One X Viewer

The X Factor returned last night and I was quite looking forward to the usual parade of tone deaf no hopers. However it quickly became apparent that this was the Cheryl and Simon show.

They preened, they flirted, they were all over each other. Cheryl did exactly what she was expected to do. Play fight with Simon, stare wide eyed at the contestants and shed a convenient tear here and there. Simon on his part seemed more interested in Cheryl than the contestants and only occasionally acknowledged Louis and Mel B. In fact if you weren't careful you'd forget that there were two other judges, so firmly were they pushed to the sidelines. The camera only briefly rested on them when they gave their verdict, other than that it was only the wide shots that reminded us they were there. As for the contestants, well they barely got a look in and most were on screen of less than 30 seconds. Hardly time to stutter out their name. There were two exceptions, both involving Cheryl, of course. The boy who had the hots for her, was it just me or was he really creepy, much to Mel B's disgust. And the girl who had been booted out of boot camp previously. This gave Cheryl the opportunity to shed a tear and transform into 'the nations sweetheart'.

Maybe it is just me. I'm sure there will be many that absolutely loved it but I will not be watching again. At least not until Cheryl is sacked again.

So how did my cooking go. Well the walnut and date cake didn't as, after all the messing about with the tart, I couldn't be bothered. The tart is a real pain to make but tasted so delicious that it was sort of worth it. It took the best part of two hours and involved a lot of sticking things in the fridge to cool and raising things to room temperature before you even got the thing in the oven. It was nice though but I think I'll keep it for a special treat. The date and walnut loaf is still pending but I don't feel like it today so that has been put on the back burner for next weekend. Instead I had a lazy afternoon working my way through my DVD collection.

This time next week I'll be packing to go on holiday. I can't believe it has come around so quickly. It seems like ages since I booked. They say the weather is set to improve but I see no evidence of it as yet. Oh well it is a whole week away and a lot can happen in a week.

Talking of holidays Svet and Andrew returned from their road trip tired, hunger but very happy. They had a brilliant time and I've not doubt Wales will become a regular destination when Svet is over from Bulgaria (I got told off for spelling that with an 'e' in a past blog. I hope I've got it right this time). So sorry Svet.

Tomorrow is the first day of September and that means the start of my favourite season of the year is almost upon us. I love autumn. The colours, the weather and most of all the beautiful crisp mornings that make you feel really alive. I used to love walking on those mornings when the air smelt so clean and the frost crunched underfoot. All gone now of course and it looks as though I'm going to miss the experience again this year.

Of course there are a few things about autumn that I don't like. Shorter days for one. Busier roads in the morning because the school run is back on. And the shops selling Christmas stuff. Why they feel it necessary to bombard us with mince pies and turkey before we've even had Halloween is beyond me. And to be frank spoils things a bit. NOTHING even remotely Christmas related should appear in any shop until after November the 5th at the very earliest. No matter what your religion or beliefs Christmas is meant to be a very special time. It used to be that everything closed so that time could be spent with the family and relatives you only saw at that time of year. It doesn't have to be a lavish affair and no one is going to died because you forgot the brandy butter. Unfortunately the retail industry have got into our psyche and the world will end if we don't buy this cake or that toy.

This year I plan a very quiet special Christmas with just myself and the boys. We will exchange a few gifts, eat a good meal and spend the rest of the day playing games or watching films. No one will mind if I've forgotten the Brie, the fact that we are still all here to enjoy it will be the most important thing.

Wow, getting a little ahead of myself there. Let's get the next few months out of the way first. I've been feeling rather optimistic these last few days. I feel as though something good is coming my way. I know, I know, I've said all this before a million times. However it became extremely important to me that I got my Hudl loaded with my music this weekend. The last time I felt like that was in April when I just had to re pack my bag to make sure I had everything. I got the call a few weeks later. I'm hoping my internal predictor had kicked in and I'm right again. I'm probably not but I can but hope.

Time to get lunch ready for the hungry hoards. Next blog Friday.

Walnuts!

I lied when I said I had nothing to do yesterday. I'd sort of forgotten the shopping.

We went late as a result, and in the hurry I'd failed to check the larder. Big mistake as I'm trying out a couple of new recipes, and knew roughly what to get, but not the quantities. I decided that it would be better to buy too much than too little so bought two large bags of walnuts and 600ml of single cream. When I got home I found I needed 300ml of cream and 100g of walnuts. I have about a kilo.  The walnuts will keep and will no doubt get used up in my banana bread at some point. As for the cream, well I'm sure no one will object to an apple and blackberry crumble this Sunday.

Apart from that it was a quiet day. I didn't get to sit in front of the TV because I decided to transfer all my music onto my Hudl and it's a long process. I'm up to 'H' so far. I already have my music on two mp3 players but decided that for simplicity I'd get everything in one place and then I've got it one way or another. There is another benefit I've discovered too. I can use wireless headphones to listen to music from the hudl without having to carry it about. This is going to be so good when I'm cooking. At the moment I use one of the mp3 players and that means an extra wire to get hooked around door handles etc. It is so frustrating to be elbow deep in a meatloaf mixture and have your headphones pulled out. Now it won't happen, yay!

So what is it that I'm making this weekend. Well, inspired by the Great British Bake Off, I'm attempting a savoury tart with cheese ham and chives and a date and walnut loaf. I've never eaten the first and used to love the second when my mother made it as a kid. I still have about seven packets of dates from my buying frenzy last week so all I needed were the nuts. I will post pictures of my efforts tomorrow, with recipes if they turn out reasonably well.

My plans for my holiday are gathering pace and, having done some research online, we've settled on a few places we'd like to see. The Minster is obvious and there is a city walk to follow. We always do a walk on the first day for two reasons. You get to see all the sites in one go and can then decide which ones to visit in greater detail.And it also hope to get you bearings so if you get lost you have a good chance of find your way back to the car. I'm beginning to get excited now. OK, more excited.

I'm especially pleased as I'm going to meet up with a fellow PH sufferer who lives in the area. Carole and I have been facebook friends for a couple of years now but have never met. So it was with great delight that I received an offer to meet up over coffee. I cannot wait as I always like meeting people I've been chatting too online. This will make our visit very special.

With that I will say goodbye for now. I have a bag of walnuts to crush. More tomorrow.

