Category Archives: Operation

Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

3 years of myasthenia gravis

This month marks my 3 year anniversary of myasthenia gravis diagnosis. I realised this today with a bit of a shock and found myself asking how 3 years could feel so long and short at the same time?!

Where I was 3 years ago

September 2013 – I had had an incident in March where my right eye had gone squint over night. After lots of tests at Moorfield Eye Hospital, I was given the all clear and 2 weeks later the eye was back to normal. I let out a sigh of relief and put it out if my mind for fear that thinking about it might make my eye go squint again. But in September the double vision brought on by the squint eye crept back and as I sat at work not knowing which screen was the real one, I knew I had to get back to the hospital. Panic struck – once could be bad luck but twice was a pattern. 

I was told that I had suspected myasthenia gravis and a diagnosis had been sent to my old address in April. 6 months of knowing about the condition without treatment felt unfair and as the symptoms progressed over the coming months I got angry about it.

 As I’m sure many of you can relate to, hearing you have myasthenia gravis for the first time is upsetting and terrifying. What is it? What does it mean for me? Googling it didn’t make me feel any better – in fact I started to panic that life as I knew it was about to rapidly change. And it did.

Before I received my first appointment with my consultant and therefore received treatment, my vision was almost permanently double, I started to have difficulties with speech, I struggled swallowing and couldn’t really eat around people due to awkwardness of it all.

For a long time after September 2013,  I was in a difficult place both mentally and physically.

Between Sept 2013 and Sept 2016

I’ve had:

1 thymectomy- an operation to remove the thymus gland

2 specialist consultants 

3 jobs

4 different kinds of medication

The pleasure of attending 5 Myaware meetups

and…

I’ve written more than 365 blogs about living with the condition. 

September 2016

3 years on and I often forget I have MG. After seeing my new Edinburgh-based consultant, I’ve cut out 1 drug and, as I’m doing well, I should be gradually reducing another shortly.  I’m in drug induced remission according to the doctor and we’re testing whether that will hold as I take the drugs away…a bit like a game of Jenga.

Since my move back to Scotland, my quality of life is superb which in turn has helped my symptoms stabilise and reduce. My work-life balance is…balanced and the stress I feel in Edinburgh, compared to London, is minimal. I now get the occasional ptosis (eyelid droop) and I get exhausted still if I over exert/indulge myself, but that’s about it. Both of those things aren’t too hard to live with when I look back to the alternative experience 3 years ago.

On the over indulgence point, I’m currently taking a month off from alcohol mainly to rest my liver after a rather boozy summer. But I’m also keeping a close eye on how my energy levels are without alcohol in my life as I’m not averse to cutting it out for good.

I’ve felt strong enough recently to try a host of outdoors sports: kayaking, paddle boarding and Munro (Scottish mountains over 3,000ft) climbing (as pictured with my friend Steph). Each of these adventures were challenging but I managed without any MG-related difficulties. This is on top of 3 fitness sessions a week.

And most importantly, I’m writing almost every day. Whether anything will ever come of it or not, I’m really enjoying the discipline and the creative outlet that it gives me. Having the mental space and quiet to do that is something I couldn’t of dreamed of 3 years ago.

3 years is a long and short time 

While much has changed over the last 3 years I know that in another 3 years time, everything will likely be different again. I might have had a crisis (where your muscles stop working properly) but I might also have trekked to Everest base camp, I might have had to give up working full time or I might be running a team. That’s the problem with MG – it fluctuates so all I can do is try to keep myself strong, follow the doctors orders and, most importantly, listen to my body.

Myasthenia and post-thymectomy blues

A conversation I had over the last few days about the feelings you have after an operation got me thinking about my thymectomy. While there are a range of emotions you go through, my thoughts were focused on the disappointment you feel if it isn’t an instant success. I thought I’d blog about that nearly two years after my operation.

You go into hospital with high hopes when having a thymectomy –  you read that’s there a 30% chance it’ll make your MG vanish. You try to remember that’s still 70% of people who continue to live with it, but your mind says ‘be positive’. You think your consultant and surgeon have pushed this on you for a reason, right? I mean, it was practically from your first MG appointment that you were encouraged to have a thymectomy. 

