Today was an exciting day, for two reasons. First reason is, I went on a train. Again, sounding rather mundane there, but I haven’t been on a train in over 3 years. As my CF progressed and I got more and more breathless, climbing stairs and changing platforms became too exhausting, and once I was on oxygen it became nigh on impossible. But today, I took that next step towards being a bit more adult and restating my independence and got myself to Victoria (I didn’t want to go on the underground, worried about infection risks). I arrived in plenty of time (fear of being late) and wandered over to the ticket booth. As I was buying my ticket, I was thinking “I have two new lungs inside me and you don’t even know” which was highly self involved – I mean the man who was serving me could have had any number of things happen in his life that passengers wouldn’t be aware of…we never know what journey the person next to us might have had.
Taking my seat next to the window, I tried hard not to stare at other people, yet was fascinated, taking in all the little human details. I don’t think you very often get that close to strangers and become that close a witness to their little idiosyncrasies. An old couple, sitting side by side, bickering gently on which line they need to take. A harassed looking mother with two young children, who were taking it in turns to repeatedly ask where they were going and clearly not believing the mothers tired repetitive response. A young trendy girl, earrings and bracelets jangling, playing a game on her phone, a business man, chatting on the phone with one eye browsing the paper on his lap.
On arrival at Victoria, I was slightly overwhelmed by the huge bustling rushing atmosphere. Clealry I have been moving slightly in slow motion still (not hard when you live in a little town) and everyone there seemed to be on fastforward. I was early so browsed Monsoon for a bit (such a bad idea, nearly spent my taxi money on new shoes that I really don’t need but managed to resist) and then wandered over to the taxi rank. Sitting in the Taxi, I was desperate to blurt out “I got on a train and came into London all by myself!” but thought that was a)rather childish and b)may make him think I was weird. The journey was much shorter than I anticipated and suddenly I was there, staring at the doormen in their long coats and top hats, feeling distinctly out of place.
I tried to look assertive and confident and went to the desk to ask where I could wait. They showed me into a seated area with huge armchairs that a duke or duchess would be proud to own. There was a towering vase behind me with the biggest bunch (it can’t really be called a bunch) of flowers cascading out of it; I considered taking a photo but decided against it as I would look a tad touristy.
The meeting itself was with the Simone Cowland Trust, who are holding a charity ball to raise money for Foulis ward (the CF ward I have been treated on for most of my adult life, and that I lived on for much of the last year or so prior to transplant.) Last year they had Martine McCutcheon host their ball…this year they have asked Emmie and I. We are totally overwhelmed and deeply honoured, and are hoping that we will do them proud and help them raise loads of money to support adults with CF who can end up spending so much time staring at those four walls.
I headed home after the meeting feeling sky high, motivated and determined. I am hosting a stall at a village fete this Saturday where we will hopefully get some people signed up to the ODR, and raise a bit of awareness about our campaign and CF along the way. We can’t mend all the problems in the world, but we can do our bit to change it…
It may or may not have been highlighted that I failed to say where I went today. It was the Dorchester. Minor detail clearly.
Update to say there is no update!
1 week ago