In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Paul was a fitness instructor and personal trainer who focused on rehabilitating cancer and cardiac patients. He was also a gorgeous husband to Julie. In April 2017 he was diagnosed with glioblastoma multiforme grade 4 (GBM). Less than a year later, Paul passed away. Julie will never get over his loss. He was only 54 years old and had so much to do and look forward to.
“There is growing evidence that brain tumours are on the increase and the type of tumour Paul had is progressively hitting a younger age group. Life expectancy and quality of life are particularly viciously compromised by GBMs.”
Here is Paul’s story as told by his wife Julie…
A brain tumour is like an avalanche – it starts insidiously but gathers pace, destroying everything in its path.
Paul and I went to the same junior school – Henleaze in Bristol, but as he was younger than me we didn’t get to know each other at the time. It wasn’t until 2007, having decided I needed a personal trainer to help get fit for my youngest daughter’s wedding, when we met in the gym where Paul worked. Paul had recently changed career to become a personal trainer, after leaving Lloyds Bank where he had worked for 25 years.
Paul had always been a huge sportsman with exercise an important part of his life. In his teens he was the 400 metres champion for his year and he represented his school at this distance and in cross-country. He also played in a football team and in his 20s and 30s was always active, enjoying running including half-marathons (he set his PB of 1:18 in the Bath half-marathon) and swimming. He loved Tottenham Hotspur and knew everything about the Duke of Wellington and Waterloo! He was a keen cyclist and we both also liked walking and hiking.
We soon found we had a lot in common, including travelling and the great outdoors, and our friendship developed into romance. We got engaged, but delayed getting married as my first husband and father of my two grown-up daughters, from whom I was separated, had recently passed away. We finally tied the knot in 2010 and settled down to enjoy the rest of our lives together.
Paul quickly became very much part of the family and loved his step-daughters Sarah and Amy, sons-in-law Luke and Wayne and was also delighted when our grandchildren arrived – Olive in 2010 and Freddie and Zach in 2014. Our fourth grandchild was born this year but, sadly, although Paul knew little Ada was expected, he died before she was born.
Since we got together, Paul became more and more involved with GP exercise referral work, taking additional qualifications in cardiac, lung and falls prevention rehabilitation. However his passion was fuelled further when he qualified in cancer rehab. He set up the Energise Bristol rehabilitation programme in four gyms across the city, which has won numerous awards and has now been extended to other parts of the south-west – truly groundbreaking.
Some years earlier, Paul had donated his own bone marrow to the blood cancer charity Anthony Nolan and was an active supporter of cancer charities– so it was a cruel irony that Paul was to be diagnosed with cancer himself.
The first sign that there was anything wrong was back in early March 2017. Paul went downstairs to make himself a cup of coffee and the vision in his left eye starting flashing with lots of colours. He said it was like a tropical storm in his eye.
He wouldn’t have been unduly concerned if this had just gone on for 30 seconds or so, but it actually went on for four or five minutes. It was a Sunday morning and Paul phoned our local branch of Specsavers where he was seen later that day. He had tests including one for peripheral vision, which on this occasion was fine, so it was thought he had experienced an aural migraine.
The following day Paul vomited and again had flashing lights, so he went to see the GP, who agreed with the previous diagnosis. When these symptoms continued to plague him throughout the week he went back to the doctor, who then decided he should be referred to neurology.
Paul eventually received an appointment to see a neurology specialist, but it was not until June and events overtook this appointment.
The “aural migraines” continued until 12th April when he phoned Specsavers again. Paul was given an appointment later that day with the optician, Vivek Lakhanpaul, who was really concerned that something was affecting Paul’s visual cortex. He spent three-and-a-half hours conducting tests, but unlike at the previous appointment, this time Paul was unable to see or respond to the lights in the peripheral vision test.
Vivek wrote a comprehensive report and advised Paul that he should get someone to drive him to the Ophthalmic Hospital. Paul phoned me and, as the Ophthalmic Hospital was closed, we went to A&E at Bristol Royal Infirmary. Paul had a CT scan and we were told there was a problem that needed further investigation so he was kept in overnight in A&E while he waited for an MRI scan the next day.
We were then told that Paul had a brain metastasis, which was, of course, extremely alarming. The doctors didn’t know where the primary cancer was and as it was the day before Good Friday we had to go home and wait for further contact after the Easter break. This was a horrible situation to find ourselves in and it was a wretched Easter.
