Men’s Health Week (10-16 June) aims to ensure all boys and men have access to the information, services and treatment they need to live healthier, longer and more fulfilling lives.
This year, we’re giving our male involvement volunteers the opportunity to share their brain tumour diagnosis and journey. We hope to encourage other men to reach out for help if they’re concerned about symptoms, or struggling with the mental toll of a brain tumour diagnosis.
Dan Conner – Involvement Champion
I was diagnosed with a brain tumour in February 2023, after I had a seizure while sleeping. None of it seemed to make much sense and I could only process one thing at a time.
In hindsight, over the previous few years, I had had some out-of-body experiences, but I’d thought they were due to stress. I never had any other symptoms. I wish I’d seen my GP, but I didn’t think my symptoms would warrant further investigation.
A little while after my diagnosis, I was seen by the neurosurgeon, who was confident that surgery would be successful and that the tumour looked low grade.
I went back to work before my surgery and tried to carry on like nothing had changed. The surgery went well and I was out of hospital after two nights. I was feeling strong and ready to pick back up where I’d left off. My most important questions were about when I could return to my normal activities. But at the back of my mind, I knew I was waiting for the histology results.
A couple of weeks later I had a call that changed my life forever. My wife and I went to see the surgeon and were told the tumour was a higher grade than we were expecting. I stayed strong for as long as I could, but eventually the emotions came out.
Those were a dark few days, until I realised there was nothing I could do to change the situation. I had to stay strong and tackle each obstacle as it came. I knew my life would never be the same again, but that didn’t mean I couldn’t look forward to each day ahead and take advantage of every moment, otherwise, what was the point?
The diagnosis has definitely given me another perspective on life and has allowed me to appreciate the things that matter most. I’ve dropped a few hours at work which has meant I spend more time doing the things I enjoy.
With an expectation that I won’t make it to retirement, it didn’t make sense to me to wait for things to happen: I know I need to go and take the opportunities for myself. My treatment has gone well so far, and I have got through my course of radiotherapy and chemotherapy while still working and maintaining a good level of fitness. There are days when I sometimes forget about it all and it certainly doesn’t stop me doing anything I am still allowed to do.
I reached out to The Brain Tumour Charity because I realised I had the opportunity to share my experience and help improve the lives of others. I felt a sense of duty to apply for the role of Involvement Champion. Being a part of The Charity has allowed me to feel that I am giving something back and making a difference with my time, but it also means I’ve met others who have similar stories and experiences
My advice to other men is to talk. It can feel easy to ignore symptoms and push concerns to one side until they can’t be ignored anymore. I would want other men to feel that they can seek medical assistance without judgement. I would also advise other men going through treatment to reach out if they are scared or feeling isolated. Counselling services are a great way to voice feelings to somebody neutral who will listen and allow you to get everything off your chest. I had some counselling and it was healing and cathartic. Keeping in touch with friends and family is vital and they have been an invaluable source of comfort and encouragement for me.
I hope that my story can inspire other men to talk. It could be the most important thing they do.
Neil Munn – Involvement Volunteer
In 2013, I suffered a major seizure at home and was subsequently diagnosed with a meningioma, despite having previously shown no symptoms. With just 12% of adults surviving brain cancer for more than five years in the UK, the fact that I’m still here makes me one of the incredibly lucky ones. I’m very aware that all too many have, sadly, not been so fortunate.
All brain tumours, irrespective of classification, are devastating. And even in survivors the impact of them typically reverberates for many years, not only physically but mentally and emotionally too. No individual or family who experience one directly is ever the same again.
My diagnosis process was challenging. My local hospital staff had no expertise in brain tumours and told me nothing other than I had a “brain lesion”. I did not immediately realise that meant a tumour and I started to fear the worst.
It was vital to be able to discuss the diagnosis with an expert who was able to use simple language. Medical terminology can easily be overwhelming. If you don’t understand what any medic says to you at any stage, ask them to explain it further until you are happy you do.
