Hope for a Cure

Yesterday was very quiet, well for me anyway. I spent most of it dozing in front of the TV. The boys however had a much more interesting afternoon bike hunting and Andrew has ended up with three possibles. Another Honda, a Suzuki and a Yamaha, please don't ask me which models, I'm afraid that sort of thing goes in one ear and straight out the other.

His balloon has been slightly deflated this morning however as trying to get insurance is proving a bit of a trial. Of course a bigger, newer bike was always going to be a bit more expensive than his current model but some insurers are asking for an extra £1000, which is totally ridiculous, especially when I can insure the two litre 156 for him for just over £900.

Of course I have tired to tell him that at least he does have transport and he acknowledges this, but he'd just like something a bit more comfortable for the long journeys he does. I suspect it is going to be rather tense in the Roberts household over the next few days.

So with that in mind it is just as well that I'm feeling a bit perkier this morning I slept really well and that overwhelming fatigue I've been experiencing for the last few days seems to have lifted. My cold has retreated to a slight sniffle and scratchy throat and the 'full' feeling has also reduced. I've spoken to my doctor and as things seem to have settled, and in view of my cold, they will try and bring my clinic appointment forward rather than get me in as an emergency. I'm happy with that and have promised to phone them straight away if it happens again. They agree that it could just have been extreme stress or I might have been having these small irregularities for some time and it only felt really bad because it coincided with a hot flush. I can go back to work as long as I pace myself but if I'm not feeling up to it I'm to stay at home. As it's the anniversary of my diagnoses I'm due the full MOT anyway so if there is anything wrong they will find it. And as my original appointment is only three weeks away it is not too long a wait.

I was amazed and delighted to read today that a cure for PH might not be as far away as we all thought.

Stanford University School of Medicine are pretty sure they have isolated the cause of PH. And as we all known once a cause has been found a cure can be worked on. 'Pulmonary hypertension, a deadly form of high blood pressure that develops in the lungs, may be caused by an inflammation-producing molecular pathway that damages the inner lining of blood vessels and blocking that molecular pathway has reversed PH in rats'. This is really, really good news. Of course there is a long way to go before this can even be tested on humans and for me the cure, if successful, will be too late, but I can't tell you how pleased I am that soon this terrible condition might never again cause so much pain and anguish. Yes I know we are very, very lucky that we are able to effect a cure already through transplantation BUT transplantation is really swapping one condition for another and can cause even more health problems. To get the body to heal itself will always be the safer option. I hope and pray this discovery leads to bigger and better things for all PH patients, and soon.

To read the full report follow this link. http://med.stanford.edu/ism/2013/august/nicolls.html

Today is going to be another spent resting up and with a bit of luck I will be back in fighting form by the end of the week. Of course now winter is approaching there are going to be even more colds, flu and other nasty bugs floating around. I've booked my flu jab for the first week of October, more of less on the first day of the first clinic, as I do not intend to have flu if I can possibly help it.

A lot of well meaning people think I should more or less hibernate during the winter months to protect myself. Now while this is an attractive proposition it would never work. First off for it to be effective my entire family would also have to cut themselves off from the world and that's not going to happen. Secondly I'd go mental! I'm not the sort of person to be able to sit around watching TV and doing nothing for long. So as dangerous as it is the risk will be worth it. Though I'm secretly hoping to have had my transplant by the times the bugs really get going and so will be stuck at home anyway.

Well Andrew is off on another bike quest this afternoon so is cooking an early lunch. I am going to be given sausages, mash and peas and 'I'd better eat it all'.

I have a feeling he's going to be a proper little tyrant when he looks after me post transplant.

Listening to Reason

I have listened to my telling off and am staying at home.

Well when I say I listened it was more a case of my body hijacking my brain as I slept soundly through my alarm and was finally woken at nine by the rain hammering on my window with the cat purring by my side wondering when he was going to get breakfast.