The following Wednesday Paul saw an oncologist. His scans had already been reviewed by the neuro-oncology team and he was referred to a neurosurgical consultant. We had to wait another agonising 10 days for an appointment to be told that he had a glioblastoma. We were told that the tumour could not be cured, which was so distressing to hear. However, Paul and I completely agreed that he should have any treatment possible to give him the best chance.
I am a registered nurse and have come across patients with GBM and Paul was lecturing about cancer survival rates two weeks before his diagnosis, so having this knowledge made it even worse. I knew that our lives would never be the same again.
Neither of us was under any illusion and understood his prognosis completely. It was the worst day of our lives, the shock was horrendous.
Paul and I had only been married then for seven years (he hadn’t been married before) so we both believed we had found our fairy-tale ending and had so much planned for our future.
We were both determined to do as much as possible to make the situation as good as it could be under the circumstances.
There was a four-week wait after the initial diagnosis and then, on 15th May, Paul underwent surgery to debulk the largest of four brain tumours. He made an excellent recovery from surgery putting all his knowledge into practice and being as active as possible as soon as he could. We enjoyed walks with our dog Millie and were able to get away for some short breaks. Then he had four or five weeks to recuperate before starting six weeks of chemotherapy and radiotherapy.
Not being good with confined spaces, Paul found meditation very helpful when having the fibreglass mask for radiotherapy sessions fitted to his face and during MRI scans. He also found alternative therapies such as Reiki very helpful.
Paul managed his therapy quite well, helped by the fact that he was really fit going into it. He was on a low dose of chemo and the only things which stood out about this time were that the chemo made vegetables taste funny and he had to switch to using plastic cutlery because of the horrible metallic taste he experienced with normal knives and forks. Also, there were daily visits to oncology.
We managed to get a referral to see Dr Matt Williams at Charing Cross Hospital, but unfortunately, he was not able to offer any additional treatment for Paul.
The plan was that he would have a short break from the weekly chemo before starting on a high dose delivered monthly. However, after the first month, Paul became very unwell while we were at a patient support group. He was nauseous and vomiting.
I called oncology and Paul was taken into hospital for a few days. Devastatingly, the MRI scan revealed progression of the tumours. We discussed what he should do and agreed that there was no real alternative but to stop active treatment. The consultant told me he didn’t expect Paul to live past Christmas. It was devastating.
Paul came off all active treatment but made it known to the medics that he was keen to participate in research trials. He continued his routine of meditation and relaxation, as well as exercise when he felt up to it.
From the start, Paul had modified his diet, drinking green tea and started taking high-strength CBD oil. We both did our best to make the most of every day while trying to stay positive. Sometimes this was very hard indeed as I slowly watched the man I loved become more disabled by his disease. Paul, however, never once complained about the hand he had been dealt and always tried to support me, his friends and family.
Because of the significant restrictions to his vision, Paul found that the new speech-enabled iPads were absolutely amazing and was very thankful for the development of audiobooks.
Towards Christmas, Paul’s personality changed – he had always been such a kind, considerate and mild-mannered man, but he began to act completely out of character. It felt like I lost Paul before he was really gone. His condition and mobility gradually deteriorated and he was virtually bed-bound – a bitter pill for someone used to being so active. He developed a psychosis due to the high-dose steroids which he had been taking since his diagnosis which was very distressing and difficult to deal with.
Three weeks before he died, Paul was offered a bed at St Peters Hospice in Bristol. I had always thought he would stay at home until the very end, but I am so glad he agreed to go to the hospice because it allowed me to go back to being Paul’s wife, rather than his carer, and for us to share some precious time together. The care he received in the hospice was amazing – they looked after us all.
The last two weeks of Paul’s life were as good as they could be. He received the Lord Mayor of Bristol’s Award while he was in the hospice for his charity work which was a very proud moment.
Paul passed away on 12th March 2018, exactly 11 months after his diagnosis. He had his family by his side until the end and, I believe, was in no pain. I am fortunate to have had such wonderful years with him.
Paul’s funeral was a humanist celebration of his life and Paul would have been so proud of our granddaughter, Olive, then just seven years old, who stood up during his funeral and spoke about her grandad, sharing the memory board she had made with everyone.
I miss Paul every day and I truly think it gets harder as time passes. Raising funds for the Brain Tumour Research charity was extremely important to Paul and is yet another example of the wonderful man he was. I will continue in the aim we set together when he was first ill to raise enough money to fund the equivalent of 15 days of research – if it helps one other person the effort will be worthwhile and I thank everyone at Brain Tumour Research for their support and also our amazing family and friends who help with the fundraising.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Paul’s story, you may like to donate to Julie’s fundraising page: www.justgiving.com/fundraising/julie-emsley1
Together we will find a cure.
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.