Its been another long time but I'm looking on the positive side that it just means I have lots of things to tell you about :)
A while back now I made a dream come true. I had a weeks work experience at a West end theatre, not just a West end theatre but at The Queen's which currently houses Les Miserables, and next to Phantom is my second favourite musical. I truly believe it was pure fate that gave me this opportunity, as it literally came to me out of the blue. I was terrified I would mess something up but I can honestly say it was one of the best experiences I have had. One of the managers told me before I started "it will either scare you off for life or convince you there's nothing else you want to do". I can honestly say I don't want to do anything else. I worked in box office, front of house, wigs, lighting, stage crew, and management and adored every minute. I literally cried on my last day. I was slightly worried there might be a lot of bitchiness or that I would be some what in the way, but I can honestly say everyone I met was so friendly, chatty, and went out of their way to make my week extra special. I met some truly wonderful people and felt truly blessed to be given this chance; to be alive and working on a show that helped me through some of the toughest times in my life. There were a lot of 'thank you donor' moments that week. I'm slightly sad that this isn't my life, doing what I love in a truly wonderful atmosphere but its spurred me on to ensure that one day it might be.
Me trying on wigs!
In other news I have finished my last two uni courses a couple of months ago. I must admit with the intense fatigue I'm still battling with it was a tough old slog! I had an exam and extremely poor memory (more of that later) I was panicking a lot. However my invigilator was lovely and encouraged me to take rests as needed which I did rather than pushing through which made all the difference. I was waiting on edge for the results knowing roughly when they would be available. They came early as we suspected they would and I had a hospital appointment on the day I thought they would be released. I had checked several times before we left with no joy. It was only when sitting in the basement of the hospital that I saw others had received their results, cue me frantically trying to get enough signal to check my result!Which is the main reason why when it said 'distinction' I thought I must have got the wrong page! But no I was correct. There was such a slim chance of me making the mark but I did and that means that I gained a First class honours degree in Literature! I'm going to repeat that. A FIRST CLASS HONOURS DEGREE!!!! I could have cried I was so happy. After years of the toughest journey imaginable while doing a degree I had made it with the best result possible. I was at the end of a journey I never thought I'd get the chance to finish. There were so many times in those 6 years when I thought I would die and never graduate, it used to break my heart but also pulled me on. I am the luckiest girl to be able to finish and fulfil my dream of walking unaided to receive my award. It will be another beautiful, wonderful day spent with my family that I wouldn't have seen without my incredible donor. I have been enjoying hiring the robes, buying my mortar board and booking my ceremony in London next month.
Following on from my last post I have still been having highs and lows. I've been lucky to be able to spend some time doing nice things both with friends and by myself. I've met lots of new people and am hoping to build some lovely new relationships after being restricted for so long. I've booked my first ever few days away by myself, me and a fellow transplantee Pippa are going to Disneyland Paris to celelbrate my 2nd transplant anniversary in October which will be very scary for me but exciting too. Its lovely to have finally started to live again. I'm still struggling a lot with fatigue, but am learning how to manage it slightly better. I'm working to build my muscles which my physio tells me will still be weak from my long wait. By building them up less energy is used to make them work so I have more energy to play with. I've also been getting help to maximise the energy I do have. I'm very lucky to have a wonderfully supportive family who help me where they can. Something as simple as having a lift to the station and back so I can save my energy for the actual journey, mum cooking me dinners or helping me with cleaning etc so I'm not expending energy unnecessarily all really helps.
I think many people see transplant as the 'fix all; option, but its really just a separate set of issues. Obviously I am incredibly grateful and majorly better off than I was but to imagine I'm now normal isn't true. I still tire easily, shake from the drugs, I often ache all over or have pain and still have gunk in my lungs every now and then to name a few. My memory has also been very badly effected by both the drugs and my ongoing virus, its actually getting quite bad now so will seek advice at my next clinic. I still worry constantly that if I get an infection or rejection things could go downhill very quickly.
With all these issues many of the transplant community struggle to cope with the new life they've been given. I have been struggling for some time now but not wanted to admit it. It's a wonderful chance to be given but with any big change comes a lot of emotions and this is about the biggest range of extremes you can go through; being ok, declining health, coming to terms with dying, having a chance at life, waiting for years, hitting rock bottom, knowing you will die, being saved, going through hell to recover then having a whole new way of life that you need to slot into while still having to deal with medical problems and that ever present threat of it all crumbling away. I'll write a separate blog about this side of things soon but anxiety is featuring pretty heavily in my life at the moment although I live for the moments when it lifts slightly and I can enjoy things however simple they appear to others. When you've had the most basic things taken away you truly realise it's the little things you miss most.
After uni finished I've had a bit of a panic about 'where the hell do I go from here?' the answer is I'm not sure. I've done well academically and am tempted to study further with literature, but is it where my passion lies? No. My true passion is theatre and I want to do an MA at drama school. It wont be easy and my main concern is the physicality of the one year course and its long hours. So at the moment it's a case of working on stamina, and gaining experience. In the meantime I'm starting some short drama courses soon, continuing my singing lessons which I love and seeking more work experience. I also have a campaign plan for organ donation in mind which I hope I can get off the ground soon. I have a need to give back after being so lucky to receive such a massive gift denied to many. I will definitely need help with this and will give you more details soon but safe to say I'm a little lost with where to start at the moment!
To keep me busy day to day I am starting a new business. I am loving cooking and food which is a huge turnaround since before transplant! My lovely mum has always made us a birthday cake each year and she's inspired me to follow in her footsteps by baking and cake decorating :) I really enjoy the work and especially the creativity involved. Please check out my new cake page on Facebook https://www.facebook.com/Scrumdiddlyumptiouscakesandtreats . Come over, browse the cakes and goodies and give us a like or comment please!
think that's enough news for now but will be back soon I promise, hopefully with some graduation pictures! Thanks for sticking by me on this crazy journey!
PS!!!!! An Edit! I've been very lucky to have fulfilled most of my original 'post transplant wish list. So I'm looking for new ideas. Please feel free to chip in with ideas however odd, crazy weird or inspiring. Places to go (London particularly as I'm obsessed with it) things to do etc Go to it people!!!