A Day Of Firsts

I know this sounds strange for a former IT teacher but I've always been scared of the modern phones. The touch screens terrify me as I've never really felt comfortable with them.

However the time has come to upgrade. I'm on pay as you go at the moment and while that is fine in the normal course of events, if something out of the ordinary happens, such as going into hospital, my costs are enormous. My bill from being in Papworth was £57 and when I was in Brompton for two weeks last year it was nearer the £100 mark. The Internet is so expensive I don't actually use it, so for the first time in my life I'm going with a contract. I also get a new phone. The one I've plumped for is the Samsung Galaxy Ace Plus which comes with free insurance, 600 mins, 1GB of data and unlimited texts all for £10 per month. As I regularly spend £15 - £20 a month now just on texts this seems like a good deal to me. So I've taken the plunge and hopefully will get on well with it.

I am going out with some friends from work this lunch time. We are all meeting at a pub to celebrate my friend Steve's new job. This is the first time I've ever been out with people from work, not because I don't want to but because these things are usually at night which makes it difficult. I must say I'm really looking forward to it. And I have the privilege of acting as chauffeur to the guest of honour.

Over the last day or two there have been calls for people to post more on the official PH website forums.

While I would support this move I can't help thinking that the moderators on the official site have brought this lack of posting on themselves. It used to be a really good forum where you could ask anyone more or less anything related to PH. Then people started to object to the graphic content of some of the answers saying that some readers would be upset, scared or worried by what they read and we should more or less sweep the nasty bits of PH under the carpet. I and several others objected to this restriction sighting the facts that if people didn't want to know the answers they wouldn't be asking the questions. Also that it was better to be up front about the nasty bits as it meant no lulling people into false hope and them ending up having a nasty shock.

Unfortunately the moderators seemed more influenced by the vocal minority, isn't that always the case, and started issuing warnings, removing posts and then banning people. All extremely inappropriate behaviour for a forum supposed to be helping and supporting people through a terminal illness. I mean come on! How can you talk about a terminal illness without mentioning 'death' for heavens sake! Then they switched systems and everyone was removed from the members list and had to re-register only instead of just filling out an online form the registration process involved a moderator ringing you and quizzing you to establish your motives for joining. All I'm trying to do is join a forum love, not join MI5.

The result is that membership has plummeted and there are very few people around to help newcomers. A classic case of using a sledge hammer to crack a nut if you ask me.

Strictly Watch

Oh my goodness! I was right for once, Victoria has gone! I think I'll have to have a lie down in a darkened room.

Right got to go and get ready, time to party on dudes.

Sunshine On A Windy Day

Well despite all dire warnings we seem to have escaped the worst of the weather and I awoke to bright sunshine. I treated myself to a long, hot bath and then got a burst of energy and changed the bed linen, towels and gave my drug prep table it's weekly deep clean. What a way to start a Sunday!

My weight gain mission is still reaping rewards and this morning I'm 7 stone 8 pounds or 48.2 kilos so another gain but only two pounds this week. Still I am moving in the right direction and my target of eight stone doesn't seem that far out of reach now. I have had a couple of 'sick' days though where I felt really nauseous and couldn't keep much down so I shouldn't be too surprised that I haven't gained much.

Coming home last night I was cold, hungry and tired and really couldn't face cooking so I stopped off  at Domino's and bought three medium pizza's, spicy beef and tandoori chicken, ham and pineapple and a margarita with extra tomato and onion for me. I never buy fast food on the way home so goodness knows what got in to me. I wolfed mine down before even changing out of my uniform and spent the rest of the evening feeling bloated and uncomfortable but I kept it down.

The last few days have been a real mixture of highs and lows but mostly have involved stress.

Work has been busy, mostly because of the weather and my home life hasn't been much quieter. With no hospital visits or tests lined up for the next four days I am hoping to relax and have some fun. This afternoon I will be watching the last Grand Prix of the season and then will catch up on I'm A Celeb and The Apprentice as I've haven't been able to watch either yet. It was only a miracle that I got to see Strictly last night. Monday I'm going out to lunch to celebrate a good friend finding his ideal job and then I can put my feet up and relax for the rest of my break.

