So first off, there's not really going to be any order to these blog posts, they're just going to be whatever pops into my head and I feel like writing. So don't expect a timeline at first. lol. That said, this post is a rundown of everything from start to fini....now, all the treatments and struggles etc put down in one place.
2012, July ish, and I'd overcooked the chicken. Didn't matter, it was still tasty - but it was dry. Not paying attention and I stupidly inhaled rather than swallowed and began to choke. It was actually pretty bad, and at one point I thought that was the end as I couldn't cough the thing up. However, as I'm still here and writing this - no ghost writers here - it obviously finally popped out. 'Numpty' I thought. Complete and utter numpty. Definitely not something to tell anyone about in case they thought I wasn't old enough yet to look after myself...... I was 30. Didn't think anything more of it, so went about my evening. However, clearly I'd damaged something and it was bothering me all night which meant my hands were up and down to my throat having a feel around. Thought I could feel a lump, but figured it was just swelling after being aggravated by my stupidity - so went to bed and slept without a worry. Little did I know, that was going to be the last worry free sleep I got in a while!
Woke up the next day, did all the normal morning things and headed to work - throat still sore and feeling like maybe there was something still in there. Lots of talking through the day, and more feelings of my throat only made me think that maybe that lump was something still stuck in there, I even had a coworker come - yup, had to tell her the story of choking on the chicken and get laughed at - and feel my throat and compare the right to the left to check I wasn't imagining things. I wasn't. So a quick call to the doctor to say I thought I had something stuck in there and could they remove it if I popped round to see them. They advised me that they couldn't, as even if there was something in there they didn't have the equipment to get in there and pull it out. Their advice was to head to the hospital and have them check it out to make sure there wasn't a bone or something in there. Too many people were hearing about this ridiculous chicken incident for my liking!!
It wasn't urgent, so I waited for work to end and then walked to the hospital - I used to walk a lot then - and regaled the A+E receptionist with my stupidity and was told to take a seat. I can't remember how long I waited, but I was quit impressed I think, and then I had a chat with two lovely men who hid their smirks VERY well as once more the chicken tale was told. They had a quick look in my mouth - should have taken a toothbrush to work - but couldn't see anything so off I went to X-ray to see if they could see a bone or anything. Another wait there, before I was taken in and zapped - X-Ray people are too busy to chat, so I was spared more people hearing of my stupidity from myself, though I was sure it would be round the staff in no time once I was gone! I was sent back to hunt down those nice men, and wait for my X-Rays to reach them. This wait was quite a bit longer, and it was dark outside now. But finally it was my turn and I was assured that what I could feel was nothing more than irritation from where the chicken had been and that would subside in time. There were no bones in my throat, only some stones in my tonsils..... say what now?! But they were nothing to worry about. Nodding, and relieved, I grinned - but there was something nagging me. What about that lump?
So I asked them, and they said there wasn't one on the X-Rays or visible to them, but I assured them I could feel it. Then it came. That look doctors give you when they placate you but believe nothing you're saying and think you're just a hypochondriac. I bet everyone has seen that look before! But I beckoned him over and made him feel my neck, guiding his hands to where I knew it was and what did I get.... "See, there's nothing.... oh.... Oh. There IS something there!" Ha! Lass 1, Dr 0. He wanted me to see ENT, but they'd all gone home for the day so instead he wrote a letter for a referral that I was to hand in to my Dr. But for now, I was just to head on home. The victory was short lived from being right about the lump, because wth - there's a lump!
Work again, then a Dr appointment afterwards as I managed to get one of those last minute ones they hold back. I wasn't going to hang around just in case. So kept my mind off it all day and then wandered round to see the locum nd get the referral. Explained to him what had happened - another chicken shaming - and he had a feel of it too before reading the letter the hospital doc had sent him asking me to be referred on the short, month long waiting list. He snorted a bit at that and shook his head before saying 'It doesn't seem to be growing, so I'm going to put you on the year long list as non-urgent.' My face was just all O.o and ಠ_ಠ and ಠ╭╮ಠ. Ummm, no. I had never seen this Dr before, and we had spent all of 5 mins together - soI'm really not sure how fast he expected a lump to grow. Because for it to grow in 5 mins to where he could notice it...... my head would have popped off! I of course insisted the ER doc's recommendation was followed, and I was put on the speedy list, which he reluctantly did. Lass 2 - Doc 0.
