Tuesday, December 25, 2007

Happy Holidays

Happy Christmas y'all! - well, those of you who celebrate it.
Happy ordinary December 25th to the rest of you!
I've celebrated this morning with an unhappy digestive system - no turkey for me today, I think...... :( I just hope I can manage to stuff myself with stuffing - which, let's face it, is the only reason for having turkey to begin with! I love me some stuffing...... ::sigh::
Today, Xeloda, I give you the v's - and I'm not even wrapping them up. So there.
So, I haven't taken part in the cousin's visit this morning - which makes me feel even worse. Not because I was desperate to see them (does that sound unkind? Yes, it does a bit - but that's not what I mean) - what I mean, is that it means I have to play the 'cancer-girl' role. I wanted to go and look normal and be normal and not have everyone thinking 'oh, poor her, etc.'
Whoo -hoo. I'm suffering with ruddy Internet Explorer instead of Firefox today - so I do apologise if my spelling is a load of rubbish. I discover I've become dependent on the in-browser spell-check with Firefox and consequently don't notice my own typo's anymore.
Sweet Camden Lass asked for a picture of the Christmas Tree Caper villain (pseudonym: Maxwell), so here he is, trying to look all innocent:

And here he is looking pissed off because he was sleeping *under the covers* and I lifted them up to take a photo (mean, old me!)

Pissy, evil-eye; yes?

Finally, we have a White Christmas (and yes, I've just grokked-out watching it this morning. It is my favorite film ever, along with anything with Fred Astaire in. *I* want to be able to dance like that and wear fancy frocks like that. ::sigh:: Not Going To Happen.)
It had snowed before I arrived and this was the view from my bedroom window the morning after I arrived:


Then, we were supposed to have a couple more inches last week, but what we got was more like eight inches more - this is the house over the street in the snow:

And, then this is our back garden (well, the wilderness - my grampy liked trees - me too. I miss him lots):
*So* beautiful. The more so because I get get scared that this is the last time I'll see this; have a Christmas here; have any Christmas.
But, it may not be either - maybe I'll see many more. I hope so.
Enough - today I'll just enjoy the day - or do my best, anyway.
(Dear Other arrived last night with miminum delays - so that makes me happy :))
Happy Christmas eveyone.

Friday, December 21, 2007

Naughty or nice

Remember what I mentioned about the cat and the tree??
Well, tree met floor with resounding crash yesterday evening as the cat tried dabbling in the water at the bottom (at least that's the theory). So, some smashed ornaments, water all over the floor, sodden rug and us trying to screw the tree into the floor at 8pm.
And now he's just knocked the watering can over - more water all over the floor.
Someone's not getting a visit from Santa Claus this year........

Thursday, December 20, 2007

Snow! ::grin::

Whee! Short interlude for sitting on a plane with lots of turbulence and dodgy intestinal tract - yay! Recipe for a fun trip! But I did make it to the other side of the pond and I've only got 3 more doses of Xeloda before Christmas - hopefully it'll all calm down by then. I have my onc's permission to knock off one of the small tablets on each dose if my skin gets too bad but it hasn't really - my cuticles are all disappearing and I like to be in close-ish proximity of a toilet but that's it for now. So I'll stick with the full dosage - I don't want to start decreasing the dosage until I really have to - that will just mean that I've got less of a place to go to before my body can't take any more of it. So, I'm shutting up and swallowing the damn pills. And lots of liquid to try and avoid being *too* dehydrated.....I thought last week I was getting a cold but it so far hasn't transpired (which is good) But I checked with Megan at the hospital about what to do if I got a cough (instructions in my purple chemo booklet say I'm supposed to ring them if I get a cough and I thought calling transatlantic over the Christmas period probably wasn't going to be much of a goer; so I now have *two* different sets of emergency antibiotics (on top of all the rest of the rattling lot) - I'm getting to be the drug queen........

It's snowing here in Massachusetts - we've had about 6 inches of the light, fluffy variety on top of the 8+ inches from the previous week, and I'm loving it. It's beautiful. Light and white and fresh. I stuck my head out the door earlier to take some photos and it was so quiet. I'd forgotten how quiet the snow makes everything. Even when there's nothing to hear; the silence is muffled too. Isn't that strange?
I'll post the photos later on I hope.

My memory is getting quite iffy again - hence the leaving my glasses at the Haven after Shiatsu last week. They were right on the table in front of me and I still didn't notice and left them there and had to go back to collect them another day - which is a drag because it takes at least an hour and 3 changes of transport to get there......grrrrr.

Amazon seems to have sent everything I ordered from them in an individual box - sorry, make that an individual, ridiculously enormous, over-packaged box. I'm sorry earth - I think my Christmas presents have cut down the last trees in existence. In the past they've been *much* better about it so I'm quite cross really. We went and picked out our tree yesterday and it's lovely - lots of smell and just the right shape and size - so now we have to fish out all the decorations. When we were putting it into its stand last night the cat insisted on sticking his head in it for ages - and then had a sneezing fit. Quite amusing. Hopefully this will have cured him of wanting to climb or otherwise decimate it......(but probably not).

Heartburn can See Me In Hell - getting permanently annoying now.

Right -decoration hunt begins now! Challenge!

Thursday, December 13, 2007

Long time, passing

Where did I go? I guess December has gotten the better of me.
What have I been up to?

Well, I had my appointment at the Royal London Homoeopathic Hospital with Dr. Kassab - who was very nice. Her office was filled with plants which was nice - green and leafy. She was very kind and it was so fantastic to talk to someone who really acknowledged how much of a problem the hot flushes are - and then went on to say that she was pretty sure she could do something to help. Which is such a difference to the usual 'well, it's crap but we can't do much about it'. I'm not saying that other drs. etc have been unkind or unsympathetic; it's just that, generally, they can't offer much help with it. Plus, it's always considered as a *side-effect* rather than a problem in its own right.
So, I cried (as usual) and explained everything that had happened to me (which I hate doing - well, the explaining the whole when it first started, how I found it and all that stuff.)
It was really quite fascinating discussing it with her - she asked lots of questions about the emotional effect and how I felt when it happened and before it happened and what it felt like. I learnt some interesting things about them through this - for example, the hot flushes make me feel claustrophobic - having to have windows open at night; feeling compulsions to take off as many clothes as I can when they happen; panicking and feeling trapped when they happen.
So I came away with an initial prescription for 'Argent Nit. ' and another for 'Glonoine' if the other isn't doing much after a month. So it's been just over a week and I'm still waiting to see what sort of effect the Arg. Nit. is having......I'm not feeling like it's helping much yet but I'll keep on giving it a go.

One of my few working veins has given up the ghost so we had to have several goes at getting the cannula in on Friday ::shudder:: I never thought I'd say this, but; I miss my portocath.....I keep joking that I'll bring in my port and they can put it back in. But I was down to 2 or 3 functioning and easily found veins in my one usable arm and if we keep going with the IV pamidronate then I'm going to run out of veins!! Plus, who knows what they'll have to give me in the future. Eventually, if the Xeloda stops working, then I may need some other drugs. So, in the long run, it may be an investment to have the portocath put back in.....I guess I'll cross that bridge in due course.

