Saturday, 2 August 2014

Top surgery 3: post-op

I had top surgery on Monday 21st July 2014. This is a record for me, and for anyone who would find an account of the process useful.

Recovery: post-op appointment
(Pre-op and opFirst 10 days)

My post-op appointment was on Thursday 31st July. Andrew Yelland certainly doesn't coddle his patients! He and a nurse (I forget her name, I'm afraid) ripped the dressings away none too gently, and there it was, my new chest, open to the air. 

Honestly, it was a bit of a shock. I'm a planner: I've read accounts of this procedure, and seen endless photosets of Mr Yelland's work (and other surgeons' too), documenting the process from surgery to the faintest of scars, and I thought I was prepared for how my chest would look. I don't think I was, really. The wounds looked just how I expected - a little smaller, if anything - and the nipples were as gooey and swollen and black/green/bloody as I'd seen everyone else's look. Nothing was markedly different from photos I've seen of the procedure, but somehow it was still shocking. I guess the tenderness of my skin played a part - having been completely under wraps for 10 days, I felt very exposed and vulnerable. I've felt that a little just when changing my binder - it's surprising how quickly I got used to being bound up full time. 

Mr Yelland commented that I was unusually swollen at the outer edges of my chest - where I had noticed myself in the couple of days prior to the appointment - and that the big bruise on the left hand side (which was hard to the touch) was also a concern. He told me to keep an eye on it, and asked that I come back to him in a month so he could monitor it. He took photos of my chest, then removed the staples from my nipples and took some more. He put some large plasters over the nipples and told me to take them off when I got home. He also told me that I should leave the binder off for the most part from now on, putting it on only when there's a chance of impact (driving, going on the tube) and leaving the wounds open to the air as much as possible (when lounging about at home).

I was really emotional after the consultation. I had trusted that the swelling was, if not entirely my imagination, then expected - normal - and would naturally reduce as my healing progressed. Andrew Yelland didn't exactly start back in horror at the sight, but he did frown quite a lot, and ask me to come back, and sign me off work (partially) for another month. He was as calm and cheerful as normal, however, so I'm not devastated or despondent - but in the back of my mind there's a worry that wasn't there before the wrappings came off. I guess that won't change until I see him again in four weeks' time.

I'll admit to having a little cry in the bathroom before the journey home, and another one when I got home and took the binder and nipple dressings off. It was partly pain and sensation, and partly emotion - relief at being out of the dressings, distress at the state of my chest, and a certain sense of anticlimax. I guess that, despite knowing better, I had built up the post-op appointment in my mind until it was much bigger/further along than it was: as silly as it sounds, I think I expected to be better. I knew that this surgery with this surgeon gives you an automatic fit note for two weeks, and I think I had believed that since ten days was nearly two weeks, I'd be basically back on my feet by then. 

I wasn't. I'm not now. I'm moving even more gingerly than I was before, and the first evening at home after being unwrapped (I got home at 8pm), the feeling of a loose t-shirt on my bare chest was so overwhelming it made me feel sick. I was on the verge of tears the whole time, and could hardly eat. I couldn't really talk to my family - I felt guilty about feeling bad, about my weakness, about my expectation that I would be better by now. It seems, in hindsight, foolishly unrealistic. I've rallied now, and am settling in for the long haul, and am trying to involve my partner and family again, having rather shut them out in my distress after the appointment. But I think it will be a longer journey than I realised.

Thursday, 31 July 2014

Top surgery 2: recovery

I had top surgery on Monday 21st July 2014. This is a record for me, and for anyone who would find an account of the process useful.

Recovery: first 10 days
(Pre-op and op)

I'm still alternating two binders; each morning I take the binder off, use baby wipes to freshen up, check that my dressings still look ok, and stretch out my shoulders a little. I take a few deep breaths (which I can't properly whilst wearing the binder) then line the fresh binder with absorbent lint and brace myself against the wall so my partner can wrap the binder round me as tightly as possible. 


