Monday, 30 September 2013

Lazy Monday

Ahh! The joy of waking up on a Monday morning, realising you don't have to go into work and then snuggling back under the covers for a couple of hours.

It's times like this that I really question the sense of going into work. I feel so much healthier when I can get up at my own pace and do nothing but potter all day. Being a lady of leisure is really starting to appeal but deep down I know I'd soon get bored and frustrated. I'd also miss all my work buddies. That's the problem with holidays, they are a treat. If the state become permanent it starts to loose it's appeal. If I were well and rich no problem, I'd travel the world and have a whale of a time, but ill and just managing, it's a different story. So I must enjoy this little break while I can.


Yesterday I spent relaxing and trying to recover from Friday and Saturday. It was a fairly nice sunny day so I sat in the living room with the windows open, far too chilly now to be out in the garden, and read, only stopping to eat and watch the Moto GP. In the afternoon I did a little bit of housework before going back to the settee to read again.

I did have a bit of a disaster at lunch time.

We were sitting eating, I'd made pork loin chops with carrot and swede mash (my absolute favourite), peas and mashed potato and lashing of gravy. As we were chatting I wasn't looking at what I was doing and attempted to cut into my chop. I don't know how I managed it but I skidded my knife across the plate towards me and with it came the gravy. It was all over me. I even got gravy on the little bag I use at home to carry my pump around in. Of course Andrew and Peter found it absolutely hilarious. I was not so amused and went to change only to come back down in clean trousers and sit on a pool of gravy I'd missed when wiping up. Three pairs of trousers in one hour is not good. More washing for me darn it! The cats found me fascinating all afternoon, probably because I carried the faint whiff of gravy around with me for the rest of the day. My bag will have to be washed but I'll have to use it until I get a full load as I don't have another one. I'm just going to have to get used to all the extra feline attention for a day or two. I did try sponging it but it still stinks, joy!

In the evening Peter went out so I had the house to myself and watched back to back NCIS. I never watched it until a few weeks ago and now I'm addicted and watch it whenever I can.

Andrew made it down the motorway unscathed and is thoroughly enjoying the feeling of more power. He says he feels less vulnerable now as he can accelerate out of trouble. I'm not sure whether that makes me feel better or worse. Of course he is delighted at the admiring looks he's got from his flat mates and he has finally conquered his alarm system.


Today we are going to go out for a mooch around the shops. I'm looking for Christmas ideas. I normally resist doing anything regarding Christmas until late November at the earliest but, since being on the transplant list and knowing my world could be turned upside down with one phone call, I decided not to risk delaying and to just get on with it. We are also out looking for something for Andrew as it's his birthday on Saturday. He'll be twenty, can you believe that! I feel so old no longer having teenage kids around. We might even make it into a charity shop or two to do some book hunting.

I have absolutely no plans for the rest of the week and believe me that is a good thing. Well actually I have one plan and that is to make a birthday cake for Andrew. I'm hoping for a few good days so we can go out with the camera and get some pictures taken.

Finally I awoke this morning to some fabulously exciting news. I'm sworn to secrecy at the moment but hopefully tomorrow's blog will reveal all.

Right time to get my glad rags on.


Sunday, 29 September 2013

Recipe For a Quiet Life

I woke up this morning in the sure and certain knowledge that for once I don't have to do anything, well except prepare food, which I like doing anyway.

I started my day with breakfast in bed and the papers where I spent a happy hour tearing out recipes from the supplements, as is my habit. I do this quite a lot as there can be some little gems hidden away amongst the perfume adverts and TV reviews. Today I've gather a chocolate and Guinness gateau, a chicken thing and a shepherd's pie.


I tend to ferret them away in my little recipe book and try them when in the mood. Some get thrown away before I start as a second look makes them too complicate or time consuming. Others are tried once and disguarded while the rest are marked up as being suitable for special occasions or become a firm favourites and enjoyed on a regular basis. These are then copied out into my recipe book just in case I loose the page. I am so glad I'm off next week, with the weather getting too cool to sit out in the garden and read I'm turning more and more to my winter hobby of cooking up a storm.

Yesterday afternoon I finally got to rest and enjoyed Carry On Nurse while the men in the house, and the neighbours, clucked and fussed over the new bike, now named Lara, fixing top boxes and working out which bit does what. The alarm still hasn't been mastered however, and goes off every time Andrew starts the thing up. He his going on the motorway on it for the first time later today when he returns to uni. My heart will be in my mouth.

Before that though I've got to get through this morning and I can't describe the sheer joy of not having to make up sandwiches for the week or ironing everything or rushing around trying to fit everything in. I am going to do a bit of washing but that is purely because it is good drying weather out there at the moment and an opportunity not to be missed.



The garden is now awash with fallen leaves and the colours around the village are gorgeous. Having said all that I'm amazed that over the last few days I've been able to stand outside and chat in short sleeves without feeling chilly. Strange weather I must say but welcomed nevertheless. I just hope it lasts until after I get back from Canterbury.

The mystery of the name of the new drug seems to be solved. Several people have come forward with the suggestion 'Veletri' which, although still doesn't sound familiar, is a good fit with me remembering it started with a 'V'. Obviously I'll confirm this when I actually get the stuff.

Strictly Watch

Could they have given Vanessa a more appropriate song to dance too? 'That Don't Impress Me Much', no kidding, surely Vanessa has to be the first to leave. I did like the way she put Craig in his place though.

Dave Myers fulfilled my every wish and was hilariously hopeless but it was clear he was having a ball and succeeded in reducing the judges to tears, one bonus point to him. That is one dance well worth watching again. Deborah and Fiona also did unexpectedly well though both were crippled by nerves. Hopefully as the series goes on that will improve and we should see some good dancing from them. I am so pleased for Anton who expressed a hope that he make it into December this year, and so say all of us.

I have a theory about Anton. I think he is given the no hopers so that should Sir Bruce fall ill during the series Anton will be able to take over having gone out in the early stages.

The best of the rest were Abby Clancy and Paul Robinson and they, along with Suzanna Reed, are my early front runners. Of course nobody goes home this week and the competition starts properly next Saturday so we get to see everyone again, joy!

My prize for most annoying competitor goes to Julien. Yes I know he's Welsh and I should be supporting him but the man just wouldn't shut up. It was like watching a kid who'd just overdosed on jelly beans.

My tips to leave next week are Julien, Mark, Dave or Vanessa. I think it will be Vanessa but then what do I know?

Right time to hang the washing out and then an hour with my book before preparing lunch.

