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Saturday, November 15th, 2014
12:54 am - Free- PDQ powertrike (for parts or needs repair)
Hi,

I have a PDQ powertrike, with the standard battery pack (replaced a few years ago but not charged recently). It has the attachment to connect to a folding wheelchair with crossbraces.

The lights come on, but nobody's home, so I suspect the motherboard is kaput and suggest it is good for parts. This is just a guess. It was fine until it stopped working, no other faults.

It was invaluable to turn my manual wheelchair into a 11mph trike (think Easy Rider!) for everything from going to Tesco, to going to Glastonbury.

Might also be useful for parts for someone working on an electric bicycle project? The wheel, brakes etc are fine.

Image here for people who dont know what I mean: http://liveimageserver.dlf.org.uk/mee//products/full/0036873.jpg

Free in the next week, or we will send it to the tip, as we need the space.

Collect from E11, or arrange postage. TNT has a free trial delivery offer which could probably be used.

I hope it can help someone! Ill be advertising it widely, and please feel free to spread the word. It would be a shame to bin it.

If interested email flash@gorge.org with subject POWERTRIKE. Thanks!

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Monday, September 15th, 2014
1:13 pm - Mood bands
I've just come across this wonderful product, aimed at people with autism, but which I think could be far more widely useful: http://www.asdvisualaids.com/home-learning/asd-mood-bands.html

It's a doublesided wristband. On the green side it says 'Happy to talk' and on the red side 'Please leave me alone'. Comes in child and adult sizes. You turn it inside out to change the mood.

I think that's a brilliant idea (ignoring for a minute that some people are hypersensitive to textures etc and might not like the feeling of wearing it).

They are 3 for £5. I have no connection to the company, I just think it is an amazingly useful idea.

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Tuesday, September 2nd, 2014
12:33 am - Looking for a part time PA (personal care etc) in east London
My PA gave her notice today, after a year working with me. So Im recruiting again. Word of mouth seems to work best - anyone interested or know someone who might be?

Main duties: housekeeping / cleaning / gardening, helping me prep food, liaising with my GP & pharmacy to ensure I dont run out of medicines, being around when I shower in case I fall, bringing me prescription milkshakes in bed, running local errands, occasionally pushing me in my wheelchair outside the house, etc. To be honest housework comprises the bulk of the duties but this is more than just a cleaning job as the whole lot are important to my health and independence.

Important: reliability, timekeeping, confidentiality, openness and honesty, willingness to support me and improve my life. Flexibility, legible handwriting and unflappability a bonus. No work experience necessary.

Applicants need to understand the difference between the medical and social models of disability; this is a PA role and NOT a "carer" role.

9 hours a week, based at my home in E11, £9/ hour. (Wish I could pay more, but it is council funded.) Prefer the hours to be spread over 2 or 3 afternoons, but am fairly flexible. Weekdays only. Ideally start end September with handover period from my current PA. Extra hours are sometimes available by mutual agreement.

Applicants must identify as female due to the personal care aspects. I am LGBT friendly and open minded, but need my PA to be so too! Happy to employ a disabled person if they are able to manage the role. Applicants must be aged 18 or over.

Only other note - I have a large, friendly, gentle dog. Applicants must be comfortable and confident around dogs, willing to be alone with him at times, and to use the correct commands with him as instructed. In return he is a lovely and cute companion in the workplace.

Please do pass this info to anyone who might be interested, or get in touch privately if you fancy it. I will of course respect your privacy too.

I'll update my application pack as soon as I'm able (this week) so you can register to show interest for that with no commitment.

Thanks for any interest or help to spread the word! This post is public and may be shared.

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Thursday, July 31st, 2014
12:44 am - Commodore will be on TV tonight (thurs)
Just a reminder that Commodore will be on TV tonight (Thursday 31 July).

"Tonight: The truth behind the bargain dog trade" is on ITV1, 730-8pm.

Ive been told Commodore made the cut but will only be featured briefly, so dont blink or youll miss him!

