Monday, December 5, 2011

Abby's Christmas Photostory

Abby put this together (with a little help from me) for her VLE school forum as part of her homework. Turns out she's better than me at video editing...!


video

Thursday, December 1, 2011

The big 4-0


It was my birthday last week. I am now officially very old ;-). It's slowly sinking in that to my kids I must seem really old - I can remember my mum and dad's 40th birthdays really clearly; I must have been about 8-9, I can remember at the time getting older seemed an almost infinite way off. It's now here :-/.

The weird thing is in many ways I feel healthier than I did in my twenties - I do more regular exercise, I drink much less and I get more sleep (when the kids allow ;-)) I've not been an inpatient at the CF Ward since I was 26. And for that I've got to thank my brilliant wife for getting me away from drink and excess and into fell walking and fitness when I met her in my twenties. God knows where I'd be if I was single and still trying to follow the Jim Morrison rock star model of excess; I'd probably weight about 8 stone and be falling asleep in my own urine in a pub somewhere. As it is that's at least another year off...;-)

Anyhow, I can't get too complacent because although my CF at the moment seems under control (touch wood about 10 times) I know myotonic (muscular) distrophy may raise it's ugly head at some point. I have two genetic diseases for the price of one ;-) Mytonic Dystrophy is a late onset disease but it varies considerably so there is no way of knowing just when and to what degree it will effect me, so far so good but I've recently noticed my neck seems to be aching a lot when I wear a bicycle helmet on long bike rides - and I'm also struggling to chew roast lamb and roast beef fast unless it's really tender - maybe I'm losing some muscle tone in my head / neck before anything else? Otherwise I seem to be OK (touches wood another 100 times) although I feel I should probably join a gym to maybe build up my muscles a bit more.

Friday, November 18, 2011

Smiabetic not diabetic


So I met up with the Diabetes doctor yesterday and it turns out I'm not diabetic, yet! The 4 day continuous needle in belly test showed that I largely stay within the 4-7.5 range with only the occasional spike up into the 8.5 (usually after dinner/tea in the evening) but crucially, it doesn't stay there very long. She was even suspicious about whether I'd changed my diet for the test, and I definitely hadn't...she thinks my sugars may go out of control when I have an infection, which strikes me as particularly cruel; just when you need more carbs, your body lets you down by using less of them when it goes diabetic and you lose weight, talk about a viscious circle. Anyway, for the present I am just to keep an eye on things and maybe check when I am losing weight or have an infection.

I saw this RTA on the way in to hospital, (see link below, it was just outside the hospital) I think the lorry driver just didn't see him (has since been arrested on suspicion of driving without due care and attention) and he didn't stand a chance, just horrible. Life is so precious, this is such a waste. This is why I hate riding my bike on the roads, it only takes one person in a car/truck to not see you and you could be in serious trouble.

http://menmedia.co.uk/manchestereveningnews/news/s/1465540_video-medical-student-26-died-when-he-was-hit-by-lorry-while-cycling-to-work-at-wythenshawe-hospital

I'm moving offices today; a bunch of railtrack guys are joining us so I have to move my stuff upstair with the commoners ;-) rather than having an office to myself. I don't mind really, since my workmate left it's been a bit lonely in the office by myself. Particularly with the year I've had being in an office by myself has given me a bit too much time to think, especially with losing my dad this time last year.

Thursday, November 10, 2011

Another day, another letter from the Queen ;-)


Abby wrote and sent a postcard (of William and Kate, obviously ;-)) to the queen last week and got a reply from her lady in waiting! She's such a royalist ;-)

Her reading and writing is coming on leaps and bounds this year (Year 2 infants) She struggled last year and we were really worried she was falling behind the others in her class but this summer she's really made a breakthrough.

Friday, November 4, 2011

Diabetic Shmiabetic?

Ok, this blog is getting soooo out of date that I really dont know where to start, so I'll update with some med news (from my annual) apparently my long term blood glucose (BG) levels, otherwise known as HbA1c levels, have been rising steadily since 2006; it has gone from 5.5% back then to 6.3% this year and so I was referred to the diabetic nurse for a four day strap on test. This is where you wear a tiny device strapped to your belly (it doesn't hurt but get's in the way a bit. Sometimes ;-) ) which measures your BG levels continuously to see how the BG peaks and troughs are and how high and low your blood sugars go. You also have to do finger prick test four times a day so they can cross reference the belly device results with the finger prick device results.

