Run Burders Run

What a scorcher today, anyone would think it was the middle of summer in a country that actually has a proper summer, not jolly old Blighty!
What made it hotter for me was that I spent half my day driving from one place to the next and even with air con on it was hot in my car, plus there seemed to be so many cars on the road today and so many traffic jams.

First port of call was to see Barbara and I'm pleased to report that she did look a lot better than her pre heart attack days even though you could see she looked exhausted from the whole experience.
Her colour looked a lot better. It's strange how hind sight is such a wonderful thing, as before she had her heart attack, her skin always looked almost glassy with a redness under her eyes and she looked like she was always running hot. Now she has an even skin tone, even though she said she was still sweating, but this freak hot weather isn't very conducive to anyone who feels ill, especially someone getting over a heart attack.
We didn't stay long as we didn't want to tire her out and also I had too many places to be in and only a short time to do them all.

Next was a dash down the bypass and then across town to pick up my monthly drugs from Broomfield hospital, although it was more of a slow crawl with the heavy traffic on the roads.
Some of the drivers amaze me that they are still alive at the end of their journeys. I'm definitely going to get a bumper sticker made saying, 'I need a donor, I don't want to be the donor!' as I am sick of being cut up by bad drivers and others trying to sit in my boot.
Next from the hospital, a drive to Braintree to pick up my letter for the doctors at Papworth from my dentist to say that my teeth are all present and correct, and all work done that needs doing. And bonus, I didn't have to pay for the letter, that makes a change to get something for free.

Last task of the day before spending some time with my mother and to make sure she had eaten, plus to get her evening meal ready and get then rush home to get an evening meal ready for my friends as well, was to go to rehab.
For some reason I had it in my head that I was just going to drop in and then disappear.
Oh I wish.
Doing exercises on a hot day like this was an absolute killer. I had sweat running down the side of my face and my hair at the end of the session looked shite!
I never used to do this to myself before I was ill, so why am I doing it now I ask?! If they say I'm too fit when I get to Papworth, I will lay down on the floor and cry!

My throat is beginning to feel a bit tender now, which is worrying. I thought that it was still roughed up from last week's grotty test, but now I'm not so sure. So I'm swallowing echinacea and vitamin C like it's going out of fashion.
Please don't let me go down ill before Monday...Pleeeeeeeeeeeeease!

Lots of love Debbie x

Warning.. don't read when you've been drinking

I think I may very well self combust before Monday morning actually gets here, as my head is a regular whirling dervish with all the thoughts and lists flying around inside it.

I opened the email from Papworth late last night and totally misread it. I read it that they weren't going to decide on anything at this assessment and at that point I nearly threw myself and the laptop on the floor in distraught state, wailing like a banshee.
This was probably down to the fact that I had a glass of wine, all be it 'Weight Watchers' wine so not awfully strong, but strong enough when you haven't been drinking wine and I'm a bit of a light weight when it comes to vino, so I was a bit more foggy than usual.
What it actually said was when I read it properly in the morning over a cup of tea... I quote was;
...would not necessarily imply any commitment on your part or ours to proceed to transplantation.
So it was a get out clause for me if I suddenly changed my mind and wanted to leg it out of the hospital and if things aren't totally in my favour now meaning that they can't do my transplant, then it's already letting me down gently so I can't say to them, 'but you led me to believe' etc.
It's as I already knew from being told a million times, that it could all come to nothing until they are sewing the new lungs up inside me and even then things could still go wrong.

Still, the sun is shining and it has been really hot outside today. Sam and I met up for lunch in a rather nice pub garden and we talked non-stop for three hours. The man sitting behind us must have thought 'no wonder she needs oxygen!'
We worked closely together for eleven years and never ran out of things to talk about on a daily basis, so now just think how much we've saved up in between visits!
Our insane chats kept us sane for all those years.
It is suppose to be lovely right through the weekend to next week, but then the news was talking about snow some time in October, now that is insane!

Lots of love Debbie x

Sunny days ahead?

Believe it or not I slept really well last night thanks to my little chat.
I wondered, and not for the first time, whether I should own up about having a guardian angel with whom I have a nightly con flab with or to keep sch um in case the psychiatrist at Papworth stamps my folder with a great big red 'reject' across it!

I know a lot of people think I am loco, but there again there are as equally as many that think it's normal to believe in guardian angels and the results speak for themselves really when I have the various invasive tests done and yet, I'm a calm as a cucumber in the doctors hands.
If it helps, then why knock it, we all have to believe in something?

I actually forgot to set my alarm clock before I fell off to sleep last night and woke up really refreshed for a change just before 8.45am. Maybe I should stop setting my alarm clock an hour earlier than I want to get up, just so I feel like I'm getting a lie in when it goes off?
And still I was at the dentist early for a change.
Happily everything is alright in my mouth and the dentist is happy to write a letter confirming that my gums and teeth are in good shape and there's no treatment out standing, and as there was no mention of a charge for this letter, I'm hoping that she's doing it in goodwill?

Oliver has managed to get the two days off from work, so it's all systems go ready for next week. I phoned the hospital and confirmed it, so I have just got to wait for my email from them with all the instructions.
It will be the first time in years that I have been able to go somewhere and stay over night, without having to take an arctic lorry with all my medical equipment.
Thankfully I don't feel as stressed today, although Reni burst into floods of tears in the car when we were on our way to Tiptree.
She is worried about Oliver worrying about me, but I explained that he wouldn't be on his own and that he'd have Dwight now to share the worry, plus his dad and plus Julie would always be there for him.
Oliver is very much like me, he takes on everything and everyone else's worry on board, flips out every so often and then brushes himself down and gets straight back on the roller coaster for a bit longer.
If I didn't write this on a nightly basis, I would have flipped out ages ago!
My main fear is what she said yesterday and again today, about whether that this is the right time for me. I honestly don't think I could bear it if they postponed again, but if I have to then so be it. i just hope they are used to women swearing like a trooper!

It was lovely and hot outside today, so Reni and I sat sunbathing in the garden after lunch.
Here's hoping that I have a lot of sunny days ahead.

Lots of love Debbie x

Hello...Papworth calling

Well it looks like I'll be packing my bags with my new nightie, matching dressing gown and new slippers care or Ann for a little holiday next week. I hear Cambridge is the place to be at the moment or should I be a little bit more specific and say Papworth is the hot spot.

Yes, I got the call from the transplant coordinator today to go for my three day stay as soon as possible, this coming Monday actually, but I have go within three weeks.
Blimey, there's no hanging around now, but it all depends on if Oliver can get the time off work that quickly. I'll be gutted if he can't.
When she asked me how I felt, I had to be honest and say I was really excited, but I'd probably burst into tears or throw up as soon as I put the phone down! She said that was a normal reaction, so that's cool.
She's asked for the boys to come up for two of the days, Monday and Wednesday if possible, so they can go over everything with the doctors and meet partners or dependants of other transplant patients to find out what it's like from their point of view. I was going to say transplant survivors, but I suppose they have to offer both views don't they?
She said that there would be a day of more tests, but none that are invasive now which I'm glad about. They have to check whether or not that I'm fit enough for this or if I could go a bit longer without the transplant if too fit, which is a bit of a worry as I don't know how I'd feel if they said 'come back next year.'
I reckon I'd probably cry my eyes out non stop until then!
In fact I'm avoiding going to bed at the moment, as I'm pretty sure that the way my mind is jumping about with all my feeling in turmoil, that I'll be laying there wide awake until dawn.
The Pimms has come out, although it was only two caps full in a glass of diet coke and I'm now thinking of all the things that can go wrong again, rather than the things in my favour and I feel annoyed that I've drank that tiny drop of Pimms.
If I think of what can go wrong now and get it over and done with, then anything good that happens has got to be a bonus.
But I have got a major headache now and to top it all I've had my flu jab today, so I'll probably have major reactions to that... Oh woe is me! Bloody hell I'm a whinger!

Lots of love Debbie x

Stand up, sit down

A crap quality of sleep last night. I had what I thought was heartburn again which kept me awake till the early hours of the morning and I think an earwig bit me on my foot.
Can't make this heartburn out, as while they were testing me for it with the bally sensor which was as long as a washing line down my throat, it didn't actually hurt that much apart from the discomfort and that bit still hurts.
Ruth said today if it could be from having the sensor down my throat and that it has roughed my throat up, but it's a wait and see time again.

