From Twitter 11-11-2009

• 18:58:33: Jillbrad: All signed up for the new trial, starting Tuesday. Woo Hoo
  

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• 17:58 All signed up for the new trial, starting Tuesday. Woo Hoo #

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From Twitter 11-03-2009

• 22:07:11: Jillbrad: Well it's official. I'm a mutant. Well I have a mutant K-ras so I can't do the trial we were hoping to do.
  
• 22:08:25: Jillbrad: Will see doc on Monday to see which other trial is available so fingers crossed.
  

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• 21:07 Well it's official. I'm a mutant. Well I have a mutant K-ras so I can't do the trial we were hoping to do. #
• 21:08 Will see doc on Monday to see which other trial is available so fingers crossed. #

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From Twitter 11-01-2009

• 00:19:46: Jillbrad: I had a wonderful birthday and thank you to all the lovely people who sent such kind wishes. It made my day!
  
• 00:23:52: Jillbrad: @SmilyLibrarian @NicolaMcNee @MichaelStead @AidanBaker Had a wonderful Birthday. Thank you all for your good wishes!
  
• 00:25:09: Jillbrad: @libram @Ali_Holder @vickya63 @karenblakeman I had a wonderful birthday and was indead spoiled rotten. Thank you all for your good wishes!
  
• 12:41:46: Jillbrad: @JuliefaithRigby Hi Julie, How kind of you, it would ne nice to see you anyway as it's been a long time. We should be around most of today.
  

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• 23:19 I had a wonderful birthday and thank you to all the lovely people who sent such kind wishes. It made my day! #
• 23:23 @SmilyLibrarian @NicolaMcNee @MichaelStead @AidanBaker Had a wonderful Birthday. Thank you all for your good wishes! #
• 23:25 @libram @Ali_Holder @vickya63 @karenblakeman I had a wonderful birthday and was indead spoiled rotten. Thank you all for your good wishes! #
• 11:41 @JuliefaithRigby Hi Julie, How kind of you, it would ne nice to see you anyway as it's been a long time. We should be around most of today. #

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From Twitter 10-28-2009

• 12:51:04: Jillbrad: Sorry about delay in posting but I've been in a lot of pain recently. Hospital yesterday and the new painkillers are great!
  
• 12:52:17: Jillbrad: Sort of downside at hosp was that last scan not good so I'll be moving to a new trial.
  
• 12:53:13: Jillbrad: The best trial available has one criteria they are still checking to see if I'm eligible so fingers crossed!
  
• 13:12:54: Jillbrad: @sammaddin Poor Sam, hope things a bit better soon.
  

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• 11:51 Sorry about delay in posting but I've been in a lot of pain recently. Hospital yesterday and the new painkillers are great! #
• 11:52 Sort of downside at hosp was that last scan not good so I'll be moving to a new trial. #
• 11:53 The best trial available has one criteria they are still checking to see if I'm eligible so fingers crossed! #
• 12:12 @sammaddin Poor Sam, hope things a bit better soon. #

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From Twitter 10-21-2009

• 16:15:43: Jillbrad: No chemo today, partly because my kidney function was a bit iffy (bloods fine after the injection last week). Partly cos I have scan Friday.
  

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• 23:09 Better today after a couple of bad days (don't know why). Hosp tomorrow for chemo if my bloods are okay. #
• 16:15 No chemo today, partly because my kidney function was a bit iffy (bloods fine after the injection last week). Partly cos I have scan Friday. #

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From Twitter 10-20-2009

• 23:09:03: Jillbrad: Better today after a couple of bad days (don't know why). Hosp tomorrow for chemo if my bloods are okay.
  

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From Twitter 10-16-2009

• 10:43:50: Jillbrad: I'm off to have my hair done (cut and colour). While Phil goes to speak at a conference, Sounds like a fair division of labour to me! He He
  

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• 10:43 I'm off to have my hair done (cut and colour). While Phil goes to speak at a conference, Sounds like a fair division of labour to me! He He #

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From Twitter 10-15-2009

• 11:04:41: Jillbrad: Much better yesterday. Went with Phil while he did a short evening course in Surrey. Then out to a chinese dinner (yum yum* with friends.
  
