Wibbly Pigs!

I seem to have neglected to write anything, for the whole of May, and half of June!
I'm still here anyway, and have added two baby guinea pigs to the family..





As far as health stuff goes, I saw my onc's registrar yesterday, after having a liver scan a couple of weeks ago.

The liver scan showed no change from January. Which in turn, showed no change from the previous one (in November 2007, I think). I find this quite hard to believe, considering how poorly I was with my liver, from January to April. But that's what they say, so..
Apparently there are lots of clusters of small tumours scattered throughout the right lobe of my liver.

The last time I saw my onc, 3 weeks ago, and the time before that, my liver function was getting worse. It seems to have improved slightly this time (even though the numbers are still much higher than they should be), which is as good news as I could hope for now.

I was at the lymphoedema clinic today (which is located in a hospice, so I always try to not look in the wards), to review the compression glove they gave me last week. And to get some trendy compression socks, for my swollen feet and ankles.
These things always come in 'American tan'. Does anyone actually have that colour skin?!

I'm off on hols, to Jersey, a week on Sunday, so just keeping my fingers crossed that I stay relatively well for that!

Myself and t'other half are going to Silverstone International this weekend, to an MG 'do', so fingers crossed for nice weather. I haven't figured out how to keep dry yet, when I'm in the wheelchair! Hoping to see some familiar faces there.

I had my zometa (bone strengthening drug) infusion yesterday, which always wipes me out for a couple of days. So I think I might go have a kip!

Normality & Children

I keep having dreams that things are 'normal'. That things are as they were before this cancer crap. In my dreams, I have long hair again. I go out. I go to work.

This morning, I woke up thinking it was time to get up for work. I haven't needed to get up for work in over a year. Then the tears came.

Then I watched a short piece on TV, about the childrens cancer department, at Great Ormond Street Hospital.
It was only on for about fifteen minutes, but it really choked me up.

These children have had no life, and yet some were facing death within a couple of weeks.
At least I've had a life. Albeit not as long as I'd hoped.
I had a wonderful childhood. My home-life was never turbulent (well ok, maybe it had it's moments when I was in my teens!), my parents are still together, I always had everything I needed, and most things I wanted, too.
I had horses, when I was a teenager, which I loved.
I've had jobs I loved. I have friends I love, and a man I love. And I've been loved.
I've had experiences, and lived my life the way I wanted to live it. But some of these children have spent most of their lives in hospital.

But, no doubt my own problems will remain more important to me, than anyone else's problems. Just like everyone else in the world's problems, will still be more important to them.


I had my onc appointment on Tuesday, which, to be honest, I was dreading.
I've been feeling worse and worse. I can't walk anywhere, without getting completely out of breath, dizzy, and my heart beating really fast.
I almost keeled over in the hospital lift, and my dad had to hold me up, when we got out.
I have no appetite, feel sick all the time, I sleep alot, and generally just feel really really grotty.
But liver function tests show that things seem to be 'stable'. I'm not entirely convinced, to be honest.

We spent the entire afternoon at hospital; in and out with my onc, blood tests, chest x-ray. And I missed my Reiki appointment, which was a shame.

Exciting news of the week..
My wheelchair's arrived.
I just need to feel well enough to leave the house, now!

God

I received a message today, saying that I don't seem to say much about god.
That's because I never have, don't, and never will believe in god.
I'm pagan/spiritual/agnostic. I can't, and have no desire to label myself any further than that.

The same person then travelled back in by blog, to last August; when I'd had a bit of good news about my liver.. there was no progression. This is apparently thanks to god.
I'm wondering if this person has read about any of the shit I've been through since last August? Brain tumour, brain surgery, months of not being able to walk or see properly, whole brain radiation, progression in my liver, jaundice, feeling too ill to even leave the house now, wishing I was dead?
If the good things are thanks to god, all this awful crap must be thanks to god too. Wow, god must really love me, to put me through hell.
I'm sorry if anyone takes offemce to this, but it's my blog, and I can write whatever I want to write.

None of this is meant to be taken personally by anyone. And while I DO appreciate people praying for me, to whatever force they choose to pray to, I do not appreciate being told that I should thank god for the good days.
I don't appreciate having god thrust upon me. I'd never do that to you, with my beliefs.


