Monday, April 30, 2007

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.

Monday, April 23, 2007

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!

Thursday, April 19, 2007

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.

Friday, April 13, 2007

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!

Friday, March 30, 2007

::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!

Wednesday, March 28, 2007

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.

Tuesday, March 27, 2007

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!

Saturday, March 24, 2007

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.

Tuesday, March 20, 2007

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?

Monday, March 19, 2007

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?)

Friday, March 09, 2007

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!".

Monday, March 05, 2007

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.

Friday, March 02, 2007

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.

Wednesday, February 21, 2007

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.....

Sunday, February 11, 2007

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.....

Friday, January 26, 2007

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?

Thursday, January 25, 2007

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.

Tuesday, January 16, 2007

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!

Sunday, December 17, 2006

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.