Wednesday, 31 July 2013

Hot, Bothered and Busy.

I'm starting this blog with just a little reminder.

Please enjoy this blog, please feel free to leave comments, good or bad, and please feel free to let others know about this blog. However, please DO NOT use this blog to advertise you commercial enterprises, religious or political views or businesses. This blog is free to everyone and is here for one purpose only, to inform people about life with PH. It is fine to link you blog if you also write about PH or transplant because it is useful for people going through the same thing to read how different people cope. If certain people continue to try and use this blog for financial gain then I'm afraid I'll have to do something I've never done before and that is block you. You have been warned.

Right back to the matter in hand.

Think I'm too big for your desk? Think again!

Today I feel completely drained. The last two days have been pure torture as the heat in the office continues to build. Yes we do have more fans but they only move the hot air around so any relief is brief to say the least. I had three fans on me yesterday and could still feel the sweat running down my back. At least one person has actually been so badly affected by the heat they have keeled over and had to be sent home. As for me well every time I've stood up I've felt dizzy. However it seems we are about to be rescued as a man came in yesterday to tell he believes the air conditioning has been fixed. Can't wait for Monday to find out whether this is actually true or not.

Outside of the office it is distinctly chillier as thunderstorms have given way to drizzle, grey clouds and a cold breeze. On the plus side I'm feeling 100% better and my appetite has returned, you should have seen the plate of pasta I downed yesterday. Now ideally if it could be this temperature, or maybe a couple of degrees warmer and sunny, I'd be a very happy bunny indeed.

I have got a rather hectic five days lined up.

Today I'm making up the spare room, running around with a duster and generally tidying up for Svet's arrival tomorrow. This afternoon I'm out looking at tumble driers. Ours died one Monday when we tried to use it on the stuff that had got caught in the thunderstorm. At sixteen years old we discovered it was cheaper to replace it rather than repair it so with that in mind we are off to compare practically everything about them before making a choice. It will be riveting I'm sure.

Tomorrow it is an early start to meet Svet at the airport. Then in the afternoon we are taking her down to Hatfield to see Andrew while we go and do a bit of shopping.

Friday Andrew arrives home after a week of night shifts and Peter and I leave for Wales.

Saturday lunch with the family, a quick look around the shops and an evening on the prom eating ice cream or chips covered in curry sauce, a very rare treat.

Sunday will be a leisurely drive home and then back to work Monday. Next weekend I'm doing....nothing.

Your ironing? Now? Really?

Yes I know is seems ridiculous to travel all that way for such a short visit but when you realise that it is two years since I saw my mother maybe you can understand the need to do this. After all I could get the call next week, next month and goodness knows when I'd see her again after that. Worse case scenario, and I'm not being maudlin just stating a fact, I may never see her again. So this trip is really, really important. I do have two weeks off in October when I plan to spend a week in Wales but something inside me is saying 'do it now' so that's what I'm doing.

As I type this I am having to battle with a very furry but determined little body.

Smirnoff is a huge coward when it comes to storms and since we've had a few recently he has been sticking really close to me. This entails trying to fit a very long cat onto a very short desk top, not always with any degree of success. On Sunday he even got up on my ironing board as I was using it so I would stroke him.

I love my moggies with a passion but that doesn't mean I like having to move a leg or tail out of the way whenever I want to move my mouse.

Well better get on with it, time waits for no man, as they say.

Sunday, 28 July 2013

The Little Irritations of Life

We finally had our thunderstorm, well if you can call one flash, one bang and about six distant rumbles a storm. We had a huge amount of rain though and that has perked up the garden and cooled things down considerably. I loved lying in bed last night hearing the rain battering my window. So much more relaxing than the whine of the fan I've had on for the past month. I slept better last night too.

This morning it is very breezy and much cooler with the odd splash of sunshine here and there. Just my type of weather. I know everyone will be moaning about the 'end of the summer' but just two days ago everyone was moaning about how hot is was. You can't win with some people.

After catching up on my soaps I then settled down yesterday afternoon to watch one of my favourite films, The King and I. I always cry at the end but my enjoyment was rather tempered this time around by the banging, drilling and swearing going on on the other side of the living room window.

Last week Andrew blew his exhaust. Peter performed a patch up with a baked bean tin and ordered a new one. The intention was to do a quick switch over and send him on his way. However, as is the way with these things, the old exhaust has different ideas and is proving to be the devil's own job to part from the bike. Peter has now moved onto drilling the old bolts out. Hopefully fixing the new exhaust will be child's play after this.

Talking of Andrew, he is having real difficulty adjusting to sleeping during the day and staying awake at night. This is partly because of the heat and partly because of the noise coming from the garage as Peter desperately tries to fix his bike. At least the heat side of things has been sorted out, for now. I suspect he'll end up getting through Monday night in a daze and then he'll be OK, until he has to get his pattern back to normal for his next shift.

Andrew isn't the only one on nights this week, Laurence is too. He is popping up to see me tomorrow before his shift starts. I will cook something nice for him, I just don't know what yet.

It is our thirtieth wedding anniversary in two weeks. How one earth did we manage that! A lot of my friends have married and divorced twice in that time. I don't know what the secret is, find someone you completely bond with I suppose. We've been through a lot together and nearly come to grief on more than one occasion but we've always managed to work it out. I guess that's where we might differ, we have always been able to talk to each other.

Anyway, I've been scratching my head as to what to get him for this very special occasion. We will go out for a meal, that is a no brainer, and we will probably be very naughty and have a glass of champers or two but I wanted to do something special. Peter has been my rock since I went down with PH. He has worried with me, encouraged me and sometimes put his foot down and ordered me to do things. He needs a medal for courage too. So this year I wanted to show my appreciation by getting him something very special, but what?

After much deliberation and a lot of research I think I've come up with the ideal thing. Unfortunately I can't tell you because I want it to be a real surprise and I can't guarantee that someone won't let the secret slip. So I'm going to have to sit on my hands and keep my mouth firmly zipped. I'm so excited and can't wait to see his reaction.  All will be revealed on the 13th August or later.

