"Don’t cry mum, I’m not scared of dying"
Nick Spall was a talented musician whose band was on the verge of breaking through, when the cancer which was diagnosed when he was a young teenager, returned. Nick always said he felt he had a job to do and he never quite knew what it was. On the 10th anniversary of his death, his parents Pat and Adrian, and brother Matt, hope by sharing his story, they are doing that job by reassuring other people whose lives are affected by incurable illness. This is their story…
Nick was born ten weeks premature, spending the first six weeks of his life in hospital. His mum Pat was barely conscious and heavily sedated for three days after the traumatic birth.
“I didn’t know if either of them were going to survive,” recalls Adrian. “It was a heavy time. I was playing cricket on a Sunday afternoon way out in west Suffolk, and half way through the game I was called away and informed Pat had been taken to hospital.
"There was always music in the background. Nick could pick up any instrument, he just had this knack."
"So I rushed off and got to the hospital to be told ‘you’re just in time, we’ve taken Pat into theatre’. Four hours later I was allowed to see Pat briefly. I wasn’t allowed to see Nick – didn’t know he was Nick at that stage, we didn’t have the name. On Monday evening I was told ‘you better try to talk to your wife, we need you to name the baby because we’re not sure whether he will survive’. In the end we came up with Nicholas James. He weighed just 2lb 1 ounce.”
Nick was always getting into scrapes as a child – he was the boy who when grandma told him not to touch the teapot, he touched the teapot!
Lump of tar
He had what his parents affectionately called his ‘lump of tar’; a tiny mole on the inside of his ankle. It started to bleed when he was 12 and the biopsy did not come back clear. The doctors were not certain if it was cancerous or to do with his hormones, so did a further removal, and the Spall family carried on with life.
A family holiday in Corfu, which became a very important summer destination, was arranged and enjoyed. There were many frolics in the sea, and lovely memories for the four of them, especially when the sea was very rough.
Matt remembers one special occasion when Pat lost her footing, disappeared under the waves, and was swept back onto her feet by her two boys, one on each arm, laughing together.
But when he was 14, Nick came home from school one Friday complaining of a lump in his groin. By the Monday the family had seen a specialist and Nick was operated on that week.
Pat recalls: “The surgeon came to tell us ‘I’m so sorry but the lymph nodes are infected. I’ve done what I can and I think I’ve taken them all away but there’s a 94% chance it could come back’.
“Nick had to be told it was the worst thing that could have happened, that his chances weren’t very good. He asked if he was going to die. I didn’t know how to answer so we had to ask the staff to come in and talk to him properly about it. He was an intelligent boy.”
Nick made the decision at 14 that he wasn’t going to have any treatments. He would take his chances because he felt anything they could offer was going to make him feel unwell. On one of his regular visits to his specialist, the doctor told him to go and get on with life and enjoy himself, and if anything happens, to go back.
So Nick continued his school years; an A* student all the way through GCSEs and then started his A levels. One day, he went missing. He had left a note in the middle of his desk during his mock exams which the family believed to be a suicide note. After a frantic search with help from his Macmillan nurse, he was found in Southwold with a group of friends. Pat remembers: “He told us ‘I can’t go back there, I can’t do that’. So right Nick, what do you want to do? ‘Something with music’ he replied to me.”
Nick’s passion for music started in primary school with the violin, but once his older brother, Matt, bought his first stereo system, the two of them began sharing their music and together found heavy metal. Nick was hooked and began drumming.
He changed his studies to a practical music course at college but, for a number of reasons, soon left, and with some other musicians formed the band Jack’s Family where he was the drummer. Later in his 20s, he would join a second band, Bad Moon. Music was where he wanted to go with life.
Adrian explains: “There was always music in the background. Nick could pick up any instrument, he just had this knack. Nick and his brother Matt both loved their music. The two of them were so close. Like lots of brothers they did stuff together and they talked to each other, they worked with each other.”
Pat continues: “He went through his teens with bouts of what we now know was depression. He would get in such a state because he couldn’t explain how he felt. We’d sit in his room and talk about things and cry. They were difficult times. He managed to pull himself through most of it but I think deep down he always knew the cancer was going to come back. And he had to do his bit for the world...”
"I think deep down he always knew the cancer was going to come back."
Adrian explains: “He thought intensely about life and his place in the world. He felt he was here for a purpose. He had all this going through his head, and this was where all the big conversations started.
"Out of the blue he would just start talking about the world, what was wrong with it, what he wanted to do about it but how he couldn’t because he wasn’t in a position of power, couldn’t make changes, and ‘the banks were going to ruin the world’ he predicted.”
