The Reappearance of Lady Scarfacts

If I were to attempt to blow away the dust and cobwebs from this blog and the path I took to get to it, I could well sneeze for a week, so I shan't do it. I shall simply type and publish and hope no-one notices how terribly I've neglected this place.

Good reasons exist as to why it's been so long since my last blog post; the morphine I have to take each day for the pains is still not conducive to energetic activity or prolonged concentration, and, of course, the ever-present fatigue is rampant. Not rampant, as such, but still there. Here. It's still with me is what I mean. Anyway... Groggy and heavy-eyed, I've thought every day of blogging and telling you about how my pains are, or how the most recent treatment(s) have been affecting me. Alas... I have not.

Last year, on the early-August morning of the day after the nth (actually, the third) operation I underwent to (hopefully) stop my periods *scoffs* and to remove the pesky right ovary, I managed to sit in the comfortable chair beside my hospital bed and scribble down my thoughts for a blog post I would type and publish in the next week or so. Hm. That didn't happen. I did, though, post a wordy-picturey-appy photo of one of my newest scars not too many days after the operation but it wasn't a "proper" blog post, nor do I consider the post, Home, a proper post. But I still have the scribbles! And here they are, just for you, dear reader:


Wednesday 7th August 2013

From what I could gather, I was at least fifty years younger than the four other women on my ward. The only people I talked to while I was in there were the nurses, and most of them were younger than me, which is a strange kind of feeling because I still feel as if I'm in my early twenties, not early thirties. All of the nurses were delightful, with the patience of every saint that may ever have lived. All that patience, all that selflessness, all that kindness. So much of each. And each nurse who helped and tended and literally supported me was full of pure lovely.

I wrote a note stating my solid respect for and appreciation of each of them. On my ladies-only ward was at least one elderly patient with a kind of dementia, and another who was exceptionally cantankerous and demanding, to the point where I felt evermore-compelled to throw a pillow across the room, aiming quite precisely for her head. Shortly before I left my temporary residence in a suspensionless-but-free-to-use-and-pushed-by-my-SuperMum wheelchair, for I was NOT about to attempt to walk the roughly-450-metre distance to the car to go home, I handed the note to one of the nurses. She read it and smiled, and said, "Aww, thank-you. That's really lovely of you, I'll show it to the other girls", which she did, just after. I can not praise those women more with mere words, as wonderful as words are. I felt so safe, so calm about being there, and so confident in their abilities.

As I wrote these notes at lunchtime on Wednesday to pass the time and capture on paper my feelings at the time, Scott Walker was serenading me with tales of Jackie, after The Clash set up a White Riot, and Edward Elgar's Nimrod made my heart swell, as it does every time I hear it. My Puzzler Pocket Crossword Collection book thing saw some inky action while I was in hospital but Sherlock Holmes and his doctor chum remained untouched, sadly.


And there my scribblings finished because Mother Ma arrived and gathered up my bits and pieces, and then we went home. And I recovered, and took things slowly and easily, and tried not to feel guilty about being unable to help with housework and the cats and the garden and so much more. The scars are now pinkish-purplish, with the right-side one still being ever so slightly sensitive and sore at times, and was also the one which seemed to want to keep the stitches in longer than I preferred. Crucially, I am right-ovary-free. Hoorah!

The outwardly-normal-looking right ovary, which I'd said, umpteen times, was definitely making me ill and was the cause for the atrocious pains on my right side was dissected and analysed and was found to be fairly well packed full of endometrial cysts and bits and stuff. Yes, I was unsurprised, too. At my follow-up appointment six weeks later, I did just happen to mention to my consultant that, "I don't have too much pride to say, "I told you so"...", to which he replied, "Yes. Yes, you did tell us so..." and I tried as hard as I could to suppress my smug-but-devastated face. All that time. All those YEARS of AGONY because of a tiny defective egg bag, which "appeared" to be "normal" *retches* but which was utterly knackered beyond repair. Because "it looked normal" on the outside. Lessons must be learned! Surely, they must. I like to think my consultant has learned from me, The Awkward One. Ever awkward.


In January, I saw him again. I told him that, precisely as I feared, aside from the continuing pelvic pains, my periods are getting worse, heavier, more painful, after Novasure. They are doing what I unequivocally knew they would, what they always do - they're reverting to their terrifying and physically- and emotionally-exhausting "natural" ways. So, there's another treatment which hasn't worked and, in my next blog post, I'll tell you the outcome of that New Year appointment, right in time for Endometriosis Awareness Week. My timing is nothing if not late. And slightly impeccable.

(Images courtesy of ManicXMiner, AIGA Design Archive, and Kaye Sedgwick for Endometriosis UK, respectively.

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Scar tissue.

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.

Home.

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...

C. U. N. T.

Next Tuesday.

BAM!

Lightning fast.

Ohh, NHS - and especially the staff in "my" "departments" - I do love you.

Here we go. Again. Cue treadmills...

Unforeseen circumventing.

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!

Monday, Bloody Monday.

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.

The Future.

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.