Friday, I had a CT scan

As many of you will know, last Friday I attended a local hospital to have a CT scan of my chest.

What you may not know is why.

I’ve spent some time this last few days trying to find something to share from the internet to explain it all, but everything I found was either too technical, or basically incorrect compared to what I hear from other Myasthenia patients, so I’m going to share in my own simple terms and what I understand.

The CT was done using a contrast dye. We are looking specifically for my thymus gland – which is pretty much right in the middle of the chest, below the sternum. We are trying to establish two things:

1- We need to know if the gland is enlarged, in which case it needs removing before it gets any bigger and causes more trouble.

2- We need to know that I’m not hiding a thymoma (a tumour). Again, if that’s the case, we need to get it out. Not all thymomas are cancerous, but like any tumour, leaving it in carries it’s own risks.

There is a small chance I’ve had a tumour or enlarged thymoma since my first scan in around 2003, but I really hoping it only shows residual evidence as an mri suggested in 2005 (I have a very complicated medical history that includes blood clots. It was these blood clots, or ‘PE’s’ in my lungs that I had my initial CT scan for back in 2003. This was then an issue with the thymus was first noted).

Hopefully, the CT scan will be clear. Then I don’t need to go through an operation. Saying that, that brings its own issues as I’m then totally reliant on medical therapy to try to beat MG into submission. Just to note, a thymectomy will not ‘cure’ MG. In fact, it may not do anything! I’m not sure if the statistics, but I think it’s 50% chance of seeing an improvement post surgery – I may be wrong and am sure someone can point me to the right info.

From what I know having spoken to so many people that have had a thymectomy (an operation to remove the thymus gland), it’s a fairly straight forward operation, but it sounds rather grizzly!

In the U.K., there seems to be two main surgery options. Transternal and VATS.

The transternal approach is most common and is the only way the surgeon can be completely sure the entire thymus gland or thymoma is completely removed. I’ve been told the thymus is a tricky one and likes to hide from the scans behind ribs and lung tissue. The surgeon will go straight through the sternum (breast bone, like they would in most open-heart surgery operations) and have easy access to anything found.

The newer way of performing the surgery is VATS. Video Assisted Thoracoscopic (VATS) Thymectomy is done exactly how it sounds – four holes are made in the chest (like in this video if you are so inclined!) and the surgeon uses a camera to guide the procedure. (There are also pictures you can view on that link)

I have already decided that if I need to have surgery, I will have a transsternal thymectomy. I realise it is more invasive and will be a slightly longer recovery, but it is the only way to be sure completeness of thymectomy, as it will affect long-term clinical outcomes. Unfortunately there seems to be evidence that scans don’t always give a true picture of how invasive a thymus gland can become.

I’ll also have the added concern due to being high risk for blood clots and will no doubt be back on those wonderful injections for some time following surgery – but we’ll cross that bridge when we get to it.

I’ll update you when I’ve got the scan results… hopefully on the next couple of weeks.

If you’ve got any questions, or want to add to what I’ve written, please leave a comment. It is so great to be able to keep raising awareness of Myasthenia. Thanks for reading x

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Every time I park my car, I get a little bit scared

I received a ‘blue badge’ a few months ago to help me in my ongoing battle with Myasthenia Gravis, and every time I use it I get a little bit scared.

Ridiculous, right?

A little bit scared I’ll have to face condemning looks and stage whispers when I get out of my car and walk into the shops without a wheelchair.

A little bit scared someone will start making a scene and yelling “they’re disabled spaces, you shouldn’t be parking there!” As they walk by.

A little bit scared to get back to my car and find the ‘disable space police’ have left me an anonymous, angry note under my wiper.

I have what’s termed as an ‘invisible illness’.

I’m generally well turned out. I don’t wear my illness like a badge. I do make an effort to look nice. I do wear make up and try my best with my hair (an ongoing battle when you’ve got curly hair!). I try to keep a positive, happy attitude and not be a mood hoover to those around me.

You could walk past me and not have a clue about what’s going on inside my body.

I have a body that prevents me from bothering to want to leave the house unless I really need to and I prefer to have someone with me to support me when I do. I have a body that goes limp, like a rag doll, at a moments notice, causing me to trip up, I drop things all the time and my face droops, giving me a lopsided look! It can just feel like such a huge effort to bother to leave the house and I just can’t muster the energy to battle getting kids into the car seats, driving somewhere, fighting a pushchair or shopping trolley and wriggling baby out of the car before I’ve even started doing whatever it is that’s been planned.