The next blog will be on Wednesday, yes really, it will. I have taken a couple of days off so I can go and see my mum but as always there has been a little hiccup.

Andrew is on nights until Friday so we were going to go and just leave him to look after the cats. However he then announced he'd 'sort of got my timings wrong' and girlfriend Svet would be arriving on Thursday morning from Bulgaria and could we please pick her up. Not too much of a problem we thought, we will go down Thursday instead. Who were we trying to kid? Andrew won't be home until Friday and we don't want to leave the poor girl on her own in a strange house, in a strange country. So now we are going down on Friday and will have to be back on Sunday a neither Peter or myself could get the Monday off from work.

It's going to be a very short visit but at least I will get to see my mum, after two years of trying. I also have two weeks off in September so I'm planning a week then, provided our off spring do not come up with any other problems to get in the way.

Well I've got a heap of ironing to do, where does it all come from? And hopefully a restful afternoon making frozen yogurt planned. Until next time.

Saturday, 27 July 2013

Rocking All Over The World

I'd like to start this blog by saying thank you for the many kind comments I've received regarding yesterday's blog. Amazingly the blog got record viewings. It seems Anne's story was being followed by readers not only in the UK but also the USA, Poland, Russia and China, to name but a few. I think it would have been a great comfort to Anne if she'd known that she was being routed for by so many people all over the world. My only regret is that I never knew and so was never able to tell her how much good will was being sent in her direction.

When I started this blog, over two years ago, it was on the suggestion of a therapist who said it would be a good way of expressing all the pent up anger, frustration and sadness that comes with PH. Over time it became a way of keeping my family and friends appraised of my progress. Now it is being read world wide and in turn, hopefully, spreading the knowledge and understanding of the PH journey world wide. It is incredibly humbling to think my burblings travel so far.

It has been a reflective couple of days. Sometimes there is no logic to some of the emotions I've been working through but I'm getting there slowly.

Yesterday was the last of Andrew's hospital placement and he returned home triumphant, with a great big grin on his face. His book was full of comments such as 'awesome', 'excellent' and 'very competent' and one of the anesthetists even told him he was better at canulation than the medical students were. This is a huge relief considering how negative he was about going there in the first place. He is now spending a quiet weekend at home before starting a week of night shifts with The London Ambulance Service on Monday.

The weather continues to cool and my breathing is now more or less back to normal but I have developed a bad throat. Honestly, if it's not one thing it's the other. I am treating it with sage and cider vinegar gargles and surprisingly they seem to be working as things are a lot less scratchy this morning.

This afternoon we are having the excitement of the Tesco run and then I'm settling down for a weekend of catching up on my soaps etc. I've been unusually tired this week so have been going to bed really early and have missed most of them. We are due huge thunderstorms this afternoon so sitting out and reading is not an option.

In the news

More royal baby stuff, this is going to go on for weeks, and the heartening tail of the lost racing pigeon.

Paul, was found after she, yes I know, landed on the deck of a Royal Navy frigate as it was on exercise 300 miles out in the Atlantic ocean. The bird had become disorientated and was clearly exhausted. Racing pigeons are valuable birds so instead of ending up in the pot, she has been fed and watered by the doting sailors on HMS Somerset and will be returned to her owner when the ship returns to port next week. Only in Britain!

And on a final note, has anyone seen that brilliant advert by O2, 'Be more dog'? I've been watching it for almost two weeks now and I only worked out yesterday that it is a cat's face superimposed on a dog's body. Yes I really can be that thick at times.

For those that have no idea what I'm talking about, here is the link.

Friday, 26 July 2013

The Birth of a Prince and The Death of an Angel

Unless you have been living under a rock you cannot have missed the birth of Prince George Alexander Louis of Cambridge.

I was delighted by the new arrival and I surprised myself by the numbers of 'aww's and 'isn't he cute' remarks coming out of my mouth. Now I'm not a baby person but even I got caught up in the moment. However even I have to admit the media coverage was way, way over the top. Instead of various reporters practically doing cartwheels when the announcement came and the cancellation of regular programmes, a ten minute, at most, announcement would have done. I can understand programmes being cancelled when the baby left hospital with an extremely happy Kate and William because then there was actually something to see. Everything else was repetitive, boring and far too much.

Another thing that struck me was how miserable some people are. Now I like the Monarchy, I'm not an obsessive and I don't collect memorabilia, but I like having a Queen. Without her we would be a poorer country in all senses of the word. The blow to tourism alone would be catastrophic and many businesses both big and small would suffer. Yes we will always have our history but there is nothing quite as exciting or glamorous than the prospect of catching a glimpse of real live royalty.

I fully understand that there are people who do not like the monarchy, in fact I'd go as far as to say there are people who positively hate them, and I respect that. However it seems that respect only travels one way with these people, who set out to deliberately spoil the moment. All I can say is that they must be truly miserable, bitter people not to want to rejoice at a new life coming into the world, whoever that life may be.

The other big event this week did not take place in front of the world's media but for me and many others was equally momentous.

Anne Rea died peacefully on 24/07/2013, just one day before her birthday.

The PH community is in shock. We were so full of hope for her, she done so well in the beginning, then she caught an infection and things went downhill cumulating with the rejection that eventually killed her. Anne did not die of PH, she died bravely trying to conquer it in the only way available.

Having visited Anne only last Friday the news hit me very hard. During my, all to brief, visit Anne gave no indication of how bad things were. Either she didn't know or she was protecting me, that's something I'll never know but I now wish I'd stayed longer and not scuttled off with a cheerful 'see you soon' and the promise of a catch up when she left hospital.

When the text arrived first there was complete shock, then distress and then panic.Selfish as it may seem I couldn't help thinking whether I really wanted a transplant at all. I did not want to go through what Anne went through and I wasn't alone apparently. At least two of my PH transplant buddies admitted to having doubts. After a long talk with Peter and a night tossing and turning and weeping for Anne I came to a decision. I'd fought long and hard to get on the transplant list. It took a year of pain and disappointment so should I let one tragedy destroy everything I'd worked so hard for? The answer I came up with was no. Despite what happened to her I don't believe Anne would want anyone to give up their chance of recovery, so why should I sully her memory by using Anne's situation as an excuse for my own cowardice.

