Row hard, row fast

Monthly Archives: January 2013

I received the devastating news last week, that a dear friend of mine, had finally lost her battle with cancer.

It was a chance meeting that brought us together, we met in hospital, she was waiting to have major surgery, I was in because I’d dislodged another feeding tube. Doesn’t sound like the most obvious grounds for a friendship, but we were the only two young people in the bay, and happened to be in beds opposite each other.

I was immediately taken by her kindness and attitude to life. She was concerned about how she’d changed physically, but I had only known her as she was there at that time, and she looked beautiful to me. There was a spark to her when we met, that is impossible to explain, but made me want to stay in contact with her.

I remember passing her downstairs in the concourse one day, I think I’d been discharged at that point, and I went over to say hi, to which I got told to pick some numbers for the Euro millions (don’t think we won sadly!!) and she scribbled her number on the back of a lottery slip.

Knowing how overwhelming hospital can be in any circumstances, I made sure I text her regularly. I hope she found these messages beneficial. I think she found me to be someone to rant to when hospital politics were causing problems, or treatments weren’t going to plan. I know from another friend of hers that she was grateful that I stayed in touch when many of her old friends didn’t.

She quickly and easily fitted into my life, and it has always felt like I have known her for much longer than I actually have.

I remember her telling me excitedly about Fynn, he sounded just like her match. The same ethos and attitude. When I first met him, I could see why Vicky was so in love, and as cliched as it may be, I knew he was the perfect man for her. She had been concerned that she’d never find anyone because of her situation, so I was absolutely delighted when she announced they were to marry.

Her wedding was such a special day, although I know it was eventful in preparation. I got a text one day announcing that she couldn’t find any shoes so was going barefoot, which just seemed so Vicky, it always makes me smile. This eventually led to Fynn and his best man going barefoot, which seemed to confuse a lot of the guests, and had others in tears before it had even started!!
Watching her beam with happiness as she exited the church, is an image that will always stay with me. Another special memory is at the reception, when ‘Stand by me’ came on and everyone surrounded the happy couple and blasted the song out.

Vicky has always been there for me. From finding people for me to contact to try and keep me out of a nursing home (that’s a story for another day), to sending me postcards she had drawn with messages on whilst we were both in hospital, but at opposite ends of a huge building. It confused the nursing staff greatly when they were delivering internal post to me at 6 am, and random members of staff being asked to deliver them to me. I don’t think she knows how much they brightened my day and helped distract me.

Vicky will leave a hole in many peoples hearts and minds, even those who didn’t know her directly, but had followed her blogpoppies and epiphanies or had come across her story in the media. She wanted to make sure before she passed that the business she and Fynn ran, was in a strong position and she could leave a legacy. She has certainly done that. Please take a minute to look at their site Imagine It and help make sure her legacy reaches its full potential.

I can’t imagine what her husband and family are going through right now, but there are so many happy memories she created, that I hope they can be remembered at this dark time.

Vicky you will be missed, but your spirit will forever be strong, and in my heart and mind.

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New year, new start? Not in my world. I had the misfortune to end up in A&E at 1am New Years Day. I hasten to add, that it was not drink, or drug related, well it was kind of drug related, in that I couldn’t access the medication that stops my right hand side kicking and shaking. I usually administer it straight into my central line, but my TPN was up, so that option was out of the window. We phoned (I was at a friend’s house party) the emergency doctors, who eventually came out, about 2 hours after we phoned them, and I’d explained to them multiple times what was wrong and what I needed, only for the GP to fail to cannulate me (apparently hadn’t done it for 7 years!!) so he phoned the paramedics, who managed to get a line in, so the GP could administer the medication. Unfortunately by this time my spasms were completely out of control, and my rescue medication wasn’t enough to stop them. After some coercing by the paramedics the GP gave diazepam, which didn’t work and I was bundled into the ambulance. It says a lot about your lifestyle when the first people you greet happy new year to are paramedics and a Doctor!!

Fortunately A&E was quiet when I arrived, apparently I timed it well. Was seen relatively quickly, the doctor came back a bit later and asked me had the medication helped, he wasn’t too impressed with my response of “what medication?”. Think someone may have been in the dog house with him for that. Was given yet more diazepam, which slowly calmed the muscles, but I was still completely with it, which I think he was rather surprised about, but clearly doesn’t know that many EDS patients don’t sedate very well!!

Eventually made it home about 4:30 am, got to bed around 5 and was meant to be up again at 7. Kind of failed to do that, which meant the care agency again went against my wishes and phoned my parents to ask what to do. I’m 27 and my parents are not my keepers, and so don’t know where I am at all times. They are meant to do use an emergency key, but apparently that was beyond the call room staff, I must have the same conversation with them every couple of months.
Carer located me finally, I did some essential stuff and then crawled back to bed. Was a very quiet day unsurprisingly.

I was back to training on Wednesday which was good, but still no time on the water, as the club is flooded still, which is a real shame, but what can we do?

I’m really giving my body clock a battering this week, after not getting to bed until after 5 on Tuesday, today I was meant to be up at 3:30 to see one of my consultants in London. Hospital transport say you have to be ready four hours in advance, so that was 5:30, and it takes two hours to get all my medical stuff done as well as standard prep stuff. In reality I woke up at 4:47 and panicked!! Thankfully although they say be ready four hours in advance, I’ve never known them come more than three hours early, so luckily I had a bit of time to spare. Consultant was wonderful as ever. He is the one who refers me to people and generally just makes sure things are ticking over aka tells others that they’re being unreasonable/ridiculous etc…

Tomorrow I start back with my PT, I think it’s going to hurt, but then as they say

No pain, No gain

Then I’m heading to the local hospital to see my orthotics specialist, I’ve lost/ had stolen one of my ankle braces, wanted to ask him about stronger ones anyway. Quick turn around and off into the city to see a friend, pick up a few bits, and have an eye test. Going somewhere new to see if I feel happier with them. Oh and then in the evening, I’m going out to a friend’s birthday, which should be nice, although given the week I’ve had an early night might be more tempting!!

It’s been a crazy week, not just on the training and medical front, but on the personal side, I’m not one for airing my laundry in public, but there’s been a lot of emotions running round.

I’m hoping for a more straightforward week next week, unlikely to happen given it’s me, but a girl can dream can’t she?!



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