Tag Archives: East Coast

Planes, Trains and Automobiles

Sometime ago, I got the number 30 bus from Hackney Town Hall to the stop nearest to my flat, and as I stepped onto the curb on the road they call Ball, I remember how elated I felt, because finally, after months of Mamma Jones driving me places, taxis and the Patient Transport Service, I had regained some of the independence I lost with myeloma. Many months have passed, over a year’s worth in fact, since that happy time, and I can now without any hesitation that I no longer feel that way when indecently travel. The novelty has well and truly warn off. The adrenaline I felt that day has long been superseded by apprehension. Apprehensive and loathing to be precise.

Now, with the PTS a distant memory, any travel I undertake no longer feels a matter of routine as it should. Travel is an effort. It is an effort for a number of reasons, not least because I have become a lazy bum who loathes strangers, particularly the sort of stranger who does not know what a ‘Priority Seat’ means. It is a bummer, especially now I am getting out and about and attempting to enjoy #londonlife.

I fear the unknown with travel. I fear what will happen if I get tired whilst I am doing it, I fear people bashing me and not letting me sit down, I fear that I cannot always be independent when I am doing it, I fear that my face will not be able to disguise how uncomfortable some seats are for me, I fear falling over and I fear what will happen if my mode of public transport breaking down. These fears go through my head every time I travel and thus it is the reason why my current, preferred and used mode of transport is a black cab. Trust me, taxis are an expensive way to travel, but it saves my precious energy from worrying about being forced into delivering my much mentally rehearsed, vitriolic speech to people who fail to surrender the priority seat when it is needed. The speech by the way is awesome, designed to make the recipient go home and flush their head down their toilet with their mouth open. Sometimes, I admit, it can go too far and include a certain word that is not ladylike and I am working on that. Ignorant norfolkers.

I have had the time to dwell over my ability to travel and I have come up with certain rules to reduce my fear and manage my hatred of humankind and they are as follows:

🚌 Do not travel during rush hour
🚌 Do not leave the flat without my stick
🚌 Do not get on a bus with any form of luggage
🚌 Never go to the top deck of a bus, because you cannot, and on the rare occasions you have done it, you have paid for it instantly and then well into the following day
🚌 Never stand when a vehicle is in motion
🚌 Prior to travel, if concentration is proving impossible and the bagS below the eye have turned a deeper shade of purple, throw money at the problem
🚌 Avoid the aisle seat, as turning corners can really be treacherous when you are sitting next to somebody equally as large as you are
🚌 Always be polite to those under the employment of the travel company, always, and if this includes saying ‘hello’ and ‘thank you’ to the bus driver then so be it, it could lead to a free upgrade
🚌 If disaster strikes, ring somebody and talk incredibly loudly about the fact you have myeloma which is a cancer with no cure

Some of these rules are easier to follow than others, and it is on the bus where I find myself becoming a rebel. Not a rebel as such, because in no way, is it enjoyable.

In my mind, buses are the most dangerous and troublesome form of transport and nothing TFL can tell me will convince me otherwise. Buses are dangerous for many reasons, they were dangerous before I knew they were dangerous. If I knew what I know now, in early August 2012, I would never have stood up on a bus as it was breaking and thus I would not have ended up clutching a lamppost on Shaftesbury Avenue crying and too shy to ask the policeman walking past me to call an ambulance. Now, being the know it all I have become, I resist the temptation to stand up whilst a bus is in motion as noted above. Bus drivers, unfortunately, are not privy to my rules, and they frequently drive their big red vehicles before I am safely in my seat. I find this most inconsiderate. At least I have now worked up the courage to tell the person next to me that I will not stand up to let them out until the bus has come to a complete stop; it is always met with confusion. I do not get on with luggage at all because I am not agile and any lifting has to be saved for the train, in the event that I can find nobody to assist me or if the train is busy. That is also a consideration I have and one I faces and flailed today.

My main issue however is with the public. On the buses (and they could be getting a bad reputation because I use them the most), on the train and on the tube… My impression, which of course is skewed, is that people ignore those with a disability, unless you have a visibility disability or a blue rinse. I was once asked to get out of my non-priority seat by a man in front of me in a priority seat to allow an older lady sans stick to sit. I said no. On another occasion, I walked into a bus outside UCLH with a bald head and a large bag saying pharmacy, and asked for a seat and nobody got up. I asked again and nobody got up. More generally I am encountered by competing eyes looking at other like minded seated people, wishing that they win in the competition of whose manners kick in last. It is a headache and one that I fret over again and again. Two years ago, I wager I was one of them. Actually, I was not because I was a top deck sort of gal.