This excessive tiredness is worrying me a bit. For the last five or six days, come nine o'clock, I have difficulty staying awake and by ten I'm out like a light. I then sleep heavily through the night and wake up still tired. The last time I felt like this was when I was teaching and would come home and fall fast asleep at four in the afternoon. On the plus side my little machines have shown a definite improvement overnight. Although my ribs are still sore my oxygen sats have gone up to 91% and my heart is firmly back in a slow sinus rhythm, so whatever started this latest bought of feeling unwell has passed. I just hope it doesn't come back. However another problem has reared it's ugly head. I have woken up with a streaming cold. Terrific!

So it is another day on the settee. My men are being protective and refusing to let me even make my own tea. They say I look tired, now I always 'look' tired, it goes with the territory so for the men in the house to notice and comment on it means I must look like hell. In the mirror I can see the dark black circles under my eyes are now extending upward so with the pale skin I look a bit like a panda. There is clearly something amiss, I just don't know what. I know I don't have a chest infection, the GP has confirmed that so I'm hoping the tests at the Brompton, when I get a date and time, will clear things up. It could just be that I just need some time out to recharge the batteries.

Last night I did something that I wasn't expecting to do so soon. I dug out my slipper socks as my bare feet were freezing. I know I wanted a drop in temperature but I was rather hoping it would be another few weeks before I had to put on socks and jumpers and at least a month before we started using the central heating again. Andrew said that although cool it wasn't cold in his opinion so on reflection maybe I was running a bit of a temperature. I'm OK this morning so we'll see how it goes.

Andrew is currently driving me mad as he looks for a new bike. His current machine was only meant as a starter bike and, as he is now allowed to ride something more powerful he is anxious to upgrade. This of course is creating a whole raft of conflicting emotions for me.

When he first mentioned changing I gave him an option. I would pay for the insurance on the 156, yes we still haven't got rid of it because Peter hasn't finished tweaking it, for a year if he preferred to spend the winter in more comfortable transport. To give him his due he did think long and hard about it but finally rejected the idea. This year he will be doing even more placements in London. Having a bike means easier parking, being able to nip in and out of traffic jams and better fuel economy. Too be honest he won his argument. I know he is a safe rider, he's seen too many accidents not to be, but he is not the problem, it's other drivers. He's promised not to get anything too powerful, what he really wants is a more comfortable ride and something he can put panniers on so he can keep his equipment and spare uniform dry. And as he is twenty in less than three weeks, I will have to bite my tongue and let him get on with it. Whoever said children gave you less stress when they become adults was lying.

I spoke to Laurence on the phone yesterday. He is not giving me any stress at the moment and we had a lovely long chat culminating in a promise to get together on his next weekend off.

In the news Prince Andrew is furious that he was challenged when entering Buckingham Palace in broad daylight. OK the officers involved should have recognised him but is he really right to kick up such a stink about it? Personally, in his position I'd be delighted that my elderly parents were being so well guarded. I suspect his pride was hurt, hence all the fuss. Prince Andrew has never taken his own importance lightly.

Time for another cuppa and then a lie down, I've only just got up but I feel like I've pulled an all nighter. I just wish I knew why.

Strictly Fruity

I managed yesterday's trip to Tesco rather well, though I did have to use my trike rather than walk as I'd normally do. I came away with bananas, peaches, plumbs, melon, blueberries, cherries and strawberries. Most of which will be eaten as they come but the blueberries and bananas, plus a strawberry or two will be going into a smoothie later today. I also bought a couple of boxes of Complan and some soup. Yes the battle to stop loosing weight is back on. Also the Complan will give me a vitamin and mineral boost, something I think I'm in dire need of.

While whizzing around the shop I was stopped by a woman who was overcome with admiration for my trike. She wanted to know everything about it. Where I got it, how much it cost and how easy it was to use. I told her as much as I could in a crowded bread aisle and then gave her the website. The amount of trade I've sent Travel Scoot's way I should be claiming commission.