I hope I'm not diabetic, it would be a real pain in the bum. So far it looks like my blood sugar is relatively normal apart from a slight peak in the evening after dinner; 2 hours after a roast squash risotto tea I peaked at 8.5, otherwise I seemed to be between 4.5 and 6.5, but we'll see when I meet up with the doctors in a few weeks...

Wednesday, October 26, 2011

Bathroom Blues



We have no bathroom at the moment. We noticed the wall behind the shower was showing signs of letting the damp in. We got the plumber to investigate and it turns out it was worse than it seemed. The water had seeped behind the tiles and eroded the brickwork. Because of the state of the bath as well we've decided to get the whole bathroom replaced and retiled, including more loose brickwork. I hate old houses...anyway, I suppose it'll be worth it when it's all done, just missing my early morning shower at the moment. I need it to wake up / do physio!

Anway, we're taking the kids down to London Village for a couple of days tomorrow so it'll be nice not to stress about the house for a bit. Abby and Rachel are going to see Wicked! I am a tiny bit jealous, even if it is a girls musical ;-) Otherwise we'll do all the touristy things like the London Bus Ride, Tower Bridge, etc. Should be good fun!

Friday, October 21, 2011

Wales Bike Ride in Pictures


























This was a very hard ride, despite the gorgeous day. I was nearly in tears with back / neck / leg pain at the end of the ride. More later.

Wednesday, September 14, 2011

Dear Darkness...;-)

...Please could you see to it that I not catch this cold that the rest of my family have? After two weeks away, Oscar has caught another barking cough cold after only four days back at nursery. The last cold I caught gave me a rubbish night cough that is only just going after a full month including two weeks of mind numbing IVs and another two weeks of male PMT inducing orals (Cipro) to make sure it's fully gone. I'm just starting to get clear. Please.

Yours sincerely
-Mr Rubbish lung man

In other news, I went to see PJ Harvey (you have to see her live, she's brilliant!) last week and met up with my sis and a couple of my old band mates Matt and Pat before the gig. Was good to see them after so long and see they've not changed - even after a year or so we just picked up where we had left off. Good times, shame the gig was on a Thursday, but at least I didn't have a hangover the next day.

We're off to Newcastle this weekend for Rachel's Half Marathon (she's doing the great North Run) she's been doing great with the training, although the running has taken it's tole on her feet (her nails are falling off and there's been loads of blisters). Anyway should be interesting looking after two hyperactive kids in the Toon while she runs. The kids are going through an "arguing" phase at the moment so it may get a little fraught ;-) Hope the weather's good for Rachel's run.

Tuesday, August 23, 2011

End of the Ivs shower


Well, I can't wait for this set of IVs to end and to have that lovely first proper shower without worrying about getting my cannula wet - I also haven't had the sense of smell for the last ten days possibly thanks to the Meropenem. And the runs. it's all good fun ;-) ...also; I've been thinking about this a while but I don't think the IVs are having as big a clearing effect on me as they used to, it's taken till the end of the 2 week course for the IVs to start to kick in on clearing my lungs...I swear it used to take 3 days before my lungs would go clear...why this is now I don't really know - I suspect it may be because my small airways are getting more knackered (losing their elasticity, otherwise known as COPD) so it is getting harder and harder for me to bring up the mucus from the small airways. I was also wondering whether it was down to the IV Tobramycin causing a problem in a similar way to the nebbed Tobi which caused my lungs to produce more sputum. Don't know. Maybe I need to chat to the doctors about trying something else...maybe a three week course instead of just two (shudder, hurl), or maybe with prednisolone?? anyway here's hoping the holiday air will clear my rubbish lungs just as much as the IVs...

