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Friday, 15 January 2010

Still nothing much has changed. Today has been particularly exhausting and I've been in bed for much of it! The hospice nurse yesterday said I could be this exhausted for up to 6 weeks so I'm pacing myself. There's one good thing about this - I really don't need my legs to work any better while I'm just shuffling about the house. They can take as long as the exhaustion to change. But then there's no guarantee of any improvement. I'm now off the steroids and my back is more painful again but not in a such a severe, relentless way - more a chronic back pain. I'm on the really strong opioids now - and that has taken me a while to get my head around with all my palliative care training - and thinking it is so end of the line. But what really matters above all else is less pain - because more is so soul destroying. So I think in every cancer journey there are all these hurdles to overcome and acceptances to make. Now more than ever while I'm not feeling well it's about getting through each day and the worries about the future are much less - so in a way that's much easier. If things do deteriorate in the future I know I'll be made as comfortable as possible. I'm allowed to claim for a disability allowance because my life-expectancy is about 6 months. This doesn't really concern me as much as it would have done a few months ago. 6 months seems like a hell of a long time at the moment! I think of all the people I was in hospital with and how inspirational I found some of them. All suffering in different ways but admirably getting though each day. Caroline, 43, who had young children like me was the closest in her situation to me, having an inoperable cancer. It was good to talk. She helped me get through the first few days in there. (I've always been the youngest when in.)
And still I find this all so surreal. I can't believe it's happening to me/ us. I can't imagine being dead (but then you're not supposed to imagine that - are you!) So I tell myself while my body switches off (yet my mind doesn't), that my body is just re-booting. The melanoma is stabalizing now. It's not spreading any more. Time needed to rest is valuable. My immune system needs it. I'm still so happy to be home with the family with my mum coming up to help look after me and Evie while Giles is at work.


Anonymous said...

Dear Mrs Pratt

I just wanted to give you little update on Sam's work this week. Having read your blog this evening I just wanted to let you know that my thoughts are with you every single day, wishing you well.
Sam has written his report on Bats, his area was 'Bats In Danger', he wrote some really interesting facts and presented them to Year 1/2 - did you know that over a million bats live under a bridge in America!! So Sam tells me.
Sam enjoyed music this week listening to the pulse of the music - we paced around the classroom to varying beats. We also had fun creating new dances using flash cards 'Freeze', 'Bounce' and 'Melt'. In Maths Sam has enjoyed learning about weight. Next week we will be learning about time and also displaying information in graphs and tables. Sam is really doing well in maths and enjoys a challenge, when we warm our brains up ready for maths Sam always answers the tricky questions that I put to him. Sam is settling back into the school routine and seems happy and involved in his work. He is enjoying class discussions and always joins in and I often catch him smiling about something - usually something silly that I have said!!

Best wishes
Mrs Saliah

Anonymous said...

Katie, you are so brave, I look for your updates daily and ask Amanda how you are. I am always thinking how could this happen to someone so young and so much to live for. It has actually made me change my thinking about life and how precious it is. Your family and friends are a great support and sure this is helping you. I am not very good with words, (so nothing has changed from school then). Sending you a hug from our family.

Nichola, Simon, Maddison, Sonny & Evie..x

Anonymous said...

Your body is zapped of energy while trying to fight off the cancer. So relax and give it all the energy it needs.
Max loves the pictures you have posted of the kids, their drawings and santa. He makes me laugh. This morning he said "Let's play hide and seek, daddy you hide and then you will be sick" I had to explain the meaning of seek!
Love, Karen

sandra said...

hi katie i have never written on a blogg before as im hopeless at computers,must be an age thing!so here goes,hope this gets to you as i just wanted to let you know that i think of you every day and your amazing courage and to still keep your sense of humour is amazing.im hoping you are in less pain so you can enjoy your lovly children and all these presious moments to savour.as a parent i also want to send my good wishes to your mum and dad .we should all strive to be loved as much as you clearly are and enjoy each moment of every day.lots of love sandra from castlegate.x

Pat Wordley said...

Dear Katie

My name is Pat and I live at 30 Bradgate and have done so for over 20 years. I am therfore a neighboure of your parents. I do not know you but know of you as yor mum taught my children, Amy & Ben, in Cuffley school and your sister Jane used to baby sit for me. I heard your latest sad news just before Christmas but because of the festivities I did not get around to reading your blogg until early this week. At first I only read the recent entries. I then spent a couple of days contemplating what I had read. I then went back and read the whole of your blogg. All I can say is that you are one amazing lady. You have deisplayed courage, fortitude and no small measure of robust spirt and a large quantity of humour in the face of extreme adversity. All my body parts are crossed for you. You are in my thoughts and in my prays. I have already told your mum that if there is anything I can do to help she has only to ask. With very warm wishes Pat W

Anonymous said...

