Look Out Aberystwyth! Here I come!

So excited about my up coming trip to Wales to see my family and just getting away from everything.

Of course I won't be able to get away from everything because I'll be dragging all my meds with me and have to let Papworth know where I'll be staying. However I'll be away from work, home and the computer so it will be a change and they say a change is as good as a rest.

There are a couple of niggles though.

Even though I've laid low and stayed put these last two days my breathing continues to worsen. It's not at 'I need to see a doctor' level but it's worrying. Both Peter and Andrew have a cold so it may be that I'm going down with the same thing. On the other hand it could just be the weather. Anyone with PH, Asthma or COPD knows that the weather is one of the main factors in how you feel from day to day. The other thing it could be is hay fever. I've been sneezing a lot and my eyes are quite itchy. I'm hoping the change of air will help. I always perk up a bit when I'm by the sea. However I will be taking my emergency supply of antibiotics just in case it decides to develop into something nasty.

The second niggle is purely in my head. As I wrote in a blog not long ago, last year I was perfectly at ease and thoroughly enjoyed my visit. This year I'm feeling nervous. If I hadn't had that damned false alarm I'd be perfectly relaxed this year too but I know I'm going to be repeatedly checking my phone. I know Papworth will be able to get to me in Wales but the logistics of it all worry me. It shouldn't, after all I'll have no say in the matter, I will literally be a passenger. I just hope that once I'm on the prom enjoying the sea air I will be able to relax and enjoy myself.

I guess how I'm feeling is perfectly normal and getting that false alarm has just made me realise how much I want and need another call.

Enough! Stop over thinking!

Andrew will be staying home to look after the house and cat as the last placement for his uni course starts on Monday. I think it is awful how they kick him out of his digs before his course is really over. The problem is that the paramedic degree is fifty percent academic and fifty percent practical. He has passed all the academic stuff and just needs to complete this last placement before officially qualifying. The university, however, does not recognise this fact and treats paramedic students as any other student and expects them to leave halls before the course officially finishes. Everyone else's course finishes in May, except those needing to resit, but the paramedic students don't finish until August. As it is their course wouldn't you have thought the university would have arranged for paramedic students to stay longer, yes so would I but no! Andrew has opted to stay at home during placement, which adds twenty miles to his journey each day. Those students living further afield have to rush around to find bed and breakfast accommodation, in the middle of the tourist season. Crazy! Still, even with the extra mileage, it will save him money and we get a free house/cat sitter.

Talking about the weather, I've been playing cat and mouse with the rain yet again today.

When I go away I like to have all the laundry done, washed, ironed, put away. That way if there was any hiccup or delay I could relax, safe in the knowledge that I haven't got to do anything other than feed everyone when we finally arrive home. Most of it's done but of course Andrew's laundry arrived with him so I've got the tumbler in overdrive.

Oh well, my bag is packed, my meds are made up ready to go and the car is fully fueled. Unless something drastic happens I will be arriving in Aberystwyth around two tomorrow afternoon. I just hope I don't bring our weather with me.

Next blog Thursday.

Taking Time Out

After a hectic two days, and another battle with Health(don't)Care at Home, I'm really feeling it today. I'm tired and achy and generally out of sorts, my breathing isn't so good either. So today has been designated a 'sit on the sofa' day.

I'm a bit worried as I'm supposed to be going away in a few days and really don't want to feel poorly. Hopefully if I'm really good today and tomorrow I'l improve enough to travel.

To be fair to H@H they were not quite as bad as they had been. However I did find it necessary to write yet another email. Here it is.

Once again I am writing to complain about the appalling service your company continues to deliver despite assurances that things are getting better.

Earlier this week I received a letter signed by Mr. McAndrew. This letter, whilst apologising, was full of excuses which frankly I have no interest in or sympathy for. In the letter Mr. McAndrew stated that he wanted to ‘assure you of our continued best efforts to improve and deliver the service levels you deserve.’ Clearly hollow words, with no meaning, as once again I am being held ransom by your company as I wait in for yet another non existent delivery.  This afternoon I was supposed to be going to collect my son from university, now my husband has to go on his own while I try to get through to you company.

Getting through to someone at you company is a farce. I had been give the direct line for the supervisors Helen or Tracy 07827242621. However, when I rang this number it went to the answering machine of someone completely different. So after holding on for the main number for 15 minutes I finally got through to someone who then put me on hold. When she finally came back to me she said my delivery had been scheduled for between 1500 – 1600 and she could not explain why, on your website, it is still showing as between 1104 – 1304.

This is totally unacceptable; your whole organisation is beyond a joke and really should be stripped of their contract. All I can hope for now is that the deliver turns up this afternoon and is correct. If not then expect another email. Actually I don’t live far from your offices so maybe I’ll pay you a visit. 

I'm not sure what it was about this email, maybe the threat to turn up on their doorstep, but my delivery arrived on the dot of three and was followed by a phone call from Mr McAndrew himself. He once again apologised for the mess up and explained that it was due to a delay in the pharmacy. This delay meant it could not go on the usual van and they had called in a special courier to ensure I received my delivery. He only hesitated slightly when asking if everything was correct. By some miracle it was so the call was ended politely. This morning in my inbox I found this.

Dear Mrs Roberts

Further to our telephone conversation I apologies that you have had further difficulties with today’s delivery but am pleased to note that it has now arrived and you have everything that you need. As we discussed the reason that the time on the tracker was at odds with the promised delivery time is because the order was not dispensed in time to be shipped as planned last night we switched the delivery to same day courier this morning.  Although couriers provide a reliable way of dealing with urgent deliveries they do not have the real time tracking that we have on our own vehicles which updates the online tracker.

I note your request that we adjust the schedule to restore the planned safety stock of your medication. I have alerted customer services to this and asked them to contact you when you are back from holiday to arrange this.

Please don’t hesitate to contact me if you have any further difficulties   

I was amazed. This was the first time ever I have had an email back. It is usually phone calls but this time I had both. I now have everything crossed that they really are fixing things and from now on deliveries will be less stressful. And fair play to Mr McAndrew, he did what it says on the box.

Of course I still missed out on moving Andrew out of his digs but maybe that's just as well considering how I'm feeling today.

Today it is raining, again! Yesterday was a battle with the weather. I'd stripped the beds, hung the sheets out to dry and within five minutes it went from bright sunshine to bucketing down. It looks like it is following the same pattern again today. At least I did manage to rescue my sheets first thing this morning and they are now sitting in the airing cupboard having been tumbled dry. The roof at Wimbledon has been a God send and at least I'll be able to watch the center court matches, even if it is more like October outside.

I am going to have to go back to MK at sometime though because I found out yesterday that my little sister had bought my mother the very same book on Richard III as I had. Back to the drawing board. At least I still have the other book to fall back on.

