God

I received a message today, saying that I don't seem to say much about god.
That's because I never have, don't, and never will believe in god.
I'm pagan/spiritual/agnostic. I can't, and have no desire to label myself any further than that.

The same person then travelled back in by blog, to last August; when I'd had a bit of good news about my liver.. there was no progression. This is apparently thanks to god.
I'm wondering if this person has read about any of the shit I've been through since last August? Brain tumour, brain surgery, months of not being able to walk or see properly, whole brain radiation, progression in my liver, jaundice, feeling too ill to even leave the house now, wishing I was dead?
If the good things are thanks to god, all this awful crap must be thanks to god too. Wow, god must really love me, to put me through hell.
I'm sorry if anyone takes offemce to this, but it's my blog, and I can write whatever I want to write.

None of this is meant to be taken personally by anyone. And while I DO appreciate people praying for me, to whatever force they choose to pray to, I do not appreciate being told that I should thank god for the good days.
I don't appreciate having god thrust upon me. I'd never do that to you, with my beliefs.


Anyway, onto..
Liver, Yellowness, and Hospitals

I saw my onc last week.
The jaundice is being caused my tumours pressing on, and blocking my bile ducts.
He decided to stop the chemo, while we attempt to drain the bile. While my bile ducts are blocked, there's a high risk of infection because of all the gunk trapped in there.
This risk is increased because chemo is surpressing my immune system. So chemo has been stopped for the time being.

On Wednesday, I had a stent put in my bile duct.
This was one of the most horrendous things I've ever experienced.
I was supposed to be under heavy sedation, but didn't feel like I'd been sedated at all. So was all too aware of every god-awful minute of the hour it took.
It literally felt like I was having my stomach ripped out.

There's a chance I'll have to do it all again, to put another stent in the other duct. I've no idea how I'd face that.
Nothing seems to have changed so far anyway. I'm still yellow, itchy, and feel like crap.
I'm so angry with myslef, for taking the decision to try and get on the Tykerb trial, in December.
Chances are, if I hadn't waited for that (which I didn't get onto anyway), and had started the chemo straight away, I wouldn't be in this position now.

Well..

I know it's been a while since I've written. And I apologise to those who've shown concern for where and how I am, and I haven't responded too.
I just haven't been well enough to spend time at the computer, let alone find the energy to write here.

After being woken in the middle of the night, a couple of weeks ago, with awful pains in my side, yellow eyes, and feeling particularly ill, I found out that my liver had begun to fail, and wasn't functioning well enough to take part in the Tykerb/lapatinib trial I'd been pinning my hopes on.

An appointment was promptly made with my oncologist for the following day, who started me on the chemo (Xeloda/capecitabine) that I could have started six weeks previously, had I not been waiting to get on the trial.
This chemo is in tablet form.. twice a day for two weeks, followed by a weeks 'rest'.
The Xeloda has given me stomach cramps, and a dodgy tum, for two weeks so far (and still counting). It's kept me up half the night, aswell as plaguing me during the day.

I was also sent for an ultrasound liver scan. The doctor doing the scan decided that the cancer in my liver hadn't changed much since the previous scan, before christmas. But that my bile duct was being obstructed by 'something', as yet unknown, hence the jaundice.
Tomorrow, I'm to have an MRI scan of my liver, to try and establish what's going on, why my bile ducts blocked, and if a liver stent might help alleviate the jaundice symptoms.

I've never known much about jaundice. I just thought it made you yellow.
And yes, I'm yellow.. my skin, my eyes. Particularly my bald head.
What I didn't know is that it makes you feel so ill. Sick, tired, upset stomach, itchy, and just generally horrible.
I'm itching like a crazed woman. All my skin itches constantly. It wakes me up in the night. I'm itching all day. I have scratch marks all over me, made by my finger nails from the constant scratching.
I read somewhere that the itching sometimes drives people to suicide, and I can well believe it.
My onc prescribed colestyramine to try to help with the itching, but I'm not convinced it's working.

