Turn, Turn, Turn

The old man requested this Judy Collins cover of Pete Seeger's song be played at his funeral about a month ago. Ah, he was well into his sixties folk :-).

His funeral was last Wednesday and leading up to it I was dreading the whole thing. In fact when we parked up behind the hearse outside the chapel and the funeral directors got the coffin out I was really paniky and freaked out, but halfway through the service I felt sad but somehow serene. If he was there in spirit then I think he was telling me it was OK to move on, let him go, and not to be too sad. I'm going to miss him loads though, even though he was house bound in recent years he was still a big part of our lives.

Dad

My dad died peacefully on Tuesday 13th December, 4.30 PM. He was 65. It was only the week after his birthday and on his 65th birthday we all went round and he told us (my sister, my mum and I) how proud he was of all us and his four beautiful grandchildren; we talked about lots of things (including the Tibetan book of the dead, Greek legends and all sorts) and it's just such a shock that this would happen because he was really upbeat. We talked about what he would have for his Christmas meal. (He wanted trifle!) I'd just set him up with a new digital recording box for his birthday and he seemed really happy.

He went into hospital Saturday evening with breathing problems, when I rushed in to meet him at A&E (I'd been on a night out so had to get a train and R had stepped in to help him out and persuade him he needed an ambulance) he was struggling but he was also talking about the City game in the afternoon and how crap one of our strikers was. His breathing seemed to settle although he was on O2 he seemed to barely need it. R went to get him some clothes and turn his fire off and at about 11 I left him to get some sleep just before he was moved onto a ward. When I got home the hospital phoned and told me to come back straight away. Shortly after arriving on the ward he had had a massive aspiration into his lungs, and he just never regained consciousness. We kept hoping, but in the end he was just too weak to come back from this trauma. In a way I think it's what he would have wanted, he hated being in hospital, he didn't want to end up in a home, and he kept his independence to the end, which at times was a real battle for him.

My dad had Myotonic Dystrophy; it wasn't diagnosed until he was 50. it's a form of muscular dystrophy and it was complications from this that led to his death. He had had his ups and downs with depression in the last five years due to becoming more and more housebound as the illness began to restrict his mobility and limit his ability to eat. In fact this year I was giving him half my Scandishakes (he was on Ensures as well) to help him keep his weight up. We talked about tube feeds and neck operations but he was too old and stubborn, he didn't want anything like that.

His mind was so sharp, he was a clever guy, a funny guy and he loved life. I hope the ongoing genetic research can one day eliminate awful, horrible, unfair conditions like this.

Mum and dad got divorced when I was 18 but after it had all blown over they stayed good friends and for the last years she helped with his shopping every week and they'd have a good natter.

I'm going to miss him loads and I'm really sad but I think he'd rather we remembered the happy times and I think he enjoyed life; he had great friends, family. He had two great jobs. He was a genius at micro chips/silicon chips. With his jobs / holidays he got to travel the world, he visited every country in Europe and most states in America. he got to ride the pacific highway from LA to San Francisco. He lived in Manchester and London, in London he lived in Caterham in a lovely house near the south downs with fox cubs at the bottom of the garden.

Love you dad.

xxx

Broken

My dad's currently fighting for his life in hospital, I was with him when he was admitted but he deteriorated after he moved wards. He's currently stable but he's unconscious and it doesn't look good. Going to get some sleep and say some prayers.

Love to all xxx

Impatient at the outpatients

It's been a while. Sorry. It's not you, it's me. I've had a lot going on, and I've been unable to articulate the thoughts in my head with any degree of clarity. I can't guarantee clarity anytime soon either. But I can guarantee it will be pretentious ;-)

Dah, well, I've had been feeling pretty good about health, life and fitness for the last few months, but cometh the winter, cometh the downturn. It all started about three days before my outpatient appointment, I'd been thinking how lucky I was to avoid getting a cold what with the entire population of greater Manchester having coughs and colds, when I actually came down with a cold; for the first three days it was just a bog- standard nose/throat cold, but on the fourth day, when my cold symptoms started to ease, the virus started to move onto my chest and my rubbish CF lungs started responding in their usual way by producing the thickest, gunkiest gunk this side of the Exorcist.

By the time the outpatients appointment came it was a complete no-brainer as to whether I needed IVs, so my cannula line was fitted and I was putting the IV boxes in my car ready to get on the home-IVs bus. At least that would have been the case if my Ultrasound appointment hadn't overrun so long that by the time I'd ran upstairs (on an empty stomach, stressed, and unseen!) to the CF outpatients it was already too late to get started on IVs, Arghhh! Note to me myself and I: if I have two appointments at the same time, one an ultrasound and one a CF outpatients then definitely go to the CF outpatients first! Anyway, I can't stress enough how professional my CF team are; when I told them what had happened. They ordered me some food, got me a cup of tea and ordered my prescription ready for the next day. Also, whenever I go in and say I need IVs (admittedly not that often, touch wood ;-)) they always agree with my judgement and just get on with the whole process with as little fuss and stress as possible. Makes it a lot easier for me. Blows were down some (FEV1 2.55) as expected, but I could feel that anyway with the increase in sputum and night coughing. I was going to do some running and biking this week to help with my physio, but with all the snow and ice, it might not be the best idea...roll on thaw!

I also have some stressful things going on at work, with my mates, and with my family, but I am all moaned out, so it will have to wait till another day ;-)

Oh Bramitob: We are so disappointed....