Andrew goes back to uni today ready to start his placement tomorrow. He is both excited and nervous but I'm sure once he's in the back of an ambulance, with a patient, racing towards a hospital on blues and twos, he'll soon get over it. He is based near Twickenham Stadium and crews often attend matches so if there is a match on and someone gets injured over the next three weeks, it might well be my boy rushing onto the pitch.

Strictly Watch

Is it me or has Strictly lost some of its momentum?

Last night wasn't exactly riveting and, apart from Nicky's Charleston, the dances were far too controlled and therefore dull. We have a lot of good technicians this year but unfortunately few of them are good at 'getting into character'. I'm still routing for Louis and actually thought his dance was a lot better than the judges gave credit for. Poor Victoria was reduced to tears, again, and even Lisa seemed to loose some of her sparkle. I think she could well find herself in the bottom two this week, along with Michael or Victoria. If people actually voted for the dance rather than the personality then it should be Victoria going home as she is by far the weakest dancer left. It won't be of course, and if it has to be someone good then I hope it is Denise.

W

Rude And Ungrateful

Home early from the Brompton for a change so a quick update.

Arrived after a quick and pleasant trip ten minutes early for my appointment at the clinic. When I got there the receptionist asked if I'd attended my ECHO appointment. What ECHO appointment? I hadn't been told anything about this but apparently I'd been booked in for nine, two hours earlier. It seems that ECHO thought the clinic were going to notify me while clinic expected the ECHO department to do so. Another appointment is being made and I'm assured I will be notified. I will not be holding my breath.

So with that little crisis over I was weighed and had the usual tests done before being packed off to see Carl, my Nurse Specialist. We had a good long chat and ironed out a few little problems and agreed to leave the increase in dosage for another month or so to give me a chance to put some weight on for transplant. Of course the proviso was that if I suddenly started to go downhill then I was to contact him immediately and we might have to revise that decision. I am happy with this as, although I do feel I've slipped back a bit, I'm not ill, ill, if you know what I mean. I can still do things, it just takes a bit more effort. I was then passed to Lisa, the other Nurse Specialist for a walk test. This is basically to see how far you can walk in six minutes and how the walking affects your oxygen levels and this is where the real fun and games began.

Lisa had a new oxygen sat reader which she popped on my finger at the beginning of the test to get a base line. To everyone's amazement it showed a reading of 97%! I haven't had a reading that high for years. She took the machine off my finger reset it and this time it read 89%. So off I went, up and down the corridor while Lisa shouted encouragement and time checks. I was three minutes in when I started to flag and by four minutes I had to stop and lean against the wall to get my breath back. I did the last two minutes at snails pace. My oxygen levels at the end were 79% so quite a drop.

We were sitting, chatting while I got my breath back and Lisa wrote up her findings when another patient interrupted us. She was a rather large lady, heavily made up and very angry.

"I going out for a fag."

I was rather taken aback by this statement as I couldn't imagine why anyone with PH would want to risk further problems by smoking. However she wasn't finished there and launched into a tirade.

"I hate that Doctor! He's bloody useless. He told me that if I didn't start loosing weight I may as well go back to smoking so that's exactly what I'm going to do."

She stormed off leaving us and everyone else within hearing range completely gob smacked. All that because someone had dared to tell her to loose a few pounds, how ungrateful! These doctors are some of the best in the country and if one of them told me to loose weight I'd do it, not get all upset and use it as an excuse to carry on doing something else that was bad for me. I know this will offend some people but I honestly believe that if you have PH, or any other heart/lung problem for that matter, and you smoke then you deserve everything you get. You also shouldn't be using a service that is doing its best to keep your life as normal as possible when you have no intention of lifting a finger to help yourself.

We saw this woman outside as we left and judging by the number of butts at her feet she'd indulged in more than just one 'fag'.

We called in on the Ace Cafe on the way home for a mug of tea and a bacon butty, delicious, and then hit the motorway and then stopped. The overhead signs were flashing telling us that there were long delays between junctions 14 and 18. Dismayed we struggled on until junction nine and then bailed off to continue our journey on the A5. We put the radio to catch the traffic news to find out what was going on and were bemused when they announced that the M1 was running normally.

