I hate CT scans

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

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

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


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

The way we love

I've been having a bit of a funny week.
Earlier in the week I felt like I was almost having panic attacks. I was really tired and wanted to have a nap but I could hear my pulse pounding in my ears and I felt like I had indigestion almost, but I didn't really. So I couldn't sleep, even after I'd had one and a half Lorazepam. They're supposed to be muscle relaxants but I really didn't feel like I was 'un-doing'.
Then I've been oddly angry and weepy today - I went strangely pathetic when I discovered that Dear Other did not love the bedside cabinets I'd found and fallen for and thought would be just perfect, and thought he would think were just perfect......but he didn't. I'm over it; but I felt so lost - perhaps because we so nearly always concur about things, I'm not very practised at not agreeing. Not that we were arguing about it - I think it was more feeling that we were 'out of tune' with each other and I rely on him a great deal and am very used to being 'in tune' with him that it was an odd experience to not be. If you see what I mean. But, it's a bedside cabinet - it's not going to be on display to the whole world, it's not a big deal (and I do mean that). So I have the new one that I loved and he has the old one that I secretly think he loves since he's had it since the year dot. So, that's OK.

On Friday it's going to be my brother's birthday. I had hoped to go over to the States to be there for it, but I can't because I have to go and have my Pamidronate drip and Zoldex injection. Not a very nice substitute. I've send his present and card and I'll try and get him on the phone (although that's never the easiest thing!) I've discovered I'm feeling pretty nervous about his birthday - he'll be 27. Age 27 was when I got cancer and I think I'm somehow scared that something bad will happen to him - and I don't want it to (obviously). I'd really love 27 to be the year that life opens up for him, that things go right for him; that he finds his place, his niche, his perfect job; that he stops feeling so sad and depressed. If something happens to him, if he gets sick - I'll feel guilty - like I've caused it by being afraid of it. Fairly irrational I think you'll agree. I guess I'm just saying I love my little brother and I would rather the hideous weight of the world fell on me instead of him......

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.

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.

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.

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.

UPDATED

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

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?

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.

we

::sigh::
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
BUT
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?

10,950

That's quite a lot.

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

Haven't we met here before?

It's amazing what a stinking cold and a hideous migraine will do to you. In my case it turned me into a gibbering wreck who, guess what?, was having trouble reminding herself that feeling sick and in pain did not mean that she still has cancer. Well, it was more like flashbacks I think; I just felt like I had slipped back 2 years. Because 2 years? That's when I was waiting....waiting, waiting, waiting. This time 2 years ago I was waiting for the results of my biopsy and ultrasound. And it really has unsettled me again - last year I thought that it was just because it was the first time around; too close and too raw but actually I've felt pretty terrified and unsettled this time around too. Blah blah - only 2 years; blah blah - don't be hard on yourself; blah blah - it takes time; blah blah - everyone's different. Etc, etc, etc. I know, I've heard it all.
And I keep telling myself that progress has been made - that this time a year ago I was in floods of tears every day - great, hulking, ugly wailing fits; not those genteel sobs of films and TV programmes. But now I feel like the sadness has no outlet; like it's solidifying in me and solidifying me into the snow-queen again. She who can feel nothing, know nothing, is nothing.
Ah me, ah my, the self-pity begins again.....

Enough

What to say today, what to say.....
I had some very sweet comments, which I wasn't fishing for, and I certainly wasn't criticising the few of you who do stop by and comment. But there are a lot of *other* people who, I can see from my stats, don't stop and don't comment.
But anyway, enough of that....

In fact, I have nothing to say today - I am too sad to hear about Laurie and the whole issue with my guides has blown up again...

Plus, it's my 3 monthly consultant check-up next week and I'm anxious. The phantom discomfort in my right leg is preying on my mind.

Enough. Enough. Enough.

Stayin' alive!

Apparently, 'if I knew who walked beside me, fear would be impossible' - sadly this just sounds vaguely threatening to me - as if I were being stalked....
But I would debate this - I think fear is one of *the* most human traits. It's part of our animal nature and I don't think it really disappears because we have a belief in a god or other spiritual being. It's an instinct - and I don't think they can be governed by the logical mind.
Am I frightened? Yes, of course I am - but what does that mean? Well, what am I frightened of? The cancer coming back; dying; not getting to do all things I still want to do; my family and friends being sad; pain; having to go through all that treatment again. Why is all this frightening? Well, it seems to me that it is proving just how strong my instinct to stay alive is. But it is instinct - not logic.
I spent far too long today grokking out on Laurie's blog. I just got sucked on in there and was reminded so many times of what I experienced. It's very bad - I shouldn't do it because it confuses me. I get muddled about where I end and where other people's stories begin. A very strange trait I feel.

This is all very dull - I feel it may be time to stop the waffle.
I'd like to say it'll get more interesting over the weekend but I fear it won't (Well, it will for me because I'm going to meet my Peru team but it will mean short and sweet posts late on Friday, early am on Sat and curled up in a comatose heap late on Sunday - never fear! I'm not letting NaBloPoMo get the better of me!!!)

Fear

In the summer I agreed to go as a leader on a trip to Peru - I was scared stiff by the idea but I thought that I needed to do something that scared me. Something daring, something to prove I could do things, to prove that cancer hadn't got the better of me.
Now I am starting to wish I hadn't agreed.
I am not getting less scared, I am getting more scared. I'm scared that something terrible will happen, that someone will get sick, that I'll get sick, that we'll all have travellers guts, that I'll screw it up and the consequences will be bad.
I am scared stiff and I just want to pull out.

I'm also scared that I've tempted fate - that cancer will rear its ugly head again because it knows that it'll screw up everything......

I'm scared: as ever
Because I'm scared of everything.

Panic

Scared this morning - I've been feeling discomfort in the left chest/breast - I think it's the portocath but I felt it this morning and it felt sort of hard. I didn't investigate too closely - I'm a scaredy-cat.

I just keep reminding myself that the Oncologist said that the chemotherapy would be stopping the cancer from spreading and growing anywhere else, as well as shrinking the existing tumor. And she's a big shot in her world - so she knows what she's talking about.
I wish the Surgeon had decided to take the portocath out though - I hate having foreign objects in my body - even if it did make the chemotherapy easier.

I don't know whether to panic and call Trish. I hate this. I so cannot cope with the fear and uncertainty, I mean, the rest of it is pretty shit too - but I really, really go into panic/worry mode when I'm not in control (and that includes knowledge).

I think it's probably being on my own in the flat for only the second time since February - nothing to take my mind off things - too much time to brood. Well, my dad gets back tonight on his way to the airport and then I'll be heading to Northampton tomorrow and off to see friends in Leeds on Thursday.

::tears::

I feel like I'll never stop crying.