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.

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...

More Waiting, More Wondering, More Worrying

At the same time as getting the 'official' results of my liver scan, last week, I also got the results of my latest bone scan.

The bone scan showed hot spots on my pelvis (where I've been having worsening pain for almost two months now), and on my shoulder.
So I'm waiting for an 'urgent' appointment to have an MRI scan, to see if I now also have cancer secondaries in my bones.. which my oncologist feels is likely, due to my history with this wonderful disease.
I'm not sure what the NHS' definition of urgent is. But I was told a week ago, that an urgent appointment would be made.

So I'm back to waiting, wondering, and worrying.
Anyone who's been in a similar situation will understand the how hellish it is, to be waiting for scans and results.
It's on your mind as soon as you wake up in the morning. You might manage to forget about it for a few minutes at a time, throughout the day, while other parts of your life are distracting you. But it's never far away from the fron of your mind. And it's there, niggling at your thoughts, as you're going to sleep at night. Quite often, it even manages to make an appearance in some horrible form, in your dreams.

If the cancer is now in my bones too, it'll be more chemo. Something I'd hoped to be able to avoid, for as long as possible.


I should be picking up my new car (VW Polo) next week. I just need to sell my MGF now.. which I'll miss.
It's nice to be able to drive through the countryside, in the sunshine, with the roof down. But needs must, and all that. And my needs dictate that I must swap my pretty little convertible, for a sensible automatic VW.

Happy End of Chemo!

Well, here we are again!

Since my last blog entry, I'd started to pick myself up a bit, and even begun to 'look forward'.
I'd paid a visit to my GP, to say "Look, I think could do with a bit of help here. I'd like some counselling."
She agreed, and told me there's a waiting list of two to three months. Oh good!

Yesterday, I saw 'the ex', and all the feelings I was trying to hide in the little pocket of my life, where I try not to look, were dragged to the surface again.
So last night, I felt awful again. Like I was back to square one.
I've managed to shake it off a bit today, and don't feel as bad. But I still don't feel great about it all.

A couple of weeks ago, he did me the honour of telling me why he'd "fallen out of love" with me (I had asked him why). And it pretty much boiled down to the fact that he was bored.
Bored of me being boring.
While I haven't been well enough to do much, through chemo, he was bored of staying in with me.
I can't blame him really. I was bored of myself.. Barely capable of dragging myself out of bed every day, never mind keeping anyone else entertained.

I had my last (for now) chemo and herceptin treatment, last Wednesday. That's it now.
It's the first time in almost two years, that I'm having no treatment.
Herceptin wasn't working, so it's been stopped. And just being left to go it alone, is a little bit scary.
I'll be having another liver scan next week, to see what's happening in there now, at the end of chemo.

My liver function tests still aren't 'normal', but they're a hell of alot closer to normal than they were a few months ago.
We're now adopting a "watch and wait" approach.
I'll have blood tests every four weeks, to check my liver function. If the score starts going up again, I'll be scanned to see if the tumours are growing again.

If the tumours start growing again, the only option available to me at the minute, is more chemo.
If the tumours start growing again soon, I really don't know if I could face more chemo. I suppose I'll jump off that bridge when I get to it.

After a monumental cock-up by my oncologist, last week (he wanted to start me on a whole new course of chemo, when I didn't actually need it. He hadn't read my notes properly. This could have had serious health consequences for me), I'm waiting to be referred to a different oncologist, at a specialist cancer hospital.
I have no faith in my oncologist anymore, and I really need to be able to have faith in the person who's supposed to be trying to save my life.

Also since my last blog entry (and on the day my oncologist made his cock-up, incidentally), I've had a 31st birthday.
It passed by relatively quietly.. with some birthday cake and a drop or two of champagne, with my family.

So, I've managed a 30th birthday and a 31st birthday. Both of which I doubted I'd ever see, when I was first diagnosed with cancer, almost two years ago.
I hear people complaining, at every birthday, that they're getting older. I want to shake them, and tell them to be grateful they are getting older!

For my birthday, I've had a set of chrome roll hoops on my car..
















I've also had a Native American drone flute (it arrived today!), which sounds beautiful. Even the cat seems to like it.

The day after my birthday, I had chemo!

So now, I'm still feeling a bit grotty from chemo, and have some big painful ulcers in my mouth.
The grottiness should wear off soon, and I'm desperately hoping I'll be able to start looking forward again.