Saturday, 28 September 2013

Goodbye, Hello

Well after a hectic day yesterday welcome to hectic day two.

Firstly lets finished off what I started in yesterday's post. I still cannot remember the name of this new form of Flolan. I've racked my brains and nothing is surfacing but when it does you'll be the first too know.

I don't know why I got so upset. It is not a big meds change but I suppose it is natural not to like hearing that you've deteriorated again, even if it is only a little bit. I' ve felt so well on my current meds for so long the thought of upsetting the delicate balance between feeling better and puking every five seconds, or feeling a bit bad and still being able to eat is daunting. I know it is still Flolan at the end of the day so maybe my fears are unfounded. All I can do is wait and see.

To cheer me up, and to try and put on some more weight while still able to eat, we called in at the Ace Cafe on the way home for lunch. I had the British breakfast which consisted of bacon, sausage, beans, tomato, mushrooms, egg and toast. I didn't finish it but I had a little bit of everything, which is more than I usually manage. I washed it all down with a mug of tea and started to feel better.

From the Ace we headed up the M1 to Hatfield and Tesco. Our shopping went down from near enough £100 to just over £20, the teenage boy effect is enormous. Then, with still an hour to kill before picking Andrew up, we decided to look around the Galleria. How disappointing, Milton Keynes is miles better. The Galleria did have a Tefal shop and a Le Creuset shop which pleased me no end as I'm always on the hunt for stuff that will make my life easier. Finally, at just gone four, we picked Andrew up and headed home. Shattered, thirsty, and in need of some fruit.



This morning it was up at half seven to take the Honda to Bedford and after exchanging paperwork and money it was on to Letchworth to pick up the Suzuki. I was still not sure about the whole thing. The new bike looks so big to me. However after watching him in the mirrors as he followed me home it didn't look too bad. He certainly knew how to handle it and looked safe so some of my worries have eased, though I suspect they will surface again when he's riding it up and down the motorway to placement every day. In the meantime he's promised to take it easy while he's getting used to it and as he's a sensible child I know I can trust him not to go and do anything silly.


So one and a half days into my holiday and so far I've done nothing I actually want to do. Still Canterbury is not far away and once there I'll be at no one's beck and call except my own.




Strictly Come Dancing Watch

Yes it's back and the first six celebrities danced last night with surprisingly good results. 


I have to admit I had to force myself to stay awake to watch it but I'm so glad I did. My favourite of the night was Susanna Reed. That girl can move, however I am a bit worried about those celebs that seem so good at the beginning. They start well but then as others start to improve they tend to fall behind and in some cases, Scott Maslen, burn themselves out.

Mark Benton was surprisingly good, obviously following Lisa Riley' lead by proving big people can be light on their feet. He added just the right amount of comedy to his routine too, which always helps.

Tony Jacklin was bottom of the heap but again I thought he was better than average. His nerves were playing him up badly but he got through it with only one minor slip.

All in all a good introduction but then the real turkeys of the competition are dancing tonight. I'm thinking Vanessa Feltz here. The one person I am really looking forward to is Hairy Biker Dave Myers. I think he could be either surprisingly good or downright awful. However which every side of average he lands I'm sure he will be entertaining and is so laid back he probably won't give a toss about what anyone thinks. As long as he gets a round of applause he'll be happy.

Right my blueberry muffins are due out of the oven. More tomorrow.

Friday, 27 September 2013

Latest Visit to the Royal Brompton

Well as you all  know I'd rather been dreading this as I know I've been off colour of late.

As is always the way, when I'm not bothered about the visit the roads are chaos and I'm late. When I'm anxious and really don't want to go they are empty and we sale in arriving thirty minutes early. We also had no trouble parking.

I had all the usual tests and after much humming and scratching of heads it was decided there has been a slight change in my condition. It's not a bad one or too serious but it is definitely there. So they have decided to treat early in the hope of halting progression and maybe even getting me back to where I started. Unfortunately this is going to mean a drug change but that might not be as bad as I'm dreading.

The are putting me onto a new drug that only got approval yesterday. He told me what is was twice and the name has gone clean out of my head, all I can remember is it starts with a 'V'.

This drug is Flolan but Flolan with a difference. This is stable in air which means I can make a whole batch up in one go and keep it in the fridge only changing the cassette once a day instead to twice. This will free up my time considerably and make it easier for me to go out in the evening if I want too. That's the good news. The bad is that as it is a different composition all the problems I had with nausia and weight loss could happen again until I get used to it. Even if I'm fine I'm still going to have problems because my dose is going to be increased too. Bugger! They are also increasing my Furesomide from 40mg to 80mg as I'm badly retaining water. Not at all happy, at all!

Any way that is the brief update. I'll go into more detail tomorrow when I've got my own head around it. As it is I'm shattered and desperately in need of a cuppa.

Sunday, 22 September 2013

Party On Dude!

Oh my gosh I can't tell you how much I enjoyed yesterday. I'm not a big lover of barbecue's, as you know, I've complained about the neighbours efforts plenty of times, but it is different when you are in attendance.

Laurence's car was not ready as it turned out so while I cooked lunch Peter set off on a one and a half hour round trip to pick him up. By either a stroke of luck, or as I like to call it immaculate timing, I placed a bowl of pasta with spicy chilli sauce in their hands as they walked through the door. After eating I left the boys to talk while I got changed and made up, a process that took all of ten minutes, and we were ready to go.



I elected to drive down and apart from a couple of hang ups we got there by early afternoon. The party took place in a huge back garden and there were tables and chairs set out plus a gazebo in case it rained. It wasn't crowded but there were enough bodies to make a decent get together and I recognised a fair few faces from host, and birthday boy, Andy's wedding to Cira (I'm sure I've spelt that wrong, sorry). Introductions done we handed over our present of Welsh Whiskey which was accepted with delight by the host and admired by everyone else. I was delighted as Welsh Whiskey is usually derided but most there seemed not only to have tasted it but liked it.

Despite being outside I didn't feel cold, which suprised me but the weather had warmed up considerably since last week. If it had been a sunny day I probably could have sat there in short sleeves, as it was I kept my fleece on and was quite comfortable. There was a wide variety of drinks available including, to my absolute delight Dandelion and Burdock. The taste took me straight back to childhood parties, I must get some on my next shopping trip.

