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



Saturday, 23 January 2010

Yes - last night it was great to get out of the bedroom, out of the house and see my friends - who all looked fabulous! Great food, company. Wonderful, but no - I don't fancy a drop of alcohol!
Today has been an up and down day. Lovely to have my visitors. My sister washed my hair but what an effort to get me onto a bath board! I have to hold on to the sides of it as I have no balance from the waist down - so can't sit for risk of falling unless I have back/ side supports. It's a god job I don't have to wash my hair every day! Made it downstairs for some lunch afterwards but by 4pm I was exhausted and I've been in bed ever since. The consultant has phoned Giles and is convinced the chemo is not doing me any good and that I won't be getting any more from them! It's taken me some time to get my head around this - and plenty more tears! But it's not just up to me - it's the people caring for me. If I am weakened by it, it could make my time left alive worse. All I have is the strength in my arms to help lift myself from one seat to another with a slide board. If this is taken away - I really will be a vegetable!
So it is time to write to the children and talk about dying with them and I really wish that none of them have to go through all this. It's funny - it makes the pain worse just thinking about it - but then that's knowing that the tumours will just keep on growing - unless something miraculous happens!
The love from everyone around me is amazing. My mum and sister are here so much and I've never felt so close to them. I can't thank them enough. Of course Giles is just the best. (He has to clean my bottom for me - now that's devotion!)
Sam is so so excited about his go-karting party on Feb 14th and waits to hear who we have ticked as able to come/ not come every day. Thanks Charles & Carol for arranging all this. We are all really looking forward to it!
Please God - just give me more time to get used to all this. Let me live a little more. Let me get to Sam's party. Don't take more away from me just yet.

29 comments:

Marianne said...

Dearest Katie
I'm so glad you grabbed last night. I'm so pleased that you had the joy of clean hair today - that's so important!! I'm so gutted to hear the decision on chemo.
You've made each moment count for over a year now - that's an elusive skill which many people never get the hang of. So in a way you are giving yourself the gift of more time because you know how to live in (as my yoga teacher says) the present moment. Keep your faith in yourself - you are so strong. You have got this far without losing your way, I know you can continue, especially with your loving family and friends behind you.
I'm so looking forward to seeing you tomorrow.
lots of love
Marianne xxx

Anjella said...

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

Just thought that these words would suit?

Anjella

Anonymous said...

Katie I am so sorry to hear about your more deeply devasting news about the chemo! You face everyone's dreaded nightmare with such compassion towards everyone and everything, and not bitter about the world itself and the cruel decisions god decides for us all! (if you believe in that sort of thing). Must make you feel so angry, yet you refuse to show anger? You must be hurting emotionally so deeply yet you hide those feelings from us as I am sure no words can describe how deeply cut you are! You mention talking about dying... you explain yourself so broadly and to the point, that it makes me sit here and really feel the need to share with you some of my thoughts perhaps you may appreciate? Yet I am speachless... we dont know eachother so how can I help? I really feel a need to help you? The only one thing I can say to you... to perhaps ease only very slightly your concerns and worries you have for your children, and I mean this in the most sincere way, is that your children will be fine. I feel so horrid for sayign this and seems like no one else is helping you talk about facts perhaps? But I grew up without a mother from the age of 2...and although of course it was hard, I am ok you know! Not got any mental problems LOL (well I hope not haha) Your children will miss you like crazy and shed tears which wont go away completely- your the mother of course the pain wont go, but they will accept that its just the way things have to be, and they will learn to in their own ways deal with it! I really dont mean to be so horrid... but you must be so scared of their future and mentality? But anyway... still all these positive vibes people are sending you and your such a strong person in mentality and physically to what I have read... thats the last resort! There is still hope and we all pray for you and think of you on a daily / minute basis! Lots n lots of so much love for your family xxx E

Anonymous said...

Dearest Katie,

I've never felt so close to you either and I wouldn't want to be anywhere or do anything else than help you. I'm so proud of you big sister and will be here for you, for all you need (even if you want me to play the flute!!)

With all my love,
Jane
xxx

louise and david said...

Hi I'm thinking of you at this ungodly hour while I'm at work. Out and about assessing people in the middle of the night with various mental health issues - many of whom wish they were dead and see no future for themselves. If only I could wave a wand and allow them to swap places with you.
Katie I'm speechless and have tears rolling down my cheeks. Good job the lights in the office are turned down so my colleagues don't notice me !
I feel sick just imagining thinking of having that conversation with my boys. You are SO brave.
Love Louise x

Karen Watt said...

