I think I have Ikea-shoulder. You know, the condition that results from building too much Ikea furniture.... I've only been attaching the handles to the doors of the cupboards today - 9 of them, 18 screws and I Can Feel It In My Shoulder. Hopefully this endless assault by Ikea will be concluded soon and then maybe my shoulder will feel better. Maybe also, pigs will fly and I will discover that I am cured of cancer on Wednesday. Flap, piggies, flap harder! They're just Not Trying. Lazy hogs.
Pink Hebe just did a little '10 things I love' with the letter 'H' - because I am In A Hurry and can't wait to be assigned a letter because I want to blog it Now, I shall pick my own letter - 'B' is the first one to come to mind. These are not in order of loved-ness; they're in the order they came to mind.
1. Buffy the Vampire Slayer and Battlestar Galactica - I've been working my way through the boxed set of BTVS since January and am just about to finish series 6; BG, I have been grokking out on the boxed set of this for the last 3 days - beginning Series 2 now. I like Buffy because it's humorous and female-empowering and mostly because I like anything Joss Whedon lays hands on (Why can I not download Dr Horrible!?!?!? Why, oh why? Living in the UK is Unfair.)
2. My mum's name begins with a B - and I love her A Whole Big Lot - Bigger Than The Universe in fact. She should have been number one - I blame the fact I'd just been watching Battlestar Galactica.
3. Books - I read A Lot. I like the reading of them, the owning of them, the perusing of them in shops, the smell of old books. I like books. The end.
4. Bloglines - it lets me read all the blog feeds I have very easily. On the other hand - it's naughty because it stops me visiting the actual sites and that's Not Really Very Nice of me. Sorry.
5. Bear. I have a teddy bear who I have since I was very small. He is yellow and rather matted-looking but very loved. I have never been very good with naming my fluffy friends so his name is Bear. I have other bears, they are also called Bear. I do have Brown Bear and Waistcoat Bear who has, wait for it, a waistcoat.....
6. Berries - I like berries - particularly raspberries, but also strawberries and blueberries. Blueberry muffins are good but raspberries with plain yoghurt and chocolate sauce is the best.
7. Bernie Bunny - you U.S. types may be aware of this and may call it Annie's Mac n' Cheese but in my family we always call it Bernie Bunny because it has a picture of a bunny called Bernie. Yum, but I can't get it here in the U.K. :(
8. The B-52's - what's not to love? The soundtrack of my adolescence (not time-wise I suppose) - Deadbeat Club, Tell It Like It T-I-Is.....I'm afraid I know all the words...
9. Brent-Dyer, Elinor - I used to pretend I was going to the Chalet School and fold up all the right clothes to pack..... yes, I was quite a sad little girl.....My favourite book is Carola and I have never the read the last bookin the series. I'd hate it all to end.
10. Baths - I like water, water is good for me. It soothes me. Baths, swimming pools, sitting by the sea. But a hot-as-you-can-stand-it bath with something fizzy and citrusy from Lush.
The Dear Other is miffed that I am not admitting to you all that he is doing monkey impressions - so he's turned over and turned out the light. Quite why he wants this on the record I have no idea but hopefully this will placate him.....
Saturday, August 30, 2008
Wednesday, August 27, 2008
Satelite-link pause
Wow - I've actually been back for 2 weeks, but it feels like 2 minutes.....
I had a *lovely* time. Firstly the wedding of an old friend in York's Hospitium - which is a fantastic building. She looked absolutely radiant - her smile was pure joy to see and her dress was gorgeous. I was reading - part of 'My True Love Hath My Heart' by Sir Philip Sidney - it was nice to be asked since I've felt recently that people haven't really asked me to take things on. Which is probably right on their part - I'm not 100% reliable or even 50% reliable and I do let things slide without meaning to.
***
Days later...
I keep doing this; starting posts and then trailing off because I just don't know what to say. I'm bored with myself and what I have to say. It's just repetitive. And, I don't feel so bad now - or do I feel worse? I'm not sure. I've reached another plateau - there are so many. Flat, resting places, where things aren't 'good' but they're relatively static. I also have so many things to say that I can't cope with them all.....
I want to tell you about all the animals I met whilst I was on holiday and how healing they were - how astounded I felt when an animal wanted to be with me. How they demonstrated that whole unconditional thing; they don't know I have cancer, they don't care - they just liked me. And how I think I need an animal in my life. My own. I grew up with cats in the house - I can't really remember *not* having them but they weren't *mine* - not mine alone. And that's what I want. I want a donkey and a cat and a dog, and I want to go and swim with dolphins.
I want to share the pride and satisfaction I felt yesterday when I finally swam with my face in the water. Yes, at the age of 31 I've finally started to 'get it' - I finally started to see how the rhythm and breathing works. I stopped 'panic' swimming - where you avoid putting your face in the water and move frantically because you think if you stop then you'll sink. And I love being in the water. I've always been scared of it but have wanted to be in it too. And I finally managed a length of breast stroke at relaxed speed, bobbing with my face going in the water rather than fighting to avoid it. And I got to the deep end and I wanted to shout out loud, I was so pleased with myself; but I contented myself with muttering under my breath instead.
I want to tell you have I've been having pain in my shoulder and my hip and I don't know what it is - particularly my shoulder. I'm not sure if it's seized up again because I stopped doing my post-surgery physio exercises, or if the lymphoedema has spread round into my shoulder and back or if there's cancer growing in the bone or lymph system there. My hip feels like a trapped nerve or sciatica - but is it being caused by a tumour in the bone? I don't know. But, as a result, my 3 monthly CT scan was augmented with a full bone scan. The Princess Consultant says she's worried on a level of 1, out of 20. I just hope she's right. It's nearly a full year since we found the mets - I've survived a whole year. How many more years?
I want to share how sad I was that my favourite nurse in the chemosuite has gone home to Australia. She was the last of the little bunch I really loved who started after the chemosuite moved sites in the hospital. Now there are some nice nurses and some really adept nurses who are shit-hot with my veins (Cannula in first go for the last CT scan - thanks Ernie!!) but I haven't connected with them like I did with Megan and Martha and Celina and Melissa. So I cried when I said goodbye to Megan and she did a bit too. I gave her my email address and I hope she'll email me one day. She is the age now that I was when I was first diagnosed with cancer. She seems so young but so confident and so accomplished.
I wanted to tell you how confused I am about what to do about going back to work or not going back to work. I'm not sure if I want to go back, I'm not sure if I can cope with going back but I don't want to leave like this - by having virtually disappeared without a word a year ago; and now feeling so unconfident about my ability to work. But if I go back then I'd have to adapt to being back on a schedule not of my own making - timetables and work-hours and an office with 12 other people in it. And spending less time with the Dear Other - which he will be really upset about; and I will too. And I *know* - I'm lucky to have this dilemma, to have options, but making decisions is hard - what if I make the wrong decision? What if I get it wrong?
I'd like to share with you my quiet ambition to go back to playing Javanese Gamelan. I learnt and played whilst I was a student at university - on the Gamelan Langgeng in Northampton. I love the sounds and it's very therapeutic to hit things with the equivalent of hammers! ;) If you've watched the new Battlestar Galactica then you'll have heard sounds from the gamelan in the soundtrack.
Um, I think there were other things too - but I've forgotten them. Now you know...
I had a *lovely* time. Firstly the wedding of an old friend in York's Hospitium - which is a fantastic building. She looked absolutely radiant - her smile was pure joy to see and her dress was gorgeous. I was reading - part of 'My True Love Hath My Heart' by Sir Philip Sidney - it was nice to be asked since I've felt recently that people haven't really asked me to take things on. Which is probably right on their part - I'm not 100% reliable or even 50% reliable and I do let things slide without meaning to.
***
Days later...
I keep doing this; starting posts and then trailing off because I just don't know what to say. I'm bored with myself and what I have to say. It's just repetitive. And, I don't feel so bad now - or do I feel worse? I'm not sure. I've reached another plateau - there are so many. Flat, resting places, where things aren't 'good' but they're relatively static. I also have so many things to say that I can't cope with them all.....
I want to tell you about all the animals I met whilst I was on holiday and how healing they were - how astounded I felt when an animal wanted to be with me. How they demonstrated that whole unconditional thing; they don't know I have cancer, they don't care - they just liked me. And how I think I need an animal in my life. My own. I grew up with cats in the house - I can't really remember *not* having them but they weren't *mine* - not mine alone. And that's what I want. I want a donkey and a cat and a dog, and I want to go and swim with dolphins.
I want to share the pride and satisfaction I felt yesterday when I finally swam with my face in the water. Yes, at the age of 31 I've finally started to 'get it' - I finally started to see how the rhythm and breathing works. I stopped 'panic' swimming - where you avoid putting your face in the water and move frantically because you think if you stop then you'll sink. And I love being in the water. I've always been scared of it but have wanted to be in it too. And I finally managed a length of breast stroke at relaxed speed, bobbing with my face going in the water rather than fighting to avoid it. And I got to the deep end and I wanted to shout out loud, I was so pleased with myself; but I contented myself with muttering under my breath instead.
I want to tell you have I've been having pain in my shoulder and my hip and I don't know what it is - particularly my shoulder. I'm not sure if it's seized up again because I stopped doing my post-surgery physio exercises, or if the lymphoedema has spread round into my shoulder and back or if there's cancer growing in the bone or lymph system there. My hip feels like a trapped nerve or sciatica - but is it being caused by a tumour in the bone? I don't know. But, as a result, my 3 monthly CT scan was augmented with a full bone scan. The Princess Consultant says she's worried on a level of 1, out of 20. I just hope she's right. It's nearly a full year since we found the mets - I've survived a whole year. How many more years?
