Fancy A Curry?

Well the last few days have been a mixed bag to say the least.

I've barely seen Peter as he has had to work late this last few days and we are a bit like ships passing in the night. I managed a quick hello when I got in today and then he was gone. However my new shift patterns mean I am now home every weekend so we still get plenty of time together, yes there are some benefits.

The weather is still causing problems as far as my PH is concerned. I thought that once the snow had gone and milder weather took over things would ease up but now we have wind. Wind, although not as bad as snow, can make breathing quite difficult especially when it rips you oxygen cannula off your face. All I want is a nice mild wind free day with some sunshine thrown in, is that really too much to ask?

My campaign to gain weight seems to have ground to a halt and I'm having trouble putting those last few pounds on, however I haven't lost any weight so far either so that is a good sign. As part of my 'eat more' venture I've invested in some little rice pots you can buy with different flavoured sauces. Today I chose curry and all was going well until I dropped a huge forkful in my lap. Thankfully I managed to miss my crisp, white shirt but my trousers got covered and scrub as I might, with the limited cleaning equipment we have, the stain remained and not only that but I stank. I spent the rest of the day apologising to anyone who came near me and got mostly laughed at. I've only one day left this week so I'm rather reluctant to give my trousers a full wash so I've used a liquid soap and some elbow grease and I think they might just past mustard for tomorrow. Talking of which I might just stick to sandwiches, either that or invest in a bib.

I had a heart stopping moment this morning when I got a missed call on my mobile from a withheld number. I could see my phone flashing at me but I was in the middle of something and couldn't answer it in time. I quickly rang Peter and yes it was Papworth but they just wanted to check when my next Brompton visit was going to be, drat!

Talking of Papworth news came today that my fellow PH sufferer Sita is recovering well from her transplant and is now texting and talking and sitting up. After such a worrying time everyone has heaved a sigh of relief and I for one cannot wait to see her posting again on the PH forum.

Dancing On Ice Watch

Well what can I say? This might well be my very last week of watching. I don't even know who got booted out as we chose to watch a film and I forgot to record the results show. If anyone can enlighten me I'd be very grateful.

On the other hand the Six Nations Rugby starts on Saturday and I cannot wait. I've got my Welsh ruby shirt on standby and will probably scream myself hoarse but I love it.  And please nobody ask me for a prediction of the winner because I'm every so slightly biased.

The Life Of Pies

I love pies.

Sweet or savoury it really doesn't matter, if it's encased in pastry I'm in heaven. So with that in mind don't you think it is rather odd that I've never made one? Well so do I, something I'm about to rectify this very afternoon. I'm about to embark on my very first blackberry and apple pie. I've decided to go for the sweet option for two reasons. I have some left over apples and blackberries and need to use them up. I love savoury pies so much, especially steak and ale pie, that I want to get a bit of practice in as to mess that up would be a tragedy.

As with cakes, pastry is not my forte and I either end up with a sticky mess or something so dry it resembles cardboard so I cheat and get ready made in, which is what I've done this time. I'm hoping that just rolling it out and slapping it on top of all that lovely fruit and sugar will do the job, after all I can't really mess something so simple up, can I?

The snow vanished in the blink of an eye last night when we were subjected to heavy rain and high wind. What a change a couple of days make. According to my weather station 15mm of rain fell over night, it doesn't sound much but combined with all the melting snow everywhere is pretty soggy this morning. What I hate most about the snow going is how dull everywhere looks.

While I'm writing this I've got one eye on the tennis where Murray is playing Djokovic in the final, so far it is one set all and dead even in the third set. My blood pressure on the other hand is going up and up. I would love Murray to win as I really think this could be his year but Djokovic is a formidable opponent, not known for giving in easily. I have a feeling this will go to five sets with tied breakers all the way.

Apart from the making of the pie I have a totally free day. I have done all the little jobs I had lined up this weekend and am looking forward to an afternoon of sloth before four days of work. To top it all we won't have to drive down to Hatfield this afternoon to take Andrew back to college. He will be able to go on his bike which both makes me relieved and worried. I am relieved that he has his independence back while at the same time dreading the thought of him shooting down the motorway. That's the trouble with being a mum, you are never happy.

