What's New Pussycat.

Here is a warning for anyone who has cats but loves scented candles. I was in the living room practising my relaxation and had lit my lavender scented candle when my lovely Russian Blue cat Smirnoff wandered in. Before I could stop him he had jumped on the table and tried to sniff the candle. There was a squeak and he took off up the stairs like he'd been shot. Fortunately Andrew was sitting at the kitchen table studying so he went upstairs and brought Smirnoff back down. A quick but thorough examination revealed no damage except for some missing whiskers. I have used many scented candles, insense burners etc in the thirteen years Smirnoff has been with us and he has never tried to sniff anything before. I've no idea what possessed him to sniff this one. From now on the candle will be put in a place Smirnoff cannot get to though I doubt he will try to do that again. Poor pussy, lost his dignity until the whiskers grow back but at least it wasn't more serious.

Plucked up the courage to ring my mother yesterday anticipating some fallout from my sister's visit but no she was perfectly OK, mainly because she hasn't yet seen my sister. So another week passes without me having to act as peace maker, lovely.

Off to the Warfarin clinic again this afternoon so a chance to see how my needle phobia therapy is progressing. I am having to bribe one of my son's to come with me this time though. The problem with my local hospital is parking, there is no access to any part of the hospital by car so whichever car park you do use leaves you with a good long walk. The cost is another matter. It used to be £2.50 for four hours now it is £4 for three hours though they do give you the first twenty minutes free. Whoop-de-doo, fat lot of good that is when everything is at least a ten minute walk away. As a result of the hospital being more interested in money than its patients, my husband always comes with me and drops me off as close to where I need to be as possible then goes and finds some street parking nearby. After I've finished at the clinic I call him and he returns to pick me up. Today Andrew came with us as I cannot walk even the shortish distance to the clinic this arrangement offers. The place was packed with OAP's as usual and we had to tuck ourselves into a corner so that the old biddies wouldn't trip over my wheelchair. I usually draw some curious looks as I tend to be, at fifty, one of the youngest there. Being youngish and in a wheelchair meant that I was suddenly the focus of attention as some openly discussed what could be the matter with me.

When my name was called Andrew expertly weaved his way through the forest of walking sticks and into the cubical. I offered my arm and the nurse tied a strip of rubber around my bicep, this is when I usually start hyperventilating but today I was perfectly calm. The needle was produced and I remained quite calm, it was only when the needle was in and blood was being draw that I started to feel a bit panicky. A definite improvement though it has to be said the nurse remembered me and used the smallest needle she could find. Nevertheless I was quite pleased and am looking forward to building on this development in future sessions.

Read some sad news today regarding a fellow PH sufferer. Dan has had a Hickman line for the past ten years and has been fairly well on it but now, as it tends to do, his PH is progressing and the line is no longer enough. In February Dan went for an assessment to have a heart/lung transplant where he was told that he was far to well for transplant. He went for another assessment recently as his health was deteriorating and this time was told he was too ill for a transplant and would die on the table if they tried. How can this happen? Surely one or other of the assessments must have been wrong in the first place for there to be such a difference in a couple of months. Dan is refusing to give up and is doing what he can to get as fit as he can in the hope that they will assess him again and change their minds. Dan also has a blog and it can be found using the Joey Pouch link to the right of the page. Hoping you win the fight Dan.

Dying Is Easy, It's Living That Scares Me To Death.

This is the kind of post that is going to have my 'fan club' in a frenzy. They will complain that I don't think of others and will scare people with my comments. Well before they start I'd just like to remind them that it is difficult to be positive ALL the time. Having PH is not a 'pick and choose' situation where you pick out the best bits and leave the bad bits brushed under a carpet. This is real, it is happening to me and if you don't like what is being written DON'T READ IT!

Everyday I wake up and say to myself only a few more days and I'll get the call/letter. Just a few more days. Today I've allowed myself to consider the other scenario. I've been keeping myself motivated by believing that I will get the treatment and it is just a matter of time. But what happens if the PCT turns me down? It could happen. I've been through so many medication changes this last six/seven months that they might just turn around and say no, no more. What then? Straight to transplant I suppose but that is such an unpredictable area. I might be lucky and get a donor within weeks though it is more likely to be months and there is always the reality that lots of transplant patients never get a donor. How would I cope with that? It is difficult enough knowing I'm going to have to be like I am for the next couple of weeks but what if this is it, this is how I'm going to be for the rest of my life? And how short will that life be? I'm not ashamed to say I have thought of death, who hasn't, and dying doesn't scare me though the idea of remaining this ill or worse terrifies me, what would be the point? Not many people know how they will die, some have a good idea, such as cancer patients and of course PH patients. We know because we feel the disease attacking us every day. They say those that know are better prepared. I beg to differ, I am not and do not want to be prepared, because even in my deepest despair there is still that little spark that will kick and scream until the end. And that and nothing else will keep me believing that I will get better. Pathetic isn't it how even when the odds are totally stacked against us we still believe we will win in the end.

I've started to have problems eating because I cannot breath and when I do eat there just doesn't seem to be enough room. I'm living on fruit juices, soup and cups of tea at the moment. I keep craving Subway tuna melts or sweet and sour chicken from my local Chinese, when I'm better I'm going to scoff like mad but until then all I can do is day dream. Yes I could order a take away in but it would just be a total waste of money as after two bites I'll be pushing it away feeling uncomfortably full.

Another problem I'm having is with the stairs, I just cannot do them anymore. Peter keeps offering to carry me but he's not as young as he was and I worry about his back. I let him when I'm really, really bad but I don't like it, I keep imagining both of us ending up in a heap at the bottom. Laurence isn't always available either so I tend to go up backwards on my backside, last night it took me half an hour to do the twelve steps to the bedroom. Peter kept coming out and saying 'let me carry you woman.' I kept shouting 'I'm going to bloody well do this on my own,' which of course didn't help the breathing situation. I got there in the end but was totally wiped out. I'm giving in tonight because I just cannot fight it anymore.

To get me out of the house Peter took me for a swift push around Tesco to buy some strawberries and cream so I can pick at them while watching TV tonight. While there we witnessed a heated argument following a car park prang, which was quite amusing. We didn't see the accident itself but it looked as thought either one car had reversed straight out of a space without looking or the other had tried to get around them while they were reversing out. In the end we had to reverse and go up another aisle as the argument looked as though it was going to turn into something of an epic. Peter parked and went into the store to borrow a wheelchair for me, and while he was gone an old bloke appeared by the car next to me and gave me the dirtiest look you've ever seen. I suspect he was just about to have a go at me about parking in a disabled space (and yes I was displaying my badge) when Peter returned with the chair and plonked me in it. This old bloke was also parked in a disabled bay, with a badge, but I couldn't see any reason why he should need a disabled badge and he was on his own so he wasn't parking there for the benefit of anyone else. Now for all I know he could have had a hidden illness just like me, it is not for me to judge. I assume that is someone has a badge then they must need it for something, so it really pisses me off that others think it is their devine right to question my entitlement.

It has rained constantly today which has added to my feeling of gloom. Although I am really pleased my garden is finally getting a good soaking I'm sure sitting out in the garden in warm sunshine would lift my mood considerably. Let's hope the sun returns soon and I can get back to being able to see the funny side. 

Saturday Night, Sunday Morning

I've had an automated response from Halfords which states.

'Your e-mail is important to us and we aim to respond as soon as possible. We currently aim to respond and resolve your query within 5 working days.'

So not that important then. Realistically as it is a bank holiday weekend I really wasn't expecting a reply until Wednesday but I think five working days is pushing it just a little bit.

It has been a difficult day today. I was wide awake at four this morning with no idea why. I don't remember anything waking me, my breathing wasn't too bad and all seemed quiet outside. As I lay there wondering whether to get up and make myself a drink or just lie there hoping I could drift back off again I hit on the brilliant idea of doing my relaxation exercises. I started off by staring at my hands(a bit tricky in the dark) to 'warm' them, no idea how/why this works but it does, then clamped them to my chest in my best Egyptian mummy impersonation and the next thing I knew is was nine o'clock and I was very, very late with my meds. Rats, the one thing I really should not be doing right now is sleeping through my medication timings. I didn't feel any worse for doing so but it has been a bit of a pain re-arranging all the timings throughout the day to insure I get all the doses I'm due. As it is my last dose is now scheduled for eleven thirty tonight so it is going to be late to bed. I just hope there is something decent on TV. One thing I will be doing from now on is setting my alarm clock  so this doesn't happen again. Husbands can be very unreliable alarms on Sundays.

Watched the Grand Prix, it was quite exciting for once and I was on the edge of my seat willing Button to overtake Alonso and Vettel to take the lead when Petrov decided to plant his car in the wall. So close, I could have screamed.

After such bitter disappointment I went for a quiet potter in the garden to see how things are doing. A combination of the weather and my health have prevented me from making this short expedition for the last four days so I was pleased with how things have grown. My tomato plant has five sets on it now and is still growing. The sweetpeas are making a break for it and have started to climb the canes but the Clematis is not doing as well as I'd hoped. It has never really recovered after it was trampled by an unknown intruder a week or so ago. All I can do is watch and wait.