While I was enjoying a welcomed drink Laurence and Andrew were getting acquainted with a large and boisterous German Shepherd call Holly. Now as a family we are not dog people. Peter and Laurence are allergic to them and Laurence is nervous of them having been badly bitten as a child. However Holly was a delight. Well behaved and playful it wasn't long before Laurence was giving her bits off his plate and Andrew was playing fetch with her.

As designated driver I stuck to the D&B despite numerous alcoholic temptations and decided to get high on jelly beans instead. The food was wonderful and I was pleased to see a wide variety of salads available. Cira (sorry) is from the Ukraine so some of the items were new to me. In particular there was, what on the face of it, looked like a beetroot salad but when you ate it there was also tuna and egg buried in it and it was absolutely my favourite thing there. I meant to ask for the recipe but forgot so I'll make the request by email instead.



The drive home was problem free but I was almost two hours late for my drug regime. Eek! I got it done in double quick time and suffered no ill effects, thank goodness but next time I'm taking everything with me, just in case.

We finished the day lounging around in front of the TV and everyone ended up going to bed fairly early.

Today is another busy one. Mid morning Peter drove Laurence home while I prepared a casserole and popped it in the oven. I thought a casserole, once in the oven, would be the easiest option as it doesn't matter if it is served late. It will just sit and simmer for as long as you want. And thanks to my new gadget I got the veg prepared in double quick time. That thing is becoming a lifesaver, it's brilliant.



As Peter's car is now MOT less until Tuesday my little Mito is the only car, out of three, currently road legal so that is complicating things a bit. Hence all the rushing around trying to fit everything in this weekend. When Peter gets back, I'm expecting him about midday, we will pack the car with all Andrew's stuff, sit down for lunch and then head for Hatfield. I tell you I am so, so looking forward to later this afternoon when I can make some cheese on toast, grab a can of ginger beer and collapse onto the settee until I retire for an early night.

I have four days in work and then I'm off for two weeks holiday. I think I'm going to need it.

Well time to get myself a cuppa and read the paper before the madness starts all over again. Next blog Friday.

Saturday, 21 September 2013

Nothing Goes To Plan, Again!

As is always the way what I thought was happening today isn't. Well not entirely.

I was up early after a truly dreadful night's sleep. I was still wide awake at three and after a fitful doze awake again at eight. This is not good. I'm still not tired now, well not exhausted as I was expecting. If I don't fall asleep in front of the TV tonight though it will be some sort of miracle.

I think I can lay the culprit down to something I did yesterday that I haven't done in years. I had a coffee. Not just a coffee but a cappuccino. Now I have drunk the odd coffee in the last few years but they have always been decaff. Yesterday, by accident I had a full blooded cup from Costa. We were doing the Tesco run and Andrew fancied a drink so said he was off to get a coffee. On impulse I decided to have one too and asked for a cappuccino. Off he went and it was only when he'd gone that I realised I'd forgotten to say decaff. I was pretty sure he'd remember though so didn't stress. My first sip alerted me to the fact this was not decaff and it tasted wonderful so I kept quite and enjoyed.

By the time I got home I was buzzing. It's the same with alcohol, I've been so long without it one glass of wine sends me over the edge. Of course I wasn't drunk just hyper and a little worried that my heart rate was going to go haywire. It didn't but I got a lot done in a very short space of time. I got the washing in, picked some blackberries and packed the shopping away. Then I sat down to rest but fidgeted all evening. By bedtime I was feeling a bit more relaxed so picked up my book confident that a chapter or two would be enough to send me off into the land of nod as usual. No such luck, half a book later I was still wide awake but turned the light off for Peter's sake. The rest you know.

So onto today's little dramas.

Late yesterday we got a call from the garage, the one we are buying Andrew's bike from, to say that they are one mechanic down and his bike would not be ready for collection this morning. Cue moody teenager for the rest of the day. Then this morning we got another call to say it might, might be ready late this afternoon but more likely Monday. Andrew is resigned but annoyed. I'm resigned to maybe having to cut the party short to get over to Letchworth. No mean feat considering the party is in Ascot but at least I'm having a quieter than expected morning.


We also had a late night call from Laurence to say his car has been in the garage since first thing Friday morning and he might get it back late this morning. If he doesn't then we are going to have to race up to Rushden in Northants to pick him up and then hurtle down the motorway to get to the party. I'm keeping my fingers crossed that he will be able to drive himself down or it's going to be an extremely busy, and stressed, afternoon.

Tomorrow could be a nightmare. Taking one child to Rushden and the other to Hatfield. Arrgghhhh!

I'll worry about that tomorrow as today I have a party to look forward too. I'm so excited! I did something I almost never do and went out and bought some cosmetics. I always wear mascara and a little foundation to try and make my skin tone appear normal. It is usually an unattractive shade of purple on a white background. I look as though I've died. Anyway, I didn't want anything too obvious or extravagant so I bought a new mascara that's supposed to thicken, curl, fan out and lengthen my lashes as well as enhance my eye colour. Really? No sure about that, I mostly bought it because I liked the shape of the tube. To that I added a small pallet of three complimenting eye shadows in neutral pinks and beige, I'm going for the not made up, made up look. And finally topped it all off with a grey eyeliner. All I've got to do now is apply the stuff without getting it in my eye or smudging it all over the rest of my face. I already have some tinted lip gloss for special occasions so didn't bother with lipstick.

I have to say I felt quite girly picking things up and putting them down and holding several colours trying to make a decision as to which one to get. If I'm successful I might start wearing make up more often. I've even toyed with the idea of getting my hair cut, again, but decided that was to drastic to get done in a rush.

I've added a little picture to this blog that I was told more or less sums me us. See what you think.

Party report tomorrow.

Friday, 20 September 2013

Go! Go! Go!

Another Friday, another row with my drug delivery company.

Ever since I've been having drugs delivered it has always been on a Friday morning between eight and one. I've had that slot for over two years. Today, the ONE Friday I've dared to arrange to go out this afternoon it changes. Even worse it changed and nobody bothered to tell me. I always check on their website for delivery times as they tend to narrow down on the day. I logged in expecting to see something like ten to twelve or similar and saw two to four. What! I was straight on it and, maintaining a polite but furious tone, explained to the bloke on the end of the phone that such a change without notification wasn't on. Fortunately I got hold of someone who was entirely sympathetic. He told me to leave it with him and he'd ring me back. I hung up not really expecting him to do so but he was as good as his word and ten minutes later he was telling me that my delivery would be here before eleven. It arrived at 10.55. Result!


I enjoyed yesterday at work, though it was a struggle, and by lunch time I was wondering whether I'd actually done the right thing but I caught my second wind and made it. Now I've got three days to rest up before a four day stint.