Off to France tomorrow (Vendee) with the kids, via a car, ferry, and getting lost in France...hope the sense of smell returns in time to smell the sea, the sun and the French food ;-)


Thursday, August 11, 2011

New Doctor + Missed Vein = Pain

Well, I'm back on IVs after the oral antibiotics failed to do the trick. Got into the outpatients at 3 and it was mega busy, I couldn't even find a place to park. Unfortunately there was a new doctor (and trainee) that I saw for my appointment. I hate new doctors, it always takes me a while to get a rapport going with doctors (unless they're Connie Beecham, which has not happened yet, unfortunately ;-). Anyway, I / we decided it was time for IVs. The cannula itself is usually put in by the nurses, unfortunately this time it was put in by the trainee doctor, Nooooo! I could tell he was nervous when trying to find a vein to put the pink cannula in, true enough he missed first time and seemed to spend an interminable time poking around trying to find a vein, despite the fact that I told him exactly where my good vein was. And the area he tried was miles away. Grrr...anyway, second time lucky so not atrocious. If he'd failed a second time I would have asked for a nurse to do it instead.

Blows were down at FEV1 2.5/3.6 although I went for a half hour bike ride on Tuesday and didn't feel too bad, so a bit weird really. At my last clinic they said that the resistance vector of my pseudomonas to Ceftazadine had increased, so I decided its time to try one of the other IVs, this time Meropenum and Tobi. I have done it before (last time back in 2005) so hopefully it will be OK this time as well....I've also done my back in carrying Oscar. And I have another cold on the way. And society is collapsing. Good luck everyone ;-).

Wednesday, August 10, 2011

Manchester Riots

"A mob's always made up of people, no matter what. Mr. Cunningham was part of a mob last night, but he was still a man. Every mob in every little Southern town is always made up of people you know--doesn't say much for them, does it?"

Harper Lee (To Kill a Mockingbird)

I'm just so gutted about this really. I don't go into Manchester on nights out very much these days, (now I've got young kids to look after) but whenever I do I have always felt safe, and now that seems to have been taken away. I see some of these robbing clowns are even looting charity shops which help raise money for underprivileged kids. I consider myself a liberal socialist; I've worked in Salford and seen how depressing / deprived it is, I want to see these kids break the cycle of benefits + dropping out and make something of their lives. But this isn't political protest, they're not protesting against racism or for democracy. It's not even nihilism because to be a nihilist you have to reject the idea of "cool" logos on sportswear as well as society's rules. This is pathetic opportunist robbery and vandalism. I want these thugs to be tasered / immobolised before they damage any more of the city I love.

Monday, August 8, 2011

Amy Winehouse

Whatever else you can say about Amy Winehouse; there is no doubting her talent. An incredible voice and a fantastic songwriter. I think we've lost the Billie Holiday of our generation.

Not really going to try to discuss her addictions/probable bulimia, but like Kurt Cobain before she was obviously a gifted but ultimately flawed and vulnerable person with a lot of demons to overcome. I think a lot of her fans (myself included) were mystified as to why Amy could not gain strength from this soaring talent (apparently she wrote Rehab within half an hour; she recorded Valerie in one take) and ditch the drug taking losers and sort herself out.

Russell Brand wrote a lovely tribute to her and addiction in general and I pretty much agree with every word. We also need to get away from this music industry idea that drugs are cool. The Beatles may have dabbled in drugs back in the sixties but it shouldn't be exaggerated; they were never high when they were in the studio. Amy Winehouse wrote and recorded Back to Black with Mark Ronson within a week when she was stone cold sober. Anyway. Back to the voice...


Thursday, July 28, 2011

Camping it up


Currently agonising about whether to go camping in the Lakes (Eskdale Valley) with the kids this weekend; part of the problem is all the extra stuff you have to remember to pack for the kids to keep them happy, it was a lot simpler in the old days! Ah well, I suppose if we don't go now we won't be going this year. I'm hoping to get back to an old campsite in Eskdale valley. I camped there with some of my mates back in the nineties when we were all a bit wilder; thankfully we've all calmed down a bit now ;-).

Me: "Alright Chaps, We’re thinking of going to Fisherground campsite this weekend, leaving early Friday because they don’t take bookings. This site has special memories for me because the first time I was there B threw a can of soup over me and V puked up all over his tent after too much ale. Give us a shout if you fancy coming."

V: "I was so ill that night! The soup was hilarious -I think most of it missed you and went over his car. Didn't he drive off after that with soup dripping down his car door after that?"

