Sunday, 27 July 2014

Something To Get Excited About

Yes I am, I really am.

I have booked our room for our mini break in York and September. After much ringing around and a few weird experiences I'd narrowed things down to the Marriot, Novotel and Holiday Inn. In the end I chose the Holiday Inn simply because they couldn't do enough for me.

The holiday me.
I explained my health situation to the receptionist and she set about solving every little problem I brought up. I will have a reserved disabled parking space right next to the door. I have an wheelchair accessible room with a space to park and charge my motability scooter, not really necessary with my type of scooter but I went along with it. The room has an en suite walk in shower/wet room and, most important of all, a fridge. To be fair I could have had a normal room, as I had last year, but they only supply fridges in accessible rooms so I really had no choice as I do not want to be spending a precious hour of every day making up meds.

So what did they charge me for all these extras? Well nothing. I paid the standard room rate with breakfast which came in as just under £300 for three nights, which is pretty reasonable. Also if I have to cancel because I get my transplant they will refund me the full amount unless it is within a week of my stay when they will take a small booking fee. Again, perfectly reasonable. So I am one happy bunny.

So if anyone else disabled fancies a trip to York anytime soon these are the hotels I rang an the responses I got.

Mercure - This sounded like a good deal initially. The hotel normally charges for parking but not if you have a blue badge. It has limited disabled facilities. However this was a no go for me as the rooms did not have a fridge but 'I could leave my medication in the bar fridge behind reception.'  No way, so that was out.

Novotel - Again sounded good on paper, it had everything I required fridge, lift, parking but the accessible rooms were not available for the dates I wanted to stay.

Marriot -  Sounded good but no fridges in the rooms. They said they could arrange one for me but were unclear if this would mean an extra charge. Again free parking for blue badges.

Royal York - Possibly the worst of the lot. The bloke I spoke to was so heavily accented, not an English accent, that he was practically unintelligible. He seemed to be fixated on getting me to book and kept giving me the hard sell. In the end he said he couldn't give me any information until I'd booked. I decided to give up on that one.

Hilton - Oh my goodness, expected more form this considering the name. I was told quite curtly that the charge for parking was £18 per day but as I had a blue badge this would reduce to £5 per day. Or I could use one of the free bays outside the hotel. Not wanting to risk parking my car in a strange location over night we scratched that one before asking anything else.

Hotel 53 -  Parking here was £10 a night or I could use the free council car park across the road but that was locked at eight every night. Pity really as it looked really good.

Best Western - Well the least said the better. The receptionist really didn't want me to book and didn't seem at interested in answering my questions. I've stayed at a Best Western before and was surprised because my last stay was brilliant. Of course I was able bodied then so maybe that's the difference.

There are many more hotels of course but I had to narrow it down, which I did by going for hotels which I'd heard of. Clearly sometimes they only rely on their name and not their service. Still I'm all booked now and really looking forward to it. I'm now looking at what we can do there and what attractions are wheelchair friendly. Time to start counting the weeks off. Six weeks and counting.

My delivery from H@H finally arrived at 1340 yesterday afternoon. I could moan but to be honest I'm just glad I've got everything. They did listen to my pleas to overstock on the drug and delivered a full two months worth. So it seems things might be looking up, however it could just be a one off and next month will be horrendous.

It is so much cooler today, thank goodness. As I result my breathing as eased and I'm feeling more like me. Long may it continue.

Right I'd better get lunch. More on Friday.

Saturday, 26 July 2014

When September Comes

Well after yesterday's little problem with my delivery, sigh, I had a call and a delivery was scheduled for sometime after four yesterday afternoon. This suited us fine as it meant I could got out and do the weekly shop without worrying.

We returned home ten minutes before four and unpacked and made a cuppa and then settled down to watch some of the games whilst waiting. Four came and went as did five, six, seven, eight and nine. At quarter to ten we got a call from a very apologetic delivery driver. His van had broken down and he was still at least two hours away so could he deliver between midnight and one. Absolutely not said Peter. Delivery driver sounded very relieved when I said that it was too late and happily arranged to deliver today. 'You'll have it before lunch time' he promised. Well everyone has a different perception of 'lunch time' and mine is around half past twelve, however I am going to give him the benefit of the doubt and wait until two before firing off another email. I think that is more than fair.

So I went to bed frustrated once again and praying that I get the call soon so I don't have to deal with this situation anymore. Yes I know it is a ridiculous reason to want a transplant but this is seriously getting to me now.

To distract myself I'm researching hotels for our break in September.

We always spend a few days away in September just to get away from work, family and hospitals. Of course we can't get away from my health problems but we do our best to put them aside and enjoy ourselves. Yes I'm still tied to the phone but that is a small price to pay for relative freedom.

The hotel has to have few specifics. It must have disabled parking, it must have a lift or rooms on the ground floor. Last year, despite asking for a ground floor room, I was put on the first floor and the stairs nearly killed me. It also has to have a fridge, this is even more important now that I'll be taking ready made meds with me instead of making them up as I need them. And finally it needs aircon. I've found the Veveltri is even more difficult to cope with, as far as raised body temperature, than Flolan. I no longer have flushes, I'm permanently hot and night time can be difficult if I don't have good air flow.