I know my ‘turn’ to be challenged will come and someone will question my choice of parking space. And yet it’s crazy, because to get hold if one of the coveted blue badges, you’re really are put through the wringer. People must think these things are handed out willy-nilly!

One of the (many) requirements to gaining a blue badge is a walking test. It’s 100 meters. I failed at 80 meters. My test was stopped. I’d tripped twice in that distance and it was deemed too dangerous to continue. How embarrassing. I could not walk 100 meters unaided. Three years ago I climbed a mountain and walked 5 miles three times a week. Now, I use a shopping trolley as a walking aid to get from a car park to the shop I’m going into or just use my wheelchair.

I can’t even manage a browse around one shop. I feel overwhelmed just walking from the car park to the store, let along then actually getting around it!

And yet here I am, worrying every time I park that this will be the day someone accosts me about a disabled space. How ridiculous?

All I hope is there will be compassion for me to be able to access this much needed resource without further embarrassment being inflicted upon me by others. I’m not being lazy by parking as close to the shop door as I can, spread awareness, not opinions.

Pin-up? More like shabby chic!

Thank you to those of you that have popped me a message, checking in on me recently. I know I’ve dropped off some of the fb groups recently and become a little bit of a hermit as going out is just too much of a struggle, so thank you for being in touch!

Here’s a bit of a catch up of the last few weeks.

Many of you know I have a baby that wasn’t sleeping. He’s doing much better now and generally sleeps 7.30-5.30. We have the occasional night where he’ll “meep” throughout the night, but getting him back to sleep is just a case of lying him in his tummy, patting his back and before you know it, he’s pulled his knees up, rolled on his side and is out for the count. He wakes for his feed around 5-5.30 and dozes in my arms for another hour. It’s my favourite part of our day, just me and him, no distraction, sweet smelling hair against my face to kiss, a sleeping little boy snuggled in my arms. It’s perfect. Problem is, I’ve now developed a pretty decent bout of insomnia and spend much of my night awake, thinking that it’s not worth going to sleep as baby will probably wake me in a minute… well done kid, you’ve broken mommy.

A couple of weeks ago I had a concern that my oldest boy might have hearing problems. I booked him into the audiology clinic and we got a sneaky afternoon off school to go and get his lug holes checked. I explained to the lady what my concerns were, that joe doesn’t hear me, frequently mishears me and was getting into trouble for not doing as he was told. So there we are, sat in a little room with my lad wearing earphones and holding a ‘clicker’ for when he hears the sounds. Well, blow me down, he’s only got flipping perfect hearing, hasn’t he? Turns out the toe rag doesn’t have ‘hearing problems’, it’s purely rubbish listening skills he’s got! Little monkey.

Roll on to last week. As I was driving home from Tuesday afternoon school pick up, it suddenly went very bright with that lovely, low winter sun. My vision suddenly developed a shadow that covered the peripheral vision of my right eye. It was so strange. It was like looking through a tube made of cling film, in that I could stil see everything, but it was faded out and darker towards the edges – in one eye! During the evening it got better – until I put on our bright spot lights the next morning and I realised it hadn’t gone, it was just disguised by darker light! So this hung around for a few days and by the weekend was all but gone. Needless to say I booked in for an eye test (which I had today) and Im pleased to say that although I have the medical history of a 98 year old, my eyes have perfectly fine vision! No specs needed here.

Then there was the dentist. I’ve always been very fortunate that teeth and eyes never let me down, but since I was pregnant, I’ve had really sensitive teeth. In fact they just hurt. All the time. Turns out I’ve started grinding my teeth! I’ve worn down the surface of my teeth, causing them to get sensitive. The dentist intimated it is probably stress related (fancy that) and promptly shoved putty into my gob and is arranging a very fetching gum shield for me.

I am the epitome of night time chic, what with a gum shield and my recent insistence of wearing a headscarf in bed to protect my curls a la glamorous pin-up girl style… turns out I can’t pull off pin-up. More shabby chic really…

Do you ever wonder what it’s like to live with anxiety?