Once home a letter was waiting for me, it was the results of on of the extra tests I've had to get done for transplant and much to my relief it was normal. Another hurdle crossed.

So after all that I'm quite tired now so I'm off to spend the rest of the afternoon with my feet up on the settee catching up on some TV recordings.

Next Blog Sunday.

A Weighty Issue

Yesterday's chores passed off a lot quicker than expected as we whizzed around in record time. So I was soon on the settee, feet up and cup of tea in hand, which is just as well as I've started to experience painful calf muscles if I walk any distance. I've had aching legs before and my specialists said it was because my blood cannot keep up with the oxygen demand walking requires, so if I walk too far or too fast my muscles get oxygen deprived and protest. I was halfway around Tesco, feeling good so without trike, when I got the worst cramps ever. I could hardly stand and whimpered pathetically as I clung to the trolley until the feeling passed. I've asked other PH suffers about this and got a range of possible answers but most seem to blame the Flolan. I've got an appointment at the Brompton on Friday so I'll check it out with them.

It was Warfarin clinic today and so another painful encounter with a nurse who just didn't care. She resisted all attempts at conversation and jabbed the needle in as though she were stabbing an insect. The look she gave me indicated that any complaint would be ignored.

While waiting I was both amused and shocked when a fight almost broke out over a wheelchair.

Sitting quietly reading and generally minding my own business I was suddenly jolted from the drama on the page by the drama taking place in the doorway to the clinic. In the door frame, stuck fast was the biggest wheelchair I've ever seen. Sitting in it was the biggest woman I've ever seen. The chair was at least double the size of your average one and was sturdily constructed out of what looked suspiciously like steel girders. This lady was accompanied by two other females of not un-similar proportions who were busily trying to ram the chair through the gap taking paint and splinters of wood off with every push.

The commotion soon drew the attention of the receptionist and the clinic sister who rushed over to help and calmly unlocked the other half of the double doors to allow the chair through. Having inspected the damage the ward sister turned on the trio and berated them for a) not sending one of the more mobile ladies in to get help and b) not trying to undo the door themselves rather than cause so much damage. Their reply was astonishing as in broad American accents they hit back complaining how everything in England was so small and everyone so rude.

The farce continued when they tried to park the thing in the clinic. Everywhere they put it they blocked a corridor and prevented patients and nursing staff from moving freely around the clinic. In the end the sister politely suggested that the lady in the wheelchair got out and sat on the ordinary chairs (to be honest she'd have needed three at least and the chair be folded up. This was not a suggestion welcomed by the trio and another argument ensued. In the end one of the nurses came out into the waiting room and took this lady's blood sample just so they could get rid of her. Needless to say those of us who'd been waiting half an hour or more were not best pleased to witness this blatant bit of queue jumping but were also heartily thankful to see the back of them. I do hope they are not going to become regular customers.

On reflection this might have been the reason I was stabbed with such vigor, it was nothing personal, they were all just well and truly pissed off.

So Friday sees the dreaded trip to the Brompton. Normally I don't mind the regular MOT to see that everything is ticking over nicely. However I know this is going to be a tricky one because they are going to be anxious to keep me in the best possible health for my transplant, while I want to put on weight, also for the transplant, and know that the two things are not compatible. Sure if they increase the drug I will get used to it and will feel better but it also mean weeks of nausea and vomiting, which is something I really cannot afford at the moment. I'm sure we will reach a compromise though, we usually do.

I'm A Celebrity Watch

We have the first leaving, and as with most years it is due to illness rather than the vote off. This year it is Brian who has bitten the dust and been removed due to a 'mystery' illness. A recovering alcoholic with a history of depression, concerns about his emotional state were raised early on in the week when he broke down in tears after a spat and then had a rambling row with Rosemary over nothing. Hopefully whatever it is he'll be back on form, but sadly not back in the jungle, soon.