So, this is why I haven't been here. I haven't been anywhere. I've felt too ill to go anywhere. Apart from to my parents. I've now moved back to my parents house, because I haven't felt well enough to be by myself, or take care of myself properly.
I'd love to be able to go somewhere.. out for lunch, or even just out in the car (with someone else driving, obviously. Seeing as I'm not alllowed to do that anymore). But I can't even sit in the car without feeling horribly ill and exhausted. Never mind get out of it, at the other end of a journey.
I hate the thought that I might never be well enough to go and visit my friends at their homes, again.

I suppose I hate feeling that I have no 'hope', or future left. I feel that I've really had enough now, and I just want it all to be over.
The future always excited me. I loved planning things, and doing things.. holidays, what I was going to do for work, etc. I loved my job, before I had to give it up for this cancer crap. I'd always dreamed I'd have my own little witchy shop one day.
So many things I wanted to do, and places I wanted to go. I've never even been to the south coast of the UK.. always wanted to.
I wanted to go to Edinburgh again, and North Wales.
Now I feel that's all gone. I have no future to plan for, or get excited about, anymore.

It's 2008

So, christmas has gone, and the new year's here.
Happy new year? To be honest, I'm a bit sceptical about that one!

I wish I'd have appreciated those carefree christmasses more.
Those christmasses where I could laugh, joke, eat, drink, with my family and friends, without any more pressing worries than going back to work next week.

Because, you see, no matter how much I told myself and other people, that I was going to enjoy the time with my family, because this will probably be my last christmas. No matter how much I didn't want to think about how cancer's ruling my life, I did think about it.
Every minute of every day, I thought about the fact that I probably wont be here with them, next christmas.

I've been taking a cocktail of painkillers and anti-sickness medication, just to help me face christmas dinner (which I could hardly eat any of).
Constant nausea and pain, don't a merry christmas make.

If anyone out there is thinking "What a waste. There are people far worse off than you. You should be grateful you have such great family and friends. And should have just forgotten about cancer for a while, and enjoyed christmas." I challenge you to live life in my shoes, and see if you feel any differently to how I feel.

Last year, my doctor told me I'd most likely die next year (he actually said six to nine months. Which is now four to seven months).
Next year is now this year. And that's frighteningly close.

I've been in my flat for almost six months now. That time's just flown by. It's no time at all.
Six months is nothing. It goes far too quickly.

I've been with my other half for almost two years. We met when I'd just finished my first course of chemo. That was before my cancer became 'terminal'.
I had hope for the future. We had hope for the future.
Now, two years seems like no time at all. It's gone far too quickly. I want a lifetime with him.. my lifetime and his lifetime. I'm furious with cancer, for cutting this short.
Because even while I'm still alive, it's being cut short.
I'm tired alot. I have no energy. I feel ill alot of the time now.
We can't do the things we should be doing.. things I want us to be doing. It all just seems so unfair.

When I look at him sometimes, I can see in his eyes, what this is doing to him, and it breaks my heart. I know he tries to hide it, just like I try to hide it. But it's there.
I can hardly bring myself to look in his eyes now.

I look at my family, when it's mentioned. And while they seem more willing to listen, when it's mentioned now, I can see how broken they look.

And I think of all the other people, in similar and worse situations. And I wonder how they deal with this happy new year.



It's 2008, Part Deux

Having just read Minerva's blog.. a blog I visit regularly.. I came across a link to Jenny O's blog.
I found this post, which makes me feel almost ashamed of how I feel..

"My aunt Sylvia died this morning. She told her (grown) kids to go to
school, asked for a drink of water, and took her last breath. She had end-stage
pancreatic cancer and multiple myeloma, and she was at home, in a hospital bed
in her living room.

