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.
Devoted husband and dad John Annis was diagnosed with a grade IV glioblastoma brain tumour in December 2013. One year later, he lost his life after collapsing in the shower room at home in the arms of his wife Julie. He was 48. John and Julie were teenage sweethearts and had been married for 27 years. Their daughter Sophie was just eight when she lost her dad.
John joined the Royal Electrical and Mechanical Engineers in 1986 when he was 20. He had been unable to get work and decided that joining up would enable us to marry. I was 16 when I met John and 19 when we were married in 1987. It wasn’t until 19 years later that Sophie came along. It was a bit of a surprise. Before that we had been busy travelling the world with the army and were posted to places including Berlin – we were there when the Wall came down in 1990, then we were posted to Brunei. As a result of the posting to Brunei, which is part of the island of Borneo in South East Asia, we were able to travel to other places like Australia, Hong Kong, Bali, Singapore and Thailand. These were happy times.
We had never felt ready for a baby before, but when it happened the time was right with only two years left to do in the army. After being abroad we came back to the UK with postings to Thorney Island in Portsmouth and then back up to York (where we bought our first home). We were then posted to Maidstone, Kent. John’s last posting in the army was Canterbury, so we remained in our home in Ashford, which was where Sophie was born in 2006. We were happy there but with the arrival of our baby I wanted to be nearer to our families and so we moved to Great Ayton, North Yorkshire, in 2007 when Sophie was one-and-a-half.
John was a fit man. He had enjoyed playing football in his younger days, was good at DIY, enjoyed gardening and had been a keen trout fisherman since he was just four-years-old. Fishing was his passion. He worked as a mechanic for Arriva Buses in Whitby for a few years but shortly after losing his father, aged 87, in January 2013, he changed jobs.
He was working at Boulby Potash Mine when he took ill in February. John was very defensive about being ill and he was good at hiding things and wouldn’t talk to me about what was happening to him.
He started having terrible headaches from around October time onwards, getting unbearable in November. Then in November, out of the blue he had a couple of small seizures. I told him he had been looking tired and drawn and I felt something was wrong but he wouldn’t listen. He had lost interest in everything. He didn’t do the garden anymore, wouldn’t do jobs around the house, and just wasn’t interested in me or Sophie. He just worked and slept with nothing in between. He blamed the shift pattern and working a mile underground.
By November he said he had a dreadful smell like battery acid in his nose and head. To me, this was the warning sign – I remembered watching a film and the woman could smell burning rubber, she had a brain tumour. This was significant.
On Wednesday 27th November he had a big seizure while he was at work at Boulby Mine. He was sent home and he went to the doctor who said he had a virus, prescribed paracetamol and told him to rest. John went to the doctor again two days later as he was no better. They said the same thing. The next day, John started vomiting, he was off his food and things were so bad that he cancelled a boys’ weekend away in Newcastle. He refused to let me take him to A&E that Saturday night.
Eventually I got him to the walk-in medical centre in Guisborough on Sunday 1st
December. While we were there he was having seizures every 15 minutes, you could set your watch by it. He was very grey and they did some tests to see if it was his heart. It was obvious something was very wrong but I didn’t think it was his heart. He was taken by ambulance to James Cook University Hospital in Middlesbrough, where the seizures continued. He was sent home that night after tests, none to his head though. We were told to return on the Monday morning for a head scan.
To me, he looked like he was having a stroke with every seizure that Sunday night. We knew it was his head. Eventually he had a scan on 2nd December and, after a long wait, we were taken into a private room. We knew that was bad. We were told that they had found something and it was a tumour on the brain. That is when our world fell apart. John’s sister had died, aged 46, some ten years before, from cancer, and telling his other sister and mother was not an easy task.
He stayed in hospital for 12 days and was put on steroids to reduce the swelling in his head, to try to control the seizures and headaches. On 10th December he had neurosurgery to remove the tumour. After 12 nights in hospital, John came home and the clips in his skull were taken out on 18th December.
The following day we had a meeting at the hospital to be told that the operation had gone well and 90% of the tumour had been removed. However we were told that it was an aggressive grade IV tumour. I remember the consultant saying: “It’s not where it is, it’s what it is – and what it is, is a grade IV aggressive brain tumour”. We were numb; we didn’t ask how long he had got and they didn’t say. It was all about the treatment now.
We had a good Christmas 2013 for Sophie, not knowing this would be John’s last.
He started treatment in January 2014 firstly having to have a mask made up for the radiotherapy treatment. John underwent six weeks (30 sessions) of radiotherapy followed by chemotherapy in the form of Temozolomide tablets at the same time, to hit the tumour hard.
He reacted badly to the first cycle of chemo after the radiotherapy had finished. He ended up hospitalised for five days. He continued with another three cycles of chemo, recovering enough in between to be able to manage quite well.
In February 2014, my mum’s mother died in hospital, aged 88, leaving my granddad, aged 92. John was also diagnosed with a DVT in his leg, at the same time, which travelled up to his groin. This was yet another blow. John now also had to endure injecting himself into the stomach for the rest of his life. He was black and blue and was going through enough, without this on top. I had never seen so many bags of drugs and medication in all my life.
We endured a horrendous wait until 8th July for another scan. On 16th July we were told by the consultant team that the scan showed that we were back to square one. The tumour or “cyst” as it was referred to this time, was back and had shown significant growth since the first operation just seven months ago. The radiotherapy and chemotherapy hadn’t worked. John opted to go ahead with further surgery and more drugs. John’s second brain surgery was on 29th July 2014.