Autumn Approaches

How depressing is it that we are hurtling towards winter and summer is pretending to be autumn. All it has done this week is rain and blow and feel cold. So cold in fact that I've dug out some winter woollies and am wandering around the house in my slipper socks instead of bare feet. This is very worrying considering I only have one week to go before my, much looked forward too, holiday. However I thoroughly enjoyed myself last year in Canterbury despite the wind and the rain, so maybe I shouldn't feel too down about it.

Seen a lot of these little fellas racing
 around the lawn this week

This week has been a bit of a downer for me. I am not really sure why. After being told how well I'm doing by the Brompton last week I was disappointed to find myself feeling a little under the weather. I've struggled with my breathing all week and have found moving around a lot more difficult. I can only put it down to the sudden change in weather as I'm certainly not ill. That's the trouble with this illness one day you are feeling buoyant because you are told there has been an improvement and the next you are sent crashing down by a change in the weather. Stupid PH!

My lovely colleagues have been brilliant though and have helped me where they can. As you know I have a special chair at work now that supports me better and allows me to feel less tired. This chair is kept in the locker room when I am not there and so has to be wheeled from there to my place of work every time I'm in. Although it is a short distance, and the chair is not heavy, the sheer physical effort of getting it from one place to another makes me very tired. Now I find I am arriving at work to find my chair has been put in the room for me and I almost always get someone offering to put it away for me. If only they knew how much these little gestures help they'd be amazed. I am so lucky to be working with such kind people.

Andrew is currently taking his first road trip in the car and is exploring the delights of Wales. His girlfriend, Svet, arrived from Bulgeria on Wednesday and they set out to Aberystwyth on Thursday morning. The few communications I've had indicate that all is going well and they are enjoying themselves. They will be back late on Saturday so no doubt I'll hear all about it then.

Laurence celebrated his twenty sixth birthday this week, goodness that makes me feel old, and I enjoyed a chat with him on the phone.

Peter is applying for a new job this week. It is full time, 9 - 5 but it means no more getting up at three in the morning. no more late nights, no more having the weekends, bank holidays and Christmas ruined by emergencies. He will know exactly when he is working and because it is full time, rather than the part time he does now, I will be able to cut my hours and spend more time resting. I will be keeping everything crossed for him, and me.

So today I'm resting up and doing some online retail therapy. In truth I am running out of all sorts of things so need to restock so it is more necessity than pleasure. I will probably throw in a few treats here and there though, I always do. Later on I'm going to settle on the settee and watch a few Richard Attenborough films. Brighton Rock and Jurassic Park are my favourites so they will be watched first.

Talking of Attenboroughs I watched little brother David's programme on frogs last night. I have always had a bit of a soft spot for these creatures and until recently had a frog shaped computer mouse. I loved it! He made what essentially is a one hour lecture so interesting and the hour flew by. Apparently there will be a new series of his coming out in the autumn. I can't wait.

I went into the garden this morning have picked a huge haul of blackberries. There are more ripening and it looks as though I'm going to be on track to make at least one pound of jam. The freezer drawer is filling fast and I'll soon have enough for my first experimental attempt. I'm not going to try a whole batch until I've made a first attempt. These delicious squishy fruits are far too precious to throw away in large quantities if I mess up.

Right, time and credit card wait for no man (or woman). More tomorrow.

Lunch With My Boys.

Yesterday's blog was probably a bit boring being about medical stuff etc, so today I promise only fun things, well almost.

It was an extremely hectic but fun day yesterday. We started off by going shopping, a must I'm afraid, and ended it bloated and happy. Because of Friday's appointment we couldn't face shopping on our return home so put it off until Saturday morning.  Taking to heart my weight problems I decided to look for something I could nibble during the day that was high in calories but also fairly healthy and I hit upon dates. I absolutely adore this small, brown, sticky, sweet mouthful of loveliness and they were my one Christmas, must have, treat when I was little. Now of course, you can get them almost any time of year and they have become a lot cheaper to buy. So I set out to see whether I could find any. Imagine my delight when I found a huge basket full of the things, all being sold off for 50p per packet. I was in heaven and stuffed a dozen packets into my trolley. I have already finished of one and a half packets. The best before date is January 2015 but I doubt they will last until the end of September.

I also seduced myself into buying some mixed vegetable juice. It sounds delicious and I want to start keeping my Vitamin C levels up as we approach the cold and flu season. I don't like taking tablets so much prefer to increase my fruit intake instead. Veggie juice is a lovely easy was of getting what I need, and has less of the sugary stuff that seems to have health guru's foaming at the mouth these days. That reminds me, I must contact my doctor and book my jab.

Back home we waited the arrival of Laurence. It is his birthday on Wednesday so while we were all available we decided on a family lunch out to celebrate. I'd booked a table at The Bell in Westoning, told you I was impressed, and we were ready for a blow out. Andrew drove so that Peter, Laurence and I could all have a drink if we wanted one. In then end I decided to have a fruit juice to keep Andrew company and so I could drive back if he changed his mind. With four of us at the table we had the meat platter starter to share. Peter and I would have preferred the veggie one but Laurence's birthday treat so his choice. The platter came with fresh bread and a red pepper dip, there were also some garlic mushrooms and pickled gherkins. I contented myself with some bread and the dip, while Peter enjoyed the mushrooms.

For our main both Peter and Laurence went for the spaghetti dish Peter had last time, Andrew had the mushroom ravioli and I had the spinach and ricotta cannelloni. The food was as delicious as the last time, though Andrew found his ravioli a bit too salty for his taste. He ended up finishing off my cannelloni though, which he did enjoy. They both had pudding while Peter and I watched, both stuffed to the gills.

We returned home for coffee and then sat in living room talking and watching rugby, we were all too full to do anything else. After Laurence left Peter and I watched the GP qualifying, I'd recorded it knowing we'd be out. Neither of us felt like anything for tea but we did tuck into some fruit later that evening. We fell into bed around 1030 and both slept like the dead.

I woke very refreshed this morning and, after having a bath and mixing up my weekly drugs, I decided to weigh myself. After all I'd spent the last two days mostly eating, surely I'd put something on. I've lost a pound since Friday. How is that even possible? Is someone slicing chunks off me in the night? Oh well looks like I found the dates just in time. I now have three weeks to put on those few extra pounds before the Papworth weigh in.