Well I say rest but actually it's going to be a bit all go.

Today we are taking Andrew out to get all the bits and pieces he needs for uni which starts on Monday. Tomorrow we are picking up his new bike in the morning and then are off to a party in the afternoon. Sunday we are taking Andrew's stuff down to uni and settling him in. Busy enough but all this has been complicated by Laurence's car breaking down on Wednesday night. It needs a new clutch and will hopefully be fixed today. If it isn't we are going to have to collect him, take him to the party, it is Andrew and Laurence's Godfather's birthday, and then take him back home. So much for a restful weekend.

Once again I'm left wondering why everything always happens at once. With so much on now would not be the ideal time for 'the call' but I know that's not going to happen. Tomorrow it is nine months since I was put on the list. I can't help but feel a bit down but I am just a baby in the waiting stakes. There are people out there who have been waiting way longer than me, some of them years longer and not even a false alarm. I suspect a false alarm would make the wait even more agonizing and feel doubly sorry for those that have experienced it. On the other hand at least they know what to expect when the real call does come.

Death came a little bit closer today, in the form of Smirnoff. I was drinking from a cup when he jumped on the desk and nudged the bottom of said cup to say hello. Cue lots of spluttering and coughing and a wet shirt. That would be a way to go. 'Death by cat', surely a worthy entry in the stupid deaths category. Bless him, he was only being friendly and gets called a 'stupid cat', he has now stalked off in disgust. I think it is going to be one of those days.

Doesn't look much like an assassin does he.

I'm off up the garden when I've dried off. A load of blackberries have just become ready to pick and I want them before the birds get them. At this rate I'm going to have more blackberries in the freezer than anything else. Brilliant!

Well got to unpack and check my delivery. I just hope they haven't forgotten anything this time round. 

Wednesday, 18 September 2013

So Tired, Tired of Waiting, Tired of Waiting For You.

Feeling a little stir crazy I turned my attentions to doing something a bit more positive and yesterday I unpacked and repacked my hospital bag in anticipation of 'the call'. To be fair I hadn't really repacked it after my trip to Aberystwyth in July so it really needed doing. Of course this got me thinking.

I thought about my friend at work who is still thriving after his transplant last year. Then I thought of Sita and her less than perfect experience and then of course poor Anne. Since going to Anne's funeral I've experienced something almost akin to panic attacks when thinking about going through with the transplant. I've tried to concentrate on John and how well he's doing but it's difficult. Before Anne I was so sure I'd sail through everything and be fighting fit in a couple of months. Anne's plight has really been a much needed reality check that things don't always go to plan.


Of course the fear is also mixed with frustration at not having had the call yet. I know people who have been on the list for a lot longer than me so really I shouldn't complain. However I tired of waiting for the call now and am actually not really all that sure I want it. Within a couple of hours of the simple act of stuffing a towel into a suitcase I'm a screwed up mass of mixed emotions. Take it from me, thinking can be seriously bad for your health.

Smirnoff of course loved the fact I was packing as it gave him an opportunity to sit in a drawer. He is such a naughty boy at the moment, it's almost like having a kitten back in the house. At least his antics did raise a smile, and a laugh when he missed his footing and fell out of a drawer. One of the reasons for keeping pets, they can really rescue your mood.


So after a rather depressing day I've woken up this morning full of anticipation. My uniform is pressed and hanging on the door ready for tomorrow and I'm ready to go back to work.

OK, I'm not fully, fully fit. I'm still a bit bunged up but rather than think I have a sinus infection I'm now thinking it's just normal post cold irritation and will pass in time. I'm only going back for one day, which is ideal as it allows me to judge whether I'm really ready before committing to a full week from Monday.

It is going to be a very busy weekend though. On Friday we are taking Andrew shopping to stock up for his new term. We've decided to give Aldi a try. A lot of my friends are raving about the price and the quality so we thought 'why not'. Especially as we always end up paying for Andrew's stuff so if we can get it a bit cheaper it would be a bonus. I'll let you know what I think after my visit. Saturday we are 'hopefully' picking up his new bike in the morning and then going to the party in the afternoon. On Sunday we are moving Andrew into his new digs. At this rate I'll be going back to work on Monday just for a rest.

The sun is out so I'm off up the garden in a few minutes to gather more blackberries. I didn't get to make the muffins, I fell asleep in front of the TV instead. I will make a better effort this afternoon, I promise.

So what to do on my last sick day, well I'm just going to chill. The temptation is to rush around doing things but I don't think that will help my situation at all. So a little bit of gentle blackberry picking, got to get my fresh air remember, a little bit of gentle baking and a DVD this afternoon fits the bill nicely.


Before I know it the weekend will be here and my sense of anticipation will increase. Evenings and weekends are the most likely times you can get 'the call', so although I'll be out and about enjoying myself it will be with one ear on the phone. How I wish I could just forget about it and really let rip but I can't and that is how life is, for now.

Today we are booking our hotel for our little break in October. It is only going to be three nights away but not having to worry about cooking, cleaning or doing anything other than what I want to do is going to be sheer bliss. I can't wait. We are going to Canterbury as I've always wanted to visit the cathedral there. I'm not particularly religious but I do love the architecture of our cathedrals and churches. So excited!

Well time for my little bit of foraging, next blog Friday.

Tuesday, 17 September 2013

Troubles With Tarmac

I did it, I finally gave in and turned the heating on last night.

It was only for an hour but I still felt defeated. Normally we can keep the heating off until October, or as in one memorable year, November. I am blessed with a warm house and since we've had the insulation put in the walls it is even warmer so our heating bill has fallen significantly but sitting on the settee at nine o'clock last night I decided it was time to stop shivering and just use what we've got. My cut off point is if I'm wearing a t shirt, jumper and cardigan and am still cold. I was wearing all those things and was thinking about fetching a blanket when I thought 'sod it' and switched the boiler on. Bliss!

My head cold is making big strides towards disappearing thank goodness. Although I still woke up with a heavy feeling in my nose and cheeks, I could breathe, which is a definite improvement. Also my sore throat is improving and my cough has stopped. Yay! I'm on the mend! Saturday's party is looking more likely with every hour.

It is a balmy 11c out there this morning, but very windy and threatening rain. My bit of fresh air was taken with some speed and, as there were no further ripened blackberries in evidence, I was soon back in the kitchen making a nice warm cuppa. I might fore go this afternoon's effort, I don't want to set my recovery back by getting all cold and wet.

