Round Three!

Hello strangers. It’s been a while since I even thought about this page and my previous blogs, let alone write a new post!

Turns out, I have another neck lump, which quite frankly, you could call third time unlucky, right?

Today, I’ve revisited my previous blog posts which detailed my two previous surgeries and I’m overwhelmed by the number of comments and messages from strangers, who, like me have found themselves with a mysterious lump called a thyroglossal duct cyst.

On logging back into this account – and yes, after resetting my password after three years away – I’ve been welcomed with many comments from across the world from people going through the same thing as me: asking about the prognosis; thanking me for putting medical jargon into layman’s terms; enquiring as to how I am and what the scarring is like; wishing me well. I only wish I’d logged back on sooner, to have a reminder that we’re all human, we’re all in this together, and a blog post, comment or smile from a stranger can feel like a light in the dark when it’s a scary or uncertain time in your life. Something I think all of us need after the 18 months we’ve had in the worldwide pandemic.

So, my new lump you may be asking? Well, it turns out this one is a ‘branchial cleft cyst’ (a further post to follow on the detail of what that actually means).

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Branchial Cleft Cyst swelling on the right (or wrong?) side of my neck

I noticed a swelling appear out of the blue on the side of my neck a couple of weeks ago, driving back from my first trip away in 12 months with my fiancé. We’d spent some time in London, the busiest palace I’ve been since March 2020 and I immediately thought ‘oh God, I’ve caught Covid’ and on arriving back home we both took lateral flow tests, which thankfully were negative. The lump was painless, hard and about 1cm beneath my ear and to the side of my jaw. The other thought, after much Googling, was that I may have mumps, however I had no symptoms – in general I felt well. I tried everything I could find online to make the lump go down, hot compresses, cold compresses, eating lemon ice cream in the hope it may be a blocked salivary gland and that the the lemon taste would set them into overdrive and the blockage would, hey presto, dislodge. But unfortunate no such luck.

With my history, and the fact the lump was painless, I called my GP first thing on the Monday morning and by 8.45am had been given a referral appointment to an Ear, Nose and Throat (ENT) fast track clinic. As you can imagine, with anything like this when you find a lump, it’s a tense wait to see a specialist, but luckily I only had to endure it for nine days!

The specialist appointment with my consultant was actually a lot less stressful that the first time I had to attend an appointment like it – maybe because I knew what to expect. I had a needle aspiration of the lump (I had to apologise several times to the nurse who had the job of holding my hand), and my consultant is 95% certain it’s a branchial cleft cyst. The green/brown gunk which was taken out of the cyst has been sent off for checks, and I’m now waiting for surgery.

I’ll do my best to keep updates of my journey over the next few weeks on this page, but for now, a few words of advice if you find yourself with a lump, bump, or something that just doesn’t feel normal:

• Get checked. You know your body, you know what right, what’s normal, and what’s not. Honestly, if you think something isn’t quite right, get a medical opinion.
• Don’t Google Diagnose. Leave it to the experts. Those sneaky little rabbit holes you’ll find yourselves down won’t help. Keep an open mind, take a breath and deal with the facts in front of you.
• You got this. I promise, you do.

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24 hours on, and I’ve been debating whether to write an update, but hoping that in writing this I get a couple of things off my chest. This morning I was groggy and upset at my scar in comparison to my first surgery, but with the help of some cocodamol I’m feeling a little perkier and more positive this afternoon!

Close family and friends will already know that I came home from hospital yesterday, less than two hours of being brought round from my surgery. This was due to a successful operation, no drain (what a relief) and I imagine others who were in need of a bed more than myself, who has a wonderful family to look out for  and monitor me over the hours that followed. Much of yesterday was falling in and out of sleep, and eating very small mouthfuls of my Go-to Feeling Sorry for Myself food, tinned chicken in white sauce (with cheese, of course). The bone they removed yesterday is attached to the tongue, hence the small mouthfuls and lots of soft foods in the coming days