One of the hardest mental challenges was coming to terms with the fact that something the size of a golf ball had been growing inside my head, potentially for decades, and yet I was completely unaware of it. It takes time to adjust to your new reality.
Searching online for information myself was also dangerous and it is easy to frighten yourself further. Back in 2013, The Brain Tumour Charity was in its infancy, so there wasn’t the lifeline of information and support they now offer to those affected.
At the very moment when you feel everything is collapsing around you, The Charity’s support can help you regain some sense of control and face up to the challenges ahead following a diagnosis. I would dearly have loved to have had a copy of the ‘Step by Step Guide’ to help me through those early days and weeks.
Whilst physically my tumour fortunately had a very limited impact on me, I’m very aware that post-surgery the emotional and psychological impacts were more of a challenge. Feelings of anger, dread, fear and numbness, which often ebb and flow for no particular reason, are completely normal and inevitably add to the stress, both for yourself and your family and friends.
I found myself reassessing a lot about my way of life and sense of purpose and I still wrestle with some of these thoughts. Everyone reacts differently to this situation, so give yourself time and don’t be afraid to talk about it. I tried to think about it in terms of not being able to change the past, but rather to try and shape the future as best I could.
While no one would willingly choose a brain tumour, there has been an upside to the experience, as it has led to me becoming part of the remarkable community that helps to support people affected by this ruthless disease. I’ve been fortunate to work with The Charity as an Involvement Champion, allowing me a close-up insight into all the terrific work they undertake.
I’d encourage everyone, especially men, who face this challenge to take advantage of all the resources, and find what gives you the most sense of control over the situation. Above all, stay positive, remember you aren’t alone and keep fighting!
Nick Radcliffe – Involvement Champion
June 2016 is a point in time that my life changed forever… Despite leading an active lifestyle with no concerning signs or symptoms, I found myself in the local hospital recovering from a seizure.
Fortunately for me, I was almost immediately diagnosed with a brain tumour. Truth be told, having zero exposure to brain tumours up to this point in my life, I naively took this news as I have with any challenge I have faced, which was that there would be a fix, and that I would be back to ‘normal’ in no time.
As time has passed, I now realise just how fortunate I was in how quickly I received a diagnosis. Alarmingly, in surveys conducted by The Brain Tumour Charity, over 1 in 7 people take over six months to get diagnosed from first seeing a healthcare professional, with 1 in 10 waiting over a year.
In terms of how diagnosis has impacted my life, I’m not immune to feeling completely overwhelmed at times. Even though I have lived with this diagnosis for as long as I have, there are times where I feel lost. My coping mechanism is to be dismissive of the words that I hear and think through the long term logically to a point that I can once again be accepting of what’s going on.
The truth is, my life has been impacted immeasurably, as have the lives of those closest to me. This is unequivocal and something that I struggled to accept for a long time. Though I continue to live my life in a ‘normal’ fashion, it’s simply an impossibility for me not to constantly think about living with a brain tumour and what the future will hold, which is a very real and scary thing to consider.
I wasn’t the ‘type’ to ask for help as I don’t want to be a burden to anyone. There are many clichés that come to mind with this, all of which couldn’t be more accurate. It was during one of many fact-finding evenings that I stumbled upon The Brain Tumour Charity and all the help that they offer. Curiosity got the better of me one night, and I decided I would try and contact The Charity. I have since learned of the vast array of resources available that I wish I had used from my day 1, and that I continue to use.
I’ve since become a huge advocate of not only expressing the way you think and feel, but also asking for help. Speaking about your thoughts and feelings is a tremendous source of help in its own way and can naturally lead to you understanding yourself better and becoming more comfortable with being vulnerable and people offering support.
You gain absolutely nothing from bottling up and not talking, and only become a burden and detriment to yourself and others, without meaning to. I implore you to talk and ask for help.