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...