Money For Nothing

I get asked the most stupid of questions sometimes.

Today I was asked when my transplant op was scheduled and had to explain that transplants are not scheduled but are dependent on a matching donor coming available. My rather dumb neighbour processed this info for a good two minutes then said that she thought there was an organ bank, like a blood bank, where organs were kept in fridges until someone needed them. I wonder how many other people think like this as it is not the first time I've been asked this question, even by health professionals. Wouldn't you have thought with all the publicity transplants get everyone would know, at the very least, that such a thing cannot be planned? I think people just walk around with their eyes and ears closed.

Well Laurence duly arrived for tea Yesterday and stayed until after nine. It was lovely all siting together and watching Top Gear, just like the old days. Andrew made muffins for the occasion and they went down a treat. We had a lovely time and a good old catch up. He seems very settled in his place now and I'm happy at last that he is coping on his own. We've rescheduled the meal and will be going up to his in the a couple of weeks.

Finally I'm feeling a bit better. I haven't had to use oxygen today and only woke myself up coughing once last night. I'm still very much under the weather though and my chest feels like a lead weight. Peter had to do a Tesco run this afternoon as I was craving oranges and we'd run out. Being brave I decided to go along for the ride, just to get out of the house and get some fresh air. It was very quiet, thank goodness, so whizzing around in a wheelchair wasn't too much of a problem but I was so glad to get home. The trip buoyed my spirits but exhausted the rest of me. Being fit for Wednesday is looking less likely by the minute because that is an all day thing while Tesco took all of an hour. If it is as cold on Wednesday as it is today then the campus tour is definitely out as I'd freeze to death in a wheelchair. So frustrating!

In the news at the moment is the row over bonuses. I've always viewed bonuses the same way I view OBE's etc. Why should you be awarded for just doing your job? Bonuses and gongs should be reserved for those that put others first or do something outstanding. I hate is when someone gets an award for 'services to acting', in other words doing their job, however I have no problem with an actor getting an award for charitable work. Bonuses should be awarded in a similar fashion and certainly not be awarded when the organisation is still heavily in debt. Any spare cash floating around should be used to payback the people who bailed the organisation out of trouble, that's us the tax payers by the way, before being given to those already on monstrous salaries. Once all debts have been paid and the organisation is doing well by all means pay bonuses. Once again it is all about choosing the moment and now is not the time to be announcing million pound bonuses when the rest of us are having to mind the pennies.

Also in the news is the fact that university applications are down 10% following the hike in fees. Is anyone really surprised at this? It's all very well saying you don't have to pay upfront but you still have to pay at some point and that will put an awful lot of people off, especially with the job market the way it is. The other argument is that if you don't get a job or don't get one that pays enough you won't have to repay. Again excellent in theory but in practice you still have an enormous debt hanging over you and who wants that? Andrew very nearly gave up on uni because of the fees and it took a great deal of persuasion to make him change his mind, I suspect this situation has been going on all over the country. How long I wonder before a university education becomes the preserve of the well off? Not long at this rate.

I've used so much oxygen over the weekend that I had to order up some more today and guess who lost the number? Half an hour and a frantic search later we found the number on one of the cylinders, yes we hadn't thought to look there, and I now have one huge bottle and several portal cylinders heading my way for tomorrow. Maybe they could send me a brain while they are at it.

A Change Is Gonna Come

Had a terrible night's sleep last night, kept waking myself up coughing then lay awake going through all I'd been told at Harefield. I went there thinking that I wouldn't be too surprised or disappointed if they still wanted to keep me on the back burner for a while longer. Now I am very much bothered and pray that my antibody screen comes back OK. Now I very much want this transplant as soon as possible and know I would be devastated if I were refused.

I knew I was in trouble the moment I sat up this morning. I wasn't just blue I was almost black and I gasped for breathe. I immediately rang my GP to see if I could get an emergency appointment at their Saturday clinic only to find they no longer had a Saturday clinic and were referring all patients to the A & E department of the Lethal and Deadly. Having experienced a five hour wait there before and knowing I wasn't up to waiting that long, and I'd probably pick up another bug whilst there, I decided I'd just have to struggle along until my GP opened again on Monday. However by lunchtime I knew waiting was no longer possible and if I tried I'd end up in hospital, which I really didn't want to do. Fortunately a friend had told me about a drop in center she knew of. It sounded a better option than the A&E but I still had my doubts but I had to see somebody so off we went.

It was easy to find, I actually worked in the building when I first moved to Bedfordshire and it was a Job Centre so I knew exactly where it was, I also knew that parking was atrocious. Sure enough the town itself was chaotic as there appeared to be a football match on and the street where the drop in center was located was jam packed so Peter dropped me at the door and went off to find somewhere to leave the car. I staggered into reception with my oxygen tank slung over my arm and explained the situation. My heart sank when she said it was a two hour wait but then she said that because I had an ongoing condition and I was obviously ill she would speak to the doctor about fast tracking me. She disappeared for a minute and the next thing I knew I was being taken in to see the doctor. I must say I was very impressed with him, he knew what PH was and realised straight away that I was quite poorly. He examined me, asked a few questions and immediately described a different antibiotic at double strength and some steroids, I was so relieved that I'd got help without anyone panicking and trying to admit me to hospital. In future I will definitely use them again instead of suffering over a weekend or bank holiday.

So it is most definitely another few days off work, hopefully not many, and unless there is a spectacular recovery, I will miss out on going with Andrew to his interview at Herts Uni. I am really disappointed about that but Peter will be going with him so not all is lost as I expect I will get a full account when they return home.

Andrew has finally had the dates for his First Responder course. He decided to volunteer as a First Responder when he chose to do a paramedic course as it would give him an insight into what he was letting himself in for and he would pick up some very useful skills such a CPR and how to use a defibrillator. It will also stand him in good stead with the interview panel at Herts Uni as it shows how dedicated he is to being a paramedic that he's going to do it for free. Basically First Responders are trained volunteers who are sent out to emergencies to help until the ambulance can get there. They are used mostly in rural areas where it takes an ambulance over a certain amount of time to get to where they are needed or during busy periods where there are not enough ambulances to go around. They are trained in all the essential skills to enable them to treat heart attacks, stroke victims, cuts, bruises etc. They are given a uniform and a kit and cover a certain radius around where they live. The course is next weekend and I hope I'm well enough to go as it is in Cambridge and I rather fancy taking my camera with me, weather permitting.

In the news is a story about disabled people chaining themselves together in Oxford Circus and causing disruption to Oxford and Regent Streets in protest at the cuts to DLA. I have to say as a disabled person I really don't understand what they are getting so worked up about. From what I have read, those people truly deserving of DLA, or Personal Independence Payment as it will be called from 2013, will receive exactly the same amount of benefit, and in some cases more than they do now. OK so everyone is going to have a medical. If you have a condition that means you are disabled then you should have no worries, if you have been exaggerating you condition, or it has improved and you haven't let on, then you should lose part or all of your benefit. Only those who secretly know they are not entitled need be worried. Unfortunately scaremongering has been rife and now those in genuine need are terrified when I don't think they really need to be.

Personally I will be glad to see those getting DLA for being drug addicts or alcoholics taken out of the system, or at least have it refused until they agree to and stick with a recovery programme of some sort. Nor should it be given to those who are grossly obese. All these conditions, except on very rare instances, are self inflicted and could be cured with help and a bit of self control. It is an insult to those who are disabled through no fault of their own to be classified in the same way and the sooner it stops the better. DLA is not a bottomless pit. We've all read the stories of those claiming to have such bad backs that they cannot walk only to be filmed lifting boxes, running marathons or refereeing football games and we've all been justifiably outraged and wondered when the government will do something about it. Well now the government is doing something to curb that abuse and we are still not happy. I think we need to look at the proposals in detail and really understand what it means individually before jumping off the deep end. We can't expect those undeserving to be weeded out unless the deserving are investigated too and if we want a better system that is less open to fraud we are going to have to put up with a bit of unpleasantnesses.

We were supposed to be going to Laurence's for lunch tomorrow but I am too ill, so he has agreed to come to us for tea. Sometimes I really hate my body.
. 

That's Very Nearly An Arm Full - Harefield Transplant Assessment Day

Well I didn't expect that, still trying to take it all in.

Despite having to tackle the M1 and M25 during rush hour we made it to Harefield in just under an hour. As usual the car park was full despite the early hour but we managed to find a spot on our second sweep and we arrived in the ANZAC center by five past nine. We were greeted by the receptionist who immediately called Nicky one of  the transplant coordinators down to see me. We were shown into a side room where we were given the itinerary for the day and had a quick chat about what to expect in the coming days/weeks/months.

First stop was an ECHO and as we were early I went straight in as there was no queue. Unlike some hospitals here they are quite free with their information and I was informed straight away that my heart, although slightly enlarged, was in very good shape but my pressures (that's the blood pressure in the pulmonary artery) were very high despite being on the Flolan.

