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.

Liver Scan & Radiotherapy

Yesterday, I had a liver scan.
The last one I had was in August, and showed that the cancer was being kept at bay.
However, there were "findings" on yesterdays scan. The biggest of which appeared to be 2.5cm. So I'm assuming there were more.

The person who did the scan wouldn't be any more specific, and said they'd have to compare this scan, with the previous one, before I'd get the official results (which should be next Tuesday, when I see the onc). But it would seem that my liver mets are growing again. And so, it looks like I'll be having chemo for christmas, for the third year in a row.
I was really hoping not to be this christmas. I'm all too aware it could well be my last christmas, and I'd hoped to be able to enjoy it as best I could, with my family and friends, without chemo side-effects.
I could put the treatment off until after christmas, but that would just give the cancer more time to run riot, and I don't want to die yet.

I'm trying to find out if I'll be able to get on the Tykerb/Tyverb/Lapatinib trial.
This drug is as yet unlicensed in the UK, and is only available through trials at certain hospitals.
The trial isn't running at my hospital (Weston Park), but it is at some other hospitals, and my onc says he'll look into it for me.. I hope he does, and quickly.


Today, I went for my 'whole brain radiation' planning session.
I didn't expect treament to start today, but it did. So I've had the first of nine radiotherapy sessions to my brain. I'll get a zapping every day (but not at the weekend), and it'll finish next Friday.
I'll probably be starting chemo the week after that.

There's a whole list of possible side-effects, that come with whole brain radiotherapy, including confusion, tiredness, trouble sleeping, vision problems, dizziness, disorientation, confusion (what? I already said that? It's starting already!!), sickness, some syndrome that can kick in about 6 weeks afterwards (just in time for christmas!) and makes you sleep all the time, and various other lovely sounding things.
I'll also most likely be bald again, and my hair may or may not grow back, after a few months.
Side-effects can start anytime between now, and weeks after radiotherapy's ended. And can last for months.
I'm hoping I'll escape with as few effects as possible, and I'm really hoping I'll stay well enough to stay at home.. preferably on my own. I'm not into the whole being babysat thing. I appreciate that there are people who want to help, but I also want to keep as much independence as possible.

I must give praise to my hospital, for todays performance..
The letter said that the planning session could take a "considerable amount of time".
Now then, when a hospital actually tells you it could to take a long time, you expect to be there all day.
But from my appointment time, to getting out of the hospital, we were there just two hours. And that included treatment time.

I saw a really nice lady Scottish doctor twice, and a nurse. Both explained things really well, gave me advice on side-effects.
As I mentioned earlier, rather than just having the chemo they're suggesting (capecitabine), I want to try and get on the Tykerb trial. The doctor I saw said she'll ask my onc to look into this for me. So I'm hoping he might've started to look into it, byt the time I see him next week.

I didn't see my oncologist, but he was in the department. And without being asked, he checked to see if yesterdays liver scan results had come through yet.. They hadn't.
By the time I left, I had all my appointment times for the radiotherapy sessions, the appointment to see my onc next week. And plans will be put in place for starting chemo the week after radiotherapy ends, should I need it for my liver.. which I expect I will.

I can't help wondering what would be happening now, if I was still at my old hospital. I can't imagine things would be happening as quickly as they are now.
In fact, I'm not sure I'd even still be here.

I'm tired today. I've had to be up early for the past two days, and haven't had much sleep, so I think it's going to be an early night tonight, seeing as I'm at hospital again tomorrow.. and the day after, and the day after, and the day after, and...

Monday

Well, this morning was the morning after the first night I've spent alone, in three weeks. And I survived!
It was really nice.. I went to bed later than I have been doing, slept really well, and woke up feeling.. dare I say it.. almost fresh, and relatively 'normal'.

I got up, made a cup of tea, and ate my breakfast, without anyone watching me, or asking if I was ok.
I've washed my dishes without anyone saying "You sit down, I'll do those!" (I'm not ungrateful.. far from it. I know how lucky I am, to have a family like mine.. it's just nice not to be watched like an invalid).
I leisurely checked my emails and forums, whilst having breakfast, without having to worry about getting ready to spend the day at someone elses house.