Then, as happens for the majority, you have the operation and your symptoms are still there. In fact they may flare up because of the stress your body’s under post- operation. It’s spoken about or assumed by the medical team that you’re not one of the 30%. The good teams will tell you that it takes time for many people to feel the full impact of the thymectomy. Your loved ones will either be too polite to say anything or they’ll be straight up with you – they’ll remind you that hope isn’t gone. But once you’re strong enough to want more than basic comfort, you’ll begin to feel the loss of something you only ever had a slim chance of getting. An easy cure. That’s when you might hit a wall.

That wall will look different depending on the way your mind works and how you react to the thymectomy – for me, it looked like a mountain blocking my path. That I couldn’t hope to climb. Instead I sat down and looked up at the mountain – studied its sharp crags, the rain lashing down around it, the mist lingering at its peak, the broken path leading up at an angle I could hardly fathom. I sat still in the silence of the mountain’s valley and asked myself ‘why did I bother trying’. How deluded was I to think I’d be one of the ‘special ones’. 

As I sat stewing in that anger and frustration, I missed the initial changes.

I barely recognised the stable state I found myself in. Months past and all I had was ptosis and a bit of fatigue. No sign of double vision, slurred speech, difficulties swallowing or weak limbs. I woke from my silent trance to see that the mountain had transformed into a jagged cliff edge with gentle clouds over head and a calm sea lapping away. It was much more manageable now – everything was. While I went for little strolls, I didn’t stray too far. I was scared to try the path just yet for fear that it would shape shift before my eyes back into the terrifying rock face. Or that a surprise landslide would throw me into the sea and my legs would seize up. I didn’t believe the change was real or would last.

The symptoms stayed consistent and I found I was able to challenge myself more with work, with the blog and fitness. I began to feel stronger than I had for years – the only thing that remained of my MG was the fatigue when I overdid it and the ptosis. By the time it came to the year anniversary, I looked to the spot where the mountain had turned into a cliff and saw a rolling hill. The sun was peaking through the clouds now and illuminating a meandering path. This made me smile from my heart outwards and for the first time I considered that the mountain might not come back at all if I was careful. I went for further strolls now – roaming, seeking, testing myself. 

It’ll be two years in September since I had my thymectomy and when I find myself in that valley now, I see only that. A peaceful valley with mountains and cliffs and hills in the backdrop. I walk around safe in knowledge that I won’t fall or find myself scrambling on my hands and knees (unless I choose to).

 When I think about the first few months after the operation, I realise that the dark feelings I had are still there deep down. Like I’ve stored them away so I always remember. But I can look at them from a safe distance and know that accepting them and waiting for them to pass was the best thing I could have done. They probably won’t ever leave me because they were part of the journey of acceptance and because I think of them every time I see my ever fading scar. 

The majority of us won’t have that thymectomy miracle and while it’s good to be hopeful, it’s not the end of the story if it doesn’t happen. Even if it might feel that way at the time. 

Be patient, listen to your body and your mind, embrace what you’re feeling rather than trying to shut it out and pay close attention to the little changes. You might find yourself in that valley with me someday.

262/365 – Recovery from thymectomy at home

Following on from the last two blogs about my thymectomy operation and recovering in hospital, I thought I would complete the trilogy. As a reminder, I had the open chest version of this operation to remove my thymus – the gland that during childhood and teenage years helps to build your immune system. This meant I had my breast bone broken so they could get underneath it and then put back together with wire. 

As it’s quite a traumatic experience for the body, the full recovery period is six weeks. Doctors recommend you listen to your body but say it should be at least 3 weeks before you go back to work. Thankfully, I kept my job on part-time and as I worked Thursday/Friday I was able to only take two weeks off and for it to be nearly three weeks before I returned to the office.

So how was recovery for me? Tough at first but actually quite rewarding in the long run. For those that follow the blog you’ll know I’m somewhat of a fitness junkie and the thought of not being able to exercise for six weeks terrified me (and Elaine). What kind of monster would I turn into without getting my fix? In reality though, I struggled to breathe properly for the first few weeks – the effort of walking up a hill exhausted me and I still was struggling for concentration. I had grand plans of doing some writing and lots of reading during the recovery time , but in reality I felt completely wiped by it.