Next stop was an ECG, again no queue, and once again it was good news. I have a steady strong rhythm with no sign of any problems.

I returned to the reception desk where I was given two pots and told to fill them, one was a sputum test, the other, well I think you can guess.

On to X-ray, no information given here but I was in and out really quickly and so onto bloods and lung function tests. This is where it all ground to a halt, well it had to happen sometime, and I had a thirty minute wait for bloods with another forty five minutes for lung function. I went into bloods expecting the usual two or three bottles to be taken. Sixteen bottles later, yes I kid you not, sixteen, a glass of water and well done I was back out in the waiting room where I had to sit for five minutes to prove I wasn't going to faint before nipping into lung function.

Lung function was where the good news stopped coming. My lungs are in a dreadful state with very little output in the blow tests. One machine kept flashing "Blockage! Check pipes" every time I blew into it but the it was my lungs and not the machine's pipe work that were at fault, or so the technician said, not sure if I really believe her. After all the huffing and puffing my SATs were through the floor at 70% so they stuffed an oxygen mask on me and made me wait until they recovered.

Back to reception and a short wait and then Nicky arrived to take us to see the consultant. Amazingly most of my test results were back and I was given a run down. Kidney, liver and heart function all normal. My weight is acceptable, phew! Generally I'm in "good nick" so then she chose to drop the bombshell. She wants me to have a transplant as soon as possible. Why? Well this is how she explained it.

At the moment the heart is in good shape, it is slightly enlarged but the size, shape and thickness is all within an acceptable range. The right ventricle, this is the important one for lung transplant patients, is very strong and shows no sign of stress. However, the unknown factor is how long it will stay that way. My PH is very aggressive, hence the rapid upgrade of medication over the last couple of years. Each medication has kept me stable for on average four to six months. I've been on Flolan for six months. At the moment things are OK and if they do start to go downhill again they still have the option of increasing the amount I'm getting. Unfortunately my lack of tolerance of the medication will be a limiting factor for this option and they may never be able to stabilise me again if I can't take the increase. Two years is no longer a viable waiting time and even twelve months would be risking it so she's going recommend transplant within six months.  The reason being that if the right ventricle fails it fails really quickly and it doesn't take long to get past the point of being well enough for transplant. So it would be in my best interests to move quickly.

The one test that is still outstanding is one of the most important, and that is screening for antibodies. The more antibodies you have the greater your chance of rejection. The more pregnancies you've had the more antibodies you have so women tend to be turned down more often than men. It hasn't been a problem before but you do worry about it changing as infections can alter the count and I've had a lot of them this year. I will find out the results of this test next week. If all goes well the next step is a three day hospital stay so they can carry out a lot more tests, such as measuring my ribcage etc.

Obviously just because the consultant wants it done quickly doesn't mean it will be as I will still need to wait for a suitable donor, and I have to face up to the possibility that there will never be a match. At the moment though I'm still in with a chance and will be much further up the list than last time so I'm getting closer, at least I hope I am.

DLA - Top Tips For Getting It - Updated

Re-posted by popular demand I have updated some points in accordance with new information I have come across. Please remember this is a guide or aide memoir and is not guaranteed to make your application successful.  The information contained in this post comes from several different sources. My specialist center, the CAB (Citizens Advice Bureau) and the DWP benefits helpline. Hope you find this helpful.

 1. Do it on-line. This has several advantages (in my case being neater for a start) and is not as difficult as you might think. You will need to register and get a Government Gateway ID and password. But after that it is pretty much plain sailing. I have looked at the form and there are definite benefits to doing it this way. The questions are more detailed but you have more space for your answers so you can explain things properly. You can move back and fore through the site so you can make corrections or add things you'd forgotten. You DO NOT have to do it all at once, there is a save feature so you can do a bit at a time. You will need your ID and password to access you form so make sure you write these down and keep it somewhere safe. Web address http://www.direct.gov.uk then go to the Disabled People link.

 2. Do not sell yourself short. When answering the questions you must think of how you are on your absolute worst day. The day you can't get out of bed, need help to get to the bathroom, eat, take your meds. You may only have a bad day once or twice a month but you have them and they are the days when you need help.

3. Supply documentation. you will be asked to provide proof of medications etc. DO NOT SEND PHOTOCOPIES, they will not accept them. If you have a repeat prescription form copy it, keep the copy for your own use and send the original. If you have drugs delivered by courier send the delivery note, this often has the advantage of having your name and address, the hospital's name and address, the type of medication and sometimes the condition it is for. you will also need a recent hospital report or covering letter from you PH center, again copy it and keep the copy as proof you have sent it. When you have gathered all your documentation pop it in the envelope with a covering letter, the letter should contain
your name and address,
National Insurance number,
the reference number for your on-line application (you will get this when you finally submit your form),
a list of all the documents included in the envelope.
It is a good idea to include results from your latest 6 minute walk test including you oxygen sats before and after to give a clear indication of what walking does to you. Make sure the report does include the sats results though, I made the mistake of sending a report that said I could walk 350 meters in 6 minutes but did not log how many breaks I had (when the clock is stopped) or what my sats were when I'd finished, they reject my application out of hand without reading any further. Include as much information as you can, I would add the addresses of websites that can describe what PH is, though when I did that I was told they do not look at websites so my answer was to print off the relevant pages and add them to the pile. If you have received a renewal or application pack you can send the documents back in that. Make sure you clearly state they are supporting your ONLINE APPLICATION. You are not dealing with rocket scientists and they will need it spelling out to them. Do not staple things together, at most use a paper clip and number the documents to correspond to the list. Again keep a copy.

4. Keep It Real. Be realistic about what you can or cannot do and explain why. The magic cut off point for DLA is being able to walk 50 meters without stopping or needing help. We all know that for those with PH we can often walk further than that but it is what the effort is doing to us that matters. A good explanation (and I borrowed this from someone on the PH website, thank you) goes something like this. " The pressures in my lungs are so great that my heart has problems pumping the blood around my body, the blood does not carry enough oxygen which means that it is difficult for me to carry out any physical activity such as walking, lifting, carrying etc. Walking makes this situation much worse and the lack of oxygen can cause me to become dizzy putting me in danger of fainting and hurting myself." I would still put your distance down as 50 meters even with the explanation as if they see anything above that they are unlikely to read any further. Remember we are dealing with someone with a tick box and no common sense.

5. Don't Lie. Stretching the truth is OK but a blatant lie is out. Firstly your specialist center will not be able to support your statement and secondly if you have to have a medical you'll have to prove what you have said. So if you have said you cannot carry anything and then walk in with a handbag the size of a suitcase it will immediately put your claim in doubt.

6. KISS (Keep It Simple Stupid). Don't use abbreviations without explaining them at least once. It is no good saying you have IPAH because they won't know what that is or bother to find out. Idiopathic Pulmonary Arterial Hypertension followed by the abbreviation should be enough to enable you to use the IPAH only in later questions. Do not use jargon, we might be used to hospital speak but they won't be, explain as though explaining to a rather thick child and you cannot go far wrong. Also there is an advantage in giving your condition its full title. In this case there are three complicated long words before they get to the hypertension bit. A bit difficult to ignore them and put it down as just high blood pressure.

7. Needing Help. Embarrassing as it might be you must lay it on a bit thick about the help you need. you might think you do a lot for yourself but think about it. Does someone bring you your meds with a nice cuppa, set up and/or clean any equipment you use or cook the evening meal because you are too tired to do it yourself? If the answer is yes then put it down. You will be asked how often you get help, the emphasis here must be more often than not. Always put down that you have this sort of help every single day, they are not living with you and cannot prove you don't. If you have a carer say so. Never use words or phrases such as sometimes, occasionally, mostly or 'when I'm really ill' in your answers as they sow the seeds of doubt about how much help you really need. If you are on oxygen then you will need to point out that being on oxygen and near a cooker is not a good thing. When you come to the 'preparing a meal' question remember it means can you get to the shop to buy the ingredients, carry it home, prepare it, cook it and wash up afterwards. If you cannot do all that then you need to say which elements you need help with. If you are on Warfarin then being around sharp knives is also not a good idea. Warfarin use can also be used in the 'walking' question, point out that if you fell and banged your head you would need to go to hospital to get checked out as you are in danger of internal bleeding and possible stroke. This can cover why you cannot walk far and need someone with you when out and about.

8. Meds. List your medications and give the dose eg 25mg and the frequency eg 2 per day. List ALL your meds whether directly associated with your condition or not. The aim is to show that your illness has a significant impact on your life, Taking 6 -7 meds several times a day has a significant impact.

