life

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!

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

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.

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. 

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.

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.

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.

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.

In memoriam: Michael O’Connor Clarke

by Suw on October 14, 2012

Michael O'Connor Clarke, Father's Day 2004“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 struggling with a mutating freelance gig that had way more marketing and PR work in it than I was comfortable with, having no experience of either. We chatted on IM about the problem, and Michael offered to talk it all through with me on Skype. He spent a lot of time with me, helping me craft a strategy, pointing me at the best resources, and giving me the moral support I so desperately needed at the time. In short, I was at the bottom of a big hole and, from the other side of the Atlantic, Michael dug me out of it.

That was typical of Michael. No matter how busy he was, he always had time to help his friends out. He always found time for that call, that email, that chat, that pep talk.

We were friends mainly through electronic means, through our blogs or IM or IRC. Indeed, three days before that email, Michael had celebrated the opening of my new Corante blog about social media, Strange Attractor. Michael also blogged at Corante for a while, at Flackster, a blog which is still funny, sharp and insightful all these years later.

Michael was one of a small group of bloggers who opened their arms to this digital waif, back then looking desperately for purpose and peers. Michael gave selflessly of his time, support and friendship, and it was always a great shame that we didn’t get to meet up more often.

When we did have the opportunity to get together, it was always for far too short a time. Conversation flowed so easily and Michael’s sharp wit, always evident in chat and email, was even funnier in person. His intelligence, compassion and empathy shone through. No matter what I was going through, Michael would always have something wise and apposite to say. But our meetings were never long enough, never often enough.

Michael was diagnosed with oesophageal cancer over the summer. Kevin and I hoped as hard as we could that he would make a swift and complete recovery, but it was sadly not to be. We heard this morning the awful news that Michael passed away yesterday.

Michael leaves many legacies, including Toronto’s annual HoHoTO fundraising event that he helped found and which has, to date, raised $165,000 for the Daily Bread Food Bank. He touched so many lives, directly and indirectly, and made those lives that much better. He was a great friend, despite the fact that he often protested that he wasn’t.

Michael’s was a life lived with love. Love for his wife, Leona, for his children, for his family, for his friends and for strangers, for the causes he believed in, for the little things and the big things. Michael, we love you and we will miss you.

 

The story of an annoying sac of liquid

by Suw on 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 recounting the full story, because in my search for information on ovarian cysts I got a lot of the same basic facts over and again, and lots of fora where women get together to discuss their experiences, but very little in the way of “this is what it was like for me”. I could have really done with reading someone else’s story of their ovarian cyst, if only to have some sort of frame of reference.

That said, if you find this blog post because you either suspect you have an ovarian cyst or because you’ve been diagnosed with one, please bear in mind that different people have different experiences. You might find that yours is radically different to mine, so don’t take anything here as medical advice or any sort of prediction. This is just my story.

It’s actually a story that I think started years ago. Now that the cyst is gone, I realise just how it made its presence felt. Looking back, I realise that it was there at least five years ago, if not longer. I can recognise a point at which my periods got heavier, longer and more painful. More recently, probably a year or so ago, I started getting minor spotting before and after. That was, I suspect, another warning sign.

Yet another long-term warning sign was the sensation that there was ‘something in the way’, something that seemed to move out of the way, but which had been there so long that it seemed just normal. It’s funny how we can convince ourselves that something which, when you spell it out like that sounds deserving of immediately medical investigation, can become just a part of normality.

But all those warning signs did become a part of normality. I ignored them, assumed that they were just a sign of getting a bit older. I even ignored a brief episode last year of hot and cold flushes, which may have been some sort of bug or may have been the cyst causing a temporary hormonal wobble.

I really was foolish not to go and get a check-up. Partly that was down to my ongoing irrational fear of doctors (long story), partly it was down to not really believing that anything was wrong and not wanting to waste anyone’s time.

If you have had any of the above symptoms and haven’t been to see a doctor, go now. You aren’t wasting anyone’s time and the doctor will be as happy as you are if it turns out to be nothing. But if it’s a cyst, or something else, you want to get it treated sooner rather than later.

So, fast forward to early January. That’s when symptoms really started to manifest, specifically I started to find that pretty much everything inside my pelvis had become tender. Going for a wee was just slightly painful. Sometimes going for a poo was the same. I ignored it again, or tried to.

Deep down, I was worrying a lot and wondering what the hell was going on. I didn’t tell anyone, I just fretted away to myself, lying in bed, wondering why having a wee sometimes felt so much like hard work. I didn’t even mention it to my husband, I just tried to rationalise it away. I can be a real idiot sometimes.

Because the tenderness came and went, though, I felt that the symptoms were too vague for me to take to a doctor. Again, that was stupid. Have I mentioned that I can be really very stupid at times? I can. Persistently.

Over the Easter long weekend in early April, however, I woke up in agony and Kevin and I went to the walk-in clinic at the local cottage hospital. They took a urine sample, diagnosed a mild urinary tract infection and gave me antibiotics. The end of that week we went to the US for a holiday, but the pain returned. I had had a urinary tract infection – the analysis of my urine was clear on that – but that was a side show. The main act had yet to reveal itself.

As the discomfort and pain increased, I realised that I was going to have to go and see my doctor, except I hadn’t actually got round to registering with one in the months we’d been in Woking. We managed to do that pretty quickly, thankfully, and I was given an appointment with a doctor who has a good reputation on gynaecological issues.

She took a look, had a poke about, and said that the only way to know what was going on was to do an ultrasound. She gave me a number to ring at the local hospital and sent me off.

