Thursday, 31 May 2007

Laugh Out Loud - Though it's not really funny!

Once again back in clinic this week for a shot of my regular chemotherapy drug Vinblastine.

Apparently one of the doctors has decided to increase the rate of it so i will be even more exhausted than i usually am - great!

No real news this week as my doctor has gone on holiday for a week, the lucky git!
So i'm left here waiting once again and won't find out anything 'til next week.

I had to get checked over by another doctor however as i have had a cough and cold for the past week. She says i've most likely got a chest infection so i've got to take cough medicine, YUCK! Lol!

Someone said to me today,
"Amy, how come you are always smiling when like the worst thing is happening to you?"

And i just laughed. I told her that if i didn't laugh, i would cry you know? I don't see the point of moping around feeling all sorry for yourself when you can't really change anything by doing that. You've just got to go ahead and fight it, oo and keep smiling :)

Catched up with the legend of a macmillan nurse Claire and had a laugh and joke with her. She's brilliant!

Apart from that nothing really happened i feel kind of lousy today actually, i think it's just the cold and everything.....oooh and the fact that my guinea pig died today.
Bless his little heart, the poor thing.

Oooo and my flippin' hair has started to come out. The doctor near enough promised that the chemo i'm on wouldn't make it come out,but obviously it has.
It's coming out quite a lot but i'm doing well at covering it with my remaining hair at the moment - if it comes out anymore i might just have it shaved off again, lol. BALDIE! BALDIE! Haha! So if you have any spare hats lying around you know where to send them!

I am hoping i will finally hear some news next week and that the doctors have come to a decision, i will update here as soon as i have any.

Until then, keep smiling people. It could brighten someone's day :)

Thursday, 24 May 2007

So Much For My Happy Ending

Wow, where to start this week. Everything seems to have come at once and i've got lots of new information.

I wasn't due in clinic today for treatment but i had to go and see my doctor anyway so ended up booking in.
Earlier this morning i was sent for a chest x-ray to see how all the treatment is going and if it's done anything to the tumour....

Had it? ......Not exactly

The doctor explained that the chemotherapy i was taking had stopped the tumour from growing any bigger but hadn't made it any smaller.

He then gave my brain an overdose of information as he went into the different things he has planned for me next....

1. Fortnighty Vinblastine
This has been given the go-ahead at the moment and i'm starting with it again next week, same old same old i guess. Not as bad though if it means only fortnighty trips to the hospital

2. Radiotherapy
This is another option the doctor was looking at, but he has yet to hear back from the radiographer. Frankly i don't think this will go ahead, they had to stop it last time.

This is the most complex one of them all. It consists of four strong chemotherapy drugs that i will have fortnighty in the clinic. They have to be given over a period of 5 hours so i will be a day case patient. Not many side effects to these apart from the worst one i loss. Which once again means that if this goes ahead i will lose my messy mop of red hair for about the fourth time, gutted!
The doctor is not sure about this option yet either and is waiting to hear from his colleagues around the world. Even the most skilled cancer doctors are baffled with my case, like i've said before "I'm worldwide famous, but for all the wrong reasons"
I'm there special case - which probably means feed her any drugs as we don't know how it works.

So those are my three options - i have to go back in a few weeks to see if the doctor has heard anything about where to go next...joys!

Stuck once again in another rut, i just wish they'd get on and decide what to do with me next. It's the constant waiting and not knowing that is the worst.

Anyway will update again next week :)
Thanks for reading!

Thursday, 17 May 2007

If One Door Closes Does Another Open?

Went into clinic this week as usual for another dose of Vinblastine.

Finally managed to see my doctor and he had heard back from the surgeon - the surgery is out of the window.


The surgeon explained he didn't want to attempt any surgery as it would probably do more harm than good, which i suppose is a good enough reason.

Doesn't really help me though....i'm stuck in another rut again.....don't know what is going to happen next.

I've got to go back next week, not for chemotherapy, but for a chest x-ray.
This is to see if the vinblastine has been working and the outcome of it will help doctors decide what to do next.
If the tumour has responded to it then i will most likely continue with the vinblastine, but if it hasn't? The doctor doesn't know yet. I don't think they have any clue to be honest, stupid rare tumour hehe!

Aside from that nothing else was really mentioned, apart from the fact he is still waiting for a reply from a radiotherapy doctor to see if there is any chance of that.

Kind of a let down once again. Don't really know if it's bad or good news that the surgery can't go ahead. It's good in the fact that they are not risking my life attempting it and also bad as they don't have any other options at the moment.

Just have to wait and see really. Wow i seem to use that word so often when it comes to talking about my treatment......waiting

I've just had the best two days ever as well!
Me and my mom had our trip to London and it was amazing, just as i hoped it would be.

It was great to just get away from everything, have a proper rest (though we hardly got any rest at all!)

Again went to see a musical and this time however we day ticketed for it. This is when the box office releases 24 front row tickets every day for a discounted price.