Me: "Yes, B dented his car skidding around the campsite and then we rescued a semi-conscious sheep at the roman fort that had fallen into a stream"

G: "Eskdale that was when we all jumped off that bridge into the stream? wouldn't dare do it now but I was hurdling it from the other side of the road pissed up "

V: "Checked that bridge out few years back, no way I would jump it know, we were crazy back then.
Can't believe you remembered that sheep!"





Wednesday, July 20, 2011

Can't start a fire without a spark...

"I wake up in the morning, and I aint got much to say
I go to bed in the evening, feeling the same way
I aint nothing but tired, tired and bored with myself
Hey baby, I could use just a little help"

-Bruce Springsteen, Dancing in the Dark

God, I must be ill if I'm singing Springsteen in my head (I don't even like Springsteen, apart from his Glastonbury show the other year). I got a cold last week and it doesn't seem to be shifting...I keep waking up tired with my nose and lungs blocked up, it's a bad virus alright. Oscar has the same cold as well (think he caught it from nursery and gave it to me) and he's got a violent cough too, especially when we're all sat together eating...I've ordered some oral antibiotics from the hospital (they faxed them through to my GP) so hopefully these will do the trick, otherwise it could be time for some more IVs. At my last clinic they said (after some probing questions by me) that the resistance vector of my pseudo to Ceftazadine had increased, so it may be time to try one of the scary IVs, like Meropenum...here's hoping I don't need to...

My Dad's house is now under offer; so me and my sister (and HMRC ;-)) may be getting some money through some time soon. I don't know, I just feel so empty at the moment, I'd give all the money away if it'd bring my dad back. Although it's nice to know there's some security there with which to look after the kids in case anything happens.

Work is just not inspiring me at the moment, part of the problem is that the two mates who I was working with every day when I first started the IT developers job a couple of years ago have left, so I'm a billy no mates in the office on my own (there are some guys upstairs, but it's not the same as having someone to talk shit to all day ;-)) Part of the problem I think is that the HQ of the business is down in Norwich so although I get fired up when I go down there for meetings about business strategy and all the work were going to do, I am inevitably forgotten about and left to my own devices when I return back to Manchester and the work seems very slow in arriving at my desk. The business is also taking on a lot of contractors in Norwich (at great expense) to do jobs that I'm pretty sure I could do, especially if I was in a half-decent team. I think it may be time for a change; a new challenge, I'm starting to get jealous of my mates when they talk about how busy they are in their jobs...

Wednesday, July 13, 2011

The Polecat




















Abby: "Mummy, there's an animal under the shed, it's cute!" It certainly is.
The little critter has been nosing around underneath the shed for the last few days. I love seeing the world through kids eyes. I get so wrapped up in my own trivial little dramas that I forget how fascinating the world can be.

Saturday, June 4, 2011

Centre Parks with the Willow Foundation





Busy busy busy! my blog is so out of date I forgot to post about this holiday, and I'm off to Tunisia this weekend as well...anyway:
Last month we went to Centre Parks in Nottingham thanks to the lovely people at the Willow foundation. I did feel guilty because there is no way I am as ill as a lot of people who are granted their special day; but as my CF social worker said, I am fast approaching my 40th birthday, and after that I am no longer eligable, so it was a case of now or never this year really. I also thought I should give my kids a nice holiday just in case the shit hits the fan (whether through cf or work or whatever), and I'm not able to give them a decent holiday for a while. We had a great time, especially the kids, centre parks is taylor made for familes really, with lots of stuff for the kids to do. Seriously, I don't think they've slept so well before or since. I enjoyed it too, apart from the rowing which looks easy but is actually really hard ;-)

Wednesday, May 18, 2011

Work and other four letter words ;-)

Work is really frustrating the hell out of me at the moment; I'm a software developer who works on mobile apps but basically I haven't got anything challenging to do at the moment; just the usual day to day mundane stuff. I think I need a change, but I'm not sure what to try next. I wish my dad was here, he was good with career advise. Maybe you guys can help? I will write more when I get a minute.

Anyway, here's some pics from the Manchester Run, I enjoyed it, the crowd was fantastic as usual, but I'm a bit disappointed in my time -1:07- that's no improvement on last year although I was on IVs up until the day before the race so maybe they tired me out? I certainly found it a struggle after the first 5K. Rachel ran a good race and finished in 58 minutes although she was disappointed too, we're never happy ;-)

Friday, May 6, 2011

Breakthrough! and Sods Law...

