More travel insurance

To be clear - they did insure me in the end - as a 'goodwill gesture'; but probably won't do so again.
I cried - no, I'll be honest, I bawled down the phone at them to the extent that I was barely intelligible while giving my credit card details. So much so that the woman who was dealing with me became so upset that someone else had to take over.
I hate that crying that ends up with those juddering breath/sobs that you can't stop.
They then told me to have a good trip and the woman who'd taken over said 'go and have a nice cup of tea.' - To which I replied 'I don't think tea cures cancer' - or I would've done if I'd been able to enunciate the words - it came out more like gobbledygook and I caught myself when she said she hadn't heard what I'd said and just said 'thank you'. Because, as I'd said to the other woman - it wasn't her fault and actually it was horribly unfair that she had to be the one to tell me this and to deal with a distraught person on the phone - it was the decision of the underwriters who, of course, don't deal with the customers. Which is pretty luxurious for them. I get really angry about things like that. I'm not surprised when my cancer means that I can't have what I want - but I get angry when people won't face me with it. If you're going to deny me something then you better tell me yourself and take it when I get upset and angry. You have to listen to me because I don't see why you should get to run away. Take responsibility for what you've caused. Be the big person and deal with my upset. Trust me, no matter how much you don't want to and no matter how uncomfortable it makes you - it's worse for me. It will always be worse for me. So don't be so cowardly. Worms.

So, I can no longer recommend InsurePink travel insurers if you have mets. I expect they're still not bad if you've had cancer but are now in the clear and to be fair, they have always been very easy to deal with and talk to when going through the medical questions. But if your cancer is metastatic: keep looking......

Oh, and sorry I upset you Mirriam.

Just ring! - Or actually, don't. Piss off.

Update:
They'll insure me as a one-off as a gesture of goodwill this time but underwriting changes all the time and I can try them in the future but they may not insure me (i.e won't insure me). Because they're not set up for helping people with metastases just people who've had cancer but are better now.

So there.

And it's not because I have cancer it's because I'm going to the U.S.A. - except of course, it *is* because of the cancer - because if I didn't have cancer they'd insure me.

I've had this underlying feeling this would be the last Christmas I'd have in the States. Perhaps I was right.

Oh hey! Merry Christmas! Have a great one!

***********************************************
Urgle,
waitwaitwaitwaitwait.
Ickety waiting for the Travel Insurance people to call me back and say if they're going to insure me or not.
The relevant person is only on the end of an email or something and I've been waiting for nearly 3 hours. Which is silly - they insured me a month ago for Thanksgiving - nothing has changed since then. There is no reason why they shouldn't be able to do it. I just have to wait until the supervisor ok's it.
So why am I researching other Insurance companies?.....

Brrrring, brrring

Oh, I'm so glad I rang up the breast care nursing team - I got some very useful advice.
.....
.....
.....
.....
Sorry, I was waiting for whomever that statement applies to to chime in and tell us all what the advice was - coz I could use some more!

Sadly, when I rang yesterday I got the useless-[hmmm, let's not use her real name....let's call her.....Meringue! Yes! That will do!].. I rang and got The Useless-Meringue! In the past she has on two occasions said she was going to call me back about something and then hasn't; plus she has told me diametrically the wrong information about one other query I had. Excellent! Sadly, again, the nurse I *do* like - because she is actually *helpful* - was not there..... :(
So, I said - pain! I have pain! You told me the Arimidex might do this! It hurts! Paracetamol and ibuprofen help a bit! Cocodamol or Neurofen Plus help more! But Codeine! They have codeine in which blocks up the old digestive tract as soon as I open the packet! Try not to take those too much! Heat helps!
The Useless-Meringue says: Yes! Arimidex can cause pain! Do you want to move your appointment forward!? (Me: NOOOOOO!) When was your last bone scan?! (Me: Areeeeghhhhh! September! Plus, NOOOOOO!) Are you sure it's the Arimidex?! (Me - in head: WTF?!! *I* don't know! How am I supposed to know? Me - out loud: No, I'm not sure - but the pain does improve with heat and movement (i.e. Probably muscular rather than bony pain) I'll speak to the Registrar and call you before I go home tonight! (Me: Thank you!)

9 hours later:
Me: Hah! She's not going to ring again!
Phone rings - points awarded
The Useless Meringue: Take the painkillers and call me again if they stop working! Call us and we'll move your appointment forward if you're worried!
Me:........OK.......do you have any other tips for anything that might help or, anything?
The Useless Meringue:...Not really!
Me:..........OK........well, can I have some more Lorazepam then please?
The Useless Meringue:......Yes! We can do that! We will send prescription to pharmacy and you can collect it!
Me:...............OK..........thank you. Um, will this go away eventually - how long does it last?
The Useless Meringue:..Well, some people find it goes away but for some people it doesn't. But! Arimidex is one of three drugs in the Aromatase family; so we can try you on one of the others if it doesn't go away!
Me:.....So, how long until you know if it will go away or not?
The U.M.: A few months!
Me:..........................OK.................right...............thanks. Ok. Right. Right.
The U.M.: Does exercise help?!
Me: Um, well, it's better when I've been moving around....
The U.M.: Light exercise! Try that!
Me:.....Right. Thanks........Bye!

So I am exactly where I was this time yesterday. Bar some Lorazepam. Which was off my own bat. You can't hear my head falling off my shoulders here - but it has.
I shouldn't be surprised.
Side-effects in the cancer world are just par for the course. The attitude isn't quite: "Tough. Suck it up." But it nearly is.
It makes the Dear Other absolutely livid. If he had made his millions he'd throw it all into research into alieviating side effects to cancer drugs. But he hasn't.

So, to recap:

Ouch.