Getting so bloody frustrated now. I've become an avid watchers of every possible crap daytime TV show going. My current addictions are Neighbours (they are all so clean and yet I never see anyone doing any housework), Judge Judy, Bargin Hunt and Cash In The Attic. I haven't descended into Jeremy Kyle territory yet but feel it is just a matter of time. I can see me having withdrawal symptoms when I eventually make it back to work. I seriously need saving from myself. I have solved the communication problem now though. I have taken to texting my husband and son's if they are upstairs and I need something doing downstairs. Expensive but effective. It took me a whole day to work that one out, seems the brain is now following the body and going into meltdown. Help!

Pave Paradise, Put Up A Parking Lot

What are disabled bays for? Why are they put right next to the doors of shops etc? Answer, so that people with disabilities can access those stores without having to walk very far. Simples right? Well not according to Halfords, Dunstable. Here they are in place so that a small tent can be put up where a mechanic (and I use the term loosely) can sit under it waiting to install car seats, radios etc, etc. The tent covered two of the three disabled bays outside the store (the third bay being occupied by a car without a badge) while just a few yards further down there was a whole raft of mother and child bays standing completely empty. When the disabled bay to mother and child bay ratio is one to three wouldn't it make more sense to pitch your tent in the mother and child bays instead of in the only two empty disabled bays? Maybe its because mothers with babies are more able and more likely to kick up a fuss? After all if you are disabled and cannot access the store you cannot complain. Or better still why not use a couple of ordinary bays just opposite the doorway, which were also standing empty? That would not annoy or inconvenience anyone.

My husband went in, after parking in one of the empty ordinary bays opposite the shop, and tried to find someone to complain to. After being ignored by the various teenagers on duty who seemed more intent on arranging their social lives than actually serving customers he gave up and returned to car without buying anything. 'If they cannot bother to speak to me then I cannot be bothered to shop there.' Which to be fair is only the gist of what he said, he actually said a lot more than that for quite a few minutes. I am not going to let it lie and have e-mailed Halfords head office with a lengthy complaint and a picture of said tent attached. I'll let you know the result. Honestly, if the shop owners insist on misusing this facility what chance have we got against the usual dunderheads?

I'm shattered after yesterday's trip out so spent the day relaxing in front of the TV. Watched the qualifying for tomorrow's Grand Prix. I've driven around the circuit at Monaco so this Grand Prix always reminds me of good times, I absolutely loved that holiday. Caught my breath when Perez crashed into a barrier. Motorsports fans are accused of only watching in the hope that one of the drivers will get hurt, or even better die. Nothing could be further from the truth, obviously there are some who do watch it for that reason but they are very few. On the whole we watch because we appreciate the skills required to drive just inches from the barrier at up to 200 miles per hour. Like footballs fans we usually support a team but also have favourite players and there is nothing we dislike more than seeing a driver having to be whisked off to hospital after a serious incident. I shall be watching the race tomorrow with fingers firmly crossed than no one else comes to grief.

Nothing on the TV tonight because of some football match, this apparently was part of the reason for the horrible traffic in London yesterday. A perfect opportunity for another film night. Not sure how many more of these we are going to have as a family as Laurence is now actively looking for his first home. This time next year I'll have one gone and another preparing to go. I was discussing this prospect with Laurence who in all seriousness asked me what I would do with all the time I'd suddenly have on my hands. Wouldn't I be terribly bored? I love the way children presume that you will be unable to find anything to do when you are no longer picking up, cooking or washing for them. I assured him that I'd find something to fill in the yawning gap he will leave behind. Personally I'm looking forward to only having to use the washing machine two or three times a week instead of every day.

Retail Therapy

I am feel ing a lot better today. Not so much breathing wise but head wise. As always a good moan has done the job and I'm back to my more positive self.

Off to the Brompton for my therapy session. The roads were horrendous and it took us over two hours to get there but thankfully just as we were arriving I got a text from the counsellor to say she was also running late and putting my appointment back by fifteen minutes. As a result I actually had time to sit in the cafe and have a cup of tea and a flapjack. The session focussed on my needle phobia and she concluded that the fear must stem from when I had my heart op when I was five (not that I hadn't worked that one out for myself) and decided to regress me back to that time to try and find the source of the fear. So I lay on the bed and we did the relaxation exercise and before I knew it I was back on the beach. Then she said a screen had been put up on the beach and next to me was a projector with different clips of important events in my life. She told me that I was watching a movie going back to the earliest days of my life. Well everything was going well until she said I was now watching a movie of myself as a little girl in hospital waiting to have my operation. Nothing, just a total blank, she asked me what I could see and I said nothing, just black. 'How do you feel?' 'Very scared.' We tried to get past the black several time but just couldn't. So she brought me out of it and is now convinced that I was so traumatised by something that I've totally repressed it, all we have to do is find a way of unlocking it. Easier said than done. Anyway during the next week I'm to play the movie everyday during my relaxation time and see if I can remember anything, anything at all which will give us a starting point. I'm not holding out any hope but am perfectly willing to give it a go. Next appointment next Friday.

One thing that has come out of these sessions is the fact that I am not very nice to myself. I never treat myself, never just go and do something for fun. It is true, I only go shopping if I actually need something, shopping for fun is something I don't think I've ever done. Spurred on by the councellor telling me I needed to do something nice for myself every day I promptly went and bought myself a lovely floaty maxi summer dress in cream with roses on it and a lovely tunic type top in a bright flower themed pattern. The only practical thing about them is that they both have wide straps that will cover the Hickman line. While liking the fact that I was treating myself for once, Peter is hoping I don't indulge in this sort of therapy to often or it could turn out to be a bit expensive.

Saw my clinical nurse specialist. She agreed I cannot continue like I am so is going to phone my PCT to try and get an answer Monday . She is also going to chase up the transplant team so hopefully things will start moving soon.

And now I need to ask for your help.

A review of the children's services in England has recommended that Royal Brompton's heart surgery for children should stop. If heart surgery stops at the Royal Brompton, all other services for children will follow. It simply won't be viable to carry on doing them and this will result in a further knock-on effect for adult services too. Please, please, please click on one of the links below to see what you can do to help and to sign the petition.
www.facebook.com/SaveBromptonChildrensCardiacServices or www.thebromptonfountain.org.uk
Thank you.

Life Is A Lemon, And I Want My Money Back.

I'm really sorry but I'm going to have a moan.

Well I had some news today from the DWP about my DLA claim but not what I was expecting. The letter said  'thank you for your claim for DLA. We got it on 14/04/2011. We are looking at the information you have given us.' It then goes on about what happens if they need further information, right at the bottom it instructs me 'if anything you told us about yourself changes you must tell us straight away.' Bloody cheek! It takes them five WEEKS to acknowledge receipt of my claim but they expect me to contact them immediately if something happens that might change my claim. I couldn't believe it so gave it to Peter to read, he soon spotted that the date on the letter was 16/04/11. We checked the postmark which is dated 23/05/11 so where has this letter been? Sitting on someone's desk I suspect. Honestly if private businesses conducted things with such inefficiency they would be bankrupt within a month.

I contacted my PH center today to see if there was any news regarding my treatment, I explained to the very nice secretary that my condition was deteriorating fast and she said she would contact one of the doctors and get them to ring me back. The one thing I will say about the PH service at the Brompton, they are easy to get hold of in a crisis. I am going for my second session with the hypnotherapist tomorrow so maybe they will take a look at me then.

I'm so tired, I just want to sleep all the time. I don't have the enthusiasm or energy to do anything. Everything is too much trouble. I've lost interest in food and am living on tiny portions and cups of tea. I don't know what is happening to me and it is scary. I cry a lot which is ridiculous because it exhausts me and makes it even more difficult to breath.

For once I was left on my own in the house this afternoon. Andrew was taking one if his AS exams, Biology I think, Laurence was at the gym and Peter was out getting my car it's MOT so I grabbed the chance to give my relaxation exercise another go. The trouble is when you are feeling so bad it is really difficult to imagine yourself feeling warm and comfortable so I was on to a loser from the start. I did drop off to sleep for about an hour though so I suppose I did get some benefit out of it. The car passed with flying colours, at least that is one thing I no longer have to worry about.

One of the things I'm really having difficulty with at the moment is getting myself organised. I didn't realise how disorganised I can be until getting up and down the stairs became difficult. I'd get downstairs and discover I'd left my phone on the bed so would trog back up to get it. Then I'd discover I'd left my inhaler in the study so up I'd go again and this would go on through most of the morning, then I'd go through it all again in reverse during the evening when getting ready for bed. So far I have refused to consider a stair lift so the only way to retrieve everything I need/want is to keep asking someone else to get it. At the moment the only way I can get up the stairs is to be carried so you can imagine how frustraing this can be for everyone.

As I've already mentioned I'm off to the Brompton tomorrow for my second hypnotherapy session. I've managed to do my relaxation at least three times but none of them as well as I was taught. Hopefully it will be easier after the second session. We will see. I'm looking forward to it for two reasons it gets me out of the house and I'll be one step closer to losing my fear of needles. It has got to be worth it just for that, right?

Deliver A Letter, The Sooner The Better.

