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.

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.