As you may or may not know for the last two-three years I have decided to start doing more exercise in a bid to help improve/stabilise my lung function and to hopefully stop it declining between IVs.

This is now my 3rd year entering the Manchester Run and for the training I have been going for runs about 2-3 times a week without much enjoyment because I always got out of breath and had to stop every 2 minutes. But last week I discovered why: I had been breathing the wrong way (while I was running) I had been breathing the way I imagined athletes should breath -holding the stomach in and puffing out my chest, breathing through the top of my lungs (a bit like David Hasslehoff running across the beach in Baywatch ;-)) what happened was I would run for about 2 minutes then I would have to stop and catch my breath and start again.

Anyway, I read somewhere (embarrassing ;-)) that breathing through the diaphramatic or tummy breathing is more efficient for getting oxygen, and well, it seemed to work, all of a sudden, I had much more energy when I was running. Maybe now I can I can actually start to enjoy running and improve my running times?

Unfortunately, not at the moment because the entire family has caught a rubbish cold and I have had to go on IVs. I've also got a partial gastric blockage so running is too painful. There is also 9 days to go before the Manchester run, doh!

At the outpatients my FEV1 was 2.45. I was put on Ceftazadine, Tobtramycin IVs and Movicol for the blockage. Boo!...

Wednesday, April 20, 2011

Homage to Catalonia

Well, here's a book by George Orwell I should definitely read, all about the Spanish Civil war; the socialists, the communists, the fascists, the anarcho-syndicalists et al. The birth and death of political idealism...looks like powerful stuff. If I ever get around to reading it that is ;-)

Orwell served as a private in the Spanish civil war and it was these experiences that inspired his later books Animal Farm and 1984. Here's a quote, what's perhaps surprising is how relevant it still is today:

"He had learned a hard lesson,especially about the new political Europe. Totalitarianism, the new creed of 'the streamlined men' of Fascism and Communism, was a new manifestation of Orwell's old Catholic enemy, the doctrine of Absolutism" [21] - "the ghost of Torquemada had arisen, imprisonment without trial, confessions extracted under torture with summary executions to follow." [22] "The essential fact about a totalitarian regime is that it has no laws. People are not punished for specific offences, but because they are considered to be politically or intellectually undesirable. What they have done or not done is irrelevant."

Thursday, April 14, 2011

Manchester 10K run

Oooer. Time is getting very close (5 weeks!) to the next Manchester 10K run. I was getting really stressed about things (mainly to do with my dad's house and the delays in getting it on the market as well as the usual crappy work stress) and it was affecting my sleep. So my misses told me to have a run at dinner to relive the stress. It worked, although I felt awful at times while I was running. Coughing, spitting, burping (get awful gas in the top of my stomach while running sometimes) but it was worth it; certainly sorted my stress levels out for the time being.

I've spoken to my sister about the house and I think we're going to get the house on the market by the end of the month; there's just some stuff to move from the house to the garage, to tidy it up before the photos, and a complicated potential-death-trap ceiling-rose light system to install. So as long as I don't get electrocuted, I think we'll be alright ;-)

http://connect.garmin.com/page/activity/activity.faces?activityId=78953233

Friday, April 8, 2011

My word, you do look Queer !



I found an old 78 record belonging to my gran (In the olden days records would be played at 78 RPM rather than 45 RPM for singles and 33 RPM for albums) in my dad's record collection. I can't play it because I recently sold my record player, but I did find it on Youtube; it's from a set of funny monologues from the 1930s (originally performed on the radio or on stage in a vaudeville show) by Stanley Holloway and it has a particularly black sense of humour; it's hilarious ;-)


Monday, March 28, 2011

Grizedale Lakes Bike Ride in Pictures





So the score for the weekend is Woody 1, CF 0. Although CF will come back you can be sure of that. Unfortunately, there's only one good picture from the Grizedale trail we did on the weekend. The other one is of V's helmet after he took a tumble; at least we know why it's important to wear helmets. Also, looking at this main picture I have decided I really should not stand next to MB in any more pictures, he's about 6'2" and he makes me look tiny. ;-)

I cannot tell you how hard this was at times, especially towards the end of the 8 hour ride when I felt semi-conscious going down some of the hills with my shoulders aching. But it was worth it; my lungs felt really clean at the end of the ride (was coughing a lot at the start and brought up some nasty looking plugs halfway round) and at the end of the day it's good fun (most of the time!). Whenever I was struggling to peddle up a hill I tried to focus on some of the CF peeps out there that have gone through/are going through incredible fights on a daily basis with CF (Tori, Poozie, Angel, Kirstie and all) and I try and gain strength from knowing whatever I go through is nothing in comparison.