I was really worried about Tarmac yesterday. It is now exactly a year since the vet told me he wouldn't live until Christmas. Now we are heading for another Christmas and he's still here. OK he has lost a bit of weight and he's not as lively as he was but then he's fifteen so you wouldn't expect him to be bouncing around like a teenager. Yesterday he didn't come to get me out of bed for his breakfast and when I found him curled up asleep under the rocking chair my heart did a little skip. A tentative stroke found him still to be breathing but he was definitely out of sorts. Apart from a couple of soirées out in the garden and a tentative mouthful or two of food he stayed there all day. I was torn between taking him to the vet, who would undoubtedly give me another dour prediction, or waiting to see what he was like in twenty four hours. A quick pummel of the tummy made me lean more towards the latter option as he obviously wasn't in pain, there was no guarding for instance, and he has done this before when he's eaten something that disagrees with him.

I woke up resolved to phone the vet as soon as they opened this morning but then I felt this weight on the bed and a little pink nose burrowed under the duvet as a loud purr announced Tarmac's desire to be fed. As soon as I moved he started to dig me out and he bounced down the stairs in front of me anxious for his breakfast.  When he finished he joined me back on the bed and curled up next to me, purring contentedly, as I read the papers. Normal service has been resumed and I can relax again, well until the next time.


Today I'm going to make some blueberry muffins but with a difference. I'm using blackberries instead. I'll let you know how they turn out. The rest of the day will be spent resting on the settee. Although I'm doing more now, my men insist that I spend at least a couple of hours each day immobile and resting. This actually suits me at the moment as Andrew, grateful for the loan for his bike, is keeping the house spic and span as a way of saying thank you. He returns to university on Sunday and I will miss him, not just for his housekeeping skills. It means that once again I'll be left on my own when Peter is out at work. Although I quite like the odd day of solitude, when I'm ill in particular, I like the feeling that there is someone else in the house should there be a problem.


Talking of Andrew, he got confirmation that he's passed his first year yesterday. I must say they left it a bit late but then he only finished his last placement ten days ago so it's not that surprising. I just hope they are more organised this year and give him the right amount of hours straight up so he doesn't have to spend next summer catching up again.

Well time for my morning cuppa and a look at the news though I suspect that won't take long. Am I the only one fed up to the back teeth of Syria at the moment? I know what is happening there is dreadful but do we have to have twenty minutes of repeating the same thing every bulletin? 

Monday, 16 September 2013

Don't Stop Thinking About Tomorrow

Well the predicted high winds didn't materialise overnight and the morning is bright and sunny. It's flipping cold though and breezy. I'm a bit disappointed as lying in a warm cozy bed listening to the wind and/or rain is one of my little pleasures in life.

Another of life's little pleasure is travelling.
Hawaii, so looking forward to a return some day.
I loved to travel, as anyone who knows me well will testify my favourite destination was Italy, quickly followed by Hawaii. Both destinations will be visited again as soon as I am given the all clear. Being grounded I now take my pleasure from hearing about other peoples holidays. I love seeing their pictures and hearing about what they did, what they ate, how hot is was etc. Now I'm not claiming to be a saint. Of course I feel twinges of jealousy from time to time but I would never deny them the pleasure. I'm also finding it useful as I'm slowly building up a picture of what places are like and whether I'd want to go there. It's like having my very own set of travel guides who are being brutally honest and not just trying to earn commission off me.

So far I've chalked up South America, Peru in particular, Mexico, Australia and Thailand as all places I've never been but want to go. Here's hoping.

As part of my 'get back on my feet' routine I've begun taking a bit of a turn around the garden a couple of times a day. This ensures I get the prescribed 'fresh air' but means I can nip back inside if I get too cold. My heart breaks at the state of the garden. There are so many brambles everywhere but closer inspection revealed masses of blackberries. I rushed back in and got a bowl and spent a happy ten minutes or so filling it. There are so many berries that I'm going to be able to freeze some. I feel a glut of blackberry and apple pies and crumbles coming on this winter. I might even try a blackberry ice cream. So, for the near future at least, my garden strolls will include a bit of berry picking. It's only a little thing but it has really cheered me up.
Even better Andrew has promised to cut everything back as soon as all the berries are collected so at least I wont have to sit and look at a messy garden through the winter months.

That's another of the things I can't wait to get back to, doing a bit of gardening. There was nothing I liked more on a bright spring day than getting the flower beds ready for planting or trimming back the herb garden. In autumn it was pruning, sweeping up leaves, planting bulbs and generally readying the garden for winter. Now I can still do a bit of light pruning but my efforts are no match for the rampaging force of nature. Arrgghhh! The sheer frustration is driving me nuts!

Oh Yum!

On Friday it will be nine months since I was put on the transplant list. Although the wait has been frustrating, and sometimes disheartening, the passing of the nine month barrier gives me renewed hope because I'm now entering the 'average' wait time period as quoted by the surgeon. It almost feels as though I've been counting off the last eight months just to get to the 'average wait time' window. Maybe I'm stupid but I really feel I'm in with a better chance now. And, as I'm always saying to myself, each day that passes without a call brings me one step closer to getting it.

I was delighted to get a call from my supervisor this morning. Everyone has been quite worried it seems and are hoping I'm on the road to recovery. It is nice to know that there are people out there thinking about me. And for all my moaning about the job I really do work with some lovely, supportive people.
Well it's back to the settee for my afternoon rest and then maybe, if the rain holds off, another quick turn around the garden before dusk.

Sunday, 15 September 2013

A Wee Bit Of Wind

An unusual thing has happened to me. I've been invited to a party!!

I don't get invited to many parties anymore, simply because people know I have trouble going out in the evenings because of my meds and the tiredness that comes with PH. I can't drink, I can't dance and by the end of the evening I'm too tired to drive, so all in all a bit of a party pooper. However this party is an all weekend event which allows me to arrive and depart at times when I'm most likely to be able to enjoy myself. I still won't be able to dance and I still won't be able to drink but I will be able to drive so those coming with me can have a good time.

Autumn has arrived

The loss of a social life is the hardest part of being ill. You certainly find out who your true friends are that's for sure. Lots of people I thought were my friends, who I used to go out for a meal with or go out for a drink with after work, have vanished in the mists of time. I'm not saying there is any animosity but you can only turn down so many invitations before people stop asking. Out of everyone I knew I'd say I've got around twenty who still keep in touch and out of them only around three I see with any regularity, though these three I know I can count on should I need them and one in particular I know would do anything for me at the drop of a hat.