The change of weather has made a dramatic if positive change to my breathing and I feel better than I have in days. I've managed to abandon my oxygen while moving around the house and my lips have turned back to their gentle lavender shade so things are definitely looking up. We've even managed to turn the heating off for a few hours this morning as we were getting too hot!

Well I'm afraid the tennis has won and I just have to go and sit and watch it rather than 'just keep and eye'. With a bit of luck I will be a very happy bunny this afternoon, but i wouldn't count on it.

Keep Calm And Keep Writing

As of yesterday we still had snow and, God help us, we were expecting another 5 - 10cms last night Which thankfully didn't arrive. On the other hand Andy Murray is through to the final of the Australian open so I wouldn't have minded being snowed in on Sunday at all. This morning though the snow  is thawing and we have a temperature above freezing, practically summer.

It was a busy morning on Friday with the Warfarin clinic and a trip to Tesco's taking up most of the morning. Both, unfortunately, were pretty uneventful. The clinic was unusually efficient and I was in and out in under thirty minutes, while Tesco was grave like. I suppose with the snow, the post Christmas blues and the schools being back there were a lot fewer people about.

In the afternoon we went off to Hatfield to pick up son number two in the hope that this Sunday he'll be able to ride back on his motorbike. He rode up to visit just before the snow hit and his bike has been grounded ever since. With the forecast saying the big thaw will set in today we are all hoping this will be our last trip down the motorway and he will get his independence back.

The weather is playing havoc with my PH.

Every time I venture outside I'm in agony. The cold air causes pain like you wouldn't believe and my breathing just gets worse and worse. I'm not so bad indoors in the warmth though sometimes changing from warm to cold or cold to warm so suddenly leaves me feeling dizzy and light headed as I gasp for breath. Using the oxygen helps a bit as does covering my nose and mouth with a scarf but nothing is fool proof unfortunately. Of course the cold weather also effects my skin and I am aware that my lips and finger nails are almost always blue now but in this weather they are almost black. I could quite easily audition for a zombie movie and I'd save them a fortune in make up too.

Those that know me and see me regularly don't pay much attention but yesterday I had to go and see the Occy Health doctor. He is new and has only seen me once before. At our last meeting there was a look of terror in his eyes as I clanked in with oxygen tank and pump attached. I have a feeling he has never met a PH patient before. This time his jaw dropped when he saw me and he wanted to know if I would like to go home. I reassured him that this was 'normal' me when it's cold but I don't think he was too convinced.

A friend of mine and fellow PH sufferer had a nasty experience yesterday. Stacie also writes a blog about her experiences, the link is on the sidebar of this blog, and very good it is too. In her latest blog she was talking about the possibilities of going onto the Flolan pump and the fact that she has been on the transplant list for nine months now. To her utter astonishment she received an email from one of her followers that was less than supportive. The writer said she also had PH and was wheelchair bound and yet had not even been put forward for transplant yet. She wanted to know what right my friend had to be put on the list when she was clearly not as ill as the emailer herself. This naturally upset my friend as secretly we all feel guilty about being put on the list when there are so many others denied the chance. However that doesn't give an embittered, sorry for this, bitch the right to be so nasty to someone just because they have something she doesn't have.

Now I suppose I am fortunate in the fact that I can see a little bit of both sides of the coin.

I was denied transplant and my goodness was I upset. However, and I'm sure my PH friends will correct me if I'm wrong, I don't think I was ever bitter or nasty to those who had got onto the list even though the jealousy burned strong for a while. After being put on the list I can understand feeling a little guilty about it knowing how many miss the mark so I know how both the emailer and the recipient must feel. Unfortunately being ill doesn't automatically make you a good person and those of us who choose to write openly about our lives just have to remember that and carry on. I hope this will not put Stacie off being so open in her blogs because it is her openness that makes them so interesting to read.

In the news I fell about laughing at a scandal that erupted earlier this week over a puppet show for the under fives. The BBC unwittingly aired a Tweenie programme that contained a puppets that looked like Jimmy Savile. My God, such a heinous crime! Parents were ringing in in their droves and at least a hundred complaints were received. Honestly these parents really need to get over themselves. Do they really think their little babies are going to be corrupted by a puppet that looks vaguely like a dead person? The under fives will have no knowledge of Jimmy Savile or his crimes, to them it is just another funny puppet that makes them laugh. OK, I agree that the BBC could have taken more care about what they were showing when the subject is still so sensitive and the investigation is still on going but there has to be sense of proportion.