From my first night I decided to try to get back out and about as it would do no good to let myself get scared. My mum, my brother, Elaine and I went to the local cinema to see Proud. While I was nervous about being out and it took me a while to relax, I was able to switch off eventually. I tried to get out for little walks to start with – just around my area – and then built it up gradually. After leaving hospital, I rapidly reduced the painkillers and stopped taking then after four days at home. 
Public transport was a bit of an issue because it is jolty – I didn’t get a bus until the second weekend after my operation and had to make sure I got a seat as standing up holding onto a handle would have been difficult. Particularly as you have to stay rigid. Then I finally got a tube a few days before my first days back at work at a non-peak time to test out how I felt – I clutched my chest the whole way for the first few trips in case anyone bumped me. You just can’t stand even a little bit of pressure in those early days. 
In recovery week three I went to the Globe theatre which meant three hours of standing in the cold. That was a step too far too soon and I got sick as a result. My body wasn’t ready for it. 

 
Around that time, it may have been partly to cheer myself up, Elaine and I started looking at Camino de Santiago part two. We both needed something to look forward to at that point and looking at the route gave me much needed distraction. It also made me start to think about exercise and getting strong again. 

By the fourth week , I was starting to feel good and was able to enjoy my days off work. I did my first full week back at work on week give and survived, but that was only cover. I was able to read, socialise and walk further and further.

By week six I was ready to get back in the gym, if not a little apprehensive. I built up slowly and it was another couple of weeks before I could chest strength work. I took up bikram yoga to help with the strength and I felt fantastic. If not gone, my symptoms were stabilised. The hospital was a distant memory and the bio oil was day-by-day reducing my scar.

261/365 – Recovery from thymectomy in hospital 

I wrote yesterday about it being a year since my thymectomy and focused on the experience of the operation. Sorry if I scared or upset anyone who is yet to have it – that was my experience and it was a lot  better than I thought it would be. I must say at this point that I think it has made a positive difference as my symptoms are a lot more stable now. I would do it again tomorrow for the chance to be symptom free or have my condition stabilised. 

Today, I want to write about my experiences of recovery – I’m pictured above the night I got out of hospital tucking into a fajita.

I didn’t really wake up on day 2 (Tuesday) as I had barely slept. I was in a lot of pain by then and in the morning I was really struggling to breathe and felt like my lung had collapsed. I was still in intensive care and hitting the morphine, but it didn’t seem to be doing much. Before I was moved from intensive care, I had my first physio session. I still had the drains in at that point – two holes below my breasts that were attached by tube to a container. While it was really uncomfortable, he got me up to walk a little and I tried not to grimace at how fragile I felt. I clutched my rolled up towel to my gaping chest – it would protect me. 

The nurses would come around regularly to take bloods, blood pressure and temperature. I saw members of the surgical team on the first recovery day but can’t remember much of what they said – it was a quick check to see I was alright. I continued to beep and would panic anytime my alarm went off. I never saw my surgeon again. 

In the afternoon, I was moved out of intensive care. Before I could do that they had to remove my drip and the drains. That was quite a painful and freaky experience – I was able to feel two tubes being pulled out from the inside – but it was over in a flash.

I was put in a two person room with a tiny Italian lady, who must have been eighty with tight little grey curls. She hardly spoke a word of English. I’ve never wanted to know how to speak Italian but in those days I would have loved to know the basics. Although it didn’t stop us trying to communicate. Still, I was grateful for the silence in between all the nurse checks, meals, dr visits and medication taking. I didn’t have the concentration to read at that point – or much in the first week at all. I did however start watching Homeland to distract myself from the discomfort – after a few minutes into the first episode I was hooked.

From that point on, I had regular visits from Elaine and my mum and dad separately and they were less fussy about visiting hours. The first visiting hours started at 9.30ish until 12pm and then the evening ones were from 4-8pm. They would help me brush my hair, keep me busy with tales of their adventures around London, my mum would pass on all the family and friend well wishes (which were always lovely to hear) and, in the first few days, Elaine even helped me wash. 

That was my second day of recovery (Wednesday) and probably my worst. I had been given tramadol the night before and it made me feel as sick as a dog. I tossed and turned for the whole night, and when Elaine visited in the morning I had a fever. My gown was damp with sweat, but I still felt too ill to wash myself. She took care of me as I focused on standing up. She also brought the Italian lady in the next bed a cake and I was reminded again how thoughtful and kind she is.

My mum had the genius idea of buying me a neck rest and that was what helped me get my first decent sleep in hospital on my third night. I would thoroughly recommend taking one if, like me, you don’t  normally sleep on your back as after the thymectomy you will be unable to sleep on your side for weeks. I felt like a new woman when I woke after at least six straight hours – I could tell the sleep had pushed me over the worst of it.