So, then on Saturday morning (of course, these things never happen on Mondays...) I noticed that a mole on my leg was looking odd and scabby and darker. So, of course, I freaked out; convinced that it was skin cancer and it had spread and perhaps this was the initial cause of it all (irrational, much?) and so on. Oh, and that the 3 cysts I have in various places weren't cysts and I should have mentioned the new one instead of telling myself it was just another cyst etc. Argh, dying, end of world, man the lifeboats, plan the funeral, finish the knitting etc.
Poor Dear Other tried to reassure me - reminding me that the CT scan would have shown up other cancer spots, that even if it was abnormal it didn't mean it was cancerous, that it was small. And it was a case of me meeting logic and going 'lalalalalal cannot understand this logic-thing, s'cuse me, too much dying to do!' Poor, poor, Dear Other - he looked so sad and said he felt so bad about not to be able to make me feel better. (Bear in mind I'd thrown in a healthy dose of 'I'm so stupid; it's all my fault; I should have done this and that and the other; bad, bad me, blah, blah, blah') Well, he did make me feel better; but I felt pretty crap to begin with so it was better on a relative scale. So, after a weekend of 'argh!' and great fear, on Monday morning I rang my breast care nurse (well, the new one - the one who knows me best is on maternity leave - the nerve of it!) who helpfully said 'hmm, don't think it's to do with the Xeloda - go and see your GP. Bye!' Not quite as much cossetting and reassuring as I'd hoped for. So, I rang my GP's surgery and asked for an appointment that day - none to be had (of course) so I asked for my GP to ring me and headed off to Shiatsu where I spent at least half the session crying and wailing before we even started - but she was very nice and understanding about my neuroticness and was even kind enough to say that she understood my point of view about feeling that the cancer was my 'fault' because my body is me. By the time I got home it was getting on for 5pm and my GP *still had not rung me* and I was cross but decided I'd just ring for an appointment early the following morning but just as I was bad-mouthing him, he rang (at 4 minutes before 6pm....) and said 'it's about a mole?' and I said 'yes, it sounds pathetic, I know.' and he was kind enough to say 'no, no - do you want me to look at it?' (er, no - why would I want that? Please just use your psychic powers to divine it's status and we shan't have to bother with all this appointments business.....) Ooh, I am bitchy - horribly so, considering that he told me to come and see him the following day - a miracle because I can't usually get an appointment with him at all. But he squeezed his schedule or something and fitted me in.
So I showed it to him, along with a bunch of other ones and my cysts, saying 'what about this one? Ok, this one? Can I just show you this?' and he was exceedingly patient and looked at them all and told me they were all *FINE*. (YAY!) But he said that if I came back in a month then he'd look again and if I wanted to have it removed then he'd take it out and send it to be tested; so I probably will have it taken off - just so I stop peering at it and poking it (which was probably why it was red in the first place - dumbo.) Then he asked if there was anything else he could do for me - which I always think if very nice but very pointless; because what can he do? I was torn between saying 'yes, make it all go away' and 'yes, come round for tea - that will make me feel better!' But I didn't say either - well, I might have said the former in a not so facetious way. But I did whine a bit about not sleeping and he gave me a prescription for some Zopiclone (why do half my pills start with a Z or an X???) - just a small number, not a long term thing but he said it might help so I can make the most of my time with my family over Christmas. So, I went home a very relieved bunny and collapsed in a heap.

Remind me to tell you tomorrow that I left my glasses at Shiatsu, I'm getting a cold, I'm collecting preventative antibiotics and to show you the *bee-you-ti-ful* lace stole I was given as a Christmas present (which I've worn and stroked every day since I got it); plus my dithering over what to make with Pocketina's hand spun yarn (I'm currently too scared to knit it in case it all goes horribly wrong and I spoil it - which will make me cry, more, lots.) Plus, plus, my envy over the meeting and fah-bulous new creations of Laurie and Rebel.

The end.

Whee! Are you still reading? Or have you slumped over in a heap of overwhelmed-ness?

Monday, December 03, 2007

It's all Wicked!

Wow - the whole lack of NaBloPoMo meant that I could have my party yesterday and not have to blog about it on the same day whilst collapsing in a heap of tiredness......
It's great!!
It did go with a bang rather than a whimper, which is always gratifying. The mulled wine went down very nicely - no-one ate enough cake or mincepies: how can this be? I am at a loss to understand this issue.
We did have a few youngsters around which was lovely - at one point there were two little girls grovelling under my table - hunting a tiger, I was led to believe. I also got to listen to a very good rendition of 'Away in a manger' - with nearly all the right words. Apparently there is 'no crib for a star' in this version - and I was quite tickled at the idea of sleeping in a star..... :)

I finally tracked down mini candy-canes to go in my mini Christmas stockings; so I'm well pleased with that!

Tonight, I am going to the theatre too see 'Wicked'! Yay! I've been wanting to see this for ages - the only flaw in the plan are the 10 Guides who are going too......apparently there have been ructions and I'm just hoping we can all have a Nice Time this evening. I've got lots of back-up though (for which I'm super-nova-ly grateful!) - so hopefully all will Be Well.

Tomorrow - is homeopathic hospital day. I have High Hopes. I hope they won't be dashed.....

Saturday, December 01, 2007

Blah, blah, looking a lot like Christmas etc.

Well, it's bakety, bakety bake here today....tomorrow is our Christmas Drink part-ay. Why, yes, that is quite early but I'm having fancy afternoon tea at Browns next Saturday. Which is jolly exciting if you spent lots of your early years reading Agatha Christie (like me) - Browns is where, and what she based 'At Bertrams Hotel' on. And the weekend after - I am,...doing nothing actually. But when we planned this I thought I might have gone to the States by then. So, this weekend it was. 35ish people will descend for an afternoon of mulled wine, Christmas cake, mince pies and other such festive things. Oh, and lots of crisps - one of us got a *little* carried away on the crisp-buying front. (and it wasn't me ;))
So, I have baked a cake today, marzipaned and am about to ice another, made cinnamon cut-out cookies, made orange/lemon sorbet (hoping it freezes by tonight - slightly wishful thinking I suspect).
I've also made the bed up in the spare room and am about to fish out the Christmas tree and decorations.
This entertaining lark is hard work!

Friday, November 30, 2007

The end, done, finito etc

Welcome to the end of NaBloPoMo. I made it, you made it reading along. Done and dusted.
Now I can think about Christmas - nearly - tomorrow I can.
Last year I thought that having done a month I'd be much better at posting regularly - it didn't really work out that way. I admit I was somewhat distracted by the whole 'going to Peru' thing; so maybe this year it *will* make a difference.
Watch this space!!

I promised lots of Peru photos at the start and didn't follow through - so maybe we'll finish up with a few more to make up for it.

Thursday, November 29, 2007

False face must hide....

At some point I may have to admit to myself that I've been depressed for most of my life.
Because I think doing that might mean that I could stop feeling like I'm just not trying hard enough to be happy. That maybe it's not my fault. That maybe this is something that I've inherited along with the family silver. Or not, who knows.
I think that I have always felt at odds with the rest of the world. I think I met unkindness from my peers early on in life and I could not understand why. I think it's hard to realise that not everyone feels the way you do.
It seems like there is an expectation that childhood is 'the best time of your life'; that children are innocent and untouched and unaware of sadness and badness in life. And I think there (was) a feeling that children/young people aren't/can't be depressed. I think this attitude is changing - I think today there is much more awareness of it. I don't think there was so much in the 1970s.
I think I felt sad and didn't know it. Or didn't know that it was possible to change that. I think I did know that not everyone seemed to be that way - because I think I felt that it was my fault; my problem; that if I were able to be like other people then I'd feel happy.
I also think all these terms are horribly subjective; and that it's very hard to know how other people feel. I don't think I'm the only person in the world who puts of the 'I'm OK' face and lies and lies. (What's that quotation I'm trying to think of? Something from Shakespeare; possibly from Hamlet?)
I also fear that my memories are being tainted by the way I feel now and are not a true representation. Interesting conundrum, eh?

How's that for a serious entry at the end of NaBloPoMo?
One day left - light and fluffy? Or bad and serious? You choose.

Wednesday, November 28, 2007

I'll moan if I want to!

Well, the Xeloda is starting to have a few more side-effects now.
The skin on my right thumb and forefinger has gone all shiny and is peeling all over the place. It's looking like I'll have no fingerprints on them (Quick! Rush out and commit crimes! They'll never catch me! - I'm kidding, right?)
The skin on the soles of my feet is quite tender now and will blister and peel if I even *look* at shoes other than my trainers. This I found, to my sorrow, the other week when I wore (not *that* high) heels to a dinner party. I was limping with both feet (this is quite difficult in itself) by the end of the evening and the little toe on my left foot was entirely made up of blister. No kidding - there was no bit of skin that wasn't blistered on it. Nice!....Not so much.
I'm back in heartburn-city, drinking peppermint tea by the bucket-load to try and stave off the having to walk round the house with hand pressed to chest at all hours.
Plus, the old lower digestive system is starting to notice and rebel - lovely. Just what I need to make my attractiveness bloom - rushing to the toilet. Although 3am seems to be the time it likes to strike. At least I'm at home then.....
Oh, and the cuticles are disappearing. I don't get that. It happened with the previous chemo-varieties too . What have cuticles got to do with anything? It's problematic in that it's not good for the lymphoedema side of me.
Flying (or something. Too much blueberry pie?) seems to aggravated my hand a bit too. My fingers are looking decidedly podgy again - grrrr. So it's back to the lurvely sleeve and gauntlet - mmmm, sexy!

