Thursday, December 24, 2009
Happy Christmas to all and to all a good night!
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Monday, December 21, 2009
Went to the hossy last week. It was mainly for a checkup with the phsio about how I had gone on with the Tobi trial last month. To my grumpy annoyance the blows were the same (FEV1 2.85 / 3.8) but she said that was a good thing; the important thing in the first month of the Toni test is to make sure that the volume does not fall, as that would indicate some kind of allergic reaction (to the Tobi) was going on. She did notice I had a wheeze at the end of the spirometry blow, so we discussed me going back on Uniphyllin to help combat it. So anyway the plan is next month to ditch the crappy old Pari Neb and start on the Tobi trial through the iNeb next month. (on a one month on, one month off basis) By then the outpatients will have moved from the Heart area to the new outpatients above the new super Pearce ward. (where it is alleged you can watch Sky Sports and get foot massages...I should be so lucky ;-))
I've also got the notes back from the doctors telling me what my Genotype is: G551D/N1303K.
Other news, Oscar has been really poorly for the last week with a D&V tummy bug, which promptly spread to R, her in-laws, and finally, me, despite washing my hands continuously and rubbing with alchogel afterwards (I now have the hands of a 100 year old man!). Being ill I've not really eaten for 4 days and I feel like that skinny guy out of Twilight (only not as tall)
Anyway, on Sunday it properly snowed in Stockport for the first time in years, so we took Abbby sledging down the golf club, and she loved it. Later on though we nearly got snowed in at the in-laws house when the roads froze and all the cars going through the village couldn't get up the hill to get out. For a while it was like vehicle civilisation had ended and we were back to doing everything on foot! Me and R were serious about settling the kids down at the in-laws and doing a 6 mile snow hike back home in the dark to get supplies and then walk back in the morning, but by the time we went back down to the village, the temperature had risen slightly and the snow was beginning to melt. I was slightly disappointed, but only slightly, because my legs were already beginning to stiffen up after walking for 20 minutes in the snow, so god knows what they would have been like after 2 hours plus. Would have been romantic though, it's great to be outside at night in the snow, everything is so quiet because the snow absorbes all the sounds, and covers all the hard edges, I just love it.
Anyway, everyone seems to be on the mend, so bring on Christmas!
Friday, December 4, 2009
- Chest infections. Oscar was on ventolin and (banana flavoured) Amoxicillin after a virus he picked up last week moved onto his chest and gave him a chest infection. By yesterday his breathing was really-really wheezy, laboured and clicky, you could tell there was loads of gunk down there, and he just wasn't himself, he would play for a minute or two, but then he would roll around on the floor screaming until he was picked up. (carrying a 21 pound toddler around all day is a bit of a strain on the back!) I phoned the emergency doctors and the nurse on the phone who filters the calls before giving you an emergency appointment was a real bitch; I tried to explain to her what the situation was but she kept interrupting and cross examining me like I was in court or something, I felt like saying "look I have CF and I know what a chest infection sounds like, if my chest was as bad as Oscars I would be checking myself into hospital for some IVs!" Anyway, we eventually got referred to a doctor who agreed he had the startings of a chest infection, we then had to dash across town to get to a 24 hour pharmacy in Fallowfield. We then gave him the ventolin and amoxicillin (with a baby spacer to breath the ventolin in with) and in the morning he seemed to be a lot better.
- Constipation / blockages. Oscar was on lactulose for being blocked up, but then he seemed to get things under control. Then after another week or two he went and got really blocked again so he was put on Movicol, twice a day, decreasing to once a day when his bowels settled down.
Here's some pictures of me and Oscar clowning around in the supermarket on the day he had his chest infection. He was fine in the morning while we were shopping then he went downhill really fast in the afternoon. Then he was much better in the morning. Kids eh?
Wednesday, November 18, 2009
Anyway we arrived late at night at the hotel and everyone went straight to bed.
Sunday, we caught a taxi back to the airport and were back in Manchester late Sunday morning. Maybe we should have stayed longer but Abby may have found it too exhausting!
Tuesday, November 17, 2009
(Edit - I've added some explanantions. Sorry for the pretensiousness ;-)
PJ Harvey – Stories from the City, Stories from the Sea
I am a massive PJ Harvey fan, and am completely incapabale of objectivity where she is concerned, but this is the fabulously positive album that all non-PJ fans should own.
Radiohead – In Rainbows
Their best album since the era defining albums of "The Bends" and "OK Computer" fromthe previous decade. For some reason this fact seemed to get lost amid the hype of the way it was sold. I really need to buy this album proper because owning the mp3s isn't really enough for me!
The Strokes – Is this It?
Quite simply redefined indie guitar rock for the rest of the decade. The deceptively simple blend of 2 guitars and bass blew everything else away even if it did sound a bit like Blondie and Television from the late seventies. And "Last Night" was *the* song of the summer of 2001.
The Killers – Hot Fuss
Just a really exciting indie / pop album from 2004-2005.
Yeah Yeah Yeahs – Fever to Tell
The best of the second wave of NY bands that appeared after the Strokes. And Karen O is hot as well ;-)
Elbow – The Seldom Seen Kid
Mancunian local boys finally come good after years of being second best. "One day like this" is one of the most positive songs ever.
The White Stripes - Elephant
Proof that if you have some decent songs then you don't really need anything other than a guitar, a voice and some drums.
Grandaddy – The Sophtware Slump
A great album with some heartbreakingly beautiful songs about the breakdown when technology meets nature. Could anybody else write a song about an alchoholic android (Ged!) and make it sound so sincere and tragic?
The Streets – A Grand don’t come for free
A rap concept album. Wtf!? But when it sounds this good...
