“I knew that before I died, two things would happen to me. That number one: I would regret my entire life; and number two: I would want to live my life over again.”
That bloody quote has been hanging over me like a dark cloud ever since I purchased the 10th-anniversary edition of The Holy Bible in Woolworths, Aberdare, like an inevitable self-fulfilling prophecy. Now it’s finally manifested for me and I’m utterly distraught at how it’s all been leading to this.
Today I received the news I’d been told to expect: terminal stage 4 brain cancer (glioblastoma). I’ve had the tumour removed, and with radiotherapy and treatment, the average life expectancy is around 12-18 months. There are anomalies, but I’ve been pretty average in everything my entire life. I suppose now is as good a time as any for me to step it up.
Turns out the old tumour has probably been sitting there dormant for years, pressing down on the part of my brain where all my personality, emotion and memory is stored. It has been silently orchestrating and consuming me in the background, warping and changing my outlook on life, making me question everything good I had.
Most of my adult life I’ve suffered with depression and a crippling anxiety that until now I’d put down to my downtrodden Welshness and my love of the Manics. Now I know it’s also because I’ve had a little neighbour upstairs, pushing my melancholy buttons. My misery wasn’t solely formed of my teenage obsession with Richey Edwards.
I’ve spent years poring over my own perceived futility of life, finding no value and worth in anything, and I have been wishing for death at times just for the emptiness to end. I’ve thought about making it happen on more than a few occasions but always lacked conviction because the love I have for my parents and what it would do to them overrides everything.
I’m not going to sit here and attempt to absolve myself of blame for all poor decisions I’ve made in life, but if I am going to attempt to pass the buck and get angry at something, then it might as well be at cancer, right? Exactly.
So here goes.
The tumour made me question my self-worth, withdraw for years from my friends and family and shut myself away from the world, making me feel like I didn’t belong anywhere. It drained so much energy just to try and force myself to feel some joy in living life. I always wondered why others looked so happy and contented doing nothing particularly special, just taking joy in the everyday. I just couldn’t grasp what it was that they had that I had not, because by the world’s standard, my life was pretty good. I had a decent job, a great bunch of friends, a loving family and I was married to a wonderful person. My mental state contributed to the destruction of my marriage to one of the most amazing people in the world, Aimee, who I have missed every single day for more than two years now.
Aimee, we’ve never publicly acknowledged our separation, but I’m so grateful that I met you at Swansea University and got to share the next 15 years of my life with you. I have so many memories of our time together that I will cherish forever. You tried so hard with me for so long and I’m sorry for what happened and that we grew apart. I wish you nothing but the best and all the happiness in the world. You’re a beautiful person and it was a pleasure to be in your life for so long. Thank you for putting up with my moods and my decisions; or more often, the lack of being able to make any. I hope you can forgive me.
This past year or two, I was starting to try and get my mind and my life back on track: I’d completed a year of psychological help, started taking antidepressants and medication to help my anxiety, made a conscious effort to see and do more with my friends – making new ones along the way, including my lovely friend Melissa, who went through the most traumatic of experiences imaginable and who taught me so much about patience, strength and resilience, which is coming in very handy right now(!!) – and just generally doing things that I knew were good for my mind, like going to the gym, walking around the park at lunchtime, playing football again, relearning the guitar and reading books that I’d started but never finished because I never wanted to find out the ending. I’d just been offered a new job that I was due to start this month with Barnardo’s (thank you to my new boss Shelby for your patience and understanding), I got my first job as a freelance copywriter with the Black Country Living Museum and I was looking forward to buying my first home later this year in Cardiff. Most importantly, this summer I’d started spending time with my favourite little human, my luminary, Claire.
Claire (pictured with me, above. I am smiling, I promise. Unbeknown to me, there’s a big tumour in my brain, so it could also be a slight grimace) is everything I love about all of my friends all rolled up into a little package, and I’ve never been so captivated by anyone before. It was Claire’s nagging for me to get back to hospital after my stroke that led to the tumour being found. Without her, I’d more than likely be already dead because of the amount of swelling and pressure they found in my head. So I actually owe her my life, what’s left of it. Claire, for once your godawful Hawk-vision was spot on! I love you, you know me inside out. You know when to sit me down and sort me out. Thank you for being by my side when I’ve been all strokey and a tumour-ridden, emotional mess. I know this has been an awful journey and in an ideal world neither of us would have chosen how this all unfolded, but you’re here now. When it mattered most. You’ve been so kind to me and I’ve not always deserved your kindness, but I am forever grateful. I’m sorry that we now probably won’t get to have the life we’d hoped for; a simple little one, by the seaside. But I really do hope you can in the future still. You deserve it. In the meantime, I hope we can make the most of whatever is left.
