Christmas, Cancer, Anxiety, and Depression.
I want to share a story that is deeply personal to me about how my mum lost her battle with Cancer and my battle with Anxiety and Depression. I’ve never spoken about it in public before and I’m pretty good at hiding it, but I recently came across @AidenHatfield and we both use music to manage it. He inspired me to share my story.
Writing this down is to help me manage more than anything (another good trick) but maybe someone identifies with what I’ve been through and finds some solace in it. Maybe you know someone who is struggling, and this helps you understand what they’re going through. I hope so. I know a lot of people struggle at this time of year. I do. So…
Anxiety got the better of me this week. Most of the time I keep that demon at bay, but although I love Christmas, I know the pangs will start getting to me eventually.
Obligatory disclaimer, … I apologise in advance if this gets long-winded. I just wanted to get some of this out of my head. Also, I am not a good example of how to deal with these things. I’ve made some terrible mistakes which I wouldn’t want others to have to suffer through. But I’m still here and for the most part, I live a life without too much struggle. It creeps up on me from time to time, but I found a way I could cope without the constant feeling that something terrible is right up on top of me.
I should probably also say that I know lots of people who have it much worse than I do. But you know, relativity and junk…. I’ll probably ramble a bit too because I’m figuring this out as I type.
Okay, here’s the back story. It might take a while for me to recount it all, but I think it’s important and looking back, I know this is where it all came from. I hope you stick with me.
Here’s a picture of my mum.
I love it because she’s happy and enjoying a well-deserved holiday. Being in the sun was her thing. She was in every way I can think of, the centre of my whole identity and the cornerstone of my family.
I came from a standard working-class background. Both of my parents worked *really* hard to raise me and my sister. My dad especially. He’s the kind of guy who would do absolutely anything in his power to make sure his family was okay. When I was a little kid, he worked in the factory during the week and sang in working men’s clubs at weekends to make as much money as he could for us. We didn’t have much and sometimes we just didn’t have enough.
I still remember turning the lights off and hiding behind the sofa from debt collectors when things got bad. I still remember him crying about that kind of stuff and trying to hide it from me. In a lot of ways that has shaped the person I am today. I feel super protective about my own wife and kids, and I take their wellbeing really seriously. Maybe too seriously. I don’t want to fail them. I guess that makes me a traditionalist in some ways. Some people today might call that ‘toxic’ even. Maybe it is. IDK. Whatevs.
The point is, my dad was the guy who made things right when it counted. It’s not that my mum didn’t work hard. She really did. But my dad worked every hour he could to make sure she didn’t have to worry as much. To make sure I didn’t know that they were struggling. I know that was insanely hard for him. I’ve never told him how much I appreciate that. I don’t know why.
Fast-forward a few years and I’m in my early twenties. I was a father myself at this point! I had my first son at 18. If it wasn’t for my mum’s support when I was a young father, I would’ve been totally lost. She pretty much went grey overnight when I told her my girlfriend was pregnant, but she really turned things around for me and got me into a place where I could raise a family and take responsibility. I think that’s important.
I was about 25 or so when my mum found out she had breast cancer and our family was truly shaken to its core. For the first time in my life, I noticed that my dad was really struggling. He shouted at me one day like I was a child, for something completely inconsequential and it really hurt me. I cried a lot!
But after a little while, I understood it was just him taking his frustration out on me, just because I was there, and he was emotionally bankrupt. My mum was about to go in for a mastectomy and there was no amount of working hard or for long hours that would fix any of the risks involved in that. For the first time, he couldn’t protect her by putting in the effort.
I went to see her in the hospital once. ONCE! I will never forgive myself for that. I don’t think I was prepared for the possibility that she might not survive it, so I get where my behaviour came from but still… I know it hurt her. I know she didn’t understand why I didn’t want to see her there. I never got to apologise for that.
After the operation came months of Chemotherapy and Radiotherapy treatments. I remember sitting with her and my son when she showed him her bald head for the first time and how nervous they both were. And yet it’s one of my favourite memories of her. She was so brave. They both were.