This year we are looking at a visit to York. This is one place I have been before but it was pre children so I can't remember much. I also remember that we only stopped for a day whilst on our way somewhere else so didn't get to see or do much.

So far the hotels are a very mixed bunch. Some have no disabled facilities at all, which I think is a bit dubious, some do but you have to pay a premium for them, which I think is very unfair, and one tried to charge me £18 a day for a guaranteed disabled parking space. So far I've got a choice of three possibles but they are all quite a way out of the city but if having to drive in everyday means a good stay then that's what it will have to be.

Today is going to be a hot one but mercifully it will start to cool down tomorrow. Apparently it is going to be short hiatus but for me a much welcomed one. I know I sound like a spoil sport but if you were in my position you'd be moaning too.

To help me cope this afternoon I'm going to sit out on the decking in the shade with a good book and my music player and just cut myself off for a couple of hours. I have nothing else to do, I did all the chores yesterday, except the ironing, which I did early this morning while it was still cool. I think this is going to be my new routine even in the winter as it means I have almost two whole days of 'me' time.

Right better get on with booking my break. Once it's done I will have something else to look forward to. It is really important to have goals, it takes my mind off everything else I have to deal with, well for a few minutes at least. More tomorrow.

Friday, 25 July 2014

Summer Madness

Well it has been another of those 'rushed off you feet' weeks and I have struggled.

Once again the aircon appears not to be working properly and despite having at least two fans pointed at me I came close to passing out at least once. The rest of the time I felt over heated, sick and dizzy but I made it. However this is not going to happen again. It feels terrible to leave my lovely colleagues in the lurch when we are so busy but I have to look after myself. It's my own fault, I was told to go home on several occasions by several different people but just couldn't do it. Next week I will without hesitation.

OK, not a mini but the closest thing I have.
Of course the hot weather and the end of school  is the main cause of the increase in calls at the moment.

Most of these calls are for the dreaded 'mini motorbikes'. I don't know what possesses parents to buy these things. Apart from not being designed to be ridden in parks full of toddlers, or down pavements, or the wrong way up one way streets, these things are actually a danger to the riders. They never seem to wear helmets and are totally devoid of any road craft or common sense. These things should be ridden around specially designated tracks, not on public streets but the message really isn't getting through. One day, in the not too distant future, someone will be killed riding, or by someone riding, one of these things and then hopefully they will be banned. Until then call centers around the country will be plagued by calls from angry, innocent passers by who have just had a near miss. If your child owns one of these bikes please make sure they are using it sensibly and responsibly or they could have the thing taken away and destroyed.

Can I just give a little more advice.

It is not illegal for your neighbour to do any of the following.

Have a bonfire,
Have a barbecue.
Let their kids play joyfully (and noisily) in the back garden.
Mow the law when you are having a lie in.
Have a party.
Drink alcohol.
Have a dog that, surprisingly, barks at you when you look over the fence.

Also we do not provide lifts home if you have

Lost your bus pass
Lost your ticket
Spent all you money
Your bike has a puncture
Can't find a bus stop
Have been thrown off the bus for having drunk too much.

OK, rant over and breathe, well almost.

Yes it is delivery day for H@H and so the day for writing another one of these.


Thank you for my delivery today which arrived on time and was mostly correct.

However the one item I was so desperate for, that I’ve already had to go out and buy because it wasn’t delivered last month, was missing.

I rang your service and after being accused of not looking in the box properly was then informed that you were actually out of stock. How the hell can you be out of stock of water? You knew ten days ago that I was in desperate need of Normasol, because I emphasised that to the call handler taking my stock levels, so my expectation was that you’d make sure it was delivered this time. Instead I’m wasting my valuable time on the phone and at the computer writing emails yet again.

I have passed both my home number and my mobile number, because I refuse to waste my day waiting for a call back that probably won’t come, and expect a delivery to be arrange either later today or first thing tomorrow. If I do not get my delivery I will order my Normasol from my local chemist, who is fully aware of what is going on, and they will forward the bill to you.

I look forward, with no great hope, of hearing from your company soon.'

I think I'm beginning to lose the will to live when dealing with H@H. I still haven't heard when I will be swapping to the new company but it can't come quick enough for my liking. Still I do have my drug, which is the important thing, and I know I can buy the missing Normasol if I really need to. So I suppose in the great scheme of things this month hadn't been too bad but really there shouldn't be any mistakes at all.

So, now I've got all that off my chest what is planned for the weekend?

Well today is chore day so, shopping, laundry etc. Thankfully it is so much cooler here today. We are promised high temperatures and thunderstorms for this afternoon so I'm greeting this small respite from the heat with glee. If temperatures soar again this weekend, as has been promised, then my time will be mostly spent in a darkened room watching the Commonwealth Games.

As with the Olympics I'm not that bothered about them at the moment. They are more of an irritant because I never know when my favourite soaps are on. Petty I know, but watching them is how I relax after a fraught day so they are important to me. However I'm sure, just like the Olympics, I will be hooked soon, especially as I can cheer Wales on as a separate country.

This week marked the passing of nineteen months waiting on the transplant list. I was pretty down on the day, for a couple of days actually. I never imagined I'd be waiting this long, let alone be pushing at the door of two years.

