Scanxiety is definitely real!!

[LewLew19]

Hi there, so mum has the results of her first CT scan very soon. We are terrified. She seems well and has no new symptoms or worsening. No obvious reasons to believe the chemo is not working. Yet today they changed her appointment to this Thursday instead of next Wednesday. I know that this is likely to be a simple admin change, maybe the onc has a gap now, but minds are racing with all the what ifs. She’s due another round 4 of chemo next Tuesday, the original appt was the following day. The waiting is just the worst feeling, I guess come Friday we will know where we stand which is better than not... I guess!!

[JanetteR57]

I know the fear and anxiety are real but worry will only make it worse. Try and distract yourselves. Sometimes it's the way the clinics fall and that certain clinicians lead and if they are on holiday/courses, they move the clinics around. I was at a tertiary centre yesterday where my original appointment (one of a batch of tests session) was due 31/7 then postponed to November, then when queried as it's a follow on from my annual appointment in 2018 (yes, not 2019), it was moved to 8/9. I saw the clinician who then said they would start treatment straight away when I returned from holiday i.e. 18/10 but on return found the appointment had been moved back to the end of November but a phonecall pulled it forward to yesterday! Try not to read anything into changes - it's a worrying enough time for the patient without others surmising the reasons as this can then add to their anxiety. You could always call the secretary who may offer an explanation. When my appointment was pushed back from July to November, I was told this was a very specialist appointment and the clinician had just gone on long term sick and although there was another, she only saw patients once they'd been assessed by the other. I asked if I could go somewhere else for the appointment and was told Manchester (UK) was the only other centre offering this so I asked if I could go which was when my appointment was then pulled forward to September. When I saw the clinician in question, she'd come back from sick leave sooner than anticipated. It's half term in the UK right now so many staff are away or covering for others. Hope you get the answers you're looking for next week and try to deal with the 'what is' rather than the 'what if'. The whole pathway involves many waiting games and patience is a definite requirement which in this day of almost instant responses/messages is not compatible with the various tests/investigations necessary for the personalised medicines/treatments offered. good luck.

[LewLew19 in reply to JanetteR57]

You’re so right, I think it’s human nature to read into everything and try to endlessly reconcile what’s happening when in reality we simply don’t know. We’ve all just got to keep busy. Tomorrow I’m taking mum out for the day with my little boy, take her mind off Thursday. The main thing is knowing if her treatment is doing it’s job. Burying your head in the sand won’t help! I’m really looking forward to the weekend and I’m praying it’s with a little relief that things are going our way! Thanks again!

[Lovey1000]

Oh yeah your not alone I payed in my bed 3 days waiting for results and my brain is 100% clear but the wait ughhh awful every 90 days and tomorrow I have my regular CT chest scan so here I go again but I feel better cause if my brain is clear I pray my body will follow!!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

It is good that your mum has no new symptoms. Her oncologist will discuss her scan result and how she has responded to her chemotherapy treatment. Waiting for scan results is always an anxious time for patients and their families. Others have given you good advice,try not to read to much into getting an earlier appointment. On a positive note, getting an earlier appointment means less time waiting for the results. If you would like to speak to one of the nurses please don't hesitate to call the nurse led helpline 0800 358 7200.

Kind regards,

All the team at the Roy Castle helpline