Anyway, onto..
Liver, Yellowness, and Hospitals

I saw my onc last week.
The jaundice is being caused my tumours pressing on, and blocking my bile ducts.
He decided to stop the chemo, while we attempt to drain the bile. While my bile ducts are blocked, there's a high risk of infection because of all the gunk trapped in there.
This risk is increased because chemo is surpressing my immune system. So chemo has been stopped for the time being.

On Wednesday, I had a stent put in my bile duct.
This was one of the most horrendous things I've ever experienced.
I was supposed to be under heavy sedation, but didn't feel like I'd been sedated at all. So was all too aware of every god-awful minute of the hour it took.
It literally felt like I was having my stomach ripped out.

There's a chance I'll have to do it all again, to put another stent in the other duct. I've no idea how I'd face that.
Nothing seems to have changed so far anyway. I'm still yellow, itchy, and feel like crap.
I'm so angry with myslef, for taking the decision to try and get on the Tykerb trial, in December.
Chances are, if I hadn't waited for that (which I didn't get onto anyway), and had started the chemo straight away, I wouldn't be in this position now.

Well..

I know it's been a while since I've written. And I apologise to those who've shown concern for where and how I am, and I haven't responded too.
I just haven't been well enough to spend time at the computer, let alone find the energy to write here.

After being woken in the middle of the night, a couple of weeks ago, with awful pains in my side, yellow eyes, and feeling particularly ill, I found out that my liver had begun to fail, and wasn't functioning well enough to take part in the Tykerb/lapatinib trial I'd been pinning my hopes on.

An appointment was promptly made with my oncologist for the following day, who started me on the chemo (Xeloda/capecitabine) that I could have started six weeks previously, had I not been waiting to get on the trial.
This chemo is in tablet form.. twice a day for two weeks, followed by a weeks 'rest'.
The Xeloda has given me stomach cramps, and a dodgy tum, for two weeks so far (and still counting). It's kept me up half the night, aswell as plaguing me during the day.

I was also sent for an ultrasound liver scan. The doctor doing the scan decided that the cancer in my liver hadn't changed much since the previous scan, before christmas. But that my bile duct was being obstructed by 'something', as yet unknown, hence the jaundice.
Tomorrow, I'm to have an MRI scan of my liver, to try and establish what's going on, why my bile ducts blocked, and if a liver stent might help alleviate the jaundice symptoms.

I've never known much about jaundice. I just thought it made you yellow.
And yes, I'm yellow.. my skin, my eyes. Particularly my bald head.
What I didn't know is that it makes you feel so ill. Sick, tired, upset stomach, itchy, and just generally horrible.
I'm itching like a crazed woman. All my skin itches constantly. It wakes me up in the night. I'm itching all day. I have scratch marks all over me, made by my finger nails from the constant scratching.
I read somewhere that the itching sometimes drives people to suicide, and I can well believe it.
My onc prescribed colestyramine to try to help with the itching, but I'm not convinced it's working.

So, this is why I haven't been here. I haven't been anywhere. I've felt too ill to go anywhere. Apart from to my parents. I've now moved back to my parents house, because I haven't felt well enough to be by myself, or take care of myself properly.
I'd love to be able to go somewhere.. out for lunch, or even just out in the car (with someone else driving, obviously. Seeing as I'm not alllowed to do that anymore). But I can't even sit in the car without feeling horribly ill and exhausted. Never mind get out of it, at the other end of a journey.
I hate the thought that I might never be well enough to go and visit my friends at their homes, again.

I suppose I hate feeling that I have no 'hope', or future left. I feel that I've really had enough now, and I just want it all to be over.
The future always excited me. I loved planning things, and doing things.. holidays, what I was going to do for work, etc. I loved my job, before I had to give it up for this cancer crap. I'd always dreamed I'd have my own little witchy shop one day.
So many things I wanted to do, and places I wanted to go. I've never even been to the south coast of the UK.. always wanted to.
I wanted to go to Edinburgh again, and North Wales.
Now I feel that's all gone. I have no future to plan for, or get excited about, anymore.

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 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.

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.