13.5.17

Stacie On the Road: Bonjour Paris...


I know it's been a while but I just have been not busy but just too preoccupied with other things really to get in the mood to write a blog. I'm really into colouring at the moment I literally just spend hours colouring and I am literally ONE dragon picture away from finishing an entire colouring book. Lame that I have enough time to do that or just extremely determined, you decide LOL. 

Anywho enough of my colouring antics, after my rather important clinic appointment that you heard about in my last blogpost Mark and I now that we knew we could just go abroad should we want to basically said "where do we want to go?"and I logically thought hey Paris is on my list, likely to be the easiest trip to try to do for an initial disabled abroad trip so off we went. Now I make it sound like we just popped on a train and left, that is entirely NOT the case, Mark being the planner/organiser of the two of us did so much preplanning to make sure it was okay to go. We had to think about the fact we didn't have a car so Mark would be carrying all our luggage and pushing me in a wheelchair as well. So we had to really think about what we were packing because not only would we have to pack clothes and all the normal stuff everyone has to pack but also; my oxygen, my nebuliser machine, my mountain of medication, marks mountain of medication. It was a lot. Then we had to think about the location of hotel and obviously the more centrally located the more expensive things become but luckily Mark is great when it comes to hotels and we had a lovely hotel really close to the Louvre. 

I do realise I am meant to be telling you what an amazing time I had and I will but I also want you to realise what the realities of traveling with and as a disabled person is like as well because as I have come to realise some people believe that I simply just go and do these things and suddenly become not ill. In addition to the travel issues I suffer from travel anxiety. It's not something that bothers me overly and is something I generally get over once I'm doing it and going but it is horrendous, a few days before this trip I was a shrivelling mess. I've never been on the Eurostar before and I was just very nervous it was new to me and I just wanted everything to go as smoothly and as calmly as it could not just for me but for Mark as well.

Everything did go smoothly though we had a nice close car parking space to the station, we were escorted to the train through security which I was surprised about and awkwardly I had my nebuliser packed away in the depths of one of the bags so when they say "You have a motor in your bag" you have to think for a second and think what the hell that could be and Mark had to make things that much more hilarious and had wrapped it in a scarf that resembled something the Taliban might wrap round their heads, SO awkward LOL. We got through though and got escorted the rest of the way to the train so when it arrived they had their special ramps that helped us on the train and our special spacious disabled spot and I finally felt a sense of calm. We were officially off to Paris and it was exciting.  

Paris and my initial impressions were of how pretty it was I find it less overbearing than London, the buildings much more picturesque and I didn't feel towered upon. I think one of the first things anybody at all, no matter who you are would notice is the driving, absolutely horrendous I thought London was bad but at least they obey the red light law I'm pretty sure about thousand people that I was pushed passed could have died between walking between buildings they seemed a little bit more sensible towards people in a wheelchair though which felt oddly kind lol. 

Initial impressions of our hotel were really great! Mark seemed to "feel at one" with the hotel because as we walked in his favourite artist was playing over the sound thing and basically the decor was a dream for him, it was really lovely and the staff were super friendly as well. The place was meant to feel like a home from home and it really did feel that way to us. We knew going to Paris for just a few days we were never going to fit in everything we wanted to see so we just took it as it came and did what we could. There was a lot of walking, we saw the Louvre and all that kind of surrounding area, we saw the Eiffel tower. We went to the Moulin Rouge and honestly if you get the chance I totally recommend you go and see it, it was really amazing! There were A LOT of boobs going on and the thing that amazed me the most was that they didn't move, like at all and they were mainly real!!! :-O Someone needs to teach me how to make my boobs immovable! The Moulin Rouge maybe need to work on their accessibility, they said they were accessibility friendly which admittedly they partially were to a point but then we came out 2 flights of stairs from where we started and there were still another flight to go down, so along come burly security men who's job also requires them to carry me in my wheelchair down these steps LOL. It was an amazing venue though and something I can only let you imagine as pictures were not allowed. 