I could have really done with a swim today, but the opening times at the pool were all wrong for me today, so I did the next best thing which was go for a walk at... hah got you, no not Maldon...but Heybridge Basin this time, which basically is just the other side of the river!
If I had already got my new lungs, I would have sworn that they used to belong to a sailor with this intense need of late to be either in or by the water.
It was lovely down there. I used to go there a lot with my ex husband for walks along the sea wall, but because I feel guilt ridden if I don't take my mother out, I've taken up with Maldon now as you all know all too well. Because it's easier for her to see what's going on from the comfort of the car and it's lovely there too.
I could have just sat there for hours watching the boats sailing past on the sparkly water, but as Ann spent the whole time chasing after Buster, her Staffordshire Terrier who was chasing after other dogs, the whole experience wasn't the one of calm which I was hoping for.
We decided to have lunch on the little quay by the locks and she had just got Buster settled while we were eating our jacket potatoes in the sunshine, when another pair of dog owners just had to come and sit next to us with their dog. Why next to us?
No wonder I've got bloody heartburn again!

I left Ann walking Buster up the towpath to try and tire him out and I went off to rehab to try and wear some of my frazzled nerves off.
We decided last week that I should up my exercise regime from 3mins to 3 1/2mins and then in a couple of weeks to 4mins each one, which means no rest in between each exercise.
I think I'm up to it now.
One of the other rehabers in the class is going to try the same and it was getting a little bit competitive at times today, with neither of us throwing the towel in on any of the exercises, especially the 'Sit to Stand' exercise which is a killer. It's basically exactly what it says, standing up from sitting down and doing that over and over again, say forty times over and over.
If you can, you should cross your arms across your chest so you're not pushing yourself up from the chair, but this one hurts your knees as well as draining out every bit of oxygen from you.
As we were sitting next to each other, it was a case of grind your teeth, dig in and get on with it, so you could match each other if not better each other. How sad am I!?
I have a feeling that I am going to hurt tomorrow and that is from only an extra 30seconds for each exercise.

Still this extra push of exercise is helping my diet as I've lost another 1.5lbs, making a total of 11lb off now.
It's a tremendous buzz each time they say how much you've lost each week. Two more weeks maybe and I could have lost a whole stone. I didn't think I could ever do that again unless it was through having pneumonia again!
Mother and I have our flu jab tomorrow... great I can't wait.

Lots of love Debbie x

eBay your sins!

It was the Harvest festival service tonight which was quite a fitting end for such a lovely day.

The breeze today was surprisingly warm and no coats were needed at all at Maldon this weekend.
Although everywhere you looked, the leaves are beginning to turn gold now and there was a sense of gathering from everybody today out in the park.
I know that sounds kind of weird, but I am weird, but what I meant was, that people were gathering in the last chances to go crabbing with the children or for walk along the prom and to feel the sun on their bare arms or to sail their mini versions of the boats that they'd really love on the boating lake. A kind of storing up happy memories to get them through the darker months to come.
Skies are always bluer in late September and October, so the tinges of golds and reds on the trees make a striking picture against them, just makes you want to go out and enjoy the day.

I didn't start off in any hurry to get there and be at one with nature though, as I had a very steady morning laying in my bed making phones calls, eating my breakfast and reading magazines till quite late.
The good thing about being retired is that I have all the time in the world to do various tasks, so if I want to lay in my bed like the cat whose got the cream with the sun streaming through the window, I will.
This week has been a heavy sort of a week anyway with worrying and soul searching, so I think I deserve to chill out a bit.

The Harvest Festival service was really nice, although the visiting minister was a bit fire and brimstone and had a lot of hand waving going on and the topic of the service was Noah's Ark.
It's a lovely story and one that sticks in my head from childhood. I love the ending about the rainbow being a promise to mankind, but there is no way that the animals still came out two by two after being stuck on that ark for a year, certainly not if there was rabbits on board!
The choir sang two beautiful hymns for us, but the first one had a line in it which I know I misheard, but it did get me wondering about things especially when the minister got a bit boring.
I know I heard it wrong, but I thought they sang 'sell my sins on eBay'.
Got me wondering about eBaying my sins or definitely my faults.
Fault 1: Having an opinion about everything and anything.
Fault 2: Thinking my opinion is right.
Fault 3: Being a bit of a bitch at times. I have a razor sharp tongue and a dry sense of humour that is a bit below the belt at times.
Fault 4: Being impatient at times, especially when people can't gasp fault 1 and 2 quickly enough!
I could go on, but I'm depressing myself now.

It was nice though sharing the harvest loaf with the rest of the congregation.
I know I have a weigh in tomorrow at tubby club, but it would have been rude to turn it down and just have coffee. So I had a small square of bread, a tiny piece of cheese off of Reni's plate and quite a few pickled onions that had a real strong kick to them. They made Reni's face look like Popeye's for a while!
We then went off to have our meal that Oliver was preparing for us while we were at church and it was delicious, especially as it had been cooked for you and all we had to do was sit down at the table... bliss.
I'm sure that I hadn't really eaten too much of anything that I shouldn't have, but it was a special occasion and I have been very good all week. Plus I had got Oliver to do me some mashed potatoes instead of me eating his absolutely scrummy roast potatoes that he cooks so well... hell not having them was a real sacrifice!

Lets hope that the next harvest that I'll be taking part in, will be the harvesting of my new lungs, but I do find it extremely hard to even think about how I will come by them. That will be a bitter sweet harvest I think.
Probably best not to dwell on that now and just enjoy the Autumn.

Lots of love Debbie x

David Essex is my saviour

Hoorah for David Essex! He is my saviour today.
I woke up feeling a bit rough after last night's very unsettled sleep thanks to a case of really bad heartburn and really bad bottom burps.
And of course non-stop worrying about Barbara being up in BasVegas hospital on her own.
Being in Broomfield didn't seem so bad, but she seems so far away in Basildon.
I have been dropping off to sleep really easily just lately where I am actually physically tired now, but last night I saw every hour half in till about 3.30am and I wanted to be up and dressed and semi human when Derek came to fix my 'go faster' trolley at 9.30am.
Unfortunately, I lost a nut out of one of the handles up at Broomfield Hospital and bless him, he has come to my rescue again.

I started off not too badly. Derek fixed my 'go faster' and my curtain rail too, which had decided to part company from the bedroom wall, so two main jobs done. And I got my first lot of washing out on line when he got here and managed to strip and change my sheets on my own too.
So I was doing ok.
Then I made the mistake of calling my mother to remind her about her manicure appointment. She was looking forward to having it done last night and today she didn't want it done at all, no way!
With the after effects of the 24 hour ph pull through examination kicking in, in the form of a roughed up throat and sore skin from the very sticker plaster or was it gaffer tape! Plus the worrying of Barbara, the kindest thing for me to do, was just to tell mother to sort it out herself and put the phone down.
she know has beautifully manicured nails.

By the time Reni came round to see me, I was like a tightly wound spring and ready to either burst into tears or yell my head off in the garden to vent off steam.
Barbara is fine as I had texts from her daughter and the Barbara herself. She has had the stents put in and can go home tomorrow, but her texts about leaving her lungs to me worried and unsettled me a lot, and set me off worrying even more about her and all my friends and then even my own mortality, which I thought that I had got a handle on.

Luckily, we couldn't park anywhere near the theatre at Southend where we were going to watch David Essex in his play 'All the fun of the fair.' So we had to walk a good 15mins either way and it was quite uplifting marching out my stresses with all the seaside twinkly lights to guide me and I could do it!
Thanks to the weight lose, the swimming and the weigh lifting at rehab, I could walk with my oxygen on while holding on to Ann and at quite a steady pace.
Ok Mr Essex could have probably heard me and my heavy breathing coming from the comfort of his dressing room. I hope he appreciated my sterling efforts to get to see him, but my mood has now lifted again and I feel I'm back in the race.
Oh and the play was good too by the way!

Lots of love Debbie x

Meet Ms Bossy

I needed to swim today. Strange how something that I started only three weeks ago has had such a big impression on me.
I pushed myself even harder today and managed 14 lengths. Weirdly enough, I couldn't do that many when I was fit!
I have always loved the water. Be it rough on a stormy day at Walton on the Naze or all sparkly in the sunshine as in the sea at Oludeniz.
Maybe a silent and majestic loch in Scotland or a little ice cold fast running river in a field to dabble your feet in. I have never been a great swimmer, but water has a real hold for me. Probably why I love my picnics at Maldon so much.
Even when they sprinkled my father's ashes at sea as we watched from the quay at Hastings, it felt right and proper, not sad as he was going home.
I've always used it as my passage to calmness, using it to be able to zone out of scary places or situations and it works a charm.
Today though, I really needed to relax and clear my buzzing head.