Today is my 'do nothing' day. I watched the Grand Prix with Peter and ironed my uniform, I forgot yesterday, and then I took a turn around the garden picking blackberries. I got a whole bowlful on Friday and there were a lot that were almost ripe then. I usually go out every two days during the berry season. This gives the berries time to ripe between picks but doesn't give the birds much time to spot them. Generally that means I get more than they do. I also had a lovely skype chat with my sister who is having a bit of a rough time of it at the moment.

Tonight I will put my feet up and enjoy a spot of TV with Andrew before an early night as it's work again tomorrow. Right time to get my lunch ready for work, being a bank holiday tomorrow I must make sure I take it in with me or I'll be starving all day. Next blog Friday.

Answers

I've been asked a lot of questions after yesterday's post so thought I'd use this blog to answer some of them.

Q: If your results are so good why are you on the transplant list?
A: It seems crazy to some people that those on the transplant list are reasonably well. Some, like myself, even continue to work. It is a very common misconception that in order to be put on the transplant list you have to be on your last legs, in a hospital bed, hooked up to all sorts of equipment. This isn't true and unfortunately the majority that are in that condition are actually too ill for transplant. To be put on the list you have to meet several conditions. One is that your condition is terminal. Without a transplant it will kill you. You have to have good underlying health. That is your other organs are working properly, so for me that's mainly my kidneys and liver. You have to be compliant with medication. That means taking it as and when you should rather than just when you remember or your symptoms reappear. You have to be psychologically and emotionally strong enough to survive the list and go through the turmoil transplant brings. You must not be either overweight or underweight, if you are you will have to gain/lose weight accordingly. There are probably other things that as a patient I am not aware of but I believe those are the main criteria. Just because you have improved slightly or you are going through a 'good' patch doesn't mean you are taken off the list. Everyone knows good health is temporary but they need you as well as possible to ensure the best possible outcome so everyone works hard at getting you to, and keeping you in, optimum condition.

Q: How are you assessed.
A: I can only answer for those under going heart, lung or heart lung assessments. You will be put forward by your usual clinical team. You will then have all or some of the following tests. Lots of bloods, RHC (right heart catheter) test ECHO, ECG, X-ray, Liver function, MRI, CT, kidney function, lung function, psych assessment.

Q: What are these tests, how are they done?
A: Blood tests, you will have a lot of these. They will be looking for signs of underlying conditions that you may not even be aware of and the function of your liver. They will also be tissue typing you and checking your antibodies. All essential for getting that perfect match.
RHC, not everyone has this. If you are a PH patient you will probably have had a few already. This is where they insert a small tube into an artery to check the pressures in the heart, look for any defects and check the state of your arteries. I always have mine through the groin but some hospitals go through the neck or the arm. You will probably be admitted the day before or early on the day and told not to eat after midnight. (Tip: always shave the area before you go in as the razors they give are invariably blunt and sting like hell.) You will be put in a gown and may be offered a sedative to make you relax, my advice is take it, it makes the whole process a lot easier. Once in theatre you will be put on your back and have a heart monitor attached. They will then inject local anesthetic into the site they are using, this really stings but it doesn't last long. Some hospitals will let you watch what they are doing on a monitor. If they don't, or you'd rather not see what they are doing, ask if you can take a ipod in with you. I was allowed to and I barely noticed a thing.
ECHO, very similar to the ultrasound they use on pregnant women. You will be asked to strip to the waste and then.put into a gown. You will be asked to lie on your side and then they apply a very, very cold gel to a round plastic stick that looks a bit like an ice cream cone.They will then press this into your chest and rub it around until they find the bit they are looking for and take picture of it. This can be a tedious process and can last up to 40 minutes. Although not painful I find lying in one position makes me very stiff. (Tip: take a packet of baby wipes with you to remove the gel. It gets absolutely everywhere and the non absorbent paper towels they give you just spread it around.)
ECG, again painless and relatively quick. You strip to the waste and remove your socks and shoes. You will have anything up to twelve leads attached to you in the following pattern. One on each ankle, one on each arm, sometimes they put one on each shoulder or collar bone and rest all over your chest. You have to lie very, very still but it is usually over in under 5 minutes.

MRI, this is where you are placed in a very narrow tube to have more detailed x-rays taken of your internal organs. The tube is very narrow and it is a good idea to point out from the beginning if you have any problems with enclosed spaces. I don't but did feel a bit anxious towards the end of the test. You do not need to move all your clothing but ladies may be asked to remove their bras. The machine is extremely noisy and makes horrible banging and clunking noises. You will be give headphones to wear to protect your ears and enable the technician to speak to you. (Tip: leave all you jewelry at home for this one. Don't even think of sneaking a bit of metal past in any shape or form. There are two reasons for this, the MRI uses huge magnets so anything metal will be pulled out of or off you. The machine also heats up any metal so you are at risk of severe burns if you leave it on.)
CT, similar to the MRI but the tube is larger and quieter. You will lie on the table, again you only have to remove bras that have metal in them, with your arms above your head. They will tell you to hold your breath etc at certain points. During the test they will inject a dye into your arm which will show up the blood supply in greater detail. It will feel as though you are having a hot flush and will make you feel desperate for the loo. It passes in seconds though so nothing to worry about.
Kidney function. You will be given a large plastic bottle and over a 24 hour period every time to pee you have to pour the results into the bottle. The bottle is then taken away and tested.
Lung function, you will be given a series of tests that basically involve blowing into different tubes. These tests measure your lung capacity and how efficiently your lungs exchange oxygen for carbon dioxide and other gases. (Tip: take a bottle of water with you, I found I developed a very dry mouth.)
Psych assessment. Before you even get there your PH or cardiac teams will be asked how you cope with medication, illness etc. When you are in hospital for assessment several 'nurses' will come and talk to you about your family, background, how you feel about your illness, how you feel about transplant etc. You will not realise it at the time but they are checking you out to make sure you are going to be able to cope with what's to come.

Remember these are based on my experiences. Some hospitals will do things differently and sometimes tests are done slightly differently if the people doing them are looking for specific things.

Q: How did you feel being told you needed a transplant?
A I suppose anxiety and relief in equal measures. This is a really difficult question for me to answer because I was told at diagnoses I would one day need a transplant. Basically I knew it was coming and had at least four years to think about the possibility before actually being put forward.