I want to share how sad I was that my favourite nurse in the chemosuite has gone home to Australia. She was the last of the little bunch I really loved who started after the chemosuite moved sites in the hospital. Now there are some nice nurses and some really adept nurses who are shit-hot with my veins (Cannula in first go for the last CT scan - thanks Ernie!!) but I haven't connected with them like I did with Megan and Martha and Celina and Melissa. So I cried when I said goodbye to Megan and she did a bit too. I gave her my email address and I hope she'll email me one day. She is the age now that I was when I was first diagnosed with cancer. She seems so young but so confident and so accomplished.
I wanted to tell you how confused I am about what to do about going back to work or not going back to work. I'm not sure if I want to go back, I'm not sure if I can cope with going back but I don't want to leave like this - by having virtually disappeared without a word a year ago; and now feeling so unconfident about my ability to work. But if I go back then I'd have to adapt to being back on a schedule not of my own making - timetables and work-hours and an office with 12 other people in it. And spending less time with the Dear Other - which he will be really upset about; and I will too. And I *know* - I'm lucky to have this dilemma, to have options, but making decisions is hard - what if I make the wrong decision? What if I get it wrong?
I'd like to share with you my quiet ambition to go back to playing Javanese Gamelan. I learnt and played whilst I was a student at university - on the Gamelan Langgeng in Northampton. I love the sounds and it's very therapeutic to hit things with the equivalent of hammers! ;) If you've watched the new Battlestar Galactica then you'll have heard sounds from the gamelan in the soundtrack.
Um, I think there were other things too - but I've forgotten them. Now you know...
Wednesday, August 06, 2008
Still on hols
Heat replaced by rain - cooler; but soggier.
This going on holiday lark is full of tricks.....
There are 2 lovely donkeys in the field opposite us - I have fed them carrots.
I have a horrendous cold - heuuurrrk, coff, coff, sniff.....
This going on holiday lark is full of tricks.....
There are 2 lovely donkeys in the field opposite us - I have fed them carrots.
I have a horrendous cold - heuuurrrk, coff, coff, sniff.....
Saturday, July 26, 2008
Melting
This holiday is temporarily interrupted by the desert from heaven.
Yeah, you're thinking - it's a desert - sounds good.
No no my friends, is *stupendously* delicious.
The crust round the outside it crisp and not too sweet; the peaches and apricots are hot and mushily soft but a little tart in flavour; the ice-cream is sweet and smooth and cold; add those all together in one mouthful......perfection. Your taste buds can't keep up!
And this rather extravagant dinner was due to the fact that it has been obscenely hot in York - despite the weather report saying it was going to be showery today - so we found the first damn restaurant with air conditioning and didn't even think about the price. So, thank you daddy for the money you gave me for my holidays - it bought me two hours in the cool and the perfectist desert ever......
Peach and Apricot Charlotte with honey ice-cream
Yeah, you're thinking - it's a desert - sounds good.
No no my friends, is *stupendously* delicious.
The crust round the outside it crisp and not too sweet; the peaches and apricots are hot and mushily soft but a little tart in flavour; the ice-cream is sweet and smooth and cold; add those all together in one mouthful......perfection. Your taste buds can't keep up!
And this rather extravagant dinner was due to the fact that it has been obscenely hot in York - despite the weather report saying it was going to be showery today - so we found the first damn restaurant with air conditioning and didn't even think about the price. So, thank you daddy for the money you gave me for my holidays - it bought me two hours in the cool and the perfectist desert ever......
Monday, July 21, 2008
Where oh where are *my* diamante stilettos?
I was on the bus the other day and a girl went by me, talking on her mobile phone. She was obviously discussing an upcoming holiday judging by what she later said about suitcases. As she passed me I couldn't help but hear her say "well, it's my shoes I'm most worried about - I'm bringing all my diamante stilettos"
And my brain, it boggled.
My brain said "huh, I don't even own *one* pair of diamante stilettos; or diamante anything for that matter." and then my brain said, "huh, I would never have thought *anyone* would ever need more than one pair of diamante stilettos." and *then* my brain though "and I'm pretty certain I'll always be able to find something to worry about more than I worry about packing shoes."
The end.
I keep starting to write posts and then giving up - I'm not sure why. Nothing urgent to say, I suppose.
So, I didn't mean to worry anyone; and thank you for nice emails and messages to check that I'm OK. I am OK for now and am looking forward to going away on holiday for a couple of weeks at the end of this week.
::hugs:: to all.
And my brain, it boggled.
My brain said "huh, I don't even own *one* pair of diamante stilettos; or diamante anything for that matter." and then my brain said, "huh, I would never have thought *anyone* would ever need more than one pair of diamante stilettos." and *then* my brain though "and I'm pretty certain I'll always be able to find something to worry about more than I worry about packing shoes."
The end.
I keep starting to write posts and then giving up - I'm not sure why. Nothing urgent to say, I suppose.
So, I didn't mean to worry anyone; and thank you for nice emails and messages to check that I'm OK. I am OK for now and am looking forward to going away on holiday for a couple of weeks at the end of this week.
::hugs:: to all.
Monday, June 09, 2008
Instead of sleeping
Hot, I'm hot, and it's 2 in the morning and I'm tired, but I have that wakeful mind thing going on....not helpful. I hate it when I don't even know what I'm thinking *about*; or even what I'm trying *not* to think about. Something just doesn't feel right.
Perhaps it's because I've yet another extra week off chemo - which I know I need for my stomach and rest-of digestive tract to recover - but I'm scared what the next CT scan will show. I've had 2 elongated cycles in a row and I won't know for another 3 weeks if the medication is at the right level yet. And I worry that the disrupted timescale will mean things will no longer be stable. That cancer will be growing again. Because eventually it will be - that's inevitable now - well, not inevitable that it will grow *now; but that it will one day. One day. These are not the sorts of things you are supposed to be waiting for; they're not the 'one day' dreams I should be having. When I wasn't feeling well (at all well) last weekend (very icky) my mind immediately leapt about 4 million miles from where I was - thinking that the medication dosage would have to be decreased again already - to thinking that The Precious Oncologist would declare that Xeloda was no longer working and there were no other options and I was going to start the dying process. Palliative care next step. And my imagination was running wild (my imagination should seriously be lopped off) - trying to decide what music to have playing at my funeral; would I be buried or cremated? And if I was cremated then where would I like my ashes? And thinking of the people who would be there and how they would feel and about how would the Dear Other cope. And goodness me, I felt Very Sad and Cried (for a change). The wee small hours in combination with bathroom and not knowing if you're going to be sick, have diarrhoea, or both - plus heartburn and gas - these things are really Not A Good Combination and cause mental anguish. I feel better now - but, yet again, I am amazed by where my head goes when I'm not feeling well. I feel now like that can't possibly have been my head and my mental processes - and that is strange.
I'd forgotten, a bit, quite how simply dreadful it is to feel continuously nauseous. That feeling when you start to wish you'd just be sick and then it would be over and you could start feeling better - or feeling something other than nauseous anyway. I'd forgotten the fact that it eats away at your self-control; at the holding-it-together part of you. I didn't feel like I handled it as well as last time (2005 time, I mean) - I think that was because last time I could keep telling myself that I only had to go through it eight times (four times for the nausea-inducing chemo anyway) but now, now there is no set end. It could be many, many, many times. And it's even more miserable to have to hope that it will be many, many, many times.
Sorry, back to Boring. Dull and repetitive. I *want* to be saying other things. I *want* to have something more interesting to say. But, I was told that 'I want never gets'. And, in true-child fashion, I can only respond 'that's not fair!' Blah, blah, blah. Perhaps that's what my blogposts will be henceforth: I shall simply type [Blah, blah, blah] and you can just move on to the next blog in your blogroll.
Perhaps it's because I've yet another extra week off chemo - which I know I need for my stomach and rest-of digestive tract to recover - but I'm scared what the next CT scan will show. I've had 2 elongated cycles in a row and I won't know for another 3 weeks if the medication is at the right level yet. And I worry that the disrupted timescale will mean things will no longer be stable. That cancer will be growing again. Because eventually it will be - that's inevitable now - well, not inevitable that it will grow *now; but that it will one day. One day. These are not the sorts of things you are supposed to be waiting for; they're not the 'one day' dreams I should be having. When I wasn't feeling well (at all well) last weekend (very icky) my mind immediately leapt about 4 million miles from where I was - thinking that the medication dosage would have to be decreased again already - to thinking that The Precious Oncologist would declare that Xeloda was no longer working and there were no other options and I was going to start the dying process. Palliative care next step. And my imagination was running wild (my imagination should seriously be lopped off) - trying to decide what music to have playing at my funeral; would I be buried or cremated? And if I was cremated then where would I like my ashes? And thinking of the people who would be there and how they would feel and about how would the Dear Other cope. And goodness me, I felt Very Sad and Cried (for a change). The wee small hours in combination with bathroom and not knowing if you're going to be sick, have diarrhoea, or both - plus heartburn and gas - these things are really Not A Good Combination and cause mental anguish. I feel better now - but, yet again, I am amazed by where my head goes when I'm not feeling well. I feel now like that can't possibly have been my head and my mental processes - and that is strange.
I'd forgotten, a bit, quite how simply dreadful it is to feel continuously nauseous. That feeling when you start to wish you'd just be sick and then it would be over and you could start feeling better - or feeling something other than nauseous anyway. I'd forgotten the fact that it eats away at your self-control; at the holding-it-together part of you. I didn't feel like I handled it as well as last time (2005 time, I mean) - I think that was because last time I could keep telling myself that I only had to go through it eight times (four times for the nausea-inducing chemo anyway) but now, now there is no set end. It could be many, many, many times. And it's even more miserable to have to hope that it will be many, many, many times.