Right I'm making good old sausage and mash for lunch. Always go for childhood comfort food when I'm under par. Here's hoping things pick up tomorrow.

Shopping For Mum

My goodness it has been such a busy couple of days and it isn't over yet. So much for me saying this was going to be my lazy 'do nothing' week.

In the end we didn't go to collect Peter's stuff on Wednesday as the person he was collecting it from had something on. This meant it had to be collected on Thursday morning instead. Which would have been fine if we hadn't already designated Thursday as 'find a birthday present for mum' day and were heading off to Milton Keynes. So we decided to make a day of it and set out early in order to pick up the stuff from Harrold by ten. Unfortunately because of the time constraints I didn't get the opportunity to take pictures as I'd hoped. However I have been promised a day out specifically to take pictures after our return from Aberystwyth.

We made it to Milton Keynes in time for lunch and decided to try out the new Ed's diner. It was definitely a class up from Burger King but I'm not sure it was worth the £42 we were charged for three burgers, three chip and some drinks. Nice but will be used as a treat rather than a regular thing. We then split up to do our own things.

I had decided to get myself measured for new bra's. I 'd been putting it off and putting it off because to me it is only second in the embarrassment gauge to a cervical smear. I was also worried about my line being pulled around. Like most women I don't get measured every time I buy a bra. It's usually reserved for special occasion bra's, during and after pregnancy and when there has been weight gain or loss. In between I just buy off the peg. However as you all know I've had some very dramatic weight loss followed by some very moderate weight gain and to be frank, my bra's are too damned big.

I chose Bravissimo to do the honours and hoped that I wouldn't end up with somebody squeamish. Let's be honest hear, having a blue line stuck in your chest doesn't do much for your 'self body' image. The last thing I needed was someone being insensitive. However I was shown into a room buy a lovely lady who didn't bat an eye when I removed my shirt to show the mess underneath, I've acquired a few scars over the years too. She was brilliant, and very gentle. She asked questions, well I wouldn't have expected her not to and she told me how she herself was a donor as was her husband and her children. After a really pleasant experience I walked out with bras two sizes smaller that somehow managing to give me a bust line similar to Katie Price.

I met up with Peter and Andrew at John Lewis and started the hunt for the birthday present. We covered the whole store and I could fine nothing I thought she'd like. I was at a loss and then I thought of something. Mum has just had her cataracts done. For the first time in years she can read again. Knowing she is a history buff I bought a couple of things I thought she'd like. The first is the story of finding Richard III as I remembered her talking about how she'd followed the news about it. I also know she is like me and loves church architecture so I bought a book on that as well. Hopefully it will be what she wants but I will take the receipt with me just in case. Thankfully Aberystwyth has a Waterstone's too.

From there we went to IKEA, Andrew wanted to look at a chest of drawers to sit under his computer desk for paperwork, and then on to Costco to pick up some pictures and milk. By the time we got home it was gone five and I was shattered. I was so pleased all I had to do last night was change the cassette. I had real difficulty keeping my eyes open by around nine.

Today I am tired but we still have things to go. We are moving Andrew out of university today so it will be all hands to the pump. When we go all rests on my expected H@H delivery. I was awake at four this morning worrying about whether it would turn up. A drug delivery company should not be giving their patients sleepless nights! Looking on their website first thing my delivery is scheduled between 1104 and 1304. At the moment they have approximately an hour to go before they are late and I start making phone calls. If the worse come to the worse Peter and Andrew will go on their own but that's not the point.

Right time to make lunch, sod's law they will arrive just as we start to eat but for once I won't complain, unless, of course, it's the wrong drug.

Those Lazy, Hazy, Crazy Days of Summer

Well Tuesday was a very strange day all in all.

For a start we had to spend the morning creeping around while Andrew slept after a night shift. Then all the items we'd had on ebay (around 10) sold in a couple of hours so we had some silent packing to do. Then the post arrived.

It contained a letter from H@H profusely apologising for the 'inconvenience and anxiety that we have caused you'. After a lot of explanation, which frankly I'm not interested in, they finished off by saying that I will see 'on-going improvements in performance'. Well we will see shall we as my next delivery is due on Friday. As they have already contacted me three times to check this delivery I expect it to arrive complete, correct and on time. Interestingly Mike Gordon is no longer their chief executive, they now have someone called Natalie Douglas. Hopefully she will be able to arrange a piss up in a brewery.

So back, briefly, to Monday.

We had one humdinger of a storm late afternoon. It got darker and darker until we were forced to turn the lights on to see what we were doing, and it was only six o'clock. At the same time the wind increased sending the curtains billowing and causing the trees and bushes to wave as though underwater. Then the rain came, a gentle patter at first, and then a huge flash ripped across the living room followed by low rumbles that grew to almost deafening levels before fading away only to be replaced by another one, and another one. This continued for almost an hour and then the sky brightened and everything began to return to normal. We had another shower later on but no thunder, thank goodness. It was really surreal to be watching a sunny Wimbledon whilst in the middle of a downpour. Usually it's the other way around.

Back to Tuesday.

After packaging and posting our items it was back home for another quiet afternoon watching Nadal. Irritatingly both he and Federer overlapped slightly so I kept having to switch over between breaks in play to see both matches. Fortunately I was able to see the last set of both but I have to say Federer looks to be more likely to be making it to the final. Nadal looked shattered at the end of his match while his opponent looked as fresh as a daisy. There is one question that keeps bugging me though.Why can't Nadal buy shorts that fit?

In the news on Tuesday was an article saying that someone had stolen Michael Schumacher's medical records and was peddling them for sale. How disgusting is that! OK, just like everyone else I've been frustrated at the infrequency of progress reports but  I do understand the family's need to protect both the man and his privacy. Although one of the most famous and successful drivers in the world he is a human being and not a public commodity to be picked over by the worlds media. I hope against hope that no one will buy these records from this horrible individual but if they do I hope they hand both the records and the seller over to the police as soon as possible.

I have designated this week as my lazy week so once again I will be sitting on the settee this afternoon watching Andy Murray play in the second round, if he makes it through I'll be doing the same on Friday too. Next week I'm heading off to Wales for a couple of days so that will be my crazy week, of course things could well change. Watch this space.

Before that though we've got the big move to tackle. Yes our boy is finally leaving university and heading home. The years have gone remarkably quickly and he will soon be out and about in the Luton area doing his thing. Where did my baby boy go? Today he is providing medical cover for a private prep school's sports day. He has done one of these before and the worst thing he treated was a sprained ankle. It's boring but he gets paid, and sometimes even fed by doting teachers and mothers.