Hmm, owt else I can complain about? I'm just practising for my next Onc. appointment on Weds really. My oncologist worries about me if I don't arrive whinging and complaining. I think she's finding me entirely less interesting this time around. No far-out, more-unusual side-effects this time around. (I'm tempting fate, aren't I? What an idiot.) She won't want to know about my feet anyway - she doesn't 'do' feet.... ;)

In other news, we flew back from the States on the daytime flight rather than the red-eye yesterday. Wow, *so much* better for the jetlag....we left at 9am US time and landed (with help from a very kindly jetstream) 5 and three quarter hours later at around 7.45pm UK time. Home by 10pm and ready to go to bed at a usual hour - woke up (well, as usual, throughout the night) but was in fit state to get up at 7am (I didn't, mind you; but I *could* have if I'd wanted to!). None of the 'awake until 3am and unable to prise open eyelids until noon'. Getting up at 5am to get to the airport on time was less fun; but manageable since I hadn't been there long enough to get fully onto US time anyway. I'm converted I think. I always thought it would make more sense actually but had never actually done it.
During the course of the flight, I managed to tip a full cup of gingerale onto the (fortunately) empty seat next to me and karma returned the favour when one of the flight attendants knocked an orange-juice carton onto me - it mostly went on the floor thankfully. Plus, I managed to fit in all the requisite pills at relatively appropriate times.

Tuesday, November 27, 2007

Goin' to Graceland.

Why is it that everything I'm truly interested in has signs on like this??

Home again, home again. I'm on the plane back to slightly-warmer London.

Capecitabine/Xeloda is making the skin on my fingers all peely. It's annoying. Welcome to the world of the banal. Lalalalallaala.

Tomorrow, we return with jetlag.......

Monday, November 26, 2007

The view today....

Well, here is what my day looks like today.....damp, but pretty.

Sunday, November 25, 2007

Who's who?

After a couple of nights sleeping pretty well I was back to the not being able to sleep thing.
I think I was just feeling a bit down yesterday - we had dinner with my great-aunt and I felt a bit on display. You know, the kind of having to prove that you're doing OK. Regardless. Because I don't want her to know that I'm not. Or something. I don't know.
Then I was watching the DVD footage from the Peru trip in the summer - which was nice, but sad too. I watched myself and was amazed at how 'together' and confident I appeared. Relaxed even when I was scared out of my wits. I watched myself leading our final round-up - asking the girls to reflect on their experiences - trying to make sure we all went home with good feelings about the trip and I thought I was pretty damn good. I remembered why I came home feeling so much more positive about myself. I can't tap into it; but I can see why and where that came from. That woman seems completely different.
I find it had to reconcile all those different 'me's'. I'm starting to feel that it's probably normal. We're probably all different in different circumstances but I find that confuses me because I'm not sure who the 'real' me is. Am I the competent, successful, caring, understanding person? Or am I the distraught, ill, confused person? Both, of course. But how do I balance those? How can I be both in one person?

Saturday, November 24, 2007

Baby, when you're gone.....

I've been finding myself feeling a bit panic-y whilst I've been here. I keep seeing photos of myself - graduation photos, baby photos etc and I think it makes me realise that I will be missed when I'm no longer here. And that makes me feel terrible. It makes me feel so guilty that I will cause people to mourn; to feel so terribly sad. Perhaps that seems odd - perhaps it seems a bit big-headed. But it makes me feel terribly bad about myself. I don't want to be the cause of pain and sorrow.
I met my brother's girlfriend yesterday - she seems so nice. I like her a lot and I am so glad that my brother has found someone so great; someone else who sees how fantastic he is; someone who'll be there for him when I cannot be. I keep feeling like I see glimpses of the future - but a future that I may not be a part of.
So, I appear to have managed a week of being slightly upbeat before it all tumbled down again.
Oughts and shoulds and wishes all mishmashing together.
Plus, I have no knitting or yarn with me and I don't know what to do with my hands, never mind my head.
I know, I know; 'good situation', 'could be worse' - all of that. I suppose I just feel like the situation will be worse in time and therefore I might as well be there already.
What's the answer? A furry cat to heat me up beyond all endurance? I don't know anymore.

Friday, November 23, 2007

Hurried, fill in the NaBloPoMo requirements

We cheated - we had chicken.....which was fine by me.
Now I must go and eat more and then go to the New Balance Factory Store - because I'm all about the bargains. More later if I'm available. For some reason my brothers all wanting to spend time with me ;) Yay!

Thursday, November 22, 2007

Round and round we go, where we stop - noone knows!

Well, what a farce that flight turned out to be!!! Like something from M. Hulot's Holiday.
First the flight was going from Gate 20 - then it disappeared from the departure screens entirely; then we got all the way to Gate 20 only to be told that the crew were delayed by a traffic accident in London and we had to return to the departure lounge and wait for a new gate and departure time EXCEPT we couldn't go back the way we came, we had to go back via 'flight connections' and go through security again. When we got back to the departures area the screens said, wait for it........
Go to Gate 20!
After standing in a massive queue to get back from Gate 20!!
Hilarious! (ish)
Go we trekked all the way back to Gate 20 and still had to wait a while for the crew to get aboard and so their safety checks. So we left an hour late.
Still - we made it - something to be thankful for I'm sure.
It's been misty all morning but the sun has finally made an appearence and the orange-yellow leaves on the tree outside the window are positively glowing.
Plus, I had a heavy, grey cat come and stand on my chest at 6 this morning (thank you Max!) why does he insist on standing on the painful bits?? Still, it's nice to have a furry, purry thing around - even if he is a bit of a bruiser.

Hey! I'm in Boston peeps! (well, Boston suburbs) - I made it! How's that?

Wednesday, November 21, 2007

Yum - cake....

This post is a rush today since I'm trying to get sorted for the 'off'. So I'm leaving you with pre-season Christmas photos - my cake (which is gradually being pickled in brandy) and the mince-pies that 'worked' (i.e. the ones I didn't scoff because the puff pastry over-puffed and ejected the mincemeat onto the baking sheet.....)
Salivate at will......
I know there'll be types out there that say 'not before Thanksgiving!' - but the cake really does need time to sit and rest and absorb......
What are you baking for Christmas/Thanksgiving?

Tuesday, November 20, 2007

Leaving on a jet-plane...back next week.

I'm losing track of the days of the week - I was convinced today was Monday - it's not, by the way. This not working thing makes life very confusing. I can't quite believe that I'm flying to the States tomorrow evening - especially since in my dismal moments I'd been convinced that I'd never see the place again (or get clawed by the cat again).
And now I've just noticed I've scratched myself on one of my lymphoedemic fingers - so I hope that doesn't go funky and fall off before I manage to get back. I'm doing it all the time and I've already had one infection in that finger - and I couldn't even see where I might have damaged myself on that occasion. I'll be taking my antibiotics with me; along with all the other medication - I hope they don't search my bag otherwise they'll think I'm some druggie. I think I'd better carry my 'I've got cancer' letter. (Yay! - not)
I just had a thrilling time trying to speak to the airline yesterday to ask for 'meet and assist' at the airport - but they said they couldn't guarantee it unless I also booked a wheelchair.....well, I'm not doing *that* - damnit, I can still bloody walk; it's just that if I have to stand in a 30 min security queue I'm going to get stressed, get hot and collapse in a heap. So, if they have a member of staff available then they will help; but otherwise, I'm on my own. (Just they wait until I feign a faint!! ;))
So, any Bostonians out there? Or New Englanders? How's the weather? Any leaves left on the trees? Have I missed all the leaf color-change? When's the snow going to start?

Monday, November 19, 2007

Snow, snow, snow, snow, snow....

What was dull and drear and rainy yesterday morning took a turn for the more interesting when it got colder later in the day and we came out of the cinema (from seeing Stardust) to find snow! Pretty unusual for November in the midlands. It definitely made my day. I love the snow - probably because it's the exception to the norm around here and I don't have to traipse through it for months at a time. I was also impressed with myself for working out that using the red-eye reduction function on my new camera would show the snow best in the dark.
Of course, this morning it's all vanished bar a tiny pile against the wall...easy come, easy go.