Yesterday, my impression of an old fashioned magician pulling a string of coloured flags out of my throat rather than a top hat in the disabled toilet at Broomfield hospital, was a huge surreal moment!
Strangely enough, my heartburn has come back with a vengance tonight, so I wonder if I had it when I had the sensor down my throat, but it was masked by the discomfort?
And then finding out that I could have lost a best friend through a heart attack, really hit home first thing this morning.
I am used to my disease that has crept up on me and stole parts of me over the years, but my hustling bustling friend could have been... poof gone, just like that, all because she didn't want to make a fuss.
I have realised that perhaps my friends don't take as much care of themselves as they should do and that they think that I am a nag.
Some smoke and some ignore the warning signs such as high blood pressure, or pushing themselves to hard, or forgetting to exercise or to eat properly. Perhaps everyone needs a little scare to make them realise just how fragile life really is, but not like ending up in hospital, maybe just a bolt of lightening with a big wagging finger at them?
I realised yesterday that I could lose a friend so suddenly as we are all coming to that dodgy age! And I don't want to lose any of my friends from heart attacks or strokes, so from now on they will be nagged within an inch of their lives.
Why? Because I love them and they make my life on earth so much better.

Lots of love Debbie x

Get well soon Barbara

What goes up must come down as they say, but in my case it's what goes down must come up and up and up!
After the 24 hours were up, I stood in the disabled toilet at Broomfield hospital and pulled the sensor out from my gullet as instructed, although they did miss out 'the ladies toilets' part from what I remember, and I could not believe how long the damn thing was. It had to be at least 18" long I kid you not and the tape that it had been stuck on my face and neck with, really made my eyes water when I took it off...Ouch.
It made Reni and Ann green too when I showed them. Shame I forgot to wipe the bogie's off before showing them!

I actually did ok last night and even though I thought I would probably strangle myself in my sleep with my oxygen tubing and now with the sensor wires tangling up together, but I think remained in the same position until I woke up this morning... Result.
This scary part is that I am now hoping that the results from the NHS walkman will go straight to the Consultant GI physiologist who performed my procedure and not get mislaid on route.
Then straight on to my specialist and then off to specialists at Papworth, where they will say 'lovely, everything is straight forward, we'll forget about the wait, here's your new lungs!'... I wish.
It's 12.35am, I have just rang my specialist's office and left a message telling them I've handed it in at Out Patients as instructed... just in case. Because there's no way I want to go through that again, not for all the green tea in China. Not on your Nelly. Been there, done it and got the snot on my t-shirt!

My lovely friend Barbara is in Broomfield hospital now as we speak, as she had a heart attack last Wednesday at home and has only just managed to get in to see her doctor at her surgery as she didn't want to make a fuss.
I hope with all my heart that she gets well soon, but it sounds like she might be in for quite a while, as they are talking about putting stents in her heart.
Please, everyone that reads this, please send her good positive thoughts and wish her well soon.

Lots of love Debbie x

My poor nose and throat

Well that's an experience I'd rather not have to endure again in a hurry. My 24 pH pull through examination is in my gullet and the readings are under way.
I was a true Essex girl and thankfully the days of my colourful sex life had stood me in good course for swallowing the tubes!
Why they have to go in via my nostril is beyond me? Yet another form of torture under the banner of the NHS I guess, but I performed like a trooper and when they said swallow, I did.
In fact the nurse said that I was the quickest examination that they had ever done. I was just very glad that I remembered to take my mascara off before going into the ward.
I asked the specialist if his pet hamster used to hide from him when he was a child, as at what point do you think, 'I know, when I grow up I'm going to stick tubes up peoples noses and down their throats!'
Did his pets walk round with stunned expressions and straws stuck up their nostrils?
See I just knew wanting to be a ballerina was boring!
They reckon that the examination should take up to an hour getting the two tubes in and one set of readings done, but I was done well under 30mins and on my way to find Julie and Reni who we had sent off to get a cuppa on the ground floor of the hospital.
In fact I think the girls thought I had legged it when I stood in front of them asking for a cuppa!

Now however, I'm not feeling quite as chirpy. It feels really gritty, as if I have something stuck in my throat which of course I have, another wire kitted out with a sensor that sends messages to the recorder that I'm wearing around my waist like a bumbag.
Every time I eat something, it must be sending messages to the recorder that I'm wearing, as I get like can only be described as an electric shock sensation in my nose.
To eat I have to cover the nostril with the tube in it with my finger and press down on the nostril just to stop the shocks.
Not liking this bit one iota and I've still got to sleep with the damn thing in and joy of joys, I then have to remove it myself at 2.30pm tomorrow. Yuk.

I wasn't in the greatest mood with my mother either tonight I'm ashamed to say. I had gone round as soon as I got home to see her. She had my sister round in the morning changing the curtains and my brother and sister-in-law were there visiting when I went round. So she had seen plenty of people.
While I was there, I told her that I might not feel up to cooking for her at night and when I rang to confirm my suspicions, she starting moaning that her TV had gone funny yet again.
To say I really didn't feel up to it, was an understatement and when I got there and it was working perfectly, I could have throttled her. It was only the fact that sudden movements with this blasted thing in me sent electric shocks up my nose that stopped me shouting at her!
I know she is 93, but I do wish she would try harder at times and stop expecting me to do everything all the time.
I'm off to bed to sulk soon.

Lots of love Debbie x

It's a take over bid!

I think my body is staging a coup today, the nose and the bowels in a pincher movement as they are behaving totally unreasonably!
My nose has decided to try the ruse that if it keeps running non stop, that the nasty man or woman will go 'Err yuk' and won't try and stick a tube up it! Somehow I don't think that ploy is going to work and I can see me with a tube up my nostril and watery snot running down...and all over my top lip.
Oh sweet, how I love my life!
My bowels after eating a healthy lunch of roasted vegetables and salad, could not stop passing wind when I was having my physio this afternoon. Where I was trying my best to keep it in, the wind was coming out in little pops in tune with the rhythmical beating of Hannah's pummeling on my back. At one point I was concentrating more on keeping my bottom cheeks together than I was on bringing up the contents of my lungs and so I desperately wanted them empty for this examination tomorrow so I don't chunder all over the nurse.
So I had to bite the bullet and tell Hannah to hold on to the sides of the hospital bed and let it all go in one... and oh boy it didn't disappoint.
As I said...how I love my life!
I am so glad that I don't get embarrassed easily, but I did feel a tiny bit mortified this time.

The rest of the day was brilliant, as I had my old friends drive down from London to see me for lunch, hence the healthy roasted vegetables.
It's always good to see friends especially ones that had found you again after twenty odd years. Janet tracked me down at the end of last year after she picked up a paper with me on the front cover... no I hadn't committed a crime! And we finally met up again in July this year after lots of emailing each other. It was lovely because there were no pregnant silences of what do we talk about now, but we just chatted and laughed non stop. So we promised each other to meet up every other month at least and today was visit number two and once again it was a success.
But I do hope that they weren't farting all the way back to Enfield too, otherwise it will be another twenty odd years till I see them again.

I am going to chance providence and eat the left over vegetables for my evening meal now and have a glass of wine to try and relax me ready for tomorrow.
Still if he does hurt me, I'll just point the bottom cheeks in his direction as those babies will be loaded ready for action come tomorrow.
Please everyone who reads this, cross your fingers for me so I don't cry like a big baby!

Lots of love Debbie x

A little bit of this and a little bit of that

Yay... I have been awarded two shiny stickers tonight both for all my extra exercise... a bronze and a silver sticker!
How about that then, me a raspberry ripple getting shiny stickers for exercise.
I am so proud of myself.
Ooo and I lost another lb. I had hoped for a little bit more, but at least I'm going in the right direction and they do say, that it stays off longer if it comes off in little bits and I've not put any on as yet.
I am so taking my slimming book complete with stickers to show the specialist at Papworth when I go back for my three day stay, who knows he might even give me a shiny lung shape sticker!

Not a bad day actually today. I was really tired all day which is always a bit worrying, but as I have upped my game somewhat just lately and I do have a stupid habit of over doing things, I'm not surprised that I'm tired.
But today was all about little bits. A little bit of washing, a little bit of ironing, more than a little bit of food shopping alas... and food has gone up more than a little bit too! A little bit of spoiling myself with a weight watchers biscuit when visiting Julie this afternoon. Gosh having something crunchy in your mouth is so damn good!
And lastly, a little bit of pushing myself a little bit more at rehab.
It should have been my last session at rehab today, but as Hannah says it's only a small group at the moment, she reckons I can stay on especially as I'm so close at getting these new lungs now and we don't want me to stop the momentum of me doing so well keeping fit. But we decided after a chat, that I can try and go for the four minutes for each exercise from now on.

Well I am really tired now and can't stop yawning, so off to bed now.