I enjoyed being there so much we managed to go to the Pompidou museum and we sat in Parisian cafes and went to the Notre Dam and road on a bus. We went on a lovely river boat cruise, although I did have to deal with a incredibly rude french man at this point but all a part of the experience hey? We went up and down the Seine after a lovely lunch. I don't feel like I missed out on any experience whilst we were there even though I was in a wheelchair, it was such a lovely few days. I won't lie and say it was all hunky dory the entire time because we were both extremely tired by the end of it, Mark walked over 18miles in 2 days pushing me not just by himself! Yes that was our choice and that's the point at the end of the day we took the decision and decided that us being tired and a little tetchy was worth the trip and I really think it was, Paris was lovely!    

As always, thank-you for reading and chat soon
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17.4.17

The Fight Continues...


Well maybe the blog is a little bit later than I promised but don't be mad it's a hard one to write or to organise in my brain to coherently explain really, I'm not even sure I can write it now but I'm going to try and attempt to. 

Right so on March 29th Papworth had their meeting about me whereby they discussed my entire case everything that's happened and where we are or were or had gotten to at that point, this involved surgeons retired and current, consultants, transplant co-ordinators the whole lot. In that meeting they came to their final decision about whether I should be allowed to have a second transplant or whether it was even possible to do anymore, whether the Aspergillus had gotten to a point where it wouldn't be a danger to me all that lovely stuff. They came to their decision. Now whether rightly or wrongly we had agreed to have a phone-call on the Thursday. One of my original Transplant Co-ordinators rang me, I was in a lovely beer garden in one of my favourite places in Norwich, my co-ordinator really did try and convince me to come in and talk about the results but we know me I just wanted to know the answer. You could totally tell that it was not news he wanted to be telling me. I can't remember exactly what was said although Mark very sensibly recorded it so I can refer back to it should I ever need to or feel the need to depress myself. Ultimately and at the end of the day I was told they had come to the decision that I couldn't be re-listed for transplant. 

I am okay with this. I understand the decision entirely:-

- The cavity has gotten bigger which means it is closer to the walls of my lung.
- The aspergillus although better is still there. 
- There is NO way to test the aspergillus and see if it is dead or alive.
- There is still the blood flow issues of doing a Double Lung transplant on top of a already transplanted heart. 
- There is still the join issues in the lungs whereby they may just collapse.
- The sack around my lungs is stuck to my lungs in reaction to the Aspergillus which is a good thing as of right now as that's what is keeping an aspergillus from getting into me but if they were to transplant they wouldn't be able to take out the lungs without peeling it off and there's a 99% guarantee it would release something into my chest cavity. 
- Ultimately they came to the conclusion that if I had a second transplant I would with great certainty die. 

All my doctors, surgeons and co-ordnators know me very well and they know the kind of risks I'm willing to take and I'm willing to take some risks let me tell you. I was willing to have the transplant before the whole Aspergillus thing occurred and even then it was a risky thing, I was still willing to do it when the fungi appeared but when they basically say to you "You will die Stacie." it would basically have been suicide. It was by no means a majority decision I had people fighting my corner and who still thought I could do it but at the end of the day a lot of people are influenced by their familiarity of me, they don't want me to die as much as I don't want to and by taking transplant away from me that takes away the potential for me to live a long life. So looking at my case without knowing me at all everyone would say no, they phoned hospitals all over the country and asked fellow consultants and surgeons who all basically said they would not touch me with a barge poll. Using a set of perfectly good lungs on me would be a waste they do need to go to some-one who can give them a chance and unfortunately I just cannot do that. It's sad but that is just the way that it is and I knew that it could go that way. 

I think people thought that if this was the way that it was going to go that meant 'this is it, Stacie's going to die' and it does mean I will die but it does not mean I'm going to die NOW. I'm now essentially living with a chronic illness a bit like when I had PH but different. I am stable for now, although I wish we had stabilised me at a better point so I had a little bit of wiggle room the point is I am stable, which means I just have to adapt my life to my new way of living. I feel like the past 9 months has been me waiting for confirmation of how I'm going to live the rest of my life and now I have that confirmation. I haven't asked for any life spans or anything because I just do not need that I don't need a number applied to my life and ultimately they can't give me one anyway it would just be an educated guess that would then rule my life. I know if they said to me "If you can stay stable maybe you'll get a year or 2" I would then hit 2 years and just expect to die and probably start declining and I don't need that. 