Helen reaped the rewards of two successful trials and did not get voted for the last bush tucker trial. Is it just me or, despite her cheer, did she look a tad put out? Anyway the public have turned their wrath on Hugo, who to be fair has been acting like a big baby of late. Rosemary hit the nail on the head when she said he was used to getting his own way and threw tantrums when he didn't. We will see just how much of a baby when the trial takes place on Wednesday. Naturally it can't happen tonight because the show is making way for football. Does this annoy anyone else? The show is only on for three weeks a year and we have already lost two days for football. If I ruled the world I'd make it illegal, not football, just forcing it on everyone.

Well off to enjoy the last free afternoon before back to work tomorrow. Next blog Sunday.

Stuck In The Puddle With You

We made Rusden by two complete with new radiator strapped to our roof rack. It was another lovely drive though, with blue skies and barely a whisper of wind. The only thing that spoilt the experience was the whistle of the radiator, which had the tone and volume of the whistle you get on steam engines.

After unpacking the boot of all the tools, I was ensconced on the settee with a cup of tea, biscuits and the remote and happily watched Star Trek and Crocodile Dundee while trying to ignore the banging and swearing coming from the bathroom. However despite predictions and a few minor hitches things went relatively well, and although we were there longer than predicted, and had to mop up a small puddle or two, we were all packed up and heading home by six. Leaving a very happy boy, which I assume is still the case as we haven't had any panic stricken phone calls.

The temperature had dropped significantly by the time we headed home and on some of the minor country road dipped as low as 2.6C. The weather was still clear and dry though so we made good time, as there was very little traffic about, and were soon home where I made sandwiches and tea while Peter unloaded the car.

Andrew arrived much later than predicted and was freezing cold and heavily laden. He confirmed that he was here for most of the week as he had several assignments to do which he was finding difficult in his digs. His room mate, who has not changed his bedding since he arrived, is either always asleep or crashing in and out making it difficult to concentrate. So it looks like despite living in the same house, we won't be seeing much of each other except at meal times.

Showing a previously unknown spark of common sense he has already done a dry run from his uni to his placement station and although it is fairly straightforward he will have to get up at around five in the morning to make the run and will probably not get back until nine. On the plus side it is a four on, four off shift pattern so he will have plenty of recovery time in between.

This week is going to be a busy one. Not only will I be working but I also have two hospital appointments, including one at the Brompton on Friday. There were plans to up my meds but I don't really want to do that now I've started to gain weight. On the other hand if I don't do the increase I might start having more problems. I'm finding it to be a real worry. If I go with the increase I'm likely to undo all the good work of the last week plus more and end up taking time off work, again. If I don't do it my breathing will get worse and I will feel worse than usual and will end up taking more time off work again. Arrrggghhhh! Why is this illness so flaming complicated? I just can't seem to ever come out on top, just when I think I'm getting a grip on it something else comes along to slap you down. It's exhausting both physically and emotionally, I am just surprised that suffers of PH are not all basket cases.

Strictly Watch

I just knew I shouldn't have made an predictions as I got it wrong again. At least Louis escaped, much to Flavia's surprise given her reaction. In fairness Richard has been teetering on the brink for some time now and despite being funny and extremely entertaining he's dancing was beginning to lag behind so it was the right decision. With so few left now the competition is beginning to heat up and I suspect we will see a few shock exits over the next few weeks. So time to predict the top three, Denise, Lisa and Louis would be my bet so they are all likely to go out over the next three weeks, watch this space.

I'm A Celebrity Watch

Talking about competition heating up I'm beginning to suspect that Helen has been playing a little game.

For the last week she has failed every task, ensuring the public keep voting for her and causing friction in camp. Now the time for the vote off has arrived and the camp decides who does the trials. Little Helen has realised that this means her time is running out. She will never get chosen to do any of the tasks and the public are most likely to vote her off early as apart from boobs and screaming she doesn't contribute much.

So a different Helen emerges and by some miracle get all twelve stars. Anyone else think she might be a better actress than we've given her credit for? Suspicious or what? Predictable she got chosen for the live trial and the old Helen re-emerged as she cleverly gave the public a 'show' and her camp mates some meals ensuring all were satisfied.

As far as the other contestants went, because believe it or not there are eleven others in there with her, well they are not only desperate for food.

