Saturday, 31 August 2013

A Voyage of Discovery

This morning got off to a busy start as it was moving day, again, for Andrew.

Thankfully he didn't have that much stuff to move, the bad news is that he was four floors up and no lift so my contribution was to do the driving and then wait in the car park. He seems to be getting the hang of moving now and was all packed up and ready by the time we arrived. In less than half an hour we were back in the car and stuck in traffic on the M1. We've got roughly a two week hiatus now before we are moving him into yet another room for his second year.

It was a case of early to bed and late to get up this morning but I really needed the sleep and I feel much better for it. This afternoon I was looking for something in a cupboard and clearing out rubbish as I went. Does anyone else put stuff aside in case they 'might be useful in the future'? Well I did and found myself wading through old jam jars, set aside for the jam I never made, and bags of cloth, for the patchwork quilt I never finished. As it turned out I didn't find what I was looking for but did get rid off a whole load of junk.

Right at the back of the cupboard was an ornate box which looked rather familiar. I pulled it out, it was much heavier than it looked, dusted the lid and opened it not really expecting anything exciting. Inside were two decks of tarot cards, some jewelery, two very lovely dresses and a real live crystal ball. I was instantly transported back to my twenties and thirties when I was heavily into all things hippy and mystical. In short the younger me in a box. I sat down and dealt a quick reading spread and was surprised at how much I remembered. The I lifted out the crystal ball which felt heavy and warm to the touch. That's the thing with crystal over glass. You can always tell the difference because real crystal feels warmer to the touch. I briefly pondered having a quick gaze but decided against it, my mood wasn't right and I'm way out of practice. Maybe I'll give it ago when I'm alone in the house without any distractions.

I've put the dresses to hang in the wardrobe, sorry the pictures are a bit fuzzy but I was shaking with excitement, I'd thought they were long gone. The green one is made of velvet with lace sleeves, I called it my Anne Boleyn dress, and the black is black lace over red silk, my 'vampire' dress. The jewelery needs a good clean as it has tarnished but there are some nice pieces. The Celtic pendant and dragon earrings look especially good considering how long it is since they've seen the light of day. I have no idea how I suffered the earrings, they are very large and very heavy and I couldn't wear them for long these days.

I can't believe how I managed to forget I had these things. I suppose with the arrival of children and a busy working life, like a lot of women, I put my own interests aside. Well I intend to start practicing with the cards again at least. Very soon I'm going to have a lot of time on my hands so this might be one way of stopping the cabin fever. Maybe I can start hiring myself out to fairs and village fetes, you never know.

I was very surprised and really pleased to get a call from my Australian cousin this afternoon. Jenny and her family are coming over in December and I can't wait. We had a short chat and made a few tentative arrangements. I am so excited I can barely contain myself. I just wish I was fit enough to really enjoy their visit. Please come soon transplant so I can be well on the road to recovery by December.

So all in all a very exciting day and a delve into my past that I wasn't expecting. The only thing I've kept from those far away days are my long hair and my love of incense or 'joss sticks' as some people call them. My house often smells of Patcholi or Jasmine which my husband describes as me 'burning stuff again'.

Well time for a tea and a sit down and maybe a bit of quick revision on the tarot.

P.S. Strictly starts on 7th September. Whoopie-doopie-do-dah!

Friday, 30 August 2013


Arrggghhh!  Why is it that just when you think everything is settling down and life is getting back on an even keel yet another source of stress appears?

Last Friday I received two new pumps to replace the ones I currently have as they have to go back for their annual servicing. At the same time they took away one of my old pumps so I was left with two new and one old. The new pumps programmed really easily and I change my old pump for one of the new ones that very night. Everything went swimmingly and by Sunday I had confidently packaged up my old pump ready for collection.

Monday I arrived home from work tired and fractious, my Sunday night sleep had been destroyed by a neighbour's car alarm going off every five minutes from about five o'clock so I went to work already shattered. A busy day ensued and I came home hoping to just do my meds, change my pumps over and have an early night. One pump had other ideas. The pump I had on was fine but the one I was about to put on threw a hissy fit the minute I turned it on.  It squealed out a warning that I had air in the line. This sometimes happens so I removed the cassette and examined it carefully. I couldn't see any air in the cassette or the line so I reattached the cassette and started again. Once again the alarm went off so I re-primed the lined and reattached the cassette. Off went the alarm once again. Thinking I was making a mistake I called Peter in to check the line. I thought that as I was tired maybe I was missing something. He couldn't see anything either. On went the cassette, off went the alarm. Half an hour past and I'd re-primed the line so often there wasn't enough medication left in the cassette for me so I made up some more and completely replaced the line and cassette figuring maybe one of them was faulty. Off went the alarm again and I lost it. I threw the machine on the floor and started stamping on it, that didn't shut it up so I grabbed the nearest thing, a sandal, and beat the thing until I burst into tears and sat on the floor exhausted and howling my eyes out.

Once the storm had passed Peter appeared with the old pump which we attached without any problems, he knows when to stay out of the way after many years of practice. In that one moment all my anger and frustration that I'd kept inside about having to wear the damned thing in the first place just came pouring out and I felt so much better. As we were sorting out the pumps I told Peter that if I'd had a hammer I'd have probably broken it into pieces. 'Why do you think I keep the hammers locked in the shed,' he replied sweetly and we both burst out laughing.

The problem of the pump remained though and I decide to call Carl at the Brompton after work the following day and run it past him.

Tuesday and I called Carl who sympathised and said the best way to deal with it in the short term was to turn the air detector off. We spent almost an hour, me pressing buttons while he read out the instructions over the phone. We managed to stop it squealing but couldn't turn the air detector off. Carl decided that the pump was obviously faulty and said he would get in touch with the supplier in the morning and ask for it to be replaced. A new pump arrived Wednesday evening and so far so good but I hate to think what I'd be capable off if one of them breaks down again.

The week has been a trying one with broken nights, if that car alarm doesn't get fixed soon I swear I'll be having words, and busy days. I'm certainly feeling it at the moment. I don't have the get up and go I once had and have had to talk myself out of bed everyday. It could just be lack of sleep or it could be another step on the slippery slope. I'm thinking of asking to reduce my hours again. Currently I do thirty one hours per week but I'm wondering whether a drop to twenty five or even twenty might be beneficial, especially with winter fast approaching. I'm seeing my teams at both the Brompton and Papworth at the end of September so will delay my decision until then but I definitely think a reduction is on the cards.

Tomorrow we move Andrew back home as his summer placements come to an end. Despite the panic of not having enough hours to pass the course he has now done thirty hours over quota as he loves it so much. The only thing he's failed to get signed off is a birth but that is one of those things he can carry over into next year anyway as they are notoriously rare. He's home for two weeks and then we move him into his new place for the start of the autumn term. I cannot believe my little boy is already in his second year. This time next year he'll be out working full time with a mentor for his final year but at least he will be earning while he learns, which takes the pressure off us.

Laurence celebrated his twenty fifth birthday on Tuesday and I cannot believe it. I am so proud he has grown into the man he has become. Unfortunately I won't be seeing him this weekend as he is working but hopefully I will next weekend and will be making him a birthday cake.

Well my stomach is rumbling, I woke up late so haven't had any breakfast, so it's off to the kitchen to rustle up some barbecue chicken and rice.

Oh did I say? I saw the trailer for Strictly last night, so, so excited. Not quite so excited at Vanessa Feltz being a contestant but there you go, you can't have everything.

Sunday, 25 August 2013

Painted Ladies

I nearly choked on my tea this morning. I was flipping through my morning paper when I came upon the unedifying sight of Cheryl Cole's bottom covered in the most hideous tattoo I'd ever seen.