Lots of love Debbie x

Last few days of summer 2011

Today I made some apple and blackberry pies for my freezer and some elderflower wine ready for Christmas.
Did I really? Did I heck, it was back to Maldon for me to lap up the late sunshine as this coming Friday is officially the first day of autumn.
I'm sure that when mother and me both snuff it that we'll have a brass plaque fixed to the wooden fence, with 'Dot and Deb's spot' engraved onto it!

It was glorious today down there and the river was really busy with lots of boats and barges of every size motoring and sailing up and down on it. I'm pleased to see that the passenger cruiser was still running, so we might actually get to go on it before the year is out.
The boating lake that we sit opposite was really busy too with families crabbing and the normal Sunday group of men who were sailing their mini yachts. I wonder if in theirs heads they are captains of gin palaces off to foreign shores.
It's quite funny that if we come here in the middle of the week, you get men of my mother's age sailing their wonderfully grand homemade boats and on the weekend, it's men of my age...bonus!
Boat sailing must be the new golf.
I wonder if I could get one of my own to sail and meet some of these chappies? Coo shiver me timbers!
But I did meet sailing his non motored yacht, was my old friend Ivor who used to be our chaplain at the university. Ruth, who was the campus nurse, was sitting on a bench with her head in her kindle catching up with the latest best seller while Ivor was sailing his leaving present from Mission Croatia.
For those who are in the dark, Mission Croatia was Ivor's dream come reality, where he would take a couple of mini buses full of students and willing staff, plus stuffed full of supplies over to a crumbling children's hospital in Croatia and basically spend two weeks every year helping to put it right.
It was lovely to catch up with them as it's not that long ago that I replied to her email with promises to meet up soon for a coffee and here we unexpectedly are! And it soon became evident that we had loads to catch up on with all the gossip from our old office.

I had a quiet night in front of the TV tonight, which I was going to spend ironing, but that can wait till tomorrow morning. I've got so focused on trying to lose weight or doing exercise, that I've forgotten how nice it is just to stay still. Plus I've forgotten how tired I get as well.
But all in all, a lovely day.

Lots of love Debbie x

One year on

I had a message on my face book page last night, showing me what I had put on my status around this time last year and it just goes to show that you can get used to just about anything in life and how things become the norm.
Surprisingly it is now been a year since I have been on full time oxygen, which basically means 16+ hours a day of oxygen. Sometimes it feels a lot longer.
I'm still annoyed most of the time that I have to keep retracing my steps because of the damn tubing getting caught on or under things and I still hate the way that I can't just dash out the bungalow if I am late for something, because I have to fill up my portable before I can go anywhere.
But however ill or hard done by that you feel, you get used to it as it becomes the norm and it's business as normal.
I can't actually begin to comprehend how I will feel when I do or if I do get this transplant? What will it feel like to feel normal?

My ex came round to cut my lawn this morning and tidy up the garden for me and I decided to cut the hedge.
A year ago there is no way that I would have been able to do that, actually even a month ago I wouldn't have been able to. I would have been clinging on to the hedge for grim death barely able to breathe, but somehow even though my health has deteriorated, there I was tidying up the hedges. Ok my breathing was terribly laboured and there was that light bulb moment, when you realise that was a really stupid thing to attempt to do, but I did it.
How?
Not working full time anymore has helped me beyond anything that I could have imagined. When I was still at work, I thought that retiring would be the end of me, that I would have nothing to strive for and go into a decline. How wrong was I.
So what has changed? I guess going to rehab and actually listening to what the physios are telling you to do and actually doing it has paid off as I am stronger and managing my energy levels in a more productive way.
Yes I still use my wheelchair when I am very tired and I still drag odd shoes, tissue boxes, books etc around behind me caught up in my oxygen tubing. My stats are still unpredictable and scarily low at times and I still can't relax in a bath properly without bringing up the contents of my lungs every time I try and lay down in the water.
And I still swear and stomp about at the injustice of it all... but shite happens, deal with it.

So tonight I had a lovely meal out with friends and I looked like everyone else around the table, eating, drinking and discussing the whys and wants of the world around us until it was 9pm, and then like Cinderella I turned back into the other me, the me that needs oxygen therapy to survive. But it wasn't as awful as it was a year ago, as like I said, it's amazing what you get used to. Though having the hope of a second chance from Papworth has helped big time.

Lots of love Debbie x

I am a worry wart

A bit of a downhill spiral last night before bedtime where I felt really sorry for myself.
By now, I have got to realise that this feeling of doom and gloom happens every time I have yet another test and I have a pretty disgusting one looming up on the horizon for this Wednesday coming.
It's the day of my 24 hr pH pull-through examination or otherwise known as an Acid reflux test. Basically it's where they stick a tube up your nostril, down the back of your throat and position a sensor in your gullet to record everything that goes on down there for the next 24hrs.
And then joy of joys, they go back in the next day to remove it. Mm hmm I can't wait for that jolly little outing!
I had to stop taking my Omeprazole tablets yesterday to get ready for it and didn't think that I would notice that much difference that quickly, but I have and that scares me about what it means re the transplant. They said that it wouldn't stop me having it done, but it would affect how they would treat me afterwards, but what happens if it turns out to be something different to what they were looking for in the first place?
I was told that I would have to overcome hurdle after hurdle for this transplant, but I am getting so weary of trying to look on the bright side all the time.
I've taken to drinking coca cola, diet of course as I'm doing hurdles trying to lose weight too remember! But I'm drinking cola as I remember when I was pregnant with the boys, that it was the only thing that helped my heartburn then and when carrying Dwight, I had it really bad. Weirdly enough, I was told that bad heart burn is a sign that the baby will be born with loads of hair. Dwight was a bald as a badger, it was it Oliver that had a full mop of red hair.
Maybe I'm just pregnant now with a hair ball after all?!
Still this morning was another day and everything feels worse in the night doesn't it?

Mother actually got her garden rail put in so she can go out into the garden safely now and I managed to order her a new large button remote for her TV, as she keeps catching the button that switches it back to the analogue channel.
So she's now a happy bunny that things are sorting themselves out at last.
Jean and I went off swimming again lunchtime and it wasn't as busy this time which was easier for us for going slowly up and down the pool.
I managed to do 12 lengths this time, which is two up on last Friday and I managed to position my foam woggle float better under my body, so I could use my arms more and I wouldn't bruise as much.
Though the tops of my arms are now hurting like hell, as from swimming I went on to rehab and I swear I'm going to end up like Arnie Schwarzenegger with all this weight lifting!
Ok the little bulges on my upper arms are about a million times smaller than his, but I do feel so much better from all this exercise... so much better in fact, that I fell into a deep sleep on my sofa as soon as I got back from rehab!

Night night!

Lots of love Debbie x

Bad smells equals bad moods

A bit of a strange one today.
Started off really well as I had lunch round my friend's house, so I got myself dressed up and even wore a dress for a change. And I got to see her little grand daughter again, who has grown so much already and is a real cutie.
She's a really good friend, who I love seeing and I had a lovely time there with a lovely lunch, but driving home the day started to go off. By this I mean a ruddy awful 'something gone off' smell.
I come home down the A12 as normal to turn off at the Springfield junction and that is when the smell started.
I thought at first that I was just up wind from a pig farm or sewer works and it would pass as soon as I passed, but I was unfortunate as I then got stuck there in traffic on the A12. But the longer I sat there, the more nauseous I felt, as it stank really awful.
I have a feeling that I was following a trail of spilt sewerage or something equally smelly, as the road ahead of me had this very long trail of freshly wet stuff, which just happened to be going the same way as me.
Unfortunately there was a traffic accident ahead, hence the hold up.
I could still smell the stench the whole journey home even when the trail had disappeared. I'm not sure if it had got into my air conditioning or what, but I felt head achy and very green by the time I got home.

I went to make sure my mother was ok and fix her evening meal.
Unfortunately I was met with the normal moans that no one had been to see her or phoned.
And gawd only knows what she does with her TV remote control, but it was on the analogue channel again and I had already fixed it before I went off to my friend's for lunch. I am not a TV repair person and I am getting fed up of getting nowhere with the digitial switch over help line.
I can see why the old school rock stars used to chuck the TVs out the hotel windows, as I am so close to following their example or chucking myself out instead!
If I could only run up the garden path screaming in the sunset, but although I can do a quick burst I soon slow down and a slow walk is hardly rock n roll is it!
I sometimes feel as if I'm the mother and she's the naughty child and her moans were because I had been out for the day. Unfortunately I really wasn't in patient mood.
I just want my old mother back.
So now I feel a real grumpy old woman, just like my sign... thanks to Julie... says on my front door.
So I'm shutting up shop early today and hopefully this nausea and headache will pass soon.

Lots of love Debbie x

Itchy feet means what?