Where I beg

Cancer related things are kicking my butt at the moment.
After months of jollying along, the big ol' sad has caught up with me again. Mostly because Arimidex is *hurting* at the moment. My lower back and hip joints *hurt*. Of the 'I'm uncomfortable standing, sitting and lying down' variety. Of the ibuprofen and paracetamol are not really cutting it pain-killing-wise at the moment. Of the 'only boiling heat seems to dull the pain enough to sleep' variety. There are only so many nights and days you can go through without starting to turn into some insane, about to eff and blind at anyone and everyone type of person.
And at moments like that my brain gets locked down into panic-mode. And all I can think is that the medication isn't working; the cancer is eating away my pelvis and spine and the end is nigh - woe is me - etc, etc.
And I scare myself when I get like that. I start to worry that I'm going to accidentally kill myself by taking too many painkillers - just because I got to that point where I was so desperate to make the pain stop for just a moment that I took another dose. I'm not saying I'm about to do that - in fact I'm bloody careful not to; but I can see so clearly how you could end up there.
I know I'm going to have to call my breast care nurse and at least get some sleeping/relaxant stuff from her. But I'm just so scared that they're going to whisk me in to have tests done and I'm going to end up not being able to go out to the States to be with my mum and my brother for Christmas. And we've booked the flights. And the insurance companies either won't insure me for anything cancer-related or they won't cover cancellation and curtailment. Either way it will be money wasted. And I won't get to have old-school Christmas.
Hate This.
The other morning the sun was shining so brightly but it was really cold - quite a rarity here; and I was so torn. It was beautiful but it made me sad. And I thought - I don't want to love like this; here, in this life of mine. But I can't go back to my old life. And I can't change the fact I have cancer. Wherever I go; whatever I change; I can't change that. If I do something new or different then I'm just dragging cancer off to the new and different spot with me. It doesn't go. It's the cartoon/old movie irons around the ankles.
Second verse, same as the first.
The other night I got home and just ended up crying and saying 'please'. Over and over and over again. Begging. With God, with the Universe; with the wind and the cloud and the rain and the snow and the ocean - with every wave in the sea. Just 'please' - please let the last four years have been a dream. That 'worst nightmare I've ever had' that was my first thought when they said it was cancer. Please. Please let this not be. Please. Please. I don't know how to ask any more nicely. I don't know how to be any better; any more deserving.
My miracle. Please.
Or maybe - if this has to be real - could I live in the dreamworld instead. Shut down this external existence and just live in dreams.
Please.

Please.

Long live internet shopping!

I have nearly recovered.
From Oxford Street and its environs on a Saturday in late November.
I managed not to kill anyone although the urge was strong.
Too many people in not enough space equals me wanting to batter said people.
And I had to deal with beads. About which I knew virtually nothing. I now know they're expensive. And that the shop I went to advertises things at different prices for different quantities on their website than they sell in store. I also couldn't find half of what I saw on their website. ::loathing::
Necessitating a further foray through the crowds to John Lewis, who also didn't have everything I wanted but did have preposterous queues which I stood in and debated whether I was going to faint and what I'd end up saying to nice ambulance personnel if I did so. Fainting was avoided. I was very hot. I get hotter when I get stressed and I Was Stressed. I was consequently distinctly soggy.
John Lewis also helpfully has those wheely baskets - I am in favour of. Sadly they don't have aisles large enough to accommodate the baskets and other people. ::groan::

This expedition meant I was not in favour of going to Sainsburys for something for dinner so we went to the Cambodian place round the corner. I had too much salt (I think) and having fallen asleep for 2 hours at 9.30pm woke up and then couldn't get back to sleep until gone 2am; because I was Hot and also felt like I'd had all the liquid sucked out of me and my tongue was sticking to the inside of my mouth. I did keep drinking water - but I think I was just sweating it off again.....
::blech::

Tongue has mostly unstuck itself now.

::snooze::

I'm really tired this evening.
I was late to bed last night and getting up for work this morning was hard. I really didn't want to go. It was OK once I was there and I seem to be getting back into the swing of the work fairly easily. I took my headphones in so I could listen to the radio whilst working which helped to stop be feeling a bit bored.
Guides were giddy and unwilling to listen this evening. ::sigh:: I am too tired to do a good job and keep feeling like I'm just not achieving enough for them. I feel like there are so many things we have to get done that they're not getting to do what they want to do. And I am doing precisely 0 delegating - I really bad at that. ::sigh::
I think I should go to bed.
I'm probably too tired to be even thinking about it all.
Night night.

I'm too hot and I'm too weighed down to say anything today.
Blah and other assorted words.
A head full of shoulds and oughts.
Going nowhere.
Weight.
Weighing.
Weighted.

The future.......

My brain just exploded. I just read the date 2016. The year, the date, 2016. Is it just me or does this look like a totally made up date? My brain can cope with 2012 - 2013 and beyond? Nope, doesn't exist.

I try, I really do!

Dumbo here went and bought a bunch of yarn for Christmas knitting yesterday and misremembered the U.K. equivalent of worsted yarn. I know have an excess of DK rather than Aran.
Moral of the story?
Don't yarn shop on impulse when you accidentally pass a yarn selling shop. When will I learn to bloody well write down things and not rely on memory - which I know to be rubbish. I should have restricted myself to the bamboo dpns which I knew I needed in 3mm for plane knitting and left it at that.....
::sigh::
I guess I'll be ransacking Ravelry for DK neck warmer patterns now.....if you've any ideas then flag 'em up for me please!

