Milea Timbergen

265 Supplemental Table 2. (continued) Missing issues Related quotes Hobbies/leisure Problems with cycling Lack of advice regarding eating or playing sports Health care facilities Pain management and referral to a pain specialist • “Certainly my greatest issues are with pain management and effect this has on sleep and concerns for the future and what changes could happen at any time, positive and negative” Symptoms Intestinal problems e.g. diarrhoea or constipation, needing a stoma Specific pain during certain movements (e.g. turning) Trouble tying shoelaces Extra tumour pain during menstruation Constant worries “Constant trepidation about what it is going to do next, whether further growth” “Feeling like a hypochondriac” “The constant worry about ‘what is it doing now’ is always to the forefront, to the point that I started to keep a daily note during certain periods of what felt like the same feelings when it was very actively growing” 9