Anyway, back to my upstairs intruder. It must have been thoroughly pissed off with all this positivity entering my life, so it retaliated by turning into aggressive brain cancer: firstly through inducing a wave of tonic-clonic seizures and then by paralysing the left side of my body via a very large hemorrhagic stroke. Due to the pressure, my brain shifted 10mm (which in brain terms is a lot) to the left in my skull, so the whole world went a bit sideways.
As I said, according to the statistics, most people live on average for 12-18 months, but I don’t know exactly how long I’ll have left, or what state of health I’ll be in as the cancer eats away at my body. Eventually, it will invade the part of my brain that controls my vital organs and then it will shut them off. I may lose my vision or any of my senses at any moment. So, in case I never get a chance, I want to thank my friends so it can remain here for eternity for when I’m gone (or until some madman pushes the button, or the planet combusts or the internet goes down. Note to self: probably write this elsewhere as well. Maybe send your friends these messages in cards).
Sean. Thank you for being my best mate since we were in school. I’m sorry my mental state made me hide away a lot during our 20s. I wanted to join in with everything but I just couldn’t face a lot of social situations, and I couldn’t tell anyone at the time what was going on in my head because I didn’t really understand it myself, other than I knew I didn’t have much self-confidence. You were the first person I called after Aimee and I separated and I am so grateful for you checking in with me constantly afterwards to see how I was doing. You’re the person I’ve always turned to for advice and you’ve always been there to help. You were my idol growing up even though you were also my friend. You influenced my choices in music and fashion and I’ve always wanted to be more like you. You are always looking out for me and are fiercely protective of my best interests and I am so grateful to you for that. You and your beautiful wife Catrin have always made me so welcome whenever I’ve visited. Catrin, you are so kind. Thank you for putting a towel on the bed because you knew I was too awkward to ask when I needed a shower. I always notice the little things you do to try and put me at ease and I appreciate them very much.
Luke. You’ve made me laugh my head off more than anyone I’ve ever met. Your hair and your tash have been a source of pure joy to me ever since we met in Gower cider festival. I don’t know how we’re both in one piece after some of our escapades but I’ve loved every single one of our adventures. Every time we’ve gone to watch Wales, every new song we’ve made up for the players, the highlight of that experience was always sharing a pint and a laugh with you before the match. Our camping trips and singsongs about our mutual hatred of Gary Barlow make me laugh so much it hurts whenever I think back on them. You light up the lives of everyone you meet, you’re so generous with your time and I can’t thank you enough for making my life so, so much brighter. Nobody has ever made me smile as widely as you and you’ve made me feel like life is worth it for those moments during times when I’ve really struggled. You’re one of my favourite people on the planet and I am thankful everyday that you’re my mate, clart.
James. The most intelligent person I’ve ever known. Your little quirks and obsessions with inane shit that mattered to nobody but you have been a constant source of amusement throughout my life, even though it drove us all insane. Your speech at my wedding was full of your dry humour, but you floored everyone with your sensitivity and kindness, and people saw a side of you others rarely got to see, but I, and our little group of friends, always knew. Better times are heading your way and I’m so excited at what the future has in store for you. Thank you for being such a lovely friend.
Chubbs. We had a blast in the band back in the day. You’ve been a constant source of support for me since I moved back to Aberdare; encouraging me out and getting me involved with playing 5-a-side has helped my mental health enormously during a really difficult period of my life. I appreciate you very much and you’re a great friend who I have such a laugh with. Thank you for being there for me, you’ve no idea how much you’ve helped me this past year.
