Congratulations to Kate!

I just wanted to send huge congratulations to Kate Harvey who has raised well over £1000 for The CF Trust by completing The Great North and The Great South Run! A totally amazing achievement in itself and also raising a fabulous amount of money that will be used to help find a cure for this horrible disease. As someone with CF I just want to say a huge THANK YOU!!!!! You are fantastic!

The Jive Aces at Duxford

The fabulous Jive Aces appeared at the new Airspace superhanger at Duxford Imperial War Museum last night and they were brilliant! They are the best swing band out there, and they always give a fab performance. Despite the ticketing fiasco and the awful weather there were lots of lindy hoppers there and we hopped the night away (although there was a pause in the middle to have a few local bands play who were surprisingly good). The hanger is a fantastic place and it was a shame there was not more lighting on the planes and a bigger dance floor. I managed a couple of dances and a few strolls so I was pretty pleased with myself. I took lots of pictures but its not easy getting pictures of people in motion so here are a few of the better ones and some of the Jive Aces!














Paul and Fae zooming past, with Dan, Kathrine and Lotte in the background.

Somewhat randomly they had an origami exhibiton going and we all made some swans. The professionals had made some amazing paper culptures, but my total favorite was Yoda! How cool is that!?

Newquay,Land's End, John O'Groats and all the way back!

One of my friend's from the CF forums is organising a charity VW rally from Newquay to Land's End then to John O'Groats then back again next summer. It's all in aid of charity, one of which is the CF Trust and he's looking for people to take part and for sponsorship. He's set up a website

http://www.dubkings.co.uk/

so please take a look, tell your friends, maybe donate, maybe even take part! It looks like real fun, I may even try and find myself an old (ie cheap!) old VW and take some of my mates for one hell of a roadtrip!

Things that are just so annoying!!!

This is Ros on her soap box jumping up and down and complaining about the things that really are incredibly annoying.

- Companies that cold call you, usually just when you are having dinner. I do not want a new kitchen/windows/phone contract/chance to win a cruise etc. if I did I would go out and find one for myself. its especially annoying when the call centre is in a foreign country so the line is terrible and the person that speaking has such an accent that you can't understand a word. And they never take no for answer, just go on and on and on, I've started telling them I am under 18 and therefore not eligible!

-Drivers that use their fog lights when its not foggy. This is just plain dumb and very annoying for other drivers who get dazzled.

-People who aimlessly wander around busy places such as between tube lines or in the centre of Cambridge. I'm not talking about slow walking (although that's fairly annoying) but those people that just wander around with no idea where they are going usually walking into everyone else and causing people who know where they are going to have to jump out of the way to avoid being pushed.

-Cars with Baby on Board signs. Is there really a point to these signs other than to say this car contains a baby and why would we want to know that? Its not as though people will try even harder not to hit them cos of this sign... I was under the impression that driving safely was all about not hitting other people whether there is a baby/OAP/student/other type of person on board or not!

-People that park in disabled parking spaces when they are not disabled-obvious really.

-Over use of a particular word or phrase, e.g. random, although I am guilty of this but I am trying to cut down.....

Anyone else got any pet hates?

Penguins!

I was looking for a nice picture of a penguin that I could try an digitize, but instead I found this fantastic animation- The Penguins from Madagascar in a Christmas Caper. To watch it go here-

http://www.youtube.com/watch?v=5pvTL557VFw&mode=related&search=

My favorite penguin is Ricco the totally loony one with the dynamite, anyone who can produce dynamite at the drop of a hat is good in my book!

More Xquisitness

In between other projects I have been making lots of Christmas cards on my super amazing sewing machine. These are mostly for my Mum and Aunts but if anyone wants some then just drop me a line and I can do some for a very reasonable price!

Bizarre Drugs!

