Saturday, 30 November 2013

Lunch With Laurence

Well I slept like the dead the last two nights and  have woken up this morning feeling so much better for it.

Truth be told I spent most of Friday dozing, so much so that I kept waking up and finding Smirnoff staring at me with a concerned look on his face. Unfortunately due to my churning stomach I had to put my weight gain programme on hold, it was resumed yesterday as I went to Laurence's for lunch.

Laurence was doing some DIY and required Peter's help so we were invited to lunch so we could spend some time together while Laurence got some help. So while they were doing their thing I got to sit on the settee and watch TV. They finished suprisingly quickly as the thing they thought was going to need replacing ended up just having a loose wire and was fixed in seconds.

So after a pasta lunch we said our goodbyes and headed for Tesco's as we had plenty of time to do the grocery run on the way home. This was a bonus as we thought we'd be at Laurence's all afternoon and were not looking forward to going shopping on a Saturday this close to Christmas.

One this run I bought loads of nuts, no I'm not going mad, there is a sound reason behind it.

There was an article in the paper yesterday stating which nuts were good for which ailments etc, etc. Now apart from being good for you nuts are very high in calories, just what I need at the moment. Having read the article I bought cashews because they are full of the vitamins that support your immune system and help oxygenate your blood. Perfect for someone like me who has problems in both these areas. I also got peanuts for the high fat content, I had to get them in shells though because everything else was salted, not so good for me. I also got some mixed nuts and a bag of mixed fruit too. The plan is to take a small pot in to work every day so I can nibble constantly between meals without getting full up or feeling sick. It might work, it might not but I figured it was worth a try as clearly the Maltesers are not doing their job.. There was a word of warning though. Some nuts, notably Brazils, are so rich in certain vitamins they can be poisonous if eaten in large quantities. Ideally you should only eat four or five Brazil nuts per day. Wish someone had told me day in the days when I could down a packet of twenty chocolate covered nuts in one sitting. Though to be fair I don't appear to have died so alls good.

In the news I was sadden to her about the police helicopter crashing into a pub when I woke up this morning.

So, so sad at anytime but especially so close to Christmas. The police get a lot of bad press and are actively hated by some sections of our society and media, but of course the enormous amount of good they do each year doesn't make such good headlines. These poor officers were undoubtedly on their way too or from a serious incident and should be praised for their bravery.  However I have no doubt that the pilot and the other officers who died will soon be splashed all across the papers branded careless murderers before the week is out because it has to be their fault, right? It is so expensive to run a helicopter these days some forces have had to get rid of theirs. Others only fly them in the most extreme of circumstances so these officers were probably on their way too or from saving someone's life.

The trouble is that the most vocal anti police protesters would be the first to complain if their child, relative with dementia or suicidal thoughts came to harm because a helicopter wasn't available to join in the search. I hope that the majority of people realise that underneath the uniform these officers are humans too, with families who will be grieving just as much as the families of the poor victims in the pub. And I also hope the media will stop their 'every officer is a corrupt bully' angle and show some respect for a change. Sometimes accidents just happen and no one is too blame.

Also in the news the trial of the murderers of Lee Rigby has started at the Old Bailey. The two murderers, because there is no reasonable doubt here, say they did it in order to 'get soldiers out of their country'. As they are both British they are clearly confused. These two men will not see the outside world again. It is doubtful they will last long in prison but in their twisted minds this is a good thing as they think it will turn them into martyrs. It won't but try telling them that.

I'm A Celebrity Watch

I have just one thing to say. Vincent Simone in a giant spider costume!

Oh my goodness! I very nearly cracked a rib I laughed so hard. That has to beat Matthew's bikini as the most memorable moment of the series so far.

I wish Joey hadn't been made Camp Guardian as he's bound to give Amy immunity from the first vote off, damn it!

Well time to start thinking about lunch. I was going to do toad in hole but can't be bothered this morning so we are having sausages and mash instead with lashings of onion gravy. Yum!

Thursday, 28 November 2013

Floored!

Well as you can probably guess by the fact that I'm posting on a Thursday, something is wrong.

Thankfully though it has nothing to do with my heart, lungs or PH. I woke up about five this morning and the room was spinning. I felt sick and I had a terrible headache. I stumbled downstairs and grabbed a couple of paracetamol and returned to bed waiting for it to work. By six, my usual getting up time, I knew I wasn't going to make it so hit the off button on the alarm and closed my eyes again. By seven I was coherent enough to call work and let them know I was not going to be in but listening to my supervisor on the end of the phone brought fresh waves of pain as he shouted back at me. He wasn't it just felt like it. Back to bed I went feeling decidedly worse than when I got up.



Now I have suffered from Migraine all my adult life and like most sufferers have found that early intervention tends to fend the worst symptoms off. Normally a migraine for me these days amounts to nothing more than bright flashing lights and a slight headache, I can usually carry on right through them. However, when they come in during sleep they are deadly as I don't notice anything wrong until I wake up, and by then it is too late to do anything. I just have to lie down in a dark, silent room and wait for it to pass. Fortunately for me the early paracetamol did help and by nine I was able to sit up and have a cup of tea to wash down another couple of pills. They finished it off and by ten I was feeling much better, although a tad spaced out. I will feel 'unbalanced' for the rest of the day so will be taking it very easy and hopefully sleeping lots.

So what caused this little episode? Well wouldn't you know it! After saying I'd been having such good nights last week, I had the exact opposite this week. Most nights I've been in bed by ten but unable to drop off until the early hours and I've been waking around five. I've been getting around three hours a night since Sunday. It has also been quite a busy week at work so combine the two and you have a sleep deprived and stressed out Hazel. Hopefully now I'm off for the weekend I can relax a bit and catch up.

I'm A Celebrity Watch

I've been recording this so I can watch it without adverts and the constant phone reminders so, for me anyway, it is a far shorter and far more entertaining programme.

However things are not going to plan this year. The trialists have been very good and Amy, Joey, Kian and Matthew have all returned to camp with a high number of stars ensuring the camp is not going hungry. Remember last year with Helen? They were just about ready to throw her in the pot by this point. Instead we have a group of, mostly, happy, well fed camp mates.

There have also been tears, as there always are halfway through, but not as many as usual. Alfonso, Kian, Matthew, Laila, Amy and Rebecca have all had a good cry for various reasons but no one has expressed a desire to go home.

Joey 'I can count' Essex is proving to be a dim (the jury is still out as too how much is an act) but very pleasant young man. He gets stuck in, doesn't moan and, although he didn't know an Emu was a bird, is very watchable.

Amy by contrast is proving to be a bit of a manipulative little madam. She seems to think her role in camp is to lie around looking pretty. This has annoyed her camp mates who have cajoled, hinted and told her to do more around camp. Amy never offers to do anything. She has to be told or asked and then she will do the task as poorly as possible. For instance Lucy was gathering logs and coming back with armfuls. She asked Amy to help, which she did after a bit of primping, and returned with two small sticks stating that was all she could find. Resentment boiled over into a row last night and Amy, after having a little cry about being picked on, fought back by stating she had done something. She'd brought Annabel's food to her. It will soon be time to start voting people out and I predict Amy might well be one of the first out.

Rebecca is causing controversy because she has been ruled out of a couple of trials on 'medical grounds'. Speculation is rife and the vitriol horrendous. Poor Rebecca, she has done something very few of us would even dream of achieving, twice, and still she can do no right.  I don't care why she has been ruled out of tasks, she is not the first, nor will she be the last. She has clearly kept the reason to herself to avoid the sympathy vote and frankly it is none of our business anyway.  She has received all manner of insults over this and yet when she is put up for trials she doesn't get voted to do it. Puzzling don't you think.

So half way through who do I think will win. Well I think Kian would be my first choice followed by Lucy, Laila and Rebecca. Personally I would love Rebecca to win it but in my heart I know she won't. As long as she survives longer than Amy, I'll be happy.

Right I've been called down for lunch and then it is back to bed for a couple of hours.

Sunday, 24 November 2013

Didn't We Have A Lovely Time, The Day We Went To Norwich

I love my husband very dearly but there are times I could murder him.

