What is one thing you wish you knew before you started treatment?
"In May 2014, I suffered a 15-minute nocturnal seizure at home, during which I stopped breathing, dislocated my right shoulder and bit through my tongue
It later transpired that the seizure had been caused by a tennis ball-sized tumour in the frontal lobe of my brain. I jokingly named the tumour ‘Terry’ and I underwent nine-hour life-saving debulking surgery at The Walton Centre for Neurology and Neurosurgery in Liverpool. Afterwards, the biopsy results showed that the tumour was a grade 2 astrocytoma, carrying with it a prognosis of just five years. I was deemed unfit to resume full duties within the police and forced to take early retirement, on medical grounds.
I decided to set up a website, where I blogged about my treatment, diet and fitness regime, in order to support fellow patients.
I continued being scanned regularly, to monitor the status of my tumour and in July 2015, I was given the news that the latest routine scan results revealed a regrowth of the tumour. It was now the size of a walnut and located in the central hemisphere of my brain. I had another nine-hour operation to remove the growth and spent 14 days in hospital recovering. Unfortunately, the histology report showed that it was a grade 4 glioblastoma multiforme (GBM).
“I was told my prognosis could be as stark as just three months without further treatment and six to eight months with treatment. There was no getting away from it; I was terminally ill.”
As my world came crashing down around me, I had no choice but to embark on six weeks of concurrent radiotherapy and chemotherapy at The Clatterbridge Cancer Centre in Birkenhead. During the last week, I suffered a full psychotic breakdown and was admitted to hospital. Not long afterwards, I started six cycles of double-strength chemotherapy, over six months.
Just a month before my treatment finished, in March 2016, I suffered five nocturnal seizures. This resulted in me biting clean through my tongue and dislocating both my shoulders.
In spite of this set-back, I managed to complete my final round of chemotherapy the following month and at my first post-treatment consultation, I was told the results from the MRI scan showed only a few cancerous cells were left. That came as good news but didn’t take away from the fact that I’d had a really tough year.
Alongside my conventional NHS treatment, I decided to cut out carbohydrates, sugar and most fruit and vegetables from my diet, opting instead to follow a ketogenic plan, eating more meat, dairy and fats. It is known that brain tumour cells need high glucose levels to survive. The diet decreases the availability of glucose for the cells and therefore potentially decreases their energy levels which may result in diminished growth. I don't believe there is one cure for cancer but a multitude of approaches are needed to defeat it.
People always ask me how I stay so positive but for me it's the only way to live. Although it may shock some people, in a way I am thankful for this tumour as it has given me a better outlook on life. I have more time with my family – before I thought I needed to make money so my kids could have whatever they wanted, but really, they just wanted me at home. It has taught me not to take life for granted as it can all be taken away from you in the blink of an eye. All I want to do now is use my horrific situation to help others and give them hope that you can beat a terminal diagnosis"
I wish I had known about alternative treatments such as Hyperbaric Oxygen Therapy and been advised of the damage caused by radiotherapy. Due to radiotherapy I have now been advised that I am at risk of having the early onset of alzheimer's disease and dementia.
What was the most difficult part of your journey and how did you overcome it?
There were many difficult parts in my journey and recovery is never straight forward, there are a lot of setbacks. One of the hardest parts of my journey was of course my GBM Multiforme Wild Type prognosis, yet just as difficult was my full psychological breakdown between cycle 5 & 6 of chemotherapy, where I was hospitalised for a week. I also found it hard to grieve for the person I used to be before my diagnosis.
What advice would you give on how to best support a loved one going through brain cancer?
This is a hard one to answer as all you need when you are going through this terrible journey is for loved ones to be there, being supportive when they need it. I remember when I was given my 3 month's life expectancy in 2015, my wife Sam made me go on a run which I was so reluctant - why would I go for a run when I only. had 3 month's left to live? That run saved my life and it is what I believe gave me the fight to not accept my prognosis. I also feel that it is harder for the loved ones than the ones diagnosed as they feel helpless and become the carer, cook, researcher, fundraiser, full time parent, driver and all while trying to remain positive for you.
What was your biggest self-discovery or revelation after you were diagnosed?
That life is so short and that you can't get time back. So spending time with your loved ones making memories is what life is about. Being diagnosed does make you reevaluate your life, realise just how precious life is and that tomorrow is not guaranteed. I know it seems strange but I am glad I was diagnosed with Cancer, as I was working 14 / 15 hour days and never around to see my children growing up. I am now heavily involved in their daily routines and have realised that time with the family is the most important thing.