Does anyone know if it is possible to have chilblains in summer? I know that for nearly all of the latter part of August and the beginning of September, that my feet were rapidly turning into webbed toes and in the end I chucked away my little purple pumps.
I loved those shoes, but I think that they had got so wet so many times, that my feet were never warm in them.
I now have a red patch on my left foot just above the little toe, that when it gets warm, it itches like hell.
So once again I ask: is it possible to have bally chilblains in summer or am I just allergic to my slippers?

Me and my itchy foot had a lazy day today, as I had to wait in for a builder to look at my bedroom window frame, which is rapidly falling apart even though I had new windows in January 2010.
By the time he came, I had re-potted all my hanging baskets out the back of my bungalow... and yes I am smug, but they are going to look really good this autumn...and four of my planters have also been planted up again.
Then I wrote out eighteen postcards for various competitions and finished off another four prize puzzles before cooking up a bolognese for lunch and eating it.
The builder came eventually, moaned a lot, took some photos and then left after a whole ten minutes. His verdict was that, yes the windows have to come out and a new frame put in and I should chase them up if they don't contact me within three weeks...bye.
Didn't I tell them all that on the phone about three weeks ago?!

Hannah came round just after he left to give me my physio at mine, which always more relaxing and not so hot as having it done at either St Mike's or St Pete's.
I'm not sure why hospitals have to be so hot. But believe me when you are balancing on a treatment bed with your hips resting on two air filled pillows and the treatment bed's head tilted down so you are hanging on to the bed for grim death, while literally having the crap pummeled out of you, it's not a smidgen relaxing and very hot.
At home, you lay on your bed still with pillows under your hips to aid the postural drainage and you still get the crap beaten out of you, but it's a far better experience.
Hannah did comment on the fact that she could feel my rib cage more when pummelling my lung area on my sides and I have noticed that since I've lost weight, it does get a little bit tender afterwards and I've still got a stone to lose yet. She reckons it will be like playing a xylophone then!
Though, whether I'm slimmer or a chubby, I still get a stonking headache afterwards.

Went to see the latest film version of Jane Eyre at the cinema tonight with Ann.
I do wish that people didn't buy huge bags of popcorn, as in an atmospheric film such as this one, the rustling of hands in the popcorn bag and god forbid the loud munching, all rather kills the mood of an anguished love story!
As it ended she was still eating the damn stuff. I hope it makes her constipated!

Lots of love Debbie x

This green and very pleasant land

Aye aye it certainly was a full moon last night, as today I've turned into an emotional wreck!

Julie came round looking gorgeous, she was lovely and brown and she looked totally relaxed for a change. She told me all the news from our friends and made me laugh with tales of her familes mad holiday adventures.
She brought me two stunning whiskey glasses decorated in a traditional pattern for my belated birthday present from one of our favourite shops, also I got an unexpected present from the owner of that actual shop, who remembered me and a letter from my old best friend Kerem.
I did have moist eyes when I read Kerem's letter to me, but I kept it under control. I met Kerem the very first time Julie and I went out to Turkey on holiday and he has been a really good friend to us over the years, always looking after us and getting us out of trouble whenever we needed help, so that was a lot of work for him!
I'll never forget when I got rushed into hospital the very first time with this damn disease and he rang me from Turkey to the hospital ward here.
Bless him, he's this huge rock of a man who is quite scary to meet at first, but a big softy underneath. But even though his English is brilliant, he was finding it a bit hard trying to pick the right words and not to worry me when he was worried himself.
So in the end he told me not to die, as he had just brought a large glitter ball for his bar and I had to see it!
Given a reason like that to live, it would have been churlish to die!

I met my mother's social worker today and he seemed a very kind and competent man. He wants mother to try a daycare centre once a week so she can meet other people of her own age, which I could tell she wasn't over impressed at the idea. But she agreed to it anyway, once I impressed on her that it was daycare and she could come home at the end of each day, plus it was only once a week.
I think it would be a great idea if we can actually get here there, as she does totally rely on me for her social life. I think perhaps I mother her too much?
I suppose she thought if she agreed, she had at least another three weeks before he could sort it out and by then she could come up with enough reasons that convince me not to make her go.
Also they are sending out a assessing carer, if that's the right term, who will watch her and then feed back how well she is doing, to determine what amount of care she'll get in the long run and hopefully get her confidence up again.

So, so far, no real tears, so why the emotional day? I was pleased to see Julie, and pleased that my friends hadn't forgotten me over there. A bit worn out yes from all this trying to sort mother's needs out I admit, but not tearful.
So why?
Because I had recorded 'Last night of the Proms' and watched it late this afternoon while getting my dinner sorted. Why does 'Land of Hope and Glory' reduce me to tears more than 'Rule Britannia' and if the first one didn't make me cry enough, then 'Jerusalem' has me weeping like baby. And 'God save the Quee' sends shivers up my spine.
I sat there in front of my TV crying into my 'Slimming world' bolognese while saying how much I love it... the music not the bolognese, although that was very yummy too.
I so love the 'Last night at the Proms' and everything it stands for, the pomp and regalia, that it has people dressing up in their own or hired bow ties and tuxedos, tiaras and ballgowns, or people dressing up as Dr Livingstone and The Beatles.
Singing to Jerusalem is so apt at this time of year with the fields freshly ploughed, recently cut hedges, but still lots of green about and clear blue skies .
It just looks hopeful out there, like a newly spruced up boy starting a new term at school. It really is a green and pleasant land that we live in. I really hope that all the younger generation that were singing this at the top of their voices in the audience, stop and listen to the words too and say 'yeah actually Britain is pretty great!'

Ok I am officially pretty damn weird!

Lots of love Debbie x

Flapping duvets...

Bit of an unsettled night again last night, as my stomach was not a happy bunny, as the lethergic, bloated feeling that I was experiencing on Saturday, came back with vengance in the middle of the night.
Once my stomach stopped hurting thanks to the slow release of trapped wind...under my duvet was not the best place to be, believe you me!... my legs then took over and decided to twitch the wee hours away. Gawd how I hate restless legs syndrome.
I woke up this morning feeling absolutely drained.

Under my duvet wasn't the only windy place, as outside I think the highly fore casted tail end of Hurricane Irene had arrived, though thankfully not anywhere near as bad, but according to the news on the TV, it was bad enough to blow down brick walls etc.
Driving the car was quite scary at times, especially when you were driving past open fields and there was a lot of debris in the road in places.
I had washed my mother's dressing gown and that had dried within 30mins in my back garden, but it had to be attached to the washing line with an army of pegs to keep it there.
I also had to try and prop her garden fence back up, which had been had a causality of this wind, that is until Derek, my hero, returns from his holiday and can fix something up for her that doesn't include a broom which has been wedged between garden flower beds and fence as support.
I have never professed to be an expert at DIY, but I had to try and do something as the rest of my siblings had seemed to have disappeared!
All this after a heavy session at rehab.

I only have two more sessions at rehab until this course finishes and then I will have to wait and see if they have more spaces available for me to go again.
There were more new faces again this week, but still all men and mostly the normal COPDs suffers. There is only one other lady that comes on a Monday and two more on a Friday. The rest are all men. I am the youngest by about 7 years, as the age ranges with the others from between 62 to 80+
They say women are noisy, but they have clearly never been in our rehab class, as it is the men that giggle the whole way though the class, in between teasing Hannah unmercifully that is!
I still get teased for being the class swot, as I take my exercises really seriously now and like to better my total each time. So I only join in the playful banter in between exercises, as I am counting for the rest of the time, but believe me, I give as good as I get.
This course and the incentive from Papworth, has really helped me this time, as I no longer struggle like I used to and I do believe that I am starting to get a definite firm muscle in my upper arms! Mind you I ache like hell now.
We had an opportunity to have a prescription written out today for an emergency back up kit.
Antibiotics, steroids and for me, extra strong phlegm clearing medication.
This is the first time that I have had a back up supply and it gives you a nice safe feeling. If you are going to e ill, you can guarantee it will be at the weekend or a Bank holiday weekend!
Obviously if I think I have an infection, I'll wait a day and see what happens and send a sample first before taking any more drugs.
Last week we thought that I had one brewing, but it was just over tiredness from all this extra exercise and dieting, which is what I suspected.

Alas, I only lost half a lb today, but I did win a melon in the 'Superfood Bingo' and a punnet of peaches as a raffle prize, so not all was lost, that should cut down my fruit bill.
I also brought their Christmas recipe book, which is a bit scary especially when someone said it was only about 14 weeks to Christmas! You always get some bright spark in every group don't you.
Our consultant advised us to eat more 'Super foods' this week to speed up the weight loss. I already consume so many punnets of fruit a week as it is, which is why I am always going to spend a penny and it also costs me a small fortune. I should really go out and pick the blackberries from the fields and road sides, which would save me a fair bit.
But I have to be honest, I haven't eaten as much fruit and veg as normal this week, as I've done lots of pasta and jacket potatoes instead, so I must remember to always include a salad or I will never get my gold star from Papworth!

