Brain surgery and other scary things.

A reminder to live fully.

A reminder to live fully.

A few years ago I had brain surgery. The right branch of my carotid artery had an aneurysm, big enough to need surgery. I am alive because I have a clip (I call it a paper clip) on my artery.  The MRI also found a second aneurysm on the left branch of my carotid artery. Since then it has been checked regularly with an angiogram. I can’t have another MRI as the magnetism could  pull the clip out, or at least dislodge it. Doesn’t bear thinking about does it?

These were found by accident. I had no symptoms, but had complained to my doctor about my ear- feeling blocked,  giddiness, pain when I flew… it was probably sinus, but just to be sure…The ear was fine, but…I had an aneurysm. MRI, visit to a brain surgeon…too big to ignore, must be operated on.

Found by accident? Or one of the many blessings and miracles of my life?

Tantrum from me. Definitely did not want brain surgery. Handouts from the hospital- skull with piece cut out pictured on front. Threw it away, without reading. No one was going to do that to me.

great scar, shame about the hair.

Date set. The ninth of July. Uh oh. My most auspicious date, my day of celebrating my re-birth. How could this be anything but positive? Coloured my hair plum. After all, it was going to be shaved so I could experiment. A nasty colour, for me.

Brain surgery. It was too big to get my mind around. An aneurysm. It was too scary to contemplate, so I didn’t. The reaction of other people surprised me. They seemed to think this was significant, urgent, frightening… It wasn’t until afterwards I began to hear the stories: the young woman who had died on my local beach- an aneurysm had burst; the man who was now paralysed down one side, an aneurysm had bled…I had protected myself by closing my eyes to the reality.

Brain surgery. Yes, but they weren’t really operating on my brain were they, only an artery. Afterwards, checks every hour. What’s your name? What’s the date? (Who knows? I’ve had an operation, been in Intensive Care.) Where are you? Count to ten. Most questions I could answer, although I did ask them to come up with something different, I was getting bored with the same ones.

Yes. yet another cat picture! But, oh how he sleeps.

Yes. yet another cat picture! But, oh how he sleeps.

There were effects. My sleeping was destroyed, until it reached crisis point and I had to demand extreme help. My short term memory is affected. But…I am alive. My brain still works, quite well really. I like it…a lot. And I truly value it… greatly. In fact, I love and cherish it.

And I still have an aneurysm. A small one, but an aneurysm. I’m always aware of it, ticking away up there in my head. And now I know how serious that is. I have been told by the psychiatrist who treated me during the sleep crisis, that the brain suffers some damage as soon as it is exposed to oxygen. So mine has suffered some damage already. I do not want to run the risk a second time. I do not want to experience another sleep crisis. I know why sleep deprivation is a torture, I’ve lived it.

But, nor do I want to run the risk of the aneurysm bleeding or bursting. Neither have good outcomes- death or incapacity. So I have regular angiograms and trust the results, trust that while it’s small it’s harmless.

On Friday I had an angiogram, hence this post. I am left confused by the results. It showed no aneurysm. I ask “Do arteries heal themselves?”  “Has it disappeared?”  “Is this the result of a simple life with little stress?” “Can I celebrate or has there been a mistake?” I wait to hear from my brain surgeon.

The gift of life.

The gift of life.

Meanwhile I shall live this day- fully, richly, moment by moment, because I have experienced how fragile life is. I have no excuse but to treasure each moment I have.

 

 

 

 

Life with a stoma.

I live with a stoma and ileostomy. This means the end of my small intestine (ileum) is drawn out to my skin to form a stoma. I then stick a base plate to my skin and attach a pouch to that. The remains of my digestion- which for you passes into the large intestine for further digestion, empties through the stoma into the pouch. Literally, the facts of life for me.

I’d had ulcerative colitis, hence my long hospital stay and  life-threatening, traumatic emergencies.

Finally, to live or die meant emergency surgery and a body changed forever.

For more than forty years I have lived because of this.  Lived in gratitude, but lived in isolation, never knowing another person with an ileostomy. It’s what we do, isn’t it? We pick up the pieces and carry on. I have never thought about this or realized how lonely it’s been, until last year when I found my best friend from childhood again, and she too, lives with a stoma and an ileostomy. What are the chances of such a coincidence? And how wonderful that I found her!

We compared notes. What appliances do you use? and do you find that works best? What do you do when you’re in a room, full of people, everything’s quiet then your stoma starts gurgling and spluttering? And clothes! Can you wear something that’s close fitting across your stomach?  I always like to have a top that’s loose, do you?

So many questions, and so many more to come. I wish I’d had someone to talk to when I was younger, single and had met a potential lover. When do you raise the fact of a re-arranged digestive system and the additions to one’s tummy?  I wonder what other people do? How do you know the moment to call the ambulance when suffering a bowel obstruction?

We have only just begun this conversation. There’s so much I want to ask her about, so many experiences to share that only a fellow ostomate can share.

Here I need to acknowledge my friends, my friends who listen to me day and night, who meet me with compassion, love, tenderness, empathy and endless acceptance and support. I could not ask for more.

Then, just the other day, a friend who needed a catheter and drainage bag for a few days said to me (we were talking about showering) that he now began to understand a little of what I lived with every day. An insight for him and validation I hadn’t had before for me. Sometimes you don’t realize you lack something until you get it.

I was having a cup of tea with another dear friend when out of the blue she asked me about the details of stomas and pouches and all. Like, how does it stay on? Why doesn’t your skin become infected? What do you use? Show me. Show me the pouch. Show me where it is. Can I touch it? What do you need to do every day? What’s it like? Do you ever forget it’s there?

She listened. She listened with her full attention, no judgement, no revulsion, just full attention. Finally, she sat back and looked at me, then spoke.

“Kathryn, it’s a miracle.”

Other people have mixed responses, but there was nothing here but clear insight:  “It’s a miracle.”

And it is. I live with a miracle.

I offer this to others who live with a stoma: colostomy, ileostomy or urostomy in the hope that it may offer some validation of your daily existence. And in the hope that this post may begin a supportive community. Talk to me!