My beautiful friend Katie,

It was lovely to talk to you yesterday. Am thinking of and praying for you and your georgous family.

Don't worry about the chemo, it would just zap the strength you have left. Focus on your body healing itself instead. Do some breathing exercises and most importantly don't let the pain get out of control. Ask to see the pain team. Options are fentanyl patch, s/c or IT pump. You may have reservations about using the pumps but most patients are so relieved and wish they had used them weeks/months before their pain got bad. Can't avoid giving you my oncology pharmacist advice!

Aside that, from a friend, I truely admire your attitude and courage. You make the world a better place so let's hope you can remain in it for us all to benefit from your beauty.

I say this whilst Sasha is doing a big poo in her nappy whilst sat on my knee! Delightful!

Love,Karen

Anonymous said...

Dear Katie,

Cant seem to get you out of my mind, thinking and praying for you every day. Keep all that positivity going katie you are such a strong person. Want to say more but dont no how to word it (funny that never had a problem before), so for the moment i will get all my positive thoughts and send them out to you.

Mrs Caroline Spires

Anonymous said...

Hi Katie,
What a fantastic poem!!!
I'm thinking about you every day.
How lovely to have your hair washed!!!
Ewa scudamore XXX

Anonymous said...

Dear Katie,

I hope your pain is well controlled. I'm sure you and your sister will soon have the hair washing down to a fine art!
The letters for the kids are a great idea, hard as they will be to write. Memory boxes will always remind them how much fun you all had together and how much you love them. I don't think it is ever too early to start them as they could never be too full.
I am trying to think of some big positive thoughts for you but as I'm watching Emma play there is really only one that comes to mind. Too often we see parents stolen from life at a moments notice, car accidents or some such thing, the children left behind have no letters to read. It may not seem like much to leave with them but I know it will be treasured by each of them and it will give them so much strength for years to come.
You are always in our thoughts and I hope you have enough fight in you to enjoy many more hugs and create more great memories.
You amaze me, constantly.
Love Sally, Pete & Emma xxx

Nicola Keeling said...
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Nicola Keeling said...
This comment has been removed by the author.
Anonymous said...

Dear Katie,
I am so so sad words can't explain. You are so beautiful and I couldn't believe what Jo Wood (Knowles) told me. I remember you as a child being so beautiful and you as an adult are just the same looking at your photos. It is so cruel for you and for your family. I will think of you and log on to your blog to see how you're doing. I admire what you're doing and wish you lots of love and peace. It's not fair. Take care Katie. I hope you don't mind me writing.. I just felt I had to let you know that people in your past are thinking of you. With lots of love. Nicola Odam (hope you remember me!!) xxx

Nicola Keeling said...

Dear Katie,
I am so so sad words can't explain. You are so beautiful and I couldn't believe what Jo Wood (Knowles) told me. I remember you as a child being so beautiful and you as an adult are just the same looking at your photos. It is so cruel for you and for your family. I will think of you and log on to your blog to see how you're doing. I admire what you're doing and wish you lots of love and peace. It's not fair. Take care Katie. I hope you don't mind me writing.. I just felt I had to let you know that people in your past are thinking of you. With lots of love. Nicola Odam (hope you remember me!!) xxx

Anonymous said...

Katie,
can I mimic what has said before, the one small positive that you can take from the situation is that you have time to prepare (not sure that is the best word) the children. I know that if I had not had those last 12 months with Bethany it would have been even more difficult to bear. Although during that year at the back of your mind is the inevitable outcome, However, you still hope and pray that it will be different in your own case. It gave us time to make sure she was aware just how much we loved her, and always would. Sophie, sam and evie will always know that.

I remember your mum teaching me to play the recorder at Cuffley school, sorry I was pretty useless, music wasn't my thing! Looking at the names of people that have left messages on your blog you were a couple of years below me at school in the same year, I think, as my cousin Tim Martins and my brother-in-laws sister, Suzy Bell! I think the reason that I recognise you though is your long blond hair, just the same as your mum's was back in those days!
Keep fighting Katie, but don't put yourself through any unnecessary pain
Louise Walker x

Anonymous said...

