life

Loving an alien, part 2

by Suw on July 2, 2014

Read Part 1. Also, please note that immigration processes vary from country to country, and in the UK they vary enormously over time as the Government thinks up new ways to torment immigrants. The below advice should not be thought of as comprehensive, nor always applicable to your personal situation, but is based on my experience of UK and US immigration processes, for whatever that’s worth. If in doubt, see an immigration lawyer.  

When I was 16, I probably would have laughed in your face if you’d said that I’d marry. And an American, to boot! You’re ‘avin’ a larf, mate. And even if I had believed you, it wouldn’t have done me any good without the advice I am about to give you.

If you have fallen in love with an alien, if an alien has fallen in love with you, if you’re even flirting with a foreigner or considering going on holiday or working abroad, then there are are a few little things you should do, right now, before they become necessary. This may seem silly, but trust me, if you ever need this information you’ll be very, very glad that you spent a little time preparing.

1. Make a list of everywhere you’ve ever lived

Literally, everywhere. Even those three month stints you spent at home in between years at university. In order to fill in some immigration forms, you need an unbroken record of everywhere you have ‘established a residence’ since you were 16, which for many people means ‘since forever’. It’s a tedious job, but start now and keep the document up to date and when you move house.

It took me hours on Google Maps and on the phone with my parents to reconstruct my residential history going back to, eventually, 1976. Luckily, I’d recently spent time on Google Maps finding the house I’d lived in back in Sydney, Australia, when I was 18, so that shaved about an hour off the process. But there was still a lot of “Do you have the address for that place with the bonkers landlord?”, though given that the majority of my landlords have been either bonkers or total assholes that didn’t narrow it down much. Remembering the walks home from the tube station helped too, but it was a tremendous stress at a time when I really didn’t need any more of that particular evil.

You’ll need the date (at least month and year) you moved in and moved out, and the full address.

2. Police certificates

Some visas require a police certificate for every country you’ve lived in for more than a year, no matter how long ago, and for any UK address you’ve lived in during the previous X years. It’s an easy process in the UK, but do not put it off once you get to that stage because it can take time, and the longer you put it off the more you delay your own visa.

If you have ever lived in another country for more than a year, start researching now how to get the appropriate document so that when the issue comes up you know what to do. The particulars of the process may change in the intervening years, but the basics won’t.

I only found out about the requirement for a police certificate for other countries late on in the visa process, and had I spent another three months in Australia, I would have had to get a certificate from them. That could have delayed my visa for months, which would really have piled on the stress.

3. Make a list of everywhere you’ve ever travelled

When Kevin had to do this, we spent a long time with his passports and calendar listing everywhere he’s been for the last ten years. That was relatively easy, if tedious, because an American travelling in Europe gets a stamp in their passport every time they enter a country, and usually when they leave too. (For some bizarre reason, the UK doesn’t do exit stamps.)

For me, it would have been a disaster if I wasn’t so zealous about putting things in my calendar, as a lot of my travel was within the EU, meaning that I don’t get any stamps in my passport at all. But with my calendar and my propensity for booking everything online and keeping electronic copies of tickets, I could draw up that list.

You’ll need the departure and return dates, plus city and country. Make a note of which flights are overnight – I tend to count duration in nights not days, which makes it easier to deal with nights spent in the air and the crossing of the date line (not that I’ve ever done that, mind!).

4. Check your vaccination record

Some countries require you to be vaccinated against specific diseases, so it’s a good idea to make sure that your medical records are up to date with your childhood jabs. You can get a print out of your vaccination history to give to the medical examiner.

You may need to get additional vaccinations in order to complete the immigration process: I had to have an MMR jab because I hadn’t had a mumps vaccination as a child (it didn’t exist then). As an adult you can get MMR free on the NHS, though I’ve heard that some GP surgeries are reluctant to give it. Don’t take no for an answer!

5. Check your medical records

Some countries require you to tell them your medical history, which sounds like a trivially easy thing right up until the point where you’re in the middle of the medical and being grilled about events that were so long ago that you’re a bit hazy on the details.

In the UK, you have the right to see your medical records and it should cost no more than £10. You are “entitled to receive a response no later than 40 days after your application is received and any relevant fee has been paid”, so start this application sooner rather than later. This is especially important if you have any history of mental illness, including depression, at all, because you could be asked quite detailed questions about what happened, when, and what medication you were given, if any. If you know exactly what is in your medical records, then you can be much more accurate in your replies to questions.

Be aware that, depending on the country’s requirements, if you have any history of mental illness, including depression, you may need to get a letter from your GP confirming that what you say is true. That can add a month or more on to the process, depending on how efficient your GP is. Again, do not delay talking to your GP if you run into this problem, as the sooner you ask them, the sooner your letter will get to the head of the queue.

At my GP’s, the process was that the GP writing the letter rang me up, asked for further information about when my brief period of depression was, read out what the records said (very, very little, as it turned out), and then wrote the letter. When it was ready I picked it up, read it through and had the opportunity to discuss it with the GP if I had wanted to, so they didn’t communicate directly with the embassy medical panel. This was a huge reassurance, because it was very stressful not knowing either what my medical record said (I didn’t check first) and not knowing what my GP would say.

6. Get your household bills in joint names, and keep them all

For Kevin’s Indefinite Leave to Remain in the UK we needed to prove that we had a legitimate relationship, not a marriage of convenience, and to do that the government wanted us to produce six utility bills in both our names from the previous two years. What wasn’t in the guidance was that they were expecting those bills to be evenly spread out over those two years. Our happened to come in three clusters, which they said wasn’t good enough.