Take today for instance. He'd bought something of ebay that needed collecting, not normally a problem. However the something was big so needed to be collected in my car, as I have a hatchback and seats that fold down, and the only day both parties could meet up before Christmas was today. And so it was that I found myself being dragged out of bed at 0730 this morning, my last chance of a lie in before the new working week, in order to get to Norwich by eleven.

To be fair he did say he would go on his own if I didn't want to go along but, you hear so many stories about people getting their cars stolen or having their wallets taken when meeting to exchange products bought on ebay, I really couldn't refuse. I have no idea what use I'd be in that sort of crisis, what could I do? Wheeze on them perhaps, but an extra pair of eyes is always useful.

The roads were quiet, it being a SUNDAY, and we arrived at our destination dead on time. I then sat in the car for half an hour while Peter and the bloke he was meeting had a long discussion about cars, what else, before loading the something into the back of my car. The something turned out to be a set of leather seats Peter was intending to put in his own car, as the fabric ones are beginning to show their age.

The journey back was more stressful as the rest of Britain had woken up and all seemed intent on travelling on the A14. We stopped just outside Papworth for a bite to eat at a roadside cafe, and it turned out to be nicer than expected.

So I'm sitting here with a nice cuppa awaiting the start of the Grand Prix and the reason for the early start. Yes we had to get back in time to watch it.

I took a chance and weighed myself yesterday and was so disappointed to find I've lost again and am now firmly under eight stone again. Short of eating packets of lard I don't know what else I can do. A friend suggested a food diary as she thinks I might be eating less than I think I am. This might actually be a very good idea and so I'm starting one tomorrow when I'm following my normal routine.

Strictly Watch

The judges started to really nit pick this week. With only four weeks to the semi's it is only fair that minor infringements and mistakes should not be ignored any longer. However it seems the judges are more willing to nit pick some dancers more than others.

My favourite this week was Ben with his Charleston. It was fast, funny and the audience really enjoyed it. Not so the judges who took turns to slaughter him. I really do not know what their problem is with Ben, it seems to me they have collectively decided to hate him. Another in the firing line was Suzanna who again danced well but evidently not good enough. She was gracious about her scores but you could see she was disappointed.



Someone who really should start listening to the judges is dull Sophie. I think after her Charleston things have slipped dramatically and all the dances look the same. She has a rather unexpressive face which doesn't help and dances as though it is all too much effort. However no matter how many times she's told this and says she will try, ultimately the result is the same. I seriously think Sophie's days are numbered.

Teacher's pet Natalie still managed a ten despite a rather lack lustre tango. The judges were right, there was very little passion and she messed up a few step but the still give her a ten. How?

So top, for me anyway, Ben, Patrick and Mark. At the bottom, Sophie, Natalie and Suzanna. However I think it will be Ben and Mark in the bottom two, with possibly Mark going this week. Of course the ideal would be Sophie and Natalie but I think we will have to wait until the public call the shots before getting rid of either of them.

Saturday, 23 November 2013

Trying To Get Into the Christmas Spirit.

The shops are full of tasty morsels to tempt the palate and muzak to annoy the hell out of you.

Yes, I have started my Christmas shopping. Woo hoo, I think! To be fair I am a grumpy soul when it comes to Christmas, especially when this is the second year I'll be working right through it.

I so remember the excitement and anticipation of the build up to Christmas that made each year of my youth so special. We were poor, and I don't mean poor in today's sense where you have no food on the table but can afford a 50 inch TV, ipads etc, etc. My mother scrimped and saved throughout the whole year to give us a decent meal and some presents but we were always delighted with the end result.

I remember coming home from school and smelling the pudding or mince pies that were made early and then stored for the big day. I remember decorating the tree whilst watching a Christmas film, usually White Christmas or The Sound of Music and the tree was always real and threadbare by Boxing Day. It was fun and my heart sung from the joy of it all.

When we got married we would return home for Christmas each year and divide our time between both families, so effectively having a double Christmas. Then our own children started to arrive so going 'home' became impracticable and we made our own Christmas. I followed the pattern of my mother and made as much as I could myself. Not restrained by the financial difficulties of the past we started buying ready made this and that and eventually I found I was buying everything and doing nothing for myself. I'd attempt mince pies but not being a natural with pasty they tended to resemble bullets so I gave in as Tesco did a much better job than I every could.

As the boys got older and Christmas became more commercialised it began to lose it's magic until in 2013 it has become more shopping opportunity than a religious festival or indeed a chance to spend time catching up with the relatives. And so it was that yesterday, whilst deafened by 'Jingle All The Way' I made my first Christmas purchases. Although we will not be together on the actual day, we are going to spend a couple of days together so it will be a good time to indulge a little.

The first thing I saw was a copy of White Christmas on DVD for three pounds, well I just had to have it. Peter and Andrew groaned loudly but I will play it when on my own wrapping presents. If that doesn't get me into the Christmas spirit I don't know what will.

The second thing I bought was some Crabbies Ginger Beer. I normally love this stuff  but have never tried the flavoured ones before. As it was on special offer four bottles were bought to try. I reasoned that if we liked it we could get a few bottles in our favourite flavours as a treat. I absolutely loved the Raspberry one, it is even better than the original but I'd forget the Strawberry and Lime if I were you, yuk!. Guess what will be landing in my shopping basket next week. The only worry I have is whether I can keep my hands off it until Christmas.

Next week the shopping begins in earnest as I really have to knuckle down and start spending money. And I've decided to give the mince pies a go again. Wish me luck!

Today will be a very quiet day in. Apart from the ironing I don't plan to move my bottom from the settee unless it is for calls of nature and food. There is a reason for this, I'm shattered. After a week of really good sleeps it really hits you badly when you have a bad one. Four o'clock I was up this morning and I made the fatal mistake of going back to sleep at six which means I'm going to have a thick, achy head all day. I just hope tonight will be better or Sunday will be a complete daze.

I'm A Celebrity Watch

Fortunately we got to see a lot less of Joey's teeth yesterday but unfortunately more of Amy's. Amy proved to be surprisingly cool and confident during the trail and brought home seven stars, thus ensuring she won't be voted to do anymore. After all the public don't want to see someone doing well, they want these people to suffer for goodness sake!

Possibly sight of the series, and definitely not one I want to see again, was Matthew in a white bikini. My eyes! My eyes! Unfortunately it is an image that will be sticking with me for some time.

Yesterday also saw the arrival of two more camp mates, we know who they are but the rest of the camp doesn't, yet.



Annabel Giles is going to cause problems and is probably going to be voted to do a lot of trails. However I think she will be beaten into second place by dancer Vincent Simone, yes him off Strictly. Vincent is even more of a wimp than Matthew and screamed louder than Annabel when joined by cockroaches and rats, or as he charmingly put it 'mouses'. All I can say is Joey had better watch out because Vincent will most certainly make a beeline for Amy when he sets eyes on her. Could be interesting.

Well time to be thinking about lunch, stir fry with noodles today. I feel I need a veggie hit big time.

Friday, 22 November 2013

In The Land of the Teeth.

Well another day, another dollar so they say. By some miracle I've made it through another week of work relatively unscathed. I'm particularly grateful to two of my work colleagues who made strenuous efforts not to pass on their colds this week. Thanks so much girls, your consideration means a lot to me.

I am pleased to say I've had a week of sleeping really well. I've had no difficulty dropping off and have not woken up around two and lain awake for hours. As a result I'm feeling quite perky. Now normally I'd celebrate this feeling but history shows that it's just when I'm feeling my best that disaster strikes. So although I'm happy to be feeling this well I'm not taking anything for granted and am being very, very careful. I'm going through antibacterial hand wash like it's water.

Only six weeks until I won't have to do this every night

Another week has passed and it is four weeks since my original complaint to Pizza Hut and two since my follow up. Clearly they do not want to talk to me and I'm at a loss as to where to go from here. Rest assured though I will think of something. I'll let you know what when I've got it.

I did receive some good news in the post this week though.