Life is not fair, PH is not fair and transplant is not fair. In order to win sometime you have to gamble and sometimes when you gamble you loose.

I will never forget Anne, she was one of the bravest people I've ever met. Breath easy Anne, PH cannot touch you anymore.

Sunday, 21 July 2013

Battling With The Bronzer

Yesterday I finally gave into the weather and bought a skirt and some shoes for work. I've worn my uniform trousers up to now for two reasons. The trousers cover my skinny little legs and make me look larger than I am. And secondly because I never show my legs, when I wear a skirt is is floor length. I wear shorts around the house but never outside.

I decided to go budget end as I will probably be wearing them for a couple of weeks at best. I found a nice little pencil skirt which, at size ten, is just a little too big but means the waist band doesn't cut in when I sit down, and a pair of black ballet pumps. I tried them on when I got home, I don't do communal changing rooms either, and was rather pleased with the result. Being a shortie the skirt comes just below the knee and the shoes make my feet look delicate, a miracle in itself.

However between skirt and shoes were the two skinniest, whitest matchsticks you will ever see. Never having really scrutinised my legs before I was horrified. There is nothing I can do about the shape, or the hidious veins sticking out of the top of my feet, that comes with the PH and the meds, but there was something I could do about the colour. Fake tan! Now before we go any further I have to explain something. Because of the meds I'm on I am not allowed to sunbathe. In fact the sun could really do me some damage so I either have to cover up outside or cover myself in factor 50, hence the pale skin. The times I've ignored the advice I've emerged looking akin to a dalmatian, lots of dark spot but no overall tan. As a result I've just covered up and forgotten about my legs for near enough five years.

So yesterday out came the hair removal cream, I'm not allowed to wax or shave for fear of infection. That horrible task done and dusted I went in search of some fake tan. I took Andrew with me for some moral support, no I have never bought fake tan before, and we scoured Boots looking for something that was easy to apply, didn't stink to much and didn't look too orange. Andrew happily tried a few on his arms until I pointed out he would wake up with brown patches. A panicked going over with a wet wipe ensued and then it was back to business. In the end I chose a mousse that not only developed over two or three hours but also gave instant colour so you could see where you were putting it.

Back home I read the instructions twice and then decided to leave things overnight in case the bronzer reacted with the hair remover. Knowing my luck they would and I'd end up in A&E with peeling skin or something. So this morning I hopped in the shower and used a scrub on my legs to ensure they were void of anything that could upset the bronzer.

So the time had come. There was no going back now, it was bronzer or embarrassment, well actually it could still be embarrassment if I got this wrong but I'll tackle that one if it happens. First up was how to put the stuff on without getting browm palms, a dead give away and a look favoured by some teenage girls I saw in town yesterday. I didn't want that so out came the medical gloves. I read the instructions again, gave the can a good shake and squirted a golf ball sized puff of mousse onto my hand. Oh my God, it was so dark. I almost stopped there but decided to give it a go and started rubbing it into my skin. After about two minutes of rubbing and smoothing I ended up with a golden brown leg and not one streak, this is more like it. Encouraged I did the other leg and ended up with the same result. I wandered around in my underwear for half and hour until I was convinced it had really dried and then slipped on a pair of baggy joggers just in case any comes off on the furniture. Result! Of course, what it will look like once the tan has developed I don't know but I'm hoping it will be just as nice.

So crisis averted I feel I can show my legs off tomorrow with a modicum of confidence.

Today I'm feeling a bit reflective. It is seven months since I was put on the list at Papworth and still no sniff of a match. Not even a false alarm. I know false alarms are upsetting and a big waste of everyone's time but at least they are definitive proof that you are on the list. Sometimes the months of not hearing anything can make you doubt. Still on the positive side I'm getting closer to the the window of nine to eighteen months I was given when put on the list. If it did come early that would be an incredible bonus but in my heart I know I'm in for the long haul. Damn it!

The weather is still overcast and much cooler than it has been. This is a mixed blessing. It has given my breathing a bit of a respite but has meant I've spent my weekend indoors. Tomorrow the temperatures are supposed to go rocketing up to 30c or higher. I just wish it would rain, just briefly so that the grass can turn green again. It's a bit like the Sahara looking out of my kitchen window at the moment. Nothing but brown. The cooler weather has helped the old eating plan though and yesterday, not only did I put away a huge plate of pasta, but I indulged in a bagel smothered in cream cheese for tea.Yum! Yum! I just wish I could eat this stuff when it's hot. My ankles and stomach have shrunk a bit too so I'm not retaining so much water. And finally I'm having unbroken sleep. Sometimes it is good to have a blip.

In the news I was sad to hear of the death of Mel Smith who passed away from a heart attack yesterday. He was only sixty. I was a great fan of Not The Nine O'clock New and Alas Smith And Jones, I just wished they'd made more of them.

The ironing awaits and then it is all hands on deck to ensure Andrew hasn't forgotten anything before he heads back to uni this evening for his second week at hospital. Having had such a good week previously he is much more relaxed this time round, thank goodness.

I would say next blog Wednesday but if it is really hot I just don't feel like sitting in a hot study straight after work. So maybe next blog on Wednesday but far more likely Friday.

Saturday, 20 July 2013

Cooling Down

Surprisingly I woke up refreshed and raring to go at seven this morning. I expected to be shattered after yesterday's little outing but I appear to be fine and dandy.

As a result by nine I'd stripped the bed and washed the sheets and have just put my uniform on to wash. At this rate I'll have my entire day's housework done by lunchtime. I've now had a shower and some breakfast, well I've been ordered too, the breakfast that is not the shower, I don't smell that bad I promise, and am taking some time out read the newspaper and update this blog.

