On Saturday it will be a year to the day that my life completely turned around – and not for the first time.
I’d been unwell for 8 months but had no idea exactly what was wrong and neither did the doctors after referrals and scans aplenty. I was in severe pain and although I’d been here twice before, this was different. I’d had persistent pain in my stomach that pain killers did next to nothing for. I was in agony frequently and increasingly and I was often unable to walk without razor sharp pain, move or wear anything restrictive like jeans – and I love wearing jeans.
I struggled in to work and well before Noon I was barely able to function. I went up to a quiet room to get away from everyone and so that no-one could see how bad I was (didn’t want the fuss). When almost everyone had gone, I came down, made my excuses and left. I had every intention of coming in the next day but ended up at my Mum’s place and unable to go anywhere. I threw up twice (clear liquid), I burst into tears because the pain was relentless – I couldn’t get comfortable in any position and I wished I could reach in and pull out whatever was hurting me so intensely. Mum used to be a nurse and she was very, very worried. I stayed overnight.
I had not felt like this since a similar episode in early February – basically, I felt as though I was dying. I wasn’t wrong. I was in the centre of London and I struggled home with my son, who was worried sick. I was doubled over in pain on the underground, in the street, on the bus – nobody cared. I experienced what it felt like to be invisible in this city – it’s not always like this and I’ve often benefited from the kindness of strangers. But not that day. The pain subsided in the evening and then in the early hours, it all went bananas and I was unable to move at all. I called for an ambulance on the advice of the on-call doctor and when I was finally seen by a doctor (a real bitch) and by which time once again the pain had died down, she gave me pills and told me in no uncertain terms to not come back if it happened again – I should have just called my GP when they opened in her opinion.
Anyway: After lying on Mum’s sofa all day, groaning, the pain subsided a little by 8pm but then within an hour it had ratcheted up again – and this time I was petrified. I was afraid and alone in my old room, panting and on all fours, sweating like I was in front of a furnace. Words from scripture came to mind, about Jesus sweating drops of blood, the agony in the garden… I had never sweated like that my whole life, great drops falling like rain. It was ridiculous and I couldn’t even call out for help because I was trying to concentrate on breathing and not passing out. Luckily my son came to check on me, just as I needed to throw up (again clear fluid). I told him sharply to get my Mum to call an ambulance. It was a Friday night and I knew it would likely take hours – and I wasn’t at all confident they’d get to me in time.
I literally writhed in pain for hours and ended up on my knees on the floor and with my head on the bed while I kept focusing on my breathing instead of the pain (no easy thing) and doing something not unlike a buddhist chant – and it did go some way to relaxing me. Eventually the pain subsided so that it wasn’t like someone was on the inside pinching me (where everything pulsed) with pliers, but pinching with tweezers instead – still sharp but slightly more bearable. The ambulance came at about 2.30am – 5 hours after being called. A farce ensued whereby one of the ambulance personnel could not handle a wasp being inside so we could not drive away until it had been chased out – this took about 10 minutes but it felt like an hour. I did not have the energy to shout “For fuck’s sake, I need to get to the hospital NOW!!” but I think my face told the story…
So in the small hours of August 16 I was admitted to a ward around 3 hours later, much to my shock: I thought they’d send me away with a flea in my ear like the last time. So for the first time in my life, I was facing a lengthy hospital stay. My one and only hospital stay was little over 24 hours and was when I gave birth. In A & E and again on the ward, I underwent several painful internal and external examinations that made the pain even worse and always just as it began to calm down. I cursed the sky, my body, this life, the insensitivity of junior staff who thought all I needed was a shit or Pepto Bismol – what the fuck? Does constipation, does indigestion really mess you up like that? I doubt it!! In fact I know the symptoms I had were far removed from what you see under those circumstances. I pity anyone who’d have my symptoms when all they need do for relief is belch or block the toilet… I see the funny side now – I fucking did not a year ago.