When they said I'd have a long wait I though maybe ten months, a year at most, and certainly the doctors seemed optimistic that I'd be done within the year. However that wasn't to be and now I'm looking, once again, at a long wait. To me that false alarm in May feels as though it has set the clock back to zero and I'm going to have to wait for another seventeen months before another call comes. I know my donor pool has been expanded but that is still no guarantee that anything will happen anytime soon. It's all very frustrating and very disheartening as I watch another summer slip by where I've had to sit an watch everyone else have fun in the sun.

In a world of extraordinary coincidences the most amazing thing happened to me this week.

Ages and ages ago I used to belong to a local Am Dram company. I originally volunteered for hair and make up and back scene stuff but somehow got talked into acting in one of their plays. I played Lydia, a posh woman who was cheating on her husband. Unbeknownst to me my lover was also having an affair with my husband and the two plotted to kill me off so they could be together. At the same time I'd plotted with my lover to bump my husband off for much the same reasons. The plan was for my lover to burst into the house, whilst pretending to be a burglar, shoot my husband and we would then live happily every after on my husbands money. In the end I got shot and they did the happy ever after bit.

Well last week I found out I'd been working next to my lover/murderer for the past four years. We only realised when he mentioned he was doing a play for this company and I told him that's I'd once acted for them. How extraordinary is that! I have some pictures somewhere and when I find them I will post them.

Well enough of that, time to strip the beds and do the ironing while it's still cool and before I turn back into a panting, sweating, dizzy mess. More tomorrow.

Sunday, 20 July 2014

Trying To Keep Positive

This morning I did something I swore I'd never do. I complained loudly and bitterly about having to spend an hour of my time making up this week's meds. How times have changed and how quickly we forget. I could never go back to making it up every night or changing it twice a day that's for sure. To be honest I am getting quicker at it every week. I've worked out which angle to hold the bottles to ensure I get every last little bit. I've worked out how to arrange the things I need on to the sterilised sheet so than none roll off when I pick something out of the pile and I've worked out a routine which is so efficient it is just like a factory line. I'm down to one cassette every 6 minutes now. Just like everything else it is all in the planning.

Yesterday I still suffered. It wasn't as hot, so I wasn't as bad but I still found it tough going. The problem is that once something upsets you equilibrium it takes a few days to settle again. So far today has been lovely and, relatively, cool and I'm beginning to feel a lot better. Unfortunately there is still a lot of humidity so that isn't helping. I did manage to eat more yesterday and I kept up my liquid intake. However this increase in drinking is also causing problems and so yesterday I gave in and took an extra diuretic. The effect and relief were simultaneous and almost immediate. In less than an hour I went from looking nine months pregnant to three months pregnant and my breathing improved significantly. I am going to take an extra tablet again today in the hope I stop piling more water on and going back to square one.

Last night I spent a very pleasant evening watching the concert at Edinburgh Castle. I was particularly anxious to see Culture Club and Paloma Faith.

The concert kicked off with the Kaiser Chefs, which was OK but really not my type of music and when they were followed by Jessie J and Rizzle Kicks I busied myself in the kitchen making drinks and snacks. Then Bill Bailey arrived and things began to look up. However I was deeply disappointed with the acts I so longed to see. Paloma Faith mumbled so much I had no idea what it was she was singing. The two from the Happy Mondays gave a brief and welcomed relief with one of my favourite songs and then it was back to the dross with an American group I'd never heard of. I was beginning to get the idea that there were very few Scots involved in this concert. Even the present was Welsh, surely they could have found someone a bit closer to home.

Culture Club lacked something, I don't know what but something. They'd messed with the arrangement of 'do you really want to hurt me' and I was disappointed. Then they wheeled out Ronnie Corbett for no apparent reason other than he had a vague Scottish connection. Poor bloke he really didn't look as though he knew where he was half the time and the only funny thing he did was step on Alex Jones' dress.

The we reached the headline act, Smokey Robinson. Now in his time he was a great singer and I have no doubt he has enormous talent. At first I didn't recognise him, he's had so much work done his face appeared frozen in an awful rictus grin. Sadly nothing could be done with the aging vocals and, although his songs were recognisable, they lack the power and in some areas, the tuning of his earlier efforts. Why is it that, once great, singers insist on humiliating themselves in front of millions when they become pensioners? Paul McCarthy's done it, Mick Jagger continues to do it, as does Madonna and Debbie Harry.

Now don't get me wrong, it is nice to see these blasts from the past on occasion but it really should be checked on whether they really are still up to the job. Aging of the vocal chords is a natural process, as is the loss of ability to hear a wide rang of notes. Unfortunately science has yet to be able to turn the clock back in these areas, and so performers are rarely able to sing the songs that made them famous quite so vigorously or so accurately. Sometimes it's best just to stand and wave and keep your mouth shut. Seriously guys there comes a time when you just have to stop.

So it was a late visit to bed but being so tired I slept like a baby and feel so much better for it.

Today has been designated my 'do nothing' day. I'm putting on a film this afternoon and have chosen 'Space Cowboys' to pay tribute to James Garner who died earlier today. He plays an aging priest and is possibly the funniest character in the film.

Talking of paying tribute. My thoughts and prayers go out to the innocents of flight MH17.