As I said in my last post about immigration, their logic is just insane. Do they really believe that a couple would move in together, get joint bills then split up for 10 months before moving in together again to get more bills, then split up, and then do it all again? Seriously? On what planet does that happen? Especially as we had at that point been married a while. It’s just mindboggling that people would think like that.

But, we dealt with that bit of jobsworthing by adhering to the next rule, and it is a rule that you should live by no matter what sort of visa you are applying for, no matter what country:

7. Over-document

When the immigration official asked for more bills, Kevin whipped out a sheaf of papers about half an inch thick, and the objection to the timing of our bills magically evaporated. We had been advised to over-document, and it was advice we were happy that we followed.

In short, document everything, and keep everything. Get as many bills and other official proofs of your relationship as possible. Every time you get a relevant email, or fill in a form online, keep a print copy. Two copies. Make photocopies of all your official documents. If you have any phone conversations (although I have not spoken to any officials on the phone for my visa), make detailed notes including date and time of call.

It’s also a good idea to log every action you take, if only for your own peace of mind. Note when you submit forms, when you send emails, when you get documents through the post. The visa process takes ages, but it feels as if it takes aeons. It is good to be able to look at your log and realise that it was only last week that you submitted that form, not last month, and so the fact that you’ve not heard anything is not a bad sign.

Non-EU immigration is very, very hard work. If you can afford a specialise immigration lawyer, then that’s certainly a help, but many people can’t. The rhetoric of the media, especially in the UK, would have most people believe that all you need to do is turn up and bingo, it’s all good. But that’s not true. There are a lot of forms to fill, a lot of money to pay over, a lot of tedious information gathering and underneath it all the lurking suspicion that immigration officials can be capricious and that your application may fail for reasons entirely opaque to you.

If you are in the process of, or about start, any immigration process, then good luck. And if you’ve been through it, what do you wish you’d known before you started?

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Loving an alien, part 1

by Suw on June 19, 2014

There were many things that occupied my mind when I was 16, but thinking about the kind of man I might marry was not one of them. Revision for my O Levels was a pretty big thing in my life about then, as was thinking about what I’d do at university, and which of my Dad’s science fiction books I’d read next. I gave no thought to who I might marry, or even whether I might marry.

By my late 20s, I had started learning Welsh and had ‘decided’ that I would probably wind up marrying a Welshman, if only to be able to move to somewhere picturesque and spend my time speaking the the Language of Heaven. I failed quite spectacularly on that front, only eventually meeting Kevin once I’d given up not just on the whole Wales thing, but the whole marriage thing as well. I was convinced that my natural state was single, and that I was going to be ok with that.

When I met Kevin, I was smitten the very moment he walked through the door to the foyer at BBC Television Centre out in White City, despite not knowing who he was, or that he was the person about to interview me for the radio. And even though it was very obvious that he Wasn’t From Around These Parts, I never for one moment considered the implications of falling in love with an alien.

I mean, you don’t, do you? You can’t. You have no way of knowing what’s in store for you, because no one ever talks about the practicalities of immigration. But as soon as you fall in love with a foreigner, immigration policy becomes a major force in your life, one that might destroy your relationship, destroy your future, if you make even just one, tiny slip.

Lots of people talk as if they know all about immigration. They have opinions, and they spout them unchallenged by reality, because no one really wants to discus the nitty gritty of immigration, they just want to throw a few soundbites around so they can ingratiate themselves with an audience who know even less.

Try falling in love with one of those dirty, rotten foreigners, one of those selfish people who come over to our country, stealing our jobs, shagging our women (or men) and spreading love and happiness in their wake… oh.

Loving an alien means putting your life in the hands of politicians. It means wading through pages and pages of barely comprehensible legalese. It means hoping that the rules don’t change whilst you’re in the process of legitimising your love’s presence in this country not of their birth. It means being given advice by people who only two years ago had a totally different experience because everything has changed in the intervening time. It’s knowing that if you hadn’t gotten lucky and applied when you did, the new rules would see your love thrown out on their ear because of an arbitrary decision made by someone with no grip on reality. It means wondering, especially in the early days of your relationships, whether your love might be tested to destruction by bureaucracy.

The worst part is the feeling of powerlessness that often comes upon an immigrant and their partner. The fact that there you are, standing in front of an immigration official in Liverpool, and they are complaining that the utility bills you have given them to prove that you’re in a legitimate relationship aren’t evenly spread out, one every three months, over the previous two years, despite the fact that nowhere in their directions do they explain that ‘requirement’ (which you suspect they’ve made up on the spot). As you wait for this anonymous stranger to make their decision as to whether your love can stay, you hear a couple at the counter next to you being told that no, his wife cannot stay because he does not earn enough money, even though this financial requirement is so new the media still think it’s just a suggestion.

I was sitting in a taxi the other day talking to the Bengali driver and explaining my current immigration situation. Whilst we were chatting, I explained how long it had taken Kevin to get his citizenship here, how torturous it was, how touch-and-go at times. He was shocked.

But, you’re married! he said.

Doesn’t count for anything here, I replied. The bureaucrats are so divorced from reality that they seriously believe that my husband and I might get married, move in together, get some bills in both our names, then move out again, then move in again a year later for another batch of bills, then move out again, faking it all the time just for him to get a visa. Seriously, anyone who believes people behave like that is capable of believing anything, and they will choose to believe the worst.

