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Wednesday, 20 January 2010

Had a really full day at the Marsden. We only got home at 8pm! My sister, Jane met us there too which was really useful seeing as she's an Occupational Therapist. It was so nice to get some fresh air and go out in the car though! So the outcome: the MRI scan shows no new tumours so it's just the same one that's grown a little bit more and causing all my newfound disability. The radiotherapy didn't work too well! Nothing more can be done for this. The registrar we saw today was going to discuss with my consultant any other options and get back to us. Surgery is really unlikely to be an option because it may not improve things at all. I really want to go ahead with the planned 2nd cycle of chemo next Wednesday but apparently they wouldn't normally give chemo to someone with so much disability because of having to deal with the additional side effects and fatigue - when they don't really expect the chemo to do any good anyway! But how do they know it hasn't slowed down the growth a tiny bit? Yes it will be difficult to manage diarrhoea when I need help just getting onto a comode! I'm not weeing properly and if by next week I'm using a catheter they won't due to the added infection risks. Then there really is nothing more they can do and I'm at the step that I am dreading. But then I think if we had been told that there was a new tumour that they could try radiotherapy on that wasn't there 3 weeks ago it would be worse because there'd be no point giving more chemo because it's obviously had had no effect. In the end what will be will be. No point in worrying about it.
Physio want me transferring in a wheelchair rather than trying to walk with a frame (my feet drag, my knees buckle and unless I can see them I haven't got a clue what position they're in) but until I get all the different mobility aids delivered its so extremely difficult at home. The stairs, in particular are a nightmare! It's a bum shuffling exercise with Giles making sure my leg is on the right step before I hoist up a step with my arms and then he has to check my numb bottom is in the right place. But the worst bit is trying to get up from sitting at the top with my painful back! Getting a quote for a stair lift tomorrow and hopefully it will be quick in arriving and solve some of the problems although not all as Evie will be at risk of falling down the stairs as we'll have to remove the stair gates. So for the next 2 days we have to become confident with the equipment when it arrives and Jane - bless her, along with my parents and Giles - will be around to help. I'm concerned for Giles, though. He's so very tired with everything he has to do for me and the children. He really needs a good night's sleep and I need so much intervention in the night he's not getting it.


Pat Wordley said...

Dear Katie

As I said yesterday words fail me.

On a practical level I am in Hetford two/three times a week. So if you want anything collected/delivered just call me.



Marianne said...

Thank you Katie for managing to give us all a full update when you must be particularly exhausted after today. It is great that there wasn't a new tumour. It's incredible that you are writing so calmly about all of this. You still have so much fight left in you and you can continue to use your amazing internal strength to keep beating it. Hoping you get a better night's sleep tonight - and Giles too.
lots of love
Marianne xxx

Anonymous said...

I feel so far away and only wish I was able to help in some way. I hope you both get some sleep tonight and it is the first step to you both being able to cope better. So sorry to hear how hard day to day life has become.
All my love
Bronagh xxxx

Rebecca said...

Katie - I must echo Marianne in saying thanks for such a detailed update after such a full-on day at the Marsden. It sounds like your incredible strength of mind is enabling you to tackle each new issue you have to deal with, with grace and courage. I will be keeping my fingers tightly crossed that you get the 2nd cycle of chemo next week. Lots of love to you and Giles and all your family.
Rebecca xxx

Karen said...

My dearest Katie,
Sending you much love, hope and analgesia.
Love, Karen

Anonymous said...

Dear Katie and Giles- I am all out of words to describe my feelings- you never cease to amaze me with your incredible attitude and determination.
You are constantly in our thoughts- even more so yesterday.
Fingers crossed the deliveries arrive today.
All our love Clare, Ian & Co xxxxxxx

Anonymous said...

Hi Katie,

Melissa sent me the link to your blog and I just wanted to say that I am sending you all my positive thoughts and energy. Your children certainly have a Mum to be very very proud of. p.s. you haven't changed since school - still as beautiful as ever!
lots of love,
Sally (now Ward, was once Smith!)

Anjella said...

Dear Katie

Your courage and determination in the face of adversity is a truly amazing quality and you have it in abundance.

I have been thinking of you daily, and especially yesterday - my goodness what a day it must have been. And yet you were so determined to write such a detailed update, so that we may know too.

I am sure that everyone who reads this blogg must pray for you and your lovely family as I do - so keep your massive determination going & I'm wishing speedy thoughts for the equipment that you need to help.

Remember - YOU ARE INCREDIBLE and a huge inspiration to all around you.

Wishes you lots of pain relief and rest!

Anjella & family

Anonymous said...

Dear Katie,
Just want to let you know we are thinking of you and hoping the pain eases soon. Take care.

Sharon and Rob

Anonymous said...

Dear Katie

We have never met but I have worked with Giles as a NP at HUC.
I have followed your blog since your devastating diagnosis and you have been in my prayers ever since.
You mentioned that nights can be difficult and that Giles is tired.
I was a District Nursing sister for many years and now NP. I would be happy help out at night on a Wed, Fri or Saturday night(don't have to get up for work the next day!)If that would be any help at all let me know, I am only in Bengeo.

Sarah Westley x.

Anonymous said...

Hi Katie,

Just wanted to add a note of support. You are often in my thoughts and I follow this amazing blog closely. I too will be keeping my fingers crossed you get the Chemo you want.
Best wishes Melissa (Lara's Mum!)

Anonymous said...

Oh Katie so sorry to hear how very difficult things have become. You respond as ever with such courage and clarity of thought. Let people help if they can with practical things and put trust in them. Everyone cares so very much. You are truly cherished. Be proud of yourself and Giles and the children. Keep fightimg. Love from Pam and Gary

Anonymous said...

You were in my thoughts all day yesterday. Thank you for keeping the blog up-to-date as it isn't easy to find out how you are doing from far away.
How is Sophie doing?
Hope you'll have a good night tonight.
Lots of love,

Jenny Crewe said...

Dearest Katie
So many awful things are happening to your body, and none of can imagine how hard it is to endure. Our hearts go out to you.
Your body is just a vessel. The real Katie is the person inside - strong, beautiful and amazing. No matter what happens to your body, you will always be that person we all hold in such esteem.
You are with all of us in our hearts and always will be dear Katie.
I will think of you tonight and pray you get through the dark time in the small hours.
With much love.
Jenny and family.

Sara said...

Oh Katie,
We really hope that you get the treatment that you want... and that it works a treat.
I still can't believe that it is you going through all of this... I know that it is a bit useless but I wish that it could be different.
We feel so far away but if there is anything that we can do please just let us know... London is only a 6 hour flight... could be there in a flash :))
Wishing you lots of healing love and luck over the next few days, S & A xxx

Anonymous said...

Dear Katie,

You are so strong and courageous...
If your Mum or Giles need any help on the weekends please call me & I can pop in to help out. It's no trouble at all.

love LisaX