I'm booked into the Brompton as a day patient on 7th January to swap my Flolan over to Veletri. This solves my appointment problem too as they will do my ECHO and all the usual tests while I am there. OK it is only a week before my Papworth appointment but it is still before and they will fast track the results to Papworth so nothing has to be repeated. Phew! Thank goodness for that!  I'm still a bit disappointed that my meds will continue to interfere with my plans this Christmas but there is light at the end of the tunnel.



As from January daily drug prep will take ten minutes rather than the forty it does now. OK, I know it means I'm going to have to spend an hour or so making up the meds on a Sunday afternoon, I've chosen that day because it is the only day we very rarely go out, but I'll swap a couple of hours for getting 30 minutes back each day very gladly. It means we can go out in the evening on a whim again. It means we can go to the theatre without me having to spend a week gradually bringing my change over time forward to accommodate the show start time. It also means I can have lovely long lie ins without worry about my meds running out as I'll only have to change the cassette once a day rather than twice.

I know some of you are probably thinking 'well if making up the meds at night is such a problem why not do it in the morning?' Well the problem is that I'm still working. I already get up at six every morning to get into work on time and I do not intend getting up at five just to make up my drugs. Oh I've just realised! The new drug will also give me an extra ten minutes in bed on a work day. What's not to love?

Of course the absolute ideal would be getting 'The Call' between now and then so I start 2014 free of all the hassle of pump, bag, needles etc, etc. However having just marked my eleventh  month on the transplant list I'm losing hope of it happening this year and have set my sights on the spring as an ideal time. To recover sitting in the sun or strolling around the village admiring all the flowers and tentatively starting to sort my own garden out would be sheer heaven.

I'm A Celebrity Watch

I swore blind I wasn't going to so do a celeb watch this year as with a programme almost every night it is difficult to keep up with. However after one week I'm just can't stop myself from commenting on the greatest puzzle of the year. Why is Joey Essex a celebrity?

The first thing I notice about this pretty boy was his teeth. I don't think I've ever seen a set of veneers so badly done. They are miles too big for his mouth and so white they couldn't possibly be real, as demonstrated by his bottom set, which are distinctly dingy.  The second thing was his lack of brain cells. Yes poor Joey has not been blessed when it comes to the brains department.

This is a man, he's in his twenties, who is unable to tell the time despite sporting a watch the size of a dinner plate, doesn't know what 'submerged' means and was never told how to blow his nose. Really? There is a huge debate going on as to whether he really is that stupid or a remarkably good actor. I personally think it is a bit of both. Lets face it, if he really was as thick as he makes out he'd be in a home somewhere being cared for. If he was that good an actor then he'd be in films or in the theatre and being described as the next Laurence Olivier.  Instead he's made his name in a tacky reality programme, a career that has lead him too, well, another reality programme (though possibly not so tacky).

So in conclusion I do think he is thick but manipulative with it. He knows he is in a competition and so has done all the things needed to keep himself in the limelight. I am pretty sure all the hysterics were so the public would vote him in for each task ensuring maximum air time. This has backfired a bit as, having proved to be rather good at the tasks, the public have decided to vote for someone else in the hope of better entertainment. If he was really clever he'd have played up terribly ensuring he got chosen to do every task.

Enter beauty queen Amy. Personally I do not find her beautiful but I'm assured by several of my male friends she has two definite attractions that are difficult to overlook. Amy and Joey appear to be attracted to each other but again this could be an act in order to gain air time. Amy is another one with teeth and I fear that should the attraction be real and develop into kissing that Medic Bob will need more than a pair of tweezers to prize them apart.

Yes Amy got voted to do the task last night and was worried that the public 'hate' her. Well if you go around making national treasures, and Olympic champions, cry what do you expect? Poor Rebecca, I am amazed that someone with two Olympic medals is so insecure about herself. I hope she trounces the pretty pair and if she doesn't win outright then lasts longer than Amy and Joey as she has more going for her than both of them put together.



Others that I am enjoying watching are Laila, Matthew, what a wimp, Wright and the bloke from Westlife who seems the most normal so far. As for David and Alfonso, please boys, keep your shirts ON!

Right I'd better get started on lunch and then I've got the weekly Tesco run. More tomorrow.

Sunday, 17 November 2013

Strictly Blackpool

Well after a lovely restful day I had a lovely deep sleep and woke up at ten to ten, ohps! There was a mad scramble while I changed my meds, which should have been done at six, and then I went and chilled in the bath for half an hour. I'm so glad today's lunch is all prepared and ready to go in the oven otherwise I would really be having a bit of a panic.

So now everything has calmed down again I am taking ten minutes out to write this blog and then I'll be running around with a mop and duster before Diana arrives this afternoon. Thankfully Andrew is at home this weekend, after completing a successful placement, so between the three of us it should only take half an hour to get everything straight. I will still have the ironing to do but than can wait until this evening.

I make it sound like I live in a pigsty don't I. I don't, I just like everything to be 'just so' when I have visitors. That's going to be another thing that is going to drive me mad when I come home from transplant. At least until I'm fit enough to start doing things myself again..

I'm expecting Laurence to arrive sometime in the next hour and we will all sit down to lunch together, probably the last time now until Christmas. He has taken a few days off when Jenny arrives from Australia so at least I will get to see him again between now and then. In the mean time I'm going to make the most of having my family and best friend around for the afternoon.

Strictly Watch

This week was the Blackpool edition, the home of ballroom as we are reminded as nauseam.

The thing with Blackpool is everyone gets very excited, even the judges, and tens start flying around like confetti even when they are not really deserved.

Everyone did raise their game though and Abbey and Suzanna did deserve their tens after flying around the vast floor space as though they were competing in the 100m dash. Patrick should also have got a ten for his Samba and I'm sure he would have if his partner hadn't got her dress caught on her heel and caused both to stumble.

The person who most definitely should not have got tens is Natalie.  I was stunned when the scores came in and wondered whether I'd watched an entirely different dance. There was nothing I liked about the routine at all. The music was dreadful and I thought the routine lazy. I couldn't even work out what it was supposed to be. It was a Charleston apparently. What really got to me was Natalie's hair. Clearly they only have one wig this season and are putting it on as many celebrities as possible. However what worked really well on Abbey last week definitely did not work on Natalie this week. It was jammed on so badly it resembled a swimming cap and so badly styled it looked as though she'd dipped her head in molasses. I know it was supposed to make her look like she belonged in the 1920's but all it succeeded in doing was turn a very pretty girl into a, dare a say it, very ugly one.

I don't know what it is about Natalie. The judges seem to have a blind spot as far as she is concerned and faults that would have been described in great detail if attached to any of the other celebs are conveniently overlooked. This is not only annoying it is grossly unfair, to the other contestants and Natalie herself. Judges favourites rarely make it to the top as as soon as the judges lose their Vito the public vote them out.

Not doing quite so well were Mark, Ben and Fiona, though all were told they had improved, which to be fair they had. Mark, with his bulk and knee problem, was never going to deliver a quick, crisp jive but he made a good effort. Fiona's fear of lift's showed badly and ruined what promised to be a good routine. And poor old Ben once again suffered from nerves and too much muscle.

So bottom three have to be Mark, Fiona and Ben and I suspect the dance off will be between Fiona and Mark, with Mark bowing out. However, we could be in for another shock and I wouldn't be a bit surprised if the public don't put Natalie in the bottom two this week.

Right I'd better get going, floor to mop etc, etc. And tonight it's the first of the I'm a Celeb run. Three weeks of bliss here I come. Next blog Friday.


Saturday, 16 November 2013

Sweet Charity

I can be so dopey sometimes it even scares me!

It had completely bypassed me that yesterday was Children in Need day and so everywhere I'd go I'd find people behaving like complete idiots and trying to mug me for money.

Now I'm not adverse to charity. It goes without saying that I give regularly to heart, transplant and PH charities. I buy most of my reading material from charity shops and therefore contribute to other charities this way, and I always, always give my small change to the man selling the Big Issue outside Tesco's. I give because there is no pressure whereas Children in Need, and Red Nose Day for that matter, is charity at gunpoint.


If you can get over the slight whiff from the fact that the biggest children's charity event is hosted by the BBC, an organisation that seems to have been completely staffed by sex offenders during the seventies and eighties, then good for you. I find it a bit, well, uncomfortable and spent the short time I did watch it expecting Sir Terry to be dragged off stage by the flying squad at any moment. The whole thing is too bright, too loud and far too pleased with itself.