My second physio visit was this day, Thursday, and he made me go for a walk with him around the hospital. I wasn’t sure I was ready for it as I struggled to breath going from the toilet back to bed. But we took it slowly and I tried to conceal that I was struggling to breathe as we walked and talked. After that, he dismissed me. I would be ‘grand’, he said. 

I got back into bed exhausted from the effort of a 10 minute walk and couldn’t help worrying about how long it was going to take me to get back to normal. 

My last two days in hospital were really quite peaceful and I would even go as far as to say I was a little disappointed that my break from the routine would end soon. The nurses kept me chatting, my appetite returned with vengeance, my friend Jo came to visit and made me realise how much laughing hurt now. I could hug properly again – despite being tender still – and I took to going for little walks around the hospital occasionally forgetting to do up my gown properly. 

I often remembered not to put weight on my hands just as I was about to – it felt like being stabbed in the chest. I had never fully appreciated how many things I used my chest for. 

The tests continued and I was stable – I was told I would get to go home on Friday morning. The night before my departure I binged on Homeland and then went to sleep to the sound of the woman in the next dorm doing her rosary beads and praying out loud in Italian. Around 1.30am there was screaming in the corridor – feeling protective of my roomate I got up to check. It was a man asking to be let out to go to the shop to get beer – if he is one of my new neighbours I’m glad to be getting out, I thought. 

My dad had gone home by now but my brother arrived just in time for my discharge. I was given a sack of drugs, a list of instructions and a hug by my Italian neighbour. I worried about her for weeks after and meant to go back to visit, but never made it. As my brother carried out my bag full of clothes I hadn’t worn, my mum and Elaine supported me out onto the Marylebone street which I was a little nervous about. Back to the real world meant people buzzing around me and chaos – I hugged my arms tightly around my chest. 

It was over and I was fine. My ptosis was still there so I knew I wasn’t one of those immediately cured types but I hoped for longer term remission. I still do as it can take up to two years. 

259/365 – One year anniversary of my thymectomy

365 days ago I woke up reluctantly after a night of tossing and turning. My pyjamas were soaked with sweat and I kept thinking about the letters I hadn’t finished. I was due in the Marlyebone hospital, where I had spent many pre-op hours before, by 8am. As I quickly showered and dressed, my surgeon’s words kept coming back to me ‘you’ll be fine – I do more of these operations than anyone else in the country’.

The day before I had phoned to check whether the thymectomy – an open chest operation where the breast bone is broken and mended with wires to remove the thymus – was going ahead. Of course I hoped it wasn’t, but no such luck. My mum, dad and I had a Sunday roast – my supper of choice – and an attempt at an early night. 

As Elaine and I walked briskly through Oxford Circus – in amongst the commuter chaos – I felt a quiet calm come over me. I had to keep it together – I would be fine. For the last few weeks I had been panicking and had even written letters to my loved ones in case something happened, but I couldn’t bring myself to finish them. 

We arrived and I was told to wait in an empty room – I was eventually weighed, had my height taken and my blood pressure checked to distinguish the amount of anaesthesia I needed. I had to change into my hospital gown, which Elaine had much fun taking the piss out of. I was nervous again and went to look out the window to distract myself. Thankfully, my wonderful woman picked the perfect time to ask me for a dance. 

My mum and dad arrived from their hotel and we chatted for what seemed like forever – still no update from the medical staff. As I wasn’t allowed to eat after midnight, I was starting to tire and lay down. Eventually the waiting in a stuffy, natural light deprived, room got too much for my dad and he went out for a walk. Of course not long after I got the nod – I was put in a wheelie bed and wheeled to the lift. It was around 2.30pm. 

A few floors down Elaine and my mum had to say goodbye – they smiled and we said ‘see you soon’ refusing to acknowledge it could go any other way. As the doors shut behind them and my escort, my legs started to shake uncontrollably. 

The freezing basement – the anaesthetist – talking talking. Darkness.

I’ve been asked whether I knew time had passed when I woke up – I felt like I had been asleep for weeks. Then there were flashes of lights and I remember straining to see a clock. I couldn’t figure out what was going on and there was so much beeping. Then my parents were above me – I can’t remember a word of what they said but I’ve never been more glad to see those faces. The time they were could have been 10 seconds or 20 minutes, but after they left Elaine came in and she smiled. I was out of it still but she told me about what they had been up to and I tried to listen, fighting to come back. She held my hand throughout. 

