Rhodes

I am well and truly home! Within an hour of getting back, I had swapped my tshirt and shorts for fleece pj's and even went as far today as to buy a new fluffy dressing gown to keep me warm. I have a feeling this winter I will be doing a lot of snuggling up in its warmth.

In contrast to while I was away, I didnt see a single drop of rain the whole time I was away. It was a wonderful holiday, even if it was a little aggravating.

The night before we left, I started with a migraine, that developed into the worst migraine I have ever experinced. I was dosed as high as i could on a variety of meds, but up until 30 mins before the taxis to the airport was due, I still had my head down the loo and could not open my eyes fully. I got some odd looks going through security wearing sunglasses and although I wasnt sure if I would be allowed to fly, I had managed to get most of the symptoms under control by the time I got to the airport.

The migrain continued off and on for the next 4 days unfortnley, but I still managed to get out do things, if a little slower than I would have liked. It was after all a relax type holiday rather than an active type holiday, which helped.

There were so many memories I wish I could bottle up and keep, to pause a moment in time and recall every detail of it for many years to come. Simple things, like lying on the beach, a slight breeze keeping the air comfortable and the sound of children playing. A dad wrapping his daughter in a warm towel, a mum moving a sleeping child to the shade, the sea reflecting the sky. Every part evoking its own memory deep within me and still keeping hold of the current memory.

It was such a pretty place. You could barley tell where the sea ended and the sky begun. We were lucky, the place we were staying was way out of the commercial area, it was quiet and most touristy type places had already shut. The beauty of the place was stunning.

 It helped that we were high up so the view from the balcony was breath taking. I sat out there at least twice a day, running my treatments, I was very proud, I didnt miss a single one. Of course, the downside to being so high up, was that the lift only went half way and as the week progressed and my air way detoriated, the remaining stairs took longer and longer each time I had to climb them. But on holiday, there is no shortage of time and so I was able to make my way at my own pace and collapse on to the bed as soon as I got into the room.

We had a wonderful meal, in a restaurant on top of a building. It seems the way there, to lead you up a narrow entry and you seem to go up and up and up, until eventually reaching a restaurant on the roof, with views across the whole city.

You can see from the doorway, all the way up to the roof.

And once seated, you get a great view on all the layers back down.

Not to mention across the entire city. We also managed to time it right to have greek musicians playing the whole time we were eating.

Even on the days were I was unable to leave the room, I felt a peace. I could lie on the bed and gaze out across the balacony. My parents seemed a little annoyed that I was unable to keep up with them, after all they are both in their 60's, but they under stood how much the heat wiped me out. They bought food and drinks to tempt me and did there best to keep me cool, even when I was so far asleep I could sleep through them talking to me.

 On the good days we made the most of the time and ventured into the towns. Everything was so colourful and bright. There were so many things to see and do and smell and just take in.

And, even after all these years (44 to be exact) it is nice to see them still so in love. I have to recall these moments sometimes, the laugh and smile of my parents when they seem care free. Some days, it is easy to lose sight of their comittment. Admit the stress of everyday life as well as medication side effects, they have a tendency to snap at each other, to shout or complain for no real reason. But I think I see them being the old couple in the nursing home that the staff still have to shout at for rowing over simple things like where to sit. Hopefully they have a very long while before they hit that point though.

And now I home, I feel rested, though not yet strong enough to make any plans. But that shall follow another day. For now, I am holding on to these memories tight, for they are strong and warm.

Hope

Another quick one unfortunly/hopefully. I have to be up at 5 am and the only reason I am writing now is because I am running treatments before bed. Plus I have a migraine so more reason to sleep.

I was a little delayed getting out of hospital. By little I mean I mean about a day and half. I felt like crap the day I was supposed to come home and though I knew I could make it home and then sleep, pharmacy messed my prescription up. So by the time that came, I was a little wound up, it was getting dark and I was tired.

Actually, at one point I did leave the ward for an hour to hide and wrote a kinda depressive entry on my phone. I will see if I can get it to post in a bit. Things were just winding me up. I was in with a person who has a similer issue as me, but with a better outlook. She was last in hospital 3 months ago. And well, as this is public I wont write much, but you know how you can try so hard to keep your health going and then other people who are polar oppossites end  up just irritating you. Well yeh.

So anyway, I stayed an extra night to refresh and such, but that of course meant less time sorting things once I was home for going away. So I am a little stressed out right now and kinda functioning on auto pilot. Hoping that the time away with plenty of rest will do me good. Though still feeling a little ill, but I have paid a lot of travel insurance.

So whats next. Well, on an up note, my surgeon and I have made a new plan and I am fairly hopeful for it.

