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Thursday, 21 January 2010

Today I have been in the bedroom all the time. The spinal cord compression is completing now. The legs are complete dead weights and I can't stand anymore. It's making it extremely difficult to transfer from the bed to the commode which is right next to the bed! So going down the stairs is just unmanagable. The stair lift should be being fitted tomorrow afternoon so hopefully I'll have a change of scenery from tomorrow sometime! At least I've had the laptop upstairs with me! But actually it's been quite busy with physios, OT's, hospice nurse and finally district nurses who have fitted a catheter and what a relief that is! It's been tiring trying to get to grips with some of the new equipment so now I won't feel like I need to transfer to the commode quite so much. I've already drained 2 litres in the last hour! Sorry - this might be a bit too much clinical information for some of you! Had a bit of a low when the Marsden say they don't want to give me any more chemo because they think it won't work, but we'll see how I am next week and contest their decision!


Anonymous said...

Hi Katie - it's been years since I have seen you, Cuffley School a distant memory...the link to your amazing blog was sent to me by Charlotte (Earley), you haven't changed a dot, still so beautiful and I just wanted to send you my love and every positive thought ... with all my love Kate Stannard (now Brook) xxx

Anonymous said...

hi katie,
i was so touched that you texted me to wish me well for my operation last friday. with everything that you're going through you still thought of me. you are truly amazing! thank you!
i have been cooped up in bed all week, the staples are really tearing into my skin now and it feels sore. hopefully the district nurse will pop over to take the staples out tomorrow and hopefully it will be more comfortable then. the operation went well though, thanks again for your thoughts and support.
hopefully i will be back to the routine next week, so please do let me know if you need anything.
big hugs, you inspirational woman!
sonja next door but one! xx

Tom said...

Dear Katie,

You keep inspiring me as a big sister should. Your determination and positivity is an example to us all. I love you so much.



Melissa Chappell said...

Hi Katie,

Hopefully if you can get more comfortable with your new aids, your body can focus on fighting the growth and next week they will let you have the treatment you want and need. You have so many people wishing it will shrink!

You are, as so many of your friends here have said, an inspiration. Helplessly watching on, all I can do is join with everyone else to pray and wish you well.

Melissa xx

Mrs Caswell said...

You are an amazing,strong & courageous woman. You have three amazing children and now we know where they get it all from. Their amazing mum. I send my love, huge hugs & kisses to you. Stay strong & keep fighting.
Love Mrs Caswell (Sue)xx

Marianne said...

Dearest Katie

I'm glad you've been helped to feel more comfortable today, and hope that you can get downstairs tomorrow for a change of scene. Knowing you, I'm sure you will be fighting to have that chemo if you think it's the right thing for you to do. You still make me laugh - 2 litres - you always did give us all the information!!! Glad you found relief in the true sense of the word.
lots of love
Marianne xxxx

Jill said...

Katie, have spent all evening thinking of what to put on your blog. Have written, then removed, written then removed. So, am going to stop trying to be clever and send you an electronic hug instead. Squeeeeeeeze. Sleep well my BB friend.


Rebecca said...

Katie - I see you've still got your incredible fighting spirit, and am sure you will put an excellent case forward to have the chemo next week. Hope you're feeling a bit more comfortable with the catheter now - you're obviously very well hydrated what with draining 2 litres! I am thinking of you continually throughout the day, and hope you are managing to get some proper rest (and Giles too).
Much love
Rebecca xxx

Dawn (Oz) said...

ah Katie, reading about wee brings back some very fond memories of Archway! Glad that you're more comfortable, and rest up so that you will be in good shape to argue for the chemo. Fingers crossed you can change their minds. If love and support count for anything, you'll be just fine because you've got so much of it. Hope it helps. Lots of love, Dawn

Anonymous said...


Thanks for all the information - I'm glad you think it's important we all share as much as possible! Now you've got some more help relax and concentrate on getting better! We're all behind you!

love Catherine Wakelin (Grainger)

Anonymous said...

Hi Katie

I haven't seen you for ages but Becky has been telling me how you are and I have been thinking about you a lot and wishing you well. Reading your blog, I am just so full of admiration for you.

The photos are fabulous, your kids are gorgeous and you look a million dollars (just as you did when we were 18)! Your wonderful positive energy and spirit must be helping your body to fight the tumour.

With lots and lots of love from Elly x

Anonymous said...

Dear Katie,

sending all our love and every last bit of positivity to you as we don't need it half as much as you do - I've found you another poem - I hope you don't mind - it's by a favourite of mine - Emily Dickinson

"Hope" is the thing with feathers

"Hope" is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—

And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—

I've heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.

lots of love, Nicky Max and Aurelia xxx

Anonymous said...

Hi Katie

Just wanted to say, keep stong and keeping fighting, your amazing women. we,ll all behind you in everyway possible.

lots of love and big hugs

Debbie (Owen's mum)

Anonymous said...

Hi katie,

you dont know me but my friend nikki (mcgelligott) was telling me about you and what an inspiration you are. You were still on my mind driving home yesterday and after picking up my kids came home and logged onto your site. Keep going Katie i am praying for you every day from now on and you have a gorgeous and loving family that you must be sooo proud of. I hope i send out some positivity all around. Wow you are amazing .......... Mrs Spires

Anonymous said...

Hi Katie,

We don't know each other but I have been following your blog for some time and think of you every day. I just wanted to send you and your family my best wishes and tell you what an amazing person you are in showing the strength and positivity that you do. We can all learn a lot from you.


Anonymous said...

Hi Katie, Hopefully your stairlift has been installed so you can get around the house now. Fingers crossed for more chemo next week and will be over to visit you again soon. Lots of love Amanda xxx

Christel Ainge said...

Dear Katie,
Thinking of you again today as I do everyday and finding some time to send you a message. Have just sent you a text to say that Elise can't wait to go to Sam's party. Keep focusing on the positive (easy for me to say)and I really look forward to seeing you soon. Lots of love,

louise and david said...

Goodnight and god bless. Hope you have a restful night as possible. You are so good keeping in touch with us all as you do. Your friends are great - this blogg is so supportive. Keep fighting Katie we are all on your side.
Louise, David and boys xxxx

Anonymous said...

Dear katie, Reading your blog makes me see how amazing
you are. You are so strong and postive, and your family must be so proud of you. It's always nice to see your beautiful smile in my class at hanbury. My family and I would like to send you our positive thoughts and lots of love. Take care katie. Love terri xxx