 9. Supporting Statement. It is a good idea to add a supporting statement to your document pack. Do not write an essay, they won't read it, keep it clear and concise. Say which point on the form the addition refers to, 'I wish to expand/explain more fully my answer to question 12b' helps them focus on what you want to say. Make sure you have used the word 'terminal' in at least on of your answers. If you have not given a simple explanation do it here. you can use the explanation I gave earlier on and repeating yourself is not a bad thing in this case. You should also add this (again borrowed, thank you, thank you) 'This is a rare condition with only 4000 out of 68 million UK residents diagnosed. There is no cure for this condition except for transplantation but sadly many died before donor organs become available." If you are or have been assessed for transplant say so, it doesn't matter if you are not on the list yet.

10. Check before sending. Check, check and re-check the form before submitting it. Even get someone else to check it for you as another point of view can be helpful.

My thanks to Annie and Tracie from the PHA forum http://www.phassociation.uk.com for the additional information.

 

Ah Grasshopper!

I am worried. I have my appointment at Harefield tomorrow to be reassessed for transplant and I still have this bloody chest infection. I am definitely better today than I have been but my chest is still painful and feels really  clogged up. This time it is taking longer to clear and I have a feeling I'll need more antibiotics as I can't see this being fully gone by Sunday when my current course finishes. What really worries me is how weak I'm feeling. I don't have the energy to do anything and all I do is sit in front of the TV with my laptop. If I do try and do things my chest aches like hell and I feel light headed. The funny thing though, I don't feel all that breathless. My breathing has been much worse than this with milder infections, it's very strange and I wish it would just bugger off.

Going for assessment is fraught enough as it is. You worry about being turned down because you are too ill, you worry you will be turned down because you are too well and then you worry that they will find something the excludes you all together, like too many antibodies or something. I know that they are planning to do some lung function tests and wonder how much my infection will affect the results, will they be able to tell what is infection induced and what is PH induced? What I'm most worried about is that they decided I'm too ill for assessment and re-book me. Not a tragedy I admit but bloody frustrating when you've been waiting so long.

Andrew came home with another grin on his face, his Biology exam went as well as his others so he is confident of good results, fingers crossed he's not wrong. He is off to try out a new martial arts club in Barton tonight. He has been going to one in Luton every Monday, which he still attends, and one in Bedford every Tuesday. However he has decided to stop going to the Bedford one as it had no structure and he didn't feel he was learning anything. There was also a boy there who kept trying to sell him drugs, Andrew is very anti drug and was annoyed at this boy's aggressive manner. The final straw came when this boy brought a chain to the club and threatened to use it on Andrew who for some reason he saw as a threat. I think he might have been top dog at this club and when Andrew turned up with his black belt had his nose put out of joint, whatever the reason it made things there very unpleasant. So Andrew decided to look for something closer to home and found a club that meets in the middle school Tuesdays and Thursdays. He's decided to go to the Thursday session to give himself some recovery time between meetings. Sounds good to me.

The cats have finally got over whatever it was that was bothering them and peace reigns once more, they have even been seen napping together. Aww bless!

This afternoon it came over all warm and sunny so I wrapped myself up and took a slow turn around the garden. My word did it improve my mood and health! While out there I refilled the bird feeders, hung out a few more fat balls and scattered some seeds and nuts around the lawn for those birds that don't like hanging upside down to eat. By the time I came in I felt a lot better, maybe I should have gone out to Tesco with Peter yesterday after all.

One of the news stories that I enjoyed today is that of a Brazilian bank robber who managed to shoot himself in the foot. This idiot was guarding the doors while the rest of the gang were busy inside. For some reason he had two guns which CCTV shows him playing with until one accidentally goes off. Showing that there is no honour amongst thieves he decides to abandon his mates and limp away to hospital leaving the gang without their lookout man. After viewing the footage all the police had to do was wait for the hospital to report a man with a bullet wound in his foot and then go along and arrest him. What a prize twit!  I love stories like this, it proves that sometimes bad things happen to bad people.

There will be no blog tomorrow for obvious reasons but watch out for Saturday's, it should be interesting.

Sun, Sun, Sun, Here It Comes

I am feeling miserable. Kept waking myself up in the night coughing, which has left me feeling tired and irritable. As usual I expected too much and hoped for a slight improvement today but if anything I feel worse. I have only had a full day of antibiotics so I don't know why I'm feeling so aggrieved, the sensible me knows it takes at least three days for any improvement to show. I'm just so annoyed that it has happened this week when I'm supposed to be going to Harefield on Friday. I keep telling myself that as long as I'm back on my feet by then that is all that matters. Unfortunately the impatient me is not taking any notice and still wants instant results.

To add to my worries I'm off my food. This is a big blow when I've only just managed to put on weight again. I am forcing myself to have milky drinks and defrosted some home made soup but I only managed half of it before feeling full. I weighed myself this morning and I haven't lost anything yet but I will be keeping a close eye on things.

I don't know what is wrong with my two cats. They have been chasing and fighting each other all day and it is now beginning to get on my nerves. They don't really get on but tend to leave each other alone for the most part. Sometimes they tolerate each other enough to share the same bed on a cold day, albeit at opposite ends and corners. Now they have descended into open warfare and for two elderly gentlemen to be throwing each other around it is a little worrying. Whatever it is I hope they get over it soon before they manage to injury each other as a trip to the vet is just what I don't need right now.

I got the dates of Andrew's exams wrong and was mighty surprised when he announced that he would be late home because of his Physics exam. He seems pretty confident, I hope it goes as well as he felt the Psychology exam went last week.

When Andrew arrived home this afternoon he had a big grin on his face, once again he got all the questions he was hoping for. I really hope he's done as well as he thinks he has. Last one, Biology, tomorrow then he can relax for a while before gearing up to do it all again in June.

In the news reports that a 'massive' solar storm is heading our way after the biggest eruption on the Sun for six years. Apparently we can expect disruption to communications, as some satellites will be effected, and power outages. GPS systems could also be unreliable during this period. My question is will we notice the difference? My phone loses signal if I happen to sneeze and places like John Lewis in Milton Keynes have always been a black out zone. And we've all read the stories about stupid drivers who have let their satnavs lead them into rivers, fields and down narrow lanes. The best thing about this event is that more of us will get to see the Northern Lights or Aurora Borealis. They have already been seen as far south as Northumberland and could move even further south over the next couple of nights. I doubt very much they will reach Bedfordshire, which is a pity as I'd like to have seen them.

Peter has discovered that we are about to have a crisis, we are down to our last bottle of lemonade. Oh the horror! We both enjoy drinking orange juice and lemonade and have at least two glasses each during the course of the day and as I've been told to keep my fluids up I've been drinking more resulting in the shortage. As I'm not well he is going to have to face the scrum in Tesco on his own tomorrow which he hates. Though who knows, I might feel up to a trip out in the wheelchair. We'll just have to wait and see.

Keep Calm And Carry On

Well I guess that explains why I was so tired yesterday. Yes I've got yet another chest infection and so am starting my fourth course of antibiotics in three months. Would I say I was pissed off? Yes I would! I've been given a different type this time, I'm usually on Cefalexin but this time I'm on Doxycyclin which my GP assures me will 'kill the infection stone dead.' That's if the infection doesn't finish me off first of course. At least I avoided steroids this time as my SATs are normal for me (normal means anything between 85% and 95%) and there is no wheeze. A small triumph but a triumph nevertheless. The rest of his advice was the same, rest up, drink plenty, keep warm, use your oxygen if you need to. I'm upset, angry and disappointed but I know I have no choice but to do as I'm told and hope it passes quickly.

Andrew got his information pack for his interview at Herts Uni next week. He is trying to act all cool but I can tell he is really excited about it. He is still hitting the books, with the exams being held this Wednesday and Thursday not long to go, thank goodness. I like to see him studying but I do worry about him doing too much and burning out before the big day. Fortunately he does have his hobbies and has decided to go to karate tonight which will give him a much needed break.

So with nothing to do except sit and watch TV it has been a pretty boring day, but not a quiet one. Our neighbour had a TV aerial that went through his roof and was attached to the wall inside the loft. During the recent high winds this aerial came off and took some of the wall with it. After a bit of haggling he finally got an insurance payout and today the wall and aerial are being fixed. Naturally enough the process comes with a great deal of banging, drilling and assorted other noises. The planned afternoon nap had to be shelved and I settled for a doze on the settee during Doctors instead, much to the delight of Tarmac who chose to join me. I woke up sweating buckets and thought something was really wrong until I realised I had a hot, furry body draped over me. I did feel better when I woke up and wondered if the cat had something to do with it. My mother is a great one for 'sweating' a bug to kill it off and used to cover me in blankets and feed me hot soup and cups of warm blackcurrant when I had a chest infection. She said that raising my temperature killed off the bugs, I think it nearly killed me off a couple of time too. However I'm now beginning to wonder if she had something there as I do feel a bit brighter this afternoon. Peter says it is wishful thinking and I probably just needed a sleep. He's probably right.