About 2 years ago one of the first operations my surgeon performed on me, was called a tracheal resection. Bascially what they do for the resection, is they take a piece of cartilage from between your rib bones and shape it. They then insert this into the trachea to open up the airway more and cover it in skin grafts. Right now, that bit of cartilage is still in my airway and doing a ok job.

Now the problem is, if you feel between your rib bones there really isnt much cartilage there. It is very painful to take and has a purpose of allowing your rib cage to move. This means they can not take too much of it. This is were the complex bit is going to come in this time.

The plan is, to take the cartilage  as much as he thinks he can safely get away with. He is then going to bury it into my my left arm and attach it to a blood supply. The hope of this, is that once the cartilege is in my arm, it is safe from infection, but it will have room to grow bigger, allowing him to open my trachea up more. Its complex. It obviously involves multiple areas of surgery and a heck of a lot of pain. But pain can be managed and hopefully, with the extra cartilage  my airway can be better supported and I can breathe and talk again.

Thats the plan anyway. I am not sure how long my arm will need to house the cartillege, but hopfully it will go in to place at the start of December. That gives me time to do my 2 holidays.

And it is of course hope. I may just get through this and if not, perhaps it will buy me a little more time until transplant becomes an option.

Its big, im not saying it not, but it is worth the shot.

I dont think I will ever be able to express my full gratitude to the team in charing cross. From the surgeons, to the anesthtics the nurses, the assistants. They all keep me strong. And I have confided a lot in them this week. This week was a tough one. I was honest about a lot of things with some of the staff, before I dont think they realised where things were heading. There are some staff that go way beyong there duty, be mugs of hot chocolate at midnight, hugs when you look down or even a text. On one of my rough days, one of the nurses had exchanged phone numbers with me, I often talk to her and visit the ward to see her if I am in clinic. She told me that her and some of the other staff were always blown away by my bravery on the ward. How I face everything head on, make the most of it and manage my symptoms the best I can. It probably sounds cheesy and silly, but right that night, it was what I needed to hear. It helped me face the long night ahead. As I say, I dont think I will ever be able to fully tell the staff how much they have all meant to me.

So a plan is in place.
Things feel good at the moment.
I am looking forward to some time away from everything.
And to add to boot, mum finished chemo last week and today she got the all clear from her bone scans as there had been a worry that she had some secondaries. But its all good.

And for now, see you next week.

Good things come..

.. to those who wait.

I wanted a break, some good signs, something to lighten the dark bits that were begining to feel heavy.

I got them, I got them so good and it was so worth the wait.

Im being cryptic, let me explain.

Recal the who visa fiasco, and telling a 12 year old she dosnt get to go to Florida after all? Well after a lot of begging, much frustration, many phone, some tears and almost going mad over it, I got an email on tuesday to say that they would issue my visa, but it would take 5-10 working days, I had 6.

As fate would have it, I was in London at the time and as a result of having an amazing friend, I was able to stay an extra night in hers and get my passport to the embassy early Wednesday night. (Thank you!! I owe you big time) They have rushed the visa through for me and I have just recieved message to say that my passport and visa will be back in my hands before the weekend. YAY!! Big time.

So happy. Though it means there is tons to arrange. From cars, to medication, medical equipment and supplies, a place to stay and insurance. I am slowly working through the list, though the travel insurance is the major hurdle now. It is about £500 for my insurance, and that is with the few companies that will insure me.

I was in London on Tuesday to discuss where to go to next with my surgeon. I really cant praise my surgeon enough, he is one fab guy. The purpose of having the trach in, was to prevent me spending so much time in hospital, to improve my breathing and my quality of life. So far, it is having the opposite effect and I am in fact spending more time in. So we need a new plan. He has a few ideas, and I will detail them in another post at some point, but in short, once I get back off my hols, I will be addmitted for a while in London and will lose the trach and try something new. It sounds odd that the prospect of surgery excites me, its not that, its the hope that surgery offers, that there is a chance, no matter how slim, that things can change. 

So I got my break big time. I kept the faith and I guess I am quite proud how I did deal with all the disappointments of the last couple of weeks. I think in a way, it shows how far I have come, not long ago, I would have crumbled and been a mess.

Oh and I almost got readdmitted to hospital last night. I feel very rough, cant stop coughing, my muscles and joints ache so much and I coughed so much that my tea refused to stay where it was meant to. I spoke to the ward, they made sure I was ok over night, I was really looking forward to a night in my own bed. Then I was reviewed this morning on the ward once again. Although I have a temp and look like death, I have only just finished IVs and I am still on oral meds, so we think its viral. That is good news. Just means, that I have to get plenty of rest, plenty of fluids and stay drugged up on painkillers. Whilst I dont want the painkillers, as they make me sleepy, I need them regardless, as its painful to cough, but if I avoid coughing, it will build up on my chest once again.