Why do people do that to themselves? Now don't get me wrong I have nothing against tattoos as long as they are discrete and tasteful. This one is neither of this things. Some will argue that it will be covered up most of the time so what's the problem? Well for one she has splashed her bottom all over the papers, that doesn't sound much like she intends to keep it covered does it. Small tattoos can be very classy, big, hideously coloured ones? Well, they don't call them tramp stamps for nothing. Cheryl my dear, your roots are showing and I'm not talking about your hair. To be frank this tattoo smacks of desperation. Desperate to prove she is still young enough to be rebellious. Desperate to keep her name in the headlines. Desperate to prove that her career is not at an end. Excuse me? When did she last sing? One thing I can be 98% sure of is that give another decade and we'll be reading about how she regrets ever getting the thing because tattoos are so 'uncool.'

Tattoos look better on men.

Another aging 'pop princess' has also been desperately trying to prove she is still 'up with the kids' by wearing a hideous gold metal grill over her teeth. This is apparently the height of fashion. I remember when fashion was there to enhance your looks and make you as attractive as possible. Now it seems the uglier the better. I am, of course, talking about Madonna. When she first came to notice back in the eighties she was truly gorgeous. Now she looks like a shop dummy whose teeth have been left unfinished. A bit like Edward Scissorhands only in this case Madonna Scissorteeth. She's no stranger to the tattooists needle either.

They say that when you reach a certain age a woman has to choose between her face or her body. When you hit middle age it is natural to 'fill out' a little and there is a reason for this. Extra weight acts as padding for more delicate bones, protecting us from breaks and fractures. Most people will not like being heavier but a fuller face means less wrinkles, it's natures version of botox. So you have to choose, carry a little extra weight and have a younger looking face or work like a Trojan to get the weight off and risk a thin gaunt face with loads of wrinkles. Madonna, as we all know, chose her body, which is why her face has more plastic in it than my microwave. There are even rumours that she has had fat pads put in to give herself plumper cheeks. Why spend so much money when a Mars bar or extra Yorkshire pudding  at Sunday lunch will do exactly the same for a fraction of the cost? I just don't get it, I really don't. And to be honest, despite all the work, Madonna's super fit body may be sculptured, she may have biceps of steel and a washing board stomach but is it attractive?

Yesterday I did my annual round up of my PH journey so far and I am amazed at how many of you related to what I'm saying. Almost every single one of those that contacted me via facebook or email started their PH journey with a diagnoses of Asthma. Maybe it is time that Asthma clinics and PH clinics got together and worked on a plan to sort out the real asthmatics from the PH suffers as quickly as possible. We all know that early diagnoses means a longer life expectancy but most of us are WHO class three or four when we are diagnosed, which is far, far too late. Joint clinics maybe? At least at the diagnostic stage to determine exactly what it is surely would be sensible. Thank you for listening to my ramble yesterday, it was really great to get it all off my chest. I feel more settled now and ready for the next step.

It is another dreary day at Chez Roberts. The rain hasn't stopped since early Saturday morning and it is so dark I've had to turn the study light on in order to see my keyboard. I was rather hoping for a lie in but was rudely awoken by a text from Andrew at half past six stating his bike was playing up. He made it to work and thinks he'll get home but I have been put on standby in case I have to do a rescue mission. At least  it is the last day of his placement so we will have a few days to sort it out. Apart from that little bit of excitement the only thing I've got to look forward to is the Grand Prix this afternoon. With three Brits in the top ten of the grid it should be quite exciting, especially if the rain is coming down in buckets like it is here.

Peter is braving the rain this morning to attend a computer fair in the hope of picking up some cheap bits and pieces so I am at home on my own for a change. However the scope for mischief has been severely curtailed by the weather so I'm off to make some blueberry muffins instead.

Saturday, 24 August 2013

When September Comes

Five years ago today I was still blissfully unaware I had PH. I'd spent most of the summer planning my lessons for the next year and I remember being particularly pleased with myself because I'd designed a term of lessons for my year sevens based on The Apprentice. As it turned out they loved it and it earned me a high praise from Ofsted. I was also looking forward to enrolling in a part time university course. I was going to do a degree in Child Psychology. I figured if I understood how the little darlings thought I'd be more effective at teaching them. I was happy at my school, happy with my home life and for once I couldn't see anything but good things on the horizon.

On September 12th 2007 I was given the diagnoses of Pulmonary Hypertension and felt relieved. If only I'd realised what it meant maybe I wouldn't have been so delighted. So why was I so happy to find out I was ill?

My problems started about three years before. I'd always been fit. I swam, I walked everywhere, I did weight training and I had an exercise bike and stepper (a machine you walk on which offers resistance so you are always going up hill) at home for when I didn't have the time or inclination to go out. I began to feel breathless during swimming and found it hard to do as much as I had been doing. Then when out walking I found myself stopping to catch my breathe after a steep hill or flight of stairs. I went to my GP who diagnosed a worsening of the asthma I'd had since early childhood. My inhalers were changed and for a while I felt there had been some improvement. I had been under a lot of pressure at the time. I'd just completed my teaching degree and was working at the worst school in the area. My head of department had upped and left half way through the year leaving just me and another newbie to run the department and take over his classes. In short I hadn't had the time to do much exercising and felt my fitness was waining, so I threw myself back into it and for a time all appeared well.

About a year later things started to deteriorate again so I increased my exercise and hoped for the best. I was now at a much nicer school and was in my second year so was no longer the newbie teacher everyone played up. One morning while preparing for class with Ashaf, one of the technicians I worked with, I suddenly collapsed. I couldn't catch my breathe, I was grey and sweating and Ashaf thought I was having a heart attack. Other teachers arrived and started to do strange things such making me breathe into a paper bag. The paramedics arrived, took my blood pressure, turned white and blue lighted me into hospital. This event was the beginning of two years of patient ping pong.

The cardiac department said it was a lung problem while the lung department said it was a cardiac problem. Over the course of two years I was given diagnoses that ranged from the sublime (severe asthma) to the ridiculous (you wear your bra too tight) but I just kept on deteriorating. Eventually my cardiologist said he would refer me to a psychologist as he thought most of it was 'in my mind'. I wasn't happy about this but had secretly begun to doubt my own sanity so agreed to at least attend the initial appointment. In the meant time I was told to keep exercising and things would get better.

Then things took a turn for the worst. I was on my stepper in the back garden pounding away with my music blaring in my ears and about five minutes from the end of my timed session. I suddenly felt overwhelmingly drained but I pushed on and then staggered into the kitchen where I grabbed a drink and slowly did some warm down stretches. Normally my heart rate returned to normal fairly quickly but today it just kept going and then started to increase until it got to 182 bpm. I couldn't breathe and I felt sick. I called for Peter, who thankfully was home that day and he drove me straight into accident and emergency. I was put in the waiting room and after an hour a bored looking nurse came out and sat next to me to take my pulse. Things moved very quickly after that and I ended up on the cardiac ward for a week. The psychiatrist was cancelled but they still had no idea what was going on. I was sent home with instructions to stick to gentle exercise for the next month. Two weeks later I was watching TV when my heart thumped. Within minutes it started racing again and I was back in hospital. This time the drug didn't work so they had to cardiovert me (shock my heart back into rhythm) and then referred me to Harefield for an ablation as they now thought I had Atrial Flutter or AF.