Not so sure about the pubbing/clubbing in the evening, Bowness is a bit towny, and I really couldn't be bothered...I think drinking is overrated. There was a girl/girl fight on the dance floor in one of the clubs (bouncers thankfully intervened before it got too nasty) that really freaked me out. I hate what alcohol does to some people...

Thursday, March 24, 2011

Patronised on Ebay!

Kids these days; should I be annoyed? I wouldn't mind but the thing I was selling from my dad's house only sold for 99p, the damn fiddly postage and packing to France cost £17...

Edit: I've decided to forgive him as he has offered to pay some money for red nose day because he feels bad for getting such a cheap bargain. ;-)

"Thanks for the "wrong" barcode 8-D LOOOOOOOOOOOOL
==)> not "LY215357443.......68"
but "LY215357443.......GB

Hopefully i'm used to buy in UK ... so i'm used to translate your two last numbers into corresponding letters ;o))
==)> i think you should go to bed by now ;)"

Tuesday, March 22, 2011

End of ABs and the real work begins

Sorry for this geek post ;-) Last week it was the end of oral antibiotics and my lungs felt better without feeling *deep down clean* the way they do with IVs, however if you compare these two races - then my all round fitness does seem to have improved since the start of the minging infection (March 8th was in the middle of the infection and I was coughing all through the ride, March 22nd is on a sunny day today 1 week after the ABs) so hopefully I'm on the road to recovery...

Back to Activities

Bramhall Loop

Road Cycling

Tue, Mar 22, 2011 12:09 PM

Bramhall Loop

Road Cycling

Tue, Mar 8, 2011 12:38 PM

Summary

Distance 7.52 km 7.21 km
Time 00:29:28 00:33:02
Avg Pace 03:55 min/km 04:34 min/km
Calories 225 C 310 C
Avg HR (bpm) 123 bpm 131 bpm
Max HR (bpm) 148 bpm 151 bpm
Avg HR (% of Max) 66 % of Max 71 % of Max


http://connect.garmin.com/activity/comparison?activityId=74473657&activityId2=71944384

Last week I visited the hospital outpatients and was seen by Proff Web, it was nice to have a catch up with the grand old duke of CF ;-) because I rarely see him in clinic these days (he's semi-retired I think, but certainly knows his stuff). In the end we didn't talk about the usual CF things like I would at a normal oupatients clinic, we just talked about the good old days when I first moved to the Adult CF Hospital and the progress of the VX-770 trial. I was a bit depressed about the potential cost of the drug, and whether NICE would be able to fund it, but I talked it out on the forum and now I feel a bit better about it. FEV was 2.65 and 3.2 which is a bit down; I'm hoping it's going to pick up as I pick up the exercise...

Wednesday, March 16, 2011

Ebay a go go!



I've started to put some of my dad's stuff on Ebay, I don't think we'll get much for it all but it's nice to know somebody will be able to use some of the stuff; especially his electric riser/recliner chair which I really hope somebody disabled will be able to use. Seeing some of his old stuff doesn't half bring back memories; he used to play D&D (dungeons and dragons) in the sports and social club at Phillips Hazel Grove. It's got something of a geeky reputation now but back in the day (before computers) it was popular in a cult way, there was at least as many women as men playing it in the group, at it's peak there were about 16 in the D&D group (AORTA: Association of reasonably trustworthy adventurers ;-)). We played it as a family too; my dad had read The Hobbit and The Lord of the Rings to my sister and myself when we were children and it really fired our imaginations, with D&D my dad as Dungeon Master would create a world similar to that in Lord of the Rings and we as characters in that world would have to negotiate our way through dangerous adventures...memories...

I've also got my mates to help out demolishing a rotten wooden outhouse and tidying up the garden, unfortunately there was so much thick ivy branches growing in the garden that taking down the ivy has demolished the fence! So now we need a new fence. We'll get there, hopefully by the end of the month because I could really do with putting the (emptied) house on the market so I can relax and forget about it. I'm not expecting it to sell straight away but at least if it's on the market there's a chance!

