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



Friday, 29 January 2010

Today started well. Katie was feeling okay and she managed to get downstairs to see her friends, Christel and Helen and then have some lunch. During this time the adapted van was delivered - a renault trafic - which now stands next to the Q7 making that look small, graceful and streamlined!
Unfortuntely the afternoon has not been good. Katie started to get back pain at about 2.30pm. It was the worst pain yet and didnt respond to anything we had here. Fortunately we had enough people around that I could send Jane and Katie's mum through the rush hour traffic to get diamorphine, while Robert sorted out tea for the kids. Meanwhile I stayed with Katie, but felt so helpless as she suffered. Eventually the diamorphine eased some of the pain but it seemed to take an eternity and has now left Katie still in pain but feeling so tired. She is scared to move as every tiny movement seems to set it off again. She is worrying about how we cope from here on. And worst of all she feels the pain is already returning.

22 comments:

Christel Ainge said...

Dear Katie and Giles,
I am so sorry to read about the afternoon you had today especially as the day had started so well. It was a real pleasure to be able to pay you a visit. it made my day. So I feel all the more gutted to realise that you were suffering later on. Having seen you today, I now fully grasp the meaning of other people's comments when they say that you are amazing. Your determination to deal with the situation head on and not give in is wonderful. I found that talking with you was so uplifting and now I feel so so angry about that pain!
I think of you every day throughout the day and I really hope that doctors can get the pain under control so you can get out and about a little bit more. I hope to see you again very soon.
lots of love
Christel Ainge

Anonymous said...

Oh I'm so sorry that katie is suffering so much and although it may not help I heard a comment today.....these things happen to people who are strong enough to cope. Katie is so strong and I pray that she doesn't suffer too much this evening. Let's hope she has a peaceful night. Take care. Love terri x

Anonymous said...

Katie, I really pray you have amuch better evening than the day you've had- and I really hope the pain does not come back on! Your picture has put me in my place, I thought I was good, but your portrait is a stunning one indeed and aswel as your daughter! And nice to see she takes after you too LOL! Well done Sophie!
I think of you everyday, I really hope you have a miracle happen to you. Love and wishes, E xxx

Rebecca said...

I'm so sorry to hear you've had such terrible pain this afternoon Katie - I sincerely hope that the diamorphine is continuing to lessen the effects of the pain and that you are able to rest easily tonight. I am thinking of you all the time and know that if anyone has the strength of character to deal with such debilitating episodes then it's you, but I can see that it must be utterly exhausting. I will be in touch tomorrow to see how you are. And I also wanted to say just how fantastic both the portraits are - you are both so talented - it's lovely that you've put them up on the blog for us all to see.
Till tomorrow then, much love, Rebecca xxx

Celia said...

Katie and Giles. You are constantly in my thoughts. I hope the diamorphine kicks in and gives you some respite Katie. You are an inspiration and so determined. Hope you get to go out in your new conveyance tomorrow. Love to you all
Celia

Anonymous said...

Dear Katie & Giles,,
I hope the diamorph is doing it's job and keeping you comfortable. Don't give up on trying to control the pain, take everything available to you so you don't have to waste your energy on it. I'm not sure what is available at home but get the pain team in if you can.
Giles, don't feel helpless, I am pretty sure that having you near makes Katie better able to cope with the pain.
The drawing of Sophie is fantastic, a talented family clearly! Love to you all,

Sally, Pete & Emma xxxx

Marianne said...

Dearest Katie and Giles

I'm so sorry to hear about the pain getting so much worse. It's unbelievably unfair when you are already fighting so hard to stay on top of it. I really hope that you have managed to get it under control tonight and get some rest and feel better. You deserve it so much. I hope we see you tomorrow, but most importantly that you feel better.

lots of love
Marianne xxx

Anonymous said...

So many times I started to write and then decide to delete it because afraid to say silly things. Tonight I feel to send you just two lines. I think about you every day and many times a day. Beleve strongly that miracles can happen and for me you are the one who deserve one the most. all my love to all of you and my lovely Evie especially. Stefi(Hanbury)

Anonymous said...

I think of you every day and send you love and hope and just wish this horrible disease wasn't doing this to you. I hope you can get the pain under control, and that you can get some sleep and rest, god bless you, all love....

