Friday, May 30, 2008

What do we want?!

For the record, I'm sure I said "I love you all but I *have* to go finish scrubbing my carpet!" not 'want' - there was definitely no wanting being experienced whatsoever - apart from wanting to *go home*...... at any rate, that was what I intended to say -- sometimes the words coming out of my mouth are, um, not quite what I wanted to say! :)
Have now slept muchly and, mostly, unpacked - I haven't quite decided what to do with my four cardboard dragons.....tricky that.
However, now I must go and pack for the wedding I'm going to tomorrow -which I'm sure will be lovely and tortuous at the same time. Tortuous because I'm sure I'm going to end up all weep, weep, cancer, why don't I get to do these nice, normal things like my friends, bit more weeping for good measure. SO, excellent, have got all that planned out nicely.
I'm also quietly rejoicing in the fact that three of my Guides went to the County Guide holiday in the Peak District whilst I was on Pack Holiday and have come back with good reports of behaviour etc. Compared to last year this is a *major* improvement and I am *Very* *Pleased*. It must be me - I wasn't there this year, so they behave - I was there last year and they were menaces about whom every adult complained, including me.
So, yes, clothing, for wearing and some makeup, and I have no hairpins and no tights despite thinking I did. Brilliant. lalalalalalalalala la

Wednesday, May 28, 2008

Blown over

*Good* *Lord*
I have survived - 4 days of brownie pack holiday, that is....
There has been endless whining, falling in and out of friends, rain, brownies who cannot sit at the dinner table for more than 5 minutes, sayings of 'Be Quiet!'.
I have also *scrubbed* a carpet, whilst seething and ignoring the fact I shouldn't be doing things like that with my right hand and arm (of which the hand is somewhat puffy today ::sigh::)
An extremely picky warden at the pack holiday house wanted every minuscule wisp of blue fabric off the floor and also apparently expected us to feed brownies only food that won't show up on the carpet tiles when it's dropped; which, inevitably it will be. So I did the job - trying to mostly to scrub with my left hand and thinking of all the retorts I'd like to make to her. Sweat dripping off me - hoorah! Very nice effect - whilst thinking I probably shouldn't have been doing it but on the other hand thinking "I'm not dead yet" and being extremely stubborn. Which is my natural state anyway. My hand will go down - I'll put my sleeve and gauntlet-thing on for a few days and knit as much as I can - I think the knitting motions help to move the lymph fluid out. And hey! I spent the weekend doing tons of things that they say I'm not supposed to do - washing up in (very) hot water, dragging tables and chairs around, hefting shopping around. Life goes on - but life's too damn short for fussing - I want a sign that says "I Aten't Dead" - I think that's funny - I have a strange sense of humour. A fact that will probably be borne out by those who put up with me for the last 5 days. That, and the fact that I'm not a whole heap of fun when I've just woken up...... ;)
Oh, and apparently I'm officially Better Company Than Cleaning Toilets. Just so those of you who haven't met me in person get a real sense of what I'm like. I hope this is filling you with enthusiasm for meeting me ;) [BTW - I will be laughing at this for evermore!]
There were other funny things - but I am too tired to remember them; which is a drag - I mean, if I can't remember something for more than 24 hours, what the hell am I? A goldfish?!
I can, however, remember GFI Snogging -but am totally unable to explain that to anyone who wasn't there at the time.....
I had some lovely times - I've laughed myself silly most evenings and am so grateful for that - it's been lovely to get to know a few people a little bit better. I'm a slow friend-maker but I think the friendships are better that way.
And friendships are what Guiding is all about (well, apart from all the other things Guiding is about anyway)
::raising glass [of water]::

Wednesday, May 14, 2008

Doom downgraded

Cancel doom - not required today.
All is the same; no progression - Stable still.
It's amazing how tiring it is to sit around waiting and take this stuff in.
So, you may stand down from panic stations - for now. :)
And sadly, I have to start taking tablets again on Saturday ::sigh::
The extra week off has stymied all my holiday planning as well.
We're having a week in Cornwall in September once the schools have gone back. And two weeks in Scotland in August. Lucky, lucky me! Plus *two* weekends in York for weddings. All very pleasing. I'm looking forward to tea at Taylors - I haven't been for *years*. I can still vividly remember day trips with the family to York - particularly with my US grammy; she *loved* York. On one trip I bought my copy of "The Chalet School at War" and read it all the way home on the train......maybe I'll take it along for old time's sake! ;)

Tuesday, May 13, 2008

I hate CT scans

Well, I don't seem to be able to shake the sense of doom about my CT results. After all this worry; I hope the results *are* back......I think. There's no room in my head for a 'good' result; I'm assuming the worst - just as a safety precaution really, I have nothing to base than on. Other than the fact my body can't handle as much of the Xeloda as it once could. Now perhaps that means I should expect the results to be good - as the Xeloda has obviously been having a strong effect - but is it just the side effects? I don't know; I can't know; I should just wait until tomorrow. But I can't.

