Friday, 31 January 2014

Aberystwyth Versus Nature Second Round.

The healthy me is gradually emerging from the shadows. Instead of waking up this morning hacking like a sixty a day smoker, I gave a couple of light coughs to clear my airways and that was that. Brilliant! I'm not stupid and I know I'm still recovering from a very nasty infection but I'm feeling more like me at last.

To celebrate this change of events I'm accompanying Peter to the shops later to get some essential supplies. I have been told that I'm going to be wrapped up warmly, that I must not touch anything and that we will be a quick as possible. It's a week since I left the house, well except the quick trip to the doctor's on Tuesday, so I'm quite looking forward to it. I do worry about catching things when out and about at this time of year but I have to leave the house at some point. I'm still on antibiotics so I'm protected somewhat there so now is as good a time as any to test the waters.

I had a bit of excitement yesterday. Someone put a bid in for one of my items, and there is still five days to go with over fifty people watching. I'm now more hopeful of getting further bids nearer the end date. At least now I will have some money to open my 'post transplant holiday fund' with. It may not be much but it is a start. The frustrating thing is I'll be in work when the auction ends so I'll miss out on all the excitement. I've put Peter in charge of watching and posting the items off for me afterwards. Next time I'll time the auction to finish on one of my days off.

I also had some good news. Andrew is starting to get his results back and so far he's passed everything, including the exam he was least confident about. Very good news as he has interviews coming up. Next week is the start of his five week placement so he's coming home for the weekend to prepare. This usually involves taking over my kitchen to make large amounts of pasta and curry. I am fine with this provided he clears up after himself.

In the news I'm delighted to read that Michael Schumacher is responding to simple commands and has even blinked during the wake up process. Although this is excellent news the doctors are still urging caution as he has a very long way to go yet. However it is a small step in the right direction and every small step gives more hope.

Last night I watched as Amanda Knox and Raffaele Sollecito were once again found guilty of the murder of Meredith Kercher. They were even given harder sentences, 28 years and six months and 25 years respectively. What a complete shambles this has turned out to be. As a result of incompetence or awful misjudgement, we will never know which, this pair were found guilty, then not guilty and then guilty again. Of course neither were at the new trial. Knox has fled back to the safety of the USA while Sollecito was caught trying to cross the border into Slovenia just hours after the verdict.

The people I feel really sorry for are Meredith's family. They have been through hell and back trying to get justice and closure and it is now doubtful they will get either. Things are not helped by the two murderers attitudes (I'll call them that as this is what they are at this moment in time). Neither have come across as likable people. Both have shown breath taking arrogance and neither, as far as I know, have ever shown the slightest sympathy for Meredith or her family. The first thing Knox said on hearing the verdict was that she was 'a fugitive' and the ruling was 'deeply unjust' making herself out to be the victim here. Although we can never prove beyond reasonable doubt that they did actually kill Meredith this unpleasant pair have condemned themselves by their own actions. If not guilty, why run?

My home town of Aberystwyth is busy bracing itself for another onslaught by mother nature. Only weeks after the promenade was all but destroyed by high tides and strong winds another storm is approaching, this one predicted to be just as bad, if not worse than last time. The university has evacuated hundreds of students from it's sea front accommodation and even paid travel fares so most can return home for the weekend. Windows have been boarded up and sandbags dumped in doorways. The council say they are better prepared this time around. However this is the same council that has just spent thousands on new 'Victorian style' road signs. Mysteriously they think the addition of these signs is going to improve Aberystwyth's attractiveness to tourists. Well I don't know about you but I've never visited anywhere because of its road signs. I don't know anyone else who has either.

What does attract me is adequate, cheap parking, something to see, something to do and good food. What makes Aberystwyth special is it's sea front and shouldn't the money be spent on protecting and repairing this asset rather than replacing perfectly adequate road signs that 80% of people never look at anyway?

While writing this I have received my clinic letter from Papworth. One paragraph got us both in hysterics.

'Hazel has been on the transplant waiting list for approximately one year. At the moment she has not had any false alarms however hopefully this will change in the near future.'

Do you think they really mean what they've said? Lol!

Thursday, 30 January 2014

Come Back Helios, All Is Forgiven.




Today is one of those days where it never really gets light. It's dark, damp and miserable. Oh for a glimmer of sun, just one tiny sliver for say, half an hour, would do. Just to remind us what it feels like.

My day got started with a surprise. Peter brought me my usual tea and papers accompanied by a bacon sandwich. 'You must eat' he glowered. so I did, it was delicious and I didn't feel sick afterwards, miracle! Yes my chest infection is improving but my appetite has wained, probably because I'm not spending any energy. My cough has improved. It's still there but much better so on the whole things are looking up.

I got another surprise when I checked my Ebay auction and found I had 33 watchers. No idea whether the 'watchers' will turn into 'bidders' but at least there is interest, which is encouraging. As you know I have plans for this money so I want my items to do well.

My 365 challenge is becoming more difficult with each passing day. I'm reduced to taking pictures of saucepans now. That's the problem with being unwell, you are stuck with anything you can find inside the house. I have a feeling there are going to be a lot of Smirnoff pictures coming up. Never mind, if I'm well enough Peter is going to take me for a quick spin around Tesco's tomorrow. I better make sure I wear a hat. Last time I ventured out in my wheelchair I nearly got knocked senseless by a woman and her wire basket.

It seems yesterday's blog caused a fair amount of merriment. I had a lot of messages saying 'I've done that, and that, and that as well'. One message, sent privately, thanked me for taking the fear out of mistakes. It is all to easy to become paranoid about damaging the line or getting an infection, so it was nice to know my post had put someone more at ease, as well as entertained so many. Of course there were those, and there is always one, who did not see the funny side and called me 'irresponsible' for 'encouraging people to be careless'. That was not the intention at all. All I was trying to say is that it is OK to be human and make mistakes. Only one incident out of the many listed ended up with me having to attend hospital and that was when I split the line. Living so careful a life that accidents and mistakes didn't happen would mean no life at all as far as I'm concerned so I will continue to do what I do and will no doubt continue to catch the line on doors, etc.

Two things of note in the news today.

They are starting a very gradual process of bringing Michael Schumacher out of his medically induced coma. Hopefully this means he has a good chance of recovery but it will be days or even weeks before we will know the outcome. I would be very surprised if there is a full recovery after all this time. I'm not being unkind or gloomy just realistic. Read anything about extended coma's and the indications are not encouraging. Still we will just have to wait and see and pray that this recovery bucks the trend.

The second item was that we are only days, in theory, away from a law being passed to stop adults smoking in cars containing children.

Now while I whole heartedly back such a law I know for certain that it will be totally unenforceable. Why? Well because we don't have enough police to do so that's why. We've all read in the papers how forces across the country have been shedding officers in their hundreds. Nowadays the remaining police officers spend their time rushing from one incident to another and don't have time to casually roam around in cars looking for offenders. Just like seat belts, mobile phones or defective headlights the driver is more likely to get away with it than be caught.

The problem with bacon sandwiches is they make you thirsty. The problem with diuretics is, they make you thirsty. Add both together and I feel like I've spent the last few days crawling through the dessert without any water. So I'm off to get a long glass of something cold. Next blog tomorrow.

Wednesday, 29 January 2014

Sometimes Life Happens

Woke up this morning feeling a lot more relaxed than I did yesterday. The last few days have been an agony of indecision. Every night before bed I'd sit up wondering if I felt well enough to go into work next day. Then after deciding no I'd spend the whole of the following day wondering the same. Of course there is a huge difference between sitting around on the settee all day, or a quick trip to a shop in a wheelchair, to having too be at your best for eight hours. Now that I've been signed off the decision has been taken out of my hands and I can relax. After all if a doctor says I'm not fit to work, then I'm not fit to work, right?