Mum suspected what the docs had failed to detect in all the examining, talking, scans and x-rays: that I had appendicitis. In fact, that wasn’t discovered until I was re-admitted for an operation a month later… The clear vomit, the acute pain, the pain subsiding and then coming back with a vengeance. But there was more. What they did discover was that I had a huge ovarian cyst that had burst and that another was waiting to pop like some grim balloon. The prodding and poking had made things worse (I’d been poked and prodded in April several times, inside and out with a view to an operation in May). This was a party I didn’t want to be at. I dissolved in silent tears, with Mum at my side when the doctors left . I had to be admitted to the gynaecology ward and I wasn’t going anywhere for a while. What a shit start to my time off work. What a shit time for my son with whom I’d planned so many things, whether I was in pain or not. How awful for Mum to see me like this…
I was in hospital for close to 14 days and I was desperate to get home whilst at the same time oddly enough, I was enjoying round the clock care with drugs on tap; they wouldn’t let me go until the drugs they were giving me enabled me to manage the pain. I was on liquid morphine. Most of the time I needed high doses but most of the time it didn’t help. There was another woman in almost the same boat as me but when she was admitted it was a Sunday and the ambulance came quickly so they operated almost immediately – I knew her pain (she was crying out and her Mum was beside herself) and it was thanks to a formidable young nurse that she was operated on within an hour of getting onto the ward. They got to her cyst before it burst. Lucky her but her ovaries on one side had to be removed.
My story got far more serious. Around day 11 of my stay, I was supposed to go for an MRI and instead met with the man who saved my life (along with 3 other surgeons). He was going to do yet another internal exam (miscommunication) and I said no. No. I cannot undergo another internal exam when I already had several that week. No. I was meant to be having an MRI. No. I can’t do this waiting around and pills and morphine and the like. Please, just operate, please do a full hysterectomy.
He agreed, immediately and unreservedly. He fired a shot in the arse of the person who fucked up and told them to put me at the front of the queue for an emergency MRI that same day. I’d have hugged and kissed him if I’d had the energy but I had nothing left at that point. I wasn’t exactly relieved. I knew what I was asking for, knew what I was facing. All the doctors before him had said no to me (because I was too young), heck even I had decided against hysterectomy because I had hoped to have another child. The surgery in May (that I cancelled because the pain miraculously went away between my son’s 16th birthday and the end of his GCSE’s), would have been a D&C procedure because they thought the issues were due to 5 large fibroids. It would have been the worst thing given the seriousness of my condition. And I had dozens of fibroids, not 5…
You see apart from the multiple fibroids that were pulsing and in their death throes, there were another 3 massive ovarian cysts and I had endometriosis. I had no clue that I had endometriosis, none at all. Having read up on it several months after the op, it should have been obvious and I had grounds to sue. I didn’t and I won’t.
In late September I had the op. But it wasn’t just a bad case of endometriosis – it was so advanced that it had covered and become stuck to my organs and had coated my insides so thoroughly that the doctor, that wonderful man who’d ordered the MRI, told me that in all his years he’d never seen anything so severe as what he saw when he opened me up. He said he had no idea how I had been able to maintain my day to day life for the past 9 months when the condition was so bad I ought not to be standing at all. I reminded him that in August, I had gotten to that point with finality. I also said that in my family, on my Mum’s side we have a VERY high pain threshold. It’s not a good thing to be able to withstand so much pain and I don’t wear it as a badge of honour. My pain threshold is so high that my ex used to think I was pretending when I cried and asked for his help whether it was this pain or any other pain (arthritis afflicts me from time to time to varying degrees but it’s nowhere near as bad as it once was). Trust me, I’m so independent and I did not want to ask for his help, so much so that I’d rather struggle and end up hurting myself more, than ask him to help me open a can of beans because some of my fingers were inflamed for example.
Wanker? Yes. But I’ve come off topic (though the stress he heaped upon me and laid at my door across a quarter century went a long way to exacerbating and prolonging the health issues I had). But I’m also to blame for allowing myself to be so put upon and for so damn long.
So, in the end a 2 hour op went on for over 4 and a half hours; when I went down for the op, my body resisted the anaesthetic for over 40 minutes and much to the anaesthetist’s surprise – she said I was very strong, though I didn’t feel like I was; 4 surgeons worked on me to remove the crud that was all over my organs; they discovered that I had a ruptured appendix that had healed over more than once so they removed it (it had been inflamed by “the endo” and had been grumbling all this time); I had to have 5 blood transfusions because as fast as it was going in, I was bleeding out; I was minutes from death when they gave me the 5th one; I stayed in recovery for 5 hours because my blood pressure was dangerously low; in the morning I had to have a 6th transfusion on the orders of the anaesthetist who came to check on me (I had become big news in their dept. and in the gynae dept. too) or I would have died on the ward (and none of my bedfellows would have been surprised as they told me they thought I was going to die in the night because I “looked like death warmed up”; my awesome lead surgeon told me that morning in a quiet, small and somewhat strangulated voice that “you gave us quite a challenge…it was a good thing you signed those consent forms, otherwise…” and he let it trail off there. When he left I went into shock. Someone came to see me, they wanted to ask me how I’d managed with all the pain before the op, they were going to write it up in the medical journals and I was to be a case study as they needed to pick up on people like me far sooner. Yeah, no shit Sherlock… I was in no mood for twenty questions. I’d just found out that I nearly died in theatre. You can fuck right off.