And so I waited. And waited. And the lump grew. And it grew. You could actually see it, and see that my neck was lopsided by the time the appointment to see ENT came through. So off I went to see what he'd say, and honestly? It wasn't a lot. He tried to assure me that it wouldn't be anything to worry about as I was so young and healthy. I wasn't assured, I had a monster throat! Then out came the light on a tube and, 'cause I'm 'ard down and through my nose it went without any sort of lube or numbing spray. Not the most pleasant experience I've ever had, but I was to learn it certainly wasn't the worst! Luckily (?) he couldn't see anything, but he suggested an ultrasound. I'd be referred for that, and that was me done and excused. Fair enough. Thanks?
More waiting, but not so much as before, and the ultrasound appointment came through. I wasn't worried about this one as I've had ultrasounds before - including internal ones. WHO CAME UP WITH THOSE?! - so I knew what to expect. It was quite nice lying there having my neck stroked by the wand thing. Though when they pushed hard on the centre of my neck, it did feel like someone was trying to strangle me!! It was over pretty quickly, and I was off home again to wait for the next letter. Not long to wait, and I was off to ENT once more, though this time it was down and into the depths of the hospital. It was a dark, yellow lit corridor that felt like something from a horror movie - and I should have listened to that gut feeling and ran! But nooooooooooo. On I went like the naive thing I was, and into the torture chamber.
The seat was like one of those you see in an American movie where someone is getting electrocuted. A foot plate, arm rests, headrest, set in the middle of the room that only had two small slit windows up by the roof. The rest was more yellow light that illuminated a nicotine stain coloured room. There was a young man there that I presumed was the Dr, and a woman who was dressed as a nurse. Neither spoke to me and I was pointed to the chair so sat down and waited, expecting to be strapped in like a lunatic in an asylum. He finally spoke to me - while facing his desk - to tell me he was going to take a sample of the lump. Fair enough, I'm not afraid of needles and I have quite a high pain threshold, so not a problem. Oh how wrong I was! He came around behind me explaining I needed to sit perfectly still and not move while he did this, and then he began tryingto put together the hoover of torture. I watched as he fumbled and dropped the bits of a large metal gun, like a stun gun used to humanely kill animals for food. He could not get it together, but like some demon, the nurse stepped in and put it together for him. My feet planted on the step, my hands and arms in place, my head back against the rest, and chin pointed to the roof I was pulled backwards....... and the hoover started up!
This GIANT hose (needle) was shoved into my neck, then almost pulled all the way out, then shoved back in again. Over and over, all the while the suction pulled out everything that was sawn and stabbed and destroyed within. I have never felt anything like it, and I hope beyond everything and anything, that I never feel anything like it again! I could feel the vacuum in my neck, sucking and pulling. I could feel the pain as the hose severed my cells from one another. I could see the room darkening at the edges as I did all I could not to move my head - though his hand on my forehead keeping me pinned probably did most of the work. I could feel my feet scrabbling against the backplate as my fingers white knuckled as they squeezed the life out of the arms that held me to that chair. My eyes focused on those slit windows and tears ran from my eyes, hoping it would be over before I threw up, passed out, or both at the same time.
Finally, the hose was removed and that sucking sound ended and I was left sitting there breathing hard and feeling very ill. I knew the blood had drained from my face, I had felt it running away and heard it screaming as it did. A bandage was placed on the hole in my neck, and I expected it to burst into flames as my neck felt like it was on fire it was so sore. I could hear the doctor mumbling something about maybe needing to do it again as there was a lot of blood in the sample that might taint the sample. My head was assuring him that he would not be needing to do it again, because if he, or anyone, came anywhere near me with that machine again, I would not be responsible for my actions! The nurse finally looked at me - possibly for the first time since I got in there - and suddenly seemed concerned and asked if I was ok. Nope! I told her I thought I was either going to throw up or pass out, or both - and she brought me a kidney shaped piece of cardboard just in case. Gee, thanks. I'm really oknow I have a sick bowl! Then Iwas dismissed. There was possibly words spoken, but I wasn't listening by then. It was just all a bit much really and I just staggered out and home. I would definitely have to say that makes it Dr 1 - Lass 2.