I could do it myself, but when the nurse fitted the binder in hospital, she showed me both options - fastening in front, and fastening behind - and I found the latter vastly more comfortable. I'm sure I could fasten it myself behind my back, if I really tried, but I have a lovely partner who will do it for me, and there's no reason to risk stretching everything out and potentially slowing / harming the healing process if I don't have to. 

Donning the binder is about finding the right balance between being able to breathe and making sure everything is strapped down nice and tight, to prevent fluid build-up and make moving around during the day easier. It might sound counterintuitive, but the tighter the binder, the more comfortable I am (in terms of the wound sites themselves). The binder restricts movement, so the movements I do make are smaller and less painful. I wear my binder as tight as I can bear. Sometimes at night I will loosen it a touch, for comfort. 

My pain is almost always bearable. It's worst first thing in the morning and then from late afternoon onwards. I take 2 500mg paracetamol and 1 30mg codeine every 4 hours (ish). I usually take the first set at 9am, and the last at 9pm, and during the day I skip a codeine or two (the middle doses) so I can take one before I go to sleep and again if I need to during the night. Maximum codeine is 8 in 24 hours, so I've still got some to spare if I get desperate. I lowered my pain relief on the 3rd day, since I felt so well, and almost immediately regretted it, so now I'm back to the full dosage and will continue until it runs out. It's said that you should not 'grin and bear' pain during recovery from surgery, as that will probably make you more tense and slow the healing process. I knew that, but I still thought I knew better and started taking less pain relief too early. Don't do that!

Oh, I'm also taking arnica (2 'pillules' 3 times a day). My paperwork instructed that I do this 7 days before and after surgery. I'm still on the fence about it: I don't believe in homeopathic remedies, but this is prescribed by the hospital, so I guess I do believe in it enough to follow the instructions? If it's a placebo, well, the whole point of placebos is that they do in fact make a difference, and it can't hurt. 

I struggled to pee for a while after surgery - the nurse said it was due to a combination of the general anaesthetic and me being tense - but was going normally by the 2nd day. I'm still quite constipated, though, which is apparently a standard side effect of codeine.

As far as exercise goes, I have been diligently doing the physiotherapy that I was given at the Nuffield. The first time I did it (with the physiotherapist) it was difficult and painful, but the next time (2 days post-op) it was easier, and my range of movement was better, and it's been slowly improving ever since. Now I do it without thinking and it makes me feel really healthy. I guess I do it 6-10 times a day.

On the other hand, today I walked to the village (exactly half a mile) and back, and had to rest for the rest of the day. You don't realise how little you're doing until you try to do something! My advice would be, in trying to get a little exercise, take it very slowly and be prepared to stop a lot sooner than you think you should.

I have been sleeping upright. I'm not sure if this is recommended, but when I sleep flat, I am blissfully pain-free when I wake up, and then sitting up is agonising as the blood rushes back to my chest (this is my totally non-medical guess at what is going on). So I am choosing to sleep propped up, which is less comfortable overnight, but also less traumatic in the morning, and doesn't leave me desperate for my first dose of pain relief. I also try to stay mostly upright during the day (this involves sofas, armchairs and sunloungers). 

My appetite fluctuates a lot. On days 3 and 4 I barely wanted anything to eat, and sometimes I'm ravenous until I try to eat and then can't manage much. Most of the time my appetite is smaller than normal, but I drink as much water as I can (I'm terrible at drinking as much as I should) and eat lots of fruit and vegetables (which is basically my normal diet). Also, ice lollies, as it's been abysmally hot this week.

On day 8 I started to get some localised pain beneath my armpits, where the ends of the wounds are. I also noticed I was swollen above the top edge of my binder, at my armpits. The whole area was achey and tender. When this continued into day 9 I called Ginny (Andrew Yelland's secretary) to find out if I had anything to worry about. She asked me if I had noticed any visible changes through the dressings (I hadn't) and told me to loosen the binder, suggesting that as my swelling had gone down over time, I had probably been binding tighter and tighter and might have gone a bit too far. 

On day 9, incidentally, I met some friends at a local pub for dinner, and although I didn't feel up to walking there or back, I was pretty pain-free the entire time (although quite tired by the end). I feel like I'm getting there.