I have, of course, made new friends since being ill. These are people who are in the same boat and who I'd never have know existed if I hadn't developed PH. I feel blessed to have met them and they will be friends for life, transplant or no transplant.

So I've got a weekend to look forward too. All I need to do now is get rid of this damned awful cold. To be honest the temperature, headache and cough have all gone now but I cannot shake this bunged up nose. I'm steaming twice a day and that helps for a couple of hours. Going out in the fresh air also helps, if I can keep warm that is. My face feels as though I've been punched and I'm worried that maybe my sinus's might be a little inflamed. I thought/hoped I'd be well enough to go to the GP and ask for the sick note to be cancelled tomorrow but that is looking unlikely now. It seems I'm just going to have to give in gracefully and do my time. On the plus side the palpitations and pain have not returned so it looks like that was just a blip of some sort.

My appetite is returning but has become very specific. I'm eating fruit, particularly blueberries, raspberries and plums like there is no tomorrow and I am fixated by Marmite on seeded wholemeal bread. Told you it was specific. The fruit I can understand, full of vitamin C and ideal for fighting off a cold. I've always liked Marmite so that's sort of understandable, having something salty and almost bitter to counteract the sweetness of the fruit but I really, really love Marmite at the moment. I'm three quarters of the way down a big jar and Its only been a few days. I'm sure anyone with a science back ground will be saying it's because I need the vitamins, which is probably true, but come on! Marmite? Really?

I woke up this morning to a beautiful sunny but chilly day. My weather station said it was on 6C at nine o'clock. How come winter has arrived so suddenly? Of course this is only the calm before the storm, quite literally. Later today and overnight we are expecting the first big storm of autumn. And now at eleven o'clock the sky has clouded over and the wind is picking up. Overnight we are expecting gales of between 50 - 70 miles an hour.

Got to make the most of the sun now there's so little of it about.

Now I love a good storm but it always worries me a little bit, especially if the Silver Birch is still in leaf. This is one of the tallest trees in the street, if not the tallest, and could do some real damage if it ever came down. So far it has weathered everything nature has thrown at it. It is very healthy and seems sturdy enough so I'm hoping it will make it through tonight with everything intact.

I know this was taken in winter but it gives you
an idea of how big the tree is.

The cats, on the other hand, hate storms. Thunder, high wind or very heavy rain sends them scurrying under the coffee table, the only space in house they can share without fighting. At the moment Tarmac is sleeping but Smirnoff is sitting beside me glaring as though it's all my fault.

Today I am cooking lunch. For two reasons. Andrew went out to a party last night and came in sober but late, so he is unlikely to emerge from his pit until midday. Secondly because I'm trying to get back into the swing of being more active. Testing the waters to see how well/ill I really am. I've made mistakes before when I've felt absolutely fine sitting in front of the TV but as soon as I started to do something felt like death warmed up. I'm making something simple that won't require a lot of standing around. Judging by the weather though I'll soon be making stews and soups again that require no effort apart from slinging it all in a pot and leaving it to do it's thing. That's what I call my kind of cooking.

Right time to get on with it. Something warming I think and not to heavy. Then we'll batten down the hatches and watch something on TV. I love Autumn, I really, really do. Almost as much as Marmite.

Saturday, 14 September 2013

The Blue Bandit

Yesterday's effort to get some fresh air and stock up on some much needed fruit turned out to be a little bit different.

Andrew had finally made up his mind which bike to go for and wanted my approval, so I was driven to the garage and then wheeled into the showroom. The bike is a Suzuki Bandit 650S, don't ask me what all that means, I know less about bikes than I do cars. All I know is it is bright blue and a lot bigger than his current bike. I don't have a picture as yet but when I do I'll post it so you can all see what I mean.

It's a bit wet out there this morning
During the sales blurb Andrew asked about finance but I quickly vetoed that when I heard how much he'd actually be paying. I've recently received a nice little pot of gold from my bank in PPI repayments which I was keeping for a holiday once my transplant was done and dusted. However, I won't be able to go abroad until at least a year post transplant and I have no way of knowing when that will be, it might be another twelve months, it might be never, so I decided to pay for the bike in cash. Fair play to Andrew, he was very reluctant to take the money from me but when I explained that I'd rather he used the money than pay over the odds for a loan he saw sense. He'll be able to pay back a massive chunk when he sells the bike he has now anyway and by this time next year he will be in full time employment, he's already had an offer from the London Ambulance Service, so he'll be able to pay me back much quicker then.

Now of course I'm wondering whether I've done the right thing. The bike is so big, well to me it is, but Andrew makes a convincing argument. A bigger bike means he's easier to see so is less likely to be cut up. It has a top box and panniers, so he can take his uniform and equipment with him without the risk of it getting blown away or wet. The riding position is much more comfortable so he won't end up with the backache he's been experiencing on longer journeys. On the downside he won't be able to weave through traffic jams so easily but to me that is something in it's favour. The bike is also going to be restricted for a year so he will have more power than he has now but not enough to get into real trouble. The biggest thing in it's favour is the insurance. For some reason I don't understand a bigger bike means less insurance.

Apart from finding myself laying out for a bike I'm never going to ride, the trip out really improved my spirits and my head did feel a lot clearer by the time I got home. I came back with armfuls of fruit and veg so I'm going to get more than enough vitamin C to help fight off whatever it is I've got. This morning though I find myself bunged up and thick headed again so the benefit was only temporary, however I didn't need to cover myself in Oil of Olbas in order to breathe last night so that's a relief, and not just for me. Peter hates the stuff.

I see no sea
I've woken up to a breezy, wet day and according to the forecasters we are in for a real storm Sunday/Monday. So obviously the perfect time for my village to hold a seaside themed carnival. The flyer came through the letter box last night as the rain hammered against the windows and I had to do a double take when I saw what it was. The delights of this event include the 'Prettiest Bitch' competition, which I'm presuming is to do with dogs but you can never be too sure. Then we have the 'Children's Tug of War', Sea Cadets display, not sure why we have Sea Cadets in land locked Bedfordshire but we do. Then a bewildering couple of attractions call 'Quack Pack' and 'Nessfit'. Other attractions include Morris Dancers and the village choir. If I'm well I might just go along with my camera, if only to photograph the 'Doggy Fancy Dress'. I'm suspecting there is not a lot going on for cat lovers.