As I'm writing this I'm waiting for the arrival of my new mixer. I got a text this morning to say it will be delivered between 1002 and 1102, which is awfully precise. Lets see if they can do better than H@H. I bet they get it bang on. Peter's also waiting in for a parcel so we are both in the same state of high anticipation. If all goes well and our items are delivered on time we are off out, briefly, to pick up something Peter won on ebay. It's not far from us so the trip should only take an hour or so and we are going after Murray's played. It will be the first trip out for me since Friday and I will be taking a camera. I've never visited this village before but have heard it is very pretty so might be worth a shot or two. I'll post the results tomorrow.

Tomorrow I'm off to Milton Keynes, it is my mother's birthday on the 30th and I want to get her a present. I usually send her flowers but this year, as I'm going to be around very close to the actual day I thought I'd get her something a bit longer lasting. My problem is what to get. She doesn't wear perfume or jewelry and bath stuff is out because that won't last long either. Not seeing her as often as I used to when I was well, it is difficult to keep track on her changing tastes and needs. I've asked my sister and only hope she is able to come up with some ideas or it's going to be one of those 'visit every shop' trips.

Well things to do, well I haven't actually, but I am refusing to let myself sit in front of a computer all day. That's what I do at work, I don't need it at home as well.

Sometimes Good Things Can Happen

So far today it has been a very good day.

I slept in until nine and woke without the overwhelming panic that I was late for my meds change over. It was lovely to just relax with a cuppa, kindly brought up by Peter, and not have to jump out of bed to get things done. I then remembered it was the start of Wimbledon fortnight and I'm home to see Andy Murray play his first match.  And then I got the best news of the day.

A little while ago I posted on this blog about my mixer melting and burning my hand. Well the company replied a couple of days ago requesting pictures of the damaged handle. These I sent off last Thursday. Today I get an email saying that they are sending me a brand spanking new, up to date, mixer as a replacement and will be collecting the old one for testing. Result! I haven't had to table thump or threaten or get nasty. A single email explaining the problem and followed up with photographic evidence and the problem is solved. If only all company's were like Duralit.

Yesterday I did a bit more painting. Although cathartic, I really wasn't in the mood, as evidenced by my efforts. And yet just the fact that I'm out in the garden, this time I didn't even take my phone out with me, and concentrating on something I love doing, gives me peace. I get so caught up the rest of the world does not exist, which is just what I need right now. You will be glad to know though that I will not be inflicting any of my efforts on you for the next few days as Wimbledon and real life beckon.

To be fair the weather isn't that great at the moment. Although still warm it is dull and overcast and threatening rain. Well it's Wimbledon, would we expect anything less? I am all set though I have strawberries, Pimms and of course Earl Grey tea to see me through the afternoon.

Of course what is given with one hand is almost always taken away with the other and my dishwasher has started playing up. However after a bit of tinkering by Peter all seems well again. It was a blocked something or other that is now unblocked.

While watching the tennis I heard a deafening crash from outside and looked out to see my neighbour surrounded by broken mirror. Ohps, that's seven years bad luck right there. He was not happy.

Right time to go and watch the next match. Andy Murray won his game comfortably and is through to the second round. Now we need to see how the other big names fair.

A Day in the Dumps

Well I did what I said I was going to do and cut myself off from the world for a couple of hours while I painted. To be honest I am much better at painting something I've seen, rather than just using my imagination, but on this occasion I just let the paint flow and was rather surprised to see what emerged. It isn't the best painting I've ever done but at least it's honest and it did allow me to loose myself for a while. Something that was much needed. If the weather holds I might do it again today, we'll see.

My Sunday roast al fresco on a Saturday was actually a hit. Everyone said how delicious it was but I'll not be making that mistake again, the kitchen was like a sauna with the heat. As predicted there was too much meat for just the three of us, however that is not a tragedy, sweet and sour pork will be served up later this week.

While enjoying our lunch we witnessed the most amazing thing. There was a sudden increase in agitation amongst the birds and they suddenly started to drive out of the trees scattering everywhere. Suddenly out of no where this Sparrow Hawk swooped down and daintily plucked a pigeon off the law and flew off. We just sat there open mouthed. OK, I know it is dreadful for the pigeon but we were in awe at the speed and power of the hawk. And how privileged to witness nature at its rawest right there in our back garden. I wished I'd had my camera but in all honesty I'd never have been quick  enough to capture the moment.

This morning I decided to get my drug prep out of the way and did it almost as soon as I got out of bed. The room I prep it in gets the full sun in the afternoon and while this provides some welcome heat on colder days, it means it is far to hot on warmer ones. I don't know why I hadn't thought of this before. It meant both myself and my drug remained cool during the entire prep time. I guess usually Sunday morning is a rush around time getting my uniform ready for work on Monday etc. Not having that pressure certainly helped me consider the problem. From now on uniform prep will be in the afternoon and drug prep in the morning. Simples!

It feels strange knowing I don't have to go to bed early tonight in order get up early tomorrow. Or that I have to get my uniform ready, or make sandwiches etc, etc. To be honest I washed, dried and ironed my uniform on Friday so that task wouldn't be hanging over me and I could actually forget about it for my whole holiday. There is nothing worse than travelling home thinking 'I've got to do this and I've got to do that'. And of course the bonus of having the new drug is that I can take less stuff with me and I don't have to rush home by a set time. As long as I make it before my cassette runs dry I will be fine. It's a strange freedom but a better one than I had. However before I take off I've got a few days of wind down which are really, really needed. I'm like an over stretched spring at the moment.

On Friday we move Andrew out of his college digs for the very last time. Although he still has his final placement to do, he's decided it will be cheaper to travel from home than pay for an extra six weeks accommodation. It also means all his food will be prepared for him and his uniform will be magically washed and pressed by the laundry fairy, He's not stupid is he? From here on he will be living with us while he saves up for his own place, following Laurence's footsteps.

Today, apart from doing some more painting, I will be making some strawberry and raspberry frozen yogurt. The ice cream from last week is almost gone and as I still haven't got a new mixer I can't make anymore. Frozen yogurt requires very little whisking so is easy to do by hand. After that I will be looking forward to the Austrian Grand Prix and a quiet evening on the settee.

I'd better go and get lunch, today something simple and refreshing. Spaghetti with a tomato and basil sauce. Yum!

Eighteen Month Later. Still Waiting.

I never thought this day would come but it has. Today I have waited exactly eighteen months on the transplant list. I know there are people out there who have waited longer, and I know there are those who will never get on the list but it is really hard not to focus on myself and feel down.