Jimmy Savile existed, he existed in a very public way. During that time he did some truly awful things but at the same time he did some truly good things too. Stoke Mandeville hospital would not be where it is now without Savile's tireless fund raising for instance. Jimmy Savile cannot be wiped from history so we are all going to have to live with what has happened and eventually move on. Jimmy Savile is dead so no punishment can be laid upon him but we can learn from the experience and put measures in place to prevent a similar situation arising in the future. We can't turn back the clock and we can't kick up a fuss every time his name of image appears.

Well I have hungry mouths to feed and a pile of ironing waiting for me. Fortunately I also have Silent Witness recorded to watch while I'm doing it.

Headaches

Hmmm, I don't know whether I should be writing this blog or not. I'm tired, fed up and so bored I could chew my own feet off.

The new shift patterns have come in and I don't think I was quite prepared for enormity of the change. I'm having difficulty with the extra noise and heat all the extra bodies bring and I'm finding it quite stressful working with people who I don't know. I was comfortable with my old group as they knew me and got used to me when I was fairly well. The new people tend to be a bit taken aback when I walk in with my oxygen and my pump and it's all a bit awkward. I've come home with a nagging headache the last two days and I'm sure that's down to a mixture of the stress and the noise. It doesn't help that I'm being bullied again. Hey ho, I don't know what it is the culprits hope to achieve by their actions but if their lives are so boring they have to try an make mine a misery then so be it. On the plus side leaving two hours earlier than normal means driving home in daylight, which has to be a bonus. It doesn't mean much now, except more time in front of the TV but come summer, provided we have a summer, I can see a couple of hours being spent in the garden with a good book.

Still everything takes a bit of getting used too and it would be unfair to moan without giving things a fair go. Things, as they are apt to do, will work themselves out in the end I'm sure. And when we are used to the new arrangement I'm sure we will get on fine.

The snow still lies thick around the village and more was falling as I drove home thins afternoon. Although the main roads are now clear of the stuff my road is a slushy mess that freezes overnight making getting out in the morning a bit of a trial. I have to say I am way past 'over it' now. I've had a few dodgy moments in the car park at work where I've almost slipped over and this is one thing that terrifies me. Not only will I be like a turtle on its back with the oxygen tank etc but I can't get the warning my consultant gave out of my head.About two years ago during the last really bad bout of snow I'd struggled in for an appointment and when I got there he gave me a dire warning. He related a tale of a PH patient who had slipped in the snow, punctured a lung and bled to death. If anything is going to make you watch your step in icy weather a tale like that will.

To cheer myself up I've been looking at possible holidays in warmer climates.

It is all pie in the sky at the moment of course as I can't get a 'fit to fly' letter. However I can dream and so far I've pencilled in Australia, thought that might be tad too hot right now, Cyprus, Rome and Hawaii. Two I've already visited and two I have not. The only competition is which one to go for first when I'm finally well again.

And so the tricky question of whether to stay put or leave raises it's head again. I've decided to grab the bull by the horns and have written off to find out how much retraining I'd need to return to teaching and at what cost. If I can do it as home study, there is nothing to stop me starting now in anticipation of a new life to come. I know I'm going to have a lot of time for study as I recover from transplant but it does no harm to make a tentative test of the water now. After all if I'm going to have to deal with playground bullies I may as well deal with the real thing and get paid a hell of a lot more for doing so.

Well I'm off to get a cuppa and relax. Last day tomorrow and then three glorious days off, can't wait.

Snowboarding

No not me but the dozens of kids on the hill outside my house who live in the same village as the school but for some reason cannot get there.

This is one of my pet peeves, it was when I was a teacher and it still is. When I was at school (at a pupil) we walked there whatever the weather. If the heating broke down we sat in freezing classrooms with our coats on. The only time I ever remember being sent home from school was when a pipe burst and the toilets stopped working but we were back the next day.

Of course today's children face so many more hazards on the way to school these days than we did. I mean every single male in a car must be a paedophile and if they are not then they must be drunk, on drugs or just a plain dangerous driver just waiting to mow down the first child that dares to set foot on a zebra crossing. OK, I will allow that there are more cars on the road than there were in my day but that is mostly because every parent drives their kids to school now. And of course snow makes all these dangers so much worse and so terrifying that all children must be kept at home for 'health and safety' reasons. Excuse me but what is so safe about going backwards down a hill on a tea tray or pelting passing traffic with snowballs? If they were at school they wouldn't be able to risk a broken leg or cause a car crash, where is the health and safety when these things happen? Which they will, and do.

