In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
“I want people to know what Mick went through because he kept so many things from everyone. It’s terrible that people have to go through the torture he did and that there aren’t more effective treatments, let alone a cure. We have set up the Micky Deans Trust to raise funds for Brain Tumour Research to bring hope to families in the future.”
Here is Mick’s story as told by his wife, Louise …
Mick was a wonderful husband – too good to be true, as I used to often tell him. He was very kind and caring, hard-working and a great family man. I know lots of people would say that about their husbands, but in this case it really was true. Perhaps the only criticism I could make is that he could be a bit stubborn!
Mick was a joiner, having trained in the trade since leaving school. 16 years before he died, he started his own business Baggeridge Joinery Ltd in Kingswinford with a partner. He built it up to be very successful, regularly working long hours to help finance doing up our home, which was a renovation project, as well as to provide us with lovely holidays. Mick worked like a Trojan for his family.
Mick enjoyed cooking and entertaining and following the Wolves. He was very well-respected and well-liked and was a healthy guy – I had only known him to go the doctor’s maybe once or twice the whole time I knew him.
We first met in one of the local pubs called The Chestnut and then, a while later, got stuck in a lift together on the way to someone’s flat in a tower block, having been clubbing in a group. I started to panic, but Mick soon made me feel calmer and our relationship really took off from there.
Mick had a fabulous group of friends, known as The Lads, who all got together aged 14 at Smestow Secondary School, remaining firm friends right until Mick passed away, aged 49. We lived in each other’s pockets, partying together and going on holidays together – seven or eight different families. Even today, The Lads and their wives and children are a constant in my life and our children’s lives and the very special and close friendship that we share is a huge support to us as we grieve for Mick.
Before we knew Mick was ill, we were doing a lot of work on our house, including converting the loft for our son, Harry, which meant that Mick was constantly taking boards up three flights of stairs. This was typical of Mick – he was always improving the home for his family.
One Sunday morning in October 2014, not long after we had all enjoyed a wonderful family wedding together, I awoke to the sound of my daughter screaming. Instinctively, she had run downstairs and found Mick fitting on the kitchen floor. He was shaking and frothing at the mouth.
I called an ambulance and the paramedics came straight round. They questioned me to see if Mick had been stressed or whether we had been arguing.
He was admitted to New Cross Hospital, Wolverhampton and came round to the news that he had probably had a mini-stroke and was referred to the appropriate consultant. Naturally we were very upset at the thought of this diagnosis.
Three weeks or so later, Mick’s brother Jason rang me with the awful news that Mick had had what turned out to be another major seizure, this time at work. Luckily he was caught by his business partner before he crashed to the floor. Because his business was in a different district, Mick was taken to Rhssells Hall Hospital, King Swinford, where he underwent more tests and was then referred back to our local hospital.
By this stage, the sheer worry and stress of not knowing what was wrong with Mick took its toll on me and I collapsed at work. Fortunately, my boss Hilary and work colleague were wonderfully supportive and bent over backwards to help the family.
Mick was given an appointment to see the stroke doctor at our local hospital in New Cross. He also underwent a whole raft of tests, including a lumbar puncture. We were left reeling when we were told that he could have MS or full-blown epilepsy.
It was by then January 2015 and one day when I was at work and Mick was still in hospital, he rang me, which was unusual as he never rang me at work. He said: “I am sorry to tell you this now, but can you come in? I think I have a brain tumour.” I was so shocked that they had told him on his own without me there. I rushed to the hospital in a taxi and held his hand. We were in utter shock.
The consultant took us into a private room and said that he was 99% sure Mick had a brain tumour. He was referring Mick to the Queen Elizabeth in Birmingham for his care. As we held hands, I watched a tear roll down Mick’s cheek. I had never seen him cry before. He whispered: “I’m sorry.” It was the measure of him – always thinking of me. I told him to never ever say sorry again and that we were in this together.
Mick was transferred to the Queen Elizabeth in Birmingham for a biopsy and to have the tumour debulked. We were informed that due to the nature and location of the tumour, they would be unable to remove it all. We prayed that it would turn out to be a low grade tumour.
I was so stressed by everything, that I was completely unable to drive. Mick’s Mum and Dad paid the £60 a day it cost for taxis for us to go backwards and forwards from the hospital.
The seizures continued in hospital. After he had returned home, it was like living with a ticking time bomb, watching for seizures which, at this stage, were not yet under control. When Mick looked at his scar in the bathroom mirror, the anxiety it caused him itself triggered a small seizure.
Mick was referred to an epilepsy specialist where he was told that once you have epilepsy, it changes your life forever. It’s so true and I now have total sympathy for anyone who suffers with seizures.
It was Jason who drove us to the Queen Elizabeth for the results of the biopsy. As soon as we saw the doctors’ faces along with a nurse, we knew the news was bad. Mick had a grade 4 glioblastoma multiforme (GBM4) and was given a prognosis of two to four years.
I broke down with shock, but my lovely husband, his face as white as a sheet, tried to be brave. Our world had turned into a living nightmare.