Amy Winehouse – Back to Black
Such a shame that Amy Winehouse is now more famous now for being in the tabloids than for being a great singer songwriter. Check out her debut album "Frank" as well, there's some great songs on that as well.
Badly Drawn Boy - Hour of the Bewilderbeat
The hype around the Twisted Nerve record label and BDB reached such a fever pitch amongst the lo-fi cool kids (I wasn't one ;-)) in Manchester around 1998-1999, so much so that when this finally arrived in 2000, it seemed a bit of a dissappointment. In hindsight, I was wrong; it's a wonderful record. Such a shame his career hit the skids so soon afterwards.
Saturday, November 7, 2009
Wednesday, November 4, 2009
I had heard that Tobi was inhaled once a day, but for the monthly trial I will be nebbing twice daily with an old compressor neb (like I used back in the 80s! Doh!) You take it twice a day and also you need to nebulise Ventolin before it to stop the possible bronchiectasis. that'll be fine in the evening when the kids are in bed, but I will struggle to fit that into my morning schedule, which consists of getting showered, doing a bit of physio (in the shower), getting breakfast, getting Oscar and Abby dressed and fed, and dropping either Oscar or Abby off at nursery / school before work. I think I'm going to have to use the iNeb for Dnase in the car on the way to work, which I don't really like doing as it's not safe and I could get pulled over. The physio also said I should neb Tobi in a ventilated room away from the kids. Hum. Looks like I'm getting up even earlier in the morning...
Anyway enough moaning! I actually felt quite loose in the chest after the trial tobi neb so hopefully I will see some real benefit when the month is over.
Friday, October 23, 2009
We arrived in Boston late on the Friday and caught a cab straight to the hotel where some champagne was waiting for us in the room, we then stumbled around looking for a restaurant (I wanted to try an Afghan restaurant around the corner but R fancied an Italian so we eventually found one inside another hotel after going round in circles for what seemed like a long time ;-)) and then we were truly knackered so we went straight to bed.
In the morning the view from the hotel looked a bit too much like Manchester; cloudy, grey and raining but we decided to make the most of it, went to the shopping centre next door to buy a couple of rain coats for the baseball and then set off on the freedom trail. The freedom trail is a redbrick trail that starts off in Boston common and takes in loads of historic sites relating to the American revolution and the historic break from Britain, and the shaping of the American government and the constitution and bill of rights. It was interesting but I felt a bit funny as a British tourist reading about the British army being vilified and the British parliament hated for their taxes! (I think the paper tax, a tax on all forms of paper was the last straw!) In the guide book the walk was supposed to take 90 minutes, but when we did it it took us most of the day, we did stop for lunch and go into some of the state museums though. Beware when ordering lunch in diners/restaurants; sometimes the portions are huge! Me and R ordered a couple of basic pasta dishes from an Italian diner and the plates that came with the meal were enough to feed a family of four; we would have been better off ordering one meal between the the two of us! It is true what they say about America, if you are there for a long period you would easily put on at least a stone...
When we got back to the hotel it was time for a quick shower before going to see the Boston Red Sox on the Metro; R had always wanted to go to an American baseball match since I can remember. The match was good, The away side (The Cleveland Indians) started off well but the Red Sox seemed to have a bit more quality and after a massive score with a home run with 3 other players on the bases in the 3rd period they always looked the likelier winner (if that makes sense to anyone let me know, I'm not sure I understood it ;-)) Baseball is much more of a social affair than the football we have here, there's lots of chatting through the match and a constant procession of boys carrying food above there heads shouting "Clam Chowder! I got Clam Chowder Right Here" and "Hot Dogs! Get your hot dogs here" So you can scoff your face through the match without having to get up! I've got to say the local clam chowder is worth trying especially if you need warming up on a cold night!
On the Sunday thankfully the weather was brightening up. We decided to book the whale watching at Boston harbour; it's a three hour round trip and apparently it can get a bit hairy if the sea is rough. Thankfully for us it was a beautiful day and there were plenty of humpback whales around. They are quite breathtaking to see close up. When they surface they do a really loud exhale creating loads of steam -they exhale something like 90% of the air from their lungs so they can take a deep breath before diving back down- humans exhale 25% to give you an idea of the super-FEV1 that a humpback whale must have ;-)
On the way back we had a wander though the City, I was going to buy R something nice from Tiffany's but we didn't find anything she really liked so we decided to console ourselves in the Cheers bar. As you might expect it is a bit touristy in there. On the last (half) day we got a quick coffee and bagel (or cwoffee and baygel as they say in Boston) and had a wander around Harvard trying to look intelligent (!) before a last meal in the Cheesecake factory (desert is literally 100s of different flavours of cheesecake) and then home. I've got to say I really like Boston, there's less to do than in New York, but the people seem friendlier, and there's more of an old colonial/British-Irish feel that made me feel really at home. We missed the kids terribly though!
Thursday, October 15, 2009
Anyway, I need to blog more but I'm too busy at work! Here's some 70s psychedelia from the Flaming Lips, haven't got any of their albums but I may buy this new one. I love the bassline!