Moving on.
I am not one of Pavlov's dogs. (obviously)
Arimidex=worsening hot flushes - especially *sugar* connected ones.
But, I don't learn. You'd think that if you ate something with sugar in and then had an evil hot flush a few minutes later you'd start to associate them with the sugary things and not want to eat them any more. Nope, not here, doesn't work. I crave sugar, eventually cave and eat something sweet, have hot flush, throw open windows or pull off jumpers or remove socks or all of the aforementioned, curse myself for eating sugar. Rinse and repeat.
Utterly dumb.
Of course, it's pretty hard not to have any sugar but I hardly eat fruit; *definitely* no fruit juices - they're pure sugar; I fall down over cake/biscuits and I go through phases of craving coke (during which I loathe myself). But most of the time - water only. Really. Just water. By the pint.
If I'm on my own I probably won't eat hot food either. Eating anything will bring on hot flushes - so I put off eating until I'm really hungry, at which point I'm really hungry so I eat anything quick and easy. Hello biscuits. ::sigh::
I'm guessing the homoeopath may increase my Belladonna dosage in a couple of weeks time. Which helps. But it doesn't cure it all. Which is what I want. I'd like to sleep on my nice 100% cotton sheets as opposed to the poly-cotton mix ones which dry out more quickly when you're sweaty at night. I'd quite like not to be the person in my office still sitting there in t-shirts whilst everyone else is in sweaters.
::sigh::
End of whine.
Drip.

Cooking dangerously

Red Velvet cake is *very* red......making it turned my fingers red.
Plus it had the oddest icing I've ever had - which was a butter cream icing with the addition of some flour cooked in milk and then left to cool before being stirred into the butter cream. Tasted fine but had a slightly gelatinous texture and was shiny and not entirely smooth. Odd, not unpleasant, just odd.
I do like to live dangerously when having people round for dinner - I'm not one for cooking old favourites - it's new recipes down the line. Hence the Red Velvet plus improvised duck. Which fortunately turned out well.....I think I like to stress myself out!! ;)
Still, now we head into the season of Christmas food - not so much trial and error there. (Although I am contemplating whether I can make some version of mincemeat with dried blueberries and cranberries - my dad can't have raisins/currants/sultanas because of his kidneys. Technically he probably shouldn't have any dried fruit at all - high potassium levels - but I was hoping that since fresh blueberries and cranberries are ok we might get away with it......shall continue to ponder.)

Think warm thoughts

Because it's now wintery and dark at early o'clock in the evening I'm starting to feel all gloomy. So a quick sally into the summers' photo collection is in order. Join me!









A hot afternoon in York












Dressed up in my finery for a wedding








A sunny evening by Campbeltown Loch












An attack of the owls








This is what happens when I get hold of the camera - we get artsy photographs looking at perspective and focus....

Over my shoulder

I have six pairs of waterproof trousers hanging up in my bathroom - still covered in mud. I cunningly attempted to have a bath this morning whilst still leaving them hanging up. It wasn't entirely a success since I ended up with several leaves in the bath with me...... Tomorrow I will tackle them with a scrubbing brush and the shower attachment.
Of course, from my vantage point in the bath this morning I observed that one pair actually has a torn leg; given that most of them hadn't even been worn before last Saturday means I am not pleased. So, I shall have to trawl ebay for another pair to replace them.
On the up side - at least I shan't have to clean that pair!

I was trying to explain to someone the other day that I cannot plan anymore. 2010 is the centenary of U.K. Guiding and there will be grand events afoot - and I dearly hope to see it and take part but I just find it very difficult to engage in planning for that far ahead. Actually, I find it very difficult to make plans for next week never mind next year. And it's not that I'm consciously thinking that I'm afraid to make plans or somesuch - my brain literally melts at the thought of planning things. I have no concept any longer - the future is just white mush in my mind.......
And perhaps I being just a little pissy with it - maybe something along the lines of "if you're not going to give me certainty in my life then I'm not making plans and being let down". It's kind of a feeling of avoiding being tricked or caught out. All cancer seems to achieve is making me even more obstinate.....

That whole work thing

I survived.
The first day. Over. Done.
Wasn't as bad as it could have been.
And I got my desk back too - without having to ask. All that trauma for no reason! ::sigh:: Typical!
I skulked in at 10am without being spotted and quite shamefully lurked in the journal stacks until I could get to the stairs without being spotted. As I stood there peering through the journals I thought how much more embarrassing being caught lurking in the stacks would be compared to just having walked in and said 'hello' to people......but I got away with it anyway.
I stood outside the office door for a few minutes and it took a couple of goes before I could bring myself to actually go in. Once there it was bearable - I saw straight away that my desk was clear which took me out of my defensive mode a bit. My two immediate colleagues were pleased to see me and were welcoming without being too fussy or prying or "how are you?".
I spent the day in pottering - unpacking my stuff, trying to sort out my computer which in my absence has gone a bit potty. Initially it was having fits and telling my profile was too large - which turned out to be because it was saving multiple copies of my Outlook archives - who knows why! But the remote IT helpline people fixed that. However they couldn't work out why Workflows - the cataloguing program we use - was refusing to open. So they'll come and look at it in person tomorrow.....
Other than a little chat with my line manager about who the new folk in the office were it really wasn't much of a day. I was on the tired side by the time I went home at 3pm but wasn't completely exhausted - which was good. The real question remains of exactly how much cataloguing I actually remember; plus having to learn the new procedures and MARC 21 rules.....
And tomorrow I imagine I'll get to start investigating all this!
I had today off and I'll have Friday off too - a very gentle start with 2 days this week and probably 3 next week, plus I'm sticking at 10am-3pm for as long as I can wangle it!! :)
The only iffy bit of the day was the giant 'diss' from the girl who had been in my desk and had been moved. We did the whole nod and 'hi' thing and I said something like "[are] you alright?" and she responded with "not really" and I went all "oh, mumble" and then she proceeded to say to me "How are you? You're looking...." [pause, she looks me up and down] and I can't remember her exact word but basically something along the lines of 'not too bad'. At which I imensely insulted - plus quite amused. Mostly because I hate it when people tell me how well I'm looking - and here I was being insulted at being told I wasn't looking well!! Actually, I think most of the insult was from the fact that I'd dressed smartly for work and was actually wearing make-up for the first time in an eon. So - there we are.
Let's hope tomorrow is as mostly pain-free.

