As I struggle to keep my eyes open, I felt a need (for some reason) to show you my biggest cut yet. And it's adorned in a photo with stuff and roses and words and birds through phone apps and photo things.
It's past 2am. I need sleep. Here is one of my battle wounds, healing well with all stitches now out.
Sleep is now.
Occasionally, I forget what I've just been through, and attempt to cough. And then I remember. And I curse myself. Because it really fucking hurts.
I have four fancy new - and startlingly-neat - wounds, minimal gas pain in my right shoulder, and general post-operative restrictive pains. The hours immediately after I woke up were, without question, up there on the oft-unreachable heights of the times I've experienced my most terrifying period pain.
Post-endometriosis-surgery pains have been almost the same each time, for me; this was different because, as I found out a little later, my surgeon had to use a trocar on my left side to take out the pesky right ovary.
And, as ever, the nurses who looked after me on my ward were FANTASTIC. Such kind, caring, funny, sweet people. Definitely in the right jobs. I love the NHS. I really do.
Basically, I am all right and must rest. It will be some weeks before we - "My Team" - know if things have improved and if the right thing(s) was done. Recovery will be a longer process than I had previously thought; I have to double my three-week assumption based on my other operations. I did add a week to those recoveries but... Hm.
Thank-you to every one of you who sent such kind words and wishes and get well things.
It's all so very much appreciated, every bit of it.
I have to go, now, to do that resting thing. Until the next, reader...
Next Tuesday.
BAM!
Lightning fast.
Ohh, NHS - and especially the staff in "my" "departments" - I do love you.
Here we go. Again. Cue treadmills...
Laziness/tiredness tells me to copy and paste what I've already told select people, with some editing here and there. So I shall.
Bloody ill people taking up hospital beds. Don't they know my ovary needs to be analysed?!
Because I'm such a hardnut on megadoses of morphine, I'll need a lot more than The Average Joe after my operation, which will cause a lot of pain. So I need a bed. And the weekend saw a lot of people needing beds. So, instead of sending me home in severe pain, they must keep me in overnight. But they can't. Because there is not one bed free. Anywhere in the hospital.
*Add Lansley and Hunt blame here*
So, my op has been postponed. AND I was first on the list! Sod's Law is working well today. Next thing will be a period. "LOL" at that thought. No, hang on - that's not funny. That is NOT funny.
I'm not angry in the least; frustrated, yes, but whaddya gunna do? A phonecall or letter will tell me when I'm due in. Again...
Thanks so very, very much for the good wishes, love, and kindness. All of it is so appreciated by all of us here.
Time for tea, stamps, Rosie cuddles, and very probably a sleep on the sofa. STAMPS AHOY, SAILOR!
It's the finality of it all. The totally unquestionable end. It's the wholly different way of thinking, planning, living. Living. Living day-to-day without the fear of it coming back all too soon. The knowledge that it will not be coming back; it won't be "just" six months off, give or take other highly restrictive pains.
I don't have any love to give endometriosis, and I shan't miss my periods one tiny, weeny, neutrino-sized bit. The drastic change seems to be the thing I most think about: my being unable to have children despite not wanting any, anyway; the potential of being able to continue my Artwork without being forced to account for delays or spending weeks away from it; cancelling appointments at hospitals or dates with friends.
Essentially, having wants and being able to achieve them. Simple wants. Regular desires. Seeing friends, walking alone in the town shops, driving, travelling on buses and trains. Independence! Decades of hoping for it. Striving.
I'm trying not to be optimistic about possible results, while trying not to be too negative; I'm aiming for realism. I think I'm about there. I think.
A vision of me reborn, leaping and smiling, twirling in my flouncy new red dress like someone in a Special K ad ought not be imagined. By anyone. I perhaps have the hair for it but that's all.
Pain, I fully expect, will stay but at a (hopefully) lesser degree than currently. I expect, also, to keep this wretched fatigue, and all who sail in it. If my pains do decrease in severity, I hope, very much, that I shall be able to begin lowering the doses of morphine, with a view to eventually end up taking my old pal codeine, again.