In the news the story that caught my eye was a report that the Houses of Parliament and Big Ben in particular are slowly slipping into the Thames. Cracks have recently appeared in the Grade 1 listed building and the clock tower is leaning, half a meter at it's tip. These are indeed worrying signs and the subsidence is thought to have been cause by the extension of the Jubilee tube line and the building of a massive five story car park. Of course the knee jerk reaction has resulted in rumours that MP's will move out to new offices and the building be sold to private investors. As if that is going to happen. A more balanced view is that MP's might be temporarily re-homed whilst renovation work is done. That sounds more plausible but is there any reason for MP's to move out? They are all on holiday for three months every summer so why not do the work then? However I'm with Professor John Burland of Imperial College who has said "I calculated that it would take 10,000 years to reach the inclination of the Leaning Tower of Pisa. It's moving incredibly slowly and always has done so and there really is no immediate danger at all." There you go, keep calm and carry on.

I'm So Tired, My Mind Is On The Blink

Well I survived my first eight hour shift, just. I am so tired I can barely move, who'd have thought that one extra little hour would make such a big difference? I'm really glad I tried it though, I can do it and now it is just a matter of getting used to it. If I can get through the next three days without a blip I'll be well on my way.

The days are getting longer. Driving into work at seven this morning meant I set off in the dark but arrived as dawn was breaking and coming home at four it was still light almost all the way. I love it when you start noticing the first signs that summer is approaching. The trouble with me is I can't wait and day dream about sitting out in the garden with a good book and a cold glass of Pimms. Each year I am disappointed as the summer never turns out to be as good as you hoped. Maybe this year will be different.

I arrived home to find the dining table covered in books, Andrew has been studying hard all day. I'm glad he isn't giving up and is pushing himself to get as good a mark as possible.

Got our weekly phone call from Laurence, we have been invited up for a meal next Sunday and he's cooking. Something to look forward too, I wonder what we'll have? My bet is pasta.

In the news is the horrific story of a six year old girl who got her ear bitten off by a pit bull. The cowardly owner did a runner but has now handed himself in to police. I was expecting some teenage thug but it turns out to be a fifty six year old who is now under arrest. I don't know what will happen to the dog, it will probably be destroyed which is sad for the owner and the dog. I don't believe any animal is evil but I do believe no animal can be completely trusted, especially around children. Even the most docile mutt can deliver a painful nip if over excited and small children can easily be knocked over by the bigger ones. A dog should be allowed the occasional free run but you have to chose your time and place and that is not a Saturday afternoon when the park is full of children playing.

The man and his dog will both pay for the man's thoughtlessness, unfortunately the dog will probably pay the ultimate price for something that really wasn't its fault, dogs do what dogs do, it is up to the owners to keep them out of trouble. As for the child and her parents, well they will live with the scars both physical and mental for the rest of their lives. The child will probably always be terrified of dogs and the parents will now view every dog as a possible threat. Thankfully surgeons can do wonderful things these days so hopefully her physical scars will eventually fade. As for the wider effects no doubt there will be a rise in reports of dogs running lose as the public go into panic mode. This always happens after a dog attack and I can understand why. However it is curious that dog owners seem to be immune to public feeling and don't get the message about keeping their dogs on a lead even after a highly publicised event like today's.

Lasagna for tea today then a long evening in front of the TV before early to bed. I won't bother looking to see if there is anything good on, chances are I'll end up sleeping through it anyway.

You'll Like This, Not A Lot...

Yesterday's trip to the Brompton went better than expected thought the drive in was a nightmare. Everything was flowing well until we hit Oxford Street and we sat there for a good twenty minutes before slowly inching forward only to find the reason for the delay was road works reducing three lanes to one. Typical!

I was a little late arriving but only by ten minutes or so and as I always have to wait at least thirty minutes before being seen it really made no difference. I need not have worried about getting my meds increased as tests show I am stable on the dose I'm currently on and increasing it wouldn't make any difference at this stage. It was explained that they would rather keep me on as low a dose as possible to avoid side effects and to give them maneuverability to increase the dose should I start to slide downwards again.  Needless to say I was delighted with this decision and the fact that I didn't need to fight them to get what I wanted. We discussed the upcoming visit to Harefield and I was rather surprised to find that my case has also been passed to Papworth and Newcastle as backups. The reason, I'm told, is because my heart is currently in the best shape it can be to withstand the rigors of transplant. No one knows how long this will last and once it slips if I'll ever be in such good shape again so it is a case of striking while the iron is hot. We then discussed a range of new meds that are about to hit the market. The first to come in, sometime next year, is air stable Flolan. Now this may not seem a great leap forward as it will still mean a pump and all that goes with it. However it will cut down the time spent mixing and preparing the drug as you will be able to make up a whole weeks worth in one go and keep it in the fridge. So instead of forty minutes to an hour every night, a couple of hours once a week will be all it takes. The second big innovation is Flolan in tablet form. Trials have been going well though there is some difficulty with side effects, especially nausea. As the drug is delivered directly into the stomach I'm not surprised, however they appear to be getting on top of that now and the drug is expected to be available in two or three years time. At the end of the consultation I was told that I probably wouldn't need either of those things, intriguing, do they already know something I don't? I'm so well that they have decided not to see me again for three months, with the proviso I call them if something changes of course. Three months? I can't remember when I last had such a long break between appointments, it is great news but scary at the same time but at least it is an indication that they are no longer worried about me, well not as much anyway.

And so I look forward to next Friday and Harefield, I do hope it is good news, the doctors at the Brompton have given me renewed hope that things will start to move more quickly than they have done in the past. However, even though they are sister hospitals, they are different and may not agree on time scales. All I can do is wait and keep my fingers crossed.

Andrew got a letter from Herts Uni with his itinary for his interview day. He's going to be given a tour and get a chance to talk to students already on the course. He's trying hard not to show it but he is really excited about it and I'm so pleased for him. I just hope the interview is successful and he gets in because going through clearing can be more stressful than not getting in at all.

A trip out to the shops this afternoon didn't last long. The roads were quiet but the shops were manic and we nearly hit a child in the car park. He decide to bend down to tie his shoelace right behind our car just as we were reversing out of the space. Luckily Peter just saw him in time. Idiot!

In the news the story that caught my eye was 'Magician Paul Daniels cuts off finger'. Eww! What a horrible thing to happen but one that is all too common it seems. What got my interest was that he picked his finger up, jammed his badly damaged hand in his pocket, ran to his car and drove himself to hospital. How? If I did that I'd be rolling about in agony, I certainly would not be able to drive myself anywhere. I don't like Paul Daniels but it takes a certain type of courage to do what he did. The good news is the finger has been successfully reattached and he is well on the way to recovery. Good for him.

This afternoon I made a lasagna for tomorrow so Peter and Andrew can just stuff it in the oven as I'm working, my first eight hour shift. I wonder how I will cope.

Ohps, I Did It Again

I did a very silly thing today. I went out and forgot to take my house key. I only remembered when we got to Tesco and I mentioned it to Peter who then said he hadn't brought his because I always have mine. In the twenty plus years we've lived in that house we have never locked ourselves out before. We knew there was no chance of breaking in, well not without smashing a window and as they are all double glazed even that would be difficult. In the end we decided that the best thing to do was finish our shopping, go and grab a coffee from somewhere and wait for Andrew to come home, hoping he'd remembered his keys. Of course there was a complication, isn't there always, and that was that Andrew was doing the first of his A level exams this afternoon. It was quarter past two when we realised we were locked out and Andrew would not be home before three thirty. After we ran out of things to do we drove home and sat in the car on the drive and waited for Andrew's return. Ten to four he finally sauntered down the road, thankfully with key in hand. Naturally he found the whole thing hilarious.

It seems all the revision has paid off as the exam went really well, he got all the questions he was hoping for and is confident of getting a good result. He now has a week off before he has two others one after the other. He is taking a well earned break this evening before hitting the books again tomorrow. Today's exam was the one he was worrying about most as Psychology is his weakest subject. He is really strong in the next two, Biology and Physics, so I don't think he will be quite as anxious about them. However he knows that in order to get onto his course he needs a minimum of three C grades so he can't slack. After next week he gets three months grace and then has to go through it all again in May for his finals. It's going to be a stressful few months but it will be worth it in the end if it gets him where he wants to be.

Aside from the excitement of locking myself out it has been a pretty mundane run of the mill kind of day. We did the dreaded drug count in the morning and phoned through the results to the supplier who got all confused because I was ringing in a day early. I explained that I was going to the hospital tomorrow and would not be in for their call. This seemed to confuse the girl even more who thought I was going in to hospital and wouldn't need my drugs anymore. I explained that it was only for a check up and I would be needing my delivery as usual. I wish I'd never said anything now because I'm going to be worrying for two weeks that my delivery won't turn up at all.