The premise of the show is that we love our dogs and lavish treats on them, so we should also be prepared to pay a decent amount to ensure they come from a reputable breeder. Footage of C will come in the 'we love our dogs' section. However be aware that there will be scenes of puppy farms which may be distressing.

I should be clear that Commodore comes from an amazing breeder and I am delighted that we searched the country to find her. I hope this programme encourages others to do the same.

Enjoy seeing a quick clip of my fantastic boy!

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Thursday, January 30th, 2014
8:28 pm - Accessible hotel room costs
In May 18 Im going to see NIN at the NEC. I need a wheelchair accessible hotel nearby with ideally a 12pm checkout. Dont want breakfast.

Hilton Birmingham Metropole was recommended and appears to fit the bill, however their accessible rooms are far pricier than the single room I'd buy if I wasn't mobility impaired. They offer single rooms for £59 that night, and it will probably just squeeze my wheelchair in if they remove an armchair but they admit will be a tight squeeze as my chair doesnt fold, and the bathroom is not accessible to me. (I guess they probably have an accessible loo in the lobby or elsewhere that I could use, but that is no fun in the middle of the night especially as I have IBS and sometimes need to go urgently, and I would also like to shower if necessary).

Their only accessible rooms are Queen Deluxe, £93 for the same night. I dont need a double or even queen bed. I do need more room to move around the bedroom without injury but this is an access need not a choice. Are they unreasonable not to offer me an accessible room at their single room price? Since I would take the single room if I could, and anything else is a reasonable adjustment?

Im used to theatres giving me the lowest price as I would be able to use a cheaper seat if not disabled, and Im sure Ive stayed in hotels which did the same, but it has been a while since Ive used one. Or am I being all entitled cripple and I should fork out more than one week's DLA just for a night's stay at the nearest hotel to my venue? The discount offer expires tomorrow so I'd welcome comments very quickly.

Also posted to facebook and my own LJ for opinions.

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Wednesday, December 25th, 2013
12:15 am - Merry Christmas!


From me and Commodore. Click on the image for a bigger version. Wishing you everything you asked for!

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Tuesday, April 16th, 2013
6:59 pm - And they called it "puppy love"...
Just heard the awesome news that my puppy, and its siblings, were born safe last night.

I've had a pretty rough time with my health lately - in the last week or so I've had every symptom I ever get, from pain to allergic reactions, from vomiting to dizziness, you name it! I'm being triggered by the demolition work opposite my house, so I know why it's happening and that it won't last much longer, but I was starting to feel awful and wonder if I'd made a mistake committing to a puppy - so much to do, and although I've proved that I CAN just carry on when I feel rotten, I was starting to get down and doubt myself, doubt everything.

Then I heard the news today. Since then I've been feeling like I'm going to burst! Can't stop grinning... singing... just ridiculously happy. It is simply amazing to know that our new family member is out there, and I just know everything will be ok and it was the right decision. Couldn't feel more right. Mike and I will soon be a threesome again.

Now I can let myself believe it will actually happen... and I had better get the house in order!

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Wednesday, April 10th, 2013
6:52 pm - Red Lion meet reminder
Just a reminder about the Red Lion meet on Saturday, from 1.30pm.

If you haven't already told me you're coming, please do, because I have given the pub an estimate of numbers but it would help me to know who I'm *actually* expecting :-)

We have the snug booked, which for those who don't know the pub is right at the back.

I look forward to seeing people!

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Saturday, March 23rd, 2013
9:33 pm - Labradoodle-oodle-oodle, you start off with a lab and then you add a poodle...*
For those who haven't heard the news via Twitter or Facebook, Mike and I are on the waiting list for a puppy!

We met the parents a couple of weeks ago - dad is a gorgeous Goldendoodle, and mum is a Labradoodle. So basically our puppy will probably be big, white and shaggy. :-) There are some pictures of us with the parents here. The breeder is wonderful, everything I could have wanted - I'm very lucky to have found her.

The litter is due in 4 weeks, which means we should be taking our pup home in about 12 weeks time.

