The Macmillan Neuro-oncology Nurse Specialist

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If you need support or information

I am here to help support you, and the people close to you, during your illness.

Please keep this leaflet. It will give you an idea of the different ways in which I can help. It also provides details on how you can contact me, which you are welcome to do either right away or any time in the future.

Whatever you feel at present, it may help to talk to someone who has time to listen to your feelings and who can answer some of the questions you may have about your illness or the proposed treatment.

I am available to discuss your anxieties with you and try to answer your questions (and if I can`t answer all your questions I will be able to put you in touch with someone who can). Knowing what is exactly going on may help you feel less anxious and more able to cope.

You can ask about your diagnosis as well as your treatment plan and what it will involve. The various options can be explained to ensure that you know about the different kinds of help available to you at each step of the way. I am happy to speak to you on the phone or to meet you in the hospital by yourself or with your partner or family.

If you need a link between different people and services

There will be a number of people involved in your treatment and care. You may find it useful to have their different roles explained, or perhaps on occasions, for me to contact them on your behalf.
I can also put you in touch with various services in the community that may be useful to you when you are at home.

We also have a support worker who will be able to provide information and support to you and your family and liase with other organisations.

If you need help managing your symptoms

At times the disease or the treatment may cause symptoms that are difficult to manage. Part of my role is to assist you in managing these symptoms so they don’t affect your quality of life. Most symptoms can be managed by the expert use of medication or by learning new techniques and we can look at the options together.

If your family needs support

My support is available to you, your partner and your family. The people that love and care for you may need support understanding their own feelings about your illness or information on how they can best support you. Please make sure they see a copy of this leaflet.

How to contact me

You can ring me on my contact telephone number. If I cannot take your call, please leave a message and I will ring you back as soon as I can, but this may not necessarily be the same day.

However if your symptoms are serious and you need urgent attention it would be more appropriate to contact your GP, or if the situation warrants it, the Accident and Emergency service.

Useful contacts

• Macmillan Cancer Support, telephone 0808 808 0000
• The Brain Tumour Charity
• The BRIAN App
• Brainstrust
  

Other Royal Sussex County hospital numbers that may be useful:

If you have any queries please contact the Macmillan Neuro-oncology Nurse Specialist.