Hello readers, hello blog, hello words.
I’ve had the last month offline to go and spend some (temporary) time in two different kingdoms called ‘surgery’ and ‘recovery’…changeable time, testing time, exhausting and painful time, revelatory time that’s made me feel like I’m standing on the edge of the earth, standing on top of the world, just standing. Within those kingdoms have been visits to other lands…from painkiller and (py)jama, dream and daydream, fear and disbelief, and hope and peace (with TV, movies, excessive amounts of reading and journal writing thrown in). As some of you know, I’ve been waiting for major surgery for the past year. It was the reason why I had to leave my life in China, in Shanghai, just over a year to the day (which I miss greatly), why I’ve had to stop, stop work, cycling and anything remotely active, stop thinking, and why I’ve felt like I’m living in another land of limbo, on hiatus, not sure whether I’m coming or going. WARNING – this is likely to be one long blog post (as I have extra time on my hands)…and incredibly honest and in part graphic, so go and get a drink and some comfortable surroundings…and be ready to know more about me than you probably need to…but I write this in the hope that it’ll help and reassure those that have been through as great or comparable ordeals, that these journeys make us into who we are, with a greater depth of understanding and empathy for each other, and with a greater strength and drive for life. I really do look at things differently now. A brutally, clarifying process where I can’t wait to just start being Rachel again…
Some of you might have heard me refer to triple organ chaos, surgery kingdom, “PK” (painkiller) kingdom and Amoy tiger tummy over the past few years and recent months. According to my surgeons, I’m a very unique case for my age, where my problems should only happen to someone who’s already had numerous kids or who is 60 years +. However, I’m 30 (apparently) and young (apparently – although I still see myself as a kid every single day…they even thought I was 21 on the ward). Therefore, I named my tummy after the Amoy tiger as it is a rare breed and China is, obviously, an integral part of my life. Also, my tummy is a tiger as it gets this tiger fur-like scarring and bruising visible on the skin that appears like a tattoo when things are bad inside (and sadly still does) and also sounds like a tiger roaring, if and when, it decides to work. “Triple organ chaos” refers to three organs (my bowel, womb and bladder) that decided to make a move into their own new lands as I’ll now explain. Sounds all a bit cryptic right? As ever, I’m being a word girl playing with language and semantics.
So, in June 2003 I had a rather uneducated, accidental, and (looking-back) very stupid car crash. How on earth has it been ten years already?! I was driving my brother’s red Fiat Cinquecento Sporting (a car that I swear defined the new Millennium with its boxy toy car-like demeanour) through my parent’s village in Staffordshire after lunch, to collect my mom from work. I was wearing a size 0 brown linen Gap dress with patent red flip-flops and my hair in a high school pony tail when I looked into my rear view mirror for what seemed like no time at all, to, at 40 mph, end up in the back of a stationary Vauxhall Astra who was waiting to turn right at a junction…and here’s my most embarrassing admittance, the seatbelt was only over my waist as I don’t like things by my neck at the best of times. Note to self and to all you readers, safety first, wear your seatbelt, which I know is particularly hard in Chinese taxi’s! Not the cleverest of Rachel moments. I crashed the car right outside the village shop where I once worked where a good friend was working at the time (he has the same birthday as me)…he was my saviour in that moment and it will never be forgotten (thank you Dave). Within 24 hours, I was producing black tar-like blood in my urine with chronic abdominal and back pain (that I’d suffer from for years after that moment) and since, have dealt with a world of renal and digestive troubles, on top of other things I’d hidden from people for over half my life. Things inside decided to not work or process in the right way…some of which got better, others got worse…where last summer on a brief holiday trip back to the UK from China, my abdomen partially collapsed (“triple organ chaos”) as I stood in my parents bathroom. I will never forget that moment as I stood there in the bathroom…when it all just moved in the click of a finger. I can remember staring at myself in the pine-framed square mirror with my hands resting on my tummy as if it was just going to all fall out and I needed to stop it, staring back into my panic-stricken eyes as I questioned what on earth had just happened. This was not good, and I knew it was a complete game changer.
From that moment, I saw new medical specialists who told me I needed to return to the UK for treatment…and it is one of the hardest things I have ever had to do…to leave a country, a dynamic, friends and “family”, a culture that I’d cultivated and created, my life where I returned to the UK just over a year ago to the day. Again, where has that time gone?! Over the past ten years, I swear, I’ve had every type of intrusive, soul-destroying yet confidence building, no fear now of getting naked for doctors and nurses, medical tests…from routine blood tests, ultrasounds, X-rays, CT and MRI scans, dye injections, radioactive drinks and meals, biopsies, cameras in every imaginable place possible and investigative surgeries. I’ve trialled and been on a plethora of drugs and can 100% say that I will always hate needles. I’ve been told things that I doubt I’ll ever get my head around. My case(s) has been taken to research boards as some things have been totally unexplainable…as with a lot of things in Rachel’s life (I have to be complicated right? I have a habit of being unique)…where I’ve seen and baffled most urologists, nephrologists and gastroenterologists in the Staffordshire and Shropshire region, finally going under the knife on Friday 20th September. The surgery had actually been cancelled twice before earlier in the year…unnecessary stress that I could have done without.