So this week I have a fair few things to do and get hold of people to see what we can get in my life to make things easier so stair lift potentially, shower options, potentially care options all that type of thing. I guess the idea now is just for me to get out there and live, my life isn't over it still has so much potential and I didn't name my blog frivolously there is a reason because I genuinely believe Life is worth the fight and it still continues to be I'm still fighting for my life, I won't let myself just fizzle out and die. 

I will have bad days and there may be more of them but I know I have wonderful people in my life who make them better and make my good days just the most wonderful days. This was never going to be a death sentence for me because I have been chronically ill my entire life transplant just gave me a year off from that and you know what? I am thankful for every second of that year, it may have been like dangling a carrot in front of me but at least I got the experience and I get to appreciate and remember it. 

I'm not sure how well this all flows guys but I hope it helps and answers some questions you've been having. 

As always, thank-you for reading and chat soon
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10.4.17

Happy Days...

Disclaimer:- I do plan on writing a blog about the whole health situation and the result that I got in the end, I promise, but firstly it has been a lot to process and I also have an appointment on Wednesday where we plan on having a massive talk, to talk through what happens now and what I do going forward so I promise there will be an explantation as to all the goings on with me health wise and all that jazzy stuff just when I actually have ALL the information too. 

Firstly though let's tell what I've been getting up to, to keep myself occupied and busy and I'm so sorry it's been so long since my last blogpost but I haven't been stagnant or just lying on my death bed I have actually been doing things. After York I really didn't get much better my ribs have taken an absolute age to heal and the problem is I have to keep coughing otherwise I don't get any gunk up and then I get worse so it's a bit of a fight to keep the balance right so for a good month they were in pain and have only just started to feel a little better this week but that did not stop me from enjoying myself. Mark and I threw a March Christmas (!) for us and 6 of our friends. The idea was that I love Christmas especially the prep bit for it and ultimately no matter what Papworth's answer was going to be, whether a yes or a no, we definitely know I'm not getting 60-70 years worth of Christmases into my life so why not hold a Christmas and get to spend it with people who you don't normally get to spend it with?! So we asked our guests to just bring a £1 gift each and that was it, and themselves obviously, and we would do the rest. I was basically chief present organiser LOL, I was told by Mark to just do £1 gifts but I couldn't I gave myself a £5 limit and brought 8 gifts all kind of unisex gifts that anyone might want. Mark added what I would call "duff" gifts like a bottle of non alcoholic beer, unwanted shower gels, you get the gist... anyway so the game was basically a pick and steal kind of game and it was really fun and I think people enjoyed themselves even if the presents weren't exactly premium gifts I think that's what made it a little more fun! I also provided a kind of Christmas party box for everyone that had a few bits in that are classic Christmas;- so socks, chocolate coins  and such and then they could also fill the box up as the afternoon went on. I also put together a "table present" which is a family tradition in my house, after dinner we always get a little present which either has Jewellery, perfume or scratch cards in, so I did my own cheaper version of that. I put glowy, ravey rings and bracelets in there a tester perfume and a £1 scratch card. I think the little boxes were a hit. 

The day as a whole was so lovely! I know it seems silly but it's little things like that, that make me happy, it doesn't have to be some expensive holiday or fancy meal somewhere just a bunch of friends together having lunch was lovely. It wouldn't even have to be Christmas we just wanted to have a Christmas and that didn't even cost very much to do at all. I mean obviously it's not something you're going to be doing everyday but if you can I think it's so totally worth it! 

After Christmas I probably did overdo it a bit so I have had to do a fair bit of resting but it's all good really, I've been really getting into my colouring and I know it seems completely sad and lame for me to be excited about colouring but really guys it is just so relaxing. I haven't been having a bad time with my anxiety but sometimes it lingers there in the background, people who suffer with it will know what I mean, but when I colour it's a focus on something else and takes my mind off of it. I really want to get back into reading but since transplant my concentration levels when reading are just not there at all, I think it's the prednisilone, so I may have to work my up with that one. 