Life can be so unfair, but you are amazing. You've been strong and sensible, still enjoying life and never bitter. I check your blog everyday. Please let the pain be manageable and allow you to enjoy life and your beautiful family to the full.
Thinking of you
Catherine Wakelin (Was Grainger)

Anonymous said...

Hi Katie

I knew you at baby group in Hertford when you went with Sophie. One of my best friends children go to the same school as your children and that's how I heard about your illness.
I started to read your blog to see how you were doing and coping. I am full of admiration for your fight against your illness and the way in which you are dealing with it. With a child the same age as Sophie and a younger one I really feel for you and can't imagine being as strong as you.

You clearly have a very special and loving family giving you all the support you need.

I just wanted to wish you well.

Anonymous said...

Thank goodness for painkillers!! Keep yourself topped up so you can enjoy your gorgeous wee chidren and your gorgeous (not so wee) hubby!! Happiness is sooo relative and you put so much in to perspective for all of us.Thinking of you all every day.
Love Hollie and the Fair Isle clan xx

Anonymous said...

Hi Katie,
You dont know me but I heard about you through a friend of a friend and since then I have been following your blog.
Obviously I realise that no words that anyone types can make your cancer cells shrink any faster... (although we all hope it could) but as you know its the way you are dealing with things and your precious children around you that makes you such a very strong person and your courage and strength is a huge influence to us all and a lesson to learn from you! We all take things for granted far too often, or moan about snow! why? We all can be very selfish idiots at times that complain too often LOL. I have 3 young children myself and every moment I look into their beautiful eyes although they shed a tear, knowing they have happy souls is whats most precious to me! No matter what they will have to deal with, knowing they have a good teacher to give them a head start is what counts and makes a huge difference in their lives for the future and to have a mother like yourself... I can assure you is one in a million and I would love to meet you and have some of that good teaching rub of on me!
Anyway...you are such an inspirational lady and I am sure it is a great pleasure to your friends and family to know you and have an amazing person in their lives! I wish you well and really pray you will feel as well as can be each and every day, thinking of you and your family! Lots of love xxx Think Shrink

Jenny Crewe said...

Dearest Katie
You are touching so many people with your courage and yet none of us can really help you. The one thing we all want to be able to give you, we cannot.
What we can do is send you positive thoughts and pray for you, which I know so many people are doing.
I hope you manage to keep the pain under control and enjoy making more wonderful memories together.
I still cannot accept that this has happened to such a beautiful woman who is so vibrant and full of life. Throughout time people have tried to explain life and the ups and downs we face, but there are no answers.
Just concentrate on the now and each day one at a time as you are doing.
All my love

Anonymous said...

Dear Katie,

i am always moved when I log in to your blog - but the words and thoughts on this page today are quite remarkable - I echo every sentiment and double every prayer, and wipe away my tears of humility in the face of your grace and strength
lots of love
Nicky Max and Aurelia xxx

Mum said...

Darling Katie,
I haven't seen you for nearly two days and I miss you so much.
I really love being with you, helping you in whatever way I can. You are such a warm and gentle person and never once have you complained of your situation although we have shared the extreme sadness of it.

I have been reading the comments on this post and realised that this world is full of wonderful people who are not thinking about themselves and their problems but of you and yours. If there is to be any meaning in all this surely it is just this. No one feels better by being selfish or bitter but a few words of encouragement and support, the many world-wide prayers being said for you, go such a long way in making you feel like facing each day.
I was very touched when a Muslim friend of yours gave you a Bible last week: doesn't this show that faith too is universal. I should like to join hands with all your friends and encircle you in the love they all have for you.

When you were born I was so happy, you were the child I had always longed for. Dad brought us home and the music on the radio was that of 'The New World Symphony' by Dvorak, so fitting. You were and always have been (along with your brothers and sister), my world. When you first went to school I had to write a comment on you.... "Katie is the most precious person I have had the privilege to possess" (not negating Robert of course!).
I always feel that it has been a privilege for me to have been your mother; I knew you were someone very special and you have proved that over and over again.

I love you with all my heart and I know Dad echoes that too.
Don't lose that bit of hope though my darling daughter!
Mumxxx and Dadxxx

Diana said...

