Thursday, 28 February 2013

A Little On The Cool Side

Welcome to my new look blog. If you were reading yesterday's blog you probably saw a range of different colours, styles and additions being added, changed or removed. I'm sorry if it caused any confusion but it had to be done. My blog was looking a bit dull and dreary and I wanted a fresh, vibrant new feel to it. Those of you for whom English is not a first language will find I've added a translator, which just about covers all the main languages and a few others. There will be a few tweaks over the coming days and weeks but the overall look should stay as it is.

So back to the saga of the central heating. Engineer number three stayed for almost four hours and we have heat upstairs again. There is also heat in two out of five of the downstairs radiators but sadly this does not include the living room or kitchen, only the two rooms we use most. It is now looking like a blockage and there is talk of flushing the system but we have to sit an wait for a few days first as the new pump might well sort it out by itself. So if heat is not restored to all radiators downstairs by Friday, or the heat goes off again, we are to call them and that is what they will have to do. Brilliant!

Well with nothing else lined up for today we are going to spend it out and about. So far is it dry, above freezing and there is even a little bit of sun so we thought we'd grab our chance.

First thing is a visit to an Alfa Romeo dealer in Hemel Hempstead to take a look at the Mito. My car, an Alfa 156, is getting on a bit now and as much as I love it, it is too big for the daily commute. I have to say I've been very lucky with this car as it has never let me down but the worry is that as it gets older there is more likely hood something will and I'll end up stranded on the roadside somewhere. So I'm biting the bullet and starting to look around, after all with the kids gone I don't need a big car anymore, as long as my trike and the shopping can fit in the boot that's all I really need.

Next up a nice relaxing pub lunch to discuss what we've seen and just relax a bit after a stressful couple of days. Then this afternoon we are trawling around the charity shops looking for books and anything else that takes our fancy before heading into the shopping center for a good browse and maybe a treat or two.

In the news, or at least in the newspapers, loads of adverts from supermarkets announcing how they are now sourcing all their meat from British farmers. Not wishing to be funny but isn't this what they should have been doing in the first place? If they had they may not be in the mess they are in right now.

Also in the news a very pleasant chap who told a charity worker that all disabled children should be 'put down' as they were a drain on finances. What is even worse this delightful man, a councillor in Cornwall, was at an equality and diversity event when he made the remark. Collin Brewer has now resigned from his post and apologised stating that he was under stress when he said it. Unfortunately for him we tend to show our true characters when under stress and his is obviously deeply unpleasant.

Well better get my glad rags on and get going. And hopefully I'll return to a slightly warmer house.

Wednesday, 27 February 2013

Three Wise Men

Well two heating engineers later and we still don't have heat downstairs.

The first one arrived early yesterday morning, decided it was our three way valve, replaced it and waited for the radiators to heat up upstairs and then left. By midday we were back to square one, no heat anywhere. The second engineer turned up at seven in the evening and left around nine after replacing the pump and managing to squeeze a little bit of heat into the radiators downstairs. We woke up this morning to find no heat downstairs and only tepid radiators upstairs. Peter is not happy and I'm back in my thermals wishing I'd taken next week off instead as I've got barely anything I'd planned done. So we are now waiting for our third engineer who is due between noon and six this evening.

After engineer number two left I lay on the settee absolutely shattered from my evening of rushing up and down stairs to show him where everything was. Peter had to go out and couldn't cancel so it was left up to me to do the honours and I was passed out in front of the TV when he finally arrived home. I felt exhausted so collapsed into bed and was soon fast asleep, until the phone rang. Looking at the clock it said nine minutes past one and the caller display showed 'withheld number', wide awake now I answered it with my heart racing hardly able to believe my luck.

' Allo, is Brian there, I wanna speak to Brian.'

The caller was extremely drunk and very insistent until I vented my disappointment and frustration at him. I think he must have got the message because after that the phone was silent and I had a little cry before falling back into a fitful sleep.

Before being put on the transplant list we would turn our house phone off and just have our mobiles on at night as very few people have our mobile numbers and we were always getting crank calls on the house phone. Now of course we have to leave everything on just in case. I suppose I must expect the odd crank or mis-dialled number but when you are shocked out of sleep, and you know the middle of the night is the most likely time to get 'the call', it is so disappointing when it turns out to be a drunk.

In the news an Australian Billionaire is going to build a replica Titanic and is calling it Titanic 2. The ship will be ready in 2016 and it's maiden voyage will take the same route as the ill fated first Titanic. The new ship will have features the original didn't have, such as air conditioning, radar and enough life boats for everyone on board. Apparently 40,000 people have already registered interest in buying tickets for the first trip. Call me superstitious but I'd give it a few trips before I even though of venturing onto the deck. I would, however, love to go and look at it.......from the safety of the harbour wall.

Also in the news another form of travel and another tragedy. This time it's a balloon trip over Luxor in Egypt. What always gets me is that these things seem to gain importance by how many Britons have died. The newsreader I was watching yesterday afternoon almost bounced in her seat with excitement when she announced that news just in had confirmed three people from Britain had been killed but then adopted a sneer as she told us that the third person was just a 'British Resident' and not a 'British National', as if not being a National somehow makes that death less important. It is awful that anyone died on what was supposed to be a pleasure trip and I wish the UK media would stop grading people by their nationality. Sorry but this really does make me angry.

Well, with a bit of luck our third heating engineer will be here in just over thiry minutes so I'd better start emptying out the airing cupboard, again, and get the kettle ready.

Tuesday, 26 February 2013

Come On Baby Light My Fire

It would seem that someone has unsuccessfully tried to hack this blog account. As a result some comments have been deleted on various posts, I am sorry if one of them was yours. I don't think they got as far as changing any of my blogs but if you see something that you think might not come from me please let me know. However rest assured that everything is back to normal now and I've increased my security settings to ensure this doesn't happen again.

So back to yesterday.

It was a very successful trip out and I ate a baked potato for lunch piled high with cheese and butter, I thought there was little chance I'd find any horse in that. Peter bravely went for a chicken pie and declared it delicious. Brave, I thought, brave but foolish but he doesn't seem to have suffered any ill effects.

Last night was an absolute nightmare. I can't remember ever having to wear thermal underwear indoors but I was reduced to it yesterday evening. Peter got an old fan heater down from the loft to try and help out but it was noisy and ineffective and just seemed to blow the cold air around. My breathe actually fogged when I exhaled, that's how cold it was. We ended up going to bed early as it was warmer under the duvet than anywhere else in the house. Unfortunately this did not mean extra sleep, in fact I had a really bad night and I can only think it was because I was so cold.

This morning the heating engineer arrived just past nine and spent a good hour with his head in the airing cupboard muttering. The conclusion was that the pump had gone, something Peter had already guessed himself, and set about changing it. There was a small hiccup when he realised he did not have a vital clip and disappeared for half and hour but it looks as though we will have heating very shortly, hurray!

In the news yet another sex scandal, this time involving the Catholic church and effectively removing any chance of the next Pope being British. Even better for the media the Cardinal involved was friends with Jimmy Savile, the press must think all their birthdays have come at once. Now if they can only like the Lib Dem peer to Savile they will be in seventh heaven.

Also in the news is the re-trial of Vicky Pryce. Vicky is the ex-wife of disgraced MP Chris Hulme. Several years ago when they were still together Vicky agreed to take the blame for a traffic offence committed by her then husband Chris. Her first trial collapsed when the jury failed miserably to understand what was going on or what they were supposed to do. It now emerges that the letter telling them they were selected for jury service was sent out in eight languages besides English. Now I'm all for equality but if you are expected to sit on a jury you should at least have good enough English to know what is going on. Goodness knows how much this farce has cost so far, or how much it will continue to cost. Maybe it is time that we do what other countries do and insist that if you wish to live in England you speak English.

