cdog update blog
Okayyyyy I don’t really wanna write this but for the sake of myself being able to post vaguely about my life on the internet as I love shouting into the void, I’m doing it. I just want to put all of the information in one spot so that 1. I can tell everyone who cares or is nosy at the same time what is going on 2. nobody asks me about it and 3. if somebody asks me about it I can be like “actually I wrote about it so can you just read that instead”.
I don’t want to have a conversation about this with anyone really. If we are having a conversation and you ask me how I am, maybe I’ll mention it or a side effect in passing, but overall the overwhelming feeling is that I do not want to talk to anyone about this, regardless of how close I am or have been to you. I have given the updates to the people who absolutely need them and I have given all of the reassurance that I can give to my immediate family. I have no energy left. I cannot enter into conversations about this because I cannot deal with the weight of having to reassure other people about a hard thing that is happening to me. I cannot deal with navigating other people’s emotions about this because I have too many of my own to deal with. I’m not trying to be mean and I know that people want to ask how I am and want to know if I’m okay, I’m just trying to protect myself from feeling guilt about making people sad or scared or worried - maybe that sounds insane or insensitive or idk but I’m mentally ill and going through a traumatic event in a sea of other traumatic shit that happened to me this yr - I just can’t do it so like please don’t ask me about it thanks!! If your questions aren’t answered then lol I’m sorry but deal w it bc writing this once is hard enough for me!! SO
I’ll save u some leg work re my having cancer:
here’s the post I wrote when I found I had thyroid cancer in 2019
here’s the post i wrote after getting treatment the first time
here’s the post i wrote about my fatigue after the first round of treatment
The abridged version of events:
Thurs 16 Dec
Find out cancer is back, ask exactly 2 questions, cry a bit, tell ppl, cry a bit more, write a blog at midnight
Fri 17 Dec
Got admitted at 2pmish on Fri 17 Dec
Got bloods done - thyroid levels + pregnancy test (neg obvi)
Got a room at 4pmish - saw pharmacist to give them my list of medications/dr to get my breathing and heart checked/saw a nurse to get my obs done + a covid test (also neg)
Took the radioactive iodine tablet at 5:30pm - radiation level 169 - allowed to go home when it’s below 9
Cried a bit more and tried to watch movies but nothing is good enough so I watched demon slayer until it was later enough to go to sleep
Sat 18/Sun 19 Dec
Allowed to take thyroxine again, amazing, perfect, the best gift
It’s swelling behind my ears and around my face (salivary glands I think) so I get some painkillers on the first day but then it’s not as painful so w/e
Was very nauseous and exhausted for two days and only ate a packet of cornflakes and a handful of sour patch kids - had a lot of anti-nausea wafers (weak afffff) but the smell of any food that arrived was so sickening so I maybe ate like 2 mouthfuls of anything and was like #no
Mostly slept, watched anime (newest demon slayer episodes + mha if ur interested), and cried for two days
A nurse came every couple of hrs to check my obs and give me any medications I needed
Mon 20 Dec
My radiation level reads 11 inside my room, but there’s a bin there with a bunch of water bottles etc with my radioactive saliva on them so the nuc med tech did a reading outside of the room and it was EIGHT it was 8 I was allowed to leave thank fucking christ
I was escorted (wheeled in a chair, apparently my legs are of no use to me here) to the imaging department to get some scans done to see if the iodine has absorbed into the cancer cells, but they don’t really show much because they normally wait a week at least before doing scans but it’s xmas week so they rushed my in and they’re rushing me out (v grateful for this)
Appointment w nuc med doctors where I DO ask some questions
I get discharged!! at like 11:30amish and I get picked up and go home
June has to sit at the opposite end of the couch and we can’t sleep in the same bed but only for one night thankfully
and I’ve been at home resting for the last week.
The nuc med dr said that he spoke to my surgeon and he agreed with the approach of doing a dose of RAI which is good cos we’re already post RAI at this point. The dose I got this time was higher - ideally it will kill the cells in my neck and in my lungs. If it doesn’t work or doesn’t work as well as they intended, I can get more RAI. There’s no upward limit of RAI treatments I can have apparently, although I really don’t wanna do this again lol. If I do end up having to get RAI again and it doesn’t work/isn’t effective, there are other treatment pathways which would be discussed at that point.