My sister has been working on the interior, it's not gone smoothly! The idiot she got in to do the decorating ending up giving the curtains away to a charity, so now everyone can look into the house and see it's empty. He also threw out the recycling schedule so now I don't know when to put the bins out! And he didn't actually finish the decorating job!!! Some people...

Friday, March 11, 2011

Wednesday, March 9, 2011

Dad's House





























Maybe his back garden has been a bit neglected over the last few years. I think I'm going to have to have a go at doing it up before we can sell the house...there is also all his stuff as well, just boxes and boxes of stuff that I don't know what to do with. Books, photos, letters, computers, electronics, crockery. Normally, I'd put it in my loft and think about what to do with it later, but I don't have a loft, we got it converted so Oscar could have a bedroom! Help...

Tuesday, March 8, 2011

Rough Week

Well, after the good news of VX-770 I was brought crashing straight back down to earth with a virus that cut out the middle man (nose and throat) and went straight onto my chest. So for the last week boat loads of sputum has been bubbling out of my lungs at night like mount Vesuvius. I rang up the Hospital and got them to fax an antibiotic order through to my doctors with the minimum of fuss. They're very good. I'm on Rifampicin and Ciprofloxacin, so I'll need to watch the mood swings and nausea...

On Sunday I went for a bike ride to try and clear some of the gunk. It wasn't pretty ;-) My mate was going to come with me but he had to cancel at the last minute. Just as well really, he would have needed counseling if he'd seen what came out of my mouth ;-). I felt really ill during but it was worth it afterwards because I did feel a lot clearer. My heart felt a bit fluttery for a few hours afterwards though, maybe it was a side effect of the antibiotics...

http://connect.garmin.com/activity/71646577

Wednesday, February 23, 2011

Good, no, Great news Day!





Hey, look I know this is only really good news for us G551D's so far; but Vertex are working on a correction for you Df508's as well, so fingers crossed. I'm especially hopeful that this will be of benefit for Rob from the CF forum who is fighting to get on the transplant list at the moment.

"Phase 3 Study of VX-770 Showed Profound and Sustained Improvements in Lung Function (FEV1) and Other Measures of Disease Among People With a Specific Type of Cystic Fibrosis

- Relative mean improvement in lung function of approximately 17% from baseline compared to placebo achieved by people treated with VX-770; mean absolute improvement from baseline of approximately 10.5% compared to placebo; both measures through 24 and 48 weeks -

- Significant improvements in all key secondary endpoints for VX-770; patients were 55% less likely to experience a pulmonary exacerbation, had significant reductions in sweat chloride and, on average, gained nearly 7 pounds -

- Discontinuations due to adverse events were less frequent among people treated with VX-770 -

- Data support Vertex plan to submit U.S. and European regulatory applications for approval in the second half of 2011 -"



http://investors.vrtx.com/releasedetail.cfm?ReleaseID=551869

Tuesday, February 8, 2011

Dreams of Dad

Had another dream about Dad last night, Can't remember the details very well. He had been admitted to hospital but he hadn't died, he had recovered but not enough to go home so we were organising a day out for him I think; then the dream changed and we were on a weekend break somewhere, but I got lost and was trying to retrace my steps back to the holiday home we were all staying at. In the dream we (dad and me) had a long conversation but I can't remember what it was about, I think he was just saying wise dad-type things and I was was talking back thinking yeah, he was really wise ;-) In another dream a few weeks ago I met his spirit while walking along a beach, later on I met my Gran's spirit and I tried to get his spirit and my Gran's spirit to meet so they could talk to each other and move on. In yet another another dream a few weeks ago we were talking on the phone, he was still living in Caterham down south and I told him I loved him at the end of the phone call, think I woke up crying at the end of that dream.