What today's parent don't realise that they are in fact their children's worst enemies. The drive to school denies their kids so much. Apart from the obvious health benefits of a good walk during a day when the majority of the time will be spent sitting down, today's fearful parents are raising a generation of even more fearful children. What's even worse they are preventing these children from learning to deal with the outside world. Learning to be safe when out and about is something that you can only learn with practice. By all means walk with your child until you are happy that they can do it by themselves or do as I did, get a group of kids together so they walk with each other, the old 'safety in number ploy'.

Of course the schools are not blameless in this.

Not only are today's parents more fearful they are also more litigious, ready to sue anyone at a drop of a hat. Whereas in my day if little Johnny fell over in the playground and broke his arm is was an accident. Now it is a financial opportunity. Unfortunately schools and councils, rather than stand up to this nonsense are more inclined to waste a day of education to protect their budgets than run the risk of a large payout.

And talking of injuries in the snow...

Dancing on Ice Watch

Well I'm sorry but I wasn't impressed. Before last night's show there was the usual health scare drummed up in order to try and inject a little suspense and anticipation into the event. Now I'm not saying Beth Tweedle wasn't ill, I just think that maybe the show's producers over egged the pudding a bit to add a little drama.

However the real drama came when Oona found herself in the skate off with Welsh rugby hunk Gareth. Anyone with a brain knew how this one was going to end including Oona. The result was so obvious that really they could have just bypassed the skate off and given her the flowers. However in the faint hope that Gareth would fall over, catapulting his partner into the audience as he did so, the skate off when ahead.

Gareth went first and was near as damn it perfect. Then it was Oona's big moment and knowing that there was no way they were going to beat Gareth her partner went for the sympathy vote in a big way. It didn't look like much of a fall, we'd seen worse in the endless 'practicing' videos before each dance, but looks can be deceiving and ice hard. Mark had managed to dislocate his shoulder which was promptly popped back and with much rolling of said shoulder he heroically carried on. It was all in vain though and despite much sympathy the judges vote Oona off.

Well after all that excitement I decided I needed a drink and poured myself a very small Baileys then settled back to watch Poirot.

Today I'm rushing around trying to get things done before going back to work tomorrow. As you know all our shift patterns change from tomorrow and this means I only get two days off between shifts this week when I usually have four. At least it is only for this week but I have a feeling I'm going to be a very tired little bunny come Thursday.

Well best get to it, I have my uniform to iron this afternoon and then the floors to wash, snowy feet make a terrible mess on wooden floors, and then I'm putting my feet up for the afternoon.

I Want To Go For A Walk

Someone at work asked me yesterday what I'd want to do once I'd had my transplant and without hesitation I said 'go for a walk'.

I know I should be saying things like 'promote organ donation' or 'run a marathon for PH' or 'trek across the Andes', and I will do things like that, things that I'd put off until I had time or could afford it, but right now I just want to go for a walk. The sheer joy of just pulling on my thermals and hiking boots and setting off along snowy bridal paths to lose myself for an hour or two is a far away ambition at the moment. Doesn't it sound silly that something so mundane should become an all consuming ambition.

Quite understandably my colleague said she understood but the wry smile that went with it gave away the fact that she didn't, not really and not in a bad way. My colleagues are terribly understanding and as a group probably know more about PH than most GPs surgeries, having lived with it for the last three years. However unless you have a condition it is impossible to really understand how it feels. I, for instance, didn't understand the sheer terror cancer can bring until I was told I could have it. I never want to feel like that again. So for her the thought of going for a walk as an ambition was a sort of non ambition because she can do it anytime she wants and without thinking beyond what to wear. For her an ambition is trekking across the Andes or similar. And now I'm going to turn all Del Boy but this time next year maybe I will feel the same, though I think it is more likely that I will be giving thanks to my donor and be in awe of the miracle that gave me my life back, here's hoping.

This week has been both difficult and uplifting.