Wednesday, September 30, 2009
Monday, September 28, 2009
Thursday, September 17, 2009
Thursday, September 10, 2009
I also asked what my two CF gene's were (they couldn't find it in my notes; they'll get it for next time) and what my CRP level was, apparently the last one was 5, and it was 6 when I had my last set of IVs in summer, although it can get as high as 40 when I have a really bad cold and chest infection. Otherwise I'm going to make an effort to get out and get some exercise on the unused mountain bike that's been in my shed/garage for the last ten years; this summer some of my mates have turned into mountain bike bores; seriously, the last time we went out for a drink it was *all* they talked about, I was not impressed! But I guess if you can't beat em you may as well join them, I'm not going to talk about bike magazines in the pub though ;-)
Wednesday, September 9, 2009
I was diagnosed when I was 9 thanks mainly to the persistence of my mum and to the doctor who finally decided not to fob us off and referred me for an x-ray. From the x-ray they thought I had TB so they put me in an isolation ward for a month, when the TB test came back negative they did the allergy scratch test. Finally they did the sweat test, and on the second sweat test I was diagnosed. Looking back all the signs were there; every winter I would pick up a cold and it would stay on my chest for weeks or months, I would produce sputum by the bucketload. From the age of 7 I started to lose weight noticeably. When I was a toddler my mum frequently complained to the docs about my farts smelling wrong and I used to get the runs from time to time, presumably because of the amount of undigested fat in my system.
This was back in the 70s, and in those days no one had heard of CF, The yellow pancease tablets (Pancreatin? I honestly can't remember the product name) were rubbish, and the wisdom then was to go on a low fat diet (skimmed milk and no chocolate, is it any wonder I rebelled? ;-) I was also put on regular Flucloxacillin, which I more or less take to this day.
I think back in those days I had mainly Staphloccocus on my lungs. It wasn't until about 12-13 that I remember the word Pseudomonas being used regularly by the docs. I generally went into hospital for IVs about 3-4 times a year. The doctor would first give me oral antibiotics but when they invariably didn't work I was put on IVs through a cannula (the cause of many a trauma, although thankfully they always did the job in clearing my lungs) As a kid I can remember thinking/feeling that my health was sliding, but halfway through secondary school my health seemed to stabilise, I think this was down to a combination of Creon becoming available -which helped my weight gain, coupled with teenage testosterone kicking in which helped me with exercise (I should probably give the hospital credit here for the IV courses as well, although they weren't appreciated at the time as you can probably imagine). I seemed to get better at sports, took part in the 10K a couple of years running. When I was 16 the doctor let my mum do IVs at home. I have always done IVs at home since then. When I was 18 I was referred to the fledgling Manchester CF Unit, then in Monsall Hospital.
When I was 25 I got hospitalised a couple of times with major DIOS gastric blockages. The second time was quite scary as I was in for a month and it didn't seem to clear and surgery was mentioned. Thankfully it eventually cleared. The DIOS was caused partly because my pancreatic function was declining and had finally reached the point where Creon 10 was no longer working properly, I switched to Creon 25 and things gradually got better. I also started taking salt tablets, especially in the hot weather. Over the years I've become quite good at spotting the early signs (stomach pains) of DIOS and hit it with the Kleanprep early doors.
And that's it really. I'm now 37. I still have IVs about 3 times a year. I got married when I was 27 to a wonderful woman. We tried IVF for 5 years but it wasn't to be, so we decided to go through the donor insemination route and now have two beautiful kids, 1 and 4. Luckily my LF has stayed pretty stable throughout (it's about 80% atm). DNase made a big difference to me day to day in reducing the sheer volume of mucus produced, I also do Colymycin twice daily. I have no idea how I would do nebs without the Ineb, as it allows me to run after toddlers while inhaling. I think my health has been more stable when I have more weight on; I look back at some of the photos when I was a student and I look scarily thin, I feel like going up to my skinny-ass younger self and saying "eat some pork pies."
Monday, September 7, 2009
Tuesday, August 25, 2009
Oscar is struggling to poo. For the last few weeks he has been painfully straining throughout the day, we'll check his nappy and find nothing in there, except the occasional pea-sized rock-hard stool. It sounds funny but the pain is sometimes so bad that he howls in pain, it's not fun to watch. We finally took him to the doctors last night and he has been put on lactulose.
On top of this my dad is getting quite poorly. He has a genetic muscular disease called Myotonic Dystrophy (MD). It's not very well known, the symptoms are similar to muscular dystrophy but they tend to present themselves at different stages of someones life, in my dad's case he didn't really have any symptoms and wasn't diagnosed until the age of 50. He's now 64. Because of this he does have weaker arms and legs, but he has been managing to get about his bungalow OK and he has been managing all the problems admirably well. The big problem for him at the moment is that the muscles in his throat are getting weaker so it getting harder for him to chew and swallow food, which is why he's turning to liquid foods more often. It also seems to be slowing his digestion down. He is now on supplements to stop him losing weight (Fortisip, BuildUp, Scandishake, all the things familiar to PWCF!) and he is
also taking lactulose to help move his digestion along (again, familiar to PWCF although I've never actually been prescibed it myself) We're going to organise another Occupational Therapist visit to see if there is anything that can be done to help. I just feel so helpless really, I wish there was something I could do to help repair his muscles and help him to enjoy his retirement, he's a very clever guy, he loves travelling, he's worked hard all his life, I just wish he could enjoy his retirement in the proper way.
I feel really gutted about what happened to Vicky from the CF Forum. She went into hospital about six months ago for a simple port operation. However that didn't go smoothly and after that it just seemed to be one horrible thing after another. The pain she must have gone through I can't even imagine, or maybe I'm just too scared to imagine. I also guess I feel relieved that my version of CF isn't as bad, and it makes me so angry that someone so young should have to go through something like that.