I was also stopped by two people who were very interested in my back and wanted to take pictures of it. I was wearing the Live! Give! t shirt, which has one of those fancy code things that takes you to the organ donor site if your phone has a bar code reader. Lets hope these two used the code to sign up and didn't just do it for curiosity. I think this t shirt is going to be worn in as many public places as possible, if I get two people interested each trip then it will all be worth while.

I fell asleep on the way home and was practically carried into the house and dumped on the settee while Peter and Andrew rushed around putting the shopping away. I was presented with a cuppa and left to doze until tea time.

With Strictly on at the time when I'm usually knee deep in bottles, needles and lines I decided to do something I very, very rarely do and alter the time I go through my line change and drug mixing. It's a bit naughty and I try not to do it but I have been told that I can be up to an hour early or late as long as I don't make a habit of it. Routine is the key to keeping things ticking over nicely.

Drugs done and armed with a can of ginger beer and a bag of cherries I was ready.

Strictly Watch

Yay! It's back and the introduction show produced a few surprises, one or two comic moments and a few disappointments too.

The disappointment was that Vincent and Flavia would not be taking part. I am genuinely upset about this as they were two of my favourites. However we did see the lovely Flavia when she and Lewis Smith performed their Charleston to show this year's contestants what's expected. Some of them looked very worried indeed.

The pairings are usually a bit hit and miss and so it was this year. We have five new dancers and as is usual most of them got paired off with the 'least likely to get past week five' contestants. The more established professionals got the cream of the crop with one or two notable exceptions.

Karen Hauer ended up with hairy bike David Myers much to the shock and amazement of fellow bike Si. His face showed a mixture of disbelief that Myers had landed such a beauty and wistful longing, maybe he was wishing he was also in the show.

Aliona got landed with Tony Jacklin but may be pleasantly surprised and Robin got Deborah Meaden, I don't think he's going to be surprised at all. The happiest man in the building must have been Anton, who for once has been give someone who probably won't win but will keep him in for a good few weeks. Fiona Fullerton.

However the best laugh came when the show's bad boy, James Jordan, was landed with this year's female turkey, Vanessa Feltz. He vainly tried to look delighted but his eyes were shouting 'help!'. I would not be at all surprised if poor Ola had to put up with a massive rant once they got home.

The male turkey comes in the portly form of Mark Benton who I suspect will be using the series as a slimming aid, that's if he gets further than the first show.

The group dance was a shambles, as always but it was instantly obvious that Myers has no rhythm or timing. Craig is going to have a field day with him.

Finally Bruce and Tess, well the least said about Tess's dress the better. Bruce however is causing a few concerns. I know I've said before it will not be the same without Brucie but to be frank, I don't think this year is going to be the same with Brucie. He seemed a bit flustered at times and there are reports that he was so bad that it took five hours to record last night's show. I bet they are really looking forward to the live shows if that was the case.

I can't predict a winner yet, give me a chance but first out could be Mark, Vanessa, Tony or Dave. Roll on the proper start on the 27th September.

Right time to scurry down and thrown something in a pot before the Grand Prix.

Strictly Excited

Well tonight is the night folks. I will be doing my meds slightly early so I can sit and watch an uninterrupted two hours of sheer bliss. Of course the real competition doesn't get going until the series starts properly on 27th but tonight will be a mouth watering teaser. Although the contestants have already been announced, who they are dancing with hasn't. Tonight they will be matched up with their professional partners, please don't give Vanessa to Anton, he deserves better, and will do a little group dance so we can start to get a measure of the talent or lack of it. Bruce will be there forgetting his lines and making unfunny jokes, Tess will be in some hideous creation that she can barely walk in and the Judges will over react to everything. You just can't beat it.

So before all the excitement how am I doing?