Q: What is it like being on the list?
A: Hard, very hard. You think it is going to be a doddle. All you have to do is wait but when you are waiting for a new lease of life it becomes very difficult as the weeks and months pass. Some are very lucky and get a call almost immediately and then some wait for years gradually sipping towards being too ill to stay on the list. My advice would be do not go for it unless you are absolutely sure you can do the long haul. Try and keep yourself distracted and DON'T put off doing things until after the transplant. Remember there is always the chance you will not get one and you will regret not doing things while you had the chance.

Well I hope that answers a few things for you. Please remember I can't cover everything so if I've left something out then please ask. If I've got something slightly wrong, and I know there are a few medical types out there, then I'm sorry. I am not medically trained and can only answer from my own person experiences.

Right time for a cuppa. Next blog tomorrow.

Brompton, Bupa and a Bit of Good News

Yesterday was my twenty month anniversary on the transplant list. It is looking more and more likely that I'm going to make the two year mark. To say I've been a bit down would be an understatement.

It was, therefore, with a heavy heart that I headed down the M1 at seven thirty this morning for my appointment at the Brompton. The journey itself was a breeze. Both the motorway and the center of London were unusually quiet. We arrived early and found a parking bay right outside the hospital.

First up was the dreaded ECHO. I arrived, gave my name and time of appointment only to be faced with blank looks. Luckily I had kept and brought my letter and present this with a flourish. The effect on the receptionist was remarkable, probably because I had proof that the mistake was theirs, and she called Carl my nurse specialist. According to their records my appointment had been cancelled because I was being admitted. This was news to me and Carl. Thankfully it was soon sorted and I was taken in only five minutes after my appointment time.

That over with it was back to clinic and the even more dreaded walk test. I hate doing this and always accuse my team of trying to kill me off. It was before I started the test that I got my first shock. My oxygen SATs were 94%. An amazing improvement on last time when they lingered in the mid 80's. I set off at a right old pace and was surprised when the three minute mark was called. By the time I reached six minutes I was puffing and blowing like an old steam train but still keeping a good pace. My SAT's afterwards was 88% and they went back up to 94% in under two minutes, a remarkable achievement for me. The second surprised was how far I'd walked. 250m in April, 360m today. What on earth is going on? I seem to be improving at an astonishing rate, not that I'm complaining, I'm just puzzled.

The results of my ECHO were also overall good. A lot of my measurements were normal or as near normal as you can get. My pressures inside the heart are still too damned high and my right ventricle continues to dilate but I appear to be compensating. The pumping action is still strong and efficient and I'm shifting a good amount of blood through with each beat.

So it is very good news. I appear to have stabilised again and the Veletri obviously suits me down to the ground. I still have a little bit of weight to gain and my calf muscles cramp like hell after walking but everything else is encouraging. I was told that I am now in the optimum condition for transplant. I am so 'well' that can expect the best possible outcome. This is great news but of course in order to benefit I need that call and I need it soon. The fight to get me well and stable for transplant has been won, for now. Now the battle begins to keep me there.

BUPA delivered on Wednesday exactly at the time they said they would and everything I need was there. Some things were not quite right, I've got enough Normasol to bathe in, but nothing was missed, which is the main thing.

Right more tomorrow. I've had a very busy day and now just need a cuppa and to put my feet up. More tomorrow.

Some Guys Have All the Luck

Well he drove , he parked and he didn't crash so driving into work was a complete success. He also saved a life yesterday so it was a very, very good day.

Andrew is working with his private company this weekend providing medical cover for a medieval festival in Ruislip. He is already extolling the virtues of travelling in a car over a motorbike. Arriving home warm and dry being one of them. Although he does have very effective, and very waterproof, biker gear he still gets very cold and of course there is always that gap between helmet and jacket where the rain can get in. I think we may be seeing the end of the biking era, at least for the winter months.

He was so proud of his parking he sent me a picture of it. I got another one today, I think I might be getting a few until the novelty wears off. He also sent me a picture of himself with his new best friend Daisy the Eagle Owl.  It seems work isn't all work at these events. He's also getting fed later with some real medieval food. I suspect I'll be getting a picture of that too.

I finally gave in and bought myself a tablet. I decided on the Tesco Hudl for several reasons.

First it was cheap and so if it got lost or stolen while in hospital or holiday I'm not going to be too cross about it. Secondly I can use it as a kindle. Yes I know I love reading proper books but it is not always practical. I spend a great deal of my time sitting around in waiting rooms. A book is bulky, gets dirty rattling around in the back of the car and, because it doesn't fit into my handbag, often gets left behind. This does fit into my handbag and can have more than one book on it. In fact I can take my whole library with me if I wanted too. Thirdly I can download programmes onto the bbc iplayer, so I never have to miss anything, and of course I can play games. So all in all it does everything I need it to do. I've resisted this for a long time but I can see the practicalities of having one, especially as I'm planning to do an awful lot of travelling when I'm better. It even has skype so I can keep in touch with everyone. Once I've got used to it I'll move on to a better make and model but this is great for a beginner.

I had a fairly busy day yesterday. I did make cake and I did all the ironing AND I cooked meals for next week. So today it is my 'do nothing' day. I plan to slob in front of the TV for most of it, eating cake of course, and spend the rest of the time getting to grips with my new toy. I might, just might go out into the garden and take a closer look at the blackberry's. They have started to turn an nice red and I don't want to miss them as they just turn black. I don't like them when they become soft and squidgy, and of course the longer they are on the bush, the more chance of nature getting to them.

I've been researching recipes for both jams and chutneys and really can't wait to get started. I just hope these recipes turn out to be as delicious as they sound. And I hope I don't muck it all up because it could be an expensive mess. Still, I have way to go yet, a handful of berries is not going to cut it so I reckon it's going to be at least a week or more before I can start picking. I'll have to pick and freeze until I've got enough because I can guarantee that they will ripen a few at a time just to annoy me.

I might actually wait until I get back from my holiday, which is all of three weeks away. I'm so excited! I've started hoping that my call comes after my holiday week now because I really, really want to get away for a bit of peace and quite from everything. The weekend after I return will be just perfect.

I got my results back from the Warfarin clinic and have a seven week reprieve until the next test. My INR has been stable since May so I wasn't really expecting anything else. Hopefully by the time I have to go back my GP will have spoken to them and I'll be in and out like a shot.

Talking of shots, it's that time of year again when we start booking our flu jabs. That came around quickly I must say. Honestly my life is just one big stab fest!

Well unless something exciting happens this week, trust me it won't, more next weekend. 

Sadness and Scandal

OK I admit it, I'm a bag of nerves today.

