Yay! Two sparkly stickers

A bit of a mixed bag today, which thankfully got slowly better as the day went on.
I had a text first thing from one of my friends who wanted me to turn on the TV and watch a programme called 'Helicopters Heroes'. There was a woman on the programme who was needing a lung transplant and the helicopter team had been sent out to get her to the hospital in time.
I switched on and watched feeling quite reassured that she wasn't throwing up from being air sick in the helicopter, but when they said that she had already had nine false starts on the way to the hospital and at the hospital from the organs either being not good enough or the organs being given away to someone else at the last moment, I was the one who felt sick.
How can I if it happens to me, put my sons through that anguish nine times?
Ok, we were warned that this could happen by the transplant team and it would be tough enough for me to bear it, but I am a believer that if it doesn't happen, then it's just not your turn. Blimey, they even warned us on the first day, that someone had actually been opened up once and then had to be stitched back up, because the organs weren't healthy enough in the end.
But it just wouldn't be fair to have my boys and Julie, drop everything in their lives to make the dash to the hospital that many times for nothing, after all it could threaten their jobs or they might have a make or break deal happening or something.
I have already told them that if they are doing something or have plans, then their lives must not put their lives on hold for me, but now I must sit down and tell them what I have just heard and somehow get them to agree.
It's hard, because I do want their beautiful faces to be the last thing I see when I go down to the operating theatre, but I think a phone will have to be enough now.
it's time to be realistic.

After that little shock and a lot of soul searching going on in my already mixed up head, the day went on and fortunately got better.
Tonight was Halloween, so Reni and I had made up some goody bags ready for the kiddies that Reni knew and had invited round. The first 'trick or treat' knock on the door was from a gorgeous little witch and I'm not sure what her brother was, as he was hiding behind her. I gaily gave them a bag full of sweets, little toys and a toffee apple, only to find out that they were a friend's children that we hadn't accounted for!
So after a bit of frantic juggling around with the sweets and toys in the remaining goody bags and raiding my cupboards to do a quick restock and we were up and running again with enough goodies for all. Phew... thank goodness for being on a diet and having lots of unwanted and forgotten yummy contraband hidden away in my cupboards. If things got really desperate and lots of unaccounted kiddies turning up, then they would have all gone home with pieces of friends holiday presents of Turkish Delight in their bags too!
As soon as the last ones arrived, I dashed off to 'tubby club' for my weekly weigh in and guess what? I've lost another 2.5lbs and received a fabulous boost, as I got 'slimmer of the month!' Yay!
I went home with two sparkly reward stickers, one for reaching (and passing my Club 10 target) and the second one which was extra sparkly, for slimmer of the month. Amazing how a sparkly sticker can have me smiling from ear to ear. Obviously I didn't get many gold stars as a child at school, especially as most of my teachers used to say on my school reports, that if I used my brain as much as I used my mouth, then I would be brilliant...Harsh me thinks!
Club 10, is the target that the club works out for you at the start of your slimming journey, as the weight you'll be after losing 10 per cent of your body weight. How fab is that!?

So a bad come a good day today, but I'm sure there will be plenty like that on this journey that I have signed up for. But I do know that when I unravel every now and again, my family and friends will be there to 'rah rah' me on...bless them.

Lots of love Debbie x

The chill out zone

Welcome to the chilling zone.
Day two of totally chilling out and only doing what is absolutely necessary, as I am determined to shift this cold before it evolves into something more sinister.
And I'm pleased to report, that this chilling lark seems to be working. Headaches are subsiding, my nose is less troublesome, I'm not coughing as much and although I'm still breathless, I'm feeling a little bit more easier about being this cautious rather than throwing caution to the wind and just getting on with things and then suffering.
I'd hate to start off being on the active list with a chest infection.

So today, I had a lie in...again. If I was still working, then this would have been my favourite day of the year...the day the clocks went back so I would get an extra hour in bed...I used to love it!
Next on my chilling agenda was to have a bath and wash my hair, as I looked like one of the extras at 'the Cursed' the other night. Reni popped over and cut it nice and short again for me too, so an extra bonus to feeling human again.
Later, I did wander over to my mother's bungalow to get a bit of fresh air inside me and to challenge her to our daily game of scrabble. I think playing that helps her memory and it helps breaks her day up too, after all the poor old girl never got to Maldon today for our weekly constitutional by the water.
Alas I am brandishing a sore index finger from writing out postcards for my competition entries, all sixty of them...gosh I better win something don't you think!?
It has been ages since I've won anything, but I have won some really nice prizes in the past and I know it sounds corny, but if I get this transplant, well that will be the best prize ever.
This afternoon I sat and watched a lot of the TV programmes that I had recorded over the last week and one of them was Joanna Lumley's tour of Greece.
It was lovely looking at all the beautiful scenery, but to be honest I was looking more at her dress sense, as if I am to have the transplant then I'm not allowed to sunbathe afterwards, as one of the drugs can accelerate skin cancer. So factor 60 the whole way is for me the future and she always looks stunning in her floaty clothes ad I've always rather admired her look.
Perhaps I should wander around calling everyone darling and flirting outrageously...Ooo I do that already!

So all in all, a good day. Tomorrow I can be released out into the wild again.

Lots of love Debbie x

The Cursed

I am one tired bunny today who is fighting off a heavy cold. To most people who have a cold, it's a not a very nice inconvenience, but with me... it wipes the floor with you, as well as fills your oxygen nose specs up with a runny nose.
I guess the standing about in the rain on Tuesday night, talking to the police about my car accident, hasn't actually helped, but there are lots of colds going around.
A bit naughty, but I did go out last night I admit, but I have had this booked for ages and I wasn't going to let a cold stop me. I will no doubt find out if that gun ho attitude has landed me in trouble as the weekend goes on.

The night out that I had planned was attending 'The Cursed'. A Halloween evening event held at Cressing Temple where I used to work as a Tudor Goodwife many, many moons ago. And believe me, when locking up the 11th century barns on your own when the sun was going down, it was a pretty 'hairs standing up on the back of your neck' experience at the best of times!
Anyway our gang of merry men and women set off with me doing a pretty damn good impression of 'Fungus the bogey man' with the amount of snot I had up my nose I hasten to add, but luckily for me and the event, it was very mild and dry while we were queuing at various checkpoints.
If you haven't been this year, please go next year as I kid you not...it's a very different night out.
You have nine different mazes in total to find your way around and all you can hear once you enter the site, is young ladies and probably older ones too, screaming their socks off. My personal favourite scream was the one where you heard a scream which tailors off into a scared laugh straight afterwards. This is where they are trying to be brave in front of their friends and are shocked that they got so spooked.
Believe me, some of those mazes were really scary.
You'd look one way, because you were convinced that you could see something on the other side or running away in the darkness, only to have a shutter snap open behind you and a head pop out shouting 'get out!' or manic laughing in your ear.
I apologise now to the good person who will get my heart when this transplant goes ahead, as I certainly put it through it's paces last night, so they are getting a good strong one! I actually leaped up in the air doing a strange little dance, quite a few times.
And it was very hard for someone like me who normally swears like a trooper when stressed, but was on their best behaviour as there was youngsters there too...what kind of parent brings their young children I ask? If they have to wash their children's sheets for a week because the children has peed in them each night, well I think that's revenge on their parents to taking them to some where like that in the first place... Anyway I diverse again, where I would normally say something rude, I found myself saying 'Oh I say' or 'Deary deary me' or if very frightened it would be 'Ooo hello!', but somehow that didn't actually cut it.
Julie did get told off by a dead asylum inmate for swearing, which made us all giggle like naughty schoolgirls, until the next beastie jumped out at you! I am so glad that Julie wore her extra large Tenor Lady, as she has an extremely weak bladder at the best of times. I don't call her the snail trail for nothing!
I was very naughty at one point... when what seemed that we were surrounded by the walking dead and they seemed to making a bee line for me... and that I yelled out 'Don't hurt me, I'm a raspberry ripple'. For those of you unsure what that means, google Cockney rhyming slang.
Anyway, I do believe that I heard a couple of the undead, giggling in the darkness!