So yesterday I set out totally oblivious to do my shopping. Tesco's was quiet it was normal, it gave no clue as to what was to come. In fact it was so quiet we whizzed around and got out in record time. Then we made the big mistake of hitting Costco.

We were greeted at the door by a large green crayon and things sort of went down hill from there. Within minutes of entering the store we were accosted by a man  in a tatty fur onesie carrying a bucket who announced cheerfully that he was Fred Bear 'threadbare, get it?' Yes I do, it's not funny, move on. Further along we were stopped again. This time by a grossly overweight Mr Spock, he's really let himself go since Captain Picard took over, who rattled his bucket menacingly and glared at me as though I'd just drowned a kitten when I said I had no spare change. I was telling the truth, I hadn't, I'd given it all the man outside Tesco's. By the time I watched disconsolately as a six foot penguin scanned my shopping I never wanted to hear the words 'Children in Need' again.

Of course my torture was far from over as I realised when settling down to watch TV. I did see one good bit before I turned off and that was the Harry Hill take on Aha's famous pencil drawing video. After that I watched Poirot  and sobbed my heart out for the second time this week. There's nothing like a good TV death to keep me happy.

Today I've got the unpleasant task of writing a letter of complaint regarding my treatment by the new doctor. I've been urged by several people to also complain to the GMC. I am still considering that one but I have passed her report, which states among other things that I am still waiting for an appointment for transplant, to my specialist teams at the Brompton and Papworth . I know for a fact that Carl will have an attack of apoplexy when he reads it.

After that I've got the boring task of unpacking and sorting out my drug delivery. Not an easy task when you have five big boxes to pack away. Thankfully Peter is home today so it should get done a little quicker this time around. Then I can relax and enjoy my day. I'm planning feet up and a good film followed by a bit of baking and then preparing a lasagna for lunch tomorrow as Laurence is coming over. This evening, after Strictly of course, it will be another film fest, possible accompanied by a small glass of cider as a treat.

Sunday I have lots to look forward too. Laurence is joining us for lunch and then Diana is coming over in the afternoon for a good old gossip and the day will be neatly topped off with the first episode of this year's I'm a Celebrity. What better way to round off the weekend.


Friday, 15 November 2013

Science And Intrigue

Well it has been a bit of a week all in all. Thankfully I have come through it mostly unscathed but I do not wish to repeat the experience. Unfortunately I can't tell you about any of it as things are still ongoing but watch this space.

One of the things I can say is that I came across another doctor who was totally ignorant of PH and told me I just had 'high blood pressure'. So sitting there with my oxygen and pump on doesn't indicate something a bit more serious? I also had to explain that you didn't get appointments for heart/lung transplants and by then was rapidly losing the will to live.

Now I can almost forgive a GP for not knowing about PH. It is so rare that even those in the medical profession are not aware of it unless they have come across it before. Not knowing how transplantation works though is an entirely different kettle of fish. I suppose part of the problem is that living donors for kidney's and partial livers are becoming more common and for these, of course, you are going to be given a date. However I don't think anyone, no matter how generous of spirit, is going to offer you their heart as a living donation.

It also kicked off on the PHA group this week and what was the argument about? Religion or more accurately what people believe. I've said it once and I'll say it again, never discuss religion or politics on the Internet, or anywhere else really, it will always end in a fight.

My efforts to change my appointment at the Brompton are ongoing. Honestly how hard can it be to arrange for me to be seen BEFORE my Papworth appointment as requested? Things were further complicated yesterday when I received a letter moving my ECHO to the 24th Jan, which again is AFTER my Papworth appointment. Now I'd requested my ECHO remain on the 27th December so even if my clinic appointment couldn't be changed as least Papworth would have that result. ARRRGGGHHH!!!  So I called Brompton this morning and explained my predicament once again and once again they said they will look into it and get back to me, I'm not expecting anything. Best not too, saves the disappointment.

Today I'm stuck inside waiting for my drug delivery. I so hate having my Friday's ruined by this ritual but it has to be done. However I'm putting the time to good use as I'm washing all the clothing, bedding and towels. I was going to run around with the duster and mop the floors but as Diana is coming over on Sunday I've decided to delay that until Sunday morning as everything will be covered in muddy paw prints again if I do it now.


Smirnoff has become even more loving this week, he very nearly sat on my lap last night but in the end settled for being half on and half off. Every night when I get home from work he sits on the bed as I'm changing out of my uniform and 'chatters' to me. This change in behaviour is very strange but very welcomed and has helped enormously in dulling the pain of Tarmac's loss.

It is now only three weeks until my cousin arrives from Australia and I'm getting more and more excited. I'm pleased to say that I have even managed to get some time off work. I originally applied for the whole four days as a block but was refused. So I've applied for one day at a time and have so far got two individual days for that week granted. Why they have allowed me two individual days instead of a block request of four I have no idea but clearly getting leave by stealth works. And who am I to argue? I'll be trying for the other two next week.

I am currently watching Masterchef the Professionals and loving every minute of it. I did despair though at one of the skills tests. Remember these are professional chefs who do this stuff for a living. The test was to make a gnocchi, basically little potato dumplings made with flour and egg, and a sauce to serve them in. Now I buy mine for convenience but have made them in the past and will do in the future if it is a special occasion. Never once have I got myself in the sort of mess these chefs did. Not one of them got it completely right and one was so awful the judge has to spit it out. However this sort of programme is right up my street and I love seeing the beautiful designs they come up with. Some plates of food look more like works of art and it's pity to eat them.

Another programme that was right up my street was last night's lecture by Prof Brian Cox about the science of Dr. Who. The subject itself was fascinating but did we really need various celebs to take part in experiments? Did we? Although I enjoyed the programme I have to say I prefered Brian when he was in D:Ream.



However my second favourite programme of all time starts on Sunday. Yes, I'm A Celebrity  is back! As yet I've no idea who is going to be in it this year, and frankly I'd like to keep it that way as I love surprises. So for the next three weeks, between I'm A Celeb and Strictly, I'm going to be one very, very happy lady.

Well my delivery is here so I'd better check it and then I'm off to tackle Tesco, joy!

Sunday, 10 November 2013

Strictly Remembrance

I woke up this morning and enjoyed a quiet hour with a cup of tea and the papers before indulging in a bath bomb. I'm now more or less set for the day and smelling delicious, if I do say so myself.

So what's in store for me today? Well apart from the usual ironing and getting ready for work tomorrow, not much. The sun is shining and I did consider a bit of gardening but it is so cold out there and the ground is really wet so I don't think it is going to happen. However I might just manage, with some help, to trim back the brambles that have started to take over. It is very nice having fresh blackberries growing in your garden but they do not compensate for the prickly little blighters popping up everywhere.

I've decided that if I don't have my transplant over the winter I'm going to get a man in to get the garden back into shape as I can't stand it anymore and Peter and the boys can never spare more than a day at a time. It is going to take at least a week of intensive work to sort it out by my reckoning, something even post transplant I won't be able to do on my own.

Yesterday we had a lovely lazy day in and watched a film while sipping on wine and nibbling on crisps. I love these sort of stay at home days. I find them really relaxing and it's just nice to spend time alone with Peter. We don't get much of that as when we are both off we usually have things we need to do.

Today is Remembrance Sunday and along with millions of other people across Britain I will be silent for two minutes come eleven o'clock. I read in the paper that some are calling for the end of ceremonies, such as the Cenotaph parade, as there are not that many left who can remember the wars. Really? Well my mum remembers it all too well as she live through it. I will admit that a lot of the men and women who fought in the war are no longer with us but it wasn't just their war. What about the children they left behind, did they not experience the war too?

Also Remembrance Sunday has become more than just a service to remember the two world wars. It gives the nation the chance to remember all those who have died in conflicts that have come after these wars. Now you may not agree with what has happened in Iraq, Afghanistan or the Falklands, I certainly don't, but surely our anger and disgust should be reserved for the politicians who sent out troops into war, mostly on lies at that, not for the brave men and women who are dying because some egomaniac thinks he's God. As long as there are soldiers dying in the service of our country I think the Cenotaph ceremony, and the hundreds of others across the country, should stay. It is just one day, what is the harm?

