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!

Hospital Today

Thought I'd better write about today's hospital visit, before I forget what's what..

Saw Dr P, who informed my that my bilirubin levels are almost back to normal now. Normal is 4-22. Mine's 24. Which, considering it was 250, at in January, is good!
We don;t know if it's because of the stent, or if the chemo's shrunk the tumours, so reduced the obstruction in my bile ducts. I suppose it's likely to be a combination of both.

While my bilirubin's gone down, other liver function results have gone up a bit, which could be cause for concern.
It could mean the capecitabine's not working as well anymore. Or it could be something else that's affecting it.
It's not great that they've gone up anyway. Liver scan's been ordered.

Over the past month or so, I've been having pain in my shoulder too. We know there are bone mets there, so it's likely that they're worsening too.
I'll be having a few blasts of radiation on my shoulder, to hopefully help with the pain.

Dr P's also referring me back to Nottingham City Hospital, now we know the Lapatinib/Tykerb trial's still open (for now). I just hope I'm still eligible for it, and I manage to get there before the trial closes.
While I was there, I got my prescription for cycle 6 of capeciatbine/Xeloda.

Not much else to report today.. I'm tired from hanging around the hospital all day.
Dr P was running behind, which I never mind, because I know he doesn't rush his patients. He always has plenty of time for us.
Then I had my zometa infusion. They found veins to take blood, and for the zometa, first time, which is quite unusual for me!

Race For Life

An online friend of mine's wife, is doing the Race for Life.. please sponsor her, if you can spare a couple of pounds :o)

http://www.raceforlifesponsorme.org/suerainbow

I know this guy, through an a car forum, that I joined when I had my MGF.
These people raised almost £4000 for me, when I thought I was going to have to pay for treatment.

This is what Paul said, on the forum..

Hi people,

Been reading Dee's post, which is heart wrenching stuff.
My family have had some rough times this year with cancer related moments
(the worst of which is my mother died 2 months ago of cancer and I have a
wonderful 17 year old niece diagnosed with an aggressive brain tumour who has
had a brain op and just completed 8 weeks of intensive and daily radiotherapy).
I have been doing my fund raising bit, and so is my wife.

My wife Sue did the 27 mile moonwalk around London last year when loads of
ladies did the marathon route at night in thier bras (cor!) and this year she is
doing the Race for life this year, a running event.

I hate asking for sponsorship, but Race For Life has made it much easier by
having an on-line page for it's participants and I would be very pleased if you
visited it and even made a donation - no matter how small - as it seems to me
that everyone has or will be affected by cancer at some point in thier lives and
the more we can do to fight it, the better!

Thanks in advance, the page is:

http://www.raceforlifesponsorme.org/suerainbow

Paul

Six Months Ago Today...

I was having brain surgery!

I've just realised that it's 6 months ago today, I had my brain op.
My oncologist told me that the "damned lies and statistics" (ok, so he didn't say that) gave me 6-9 months to live.
I know the liver issues are more likely to do me in now, than the brain.. but who knows, really. I might get eaten by a giant mouse, next week!

Well, I've made 6, so far.
For a while, I really didn't think I would, but I have. And I'm not planning on going anywhere yet.. I have a new fish to look after, and holidays to plan!

Fishies & Harps

Right then, where are we?

Since I last blogged, I've bought a harp.. the musical variety.

I've wanted one forever, so I splurged my birthday cash (it was only a small, cheapy one, as far as harps go).
It's just lovely :) I've never attempted to play one before, so when I learned how to play Frere Jaques, I was a bit impressed with myself.
I was even more impressed with myself when I figured out part of Pachelbel's Canon (without music to follow). It's one of my favourite pieces of music, so now I'm on a bit of a mission to figure out the rest of it!

This is the harp. It's made from rosewood, and is very beautiful..




I've also got myself a fishy.. of the swimming variety, not the eating variety.
His name's Alfie, and he's a Betta. Also known as Siamese Fighting Fish. Also something else I've wanted for a while, but didn't want to lumber my dad with something else to look after (along with Dillon, my kitty) when I'm gone. I hate having to think that way, but that's how it is. But I've sourced alternative accomodation for him, should anything happen to me.

This is Alfie.. he's my bootiful blue boy..







