An Unexpected Photography Project!

My Glomus Jugulare Tumour

I had a very interesting start to 2009, on 7th January I went into hospital to have a Glomus Jugulare Tumour removed from behind my right ear. Obviously when you hear something like that about yourself then it’s a worrying time, and I have to admit that I was really nervous about having the operation, but it would have become life threatening so I had no choice. Never one to waste an opportunity though I thought I would share my experiences, and of course being a photographer I thought I would document it with a couple of self portraits, so to speak. I took them once I came out of hospital and I’ve added some of them below, they show my scar nicely (which I’m quite proud of).

Angiogram and Embolisation

So first I had to have an angiogram and embolisation to cut off the blood supply to my tumour. Which has got to be the single weirdest thing I have ever had done to me. Briefly, while under x-ray they sent a small tube (in my hip) around my body it seemed, eventually ending up at my ear where they fired (yes fired) tiny balls at the tumour blocking the blood vessels that were supplying it. I could see myself as an x-ray on 6 screens – very surreal. Anyway the images were put on disc for the surgeon for the next day…

The Operation

I’m convinced to help settle my nerves the nurses gave me surgical stockings to put on, which have got to be the single most annoying, how do these help anyway, impossible things to put on, by the time I got them on I was shattered.

This photograph on the right was taken just before the stitches started coming out, my husband took this one – quickly because I couldn’t keep my arm up for long. I do quite a good Frankenstein impression, don’t you think?

It was funny how my mind and body reacted to the general anaesthetic, the operation took 9 hours from 9am to 6pm (yep you read that right – 9) which the surgeon was pretty excited about telling me as I woke up, along with how well it had gone. I was a little surprised by how long it had taken, I’d been told about 4 hours. But for some reason the only thing that concerned me at the time, was whether the surgeons had had any lunch! They thought this a strange question too, apparently not a lot of people ask that. Now as I said at the time, if somebody’s messing around in my head with a scalpel then I want to make sure they’re paying attention, and not thinking about lunch…that seemed to amuse them.

Top Tip – beware of long hair when having surgery around the head area. Bad mistake, cut it off, go short for a while or at least don’t have it really long. My hair ended up in a horrible matted mess (blood from op) that stayed up on it’s own and nobody wanted to touch because of the post operative swelling!

I didn’t make it easy for myself with this photograph, it was taken about a week after the operation because it had been too painful to hold my camera before then. Yes you could say a tripod might have been in order, but thinking clearly was not my forte at the time! Oh and this was better you should have seen my arm the week before, all of it was purple.

And then the recovery starts…

Is ignorance bliss? I think knowledge is a two-edged sword, too much of it can be a bad thing but not enough can also have it’s problems. I had no concept of how bad the operation was going to be, and how long it would take to feel anywhere near right again. The 9 hour operation definitely took it’s toll on my body. It was a steep learning curve with everything from post operative swelling in my neck, to taking 6 days to get all 35 stitches out. It has been an experience that I wont soon forget.

I am not the worlds most patient person so I’ve found my recovery hard, not least because it’s been painful to hold my camera to take shots of anything, let alone my head. I never realised how much I use my neck muscles for simple tasks. And although I’m still in some pain with my neck and ear (it’s still perforated, the ear drum that is). I’m improving all the time and slowing getting back to normal, phew! This is a more recent shot and you can see that my scar is healing nicely and my hair is growing back really quickly. Now all the stitches are out and the scabs have come off I might be able to get my hair cut!

I did put my life in the hands of the surgeons and medical staff and that was scary. But I do thank all of the team that looked after me and for everything that they did for me.

Mandy

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