The procedure was a laparoscopic ventral mesh rectopexy and sacrocolposuspension with intussusception. Say that three times as fast as you can…because I can’t, let alone remember it to write on forms. Its aim was to restructure my abdomen (“triple organ chaos”) using organic pig mesh – I am now bionic, who can say that? – where one of the many pieces is pinned to my lower spine (yes, it hurts)…putting everything back into it’s somewhat normal position in the hope that it would encourage things to work again. The surgery was pretty much straight forward as such…four-point keyhole surgery…however, it was bigger than expected with more cuts and incisions internally between organs…and with a couple of post-op, recovery complications. I was actually only in hospital for a few days (discharged early as the ward closed over the weekend(?!)) then, and not really that surprising, readmitted within a few days due to one of the complications. The surgery happened in a slow, numb, whirlwind of a utopian nightmare kind of way…a contradiction if ever I wrote one. I was frantic in the months and days leading up to it, not being very good at sitting still, though I’m not very good at that anyway. On the actually day I was sublimely calm and it just seemed to happen. Before I knew it I was in recovery, floating through the delight of a liquid “PK” (painkiller) kingdom, trying to get my head around the feeling that all my organs had moved. Woah, this is so strange…so, so strange.
One thing that I cannot believe is how much you rely on your stomach muscles to do EVERYTHING, from sitting up even if only a tiny, tiny increase…to moving and walking and making one foot step…to lifting your arm let alone an object…to laughing as you simply cannot laugh one bit when you’ve had surgery like this and it’s so hard not to…to just functioning…it was and is excruciating. Frustrating. Annoying. Destroying. A pain like no other. At the beginning, I had a stoop, was walking like a male cowboy, constantly with my hand on my 6-month pregnant-looking swollen stomach that has thankfully subsided.
“You look like you’ve been shot by a machine gun…”
…um, thanks?! A comment from one of the nurses as she was reapplying dressings that made me think, should you be saying that???, yet at the same time trying not to laugh on a painkiller high. I wish I could say the scars were from some dramatic hollywood action film-style shoot out.
So where am I at now with it all? Well. I’m four weeks into, half way through, my rollercoaster ride in recovery kingdom that doesn’t seem to be easing up. Although the surgery was somewhat straight forward, it hasn’t done what it hoped to do…it has basically swapped one set of challenges for another in terms of some things will just never work right like daily bodily functions, and other things just not work at all, some of which I knew before the surgery and I’m slowly coming to make peace with. Apparently being a mother might not be a chapter in the book of Rachel. The complications are making the recovery process slower, I get exhausted so quickly where the interim naps and liquid diet in the early days makes me feel like either a baby or an old woman. The worst of the pain has gone in part, reappearing when you least expect it. I have become a pro at commando rolls to get up, finding other ways to move things, having no fear of asking for help wherever I am, whenever I need to – it’s a conversation starter that’s for sure. My tummy sits differently, which, visually, is hard to get used to. Pressures and pains have moved…new marks, bulges and scars appeared…scars that look like a small child has illustratively drawn them on me for Halloween in a dark red pen, scars that I am incredibly conscious of even if I’ve been told they are “cute”, “cool”, “show wisdom” and are “adorable cartoon scars on a really nice canvas” (I particularly like the last one). Oh, and I can’t lift anything heavier than a kettle…the most important and difficult thing to remember let alone tangibly calculate like a balancing act asking “is this heavier than a kettle?”
I never thought I’d be able to take a step back from work, from people, let alone embrace doing not very much…but I have and it’s been enlightening, clarifying, cleansing almost. My days have been spent living in jama land, in American Apparel thigh high cotton socks, flannel shirts, dress hoodies and a Japanese house coat…filled with so many white sheet king-sized bed hours and sofa days…watching TV and films galore sponsored by other people’s LOVEFiLM and Netflix accounts…reading, reading, reading where the Saturday Guardian has become a weekend ritual as has reading Vanity Fair and National Geographic Traveller magazines (a better quality of words)…to submerging myself in a huge amount of new music I’ve found that I can’t wait to share with you in another of the ‘My ears like to hear…’ blog posts…not forgetting the odd short wander on the streets around where I live.