The next big activity was HARRY POTTER STUDIOS!!! Now long time devoted readers will know how much I LOVE Harry Potter the franchise and how ingrained into my life it is and will also know I have actually been 4 times previously. It has however been a few years since I've been and they've added a few new bits to it since the last time I was there and I've been wanting to go see them especially as they had literally just opened the forbidden forest exhibition bit and I was desperate to see the train as well. This time my lovely bestie Bernice and her Husband Scott came along and just omg we had so much fun. I didn't get on a broom this time but then I already have a tonne of photos of me on a broom so there's no need for any more really and Bernice wanted a train picture instead buuuutttt we did manage to persuade the boys who have never been on brooms to go on them and I can honestly say it was the funniest thing I have witnessed in my life. For two men who were adamant they weren't getting on them, they got pretty into it! We were proud of them! 

Right so the reason it's quite a big thing for Mark to have gone to this with me is because he's NEVER read a book of Harry Potter and had never seen one movie either until I forced him to a few days before to watch the first one. Don't worry though guys I think he enjoyed it as much as someone who hasn't grown up with a franchise can I guess, there's a lot that he's able to appreciate in how it's made and all that type of stuff so it wasn't completely wasted on him and I am making him watch all the movies, it just may take some time, we will get there though!!! 


So those were a few of the things I've been getting up to for the past few weeks, we did actually attend a ball as well which was just lovely even though finding dresses has become very hard work because I can't try anything on, so annoying!!! We've been having fun though Marks VW camper van is out of hibernation and he managed to get her going which has been lovely because it has meant we've, managed to get out to the coast and we'll be able to do that more as the weather gets nicer as well. 

Obviously this blog is a little bit vaguer than I ideally would like but I don't want to go posting a blogpost with half the information if that makes sense so I'm sharing the nice stuff and then once I have all the details with absolutely everything like plans, moving forward, treatment, travelling all that type of stuff I can give a much clearer view of everything so you can understand it better yourselves because I know when I shared the information last Thursday a lot of people were quite shocked and probably weren't quite sure how it had gotten to that point. So if I can give as much information as I am able to give then you guys can process it in a much better way. So I promise to blog Wednesdays appointment and I'm going to warn you now it's not likely to be pleasant and very blunt so positivity may be lacking in it as it will be very much just "this is the situation, this is what's happening" 


As always, thank-you for reading and chat soon
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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. 
    
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1.2.17

Getting away...


During my first wait for my Transplant we figured something out, what was it? Well we figured out that I couldn't just be waiting for this "thing" that possibly may never happen. It's simple and maybe not quite the revelation it really is but I think anyone in the position of waiting for a organ will tell you how hard it is to just carry on sometimes and the idea of planning things and doing things is very hard in that position especially when something that you've planned potentially gets cancelled last minute and soul destroying that can be. This is what we did though we planned things, we went places, brought tickets for things even if they were months away because it gave me something to look forward to and kept me excited for life. 


This time is a little more difficult a lot of things that we've had planned in the past 6 months got cancelled lots of money lost but we are working our way round it and it's not stopping us. Things are having to be planned very close to the event so when we know I'm okay and there's not enough time for me to get ill and we know it's unlikely that Papworth will keep me in. Also whilst I am off the list waiting for this scan it's a good time to get out and about because we have no time restraints with regards to distance or anything like that, so we just do a lot of preplanning and then everything runs as smoothly as possible and is as stress free as we can get it. 

Mark and I were very kindly offered by the lovely General Manager (Sandeep Bhalla) of "The Berkeley" Hotel in London, two complimentary nights stay at their hotel. Now I was just the most excited I could possibly ever be about a hotel, even I know how lovely The Berkeley is! We were all booked in to stay from the 29th to the 31st, I had a clinic appointment on the 26th and I was praying to any god who was listening that Papworth wouldn't keep me in and thankfully they didn't!! We were all set for our little London getaway. Now we weren't going to London to just stay in a hotel although I certainly could have just spent all my time in there. We were actually going to go see the "Cirque du Soliel" and the Natural History Museum which I have been dying to see for so long. 