The problem is I don't know whether it is better to have a false alarm or not. If I hadn't had the false alarm I'm not sure I would feel quite as bad as I do today. I was just getting my head around it never happening. I was getting on with my life without the shadow of transplant sitting on my shoulder. I'd freed myself of the tyranny of the phone. Life was as good as it could get and although there was a sadness it was a bearable one. Now I feel as though I'm back to square one. I now know what it feels like to have that extreme hope, joy and relief all mixed into one, and I want to feel that again so desperately it actually hurts. Worse I'm now tied to the phone again, jumping at an unexpected call, fretting over running out of battery, checking the volume to ensure I hear it even in the depths of sleep. Last year I went down to Wales perfectly relaxed, safe in the knowledge the call wouldn't come. Now I'm fretting that it will and that is making my trip a reason to be anxious rather than happy. I know Papworth will be able to collect me, from whichever part of the UK I happen to be in when the call comes, but the fear of missing my chance persists and gnaws away like an insect burrowing under my skin. I hate it!

Thankfully I have a chance of distracting myself today. The weather is beautiful and I'm hoping that this afternoon I will be able to sit quietly on the decking with my music plugged in my ears and my paints in front of me and just doodle. Both Peter and Andrew are around the house so if the phone does go I know it will be answered, which takes the pressure off. With a bit of luck I will be able to resist looking at my mobile every five minutes too.

So on the hottest longest day of the summer so far guess what I'm cooking? Yes a roast dinner! I was rummaging around in the freezer yesterday checking I had peas before going shopping. In the process I took several things out of the freezer and placed them on the counter to ease the search. After establishing that I didn't have peas I went shopping and returned to find a huge leg of pork happily defrosting. It was too far gone, it was a warm day despite being overcast, to go back in the freezer so I've had to let it defrost and am now having to cook it. I don't really mind but it is going to feel strange eating a full roast out on the decking. My spaghetti will have to wait until tomorrow.

While out shopping I came across two new teas I'd never heard of, let alone tried. Being a bit of tea buff I bought them to try out. I will let you know how they taste once I've opened them, at the moment I have four different teas on the go so I really should finish at least one of them before I embark on a new one.

Andrew also made a purchase yesterday and one I am really happy about. A new pair of protective trousers to wear on his motor bike. The ones he had were not, to my mind, that protective although they did have the pads around the knees and shins. This pair also has pads around the hips and is also waterproof. Although I still have kittens every time he gets on the damned thing at least I know he's better protected now. For those into bikes his is a Suzuki Bandit 650, nope, no idea either, all I know is it's blue.

Right better go and see how dinner is doing. Next blog tomorrow.

Half Term Report

No one can deny that the first half of 2014 hasn't been my best. It started off badly and has steadily got worse so it's time to kick out the demons of the past and move on. To do that I need to recap and get it all out there, so stick with me, this isn't going to be pretty but it will be worth it in the end, I hope.

January started with a cold and a persistent chest infection. I seemed to live in the GP's and felt really sorry for myself. On top of that my Flolan wasn't being as effective as it had and I seriously needed an increase in dosage. Also because of the Flolan I was still feeling and being sick at frequent intervals. Then I was offered a sliver of hope, a new drug called Veletri. This would give me more time, as it was less preparation intensive, and would hopefully make me feel better, as being stable in air the effects should be constant, not tail off over the course of twelve hours as the Flolan did. This bit of hope was swiftly taken away by one selfish idiot on the panel who approve drugs for patient use so I was back to waiting, I felt down.

The drug did not materialise in February or March either and my health continued to fail along with my usual optimism and my hope for transplant. I knew I was in trouble when I started to miss days at work simply because I was too tired to drag myself out of bed.

April arrived and I'd finally managed to shake off the chest infections  and then a minor miracle happened. I got a call from the hospital telling me my drug had finally been approved and could I go in the following week to get it. Could I? I would have crawled on my hand and knees that very day if it meant feeling better. Anyway crawling wasn't necessary and I was soon sitting on a hospital bed preparing the new drug under the watchful eye of my nurse specialist. After waiting around for a few hours to make sure there were no ill effect, I am notorious for being allergic to almost everything, I was sent home. The immediate effects were obvious, only having to prepare my cassettes once an week meant I had loads of free time in the evenings. Sometimes I'd fly into a panic thinking I'd missed my drug prep. After three years it took a long time to get used to not being tied to the table for an hour every night.

Webs covered with early morning dew

April also saw a turning point in my transplant wait. This time, during my regular visit to Papworth, I saw the top man and as I was still on the downward slide at the time he was not happy that I'd been waiting so long, sixteen months at that point, so decided to do something about it. I was to be tested again to see if it would be possible for me to have just a lung transplant. There would be more risk but at this point the extra risk outweighed the risk of doing nothing. I was to be given more detailed antibody testing to see if any could be eliminated, and scanned to see if my heart and my plumbing would stand up to the more complex lung transplant. I was to return six weeks later for the results.

May arrived and I was feeling happier.My health had improved vastly under the new drug, really this shouldn't happen because it is essentially the same as Flolan but with a new formulation. Obviously this new formula suited me much better. I felt less nauseous too and realised my appetite had improved when sitting in Burger King and finishing off my burger, my chips and some of Peter's too. At last I started to regain the weight I'd lost and soon hit Papworth's target of eight stone, a weight I have managed to maintain. I also felt a bit happier that moves were being made to widen my donor pool and improve my chances. Then a big miracle happened, I got the call. We all know what happened there and I was plunged back into despair.

Being me I handled it the way I always did, I couldn't face what had happened, and I really couldn't deal with it right there and then, so I returned to work. It didn't take me long to realise I'd made a big mistake. The sorrow and distress of my lovely colleagues was so much harder to cope with than my own. I don't think I've ever been hugged so much. Then on Tuesday fate decided that wasn't enough and stamped on me again. I woke up covered in blood and was rushed to the Brompton where they discover my two way connector had split. This was replaced and after a few hours to ensure no real damage had been done and I wasn't suffering any ill effects, I was sent home and told to keep and eye out for infection over then next few days. On the way home my pump began to alarm so, being only ten minutes from my home we continued our journey and phone the hospital. I was rush back for the second time that day. I'd developed a blood clot in the line. By the time I reached the hospital I'd managed to clear the clot myself by forcing the medication through. I was kept in overnight and sent home with a clean bill of health the next day.

This time I did not return to work. I was exhausted, I can never sleep in hospitals, and the reduction in medication, they'd worked out that I had not been getting my correct dose for over ten hours, had left me breathless. I was ordered to stay at home until my breathing returned to normal.

Three days later I was back in Papworth to get the results of my tests. I was suitable for just lungs so, although I was prioritised for heart and lung with an option of just lung, I was now swapped over with the priority being lungs. It will be risky but the time has arrived where I cannot wait much longer so it has to be done.