I may have been in intensive care, but I’m not one to pass up a meal so after Elaine left I admitted how hungry I was. A memory of toast and jam from when I had an operation as a child flooded back to me – the kind doctor brought me tea and toast and explained how the morphine drip worked. There was a handy little button I could press as soon as I felt sore. I was still on oxygen but I managed to eat a piece of toast and slurped down the tea.

I wasn’t really aware of any pain for the first few hours, but I hit the morphine button regularly just in case it began creeping in. I just felt weak and stiff – I couldn’t really move much and I kept dozing. There was a man who seemed to be in a lot of pain a few beds along who was groaning loudly and the beeping was constant and in different harmonies. I would panic when my alarm went off. 

The gap between my parents and Elaine’s first and second visit that day seems like forever – I remember watching the clock and the door desperate to see them. I felt fragile.

They did come through that door eventually, after going for some dinner and wine. Inside I was dancing but in the morphine haze I’m not even sure if I smiled. They brought all kinds of goodies and Elaine even brought a rose which I wasn’t meant to keep due to it being intensive care. But some kind nurse let me. Apparently I was cracking jokes about my sexy chest drains. 

That night was horrific – I had doctors standing over me in the middle of the night discussing me like I was an inanimate object, which I told them off for, had a searing pain in my chest and realised when I had to get up to the toilet in the middle of the night that I was going to have to allow myself to recover slowly. I wasn’t allowed to put weight on my hands – thankfully I had been working on my core strength in the build up to the operation as that was what pulled me up once I pushed my feet off the end of the bed.

It was one of those sleep free nights where I was so grateful for one kind nurse who minded me throughout and even made me laugh a little. But I do remember thinking I’ll be ok and at that point there was no sign of crisis. 

More tomorrow.

159/365 – Rapid progress

On Sunday, I visited one of my oldest friends Sarah who has just moved from Edinburgh to Southend-on-Sea. Delighted to have one of my favourite people less than an hour away by train, the visit was just what I needed in my post holiday slump. I hadn’t seen her since the end of April when we ventured to Paris and completed a duathlon together – this feels like a lifetime ago now. Apparently it was long enough for a change to take place.

With a searing hot sun, even in the depths of the afternoon, I had a vest top on that showed my scar. As we sat having dinner, after a few hours in each other’s company, Sarah commented that my thymectomy scar had become lighter over the last month. She seemed to be shocked by how much it had improved and of course I was delighted to hear it. Like anything aesthetic about yourself, change is difficult to gauge. While there are days that I’m acutely aware of it, at other times days can pass without me noticing. Earlier in the healing process, the changes were more obvious.

While I know my scar will always be with me, the change from angry red to calm white is most welcome. It is still at its darkest on the most visible part of my chest – where the deepest/original incision was made. But I am grateful to Sarah for noticing what I did not and for having the courage to comment on it.  

Here I wrote about the full thymectomy compared to keyhole surgery.

 

109/365 – Damaged nerves from thymectomy

It’s been more than six months since my thymectomy but my scar and the memories of hospital food are not all that I’m left with. From what I read, I’m not alone in this.

When I woke up from the operation in intensive care, I felt like I had been hit by a truck and it took all I had to focus on breathing and not crying from the pain. However, once the initial pain of the trauma decreased I realised that the back of my right arm felt strange. 

As a teenager, I had fallen on my knee while snowboarding on a dry slope and the impact made my knee feel numb to touch and tingly for years. The back of my arm felt exactly the same but all it had done was have a little sleep while my chest was being cut open, right? Clearly not – when I told the nurse about it she spoke to the surgeons team. They said it was probably temporary nerve damage from the way I was lying during the operation. That it should disappear after a short period of time. 

I’m still waiting for it to go. Most of the time I don’t notice it, but after exercise it goes a shade of red that the rest of my body does not. It also tingles more than anywhere else if I’m cold and go in the shower. Occasionally it gives me an uncomfortable sensation when someone touches me there. Overall, I know I’m lucky compared to others.

I’ve read of people who have had the full thymectomy and lost sensation in their chest and elsewhere around the area. That must be really difficult and affect so many different aspects of life. Mine is just occasionally uncomfortable and a bit weird. Hopefully, like my knee, I’ll eventually regain full sensation. 

77/365 – Does where you live affect your myasthenia?