The next day came, and my neck, oh my poor and abused neck. It was swollen, and all sorts of pretty colours. I had to call in sick to work as I couldn't lift my head or support it at all. The day after that, it wasn't much better, and in fact I had to take the week off before myhead didn't feel like it was going to fall off. Work were not supportive in the least, and were actually kinda pissed off that I had called in sick when it was 'just a sample that had been taken'. I wish I could have just taken a sample from them so they could see how it felt and how 'just' it was.
Anyways, I healed from that one and went back to ENT once more where we had a chat and I asked not to ever be tortured again. Please. Pretty please. The lump was still growing, and the ultrasound showed my thyroid was growing nodules on both sides, just more on the right than on the left. So there was one more test they wanted to run and it was another sample. Immediately my blood ran cold and my eyes went wide, there was no way I could go through that again. However, this one was to be done at the same time as another ultrasound - so it seemed like it would be different. I agreed and after a week or so I was off back to the ultrasound people. This one was a fine needle test, and it was SUCH a different experience to the last one. This time, I was given a numbing anaesthetic, and then the smallest, thinnest needle in the world was gently and precisely inserted into my neck a few times. I'm not sure how many times, because I could feel nothing!! However, once more I was told it might need repeated, because he seemed to have got a lot of blood and clots in the sample - and my mind went back to the butchery I endured a couple of weeks before that and wasn't surprised.
We're now into about October when Igo back to the ENT, only it's not him it's a junior. Once more I get the camera down my nose to check nothing has grown into my throat, but I don't mind this after the horror in the basement. And I'm told I 100%, categorically, donot have cancer. There was nothing in any of the samples they've taken, and they're sure it's just a bit lumpy. So their plan, is to do nothing. All the tests are clear and my thyroid is working fine and as it should - it's just lumpy for some reason. However, I ask if it can be removed as the size of it is affecting the singing I do, and was impacting on my sleep as it pressed against my trachea as I slept and tried to suffocate me. After a bit of persuading, they agreed as an elective surgery to remove half of it and I signed the form fished out for me. In reading through, there was a box to tick if it was to be tested once being removed. I questioned why it wasn't ticked and was told it was because they'd already tested it and it was fine. However, I rebelliously ticked the box and handed it back. I did question why only half when the other half was already lumpy and had the possibility of getting as bad as the first, and it would be easier if they just removed the whole. But as it was working fine, they figured I wouldn't need to be medicated and the half would make up for the whole.
An appointment came through for the surgery in November, so all the preparations were made and my Mum planned to drive down and pick me up - Scotland to Leeds - soshe could look after me after my neck had been sliced ear to ear. I waited, and I waited, and I waited, and then I was told my surgery wouldn't be happening anymore. Uh oh. They'd kept me waiting for so long, my Mum was definitely on her way down, and the hotel was booked and all sorts. But off I went to break the bad news to her.
The surgery was rescheduled for December, right before Christmas, and once more arrangements were made and time booked off work. This time, the surgery happened and all apparently went ok - though I was left with an odd pucker in my neck. They told me they removed half of my thyroid that was about the size of a softball - definitely not the size a half a thyroid should be. So off I headed to supposedly have a nice Christmas all clear, but instead, the wound got horribly infected and I was miserable and very ill. I called NHS 24/7, I called the Dr, I was sent to ENT in Scotland who stabbed a needle in it to see if puss would come out, I called the NHS 24/7 again when the drain hole popped open and a clear liquid came pouring out. Everyone told me it was just healing, but it was yellow and red, lumpy, hot, and just not right. I finally got an appointment at my parents Dr, and she took one look at it and said that the flesh and muscle was infected throughout. So the others I had spoken to were only looking and testing for the type of infection that creates a nice big sack of puss. Not the sort I had. She immediately gave me some strong antibiotics, and after two days of taking them I was starting to feel better. Lass 3 - Dr 1.
