How the service will help you:
- Provide ongoing advice and information.
- Give advice and information about radiotherapy, chemotherapy and any side effects.
- Give advice regarding seizures, steroids, fatigue, travel, wig information, financial concerns etc.
- Work closely with other healthcare professionals involved in your care and refer you to their services when required.
- Provide continuing support for you and your family during and after treatment acting as your key worker.
Key worker
Your key worker will be your main point of contact, giving support during and after your treatment.
If at any point a member of your local community team is more appropriate to be your key worker, then we can discuss this together.
It is not unusual for your key worker to change during your care pathway.
Your GP, District Nurse or Community Macmillan Nurse may be your key worker in the future.
Contact information
Macmillan Clinical Nurse Specialist for Neuro-Oncology and Sarcoma
Monday, Tuesday and Friday, 7.45am to 3.45pm (excluding bank holidays)
The Clinical Nurse Specialist covers all of the hospitals in the Lincolnshire area and is based at Lincoln County Hospital.
Telephone: 01522 572313
There is an answer-phone service where messages are checked daily. All messages will be returned though this may not always be on the same day.
Please always leave your name and contact telephone number.
If urgent advice is required please contact your GP.
Multi-disciplinary Team (MDT)
During your treatment and on follow-up your surveillance/interval scans may be discussed at the Neuro-Oncology MDT meetings.
The local team consists of:
Two Clinical Oncologists
Macmillan Neuro-Oncology Clinical Nurse Specialist
Cancer Care Co-ordinator
Frequently asked questions
Q: What is the procedure for me being able to drive?
A: This is dependent on your diagnosis and treatment. The DVLA must be informed immediately of your diagnosis and treatment you will be receiving. You may wish to cancel your car insurance temporarily.
Q: Can I drink alcohol?
A: Yes, in moderation, although if you are having seizures alcohol can induce them or have a sedating affect. You may be advised not to.
Q: Am I able to travel/go on holiday?
A: There are specialist companies who will provide insurance cover. You must NOT fly up to 6 weeks after surgery.
Useful Contacts
www.braintumour.org.uk Tel: 0845 4500 386
Macmillan Cancer Information + Support Centre, Lincoln County Hospital
Tel: 01522 573799
The Brain Tumour Foundation ‘Ready Buddy Go’
Tel: 020 8336 2020. This is a support network with somebody in a similar situation.
www.epilepsy.org.uk – Seizure support
www.willowfoundation.co.uk – Special days out for patients and their families
www.honeyrosefoundation.co.uk