We have decided on a name to follow on from Cray, and that's Commodore!

Before Commodore comes home, I'm working on three challenges:
  • Getting the house and garden cleared up - our cleaner left in November. I'm going to hire someone else, but until I find someone permanent, if anyone fancies some extra cash and is free during the week, and happy to do some cleaning or help me with some sorting, please send me a mail!

  • Getting my sleeping pattern sorted. I know I need about 12 hours sleep every night. Mike can feed and walk the dog before work, but I still need to shift my sleeping pattern because I currently wake at around midday. So I'm moving my alarm back by 10 minutes every week. I can always nap later on (when puppy naps!) If you see me on twitter overnight please tell me to get offline, even if I'm only tweeting because I can't sleep. I've asked Mike to kick my phone and tablet off the home network after 1am, too - that helps reinforce my wishes, when my self discipline is on the ropes!

  • Drinking less - I had a theory that I tend to feel more nauseous on days when I drank more alcohol the night before. Experiments have proved inconclusive, but I'm trying to cut down to a certain limit, when I'm at home for the evening anyway. It will do me good in the long run, but in the short term I expect to struggle a bit more with pain. Never mind, a puppy will distract me!

I've also been more active for the last month or so, proving to myself that even when I feel ill I can still manage to get up and go out (as if with a dog, and sometimes with my friend and his dog). I need to rest afterwards - always have, always will - but as long as Mike and I can take care of the dog's walks, I can keep him stimulated during the day with other things such as training sessions, and play sessions as well as using a feeder ball or playing "hunt the treat".

I still miss Cray very much (and we still haven't scattered his ashes...) but our family needs to be three again, and I'm looking forward to it. It's awesome to think that our new family member is slowly growing... very exciting. To think that little Commodore will hopefully still be with me when I'm 50 - well, that's wonderful. I love Mike to bits, but I feel that our household is only complete with a dog in it. Luckily Mike adored the parents and I know he's looking forward to our new family member too.


* In keeping with my usual habit of using song lyrics in the subject line, I discovered this song on YouTube. I can't decide if it's awful, or just plain abysmal, but I guess children might like it...

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8:59 pm - Red Lion meet
Date confirmed! The Red Lion meet will take place on Sat 13 April from 1.30pm.

I'll book a table, so please confirm below or let me know via other means. I'd like to book at least a week in advance, so please confirm by the end of March (it should be ok to add a few people later on if you're not sure yet).

We've just had dinner there and the menu has changed - there are now more veggie options, which is good. I took pictures of both the bar and restaurant menus and will add them to this post later today or tomorrow, so please check back.

Looking forward to showing people why I love the Lion!

****

EDIT TO ADD: PHOTOS OF NEW MENU

Here they are...

Bar menu
Restaurant menu
and for completeness, though I think it only applies to Sundays,
Host your own roast.

You can order from either the bar or the restaurant menu anywhere in the pub.

Apologies for the picture quality, I was using my phone in a busy and fairly dim pub.

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Wednesday, March 20th, 2013
10:41 pm - Red lion meet
Hi,

I've been rubbish at sorting this out, sorry!

It looks like being either 4 May or 13 April - I'd prefer 13 April, but I realise I haven't been quick to sort this out.

Are people still free and interested on 13 April? Please invite people you know I/we get along with (and let me know if they're coming, since I'd need to reserve space at the Red Lion).

I would suggest meeting from 1.30pm onward. For those who aren't local, it's about a minute or two's walk from Leytonstone tube station.

Is this still good for people? If you've all made other plans for that date, I'll have a rethink...

Thanks!

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Sunday, March 3rd, 2013
10:35 pm - April Red Lion beer meet and a poll
Hello! I am trying to organise a meet up at the Red Lion (E11) but I am not doing very well at it. So this is me trying to sort something out!

The idea is to show off the Lion to people who are not local and don't know why I love the pub on my doorstep. But of course local people are welcome as well!

I love the Red Lion, it is a rather popular community pub which caters for people who like real ale, good food, and friendly service.