Now, work had expected me to be back on the 28th at my desk. But with the infection taking hold, I didn't get back until the third week of January. A picture had been taken of me over Christmas, sitting and eating a meal with family, and had then been posted on FB. A 'friend' from work had showed this to my manager as proof of me not acually being ill - because ill people don't eat? So once I got back to work, this was raised with me by my manager with a smirk and a tone. But I was in no mood for his attitude, because not all was right and finished.
I remember getting home on the Sunday and opening all my post, and finding a number of letters from the hospital that was getting more and more urgent and desperate in their tone telling me to get in touch with them to discuss results. Immediately I knew they had found cancer - it would be paranoia if I'd been wrong, but because it was true I just 'knew' - and pretty much broke down with all the thoughts you have when you realise you have cancer. Then the sensible head kicked in, and considered the fact I knew nothing other than they urgently needed to talk to me. So I called on the Monday as soon as I could,and the relief in the woman's voice when she heard it was me was evident. Great. I explained I'd been away and that the wound had got infected etc, and she said that was fine and would move sone things around so I could come in the very next day. Panic voice started screaming in my head again.... But I refused to listen, I wouldn't do anything until I had seen him the next day.
In I went, heart in my throat and panic a mm away, false smiles dancing on my lips and in my eyes. The ENT doc didn't look so jovial. Nor did the nurse sitting in the window with her hands and ankles folded over themselves beside the big box of hankies. Panic voice is now gloating in my head and saying 'I told you so!'. Still I smiled as I sat down, and still I smiled while I was told they had found a golf ball sized lump of cancer within that softball sized lump of thyroid - how did they miss it with all those needles? That's a skill! Then I was sent outside for aminute, though I don't remember why as I was forcing myself to hold it together with any emotion I could. I think I focused on smugness and vindication, that I had been right to insist it was removed, and that I was right to insist that it was tested. I could hear through the door the nurse asking the doc if I understood what I'd been told as I was taking it remarkably well. He just said that I was internalising it all and that he was sure I was fine. Then in I went again to be handed a load of leaflets on papillary thyroid cancer and the next steps to be discussed. They needed to go back in and remove the other half of my thyroid in case it wasn't well either - didn't I suggest that in the beginning? - and I would have some scans first to check my lymph nodes incase they needed to be removed too. Then it would be one dose of RAI and I'd be cured. Wasn't I lucky to have thyroid cancer and not one of the other sorts. I heard that a lot, and I still hear it today.
Off I went, and as I waited for my taxi - my energy not right yet after the tole the surgery and infection took on my body - I texted family and friends to let them all know, but asked them not to respond as I needed some time to get my head around it and what it all meant to me and my life, and all of my plans for the future - as well as how much future I might even have. I guess it was also to give them time so they could process it and get their heads around it, soI didn't have to deal with their emotions and such. In case you can't tell from how I write about all of this - I'm really not an emotional female. lol. They're kinda messy and usually unnecessary in large amounts imo. But then, I've always been a bit weird that way. So of course I went home, only just managing to hold it together in the taxi, and let it all out for about an hour once I was home. Then I pulled myself together and said enough of that, and started reading to see what was what. Before the calls and messages started rolling in and I had to deal with everyone else's breakdowns.
What are we up to now? Lass 5 - Dr 1 I'd say, as I'm getting a point for the surgery and the testing! Infact, I'm putting myself up to 6 for thinking the other half needed to come out!
The dates came through quickly for a CT and an MRI scan with contrast to see what my lymph nodes were doing and if they were healthy. And btw - that feeling of peeing yourself in the CT scan is REALLY weird. I was positive I actually had wet myself the way it felt, and couldn't believe that was just what the drug did to me. The relief when I got up and found myself dry was amazing! I expected some results, or an appointment to letme know results, but nothing came through until my next surgery appointment. February the 14th 2013. Along I went, Mum had arrived the day before, and I changed into the gown and waited. The ENT surgeon popped in to say I was next and as he was leaving I quickly asked what the results of my scans had been as I didn't know exactly what they were doing to me. Turned out, he'd not even looked at the results yet. He brought them in and looked at them in front of me, then took them away again with a frown on his face. My heart sank, because wtf was going on now?! Back he came after a good 15 mins with an entourage in tow, and took a seat beside me. He explained that the good news was that my lymph nodes were clear, but there was a lump of something sitting behind my breastbone and on top of my heart. I asked if he was going to remove it while in there, and what it was, and he said he wouldn't and he didn't know.
