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Robyn's Blog: News from Maggie's online centre head

by Robyn

News about the online centre and other cancer related topics
01 February 2013 at 11:30

Remember what was said?

 How much can you remember  of what was said by the specialist nurse or doctor  at the appointment when you were told you had cancer?   The answer is probably not very much and you may find it helpful to know you are not alone.....

Every two minutes someone in the UK is told they have cancer. Research has shown that the average person  is only able to recall about a quarter of  the information  they are given at diagnosis   Many people go into shock  when receiving the news and find it difficult to fully understand the diagnosis, treatment plan or what choices are available to them. 

The theme of this year’s World Cancer Day on February 4 is about demystifying cancer and Maggie’s Centres are  highlighting advice on how to cope at the point of diagnosis.

Staff at  all of our centres regularly see (or in the case of the  online centre message with) people who have just received a diagnosis and we offer both practical and emotional support.

  Here at Maggie's Online centre  registered members are able to message experienced cancer support nurses and other members of the online team. we can help you to understand and break down the information you have been given and help you to work out the questions you want to ask your healthcare team.  We can also talk about the support that is available here at Maggie’s, from your healthcare team and  from other organisations.  

You may also find it helpful read through the  "Getting started" blogs in our newly diagnosed section  these contain information about cancer and its treatment, how to take control of its side effects and tips to help you to focus on wellbeing

Understanding the information you have been given and what options are available can help you to feel more in control and to cope  better, both physically and mentally, with your diagnosis 

 You can drop into any of our centres, including  Maggie’s Online ,and talk to an expert for information about your  diagnosis or just come in and have a cup of tea ( a virtual one online!)  and talk  with other people in a similar situation.

Others have found the following tips useful: 

Take someone with you to your appointments – not only for moral support but also to help remember what is being said by the medical team and to ask questions.

Record the meeting – ask if you can record the meeting on a dictaphone or a mobile phone.

Write everything down in a book - include the name of your doctor and medical team, your  thoughts and fears, your treatment plan and what’s worrying you. Then it’s in a book which you can add to, cross things off and more importantly close and get on with your life. 

Get the facts - if you can find out as many of the basics as you can about your cancer diagnosis from your doctor, such as the type of cancer, where it is, if it has spread and how the cancer will be treated.

 For those of you who like a lot of information - avoid Google - the temptation is to spend hours researching your type of cancer on the internet. Every case is different and much of what you read on the web will not relate to you and mya increase your anxiety unnecessarily There is also a lot of misinformation masquerading as fact.  If you are researching online do it with some informed support.  Our information website Maggie’s cancerlinks has links to  over 200 organisations and you are welcome to get in touch with questions that you have or if you need help understanding  the information you find. 

 You may find it difficult to talk to your friends and family try to keep up open and honest communication with them and with your hospital team  after your cancer diagnosis

Talk to other people with cancer - often people find it is only those who have experienced a cancer diagnosis who will fully understand how you're feeling, plus others who have experienced cancer can share their experiences and give you insight into what you can expect during treatment.  Many people find this kind of support at their local Maggie’s Centre. Online you can  post messages in the forums, or  talk to  other members via personal messages or  in our live  online support groups

Find your own ways of coping - in the aftermath of a diagnosis discovering your own coping mechanisms is essential. You may wish to spend some time alone, practice relaxation techniques, speak to a Cancer Support Specialist at Maggie’s, take long walks or keep a journal – it doesn’t really matter what it is, what’s important is it helps you feel more calm and in control.

Work out your priorities - try to determine what’s truly important in your life and focus more of your time and energy on that.

And of course you are always welcome to drop into the online centre  and talk things over with the online team or the other  centre visitors

Best wishes



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