Coming up on day 10: post-op appointment with Mr Yelland.

Sunday, 27 July 2014

Top surgery 1: pre-op and op

I had top surgery on Monday 21st July 2014. This is a record for me, and for anyone who would find an account of the process useful.

Consultation, pre-op assessment and surgery

I had my surgery with Andrew Yelland at the Brighton Nuffield Health Centre. I met him on July 1st for my consultation and pre-op assessment. He was really nice and relaxed: chatty, informative, unfazed by questions and concerns. In fact, according to my mum (who attended the pre-op with me), he was a little too blasé - but my mum is a worrier and his casual attitude didn't worry me or put me off. He had a look at my chest and told me I'd need double incision (which I had already assumed) and showed me how it would be done. He drew pictures and took me through a list of facts, risks etc.

At my pre-op assessment I had my blood pressure taken, was weighed and measured, swabbed for MRSA, and told how to prepare myself for surgery: remove nail polish and jewellery, wash with a special sponge they gave me, don't wear deodorant  / moisturiser / makeup etc. The nurses were lovely. Oh, something I wasn't told in advance was that they'd need to take a urine sample. So save some up for that!

My admission letter told me that I'd be admitted at 7:15 on the morning of my surgery, but when I spoke to Ginny (Andrew Yelland's secretary) the week before, she told me I was last on the list for the day, so could actually check in at 11. That made for less of an early morning, but also meant that the 6 hours of nil-by-mouth occurred over a much less convenient time. I didn't have anything between 9pm on the 20th and 5pm on the 21st (when I came out of surgery). I was starving!

When I was admitted, I was immediately asked to choose my menu for the stay. It made me even hungrier, but at least I could look forward to my tea - pasta primavera and a cheeseboard. Then I was seen by a nurse (she had a student nurse with her as well) who took another set of "obs" as they called them (observations: blood pressure, pulse etc) and measured me for my sexy surgery stockings. She took me through a pile of questions about when I'd last eaten, if I had any allergies, had I washed, had I followed all my pre-op instructions, did I have my binders, etc, and then supplied me with a wristband with my details on it. 

After that, I changed into my gown and delightful paper knickers and stockings, and hung out until Andrew Yelland arrived to draw on my chest. Soon after, my anaesthetist (Martin Street) arrived to say hello, check again that I wasn't allergic to anything, and it wasn't long after that that two porters arrived to wheel me off down the corridor. Nothing makes you feel sillier than being wheeled down a corridor under a duvet on a hot day, when there's nothing wrong with you. 

I was fitted with a cannula and then given the anaesthetic, which felt exactly as the anaesthetist said it would: cold in my arm, then a strange taste in my mouth, then nothing. I was a bit disappointed I wasn't asked to count back from 10. I guess that's just in the movies.

When I came round I was pretty panicky. There was a mask on my face and I couldn't breathe very well - I was very cold and uncomfortable, and I think I was thrashing around a bit. I asked if I could sit up, which made me feel a bit better, and then they gave me a bunch of morphine, which helped me calm down pretty fast. The nurses there were very kind and attentive, giving me little sips of water and chatting gently about music and weather and the like. It seemed like no time at all before they wheeled me back to my room.

The time after that is a bit of a blur. I know I was pretty woozy for quite a few hours - my mum and partner were there and apparently I was quite incoherent and fell asleep a lot. I also told them about four times (allegedly) that I intended to have a pedicure when I was better. They suggested I skip dinner (which was to come round at 6) as it might make me sick, but I wasn't having that! They brought it as promised, and it was the most enormous portion of pasta I've ever seen, and I slowly ate about a third of it. It was the best meal. After that I was allowed a pot of tea, and I managed to not spill any of it on myself, which was amazing. During this time I had a lot of care and attention from various nurses who took more 'obs' and kept my temperature sensible (I was freezing, then too hot, and generally just a pain in the arse). I had an automatic blood pressure check every ten minutes or so, thinning out as time went on. 

