4.3.17

A York Tale...

Once upon a time a girl named Stacie and her Boyfriend decided to pay visit to the historical cobbled streets of the City of York. York was a fine City with much to behold however Stacie's lungs were being total utter poo-bags from the moment they left the lovely land of Norwich and continue to torment her still. This did not stop the pair from having a most joyous time though and Stacie also discovered on her journey that she is pretty sure she's invented Car Narcolepsy.... The End. 

Okay so not really "The End" but that is basically my York Tale in a very basic non informative way :-D. We did go to the lovely city of York though, honestly it really is a beautiful city with history just seeming to ooze from everywhere I felt quite at home there, it felt very much like Norwich to me and feel very much at home here, well obviously as I basically live here half of my time. The journey up there was much longer than I had expected I guessed it would take about 2 hours but nope it was around 4 hours so boy was I wrong. Pre-warning to anyone who ever has to do a road trip with me, I cannot stay awake in cars! Like at all. I've been saying it for days but I'm pretty sure I have some from of Car Narcolepsy if that's even a thing (which it totally is I reckon), no matter what I do I just cannot keep my eyes open in a moving car, mid conversations I'll just be nodding off with my eyes slowly closing and my head doing the whole head bob thing. It's a problem, well not for me just for the person unfortunate enough to be in the car with me :-/ 


I think we really did manage to pack quite a lot in, in the short time we were there. First off we went to the the York Minster, I now know that Minster just basically means Cathedral. I love going round places like that, I'm not religious as most of you know but religion is part of our history and is something that is still interesting to me. During my degree I never got on with the architectural history of things but I can appreciate the beauty and skill it must have taken to build and make a building like that, it truly was amazing to be inside of it. We decided to light a few candles whilst we were there as well, it's not something I've ever done before as I'm never quite sure what lighting a candle is meant to "do" but it seemed like a lovely gesture that would be of some meaning especially in that venue. So I lit a few for lost friends and my donor and it felt special for them.


We then made our way to "Betty's Tearooms," everyone and their dog told me to go to Betty's and you know, who am I to say no to a afternoon tea?! I enjoyed it in there and it was lovely, one waitress kind of ruined the experience for me as she just seemed quite rude and I understand she may have been having a bad day or something but it just kind of put my back up from first interaction I'm sure any other day and she would have been lovely. The tea was lovely though and the sandwiches were actually sandwiches that I could eat, non of this flouncey crap added to it! and obviously my scone was super yummy. It's always hit and miss when it comes to the desserts on afternoon teas but I got kind of 2 out of 3 the chocolate truffle thing was amazing, but their Macaroon was odd it wasn't bad but it was Apple and caramel both of which I couldn't taste at all but it was still OK. Then there was a tart that was just eww but that's because I really don't do pastry so no-ones fault there. 


We stayed in a lovely hotel called the Hotel Indigo so if you're ever there I would completely recommend it, it was really close to everything and made life really easy especially with the wheelchair. Our next day was just as busy, we went to the Train museum which I know doesn't exactly scream excitement or anything but I find that the kind of stuff really interesting and they had some of the Royal trains there!!! They were really cool to see and is it not just really cool to see how we as people have evolved over time in regards to the way we travel?! How at some point in time going a meer 70mph on a train was seen as some kind of death defying stunt and now we're annoyed if it's not hitting it's target of like 190mph. We did some walking around gardens and the river and stopped for lunch as well, it was lovely to just sort of meander and we went down the Shambles as well, certainly can't say that was the best street for a wheelchair LOL. Our evening was dedicated Ricky Gervais, I didn't really know what to expect when seeing him as I don't really have a opinion on him but he was funny, there were a few moments were I was a bit like "Oh that's probably not OK..." but I think with any comedian you go to see you'll get that so sometimes you just have to expect you'll hear some jokes that push the line.