So... when? Some people suggested Sunday afternoon. Unfortunately that's the worst time. They only serve roasts on Sundays - and those roasts are "ok" but nothing more. The place is heaving (mostly with families) so you have to book a table and it's all a bit of a squeeze. And from 5pm there is live music which can be too loud. So I think Sundays are the WORST day. By contrast I have visited on many days other than Sunday and really enjoyed the beer and food.

I think the best time is a Saturday afternoon. I would suggest a late lunch (meeting at 1/1.30 onward) and spending the afternoon there. I would book the "snug" area which caters for 10-16 people and does not have a speaker in it so we will be able to hear each other even if they do play music. Seats are a mixture of chairs and padded bench.

The bar menu: http://gorge.org/images/misc/2013/bar%20menu.jpg
The restaurant menu: http://gorge.org/images/misc/2013/restaurant%20menu.jpg

They have 10 handpull pumps (usually all 10 are on, but in the last week only 6 have been on) and 5 keg taps, as well as a good range of bottles, and spirits (they have Hendricks gin which indicates to me that they have spirits of a decent standard). They have won CAMRA awards for best East London pub, are in Good Beer Guide etc.

The pub is step free (tho the doorbell doesn't always work so you might need to phone them to get in, grrr!) and there is an accessible toilet.

If you are furry you will get a bowl of water and a barrel of biscuits, and if you are small you will get a high chair (although people do expect small people to be taken out if they cry/scream).

Please leave a comment if you would like to come on a Saturday afternoon, how many of you, and I will announce asap when the meet is taking place!

Which Saturdays in April could you attend at the Red Lion?

13 April
5(29.4%)
20 April
3(17.6%)
27 April
4(23.5%)
4 May
5(29.4%)


(Kake, please announce this to your friends. In fact, if anyone reading would like to announce this to their friends, that would be welcome (within reason) if you know our friends overlap, if youre not sure just contact me here or via flash@gorge.org to make sure we can fit everyone in.)

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Sunday, February 17th, 2013
1:38 pm - Come up and see me, make me smiiiiiile....
Hello, LJ readers! I havent forgotten you, but I do seem to spend all my time on twitter instead of here or facebook etc. Twitter fits better with lying in bed feeling ill or brainless, I can manage short bursts of thoughts rather than long posts. Although Ive had some good debates there too. And it is good for moral support, as lots of my spoony friends are laid up when I am, or similarly failing to sleep, etc. so we keep each other company. Come and find me there? When I do have something longer to say, it goes on flashsays.com - ah, but I digress.

I actually came here to share some Sunday smiles.

This morning I saw this pic on twitter and it amused me:
http://pbs.twimg.com/media/BDTDpdeCMAAW-dw.jpg
(a certain programme was filming earlier this morning)

A day or two ago I saw this video on twitter, which also made me smile:
http://www.youtube.com/watch?v=KIePsbJSS04
(french cats playing pattycake)

Anyway, Im still here. Still reading my friends' journals. And still missing my doggy a lot.

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Monday, December 31st, 2012
8:09 pm - Don't look back in anger...
I'm not going to post a full "review of the year" meme, but here are some thoughts.

It has been a very hard year for me. My health has been terrible. I haven't seen my mother and brother all year, and I've only left London a few times (once to Cambridge, in Spring, and then to see my in-laws in Surrey a few times). I really need a holiday, but I can't say how my health will be on any given day until I get to it, so I've been learning to take things one day at a time. I've spent a lot of the year in bed, but at least my view has changed as the pub across the road from my house has been demolished. I can now see across to the High Road and watch buses going past, which I like. Eventually flats will be built on the site, but there's no timescale for that yet.

2012 was also the year that my beloved dog Cray died. I'm still very sad about that, although I have largely got over the emptiness of the house. If I was well, we could get another dog, but right now when I'm in bed so much and unable to walk one let alone play, train, and so on, it is impossible. So I'm hoping for my health to improve in 2013, and hopefully get well enough to the point where we can get another dog.