Andrew is driving into work in my beloved 156 for the first time. Talk about fickle! For two years I've wanted to get him off that damned bike and into the relatively safer environment of a car. Now I have my nerves are on edge and will be until I  get the promised text that he's arrived safely.

Peter took him out again yesterday evening and spent hours with him practicing reversing into parking bays, around corners and parallel parking. Peter declared he was very much improved from last time and Andrew himself said it had all come flooding back. As they are both happy for him to go it alone in London I have no choice but to go with the majority decision. I understand that in a few weeks he'll be racing around Luton in a whacking big ambulance, and he needs the practice of maneuvering a large vehicle through traffic but that isn't making me feel any better.

Once again the weather is more like autumn than high summer but my crop of blackberries is loving it. Another week and I'll be able to pick the first batch. It's going to be a bumper year. I'm going to be spending the next few days looking up jam recipes in eager anticipation. I also need to get some chutney jars in. Not only do I want to make jam but I've decided to have a go at tomato chutney too. That kitchen will not know whats hit it.

In the mean time, too take my mind off Andrew and the car, I'm going to bake a cake and prepare a batch of curries for next week. I haven't done this in a while and the freezer is looking rather empty so it's time I started as I mean to go on and get it done. I like to keep the freezer full of home made ready meals just in case the call comes or I become so ill I need to go into hospital. Although Peter is handy with the microwave he is no cook. Andrew is the pasta king but not always here so I need to know there is something nutritious available, and no, that isn't pasty and beans.

Well, well, well the A level results are down on last year's following a combination of the abolition of easy subjects such as health and beauty or media studies and tougher exams. I would argue that the results are reassuringly normalising. In my day very few got the absolute top grades and therefore were admitted into the top universities. Those that didn't get into universities either got a job or went to a technical college to learn a skill. Recently everyone expected to get A* with minimum effort and, mostly, they did. The result was disastrous. Kids who could hardly spell let alone concentrate long enough to string more than two sentences together were flung into a situation that they had no hope of coping with. The A level courses may have been dumbed down but the university courses were not. The result was what had been a big leap into uni life now became a chasm and many were incapable of jumping it. They thought uni was going to be one big party and they would emerge three years later with a degree having barely lifted a pen. How wrong and how cruel to give these kids such false hope. Those going to work did little better with employers complaining that the first thing they had to do was teach new employees to read and write.What a disgraceful indictment of out education system.

Now I know a lot of my former teaching colleagues will not agree with my opinions on this. Many of them campaigned to get the then education secretary out of his post but I think he did a great job. It is a monumental betrayal of our young people that he wasn't allowed to completed it. Hopefully the new person will continue his work, you never know she may have even more radical reforms she wants to put in place. Overall I think this year's results are just great and send out a powerful message. If you really want it, work for it because it won't just land in your lap. And lets face it, no one wants to be treated by a doctor who can't even spell 'medicine'.

It has been a sad week in the world of entertainment. We have lost two of our greatest stars and another is now under suspicion of sexual misconduct.

First up is the shocking suicide of Robin Williams, possibly the funniest man on the planet, ever. However possibly one of the most troubled too. If reports are to be believed he suffered from alcoholism, depression was facing financial ruin and had just been diagnosed with Parkinson's. What a pity that all those 'friends' paying tribute couldn't step in an offer help, be it of a practical or emotional nature. However, as with many suicides, they probably were not aware of the problems until it was too late. Those that talk about suicide or make several 'attempts' rarely go through with it, it' the ones that say nothing about their inner pain you have to look out for. How awful they must feel not having spotted it but, ultimately, Robin Williams purpose in life was to make everyone he met happy. So good was he at this that no one spotted the tortured man inside.

The second death, though not tragic was just as sad, for me anyway. Lauren Bacall died this week, and with her went another slice of Hollywood glamour. She was an unconventional sex siren and, as with most ofher contemporaries, could entrance a man without having to take any of her clothes off. She was of the age where glamour and decorum mattered. What a pity today's modern stars think the only way to get noticed is to strip naked as often as possible. They could learn a lot from someone like Lauren Bacall, respect for themselves would be foremost. I have several of her films and will be watching most of them this weekend, just as I spent the last few days watching Robin Williams in Patch Adams and Mrs Doubtfire. It's a small tribute but a heart felt and honest one.

The last bit of bad news is not a death but the slurring of yet another squeaky clean super star.

The news broke on Thursday that Cliff Richards was being investigated for an accusation of a sexual assault back in the 1980's. Of all the people less likely to be involved in anything like this it's Cliff. Now if it were you or I then our privacy would be respected until the charge was proven because our whole legal system is based on the premise that you are innocent until PROVEN guilty. However if you are famous, especially famous for being religious it seems, everything is played out in full glare of the media. There are many questions about the way the police have acted. For a start who told the press the exact time and date of the raid on Cliff's home so that they could set up their camera's for the best shots? Why have they announced anything at all?

Don't get me wrong, if someone has done something that needs to be punished then so be it. However I believe that unless that person has been proven to have committed a crime that person 's privacy should be protect right up to that point. I don't just believe it for celebrity cases but for all cases, especially those accused of rape. There have been so many cases recently where the girl has been proved to be lying and yet the male still has his whole life ruined. People are far too willing to believe the bad in someone and being proved innocent will not dampen the 'no smoke without fire' attitude most of us have.

I hope Cliff Richards is proved innocent and when he is I hope he sues the pants off the police for not keeping his name out off the media headlights until they'd managed to prove something.

Well those are my thoughts on the day, a bit controversial in some areas but this is an honest blog and I don't pussy foot around things just to make people like me. More tomorrow.

Won the Battle, Still Trying to Win the War.

I am so happy for Andrew. He has managed to get the last item signed off for competency in his placement book. That's it, all done and dusted with one week of placement to go. Now he can register and get ready to start his new job come October.

I am, however, bloody annoyed with my Warfarin clinic.

As you know I've taken to walking out if I've been kept waiting for over an hour, which has recently happened three weeks in a row. Each time I have questioned why I've been sitting there when those coming after me have been getting their blood taken first. I've also repeatedly told them that it is dangerous for me to wait there because of the risk of infection which could see me, temporarily, taken off the transplant list. Everything has been ignored. This morning I thought I'd try again as, having been ill, I know my INR levels are likely to be all over the place again. To protect myself I wore my oxygen with a full face mask and surgical gloves. The effect was amazing, suddenly I was the priority and was whisked in and done within 10 minutes.