Sunday, November 18, 2007

To sleep perchance to dream - no thanks

It's absolutely tipping down with rain here today. Dull and drear and we still have no curtains so there's nothing to shut out the cold with.
I am eating a persimmon, or a Sharon fruit or, apparently they're also called Kaki(!). I am alarmed to read that eating them unripe can cause bezoars. I could be in a Harry Potter film! I'm not sure how to know if they're ripe - I usually judge fruit ripeness based on whether I can bite into it without breaking a tooth - and I can, so.....here's hoping I haven't just grown a bezoar. (I think my oncologist would roll her eyes at that.....)

I had *terrible* dreams last night. I'm blaming the weather. I dreamt there were people breaking into my home - I saw one of them and hid and then they were peering through the window trying to see me and then they were up a ladder coming through an upstairs window; so I told them to go away. It took some negotiation but they were caught by the police. And then I discovered the people over the road had been watching it through binoculars like it was some sort of show. A bit scary - I woke up and went back to sleep, where the dreams got worse.
Now, I was in charge of trying to rescue 3 children who were being taken to be part of some medical experiments - it was one of those deals where you know what's going to happen but you're pretending you don't because the 'baddies' are pretending to be the 'goodies'. So we tried to escape and we got out and set off running away and finally arrived in some place where we found somewhere to stay the night but of course, the person who owned the place we were staying was in league with the 'baddies' so we were caught all over again and then the smallest girl had her legs sliced up. It was horrible. The bones were sliced lengthways and laid our neatly in front of me. Luckily, though, she seemed to still be able to stand up and run after a fashion (this part makes even less sense) so we escaped again and got in a boat to go down a river and then I woke up again.
Went back to sleep again and now we'd escaped and we were at school - I guess I was
like a teacher but not and the boy who'd been one of the children turned up and he was crippled and on crutches. And then, thank goodness, I woke up and it was late enough to get up and leap in the shower.

Hideous night, or what? I seriously hope those dreams don't mean anything. I hate nights when I have very vivid dreams - even if they're not horrible ones because I never feel like I've slept properly. It feels like I've been awake the whole night doing the things in the dream. Ugh. Can you tell that sleep's become a big issue for me now?
I hope you're sleeping better than me. Tell me a nice dream to take away my horrid ones.

Saturday, November 17, 2007


">Photo Sharing and Video Hosting at PhotobucketI've been looking at some excellent pictures on NaBloPoMo so I felt inspired to to share a few more Peru pictures with you. This is in Urubamba where Kiya Survivors have their centre and this is the view from the fantastic hostel we were staying at. The mountains with the sun setting behind them was lovely at the end of a tough day. True, many of my days involved staying at home with whomever was currently being sick; but that can still be pretty tough - especially the days with people who can't stop shaking or who cannot stop being sick. Poor things." border="0" alt="" />

Friday, November 16, 2007

Surprisingly thankful

Well, I've reached day 16 and run out of steam - I don't know what to say today.

That said, today's not shaping up too badly - I have actually had a shower and washed my hair today. Some days that's too much for me - so, yay me! I will also step out of the house today. True, only to the supermarket and only because the Dear Other is insisting that he won't drive - lazy old me would prefer it if he did.....

Are these bad signs? The other day I managed walking the distance I used to walk to work. I did feel like I'd walked quite far and I'm not sure I'd go straight out and do the same again in a hurry. But it was only a couple of miles and I used to cover that in 40 minutes easily. I can obviously still do it but without quite so much ease. What with the dormant verdict I feel even more lost sitting around at home. I know I still couldn't get up and do a full days work. I think it's because I'm so much less sick and unwell than I was with the chemo 2 years ago. But then, that *really* knocked me out so I guess that's not so surprising. Just because it's not as bad as last time doesn't mean I'm 100% well.

I think, having had a day or two to assimilate, I am feeling pleased with the chemo's apparent success. Stopping it growing is a good thing - it's not nothing! It hopefully means that we're in control again rather than it running the show. (hear that , cancer?? You've lost some power now - just wait and see what happens next, because we're running this show!)
I think I may be finding the groove. The little bit of bite and fight that gets you through. Yes, alright, a little hope. I'm not sure what the hope is or what it's hoping for but there's a glimmer. So, I'm upping sticks and heading State-side for Thanksgiving with my mum and dad and my brother - and at least we've got a little something to say 'thank you' for. I have even found a company that will insure me at not too extortionate a cost. Insure Pink is a broker that has finally realised that cancer doesn't necessarily make you an appalling risk for travel insurance. For £70-odd (GBP) they've insured me - including the cancer. For Christmas last year I paid £80-odd (GBP) *excluding* anything cancer related - and then I didn't have mets....and nothing happened to me of course and I didn't make any claim. Hopefully it will be the same this time.
Now I just have to sweet-talk the airline into cutting us through to the front of the security queue - gotta have some perks, right?

Turkey and pumpkin pie - here I come!

Thursday, November 15, 2007

Picture IDs

Well, few of you are biting on this one, so I'll give you the answer....
What do this and this have in common?

The answer is this: Yes, an overwhelmingly burnt piece of toast......

In the first picture you can just see the haze of smoke in the air, especially around the lamp. In the second, the vast amount of burntness that I scraped off before eating it. With whisky marmalade - why yes, I do have booze at breakfast ;)

Wednesday, November 14, 2007

Doormouse in the teapot

Dormant was the word of the day - dormant. As in, the cancer is no longer growning - it hasn't shrunk either - but it's not growing. It's dormant.

This is good news, I think.

It's also disappointing news - of course it is! Because really, the best news would be 'gosh, the cancer's completely vanished - off you go and have a nice (long) life!'. This is unrealistic - I know that. But it's still the only news I could hear and would accept as 'good'. This news is acceptable. Pleasing. Hopefull. But the word 'dormant' really does come with the implication of re-awakening. I.e. it's sleeping now but will be back eventually.

It's a shame that I can't just jump with joy over this and grab it and run with it - but that's just me, I guess.

Tuesday, November 13, 2007

Day of reckoning

I didn't know what to write today and that is because tomorrow is Clinic Day and CT results Day and that's pretty much consuming all the space in my head currently. I slept appallingly last night but I don't feel like I'll sleep tonight either.

Tomorrow is also crap appointment-times day. I've got to get there at 9am in order to get my bloods taken in the chemo-suite. I much prefer Megan in the chemo-suite to do it than to go and wait for the general bods in the blood room but that means I've got to be there bright and early so that she can do it before it gets busy (and boy does it get busy later on!). I cannot begin to tell you how much I regret letting them persuade me to have my portocath removed. I should have trusted my instinct, which was definitely scared stiff about having it taken out and then needing it again. But I did it because I thought it would help me to move on - to stop being a cancer-patient - sadly I'm not sure that even worked really. I still have it somewhere - perhaps they'd put it back in for me.... ;) (KIDDING!) Anyway, then I have to wait around until 11.15am for my appointment with the oncologist; but the last two times I've been they've been a doctor short and things have been running *so* slowly and by 11.15am they'll have had lots of time to get behind schedule so I could end up having to wait for *ages*. Which is really bad for my nerves - I also tend to forget all the questions I wanted to ask if I had to sit around. The panic takes up all the room in my head. The receptionist said that if I turned up early then I might be able to be seen earlier; but if I don't get slotted in earlier then I'll end up having to wait in the Onc. corridor for over an hour - and that really will drive me to insanity. Decisions, decisions....

Plus, I'm really hoping that we don't have a replay of the last two prescription-cock-ups. I'll be scanning the sheet veerrry closely before leaving the Onc.

So, if I'm less than scintillating this evening then I suggest that you go and read (or re-read) yesterday's post. Particularly if you're a person of the knit. And, in fact, I'll accept interest from people who aren't of the knit but need a bit of cheering up. Leave me a comment or send me an email (address on my profile page) and tell me why you need cheering up and I'll select 2 additional folk to receive (why, yes, I do like making additional work for myself!) If you're of the knitting persuasion don't feel alarmed - you don't have to knock out 3 grand sweaters to send of - the knitted items can be little things, funny things, anything you can think of really.
So, join the knitty goodness!

Monday, November 12, 2007

Pay it forward and other fantastic opportunities

I'm a lucky, lucky girl.