Again, I must praise our amazing NHS. They are angels in nurses uniforms. A thousand thank yous go to Joanne who admitted me yesterday, and called my mum (against usual protocol) to let her know I had come round and that I was on a different ward than expected, after mum had been calling different wards to find out if I was out, with no prevail. Anne, who took me down to theatre, asked me about my life and was there when I woke up to give me blankets, toast and tea. The anesthetics team: my anethatist for making sure I had a cocktail of pain relief and antisickness meds before coming round, ensuring that this time I wasn’t nauseous; Phil and another nurse, whose name I unfortunately can’t remember, but the both of them were marvellous when talking to me about future holidays (I told them I’d someday get to Barbados) and telling me they were there to hold my hand and that they’d be with me throughout the operation; the student nurse who inserted my canular – you will make a wonderful nurse when you ‘finally’ qualify, as you put it!

Yesterday was full of emotion, and I am sure there will be plenty of emotion to come. The main reason for this is still frustration and disappointment that my first procedure was unsuccessful. Since the recurrence of my cyst there has been many meetings with healthcare professionals and feelings in my gut that have made me feel that something just wasn’t right the first time. Firstly, not being told imidiately after surgery, or at the discharge consultation that followed a few weeks later, that I hadn’t had the hyoid bone removed as expected, and that my cyst was ‘dermoid’ rather than a thyroglossal duct cyst. Secondly, at my recent ultrasound when I was told ‘it’s displaying as a thyroglossal duct cyst’. Thirdly, on seeing a different consultant who told me my ‘new’ cyst was in a different position this time round, higher in my neck than previously – it wasn’t, and it never has been, which may explain why this new scar I will bare is much higher in my neck than last time. And lastly, yesterday whilst waiting for my anethatist in the prep room outside theatre, when my surgeon told me he’d once again looked at my MRI scan which was conducted prior to my first surgery in the November of 2016. He informed me that on that scan the cyst looked like a thyroglossal duct cyst, but only this time was it confirmed.

Something just didn’t feel right, and in hindsight maybe the reason for my fairly speedy recovery and neat scar was due to them potentially entering my neck lower than the where the cyst actually was, and because they hadn’t removed the bone.

Anyway, what’s done is done, and my emotions about the situation will fade in time, as I hope my new war wound will.

I documented my recovery after my first surgery, and I intend to do the same now, but please feel free to look away if you’re at all squeamish or are about to tuck into your dinner.

For now, tea. Where there is tea, there is hope.

4 hours post surgery

As a little girl, when I’d fall off my Barbie bike and graze my knee, Dad would tell me to be ‘Big and Brave’.

Today I’m adopting that mantra again.

See you on the flip side!

Just over 15 months ago, to my relief, my thyroglossal duct cyst, which had caused much worry and concern was removed. Or so I thought.

Today I’ve decided to revisit my blog, entitled ‘My Thyroglossal Duct Cyst and Me’ to write about it’s recurrence, which became apparent in late October.

After surgery in December 2016 my neck began to heal remarkably well. I didn’t need a drain, or an overnight stay in hospital, and by Christmas Day (just 12 days after surgery) the glue holding my wound together began to peel away, leaving a neat, albeit pink line behind.

Over the course of 2017, with the help from Bio Oil my scar became almost non existent, only flaring red on the rare occasion I was hot and bothered. I even managed to enjoy sunbathing in Las Vegas in April with the help of a large straw hat, under the instruction of my surgeon to keep the scar tissue out of the sun for 12 months.

Unfortunately in September I had a prolonged bout of tonsillitis, which subsided after a course of antibiotics. Shortly afterwards, I realised a small lump had appeared in the midline of my neck. Slowly, over the course of a few weeks it began to grow. I thought I was going mad. No, I wasn’t, and my mum confirmed that a lump had definitely appeared. Back to the GP I went.

On January 4th 2018, 8 weeks after my second referral, two GP appointments, another course of antibiotics and a close call with a potential rupture of the lump over Christmas, I was back at the ENT clinic at Calderdale Royal Hospital to see my consultant.

Now, I believe NHS staff do a fantastic job with the resource they have, and treated me with love and respect in a way I never realised a stranger could during my surgery in 2016. However, for me this specific experience at the ENT clinic left me very frustrated and disheartened.