Well a bit of a mixed bag really. I feel OK sitting watching TV or at my desk typing away on my computer but anything more active than that reduces me to a wheezing, sweating, blue mess. My stomach is like a hard little football and I'm finding it hard to eat as I feel full after just a couple of mouthfuls. I've experienced this before and I am fearful of what they might say at the Brompton. I'm even more fearful that I'll end up being admitted but we'll see. Hopefully all I need is a couple of tweaks here and there and I'll be back on an even keel. It might be that I need to increase the diuretics on a more permanent basis, instead of just the week I did when I last had problems.

At the moment I'm not sure whether work will be an option on Monday. I have another day and a half to decided. In some ways I wish they'd managed to book my tests for the Monday to give me an extra day and allow me to have some reassurance first. Current thinking to to stay off and wait in for the phone call and go back after I've had the tests. See I can be sensible from time to time.

Yesterday I received the fabulous 'LIVE! GIVE! t shirt to raise awareness for organ donation. The deal is you get a 'free' t shirt and send them a picture of you wearing it that they can use in their campaign. Once they have the system up and running all t shirt recipients will be asked to make a donation. Here is the picture I sent. Yes I know it is dreadful but I was feeling terrible and it took all my strength just to stand long enough. I know, I know, I could have sat in my wheelchair or on my trike but I don't like being seen like that. The motorbike is Andrew's.

Just hurry up and take the damned picture!

Later on Peter had to go and pick something up from Hemel Hempstead so I went along for the ride. I love being out in the car when I'm not feeling too good, it really lifts my spirits.

I also had a call from my cousin Jenny. Her little boy Luke wanted to tell me how he was going to be fund raising for charity by reading a book while hanging upside down from monkey bars. He was so excited and his Australian accent so strong I could barely understand him but he made me smile, which was just what I needed. Later on Facebook Jen told me how he'd told his father about the phone call and announced that 'Aunty Hazel has a REAL English accent'. Being Welsh I'm not quite sure how I feel about that but it still made me grin. December cannot come soon enough when I get to meet this little live wire for real.

Today I'm going to be wheeled around Tesco's while I look for some treats to keep me going. It will also be a good test of how I'm really feeling. Then the rest of the day will be spent tucked up on the settee with a book and a bag of Tangtastics.

The garden is now awash with fallen leaves and with each gust of wind more tumble down. Autumn is definitely making it's presence felt but for me, and others who suffer with breathing problems, the drop in temperature is most welcome. My last summer dress went into the wash yesterday and once it has been ironed it will be put away with the others until next year. At the moment I don't waste money on new clothing if I can help it a) because our summers have come and gone in a blink of an eye, and b) because I am never sure I'm going to still be around to wear them next year and c) I hate buying new clothes just because the ones I have are not 'this seasons colour' etc. I also have the 'can I wear it' problem where everything has to accommodate my pump. I think my bank balance is going to get a hammering when I finally get my transplant. In the meantime I've just ordered a sweater and a pair of comfy slippers off the Internet. Living on the edge, that's me.

Storm clouds over Harlington

Well time to sit back and relax with a nice cup of tea and write up a shopping list for Peter, just in case I don't feel like going out after all.

A Letter to Myself

Dear Hazel

I am writing this letter because someone has to give you a good talking too and it may as well be me.

Why are you sitting there feeling guilty? For God's sake girl you are DYING! Got That! If anyone had a good reason for being off sick you do but every single time we have to go through the agonising and the worrying and the guilt. Why? Why do you do that? All it does is cause you more stress which you really do not need. Yes, I know, you have tried to put it under control but trying isn't enough, you need to do it.

Yes there probably are people at work who are moaning about you being off again, I can think of two in particular but what you have to wonder is, if they were in your position would they even be in work? There are some who think you are making up being ill, though how you can fake an IV line for two whole years I don't know, and there are some who dislike all the attention you get. What you have to remember is that the sarky comments, the nasty messages and the bitching is for one of two reasons. Either they are jealous, though why anyone would be jealous of your situation I don't know, or they are scared of you. Whatever the cause, remember the problem is theirs not yours. You cannot control how people view you or how they feel about you so ignore them.