So today, I've been resting up and staying indoors. I have to get rid of whatever is brewing inside me, so it's now me time.

Lots of love Debbie x

One in one out

I played hooky for the first time tonight from my course on the 'Boadicea Uprising'. I have been enjoying it honestly, but tonight I was just too tired to concentrate and the speaker does have heavy pregnant pauses which could end up being one pause too many.
I think the week's course of events has finally caught up with me and my brilliant idea of having a hot bath to both warm me up and wake me up, back fired and made me even more sleepier. In fact I fell asleep in the bath and then again on the sofa for a good hour after my evening meal and I'm still yawning.

I had to be under house arrest all day, as I had to wait for the guy to service my oxygen concentrator, then the gent to collect my car and then have a damn good pummelling from my physio Hannah.
It wasn't a bad thing staying in today, as I actually got quite a few tasks done around the house and a lot of my recorded TV watched, including the 'Time Team Special' on their version on the Boadicea uprising...bonza! Hopefully I won't feel a div next week.
Plus I feel as if I've got my plate spinning act nearly under control now, which is a jolly good feeling and means that I can relax a bit now.
The oxygen concentrator is running well now and he removed my old tubing which was getting very grubby and tangled and replaced it with another 15' to fall over. I seem to be more klutzy than usual, probably because I'm so tired at the moment and I have been getting really annoyed again with all the tubing. I don't think you ever get used to having that trailing around behind you all the time.
My poor car went off safely to the garage to return soon I hope. But being the innocent party in an accident is a costly business paying the excess for this and excess for that. I'm jolly glad that I have a little back up money, as if it was just down to my pension, I would be scuppered.
I did go out in the hearse again after all my callers had gone to get my mother's magazines. I'm thinking little journeys to get used to the beast, but if I ever get the hang of this button for a handbrake business, it will be a miracle. I sat outside the Coop for ages trying to get the damn thing off to drive home again. By the time I get used to it, it will be time to give it back!
I haven't plucked up courage yet to tackle the roundabout yet, after all that's where I got hit in the first case and that was when I was confident in my own car.

I watched 'Big Brother' tonight while I've been awake at least and not for the first time I have been shouting at the TV. At least it woke me up a bit. I thought I was a diva, but blimey o'reilly, those two sisters are a non stop royal pain in the bum. How does that Aaron keep getting the blame for their hot and cold moods? I know he's a bit weird, OCD and totally like an old woman, but the two sisters are really mind warping. I'd hate to be in their house for Sunday lunch!
Still it makes good watching and it makes me feel that I'm a really easy going compared to them.
Actually, I think I'm quite nice!

Lots of love Debbie x

Wide load coming through

I am now officially driving a hearse...well that's what it seems like. The insurance people have very kindly let me have this very long car while mine is being repaired and although I've never driven a hearse, I'm sure it would seem just like that.
It's huge!
It's seems nice though so I can't complain, it's very posh inside and I think it's posh on the outside, but it was too dark by the time it was delivered to see to be truthfully. I know it has a lot of scratches on it, as the form that they give you when they had it over to you, has 36 scratches and 2 dents registered on it...and none done by me...yet!
I must stop making jokes about situations though, as when I saw this 7 seater beastie, I said that I could become a taxi driver and I got a 'I hope you are not serious,' glare by the delivery driver.

My lovely little car...which felt quite big itself until I drove this mumma tonight...is being picked up tomorrow to be taken away to be repaired back to it's former glory and it looks so sad as it tilts to one side outside my bungalow. I will be so glad to have it returned safely to me again.
I did feel quite emotional first thing when I had to contact the insurance company and sort everything out. The stress of all the paperwork, came rushing up to the surface again.
I have to blow the trumpets for the Royal Sun Alliance who deals with Motorbility, as they are really fast workers and make it all smooth sailing, but I did shed a couple of tears before getting myself together enough to call them.
Weird though, as I wasn't expecting to feel tearful like that.

My brother-in-law had to come to my rescue yet again and take me to see my specialist today, as of course sod's law, I had an appointment at Broomfield hospital for today.
I explained to him on the way to the hospital and earlier, the insurance people that my main worry was, that I would get 'the call' straight away for the transplant and I would be laying prone in my hospital bed under mega sedation and the insurance company would be ringing non-stop thinking that I had done a bunk with their car and the garage would impound my car!
Luckily I was convinced in the end, that wouldn't be the case.

The specialist seemed pleased to see me and said that everything seems ready to go at Papworth, plus when he said that he looks forward to meeting me again afterwards, I have to admit that those words were very reassuring and music to my ears.

I got to admit as well, that all this waiting about for various companies to call, has helped me to sit down and sort out my never ending piles of paperwork into nice manageable piles.
Hoorah...there is light at the end of the tunnel!

P.S Thanks Sal for your lovely words xxxx

Lots of love Debbie x

Big Top this way

Blimey O'Reilly, when I was at work I would say on a busy day, that I was going to run away and join the circus, but hey I was already in one then!
But the last couple of weeks, I've felt like a juggler or a plate spinner, trying to keep the all the plates spinning at the same time, but having to spin one a bit and then run to the next plate to spin that a bit, and then back again to the first and spin that a bit more etc.
In real terms this means, sorting out my paperwork here, writing letters, sorting out mother's paperwork from the social workers, county council finance and her blue badge parking ticket, writing out instructions for Oliver for when the call comes, making sure mine and mother's freezers are full and the list just goes on.
Now I have another thing to add to the list... Having my car fixed after some young lad crashed into me tonight after waiting in a queue to go on to a roundabout.

No, I haven't gone out looking for a donor for myself, I was just minding my own business and on my way to the cinema with the girls and strangely enough we were moaning about the bad drivers on the road, not indicating etc as it was raining steadily now and that seems to bring out the worst in drivers.
I had just pulled up slowly behind a car who was waiting to go around the roundabout and thud, I guess the car behind me didn't want to wait in turn!
He said in his statement that he hadn't noticed that I had slowed right down and when he put his foot on the brake, the breaks locked and he skidded into me. I think this might suggest that said laddo was travelling at a bit of a speed don't you think?
He was only 17 and he said it wasn't his first accident either, and I have a sneaky feeling it won't be his last either. He did look really shocked and white as a sheet the silly boy.
I think the worst thing for me was having to do a breathalyzer, not only because it was humiliating standing on a busy road side with cars driving past you gawping, but because I struggle to blow out for any length of time for the obvious reason that my lungs are kaput and bringing up mouthfuls of phlegm as a result on the nice policewoman's tube!
I know both drivers have to do it by law, but really how embarrassing for the innocent party i.e. me.

So now, I have to try and get all this sorted out by 11am tomorrow with the insurance people again, as I did speak to them earlier to ask their advice on what to do, and get my car taken off to be fixed and hopefully a courtesy car brought to me, so I can then go off and see my specialist for my three month check up as planned.
I wonder if I should just surrender and wear a big red false nose and a big blue curly wig and be done with it, as my life is one big circus at times.

Lots of love Debbie x

Doesn't time fly?!

I swear there is not enough hours in the day to do everything that needs doing. Goodness only knows how I ever worked as well.
Hard to believe that come the end of this month I wouldn't have worked for nearly a year. Where has that year gone I ask?

Probably if I was up and dressed by 9am each morning I might get a bit more done each day, but I like my mornings to start slowly now. I can't see what the mad rush is to start housework can you? It will be there long after we have gone. Besides I haven't sat idle, I have completed a fair bit through out the day today and now I'm shattered.
I think I will have to have an early night tonight, as I just fell asleep on the sofa!

I don't think I actually helped myself by doing a full rehab class without my oxygen pumping up my nostrils. Somehow I had either not turned the oxygen on or caught the button, just shows that my brain is a wee bit skittish at the moment. But either way I did think I was suffering while doing my exercises even before I realised my error. However once I did and owned up to Hannah, I was made to sit down quietly as my heart rate had gone sky high!
Ooops.