While currently it’s an impossible question to answer in the UK, due to the lack of data collated, I often wonder whether where you live affects myasthenia gravis. I mean this in many ways.

Living conditions

As there is no UK-wide data collated for MG it is hard to know what affect where you’re born and raised has on whether you’re likely to get myasthenia gravis or not. Whether this affects at what age the condition comes on is also a mystery. It would be interesting to see a national breakdown on a map of people with myasthenia plotting the number in each council area/region. Once the researchers have this information it will be easier for them to dig into different trends.

I often wonder would my condition have come on so early if I didn’t live in polluted London and work in a high stress job? Then I remember that many people are much younger when it comes on and I was fortunate to have most of my twenties MG-free.

Diagnosis

From what I have heard from others with MG, where you live definitely can affect how long it takes to get diagnosed. First of all it depends on whether you have a switched-on GP – that can be an issue anywhere. The stage after that –  when you get referred to specialists – is where location can make a big difference. If you have staff in these hospitals/centres that are aware of MG, the diagnosis is likely to be quicker which means faster treatment. However, if you live far from one of the facilities where myasthenia experts are based it is likely to take longer. In this case, you can go through several different hospitals before getting referred to a professional able to treat you properly.

I’ve heard many stories of people waiting years to have their MG diagnosed after several misdiagnosis’. Most of the time they have ended up needing to be hospitalised for long periods of times – the disruption in a person’s life including job-wise and the expense on the NHS for prolonged stays like this are just two of many reasons to push for better awareness. In these instances, the local hospitals they have been referred to haven’t picked up on the symptoms and they’ve ended up having to stay in/travel to hospitals far from where they are based.

I almost feel lucky that it only took me six months to be diagnosed, although I know I shouldn’t. Let’s hope future generations are not saying the same thing.

Treatment

Do you receive better/different treatment depending where your specialist works? There is much discussion about a post code lottery when it comes to medical treatment and I wonder what extent that is true with MG. Do certain areas with more budget offer a wider selection of treatment options or do they try a new treatment more than once without deciding it hasn’t worked? From what I have heard, the answer is yes. 

You have the right to be treated wherever you like, but people naturally stick to the closest hospitals to where they live. While they are saving on travel time and expense, are they missing out on different treatment plans?

Utopia

Thinking about these factors it’s hard to pin where the best place to live is. In a city, you’re more likely to be served by a hospital with experts but in the countryside you’re free from the stress, pollution, and potential virus outbreak. 

I often think about eventually moving back home to Edinburgh, but wonder how good the care is up there in comparison to London. Would that be enough to stop me from moving? Probably not, but it will be enough to make me think carefully before threatening to leave the excellent care I’ve received in the capital.

59/365 – Airport reality check

You may remember me letting the secret slip that after my thymectomy in September I developed a super power. Ok, I’m not sure how ‘super’ or useful setting off shop alarms on entry and departure is but it’s certainly a unique skill. Just me and the serial shoplifters. Well, after feeling all special, the trip over the weekend has made me consider whether I’m just a normal afterall.

Both on the way through Luton security and in Copenhagen, I didn’t set the alarms off. In fact, I wonder if I’ve passed my powers on to Elaine as she managed to set it off on both occasions.

Superhero?

After asking the Myaware community, I was told in no uncertain terms by people who have also had thymectomies that it is odd that I’m setting shop alarms off. My consultant explained the different technology used in shop alarms, magnetic something or other, in comparison to alarms looking for metal. He agreed that it was strange and that I should try to see the surgeon. I did try to organise it but the appointment didn’t work and I’ve not heard back since (task for today’s to do list). 

People in the Myaware Facebook group did mention that airport security alarms have gone off for them because they are triggered by metal – which I have in abundance in my chest thanks to breast bone being knitted back together with what looks like chicken wire. 

On this occasion, I even mentioned to the security guard that it would probably go off. In this instance, it was straightforward as both sets of security guards spoke perfect English but I have worried about what could happen when I’m further afield. Would I get put head first through the bag check to scan my chest? Actually, that sounds quite fun. 

Anyway, the situation now is even more unclear and I’m hoping my surgeon will be able to reveal all if I can get another appointment lined up. In the mean time, I’m still thinking about my costume – a wooly hat seems to be my trademark in the photos so far so that will be included. Does it make me an unsuspecting badass or a mere mortal with a penchant for comfort?