The difference between an hour's trip to the supermarket in a wheelchair and working eight hours was pointed out to me by a very wise woman after I stressed out about going shopping during a period I was off sick. Her response was 'well we all have to eat. And how are you going to know if you can cope if you don't test the waters?' This has become my mantra and now I don't feel guilty if my husband takes me out to buy fruit or just a trip to get me out of the house. I don't take time off unless I'm really poorly so I'm damned if I'm going to be made to feel guilty when I do.

The other mantra I live by is the title of today's blog. I was told this on the day I was put on Flolan.

My wonderful specialist nurse, Carl, told me that although I had to be careful there would be times when life just gets in the way and when that happens the thing to do is just not panic. So today, when I slept through my alarm, and finally woke at nine, then read the papers before ambling to the bathroom for a soak and then realised I was three and a half hours late changing my cassette, I didn't panic. Thankfully I'm on a low dose so the cassette hadn't run out, I'm sure the alarm would have let me know if I did.

This is not the first time I've made a mistake and it definitely won't be the last. For those of you who are on Flolan or similar IV drug, here is a list of what I've done wrong over the last two and a half years.

1. Forgot to change cassette for a whole day.
2. Showered without covering the connector (at least once every couple of months)
3. Dangled the connector in the bath.
4. Dropped the machine in the bath. (Yes, when full of water)
5. Dropped the machine onto concrete from a great height.
6. Shut the line in a drawer, door, car door.
7. Caught and pulled the line around a door handle, chair arm and my foot.
8. Been half way through drug prep and realising I haven't got gloves on.
9. Forgot to sterilise the bottles with alcohol wipes.
10. Trod on the line more times than I care to remember.
11. Filling the cassette with buffer solution and then finding a full bottle of powdered Flolan still sitting on the desk.
12. Stabbed myself through the sterilised gloves with a needle full of Flolan. (This happens quite frequently)
13. Split the line twice, with no idea how so can't prevent it from happening again.
14 Dropped the line just as I was about to connect it to me.
15. Melted the line by accidentally shutting it in the oven door.

I could go on but it is probably getting a bit boring now. As you can see life has got in my way quite a lot. Maybe I'm unusually clumsy. Maybe it's because I refuse to change my whole lifestyle to accommodate the line. The line lives with me, I don't live with the line. Or maybe it's my subconscious way of rebelling against it. Who knows? All I know that despite frequent attempts to (unintentionally) destroy it, the machine whirls away day in, day out just keeping me alive. I should be grateful but all I want is to see the back of it as soon as possible.

Despite my vivid dream about Stacie getting her call, and the premonitions of several others who know her, nothing has happened yet. I can't help feeling though that it will and very soon.

Today I'm feeling a bit better again. The addition of another antibiotic hasn't really had time to work properly yet but I did go through the night without coughing, probably why I slept through change over time, which was a real bonus for both of us. We both feel less spaced out and more refreshed this morning. Hopefully by the weekend it will have really kicked in and my chest will feel better too.

My Ebay experience is proving fascinating. The items I have put up for sale are attracting a lot of interest and I'm getting a lot of messages with weird requests. Peter, who uses Ebay more than I do, says to stay well away as they are probably scammers. Some are obvious but others are quiet subtle. It's easy to see why so many get caught out.

In the news I was delighted to see adverts on TV last night for the Six Nations Rugby Tournament. I absolutely love rugby and of course support Wales whole heartedly. With a bit of luck they will keep the title but it's going to be hard fought.

Also in the news, practice has started heralding the approach of the Formula One racing season. Another sport I'm an avid watcher of. It hasn't been a good start. Mercedes crashed, Red Bull had unspecified problems and the McLaren's wouldn't start. Let's hope that isn't an omen.

So lots to look forward to over the coming weeks and months.

On the downside Michael Schumacher is still in a coma and hope continues to fade. I notice the Mclaren cars had 'keep fighting Michael' on the side pods. I suspect that's a sentiment shared by everyone who loves F1.





Tuesday, 28 January 2014

Looking For Inspiration

I'm off to the doctor's in about an hour so just time to write a quick blog.

The good news is that my chest feels a bit better today. It's not so heavy but it still rattles when I cough and I'm shattered as I keep waking up at night to cough. Poor Peter is pretty shattered too but won't sleep in the spare room in case I need him in the night.

During my brief sleeping periods last night I had a very vivid dream. I dreamt that Stacie had got her call and this time it was for real, Stacie has already had two false alarms. Now this is unusual as I usually dream about me getting the call. I'm hoping this is a good omen for Stacie as at a twenty one month wait I think it's time something happened for her.

Yesterday I have to say I wasted the day in front of the TV. I started out with good intentions, set my board up, stretched my paper etc, but when I sat down my mind went blank and I was devoid of inspiration. Just typical! For a year I've been thinking I should get some paints to give me something to do when off sick and the minute I get a chance to do just that, I can't think of anything to paint. Ah well, inspiration will come and the paints will be there waiting for me.

Being bored I found myself channel hopping hoping to find a good film. Yes I know we have hundreds of DVD's but the trouble I have is never being able to decide what to watch, and by the time I have I don't have enough time to watch it, but I digress. It was while switching through the channels that a thought struck me. I thought I was the worlds biggest soap and reality TV watcher but it appears I'm not even close. Most channels had reruns of soaps or things like Celebrity Big Brother running and I realised I was actually quite picky about what I watch. I watch, on a regular basis, Eastenders, Neighbours, Casualty, Holby City, Strictly Come Dancing, The Apprentice and I'm A Celebrity Get Me Out Of Here. sounds a lot but when you think of all the programmes I don't watch such as Celebrity BB, Splash, The Voice, Home and Away, Coronation Street etc, etc I'm actually not as bad as I thought. Of course when I can fill my evenings with long walks, trips to the theatre or a couple of hours in the pool or gym I suspect my viewing habits will alter quite drastically. For now though I'm not going to feel guilty about what I watch. Sometimes watching someone else having a tough time can take your mind off you own problems pretty effectively.

Something else that caught my eye was an advert for a antibacterial washing powder. The voice over wasn't messing about and struck straight away with dire warnings about keeping kids safe etc, etc. Yet another product to kill bacteria indiscriminately good or bad.

Now I'm not against antibacterial products. I use a spray in the kitchen and I use wipes in work and on the trolley handles in supermarkets. These I see as sensible precautions as picking up a bug, especially a tummy bug, could take me off the transplant list for a few days or weeks. I shall be keeping up this routine even after transplant as I know I will still be at risk, especially in the early stages. I used a bleach solution on my floors, as with cats you never know what they've walked in, the same reason I use the spray on my kitchen work tops, and also down the loos but that is where my germ killing spree ends.

What people don't realise is the more germs they try to wipe out the bigger risk they are putting themselves, and their kids, in. Every child needs to make contact with dirt and germs etc in order to build up immunity. And these antibacterials don't discriminate between good bacteria and bad bacteria, they just wipe out everything. This is why we have so many people with allergies these days for heaven sake. Now we are supposed to disinfect our clothing too? Don't the silly people who buy these products realise the clothes become unsterile the minute they leave the washing machine? Give me strength!

Right time to try and get some enthusiasm going and get the paints out.

P.S. Doctor says there is still a lot of liquid in my lungs. More antibiotics have been prescribed and I've been signed off work for a week to 'rest'. Do I feel guilty about this? No! For once I do not.

Monday, 27 January 2014

Grounded Again!

As you can tell from the fact I'm posting a blog on a Monday, I haven't improved.

Despite my best efforts it looks as though this infection is going to take it's own sweet time about going. To be perfectly honest I'm not as cut up about it as I thought I'd be. It's been quiet some time since I've had any serious time off sick so guilt doesn't even enter into it. I've made an appointment to see the doctor tomorrow morning, even though I still have two days of antibiotics left. Experience indicates that if I don't show any signs of improvement within five days I'm going to need something stronger. As this hasn't happened for as good few months I suppose I'm overdue.