I spent the whole day in my own home, just pottering about, doing normal mundane things. And it's so nice to be able to do those normal mundane things.
You just can't appreciate how good it is, until you've been in the position of not being able to do them.

Tomorrow marks three weeks since the op.

This time three weeks ago, I was wishing I was dead. For the first time in my life, I truely didn't want to be here anymore. I just couldn't bear the thought of what was happening to me, anymore.

But I am still here, and now I want to be. I want to be able to live whatever life I have left, to the best of my ability.

I know it's often going to be hard. I know there are going to be some desperately dark days. But I also hope there will be some wonderfully happy days.

Sunday Evening

I'm happy to say that, compared to the last few weekends, this one's been a bit more 'normal'.

James took me to Tesco, yesterday. Then over to Lisa's last night. It was really nice to be able to visit friends, rather than the other way around.
Lisa said I seem much better than when she last saw me, about a week and a half ago.
In fact, James said I seem alot better than a week ago too. I suppose people who don't see me every day, can see more of a difference.

My balance, vision, etc is still far worse than it was before the op. But at least I can walk around now, without worrying too much about falling over things and people, which is a vast improvement on a couple of weeks ago.

Today, we ventured to PC world, for a new mouse for my new laptop. And then I cooked (an easy!) dinner.
Yesterday I cleaned the bathroom, mopped the kitchen floor, and hoovered the flat.
Ooh, I also had a couple of glasses of wine last night, with our pizza!

I had to take painkillers in the night, because the bones in my legs were hurting and keeping me awake, which I guess is from the zometa.

I haven't slept too well over the weekend. Been waking up at around 4am, and lying awake, thinking about 'memory boxes'.. the kind of things parents make for their children, when they know they're not going to be around for their future.
I don't have children, but I've been thinking it might be a good thing to do for my parents, and a couple of close friends.
So I've been lying awake, thinking about what I could write in letters, and what else I could put in these boxes.
It's a strange thought really.. it's like thinking of what to give as christmas gifts. But then I remember that I wont be there to see people open these boxes.

I'm at my parents at the minute, after James dropped me off on his way back home. But I'm going home later on, and I'll be staying on my own tonight, for the first time in three weeks!

All this mundane everyday stuff, that you never appreciate until you can't do it. I love mundane everyday stuff!

My Life's All About Hospitals and Drugs

Today I'm posting from my shiny new Dell laptop!
It's the first time I've been able to get my head around using it properly.
I have to say, it's rather nice. It has a bigger, much clearer screen than my old laptop, so that's ideal now.
I'm also happy to report that I'm almost back to my normal typing speed (which has never been wonderful, to be honest!).

Yesterday was a very long day at the hospital.
I had my regular Herceptin treatment, along with my first Zometa infusion.
Appointment was 1:30pm, and I'd finally got a cannula in (after only 3 attempts. Not bad for me) at 4pm, and didn't get home until just gone 8.

I got home to find my appointment for my whole brain radiation planning session, on 20th November, which says it could take "a considerable length of time". Oh goody!
I don't really know what to expect for that. They also invited me to take a 'full tour of the radiotherapy department', next week, but I think I'll pass on that one!

Have to say, I felt pretty rough earlier today. I don't know if it was zometa side-effects, or just everything else. But I feel a bit brighter this afternoon (well enough to use my new laptop, anyway!).
I must admit I was a bit naughty today though. I'm only on 2mg steroids (dexamethasone) per day now, but I hate them. My face is getting more puffy by the day (if I press my forehead, it stays squidged in, because of the fluid), they make me bloaty, make my brain even more fuzzy, and my mouth taste horrible. So I decided I'd try to go without, this morning.
Didn't last long though. After I'd felt rough and very spaced out for a while, I relented, through fear I might have a funny turn if I didn't take them.

Yesterdays Oncology Appointment

I saw my oncologist yesterday, who said I'll still be having herceptin as planned, this Thursday, along with zometa (a drug to help with the bone mets).
The pathology report on the brain tumour shows that it's consistent with secondaries, which is what I expected. They say they have no reason to think otherwise, so it'll be treated as such.