My appointment duly arrived and in June 2007 I arrived for a pre-op consultation. The procedure was explained to me and loads of tests were carried out then I had to wait to see the consultant. When he arrived he looked very grave. He explained to my that the ECG my local hospital had sent of my heart rate while in flutter and the tests they'd just done had thrown up some surprising results. He thought that my dodgy heart rhythm was a symptom of something much more serious and not just a stand alone condition as first thought. I was asked if I was in any hurry as he wanted another doctor to see me. This doctor was a specialist in Pulmonary Hypertension. I'd never heard of that but figured from the wording it had something to do with blood pressure and lungs.

Dr. Swann was lovely. She explained what PH was and went through my entire health history before announcing that she wanted me to attend the Royal Brompton for a series of tests including a right heart catheter test, I didn't like the sound of that but was so fed up I just wanted a yes or no answer so agreed. I received a letter the following week booking me in for 10th September, which was a pain because it was right at the start of the school year. My employers though were extremely sympathetic, told me not to worry and to go for it.

September arrived and I had a very busy week. I think they tested everything except my eyes and my IQ. On Wednesday morning several important looking doctors and a gaggle of nurses gathered around my bed. Yes I had PH, worse I was extremely ill and was on the border of WHO class four (this is end stage). My extreme fitness had worked against me and kept my symptoms at bay until my poor heart could no longer take the pressure and was sending out frantic danger signals. The reality check was being told I'd be unlikely to see my fiftieth birthday, at that time I was just coming up to forty eight. Despite all this the relief of actually being told I was ill and it wasn't all my imagination made me smile like an idiot, it was only when I sat in bed reading the literature they had given me that it began to dawn on me that I was in serious trouble. Because of the severity of my condition they started me on drug therapy straight away and I was told not to go into work until I was stable.

Three months and several drug changes later I was finally stable on Sitaxentan. My life returned to normality, more or less. I was given permission to do some light exercise so I still went swimming and I walked. I had a lot of thinking to do and walking was my therapy. Sometimes I'd find a quiet spot and sit and cry my eyes out. Mostly I just seethed with anger. I became, for a short while, not very nice. I took my frustration out on everyone, my medical team, my family, my friends, my work colleagues, my students and even strangers on a PH support forum who tried to help me through coming to terms with my illness. Going back to work helped. I didn't have time to think properly but it also revealed how ill I really was. Back in June I was still operating at full tilt. After a six month break I found the going tough. My normal school day started at eight and ended at four, then I'd go home have something to eat and read the paper. Then I'd play with my boys, take them swimming or for a walk or up the park. Tea was at six then the boys were dispatched to bed or to do homework and I settled in the dining room to mark books and go through the following day's lessons. I'd pack up around nine or ten, watch the news and go to bed. Now I'd arrive home at four, lie on the bed and sleep until six. Thankfully Peter was working from home by this point so he was able to deal with the boys. I'd eat, spend about an hour on my school work and then flake in front of the TV. My work and home life began to suffer.

A year later I moved to a school closer to home and worked as a cover teacher. This kept me in the classroom but relieved me of all the stuff that went with it such as the planning and marking. My idea of doing another degree went to the wall about this time too. After just one year I decided I couldn't do it anymore and found the job I do now. I'm still required to use my brain but I spend the day sitting down and can go at my own pace.
Since diagnoses I've gone through every drug on the market culminating in the IV Flolan I use now. I've had three further cardioversions and finally had my ablation in 2011. I've nearly died, twice. I'm now on the transplant list and I have outlived my use by date by three years.

When I think back over all I've been through, all I've achieved and all the set backs I am amazed I'm still here. I've lost a lot of PH friends over those five years and each loss makes me wonder how much longer is left for me. I could defy all medical predictions and live another five years or more. I could get the much longed for call for transplant and end up having another thirty years in front of me. All I know for sure is that my time is running out. Every August/September I reflect on my PH journey and count off another year. My biggest wish is that next year I can start counting off the years post transplant.

Friday, 23 August 2013

When Sliver Turns To Gold

Yesterday I arrived home from work, went into the kitchen to make a cup of tea and glanced out of the window.

To my utter dismay I saw a few flecks of yellow among the green of the Silver Birch. September is only next week and autumn is already making it's presence felt. Now I love autumn, it is my favourite time of year but it's arrival always catches me by surprise and makes me feel sad that the opportunity for sitting in the garden and reading is fast diminishing. I always imagine myself sitting outside on a crisp sunny autumn day, wrapped in blankets, a steaming cup of tea by my side and perfectly happy. In reality the effort of setting up the furniture and taking everything I need to keep warm out into the garden is just too much effort.

Goodbye until next year.
Part of the problem is my PH. I feel the cold more than I used too and cold air badly affects my breathing. So in order to enjoy any cold day I have to resemble Scott of the Antarctic. Wearing so much clothing tends to take the enjoyment away. Maybe I'll find it easier after my transplant.

Talking of which it is now eight months since I went on the list and I've finally stopped jumping when the phone rings. In fact now I look on rogue phone calls with a mixture of resignation and disappointed. When I first went on the list I was excited and, probably foolishly, convinced I'd be getting a call almost as soon as I'd arrived home from hospital. In fairness some of my expectations had been fuelled by the transplant coordinators telling me that although they couldn't say when I would get my call, 'it could be tonight, tomorrow or next week'. Yes they did also say I should be prepared for a long wait and also consider the possibility that my call might never come. Being forever the optimist I didn't really consider that as a possibility but now the reality has kicked in and I've bedded down for a long wait.

Right! Enough of feeling sorry for myself, how was my return to work?

Well I have to admit on Wednesday I really thought I'd made a mistake. I also thought I was coming down with another chest infection as my chest hurt. However Thursday was much better as I got into my stride. However I don't think I was functioning at my best and I found it difficult to concentrate. I now have three days off so I'll rest up and hope I'm back to fully functioning by Monday.
Last night was the start of Celebrity Big Brother. Last year I watched the first show to see if there was anyone worth watching, there wasn't so I gave it a miss. This year I couldn't even bring myself to watch the opener and having now seen the list of who is in there I'm glad I didn't waste my time. I only knew two names for sure and neither held any particular interest.

In the news I have to say I am alarmed and sadden by the news coming out of Syria. How any leader in his right mind could poison his own people, especially women and children, is beyond me. As horrible as this event was I'm hopeful that some good will come of it. Saddam Hussain did something similar and look what happened to him.

Well it is grocery day and I need to get myself into gear and get on with it. Then I'm battening down the hatches until Monday and resting. One day I'll be able to tell you I am spending my weekend climbing a mountain or walking around a country house with a lot of gardens. Wouldn't that be nice?

Tuesday, 20 August 2013

The Transplant Games

Feeling so much better today.

Yesterday I was convinced my infection had descended to my chest as my breathing got worse and worse but I was puzzled because I had no pain, no cough or any of the other signs. Then I thought I might have a line infection, I've been paranoid since my friend Stacie got one and didn't realise until it was quite advanced. Again though I had no pain and checking the wound it was clean and odourless. So I was left scratching my head and then it dawned on me. I went and read the leaflets that came with the meds for my bad throat. I usually read everything but had only bothered with the leaflet from the antibiotic as I figured it was most likely to cause problems. The antibiotic was fine but the most common side effect of the spray was shortness of breath. Terrific, if I'd bothered to read it I would never have used it. So I stopped taking the stuff straight away, I had been using it every two hours, and this morning my breathing is better. Not quite as good as before I became ill but I suppose it will take a day or two to calm down.