Somehow, we got really lucky. This was back in the day when any kind of Cancer was a really big deal. I know it still is but there were far fewer people then that were able to call themselves survivors. There were a lot of ups and downs and it took away some part of her that she never got back. But she got through it. We were all so proud of her.
Years passed and in that time she went through what seemed like endless testing. Eventually, she got the ‘all clear’ and we were overjoyed with the news. Years passed again and then she got this cough and a weird feeling in her mouth and tongue. She kinda knew something was wrong before any of the doctors did. She went for a whole bunch more tests.
Then the day came.
My dad and sister told me she had lung cancer. They told me that there was nothing anyone could do. For reasons I can’t get into, we knew before she did. We had to tell her. So, one day when she was out somewhere, we all met at my parents’ house and waited for her to come home. When she got back home and saw us there, she knew straight away that we had bad news. My sister was the one who said the words. After my mum stopped crying, she turned to my dad and said, “I knew I wouldn’t make 60”. She didn’t.
For a few weeks, all hope was lost. Nobody was prepared to operate on her. And then one day, out of the blue, a surgeon came forward and said he’d do the procedure. He was really clear that he couldn’t make any promises, but he thought it was worth trying. He was going to remove about a third of her lung. It seems stupid now, but I bought doughnuts for my team at work to celebrate. I’ve got no idea why I did that. I clung to the idea that she was going to be saved.
After a few weeks of pre-op stuff, the operation date came. I remember kissing her on the head and telling her she’d be okay as she went into theatre. Honestly, I really thought she was going to be. That was outright denial and I recognise that now. The operation was going to take 9 hours. It was the longest 9 hours of my life.
Then she came back out of the operating theatre. The surgeon came to us with great news. Everything had gone really well, and he expected a full recovery! We could go down to critical care and see her. We were all so happy, but I wasn’t prepared for what I saw.
There were tubes and wires everywhere. She had maybe 10 different machines surrounding her all making different sounds and there were screens monitoring stuff I’d never heard of. We stayed with her for a few hours but in the end, we had to go back home and try to get some rest. I didn’t sleep at all that night.
That’s the first time I remember hating being in total silence. It felt like it was crushing me. I knew it had to be even worse for my dad. He went home alone. I should’ve gone with him.
The next day I drove up to the hospital and my dad met me at the door. I was delirious and terrified, but he had good news. She was doing much better than anyone expected, and she’d been moved into a recovery ward. Even better, she was awake, and I could finally speak to her again. I remember her laughing at herself because she was so drugged up that she wasn’t making any sense. It was a surreal but comforting day. I had my mum back. We had a couple of days like that until she got another cough.
It turned out that she had developed an infection where the part of her lung had been removed so she was put on a course of antibiotics. They didn’t work and one day I got a call from my dad at work. She was back in critical care and back on the machines but this time it was worse. It wasn’t an ordinary infection. They didn’t even know what kind of infection it was. After a while, they sedated and intubated her in an attempt to slow it down.
We had a couple of weeks by her bedside with her unconscious for the whole time until she started to show some signs of improvement and they woke her up again. By this time, we had all become very attuned to what the various graphs on the monitors meant. It really did look like she was going to be okay again. That only lasted for a couple of days before things took another turn for the worse. Nobody knew why so, more scans, more tests.
Every night we all came straight from work to the hospital. We were beyond tired. Emotions pretty much run rampant on you when you haven’t slept properly for that long. But we kept on turning up because, what other choice is there. I got used to the smell of the critical care ward. Fuck, I could even tell when someone had a soup from the vending machine earlier in the day. I think I would recognise that smell today.
After the tests, they decided that the infection had become too much, and they would need to open her up again to see what was going on. When she came out, the surgeon told us something that absolutely haunted me. He said that what lung she had left, was the consistency of porridge. At that point, the specialists drastically increased the antibiotic dose. I think I knew right then that I was going to lose her.
After another day or two of recovery, the worst part of all came. They were going to have to intubate her again, but she decided that she’d had enough and that she didn’t want any more treatment.
She wanted to be left to die in peace.
The doctors and surgeons had to ask us to allow them to continue treatment. We had to decide whether we were going to go against her wishes and give it one last shot. It is an impossible decision. But we had to make it.