My visitors left around 8:30, and I spent the evening listening to the Proms on the radio, slowly eating my way through the cheese and biscuits, reading my book (well, looking at my book) and watching something with Trevor Eve in it on ITV3. I was given some antibiotics at around 10pm, and some time after that I called a nurse (as I had been told) to help me get out of bed for the first time. I was dizzy but it was ok - totally failed to pee though. I tried to change into my own clothes for sleeping, but eventually decided that the gown was probably more comfortable. I had been told - and this surprised me - that I should stay fairly upright for the duration. It wasn't as uncomfortable as I thought - and it meant that I never strained myself trying to get out of bed or reach for things on my table. 

I fell asleep easily enough, and was woken at about 1:30 for pain relief and more obs - after that, I slept straight through until about 6:30, when I had more obs, pain relief and the final shot of antibiotics. Then breakfast at 8, followed by a revolving door of visitors: Andrew Yelland came to see me, told me it had gone well, and undid my binder - blessed relief! He had a look at my dressings, poked around a bit, and told me I could leave it open until the nurse came to fit my post-op binder. It was nice being able to breathe for a bit. The anaesthetist popped in, checked I was ok, and left again; a physiotherapist came and walked me through some exercises to do once I was home. The nurse who had admitted me came to fit my binder, give me my prescriptions and talk me through my post-op care. I wish I could remember her name, because she was particularly great - although absolutely everyone I met at the Nuffield was lovely and helpful and reassuring and friendly. 

I had a nurse carry my bag downstairs, and sat on the terrace with a glass of water, enjoying the sun, until my dad arrived to pick me up. The drive home was appalling. DO NOT ignore the advice to bring a pillow to protect your chest from the seatbelt. I had one, also a very comfortable seat and a very good and considerate driver, and I was still in quite a bit of pain (my journey took about 2 hours). I dozed most of the day when I got home. 

I want to flag up the benefits of using absorbent lint to line the rough edges of the binders (you can buy these from the Nuffield for £10, but they're cheaper from Sports Direct). If I wear the binder as tightly as I feel I should, the edges chafe painfully, especially around the top (I'm very broad-shouldered, so your mileage may vary). If I'd known to do this before the journey home, I would have been in far less pain that day!

Saturday, 29 March 2014

Review: Big Brother

I read We need to talk about Kevin when it was published, along with everybody else I saw on trains, beaches, and benches, at coffee shops, hospitals and dentists. I was fascinated by it, and unsure how I felt about it. My Auntie J asked us "So, what do you think? Was it the boy, or his mother?" She herself was entirely unsympathetic to the mother, and used some uncharacteristically unfeminist language to condemn her. But then, Auntie J was (is) a mother herself. Maybe it's more tempting, from that position, to believe that a mother's character can influence her child's one way or the other. Maybe it's even true; how would I know? (I mean, my mother is the best person in the world, and I'm ... me.) But I know that I never had the conviction that Auntie J did to damn Eva unreservedly. It was more complicated than that.

If you haven't seen the film with Tilda Swinton and Ezra Miller, you should. It's bleak and horrible and you won't want to see it again, but it's worth a watch. 

Anyway, the things I really loved about Kevin were the writing and the complexity. Something about Lionel Shriver's prose is deeply compelling, and I love to read even her books whose contrivances leave me cold (the story of The post-birthday world, for example, is complete nonsense, and I still enjoy reading it). But I was disappointed to learn that her most recent novel is called Big brother and centres around a woman whose brother Edison, once a "slim, hip pianist" turns up for a visit weighing roughly 386 pounds. To us Brits, that's 27.5 stone. 

Let me get this out of the way right now: I couldn't care less about all the handwringing regarding obesity epidemics and national averages and plane seats and fatties-cost-the-NHS-millions-of-pounds-a-year. Everyone has the right to be whatever weight they want, or whatever weight they happen to be, and in the UK, you additionally have as much right to be treated for any conditions arising from that as you do to be treated for sexual health, lung cancer, liver damage, gender confirmation, and a million other things. I have no patience for fatness-as-a-moral-failure narratives, nor for conniving arguments that try to make that statement without seeming to make it (see I'm only concerned for your health, I just want you to live a full life, I don't want people to be mean to you, wouldn't you rather have more choice in clothes, etc).