Firstly, I was ‘greeted’ by unwelcoming reception staff where I was left feeling like my queries were an inconvenience. Thankfully, I was not as scared as my first referal in 2016 when we feared the ‘C word’, however had I been feeling vulnerable this reaction from staff would have only made me feel worse.

Although I had changed my appointment so I was able to see the surgeon who had performed my operation, I was told he didn’t need to see me, and instead was seen by his registrar, who after an hour and a half wait to see him made me feel like I was wasting his time (as the lump had reduced in size considerably after my recent course of antibiotics) and told me I would be sent for an ultrasound… in 3 months time. Now, for those of you who know me, you can imagine my reaction, and the nurse on duty kindly offered to speak to my original surgeon for me – who on seeing me in the corridor asked me to go into his consultation room.

Needless to say, I did not expect what he told me next. After looking through my notes, he went on to tell me that it was likely that I hadn’t originally had a thyroglossal duct cyst, and that in my first operation my hyoid bone had not been removed – a procedure that reduces recurrence of the cyst to 5%. I had never been told this, neither prior to the operation or in my consultation 3 weeks after my surgery. I had such a mixture of emotions. Confusion; had I missed something at my discharge consultation? Anger; was this the reason the lump was back? Upset; would I need more surgery?

After feeling my neck and viewing serval photos I had taken in order to document the growth and subsequent shrinking of the cyst, he placed me on the ‘urgent’ list for an ultrasound, and indicated that this new growth may in fact be a thyroglossal duct cyst after all.

I had an ultrasound to confirm the ‘new’ cyst and a tract which branches very close to the surface of my skin (increasing the risk of rupture), and to revisit another cyst on the side of my neck which was discovered in 2016 but is likely to be harmless. Within the week I saw my consultant again, who explained my treatment plan, which is to have a further surgery to remove the newly discovered cyst, the hyoid bone to reduce recurrence and some exploratory surgery to ensure all branches of the tissue are removed.

I have since had a pre-op and further blood tests ready for my operation. Now, on Monday 19th March instead of starting my new role at work, I’ll be having surgery for the second time. Let’s hope this is the last.

 

 

Yesterday was not a good day on the cyst front. I started feeling unwell on Monday due to the pressure in my neck as the cyst has been growing. By mid afternoon I was feeling much brighter and ready to class it as a blip and crack on getting ready for my operation, now scheduled for next week.

Yesterday was not so good and I’d developed and infection. The area just kept getting bigger and hotter and I can’t remember the last time I felt so sick. I started on antibiotics and slept lots, and kept a cold compress on the area. Luckily this afternoon I’ve been feeling much better, and the rest and meds have definitely been working. T minus 7 days.

A Week On

Unfortunately I haven’t written every day I would have liked to this week. But as they say, better late than never!

Monday and Tuesday were a little rough… Rather than showing an improvement, my neck was getting increasingly swollen and quite red at times. It seemed to be huge on the left hand side, from my chin to just above the incision site. You might think why was it so swollen above where the surgeon made the incision? This is because two layers of tissue below the skin that are cut through before getting the the cyst and the hyoid bone, and these lie almost directly below the chin, just off centre.

I count myself lucky with the minimal bruising I have experienced. Due to the nature of the incision, the wound has to be stretched open and held with clips throughout the surgery (imagine surgical salad tongs) and I have seen images where people have horrendous bruising afterwards. I’m talking black and blue skin, so you can see why I’ve been pretty impressed with my body’s reaction – I usually bruise like a peach.

I also had to take codeine again for the pain, something I don’t intend to do again anytime soon, as I could barely hold a conversation on Monday evening when Liam returned home from work.

I was also back on what I have affectionately named ‘The Sistrunk Diet’. Soft foods galore. On the upside of my op, I’ve lost 7lbs in as many days, so realistic my I’ve lost the weight I would have no doubt put on by Boxing Day. Every cloud and all that.