The weather is a lot cooler today. We have thick cloud cover and a breeze and, standing out in my summer dress to hang the washing out, I actually felt a little bit cold for the first time in weeks. The good thing is my breathing has improved dramatically and I can even get up the stairs with barely a puff this morning. According to the weather forecaster it won't last and next week it is supposed to be even hotter than it's been this week. Oh Lord! I'd better enjoy the cool while I can then, as it sounds as though I'm going to be reduced to a wheezing wreck by Wednesday.

Andrew is home from his first week at hospital and has proudly shown me his sign off book. There a loads of 'excellent', 'well done' and 'very good' comments in it. If he continues to get the same next week he'll pass his hospital placement hardly breaking a sweat. There was one little blip though, he managed to give himself a needle stick injury. Thankfully the patient did not have any nasty illnesses and subsequent blood tests show Andrew to be fine. As he said, it had to happen and now it has he'll be a lot more careful in future.

This afternoon we have the Tesco run and then I intend to spend the rest of the weekend relaxing and, hopefully, stuffing my face with all the goodies I intend to buy.

One of my pet hates was triggered yesterday. I was sitting on the settee, in the living room with the windows wide open as I read when a voice floated in from the street.

'I'm so glad the young people enjoyed their trip.'

I glanced out of the window and saw two women dragging two very tired looking pre school boys up the road. 'Young people'? What the hell is wrong with calling children, children? In my book children are children until they hit thirteen when they turn into teenagers. Young people only become young people in their early twenties. I hate all this political correctness crap and grow to hate it more every day.

In the news there is very little to catch the eye. Half the newspapers are reporting on the 'heatwave' and the other half are speculating when Kate is going to have her baby.Personally I rather hope she has already had it in secret and is enjoying a few days of peace and quite to get to know her baby before the media storm breaks.

Talking of storms I notice the wind is getting up a bit. I really hope for just a day of rain as my once green grass is now brown.

Well time for a cuppa and a packet of crisps.

Oh. oh, oh, I forgot. I did win on the lottery, a whole eight pounds. Well a win is a win.

Friday, 19 July 2013

The Lesser Of Two Evils

After such a hot week I was quite glad to find myself bowling along the A428 towards Papworth in an air conditioned car in beautiful sunshine.

It has been a tough week one way or another. My legs, feet and stomach are swelling in the heat making me feel very uncomfortable. Some days I leave work with feet so swollen it is hard to walk. The extra diuretics are helping though but that is not necessarily a good thing. I will explain why later.

My daily routine has been changed to cope with the weather. I get up at 6am in the cool and shower in tepid water before having a light brekkie and heading off to work. There I commandeer a fan and a chair as near to the door as possible in order to get every little breeze thats going. I eat little, mostly fruit, but drink lots throughout the day with the occasional trip to the loo for a splash of cold water on my face and neck. Once home it is another tepid shower and then a sit down for a read of the newspaper with yet another drink. I eat a very light tea around  6pm then I do my meds and go back to the settee where my appetite increases in line with the decline of the heat and I have another snack around 9pm before it's upstairs and a wash down with a cold flannel before bed. It is very boring but it seems to work for me and has so far stopped me having any serious problems and that is all that matters.
Not all for me, Peter's is on there too.

Today I went for my regular check up at Papworth. I always go to Papworth about three weeks after visiting the Brompton so that test results have time to be transfered from one hospital to the other. Overall it was good news. They are very pleased (and quite surprised) that I am still stable and said that the longer I remain this well the better my chances, which is very good to hear. I was given advice about taking care of myself in the heat which basically amounted too, 'if you don't feel like doing something then don't'. To be fair the doctor did say I seemed to be doing the right things so as long as I continued to cope the way I am I should keep doing it.

Then we got on to the thorny subject of my weight. As you all know I've been rejoicing lately at my apparent weight gain until it was pointed out to me by the Brompton that I was retaining water. I've been on extra diuretics for a couple of weeks now and, although my swelling has gone down, it means my weight has also dropped. In fact I've lost 3kg since my last visit. However they did take into account the fact that no one tends to eat a lot in very hot weather so were not that hard on me. They told me to eat what I could and provided I started to gain again when the weather cools down I should be fine.

Whilst there I dropped in on Anne.

Anne is still in CCU but is slowly making progress, she will be there for another week at least but hopefully will be back on the main ward soon. I must say she was much more cheerful and positive than I think I'd be and I can't help but admire her courage. It was really nice to see you Anne and if I can I'll be back to visit you again soon.

Having heard that I'd dropped weight again Peter took me to KFC for a greasy meal. I surprised myself by gobbling everything down in double quick time. The fact that they had the air conditioning going full blast and it was like sitting in a fridge probably helped. Once back out in the heat I felt nauseous and bloated but as it was the first full meal I'd had in around a fortnight I felt it was worth it and the feeling soon passed.

Arriving home I received more good news in the post with a letter stating Barclays have paid back PPI on two car loans I'd taken out in the past. I received just under £3000 which has been put straight into my savings until I decide what to treat myself with. I'm still waiting to hear back from Barclaycard but they said they would let me know by the 7th August, so I still have a bit of a wait for that one. As I'm feeling lucky I'm splashing out on a lottery ticket tonight. Watch this space!

The Apprentice Watch.

I really was in two minds whether to bother watching the last episode. Neither of the remaining two candidates really rocked my boat and, probably for the first time ever, I didn't care which one won.

The choice was between 'Bitch Queen from Hell', Luisa or Lipstick Leah. Both were 'passionate' about their businesses and both would give 110%, ignoring the fact that you can't have more than 100%.

Luisa wanted to start a web based bakery supply business but became a bit confused about who she was aiming for. She also chose to ignore market research feed back and aimed for a female market. Isn't Britain's most famous baker a man? The website was so pink you'd have thought it was designed for Barbie, rather than by a barbie.