I left Papworth with very mixed emotions, OK my chances had improved but what if that call was my only chance. I decided not to think about that and did what I do best and returned to work. It was not a good idea. My mind is clearly on something else. I'm snappy with callers, I have no patience and I'm forgetful and my concentration has gone to the wall. This of course distresses me more because I've always tried to do any job I've had to the best of my ability and right now I'm not able to do that.

So I've done what I should have done from the beginning and taken time off. To be fair I'd booked these two weeks last year but they couldn't have come at a better time. I need to take time out and just think things through. I can't let go and move on until I face my situation and deal with all the emotional fall out. Only then will I be able to pick myself up and prepare myself for what the future holds. I'm sincerely hoping the second half of 2014 will be better than the first. Surely, surely I'm due a break, hell more than a break, some good luck for a change.

July here I come!

The Art of Complaining

My ice cream production has been brought to a sudden stop. Not because I am unwell, not because I've run our of ingredients or room in the freezer. No, it all came crashing to a halt when my hand mixer died on me.

This is not an old mixer. I bought it about three years ago, when hand mixing cakes etc became too much. I've used it an average of two times per month so was expecting it to last at least five years, hopefully ten. So imagine my surprise when, happily beating egg yolks, I felt a searing pain in my hand and saw the rubber grip melting around my fingers. The machine was dropped and my hand shot under the cold tap where it stayed for a full fifteen minutes. Once my hand and the machine had cooled down, thankfully my hand suffered no damage, I examined the grip and found dents where my fingers had been. I was in shock, it had happened without warning and so quickly. This morning the mixer's on/off switch is permanently fused in the 'off' position, which is probably just as well. Yet another complaint email fired off.

Today I'm making frozen yogurt instead, which does not require the beating of egg yolks or anything else. I'm also making cannelloni so we are having a truly Italian feast today. I had hoped the weather would also get a little Italian like so we could eat out on the decking but it's wet and damp so that plan has gone to the wall too.

As I seem to have been complaining to different companies, for what seems like months, I thought I'd share my top ten tips with you.

1) Never complain straight after an incident. Next day is far better as you will be calmer and less emotional.

2) Take as many pictures as you can, if appropriate, of the thing you are complaining about. I once took pictures of a filthy Burger King and got a profuse apology and loads of vouchers.

3) Stick to the facts. Explain what actually happened without expanding to what might have happened. So if you find a beetle in your salad say so, but don't include things like 'if I had eaten that I might have had an allergic reaction' because that only might have happened, it hasn't actually happened. You cannot be compensated for 'if's'.

4) Do not ramble or use emotional language. If you've been hurt state how the injury happened and again include pictures. There is no need to say how upset you are, that will be a given.

5) If possible include the make and model number of the item, and serial numbers if possible, so the company knows exactly what you are talking about. If it is food, take pictures then put the offending item in a clean sandwich bag and freeze it. This is evidence and if you can't take it back to the shop immediately it may deteriorate along with the bit you are complaining about.

6) Don't threaten things like Trading Standards in your first letter. This is the ace up your sleeve if they refuse to take your complaint seriously. Give the company time to respond with a solution, 28 days is reasonable, then write to Trading Standards, include a dated copy of your original complaint.

7) Find out who the CEO is and address your complaint directly to him. He will pass it on but won't like the fact you have his name so he will want you dealt with as quickly as possible. Doing this is likely to get you a quicker, more positive response.

8) If you can write rather than email. A letter looks better and your complaint is more likely to be taken seriously.

9) Spell and grammar check before you send. Again a well written, polite letter is going to get a much better response than an ill formed rant.

10) Never, ever demand things. Let the company come back with an offer. If the offer is a reasonable one accept with grace and write a letter of thanks for their cooperation. By reasonable I mean proportionate, so if you are complaining about an item that has failed within the first year of use then you should expect a replacement. If it is a few years old then maybe a partial refund would be the most you could expect.

Hope that helps anyone who needs to complain but is not sure of the best way to go about it.

It seems that England lost their opening match to Italy, so they are on form then. I suspect they may well be out of it by the end of the month. No wonder no one is getting excited.

In other news there has been much sadness in the Roberts household over the passing of Rik Mayall and Sam Kelly. Rik was best known for his role in the Young Ones whilst Sam played the brilliantly funny Captain Hans Gerring in 'Allo, 'Allo. Both these men were taken before their time and the world will be a little less humorous with their passing. Thank you gentlemen, for making me laugh so hard my ribs hurt. You will be greatly missed.

Well it's almost time to get going on preparing that cannelloni. My next scheduled blog will be next Friday. Take care and of course I will let you know if call number two comes along.

We All Scream for Ice Cream!

It's been a very annoying week all in all.

From Monday to Thursday I struggled to get up in time for work, routinely sleeping through my alarm. Friday and Saturday, wide awake at the crack of dawn. At six thirty this morning I was in my kitchen making ice cream. What is the matter with me? I've longed all week for a lie in and now I've failed twice in a row. I mean there must be something wrong with you if you are up making ice cream before eight on a Saturday, right?

Yesterday it was really hot and I mean really hot. Temperatures hit 28C in my back garden. It was great for getting your washing dried but far to hot for anything else. So, on the hottest day of the year so far, I had to go to the Warfarin clinic. Fortunately being up so early we arrived at just after eight, had no trouble parking and I was in and out in a blink of an eye. Mainly because I was the only one stupid enough to turn up the minute they opened the doors. We then went on and did out grocery shopping and were home before ten. Result!

For once I'd warn a skirt and had dug out my sandals from last year. I don't know what had possessed me when I got them but, once I'd dusted them off, I decided they were horrible. They were flats with thin leather thongs keeping the base of the shoe on your foot. Nothing wrong there, I usually go for the flip flop style as I like to go barefoot around the house and need something I can just slip on when venturing outside. However they were all I had so I put them on, making a mental note to get some new ones as soon as we next ventured into a shopping center. It was when I tried walking in them that the problem really became apparent, either my feet had shrunk or the leather had badly stretched as I could not keep them on my feet. I was sliding all over the base of the sandal and every time I lifted my foot up the sandal stuck like glue to the ground only slapping back into place seconds before I put my foot down. Not only were they uncomfortable, they were dangerous so in the bin they went.

I had to find something though as it was far too warm for jeans and trainers. Another rummage in the back of the wardrobe produced some fit flops I'd purchased about three years ago. They were not pretty but they fit perfectly and were comfortable so off we went.

Smirnoff totally relaxed in the sun

After lunch we ventured into Milton Keynes briefly, to pick something up from John Lewis, and to have a quick look around. It was there that I discover the joy of Birkenstocks. I decided just to have a tentative try on and was hooked. So in the bag they went and I am delighted. Some people will think they look a bit clumsy but they are just my style.