Today I'm going to spend my time doing nothing, much like yesterday really. I slept really well last night and Peter had to wake me with a cup of tea to do my meds. This may be why I'm feeling so much better. Yesterday I kept drifting off on front of the TV I was so tired but I made myself stay awake as much as possible knowing that if I slept during the day I wouldn't get any sleep again overnight. My tactic worked and so I'm fairly bright and breezy this morning. If the weather is good I might even venture out to read in the sunshine and get a bit of fresh air. I know if my little problem reads this they'll probably complain, they have before, but it is ridiculous to think I , or anyone else, can go from sick bed to work without testing the waters first. And personally I don't see where the problem lies with sitting out and getting some fresh air when you are sick, it's not like I'm out hiking in the hills or anything.

Last night I saw the first advert for this year's Strictly Come Dancing. I am so, so excited I can't tell you. It is my all time favourite programme, only 'I'm a Celeb' comes close. So now of course I'm anxious to know who's on it. I've read rumours and speculation but you never really know until the first programme when they team everyone up.

Of course there is also a certain sadness to the start of Strictly as it's arrival heralds the end of summer and we know we are soon going to be plunged into dark evenings and cold, wet days. If the last couple of years are anything to go by we will have snow before Christmas. Although Autumn is my favourite time of year I do feel a certain sadness for the passing of the long hot days spent reading in the garden. This year winter will be slightly different for me than previous years though. Now I work shorter days I will at least see some daylight. I used to drive to work in the dark and drive home in the dark. Now I will at least see some daylight leaving work at four.

While off work I've been keeping an eye on the Transplant Games that are taking place at the moment. I must admit to feeling a twinge of jealousy when reading about people running, jumping and swimming. I so, so miss that part of my life. I hope that I too will be able to take part one day, maybe the next games, you never know. With autumn coming and my eighth month on the transplant list being marked tomorrow I can't help thinking now would be a very good time to have the operation. I can recover at home and take walks in the crisp cool air and not worry about how to get into work during a snow fall. In fact it would be the perfect time because come summer again I should be fit enough to at least go and paddle in the sea in Aberystwyth. Knowing my luck I'll get the call during the Strictly final.

Also in the news are the first official pictures of Prince George. These pictures are sweet, natural and gives not doubt that Kate and William are blissfully happy. However there is controversy. Why? Because these pictures were not taken by a stuffy court photographer in an ornate palace room. These were taken by Kate's dad in his back garden. Yes they are informal and unstuffy but isn't that what first baby pictures are supposed to be?

Well time to go and eat. I weighed myself this morning and I'm back down to seven and a half stone so I've got yet another mountain to climb. It just never seems to end.

Monday, 19 August 2013

Sleep Deprived and Grumpy

I'm going to have a small moan, please stick with me it will be over soon.

I left the decision about going back to work until this morning as I thought I'd have a better chance of knowing how I felt when I got up. In the end fate took the decision out of my hands by giving me the worst night's sleep I've had in a very long time. I was hot, I was cold, I was uncomfortable, I didn't feel sleepy, arrggghh! It just went on and on. The last time I looked at the clock it was four, the next time it was ten to seven. I got up and rang work and, for some reason I couldn't fathom, was put through to my main boss. I explained the situation and he was nothing but sympathetic, he told me to take care of myself and to only come back when I was better. I went back to bed and dozed fitfully until eight when I gave up and got up to make a cup of tea.

Enjoying a cuddle on Mum's lap

My problem is with someone I know, who has so little going on in their life, they've decided to monitor mine. This person regularly complains very loudly about those they work with who are off sick. In my case they have made it very plain that they don't think I'm 'that ill' as if I were really 'that ill' I wouldn't be working. This attitude to disability seems to have come from the dark ages and cannot understand why this person has suddenly become like this. We used to be friends but now it is as though I'm their worst enemy, but I digress. I have to say my bosses and supervisors have been nothing but brilliant, but of course they have been told a lot more about my situation than some others as I keep my problems for those that need to know. However when I go off sick I'm labeled as 'pulling a fast one' etc, etc by this someone. Now thankfully most people know that I do not take sick days for no reason. I've been in work when I can barely walk so when I say I'm too sick to go in, I'm too sick to go in and that isn't questioned by anyone except this someone. I know I shouldn't let this someone get to me. The problem is theirs, not mine but it is so bloody frustrating to know that there is someone out there who just doesn't believe you're ill, even when you are on the transplant list. Mind you they probably don't believe that either.

There are a few possibilities that have gone through my mind as to why this person has broken off our friendship. Maybe this person is so distraught about my situation they would rather distance themselves from me than risk loosing me. Maybe this person is frightened of the way I'm dealing with my situation knowing that if it were them, they wouldn't cope half as well. Maybe they disapprove of transplants, the problems started when I was going through the assessment process so this is a real possibility. Or maybe they are just pig ignorant with a nasty streak a mile wide that I failed to notice. I doubt I'll ever work it out.

Bloody kids!

So back to pleasanter things. The stew was delicious and, as everything was soft, I was able to eat a fair portion. That made me sleepy so I dozed in front of the TV for an hour, completely missing the programme I intended to watch, before spending the rest of the afternoon reading. It was a quiet day with both boys away from home and such a contrasts to the boisterous Saturday. Poor Tarmac was made the butt of a joke when Andrew put a tin foil hat on him. I don't quite know why but I took a photo. He was much more relaxed yesterday in the peace and quiet and dozed on my lap for most of the afternoon.

Andrew arrive home from his two night shifts at around eight this morning. He told me to wake him at twelve and then promptly went to bed. I am anticipating as much success in getting him up at twelve today as I had getting him up at six on Saturday. Sigh!

Well my eyes are trying to close so I'm going back to bed to see if I can get an hour or so. Knowing my luck I'll wake up at five and won't be able to sleep tonight either.

Sunday, 18 August 2013

The Frog's Chorus

Went to bed really early last night to try and counteract being awake at four on a Saturday morning. The wind was howling outside and there was the occasional drumbeat of rain drops on the window. Very comforting, very soothing, I went out like a light.

I awoke this morning to bright sunshine and high winds. Perfect for drying the pile of washing left behind by Andrew, so Peter loaded the washing machine and returned to the bedroom armed with tea and the morning papers. Following a long relaxed read I had a long relaxed bath and then, with Peter's help, hung the washing out. By the time I'd done all that it was ten and time for yet more tea. Of course the minute we sat down with our cuppas the weather changed and now dark clouds are scurrying overhead threatening rain. Just typical!

Yesterday was a good day. In the end Andrew woke naturally about ten thirty and decided to stay for lunch so he could see Laurence before going back to uni. I am often asked why he is still at uni when all the other students have gone home. The reason is that his is a very intensive course and involves six weeks of placement with the ambulance service in the summer.

We had a lovely pasta meal, which I did manage to swallow but we talked, of course, and this morning I feel I'm almost back to square one as my voice is a lot more croaky but not as sore, though the frog in the throat has returned. I'm keeping my mouth shut again today in the hope I can repair the damage but the question of work now raises it's ugly head. My job is basically talking. I answer phones, discuss problems, offer solutions etc, etc, all by talking, Then in between calls I talk to my colleagues, the people in the canteen and anyone passing who says hello. The only time I'm not talking is when I'm in the loo or eating. On top of that it is a loud environment where whispering is just not going to cut it. I'll feel guilty about not going in as physically I don't feel too bad, however am I going to be any help if I can't talk properly? This is a decision I can only make later in the day. If my voice improves dramatically then I'll go, if I'm still croaking then obviously I stay put.