The Rod Of Asclepius, Greek God of
Healing and Medicine

Leah went for a clean clinical look for her cosmetic surgery business and insisted on the rather disturbing name of 'NIKS' despite market research showing the public hated it. For me Leah lost all credibility when she added what she thought was the symbol for medicine to her logo. What she actually added was the symbol for commerce making me think her motive is purely financial rather than her desire to 'help people look their best'. Wouldn't you expect a trained doctor to know the difference? At that point I almost favoured Luisa.

As you can see the symbol for medicine has one snake and no wings. The symbol used by Leah has two snakes and wings at the top of the staff and is actually the Rod of Hermes the God of occupations and trades.

Lord Sugar was understandably worried about going with Leah as he worried about the 'morality' of the business. However Luisa put herself on dodgy ground when she said her other businesses 'look after themselves' which LS took as a sign of poor commitment. Leah then pointed out that the margins on her botox injections would be greater than the margins on Luisa's cupcakes and greed won the day.

So a disappointing end to a great series. I just wish Lord Sugar had swept the two bimbo's aside and called Neil back for another go. If it had been the old format of getting a job instead of starting a business, Neil would have walked it, no question.

Right I have a bag of grapes, a cold drink and the newspaper to read, more tomorrow.

Sunday, 14 July 2013

Hot! Hot! Hot!

The hottest day of the year and where was I? At work that's where.

I'd already decided that, in view of my breathing problems in the heat, that I was going to spend the majority of my day in the shade reading. Peter and Andrew had set the decking up for me very early and I'd chosen a great book, The Private Patient by PD James, made up some more smoothies and got my oxygen at the ready.
Unfortunately there was a problem and I was ordered into work. So in sweltering heat I put on my uniform, grabbed my oxygen and took off. Although technically I'm not supposed to be ordered in due to my health I actually didn't mind much. Once I'd arrived I was told that I  would be let go as soon as possible and that if I started to feel poorly because of the temperature I was to say. In the end I stayed just over four hours. I realise it isn't as long as most of my colleagues but I still feel happy I did my bit and I'm pleased that I was able to stop someone else getting the call.

I was home by half past two and in the garden by three, after having something to eat. So I didn't finish the book as I'd intended and I was feeling really tired and out of sorts but at least I didn't have anything to feel guilty about, at last.

After a rather refreshing night I woke naturally around seven and was very pleased to find my breathing was much easier. The temperature had dropped overnight and I woke to a misty gray day. By eleven I'd done two loads of laundry and hung them out, ironed everything in sight and changed the beds. I don't know where this renewed energy has come from but I hope it hangs around for a bit.

Straight after lunch we are driving Andrew down to his new digs as he is spending the next two weeks working at the Middlesex Hospital where he will be learning to intubate people in theatre. Needless to say he is really excited and yet nervous at the same time. Who wouldn't be?

Then the late afternoon/early evening will be mine so, depending on the weather, I'll either be stretched out on the decking or stretched out on the settee.

I now have two PH friends in hospital.

There is no change in Anne's situation though I'm told she is in good spirits. I can't wait to see her on Friday, I hope she will be well enough for a chat.

The other person is Stacie, who unfortunately got an infection in her line. Poor Stacie she has had nothing but trouble since the line went in. Firstly she developed an allergy to the dressing that's put over the entrance site to the line to keep it clean. I've never seen anything like it, the area was red raw. Then this has to go and happen. Of course we all know that the only way any of this will stop is for Stacie to get her transplant. She's had one false alarm so far and has been on the list for over a year so I really think she's due some luck. Let's hope transplant week will give us all a better chance.

Talking of false alarms I had one on Monday. I was sitting having a cuppa in front of Eggheads, I love that programme, when my mobile went. 'Hello this is Anne one of the transplant co-ordinators from Papworth', pause, 'how are you today?' Oh. My. God. I thought, this is it! Sadly it wasn't 'it' she was just ringing to see whether I could attend an event at the hospital. Once my heart rate returned to normal I felt quite angry to be honest. I don't think they realise the stress they cause when they ring out of office hours, the time we are most likely to get 'the call', for routine, trivial things like that. I think I'll be having a word at my appointment on Friday.

Well I'd better get going, it's an early lunch today and then off we go to London, at least it's not hot.

Friday, 12 July 2013

Incredible Hulk Mum

I'm sorry I missed the update on Wednesday but all sorts of things have been going on this week.

The heat is really getting me down. Although I love the sun itself, working in an office with no windows, no air conditioning and around 50 computers going full blast is not much fun when your lungs are compromised. The sweat was pouring off me and I found I was having to use my oxygen more often than usual. A couple of times I came close to fainting but there is no use in complaining. Nothing can be done and we are all in the same boat. Someone did take me aside and asked me why I was turning up and said if they were me they'd stay at home. They are not me though and I'd hate to think what my colleagues would make of me taking time off when we are so short staffed just because I'm finding it a little hot. I feel bad enough when I'm really ill but just because I'm finding it hard to cope, well the stress would probably negate any benefit gained.

To add to my stress this week I've found Andrew's university is not being exactly helpful.

Like most university courses, Andrew's is based on modules. Andrew has passed all this year's modules except the placement one. While on placement he has to get a book signed off every time he does something such as put a collar on or performs CPR to prove competency. In order to achieve everything in the book the university have to ensure a fixed amount of hours on placement. Andrew is currently owed 121 hours of placement and, when he contacted his tutor, was astonishingly told that not only would he fail the year if he didn't complete his book but to go out and sort out the hours himself. I went mental! I contacted the head of department and played merry hell with him and then went on to wipe the floor with said tutor. The result, the university will do everything it can to fulfill it's obligations regarding placement hours and if Andrew cannot get everything signed off because they have failed to give him the opportunity he will not be failed. He will just have what hasn't been signed off added to next year's book. Result! As I've said many, many times. Do not mess with me, particularly when I'm hot and bothered.

So feathers ruffled I decided to cool down, literally, before relating all in my blog or it would just turn into a big long rant. Hence the missed Wednesday.