So tomorrow I'm back to work. It is not going to be a great day for me. Apart from being a Monday, and we all know what those feel like, tomorrow marks nineteen months on the transplant list. Currently in the UK there are sixteen people waiting for a heart and bilateral lung transplant and I don't rate my chances much. However I'm told by the well meaning that I must stay positive. Well I'll try but it is going to be a hard old slog tomorrow.

Next blog Friday.

Saturday, 19 July 2014

The Right To Die Debate

Oh. My. God!

I really do not know how I managed to survive yesterday. I couldn't breath, I couldn't get comfortable, I couldn't eat and my stomach and ankles were like balloons due to all the water I was drinking (and retaining). I did think about taking an extra furosomide  but that would have made me even more thirsty and probably compounded the problem. In the end I sat on the step of the patio, I couldn't make it up to the decking and panted like a dog after a long run.

Around six it began to cool so I took the opportunity of having a long tepid shower and emerged feeling so much better. After watching the Masterchef final it was time for bed and yet another restless night due to the heat. Now I usually sleep in a light cotton top, as I am terrified of getting my hands tangled in my line and pulling it, but even that had to go. It must have worked though because I woke up this morning around eight under the covers and perfectly refreshed.

I know it sounds weird but I was so pleased to hear the rain thundering down outside. The room was cool and for the first time in days I wasn't pouring with sweat. I took another quick tepid shower and after reading the paper and having a much needed cuppa set about sorting out some suitable clothing for today. I've decided on a crop top and a light long skirt but have also got a light summer dress on standby should this afternoon be a repeat of yesterday. I know I say I can't wear dresses with my pump but my strappy ones allow me to thread the pump and line through the armhole. These are dresses I'd never wear outside though due to them displaying my line entry site.

During my enforced stay in front of the fans yesterday I watched a lot of news and was particularly caught by the current debate on 'assisted dying'.

This is one of those subjects that evoke very strong emotions on both sides of the argument. I have yet to decide which side I fall on but here is what I am currently thinking.

The pro argument is that everyone has a right to do what they wish with their own body. Now while this is very true there has to be some consideration for those who, while not owning your body, have a vested interest in it. Relatives are devastated when someone takes their own life in a suicide. They feel guilty that there was something they didn't or did do to provoke the individual. There will also be anger and shock and of course an intensified grief. Suicide is never dignified, it is usually messy and violent. Even those choosing the (relatively) easy way of an overdose can have a terrible death. Also spare a thought for the poor person who finds the body. Quite often it will be a relative, a small son or daughter, they will have to live with that image for the rest of their lives. Suicide is not brave or romantic it is cowardly and selfish.

Assisted Dying is basically suicide with someones agreement and help. Currently in this country the help comes from a close relative and once the deed is done that relative risks a murder charge and a long prison sentence. True this is rarely the case but they rarely get off scot free and can be ostracised by both family and friends for their compassion.

The pro lobby argue that human beings are treated worse than animals when it comes to ill health and dying. In some ways I agree. The thought of constant un-endurable pain fills me with fear and I am pretty sure in those circumstances I'd do anything to stop it. However if I am in that much pain can I also be of sound mind and capable of making important decisions? I think not.  How can anyone in such circumstances make a cool calm decision, it just doesn't happen. This is going to have to be a decision that a person makes before they get to that stage. Yes I know we already have 'do not resuscitate' directives in hospital but that is an entirely different thing for entirely different circumstances. Otherwise what is to stop a scheming relative or friend from withholding pain relief in order to force the suffers hand?

A bit stormy today
There are a lot of objections to assisted dying, some are on religious grounds, some are on moral grounds and some are from those the proposed bill is designed to help.

I am terminally ill. One day I will become extremely ill and die. That is a fact and cannot be helped. I hope my death will be quick and painless but I can't guarantee it, nor can anyone else. Would I be willing to sign a form to allow a doctor to end my life? I don't know. How can another human being decide when another has had enough of pain, of life? Of course ending my life has crossed my mind, especially during my very darkest days when I am so ill I can't move. However there is always that hope that things will improve and, thank goodness, up to now they always have. If I'd have said 'OK, I've had enough now, let's do it', I would have missed out on so much fun and happiness.

There is one more thing to consider about this bill. If it goes ahead it will only apply to those who have six weeks or less to live. This, supposedly, is to stop greedy relatives knocking off their slightly dotty grand mother's in order to get an early inheritance. Fair enough but what about the people trapped in agony in bodies that no longer work following strokes, road accidents, illness? What about them? In going for the six week option ministers are only considering the physical agony of pain. What about the mental anguish of being stuck in a body unable to move? Or those who are in constant pain from an illness that won't kill them? Because their life is indeterminable their agony will continue and those who attempt to help will still be prosecuted.

Certainly we do need some regulation or law to prevent those who do want to endure to be forced into an option they don't want. However a six week limit is not the answer, nor is allowing doctors to effectively execute a patient on theirs feelings rather than the patient's. A lot of supposedly unconscious patients can still hear what is going on around them. Imagine the horror of listening to that sort of conversation and not being able to do anything about it!

Well there you go, you may or may not agree with anything I've said and even having written it all out I'm still on the fence on this one.

Right off to do a bit of ironing before things start to heat up. Next blog tomorrow.

Friday, 18 July 2014

Relatively Speaking

As a week it wasn't a bad one but there were a few major downs mainly at work.