Kodak have filed for bankruptcy protection, what a shame. Kodak was a big part of my life for quite some years. I met Peter at college where he was studying photography and I was doing my A levels and I soon became embroiled in the photographic world. I spent many a happy afternoon tramping around Aberystwyth with a camera slung round my neck or up to my elbows in chemicals in the dark room developing my efforts. My perfume in those days was 'Odeurs de Fixative'. We didn't have much money for film so we were constantly sorting through the baskets of out of date film that chemists had on sale for half price and all of it was Kodak. Even now in the camera bag where I keep my old SLR camera I still have a couple of bright yellow boxes of Kodak film. It will be so sad to see Kodak go to the wall but unfortunately they were in trouble the minute digital photography became affordable to the man in the street, they just stuck their heads in the sand and hoped the problem would go away, much to their cost.

Off to the Brompton tomorrow so probably no blog as we are usually back late. I will tell you all about it on Saturday.

Decisions, Decisions

I am so pleased and excited. Andrew got an invitation for an interview at Herts Uni yesterday. We know it is only an interview and his place isn't yet confirmed but it is a step in the right direction. I am so pleased for him and the news has really lifted his spirits and given him the momentum he needed for his first round of exams which start tomorrow. Thankfully, despite his wanting to chuck it all in last week he has kept revising and as he is getting B's in his mocks I don't have any real worries. He is at home today and has had is head in his books since nine this morning, if he fails at least it won't be from lack of trying.

Four days off, though they promise to be busy ones. I have a trip to the Brompton on Friday which I'm not really looking forward too. They want to increase my meds again but I am extremely reluctant as I've only been nausea free for about a month after the last increase. I am particularly anxious because I have a day of assessment at Harefield and don't want to be so sick I can't go. You might think I'm being over anxious but when I tell you that each time they have increased my meds so far I've ended up vomiting for weeks afterwards, sometime so badly I can't even leave the bathroom, then you will see where I'm coming from. I know it sounds silly but at the moment the trip to Harefield is so much more important to me than the possible benefits of a small med increase. At the moment I'm feeling quite well, I'm able to eat and am actually putting on a bit of weight, I don't want to rock the boat. I'm hoping the Brompton will understand and agree to delay the increase, even if it is only for a week or so otherwise I'm going to have to get tough and just flatly refuse, and I really don't want to have to do that because I get on so well with everyone there.

When I return to work next week my hours are being increased from seven to eight, almost back to normal. It has taken me so long and I thought I'd never get there but here I am all ready to give it a go and see how I get on. I expect to feel tired, I was dead on my feet when I first went back up to seven hours a day so I expect no less from going up to eight. Luckily I have very sympathetic employers who allow me to take extra rest breaks if it is all getting too much. Now if I can just avoid another chest infection I reckon I'll be well on the way to returning to how I was this time last year before my body decided to throw a spanner in the works.

The news is still full of the capsized cruise liner and the phone call that has come to light between the ship's captain and one of the people in charge of the rescue. What a shocking dereliction of duty, I hope the captain is never put in charge of another ship because I certainly would not be happy sailing with him. Eleven people have now been confirmed dead while a further twenty eight are still missing. With time passing the likelihood of anyone still being found alive is remote. Would this have changed if the captain had stayed on board until all the passengers had been taken off? I doubt it but it would have made the families of the dead and the missing feel better knowing that their loved ones hadn't been abandoned by the man responsible for their safety.

Today was housework day. I had hoped that the weather would be nice enough to go out and take a few photos but it rained for most of the day. So I did all the household chores in the hope that if we do get a nice day during my remaining three days off I'll have time to go out and enjoy myself. How much do you want to bet that the only nice day will be Friday, when I'm at the hospital?

Every Cloud....

Was it a full moon this weekend? I have to ask as there have been some weird and wonderful calls, most of which had nothing to do with us at all.

Apart from the public my colleagues have also been less than happy these last few days. Everyone is desperately trying to book leave but are having it turned down left, right and center. It was the main topic of conversation on a slow Sunday and I suspect it will be a theme we will be returning to many times in the next few months or weeks as shortness of staff make leave an ongoing problem. Part of the problem is that a lot of my colleagues have school aged children and so naturally want to take leave during school holidays. Thankfully this is no longer a consideration for me which is probably why I seem to have more success at booking leave than some. The moral in the room is low and I can't see it getting any better until the leave situation is resolved.

It was so cold this morning, -5C when I set off for work. My breath kept misting up the windscreen of the car which made things a bit tricky. The drive in wasn't very pleasant this morning, lots of traffic, which is unusual for seven in the morning, and most of them doing stupid things. I got really irritated by one driver who crawled along in the national limit areas then took off in the thirties. The drive home though was glorious, the roads were quiet and it was warm and sunny. All that is set to change though and we can expect it to be wet, windy and warm mid week before snow arrives for the weekend. Lovely!

Last day of the set tomorrow then four glorious days off. It will also be the last day for one of my friends who is off to bigger and better things. Jade and I joined together, trained together and have worked together for over two years. I will be sad to see her go but happy that she is moving on to something she really wants to do. I wish her well and hope she has success.

On the PHA website there is a plea for help from a mum who's young daughter is refusing to have a Hickman line inserted. I can understand her daughter's horror, I nearly did a runner when having mine put in and I'm quite a few years older. At thirteen appearance and not being different is your whole world. While the daughter worries about how it will look the mum is frantic over how to persuade her daughter to take the plunge. My only advice would be that it is a huge commitment and you have to 100% sure that this is the route you want to take. It is not a treatment you can take shortcuts with, if you do the risk of infection is high. It is certainly not something anyone should be forced into. On the plus side despite it being an absolute pain it has made a big difference to how I feel. I can do so much more than I could six months ago and although I am still prone to chest infections my PH is very stable at the moment and my heart function is almost back to normal. Thirteen is a horrible age to have to be thinking of things like this and it is so wrong that they are having to do so. I'm sure once they have weighed up the pros and cons they will make the right choice for them, I wish them well.

The news is still full of the cruise ship that sunk off Tuscany. They are still finding people alive on the ship so fears of mass deaths seem to be unfounded, at the last count it was six dead and sixteen still missing. The ship's captain has been arrested and investigations have begun into how such a modern ship could have gone over so quickly. On the plus side, it seems the cost of cruises are plummeting. Every cloud........

Also in the news it seems Laila Morse has been voted off Dancing On Ice. I forgot it was on so didn't watch it and now that Laila has gone there is no reason too. Never mind Masterchef is back on Tuesday, time for me to get my pen and paper out and try and write down a few likely looking recipe ideas. Again every cloud etc, etc.

That Sinking Feeling

A report has just been published that says that eating just two rashers of bacon a day can increase your chances of getting cancer. Ye Gods! Is there ANYTHING we CAN eat without worrying about it killing us? They have it in for sausages too so if you enjoy a good old fashioned fry up from time to time your number is up. Personally I don't pay any attention to all this scare mongering and believe in everything in moderation and you can't go far wrong. So I will continue to enjoy my bacon and sausages and anything else that takes my fancy for that matter.

Had a long discussion with Peter about what I'm going to do after I've had my transplant. He tentatively suggested that I might want to return to teaching. I must admit I've been so focused on having the transplant that I've given no thought to what happens after, well except dreaming of diving into my local swimming pool that is. It would be nice to resume my career but there are so many unknowns. For instance I don't know if I would be able to go back into the classroom purely because of the infection risk. Schools are notorious hotbeds of infection and as transplant patients are advised against using public transport because of infection risk then I imagine teaching might not be an option. It is another question to add to the list I'm building up for when I see the transplant team at the end of the month. The discussion has got me thinking though. At the moment I'm perfectly happy with the work I do, it is interesting, rewarding, gives me a sense of purpose and allows me to use my brain. However if I were really well and capable of more physical activity would I still be content to sit in front of a computer all day? I suppose that is something I will find out if I'm lucky enough to get new lungs.In the meantime it doesn't hurt to keep my options open so I might look into it to see what refresher courses I'd need.

Had an absolutely awful day at work. I just seemed to be out of step and couldn't get my act together at all. I was so glad when it was time to leave. There was no particular reason for it, the phone calls were the usual mix of sensible and insane, there were no long lulls or periods of frantic activity and everyone else seemed OK as far as I could tell. I guess I'll just have to chalk it up as 'one of those days' and hope thing go better tomorrow.

The trip into work was a delight, the sun was just rising and I drove past fields white with frost on empty roads. I didn't see any wildlife unfortunately but anything with any sense would still be tucked up nice and warm somewhere in this weather. The drive home was equally nice with a lovely sunset developing. I turned on Ozzie at full blast and sang myself back into a good humour. I hope tomorrow is better.