When I arrived home I realised why. I had a phone call from my GP to say they had received a letter from the clinic saying I hadn't turned up at any of the sessions. I explained to my GP what had happened and that they were telling porkies. He is now going to write to them and explain the situation and hopefully that will be the end of my hour long waits. As my GP pointed out, his surgery makes sure I'm seen straight away to avoid getting infections so there is no reason why the Warfarin clinic can't do the same. Watch this space.

Isn't it always the same, just when you think you are entering a period of peace and harmony something else pops up to cause you grief. It's a never ending war of attrition.

As I think I said in my last blog I appear to have finally won the battle with H@H. The pumps will be collected in September now and to be honest the sooner the better. The sooner I get H@H out of my life for good the happier I will be. I've had my phone call from BUPA and they couldn't have been more accommodating and understanding. They did forget to give me a contact number, but then I did forget to ask, but my welcome pack is on it's way so all the numbers I need should be in there. We are off to a good start.

So with shopping done and blood taken I'm planning a quiet afternoon in. The weather is changeable to say the least so sitting out in the garden is out and to be honest I'm too tired to go out this afternoon. So I'm going to spend some time with Andrew and we'll watch a good film and catch up. Because he's been working nights I've barely seen him. I'd always left for work before he arrived home and I got home after he left for his work. The only indication of his existence these last few days have been the piles of washing up and the rapidly emptying fridge. Oh and of course the never empty laundry basket. Still five more days and then it's over until he starts his induction course for East of England at the end of September.

I've got a few weeks of hospital appointments coming up over the next few weeks. The PH clinic at the Brompton next Friday and then the transplant clinic at Papworth two weeks later. Although they are routine appointments, and I've been in fairly good health recently so have nothing to fear from them, I still feel sad to be attending. When the appointments were made, way back in May, I really hoped that I'd get my second call before having to do the clinics again. After all, I reasoned, I've had one call, my chances have been improved so surely a second call can't be far away. Of course transplants are unpredictable. I've heard of people having two false alarms within weeks of each other and then nothing. I've also heard of those getting a false alarm and then the real one a week later. And then there are those who get a false alarm and never get the real one.

However that hope is now fading. Yes I know it is only three months since my false alarm, that's nothing compared to the seventeen months I'd been waiting before it, but it awoke something in me. I didn't realise just how much I wanted that elusive transplant. Now it is the first thought every morning and the last when I go to bed. I can't relax, I can't forget about it and I can't concentrate. I'd worked so hard to get myself into that 'take or leave it' frame of mind that give those waiting on the list an illusion of peaceful normality. Now that comfy place has been ripped away and try as I might I just cannot get that frame of mind back. If anything I'm far more anxious now than I was when I first went on the list. They say life is unfair, well being on the transplant list adds a whole new cruel dimension to that statement.

Still I do have as good a life as I can expect to have in my condition and I'm well aware that it is a lot better than most. I'm still on my feet, mostly, I still work, I can still make do without oxygen unless moving around a lot and my non PH fitness is still pretty good, despite me doing nothing to maintain it. I have tried a few stretches and waving a few weights around but I can never do enough to make a difference. Some of the weights I used to throw around like bean bags I can't even get off the floor.

Right, he's up. Time to do more mothering, next blog tomorrow. 

Building Memories

When you are terminally ill there is nothing more important than those special family red letter days. Anniversaries and birthdays become extra special simply because you don't know whether you are going to be around for the next one. (And for me I fear time is definitely running out). So it is vitally important that you pull out all the stops and create the best possible memories of the day that you can.

As we were

August 13th is our 31st wedding anniversary. When we married all those years ago we were blissfully ignorant of the pain and joy that would fill the coming years. Or indeed, of the big dark cloud that is PH.

The downs have been significant. The loss of our second son William at the age of twenty one days. The deaths of Peter's mother and father. The loss of jobs, money worries and a near divorce. However we survived it all because we are fortunate that our joys have been significantly bigger than our losses.

Buying our house and turning it into a home where we could raise two wonderful, handsome, intelligent boys and mould them into the men they are today. Out of all the things I've achieved in my life Laurence and Andrew are my greatest achievements and my deepest joy. Other ups include finally using my brain and becoming the teacher I always dreamed of becoming and hopefully one day will be again.

Though out it all Peter has been at my side to comfort me, guide me and encourage me. He never complained about the nights he had to spend on his own looking after the kids while I did my degree. He stood by me, holding me up when we buried our son and took my rages and venom in the dark days afterwards and when I was first diagnosed with PH, with quite stoicism. Since then he has become my carer and my protector, fighting my battles when I've been too ill and dealing with problems with H@H etc when I've been too stressed. He even gave up his city job in London so he could be more available for hospital appointments etc. However first and foremost he is my husband and my best friend and I know whatever happens in the future he will be there still. It's a very good feeling.

As we are now

Right enough of being soppy, what did we do to make this anniversary special? After a quiet morning in, well I say quiet, I had to ring the Brompton as H@H announced yesterday that they'd be around to pick up my pumps today, we went out for a meal and then spent the afternoon doing what we do best, photographing the countryside. If I was well, and we could both afford not to work, we'd spend our entire time with cameras in our hands.

First stop was The Bell at Westoning, Bedfordshire. We've never been here and a friend recommended it as serving delicious, authentic Italian food, so, as it isn't far from our home, we decided to give it a try. I must say we were not disappointed. The food was delicious. I had Spaghetti with a tomato, basil and mozzarella sauce, while Peter tried the Carbonara sprinkled with pork crackling. Oh my goodness they were both so delicious I wished I had a bigger appetite so I could try something else. They also do an extensive English menu complete with good old fish and chips so you don't have to have Italian if you don't want it. We loved it and it will definitely be a restaurant we'll be visiting again and again.

We then hit the road and drove to Harrold and Lavendon, places we'd never photographed before, and spent a happy few hours taking pictures. Unfortunately my health and the weather were both against us. We didn't realise just how quaint Harrold was. There is quite a bit of interesting stuff to see and photograph but getting to it was a pain. Ideally this is a village to park up in and take a wander around. Of course I couldn't do that, and even on the trike it would have been difficult due to the nature of the pavements which had deep kerbs and were very narrow.

