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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