Today I'm inclined to stay indoors and wallow but no, I'm going to be taken out to 'get some more fresh air'. Apparently Peter is taking the GP's advice to heart. However as there was a definite improvement following yesterday's excursion maybe it would be wise to give it another go. My sick note runs out on Wednesday so I do need to get myself back into the habit of 'doing' things rather than sit on the settee and issue orders. And you never know how you are going to feel unless you try. At least my chest has remained free from infection so I must be doing something right.

The drawer raider caught in the act

This morning Smirnoff expressed how bored he was by rummaging through the drawer on my bedside table. I keep my morning tablets in that drawer so I can take them with my first cup of tea of the day. It's a routine that helps me remember what to take and when. So after putting the boxes back in the drawer I continued reading the papers and became aware of a rustling sound. There was Smirnoff standing on the table with his paw buried deep inside the drawer trying to hook things out. I hadn't closed it fully and he'd prized the gap open. He's a pain when it comes to drawers. When I'm putting clothing away he tries to jump into them, I did once find him curled up asleep in my jumper drawer. Bless him!


Friday, 13 September 2013

Things That Go 'Buzz' in the Night.

I got a call in the early hours of this morning, though I'm not sure what sort of call it was.

I'd just dropped off, well that's what it felt like, when I was woken up by a bright light shining in my eyes. I sat up blinking and suddenly realised my phone was buzzing away frantically on my bedside table. For a moment I was paralysed with fear and then I grabbed it, as I did it stopped buzzing and the light went off.

By now I was frantic, thinking I'd just missed the most important call in my life, but at the same time comforted by the thought that either my mobile or my home phone would start ringing again in seconds. I punch the button to look at the phone's screen and was puzzled to find it demanding my password. Now it only asks for my password if I've turned it off or the battery had gone and it's switched itself off, neither of which had happened. I tapped in my password and the phone started up. While waiting, for what seemed like hours, as it went though its start up procedure and reconnected with the network two things struck me.


My phone doesn't buzz. It has a very loud, and very distinctive ringtone that I chose specifically so I'd be able to hear it through sleep, over the car radio or if I'd left the phone in a different part of the house. The only time it is silent is in work when the flash and vibrate options are activated but even then it doesn't 'buzz'. And secondly why wasn't it in it's cover? I always put a cover over it at night so that any incoming texts or emails, where the notification tone is very quiet, doesn't wake us up by lighting up the screen.

By the time the phone had settled down I was breathing a bit easier, my home phone had stayed silent as had Peter's mobile and Andrew's mobile so it couldn't have been Papworth. I felt a strange mixture of disappointment and relief, as I always do when each day passes without a call. It is really weird to so desperately want something and yet so desperately fear it at the same time. Emotions I'm sure only those on the transplant list will ever feel or understand.

So now, right royally annoyed at having my sleep disturbed for no reason, a different type of fear hit me. What if something had happened to Laurence or Mum? I quickly paged through to my missed calls list and there was one, from Andrew. I was confused. He hadn't gone out that evening so why was he calling me at three o'clock in the morning? A quick tip toe down the corridor confirmed that he was fast asleep in his bed. I look at the list again and opened up the call. The date received was as expected Sept 13 however the date sent was August 6th. What on earth was going on? I checked my texts, emails and voicemail but nothing had been delivered in the early hours except that one call. How very, very strange.

Lying awake afterwards, mind racing, there were two things that I thought logically could have happened. Smirnoff could have sat on the phone and turned it off somehow. He often sits on my bedside table and watches me read, though how he could have turned the phone off when it has a side button is beyond me. Or the simplest and most likely explanation is the phone crashed for some reason. Again I have no idea why it would do that but these things do happen. Whichever it was it throughly unsettled me and I only dozed off again as dawn began to break.


So I finally awoke bleary eyed and with a bit of a headache at around eight. This I knew right from the start, was not going to be a good day.

I showered and had a milky coffee for breakfast. Yes I know I'm supposed to be eating and, yes, I know I shouldn't have coffee but it was only thing I could face. I didn't even feel like tea. After a shower I did a self check and was pleased to find I was no longer shivery. In fact my temperature has remained normal for over twenty four hours so I'm cutting back on the paracetamol today. My chest is still clear so the antibiotics stay in their bag and my cold symptoms have really 'come out'. I'm sneezing, feel very bunged up and my ears are crackling. However I consider this to be a good sign as things can only improve from here.

Peter has decided, now I no longer have a temperature, that I need to follow the other part of my GP's advice and get some fresh air. In fairness, whenever I have a 'thick' head I always do feel much better for going out. So he's going to drive me to Tesco's to stock up on some more fruit. I'm not sure being driven in a car or being wheeled around the fruit and veg section actually constitutes fresh air but it'll be a darn sight more interesting than sitting on the settee all day, something I've done for the last seven days. No doubt if I'm spotted someone will complain but I'm following doctor's orders and I have to eat.


I got cheered up by the arrival of the first of my orders from the Interweb. I know I'm bored when I start hitting the credit card. It was only a few pairs of slipper socks but I got quite excited. Yes, I am that bored! I prefer to walk barefoot around the house and garden as much as I can but in winter this is obviously impractical. So, after lots of experimentation with various types of slipper, I discovered slipper socks and am now wedded to them. I wear them so much I wear them out so a new supply has to be bought every year.

Right time for lunch and then off for my illicit raid on Tesco. Bit of a rebel aren't I.

Thursday, 12 September 2013

Don't Cry For Me Aberystwyth

Well the much longed for trip to Aberystwyth in October has been well and truly scuppered. This time by the council who have chosen that exact week to revamp Mum's house by practically rebuilding it. They are putting in a new kitchen and bathroom, knocking out walls and replacing doors as they go. The house is going to be filthy, dusty, noisy and cold. No place for someone with chronic lung problems or for anyone needing somewhere even remotely hygienic to change dressings and lines etc.


I suppose we could stay at a hotel or B&B but the whole point of going to Wales is to stay with the family, not a few miles away and only being able to meet up in a café', pub or the library. I doubt the weather in October will be conducive to sitting on a bench on the prom. Besides the last time we stayed at a hotel in Aberystwyth it was less than pleasant. The bed broke before we even got in it. Unbeknown to us one of the legs was actually a pile of books and Peter kicked them while turning down the sheet, the door lock didn't work so we were told to prop the door open with a book when we went out or we'd never get back in, and to top it all they were rude to us. When I went down to complain about the bed, door and the lack of towels the receptionist said to her mate in Welsh 'bloody English, always complaining'. She was shocked to the core when I gave her a dressing down, in Welsh. Not an experience I'd want to repeat, especially as I require a secure, clean environment to store and mix my medication. If my medication went missing I would die within a few hours as my veins and arteries would collapse and cause a massive heart attack.

