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This guide has some suggestions about how to help you feel that you are in control of a situation over which you have no control - at the moment. It does get better.
What to do when you hear the diagnosis
When the consultant radiologist told us that Meg had a brain tumour, I discovered what being speechless means. I opened my mouth but no words would come out. Unusual for me! The possibility that you or the person for whom you are caring might have a brain tumour will have been on your mind, otherwise you wouldn’t have reached this point, but you never know how you will react until you actually hear the news.
You will be reeling but your ability to cope does get better – you develop systems to cope with such traumatic change. And it is so hard being person that loves the afflicted so much that it hurts; you just want to give the person hope and try to hold it together for all around. And if it is you that has been diagnosed with a brain tumour then immediately your thoughts are about those around you and how they will cope. You want to reassure yet you yourself are feeling very frightened.
What you want to know is that you have explored every avenue and have done everything that you can be doing to help. I can offer the following suggestions, but please remember we are not doctors - just people who have been through a similar experience with our daughter. Much depends on where you are based and the mindset of the people who are working with, and I hope, not against, you. And of course, you may well be doing much of this already, so I apologise if it sounds patronising.
Our suggestions
- You must look after yourself. You will now be the lynchpin and will need to be orchestrating everything. There will be so many people involved in the patient's care (read our guide to Who can help »), and even if (s)he was their only patient, I doubt they would be able to talk to and update each other on a regular basis. Establish a folder where you keep copious notes of everything, including a contact list of the people involved in the patient's care. Take this folder to all consultations; the notes won't always be in the right place at the right time. I was called the scary mum by one of Meg's consultants because I knew more than he did about her case and had it all with me. Ask consultants to write to you afterwards about what was discussed. Not all do this automatically. Make sure that the GP is included in the CC to these letters. And also, if the patient is willing and it is appropriate e.g. they may only just be over 18, get them to sign a standard letter wich you can show to people, which allows people to disclose information to you and discuss the patient's case with you. A copy of this letter should be kept on people's files. Meg didn't want to be bothered with any of this and yet people wouldn't talk to me because she was an adult. She was only just 19!
- Buy at least two sets of extra scans (around £30 a set) preferably on CD. Keep one for yourself and take these along to consultations, for the same reason outlined above. Use the other to send for second, third opinions. Don't be put off by a reluctance to let you have them. Insist.
- Technology changes so it doesn't really matter where the MRIs (brain scans) are done. What is critical is to make sure that the same consultant radiologist reads the scans every time, so that they know the state of play intimately. Insist on this too. Don't be bullied by people.
- Visit the GP ASAP and ask for a second, even third opinions at the National Hospital of Neurology and Neurosurgery, Queen's Square, London. They will find the right consultant for you to see. Get your GP on your side – they can unlock so much for you.
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If you would like a free 2nd opinion at the National Hospital of Neurology and Neurosurgery then please contact
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or call 01983 292 405
- Ask if there is a community neurological rehabilitation nurse in your area (through your GP). Meg’s is brilliant, as much for me as for Meg. She came to the house and just talked about our needs and then unlocked things for us, but I didn't know she existed until I went to our GP in desperation. We also (after a year) applied for the disability living allowance for Meg – this is another ball game you may need to face in time.
- Finally, you will be frustrated but don't expect answers from your consultants - they don't really know anymore than you do. Once you accept this you will be able handle the whole situation much more effectively. It took us a year to get to this point. Seek second, third, even fourth opinions and then try to stand back and draw out the key notes. Your position is not easy – you will be feeling like you are damned if you do and you're damned if you don't but at least you will be able to say that any decisions you have made have been informed decisions.
It's good to talk
If you need more information or would like to have an informal chat then
you can call Helen on 01983 292 405 or email
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Your suggestions
The more we can sail this ship together the better. If you have any further ideas/advice you can share with us then please get in touch ».
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