If the cells in my neck keep growing or they spread, then it’s likely I’ll need surgery again to get them removed. They can’t do surgery on my lungs but this is where those other treatment pathways come in. I am doing myself the favour of not googling them because why cause myself that unnecessary fear now when I already have so much of my own organic fear.
Radioiodine treatment, according to what I can find on the internet, “may take from several weeks to many months for your body to get rid of any remaining cancer cells”. It’s assumed that the treatment has worked until we do follow up scans to see if the treatment has worked. I’ll get follow up scans in 6-9 months time. I have to wait for them to contact me closer to the date, and I have to go through the same preparation of stopping my thyroid meds for a month and going on a low iodine diet for 2 weeks. Papillary thyroid cancer grows slow baby so while I’m not in danger of dying, I do just have to live in uncertainty of whether or not the treatment has actually worked until I find out that it has or hasn’t. Basically, assume not cancer until they tell me cancer.
I have an appointment with my surgeon in February - it’s my scheduled routine follow up appointment with him where normally we have a chat and he does an ultrasound on my neck to see if there’s anything sus going on. We’ll maybe have an idea if treatment has worked/is working at this appointment through an ultrasound but there’s only so much info you can glean from an ultrasound. You can tell something is “suspicious” but not what it is. I also have to bring my appointment with my endocrinologist forward to February - I’ll get my bloods done to test my thyroid levels before this appointment (6 weeks from now) and I think one of the levels they take can also give them an idea if there’s anything suspicious going on still. My thyroxine dose has increased and will be reviewed at this appointment too.
It’s been a week now since I’ve been at home and I have a bunch of side effects and I am again frustrated and angry and sad at my life being interrupted by having cancer. I didn’t have any side effects last time besides it maybe contributing to fatigue levels so I’m like !!! fuck!!! this is so!!!! fuckin annoying!!!!! but apparently they can just happen for months afterwards without warning. My face and my neck are swollen. My mouth is so dry, the back of my throat keeps filling up with like phlegm?? But idk, that one seems to be lessening now but it was CONSTANT right after treatment. My tastebuds are dead and I can’t taste salt and I can’t taste sugar - I can taste some flavours but it’s really unclear what I can and can’t taste until it’s in my mouth. This could last up to 8 weeks but also could last up to 6 months or even a year? I was so excited to eat good food again and now I can’t taste anything good and I really hope it doesn’t last too long. I got this really intense pain in my neck 2 days ago which was concerning but apparently to be expected according to the internet (?) Breathing has felt a little hard the last couple days and I’m like half wondering if I need to get a covid test now or if it’s just because the cancer is in my lungs and the treatment is targeting my lungs. There’s very little information online about side effects and how long I should expect them to last which is frustrating and hard.
I joined a thyroid cancer subreddit when I had treatment in 2019 and I went back there very briefly thinking that I could look up side effects and I got so overwhelmed and felt traumatised all over again and logged back out immediately. I don’t have anyone I can ask about this except to go back to Peter Mac and I don’t want to I really don’t want to.
There is still a lot of grief left for me to feel over this, and a lot of old feelings coming back to the surface, and a lot of frustration about having to navigate my family and their emotions. I am not okay about any of this, and I probably will not ever be okay about any of it. It doesn’t feel real until it does and I’m crying. The more time that passes and the more the shock wears off, the more I feel sad that I have to go through this again. It is really unfair. I am so lucky to have a good prognosis, but it is so so unfair and I feel right now in this moment like this is going to hang over my life forever and I will never be free of it. I’m full of dread and fear that maybe the RAI won’t work and maybe I’ll need surgery again and my life will forever be interrupted.
I just don’t want to do any of this but I have no choice because the choice is get treatment or not get treatment and why would I ever go down the path of letting my cancer grow into my lungs and beyond when it is treatable? But I still have to go through the toll of the treatments and it fuckin SUCKS.
Anyway, that’s the blog ¯\_(ツ)_/¯ I'm going to carry on with my life now. I had my little cancer vacay and now I have to get back up and Keep Doing Life. It’s almost a new year and I want to think about and write about and do other things now.