I've been having some issues with the lymphodema in my left hand/arm (mainly my hand). My Macmillan nurse is coming to see me tomorrow, so I'm going to ask her to get me sent to the lymphodema clinic again, because I'm not convinced the sleeves and glove I've got (which I very rarely wear, because I don't usually need to) from a different lymphodema clinic, are even the right size!

Raise Funds for Weston Park Hospital Cancer Appeal

This is where I ask for your help, ladies and gents.. and it wont even cost you anything!

Weston Park Hospital is one of only three centres of excellence for cancer treatment, in the UK.
This is where I recieve my treatment, under the excellent care of their oncology team.

If you're a bit of an online shopper (like me!), you can help to raise funds for the Weston Park Hospital Cancer Appeal, just by registering through The website.. http://www.cancerappeal.org.uk/How+to+Help/Shopping+Online+for+Weston+Park.htm.
There are many places you can shop at, including shops like M&S, Currys, Tesco, Boots.. places everyone shops at. And it wont cost you a penny more than you'd be spending anyway.

Registration's easy.. it'll only take you a minute or two.
You can also register with Easysearch, to help raise a bit more, without even shopping.

I hope this doesn't come across as being 'spammy'. I just want to make people aware that they can help raise funds for this hospital, who've been so good with me, over the past year.


In other news..

Not much to report really. I'm still feeling better, with the steroids (praise the steroids!). I no longer feel my death is imminent, though it could be.. who knows.
I'm still able to eat, and don't feel sick all the time anymore.
I saw my onc yesterday, and I've put a couple of pounds back on, since my last onc visit, three weeks ago.
I still have awful stomach ache/pains, and a dodgy tummy, which I'm fairly sure is down to the Xeloda/capecitabine chemo tablets.
I started to get hand & foot syndrome on my feet, but Udderly Smooth cream seems to have rescued them, for now.

I had an ok birthday, though I wasn't too well with my tummy.
My lovely friend Lisa, had a star named after me.. a beautiful present, from a beautiful person :o)

I had a fair amount of money given to me, for my birthday, so was forced to go shopping again at the weekend!
I've also ordered something I've wanted for as long as I can remember.. a harp! I eagerly await it's arrival!

Shopping

I felt I had to come write something here, after I just heard that my cousin found my blog, and it made her cry.
Oddly, I was trying to look her up on Facebook, yesterday, but couldn't find her.

So, I've been feeling a little bit better, over the past week or so. I've started taking steroids again, which seems to be masking some symptoms, and maybe helping the anti-sickness meds to work.
I couldn't eat at all, a couple of weeks ago. I had no appetite, felt sick all the time, and I'd started to be sick too. But the steroids seem to be helping.
I can eat a bit again now, which is nice. It's also nice to be able to do a bit more than just sit on the sofa, feeling like I'm going to throw up any minute.

At the weeekend, James and me went out, for the first time in three months.
I've felt too ill to go anywhere apart from hospital (well, I felt too ill to go there too, but didn't have much choice). But on Saturday, James wheeled me around Meadowhall, in my wheelchair. It was just so good to get out!
On Sunday, we went out for lunch.. I had steak. I couldn't eat alot, but STEAK! I love steak, and haven't had that for months either.

I still have horrible stomach pains, and a dodgy tummy, from the Xeloda/capecitabine chemo. And the hand-foot syndrome (sore, cracked soles of feet and hands) seems to have started now too. Only on my feet, so far.. they're just really sore, despite using every moisturiser/emollient known to man, and taking tablets that are supposed to prevent it. I was hoping to escape that one. I was hoping to escape all the side-effects, really!

Yesterday wasn't a good day. I was up in the night alot, the night before, with a bad tummy. So I woke up feeling grotty, tired, and still with a bad tummy. But I took some steroids, went back to bed for a couple of hours, and felt a bit better when I got up again.

On a shiny note.. it's my 32nd birthday tomorrow (3rd). A few weeks ago, I was doubtful I'd make it.

My 'Death Book'

I'm not sure if I've mentioned this before, but I have a little red leather-covered 'death book'.
I created this book when I found out my liver was failing, the cancer in there was growing again.

It talks about how I want things to be at the end.. where I want to die, what kind of funeral I want, the music I want at my funeral, certain things I want certain people to have. That kind of thing.
I made my dad aware of my 'death book's existence, because he obviously needs to know about these things. I told him to read it, whenever he wanted.
He told me yesterday, that he reads it every morning.
This all seems so wrong. My dad shouldn't have to be reading about what his daughter wants, when she dies.