Well time to make my British Gas man another cup of tea. hopefully tomorrow I won't be typing my blog in gloves.

Monday, 25 February 2013

Baby It's Cold Inside

We have a minor crisis on our hands at the moment. The heating has broken down.

We first noticed something a bit awry on Friday (why do these things always happen on a Friday) when some of the radiators were cold while others were hot. Peter reasoned an airlock and spent the best part of the weekend bleeding the system etc. He did have a result of sorts, now all the radiators downstairs are cold and all the ones upstairs are tepid. He gave in this morning and phoned British Gas. Fortunately because of my disabled status, no I don't know how they knew that, I am a priority and a man will be around tomorrow. Not that much of a priority then. So it is thick jumpers, duvets on the settee and disgruntled cats. Strangely the water system is fine and I was able to have a piping hot shower this morning.

Deciding that it is probably going to be warmer in Tesco's we've decided to spend this afternoon out and about getting in our weekly shop and having a rare lunch out. Better than shivering in front out Bargain Hunt and having to stand in a freezing kitchen to prepare it. So far the cold hasn't had much effect on my breathing but I fear it won't be long. I'm already puffing much more when going upstairs and getting changed fairly takes my breath away.

Andrew was quite excited going back to University last night. He finds out about his next placement, which takes place in three weeks time, and there is a good chance it will be around here. Apparently our local ambulance service has become a training service and with so few places in London it is hoped that the new area will be able to ease the pressure. He would love it as it means he can stay at home for the duration. I would love it as I could make sure he ate properly, something he handled quite badly on his last placement, arriving back late after a twelve hour shift meant all he wanted to do was fall into bed. So we all wait eagerly for the news.

In the news you can take your pick over the continuing saga of horse meat, now apparently been found in IKEA meatballs (frankly if you chose to eat IKEA meatballs then you deserve what you get) and the latest political sex scandal. This time it is the Lib Dems that are in the lime light for all the wrong reasons. It has also been discovered that porn and dating sights are the most accessed websites in Whitehall. What this says about our politicians and their lackeys I'll leave to you to decide but it may go someway to explaining why we are in the mess we are in.

As for the horse meat well obviously this has been going on for years and the chances are if you've bought a ready meal, had a burger or had a meal in a school or hospital you've eaten horse. It must be remembered that there are no health risks involved with eating horse, other countries do it all the time without any ill effect. The problem is that we didn't know and were not given a choice. There are two ways you can express your disgust at the way cynical food companies have got away with it for so long. Go vegetarian, not a bad option, veggie food is delicious and isn't just salads. Or you can start buying your meat from a trusted source. Your local farm shop or butcher would be a good start and they will prepare the meat for you too. Personally I am hopeful that this might be the start of a resurgence in local butchers shops, saving money, jobs and communities. Hopefully fishmongers, greengrocers and bakers will follow and we will start to see our high streets emerge again. Now if only we can stop local councils from charging an arm and a leg to access these shops things will be perfect.

And with that thought in mind, I'm off out to warm up and whatever I end up eating it won't be burgers, sausages or anything else I can't identify.

Sunday, 24 February 2013

Organ's For Sale!

Here's a question for you, how desperate would you be before you considered buying an organ for transplant?

I only ask because I am currently reading a book on the subject and it has really got me thinking. The book is called Dead Tomorrow and is by Peter James. The way it is written makes me think he must have someone close who has gone through organ transplant as the emotions he portrays are bang on.

The main story is that of a mother of a fifteen year old girl for whom time is running out but there are three other stories intertwined. One is about a legitimate organ donor and his family. One is about people traffickers, farming street kids for organs, and the last is of a policeman hot on the trail of these people. It is difficult to get into at first as the story leaps around a bit at the beginning and some parts are deeply disturbing but once hook it is extremely thought provoking.

And so I had to ask myself the question, would I, under any circumstances, buy an organ? Well of course for me the answer is no, never, but I haven't been waiting long. Will I still feel the same two or three years down the track, always supposing I make it that far? How would I feel, desperately ill with only weeks or even days to live? I'm pretty sure the answer would still be no. Accepting an organ from someone who has died naturally or in an accident is bad enough. I know I will feel terribly guilty and will always wonder whether my praying for an organ was in anyway instrumental in their death. I feel guilty now as I catch myself sometime wishing that tonight will be the night. Stupid of course, how on earth can me wishing for a new life have any influence on someone dying miles away? And if I'm torturing myself with guilt in normal circumstances how would I feel knowing someone had been murdered just because they happened to be my tissue type? The short answer of course is I wouldn't, I would never be able to enjoy the 'gift' of life knowing the it wasn't a gift, it had been stolen.

Wow, a far too heavy subject for a Sunday don't you think?

Yesterday was brilliant! I watched Wales win sitting next to Laurence while Andrew was busy essay writing and Peter was reading. Then the cake turned out to be magnificent, I am really getting the hang of this baking lark and will be trying out bread sometime this week. Did I tell you I had the week off? I did? Oh, OK I won't mention it again then. We topped the day off with Die Hard 2, you can't beat a bit of Bruce Willis on a Saturday.

Today is going to be slob day and, apart from making lunch, I'm going to spend the majority on the settee watching films. I quite fancy some Lethal Weapon, maybe I should be worried, I don't know where this sudden taste for violence has come from.

In the news it's the Oscars.

I have say I avoid all award ceremonies like the plague, especially the Oscars. I watched it once and that was enough. It was a sickening display of back, patting and rubbish spouting and it could give the Eurovision Song Contest a run for it's money when it comes to political voting. What annoys me most about these sort of things is that I never agree with the result. That normally wouldn't be a problem but then some jumped up critic tries to make me feel stupid and 'out of touch' because of my choices. I even read an article once where the headline was something like 'if you don't like this movie you must be a moron'. I didn't, I'll leave it up to you to judge whether I'm a moron or not. I can't even remember which film it was talking about.

Talking of films I caught part of a Carry On film yesterday while waiting for the rugby to come on. I think it was Carry On Up The Jungle and it made me giggle like a school kid. Terribly un PC, it even had a white man blacked up, but I loved it. There was no violence, no sex and not one swear word and yet it was engaging and funny, they don't make them like that any more, unfortunately.

Well time for a cuppa and a peruse of the papers.

Saturday, 23 February 2013

If I Knew You Were Coming I'd Have Baked a Cake

Well fortunately I do and I am.

I am looking forward to what promises to be a good day. Wales are playing Italy, Laurence is coming for tea and I'm making a cake. I'm using the recipe I had my first success with so I'm fairly confident it will turn out OK and I've bought whipped cream and strawberry jam for the filling so with a bit of luck it will be really yummy.

I had a really good night's sleep last night and woke naturally around seven, obviously I am beginning to relax into my holiday and with the good news I had yesterday I'm feeling really good about things at the moment. Of course we all know what would make life perfect but it looks like I'm going to have to wait a little longer for that.

I have now set up my new face book page so my friends and family can be updated when the big day arrives. I haven't invited everyone and there is a reason for this. Some I plainly do not trust, they have been removed from my FB friends anyway so this is not a problem, and others will be updated by other means anyway. Arrangements have already been put in place for my work colleagues to be kept informed for instance. And I'm pretty sure news will travel anyway, it usually does.