I know I've promised to be nice to myself but it is really difficult when I don't actually feel ill. I feel tired, yes but not ill. Of course, as with any serious illness, the name of the game is prevention. As I already have one infection my defensives are weakened and it would make it all too easy to pick up something else or for the current infection to worsen and spread. This is what I think a lot of people don't understand when it comes to PH. If you look well, sound well and by your own admission, feel well then why can't you go to work, go shopping, go to the theatre etc, etc. They just don't get that this stage is actually the most dangerous point for you. Someone once told me, 'you only have a cough, that's no excuse to stay off work'. Feeling guilty I went back to work then ended up taking three weeks off, including one in hospital with pneumonia. If I'd stuck to my guns and taken the extra couple of days as I'd planned then I'd probably been OK. This is not something I plan to experience again but it is hard when you know there are people out there who think you're 'slinging the lead'.

Today I'm making my famous Moroccan stew for lunch. I love one pot cooking, it is easy, quick and less washing up. This is just  'shove it all in the pot and slam the lid on' cooking so no effort at all, perfect if you are feeling a bit under the weather but want something tasty to eat. I'm sure I've probably shared this before but if I haven't and you fancy a go, here's the recipe.

Moroccan Stew

1 tablespoon olive oil
1 red onion thickly sliced
2 carrots cut into chunks
450g beef steak cubed (lamb works well too or Quorn or soya if you want to go veggie))
1 tablespoon of ras el hanout spice (most large Tesco's have this, it comes in a silver tin)
2 garlic cloves crushed
1 tablespoon clear honey
100g soft dried prunes diced (really you cannot taste them when cooked)
500ml of beef stock ( lamb stock or veg stock if you are doing the lamb or veggie version)
100g soft dried apricots halved
200g tinned chickpeas (400g if doing the veggie version)
couscous or rice to serve.

Over a medium to hot heat pour oil into a deep casserole pot and fry off onions and carrots until soft. remove from pan, add a little more oil if needed. Toss meat in the spice rubbing well in until completely add to pan and brown on all sides. Return the veg and add the garlic, honey, prunes and stock along with any left over spice. Cover and cook on a low heat for 50 minutes. Remove lid and add apricots and chickpeas, cook uncovered for a further 10 mins then serve with couscous or rice. Simples and delicious! This recipe serves four and freezes well. When I have room in the freezer I make double so I always have a nice warming emergency meal on hand.

Well now I've shared it, I'd better go and cook it.

Saturday, 17 August 2013

Conflict of Emotions

Bonnie Tyler eat you heart out!

Yes the voice is back, albeit a croaky one. I've been quite good the last two days and kept my mouth shut for most of the time as instructed, so today is the day I can start talking again. I'm being careful though and am only speaking very softly, almost a whisper, so as not to strain anything. On the plus side my throat feels much more comfortable and I no longer feel like I have a golf ball stuck in it.

I've lived on a diet of soup, yogurt, smoothies and mashed potato so far but today I'm going to try something a bit more ambitious and am making a pasta. Frankly I'm bored and need something with a bit more bite to it, literally. And of course Laurence is coming over for lunch so I can hardly serve him a pot of strawberry yogurt.

I woke early this morning, around four, just in time to hear Andrew going to bed. He is starting another weekend of night shifts today so forced himself to stay awake as long as possible in order to adjust. This has left me with a dilemma though. His instructions were to wake him around six, so he could travel down to his digs nearer the ambulance station, where he'd continue his sleep until it was time to go to work, around four thirty this afternoon. So far I've called him at six, seven and nine. Each time he has said he'd be up in a minute and then promptly fallen asleep again. It is now ten and he is out cold. I am tempted to leave him as I know he will have a less disturbed sleep here, his neighbour plays music very loudly all day, but he'll have to get up earlier. I think I'm going to lean towards quality rather than quantity on this occasion. It may mean he is more tired tomorrow morning coming off shift but that might mean he sleeps through his neighbours music. Just hope he sees it that way.

I had a weird dream/nightmare last night and can't make sense of it. I was at a hospital and I'd obviously had my transplant as the doctor was telling me that my lungs hadn't taken and I only had eighteen months to live at best. The next thing I know I'm at a party and am cheerfully telling people that I'd had a transplant and was so happy. The dream ended there but I can't make sense of it. Why would I be released if the lungs hadn't taken? And why give me such a long prognoses? Very weird, but then since Anne's death I have been having some very strange dreams. I'm also having problems when awake. One minute I'm desperate to get the call, the next moment I'm almost in a state of panic that I might actually get the call. Underneath it all is the dread that, after all the waiting and fighting to get on the list, that when the call does come I'll refuse the transplant.

I really do not know what to do about this. I was so sure that I wanted to have the transplant and now I'm not so sure. When I'm well I think 'well PH isn't that bad, I can still work, I'm still out and about'. Then I think 'I hate this machine, I just want to be able to go for a walk, climb a hill or go swimming'. I'm not usually indecisive or unsure of myself but for some reason I now just constantly swing from one extreme to the other. I've spoken to my counselor about this and she says it is normal to have doubts, she'd be more worried if I didn't. So I guess I'm just going to have to work through it and hope that when the call does come I'll have the courage and confidence to say 'yes'.

Well that's just about it for today. I'd better get myself down to the kitchen to prepare for lunch. At least I'll get to feed Andrew before he goes, just hope he sees that as a benefit.

Friday, 16 August 2013

Chopping, Dicing, Shredding and Slicing

Well I've had my Tefal multi choppy thing for a week now and have finally tried all the blades.

The overall impression was that things improve with practice, especially as the instructions that came with it were hopeless. It was a bit fiddly at first but I soon got the hang of it and can now report back.

It is excellent for shredding lettuce, cabbage etc, in fact I'd say this is what it does best. It is ok at grating cheese but much better with carrots. Slicing cucumbers, carrots or onions is good, tomatoes a disaster. As for dicing onions, well that's a bit of a mixed bag and I thought it would probably have been better to do them by hand.

My advice would be do not use on soft fruit and veg such as tomatoes or bananas, you'll just end up with mush. Make sure your cheese is hard, anything even slightly creamy sticks together and instead of nice even gratings you end up with gooey lumps. I tried it on cheddar and still ended up with lumps, especially on the fine grater. It was excellent with Parmesan though. Finally if you value your eyes and want evenly diced onion do it by hand. It squirted out so much juice the whole family had stinging eyes, even those not in the kitchen. I thought I'd gone blind and still ended up having to chop some of the bigger pieces by hand as they were too big for what I wanted. It you've got a really hard veg such as swede slicing seems to be the only option, it certainly wouldn't dice.

Now of course I'm still learning with this machine and maybe the more I use it the better I'll get. Yes it has saved me time this week, and sliced fingers, but it isn't as good with everything as I'd hoped it would be.

I'm feeling a bit better and slightly alarmed.

Reading the leaflets I got with my throat medicine I discovered a rather worrying thing, especially as I take inhaled corticosteroids. If you take a lot of these inhaled medicines you are more prone to throat infections or, even worse, thrush. The problems is that no matter how hard or deep you suck some of the drug will land in your mouth or the back of your throat and stay there until you swill it away. This can interfere with the delicate balance of bacteria that lives in your mouth and throat and set off fungal infections etc. The danger with thrush is that untreated it can travel down into your lungs, something all PHer's or anyone suffering with lung problems need to be aware of. The prevention is very, very simple thankfully. Swill and gargle with water after taking your inhalers. This will wash the stuff away and if you want to be doubly sure swallow a bit of fresh water, not the stuff you gargled with, to ensure nothing sticks in your throat.

Now I've been on these inhalers for years, long before I got PH, and have never once been told to swill my mouth after using them. If you use or you know someone who does please warn them because the medical profession seems incapable of doing so.

The doctor didn't say I had thrush but I'm willing to bet that was why she took a swab, to check.