Katie,

How many times have I said the word 'amazing' regarding you and this fight of yours? This word, now, just does not say enough! So I've looked it up on a thesaurus and here are just some of the alternatives. Remarkable, miraculous, astounding, incredible. YOU are all of the above!

You really are, truely, an inspiration. Your attitude, strength, poise, (need that thesaurus again) and dignity is such a lesson to us all. You are so frank and honest about what is happening to you but you tell your story with such feeling and amazingly, (that word again), touches of humour.

Katie, whatever happens, whatever the conclusion, I want you to know that I will never forget you and your remarkable journey that you have shared with so many over the past couple of years.

You keep fighting!

Lots of love,

Karen Batchelor. xxx

Oh, almost forgot! Of course Max will be coming to Sam's party. xxx

Christel Ainge said...

Dear Katie,
I really hope that you will have the time you need to achieve what you have set out to achieve. don't forget though that you have already achieved so much and none of that can be taken away from you, not ever. You are a very successful woman that so many of us admire for so many different reasons.You have 3 absolutely gorgeous children who look like you and will carry on your legacy for years to come. None of that will ever disappear. You will always be their mum and they will for ever be so proud of you. Be very, very proud of all your achievements. You have reached so many of us too.
I still think "Shrink" every morning(in the shower!)

lots of love

Christel Ainge

Anonymous said...

Dear Katie
Although we live too far away to be of any practical help, we wish we could do something.
Any words of ours seem inadequate to describe you, your situation and the unbelievably courageous and dignified way that you are facing it.
If I could offer anything, it would be to echo the words of your friend Karen with her Oncology Pharmacist's hat on-absolutely not to worry about the chemo with it's toxicity but to focus on everything else which makes you feel stronger.
Although we've only met up occasionally over the years, we think of you all often and will always continue to do so.

With our love,

Caroline James Alice and Benjamin

Sharon Day said...

Dear Katie
I can't stop thinking about you. It was lovely to see you on Friday, and despite the way you are feeling you made the evening wonderful for every one.
It must be hard for you to look at Giles, Sophie, Sam and Evie and wonder what the future holds. None of us know.You have been such an amazing role model to your kids. Their love and pride in you will be with them forever.
I feel very privileged to have known you now for seven years, and can't ever imagine our BB group without you.
However,you're not leaving any of us yet. Where there is life there is hope. You have touched so many lives, and have so much to live for. Can't wait to see you again. Really hope the pain lessens and your strength grows.
Love as always
Sharon
Ps Would love to help in any way I can.

Anonymous said...

Dear Katie
I wish you didn't have to face into leaving letters for your children....a tough task, but if you do it to the level with which we have come to expect in the beautiful cards you send every christmas, it is truly something the children will cherish forever. I'm sure every other parent who reads your story finds it difficult to contemplate and understand why there is a such a fine line between happiness and sadness and clearly without reasoning as to why we are chosen to follow one or other path. I will continue to pray that somehow those letters will not be needed.
Thinking of you and Giles at this time.
All my love
Bronagh xxxxx

Anonymous said...

Dear dear katie , you are an inspiration to us all. I think of you constantly and talk to my family and friends about how amazing you are at this truly tough time. It is wonderful that you are surrounded by such great family and friends. I think it is a lovely idea to write to your children and even though it may be really difficult I'm sure they will treasure any words from you. I'd love to teach an aerobics class and donate any money that people would pay going to your charity. It would be a tribute to you and what a special person you are. Take care. Lots of love terri ( from Hanbury) xxxxx

Jenny Crewe said...

Dearest Katie
Hard to be positive but I can'help feeling that the chemo just makes you feel so terrible that maybe at least without it, you won't have all those awful side effects and perhaps you will feel better able to enjoy your days with all your nearest and dearest.
With your strength of spirit, you WILL be at Sam's party. I know you may not have much time left with your beautiful children, which must be the hardest thing to bear. So make your time count - I know you will.
Dear Katie, sending you a big hug and kiss. Take care my friend.
Jenny
xxxx

Anonymous said...