What you have to remember is that your inner strength is something a lot of people do not have. Goodness girl, even I didn't know you had it and it's down righ scary. Despite everything that is happening to you, you still force yourself out of bed most mornings and do a full day's work. From the outside you appear so serene no one can guess how much pain you are in or how afraid you are, or how much you struggle but I know and sometimes I really think you are crazy.

Look at the stupid things you've done. Two years ago you were in ICU with hours to live. You had chronic heart failure and your heart was giving up but did you tell anyone? No, you had 'flu' and you were back at work three weeks later telling everyone you were 'fine'. What's worse you faced that alone. You had no visitors, except you husband, because you didn't want anyone to see you in such a state and worry.

Hazel you are a strong lady but it's time to start letting people in, to ask for help, to admit you can't do this all on your own. The time is coming when you will no longer be able to go into work, you know that, the doctors know that and I suspect even your more enlightened work mates know that. To admit the time has come will take wisdom, too walk away will take courage. You have both.

So my girl, stop thinking you are letting everyone down and stop worrying what others think. If you are ill but want to sit in the garden and read you do it and ignore the petty complainants. Unlike them you may not be here next summer, so enjoy everything you can, when you can. Most of all stop thinking of others, you haven't got the time. You and your transplant are the most important things in the world right now, and if some people can't understand that then you don't need them in your life. You have friends Hazel, probably more than you know, and they are all on standby itching to be useful. All you have to do is stop trying to be Superwoman and ask.

You friend
Hazel

This Old Heart Of Mine

Why is it that you just start to relax, lulled into thinking thins are going really well, your body throws you curved ball?

Last night I was sitting on the settee, relaxing whilst watching Masterchef when I started to feel, what I thought, was a hot flush coming on. Yes I am at that age. However this flush was like no other I'd ever had. Along with the crushing heat my heart started to race and I felt sick, breathless and dizzy. More alarming was the intense pain in my chest and left shoulder. I staggered to the downstairs loo and started to splash cold water on my face but had to grab the sink to stop myself keeling over. I admit by now I was feeling a little alarmed. Twenty minutes later, although my heart was still jumping around a bit, I was more or less back to normal.

This morning, apart from feeling really tired and a bit breathless and sore I'm fine though I've taken the day off as a precaution. I've contacted Carl at the Brompton for advice and am waiting on a call back. I've also booked an appointment to see my GP tomorrow morning, sadly they just couldn't fit me in today and I don't think it warrants a home visit. So with all bases covered I'm being sensible and taking things exceptionally slowly today just in case. I feel bad taking another day off work but I'd rather that than have a turn at work or worse still when driving. Best to take the time to get checked out and then I can return safe in the knowledge that all is fine next week. At least that's what I keep telling myself.

So the last week has been a bit, well, trying to be honest. There is uncertainty at work as shift patterns are changed again, the second change in nine months, and two much loved colleagues are leaving. I won't say I've been that busy but my heart and mind really were not with it this week. I found myself to be frustrated and impatient and that really isn't like me. Yes I know I express a lot of anger and frustration about my private situation but professionally I can usually put all that behind me.

Part of the problem was Andrew. In another brilliant stroke of organisation the university kicked him out of his digs one week before the end of his London placement. I can understand why, they have to get the place ready for the next intake, but this meant Andrew had to get up at four every morning for a six o'clock start. Despite his best efforts I woke up every morning to the sound of his bike firing up and then found it difficult to get back to sleep again as I lay awake hoping he'd make the journey unscathed. That's being a mum for you. The result of all this was that I'd arrive at work already tired and stressed and things would just go down hill from there. Thankfully today is his last day though I was so exhausted from last night's little turn I didn't hear a thing this morning.

So I have a day of doing nothing and waiting in to hear from the Brompton. I suspect I will be dragged in for a few tests, hopefully as a day patient, and everything will turn out fine. Right time for a nap before lunch. Will let you know what's happening tomorrow.

