The Brain Tumour Charity
“The charity’s support is amazing”
Beth Titterton, 26, from Stafford learnt first-hand how The Brain Tumour Charity provides invaluable help and information
“Getting in touch with The Brain Tumour Charity helped me to realise I wasn’t alone and to see for myself that many people get through it and have a positive outcome” – Beth
“Having somewhere to go for information and support – no matter what time of day it is – can make all the difference” – Eve
Five years ago, Beth was training to be a teacher when she experienced a range of debilitating symptoms that wouldn’t go away. “I was at university and also training to be a teacher. I had had a bout of labyrinthitis, an inner ear disorder, which wouldn’t clear up after the drugs were prescribed. I felt ill enough to be bed-bound and the doctor came to my home, worried that the symptoms were persisting weeks after they should have subsided. Eventually, I felt better and returned to my studies, but I started experiencing headaches in the morning, enough to wake me up, and severe head pains when I bent down or had to lower my head for any reason. The doctor referred me for an MRI scan on my ear to check if there was a lump there which could be causing the pain. What they actually found were two brain tumours.
“They were secondary tumours but strangely, after many tests, the primary source has never been found. My consultant now thinks the initial cancer may have started with a rhabdoid tumour – a rare childhood tumour which is almost never seen in adults. This is still being investigated but I’m resigned to the possibility that we may never know for sure. I was being treated at the Queen Elizabeth Hospital in Birmingham and Stoke Mandeville Hospital, where I underwent surgery to remove the tumours followed by a course of radiotherapy.
“I had many dark days when I felt isolated and fearful. Of course my family and friends were there for me and were incredibly supportive but they couldn’t truly understand how I was feeling. I came across The Brain Tumour Charity almost by accident when I was using social media. I found its Facebook page and asked to join. Getting in touch that way was instant and immediately helpful. I was instantly able to connect with people who were going through what I was experiencing, as well as people who had finished their treatment. Every case is different but it helped me to realise I wasn’t alone and to see for myself that many people get through it and have a positive outcome.
“Since that first growth was taken out, it hasn’t all been plain sailing. I’ve since had two regrowths, one in 2015 and one in 2016, which were removed with radiotherapy. I’ve been clear for three years now but still have scans every three to four months. It’s common for brain tumours to regrow and the knowledge of this is quite stressful to live with but I try to remain positive. I take comfort from the fact that many of the people I’ve met through The Brain Tumour Charity are managing and living with brain tumours, so there’s no reason why I can’t do the same.
“Just after I was diagnosed, my sister, Libby, and I joined the Young Adults Service – for 16- to 30-year-olds who have a brain tumour diagnosis or have been affected by one. Libby and I have always been close and it was great to be able to go to meet-ups and family weekends where we met other people going through what we were experiencing, as well as their families. There are lots of activities for everyone to enjoy including high-ropes, zip wires and plenty of arts and crafts for quieter moments.
“Three years ago, Libby and I became Young Ambassadors for The Brain Tumour Charity. I wanted to be there for others as the charity had been there for me. Libby has always been supportive and wanted to do what she could to help too. As Young Ambassadors we can empathise and support young people as we can directly relate to the symptoms and the emotional turmoil. We are there to answer any questions and offer support through the Facebook page. We also attend the weekends away, where we share experiences and discuss how we can raise awareness and help other young people. I’m proud to be part of a charity that is working so hard to improve the lives of those living with brain tumours. I cannot emphasise how much it matters that they are there for you in such difficult times.”
As Beth discovered first-hand, being told that you or a loved one has a brain tumour turns your world upside down. Eve Kelleher, the head of services at The Brain Tumour Charity, explains how it is on hand to support anyone affected in a myriad of ways.