“He was always trying to tell us how the space-time continuum worked,” reminisces Pat. “We still have the diagram!”
The natural world never lost its importance for Nick and he could often be found outside at night watching the stars. He began working in an independent shop stocking crystals and candles amongst other items which was run by future family friend Jan. Pat says: “He loved the shop, and especially the lavender and sandalwood candles they stocked; a smell which now helps us feel better and close to him when we’re having a down moment.”
Tests came back positive
Jack’s Family really took off and mum and dad enjoyed being the drummer’s roadies, loading and unloading the kit at gigs around the country. By their third CD ‘One Big Disguise’ the band was beginning to get noticed in America.
But in 2008 when Nick had just turned 26, the family’s fears which had always been simmering below the surface, were confirmed.
Adrian explains: “We used to visit him on a Saturday and wander around Colchester and buy food, spend time together, or we would drive to Mersea Island, have lunch, and walk by the water. He told us when we went to see him one Saturday that he had found a lump on his ribs.”
Nick’s parents encouraged him to make another appointment. They received a text from Nick a few days later saying he had been sent immediately to the hospital for tests. They all came back positive.
Pat was devastated: “When he went outside in the car park, he lit up his rollie [cigarette] and he said ‘I’ve got three months’. I couldn’t avoid tears. 'Don’t cry mum, I’m not scared of living, I’m not scared of dying, but I am scared of the process' he said to me.”
Pat and Adrian managed to contact Matt at work, who was given permission to leave immediately. They collected him, and drove to Mersea Island to tell him the news and spend time together. It was also on that day Nick acquired his trademark hat.
“Nick needed something to shade his eyes as they were becoming increasingly sensitive and he didn’t want a baseball cap or a golf cap or a cricket hat; he just wanted something a bit different,” says Adrian.
“It was in Ipswich where he found the hat," Pat continues. "He wore it everywhere; when he went in for an MRI he said ‘here mum will you hold my hat?’ Which I did.”
Adrian remembers with a smile: “Everywhere he went, the hat went with him. And now the hat sits on his kick drum in his bedroom and every time you go in, you sort of give it a stroke; the oil in your hands is good for it because it is a leather hat.”
“Everything that could be wrong, was wrong,” says Adrian. “The doctor sent Suzanne, the nurse, to see Nick. She suggested Nick saw the counsellor at the Joan Tomkins Centre.
"He said no to start with; like us he was scared of what a hospice meant."
“Nick said to us ‘I’ve got an appointment to see a chap at some hospice in Colchester; St something’. I remember driving into Colchester all those Saturday mornings and there’s the roundabout with the sign that says St Helena Hospice. So we picked him up and sat in the car park and waited. That was the first time we had any contact with St Helena.”
Nick continued along day by day supported by his family and friends and with home visits from the nurse.
“He began getting worse and worse,” Pat recalls. “The medicines were just… 35 pills a day it got to. And we later discovered he had a tumour in his throat and neck which meant he was having all this trouble trying to get them down. At this point Suzanne intervened and said ‘we need to take you to The Hospice to get your medication sorted and then you’ll be able to get on with your life.’ He said no to start with, like us he was scared of what a hospice meant.”
Adrian explains: “This was ten years ago and it was something people didn’t really talk about. Hospices were these amorphous places that weren’t hospitals, they weren’t care homes; what were they? We were all in a state about it and what it was going to mean.”
The drum kit
Nick stayed at The Hospice and his electric drum kit went with him. He even offered lessons, pinning a note on the door:
Friends and family helped Nick to make memories. One friend in particular knew Nick Barker [pictured below with Nick and Matt], the former drummer from heavy metal band Cradle of Filth, who had inspired Nick to become a drummer. Nick B was invited to The Hospice to see Nick.
Adrian remembers: “Nick Barker spent the whole afternoon with us and Nick, talking to him about his life and playing some of his rhythms. Nick B said to him ‘do you want to have a go? Come and sit on your throne, just pick up your sticks, give it a go’. Nick did and after a few minutes Nick B said ‘I like that pattern you were doing at the start. I might have to steal that from you’. Nick smiled and agreed.
“It was wonderful. Nick B missed his train because he spent so long with us! He was so lovely with Nick and got him on his feet and onto his drum kit, and it did Nick good to hold his sticks again: ‘This is who I am, this is what I do, I am a drummer and I can still do a little bit.’ Two minutes and he was absolutely exhausted, but he was Nick again.”
Nick had radiotherapy to try to make his throat feel better and when his throat got so bad, he asked for something cool to soothe it.
Adrian recalls: “There’s an ice machine in the dining room so I went and got him some crushed ice, and he said ‘oh that’s lovely’. So from then on whenever he needed something to help his throat, I would go down to the dining room with a glass and fill it with ice.