I started today off with a long soak in the bath followed by a hot chocolate to keep the warm glow going and help keep the weight on. To be honest I don't think I'm going to have any problems while it is still so cold as I find I always eat more when the temperature drops. The problem is going to come in the summer because the hotter it gets the less I eat and if it is very hot I don't eat at all. Still we will tackle that when it comes and you never know I might not need to worry by then. Talking of weather it is snowing again, yes it is pretty and the first fall is very exciting but it's March next week and we need to see some sun and some warmth.

With the realisation that spring is on the doorstep I am itching to get out and start putting the garden to rights but one breath outside and I start gasping. It may be dry but it is so cold I wouldn't even attempt to do anything. This is what I'm finding really frustrating when it is dry it is too cold and when it warms up it is raining. I just can't win!

In the news today a picture of Cheryl Cole/Tweedy/Whatever showing off the most hideous tattoo I've ever seen. I've never liked Cheryl, I find her false and unpleasant and I hate big tattoos on women, so I suppose you could say I was biased from the start. Small, delicate and discrete tattoos can be very attractive, and tattoos always look good on men, no idea why they just do. Cheryl's are two enormous roses on her back and they look like wallpaper. Not attractive, just cheap and nasty. Just goes to show money can't buy taste.

Unable to get near the garden I'm having a quick run round with a duster and mop, ably assisted by Andrew. Then I'll get down to baking so I can give my full attention this afternoon to the rugby. And with that said I'd better go and get on with it or there won't even be lunch, let alone cake.

Friday, 22 February 2013

Two Months And Counting

Yes it is two months today that I was put on the transplant list at Papworth and hasn't time flown! It all still seems very new and, although I no longer jump quite so high when the phone goes at an odd hour, I still get my heart rate going.

Talking of which I had my regular MOT at the Royal Brompton this morning.

I had all the usual tests including ECHO and my consultant was delighted with the result. My heart continues to improve to the point that some of the readings today were actually normal. My pressures are still quite high but my right side continues to shrink, which I am told is an excellent sign that the heart is slowly repairing itself. He then ruined it a bit buy saying, 'your heart is in really good shape, for someone with your condition'. Oh well, I suppose being in 'good shape' for my 'condition' is better than being in poor shape in any condition. However he did say that my heart is now so good it should withstand a lung transplant with little problem, so that is reassuring to hear.

While I was there I was asked by Lisa, one of the specialist nurses, if I would speak to a lady whom they were considering putting on a Flolan pump. She was very reluctant and to be honest I think seeing what is involved may have done more harm than good as she more or less said no flat out. Having said all that I could tell just by looking at her that she was extremely image conscious so having a machine attached was just unthinkable to her. I'm sure she will come around in time and if her condition worsens any further. I think with such a big step you have to get to a point when the cure actually does look like the better option. I know if the pump had been offered to me while I could still get around and keep working I would have said a big fat 'no' too.

I have also put on a little more weight. I am now 51 kilos or just around 7 stone 13lbs so not far off my target weight. I had to ring Papworth with the results of my tests and for my monthly report and they were absolutely delighted, I'm told this will make a big difference to my recovery. I was told very sternly, to make sure it stayed on.

Since the big Organ Donation drive, just over a week ago now, 147,000 people have signed up, that is a massive number and I can't even begin to express my gratitude. On the other hand since I went onto the list 186 people have died waiting. That's three people a day. Lets hope that that figure comes down to two a day or just one a day or please, please God, none.

Well time to unwind and grab a nice sweet cuppa and have a catch up with Andrew, who has returned again this weekend because the heating in his rooms is playing up and 'it's bloody freezing'. Kids, just when you think you've got rid of them they keep coming back. Would I have it any other way? No!

Wednesday, 20 February 2013

A Quick Catch Up

There is nothing quite like a good gossip over tea and chocolates and that's how I spent Sunday afternoon. I had such fun and enjoyed the catch up with my best friend so much it was hard to drag myself away. However the need for a drug change and sleep meant I was on my way home sooner than I wanted to be. Never mind we have pencilled in a future date when we are both free so we can do it all again then.

The week on the whole hasn't been too bad over all.

I'm feeling pretty perky which is a nice change and great timing as I'm off to the Brompton on Friday for my regular MOT. And work hasn't been all that strenuous as I begin to settle into the new shifts and get used to the new faces.

This morning, however, was nearly a disaster.

I woke naturally at ten to six and turned my alarm off so I could just doze for ten minutes before getting up. I bet you can guess what is coming next,oh yes you can. My alarm clicks even when turned off so I was pretty confident I'd know when my ten minutes were up. No such luck and when I next looked at the clock it was half past six. I must have had the quickest shower in history and gulped down my breakfast during breaks in putting my make up on. I have no idea how I did it but I arrived at work five minutes earlier than usual.

I am really pleased because finally the solution to a problem I've been mulling over for weeks presented itself yesterday and I can't thank Stacie enough for thinking of it.

I have been trying to think of a way of keeping everyone informed of progress when I finally get the call. I didn't want Peter to be on the phone all the time and of course if there are complications I don't want him bothered by constant questions. Stacie came up with the brilliant idea of setting up a new facebook page to be used as a status update come the great day. So I will be adding this little task to my 'to do' list for next week and will get to it. Expect an invite soon.

Well better go and get something to eat. Next blog may be Friday, if I get back from the Brompton in time but is more likely to be Saturday.

Did I tell you I was on holiday next week, so excited. I'm not going anywhere but it will be nice to be off work without being ill.

Sunday, 17 February 2013

Having a Bit of a Grump

I am in a bit of a grump this morning.

Why? Well to be honest it is because my facebook feed is getting continually clogged up by the new chain post. This post is regarding a woman who supposedly drowned in a sewage drain and if the post isn't passed on at least a trillion times the same fate will occur to anyone who reads it. What a load of total poo that is. Even more alarming is that people whom I previously thought of as intelligent and rational are not only falling for it but are then passing it on to me! It is not true, it is a hoax, you have more chance of winning the lottery than dying because you haven't sent this on so please stop passing it around and just delete it.

My cake making went really well yesterday though I don't like the end result. Yes the cake emerged light and fluffy and with it's filling and icing looks gorgeous but it just doesn't taste very nice. The boys love it but to me it tastes a bit bitter. Oh well, at least it will be eaten.

I am getting a bit excited as in four days time I am on holiday.

I have a lot of leave left over this year for one reason or another, mostly because a leave embargo was enforced during the Olympics, so I decided to book a week off and relax a little. I haven't anything planned and will play things by ear according to the weather. I will be honing my baking skills however and yes, I'm even going to try a steak and ale pie. The stress of the last six weeks or so have caught up with me a bit and I think I need a little bit of me time. I've only booked a week because I'll get bored if it is any longer and I'm stuck in the house because Peter is working or it's raining. A week is just long enough to recharge the batteries.

Andrew is home and not feeling at his best.

Not only does he have a cold, yes I know and I am on germ alert, but his stomach is playing him up again. Andrew has an intolerance to whey. It is OK in small doses but if he eats or drinks things with a high whey content he suffers the consequences. So what did genius do? He bought some protein powder and drank it before reading the side and realising it was practically all whey. Hopefully he's learned his lesson now but somehow I doubt it as when questioned he said he 'just didn't think'.