Sorry, back to Boring. Dull and repetitive. I *want* to be saying other things. I *want* to have something more interesting to say. But, I was told that 'I want never gets'. And, in true-child fashion, I can only respond 'that's not fair!' Blah, blah, blah. Perhaps that's what my blogposts will be henceforth: I shall simply type [Blah, blah, blah] and you can just move on to the next blog in your blogroll.
Friday, June 06, 2008
Pocketina
::sigh::
I keep thinking - do I have anything left to say? Or anything that isn't the same thing again and again?
It's taken me this amount of time to get to a point of saying how sad I am that Pocketina of DIYnotDie has taken down her site. I understand why she has; or at least I see reasons why she might do so. I think she needed to move on to a non-cancer part of life and her blog was tying her down to cancer, holding it her back as it were. So, was she brave enough to recognise that and to be able to press that delete button? I'm really in awe of that. It's something that I considered before my cancer had come back - I wondered if writing on this blog was actually stopping me from leaving cancer behind and whether I didn't want to move on. So when it was back I was a little bewildered - had I, in a way, caused it to come back? Had my unwillingness to move away from cancer let it take root again - had it felt wanted? But of course, all those thoughts are mush and meaningless. So, Pocketina - I'm really going to miss her; you. I appreciated all the support she gave me and I took courage from her kick-ass attitude. And part of me wishes she'd left her blog archives up - as a resource for other people going through these things. There were loads of great links up there; stuff about Lymphoedema as well as breast cancer. And fascinating things to do with craft and knitting - and the mastectomy scar tattoo's! But, I guess it would have been harder to walk away knowing that it was all still there - and maybe the deleting was a symbolic act of moving on and away. Most of all I hope it works for her - I hope it lets her run into the rest of the world; to sit more comfortably amongst the non-cancerness; to let cancer recede into the background. I really wish her that. Because I feel better knowing people have made it out of this corral.
I keep thinking - do I have anything left to say? Or anything that isn't the same thing again and again?
It's taken me this amount of time to get to a point of saying how sad I am that Pocketina of DIYnotDie has taken down her site. I understand why she has; or at least I see reasons why she might do so. I think she needed to move on to a non-cancer part of life and her blog was tying her down to cancer, holding it her back as it were. So, was she brave enough to recognise that and to be able to press that delete button? I'm really in awe of that. It's something that I considered before my cancer had come back - I wondered if writing on this blog was actually stopping me from leaving cancer behind and whether I didn't want to move on. So when it was back I was a little bewildered - had I, in a way, caused it to come back? Had my unwillingness to move away from cancer let it take root again - had it felt wanted? But of course, all those thoughts are mush and meaningless. So, Pocketina - I'm really going to miss her; you. I appreciated all the support she gave me and I took courage from her kick-ass attitude. And part of me wishes she'd left her blog archives up - as a resource for other people going through these things. There were loads of great links up there; stuff about Lymphoedema as well as breast cancer. And fascinating things to do with craft and knitting - and the mastectomy scar tattoo's! But, I guess it would have been harder to walk away knowing that it was all still there - and maybe the deleting was a symbolic act of moving on and away. Most of all I hope it works for her - I hope it lets her run into the rest of the world; to sit more comfortably amongst the non-cancerness; to let cancer recede into the background. I really wish her that. Because I feel better knowing people have made it out of this corral.
Friday, May 30, 2008
What do we want?!
For the record, I'm sure I said "I love you all but I *have* to go finish scrubbing my carpet!" not 'want' - there was definitely no wanting being experienced whatsoever - apart from wanting to *go home*...... at any rate, that was what I intended to say -- sometimes the words coming out of my mouth are, um, not quite what I wanted to say! :)
Have now slept muchly and, mostly, unpacked - I haven't quite decided what to do with my four cardboard dragons.....tricky that.
However, now I must go and pack for the wedding I'm going to tomorrow -which I'm sure will be lovely and tortuous at the same time. Tortuous because I'm sure I'm going to end up all weep, weep, cancer, why don't I get to do these nice, normal things like my friends, bit more weeping for good measure. SO, excellent, have got all that planned out nicely.
I'm also quietly rejoicing in the fact that three of my Guides went to the County Guide holiday in the Peak District whilst I was on Pack Holiday and have come back with good reports of behaviour etc. Compared to last year this is a *major* improvement and I am *Very* *Pleased*. It must be me - I wasn't there this year, so they behave - I was there last year and they were menaces about whom every adult complained, including me.
So, yes, clothing, for wearing and some makeup, and I have no hairpins and no tights despite thinking I did. Brilliant. lalalalalalalalala la
Have now slept muchly and, mostly, unpacked - I haven't quite decided what to do with my four cardboard dragons.....tricky that.
However, now I must go and pack for the wedding I'm going to tomorrow -which I'm sure will be lovely and tortuous at the same time. Tortuous because I'm sure I'm going to end up all weep, weep, cancer, why don't I get to do these nice, normal things like my friends, bit more weeping for good measure. SO, excellent, have got all that planned out nicely.
I'm also quietly rejoicing in the fact that three of my Guides went to the County Guide holiday in the Peak District whilst I was on Pack Holiday and have come back with good reports of behaviour etc. Compared to last year this is a *major* improvement and I am *Very* *Pleased*. It must be me - I wasn't there this year, so they behave - I was there last year and they were menaces about whom every adult complained, including me.
So, yes, clothing, for wearing and some makeup, and I have no hairpins and no tights despite thinking I did. Brilliant. lalalalalalalalala la
Wednesday, May 28, 2008
Blown over
*Good* *Lord*
I have survived - 4 days of brownie pack holiday, that is....
There has been endless whining, falling in and out of friends, rain, brownies who cannot sit at the dinner table for more than 5 minutes, sayings of 'Be Quiet!'.
I have also *scrubbed* a carpet, whilst seething and ignoring the fact I shouldn't be doing things like that with my right hand and arm (of which the hand is somewhat puffy today ::sigh::)
An extremely picky warden at the pack holiday house wanted every minuscule wisp of blue fabric off the floor and also apparently expected us to feed brownies only food that won't show up on the carpet tiles when it's dropped; which, inevitably it will be. So I did the job - trying to mostly to scrub with my left hand and thinking of all the retorts I'd like to make to her. Sweat dripping off me - hoorah! Very nice effect - whilst thinking I probably shouldn't have been doing it but on the other hand thinking "I'm not dead yet" and being extremely stubborn. Which is my natural state anyway. My hand will go down - I'll put my sleeve and gauntlet-thing on for a few days and knit as much as I can - I think the knitting motions help to move the lymph fluid out. And hey! I spent the weekend doing tons of things that they say I'm not supposed to do - washing up in (very) hot water, dragging tables and chairs around, hefting shopping around. Life goes on - but life's too damn short for fussing - I want a sign that says "I Aten't Dead" - I think that's funny - I have a strange sense of humour. A fact that will probably be borne out by those who put up with me for the last 5 days. That, and the fact that I'm not a whole heap of fun when I've just woken up...... ;)
Oh, and apparently I'm officially Better Company Than Cleaning Toilets. Just so those of you who haven't met me in person get a real sense of what I'm like. I hope this is filling you with enthusiasm for meeting me ;) [BTW - I will be laughing at this for evermore!]
There were other funny things - but I am too tired to remember them; which is a drag - I mean, if I can't remember something for more than 24 hours, what the hell am I? A goldfish?!
I can, however, remember GFI Snogging -but am totally unable to explain that to anyone who wasn't there at the time.....
I had some lovely times - I've laughed myself silly most evenings and am so grateful for that - it's been lovely to get to know a few people a little bit better. I'm a slow friend-maker but I think the friendships are better that way.
And friendships are what Guiding is all about (well, apart from all the other things Guiding is about anyway)
::raising glass [of water]::
I have survived - 4 days of brownie pack holiday, that is....
There has been endless whining, falling in and out of friends, rain, brownies who cannot sit at the dinner table for more than 5 minutes, sayings of 'Be Quiet!'.
I have also *scrubbed* a carpet, whilst seething and ignoring the fact I shouldn't be doing things like that with my right hand and arm (of which the hand is somewhat puffy today ::sigh::)
An extremely picky warden at the pack holiday house wanted every minuscule wisp of blue fabric off the floor and also apparently expected us to feed brownies only food that won't show up on the carpet tiles when it's dropped; which, inevitably it will be. So I did the job - trying to mostly to scrub with my left hand and thinking of all the retorts I'd like to make to her. Sweat dripping off me - hoorah! Very nice effect - whilst thinking I probably shouldn't have been doing it but on the other hand thinking "I'm not dead yet" and being extremely stubborn. Which is my natural state anyway. My hand will go down - I'll put my sleeve and gauntlet-thing on for a few days and knit as much as I can - I think the knitting motions help to move the lymph fluid out. And hey! I spent the weekend doing tons of things that they say I'm not supposed to do - washing up in (very) hot water, dragging tables and chairs around, hefting shopping around. Life goes on - but life's too damn short for fussing - I want a sign that says "I Aten't Dead" - I think that's funny - I have a strange sense of humour. A fact that will probably be borne out by those who put up with me for the last 5 days. That, and the fact that I'm not a whole heap of fun when I've just woken up...... ;)
Oh, and apparently I'm officially Better Company Than Cleaning Toilets. Just so those of you who haven't met me in person get a real sense of what I'm like. I hope this is filling you with enthusiasm for meeting me ;) [BTW - I will be laughing at this for evermore!]
There were other funny things - but I am too tired to remember them; which is a drag - I mean, if I can't remember something for more than 24 hours, what the hell am I? A goldfish?!
I can, however, remember GFI Snogging -but am totally unable to explain that to anyone who wasn't there at the time.....