So what to do with myself while I wait for improvement? Well I started the day by putting a few items on ebay. They've been hanging around the house for years and haven't been used. Mainly because they were bought on a whim, so why keep them? If I haven't used them yet I'm not going too. Any money I make is going into a new savings account and is going to be my holiday/Australia fund. I've promised myself that as soon as I get the go ahead to fly post transplant Peter and I are going for a long holiday in Italy. And after we've done that an even longer one in Australia. I've made a pact with Jenny that I'll go to Australia in 2016. That gives me two years to have the transplant and recover. It also gives me two years to save up for it, I don't want the time spoilt by worrying whether we can afford it.

This afternoon I'm getting the paints out. It's something I enjoy and can do no matter how ill I'm feeling. I wonder whether they will let me take them into hospital after my transplant? Isn't it strange that I'm more worried about keeping myself busy post transplant than about the transplant itself. I guess I'm so focused on the life I hope to have afterwards I've almost completely forgotten what it's going to take to get there. Maybe that's just as well.

I spoke to Laurence yesterday and apparently scumbag is claiming for injury but not for damage to his vehicle. Naturally this has left Laurence and his insurance company completely bemused. Laurence seems cheerful enough about it though. He's not happy about having a claim made against him but he's pretty confident of winning.


Andrew's gone back to uni and is very excited about his up coming placement. He's always been happier learning by action rather than book work, though he understands he needs one before he can do the other.

Well here's hoping I get sorted at the doctor's tomorrow. I'll let you know how I get on.

Sunday, 26 January 2014

The Rich Pattern of Life With PH.

Well yesterday's little foray out in the car didn't quite go as planned.

I decided against taking my paints, it was too cold to sit for very long with the heater off, and decided to rely on my camera instead. First off Andrew wanted to get supplies in for his upcoming placement. Being a sensible child he cooks a mass of pasta with tomato sauce, divides it into portions and then freezes them so he can stick them in the microwave after a long shift. He does the same with a curry so he does have a bit of variety. He also makes up bagels so he can have something quick to eat on shift. He usually fills them with salad, ham and cheese. So it was off to Costco to buy the said pasta, tinned tomatoes, bagals et al.

Rather than sit shivering in the car my scooter was assembled and I was persuaded to join Andrew and Peter, who was after a milk frother, into the shop. Despite not feeling up to the mark I was quite glad I went as I spotted something very useful. A set of three soup mugs. These mugs can be filled with soup, stew or anything else you like, and frozen. Then if you fancy a quick snack you can just stick them in the microwave. You don't even have to open the lid as there is a vent you can open to let out the steam. It means I'll be able to transport my lunch to work, let it defrost in my locker and then microwave it without having to clean up a bowl or the microwave afterwards. Brilliant! Less risk of catching any bugs this way too.

Coming out of the shop it had started to rain and the sky was ominously black. Driving towards the motorway, we'd given up on finding a nice landscape to take picture of, I saw a flash of light. 'It's a storm', I said and was roundly dismissed as 'seeing things' until it happened again, and again. By the time we got to the M1 it was flashing every few seconds and the rain was coming down in sheets, that's when it wasn't battering us as hail.  We parked up on the drive and stayed put as the storm suddenly intensified, the force of the rain and wind rocking the car. Peter got out first and made it indoors. He then phoned me to tell me to stay where I was as the ground was covered in hail and he was worried about me slipping. I waited for a while and then during a lull took my chance. I still ended up soaked but at least I didn't fall. Andrew came next and then we made a cup of tea and dried ourselves off before fetching the shopping in. I was wrapped in a blanket and sat on the settee to keep warm until the heating kicked in and watched as the boys brought the shopping in and stored it away.

So not the uplifting experience I'd hoped for and certainly not one I wish to repeat in a hurry. Don't get me wrong I love storms but only when I'm safe, warm and dry indoors watching from a window.

As we had nothing else on, and I was feeling a little tired from my trip out, we decided to huddle on the settee for film night. The film of choice was Life of Pi. Oh my goodness what a film! It's such a long time since a film has moved me so much and I burst into tears when I thought the tiger was going to die. That is something that's going to played again and again.

So how am I today. Well truth be told not that much better. I won't be in work tomorrow instead I'll be high tailing it back to the doctor's for another appointment as, despite the improvement yesterday, I'm not feeling much better. I don't have a fever, which is good, and I'm not particularly breathless, also good. However I feel like I'm carrying a lead weight around in my chest and that's not so good. Oh well, all part of the rich pattern of life with PH I guess.

At least I'm not going to have to do anything in the way of cooking today. Last night, with the help of Peter and Andrew, I put together a cawl in the slow cooker and set it on a timer. I've made enough so that if I don't get any better we at least will have warm nourishing food to eat over the next few days. I'll potion what's left and keep it in the fridge overnight, then freeze it if it's not needed.

Right time to go and make another hot drink, it's the only thing that seems to sooth my cough, and I might just steam while I'm at it. Anything is worth a go at this stage.

Saturday, 25 January 2014

Dirty Rotten Scoundrel

Following the trip out the the hospital in the morning I spent a very restful afternoon camped out on the sofa with loads of fruit and lots to drink. The result this morning is a still poorly Hazel but a less poorly one. It may be the re-hydration or the antibiotics kicking in, thought it's a bit soon, or both as I feel less light headed today but my chest feels like I'm harbouring a bag of coal in there.

As is required I rang Papworth to inform them I was on antibiotics. This is routine when you are on the  transplant list, you have to let them know when you are ill and what extra meds you have. This is because some meds will mean temporary suspension from the list as they interfere with the meds you get during and after transplant. Fortunately the antibiotics were not on their list of 'remove' and as I wasn't given any steroids either I will still be called should my luck change. I also contacted the Brompton but they haven't got back to me yet. I know that Friday's is a clinic day so I'll probably get something back on Monday. After all they prescribed the extra diuretics, so they need to know what my GP said. On reflection I reckon I could have coped with the low blood pressure or chest infection individually but together they just delivered a knock out blow.

So what's in store today? Well that really depends on the weather.

If it is nice Peter wants to take me out on a little drive. He knows how fed up I get sitting at home and I've been a little down lately so a spin in the car will take my mind off things. If it's raining then I'm going to get my brushes out. Having not painted in a long time I suddenly missed it when I didn't get the chance last weekend. I might take my sketch book out with me and maybe we can park up somewhere pretty and I can make a start on my next painting. That depends on how warm it is though, I cannot risk getting too cold with a chest infection.

Andrew is back for the weekend and in a good mood. All his exams are over and he only has one week of classroom teaching left before five weeks on placement. He has his interview with the London Ambulance Service next Wednesday so he's in for a busy time. However I think he's going to have more luck with East of England service as it said on the news last night they are so desperate for paramedics they are going to be training their own. The interview for that is in March.



Laurence had some bad news this week. Last Sept/Oct he had a slight shunt with a white van man. There was no damage to either vehicle, Laurence has pictures to prove it. Details were exchanged and they went on their merry way. Now, out of the blue, the other bloke is claiming for all sorts of injuries. The scumbag! I'm guessing he left it so long in the hope Laurence would delete the pictures but he's out of luck. We advised Laurence keep the pictures for at least a year just in case, lucky we did. There is no way the bloke could have got all those injuries when no damage occurred to his vehicle. Laurence's insurance company agrees and is contesting with vigour. Hopefully the bloke will back down once he realises the pictures still exist but I rather doubt it. I can see this going to court. I've no doubt Laurence will win but it's still going to be a pain in the bum and a worry while it's all going on. As I've already said, utter scum.

Well time to think about lunch. Although my appetite is down at the moment I am still able to eat so I'm making all my favourite dishes to keep my interest up. Update tomorrow.


Friday, 24 January 2014

Hitting The Deck

To say it's been an interesting week would be a bit of an understatement.

Monday, Tuesday and most of Wednesday it was the same old, same old. Get up, go to work, go home, watch a bit of TV, go to bed. Only on Wednesday night I was thrown a little bit of a curved ball.