Still waiting for that all important letter from the hospital to give me a date for my Hickman line insertion. I'm getting a bit desperate now. Last night Peter had to carry me upstairs to bed as I couldn't make the stairs even on my bottom. We had a bit of a joke that the last time he did this was when I was plastered but it was still depressing. I have to admit I getting more down and frustrated everyday, even the simplest things are so difficult now and taking my inhaled Iloprost leaves me feeling so drained I have to lie down for half an hour afterwards. It's not right and I've been having a little 'why me' moment today. I regularly rage against God, fate and anything else I think I can blame. It doesn't achieve anything but it does get things off my chest every so often and according to my counsellor that is a good and healthy thing to do. From my point of view it is better than taking everything out on my family. I think my downer must be due in part to the fact that I didn't sleep well last night. I kept waking, gasping for breath and in the end propped myself upright to make things easier. I can't usually sleep sitting up but I must have been really, really tired because I woke at about eight with a tremendous crick in my neck. I've spent the entire day bent over like the hunchback of Notre Dame, so to add to everything else I need a massage to free up my stiff neck and shoulders. Grrr..it's just one of those days.

I'm waiting for news on so many things at the moment. There's the obvious hospital appointment, the DLA claim, which seems to have got lost in the midst of time even though the website says it is still 'processing' and of course my application for Olympic tickets. I check my bank account every few days but nothing yet. Thought I was in luck when I got an e-mail from them this morning but it was only to let me know that they would let me know if I was successful.

Decided to make a better effort at doing my relaxation sessions so with one son in work, another in the kitchen studying for the exam he has tomorrow and the husband in the shed tinkering with something mechanical I wandered up to the bedroom to find bits of computer strewn all over the bed. Undeterred I decided to nip into one of my son's rooms instead, lay on the bed, made my self comfortable and gazed lovingly at my hands which I then clasped to my chest and I did begin to drift, I really did and then this little voice arrived in the back of my head saying 'what shall I cook for lunch tomorrow? Curry maybe?' Before I knew it I was lying there making a list of all the things I've got to do over the next few days. Obviously not what intense relaxation was meant for so I shut the voice up and tried again, this time I was more successful but still didn't achieve the deeply relaxed state I'd been in during my session at the hospital. I might have another go later when the bedroom no longer resembles a computer repair shop.

Bit the bullet today and have hopefully solved the problem of carrying my syringe pump around with me after I get the line. There is site called Joey pouch (the link is on the side of the page) which belongs to a young man who has had a Hickman line for ten years now. He designs bags for all sorts of different medical aids and at very reasonable prices.I've chosen a plain black bag for when I'm at work and a more colourful version for when I'm at home or out and about. I started reading his blog when I found out I was having the line and found his experiences have helped put my mind at rest. It is well worth a read even if you don't have PH as he is truly inspirational.

Car goes in for it's MOT tomorrow, always a worrying time. We always get the MOT done about a month before it is actually due to give us time to get things sorted if it fails. It has never failed yet but it is six years old now so I'm expecting something to have gone, we will just have to see how it goes. Of course, due to my health my husband is going to have to do the honours for me while I wait at home and worry. Will let you know how it goes tomorrow.

Paperback Writer

Blogger has been at it again so many apologies if you've had trouble accessing the blog today.

Today it is exactly two weeks since I was in hospital being told that I need to have a Hickman line inserted. If everything has gone the way the consultant hoped it would I should be getting a date for the procedure any day now. I'm not good at hanging around waiting for other people to do things. I'm particularly bad when I can feel myself getting more limited every day. It is no fun making yourself a cup of tea and then having to sit for ten minutes before you've got enough breath back to drink the thing. My family are doing everything they can to help but my temper is shortening by the day and I've become a bit snappy. I know I should be grateful, and I really, really am but constantly asking if I 'need anything doing', is beginning to get on my nerves. I think it is the feeling of having no control that is the actual problem. It is really hard to explain if you are not in the situation. A lot of my friends have remarked that it must be great being waited on hand and foot. Well yes, if it is your CHOICE, but it isn't mine. I have no choice at the moment and that is the problem.

Visited the Warfarin clinic for the first time in six weeks today and expected a frosty reception but they were all sweetness and light. The reason soon became apparent when I took my seat and spotted a hastily scribble note stuck to the wall apologising because the clinic was running an hour late. I settled down and plugged myself into my music, using only one earphone so I didn't miss my name being called. The eagle eyed recptionist spotted me and barked 'no mobile phones'. I held up my music with one hand and my phone with the other at which point she sniffed and went back to her computer screen. I hate petty rules and regulations. This is a warfarin clinic, the only 'equipment' is the receptionist's computer so why the ban? Of course I turn my phone off when I'm actually having my blood taken, the last thing I want is it to go off and make the nurse jump just as she's sticking a needle in my arm. The reason of course is because my local hospital has signed up to one of these rip off merchants that offer individual TV, Internet and phone access for a 'very reasonable' price of which the hospital gets a considerable cut. In order to protect their profits all other forms of communication have been banned. Nice. I think the next time I get challenged I will point out that two weeks ago I was lying in a bed plugged into various heart monitors and was allowed to use my phone without any alarms going off.

My results showed my INR was perfect, bang in the middle of my range. Hopefully it will be a few weeks before they call me back for another test.

 I don't often blow my own trumpet but I'm quite excited. I wrote a book last year and now it has been published. it is only available in electronic form from Amazon as yet but if sales contiune as they are I will be offered a print option for next spring. It is only a trashy crime/thriller but if you are interested it is called Charter Walk.

Careless Whispers.

Rang my GP today to make an appointment to get my sick note renewed. As soon as I mentioned my name the receptionist vetoed the idea of me 'coming in'.
'How long do you want it for?'
'Don't you have to see me?'
Oh no, we know ALL about your situation. Dr M said if you ring in just to take your details and he'd have a note ready for you tomorrow.'
'OK well thanks, better make it another two weeks then.'
'Any news on when you might be going in?'
'As far as I know they are still waiting for the go ahead from the PCT.'
'Really! I will mention that to Dr. M, maybe he can have a word.'
I hung up feeling rather bemused. Does Dr M know someone on the PCT? Is he a member of the PCT? Who cares, if he can speed things up that is all I need to know.

If you are a football fan you might want to skip the next two paragraphs. Mini rant alert.

The super injunction row has finally penetrated my consciousness and I have to say what a load of codswallop. Firstly let me explain why it has taken so long for it to register. I detest our 'national' game so anything to do with it tends to go straight over my head. I just tune it out. Don't get me wrong I have had the odd knockabout in the park and enjoyed it, the pure form is after all just a ball game. What I hate is everything else that goes with it. It seems todays football is nothing more than an excuse for organised thuggery. Even the footballers themselves are constantly in trouble. Take Wayne Rooney (yes even I've heard of him but for all the wrong reasons). An ill educated overpaid adulterous oaf who by some unfathomable reason is held up as a role model for young boys. No wonder we are in trouble if that's the best role model we can come up with. I can think of at least a dozen better role models who have got where they are by doing what is right, sheer hard work and by being throughly decent people, but of course hard working = boring to today's youth so they haven't got a chance.

Now it would appear these twits want to keep behaving badly but don't want anyone to know about it. Why? It has never bothered them before. Yes everyone is entitled to privacy but not when they are pretending to be something they are not. The only conclusion I can think of is money must be involved somewhere. These men, and we found out who one of them is today, have carefully cultivated their images to boost their earnings through sponsorship and TV deals etc which could come crashing down around their ears if their behaviour got out. They want us to believe that they are family men who adore their wives and children and are kind to animals when in reality they are the exact opposites. After all  family friendly businesses such as Coke do not want to be associated with an adulterer with a foul mouth and quick fists, as Wayne Rooney found out to his considerable cost. God, I bet Colleen gave him stick over that one. As for the WAGS (such an ugly word) well self respect is obviously not a requirement. Any woman who sticks with someone just because he earns pots of money despite his appalling behaviour deserves everything she gets.

Highlight of the day a trip to Costco. Thankfully they supply wheelchairs so for once my boot was left empty for all the goodies. We stopped off at the shopping center first and I hired one of the motorised scooters to whizz around on. I'm getting much better at driving this things now and am a dab hand at reversing out of the lifts in John Lewis. However this one nearly proved very costly. I've been hankering after a pair of skyscraper heels for some weeks now, but have been putting it off because a) I never go anywhere I could wear them and b) if I did wear them my sense of balance is so bad I'd probably break something within an hour of putting them on. Gazing through the shoe shop window at a particularly gorgeous pair with heels so tall and thin it would be like walking on a knitting needle it suddenly occurred to me that I'm in a chair. I don't walk anywhere much anymore so why not get them.I could sit quite happily and stylishly while buzzing around here, there and everywhere without fear of even getting a blister. I was on the brink of going in to try them on when husband arrived and put a damper on things by pointing out that in a few weeks I'll be back on my feet and what would I do with them then. Reluctantly I had to agree he had a point so the shoes remain in the shop much to the relief of my husband, bank manager and skeleton.

No phone call from mother or sister so obviously the only thing to erupt so far this week is in Iceland and thankfully nothing to do with me.

