Against the Dark

 

 

So here I am pretty much ready to close the curtains on this chapter of my life.

High, high time.

It’s over 2 weeks since we left home and travelled up to Manchester.

It was easier this time. The ‘dress rehearsal’ paid off.

I knew the hotel. I’d met the people. I knew the process.

A whole level of anxiety removed that I guess I never really even registered before.

Even the same room in the hotel. Accessible twin. Spacious. Light. Perfect.

I was taking it easy on the sofa when someone on a support group posted that they were going to be on BBC North shortly.

It seemed poignant, quite emotional in truth, that on the eve of my operation, the BBC launched, in collaboration with Endometriosis UK and many other figures high up in both Endo Health care and the media, a big initiative to raise awareness of this shit disease.

For the first time since my diagnosis I was actually seeing interviews with both sufferers and medical health professionals reflecting the poignant reality. The truths.

Every single day I read about women in excruciating pain being fobbed off by their family, by colleagues, by their GP’s and Gynaecologists.

I think it’s fair to say that I regularly read on support groups “I can’t go on” and there have been a small number in my circles that have ended their own journey due to not being able to deal with it.

But this was on ALL the news. They were saying it like it was.

A small light at the end of a very long tunnel.

 

I turned on BBC North in time to sit and watch my own surgeon, Dr Edmond Edi-Osagie being interviewed.

I hadn’t seen him for almost a year, it was SUCH a comfort to see him, hear his calm voice. Be reminded that I was in the very best hands possible.

That was what all this wait was for.

Here’s the link to see him talking.

Next day it turned out the admissions process was different this time round.

We’d been through all the long and dull paperwork trail and thankfully none of it needed doing again.

So bar being weighed and being asked at least 30 times (that was just pre surgery, it’s a wonder I’m not still beginning every conservation with my name and date of birth!) to confirm my details, allergies, whether I have any metal work in my body, whether I know what surgery I’m having… the list went on, it was straight onto the ward and prepped for surgery.

It was actually happening, and so fast!

My surgeon came round, we discussed his new found celebrity status, and he expressed his sincerest apologies for all we had gone through to get to this moment.

There are times in your life when feeling confident that you are in the best hands makes an incredible difference – last time this happened was when I went to get a ganglion drained from my finger. (Good old google, I just searched ‘bash it with the family bible’ to remind me of the word ganglion!) and the hand specialist turned out to be a huge classical music fan and completely in awe of who I worked with, never a better moment (as a violinist) than when someone is about to stick a needle in your finger…

This was slightly different reassurance though, and it has to be said that neither Matt nor I missed the added pleasure of Dr. Edi-Osagie being one of the most stylish people you will ever meet! Those suits… and his leather shoes… after this moment we only ever saw him in white clogs and surgery scrubs, always a slight disappointment… there is the follow up appointment to look forward to of course!

Lying on the bed in the day-patient room pre-surgery was the start of a whole series of weird and such vivid and colourful dreams I was to have over the next few days. And I hadn’t even started on the morphine at that stage!

This one involved the ceiling being covered in black confetti made of old car tyres, rather Gaudiesque. Certainly dark.

And then it was time.

I said my goodbyes to Matt and took my backpack with me off to surgery… It’s funny, this was my sixth surgery, and I still think it’s weird to walk in to the anaesthetists room.

 

 

I remember a nurse sat next to me in recovery, and vaguely remember the moment I had played in my mind so very very often before surgery

Do I have a stoma?

No…

This was the very best news, and clearly all I needed to know. I remember nothing else about the recovery room.

 

Back on the ward 7 or 8 hours later and it was late in the evening.

I had a patient activated morphine top up, I remember using it, but not the pain.

I remember Matt in different positions every time I surfaced.

All revolved around him trying to sleep on an upright chair next to my bed.

The nurses were coming in regularly and not one thought to get him one of those hospital chairs with backs… the ones that normally sit next to all hospital beds?

Eventually I woke to see him curled up on the floor, in the corner, like a cat.

Only then did they produce him a mattress. 

 

Like I said, the dreams were vivid.

Matt having an affair with a load of scraps of paper.

