Thursday, November 27, 2008
The INeb. It's just an improvement on what we already had, but compared to the small motorboat sound of the compressor neb, for holidays, and for doing nebs whilst looking after a hyperactive 3-year old who is into role-playing Walt Disney films it's a must. I do think it needs "sexing" up though. For starters there's the colour, I mean hospital blue, come on! Lets have it in chrome, or black to go with my shoes or (for the ladies) handbags. The shape could also be smaller and curvier as well. If it was the size of a mobile phone then it would be fantastic.
Here is my drug list for the weeks holiday:
Creon 60/day = 5 tubs
Flucloxacillin 4 /day
Rifamplicin 2/ day
Sereride 2 / day
Uniphyllin 2 /day
Colymycin 2 /day
Emergency Stomach Blockages:
I haven't had a stomach blockage on holiday yet (touch wood.) but I always take the Kleanprep just in case. Over the years, for me, holidays and a handful of beaten up bags of Kleanprep have become inextricably linked.
Last night I had this intense anxiety dream where I had received a lung transplant but had forgotten my daily dose of anti-rejection pills, and so my new lungs where burning up because they were being rejected. In the dream I was like "Oh my god! I've received this wonderful gift and I've f*cked it up!" What can it mean? I suppose this makes a change from the dreams where I am late for an exam for a subject that I haven't done any study for...
Oscar is now 13 pounds and 2 ounces. We have decided to start "cutting" his breast milk with formula at night just to see if this helps him to sleep longer. The theory being that formula milk takes longer for babies to digest so leaves them feeling fuller for longer. It didn't work last night though. Dammit ;-).
Monday, November 24, 2008
Had a look around the CF Quarter of the room for tell tale signs of CFers: breathless guy to my right, check. Guy with sinus problems to my left, check. Girl with skinny legs in front of me, check -must be in CF outpatients! I must say that since I joined the CF Forum, I've been a lot more paranoid about cross infection, so I didn't bother reading any magazines, and I just listened to my mp3 player with half an ear out for Pauline. And made a point of washing my hands as I left. Then got paranoid about touching the door handle of the toilet after I'd washed my hands; Arrrghhh! this way madness lies...The FEV spirometry machines were being wheeled from room to room by bemused looking doctors, I don't think Pauline, Roly, Andrew, Jenny and the rest looked particularly pleased with the new location; they looked as confused as the patients at times. Blows were OK-ish 3.1/4.1 (don't know what that is in percent, probably 80%-ish) although I had been feeling slightly wheezy all week, probably down to the cold/damp Manchester air. As a result of my recent interest in CF ;-) I did ask Dr. Helm whether I had recently grown staphloccocus (no) and pseudomonas (yes). She told me it is usual for PWCF to be colonised by pseudomonas, because even though it is sensitive to antibiotics, it creates a tenacious biofilm, some of which remains after the intensive IV antibiotic treatment. Staphloccocus is more transient, so is in theory easier to get rid of. The strange thing for me was that I knew this already and was 99% sure I had grown "pseudo" since about 12 but it was still a bit unsettling to hear it said to me aloud.
Anyway, I have decided to wage war on the biofilm with garlic and apples. And to enter the Great Manchester run (with R) next year, which is for CF, and hopefully the training should improve my chest. I'm not looking forward to the cold night runs though, and I don't think I will get a good time. Got my holiday pack for our long awaited holiday to Egypt next week, although for some reason the antibiotics are Rifamplicin and double-dose Azithromycin, which are about as much use as a chocolate teapot when it comes to clearing chest infections, so fingers crossed I don't catch anything on the flight to Sharm-El-Sheik. Will have to make a travel med-list and order presciptions before I go (groans...) To say I'm looking forward to going away in the sun for a week is an understatement but Oscar has really been playing up this week (waking up every two hours at night) and Abby has been wandering into our bed at all hours in the night so I am a bit concerned about what will happen when we are all in one room. Abby is very excited about the Camels though ;-)
Friday, November 21, 2008
"I have learnt a lot here, there are whole wild days where I can feel erudition flowing into me until every border along the fabric of my being is overcome with an ecstatic saturation whereupon it is all I can do to hold myself together and not shatter with insurmountable glee!