Been feeling quite breatheless these last couple of days. I don't know if it is down to the change in weather, we've gone from hot and humid to wet, windy and cold in the space of twenty four hours. Or whether it is because my condition is getting worse, which I suppose is to be expected until I get the new meds. I'm getting a bit frustrated now to be honest. I hate having to wait around for someone else to get their arse in gear. Please, please, please let there be a letter this week.

Tackling A Tricky Situation

Oh dear, not sure what to do.

Had a call from my sister this morning which is a rather unusual event so I knew instantly that something was wrong. Sure enough she informed me that my mother is causing concern. Mum is going to be seventy five in a couple of months time and up until recently has not shown any signs of aging apart from the obvious greying of hair and spreading of middle. Recently though I have noticed that she has become a bit forgetful. Not remembering things I've told her or repeating things she has already told me. However the developements my sister described are more worrying still. My sister paid her a visit last week, she last visited on Mother's day when nothing was noted as being amiss. On this visit however there was a dramatic change. It would appear that my mother's standards of cleanliness have taken a sharp downward turn and, not to put too fine a point on it, the whole house stank. My sister said it was so bad she had to leave sooner than she planned because the smell was causing her to gag. My mother however seemed totally oblivious. This alarmed my sister and she intends to visit again later this week to try and track down the cause of the pong and, hopefully deal with it. Unfortunately in order to do this she is going to have to say something to my mother and the reason for her call was to ask advice on to how to go about it.

We discussed every possible option available and finally decided that the only way to do it would be to tackle it head on. Our reasoning is that not only would we want to be told if it were us but my mum has always had a fear of 'losing her marbles' as she puts it and has always told us that if we thought she was beginning to act a bit weird to tell her. This stems from a history of dementia in the family. I never knew my great grandmother but apparently she was very awkward and violent towards the end of her life. My grandmother I remember well and can clearly track her dementia. Towards the end she didn't even recognise mum who gave up her job and her chance to go to uni to look after her. I remember visiting my grandmother who had taken against my mother by that time and accused her of throwing my grandmother down the stairs. There were no stairs, she lived in a ground floor flat. We finally persuaded my mother to put my grandmother in a home only a few months before she died. After she died mum made me promise that if she 'went the same way' not to ruin my life but to put her in a home as soon as possible. She also stated that I was to tell her if I thought she was going down the same path.

Unfortunately I am not in a position to travel to Wales at the moment otherwise I'd go down and we'd tackle it together so this unpleasant duty falls solely on my sister's shoulders. I have warned my sister to expect an unpleasant response as despite all the protestaions that she'd 'want to know' the very nature of the condition means she is most likely not to believe it or take it as an attack. Fortunately my sister has nursing training so knows that this is a real possibility. I just hope my mother takes it in the spirit it is intended. For my part I will not be surprised to get an angry phone call from my mother accusing my sister of all sorts of treachery. Not sure how I am going to handle that one, I'll just have to play it by ear, no doubt while having my ear well and truely chewed off.

My sister is feeling better thank goodness and the ulcers in her mouth appear to be healing. She now tells me she is eating three small meals a day and is incorporating fruit juice in her diet. It may not sound like much but it is a huge step forward for her and I'm proud she is making such a positive effort to get better.

Had another go at relaxing this morning. Peter was out, both boys were still in bed so perfect opportunity. I lit my candle, lay on the bed focused on my hands until they warmed up, clasped them to my chest and was just starting to drift off when 'MEOWWWW!' Bloody cat  on the wrong side of the door, again! Maybe tomorrow will be the day. all I can do is keep trying. I must say though I didn't realise how little time I really get to myself until I started to try and take thirty minutes out to relax. This is going to have to change.

Well the world did not end and funnily enough Mr Harold Camping is unavailable for comment. What a surprise! However the eruption of a volcano in Iceland might have temporarily lifted his spirits. The ash could reach Scotland by Tuesday so we could be in for another interesting, and quieter, week.

Die Another Day

Today was supposed to be the end of the world.

According to some 89 year old nutcase the world is supposed to be destroyed by earthquakes and all but the 200 million chosen for redemption killed. I absolutely love domesday soothsayers. This particular nutcase has spent thousands publicising the event and intends to sit and watch it all unfold on TV. Ah, the power of the media. One week you are watching a Royal Wedding, and the next your on the edge of your seat waiting for Armageddon. He has hedged his bets a bit though by saying that it will take until October 26 for the process to be completed. I notice he did not mention which year. There has been a large amount of mockery about this prediction but also some ingenious profiteering and displays of humour as well. Best money making scheme comes from the pet shop owner, who for a considerable fee, has set up kennels to look after the pets of those who believe they will be 'raptured' that's carried up to heaven to you and me. In case you were wondering why this service is needed, animals don't have souls so will have to be left behind, apparently God is not an animal lover. Anyway when interviewed about this scheme the pet shop owner stated that it was a ligitimate service and no, he will not be giving refunds. The humour, and I so wish I'd thought of this, comes from those that have popped out and left small piles of clothing signifying the wearers have been taken on pavements and in parks. Brilliant!

Unfortunately this man has made a similar prediction back in 1994, then he blamed getting his calculations wrong. I can't wait to see what his excuse is going to be tomorrow.

As for me well I'm dying of boredom. The trouble with being so breathless at the slightest activity is that you are rather limited to things you can do sitting down and while spending a whole day in the sun reading sounds like heaven it gets a bit much if you have to do it every day. I do alternate by watching TV/ DVD's and surfing the 'net' but there is only so much of that you can do. I think the boredom is the worst part of being ill. Tomorrow I have the Grand Prix to look forward to, its the closest I'm going to get to excitement for a while. On Monday, if the weather holds, I've asked Peter to talk me for a walk along the river. The cygnets should be out and about by now so with a bit of luck I might get a picture or two.

My supervisor from work came to visit me today. It was lovely to see her and get an update on all the gossip. She brought with her a pot of orange poppies, which will be planted as soon as I can find a nice spot and a scented candle which I'm going to use when I do my relaxation exercises. Unfortunately I didn't spot the candle until after she left so I will have to get in touch and thank her.

Talking about relaxation yesterday I had a go at the technique I'd been taught but couldn't do it. Although both boys were out and the husband was upstairs working I found I just couldn't turn off my ears which were on the alert for any signs of disturbance. Maybe the hypnoses didn't work or maybe it is just a question of practice. I'm going to persevere though and will have another go later on. In the meantime it's back to the book.

Tell Her About It, Tell Her Everything You Feel.

My goodness did we have a downpour on Wednesday, unfortunately the weight of the water has damaged the canes supporting the clematis leaving it lying on the ground so under close supervision Peter had to go out and rig up a support until it is dry enough to get out and replace it. The plant itself seems relatively unharmed but has lost a few leaves.


Had my appointment with the counsellor/hypnotherapist yesterday day. The appointment was originally meant to be on Wednesday but got  rescheduled for Thursday instead hence the gap in blogs. I'm not big on the touchy-feely, discuss you problems with everyone kind of girl. I'm the more the keep it to yourself, deal with it, act as if nothing has changed kind of girl, which my counsellor said made me a repressive. OK, not sure I'm liking the sound of that but decided to go and check this counselling lark out anyway.


Well what can I say. I am totally bemused never having had an experience like it. I went in without any preconceived ideas, which didn't help really as the first thing she asked me was what I wanted to get out of the sessions. The only thing I could come up with was to have a greater acceptance of what was happening to me and to end my fear of needles. She then gave me a questionnaire. I am the questionnaire queen, I just love them so settled down to fill it in and relaxed a bit. The questions really made me think about how I felt, which I expect they were meant to do and after reading my answers she declared that I wasn't depressed. Whoop-de-doo I didn't think I was depressed either so we already agreed on something. 

After a chat during which I felt everything I said was being examined we came up with a plan. First and foremost my needle phobia because she felt that this was causing me most anxiety and was the biggest barrier to my own well being. Once that is sorted we can get on with dealing with the frustration and anger I feel about being ill (this apparently came through in some of my answers to the questionnaire). She decided to start me off by teaching me some self relaxation techniques that I should practice everyday. This apparently will give my body and mind some downtime and will teach me to be 'nice' to myself, and this is where the weird bit comes in.

She got me to lie down on the couch (classic, loved it) and then announced she was going to hypnotise me to make it easier for me to do the exercises at home as being hypnotised will re-enforce the feelings of relaxation. No chance I thought, I am too strong minded you'll never get me under. Her voice is similar to that of Freda in Holby City, if you have never seen Holby City then imagine a very strong eastern block accent. I think she might be Russian but didn't have the nerve to ask. Anyway to understand her I had to listen carefully while she got me to focus on my hands and feel them warming up, do you know they did actually get warmer. Then she told me to put my hands on my chest and tell my heart and lungs how much I loved them and thank them for keeping me alive which was very weird but again my whole chest became very warm. She then told me to close my eyes and think of a warm comfortable place where I felt happy, in no time at all I was back on Waikiki beach watching my husband teach my boys to snorkel while I sunbathed. I could hear the waves and even smell the sea and the counselors voice had just vanished. I felt liked I'd been there hours when I started to count, so I must have still been hearing her but not consciously. By the time I got to six my eyes were open, by eight I was sitting up and by ten I was back in the chair as though nothing had happened. It had all taken about fifteen minutes. She said that from now on every time I relax I will know if I am doing it properly because I will return to that place.