• 12:24:27: Jillbrad: Some loverly lilies I got last week as buds. http://twitpic.com/llltq
  

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• 11:04 Much better yesterday. Went with Phil while he did a short evening course in Surrey. Then out to a chinese dinner (yum yum* with friends. #
• 12:24 Some loverly lilies I got last week as buds. twitpic.com/llltq #

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From Twitter 10-13-2009

• 13:54:33: Jillbrad: No chemo today, bloods low. Not sure if I'm sad or pleased cos this last cycle has been a pretty bad one and now I have a week to recover.
  

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From Twitter 09-30-2009

• 11:55:01: Jillbrad: @vickya63 Yes we flew from Stapleford, down to the QE2 bridge then followed the river and across Essex. Was fab!
  
• 11:57:15: Jillbrad: @CareersInfo @SmilyLibrarian @contrarywitch I had a superb time, was one off (not going for pilot's licence till we win the lottery).
  

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• 11:55 @vickya63 Yes we flew from Stapleford, down to the QE2 bridge then followed the river and across Essex. Was fab! #
• 11:57 @CareersInfo @SmilyLibrarian @contrarywitch I had a superb time, was one off (not going for pilot's licence till we win the lottery). #

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From Twitter 09-28-2009

• 19:11:58: Jillbrad: Fantastic, hour flying lesson. I'm pretty much still airborne as I'm so high on the experience!
  

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• 19:11 Fantastic, hour flying lesson. I'm pretty much still airborne as I'm so high on the experience! #

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From Twitter 09-27-2009

• 00:02:37: Jillbrad: Went to a craft fair at Temple Cressing today and bought some beautiful clothes. Very bad of me but I couldn't resist them.
  
• 17:48:22: Jillbrad: @CareersInfo It's in Essex near Chelmsford. Medieval barns which used to belong to the Knight Templers. Very pretty!
  

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• 00:02 Went to a craft fair at Temple Cressing today and bought some beautiful clothes. Very bad of me but I couldn't resist them. #
• 17:48 @CareersInfo It's in Essex near Chelmsford. Medieval barns which used to belong to the Knight Templers. Very pretty! #

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• 21:56 yes just the 2 of us. Was lovely day but tired today. Hugs Jill #

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From Twitter 09-23-2009

• 00:13:35: Jillbrad: Great day at Leeds Castle today. Was better weather than most of the summer.
  
• 21:56:02: Jillbrad: yes just the 2 of us. Was lovely day but tired today. Hugs Jill
  

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• 00:13 Great day at Leeds Castle today. Was better weather than most of the summer. #

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• 23:53 Had lovely day today going out with Phil, my sis and her beloved. was great fun and I was very well and full of energy. #
• 23:54 The energy is steroid based even though I got very little sleep last night, Hope tonight is better cos I'm getting really tired now. #

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• 23:43 @SmilyLibrarian Took longer than we hoped but all done now, got home, had dins and good chats now ready for bed. #
• 23:43 @JuliefaithRigby Took longer than we hoped but all done now, got home, had dins and good chats now ready for bed. #
• 23:43 @vickya63 @Philbradley Took longer than we hoped but all done now, got home, had dins and good chats now ready for bed. #

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• 02:00 Scan okay, all stable and bloods okay too so chemo tomorrow. #

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• 11:40 Off the the pictures this afternoon to see the Harry Potter #

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• 11:23 @storagebod That's one of my fav breakfasts too! #

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• 18:19 Went to a stream train thingy today. Was a bit disappointing all in all but Phil got a couple of pictures. #

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• 23:35 Treatment went okay today. On my usual steroid jag so probably won't sleep tonight. #
• 11:17 Slept really well last night which is a first after chemo. Feeling great as a result and very happy. Happy happy day! #

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• 16:46 Saw Phil's Brother and his wife today, had a fun couple of hours with them. Hoping weather is okay tomorrow to visit Bletchley Park. #