I suddenly realised today, that once I get rushed in to Papworth and if the transplant goes ahead, it's going to be a long while before I actually step foot in my bungalow again. I can see now why they said to spend the time getting everything sorted, as I've found today that I've been making lists nonstop. My head is starting to spin now.
I thought the hardest thing was this conundrum of trying to stay positive about the transplant working and getting past the five year mark, while having to sort everything out in case you snuff it! Now I have the extra worry of making sure that everything that needs doing in the bungalow, bills paid, housework all up to date and tidy, deliveries to be paid for and when they are due to arrive, lists of phone numbers for mine and my mother's well being, as we all know that I'm her PA! Are all written down ready for Oliver, Reni and my ex, who will all be looking after my bungalow, to swing into action!
Good gawd all this worrying is a full time profession!
I must go to bed now and tell my Mexican worry dolls some woes... poor little things, I can see their box shaking now!

Lots of love Debbie x

The busy season

I have returned! Have you missed me?
I've been a busy little beaver trying to sort all manner of things out these last couple of days and I thought you'd be bored rigid listening to me bleating on about social workers etc.

I spoke to Papworth on Friday afternoon, after I had nearly chewed down my finger nails to the quicks as I hadn't heard from them. Oliver, my wise son, told me just to bite the bullet and call them if I couldn't remember what the coordinator had said the previous week.
To be truthful, I was driving when they called me and before anyone reprimands me for talking on a mobile whilst driving, I was on speaker phone! But I had gone into a bit of panic mode, where instructions were going in one ear, but not hanging about and escaping through the other.
This coordinator I had spoken to originally, so I was a bit calmer when she was telling me what was happening.
Apparently, they quadruple check every detail and there was one person still left to check, so her advice was to use this time to tie up all loose ends because it will be this week coming that I go active.
So that is what I have been doing. I've been finishing off goodbye letters to my sons and other people who are close to me, just in case I join the percentage that don't make it through the operation. I've been trying to work out what bills have to be paid by me direct. Sort out my mother's social worker to make sure that they don't cart her off to a home while I'm in hospital and then sort out how I want my funeral... just in case.

I've still got a couple of letters to write, but my boys are finished and it wasn't too sad writing them as I was trying to make them laugh when reading them. Writing 'good bye' at the end though did rather crumple me, but I needed to get them written and sent to Derek to print off.
My monthly bills that I pay by phone are all sorted and the rest I pay by direct debit. I do need to write down who is what service though.
Mother's social worker has closed the case as he couldn't promise me that they could keep her in her home and no way am I having her carted off against her will. I don't think he was very happy that he had done all this work and then I had pulled the plug, but my family will have to sort it all out and if it's six foot of snow and no one can get out to her, well then he said I could reopen the case.
My funeral, well that will have to be a sit down and jot everything down for a master plan. I'll tackle that tomorrow and ring up Collins the undertaker.
I know what I what. The cheapest box going as it's only going to be burnt or even a cupboard eco friendly one, that would be nice. The slow Jakatta song going in and the more funky version coming out. White flowers only. 'Make me a something of your love' sang in the middle...I'll have to find out the proper title. Knees up round Julie's... sorry angel, but you do the best parties! Ashes to be spread out, so a handful at Hastings out at sea with my dad, a handful overlooking the fields and church at Rivenhall and the rest to be sprinkled at Oludeniz in Turkey and around the neighbourhood. I've always been an awkward bugger so why stop being so now!
So if I don't get it written down properly, then my friends will know roughly what to do from this.
Simple!

I took mother back down to Maldon today and we stayed for ages, mainly as I met up with a friend and we had a good old natter. Then we watched the big boys, other known as men, who come racing their remote control yachts every week.
I couldn't help but wonder as I sat admiring the autumnal colours and blue skies, if like the seasons, was my life in it's autumn phase? You could make conparesions to me getting things ready rather like the farmer's getting their fields ploughed ready for their next seasons crops to grow and all the old leaves are dying off the trees rather like my body is shutting down.
And then winter could be when I have my transplant which will be when I'm resting and gathering strength while out for the count a bit like the season itself when it looks like it's sleeping under the snow, but all sorts of wonderous things are going on. Of course we'll have a jolly part in the middle where the transplant is a success and people celebrating a bit like the festivities at New Year, bringing me presents... hint hint! Then more resting thrown in with a bit of growing.
Then come spring, my new life will be forming just like the new buds and crops? Wouldn't that be wonderful if it did all happen like that?
Makes yoy think doesn't it? Or have I been taking too many drugs again!

Lots of love Debbie x

A traitor in my mother's midst

Oo there was tears before bedtime today. Well actually there were tears within an hour of getting up out of bed to be more precise!
I had a gentleman around from the Essex county council first thing to talk about my mother's emergency care package and it all seemed to be going well, apart from a slip up that my sister had made where she had overlooked declaring a tiny pension of a £100 a year, so we got that sorted out straight away. But everything else was fine, all the information was there and given, no nasty surprises until right at the end just as he was doing his summary before leaving, which is where the crying started.
The gentleman showed me how much money we would have to pay towards...when my mother goes into a care home while I'm hospital!
My face must have told a thousand words, as the one thing that I had been trying to do which was keep her out of a care home, and I seemed to have inadvertently landed her in one.
'No no no' I cried 'Back up please, what the hell do you mean by that?!' as that was not what we had been told in the first place by the social worker . And although he was trying to tell me that this was only in case they couldn't get the carers to come into her bungalow, I was so distraught by this time and had visions of mother being carted away against her will.
I tried to tell him that A)she would be very distressed anyway when I have this transplant. I know she doesn't understand why and what's going to happen and to be honest, I want to spare her the full answers B) put her in a home when she is upset already and she will deteriorate rapidly and it would be my fault.
So I did what I do best and that was to start blaming myself, because I need this bloody transplant in the first place, so therefore everyone else is suffering because of me and it all came gushing out, all this pent up guilt.
I don't know who was more scared me or him!
It ended with him assuring me that she wouldn't be taken away and me assuring him that I would phone up the social worker tomorrow and cancel the whole bloody thing unless he can assure me: absolutely no home!
I now have a back up plan and luckily my sisters and brother have stepped up and said that they would cover the days when she doesn't have the carer and the cleaner going in, plus we can up the times that the carer goes in and I'd ask my ex to pop in and check on her too with bits of shopping. If it isn't snowing when all the kicks off, then everything should go to plan. If it snows then she will have to stay with one of them or someone stay with her.
Simple.
I now feel drained and feel so awful that my desire to live is causing so many bloody problems.
Every time I looked over at my mother's bungalow today, I felt such a traitor. And while we were playing scrabble this afternoon, I was pleased that she won both times as she really brightened up.
Serious chat with the social worker tomorrow me thinks.

Lots of love Debbie x

Woman overboard!

I was going to do so much this morning, washing clothes as it was a good drying day, ironing my sheets that have been in the ironing pile for about a week tut tut, tidying up etc, but the time and my energy just ran away with me.
Getting up, getting dressed and getting my drugs done can sometime take an age and today was one of those days. I did stick the washing on before running my bath, but it was on of those mornings where I would do a bit, then sit down, do another bit and then sit down some more and so on. I had to have that bath so I could legality have a lie down again!
You get there in the end and there is no point in hurrying and making yourself feel even breathless, so you just take your time and go with the flow.