Anonymous said...

I really don't know what to say but I didn't want to just read and run. I'm sorry you had such a crap afternoon Katie and Giles - you are doing brilliantly. I don't know about anything medical but I really really hope the latest pain relief gives you some comfort and that things are improving since Giles posted on here. Your strength as a family is inspirational.
Love Mandi

Anonymous said...

Dear Katie and Giles i am so sorry to read about the pain of yesterday afternoon- I do hope you were able to control the pain and have a reasonable night.
Thinking of you all constantly

Much love from us all Clare Ian & Co xxx

pat said...

Dear Katie
So so sorry to hear about your dreadfull pain yesterday and pray it has eased now. Hope you get to your reunion today. Praying for a miracle everyday for you and your family and always thinking of you. Keep strong.

Much Love Pat xx

Anjella said...

Oh Katie - that's just pants!!!!!
I was admiring the beautiful portraits that you and your daughter have drawn - how on earth do you have the nergy & focus to do it - I'm stunned, but maybe I shouldn't be as you are evidently an incredibly amazing woman!!!!

Hope the diamorphine is doing the trick -

I was chatting with Naomi about you and we remembered just how fab you were then, and just how much we are distressed about your current plight.

I wish you - and especially Giles - many best wishes in these most challenging times.

Take Care

Anjella & family

liz said...

Dear Katie
I am so sorry to read about the dreadful pain you suffered yesterday. I do hope that you have got some relief and that the pain can be got under control longer term.

I do hope you get to see your friends tonight.

Love Liz

Anonymous said...

Dear Katie
I am so sorry to hear that you have been in terrible pain.I hope the pain has eased now and you are more comfortable.

Giles, that feeling of helplessness is the worse thing ever.But just being there with Katie through these distressing times is helpful enough.Its far more helpful than we realise sometimes.

Its wonderful that you have a good and supportive family around you.

The portraits are both brilliant !

Thinking about you all the time

Love Andrea

Anonymous said...

Dear Katie
I'm so sorry to read that you are suffering so much and hope that the pain is under control now.
Giles - I'm sure Katie couldn't be in better hands so try and not feel helpless even though it's hard not to.
You are in my thoughts always katie.
Much love to you all
Nicola Mc

Anonymous said...

Katie, I think of you often, you are always on my mind. I am so sorry for your pain, I hope it subsides - you are such a lovely person with a wonderful family. God bless you all.
Cathy

Anonymous said...

Dear Katie
Get that pain relief into you as much as you can as you dont deserve to suffer. We are all thinking you every day.
Dear Giles, if you are the same person I knew so well all those years ago, then I am sure you are not helpless, your strength will keep Katie going. Look after yourself too, and your beautiful family. Love Hollie and the clanxxxx

Anonymous said...

Dear Giles and Katie.

here's hoping and praying that the pain gets under control - its so unfair to have to contend with this on top of all your other challenges. I wish there was something I could do.
Sending all my love and positive vibes and pain relief through the air,
lots of love
Nicky Max and Aurelia xxx

Sara said...

Dear Giles & Katie,
We hope that the pain relief is working now and pray that you get some help/advice that controls it better very soon.
Pain sucks! Andy banged his knee off the handlebars of his bike today and he has done nothing but moan about it... we can't imagine what it must be like for you guys. Fortunately you are a strong team and we found an ice-pack!
Thank goodness you had such a good morning... it is a real skill to find something joyful in every day. So many of us let the world pass us by.
Please give our love to everyone there... we think of all of you... pretty much all of the time. Lots and lots of big love, A & S xxx

Melissa C said...

Hi Katie

I hope that today has been more manageable and that you have been able to have some relief from the pain

Thinking of you all.

Mum found a great photo of us all at infant school as squaws. Will send it to you and hope it raises a smile :)

Melissa

Anonymous said...

Dear Katie
So sorry to hear that your in so much pain. Every day I check to see how you have been, hoping for news that you've had a good day. Your courage, as always, amazes me. Sophie, Sam and Evie have a wonderful mum (and dad!) Keep fighting Katie, we are all behind you x with love, Shelley (Ruby's mum)x