Strictly Watch

Has Bruno got something personal against Hairy Dave? His attack was so vitriolic and so personal I thought it was completely out of proportion to what happened during the dance. By the shock on Dave's face and the gasps of the audience they all thought so too. Dave did ballroom this week, which meant he was in hold, which meant he got better scores. All the other judges, including the acerbic Craig, saw improvement. So what was wrong with Bruno? Maybe his corns were pinching.

With the weekend being without a 'theme' we could all get back to the business of dancing. And I have to say I found it a lot more enjoyable than last week. Everyone seemed to have upped their game apart from poor Mark, who got a roasting from all four judges and looked suitably crestfallen.

There were two people missing this week. One was Sir Bruce, who was taking a scheduled break, one of two this series, in order to get ready for next week's visit to Blackpool's famous ballroom. The other was Natalie.

We were told that she was taken ill in dress rehearsals and would not be taking part. Mmmmm highly suspicious in view of rumours that she is unpopular with viewers and could well have ended up in the bottom two this week. Unfortunately there is something unlikeable about Natalie. She is too good and far too smug about it. I also think having someone like Natalie in the show, where she is tipped to win from the first week, makes for a boring show as proved by last night. Without Natalie the fight for top spot was on and how well they fought. However, having said all that I wouldn't want Natalie to have to leave through ill health. I hope that whatever ails her is not serious and she returns to dance again next week.

So back to the others. I was so impressed with Patrick, who rightfully claimed top spot. Suzanna, Abbey, despite that awful wig, and Ben also shined for me. The person who is no longer impressing me that much is Sophie. She is impossibly laid back and although that works well in the Charleston, for example, for dances that require a bit of fire in them she comes over as 'can't be bothered'. If she doesn't pep herself up at bit I can see her heading for the bottom two.

So top for me, well it's obvious, Patrick Suzanna, Abbey and Ben.

In danger of the dance off, Mark, who has lost some of him mojo recently. Hairy Dave, just because he wasn't quiet so funny this week, and Fiona, more for Anton's mistake rather than hers. Though I would like to see Anton reach December as I don't think he's ever made it past Blackpool, has he?

Back to work tomorrow so next blog Friday.

Saturday, 9 November 2013

Carpet Wars


Well that was very strange night indeed.

It started off well enough. We had pizza, watched some TV, went to bed, read a book and then went to sleep. The problems started around one when I sat up in bed shaking. I'd just dreamt that I was in hospital and being prepped for surgery. I could see every detail of the theatre, and the nurses as clear as day. The problem I had was I had no idea how I'd got there and couldn't find my phone to alert anyone. For some reason I was there on my own and convinced no one knew where I was. I began to panic and the nurses tried to assure me that they would let my relatives know if I'd just lie back and let them get on with their job.


Of course that was the end of my night's sleep. Every time I closed my eyes the panic welled up again and I was back in that theatre. Now it could have been the late night pizza that was to blame or just being on the waiting list messing with my head. Either way it is going to be a rather subdued Saturday.

Our trip out shopping was fun. As you know we have redecorated our bathroom but we are still at logger heads over the new flooring. We agree that we want vinyl rather than ceramic tiles, which would be too cold or carpet, which would be permanently damp. Vinyl would be warm underfoot, easy to clean and easy to lift should any problems occur needing access to the pipes under the floorboards. The sticking point is the colour. The bathroom is pale, dare I say it, almost clinical in appearance. No problem there, I like the clean crisp look, but it does look rather cold. So I'm looking for a rich russet red to add warmth, and match the towels. Peter is rather taken with black to add a modern contrast, so the discussion is still ongoing as neither of us has found exactly what they want yet. It has been going on for so long now that I suspect the first to do so will get their way as we are both rather fed up.

Yesterday we decided to bite the bullet and go looking for a solution. We didn't find one but we throughly enjoyed the trawl through various DIY and carpet shops. On the plus side we found, both liked, and bought some gorgeous tiles for the cloakroom, next on the spruce up list. Then we spent around half an hour debating whether a vinyl tile was russet or brown. I maintained it was brown but it is always difficult to tell under shop lighting. Unable to agree we left it. So with Dunstable exhausted we are moving on to the north side of the county next week.


I am giving Pizza Hut one last chance as in fairness I didn't send my letter of complaint until the Saturday so if nothing arrives today I will be composing a second letter. I'm just in the mood.

I bought Smirnoff a tin of sardines as a treat yesterday and the greedy little boy ate the whole lot. He is now sleeping it off under the bed in the spare room. Peter's delighted as it means he isn't on the desk bothering him and is urging me to do the same next week.

It is dull and wet outside and once again I'm frustrated at not being able to sort out the garden. Every time we have a lovely sunny dry day we have something on. When we both have time on our hands it rains. Rotten English weather! Next weekend I won't care what it does because my friend Diana is popping over for a gossip and a cuppa. We haven't seen each other for a few months now, we've both been busy, and I miss her.

My booking form for next year's PH conference is all filled in ready to go, all I've got to do is buy a stamp. I know it is a bit of a risk booking something so far ahead. Who knows what the next six months will bring. However I'm willing to take the risk as my new motto is not to put off doing things because you will only live to regret it. If my transplant happens before then, well maybe I will be on the road to recovery so will still be able to attend. If it doesn't then I won't have missed out on anything.

Tonight it's Strictly Come Dancing and I've heard some rumours that Hairy Dave is being encouraged to throw in the towel so that better dancers don't get chucked out ahead of him. How unsporting! It is not Dave's fault that the nation loves an underdog. And why should he fall on his sword? Yes there are better dancers than him but they are so dull. I much prefer to watch someone trying their best and making small improvements than watching someone who has found it easy from the start and doesn't improve. I know! I know! It's a dance competition, but if you want competitors to be judged purely on their dancing prowess don't use celebrities. If you do then you have to put up with it being a bit of a popularity contest. And to be quite honest if Dave and Mark leave then it will be a duller competition.

In the news I was grabbed by a story from my home town Aberystwyth.



Now Aberystwyth is a coastal town and therefore is know to be a little, well, windy. In fact I have never know Aber to have a day without any wind. So you would think it was one of the perfect places to put a wind turbine. The Welsh Assembly certainly thought so and erected one costing 48k near their officers in the town. The only problem is that the offices are as far away from the coast as you can get and still be in Aberystwyth. It is also in one of the most sheltered parts of the town. They were warned that it would not be in the right position but went ahead anyway and up it went. Now it has been revealed that this monstrosity is generating only an average of £5.28 of electricity a MONTH! You couldn't make it up.

Well time to relax with the paper and a cuppa before lunch. It is cawl today and it is simmering away in the slow cooker. As always I'd prepared it last night and planned to turn the machine at around seven this morning, no problem as Peter is usually up as six. However he slept through and the machine wasn't turned on until eight so it will be a late lunch but well worth it.



Friday, 8 November 2013

All Things PH.

Well it is two whole weeks since my disastrous visit to Pizza Hut and not a peep from them. I haven't had today's post yet but I'm not holding out any hope. I think the time has come for a more forceful letter if nothing splats onto my mat later today.

I'm including in my blog today a poster that I think is probably the most effective one I've every seen regarding transplant. It really brings home what transplant is all about is a simple and effective way. See what you think.

Following my mention of the world record in yesterday's blog the organiser, and driving force, behind the attempt contacted me to say they are thinking of going for another record in 2014. This is fabulous news, nothing better than a world record to raise awareness and keep PH in the public conciousness. I'm already planning what I'm going to do. If it goes ahead I have no doubt you will hear through the various PH supports groups but if not watch this blog, and I will keep you updated with progress and with details of how you can take part. Unfortunately I was quite poorly during the attempt last year and so couldn't go out and do what I wanted to do. This time around I'm hoping to be well enough to do a lot more.