A Chill in the Air

Well I know I was going to take the rest of the day easy but things didn't quite go to plan.

Sorting through the salad drawer in the fridge, looking for something to nibble, I came across a packet of blueberries fast approaching the squidgy stage. I like my blueberries hard and sharp so didn't want to eat them as they were. So I hit upon the idea of muffins. Out came the bowls and mixer and before long I had a dozen muffins in the oven rising nicely. With the baking bug still working it's magic, I quickly cleaned up the utensils and found myself making a Victoria sponge. I'd plopped the mixture into the trays just as the muffins were ready so did a quick swap. In short by five o'clock I had twelve muffins and one very large sponge cake ready to be eaten by tea time. I know it seems a bit much but I have two hungry men at home at the moment so they won't last long.

All baked out, the rest of the day was mine so I lay on the settee watching an old black and white film, I don't even know what it was called, until it was time to do my meds.

In the evening I was surprised to find the X Factor had started up again, another sure sign winter is on it's way. I don't know how but I'd managed to miss all the fanfare that usually accompanies the start of this show, maybe I'd blotted it out, who knows. Anyway I loved the show when Sharon Osbourne was on it so, despite my reservations, decided to give it a go.

It had reverted to the old format of having just the hopefulls and the judges for the first audition. This I thought was much better as you could actually hear the acts and the judges comments without all the noise of an audience drowning them out.  However that was the only good thing about it. The contestants were the usual bunch of the deranged, the oblivious, the mediocre and those who believed that a few tears and a story about a falling out with their mum would get them through, sadly in this case it did. Worst of all was Mrs O's behaviour. Clearly hamming it up for the cameras I found her irritating this time round. Once again this year I'm going to give it a miss, my blood pressure just won't take it.

It was most definitely a cooler night last night than I've experienced for quite some time and as I result I slept like a baby. Today, although quite sunny, there is that unmistakable bite to the air that you only get with the approach of autumn. The back garden is awash with the leaves from the Silver Birch and my plums are ripe for picking, about the only thing I've successfully managed to grow this year. The days of summer are numbered but the weathermen say we are in for a lovely September, I hope they are right.

Today I'm trying a new recipe, cinnamon lamb tagine, I'll let you know how it goes. One thing I do like about the colder weather is the excuse to start making comforting soups and hearty stews. Although I like my salads and start craving them come April, soups and stews are my favourites. Partly because they are so easy to make, basically shove it all in a pot and hope for the best, and partly because you can make huge quantities and freezer it for the days you don't feel like cooking. I have a new recipe for a spiced sweet potato soup that I can hardly wait to try.

In the news two important events caught my eye.

Firstly the vote on whether we should take military action against Syria. The vote went against the idea and I can't understand why David Cameron is so surprised about this. The British people are fed up with war, especially wars that really have nothing to do with us. We have lost hundreds of young men and women in conflicts we had no right being in in the first place. The British people are also wary. Having been lied too by Bush and Blair it is going to take an awful lot of convincing before we trust a politician over a reason to go to war again. Besides our armed services are being slowly but surely dismantled and ultimately we can't afford another war.

The problem is that despite everyone professing to hate Margaret Thatcher, she was the last British Prime Minister, since Churchill, to take us into war and win. And every prime minister since then wants a similar legacy. They want to be remembered as great statesmen but it is hard to be great without a backbone and our recent crop of politicians would be hard pressed to find one between them. However there is hope and it lies with those who voted against Cameron, unfortunately they have also signed the death warrants for their careers. Pity!

The other story is that of Nelson Mandela who continues to be at death's door or improving with mind numbing regularity. This week's see-saw reporting first had Mandela being released from hospital, then they said that was untrue and now, this very morning, they've announced he is being released from hospital although his condition is still serious and is at times unstable. Is it just me that finds all this just a little, well, weird?

Right off to the kitchen to make this lamb dish. Did I mention Strictly starts next weekend? I did? Oh, I won't mention how excited I am then.