Tuesday, 4 March 2014

On a knife-edge of disappearing...



It will happen soon. But I'll be back. I shall return to my blog, and being my usual idiotic self, and drawing and painting, and crocheting and knitting, and cuddling my impossibly brilliant and affectionate cats. I will be away for a short while. Though, I'm not certain what the official time-length or dictionary definition is for a "while".

In my last blog post, I told you about my January appointment with my consultant. It was ANYTHING but a surprise to me to hear him say there is no other treatment to try in an attempt to ease my pains, that there is nothing else to be done to stop my periods. I knew it a long time ago. Years ago. Nothing. Nothing to be done except the one thing I said years ago would happen. Nothing to be done except ensuring, unquestionably, that I could not have any more periods. Not ever again.

You may have guessed by now that the one thing which can be done to stop my horrendous and appallingly restrictive periods is for me to have a hysterectomy. And, if you did, indeed, say it to yourself, or even out loud (weirdo), you are correct. I have no prize to give you, alas.

But you can have coo over this ADORABLE hamster picture, by dgtecnozero on flickr.





Hormones just do not work for me, or with me. They make me suicidal, every bloody time. I'd stare at all the tablets in my cupboard and wonder how long it would take for me to feel sleepy, to not hurt anymore, to not feel anymore. Too many times I've felt that way because of apparently-harmless little contraception pills or injections. It just doesn't work for me. Everything doesn't work. Nothing has helped enough to make a difference so beneficial that it's been worth carrying on with, even if I did still have some pains or some fatigue. Nothing. Nothing has been the answer.

I'm 32. I can't work because of the pains, the fatigue, the heaviness, the depression, the tears, the unmitigated devastation this damnable endometriosis has brought me in so many atrocious ways, and with such ferocity that, some days, I sob so hard and for so long that I can not stand up, I can not speak for the destruction it's caused. And I can't do it anymore. I can't allow myself to go through these wretched and unyielding periods any longer, to always fear the next one, knowing how they will be but never when, and feeling all the pains days or a week before they start.


I CAN NOT do this ANY LONGER.


I deserve to have a break. I deserve to have a fucking break from all of this, to not be frightened of my own body, to not be a prisoner because of what should be an incidental happening, not THE EVENT. This is not how I thought my life would be. I did not think, all those years ago, in my precious childhood, and limited, solemn, and anxious teenage years that, in my early thirties, I would still be living in the family home, with no job, no ability to work, and claiming benefits because of an illness with no fucking cure. And dammit, I deserve to have a chance to live! I damned well do. It may not happen immediately after the operation but I'll bet I'll be a hell of a lot more unstressed about a hell of a lot. Hell. Yeah?


The operation, on Tuesday 18th March, is to remove only my uterus (and probably my cervix, too, which is good), since I need to keep the now-lonely left ovary in there for my bones, so that I don't develop osteoporosis and they don't crumble, and to keep hormones relatively unwobbly. The hope is that I will be able to DO STUFF. I've yearned, ached, desired to draw and paint and sell the work, and take commissions to draw people's relatives and cats and dogs and horses and rats and who knows what else? But... I haven't been able to. There's been one or two pieces here and there but I haven't been anywhere near well enough to do a "normal" *retches* amount of work. Not even sketching.


Walking upstairs to open the cupboard and my folders to get my sketchbooks, pencils, paints, and pens, then walking downstairs again, and sitting down to concentrate takes away too much energy and it's hard enough to sit on a sofa after taking morphine, trying to focus on anything to take my mind off the pains that won't stop. So... I have to stop them. And this is the only way. The Only Way Is Hystex. TOWIH. I'll have that.

I know that, after my operation, I may still have pains but to not have periods is going to make an extreme and extraordinary difference. And it will, I'm certain, take a very long time for me to be used to them being gone, rather than suppressed for a few months, and I'm concerned about how emotional I may be about it all, when the potential wound is past the ARGH stage. But that's for then, it's not for worrying about now.


And the cherry on the top of the piss-takingly-badly-timed e-v-e-r-y-t-h-i-n-g of it all? I have a period. Now. Just started, two days ago. Just before the operation to stop them. Just as Endometriosis Awareness Week begins in Britain. I did say, didn't I, in that last blog post, that my timing was... well, it's bollocks, isn't it?


In the last week or so, I've spent a lot of time online, updating my LinkedIn profile, (re-)opening my Etsy shop, opening a Folksy shop, creating and editing a facebook page for this blog and one for my general Multicoloured Pop Shop (i.e. pictures and information about my work), promoting my work on Pinterest... (They're all clickable links, by the way. Leading to places with my work and me. Click them, go on...)
Plus, there's STUFF on my Where am I? and My Artwork for SALE pages, in the tabbed section at the top of this page.


I'm really, really trying hard to get a head-start on things before my operation, so I don't have everything and more to do after, while I should be trying not to concentrate but just allow myself to get on with healing and getting better. I'm trying to gather as much business advice from various online places as I can, about accounts, business plans, contacts, connections, new media, and so much more. And it's a hard-going challenge. It's really difficult because of that fatigue and trouble concentrating, the tiredness and headaches, and lack of sleep. For countless years, I've wanted to BE an Artist, instead of just knowing and believing it but not actually DOING it. I've wanted it for so long. And now, for the first time, really ever, it feels like it might actually be a possibility. Really actually possibly. It might actually happen. I know it will take a lot of planning, albeit with lots of leeway for possible unwellness, but even the planning can begin. Planning for actual stuff.



I'll very likely be tweeting my usual crap - sharing megasweet pictures of kittens and rats, and pinning floral cushions and crocheted bears - before the operation. But, until the next time on here, if not before the 18th, look after yourselves.

And, now, I must ensure I rest enough to adequately recover from this, my last ever period, so that I can try to do at least some exercises and walking before my operation. That is assuming it doesn't have to be put back, again; it should've been today, Tuesday 4th March. But now, it's not. Now I have an extra two weeks to prepare, write lists of what to take, especially the essentials - puzzle books, reading book, MP3 player, glasses, phone, spare batteries, all those things. And the medication. They need a whole rucksack on their own. If only I could smuggle several of my most precious people in through the doors of the hospital with me to keep me occupied, and be there when I wake up... You know who you are, and this is for you.






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Saturday, 22 February 2014

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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Monday, 19 August 2013

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.

Thursday, 8 August 2013

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...

Tuesday, 30 July 2013

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...

Monday, 29 July 2013

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!

Friday, 26 July 2013

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.