Now travelling as a disabled person is hard, firstly the fact I'm referring to myself as a disabled person is difficult for me but I have had to resign myself to the fact that that is really what I am now but that's okay that's personal growth, I can't really carry more than a small handbag nowadays so who ever I'm travelling with has to do the heavy lifting and they aren't always too keen to pile it on top of me. So we took; 2 kind if duffle sized bags like weekend sized bags, a oxygen tank, my handbag and then obviously the wheelchair, might not sound like a lot but Mark had to carry all that and then push me as well! We got ourselves organised though and Mark had planned the travel down to a T, getting to London was going to be a bit more difficult that coming back because we were travelling on a Sunday and they were doing works on the lines so getting there involved a taxis, a train, a bus, a set of stairs to get down, a train, a escalator, and then another taxis. We did it though and it wasn't stressful at all because we knew what were expecting. We ordered a Uber from the station to our hotel and we got the loveliest Somalian man drive us he'd previously been in banking or something and decided he just didn't want to be chasing money and that wasn't going to make him happy, he just had the best attitude towards life and just had such a positive glow about him it made me really happy. 

Once at the hotel I was in awe! It was beautiful the staff were so lovely! I know that staff are paid to be lovely but that doesn't always mean they are good at it but they were all just so amazing and kind to us because we clearly weren't their normal rich clientele, they just made us feel so welcome! We were given a lovely room with the biggest and most comfortable bed I have ever slept on in my life, I'm now on a mission to find their pillows! lol. By that time I had just enough time to do my nebuliser and physio (because that party never stops lol!) before we had to head to the Royal Albert Hall. 

The Royal Albert Hall was lovely and surprisingly quite wheelchair friendly which I wasn't expecting because of how old the building is. The show was beyond anything I had expected, what those people can do with just their bodies is incredible! I personally was particularly impressed with the girls who did the rope stuff but that doesn't take away from what all the others did because they were all amazing. I would certainly go and see another if I got the chance to. 


Monday saw me devour the most amazing American pancakes ever for breakfast!!! I don't know if it was because we were in a hotel and how posh it was but I mean seriously those pancakes were incredible! The staff at breakfast though were just so attentive, no sooner had I finished my tea there would be someone filling it up to make sure I wasn't out of any, everyone always so eager to make sure everything is okay. Although I'm not used to that kind of thing it was lovely! Now this day was a very, very long one. We went to the Natural history museum which I have been saying for years I've wanted to go to and I'm really pleased we went I just wish there hadn't been so many children around but I suppose if we had gone later in the day that probably would have been the case. I really enjoyed  it though a lot of it was really interesting. We spur of the moment though decided to go the The V&A museum which is pretty much next door and I actually enjoyed this one more than I did the natural history museum which surprised me but I just had more fun learning about stuff in there. Especially the fashion section, seeing it grow through the times and change and evolve and come back again, really really good. 


Then we went shopping!!!! We went to Harrods and did a bit of a mooch around, I brought a Charlotte Tilbury eye pencil which I have fallen in love with! We brought my mum a present and we also brought me a underwear set. I haven't brought a "set" for a very long time, I haven't been wearing bras at all and it has quite genuinely upset me not being able to wear a nice underwear set, I've always liked to. The one we found though is so perfect and doesn't feel constricting on my chest because instead if a underwire its just a thick soft elastic band that is giving and I love it! 

Tuesday was our last day but our train wasn't till 4 and checkout wasn't till 12 so we had a little time. I said my sad farewell to the bed which I shall miss with all my achey muscles and we decided to do a bit of a touristy few hours. We visited the Queen, Downing Street, Parliament and Big Ben, the London eye all that lovely stuff and then got on the tube back. Now on the way back we thought we were going to end up on a particular side of a station which would have had a escalator we could get on but oh no, not us, we ended up on the side with several flights of stairs lol. we decided the only way to go was to just take the stairs bit by bit and then we'd get up them eventually but then out of no where these 4 absolutely lovely Eastern European lads offered to carry me up and before I knew it I was in the air being carried up the stairs like some princess on a flying carpet! It was so fun!