There was a cold wind again which is a nuisance as that does take away what breath you have left, but I have to get used to it again, as there will a lot colder and windier to come in the following months.
Actually by the time I had eaten lunch, my energy levels were on the up again, so the hare and the tortoise routine paid off for me. I had a little snooze after lunch and then felt regenerated enough to take my friend up on her kind invite and go for a swim at the health club where she is a member.
I was interested to see just how many lengths I could do without my woggle, as in this pool you can touch the floor where ever you stand. And yes it showed that the woggle does help me a lot of the work as I could only do seven lengths before throwing in the towel...figure of speech, as I don't mean throwing the towel in the water as that would be very silly of me!
Mind you, I might have been able to do more if I hadn't felt so washed out this last two weeks, so who knows?
The lovely thing was, that this health club has all the trimmings. A sauna...which was acutely hot and ouchy on the floor, so I ended up doing an impression when trying to get out again, of Dudley Moore in that film called '10' with Bo Derek, where he is trrying to walk on red hot sand! I swear that my feet sizzled when I went under the shower.
They also had an aromatherapy room, which was very calming under the twinkling lights. A steam room which I just love, as it does help me breathe a lot better. A pool with squirty things to stand under to give your shoulders a right old pummelling and some bubbling seats to sit on too and of course the jacuzzi.
Had a few problems in there as I wore my swim dress... as I haven't got it into my head that I have lost over a stone in weight and still want to cover myself up... and I did a rather damn realistic impression of someone trying not drown at sea. My swim dress got the better of me when I sat down and filled up with air from the all the bubbles, rising up around my neck like a huge buoyancy aid, and then it kept trying to tip me over backwards while I was wrestling with the dress to try to get it under control. Damn that water stings your eyes! The group of men in their late twenties, early thirties who were all sitting in the jacuzzi peacefully before we got in, must have thought it was some sort of wind up TV sketch by the looks on their faces!
Slightly embarrassing to say the least and I was not the most elegant bather there that night.

We decided to go and have something to eat before leaving and ordered a healthy trout dish for our main course, skipping the starter and then it all went slightly awry. I thought I'd have a 'bailey's creme brulee' dish as being it a arty farty cuisine restaurant, it was bound to be served in a tiny ramkin size dish.
Wrong, very wrong.
The dish was like a piece of guttering and was at least a foot long and a good spoonful wide, full to the brim of this very sweet mixture which is bound to have me bouncing off the walls tonight before bedtime and the stone I've lost, will back on!
I didn't eat the last two inches of it, as by then I was beginning to get a headache from the sweetness and I knew I wouldn't be able to handle the guilt trip that would follow me home.
But all in all, a really lovely night and I'm jolly glad that I didn't give up this morning when I first woke up feeling so tired again and call it off.
Time for bed... if the brulee lets me sleep!

Lots of love Debbie x

I surrender

I had to admit defeat today and call off the 'Enablement Team' for mother, as having all these strangers going round was really beginning to freak her out. When I spoke to them on the telephone first thing, they said that they would still have to go round to sign her off, but I thought it best that I stayed away and let mother talk openly to them.
She was getting up early poor thing and washing and dressing, so they wouldn't make her do in front of them, so it really was defeating the object. My mother is a very proud lady.
After going round a couple of times yesterday and each time watching her looking for a piece of paper that she had written on, I got quite worried that the stress was pushing her close to the edge.
Naturally her social worker rang up with 'good news' that he had managed to get her a place in a day centre, which is what she wanted a couple of weeks ago. Now it was a case of wrong place, wrong time for that as mother would have thought that there was some conspiracy plan against her, so I said I'd let him know on Friday. But I think the answer will be that she's had one too many changes this last couple of weeks, so maybe wait a while. I do not want to be the one who puts mother over the edge!

I had rehab today after seeing an old friend for lunch at hers, which was very nice indeed to catch up as we were quite close many years ago.
Glad we had eaten early though, as when I got to rehab I had two members of the team peering at my phlegm to see what colour it was this week. I had caused some concern last Wednesday as my nose was really blocked, I felt washed out and my phlegm was a gross colour of green. Yuk! I'm happy to report that this week it's still green, but a lot paler green.
Blimey I thought my old job was tough!
My stats were quite low though and I had a storming headache by the time they had finished pummelling me, so after my evening meal I did catch a few Zzzs.
The weather although bright today was quite chilly and the combination of being beaten up, a lovely mock roast chicken dinner and my central heating being switched on for a while, just had me curling up on the sofa for a nap.
I might actually get my patchwork quilt that my sister made for me out from the airing cupboard where it was stored for the summer and put it back on the bottom of the bed again, just because my feet were freezing at first last night in bed.

Been reading more of my paperwork from Papworth today and found a piece in there that I couldn't remember talking about at the assessment and that was when I'm released from the ward, but before I go home, I have to stay in a flat that they provide so I'm close at hand for blood tests and to show that I'm coping.
When mother was asking how long I'd be in hospital, she was dismayed when I said up to three weeks, how she'll cope with that news is any one's guess. I think reading the paperwork, I'm looking at a 4- 5 week stay all in all. Blimey. More things to panic about! I'll get someone else to read it and see what their understanding is of it, but there's no point worrying, because it has to be done and that's final.
Having this lack of energy and quite strong winds to battle against, only re-enforced to me just how wonderful it will be to be able to stride out normally again.
That day will come.

Lots of love Debbie x

Nearly back in control

Luckily today my head seems to be a little less foggy and I actually seemed to be thinking a bit straighter then I have been.
Whoa... I really did feel that everything was running away from me and out of my control yesterday. For a control freak like me that is not a good feeling. Plus I didn't know where to start on the mountain of paperwork that I had begining to pile up for mother and me, it was on the table, on the floor by my sofa and on top of the microwave, everywhere.

Late last night, I made a start as I was so cross with myself for watching dross all night on TV rather then settling down and getting on with it.
I opened the letter that given to me from Papworth which turned out to be from a research centre in one of the universities wanting to do a trial on my blood. They wanted samples before and after the transplant to study the development of autoimmune responses. I know that I should say yes to it, as if it helps save lives and doesn't run any risk to me, then why not. But half of me thinks, that my veins are so crap at getting any blood out of them, that do I really want the extra stress afterwards? I think I need to talk it over with my sons first.
But today I knuckled down and made a real stride forward to getting all my tasks licked.

I updated a goodbye letter for one of my boys and started updating the other letter for my other son. It wasn't half as sad as the first time that I wrote them, which was about five years ago, in fact it was really lovely and warming when remembering all the funny stuff and their little quirky ways. The only part that made me cry, was when writing 'good bye' right at the end and that was accompanied with a feeling of an ice cold dread in the pit of my stomach and a real pain in my heart, the same as when I thought I'd lost them on a crowded beach or having operations when they were little etc.
Whenever you die, it's not going to be easy peasey is it, but at least I have the luxury of writing letters just in case the transplant goes pear shape. What is it girls guides say...'Be prepared!'

Anyway lets not dwell on that, they have to be written and it never was going to be easy, so deal with it girlfriend as my gay transvestite friend would say.
My second task of the day which wasn't going to be easy either, was going back to rehab after a week off. All last week I had been feeling so tired, completely the opposite to how I felt the month before going in for my assessment. Blimey before I went there, I had so much energy that my 'go faster' trolley needed a air cushion attached to it as I was moving so fast!
But was I soon got back into the swing of rehab, it was a really good feeling. The rivalry came back as I wanted to match the other chap who was also doing four minutes, especially when the class fool kept egging him on by saying 'come on mate, you can't be beaten by a woman!' My determination came back thrice fold!
Plus it must have helped with my weigh in, as all week I have been stuck on the same weight as last week and in the final hours, I lost a whole pound. Excellent.

So I had a toasted goats cheese and ham sandwich to celebrate. Blimey I know how to live!

Lots of love Debbie x

Wanted one PA...pronto

I swear that I have sleeping sickness as I have felt so drowsy and lethargic all day, well for the last few days actually.
When the alarm went off at 8.30am I just kept resetting it as I had real problems keeping my eyes open and kept drifting back off to sleep. I thought a bath would help wake me up, but I fell asleep in that too!
My throat is still scratchy, but that's probably my fault because as soon as it stops feeling so scratchy, I stop putting the gel on my tongue. But that gel really unsettles my stomach when I swallow it and if it goes on your tongue, you're going to swallow it aren't you.
I don't think I've done very well on my diet this week either. Not because I've been cheating, but just because I've felt nauseous and bloated all week.
Ann thinks there is something going around at the moment, as we've both felt yucky and you can't really put your finger on why you feel so yuck either.