Wednesday, however, was better than earlier in the week, although I was still a little tired! Dad made me porridge for breakfast which got the day off to a good start. I finished some final Christmas chores, including buying that vital smoked salmon and a bottle of Raspberry Belgian beer for Christmas Day. Unfortunately the centre of the incision site bled a little in the evening, but this is probably because it got caught on the high neck jumper I was wearing.

Thursday was very much the same. It consisted of me not doing very much in particular, but the swelling was going down. Rather than my whole left side being swollen, it was more localised to where I imagine they damaged the majority of the tissue to remove the cyst. It was still a distinctive lump, and still red, but the swelling was visibly going down which could only be a positive.

Friday has been the best day yet. I’m still on painkillers, but as I write this I feel so much happier about how my neck both feels and looks. I can’t believe the improvement compared to 5 days ago! The image I have included in this post shows my progress from Monday morning through to Friday night. I’m going into the Christmas weekend a very happy bunny. 

So, What Is A Thyroglossal Duct Cyst?

I thought I best expand on what a Thyrogloassal Duct Cyst actually is, as there is a lot of medical jargon out there if anyone decides to Google it.

It’s something I had never heard of before it was mentioned to me by my G.P. and consultant after my first few tests. A Thyroglossal Duct Cyst is a congenital cyst, which develops between 5-8 weeks of gestation. I have been asking mum what the hell she was drinking at Christmas in 1993.

Anyhow, during this stage of development, the thyroid moves to the place it will permanently stay (above what will later develop as the collar bone). However, in some cases the tube does not fully reach the final place it should, meaning it often runs from the back of the tongue dow to the thyroid, and forms a pocket, or a ‘duct’. It is when this duct gets infected, or grows, or becomes filled with fluid, that it becomes noticeable, often through a lump appearing on the outside of the neck or in some cases due to it pressing on the windpipe.

Thyroglossal Duct Cysts are thought to be present in 7% of the population, and accounts for 2% of neck masses in adults. They usually become apparent during childhood, but in some cases, like mine, they don’t become apparent until adulthood. In 1 in every 100 cases, Thyroglossal Duct Cysts are cancerous, which is why I was referred and seen by specialists so quickly, particularly as ectopic thyroid tissue was suspected inside the cyst (tissue where it shouldn’t have been). Biopsies are the norm during diagnosis, but as in my case, many biopsies are inconclusive and cancerous cells cannot be distinguished, meaning the cyst is removed anyway.

As mentioned in another blog post, I put my cyst down to being under the weather and my glands becoming sore and swollen. I now realise this wasn’t the case at all. The cyst was a distinctive, hard, ball located right at the front of my neck.

During my diagnosis, there was a common misconception that the type of cyst I had was nothing to worry about, and that it was a small lump on the surface of my skin that would only need to be removed for cosmetic reasons. Even my dad said it would be something to do with the stress of starting a new job and my busy lifestyle. I don’t quite think some people understood how concerned I was about it, and that it’s removal wasn’t as simple as extracting a superficial lump just below the skin. I know many people probably said this to just make me feel better, even though inside I was really quite scared.

My mum was actually the person who I felt was the most supportive. Of course it was unlikely to be cancer, but I wanted to talk about it, and look at the options if it was a ‘worse case scenario’. My Nana was also very supportive. She was diagnosed with cancer in March this year, and also had cancer in her jaw in childhood. She knew how I felt, and that the uncertainty was the worst part, and actually, being repeatedly told ‘it will be fine’ is not always the most constructive answer that you want to hear.

Diagram of the neck, with structures involved in a Thyroglossal Duct Cyst. Image taken from London North West Healthcare NHS Trust.

In fact, the surgery I would need to remove it, and any possibility of cancer was a two hour procedure, taking out not only the cyst, but surrounding tissue and part of my hyoid bone (the bone connected the my tongue). This is know as the Sistrunk Procedure.

I didn’t have to have the procedure done, but can you imagine thinking for the rest of your life’what if?’.

Click here for more information on Thyroglossal Duct Cysts from the NHS, which may explain it better than I have!

Day Five. Sunday.