Having said that my throat is more comfortable today but my voice is still squeaky. Overall I'm still pretty tired but feeling not too bad. I'm living on soft foods, yogurt, soup, fruit but I don't mind at least I can eat all the stuff I love.

As I don't feel that unwell I went out briefly to supervise the Tesco shop, if I left it to my men it would cost twice as much and they still won't have what I want, and witnessed a shoplifting attempt. The chase left the shop and carried on outside. I'm not sure if they caught him, I hope so, thieving scum bag. The fresh air did me good but I was almost dead on my feet coming back. The rest of the day is going to be spent with my feet up doing nothing, followed by a long sleep and we'll see what tomorrow will bring.

Excited as Laurence is coming to lunch tomorrow. Doubly excited because my cousin has booked her tickets and will be here in December. I'm hoping I'll have had my transplant by then so I'll be fit enough to really enjoy her visit. Here's hoping.

Well the settee calls, until tomorrow.

Thursday, 15 August 2013

Another Day, Another Infection

This is an early blog due to the fact I'm at home again, this time with a throat infection.

I've had a sore throat for going on a week but it has been mild so I've gargled with salt water and just got on with it. Then yesterday I felt overwhelmingly tired and my voice was a bit croaky. I just thought it was the residue effect of the fun day I'd had on Tuesday. I was so tired I was in bed by nine and almost went straight out, I didn't even have the energy to read. When I woke up this morning my throat felt like I'd swallowed glass and my voice was practically non existent. I rang work then went back to bed until the doctor's opened.

I was lucky enough to get a cancellation but my heart sank when I actually walked into the surgery. My favourite GP in the practice retired last month and I was face to face with her replacement.

Like most PHer's I dislike meeting new doctors because they do one of two things. Either they pretend they know more about the condition than you do, after all they are the medical professional and you are just the unqualified patient. Or they don't believe you when you say you need things like antibiotics etc. Thankfully this was an altogether pleasanter experience than I was expecting. She was quite young and willing to listen to me. I got the impression that she'd either encountered PH before or she'd been warned about me and had bothered to do some research. I know for a fact, as they've told me, that I'm the only PH patient they have and the only person waiting for a transplant so I'm their 'special' patient. This status ensures I get to see a doctor on the day I ring in no matter how full they are, which has saved me from ending up in hospital on more than once occasion. What ever the reason I was so grateful not to have to explain everything to her and then argue that I did need something stronger than salt water because of my poor immunity. She did look a little shocked when she took my blood pressure and oxygen sats but I assured her both were in normal range for me, which she accepted without argument, result!

After a lengthy examination including the taking of a swab from the back of my throat, she prescribed an antibiotic mouthwash that I'm to gargle with four times per day. She said she preferred to give me this rather than conventional tablets as there is less likely hood of it getting into my system and upsetting my other meds such as my warfarin. She also gave me a throat spray which will sooth the inflammation and help with the pain. The worst bit was when she told me to limit my talking as much as possible and, if I can, keep silent for the rest of today. Like I'm going to manage that! She said she will ring if the swab comes back with anything nasty. Prognoses is that I'll be feeling better by Saturday and back on my feet by Monday.

So another day on the settee being waited on hand and foot. At least it is good practice for all the resting I'm going to have to do post transplant.

Talking of which, I see that Holby City managed to compound it's disastrous portrayal to transplantation by prolonging the event in it's latest episode.

This time the mother of the donor came face to face with the recipient. After all the fuss this has created you'd have thought they'd have altered or even pulled this week's effort. Although it ended up with the mother of the donor deciding it had all been for the best in the end, the damage has been done.

On the plus side, figures released yesterday shows a 6% increase in transplants over the last twelve months. That means four thousand people received their new organs thanks to the generosity of donors and their families. However, although brilliant news, three people a day still die waiting for their chance of a new life and almost ten thousand are on the transplant list, hoping and praying they will be given the ultimate gift. Please do not be taken in by silly fictional drama's and, if you haven't already, sign the list today.

Tuesday, 13 August 2013

It Was 30 Years Ago Today.

Yes the big day has arrived and Peter and I have reached the big thirty. I cannot believe it, where the hell did all that time go? We got married at St Michael's Church, Aberystwyth on a glorious summers day to the sound of seagulls and the sea.

So what was his big surprise that I was so excited about, well a bottle of thirty year matured single malt whiskey. It is really difficult buying anything on my own now as I always need someone with me so I got this off the Internet direct from the distillery. I was so excited I presented him with it at breakfast. He was delighted but deemed 0730 just a little too early for a tasting.

Last night we were sat in the garden at midnight watching the fabulous display of meteors as the Perseids pass overhead. Luckily we had clear skies for once and we loved every minute of the twenty minutes we stayed to watch. However I was tired from a long day and gave up after that, Peter didn't want to sit out on his own so came in too.

Although shattered I had a very disturbed night and I've no idea why. I should have gone off like a baby but instead I just lay there staring at the ceiling and wondering why I was suddenly so awake. After a couple of trips to the loo I finally managed to slip into a doze, only to be woken up early by Andrew's alarm clock.

Breakfast was a cup of tea as I'm saving myself for our special lunch out . We were going to go out in the evening but as we are both working tomorrow decided it was too much of a risk and having to rush home, so I got enough sleep, would just ruin things. With lunch we can still enjoy ourselves and indulge without worrying about overdoing it as we have plenty of time to recover.

Andrew came on a flying visit yesterday, as he had a day off, and excitedly told us about all the jobs he'd had to do. Sadly his cardiac arrest didn't make it and die shortly after arriving at hospital but Andrew got special praise for keeping him going as long as he did. We are not going to see a lot of him over the next fortnight as he has lots of shifts lined up. Then he's back for ten days before uni starts up again and we'll be required to act as removal men and get him shifted from the room he's in now to the house he's renting with his mates for year two. We are fervently hoping it will be the last move we have to do this year.

I spoke to Laurence and have arranged for him to come down for lunch next Sunday, with a bit of luck Andrew will be free so all four of us can get together for a day, a rare event at the moment.

Looking back at our wedding photo's I look at two innocents who had no idea what fate had lined up for them. I'm pretty sure Peter wasn't banking on having to turn carer and seeing all out plans for retirement go down the drain. However we've stuck together through some very, very tough times and come out the other end. Sometimes I have a lot to be grateful for.

Sunday, 11 August 2013

Kicking Back With The Kitties.

Well yesterday went surprisingly quickly considering how little I did. Mostly I sat on the settee with the cats, one on my lap and one curled up against my leg, and watched some DVD's while demolishing a bag of cherries. The rest has done me the world of good though and I feel much better than of late. So I intend to continue the good work today, though I do have to iron my work uniform at some point.

Today I am going to be having a go with my new gadget though, so that will add a bit of excitement to the day. I'm making a quiche for lunch so will use it to chop the onion, slice the mushrooms and grate the cheese. Then later on I'm making up a feta cheese salad for lunch tomorrow and will be using it to grate carrot, slice cucumber, shred lettuce and dice peppers, so it is going to get a good test. I'll report back on that on Tuesday.

As I've said before Tuesday is our thirtieth wedding anniversary so we've both taken the day off to spend together. The only thing we've planned is a long leisurely pub lunch and a kick back with a glass of wine and a good film in the evening. We are both back in work the next day so can't go overboard and have the whole bottle. If the weather is nice we'll go out and about with our camera's, if it's bad we'll kick back in front of the TV or, if in the mood, play a board game. Though to be honest I think after a heavy lunch we'll probably end up snoozing on the sofa like a couple of old pensioners.

Arrrggghhh! If only I was well, then we'd have taken a week off and gone to Rome but I'm grounded so this is the best we can manage for now.

