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Monday, 1 February 2010

Today and last night have been really poo - quite literally. It has flooded out of me all night long and I think we have more of the same in store for us tonight! Sorry - this is probably too much information for many of you but the amount of work and time taken to clear me up is just rediculous! I'm still coming to terms with the lack of dignity in all this. We have one frozen (ruined) duvet out on the line, binned pillows and knickers that have been cut off me. We didn't sleep till 4am last night - so have both been spaced out today - and I'm still exploding everywhere! I only know it's happening by the smell and the rumbling noise! At least the pain has been better. Jane has been here for 15 hours today - helping out. She is a saint! I don't know what I'd do without her - and Giles, of course.
The palliative care consultant visited us today with a plan of when the pain gets bad again. There are other options before a syringe driver is needed - which is great. I don't want to be too drowsy to enjoy my family by having one. Apparently methadone is worth trying for the nerve pain - so that's next.


Anonymous said...

Dear Katie- I am not sure what to say except I am so sorry that you have all had such an awful24hours- fingers crossed you had a better night.
So glad you have been able to discuss your pain management and have a plan.
Thinking of you all
Clare Ian & Co xxxxxxxxxx

mazzelsha said...

Dear Katie, I'm so sorry to hear about your illness (through a mutual friend) & my heart really goes out to you, my partner was in stage 4 a year ago & we know how hard it is to cope, but your blog is incredible, very moving & brutally honest - I admire your bravery & determination. Stay positive & please accept my best wishes & prayers.

Anonymous said...

Dear Katie, Best Wishes and keep strong p x

Marianne said...

Dearest Katie
That's so horrible for you, I'm so sorry to hear that you had to go through that. But I know that neither Giles nor Jane would have minded in the slightest looking after you, they just want you to be comfortable.
I'm really glad to hear about the new plan for dealing with the pain. I hope you have some respite now anyway and don't need it for a bit.
Thinking of you as always.
lots of love
Marianne xxx

Anonymous said...

So brave and so honest, but you have been that way the whole time. Keep fighting.

Nichola (Williams) & Family..x

Anonymous said...

Dear katie, Giles

What can we do to help? Year 1 mums would like to help with what ever you need, we could do some washing, ironing. Shelly rubys mums say's she makes a great sheppards pie, I make a mean beef stew we could pop round for you all.
Please text or call 07956291027.

Michelle (Olivers mum)

Liz said...

Hi Katie

I had so enjoyed reading about your Lady Gaga night and seeing the photos.( What a fabulous family you have.) and now this!!

Glad to hear that the pain is better and that you have options.
Is Sophie planning more extravaganzas? She looks great in the pictures.

Love Liz

Anonymous said...


I have been looking at that wheelchair and it is the same colour as the go karts for Sam's birthday. I think I will be able to modify your chair so you can be on the track with them! Looking foward to seeing you at the party, keep fighting

Charles and Carol

Anonymous said...

Dear Katie, How amazing brave of you to still muster up the courage to admit how it is, you are one very amazing lady and I wish you the best form of pain releif for a peaceful sleep.
Much love to you and ou wonderfully supportive family xxxxx

Anonymous said...

Dearest Katie, As a mum, you have spent the last 8 or so years clearing up your childrens various accidents so I wouldn't worry that anyone minds clearing up after you for a change!! Let me know if I can bring anything for you on thursday xx

Anonymous said...

Oh Katie how exhausting and demoralising for you. Indignity doesn't come into it - you would be happy to do that for anyone in need, I know, let alone a beloved family member - and consider it a privilege. If the pain can be sorted, so can the poo! Fingers crossed for you today. Stunning, brave and funny Katie - in a nutshell! Love Pam and Gary

Anonymous said...

oh dear Katie - poor you.I do hope that you move on from the poo episode rapidly - for all concerned!!
I am pleased to hear that you have a plan and some options for pain control.I thought you must have had a strong reason not to have the syringe driver.At least its also an option if and when the time feels right for you.
Hope you have had peaceful day.

Love Andrea

Anonymous said...

Dear Katie,

Sharon & Rob Poolman told me about your blog and your brave fight - I remember you from Sharon's hen weekend in Dublin (and still have photos of you with Guinness foam on your nose....)

Your blog is inspirational, and has made me think a lot about life over the past few days (I have three children the same age as yours). None of this is much help to you, but thank you anyway. You have made me think, made me cry, made me hug my kids a bit more.

You and you fabulous network of friends and family will be in my thoughts and in my prayers.

God Bless.


Anonymous said...

Please God they get your pain sorted. Do not worry about poo, its all natural and you would do it for any of yours.
Much love and God bless.
Cathy x

Anonymous said...

So sorry to hear about your disturbed night. Hope all been better today and you got to catch up on some sleep. Your honesty, bravery and postive outlook is outstanding and we can all learn so much from you.
Loved the photos from the weekend, looks like you all had a great time.
Your always on my mind and in my prayers.
Lots of love terri  xxx

Christel Ainge said...

Dear Katie,
Please don't feel the need to apologize for what you're writing on your blog.That's what it is there for, getting things of your chest and sharing with us. I do understand your frustration about the "dignity" aspect of things but as we were saying when I saw you last week, the district nurse is there to help.

I do agree with the comment Michelle made earlier. We would be very happy to help with concrete aspects of your daily life, like food, picking up your children, washing etc...Please do not feel too proud to ask. Meanwhile Giles, your sister and your mum could have a well deserved rest and spend quality time with you.

I was at Hartham swimming pool this pm, chatting with Nicky (Luke's mum) and we were reminiscing about the friday afternoon swimming sessions that you organised, when Sam, Elise and many others had great fun together. Do you remember Margaret, the swimming teacher, telling us when we were in the water with the children to make them blow bubbles? They did not want to know! All they wanted was 30 minutes of fun and splash. Meanwhile, we were too busy chatting to really take any notice of their progress (lack of)!

I hope you have a good night and a quieter day.

Celia said...

Loved the Lady Gaga pictures. What fun. Probably far better than the real thing would be anyway, and the children could join in. Also lovely to see Chris and Ursula at your house. Hope sleep comes easier tonight and you have less disruption. Love to you all as ever. I will keep willing the pain to go away and happy days for you. love from Celia