We made the best of it though and I enjoyed exploring the church and nearby graveyard which had a few poignant memorials from the world wars. I've posted my favourite here because it made me stop and think how lucky I really am. The text reads 'Erected by those who loved him. Frederic Ashuburnham Hooker Whitfield (only son of the late FH Milton Whitfield Fleet Paymaster RN). 2nd Lieut, 3rd Middx. Who fell in heroic circumstances leading his company in the 2nd battle of Ypres, 23rd April 1915, Aged 25.'

By the time we headed for Lavendon the rain arrived so we decided to go home. We'd enjoyed ourselves but I was getting tired, we were both getting wet and I needed a nice hot cuppa. We stopped at a shop on the way home and bought a bottle of something nice and a few nibbles. The intention is to share the bottle and the nibbles over a film this evening. Unfortunately neither of us can go mad as we both have work tomorrow.

I suppose as celebrations go it isn't many peoples idea of a good time. However these quite celebrations are only a temporary hiatus. Once I am well the world will be my oyster and then there will be fireworks.

The most important thing about today is that we spent it together and built a few more memories. After all isn't that what anniversaries are all about?

Tumble

Well I have to admit the weather has changed, though hardly storm conditions. A bit windy and a bit wet but no worse than any other day in autumn/winter. Maybe we have been lucky and it's missed us or maybe we will get the worst of it later on. It is significantly cooler though and one of the first things I did this morning was close the bedroom window, it was like waking up in a freezer.

Yesterday was spent as predicted, on the settee either reading or watching TV. However come the evening things got significantly more exciting.

Around nine Peter walked down stairs, as he's done several times a day for over twenty eight years and was in the kitchen making a drink seconds later when there was this terrible banging and crashing from upstairs. I was on the settee, where else, and nearly jumped out of my skin. My first thought was that Andrew had had an accident as he was in the shower. Peter and myself raced to the stairs and were greeted by dozens of books, pictures, minus their frames and glass, the said frames and glass lay in pieces at the bottom of the pile. One of the shelves we have above the stairs had collapsed sending its contents tumbling down the stairs taking whatever was hanging on the wall with it. We stared open mouthed for a few seconds and then set about clearing the mess. Thankfully no one had been underneath when it went because it would have hurt, a lot. The books are now stacked on the stairs until Peter gets time to fix the shelf, which will probably be next weekend. We have tested the other shelves and they seem OK, at least for now.

Last night I watched a brand new show called Tumble. Obviously born off the Olympic/Commonwealth Games vibe, this show has celebrities competing in a variety of gymnastic come circus type tasks. As a concept I'd say even on paper it sounds dull and desperate, and dull and desperate it turned out to be. The celebrities were mostly too old for the tricks they were attempting and the main fascination was who was going to injure themselves first. Actually celebrities was elevating most of them way above their station. The chief judge was Olga Korbet who wisely kept her clothes on and did not attempt to 'show how it's done', unlike another judge who attempted a vault and very nearly landed on his face. The highlight was watching judge Lewis Smith perform with other members of the UK's Olympic gymnast team. Lewis even threw in a few dance moves just to remind us that he is also a Strictly winner. I like Lewis Smith and I like watching top quality gymnasts performing at their best. Tumble I did not like and will not be watching again anytime soon.

I'm feeling better again this morning, whether that's down to the cooler conditions or the virus doing one I don't know. So it is back to work for me tomorrow.

Right, well it's short but sweet today. I must say I'm looking forward to the day when I'm doing so much I can't fit it all into one blog. Maybe soon. Next blog Friday.

Driving Mrs Roberts

Well he got in, he drove and he didn't hit anything.

Actually Andrew was a lot better than I'd expected. In the end Peter came with us, a) to help with instruction and b) because he wanted to do some shopping too, so I sat in the back and let them get on with it. We did a quick mini trip to Flitwick in the morning where I stocked up on fruit and veg and Andrew practiced parking in bays. He did very well, admittedly it was a disabled bay so quite wide, but we decided to get him well practiced on the easier stuff first. Then it was off to fill up with petrol. He needed a bit of advice here as he pulled up too far away from the pump and not forward enough. However he knows what to do now so next time he should be fine. Then, coming home, it was the big one, parallel parking. We choose a space that was about two car lengths and Peter was very good telling him what to look for, how to turn the wheel etc. It took a couple of attempts and one stall but overall we were very pleased.

After lunch, and now less convinced that my pride and joy will end up in a ditch, we let him loose on the motorway. A few more attempts at bay parking and then another go at parallel and we were done. If I have any real worries it's with gear changes, a bit rough at the moment as he is not used to the clutch, and steering. The power steering threw him a bit and he tended to over-steer, he also goes around corners as though they are fifty pence pieces. However everything he did wrong was all down to practice. As he's only ever driven a car four times in two years and has never driven the 156, I think he did really well.

The trip out really perked me up and I felt more like me again. If it was a virus it is certainly on the way out, thank goodness, but I'm wondering whether it was just heat exhaustion. Well the only way to find out is to go back into the environment I think is causing the problem so I'm back in work on Monday. Only for two days though as it's my wedding anniversary on Wednesday and I've got the day off. Back in again on Thursday and then three days off. It should be enough to see if it is the heat in the room without me keeling over again. We will see. I hope it was just a virus because it it is not then I don't know what I'm going to do. I can't just stop working during the hot months.

Amazingly I got a call yesterday form H@H. On the month I get rid of them they actually ring me on the day they are supposed to. How bizarre is that? The girl I spoke to seemed to take it personally when I said I'd been moved to another provider. 'Oh! Why is that?' I was speechless! In the end she said rather huffily that she'd check for notification from the hospital. If she couldn't find one she'd ring me back on Monday. Peter is of the opinion I should just go for it and that way, if both deliver, at least I'll have built my stock back up. The problem I have is can I put up with all the aggro for one more month? Oh well. I have the weekend to think about it.

Today I'm spending a quite one watching DVD's and snoozing, mainly because I was awake at five this morning. No idea why. Nothing really woke me I was just awake and couldn't get back off to sleep again. So I went and made myself a cup of tea and sat in bed reading. Although I feel fine at the moment I'm pretty sure I'll be a mess come three.

We have been told to brace ourselves for a hurricane tomorrow. Looking out of the window at the moment that seems rather hard to believe. However the way the weather has been this year anything is possible. It looks as though it will hit us by midday, having made a mess of the south west corner of the UK early on Sunday morning. Of course the weather forecasters are hedging their bets by saying they cannot be sure exactly which part of the UK it will hit. Or if it will hit us at all, if we are lucky it will make a detour into France instead. In other words they don't know what's going to happen but are issuing their silly colour coded warnings like confetti just in case.