The lovely, fantastic necklace I ordered from Rebel1in8 from her Etsy shop has arrived via dad-post a couple of days ago and I haven't stopped wearing it since (well, I've taken in off at night for fear of being strangled or worse, damaging it). I love it and it makes me feel good wearing it.
The beads look even more beautiful in real-technicolor-life. So, if you need a little Rebel in your life then go and get yourself one!

The other yum item that actually arrived today is the snuggliest, squishyist, take-it-to-bed-with-you, lurvely yarn. The lovely yarn spun for me by the super-duper Pocketina.
The colour of it is full of greens - my favourite colour - with hints of yellowyness and purple and such a lovely texture with super thick fuzzyness and finely contrasting bits.
You think I'm kidding about the sleeping with it bit, don't you?..

You can peek at what it looks like for yourself on her flickr pages.
Go, look, I'm not going anywhere until you've appropriately 'oohed'.
I was so totally blown away when she told me she wanted to send me some yarn - and then she wrote such a lovely message to go with it that I'm totally going around squeezing the yarn and smelling it (I don't know why I keep smelling it - it doesn't smell of anything - but I feel the need to take it in with all my senses.....alright - except for taste - I'm not licking it or anything. What, you think I'm weird or something?)

In other, interesting news, I'm rather behind at posting my link for Pay It Forward - knitting style.
The first 3 people to comment on this blog post (who profess themselves to be knitters/crocheters/fibre-creators) will receive a knitted item, as knitted by me, within 6 months.
In return they must post on their blog and also commit to doing the same (i.e. knitting and sending to 3 more people) and so on.
I'm going to be the lucky recipient of something knitted by the lovely Lauren from StitchandBitchLondon - I'm very excited.
So, post a comment - please make sure I have an email address so I can contact you - otherwise I'll have problems!!

Finally, what do the following two pictures have in common?

Sunday, November 11, 2007

Project Peru 2007

I took this photo in Lima this summer - I'm glad I managed to catch it as we went by on the bus to the airport because it summed up for me quite a lot about the conditions in Lima.

There were some very high class, 'nice' areas in Lima and obviously there were people who earned plenty of money, however there were also some real places where people obviously had very little and this photo with the advertisement for the fancy new car in contrast with the old banger parked in front of it really caught that dichotomy for me.

There were great swathes of Lima that looked like a grand building site. People often seemed to be living in the lower stories whilst new bits were built on top. It looked like shoeboxes stacked one on top of the other and with the steep hills in areas made it look even more like a giant stack. But Peru was full of such friendly people who were all interested in us and were prepared to share their lives with us. They were fantastic.

Finally, this picture is of the statue in El Parque del Amor in the Mireflores area of Lima. A park for lovers with a statue to commemorate love rather than struggle and war.
Lima and Peru were full of fantastically beautiful places - each so incredibly different; but still awesome. I feel so privileged to have been there and seen it - that cancer held back for long enough to let me get there and to have travelled with such a wonderful group of girls and women. Looking back on our photos I realise I miss them all.

Saturday, November 10, 2007

Mind loop

Dear God - please stop me from playing 'Breathe' by Anna Nalick over and over......I need to go out.
Step away from the computer........

What's the alternative?

Well, I whined a great deal about being 'too hot' last night and the result was that the referral letter to the Royal London Homeopathic Hospital's Complementary Cancer Care Programme finally arrived. How's that for a result?!
4th December I will meet Dr Sosie Kassab; or, at least, one of her team. She's been recommended (and I've been referred by) my oncologist - and she's not one to suffer fools gladly. Any praise or recommendation from her I'll grab with both hands.
I'm also going back to the London Haven; partly because I need to something to get up for on most days and partly because I guess I need a bit more TLC. Maybe I can sleep whilst I'm there ;)

This takes us into the tricky area of do I really believe these things work - I think there's a lot of evidence (medical) for the potential effectiveness of homeopathy, so I shall be interested to see what happens there. Of course, I'm also at a point of such desperation with it that if someone told me to stand on one leg for half an hour a day and then turn around three times and touch the ground whilst saying 'I believe in cancer-fairies' - I'd do it. I actually don't care what it is if it works. Well, within reason. I admit, I'm somewhat more sceptical about things like Reflexology and Reiki (to name two that I actually have experience of). I don't really see how they work or why they should. In both cases I enjoyed them - an hour to just relax and lay somewhere whilst someone is sympathetic about what you're going through. Plus with the reflexology - a foot massage. What's not good about that? Do I believe that that the foot massage moves the toxins out of other bits of my body? I dunno - I don't understand how it would but maybe I just don't know enough about it.....
The reiki - that was odd - I think I just snoozed my way through it really. I did have an odd experience of a sudden start in my body and a white light even when my eyes were closed. But I think that might just have been me falling asleep......
The one thing I really do need to avoid are the 'food facists' - I do believe that a healthy diet is important - and I'm pretty good when I'm not feeling too depressed; but I won't be lectured about 'acid ash' and the 'deadly dairy'. Perhaps that work for some people but it just makes me feel miserable, useless (because I can't stick to that sort of diet) and pissed off. Frankly, there's not much point saving this life if I'm going to spend it feeling miserable and guilty about food.
So there, now!

I'm actually loathe to ask you any questions about this for fear of grave recriminations - but, share your thoughts or experiences if you're so minded......

Friday, November 09, 2007

Drip drop

My neck is sweating. Whose neck sweats? I am so gutted about having had to start the Zoladex again. I was so happy when I thought I'd finished in August. That was the only way I got through the summer - by just saying to myself 'only a few more months - you don't have to do any more summers like this'. And it wasn't even a particularly hot summer.
But then the lump reared its ugly head in September and I had to start them again. And the hot flushes are worse again. So bad, that today I actually caught myself thinking that it would be better to die that go through another summer with hot flushes.
Which is ridiculous. I thought immediately - 'that's ridiculous - it so would not be'. I think I sound melodramatic when I say to people that they're going to drive me into a gibbering wreck of a woman; but I really, actually do think that. I really, actually think that one day I'm just going to sink to the ground and bang my head on it over and over again; or just start muttering nonsense. It sounds so pathetic - 'I'm hot' - I'm sure people think ' how bad can it be - it's just feeling too hot' but by the time I haven't slept through the night for *two years* and I continually feel sweaty and sticky and disgusting - it's amazing I can still bear to live with myself. It's amazing that I can string even two words together. I feel like a disgusting creature who no-one in their right mind would want to be near and then combine that with hating the way I look physically and it's amazing I still exist.
Sleep - I used to put my head on my pillow, fall asleep and not wake up until morning. Or if I did wake in the night, then I'd look at the time, roll over and fall asleep again. Now, I can sleep for a max of 4 hours straight on a good night - then I wake up, sticking to my sheets and can still be awake 2 hours later, tossing and turning, going hot and then cold and then hot, repeat ad nauseam. If I get back to sleep then it's usually for no more than an hour at a time. I've been given Lorazepam - which doesn't make me fall asleep; it's a muscle relaxant - so I lay there, relaxed, but hot and awake. Nice.
The best night's sleep I've had in the last year was the night before last when I finally resorted to codeine to get rid of my headache. I fell asleep pronto (I usually lie awake for up to an hour listening to Michael Palin or Garrison Keillor) and then the codeine made me so drowsy that when I woke up, I managed to sleep again - for nearly 12 hours. *12 hours*. I cannot even recall when I last slept that long. It wasn't the best quality sleep and I woke up feeling groggy but, by gum, it was still pretty damn good. Shame I can't just knock myself out of codeine every night. (No, I am not stupid, I shan't be doing that.)
Exciting needle sticking and pamidronate drip today. Thankfully my (fave) nurse in the chemosuite knows how to get into my veins and all was done without unecessary bruising.

I would take a picture to demonstrate the lack of success in the CT department earlier this week but the camera wants new batteries first and I can't find them.

I think I've run out of steam now - but I have written quite a lot this evening - I think wearing my Fussy shirt today has helped the word-stream....

Thursday, November 08, 2007

The rain in Spain

Ugh, hate - Xeloda. Messing with my lower digestive system. (Why yes, that is me being polite about saying it's UPSETTING MY BOWELS.) Just the opposite way round from all the other chemo I had, which had the exactly the other effect.
Funnily enough - neither of them is a fun side-effect.
Am nursing lovely cramps and waiting for it all to eff-off.
(Are you listening bowels??)