Peace

When I was around 16 or 17 I read Remarque's "All Quiet on the Western Front" and I think I can quite definitively say that that book shaped my feelings and opinions on war. I could say it moved me; I could say it horrified me but actually what it did was leave me huddled on the floor, crying and rocking saying "I didn't know; I didn't understand" - for several hours. I don't think I've ever felt so guilty; so sick; so disgusted to be part of the human race - that we could kill each other; that we could kill our young. That we could have so little regard for each other that we would give in to such primitive emotions.
For many years after that I always wore a white poppy for Remembrance Day. And I can say that doing so brought me some unwelcome attention that you perhaps wouldn't expect. I wore that white poppy because I never wanted another young man or woman to die at the hands or intentions of another engaged in war. I did so because I felt so strongly that the loss of all those lives as the result of war was devastating; because I felt so distressed by the thought of all those children and wives and parents who lost sons in distant wars; because I felt so angry that these men had sacrificed themselves for those loved ones. Because in my mind they should have lived. I never wore it because I wanted to show disrespect for those who had died; or because I didn't value their sacrifice. I wore it because I wanted a better, a peaceful future - because I didn't want their sacrifice to be in vain.
But that disrespect; that lack of compassion; that was what other people seemed to see in my white poppy. In actual fact - even when I wore my white poppy I would still give money to the British Legion; and go to Remembrance Day parade services.
I haven't worn a white poppy for quite a few years now. And I've felt guilty every year that I haven't. Today I felt that wearing that red poppy had made me an accomplice to the deaths of all those Servicemen and Servicewomen in Afghanistan and Iraq in recent years. I haven't been setting the right example; I actually haven't been honouring those who have lost their lives for a better future, I've been letting their deaths become the status quo. I don't want men and women to go to war - I want us, the human race, to start learning and communicating and to start being one human race with regard and respect for life not just for lives lost.
And yes, that's a high ideal. But I think that I would rather we strove for high ideals than fulfilled lesser expectations. And whilst we don't strive for peace - we are resigning ourselves to wars.
If you have sons and daughters, wives and husbands, mothers and fathers involved in armed conflict - understand this: I want them to come home to you. I want them to live in a world where they are not asked to sacrifice themselves. I do not lack respect for what they do; I do not lack appreciation for what they do and have done and I certainly do think that we should remember all those who have died in past wars and current wars. And I have done so. But I want a different world for them, for you, for us, for me. One where we are all safe. One where it *is* quiet along the front; because there is no front. And certainly not a world where a young man sees his friends shot and blown up and hit by shrapnel and losing limbs and life.
Peace be with you, wherever you are.
So, today this blog wears what I did not today - the white poppy:

Hi ho, hi ho....

It rained and rained and rained and rained today.
So I didn't go out and celebrated my last day before going back to work by staying in my dressing gown until 2pm.
And finished knitting a sock. Which fits perfectly. Excellent. Very pleasing to have got all the measurements correct. Plus my cast off cuff is an excellent tension and goes over the heel very easily but still stays up around the ankle.
I'm still deciding exactly how I'm going to react to the fact my desk in inhabited by someone else. And what the hell I'm going to say to people. I think "Hello, please don't talk to me" probably isn't really going to set the right tone. But I do mostly want to not talk to people.
::sigh::
The problem of having turned a bit reclusive.
It's the fake jollity I can't stand the thought of. And I know I'll end up doing the "I'm fine!" Lalalala.
I've been trying to train myself to say "Oh just trying to catch up with all the gossip round here!" and if pressed about how I am "Oh, it's all very dull; let's not talk about it - I hear there are changes afoot with the the ED and TLs"
But that still feels very fake jollity.
And I must not say "Back off bitch!"
You know when you see in films and Sci-fi things when someone's been taken over by some Alien consciousness and they're struggling to remain themselves but the Alien keeps cutting in and making them say inappropriate things - I feel a bit like that sometimes. Like there's some really pissed off alien in me that sometimes just wants to cut in with things like "Oh just fuck off!" and "Screw you!". Obviously so far I have kept the alien under control but I worry that one day I won't.
I also know I'm going to feel horribly guilty about not having responded to the emails and calls from a couple of members of staff whom I was friendly with. I have emailed and said I'm coming back and apologised for that and explained that I wasn't really talking with anyone but I'm not sure that it's really mended fences.
::sigh::
I guess I'm really not looking forward to going back. I didn't really think I was. And I knew that I wouldn't really know for certain until I got to crunch time. Well, crunch. Here we are.

Clonk! My head hitting the floor.

Posts for the last 2 days read something like the following:
7/11/08
Argh! Hit Morrisons 15 minutes before they close for ingredients for my guides cooking competition entry. It's midnight! I'm still printing out cooking competition judging forms. I still haven't decanted 2 litres of meths into smaller bottles for use tomorrow. Personal kit? What personal kit? What? *I* need wellies too?! Some more argh!
8/11/08
Plan says leave house at 8.30am - actually leave house at 9.10am - can I hear an 'argh!'?
Rain! Nonono, rain go away! Rain goes away mostly.
Campsite is absolute sea of mud.
Cooking is largely a success.
I eat lots of strange food in the pursuit of the best meal. Including chocolate porridge with marshmallows.....strangely good, strangely sick-inducing.
Noone burns themselves/otherwise sets fire to themselves or things; noone chops their fingers off; noone drinks meths and blinds themselves. I call this a major achievement.
Run out of time for proper pioneering - I throw together a few a-frames for guides and brownies to play with. Fairly successful.
Trees are planted; but not by me. I spent the remaining time trying to match up pieces of trangia and re-pack the 4 crates it took me 3 days to pack in the first place.
Attend official tree-planting ceremony. Admire virulent green cakes.
Pack up more stuff. Return stuff borrowed. Undo knots and lashings on a-frames. It's dusk by this point so I'm untying by touch rather than sight. Good job I know my lashings and knots and haven't tied any grannys by mistake.
Make Dear Other load the car. Incidently The Dear Other was also 'made' to be one of the judges for the cooking competition. He handled it admirably - even the threats made by one guide of holding a grudge forever if her team didn't win. Apparently she was joking.....
Eat virulent green cake in hopes that the pure (green) sugar would keep me going til we got home. It was exceedingly sweet, and did I mention the green?
Get in car through tricky procedure of removing waterproof coat, pulling down waterproof trousers so I could sit in car, remove wellies so I can pull waterproofs off the rest of the way, put on trainers, sit in car, groan, take pill I should have taken mid-afternoon, groan.
By the time we got home I had stiffened up so much I could barely unfold myself out of the car.
Asleep in bed by 8.30pm. Deeply sad.