“The mountains of ice became a bit of a joke with us. We must have used the ice up every day! It was something that soothed his throat, got some fluids in him. It was a little thing between us and it was one of those special little things. I would be seen wandering The Hospice at all hours with my glass!”
"It’s lovely because I’m with my folks and we’re together."
Hugs are the new gold
On a plaque by a special tree in the cemetery, it says ‘hugs are the new gold’. Adrian explains: “After the first few days in The Hospice when he’d found his feet, he got everybody wrapped around his finger; the doctors, the chaplain, the pinkies, the maintenance men, the volunteers, the girls on reception…
“Everybody just took to him and he began to think ‘I’m being really well looked after here. It’s lovely because I’m with my folks and we’re together and I can’t thank people enough, so they need sweets, they need cakes...’
“I don’t know at which point it started while we were there, but suddenly everybody who helped him in whatever way, had to have a hug. Hugs don’t cost anything. He thought ‘if I give somebody a hug, it’s my way of saying thank you. I’m giving something of me.’ So everybody had hugs. Hugs were for everybody and anybody whatever they did, however big, however small, he would give people hugs.”
Pat adds: “And when we didn’t know what to put on the plaque in the cemetery, one of the nurses came up with it; hugs are the new gold.”
Adrian continues: “There are little phrases which were so Nick, like ‘there is another star in the sky’. Nick and Colin, his mate who still lives next door to us, spent hours together. They went everywhere together and spent hours looking at the stars, talking about stuff. He’s got a star up there, Matt bought a star for him.”
The family left The Hospice to go shopping for a few hours, where Nick spotted an Argentina football shirt he had to have because of the colours, much to England football fans Matt and dad’s disapproval!
Pat continues: “Nick’s friend Sarah took a photo of him wearing it in the former smoking room, where he loved to sit and ponder whilst looking out on the garden. He would get up from his bed, take one of us by the hand, and go into the room, and chat, or just fall asleep. Many important conversations were had there along with a rollie, which were soothing for him - the doctors had advised him that this was not the time to give up.”
The Cleveland Browns American football team also featured in his shirt collection in his room in The Hospice because the owner of the team was the owner of Aston Villa football club - and he liked Aston Villa because he liked the colours!
Pat explains: “My brother contacted the Browns in America for some team shirts and said ‘send them immediately’, which they did. We have photos of him wearing one at The Hospice with me holding up the other [pictured left]. And he was cremated in one of them too.
"Everyone wanted to do nice things for him which we find mind blowing even now. He was special to us and we’re flattered he was special to other people too.”
Pat remembers the last few hours the family spent together. They had planned a walk at the weekend with Nick in a wheelchair and the three of them, Adrian’s brother and his wife, and friend Colin, through the country park near The Hospice. But by the Thursday night, Nick took a turn for the worse. On the Friday, nurses moved a bed into Nick’s room for his mum to sleep next to him. She remembers: “I held his hand and the nurses kept coming in throughout the night to check on him. And there we were, hand in hand, both asleep.”
It's just a road sign
“Talking about cancer,” says Adrian, “it’s a hideous disease, it’s frightening. We were all scared, we didn’t know what was going to happen. We didn’t know what St Helena was like, we didn’t have any concept about what sort of place it was, what sort of people they were.
“It’s just a road sign saying go in that direction. When the nurse told us she was going to try to get a bed in The Hospice for Nick, we thought ‘what’s going to happen?’ But actually we had lots of laughs there. There were people who just embraced us. They talked us through what was happening and what they thought was going to happen to Nick. Nothing was ever rushed. We, but especially Nick, were given time to sort out our thoughts and fears and questions with medical or other staff.
"We were enveloped, almost like a big hug. If we can allay some fears and explain how families can be helped, then we’ve done what Nick would want us to."
“The care and the compassion from everyone at St Helena, not just the medics. And the love and the cherishing, of whoever is in there, whether they have a huge extended family or are on their own. We were included in everything. If by doing this, we can help make other people less fearful…”
The music goes on
Nick always said he felt he had a job to do and he never quite knew what it was. Adrian explains: “He said to us that when he got better, he wanted to raise money to say thank you. He also wanted to be able to visit those patients who had no-one, unlike himself who had friends and family around him all the time.”
On the 10th anniversary of his death, his parents hope by sharing his story, they are doing that job by reassuring other people whose lives are affected by incurable illness.