I'd watched some TV and got up to make a hot chocolate before bed. Peter was out so I'd planned a really early night with my drink, a good book and the cat for company. As I made my way to the kitchen, only a short walk across the hall from the living room, I became very disorientated and could feel myself falling. I grabbed what I could to break my fall and succeeded in tipping over my sharps bin, a chair and the bucket and mop before I hit the floor. This slowed me down so I escaped with a bruised knee and hip and avoided banging my head. I lay there for a short while, well to be truthful I'm not sure how long, and then sat up to take stock. My first fear was that I'd had a stroke. People on warfarin can have bleeds in the brain if the blood become too thin. However I could see, hear and talk ok and my limbs moved properly, I tried to get up and was overcome by terrible nausea so I crawled as quickly as I could to the downstairs loo. I felt terrible and frightened. I was on l own and my biggest fear had come true.

Luckily I had my phone in my joggers pocket so called Peter. I told him I'd had a 'bit of a turn' and was going to bed early. He offered to come home but I said no I would call him if I felt worse or it happened again. I made my way gingerly upstairs and after washing and cleaning my teeth began to feel better. Once in bed I felt terribly tired so turned off the light and off I went.

Thursday morning I woke up more or less feeling better. I grabbed a banana, had a cuppa and headed for work. By break I was feeling a little light headed again so bought a bacon roll from the canteen. I couldn't eat it, after a few mouthfuls I wrapped up what was left and threw it away. Suddenly I felt awful. I must have looked bad too as soon after returning to my desk I was ordered home. I didn't argue and once home headed for bed. I spent the afternoon dozing and watching tv. I couldn't get warm and I knew I had to see someone.

I was a little shocked at the result. I had a chest infection, which I'd already suspected given that my coughing had got worse. What I didn't expect to be told was that my blood pressure was very low. It seems my extra diuretic tablet was being more effective than expected as a result I was slightly dehydrated and my blood pressure had dropped. Both conditions easily remedied by drinking more and stopping the tablets for a while. At least it wasn't anything serious but I was sent for blood tests and an x ray today just to be sure. Fortunately I'm at the end of the intensive treatment and from now on I should only take an extra tablet every second or third day to keep thing in check. I think I might go every third day for now and keep an eye on things.

So this morning I found myself sitting waiting for bloods yet again. However this morning was different because despite feeling and looking dreadful someone decided to try and pick me up. I was playing on my phone when something caught my eye. Like a muppet I looked up and there was this bloke waving at me. He was quite tall, not bad looking, bearded and aged about thirty. I didn't recognised him so smiled politely and went back to my game. Of course sometimes smiling at someone is fatal as they think they are in with a chance. I glanced up to find him watching me intently and smiled and waved again. This time my eyes lingered a bit longer as I was worried it was someone I knew and I was being incredibly rude by ignoring them. I didn't know him but he clearly took my scrutiny as a 'come on' because the next thing I knew he was scuttling towards a chair that had just become vacant next to me.

Thankfully I was called just as he sat down so I thought I was home free until he disappeared into the cubicle next to me. Blood done I gathered my things and scuttled to the door. As I went through I saw him making determined strides towards me so I ran, yes you did read right, I ran down the corridor and slipped into the ladies. I phoned Peter who was waiting outside in the car and explained the situation. Typical man, he thought it was funny. I arranged to meet him as close to the hospital as possible and then gingerly stuck my head out into the corridor and checked both ways before walking as fast as I could to the pick up point. I almost collapsed into the car seat just as my admirer swung around the corner. I pointed him out, between gasps of breathe, hoping that Peter would get all manly and territorial but all he said was, 'oh I thought you were talking about an old boy'.

We arrived home, had a light lunch, my appetite is a little better today, and I plan to spend the rest of the day with my feet up in front of the TV. I might try some painting later if I feel up to it. Right now all I really want is for the antibiotics to kick in so I can start feeling normal again.

In the news I've been following, with some interest, the latest exploits of 'soon to be ex' teenage pop idol Justine Bieber. In fact I've been so interested I'm in danger of being classed as a Biliber, Gob forbid.

So not content with upsetting fans, spitting, swearing, turning up late for concerts he now has to get himself arrested for racing his car while high on various substances. This is yet another classic case of someone being to rich and to famous far too young. Bieber clearly thinks he is above the lawn and despite the obsessive devotion of his fans I'm betting there are a fair few beginning to think twice. I'm also willing to bet there will be even more parents having nightmares about the example he's setting and trying to work out how to avoid accompanying their little angels to the next concert. It is almost like watching Michael Jackson unravelling all over again with one crucial difference Jackson had talent and his death left a void in the pop world. One Bieber will never be big enough to fill, especially as he seems so intent on destroying his own career.

I've included some 365 challenge photos in this blog. Hope you like them.

Sunday, 19 January 2014

A Sleepy Sunday and a Stir Fry

Panic ensured in the kitchen last night as I was preparing the marinade for today's ginger beef stir fry. I thought I had another bottle of soy sauce hidden away but I didn't. I usually slosh a good three or four tablespoons over the meat but I had only one, if that. What to do, what to do? Well I tackled the problem by swishing a small amount of water around the bottle and adding it and some extra ginger to the mix. Hopefully it will be fine and once again I realise I must make lists.


Having been told I no longer need to stuff myself I'm feeling a lot more relaxed and happy about what I eat.

Over the last few weeks I've been eating fatty greasy foods in an attempt to gain weight and I've really suffered from it. I feel sluggish and I've been having terrible indigestion so I've decided to stop. I'm going back to my salads and fruit but I will still incorporate some fatty stuff in on a daily basis. So I'll still have the occasional bacon butty and I will indulge in chips, cakes, crisps and curry but I won't go mad. If my weight starts to drop I'll have a week back on the unhealthy stuff.

Last night I watched two programmes I don't usually bother with.

The first was Splash. This is filmed in Luton, not a million miles from me, and I've always loved watching competitive diving so I thought I'd give it a go. It was fascinating and you did tend to watch with a lump in your throat, well these are celebrities and not professional divers. You just know that at some point something is bound to go wrong and that is why these sorts of shows are so popular. This is why we watch motor racing etc, etc. Yes we like to fool ourselves that it's because we support this driver or that driver but really we all want to see the crash.

However I digress. The one thing it did for me was awaken my craving for a swimming. Yes you can go swimming with a line and pump but it requires things like special bags and dry suits. Expensive and cumbersome and by the time I've wriggled my way into them I'd be too shattered to get in the water anyway. Beside reality dictates that I'd be unable to do anything more than flutter around in the shallow end. Breathing is hard enough without having to shift the weight of the water as well. So that's another thing on my 'to do' list. I think I might watch splash again though.

The programme I definitely will not be watching again is Celebrity Big Brother. What a group of deeply unpleasant people. I watched for a full ten minutes and was appalled by what I saw. Half of them I didn't know anyway. Yuk! Deeply disturbing and not worth my time. I turned it off and put on a James Bond film instead.

This morning started in my favourite way. A lie in then a lazy breakfast in bed with the papers followed by a long bath with lots of smelly stuff. The only 'must do' today is the ironing, which I will do while catching up on Silent Witness, it's good but not the same without Leo, or Casualty. Andrew's going back to uni tonight and Peter is out so I'll have a couple of hours this evening to myself and I am distraught because no more Sherlock. I feel an Only Fools fest coming on. There is a bottle of red wine open in the kitchen so I might just have a sniff of that to.

Tomorrow it's back to work and once again I'm not looking forward to it but I've worked out that I only have three weeks until my next leave. Yay! I will be counting down the days. Strange isn't it, how I dread going but always enjoy being there.

Sadly the body they found did turn out to be that of little Mikaeel and his mother has been arrested.

Well time to see if my marinade has worked and start prepping the veg. I know it is a bit early but I like to bring everything up to room temperature before throwing them in the wok. They cook quicker. Next blog Friday.