What else has happened this year? Art wise, I had my Manholes exhibition in Slate, and currently I'm exhibiting with Mike (and others) in the Stone Space. We are doing a talk on Saturday afternoon, if anyone's interested! The show ends on Sunday. However, there have been some changes behind the scenes at the gallery, and as a result I have resigned as an organiser of the gallery (about an hour ago!) Of course I'll remain interested in the gallery and supportive of it. And now I need to find somewhere else to volunteer so that I have a reason to get up, when I am well enough.

I've only been to a couple of gigs this year - Frank Turner / Billy Bragg / Dan le Sac vs Scroobius Pip in April, and Tom Williams and the Boat at Victoria Park over summer. In 2013 I'd like to see more live music. However I also spent a day at the Olympics and one at the Paralympics, both were excellent days out, really enjoyable, and it was great to have this global showcase practically on my doorstep.

I suppose if I've learnt one thing in 2012, it is who my friends are. With my ill health I havent been able to go out and meet people in town like I used to, relying instead on them to come to Leytonstone or Stratford, even if that's a long journey for them. And knowing that I may have to cancel at the last minute. Some wonderful people have come to my end of town and I've really enjoyed their company (thank you, you know who you are - one of you even came to stay!) However, I've also been let down by the odd person that I thought would stick by me. Nothing I can do about that.

It goes without saying that Mike has been wonderful - kind, supportive, helpful, uncomplaining. I wish I could do more for him in return, and that I was well enough for a holiday as I think he deserves one. But anyway, I don't know how I'd have made it through the year without Mike's help and I am incredibly lucky - and grateful. He is the one constant that makes my life worthwhile.

So it has been a year of ups and downs - mainly downs. It won't take much for 2013 to be better. I hope by this time next year, that my health will be more reliable and I will be happier as a result.

Happy New Year everybody, wishing you all the best for 2013.

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Tuesday, December 25th, 2012
11:07 pm - Merry Christmas
Just to wish everyone a merry christmas.

For those who have had sadness and challenges this year, may 2013 be happy and hopeful.

Ive had a tough year, with bad health; subsequently no holiday and no chance to visit my family. Im hoping for better next year.

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Friday, October 5th, 2012
5:05 pm - Con te partirò
Cray Bristow (né Majopa Owl)
2 April 2000 - 4 October 2012




Goodbye to a much loved companion. He was a member of our family for 8 and a half years, and is missed.

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Friday, September 28th, 2012
10:35 pm - There is a green hill far away...
I'm doing something rather out of character... asking for sponsorship... to help a church make music!

St Andrew's Leytonstone, a local art & crafts church, have an elderly organ - a Lewis organ, for the musos among you - which requires £25k of repairs to the bellows, or there may be no organ music by Christmas.

Their organist is a friend of mine, and she has organised a Hymnathon, in which every hymn from the New English Hymnal will be sung, from 12pm on Fri 12 Oct to 7pm the following day. More info: http://www.standrewsleytonstone.org/events/hymnathon/

I plan to show my support by singing for 3 hours on Friday afternoon / evening, and Id be very grateful if you would sponsor me to do so.

Here is my Just Giving page. If you are kind enough to support me, and you have a favourite hymn, do tell me which. The one which raises most money will be sung as the finale on Saturday.

If you have any questions just ask, or catch me on twitter @techiebabe where you may also interrogate @hymnathon.

Thanks in advance for any support. I am also to be found clutching paper forms, if we meet in person before the event!

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Sunday, September 9th, 2012
12:17 am - I've been living so long with my pictures of you, that I almost feel the pictures are all I can feel
Tomorrow (Sunday 9 Sept) I am thinking of having a meet outside my new art exhibition (in Church Lane, below the library) then after a quick look, beer in the Red Lion. Meet in Church Lane outside my exhibition at 330pm.

If you are interested and intending to attend please let me know! Twitter is best (@techiebabe )

I would love to see people! I will not be awake til 1pm for the grand prix, so wont acknowledge you sooner but if ppl are coming, so will I!