Whole brain radiation should start in 1-2 weeks, every day for 2 weeks, so there's something else to look forward to! I'll loose my hair again, and it may or may not grow back.

I was hoping to be able to stop taking the steroids for a while, until WBR started, but they want to keep me on them until afterwards. They make me hungry all the time, make my mouth feel horrible, and are making my face swell. I really don't like taking them at all.

I also have to have a liver scan asap, so we can see what's happening there. Then they can decide if I have to start more chemo straight away, or whether it can wait a while.

I had a shower this morning, rather than a bath, for the first time since the op.
I haven't been stable enough to stand in the shower up til now, so it was really nice, and I feel like I've acheived something today.

My neck's sore and a bit swollen still, but not overly so. They did say I'd have a very stiff neck, because they'd had to pull apart the muscles, to get where they needed to be. But it really hasn't been bad at all. I'm quite surprised (but glad) at how little pain I've had from it, so far.

Here are a couple of photos, for your viewing pleasure!

All stapled up, a few days after surgery

On Saturday, after having the staples removed on Friday

Brief Update

It'll be two weeks tomorrow since I had someone poking around in my brain. It's still a very odd thought, and one I don't think I've quite got the grasp of yet. Everything happened so quickly, I haven't had time to take in what's happened.

It's almost a year since I found out the cancer had spread beyond where it originated, and to my liver.
22nd November 2006, was the day I found out I had 'incurable' metastatic cancer. I didn't expect then, that less than a year later, it would be in my brain and my bones too. I hoped I'd have more time.

I've since learned that according to those "damned lies and statistics" that I should be dead by now. After a diagnosis of liver mets, I should have had 6-12 months to live.
I'm not sure how I feel about knowing all these time frames now. According to the numbers, the liver mets are still more likely to get to me, before the brain mets do.

I've also learned in the past couple of weeks, that of the people who're taking herceptin for breast cancer, around 50% will go on to develop brain mets. That's a pretty high number.

Any diagnosis of cancer is scary.
Diagnosis od secondary, incurable cancer is incredibly scary. My world came crashing down when I found out about the liver secondaries.
It didn't seem quite so bad when I found out about the bone secondaries. But I knew that didn't really change my prognosis.
But finding out it's in my brain seems to have taken it to a whole knew incomprehensible level.

I have no idea how to feel about it. No idea what to say to other people about it. No idea how to make my family and friends feel any better about it now.
Chances are that in a years time, my parents will have no daughter, and my friends will be a friend down.

I was very upset about all this, a couple of weeks ago. But now it's like my foggy brain isn't really acknowledging it. I don't feel like I'm feeling it. Which is probably not being helped by not being able to think straight, or concentrate. And not helped by this permanently fuzzy feeling in my head, which is making my life seem less real, somehow. I don't really feel alive anymore.

Tomorrow, I have my oncology appointment, where I'll probably find out when the whole brain radiation should start, and how many sessions I should be having.
There's something to look forward to. Nothing like a bit of brain frying to knock you off your feet again!
I'll lose my hair again, and it may or may not grow back. I know it often doesn't.

I'm still having trouble with my vision, balance, hearing, etc. So typing's a slow process. But I'm grateful that I can at least see well enough to look at screen now.

I still feel much worse than before I had surgery. But still hoping it'll get better, and that I can have some decent quality of life while I'm still here.

And now in my Brain

Just over two weeks ago, I was admitted to hospital for brain scans, after having headaches, and then a few other symptoms.
Last Tuesday, I had brain surgery, to remove a 2cm tumour from my cerebellum.

It's been a very scary couple of weeks, and I can only now just see well enough to use the computer for very short amounts of time.
My balance is all wrong (couldn't walk for a few days after surgery), my vision's wrong, I can't hear properly, and can't think straight, or concentrate.

This time last week, I honestly didn't care if I died. In fact, I hoped for it.
But I didn't die. I'm still here. And while I really don't feel like me at the minute, things seem to be slowly improving.

The "damned lies and statistics" give me around 6-9 months to live now.
Six months will take me to my birthday. I'm hoping for more, but I'm not being unrealistic. I know this cancer's on the war path. I know it'll get me. But not just yet, I hope.