I really do not know what hit us this week, it was non stop and of course because there were long queues on the phone everyone was moaning at us. The problem is the summer holidays have hit and people are taking, much deserved, time off, leaving us very short staffed. I don't resent people taking time off, I've only just returned form my two week break after all but it does mean those left behind are having to work twice as hard just to keep our heads above water. It doesn't help that we are working in an oven either as the air con seems to have gone on the blink again. Still my lovely caring colleagues made sure I had a fan near me and had plenty to drink so actually I didn't feel to bad. I just wish it hadn't been so busy.

On the plus side I had my little sister and her family staying with us for the week. I wish I could have had a day off or so to do things with her but all I could get was a half day. Now I love my sister and her family dearly but they are a bit difficult to cater for. Wendy is a vegetarian, Nick is diabetic and Charlotte is just, well fussy. Now the veggie part I could cope with quite well as we eat a lot of veggie stuff so it was just a case of cooking more of it. Thankfully none of the stuff I cook had any extra sugar added so Nick coped quite well and very little adjustment was needed. Charlotte gamely tried everything but unfortunately I appear to have missed the mark on several occasions. Still I will be better prepared for the next visit.

They arrived late on Sunday and after settling them in with tea and cake we did the usual catching up thing. Laurence was also here so he could say hello and spend some time with them. However because of the long journey they were quite tired so we spent the evening chatting and then we all had an early night.

On Monday they decided to visit Bedford and I have to say Bedford was at it's best. The weather was lovely but not too warm and they loved walking along the embankment by the river. I picked them up after work and we spent another evening just chatting, well we do have a lot of catching up to do.

Tuesday was shopping day. Peter took them up to MK and I joined them for lunch, having changed in the toilets at work, not easy when you have a pump and oxygen tank to juggle with. First up was a pig out in Pizza Hut and then we hit the shops. I don't remember the last time I had a girly shopping session and really it's not my kind of thing but I really, really enjoyed myself and actually I didn't really spend that much.

Wednesday it was off to London for them and back to work for me. They had a whale of a time visiting the London Eye and taking a river cruise while I got hot, sticky and bad tempered. In the evening they treated us to an Indian take away as a thank you, which was very much appreciated. I was so tired I went to bed early and said my goodbyes as I'd be up way before everyone else in the morning.

Thursday and they began the long journey home, one that was made more interesting by the archetypal 'nutter on the bus' who spent the whole journey swearing at himself. Nice! For me things were equally unpleasant and the combination of working at full stretch and the unbearable heat really began to take it's toll. By the time I got home I was dead on my feet. I stripped off my heavy uniform and had a cool wash before donning a light summer skirt and top.I really wish I didn't have to drag the pump around with me but I'm stuck with it.

Hot weather makes me very uncomfortable and I have a lot of difficulty breathing so Thursday night was a nightmare for me. I had both windows open and the fan going full blast as I lay on top of the duvet still feeling too hot. Eventually I did manage to drop off only to be woken in the early hours by the most impressive thunderstorm we've had this year.It was almost constant flashing and the rolls of thunder ran into each other. There was no way of going back to sleep, especially when the rain came down in torrents setting off car alarms so I just lay there trying to reassure the cat. Poor Smirnoff, he was actually trembling.

I must have dropped off eventually as I was woken by another clap of thunder around eight and down came the rain again. Now the sun has come out and it is hot, muggy and steaming and I am suffering. I can't breath and when I move I just break out in sweat. I don't know how many times I've washed today but it only offers temporary relief. So once I've finished this blog I'm taking myself off downstairs to sit in a darkened living room, hooked up to my oxygen to catch up on all the programmes I've missed this week.Sometimes enforced sofa time can be a blessing.

Next blog tomorrow.

Saturday, 12 July 2014

Putting My Feet Up

Woke up to the most wonderful day. The sun is shining and it is warm. Perfect for chilling out and relaxing after my marathon yesterday. Honestly, I feel like I hadn't stopped all day. Still the fridge is full, the house is cleaned, tidied and polished and the spare room is (almost) inhabitable. Just got to do the final touches and we are all set to go. I've even worked out a rough menu so that I don't have to stress about coming up with something every night. It's simple, quick and roughly what we eat, so mostly pasta and rice. I just hope they like it. As my sister struggles with keeping things down due to her meds, what don't I know about that situation, I've got some soups for her to try. Even if I couldn't face a full meal, I'd always manage a cup of soup.

Today is going to be a quiet affair. I have done the ironing this morning, just to get it out of the way, and I did have to clean out the fridge because the milk leaked. However this afternoon I am doing nothing. I'm going to settle back with a crafty Pimms and, if outside a good book, or inside a film. It depends on whether the promised thunderstorms put in an appearance. We are not expected to get any here until late in the afternoon but we all know how accurate the forecasts tend to be.

Of course my weekend hasn't been entirely without stress. I had to write yet another email to H@H after they failed once again to do what was promised.

'Once again I have got to write to you because you have failed to do what you promised to do.

On the 27th June we had a phone conversation where I expressed my concern that I was running out of items because of previous problems with deliveries and that I needed to build up a ‘buffer’ of certain items, particularly the Veletri. It was agreed that my delivery would be brought forward by a week to accommodate this buffer supply. It was arranged that I would be called straight after my holiday to arrange the earlier delivery. You even confirm this in an email on the same date.