Lots of love Debbie x

Days like this, make you glad to be alive

That horrible sluggish feeling that I had all day yesterday, has passed thankfully and left me feeling more like the day today: brighter.
Decided to try and make the most out of the weather and me being more energetic today, so as normal; it's Maldon time.
I know I am turning into a creature of habit, but my mother really enjoys going there and watching the world go by from the comfort of my car, as we can park close to the boating lake which overlooks the river so she can see all what goes on without me hauling her in and out the car too many times.
And I get to go for a walk on my own now I'm not scared of keeling over and get to soak up the sunshine, as well as feel part of the human race again.
My 'go faster' trolley, was a really good buy...thank you sons...as it certainly gives me confidence to go a little bit further each time.
It was so nice walking down the prom today with the sun on my skin and the breeze coming off the river onto your face. Listening to the gulls screeching at each other as they waddle across the mud flats and watching the river life go by in the shape of little dingies to large Maldon barges with their characteristic maroon coloured sails.
I will never take anything for granted ever again.

I also did some gardening in the morning, well my ex husband did the gardening and I just did the pointing. I used the excuse that my oxygen lead from my concentrator wouldn't stretch that far! But we both agreed though, that this was the first year that I've even thought about re potting my garden planters this early ready for my autumn/winter show.
I enjoy sitting out in my back garden talking to my ex over a morning cuppa. We talk about our boys... well they are men now, sorry chaps... and what they are getting up to and discussing people that we both know and what they are up to too. A right pair of gossips!
We were married for 29 years, so I guess we will still have a lot in common. Just a shame we couldn't live together in the end, but we are best friends, so that's good. Funny though, as our relationship confuses the hell out of most people!

I went to the cinema tonight with Ann and had to spend a penny three times! All this healthy fruit and veg for my diet is certainly having an effect on my bladder and even though it was an action packed film, all I kept thinking about was, should I eat my Hi-bar now!
I get weighed tomorrow and I have no idea what the outcome will be when I get weighed in. I sometimes think that Papworth have set me an impossible task to lose this 1st 11lb.
I am pleased in one respect that I'm not going for my three day stay until October now, as it will give me a bit more time to lose the next stone and 1lb, which I think is going to be the hardest to shift. I do honestly believe nowadays that everything happens for a reason, because if I was to get a donor straight away after the three day stay, the extra weight that I'm carrying would have impeded my recovery rate.
Makes you think doesn't it? Just wish I could stop thinking about food all the time though!!

Lots of love Debbie x

Full moon is coming

Tonight is the first Saturday in an age that I have stayed in and not really worried about going to the cinema, which is a tad disconcerting.
Ann is feeling off colour with a jippy stomach. I think she had eaten too much last night, as I had too. I suppose that our stomachs just can't take big meals anymore after being on this diet.
I still feel bloated and lethargic even now.
The second reason was Lynn had lit the first fire of the year in her cottage yesterday, as the inside of her cottage was getting quite chilly of an evening and of course where our wonderful British weather has been so unpredictable, the temperature suddenly went up again outside and left her front room feeling like a sauna.
I do have to admit that I was very glad that I had a thin sleeveless top on under my cardigan, as her front room was a little bit too cosy for comfort at one point!
So I think the two combined was overload for Ann.

For me, I thought with the amount of exercise that I achieved yesterday, that by rights it should have knocked me out till late morning, but alas no.
I got into bed and as soon as I starting dropping off to sleep, my legs decided they wanted none of it and were insisting on partying.
Every time I thought I had conquered this restless legs syndrome, they would start twitching and aching again. I twisted and turned for hours trying to get comfortable with no joy.
And it was really mild outside, which made me even more fidgety.
I also got tangled up in my oxygen tubing where I was moving about the bed so much, scarily so when I found it wrapped around my neck a couple times. I must have dropped off to sleep at one point and woken up with a dead arm too, where the tubing had twisted tightly around my arm.
Then of course, when things started to settle down in my legs and sleep started to wash over me, I needed a wee!
The moon is leading up to being a full moon on Monday and you may laugh, but I do find that I am affected by the moon's cycle. If I am feeling unexplainable tetchy, if I look in my diary, then nine out of ten times we are very close to a full moon. That and the strong winds we have been feeling just lately is no wonder that I feel like a blue touch paper!

I woke up today feeling like death warmed up as expected .
Luckily I was booked in for a massage on my neck, shoulders and back, as my shoulders are so sore at the moment. Whether from lifting the weights, carrying my oxygen unit or swimming yesterday, I'm not sure. But I do know that when I try to get something off the back seat of my car while sitting in the front, that movement of lifting up my left arm, can reduce me to tears.
Also where I haven't been producing much off my lungs the last couple of days, it has now decided to shift its self and I have been coughing and bringing up phlegm most of the evening.
Generally I just feel out of sorts today. Still, life goes on, so does it really matter that I stay in for once on a Saturday night?
Most people who know me will say the same, that I have this fear of not cramming in as much of life as I possibly can and sometimes this leads to my own downfall.
So I feel I need some jump leads attached to me to give me a much needed boost, a glass of Epsom salts to clear out my stomach and oh yes a double lung transplant!

Lots of love Debbie x

English Channel this way

Yesterday I was really tired from pushing myself too hard, so what did I do today? Went swimming and then off to rehab of course, as you do.
I am now so tired that the words on this page are jiggling about in front of my eyes, but it's a contented tiredness I suppose, in the fact that I have achieved something, well apart from cramp in my toes when swimming and aching joints now.

Firstly, I swam ten lengths. I know I did this time, as Jean was counting them as well for me.
I brought myself a woggle from the reception at the pool, so I could use my arms more and build on my upper body strength and it did help me get the movement going in my arms, especially when on my back.
I was actually motoring at one point, believe it or not.
For a few minutes when we arrived I was quite pleased that I had paid to get in and brought my woggle all for £8.60, till I remembered from last Saturday that the woggle a fiver, which meant that the young girl thought I was a pensioner!

After swimming, we went off to have a bowl of soup before going on rehab, and although I felt stronger, I was definitely slower. My upper arms are now killing me!
I like to try and better my score each time I go and I wasn't as good today as I was on Monday and I was coughing a fair bit too, which was annoying.
The after exercise talk was on Non Invasive Ventilation (NIV). It was quite interesting and we got to try on the mask and try out the ventilator on a low speed, which I found a bit like being in a wind tunnel. It forces the air into your lungs and knocks out the carbon dioxide, which we have trouble shifting.
As I am like most people with a respiratory disease, I mostly breathe in and out through my mouth, rather than my nose and I felt I looked a bit like Wallace or Wendeline, the characters from Wallace and Grommit, where it was blowing my mouth wide open.
I can't say that was the best experience I've had.

Ann and I went for a meal at Lynn's tonight in Suffolk, which was what I needed after finding out that the carers agency that was looking after mother, can no longer help as mother's carer has moved. More phone calls to make on Monday!
Lynn provided us with a very nice meal and it was very nice to feel full for longer than thirty minutes!
I know that Lynn had made a real effect to make sure the meal was made from my slimmers cookery book, but I really worry as I sit here with a big fat belly, that come Monday the scales will say that I've gained rather than lost.
With the cherry pie last night and the huge plateful of food tonight, I will be very surprised if I've gone down.
Never mind, I have all weekend to lose.

Lots of love Debbie x

One tired bunny

A steady day today after yesterday's flurry of being a domestic goddess, sorting out my wardrobe and the boxes under the bed.
I did feel rather lethargic today and decided that I was just going to be steady all day. My nose is driving me mad with this constant dribbling of blood or filling up with blood and snot all the time. It's a vicious circle of a blocked nose, so I blow it, then where the lining is so fragile from all the oxygen use the blowing sets the bleeding off, so then it fills up again with dried blood.
I've permanently got a finger shoved up my nose! I thought I had passed those days in infant school.

Went to see Reni who was back from seeing her folks in Hungary. So good to have her back again not just because she cut my hair again for me today and I felt instantly better for it. It is strange how a simple thing like a hair cut can either reduce you to tears or make you feel so much more assured. Luckily I was the latter.
She is a lovely daughter-in-law and it's so good to have her in the family, as we get on really well. Oliver calls us the ladies that lunch!