The big news of the day is the sinking of the cruise ship Costa Concordia off the Tuscan coast. At the moment only five people are confirmed dead and fifty are missing, which is quite astonishing considering it was carrying four thousand passengers and crew. Looking at the pictures you have to wonder how a modern vessel slipped onto it's side so quickly. I thought modern ships were supposed to have all sort of  stuff to keep it upright in the event of a collision, maybe I was wrong. Peter and I had been discussing the possibility of taking a cruise recently but looking at the pictures I must say I'm not that keen. I know this is a rare event but seeing such a huge ship on it's side does tend to put you off. Thankfully this incident has narrowly missed being a fully fledged disaster and the majority of the passengers are now safe and well onshore and will soon be back home. For those that are still missing I really hope they will also be returned to their families safe and well but as time moves forward it is sadly looking less likely.

A late start tomorrow, I'm doing the eleven to six shift, which will be a change and ensures I get a lie in. Hopefully I will feel more like myself and it will be an easier day all round.

Time On My Hands

Woke up to a beautiful, bright, crisp frosty morning. I love frosty days, everything feels so clean.

Yesterday was a different story, it was warm, dull and dank and then it started to rain. We were supposed to be going out to Costco but decided to put it off for a day as no one likes to be loading stuff into the car boot in the wet. Instead I had another small cleaning frenzy and then got the ironing out. Since Laurence left my ironing pile has halved and I whizzed through it all in less than an hour. Ironing done and I look around for something else to do, I don't feel like reading or watching TV and suddenly have to admit I'm bored. I can't remember the last time I felt bored, I'm so used to being too tired or too ill to do anything that boredom rarely had a look in. I think about getting my camera out but the lack of light and colour in the garden would mean very dull photographs, besides which the rain had sent the wildlife scurrying for cover so it was dead out there. So it was back to the cleaning and now I have the most hygienic kitchen and bathroom in the whole street. Hurry up nice weather, I want to get out and about again.

Today is more promising but I won't be going out with my camera as we have too much to do. I have to go to Costco to pick up my contact lenses or I won't be able to see tomorrow and Peter has to collect some shelving he won on ebay.

This morning I set myself the rather ambitious task of trying to cook a sweet and sour chicken from scratch. I've become a bit of a dab hand at curries so wanted to extend my skills by trying something different. It's not as easy as it looks and I ended up with something resembling marmalade. We still had sweet and sour for lunch though, only it came out of a jar and was made by Uncle Ben.

Costco was quiet and we were in and out in no time which is just the way I like it. However for a brief minute I did wish we had gone yesterday, the wind cutting through the car park was freezing. After a brief home stop to off load it was on to Luton to pick up the shelving. Everything looked fine until we got it home and then it turned out to be a shade lighter than the shelving we already have. Peter is now muttering about 'staining', I don't think he's exactly thrilled.

We arrived home to the wonderful smell of hot cake. Andrew had decided to bake some chocolate muffins while we were out. They look impressive but I'm a bit worried by his statement that he 'changed the recipe to make them more puffy.' I think he's added extra baking powder, I just hope he hasn't added too much and they still taste nice, too much baking powder can make things terribly bitter. Still I mustn't complain, it is not every teenage son who comes home and bakes his mother a treat.

Tonight is the funeral of my favourite all time soap character. I have got some chocolate at the ready but no tissues, I don't cry at fictional funerals. I will however mourn the passing of a great character, Eastenders will never be the same without Pat Beale/Wickes/Butcher/Evans and to be honest I'm no longer counting myself as a great fan. Like most things in life it has moved on and developed, as it should, but it is now so far removed from the original that it could be an entirely different show. I will still watch but won't stress out if I miss an episode or two from time to time.

Early to bed tonight as I'm at work again this weekend and am due in at 8am. The forecast is ice and fog, nice. I always enjoy starting the day scraping my windows just to watch them freeze up as fast as I can clear them. 

Calm Again!

The storm has passed. Andrew returned from school yesterday afternoon and was much happier. We had a bit of a chat and cleared the air. Phew! So glad! He has got back to the company and told them that he wants to complete his A levels but if they have anything going in the summer to keep him in mind. A sensible compromise that doesn't close off any other options he might have. I don't know what made him come around, maybe he just needed time to think, I don't know and don't really care as long as we are OK. I think we will both handle things differently next time, hopefully there won't be a next time.

Had the results of my warfarin test back and am delighted to say they don't want to see me again until March, that's eight weeks. I've never had such a long gap between tests before and I'm delighted that I've become so stable. Of course it means not seeing my old ladies for all that time, which I will miss, but if it's a choice between seeing them and having a needle stuck in my arm, well you know which one I'm going to choose.

Today I took a step back from the frenetic activity of yesterday. I spent time catching up on paperwork and I actually ordered my car tax disk early for once. I went out for a potter around the garden, checking everything was still OK following last week's gales and then replaced the fat balls and refilled the bird feeders. Although I have two cats they are rather elderly gentlemen and prefer to spend their days stretched out on the furniture as opposed to catching things. The birds in my garden are relatively safe and I get a great deal of pleasure watching them from the dining room on cold frosty days. I keep meaning to set up a camera and a long lens to try and catch some of the action, I really must get on and do it. When I first went out into the garden there was silence, then I hung up a feeder and heard a chirrup somewhere behind me, by the time I went back inside the noise was amazing. How do they know? Do they have look outs in all the gardens? Obviously the grapevine is in full working order as my garden is now full of visitors whereas before there were none.

Andrew is off on a two hour driving lesson after school today. He is really enjoying them and seems to be doing quite well. His test has been booked for 28th February and he and his instructor are both pretty confident he'll be ready. Me and my bank account hope this is the case.

There is a government more stupid than the English one. Step forward the Welsh, who are not only prepared to pay to have breast implants removed but will cover the cost of replacement too. I am lost for words on this one.

The new high speed rail link between London and Birmingham has been approved much to the dismay of pretty much everyone who pays taxes. The environmental protesters who are generally better organised and prepared for these events than the government are already swinging into action and who can blame them. Wouldn't the money be better used getting the railway we already have working properly? There isn't one commuter who wouldn't like to see a few more carriages at rush hour so he at least has a shot of getting the seat he's paid thousands for. The project is due to be completed in 2026 but we all know that is not going to happen. There are going to be years of enquiries, consultations and judicial reviews before they even start and if someone can find a Great Crested Newt somewhere along the route that will be that. If they are lucky they might be able to start the build in 2026 by which time they may not be able to even afford it. If it does get built who on earth is going to use it? Certainly not the ordinary traveler that's for sure as I suspect ticket prices will run into the hundreds. It won't take long for the public to realise it is actually cheaper by road, and more convenient, and we will be left with yet another white elephant.

Tomorrow it is the joys of Costco and the ironing, I do lead such an exciting life.

Oh No, I've Said Too Much

An early night followed by a lie in and I'm feeling so much better already. Had a long bath bomb soak and the transformation from knackered zombie to bouncy human being is almost complete, I say almost because I don't bounce anymore, well not physically but inside I'm jumping around like a two year old. I felt so good that by ten I'd loaded the dishwasher, done my white wash and mopped all the hard flooring. Then it was a quick change and off to the Lethal and Deadly for my warfarin test.

As from Jan 1st the clinics have swapped from afternoons to mornings and we all have been allocated an hour slot in which to turn up, mine is between ten and eleven on Tuesdays. I had two worries, one would be that I'd been given a different time slot from my old ladies and that being the morning, parking would be even more difficult. As it turned out my fears about parking were spot on and I had to walk into the hospital leaving Peter to find a parking space in a side street as on site parking was manic. Fortunately my old ladies were still with me though I sensed an atmosphere. Grace was not amongst them this morning, I do hope she hasn't been changed, but most of the others were and I feel there has been some sort of falling out. They were all sitting as far away from each other as possible and shooting malevolent looks across the gaps. One kept banging the floor with her walking stick as though she wanted to hit someone. I decided to sit away from them and watch and try and figure out what was going on. Unfortunately my time of observation was cut short as besides me and the gang there were only five people waiting so I hardly had time to open my book when my name was called and I was done. I wonder what that was all about. Maybe Grace is the one that keeps them all together and when she isn't around they revert to hating each other. I rather hope my next appointment is sooner rather than later now so I can see what happens next.

Next stop was Tesco's and to counter the over indulgence and masses of chocolate, cheese and pastry we've consumed the last three weeks I headed straight to the fruit and veg and stocked up on loads of healthy stuff. I have a bit of a dilemma, the stuffing has had a positive effect and I've finally put a bit of weight back on, five pounds to be exact, the most I've put on in almost six months. So now I've got to work out how to return to my normal diet without losing the weight I've gained and while trying to put on more. I guess I'm just going to have to sprinkle some chocolate bars amongst the apple and tangerines and hope for the best. At a time when everyone is desperately trying to lose weight I feel quite guilty about being thrilled at putting it on. People do not tend to see weight loss as a bad thing but it can cause as many problems as being over weight, especially when you are trying to get into the best condition you can before a major op like transplant. To much weight and it makes the op difficult for the team working on you, too little weight and you haven't got enough reserves to fall back on for recovery. Hopefully my reserves are now building up again and I'm giving myself the best chance I can.