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• 11:16 @llansamlet Had a lovely time with them. How are the two of you doing? #
• 11:32 Going to visit Leeds Castle today. Hope weather stays okay, it's overcast but warm at the moment. #

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• 10:40 Going out to lunch with some friends today. GastroPub which apparently has great food so should be fun. #

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• 13:15 AS Phil Twittered earlier I didn't have chemo today. White blood cells just a tad low. #
• 13:16 Disappointed to miss the chemo but at least we can take advantage of the good weather and the fact that Phil is off work during August. #

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Scan and chemo

Hi Everyone,

The twitter thing is still playing up so don't worry if there is a delay between posts.

My first scan on the new treatment is okayish, some small growth but no new lesions and the growth isn't big enough to be a worry yet, we are going to do another 3 sessions and then see what's happening.

Had chemo today and that's all okay too.

We had a great holiday in Port Meirion and the new car is a dream.

Looking forward to a friends wedding in a couple of weeks and that's all the news for now.

Hugs to you all.
Jill

Hi Everyone,

This Blog hasn't been updated recently cos the link to Twitter has broken and therefore my Twitter post haven't been updating the Blog.

Everything is fine at our end, I've had my 3rd treatment on the new trial and I'm still getting used to managing the new side effects.

Bought a beautiful new car and going on holiday shortly so all is well in Bradleyworld.

Hugs to everyone.
Jill

• 12:41 First cycle of new chemo Tuesday. Feeling fine today despite no sleep due to steroids. #

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• 12:12 Off to do a bit of shopping. Weather too nice for cinema but not nice enough for picnic. #

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• 20:18 Back from a great weekend with friends. Went to Zachary's naming ceremony and gave the Sweeps lots of silly little toys. Was fun. #

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• 19:42 I was Just going to write about the happy suprise that the polling station was packed but I see that Phil got there first. #

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• 14:01 @llansamlet I'm fine and Phil is slowly getting better. Planted up a couple of pots myself today. Looking forward to weekend away. Hugs Jill #

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• 13:55 Back from dentist, two filling for me and an extraction for poor Phil. We are sad little beasts at the moment! #

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• 21:49 @Valskelton it's Cheltenham that's posh, Chelmsford is in Essex, posher than Southend or Basildon but that's not saying much. #
• 21:51 @sammaddin We did go to Oil and Vinegar, got a couple of vinegars and lemon oil. #
• 21:52 @vickya63 English habit in our house too. #
• 21:54 Man United lost. Happy bunnies in our house! Now if we can just beat Chelsea on Saturday and it will be a wonderful world. #

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• 10:35 @marianjones Hi Marian, not sure if you will be interested but I saw this article. news.bbc.co.uk/1/hi/health/8057785.stm #
• 20:17 @frandowdsofa I can see it on Twitter. Was the test for that or Facebook? #

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• 20:23 @MrMLibrarian no you aren't the only one; I've paid late fees many times. #

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• 15:19 At Dad's tidying and cleaning up as he gets out of hospital later today. #
• 15:21 Finally decided which chemo trial to go for so I now have some dates fixed. Feel better now decision is made. #

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• 22:04 @vickya63 we had cream cakes after the doctor appointment. Lovely! #

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• 15:10 Dentist this morning, doctor this afternoon. Life is a gay social whirl! #
• 15:12 @vickya63 I've got a pretty firm grasp of the pros and cons of both. Just having a problem deciding which weighs heaviest. #
• 18:50 @JuliefaithRigby sorry I missed your earlier tweet. I am changing treatment and still in the process of deciding between 2 treatments. #
• 18:53 @JuliefaithRigby I don't really need to talk it through. I'd love to see you though, what evenings are best for you? #

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• 18:37 Still mAking up mind about next treatment. Luckily I have time as there has to be a delay between treatments. #

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• 15:39 Phil is returning a remains of sandwich I found a hair in. Being a coward and very English I'm hiding in the car. #