So with happy feet I arrived home and set about making some ice cream. I bought an ice cream maker last year and the results were awesome so I made a batch of plain vanilla and another of strawberry. Later on I intend to add a batch of raspberry and then move on to a peach frozen yogurt and if I have time a strawberry or raspberry version. OK, so making it yourself is a bit time consuming but at least I know that everything I put in mine is real and not a load of e numbers and flavourings. Laurence is coming to lunch tomorrow so I will be serving my ice cream with fresh fruit and wafers, delicious.

I had hoped that we could enjoy our family lunch al fresco but it seems the weather has put paid to that, again! It's like going from the sublime to the ridiculous, one day you're a slapping on pints of sun cream and then next you're pulling on wellies. So instead of sitting quietly in the garden with a book, listening to bird song, I will be hunched up on the settee watching the tennis, that if it's dry enough at Queens.

There is light at the end of the tunnel though. I have one more week at work and then I have two glorious weeks off. If the weather improves, please, then I'll have plenty of time to enjoy the garden, if not then there is Wimbledon to look forward too. I'm also planning a trip to Aberystwyth to see my mum and sister. Last year the weather was beautiful, this year, well I might just take something warm and waterproof.

I settled down to watch one of my favourite programmes last night and was horrified to find, not only had I missed it, but there were four hours of football in it's place. If the match doesn't start until nine why does the programme start at seven thirty? Can anyone answer that? It's not as though we don't get enough football ruining our TV viewing as it is, now we have the world cup to contend with. I know that motor racing and Wimbledon sometimes encroach on the running schedules but it is very rare, and only when something exceptional has happened which warrants extending the programme. With football it is practically every week!

Having said all that, this year's world cup hasn't captured the national imagination as previous world cups have. There is no longer the wild, and continuous, speculation over whether England will win. No one expects England to win anymore and I think that is the problem. People are getting very fed up of seeing these pampered, over paid, (mostly) ill educated children run halfheartedly around the pitch and having toddler tantrums if someone messes with their hair. Back in 1966 most of the players were amateurs playing only for the pride of representing their nation. Maybe that's the answer. Only pay the players if they win.

A recent poll showed that four out of ten of us has no interest in the 'national' game, while a third will not be bothering to watch any of the matches. What a turn around! Last time every pub was festooned in flags and everywhere you went there were cars and van flying flags. This year neither of my village pubs are flying flags and I've only seen two cars with them. Maybe this will change if England gets through to the second round but it seems no one is expecting that either.

Right time to get lunch prepared and then I can settle myself down for some tennis. Next blog tomorrow.

Oh! What a Circus!

I am pleased to report that Bernard Jordon has made is safely back to his care home and received a hero's welcome.

So with that happy conclusion to a lovely story what else happened yesterday?

Well not a lot to be truthful. The predicted, promised, storms never materialised for a start. In fact by midday the drizzle of early morning had cleared and, whilst the rest of the country may have been pulling on wellies, we were basking in bright sunshine and high temperatures. I would have loved to have sat outside but the decking and furniture were soaking from the overnight rain so I had to content myself with a kitchen chair on the patio, not exactly the most comfortable to relax and read in but at least I was outside. In case you are wondering, the furniture is wooden and although varnished still feels damp for a while after getting wet. However today started with bright sunshine so there is every chance of me escaping for a long spell of sun bathing this afternoon.

I did manage to have a Skype chat with my sister, albeit a short one, and we finalised a few more details of her visit. I also managed to ask her about her vegetarian diet and what I could and could not include in her meals. It seems she is extremely found of peppers, as am I, so I will be looking up some recipes in advance. We also talked about what to do should I get the call either before or during her visit. We've decided that if that happens, then she will still come down and will look after the house and Smirnoff, enabling Peter to spend more time at the hospital with me. Of course a call would not be ideal at that time but you have to take it as it comes and everyone understands that plans may be changed or cancelled at a drop of a hat.

Before Wendy comes here I'm going there. Yes it is nearly time for my annual visit to see my mum and catch up with friends and relatives back in Wales. I used to go three or four times a year but being ill means visits have dropped off as I struggle to find a period then I feel well enough to travel.

Last year was a triumph with both me and the weather behaving themselves. This year I'm hoping for the same but going on the current weather I'm beginning to doubt I'll be that lucky two years running. Going away is a nervous time if you are on the transplant list. You have to leave details of where you will be with the hospital and makes sure you are contactable at all times. Difficult in an area where mobile signals are not all that reliable. Last year I was quite relaxed because I didn't think I'd ever get a call. Now I've had one I'll be a bit more unsettled because this year my donor pool has been widened so I've got more of a chance. I think it's going to be difficult to relax to be honest but maybe the more laid back approach of life in a Welsh seaside town will rub off and I'll be a lot less tense than I think.

Britain's Got Talent, The Final

Well what can I say? The best act won? No, because they didn't.

Personally I'm rather against singers on BGT. We have at least two dedicated singing shows already in The X Factor and The Voice, surely BGT is for everything else, or at least it should be. Instead the final was dominated by singers and dance acts (yawn!), the only real variety was the impressionist, the magician and the violinist. I'd have been delighted if any of those three had come top but no, it had to be another boy band. Admittedly a rather different type of boy band but a boy band nevertheless. However I'm rather jumping ahead here so lets look at how the acts did.

First up was dance act The Addict Initiative with their version of Hansel and Gretel. To be honest I only got what was going on once Amanda mentioned it, up to then I thought it was just an awful mess.I was not impressed. Then, in no particular order, we had the impressionist and he was just brilliant, he even mimicked one of the other acts. I was so sure he would win. Then the magician whom I felt let himself down by not actually doing any magic. Basically his effort was an escape act and despite Ant and Dec's best efforts to raise tensions wasn't as scary as they's like us to think. The so called 'bear trap' looked plastic from the start and when it finally clanged together it did so without any force at all. I think the most damage it would have done if he hadn't got out of his bonds was give him a gentle squeeze.

The fabulous Lettice Rowbottom was brilliantly dotty as always but boy can she play the violin, it was magical, in fact far more magical than the magician. The dancing granny had me cringing as I imagined all sorts of potential injuries as she was thrown around by her much younger partner. The French men in high heels were good but rather bolshi and didn't take well to being buzzed. Unfortunately their first dance was their best and they went home. Other acts who didn't improve were the two school boy rappers, who even performed their audition song, which gave the impression that they were very limited. The kid with the guitar got my back up by ruining yet another song.

So we were left with two boy bands and an opera singer. To be fair the opera singer was both very pretty and very good but she was no Susan Boyle and lacked that certain something. The boy bands were both good but I preferred the four piece Jack Pack to the winners, five piece Collabro. Another year, another act destined for brief fame and then a rapid sink back into oblivion. As I said there were no Susan Boyles this year.

