Welcome back to my blog, today I’ve enlisted the help of someone who has been there with me, on pretty much identical treatments, from day one. This is Liam’s story.
Firstly I’ve never written a blog, so this should be interesting. I have a Glioblastoma 4 brain tumour, best described by my good friend Adam a consultant anaesthetist as a real shit one, these medicals terms can be difficult to get your head round can’t they.
So with the fear of losing your attention straight away, I’ll give you the bare bones of what happened and then some thoughts…
April 10th last year I was still living in Manchester, I had been out for a bike ride about 90km and was cooking the family tea. I have no memory, but the children and my Wife found me on the kitchen floor in a pool of blood, (the blood isn’t significant I just hit my head on the way down but it certainly adds to the drama.) What was significant was that if I hadn’t listened to my wife and gone to hospital. My tumour would still be growing in my head, don’t ignore something out of the ordinary or excuse it as a trip or mis-step, even during a pandemic.
So after a few days in hospital I was booked for scan. Usually this would be 4 weeks but because of COVID it was 12. They were worried after the first scan that something was amiss so booked me in a week later. Sadly in the meantime my mother who was ill with leukaemia, got very much worse and we were told that it was no longer possible to treat her and that she may only have a few more days or weeks. My mum was insistent that she wanted to be with her family so with medical support in place at home, we managed to sneak her out of hospital. I went for my 2nd scan and then managed to return and say goodbye to my Mum. The following day I got my diagnosis of a grade 4 Glioblastoma and a prognosis of 2-4 years life expectancy. This was followed a week later by some brilliant 8hr brain surgery at Salford, my surgeon, Ms Karabatsou managed to remove 95% of the tumour. This was swiftly followed by 30 Days of radiotherapy at the excellent Christie in conjunction with chemotherapy and was probably the time I suffered most with the usual side effects of nausea, sickness and exhaustion. I’m now on cycle 5 of 12 of chemotherapy sessions in tablet form. It knackers me out, but I’m lucky I seem to react better than some in-between monthly cycles.
So that’s the medical bit covered, I thought I’d mention some things that have helped me:
- Try and be honest. I’ve always been completely honest with family and friends. Telling my Dad the day after his wife and best friend of 52 years had died. That I was in all probability, going to beat him to it was difficult, it was clear to see it was serious as I was going to miss my Mum’s funeral, he needed to know the truth each step of the way. The same goes for my brother and sister. We talk often and I include them as things unfold.
- Include your children. I believe in the same honesty for my three children Joe 18, Caitlin, 16 and Esme 14, these years are not an age to try and hide things, never underestimate the intelligence off teenagers. This was tough as they had just lost their Grandma who was instrumental in their bringing up. But also more tragically, their Stepbrother Lewi my Stepson had died the previous year of yet another brain disease we struggle medically to understand called psychosis, Lewi had died by suicide in 2019. We were a unit of 6 Jen my wife and the 4 children, and I had to tell them they were going to be 4 sooner than I would like. But for me honesty is everything, my family, my friends are a google away from knowing what a glioblastoma is and its outcome. You may ask them not to, but come on it’s just too tempting
- Don’t be afraid to love. My wife Jen who has the sadness that hangs over and smoothers with a grief known to every parent that’s lost a child, it is unnatural. As parents we pass on the baton to the young. But despite all this she has always been there for me, I can’t drive anymore, Jen has to take me in and out of Manchester, past places that remind her of Lewi, some great memories some painful. She picks me up when I’m low, she gives me space when she senses I need it. She is the perfect Step Mum and support to the children, she motivates me, she remains positive for me, even when it is a tough time for her. Don’t push your love away, because you are worried it might hurt later for them when you are gone. Embrace it, not medically proven but I believe it helps
- Reach out to friends. I have unbelievable friends, a real core who know who they are, but all of them have been there for me, my friends in Manchester centred around Reasons to be Cheerful, created a support group for me, offering dog walks and shopping and drinks by zoom, and friends in Knutsford too have also offered practical support and time to talk. Don’t be embarrassed to take their help. It doesn’t just help you, people who are close to you are also in shock, especially at my age of 49, it reminds them of their own mortality. I’ve found that asking for support is a great way of helping others too so don’t be embarrassed.
- Embrace meeting new people, virtually at the moment, that’s how I came across Mathew, they are going through the same experiences as you and it isn’t just your cancer, it’s all experiences, not just people with cancer but their family as well. You learn from each other, they inspire you, but be prepared they also remind you of the seriousness of your situation and that can be heart breaking
- Take all help offered. My work at the University of Manchester have been magnificent and I have a great counsellor. I have a long history of clinical depression, yet weirdly I have never felt more in charge of my life. I can’t control what my brain tumour decides to do. My counsellor has helped, I would recommend seeking counselling. It can be a safe space to share your hopes and fears and help you to process things by talking out loud about your thoughts and feelings.
- Keep setting goals, if you don’t you can too easily drift through the days. I try to cycle 3 times a week about 50k each time, I walk Olive the dog every day for 5k, but, at the same time, there are times when I can’t exercise or be active, especially during chemo cycles, don’t beat yourself up, your body talks to you, listen to it.
- Raising awareness. This can feel purposeful and give meaning. I want to raise some funds for Brain Tumour Research, so far I have done a Zoom wine tasting and 10,000 steps a day and we are nearly at 5K. Future projects include a coast to coast cycle and then walk back. Also a cricket day in September at my club, I may not be able due to my health, but by planning I keep motivated and focussed.
People ask me how I stay so positive, well the truth is, I don’t all the time. But, when I am exercising if I don’t push the pedals, I fall over, when I am not walking, the dog barks. I have always loved nature and being out and about, but I see things even more sharply now, the changing of the seasons and the sound of the birds and it feels good to be amongst them.
As documented above, I have great family and brilliant friends, I love music, wine, craft beer and keep moving by bike or by foot a large proportion of the time and it is all this that keeps me going.
The rest of the time? I live in the nether land of wondering. What will my death be like? How will I feel? What happens next? I have no faith but I know that physicist’s tell me that the energy in the world is constant. I certainly feel the power of my Mum and Lewi with me all the time, what I grieve for is the future. My children’s lives, their achievement’s and their children’s achievement’s.
I never had Grandad’s, they both died when my parents were about my children’s age now, so I hadn’t realised how much they can add to a child’s experience, to know I won’t to be able to be there saddens me greatly.
9 But I am nearly 50, as a 16 year old I held my then best friend in my arms as he died after a hit and run. I have had 34 additional years more than Patrick. I’m the Step Dad to a musical artistic gentle lad, who died by another awful brain illness I have had a full life, I have seen bands that are iconic, been to places most people can only dream off, drank sherry and wine in the bodegas and caves of some of the great wine makers. I have skied with my beautiful wife, driven over the Golden Gate Bridge in a convertible mustang, taken the Family to places at their age I couldn’t have dreamed of. So I’m a lucky man, but in all probability I won’t get to see my children do these things, I know compared to many of the younger cancer patients, I have had a blast…. I would just have liked a little more.
Thank you so much to Liam for sharing his story and thank you to you for reading this blog post. You can find Liam on Twitter @liamdbergin. Please show your support by sharing this blog post.