The strangest thing is that when I left her office my breathing was definitely better than it had been going in and it remained so along with the warm feeling in my chest right up until I went to bed. So has it done me any good? Well yes in that I did feel more relaxed afterwards but I don't know if that is just because I was relieved that it wasn't as bad as I expected. Will I go again? Yes, I have another appointment next week as I'm keen to see if she really can help me relax around needles. Do I think it will help me in the long term. I don't know but I'm more willing to give it a go than I was yesterday, so time will tell.

Heard today that an old school mate of mine is about to become the proud dad of twin girls. Congratulations Philip, I hope all goes well. 


Andrew had his first AS level exam today in Maths. Came back saying he felt more confident than he did last time though there was just one question he couldn't work out, sounds promising.


We are all at home for the weekend for the first time in about a month. Looking forward to some family meals and of course film night.

Virtual Insanity.

To my friend Chris whose home town Slave Lake is currently being destroyed by forest fires. My heart goes out to you and your family. Hope all turns out well for you.

I'm about to have a little rant so please bare with me.

Watching the news over breakfast this morning they featured a man who was suffering from liver and another type of cancer, for the life of me cannot remember which. Anyway this poor bloke is having to raise £25,000 to fund his own treatment because he lives fourteen miles, FOURTEEN MILES, on the wrong side of a county border. How, in this day and age, can a seriously ill person be denied treatment just because of where they live? How in any way, shape or form can this be right? I know that cuts need to be made and I understand the reasons why but surely there are better ways of doing it.

This afternoon I was flicking through a magazine in Tesco's while waiting for my husband and came across a story about a young woman who has never worked, has a string of kids from different fathers and was bemoaning the fact that her GP wouldn't put her forward for a tummy tuck and breast lift. The GP had told her that she didn't meet the criteria to have it paid for on the NHS and if she wanted it she would have to pay for it. Astoundingly she thought this was 'unfair' and complained that the GP had ruined her whole life. I was pleased that in this instance the GP saw sense but I am sure that many cases slip through the loop because 'I will never be able to be confident enough to get a job unless I have 36DDD breasts.' Give me a break! The problem is in your head love not in your boobs. Let me say straight away I have no problem with those in genuine need receiving plastic surgery on the NHS but it is an area that really should be looked at more carefully.

Back to the chap with cancer. I was amazed and full of admiration at how upbeat and matter of fact he was about it all. His attitude was along the lines of 'what can you do, that's how it is.' But WHY is it like that and WHY are we accepting it? I know it is a bit of a David and Goliath situation but if enough people did not accept it maybe things would change. I hope he manages to raise the money he needs, I hope even more that his health authority will have a change of heart and agree to fund his treatment so he can have a few more precious years with his family. Unfortunately everyone who has ever been turned down for treatement will know that getting them to change their minds is highly unlikely to happen. I wish him well.

As you've already gathered I was winkled out of my shell today to go on a quick trip to Tesco. I've been indoors since Friday as I haven't been feeling too well but agreed with Peter that I must stop turning into a hermit and get a bit of fresh air. As we were only going to pick up some bread and couple of other bits I decided not to bother with the wheelchair stating rather beligerantly that 'Iwas fine' and 'it was only a short walk.' BIG mistake. The trouble with sitting down all day doing nothing is that you don't realise what you limits are until you try to push them.

Thought I was going to have a heart attack today. I was working on a very important personal file on the computer when the cat jumped up on the desk. I was in the process of renaming a document at the time and totally distracted by my furry visitor made a couple of clicks with the mouse, looked back at the screen and I'd deleted the whole folder. Nine months of intensive work gone. Thankfully I live with computer whizz who insists on backing up everything to tape once a week so fortunately after twenty minutes my file was fully restored, my heart rate had returned to normal and the cat will still get his dinner tonight. Note to self NEVER click on ANYTHING in future without looking at it.

Took delivery of a beautiful bouquet of flowers from work today. What a lovely surprise. Pink and white carnations and mimosa, very pretty. My flower arranging skills are limited to stuffing them into a vase after loping off a few inches from the bottom of the stems but I've managed to make them look quite nice and they are now sitting on the windowsill in my living room. Just hope the cat doesn't knock them over in the night.

There probably will not be a blog tomorrow as I'm off to see this therapist woman. She hasn't replied to my e-mail yet so if there is nothing in the morning I'm just going to have to go to reception and hope they know where to find her. My blog will return on Thursday when I'll tell you how I got on.

Always Look On The Bright Side Of Life

It is coming up to a week since I was informed of my change of medication so by the hospital's reckoning I have two weeks to go until I get the call to go in for the procedure. That, of course, is if everything goes to plan. The big fly in the ointment is the PCT. Whenever I think of the PCT I think of the rebel faction in the film The Life of Brian. If you haven't seen it I recommend you do. In the film The Peoples Front of Judea, or was it The Judean Popular Peoples Front, never actually achieve anything because there always has to be committee approval. There is one scene where the central character, Brian, is captured by the Romans. When the rebels are informed they immediately form a committee to discuss how to rescue him much to the frustration of the only woman amongst them. In a fit of anger she shouts 'Reg, it is perfectly simple' and then explains that they ought to be doing something rather than just talking about it. This is exactly how I feel when waiting around for their latest pronouncement.

As a matter of interest the woman, played by Sue Jones (I think that's her name) is now the mayor of my home town, Aberystwyth. Incidentally Aberystwyth was the last town in Britain to remove the ban on film, coincidence? Maybe, but about bloody time.

Had a phone call from the warfarin clinic wondering when I'd be well enough to attend. I have provisionally made an appointment for next Tuesday. I think they must have had a pep talk recently as instead of talking to me as though I were a simpleton the woman actually talked to me like a human being and even asked me how I was. Maybe they've had a complaint about their attitude, which would not surprise me one little bit.

The call reminded me of my appointment with the counsellor on Wednesday and it suddenly dawned on me that I had no idea where in the hospital I am supposed to be going . You'd have thought I'd have realised this when I was chatting to the counsellor on the phone last week. An email has been sent, I just hope she gets it before I leave the house. Just don't know where my brains are at the moment.

The toe it would appear was just badly bruised so the owner has gone off to his Karate meeting with the slightest of limps. Hope he doesn't go and damage it again.

Like many others I am watching my bank account to see if I got lucky in the olympic ticket drawer. I put my name down for tennis and marshall arts. I don't really know why I applied in the first place other than getting caught up in the moment. If I get some tickets I will be pleased but won't be upset if I don't.

 Note to self, I must stop playing Zuma Blitz, I'm starting to dream about that bloody frog.

I Get Pushed Down But I Get Up Again

Had another complaint today, from the same person as previously, berating me for writing a blog that was all about me. Huh? So what am I supposed to write MY blog about then? Crazy.

Beaten by Azerbaijan (since when has that been in Europe) and Jedward. Shameful. I didn't watch but my eldest decided not to join us for film night and came bounding down the stairs to give us the result. My turn to choose the film and this time I chose something that was neither comedy or chick flick much to everyone's surprise. I was in the mood for suspense and drama so Apollo 13 it was. A very good film but a tad long. The viewing was somewhat spoiled by my youngest guffawing at scenes such as 'we are hoping to develop a computer pretty soon that will fit in one room' to gasps of amazement and wonder from other characters. Hysteria set in again at the thought of anyone being so upset at the break up of the Beatles that they would lock themselves in their room. I finally snapped when he express surprise at how primitive things were 'in the old days'. He remained quiet after I reminded him that I was nine at the time of the moon landings and didn't quite class myself as ancient just yet.

I'm in a bit of a bad way today. My chest feels as though I've got an elephant sitting on it. It is really strange how one day you can feel next to normal and the next day be unable to do anything at all. Head wise I'm feeling quite a bit better today. I am thankful that I tend to be quite a positive person so I never stay down for very long. I'm also quite practical so know that I have to do this to get better. Once you've got your head around why something has to happen it is so much easier to accept.

I had a phone call from work yesterday. I'm going to be getting a visit sometime next week. It'll be nice to see some different faces and I'm looking forward to hearing all the gossip. I really miss work. PH is such a lonely illness, you are trapped inside a body which doesn't want to work the way you want it to. Unless you have special equipment, such as a wheelchair or mobility scooter and a willing relative or friend to go out with it is so easy to become a bit of a recluse. There are those with PH who can get around pretty well on their own, I've been one of them up to now. Being like I am now only makes me admire those who live with really bad PH day in, day out even more. How do they do it without driving everyone and themselves mad? I would be impossible if it were me because I'm not good at being ill or dependent on others for very long. I'm doing ok so far but it won't be long before I reach my limit. It would be so much easier if I live closer to relatives but my sister and mother live in Wales and my brother in Scotland and to be fair my sister has her own problems. She has developed nasty ulcers in her mouth as a result of vitamin deficiency due to her anorexia so is not in a good place at the moment. My mum on the other hand is now in her 70's and really cannot be expected to look after me. My friends although very supportive cannot spend much time with me due their own work/family commitments. It is terrifying how quickly you fall out of the loop if you just can't get to the pub/workplace/restaurant or don't feel up to going out. My husband and son's do their best but I sometimes crave female company.  

