Wednesday, 23 January 2008

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.

11 comments:

M77XNE said...

Dee my darlin, I can't even begin to imagin how crazed you are feeling with all your itching...I wish I could at least cure that for you sweetheart.

I feel so upset for you that you feel that you won't be able to think in advance about places to go/visit and also trips to your friends. I hope you are well enough for our little trip in Feb, all you are going to need to do is sit in a car for a little bit...not too long, just a bit :) I will be there to keep you going, you know what i'm like in the car..."Oh God" I hear you say, lol you love Dee!!! ;)

I want to help make your dreams and wishes come true, don't ever feel like there is something you couldn't you couldn't ask me to do, I am always there for you no matter.

I love ya buddie xxxxxxx

Foo ;)
x

lornagrl said...

Dee,

I am so sorry for all your going through. I want to let you know that you are in my thoughts and prayers..

I also want to thank you for sharing your feelings.

Hugs..

Lorna

Lisa said...

Hey babe,
I was hoping you would be itching less by now petal.Is it too much to ask that you could be prescribed something that would work for a change instead of more suffering for you? I guess so and that is why it sucks. Love you and miss you x x x
lisa x

nat said...

I stumbled over here, and your post made me cry. I am sorry that you are going through this. Please try to "hope" again, if you can.
I'll be sending healing light your way.

Anonymous said...

Hi Dee,
Just came across your blog. I will keep you in my prayers. Dee, I am so sorry for your suffering. You are so brave to share your story. I know you will help so many others by sharing your story.

Wendy(in california)

Anonymous said...

Dear Dee,

I'm glad to "hear" from you but also very sad that you're going through such a bad time. I hope they can give you something effective for the itching.
Thinking of you through this difficult time...
Gentle hugs coming your way,
Take care,
Love from Aisha

Anonymous said...

Hiya Dee...

Mum asked me to have a look at your blog, and it had me in tears. You say you aren't strong, but you have sat here and poured your feelings and fears out for anyone and everyone to see, and that is one of the bravest, strongest things anyone can do.
I know I've not spoken to you for a while, but if there is anything you need, or even if you just fancy someone to moan to, I'm here.
I'm so sorry this is happening to you sweetheart, cancer is cruel and ruthless.
If you want to get in touch, my email is hanna_ellen_69@yahoo.co.uk

Thinking of you,

Hanna (Pynk from CHF) xxxxx

Anonymous said...

I read your post the day you posted, but havent' been able to comment because I just have no words......... i wish there was something I could say or do.

Please know that you are constantly in my thoughts...

Jeannette said...

Dee -
My thoughts are with you. I hope the new chemo starts kicking cancer's bum and not yours. Hope the jaundice and itching are getting relief too. Sending you wishes for peace, health, and courage.

Anonymous said...

I'm so so sorry to read about your cancer and how young you are. I myself was diagnosed when I was 32, I am 38 now. I am writing for some help. I need to know about bone mets. When you discovered it, were you able to walk (I read you have in your pelvis)? I can't walk and wondered if I have bone mets. Thank you for your time and I wish you the best, you are so brave! :) My email is sheila_1809@hotmail.com.

Dee said...

Reply to Sheila Re: Bone mets

When the bone mets first reared their ugly head in my pelvis, I had real trouble walking.
I thought it might have been sciatica at first.. that's the type of pain it was (my mets are in the sacro-iliac region.. just to the right of my tail bone.).
But it was very bad, to start with.

It seemed to settle down to a more dull pain, after a while.
I've since had radiotherapy on the area, which has helped alot.

I suspect I have mets in the same place on the other side of my pelvis too now though, as the pain's appeared there now too. And again, I'm struggling to walk with it.

It could be a whole host of problems, cuausing your pain though. And no-one will know if you have bone mets though, until you have scans. That's the only way to tell, and you'll drive yourself crazy wondering. So get in touch with your onc and get some scans booked!

Good luck :o)
Dee
xxx

"Anonymous said...
I myself was diagnosed when I was 32, I am 38 now. I am writing for some help. I need to know about bone mets. When you discovered it, were you able to walk (I read you have in your pelvis)? I can't walk and wondered if I have bone mets. "