“Essentially our remit is to be there for people,” Eve explains. “Those diagnosed with a brain tumour can have feelings of isolation and depression, they don’t know where to turn and find it hard to cope. Having somewhere to go for information and support – no matter what time of day it is – can make all the difference. Our peer-to-peer provision and closed Facebook groups mean people can seek help virtually 24/7. We’re here for anyone affected, including carers, parents, friends, all wanting to help their loved ones. As we know how important it is to get information out as quickly as possible, we have a team who build relationships with hospitals and ensure our information pack is given to newly diagnosed patients. It explains who we are and how we can help them as well as providing an explanation of their tumour type and what to expect in terms of treatment and care.”
Since it was set up in 2013, The Brain Tumour Charity has developed a number of services to help at different stages of the disease, from helping people to navigate the health and care system so they can process all the information and medical jargon to employment resources for people who have to tell their employer that they have a condition, or an education resource where parents have to inform the school of their child’s diagnosis.
“We also have a Children and Families team, where the child has the diagnosis and we are supporting the parents, siblings and the child,” Eve adds. “The team run the Family Days, where families get together to meet up, join in with activities, have fun and get support from their peers.
“For many it’s the emotional side of diagnosis that is tough, so we are also there on the end of the phone when they are scared and worried. Staff manning the helplines are very knowledgeable about brain tumours and how they impact people. They are measured in grades; high grade is probably a type of brain cancer and will be treated accordingly, and a low-grade tumour may not be cancer, but the impact is still very shocking with debilitating symptoms. We can help by giving the best information possible.
“We are also able to assist those who are looking to take part in a clinical trial. It’s a complicated process and we will do the research and liaise with the medical teams involved. Once a week, we have a benefits adviser from Citizens Advice available to talk to people on Universal Credit, carer queries or any employment and unemployment advice and entitlements. We offer a bespoke and tailored approach to each enquiry; if we can’t answer a question directly we will go away, research the matter and call the individual back – basically taking the worry and the weight from their shoulders. We want anyone affected to feel they can count on us.”
- More than 9,000 people are diagnosed with primary brain tumours in the UK each year, half of which are cancerous
- The average childhood diagnosis time was reduced from 14.4 to 6.5 weeks through the charity’s HeadSmart campaign
- More than 25,000 people have been supported by its Information and Support Services
Fundraising target: £62,500
Whatever money is raised in The Candis Big Give will be used to fund a number of services including:
Offering vital support to families, patients and carers who have been devastated by a brain tumour diagnosis.
Funding services including provision and training of a dedicated support team, a comprehensive suite of informative printed resources and an online chat resource where people can easily access support.
Funding pioneering research, raising awareness and providing support for everyone affected by brain tumours.
Make a difference
THE JESSIE MAY TRUST
What it does: Provides free nursing care to terminally ill children in their own homes.
Candis Big Give project: To reach more families to offer respite palliative care and support.
Location: Bristol and surrounding areas
Fundraising target: £22,050
REACH LEARNING DISABILITY
What it does: Provides informal courses and activities to people with learning disabilities.
Candis Big Give project: To enable adults with learning disabilities to reduce their risk of contracting diabetes.
Fundraising target: £40,000
RENNIE GROVE HOSPICE CARE
What it does: Provides care and support for patients and families affected by cancer and life-limiting illnesses.
Candis Big Give project: To provide the 24/7 care and support needed for young children to receive end-of-life care at home.
Location: Hertfordshire and Buckinghamshire
Fundraising target: £16,000
What it does: Offers support to children under five with additional needs and disabilities.
Candis Big Give project: Money raised will fund the charity’s Learn Through Play project, which will support the children’s educational development.
Fundraising target: £6,000
What it does: Supports those affected by childhood cancer.
Candis Big Give project: To develop the charity’s ROCK (Reaching Out to Cancer Kids) project.
Location: South-east England
Fundraising target: £8,000
NATIONAL MIGRAINE CENTRE
What it does: Offers accessible treatment to sufferers of migraines and primary headaches.
Candis Big Give project: To hire, train and support another headache specialist doctor for two sessions a week for one year.
Fundraising target: £16,000
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