Treatment may continue for a long time, so obviously you need to have a diary with you all the time!
We found that we were seeing many different professionals, and the number can increase if extra treatment is required for side effects of chemotherapy, or for secondaries give rise to problems. In Abigail’s case the treatment of a secondary on her face affected an eye, leading to seeing a consultant ophthalmologist.
Each professional seems to create their own set of notes, so they usually start by asking for the history of the case. For our ophthalmologist this needed a potted version of about 4 years’ of information! The referral they may have received can be unclear, or may contain errors, so don’t assume they know all the background accurately.
For these reasons it is well worth starting, at the beginning, to keep a log of the main events, with dates and locations (you may be at different places for treatment, scans, radiotherapy, etc.) The things we found worth recording (on a simple piece of paper kept in your diary so you have it with you at consultations/treatment sessions) included:
- First presentation date and what was detected
- Dates and locations of scans
- Dates each form of chemotherapy started
- Dates of surgery
- Dates and locations of ultrasounds
- Dates of radiotherapy, and the area of the body treated