The rest of the trip went really smoothly we ended up in first class on the way home with the loveliest trolley lady who gave us stuff for free and quite simply I couldn't have had a better trip if we had tried. 


I honestly don't know what to say about the kindness of Mr Sandeep Bhalla by allowing us to stay in his hotel he made our trip even more amazing, if I had ended up having a sick day whilst we had been there I just know I would have been fine in their hotel, it wasn't just a bed to stay in for a few nights, it was a lovely place to stay and enjoy and relax in and had I needed anything they would have been more than happy to help. That in itself took away so many of my stresses about travelling and being a way. They even gave us a gift! I felt so spoilt and just wow the whole 2 days. If I ever can I will certainly go back there!

Now not all trips are going to be like this one or quite as lavish but now is the time for me to be doing things whilst I can and I can still enjoy it, planning things that may not happen but still keep me excited for life because nothing is so important that it can't be re-planned.
As always, thank-you for reading and chat soon
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25.1.17

Those who care...


So in my lifetime experience of being ill, it's not the ill part that's the hard part or at least not for me. I can do the whole being ill thing, I believe that's what I was put here to do with my life, it sounds odd but I genuinely believe I was given my lot in life because I could do this I could persevere through this when someone else might have decided to give up when they were told they would die at various points in their lives. I never have, I've never believed it when I've been told I've got such and such time date stamped on my forehead and after being told at least 3 times in your life you've only got a few years left you just don't quite believe it because I know me and I know what I can do. Give me a situation and I will prove you wrong I might not get through it with a smile plastered across my face but I will do it because I do not bow down in the face of death! I do not idly sit by if told there's nothing more because there is always something and I will always fight for my life! 

So now we've established that what I actually find the hard part is that although I can be ill I can't do it all by myself. My 3 year wait taught me a lot, I remember feeling like it was a task I had to do by myself it was job I should not burden people with it because why should they have to deal with this awful situation as well? So I really did try I always had my parents and my sisters but they were already a part of it they couldn't be "un a part" of it, they were already invested! But I could control that immediate circle, no boyfriends because that was a mess I didn't want to deal with and only a few close friends because that's as much as I could handle and my close friends were people already invested or people who completely understood the situation so weren't going to be blindsided by it if I did die. 

This time I'm much worse and I have absolutely no choice in having help, I can be as stubborn as mule but even I know I don't have a choice this time. I consider myself so lucky because my mum and dad are still here still willing to do everything they possibly can for me. I so desperately wanted my parents to have a break from me and everything that comes with me. It was a big adjustment initially post transplant because i had gotten to a point where I felt like I needed to be independent and give them time where they didn't have to be at hospital with me and that was hard for them because they were so used to coming to most things with me. But we were getting there and I was becoming a normal 25 year old. Then BAM I'm ill again. I have felt so guilty because I so wanted them to be able to not have to worry about me so much and now it's just all tits up again. I have them at my appointments because I need the support and I've always been a great believer in having more people in the consultant room because more ears is good especially in these situations when things start getting complicated, you know at least one person is bound to absorb something. I'm so incredibly lucky because my mum is one of my best friends, we gossip like old ladies we enjoy shitty Christmas movies even in summer, I'm not at all embarrassed to have my mum wash my hair and help me out of the bath or help me get changed or anything. I just feel awful that she is having to do it and I know I will probably never be able to repay her for it, she will always say "she's my mum it's what she's here for" my mum's priority in her life is her children and always has been there has never been any doubt about that, she may have a job to earn money but her JOB is to look after us and she is simply amazing at it!!! She and my dad are the reason I'm still here, my mum refused to believe one moronic doctor and thank god she did because if she hadn't I would have died. 