Nadine has upped her hug fest and appears suddenly behind anyone getting a little heated. Her bear hug on Rosemary looked like an attempt to strangle, possibly because Rosemary is also getting more air time than she is. Hugo is becoming a pain as he begins to act like a spoilt 'posh boy'. He cries at a drop of a hat, is moody and sullen and totally unappreciative of anything anyone does for him. Despite having the first meal in days he moaned about the quality as it wasn't 'at a standard he'd even contemplate eating normally'. What on earth does he expect? Five star dining? I was with Rosemary all the way when she had her little rant about him. Colin and Ashley are relentlessly chirpy while Eric and Brian have got the old geezer act down to a tee. As for the others well I'm hoping we will actually get to see more of them over the next week or so. First to be voted off, Helen, please, please, please.

It is shopping day today, it is also drug delivery day. Told you it was going to be a busy week.

Computer Says 'No'.

Well yesterday really was forced time in front of the TV. Just after I posted my blog the Internet went down and didn't return until 1900 by which time I was engrossed in Strictly.

To pass the time I watched Willy Wonka and the Chocolate Factory and will never watch it again. Apart from the very creepy lead character it was a very strange moralistic tail and I really did not enjoy it at all. To pass some of the time I change the bed, did all my laundry and gave the kitchen and the bathroom a clean. I resisted vacumning as Peter was home and would have moaned at me. He knew exactly what I was thinking though and announced he planned to do the floors sometime this weekend.

You don't realise how much you use the Internet until you haven't got it. Being my first day off after four long working days I had loads to do, banking, shopping, arrange a few things for next week etc, etc so roamed the house like a caged animal, frustration just isn't the word. However it is back this morning and as long as it stays up until lunch it can do what it likes in the afternoon because I won't be here. Laurence has a plumbing problem so we are going up to help him fix it. As I am useless at all things DIY it will be another afternoon in front of the TV interspersed with trips to the kitchen to make cups of tea to keep the workers fuelled. Peter reckons it should only take about an hour to fix, which from experience means we won't be home before midnight but hey ho, what can you do?

Unusually I'm seeing both my children today, though not at the same time.

Andrew's placements start next week which means no lessons. Somehow or other he has no placement time at all during the first week so he is coming home in order to write his assignments up in peace and quiet. He's doing three sets of four day shifts. The first is on 26th in Isleworth so quite a journey from his uni in Hatfield, especially with a 7am start. He's really, really looking forward to it though so I don't think the early starts will phase him in any way.

There was a moment of blind panic early this morning when the phone went at around two. Peter slept through it and by the time I'd untangled myself from the bedding and line (I always end up with my line twisted around me, I don't know how), the phone had stopped. I still got up and checked the answer phone but no message. I lay awake for a good half hour wondering who it had been but in didn't ring again so I concluded it must be one of the late night drunken mistakes we sometimes get or a bloody PPI salesman who couldn't work out the time difference.

Strictly Watch

I was not impressed by Wembley night, the dance floor was too big and the crowd to loud.


Lisa was back to her big, mouth always open, frantic style while Denise annoyed the hell out of me by ruining one of my all time favourite songs. It was supposed to be 'Walk Like An Egyptian' but was barely recognisable and I found it so distracting I hardly noticed the dance at all. As you all know by now I really cannot stand this woman and it leaves me in something of a dilemma because I do like James and would really like to see him win, just not with smug, self satisfied Denise. I was disappointed with Louis and Flavia, their dance just lacked something this week, while Nicky and Michael both showed improvements again. I hated Victoria's dance.

So bottom two, well after last week it is going to be really difficult. I'd like to see Denise in there just to pull her down a peg or two but it is unlikely. Much as I hate to say it I think Louis might just be in there along with possibly Kimberley or Lisa. However I am most probably going to be wrong, again.

I'm A Celebrity Watch

OK, I am past wanting to drown Helen now, I just want her to walk out and disappear.


Last night's attempt at a trail was the most pathetic ever. She started panicking before she even left camp and it went downhill from there. As she walked off to meet Ant and Dec (who are the best thing about this show ) her camp mates sagely resigned themselves to another day of rice and beans.

