I don’t know where to start with what to say really, this has all been going on for about two months and right when I get some sort of diagnosis, they remind you that until they take it out and send it for testing, it’s still classed as “suspicious”. Which just makes me feel like I’m back to where I first started, not knowing what’s going on.
I have a vlog up on youtube that you can watch if you prefer as I talk a bit more in-depth on the video (when I’ve only just woken up too so I’m looking rather lovely) but for anyone who prefers it, I’ll talk you through my story.
I was at work one day, at the very very end of May. I was sat in the staff room and a member of staff, who I like and get along comes in and we start chatting away. We’re at an angle to each other because of the tables, and during conversation, they look at me and say “have you ever had problems with your thyroid at all?”
..this is the point at which I quite taken aback.
I just though they were joking, but what they were basically saying is that my throat looked a little swollen. This seemed to come from a place of concern from them, and as nice and they were about it, I got quite self conscious (as I’m sure any girl would). We finished chatting and I went in the ladies staff room to put my stuff away and had a cheeky look in the mirror, and saw that my neck did look swollen, something I had never noticed before. I basically told my boyfriend straight away via text (He is called Elliot for anyone who doesn’t know) and he was really calm, he said he hadn’t noticed anything but that we’d book a doctors appointment right away.
I also went home and cried a bit to my mum about it over the phone. Obviously having thyroid issues isn’t good (it can make you depressed, overweight and tired) but it was the fact that I hadn’t even noticed something on my own body that was getting me down. I felt a bit stupid for not noticing, this is MY body and I didn’t even notice when something isn’t right.
By some miracle, I managed to get a doctors appointment that week. But by that point, I had convinced myself the doctor would say it was just a bug bite or my glands were swollen cause I was ill. I didn’t want to have thyroid issues so by the time I saw the doctor I was convinced that they would say everything was fine. I felt quite shocked when she immediately said that she thought it was my thyroid. Now this bit gets a bit confusing. She told me that she needed me to get a blood test, as they would check my thyroid function levels to see whether my thyroid was under or overactive. I booked myself in for that blood test on the following Friday. However before that, I got a letter from the doctor saying that she read up on the thyroid guidelines and that she needed to refer me to the specialist, something that I thought would only happen once my blood test came back. So I had the blood test on the Friday and booked in for a phone call with her the following Friday for the results, and the following Tuesday after the phone call, I had an appointment at the hospital to see the specialist. This bit seems like it happened quite quickly as there wasn’t much wait between the appointments.
So the Friday I get the results, I’m at work and have to pop off to the staffroom to wait for the phone call, at this point I’m quite nervous. She called and there’s the bit where they have to ask how you are etc. Then she says about the blood test, and that it came back normal. So at this point, we know my neck where my thyroid is, is swollen but my thyroid is functioning normally.
I’m quite annoyed at this point, but everyone’s saying it’s a good thing. I wasn’t convinced it was (for good reason) as at that point, I had an unexplained swelling.
The hospital appointment was the following Tuesday from this, so not very long to wait at all. It also happened to be my day off and my dad was happy to take me as Elliot was at work and I cannot drive (wouldn’t have wanted to go alone either).
The letter that came before the appointment, basically says you’ll have a chat with the specialist, where they’d ask all your family history etc and you’ll also have an ultrasound and if they decide to, something thats called a Fine Needle Aspiration. Where they take cells out of the swollen area (thyroid). This letter actually got me quite worried as at the end of it, it talks a bit about cancer.
Anyway, nervous me and my dad go to the appointment and we wait for a bit, go in and chat to the specialist. She confirms what the doctor said, basically that I have a goitre (a medical term for what it is but a word that I actually hate so will generally refer to it as a swelling), she also turns the screen to show me my blood test results (although I have no idea what I’m looking at) and says that although they are “normal” they are on the higher end of normal, and that she’d like me to have another blood test in about a months time to see if there was any change. She also wants to go ahead with the ultrasound however, there was no one there to do it so I’d have to come back another day.
So we leave the hospital, and again, I’m a bit annoyed. I felt like I’ve only gone in for a chat and nothing had been sorted out. I then had to wait for another letter to come though, saying when I can have the scan.
Again, everyone was saying that it was a good thing and that it could still be something as simple as me having an underachieve thyroid but it’s just not showing up yet. By this point too, my neck is really annoying me. I felt the swelling (although it hadn’t changed size or anything) was huge and so noticeable. It being the middle of June, I was only wearing jumpers and was SO self conscious. I also had my brothers wedding to go to and wasn’t very happy that I was going to be going with a swollen neck. I know this could seem very “first world problems” but it did really effect me. I was really down about it and I didn’t want to see anyone or go anywhere.