I had some lovely times - I've laughed myself silly most evenings and am so grateful for that - it's been lovely to get to know a few people a little bit better. I'm a slow friend-maker but I think the friendships are better that way.
And friendships are what Guiding is all about (well, apart from all the other things Guiding is about anyway)
::raising glass [of water]::
Wednesday, May 14, 2008
Doom downgraded
Cancel doom - not required today.
All is the same; no progression - Stable still.
It's amazing how tiring it is to sit around waiting and take this stuff in.
So, you may stand down from panic stations - for now. :)
And sadly, I have to start taking tablets again on Saturday ::sigh::
The extra week off has stymied all my holiday planning as well.
We're having a week in Cornwall in September once the schools have gone back. And two weeks in Scotland in August. Lucky, lucky me! Plus *two* weekends in York for weddings. All very pleasing. I'm looking forward to tea at Taylors - I haven't been for *years*. I can still vividly remember day trips with the family to York - particularly with my US grammy; she *loved* York. On one trip I bought my copy of "The Chalet School at War" and read it all the way home on the train......maybe I'll take it along for old time's sake! ;)
All is the same; no progression - Stable still.
It's amazing how tiring it is to sit around waiting and take this stuff in.
So, you may stand down from panic stations - for now. :)
And sadly, I have to start taking tablets again on Saturday ::sigh::
The extra week off has stymied all my holiday planning as well.
We're having a week in Cornwall in September once the schools have gone back. And two weeks in Scotland in August. Lucky, lucky me! Plus *two* weekends in York for weddings. All very pleasing. I'm looking forward to tea at Taylors - I haven't been for *years*. I can still vividly remember day trips with the family to York - particularly with my US grammy; she *loved* York. On one trip I bought my copy of "The Chalet School at War" and read it all the way home on the train......maybe I'll take it along for old time's sake! ;)
Tuesday, May 13, 2008
I hate CT scans
Well, I don't seem to be able to shake the sense of doom about my CT results. After all this worry; I hope the results *are* back......I think. There's no room in my head for a 'good' result; I'm assuming the worst - just as a safety precaution really, I have nothing to base than on. Other than the fact my body can't handle as much of the Xeloda as it once could. Now perhaps that means I should expect the results to be good - as the Xeloda has obviously been having a strong effect - but is it just the side effects? I don't know; I can't know; I should just wait until tomorrow. But I can't.
Add in to this that the Dear Other's cousin died last week - she had breast cancer but they did not spot her mets fast enough. She deteriorated quite quickly apparently. The Dear Other and I are upset - she was a lovely lady and her son was due to get married in just a month's time. So unfair. We reassured each other that I was not her; and neither of us were going anywhere..... I hope what I said was true. I then had a 'woe is me', 'what is the point?', 'how does religion fit in with this?' with the Dear Other's Vicar - he was very tolerant. Not overly helpful - but what help can there actually be? ::sigh:: At least he didn't run away screaming I suppose!
Then we went to Coton Manor Gardens and saw flamingoes and their lovely bluebell wood
This is their picture - not mine; I'd forgotten my camera entirely....doh!
Very beautiful; very romantic, 'isn't this romantic?' I said to the Dear Other; 'Oh, yes', he said.
But not romantic enough to encourage any proposals apparently.
::sigh::
The bluebells will be gone soon.
Tomorrow - clinic - CT results (probably) - knowing more about what's happening whether I want to or not. Tomorrow - funeral for the Dear Other's cousin. I can't go as I'm at the hospital. Dear Other can't come to the hospital with me and reassure himself. Fortunately for me, my papa will be there with me - thank heavens for papa's! And he's very good at calm and collected - which I need sitting in that corridor.
So, panic stations, all! That's an order!
Add in to this that the Dear Other's cousin died last week - she had breast cancer but they did not spot her mets fast enough. She deteriorated quite quickly apparently. The Dear Other and I are upset - she was a lovely lady and her son was due to get married in just a month's time. So unfair. We reassured each other that I was not her; and neither of us were going anywhere..... I hope what I said was true. I then had a 'woe is me', 'what is the point?', 'how does religion fit in with this?' with the Dear Other's Vicar - he was very tolerant. Not overly helpful - but what help can there actually be? ::sigh:: At least he didn't run away screaming I suppose!
Then we went to Coton Manor Gardens and saw flamingoes and their lovely bluebell wood
This is their picture - not mine; I'd forgotten my camera entirely....doh!Very beautiful; very romantic, 'isn't this romantic?' I said to the Dear Other; 'Oh, yes', he said.
But not romantic enough to encourage any proposals apparently.
::sigh::
The bluebells will be gone soon.
Tomorrow - clinic - CT results (probably) - knowing more about what's happening whether I want to or not. Tomorrow - funeral for the Dear Other's cousin. I can't go as I'm at the hospital. Dear Other can't come to the hospital with me and reassure himself. Fortunately for me, my papa will be there with me - thank heavens for papa's! And he's very good at calm and collected - which I need sitting in that corridor.
So, panic stations, all! That's an order!
Friday, May 09, 2008
The solution
Well now, thank you all for your comments on the dilemma of the previous post - it was *very* interesting to read what you had to say and I have to say, for the most part, your comments seem to echo the way I feel about identity and blogging - and that is that identifying yourself and giving others access to your details and your blog was something to be approached with caution. For safety reasons, for sensitivity reasons. Which is exactly how I feel about it. And, quite honestly, when someone like snoskred, whose opinion and experience I have great respect for, says that she would *never* share details like that - I think there's no question left in my mind.
I'm following my instinct here, which, as Dorothy from Grammology quite rightly said, is often the sure-fire test.
So, no article for me. I was disappointed initially, but perhaps it's for the best. I like my readers and who knows what would happen if even more people came this way.....? But I suppose part of me has ambition - sees other folk doing articles or writing for other blogs and websites and thinks 'why shouldn't I?'. That's life, I guess!
In other news, I went to to Boston last week to see Eddie Izzard's new tour - 'Stripped' along with my brother. Fahbulous! Very funny. I thought he was better than when I went to see 'Sexie' live - I was slightly disappointed then. But this, was brilliant. So I was super glad I'd gone and that the feeling unwell that I did for the rest of the week held off until *after* I'd been. Alternatively, seeing Eddie Izzard gave me a stomach upset....... nah. It was the capecitabine. I really did think I'd picked up a bug on the plane because the capecitabine symptoms had been so minor and now I was feeling nauseous as well as having an upset lower digestive tract. But I saw The Precious Oncologist on Wednesday (why, yes, the day after I got off the red-eye from Boston!) she immediately said it was the capecitabine and that I needed an extra week off and it was time to reduce the dosage. I was gutted. I am gutted. It's my aim to keep going as long as possible on each dosage level - because each lowering is a step closer to not having any more options. And I'd hoped to keep going on capecitabine for *years*. (I have *nothing* to base anything about length of time etc on, it's just my arbitrary aim.) So, I've had 11 cycles on 2300mg twice daily. She went on to say that I had gone on at this dosage for longer that any patient she'd ever had and that most people managed 2 or 3 cycles at this dosage before reducing. So, actually, I've done bloody brilliantly. But I still wish I could have kept on a little longer..... but she went on to say that if we carried on at this dose - I'd probably get a few days into the cycle, become really unwell and then we'd have to have longer than an extra week off and that the important thing is to keep the cycles going on the 2 weeks on, 1 off rhythm. I don't really understand this - how can than be more important than the dosage level? It's illogical to me so I conclude I don't have enough information and that I'll be asking some questions when I see her next week.
I also had a CT scan on Wednesday - so hopefully I'll get the results next week too. I hope they'll continue to be good and show that the capecitabine is still working. Otherwise there'll be a whole slew of points between here and No Options Left crossed off the list (this is a pretend list - there isn't actually a list). On a more general note - having a cannula put in after a transatlantic flight plus diarrhoea is quite a challenge - the dehydration makes the veins *vanish*. Hence, I have a lovely bruise where apparently we hit a valve. Did you know you had valves in your veins? I didn't. I do now. Plus we had to downgrade to a yellow cannula as the blue just wasn't having any of it. And my favourite chemo nurse is a) on holiday in Mauritius - lucky devil and is b) going back to Australia in August or September - for good..... wahhhhhhh! (Why is it that everyone I know is moving to Australia??? OK, slight exaggeration perhaps but this is about the 4th person I know to have gone/be going to Oz. What did I do?!)
I'm following my instinct here, which, as Dorothy from Grammology quite rightly said, is often the sure-fire test.
So, no article for me. I was disappointed initially, but perhaps it's for the best. I like my readers and who knows what would happen if even more people came this way.....? But I suppose part of me has ambition - sees other folk doing articles or writing for other blogs and websites and thinks 'why shouldn't I?'. That's life, I guess!
In other news, I went to to Boston last week to see Eddie Izzard's new tour - 'Stripped' along with my brother. Fahbulous! Very funny. I thought he was better than when I went to see 'Sexie' live - I was slightly disappointed then. But this, was brilliant. So I was super glad I'd gone and that the feeling unwell that I did for the rest of the week held off until *after* I'd been. Alternatively, seeing Eddie Izzard gave me a stomach upset....... nah. It was the capecitabine. I really did think I'd picked up a bug on the plane because the capecitabine symptoms had been so minor and now I was feeling nauseous as well as having an upset lower digestive tract. But I saw The Precious Oncologist on Wednesday (why, yes, the day after I got off the red-eye from Boston!) she immediately said it was the capecitabine and that I needed an extra week off and it was time to reduce the dosage. I was gutted. I am gutted. It's my aim to keep going as long as possible on each dosage level - because each lowering is a step closer to not having any more options. And I'd hoped to keep going on capecitabine for *years*. (I have *nothing* to base anything about length of time etc on, it's just my arbitrary aim.) So, I've had 11 cycles on 2300mg twice daily. She went on to say that I had gone on at this dosage for longer that any patient she'd ever had and that most people managed 2 or 3 cycles at this dosage before reducing. So, actually, I've done bloody brilliantly. But I still wish I could have kept on a little longer..... but she went on to say that if we carried on at this dose - I'd probably get a few days into the cycle, become really unwell and then we'd have to have longer than an extra week off and that the important thing is to keep the cycles going on the 2 weeks on, 1 off rhythm. I don't really understand this - how can than be more important than the dosage level? It's illogical to me so I conclude I don't have enough information and that I'll be asking some questions when I see her next week.