My weight has started to drop, whether it is because I'm living on fruit at the moment or because of the extra water tablets I can't tell but I'm like the incredible shrinking woman and clothing is beginning to hang off me again. I'm sure my weight will increase once the weather cools and I feel more like eating but it really feels like one step forward and two massive leaps backwards at the moment.

Talking of massive leaps backwards Anne has had a bit of a rough time of late and is back in ICU. I'm due in Papworth for a check up next Friday and I hope to be able to pay her a visit while I'm there. In the meantime chin up Anne, everyone is behind you and everyone in the PH community are offering up prayers and sending you their thoughts.

Apprentice Watch

I know I promised you a double whammy this week but I can't remember what happened last week to will watch it again tonight and report tomorrow..

Last night though was the interview task, my favourite of the whole series. This is the week where the candidates are picked apart by associates of Lord sugar in a series of interviews. Even better it heralds the return of Margaret and her eyebrow. Honestly that eyebrow deserves a show of it's own it is so expressive.

So one by one the candidates were ripped apart, found out or sunk their own ships. Jordan's was the most shocking when it was discovered the business he wanted Lord Sugar to invest in wasn't even his. The interview was terminated and Jordan was the first to be slung out of the boardroom. Francesca swiftly followed despite having an idea that could actually prove very popular. The reason? She was deemed to be too boring. Last to go, and probably the saddest and most shocking departure of all, was Neil. His idea was declared unworkable and Neil hung, drew and quartered himself by refusing to consider a back up plan.

So the two going through to the final is Lipstick Leah who, surprise, surprise, want to open a cosmetics clinic and Luisa who want to start an online bakery supply business. Exactly the two candidates I least wanted to win. Next week will not be enjoyable watching for me but at least I get to watch eyebrow Alex and his Del Boy coat just one more time.

I am delighted to see that National Transplant week has gone well but it has raised a couple of ideas that I'm not quite sure about.

First up is a law that will stop relatives vetoing the wishes of the dead person and refusing to let organs be taken. Although I agree in principle with this I think passing a law to deal with the problem is a bit heavy handed. Wouldn't it be better to send a form to everyone who signs up asking they get two relatives to sign to say they are happy with the decision and will abide by it. Far more friendly and enables relatives to make the decision without all the emotion that goes with the passing of a loved one.

The second suggestion is that those who are organ donors get priority should they ever need an organ themselves.This one I am totally against. Places on the list have always been determined by clinical need and I really think this is how it should remain. Otherwise how soon will it be before those who can give the biggest donations are given priority and then before you know it only those with the means to pay get on the list. OK, that might be going a bit far but I'm sure you get the point.

Well I'm off, got to go and pick up a few bits and pieces from Tesco's and get the washing in before the barbecues start.

Sunday, 7 July 2013

National Transplant Week

Well it is really heating up today and as a result I'm having trouble breathing.

Yesterday I spent most of the afternoon outside in the shade and found breathing a lot easier than I thought I would. Eventually though I was chased inside by some neighbours having a barbecue. It wasn't the noise or the music that got me, but the smoke from the fire. I started to cough and wheeze and ended up having to spend an hour on oxygen just to recover. To make it worse they continued their party well past midnight forcing us to close all the window and doors at the back of the house to cut out the noise and fumes.

Of course I'd never dream of stopping someone enjoying themselves like this, though I despise barbecues with a passion, but when it goes on past midnight then I get obsessed with water hoses and a large mallet. So after being kept awake until at least two I feel less than happy this morning, despite sleeping in until almost nine. I just hope they don't plan to do the same again tonight as I've got to get up at six tomorrow for work.

Neighbours aside it was a lovely day yesterday and, until they started, very quite with just the birdsong for company.Today promises to be just as nice though there is a bit of cloud overhead at the moment so not quite as sunny as it could be. I'm hoping it will clear by late afternoon so I can sit out for an hour to two after the tennis.

Well today is the day that history could be made. Murray has beaten Djockovic before and, as the semi final proved, he is not invincible. I suspect we are in for a very long five set match with each man matching the other point to point. And no I am not going to predict a winner.

Tomorrow National Transplant week starts with the aim of getting more people to sign up for organ donation and to educate people what organ donation actually means. Hopefully it will quell some of the fears and dismiss some of the myths surrounding transplantation. I still cannot believe people still buy the myth that if they are in an accident and have signed the organ donation list they will not be given the same treatment to save their lives as someone who has not signed the donor list. I have no idea where this belief comes from but it couldn't be further from the truth. For a start medics in accident and emergency would have no idea whether you were on the transplant list or not. Also doctors would get struck off if they didn't try their hardest to save every life. No one seems to have thought that through.

So look out for the articles and programmes that will be scattered throughout the media this week. And if you and your loved ones haven't already done so please sign up. If you are prepared to take an organ you should be prepared to give. I've signed up, as have my family, friends and colleagues, please do the same.

In the news, Abu Qatada has left the country, after years of legal process and millions of taxpayers money. All I can hope is that his parasitic family follows him very, very soon.

There is a pile of ironing waiting with my name on it, I have to do it this morning while the front of the house is still in shade and relatively cool. Also it will give me something to do while waiting for the big event.

Next blog Wednesday

Saturday, 6 July 2013

The Heat Is On

It is shaping up to be the hottest day of the year and, while I enjoy a bit of sun as much as anyone else, my lungs hate it. My plan for the day is to sit in the shade on the decking with a good book and a jug of iced tea and just do nothing. I have a pile of ironing but that will be done first thing in the morning tomorrow before the heat really gets going.

Yesterday I had a good excuse to sit in a dark living room as I watched over seven hours of nail biting tennis. Djockovic came through in the end but it was nice to see him having to fight for it for a change. The match had a lovely atmosphere too which is more than can be said for Murray's. His opponent was bad tempered Pole Janovich and to say he darkened the day would be an understatement. He constantly whined about the roof not being on and gave angry displays when things were not going his way. At one point he bashed the net with his racket earning himself boos form the crowd.