Today?
Today was Remembrance Sunday, so church parade with guides. Nearly disgraced myself by giggling at the Sweet Camden Lass' enthusiastic reading. It was the intonation on "Adulterers!" that did me in. Aparently it had a lot of exclamation marks. Was excused chaperoning the trip to High School Musical 3 in favour of going home and rewashing the 6 trangias, unpacking my crates, washing blahs and blahs and blahs. Blah blah - it was dull, I cannot face thinking about it again - yawn. I have *not* attacked the 6 pairs of waterproof trousers that need seriously demudifying: treat for tomorrow. Then in a relaxing, total change of pace I get to go back to work on Tuesday. Which is seriously going to eat into my knitting time. Shame.

Brain overload

It's raining again and I'm all of a confuddle as I try to count trangias and knives and wooden spoons and teatowels and a multitude of other things
And write last minute letters to parents saying "wellies! Dear God, send your daughter in wellies!"
I brought home 2 litres of meths today - it's amazing how noone bats an eye as you buy two litres of flammable liquid.....
The Dear Other is coming to this event and one of the organisers asked if he'd be able to help with the digging......I didn't laugh. He's perfectly capable of doing lots of digging; but it's the sort of thing that he'll get bored and frustrated with very quickly.....probably in a manner similar to a brownie. Hee. That'll be fun!
In the meantime, I still need to test 4 trangia burners - I don't want to be caught out. Plus, work out what to do with the group of Guides coming who have only told me this week that they're coming but have decided not to take part in the cooking competition.....erm - here's a field. Sit in it. I think they've defaulted themselves into helping brownies plant trees.....
Plus printing. I have to print and photocopy things and remember things and make sure my second group of Guides know what to cook.....eek.
Argh.
Urgle.
Then I'm watching High School Musical 3 on Sunday. It's called "how to bribe brownies and guides to come to church parade". And I don't feel good about it. (that may be the "start of something new" - ack!)

Brand new day

On waking up and checking the good ol' internets I have actually cried.
With relief.
I may have been born in the U.K., I may never have lived in the U.S.A. for any great length of time but I am American (and I'm British - I'm both). My mum worked hard as my brother and I were growing up to instil in us a sense of identity as Americans. And having that identity has not always been easy. I encountered a lot of scorn growing up; I don't sound American and I don't go around with "I'm a U.S. citizen" tattooed on my forehead so I could not tell you the number of times I've been present when someone has been making generalised slurs about American people. Now, I know there are some pretty odious American people out there in the world - but there are equally some pretty odious British people out there in the world too; because people's actions and attitudes are defined and moulded by more than their nationality. Then, I'm afraid, the whole Afghanistan/Iraq-thing brought more anti-U.S. (or anti-George Bush) feelings to elements of the general British public.
I would like a United States that I does not require me to go around defending part of my nationality. And I hope Barack Obama and the increased Democratic representation in both the House and the Senate will put the U.S. in more of a position that Europeans can understand and will feel they have something in common with.
I know it's pretty unusual for me to get political on this site - and I hope that doesn't send any of you up there in arms (which I defend your right to bear - I wouldn't myself and quite frankly I'm alarmed by the number of children and young people that get hurt or killed by firearms. If you have 'em - *please*, *please* don't give them to your eight year old to play with or leave them where your teenager can get at them if they decide they're having a bad year at school.....but, the Constitution says you can - and I respect that.) I voted this year (and I have voted in every election since I was old enough to vote in 1996 - even from overseas) If you're disappointed that your candidate didn't win - I'm sorry; I can relate - I've felt like that the last two times. It's wretched - and we feel wretched because we care about our country. We think that care should come in different ways - but remember, I have a British ethos at the base of my beliefs. I *really* believe in healthcare that's free at point of use (it's not free, the money for it doesn't come out of thin air) - I've paid for my health care; I've just paid for it a little bit at a time in every paycheque - in my taxes. And yes, "Who's this FICA guy and why's he getting all my money?" (Except we don't have FICA here, obviously) But over the last four years I'm really grateful that I paid my money that little bit at a time and wasn't forking over handfuls of cash at every chemotherapy appointment.

End ramble.
Hey, the guy I voted for won. And, yes, I'm from Massachusetts - so it's not like my vote upset the applecart and turned that whole election around. So I'm happy. But I'm sorry if you're not.

Too late

Ah crap.

Crap crap crap.

How did I miss this?

Well, I know how I did - I'm just really angry that I had left such a big space since I last emailed her. Too slow. Too sporadic. I hate that I'm like that. I wish I'd leapt up and visited her as soon as we'd emailed. In my head I always hoped we'd meet in real life. I think I would have liked Dee a great deal in person; I liked her a great deal in the written word.

I'm sorry Dee; and I'm so sorry for your family and friends. I hope it all played out like you'd planned.

Beastly, beastly disease....

If you can't turn it into literature then there's no point

Ow.
Back.
Hurts.
I'd blame the hopeless chairs I had to sit on for 2 hours except it had started to ache a bit before then.....
::sigh::

Here we have my evening in poetic form:

Creak, creak go the chairs
They are too small anyway
Ridiculous seats.