This afternoon I am off to spend a lovely couple of hours with my best friend Diana. We meet up once a month so catch up on gossip and get progress reports on our children. I'm really looking forward to it and hopefully the weather will remain sunny so I can have a lovely drive in country as part of the treat.

I caught a brief glimpse of 'Let's Dance For Comic Relief' and instantly though 'why'?

Don't get me wrong, Comic Relief does some wonderful things but, and I may offend here, I prefer Children In Need because it helps children in the UK. As a country we give billions in aid every year, money that comes from our taxes. Considering the economic downturn and the increasing number of our own people who cannot afford to eat, keep a roof over their heads or afford decent clothing wouldn't it make sense to sort out our own back yard before messing with someone else's? And then on top off all the aid we give involuntarily we are hounded for months to dip into our ever more shallow pockets and give even more. Why? Why should we do this?

They say that Comic Relief also helps children in the UK and yet all the small films they show are of African children so, and I may be wrong, I don't think it is much. I give to charity and I spend money in charity shops but I always chose to give to charities that will help our own. Selfish? Well I suppose it is in a way but I firmly believe that only when we can say, hand on heart, there is not one hungry, frightened, desperately ill child in the whole of the UK, can we help other countries. Until then I'm afraid Comic Relief will get none of my money, I'm sending my fiver to the NSPCC.

Right off to the kitchen, bangers and mash for lunch. The sausages from my local butcher, I'm not taking any chances.

Saturday, 16 February 2013

Dammed If You Do And Dammed If You Don't.

This is going to be a bit of rant.

Yesterday I was flicking though some magazines while Peter was busy deciding which bread to buy. Long gone is the 'throw it in the trolley and hope for the best' method of shopping he used to adopt. The last week or so has seen every ingredient read and analysed before the produce ever hits the basket. This is not only annoying, because we never buy any ready meals, but time consuming. Anyway back to the main rant.

I was flicking through some magazines when I came across a section called something like 'celebrity grooming gaffs'. In this article there were several picture of, what looked to me, perfectly turned out women doing everyday things like walking down the street. Each picture contained a circle within which was a magnified piece of their anatomy. One, may heaven forgive her, had chipped nail polish on her big toe. Another had a spot on her chin and the picture that astounded me most showed a woman with three, and I counted, stray hairs on the bridge of her nose. The article went on to roundly lambaste these poor women for being slovenly and wondered how they dared show their faces in such a state.

In the paper this morning there were two more articles, one featured two young women in their twenties who both had surgery on their breasts and bottoms so that they would look like Jennifer Lopez. The results I have to say make them look like cartoon copies of their heroine with bums so overinflated I wonder whether they can ever sit on a chair with their backs flush against the back rest. Not surprisingly these two go on to moan about how they wish they'd never had it done because they don't like the attention they get. So why did they do it? Well partly because of mum's insistence and partly just because they could, even though they had to go to Columbia to get the work done as at fifteen they were to young to get it done in the UK.

The other story featured failing actress Martine McCutcheon who has just been declared bankrupt and celebrated the event by having £500 worth of extensions put in.

So why have these stories made me so cross?

Well, take your ideal woman as prescribed by the cult of celebrity. This woman should be completely hairless except on her head where the hair should be thick and style to within an inch of it's life at all times, regardless of weather conditions of what activity the owner is indulging in. The idea woman should weigh no more than five stone but have gravity defying boobs the size of basketballs and a backside you could rest a cup and saucer on. She must be perfectly made up in this seasons colours and yet also look as though she isn't wearing make up at all. And last but not least she must be dressed in the hottest trends and if at all possible she must not be seen in the same outfit twice, the worst possible crime is wearing an item that is 'out of season'. Fail to follow any of these dictates and you are immediately classed a failure as size twelve Martine found to her cost. Her bum, by the way, is naturally rounded so obviously not good enough.

Now let's look at your average woman. This woman will have hair everywhere, she will remove it only from the bits she will be leaving uncovered. On very, very special occasions she might be tempted to remove more if the pain, embarrassment or cost doesn't put her off first.. The days when she has less than three hairs on the bridge of her nose can be counted on the fingers of one hand as she doesn't have time to examine herself for these small imperfections every day of the week. Her hair will usually be scraped back in a bun or pony tail or on seriously bad hair days covered with a hat. Her hair is only styled on special occasions and is promptly ruined by a puff of wind the minute she steps out of the salon. Makeup consists of a quick coating of mascara and a slick of lipstick as she runs out of the door. Her nail polish is permanently chipped because she has to do her own housework. Her wardrobe is made up of things that suit her and old favourites, as she doesn't have the money to spend on expensive mistakes that she'll only get one wear out of.

The difference between the ideal and reality is now so wide that young girls feel permanently inadequate and their confidence is lower than at any other time in history. More and more are killing themselves in their quest for this perfection, while others are bankrupting themselves and still keep spending as they try to live up to an ideal that does not exist in nature and never has.

When I was a teenager, all of four decades ago, which isn't that long, your brain and your character were the most important thing. Yes there was still pressure to look nice and to be fashionable but our ambitions were to be educated, go onto university or get a good job and make something of ourselves using nothing more than our brains and ambition. They say we women had it tough back then, still fighting to have equal pay with men, still fighting to be allowed to do the same jobs as men but I think it is so much harder today. At least our goals were achievable, all they required was effort.

Today my local police force is bracing itself for trouble. Our local football club Luton Town is playing host to Millwall and previous encounters have not ended well. The last time the teams played at Luton the town center was wrecked and as a result Luton banned away supporters for some time afterwards.

I'm not a football fan but I have lots of friends who are and regularly attend the matches. Some have wisely decided to stay at home for this one while others have decided to chance it, sighting the fact that things have changed since 1985. They certainly have, our society has got more violent for a start and more people think nothing of carrying knives around with them. Please stay safe everyone and lets have a good, safe game.

There is no rugby this weekend and so I will have some time to bake instead but first lunch, a pasta I think and then the ironing, the fun never stops.

Friday, 15 February 2013

The Higher They Are.......

Such great news today, 120,000 people have signed up to the organ donor list since the start of the campaign on Monday, what a fabulous success it has been. I send a great big thank you to all who have signed up so far and also to those whose work made it happen. Well done everyone.

It was Warfarin clinic today and although I arrived at more or less the same time as last visit, hoping for a small queue again, the place was packed out. I grabbed one of the magazines that I've read a hundred times before and settled down for a long wait.

About half an hour in and the doors to the clinic crashed open and who should arrive scowling, loud and unpleasant but the American woman I mentioned a few weeks ago. At the time I last wrote about her I'd commented that I'd hoped she was on a flying visit, sadly it seems it wasn't to be. For those that don't remember that particular blog a quick re-cap. This woman arrived at the clinic in her double width wheelchair and caused chaos and was extremely unpleasant to all and sundry. Her wheelchair was plonked in the corridor preventing everyone from getting to or from the curtained area where they do the tests and she took offense when asked to move. With this in mind I lowered my paper in anticipation of round two of hostilities between her and the staff. To my utter surprise her carer parked her carefully out of the way and when she was called she GOT OUT OF THE CHAIR AND WALKED TO THE BOOTH. I had to do a double take as last time, although the staff insisted she could walk the short distance, she was adamant that she could not. Clearly something had been said between the last time I saw her and today's visit. Or maybe she just decided that her New Year's resolution was to stop being such an awkward cow.