This week I've got to get down to making sure all my affairs are in order before Friday in case I go active.
I have letters to update in case things go horribly wrong and that I'll fall into the category of the 45% who don't reach the five year mark or worse in the 15% to snuff it in the first year.
I also really need to sort out getting a will made up, although I've got sod all to leave, mind you Julie has requested my silver Turkish lamps!
But I hate form filling and I already have a pile sitting on my dining room table to do for my mother for the benefit people whom I meeting on Thursday and I have to take mother to get a photo taken for her blue badge renewal form.
I have a habit of delaying jobs that I don't want to do and official paperwork is top of the hate list for me. I need a PA!

Even another beautiful day down at Maldon didn't help distract me as much today. I did think about taking it all with me to do in the car, but it's hard to concentrate when mother is battling with a prawn mayo baguette next to you.
I had a walk along the prom to blow away the cobwebs and it was lovely, but between wanting to fall asleep every five minutes and feeling a failure because I really knew I should be doing some constructive form filling, I needed a very strong gale to deal with that lot of cobwebs!
It didn't get much better when I got home. I did get the paperwork out ready and read through it all again, but then I fell asleep and I kind of lost the incentive to do it.
I know that I will lay in bed awake for hours tonight, because I'll be worrying about it and cursing my stupidity for putting it off, plus I have a busy week ahead with hospital etc.

I'm talking a load of rubbish today aren't I? I must try better will be my motto of the week.

Lots of love Debbie x

A smile a day keeps the bogey man away

Well another Friday has passed and for the second time there hasn't been a phone call from Papworth to say all the tests results are sorted and that I'm now on the active list.
How do I feel about it?
To be honest I don't really know.
After spending those three days there, I know how crucial it is to get everything finely tuned and all information exactly right, after all my life depends on it. But I have a sneaky feeling that this will be the first of many set backs on this next part of the journey to getting my new lungs. So you could say that this is my apprenticeship.

I'm rather glad that there has been so much coverage on TV about transplants these last two weeks, as I'm hoping it will stop people asking me or at least make them think twice before asking 'so when you get your new organs?'
I know that they are all genuinely kind and interested my health honestly, but perhaps people think that you get issued a ticket and that transplant hospitals are a bit like the waiting room in the film 'Beetlejuice.' And when it's my turn they would yell out 'would number 1,483,19 please come in!'
I know I was pretty ignorant about transplants, but even I knew that it wasn't a case of popping into hospital and going 'Ooo I'll have that pair please!'
People look at you when you say no, as if you are a fraud because this has been going on for so long. Sometimes it's on the tip of my tongue to say, 'well actually, see that young woman there? well if she would just hurry up and drop dead, then I can have her organs.'
Can't see that going down well, can you?!

I suppose not receiving the phone call to say I've gone active, gives me more time to sit and watch a film at the cinema without worrying about could I get from my seat to the double doors before they hang up? Or having to text my daily movements to my boys just in case I forget to take my mobile with me when putting out the recycling or something trivial and miss the hospital calling me.
I've found since I've been assessed, that all my energy seems to have been sapped out of me and that I feel like a wet rag that's been put through the mangle. I just want to keep falling asleep all the time. Where has all that new found energy of swimming and weight lifting that I had before my assessment gone?

I did go walking today with some of the girls from work, as we met up for lunch at Maldon... I know, I know, I'm stalking Maldon! But believe me, you couldn't have got a more stunning day. Typically for this time of year, brilliant blue skies without hardly a cloud. Not typical though, real heat on your face today from the autumnal sunshine. Us girlies sitting chatting non stop, but still watching the barges getting ready to sail off along with the rest of the busy river life on the high tide, as we ate our lunch al fresco style...how wonderful is that for October. Hopefully days like this will make the winter feel shorter.
It's really weird, because it seems only a few months ago that I finished work, where in fact it will be a whole year next month! I look so different to how I looked at my leaving do, my face bloated and looking mottled from taking steroids and I was so overweight. In fact I looked and felt bloody awful!
I do still miss working with the girls, although I see the ones that are really close to my heart all the time. I really loved working there, but as I sat there today listening to them, I picked up on a real sadness in their voices and realised just how much it has all changed there. Their moral seemed so low and I was sad when I remembered just how many of my old work friends have already left in this past year or two.
I'm really glad that I have left as I would have probably been sacked for asking in my un pc way, what was going on if I had stayed.
Like so many work places now, the girls have given their all for so many years and I can see many more of them leaving either through upper managements choice or them feeling that they have no choice.
No one is anti change, but you do have to know why, don't you think?
I just hope that when the upper management move on and up the ladder, that they haven't lost too many good people on the rungs as is so often the case in business.

The world can be depressing enough, so please don't lose the personal touch folks. I was always told when I was a child, to smile and say hello to old people, because that could be the only time that some old people would get spoken to that day and a smile doesn't cost a thing does it.
This isn't just for old folk, but for everyone be it at work, at the supermarket, at the bus stop, or even at a traffic junction, anywhere in fact! So go on try it, because if you get a smile back, it really does make feel lovely.

Lots of love Debbie x

A little bit of a rain check

Is it just me, but does it seem that when something major is happening in your life, that everywhere you turn you are reminded of it?
When my dad died, every book or magazine that I picked up to read or everything I watched on TV, even the comedies that normally had me laughing my head off, seemed to be about death.
Now it's all about transplants.
Every week for the last three, there has been a programme on about either kidney or heart transplants starting when I was in Papworth for my stay, but I wasn't brave enough to watch it then from my hospital bed on the spanking new LCD TV in my room.
Tonight though I gave it a go and yes my bottom lip did tremble quite a bit.

I know that they are trying to push the whole idea of more people signing up on the donor register, as there are not enough people out there doing so. And with the obesity rate going up, there will be more heart failure and a heart from an obese person won't be fit for man nor beast.
I'm on the donor register as there are plenty of bits of me that they can use apparently. I thought at first it would just be my skin, but the surgeon who will perform my transplant, said that wasn't the case.
I don't know what other people believe in, but I believe that my body is just a human shell that gets left behind and the vital spark from it goes on living. I honestly believe that my soul will be looked after.
After all if you don't believe in God or a higher being and that there is no such thing as a soul or that it's a sin not to go on without your body complete, then why not get yourself registered to donate your organs?
Is it just laziness? Or don't you want to do something really wonderful and give the gift of life to someone else? Or is it God forbid a case of 'well I'm alright Jack?'

When I sat watching the programme, the part that got to me was where the gent who had already been disappointed twice already where the donor heart wasn't any good, was laying there all on his own waiting for the verdict of whether they could use it or not.
The stress that poor man must have been under.
They said on the programme after the last time the transplant was called off, they were worried about the fact that he had retreated into his shell. I can understand him doing that, as I wanted to hide from the world the Saturday before going for my assessment.
Can you imagine the thoughts that were going through his head that his last memories if he should die, would be that of being in hospital for six weeks? At least I will be at home in my own surroundings if or when I get the call.
Then when the verdict for him was a yes and it was a green light to go, my heart went out to him as he was trying to calm himself down.
I was told that at Papworth, that they like to take their time prepping you, but sometimes when time is of the essence, it's all systems go and for not for the first time, I decided that I'd like the all systems go approach so I didn't have time to think.
In a very strange way, I'm glad that I sat and watched this programme even if it did make me cry, as not for the first time I had worried that I was too calm and matter of fact about this whole transplant procedure.
Also the young lad that was on the programme, echoed a lot of my feelings of that I didn't feel ill enough and that they'd think I was a fraud. Which is ridiculous for him and me saying that, as we are very ill and but I think we have just got used to feeling like it and moved on.
Perhaps both him and me will wake up one morning able to breathe like normal people and have no pain anywhere and have the energy to feel like whatever normal people feel... how lovely would that be?

So I do hope that these programmes help.
Please if you are not on the register, please think about it. Just type in donor in your web search and I assure you that if the time ever came, you'd never ever be forgotten on this earth especially by that person and their family for your wonderful gift of life.