We never hid the truth from Sophie and, towards the end, I explained to her that daddy wouldn’t always be around and there would come a time when it would just be her and me. I wanted to prepare her the best I could. She could see things were very bad and had seen her daddy falling over a lot. John’s balance had gone and he would get dizzy and couldn’t bend down. Things were very difficult at home. John had changed so much on the steroids, we argued a lot and Sophie would shout at us both to stop.
It was just a terrible time for us all. We managed to get away camping for four days but the weather was dreadful and only served to reinforce our gloomy mood. John was taking PCV, a new chemotherapy treatment after the second operation, but it made him quite ill and he didn’t really recover in between cycles. However, he could manage to fish. I would take him up to the village fishing lake and then go to work.
He met lots of old pals and this brought him some comfort and enjoyment in what was otherwise a horrible year for him. John seemed to go downhill from October once the fishing season ended, just as he had done the year before he was diagnosed. He had ballooned to over 16 stone with a 40 inch waist due to the steroids. He had become less mobile and needed more help, but would still deny he did. What affected John more was the fact that he couldn’t work and hadn’t been able to drive for two years.
He managed to attend the Remembrance Day at church on Sunday 9th November 2014. John actually wore his army medals with pride (which was out of character). He was acting strange this day and I became very upset at his behaviour and never made it into church with him. That evening he was determined to put on a firework display for the kids in the street. I didn’t want him to go as he was very off balance. But he got pleasure out of doing this for the kids and, guided by me, he went ahead.
The weeks went by and we tried to look forward to Christmas. John had lost his father and then his mother aged 85 had a fall on 12th December, breaking her nose and shoulder. She wasn’t kept in hospital, so after treatment she came home and John was adamant that he should move in and be with her. Of course he was in no fit state to look after anyone, but to be honest, things were that bad between us that it seemed a good idea for us to spend a few days apart.
On 15th December John and I went shopping together in Middlesbrough. Looking back it was a nice thing to do but, at the time, I was conscious that things were fraught. We argued as John had wandered off as I parked the car. We went for a meal but things were very tense. He said he wanted to go to a jewellery shop. He had looked online and seen a locket he wanted for Sophie, which I knew nothing about. He said he wanted to buy us both a locket to “remember me by when I’m gone.” This took me completely by surprise; it was as if he knew his time was near. Sophie’s says “make a wish” and has a shooting star and mine is a heart in white gold. It stopped me in my tracks and made me think. Looking back there are certain things he said, or did, that make me think he knew it would be soon.
Christmas was upon us, the house was decorated and we were all ready. John was eager for me to do the Christmas shop. Sophie was excited about breaking up from school and I had finished work. John returned home from his mum’s on the Thursday 18th December, having organised a care team to go in and care for her three times a day for the next six weeks. On Friday 19th, I had volunteered to be a parent helper for the school as the children were taken by bus to the church. John insisted he would help too. We attended the schools Christmas carol service at Christ Church in Great Ayton. We then picked up some treats from Stokesley Market before having lunch at an Italian restaurant. John struggled with his meal and said he felt sickly, but we managed to visit his mum too for a cup of tea. That night he looked exhausted and was cold. He said he felt sick so he didn’t eat anything else that evening. The next morning he woke me around 7am. He was burning hot and said he felt sick. I shot out of bed and I tried to help get him into the shower room. His body had stopped working. His brain was telling him to do things but his body couldn’t do them.
When I finally got him to the shower room he stood with his head on the wall, which he had taken to doing. He fell down and I rang for an ambulance. When I came back he had a very violent seizure. I had never seen a seizure this violent before. I was frightened and screaming. I realised I had to get Sophie out of the house as I was scaring her with my screams of panic. I knew what was happening. I sent Sophie over to a neighbour’s in her pyjamas because I didn’t want her to see her dad like that. John died in my arms on the bathroom floor at 7.15am on 20th December. The last words he said to me were: “I’m alright.”
He had always been in denial about everything. We so wanted to get to Christmas and to make it to a meeting with his consultant on 8th January. I felt in my heart that we would lose him in 2015 so it was a shock that it happened so soon before we had even had a chance to think about end-of-life-plans. This was supposed to be our last Christmas together, he just didn’t make it. On Christmas Eve, Sophie and I opened the lockets he had chosen for us.
Sophie wrote a poem for her dad which she read out at his funeral service. The hardest thing I have ever had to do is tell my daughter that her daddy had died and gone to heaven. His death was very traumatic and very sudden; it will take a long time to come to terms with it, and for Sophie and I to get back some sort of new normality.
We have John’s ashes at home in a biodegradable canister, with a beautiful scene of bluebells in a wood (which is significant to when Sophie was born). Sophie has started hugging it and saying “goodnight daddy.” She has also named a teddy “John” as it has a big tummy and reminds her of her daddy. She took it with her to school the first week she returned after the funeral.
We have had great support from friends, family and neighbours, so many invitations for meals and have received cards and gifts of condolence. Brain tumours kill more children and adults under the age of 40 than any other cancer ... yet just 1% of the national spend on cancer research is allocated to this devastated disease. We have been through hell and I don’t want others to have to go through this.
These are the words our daughter wrote:
By Sophie Mae Annis, aged 8
“I fought for my country
I fought really hard
I loved my fishing
But life was so hard.
My daughter is precious
My wife so loyal
But me on my own couldn’t fight cancer at all.
I tried really hard - I tried to live
Memories and hopes will still always live.
My spirit goes on
My spirit will live
My spirit brings peace to those who still live”.
The service for John took place at the same church where we had attended the Christmas carol service the day before he died and was conducted by “Rev Pev”, the Reverend Paul Peverell, the vicar who took the service for John’s father 12 months before. Just over £1,000 has been raised for Brain Tumour Research in memory of John.
Julie Annis, February 2015