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• 17:07 Just had a friend over for lunch; had a great time. Also had Phil's chips and then a delicious homemade cherry trifle for pudding. #

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• 12:11 Sorry been quiet recently, lots to think about. #
• 12:12 Still trying to decide which of the 2 trials I'll sign up with; both have drawbacks and advantages. #
• 12:14 Questions for the clinic on Monday before I make a final decision. Also seeing the Marsden hairdresser, since I'll prob lose hair this time. #
• 19:58 @sammaddin I saw it in the flesh when she dropped in on us. Is lovely! #

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• 10:14 Off to hospital this afternoon to discuss what my new treatment will be. #

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• 12:59 @twisteddragon pic worked and it does look cold to me too. Have a lovely time. Hugs Jill #
• 16:02 @llansamlet Thanks Eric, I have some more to put up when the connection probs fixed. Poor Phil is going demented. Hugs Jill #

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• 23:13 Put up some bluebell woods pictures on Flickr. tinyurl.com/5zmyof #

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• 17:23 Just made fruit jelly and listening to the Everton game on the radio. #
• 18:01 Everton win so we have a very happy Phil and Jill. #
• 20:46 @WitchesGate it should be ready tomorrow. You live near Essex, UK? #

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• 14:35 #cilip2 Phil Bradley says - Thanks to the CILIP Council and that they are critical. #
• 14:36 #cilip2 PB says - remember the people who aren't here as their organizations don't allow access. #
• 14:38 #cilip2 PB says - the tool is not important, it's about a state of mind. We can make mistakes and then move on. #
• 14:41 #cilip2 PB says - content is less important than the conversation. We have to go where the conversations are. #
• 14:44 #cilip2 PB says - I'm hoping CILIP will be a "good example" not a "horrible warning". CILIP should embrace change. #
• 14:47 #cilip2 PB says - I want CILIP to be a support to the members in embracing new tools and promoting then with their organizations. #
• 14:49 #cilip2 PB says - important to engage with members in a whole variety of ways. CILIP already using Blogs. #
• 14:52 #cilip2 PB says - CILIP communities, why do you have to log in. Hard to use. #

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• 18:11 @twisteddragon yes got your direct message in email. You are getting the hang of it. Hugs Jill #

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• 17:37 Scan results all okay. No change since last scan so all stable and can continue with current treatment. V good news! #

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• 11:35 We are making the most mega trifle today. looking forward to eating it already! #
• 13:24 @vickya63 We just finished it and it does look lovely, Fruit and sponge in jelly with custard and cream, finished with crushed choc flakes. #
• 16:37 The woods are full of bluebells. twitpic.com/41hws #
• 17:05 Just about to break into the trifle. twitpic.com/41jpr #
• 17:14 @sammaddin we'll make you some when you're better. #

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• 10:45 Feeling better after a couple of bad days. Scan results late Monday so keeping my fingers crossed till then. #

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• 08:50 @JuliefaithRigby So sorry you haven't been well. We missed you at the Eastercon bit it went well for us apart from that. Hugs Jill #

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• 19:06 Home from hosp early today; set a new record for finishing time; 2.30 plus record for drive home so we got in at about 3.30pm. Result!!! #

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• 18:46 Everton won against Man U. Fantastic!!!! We are in the final. So happy!!! #

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• 09:34 Just finishing breakfast in a motel. Thank goodness we have a signal here; I thought Phil was near the edge. #

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• 15:53 At the con, sitting in the bar chilling at the moment. Phil's pictures hung and he's doing talk tonight too. #
• 18:42 @sammaddin You are rude girl. I like that in a person! Hugs Jill #

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• 09:53 Off to have my hair washed and blow dryed. An indulgence but I can't shower until I've been disconnected from the chemo pump later today. #
• 09:54 Then the distict nurse will come to flush and disconnect me and then... we are off in the car to Bradford for the SF con. Hurray!!! #

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• 17:12 Couldn't get a signal at the hospital but everything okay and we are home now. #

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Hanningfield nature reserve

Hanningfield nature reserve
Originally uploaded by jillbraduk

We went for a walk the other day; it was beautiful so I couldn't resist taking this picture,