Amazing and very personal blog. You’re so brave sharing

Anxiety. Love. Friendship. Life.

Do you ever wonder what it’s like to live with anxiety? I pray you’ll never have too.
Anxiety is something that can never really be understood. By the anxious person or even the friend.
It is never the same. There’s not always a clear rhyme or reason for it. It doesn’t always make any sense. But it’s there and it’s real and it’s ok!

It has taken me years to be able to say that it really is ok.
You kind of learn to accept anxiety as a faithful companion. It doesn’t tend to leave your side but you do learn how to live with it. It makes you stronger, yet more vulnerable. It makes you love harder, yet you feel more unlovable.

I have people ask me what it’s like. “You don’t look like you have anxiety.” Quietly in my head I reply “Phew! I’m glad.” Because I don’t…

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let’s talk about smears

With cervical screenings hitting a 20 year low in the UK, I thought I’d offer my ramblings on the subject.

Having fallen a little behind with mine with being pregnant when I was last due, I plucked up the courage and booked myself in with a (lady) gp (yes, I know most people see a nurse, but I’m not most people and have my reasons for having a gp do it).

Let’s face it, it’s not a nice prospect. Nobody goes along thinking “how lovely, booked myself in for a right little treat, I shall look forward to this”. Nope. It’s blooming embarrassing, slightly uncomfortable/ bordering on painful. Having a cold, plastic implement inserted into you vagina is never going to be a pleasant experience.

But it is quick. And it could just save your life.

That friendly nurse isn’t going to judge you on your choice of socks, compliment you on your fuzz free legs or even notice if you’ve never been to the salon for a ‘tidy up’. Not at all. They have seen it all and in all honesty, won’t even notice. They will just be really pleased you attended.

It’s two minutes. It could save your life. Surely that alone is enough to get you to book yourself in?

Only 4 out of 5 women will get their cervical screening done this year. So ladies, to put it crudely, spread your legs (!) and spread the word.

Check your mates haven’t shoved their reminder letter in their ‘to do’ list and forgotten all about it. Book yourself in today at your usual surgery and get yourself checked. 💞

Baby sleep training. It’s not for the faint of heart

It’s 1.33am as I lie here jotting down notes for this blog and I’ve had around an hours sleep tonight so far. My youngest is currently being taught that breast feeding is not a substitute dummy and mommy cannot continue on a two hourly waking routine.

If got him into bed around 8.30 and spent an hour on my own watching telly, before realising I was too tired to waste precious sleeping time just sitting around enjoying both children being in bed. I was probably asleep by 10pm.

11.18pm my baby woke. He doesn’t do it quietly. There is no gentle rustling of covers, or slow movement of body as he rouses. This boy bellows. From his boots! There’s nothing like being woken with a start. Worse so when it feels like you’ve been asleep hours, to realise it’s probably only been an hour!

So I lie there, disoriented for a few moments, trying to decide whether he will go back to sleep and how I need to play this. I hate the idea of cry it out method, but I’m fairly desperate now and nothing else has worked. I’ve got chronic fatigue, made worse by lack of sleep and these things combined are having an affect on an autoimmune neurological disease I have, called myasthenia gravis (or MG). To cut a long story short, the going in and out of his room over the next hour to comfort him drives him to tantrum point so I just go and lie on my bed and listen to the sobbing, not really having a clue what to do. I want to break his habit of breast feeding to sleep (my own fault as I’ve done it for the easy life whilst I’ve been struggling with the fatigue), but I hate to hear him like this. It’s heart breaking.

1am I go and scoop him out if his cot. Instantly his wailing stops…and I’m greeted with the biggest smile, a little “hmmmpft” noise of triumph as he pulls his head back to look at me and flashes him famous big grin – and I realise I have just successfully been played by my 9 month old. A Bart and Homer Simpson scene is playing in my head, as I’m pretty sure I muttered “ooh, you little bugger” to my grinning baby.

I spend a few minutes stroking his gloriously soft hair, humming the Mary popping lullaby “stay awake” to him, telling him he is going to have to go back to bed and get some sleep, dreading the fact he will instantly cry when I lie him down. I pop the white noise on, set his little light up frog toy in the cot and lie him down on his tummy. He instantly draws to his knees and throws a deafening wail. I straighten down his legs and start to stroke his back and gently rock his body, stroking his hair. He’s finally relaxing and I’ve not had to give in and feed him yet. Don’t get me wrong, I’m not withholding milk from him, I am still night feeding, I just don’t want to do it every two hours. Once (maybe twice) a night should be enough.