I also had a CT scan on Wednesday - so hopefully I'll get the results next week too. I hope they'll continue to be good and show that the capecitabine is still working. Otherwise there'll be a whole slew of points between here and No Options Left crossed off the list (this is a pretend list - there isn't actually a list). On a more general note - having a cannula put in after a transatlantic flight plus diarrhoea is quite a challenge - the dehydration makes the veins *vanish*. Hence, I have a lovely bruise where apparently we hit a valve. Did you know you had valves in your veins? I didn't. I do now. Plus we had to downgrade to a yellow cannula as the blue just wasn't having any of it. And my favourite chemo nurse is a) on holiday in Mauritius - lucky devil and is b) going back to Australia in August or September - for good..... wahhhhhhh! (Why is it that everyone I know is moving to Australia??? OK, slight exaggeration perhaps but this is about the 4th person I know to have gone/be going to Oz. What did I do?!)
Thursday, April 24, 2008
Dilemma and demand
I am experiencing something of a dilemma and, it being a dilemma, I'm not sure what to do. So I'm asking you some questions.
The story is thus:
Last week I was contacted by a magazine belonging to a U.S. cancer organisation who asked if I would be willing to have one of my blogposts highlighted along with a little interview in their publication. I was flattered and possibly a little excited - it was quite a boost to the confidence to have other people consider that my writing is worthy of this; plus I write this not just for me but for other people with cancer or treating people with cancer.
So, I checked out their site to see if I thought they were something that I would be willing to be connected to and decided they seemed OK. I replied with a tentative 'yes' and asked which post they were interested in.
The person replied pointing to the post Truce - 'huh' I thought; I don't consider that one of my best - it's OK, not bad; but not the best. But I thought that would be OK. I was also asked if I would have a problem with them publishing my real name.
I had to think about that one - people I've corresponded with by email will know that 'Sepha' is not my 'given' name; but if I write to you, I will always sign that 'given' name. I'm not trying to fool you, or lie to you - Sepha *is* me, the things I say here are truer because I use that name. If frees me to be *more* honest with you. Sepha dates from when I very first started using the internet and I didn't know how 'safe' it was to tell people who I was; how much information I wanted the world outside of my control or knowledge to know about me - so Sepha was my alter-ego if you like. Years later when cancer struck and I needed an outlet, Sepha was resurrected to be my blogging alter-ego - again, I didn't know how 'safe' or 'sensible' it was to put my whole self out on display and I was aware that not everything I say on this blog is for everyone's knowledge. Some might say, then why are you posting it on the internet? Why not just keep a diary? The answer, I suppose, is that blogging is more than just recording events; it's reaching out to other people, it's searching for common ground and acceptance and in my case, it was searching for empathy.
I *hurt*, I still do, and somehow that hurt was so great that I needed outside acknowledgement of it, affirmation that I was heard. Somehow, trying to make you, out there, understand what was happening to me helped me, still helps me, to bear it; to keep breathing. Knowing that sometimes I don't cry alone is a comfort. I don't do it because I get some delight out of upsetting other people - does that make any sense?
Where am I going with this, you're thinking. I'm going on to explain to you that not everyone in my world knows about my blog. I have never specifically mentioned it to my family (although I have my suspicions that some at least may know about it, may possibly read it); my partner knows I blog but I have never given him the URL; a small number of my in-person friends know about it, most do not; my work colleagues do not know about it; my guides and the majority of my guiding world do not know about it. And in some of those cases, that is absolutely right. For example, I do not think it would be appropriate for girls for whom I am in a mentoring-type position to be aware of my emotional state. I do not think it would be appropriate for my work colleagues to read about how I feel about working; to know my dilemmas about my job.
Why have I not shared it with friends and family? I'm not sure, to be honest. All my life I've tended to be fairly reticent about my feelings, even with close family and friends. In some cases I equate feelings with weakness (of myself, not others). I have a tendency to feel (rightly or wrongly) that when people know how I truly feel then they have me at a disadvantage; they can hurt me, they will think less of me; they will think I am weak and incapable. Logically, when I look at this, I see that in the case of family and friends, this is ludicrous. My family and my friends would *never* think these things about me and these are the people who are important to me.
The other reason that I use to justify this lack of advertisement is that I don't want to make the people I care about, unhappy. I don't want them to be sad. And I feel that the things I write, are sad. Isn't it enough that *I* am miserable without making others around me feel bad too?
Going back to the dilemma - I thought about all of this and I responded saying that I would be OK with them publishing my first name; but I would prefer they didn't publish my surname. In my head I was thinking that I didn't want people I've met or known 'googling' my name and being led to my blog but that I didn't want to hide completely - because that would feel wrong too. I was looking to exercise a little control over the information available about me on the internet. I thought this was reasonable and I felt like I had been asked what I would like; which was good.
My bad .
The response I had in return was that it was the magazine's policy to always publish the full names of their contributors. I was a bit taken aback - as I had read the previous message as one asking how I would like to be represented.
I replied, explaining that I wasn't looking for anonymity, as such; I was looking to control who my blog was read by and how it was found - especially given how honest and raw I am in some of my posts; and that I hoped we could find a compromise.
Well, no, not really was the reply. Apparently not using the full name of a source or using a pseudonym would "imply that cancer is something that is shameful and to be kept hidden".
Wow.
For the record, I don't think those things and I tell most people I have cancer and am not known for pulling my punches in talking about it. I've spoken at a medical conference to doctors about the emotional impact of cancer treatment; I've spoken to various groups of people for one of the UK's cancer charities - and yes, they did know my name. They knew my name because I always say it when I begin speaking. I guess I'm trying to say, I don't see myself as hiding; I see myself as suiting the information about myself for the audience I'm dealing with - from my perspective and theirs. That information is sacred - because it isn't just facts and figures; it's me - it.is.me. It's about *my* body and *my* feelings and what am I if I am not those?
And I felt really sad when I got their response, and a bit angry - because I didn't go looking for this opportunity; they came to me, but apparently I'm only acceptable under certain circumstances. And I would truly debate with anyone who tried to say that what I write means less because of the name attached to it. No-one knows my name anyway; I could say I was Minnie Mouse - it's not like my name is world-renowned and carries some particular authority. My *name* doesn't write these words; it can't type or hold a pen; my name can't even *think* these words; it's the me inside the name that does those things. And you know what? I have many names; my dad calls me one version of my name, my brother another, my partner something *completely* different and in part of my head, and out there with you, my name is Sepha. So, which is the 'real' one? Which one's the authority?
So now I am in dilemma - part of me wants to do this; feels obliged to do this; feels I *should* do this - because maybe this sharing could help someone else get through a cancer experience. Perhaps part of my having cancer is about my learning to share; is about me being the sacrificial lamb, if you like but equally, perhaps that's just a load of codswallop.
So, what do you think? Am I hiding but trying to pretend I'm not? Am I trying to be too controlling? How much do you share about yourself on the internet? Would you be prepared to have your full name out there attached to a link to your blog? I'm not asking what you think I should do specifically - I'm genuinely interested to find out how much about yourself you're prepared to put on the internet. For example, do you have different email addresses for different purposes - like commenting on blogs for instance? Do you put your full name on comments? Do you put any part of your 'given' name on comments?
In the past I've been very nice and asked for your comments; now I'm demanding - if you have visited this blog on more than one occasion deliberately then I want you to tell me what you think - no judging on my part (although I do like being able to respond to your comments by email; so when you don't include that I do feel a bit sad - because often I really want to say 'thanks' or to say more to you) That said; on this occasion I don't mind because I want you to say what you think and if you need to do that anonymously then *I'm* happy for you to do that; if you'd like to use a pseudonym then *I'm* happy for you to do that. Let's talk, to each other about this - I think it's important.
p.s. the person I've been corresponding with on this matter has never been *anything* other than nice in the messages I've had - I simply haven't liked the stance that this publication has chosen to take; so no personal-style attacks please - I won't publish them.
The story is thus:
Last week I was contacted by a magazine belonging to a U.S. cancer organisation who asked if I would be willing to have one of my blogposts highlighted along with a little interview in their publication. I was flattered and possibly a little excited - it was quite a boost to the confidence to have other people consider that my writing is worthy of this; plus I write this not just for me but for other people with cancer or treating people with cancer.
So, I checked out their site to see if I thought they were something that I would be willing to be connected to and decided they seemed OK. I replied with a tentative 'yes' and asked which post they were interested in.
The person replied pointing to the post Truce - 'huh' I thought; I don't consider that one of my best - it's OK, not bad; but not the best. But I thought that would be OK. I was also asked if I would have a problem with them publishing my real name.
I had to think about that one - people I've corresponded with by email will know that 'Sepha' is not my 'given' name; but if I write to you, I will always sign that 'given' name. I'm not trying to fool you, or lie to you - Sepha *is* me, the things I say here are truer because I use that name. If frees me to be *more* honest with you. Sepha dates from when I very first started using the internet and I didn't know how 'safe' it was to tell people who I was; how much information I wanted the world outside of my control or knowledge to know about me - so Sepha was my alter-ego if you like. Years later when cancer struck and I needed an outlet, Sepha was resurrected to be my blogging alter-ego - again, I didn't know how 'safe' or 'sensible' it was to put my whole self out on display and I was aware that not everything I say on this blog is for everyone's knowledge. Some might say, then why are you posting it on the internet? Why not just keep a diary? The answer, I suppose, is that blogging is more than just recording events; it's reaching out to other people, it's searching for common ground and acceptance and in my case, it was searching for empathy.