Some meetings are dull
Plus some people shouldn't speak
Yawning not allowed

The Body Haiku:
I am sick of aches
One part after another
Please just go away

Alternatively:
Ibuprofen, yay!
Plus a hot water bottle
Improves things slightly

My day tomorrow:
Tidy up again
Ring about insurance quote
Finish weekend plan

In which we upload a lot of photos......

Hello! And welcome to today's report on: Do I still have any eyebrows (or a place to live)?

The good news is, yes! To both questions! I have cooked a meal, I have not blown up my house trying to light methylated spirits, I have not burnt myself or anything and I have neither poisoned myself with meths or in general (well, insofar as I can tell so far.)

Here we have the story in full:
Here is my trangia set up - and because I'm a cheatery-mccheater-pants it's set up on my kitchen counter. Well, it's cold and dark outside.....and I didn't want my neighbours to call the police and report some strange figure setting fire to things at the back of my flats. Being arrested by the police wasn't high on my list of aims for the evening. In this picture you have the bonus views of my toaster and the pan I used for porridge this morning, in the sink, You're welcome!


Oooh looky! Here I have filled my fuel vessel with my meths and water mixture and lit it - with a looong match coz I'm a wuss. This vessel took nearly 100ml of meths plus 20ml of water. Diluting your meths at a ratio of 15-20% water to meths will prevent your pans and the burner holes on your fuel vessel getting all sooty. A saving on washing up and non-sooty fuel vessel holes makes for a more efficient burn - yay!
I opened my kitchen window once I had lit my trangia - it smelt a bit funny.
Oh look, here I forgot to take a picture of my water in the pan beneath these onions - well, that would be a dull picture; so, probably just as well.
Here are very finely chopped onions in some olive oil - coz I'm posh like that. I'm also a mean chopper, so I can chop my onions this small.....go me! My onions sat on top of my water the entire time I was waiting for my water to boil.....35 minutes!!!! Which is extreme - especially as the water never actually came to a rolling boil......tsk. After 35 minutes my onions were faintly warm and the oil was *just* beginning to sizzle a tiny bit.
Now, my water has finally come damn-near close to boiling so I got bored and put my pasta (fresh spinach pasta - did I mention the posh?) in and took it off the heat, and put it to one side with a lid on it. I figured that the heat in the water would be enough to soften and heat the pasta through and I was worried that if I didn't do something I'd be having pasta with raw onion for dinner. As soon as I removed the water pot and put the frying pan directly over the heat my onions started sizzling - see them sizzle? They're all in the middle because that's where the hot bit is.....
Well now, my onions are cooking so well that I've added the (fairly finely) chopped mushrooms and they're well on their way to getting nice and soft. In fact, any minute now I'm going to get carried away and add my salt and pepper and oregano. Always add your herbs before your liquids - then you get the nice smell of the herbs in your kitchen. Couldn't tell you if it makes it *taste* any better, but it doesn't make it taste any worse.......


Here we have further evidence of my mccheatery posh ways - instead of bog standard chopped tomatoes (which I do use frequently!) I've added some fancy Bertolli Pecorino cheese and garlic sauce - verrry fancy dinners here folks! It's bubbling away quite quickly now, so once it's heated through I'll put the pot of water and pasta back on the burner and put the frying pan back on top of that to keep it warm....you don't need a picture of that, do you?

This here, this is what you do while you wait for 35 minutes for your water to boil......you drink diet coke with lime (never buying *that* again - ick.) Sit next to an open box of chocolate chip cookies (huh, how did that come to be open.....?) And read your book - Elizabeth Moon in my case. And keep peeking to see if it's boiling yet. Which of course slows down the process because you've let the heat out from under the lid. Damn my impatience!


Gosh, but I'm bored of waiting now.....my pasta is looking pretty wibbly and steamy, even if it isn't boiling. A sample is taken and approved - in fact, it's a little mushy. Tut. So, off the heat it comes and the sauce is whipped back on to make sure it's nice and warm while the pasta is drained. Pasta is manouvered to plate and sauce applied - the end result is as follows:



Ta dah!
The finished product - I still have not died from eating it and it did not taste of meths. It tasted of pecorino cheese and garlic, and spinach pasta.
I cannot currently say I'm as good as a bronze DofE group since I didn't actually cook it outside - but I'm now one step ahead of the girls I'll be supervising at Saturday's cooking competition! Bonus!
And, no, noone ever called me a tidy cook - hence the stuff all over the counter-top.

The amount of meths lasted for an hour and 10 minutes. This is a *lot* longer than I was anticipating - however I *was* indoors in a fairly warm room. Quite frankly, I *dread* to think how long I would have waited for the water to heat up if I'd been outdoors.....

So, tune in tomorrow to see if I can be bothered to cook something else on the trangia - maybe I'll even take it outside! Maybe my neighbours will have a fit! Maybe I'll have to fight off London drunks desperate for my meths (unlikely) (I hope) You know you can't wait!

Na Blo Po Mo. Again. Again.

It's that NaBloPoMo time of year again - my heart isn't in it this year so don't be surprised if I vanish midway through.....
Eloquence feels like it's ebbing away. Along with my brain.
Apparently I managed to go to Northampton without my Arimidex last weekend - but didn't notice that I hadn't been taking them for three days....in fact, I thought I *had* taken them at least once and then misplaced the pills but when I got back to London they were here; so I obviously hadn't. On the plus side I had a few days of hardly any hot flushes; on the minus side my axilla and shoulder started to ache again which I think is due to some swelling because of a few nodes in there. I'm sure it'll settle down again now I've started taking them again. I just hope the aching back settles down too - it's been nearly two weeks and it's not as bad as it was but it's not 100% either. Gee, I love being a crock! It's such great fun! (NOT)
Tomorrow, tune in to see if I've blown my up with methylated spirits and a trangia.....

It's all *mine*!