O.O
Apparently it needed to go to a Thorassic surgeon, and as no-one had checked the scans before now, they didn't have one free to come into surgery and sort it out - so I'd have to be referred to one. But they'd probably give me another operation to open up my neck once more and stick a hoover in - PTSD flashbacks from the torture chamber - to suck the lump out through my neck. But we were going to go ahead with the completion lobectomy now and Throassic could worry about the rest later. This time, there was no infection, I healed fine, and there was no pucker and ugly lumps in the scar. So in a way, I was glad I'd had to have a third as it got rid of the 'nose' my scar had ended up with the first time. Got to make the most of the small wins!
Appointments then flew in. Oncology, Thorassic, and then the one for the RAI. No complaints about oncology, other than she just didn't smile and seemed totally impersonable. But I guess in that sort of a job you need to have some form of detachment. And I guess that with the way Thyroid cancer normally works; you're in, you're cured, you're passed to Endocrinology. Still, a smile couldn't hurt. Thorassic Man was lovely. A really good laugh and very personable. He discussed options as they couldn't tell from the scan what it was or what it was attached to, or much of anything other than the fact it was there. He could have gone in through my neck to have a look and perhaps hoover it out, however the scan showed that it was exactly the same width as the biggest 'hoover' and he didn't want to risk breaking up whatever it was. He could have gone in through the armpit to take a sample of it and peer around to see what was going on in there, but depending on what was found I'd need another op to maybe remove it. In the end, I just told him to whip it out.... which raised a chuckle.... which was the third option, and it was booked in for April so it would be done before the RAI in May.
All went well, and it turned out to be a fully encapsulated eptopic thyroid growth on/around my heart. Well now, aren't I special! So now I have a scar running down my chest from open heart surgery where they removed my breastbone and cracked my chest to get at this stupid lump. Recovery wasn't great as I had a lot of pain, and then a week or two later was straight into hospital again for my RAI. I probably wasn't the best patient, because I was in a lot of pain and wasn't mobile at all as my bones weren't healed - on top of all the RAI side effects. The most fun, was trying to get into the right positions and lying still for the scans at the end before I was released back into the wild. What I'd been told would only take 30 mins, took 3 hours. Now, I was sure that that wasn't just because I couldn't get into the right position, and something just felt off. I found out why at my next oncology appointment.....
I'd been told that it would be one dose and I'd be fine, there would be a tiny small chance I'd need a reduced second dose to mop up, but that was highly unlikely. One dose and done. The phonecall from thelovely thyroid nurse the night before the appointment, telling me to bring someone with me said otherwise though. I tried questioning her, but of course she couldn't say anything and justkept repeating about how it would be better if I brought someone with me. I think in the space of a 5 min call, she said it about 8 times. As soon as the phone was down, my good friend panic voice was back and an almighty battle raged in my head between panic and reason. Panic told me it had spread, and I had months to live. Reason said it had spread, but with no idea of how far and to where that was all we could think. And that was the conclusion I came to before bed and what I held in my head as I went in for the appointment.
Once more I was faced with a double team of Dr and Nurse. Once more I was smiling and nodding and taking in what they said, it had spread to my bones and was in my skull, shoulder, arm, ribs, and pelvis. But good news, it wasn't in my spine. I asked some questions about what it meant and where to go from here, took it all in and thanked them. I don't think they believed I'd taken it as well as I had, because I was taken into a darkened room by the nurse and a box of tissues was presented. She asked a few questions to make sure I was actually ok, and couldn't believe I'd taken it so well. I just explained that her call had basically told me all I'd needed to, and I'd already dealt with it - so it wasn't a shock. She apologised and I said it was ok, then headed off to continue healing until the next RAI in November.