Haha. How many people can I put off ever reading my blog again?......

How I wish it were the diamond effect.

Wednesday, November 07, 2007

Head falling off

Argh! Argh! Argh!
My wireless router is not working....I am having to sit, at my desk, in order to access the internet.
This is appalling. Mostly from the point of view that I am so lazy that having to sit at my desk rather than on the sofa alarms me.....

Mother of all headaches today that refuses to shift - you'll have to entertain yourselves today with some Peru pictures of Aguas Calientes and Machu Picchu:

Tuesday, November 06, 2007

In which our heroine.....chooses curtains

Snaps to April (I'd link to you but you haven't left your url) for her spotting that yesterday was indeed Guy Fawkes Night - or Bonfire Night as we also call it. I've not been to an actual Bonfire and fireworks display for years - which is very disappointing. This year I really intended to - and I really hoped my brother would be visiting so we could go together like when we were kids. But he couldn't and in the end I couldn't be bothered. However our people in neighbouring streets actually had fireworks in their back-gardens which meant I could see them from our bedroom window, in bed. Now that is what I call service - and a good bonfire night. Lots of lovely sparkles and a warm feather quilt....perfect. The Dear Other declares that I would spend my entire life in bed if I could - I fear he may be right. You can knit and read and (in my house) surf the net from bed; so why get up? It's cold outside the covers (except when I'm having a hot flush) - bed is best. Why stand if you can sit, why sit if you can lay down? I don't think of myself as lazy; I just like to be *comfy*.

Today you have options.
For the squeamish amongst you - head further down the post and give me your opinions on curtain fabrics for mah bedroom.
For the unsqueamish amongst you there are pictures - of my scars. In order not to catch anyone unawares you'll have to head over to flickr to see them. They are just (just?) scars now - 2 years down the line - my mets diagnosis in September distracted me from the fact that it was 2 years since my mastectomy. I haven't talked about all the surgery lark for a while now. Mostly because I'm sturdily ignoring the scars as much as I can. I still don't like catching sight of my reflection unprepared in the bathroom mirror. I still have to stop myself from flinching when the Dear Other touches it - he likes the fact that the skin is so very smooth and soft along the line of the scar. I think I care far more than he ever has. ::sigh:: grrrr

The options:

And in close up:
Opinions please.....

Monday, November 05, 2007


Yesterday I was commenting on NaBloPoMo blogs with photos that I liked on them. So I thought that today, since I have this new camera and all, I'd post a picture from my walk to the Coop this morning.

This is what Northampton looks like this morning......and this was the nice trees - others look bare and bleak.

No wonder I'm depressed.!

Today is also Christmas Cake baking day. Well, it should have been ages ago but I have no impetus for doing things any more. Total lethargy. But, it has been done and is in the oven. The fruit soaked in a mixture of brandy, sherry and a bit of orange juice for 24 hours. I do know someone who soaks hers for 5 days without OJ ;) But this is for our Christmas drinks 'do' at the start of December so I didn't think it was so critical. Besides, some people will be driving ;)
So, what with knitting little mini stockings being knit, it's starting to feel "a lot like Christmas"....ish.

Sunday, November 04, 2007

The discrete chemo-taker

Ugh. We went out to dinner last night at the house of some people we don't know terribly well - people from the Other Half's church. And there were 2 other couples there who we didn't really know. Which led to some rather stilted conversation although they were all very nice. I'm just really hopeless with people I don't really know - I can manage a few, but 6 is too many and I just end up clamming up. I'm really just shy at heart.

So, dinner was fascinating - all veggie and dairy-free. We had carrot and ginger soup, then home-made lemon sorbet, then roast pumpkin with a green veggie melange with red pepper and a sort of curried lentil filling plus cauliflower and finishing up with pear gingerbread. I'm still waiting to see how my stomach is going to react to all those veggie - it's been misbehaving on and off recently - usually at 3am - nice (not).

So we got to the end of dinner and I had to take my Xeloda (within 30mins of eating) and I debated excusing myself and taking them in the bathroom, but then I realised that I wouldn't have a glass to put water in to take them so I had to take them at the dinner table - plus I had to ask for a glass that wasn't a wine glass (I wasn't drinking alcohol anyway). Which I did and I tried to be subtle about it but obviously taking 6 tablets with an ocean's-worth of water is a bit hard to do discretely....
So, the chap next to me says 'those look like my pills' and I said 'I don't they will be' (thinking 'I don't think so! Shut up') and he went 'statins' and I said 'um, no, um, these are chemotherapy tablets' which shut him up for a minute and then he went 'they look just like mine' and I made some ha-ha comment about the terrible colours they make these medications, blah, blah. All the while feeling awful. I didn't want to tell this guy, or anyone about them; although our hosts and one of the other couples will know about my cancer from the church - I just couldn't think what to say (other than 'mind your own beeswax!'.) I'm a terrible liar in these situations and I didn't want to not answer because then they might be thinking who-knows-what....
(Dear Other Half suggested afterwards that I should have said they were hormone pills because of my sex-change operation - funny, but I think *not*)

What would you have said? What would you have done? How do you not say 'I have metastatic breast cancer in my bones and lung and I have to take chemotherapy in order to try not to die any time soon...' (No, I didn't actually say that; but I bet that's where his thoughts took him.)

Urgle. Hate.

Saturday, November 03, 2007

The next level of insanity

Ha ha!! Don't laugh. I've signed up for NaNoWriMo.....
I fully expect to fail to finish and to write absolute dross but people keep telling me I need something to do - although I think they meant something that got me out of the house ;)

I am, bizarrely perhaps, currently writing something that might be classed as Sci-Fi/Fantasy. Think Elizabeth Moon/Anne McCaffrey.....

I'm not sure I dare post any of it here for fear you'll all laugh hysterically, or you'll simply decide I'm not the person you thought I was and sod off.

Have any of you done NaNoWriMo? Are you doing it this year?

It's funny, people have often encouraged me to write a book - given the number I read I think they thought it was a given that I'd be a writer too. However I've never felt the urge - too much pressure - the old 'getting it right' thing. However NaNoWriMo has given me permission to write total crap. And of course, it's the ultimate in escapism - not only is it getting to retreat into another world/life - it gets to be one that I fashion myself. What will it tell me about myself? That, I think, will be the most interesting thing. They say that when writing, you should write about what you know - but *how* exactly do you do that if you're writing fantasy/sci-fi? The whole point is that it has some strange-ness to it. Although, I suppose, not too much - otherwise we wouldn't read it, we wouldn't be able to relate to the characters or their situations......

Ponder, ponder

Friday, November 02, 2007


I have finally given in, or bitten the bullet or some such and bought a camera capable of taking decent enough pictures to upload here.

Too bad, folks, that means you get to look at knitting examples!!

This here is Mrs Beeton by Brenda Dayne from Knitty. I've knitted about 4 versions of these so far because people keep seeing them and going 'oh, those are nice' in that meaningful tone of voice. This is the second thing I ever knitted on dpns - not bad, eh? I actually like dpns very much - once I got past the feeling that I was trying to knit with a very unwilling porcupine.....

Thursday, November 01, 2007

Welcome greeness, pink go away

Oh thank heavens, October is over and I can go back to the more soothing green. Although it's looking a little more pea-colored than I would like - I'm sure it wasn't that color to start with....

I really do wish I knew how to do the fancy blog designing I see going on. I'd like a pretty banner rather than my rather plain, austere, blank heading......any good recommendations for sites that tell absolute dunces how to start this sort of thing??

My plans for NaBloPoMo are a little more ambitious this year. I think I'm going to have a theme for each day of the week (if I can come up with enough) and I'd like to pose you a daily question. It might just be for recommendations or it might be a bit more like homework......beware!!! :)

Watch this space!

Bearing in mind that I thought today was the last day of October and not the first of November; don't expect too much!!!!

Monday, October 29, 2007

Some things are worse than cancer

Argh! October, please end - I want to turn my blog back to a livable-with colour. Pink is yak, yak, yak and I cannot face looking at my own blog at the moment.

Those of you who have noticed this years NaBloPoMo icon on the site will all be laughing at the prospect of me posting every day - since I currently can't get my finger out to post once a week at the moment. Cease and desist - if necessary I'll be posting a photo from Peru to fill the gaps.....there are some goodies!!

