If you want to send any photos from the party please send them to:
katiesfight@googlemail.com
Thank you



Saturday, 30 January 2010

So yesterday was awful - my worst yet. Nothing seemed to relieve the pain: oxynorm, sublingual fentanyl and I was worried that if I took anymore it would send me into a respiratory arrest! The diamorphine injection took forever too - well over half an hour to kick in and it didn't last long at all. My family left at 6ish and Giles then had other things to do and I was scared to be left alone. I didn't move off the hospital bed in the spare room because it started off the acute , sharp, severe pains around my stomach and ribs and down my spine again. Giles - bless him -slept on cushions on the landing and even passed water to me because moving my arms set off the neuropathic pain. We tried everything last night and it scared me that there was nothing that could be done to improve my pain control that quickly. On a pain scale of 1-10, I'd say I was at 15 for a good 3 hours in the afternoon! The on-call doctor came at midnight with more higher strength diamorphine supplies and I had 3 extra injections overnight. This left me feeling extremely drowsy this morning. The district nurses were able to move me onto my side this morning (good seeing as I was unable to move since 2.30pm the previous day.) The pain has thankfully been better today. I've increased the steroids and pregabalin again. So hopefully that helps. Eventually we made it to the reunion which was great. Lovely to see everyone and their children.

21 comments:

Anna said...

Katie, you are absolutely amazing. I read your post about how much pain you had been coping with and then up popped the photos of you with that beaming smile looking incredible and heading out with the family. I hope you are more comfortable now, lots of love from the Welwyn Garden City Gower x

Anonymous said...

God katie you are soooooooo amazing and brave, your whole family must be very proud of you. I hope the pain is under control a bit more for you now, and that you enjoyed your reunion (you look lovely in the pictures). Praying and thinking about you every day. Mrs Caroline Spires

Anonymous said...

Hi katie, you did so well to get out today, most people would not have made that effort but the reunion was obviously important to you and that is one of the many amazing things about you. Still putting everyone first and fighting through every day. Well done to you. God bless and sweet dreams. Love terri xxx

Anonymous said...

Hi Katie,
Just wanted to say well done for getting out today, I'm sure it was tiring but friends are a great distraction from discomfort. Looking good in those photos as always!
Wishing you a settled night.

Sally, Pete & Emma xxxx

Anonymous said...

Katie I'm lost for words you are amazing.I'm so pleased you saw your uni friends tonight looking beautiful as ever.
xx Nicki M xx

Anonymous said...

Katie you look fabulous in those photos! Glad to read a post from you today and that things seem to be better on the pain front. Giles is clearly earning his "helpful hubby" stripes - sleeping on the landing indeed! Keep your chin up and sending lots of love. Mandi

Karen Watt said...

Right, this is total bullshit. I'm crying here with frustration of my friend being so distressed. You DO NOT need to be in pain, especially at this high scale. I'm am so cross that no-one is managing your pain.

You need to have a s/c syringe driver put in straight away. Get Giles to prescribe and district nurse to put in. Use either diamorphine or hydromorphine as the opioid painkiller. Ketamine for neuropathic pain. Clonazepam or midazolam for agitation. Metoclopramide can be added if opioids cause nausea. All can be mixed in one syringe together with water for injections (not saline).

Sorry to be so blunt but someone has to take charge of this now.

Love you girl and I can't let you be in severe pain. I would never let any of my patients get in this state so I have to do my best to get my message and information accross to you.

You or Giles can ring me if you need dosing info anytime (day or night):-
0061 8 92863271

If you can't sleep & need anyone to talk to in the middle of the night when everyone else is asleep remember I am awake over on the other side of the world.

Karen

Anonymous said...

You continue to amaze, and as always look beautiful. xxx

Karen Batchelor

Melissa Chappell said...

I'm with Anna - you are in the worst pain ever and then by the end of the blog you manage to get yourself to a reunion! You're a phenomenon!

mel x

Jenny Crewe said...