!!! he said.

Seriously, I said.

But you said he’s American, he said. I thought people like that just, well, walked in?

I laughed, a sad, frustrated laugh.

My Bengali taxi driver had internalised the media’s and politician’s lies about who immigrants are, and how easy it is for different types of immigrant to arrive and stay in the UK. His assumption was that, because we were white, we could just do what we wanted to. For him, it was an eye opener to discover that we did not, in fact, have it easy, we did not get special treatment.

Indeed, the UK government has so much shit to give that they like to spread it around as much as they possibly can. No favouritism here (except for the EU, but that’s only under protest – don’t believe they wouldn’t throw out all European immigrants if they could). My Bengali taxi driver was sympathetic, if surprised, and I felt a momentary bond with someone whose life has been and will be very, very different to mine.

But what about the times when Kevin has talked to people in America about how long it has taken to get my US visa, only to have them say something like, Why don’t you just smuggle her in illegally, ha ha ha. Or, my favourite: Those Mexicans come here illegally, so why can’t she?

Because nothing says ‘love’ so much as selling your wife’s safety to human traffickers and risking not only her physical and emotional wellbeing, but also any future you might have had together in America. But oh, it’s so funny to think of a Western, white woman being an illegal immigrant when we all know those people are nasty, brutish and brown.

These people suggesting that illegal immigration is a sensible replacement for the formal immigration process are just idiots who’ve never given a moment’s thought to how they would like to be treated if they had married a foreigner. They make the assumption that illegal immigration is easy, but they also seem to think that it’s in some way fun, that it’s a choice people make as simply and easily as you might choose to have a cup of coffee or an ice cream. They have no comprehension of the risks and danger involved, so they make weak jokes as a way to avoid having to think about immigration in human terms.

The problem is that there is no credible civil discourse on immigration, no way for people to learn about the realities of immigration: the limitations, the tedium, the risks inherent even in the official process, the fear of getting it wrong, the expense. The nonsense that the media dredges up comes from the sewers of their imagination bears no resemblance to reality.

People who haven’t been through an immigration process tend not to know the least thing about how it works. They have no idea even of what the rules are, particularly with regard to whether immigrants can claim benefits (hint: EU citizens, refugees and asylum seekers can, everyone else can’t). This means that they cannot spot the hyperbole, the lies, and the misrepresentation because they simply don’t have a reliable understanding of reality with which to compare the rubbish published by so-called news outlets.

This ignorance of the mechanisms of immigration allows prejudice and misinformation to flourish. Prejudice and misinformation causes public outrage, which then shapes the political agenda. Politicians and civil servants then use the outrage to shape public policy to meet their ideological desires, or to try to win votes from an increasingly reactionary and ill-informed electorate.

And caught up in the middle of all this are couples whose only crime has been to fall in love, and families who just want to be together.

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For those of you who know Kevin or me well, it will come as no surprise to hear that we are finally moving to the USA: Kevin yesterday started his new job as Executive Editor of the Sheboygan Press and the Manitowoc Herald Times Reporter, both a part of Gannett. I am still in the UK, and will follow when I have my visa, probably in May or June (though it’s anyone’s guess, really!).

There’s a lot to write about regarding this move, but I suspect that the biggest question on most of my friends’ lips will be, “But what will you do for work, Suw?” The answer to that is that I will be taking my social media consulting across the Pond, still focused on media and publishing. Sheboygan is more well known for its bratwurst than its international publishing companies, but it’s only a couple of hours drive from Chicago and just over two hours flight from New York. I’ve plenty of experience working remotely, of course, and will also be interested to see what the local market is like in towns like Milwaukee.

Although Kevin and I started my visa application in September last year, it is a drawn out process, as you can imagine. It’s impossible to know exactly how long it will take before I get the green light to move, but it’s not likely to happen much before May. In the meantime, I’ll be trying to cram in as much work in the UK as possible, so if you’ve ever thought about getting me in, email me now! I’ve just revamped my website to give more details of the strategy workshops I have developed and the bespoke social technology consulting that I do.

If you’re an American publisher interested in social media, then I’ll be at the London Book Fair in April, so get in touch and we’ll find a time to meet. I’m eager to start conversations soon for engagements during the summer.

As for Ada Lovelace Day, that will continue as normal. This year, it is hosted by the Ri, who are already doing a fantastic job of taking care of us, and our producer, Helen Arney, will continue her great work putting the event line-up together. Today I have a meeting for next year’s event, which will also be hosted in London. I will be back for both, and the centre of gravity for Ada Lovelace Day will remain in London for the next two years, not least because it gives me a good excuse to come back and visit friends and family!

I am very excited indeed about this move. I’ve visited Sheboygan, and it’s a lovely lakeside town with a proper British pub and a picturesque downtown. There are some great outdoors opportunities, and finally the chance for us to own our own house, something quite impossible in Woking. And I hope to have a bit more time to write and to make and to enjoy exploring my new country. Grabbity and Sir Izacat Mewton will of course be coming with us, and I can’t wait to see them exploring their new house and enjoying a bit more space. So, stay tuned. I’ve a lot of pent-up blogging that needs to come out!

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2014: A year of massive change?

by Suw on January 1, 2014

I have high hopes for this year. Last year, 2013, was a weird year. After a great first half, the second half became one giant effort to just cope with everything that was going on. I had my oophorectomy, but lost four work leads because I was off recuperating. As a freelance, that’s really frustrating, because every lead is valuable. Kevin’s job evaporated into the thin air of small organisation politics and so he rejoined me in consulting whilst carrying out a job search that was longer than either of us had hoped for or anticipated.