Eventually he got his wish and the roof went on but it did him not good at all and Murray, angry at the disruption, took his disgust out in a forceful fourth set and won convincingly. So it is to be a Djockovic/Murray final and is going to be yet another edge of the seat marathon. At least I hope so.

I did find time to make a lovely refreshing smoothie though. I'd been to Tesco's and bought loads of fruit and once home realised there was no way we would be able to eat it all before it started to go off. The recipe for my latest creation is below and makes around a litre depending on the amount of apple juice you add. This is very good for those of us on diuretics as it has a high potassium count.

Hazel's Fruit Smoothie.

3 large bananas, I prefer to use spotty or brown bananas as they are softer and easier to blend.
1 ripe peach
12 - 15 fresh strawberries depending on size.
Apple juice

Break up the bananas and take the stone out of the peach leaving the skin on. Hull the strawberries and add to the blender. Pour in enough apple juice to fill the blender to the quarter mark, approx 1/4 of a pint, for a thick creamy smoothie. If you prefer a more liquid smoothie pour enough juice to fill blender half way, approx 1/2 pint. Blend on pulse until all the ingredients are finely chopped then blend on high until a smooth consistency is reached. You can keep this in the fridge for up to twenty four hours. This mixture also makes great ice lollies but add a little lemon juice to stop it turning brown. Enjoy!

Well I have a lounger waiting for me and lunch to prepare, I'm doing a very simple pasta with a side salad. Then I will actually be a lady of leisure for a few hours. The heat and my dodgy, bloody lungs will ensure I can't do anything else.

Enjoy this lovely weather and keep safe. Remember, Slip, Slap, Slop.

Friday, 5 July 2013

Holding Out For A Hero

One little birdy
Well today is Murray and Wimbledon day. I went out early to do my shopping ready for the big event. I've stocked up on strawberries, cherries, cream and Tangtastics and am all set for a marathon afternoon. After Wednesday's effort I'm sure it will be one of two things. A quick three setter or another edge of the seat, fight to the death event. However it just would not be Wimbledon without all the aggravation and I'm really looking forward to it.

I found the book! At long last! I found it in a bargain basket of books in Milton Keynes going for half price so I snapped it up. Now I can get on with the series and relax, well until I need book number eight that is.

While up at the shopping center we popped into Burger King for a quick lunch and were soon joined by two cheeky chaps looking for a free meal. These two young birds were obviously not at all scared of humans and happily hopped around picking up crumbs from both floor and table. I managed to get a couple of shots before they were spotted by a member of staff and shooed out.

And his mate

My chest is tighter today but that is not surprising as the temperature is beginning to rise. As anyone with heart or lung problems will know, heat really affects me and causes me to retain water and swell up. So just when I was getting to grips with all that extra fluid it's back again. At least for the next few days I don't have to do anything except sit and, despite the discomfort, I will be spending time outside because, just like all Brits, I make the most of the sun during the short time it's with us.

Well short and sweet today I'm afraid. I've got to get lunch, we are eating outside today, and then I will relax on the decking for a little while before hiding in the cool of the living room and getting all hot and bothered watching Murray.

Thursday, 4 July 2013

Behind Every Legend.......

What a match! What a brilliant match! I just could not believe it and was on the edge of my seat for most of the time. So convinced was I that Murray was going out I nearly gave up after the second set but am so pleased I stuck with it. I hope Friday's semi final is a little more relaxed but somehow I doubt it.

Apart from nearly wrecking my heart rhythm watching the tennis, yesterday turned out to be a very lazy, relaxed day. Laurence went home after lunch, having stay for two nights, which was lovely and as I was still quite tired from Tuesday I just stayed on the settee and relaxed.

My chest continues to improve. My cough came back a little last night but I'm bringing up clear water so that is an improvement. My chest is no longer sore and I can breath quite deeply. I'm still very breathless on walking but it is improving too and my toilet trips are slowing down. I'm taking that as a sign that the water is finally reducing. I haven't weighed myself yet but my flatter belly and thinner legs are a testament to the weight that has come off. Of course it wasn't really weight anyway, just a build up of water in my system but it is still disheartening. The stiffness I was having has all but gone from my shoulder but the wrist and fingers on my left hand are still suffering a bit.

Today we are going up to MK again, just for a walk around really as I don't want to spend all day indoors. The weather isn't exactly sitting out in the sun material but according to the papers that is on the way from tomorrow. I'm so fed up with trying to track down that book I'm after to continue a series I'm going into Waterstones to see whether they have it. After all if I've got a weekend of sitting in the garden coming up I need something to read. I finished my latest book last night and really want to get on with this series as the first book was so good. If all else fails I'll just have to read something else and trawl Amazon, whom I absolutely hate buying from.

The Apprentice Watch

There is no Apprentice watch today as I promised my brother I would not give the game away until he's caught up.  I will be doing the double next week instead, John and Sue you've been warned.

In the news three stories have caught my attention.

Firstly there is the fabulously brave and forward thinking move by the Welsh Assembly to choose an 'opt out' system for organ donation. This will presume every one living in Wales for twelve months or more has agreed to give their organs after death unless they specifically make their objects clear by filling in a form. Although good news overall it is not due to be implemented until 2015 so which ever way you look at it too late for me.

Of course there are the vocal objectors who think it is morally wrong or that people will be allowed to die for their organs. As to the second objection I think it is all nonsense. Doctors have a moral and ethical duty to save life wherever possible and I think it is awful to accuse doctors of extinguishing one life deliberately to save someone else.

For the moral objectors I have two questions. Would your objections stay as strong if you or one of your family needed a transplant? I suspect not. And secondly if God hadn't meant this to happen, why did he give us the intelligence to improve medicine in this way? I'm not against anyones religious beliefs but sometimes I think there are double standards going on.

The change in law doesn't mean every organ from every body will be harvested. It also doesn't mean there is going to be a flood of seriously injured or ill patients having their deaths hastened along either. The increase in donors using this scheme is likely to be only 25% at best. A tiny rise when you consider how many need a transplant. According to the paper around 10,000 people are waiting for various transplants in the UK, the likely increase in transplant operations is fifteen, not fifteen per cent, just fifteen more operations. As I said, a drop in the ocean.