I also witnessed a second equally surprising incident but this one made my blood boil. There was a new  nurse in clinic today and I didn't really take notice until she called the name of a particularly frail old lady sitting two rows in front of me. Although this nurse was less than two feet away from this old lady she just stood and watched as the old girl gamely tried to get up from her seat. After a few moments of struggle it became clear that she wasn't going to make it without help but this nurse did not move an inch. Instead several other patients went to this old lady's rescue, one actually had to barge the nurse out of the way to get to her and still the nurse did nothing. A dark murmur went around the room as the nurse disappeared behind the curtain leaving the old lady trailing in her wake. No one was impressed. For me the thought that maybe her attitude was the reason she had been booted off the ward to work in clinic but maybe I'm just being a tad unkind.

The weather, for a change, is beautiful today but the wind was still biting and I took great pleasure in sauntering along the road between car and clinic and back again without having to dress up like I'm treking across the arctic. We did briefly toy with the idea of going out and having a quick whizz around the charity shops for books this afternoon but the icy breeze put us off. I'm on a weeks leave at the end of the month so we'll do it then, when hopefully things will have warmed up a bit more.

Flush with my baking success last week I went and bought some new equipment today. I bought two deep sandwich tins and a large bread tin. I am planning to try and make bread again during my week off and have a delicious walnut and brandy chocolate cake lined up to make tomorrow.

In the news the horse meat scandal rumbles on and more and more products are being removed from shops while processing plants and abattoirs are being raided throughout the UK and Europe. I can't say I'm surprised but it isn't the horse meat that worries me, it is all the other stuff they've been chucking in hoping nobody will ever notice.

The big, big news of course is the arrested of blade runner Oscar Pistorius after he killed his girlfriend by shooting her four times at close range. Although the murder would be shocking in any circumstances the horror of the situation seems to be amplified by the fact that he is disabled. I don't know why the disabled seem to instantly gain the status of sainthood but they do and so when a disabled person does something like this it always seems so much worse. There seems to be some debate as to what exactly happened at the moment and no doubt things will become clearer as the case progresses. For me I'm just sorry that a person who was such an inspiration to so many disabled people around the world has destroyed everything he stands for in one blind flash of anger.

Well it looks like our decision to stay at home was justified as a big black cloud has just rolled in and there are a few spots of rain on the window. I just have time for a nice cuppa and a chocolate doughnut before I go and collect Andrew from uni, he was parted from his bike once again by last weekend's snow. I seem to be doing more taxi duties since he moved out than I ever did when he lived here, such is life.

Wednesday, 13 February 2013

Doing Us Proud

Just a quick blog today to praise the efforts of fellow PH sufferers, and transplant buddies, Kath Graham and Stacie Pridden for their brilliant efforts to get the message about organ donation across. You were both very good and if we don't get some more donors on the list just on your efforts alone I'll eat my hat.

Yes it is ITV's awareness week as they push to increase the number of people putting their names forward to be donors.

To be honest, because of work commitments, I have mostly had to watch it on catch up but what I have seen has impressed me enormously. I was sort of expecting it to be all a bit mushy but it hasn't been like that at all so far and the programmes, interviews and news stories have all be very interesting. There is a special programme on tonight which I will be watching and I urge you all to do the same.

I am feeling better but just wish I could get rid of the ache in my back. I had to resort to pain killers this afternoon, which is never a good sign.

My spirits have been raised somewhat this week by working with fellow transplant patient John. He is coming up to his one year anniversary of his transplant and is looking really well. He is excited because passing the one year point means less hospital visits and the chance of a holiday abroad. He has taken time out to talk to me and has been nothing but encouraging, something I desperately need right now. It is lovely to see such a success and I really hope I'll be following in his footsteps very soon.

Talking of which I thought my time had come on Sunday morning when the phone rang just after nine. I was downstairs feeding the cats and I just froze. I knew that if Peter came charging down the stairs it was time, but he didn't, it wasn't so I made some toast and went back to bed to read the newspaper. This is the second weird call we've had this week, maybe the third one will be the lucky one, fingers crossed.

I have continued to lose weight, another pound fell off over the weekend and I know this is a very bad sign. Today I tried to make amends with a Toffee Crisp but then ruined it all by having a salad roll for lunch and nothing but tea for the rest of the afternoon. Obviously I must try harder.

Coming home this afternoon I drove through a mini blizzard and it is still snowing now. Pretty as it is I've had enough now. Can we please have a nice, warm early spring instead?

Well as I said, this is a quickie. A bigger blog will appear on Friday, until then keep safe and if you can watch ITV tonight at 8pm or 2200 hours whichever you prefer.

Sunday, 10 February 2013

You Gotta Roll With It

Yesterday was a day of ups and downs but I am glad to say I appear to be coming out of my doldrums at last.

The downer was receiving my new debit card, reading the expiry date of 2016 and realising that I'm likely to expire first. A strange feeling but one I have to get used to. Since going onto the transplant list, on 21st December 2012, 153 fellow transplant patients have died waiting. It is a sobering thought and one that has to be addressed. Starting tomorrow ITV launches it's Organ Donor Campaign and several of my fellow transplant patients will be taking part to emphasis why putting yourself up as a donor is so important. So look out for Kath and Stacie next week and please, sign up.

The ups were far more numerous. First and foremost I had both my babies with me as Laurence joined us for lunch and watched some of the rugby with me. I do love seeing them both together, it makes me feel as though I have my family back.

Then there was the shock and joy of Wales beating France in the rugby. I don't know what our neighbours thought as I jumped up and down, screaming with joy, before the PH kicked in and necessitated a quick suck on my oxygen.

The final triumph was in my baking. For the first time ever I baked a cake that didn't come out of the oven resembling a biscuit. This cake was light and fluffy and such a surprise I just stood there looking at it. It tasted even better than it looked and Peter remarked that he'd never known me to bake like this before. I'd asked for a book on successful baking for Christmas and was given one, no doubt in the faint hope I's stop giving everyone indigestion. Obviously it worked and I will be trying a different recipe next weekend.

This morning I was downstairs feeding the cats when the phone rang. 0930 in the morning would have been too early for anyone I know to ring, unless there had been a disaster, so I froze listening as Peter answered it. As he didn't come hurtling down the stairs with a look of panic on his face I concluded that the call wasn't for me and got on with the job in hand.

My reaction surprised me somewhat because up to now I've jumped every time the phone rang at an unusual time. My rather more relaxed approach is obviously better for the nerves and the blood pressure but I felt a note of sadness that I no longer 'expect' it to be Papworth. It's not that I've given up hope at all, I think it is just that I've come back down to earth and realised that the chances of getting a call is a lot less likely than I first hoped. Maybe this is a good thing as the disappointment lessens with time and you just roll with the punches.

I'm back to work tomorrow and once again not looking forward to it.

I don't know why I've become so negative towards my job recently. I used to love what I did and actually looked forward to the day but the atmosphere has changed and we are no longer the close knit little group we used to be. I am now working with a lot of people whom I don't know and who do not know me. I get stared at when I come into the room with my oxygen and, I hate to say this, but I see pity in their eyes. The people I used to work with never pitied me, they just accepted things because they walked the path with me, these new people have just walked into the situation and really don't know what to make of me.

I see curious looks and a few brave souls have asked about my condition. I don't mind this I rather they ask openly than gossip behind my back so I've answered their questions openly and honestly. What really scares me most though is that I'm working with new supervisors and I wonder how much they have been told. Do they know that I can take extra breaks if I'm unwell, not that I ever do? Do they know I have to be escorted out of the building as soon as the fire alarm goes off and not stay at my post until the last minute like everyone else? I know all this sound stupid but it makes me uncomfortable and, I have to say it, unsafe.