I stayed there for 7 days; it wasn’t great because I couldn’t get a bed on the wonderful gynae ward of my August stay. I was on a surgical ward with only 2 people who had similar experiences to mine and 2 selfish old women one of whom drove me nuts and I complained and there were also 2 thoroughly nasty nurses on the ward about whom I also complained. Now me before the op might have put up and shut up and kept her head down but after what I’d been through and needing to recover well in those first few days, I was in no mood to suffer fools, selfish bitches or incompetents gladly. When I don’t get enough rest, I can get migraines and I was already very weak, so weak I could barely speak and that felt so odd – it’s not something they make up in the movies, you really are so weak you can’t speak properly. The selfish old bats kept gas bagging and also calling out in the night after lights out instead of pressing their buttons and waiting – they kept the entire ward up. We all fumed but it was me, ironically given I was the weakest and had had the biggest surgery, who spoke up and in polite terms told them to please shut the fuck up. I’d had such a bad migraine that morning that I’d vomited 3 times and been unable to eat at all just when my appetite had returned. They didn’t like it and I got verbal abuse off one of them who said, with venom, that the most injured child gets the most attention and how come it was alright for my dozens (jealous? Yes) of visitors to make noise (they didn’t I said and they came during visiting hours)? But guess what? They shut the fuck up and we all slept soundly for the first time in days. The one who gave me verbals was very nice to me on the day I left for home sweet home – I had sorted out glaucoma drops for the other selfish old cow, her having waited 4 days for them; poor administration, the NHS in its’ worst form, meant she had gone without them for far too long. I’m not a bitch you see. Treat people right. I cannot stand an injustice and will fight for you even if you’ve been horrible to me for no good reason at one time or another because if it’s wrong, it’s wrong and I want to see things put right. I thought to myself “Yeah, you love me now don’t you bitches”. Jeez… When I told my Mum, in creole, what had gone on, she glared at them and I thought they’d turn to stone. They knew I was filling her in, but still Mum was nice to the mouthy one when she couldn’t find her brush and she saw it on the floor and picked it up for her. Guess I get it from her. Guess our attitudes must have burned them too but that isn’t why either of us did what we did.
So much more happened and this is a much edited version but why am I writing about it at all? Truth be told, until now I’ve struggled to commit to paper what happened to me between January 2014 and now. As the August and September anniversaries approach, I feel ready to say something and chose to say it here. I tried to write about it a couple of months ago but I got emotional and couldn’t quite face it. I’ve said nothing of the long, trying and frustrating road to recovery that is in fact ongoing. I still have to be careful and l get twitches in my stomach, post-op muscular jolts as I knit back together inside and reminders that I’m not 100% yet and as scar tissue forms, that also causes spasms not unlike the “endo” pain and which caused me some worry last week. I am having such “pains” as I type this. I’ve said nothing of the immediate onset of the menopause and how that affects me physically nor how it affected me emotionally in those first months. My life is utterly changed and for the better. I can live with the relatively few menopausal symptoms that I get and I am very lucky in that regard.
I was sorry though that I could no longer have children, despite being 43 at the time and single. Still I don’t dwell upon it and I actually feel liberated by the idea of sex minus babies – however being Catholic makes me pause and not jump right in! You can remove my womb but remove adherence to a basic tenet of my faith? Now that’s an altogether tougher procedure! But after what I’ve been through with the endo and life in general, I’m more flexible about many things. I have a son headed for Uni in just over a year so I’m going to be free to live my life without restraint – another child at this time of life would I feel have been madness. It was just a sentimental notion I had held onto about having a little girl like me, with curly hair and ribbons and bows and pretty little dresses. I did really want to know her but I was blessed with an incredible son – and some people can’t have kids at all so I count myself lucky to have him.