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

Well guess what didn’t happen? Yes that’s right, no one called. My regular call for a stock check, which was due today 11/07/2014 also hasn’t happened. As a result of you incompetence I had to go to a local chemist today and buy my own supply of Normasol. What sort of company is it that forces their clients to have to go trawling around local chemist in order to find the items that company should be supplying?

Can I stress to you that I only have enough Veletri to last until July 25th so it is absolutely vital that I receive my delivery on that date, unfortunately for me Veletri cannot be purchased at my local chemist so I am totally reliant on you to provide it.'

Thankfully my PH specialist center is now making determined moves to drop H@H and get my drugs delivered by someone else. I've received a few emails about the change over in the last few weeks and it looks as though they are going to go with BUPA. Those who already have things delivered by BUPA say they cannot be faulted, which is very encouraging. Unfortunately the emails state that BUPA will only accept a few patients at a times as they do not want to be overwhelmed, fair enough, but this means some of us will have to put up with H@H for a few more months yet. My only fear is that once H@H realise they have lost the contract will their service to patients from my PH center deteriorate, on the other hand how would we tell?

Well it is lunch time so I'm off to make something simple and tasty and then nip outside while I can. Next blog tomorrow, if I have time, otherwise Thursday.

Friday, 11 July 2014

Back to Work!

My first week back after my holidays has passed without incident so I am very happy. I was clearly in need of a break as I found this week I was more alert, less tired and actually had a good time with my lovely colleagues.

I also got a new chair.

Because of my PH I find sitting in ordinary office chairs all day painful and exhausting. I could never adjust the back to be both supportive and comfortable. Those with head rests tended to push my head forward and with those with no headrest meant I couldn't lean back and relax when feeling tired. In short I'd often leave work with pains in my back and chest and utterly drained.  So the decision was made to give me my own personal chair.

This arrived on Thursday and I had to sit on it and allow the man who brought it to rock me backwards and forwards, up and down etc, etc until we found the perfect sitting position for me. The chair has a tall back with a slight dent where your head goes so it isn't pushed forward. If is well padded and this sort of 'grips' me around my sides and gives me much more support. In short it is a little bit like sitting in a high tech armchair. Although I've only used it twice it does seem to be making a difference.

So today and tomorrow is being spent getting the spare room ready for the arrival of my sister and brother in law on Sunday. They are down for a few days to do the touristy bit in London and are using us as a base. As with most people I know the spare room in our house has been used as a dumping ground for things we intend to 'put away properly later' but never do so. Well now we are being forced too, which is a good thing because I haven't been able to get to my sewing machine in ages and I have a stack of repairs waiting.

National transplant week has gone well and I've seen huge amounts of publicity. However there are still those who are ignorant enough to believe that signing up for the donor list means they will be allowed to die if they were ever unfortunate enough to become seriously ill. As usual people are far too willing to believe the negative over the positive. I guess there will always be those who just cannot be reached or educated.

In case anyone actually missed they hype, the Tour de France paid a little visit to England this week causing much disruption to the roads and surrounding areas. This is a bike race and as such there are bound to be falls, some worse than others, but overall inevitable. So imagine my surprise, as I was sitting in the tea room eating my lunch, when the announcer on Sky News said there was some shocking news coming in. I and my colleagues braced ourselves expecting news of a plane or train crash, earthquake or the death of someone famous. The news that was so 'shocking' is that Britain's best chance of winning had fallen off his bike and dislocated his shoulder. While he has my sympathy it is hardly the shock of the century is it!

We received good news yesterday.

After moderation it has been confirmed that Andrew has passed all the exams and essays needed for his course. All he has to do now is complete this last placement and he will officially be a qualified paramedic. He has to register, of course, which means filling out a form as long as your average toilet roll, but once that's done it's over. Big sighs of relief all around and now he can settle back and really enjoy his placement without worrying about having to fit re-sits in.

Well it's been a really busy day and I'm shattered. I've done far too much today and will need to take it easy tomorrow but as all I have to do now is vacuum and make the beds I think I can give myself the day off. More tomorrow.

Sunday, 6 July 2014

National Transplant Week

Yes it's that time of the year again. The time when people like me start banging on about people joining the organ donor register.

It may surprise a lot of readers to find that I am an organ donor myself. My heart and lungs may be of no use but there are lots of other bits that could go on to save someone else's life. You see those of us, on the transplant list, would actually never dream of taking an organ without wanting to pass something on to someone else in the event of our own deaths. Why should you accept if you are not willing to give? It doesn't make any sense does it?

However there are millions out there who have not signed up yet. Some have religious or ethical reasons which of course must be respected. The rest of you really have no excuse other than, may be, being ill informed about what it means to be an organ donor. So straight away lets explode a few myths about it.

Myth number 1: If you are an organ donor doctors will not try hard enough to save your life. This is utter nonsense. First off a doctor could be struck off for not doing everything in his power to save someone. Secondly it is far more cost effective to save you than to let you die so someone else can have your organs. In this budget driven world that actually is probably the number one reason which explodes this particular myth. I know this myth is not true because the organs I should have got were damaged during CPR on the donor.