1.28am his little body is drifting to sleep. I can hear his breathing slowing, his little chubby fingers stroking his comforter. He’s asleep. I keep out that bedroom like a ninja. I practically glide across that room, avoiding every creaking floor board and gingerly pull open the door that drags on the carpet. I’m gone free and my bed is a cosy, safe haven. But now I can’t get to sleep! 2.24am is the last time I look at my clock and I’m awake some time after this point, but the baby sleeps…

He woke, all smiles at 7.50!

Let’s just stop pretending our kids are perfect. They are, in fact, little rotters.

If you know me, you know I enjoy using social media. It helps me stay connected with friends and family around the world, snapshot special moments and generally just be a little nosey (admit it, you all do it!).

I love seeing other people’s children, the development as they grow, the many achievements and even the dreaded start of year obligatory new school uniform photos.

I love announcements – babies, engagements, weddings… I’m right there celebrating with you. I really enjoy your weight loss and fitness journeys, high-fiving your weekly lb loss and extra few seconds you knock off your run or add to your distance. Good grief, I even like your food photos and shots of your mugs as you enjoy your daily brew.

But the one thing that really cheeses me off? Pretending you have a perfect child. Seriously.

Yes, yes I get it we are super proud of our tiddleywinks. I love every milestone mine get to, and have the photos (and Facebook posts!) to prove it. But children are not perfect. In fact, most of the time they are little rotters.

For example. This morning I got up late. Shocker. I’ve got a baby that wakes every two hours (you lot who have sleepers, I’m so jealous I don’t even know if we can be friends). Today is my first solo school morning since before Christmas as my husband went back to work today and has done the last two mornings school run for me. I hate morning school runs. Nothing leaves me in a bad mood and screaming like a fishwife like a solo school morning.

So there I am, flying out of bed 30 minutes late, tearing down the stairs yelling for my oldest child to get up. He’s so fast asleep he doesn’t hear me. I’m in the kitchen now, throwing bread at the toaster, kettle goes on and I’m yelling “come on Joe, we’re going to be late”. Nothing.

Tea is made, toast is buttered, baby has marmalade of toast thrown at him in his high chair. “JOSEPH! GET UPPPPP!” *Sleepy head appears at the top of the stairs. “What’s up Mom, I’m sleepy”. Grr.

Anyway, I race the baby upstairs. He now needs a bath as marmalade is in his hair, down his ears, up to his elbows so I do a ‘mini bath’ in the bathroom sink. I have to shower the oldest as I stupidly decided I was too tired last night to do anything so hadn’t bothered putting him in the bath. Can not tell you how much I regretted that at this point. Baby is dried and lying on the floor in the boys bedroom. I turn my back for about two seconds to grab a clean nappy and I the minuscule amount of time he has rolled over, stood up against the bed… and poo’d on the carpet!Flipping poo’d! No warning. None of the usual grunting and winding up, just noiselessly gone about his morning business on the carpet!

More yelling ensues as I bark orders for the other boy child to grab sanitising wipes as I now have to clean the carpet. I then dump the poo covered baby in the (empty) bath so I can refill the sink to re-bath him. I’m not even dressed at this point and I’ve now got to clean a carpet and a bathroom. Through all of this, my happy little chappy is cooing and smiling at me, totally unaware we are certainly anything but friends.

This is the truth. Warts and all and I’m sharing it in social media because I just know that some of you will find it funny and hopefully some of you will laugh about this. Kids are great. And I’m fairly sure it’s the poo stories, the temper tantrum stories and the getting covered in vomit stories we’ll carry with us into our old age and not the ones where we bought them this or took them there… this, yes THIS is real life with kids.

Oh and I did get to school on time. My car wouldn’t start first time and I did consider having a mini melt down, but since then I’ve eaten cake, and my world is rosy again. I will never take for granted those mornings Mr M sorts the biggest boy out and takes him to school. Never.

Now please excuse me as I have to dash off and go and get a clean top on. My perfect little cherub has just thrown up all over me and it’s time to leave the house to collect the biggest boy from school. Here we go again.