Ada Lovelace Day ate my brain. Seriously, it was so much more work this year, not least because I decided to put together an anthology of writing about women in STEM, which I called A Passion for Science: Stories of Discovery and Invention. I’m very glad that I did – I got some just gorgeous writing in and the book has been very well received indeed. I’m looking forward to starting on organising a Kickstarter project to get a physical copy printed up. So that’s something to get started on when I’m back in the office properly next week. 

But most frustratingly of all, last year started off really well on the writing front but then it just got lost in the morass of ALD organisation. By the time that was over I was so behind with actual paying work that I spent every waking moment either working or so knackered that I couldn’t do much more than crochet. 

So this year, I’m taking my writing by the jugular and shaking it up. To that end I’m setting myself some goals: 

Write morning pages every day
I wrote recently on Forbes about writing to discard, and how as writers we really need to practice in the safety of our own notebooks. Self-publishing has a nasty habit of making you feel that everything you write is and must be for publication, but that takes away our permission to be a bit shit, to experiment and to mess up. Morning pages are an idea from The Artist’s Way that allow you to write without judgement, write without your inner editor looking over your shoulder and, hopefully, free up those creative cogs. So, starting today, I shall write at least a page of whatever comes to mind every day. 

Blog at least once a week
In both 2013 and 2012, I wrote just 28 times on this blog. In 2011 it was no better with just 29 posts, and in 2010, it was 38. In 2004, I was doing more than that in one month. So, I’m going to try to up my output to, erm, 52 posts in 2014. That’s one a week. You’re going to have to hold me to it, though, because blogging is always the first against the wall when the revolution comes, or when I get busy. And this year, well, it might get busy. 

Publish fiction at least once a month
Last year started well for me as regards writing. I got Queen of the May done and published, wrote The Lacemaker, jotted down lots of ideas, got two new stories drafted, and then it all went to hell in a handcart. So this year, I’m going to promise to publish at least one thing each month. It may be a short story, a piece of flash fiction, a chapter from something longer, or even just a vignette, but something will get published. In fact, I may even join Patreon, a micro-patronage site, to provide some motivation. I’d love to know what you think of that idea – is it a good one? Or just a distraction? 

Restart my author’s notebook
A while back, I started carrying round a small notebook with me, in which I jotted down ideas. It really does help to get the ideas flowing, as the more you write them down, the more they come to you. I need to get back into doing that, and not just shoving stuff aside when I think of it “to remember later”, because I invariably forget. 

So, those are my plans. This year has some sharks lurking in the shallows, sharks that I know are there and which could easily eat my plans for lunch, but I hope to be able to make friends with them using age old shark whispering techniques so that they don’t leave more than the occasional bite mark behind. 

Wish me luck, and keep me honest on Twitter

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Final oophorectomy post

by Suw on December 2, 2013

It’s been six months now since I had my left-hand ovary and fallopian tube removed, along with a shit-ton of endometriosis, and there’s one final, very short update that I wanted to do for any other women who are going through this process. Though, as usual, I must note that this is just my experience and not medical advice. 

I had my op on 3 June and rather naively assumed it would be like the cystectomy that I had in August 2012 and that after a couple of weeks it would be like nothing had ever happened. Well, not quite. After eight weeks, I was feeling mostly back to normal, but there was an ongoing ache that was not quite enough to complain about, but enough to be really annoying. I was starting to get a bit concerned as I came up to my three month final check-up. My wounds had all healed, but I could still feel this dull ache. 

I had a bit of a look online to see what the average healing time is for this kind of surgery, but it’s not the sort of information that seems to be out there. There’s a lot of basic medical information, and there are fora where you can talk to other women who’ve experienced cysts or had oophorectomies*, but little useful experiential info. Anyway, I decided to bring up the continual ache at my final consultation with the endometriosis nurse and find out what was going on. 

About a week before my final appointment, however, after a relatively relaxed session at the gym, I noticed that the ache had dissipated, and it has never come back. I asked the endometriosis nurse about it anyway, just to see if it was normal, and it absolutely is. Apparently, after that amount of surgery it’s common for it to takes three months for all the little dull aches you get to heal up and go away, although often she said that too often women are referred to her for their final check-up after only two months, and that they are frequently in the same boat I was in. 

Now, six months later, I’m completely back to normal. It’s almost as if I’d never had surgery. My remaining ovary has mostly picked up the slack, although my periods are a little erratic and still really rather painful – I did have to get more of the good painkillers from my GP – but they are getting better as time goes on. All the spotting before and after that I was having prior to the op has stopped, so I’m back to a relatively compact monthly experience marred only by the searing agony. Heh, I jest. It’s merely agony. 

After my final check-up, I was discharged from hospital care. I have to say that the staff at Ashford Hospital in Middlesex were absolutely lovely. I received incredibly good care there, and they were all fantastic at communicating what was going on. I really couldn’t have asked for better, and I appreciate the hard work of all the staff there. Happily, I was called and asked for my opinions on my experience, so was able to give them the excellent feedback they deserved. 

 

* I do feel the need to say that there was a fair bit of content on the ovarian cyst/oophorectomy fora that I found deeply disturbing, not least of which were posts from women who felt that they were worthless now that they had lost one or both ovaries. It is so, so sad that women feel that their value is defined by their organ count, rather than who they are and what they do. That really broke my heart. I can understand women who’ve lost both ovaries being upset about not being able to have a family, but to devalue oneself because of even just losing one ovary is a far greater tragedy.