In the meantime, if breast cancer awareness is *making* you sick and you'd like to interest yourself in some other cause then I'd like to recommend Kiya Survivors who provide fantastic support and help for children with special needs in Peru. These children have often been abused and don't have opportunities for education in the mainstream and Kiya educate and offer physiotherapy and loads of other things for them. They are extremely deserving and I and the girls I visited Kiya with this summer were blown away by the incredible staff and wonderful, fun, amazing children there. On my behalf, I'd rather you gave *them* support than bought hideous pink things this October.

Monday, October 15, 2007

Yuck - pink

Oh, am late but have Pinked for October, finally.

Am still breathing

BTW - the *previous* post title should be sung to the tune of the refrain from from Rock the Casbah by The Clash. Of course. It just occurred to me that this might not be obvious and that perhaps the whole rest of the world isn't in my head hearing me hum. (Why the hell not!? You don't know what you're missing!)
I'm currently chortling because the last two things I downloaded from I-tunes are 'Somewhere over the Rainbow' sung by Judy Garland and then 'Rock the Casbah' by The Clash. Am amused.

I have been slack and have been hiding and weeping etc and generally feeling sorry for myself and convinced that am dying. Am not, or at least according to the medic types I'm not.

Bad old me has not judged the caption competition - you nearly all chickened out in the wake of Snoskred's quite alarmingly imaginative entry. Sadly, I don't think a single of her suggestions were correct - or perhaps I mean, fortunately..... ;) So I am withholding the genuine instruction card - unless someone begs me for it. There were also valiant entries from Pocketina and Dorothy. All of these did spark and smile and perhaps also a guffaw (fahbulous word, darlink).
So I think all deserve prizes so those of you who email me your address will receive something spiffing in the mail - although I'm not sure what yet. Obviously it ought to be a share of all those diamonds I'm acquiring. Sadly, I'm too greedy for that and I'm saving them to decorate my bathroom anyway.....

Toodles. And get singing along to The Clash!

Wednesday, September 26, 2007

Doing the ostrich

Sorry, I've run out of good humour this evening.
I did laugh at the entries - and raised my eyebrows - and went 'eh?' in an amused way but tonight I'm full of the panics so I can't quite laugh.
Tonight I have 2 more days left on this cycle of the Xeloda and I'm realising how many questions I haven't asked. And I'm still too scared of the answers to ask them.
I haven't asked if this drug is going to help the cancer in the lungs and the lymph system. There seemed to be much more talk about treating the cancer in the bones and not much reference to the rest so I'm left wondering if that's because there's not much they can do about that.
I'm scared that I'm being lied to - by omission, rather than directly. Or, not lied to; but protected from the full truth of matters.
It may very well be true that this drug can control cancer in the bones for quite a while; but if it goes wild elsewhere in me in the meantime then that may not mean very much.
My oncologist referred to being able to help me get early retirement on ill-health grounds (which at the age of 30 is very scary) but is that an indirect way of hinting that I don't have a lot of time?
The problem to my mind is that if the cancer is in my lymph system then it could be setting up shop anywhere. And I keep hearing the word 'aggressive' in my head; which was how someone referred to my cancer this week - not my doctor, someone else.
I am so scared.
And I'm just convinced that next week they're going to tell me there's no point in continuing this treatment because it's in too much of my body. Which is completely based on fantasy in my head because they've done no new tests; there's no new data. Just panic. Just fear. Just me running out of time.
I'm really angry about being so optimistic last time. I tried to be really positive. I told myself that I could beat the cancer; that I would win. And I believed that was an option. Now I feel like that was total naivety - based on the impressions I had from what people were saying to me. No-one ever said that there was a bigger likelihood of it coming back than of it not coming back and that's what I feel like they all thought. No-one has said it but I feel like a chump for trying to even be optimistic. Because now it has come back; I'm crushed. I'm absolutely shattered by this. And not only do I not want to die but I feel *stupid* for ever wittering on at people about 'if it hasn't come back in five years'. For ever giving other people the impression that I would beat it. Stupid, stupid, stupid.
And I'm still focusing on the little things. I'm weeping over the fact that I'll never have children when I should be weeping over the fact I'll probably die before my parents.
Well, I'm weeping over that too.
And don't tell me to be/think positive tonight - maybe tomorrow - but not tonight. I feel like I can't be positive because I tried that and cancer still came back - and I can not keep taking the blows of hopes dashed.

Friday, September 21, 2007

Guess the side effect

I'm just not feeling like I've adequately expressed the humour I find in my instruction sheet for my Xeloda side-effects; so I scanned them for your perusement and delight:

Now, I'm thinking you should all guess the side-effect from the picture.....
The entry with the most correct pictures identified will have the *very*, real, actual sheet mailed to them for their very own. The entry that makes me laugh the most will receive something else that I haven't decided upon yet. OK?

Go to it!!

Tuesday, September 18, 2007

My blog posts are better than your blog posts - or are they?

This is going to be a boring post full of banal things like:
"I can't believe I'm doing this again.
It is *sooooo* not fair that I have cancer.
I hate chemotherapy."
And other things that end in:

Hmmmm, I've said it all.


On a deeper and more meaningful level:

In other news, my brother had the audacity to go and see Eddie Izzard when he was in LA and met him afterwards and then proceeded not to tell me this for over a month. He is useless. That is utterly uncalled for and I'd sulk if he wasn't all the way in Boston and wouldn't know that I was sulking. (For what is the point of sulking if the person you're sulking with isn't living with your sulky silence?!)

Finally, I have a dilemma:
Would it be in poor taste and/or demoralising to other people in the Onc. clinic and chemosuite to wear this t-shirt?

See, it makes me laugh - but I know I'm a bit warped so I thought I'd take advice.......
I mean, in my eyes it is *obviously* a joke but I figure some people might not see that - especially when sat in the chemosuite - nothing seems very funny in there. Apart from pictures of people having diarrhoea, apparently.....and I think that's still probably just me.

Friday, September 14, 2007

Ah, Xeloda!

Xeloda (Capecitabine) (doesn't it just trip off the tongue - I'm sure there's a song with this in it.....what am I thinking of??)
Well, they look like effing orange horse pills (the pills are orange, not the horse) and I take 4 large ones and 2 small ones twice a day starting tomorrow for 2 weeks then I get a week off and then we start again - whee! The absolute best bit is that it comes with its' own instruction booklet that includes a CD-ROM.
Yes, really.
No kidding.
I proceeded to laugh hysterically whilst Megan tried to tell me about the side effects.
The booklet also includes a little chart where you can mark off your pills and also chart your side effects. It has little pictures in case you're not sure what throwing up or diarrhoea is - helpful, eh?!
Truly hilarious - it really cheered me up no end. Plus you can chart the relative severity of your side effects - just in case having them isn't enough.
In the meantime they dripped me full of the bone strengthening drug - Pamidronate - another fancy name. I appear to have one usable vein for cannulas - so that's going to be fun, not.

In more exciting news - my invitation for Ravelry arrived today. Which was a nice cheerer-uper for the day. Now I just have to take lots of photos of things. Which, let's face it, I'll now have time to do - ironic, eh?

And, finalmente, I'll leave you with a picture of Peruvian llamas at Machu Picchu:

Thursday, September 13, 2007

karma chemo

Well, Lorazepam has been my sleepy friend for a week now. I discover it's not as effective when I take it at the same time as my Gabapentin. I've been told to stop taking the Tamoxifen which makes me feel a bit scared. Even though the Tamoxifen, which was supposed to keep me 'safe', obviously hasn't done it's job - I still feel vaguely unsettled. Which is mad really because hey, I've got cancer in my bones and lung - OK, it could be worse - it could be a lot worse. But it's still pretty bad.
It's pretty bad.
I'm starting chemo again on Friday - tomorrow. Tablet form this time though - which is definitely good - because I'm fuming that I let them take my portocath out. Apparently if the tablets work then I can be on them 'long-term'. I'm hoping this is a good sign because I was too chicken to ask what sort of time frame I was looking at. But people were going on about 'living' and doing things and stuff so they don't expect this to eat me tomorrow. However, to date, I haven't been renowned for having my cancer in the 'expected way'.
I'm still doing lots of crying hysterically - I can't stop apologising to my partner and family. I feel so bad and so sorry for them. I don't want them to have to go through this; I don't want them to have to watch me fade away when the time comes. I feel like I am a burden - an emotional burden. They tell me to shut up and stop being so ridiculous (in a rather nicer way of course!) but,....I still feel it.
I also feel a bit embarassed that it's come back. I've been going round saying to people that everything seemed to be fine, so far, at this point. And now I just look really dumb.
Time to wail a bit more.