Now, herewith a lesson for local hospitals: When you switch your lines on, don’t have an interim message that says “All appointments are full for today” in between the “Lines are closed” message and the point where people are actually answering the phones. I was calling at 8am, as lines were only open between 8am and 10am for appointments that day or the day after, and I kept getting this damnable message that all appointments were full. That wasn’t actually true. Only when I rang one day at 8.10am did I find out that there were plenty of appointments each day,  I’d just been served the wrong message because I was ringing a fraction too early.

The ultrasound easily picked up the cyst as the source of my problems. It was 8.0 x 8.5 x 9.5cm, sitting centrally in my pelvis and crushing my bladder into a boomerang shape. It was also crushing pretty much everything else that got in its way.

As cysts go, it was one of the better sort to have: a simple sac of fluid with no signs of any solid bits. They did a blood test for any cancer markers, just in case, but a simple cyst like this is very unlikely to be cancerous, I was told. The tests came back clear.

It was a huge, huge relief to know finally what was going on, and I wished I’d acted earlier. If I had, the wait that ensued then to get my op would have been much less unpleasant. As it was, I experienced a lot more pain than I would have. My poor bladder struggled to cope with my normal levels of tea drinking and I had to ensure that I didn’t ever let it get full because that was agony. I was waking every night in pain as the cyst settled on top of one organ or another, crushing it. Painkillers became essential every day, but they often left me feeling woozy and vague.

I didn’t have a particularly long wait, as waits go, but it really was an unpleasant time. I found it hard to focus on work and didn’t really want to go out. I didn’t dare drink alcohol as I never knew if I’d need painkillers later or not. I wasn’t able to go for more than about an hour or two without needing a wee, which is fine when working from home, but less good if you’re not near a loo. And I would be woken two or three times a night either from the need to pee or the pain.

I could have avoided all that if I’d just gone to the doctor in January. Or a few years ago.

The pre-op assessment was pretty easy going: Just a few questions about my health, allergies, and habits, another urine test and an MRSA swab to make sure that I wasn’t infected. (MRSA doesn’t just hang out in hospitals.)

In the end, the operation went off without a hitch. The surgeon told me that they would first insert a needle in through my belly button, inflate my abdomen with gas, then open up an incision in the same spot to send in the camera. Once that was there, they’d be able to see exactly which ovary my cyst was attached to, as that had not been clear in the ultrasound. As I expected given the relative pain, it was my left ovary.

They then made very small incisions along my bikini line both centrally and on the left, drained the fluid out of my cyst, then removed the sac itself. The operation scars are small, neat and tidy, and I’m healing well.

(Note, I might have the exact sequence of events wrong, so any gynaecologists who want to clarify the procedure, please be my guest in the comments and then I’ll update the post.)

The nurses, doctors, surgeons, everyone I met at St Peter’s in Chertsey were wonderful. They were kind, friendly and comforting. I was especially happy to see a nurse by my side in the recovery room as I came round. She stayed with me the whole time, watching my monitors and making sure that I was ok and although we didn’t exchange a single word, I was very grateful for her presence.

Coming round is, though, a strange experience. I had been told that there was a high likelihood that I would be able to go home that day, but I was very aware that time was ticking. There was actually a clock in my line of sight, and having been walked off to theatre about 3.15pm, I was surprise to see myself not waking up until 5.45pm (precisely).

I really fought for consciousness, because I didn’t want them to think that I wasn’t going to be well enough to go home. But that whole fluttery eyelids thing you see on TV? Yeah, did that. Once I had my eyes open, the next battle was to keep them open, and to start really getting a grip on consciousness instead of just idly batting it about like a cat with a dead mouse. Overall, that process took a full hour, and then there was a bit of a wait for someone to take me to the ward.

Kevin happened to call the ward just as I was being wheeled in, and was by my side within minutes, which was a relief. Then it was a case of waiting, both for more painkillers, although I felt pretty damn chirpy by 9pm, and for the various layers of nurses, junior doctors and senior doctors to come and see me and say if I was ready to go home. I was, and we left at about 10.30pm. It was glorious to sleep in my own bed!

Now, one of the odd things about abdominal operations, I was told by the surgeon, is that the nerves that serve your diaphragm also serve the tops of your shoulders and any irritation to your diaphragm can cause pain in your shoulders. My diaphragm did indeed get irritated, and oh boy, they were right about the pain! If I breathed wrong, it felt as if someone was trying to stab their way in through my shoulders. Painkillers helped, but I found myself regulating my breathing to reduce the pain. It worked. Mostly.

Thankfully, that was gone within 24 hours, though, and the rest of the pain has been very manageable and happily decreasing more each day to the point where today I feel almost none.

So there we are. I’m still recovering, though I’m very happy with the improvement over the last week. I spent this morning at my desk but suspect this afternoon might be spent napping and watching crap daytime TV from the sofa. I’m determined to take the advice I give everyone else when they are recuperating: Take it easy! There’s no point rushing a recovery, you only make it take longer overall.

And finally, if you’re in any doubt at all about whether to go and see a doctor about some vague and nebulous symptom, please, just go. Better to find it’s nothing than inflict unnecessary pain and anguish on yourself.

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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For 2012

December 31, 2011

Last year, I laid out my goals for the year. If was a relatively modest list which I had no doubt I’d be able to plough through in no time at all. Ha ha ha ha ha ha. *pauses for breath* Ha ha ha ha ha ha ha ha ha ha ha. At least I managed to [...]

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O2 suck: Problem now resolved.

November 30, 2011

UPDATE 5 DEC 11: Having been rather robust with my criticism it’s only fair now to be as forthright about the follow up from O2. The web team at O2 got in touch after my rather angry rant last Wednesday and asked me to email them with details, which I did on Thursday. I was [...]

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