Lots of love Debbie x

Another box ticked

A better start to the mornings proceedings today. Mother was still laying in bed when I went round to hers to meet the lady from the 'Enablement' team, so I had to chivvy her along and make her breakfast and some for myself too before the lady arrived.
I must say I was impressed with her and her worker. I felt a little remorse for moaning at her yesterday and even mother was quite amicable with them, though how long that will last I'm not sure, especially when they said they'd be coming round every day for six weeks. I did notice that mother's hearing had suddenly got better at that point and she mouthed 'six weeks' at me with a grimace!
I guess I won't be flavour of the month at the end of it!

The rest of the day I took it easy, as my throat was still feeling scratchy and my tummy felt a bit upset from having to swallow the ointment gel. In fact I felt quite nauseous through out the day.
Still I'll live.
Papworth returned my call today and advised me that they had received the paperwork from Broomfield re my reflux examination, but no paperwork from my doctors as yet. Perhaps I should have bit the bullet yesterday and asked her when I was in her surgery room?
They also said that they were still sorting out my anti bodies so they'd know how to treat me afterwards, but asked if I was all packed ready, as they would phone me as soon as I was on the national register which wouldn't be long.
She sounded really excited and that did rub off on to me a bit again, although I do get very warm every time I think about it.

This call came as I was driving to have my physio done at St Pete's, so I was able to fill in my team here with an update too.
I explained why it had been suggested that I should have a double lung and heart transplant after all, which is so I could donate my heart to an 'O' blood group recipient and get them off the list too.
I told her that it feels like I'm going to a rather bizarre bring and buy sale!
Tracey knew some of the team at Papworth, which somehow made me feel more at ease and a bit more at home about it all. Like having a kind of safety thread running between me, my team and Papworth, if that makes any sense? Probably not, because it doesn't make a whole lot of sense to me even!

Julie has booked us all tickets to go to the Halloween special at Cressing Temple. It is a maze that you have to walk through and get scared witless by strange people in costumes. I have been to a couple similar when I was fitter.
One in the Trocadero in London, which was called the 'Alien Experience' which was based on the Alien films that were very in about twenty years ago. I went to with both my sons as we were all big fans of the films and by the time we came out of a side door onto the street, we were so hyped up that we really thought an alien was after us!
The second time was at Madam Tussuad's when Reni's family came over to stay and we did the sights of London with them. This one held there, was based on the streets of London around Jack the Ripper period. Some actor chap came up behind me and started smelling my hair and I swear I nearly wet myself there and then with fear as that was so freaky!
Mind you I was equally as freaked when Reni, her mum and myself got talked into doing a Bollywood dance with some dancers there. All went well until I went on stage and realised that Reni and Ana had sneaked back into the audience watching little old me all alone with this dance troop!
So lets see what lies ahead of me that night. At least I know my heart is strong so I'm unlikely to have a heart attack there!

Lots of love Debbie x

Pay attention pleeeeease

A bit of a rude wakening this morning and I know 8am isn't early for most people, hell I used to be sitting at work by 8am and sorting out all sorts of problems for the students not that long ago.
But now I'm entitled to a lie in.
Unfortunately no one told the lady from the Enablement team regarding my mother.

I don't know why I even bother giving information to people at times, as they never seem to listen. I had asked mother's new social worker to tell other people on his team to make sure that all first contact is with me and when making appointments to come and see her, as mother gets easily confused. And I know he actually wrote it down on her file, so someone wasn't paying attention when reading the file.
So of course what does the woman do, ring my mother before 8am to say she's coming round to see her in a couple of hours! Poor mother, was fast asleep...I take after her of course... and she hadn't a scooby do who this woman was, where she was from, or why she was coming and then had to get out of her bed quickly and go and get my phone number to give to her.
Why do we want the extra help when I go into hospital? Because she is wobbly first thing in the morning!
I refrained from calling the woman what I really wanted to call her and told her to come tomorrow as my mother was probably upset now and would not be at her best.
It's hard enough her having to come to terms of her youngest child having to have a major operation. A double lung and heart transplant too hard for her to comprehend so I try and play it down, but she gets upset having all these different people coming round as she knows the transplant is getting closer and it confuses her even more.

Later that morning I had a date with one of the local doctors to update her on the Papworth situation and to try to find out why my throat was still feeling scratchy after the last test at the local hospital.
Simple answer; I have thrush in my throat.
Probably where I'm not drinking as much water as I normally do especially after taking my inhalers and vent stream. It happens every now and again so it's no sweat.
I wasn't expecting to be told off though for not taking my statins even though she was going to take change them as that could be a side effect.
I explained that she told me to stop taking them if they gave me any troublesome, as did my specialist. In fact they all said that I was only marginally over the limit anyway and I could get it down by exercise and diet.
Err hello, I've lost over a stone and regularly swimming etc!
I didn't ask her if she had sent my smear results to Papworth as asked, as I got the distinct impression that her day wasn't going quite the way that she had hoped for when she woke up!
Take my gel, smile sweetly, promise never to do it again and go, I think was the best plan.

Not a bad day actually today, as sometimes you need something to fight for and mother was my cause. And sometimes you need to know when to bow out and try another day, and that was my doctors.
Spent a nice afternoon with mother playing scrabble. It helps to keep hers and my brain ticking over, plus it's getting cooler out outside now, so scrabble is a nice gentle way to past the time. Well until she cheats of course!

Lots of love Debbie x

Wanted: A female spy with own set of wheels

Went a bit stir crazy today, as I had to take my car into my garage to be serviced and ended up sitting there for three and a half hours. Fair play, as I had a full service plus new brakes pads sorted, disc something or other and belt thingy bob replaced and a valet, so nice one.

On the way home, I think I have solved my problem of what work I can do when I've recovered from this transplant, as this government will want my benefits stopped and back out in the work place before I've even broken my new set of organs in! I have already been warned that this is what happens by Papworth.
Yay hit you when you are lease able to cope.
Anyway less of the political broadcast and on with my plan.
I was overtaken by a very flash and expensive looking black sports car on the Chelmsford/ Braintree bypass and I apologise now if this is your number plate, but it was V12 SPY.
How cool is that?!
And this car got me thinking, I decided that being a spy would be the perfect job for me.
Why? Let me explain how my weird but brilliant brain works.
1. As I have learnt how to be very patient from endless sitting around in hospitals, clinics etc. I would therefore be absolutely brilliant at stakeouts.
2. Because I'm a woman over 55 years old and all men can't be bothered to give our age group the once over until they have been blown out by the younger ladies. And younger women are so arrogant because of their youth, that they wouldn't even think we were worth a second or even a first look. So I can be invisible as usual.
3. All mad people like to talk a lot and I am a magnet for the outcasts of this world, just ask Julie. They all seem to make a beeline for me and I could get all sorts of crucial information from them as everyone else ignores them and they see all.
4. I am a master of disguise as Julie and Ann reckon I looked like a bag lady in my old winter coat. I'm sure I could resurrect that from the clothes bin and I'll blend in with the people that others wish to ignore.
5. I have my own wheelchair and as we know, Ironside solved all his mysteries with in an hour!
6. It wouldn't matter that I'd have to have masses of time off work to go to Papworth for weekly and monthly tests to see how I'm holding up, as much of the work would be at night and I can't go to sleep until very late anyway.
7. I don't have a flashy sports car with SPY on the number plate, so I won't blow my cover.
8. Ooo and I have a very smart black suit if I have to go to casinos dressed as a man. I do have very short hair too.
9. Ooo and I like olives which all spies have in their dry martinis, although I'd have to swap my martini for a water. A clear head though, so bonus.