Dearest Katie
I am amazed once again that after such a terrible day you still managed to get to your reunion and as everyone else has said, look so wonderful too!
What a terrible illness you are coping with and dear Giles sounds like an absolute star.
I pray every day that you manage to have some good time and keep the pain under control. I often think of you in the night if the kids have woken me. Just wish this had not happened to you my friend.
Hope you find the right cocktail today and things improve.
Much love
Jenny
xxxxxxxxxxx

Anonymous said...

Katie,
You're still smiling even through all this pain!! You are truly amazing. Thinking of you and sending you lots of love.

Sharon and Rob

Anonymous said...

Katie, what an amazing woman you are - most of us wouldnt have dared to venture out, but you did. I hope you get pain free soon. I think of you often - God bless you and your family.
Cathy x

Anonymous said...

Dear Mrs Pratt

Once again I am staggered by your bravery. I hope the pain is easing a little, my thoughts are with you.
Here's another installment of Sam's and Year 1's activities. We have been learning about 3D shapes in maths this week and Sam amazed me by knowing nearly all of the shapes, he also made a very good cylinder out of card. We did a little bit about symmetry and the children made some beautiful colourful symmetrical tiles, which are on display in the dining hall. In Literacy the children have been learning about Traditional Tales and we had some very good acting out of the 3 Little Pigs - lots of huffing and puffing going on! We had an interesting time in Science planning an investigation into whether plants need water to grow and how we can make sure that a test if fair - which resulted in the inevitable answer 'Make sure we all have a turn'. Sam showed the class his drawing of a football match. I asked him if I was in the team but his smile back at me told me that I wouldn't be first in his dream team selection!.

Best Wishes
Mrs Saliah

Anonymous said...

Katie - you really are amazing - your strength and determination to get to that party and to beat the pain is truly inspirational.
So glad you you enjoyed the party and bet the children loved the ride in the "new car"!
Enjoy today with your family and hope the pain is eased.
With much love and thinking of you all so much Clare Ian &Co xxxx

Christel Ainge said...

Nice jacket, nice scarf and very nice shinny shoes!!!

Very relieved that you could make the reunion.

love
Christel Ainge

Anonymous said...

Katie, it was absolutely brilliant that you made it to the reunion yesterday. Paul and I were so pleased that you were able to come and see everyone and I think I speak for us all in that your courage and determination is humbling and inspirational.

My offer of help at anytime still stands.

Angie, Paul & the girls. xx

Anonymous said...

Hi Katie, it was great to see you and your family yesterday, it wouldn't have been a proper reunion without you (or Pre wearing women's clothing it would seem)!

All our love and best wishes,

Nick, Melissa and Elena xx

Anonymous said...

Hi Katie,

Karen has a good plan there, lots of drugs in one syringe, love it. However one flaw, do not get Giles to prescribe, no, no, no, any of his colleagues, yes, yes, yes! Hope today has been a good day.

Love,
Sally, Pete & Emma
xxx

Anonymous said...

Hi Katie

Amazing !!! - is the only word for it.

It must have taken so much courage and strength to go to the reunion after such a terribile previous day, and then to look so beautiful as well.I'm lost for words !!

Love Andrea

Marianne said...

Dearest Katie

Hope today has been better than Friday and less busy than yesterday! I expect you needed a rest after managing to arrive so glamorously at the reunion and stay for so long. It was GREAT to see you there amongst all of us. I'm really struck by what Karen is saying - hope it can be helpful to you as she is clearly serious about what she thinks needs doing.

Wishing you a peaceful night's sleep and a good day tomorrow. Speak soon, lots of love
~Marianne xxx

Dawn (Oz) said...

Katie, so glad you made it to the reunion and from the looks of things, in such great style! Wish I'd been there too. Now, when you get a second, you have to explain the pictures that, if I am not mistaken, include your dad in a shiny leotard. You couldn't persuade Giles to dress up too? :) Hope that you're getting the pain under control and so are able to relax a bit more. Take care, lots of love Dawn