So that's why I was disappointed in Shriver's subject matter. The best thing about Shriver's novels is how deeply she examines complicated situations; how much nuance she reads into people and their lives. It's impossible to say that it's all Eva or all Kevin, or even how much blame should be assigned to Franklin. The novel twists and turns on itself with such dedication that you're constantly wrongfooted as a reader, and that kind of satisfying moral ambiguity is not something I want to see applied to (as the blurb says) "why we overeat". 

I'm going to spoil the entire plot of Big brother, including the twist at the end, so read on at your own risk.

The narrator, Pandora Halfdanarson, has grown up under the shadow of a famous father and a huge personality of a brother, but by the time we meet her, she is outranking both in personal and professional success. When Edison arrives for a visit having gained hundreds of pounds and lost friends, work, pride and possessions, she and her family struggle to ignore what they call "the elephant in the room". As he prepares to leave on a fictional jazz tour of Europe, she proposes that they get a house together for a year, where he will be put on a strict diet until he loses the weight. He succeeds, but when he realises that she will now go back to her family, he deliberately binges until he regains all the weight.

At this point it is revealed that the whole weight-loss story line has been Pandora's invention, and that Edison instead returned to New York, foundered further, gained more and more weight, and died at 49 of "complications of congestive heart failure". 

This feels like such a cop out. I'm not saying I was happy with the 'I love my bro so much I'm gonna force him to crash diet for his own good, bravely risking my own health and marriage in the process' story, but this 'and then I woke up and it was all a dream' thing? How has that been allowed in a successful writer's fourteenth novel? It's not that it isn't subject to similar complexities as Shriver's usual narratives - I would be far angrier if her 'dream' had ended successfully rather than with a reversion to eating-as-emotional-weapon - but it does have the effect of declawing everything about the preceding 200 pages. In those pages Pandora gets to know Edison, and herself, and other characters develop alongside them. Employing the silly 'it was all a dream' contrivance cheapens the development that has occurred throughout the novel, leaving you with a crushing sense of anticlimax. "Oh yeah, this didn't happen and could never have happened, and he's dead now anyway." It's just poor form. 

This book has all of Shriver's signatures: complicated, often unlikeable characters with unusual names and esoteric occupations; multi-faceted musings on place, identity and fame; an obsession with food and eating; a focus on familial ties and responsibility. The complexities are great, and her fascination with the strive for satisfaction, challenge and meaning in life is as compelling here as it is in Kevin. There's a really interesting discussion to be had about their portrayals of 'normal' life: ambition, achievement, stability, adventure - what 'normal' means and if it's worth it. But I feel so let down by the subject matter, and even more so by the cowardly ending.

Reading the notes at the back reveals that Shriver's older brother died in the same circumstances as Edison. So that pretty much explains why this novel feels more like a vehicle than fictional craft. It also gives us this gem from Shriver herself: 
I faced a range of obvious end points, none satisfying: a) Edison stays fat (static, not a story); b) Edison loses the weight and lives happily ever after (didn't sound like a Shriver novel to me); c) Edison loses the weight only to gain it all back again. Now, the latter structure would engender an appealing pathos. Yet as a matter of principle I could not publish a novel with the implicit message that in the long run it's impossible to lose weight, and thus it's pointless to even try.
So I chose d). 
I mean, this could take days to unpack, and I'm trying to practise brevity. (But I have to say this: a character getting really fat and then living their life is not "static". That is frankly insulting.) Shriver's anti-fat bias is summed up in the closing point: she thinks losing weight is so desirable that it would be morally wrong to publish a piece of fiction suggesting that losing weight is impossible. And that's disappointing from someone who wrestles with moral ambiguities the way that Shriver normally does. To be clear, I'm not advocating for a debate about the rights and wrongs of weight loss, fat-hatred, obesity scaremongering and the like. I think I've made my own views clear. But this moral high-handedness is not what I expected from Lionel Shriver, and it's not what I wanted.