To give a bit of background, I started on Bramitob a week after I'd come back from holiday in Ibiza. I don't know about you, but holidays in hot countries always seem to have a good effect on my chest, and I usually feel clearer and dryer while I'm there; whether that's down to the dry air or the sea air I'm not sure; although the last time I blew a massive 3.3 it was straight after a week by the coast in Wales in the middle of the summer. Maybe the NHS should pay to send pwcf off for a week in spain every winter, it'd be cheaper than IVs and perhaps just as effective? Just don't tell the Tories, or the Daily Mail ;-) I also finished off an old course of Cipro I had after the holiday to make doubly sure my lungs were squeaky clean for the test.

Anyway, I went to the hospital to do the first neb of the trial with the physio (they do this just to confirm there is no sudden drop in FEV1 an hour after the first dose of Tobi) After a few blows, all was well, in fact halfway through I figured out my blow technique has been all wrong (I was blowing too hard) and thanks to that (relaxing and blowing slower) I was able to comfortably blow 2.9; great! so all in all there was no ill effects after the first dose.

For the first week all was well, apart from a slight sore throat and the Bramitobi tasting of cheese. I even went on a solo mountain bike ride (both my mates cried off with excuses) in the rain with no obvious problems. However; by the second week, I was starting to get both a tightness and a wheezy rattle. And also, there was something I couldn't quite put my finger on; even though my sputum was thin and white, it was as if the sheer volume of sputum I was producing was starting to increase, to the point where it was causing me breathing problems. My long-suffering misses even complained that I was breathing noisily or "weirdly" in the night (and I hadn't been drinking either ;-)) So after consulting with the phsiotherapist (and the ever knowledgeable Telamere, who was also doing a similar trial) I decided to stop it.

Gutted, it's meant to be a lot more effective than Promixin and can even reduce the amount of IVs you need. Ah well...

Son of Tobi: Bramitob

Earlier this year I trialed Toni through the INeb with less than spectacular results (my chest got wheezy, gunky and crappy and I ended up on IVs) Was that down to the Tobi or was that down to a virus, the cold, icy winter and weight loss? I've done Colymycin nebs for many years now with no problems and I've done Dnase since the mid noughties.

Whatever anway, the CF Manchester team did suggest we retrial the Tobi with a different, isotonic brand to see if it that would have a better effect. I'm just starting a months trial of this. so far so good but it tastes like parmeggiano cheeses (or smelly socks); I'm not sure which. Or is it goat's milk? 3 days in and OK so far. I've decided it doesn't taste like Parmeggian cheese, it's more like milk that has been left out of the fridge too long...the physio said they'd made an attempt to improve on the taste of Tobi as well. I'm trialing the Bramitob in a Pari compressor nebuliser and it takes about 5 minutes. The only downside is I need to deliver it near a window to avoid exposing the family to concentrated Tobi mist, and it's freezing! ;-) In trials Tobi is rated to be much more effective than Colymycin in blitzing pseudomonas which is one of the reasons I'm quite keen to get back on with this.

To Be Continued...

Ibiza In Pictures

Chicken Curry

Well, as it stands, I'm not sure whether we're gonna make it to Ibiza this weekend. Oscar has got chickenpox three days before the flight so we'll just have to see...anyway in the meantime this is my submission to CF Talk's food issue:

Woody’s Quick Chicken Curry Recipe (Serves 2)

Ingredients:

• Chicken Legs/Thighs (4-6 pieces, leave on the bone)
• Onion (chopped)
• Garlic (1-4 cloves to taste, chopped)
• Ginger (small piece, peeled and chopped)
• Chillies (1-4 to taste, chopped)
• Tin Chopped Tomatoes
• Whole Garam Masala mixture, (ground with a pestle and mortar or spice grinder)
• Vegetable Oil
• Rice

Instructions:

1. Add the oil to a non stick pan or non stick casserole dish.
2. Add the chicken pieces and lightly fry them for 2-3 minutes until they are golden (no need to cook through)
3. Take them out and put them in a bowl for later
4. Add the onions, fry for 2-3 minutes until golden brown
5. Add the freshly ground garam masala. The frying pan should be hot enough to heat the spices through so that the lovely flavour really comes bursting out.
6. Add the garlic, ginger, chillies. fry for a minute
7. Add the chicken back in
8. Add the chopped tomatoes, add water to taste (the more water you add the longer it will take to reduce down to a thick sauce)
9. Bring to a boil, put the lid on, turn the heat down and then simmer slowly with the lid on for about 30 minutes.
10. You can check the chicken is cooked through by skewering it with a knife down to the bone; if the juice runs clear, you’re sorted.
11. For the rice, get one cup full of rice, two cups of water should do for 2 people.
12. Add to a saucepan, bring to a boil and then simmer for about 10 minutes when the rice should be ready. Stir occasionally to make sure it doesn’t stick.

This is my basic student curry recipe and it probably saved me from malnutrian when I was a student. I like chicken on the bone because it has more flavour and doesn’t dry out like chopped chicken can. You can adapt it in loads of ways; if you don’t want chicken on the bone? Chop it up. Want it with lamb or beef, fish or prawn? No problem, just remember lamb or beef may need longer to get tender, and don’t over cook the fish. If you want to add mushrooms and peppers, go for it. Want to add yoghurt or chopped coriander at the end? Simple, but turn the heat off and stir the yoghurt in really gently. You can buy ground Garam Masala from the shops but it loses it’s flavour really quickly so I would always recommend the whole spice version. You can pick up the whole Garam Masala mix from most supermarkets these days and all Asian grocers sell it.