Friday, August 21, 2009
The cold virus from last week has moved onto my chest with a vengeance, and my daft CF lungs have responded in their usual fashion by creating pints and pints of goo. Bleuuurrr. Last night my head felt really woolly and I still feel a bit nauseus and spaced out; I also had a slight temperature. I don't think it's because I'm coming down with anything; it's just the sheer amount that I've been huffing through the day (which also makes me tense my neck and shoulders) that I've given myself a headache. I've put myself back on Uniphyllin to try and stop my chest getting tight, so hopefully things will improve in the next few days...I also can't use the Creon tubs as spit pots anymore because they've gone and changed the shape, so I'm using plastic cups in the car, which are minging because they're transparent. Moan, moan, moan....;-)
Edit: 2 Days Later. I've decided my symptoms are down to some kind of stomach bug, mainly due to the mild nausea and bloated feeling at night, coupled with aching limbs, especially at night. I'm also a lot more tired than usual, which all chimes with previous symptoms I've had a few years ago. ( No D&V this time though, thank god! )
Anyway, I heard this on the radio the other night. I don't know anything about early Fleetwood Mac apart from Rhiannon, but I thought this song was really beautiful. Stevie Nicks has a great voice. She's hot as well ;-)
Wednesday, August 12, 2009
- NME's best British album of all time revealed
- The Stone Roses' self-titled 1989 debut album has been voted the best British album of all time in a Sunday newspaper poll.
- In 1989 the critical response was generally positive and today the album is widely considered to be one of the very best British albums released.
- The Stone Roses' eponymous first album has been voted best album of the last 50 years by listeners of the BBC digital station, 6 Music.
- Reni is considered by many to be the best drummer of his generation, and the "single most important drummer in UK indie circles"
Gonna add a link here to a guitar part I never learnt. Kids have it easy these days, at the time the only way to learn songs was to sit with your guitar forever stopping and starting a tape player to learn a riff by ear, this could take hours and even days. nowadays you've got ready made lessons on youtube!
Tuesday, August 11, 2009
In the last couple of weeks, both Abby and Oscar have had their birthdays. Oscar is now 1 and Abby is now 4. (photos to follow.) In September Abby will be leaving her nursery and starting infant school. This is both brilliant and a little sad for me because I feel like she is growing up faster than I can keep up; she'll also be leaving the aunties and some of the friends that she's been with for the last 3 years.
Oscar is now very close to walking, and has taken his first few (unsupported) steps. His favourite pastime is emptying the kitchen cupboards of all their contents, including the cereal cupboard, noooo !
Wednesday, July 29, 2009
Seeing the vid really makes me miss playing in the band; we split up a couple of years ago because we all had other things going on in our lives and possibly because of that we just lost momentum really. I think M (The singer) had a real gift for writing songs; the rest of us just added the sonic film-flam around his songs. Anyway; I am for hire, if only I can find a band that needs a guitarist...
Tuesday, July 21, 2009
We (Abby, Oscar, and me) have got colds at the moment. Oscar's terrible case of imaginary CF (;-)) continues; he's got a chest infection at the moment, if I put my ear to his chest I can hear the phlegm bubbling up, poor guy. R took him to the doctors yesterday as he was quite fed up, just not himself, with a slight temp. He's been put on a 5-day course of Amoxycillin. Because it's for kids it comes as a lovely yellow banana-flavour medicine. He doesn't like it though, and he's taken to spitting it out onto my work shirts, which now have lovely yellow stains on them ;-) Abby and me aren't too bad, I've just got one of those almost-colds that doesn't have full blown symptoms yet. I've run out of Vicks First Defence though, I couldn't get any at the supermarket either, I think it's sold out with all the concerns over swine flu. I don't think we've got swine flu (touches wood) though, the doctor said that the symptoms of swine flu present themselves very quickly and are quite severe, with persistant high temp. Roll on the immunisation jabs I say...
Thursday, July 16, 2009
Menorca came and went in a blur of sun, sea, sand, swimming pools, hyperactive children and more annoyingly hyperactive reps. We stayed at the Victoria Playa hotel, which was very child-friendly and did some really nice (half board) buffet food. The buffet was a bit bland but they did do some more adventurous traditional Menorcan dishes like tapas, lobster soup and a tripe casserole with chick peas and chorizo. Abby did OK with the food because there was a kids buffet section with chips, beans and ice cream. Oscar took a fancy to the french baguettes, they helped with his teething. I was eating like a king; a cooked breakfast every day with danish pastries, toast, something with chips for lunch and a full three course meal in the evening couretesy of the buffet. I swear a normal person would have put on half a stone after 6 days on that diet; I'd just gained 1 pound when I got back, Grrrr ;-)
The pictures below are from when we hired a car for a couple of days and went up El Toro, a mountain in the middle of the island with a church at the top. On a clear day you can see the whole of the island. from the top. We also went to the two main port towns on the island; Ciutadella and Mahon, they are both well worth visiting for their fantastic architecture. As for the kids, well, Oscar was a real handful (crawling everywhere, opening and closing doors, ripping up other peoples Heat magazine, putting our plane tickets down the hotel toilet, etc) and Abby had a great time, she's getting very confident in the water, diving underwater in the swimming pools and even ventured out quite far in the sea. She didn't quite get into the social side of things with the other children until the last couple of nights though. The only complaint I'd have is the rooms, they were a bit cramped with Oscar in a cot on one side of our bed and Abby in a single bed on the other side. This meant that we always woke up early because whoever woke up first would always wake everyone else up...