I like to think that I have become something of a connoisseur of pills and capsules in their various forms, and I have over the last 26 years taken a quite phenomenal number (I think I've averaged about 40 pills a day since I was three.... that's a lot of pills). But never in my experience have I come across such a hilarious drug as the new one I was prescribed on Wednesday at Papworth. I mean look at it! Have you ever seen such a revolting colour scheme, they practically glow in the dark! Most of my pills are either brown, dark blue or non descript beige- these look radioactive....

I've been feeling pretty rotten recently, and one of the lovely bugs that I have been growing in my lungs is a fungus called Aspergilis. Everyone inhales this all the time as its in the atmosphere, but in people with CF it can sometimes cause problems. So as I'm taking medication for all the other bugs they figured why not try and get rid of this one too, and that might make me feel better. I am now taking this monstrous looking pill twice a day, its technical name is Itraconazole, but just to add insult to injury its commercial name is Sporanox! I'll be lucky if I manage to take any cos I can barely swallow them for all the laughing!

Leggings, leggings everywhere!

Today I went to London to look for some fabric for Neil's suit, and everywhere I looked women were wearing leggings. Not just teens but women like me, old enough to remember leggings from the eighties i.e. should know better! Some accesorised these revolting things with dresses, some with big jumpers, most with ankle boots. What I want to know is-Why? Have we learnt nothing? Is it just 'cos Sienna Miller was seen wearing them? (and what is with those boots?)

They really are a strange garment when you think about it; not quite tights, stockings, or socks. They have a vague affinity with trousers but only just as the cropped ones just leave large patches of bare shin. Its just so unflattering! Their whole point is to draw attention to legs, so anyone with chunky ankles, knobbly knees or wobbly thighs look out! Even if you have lovely legs there is something undeniably silly about wearing leggings, especially with ankle boots so you get that little ring of exposed leg. Isn't that cold?? And don't even get me started on the lovely pair of leotard print ankle warmers with leggings and ankle boots that I had to endure on the tube..... Unless you are a professional dancer there is no excuse! We clearly learnt nothing from the eighties when this horrible garment was last prevelent. Please girls resist the temptation!

Live life, then give life.

Two posts in one day- this must be important. And actually it is, the two girls Emma and Emily, who set up the Live Life then give Life campaign are both regulars on the CF Trust message boards, and tonight they put this link up
http://www.onetruemedia.com/shared?p=130f05db50d4d4dbeb8f49&skin_id=0&utm_source=otm&utm_medium=text_url
Please, please, please, take a look and think about joining the Organ Donation register, I'm on it although they probably want some of my organs! Emily is on the transplant list already as are many other people with CF, one day I'll be on there too for a double lung transplant. Its a scary thought, but it is truly amazing what they can do these days, and by joining the register you could give someone the chance at life. For more info go to the campaign site
http://www.livelifethengivelife.co.uk/

Thoughts for the day....

1) Good health is merely the slowest possible rate at which one can die.

2) Give a person a fish and you feed them for a day; Teach a person to use the Internet and they won't bother you for weeks.

3) Some people are like a Slinky... not really good for anything, but you still can't help but smile when you shove them down the stairs.

4) Health freaks are going to feel stupid someday, lying in hospitals dying of nothing.

5) All of us could take a lesson from the weather. It pays no attention to criticism.

6) Why does a slight tax increase cost you 50 quid and a substantial tax cut saves you 50p?

7) In the 60s, people took LSD to make the world weird. Now the World is weird and people take Prozac to make it normal.

8) We know exactly where any untaxed car is located among the millions of cars in Britain. But we haven't got a clue as to where thousands of illegal immigrants and terrorists are located. Maybe we should put the DVLA in charge of immigration.

(Before anyone comments that I am being evil and mean, these are not serious-its a joke!)

My Parents Wedding

My Dad has recently been putting all our family photos into albums that will make them last longer, and he uncovered a whole load of pictures from their wedding on August 7th 1970. Now my Mum was not a huge fan of big white weddings when she was young so she had a registry office service and small reception and I think she actually hid a lot of these photos as I had not seen them til now! I already knew she'd got married in a mini dress cos I have seen the actual dress, but I did not realize just how short it was-yikes! My mum was so cool! So I thought I'd post a couple of photos....


