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.

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...

Cancer's Back Again

Today brought my oncology appointment. Which brought MRI scan results. Which brought the news that I'd feared. The cancer's now in my bones too.. in my shoulder, and in my pelvis.

I don't know what the treatment plan is yet. It could be another six weeks before I find out. That will be over three months from having the bone scan.
They have to decide whether to do nothing. Whether to give me more chemo. Whether to give me bone strengthening drugs. Whether to give me radiotherapy to help with the pain. Or whether to give me a combination of the above.
Meanwhile, I'm left hanging, and wondering what wonderful voyage around my body, the cancer's taking while I'm waiting.

Not the happiest of bunnys, tonight.

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.

New York, New Hair, New Home

Tuesday 24th July 2007 10:44pm

You may notice the date of this entry, and the date I've posted it, doesn't match.
You may also notice that there are several blog entries, with different dates, in this one entry.
There's good reason for this, which will become evident shortly!

The dates of these few posts don't go in the 'usual' blog order. That is, the latest is at the bottom, rather than the top.
I'm not trying to confuse anyone (honestly!). It's just that this is how I've written them.. in classic diary style really, rather than in blog style.

Firstly, I know I haven't written anything here, for ages. And I want to apologise to those who've sent messages, asking if I'm ok, and saying they're worried about me, because I've been away from my blog for so long.
Thank you so much for caring about me :o)

I'm fine at the minute, and pretty happy.
I have had some random side and back pains lately, which I'm going to be having scans for, over the next couple of weeks. So if anyone would like to keep their fingers crossed for me, that the cancer's still 'stable', and isn't doing anything, I'd be extremely grateful.

So, what have I been doing then?
Well, I've been a bit of a busy bee..

Earlier this month, I flew off to New York City (Midtown Manhattan), for 10 days, with my auntie.
The weather was absolutely boiling hot, and humid. I got very sore feet (too much walking on the first day, and me not considering how it could affect my feet (which have always been sensitive, but even more so since two lots of chemo). But we still had a great time!

We shopped alot.. Looked over NYC on the 'Top of the Rock (at the top of the Rockerfeller Centre)..
Did a 'Sex & the City tour, which I loved. I'm a huge fan of the show! We got to sit on Carries apartment stoop, eat cupcakes from Magnolia Bakery, drink Cosmopolitans at 'Scout' (O'Neils, in real life); the bar owned by Steve and Aiden, Visit 'The Pleasure Chest', where the girls shopped for their rabbits.. and see many more locations featured on the show!
We went up the Empire State Building..
Flew to Buffallo, then went to the Canadian side of Niagara Falls, where we sailed up to the falls, in the 'Maid of the Mist' boat..
Went on the Statton Island Ferry, where we waved to Lady Liberty..
Did a couple of bus trips/loops, and popped over to Brooklyn..
Shopped in Bloomingdales, Macys, Bed Bath & Beyond, 'did' 5th Avenue, and went to a huge Sunday street market..
Visited Times Square more times than I can remember.. our hotel (which was lovely!) was only a couple of blocks away.

It was far to hot, in NYC, to be wearing any sort of head-covering, on my now 'baby fuzz' covered head. So I went without.
I had a couple of comments, from the couple of people who had to check my passport, at various times during the trip.
They weren't horrible comments. Just "Oh my, what happened to your hair?!" comments.

Since I've been home, I haven't covered my head with scarves or wigs, either.
I've already gone through the trauma of going 'topless' for the first time, once.. I don't want to have to do it again.
So I wear my baby fuzz with pride. This is me. If you don't like it.. well, quite frankly, I don't care!


We arrived home on Wednesday 18th July.
On Friday 20th, I moved out of my parents house, and into my fabulous, brand new flat!
My lovely brand new flat, which has no internet yet. Hence I'm sitting here now, writing this on my laptop. But will only be able to put it on my blog when I visit my parents again, and borrow their internet.

I started looking for a flat to rent, a couple of months ago.
I found a beautiful little flat, right by the canal. Deposit was paid. Then it rained.. alot.
The flat (and all the places around it) flooded, and became unlivable. So that was that.
Shortly after that, I found another (first floor) flat, with the same letting agents. It's brand new, just been built, never been lived in before.

I'm sitting here, looking out of my fabulous new living room window, over the little park, and at the moon in front of me.

Moving out of my parents house, and into my own place, is something that, a few months ago, I thought I'd never be able to do. So, although getting your own place is always exciting, imagine how good it feels to do it, when you doubted you'd live long enough to be able to do it!

Although all the cancer stuff is constantly on my mind, I'm so happy just now. And these days, I revel in every little bit of happiness that comes my way. Because I never know when it's all going to change.
I hope the scans I'm having over the next week or so, allow me to stay this happy for a while yet.

And the herceptin that my oncologist had decided to stop, has been started again.
I've changed oncologists and hospitals, after losing faith in my previous oncologist, after what seemed to be developing into a catalog of errors.




Wednesday 25th July 2007. 2:07pm

I'm sitting here again, in my fabulous new flat, looking out of my fabulous new window, having just been for a bone scan.
After the bone scan, I had to have two x-rays. One of my shoulder (where hot spots showed up on my last bone scan, about 7 or 8 months ago. But it was decided it was 'nothing to worry about', 7 or 8 months ago. So we'll see what they say this time). And one of my pelvis.
I've been having pain in my pelvic area for a while now, which is why the bone scan was ordered in the first place.

I'm hoping they've x-rayed my pelvis, because of me telling them I was having pain. Rather than being x-rayed because they saw something on the bone scan.
Since this pain started, I've thought it was probably (hopefully) a trapped nerve. It feels like a trapped nerve to me. But what do I know really!
I've always thought bone pain would be a more dull, consistent, achy pain. Rather than the shooting pain I'm getting when I walk, with this. But again, what do I know!

As for my shoulder.. I haven't mentioned any pain to them, regarding my shoulder, because I haven't had any pain. So I can only assume the bone scan showed something up again.
I wont know the results of the bone scan, x-rays, or the liver scan I'm due to have next week, until I see my oncologist, in three weeks time.
What will I do until then?
Most likely turn it over and over in my head.. worry myself sick, cry, convince myself the cancer's now in my bones too, then pull myself together, after repeatedly telling myself it could be nothing, and telling myself if it is something, then I'll have to deal with it. Then the cycle will start all over again. And I'll keep cycling through a whole host of emotions, that I never even realised I could experience, before the cancer came about.. for three weeks.

So now, I'm sitting here, in my fabulous flat, looking out of my fabulous window, all alone, desperately wanting to be able to talk to my online 'pink ladies', through what I now fondly call my 'pink forum'. Because I know they'd understand just how I feel.
They wouldn't tell me it'll be ok, and not to worry. They'd give me a big cyber hug, and hold my hand across the ether, until I get the results.. and always.
But I have no internet.

Oh, and James and I are 'together' again.. for the past couple of months, or so. So we'll just have to see how things go.

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.