I feel like I'm robbing him of something. I feel like I'm robbing James. And I feel like I've been robbed of a life I'll never have the chance to have.

I've been thinking alot, about the things I never had chance to do, and now never will.
Getting married, buying a house, at least having the option of having children.
Just normal things that most people take for granted.
I think I'm becoming more and more angry about it, by the day. I still don't feel well enough to go anywhere, or do anything, so I've got far too much time to think about things like this.

I'm so sad, angry, upset, and a whole host of emotions that I don't even think there are names for.

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.

It's 2008

So, christmas has gone, and the new year's here.
Happy new year? To be honest, I'm a bit sceptical about that one!

I wish I'd have appreciated those carefree christmasses more.
Those christmasses where I could laugh, joke, eat, drink, with my family and friends, without any more pressing worries than going back to work next week.

Because, you see, no matter how much I told myself and other people, that I was going to enjoy the time with my family, because this will probably be my last christmas. No matter how much I didn't want to think about how cancer's ruling my life, I did think about it.
Every minute of every day, I thought about the fact that I probably wont be here with them, next christmas.

I've been taking a cocktail of painkillers and anti-sickness medication, just to help me face christmas dinner (which I could hardly eat any of).
Constant nausea and pain, don't a merry christmas make.

If anyone out there is thinking "What a waste. There are people far worse off than you. You should be grateful you have such great family and friends. And should have just forgotten about cancer for a while, and enjoyed christmas." I challenge you to live life in my shoes, and see if you feel any differently to how I feel.

Last year, my doctor told me I'd most likely die next year (he actually said six to nine months. Which is now four to seven months).
Next year is now this year. And that's frighteningly close.

I've been in my flat for almost six months now. That time's just flown by. It's no time at all.
Six months is nothing. It goes far too quickly.

I've been with my other half for almost two years. We met when I'd just finished my first course of chemo. That was before my cancer became 'terminal'.
I had hope for the future. We had hope for the future.
Now, two years seems like no time at all. It's gone far too quickly. I want a lifetime with him.. my lifetime and his lifetime. I'm furious with cancer, for cutting this short.
Because even while I'm still alive, it's being cut short.
I'm tired alot. I have no energy. I feel ill alot of the time now.
We can't do the things we should be doing.. things I want us to be doing. It all just seems so unfair.

When I look at him sometimes, I can see in his eyes, what this is doing to him, and it breaks my heart. I know he tries to hide it, just like I try to hide it. But it's there.
I can hardly bring myself to look in his eyes now.

I look at my family, when it's mentioned. And while they seem more willing to listen, when it's mentioned now, I can see how broken they look.

And I think of all the other people, in similar and worse situations. And I wonder how they deal with this happy new year.



It's 2008, Part Deux

Having just read Minerva's blog.. a blog I visit regularly.. I came across a link to Jenny O's blog.
I found this post, which makes me feel almost ashamed of how I feel..

"My aunt Sylvia died this morning. She told her (grown) kids to go to
school, asked for a drink of water, and took her last breath. She had end-stage
pancreatic cancer and multiple myeloma, and she was at home, in a hospital bed
in her living room.

We lived our lives at a great distance. Sylvia lived in Texas (San Antonio,
Houston, Kerrville), ran a balloon delivery business, married a few men (not at
the same time), and loved fiercely. She was the strongest and most indomitable
person I ever knew. The way she lived with cancer taught me how to do it: You
live. Just keep living. Keep doing things you want to do. If your bones are
brittle, go to a water park and ride all the slides, and then take meds and
sleep all the next day. If people you love are there, spend every ounce of your
energy laughing with them, and then take meds and sleep all the next day. Don't
be "sick" with cancer. It's an annoyance. It thinks it's in charge, so let it
think so, but quietly go about your own business and don't let it stop
you.

Until it's too strong. And then, recognize that you're tired, and lie back
and marvel at the fresh, clean taste of cold water, and listen to songs that
have always moved you, and wake up a few times a day to smile at the faces of
the loving ones who surround you. Go home, and have your dog lie on the bed with
you, and open the blinds each day to watch your own neighborhood and your own
yard. Sleep, while your heart keeps beating and beating, while your nails turn
dark and then pink again, while your breathing gets ragged and then smooth
again.And then, one morning, speak softly to your children, and
just...Stop."