I am writing this for me but if anyone gets anything good out of it, fill yer boots. So many cliches spring to mind about my journey but to use one, life is short and I almost lost mine on several occasions last year. It changes you and if you just settle back into old and bad habits after peeking into that black hole, shame on you. You should know better than to let yourself get shafted or fail to embrace opportunities when you’ve been given a second chance. I had more chances but didn’t know it. What I do know is this: don’t let people shit on you, don’t shit where you eat and if someone shat on your plate don’t eat their shit – walk the fuck away! Hindsight is a bitch right? But you don’t have to almost die to wake the fuck up. I woke up and went back into a coma more times than I care to recall and more than I am prepared to admit to. I am ashamed of the life I “lived” and the people, especially my darling son, who got affected by my rotten behaviour while I laboured under a rock that was dropped on me from a great height and which I did not deserve. So, what was that rock?
My ex had an affair and had a baby with his amour 2 months before our son was born. Who did he sleep with? My sister. When? It began before we married. I had my suspicions, called off the wedding 2 months beforehand but he so convinced me that I was wrong that it went ahead and only a few months afterwards, she was pregnant, had an abortion then got pregnant again and kept the baby (who I happen to love very much). It was not until 2 months ago that I finally had enough of my sister’s shit and cut all communication with her. I love her, care about her but she doesn’t give a flying fuck about me or my son. She has and always did have my ex in her life, by her side and by their kid’s side all these years; my marriage was a sham, a shell, a joke. No love from him for me, faking a feeling and me putting up a front that took an enormous toll on me and on my son more than anyone else. A great deal of damage has been done. The whole situation, trying to keep up the pretense of family all this time for my Mum’s sake (she asked me so I did) strained me physically, emotionally and mentally and intellectually I was some kind of cabbage. How else can I explain what I put up with for so long until I filed for divorce five years ago?
So again, this part of my story is heavily edited but I don’t think I need say too much more here and now. You get where I’ve been and where I’m coming from with my current attitude to life and how I live it. Who I am now was always there but beaten down and held back. All that rage was because I was contained, largely I’d bound myself and made sacrifices that left me on the floor, maybe lower still. I felt suicidal several times, I knew the black and twisted power of hate, I knew what it really meant to wish someone dead and the feeling, if you could call it that, which accompanied that thought is not something I ever wish to “feel” again. I wished my sister, flesh and blood of mine, dead. It was a scary place to be. I was as dark as it gets. There were no lights anywhere. And I used to be sunshine before him and before “them”. Now I’m more like the sunshine that peeps from behind the cloud on the weather map – I’m still under clouds from time to time but the sun always shines through. I’m more sunny than gloomy that’s for sure and there are far less clouds these days.
Emotionally, life is pretty much as it should be for a woman like me who has gone through what I’ve gone through and emerged standing – though I may walk through life with a limp sometimes! I get down about stuff but it doesn’t take hold like it used to and that’s partly due to maturing, partly because I almost died but also because my chemical landscape is much altered so I’m less emotional – and I was very, very emotional and highly sensitive. I have very little oestrogen so I don’t get put out as easily as I used to nor do I blub or stress about family stuff that would normally have me in bits. As a family, we did everything together even in the aftermath of the affair. We went on holidays together, days out, the lot. I care about my sister but I can very much live without her and do not miss her presence in my life at all. When we’d fall out I always missed her despite everything she’d done and continued to do, she and my ex flaunting their great friendship against the bombed out background of my ex’s relationship with me and our son. This time I feel no remorse whatsoever at doing to her what she threatened me with time and again over the years. I have cut her loose and I am all the better for it. This hurts our Mum but I couldn’t live for her anymore and the cutting of ties began some time before, but was cemented during my long recuperation.
I have to live for me.
I don’t really know how to end this… I’m over 4000 words in… My aim was to fully articulate my year, one year or so on. I wanted to do it, maybe needed to do it. I thought this would go in my journal and I didn’t expect to share it with strangers but it might do someone out there some good as I mentioned already. Maybe nobody will read this and that doesn’t matter because I’ve composed this for myself so that I can parcel it away and begin to move on from what was an horrific year.
To end positively: I laugh more, I paint and draw, I have this blog, I reconnected with so many people I’d lost down the years because of my difficult marital situation (the shame of it), I am stronger, I speak up more. I’ve finally grown into me and it shows because I am apparently “glowing” and there’s “something different” about me that no-one can put their finger on. People like what they see and I like it too. It feels good, I feel free and I’ll keep on learning and moving up, resisting the urge to coast through this life.
Now stop reading and – big or small, I don’t care – go change something in your life.
Drops of Sanity 