Wah! Argh! Gnash!
They've given my desk to someone else.
At work.
When I last went in they had a temp at my desk; now it obviously has the stuff of one of the other permanent members of staff.
I cried and I still feel pretty damn sick about it. And I'm pissed off for caring about it so much; but I do.
I snuck in today while there would be noone around - and there wasn't fortunately.
Sniff.
I wanted *my* desk back.
Selfish perhaps - you can't really be away for over a year and expect them to preserve your place in exact stasis.
*why* do I have to *care*?
Hate. This.

Auf Deutsch - Updated

I'm not proposing to read for 24 hours but I am going to take up Sarah's mini-challenge. To read for an hour in a language foreign to me. So, I am going to see how much, if any, of the German I learnt is still in the memory banks!!!
Good old Projekt Gutenberg has provided me with a Sherlock Holmes translation: Das Diadem aus Beryll

So, I'll report back in an hour and let you know how I got on!

Update:
Well, I stared at German words for an hour.....let's say that I was able to get the gist of it but by no means an accurate picture of the story. I also didn't get very far :) I managed the direct speech better than the descriptive sections and apparently I remember very few verbs.... However I do still have a reasonable feel for sentence structure. So I have a feel for the, er, feel of the sentence; I simply don't understand every word! :) I helped myself along a bit by reading a paragraph or a few sentences if it was a long paragraph at a time and working out what I thought it meant and then comparing it with the English version on Project Gutenberg. Clever plan, eh? At least it meant I could check how I was doing and figure out any specific words that didn't make any sense to me. So, there we are - challenge met. At least I did my best. I obviously need to work a bit harder if I want to keep some semblance of German in my brain.

Deed done

Hair is straight. Hair is flat. Hair was attacked by straightening, things - whadjacallems.

It's still below my shoulders - so not *that* much was cut off it.
It has layers - I didn't think I'd have layers, coz, you know - fluffy hair and layers means *pouff*.

But actually, I think there will still be some curls when it *hasn't* been attacked by straightening things - and I won't be doing that because I'm lazy. I mean, I won't be doing that because that would cause the lymphoedema in my arm to flare up, I'm sure.....

I cried while it was cut; I cried after it was cut but mostly underneath the mane of hair whilst it was being cut; so it mostly didn't show.

I kept a few curls - you know - because. I needed to. I'm not sure why.

I cried because I looked a bit like I *used* to look - all that time ago. Apparently the curl will probably continue to grow out and it will go back to how it used to be. I'm sad about that.
But, as the hair came off I kept telling myself it was just change. Just more change. In a life that is full of change. With a person who hates and panics about change.
::sigh::
It's all about how we see ourselves in our mind's eye. And my mind's eye is confused. It sees the person I *was* - maybe it's a patchwork of many of the persons I have been.....and am. All I know is that I am surprised when I see myself in a mirror. That she is not who I am expecting.

Anyway, tis done. And I'm told it looks pretty good (but not so much in my webcam picture):
EDIT EDIT EDIT EDIT
You're in luck: Sweet Camden Lass has a *much* better picture from yesterday. De voila!

To chop or not to chop....

::sigh::
I'm getting my hair cut tomorrow. The last time I had it cut was in February 2005, a week before my first AC chemo treatment. It's been growing since the end of 2008. It looks like this now:
And people keep saying how pretty it is, I shouldn't have it cut, etc, etc. Bit the truth is that I generally have it up 24 hours a day. I get too hot to have all that hair down my back - especially whilst I'm trying to sleep.
But I do think it's pretty - actually, despite all the time it took to get used to it; despite how hard I tried to *not* like it - I love my ringlets.
And I don't know what it will do if it's cut - will there still be ringlets? Or will they be gone? Maybe just wavy, or even straight again? I will be gutted if it doesn't curl like this again.
::sigh::
I 'joked' when all my hair fell out that I would shave my head every year to commemorate the whole ordeal but there was an essence of honesty there. I didn't want to get *attached* to have hair again. And, of course, it may go again if, oh, ok, when we get to the hardhitting chemos again. I don't want to die with no hair. I want you all to remember me as some Pre-Raphaelite, intriguing beauty..... with bounteous ringlets. OK? Is it a deal?
::sigh::
So, I don't know what I'm going to have done to it tomorrow. I keep warning people that I may just have a centimetre trimmed off it - I can't cope with expectations. But I just fear that I'm going to weep and weep as he cuts it. Not about having this hair cut off. Just, for everything. For the fact that I didn't cry last time. For the fact that it will go again one day. For everything. And I'm going to look like an insane-woman.... the dear Sweet Camden Lass will be there too - for moral support and mopping up duties in between having *her* hair cut and 'done'..... could be interesting for all.....
::sigh::
Please could I *not* be a wet, teary blanket in front of any more people I don't know.....I'd appreciate that.
Freebie photo:
My hair on a less attractive day on holiday in Scotland. Please allow your attention to be drawn to the owl, whose name I have forgotten. Sorry Mr. Wol....

Preparing for chemo advice

To Cathy:

Thanks for your email - I hope you get this is time to be of some help. You didn't leave me an email address so I'll do my best here on the blog for you.....

First chemo:
"What can I do for him/her that day? What should I be prepared for?"

This is a good question - this is a *great* question. It's also a tricky question.
We're all different, we all react differently, different chemo suites have different procedures and atmospheres and different chemo drugs affect our bodies in different ways.
Wow. That was *really* unhelpful, wasn't it?
Let me try and be a bit more helpful within the proviso that I can only speak from my own experience.
My first chemo was terrible - I'll make no bones about it - sorry. It was terrible because everything was so unfamiliar. The space, the people, the procedures. I also had my own mental baggage - namely that I was hugely uncomfortable and sickened by the idea of having needles stuck in me and having these foreign substances put in me. I found that really quite frightening.
What was helpful for me?
- Having my family with me - I had my mum, dad and partner with me that day. We couldn't all fit in the chemosuite at once so they took it in turns to be with me.
- Solidarity - I don't like people telling me everything is going to be ok. What I do like is people saying things like "Come on, we're going to get through this" A sense of togetherness (although sometimes I do think "who's the 'we' in this?!")
- Be the best companion you can be. I've always found my dad really great at this - he'll make sure we've got the sudoku and crossword puzzle pages from the paper and he'll be daft and distracting when they're putting in my canula. You don't have to do these specific things - be the things you can be - talk about something you know the other person will have an opinion on or is interested in.

