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Thursday, 28 August 2008

Today was the big trip to the Marsden. After always leaving there on a low I was expecting the same. With my struggling post-operative body the anxiety beforehand was even harder to control. Whilst in the waiting room I thought I would pass out if there was any more bad news.
But it wasn't as bad as I expected.
The histopathology report wasn't ready so all my worry about the number of lymph nodes (glands) affected and the correlation between that and the risk of recurrence wasn't dealt with. But that is not really the issue. I know there were 6 enlarged lymph nodes which puts me into stage 3, where stage 4 is the worst. The point is that the management now is pretty much the same irrespective of the stage. There is nothing much more that can be done and it is just a question of monitoring for further spread.
I have to consider whether I want to take part in a trial which would give me a 50-50 chance of having an infusion of a monoclonal antibody (Bevacizumab/Avastin). It would mean an infusion every 3 weeks for a year if I get randomised to have the active drug.
In terms of the prognosis no one really knows who does well and who doesn't. Certainly I don't think it would help me to dwell on how low a percentage make it to 5 years. All I know is that some people do make it and with that in mind there is always hope.
The surgeon is pleased with how the scar looks and the recovery of the nerves. The pain is more manageable but still worse over night. My voice is beginning to improve although I still can't raise it at the children! Giles is becoming a better mother than me although I have noticed a few strange things - the kids drinks in the bath to try to coax them into it, second trip to Macdonalds in a week and odd combinations of clothes.
Thanks to everyone who has given us ready meals, chocolates, flowers, offers to help with child care, CD's, cards, comments on the blog etc. It has kept us going.
I have said enough for now - I am going to eat something that doesn't involve too much chewing!


Marianne Gaspar said...

Hello Katie
Thanks for taking the time to let us all know - it must have been very hard to write, but overall, if I've understood properly, it sounds quite positive. What a shame that they didn't have the report ready for you. When will you have to go back for that? I hope you're having a good rest now and found something yummy to eat. I laughed at your verdict on Giles' new tricks of the trade re bathtime etc - dads certainly have a different perspective on these things! It is hard to let go of these intensely mum-centric things, but I suppose that children like and need both their parents' approaches.
Anyway, lots of hugs and sleep tight! I know that you will need all your strength to continue.

Anonymous said...

Dear Katie,
We are pleased this day is passed and maybe the news is better than we feared. We are glad that the pain is lessening and you are begining to feel more like your previous self. Do not rush things and gradually you will recover your strength and voice. Giles I'm sure will be able to manage the children with your guidance and his own dress sense has always been questionable so he is applying similar principles to Sophie,Sam and Evie.
Try to do something nice each day that you can look back on and take care. Start to plan a short holiday.
All our love
Ursula and Chris xxx

Dawn said...

Hi Katie, you've had everything scanned at least twice by my reckoning and you're clear. We'll all be crossing fingers that it stays that way. The worry and the operation has been bad enough for you all.
It was lovely to speak to you the other day and I'm glad your voice and strength are improving. Keep taking the drugs for the pain - you're a professional, you know the drugs DO work!
And a big well done to Giles for taking over bath time. What do matching colours matter, as long as trousers end up on legs, and tops end up on arms... ;^) Katie, you'll be back in charge before they start getting picked on at school.
Take care and don't over do things.
Lots of love, Dawn

marie said...

Dear Katie.... really glad that the news was better than expected . I had to laugh at Giles's bathtime lures!!It reminded me of the times I left james in charge of our 3 boys. It was the meal combinations that were strange eg spaghetti bol, roast parsnips and onion rings!!I think U/C idea of planning a short holiday is a good one... speaking from experience nothing better as a morale booster. We had a very nice couple of days in Wells next Sea in Norfolk.Beautiful spot with a lovely beach for the children and not too far away.Lots of love Marie and James xx

Mum said...

Darling Katie,
You were very low when you left the children with us yesterday to go for the dreaded prognosis and you were exhausted when you returned but you hit on the right word when you said that you still have 'hope'. This is the most important fact to hold in front of you and as you regain your strength you will feel more able to be positive.
Yes, now that Giles has been given more leave, it would be a very good idea to have a break away from home for your family; you could all do with a change of air!

You have shown tremendous courage through all this and Giles has given wonderful support; we are proud of you and thankful for both!

All our love as always,
Mumxxxx and Dadxxxx

Angie said...

Thank you so much for updating us all so soon. It´s annoying they didn´t have all the results for you. You are absolutely right to focus on those who do well - it is hard to stay positive when faced with such a hill but I´m sure you will manage it. I´m loving Giles´ bribery and nutritional corruption. Challenge him to do plaits in Sophie´s hair - that would certainly have Paul diving for cover! Love, Angie

Nicole said...

Dear Katie and Giles

Anxious I read about your report and I could really feel the way it was for you two. But hope and love are important and together one can achieve so much. All the good advise and wishes do come from all our hearts - but in the end you have to cope with it all. I have a lovely friend who was very ill for 7 years and has come out of it more beautiful and healthy than ever. She did a nice thing - every morning she put 5 beans in her pocket and with every happy moment during the day she put one bean in the other pocket. She found out that no day passed by without her not having had unforgettable moments, laughs and smiles. Perhaps this helps. Love to England and the family - we are all thinking of you a lot. Nicole

Annie said...

Hi Katie

it must be so very hard at times. keep your positive vibe.

thinking of you
love Annie

Celia said...

Good to see more on the blog. I'd been thinking of you and Giles on 28th as remembered it was the day to go back to the Marsden. Good stuff so far. Glad scar looks good. Rather a lot of goods! but long may that be the case. Love to all Celia

Anonymous said...

Katie -well done, the immediate hurdle over and your focus on the the positive -absolutely right and the way forward. Do you know how inspiring you are?Once the pain has receeded you will be in control of your life again including bathtimes! September and October will be beautiful so enjoy. All the family deserve an indulgence! With Love Pam and Gary

Nick said...

Hi Katie and Giles,
Glad to hear you have come through the surgery and are recovering. Hope this continues so ok. That drug trial sounds hopeful. Hope last out of pandora's box can be a great pillar-like Giles becoming a great mother- I know he can do it. To think of the things I now do with my single parenting and bath time can be particularly chaotic with my two esp when Aurelia though she did a bottom burp in the bath and whoops!
Really wish you the best.

Regards Nick B

Sara said...

Dear Katie and Giles,
Thanks for all of your info on the blog... we are keeping up to date here in Bonnie Scotland.
It sounds like things have been very tiring for you - we hope that it continues to get a liottle better each day.
Interesting fashion combinations are what Dad's are famous for... it is character building! ;o)
Wishing you and the kids lots of love and hugs - Sara xxx

noah farrah robert and julijana said...

Hi auntie Katie, I hope that you get better really fast so that you can have nice time having fun with Sophie, Sam Evie and Uncle Giles
Lots of love Noah xxxxx

Sue Patterson said...

Dear Katie, Giles and lovely family,

Just to say I'm thinking of you all.

Love and regards
Sue Patterson (Eve Receptionist @ The Hertford Clinic)

Clare Ian and family said...

Dear Katie and Giles

We were so pleased that the 28th has past and that the news left you both with hope- the positive attitude you both have will help fight many battles.

We are thinking of you all and please remember we are now home and very happy to help in any way.

With much love from us all
Clare Ian and Co xxxxx

dan said...

Hello. :)

Well, following on from my other post, I managed to break the internet as well and ended up looking at a page that never updated. Oh well. Hope things are going OK this week Katie and that you are feeling a bit better. x