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.
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...
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.