There are other days when I spend long glittering hours staring out of high windows wondering exactly how far it really is to fall, and if perhaps it would be best to let my broken body shatter spectacularly upon the pavement with pools of viscous blood gathered around me like blooms, rather than continuing upon a path that is so utterly refuting of it’s end destination.
I like both equally."
Quite a writer. Capable of anything. I didn't know Toria personally, although I had read her eloquent, hilarious, and above all, honest blog, and her posts on the CF Forum. Toria died after a combination of CF, multi-resistant Pseudomonas, and a bitterly ironic surgical mishap put her into ITU. Whilst she was a vocal advocate for PWCF getting ports fitted, her lung was accidentally punctured during a routine fitting of a portacath. Her long battle in Brompton ITU was updated almost daily on the CF Forum, at first I ignored the updates, unwilling to get involved in something so heart-breaking, but then I was drawn into it, hoping against hope for any scrap of good news that somehow justice would be served and one of the brave and good people of the CF Community would recover. Finally, after a long and valiant struggle her poor old lungs could no longer hold back the flood of bloody multi-resistant pseudomonas. Toria leaves behind a gorgeous 10 month old son and partner. I welled up every time I held Oscar for days after I heard the news. It was just so unfair, taking someone so young when they had so much to live for. Things like this make me seriously doubt the existence of god and any higher purpose to the universe. Maybe Dawkins is right and it just is what it is. All I can say is that if there is an after world then I will want a seriously good explanation from whoever is in charge as to why Toria had to go so soon. But then she would probably do a better job of telling off whoever is in charge herself.
My deepest sympathies to her family and friends. RIP Toria. Thank you for teaching me not to take anything in life for granted. xxx
Edit: I have since read Toria's incredibly positive eulogy from her and her sister and I think this post has come across as too negative, which I didn't really intend. Here is a link to the eulogy, it is well worth reading.
Wednesday, November 19, 2008
We had a "curry and cocktails" party with some of R's old school friends the other day. As they were arriving at 8 this involved a mad panic trying to get the kids bathed, fed and into bed before 7.30 in order to give us time to tidy up, get changed and research how to make cocktails. This is what we came up with.
3 parts Gin
1 part Cherry Brandy
1 part Lemon Juice
Verdict: Fizzy Cough Medicine 4/10
2 parts Vodka
1 part Cointreau
Verdict: Doesn't quite live up to the Sex and the City hype, but good 7/10
Salt on rim of glass (forgot)
Verdict: too sour but that could be down to running out of ice and the confusion of the cocktail makers! 4/10
DJ Dunley's Mix
Verdict: A Surprisingly smooth made up drink! 8/10
DJ Dunley's mix was made by A after the curry because we had run out of decent cocktails to try. I suggested an Absinthe-based cocktail but no one was particularly keen ;-). I have to say we must all be showing our age, because in the old days someone would have suggested we start a tequila shot drinking game and someone (i.e. me) would have inevitably ended the night throwing up in the can. These days we're a much more sedate bunch and everyone seemed to get more excited about the curry takeaway. Anyway, it was nice to have some friends round for dinner, something we haven't really done since Oscar was born.
Grrrrr! Someone from my work has made off with my unopened pack of pork pies which I left in the fridge. I am on the lookout for someone overweight who is not Jewish!
Monday, November 17, 2008
It's a shame Oscar won't remember her. I think Abby will. Most Wednesday's R would take Abby (and now Oscar) to visit great-grandma (with her mum) and do her shopping. Abby would have a whale of a time revelling in all the attention and showing off her latest ball room dancing moves. (I had a sneaking suspicion that Abby was great-grandma's favourite, but don't quote me on that.) I guess this is one of the things about grief; the loss of the shared events that define who we are, in this case the weekly meeting of four generations of women from R's family.
One of the things now is how to explain death to a 3 year old? Somehow I don't think "resting in peace" or "happy in heaven" will cut it with Abby. It's funny at times like these I want to believe in things like heaven and an afterlife, like many Mancunians I have some of that Irish Catholic in me and I *do* find the church comforting and spiritual, but as to an afterlife; the truth is I just don't know, I'm still figuring it out, and it could all be it's just a construct us human beings have created to try and bring some comfort and moral certainty into what would otherwise be an infinitely perplexing and indifferent universe. All I can do is try to keep my answers as simple as possible, avoid euphemisms, and maybe leave religion for another day.