Myth number 2: I'm too old to donate. No one is 'too old' to donate organs as it all depends on the viability and quality of the organ being donated rather than it's age.

Myth number 3: I'm on medication so cannot donate. This depends entirely on what sort of medication it is. As a general rule of thumb, if you can still give blood (if you do) then you can still donate. Again you might be limited in which organs you can donate but 'some' is better than 'none'. Check with you doctor.

Myth number 4: I don't live near a transplant center. This is one I've been told to my face, clearly people who think you have to live next to a transplant center have never heard of planes, helicopters or fast cars.

Myth number 5: I've signed the register and carry are card but I don't think it is necessary to tell my family, it will only upset them. This is probably the most damaging myth of all. Because of our crazy laws, you can sign as many registers as you want but unless you tell your family what you want it could all be for nothing. Doctors still need to ask relatives permission to take organs and they have to do so while the shock and grief of losing a loved one is still very raw. If your relatives do not know your wishes then it puts a terrible burden on them at the worst possible time. If you discuss donation with your relatives, when things are calm and happy and everyone can really think coolly about things, then it will make it so much easier for your loved ones should the time come. They will know that this is what you want and therefore are more likely to give permission.

Presently there are over 7000 people in the UK waiting for organs and the number is rising all the time. Three people die every day waiting. More than a third of all organ donors have their wishes overturned by their relatives because the first time the relatives hear about their loved ones wishes is when the doctor tells them. Naturally enough they don't or can't believe what the doctor says and refuse permission. If you truly, truly want your wishes to be carried out please talk to your loved ones, do it now, do it today. Yes is is an uncomfortable subject but it is the only way forward.

Look out for articles in magazines, newspapers and on TV and radio all this coming week. A lot of them will feature my friend Kath Graham, who was fortunate enough to have a heart and double lung transplant in Papworth last November. Now Kath spends her time raising awareness so people still waiting will also have a change of getting this special gift.

Thank you for reading this blog, and thank you for considering donation. Next blog Friday.

Saturday, 5 July 2014

My Big Fat Welsh Mini Break (Coming Home)

Before I start on my last blog about my holiday I thought I'd share an email I got yesterday. It is from my PH center.

'Dear all

The on going issues with Healthcare @ Home have reached a point where as a service we are looking to an alternative company. Details of which will be forwarded in due course, however if there are objections I would appreciate your views, as any change in home care provider could happen quite quickly.


How exciting! Looks like all the complaining has paid off. However I do hope it is not going to turn out to be a 'out of the frying pan, into the fire' situation. I guess we will just have to see.

So back to Wales.

Our last morning was spent visiting shops that, remarkably, were my favourite haunts when I still lived in Aberystwyth. I spent a fortune in Stars on clothing and stocking up in incense. I love their stuff and always call in to buy from them whenever I can. This time I got some light comfy trousers for lounging around on hot days, my joggers are far too hot in summer weather. A lovely gypsy skirt in a fabulous blue and a light hooded top, again for summer when you need something but not something as heavy as a fleece. What I find most wonderful about buying things from Stars is that they all smell wonderfully of incense which lasts until their first wash. They had some lovely long summer dresses and I could have bought at least three there and then. However the pump prevents me wearing dresses to they will have to wait until after transplant, then look out bank balance.

I was also delighted to find a new shop. This shop is a bit like Lush and smells just as good. They are cheaper than Lush so I bought some bombs to try out. If I really like I'll be bringing a box next time I visit.

After shopping we had another long lingering stroll along the prom and I felt so sad to be leaving. I wish I could stay longer or come down more often but with our separate work schedules and my dodgy health it is so difficult. Even though I had only really spent two full days I was exhausted and knew I needed to rest. Yes, I suppose I could rest in Aber but I just want to get out there and do and see all the things I miss. I have promised myself that post transplant I will spend more time in Aber walking the prom, Consitution Hill and Pendinas monument. If nothing else walking the hills will get me fit and it will be miles better than a gym.

We took Mum out for a meal and decided on a little, out of the way, place called Sosban Fach (Little Saucepan for my non Welsh friends).  This restaurant serves home cooked plain food, mostly traditional but with a curry and a sweet and sour on the menu to add interest. I had the sweet and sour chicken, Mum fish and chips and Peter the big all day breakfast. It was delicious and there was plenty of it. We were so full we had to skip pudding, which was my favourite, apple pie and custard. I was only half way through my meal when I noticed we were the youngest in the room by a clear decade. We'd decided to visit on pensioners day, all the cafes in Aber seem to have a pensioners day. This and our English accents drew some consternation and stares from other diners.

Back at Mum's we packed, loaded up the car and after a cuppa were on our way. I was sad to leave but this was tempered by my second reason for loving visiting Wales, the Abergwesyn Pass.

This ribbon of a road goes through one of the remotest and spectacular valley's in Wales. I had my camera on my knee all ready to go as sometimes the RAF make training flights through the valley and they can actually be flying below you, which is as weird as it is spectacular. Sadly no such luck this time. Our progress was slow, partly because of the sheep who get out of the way in their own sweet time and partly because we kept stopping to take pictures of the waterfalls and views. The waterfalls were not as good this year because, believe or not, Wales hasn't had that much rain, so there was not the run off from the mountains that usually follows a good downpour.