Well, ho hum back to work and I'm still ridiculously overworked doing two people's jobs. I'd complain if I wasn't so pathetically thankful of having a job in this recession (another friend of mine has just been made redundant and he's been working for the same company for 20 years+
Anyway, to cheer me up, here's is a little video of Abby's new favourite "wash up" song as she calls it (The Boy Does Nothing by Alicia Dixon), they play it a nursery at the end of the day when they're tidying up :-)
Sunday, July 12, 2009
Wednesday, July 1, 2009
Went to the hossy today for the end of my IV course. remarkably the cannula stayed in despite all my (and Abby and Oscar's) efforts to make it fall out ;-). Blows are slightly less than what I would have hoped :( FEV1 2.9 FVC 3.85. I think I seem to get more out of the first week of IVs, although my chest is definitely clearer now. While the new doc went out to check my blood level results I had a look at my previous blows and apart from a magnificent 3.3/4.3 back in 2006 (post IVs and post 3 days in Wales by the sea), they've stayed pretty steady (from 2.9-3.0) when I'm well, can drop to 2.4 when I have an infection. Maybe it's wrong to obsess too much about FEV numbers, perhaps how we feel is more important ;-) Thank god for Immodium though! IVs always give me the runs these days, but taking two immodium tablets every day gave me surreally normal bowel movements while I was on IVs and even carried me through a mortal weekend on the lash in Blackpool. I'm starting to pay for it now though, now I've gone "cold turkey" on Immodium (this is an accurate analogy, because Loperamide is an opioid-receptor agonist, it basically dopes up the gut -like opium- to slow it down, luckily or unluckily depending on your point of view it doesn't cross the central nervous system like other opiates)...Oh yeah, the high para-protein levels of last month (I Googled it and it suggested scary complications with bone marrow) are probably spurious and nothing to worry about, and that is Proff Webb approved, so good news :-)
Right, it's panic stations because we're off to Menorca for a week of sun, sea and sand this weekend (maybe we should just stay here, it'll probably be colder over there) and I haven't even thought about all the things to get for packing. Some things I've done last week are:
- Gone clubbing in Blackpool with a cannula in
- Decided clubbing in Blackpool was pretty grim.
- Played a golf course with a terrible hang-over and a tubigrip over my cannula
- Lost over half a stone in sweat on the hottest day of the year on said course
- Had a really bad round after I pulled a muscle in my arm and decided to never play golf again because it's poo.
- Decided mountain biking and running are much better things to do than golf.
- Lost my jacket bought for me by my misses in the hotel in Blackpool, I've phoned them up but they can't find it, waaahhh!
- Vowed never to drink again because it turns me into a cretin the next day ;-)
Tuesday, June 23, 2009
"The love song of J. Alfred Prufrock: T.S. Eliot
S’io credesse che mia risposta fosse
A persona che mai tornasse al mondo,
Questa fiamma staria senza piu scosse.
Ma perciocche giammai di questo fondo
Non torno vivo alcun, s’i’odo il vero,
Senza tema d’infamia ti rispondo.
LET us go then, you and I
When the evening is spread out against the sky
Like a patient etherised upon a table;
Let us go, through certain half-deserted streets,
The muttering retreats
Of restless nights in one-night cheap hotels
And sawdust restaurants with oyster-shells:
Streets that follow like a tedious argument
Of insidious intent
To lead you to an overwhelming question …
Oh, do not ask, “What is it?”
Let us go and make our visit.
In the room the women come and go
Talking of Michelangelo.
The yellow fog that rubs its back upon the window-panes,
The yellow smoke that rubs its muzzle on the window-panes
Licked its tongue into the corners of the evening,
Lingered upon the pools that stand in drains,
Let fall upon its back the soot that falls from chimneys,
Slipped by the terrace, made a sudden leap,
And seeing that it was a soft October night,
Curled once about the house, and fell asleep.
And indeed there will be time
For the yellow smoke that slides along the street,
Rubbing its back upon the window-panes;
There will be time, there will be time
To prepare a face to meet the faces that you meet;
There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;
Time for you and time for me,
And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.
In the room the women come and go
Talking of Michelangelo.
And indeed there will be time
To wonder, “Do I dare?” and, “Do I dare?”
Time to turn back and descend the stair,
With a bald spot in the middle of my hair—
[They will say: “How his hair is growing thin!”]
My morning coat, my collar mounting firmly to the chin,
My necktie rich and modest, but asserted by a simple pin—
[They will say: “But how his arms and legs are thin!”]
Do I dare
Disturb the universe?
In a minute there is time
For decisions and revisions which a minute will reverse.
For I have known them all already, known them all:—
Have known the evenings, mornings, afternoons,
I have measured out my life with coffee spoons;
I know the voices dying with a dying fall
Beneath the music from a farther room.
So how should I presume?
And I have known the eyes already, known them all—
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?
And how should I presume?
And I have known the arms already, known them all—
Arms that are braceleted and white and bare
[But in the lamplight, downed with light brown hair!]
It is perfume from a dress
That makes me so digress?
Arms that lie along a table, or wrap about a shawl.
And should I then presume?
And how should I begin?
Shall I say, I have gone at dusk through narrow streets
And watched the smoke that rises from the pipes
Of lonely men in shirt-sleeves, leaning out of windows?…
I should have been a pair of ragged claws
Scuttling across the floors of silent seas.
And the afternoon, the evening, sleeps so peacefully!
Smoothed by long fingers,
Asleep … tired … or it malingers,
Stretched on the floor, here beside you and me.
Should I, after tea and cakes and ices,
Have the strength to force the moment to its crisis?
But though I have wept and fasted, wept and prayed,
Though I have seen my head [grown slightly bald] brought in upon a platter,
I am no prophet—and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid.
And would it have been worth it, after all,
After the cups, the marmalade, the tea,
Among the porcelain, among some talk of you and me,
Would it have been worth while,
To have bitten off the matter with a smile,
To have squeezed the universe into a ball
To roll it toward some overwhelming question,
To say: “I am Lazarus, come from the dead,
Come back to tell you all, I shall tell you all”—
If one, settling a pillow by her head,
Should say: “That is not what I meant at all.
That is not it, at all.”