Mum and her two sisters, all in Micro minis!
My parents and their parents.

Has the World gone completely mad???

Its official the world has gone totally insane. I found this advert in the back of the Telegraph Magazine (go here www.detoxandslim.co.uk to see it) and I am gob smacked. Foot Detox Pads??? Oh my God! Are there really people out there that stupid that will buy this rubbish?! My favorite bit of the ad is the fact that these things are 'based on the ancient reflexology priciples that indicate a 'natural trap door' on the sole of the foor'- what does this mean??? Do we all have small doors on the soles of our feet? What a fantastic image. Even better you get rid of all those nasty things like caffeine, nicotine and pollution through them which turns the pad black- isn't that nice! Apparently they work through 'osmotic pressure' just like a tree (oh I can't help it I have to laugh). Its not even an April fools joke that's really really late.... and there are people on there saying how wonderful these things are and how well they work. Whatever next.....

Happy Birthday to Me!

So yesterday was my birthday and I have now reached the grand old age of 26, so I am now closer to 30 than to 20-eek! It is a bit of a weird feeling as when I was diagnosed with CF the life expectancy of a person with CF was only 24, so I have now outlived that.... These days people with CF have a life expectancy of 31, so in relative terms I am practically geriatric! Ah well, as someone said to me yesterday 'you are as only as old as you feel' I didn't think they'd appreciate it if I'd answered that if that was true then I was about 85!

On a more cheery note, a bunch of us went down to London yesterday for a merry jaunt and had lunch with Ben for his birthday and then later went to see Wicked at the Apollo Victoria for Dr James's birthday. (Its so good, I had a fantastic trip on my actual birthday and I did not organise a thing!) The show was absolutely amazing! I don't want to give the plot away but its a sort of prequel to The Wizard of Oz; about how the Wicked Witch of the West and Glinda the Good went to school together and how they ended up being good or wicked. It's not your usual cheesy, glitzy West End show with a chorus line of shiny girls all going two, three, kick, turn, turn, turn, kick, turn! It's got a fantastic plot and is rather more dark and complex than the film. The sets and costumes were incredible, I was totally drooling over the green Emerald City dresses, and the two leading ladies were superb, as was the whole cast in general, special mention of Adam Garcia as Fiyero- fantastic singing and dancing and soooo gorgeous too. I definitely give it five stars and two thumbs up-go see it!

Dr and Mrs Watson

So before I checked in for a stay at Hotel Papworth, I was busily making a wedding dress for my lovely friend Fran and three bridesmaids outfits and a dress for me too! She married the lovely Dr James Watson in Cornwall on the 5th of August and I am finally putting some pictures up of what was an absolutely lovely day, and you can see just how gorgeous Fran looked if I say so myself!

I really like the group photo of a whole load of people who were involved in the production of The Mikado at the Minack theatre back in Summer 2000, we are all doing silly theatre type poses- seemed like a good idea at the time! Its so great that so many of us are still really good friends.

This photo is also really cool (huge thanks to Anne Carter who took it) as you can see the extra tartan frill on the skirt that I added for the dancing, even more fun it was the same tartan as James's kilt! I really loved the design of this dress as it could change depending on the situation, so the train was pulled up for dinner and tartan ribbon was added to the lacing for the evening etc. I am a great believer in transformable dresses, so much more interesting!







More pictures will be added as I grab them off people so watch this space....

Freedom!!!

Hurray I am free from IV's and doctors and nurses and physios and Papworth Hospital in general! I can sit in front of the telly and not have people checking my blood pressure, blood sugar levels, temperature and oxygen saturations every two minutes and no more nasty drugs and procedures for me! (or at least for the next year -fingers crossed) I can now bend my left arm again as they have removed the line from my left elbow and it is bliss! I'm utterly shattered and a little spaced out still from the sedation I had for the bronchoscopy, but its so nice to be home again.