Nelson Mandela is still hovering on the brink of life and is, hopefully, oblivious to all that is going on around him. An unseemly row has broken out as to where the great man is going to be buried, and all before he's actually died. His grandson Mandla has been busy digging up relatives and moving them to his village in order to get Mandela's body interred there to increase tourism. The rest of the family want Mandela buried in the village of his birth, which is apparently Mandela's own wish. As a result three of Mandela's children have now been dug up and reburied twice. Talk about respecting the dead.

The bodies of the famous have always been seen as a source of profit. Just think of the medieval trade in the bones of saints. They would change hands at staggering prices. More recently hair and body parts form famous military leaders such as Napoleon are fought over, figuratively speaking, in auctions and sales. And just look at the row going on over the final resting place of Richard III, and all because wherever he ends up is where the tourists will flock.

However none of these people had to put up with people fighting over their bodies before they've even died. Nelson Mandela would turn in his grave if he knew what was going on, well when he eventually gets there. It is sad to think that someone who fought so hard for justice, respect and peace is now the cause of such acrimony. It just goes to show behind every living legend there is a family waiting to cash in and willing to go to extremes to do so. How very sad.

The final story is, by contrast, a trivial one but one that gets my back up every time I think about it.

A woman was told by a checkout cashier that she would not be served until she got off her mobile phone. Quite right too, nothing irritates me more than having someone serve me with a phone clamped to there ear so why should it be any different the other way around?

This woman instead of realising how crass and rude she was being decided to complain to Sainsburys about how rude the cashier was. I am utterly amazed at her attitude. She presumable thinks she is more important than a lowly cashier and therefore can do as she pleases. An attitude that is all to common these days.

It is not known what has happened to the cashier, I'm hoping nothing but Sainsburys saw fit to compensate this woman with a ten pound shopping voucher. Why? She was the one in the wrong and she should have been told that by the person dealing with her complaint.

Well time to get myself together and head off to the shops.Wish me luck on my book search.

Wednesday, 3 July 2013


Oh my goodness am I tired today. However it is due to a really good night out so can't really complain.

First though other matters. My cough and irritated lungs seem to be calming down. I woke up this morning feeling a lot less restricted in my breathing and have lost the really deep chesty cough I've had to put up with for the last two weeks. I'm hoping this means I'm finally on the mend and it is not just a 'good' day. I have developed another problem though, muscle pain and stiffness. This is a sure sign of to much steroid use so I'm going to have to start cutting back again. Always a flaming juggling act.

Work was fine though the mood is still very down and people are starting to fly off the handle at the slightest provocation. I really miss the lovely happy atmosphere we had before things got messed about. I wonder whether it will ever return.

A bit of excitement broke up an otherwise rather dull day. We had two fire alarms, both turned out to be false but it meant tramping down into the car park to stand in the rain on both occasions. Fortunately we got notification that the second one was a mistake before I'd left the room so that saved me a trip. The causes were someone trying to cook something and a wasp.

So back to last night and my first proper night out in over a year. I don't get out much due to problems with my meds, there seems little point in going to a restaurant when you have so little appetite, and my continual fatigue. I'm usually tucked up in bed by nine thirty each night. Therefore, as you can imagine, last night was a real treat.

My brother and his family are down from Edinburgh for a week to see the sights of London. They are staying in a hotel in Watford so we arranged to meet up for a meal. After checking out some of the restaurants in Watford we decided to stick with what we knew and booked a table at my favourite Italian restaurant, Graziano's in Dunstable.

As my brother has no car, they travelled down by train, we drove down to collect them. Peter and myself in my car and Andrew and Laurence in Laurence's car. As a result we were able to give them that unique experience, a traffic jam on the M1. This one was between junctions five and six and was caused by a multi car pile up that temporarily closed the road while police officers scurried about picking bits of car off the tarmac.

Once at the restaurant we were greeted by the owner, who is a natural comedian, and were soon perusing the menu. I really didn't need to look as I always have the mozzarella in carrozza, which is a deep-­‐fried mozzarella cheese sandwich, served on a hot fresh basil and tomato sauce and is absolutely delicious. Now this is a starter and before I fell ill I used to enjoy a main meal as well. On the last couple of occasions I've avoided the main but being a special occasion, and because I was starving, having not eaten since midday, I chose the gnocchi al pomodoro, potato pasta dumplings tossed with fresh basil, garlic & tomato sauce, which were also fabulous but too much for me so unfortunately after a couple of mouthfuls I had to admit defeat. Everyone else cleared their plates and all agreed it had been a really good meal.

If you are ever in or around Dunstable and fancy a really good meal in a small, intimate restaurant check out the website.  One word of warning though. The restaurant is situated in a basement and the only access is a steep, narrow flight of stairs. I had to be dragged up them with John pulling from the front and Laurence pushing at the rear but it was definitely worth it.

The drive back to the hotel was fast and uneventful as it was now approaching eleven. I drove as Peter had enjoyed a beer and we made it to Watford a lot quicker than we had the first time around. There was a small blip. We had to access the motorway by going through Houghton Regis because the main road through Dunstable was closed for road works. No one minded though as, having never been in this part of England before, our guests found it all very interesting. The problems occurred on the way back, well it is impossible for me to have a night out without something going wrong. Just after junction six four lanes of motorway were filtered down to one lane due to roadworks and you can imagine the chaos that caused. Even at that late hour traffic was backing up really badly. The overhead signs keep warning us of 'workforce in road' but in the miles of jam and then single lane traffic we didn't see one person working anywhere. How infuriating is it when they do that!

I finally fell into bed tired, full and happy around midnight. Fortunately I have today and tomorrow off so I was able to sleep in this morning.

So today is going to be a rest day, fortunate really because Murray is playing in the quarter finals at Wimbledon this afternoon. A perfect excuse to sit and do absolutely nothing for a couple of hours. Before that however, I have three hungry men to feed.