On the way to pick up R from the hospital yesterday, R's dad asked me "Do you know the way to the hospital?" I could only laugh in reply. After driving/catching a bus there every 3 months for the last 15 years (including one time when I had a cripplingly painful stomach blockage) I think I could probably find my way backwards. On a horse. I've got a check up at the newly reconstructed Wythenshaw CF outpatients on Wednesday, hope everything is well in chest land.
Wednesday, November 12, 2008
- Being from Manchester "The Stone Roses" are a big part of 90s folklore. They were good, it's a such shame they imploded so soon.
- It reminds me of being forced to listen to my Mum's extensive Billy Joel album collection on camping holidays in the car ;-)
The best thing about mash ups is they take two tracks from completely different musical worlds and make something completely new and unexpected out of them. I want to have a go! If I can just figure out where he gets the acapella stuff from. Stop the press! Oscar has only woken up once during the night for a feed (for the last two nights.) Hurrah!
Spliced Krispies, GHP's Full Album
Saturday, November 8, 2008
Abby and me watched the Wizard of Oz today (while Rachel took Oscar to the shops in search of clothes for a perpetual dribbler), it was embarrassingly enjoyable but Abby got very scared of the wicked witch so we decided to go outside for a walk in the autumn leaves instead. I sung Somewhere over the Rainbow to her, I don't think she was very impressed (!) but she did join in. Later on me and Rach managed to get both kids sound asleep in bed at a reasonable time. This meant we had time to catch the end of the X Factor with a Mango Lounge takeaway; Laura has lost proving once and for all that the general public have no taste although her version of "Somewhere over the Rainbow" allegedly chosen by mentor (!!?) Cheryl Tweedy was pretty dire. Great voice though. I blame Mariah Carey for having such a pants back catalogue.
We have recently found out that Abby has an imaginary friend called Jordy. I just hope I don't start seeing Jordy or I really will have to cut down on the Ceftazidime.
Thursday, November 6, 2008
Well, after a year of promising, I finally got my finger out and took my 6 year old nephew Robin aka Robinho to his first football match. I think he enjoyed it, he didn't get bored until the last ten minutes of each half although he did ask a *lot* of questions, "Which side are we?" "How do we score a goal?" "How many points do we have now?" "I want Stoke to score!" "can you die playing football?" I was exhausted just trying to answer him, never mind walking to and from the match. Anyway we won (not always a given for our beloved Manchester City, especially when you take someone for the first time) Fair play to the Stoke fans they kept on singing even when they were 3-0 down and the banter between the fans was good.
I still don't like the new Eastlands stadium; it's in a grotty area, the locals seem to despise us, the stadium feels synthetic, the beer is too expensive, (the staff are clueless and don't make a load of pints before half time like they used to at Maine Road), and the walk from the car is too long. Our old ground Maine Road was at times a dysfunctional place that beat you as much as it fed you, but it was authentic, it felt like home (and the curry mile was a five minute walk away if you needed warming up ;-)). I guess it will just take time to get used to the new stadium. It was freezing at the match though, time to get out the winter coat and long johns out if I go again before the end of the year.
Wednesday, November 5, 2008
The Kings of Leon have also finally clicked with me although for some reason it is "Because of the Times" that I'm listening to at the moment. Maybe next year I'll be listening to their current album...I don't go to Glastonbury anymore but I was quite jealous when I saw these guys on TV, almost made me want to get covered in mud and brave the "toilets" all over again...
and "Arizona", the best song on the album: (IMHO)
Saturday, November 1, 2008
I hate rotten pumpkins. Especially ones with 1 inch of white fungus growing on them. Lots of kids from our street came round early on to trick or treat - Abby almost got into it; she's very shy but she kept peeking from behind the living room door to see the procession of witches and skeletons; which was nice. The pumpkin didn't hold out very well though, and I still have two big bags of eclairs left over which I wasn't able to give away...guess I could always store them in my stomach to keep them safe ;-). Didn't have a great night's sleep but at least Abby made up for it by being extra cute in the morning.