A quick tour of the garden revealed no damage following the heavy overnight rain. Indeed the clemitis in particular has shot up and looks very healthy. I wish the same could be said for my carrots which appear to have been dug up by some small furry rodent. The suspect was seen hopping across the law this afternoon before disappearing up a tree and into next door's garden. I have always loved having squirrels in the garden and have encouraged them so cannot really complain. I have loads of seeds left over so will just have to re-plant when weather and health permit.

Don't Bring Me Down

Someone wrote a comment on yesterday's blog saying I wasn't 'fit to write on this blog' and what I was writing was 'wrong' and I should think of 'the young people'. In my experience 'young people' tend to be curious and are able to find out anything they want on the Internet so reading my blog is hardly going to scar them for life. It amazes me that there are still people out there who think that illness, any illness, should be kept hidden and not talked about, as though it is somehow shameful. I've read the complaint several times now and I'm not even exactly sure what it is this person is complaining about. Is it the descriptions of the treatment? The way I talk about my feelings? The fact I comment on other things? Or just the fact that I am writing about PH at all? As for being 'not fit' well I acknowledge that I am not an expert on the subject. All I'm writing about are MY experiences, MY feelings and how I'M coping with it all, I'm not speaking for everyone, nor would I even attempt to do so. I am fully aware that I am not the only person with this condition but I cannot write about their experiences because a) I don't know them and b) their experiences will probably be different from mine anyway. There are plenty of websites out there that give the technical ins and outs and different perspectives on the subject, and there are websites with forums offering support and a chance to chat with other sufferers. I am not claiming to be anything other than a blog. If people find it interesting, informative or helpful then I am glad to have helped in some way, if they don't then I'm afraid that is their problem not mine.

PH doesn't just affect the person with the condition, many fail to realise that it affects everyone close to that person. As caring mothers, fathers, wives, husbands etc we try to protect our relatives and friends from as much as possible. It is OK to be angry, afraid, happy, or just fed up. Why shouldn't it be? It is OK to feel these things without PH so why not with PH. What is not OK is to keep things bottled up to such an extent that it changes you and your relationships with others. I have two sons who are just starting out on their adult lives. One is in a good, steady job the other hopes to go to university. Both understand I'm ill and both I'm sure worry about me but will I constantly pull on their heart strings and make their lives miserable? No I won't, it is unfair. Of course I've cried in front of them and my husband, they have all felt my anger on occasions or been frustrated because a trip out has had to be cancelled because I'm not well that day.This blog will hopefully show that having PH and the feelings that go with it are nothing to be ashamed of and are normal for any illness. I make no apologies for that.

So why do I do my crying in the bath or in the ladies loo at work?

When I was first diagnosed I was attending a clinic at the Royal Brompton for a follow up after having the RHC (Right Heart Catheter) and I was sitting in the waiting room with Peter when this woman was wheeled in by a man I presumed was her husband. I lent over to Peter and said 'God I hope I don't end up in a wheelchair.'  I watched her a little longer out of curiosity when suddenly she glanced up at me, in her eyes was pure hatred. I didn't know what I'd done to provoke this reaction so continued to watch her more discretely. It soon became apparent that it wasn't me she hated it was everybody. She spoke to the man as though she'd just scraped him off her shoes and called him every name under the sun, complaining about everything he did for her. At first I thought they had had a domestic before coming out until he presented her with a cup of something to drink. I don't know what he did wrong but her reaction was so awful I remember thinking there and then that more than anything I didn't want to end up bitter and resentful and taking everything out on those near me. She clearly blamed him for her condition and he had the air of someone who had heard it so often he was beginning to believe it too. Crying alone or kicking a wall in the garden relieves the tension and keeps me on a more even keel mood wise. Writing this blog is probably one of the best ways of helping myself because I can freely write how I am feeling and offload without seeing my fear, hurt and anger reflected in the eyes of someone I love. I can cope with my own pain but the pain of a loved one on my account would be too much to bare.

Ok enough of the philosophising.

Still no rain dammit, though the plants have now been watered and are looking quite perky. Now I sort of hope it doesn't rain as I don't want them getting too wet. Fickle or what?

Andrew started study leave for his AS levels on Friday. I am amazed at how quickly this year has flown. He has also possibly broken his toe during a game of football. He came limping home with a toe the size and colour of a plum but is currently refusing to see a doctor. I don't know what the treatment is for a broken toe, can they plaster it? Anyway the persuasion is on going as I write.

I am on ebay duty today as my eldest is at work and the watch he has up for sale is in the last few hours of the auction. There have been over 100 views and he has 5 watchers so hopefully he'll get a result.

The excitement never ends with Eurovision and Britain's Got Talent on TV tonight. Which one to watch?  Neither, think I'll go for a nice disaster movie instead.

The Only Girl In The World

Bloody Blogger, they have had 'technical difficulties' and lost all yesterday's posts. They hope to 'restore them as soon as possible'. So if you thought you read a post called 'Cloudbusting' yesterday be reassured you were not dreaming and with a bit of luck will be able to read it again soon.

Forgive me but I am so heartily fed up with this McCann business.

Don't get me wrong I do sympathise, losing a child in any circumstances is horrible, I lost my own son at the age of three weeks twenty years ago and it still hurts like hell when his birthday comes around. What winds me up with this story is that everyone acts as though she is the only child who has ever gone missing. What about the thousands who have gone missing before and after her? Where is the publicity for them? Most I'm willing to bet we never hear of. Part of the reason must be because the hatchet faced mother and dope faced father managed to produce an exquisitely beautiful little girl. In this age driven by looks Maddie was a Godsend to all the media hungry for a human tragedy story on a slow news day. The constant reopening of the wound is obviously mostly driven by the guilt felt by the mother for leaving three kiddies under the age of four in an unlocked apartment while she enjoyed herself with friends. This unfortunately was not a one off and the children by all accounts had been left on their own most nights during the holiday. They were virtually giving their children up to any predator on a plate, it would be so easy for someone watching night after night to figure out when would be best to strike. However I do not believe that Maddie was taken from the apartment, I believe she woke up and went looking for the parents, after that there are three possibilities.
1. She was wandering the street and some opportunist did take her.
2. There was a lot of building work going on in the area at the time, in the dark she could quite possibly fallen down a shaft or hole and gone unnoticed. At the time I kept thinking why haven't they searched the sites, particularly the holes that were filled soon after she went missing?
3. She fell into some water, maybe a river, a pond or even the sea. Again it being very dark she could easily walk off a sea wall.
What I do not believe is that she is still alive. Yes I know there have been a couple of cases lately where missing children have turned up years after being abducted but with Maddie it would be very difficult to keep her a secret with all the publicity. I also do not believe the parents murdered her, though I still believe they may have given her something to keep her quiet and maybe did not give her enough. Whatever happened I doubt we will every find out as the chances of finding her now must be almost nil.

One final thought, there was a brief discussion about this on Facebook and someone posted that they would not like to leave their children with a foreigner babysitting as they would not like the children to be scared if they woke up. What would be worse? Having your children momentarily distressed by finding a kindly, well meaning stranger looking after them or waking up to find themselves alone or worst still being dragged off? You decide.

Still no rain, nothing for it the watering can just has to come out tonight (it'll probably pour down tomorrow).

Was dragged out of the house for a quick push around Tesco. I didn't really want to go and didn't really feel up to it but once again going out lifted my mood and although exhausted I did feel better by the time I came home.

Today has been a bit of a feeling sorry for myself day. It is the sort of day when I wonder what I've done to deserve this horrible condition. The answer of course is nothing. I'm told by well meaning, and the more religious, relatives that it is some sort of test. Really? For what exactly? And considering all I've been through in my life, haven't I been tested enough? People tell me how well I'm taking it and how I never let it upset me. Well they don't see me in the ladies loo or in the bath crying my eyes out then chastising myself for feeling sorry of myself. Thankfully I don't have these days very often and the mood rarely lasts the whole day, more like a couple of hours. I'm hoping they will become less after I've seen this therapist person. According to the literature she sent me she also does hypnotheraphy to relieve pain and stress related to medical conditions. I'm going to ask her to help me through having the line inserted. I figure the more relaxed I am the easier it will be. After all people have had major operations under hypnosis so inserting a line should be a doddle.

Cloudbusting

I had to add temporary moderation to my blog last night as someone or something decided it would be fun to spam me with abusive comments. I have reported them so as soon as they are dealt with it will be back to normal. Sorry for any inconvenience.

The Apprentice, I absolutely love this show and this year's candidates are shaping up to the the best yet. I already have a massive dislike of Edna and Melody but no feelings on any of the boys either way. Though the Mickey Pearce (Rodney's friend in Only Fools) look alike makes me grin each time he appears on screen. He may look goofy but he was the only one worried about the offense the Slang-a-tang app might cause, so he might be emerging as a favourite. The dilemma I have each year is wanting the ones I dislike to be sacked but when they are deeply regretting it because they are what makes the series interesting.