Hi Katie

Just wanted to say that it was really good to visit with you last week and to see you looking so serene and positive!

It was lovely to have some time to talk and at the risk of embarrassing you, I have to say that if only everyone could have your state of mind, the world would be a much happier, nicer place!

It was also nice to meet your mum and I can see where you get your looks from - she is doing a great job of looking after you, as is Giles.

Keep enjoying those lovely times at home and see you soon.

Warmest wishes

Fiona said...

Dear Katie

The words in your blog are so brave and inspiring. I am sure it takes the most amazing amount of spirit and courage to write down these thoughts and emotions.

Being pain-free must be achievable in this day and age, so I hope the opioids are doing their job and that you will regain some energy soon to make the most of every day.

I am thinking of you, Giles and the children and indeed the rest of your family who are helping you and loving you.

Love Fiona x

pat said...

Dear Katie
Keep resting and enjoy the children we pray for you every day and think of you all. Hope the sunshine today made you feel a bit stronger. Thinking of you and your families all the time. Keep the courage going.

Much love Pat xx

Sara said...

Hi Katie,
Thank you for your message - I will have a bit more time to reply tomorrow as we have just arrived home and it is now 01.00 here.
Glad to hear that there has been no further spread... hopefully that is the start of a more positive phase.
Andy would like a copy of Sam's power point presentation on Bats... sounds very interesting - you must be so proud :)
Lots of love to all of you - keep thinking good things,

Anonymous said...

Dear Katie

What can i say - I can only reiterate what i have said before in that your bravery and strength amaze me.
Sure, you must find this surreal.I also can't believe this has happend to you ,Giles ,the children your family.It is so cruel.
We, at Castlegate miss our wonderful colleague.
I paricularly miss you as a great resource with your enormous knowledge and expert advice.You were always kind,helpful and calm even when you had a pile of your own work to get through!This clearly is a marvellous trait of yours. You have conducted your self throughout this illness as you have done so throughout your life.You truely are a genuine lady!
As you say the body feels like it needs a reboot - so just rest and continue to enjoy those precious mornings with your mum and Evie and those other times with the rest of your family and friends.
It is clear your brain,mind and spirit are as strong as ever - keep going as difficult as it is.
I pray the opioids are taking away the pain.

With love Andrea

Anonymous said...

Dear Katie

we are thinking about you every day and are praying for you. Your words and thoughts are awe inspiring. We hope the pain is diminishing and you are enjoying time at home with your wonderful family. Keep your positive thinking going.
Love Steve, Julia, Clare and Chris XXXX

Anonymous said...

Just wanted to say thinking about you every day and praying for you. You are so brave and inspiring. Let the pain be manageable so you can enjoy time at home with your wonderful family. Keep your positive thinking going.

Love Viv

Anonymous said...

You are the best mummy in the
world!Hope you get well soon.

Lots of love , Sophie, Sam and
Evie xxx

Anonymous said...

Dear Katie
We check your news daily and you are still amazing us with every entry- your bravery and attitude is incredible.
We do hope the analgesia is continuing to keep you pain free and you are able to enjoy your very precious times with your mum and family.
With all our love
Clare Ian and Co xxxxxxxxxxxxxx

Anonymous said...

Wow, your mum's message just blew me away. So that's where you get it from!
Still thinking about you every day!

Anonymous said...

Dear Katie
Yet again your words and those of your friends and family remind us just how precious life really is. If everyone had half the strength, courage and kindness that you have the world would be a better place.

Thinking of you

Love Nicola M

Kate Hulme said...

Hi Katie
You may not remember me, but I know you from Sandwich Street days. Nick Cliff passed the link to your blog onto me. I read it all from start to finish today, and I'm so horrified by this terrible thing that has happened to you; it's hard to believe. You look even more beautiful in the photos than you did as a student, if that's possible and your children are absolutely gorgeous.
I'm amazed and impressed by how much humour and honesty you've brought to what you're going through and I'm sure your blog will help lots of people cope with difficult times and inspire other people in many different ways.
Everything crossed for the treatment you're having at the moment.
Kate x

Anonymous said...

So glad that you are home and tucked up with your lovely family where you belong. Your supporters continue to gather force! You are quite remarkable. Love from Pam and Gary

Debbie said...

Dear Katie
I am so glad I met you and your wonderful family recently. I am thinking of you of course. Even my mum can't stop thinking aboout you XXXXXXx