When we decided that we couldn’t give up on her she literally begged us to let her die on her own terms. But that isn’t what we did. We just couldn’t let her go yet. She was only 59! She had to be restrained until she was sedated again. The last words she ever said to me were “David, please!”.
Everyone caring for her agreed that we had made the right choice and I don’t know how we could’ve made a different one. The words the surgeons used were that if we had given up, it would have been ‘active killing’. But it broke me. After another couple of weeks, we were told there was no hope left.
For some reason that I don’t really understand, the doctors weren’t allowed to make the decision to turn off life support. We had to do that. I don’t think I’ve ever felt so lost in my life. Ultimately, my dad was the one that had to give them the okay. We made the arrangements for those that wanted to be near her when she died. Her family was with her and some of her closest friends.
My eldest son was about 13 at the time. He had been next to me by her bedside most nights. He wanted to be there too when she died. Every ounce of me wanted to say no but that just didn’t feel right. So, I said it was okay. I didn’t want him to have to watch his nan die. I didn’t want him to see me so completely broken. I was supposed to protect him from those kinds of things. But it felt like the only right thing left to do.
When the time came, the critical care nurses drew the curtains around her bed, and everyone sat next to her waiting see how it was all going to go down. I had taken to putting my head on her bed and putting her hand on top of it like she was comforting me. It was the last thing I could do to feel close to her again. The doctors explained what was going to happen and then they turned off the ventilation and monitoring machines.
For the first time in weeks, it was completely silent. There was just one heart rate monitor showing her pulse as it slowed down. I was holding onto my sons’ hand. When it eventually dropped to zero, my dad fell to the floor in tears and the whole world closed up around me. I held on to my son harder than I’ve ever held anyone. We cried into each other’s shoulders. In a lot of ways, he was the one supporting me that day and not the other way around. This was the point when everything changed for me.
I wasn’t going to be the same person I was before. I’m still not.
There’s a person I haven’t mentioned so far who was an absolute rock to me during all that. My wife, Amy. She went through every visit, every test, every up and down and every emotion right alongside me. She was incredibly close to my mum. It was my mum that she chose to have with us during the birth of our (my second) son. They were so similar it was a little scary. I know she put my feelings before her own, but it crippled her as much as it did me so when I think about the way a treated her after my mum died, I feel truly ashamed. I wasn’t really there for her at all.
After my mum’s funeral, I knew I’d be grieving for a long time, although I didn’t really cry much. And when I did, it only lasted for a few minutes at a time. You feel a lot of guilt when you don’t cry. You find yourself asking horrible questions like “what if I didn’t really love her at all?”. I didn’t deal with those kinds of emotions well, I just buried it. Eventually though, the immediate grief wore off as I got used to the fact that my mum was gone and I wouldn’t see her again. I went back to work.
I seemed okay again. I remember feeling okay.
I worked for a company at the time which a lot of people might have a moral issue with. They were really understanding. They gave me full pay for the majority of the time I wasn’t in work even though I hadn’t been there long. My family would’ve been in a real financial mess without their support. It’s easy to say some people have no ethics, but it’s not as clear-cut as that… Anyway…
I found myself waking up in the morning with literally zero patience. That had never happened to me before. I have never been a ‘morning person’ but this was very different. I was furiously angry from the second my eyes opened. I shouted (really shouted) at my wife and kids, more or less every morning. I made them cry. And yet they tried to understand. They knew I was suffering.
At work, things were worse. I met with project managers who didn’t know what I was going through and who wanted to know why some random bit of software had taken three days to write instead of two. They made out that it was the most important thing in the world. “This is on the CEOs radar” they’d say. To this day, I still don’t know how I didn’t tell them to go fuck themselves. To be honest, I might as well have done on occasion. Somehow, I didn’t get the sack.
I knew I was suffering. But there was something about this that was self-destructive…. You know that bit in Batman where Alfred says, “Some people just want to watch the world burn”? That was me. I actually identified with that. I was almost proud of that fact! Fucked up right? I was in the frame of mind where Fight Club made sense.