And would it have been worth it, after all,
Would it have been worth while,
After the sunsets and the dooryards and the sprinkled streets,
After the novels, after the teacups, after the skirts that trail along the floor—
And this, and so much more?—
It is impossible to say just what I mean!
But as if a magic lantern threw the nerves in patterns on a screen:
Would it have been worth while
If one, settling a pillow or throwing off a shawl,
And turning toward the window, should say:
“That is not it at all,
That is not what I meant, at all.”
No! I am not Prince Hamlet, nor was meant to be;
Am an attendant lord, one that will do
To swell a progress, start a scene or two,
Advise the prince; no doubt, an easy tool,
Deferential, glad to be of use,
Politic, cautious, and meticulous;
Full of high sentence, but a bit obtuse;
At times, indeed, almost ridiculous—
Almost, at times, the Fool.
I grow old … I grow old …
I shall wear the bottoms of my trousers rolled.
Shall I part my hair behind? Do I dare to eat a peach?
I shall wear white flannel trousers, and walk upon the beach.
I have heard the mermaids singing, each to each.
I do not think that they will sing to me.
I have seen them riding seaward on the waves
Combing the white hair of the waves blown back
When the wind blows the water white and black.
We have lingered in the chambers of the sea
By sea-girls wreathed with seaweed red and brown
Till human voices wake us, and we drown."
Friday, June 19, 2009
The doctor was new as well, is it just me or are the doctors getting younger and younger? I have to admit the first thing that runs through my head when I see a new doctor is "Oh god, can he/she fit a cannula?" I don't like being the guinea pig to some inept youth learning how to find a vein (Andy Jones was particularly bad for the first year I remember ;-)) I always get my IVs fitted on the big vein that runs at the back of my arms, I can do left or right, but obviously the left is more practical because I'm right handed. Other than that it was just a normal IV visit; cannula went in OK, after an initial scare when it stopped bleeding back. Standard procedure (for me) is to give me the first dose of Ceftazadine and Tobramycin, to check if there are any allergic reactions and then go round the back of the pharmacy to pick up the boxes of IVs. At that point I was going to ask the CF specialist nurse about Laura but then I decided against it; it would probably put her in an awkward position as she wouldn't be allowed to say anything due to patient confidentiality, and then I started to question why I wanted to know more in the first place. Anyway, before I knew it I was driving back with plastic bags and boxes of bottles, bungs, needles and syringes. I've put it all by the side of my bed. The Tobramycin dose has changed from 4ml twice a day to 7.5 ml once a day. I'm taking some kind of immodium variant as well because IVs seem to give me the runs these days.
I then discovered that I'd run out of needles for the Tobramycin finger-prick-test so I foolishly decided to do it with a normal green IV needle. I attempted it four times but the blood was not forthcoming so I had to ask the long-suffering R to do it for me. She didn't hold back, in fact it was a bit of a painful gusher, Ouch! No masochist, me ;-)
Tuesday, June 16, 2009
We've had four good years together; she's been there in my hour of need, she told me all about this great new drug called Dnase. We went travelling together, to Croatia, California, and Shanghai, she's never let me down (apart from America where she decided to run out of batteries halfway through the trip damn it.) But now, our relationship has run it's course and the end is nigh (sniff.) It's time for me to replace my old Ineb. And try the younger and smoother model...
OK, I think I've took the analogy a bit too far ;-) Anyway, first impressions; the new model unfortunately looks exactly the same (no sleek redesign by some young idiot like Ben from the Apprentice), but the original jaw-rattling shake it did when you breath in (sometimes so fierce you would end up droping it if you weren't holding it) is now a lot gentler and quieter, the beep is different too. I love my new Ineb ;-)
Me and R went to see the Doves on Saturday in Delamere Forest. They were great, the sound was really good. The field in which they played was like a natural outdoor audiorium. We left just before the last song to avoid getting stuck in the car park on the way out. Not very rock and roll but when you get all night baby sitters you have to make the most of them ;-) In out defence we did get to hear the final encore "There goes the fear" as we were walking back along the woodland path. Magical. Another obscure fact: I saw these guys play back in New Years Eve 1999 at the Night and Day cafe (Manchester), on that night they were the unsigned backing band for Badly Drawn Boy and were most famous for their early 90s hit under the name Sub Sub.
Thursday, June 11, 2009
Monday, June 8, 2009
Where's the glorious summer gone? Here are some pictures from the BBQ we went to last week, it was so hot I actually had to go in the shade in the middle of the day. P.s. now the Apprentice is over what the hell am I going to do with my Wednesday nights? For my money Kate was the obvious winner but Alan Sugar always picks the one you don't expect (Ruth Badger, Claire, and the Irish Lady from series 3 were all better candidates than the previous winners IMHO) I thought that Kate had got the better idea on the day - I mean some of Yasmina's chocolate flavours sounded disgusting. I think if Kate had got her price down she would have won. I was surprised at the outcome because in the final Kate's performance overall was much better - she seemed more organised and focused early on whereas Yasmina struggled to get her idea off the ground, totally ignoring any initial advise given. I'll have to apply for next year :-)
Friday, May 29, 2009
Roly also asked me about Oscar and whether I had been keeping up with my meds which slightly annoyed me as I've been pretty good with my compliance generally, but then he went on to say that CF women who get pregnant can have a fine LF during the pregnancy but can then slip after the pregnancy as looking after a baby takes it's toll. I explained that the Ineb was brilliant for this because it meant I could feed Oscar a bottle of milk while also doing my Ineb and put it down while I was doing other stuff like getting Abby's breakfast, etc. I guess he's only looking after my best interests, maybe lack of sleep is a factor. He also questioned my request for a prescription for a four-pack of Kleanprep, I told him it was just in case I got another bowel blockage when I was unable to attend clinic (like at the weekend) as I didn't fancy going into A&E and explaining what CF and DIOS was while my guts were kicking seven bells out of me.
