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?