Gently stroking her baby son Dylan’s cheek, Sarah Gaffney-Lang feels herself brimming with the pride and emotion as she knows he’s a true fighter.
“Like mother, like son” most people would say after hearing the astonishing story of this 32-year-old who has been through a rollercoaster few years – diagnosed with an inoperable brain tumour after having brain surgery awake.
Before going through chemotherapy and radiotherapy, Gaffney-Lang had her eggs frozen as she knew the treatment was likely to leave her infertile. But she and husband Matt, who live in Manchester, were overjoyed and surprised when she became pregnant naturally only months after her treatment ended.
Baby Dylan had a rocky start to life as he needed lifesaving treatment for pneumothorax and an infection and was incubated and covered in wires while hooked to machines. But like his mother, Dylan has proved to be strong in the face of adversity and the three of them are now enjoying life as a family.
It was after a day out at York Races in August 2016 with her then boyfriend, now husband Matt Lang and some friends, that Gaffney-Lang’s ordeal began. “We got back to the hotel in the early hours and I went to bed and had this huge seizure in my sleep.” Gaffney-Lang told HuffPost UK. “I wasn’t aware of anything. The first thing I remember is coming round in the hotel room with paramedics and hotel staff surrounding me.
“I felt very disorientated and confused. It was terrifying for Matt. He said I was going blue and couldn’t breathe and was having convulsions.”
Gaffney-Lang was taken to York General Hospital. As it was her first seizure, doctors didn’t do any tests but kept her under observation. They said it might have been caused by being up late and tired, or blood sugars. She was advised to see her own GP who reassured her that, at her age and health, it was unlikely to be anything serious and referred her to Salford Royal Hospital. But when a neurologist sent her for an MRI scan, it came back showing a brain tumour.
“It was a real shock,” said Gaffney-Lang.
“But it was a bigger shock for Matt, my family and my friends. I just went into survival mode and knew I had to deal with it.”
Gaffney-Lang had to have an “awake” craniotomy – with the aim of removing 95% of the tumour during surgery. “They knew the tumour was near the motor cortex on the right side so it controlled movement on the left side of my body,” she explained. “They wanted me awake during the surgery as they put an electric current through parts of the tumour to see if my body reacted. If my leg or my arm flicked out, they knew they couldn’t remove that part of the tumour.
“Every time they stimulated the tumour, I reacted strongly to it so it became clear it was in a place which was very vital.”
The surgery was scheduled to last six hours but ended up taking double that as surgeons tried everything: “The worst part was when they drilled into my head to make a second opening. I was fully awake and the noise was incredibly loud. At one stage, I asked the neuropsychologist if I could hold her hand for some comfort. I just wanted to get up from the table and get out of there.”
Despite their best attempts, doctors decided to abandon surgery and Gaffney-Lang was told they had been unable to remove the tumour as it would have left her permanently paralysed. Immediately after the surgery, she realised she had a “severe left-side weakness”.
“I couldn’t control my arm or feel my leg,” she recalls. ”At first I relied on a wheelchair, then a Zimmer frame and after that, walking sticks as I have been left with weakness on my left side.”
Gaffney-Lang was diagnosed with a grade two diffuse astrocytoma glioma in her frontal lobe, which controls cognitive skills and movement in the left side of the body. She spent her 30th birthday in hospital and although she knew her tumour was inoperable and unlikely to respond well to treatment, she was determined to keep positive.
And she admits that wearing make-up and nice clothes “every day without fail” into radiotherapy helped give her a real lift.
“You cannot control the situation, but you can control how you deal with it. I have always been into my clothes and love my bright red lippy,” she explained to HuffPost UK. “I just found it was something I was in control of and it made me feel better and look better. I even wore make-up when I was in hospital.”
She even ‘styled up’ her walking sticks and made them into fashion items by buying them in different colours and styles such as gold and leopard print. “It is about making it part of your personality and trying to look on the bright side,” she said.
Sarah and Matt have been together since she was 18 and he was 21 and they were already engaged at the time of her diagnosis, with plans to get married in Spain in autumn 2017. But they decided to bring their wedding forward and keep it a secret when they got hitched at Manchester Registry Office on 4 March 2017. “My diagnosis and treatment had made Matt and I realise that what we both really wanted was to be married to each other; it wasn’t about the party.
“It was just the two of us and it was really special and emotional.”
Gaffney-Lang wore a wig on her wedding day – but in hindsight she wishes she hadn’t as, after that, she embraced her baldness.
“At the time, wearing a wig felt like the right thing to do as I was newly bald and hadn’t really got used to it,” she said. “But I found wigs uncomfortable – especially in hospitals which are already hot. I ended up being proud of my baldness and feel it is a shame women going through the same thing feel they have to conform and cover their hair loss.
“I found it empowering and it was also very low maintenance – all I had to do is wash and go! I was quicker at getting ready which my husband was pleased about and it definitely saved me money on hairdressing!”
In January 2017, before starting radiotherapy and chemotherapy, Gaffney-Lang had her eggs frozen as she knew the treatment could jeopardise her dreams of motherhood. However, she only had time for one round of egg freezing before beginning treatment.
Her treatment ended in March 2018 and the couple were delighted when she got pregnant naturally just three months later. “Right from the start, Dylan was an amazing miracle baby!” says Gaffney-Lang.
However, it wasn’t the easiest of pregnancies. “I was anxious about whether my body would be able to sustain a life after all the gruelling treatment I’d had,” she says. Gaffney-Lang had numerous heavy bleeds resulting in 10 emergency scans and a hospital stay. “With every bleed, I panicked. Despite scans confirming a heartbeat and growing baby, I was worried throughout.”
Dylan was born on 8 March this year by planned C-Section weighing 7lbs 5oz. Soon after, Gaffney-Lang became aware his breathing didn’t seem right. He was transferred to the neonatal intensive care unit. The baby had suffered two collapsed lungs and was put in an incubator as he needed lifesaving treatment for pneumothorax and an infection.
“Seeing him was heartbreaking.” she remembers. “Covered in wires, he looked so tiny and fragile and we were so worried he wouldn’t make it. “Matt was incredible. We were both so upset but he managed to keep calm and supported me so much. He managed to keep abreast of all the treatment Dylan was having and understood what all the bleeping machines were monitoring.”
Happily, Baby Dylan made a remarkable recovery and was allowed home a few weeks later and is now five-months-old and thriving. Gaffney-Lang has also had good news on her own health as MRI scans both during and since her pregnancy have revealed her tumour remains stable.
She now has a blog, Upper Story Club, in which she shares her experiences as well as the tales of other women with brain tumours, and says the support she from charities including Brain Tumour Research and Trekstock (which helps young adults in their 20s and 30s affected by cancer) has been amazing.
“It has definitely been an emotional rollercoaster but it has made me realise how precious life is. I just live my life as normal and don’t spend very much time worrying about the brain tumour,” she says. “Dylan has proved to be such a fighter and we are so proud of him. It’s hard to believe that just one year after completing 18 months of treatment, we are a family. You just have to stay positive and keep hoping.”
For more information, visit: www.braintumourresearch.org
