struggling with long term issues after chemo... not a relapse so i'm just stuck like this?
hi all, ive never posted here before because i find it all too real when i come on here; but i'm really struggling and feel so lost on what too do.
i'm 20 years old, so i was young when i was diagnosed and shouldn't have faced so many issues with my treatment. went through 2 x ABVD and then 4 x escBEACOPDac, which i completed in september 2024. i had multiple sepsis admissions due to my home circumstances, which were not suited to care for me. i was in a shared supported independant living house, i shared a bathroom with 9 others who had never been taught cleanliness and it was cleaned by a cleaner once a week. no parents no extended family, so i was very ill and very barely dragging myself through with very little support in a very germy house on very unhealthy cheap plain instant food. i understand that chemo takes a huge toll on the body long term, and that my circumstances and sepsis admissions means my body would take longer to recover, but over the past 6 months all of my progress has backtracked.
this time last year i was cleaning my flat everyday for multiple hours, i was doing 30 minute a day workouts on top, i would spend multiple hours stood singing away doing all my skincare and curl care in the shower. i could even do all that, and then spontaneously go clubbing and dancing all night with minimal sitting breaks. i would be in bed all day after, but after that i'd be back to it. i even got a cat because i was so hopeful for the future and how much healthier i'd become, and was able to care for another being. now i'm lucky if i get to do more than 10 minutes of dishwashing per day. i shower sat down maybe once a week, dropped all my skin and haircare habits to manage my fatigue. bigger chores like cleaning the bathroom get done maybe once a month. i'm barely able to cook for myself again, and if i do i sit down at the kitchen table and use a food processor to speed up the prep time, even though i used to adore it and still do. i could spend hours chopping up veg if i had the physical energy. i havent even considered going clubbing for months. i have consistent pain under my right ribs, the same place my cancer used to be, and in my chest, which feels absolutely suffocating when it gets bad and is impossible to distract myself from. i get awful pressure headaches, feels like they pulse through my entire body every time i move, like someone squeezing my skull over and over. i've landed myself in even more debt recently because my brain fog has gotten significantly worse too, and i completely didnt notice that my water bill stopped going out. my fatigue above all is so so life ruining, i can never rest enough and the slightest of minor activity around my home leaves me completely exhausted for days. i ended up asking for a pet scan because i was worried about a relapse with how disabling it all became again.
i had my results today, and there's no evidence of a relapse. still some slightly active and swollen thymic tissue, but no increase in size or avidity. had my bloods checked, hormones are fine, slightly low on iron, but i've literally just eaten air fried chips these past few days because i've had back to back appointments so that explains that and my haematologist agreed it wasn't an explanation for my fatigue. if i'm honest, i was kind of hoping for bad news. it would've been a straight answer and a solveable problem, but now i'm just like any other patient with inexplicable symptoms and no idea what the cause is. i have to go back to my GP, but they also seem clueless on what could be the issue, i just keep being told how chemo does have long term side effects, but no one can explain why i've gotten so much worse. i'm so broken at the thought of this being my forever, my normal, my healthy. if anyone has any ideas on what kind of tests i could ask my gp for, any specific issues that could be happening, any specific team to ask for a referral to, literally anything, i'd be really grateful. right now my only next step planned with the gp is physio for my back pain, which is most likely not connected to the other symptoms. thank you for reading