In Charity News

Emma’s story: life after diagnosis

“Life may never be the same after the operation, but the key word is LIFE and I am grateful to be here for both myself & for my family and friends. If it’s an altered life going forward, then so be it.”

Emma was diagnosed with a brain tumour at the end of last year, and has been sharing her updates on her blog, detailing how she has approached life after diagnosis.

10.12.19 Plot twist

With every story comes a plot twist, and unfortunately mine comes in the shape of a recent brain tumour diagnosis. 2019 has been a tricky year so far including losing a close family member, so it was a huge shock to receive such news for me and my family. I’ve been a bit quiet on social media of late as have been finding it difficult to focus and concentrate, and this may have been one of the reasons why! But, why let things stop you. I enjoy writing, and even though this isn’t a health blog, it is part of our family life right now so I thought I’d write about what’s been going on (it’s quite cathartic too).

I am very glad that it has been discovered, and therefore won’t be allowed to grow any bigger, but the prospect of brain surgery is very scary. I shall acknowledge the risks and just be brave. Of course the thoughts of losing my eyesight, use of my facial muscles, paralysis and even death have crossed my mind, but it’s only natural to worry. The truth is that we are lucky to have access to excellent healthcare in this country and I read about all the wonderful things they can do now. Apparently I will need some sort of ‘spare part’ inside. Who knows what that’s all about, I look forward to hearing more from the neurosurgeon perhaps later this month or early next.

Little C knows that I have been ill, and that there is ‘a funny bone growing inside my head’ that the doctors might need to take out. She has given me a little purple bunny of hers to keep with me whenever I’ve been in the hospital, so sweet.

Going ahead with surgery?

So the good news is that they’ve found it and that they can operate. They can’t say whether it’s 100% non-malignant until they go in there and take a biopsy. Chances are that it is and it is slow-growing. However, as it is causing issues now, we need to serve the pesky tumour it’s eviction notice! They won’t be able to take it all out, so it may mean future surgeries. Life may never be the same after the operation, but the key word is LIFE and I am grateful to be here for both myself & for my family and friends. If it’s an altered life going forward, then so be it. As Elsa in Frozen 2 sings, it’s definitely a journey ‘into the unknown’. At the moment, I would just like to be out of pain and discomfort as I’ve been quite poorly these last few weeks and popping pills like sweeties!

23.01.20 Things change

At the end of 2019, the ophthalmologist and the neurosurgeon were talking about the complex surgery that I would need to have. However, after further scans and analysis, it looks like I may have been granted a reprieve for a while. It is in a difficult location which means that the risks of surgery far outweigh the benefits right now. They do not know how quick it is growing, as they have nothing to compare it to at the moment. The radiologists plan to scan again in 6 months and go from there.

They will operate as soon as it (1) gets bigger and starts to cause serious issues (e.g. problems with my vision, seizures etc) (2) it compromises my optic nerve or (3) my eye sticks out more. I’ve been fortunate enough to have seen two neurosurgeons on my journey so far, the second of which has offered a greater understanding of the situation in more detail.

Coping with anxiety

As you can appreciate, it is a touch scary to find out you have something growing inside your head that shouldn’t be! The anxiety about how badly something is wrong, and what could go wrong with your health with it being there takes a while to get your head around (if you pardon the pun). Also the thought that I may well need such a serious operation in future is quite daunting.

Being seen on the NHS is fantastic and great, but there is not much practical/emotional support. Sometimes I’m told to go and ‘google’ things, and sometimes I’m told not to. However as a human being, I’m naturally curious to understand everything that is going on, and also what may or may not be ahead.

Support outside the hospital – brainstrust

brainstrust have been absolutely amazing from the word go. First of all, they sent me a ‘Brain Box’ through the post.

The wealth of information contained in the Brain Box was amazing and I am so grateful to have received it. What astounded me as well, was the little extras they’d put in there too. A cup of tea each for me and my fiancée. Some shower gel and lip balm for a little luxury for me. And for Little C some beautiful hand-knitted cuddly toys. She was so pleased to receive the elephant and teddy bears. What a kind thought.

As well as the Brain Box, which to be honest has been a bit like a bible to me, Jodie, the brainstrust support worker for the West Midlands region has been a modern day angel. She has kept in contact with me, answering any questions that I have and even very kindly arranged for me to have a second opinion of my case in London. Just knowing that she is there to answer any questions I have, no matter how big or small is brilliant. She answers questions with the perfect mix of professionalism and empathy and I am lucky to have her!

Looking to the future

2020 is set to be a busy year, so even though this is part of my life now, it doesn’t define it. There are far more interesting things on the horizon. Our little girl starts school this year so we are ramping up for reception! Also the whole year is a blank page ready to fill with lots of happy memory making with my wonderful family and friends. We have got a wedding to plan and I also want to start writing more on my blog so there’s a lot to be getting on with. Fingers crossed the health behaves itself and the rest will follow.

Emma has set up a JustGiving page to fundraise for brainstrust because:

“It’s the least I can do to say a big thank you. brainstrust’s vision is that everyone with a brain tumour should feel less afraid, less alone and more in control. They provide invaluable support to patients and their families and are a definite worthy cause. If you can help, please do so where you can.”

You can visit her page and send a donation here. 

If you, or someone you love, has been diagnosed with a brain tumour, give us an email to 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