It’s a kind of anger you can’t quite get a handle on. Nobody could possibly understand what I felt. She didn’t deserve to die the way she did. I didn’t deserve to have so many unanswered questions. I wanted a clean break but, tough shit.
The one thing I clung on to was music. Even in the darkest bits of that, music was a friend to me. It’s weird to say but it doesn’t judge you or try to help. If I felt like I couldn’t hold any more anger in, I could go and listen to the heaviest of metal, in a dark room and let things out. If I needed to cry, I could listen to something that matched how desperate I was. I have been a (reasonably bad) musician for a long time so playing guitar or piano almost felt like having a conversation with myself until I felt more in control of stuff. I think everyone should learn an instrument. I would have been up shit creek without it, I think.
It was a way of coping, but not of moving on.
For weeks and months, I carried on. Every morning just as angry. My youngest son didn’t understand why I was so hostile. How could he, he was just a toddler. I felt guilty for it, but I just couldn’t manage being civilised when the world I thought I was in felt so,.. unforgiving. Life isn’t fair. It still isn’t but I have a better grasp on that now.
The worst of it was that my wife, the person who had always been there when I needed her the most, bore the brunt of it all. I was shouty, aggressive, judgmental and dismissive. Even though I knew she was struggling just as much as I was, I didn’t have the emotional bandwidth to deal with it. I was horrible to her and it pushed her away. Eventually, and quite reasonably, she couldn’t stand it anymore. We split up. I selfishly felt let down.
My eldest son, who was the guy who supported me through the worst moments of my life, and who I loved immeasurably was another victim of mine. I expected a boy to act like a man when I couldn’t do that myself. More than that. I expected him to pick up all my emotional baggage. It took the near total obliteration of our family for me to realise that this, was because of me.
And it struck me, for the first time, this wasn’t just grief anymore. I was severely depressed. It took the best part of two years for that realisation to come to pass. I felt like I was broken in a way that couldn’t be fixed.
That was the depression. Anxiety is not like that at all.
It’s hard to put into words how it feels. Feelings in general, I think, are hard to put into words. There isn’t a way of predicting when it will resurface either. I know why that is now (Limbic vs Cortex) but that’s not the point really. It’s a bit like having someone stand on your chest. It’s a bit like the panic you feel when you’re underwater and you can’t breathe or move. It’s that feeling when you’re half asleep and you get that falling sensation that wakes you up with a jump. Except you don’t wake up. You’re already awake. In a constant and everlasting feeling of absolute terror. And you don’t know why. You feel utterly desperate to get out of it.
That’s how I felt this week. Oh, hello Christmas!
I was on the train a couple of days ago and that same feeling hit me. One of the hostesses was complaining about her mum and how she made this and that demand over Christmas and I thought “Fuck you! You have no idea how lucky you are and how much I’d give to have that back.”. It started with me just thinking about how much I was going to miss her on Christmas day. It was a noisy coach and I could feel my breath getting shorter and shorter.
It doesn’t feel like panic anymore. It’s more conscious than that. Less desperate. I’m aware of it now and I have a way of dealing with it. I’m the kind of person who has a system for everything so it’s sort of like watching a friend have an asthma attack, but I’m ‘the friend’. I can, eventually, talk myself back down. I can’t put into words how I do that. Anyway…
It was Christmas. The time of year when we are supposed to be closest to the people you love. My wife and I talked about how the separation would happen. We fought over who would have majority custody of our son. I remember clinging to him tightly as she told me I wasn’t in a fit state to look after him. She was right. I wasn’t. It kills me to say that now, but it was true. I am so thankful that I found a way to move on from that. Other people are not so lucky.
We spent a couple of weeks apart.
I had moved back into my dad’s house (not ideal at 30 something) and I got to see just how lonely he had become without my mum around. He was super brave about it. I knew that he was acting differently than he would have done if I wasn’t there. I knew he was struggling too but he didn’t want to show any kind of weakness around me. We spoke about things and although he was always the guy that had my back, there was an amount of “get your shit together son” that came along with it. Eventually, something hit home. My wife and I got back together, and I made an appointment with the doctor to talk about how I felt.