I *hurt*, I still do, and somehow that hurt was so great that I needed outside acknowledgement of it, affirmation that I was heard. Somehow, trying to make you, out there, understand what was happening to me helped me, still helps me, to bear it; to keep breathing. Knowing that sometimes I don't cry alone is a comfort. I don't do it because I get some delight out of upsetting other people - does that make any sense?
Where am I going with this, you're thinking. I'm going on to explain to you that not everyone in my world knows about my blog. I have never specifically mentioned it to my family (although I have my suspicions that some at least may know about it, may possibly read it); my partner knows I blog but I have never given him the URL; a small number of my in-person friends know about it, most do not; my work colleagues do not know about it; my guides and the majority of my guiding world do not know about it. And in some of those cases, that is absolutely right. For example, I do not think it would be appropriate for girls for whom I am in a mentoring-type position to be aware of my emotional state. I do not think it would be appropriate for my work colleagues to read about how I feel about working; to know my dilemmas about my job.
Why have I not shared it with friends and family? I'm not sure, to be honest. All my life I've tended to be fairly reticent about my feelings, even with close family and friends. In some cases I equate feelings with weakness (of myself, not others). I have a tendency to feel (rightly or wrongly) that when people know how I truly feel then they have me at a disadvantage; they can hurt me, they will think less of me; they will think I am weak and incapable. Logically, when I look at this, I see that in the case of family and friends, this is ludicrous. My family and my friends would *never* think these things about me and these are the people who are important to me.
The other reason that I use to justify this lack of advertisement is that I don't want to make the people I care about, unhappy. I don't want them to be sad. And I feel that the things I write, are sad. Isn't it enough that *I* am miserable without making others around me feel bad too?
Going back to the dilemma - I thought about all of this and I responded saying that I would be OK with them publishing my first name; but I would prefer they didn't publish my surname. In my head I was thinking that I didn't want people I've met or known 'googling' my name and being led to my blog but that I didn't want to hide completely - because that would feel wrong too. I was looking to exercise a little control over the information available about me on the internet. I thought this was reasonable and I felt like I had been asked what I would like; which was good.
My bad .
The response I had in return was that it was the magazine's policy to always publish the full names of their contributors. I was a bit taken aback - as I had read the previous message as one asking how I would like to be represented.
I replied, explaining that I wasn't looking for anonymity, as such; I was looking to control who my blog was read by and how it was found - especially given how honest and raw I am in some of my posts; and that I hoped we could find a compromise.
Well, no, not really was the reply. Apparently not using the full name of a source or using a pseudonym would "imply that cancer is something that is shameful and to be kept hidden".
Wow.
For the record, I don't think those things and I tell most people I have cancer and am not known for pulling my punches in talking about it. I've spoken at a medical conference to doctors about the emotional impact of cancer treatment; I've spoken to various groups of people for one of the UK's cancer charities - and yes, they did know my name. They knew my name because I always say it when I begin speaking. I guess I'm trying to say, I don't see myself as hiding; I see myself as suiting the information about myself for the audience I'm dealing with - from my perspective and theirs. That information is sacred - because it isn't just facts and figures; it's me - it.is.me. It's about *my* body and *my* feelings and what am I if I am not those?
And I felt really sad when I got their response, and a bit angry - because I didn't go looking for this opportunity; they came to me, but apparently I'm only acceptable under certain circumstances. And I would truly debate with anyone who tried to say that what I write means less because of the name attached to it. No-one knows my name anyway; I could say I was Minnie Mouse - it's not like my name is world-renowned and carries some particular authority. My *name* doesn't write these words; it can't type or hold a pen; my name can't even *think* these words; it's the me inside the name that does those things. And you know what? I have many names; my dad calls me one version of my name, my brother another, my partner something *completely* different and in part of my head, and out there with you, my name is Sepha. So, which is the 'real' one? Which one's the authority?
So now I am in dilemma - part of me wants to do this; feels obliged to do this; feels I *should* do this - because maybe this sharing could help someone else get through a cancer experience. Perhaps part of my having cancer is about my learning to share; is about me being the sacrificial lamb, if you like but equally, perhaps that's just a load of codswallop.
So, what do you think? Am I hiding but trying to pretend I'm not? Am I trying to be too controlling? How much do you share about yourself on the internet? Would you be prepared to have your full name out there attached to a link to your blog? I'm not asking what you think I should do specifically - I'm genuinely interested to find out how much about yourself you're prepared to put on the internet. For example, do you have different email addresses for different purposes - like commenting on blogs for instance? Do you put your full name on comments? Do you put any part of your 'given' name on comments?
In the past I've been very nice and asked for your comments; now I'm demanding - if you have visited this blog on more than one occasion deliberately then I want you to tell me what you think - no judging on my part (although I do like being able to respond to your comments by email; so when you don't include that I do feel a bit sad - because often I really want to say 'thanks' or to say more to you) That said; on this occasion I don't mind because I want you to say what you think and if you need to do that anonymously then *I'm* happy for you to do that; if you'd like to use a pseudonym then *I'm* happy for you to do that. Let's talk, to each other about this - I think it's important.
p.s. the person I've been corresponding with on this matter has never been *anything* other than nice in the messages I've had - I simply haven't liked the stance that this publication has chosen to take; so no personal-style attacks please - I won't publish them.
Tuesday, April 22, 2008
Read and inwardly digest
Doh! Doh! Doh!
I've buggered up my sock *twice* today, *twice* I tell you!
First I overknitted the heels - 42 rows instead of *22* (I thought it was looking a *bit* odd....)
And now knitting the gusset (*hate* that word - yak!) I've decreased every round instead of every other round.....this may be a lesson in
a) read the instructions and
b) follow the instructions once you've read them please
Arghy, arghy, argh!
Frogging for me this evening!!
I've buggered up my sock *twice* today, *twice* I tell you!
First I overknitted the heels - 42 rows instead of *22* (I thought it was looking a *bit* odd....)
And now knitting the gusset (*hate* that word - yak!) I've decreased every round instead of every other round.....this may be a lesson in
a) read the instructions and
b) follow the instructions once you've read them please
Arghy, arghy, argh!
Frogging for me this evening!!
Sunday, April 20, 2008
I'm in the fil-ums
Quite a while ago I was asked to participate in a short documentary film about complementary therapy services offered at my hospital - the Royal Free Hampstead. I agreed, because, as you know, I usually have plenty to say. This was an interesting little film because it was actually made by a film student who was looking at using film in dance and movement and she was interested in the movement of massage as well as its importance.
So she interviewed me and I yabbered on and then she edited it and interviewed lots of other people and came up with her finished product which is now available to view on the hospital website......
I think they've done a bum job of uploading it and it seems to freeze my browser - Firefox - it may be different with other browsers or by downloading it. Do let me know if you have any luck with it or if it's a pain - I'll complain about it then :)
So she interviewed me and I yabbered on and then she edited it and interviewed lots of other people and came up with her finished product which is now available to view on the hospital website......
I think they've done a bum job of uploading it and it seems to freeze my browser - Firefox - it may be different with other browsers or by downloading it. Do let me know if you have any luck with it or if it's a pain - I'll complain about it then :)
Friday, April 18, 2008
Follow me, follow me down to the wallow
I have an 'upper respiratory tract infection' according to The Princess Oncologist - but it didn't impress her.......I think you have to neutropaenic and have no white blood cell count before you can impress her. In other words, I have a cold and am whingey. Blah - my eyes do not want to be open but if I lie down then I can't really breathe - bummer. Wah!
I'm also supposed to be making quiche Lorraine, brownies and my super-duper, best ever ragu-for-lasagne for next weekend. Oh, and putting the towels on to wash. None of which are appealing massively to me since they would require getting out of bed and I have a cold! Wah! Want to wallow - despite the fact that I can breathe better and would have less heartburn if I didn't recline......
Oh, and we're going to dinner with friends tonight - I'm going to be *such* good company - not. My eyes won't stop watering - note to self: don't wear eye makeup, you will rub eyes and look like a panda all evening......
The Oncologist is now The Princess or Precious Oncologist and I want a t-shirt that proclaims "Your oncologist may be great but mine is a Princess" or alternatively "mine has style". This would amuse her and in my book, an amused oncologist is one who's on your side (my side). Plus, I'm an amusing person; The Dear Other has proclaimed it so.
I made The Dear Other cry - mean ol' me. As you will have noticed, I've not exactly been happy-happy, joy-joy recently and I got cross with him and was shouty (which I *never* do! This is true - I don't do conflict and shouting and getting mad with The Dear Other) and then I got all cry-y and said sad things about Not Being Happy and then he cried because he wanted to make it all better and he couldn't and it made him sad. And I felt really mean and horrid for making him sad because I don't want him to be sad. Wah. Tears all round with an extra helping of guilt on the side for me. I feel a bit better now. Don't know why. Don't know how long it will last.
I have to go hat shopping for my friend's wedding - Sweet Camden Lass has promised to come with me and she doesn't know it but she alone will be responsible for making sure I don't look like a complete 'nana. I trust her implicitly - I also think she knows where to get hats *from*. Me, I'd go to John Lewis and that would be it - and maybe that's the correct place to go, but I'm not really sure myself.
I'm also supposed to be making quiche Lorraine, brownies and my super-duper, best ever ragu-for-lasagne for next weekend. Oh, and putting the towels on to wash. None of which are appealing massively to me since they would require getting out of bed and I have a cold! Wah! Want to wallow - despite the fact that I can breathe better and would have less heartburn if I didn't recline......
