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