Hopfully, this will clear by the weekend. I slept the majority of today and feel better for it. so yay, good news all round. Keep the faith, the sun always has to show at some point. And I get to see lots of sun when I go away in 5 sleeps!!

But for now, I am doped up, hooked up to my machine and off for some sleep imposter Bear.

Christmas Markets.

I am having trouble with my humdifier and I am unsure on how I can go about correcting this one. The nights I sleep with it, it is held in place across my face by a piece of elastic and then a second clip around the neck. the last two nights however, I have awoken with it in my hand. It wouldnt just pull off as it would have to go over the head, so the only assumption I can make, is that while I am asleep, or even half asleep, that I am pulling it off. So not sure on how to get around this one. However, the coughing is not really getting any easier and at one point today, I was almost in tears when I coughed as my muscles are hurting so much. So tomorrow I have a GP appointment, though I have no idea what I need this time, as I dont have a temp and I still have good air entry to all parts of my lungs. It dosnt feel like an infection, more like an irritating cough. We shall see.

Anyway, as I wanted to post, my photos from my hols.

After traveling through the night, we caught an early boat across the channel and stop at Lillie Market in France. It was only a small market, but the smells were wonderful. Mulled wine was served everywhere with many other drinks and goodies.

There was a fair ride and a large Ferris wheel, that would become another common thing amongst the markets.

From Lillie we headed to the boat, where our luggage loaded and we were shown to our rooms before being served a four course meal. The tables were set to seat 6, but ours just had 5. To my right were two sisters who were traveling together and to my left, where an older couple. Over the course of the holiday, I really hit it off with the older couple and spent most evenings in the bar with them. He had chronic COPD and until recently was pretty much house bound on oxygen. Doctors had told him there was nothing much more they could do to help him, but a few weeks before he had had a heart attack and when they looked at things, his arteries where mostly blocked. Since then they had been repaired and he was now able to breathe a lot better than he had. So he was making the most of it and had booked a last minute get away around the same time I booked. It was funny the amount of stuff we had in common. As I spoke more to them, they told me that they had a son, who had died a long time ago, but he was born with airway problems and so had a trach in most of his life. They joked that if I were to get ill, they could fit me a trach, having had to perform an emergency one at one point. He was also a camera enthusisast. He used to own a lot of expensive cameras, but sold most of them when he thought he was dying. He gave me a lot of advice on lens and loved looking back over my photos. He was a very old fashioned gentleman and wouldnt let me buy drinks and such. I could have spent hours talking to him.

On the second day, we had to be up early. So after a buffet breakfast, we went onto Valkenburg in the Netherlands. They have a underground cave, that used to be used as a secret entrance to the castle. Now they host a market in the cave, all lit by fairy lights.

They had themed it as Father Christmas bedroom and the elves chasing through the caves. There was lots of drawings on the walls of the caves. amazing art work. All done with soot from the fires, mostly from the time of the war. Very sureal some of it.

The town itself was also very pretty, though it was very wet the morning we were there. After going back to the boat for lunch, in the afternoon we went to Liege.

There market was very spread out. I got so lost and it was wonderful. No idea where I was, yet so much to see and do and it didnt matter that I didnt know where I was. 

Again they had a ferris wheel.

I also visited their Catherdral whilst there. 

I lit a candle whilst there, in memory of those lost and those in my heart. Eva, Bree, my Nan, my donor and spent a few moments peacfully reflecting on how each has touched my life.

That night was clear and dry. After taking some pics from the top of the boat.

And talking in the bar for a while.

I decided to go for a walk across the road to Maasterich, where I fell deeply in love with the town.

The ice rink was right next to the catherdral and the mood was wonderful.

Again they had a ferris wheel.

I spent a while just sitting here. Cup of Mulled wine and perched on a stool watching those on the ice rink. Christmas songs where playing and I just felt so content and relaxed.

The next morning was to mostly be cruising on the boat, but everyone was mainly in the bar where there was a quiz and other games. I planned to go back to Maasterich that morning instead of cruising, however, I had difficulty waking up and had had a bad night sleeping. In the end, I stayed in my cabin and slept, to let my body catch up and I think it was for the best.

That afternoon, after lunch, Aachen in Germany.

This was a huge market, spread around a catherdral. More stalls here than anywhere else and so many hot baked goodies you would not believe. The shops were crowded with shoppers and the window displays wonderful.

Gingerbread seemed to be the biggest seller

It was so pretty, though very wet and windy.

That night after tea, I ventured back to Maasterich to soak up some more atmosphere for an hour. I took some pics of the boat but generally just chilled out.