I don't think I have a infection, though maybe there might be one brewing I suppose, as I am showing some of the signs. Headaches most of the time, tiredness all of the time, horrible taste in my mouth, but I'm bringing up smaller amounts of phlegm and not to manky in colour, so that's not the usual patter of an infection.
I rather think that I have just done too much over the last couple of weeks and it's caught up with me. I must remember I was retired off for a reason.
A sample would tell, but I've been unable to bring anything up until after the hospital collection has gone.
I also have an annoying twitch in my left eye, especially when I get tired. I'm sure people will think I'm a right old delusional tart winking at people, either that or they think I'm a poor old spinster with a twitch and lives on her own. Hell, I'll start being nice to cats soon!

I was invited to go round to my friends, twitch and all and join them for something to eat tonight. My friend's husband was in charge of the shopping and had been given a strict brief by my friend.
No creamy sauces, only skinless chicken breast and was told something fruity and not too rich for dessert. Bless him he thought that cherry pie was the healthy fruity option.
Oh my... that was soooooooooo damn good.
They did say just to leave the crust, but I'd rather starve tomorrow then let that go to waste. Mmmm heaven.
Won't be getting a weight loss this Monday me thinks.
I'm still tired, but I'm a happy full bellied tired bunny!

Lots of love Debbie x

Nesting urges

Blimey if I didn't know better, I'd think I was pregnant with all this nesting that I've been doing today!
Talk about out with the old and in with the new, although there is no new coming in.
I have given my wardrobe a real overhaul and filled a large sack full to the top with old clothes, underwear, shoes and scarves all for recycling, plus a large holdall of good stuff, but now too large for me, to eBay.
I still have a few things hanging up which I can't quite make my mind up about, but I'll take everything out that's left and have a trying on session when I have the energy.
Probably this time next Sept!

I think it's this fear that when I go into Papworth, that people will look at my bedroom and think that I am a right untidy wretch and plus I have clothes hanging up that I have forgotten about too. Plus it's easier if I want Oliver to bring a certain outfit into the hospital, if he can actually see the wood for the trees!
Plus, If I'm losing weight, then I better wear some of the new good clothes that I brought when I retired and stop saving them for best. As best time never really comes does it? When it is time to wear them, I'm having a fat day or it's raining hard and I end up in my old faithfuls instead.
So a new me, I'm going to stop slobbing about and start looking good.

I even brought some new boxes to store things away properly under my bed. Of course they were right in the furthest corner of B&Qs that you could imagine and I hadn't taken my 'go faster' walker with me.
This is when I know I've got a lung disease, that and when I'm bending over the bath, washing off my hair colour.
I was absolutely shattered after doing that task tonight and by the time I had regained a steady breathing rate and I had stopped feeling dizzy, my hair was dried flat to my head!

Ah well another day tomorrow!

A couple of good chats over cups of tea

Blooming heck, we have fast forwarded past Christmas and straight on to what seems like March outside!
I laid in bed this morning and believe you me, I was scared to open my curtains as there was banging and crashing as flower pots were being blown over and I wasn't sure if it was my new shed that was moaning and groaning in the strong winds or what. My poor rotary washing line is now left doing a jolly good impression of the Leaning Tower of Pizza.

Really had trouble getting going today as I felt so lethargic this morning and had only just got my breakfast, when I had my expected company arrive on my door stop, but on time on this occasion. I gave my apologises and had to eat my breakfast in front of them.
I met one of the ladies in the village charity shop at the beginning of the summer and we got on really well chatting away. The next time I met her, it was quite by accident on my doorstep in fact as she is a Jehovah Witness.
I really enjoy her company as we do talk about everything and anything and yes, the bible too. But I have a fascination about all religions and although I am a bit of a pick and mix sort of woman when it comes to religion, I do believe that all religion requires the same basic, for you to be a good person and besides I enjoy asking her questions.
My new friend seems to get me and we get on well, but I think I am just too weird for some of the friends and family that she brings to meet me.

She was telling me a story about when she was once standing on a mountain top in France when visiting her elder sister and was overcome with the beauty of what she was seeing all around her.
So I told her my story of when I was on Ben Nevis, I won't say the top, as a mountain goat I ain't, but as far as the cable cars could take me and some.
It was when I was fitter of course. I had left my mother at the bottom having a cup of tea in the little cafe in the gift centre and I took myself off to the near top. You couldn't come to that part of Scotland and not go up if you were able.
There was a huge sign as you left the cable car station, saying 'do not pick the heather' and after I had took in the amazing panoramic views, me being me gingerly sat down on the mountain side, looked all around me and was just about to sneak a piece of heather away into my pocket, when my mobile phone rang... I thought it was God himself about to give me a rollicking for stealing!
Of course it was Julie, who had phoned to ask what I was doing and how was the holiday going. Once I swallowed my heart back out of my mouth and where it should be back in my chest, I called her a string of rude names, which was unfair as it was me that was contemplating stealing and she is my soul mate after all, so I guess she knew to call just at that right time to stop me from error of my ways.
Luckily, both my guests thought the tale highly amusing and weren't offended.

This afternoon it was back to hospital for physio and a chat. I complained of a thick nose, a grotty taste in my mouth and feeling very tired all the time. Maybe I have been overdoing it in my bid to impress Papworth or maybe I have an infection.
Both could be possible, especially the latter, seeing that the rehab whinger was complaining last Friday that he had another infection, but carried on coughing without covering his mouth while standing next to us.
Now that is just not cricket.
So tomorrow, normal procedure, sample of phlegm in a pot and drive it back to the hospital for testing and fingers crossed it's just a summer cold from the weather chopping and changing, and I'll slow down on trying to be superwoman from now on.
We had quite an interesting chat about the forthcoming test at Broomfield and what happens next at Papworth.
Whenever I have these chats with the physio staff, I actually do believe that this transplant could very well happen soon and that I will get my happy ever after ending.
I know I talk about the transplant all the time... sorry folks... but sometimes I forget that I really could be lucky and it's not a figment of my imagination. And that would be worth more than all the flash homes, cars and all the money in the world. That I could work again and be part of things again.
Driving back from the hospital, I got beeped again from a driver behind me who thought that I wasn't speeding on to the roundabout quickly enough for his liking, after all I had held him up for all of what, 4mins?!
I have decided to get a bumper sticker done saying that 'Hello... I am waiting for a lung donor, I don't want to become a donor myself yet thank you!'

Lots of love Debbie x

I love sparkly stickers!

Whoa hoo... victory dance has been going on around the front room for a while now, as I have lost another 2lb, which means... trumpet fanfare and drums rolls please... I have already lost just over a half stone... Yesssss!
Yes, I am slightly excited as you may have guessed.
But now I have another sparkly sticker to stick on the front of my slimming bible and if I can keep all this extra exercise up, then I may get another one too for motivation.

Today at rehab, I kept myself away from the constant moaner and tried to up my game as much as I possibly could. Looking at the results of today compared to Fridays which were performed in the sudden heat, I had got back on track and gained some.
I don't care if the whinger thinks that I am Hannah's pet, my goal is being given a second chance and I am not going to be reason why I can't have the transplant. There are hundreds of reasons that could stop it going ahead, but I don't want it to be me being complacent and lazy.
I am now willing the next sixteen days to speed by, so I can get this 24hr pH and Pull-through manometry examination under my belt, the results back to Papworth and then myself back to Papworth for the three day stay, where I can stun and amaze them with how hard I have been trying to get fit for this transplant. I may even show them my stickers!

It wasn't all health orientated today, as I went out for lunch with Rosemary and Bill, to catch up with how things are going since Rosemary gave up work at ARU. They are a lovely caring couple, so I hope she adjusts as easy as I did to being at home.
I'm getting to be quite canny since giving up work, as we used the voucher that came from this particular restaurant through the post for our lunch today. No point spending extra money when you can swallow your pride and use promotional vouchers is there.
I'm going to start a WEA course too soon in the village and hopefully I can sign up as a concession. It will help pass the winter nights, I'll be learning something new and I'll be saving some money, so bonus.

I woke up in a lather this morning, as I could remember Reni and myself signing up for a trip to Bressingham with the Friendship club in the village. It is the club for the village OAPs, but we were allowed to go as I'm an honorary one and Reni is cute!
Anyway, for some reason in the middle of the night, I remembered that it was coming up quite soon, so I went looking for it in the dead of the night and found it tucked away not at all where I thought it was. When I checked the slip of paper with the dates on it, it was for Tuesday, which is tomorrow... Oo panic.
Luckily, the lady organising it had forgotten to put us down for two seats, so we were excused.
I don't know about the doctor testing my mother's memory, I think that they should check mine out too!

