Preparing for Neurosurgery – A Timeline

Two to four weeks before your brain surgery

You have time to prepare and plan for some practical coping strategies. This will enable you to focus on healing post operatively rather than worrying about daily responsibilities and making choices will help you adjust to the uncertainty, which lies before you. Don’t be afraid to ask for support, but it helps people if you can make specific requests such as ‘Could you take me to my appointment on Thursday?’ or ‘Would you mind taking this to the post office for me?’

Here’s some more tips:

  • Cook and freeze some meals and ask friends and family to provide you with nutritional food during your recovery. They will be only too pleased to be able to help and will be wondering what they can do to support you.
  • If you are feeling well, catch up with some of the household chores so you won’t be looking at them when you come home. You certainly won’t feel like doing them after surgery.
  • Buy any cards and presents that are needed for birthdays etc so that you can send them whilst you are recuperating.
  • Get a stack of DVDs and books to read during your recuperation, or at least make a list of those that you want to read/see. It may take a few weeks for your vision to settle down, if your sight is affected. But you will be able to read and watch for short periods.
  • Plan for any childcare that you may require, or if you are looking after an elderly person.
  • If you are working, you have time to make arrangements for any cover that you might need. You can delegate tasks and handover your workload so that you do not have to worry about this. This will speed up your recovery.
  • It is tempting to avoid this subject, but it is a good idea during this period to review any personal documentation such as advance directives or Living Wills. This is a legal document which specifies which treatments you would like to have (or not) if you are unable to communicate your wishes with others. Or you might decide to designate a person who has power of attorney for health care, if you are unable to make medical decisions for yourself. This means that you have an assurance that your personal wishes will be respected in the event you cannot communicate.

One week before brain surgery

As the date approaches you will be anxious. Make a list of any questions or concerns that you still have. You will probably have to attend an appointment during this week where any preoperative tests will be done, such as an MRI, ECG, blood tests etc. You will probably have an interview with the anaesthesiology staff, and your medical history will be taken. Don’t forget to ask about taking any medication with you. Make notes; it may help if you can take someone with you for this appointment. You will also need to reassure those around you. This may seem an odd thing to say, but they will be as worried as you are. Keep talking about what is ahead of you and also what you plan to do to celebrate when you come home. Allow time during this week to spend time with friends and family. Do some enjoyable things to alleviate the anxiety, which you will all be feeling.

Clarify with the hospital how family will be kept informed during the actual surgery. And ask someone in your family to take the responsibility of keeping friends and family informed.

You will be provided with a list of things to bring in with you, so make sure that you have a small bag. You will need to bring:

  • Any insurance documentation (if appropriate)
  • Any prescription medication
  • Glasses, hearing aids, dentures (if appropriate)
  • Lightweight robe, slippers, nightdress or pyjamas. As your head will be bandaged, make sure that any tops are front closing so that you don’t have to pull them over your head. Choose clothing with short or wide sleeves (it is hot in hospitals) because of IV drips. Include one pair of socks. You may also need those sexy stockings which prevent DVT.
  • Personal toiletries.
  • A small notebook and pen. Useful for key contact numbers, noting milestones in your recovery, questions that bug you at 3am.
  • An inexpensive watch – this is important. Your routine is about to be turned upside down, starting with a very long, blissful sleep (if you are not having an awake craniotomy) and you will find it comforting to know what the time is so that you can have some structure to your day.
  • You might want to take some pictures of your family and friends to look at and some light reading.
  • Small change will be invaluable.

And finally – the ban on mobile phones in hospitals in the UK has been lifted. You may be able to have your phone with you, but you will still not be able to use it in critical areas. Don’t forget your charger!

The surgery day

You may be admitted the day before or early on the day itself. It will be long day for everyone involved and sooner you get on with the it the sooner it will be over. You won’t know much about it! You will not have been able to have eaten anything since the previous midnight, but you will able to rinse your mouth with water without drinking.

You will change out of your clothes and be asked to put on a surgical gown. Ask for help if this defeats you! Don’t wear jewelry (although wedding rings can be taped on), contact lenses, dentures and remove make up and nail polish – the doctor needs to see your toes and fingers to make sure they aren’t blue.

You may be given a premed which is great – it relaxes you and takes the stress out of the situation. An IV line may be inserted before you go to theatre, but the bulk of the invasive work is done after you have been sedated, so you won’t know anything about it.

Each hospital has its own procedures about updating family and friends; remember that their prime concern is with you.

After your surgery you will be taken to recovery or directly to an intensive care unit (ICU). When your pulse, blood pressure, temperature and other vital signs are stable you will be moved to another area where you can be monitored closely for 24 hours.

One to three days after brain surgery

Most patients go home on day one. Let’s hope that you are one of them, but don’t worry if it is decided to keep you in. It will be in your best interests and there will be many changes during this period. You will become increasingly independent as you are weaned off drips and other equipment. This will have a greater impact than you think, physically and psychologically. To be able to move without navigating your way round your IV is liberating, as is being able to walk to the bathroom without having your urinary catheter in tow.

You will be encouraged to move out of bed, even if it is just to sit in a chair. Don’t be afraid to ask for assistance – listen to your body and take the healing process at your own pace. It is not a competition and it will be very much a case of two steps forward one back. Day 2 will be worse than day 1 – the anaesthetic is wearing off, you should be at home and you are looking at the long road of recovery ahead of you. But it will happen – you will get there, just take your time.

Did this information make you feel more resourced, more confident or more in control?

Date published: 17-05-2009
Last edited: 28-02-2018
Due for review: 28-02-2021

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

  1. Select the year of diagnosis using the drop down menu.
  2. Select your patient group of interest from the four drop down menus in the following order:
    1. Tumour group
    2. Age at diagnosis
    3. Region of England
    4. Gender of patient
  3. To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

  1. How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

  1. Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

  1. Data is not yet available for the selected year from Public Health England.
  2. Data is not available because the data quality is too poor to release this statistic.
  3. Data is not available as the statistic is not appropriate for this group.
  4. Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

  1. Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

  1. GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

  1. Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

  1. Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

  1. Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

  1. Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

  1. Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

 

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php