This is the bit where I’m supposed to say that people knew exactly what to do and got me straight into for some professional help. It didn’t go down that way and I didn’t do that. I told the doctor I didn’t want any medication. Thinking back, that might have helped. I honestly don’t know. He referred me to The Mind Charity. I have some friends who have been helped tremendously by those folks, but I made an appointment and then canceled it. Not out of stubbornness, but out of cowardice. I was scared to admit that I wasn’t in control. I don’t recommend anyone take that path. Get help!
The funny thing is that for some reason, things changed from there. Having someone indifferent tell me I needed help was enough for me. It sort of broke down some barriers I didn’t know were there. For the first time in a couple of years, I felt like I might have a chance against this thing. And happily, I did. I don’t know that I’ll ever completely forgive myself for letting things get so desperate but I’m sure glad I did.
I wish there was a more poignant lesson there but there isn’t. You can’t just be told to get it together. That obviously not how it works. But in this case, at that time, it led me down a path that helped. Don’t know why. So, there’s no lesson really. Not one I can put into words anyway. Seek help maybe. Don’t wait, definitely. You don’t have to suffer alone. The world isn’t as fucked as you think. Some people will just listen.
Day by day, I got better at handling things. Small changes. It was still really hard, but I started to be able to deal with the upkeep of normal human relationships and I’m happy to say my family has never been stronger. That sentiment on its own brings an amount of guilt along with it. Should it really take the death of a parent to make for a happy family? IDK. I can make my peace with that now. If you’re in this kind of a mess, you will too, eventually. Have faith in yourself and those around you.
I love my family and I love my friends too. They were all there for me in the way they knew best. There isn’t anyone that could take the pain or depression away. Nobody could take away that feeling of dread that kept me up at night. That was all up to me in the end. Accepting that was a part of my journey.
There’s a part of me that thinks I just buried it. But if I did, I found a way to do that and keep my sanity intact at the same time. Maybe that’s what we all have to do. IDK. Maybe that’s not so bad.
So where does that leave me now? Well, the run-up to Christmas still sucks so far. But take a look at my twitter bio. It says ‘software badass’ right? The ‘software’ bit is neither here nor there really; it’s just the thing I specialise in. But the badass bit? I think I’ve earned that. It reminds me of everything it took to get where I am now. I get shit for it from total strangers sometimes because they feel like it’s some kind of alter-ego, cocky bullshit. I don’t think so. I don’t really care what they think anymore.
If you think of yourself as a badass or a ninja or a queen or a rockstar then so be it. We’ve all gone through shit that means we deserve to feel like we earned some special place in the world. Maybe someone else gave you that title. Using words like that became popular in my industry a few years ago. I was meant as a way to recognise peoples hard work. I think people who were given monikers like that clung on to them because they had a journey too. So. Be. It. Who can really judge you for that? Use it to remind yourself how strong you can be and try to help others do the same.
I don’t think measuring one person against another is a good thing and maybe we should all make a bigger effort to level the playing field where we can. But we’ll get that stuff right in the end. We’re all badasses. All ninjas. All queens. All fucking rockstars. Every one of us. There’s always a story behind things that we don’t see.
These days my family is doing well. My dad and sister are really happy. I’m honestly in a place of gratitude for the wonderful things I have in my life. I don’t suffer nearly as much as I used to. It’s been nearly five years since my mum died now and this year, I could count on one hand how many times I felt overcome by it. In a lot of ways, I’m really lucky. Some people live with it every damn day.
The one thing I didn’t expect is that it also made me feel really grateful for other people in a way I didn’t before. There are folks out there that work hard to make the lives of other people better whether that's at work or at home. We each have our own journeys to follow but there is something special about people who make the effort to give others the space to find their own way, without judgment. I try to be like that. I think we should all try to be like that.
Anyway. That’s it. I feel a bit better now. If you’ve stuck with me then thanks for reading. If you’re in a similar position then I feel for you, truly. You’ll get there one day at a time. Try using music. Try writing stuff down. Try whatever makes you feel a connection to the world.
Merry Christmas. It might very well be a happy new year.