The November RAI was pretty uneventful, though it did show that most spots had cleared up in my bones, and it was just the big bit in my rib that was still there. So I'd need another dose in the future. However, this dose made me quite ill, and I was in a lot of pain emanating from my bones. The main problem was work. They were being really difficult and were pressuring me to try and get back in. They didn't understand how ill I was, that I wasn't healed and all the anaesthetic had had a knock on effect that coupled with two doses of radiation were not playing nicely together. However other than when they were trying to demand I return to work, I didn't hear from them. No wel wishes, no card, no 'how are you' messages, nothing. It was like I was nothing more than a problem for them, not a person going through a LOT. Also, when I heard it was cancer back in January - the guy I had been seeing for a year broke up with me as he didn't want to have to deal with someone who was ill.
My memory and brain weren't working too great by then, so I'm not entirely clear on everything that happened and in what order. But that's us in November 2013, and sick pay was running out so there was stress over cash beginning to niggle away as I was going to be moving onto statutory sick pay only. The hormones were really kicking my bum, and I was on all sorts of different thyroxine doses trying to get it right. Then I was on stuff from the endocrinologist, which threw all my hormones all over the place too. Then we added in all manner of pain killers to try and manage the pain from the cancer swelling and dying within my bones; everything from ibuprofen up to oromorph and MST. But nothing worked. The best way I could describe the effect of MST was that you knew you were in pain, and I could feel I was in pain - I just didn't care. I also never got used to the morphine effect and it never settled down, so I was living life in a fluffy cloud and a wave where it all swam and made me feel quite ill.
My teeth have suffered as well, they've needed fillings and more since all of this started, and my skin isn't as nice as it was with a lot of dry and scaly patches and lesions coming and going. Another dose of RAI in August of 2015showed that the cancer in my rib still hasn't gone, and there are/were 2 new spots that have appeared. One in the small of my back and one at the top left of my spine. This has probably been the worst, as every movement aggravates the small of my back. And the pain at the top often is that deep pain you feel inside, right in your stomach making you feel sick and making my left arm completely useless. In a few weeks, I go in for my 4th dose of RAI - so who knows what will be found this time, because if the pain is anything to go by...... it's def still there.
But key point of interest in that muggy time..... the doctor who said Iwasn't in any pain because I 'didn't look in pain'. And the doctor who said I was 'only in pain because I was fat and lazy', so I need to 'get out and walk more'. Now, I'm registered as disabled because of the pain I'm in, I can barely get up and down the stairs some days. So how he thought that I'd be able to just go for a walk is beyond me. I had to quit my job as work were being impossible. I probably had a case for constructive dismissal, but I was in no state to fight or think or anything other than roll over and take it.
Oh yes, and 1st of April 2015 - I was told I had a meningioma. I did just burst out laughing when the mean old neurologist told me, simply because of the date. She wasn't amused. So that was 3 MRIs to find out it was there and tosee if it was growing. Last from the test says it isn't, but they don't know what it is exactly. So it could be Thyroid cancer spread, or it could be something else entirely. So there's that there too.
I guess the only other interesting thing to say - that I can think of at the moment - is that there is a large possibility that allllllll of this has been caused by Chernobyl. When the accident happened, I was living in Germany where there was quite a high fallout and I was at the perfect developing age for the radiation to affect me. Then I moved back to Scotland where there was a large radioactive cloud falling too. With my age and spread, as well as how it has been reacting to treatment - it's the same as is found in those much closer to the accident site apparently. So that's a fun fact.
So all of this has left me; barely mobile, 5 stone heavier, unable to work for now, unable to continue with most of my hobbies, alienated from friends who want to be more active or are just uncomfortable with the whole 'sick' thing, skint from trying to pay bills without a wage, and just generally a little bit 'meh' right now. If it wasn't for a couple of good friends and my cats, well, I think I'd be a much more depressed blob that didn't get out of bed. Well, that's not true actually, I'm just having a bad day today. I have a load of plans, a little too many actually, that I want to follow through with. And I'm absolutely pushing myself and taking every good day that comes and trying to make the most out of it. Did a 2 year college course and came out with a distinction and everything. And have managed to travel through the course to France and Iceland, made it to a friends wedding in Jersey, and a couple of other places through birthdays, gifts etc. So it's not all doom and gloom when looked at properly and with a wide angle lense. It's just hard to always do that.
I think that's all for now, it's late and I'm knackered but I wanted to get this done. And if you've managed to read all the way through this..... well done! lol. Hope I didn't bum you out or bore you to death!