We lived our lives at a great distance. Sylvia lived in Texas (San Antonio,
Houston, Kerrville), ran a balloon delivery business, married a few men (not at
the same time), and loved fiercely. She was the strongest and most indomitable
person I ever knew. The way she lived with cancer taught me how to do it: You
live. Just keep living. Keep doing things you want to do. If your bones are
brittle, go to a water park and ride all the slides, and then take meds and
sleep all the next day. If people you love are there, spend every ounce of your
energy laughing with them, and then take meds and sleep all the next day. Don't
be "sick" with cancer. It's an annoyance. It thinks it's in charge, so let it
think so, but quietly go about your own business and don't let it stop
you.

Until it's too strong. And then, recognize that you're tired, and lie back
and marvel at the fresh, clean taste of cold water, and listen to songs that
have always moved you, and wake up a few times a day to smile at the faces of
the loving ones who surround you. Go home, and have your dog lie on the bed with
you, and open the blinds each day to watch your own neighborhood and your own
yard. Sleep, while your heart keeps beating and beating, while your nails turn
dark and then pink again, while your breathing gets ragged and then smooth
again.And then, one morning, speak softly to your children, and
just...Stop."

Happy Flamin' Christmas

As you'll know from my previous post, I had an echo heart scan, on Monday.
Today, I was told that the images they got weren't clear enough to work out my LVEF (left ventricula ejection fraction). And without my LVEF score, the drug company who manufacture Tykerb/lapatinib (GlaxoSmithKline), wont accept me onto the trial.
The plan was to start treatment today. It seems things never go according to plan.

I now have to wait for another echo (with contrast, this time), before I can start any treatment.
They wont do a muga scan, because it isn;t approved for that hospital. And if it's going to be done, it has to be done at the hospital where the trial's running. How stupid!
I could easily go get one done somewhere else. But no.. let's make life even more difficult for you, because that's just what you need!
How long will I be waiting?
How long's a piece of string?
It's christmas, isn't it. So I can't imagine it's going to be soon.

And while all this waiting's going on, I feel sick most of the time, can't eat much at all (I don't know if this is side-effects of the wbr - though I'm pretty sure the nausea side-effects should have passed by now - or if it's down to the cancer. It started quickly, and it seems to be worsening quickly), have lost half a stone in 2 weeks, and the pain in my liver area's getting worse.
It's all pretty damn scary, I can tell you.

Meanwhile, amidst the waiting, while I'm not having any treatment, the cancer appears to be having it's very own christmas party, in my body.
Speaking to a rushed and flustered oncologist today, who virtually ran into the consulting room, threw results at me, and ran out again (after waiting almost 3 hours, of course), it felt like a series of bombs going off, in my little world..

"You can't start the trial.. or any treatment, for that matter.. because the photos we tried to get of your heart, aren't pretty enough" ... *BOOM!*

"There's further disease progression in your bones" ... *BOOM!*

"You now also have a 1.7cm tumour in your lung" (previous to this, my lungs have been 'clear') ... *BOOM!*

"The biggest tumour in your liver, that was believed, only a couple of weeks ago, to be 3cm, measures 6cm on the CT scan" ... *BOOOOM!*


If anyone would like to throw any more shit at me, this festive season, now is the time!


So I have the whole collection now. Breast cancer that's spread to my bones, liver, lungs, and brain.
It's becoming increasingly difficult to remain hopefull. This cancer's relentless. Things aren't looking great.

I'll Be Glowing in the Dark Soon

The whole brain radiation ended two weeks ago, and passed quite uneventfully.
Since then, however, my hair's fallen out (we shaved the remainder off, a couple of days ago. I looked like the stereotypical cancer patient, with wispy, moth-eaten hair. And I was leaving a trail of hair everywhere), and I've been very tired.. sleeping for 10-12 hours per night, and falling asleep in the day, too. I'm hoping that's a side-effects of the WBR, rather than an effect of the cancer.

Tomorrow, I'll be having the last of four sessions of radiotherapy to my pelvis, to hopefully help with bone pain.

It's been a very busy four weeks, with having to visit hospital almost every day. And some days, having to flit between Sheffield and Nottingham hospitals.
It feels very much like all my life is about now, is cancer and hospitals. And I've been doing some serious soul-searching about it all, recently.

