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.