Day by day Smirnoff is becoming more and more affectionate. He hasn't reached Tarmac levels yet but he's getting there. He follows me around the house and 'chatters' to me with a variety of mews, clicks and whistles. I worry that he is lonely but I am reluctant to introduce new kittens as I think it would be all out war.

The pain of Tarmac's passing has diminished enough now that I can remember him with a smile and laughter and yes, I have been thinking of the future. I saw a friend's cat on Facebook and though it had a lovely sweet face and I found myself considering the possibility of getting a similar animal. At the moment though it wouldn't be fair on Smirnoff or any new kitten to introduce a new cat now. I would be looking for a Tarmac replacement and I know I would be very disappointed if the new kitty did not have some of Tarmac's character. Smirnoff is just getting used to being a single cat and is obviously unsettled so I don't want to add to that.



Yesterday I spent a good deal of my time on the phone trying to change an appointment at the Brompton. It is such a pity that a hospital with such wonderful medical staff is so badly let down by the incompetence of their administration staff.

My original appointment was for the 27th December, approximately three weeks before my appointment at Papworth on the 17th January. My appointments have been approximately three to four weeks apart since I went on the list. It works very well because Papworth get all my latest test results before they see me making it easier for me and for them as nothing has to be repeated. So when a letter arrived cancelling my December appointment and giving me a date of 24th January I got on the phone. It took ten minutes to get through to the appointments clerk who was less than sympathetic. After a long discussion and at least two explanations as to why I needed an appointment before my Papworth date she decided she couldn't help. So I was passed to the PH secretary who wasn't in. I left a message on the answer phone explaining my situation and hung up not expecting much. Lo and behold I got a call back about an hour later from someone who totally understood where I was coming from and said she would sort it. She also offered to rebook my ECHO as that was also on the 27th. Just goes to show sometimes attitude is everything.


While writing this blog the post arrived. Nothing from Pizza Hut so watch this space.

What has arrived is the booking for form next year's conference. Now so far, for a variety of reasons, I've never been able to go. I've either had something else on, been unable to get time off or been ill. This time there is no clash and I no longer work weekends so the only fly in the ointment is my health. I'm being optimistic and sending my form in by return of post. Fingers crossed again.

Oh well I'd better get my glad rags on, or at least get out of my PJ's and prepare for the hell of the weekly shop. If someone ever invents a self filling fridge I'd be immensely grateful.


Thursday, 7 November 2013

Pulmonary Hypertension Awareness Month

November is the month that many charities choose to raise awareness and money. So it is no surprise that along with Movember, when men grow their mustaches for cancer charities and the BBC holds it's Children In Need night, the PH charities have also chosen this month to raise awareness.

So what is PAH (Pulmonary Arterial Hypertension)? Well those of you reading this blog because you have it or know someone who does could probably recite the description word for word. However for those who are a bit vague here is the official description as seen on the Pulmonary Hypertension Association website.

'Pulmonary hypertension (often shortened to PH) is a serious condition where the blood pressure in the pulmonary arteries is high. This causes progressive damage to the heart and lungs.'

• Pulmonary Hypertension or PH is where the pressure in the arteries in the lungs raises putting pressure on the heart. It reduces the amount of oxygen in the body causing severe breathlessness, dizziness, fainting, chest pain AND blue lips.
• It is very often misdiagnosed as Asthma. It is a rare, relatively unheard of, incurable disease affecting only about 4000 people in the UK.
• It can be controlled if it is diagnosed early enough but sadly half will die if they are not diagnosed within 2 years.

It sounds so benign doesn't it? Doesn't have quiet the same impact as 'cancer' or even 'pneumonia'. There is no hint of the devastation it causes or the fact that there is no cure. I admit that when I was first diagnosed I was so terrified that I might have cancer, I've never smoked but like most students spent hours in smoky pubs during my youth either drinking or working, that when they told me it was PH I thought 'is that all?' I was totally unaware of how it would slowly erode every aspect of my life. Being told that I was unlikely to make my fiftieth birthday, I was forty seven at the time, was a huge wake up call. Slowly the PH did it's worse. Exercise was the first to go. I was very active, swimming, running, weights, I admit to being a bit of a gym bunny. I was told to stop lifting weights immediately as it raises your internal blood pressure and mine was high enough. Gradually swimming and running went to the wall as my breathing became more restricted. Then the walking began to suffer. I was fine on the flat but the mere hint of a slope and I puffed and wheezed like an old steam engine. Now I can't even make to to the post box at the end of the road. In short my PH is now so severe the only thing that will save me is a transplant.

Although my old life was being steadily taken from me a new one, and maybe even a better one, started to replace it. I became a campaigner. I went to parliament to argue for better recognition and funding for PH with MP's. I took on NICE when they threatened to stop paying for our much needed medications. I took on the airlines charging ridiculous amounts to allow us to have oxygen on flights. And I appeared in local newspapers and on local radio. Of course it wasn't just me. Lots of us took part in these campaigns and I'm pleased to say for the most part we were successful.

Most of this I've documented before in past blogs. However what a lot of my friends and family will not know is that I am also a world record holder, me and thousands of others that is. In 2010 we launched our biggest campaign ever. One of the main symptoms of PH is dark blue lips due to lack of oxygen in the blood. We took this negative and turned it into a positive by setting the record for the most individual blue lip prints ever collected. The attempt involved smearing your lips with blue lipstick, kissing a piece of paper and signing it then sending it in to be counted, verified and added to the growing pile. Some of us also sent pictures of ourselves 'Puckering Up 4 PH'. I've included mine here, I know it's ghastly but it was for a good cause so don't have nightmares.

The official count took place on Friday 18th February 2011 at a school in Bury. It was organised by one of the teachers there, who had lost her sister to PH. Officials from Guinness World records were also in attendance, as was Dr Chris Steele from ‘This Morning’ who is a patron of PHA UK. I am delighted to announce that we collected 54,949 blue lip prints worldwide, which broke the old lip print record by 15,000. A wonderful achievement!!! Nearly 55,000 more people are now aware of PH!!. Not surprising then that the symbol for this month's awareness campaign is a pair of blue/purple lips.

So strangely having PH has enhanced my life. Without it I'd never be part of a world record. I'd never have attended the houses of Parliament except as another tourist. I'd never have had the courage to speak out for something I really believed in. And most of all I would never have become friends with some truly wonderful and inspirational people. PH has changed my life and there is no doubt that I'm not the person I once was. I'm kinder, more patient, I value my family and friends more and I've gained an inner strength I'd never have thought possible. Yes I wish I didn't have PH, I wish I'd never heard of it truth be told but in the end it has made me who I am now and that is a better person.

For more information on PH and to see how you can raise awareness, money or just support those with PH visit the PHA website. Link below.

http://www.phassociation.uk.com

My thanks to Jane Taylor for the additional information regarding the definition of PH and for the facts on the World Record both shamelessly copied from her post. Thanks again Jane.

Wednesday, 6 November 2013

A Birthday To Remember.

Well I did it! I made it to my fifty third birthday and so my new goal is to see my fifty fourth.

Sadly lightening didn't strike twice and I didn't get a repeat of the call I got last birthday to hot foot it to Papworth. To be fair it was a long shot but where's there's life there's hope as they say. I'm now caught in a bit of a dilemma. I'm desperately hoping to have the transplant before Christmas, however my lovely Australian cousin is coming over at the beginning of December and I'm desperate to see her again too. The only good thing about all this is the decision is completely out of my hands.

It was an interesting birthday for a lots of reasons and most of them not good. I've been angry, sad and stressed. So I've written off my actual birthday and have decided to make today my happy day.

It all started on Monday night when someone posted that they had got 'the call' from Papworth. Naturally there was a flurry of excitement and then we all settled down for an anxious wait for news. Although I was delighted at the news, especially as they had been waiting for so long, I was very sad for me because I knew it would be unlikely I would get the call that night as it is unheard off for two transplant to happen at the same time.

The following morning this person was back on Facebook posting as though nothing had happened. They did not answer texts or messages and the question arose as to whether 'the call' had actually been made. It was decided that someone had told a big fat porky pie and having spoken to a couple of people who know this person in the flesh it's not the first time this has happened.