Sorted... I am perfect for the job. I wonder if there are a lot of call for spies at the job centre?
I do believe they earn quite a bit of money too, so as I won't be able to live on my work pension without starving, I should be able to earn enough to eat more than a jacket potato and baked beans every other day for the rest of my days.
Call me Bond... Debbie Bond

Lots of love Debbie x

Stand back and watch

I seem to be swamped in paperwork at the moment for my mother and myself and I really can't be arsed to sort any of it out at this present time.
I can't concentrate on anything.
There are parking permits and emergency care plans to sort out for my mother, forms from Papworth to fill in and bills to pay for us both and my head is still in a foggy assessment hangover mode.
Why do you tend to have sort everything out at a time in your life when you really just want to disappear and hide. I will be so upset if the help I'm sorting out for my mother is cancelled, as not only is it a complete and utter waste of my energy and time, but it's to safe guard my mother.
I need to know that while I'm in hospital, that she is alright.

My bed was my safety net this morning and I was very tempted to just stay there reading my book instead of getting up and taking mother to Maldon, but I know she loves going there.
I'm glad I went, as every time you go you see something different and today it was a load of grown men having a mini Cowes style boat race with their remote control boats on the boating lake and quite a crowd was forming to watch it and take part.
They even had a recording of umpire or whatever they have in the boating world, calling all boats to the starting line complete with countdown pips! One of the men even waded out into the lake to move the buoys so the boats could sail round them, now that's dedication.
Men will be boys bless them!
Apart from that, both the people elsewhere and the leaves on the trees had thinned out too. Leaves are really beginning to fall thick and fast now, but I suppose we will be turning our clocks back soon.
The new season is now really kicking into action aswell as a new phase of my life is now beginning for me too.
Being there today makes you realise that life just carries on regardless and that's how I have to look at it too, but I have to admit that I needed to sit in the dark in the cinema tonight and watch an action film, so I could just stop thinking.
I'll be better tomorrow.

Lots of love Debbie x

One very tired and cold bunny

The assessment hangover is still hanging over my head like a huge cloud at the moment, as I feel like someone has removed my batteries and all my energy has fizzled out.
It's lovely having so many people rooting for you, but at the same time it's hard work when you have to pretend to each one that you are all matter of fact and in control of what you have in store, because if you show a flicker of a tear, which is want I have really wanted to do a couple of times since I've been home, you know that the tears will flow from them too and I'd end up comforting them.

Today I was really tired when I woke up and I had a much needed massage booked to get rid of the knots in my back, because there were quite a few to say the least. I could have quite easily fell asleep on her treatment couch, but I had promised the girls that they could push me around Cressing Temple's food show today.
It was a touch and go moment when I could have easily stayed indoors and slept.
I had to be pushed today as a) it was suddenly so cold and b) it was windy and not having much energy, this made matters worse getting around. I had to lean on Julie quite a few times when we couldn't take the wheelchair into the barns and having the oxyge pack on my back, meant that I got pushed and pulled quite a lot.
I was amazed when I went to sit down and catch my breath in one of the barns, that some man said that I couldn't sit there as the seats were taken! Five minutes later four healthy specimens of adults came and sat down next to him. Gits! A very nice gentleman came to my aid and let me sit with him instead on another table.
When I got home, my feet and hands were like ice and I had to turn on my heating for the first time this season which was very scary. People never cease to amaze me I'm afraid.
Strange how already I had forgotten how well I felt last week and how worn out I felt this weekend, but as I said before, this week has been an emotional roller coaster for me.

We had decided to go to the village quiz for tonight's entertainment and it was great fun, but very hard. Julie said that she could hear that I was struggling with my breathing as I was making no sense at times where I was so tired. Still we came 6th out of twelve teams, so we didn't do too bad, goodness knows how though as some of our answers were really rather cheeky. We must have had moments of pure genius at times maybe? Good to know that old grey matter isn't completely dead yet.

Be glad to get to bed tonight and a lie in is in order for tomorrow I believe.
Good night all.

Lots of love Debbie x

Boob job

Every time my mobile rang today, my heart literally stopped, which wouldn't be helpful for the person having mine! I didn't know whether it would be this Friday or next that my name goes on the active list.
But as there were no calls from Papworth, I guess that they haven't rubber stamped the the forms yet. I have this fear that they will ring up and say 'you fraud, no way are you going on the list!' but as I was more surprised than them about my shelf life, I don't think that will happen.

So... the day was spent playing catch up and sorting out my hospital bag. I had my list of things from the coordinator to take in and they were the obvious like a nightie, dressing gown and slippers, but I had to sort out a new bra.
I have to take non wired support bras for after the transplant, as I will have to wear them non stop afterwards to stop my breasts dragging the scar apart if they are hanging free and loose.
Even mine that look like spaniel dogs ears could be a risk for my scar!
Since I have lost weight, I have gone down two cup sizes...bummer.

There are three types of cuts:
1. The way straight down your chest, which will probably be the cut of choice if I have the heart and double lung transplant.
2. The cut under your natural boob line... which could leave me looking like... if I lay on the beach topless... like someone who needs their money back after having a very bad boob job done!
or 3. The surgeon who I met, his new state of the ark cut, where he does two small vertical cuts, one under each breast. He feels that this cut is less intrusive and if I just get lungs then this will be the cut.

The other pieces on my shopping list was a phone holder on a strap for round the neck or wearing it so I could have it attached to my trousers or other garments. I need to be able to get to it easily and more importantly to hear it or feel it buzzing if on silence! I spend ages rumaging around in my handbag when it rings normally.
Also a new tooth brush and toothpaste. And a simple liquid soap which won't bring my under arms up in a rash like the ultra rich face wash that I took with me on Monday. I thought that if I diluted it enough, I could multi task it and use it for under my arms and to wash 'my bits' with it. I now have one very sore armpit and a tender bottom! You live and you learn, in my case the hard way.

Still very tired today. Julie said that it all caught up with her and hit her hard last night and she sat howling her eyes out while watching 'Big Brother' when Mark left the house!
I still feel matter of fact about all the information that I was given, but is this the calm before the storm I wonder?

Lots of love Debbie x

The assessment hangover

I still feel a bit punch drunk today and my head is swimming more than usual.
Luckily I did sleep, but not until late again and I was awake early, which was a bit annoying. Maybe they put sleeping gas in the air con at the hospital, as by 11pm there I had trouble keeping my eyes open and slept through the night with only one visit to the toilet at around 5.45am. Normally I trot back and forth to the bathroom at home, but although in the hospital the rooms were lovely, the toilets were old fashioned and down a long dark corridor.

My pile of paperwork to complete has now increased, as I now have mother's paperwork to fill in for her now. One pile for her emergency care cover via Social Services and her form for reapplying for her blue badge.
I have to get this all sorted as soon as possible, as although my siblings have stepped up, I can't see them coming over on a daily basis, let alone twice a day. If this transplant happens quickly, then I'm going to have to pull my finger out.
I met the lady from the new care agency, who seemed very pleasant and although she asked less questions than the last company, I felt that I could trust her more. Just the way she spoke directly to mother, making it loud and clear, made you feel that she knew what she was doing and I'm usually a pretty good judge of character.
I explained again to mother that she was going to need extra help and she must say what she needs best from these carers. I think at last she realises that I have a big health battle ahead of me. If I go either into hospital or thanks to winter being on it's way, I could get another infection at home and end up wiped out for ages, so I won't be able to help her.
It dawned on Julie that I really needed to come off the respond list for mother's care call and get my brother on. Good thinking Batman.

Greta came round and helped me tidy up around the bungalow, as I have so many dead daddy long legs around the bungalow, the floors look like a battle zone. So she did my hoovering and I cooked her dinner. Less exhausting that way round.
While she was at mine my phone rang at least half a dozen times and I went through the last three days to each caller. Greta couldn't believe that I was actually talking so calmly as I related the procedure and who said what to me, she said it sounded like I was just going to be sterilized rather than have my heart and lungs removed.
I think that if I try and talk rationally about the transplant, then the calmness will rub off on me and the suppressed feelings of terror will stay suppressed. I don't think t will be long before I have a major wobble again somehow.

I have felt quite cold today, maybe a bit of delayed shock or the fact that Autumn has taken a turn, who knows because I don't!