I had to tell Mick’s business partner, as well as The Lads. I really don’t remember how they reacted because I was in so much shock myself.
Telling our children was the hardest thing any parent could face. Mick and I decided to keep it as light as we could, while still involving the word ‘cancer’, as Lily was studying for her A’ Levels at the time and we couldn’t inflict too much worry on her young shoulders. She was in such shock her little legs were bouncing up and down as she listened. Harry went very quiet and retreated to his room.
Mick was put under the care of our local hospital for six weeks intensive chemotherapy & radiotherapy, which he had on a daily basis. He was told he wouldn’t be able to work as much. Somehow he got through the six weeks. I remember thinking: “This can’t be happening,” while he was having the chemo.
He managed the treatment quite well. I was convinced he would be ok as he was very strong and robust. The course of steroids gave him a big tummy and a round face, which he disliked and, due to the radiotherapy, his hair stopped growing, leaving it patchy. It was time to shave it all off.
Mick’s business started to suffer because he wasn’t able to do anything physical and mentally he was struggling with things like pricing – he wasn’t able to concentrate. Eventually he and his partner decided to fold the business up, so he lost that as well.
The brain tumour took everything away – his work, his ability to drive, drink, or travel abroad – it was heart-breaking.
We had to live on savings from then on, so we were on a strict budget and had money worries, not helped by the fact that the building work on the house was still going on.
Mick was continuing to have his seizure medication tweaked and would often say his head felt fuzzy, making him anxious that he was going to have a fit.
One day he was in the kitchen when he half knocked himself out while trying to talk to the builders. He had a massive seizure and I had to hold his head up to help him breathe while Jason, who happened to be there in his capacity as a carpenter, phoned the paramedics.
Another time Mick had a seizure, he was like an old record that had got stuck, repeating over and over again: “Why can’t anyone understand me?” All I could do was rub his back to try and keep him calm.
Mick was on two-monthly scans. The first scan after his chemo and radiotherapy, fortunately showed that the tumour had shrunk.
He was kept on temozolamide, the steroids and epilepsy medication, which was still being adjusted, and every couple of months we breathed a sigh of relief on getting the results of the latest scan.
Then Mick had trouble breathing – his neck had got very puffy – so the dosage of his steroids was reduced a bit.
I remember one time when we had gone for the results of a scan when again there had been no bad news. Mick always got very stressed in the build-up to the appointment and he was walking back to the car to go home when he said he felt funny. I could see that his right hand had started shaking violently, so I waited to see if it would pass. We had reached the area where the ambulances parked when Mick started having a full-blown fit. I ran back into the consultant’s office who came running with some oxygen and took him in. Mick was admitted, but later discharged himself and came home.
Every day when I woke up I was immediately aware of being in a heightened state of anxiety. I was constantly on alert for Mick’s seizures and looking at him for signs. Sometimes he had silent seizures which he was able to control somewhat by doing some deep breathing. Lily found it very upsetting seeing her Dad having seizures.
One day Mick got a letter from the hospice to say he would be under the care of a particular nurse. It broke our hearts. I remember Mick digesting the news, while sitting on the swing in the garden, recalling how before he was ill he always used to be busy.
By this time we had got a little dog, which I thought would help Mick’s morale. He loved it and used to take it for little walks.
In January 2016, we were walking the dog by the canal and it was very muddy. We were going down a little slope and Mick slipped. I heard his bone crack. It really felt like a curse had been put on our family. We were stuck in a muddy field with low battery and no signal. I remember Mick looking at me as if he couldn’t believe that all this was happening. It broke my heart.
Eventually I found a place where there was some mobile signal and we got Jason to come. He had to carry Mick. We discovered he had broken his ankle in three places, not helped by the fact that he was on steroids which makes your bones weaker.
One day I was in touch with Nikki Waterman on Twitter while she was on the immunotherapy trial and asked her for the name of her oncologist in London – I was trying to put some back-up plans in place.
Without Mick knowing too much, I was researching his condition and desperately searching for other options. When we next saw his oncologist, I raised the question of being referred to Nicki Waterman’s oncologist to look into the possibility of immunotherapy. Being the NHS, I had to stand firm and it took quite a lot of pushing and waiting before we got an appointment in London. Dr Paul Mulholland informed us that immunotherapy was very grueling and still in its infancy. He mentioned a trial that was coming up in Birmingham and his advice was to try and go for that.
We were fortunate to have family in Texas who were wonderfully supportive. They made enquiries at the big cancer centre in Dallas. One of the consultants kindly called me and told me to ring him if ever I needed to. He recommended for now Mick should stay on the temozolamide as it was keeping the tumour at bay for the time being.
By this time, Mick’s leg was getting better, although he was still in plaster. Lily came to me one day and asked me to go and look at Dad. His hand had started to shake and I tried to calm him by telling him it would pass. It turned out to be the worst seizure I had ever seen, with Mick convulsing all over his body.