My favourite waterfall is shaped like a heart and is usually one of the prettiest but there was barely a trickle. Very disappointing. 

We also had some giggles as, not being that steady on my feet I managed to fall off a small rock covered in moss and then nearly landed in a stream after failing to see that the ground was slopping downward. These antics caused Peter to remark 'there's ungainly and then there's you', which had us in fits again.

Back in England we called on Peter's brother David, his wife Cordella and the children who were mostly out. By now it was getting late and I would have been really worried about running out of Flolan but with the new drug all I had to do was take five minutes out to change my cassette and I was done. This was the first time I'd really appreciated the new freedom the Veletri gives me and I am so glad I made the change.

We expected, at most, a cup of tea and a biscuit but we were served with a proper dinner. It was such a surprise and very gratefully received as we were both beginning to feel hungry. It was topped off with a big bowl of strawberries and ice cream. I was in heaven!

The rest of the journey was unremarkable and we arrived home gone eleven, shattered but happy. We'd seen everyone and had beautiful weather and bonus points for me for staying well the entire time. 

Now of course I can't wait to go back. Especially as next time I will walk and I will paddle but most of all I won't have to worry about phone calls. That is another freedom I just can't wait for.

Well that's the last blog about my Welsh adventure. I hope I haven't bored you all to death. I've encluded some more pictures. Enjoy!

Friday, 4 July 2014

My Big Fat Welsh Mini Break (Family Time)

I was woken around seven on Tusday morning by the screaming of seagulls and the crowing of a cockerel. A bit weird but that is Aberystwyth for you.

After a quick breakfast we headed off into town and went around the shops and of course took another turn on the prom. Then it was back to my mother's for lunch and my sister Wendy and my niece Gemma arrived. We had a good old natter and then Wendy and Gemma went into town to do some shopping and we arranged to meet up later.

The building work on the right is the shelter being rebuilt
after being damaged in the winter storms

After a leisurely lunch we met up at the bandstand and spent the afternoon walking along the prom talking and eating ice cream. It was the best day I've had for a long time. It helped that the weather was so perfect, a bit breezy, I got ice cream in my hair, but otherwise lovely. I'd remembered to bring my camera and got some lovely shots of the harbour. We walked, well the others walked, I trundled, for a good couple of hours stopping for ice cream and a drink. While sitting eating our ice cream a military helicopter flew low over the sea and barely cleared the castle. I fired off a few hopeful shots, he was moving pretty quickly, and am really pleased with what I got.

There was something that I'd noticed whilst wandering around the town and that is parking.

Parking in Aberystwyth is almost legendary, there is even a facebook page dedicated to it. I've decided that there are four types of parking going on.

From the left. My niece Gemma, my mum, Eileen and my sister Wendy.

There's the 'stuff parallel parking I'll just abandon it here'. The 'I've got the front/back end in so I'm parked.' The 'the road may have double yellows but I'm on the pavement so I'm fine.'  And possibly my all time favourite 'yes I've blocked three cars in but I'm bound to be back before they are.' I've witnessed all of these types at least once during my stay. I was a victim of the yellow line parker when encountering one on my scooter and nearly toppling into the road trying to go around him. However I've come to the conclusion that the parallel parking problems are down to old ladies who have no idea how long their car is.

Whilst waiting for Peter outside a shop that morning I'd watched  this old dear first try a space that to anyone else would see was miles too small for her. She gave it several goes before she gave up and drove along the road a little way to a space that was about twice the length of her car. Then ensued a full ten minutes of blood, sweat and tears as she went back and forth at the same angle trying to get into this enormous space. I was crying with laughter and the sweat was pouring off her but she just kept on going. Before long there was the smell of burning clutch and I was so tempted to ask if I could park it for her but I was worried about the reaction I'd get. Walking past the same spot an hour later she had joined the 'back end is in' category and had left it with the nose sticking out into the road and half a mile of clear space behind her.

Once Wendy and Gemma had left and I'd had a rest, I was enjoying myself but the pace was beginning to tell on me, we went back into town to sit on the prom and wait for the sunset. I had my camera with me and we were all ready. While waiting we indulged ourselves in one of our 'musts' of any visit to Wales. A bag of chips smothered in curry sauce accompanied by a tin of Vimto.

When we first married we didn't have the money to throw around so for us a treat was a walk along the prom eating curry ad chips and sharing a can of cider. Of course I can't drink anymore, and besides it is illegal to drink alcohol on the sea front so Vimto it was. Now, despite being fairly comfortable we still indulge in our old treat whenever we come back and it tastes better than any high priced restaurant meal.

The sunset was lovely but not as brilliant as the one the night before, I could kick myself for forgetting my camera, but I still got some brilliant shots. We stayed until the sun had disappeared completely and still sat watching the sea for a good half hour before going to bed and sleeping like a log again.

There was one moment of sadness during the day. Very briefly I remembered that if my transplant had gone ahead I could have actually been walking along the prom instead of being stuck on the scooter. It made me sad but I refused to let it spoil the day and promised myself that next year I would walk.

Unrelated to Aber but note worthy. I had an email from my PH center to tell me they were ending the contract with Healthcare at Home and that another company will be taking over very soon. Whilst delighted I can't help hoping that it is not going to be a case of frying pan and fire. We will see.

I hope you enjoy the pictures. More tomorrow.