But, first, I should concentrate on the operation which could change my life from the stressy bollocks it is now to something a bit less bollocky.
There's no bravery. There's no pity. There's nothing to be sorry about. Shit happens, and it just happened to hit my fan so hard it broke. So it has to go, along with old gurgly git here, The Right Ovary.
It's the undoubtedly emotional upheaval of it all which I keep coming back to. Even though this is my decision, it doesn't make these past few days any less difficult to get through, nevermind the day of the operation and the days after.
And, even if I did want motherhood in my future, could I put myself through this debilitation and the sickening terror of my periods for another five years, for example? I don't believe I could. I truly, honestly don't.
Science: sort it the fuck out. PLEASE.
The operation happens on this coming Monday, 29th July.
I didn't take enough tissue. As usual. The leaking of my Doctor Who water bottle was not helpful to my tissue situation. I knew I would cry. I typically do at those kind of appointments, those gynaecologist chats, those highly emotional discussions with my consultant about my life and potential problems and treatments.
I have tried every kind of treatment offered and explained and favoured.
I have felt terrible with various side effects.
I have been at a total loss as to what to do, in a quicksand of panic to stop the pain.
Since before my teen years began, all of that has not been right. There has always been something wrong. For at least five years, and at most of those tearful hospital appointments, I have complained about the incessantly dull but intense aches and shocking sharps that occur in my lower right abdomen. After both previous laparoscopies, in which my messy and cystic right ovary was "cleaned up", those pains (unsurprisingly) eased enough for me not to be halted mid-speech or mid-breath. They returned, as I expected, but the temporary relief was a kind of magic.
This last appointment had its own mention of the problematic egg sack. So, although somewhat reluctantly, it seems my consultant has agreed that it JUST MIGHT be causing those aforementioned pains and, as such, that right ovary is due to be removed in what will be my third laparoscopy.
My endometrium will be treated to a zapping, courtesy of Nova Sure, and my left tube will be clipped.
I shall undergo a laparoscopic oophorectomy, laparoscopic sterilisation, and endometrial ablation. I shall have one ovary remaining. I shall be infertile. I shall be sterile. No baby shall emerge from my nether parts. I shall have no more periods.
Let me repeat that bit, chaps: no more periods. NO MORE PERIODS. NO MORE PERIODS. Using words, I simply can not convey my joy to you.
I don't want to have this surgery. I don't want to have these kinds of procedures done. The truth, though, is that I, like so very many more girls and woman, don't have the luxury of a thing like choice. Of course I've thought this through; I have thought of little else for the past few years of my life. How to stop the pain? How to stop the periods? How to prevent the shaking and sweating, the incoherence and immobility, the disabling and sickening burning inside, the nausea, insomnia, migraines, anger, helpless tears, and countless unfulfilled dreams - all because of periods, because of endometriosis.
As I type, that right bloody ovary is causing those aches. The ovulationesque pains. The pains not supposed to happen while the ovaries are "asleep" during the menopause-causing injections. I've been having other premenstual pains and symptoms, too. Which has been jolly spiffing. Jolly.
What if I have another mental breakdown about what I'll have done? What if I regret it all? What if what if what if etc. and so on. It's all so fucking hard to live and it never seems to get any fucking easier. WHEN will an all-round, actual, definite cure be discovered? WHEN? It must happen. It MUST.
In preparation for my forthcoming operation, I've already bought two pairs of comfortable trousers and big old lady knickers for my inevitable swellings - elasticated waistbands are a definite NO. I have many a suitably-sized cushion to put over my bloated belly and under the seatbelt for the journey home, slip on shoes, blanket, mints, a non-leaky bottle for water, puzzle books...