Saturday, 18 January 2014

Saturday Afternoon Family Time

I've had a lovely day today. All my men have been at home and we've had a good meal, a good chat and shared lots of laughter.

Smirnoff was a real pain though. Jumping up on everyone demanding cuddles and trying to steal food. He did manage to get some crisps off Laurence and a small spoonful of cannelloni from me, which he turned his nose up at.

Today I also finally hung out my bird feeders. The problem is that the weather has been so mild, not to mention wet and windy, that I kept forgetting it was winter. Still better late than never and it wasn't long before the lawn was full of little feathered friends, including a very bold robin who hopped right up to the patio doors and peered in through the glass. However the long term forecast is predicting much colder weather in February, so at least I'm in time for that.

Due to Laurence being here I haven't really had a chance to do any painting this weekend as yet. I think this might end up being an ongoing problem. I'm so busy on my days off doing the shopping, seeing the boys, going to hospital appointments and doing housework that I don't get that much 'me' time. I think the painting will come into it's own during those weeks of enforced rest when I'm ill. And of course when the days get longer and hotter I'll be able to sit in the garden in the evenings and work. When you arrive home in the dark you don't really feel like getting out the paints. However I'm hopeful of getting some time tomorrow, we will see.

Chin tickles
My poor friend Stacie is going through a bad patch at the moment and is a bit down. She's written a very moving blog post saying how she's feeling. It is well worth a read and exactly expresses how all those on the transplant list and suffering from PH feel from time to time. The link to Stacie's blog is on the right hand side of this page.

When you read the desperate words of people like Stacie it makes you wonder how some people are able to live with themselves.

You probably remember me posting a while ago about a so called friend, now decidedly ex, who announced she was going in to Papworth for transplant and turned up the next day without any explanation, totally unapologetic, after causing lots of people a whole heap of worry and lack of sleep. Well she's been at it again. Apparently a miracle has happened and she has suddenly been cured of PH as well. From death's door to cured in the space of four months without any medical intervention whatsoever. Whatever next! If only it was possible for the rest of us.

Andrew has finished his exams and is feeling pretty confident. He now only has to pass his finals in May and we'll have a fully qualified paramedic on our hands. To add to his upbeat mood no less than three ambulance services are showing interest in him. The next few months are going to be full of interviews, selection days and that probably means a lot of running around for us too but it will be worth it if he manages to walk straight out of uni into a job.

In the news I, like the rest of the country, am anxiously watching the news for updates on missing toddler Mikaeel. Unfortunately it seems a body has been found and the mother arrested. Of course they are not saying it is definitely him but it was found on land near her sister's house so you can draw your own conclusions there.

I have to say I am saddened by the news but not surprised. In theses cases it is almost always a family member or a close friend of the family that turns out to be the offender. Very rarely is the murder of a small child the work of a stranger.

No doubt there will be much beating of chests from friends, neighbours and social services about how they always suspected there was something 'going on'. It would not surprise me at all if the authorities, including health workers, social workers and possibly even the police, were aware of the family and had been for some time. And yet here we are again, another child dead, more 'lessons to be learned' and yet nothing is ever done. Of course this is all speculation on my part and I may be very wrong. However if I'm right then maybe it's time the wheels of bureaucracy ground a bit faster and instead of just sitting around talking about it someone actually did something to stop this happening again.

Also in the news Zara Tindale/Phillips has given birth to a baby girl, sixteenth in line to the throne no less. What a contrast to another recent royal birth. To be honest I think Zara was the lucky one, she was allowed to enjoy her pregnancy in peace. She will also be able to bring up her daughter out of the glare of the media. Sometimes it's good not to be top dog.

A statement was released from the Schumacher camp yesterday to say Michael is now stable. Let's hope he remains so and improves very soon.

Time to grab a banana and chill out in front of the TV. Well I didn't say I'd give it up altogether did I.

Friday, 17 January 2014

Operation Porker

Had my three monthly check at Papworth this morning and was full of anxiety about it. Have I put on any weight? Will my increased water retention upset anything? Am I still on the list?

The last one is really stupid because I wouldn't be going to Papworth at all if I wasn't on the the list but I do worry having not heard anything for a whole year.

My appointment was late morning and it takes about an hour to get there from my house so we left around nine thirty to allow for roadworks etc. Typically, as we had plenty of time, there were no hold ups and we arrive half an hour early. This meant I had all my tests such as bloods and x rays before seeing the consultant. My blood pressure, oxygen sats and heart rate were all fine, but I knew that from last week's results at the Brompton. Then came the dreaded weigh in. A miracle has happened!!! I put on weight and I was about to get very excited when I was told it was only a pound or half a kilo if you want it in new money.

I have to say I was despondent as I've been eating my little socks off these last few weeks. I'm not little miss popular at work as while I'm indulging in Operation Porker everyone else is on Weight Watchers. I enter the rest room with a bacon roll, bar of chocolate or plate of curry and get glared at as my colleagues plough through mountains of salad. They all understand my plight but I'm sure watching me scoffing away isn't helping with the willpower.

Having been given the good news about my weigh and everything else I was sat in the weighting room to see a consultant. Amazingly I didn't have to wait very long and I was barely half way through my magazine before I was called in. This week I was seen by Dr Parmar, who I understand is the head honcho, and I was surprised at how lovely he was. He went through all my results, those from the Brompton as well as those done in clinic, and then we came to the tricky question of my weight. I'm still lighter than I should be but I am now over the crucial eight stone marker and that's what really counts. He asked how much I'd weighed at my heaviest ever and I told him that was when I was nine months pregnant with my third son and then I'd only just tipped nine stone. He said it was time to stop stressing about my weight as it was clear from my history and my bone structure that I'm never going to be anything other than slim. The most important thing for me to do now is to maintain my weight above eight stone, get my water retention under control, and keep myself as healthy as I can. Thank heavens for that! I was convinced I was in for another lecture. Maintaining weight will be so much easier than trying to gain more.

We then got on to my waiting time. He was astonished that I hadn't been called yet as 'there was not reason for it'. I have low level antibodies but other patients with higher antibody levels have been transplanted so that is unlikely to be the reason for my long wait. Dr Parmar thought the main reason for the wait was my size. I am unusually small for an adult as far as depth and length of my rib cage goes and if they can't find organs small enough to fit that becomes a problem. However he did say that the average wait for heart/lung is eighteen to twenty four months so from his point of view I still have a way to go. We did discuss having just lungs which would mean getting organs quicker but he would only consider that as an option for me if things got critical because he feels it would be quite dangerous. He did say that they would up grade me though as my heart is showing early signs of not coping, hence the water retention, and he would like to see me transplanted while I'm still quite well. Apparently the problem with PH patients is that once heart failure takes hold you deteriorate very quickly. Dr Parmar would rather avoid that if he can.

So I came out of clinic feeling a lot more relaxed about my weight and a lot more reassured about the efforts being made to find organs.

On the way home we stopped off at Tesco in St Neot's to do our weekly shop and took advantage of the cafe there to have lunch. The food wouldn't win any Michelin stars but it was filling and tasty. We arrived home, unpacked and then I made a nice cuppa and we relaxed. My next trip is in April, Dr Parmar's parting shot was that he was sure he'd be seeing me before that. If only I had his confidence.

Those with sharp eyes may have spotted a familiar face on the TV this week.

Anglia news was in filming at my work place to get an important message across. It seems there is an urban myth going around that dialling 999 increase the battery life of a mobile phone. It doesn't, so please don't do it.

Andrew has been taking exams at university all this week and so far they seem to be going well. He has his last one today and then he'll be home for the weekend, another reason to stock up the cupboards.

Also paying a visit will be Laurence, who is coming for lunch tomorrow. I am making cannelloni, always a firm family favourite, and apple crumble.