Time once again to go off and get my meds done. I know it is only once a week now but I still hate it. Will I ever be free of this metal monster by my side I wonder. 

The Big Bang Theory

Despite numerous warnings, and hysterical mutterings about getting a month's worth of rain in one hour, all we've managed to achieve in the Bedfordshire bubble is a bit of drizzle. Now don't get me wrong, I don't want to be flooded out but I do love a good storm so I'm a little disappointed at the moment. However it is still early so there is plenty of scope for something more dramatic.

I have a theory about all the weather warnings we get these days. I'm convinced that the weather people, or Meteorologists to give them their proper title, go into overdrive in order to justify their air time. After all it would be boring just to stand there and tell us we are in for a bit of rain. It always has to be a 'downpour' of biblical proportions, or snow six feet deep etc, etc. What happened to normal weather, why does everything have to be a crisis now and what's with those weather warnings? Even if we get a spell of hot weather they are still at it, warning us to slap on sunscreen or keep cool if we suffer from heart problems. Are they medically trained now or what? And we even get yellow or red warning for sun! Seems a bit daft to me, especially when most of us Brits spend fortunes flying out to places to indulge in the weather we are being warned against back home. When did we became such frail flowers and when did weather forecaster become so concerned about our health?

Now don't get me wrong. Being able to tell the weather is a valuable resource for certain areas of society. Farmers are the obvious beneficiaries. Long term forecasts enable them to plan which crops to plant for instance. Those who work out to sea also benefit, and goodness knows how many lives have been saved because a boat has remained in habour because it was warned of approaching bad weather. In the days before accurate weather forecasts it would have been hard luck if you put to sea and got caught in a storm. Power providers also need to know when we are in for a cold snap to ensure there is enough fuel. I'm sure there are many, many more too. However my question is, do the general public really need to know quiet so much? Most of us I'm sure would be happy enough knowing whether we need to take a brolly out with us on our shopping trip, or whether we will need to wear a hat for a spot of gardening, not that we couldn't work that our for ourselves.

However my pet hate is when they tell you 'not to make unnecessary journeys'. What the hell is an 'unnecessary journey'? Is it the journey you make into work? The journey to take your kids to school maybe or the visit to an elderly relative to ensure they are safe and warm with plenty to eat? Do they imagine that, the minute they mention bad weather, we are all going to leap into our cars and race around the countryside like lunatics trying to get into trouble? It seems so. I'm all for progress, I'm all for being warned of unusual weather in order to keep people safe but please, stop turning a normal summer storm into a crisis.

Yesterday afternoon was spent in the garden soaking up the last of the sunshine we are likely to see this weekend. To be honest I wasn't out there for very long but it was enough to lift the spirits. I must say that, apart from that lovely afternoon I spent with Diana, I haven't been able to use the decking at all. The sun only seems to come out when I'm at work or when I'm in hospital. It looks as though we are going to be in for yet another disappointing summer. I hope not, but it looks that way.

As reported yesterday I felt really well, today not so much. I'm a little bit breathless this morning and I can only put it down to the change in weather. Like most PH patients the British weather plays havoc with my breathing and means that I rarely get a sustained period of feeling well. I have to take the odd day here and there and be grateful. As the weather is damp and there is little point in hoping for improvement, I am settling down for an afternoon in front of the TV and maybe another Skype chat with my sister. Now that we know she is definitely coming down for a visit we have a lot of planning to do. All of which will be much easier face to face than through facebook.

Two stories caught my eye in the paper this morning. The first concerns D Day veteran Bernard Jordan, aged 89. Bernard, bless him, was do determined to join his friends and comrades at the Normandy celebrations he did a runner from his care home sparking a large police search. The story goes that Bernard was 'banned' from going by the care home for reasons undisclosed. This intrepid old soldier left the home saying he was 'going for a walk'  having carefully hidden his medals under his coat. When he failed to return the home notified the police and the search began. It seems Bernard joined a coach of other veterans and made his way to France without a hitch. The home later got a call from one of Bernard's friends saying her was safe and well and would be coming home 'when he is good and ready'. Absolutely brilliant! Like most people who live in this nanny state of a country, Bernard must have been sick and tired of being told what was 'best for him', and, showing the same spirit that got him through the war, stuck two fingers up at the powers that be. Good on you Bernard, I hope you had a great time. One question does remain though. The care home says that it didn't 'ban' him but had merely made a mistake and failed to enroll Bernard on The British Legion official trip. Who knows which version of events it true but, given they knew how upset Bernard had been, wouldn't you have thought they would have made every effort to get Bernard there come hell or high water? After all they admit the fault was their's so why not ensure Bernard got there safely rather than him having to go it alone?

The second story concerns an eleven year old boy who is being taken into care because he weights fifteen stone. Fifteen stone! That's overweight for most adults.The parents are being accused of child abuse and claim that it is just his genes. Despite numerous interviews with police and social services they still deny responsibility. The dad, weighing in at twenty stone, and the mum who, and I quote, 'has a bum the size of a black cab' don't even think he's fat and call him 'Wee Chubby'. Mum claims his favourite dish is steamed broccoli and that she encourages him to play more active games on the wii.  Poor child, his school life must be absolute hell. With parents like that what chance has he got of ever marrying and having kids of his own. Not to mention living long enough to do so. Although I kick against the nanny state this is one of those rare occasions when I think there should be state interference because that poor boy is getting no help at all from his family.

Time for a nice cup of Ceylon tea this morning I think. Next blog tomorrow.

D Day

In case you missed it, today is the 70th anniversary of the D Day landings on the beaches of northern France. Now I don't mean to be disrespectful but I am acutely aware that for every victory we celebrate there is another country having to cope with the wounds of defeat. Yes it was a turning point in the war, and yes, we should be very proud of what our grandfathers and fathers achieved that day and all the other days during the two world wars. Of course there should be celebrations but I also think there should be remembrance, not just for the British dead but for all those who died, no matter which side they were on. Quite often the men were not men at all but boys who thought joining up would turn them into men. Then there were those given no choice and those who thought going to war would be better than the situation they were trying to escape. Whatever the reason for them joining up they couldn't have even imagined the horrors they would endure or how much it would effect them and their families for many years to come.

I think in this country we tend to idolise war and view it as Hollywood saw it with lots of glamour and perfectly fitting uniforms. You only have to look at our war memorials to see that. Personally I've never got the phrase 'glorious dead', I used to wonder what was so glorious about being dead and still do. Even with more recent wars we still do it. It is more difficult to hide what is really going on these days because of the improvement in global communications but we don't get to see half of what is happening and so can never really understand what war is really like.

However today is not a day for being picky, so tonight, along with millions of others, I will raise a glass and say a silent thanks to those who allow me to live as I do without fear.

