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Scanxiety tips and tricks
I was declared NED for stage 4 appendix cancer in mid 2022 after diagnosis in 2021. Treatment was brutal. I came through pretty much unscathed. Very lucky.
Since then I have regular PET-CT scans plus CEA blood tests. Initially that was 3 monthly but is now usually 4 monthly (but I’ve had one occasion when tests were brought forward to 2 months because something was not the same in my scans). Turned out to be nothing to worry about but just some inflammation in my colon resection site.
In a sense I now live 4 months to 4 months. My next tests are due next week and I can feel my anxiety rising, including in my dreams.
I know things can change for me “just like that”. My cancer isn’t curable under current science. I could have died “statistically” some time ago, but I plough on, making the most of each and every day. I’m doing well - except around scan times.
How do you all deal with your scanxiety?
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@gingerw , it does help, but the fear of losing her is overwelming. Her cancer' s path so far is very scary. Nobody has answers. Chondrosarcoma is not supposed to be in young women. It is not supposed to be so aggressive. It is not supposed to metastasize so quickly. Nobody has answers. The path forward is to cut any growths out. There is no cure. She turned 24 on 10 May! I have been with her to all the serious doctors appointments, where the verdicts were given. Her dad will be there for her next CT on 3 May. She has a strong loving support group. She/ us manage. It is difficult to say what I think and feel. I tend to draw back from everyone because I don't know, I don't have answers to anyones questions. I am her mother, I should know what to do, but I don't.
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3 Reactions@elmarie @gingerw
A cancer diagnosis is scary but especially a rare aggressive one at such a young age. My appendix cancer is aggressive and still counted as rare but there have been major breakthroughs in treatment and HIPEC for example was one. I hope the same goes with your daughter 🙏
Going to appointments with your daughter is her showing massive trust in you and how you handle the information. It’s scary for you both and not freaking out helps her stay focussed on information gathering and making the treatment plan with her team.
It’s difficult for those who love us to know what to say and do. Follow your daughter’s lead. If she doesn’t want to talk don’t push but if she does the main thing is LISTEN truly listen. Not try to fix.
I too relied on 2 very close friends more than others n my huge support team, partly because they both have severe lupus (and could help with my diet and mindfulness etc which they both practice). Partly because I didn’t want my father to worry - he knew I’d tell him important things. He was so stoical he was my bedrock. Quiet, strong and caring under me.
It’s hard finding the balance. Cancer is front and centre in some ways (medical appointments, treatments, side effects, new normal physically etc). Yet also detaching from all that and trying to enjoy what’s there in life to grab each day outside cancer is also so important. I had breakfast with my father every Saturday morning if I wasn’t ill and that became our special time. He’d simply ask how I was and left it to me to share if I wanted to. If I didn’t he never pushed and just reminded me he was there whatever I needed. We’d then just chat and go for an amble around the mall people watching and looking in windows. It’s finding the sweet spot. It’s different for everyone.