Lots of love Debbie x

Thank your lucky stars

And we are back to normal...rain and lots of it! Luckily it held off until mother and I had got to Maldon for our picnic, but it did scarper any plans of me going for a fitness building walk down the prom and judging by the envious looks of people sheltering unsuccessfully under trees from the torrential rain while we were in my car munching on our dinner, the walk can wait.
I'm happy to report that there no ill effects from the swim yesterday and I shall certainly do it again, only next time with a woggle... my name for the foam sausage type of swimming aid... so I can use my arms better and build up my upper body strength more. Although the float was excellent to give me confidence, I couldn't use my arms enough and one arm at a time tended to send me in semi circles!

I'm still feeling really tired at times and I do feel a little out of my comfort zone in not having my 'docobo' still at home, but I have to wait for a Sim card unit instead of using the phone line to work it, so I must learn to be patient.
The docobo gives me a pointer of when to take things that little bit more carefully and as my stats sometimes have a life of their own, it makes you feel that bit safer as there is also someone reading the results at the other end.
I still have at the back of my mind that time when I walked into rehab and felt a little bit light headed but not unwell, but my stats when Hannah took them, were only 73 and I had them breaking out in a sweat with their fingers ready on the 999 button if they didn't rapidly improve!
Thankfully once I sat down and zoned out all was fine, but it was a hell of a warning to me that being breathless is not the only sign that your body is in trouble.
I do have a habit of pushing myself a little bit too much at times over the years and paying a high price, but I am learning all the time.

Ann and I threw caution to the wind and went to see Fright Night at the cinema. We don't do horror films, but this was supposed to be a comedy too, but no I won't be sleeping with my windows open for some time, so perhaps just as well the weather has fast forward into late Autumn.
Driving home though, the moon in the sky looked rather imposing even though there was only half of the moon showing, but just as I got home, I saw a shooting star.
Perhaps that's why the moon was shining so brightly, to get me to look up at the sky perhaps?
It wouldn't take a brain surgeon to guess what I wished for... to get my new lungs and for a fairy tale ending so that all ends well.

Lots of love Debbie x

Going for gold

Who's the mumma then? Tis me! And why is I the mumma? Because I went swimming today and completed a whole nine lengths, well I think it was nine, but it might have only been seven as I lost count when I had to get out to go to the loo, but who cares as that is a hell of a lot of swimming for me.
I did have to have a swimming aid in the shape of a float to help me in the deep end, just in case I got into trouble with my breathing, but I felt fab at the end of it and if I could have had a gold star for achievement, I would have worn it all day stuck to my forehead with pride!

It was such a hot day out there, that while we were drinking our treat... a cappuccino... outside a laid back Prezzo's, we could have been forgiven in thinking that we were abroad if you overlooked the fact that behind the wall, there were hundreds of cars parked in the Freeport car park where people were trying to find a bargain in the retail park.
If only we could have had a few more lovely hot days like this, then it would have been a good summer and not the depressing excuse of a summer that we actually had instead.
My mind has been tricked and lets face it, it doesn't take a lot to trick my mind, but with these sudden hot days and warm nights and with Celebrity Big Brother playing on the TV, I keep thinking that we are at the start of summer and not four months away from Christmas.

It has been a busy day today, as my friend came round again to give the bungalow another good clean through for me. Especially this time the windows, as some little brats thought it would be amusing to throw an egg at my front room window.
Far from pleased about that and so will they be if I find out who they were. Makes me nervous about Halloween though, if they are up to those tricks now.
But it really helps me to get the bungalow all sparkling so I can keep it looking nice in between her visits and I think tomorrow the gardener comes and I am so anal about my hedges looking neat and tidy!
Later on, Ann and I went off to the cinema to see 'Friends with Benefits', which was a really good film. Most enjoyable.
I do hope that the man who was sitting only a seat away from me, wasn't too distracted from the film with my loose cough that decided to kick off at one point. The down side of swimming maybe, loosening up my chest?
I was worrying at first as I was beginning to feel a bit sleepy as I sat there in the dark, but it really was a what I call a feel good film, which kept me alert all the way through and now I'm hoping I will sleep like a log tonight.
I think I must have been injected with a massive dose of hope when I went to Papworth, as I have come alive again.

Lots of love Debbie x

Heatwave time

Well this is a turn up for the books, sunshine for two days running and even better, I started the day off having coffee in the garden with Jean while sunning ourselves and then at night, were sitting out in Ann's garden until 10pm eating and drinking. That is until me being the wimpiest out of the three of us, started getting chilly and we had to move indoors again.
But shouldn't we have been doing that all summer I ask?

What this sudden heat wave did mean of course, was having to do the exercises at rehab in the heat... not good. In the wall step up exercise, even my legs had broken out in a sweat.
Although one chap was still moaning nonstop as usual, so he couldn't possibly be using the same amount of energy as we were as we were too knackered to speak, let alone moan and grumble through the whole exercise and we all know men can't multi task!
I can't abide the bloke and he doesn't like me either, as he told me that he couldn't stand people like me that believe in all this positive thinking rubbish... just call me Pollyana then! He is such a whinger and rude to the physios too, although he thinks he is being amusing. Please God may I never be in a hospital ward with him!

I had to take mother to see the doctor after rehab, to get her blood and urine test results and thankfully all was ok.
Bless her though, she also had to do the memory test to assess for dementia and alzheimers and although she got 21 questions right out of 30, her poor face when she couldn't remember the year we were in or the date, was heartbreaking as she was really panicking as her mind had gone totally blank.
It was one of those moments where if you get a couple wrong, you then start going blank until you get something right. She kept looking at me to get me to help her, but of course I wasn't allowed to, although I did try to push her in the right direction before I got told off by the doctor.
It reminded me of when my boys first started school, they would look at you with beseeching eyes and you knew you couldn't help them as they had to do it for themselves.
I felt a right heel.
One of the questions that threw her straight away, was what month was it, so when she was panicking, I asked her what month was my birthday in and what month followed afterwards, trying to get the doctor to see she still remembered the order of the months at least, after all we are only two days into September. Trouble was she said my birthday was July! She got there in the end though and remembered the actual date.
I can't remember the date at times, especially since giving up work and when you are 93, all days are the same really.
The doctor asked her to write a sentence down and mother wrote 'Am I going mad? I really hope not!' which made the doctor smile.
That's got to get her bonus points surely!
I don't think the doctor was unduly concerned about her, I do hope not.
I rewarded mother with fish and chips and she didn't seem unduly concerned or mentally scarred either, so perhaps I'm just the worrier?!

Lots of love Debbie x

There she blows me hearties

I am ashamed to say it, but I was the instigator of chaos and mayhem in my poor old mother's bungalow first thing this morning.
It was all for a good cause, which I tried to tell her and myself as she was giving me non stop dagger looks. And that is getting a rail put in along her garden path so she can go out into her back garden safely without hanging on precariously to the washing line to get to her garden table and chairs, but everyone arrived at the same time and that really threw mother.
The carer was late and turned up at 9.45.
I met her as I was walking over to mother's bungalow to meet the other lady from the community housing, who was coming to talk about the rail at that very time and who arrived within minutes of me going through the front door.
You can't blame mother for getting a wee bit tetchy with the carer who was trying to chase her into the bathroom to make her shower and at the same time the community housing lady following her aroud asking her loads of questions.
It stressed me out and I wasn't even standing there half naked like my poor old mother was! I did tell the housing lady when she rang to make the appointment, that it was a bad time to come round, but no, she wanted to see the carer in action.
Still, I got her to agree to the rail, even though at first she said it was a no no.
I did detect a smug smile over the phone when I reported back to my sister, that my life was going to be hell that day, but no it wasn't.

To make it up to mother, I took her to Maldon for a picnic as that outing always calms her and she always enjoys it whatever the wather. And bonus the weather today had remembered that it was supposed to be sunny at this time of year and it actually felt hot out in my suntrap of a back garden. So something was on my side.
It was a different story though when after our picnic, I decided to take my 'go faster' walking frame and go for a stroll down the prom while mother sat and read her magazine in the car.
It was a bit of shock to the system as I walked along the water side and I had to turn back to return to the car, as I was getting goose pimples on top of goose pimples where it was so breezy, and I then walked right into a strong head on breeze.
To most people, it probably wouldn't have bothered them, but to me, I felt like Harold Lloyd in that famous black and white movie of him walking at an angle in a gale force wind. To say I was out of puff when I got back to the car was an understatement. Still this time last month, I probably wouldn't even have had the courage to attempt it let alone been able to even walk it, so all the exercise is helping. Got to be extra brownie points for that for when I get back to Papworth surely?

How long this spell of good weather will last is any one's guess, but it's a case of enjoying whatever the wind blows in!

Lots of love Debbie x