This afternoon it has been feet up with a nice cuppa and a DVD. I maybe feeling better but I know when to slow down and this was one of those times. I dozed for a time and then read the paper before Andrew came home in his newly formed cloud of gloom.

We had an blazing row last night, it was my fault I really shouldn't have flown off the handle but when I explain you'll see why.

Andrew has started to panic about his A levels, he's been turned down for two of the four courses he applied for and has become despondent. He has started to believe he will not get into university now and has gone rushing off to find something else. He found this website offering an apprenticeship in a laboratory in Northampton, which was fine except they expected him to start at the end of the month right in the middle of his first round of exams. He jumped at the offer and was ready to give up all he'd worked so hard for these last two years. I saw red, he's always said that he'd hate working in some routine, dead end job and yet here he was rushing head long into one. I could instantly see him regretting his choice in a very short time and a future of having to do things the hard way if he ever wanted other qualifications. So for the first time in years I screamed at him and told him it just wasn't going to happen, he screamed back saying he was an adult and could do what he wanted. He's right of course, which made me even angrier. To cut a long story short we ended up the day not speaking and are still not speaking. I just want to sit down with him and explain that he could go so much further if he got his A levels, and that he could still get a university place through clearing, and that he still could get an offer but he's not willing to listen to anything I have to say at the moment. It breaks my heart as we are normally really close and we've never badly fallen out before. I'm just hoping that when he calms down he'll see that I meant well even if I went about it in totally the wrong way.

If you have kids then sometimes you just can't do right for doing wrong. I hope we can return to our old relationships but I fear this might take some time to repair.

Ice, Ice, Baby

OMG! I didn't know it was possible to be so tired and yet still be awake. This is my second week at my new increased hours and I'm beginning to struggle. I'm going to have to take this a lot slower than I imagined I would but I'll get there eventually. It is so frustrating and sometimes I hate the limitations this stupid condition imposes on me. I still cannot get my mind to accept that I'm ill and try to carry on just like everyone else and then my body goes and lets me down because I've pushed it too hard, again. Part of the problem is that I'm beginning to feel pressure from work. They try desperately hard to give me space and let me go at my own pace but I'm not blind, deaf or stupid. I know that we are so short staffed that we are working on the edge at the moment. We are so stretched that if any one of us goes sick we are in trouble. I know that I'm adding to the strain by only working part time so I'm really feeling the urgency to get back to my full time hours. I try to reason with myself that they would probably much prefer me to be there part of the time than over do it and not be there at all but the pressure is still there. I'm going to have to try and strike a balance between being honest with myself while doing the best I can at work, it's going to be tough.

What the hell have they done to Dancing On Ice? I was so disappointed with last night's show that I really don't know if I will be bothered to watch the rest of the series. First the presenters; who on earth thought it would be a good idea to drop lovely, soft, curvy Holly Willoughby and replace her with hard, angular, screechy Christine Blakeley? For the majority of the time she stared out of my TV screen like some crazed goblin, scary and unpleasant. Then we have the judges, say what you will about Jason Gardner but he did make the show interesting. OK, I agree, last year he took it far too far but the show is poorer without him. The three judges they have now seem incapable of saying anything other than comforting platitudes and were dull, dull, dull. And as for the contestants, well I can honestly say that I can count the ones I've heard of on the fingers of one hand and, with the possible exception of Laila Morse, am not interested in any of them. So all in all a wash out from my perspective, and I've heard several people complaining about the changes too. Why is it that as soon as they have a nice comfy, dependable, reliable format they get this manic urge to fiddle and ruin it all.

In the news we have a celebrity chef caught stealing cheap cheese and wine from Tesco's. He has apologised and says he will be getting 'treatment'. Treatment! So shop lifting is an illness now is it? Give me strength.

The NHS has said it will replace faulty implants for those women whose private clinic refuse to do so. Excellent, so having heard all that naturally the private clinics are going to refuse amd so save themselves the cost. The NHS have put in some qualifiers though in an effort to stop themselves being swamped, women will have to have a genuine reason for wanting to have the bags removed. Guess what one of the qualifiers is? Being anxious. If a woman rocks up to the NHS and claims to be anxious about her implants then the NHS will whip them out no other questions asked. And the cost to the NHS, an estimated £150 million pounds. Just think what the NHS could do with that money to help those ill through no fault of their own.

Off to warfarin clinic tomorrow to catch up with my elderly ladies and get an new bruise. Joy!

'Cause When You're A Celebrity It's Adios Reality

They are still debating whether the stupid, vain women who stuffed bags of plastic into their bodies should get them removed on the NHS. NO! NO! NO! I am so angry about this, it shouldn't even be under discussion.

Back at work and I must say the day went rather well all in all. I felt much more livelier coming home than I did last week but I must remember this is only day one out of four. Had to do some training, so bored, talk about teaching your grandmother to suck eggs. For goodness sake! I have a degree, I taught IT for over ten years and can find my way around a computer screen thank you very much. What a pointless waste of time, next time just give me the manual and an hour to go through it, job done.

It was an early start to the day and I was on the road just after seven this morning but didn't get to see any wildlife this time around. Tomorrow and Sunday I'm on lates so will have to battle my way through traffic and travel home in the dark, something I really hate doing. Having said all that I quite enjoy flexible hours, as they say variety is the spice of life, it's just not so good when it is cold, wet and dark.

Watched the start of Celebrity Big Brother last night in the vain hope they might have someone interesting on. It seems drug crazed sex pest rejects from X Factor are now classed as 'celebrities', well that's me turning off for the duration. Out of all the people they could have chosen from X Factor why him? Out of all the contestants he was the most trouble, ohps, I appear to have answered my own question. Seems all you need to be a celeb these days is an attitude; skill, talent and decency just don't cut it anymore, sad times.

My drug delivery arrived and as usual what arrived is nothing remotely like the order I put in. Typically the things I am really short of have been replaced with the bare minimum. I have enough for the month but no spares to cover faulty items or those accidentally contaminated, if I drop them for example. The things I categorically said I did not need more of have arrived in vast quantities. Why can't they get it right? Is it really so hard? I must admit I did have reservations about placing an order the Friday before Christmas but I had little choice. Obviously 'Emma' was either suffering from too much Christmas cheer or just didn't bother listening to me. Another complaint will be heading their way. I'm hoping that if I complain enough they will eventually take notice, OK it is a long shot but it can't go on like this, it is really beginning to stress me out. At least they didn't actually forget anything this time, so I suppose there has been a small improvement.

 The killers of Stephen Lawrence could have their sentences increased to twenty years, now that's more like it.

In the news it appears Mount Etna has erupted again. I love watching volcanoes in action. There is something very beautiful about them. Fortunately this appears to be quite a small eruption and no one is expecting any disruption to travel so everyone can sit back and enjoy the spectacle without having to worry about disaster planning. Of course the global warming devotees and other weirdos are taking the eruption as a sign. For the climate change lot it is a sign that global warming is getting out of hand. I'm sorry but volcanoes have been erupting on this earth long before man appeared and will continue to do so long after the human race ends. Volcanoes are also one of the biggest causes of so called 'greenhouse gases' on the planet, well apart from cows, but nobody talks about getting rid of them do they? It has been calculated that the mass of particulates alone ejected, during the St Helen's eruption, in just one hour had approximately five times the mass of all the oil that man has ever been pumped from the ground. So maybe the cars are not just to blame. As for the weirdos well apparently the Celts have taken the more frequent eruptions as a sign that the world is rushing towards ending in 2013. Celts, that includes the Welsh, of which I am one. Makes me ashamed to admit it at times. However the Mayans might still get in first as according to them the earth will end in December 2012. You just couldn't make it up.

Suicide Is Painless

A new year and a new look for my blog. Hope everyone likes the change.

My goodness what a night. At one point I thought the roof was going to come off but thankfully we escaped unscathed from one of the stormiest nights I remember in years. I didn't get much sleep though so am really tired today. A quick tour of the garden showed it had also escaped intact, the fences are still up and holding firm and the garden furniture is still in place including the covers. In fact the only damage appears to be to the silver birch which has lost a couple of smaller branches from near the very top. Looking at the pictures on the news I think we were very lucky.

Went out to Costco this afternoon and was pleasantly surprised to find it practically empty. We zoomed around in double quick time only stopping to enjoy a free sample of the most delicious chicken korma. I love shopping when it is empty, you can really take your time and browse. They had a huge display of jars of nuts, no doubt unsold from Christmas and I would have been tempted if it were not for the price. I'd rather buy them loose and shell them myself than pay what they were asking for them. We were rather amused when we got to the tills to see a man in front of us with a trolley stacked high with baked beans. He must have all but cleared them out. We concluded that he must run a cafe and his menu is mostly bean based.

