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.

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!