I have many funny, awkward and inspiring stories I could tell about this entire ten-year Chapter of my life…from the gynaecologist who had returned from a ski trip just a few hours before my private appointment with an immaculate tan having broken his arm the previous day then having to do internal examinations of me with one hand, in sync with the hand of a nurse, a comedy that I literally experienced first-hand (no pun intended)…a rather delightful (sarcasm obviously) series of live bathroom performances for a medical research team, which, afterwards, they even gave me a copy of on DVD. Why on earth would you want that?!…the very attractive ward re-admissions Doctor who I vicariously flirted with for a day only for him to have to do a (ahem) procedure whereby he went bright red during and then we were too embarrassed to talk…the recovery nurse who I cannot thank enough (I actually sent her a thank you parcel as she was truly something) for her care and support as I came round from the surgery I’ve just had and for her chats about the Chinese mid-Autumn festival, Singapore and East Asia, East-West comparisons, and inspiration life chats about finding soulmates and belief in my next chapter…the anaesthesia team for having me in fits of hysterics about their potted Chinglish, Chinese language, Ming vase and Chinese Dynasty hidden knowledge just before I went under, literally crying tears of laughter…the surgeon who saw me when I was readmitted who took a break from his rounds to take a personal phone call and watch Jeremy Kyle on the ward TV (note TV which I could not put up with…banal at it’s best)…then there are the unforgettable characters on the wards, in the hospital, from patients to nurses that I could write about forever.
One thing that I cannot forget to write about is how this whole process has made me realise who my friends and “family” really are…there are people who have gone above and beyond to be there for me every single day, at every single step…and from great physical, global distances such as China, New York, Canada, Dubai and Germany. People who I’ve known for years, people who I barely knew at all before all this…that are now closer to me than ever before. People that are, too, going through huge medical and personal turmoil (2013 seems to be a year of it) that still manage to take that time. Then there are those who I’ve been surprised to not hear from at all, clarifying somethings in my mind, and definitely not worth wasting emotion on. My Mom has been my right hand woman, my official PA, dealing with me at my best and absolute worst, taking messages and replying to people, getting to know my “family”. Last week, I finally started to renegotiate my digital life but still very much at a distance as it is somewhat overwhelming, well life is right now. To those people, I want to say a big THANK YOU for your text and answer-phone messages, your calls, words, letters, cards, parcels, presents, gifts, company, thoughtfulness, laughter, support…thank you for simply just being you and for helping me be me, for chipping away at me during my recovery silence. You are the best medicine a girl can have.
Before I had my surgery, many people, friends and colleagues, said different things to me about what the surgery was going to do, how it was going to change me, what I was going to become – Rachel you will become bionic, organic, next level, transformed into the million dollar woman, new and improved, next generation, re-released restructured and reinforced, version 2.0. Are you ready world? I’m getting there in my mind…my body just needs to catch up and fingers crossed it will soon. Having time off from the world and being offline has given me a lot of time to think (if you couldn’t already tell), to reframe, refocus, to centre, something that I think everyone should do once in a while. A few final thoughts for Sunday and for recommendations for life before you go onto view the requisite photographic record of what’s been happening:
– Wear your seatbelt properly as a driver and passenger, and get others to wear it too. It could save your life in more ways than one;
– Remind yourself every single day how lucky you are for being able to do the simplest of day-to-day functions, lucky for the things you can do and the things you have in your life, as for many it’s not possible and we forget about this so easily;
– Never assume that because someone looks OK on the outside that they are OK on the inside. Take a few extra breaths to look and process, a few extra words to ask, a few extra minutes to listen;
– Remind those people, friends and “family”, near and far away, close and physically distant to you, that they are thought about, special, loved for who they are and that you are there for them, to support them no matter what. Send a text message, an email, a letter, pick up the phone, Skype today, now, this moment…and if you have something to tell someone, just tell them, as you might not get the opportunity to. People will always be the most important thing in my life;
– Find peace…with yourself, with things that have happened, with today. You have to, otherwise you can never move forward or see clearly.
“We all – adults and children, writers and reader – have an obligation to daydream. We have an obligation to imagine. It is easy to pretend that nobody can change anything, that we are in a world in which society is huge and the individual is less than nothing: an atom in a wall, a grain of rice in a rice field. But the truth is individuals change their world over and over, individuals make the future, and they do it by imagining that things can be different.” – Neil Gaiman
Perhaps I can inject a little humour here, or at least try. I actually read the majority of this post sitting in my car in the parking lot at The Dog House, waiting for my friend who was buying sourdough bread across the road. I thought I’d maybe seen the place in Breaking Bad but I couldn’t be sure: I guess now I know. What a bizarre coincidence.
I had no idea any of this was going on with you, and I’m sorry to hear what a massive trial it’s been. Abdominal surgery is the worst, and you’re right, we use these muscles for every single thing. I didn’t know this in advance and my recovery DVDs were early seasons of the Simpsons. Terrible choice. My stomach is still lopsided but I’ve got used to it. Best of luck with the continued recovery.
I came across this post from my deep excavation of google’s “ventral mesh rectopexy” results page; a key word search that I’ve become quite obsessive about. I’m awaiting my surgery date for the aforementioned, swapping your suspension for a sigmoid colon resection and enterocele blocking instead. I’m 28 and haven’t given much rhyme or reason to why this has happened either, I’ve also had to put a fledging attempt at an academic career or career in general on hold at the moment as well. I was quite moved to read about your experience, more so to read your recent posts and see that you are now living your life again. I’m already prepared with my friend’s netflix logins. x