Needless to say this has come as a huge disappointment. Yes I know I have been to Aberystwyth this year but it was only a fleeting visit and I didn't even get time to see my sister. I was really looking forward to having a less frantic time there and meeting up with a few old friends. The next time I can go down will be in February, that is providing we are not knee deep in snow.


Now I know that this doesn't seem to be that far away but when you don't know whether 'the call' is coming tonight or never, and if 'the call' does come that you will make it out the other side, it's far too long a wait. I can't even suggest Mum comes to stay over Christmas because she won't leave her cats or her church work and even if I could persuade her to visit I'm working both Christmas and the New Year. Arrgghhh! Why is everything always so bloody complicated?

Yesterday, while Andrew and Peter swanned around the house in t shirts and bare feet, I was in a long sleeved rugby shirt, cardigan, thick winter joggers and thick socks covered by even thicker slipper socks and I was still cold. I sat hunched up on the settee feeling very sorry for myself and was a grump for most of the day. I am not a good patient. Andrew cooked lunch, gnocchi in a spicy tomato sauce, topped with Mozzarella and baked in the oven, and very nice it was, I have taught him well. That afternoon he vacuumed the house, mopped the wooden floors and dusted. I think he is already bored being at home after the cut and thrust of Paramedic work.

I sat on the sofa watching old episodes of The Bill, I loved that programme, and drinking copious amounts of tea. I even had a cup of Bovril, I keep a jar in to flavour stews and soups and seeing it hiding in the back of the cupboard though 'why not'? A hot mug of Bovril was always given to me as a 'boost' by my mother whenever I was ill and not eating well. Although I am eating a bit I have always found the drink comforting when I'm out of sorts. Another great comforter is Heinz tomato soup and I also had mug of that while watching Eastenders.


By bedtime the paracetamol had kicked in and my temperature had fallen and I was able to have a much needed deep sleep.

This morning, though still in my slipper socks, I have abandoned the rugby shirt and am just wearing a cardigan over a t shirt. I feel a lot less shivery and the sore ribs have also disappeared, probably also due to the paracetamol. My chest is still clear so I don't need the antibiotics, at least not yet. My head still feels as though it is in a bucket though and my oxygen sats are still lower than normal so I'm not out of the woods yet.

I've been giving thought to the doctor's advice to 'get plenty of fresh air'. Nothing would have induced me to go outside yesterday, I was far too cold and today it is pouring again and the last thing I want to do is get wet. So I think I'll give it another day before I venture out, and only then for a spin in the car.

So another day in on the settee. At this rate I'm going to have to do another sweep of the charity shops as I'm getting through books like a hot knife through butter. Hurry up transplant, I'm really fed up now.



Wednesday, 11 September 2013

Sleeping With The Enemy

I was ready to go to work this morning. I'd laid my uniform out, made my lunch, ensured all the meds I'd need for the day were safely in my bag and my alarm was set. However my lungs had different ideas and during the night decided to play up to the full extent of their ability.

I woke up around three feeling extremely cold and yet sweating and a couple of breathes alerted me to the burning sensation in my chest that just seemed to get worse each time I breathed in. I staggered to the bathroom not really sure what I was doing, grabbed my very thick bathrobe, put it on and climbed back into bed where I shivered and ached until dawn.

This wasn't supposed to happen. I was feeling fine yesterday and then out of the blue my body lets me down, again! This morning the overwhelming fatigue is back and it took all my energy to have a shower while Peter called the doctor. I'm off to see him in about ten minutes and am really hoping he can at least tell me what's going on, even if he can't treat it. I don't understand why my body always decides to ambush me at night. I suspect it's when I'm most vulnerable and I take my eye, ever so briefly, off the ball.

With New York's finest February 2002

Well I appear to have GP with a sense of humour, either that or he was practicing for some doctors talent show. He told me that if I expected to get through winter unscathed I'd need to walk around in a 'space helmet'. He then suggested that we'd both be better off if he just signed me off sick until April. And he rounded everything up by telling me to keep warm and get plenty of fresh air. Well with the weather as it is that might be a tad difficult at the moment. On the serious side I do have a temperature, which is why I'm feeling so cold all the time, and my ears, nose and throat are all inflamed. On the plus side my lungs are, so far, clear. The conclusion is that I have a virus rather than an infection. This is good news in some ways but bad in others. With an infection you get antibiotics, with a virus you have to just ride it out. I have been given some antibiotics which I'm to start 'if you feel worse in the next 24 hours.' In the meantime I'm to drink plenty, take paracetamol to bring down my temperature and rest. If I'm careful I might just get away without it getting worse. So I've been signed off for a week, not what I wanted but if it means avoiding an infection it has to be done.

The memorial wall around the site of Ground Zero February 2002

So I'm back to being a lady of leisure and this has spurred Andrew into full carer mode. When I suggested getting a bit of lunch together I was sternly told to 'sit down, I'll do it'. It's going to be a long week.

It's September the 11th today and the shadow that haunts this day is still dark and all enveloping. I remember very clearly watching it all unfold on the TV as I was sitting in the living room marking. I've no idea why I wasn't in work. I can only think it was when I was teaching night classes and so had the day free. Every horrible moment is etched in my memory, as I'm sure it is with others. I cannot imagine how those that lost people in the attack must feel. How do you go on with the mundane of everyday life after something like that? The fact that people have and have done so quietly and determinedly shows that the human spirit can more or less survive anything fate throws at it.

My thoughts are with the victims and their relatives.

Tuesday, 10 September 2013

Hope for a Cure

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

His balloon has been slightly deflated this morning however as trying to get insurance is proving a bit of a trial. Of course a bigger, newer bike was always going to be a bit more expensive than his current model but some insurers are asking for an extra £1000, which is totally ridiculous, especially when I can insure the two litre 156 for him for just over £900.
Of course I have tired to tell him that at least he does have transport and he acknowledges this, but he'd just like something a bit more comfortable for the long journeys he does. I suspect it is going to be rather tense in the Roberts household over the next few days.

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



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

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

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

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

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

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

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

Monday, 9 September 2013

Listening to Reason

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

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

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



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

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

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

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


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

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

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


Sunday, 8 September 2013

Strictly Fruity

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

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

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


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

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

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

Strictly Watch

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

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

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

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

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

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

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

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

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

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

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