Yesterday, I had a bone scan (more radiation.. I'll be glowing soon!) and CT scan, at Nottingham City hospital. And on Monday, I'll be having a heart scan.
All these are to decide whether I'm suitable for the Tykerb/lapatinib trial.
If I am suitable, and I'm accepted onto the trial, I should be starting treatment next Thursday.. just in time for christmas!
Talking of which, this is the third christmas in a row, I've been bald. Still, I'd rather be bald and alive, than be dead with beautiful hair!

I hope this chemo wont make me ill for christmas.
I'm all too aware that this could well be my last christmas, and I don't want to spend it being ill, in bed.

The Hardest Part of this, is Leaving You

Not alot to report today..

No real side-effects from the whole brain radiotherapy yet, apart from my head feeling a bit more 'fuzzy' again, and being a bit more tired than usual.. Probably a combination of the radiotherapy, and travelling to hospital and back, every day.
I'm four treatments in, with another five to go, next week. At least I get the weekend off!

So I'm just going to leave you with a Youtube link, to the My Chemical Romance song, 'Cancer'.
I'm not really a My Chemical Romance fan, but this song says some of what I've felt for a while, and I kind of like it..
My Chemical Romance - 'Cancer'

Liver Scan Results

I arrived at my radiotherapy appointment, to be told my onc wanted to see me first. So I knew something was up.

Half an hour in the onc's office, and I now know there's 'disease progression' in my liver.
A 3cm tumour, and a cluster of smaller tumours, in a different area to before, which isn;t the greatest news ever.

My onc's already spoken to the Dr running the Tykerb/lapatinib trial at Nottingham, who's going to send for me, for scans, hopefully before christmas.
If I'm accepted onto the trial, it'll start just after christmas. From the sounds of it, it's a randomised trial, so I may or may not get lapatinib. But I will get capecitabine, regardless.
My onc said ideally, he'd have started me on capecitabine, the week after I finish rads, but that would make me ineligible for the trial. But he also strongly feels I should have Tykerb, and waiting a few more weeks shouldn't make much difference.

I have to come off the steroids before I can be considered for the Tykerb trial. I'm only on 2mg per day at the minute, and I'll be 'weaning' myself off them, over the next 10 days. 2mg for the next 2 days.. 1mg for 4 days, and 0.5mg for 4 days.. then stop.
If I start getting headaches, or other side-effects, I have to start taking them again.

Then we had the "There's only so many more things we can try" talk. And that there comes a time when treatment will have to end. Which I obviously knew. But hearing it come out of my doctors mouth makes it seem more 'real', somehow.
But he also stressed that capecitabine had wildy varying results, with different people.. from not working at all, to keeping mets under control for a few years.

Again, I'm SO glad I changed oncs.
It's taken just two days to get liver scan results. And in that time, my onc's done all he can to get me the treatment he feels I need, at another hospital.
Unfortunately, that would probably mean that my main care would be overseen by a different onc (Dr Steve Chan), at Nottingham hospital. But my onc also said I (or my family) can phone him anytime, if I needed anything at all, or if I wasn't happy with anything. And I can go back under his care whenever I want.

I'm feeling an odd mix of emotions at the minute.
On one hand, I'm feeling very deflated and quite hopeless.. Because of the scan results.. Because I have to wait and see if I can get Tykerb.. Because I just have to wait, and I want to get on with things asap.
But 'glad' (if that's the right word) my onc's being so proactive, and that he really does seem to care.
He almost made me cry today, saying he doesn't care who I want to treat me.. he'll refer me anywhere. He just cares about me, and that I'm getting the right treatment.

He said out of all the people, he wouldn't have expected it to be me sitting there, at 31 years old, in the situation I'm in.
And he onc genuinley looked sad. Like a friend would, rather than a doctor.

Mostly, to be honest, I'm feeling deflated now.
My head's feeling more fuzzy, which is probably a mix of radiotherapy effects, and everything else that's whizzing around in there.