Sunday, 23 March 2014

Machatunim

I had wanted to see S Bear Bergman speak at Bar Wotever, where I was sure he would be far queerer and less 'family friendly' than he would be at JW3, a Jewish community centre in North West London. But I was away for that event, so off to JW3 I went, along with another queer Jew of my acquaintance who was in a similar position, although more worried than I about drinking the tea of the occupation. (It was Oscars night at JW3, and my friend and I were surrounded by opulently dressed, exquisitely-groomed Jews who politely skimmed their eyes over us, the raggedy queers drinking g&t and peppermint tea in their midst. Apparently there was a real Oscar statue there, but I didn't see it.)

There were maybe 40 people in attendance, and I assumed that people had taken the write-up seriously, and brought their parents and grandparents to the event. It was nice, I thought. Bear's storytelling was marvellous, of course, and there was a lovely jumble of queerness, Jewishness and family in every story. 

It wasn't until the q&a at the end that things went awry. The very first question was "So ... you mentioned the word 'transsexual'. What ... er ... can you ... say more about that?" Bear answered that he is transsexual, and apologised (in a gloriously polite 'sorry not sorry' way) for not including the information as part of his introduction. Then he quipped that the line about his grandma asking him, as a youth, if he had a boyfriend yet, would have made a lot more sense with this information, and something about the amount of head-nodding in the room must have given the game away.

On going round the room, Bear discovered that there were 3 separate groups of people who had had no idea what they were coming to: about half the audience in total. At least one of the groups was a work outing. And in another group, one man explained their presence thusly: "Well, it was this or Wolf of Wall Street."

Another man, sitting right at the back, tried very hard to be polite as he explained that queer means homosexual, and that we don't really use the word here, as it's derogatory. (Outraged gestures no it doesn't! yes we bloody do! from the queers in attendance.)


Bear, to his credit, handled the whole thing tremendously. He was nothing but polite and sympathetic to the confused and they, for their part, were mostly respectful and seemed genuinely interested. There were some awkward questions ("So how long ago were you a woman?") but Bear handled them all with aplomb, and at the end, while the queer side of the audience huddled together to recuperate, it was wonderful to see that the other half of the audience had gathered around Bear. I was in the other half, of course, but I hope they were being nice to him. Maybe apologising a bit, or asking more questions, or just getting to know him.

On our side of the room, we were conducting shaky post-match analysis. I don't think I was alone in finding the q&a quite traumatic: for much of it I was near hysterical with a laughter which wasn't always happy, and others were acting similarly; I can't know their feelings, of course, but my companion confessed afterwards that she had felt the same. After things had calmed down, I found myself so shaky and short of breath that I recognised the sensation of an anxiety attack. Texting each other afterwards, S and I discussed the strange feeling of 'coming down' that we were both experiencing; S said her immediate response had been to want to get drunk, and that she knew she'd feel very tired soon. That's not how I processed it, but it certainly feels familiar! In the immediate aftermath, there was a feeling of euphoria amongst the leftover queers - we were laughing and talking, greeting old and new friends, bonding in a way that reflected the strange intimacy of what had just happened. I'm not overstating the post-traumatic feeling, for myself at least. It felt like we'd survived something together.

The leftover queers
And that brings me to machatunim. Properly, this Yiddish word means 'the parents of your child's spouse', but in his book Blood, marriage, wine and glitter, Bear expands it to refer to a kind of 'chosen family' which resonates particularly with his queerness: whilst queers might not have uncomplicated access to the traditional family framework that most people operate within, in its place we can access a different kind of family - a deliberate family. Bear's most recent book is all about this kind of family: mixed in with tales of his parents and grandparents and brother are stories about people tied to him not by blood but by love and kindness and choosing - wine and glitter, in fact. I've written before about the homo head nod, the sense of safety and support that can come out of being similarly marginalised, and this is what machatunim means to me. 

It means silent, fleeting recognition on the street, and heartfelt welcome in a hug. It means webs of connectivity across facebook and tumblr and gay bars and queer book readings. It means the shaky, euphoric release felt as we exchanged with one another broken fragments of the strange thing that we'd experienced. The ease with which we opened up. Becoming more than a handful of strangers in an anonymous room. Becoming, just for a moment, family.