“It’s a lonely, isolated tale, but I’m still here and slowly improving”

Jackie is a mum of 4 who is close to reaching 2 years post-operation on a pineocytoma. Jackie’s brain tumour journey tells of the isolation of having a brain tumour, and the impact that Covid-19 pandemic has had on the support people in the brain tumour community have been receiving. Despite the challenges she has faced, Jackie’s resilience shines through, and we’re grateful for her telling her story to the world.

Jackie’s story begins with a difficult start, she struggled with her mental health throughout her life, doing what she could to get by. It wasn’t until 2018 that Jackie felt her life take a turn for the better.

“I was in this limbo until 2018 when I suddenly felt so much better, I attended college and got my English G.C.S.E and trained as a level 2 teaching assistant.”

Unfortunately, a year later Jackie began to get symptoms that caused concern.

Jackie at Christmas just before her diagnosis

“Then 2019 came, I started having these ‘funny do’s’ I would go really off balance and hear a whooshing noise, I thought it was my blood pumping that I could hear, it was really strange, went to doctors and had ear drops. The sensations started getting worse as time went on, I went back to doctors several times, and to Accident and Emergency the times I actually collapsed. But nothing seemed wrong on the tests they performed.”

“Eventually by December 2019 I was referred to Ear, Nose and Throat, I had a lovely doctor who did multiple tests, he announced in January 2020 that he thought I had Meniere’s disease, I thought we had finally cracked it and I could start to take steps to becoming better, on my final visit he told me that I would need an MRI scan.”

Everything changed yet again…


After a long time searching for the answer to these symptoms, Jackie finally thought she had found the cause. But when she received a phone call from her doctor telling her there was a lot of fluid on her MRI Scan, everything changed yet again.

The process that followed was long, and Jackie continued to face a lot of uncertainty waiting for results, unsure of what she was going to find out. By March 2020, her symptoms had taken a turn for the worse. Rushed into hospital, Jackie then had more MRI scans and tests.

“I am having a particularly rough day, my husband is making tea, I am sat on couch, when I suddenly felt myself unable to move, I had fallen sideways and couldn’t speak, my Husband frantically called for an ambulance.”

“By the time they arrived I could move and talk again, they took me to A and E, eventually I managed to talk the doctor into giving me a scan as they were ready to send me home. An hour after the scan, a different doctor came, he said they would be checking me every hour and I had to go to Salford first thing in the morning. I argued saying I felt fine and a bit like a fraud as I was normal again, he chuckled nicely and said, “no you really need to be here.” I thought it odd but just lay down and rested.”

It was at this point that Jackie finally received her diagnosis.

“Later that day a lady doctor came to see me, she explained I had a Lesion on my pineal gland, which had blocked my CSF from draining and this was causing all my symptoms, she and her team were surprised I didn’t have more symptoms. The very next day I had a third ventriculostomy, which went really well, except I had a low-pressure headache for two days”

Jackie’s diagnosis came amidst the first news of lockdowns in the UK, whilst Jackie was processing her news and learning about her treatment path, the NHS and the rest of the country was beginning to feel the effects of the pandemic as we entered the first lockdown.

“Then things got weird, within a matter of hours anyone who was well enough to leave left. I was one of the last people on that ward, all the nurses were hushed and less jovial than usual, everyone was cleaning.”


Jackie after surgery

Jackie just after her surgery

“I went home, recovering nicely from the surgery, 10 days before my stitches could come out, we entered lockdown.”

It wasn’t easy going through treatment during the pandemic and Jackie felt the effects of isolation as she navigated her brain tumour journey.

“I had no real visitors or help or advise or friends to chat to, luckily, I did have my husband and 3 of my children at home. My big operation was delayed from early May to late June, not a big delay but still worrying. I had been prepared for at least a 2 week stay in hospital, doing research online and speaking via email to a lovely lady from your team.”

After delays and a worrying wait, Jackie went in for her operation.

“My operation started early on a Thursday morning, they telephoned my husband around 14 hours later saying it was successful and I was in recovery. I don’t remember much of Thursday night except a nurse stayed with me for hours, I remember the comforting feel of some leg massage boots though.”

The side effects of the operation were tough. Jackie found herself in a lot of pain, dealing with facial swelling and sickness.

“Monday morning arrived, and my nurse came and told me I was going home. My jaw was on the floor but I jumped at the chance, it was quite scary being the only patient on a ward. It was very isolating even with nurses, there was no one going through what I was, no one to talk or rant or console, just me.”


Jackie now, 2 years later, looking ahead with positivity

“My dad came and got and took me home. It was great being there, but also scary for me, my kids and my husband if something went wrong. We had no help and I looked like a monster, I had to literally lift my water eye bags up to see!”

Recovering in lockdown presented a lot of challenges, exacerbating the isolation that brain tumour patients often feel. Luckily with the support of her husband and children Jackie was able to recover well.

“As everyone was in lockdown we had no help, no visitors, no chance for our son to go to grandmas or anything. Just me looking horrific and my husband having to work and nurse me, (my older children 18 and 15 helped too). I could only see people if they drove by.”

“All went well though thankfully. Except one incident when I convinced my husband I could just have my medication without breakfast  – big mistake, I nearly passed out whilst on the toilet. It’s a good job he loves me!”

Jackie is just coming up to her two-year check-up and has spent the last twelve months home-schooling her youngest son. After a long and difficult journey, Jackie looks the future with a positive outlook ending her story with these words of resilience:

“It’s a lonely, isolated tale but I’m still here and slowly improving health-wise, my next battle is losing weight!”


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


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


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.


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


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


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