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Eight weeks later

by Suw on July 30, 2013

Eight weeks ago I had my partial oophorectomy, so I thought it was worth writing a little update. Obviously my story is just my story, it’s not medical advice or anything. I write it because there seem to be so few first person accounts of an op like this online, and it might prove reassuring to someone or helpful in some way. 

The first two weeks after my op went pretty much as expected. I napped a lot, watched a lot of tennis, and spent a lot of time curled up with two very snuggly kitties. The pain was manageable with the painkillers I’d been given, so long as I didn’t let the cats sit on me in the wrong place. By the second Sunday, almost two weeks to the day after the op, I was starting to feel as if I was back to normal. That Monday was my first day back at work, though I intended to take it easy. 

As it happens, that first week “back at work” turned out to be anything but easy. The Monday, I didn’t do too badly at getting work done, but did need two naps. That Tuesday morning I had a meeting in London at which I at least managed to look alert, even if I wasn’t entirely feeling it. That afternoon, though, Mother Nature visited the seventh level of hell upon me, also known as menstruation. 

It really was hideously painful and I was grateful that I still had some of the powerful painkillers left over from the ones that the hospital gave me. The pain was easily equivalent to that I’d felt directly after the op, and I felt rather as if the past fortnight hadn’t happened. That week was basically a complete wash – I had no energy, spent a lot of time back in bed or sitting on the sofa, and eventually decided to just let it go and let myself recover.

I could have done without needing to take that extra week off, not least because two work leads that had come in either just before or on the day of my operation evaporated because people couldn’t wait for me to recover. That’s one of the biggest downsides of being self-employed and needing to take time off for whatever reason – if you miss an opportunity, it won’t come round again. (And if you want to hire me for anything social media related, now’s a good time to get in touch!)

By the third Monday, though, I was feeling much better. My wounds, which were very small, had healed nicely and the stitches were dissolving. I had made the mistake of buying sterile dressings and micropore tape to cover my wounds whilst they healed, just to stop my clothes from rubbing at them more than anything. Unfortunately it turned out that I was allergic to the adhesive, even though it said it was hypoallergenic, and my skin itched like fury for about a fortnight, sloughing off like I was sunburnt. 

I started back at the gym in week 6, though I am still staying away from any exercises that focus on the abs as I still get low-level aches every now and again. It’s not clear to me what causes my ex-ovary to give me shit periodically, but it does. It feels a bit, sometimes, as if I have a phantom ovary, that my body thinks that it’s still there and still very cross about being mucked about. Those aches are fading over time and I presume that at some point they’ll just go away altogether, but in the meantime they serve to remind me not to overdo it. I just hope that I don’t end up with a weather ovary that aches when it gets wet and cold!

Surprisingly, I noticed almost immediately after the op that my ongoing lower back pain had just vanished. I’ve had back problems all my life, and over the last few years I had had significant pains in my lower back. I had put it down to not being fit enough, to having tight hamstrings that were aggravating muscles in my lumbar spine. In the few months prior to the op, the pain had become really quite intense. Every day I would wake up in agony which would last an hour or so, until I had moved around for a bit, and which would then come back in the evening as I got tired. 

That pain has now gone, completely. It turns out that lower back pain, even pain reaching down into the top of the legs, is a symptom of endometriosis. I am more than happy to swap that daily agony for a bit of an occasional ache that’s annoying but doesn’t even need painkillers. 

Having everything done laparoscopically is deceptive, though. You walk away with these tiny little cuts that heal really nicely and you think that not much has happened. In actual fact, the surgery was really quite a lot more serious than I had imagined it would be and it was hard sometimes to remember that and adjust my expectations accordingly. 

I’ve been through my second period post op, and although it was more painful than usual it wasn’t a patch on that first one. And it’s nice to know that, as predicted, my remaining ovary is more than capable of picking up the slack. There’s really very little, day to day, to remind me that I’m running on one ovary, except the occasional tweak as scar tissue complains a bit. Oh, that and the fact that for about three or four weeks after I stopped taking painkillers I was a really cheap drunk! I seem to be back to normal now, though, which is a relief. 

My check up is late September and hopefully then I’ll find out what the long term prognosis is for my endometriosis. They couldn’t remove all of it – there’s still some left inside my right ovary – but I don’t know how fast it grows or how long it took me to develop an abdomen full of the damn stuff. But I’m certainly happy that I had the op when I did, no matter the cost to this summer’s work schedule. 

Finally, I need to say a huge thank you to Kevin, who really has been a wonderful husband throughout, looking after me with incredibly patience and tenderness, and a willingness to get me another cup of tea every half hour or so. It would have been a much harder slog to get better without him. 

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Left at the lights

by Suw on June 23, 2013

Woodstock SquareSometimes, just when you think you’ve got everything nailed, when your plans are coming along nicely and all the pieces of the jigsaw are slotting neatly into place, something comes along and blows everything out of the water.

For some years now, Kevin and I have been plotting our move to the US. A few years ago, we both applied for various journalism fellowships with ideas we thought were really strong, but we didn’t make the final cut. In the following years, we talked a lot about where we might eventually move, even though we knew by then that Kevin had to get citizenship here in the UK first, so that we would be free to come and go. But without something to guide us in choosing a place to live, like perhaps a job, it was hard to imagine moving.