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Sod that, give me a badge

I said once that my life is full of new challenges now, and this my friends is one of the greatest practical ones I have facing me, and it is one that I should face everyday but sometimes, the worry and effort get the the better of me. Home is safe. Taxis are comfortable.

There is one mode of transport of which I would not complain about (apart from pain from sitting and sitting leg room) and for that, I wait with breath that is baited. Seriously though, can somebody please just put me on a plane.

✈️

EJB x

P.S. Some may call this attention seeking. I call it preservation.

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The 07:35 to Leeds

There are some things from my former life that I identify so acutely with my former life that their weight and meaning now is infinite. These things represent my independence and freedom from a time before My Myeloma, and thus they are a symbol for something that I have, in the worst case scenario, lost, best case, miss.

One such symbol, is the 07:35 train to Leeds, calling at Wakefield Westgate from Kings Cross. I know this train. I dread to think how many times I have caught that train, taking my ability to do so for granted. I dread to think about the number of times, I rocked up at Kings Cross Station, tired and make up free, purchased an overpriced breakfast and then raced across the concourse in competition with the other commuters, to the train, spilling my tea, because I did not like my seat reservation. For your information, I like a forward facing window seat in coach H. It doesn’t matter that that carriage doesn’t have power sockets, because I’m travelling in the morning and all my electrical goods are fully charged. On the train, I was a creature of habit. Preferably, I would obtain a seat on the lefthand side of the train, for no other reason than liking it. I would whip out my travel pillow and get comfortable. First though, I would eat my breakfast and have a cup of tea whilst listening to a pop anthem to get me in the mood. Somewhere around Peterborough, I would fall asleep, by which time I would have given up trying to be cool and I would be listening to The Phantom of the Opera Soundtrack. If I happened to still be awake at Peterborough, I would force myself to stay awake until the Tallington level crossing, to remind myself that I was a grown up and no longer the teenager who used to work at Tallington Lakes. I like to romanticise things with meaning; can you tell? At Doncaster, where one is greeted by a series of metal carriages, Work Mum would call me to make sure I was awake. Waking up at Doncaster gave me sufficient time to do my make up before reaching my final destination of Wakefield. I wouldn’t need the announcement at Wakefield, I knew when to stand up and I would know where I would alight, making allowances for carriage differentials. I would then allow nature to happen when I was on firm ground, before making my way to the exit and hailing a cab.

It is a ritual and it was mine, well, until it wasn’t.

I miss everything I connect to that train. I miss being able to get up early, even though I have always been really bad at it. I miss working. I miss feeling like I am doing something.
I miss Hofman’s Butchers in Wakefield, especially their pork pie. I miss a life where my biggest responsibility and worry is making an early morning train.

It does amaze me how I can get gooey eye over a train, but that’s just me I guess.

My point this morning, is that sometimes it is possible for me to breakdown these barriers. It’s also necessary. It is possible, with much planning and thought, for me to confront my pre myeloma symbols, which I have managed to turn into hurdles. It’s also necessary. It is possible for me to show My Myeloma that it does not rule me. That is most definitely necessary.

So, as I type this, I am sticking two firm fingers up at My Myeloma, whilst sitting on the 07:35hrs train to Leeds with my travel pillow and iPod and I am crying.

I am crying because I could do it and for so long, I thought I couldn’t. It wasn’t lost, it was just missing. Just think, for how many other things does this apply?

EJB x

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Choo Choo

This evening, I got public transport for the first time since the 14 August. I am not able or brave enough to explore what TFL has to offer, but it would appear that I am able and brave enough to experience the East Coast Mainline and tackle Kings Cross Station.

It was much easier than I thought, but that is probably because the train was not busy, as I had planned. As TOP would say, always remember the Seven Ps (Prior Planning and Preparation Prevents Piss Poor Performance – we are dead cool in my office) and I did. Pre My Myeloma, I would venture on this train line on average, once a week. Normally to go to Wakefield. Ah, Wakefield, how I miss thee. The difference this time is that I had to use a suitcase with wheels instead of my stylish overnight bag, I sat in the Priority Seat and I did not dare to get up and go to the toilet for the fear of pain up the spine whilst the train was in motion. I also failed to ask somebody to lift my suitcase on and off the train, I’ll learn. Fortunately, there was a nice lad in my flat who carried my suitcase from the front door to my room on my return.

The journey, as with most things at the moment, was bittersweet. I am half happy because I was able to get the train from Peterborough to London, manage both train stations and then get back to the flat easily. I am half happy because I know I have jumped another hurdle and it is going to save my family a lot of time and petrol money as we go forward. I am half sad because it reminded me how I used to get the train with the greatest of ease and now I can’t. I am half sad because it reminded me of my life before My Myeloma and how much I miss it.

Oh well, such is life. For some reason, this past week, I am having to remind myself that the glass is half full.

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