Peter's present arrived safe and sound and is now hiding in Andrew's room, I'm so excited as I know he is going to love it to bits. All I've got to do now is try and find a time when he's out so I can wrap the thing.

Once again I am typing this under extremely difficult circumstances. Smirnoff has decided that the only place to sleep this morning is my desk, again. I've tried turfing him off but his paws seem to be spring loaded and he's back before he even touches the ground. After a lot of experimentation he finally found a way to fit on but he looks far from comfortable. Silly cat!

I had the misfortune to watch the new puppet show thing on the BBC last night. I can't recall the name but that's probably because it was so awful I didn't feel the need to remember it. What a waste of the ten minutes I stuck with it. There seemed to be a lot of noise, colour that hurt your eyes and not a lot else. I know I sound old but I really long for programmes like The Morecombe and Wise Show, the Generation Game or Only Fools and Horses. All made me rock with laughter and there was never any coarseness to it. Now it seems it's only funny when you swear or violence is involved. So sad.

I got a text from Andrew who seems to be enjoying his current placement. So far the highlights seem to be canulating a patient in the back of a moving ambulance and getting it in first time. Dealing with a woman cover head to foot in vomit, not all of it hers, and he's finally dealt with his first heart attack victim and had to do chest compressions. Now all that may not sound that exciting to you but when you've got a list of things you have to get signed off to pass the year they are very important mile stones. Well two of them are, I don't suppose he has to get dealing with women covered in vomit signed off as an essential part of training.

I'm so pleased for him as getting a heart attack patient is much rarer that you might think and it was one of the absolute musts as he could get loads of things signed off at once. Otherwise it is piecemeal and you can't guarantee getting all the elements you need to pass. No doubt I'll be getting the whole story blow by blow when I see him briefly on Wednesday.

No news from Laurence but then I usually only hear from him on Sundays so I'm expecting a call this evening. He has a couple of weeks off now and I'm hoping we can get together and have a meal or something, hopefully next weekend when both Peter and I are off.

Well that's it for now. I'll report back on my gadget and finally tell you what Peter's present is on Tuesday.

Saturday, 10 August 2013

Rest Days

I am really looking forward to the next two days. Not because I have anything planned but precisely because I don't. I'm going to spend two glorious days doing absolutely nothing, well apart from make meals and watch TV. Although I'm feeling well at the moment I've learned the hard way not to push things, which I've sort of been doing these last two weeks with one thing or another. So some good food, I've lots of fruit and veg lined up for snacking, and a good rest will hopefully set things back to rights. I've been feeling unusually tired these last few days so I've had the warning signs and for once have listened. How good am I?

Yesterday was, I hope, my last busy day for quite some time.

In the morning I went to the warfarin clinic, which mercifully, was rather empty. While waiting I was approached by a very elderly gent who wanted help with his phone. His son had insisted he have a phone after a fall but had given him a top of the range smart phone and the poor bloke couldn't work the thing. I went straight back into teacher mode and showed him the very basics, how to make a call, how to answer a call etc. I even set his son and daughter up on speed dial so if he fell again he could just press one button to get them.  He was ever so pleased and it passed the time nicely. I left feeling that I'd done my good deed for the day.

Then it was home for a quick lunch before heading out on the Tesco/Costco run. Having not shopped for two weeks and with two teenagers in the house, Svet was staying with us, my cupboards, fridge and freezer needed some serious stocking up.

Whilst shopping I wanted to pick up some coleslaw and salads for my lunches next week. As I perused the shelves I suddenly realised how expensive they were and, too be honest they are usually quite tasteless and soft. I like my salads crunchy and fresh tasting so decided to give making my own a go. I bought the ingredients and was pleased to find they cost a fraction of the ready made stuff. However I hit a problem, as with most PHer's cooking or preparing food can be a trial, and I knew that I'd probably give up on making my own as I'd be too tired or I'd cut too many fingers chopping everything.

As I mulled over what to do with all the stuff I'd bough a solution presented itself. I saw a small multi chopper and thought why not. I can get everything chopped, sliced, diced and grated in double quick time and without risk to any fingers. So call me foolish, call me impulsive but I bought it there and then. I'm now itching to use the thing but if I want a crunchy salad for lunch on Monday, the earliest I can prepared it is Sunday evening. Though I'm planning a trial run this afternoon so I can have salad with my lunch.

Cupboards re-stocked and new machine in the dishwasher I sank gratefully onto the settee for the rest of the evening while indulging in a cheecky little glass of Aspall's Suffolk Cyder. I adore the stuff and it was on special offer so treated myself.

After a deep long sleep I treated myself to a soak in the bath with a jasmine bath bomb and am now catching up with all my correspondence for the last two weeks. This afternoon I've lined up two of my favourite films. Bram Stokers Dracula and Some Like It Hot. A bit of light and shade there, a nice little balance.

I've also been going through the photo's I took last weekend. Some are good, some are brilliant and some are crap but hey, I had a good time taking them so every one is precious. I've included a few on here. They are from the Abergwesyn Pass, one of my favourite routes home. It is not a road for the faint hearted and in the wet on freshly gritted roads it is even trickier but well worth it. Unfortunately it was tipping down when we drove through it but the views were still spectacular, on a sunny day they are breath taking. All these pictures and more can be seen on my Flickr photo site. Link is in the righ hand column of this blog.

In the news, well not a lot of interest really. I was intrigued by reports coming out of Italy that they think they have found the model for the Mona Lisa. Really? How can they possible tell after all this time? OK, I know they managed to ID Richard III but he did have a very pronounced physical deformity to go on and they knew roughly where to look. With the Mona Lisa I think it will be mostly guess work but I'm still intrigued to see what they come up with.

Right being head butted by the cat. Either he's hungry or he's bought a present. I'd better go and check. More tomorrow.

Friday, 9 August 2013

Fantasy, Fiction and Facts

There's been a bit of an upset with organ donation recently and the reason is an ill advised episode of Holby City shown on 30th July.

I haven't mentioned it before for several reasons. I wasn't really sure how I felt about it. I had my mind on so many other things, and off course I went away that weekend. So now that things have calmed down I decided to give my take on the programme and, hopefully, dispel some of the myths surrounding transplant.

Now let me stay from the start I love Holby, and Casualty for that matter, and one duff episode is not going to stop me watching it. However I watch it fully aware that it is not real, things do not happen as quickly or dramatically or as easily as it does in Holby. One episode comes to mind when they showed a woman, supposedly hours after her heart transplant, sitting up in bed drinking tea, holding a perfectly lucid conversation without at tube or wire or machine anywhere in sight.  It made me laugh at the ridiculousness of it but I wasn't offended. I know it's not real.

However there are people in this world who think everything they see on TV or read in the papers is God's honest truth. And this is where the problems with inaccurate drama lie. Now Holby has experts who advise on story lines, however advise is all they can do. They cannot force the writers to portray that advice accurately and indeed I believe most of the reality surrounding transplant is too boring and not dramatic enough for a prime time soap. After all don't we have documentaries to give people the truth, nothing wrong in adding a little spice to the mix. Which again is perfectly true until it starts to hurt people.

The episode showed a young women waiting for a transplant and by chance an exact match is involved in a road accident who just happens to be an organ donor. The donor's mum is desperate to carry out her daughter's wishes but can't bring herself to do it so she asks to see the recipient before making up her mind. There is resistance form the staff, quite rightly so, but eventually she is allow to meet the mother of the recipient. Then she is seen bursting into the theatre where her daughter is about to have her heart removed and says the operation must stop. The surgeon then lies by saying the operation was past the point of no return. The mum is then seen watching the operation on the recipient. Irresponsible is one word I would call this episode, I have called it many other names over the course of the week, most not printable here.