Kevin’s from west of Chicago and last year we realised that we really loved the area where he grew up, and that it ticked all of our boxes: it has an international airport, we both have friends in the area, the countryside is very picturesque, and – this might just be me, but – the area isn’t seismically active or prone to extreme weather events. (I think it was Scott Adams who said that he didn’t want to live in a place where his cause of death might be “went outside”.)

A friend of mine familiar with the upheaval of moving from the US to the northern states of America advised me some years ago to make sure that I visited in the winter, as winter in the Midwest is in a whole different league to winter in the UK. Kev and I did that properly in January when we went out to his parents’ place and enjoyed -21C temperatures where your breath freezes in your nose with an odd sort of crinkly feeling. (Two days later it was 16C and frozen ground was steaming – go figure.) One does need the right clothes to cope with such cold, but it certainly didn’t put me off.

We fell in love with a town called Woodstock, where Groundhog Day was filmed. The town square has barely changed in 20 years, so if you’ve seen the film you’ve seen Woodstock pretty much as it still is. It’s a gorgeous town with some beautiful Victorian houses and a walkable ‘downtown’ area with real character, not to mention an opera house, cinema, arts centre, and some lovely restaurants and even a pub that is more like a proper British pub than anything I’ve ever seen in the US. Woodstock is 1.5 hours from Chicago on the train, so it would be easy for me to get in to visit the Chicago Centre for Book and Paper Arts, were I would be able to do courses, volunteer and get studio time. Kevin had a job that was geographically independent, so we would be able to quite simply pick up our lives and transplant them to this wonderful little town without too much of a hitch.

We found a lovely house in January, a 1940s place with a lot of room and a lot of potential. We put an offer in and signed a contract. Unfortunately, the house survey came back with a laundry list of things wrong, including a gas leak, dangerous electrics and plumbing that was ‘at the end of its useful life’. Oh, and the strong possibility of asbestos in the roof. And squirrels in the garage. And it’d need a new furnace. Minor points. We pulled out of the sale.

We returned in May, found another gorgeous house, put another offer in, but this time, the vendors weren’t quite ready to sell and fell off the face of the earth. Negotiations over price didn’t even get off the ground and, although we were disappointed, we knew there were other houses in the town that were just as fantastic. And oh my word, the houses! We could get a three or four bedroom house, walkable to the town centre, with large basements and multiple bathrooms for £100k – £120k. And if we wanted to go for a foreclosure, houses were going for £40k – £50k – the very definition of affordable, and in stark contrast to the south east of England.

In Woodstock, we’d be able to afford the kind of house we’d always wanted, in the kind of community we’d always dreamed of living in. We’d be near Kevin’s parents, and the train from Chicago to his brothers’ town takes 22 hours and is a wonderful journey. Poor Kevin left the US in 2005, expecting to be in the UK for a year. He certainly didn’t expect to meet the woman who would become his wife and end up becoming a British citizen. Rather, he put all of his stuff in to a climate controlled lock-up in Maryland with the expectation of being back to pick it up within 12 months. He has been able to check on it just once in the last eight  years.

We dreamed of him being reunited with his stuff, and me getting all my stuff out of my parents’ loft and, eventually our stuffs would meet, fall in love just like we did, and have little stufflings. Our books would nestle next to one another on the bookshelves and produce pamphlets. Our audio cassettes would find solace in one another’s spools and have tangles together. His junk and my junk would become our junk.

It turns out that it’s lucky we didn’t quite get our house bought. It turns out that we may well be hanging around Woking for a while longer. Any move to the US relies upon Kevin having a job, rather than freelancing, as without one my immigration paperwork becomes a bit more awkward. And any move to Woodstock requires him having a geographically independent job, a rare thing these days, even with the internet and remote working.

Last week, Kevin’s job got redefined out of existence. So did all our plans, and our dreams of moving to Woodstock (unless by some large miracle, he gets a job in the outer suburbs of Chicago, which I think we both know is unlikely). Pffut goes my plan to set up a nice little book binding studio in my basement, and my plans to transition my consulting business to the US market.

We didn’t talk much publicly about all these things were were hoping to do. Close friends and family knew what we were up to, but it seemed premature to talk about it openly, even when we were getting so very, very close to making it all a reality. So I now find myself in the odd position of grieving for a plan that I had become emotionally very attached to, but having the destruction of that plan come as a complete surprise to most people I mention it to. It’s strange, this feeling, this wistfulness for a future that will now not come to pass, this death of a dream we’d held on to so tightly over the last few years. We came so close, but it now feels so far away.

We’ll roll with the punches, of course. Kevin’s got two months to find a new job and already has applications in. If we’re going to stay here, we might try to buy, but the houses we can afford are mean and small and cramped and not very pretty and don’t have a basement I can convert into a studio. I’m trying to ramp up my consulting, which means lots of meetings (do get in touch if you’re interested in being one of those meetings!) and hopefully now that my op is done and I’m mostly recovered, I can get a lot more work done.

I’m also going to focus on ramping up my writing, which means ditching the idea of doing a Kickstarter project for Queen of the May and, instead, releasing it as an ebook and cracking on with the next project. Kickstarter projects are fun and great at coalescing a community around a book, but they are also fickle and time-consuming, and time I am short of right now. It’s more important that I write more than spend time making books, sad though that makes me.