In the news the powers that be are debating whether it would be ethical to allow a terminally ill person to have medical assistance to end their own life. As someone who is terminally ill I must say it is about time this subject was discussed in this country. The British tend to treat their animals better than they do human beings. A dog or cat with cancer and in terrible pain will be put down out of kindness because that is what is best for the animal. However a human in the same situation has to suffer and die slowly and painfully because the first rule of medicine is to preserve life come what may.  I genuinely believe that there is a point where the fight to safe a life crosses the boundary between care and cruelty and medics should recognise this change and stop trying to preserve something that is beyond long term preservation.  Let me say right now that I don't think I could ever end my life, this is because I'm a natural optimist who always believes tomorrow will be better. I'm also fortunate that my illness isn't a particularly painful one, it is not without pain but it is nothing like the pain suffered by those with cancer. If I were in constant pain and I knew it was only going to get worse then maybe I would consider it, who knows.

This debate is going to stir up some pretty strong views on both sides of the fence and I can see it raging for months or maybe even years before a decision is made. Ultimately I think that decision will be to reject the idea because the argument will be that despite any safeguards put into protect the patient from malicious relatives, someone will get around the system and suddenly we'll have a murder on our hands. The only way to do it would be to have a system so regulated that only a very, very few will ever qualify for the scheme. The other problem with extensive safeguarding is that it could take so long for the decision to be made that the patient is no longer able to carry out the act themselves or, in the worst cases, have died while waiting. So far the safeguards proposed are as follows:-
Two doctors will have to agree independently on the course of action
The patient would have to have less than a year to live.
The patient would have to be of sound mind.
The patient must be capable of administering the medication themselves.
The patient must be over eighteen.
The patient is not under any 'undue influence'.
All these safeguards seem sensible but in practice either go too far or not far enough depending on your point of view. And how is anyone ever going to be able to prove that they are not being 'unduly influenced'? It is going to be interesting seeing how this all pans out.

Also in the news the Stephen Lawrence case rumbles on with some interesting new developments. Within hours of Dobson and Norris being sentenced new evidence had been passed to the police regarding the involvement of others yet despite this and the judge urging the police to find the other culprits the investigating team is being disbanded, how odd, and how insensitive. Surely they have duty to at least look at the new evidence? In the meantime following a complain from a member of the public the attorney general is now looking at the sentences handed down with a view to possibly increasing them. It must have been some complaint.

Back to work tomorrow, I'm on weekend shifts until the end of the month. I don't actually mind working weekends as it means I get to go shopping during the week when the shops are quieter. It also means I don't usually have to take time off to attend my medical appointments as they fall on my days off. A win, win situation.

Drug delivery day tomorrow, can't wait to see what they've left out this time.

Justice?

I missed my warfarin clinic. I got confused about the day and convinced myself that yesterday was Monday. I got a mild rebuke in the post this morning and a new appointment for next Tuesday which I have written on my calender so it will be another week before I find out how my old ladies faired over the holidays.

Having said all that I might well have thought twice about going even if I had remembered as the weather was terrible. High winds and torrential rain did not make for a good combination. As the car park is quite a way from the clinic and like most PHers I have trouble breathing in windy weather, getting there in one piece was not going to be easy. I wouldn't be able to run to get out of the rain so would have got soaked. I am not physically very strong so could easily be blown over which on warfain would have meant a trip to casualty to check for internal bleeding. And finally the wind would have literally taken my breath away. These are things I'd never imagined when first diagnosed. You never realise how much being ill effects day to day living unless you are there. One of my guilty pleasures when I was younger was taking a walk along the prom in stormy weather and dodging the waves crashing over the railings. Wouldn't be able to do it now, it would be far to dangerous, another part of my life wrecked.

Still maybe not forever and maybe not for that long. I have an appointment at Harefield on the 27th Jan to meet the transplant team for a review of my case and for a full day of testing to see how bad my lungs are now. Well obviously they have not got any better because I'm attached to a machine. My heart however is fit and strong and that was a major concern when I was first referred. I am very hopeful of a positive outcome to the meeting and that my place on the transplant list is secured.

Well the last two days has been a busy time for news.

The breast implant panic rumbles on and now the suggestion has been made that the implants be removed on the NHS. Excuse me! No! I have no problem with those women unfortunate enough to need re-constructive surgery having the implants replaced on the NHS as their needs are genuine. And of course the NHS chose which implant to use so they should be responsible. If however you have had them put in to boost 'confidence' or for pure vanity then you chose them, they are your responsibility, you pay to have them removed. I deeply resent an already cash strapped NHS having to foot the bill for these silly women when cancer patients are having drugs refused because of cost. It's all about priorities and vanity shouldn't even register on the list.

The second big piece of news is the conviction of David Norris and Gary Dobson for the murder of Stephen Lawrence.I don't really have a lot to say on this as I, like most British people, have talked about this case on and off for the past eighteen years. I am pleased for the Lawrence's who ultimately lost more than just a son. I'd be even more pleased if all five had been convicted but beggars can't be choosers. Apparently the only hope of getting the other three to court is if one of the two convicted speaks about their involvement. If they haven't said anything in the last eighteen years it is unlikely they will say anything now so I think that might be a lost cause. Partial justice is better than no justice but only full justice will give the Lawrence's peace and bring the whole horrible business to an end. The sentence came in late this morning and each will be in prison for the minimum of fourteen years.

Andrew went back to school today, for one lesson. Yes Wednesday is his lightest day so he won't be gone long. He seems pleased to be back though, I think he was getting bored just revising all day. I suspect he'll be showing off his new notebook to his mates and catching up on all the gossip.

Went out to Tesco's this afternoon and was depressed at how grey the world seems. I dislike the hiatus between Christmas and spring. January and February are desolate months that seem to have had every shred of colour washed out of them. Role on March and hopefully a long hot and colourful summer.

Down To Earth With A Bump

Well it's been a good New Year. Laurence arrived in time for tea on New Year's eve and later went out to catch up with some friends he hasn't seen since he moved. He rolled in at two in the morning then slept late. It was as if he'd never left. New Year's day lunch was very special, beef with all the trimmings, wine and a good old catch up. We sat down at twelve thirty and didn't finish until two. Then we exchanged presents, enjoyed a coffee or two and then it was time for Laurence to leave. I wish he could have stayed longer but he had to be up early for work today and had some stuff to do beforehand.

Andrew also went out on New Year's even but didn't stay very long as he had to be up early on New Year's day for his paper round. He didn't really mind though as he'd already been out the night before and had a really good time. He hasn't revised for the last two days, which I think is a good thing as everyone needs a break but will be back on the books this afternoon. He is back at school on Wednesday and cannot believe how quickly the break has gone. I must admit I can't quite believe it either. I think the fact that I work up to Christmas day and then between Christmas and the New Year has made it a little less special for me this year, still enjoyed it though.

Changed my dressing today, I now change it every third day unless it gets wet, and was slightly alarmed to find I'd been bleeding. This hasn't happened for a long time and I'm at a loss as to why this has started again now. I don't remember pulling it but even if I did the way I loop the line is designed to stop any accidental pulls affecting the line site. It might be just one of those things or it could be heralding the start of an infection. I cleaned it thoroughly and carefully and am now hoping for the best. I won't disturb it again tomorrow but will check it on Wednesday and if it is looking suspicious I'll be off to my GP, again. I've had trouble with the line site from the beginning. It took a long time for it to heal and has continued to look angry around the site, though numerous swabs have not shown any infection. My specialist team thinks it is just my body trying to get rid of the line, similar to rejection in transplants and will settle down eventually. They also said it showed that my immune system was working really well. Excuse me? If my immune system was working that well I wouldn't be getting all these bloody chest infections would I.

There were no big natural disasters this year, thank goodness though both Japan and New Zealand had minor earthquakes, most likely after shocks from the more serious events in early 2011. However there have been an alarming amount of killings during the festive season. One news source counted eleven since Christmas eve and today I wake up to hear of another four people have died in a shooting believed to have taken place on New Year's eve. It seems the season of goodwill to all men no longer exists. What a sad reflection on what Britain has become. We are getting more like America every day and not even the good part of America. No, we've by passed the work ethic they have and gone straight for the gangster culture. Sometimes I think if I were fit and had the money I'd just leave. The trouble is where would I go, the rest of the world seems to be just as bad these days.

Today is housework day, I have piles of washing and ironing to do. Tomorrow it is off to the warfain clinic where I firmly hope they will give me another six weeks grace before my next test. Then in two weeks I'm off to the Brompton to have my tests repeated, just to make sure the good results I got before Christmas wasn't a blip and then in three weeks its the long awaited trip to Harefield for my transplant review. It is going to be a busy start to 2012.