Now I'm not against the odd practical joke and I'm aware that sometimes things can be posted in the heat of the moment that causes someone else great upset. Good Heavens, I've done it often enough myself. However there are some things you just cannot mess about with and transplant is one of them. No wonder there was such a bad reaction. A lot of very ill people had a restless and anxious night because of that post, some waiting for 'the call' themselves. The person concern claims a further post was made saying it was a 'no go' but no one I've contacted saw such a post.

I was so disgusted I couldn't wait to get home to delete this person from my contacts. Now I may be being a bit unfair as I don't know this person at all well. We've never met and have not really built up any relationship online, we just got talking due to our both having PH, and some people have even cast doubt on them having that. Having said all that I have found some of their posts more than a bit strange and contradictory so deciding I could do without someone like that in my life we are friends no more.

Yes I am an idiot and yes I do buy Hazel nuts just for him and his pals.

At work I decided enough was enough and gritted my teeth and dealt with a problem that I really wasn't willing to put up with anymore. That problem is now someone else's and I can't expressed how relieved I feel finally, after two years, getting it all off my chest.

Also at work I've made the first tentative steps towards early retirement due to ill health.

Now the original plan was to hang on in there until my transplant and then return for at least a year while I retrained. However with my health now failing a little more rapidly realistically I'm not going to be able to do my job for much longer. Couple that with all the uncertainty of whether we will still have jobs this time next year and I think the time has arrived a little quicker than expected.

This last year I've had to use oxygen to enable me to walk from my car to the office, which really isn't very far. Inside the building I'm having to use it more and more to get from my office to the canteen. If I can I try to make it without as I don't like to feel different in a place I go to in order to feel normal, if that makes sense. However even with the oxygen I'm beginning to struggle and when I don't use it I really feel it. My biggest fear is ending back in the wheelchair. I hated the fact that one of my colleagues had to collect me and take me to and from my car. I know they didn't mind at all but it made me feel awkward. Then it was just a temporary thing while I waited for my Flolan to be started. This time it is likely to be permanent, at least until transplant, and I just don't want that.



I'm giving myself until Christmas to consider all my options, I'm working over Christmas, and don't want anyone to have their time off spoiled by being directed because I've thrown in the towel, so I will do my shifts until then. That will give me time to think and discuss things with my family and friends and work out my finances. Come the New Year, with a clear head and hopefully a resolution to my problem and an idea of how safe my job is, I should be able to make the right decision for me. This of course is all provided I haven't had my call by then.

So maybe not the birthday I would have wished for but it has made me face a few very unpleasant things and do something about them. However as my mother always says the nastier the medicine the better it will help you. I just hope she's right.

Strictly Watch

I know this is early but I just wanted to say, what the hell happened there?

I'm afraid the wrong two were in the dance off this week and poor Rachel knew her goose was cooked when she found herself up against Abbey. Though to be fair I did think Rachel's days were numbered. I don't vote for these things but if I did I'd be wondering whether it was a fix by now. Hairy Dave and Mark are wonderful characters, they are fabulous to watch BUT at this stage of the competition the are expected to dance. I dread to think what will happen next week.

Well time to relax in front of the TV. We are having a Chinese take way for lunch so no cooking for me today. As they say, things can only get better.


Sunday, 3 November 2013

Strictly Not Scary At All

The trip to Tesco was a success and I made it around on my own two feet, albeit rather slowly. With that in mind I'm planning to return to work tomorrow. I'm only in for two days this week anyway so it will be a good test.

I went mad in the fruit and veg aisle and spent the afternoon making soup while sucking down smoothies as though my life depended on it. The end result, which was gobbled down at teatime, was delicious and I've included the recipe in this blog in case anyone wants to give it a go.

Although technically not Bonfire night until Tuesday a few decided to celebrate early and the bangs and whooshes soon sent one very nervous cat scurrying downstairs. However instead of diving under the table he got up onto the settee and pressed himself up against my leg. With a reassuring hand on his back he stayed calm and content, only jumping at the loudest bangs. Of course the weather helped as it was wet and windy and so a lot of official displays had been postponed. I have a feeling it might be a lot noisier tonight.

Smirnoff behaved rather strangely, for him, this morning too. I was dozing as it was not yet eight o'clock and I don't sit up until at least half past on a Sunday. Suddenly I felt the unmistakable movement that heralded a cat walking up the bed. As it was Smirnoff I thought he was just going to sit on my bedside table and stare at me, as is usual. Not this time, he stood on my chest, meowed at me and then tried to pull the covers back with his paw. Just like Tarmac used to do. What is going on? Either he has become possessed or the fact that Tarmac was so protective of me made Smirnoff think getting close to me just wasn't worth the risk of a fight. Either way it is a delightful development and I'm hoping he will eventually sit on my lap of an evening.

Today I'm taking it easy and eating some good stuff, including more smoothies and soup, in order to build my strength up for tomorrow. I'm going to struggle with the early start but it has to be done. I just wish I had more energy.

I don't normally share things on facebook, well I do if they are transplant or PH related as the more awareness I can generate the better, but things like motto's funny pictures etc I don't bother with. However one I picked up yesterday, and replicated in this blog, got me thinking. I have had a lot of pain, both physical and emotional, in my life. I've done some things that I really wish I hadn't and I've hurt people along the way, but having said all that I am proud of who I've become. There are people out there who don't like me. There are people out there who actively hate me but that is life. I've been really down this past week but I am, for all my faults, a positive person and for that I will be eternally grateful.


Ok, here is my Super Scrumptious Tomato Soup, veggie version in brackets, enjoy. Excellent for using up left overs

you will need...
1 medium onion roughly chopped.
1 medium carrot roughly chopped
1 stick of celery roughly chopped
1 - 2 slices of bacon chopped
1 oz butter
Approx 750g very ripe tomatoes quartered
2 teaspoons tomato puree
1 pint water plus vegetable stock cube
bouquet garni
freshly ground pepper

In a heavy based pan put the butter, onion, carrot, celery and bacon (if using) and sweat down over a medium heat for 5 - 6 mins until onion just starts to turn translucent. Add pepper (and if not using bacon a good pinch of salt) and sweat for a further minute.

Add the tomatoes, water, stock cube, puree and bouquet garni (for a more vegetable version you can add some peppers, sweet potato, pumpkin or butternut squash here). Put on a tight fitting lid and turn heat down to lowest setting. Cook for 1 hour stirring twice to ensure veg do not catch on the bottom.

Remove from heat and allow to cool for thirty minutes with lid on. Remove bouquet garni and now you have a choice. For a clear soup pass soup through a sieve pressing ingredients to ensure all the liquid is removed.  For a thicker, more robust soup whizz up using a hand held blender until smooth. Serve with crusty bread, croĆ»tons, grated cheese or for a really indulgent treat a swirl of double cream. Makes enough for six. Excellent for freezing

Strictly Watch

I have to say I found last night's show a little bit predictable and, dare I say it, dull.

It started off well, the opening dance by the professionals offered a lot of promise for things to come. Tess was wearing a lovely dress, and the judges had made a bit of effort. I particularly taken with Bruno's spider. However it says it all when I say that the most entertaining moment of the night was Bruce calling Darcy 'Dave'.

The costumes were great, all except Sophie's that is. The red cat suit was brilliant but what the hell was that thing around her waist? Dreadful! However the dancing did not live up to expectations. It's getting boring now to say that Natalie was the best, getting the first tens of the series, followed by Abbey, Suzanne and Patrick. Ashley and Ben are quickly catching up though, with Ben using his muscles to distract from what his feet are doing. Fiona and Anton looked really good and I thoroughly enjoyed their dance but the judges were quite right, it wasn't a Charleston.

Also not dancing what they were supposed to were Hairy Dave, no surprise there, and Mark.

I was surprised and disappointed with Mark's efforts. Although he usually manages to inject a bit of humour into his performances he also usually makes a good fist of the actually dance too. Last night nothing worked for him. His costume was all wrong, emphasising his girth, would you have guessed he's lost over two stone? No, neither would I in that outfit. There was an attempt at the paso but it was very weak and I found the whole thing irritating.