What to be prepared for?
- Sometimes fear manifests itself in funny ways, especially when we're in situations where we don't want to show we're scared. So getting angry or really quiet or fussing about something inconsequential or anything that seems out of character could be that.
- Waiting, sitting around. Chemo takes time.
They should begin by talking to the patient and carer/family about what the drugs are, how they'll be administered, what monitoring they'll be doing and what side effects might result - and how to manage those if they occur. Hopefully you should have one nurse looking after you that day - make sure you know their name. No-one does *anything* to me until I know their name - it's only polite!
Then, assuming we're talking about IV chemo, they'll want to put in the canula - the key that's always made me feel better when it comes to canulation is to remember: they can't do it until *you* roll up your sleeve. And you're in control of that! Don't watch them do it - there's no need - you don't get bonus points. I always like to jokingly ask them if they're really good at canulation. That makes it clear that I expect someone who knows what they're doing. You'll probably get to a point after a few visits of knowing who you want to canulate you. Who you feel comfortable with and who knows what they're doing. It's your treatment - don't feel you can't ask for the person you want.
Once they get the canula in they may hook you up to some saline solution and/or some antisickness medications - in my experience it can take around 20mins for that to go through. Blah blah - may be different for you, etc.
Chemo can be administered in a few different ways - I've had chemo drugs injected into the saline line going into the canula (this was an alarmingly *red* coloured drug to boot) - this is quite quick - 10mins or so, I've also had it dripping into the saline line going to the canula - this is sloooowwww - an hour or more.
Once the chemo has gone through they may well administer some more antisickness medications and then give you some antisickness tablets to take home with you. Make them write down clearly what and when to take the various ones plus clarify if you can combine them. I often thought I would remember what they told me but then didn't.
Then, they should let you go home - but also make sure they tell you whom to contact if you're unwell or worried or have questions or are running a fever.
- Feeling out of control. People doing things to you that you don't really understand can make you feel really out of control. I've posted before about being in control of as many aspects as possible.
- Being tired. Both of you. Sitting there, with that much tension for that amount of time is *tiring*. You might want to prepare something for dinner that evening in advance - or if you have some helpful friends or neighbours who keep asking what they can do then ask them if they'd mind preparing something ahead of time. I'd advise something light and easily digestable. I never felt like eating when I got back but I would try and eat something if it was put in front of me. Plus, I'm sorry to say - something that's not too terrible to throw up again if it's a chemo drug with sickness as a side effect.
- Feeling, odd, strange. I got through the day ok, but once I got home I just felt - invaded, scared, lost, all this and more.

I hope this is a little helpful to you - good luck to you both.

Tiddely pom, the more it grows.....

Ba-blah blah blah.
Hello.
It's 'bye bye' to Xeloda from me and 'hello' to Arimidex as bad, naughty Xeloda has declared itself finished and allowed a wee bit of growth to the nodes in the lungs and lymph. Tut tut tut. But! Bone scan showed *mostly* stable/no big change. However an MRI has been ordered to check if the pain my shoulder is due to the cancer in my spine around my neck and/or the cancer in the bone at my sternum. I didn't really realise that there was cancer in those specific places before today; never wanted to know - but I guess one has to know eventually. If it proves to be this, then there may be some radiotherapy to help it.

So, yeah, not a good day. Could be worse - the growths are small and slow; no rampaging for the moment. And I can't say I'm sad to see the back of the Xeloda - 12 pills a day carefully arranged after eating at the right time and causing the diarrhoea and sore hands/feet - I'm happy to see the back of that. And the Arimidex is fairly side-effect free: hot-flushes (got them already) and aches in hands.... but it's all still a blow. I needed the Xeloda to work for longer than this. I was hoping for more than a year on it. I don't understand how the Arimidex is really going to help - all it does is to inhibit any other oestrogen production in the body - so, yes, it's going to prevent the oestrogen feeding the cancer cells; but, surely if staying in control of the cancer was as straightforward as this, wouldn't this drug have been the one we tried first? It's not exactly sounding like we're using the big guns here. But the only other options is moving onto the old-school chemos (IV) The Arimidex at least means that I only have to go into see the consultant every 6 weeks, instead of every 3 weeks - that's nice. And swallowing a tablet a day is infinitely better than being hooked up to IVs again - although we'll be there in the end.
So, teary day. The thought I can't stand is of having to go through this *every time* a particular line of treatment comes to an end - that's what I can't stand. The shock, the upset - although today was *not* helped by a very large clinic list and having to wait over an hour and a half beyond my appointment time to see the consultant. There weren't enough seats in the waiting room. I was a complete mess before I even got in there. Needless to say - I wasn't totally surprised by the results - I was worried; but no matter what, hearing it is never easy.

I really hate cancer and I really hate having cancer and today I really wished for oblivion. Just for a short time - to not have to feel or think for a while; because I hurt. I am bored of cancer; I'm bored of having it, I'm bored of fighting it - it's tedious and monotonous and *dull*, *dull*, *dull*. I don't want to fight it anymore - I'm tired of it. Just think what I could use that energy for if it wasn't being sucked up by getting up and facing the cancer every day....

::sigh::

Anyway, that's where I am today.

Listing

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.....

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...

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.....

Melting

This holiday is temporarily interrupted by the desert from heaven.

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......

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.

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.

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.

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

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]::

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! ;)

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!

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?!)

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.