• 00:49 @vickya63 I remember Pycho Cat very well and fondly (he never ever attacked me, everyone else including Phil but not ME) #
• 00:51 @cclibrarian Beautiful pattern you are making there, I'm sort of envious but I'll finish my socks before I start another pattern. #
• 10:41 Just gonna knit a bit of sock before friend arrives. I'm not getting obssesive honest. Just slow knitter. #
• 15:45 Phil showing somebody Twitter. I'm knitting. Not an addict - honest. #
• 17:31 I have a sock. Now I just have to see if I can repeat it to have a pair (or I could just cut off one foot?). twitpic.com/2rnpb #

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• 15:50 Visiting friend with new kittens. They are sooooooooooo cute. I wants one. #

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• 12:05 Yesterday I had my hair done and then went to my knitting class, My first sock is growing will post a pic shortly. #
• 13:17 Picture of sock under construction. twitpic.com/2oezp #
• 15:59 Out for walk, now sitting and watching a goose. #
• 17:40 Local nature reserve, beautiful place for a walk. twitpic.com/2ojn6 #
• 17:42 @sammaddin keeping my fingers crossed. Also bags I get to play with them. #

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• 01:19 Fingers better today so I've frogged (undone) the sock I was making and started it over again, it's easier than trying to fix the problem. #

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• 12:42 seems to be a good cycle so far, had friend over for dinner last night. Was great fun, Phil cooked chips and Mavis brought Port. #

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• 11:19 Hospital fine yesterday so I'm all hooked up to drugs today, Feeling okay though. #

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• 18:42 Cooking honey glazed veg, just been to look and they are still rock hard. Late dinner tonight I suspect. #

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Tweets for Today

• 11:06 Sister coming to visit today. Got past the frantic tidying we used to do but am considering hoovering the carpet. #
• 13:28 I needed plasters for sore fingers. Bought Kids Jungle; got tiger on left hand and python on right. Can't wait till the district nurse sees #
• 19:16 @vickya63 It's a side effect of the chemo. You get cracking and layers of dead dry skin peeling. Knitting makes it worse but I still do it. #

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Tweets for Today

• 23:50 Knitting again, just getting to the end of current shawl and listening to Enigma DVD. #

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Tweets for Today

• 12:35 Just had the first Rossi ice creams of the season. Life is good. Also tummy is very full. #

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Tweets for Today

• 15:15 Off to see Dad and pick up our cat. #

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Tweets for Today

• 13:16 Waiting for district nurse to come and disconnect me. Soon I'll be freeeeeee! #

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Tweets for Today

• 01:25 @badriya Have you tried Tea Tree, 3 drops in a bath with some oil to dilute. If you catch it in time you can stop a cold in it's tracks. #
• 16:19 @badriya It may have but I always findvthe pure essensial oil works best, lasts for ages and works wonders on any cuts or scrapes too. #
• 16:22 @badriya don't know how easy to get there; do you have Heath food type shops there? Here you can get there, pharmacies, even supermarkets. #

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Tweets for Today

• 14:21 Great time at the party last night. Almost all the family together for the first time in years. 21 peeps #
• 14:23 Jill is happy and still bouncy even after Speke Hall. Beautiful house; shame about the NT heavy squad. #
• 17:15 Everton shop, followed by Speke Hall, then Lyme Park. Only fly in the ointment is that I seem to have lost my scarf. #

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Tweets for Today

• 14:40 Running around trying to get ready to got off to Shan and Mikes. #

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Tweets for Today

• 21:58 Made Teriaki fish for supper, it was lovely but I think Iate too much feel slightly queasy now. My own fault for being a pig! #
• 20:21 Cooking cod in a tomato italianish sauce tonight; hope it tastes as good as it smells. #

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Tweets for Today

• 12:29 Just blocked the lacey scarf I made for my sister (hope she likes it), did I mention that I hate the blocking part of knitting? #

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Tweets for Today

• 15:24 Just trying to do a bit of jewellrey, my hands do seem to be slowly recovering now I'm off the Oxalyplatin. #

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Tweets for Today

• 11:59 Going to write a weblog at long last. Then knitting as a reward. #

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Hi Everyone,

About time I wrote a new post.