On our last day we just sort of took it easy until we had to check out of the hotel, or I say "we" took it easy, I took it easy whilst Mark ran around crazily packing and making sure we had everything. Honestly I understand why disabled people just don't make the effort to go places sometimes because it really is such hard work for whoever is looking after that person and Mark does so, so much. The plan though was kind of on our way home we would visit a few of the outlying villages of York. The weather was not great but still okay enough that we could enjoy it and my "Car Narcolepsy" seemed to be kept at bay :-D 


As lovely as our trip was, it was tinged by my lungs being utterly awful to me. It's hard to figure out sometimes because it could just be a muscle, it could just be phlegm sticking in there, it could be pleurisy or just a mixture of all of them or you know it could be something altogether different that I have yet to experience and have a name to put to. Whatever the case I was dosed up and still am, I'm paying for the days away at the moment and I wouldn't have it any other way but I do wish my body could just be nice to me sometimes. Why do I have to "pay?" Why does me and my body have to physically pay for a nice few days away with my boyfriend? And not just me really because he in extension pays too because he then has to look after me more not just physically but mentally as well because I start to get down about the fact I'm paying for having a nice time and why can't my body just do as it's told? Charge me £20, £50, £100 I'd pay that! I would just budget it in. Annoying as it is it's the way it goes and just part of my life now, I just need to grumble about it every now and then. At least I got to go away and have a lovely time with my wonderful human and make more lovely memories with him :-)


As always, thank-you for reading and chat soon
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14.2.17

The Options...

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Okay so the weekend just gone saw the appearance of "productive Stacie" now she rarely makes much of a appearance nowadays but she did and boy did I get shit done! It was wonderful to actually feel like I got stuff done and now I feel very much 'Tidy room, tidy mind" it's quite lovely. However Monday hit and well lets just say my bed and I have been seeing a lot of one another lol and that does not seem to have let up. 

So by way of just procrastination I suppose I thought I would write a blogpost. Now this isn't meant to be depressing just to put it out there but I fear the information that I share may possibly come across as depressing or sad or maybe upsetting, for some anyway, if you don't really know me you could probably care less lol. So what I'm going to do is try to explain all my current options and what my CT scan means for me in March because I feel like I have alluded to things but I've never gone into the detail that I and my family receive because sometimes it's even hard for me to absorb and relay that type of information to you guys, but I'm going to attempt to so you can understand the situation better and more entirely.  

So lets start with the "The Ball." This nasty ball of Aspergillus now when I told everyone about this ball/cavity of aspergillus that I have I got a lot of transplant people say to me, "Oh that's fine I had that when I had my transplant," "Oh that's treatable, they'll get rid of it." All completely understandable responses which I totally get, now to explain it in my situation this ball is located extremely close to top of my left lung just under my collar bone. There's the ball which is extremely hard to penetrate with drugs as there's no direct blood supply into the centre to hit the infection, there's that problem first off, secondly it is very close to the surface of the lung so that makes it very easy to penetrate or tear within a surgery which is more than likely as transplanted lungs tend to stick more to ribcages and therefore make them harder to remove. Now thirdly there is residual aspergillum floating around the outside of the Ball which is what we are the MOST worried about it is the stuff closest the surface and the stuff that would do the most harm if it got out in surgery. That is what all this waiting is for we need that gone then we can deal with the rest. Essentially what I have been told is that unless that is gone there is NO option to do transplant because if that got out during transplant I would be dead maybe not immediately but NO-ONE has ever survived having Aspergillus in their chest cavity it just hasn't happened, there's no blood supply in your chest cavity to be able to get rid of it,  you just die, that is it. So that's the vitally important bit.

So now that I've explained that as fully as I think I can what does that mean in regards to my options and the way we move forwards? 

The first kind of "option/scenario," and I'm not going to describe any of these as the best or worst because they're equally as confusing and difficult to contemplate, The Aspergillus goes away and both the consultants and the surgeons are happy to re-list me. Albeit this is still under the understanding that I would still be partaking in a extremely risky transplant operation that has only ever been performed twice in the world.

Next would be that the CT scan shows the Aspergillus receding and improving but not enough that they feel safe so we would therefore wait probably another 6 weeks and then rescan then to see if there was any more improvement. 