Unfortunately many have believed what they have seen and are pulling their names off the donor list. I'm sure that was not the intention of the writers or production staff but sometimes you really do have to aim your target very, very low. They assumed everyone watching takes what they see with a bit of salt, they were badly mistaken.

So that is the fantasy and fiction, what are the facts?

Fact 1. A donor and recipient are rarely in the same hospital. The reason being that most transplant hospitals are specialist hospitals which do not have accident and emergency departments. Most of their patients are referred there from other hospitals not wheeled in on a trolley covered in grit, tar and petrol.

Fact 2. Medical teams looking after the donor and the recipient are kept completely separate at all times. They are frequently from different hospitals in different counties or even countries. They are connected via a transplant coordinator who has no association with either team and is usually completely independent and part of the national transplant registry.

Fact 3. Donor families have the perfect right, at the moment anyway, to withdraw consent at anytime.

Fact 4. Donor and recipient families are kept apart and contact is usually only made via writing and then anonymously. This is usually in the form of a letter of thanks from the recipient to the donor family once they have recovered.

Fact 5. You cannot just run into an operating theatre in any hospital. Theatres, ICU's and CCU's are all guarded by password locks and usually a fearsome receptionist. Honestly people you'd have more chance of getting into Fort Knox than getting past that woman unnoticed.

Fact 6. Any surgeon who went ahead with any operation without consent is going to loose their job at best and probably will go to jail. One thing is for certain, they'd never work as a doctor again. The doctor's I know would never risk their careers in this way, they mean too much to them.

So there you have it, of course stating the facts is not going to convince everyone but if only one person reads this and changes their minds then I'll be happy.

I don't feel it is appropriate to continue my holiday report here so will leave it for another day when I don't have much to say, like that's ever going to happen.

In other news it looks as though Edinburgh zoo has a pregnant Panda. How exciting, I wonder whether it will get as much coverage as the royal baby did. It should being a much rarer birth.

Thursday, 8 August 2013

Aberystwyth in August, Part Two

We started our first full day in Aber by going up to the Nant y Moch dam or as it now known the Hydroelectric system ( it still looks like a dam to me). It was a stunning day and Peter and I spent a wonderful couple of hours taking pictures, driving around the reservoir on the narrow roads or just sitting and looking.

We then went into town and, although there were more people than there were on Friday afternoon, we found the place quite empty. There was a farmers market on and I'm a sucker for those sort of things so we went up to the castle to have a look. It was quite disappointing to find it consisted of two stalls, one selling sweets and the other a few plants and some jars of home made chutney and jam. I bought a couple of jars of chutney and made the fatal mistake of mentioning the weather. NEVER, EVER mention the weather to a Welsh farmer, you are just asking for trouble, and I got it.

'Hot! Hot! You call this hot! You should have been with me in Egypt!'

Twenty minutes later and still reeling from a vivid description of heat stroke, complete with re-enactment of a seizure, yes he did actually start shaking, we managed to get away, vowing that next time we'll keep any conversation strictly on the chutney. Once I tried the chutney though I decided it was twenty minutes well spent as it was absolutely scrummy.

We decided to try out a new pub/restaurant called The Starling Cloud for lunch on the recommendation of my mother. We sat outside in the fresh air and tucked in to the most wonderful food. I even indulged in a naughty glass of cider.

The afternoon was spent on the prom watching kids searching for crabs in the rock pools or trying to fly kites and I remembered many a happy day doing exactly the same thing. I was itching to go for a paddle but knew I'd never make it down to the sea's edge and back so had to be content with remembering what it was like to stroll in the surf. Maybe next year. Ice cream was eaten. I couldn't decide between mint choc chip or rum and raisin so had both, which was an interesting combination.

A quick trip back to mum's to do my meds and have yet more tea and cake and then we took mum out for a meal. we wanted to go back to the Starling as we'd liked it so much but it was packed out so we went to Llety Parc instead which used to be the place to go but has let it standards drop a bit. I wanted something light so plumped for a quiche with salad. It was OK but I must say I've never had a salad quite like it. On the plate was half a lettuce, most of a sliced cucumber and two large tomatoes. If it had stopped there it would have been great but it didn't. In addition there was a huge dollop of coleslaw and another of spiced couscous. Now comes the weird bit. On top of all that were two slices of pineapple and four strawberries, the whole pile was topped off with a hard boiled egg. I can't say it was all that nice and Peter hated his lasagne which was very dry. Not exactly a success though mum seemed to enjoy her meal.

We fell in to bed exhausted and slept really well, which is just as well as Sunday would bring a very long, very wet and very frustrating drive home.

For Anne

I did not know you
Our lives never touched
'Til the day they gathered
To bid you farewell
And they painted your picture
And as I looked around
I felt I saw you
In the words and the sound

Brian May

I heard this song on the day I heard that Anne had passed away. 

I attended her funeral today and heard it again on the way home. Although not entirely accurate as I did, briefly, know Anne, it is a beautiful song and I thought appropriate for a such a beautiful, brave lady.

For you Anne. I will always think of you when I hear it.

For those who do not know it here is the link.

Wednesday, 7 August 2013

Aberystwyth In August, Part One.

Gosh I'm so happy I've finished my three days in work. I was so tired after my trip to Wales but it was much more than worth it. So how did the trip go?

We set out around nine and decided to maximise our time in Aberystwyth by taking the motorways, and hopefully getting there fast, so it was M1, M6 and then M54. We then swapped to the A483, A70 and A44 where everything slowed to a crawl. We didn't see a caravan until we hit the Welcome To Wales sign and then there were millions of them.

As it was approaching midday and we were getting hungry we decided to cut our losses and stopped at a charming country pub for lunch. For the life of me though I cannot remember the name of the blasted place. Anyway we went in expecting the usual pub fare but were faced with what was essentially a Chinese restaurant. Sweet and sour chicken, egg fried rice, beef curry and bean sprouts were gratefully received and then devoured as though we hadn't eaten for weeks. Well fed and much more relaxed we completed out journey with the windows wound down so we could breathe in the fresh air.

We arrived at two and my mum almost burst into tears when she saw me. I had warned her about my weight loss but it clearly was worse than she thought. Having calmed her down and with our bags settled upstairs we were treated to tea and cake while having a good natter.

Then we were off down town for a quick look around to see what had changed since my last visit. I was dismayed to see so many shops closed down and astonished that at the height of the holiday season there were so few people about. Aberystwyth used to heave with tourists throughout the summer but not now it seems. Thinking it was probably because it was getting late in the afternoon and with the shops all around us shutting up, we returned to mum's and more cake and tea.

After another good gossip and with my drugs done we headed into town again for two of my favourite things. A stroll along the prom at sunset, well Peter strolled and I pottered along on my trike, not quite the same but it will do until I can get back on my feet. Once the sun had set we grabbed two bags of chips covered in curry sauce and two cans of Vimto from the nearest chippy, Aberystwyth has quite a few of these, and settled on a bench on the prom to talk and listen to the sea.

Amazingly I polished off everything and even ran my finger around the inside of the plastic box to get the last of the curry sauce. Don't ask me why this little ritual is so special, it just is. Then it was back to mum's to watch the news and have an early night. We slept like babies and woke around seven to the sound of seagull calling. Fan-bloody-tastic!!

Enjoy the pictures, I will continue this story on Friday. Right now I have to get myself ready for a very sad day. I will be attending Anne's funeral tomorrow along with several other from the PH forums. It's going to be a very tough day.