The last scan was a bit scary showing that some of the liver and lung tumours had shrunk a bit but some of the lung ones had grown a little. First time I've had any growth in the 15 months I've been on the trial and because my tumour markers have been so high they were concerned.

However the Professor has reviewed my case and feels that the disease is still stable so I can stay on my current treatment for the moment.
Worst that will happen is a change of drugs if the current trial stops working.

Next weekend we are off up to Liverpool for my sister's 70th birthday party, will be a huge family get together and I'm really looking forward to it. We've spent the last couple of months hoping that my chemo weeks would stay the same and they had! so it's my good weekend. We have family gathering from all over the place including Aberdeen, Spain and USA.

Woo Hoo!!!

Tweets for Today

• 11:15 Going to craft fair at ExCel today. Woo Hoo! #

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Tweets for Today

• 14:21 Can't knit today cos hands are sore :-( still hopefully better tomorrow. #

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Tweets for Today

• 10:46 Friend visiting today. We will have chips and a video! #

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Tweets for Today

• 19:33 Been ti visit Dad and watched some episodes of Hustle with him. Supper soon. #

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Tweets for Today

• 01:15 Made a big pot of celery soup for my lunches and a big spag bol sauce for dinner too (with Qourn of course). at least 2 dinners there. #
• 11:41 Today I will be cleaning kitchen from the cooking session I did yesterday. #
• 14:53 @sammaddin You should be so lucky. #

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Tweets for Today

• 12:19 Looking at celery soup recipes. Life hasn't been the same since Heinz stopping making cream of celery soup! #

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Tweets for Today

• 21:48 @marydeeo I wouldn't dare try to steal anything from @infobunny, I think she may be a scary bunny wif sharp teefs #

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Tweets for Today

• 19:51 playing with my new eee. I am a very spoilt bunny rabbit. #
• 19:52 Also watching the Simpsons. #

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Tweets for Today

• 12:25 Staring OU course on Darwin, I'm looking forward to it. #

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Tweets for Today

• 23:36 Scan results mixed, slight growth in the lungs but some shrinking in liver. They want to discuss with consultant Had chemo today though. #
• 23:37 I have clinic appointment Monday but they are hoping to talk to consultant so possible I'll hear by phone Thurs or Fri. Fingers crossed! #
• 16:41 Just been to the hairdresser to have a wash and dry. I always feel better with clean shiny hair. #

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Tweets for Today

• 22:37 Watching the last episode of Hustle. We only bought all 4 series a few days ago and gobbled them all up. Sad day in the Bradley household. #

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Tweets for Today

• 09:18 Off th the hospital for a scan later today, fingers crossed that it doesn't snow. #
• 16:25 Home now, weather filthy. Hosp again tomorrow for scan results and chemo. #

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Tweets for Today

• 13:43 Updating the podcasts on my iPhone; loads of Stephen Fry ones I want to watch. #

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Tweets for Today

• 13:14 @stephenfry I like the bag let the scorners hang their heads in shame. #

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Tweets for Today

• 17:30 I'm making spag bol (with pretend meat of course) I do love Quorn! Smells good and I want my dinner NOW! #

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Tweets for Today

• 11:13 #uksnow cm11 7/10 #
• 11:15 So glad I don't have to attempt to go into London to work today. #
• 11:36 #uksnow cm11 9/10 #
• 11:36 Snowing much heavier now (out here in the sticks anyway) #

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Tweets for Today

• 11:56 Got my new OU course books, doing Darwin and Evolution this time. Looks intersting. #

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Tweets for Today

• 15:26 Just finished buying beads for a scarf pin I'm making for a friend. Now back to knitting socks while my hands let me. #
• 18:22 Just messed up a whole frow of my sock, decided to leave it for the moment cos otherwise I'll throw it across the room in frustration! #