My dad obviously doesn't help so much with the changing and stuff but he does so much that contributes to helping me. He works insanely long hours so that I can live here without the worries of paying rent or anything, my dad went to all my appointments and operations as a child whilst mum had to look after Candice and Megan and honestly some of those hospital stays are some of my most treasured memories! My dad is one of those people who would drop everything if he can if I needed him. He would tell whoever was trying to stop him to fuck off and just leave. He continues to come to my appointments even with as little as a few hours notice and I'm not sure what me and mum would do without him. 

Since my transplant I have attained a unexpected someone. My boyfriend. Now I won't go in to details on here about him because I don't like that but he has become so important to me and my life and I always thought I couldn't be ill and have a boyfriend because I just feel so guilty about putting this incredibly hard thing on someone else. I thought I had time I never thought this would happen this soon so Mark has now be Shanghaied into this situation and I understand that he "gets" it more than the average person but I just feel this weight of guilt that I've put all of my problems on someone else who should not have to go through all of this.  I love him though and that overcomes all of that and he is quite simply amazing! He is my favourite person in all of the world and makes me happy just by being in my life. He has been looking after me so incredibly and just wants to make everything we do fun even if it's only a lunch or a walk somewhere (or push now) he does absolutely everything he can do to make my life happy and fulfilling. I consider myself just the luckiest person ever. 

The thing though I can't repay them. I can't repay my parents for their lifetime of care, I can't repay Mark for bringing such a spark to my life and being so caring and amazing. That's the problem how do you say thank you to people that you love more than anything? Who you care for more than anything? and who care for you too. I can't and that upsets me because they deserve so much more than I give them. 

As always, thank-you for reading and chat soon
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22.1.17

Turbulant times...

 
This has taken days to write, not because it's hard to write... well maybe it is, I don't know but it's just like the words won't come or my brain just can't be bothered to go over it again but hey ho hopefully I can get through it all at least and we'll see how we go.

So last we left off I had just had a clinic appointment and we had lots of plans for the Friday and would leave Hospital on that Saturday. That did not go to plan.

At the clinic on the Wednesday they had discovered a shadow on my x-ray that they just weren't sure what it was it could have been a rib or it could have been a cavity or it could have been nothing. On the Thursday they had gotten previous x-rays together and seen the gradual build up of this shadow which ultimately determined that it was a cavity and my Dr was sure with all the other evidence it was a cavity full of an infection called Aspergillis. Now essentially the infection itself isn't a problem if it had just been that we would have been fine, what the problem is, is where the cavity is located in my lung, that is the problem. It's located just under my collar bone near my throat, so essentially very close to the surface and apparently somewhere that is routinely torn during surgery. The consultants are reaching the point where they think it's one risk too many.

So after that little bombshell I was told that I had to be suspended on the list whilst we attempt to get rid of this cavity. We've started me on some antifungals and some antibiotic nebulisers and I'm now officially up to 21 different meds a day LOL. In a way it's great that they found this cavity before I got my transplant because it would have been awful to have gotten a call and then be put under and for it to be discovered in that situation. The problem we now have is that some surgeons potential may not like the idea of doing the surgery at all because the Doctors tell me that Aspergillis doesn't ever just go it leaves like an "imprint" and the way me and Sarah imagined that was like a mouldy bathroom ceiling the mould is gone but you can still see it. So that is making a few people just a bit iffy about the whole situation.

So whilst I was in hospital and we were trying to sort out a bunch of my blood levels and just adjust to my new medications they had they transplant meeting which they always have on a Wednesday and discussed me and my situation. Ultimately the result came back that the surgeons said they were confident that they could perform and do the operation, which is super reassuring and great news, however a few consultants are kind of on the fence, they're worried transplant might just be a bad move and think I could potentially get more out of life if I can stay stable and therefore would prefer not to do the transplant whether I can get rid of the Aspergillus or not. This is all fine I need as many opinions as I can get both the positive and the negative. Personally I still want the transplant, I trust the surgeons at Papworth so I believe if they say they can do it, they can! If they had said a outright no I would have fought back but luckily they all agreed to wait and see if I can decrease the size of it or get rid of it completely. So in 5 weeks now I will have another CT to see whether it's going away or decreasing.