Maybe this is to be expected? Obviously not having my Dad around anymore coupled with the swiftness of his passing has left me with an emptiness (subconsciously and consciously) that will take some time to figure out. I was talking to my sister about it and she said when someone close to you dies it leaves a gap in your soul and your soul has to grow and change shape. It's similar to what happens when you have children, you have to change to become more responsible when a child arrives to that you need to look after - when Abby first came home from the hospital after being born I remember I was so nervous, the in-laws brought a bottle of champagne and after a few sips I started to get little tipsy and I immediately started to panic thinking "oh no, I can't be tipsy while looking after a baby) . My sister's very cosmic, if you hadn't guessed. She's also lived and worked in Peru near Machu Pichu; I'm very jealous ;-). We're trying to sort out his estate at the moment but it's not easy, he was something of a hoarder so he's kept every single letter he received for the last ten years, not fun trying to sort through it all.

Anyway, in the conscious world ;-), it's two of our friends' 40th birthday this Saturday, it's music based fancy dress. I was originally going to go as one of the Beatles but R wanted to go as a duo so we're going as the White Stripes. Gutted, I wanted to be John Lennon for the night ;-) Ah well, at least the costumes will be easy. Think I'd better start working out as well...

Friday, January 28, 2011

Exercise, fitness and fainting

So the snow has melted and with it the excuse to not exercise. Even though if it's still cold and it's hard work. For some CF reason my base (after a month of doing bugger all) fitness is a lot lower than everyone else in our bike club; so while they can get to the top of the hill and take nice pictures like this one, I'm at the bottom of the hill still cycling like a madman trying to catch up, grrrr! I will get there one day...

Monday, January 24, 2011

The lodger


There is a new lodger in our house. She is called Holly and she is very furry. Her previous owners were going to send her to a cat's refuge because their son was allergic to her, so we have stepped in. So far so good; she likes being stroked, she likes being picked up and carried like a bloated-furry baby ;-) , she likes being combed, and she definitely likes begging for tins of tuna when I'm making Abby's sandwiches. Also; she really doesn't want to stay in the house for the first two weeks so keeps trying to escape whenever we open the front / back doors.

Because we don't know whether our kids will be allergic we have laid down some ground rules: no sleeping on beds, and Abby must wash her hands after stroking and picking up Holly. I do like having a cat around, they're good company, even if cleaning out litter trays is a bit of a pain...

Wednesday, January 12, 2011

Gallons of rubbing alcohol float down the A6...

Well it was our turn to host the New Years eve party this year, so we bought a karaoke machine, loads of wine and beer, and made 3 huge currys (on new year's eve) to feed the screaming hordes. We dispatched our kids to the in-laws, but some of our mates were bringing their kids so we set up the Wi in the front room for them to play. Everyone enjoyed the party, especially the karaoke; I never knew our friends were such frustrated rock stars ;-) Was a good night, at least until someone found the absinthe. Anyway, on balance, having been on both sides now, I think it's much more relaxing going to someone else's party! It's too much of a stress trying to work out whether you've got enough food / drink for everyone. In the end we made too much, but that meant we had lots of leftover curry to eat for the next few days ;-)

The party was a bit controversial because two of our mates are in the process of getting divorced, and because they (G and N), are currently ignoring each other, this meant we could only invite one of them because if we invited N, then G would refuse to go, along with his mates. I'm trying not to get involved and just hoping they can patch things up for the kids really, (their kids are the same age as Abby and Oscar.) When did life become so complicated? Also someone (not me) decided to invite an old school friend of mine who I've not seen since I left school some 2o years ago! I was a bit worried at first that he might turn up mob handed or something, but in the end he arrived and was more nervous than me, stayed for a couple of beers and a brief chat about the old days, and left; so it was no big deal really. Sometimes I think you drift away from friends after school for a reason, and maybe some blasts from the past should be kept in the past. My sister is adamant she never wants to get in touch with anyone from her old school and I kind of know what she means...

I don't know, but as the years go by I seem to be enjoying alcohol less and less, maybe it's the hangover / comedown, or (since the kids have arrived) any gleeful piss up is tempered with the knowledge that I have to be awake the morning after to entertain the children, but I don't enjoy it half as much as I used to. Maybe my body's getting old ;-) By the end of new year's day I was ready to go to bed at 8PM...I'm wondering if this is a CF thing, but every time I drink heavily, the next morning my lungs have much thicker mucus to bring up, and in the case of major bender, it can take a couple of days for the sputum to return to it's normal, more manageable thickness. I can also get terrible guts the next day as well. Alcohol sucks! Never again will I get drunk... ;-)