The bronchoscopy actually was not too awful, they bunged a second line in my right hand and then filled me up with mind bending drugs. I do not remember too much other than giggling like a maniac whilst the ceiling spun, before lying down, and a very odd feeling in my throat as they sprayed anesthetic down it. Don't remember getting back to the ward but when I woke up I had THE sorest throat and an oxygen tube up my nose- no idea how that got there but pure oxygen is really good stuff! So once I'd mostly recovered from the sedation and had a few more IV's the doctors finally decided I could go home. I think I shall probably sleep for the next week or so as being woken up at 6 am every morning for lots of IV's is very, very tiring. Hopefully I'll be out and about next week, and dancing away on wednesday.

Thanks so much for all the lovely cards, chocolates, messages and visits, I feel most loved :-)

More fun and games in Papworth Everard.....

So I have been here ten days and all I can say is that I am bored, bored, bored, bored, bored, bored, bored! I never realised just how many different things I do that I can't do in here and it sucks. It is just sooooooooooooooooo dull being stuck in hospital, especially the 48 hours I had to be barrier nursed, which is basically like being in a really clean prison. I've also had my fun three days being attached to a blood sugar monitor (which went a bit nuts for the last eight hours and kept telling me my blood sugar reading was unacceptable- see I can even cause tiny little computers to randomly crash!) and I had a lung CT which at least was painless. At some point between now and friday I'm going to be having a bronchoscopy whether I like it or not, unsurprisingly I am not looking forward to that experience at all... it still sounds totally unplesant.

At least when I went to the Ear, Nose and Throat consultant at Addenbrooks my nasal CT showed that the polyps I have in my sinuses have responded to treatment so I am not going to need keyhole surgery on them-Thank God for that! Can't wait to escape on Friday!

Fun and Games in Papworth Everard

So as of tomorrow I am going to be incarcerated without the option of parole at Papworth for two weeks. I am going to be having lots of lovely strong drugs, a chest CT, a three day sugar monitoring test thing and a bronchoscopy (I think thats how its spelt) although hopefully the last one won't happen as it sounds truly nasty. Having an endoscope inserted right to the bottom of my lung is not my idea of fun, especially as you are only sedated and not unconcious-urgh. The whole point of this ordeal is to try and get my lung function back up from the rather crap 60% its currently hovering around and to find out if I my pancreas has packed up to the extent that I am now diabetic as well- oh life is so much fun! But if all this stuff does work and the insulin I may have to take helps me feel more human then that is all good and will be wonderfull indeed! If they've got internet on the ward then I may post a couple of times to show how much fun I am having, although it may be more of a rant of just how bored I am giong to be..... See you on the other side.....

Seagull Party!

Well last weekend was Fran's Hen Day, but we decided to rename it her Seagull Party as this is a far more appropriate bird for a Cornish lass! The day started with a leisurely boat trip down the Cam, with lots of Champagne, picnic food and chocolate brownies. This was surprisingly educational, as the nice captain showed us, baby moor hens and kingfisher holes, although unfortunately no kingfishers!


We then decamped to Darwin island where we played many party games. My personal favorite (apart from giant Jenga) was the 'cereal box game' . I had not played this before but its hilarious. Its very simple all you need is said cereal box, or cardboard box of similar shape. All you have to do is pick the box up in your teeth, but whilst doing this only your feet are allowed to touch the floor. Once everyone has managed the fist height, the box is cut down a bit and everyone tries again. If you fall over you are out and you keep going until evetually you get down to just a slip of cardboard! Many different techniques were developed for folding the body up to get heads down to cereal box height, these ranged from 'the lunge' (rather like an exaggerated fencing lunge, with both hands supporting the persons weight on the front foot), 'the yoga' (bending all joints and spine whilst feet stayed together), 'the splits' (fairly obvious- both feet as far out as possible to get as low as possible) and my personal favorite 'the cross' (you cross your feet over, then sort of sit down onto them and stick your head between your knees!) .