“What I find the hardest,” Adrian says, “is when you hear somebody say time is a great healer, you’ll be better after a while… Time isn’t a healer, you just learn to live your life slightly differently. Time doesn’t make it right, you just learn to cope with having a huge hole in your life. Not just the physical side of it; knowing you can’t text him or ring him and say, are you ok?”
Pat agrees: “Or have just one more hug. It’s tough; we still cry but that is part of it and you have to go with it. And above all it’s important that when you feel the emotion rising you have to let it go. You mustn’t hold it in, you mustn’t stifle it because if you do, it will eat away at you.
“We’ve got to live our lives and have our time now to do all the things we want to do. If you’re in this position, Nick or whoever the person is, will be the elephant in the room that nobody dare talk about. Don’t cut him off as though he doesn’t exist, because that’s one of your fears, that he’ll get forgotten. They think if it upsets you they shouldn’t say it; but if it upsets you, you are releasing something. Because there is a lot of anger straight away afterwards.”
Adrian adds: “Whatever we do, Nick will come with us. His ashes are in places he loved, or wanted to visit. Some of his ashes are in Iceland, a place he so wanted to see but was too ill to manage. We plan to go back to Iceland at some point and be with him by his waterfall, mountains and glaciers. Whatever we do he will always be with us.”
"It’s got to be music at the end, hasn’t it?"
Pat and Adrian have been raising funds for St Helena since Nick died, and are topping it off by hosting a musical event* to celebrate Nick’s life, ten years on.
Pat says: “We were allowed to bring a docking station to The Hospice and all sorts of music was going on, including Leonard Cohen’s Hallelujah, which will feature during the evening.
“It’s got to be music at the end, hasn’t it?”
*An evening of classical and light music, Saturday 6th October 2018 at 7.30pm, The Parish Church of St Anne & St Laurence, Elmstead Market.
Tickets from Crystal Threads, Unit 2, Old Forge Court, Elmstead Market, or call the St Helena Fundraising Office on 01206 931 468.
To contact the St Helena Fundraising team, please telephone 01206 931 468 or email firstname.lastname@example.org , Monday to Friday between 9.00am and 5.00pm.
24 hour advice: SinglePoint 01206 890 360
SinglePoint is a 24/7 advice and support helpline which helps to coordinate an individual’s care with the hospice. SinglePoint also works alongside other healthcare services such as GPs, Community Nurses or Specialists.
To contact a patient at The Hospice please find the address and telephone number below. Phone calls can be made to patients at any time of the day or week. You can contact Inpatient Services 24 hours a day, 7 days a week.
The Hospice, Myland Hall, Barncroft Close, Highwoods, Colchester, C04 9JU
Telephone: 01206 845 566
You can contact The Hospice in the Home Team Monday to Friday, between 9.00am and 5.00pm on:
Telephone: 01206 845 566
Tendring community team
Telephone: 01255 221 222
You can contact the Joan Tomkins Centre (Colchester) Monday to Friday between 9.00am and 5.00pm on:
Telephone: 01206 848 163
Fax: 01206 752 245
You can contact the St Helena Tendring Centre (Clacton) Monday to Friday, between 9.00am and 5.00pm on 01255 221 222
Tendring Centre Postcode for Sat Navs: CO15 1EU
The HR Team can be contacted Monday to Friday between 9.00am and 5.00pm on 01206 931 466
To contact the St Helena Finance Team please telephone 01206 931 450 Monday to Friday, 9.00am to 5.00pm
The Volunteer Services team can be contacted Monday to Friday between 9.00am and 5.00pm on 01206 931 466
For all media enquiries between 9.00am and 5.00pm, Monday to Friday, please phone the Marketing and Communications team directly on 01206 931 464
If you, or a member of your family has a life-limiting illness and would like to discuss whether St Helena care services can help, you can contact the SinglePoint telephone service 24 hours a day, 7 days a week on 01206 890 360
To contact the St Helena Bereavement Support team please telephone the bereavement helpline: 01206 984 274, Monday to Friday, 9.00am to 5.00pm
The Learning and Development Centre is open Monday to Friday between 9.00am and 5.00pm and can be contacted on 01206 851 560
For more information on the St Helena Service User Group please contact Chair, Ken Aldred on 01206 751 397
To contact the Lottery team please call 0800 285 1390 or visit the website here, Monday to Friday between 9am and 5pm.
If you would like to write to or visit the Lottery team, the address is: Your Hospice Lottery Office Unit 6 The Atrium, Phoenix Square, Wyncolls Road, Colchester CO4 9AS.
Feedback, comments and complaints about St Helena care and support services may be made verbally or in writing to: Director of Care, St Helena, Myland Hall, Barncroft Close, Highwoods, Colchester, CO4 9JU. To speak to a member of our team, call 01206 845 566