Add in to this that the Dear Other's cousin died last week - she had breast cancer but they did not spot her mets fast enough. She deteriorated quite quickly apparently. The Dear Other and I are upset - she was a lovely lady and her son was due to get married in just a month's time. So unfair. We reassured each other that I was not her; and neither of us were going anywhere..... I hope what I said was true. I then had a 'woe is me', 'what is the point?', 'how does religion fit in with this?' with the Dear Other's Vicar - he was very tolerant. Not overly helpful - but what help can there actually be? ::sigh:: At least he didn't run away screaming I suppose!

Then we went to Coton Manor Gardens and saw flamingoes and their lovely bluebell wood
This is their picture - not mine; I'd forgotten my camera entirely....doh!
Very beautiful; very romantic, 'isn't this romantic?' I said to the Dear Other; 'Oh, yes', he said.
But not romantic enough to encourage any proposals apparently.
The bluebells will be gone soon.

Tomorrow - clinic - CT results (probably) - knowing more about what's happening whether I want to or not. Tomorrow - funeral for the Dear Other's cousin. I can't go as I'm at the hospital. Dear Other can't come to the hospital with me and reassure himself. Fortunately for me, my papa will be there with me - thank heavens for papa's! And he's very good at calm and collected - which I need sitting in that corridor.
So, panic stations, all! That's an order!

Friday, May 09, 2008

The solution

Well now, thank you all for your comments on the dilemma of the previous post - it was *very* interesting to read what you had to say and I have to say, for the most part, your comments seem to echo the way I feel about identity and blogging - and that is that identifying yourself and giving others access to your details and your blog was something to be approached with caution. For safety reasons, for sensitivity reasons. Which is exactly how I feel about it. And, quite honestly, when someone like snoskred, whose opinion and experience I have great respect for, says that she would *never* share details like that - I think there's no question left in my mind.
I'm following my instinct here, which, as Dorothy from Grammology quite rightly said, is often the sure-fire test.
So, no article for me. I was disappointed initially, but perhaps it's for the best. I like my readers and who knows what would happen if even more people came this way.....? But I suppose part of me has ambition - sees other folk doing articles or writing for other blogs and websites and thinks 'why shouldn't I?'. That's life, I guess!
In other news, I went to to Boston last week to see Eddie Izzard's new tour - 'Stripped' along with my brother. Fahbulous! Very funny. I thought he was better than when I went to see 'Sexie' live - I was slightly disappointed then. But this, was brilliant. So I was super glad I'd gone and that the feeling unwell that I did for the rest of the week held off until *after* I'd been. Alternatively, seeing Eddie Izzard gave me a stomach upset....... nah. It was the capecitabine. I really did think I'd picked up a bug on the plane because the capecitabine symptoms had been so minor and now I was feeling nauseous as well as having an upset lower digestive tract. But I saw The Precious Oncologist on Wednesday (why, yes, the day after I got off the red-eye from Boston!) she immediately said it was the capecitabine and that I needed an extra week off and it was time to reduce the dosage. I was gutted. I am gutted. It's my aim to keep going as long as possible on each dosage level - because each lowering is a step closer to not having any more options. And I'd hoped to keep going on capecitabine for *years*. (I have *nothing* to base anything about length of time etc on, it's just my arbitrary aim.) So, I've had 11 cycles on 2300mg twice daily. She went on to say that I had gone on at this dosage for longer that any patient she'd ever had and that most people managed 2 or 3 cycles at this dosage before reducing. So, actually, I've done bloody brilliantly. But I still wish I could have kept on a little longer..... but she went on to say that if we carried on at this dose - I'd probably get a few days into the cycle, become really unwell and then we'd have to have longer than an extra week off and that the important thing is to keep the cycles going on the 2 weeks on, 1 off rhythm. I don't really understand this - how can than be more important than the dosage level? It's illogical to me so I conclude I don't have enough information and that I'll be asking some questions when I see her next week.
I also had a CT scan on Wednesday - so hopefully I'll get the results next week too. I hope they'll continue to be good and show that the capecitabine is still working. Otherwise there'll be a whole slew of points between here and No Options Left crossed off the list (this is a pretend list - there isn't actually a list). On a more general note - having a cannula put in after a transatlantic flight plus diarrhoea is quite a challenge - the dehydration makes the veins *vanish*. Hence, I have a lovely bruise where apparently we hit a valve. Did you know you had valves in your veins? I didn't. I do now. Plus we had to downgrade to a yellow cannula as the blue just wasn't having any of it. And my favourite chemo nurse is a) on holiday in Mauritius - lucky devil and is b) going back to Australia in August or September - for good..... wahhhhhhh! (Why is it that everyone I know is moving to Australia??? OK, slight exaggeration perhaps but this is about the 4th person I know to have gone/be going to Oz. What did I do?!)