Hoping ppl get in touch at 1.30etc or thereafter so I know to come along and meet ppl at 3.30!

T'would be great to meet ppl and have an excuse for beer!

Do let me know by twitter @techiebabe or phone so I know to come. Calls ok but texts are more welcome!

Note, if nobody indicates they will come by email or twitter, I wont be there... but Im still not far away if you want to call me at any point :-)


CANCELLED as I'm not feeling well today :-(

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Thursday, August 23rd, 2012
6:45 pm - You know it's going to get harder and harder, as you get older...
Cray spent the day at the vets, and now Mike and I have a difficult decision to make. Not as bad as the decision we will ultimately have to make, but difficult nonetheless.

Advice and perspectives welcome if you can help me / us decide. This is a public post so Mike may read it too.

The vet was expecting to do an aspiration of Cray's lump under light sedation. I was expecting him to do a biopsy under a general, but anyway...

He was unable to do an aspiration as the lump is so bony and so Cray would need to go back for a biopsy and chest x-ray under a general, if we want to know what we are dealing with. The x-ray would show if the lump has grown inside him (i.e. beyond what's visible externally) and if there are other growths, and a biopsy would tell us what kind of cancer it is - whether it's an aggressive type, or not, etc.

The thing is, would we take any action if we had that information to hand? The lump can't be removed easily (attached to his ribs) and we aren't going to be driving him to Cambridge for radiotherapy. Cray is 12 so he's old for a greyhound, even though he is quite fit for his age. So we would only be looking at palliatively treating issues as they arise (with pain relief or whatever may be necessary) in any case. I think Mike and I are agreed on that.

For me, I would like to know how long I've got with Cray and what to expect - e.g. if any internal organs are affected, and the speed of growth from here on.

But for Cray, is it fair to put him through a general anaesthetic and a biopsy, if it won't affect how we treat him? (We could do just the x-ray but it still requires a general.)

If I knew how long we'd got, would we do anything differently? I suppose I might wear myself out trying to walk Cray now if I knew I soon wouldn't be able to, rather than waiting until I feel well enough to walk him without making myself exhausted.

But what if he didn't survive the anaesthetic, how would I feel then?

Every time I think I've come to a decision, it doesn't then sit comfortably with me: there's still a "oh, but hang on..." niggle pulling the other way in my mind.

Obviously Mike and I have to make a decision together, but it would help if I knew what *I* thought, for a start. This is important enough that I don't want Mike just saying ok to whatever I want, too, so we have to both make decisions and hope we agree!

It's a difficult one. Can anyone help with a different perspective?

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Monday, August 20th, 2012
9:01 pm - Run fast for your children, for your sisters and your brothers
On Saturday I found a lump on Cray. It's on his ribs. This picture really shows the lump, as he was stretching in a way which made it particularly visible: https://twitter.com/techiebabe/status/236961986284515328/photo/1/large

I was surprised by the size because it seemed to have popped up overnight; I know Cray's body quite well and this was new and odd.

We went to the vet's that afternoon. She thought (as did I) that because it's hard, and not causing him any pain, it's probably cancer. Besides, I've felt bone cancer on a greyhound before, and this seemed similar to me.

On Thursday Cray will have a biopsy done to see what we are dealing with. I'm trying not to worry about the risk of sedation on a 12 year old greyhound.

Recently, we had also noticed some small changes in Cray. He's a bit more ansty / barky / won't settle as readily, he doesn't like eating a big bowl of food any more (but still loves and even steals food - he just eats it in two goes), and he is panting a lot. I put most of it down to hot weather, but now I wonder if he has a growth pressing on his stomach, or in his lungs, or...

I will wait and see what we are dealing with, but it's hard to stay calm. I've stopped googling because it suggested 2-4 months life expectancy, and I have realised that I don't like knowing facts after all. No Doggy At Christmas is an almost unbearable thought. I've stopped looking at the lump because it seems bigger every time I look, and I'm sure that's my imagination. I am starting to realise how much I love my doggy.

Advice, happy stories, etc. welcome please.

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