hi all

i’m 29 years old and was diagnosed with sarcoma in my right thigh in march of 2022, after discovering the tumour in december. prior to this i was suffering from chronic pain in my leg for years, and every time i went to the gp about it they just told me to do more exercise. then i got diagnosed with NF1, which probably explains the chronic pain and is also what led me to getting the sarcoma.

i had several more scans after my diagnosis and then after several biopsies of my abdomen they also found something called a GIST (began) growing on my intestines which they decided to ignore while treating the sarcoma.

i had radiotherapy in summer of 2022 (half a year after i first discovered the tumour lmao) and then was later told that the cancer had spread to my lung and i need chemo. i started chemo and after round 4 they said they had to pause it because it was causing heart failure, and referred me to a cardiologist. this was in early january this year and i didn’t see the cardiologist until last week, almost 4 months later. was also in hospital last week because i went to a&e with chest pains and they found fluid around my lungs and now i’m out of hospital and i can barely move around because i get too breathless and the hospital bed fucked up my shoulder so i can barely sleep due to the pain (even tho i’m on very strong painkillers for the sarcoma)

anyway, just been a bit fed up of all the wait times i experienced over the past year and a bit. i feel a bit like i got lost in the system. i know things are bad for the nhs at the moment but the past year has shown me just how bad things are. i hope things improve in the future and people are able to get the treatments they need on time.