Which of these have you found helpful or would ... - My Ovacome
Which of these have you found helpful or would have liked to have been offered as part of your ovarian cancer care? (Please comment below)
OvacomeSupportPartnerMy Ovacome Team132 Voters
It'd be really helpful to receive written copies of reports prior to medical appointments so that you can have meaningful conversations with your clinician at the appointment that follows. In the US (and some places in the UK) access to clinical information, tests and reports is instantaneous helping the patient to be kept fully informed about their own health and make informed choice. To be only presented information at a short appointment where you are expected to make life changing decisions or wait weeks to discuss fully at the next appointment is so outdated. Patients don't need protecting from information and should have the choice if they receive it or not outside an appointment.
It would also, particualrly for people that work or who have caring responsibilities to be given a pathway that includes estimated dates of when the next event in their pathway may happen. This can often be predicted if healthcare settings plan in advance and even estimated dates would be helpful so that patients have more notice.
Not being overlooked when diagnosed at one hospital and referred to treatment hospital resulting in 7 week delay allowing cancer to run rampant
A phone call from the nurse specialist or member of staff from the chemotherapy unit after the first treatment just to check that things are OK, it's a very scary time and even worse if you're on your own. Also after treatment has been completed a quick call would be reassuring as again it is a time when you can feel quite isolated.
I totally agree with the comments made by HilaryJane. I think everyone in our situation should be allocated a specialist nurse/support contact who can be our ‘clinical friend’ throughout our journey.
Some information however uncertain re what treatment might be available if a recurrence happens.
Prompt feedback of the results of scans and tests.
Prompt feedback on scan results. Waiting for 2 weeks is torture. In Belgium and France it’s immediate.
Written information would have been helpful for me i find it hard to keep information in so it would have been good to have it written down even now 8 months since my last chemo my brain is still foggy .
After the initial shock of diagnosis all I wanted to know was how & when I was to be treated? Information re charities etc I didn’t seek until after my 1st operation & subsequent chemotherapy. Therefore timing is the issue for me.Cheers Iside
My son was born with a leg deformity and we joined steps charity, when he was young they linked us with a buddy family who were further ahead in treatment which was great. Maybe something like a buddy through ovacome could be considered but could be tricky if people are not prepared properly for being a buddy.