It was about a month between the appointments. The letter came quite quickly so I knew when I had to go to the second appointment, however instead of being a thyroid clinic appointment again, it was just an ultrasound appointment. Again, Elliot said he’d take me but I didn’t want him taking time off of work for something that could be nothing. And again, I was so convinced that I’d go into that appointment and just have the ultrasound, no fine needle aspiration for me.
During the ultrasound, when she said to her colleague that she’d need to do it, I basically started crying there and then and didn’t stop. The procedure wasn’t that bad, you lay down so you can’t see any needles and once the anapaestic is in, you can’t feel anything. I was crying because the main reason they do the procedure is to detect cancer cells. The nurses were really lovely and allowed my dad into the room during it so he could hold my hand and chat to me, something they don’t normally do but I don’ think I could have done it without him there. I don’t think they were prepared for how upset I was either.
I left feeling still teary, with a numb and still swollen neck.
It was about a week later when the specialist called me, I was expecting her call, but it was a lot quicker than I thought. I was in the staffroom after just finishing work, and wasn’t really that prepared (but I’m so glad that Elliot was waiting for me). She didn’t really say too much on the phone, probably not wanting to upset me but mainly just because she felt she couldn’t, as they couldn’t say for certain what is going on. Something that did stick with me is her words:
“Something nasty is going on here”
I’m not sure why that stuck with me but it did. And now, It’s the main thing I can remember from the call. She also said I’d need treatment and surgery, so from that point I knew it was Cancer. I obviously told Elliot and we went straight round my parents and told them and then around to his mums. She had no clue any of this was going on so it must have been quite a shock but I just didn’t want my whole life to be defined by what was going on. I didn’t not tell her cause I didn’t want her knowing, but up until that point we didn’t know what it was and I didn’t want it to be the focus of all my conversations. It was my way of keeping it quiet until we need for certain what was going on.
During this whole time, whether it was intentional or not, no one really used the word Cancer. It was only when the surgeons receptionist called, saying he had a cancellation and that I could be seen that same week for a consultation that everyone started to get more comfortable talking about it. I think this was a good thing as as soon as we got to the hospital and found where to go, we found that we were in the cancer clinic. Even going into the consultation with him, it was then that someone said (either my boyfriend or my dad as they were both with me, but this now seems a blur so I can’t remember who said it) “Are you sure it’s Cancer?” and he, without saying too much, basically said yes.
Meeting with him did help, although hearing about the surgery that I needed was a shock. Six hours is a long time to be in surgery and hearing about the hospital stay and having to have drains in my neck for a few days after the surgery was again, quite a shock I suppose. I’ve never had any surgery, never stayed in hospital before either. I’m one of those people that have never even broken a bone.
So, as you can see, that all happened quite quickly. After meeting with him I also met with someone who works for the NHS, she’s basically a social worker and everyone who has a cancer diagnosis has one. I then had to go and basically book myself in for the surgery as there’s various tests that needed to be done. I also had some blood taken to get tested again.
And now it’s just a waiting game, there’s nothing I can do at the moment. I have to have another consultation with the hospital staff, it’s something that has to happen pre surgery. I’ve been told I also have to have a CT scan, another ultrasound and another Fine needle Aspiration. So I have to wait for the letter to come through saying when that is going to happen.
After finding out about the surgery, My boyfriend and I made the decision to move back into my parents house, something which was incredibly hard to decide to do but we both know it’s for the best. We got to the end of our lease and I need looking after after the surgery and it would be difficult if I wasn’t living with them. I’ve also resigned from work, as it was the last thing on my mind as soon as I got this diagnosis. I could have just taken leave, or gone sick. But the money wasn’t worth it and the job wasn’t worth it. Generally speaking I would need to have about 12 weeks off, this could be longer and I don’t want work to be at the back of my mind. I worked in retail, and there’s always retail jobs.
I also have a life to life, I have my best friends hen do and wedding coming up and I cannot miss it for the world so I’m either going to have a hell of a scar or have to have surgery pretty soon after.
As much as I want to have this surgery and cannot wait for it to happen and for this thing to be out my neck, I’m so incredibly nervous. This is a really scary time and I’m so thankful I have such a strong family and friends as they have really been my rock. I keep having little outbursts of tears and I’m so lucky that Elliot has been by my side throughout all of this.
I was in two minds about sharing this, I even asked on twitter and instagram for advice as I just didn’t know whether I could/should keep it private or not. It is something that has pretty much changed everything though, and I don’t think I could keep it to myself. I’ve also been trying to google or find people who have gone through the same thing and I’ve not had much luck. I know reading other peoples stories helps me when I’m going through something, so if this helps anyone then I’m glad (even if it just helps me as writing helps me process).
I’m not doing this for attention. I just wanted to share what has been going on for the past couple of months. I have no idea how it’s going to effect me or my blog in the future. I love writing and being creative for posts and at the moment, I feel like it could be a good distraction for me.
If anyone has any questions please feel free to message me or comment.