Lots of love Debbie x

I return victorious...I hope

I'm home and I'm absolutely shattered.
But the good news is that everyone at Papworth was agreeable with me going on the list.
I do have to wait though until they get the results back from my reflux examination as there was a hold up in the Papworth getting the results, I do hope I haven't got to go through that again just yet!
And paperwork from my doctor, proof that I have had regular smear tests done recently.
Then hopefully if everything comes back like promised and they receive my forms that I had to take away to read and sign, then it will be next Friday that I go on the active list, as they update it every Friday. The surgeon said it was as good as rubber stamped.

The actual hospital it's self is really lovely. Old fashioned and spread out, but everyone from the surgeon to the porters were really nice and kind to you.
The ward I was on, had single rooms complete with a balcony as it was an old TB hospital the same as Broomfield hospital, where their TB ward had balcony's too.
I learnt a lot about transplants and myself over those three days and was proud of myself for only crying a few tears twice the whole time I was there.
Monday it was full on and I was so glad Oliver was there with me that day and the lovely coordinator who was with us from start to finish and sat with us at every meeting we had with the consultants etc, as we were told of all the negatives aspects regarding transplants in these. These negatives were the facts and figures of what can go wrong even if you survived the actual transplant in the first place.
She did explain that they had to tell you all the bad stuff first and believe me there was a hell of a lot of bad stuff, to see if you had the fight in you and still wanted to go ahead.
Facts such as what the various side effects that the many drugs that stop you rejecting the new organs can do to you, kidney failure, diabetes and skin cancer just to name a few. The various things that can go wrong and what actually happens to you, blow by blow or should I say slice by slice.
Then all about the new lungs themselves failing, which they will and how long that could take to start if you are unlucky.
If you get to five years, then you should have a good chance of going on to a good many years afterwards, but there are a lot that only get five more years.
It's not the length of life that they want to give you, but the quality of life and when you've been told that you have an end stage lung disease and this particular disease at this stage could offer three and a half to five more years of a down hill spiral, well it's a gamble you've got to take and a transplant is your only chance.
At one point I did wonder why they actually did transplants as the news was so depressing.

They are so thorough and explain things so well though, that if they had said that I'd have to wait another three months, I would have taken it from them with no tears or tantrums, as I'd know that they were waiting a bit longer to do it for a good reason.
Today it also looks like it's back on for a heart and double lung transplant now, as it turns out that I have a fairly rare blood group: AB positive.
The surgeon that I met today, his eyebrows went up when he heard that and I instantly thought that he would tell me that it would mean a long wait ahead of me. But thankfully no, as he explained that a) there is a long list of O blood group ladies waiting, so my list is very short and b) if I have the whole caboodle done, then it would be better for me because of where they cut and attach the new organs as less rejection and if I was willing, then someone else could gain and have my heart.
Luckily I had Oliver and Dwight there on the Wednesday takig notes!
When he explained it, then there was no way that I could say no especially not to helping someone else live after I had been given a second chance. Although saying that, if I snuff it and they survive, I'd be a pretty sulky angel as I'm trying on my wings and I could see my harp being thrown at a cloud in a strop!

My new exercise regime has paid off, as my lung function tests preformed on Tuesday were hugely improved. One of the tests that I had the pleasure of, was the exercise where you have to sit in what can only be described as Houdini's famous water chamber only without the water, but just as scary.
You sit with a clip on your nose to stop the air getting in through your nostrils and your mouth clamped round a tube which you breathe in and out through. Not too bad until they drop a flap across the tube so no air goes into your lungs and at that point you think that you are going to suffocate and panic sets in. It was only for a couple of seconds but not nice at all.
The walking test I did really well in even though I was puffing like an old steam train and started feeling really faint. I got through it by pretending I was at Blue Waters walking from shop to shop!
Pathetic I know, but I am an Essex girl!
I must have given a gallon of blood, been x-rayed from every angel and laid on the curled up on my side on a couch panicking where the Echocardigram man was sitting on the couch too, close to my bottom which was pointing in his direction and I could feel wind brewing.
I have a pile of paperwork to read and sign, but I am too tired, but I don't think that I will be able to sleep.
I did go off to sleep at 11pm each night, which amazed me and woke up at 6am and got drugged up and was in the bath by 7.30am, which amazed my friends!

What happens now will happen.

Lots of love Debbie x

Bags packed

Sorry about yesterday's woe is me.
Today I'm nearly back to normal which is bloody amazing considering I couldn't get to sleep until 4.30am with my brain whirring away and I did feel a bit tearful first thing, but a day with my mother in the sunshine and watching the river life at Maldon has done it's magic for me again.
I still feel a bit like a rabbit caught in the head lights, but it's shite or bust now isn't it? I've waited a long while for this assessment and I know where the wobbles came from for me yesterday.
It's because I've felt so well since meeting the Papworth team, that I've forgotten how ill I was earlier this year and that I've got an end stage lung disease which is never going to get better. I've forgotten that one bad infection or even the sort of infection that is mild to most normal people, but totally floors me and I'd be straight back to square one again or maybe worse. Each infection takes it's toll on your body.

So onwards and upwards as they say. Besides if I went into this without a few doubts, then that would worry them into thinking that I wasn't taking it seriously.
So I've had what could be my last glass of Pimms for a very long while and my suitcase is packed apart from the last minute bits i.e toothbrush etc.
So a short and sweet blog page tonight and I'll catch up with you on Wednesday.
I know now what I should wish for and that a new pair of working lungs to make me work normally again.
Simple as.
Wish me luck.

Lots of love Debbie x

Here comes the doubts

For the second time in as many days, I have felt as if my opinion doesn't account for much and I'm hoping that the third time isn't on Monday, Tuesday or Wednesday of next week when I am at Papworth.
I'd hate to go for a hat trick.

I'm very restless today and although I woke up fairly alert, I could have easily just of slept throughout the rest of the day, which is my defence mechanism for dealing with situations that I'm nervous about. I wonder if I had been a spy, would I have lapsed into a coma like nap when they shouted to 'bring on the thumb screws'?
I went off for a swim at lunchtime with Jean to relax myself.
There is something about pushing yourself through the water that totally blocks off any other displeasing thoughts. Whether it's where I am trying not to drown or wishing that the cramp in my toes wouldn't always start when I'm out the shallow end leaving my feet splayed out like a ducks, I'm not sure, but for nearly an hour I can just switch off.

Apart from feeling like someone whose opinion doesn't matter, I also really getting frightened about next week now and if I should be lucky enough to get a transplant.
I know there is a whole list of things that can go wrong as I've been told that things could go horribly wrong with a transplant and half of them I have no idea what they are and don't really want to know.
And for the greater part of this journey, I have successfully managed to shove those thoughts to the darkest part of the back of my mind. But now they are just leaking out and putting self doubt into my already overloaded brain.
There is a fairy ring of mushrooms on the communal grass area outside our bungalows and I have this urge to sit in the middle and make a wish before they get kicked down again by some child with no love of nature.
But what would I wish for?
The saying goes 'be careful of what you wish for' and I think that has shown it's self to be very true. I have been caught out a few times by not thinking wishes through!
I would like to be again how I used to be before this disease appeared, a ball of energy, but that had it's draw backs and the disease was always lurking in the background.
So should I sit outside in the dark in the middle of fairy ring, with my eyes shut and quietly wish for a new set of working lungs? I could as long as I covered all the small print. I'd have to make sure that I said as long as they didn't hurt too much going in and after the operation. And that they will remain healthy and in good working order. That I will survive a lot longer than I would have done without new ones being put in. And of course a lot longer than the NHS statistics say for a transplant, which weren't very inspiring, because I'd hate to go through all of this and only survive another five years. That I won't become one of the 'transplants that have gone wrong' statistics and have to stay in Papworth seriously ill, miles from home, having my poor family and friends travelling up and down the M11 for months on end.
I think I could be sitting in that fairy ring until dawn trying to make sure all eventualities are covered and then I'd forget something which could be a make or break on this wish!

As you can tell, tonight I am having trouble seeing the positives in all of this great scheme of things, which isn't like me. I guess Pollyanna has left the building! Hopefully she'll be back tomorrow.

Lots of love Debbie x