Hello and welcome to the group.
A few hints to assist you in your battle, you probably do these things already, but just in case:
The best way you can help yourself is to manage your own treatment.
When you go to see your consultant, you will probably be given quite a lot of information in a relatively short period of time. You may be relaxed, or apprehensive, but you will be surprised at how much information you do not recall later. lf it helps, take a friend with you so you can compare notes.
You are entitled to ask for copy letters under the ‘Copying Letters to Patients’ initiative, so ask for copies of letters to be sent both to your GP and to you. Always ask for copies of scan reports – they can usually print off a copy off a scan report immediately.
Make a pack of all correspondence and reports in date order. This will be a great help to you when you are trying to keep track of your past treatments and it will enable you to make a short summary of past treatments for if and when you see a new Consultant or Doctor. You will be surprised how much information is not immediately apparent on the hospital’s record and it helps a new Dr to have an understanding of your case.
Before you go to see your consultant, write out a list of questions you wish to ask. lt helps you to remember something that you might otherwise forget when under stress. Do not hesitate to ask your Sarcoma CNS (Clinical Nurse Specialist) any additional questions which may occur to you after the consultation.
It is essential that you are seen at a ‘Centre of Excellence’ specialising in the type of cancer that you have. lf it is Sarcoma I advise you to speak to the Sarcoma UK Support Line 0808 801 0401. They will give you support and information and can advise you of the most appropriate treatment centre
Our group, Sarcoma UK Support South, which consists of patients and carers, is here to be your friend and to support you in any way we can.