I have answers to my questions. The procedure take about 30 minutes under local anaesthetic so it is not painful but might be uncomfortable with all the pushing that goes on. It should be relatively difficult to remove the line as it is sutured to the skin; the stitch is later removed as the line is then embedded. Though there have been reports of lines coming out, this is very rare. I can bath and shower although I can NEVER get the pump wet. Not sure how that is managed but I'm sure they will tell me. Movement with the line is not hindered. I will be on a drug called epoprostenol. This will be administered by preparing two cassettes of medicine a day, keeping one in the fridge and changing them every 12 hours. It sounds relatively straightforward doesn't it.

In the garden my herbs and flowers are growing really well though I long for rain, just a good downpour would do as my carrots in particular need a lot of water and I don't like nagging Peter to get the watering can out all the time. Huge black clouds keep passing overhead but just keep going, so frustrating. My tomato plant is the real star of the show with a second cluster of flowers having appeared and I've barely had it two weeks yet. I might have to start looking up chutney recipes if I get as much fruit as they are promising.

Feeling a bit better today but that might be partially down to have a decent night's sleep for a change. It might also be because I've slowed right down and only move if I have to, the stroll around the garden being the exception. I think acceptance of the situation has begun to creep in and instead of worrying about it and trying to fight it I've finally decided I can't do anything about this so I may as well just let it go. Who knows what the cause all that matters is today is a better day. I even felt well enough to cook, although omelets are not exactly haute cuisine they filled a gap and were easy to make.

I was supposed to be seeing this therapist/counselor person tomorrow but after two trips to London in a week I've decided against it and have changed my appointment to next Wednesday. I figure that by then I'll be sufficiently bored to welcome any distraction, even if it is with someone trying to get me to 'explore my inner feelings'. To be fair I think it might be helpful as I do have terrible down days and angry days, sometimes both together so if she can teach me some techniques to help me glide through these days unruffled it has to be worth it.

26. Watch the men's final from the center court at Wimbledon.

Dont Tell My Heart, My Achy Breaky Heart

They say things are sent to try us and believe me I am being severely tried at the moment.  Once I'd got over the euphoria of being told they know what is wrong and how to fix it the reality check set in and I woke up this morning realising that in less than a month form now I'm going to be permanently attached to a machine. What a big step to take. I also came up with a load of questions that my mangled brain had failed to compute while actually sitting in front of the consultant. I've sent them off to my nurse specialist who hopefully will get back to me soon. The first batch are listed below. I will add more as I think of them and let you know the answers in future blogs. For those who are used to the cosy, 'nothing nasty or involving blood', atmosphere of the PHA website do be aware that on this blog I intend to tell it as it is.

How long does the procedure take?
Is it done under local or general?
How difficult would it be to accidentally pull the line out in your sleep?
Will I be able to move my arm and shoulder freely without fear of dislodging it?
How many types of Prostaglandines are there and which one will I be given?

Have also been weighing up the pro's and con's from my point of view. The obvious con is the fact that I'll be attached to something. Others include the risk of infection at the line site, the complicated mixing of the drug and the switching of the syringe(though that will get easier with practice) and the increased hospital visits at least for the first few months. On the plus side there will be no more clock watching to take meds 9 times a day or lugging around a bag full of stuff every time I go out. I'll be less tired as sucking away on a nebuliser for 10 - 15 minutes each dose is exhausting. And I'll be getting a constant dose of the drug rather than a high and a gradual fading away as I get now, so I should feel better and have more energy.

It has been a month since I applied for my DLA and as yet silence. I've been back onto the website where it says my claim is 'in progress'.

To save me from myself Peter and Andrew took me to Costco this afternoon to pick up a few supplies. Peter was in charge of the trolley and Andrew took charge of the wheelchair. Thankfully it was very quiet so we were in and out in just over an hour. It did cheer me up to be doing something 'normal' even if it was in a chair. Tomorrow, if it is nice, Peter says he's going to take me for a push along the Ouse to see the new Cygnets.

Peter cooked dinner today. I think some cooking lessons are in order, I fancied a light delicate pasta, I got pasty and beans. Am I grateful? Of course I am but I don't want it every day.

Laurence went paint balling  with some work colleagues yesterday. It was a painful experience by all accounts but hugely enjoyable even if the marks left do make him look as though he has an alarming outbreak of ringworm.

24. Go rock climbing
25. Go paint balling

Under Pressure

Well the three days of enforced rest are over and it's an early start to get to the hospital by 09.15. Today is test day, first the CT, then the echo and of course the obligatory blood tests.

Yesterday I bit the bullet and went to see my GP to get signed off sick. He took one look at me and promptly wrote out a note for two weeks 'as a start'. Whatever happens I'm now off until 23rd May. I hadn't unpacked my bag from Friday as I was sure they were going to keep me in so it didn't take long to get everything ready and by early evening I was ready to go.

Traffic was not so good today and I made my appointment time for my CT scan by a whisker only to find it had been cancelled and moved to this afternoon. On the ward I had my first run in of the day when they tried to take all my medication off me. No way was that going to happen. I am not a moron or a child, if I can be trusted to take it out of hospital then I can be trusted to take it in hospital. They say it is their policy, well two fingers to their stupid policy. It was not their policy when I was last in. Saw the doctor who ran me through what they are considering for me. The Hickman line is still the fore runner.

Went down to have my echo first which went like clockwork though took rather longer than usual. Back on the ward I had barely time to get back on the bed before another porter arrived to wheel me down to have my CT. Everything was going well until I noticed that he'd sailed past the CT lab and was heading to an area I was unfamiliar with. I challenged this, reminding him that I was going to CT. He thrust a piece of paper in my face and said 'pacing'.
'Pacing? I've got no reason to go to pacing, I haven't got a pacemaker.'
'Pacing', the piece of paper was waved in my face once more.
'No CT'.
'Pacing'
'Oh for God's sake! I haven't GOT a pacemaker.'
I even pulled down my top to show him but he was adamant. Fortunately my consultant happened to round the corner just at that moment and ordered the porter to get me to CT without any further delay.

Back on the ward the long wait for results began. I knew it was bad when not one but 2 consultants, 2 registrars, and the ward sister turned up. I was even more convinced it was bad news when my consultant squatted down beside the bed. I won't bore you with the details of the conversation, mostly because I was so shocked I only heard half of it. The echo showed a big difference from the one I had in April. My pressures are up, up,up and the right side of my heart is not coping with the rise. The only thing they can do is get a Hickman line inserted and start me on Flolan. Because I am so ill they are writing to my PCT as an urgent case and with luck I'll be back in 2 -3 weeks to have the line put in. In the meantime I'm grounded. I must not walk, climb stairs, lift carry etc, etc. On the plus side no signs of any clots and both my lungs and my arteries are coping well, for the moment. With every cloud etc. Oh and the transplant team are being given another kick up the backside and told to get a wriggle on.

I'm Busy Doing Nothing.

Bored, bored, bored.

Everyone dreams of that day when you have time to yourself to spend the day just lazing about watching favourite DVD's and not having to interrupt yourself to cook, wash up or go shopping for other people. However when it is enforced it sort of loses its appeal.

Today I have managed to stagger onto the patio where I sat on the wall in the sun and pulled some weeds coming through in the herb garden but that was the only activity of the whole day. Worst still I have have another day of this inactivity to go. I am going to drive myself, and everyone else, mad. There is nothing else for it, I'm just going to have to get the beads out again. I enjoy making bracelets but don't usually have the time, I think this might be the answer to my current problem provided I can concentrate, I'm so restless I can't focus on anything.

I had a letter from the Brompton on Saturday, it was just changing the date of my clinic appointment in August, they like to think ahead, and I now have to go in on the 26th. I also received an e-mail regarding this hypnotherapist/counsellor they want me to see. I have an appointment to see her this Friday at 2.30. I think the first problem may be the language barrier as I had to listen to the message four times before I got what she was saying because her accent was so strong. Not a good sign. The second problem is the timing. As I'll already have been to London twice in a week a third visit does not appeal. Obviously if they decide to keep me in for treatment then there will not be a problem as I'll already be there.

I am preparing for battle with my local warfarin clinic on Tuesday. If you remember I had a bit of a run in with them recently as I had to skip a couple of weeks due to work commitments. Well the date they have given me is Tuesday, and where will I be on Tuesday? In the Brompton. I will take great pleasure in ringing to cancel my attendance, letting the receptionist have a little rant and then calmly explain that I am in hospital where my INR is being very carefully monitored and as of Friday 6th was a stable 2.5. When you are this bored it is the little things in life that you look forward too.

My son's have had a busy weekend with both attending parties. Laurence went to Leeds for a friend's 21st while Andrew stayed closer to home for a 'chill out' with friends. Laurence was of course an over nighter but Andrew was supposed to return home around midnight. I could feel my blood pressure rising as we approached one o'clock. When he finally rolled in at two I was too tired to tell him off but this morning he is in no doubt that in future if he is going to be later than expected to let me know. I don't suppose the neighbours were to thrilled either as that bike makes one hell of a racket.