I'm sure things will settle down and soon everyone will know all they need to but I fear I'm in for an uncomfortable few months.

In the news the horrific story of a baby having it's fingers bitten off by a fox.

Naturally there are calls to have the fox shot and the hunting lobby are citing this as a reason to make fox hunting legal again. Well although I can understand the sentiment there is a world of difference between the urban fox and the country fox.

The urban fox has lost it's fear of humans and has grown in numbers due to the rich pickings on our city streets. Who can blame it for wanting an easy life and we encourage this by our behaviour. We litter out streets with half eaten food, mostly chips, burgers and kebabs, rather than put our rubbish into secure bins. We see these animals as cute and encourage them into our gardens by feeding them. And in extreme cases make pets out of them.

The country fox has a much harder life. It is terrified of humans, and with good reason, and has no chance of getting fat and lazy. The country fox has to live on it's wits, hunting is how it gets it's food, and then only if it is lucky. They are persecuted by farmers or anyone who keeps live stock.

So by comparison the urban fox has a much more comfortable life than it's country bumpkin cousin. The urban fox will get a better death too, not the terror of hearing dogs coming after you, or the exhaustion of running miles to escape. The urban fox will be dispatched with a quick bullet, it will not feel the pain or terror as it is ripped apart, taking minutes to die. Urban foxes need to be controlled but what has happened should not mean the the blameless country fox should also pay in the the most hideous way imaginable. 

Saturday, 9 February 2013

Taking On The Big Boys

Well what a surprise! My trip to the doctor's resulted in being told I did not have a chest infection, I don't even have a wheeze so I can only conclude it is down to my PH. I'm sure the Brompton will sort me out, they always do but it is depressing to find I am going downhill again.

Talking about going downhill I've also lost weight. It is only a pound and a half but it is still a loss.

Yesterday's trip to our local Tesco was more exciting than usual.

Diving into the car park in front of us with all light blazing was a police car. As we parked up in one of the disabled bays two officers dashed into the store.

What appeared to be an elderly gent was sitting on a bench inside the store with his back towards us surrounded by security, two PCSO's and two PC's. My first thought was that he'd been assaulted or robbed so imagine my astonishment when they slapped handcuffs on him and started walking him to the police car. We met in the doorway and as he went past he was protesting his innocence rather vigorously and seemed rather the worse for wear.

Peter knows someone who works at the store and fortunately not only was she on duty but also part of the melee. She told us that this 'gentleman' had been wondering around the store having a bit of a picnic. He there decided to walk out without presenting the wrappers of the items he'd eaten for payment. He was challenged and things turned nasty, the staff were busy scouring the store for empty wrappers as when he was stopped he didn't have any on him.

After completing our shopping and failing to spot any discarded wrappings we returned home where Andrew cooked a Bulgarian treat for us. It is called Banitsa and is made up of eggs, feta cheese and filo pastry and although they looked less than appetising they tasted absolutely delicious.

Laurence is coming for lunch today so I'm cooking one of his favourites, a creamy, spicy pasta made up of fresh tomatoes, cream, chilli and salami. It is quite hot but we love it.

I had another shout at my drug delivery company yesterday afternoon.

Last month's delivery they only sent half the quantity that I'd ordered of dressing packs and substituted large gloves instead of my usual medium. I rang and complained and they promised to rectify the gloves for the next delivery and they sent out the remaining dressing packs by recorded delivery. Yesterday my order arrived minus any dressing packs and with large gloves. I can use large gloves but they have a tendency to roll back on themselves and get in the way when doing the more intricate parts of my drug change so they are not the easiest things to wear.

Every month I have to ring up and complain about something they've got wrong so I'd just about got to the end of my tether with them. Let's be real here, this is a company suppling specialised drugs and equipment to seriously ill patients so wouldn't you expect them to get it right? Of course you would, patients shouldn't be put at risk by having the wrong equipment supplied or not delivered at all. So I lost my temper and shouted at the poor woman on the phone. I felt terrible afterwards as I knew exactly how she would be feeling, but after nearly two years of constant cock ups I felt shock treatment was the only way forward. Anyway my missing items and correctly sized gloves arrived this morning. Will next month's delivery be without fault? We can only wait and see but I'm not holding my breathe.

Creamy Tomato Pasta with a Kick (serves 4)

750k of fresh, very ripe tomatoes, skinned de-seeded and chopped.
500g pasta, preferably fusili 

300g of spicy Italian sausage, or Chorizo will do, thinly sliced (this can be left out if you want the veggie version)

Small pot of single cream, approx 300ml
dried crushed chillies
Sprig of fresh rosemary or 1 teaspoon dried. (I recommend the fresh for a better flavour)

In a deep, thick based frying pan melt a small knob of butter and fry the sausage for 3 -5 mins on a high heat until browned. Use a paper towel to remove any excess oil that this might produce (if you don't the cream will curdle). Put water on to boil. Remove sausages from heat while you remove Rosemary leaves from stalk and finely chop them, mix in with the chopped tomatoes and add to frying pan and return to medium heat. Cook until tomatoes start to break down and become mushy, about 6 - 7 mins. Add pasta to boiling water and cook for ten minutes. Turn heat under frying pan to low, add cream, about half to one teaspoon of dried chillies (depending on how hot you want it) and two tablespoons of grated Parmesan, stir well. Cook until pasta is ready and cream has thickened slightly. Drain pasta and returned to saucepan. Pour sauce over pasta and mix well. Serve with extra Parmesan and salad. Garlic bread is not recommended to accompany this dish as the flavour will clash.

Well now I've written it down I'd better go and cook it. I've had to send Andrew out because I forgot a vital ingredient, yep I forgot the cream. Dumbo.

Friday, 8 February 2013

Wearing The Face That She Keeps In A Jar By The Door

Oh for goodness sake! Why can't I just be free of infection, just for a couple of weeks.

I'm back at my GP's today as I am on my last antibiotic tablet and my chest still feels as though it is full of yuk. The worrying thing is I'm not coughing so I'm wondering whether I've actually got the old pluresy problem back again. I'll soon find out my appointment is at eleven.

My PH center had a bit of a panic when I told them what had been going on and wanted me to drop everything and go straight in 'for tests', staying overnight. Well as you can imagine that was rebuffed immediately. I know when I'm in serious trouble and something has gone wrong so didn't feel an emergency admission was necessary. I do think my Flolan needs adjusting to take in my new weight but everything else is OK. We have agreed to stick with the clinic appointment in two weeks but I've promised to get in touch if things get any worse. An uneasy compromise but there was no way I was going to spend any time in hospital unless I really needed it.

I was asked yet again yesterday whether I had a date for my operation.

To be honest I'm getting a bit sick of having to explain things. Do people really think they have organs stored away in fridges? Apparently so. Hopefully the organ donor campaign starting on Monday will educate a few people and I won't get asked anymore.

I was also asked how I did it, how do I come into work each day with a smile on my face and remain cheerful no matter what life throws at me. The question ended with 'because I couldn't do it.'

I don't think any of us know how we will react to suddenly being really ill. It is not a scenario that we can easily imagine, who wants to? If anyone had told me ten or even five years ago that I'd be relying on a machine to keep me alive and desperate for transplant I'd probably have laughed in their face because it seemed so ridiculous. Either that or I'd have made some glib remark about killing myself before then. So how have I done it? Well the easy answer is because I have no choice in the matter. I can't wake up one morning and say 'well I've had enough now, from today I'm going to be well'. Believe me I wish I could. The choices are stark. Stay at home and wallow in my misfortune or get on with living as full a life as possible and when the going gets really tough slap on an even bigger smile. Sometimes I feel like the biggest fraud ever because my outward appearance bares no resemblance to how I am feeling inside.