Roly also mentioned that my annual blood results contained a higher than normal level of paraprotein, so they took some more bloods off me. When I asked him what this was associated with he said it's not associated with CF and it's probably nothing. I promised myself I wouldn't google it but then I did. I really hope it's nothing now :-(.
Haven't heard this for a while I've lost the CD. It's a great song and video, inspired by Bagpuss, I think ;-)
Tuesday, May 26, 2009
Anyway, on with the show. This weekend we went camping in Waterside Farm, a *really* nice lakeside campsite by the side of Ullswater. There was a lovely lakeside path that is an hour long walk into Pooley Bridge, a picturesque village to the north of Ullswater. We met up with G and N and their two daughters who are about the same age as Abby and Oscar, and to my relief Abby and M got on pretty well and were soon playing make believe princess games together, not too many arguments either ;-). We had a very relaxed time of it, although in the evening we ended up drinking far too much beer and eating far too many cheap supermarket BBQ burgers at the campsite long after the kids were all tucked up in their beds. It was a good laugh though; G and N are funny, I personally hadn't laughed so much in ages, although I'm afraid most of the humour was of a low (i.e. lavatorial) tone ;-) We put the kids in loads of layers of bedclothes because it gets really cold in the middle of the night in a tent. I'm sure I feel the cold much more as I get older, the cold never used to bother me in the old camping days.
Anyway, the good news is that Oscar went camping for the first time and he passed with flying colours. He only woke once for 5 minutes the first night, and he actually slept all the way through the next night, something he doesn't manager very often at home. We should go definitely go camping more often, especially when the weather was so good!
Wednesday, May 20, 2009
After some brief and, with hindsight, inadequate stretching it was time for the race to start. My plan was to take it easy for the first 5KM and then try and pick up the pace towards the end; I had heard that the best way to run a race is to start slow and finish fast, the idea being that you keep some energy in reserve for the later parts of the race. That was the plan anyway, in the end I just didn't have enough energy left! I started running with R, but I had told her to leave me behind if she was feeling confident because I didn't want to hold her back. I managed to keep pace with her for the first 5KM before I began to feel the effects of drinking too much isotonic juice before the race and had to duck behind some bushes near Old Trafford to relieve my aching bladder (I would have happily relieved myself on the stadium, but security might have had a thing or two to say about that ;-)). When I came out I could see R in the distance but I decided rather than knacker myself out trying to catch her it would be better to try and concentrate on running my own race at my own (slower) pace. The race was quite well supported and there was music played along the route, including a float with DJ Clint Boon (folk hero from old Manchester band Inspiral Carpets) knocking out some old 90s rave tunes to give us old timers a boost (no kidding, hairs stood up on the back of my neck as I ran past!) Towards the end of the race I began to struggle quite badly, and rather than keep to one pace, I started to do bursts of running followed by walking, which thinking back was probably why I pulled so many muscles. I also didn't do any proper stretching; when I trained I would start by running for 500M to warm up, then do my stretches; (and try and bring up all that horrible upper gut wind ;-)) but on the day of the run I was too excited to stop running until it was too late and the damage had already been done. Towards the end of the race there was a car wash style run-through shower to cool the athletes down, but by then it had started to rain, so it hardly seemed worth it. After that it was down to the final 2K where I could see the big Hilton tower looming in the distance near the finish line, but thanks to my aching legs it seemed to take me an eternity to reach it. Thankfully we all had some help from the crowd who geeing us all up. Crossing the finish line felt great, (I must have looked a sight, soaked wet through with snot streaming down my nose, and my hands shaking so much it took me 5 minutes to figure out how to open a bottle of water ;-)) but pretty much as soon as I finished I became aware of how freezing and wet it was. We had planned to hang around for a bit after the race if Abby and Oscar were up for it, but with the weather being so rubbish we decided to head back home for showers and pizza.
We were in the pink wave, which I think was mainly full charity runners, and I did get a bit emotional before the race seeing all the other runners, some of whom had pictures on their shirts of the friends and family they had lost and were now running for, and it got me to thinking about Toria and Poozie and the others on the CF Forum, whose brave fights had made me want to do something like this in the first place. I'd made a point of writing Poozie's name on my arm to help with motivation (for which I got told off by Abby later on in the day "We don't draw on our arms, Daddy!"), and although I'm not a particularly religous person, I did feel I got some help along the way. I did spot a few CF Trust runners along the way, as well as a big group from the North West Lung centre (which my CF Unit is part of), but I didn't recognise anyone from outpatients. Anyway, after all the sponsorship comes in we'll have raised more than £400 for the CF Trust between us :-).
Some tips for first time runners: (i.e. don't do what I did ;-))
1) Try and train for at least 2 months before the race, 4 months would be even better.
2) Do proper warm ups and stretching on the day of the race.
3) Don't drink too much before the race.
4) Try and run the distance (at a slow pace) at least once a couple of weeks before the big day.
5) If you're a bloke then don't wear boxer shorts. They chaff, owwww...
Friday, May 15, 2009
Edit: For some reason the video overlay is a bit wrong, I need techy help on this one...
