Acceptance

Acceptance helps us to make peace with the difficulties that come with life and what is out of our control, whilst at the same time committing to action that will improve our quality of life.

How will acceptance help me to live better with a brain tumour?

Life brings both joy and pain. Learning to accept things as they are without evaluation or attempts to change them can bring freedom. It is about living with painful and negative thoughts and feelings, understanding that they are part of the challenges we are facing, and not being overwhelmed by them to the extent that we become trapped and unable to move forward in our lives.

Person overlooking landscape

Accepting that you are fatigued can allow you to move forward, whereas obsessively and unhappily playing things over and over in your mind keeps you stuck. For example, if you are frustrated and angry because you can’t do the things you used to do, your frustration and anger become the focus, draining energy that could be used more positively.

Accepting the reality of your fatigue and working with what you have now, living in the present rather than constantly asking “why?” about the past, reduces helplessness and despair. It can open your eyes to new opportunities, new ways of doing things, new hobbies, new forms of exercise.

Acceptance means allowing the painful feelings and sensations to come and go as part of the natural process of loss, while dropping the fight against them. By giving the feelings permission to exist in the present moment, but not getting caught up in them and dragged back to the past, it is easier for your feelings to come and go without you becoming stuck within them.

So we are neither bottling up our negative feelings (this is toxic positivity, and does far more damage than good), nor are we obsessing over them and denying ourselves the chance to cope as best as we can. In doing this, over time, these negative emotions lose their impact on your everyday psychological and emotional well-being.

brainstrust can provide counselling to help you. Click here for more.

How do I learn acceptance?

A useful metaphor is to imagine life as a sailing boat1.

During your life, you have picked up the skills necessary to sail your boat and you have a sense of where you are heading.

At some point in your learning to sail, you have learned that from time to time, waves may wash over the bow and you will find yourself with wet feet. The usual response in this case is: When you’ve water around your feet, use a bailer to bail out the water.

At different points in your journey, waves hit and put water in the bottom of your boat, so you use your bailer to get rid of the water.

You have been using your bailer a lot, sometimes bailing quickly, sometimes bailing carefully, sometimes bailing wildly, sometimes bailing desperately.

In all this time spent using the bailer, you realsie that you have never been able to get rid of all the water. And all this time that you have been bailing, what has been happening to the direction and progress your boat has been making?

Is it fair to say that you have been bailing more than you have been sailing this boat?

Now – what if you were to one day really look at the bailer and to see that it was full of holes? What would you have to do first? You’d have to find a different bailer, one that is more effective. It may be that you have already tried different bailers and none of them are effective anymore.

So – you need to develop a different approach. This approach is about accepting that there will always be water in your boat, and the best thing to do is get the boat moving in whatever direction you choose.

Once you get the boat moving, then you might be able to investigate some other ways of bailing; if they prove to be useful strategies in helping you to take this boat where you want it to go.

The question to ask yourself is this: Which would you choose?

  1. To have this boat with only a little water in the bottom, but the boat is drifting because you are bailing so much and you do not have the capacity to look up to steer the boat. In other words, you are not choosing the direction you sail.

or

  1. The boat has water in the bottom, maybe sometimes so much water that you wonder how it is still afloat, but you are taking this boat, however slowly, in the direction that you would most want to take it.

If you feel unable to adjust to the consequences of having a brain tumour to a point where it is significantly impacting your day to day life you may want to think about accessing professional support, through brainstrust or your GP. Get in touch to find out how we can help.

1 Gillanders, D. 2011

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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