We’ll come out on top, without doubt, because we’ll make the best out of how things turn out. That might sound horribly clichéd, but what other choice is there but to carry on searching the gold buried in all the muck? We won’t give up on the dream of one day moving to the US, and there is a possibility that Kevin’s dream job might even come up somewhere across the Pond, but the probability that it would be within spitting distance of Woodstock is slim to nonexistent.

So for now, I must cultivate a zen-like calm. I am a leaf, being blown on the wind and the fates will take me whither they will. I must let my dreams of Woodstock fade, to be replaced one day by other dreams of other towns and other Groundhog Days. Meantime, I mourn the passing of our oh so well laid plan.

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Last Monday, at the hideous hour of 7.30am, I went into Ashford (Surrey) Hospital to have my partial oophorectomy, the removal of my left-hand ovary and the 8cm chocolate cyst that was attached to it and still growing.

The staff at Ashford were lovely (once I found the right department!). I was rapidly seen by the anaesthetist, the staff nurse and then the consultant, and then whisked off as the first patient of the day. I’m not sure how long the operation was, but I have a feeling I went to theatre about 9.30am, and when Kevin rang at find out how I was doing at 10.30am they said I was still in, and I didn’t come round till something like 12 noon, so it could easily have been a couple of hours.

If you want the full description, from my notes, I had:

Left salpingoophorectomy and bilateral ureterolysis, resection of endometriosis and both uterosacral ligaments.

salpingoophorectomy is when they remove the Fallopian tube along with the ovary. A ureterolysis is “exposing the ureter in order to free it from external pressure or adhesions or to avoid injury to it during pelvic surgery”. And a resection is the “surgical removal of all or part of an organ, tissue, or structure.” The uterosacral ligaments are part of the uterus, “fibrous tissue and non-striped muscular fibers which are attached to the front of the sacrum and constitute the uterosacral ligaments.”

(I’m learning as much about this as you are at this point!)

The reason that the operation took so long was that they found a lot more endometriosis than anticipated. Not only did my left ovary have an endometrioma (cyst containing endometrial tissue, aka chocolate cyst), it was also adherent to the pelvic side wall (PSW). There was endometriosis on both the right and left PSW as well as under the right ovary, which was also stuck to the PSW. Both ureters were also “closely involved” with endometriosis. I suspect that doesn’t mean that they’ve been having romantic trysts and long, late-night telephone calls.

So that meant not only removing the ovary, Fallopian tube and cyst, but separating my ureters and right-hand ovary from the endometriosis and removing as much of the endometriosis as possible. I’ll learn more about the ramifications of this when I have my follow-up appointment in three months.

Interestingly, reading up on endometriosis again, one key symptom that I have that I hadn’t realised was related was lower back pain. The last two months especially have been hell on toast for pain in my lower back, and I had assumed it was because I had lost muscle tone due to doing less intensive workouts at the gym, and possibly also inadequate stretching. I now suspect that it was directly related to the endometriosis. Of the other types of pain that one can experience (some of which I had last year), I’ve thankfully not had any, so if this is restricted to just back pain going forward, well, I’ve had back problems my whole life so there’s nothing new there, and pain can be managed.

The last week has been spent napping, watching tennis, and occasionally checking Twitter and my email to make sure that nothing exciting is happening. My three small wounds are healing nicely, though it’s hard to explain to the cats that they can sit on my legs, or next to me, but mustn’t poke me in the stomach with their paws!

I now have an enormous bellybutton – the first incision is made through the bellybutton, then they inflate you with CO2 so that they can get a better view of proceedings. I left hospital blown up like the Hindenburg, though thankfully less flammable. The gas slowly dissipated, mostly through farts, I think, and I’m now back to my normal size, ignoring inflation due to chocolate.

I had hoped to be back at work, just part time, today, but a bad night’s sleep means I’m probably only good for two blog posts and then it’ll be more tennis and possibly some crochet. I’ve blocked out two weeks for recovery, but it will take as long as it takes. This morning I was reminded that it’s not just the external incisions that have to heal, but all the internal ones too. No picking things up for me for a while longer!

Kevin has been, yet again, fantastic in looking after me, for which I am incredibly grateful! I’m also very grateful to our friend Terry who drove us to and from the hospital, taking us just half an hour each way instead of the two hours that public transport demanded. (That’ll make the follow up appointment fun!)

And finally, I cannot emphasise enough just how fantastic the staff at Ashford were. Everyone was friendly, informative and helpful, especially when I was in recovery and at my most woozy. The kindness of the nurses was outstanding, and I was delighted when they called to see how I was doing the day after so that I could tell them just how brilliant they were.

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Bye bye ovary, ovary bye bye

by Suw on April 19, 2013

As regular readers will know, I’ve had two ovarian cysts over the last year. The first one was removed August 2012 but within five months a second one had grown on the left ovary again. The cysts are endometriomas, which means that a little bit of uterine lining has made its way into my ovary and started filling a cyst with blood.

I finally had my appointment with my new consultant this week and learnt some new information about my cyst. Apparently the last cyst, which I thought had just been drained, had actually been mostly removed although it burst during the procedure and thus complete removal wasn’t possible. The new cyst hasn’t grown much since the last ultrasound four months ago and is 7.2 x 5.5cm in size. That’s a fair bit smaller than my first cyst, which was 8.0 x 8.5 x 9.5cm in size when diagnosed two months before removal.