When I got back, I sat and drank cocktails in the bar with some of the people I had been talking to. It was the night of my transplant anniversary and I thought this was a suitable way to celebrate. 

The next morning was an early start to begin the journey home, with just enough time to stop at Bruges on the way past.

 

The buildings all decorated and the hourse drawn carriages carried such charm. 

From there we began the long drive home. I said goodbye to the people I had met on board the boat and on the excursions and off we went, where I arrived home at 6am. It was exhausting, but wonderful and I cant wait to do it again.

The wanderer returns

From the title, I'm sure you can all tell that I am back. =D

I had a good time, surprisingly after a rough start, but things did eventually begin to settle (as the weather got warmer oddly enough) and I am pretty much back to normal now. Still some possible infections, for which I need to run some swabs and I see my consultant Monday. So overall all good.

I was going to make a couple of updates while away. I bought internet credit as some places had wifi I could pay to use. However, after paying extortiant rates for it, the connections where really lame so I ended up using it mainly just to keep up with my emails. (South of France charged me €15 for 3 hours. Italy was €15 for 5 days. Frances didnt connect half the time and ran slower than dial up when it did. For the first 32 hours in Italy, I thought it wasnt working right as it lost connection every 4 minutes and was slow. However, I soon discovered we had a power cable running above our roof and the van was also made of metal and so would not let wifi signals through :/ After that I learned to charge my battery and go sit on the bench up the road a little.)

For the last 2 weeks, I have watched the grape vines grow.

Seen some wonderful sights.

Watch the sun gown down (countless times)

Admired the poppy fields.

Experienced True love in a holiday romance.

(Aint he handsome. And he looks like he is smiling at me. My torts have a down turned mouth but his makes him look happy. Oh and he came upto about my knee if I stood next to him, so rather a big fellow. Unfortunately my dad wouldnt let me steal him and take him home with us)

Visited St Tropez.

Where all the rich kids were showing off on Daddys boat.

Ate delicious Italian Ice cream in Simeone. (virtually every Ice cream shop, which is pretty much any road in Italy looks like this. But simone has to be the best. Its a little island style place on the edge of Lake Garda. And for a tiny town there are about 5 ice cream parlours plus resturants doing fancy sundays. The choice of flavors is immense, from the usual fruit one to Kinder, Bounty and Mars to more unusual flavors like haribo and bubblegum. A lot of shops trying to get your attention with free samples. nom nom)

Had nutella (Though not a jar this size =[ ) by the bucket load.

Realised the America isnt the only place that specialises in Fast food.

Had some quality time with my daddy.

Shared lots of Love

Eventually annoying my dad with the camera (I have some lovely close up shots of his nose)

Watched the sky change color (while discretely giving parentals alone time hehe (Yeah its still alone time, if i am a couple of feet away taking their photo)

Enjoyed opening the curtains to this every morning.

And closing the same curtains to this every night.

Spent an exhausting day in Venice.

Observed the locals (gondoliers)

And their boats (Gondolas)

Whatched Sinta Marks square transform from dry land, to having a strip of puddle down one side, to 10 minutes later only having one strip of path left.

At which point, we headed for the boat as we didnt want to have to wade through the square if it rose anymore. Oh and as I was having camera fun with the water and lights, we left late and so the gates where closed when we got back to the place we were staying. So I had to climb like a million stairs (literally) as we were on a mountainside hehe)

And then drove home, past all the snowy mountains. Its amazed me since I was very small, how that snow could exist. In the past we have taken mountain roads rather than the tunnel (They charge nearly £50 to go one way through the tunnel and the mountain roads are a lot prettier and more fun to drive. The year I passed my test it was great fun really using the gears on the car to climb narrow windy steep roads up the mountain. We often travel is shorts and t shirt as its cooler in the car (habit from pre air conditioning days). But its rare that the passes are open when we go in May. You get about 3/4 of the way up and then the road shuts as there is too much snow to drive past. We have, before today got out in shorts and had a snowball fight on the way hehe. its not cold up there, well unless you pick up the snow.)

And now I am back home with a mountain of washing and lots of photos to play with.
Though annoyingly, I have gotten home, been using my laptop the whole time I was away. Worked fine the first night I was home. Next morning put it on and its died a death. so it has to be sent off for repair (though its going to take a week before they can pick it up so I dont have much faith) that being said, updates maybe sporderic and not at my usual 3am posting time.

Oh and I am still deciding what to do with all my photos. Obviously I want to tweak some of them, but I still want to show them off. I may, use my other blog, that I have never posted on, to put my photos up, but I will update here, should I decide to do that. =]

Thanks for reading. And feel free to comment and such.