Not long after that, the next scan revealed that the tumour was growing again and was in another area of his brain too. The news was devastating. My heart broke for this wonderful, brave man. Lily was in the midst of sitting her A’ Levels, so again we kept this bad news from the kids.
Mick used to hide a lot of things from The Lads too and put on a brave face. When I cried and held his hand, he would say: “I can’t bear what I am putting you through.” He would also say it was easier for him than for me, which I could never understand.
It was now very difficult getting Mick onto any trials, but in early July 2016 we heard he had been accepted onto a trial in Birmingham. It gave us hope again. He was on an infusion of the trial drug and was into the second week when I noticed that Mick had been very quiet for a few days. I remember thinking maybe he was fed up or feeling low, understandably.
The next morning I awoke to Mick scrabbling for headache tablets. This in itself was unusual as he didn’t like taking painkillers as he said they masked the symptoms of the tumour. I knew it was bad news. He said his head felt like it was splitting in two, so I called for an ambulance and also rang his Mum and Dad.
While we were waiting, I put a cold flannel on Mick’s head. I knew we were in trouble when he randomly said something like “wardrobe”. He looked to be utterly unconscious with his mouth drooped to one side.
Mick was rushed to New Cross Hospital. The paramedics insisted that I sit in the front of the ambulance, which only made me even more concerned. He was admitted to the HDU, with all the family around him. Harry didn’t realise how serious it was. We were told that Mick had probably had a bleed on the brain. I became aware of Mick rubbing my hand with his thumb – it was a special handshake that he normally did with Lily. That’s when we knew he could hear us.
The doctors scanned Mick and then took us into a little room. They confirmed that Mick had had a bleed on the brain and said: “He’s in big trouble. You should expect the worst. We could try and operate, but he might not survive it.”
We agreed to him being put into an induced coma ahead of surgery and were asked if we wanted to go in and say goodbye just in case. The kids were sobbing. Harry was embarrassed about talking to his Dad in front of anyone so he had time with Mick on his own and told him: “I’ll make you proud, Dad. You are the best Dad ever.”
I told Mick I would marry him again tomorrow.
Mick was blue-lighted to the Queen Elizabeth and although the operation was successful, we were told that they didn’t know what damage there might have been to his brain, or whether he would definitely wake up.
We were all living in one waiting room – the family and The Lads and other friends. At one point there were 36 people all in there together. The doctor came to tell us he wanted to see if Mick could breathe on his own, although he wasn’t hopeful.
One of the nurses started to cry with us. She said: “Seeing all you people waiting for him, if love could make Mick better, he’d be walking out of here!”
Mick was taken off life support, but there was no response for a couple of days. Then he displayed responses which were spastic-like – his brain had been irreparably damaged.
Mick passed away peacefully on 2 August 2016, three days before his 50th birthday. He looked like my beautiful man again, not troubled or anxious. I kissed him and told him: “You’ve got no more hospitals now, no more fits and no more worries.”
The Lads were all devastated. We had to delay the funeral for three weeks in order to ensure all The Lads could be there – some had to get back from a trip to America – and they all helped carry the coffin into the chapel. As Mick had been a huge fan of Madness and Scar music we put a fez on his coffin – it was the one we had bought for him at a Madness concert after he became ill and which he used to wear when he was mowing the lawn.
On 5 August, his birthday, I had all his presents ready so I phoned The Lads, the family and other friends and we got together in the garden to let off 25 balloons with messages for him.
The kids have been affected terribly by Mick’s death. Harry said to me: “I don’t know who to grieve for – the old Dad or the ill Dad?” I didn’t know what to say.
Lily has had a tattoo put on her arm which says “The King is home.” It’s what Mick used to say when he got home from work, but no one took any notice. It’s ironic really as Mick hated tattoos!
Lily, Harry, The Lads, family and friends have plans for lots of fundraising. We want to raise as much money as we can to help find a cure for this awful rampaging illness. We want a plaque on the Wall of Hope to make sure Mick isn’t forgotten.
I can’t begin to explain how much The Lads have helped me and the family. We live in a lovely part of Wolverhampton and the support has been amazing, but I still have days when I just feel so lonely – there are triggers everywhere.
When Mick passed away I remember feeling guilty at the sense of relief I initially felt. The anxiety and fear that had been present every day from the moment I opened my eyes until closing them at night, had vanished.
When I am a little stronger, I plan to make the children a memory box filled with things relating to their lovely father. I tell them in their darkest moments that some people have no father or a no-good father and that although your wonderful Dad has passed too soon, you have spent your childhood being loved and guided by the most wonderful of fathers. I hope it helps them.
It breaks my heart that Mick won’t see his grandchildren…
I want people to know what Mick went through because he kept so many things from everyone. It’s terrible that people have to go through the torture he did and that there aren’t more effective treatments, let alone a cure. We have set up the Micky Deans Trust to raise funds for Brain Tumour Research to bring hope to families in the future.
If you have been inspired by Mick’s story please donate via www.justgiving.com/fundraising/TheMickyDeansTrust or leave a gift in your will via www.braintumourresearch.org/legacy
The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.