My neck lump journey
and yes, there's lots of pictures!
I've mentioned in a previous post that I've experienced quite the bought of sickness over the past two years. One thing after the other and at times I've felt so overwhelmed and out of control over my own body, my own health. It has been a frustrating journey but it seems its finally coming to an end.
The funny thing about being sick for a long time is that your body seems to put itself in a cycle where everything is kinda causing everything, a vicious cycle and its hard to tell what the true catalyst is but I'll start from the start...
Around June last year I suddenly couldn't get out of bed. Like i really, REALLY couldn't get out of bed. I had no energy and it wasn't just my body that was tired it was my mind too. 2 weeks later I developed flu symptoms and had a particularly swollen throat. I was told that it was a virus and that my body just needed time to fight it. 3 weeks later I was told that I had a throat infection and was given antibiotics. The antibiotics did nothing but add thrush to the mix which was really fun (i was so exhausted it took me 2 days to muster up the energy to go get the cream and by then the discomfort was unimaginable that i was basically just whimpering in bed all day)
I couldn't physically get out of bed till around 2pm, my partner at the time gave me shit for being lazy at the start saying that I would be in the same position in bed when he left for work and when he got home most days. I was bullied out of my job for under-performing during this time, dropped from assistant manager to a casual and then given no shifts. I was also starting to fail most of my units through university because i was missing a lot of class and couldn't mentally keep up. I couldn't read, I couldn't think clearly, My mind felt so cloudy. I went back to the doctors and asked for a blood test and they found that I had had glandular fever. I was equally relieved that I had a diagnosis that validated that I wasn't being just a lazy piece of shit and annoyed that I had to be the one to ask for the test to get that diagnosis!
By around week 6 the flu symptoms were gone but I was still always so tired and I literally felt like i had brain damage, i still couldnt think clearly. I was told that I likely had chronic fatigue as a residual side effect and that this could last for around 2 years!
Energy drinks were the only thing that seemed to perk up my mind so i would have one on my way to each class so that i could concentrate and by late afternoon i would crash HARD. some days were better than others and I kinda felt like i could feel myself improving around the 8 week mark (so 2 months of feeling like shit)
but I got sick again, just a normal virus but you know how shit just having a virus can be right? had that for 2 weeks and then I was fine for a week and then I had another. I ended up with at least 2 viruses every month until late March this year. I had been into the doctors several times and they kept telling me there was nothing I could do, my body just had to fight it off and that maybe I should exercise to try to help my immune system...meanwhile they were telling me not to exercise while I was actually sick and there weren't many days in-between when I could. It had been 10 months of on again off again on again sickness and my "swollen glands" in the right side of my neck had not gone back down once over all this time. I asked about that and I was told it was nothing. I would show my friends like "look at this, can u see how big this is? isnt that weird" but they could hardly see it and noone wanted to feel haha
Anyway it had grown during all this, slowly a few people started to notice but only if i pointed it out. I went to the doctors again, they seemed to care this time, maybe having a strawberry sized gland for 10 fkn months WAS STRANGE!? ...they ordered an ultrasound, I had the ultrasound. I got a call a mere few days later where they asked me to come in asap for a biopsy. I had the biopsy, 4 needles in my neck while i hung my head off a bed, they told me that what they extracted would just look like normal boring blood when i asked beforehand but after they needed to use bigger thicker needles, they pulled out some feral ass shit that did not look like normal boring blood...so I got my picture ;)
(and they began to worry)
A week later they told me that preliminary tests were good and it looked like it wasn't cancer, however i would have to wait a month or two for some further tests to be completed. They never got back to me and it grew more, I got another ultrasound and the doctor I had this time said it was probably just a cyst and that it would be fine, no need to remove it or drain it or anything. (i seriously regret not not getting this doctors name because my surgery ended up being alot more serious than it needed to be and I did NEED it out)
I ended up falling pregnant late July and my body could not handle everything that was happening. My fatigue got worse, I had food aversions to EVERYTHING, intense bloating that made it uncomfortable to even stand aaaaaaand i got the flu -_- everything hurt. This was an unplanned pregnancy to a man I had recently broken up with. Many psychosocial and physiological reasons led me to decide to terminate. A big reason being that my body felt poisonous, my lump almost doubled in size due to everything being so chaotic and if i were to continue with the pregnancy I would of needed to do some pretty serious genetic testing due to the genetic disorder in my family. This was all too much stress on me physically and mentally and while the father was supportive he didn't fully meet my needs and i was too tired to take on more in my life at that time. (ill probably do a separate post later to address this part in more detail)
In August, while recovering from the termination in surgery, guess what?! I.GOT.SICK.AGAIN.
I took myself to the doctors for what felt like the thousandth time. The doctor I saw this time, like all the before her said i had a virus BUT when she looked in my throat this time she was worried because the lump from my neck had grown so big that it was starting to push into it. She ordered another ultrasound and referred me to an ear, nose and throat specialist.
It was a three week wait and it cost $480 which i definitely didn't have spare and laying around, I considered cancelling it but my mum convinced me that it was necessary for my health and gave me $80 towards it. He touched it, asked a bunch of questions, shoved numbing spray up for nose and gave me an endoscopy. Diagnosis: a branchial cleft cyst.
It had to come out and I signed papers to go onto the waiting list for the excision. He said it was likely to continue growing everytime I got sick so that I should try to stay as healthy as possible because the public wait list could take up to a year and that my cyst was already incredibly big. I was placed as a 2 for priority and he ran through a few of the risks. there's a number of important nerves in and around the neck and jaw, there was a small risk of damage to some nerves that controlled shoulder movement, corner of the mouth and the tongue and cheek.
I left this appointment somewhat relieved that i was getting somewhere, I had a proper diagnosis and I was on the waiting list but knowing nothing was really about to fix it for months I felt very overwhelmed and had a bit of a breakdown. I went to see my ex and had a cry and tried to explain how out of control i felt over my own body( he had been there and seen all of this happen). The camera they shoved up my nose was invasive and super uncomfortable and I paid $480 for that discomfort and a general wait time for the real action. I had gotten good at hiding it but I felt shit all the time, it weighed on my neck, felt like my throat was constantly swollen and closing up and i was pretty sure it was making me sick.
While I am insanely appreciative of the public health care we have here in Australia and loved the convenience and virtually free healthcare of the walk in medical clinic i was using I have learnt a MASSIVE lesson from the year and a half of fucking around. My health is worth paying for. I should have a regular GP who knows me and therefore cares about whats happening because this would have been diagnosed and dealt with ALOT SOONER.
Mid November my surgery date was booked for December!!!! and so, I'm finishing this up on my last full day of having this cyst because my surgery is tomorrow!!!
I'm a little bit scared and a little bit excited but mostly it feels like I'll be able to take a deep breath soon physically and mentally...Its been a tiring journey and I cant wait to start healing and become the healthy, happy person i'm meant to be.
I will be writing a post that will be more in-depth on what a branchial cleft cyst is and how my surgery went (with some gross pics yay) in a few days!
Please upvote, comment and share your fucked up lumps!
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