The smaller size of the cyst probably explains why it has not given me as much trouble on a day-to-day basis as the first one did. Although it’s sometimes uncomfortable, particularly when I lie on my front or when a cat sits on me with paws in the wrong place, it’s rarely painful. I’m most grateful for that, as it means that I’m not needing the painkillers I required last year which made me so fuzzy-headed.

So my choices are:

  1. Wait and see. Not really my favourite option.
  2. Have another cystectomy. The normal risk of recurrence is 10%, but given that I’ve already had one recurrence it seems likely that for me that risk might be higher. Can’t say that I’m overly impressed with this option either.
  3. Partial oophorectomy. Rather than just remove the cyst they will remove my lefthand ovary as well. This will prevent recurrence. There’s no reason to believe that my righthand ovary will start producing cysts and it should be capable of picking up the slack with regard to hormone production.

So, partial oophorectomy it is, then. I should get an appointment within the next eight weeks and it should again be an outpatient appointment, done and dusted in one day.

I was expecting this outcome, though it was still quite odd when it became clear that this was the best option. For a moment on Wednesday I felt that there was something almost symbolic about it, losing an ovary, that I’ll always know that there’s a tiny almond-sized bit of me missing. But it’s really no more symbolic than losing a wisdom tooth or four, or an appendix or tonsils.

I’m not fussed about fertility. Kevin and I jointly decided years ago that children weren’t our thing and that we’d prefer not to have them. Some people find that an odd decision, but it’s very definitely the right one for us. Indeed, the rightness of that decision was strongly reinforced shortly after we got married when we had bit of a pregnancy scare – when the test came up negative we both heaved a sigh of relief, rather than disappointment.

I’m looking forward to being on the other side of the operation. Although the staff last time were fantastic and I’m not worried about the op, it’ll be nice to have it out of the way. I will, of course, keep the blog updated as things progress.

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Ovarian Cyst Mark 2

by Suw on January 20, 2013

After my ovarian cystectomy last August, everything seemed to be going very well indeed. I healed quite quickly, stopped aching all the time, started sleeping properly again, and soon felt incredibly energised. It made me realise how much waking several times in the night was wearing me out.

I was supposed to get another ultrasound scan in October to see whether the cyst has truly gone, but due to an administrative error, that scan didn’t end up happening until last week. The bad news is that my cyst is back, and very nearly as big as it was last time. In just five months, it’s grown to 7cm across, which is a bit too rapid for my liking.

Now before I go further, this next bit may stray into ‘too much information’ for some of you, so if you’re squeamish, don’t read on.

My consultant told me that the first operation simply drained the cyst. The hope, obviously, was that that would be enough and that it wouldn’t recur. My assumption is that draining a cyst is easier than removing it, and so that’s the first thing they try.

The cyst itself appears to have been an endometrioid or endometrial cyst, also disturbingly called a ‘chocolate cyst’. What happens is that a little bit of the lining of the uterus comes away, travels to an ovary and starts to grow. Just like it would in the uterus, it bleeds, and the cyst grows.

So rather than being full of mucous, as some cysts are, mine was full of blood. And it will continue to grow unless it is removed.

Whilst my consultant generously gave me the option to wait and see what might happen, it was pretty clear that the next step is another operation, but this time, rather than just draining the cyst, they will attempt to peel the sac itself away from the ovary. That’s likely easier said than done, not least because the photo clearly showed how the ovary had stretched as the cyst grew inside it. Contrary to what I had imagined, the cyst wasn’t a sort of balloon on the outside of the ovary, but embedded in it, which will make it a bit tricky to remove.

The weird thing is that I didn’t feel any of the pain or discomfort that I had had for the first nine months of last year… at least, not until a couple of days after the ultrasound. I don’t know if it was because the process of doing the scan poked it about a bit, if it was psychosomatic, or if the inflection point is just co-incidental.

But what I can say is that I’m now at the same stage I was around April last year with regard to symptoms, and I know it’s going to be a while before the surgery’s arranged. So, fun time ahead. At least, though, I know what to expect.

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In memoriam: Michael O’Connor Clarke

October 14, 2012

“Brace yerself,” said Michael in a 2004 email, as he sent me a photo of himself and his three children, Charlie, Lily & Ruairi. “A tad more up to date,” he said of this snap. “Gone, the floppy fringe of my Martin Fry period. Back to the wash-it-and-leave-it version.” Back then, Michael was in PR and I was [...]

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The story of an annoying sac of liquid

August 15, 2012

I’m back at my desk today for the first time since I had my grapefruit-sized ovarian cyst removed last Thursday. Although I’m not feeling particularly intelligent today, I am free from pain for the first time in months and I’m very happy with the speed of my recovery. I thought it might be worth just [...]

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Out of Office

August 9, 2012

I’m off to hospital this morning to get my ovarian cyst removed. The last couple of months especially have been a bit miserable, and I’ll be glad once today is over. It’s a general anaesthetic, which I’ve never had before, but I should be in and out today and back home by tonight. And i [...]

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Cyst news

June 26, 2012

As mentioned in passing in an earlier post, about a month ago I was diagnosed with a 10cm ovarian cyst. Symptoms started right at the beginning of the year and since then have progressively worsened. Initially it was diagnosed as a mild urinary infection, confirmed by tests, but when antibiotics didn’t actually clear things up [...]

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Slowly, slowly, catchy monkey

May 17, 2012

It’s been a while since I last blogged, so I thought I’d just update you on what’s been going on. The first thing is that after I realised that the Queen of the May Kickstarter project wasn’t going to work out, I did a bit of thinking about what it was I was trying to [...]

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