Amanda Chalmers speaks to a mum who has found solace in writing after the loss of her son, Matthew Bates. Her book is a collection of letters written in the months after his death.
A Whitnash mum who lost her son to a rare kidney cancer has released a collection of heartfelt letters she penned in the months after his death in a poignant new book.
Letters To Matthew: Life After Loss was launched this month on what would have marked Matthew Bates’ 30th birthday.
The talented young journalist, who had recently graduated from Brighton University, was diagnosed with Type 2 Papillary Renal Cell Carcinoma in 2014, an extremely rare and aggressive tumour that affects only five per cent of kidney cancer sufferers.
But it was more than two years before the severity of the condition became known.
Mum Louise, 60, said: “I noticed when he came home from university he used to drink gallons of squash.
"I thought this isn’t right and he should go and see the doctor but he didn’t really have any other symptoms and, what with one thing and another, it was a couple of years before he actually went.
“He started going to see his local GP about three years later complaining about fatigue, weight loss, back pain and night sweats and even blood in his urine. They only tested him for diabetes and they put it down to a kidney infection and gave him antibiotics. We have since found out that blood in the urine can be a symptom of kidney cancer. In the end he went back to the doctors as he was losing weight and had a persistent cough.
“They finally ran some blood tests which flagged up something was wrong. He was immediately admitted to hospital where they ran a series of tests and a scan showed a large mass on his kidney.
Read more: Inspirational film about Whitnash man’s cancer battle shows the power of community and amazing friendship
“We were in complete shock. The bottom of our world just fell out. But then a survival mechanism kicks in. It still feels unbelievable today that this happened to our family. When he was told, the consultant came in and held his hand. I knew this was going to be bad news. But we were given hope. We were told that he could survive with one kidney and an operation to remove it could be the cure.
“When the consultant left the room Matthew was shaking. You could feel the shock through him. For half an hour we just held each other and we both cried.”
Matt underwent surgery to remove his kidney and there was good news for the family when a scan a few weeks later revealed no evidence that the cancer had spread.
“Once his kidney was removed and he was on his new healthy eating plan, you could see him slowly getting stronger and stronger,” Louise said. Then the scan came out clear and we thought, that’s it. It’s over.”
But a further scan told a different story and, as the family tried to come to terms with the latest blow to their hopes, Matt was accepted on a new trial immunotherapy drug at The Christie Hospital in Manchester, Europe’s largest cancer centre. Unfortunately, his body did not respond to the treatment. In a second trial, he was put on another targeted drug therapy, Nivolumab.
Louise said: “He responded to that and his soft tissue tumours were shrinking rapidly and some of them had even disappeared. But at that point we didn’t know he also had a tumour on his spine.”
Desperate to help her son, Louise, who runs a complementary therapy business, managed to source illegal cannabis oil, which, she learned, had showed positive effects for other cancer sufferers.
“I had read an article about a 14-year-old boy who had cancer. He was in a hospice with days to live and his mum started giving his cannabis oil and he started getting better. He got so well he had to leave the hospice and then over time his cancer was cured. She is quite a high profile person now in trying to legalise cannabis.
“Matthew took it for three weeks and it helped him sleep and boosted his appetite but he didn’t like how it made him feel. He was worried that if the hospital picked up drugs in his blood they would refuse him treatment so he wanted to come off it. I was always guided by him.
“We thought he was doing really well, he was starting to feel better in himself, he was getting his appetite back and then he woke up on Bank Holiday Monday August 2016 and said: ‘Mum, my legs feel really wobbly and I can’t pee.’
So he phoned up the Christie’s 24-hour hotline and a five minutes later he had an ambulance outside the door.
“They recognised the symptoms of spinal compression from what he’d told them and he was whisked into Warwick
“A scan showed the spinal tumour was getting bigger. We were just devastated.”
It was at this stage the disease really started to take hold and a subsequent operation on his spine led to a series of complications which left him paralysed and suffering from a severe infection.
Louise said: “I remember driving home from the hospital after the surgery a few weeks before he died and I am screaming at the top of my voice and banging the steering wheel.
“I think that was the moment when I finally realised I couldn’t control this. I couldn’t stop it.”
A makeshift hospital ward was set up at home but it was to be only two weeks before he returned to hospital after water developed in his lungs.
Louise said: “They took him in and he never came home again.
“But Matthew was so accepting of it all. He was in such a good place. When the doctors said to him 10 days before he died: ‘You’re not responding to the antibiotics and the cancer’s getting worse. There’s nothing else we can do for you now, we’re just looking at end of life care,’ he was just thanking them for everything they’d done.
“I thought, how can you be so calm? He was incredible. I don’t know how he did it.”
“On his last night in Myton Hospice we witnessed his bedside wedding to his girlfriend of nine years. The hospice team were amazing. They made a sanctuary and put flowers everywhere.
"It looked beautiful. It was wonderful to see Matthew’s face. I’m so happy he got his last wish.
“I stayed with him that night. I stayed awake and I held him all night. It turned out to be his last night.”
A keen sportsman, Matt played football for Norton Lindsey and Central Ajax, as well as proving to be a talented golfer and cricketer – playing for Stoneleigh Cricket Club and even being trialled for Warwickshire.
But when he became too ill to play it was his passion for music that had given him a new focus. He would spend hours in his dad Bill’s recording studio – a converted shed – in the back garden – learning to write and record his own songs.
This resulted in two CDs, the second of which was released just a few days before he died, in October 2016.
It was very soon after Matt’s death that Louise sought solace penning letters to her son.
“Afterwards I didn’t know what to do with myself and I started journaling as a form of therapy and getting my emotions out of my head.
“One day I was peeling the vegetables and all of a sudden I was surrounded by this energy of Matthew and it was like he was there with me. It was the weirdest feeling, like he was giving me a virtual hug and saying he liked my letters. And I got a picture of a book in my head. It’s as if Matthew was saying this needs to be a book Mum.”
In Letters To Matthew: Life After Loss, Louise also shares with readers inspirational quotes and insights into her journey of self-discovery. It also includes heartfelt tributes from Matt’s father Bill, 61, and sister Sarah, 33.
Both a book and Kindle edition are available to buy on Amazon.
Louise’s blog, which complements the book, can be found at www.letterstomatthew.co.uk
Louise said: “My wish is that my book helps people talk about grief in a much more comfortable way without all the awkwardness that comes with it. I want people to be okay about grief. I want to help other people understand what grief is.
"There’s also tips in the book about what to say and how to be. And hopefully, by reading the letters and sharing my experience of what it was like for me, it might help them in the future.
“This book is not about fixing people or forcing the healing process because, as the book explains, there is no cure for grief. Grief can only be absorbed, carried, experienced and cared for.
“You never get over loss, you just learn to grow around it and move on in a positive way. I’m still just taking it a day at a time.”