Oh, and we're going to dinner with friends tonight - I'm going to be *such* good company - not. My eyes won't stop watering - note to self: don't wear eye makeup, you will rub eyes and look like a panda all evening......
The Oncologist is now The Princess or Precious Oncologist and I want a t-shirt that proclaims "Your oncologist may be great but mine is a Princess" or alternatively "mine has style". This would amuse her and in my book, an amused oncologist is one who's on your side (my side). Plus, I'm an amusing person; The Dear Other has proclaimed it so.
I made The Dear Other cry - mean ol' me. As you will have noticed, I've not exactly been happy-happy, joy-joy recently and I got cross with him and was shouty (which I *never* do! This is true - I don't do conflict and shouting and getting mad with The Dear Other) and then I got all cry-y and said sad things about Not Being Happy and then he cried because he wanted to make it all better and he couldn't and it made him sad. And I felt really mean and horrid for making him sad because I don't want him to be sad. Wah. Tears all round with an extra helping of guilt on the side for me. I feel a bit better now. Don't know why. Don't know how long it will last.
I have to go hat shopping for my friend's wedding - Sweet Camden Lass has promised to come with me and she doesn't know it but she alone will be responsible for making sure I don't look like a complete 'nana. I trust her implicitly - I also think she knows where to get hats *from*. Me, I'd go to John Lewis and that would be it - and maybe that's the correct place to go, but I'm not really sure myself.
Tuesday, April 08, 2008
Great big tears
Hello.
Me here.
Still here.
I really don't know what to say.
There's not bad news, it's just the same old overwhelming sadness.
And that crying thing where you lie on a bathroom floor and can't breathe through the sobbing.
I saw old, good friends at the weekend. And I saw photos from my past and I just couldn't deal with it. Photographs of me with this bright smile of *real* contentment and happiness; with eyes that shone with innocence; at ease with myself and the world; with endless possibilities and opportunities and potential - and I could not see myself in her. I feel like my smiles, my eyes are never like that any more - they hold shadows and tears - there is a tension in them constantly. And I feel like I have no possibilities or opportunities - no potential anymore. Any happiness, any laughter is tainted, is qualified.
One photo is burned onto my memory now - a simple one, I'm standing at a friends door - but the smile and the eyes - I look so open, so trusting, so happy. I feel like I've done that girl wrong, I've betrayed her. I've let her down. Destroyed her. And she didn't deserve that - she should have been anything she wanted.
And so I retreated and sat on the floor of a bathroom and wept in the arms of a friend who, by rights, should have been crying in my arms - great shuddering, sobbing tears that shake your whole body - that leave you with those funny, sharp intakes of breath long after the tears have subsided.
I don't want this. I don't want to live with this. I don't want to die from this.
I'm so sorry, I didn't mean for this to happen to you, to me, to *her* - the other me. I'm sorry.
Me here.
Still here.
I really don't know what to say.
There's not bad news, it's just the same old overwhelming sadness.
And that crying thing where you lie on a bathroom floor and can't breathe through the sobbing.
I saw old, good friends at the weekend. And I saw photos from my past and I just couldn't deal with it. Photographs of me with this bright smile of *real* contentment and happiness; with eyes that shone with innocence; at ease with myself and the world; with endless possibilities and opportunities and potential - and I could not see myself in her. I feel like my smiles, my eyes are never like that any more - they hold shadows and tears - there is a tension in them constantly. And I feel like I have no possibilities or opportunities - no potential anymore. Any happiness, any laughter is tainted, is qualified.
One photo is burned onto my memory now - a simple one, I'm standing at a friends door - but the smile and the eyes - I look so open, so trusting, so happy. I feel like I've done that girl wrong, I've betrayed her. I've let her down. Destroyed her. And she didn't deserve that - she should have been anything she wanted.
And so I retreated and sat on the floor of a bathroom and wept in the arms of a friend who, by rights, should have been crying in my arms - great shuddering, sobbing tears that shake your whole body - that leave you with those funny, sharp intakes of breath long after the tears have subsided.
I don't want this. I don't want to live with this. I don't want to die from this.
I'm so sorry, I didn't mean for this to happen to you, to me, to *her* - the other me. I'm sorry.
Tuesday, April 01, 2008
Maelstrom
What do you do when you're hyperventillating over lunch, and your hair?
Seriously, I do not know what to do.
Not eat lunch because it's simply too difficult to decide what to eat - when I don't want anything anyway and I'm just thinking about it because it's 'lunchtime' and I'll probably end up with another headache later if I don't eat. I'm not saying that I'm not hungry - I have no idea if I'm hungry or not anymore. I often find myself eating if someone else puts it down in front of me even when I didn't think I was hungry. I *cannot* do anything if someone asks me what I want for dinner later - the answer is 'nothing' and if they suggest things then it makes me feel ill. Not sick - just, sort of sickened - like they've brought up some unspeakable topic. But I'll probably eat it if it's put in front of me. Or some of it. And yet I've still mananged to put back on all the weight I lost with the chemo in 2005. Which is depressing, because that was the one thing I brought away with me from that - at least I'd lost that weight that I could stand to lose.
Food has become the enemy again I suppose.
And I get tied up in a quandry of what *should* I eat, what *ought* I to eat. Lots of fibre and fruits and vegetables are the *shoulds* and *oughts* - which can prove a bad idea if my stomach is heading diarrhoea-wards. But not eating them isn't good for a body either - and mine will tell me in no uncertain terms. Seriously, if I could farm out my digestive tract to some other source, I bloody would.
And my hair, is so long now, and people say it's pretty and it probably is; but I can't even stand to wash it or myself most days. (which is pretty shameful) The room or the water or both is/are never the right temperature for whatever I am. Plus, what's the point of having nice hair when it spends all day and all night pulled back from my face and neck because it makes me hot and claustrophobic? But I'm scared to have it cut off again - which is silly, because it grows really fast anyway - I don't want the curls to go, I don't want to re-adapt to different hair again. And If I have it cut off I want someone one who knows how the hell to deal with ringletty, curly hair. I mean, is bloody brilliant, because there aren't as many people with curly hair out there as there are with straight hair; so it goes without saying that most hairdressers will have more experience with straighter hair. And what if I have it cut so it's not such a mess, then I'll have to stop being such a mess in my dress and everything else. It'll raise the stakes.
And this all seems so miniscule, so irreverant when there are so many worse things out in the world.
What the hell is happening to me? Why does this stuff that would once have hardly caught my attention seem like the end of the world? Why has this combination of things reduced me to standing at the back door hyperventilating? And what does it all mean anyway? beacause if it meant only what it is on the surface then I wouldn't be in a state about it so this has got to be about something else really. So tired now and I've barely been up today.
Seriously, I do not know what to do.
Not eat lunch because it's simply too difficult to decide what to eat - when I don't want anything anyway and I'm just thinking about it because it's 'lunchtime' and I'll probably end up with another headache later if I don't eat. I'm not saying that I'm not hungry - I have no idea if I'm hungry or not anymore. I often find myself eating if someone else puts it down in front of me even when I didn't think I was hungry. I *cannot* do anything if someone asks me what I want for dinner later - the answer is 'nothing' and if they suggest things then it makes me feel ill. Not sick - just, sort of sickened - like they've brought up some unspeakable topic. But I'll probably eat it if it's put in front of me. Or some of it. And yet I've still mananged to put back on all the weight I lost with the chemo in 2005. Which is depressing, because that was the one thing I brought away with me from that - at least I'd lost that weight that I could stand to lose.
Food has become the enemy again I suppose.
And I get tied up in a quandry of what *should* I eat, what *ought* I to eat. Lots of fibre and fruits and vegetables are the *shoulds* and *oughts* - which can prove a bad idea if my stomach is heading diarrhoea-wards. But not eating them isn't good for a body either - and mine will tell me in no uncertain terms. Seriously, if I could farm out my digestive tract to some other source, I bloody would.
And my hair, is so long now, and people say it's pretty and it probably is; but I can't even stand to wash it or myself most days. (which is pretty shameful) The room or the water or both is/are never the right temperature for whatever I am. Plus, what's the point of having nice hair when it spends all day and all night pulled back from my face and neck because it makes me hot and claustrophobic? But I'm scared to have it cut off again - which is silly, because it grows really fast anyway - I don't want the curls to go, I don't want to re-adapt to different hair again. And If I have it cut off I want someone one who knows how the hell to deal with ringletty, curly hair. I mean, is bloody brilliant, because there aren't as many people with curly hair out there as there are with straight hair; so it goes without saying that most hairdressers will have more experience with straighter hair. And what if I have it cut so it's not such a mess, then I'll have to stop being such a mess in my dress and everything else. It'll raise the stakes.
And this all seems so miniscule, so irreverant when there are so many worse things out in the world.
What the hell is happening to me? Why does this stuff that would once have hardly caught my attention seem like the end of the world? Why has this combination of things reduced me to standing at the back door hyperventilating? And what does it all mean anyway? beacause if it meant only what it is on the surface then I wouldn't be in a state about it so this has got to be about something else really. So tired now and I've barely been up today.
Friday, March 28, 2008
Lonely.....I'm sure there's a song about that
Apologies for the statelite-link pause in blogging - my laptop was in crisis and lost the ability to run on mains power or charge the battery. Whaaaa! I now have a laptop on loan (thank you!) and am waiting for a new one to materialise - well, be delivered. Soon. I hope. Hint hint delivery people.
It was shocking how cut off I felt without you all!!! You were missed! :)
I'm feeling quite lonely at the moment.
