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Invisible disabilities week 2021

The impact of a brain tumour is far-reaching. Depending on the tumour’s size and location, people can experience a range of side effects that are often exacerbated or added to by the impact of treatment.

These side effects are often invisible, meaning that alongside their impact, people with a brain tumour face a perception that they are often not struggling as much as they are. People might remark on how ‘well’ you look, but inside they are facing a mountain of challenges.

Below, Sharon (pictured) has shared the invisible impact of her brain tumour diagnosis.

Chronic fatigue

“Overwhelming exhaustion and fatigue which can come on with no warning sometimes. My legs become too weak to hold the rest of me up, then the pain begins in my lower back, I have no strength and then I lose the ability to speak as though my brain is shutting everything down to make me rest. This can and has resulted in a collapse. This can be for a day until I’ve rested up enough, but a very bad attack can render me too weak to function for days. In general, I need to rest in the afternoons to recharge my batteries otherwise I become too tired.

It basically runs my life.”

Chronic pain

“Following the swelling on the brain when the tumour was discovered and two years later having aseptic meningitis secondary to the meningioma, I was left with a lot of nerve damage. This causes pain throughout my whole body.

I wake up in pain every morning and if I have done too much this pain is heightened.

Every muscle in my body, sometimes even my fingers and toes hurt. If I want to do something physical, it will cause me pain and dependant on what that is as to what level of pain I will be in. I struggle with limited mobility at times. I have learnt to live with it, but it is never something I can forget as it is constantly there.”

Chronic migraines

“Migraines that can last for days. Fortunately, I suffer less from them now than I did. These are headaches like no other and can leave me struggling with the pain and pressure in my head and the affect that light can have on my eyes can mean that I need to be in a darkened room for hours or days.”

Other headaches

“Mainly pressure headaches, which can manifest themselves randomly, but usually if I have done too much. These can be quite debilitating.

It becomes hard when you try to say you have ‘such a headache’, when people say ‘oh yes me too’ or ‘its just a headache’, but they have no idea what the experience is like and how often it can be part of your day.”

Tinnitus

“This developed over the years since the inflammation of the meninges. This is heightened when in a noisy room, pub, large gatherings…the noise feels heightened and the more noise of chatter and music can cause the ringing in your ears to feel louder and louder and it becomes difficult to concentrate on everything going on around. The ringing and whooshing that happens remains there for some hours after.

I find noisy places difficult to deal with now.”

Social situations

“My favourite saying is: “You can feel lonely in a crowd.”

As a very sociable person, I can struggle being in a large crowd or a pub or bar or noisy restaurant. I feel that all the chatter, music and general situation makes me feel stressed and my brain struggles to filter it all, so it becomes overwhelming, and I have to take myself out of the situation for a minute or remain on the outskirts of it in order to cope.”

Balance issues

“I have problems with my balance all the time and this has becoming progressively worse over the last year or two. I regularly lose my balance and have falls and suffer many a bruise and knock from it. Sometimes it can appear as though I’m drunk but it is purely because I can’t control my stability.

I have many a scar now on my legs from my silly falls.”

Anxiety

“This is always an issue in the time in between my MRI scan and the results. I can’t control the anxious feeling until I have either seen my scan and have received the result and where the next year takes me. I am always anxious about where this journey is taking me as it has been a long haul and is far from over. Disappointment in how you are treated by the consultants and/or their registrars causes me more anxiety and stress as I feel as though I’m doing this on my own.”

For help with scanxiety, reach out to our support specialists – hello@brainstrust.org.uk

Strength

“The “burden of the strong” is something said to me once by my CBT therapist, describing me exactly. I am a very strong and independent person, but sometimes that comes with its own problems as the stronger I come across and how I try to get on with it and deal with it quietly and alone means that everyone around me thinks I’m OK, and it doesn’t become something they even think I have struggles dealing with.

But there are times when I don’t feel strong at all, and this in itself puts more pressure on me to remain ‘strong’, so as not to shock or worry any friends or family.

There are many times when I am scared, lonely, overthink things, try and deal with the physical aspects this has left me with let alone the mental strain. Recently I had some distressing news again from the hospital and whilst attempting to be ‘strong’ and ‘I can deal with this’, I couldn’t and after a few days I had a complete meltdown. I cried for hours and felt extremely sorry for myself. My husband’s reaction and friends too, was their shock and inability to cope with me ‘not coping’. Then I feel more pressure to pull myself together as they’re not coping. I’m tired of being strong for them as well as myself. But I struggle to ask for help and tell people how I’m really feeling.”

Debt & Work

“Following the initial diagnosis and due to my health I was off work for 6 months, I then returned on a phased return. I had a good job and was in management. I completed a higher apprenticeship in Business & Finance just before I got sick. I then collapsed at work a couple of times and was off sick for a further 8 months following inflammation of the meninges (aseptic meningitis secondary to the Meningioma) and struggled terribly when attempting a phased return to work.

I tried to work from home but was unable to cope. This led to my employment being terminated on the grounds of ill health and I was medically retired. This happened over a period of 3 years. We lost my income which was at that time a very good salary. This led to us being unable to cope with our financial commitments and led to going into a Debt Management Plan.

The pressures of losing a substantial income alongside my ill health put terrible strain on our marriage. The loss to me as a strong, independent and financially secure person was palpable and it took me years to accept it. In fact, I struggle even now to accept it and I am 11 years on. The frustration in being unable to contribute to the household income and the loss of the financial independence has been too much to bear at times. The guilt that is felt is overwhelming at times. I struggle to cope with stressful situations and feel as though my brain cannot cope with too much information at the same time and struggles to filter them out. The smallest of things can become stressful to me until I’m able to compartmentalize them. I have tried in so many different ways to work, whether it be voluntary or trying to earn some money, but my brain and body cannot seem to cope. I become too exhausted.

I feel in the most part that as I carry on my day to day existence, that people question why someone who looks OK and seems to be physically and mentally fine, is not working for a living! If I could explain to them that when I’m exhausted, stressed, in pain or emotionally drained that they won’t see me as I will be recuperating at home, but when I feel OK, I will try to continue with my day and pushing myself as much as I can.”

Brain Fog and Short Term Memory Loss

“I can get easily distracted & struggle to complete one task at a time, I find myself trying to do ten things at once, but not actually being totally aware that I am even doing it. I sometimes feel as though everything in my brain is muddled and I can’t make sense of it more so when I am really tired and/or stressed which just heightens everything even more.

My biggest thing that I struggle with is the short term memory loss. I get totally embarrassed when mid flow of a conversation my mind suddenly goes completely blank, and I have no idea or recollection of what I was saying. The person I am then talking to tries desperately to help to prompt me (those that know me), but no matter what they say I just can’t recall what I have been saying.

It may come back to me a little further on but by then the conversation has now moved on and I am spending that time trying to dig deep into that memory to remember, which manages to kill that particular conversation dead. But if this situation is with a stranger, then I am in real trouble as they would have no concept of what is happening. There are times that I manically interrupt people mid conversation which is something I know drives my friends mad but if my memory suddenly recalls something, I have to say it despite it not necessarily being relevant to the current conversation. If I don’t say it, it’s almost like it has to come or I may forget it forever. Terribly frustrating for people and embarrassing for me but I can’t seem to control it.”

For help in coping with the invisible challenges that a brain tumour diagnosis brings, give us a call on 01983 292 405 or email hello@brainstrust.org.uk

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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