I started the day waking up late, yes even on a Sunday,  after a pretty shoddy nights sleep. My neck felt similar to the night before, but it wasn’t anymore swollen, so I took this as a positive. My car was still at mum and dad’s (a 30 minute drive away), so we decided that Liam would drop me at the Sainsbury’s in Halifax on his way to work, and mum would collect me from there. I browsed the clothes, as I was desperate for a new pair of jeans after splitting my others the previous week. I blame poor quality denim, rather than the fact the you can see the affects of working a desk job for a food retailer and getting free samples (mainly cake).

Anyway, Sainsbury’s was NOT a good idea. Half way round I was sweating, and generally feeling hot, bothered, and like the scarf I had worn to cover my neck was choking me. It wasn’t long before I called mum and asked her to collect me as soon as possible. I waited for her on those seats everyone thinks are put out for old people waiting for their lift. Well, on Sunday I was one of those old people. It was a struggle to carry the two bags I had with me, and in hindsight it wasn’t one of my best ideas to try heavy lifting just days after my op.

Outside vs Inside. Inside was suffering.

After a hot start to the day, I enjoyed a lovely afternoon with my family at our annual Nine Lessons and Carols get-together (where mum sings in the church choir). This mainly compromises nibbles and nattering before heading down to church to get us all feeling festive.

Lesson learnt – Singing at the top of your lungs to Hark the Herald Angels is not the best remedy after having a lump cut out from the back of your tongue, and an incision made near your voice box.

The neck decided to get fatter. Again, I went to bed feeling groggy and was again taking codeine. 

Recovery Day Four. Saturday.

I felt okay. My neck looked and felt pretty much the same as it had since my operation, and I could eat normal food. I cleaned the chickens out with Liam, and we decided to spend the afternoon at the cinema seeing Sully: Miracle on the Hudson (great film – go see it!). It wasn’t until about 9pm that I began to feel rough. My neck started to feel quite hot, and I felt very tired, but struggled to sleep. Unfortunately, we had forgotten to buy milk or painkillers on the way home, so I put up with a herbal tea and two paracetamol I rummaged around for in the bottom of my handbag.

Lesson learnt – although you might look like you’re on the mend on the outside, actually your body still needs time to recover on the inside.

I also looked back at some old Instagram posts, and found an photo of me in October 2015, after just having my hair dyed (captioned ‘feeling very blonde’). It just so happens I am also wearing the same jumper as I was on Saturday. Just look at my neck. *Sobs*

Post-op Day 4, 17/12/2016.

Today has been a good day.

I woke up feeling very, very sore. However, I have kept dosed up with paracetamol and ibuprofen all day, and it seems to be doing the trick. I have tried to refrain from taking the codeine I have been prescribed unless I really need to – I’m not keen on how drowzy it makes me, even though I put my good sleep down to this on Wednesday night!

I managed a shower today, and washed my hair (yippee!) Anyone who knows me well, knows that I wash my hair everyday, so I’ve had to resort to dry shampoo the past couple of days and a hand from mum on Wednesday evening washing it over the side of the bath. We wrapped my neck in clingfilm and duct tape to try and avoid getting the wound wet. It’s a great look, you should try it.

One thing I have noticed today is that some of my neck is very numb. This is because nerves have been damaged from the incisions made in tissues during the operation. From what I have read, I don’t expect the feeling to come back for a good few months.

I received beautiful flowers and a ‘Get Well’ balloon today from my team at work. I was also sent a beautiful bunch from the Jocelyn’s (thank you Nick, Liz, Amelie, Isabelle, Verity and Lee!), which include chrysanthemums, my favourite. Another lovely surprise was a card signed individually by my fellow grads at work. All of which have put a huge smile on my face today.

My wound looks very similar to yesterday, but maybe a little more bruised. I don’t expect to seen any rapid improvement in the healing process, but at least for now it’s not too gruesome. I’m still having trouble bending down and lifting things (prime example is the dog), and at times feel like I need a neck brace to support my head. I’ve found a great fix for this is a nest of cushions to prop me up on the sofa.

For the record though, I still look grey.