Also irritating was Hairy Dave. Now as you know I've been right behind him so far but after last night's performance I'm no longer sure he deserves to be there. It is all very well relying on you fan base week after week but it's getting to the stage now where better dancers are leaving when it really should be Dave. Yes he's funny, yes he is having the 'time of his life' but the time has come to make more of an effort to grasp at least some of the steps. On the other hand the powers that be are not exactly playing fair with Dave. He is clearly much, much better at ballroom and yet week after week he's given Latin. And yet all the others seem to alternate. Maybe Hairy Dave is right and he has been included as the 'light relief'.

Top three Natalie, Abbey and Suzanne. It goes without saying everyone is expecting Natalie to win, including me, and that is why it has become suddenly so boring. It is no longer a race for the top spot but who comes in second.

Bottom three Hairy Dave, Mark and Fiona. I think it's going to be Dave and Fiona in the dance off and If so Dave will go, but I've got it wrong before.

Have a happy and safe Bonfire night. Next blog Wednesday.




Saturday, 2 November 2013

Feeling My Age

Was up really early this morning, four thirty to be precise. I'd like to say it was because I got 'the call' but obviously not as I'm sitting here typing this.

Unable to sleep I staggered downstairs made myself a cuppa and settled down to watch some TV. The next thing I know is Peter delivering a hot cuppa and realising it was half past eight. Clearly not the most restful night ever.
I blame yesterday's lack of activity. Both of us feeling under the weather we stayed in, pulled the curtains and watched a film and crap TV, only taking time out to fetch another snack or drink from the kitchen. I grazed on raspberries, blueberries and bananas, he on grapes, crisps and Bombay mix. Despite the coughing, sneezing and wheezing it was just nice to spend a day doing nothing together.

This morning we are both feeling better, though both are still coughing for Wales, and have decided to brave Tesco. Well we had no choice really, we've eating all the treats and I really need more fruit. For me it is also a little test to give me some idea about my fitness for work on Monday. It is all very well saying you are feeling much better when you can still doze in front of the TV all day and your only activity it lifting the kettle. Sitting at a desk answering phone calls, making quick decisions and lasting for eight hours straight is an entirely different kettle of fish. For me a trip to Tesco is a good progress marker. Our local one is quite small so if I have to go around on my scooter I'm too ill for work. If I can make it using oxygen then I'm not quite there and need an extra day or two. And if I make it around on my own two feet then I'll probably be OK. Not exactly scientific but it works for me.

I braved the scales this morning and found I'd only dropped a pound in weight so that cheered me up too. My appetite continues to improve and yesterday's fry up of fried bread, egg, bacon and beans really hit the spot. Sometimes you need to be really naughty to give yourself a lift. Today's effort is a bit better, barbecue chicken with peppers and rice, but I'm also planning a raid on the treacle puddings, can't get enough of them at the moment. Another reason for the Tesco trip.

I am 'twitchy' at the moment. I have that feeling that something is going to happen soon and it is a feeling I cannot shake.

On Tuesday I hit my fifty third birthday. This is an age every doctor I've seen since 2007 has assured me I would not reach. At forty seven I was told I'd be unlikely to reach fifty. At fifty I was told I would not make fifty two without a transplant and yet here I am, days from fifty three and still kicking. Everything good or bad always happens to me around my birthday. I'm nearly always poorly on my birthday for instance, though it looks as though my timing was out this year. On my fifty second birthday I was in work, again getting over the remnants of a cold, when I get a frantic call from Papworth asking whether I could attend for assessment in an hour. I was originally given an appointment for the beginning of December so the call was completely out of the blue. I did baulk at going to be honest, I've spent far too many birthdays in hospital. However, having been rejected by Harefield I just couldn't bare the wait to find out my fate at Papworth so agreed. Despite spending my birthday being poked, prodded and having enough blood removed to feel faint it was well worth it. The following day I was given a tentative 'yes' provided the surgeon agreed to the risk. Six weeks later I saw the surgeon, a lovely man, who talked me through all the risks and agreed the transplant could go ahead. I was so relieved and excited I did a little dance in the waiting room, which of course nearly killed me. Three days later I was officially on the list.

I remember leaving the hospital. having signed all the consent forms, with a feeling of expectation. I was convinced I'd be back in there in a week or two and would be spending my next birthday, this birthday, climbing Snowdon.

Since my last birthday my world has fallen apart on several occasions, most recently this week, but each time I pick myself up and dust myself down and just keep going. Sadly each time it gets a little harder, a little more difficult and one day I won't be able too do it anymore. My current medication is beginning to be less effective. The new medication is more or less the same stuff but the dosage will be increased slightly with the hope that the downward slide will be slowed or hopefully halted. However the clock is ticking and it is ticking a few seconds faster each day. Dear God, please let this birthday be a good one.

Friday, 1 November 2013

Least Haunted

Well what happened there?

Not one call at our door, in fact not one call at anyone's door as far as I can tell. Where there used to be hoards of kids beating a path to our door, this year the streets remained quiet. There was just no one about.
Peter thinks the lack of pumpkin might have been to blame, possible but that doesn't explain the empty streets. My theory is that the growing belief that 'every stranger is a paedophile' is the most likely cause. The growing trend is for Halloween parties where overanxious mothers can keep a firm eye on their little darlings. This suits me fine as it means less and less pensioners will be terrorised in their own homes. However what's good for the elderly doesn't translate as good for the kids. We are in serious danger of breeding a generation incapable of distinguishing safe from danger because they've never had to work it out for themselves. Why not let your kids out trick or treating but go with them? Sounds like a simple compromise to me. Let the kids enjoy the thrill of knocking on strangers doors in the dark while mum or dad watch from the pavement ensuring no bad behaviour on either side. Or is that too simple?

I am feeling a lot better and my appetite has returned. By eight last night I was ravenous and so tucked into a treacle toffee pudding. Pure comfort food I know but as I have barely eaten all week and am supposed to be putting weight on I think I can be forgiven. I'm currently working on the 'eat what you fancy' principle and so for lunch we are having a rare fry up. Amazingly I don't appear to have dropped any weight but I must admit I'm avoiding the scales, at least until I'm eating properly again.

Emotionally I'm also doing well. I managed a whole day without tears. I did have a wobble though when Svet presented me with two little toys she'd made herself. One was clearly a 'Tarmac' the other a 'Smirnoff'. They are now taking pride of place on my bedside table and the little black and white one got a cuddle when I went to bed. To be honest I'm not as sad about Tarmac as I thought I'd be. Now the shock has worn off I know I made the right call and I'd been expecting it. After all a year ago I was told he had weeks but I got almost a whole year extra and 99.9% of that was in good health.

The other comfort is Smirnoff who seems to be taking over where Tarmac left off. Although he did not sit on my lap last night he lay pressed up against my thigh and allowed me to stroke him. This morning he stalked up the bed and sat on my newspaper, something Tarmac used to do if he thought I was dawdling with breakfast. Last night Smirnoff sat on my bedside table and watched me read. Now I don't know whether Smirnoff is missing Tarmac. He must know something is different because he isn't being bounced on by a Tarmac wanting to play. Unfortunately Smirnoff always took these advances the wrong way and it would end in a fight with Tarmac looking confused as to what he'd done to offend. Who knows what Smirnoff's feeling but he certainly knows something is different.

It is a week now since my trip to Pizza Hut and as yet I have heard absolutely nothing. I'm giving them until Monday and will then follow up with an even angrier letter. I might even mention 'newspaper' in the text and see if that provokes a reaction.

Today I received my information pack on my new drug 'Veletri'. It looks a lot less complicated to make up then the Flolan and has made me want it even more. I had to laugh at the 'how to do it' DVD though. As if I didn't know how to wield a syringe after two years but I guess some will be going straight onto this drug so it sort of makes sense to include it. January seems an age away.


This weekend Strictly do their Halloween show and having watched a few of the 'It Take Two' programmes on BBC 2 I think it is going to be brilliant. For a start Hairy Dave is doing the Jive, which will be an absolute joy. I can't wait!



So I have a bucket of sweets to get through and Jesus Christ Superstar to entertain me, the double cassette also landed on my doorstep this morning. Settee, here I come!