Oh, but thank you nice people, all. I'll get back to you properly in due course.

Wednesday, September 12, 2007


I went to Norfolk for the weekend.
I got very sandy due to the wind but the sun shone.
I have cancer growing in my spine, hip and lung.
It's small, but there.


And this is apparently not a surprise to the medical team. Apparently it can happen and apparently when they were being positive with me there was a much smaller chance of a good outcome than I realised.

Still not going to die to tomorrow. But....

Friday, September 07, 2007

When things that shouldn't happen happen

Well I've been doing the old see-sawing thing but mostly indulging in floods of tears over everyone I see.
I get a bit scared when people are so nice to me. And that's what they keep doing. It makes me feel like they think I need all the help I can get.
Which I probably do.
Can. not. believe. this. is. happening.

This is not supposed to happen.


Ahhh, crap - I didn't make this very clear. Medical people, nurses etc keep being very nice to me... making me cups of tea, telling me to let them know if there's 'anything they can do' and when I make the polite noises about 'oh thank you, very kind' they go' no, no - just let me know/say'. And I find that eerie - I don't remember it last time and it's making me feel like they know stuff I don't know (which they obviously do). Now it may be because I'm not being quite so stoic in public this time around but I mostly fear that it's because they think I'm on my last legs.

The rest of you can be as nice-as-pie all you like. Preferrably with lashings of 'it's going to be fine'.
Oops, pseudo-in-laws here, must dash

Wednesday, September 05, 2007

Looking on the dark side

There may have been something about more than one lymphnode today with the Lymphoedema consultant - I'm losing my hearing. People around me talk but I can't really hear what they're saying. And I don't think it's the Lorazepam.

I simply can't be positive about this because I couldn't stand the trauma if/when the result is bad. It's better to expect the worst and have the chance of a better result.

CT scan tomorrow - I've not had one of those before; it was MRI's before.


Tuesday, September 04, 2007

Fuck lymphnodes

Fucked, fucked, fucked.
Lymphnode palpable; FNA; bonescan and CT scan to come.
The fucker is most likely back. Sure, there's a slim chance that it's not; that it's a reaction to whatever dread diseases I came into contact with in Peru but I'm not holding my breath.

I stopped focusing on it.
I made a deal.
I said that I wanted to get as far as Peru - I didn't look far enough. I didn't deal cleverly enough.
How can I fight this again? When deep in my heart I feel like I can only fight this once. Beating it once meant that it was beatable. If it comes again then that's it - it's eating away at me.

I can't bear this. Please can I just stop living now?

Friday, August 31, 2007

The illumination, the earthquake and the Andes

Well, I'm home again.
I feel like I've been gone a lifetime and come back as someone else.
Someone else with Peruvian alpaca yarn.

Peru was an experience. Travelling with a group of 16 young women was a fantastic experience. Fantastic humour and courage and tenacity. We had illness and tears and hilarious laughter. I had some moments when I wanted to leave and come home; when I didn't think I could manage the responsibility - but of course, I did - we did. We had Peruvian hospitals and doctors; and we had copious amounts of vomit.

I have comforted so many tearful people and exuded empathy and sympathy from every pore for nearly 3 weeks. Guess what? I'm pretty good at that. If you'd asked me what I thought were my strong points before I left I wouldn't have thought to include that. In fact, I think I might have thought that everyone could do that in the way I can - but I guess not. Perhaps that's why I've had so many problems in the world - I truly haven't realised that not everyone can feel/see what others are feeling. I can. But I also discovered that I was stronger than I realised - I thought I would be overwhelmed by others pain - and I was at times - but actually I could cope with it in the moment. I could comfort and reassure through pain and fear. I could see and read and guess fear. I used my knowledge to guess where others felt frightened and I was right. I have skills I never knew I had. And it may have been exhausting but it was good. I said many times that I didn't mind people crying and being fearful and sad - that I would just be there for them and that I wanted to try and make people feel better; or at least, not alone. I think I managed some of that. I think I'm finding where I need to be.

I'm not sure what that's going to translate into but it's a better feeling than I've had for a long time. What I think I felt to be a flawed aspect of my personality - caring what people thought and how they felt - being aware and frightened of sadness and fear and anger; well, I think I now realise that it's an asset. It's something that not everyone has to the same extent.

I just hope this isn't a flash in the pan. Yet another wild dream of a moment (Yes! I want to be a fighter pilot! - No, I'm kidding; I never wanted that. I'm too much the pacifist for that.)

I think I've also come home realising how much I want to be married and a mother. I've been fighting my mothering instinct for a long time and it's not necessary.
I'm quite frightened now I've written that - and I want to shout 'no! no, I don't! It's a lie!'. But that would be the lie. I run away from making decisions. I haven't seen enough of decision-making around me. I've watched a 10 year wait-and-see scenario and I've allowed that to teach me not to make choices. I don't know how I'm going to make some choices but I'm going to have to try.

Thursday, August 02, 2007

Done and dusted

Last hideous Zoladex injection done today by the lovely Melissa (who always does them so very well). It's supposed to last for 4 weeks so *then* hopefully my hormones will start to reassert themselves and I can stop the hot-flushes and all the accompanying, depressing side-effects will fuck off......
In my head I have a little timeline of 2 months. If it's not getting better in 2 months time I'm going to be pissed off.
Please sort yourself out, body!!

Friday, July 20, 2007

Did she fall or was she pushed?

So, I've been pushed. Given a deadline. The bomb goes off and I'm sent out into the world to fend for myself by December. No more talking. The time for introspection, for figuring out myself is running out.

This is supposed to focus the mind and set a goal to aim for.

So why have I cried hysterically over the last 18 hours? I'm amazed at how I am feeling. Like an abandoned child. Stupid for having forged a relationship that I knew was temporary. People leave - I know this; I'm used to being left behind. So why do it? I hurt now and if I'd kept to myself then I wouldn't. If you don't share yourself, if you don't give people access to your personal world then they can't hurt you.

But I do hurt.

Thursday, July 19, 2007

No air

Sometimes I just feel like I can't breathe. Like there's no room in my lungs to let in air and no strength to even take in that breath.
Every day I sit here in silence surrounded by my equally silent colleagues and want to scream or swear. I don't like to talk to people any more. I won't sit in the staffroom, and if people ask how I am or say hello then I smile and lie and scuttle off as soon as possible. Hibernation-mode. I don't want to share and wouldn't know how to share the way I feel. Mostly I don't want to share. They'd try to be nice. They'd try to understand and they can't understand. I don't want *them* to understand. I want to be left alone. Except I don't. I think. I don't know.
I feel suffocated. And so heavy.

Friday, July 13, 2007


Compression 'garments' really don't go well with hot flushes.
It's currently taking all my self-control - including muttering to myself under my breath - to stop myself from ripping them off before I explode.
Deeply unattractive - just to add to how great I feel about my body, and they itch. Itch, itch, itch.

The following are some things I'm mostly writing down to remind myself. I'm not sure what they are or if they're 'right' - in general, or for me. We'll see.

We are alone in the world
We want meaning, a place, validation
Our identity and reality is defined by our personal beliefs and ideals - we make our own meaning
We cannot depend on others for our validation
We are free to make our own choices
We are personally responsible for the outcomes of those choices - there is no-one else to blame
Choices come with anxiety - fear of failure, fear of death
We are also free to make new and different choices; to reinvent ourselves

We are the architects, builders and planners of our own lives
"we are the music makers, and we are the dreamers of dreams"

In other news - one more Zoladex injection to go!! Then, hopefully within a few months my body will revert to having hormones and stop having endless hot flushes. I could try and calculate how many I've had in the last two years but the numbers might get a bit ridiculous.....
Say, 15 a day for 2 years - how many is that?


That's quite a lot.

Any further questions as to why I am a mixed-up, crazy being??