston Pops, Limos!

Final photo - this is me at the Boston Pops - also last Christmas. Shitty photo, taken by camera phone. But look! Look at the hair!! Not curling! Too short to curl. I look tres attractive, yes? Or not - one or the other.

We were sitting right by the stage - see podium behind us. This was a present from my *fantastic* brother (who always does brilliant presents) and included getting there and back in a Limo. My first time in a Limo. He's so cool. I wish I were him.