In the news I was saddened to hear about the death of Roger Lloyd Pack. This talented actor was most famous for his role as Trigger in Only fools and Horses and Owen in The Vicar of Dibley. He was a joy to watch and I will be paying my own little tribute this weekend by dusting off a couple of DVD's and laughing myself silly.

The is also bad news form the Schumacher camp. It seems that he is not making the progress medics had hoped or expected and now there are gloomy predictions that he could be comatose for the rest of his life. If he does come around, and at the moment it is a big 'if', he will not be the same Michael Schumacher. What a terrible shame and how awful must if be for those close to him to know all this. I just hope that he manages to pull one last 'fast one' and proves them all wrong.

Right time to get myself down to my paint box and see whay I can be inspired by this week.

I've included a few of my 365 challenge photos in this blog, hope you like them.

Sunday, 12 January 2014

Painting By Numbers

Oh my gosh! Did I enjoy myself yesterday or what!

Despite saying that I was going to take things slowly, and build things up bit by bit, once I got the brush in my hand and the smell of Acrylic in my nostrils there was no stopping me.

I started off with a very rough sketch of an idea. When I say rough I really do mean rough. The lines are over laid again and again and there are a lot of smudges and excess pencil marks as I just keep going and going until I'm happy with the result. I then simplify the sketch so only the basic outline goes onto the paper, well you don't want to see loads of pencil marks coming through the paint do you. I tried to position the snake facing left and right but settled on the right as that's how I want it positioned in the final piece. I also changed the shape of the body so that it was more upright.


Then came the paint. I decided on a pea green and filled in the parts of my sketch that represented the top of the body with a light wash. I left that to dry and then added shading in a slightly darker colour and again left that to dry. The reason for letting base colours dry completely is so the detail doesn't sink in and feather. It was the detail where I came slightly unstuck. As predicted my hands shake more than they used to so occasionally my fine line would turn into a thick splodge. Unfortunately the harder I tried to control my hands the more they shook so in the end I abandoned putting in the scale detail. I will save that for the finished piece, which will take days to do.


After adding the background and walking away for a few hours I had time to assess. Well yes I can still draw, pretty accurately I'm shocked to say, but there are mistakes. The green of the snake is wrong, I want something more menacing and green just won't do. Also the blue background needs to be much, much lighter and even, almost a wash. Maybe even a different colour, a very pale beige might have been better. Having said all that I'm quiet pleased with my first piece for ten years, at least. I've included the different stages, see what you think.

Today I'm painting from life, well actually from a picture to see if I fair any better with drawing something that I can actually see with my eyes than with my brain. I will post the results of that in my next blog.



In the news it came as a great shock to me to hear that Ariel Sharon has died. Mainly because I thought he'd died years ago. Eight years in a coma? One has to wonder if the motive for keeping him alive was more to do with the fear of what his departure would cause politically at the time he had his stroke, rather than for the benefit of him or his family.

Talking of which, there is still no news from the Schumacher cap so we can only assume that there has been no significant change in Michael's condition.


Next Friday I'm off to Papworth for my three monthly check. Once again I will ask them whether I'm really on the list for transplant and once again they will say yes I am. Sometimes though you have to wonder when you've heard nothing at all for such a long time. I know my friend Stacie felt like that after she reached the one year marker but then she got two false alarms in fairly quick succession. I know false alarms are horrible, you build up all that hope and there's excitement mixed with fear, but at least they are an affirmation that you are on the list and they are looking out for you. At least when I go I'll know that I'm still fit for transplant. I received the written report from the Brompton yesterday and there were no nasties in it to say otherwise.

Kath, who had her transplant in November, made it up three flights of stairs this week and all without having to stop once for breathe. The change in her is remarkable and, although she is still having to attend hospital regularly, she has now been taken off some medications and has had others reduced. I'm so happy for her and a little bit jealous as I want this so badly now. You never know, maybe I will be writing about how I made it up three flights of steps this time next year.


Well time to think about feeding my boys. I did a beef and ale stew yesterday, which went down a treat. I'm thinking pasta today, I just haven't got to grips yet with what sauce. I feel another rummage through the cupboards coming on.



Saturday, 11 January 2014

Arguments With Hywel Harris

I now have no excuse. I have a drawing board, I have paper, I have paint.

After immersing myself in a dedicated art shop, I did try Poundland as recommended but they didn't have what I wanted, I was pleased to see that I'd come away having spent just £30. I resisted buying canvass at this stage because that is expensive and I'm still unsure of myself. So I got a cheap A4 pad and a pad of slightly more expensive gummed paper. The pad I'm going to use for sketching and experimenting with colours and techniques. The more expensive paper will be used to put ideas together. Once I have a composition that I like I'll then commit to canvass. Aside from the paper I also bought a drawing board which will perform a double duty of having something to stretch my paper on and give me something to rest my paper against when I draw. I did think of getting an easel but they were expensive and it's far too early to commit to that. I might find I give up after a couple of doodles.

Part of my 365 challenge. Got board
waiting for Peter to come out of a shop.
The temptation is to rush at it like a bull at a gate but painting takes time. It's a bit like reading a book. You don't rush through the pages to get to the end in case someone takes it off you. You read slowly, savouring the plot, thinking things through, absorbing information. It's the same with art. Yes of course you can sit down and do a painting in a day, some artists do work that way. However my approach has always been slow and steady so when I finally commit to the finished piece I am confident it will turn out exactly as I want it too. At the moment I have an image in my head of what I want my first piece to be, which is always a good thing, to have an idea. Getting it onto paper might prove to be a bit tricky because as always nothing with me is ever simple.

So the trip out was really quiet uneventful. The art shop took most of the time, I must have been rummaging for at least an hour, and yes I did want to buy it all. I was particularly drawn to the oils but they are far to expensive to experiment with as they are difficult to control. We stopped off at Tesco's on the way home and bought more fruit, I'm manic for the stuff at the moment. I bought plums, tangerines, apples, bananas and blue berries. I will be making a smoothie with the bananas and blueberries though, so maybe it's not as bad as it sounds.

Back home I found a package waiting for me from Papworth. Inside were two little pots and instructions to get my blood taken for repeat tissue typing. They like to tissue type every three months or so just to check nothing has changed, though what cataclysmic event would change your tissue type I don't know. As I have an appointment with them next week, where the tissue typing is usually done, I rang them to see if they really meant this or whether it had been an error. Thankfully it did turn out to be an error and yes I do have an appointment next week, they hadn't checked. Phew!

With that little crisis over, well not really a crisis just a reluctance to be punctured twice in one week, I went downstairs and stretched my first piece of paper over my board and left it to dry. The result this morning was perfect so at least I haven't forgotten how to do that. To be fair stretching paper was drummed into me in school by my art teacher, Hywel Harris, whom I never really got on with. I loved Renaissance art, Leonardo, Donatello, Titan, he was into more modern stuff, we clashed. Our most memorable coming together was on a trip to London, I think it was to the Tate. I remember clearly standing in front of this completely black canvass, there was a red one and a white one too, and being asked what I saw. 'Errr, nothing. It's blank.' I replied. The look I got would have floored elephants. After that I can only say our relationship deteriorated. I passed my Art 'O' level with a respectable B grade and desperately wanted to take it on to A level but I knew I couldn't do so at school so left to pursue my interest at the local Further Ed, where I came out with an A grade for art and a B grade for ceramic at A level.

As an interesting side note after he died he was buried next to my Grandmother.

Right the moment has come, time to start sketching out my visions and then, with a bit of luck, transferring them to paint. I suspect there will be a bit of swearing but at least I won't be vegitating in front of the TV munching my way through a tube of Pringles. I will post my progress in the future blogs.

Friday, 10 January 2014

Feelings

Well I had a very weird day yesterday. Several people from work said they had a 'feeling' I'd be getting my call soon, each without knowing about the others. I also got a few friends texting me saying the same. What is going on? Do they all know something I don't?