There are lots more people in my life I’m grateful for — everyone I go to watch Wales with: Owain, Jac, Anderson. My good friend Yiannis and all the Swansea 23rd boys who welcomed me into their group like one of their own. My little Swansea-formed contingent of Spanish and European friends who have been so generous, welcoming and have enriched my life enormously: Juan the spark, Maestro, Super Manu, Neira and Monica, Erik and Cristina, Gonzalo and Mercedes, Maialen and Jacek, Delia, Mouki and lots more who I have got to share many beautiful experiences with. I hope I can see you all again soon. My school friends, Laura, Jenna and Ted. I really am overwhelmed by the love I’ve received from my mates, and I’ve found it’s often the ones I don’t speak to so often that have hit me hardest. However wide or narrow, I’m glad our paths in life crossed. Thank you for sharing your time with me.
I’m going to be signing off for a little while to focus on treatment and spend time with my family and friends. If I don’t get chance to catch up with you, thank you all again for your kindness and love. I really am so fortunate to have met so many amazing people during my lifetime.
Before I go…a health warning:
If you’re around my age and start having seizures out of nowhere, a thunderclap headache or go temporarily blind, don’t let doctors dismiss you, insist on having an MRI scan and push for a second opinion from a neurologist. When I went to the hospital after my stroke, I pleaded with the people whose care I was under in Prince Charles Hospital that I felt I was deteriorating and I was told to sit down and shut up. There are some wonderful people working in the NHS and I appreciate the challenges and pressures – and the systematic destruction – on it as an institution are enormous, but I cannot overstate how poor the standard of care I received was – overall – notwithstanding some of the brilliant nursing and support staff who deserve so much better. And the surgeon, Kat Whitehouse, and her team in Cardiff who removed the tumour, have also been amazing with me.
Over the course of two months, the hospital missed several opportunities to find the tumour before it caused the stroke and then turned into what it has. They kept reassuring me that I was fine and telling me I “just may never know” why I had unexplained seizures followed by a huge stroke, and I was discharged a month later with a 4x4x4cm tumour in my head and given community stroke rehabilitation. Their complacency, indifference to me as a person, lack of care and negligence has essentially robbed me of my future. The people whom I entrusted my life with.
Edit. I’m adding in this edit because I think it’s important to stress, and I want to make it clear that most of the nursing staff, healthcare assistants, physios, OTs, cleaners, were absolutely lovely and are genuinely a credit to humanity and our beloved NHS. They are let down by the overall care I received and that I was discharged with a life-ending cancer by consultants ‘above’ them.
So yeah, I’m angry as hell, but I’m angry at much more than the individuals who let me down. I’m angry that as a society we’ve let our once heralded health service spiral out of control, immune from criticism, and, through the backdoor, be torn asunder by greed and for profit. And it’s going to get worse, and I’ll just be another unfortunate goner that mistakes will be learnt from.
Please, please fight for your health, no matter how awkward or inconvenient you’re made to feel. That’s what I’m now going to be focusing on, fighting this disease. And I will not be going gentle into that good night.
If I do lose the battle, and if there is an afterlife, be assured the first thing I’ll be doing is having a cuppa and a catch-up with my grandparents (here’s hoping my Gran took her deep fat fryer with her so I can have some of her homemade chips that she used to do when I was little. She left the vinegar bottle behind, it’s in the house. I must remember that).
So think on that and smile. And I’ll be waiting for you, but don’t dare rush. Make the most of every day you’re given. I’ll be watching over you to make sure, but not in a creepy way, I promise. I’ll close my eyes during any nude or intimate moments with a lover. I’ll probably just leave your house for a bit to be honest, even if it’s raining. Also, please don’t be too sad for me; just classic 4-4-2 tears will suffice. I can finally say I am happy now. I have had a wonderful life. I have been fortunate to see much of the world and I have been loved unconditionally by the most amazing parents anyone could wish for, for 35 years. Most people aren’t that lucky. I am.
I wish you and your loved ones all the best. Please keep an eye on mine for me if I’m gone: my Mam (Janet), my Dad (Paul), my lovely sister Rachel, her two beautiful children Amelie and Flynn, and Flynn’s Dad, Lloyd. Claire. My friends too. I love them all very much.
Stay beautiful ❤️
Matt x
PS: if you would like to help, I have set up a GoFundMe page to try and raise money to pay for a vaccine that is the most promising treatment for Glioblastoma in 30 years, and can potentially add years to my life, as opposed to months with the conventional cancer treatments for this form of brain cancer. The vaccine (DcVax-L) is not available on the NHS and privately costs £250,000.
Matthew Collins 
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