Once in the clearing it took the boys all their efforts to actually get Helen to put the goggles on. They even managed to get her in the cage and onto the wheel and for a brief second I actually though she might give it a go. She didn't and after refusing to do the trial declared, to everyones bemusement, that she'd given it 100%. Even Ant and Dec, usually achingly diplomatic, could hardly keep the look of disgust off their faces.

Back in camp Helen immediately went on the offensive. After cheerily announcing that she had come back empty handed she started accusing Charlie of giving her 'looks'. She got even more annoyed when Eric asked her why she was there. A reasonable enough question, given the circumstances. Helen then retired to the video shack and sobbed that hr camp mates 'hated' her. Helen my love, they probably do, in between discussing how you would taste with a little rice and beans.

Someone who is disliking the situation even more than Helen is Nadeen who, from her reactions, had rather banked on getting all the trails and therefore most of the air time. So Nadeen has taken to hugging Helen whenever possible just to get a little share of the action.

Tonight's trial will be done by.............Helen. Rice and beans it is then.

Progress?

Well, well , well, who'd have thought it? I seem to have had some early success in the battle to gain a few pounds. My weight today 47.7 kg or 7st 7lbs, thats a gain of four pounds! My six small meals a day, several full cream hot chocolates, Complan and diving for a boiled sweet every time I feel queasy seems to be working. I've kept almost everything down and the results are there for all to see. At this rate I should reach my target weight in another couple of weeks. I have an appointment at the Brompton on Friday where increasing my Flolan will be discussed. I'm going to resist as I don't want anything messing things up.

Talk about a busy week! Is it a full moon or something because calls have been more numerous, weird and wonderful than in the previous week or so. Needless to say I am shattered but happily so as the time flew by and I quite enjoyed myself. Today I'm going to spend mostly on the settee catching up on all my recordings and with three reality shows going all at once plus my usual soaps that is going to take some doing.

In the news the Police and Crime Commissioners have been voted in by a minority turn out, less than 10% in some areas and one polling station in South Wales didn't get one voter through it's doors. How shocking is that! Of those that did bother to put pencil to paper a higher proportion than usual chose to spoil their vote so most Commissioners have actually been elected on a less than 10% vote.

So where did it all go wrong? Well the £75 million it took to set up did not include a budget for advertising the event. Leaflets were in short supply and although there was information on the Internet the website address must have been a state secret. Research shows that in elections such as this it is likely to be the older section of society that votes. Not everyone has access to the Internet or indeed wants is. A vast proportion of the elderly population do not trust it. Anyone think that by making information on candidates only available online might be missing the target audience? Well if you do then you are more on the ball than those that arranged the election. Interviews with various members of the public on the news channels showed that the biggest reason they did not vote was lack of information. Hopefully someone will take note or there may be more polling stations like the one in South Wales next time.

One last point, if these elections were supposed to be non political why do most of the candidates appear to be affiliated to political parties?

Apprentice Watch

Another show, another less than sparkling performance from either team.


This week's task was buying props for an opera company. Things did not get off to a good start when neither team could even pronounce Candelabrum let alone know what it was. If they had twigged the word 'candle' then they might have also got a handle on the other mystery item, 'Votives' basically candles to go into the candelabrum. They constantly asked people if they new that a candelabrum was but the pronunciation returned a series of blanks.

After a dismal showing by both teams Platinum lost, but only just, and Amy, who took over from Maria as most shouty female was gone.

I'm a Celebrity Watch

There is a fine line between being entertaining and being irritating and actress Helen Flanagan has past the line by miles. 


After a week of watching I have developed a soft spot for Colin, cast an admiring eye over David, pegged Charlie as a possible winner and would like to hold Helen's head underwater. Surprisingly I think Nadine has come across as quite level headed and a bit boring, she does carry a rather smug air about her though which grates a bit. The others haven't really stood out yet, well except Hugo who had another mini breakdown after failing a rather simple task. This series is warming up nicely and I can't wait for the next show.

Strictly tonight, I'm going to be spoiled, especially as the husband has returned home with chocolate filled doughnuts.

Well time to start getting lunch together, gnocchi with tomato and basil sauce topped with melted mozzarella, gorgeous.