Nicki has had a long career in the music industry. She’s worked alongside artists such as Kylie Minogue, Take That and the Spice Girls, and as a judge on Popstars and Pop Idol with Simon Cowell, Pete Waterman and Dr Fox. Recently, Nicki’s presented RHS Chelsea Flower Show and Escape to The Country.
Life is hectic and all-consuming but last year it took a dramatic turn in May 2019. In recovery from a knee operation, Nicki experienced a loss of vision and slurred speech. “My symptoms were very sudden, over 24 hours. Initially doctors thought I’d had a stroke but scans revealed a golf-ball sized meningioma.”
“It’s the initial shock of diagnosis and then the shock when you tell people that’s even more distressing. It’s like a slap. When you have to ring people – your family – and tell them; it’s just hideous.”
Nicki only told close family and a few friends at first, partly as a coping mechanism for herself and husband Dave Shackleton, affectionately known as ‘Shacky’. “When I was diagnosed, it was the hardest week. When we got home, I said, ‘Let’s go and pack a bag in case I collapse suddenly,’ and he said, ‘You’re going to be fine.’ But inside I was thinking, ‘What if I’m not…’” she says. “You walk around like you’ve got a firework in your back pocket – that’s how diagnosis feels.”
Things then started to move very fast and surgery was scheduled for later that month. Shacky was Nicki’s rock throughout. She never doubted he would be.
“I said to Shacky that we needed to do our Will and he said, ‘Okay,’ and I said, ‘No – right now!’ That was a major thing. That was hard,” Nicki says. “We signed the new Will the day before I went into hospital and that was absolutely vile – sitting across the table with the most lovely person and wiping away a tear, literally as I’m signing and it goes ‘plop’ on the pages in front of me, and all the while him keeping it together.
“He’s been amazing. He’s much stronger than I thought he was going to be. In a way, it’s harder for those close to you. I could just think about me and how I was going to get through this, but for others it was just as hard. They’re trying to do the right thing and say the right thing and they want to be your emotional support, but what’s going on for them? They’re not allowed to say, ‘I don’t know whether you’re going to come through this tomorrow,’ or ‘What am I going to do if it goes wrong?’ They can’t say that to me – they’ve got to be strong, to be positive. If it had been the other way round and it had been Shacky, I’d have been in pieces.”
As the surgery date moved closer, the reality of what Nicki was about to face hit home. “The last few days before my surgery were so very dark. I just wanted to get the damn thing over with. I was literally on my hands and knees and Shacky was picking me up.”
Thankfully, Nicki’s surgery was successful and, after a brief hospital stay, the recovery process began. Nicki started to take tentative, but regular, walks outside in the spring air to help get herself back on track, but there were other, more surprising, effects.
“When I first saw one of my friends, her nose would be growing in and out and moving around, in a really comical, cartoon-like way. I was thinking, ‘This isn’t right – this is really strange.’ I was obviously still feeling the effects of the medication I was on. I didn’t tell my friend at the time!” she says.
“I’d also be in the hospital and I’d look out of the window and see this black shape jumping around the car park. Then I realised one of my get-well cards had a rabbit on it, so I think I was taking it from there. I hadn’t expected these effects. Luckily, they didn’t last long.”
Nicki now wants to share her story and to show people that if they reach out, people will reach back to help them. “Every person’s story is so different. A big conversation I often have with people is whether this sort of diagnosis and treatment has changed them – it’s the biggest concern how it affects people’s personalities and impacts them mentally.
“It petrified me when I was told of my own diagnosis and the risks the surgery may have. It’s important for people to know that although I’ve put on a very brave face, I was working my way through it in my own personal way. But I have, and have had, very dark days. A dear friend of mine, going through a similar life-changing experience, called it a ‘dark gift’. It’s not the gift you want but it’s the gift you have. You have to see it like that…” Nicki trails off and it’s clear the rollercoaster that was 2019 continues for her. She’s still processing her experience on her journey of recovery.
“I’m definitely more vulnerable now but I have to balance that with whatever else may be going on. Is it the menopause as well as my recovery? We now live in a world where we know more about the menopause and how it affects us. Thankfully, it’s becoming more recognised and talked about,” she says. “I can cry at anything. Is that the menopause or is it what I’ve been through? Who knows?”
Nicki noticed how much her everyday life, work, family and those around her were impacted by her diagnosis. “From a work point of view, I didn’t quite expect everybody to be so kind and supportive. I knew people would be shocked, like I was, but I thought once I’d explained they’d have more of a ‘come back and see us when you’re ready’ type of attitude. Luckily for me, they’ve been the opposite. People are much more supportive than you realise when you go through something like this. You need to take comfort from their genuine concern and friendship.”
Since May, life for Nicki has been a series of adjustments, both large and small. The surgery, treatment and subsequent recovery have had more of a profound effect than she could ever have imagined. “It’s made me a lot more grateful and hopefully a lot more patient with what’s going on in my world. When you walk down the street and maybe bump into people you often think, ‘You have no idea what I’m going through.’ Now I look at other people and think, ‘I don’t know what you might be going through.’ They could be walking down the street looking great but carrying the biggest burden on their shoulders.”
As 2020 begins, Nicki’s positive and enthusiastic personality is stronger than ever. She still has a hectic work schedule, but also a determination to reach out to others affected and acknowledge those who helped her get through last year, from healthcare workers, to family and friends, to the thousands of public messages of support.
“When I look back, 2019 isn’t a year I’d want to repeat, but that’s life, there’s nothing I could have done about it. I’ve been amazed at people’s reactions, both those close to me and people on the street who want to say hello and maybe share a personal story but without ever infringing on my space. People have been so kind and wanted to share their genuine warmth with me,” she says.
“It’s important for me to work with The Brain Tumour Charity and share my experience to help others know that they’re not alone in this.”
Nicki’s latest scan was stable and she’s continuing to support our 2020 campaigns, including Brain Tumour Awareness Month this March, as well as championing BRIAN, the pioneering free online app we’ve developed to help people cope with a brain tumour.
Nicki’s top tips for coping
1. Get outside. “Everyone who came round to see me had to take me out for a walk. That was the deal. You can come round but you’ve got to walk me. It was like having a dog! It’s winter now but spring is just round the corner. If you can, get out into the sunshine; get out into the open.”
2. Only 30 seconds of crying. “I have a 30-second rule of crying. If you’re going to cry when I tell you I’ve got a brain tumour; you’ve got 30 seconds and I will only cry for 30 seconds. Does it work? Most of the time!”
3. Give yourself permission to have bad days. “If you’re having bad days, let yourself have bad days. It’s like giving yourself permission; don’t fight against yourself. Tomorrow might still be a bad day and you’ve still got this condition, but you’re going to find one thing in that day that is good; one thing that you can hold on to.”
Nicki’s feature appears in the current issue of The Grey Matters.
Interview by Piers Townley. Photo © The Brain Tumour Charity / newboldphotography.com