Dear Katie,
I'm lost for words - just know that as you take this next step on your journey, the love all around you is like the summer sun - you can feel it without trying.
I can't imagine how difficult it will be to put pen to paper to write to your beautiful children, but if your bravery and grace of the last year or so are anything to go by, they will be an amazing tribute to everything that is Katie. And, hope is still strong. I believe in miracles - I saw so many during my career on the neonatal unit, and if anyone deserves a miracle, it's you.
I'm so pleased to hear you managed to get out, and that your sister and Mum are so close in many ways to you at the moment - that is certainly something to treasure.
Sending love, and positive thoughts,
Nicky Max and Aurelia xxx

Rebecca said...

Katie - it was so lovely to see you today with Marianne. Despite how difficult it is for you physically now, you still managed to be gracious and welcoming - it was just like when we've visited you all the many times before (except that this time we did turn up when we said we would, rather than being rather late!). Hope we didn't tire you out, and thank Giles and your mum for preparing us some lunch- we'd only intended to stay for an hour originally, but it was great to be able to spend a few hours with you. Amelia really enjoyed playing with Evie and all the toys, and she was singing to herself on the way home!
I think you're doing so well Katie at staying upbeat and positive, and not once have I heard you complain about your condition. You are showing such courage in facing all these new challenges, that you are an awe-inspiring example to us all. See you next Saturday!
Lots of love
Rebecca, Danny and Amelia xxx

Dawn (Oz) said...

Katie, you've got so much to be proud of and now you can add yet another thing to your list of achievements - you've managed to make so many of us want to be better people with the example of your courage. Not everyone could share their thoughts and feelings the way you have, and I think all your friends, family and even people who don't know you have been strengthened by it. We were supposed to be helping you, but it shows what an amazing person you are that you have helped us. Enjoy your days with your family, and let them help you get stronger and face whatever the future holds. Sam's party sounds great - no wonder he's excited! Thinking of you all, Lots of love Dawn x

Sara said...

Hi Katie,

Sally got all of the common sense that there was to share for the Griffiths Girls and I echo her sentiments... we are so lucky to have little sisters who can :)

This morning has dawned as the start of a new week (I know that Sunday is technically the start of the week,for all the pedants!!) and this new week is full of new possibilities.
We are still praying for that miracle... but you are the miracle, you know.
Feel a little stronger everyday... as I tell my students, "fake it 'til you make it!" And you will have a great time at Sam's party.
Hold the picture of the self that you want to be in your mind's eye and you can make it happen... be the goddess inside. That is how we all see you :)
Wishing you lots of love, light and happiness, S & A xxx

Anonymous said...

Dearest Katie,

I find it very difficult to put into words how amazingly brave you are with such tough times ahead of you. You have always treated your illness with such strength and amazing bravery (sorry, the words 'amazing' and 'brave' always come to mind when I think about you!). Your lovely children will always remember you, as you have done so much to make sure of this, with letters and photos.
I am praying so hard for a miracle Katie and you WILL make it to Sam's party.
Love Sarah, Alice and Charlotte xx

Anonymous said...

Hi katie,
Still thinking of you and am sending all my love.
Here is the ending of a poem composed for me by my friends daughter. It helped me:-
Hope's always there, maybe just out of sight,
But never leaves us, through the day or the night,
So when you feel lost or lonely or low,
Just call out for hope, hope refuses to go.

Keep hoping Katie.
Chris(Karen's Mum)

Anonymous said...

Lovely Katie -we are wanting, praying, demanding that you have the time you want and will never give up hope. Focus on yourself, breathe deeply and try not to worry about the children - how can they not be all right when they have you and Giles as parents? - all that strength! Remember that you are still the leader. Love Pam and Gary

Julie Ball said...

Hi Katie, its Julie Ball here, Aimee Ball's mum. I just wanted to let you know that I have been reading your blog and wanted to tell you about a lovely dream I had, we were on the Isle of White, and we met you at a beautiful restaurant on the edge of a cliff looking out to sea. You were with Giles and the children, the sun was shining and we were looking out at the blue sky, sea, sand and sunshine, it was so calm and serene, we were all so happy and at peace. I hope it meant something, who knows what but it felt good. We are all thinking of you and the strength, bravery and determination you have found is astounding. If Evie would like to come and have a playdate with Ted at anytime she is welcome, he is quite a hit with the ladies! I really would love to see you down at the school with that beautiful smile, one that could light a room. I know you have a tone of support and would like to join the ranks offereing a hand, or anything you, Giles or the children need.

All our love
Julie, Gary, Aimee, and Teddie Ball