The snow has made life really difficult, my breathing is laboured and my chest feels like someone is sticking knives into it. There have been times when the pain has been so sharp and caught me so suddenly that I've nearly cried out in the middle of the office, that would have sent everyone into a panic. Don't get me wrong I love snow, the sheer beauty of a white field totally untouched is one to behold, driving in it is another matter. On Friday, when the snow was really coming down I was eighteen miles away from home helping others who had crashed or broken down. So when it rolled around to six and it was my turn to pick my way home I was more that a little nervous. Fortunately I made it to the duel carriageway and then onto the motorway both of which were relatively clear. It was the last mile into my village that caused the most problem as I slipped and slithered along the narrow country roads until finally I made it to my driveway and safety. I was tired, cold and in pain so had a hot tea got changed into my woollies and collapsed in front of my TV knowing full well I was going to have to do it in the other direction the next morning. Thankfully by then all the roads had been gritted and ploughed.

The uplifting part was getting awarded a citation for my parting in a very traumatic incident at work. I was invited to attend an award ceremony on Thursday night and although it meant staying out late on a school night, I've never been awarded anything before so I was determined to go. It was a lovely evening though I left as soon as the ceremony was over and celebrated with a bag of chips on the way home. Peter is going to frame my certificate and hang it on the wall. I have to say I was more excited than when I got my degree. I worked bloody hard for my degree so felt I deserved it, the award was a complete surprise and therefore more exciting.

Next week I start my new shift pattern which means for this weekend only I only have two days off instead of my usual four. However I only work three days next week and for shorter hours so I'm hoping I will manage. Then it is back having three rest days and no more weekend working. I decided that it was time to shorten my hours a bit and by finishing at four instead of six I should always making it home in daylight. Hopefully my health will improve and I will have less sick days on the new pattern as I won't be so tired. After three years of ten hours days I think it is time I took it a bit easier, don't you?

Today it is snowing again but today all I have to do is put my feet up and relax, that is after I've made lunch, stripped the beds and washed the towels.

Opt Out To Save Lives

Today's visit to the Warfarin clinic came without any drama today, which is just as well as I wasn't in the mood. I hate going out when it is cold my breathing just gets worse and worse and my chest aches like hell in cold weather.

Fortunately I was in and out in no time, and then, after a quick dash around Tesco's, it was back home to warm up and a couple of hot tea's to warm me from the inside.

Andrew is taking the first of his exams today and I'm anxious. I know he will be fine but for me exams were always an ordeal so I probably worry more than he does. I will call him this evening to find out how they went.

I'm making a special appeal in today's blog. A few weeks back I asked everyone to sign up on the NHS organ donor list but this appeal, although donor related, is slightly different.

Our country is one of the few, especially in Europe, who have an 'opt in' scheme for donors rather than the 'opt out' system other countries run. It is no coincidence that there is a chronic shortage of donated organs in the UK and three people a day die waiting for a transplant because of this system. To put it in context, I was placed on the transplant list on 21st December 2012, that's twenty five days ago, and in that time seventy five people will have died because there wasn't an organ available to save them.

So what does 'opt out' mean? Well, rather than having to sign up to be a donor, consent is assumed when you die that you want your organs to be given to someone else, unless that is, you give specific instructions that only some or none of your organs can be used. If this scheme comes into being here it will instantly double or even triple the amount of organs available and therefore cut the number of deaths on the waiting list accordingly. Research shows that almost 90% of those interviewed would consider being a donor but only 50% or less ever get around to signing up.

However as always our government keeps putting the debate on changing the system on the back burner so in order to force the issue we need 100,000 signatures on our petition to get the issue discussed in the commons and stop it being put off. Please follow the link below and give people like me a chance.
Thank you.

http://epetitions.direct.gov.uk/petitions/38220  

In the news I was shocked to hear the HMV has gone to the wall, yet another big name off our high streets. The main reason was competition from Internet sales. Have none of these retailers learned yet that if they charge ridiculously high prices of course customers are going to go elsewhere? Surely it's not rocket science is it? I was even more shocked to find that vouchers and gift cards will not be honoured. I'm sorry but they must have know they had problems when they were busy selling hundreds of the things over Christmas. In my mind that is little short of fraud as they were selling them unsure if they could ever be redeemed.

Well it is back to work tomorrow, I'm praying it does not snow overnight, I suspect that with one week to go before the new shifts start it is going to be a bit tense. Next blog Sunday.