only connect

“Only connect the prose and the passion, and both will be exalted, and human love will be seen at its highest. Live in fragments no longer”

E.M. Forester, Howards End

I’ve been giving a lot of thought recently to why I volunteer. What am I trying to achieve? What does the charity want to do, and how?

Who gets what out of this- the hours and the energy that nobody pays us for? The work that nobody else sees or cares about. The work and the emotion that has Spurs Fan wondering at times why I don’t just give up.

family

Connection, story telling, getting stories heard. That works for me. I believe in what I do. It drives me batty sometimes, but my work has value.

Connection is vital to us all. Each of us important and our stories cannot be dismissed. We all have our place in the family of things.

When in doubt, turn to Mary Oliver

Wild Geese

You do not have to be good.

You do not have to walk on your knees

For a hundred miles through the desert, repenting.

You only have to let the soft animal of your body

                  Love what it loves.

Tell me about despair, yours, and I will tell you mine.

Meanwhile the world goes on.

Meanwhile the sun and the clear pebbles of the rain

Are moving across the landscapes,

Over the prairies and the deep trees,

The mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,

Are heading home again.

Whoever you are, no matter how lonely,

The world offers itself to your imagination,

Calls to you like the wild geese, harsh and exciting-

Over and over announcing your place

In the family of things.

 

conferences, as they should be

It’s lunchtime, and I’m having a great conference experience. I’m at home, comfy, watching on a screen. I can get up and move about, make my own coffee, chat to the smelly dog, get a hot water bottle. I haven’t had to wash my hair, draw on a face, or leave the house. I’m watching via a live stream that works, and joining the conversation via twitter. And nobody can see me cry.

#PPIConferenceGalway has been occupying me most of the morning. Full title: Public and Patient Involvement (PPI) in Research: working as partners, making a difference. You know me, I’m all for getting involved in all aspects of health & social care. Sometimes it’s about fighting the tokenism, sometimes it’s a battle to get a space at the table at all. If I didn’t think it could change I’d walk away.

But I’ve never had the opportunity to be involved in clinical trails. For many people, trials are the only options. For many people with rare conditions there are no clinical trials  because the interest isn’t there. No interest= no funding. Social media and the internet are changing the scope of trials-patients and families are finding each other and connecting across the world, creating a critical mass.

The tale that had me in tears today was told by Jude Sibley– Navigating clinical trials as the parent of a child with a rare disease. This is Jude speaking at a different event. Her presentation today was chilling, and powerful, and hopeful. Parent power is a wonderful thing. But since it doesn’t come cheap, what with all the trips to the USA to participate in trials, parents need to be fundraisers too. On top of everything else they need to do.

I had somehow missed the charity single that raised money for Lily Mae’s treatment. Jude and her husband are ballet dancers, Lily Mae is their Tiny Dancer.

This is their song.

elton-lily-620x434

WordPress won’t let me upload videos any more, but please do watch it, and spare a thought for all the families struggling to access clinical trials.

Now, to wash my face and get ready for the afternoon sessions!

 

 

lletz:tmi, tbh

There are many abbreviations in our world. I don’t know or care about most of them. Some are convenient, others I learn about as I need to.

Today, as a result of CIN2, I get a LLETZ. Excited? I’m not.

There’s nothing wrong with me, and screening & early treatment aim to keep it that way. But still…

Cervical intra-epithelial neoplasia (CIN) is a term used to describe changes in the surface (squamous) cells of the cervix.

CIN is graded depending on how deep the cell changes go into the surface of the cervix:

  • CIN 2 – this is when two-thirds of the thickness of the surface layer of the cervix is affected.

Large loop excision of the transformation zone (LLETZ) is the most commonly used treatment. It’s done with local anaesthetic, and takes 5-10 minutes.

See, nothing wrong with me that a needle and random bits of surface removing equipment won’t sort.

freaked out

But it’s my cervix, it’s this morning, and I’m a little freaked out.

Yip, too much information. Sorry, bloggy buddies.

Post script

As you may imagine, I survived the needle, the extraction, the unexpected electrical current & the chatting to keep me distracted. I have a hot water bottle and shall spend the day watching trashy tv. A normal day at the mcspec household…

I know nothing- visiting an exceptional spot

I’m no expert in disability issues, but I thought I had some notion. I sometimes use a stick, but haven’t used a wheelchair. I was used to managing my mum’s wheelchair for her last few years, but her other issues were so severe that we didn’t actually go to unfamiliar places

I do, however, talk a lot about aspects of rare disease, my own health, the value of listening to patients. Today was one of those days. I didn’t have too much to say, because we’d brought others along. G & J were brilliant, Dr C was content and A was glad he’d some along to observe. We were all delighted A was along, and not only because he solved a tech crisis of the sort created entirely by non tech folk.

The lecture theatre has a lift for disability access- at the end A, J and I headed towards it. ‘Press and hold’ said the button. A, a wheelchair user, did. And again. Nothing. Dr C arrived and set off to check the door at the upper end of the lift. It was closed properly so she went to find help. Maybe at Reception? Maybe a porter or a maintenace person?

In the meantime we were still downstairs. The next lecture was in full swing, all about bacteria, diarrhoea and gonorrhoea. I updated J & A on Dr C’s frantic efforts on our behalf. We whispered about our pets, tried not to think that we couldn’t access a bathroom, and got a little giggly. I wondered of A how often he’d be stuck like this, because of poor accessibility. ‘A lot’.

Eventually a man appeared through a door we’d been unable to open. He’d lead us out through the fire escape.  It was more like The Poisedon Adventure; a trek into the unknown, shifting random furniture and debris, all in an attempt to move upwards. There were steps to be negotiated. Remember that A uses a wheelchair.

poisedon

We made it back up to the ground floor in time to encounter the lift maintenance guy. While J, Dr C and I were horrified, he seemed to think it was all abit of a jolly jape- ‘That lift works fine. Have you got a key?’ A key? A key? Nobody mentioned a key. Dr C works in the building, regularly has guest speakers, and she knew nothing of a key. There was no sign on the door of the lift saying that a key was required. The key lives at Reception. But there was nobody at Reception any time J or Dr C had been there today.

A has a small adult wheelchair, which could be lifted. Had Michaela been able to be with us, we’d not have been able to use the ‘fire escape’. Her chair is much wider and would have had difficulties negotiating the rubbish, even if the route had no steps.

Michaela image

It was a mind boggling hour in a fairly new part of a prestigious university– where were equality, accessibility, safety or dignity?

The bit that I can’t get past isn’t the circuituous route through discarded bookcases and bits of machinery. It’s the fact that when the maintenance chaps arrived, they spoke to the member of staff rather than the most inconvenienced person. They looked over A, sitting in front of them. They spoke to him only to offer to get him a key if he used the building much. He doesn’t.

A completely avoidable situation, potentially dangerous and somewhat damaging. Well done, exceptional university.