Only problem?
You have to queue for ages in order to get them. The box office opened at 10.....we were queueing from quarter to 6 (and yes this is in the morning lol!)

Four hours in the dull weather, sore legs from the walking and a cold to match, but was it worth it?


We sat front row dead centre and it was the best thing ever.
The actors were amazing and their voices were mindblowing.
Saw everything in so much was seriously breathtaking.
Never had an experience like it before and probably never will again. Was amazing! 16/05/07 A Day To Remember :)

Everything is so expensive in London though, it makes me wonder how people manage to set up home there....i can see why you have to have a really good job! It cost me a fortune just to get there and sleep over for one night!

Shame we had to come back, seems like we were never away.
Kind of like a snap back to reality, back to the real world again.

Ahh well life goes on eh?

Will update again next week, once i get the results of the scan

Thursday, 10 May 2007

Same Old Story?

Wow, what a weird week it's been.

Ever had one of those days where everything seems to go wrong?
Well i certainly had one of those today.

Got into the clinic this morning to be greeted with tonnes of people...all waiting to be seen by a doctor and recieve treatment.
I've never seen so many people there on a thursday for absolutely ages.

We ended up seeing a different doctor today who didn't seem to know about much that was going on with my treatment. She had no idea if the surgeon had got back to us and didn't seem like she knew an awful lot about it....kind of disappointed i didn't see my usual doctor.

My blood count was fine so i was given the go ahead with the vinblastine.
After what seemed like forever, we finally went in to have it.
Took the doctor four attempts to get a cannula in my veins....very annoying, not to mention painful.
I had the chemotherapy eventually and could finally go home.

Ooo and then we missed the train....just my luck.

Overall a kind of sucky day today. Nothing seemed to go right and we still don't have any more news on the surgeon. Have got to return next week for another lot of vinblastine so hopefully the other doctor will be back.

On a more exciting note....

I am off to London in a few days for a little break with my mom.

It's going to be great and i'm super excited! Just a chance to get away from everything...even if it is just two days :)

I'm praying for good weather though, it doesn't seem to be that nice at the moment.

I know we're going to have great fun, lots of laughs and brilliant shows to look forward too.
Also heard a few new riffs in a couple of songs i love so i'm praying for them tooo, haha :D

Will update next week and let you know how i get on with the doctor, fingers crossed he will have some news!

Ooo and check this video out if you have time....
It was when me and some of my friends from the ward went to a conference called Find Your Sense Of Tumour (FYSOT)
It's where teenagers with cancer come together from all over the U.K and abroad to share experiences and just party, party, party :P
We always have an amazing time there and i always come away with fond memories, great new friendships and knowing more about my cancer and how it affects me and other people :)

Friday, 4 May 2007

And Because I Knew You......

Once again i find myself hearing those dreaded words as i ask a nurse how one of my friends from the ward is doing...

"Amy, i'm afraid they are no longer here."

I think to myself, why them?
What did they do wrong.

Then i realise i have to carry on fighting as i know they would have wanted me to.

See it seems to be a common occurence now....

When i first ever started treatment on the ward i got put on a bay with other teenagers my age. I met some lovely people there and we became close friends. We sort of made a silent pact to keep on fighting and try and beat this whatever happens.

Of the seven people i knew at that time, only two remain today......Megan and me.

Can you imagine what that feels like?
Making great friendships and then wondering how long they will last.
I'd certainly give my life anyday if it means that any one of these people could come back, they didn't deserve to miss out on the rest of their lives.

Michael, i know you have gone to a better place and God is taking great care of you up there so you don't have to worry - RIP buddy.

Yet through all this sadness and loss of another friend i find myself still smiling, knowing that they would have wanted me to stay strong.
Not only am i fighting this battle for me now, but for all my team mates i have lost on the way - and there is no way i am giving up easily.

On a less sad note, i went again for another dose of Vinblastine yesterday.
Spoke with the doctor and he told me that the scans and pictures have been all posted off to the surgeon at Heartlands hospital, just got to wait and see what he decides.

I find this sort of waiting unbelievably difficult.
Knowing my future is in the hands of a complete stranger....
I still find myself stuck, not being able to plan anything that far into the future as i have no idea when any of my treatment is going to happen.
Yet i still plan things in the hope that i can go - probably only to be let down again.

A postive note though...

Me and my mom are off to London for a few days - just to escape everything that's going on at the moment...proper chill time.
This is something that is definately going ahead, we have planned the chemotherapy round it this time.

Gives me something to look forward to

I've got to have the weekly Vinblastine for another 3 or maybe 4 weeks and then another scan to see if it's done any damage to the tumour - fingers crossed!

Will update again as soon as i find out any information about the surgery or if anything interesting happens inbetween.

Until then...

“The happiest of people don't necessarily have the best of everything; they just make the most of everything that comes along their way.”