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Tweets for Today

• 11:21 At hospital waiting for chemo to be ready. Knitting a sock and reading "The World without us" by Alan Weisman. #

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Tweets for Today

• 11:32 Getting ready to go and visit Shan and Mike. #
• 14:23 Reading "God is not Great", by Christopher Hitchens. I like this man! #

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Tweets for Today

• 09:19 At hairdresser havingbit coloured, cut and blowdried. Was going to have it done before Xmas but life intervened. #

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Tweets for Today

• 11:19 Reading lots of books at the moment 2 paper based 1 online and 1 downloaded on my Iphone; I am book-rich. #

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Tweets for Today

• 12:10 Sun is shining and I'm feeling good today. #

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Tweets for Today

• 20:33 Southend scored, us Essex girls are pleased. Essex boys may have extra good fun tonight. Wink wink! #

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Steroids can be good

Hi Everyone,

I've just has a burst of energy (probably a result of the steroids they gave me yesterday when I had chemo).

As a result I've finally got around to emailing all of the lovely people who sent good wishes. All the people that is who I have emails addresses for!

However there are a few I don't and you can't send a private reply to replies on this blog so I'd like to thank anyone who hasn't has a personal reply for your kind thoughts and wishes and for keeping my spirits up when I'm to down to be a good friend and reply. Esp CW who sends loads of positive stuff from Australia.

Hugs to you all
Jill (lucky to have a fab husband and lots of support from family and friends)

Tweets for Today

• 11:46 Up very late cos I'm lazy, tomorrow will have to be up at 6-6.30 for hospital (keep your fingers crossed that my bloods are okay then)! #
• 12:51 Just had shower and washed hair, so nice to be without the PICC line sticking out of my arm, makes showers a pleasure again! #
• 14:07 Off to the library to pay for a book that I lost (bad Jill!) I'm hoping that we can buy creamcakes while we are out toom #

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Tweets for Today

• 01:39 Can't sleep so playing on the puter #
• 01:56 @marydeeo I'm good just now, hospital again on Tuesday so good part of cycle. Been remiss about twittering for the last few weeks though! #
• 11:59 @marydeeo The soup was mainly for Dad, I sent him 12 cartons of it yesterday via Phil's brother - Dad's got cold so I can't go see him :-( #

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Tweets for Today

• 11:29 Happy New Year everyone #

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Hi Everyone, Happy New Year!

So sorry that I haven’t been in touch recently but frankly just between you, me and the gatepost December was a truly horrid month and I either didn’t have the time or the energy or the heart to write.

Feeling slightly better now so I thought I’d write a catch-up post (some of you may have read bits and pieces in my infrequent twitter posts so feel free to ignore the following whine but I think writing it may make it easier to put it behind me)

Anyway the month started on 2nd Dec when I went into the MDU for my usual treatment all went well but when I got up on 3rd my left arm (the one with the PICC line in) was slightly swollen and pink. I phoned the hospital and they were concerned but as it’s such a long drive they suggested that I might want to have my local doctor check it out first. By mid-morning when I saw the doc it was much more swollen and turning a delicate shade of purple so she sent me to the Marsden right away.

They did an ultrasound but to be honest by this time it was more to see where the clot had formed than if I had one, it was much further in than they expected just above my heart (apparently that’s not too bad it’s the ones in the lung that are really dangerous) still it was scary!

They pulled the line and then I had to be admitted as the treatment was only half finished. If you don’t have some sort of central access line they have to give you a very diluted form of the drug as in it’s more concentrated form it would burn the inside of the smaller vein.

Being admitted to hospital unexpectedly when it’s too far from anything to be brought in from home is the pits! Poor Phil had to come in fairly early the following morning to bring in all of my medication then the infusion which was due to finish at about 8-8.30 lasted till after 10.30 so we didn’t get home till midnight. To be fair they offered to keep me in for the extra night but then Phil would have had to go home late and then come back AGAIN the following day.