The evening concluded with a huge BBQ, cooked by the lovely Clackson girls. Some very brave ladies then went to join the tale end of James' stag do at the ADC, I however wimped out and went to crash out!

All my photos of the day can be found on my yahoo photo site which is here- http://uk.pg.photos.yahoo.com/ph/musoros
in the seagull party album. They are all in black and white as I managed to get the camera into black and white mode and can't seem to get it out again.....

Weight Watching

Well this post is probably going to be a little bit controversial. Seeing as I spend a lot of my time with Doctors and medical people in general I am always interested in facts and figures pertaining to how they spend the money allocated to them by the government, especially considering the total mess the NHS is currently in. I was astounded to read in The Telegraph yesterday that obesity-related conditions are costing the NHS a massive £1 billion a year, which as the proportion of obese people in the population increases is only going to get worse. Sadly a large proportion of children are overweight- nearly half of teenage girls and a third of boys are overweight or obese. Its unfortunate but a child with one obese parent has a 40% likelihood of being obese which doubles if both are obese.

Now this is where I am going to start putting peoples noses out of joint, it is common knowledge that being overweight is unhealthy, its the second most dangerous thing you can be healthwise, other than being a smoker, and yet thousands of people are still eating unhealthily, taking noexercisee and as a result developing diabetes, heart disease and any number of other diseases. I find this completely selfish and irresponsible. Some hospitals have recently started refusing to treat smokers, or put them on the transplant list if they refuse to stop smoking (seems obvious to me!), and whilst I am not saying that people should not be given necessary treatment they should be actively encouraged to change their lifestyle and become less of a burden on an already over taxed health service. The majority of people need not be over weight if they would change their lifestyle and eating habits.

I also strongly object to the vast amount of money spent on developing so called slimming drugs- what is wrong with healthy eating and exercise??? Yes its tough but it does work. Whilst I am fully aware that there are a small number of people with a genetic pre-disposition to obesity as shown by the discovery of the obesity gene GAD2, and that external factors such as depression, stress and so on can cause over eating, we are in serious danger of turning being over weight into an illness, somethingg that people cannot help. I find it hard to take that for want of a better description 'real illnesses' that people cannot help having are loosing out, both in terms of funding and of beds that are being taken up by weight related diseases. To an extent these obesity-related diseases are self inflicted as people do have a choice as to what they eat and how they live, just as smokers can choose to smoke, why should the rest of us fund their selfish habits? Just think about the number of cancer or children's wards, not to mention research into illnesses like Parkinson's, Alzheimers, Asthma, Multiple Sclerosis and yes my own personal cause Cystic Fibrosis..... its staggering the differencee that money could make to so many peoples lives that have been blighted through no fault of their own.

This is not in anyway an attack on anyone and I do not want to insult anyone or suggest that loosing weight is easy- believe me its just as hard to put weight on and keep it on when you have CF. I am also not suggesting what the paper called a 'fat tax'. I am simply stating my opinion that people should take better care of themselves and especially their children and in the process save the NHS a lots of money and themselves a lot of ill health.

P.S
Before anyone asks I am a size 10, this is mainly due to my CF as I do not absorb fat properly but believe me if I had the choice between being (a) thin and having CF, or (b) having to exercise and eat healthily and not having Cf I would take (b) every time- so please no comments along the line of you don't know what its like/ its easy for you, you are this etc etc. cos trust me I know what its like struggling with food and its never easy having CF.

Mole Hall

Continuing in my role as tourist I went to Mole Hall wildlife park this weekend, as its just round the corner from where I live. I've not been in over a year and its still lovely. It has a few exotic animals, like flamingoes, lamas, chimps, and the butterfly house. Mostly its otters, farm animals, deer and lots of birds. One of the best things is that the animals are all completely used to being around humans so you can get really close and get some nice photos...