Now I know something useful is going to happen, albeit not yet when, I want it done. I just want it done, and over with, out, finished. I can't wait to see if I change my mind about treatment or children. I have to do what's right - or as right as it can be - for how I feel now. I can't keep waiting and hoping. I can't. I won't.
I expect pain to continue long after I've healed. I think it would be naïve of me to expect any kind of "cure". But how I live, how my days are spent, they have to be better than this. It all has to be. And when I have momentary doubts about it all, I remember the periods, the suicidal depression, the sallow-skinned shaking, the unspeakable terror of that internal pain. And then I feel sure, once again, I am doing the right thing.
Tomorrow, my consultant is probably going to say he'll refer me to his friend and apparently highly-regarded colleague in London. I shall insist I am against it.
I'm as certain as I can be after Sunday's devastating sobfest that I want no more "treatments", I want no more "to see how it goes" or, "to see if there's some improvement". All the years I asked for help, all the people who let me down, all that time I've lost waiting for a possible reduction in pain, suffering through days and nights of unspeakable agony from periods, waiting for appointments, waiting for the artificial hormones to leave... I have had enough.
And here's a thing: the dihydrocodeine doesn't work enough now so I've been prescribed morphine. And this is when I "shouldn't" be having any pain. "Shouldn't" as per The Law of Endometriosis, i.e. "sod the rules; let's go against logic". Previous posts, if you don't know about the menopause injections, explain all that.
To think of all the places I could have gone, the festivals, the museums, the galleries, the friends in those beautiful foreign lands and in counties so close.
To remember the times I said I'd be somewhere but wasn't, the tickets I bought and couldn't use, the calls and texts and emails to let people know I had to let them down, again.
Because of a period, whether waiting for or having one. Because of the "mid-month" fatigue and bleeding and pain. Because of not knowing how I would be and not being able to afford risking wasting the money.
Because of endometriosis. ALL because of that.
I have never wanted to be a mother. As a child, I used to play with dolls and pretend to be a Mummy and pretend the dolls were babies and such. And I assumed the longing for my own baby would arrive. It hasn't. Mostly, children irritate me. Friends' children are really incredibly cute and sweet. Polite. But others? No. I really don't have the urge to reproduce. I don't ever see it happening.
Cats? HOLYMOLY. I LOVE MY CATS. Kitten paws? Cat squeaks? Purring? WHISKERS?? Adorable. I do girly squee stuff and say, "Awww!!" a helluvalot at those gorgeous fluffy lovely gorgeous cheeky monkeys. Cheekychops. I love my Rosie more than words could ever say. Ever.
I love to feed the birds. Love to. Woodpigeons, house sparrows, starlings, blue tits, great tits, fieldfares, blackbirds - GIMME. I clean their feeding apparatus, complete with many splats of their pungent guano (brilliantly poetic word for "bird shit") with a grimace but pride, because I know I'm helping them, helping the cheeky starlings and house sparrows survive. The comic antics of the stunningly-coloured woodpigeons are total entertainment, at which I do actual LOLZes. Truly.
Babies? Human babies? No. Not mine.
I can not risk my sanity any more than it has been risked already. My mind and body can not survive any longer in this permanent state of flux. On and off for the last 4 to 6 weeks I have wanted to end it all. Make it stop. Stop the hurt. Stop the tears. Stop the tortuous mire inside me, physical and emotional.
I am not unbreakable.
I am not stoic.
I am human and I bleed and I hurt more than is reasonable, and I can not stand it.
Endometriosis has beaten my medical team, and it will not let go of its grip on my emotions, my body, my entire fucking life. I have been ruled by my reproductive system since I was 12, at least since then.
I am adamant that I want at least both ovaries and fallopian tubes out. The quite exotic term for that surgery is "bilateral salpingo-oophorectomy", or BSO. Or BullShit Ovaries. Or Bye, Sod Off.
I have thought of little else for weeks, I know it's a drastic and HUGE decision, and I know it's not without risks but, as I've tried everything else that could be offered, what else is there?
Really, what else is there to be done?