Recently the mask has slipped a bit and, despite protesting that I didn't need counselling, I've found it does actually help. You feel wary and a bit silly at first but getting everything out and actually having someone tell you that all the feelings of anger and fear are normal is very reassuring. My counsellor actually told me that she'd be more worried about me if I didn't go off the rails occasionally.

In the news, the horse meat scandal.

Fortunately finding horse meat in your burgers or ready meals isn't dangerous but it brings to the fore the unpleasant thought that, unless we've made these things ourselves, we don't really know what we are eating. I've long thought that relying on what the manufacturers put on the box is just what they want us to know about. My suspicions were raised when one day I read the ingredients on a ready meal while it was in the microwave and found thy only added up to 97% of what I was eating. I still wonder what was in the outstanding 3%. Since then I've relied less on shop bought stuff and made things myself. I much prefer to make a massive lasagna and freeze half into individual portions than by ready made. Where I can I make up my own sauce too.

There are no health reasons to worry about eating horse meat, I'm sure all the proper safety precautions were taken with horse as for beef, lamb or poultry. What worries me is the breaking of trust. If horse meat gets through what else is being put into our food that we don't know about. Also by not telling me what is in a product I am being denied a choice. I might well still choose to eat a burger with a small proportion of horse in it but I don't want to do so in ignorance, I want the choice to be mine.

Well my student paramedic is home and demanding food so I'd better go.

Wednesday, 6 February 2013

Now is the Winter of our Discontent

It has been a pretty dire few days.

Thanks to all who continue to offer support and advice, you are all correct when you say it does help to know you are not alone.

Yesterday I decided to stop wallowing in misery at home and take myself off to wallow at work instead. And just as I'd hoped my work colleagues soon had the smile back on my face. It did help that the antibiotics are doing their job and I am feeling physically much better. There is another reason I'm glad I went in as I had a meeting with Welfare on Tuesday morning.

These little counselling sessions really help and this one arrived at just the right time. I was able to discuss my fears and frustrations without being judged and I was given some very helpful advice on how to deal with certain things that were getting me down. As a result I feel in a lighter mood today. I wouldn't say exactly positive but lighter. I've booked in for a few more at weekly intervals, I think I need the extra support at the moment and as it is on offer I may as well take it, especially as the lady I see is so lovely.

It has been really cold here and we did have a snow flurry or two yesterday afternoon but now it is just cold and windy. Horrible.

I have something to look forward too this weekend, both my boys will be around the dining table this Saturday as Laurence is coming down for a visit. He has two weeks off as he is trying to use up his leave so with a bit of luck I'll see him next weekend as well.

Andrew has passed all his first term exams and seems to be really enjoying this term as there is a lot more in depth stuff to get to grips with. He is learning to read ECG's so when I go to the Brompton in two weeks I'll see if I can get a copy of mine when  I was in AF. He'll have fun interpreting that!

Mercifully my weight remains stable, nothing on but nothing off either and I think this might be a clue to my current breathing problems.

My drug is administered by weight, so the heavier you are the more you get. When I started the drug and until just after Christmas my weight was at least two kilos less, possibly three, so technically I'm getting a smaller dose that I should be. I have contacted my PH center and they say it is a possibility but they will need to check me over to make sure there isn't something else lurking before considering that. There is a reluctance to increase my dose on both sides, me because I really don't want to go through all the sickness again and them because my increased weight might well be temporary. If I lose weight again I could end up getting too much and being very ill indeed. We will discuss this in two weeks and make a decision on whether to take a chance and go with an increase or leave it for another couple of weeks and see how it goes.

Dancing On Ice Watch

I'm afraid to say I have now abandoned this so there will be no further reports.

In the news.

Well, well, well the body in the car park is probably that of Richard III after all. I say probably because we can never be 100% sure.

How thrilling. I've always had a bit of a soft spot for old Richard. Only two years on the throne and a reputation ruined by Tudors who still saw him as a threat long after he was dead and buried. Richard has fascinated me since childhood when I, along with every other child in Britain, was fed the fiction of the two princes in the tower, a rumour which was seemly supported by the discovery of two skeletons found under a staircase. However how the princes died remains an unsolved mystery and so the blame was put squarely onto Richard's shoulders without any evidence to support it above and beyond that he only got the crown because they were to young to rule.

Having been beaten in the battle of Bosworth by Henry VII the Tudors wasted no time in discrediting Richard, aided and abetted by various 'historians' and play-writes, most notably William Shakespeare, who wrote a whole play about how awful Richard was.

Another set of historians paint a different picture of the last medieval king, one that is deemed to be more accurate these days than the character assassination of the Tudor era. Richard was far from being a cripple, he was also a loving uncle and a good husband. It just goes to show, maybe we shouldn't believe everything that history tells us.

Well time for a cuppa and a chill out in front of the TV, one of the benefits of finishing at four instead of six, proper chill out time after work. Next blog Friday.

Monday, 4 February 2013

Never Give In, Never Surrender

Another day, another downer but the kind comments, e mails and FB posts I received following my blog yesterday makes me realise I'm not alone and you all have my back during the bad times. Thank you all for just being there.

As you can probably tell I'm not at work today. I did try and spent yesterday evening preparing by ironing my uniform, making up my packed lunch and checking I had change for the chocolate machine. However when the alarm went just before six this morning my mind went 'come on into the shower and then we'll assess how you are doing', while my body went 'no way, are you mad? I'm staying put'. Today the body won as try as I might I just could not get out of bed. Aside from feeling pretty miserable about yet another set back, and of course the infection itself, I'd had a really bad night. For a start I just could not get warm and ended up getting up around one to put on my dressing gown and some old rugby socks. It helped but not by much and I snuggled as close as I could to Peter for some warmth. He responded by throwing the covers off because he was over heating, sometimes you just can't win. After a fitful couple of hours I was suddenly wide awake at 03.44 precisely. I have no idea what woke my but I can say that, disappointingly, it wasn't the phone. Trying to get back to sleep after that was hopeless so I just lay there listening to the stereo purring of Tarmac and Smirnoff as they forgot their differences for once and slept soundly at my feet.

To be honest today is more about looking after my mental health rather than the physical, which does seem to have improved since Saturday. I just couldn't face dealing with other peoples problems or my little tag team today.

The trouble with an illness like PH is that everyone tends to focus on what it is doing to your body whilst forgetting completely the effect it has on your mind. Living with a terminal illness is stressful.

Everyone has stresses in their lives, we worry about our jobs, money, our kids and a million other little things that make up life. For someone with a serious illness you have all that plus all the additional stress being ill can bring. First you have to deal with being told you are dying. Then there are all the meds to get used to, the gradual but relentless changes to your lifestyle, the humiliation of having to carry machinery around with you, just to stay alive. You worry about how you will die, will it be quick or long drawn out and painful, you worry about how your family will cope without you. Then you worry about letting people down when you can't make it into work, holidays or visit to the cinema have to be cancelled at short notice. And all the time your world is shrinking around you.

Regular blog readers will know that 2012 was a particularly stressful time for me, November and December were particularly bad. Not only did I end up in Papworth on my birthday for transplant assessment but I also had a cancer scare that resulted in surgery and a wait for the all clear. Then there was the bout of flu and accompanying chest infection that rendered me bedridden for most of December. I recovered just in time to go into work on Christmas Day and then I was thrown into the busiest Christmas ever all the time jumping when the phone went and praying it was 'the call'.