In reality the longer you've been waiting the less time you have left to wait so with each passing day I get a little bit closer to the call but I don't know how much closer I've got. I might still have years to wait but I do appreciate the positivity that is buzzing around me right now. The more positive vibes I get from everyone else the more upbeat I feel about things, so keep them coming.

Sharps bin.
We were really busy at work and time flew and before I knew it I was on my way home again. I was startled to walk out into the car park at half past four and find it was still relatively light. This buoyed my good mood even more as lighter evenings is a sure sign that spring is only just around the corner, my second favourite season of the year. It also means I have more chance of seeing suicidal cyclists on the drive home. Of course we can't get to spring without a bit of cold weather. This week we are in for ice and maybe even snow but in a way I'm looking forward to it as I'm fed up with all the wind and rain, I practically needed a boat to get into work yesterday.

Today the sun is shining and I'm off out this afternoon to take a couple of pictures and track down some paper and canvass for my paints, thanks for the tips as to where to look everyone. I will bare them in mind on my hunt. With a bit of luck I will find a really beautiful landscape that I can transfer to canvass.

The extra water tablets seem to be doing their thing and I'm spending a good deal of time on the loo. I have been reassured that this will tail off once the excess water has gone. To be fair the cough has already lessened but is still very bad first thing.

In the news Michael Schumacher is still in a coma two weeks after the skiing accident that nearly killed him, and in truth still might. We've been told that updates will only be issued if there is a change in his condition but the silence is worrying. It is a fact that the longer you are in a coma the more likely there is to be permanent damage, whether that coma is medically induced or not. Although I never liked him as a racing driver I never wished him harm and for this to happen off the track is just heart breaking. It just goes to show, danger comes when you least expect it. I have a feeling this is not going to end well.

Right I'm off to rummage through the cupboards for lunch and then its out shopping, and for once I'm really looking forward to it.

Wednesday, 8 January 2014

A Mixed Bag at the Brompton

Well I'm glad that day is over, hopefully never to be repeated.

I slept poorly on Monday night. I don't know why people say that knowing what's coming makes things easier. In my opinion it makes things harder, especially if your first experience was difficult. So I was a bit like a Zombie driving into London Tuesday morning, in appalling weather I might add. To be fair the traffic was light and we arrived before time and had no trouble parking. Of course as soon as I stepped through the hospital doors the sun came out, damn it.

Sign in a corridor at the Royal Brompton
I went up to the ward where there was a modicum of confusion because they didn't know I was coming. I showed them my letter which only seemed to create more confusion until Phil my consultant showed up and explained that I was a day patient. He looked me up and down and declared I looked 'fabulous', one of three fabulous comments I'd get before the day was out, before giving me a big hug and seating me in the day room while he went to fetch Carl.

I had a long chat with Carl who apologised profusely as the new medication was not available so I'll have to return in a couple of weeks for that. However everything else would be going ahead and first thing first my line was checked. Thankfully it is in prefect shape. There are no leaks or splits and the repair, where I spilt it about a year ago, is still holding well. The sight is clean and dry and there is no sign of infection so there was no need to interfere with it. To be fair, as I'm on the transplant list, they would do their best not to change it unless they really had too as hopefully I won't need it much longer anyway.

With no new meds and no new line I was packed off for something to eat before going on to my ECHO.

My new painting set
An ECHO, for those that don't know, is a bit like the ultrasound pregnant ladies have. The difficulty for ECHO's though is that, where in pregnancy they only have to see through skin and flesh, they also have to see through bone and in the case of us ladies get past two very obvious obstacles. With me there is a further problem. Due to my open heart surgery my sternum is deformed. In those days they were more concerned with fixing the fault than making you look pretty afterwards. The result of my op is that my sternum did not heal flat and is 'V' shaped with the left side slightly tilted and thicker than the right. This is the bain of my life as it is really difficult trying to get bra's to sit properly. The bone is also quite sensitive so ECHO's tend to be difficult for the operator and painful for me.

It was my misfortune on this occasion to be landed with a trainee. I was asked before they started and, although I won't let anyone in training and welding a needle anywhere near me, I was pretty OK with this. I now wish I'd said 'no'. How can I put this politely, he was the clumsiest person I've ever met.

First off he laid me down on the bench and whereas I'm usually told to lie on my side in, what I must say is normally a very comfortable position, he got me to lie at this weird angle. My lower half was on it's side as normal but he wanted my top half to lie slightly tilted towards my back so I was half on my side and half on my back. This was very uncomfortable and very difficult to maintain and I soon started shaking with the effort. I said I couldn't stay in that position so he let me had a short rest and then yanked me back into the contortion. He continually got his hand caught up in my line and pulled and yanked at it so hard I though he was going to pull the thing out. In the end I grabbed the line and held it down by my side to keep it out of his way. He sat on my line cutting off my drug supply and set the alarm off. And when he told me to hold my breath he forgot to tell me to breathe again so I would turn blue and the have to gasp for air before he remembered and said I could breath again. I was not impressed.

Lots of lovely bath stuff
As if that wasn't bad enough he skimmed the wand over my ribs as though he was playing the xylophone and each bump was agony. He also didn't put enough of the gel stuff on it so occasionally he'd drag my skin. After almost one and a half hours and with an extremely sore sternum he called his mentor in and explained in a panic that 'no matter how hard I pressed I couldn't see the pulmonary.. '  The mentor asked it he could have a go but battered, bruised and with a fair number of friction burns I'd had enough. The trainee was not used to seeing anyone with a Hickman line either and talked about 'foreign bodies' etc. I left ECHO with a red raw sternum, a stiff back and a cricked neck. I will remember his face and won't be letting him near me in the future.

Back on the ward I waited for the results with a feeling of doom. I always anticipate the worst when it come to ECHOs and I wasn't expecting great things of this one due to the inexperience of the person doing it. However I was in for a pleasant surprise. The pressues in the heart have gone down a little bit so despite having felt really under the weather over the last few months my PH is actually well controlled. The problem, and the reason for the constant cough and congested feel, is water. I appear to be retaining quite a bit and there is a lot of it sloshing around in areas where it shouldn't be. So my furosomide has been increased from 40mg to 80mg a day for the next two weeks. After that I can return to 40mg and just take 80 every other day. They will review this at the next clinic.

So I was finally released and headed straight to the canteen for a cuppa before we finally headed home. Of course by then it was rush hour and it was raining again so the journey was long and tedious. I spent the evening on the settee and then had a soak in the bath before bed. Partly to try and ease my aches and pains and partly to get rid of all the residual gel that had now turned into a glue type substance and kept sticking my boobs together.

I woke up very late this morning and was greeted by the delivery of my sales stuff from Lush. Delighted I ran another bath and relaxed while I finished my book. Fortunately most of the damage to my chest was temporary and apart from a bruise over my ribs and a bit of raw skin on my sternum I've faired better than I thought. My shoulder is stiff and sore from all the line pulling but the line is fine and the entry site seems OK. Of course I've still got to go back to have the new meds but at least that is all I will have to have and hopefully there will be no hiccups.

Hung on a wall at the Royal Brompton
I'm back at work tomorrow for just one day before my weekend off and then next week I'm back to normal, though hopefully with less coughing to annoy my colleagues. Unfortunately I'll have to take another day off at some point to get my new meds but that cannot be helped.

The 365 challenge is still going well, though as I'm only eight days in I should hope so. I just wish the weather would improve so I can find something a bit more riveting to take but that will come. I've included the latest pictures in this blog.

My paints have finally arrived and I'm itching to get started only what did I forget to buy? Yep paper and canvass. What a numpty! So Friday will see me hot footing it to the nearest artist suppliers to get some of both. I still can't believe I did that.

Right time for a bit of Father Brown and a nice cuppa. Next blog Friday.

Sunday, 5 January 2014

Mixed Messages

Literally everyone I know, barring one pregnant lady, is on a diet while I'm still blissfully tucking into bacon sandwiches and Lindt chocolates. After weeks of adverts telling us to eat this, that and the other, the ads are now full of dieting aids. Likewise the weekend papers are full of recipes guaranteed to reduce the intake of fat, sugar, carbohydrates etc, etc. Most of them scream 'lose 2/4/6/8 pounds per week on this fabulous tasty diet', well here's an idea, how about eating less and moving more?