I had agreed with the doctors that having been through 3 PICC lines it would be better to have a central Port put in (the advantage is that you don’t have an open wound like you do with the PICC but you do need to have a general for it to be put in and taken out too)

On the Monday the 8th I got a call from the Fulham branch of the Marsden arranging for me to go in on the Wednesday to have the Port inserted (this would mean it was done in time for my next treatment which was due on the 16th) poor old Phil cancelled his 3rd job in the period and then half an hour later the Sutton branch called to say they had arranged a scan for the Wednesday too.

Now we come to the 2nd thread of horrible December. You may recall that I had a scan in November which showed that everything was stable, I did ask about the fact that my tumour markers were rising but the doc said it wasn’t a problem. Anyway they had risen sharply and now they were very concerned that it was a problem. So the cancelled the Port in favour of the scan partly because if the drugs had stopped being effective I might not need a port for the new drug regime. So now we have two very scary things happening at the same time!

So Wed 10th we are back in the Marsden having a scan, they also made me an appointment for Monday 15th for the clinic to get the results. I’ll leave you to imagine what was going through our minds for the next few days.

So Monday comes and the scan shows no growth in the tumours, everything is still stable (best news we could have had). This however was going to be an exhausting week for us both!

Tuesday we had to drive back to the Marsden (early morning this time) they had booked an appointment for me to have a new PICC inserted to last till the Port could be done. Well after 3 PICCs there was only one place left to try and boy did we try! They use and ultrasound to locate the vein then give you a local and try to access the vein while checking progress on the ultrasound, I think we had 6 tries before the nurse admitted defeat (my veins were not playing at all). Given that the treatment still seems to be working well for me and that I was okay physically they didn’t want to delay my treatment till after Christmas to they admitted me back into hospital for treatment on Friday 19th for 3 days. In the meanwhile on Wed 16th we had to traipse up to Fulham to have my pre-assessment for the Port op which had been rescheduled for 23rd Dec. Oh Joy!

I wouldn’t let Phil come to visit on the Saturday because he was totally exhausted from all the running around during the week, I have to say the food at the Marsden is by far the best hospital food I’ve ever tasted to the point where you actually look forward to meals.

In the meantime at home Phil wasn’t resting like he was supposed to; he spent the whole time cleaning and tidying the house so that I didn’t recognise it when I got home (he says it was displacement activity but I just think he is wonderful. He found my precious 21st ring which had been missing for months (I’m getting ahead of myself here cos he gave me the ring on Christmas day but I was so pleased I cried!).
Phil came early Sunday evening to pick me up but once again the treatment overran and we didn’t leave till after 10.30 again.

We had Monday to rest (well actually with all the running around we didn’t have and food in the house so we went shopping). Then on Tuesday we had to leave the house at 6am to get into London in time for my op (in the end after looking at all the options we forked out for taxies both ways cos there is no parking anywhere close and they didn’t want me travelling home on public transport (especially on 23rd Dec).
After all this we did manage to have a fairly good Christmas and Boxing day although poor Phil had to do all the work once again (sometimes I wonder why he puts up with me but I know it’s cos he loves me)

My next treatment was scheduled for 30 Dec, the new port worked fine (I’ll have to have a District nurse come in to flush and disconnect it as you need to have special training).

Sounds like the end of our difficulties except.... 1am in the morning the pump started to alarm and al the ways I’ve learned to fix it didn’t work, I called the night number and they said it was the pump and I’d need to go in to get it replaced. Joy of joys - yesterday we drove back to the Marsden! Turned out the pump was overdue for a service.

The pump should have only taken a few minutes to replace but while the nurse went to get a new battery she forgot to clamp my line. I shouldn’t have bled so fast but of course Phil has been injecting me with blood thinner every day to help with the clot so by the time I realised I was bleeding back do the line and put the clamp on it had got into the drug bag which was therefore contaminated. This meant that we had to wait for hours while Pharmacy calculated how much drug I’d already had and made me up a new batch.

Boy were we both exhausted by the time we got home.

I’m hoping that it was the last gasp of a horrible December and that with the New Year things will get better for us and for you all.