When Nicola McFarlane was diagnosed with breast cancer in 2014 she bravely decided to have a mastectomy so she wouldn’t have to worry about the cancer coming back in her remaining breast.
But little did the 47-year-old from Dunblane know that it wouldn’t be cancer she would need to worry about ten years later.
Last May Nicola was diagnosed with motor neurone disease (MND).
MND is a rare condition that damages the nervous system over time, resulting in difficulties walking, speaking and breathing as the condition progresses.
And the project manager confesses the diagnosis was a cruel blow.
“It was honestly like getting hit by a train,” she says.
“When I was given the diagnosis I was like ‘no I can’t have that, how can I have motor neurone disease?’
“My partner Paul, 54, was with me and he was in tears. I just kept looking at him apologising.
“We were just in deep, deep shock.
“To be given this news felt especially cruel because I was at a stage in my life when things were really looking up for me.
“It was horrendous.”
She added: “Of all the things I had ever worried about in my life, MND was definitely not on the list.”
What were Nicola’s MND symptoms?
In November 2022 Nicola started to get a ‘tingling sensation’ in her body.
But she put it down to the stress of learning a new job and drinking too much caffeine.
Nicola had recently started a new job as a project manager for global engineering consultancy company Mott McDonald.
“It was like tiny little twitches I would get all over my body and I would notice them more at night,” she recalls.
“My eyelids twitched for about two weeks solid.
“I also noticed I would very occasionally have a very slight lisp.”
She also felt very tired but was still running 10ks and horse-riding, which was a life-long passion.
However, it was the impact on her hands which started to concern her.
“During the winter of 2022 I noticed that when my hands got cold they didn’t work very well.”
Nicola assumed it might be arthritis.
But at the start of 2023, Nicola started to notice some muscle wastage on her hands.
“On both hands under my thumb, the muscle had wasted away.”
MND diagnosis
It was the issues with her hands which prompted her to see her doctor.
“My GP was really perplexed.
“She ended up calling neurology and got me an urgent appointment.”
Before she saw the neurologist, Nicola had been googling all her symptoms and MND had come up.
But she hoped she might be wrong.
“Two weeks later when I went to see the neurologist at Forth Valley Royal Hospital he examined me and looked at my hands.
“Within ten minutes, he said: ‘You must be very afraid. What do you think this is?’
“I said ‘I think it is motor neurone disease.’ And he said: ‘I’m really sorry, but I think you are right.'”
Nicola’s cancer battle
The heart-breaking diagnosis came a decade after Nicola was diagnosed with early stage breast cancer.
In 2014, she discovered a lump in her left breast and it was recommended she have a mastectomy to treat it.
As both her parents had died from cancer, she decided to lessen her risk of the disease coming back.
“I chose to have a double mastectomy because both my parents died from cancer in their 50s,” she explains.
“I didn’t want to spend the rest of my life worrying about the cancer coming back in my remaining breast so I wanted to reduce my risk.”
Nicola continued: “To be honest I thought if anything, I would die of cancer.
“I never ever saw myself having a neurological disorder. I didn’t see this coming at all.”
Learning to cope with having MND
Nicola knew that in order to cope with having MND, she would have to accept her diagnosis.
But initially she found it very difficult.
“I had one day a week where I just couldn’t get out of bed – I just felt completely mentally overwhelmed,” she says.
“I would wake up and the first thing I would think was ‘I’m terminal’. It just felt very, very cruel.
“At the start I definitely had these ‘why me’ moments.
“But as time goes on, I started to accept it more because I have no choice ultimately.”
Being inspired by Doddie Weir
Around a month after her diagnosis, Nicola was worrying about the impact MND would have on her life.
But she found inspiration in reading about Scottish rugby player and MND sufferer George ‘Doddie’ Weir, who died in 2022.
In 2017 he revealed his diagnosis and set up the charity My Nam5’s Doddie Foundation that year.
Nicola says: “Reading about Doddie and everything he achieved helped me massively.
“I remember there was this one thing he said: ‘This is the hand of cards I’ve been dealt and I’ve just got to crack on with it’.
“That really struck a chord with me.
“I didn’t want to be an angry misery for the people around me.”
Nicola also met a friend who has lived with MND for ten years and he gave her a lot of advice about how to cope.
And she also joined an online group called ‘Patients United to end MND’ which has also provided support.
MND diagnosis impact on relationship
Nicola and her partner Paul van Baardwijk, who works as a computer programmer, had been friends for a while before becoming involved romantically in December 2022 – five months before her diagnosis.
“I have told him many many times that he doesn’t have to stay around for what’s to come.
“I have told him this is my nightmare, it doesn’t have to be yours.
“But he has never once, not even slightly, waivered.
“And even when I ask him: ‘Are you not afraid of the future?’
“He just says: ‘We’ll deal with it when it happens.
“He is amazing.”
However, Nicola admitted that having the disease has really affected her self-esteem.
“I’ve always been fit and active so it’s a massive identity change.
“When I met Paul I was really active – I was horse-riding, climbing Munros, wild swimming and running.
“And now I am not that physically able which has been very difficult to come to terms with.
“But he doesn’t see me any differently, which is lovely.”
Making memories together
After her diagnosis, Nicola and Paul decided to start making special memories.
This includes having holidays abroad to Florence, Spain and Paris and renovating their house in Dunblane.
“Paul’s also never been to New York so that’s our next plan and then New Zealand – where he is originally from.”
And as Nicola is no longer able to own and ride horses, she and Paul have now fostered two five-month old sausage dogs which has given her a new lease of life.
‘Taking each day as it comes’
Now Nicola is just taking each day as it comes and trying to focus on the positive, which isn’t always easy.
“The internet is full of people in the last stages of MND and I really dwell on those images,” she said.
“But I think like Doddie says I just need to crack on with today and worry about tomorrow when it comes.
“I could spend every day thinking I’m going to die.
“Or I can say do you know what I’m alive today, I’m walking and breathing – let’s just make the most of it.”
Conversation