Today is a good day. I don't know if it's because my meds have finally settled down again after my last scare or whether its the weather but I feel wonderful. I managed to walk all around Tesco's this morning without feeling at all wobbly. And my breathing has got to the point where it is almost effortless, just like breathing should be. I asked my nurse specialist Carl why there was such a big improvement and he reckons it's because the new med remains consistently effective for the whole 24 hours instead of tailing off over 12 hours and then me getting a sudden boost when I change the cassette, which is what happened with Flolan.

While at Tesco I came across the most extraordinary character. He was around 50 and was dressed in an Irish flag with an orange, green and white stripped wig on his head. He was also very, very drunk and as happy as Larry. He stopped everyone he came across to tell them how much he loved Ireland and then moved on. He suddenly disappeared half way around and I suspect he'd been removed but he certainly provided a bit of light relief on an otherwise mundane chore.

The week on the whole has been good. I did feel unusually tired on Tuesday but after a good night's sleep picked up again and coped with Wednesday and Thursday better than I expected.

I've done everything I wanted to do this morning and am well stocked up for next week. I've decided to get some stuff in to make some feta cheese salads to take to work as I'm fed up of eating the greasy stuff the canteen provides. I've managed to get myself over eight stone and I've stayed over eight stone for a good few weeks so I'm hoping one week of ultra healthy eating will give my arteries a rest and won't affect my weight too much. In two weeks I'm heading down to Wales for a few days where I'll be eating all the chips with curry sauce I can handle so a little detox beforehand can't do that much damage.

With no hospital appointments, no battles with H@H (or anyone else for that matter) and no taxi duties I am looking forward to a very restful few days without any stress. We are supposed to be having massive storms tomorrow so I've got stuff lined up ready. If the electricity goes out, and here it always does when we have a big storm, I've got a good book lined up. And if we keep the electricity I've got a couple of good films on hand to keep me going. Many years ago I'd be out in it getting water logged trying to get shots of the lightening but that will have to wait until I get better.

Well I'd better get on, I want to get the beds stripped and changed so I really can kick back and relax tomorrow knowing every things been done. Next blog tomorrow.

Waiting, Waiting and More Waiting!

Hands up those who thought this was another moan about not having a transplant call.

Well you'd be wrong! This is an update on the service (so called) from Healthcare at Home. It seems my latest e-mail has hit home and I received no less than three calls from them during the course of yesterday. The first call was from Tracey who had been dragging into work on her day off (pissed off person number 1) to deal with my missing stock. She had been forwarded my email and was profusely apologetic. She told me that warehouse manager (pissed off person number 2) was on his way in to investigated what happened and arrange an urgent delivery. She would discuss a delivery slot when he arrived and get back to me. She didn't think they could deliver today, Saturday, and would Monday do? I decided to be reasonable and replied that as long as it did actually arrive on Monday that would be fine.

Two hours later I got a call from Mike, no not the CEO, the pharmacist (pissed off person number 3) who had been called in to check the items had been ordered in the first place. He could not explain why I'd only got the drug as the rest of the stock had was also on the order. He apologised and then said that they were out of the sodium chloride I use to mix the drug so he will be sending and alternative. I'm not sure what I'm getting but I will certainly be checking with the Brompton before I use it.

Another couple of hours passed and another call from Tracey. They were arranging a special courier (pissed off person number 4) to come in tomorrow, Sunday, and make the delivery. It seems that mentioning you are speaking to a journalist really got them fired up. However I think they think this special treatment will make me stop talking to journalists and that I will just go away. Well boy are they wrong there. We all know that there is going to be more mistakes and more hassle next month and the month after that and the month after that. I'm not stopping until we all get the correct drugs, on the correct day, at the correct time.

Well as I've been typing my order arrived. Most of it is there though in very small quantities. For instance the sodium chloride I use for mixing the drug usually gets delivered in a box of 25 bottles, I was due two boxes,  I have twelve large syringes out of the thirty I need and the one way bung I need hasn't been delivered at all.

So I have sent this.

Mr Gordon

Thank you arranging an emergency delivery of stock for today. It was very much appreciated.

I had been expecting 25 bottles of sodium chloride instead I received 3 50ml bags of sodium chloride which will see me through to Wednesday. Now I knew I was getting bags after speaking to your pharmacist yesterday and I knew I was getting three of them. However what was not made clear to me that they would be 50ml bags. When your pharmacist said he was sending 3 bags of saline over I though he meant the big bags, as you get in hospitals. They would have been awkward but a million times better than the 3 tiny bags I received this morning.

I am also missing a vital piece of equipment the ADAP-Q-SYTE-LUER-ACCESS, fortunately I do have two of those left, one of which will be used today leaving one until the next delivery. As I use 6 per month that means I am five short. Of course this now means more time on the phone to your call handles and even more time off work waiting for yet another delivery.

I’m beginning to feel as though I’m in some bizarre Carry On film. How can one company fail one customer in so many ways in the same weekend? It beggars belief!

A copy of this email, as with all others, is being sent to the Brompton and forwarded to Paul Pennington. I’m sure they are going to be very interested.

I actually feel like turning up at this bloke's office and thumping his table. Of course that would only, at best, get me escorted from the building or, at worst, arrested and neither of those will help my cause. I am trying my hardest to keep it polite and reasonable as I firmly believe being rude doesn't get you anywhere but, by God, it is getting so difficult not to just launch into a foul mouthed rant.

As for the rest of my life this weekend, yes I know, it is difficult to believe I've done anything other than deal with Healthcare at Home, well I've had a bit of excitement there as well.

I've finally worked out how to use skype and spent yesterday afternoon nattering away to my sister. Although we chat a lot on facebook we don't often get to actually speak to each other. Seeing her and chatting away as though we are in the same room was fantastic. I'm sure it is going to open up a whole new world of communication and I can see us having regular chats. My brother is also on skype so I'm going to try and hook up with him as well and then we could have three way chats. It will be brilliant!

Today I'm planning a quiet one. I am cooking a fry up for lunch as I really need some comfort food and then I'm settling down with Harry Potter and a pile of ironing. The sun is out and if it warms up enough I will spend an hour or so on the decking reading before going in to make up this weeks meds, let's not go there.

Tonight will be one of my very rare 'must have a drink' night's. I know it is a school night as I'm in work tomorrow but I really feel I deserve a treat. As always it will be about a thimble full but it is the taste I am after rather than the effect.

Tomorrow it will be back into work and I will be leaving poor Peter to deal with the delivery problems. Fortunately he has most Monday's off so it won't eat into his leave but, of course, it means he can't get on with what he'd planned.

So that's it until Friday, when, no doubt, I will be reporting yet more of H@H mistakes. Hopefully it will be sorted and I can actually relax next week instead of feeling I've been put through the emotional mangle, again!