Ultimately I believe this should be my decision as they've already agreed to doing a operation with unquantifiable risks this infection doesn't make it any more unquantifiable. It's not going from 90% chance you live to 40% it's literally "we don't know if you'll die" "we don't know if you'll die even more." I'm lucky I still have decisions though even if they are crap decisions but ultimately the way I'd prefer to die anyway would be during an operation where I'm completely unaware not slowly and painful fully aware of what's going on and being unable to do anything about it.

I'm home now thankfully and only had to stay at Papworth for a week but I now have a long regime or nebulisers and physio that I have to do now because I really have to shift this stuff in my chest but I think it's going now so I'm excited to get on and doing stuff, I refuse to let this little setback stop me from doing things. I just have to really pay attention to myself and look after myself. I'm determined that I will survive and luckily I've not been proved wrong yet :)

As always, thank-you for reading and chat soon
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11.1.17

Cold Turkey...


So the past few weeks have been HARD, just really difficult. I was on my IV's until Friday and they just make me feel crappy, in all honesty I was a bit fed up doing them this time and just didn't have the patience to be mixing up, drawing and administering antibiotics three times a day. I got through the two weeks though thankfully unfortunately I just started to feel really off and weird and super anxious like all the time. I didn't feel like myself at all. I started to get anxious about doing anything:- moving, getting changed, brushing my teeth, being by myself, going for the loo... so on and so forth. I was talking about a few weeks ahead of time and I just started to panic for no reason. Then it would reach bedtime and going to sleep and on the either Saturday or Sunday I had a crying fit and we thought maybe it had something to do with me coming off of the high doses Codeine I had been taking while I had been having some pleurisy. Monday evening however I was just hysterical, I wasn't me at all I was crying and just saying "I can't do this anymore" "I can't be this person" "I just want to be able to switch my brain of" "Why won't this go away?!" You know everything you can think of I was probably saying and it just wasn't me I'm not like that at all so we knew it had to be something more. Ironically the day before I had said something about taking my anti-anxiety medication. I decided to check my pre-made up drugs for the week and tah dar there you'll have it there were non of my anti anxiety meds there which ultimately meant I hadn't been taking them since last Wednesday. I looked up the side affects of coming off of the drug 'cold turkey' and what they said was the patient would likely be in a state of "Mental disarray and Chaos" and too bloody right! That is the most accurate description of a side affect I have ever read absolute mental disarray is what I have been experiencing for the past few days. I have been a utter crazy person. I'm just so pleased we figured out why I was feeling the way I was because there is no way I could have carried on the way I was because it was just so incredibly awful. My advice is to NEVER go cold turkey off of a antidepressant/anti-anxiety medication it will send you insane lol!    
 
I feel so awful for anyone who's had to be around me, at least in the last week, I've been so unlike myself. Saying all that though I had a lovely second Christmas with my Boyfriend which we celebrated on New Years Eve, the past few weeks have been quite quiet though because my IV's have restricted when I can go out and then me feeling just generally awful has meant going out hasn't been much of a option.
 
I had a clinic appointment today though which I had no expectations for the appointment luckily everything is nice and stable lung function is sitting at 24%. There is some worry about my pseudomonas and that is keeps coming back so that's what we're currently trying to sort of tackle that so I have to go back Friday where they are going to start me on a antibiotic nebuliser which hopefully will start to keep it at bay. Recently I've been finding it harder to shift the gunk that's in my lungs so we're going to do some intense physio when I'm there so we can try and shift some of it. I've also been having problems with sleeping at the moment, like basically I may as well not be sleeping as I'm not really resting whilst I'm asleep my body is working so hard all the time, so we're going to do a sleep study as well to really get a good look at what's going on whilst I'm asleep to see if it's oxygen related, fluid related, secretions all that type of thing.
 
Everything seems to be still positive which is great and I'm finally starting to feel like myself again after the accidental missed medication lol
 
As always, thank-you for reading and chat soon
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