Things to be asking at your next appointment
The consultation always comes and goes quicker than we expect. Sometimes that's because you've focused on some tumour changes, maybe it's because you're stable or maybe it's simply because your neurosurgeon isn't great at freely offering information. I don't know about you but I always come away and remember 1000 questions that I wanted to ask and will now have to wait until next time to. Whether you're on 'watch and wait' like myself, an intensive treatment plan or its your first ever appointment, below is a snippet of a checklist devised by the Brain Tumour Charity so that you get the most information possible out of your appointment:
- Who is my Clinical Nurse Specialist and how do I get hold of them? A CNS is a very experienced Nurse who is your number one point of contact for questions, concerns and everything else to do with your care. They have the ability to refer you to other services such as a Councillor or a Epilepsy Clinic. They're also the nicest people you'll ever meet, they're full of empathy and know just what to say.
- Are there any treatment options for me here, is there anything other patients with my tumour have tried? Sometimes life can be cruel and if you're like me, there will be no current treatment options. (Which is why I'm raising so much money for research.) However, sometimes it's worth asking if your surgeon has any genuine recommendations, even if it's private, there's always ways to fundraise. This can include treatments like Proton Therapy and Gamma Knife Surgery which are not commonly used in the UK or NHS.
- Are there any current clinical trials I could get involved with?
- Do you have any recommendations for Travel Insurance?
- Who can I contact I contact in an out of hours emergency? May I have the appropriate phone numbers.
- Do you have any leaflets from The Brain Tumour Charity that I can take away with me?
- Does my tumour have any long term side effects that I need to be planning for? e.g. future pregnancies, driving
- Are there any charities that I can contact to help me with applying for benefits or local support at home.
By 2020 I am aiming to have raised £5000 for The Brain Tumour Charity to help #FindACureSooner and ensure continued support and readily available resources for patients and families of those who have Brain Tumours. Please click on the link and donate, if all of my readers donated £1 I would have met my target already! https://www.justgiving.com/fundraising/moneyforbrains