2013 has started with stresses of it's own. There's the change in shift patterns at work, though admittedly it has worked out better for me than I expected and I quite like the shorter days. And then there is the stress of being 'on the list'.

When you first get put on the list you are convinced that the call will come almost before you leave hospital then as the days and weeks pass reality dawns that you could be in for a really long wait. Every time the phone rings at a time you don't expect it too, i.e. late at night or early on a weekend you jump thinking this might be it only to have a tiny piece of hope chipped away when it turns out to be another marketing call.

So is it any wonder that sometimes it all gets too much and you just want to shut out the world and wallow in your misery for a while. Someone said that I must remember that tomorrow is another day and I'll feel so much better. Yes but I could also feel so much worse.

One thing I do know is that I will get my mojo back, it could be tomorrow, it could be next week but it will come and when it does I'll get back on that horse and face down my problems because I don't give in.

Sunday, 3 February 2013

Living On Borrowed Time

I'm having a really down day so please bear with me.

Well I 'd like to start this blog by saying I feel better but unfortunately it is not the case. I felt so rough last night I dived into my emergency antibiotic supply. Fortunately I had a good night's sleep and I did wake feeling better until I started moving around. I have say my breathing is slightly better but I still feel 'under the weather'. Will I make it to work tomorrow, I genuinely do not know at this point, but if I haven't improved by this evening I think I'm going to have to give it a miss and take myself off the the doctor Monday morning.

I can't say I'm surprised I've picked something else up, there are still a lot of nasty things circulating and a lot more people to catch them off. No matter how careful I am about cleaning my desk and chair every morning or constantly washing my hands with antibac gel I can't filter the bugs out of the air I breathe. I must admit the thought of being ill again is depressing and frustrating but I have to be grateful that I'm still here, a lot of my PH friends are not anymore. And I am painfully aware that my time is fast running out.

When originally diagnosed back in 2007 my PH was so advanced, having been poo-pooed by my local hospital as Asthma, I was told my prognoses was very poor and I had two maybe three years. I made it to my prognoses and passed it with flying colours but this of course means I am now very much on borrowed time. Every illness, every small cough or serious infection shortens my life. Maybe not by much but when you are in my position every minute is precious. One day one of these infections will kill me. This is not me being melodramatic, this is a fact, that is if my heart doesn't give in under the strain of PH first. So each infection is a threat and should be taken seriously. Now those of you who have known me since diagnoses or who read my blog regularly know I've been rather cavalier about such things in the past and have berated me roundly for it. Rest assured this is not going to be the case this time. For one thing I just do not have the energy to try and brush things off anymore. I'm tired of fighting. Every day is such a struggle and I just can't do it anymore, I just can't. What is the point of being relentlessly cheerful and optimistic when all you are doing is fooling yourself that it will be OK in the end. The reality is that for thousands of people it isn't OK in the end and they die so why should I think it will be any different for me?

So it is another day in front of the TV watching complete crap and wishing I was anyone but me. Sorry if this blog has upset you but sometimes I just have to get things off my chest and tell it as it is.

Saturday, 2 February 2013

These Things Are Sent To Try Us

Yesterday turned into a bit of a drama so it is no surprise that I'm feeling a little under the weather today.

It started so well, walked into my Warfarin clinic to find only five people waiting, I was in and out in twenty minutes and heading for Tesco, where it all went spectacularly wrong.

Coming around the roundabout into the Tesco car park my car suddenly started hooting at me and the engine overheat light came on. At the same moment steam started pouring from under the bonnet so Peter pulled up at the nearest parking bay and switched off. We got out and gingerly lifted the bonnet. To our dismay the pipe leading from the water tank to the engine had split and I had dumped several pints of water and anti freeze all over the road. Deciding there was nothing we could do there and then we went off to do our shopping whilst everything cooled down.

Once shopping was done we headed back to the car armed with several bottles of Tesco everyday value water (17p for two litres) and open the bonnet again. Being the genius he is with cars Peter managed to make an emergency repair and we refilled the water tank, keeping a couple of bottles in reserve, and started her up. The repair held and we made it home stopping off to buy a new pipe on the way. Peter is busy fitting it as I'm typing this.

After a quick lunch we then headed out in his car to Milton Keynes as he needed to pick something up from the market to help with the repair and I had a couple of books to return to Waterstones after mistakingly buying two I'd already had. To save time, as Andrew was coming home for the weekend, we split up and agreed to phone each other when our tasks were completed. BIG, BIG mistake. Driving past Hotel Chocolat I saw a display of kirsch cherries in dark chocolate my absolute favourite and just couldn't go past them. Five minutes later with a pot bought I headed for our agreed meeting point and dug in while waiting for Peter to arrive.

I have to say I am an absolute pig with these little round morsels of heaven and found I'd eaten a quarter of the pot without thinking. Now I am hyper-sensitive to alcohol and to my horror I realised I was feeling rather relaxed. Thank goodness Peter arrived before I could demolish anymore other wise I could have been charged with being drunk in charge of a Travelscoot.

Arriving home we found Andrew waiting on the doorstep, he'd forgotten his key and had been loitering for about an hour. He helped us unpack and then I was left alone, in front of the TV, with the cherries. Lets just say I had a very mellow, if slightly queasy, afternoon that won't be repeated anytime soon.

This morning good old PH has reared it's ugly head and chosen to remind me why I'm on the transplant list. Even the few feet from bed to bathroom has me puffing and blowing like a steam engine and I feel totally drained. It could be the result of a busy week and a stress filled day yesterday or it could be the start of yet another infection, this is getting beyond a joke now, or it could just be one of those days. Whichever I just wish it would bugger off and leave me alone, excuse my language. These are the days I pray for the call because I don't know how many more of these 'off' days I can stand. If I'm still bad tomorrow I'll break open my antibiotic supply and book myself in with the doctor on Monday. It'll mean a day off work at least but I doubt I'll be missed, there are so many of us these days.

So it is going to be a day tied to my oxygen and flopped in front of the TV. At least I have the first of the Six Nations rugby tournament to watch so that will be good, however Wales haven't been playing well recently so I fear another disappointment will follow a stressful couple of hours.

One thing I will not be doing is watching Casualty with Andrew. Now he has some medical knowledge he ruins shows like this by pointing out all the bloopers only a medic would spot. This is fine but I wish he'd keep them to himself and let me enjoy the fantasy. Holby City showed a heart transplant recently where the patient was sitting up in bed fuly lucid and chatting away to the surgeon with only a drip in her arm only hours post surgery. I'm not stupid and I know this is not what happens but it is nice to imagine it could, even for an hour.

It has been all go for two of my fellow PH suffers and transplant buddies this week.

Stacie, link to blog is on the listing to the right of this post, has been interview by Daybreak as part of their campaign for more organ donors. I delighted she managed to put a case for us PH suffers and am so looking forward to seeing it. Well done Stacie and a great big thank you for taking time out to help all of us.

Kath, blog also in the listings on the right, is marking 500 days waiting for transplant. It is a sobering thought that during the time Kath has been waiting 1500 people have died due to lack of donors. If you do nothing else today please, please, please sign up to be an organ donor and don't forget to tell your family, as they will be the ones who have the final say.

Well I'm off to prepared for the Rugby, come on Wales, give me something to smile about this weekend, please.