Now is when we get into icky life ending talk but the next options would be that there's no improvement at all. In this scenario I would demand that we carry on and wait and see because as they have previously explained Aspergillus can take at least 4 months to clear up so I personally would demand at least that amount of time to see if it was just a late bloomer lol. Now if ultimately it ends up being that there is no improvement whatsoever and we just cannot shift it at all that's when they say no transplant, they just won't do it and won't risk lungs in me as it would be a waste ultimately or potentially. This is sad but it is a reality and one I have to potentially deal with. 

If it ends up that they ultimately say no to transplant it will then be discussions about how we can prolong my life for as long as we can with the best quality we can. I'm trying to view this option not as a death sentence but as me having to live with a chronic illness. With this option it means I  can up meds that I currently can't but would improve pain and inflammation and we would come up with plans to be able to keep my lung function stable and from me getting ill and just trying to keep me at this level for as long as we can which who knows could be years if we got everything right. It would just be about living life as well and not allowing it to get to me. I refuse to accept death as a forgone conclusion in this situation.  

I think they're all the options I have at the moment really. Like I said I don't particularly have a "best" one I personally would like the Aspergillus to do one and for me to have the chance to have another transplant because I firstly think I'm strong enough and I know I can do it but also a bit selfishly I suppose if I am going to die I would much rather die quickly unaware in a operation than slowly and painfully completely aware of every last breathe I took. The idea of that just makes my heart sink. So a tad selfish on my part I suppose. 

I hope this helps some of you who've had questions for me, or who've maybe read some blogs and not been able to totally piece it together totally. I feel like this cohesively explains the whole Aspergillus situation a bit. I'm not sure I will ever be able to explain the whole Chronic Rejection situation to you guys because I'm not sure I'll ever really know either it's just something that happened and I just have to deal with it the best way I can :-)

As always, thank-you for reading and chat soon
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10.2.17

My People...


Like anyone in my situation or in a similar situation to myself I have over the years wondered "Why me?" Why am I the one who got chosen to be this strong, to have to deal with all of this? The thing is I still think that probably everyday but not in a bad way, not in a way that gets me down or upset, just in a way that I wish things could have been different. I've been so happy the past few weeks and I just don't have the drive to be upset about my situation at the moment, I'm surrounded by so many people who love me and want to make everything that I'm doing fun and fulfilling and so full of joy. I'm looking around at my life and thinking "How is it that I got this lucky?" 

On Sunday (5th Feb) the Boyfriend asked if I'd mind going to London with him and his friend who had a "Tinder Date," the idea being that we'd go and just be there in the area should the date be a dud or a murderer or whatever. He even suggested going to The Tate because I've been dying to go there (excuse the pun lol.) I was  bit tired and kind of wishing to stay in bed but I was excited about our friend having a date and thought hey it'll be a nice chance to do a impromptu trip that we haven't planned and see how we do. 


We did the tubes and that actually all went so smoothly and we ended up on the Southbank and both Mark and Rachel needed the loo and there was this pub with lots of stairs. M and R start making a tonne of fuss about these stairs and I'm just sat in my chair thinking "What the hell are they making such a fuss about these stairs for? Just leave me up here and go for the bloody loo" and that's when things started to tick in my brain M was talking to someone as if he knew them and then people who I KNEW were popping their heads around corners. Apparently this was a surprise for me. A tonne of my friends had turned up in London for the afternoon to surprise me and just have a lovely get together for me. The plan was to go up in the OXO tower and have a beautiful Afternoon tea with all my lovely friends. 

It was such a lovely surprise and a surprise it was because I didn't have a freaking clue! How am I that gullible of a person?! It was so lovely because I have a lot of friends from different aspects of my life and a lot of the time they just don't cross over so all of them mean so much to me and they all know of each other but they just never get the opportunity to meet and this was just so fantastic that they got to. 


I don't know what I did to deserve such an amazing set of friends or an amazing boyfriend who would organise it for me but people often wonder how I stay so positive in such a awful situation and it's my people. My people, I am who I am because of all of them they all make me the happy positive person that I am and I am so utterly grateful to have them in my life. 
    
As always, thank-you for reading and chat soon
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