Dieting aids such as soups, shakes or ready meals are notoriously expensive, mainly because they have the word 'diet' in them. Why not just eat less of your ordinary meals and eat fruit instead of chocolate? Seems simple to me and a lot cheaper. Looking at the recipes in the papers I don't wonder why most diets are abandoned within a month. The recipes all contain ingredients that you'd be hard pressed to find and take an enormous amount of time and effort, and again, expense to make.

One very, very sensible friend swears by just one thing when she wants to lose weight, soup. She makes up a batch of soup usually enough for a week and freezes it into portions. This soup is not a 'diet' soup, indeed it is usually made up of anything left over from the week before. At the moment it is turkey and ham with veg, and she has a bowl of this soup with bread for lunch every day. Of course she cuts out snacks, unless it is fruit, and has a normal dinner with the kids in the evening. It cost her nothing, works like a charm and takes up only about an hour of her time at the weekend. How simple is that?

Of course, while we are all being encouraged to lose weight and spend a lot of money doing it, we are also being bombarded by Easter egg adverts.

Aberystwyth during the storm. Picture taken by Phil Griffiths
We are not out of the first week of January yet and apparently we have to rush out and buy Cadbury's creme eggs because 'when their gone, their gone'.  How cynical is that exactly? Of course they are not going to run out. Usually you can get creme eggs well into the summer so hinting that they are extremely limited is rather dishonest don't you think? I remember when you didn't see an Easter egg until March and I have to wonder who on earth buys Easter eggs this early anyway. Don't they go off?

We are taking our Christmas tree down today. Out of everyone we know we are probably the last to do so and that is more from laziness than festive spirit.

Everyone I know feels that Christmas this year did not have a 'special' feel to it. Maybe it was the bad weather, maybe it's because of all the repeats on TV, maybe it's because I was working. Yes all those things make an impact but I think the biggest factor in losing that Christmassy feeling is that it all starts so early.

From September the mince pies, crackers and turkeys arrive in the shops, most with best before dates in November. Thus ensuring that if you did decide to buy early you'd have to go out and by the thing again closer to the date because the original purchase has gone off. January sales start before Christmas and you are constantly told 'Christmas would not be complete without ...'  Now Easter is also being destroyed. Where did it all go wrong?

The same view minus the water.
Right enough of the rant, back to my original point. I'm also on a diet, one to put more weight on and at last it appears to be working. I now weight 8st 1lb 8oz, that's exactly a stone heavier than I was this time last year. I've put on about three pounds since I last saw Papworth and with only two weeks to go before I see them again I stand a good chance of keeping it on. Hopefully they will be happier with me but I'm sure not quiet satisfied yet as my target weight is eight and a half stone.

On Tuesday I'm off to the Brompton to have my line checked, it is two and a half years since I had it put in and they want to check it's condition. I'm also having a full MOT to ensure I'm still fit for transplant and, with a bit of luck, I'll get my new drug. If you remember that was a bit up in the air just before Christmas when an administrative document had yet to be signed to allow me to have it. I haven't heard anything since so I'm assuming this is going to go down to the wire and I'll only know if I'm getting it when I arrive.

Of course I'm really looking forward to the freedom the new drug will afford me but at the same time I don't want it to make me terribly sick and cause me to lose weight again. Talk about a rock and a hard place.

The storm has taken it's toll on my poor home town of Aberystwyth and I've included a 'during' and 'before' picture of more or less the same stretch of prom. I would like to thank Phil Griffiths for the use of his picture in today's blog. If anyone from Aberystwyth has any pictures of the damage that they'd be willing to let me include in my next blog please let me know. I thank you in advance.

Today I'm copping out on the cooking and using a shop bought sauce to make a pasta bake for lunch. I'm feeling a little tired, even though I slept well, and just can't be bothered with the effort. To be fair I have been cooking solidly for almost two weeks now so a I feel I deserve a little break.

This afternoon I shall settle down and watch a really awful film while nibbling my way through the remainder of the mince pies and cheese. Well a girl has to keep her strength up.

Saturday, 4 January 2014

Challenging Times

2014 seems to be taking up where 2013 left off and I'm busy, busy, busy.

Work, as can be expected over the holiday period has been a bit frantic and I can't even relax much at home. Thankfully today is going to be a 'do nothing' day so I can recharge my batteries a bit before next week's onslaught.

I spent Monday to Friday in work and made the mistake of staying up to see the fireworks on New Year's Eve. This meant I got a maximum of four and  half hours sleep before heading into work. Surprisingly I felt fine and it was only late in the afternoon I began to feel a bit weary. Of course I couldn't go to bed early the following night because the programme I'd waited all year to see was on. Sherlock and the explanation about his death. Not that there was much of an explanation, we still don't really know how he did it. So Thursday I was shattered and more or less floated through the working day in a sleepy haze.

Thank God for Friday, or so I thought. At least it was eight when I woke up and not six but from there it was non stop. After I'd showered and read the papers we headed to Tesco's. I haven't done any shopping for a fortnight so was desperate for fresh fruit and vegetables and very little else. As usual I bought too much food for the Christmas period, we haven't even opened the Quality Street yet,  so we don't actually need anything else. The shop was manic, much worse than before Christmas, and we were glad we didn't have to get much. It was home for lunch and then off we went to Rushden.

For Christmas we'd bought Laurence one of those fake flame fires. The old fire place in his house had remained bare and empty since he moved in around two years ago. We've often talked about putting dried flowers or some sort of ornament in there just to fill the gap but nothing seemed to fit. We were a bit surprised and delighted when Laurence mentioned wanting a fire so we rushed out and got one. Of course the gift didn't come by itself and included fitting and the earliest date we could all manage was yesterday.

As usual I sat on the settee and watched as the wall was measured, drilled, spirit leveled, drilled again and finally the fire was hung. It still didn't look quiet right but that's probably because it is the only thing in the entire house that is straight and level. Being a Victoria terrace, and Victorian builders not being too bothered with straight lines, the walls are a bit wonky, as we found when Laurence moved in and we tried to put shelves up.

From Rushden it was on to Milton Keynes to pick up a few bits and pieces and then home. I changed into my old joggers and t shirt and sank onto the settee where I stayed until bedtime.

Today I woke up to a wet, windy but surprisingly mild morning. I wandered downstairs and made some tea and as Peter was still asleep turned on the news to see if there was any update on Michael Schumacher after his dreadful skiing accident. There wasn't but instead there were pictures of Aberystwyth, my home town, and the damage Friday's storm had caused. I stared with my mouth open. The prom is almost completely destroyed. The mosaic tiles are covered in sand, the metal railings are bent and twisted, ripped from their housings and great slabs of concrete and paving stones litter the road we drove along only a few months ago. In some places there is very little prom left to walk along. I have never seen such damage done by any storm, and believe me I've seen a few. On the plus side my family and friends all appear to be safe.

Here in the Bedfordshire triangle we seem to have escaped the worst of it yet again. I don't know what it is with living here but complete mayhem can be going on all around us and we get the odd tree or fence panel down. How weird is that?

The 365 challenge is going well, though as it is only the fourth day of the year it would be pretty poor if I'd already messed things up. This is going to be more challenging than I thought though, at least until I start driving too or from work in daylight. How can I put this? Subject matter is a little bit, umm, limited. Doing the challenge is going to be really easy in good weather, when I'm out and about. Even just sitting in the garden I can find something to take a picture of but in the dark or at work, well there isn't much to photograph to be honest. I've also found I need a phone with a better camera or I need to take my Nikon everywhere with me. Again easier to do out of work than in. So at the moment there is a fuzzy photo of my lunch in my locker and my mug.Things will get better I promise.