Friday, May 8, 2009
Before the kids arrived me and R did quite a lot of camping (as long as the weather was nice, fair weather camper, me!). Our favourite place to stay was the Lake District, although The Isle of Skye (and Glen Nevis) comes a close second. Over the years we've probably stayed at most of the campsites in the Lakes and my enjoyment tends to come down to whether it's sunny or not. We also used to do a fair bit of fell/mountain walking. I used to hate the start of the walk, being really grumpy, hungover and chesty after an uncomfortable night in a cold tent; but gradually, as we neared the top, I would feel better (I would also bring up a heck of a lot of phlegm on the way up ;-)) and I'd feel really elated as we finished the walk (the first pint in the pub after you've finished tastes fantastic as well ;-))
Anyway, this is a long-winded way of saying that last weekend we took Abby (and Oscar) to the Lakes for the first time. We stayed near Grizedale forest in Hawkshead near Windemere. We also took Abby and Oscar on a little walk in Grizedale forest (I carried Oscar in the backpack) and Abby had a play in the wooden play area at the start of Grizerdale trail, a place that's very popular with mountain bikers. We decided rather than take a chance on the weather we would book a place in a Youth Hostel (surprisingly nice, actually more like a cheap hotel with bunk beds) and leave the camping till June/July) Oscar is now crawling all over the place; he's a real handful! And he's put on loads of weight after putting that ill spell behind him. Has some allergies though, nursery rang me up today because he got a rash after eating a casserole with peppers in it.
Time is getting very close now for the Manchester Run, (next Sunday) we've been training 2-3 times a week; R has been running well but has got a massive blister, I've got no blisters but I've been struggling with the running part. This is mainly due to horrendous stomach pains and trapped upper-gut wind that is so painful I have to stop running and try and bring the wind up. I've upped my omeprazole on the days when I run and this seems to be helping, I just wish I had another month or two of training to go and then I could maybe get a reasonable time...
Thursday, April 30, 2009
Got round to my sisters at around about 7.30. Then had to wait around as no one was in. Our kid was a bit late, she had to pick up a babysitter for her two boys, and a takeaway...she's always late anyway, even before the kids arrived. For some reason time is an abstract concept to my sister which she doesn't really believe in ;-) "No problem", I said to myself, trying not to panic. All gigs I've been to follow a standard pattern: Doors open at 7.00, support comes on at 8.00 main act comes on between 9.00 to 9.30, that is the law. As long as you get there before 9.00 you are guaranteed to see the main act. I helped get her two gorgeous boys out of the car, but couldn't help glancing at the clock on my phone while J and her mate had a leisurely vegetarian (falefal :-)) kebab. Anyway, we arrived with about 20 minutes to go and had time to meet up with some of J's friends inside the Ritz on the balcony...
I've been into PJ Harvey since my sister took me to a gig in back in 1995, (the "Pink Catsuit" tour) which completely blew me away, and I've been a fan ever since. Since then I've always made an effort to go to every tour and dragged my sister and mates along. I remember at the time (1995) I had been on my back for days with a gastric blockage, not eating (in those days I *wrongly* assumed I had food poisoning, it was only a chance conversation with Charlie, now at Papworth, at the CF Clinic that made me realise my symptoms could be related to CF), nowadays kids have the internet, how lucky they are! Thankfully it cleared before the gig and I remember how struck I was by the comparison in my health; going from two days of sweating, starvation and pain, to just feeling normal again and being able to enjoy simple pleasures like eating, drinking, walking and stuff, I'd never appreciated before how good feeling "normal" was, and how much I took it for granted in the past. Perhaps it opened my mind and made me appreciate music a lot more as well.
It's fair to say that me and my sister were pretty blown away by Polly and John, as were most of the audience. It was an intimate venue, and she has a great stage presence, really captivating the audience with her performance. PJ's strength, I think, is her ability to utterly inhabit the songs and become different characters with different songs. The songs were all off the latest album and the previous collaboration from 1996, Dance Hall at Louse Point. For the two albums, John Parish writes all the music (then sends this to PJ on a tape), and she scratches her head and writes the lyrics. It works well. They opened with the first (and only ?) single of the album, "Black Hearted Love", a jazz/blues inflected rock number, easily the most radio-friendly song on the album, before we were into the spookier songs on the albums like "16,14,13", a spine tingling "look who's missing" song about missing children in a garden with no laughter. Indeed, a lot of the songs are almost like spells that she casts over the audience, utterly captivating them. I was most impressed with how good the live version of some of the more *difficult* songs were; In the terrifying Captain Beefheart influenced "a woman, a man walked By", She screams "Chicken Liver Balls, Chicken Liver Spleen" at her male suitor before graphically depicting sodomizing her hapless victim; not exactly easy listening! And the scary "Pig Will Not" that on the album sounds like a PMT-driven howl of rage. But live, somehow, with the drums, bass, rhythm, and guitars cutting loose, it all made sense. Not that it's all shocking, there were some lovely, quiet, torch song moments like "The Soldier", a compassionate song (I think) about the dehumanising effects of war, "Leaving California" possibly about her brief stint in LA, and the gorgeous, poetic "Cracks in the Canvas" that could be about coping with losing someone. And the fantastic, indescribably uplifting "April" which they closed the set with after the encore. All the songs were completely at odds with the cosy chatter that PJ gave to the audience between the songs. "I've stood on something prickly" she said in her unaffected, strong Dorset accent (think Pam Ayers), as a loose splinter caught in her bare foot. And, heart melting "I just want to say, all I can see in front of me is a sea of lovely faces, lovely, lovely!" Really, I could just put her in my pocket and take her home for tea ;-)
Anyway, enough pretentious fan-boy droning from me! I think she's easily the greatest female artist (singer-songwriter) of the last twenty years, and has paved the way for other artists to follow their own musical path; but some of her albums do take a few listens as my misses will confirm! I would probably direct newcomers to her mercury prize-winning "Stories From The City, Stories From The Sea" that is the album that I can get away with playing at parties ;-)