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 ;)"

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...

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...

Kids last month in pictures

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...

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

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

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...