Tracey Speight

Tracey Speight's Story

Sat 21 December

Tracey Speight (54), first began noticing that something wasn’t quite right in the early months of 2018. As written by Rosy Deacon, this is Tracey's story.
Tracey Speight (54), first began noticing that something wasn’t quite right in the early months of 2018. She was becoming forgetful, doing daft things and having hot sweats, but just dismissed it all as down to the menopause. Tracey is a hairdresser and began to worry that maybe something else was wrong when one morning she went to do a lady’s hair only to realise that she had already visited the day before and cut it. But she couldn’t remember. 
Her symptoms began getting worse and she found herself feeling dizzy, hot and needing to vomit, sometimes up to fifteen times a day. 
Tracey went to see a doctor in September 2018 and was initially diagnosed with a cardio problem. But though she was given medication to help, she just carried on getting worse, with her strange episodes getting ever more frequent. Finally, Tracey was admitted to hospital in the hopes that she would have one of her episodes where doctors would be able to observe her. At this point, she was having episodes every thirty minutes and so doctors managed to capture one on film. They began to talk to her about “lesions”, “calcification” and a “lump” and referred her immediately to neurology.
It was the neuro team who first carefully explained that she had a brain tumour, later diagnosed as a Diffuse Astrocytoma Gd II. Before going along to her first neuro clinic at the LGI, Tracey looked up the consultant she was set to meet, wanting to know all she could about what to expect. She went along with her eldest daughter and a long list of questions, but on arriving, she was told that the doctor she had been meant to see was unfortunately in surgery and instead she met Mr. Paul Chumas, a Consultant Neurosurgeon. Mr. Chumas immediately put her at ease and answered all her questions. He asked if she would be prepared to undergo an awake craniotomy, an operation which would require her to be conscious and Tracey was surprised at the very question – do people ever refuse? Unfortunately, they do, she was told. Some people are so afraid of the idea of being awake during surgery that they can’t go through with it. But Tracey had just one question for Mr. Chumas: “if I was your loved one, what treatment would you want me to have?”. He told her he would recommend this surgery. So, Tracey knew what needed to be done.
Tracey had been put so at ease from that initial conversation that she asked Mr. Chumas if he would take over as her doctor and perform the surgery, when it was time. He’d been easy to talk to and made her feel comfortable. Over the next three to four months, Tracey got to know the rest of the neurosurgery team as she underwent further testing and found that every person helped support her and get her mentally prepared for the surgery to come. They were such a lovely group of people, yet incredibly clever and good at their jobs. They made her think “I can do this”.
It was in her first meeting with Mr. Chumas in September 2018 that Tracey first heard about BTRS. She was given a booklet of information, including details for organisations who offer support for people dealing with brain tumours and Tracey decided to get in touch.
She first attended the Support Group Christmas meal in December 2018 and went along with her friend, apprehensive of what the evening would be like – would it be all doom and gloom? But there she found people who understood exactly what she was going through, who were asking the same questions and having the same worries. They could relate to her completely. Tracey had yet to have her first operation and realised how lucky she was to have found the charity so early on in her treatment to help support her through the journey. 
The LGI also offered the chance to be ‘buddied up’ with someone who had already had the operation. People are often so afraid to ask questions or talk about what they’re going through, but Tracey found that knowledge was power. 
As the surgery grew closer, Tracey was talked through every moment of what to expect. It’s a scary situation to imagine, being told that you’ll wake up with screws in your head, holding you in place so that you can’t move even a millimetre and with someone’s hands in your brain, but Tracey found that as she came to understand each step, it made her more comfortable. She trusted that her team were totally in control. And that made her feel in control.
No question was stupid and no matter what she asked, they answered honestly and truthfully, taking time to make sure she understood. When Tracey was woken up in the surgery, she found her team all around her, speaking to her and putting her at ease. They talked to her throughout, not only asking questions to help the doctors map her brain but making sure she was comfortable and even making her laugh. Somehow, they made the time fly.
The surgery itself lasted around ten hours, for which Tracey was conscious for about half, but even after all that time concentrating and working, Mr. Chumas came to check on her as she woke up and she was visited daily by others from her team as she recovered. She once asked them how they all managed to stay on their feet for such long, difficult hours and was told the answer: coffee. 
From January – October 2019, Tracey underwent a total of five surgeries, with her final one in early October. Her family and friends constantly told her how brave she was, to endure what she was going through, but Tracey had her team around her. She believed in them totally and they made her feel safe. They made her feel strong.
When Tracey was admitted once in an emergency, she waited until she’d seen her doctors before doing anything. With them at her side she felt reassured: “now I can face anything”. Even now, Tracey knows that if she has a problem or concern, she’s able to speak to someone from her team. 
Though Tracey had been attending the BTRS Support Group sessions, she was first inspired to start fundraising after hearing Dr. Lucy Stead (University Academic Fellow & Head of Glioma Genomics at Leeds Institute of Medical Research) speaking at one of the events about the need for a Tissue Bank in Leeds at the LGI to further research into brain tumours. Hearing Dr. Stead speak ignited something in Tracey and made her determined to help however she could; she’d received such brilliant care and was so in awe of everyone who helped her that she wanted to give something back. 
Tracey once asked how she could ever repay the amazing team at the LGI for all their hard work. They told her that all they want is for her to go out and try to live an amazing life.
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