My brother came over from the States to visit me for a week - which was lovely. It's really nice when people come to visit me; it's just as nice to see them when I go visiting them, but it's special when they come to me. :) So we did a bunch of touristy things around London - like the Eye and walking along the river and the crack at Tate Modern and the opticians in Hampstead (What? You haven't heard of them? Huh, who would have thought...) I also took him to the hospital with me and he distracted me in the chemosuite when they were taking my bloods (not too much of a bloodbath this time, which is strangely disappointing) and he came along to my clinic appointment where he met my Oncologist (hello!); I tried to tell him that she could be scary but he is made of braver stuff than me (plus it was a rather unexciting appointment - nothing for me to report and not a lot for her to report - although I did get another tick in my notes - do I get a reward if I get a certain number of ticks? A chocolate brownie perhaps?) I was glad that he came along and saw where I was being treated and met the people who look after me. I hope it made him feel that I was in good hands and made sure he didn't feel out of the loop. I think things can be more frightening when you don't really know what's going on. Plus, he has the ability to make me laugh at all sorts of things. He went back to our old home in Leeds for the weekend and came back with this drawing of a cartoon character he'd invented way back when - Soup-Man! Who swam around in soup and had a straw for sucking it up and a propeller for manouveuring and stirring the soup around - it was hilarious - and such a wonderful example of unrestrained imagination.......
We also went to Spamalot and to see the Japanese Drummers - Yamato. Both really good - but the drumming was bloody brilliant - I was really glad he'd insisted we go (even if I did have a worrying few minutes on arrival at the theatre where I thought I might end up spending the evening in the Ladies!!!) You could feel the vibrations from the drums and it was done with such splashes of humour. We were on the 3rd row so had a really good closeup view - although from the side. So if you get a chance to see them - go like a shot!
But now he's gone home again. And I miss him. And it reminds me that I feel pretty lonely here. Which makes me sad. I end up feeling like I'm making up reasons to go out - so I just don't. What's the point? What am I going to do? Going and seeing galleries and shows and the like on your own isn't so much fun. Does this mean I should go back to work? But the Dear Other doesn't really want me to - then I'll spend less time with him and I'll have to be in London more of the time. Plus, I'm not really feeling like working. But sitting around on my own isn't good for me either. But I have no enthusiasm for doing lots of the stuff I *could* be doing. ::sigh:: Whatever.
It's hard. Life is hard at the moment. It's been worse, mind, but still not brilliant. And all sorts of things are casting their shadow at the moment - I have 2 hen weekends and consequently 2 weddings to go to over the next few months. None of them are mine. Out of all of my friends I am the person who has been with their partner the longest - so how come everyone gets to get married before me? And there's a complicated answer in there; involving the necessity for the Dear Other and I to be living in the same house in the same town and currently that means me leaving London for a place where I know even fewer people and have even less to do at my doorstep; not to mention a long way between me and the hospital and my Oncologist and her team. And I'm not prepared to move away from them - I think they're bloody good at their jobs, I think they care fantastically for their patients, I think they're incredibly patient with me (I'm not known for being easygoing) and why would I leave a top London teaching hospital with big name Doctors for one in a Midlands market-town (which is perfectly adequate, I'm sure).
So, no, I'm not the one in the flouncy dress (not my style anyway - I'd probably be a bit more imaginative and personal. Plus, I currently couldn't wear pretty shoes because my feet would die and fall off - getting married in trainers wasn't quite the effect I had in mind.) Blah - all irrelevant anyway - apart from the shoes bit - I *will* have to wear shoes to go to other people's weddings. Maybe my feet will die and fall off anyway.
What a long and very wingey post this is turning out to be - sorry about that.
BTW - I'm linked to in a Blogher post for my Letter to My Body post - I'm very honoured but I suspect that it's not the sort of thing people want to read. This is quite a depressing blog at times and cancer is a scary topic - I guess I don't blame you for avoiding it - I understand the discomfort and fear that even the word 'cancer' can evoke; but remember, if you do avoid or ignore this blog, you're ignoring me and I'm real and what's happening to me is real and I'm afraid it doesn't become any less real if you don't read about it......
Time to stop blathering now - thank you to all you people out there who read me all the time, through the good and less good and the frankly awful - you're the tops and it really makes my day when you drop me a line or comment to tell me you're there and then I know I'm not so alone.
It was shocking how cut off I felt without you all!!! You were missed! :)
I'm feeling quite lonely at the moment.
My brother came over from the States to visit me for a week - which was lovely. It's really nice when people come to visit me; it's just as nice to see them when I go visiting them, but it's special when they come to me. :) So we did a bunch of touristy things around London - like the Eye and walking along the river and the crack at Tate Modern and the opticians in Hampstead (What? You haven't heard of them? Huh, who would have thought...) I also took him to the hospital with me and he distracted me in the chemosuite when they were taking my bloods (not too much of a bloodbath this time, which is strangely disappointing) and he came along to my clinic appointment where he met my Oncologist (hello!); I tried to tell him that she could be scary but he is made of braver stuff than me (plus it was a rather unexciting appointment - nothing for me to report and not a lot for her to report - although I did get another tick in my notes - do I get a reward if I get a certain number of ticks? A chocolate brownie perhaps?) I was glad that he came along and saw where I was being treated and met the people who look after me. I hope it made him feel that I was in good hands and made sure he didn't feel out of the loop. I think things can be more frightening when you don't really know what's going on. Plus, he has the ability to make me laugh at all sorts of things. He went back to our old home in Leeds for the weekend and came back with this drawing of a cartoon character he'd invented way back when - Soup-Man! Who swam around in soup and had a straw for sucking it up and a propeller for manouveuring and stirring the soup around - it was hilarious - and such a wonderful example of unrestrained imagination.......
We also went to Spamalot and to see the Japanese Drummers - Yamato. Both really good - but the drumming was bloody brilliant - I was really glad he'd insisted we go (even if I did have a worrying few minutes on arrival at the theatre where I thought I might end up spending the evening in the Ladies!!!) You could feel the vibrations from the drums and it was done with such splashes of humour. We were on the 3rd row so had a really good closeup view - although from the side. So if you get a chance to see them - go like a shot!
But now he's gone home again. And I miss him. And it reminds me that I feel pretty lonely here. Which makes me sad. I end up feeling like I'm making up reasons to go out - so I just don't. What's the point? What am I going to do? Going and seeing galleries and shows and the like on your own isn't so much fun. Does this mean I should go back to work? But the Dear Other doesn't really want me to - then I'll spend less time with him and I'll have to be in London more of the time. Plus, I'm not really feeling like working. But sitting around on my own isn't good for me either. But I have no enthusiasm for doing lots of the stuff I *could* be doing. ::sigh:: Whatever.
It's hard. Life is hard at the moment. It's been worse, mind, but still not brilliant. And all sorts of things are casting their shadow at the moment - I have 2 hen weekends and consequently 2 weddings to go to over the next few months. None of them are mine. Out of all of my friends I am the person who has been with their partner the longest - so how come everyone gets to get married before me? And there's a complicated answer in there; involving the necessity for the Dear Other and I to be living in the same house in the same town and currently that means me leaving London for a place where I know even fewer people and have even less to do at my doorstep; not to mention a long way between me and the hospital and my Oncologist and her team. And I'm not prepared to move away from them - I think they're bloody good at their jobs, I think they care fantastically for their patients, I think they're incredibly patient with me (I'm not known for being easygoing) and why would I leave a top London teaching hospital with big name Doctors for one in a Midlands market-town (which is perfectly adequate, I'm sure).
So, no, I'm not the one in the flouncy dress (not my style anyway - I'd probably be a bit more imaginative and personal. Plus, I currently couldn't wear pretty shoes because my feet would die and fall off - getting married in trainers wasn't quite the effect I had in mind.) Blah - all irrelevant anyway - apart from the shoes bit - I *will* have to wear shoes to go to other people's weddings. Maybe my feet will die and fall off anyway.
What a long and very wingey post this is turning out to be - sorry about that.
BTW - I'm linked to in a Blogher post for my Letter to My Body post - I'm very honoured but I suspect that it's not the sort of thing people want to read. This is quite a depressing blog at times and cancer is a scary topic - I guess I don't blame you for avoiding it - I understand the discomfort and fear that even the word 'cancer' can evoke; but remember, if you do avoid or ignore this blog, you're ignoring me and I'm real and what's happening to me is real and I'm afraid it doesn't become any less real if you don't read about it......
Time to stop blathering now - thank you to all you people out there who read me all the time, through the good and less good and the frankly awful - you're the tops and it really makes my day when you drop me a line or comment to tell me you're there and then I know I'm not so alone.
Sunday, March 16, 2008
How do I keep from singing?
Well, I've cheered up a bit - but that's not saying much since my inclination to get out of bed very much this weekend has been hovering around the nil part of the scale.
But I have finished slating myself for the time being. You know, you say these things and it gets it out of your brain a bit. For a time, anyway.
What would I say if were able to think something *positive* about myself?
I'd be grateful for the lungs and vocal chords that trained for over 5 years to produce fine sounds.
I'd be grateful for the body I had.
Um, that might be it.
Well, you can't say I didn't try....
The Dear Other is determined to appear in this blog post - now he's telling me I have an evil look on my face since I'm appeasing him. There's no satisfying...... ;)
The end. :)
But I have finished slating myself for the time being. You know, you say these things and it gets it out of your brain a bit. For a time, anyway.
What would I say if were able to think something *positive* about myself?
I'd be grateful for the lungs and vocal chords that trained for over 5 years to produce fine sounds.
I'd be grateful for the body I had.
Um, that might be it.
Well, you can't say I didn't try....
The Dear Other is determined to appear in this blog post - now he's telling me I have an evil look on my face since I'm appeasing him. There's no satisfying...... ;)
The end. :)
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