This Is The Road To Hell

I hate going into hospital. I'm needle phobic and the first thing they tend to do is take blood. The second thing they like to do is stick a cannula into your arm 'just in case we need to give you intravenous drugs'. My usual response goes something like this, 'here's a novel idea. Why not leave the cannula out until it is actually needed, saving the hospital some money and the patient unnecessary pain and stress?' This question usually leaves them completely dumbfounded and they tend to hover next to your bed not quiet knowing what to do. Those that have encountered me before don't even bother bringing the stuff near me now as they know what they are up against. I'm not an awkward patient or a demanding one but there are things I will put up with and there are things I definitely will not put up with. The criteria is whether I think it makes sense, if it doesn't and they cannot justify why they want to do something then it does not get done. Simples! Fortunately my medical team tend to share my philosophy so it is rare that we go head to head.

The first obstacle to overcome is the journey there, we live just off the M1 which is undergoing extensive road works at the moment. The speed limit is currently 50mph but we often end up doing significantly less for no apparent reason. Today of course, just because I DON'T want to get there in a hurry the roads are clear and we make it in just over an hour.

Things move fairly swiftly when I arrive with a bed ready and waiting. I have the obligatory blood test and ECG and am then sent down to x-ray. All within an hour of my arrival, a miracle in itself. Now of course we have the waiting game for the first set of results to come in and to see the consultant. I am given the lunch menu and from the rather horrible options choose lentil soup, fish and chips and fresh fruit. The one really good thing is that now you can bring your own laptop in and connect it to the hospital wireless network, excellent.

1630 and at last the consultant looms over my bed brandishing the results. On the whole things are not looking too bad but there is always one fly in the ointment and today it is my BNP (Brain Natriuretic Peptide) levels. This is a protein that is produced by the heart muscle when under stress. Normal people generally will have a result under 5, most people with PH range between 10 - 30, mine has hovered around 20 since diagnosed. Today mine was 215! The consultant was almost having apoplexy. Obviously the priority is to find the cause so I'm now down for a CT scan and yet another echo. These are booked for Tuesday morning, so I have been kicked out to wait on the solemn promise that I will do nothing but sit for the weekend. They are reluctant to commit to any form of treatment until the results of these tests are in but they are going to fast track them so I'll have them that day. Depending on what they say it will either be treatment or more tests. Whatever they do this is looking less like a quick fix.

Shoot The Messenger

OK I am willing to believe that Bin Ladin is either dead or captured and being held somewhere very secret. This is simply because if he were still alive and free he could easily release another video showing him with a newspaper dated after the supposed killing took place. For that reason and that reason alone I think the American's got him one way or another.

Finally got the long awaited call from the hospital to say that due to the two bank holidays they are over loaded and cannot possibly fit me in until Friday. If there is a cancellation tomorrow or someone is discharged early then I am at the top of the list but I'm not hopeful. When I do get in it will just be for the day for loads of tests and then back the following week for the results and any treatment they may decide to give me. Obviously if they think I am really bad then I'll be kept in but ironically I've been feeling a little better today, wouldn't you know it. I wish there were instant fixes but it seems the wheels of medicine, like the wheels of power, grind slowly.

 My rash was diagnosed as Eczema by my GP which is a huge relief as Shingles, which is what it was thought to be, would be very bad news indeed. I have been given steroid cream and told not to scratch. However when I told my specialist this she went very quiet then said.
'How interesting. Have you had this before?'
'Well no or I would have recognised it.'
'Hummmm, we'll have to look into that.'
What the hell does that mean? Medics, never get a straight answer.

Spent the day catching up with paperwork and watching TV. Had a nap in the afternoon with the cat. Andrew had the first of his Physics practicals today, seems to have gone OK but I'm worried about him, he seems to have lost his usual confidence. I think it is because he doesn't really know what he is aiming for. He changes his mind every day. I know that it will all turn out OK for him in the end but he seems all over the place at the moment. Put Laurence's watch on ebay for him. It is a really expensive Maurice Lacroix that he won in a competition. He says he'll never wear it, which is probably true as he never wears a watch, so he'd rathwr have the money to buy something he does want. Kids!

Take My Breath Away.

Well things are going down hill so rapidly I'm wondering whether I'll ever climb back up. Spent the day waiting to hear from the specialist center, by 3pm I cracked and phoned them. The secretary took a message saying they were all out at the clinic or on ward rounds but she would pass the message on to the first person through the door. Hope that is sooner rather than later.

Got two letters from the inland revenue. One telling me what this year's tax credit will be. The other told me they had miscalculated my payments last year and now owe me nearly £400. In fact they owe me than they say I owe them so why not forget paying me back and just take it as payment? A classic case of the right hand not knowing what the left is doing if ever I saw one. Which reminds me, must dig out my evidence and write that shitty letter.

In the news five people arrested near the Sellafield nuclear plant under the terrorism act. Well, well, well that didn't take long did it. Unless of course they are innocent tourists that have been jumped on by over twitchy security for 'looking at me in a funny way and possessing a beard.' Time will tell, eventually.

My tomatoes have survived their first night outside but am not happy to hear we are expecting a frost tonight. Operation wrap up will begin at 1800 hours, dammit. I have carrots! And Basil and some of the flower seeds I've planted have also started to appear. No sign of the Sweet Peas yet though but I'm still hopeful. It is such a shame that it is slightly to cold to sit in the garden, there is nothing I like better when not feeling well than to sit in the fresh air and listen to the birdies singing.

Today has been one big struggle. I've struggled to get out of bed, bath, eat, drink, walk or take my meds because I just can't breathe. I've also struggled to keep my temper and my good humour as the frustration is already setting in. I hate these bad days especially when they turn into bad weeks or months, as this one is threatening to do. This time last week I was, well not exactly fine, but able to talk walk and do most of what I wanted to do without the need to rest every couple of minutes. Now even going up and downstairs on my bottom is too much effort and leaves me gasping like a fish out of water with the effort.

Finally got the call, am being admitted as soon as they have a bed, hopefully tomorrow but more likely Thursday. In the meantime I have to go to see my GP tonight and get an assessment as to whether I need to go to my local hospital until a bed comes free. I hate my local hospital with every fiber of my being so I will not be going there unless I'm unconscious and have no say in the matter. And even then I'd object.

Ding Dong The Witch Is Dead.

Or is he?

Let me just say that I am not out to offend anyone with what I'm about to write, this is just my opinion.

There are two arguments I'd like to put forward, the first being is Osama Bin Laden really dead? How do we know? We were not there and haven't seen any proof, as yet. It all seems a bit strange to me. They say they gave him the opportunity to surrender, then shot him. How many were there against him, couldn't they possibly overpower him? To me if he really is dead and the way he has been disposed of (the term the Americans used) not only is suspicious but results in a very hollow victory for the victims of 9/11 and 7/7 and their families. They may be cock-a-hoop at the moment but when the euphoria dies down the doubts will set in and drive them crazy. How much better would it have been to capture him and put him on trial as they did with Sadam Hussain. We all know he would have died in the end, it was inevitable, but how much more satisfactory for those grieving to SEE justice done rather than hear about it happening. To be frank dumping him at sea just leaves a bad taste in the mouth and skeptical mind wondering.

The second point I'd like to make is if he really is dead and his followers believe this we should be scared, very scared indeed.  If anyone thinks that killing Bin Laden means everything is over think again. We are going to see a backlash of unimaginable proportions. Nowhere is going to be safe if you are American or British or have connections to either country. Personally I think the way this has been done has just set the match to the tinder box and over the coming months we will find out just how nasty things can turn. What has been done had to be done but it is the way it was done that needs to be questioned.

OK enough with the serious stuff.

Still debating whether I am ill enough to warrant not going in tomorrow.  I feel OK when sitting watching TV or using the computer but if I try anything beyond a short, gentle stroll I become breathless and get chest pain. I know some are reading this and thinking WTF, stay at home you daft woman. I would be one of them if I were reading this as a stranger but you don't know what it is like at the moment. We are so short staffed, a situation made worse by one of our number leaving last week and not being replaced, that I feel so guilty if I take anytime off at all. And lets face it, I have had a lot of time off over the last year. It worries me what they think. Do they think, Hazel's off AGAIN, what is it this time? Or do they realise that I really cannot help it and that things can only get worse as this is a progressive illness. Having said all that my supervisors have all told me that they really understand and knew what they were letting themselves in for when they took me on and if I have to take time off, then I have to take time off. It is hard when you've been used to crawling in feeling like death warmed up to find you suddenly cannot do that anymore. A simple cold turns into something serious 90% of the time. While a chest infection can become something far more dangerous in a very short time. A least I suppose I do have a real reason for being off but it doesn't make me feel any better. Oh what to do?

Ventured out this afternoon to a nearby garden centre where we bought Clematis (pink) and a couple of tomato plants. Had to sit and watch Andrew and Peter plant them for me, which sort of takes some of the pleasure out of gardening. The wind has turned very chill and the clouds are increasing. I'm secretly hoping for rain, if not Andrew will be out with the hose tonight making sure my herbs don't keel over.