How did you find the strength to go through the treatments?
You don't know how strong you are until strength is all you have left. I refused to die and leave my family, so I changed my mindset to not accept my prognosis and fight to stay alive.
How did you deal with the anxiety that surrounded your diagnosis?
I accepted the diagnosis, but I refused to accept my prognosis. Anxiety was never really something I suffered with as what is the point in worrying when you have no control over it. I instead used my energy to research alternative therapies, supplementation and treatments available worldwide for brain cancer.
What did you do to help you meet the challenges of your treatments?
I invested in quality supplementation to improve my body's immune system, I structured a daily routine which consisted of exercise, nutrition, hydration, sleep and alternative treatments.
"People always ask me how I stay so positive but for me it's the only way to live"
What did others close to you do for you that made a difference?
My best friend Debbi and alongside other friends helped fundraise for a campervan that was used to take my children away on holiday. They supported myself and family in so many ways, even bringing meals so that my wife Sam didn't have to cook was such a huge help. They were there when I needed someone to talk to and they gave me the space needed when it became very overwhelming. I have been very fortunate to have such a great support network around me.
Did you join a support group? If so, how did it help and are you happy to share the link?
Initially I did, but then I removed myself off all of them very quickly due to the negativity, unsuccessful stories and even some toxicity when speaking about alternative therapies. I found it easier to concentrate on my journey and to remain around as much positivity as possible.
What three things would you tell a person who just yesterday learned of their cancer diagnosis?
1. Cancer does not mean death, when they give you a prognosis they go off an average, they do not go off what supplementation, exercise, alternative therapies you are doing, so don't accept being average.
2. Remain positive and work on creating a fighting mindset. Do not accept your prognosis!
3. Look at your journey from a 360 degree approach , change your lifestyle, diet, invest in your health and keep your body moving. Exercise inhibits cancer growth up to 50%, compared to chemotherapy & radiotherapy which is 30%. Exercise does not have to be strenuous, brisk walks, climbing the stairs and keeping active is the most important thing.
Were there any particular blogs, organisations, websites, journal articles, or people who were especially helpful with support and/or information?
Yes, there was Cheryl Broyles who at the time was living in America who had the same diagnosis as me! Cheryl was 8 years past her prognosis and was a fellow GBM4 survivor. I reached out to Cheryl and she gave me the hope that I needed. Here is her story: https://endbraincancer.org/cheryl-broyles/
What did you change in your life to support any medical treatments you got- dietary changes, activity changes, supplements?
Nutrition has been a huge factor in my journey, when I was given a 3 month life expectancy in 2015, my oncologists advised me to go away, get my affairs in order and could eat whatever I wanted. I had already done extensive research into the Ketogenic diet and took part in a clinical trial at the brilliant Walton Centre, to look at the effects the Ketogenic Diet has on the body, whilst undertaking chemotherapy. I stayed on this strict keto diet for 18 months and the trial has been that successful that it has now been opened up to other GBM4 sufferers. I now follow a 80/20 nutrition protocol of healthy, organic and nutrition dense diet. I have invested in quality supplementation to support my immune system such as Liposomal Vitamin C, DHA, Vitamin D3 & K2 vitamins. I highly recommend alternative therapies and am a regular in the Hyperbaric Oxygen Chamber, Red Light Therapy, Infrared Sauna and I am a regular cold water dipper, which has huge benefits both physically and mentally. I have since set up a charity called Ahead Of The Game Foundation that offers fully funded placements on our Health & Wellbeing Cancer Rehabilitation Programme, as I believe that it is my duty to those diagnosed to let them know that there is another way, there is another option, but most of all there is hope.
What is something that you’ve found has given you hope during this time?
Cheryl Broyles gave me hope, to hear a story of a thriver who had outlived her medical prognosis. I stayed away from Google which was all death and doom. Cheryl gave me a glimmer of light that you can define death and beat the odds.
With the benefits of hindsight. if you or a loved one had to do it all again, what would you do differently when going through your diagnoses and treatments?
Nothing, I don't regret anything I have done. I feel that I gave it my absolute everything and completely transformed my life, using my diagnosis as a warning that something had to change. I may have Cancer, but Cancer does not have me.