A 2ft high woman serving him soup.

An old fashioned crisp machine being  installed by my bed.

A woman in a pink jumper, grey bob and large moustache.

Arriving at a friend house in immense pain, only to find everyone was bathing in chocolate.

And they are just the ones I wrote down…

 

 

My Headspace meditation app took me through a lovely course on pain which involved picturing the heat, texture, shape, colour and movement of each different pain. Not only an amazing way to help realise that the pain is changing and evolving, but also possible fodder for a piece of art. Never a wasted moment!

 

The next few days passed.

In fact, all the days since have just passed.

Every one a little better than the last.

On the eighth day we went back to the hotel, though that day was nicely marked with an incident involving a ‘misunderstanding’ which led me to finding myself having had no pain killers at all. Safe to say it was not a pretty sight.

On the eleventh day my saviour cousin came to collect us and brought us home.

The thirteenth day I gave up the heavy duty pain killers.

And the fifteenth I washed my hair… my quite established dreads gone.

And here I am on day eighteen.

Still unable to be up for long. Unable to sit for long. Unable to live without my hot water bottle for long.

But feeling GOOD!

Feeling like I have a new set of legs. They actually move in their sockets. A huge bonus.

I can sit cross legged. New skills.

I can walk up and down steps, stairs even.

And unwittingly, while performing keyhole surgery on my ovaries, fallopian tubes, pouch of Douglas (seriously, how did a part of the woman’s body ever get named after a man?), vagina, bowel and pretty much every where else down there, they removed a layer of fug from around my brain.

And that… well that feels beyond good!

 

 

Endometriosis doesn’t go away.

I don’t not have it anymore.

As I type, my body could be producing yet more of the bastard endometrium that has trashed my body for the past ten (plus) years.

But I do know I have given myself the very best chance for a bright future.

The wait was long and painful, but worth every single minute.

 

 

 

 

As a quick epilogue (for sure the closest I’ll ever get to an Oscar acceptance, so do bare with me), I just have a few more words to say…

As I lay in my hospital bed for so long, I realised the vast number of people it has taken to get me here, I honestly couldn’t have done it (at least not so well) without them, so forgive me please a few shout outs…

To my dear friends who have carried me through. Through the misunderstanding of my symptoms, through the devastating effects they had on both my body and mind, through moments of insanity, loneliness and confusion. I am ever indebted.

To Christina, who rightly refused to let me accept my first Gynaecologists opinion. Without her this would be a VERY different story.

To my Nutritionalist Catherine Jeans who has helped me keep my body running at it’s own full capacity throughout and whose continued support I am so grateful for… a work in progress.

To my fellow Endo Warriors. Nobody understands how it feels like a fellow sufferer. The support network is vast, 24/7 and invaluable. My heart goes out to any and all going through this shit.

To the amazing Whitworth Locke Aparthotel (who knew that was a word?) in Manchester. They were supportive, kind, considerate and made a huge difference to a stupidly hard 11 days.

To Saint Mary’s Hospital. Life time indebted to Dr. Edi-Osagie, the calmest, warm-hearted and simply brilliant doctor you could ever want to meet. To his team and ALL the staff at the hospital. An amazing bunch of people.

And then my family…

Part of moving house to be near my parents was (in my head at least) to be able to get our son through the last few weeks. I cannot thank them enough for being there for him, and of course continuing to be here for me.

My sister (a GP) has been a continual assistance to both Matt and myself our ‘My medical team’ WhatsApp has been well used and her reassurance is invaluable.

My cousin drove a 12 hour round trip to pick us up and return us safely home.

And then my son who has grown up with this shizzle as part of his every day life. Watched me in pain, looked after me, nursed me and is now acting as a full time chef!

And last, but definitely most, my husband.

Hard to put into words how much he has done for me. How much shit he has put up with. How much responsibility he has had to take. How incredibly well trained he has become in all things household. He is breadwinner, house keeper, washing person, amazing parent, chef, nurse… the list goes on but I’ll spare him the blushes. And all that atop no real holiday, in fact nothing, for years, that hasn’t been massively restricted by Endometriosis.

He is fecking awesome and I am incredibly lucky.