As I've already been up four hours my stomach is telling me to eat something, so I'm off in search of biscuits. More tomorrow.

Welcome to BUPA

Well I am delighted. After eight months of stress, phone calls, emails and broken promises, I'm finally kicking Healthcare at Home into touch.

I had a call from the pharmacist at the Royal Brompton yesterday to say I had been swapped over to BUPA and my first delivery would be on the 20th of this month. I can expect a call next week for my stock levels. The only slight bugbear is that the CADD pumps I have now belong to H@H and so those will have to be swapped to pumps belonging to BUPA instead. Now I've been taught how to set the pumps up so that's not a problem. I'm just worried as to how long it will take H@H to collect the blasted things. When they did my annual service I had my old pumps hanging around for months. Still that's a small thing for peace of mind.

I've been asked if all Brompton patients will be switched over. Certainly the email I got for Carl indicated that would be the case. However it did say those who had most problems would be swapped first. So I'm assuming that if you haven't had problems, or haven't told the Brompton about it you will be pretty far down the queue. My advice would be to ask.

I've heard good things from patients already on BUPA, one said that in seven years they had only made one mistake. A pretty good record. You see I'm not expecting perfection. Technology, human error, the weather, supplies etc all cause the occasional hiccup. What I objected to was being left for days without my medication or the means to take my medication. I've lost track of how many times I've had to rush out to my local chemist to buy needles, syringes etc. In the end the chemist was so sympathetic they gave them to me free. One mistake in seven years I can live with, whether I will need them that long is another matter.

Smirnoff scares me to death when he does this

So how do I feel today? Well much more rested and less stressed that's for sure. I'm popping out later to get some fresh air, as I've been stuck inside for two days, and hopefully that will give me an idea of how I'm really doing. SATs remain high and despite a painful chest I'm not producing anything and my airways remain clear and crackle free. I have decided not to risk another trip to the warfarin clinic, as I really can't risk catching something else. I have phoned them and explained why I won't be going and to say they are less than sympathetic would be an understatement. However I'm standing firm, after all it's not the snooty receptionist waiting for a transplant it's me and I just cannot risk infection. Why they don't get that I don't know. I will go next week though as I will be fully recovered by then.

The big moment is here. Andrew will be taking me out in the 156 this morning. I want to go and get some fruit as I've munched my way through everything in the house. So I've agreed to let him drive me. It will be a benefit to both of us. I get out and he gets some practice. We are going to do the three things that scared me to death as a new driver. Parallel parking, parking in a bay and picking up petrol. I was never shown how to put petrol in a car when I was learning so when I tried to fill up for the first time didn't know how the pumps worked. Of course that won't be a problem for Andrew but lining up at the pump and getting the petrol cap off might be. I'll let you know how it went in tomorrows blog.

Right time for lunch and it's ginger beef stir fry today. I feel I need a bit of a veg hit so this is ideal being packed with peppers, mushrooms, carrots and beansprouts. More tomorrow.

Having a Dickens of a Time

The big question is do I feel better?

Well I certainly feel more rested and less stressed, certainly a step in the right direction. I also didn't wake myself up coughing last night so had a solid eight hours. My SATs remain high, for me, at 91% so it looks like I'm not going to go downhill and will be on the mend soon, we can but hope.

Yesterday was a long day of doing nothing much. I played a few games on my computer. I try not to do this as I quickly become obsessed, read a few chapters of my book and watched a lot of rubbish on TV. In short I had a really lazy day, perfect! My one sadness is that I missed the last day of one of my supervisors, Karen. She has spent the last few years studying to become a teacher and is starting her new adventure in September. I will miss her dreadfully as she was one of the very few people I felt I could really confide in. Still there is always a plus side and this clouds silver lining is that I've gained a trusted and loyal friend.

Of course I can never escape work completely and found myself having a long Skype conversation with my sister Wendy yesterday as she badly needed advice on a very tricky situation involving my niece. Obviously I don't mind giving advice to any of my family and friends but sometimes the cross over between work and home life is extremely narrow. Job done, I really hope it was of some use I retired to the sofa and watched Traffic Cops, what did I say about never getting away from work, lol!

Talking of books I'm currently reading Drood by Dan Simmons. The book is supposed to be the finished version of Charles Dickens unfinished novel The Mystery of Edwin Drood. I am not a Dickens fan, though have read most of his works, and this is nothing like a Dickens novel. In short it appears to be a character assassination of Charles Dickens and Wilkie Collins, the supposed narrator of the book, crossed with a very poor 'Mummy' copy. Now I very rarely give up on a book. I think I've only not finished two but the further in I get with this novel the more I feel I might not make it. In short if you are a Dickens fan and think you are in for another classic don't bother. If on the other hand you like fantasy adventure you may just get on with it.

Of course I had to alert Papworth that I was a bit under the weather. This I hate doing because I live in fear of being removed form the list for a period of time. They have never removed me yet, but the fear remains. Once again they said that it was fine and I could stay on the list, however if I got worse then I was to let them know, standard advice and I once again breathed a sigh of relief.

So what to do today, well same as, same as really. Resting up, watching TV and generally behaving myself, which we all know is not what I do best.

Today is the last of a set of four for Andrew and tomorrow is the great 'first time in the 156' moment. I don't know who to worry about most, my precious car or my precious son. I think the car wins it as he will much safer in the car than he is on his bike. Peter is going with him for the first trip just in case he gets himself in a situation he can't get himself out of. The turning circle of an Alfa 156 is rather greater than that of a Suzuki Bandit for instance.

I face a dilemma tomorrow. Do I attend my warfarin clinic? Tomorrow I will be two weeks over due with my test, having walked out last week. As I'm sort of convinced I picked this virus up at it last week, my instinct is to say no, leave it until you are better. Certainly Peter thinks I should wait as he thinks I could well pick up something else. The trouble is if I ring in and say I'm not coming because I'm not well they are going to think it is just an excuse. I think I'm going to have to make that decision tomorrow.

Right better get on. I'm going for comfort food today, thankfully my appetite hasn't been compromised, and have dragged a steak and ale pie out of the freezer for lunch. I just wish the blackberries were ready because I really fancy blackberry and apple crumble for afters.