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Mental health, friendship and grief after a stem cell transplant - Lewis' story

A young man wearing a cap and sunglasses. His t-shirt reads: the cancer fighters

The theme for this year’s Mental Health Awareness Week is loneliness. With this in mind, Lewis has shared his experience to help other young people going through cancer or a stem cell transplant. For him, it was the psychological aspect that was most challenging but least talked about. He says that being alone with his thoughts was a very dangerous place to be, and talking helped. While the pain will never be gone, he is in a much better place and wants to raise much needed awareness of this aspect of recovery.

My life changed forever just after I turned 17, as I was faced with a truly life changing cancer diagnosis.

I was diagnosed with Acute Lymphoblastic and Acute Myeloid Leukaemia - at the same time! This is very rare indeed, even more so in someone my age. Although I can’t remember the exact figure, I do remember the consultant saying something along the lines of ‘this happens once in a million times’. I truly am one of a kind.

Without treatment, I was told that I would probably be dead within a month. Grim. However, with treatment the chance of survival was around 70%. I asked: ‘Am I going to die? and the consultant replied, ‘Honestly, I don’t know'.

Despite how difficult my experience has been, I know I got extremely lucky. My journey is a long and complicated one, but what I most wanted to talk about was the psychological aspect of going through cancer and a stem cell transplant. Especially for a young person. It doesn’t get talked about enough and I wish I’d been more prepared.

Within less than a year, I’d gone from being a perfectly healthy teenager to being told I had cancer, having cancer treatment, surviving cancer treatment, making some great friends during treatment and then losing one of my closest friends a few months later. It’s a ridiculous amount to deal with. It led me to a dark place but I managed to get through it, and that’s why I wanted to share my story.

Recovery and rumination

My recovery was arguably the hardest part of my entire journey. So many emotions, a whirlwind, in fact. Anger, anguish, despair, disbelief, to name just a few. There’s the psychological impact of you being in hospital and everything that’s happening to you and everything that could go wrong, but also coming to terms with what’s happened to you.

This all hits you later, because when you’re going through treatment you’ve got far too much going on to sit and think. But when you get home, you have all this time on your hands. It’s especially true for someone after a stem cell transplant, because while you’re allowed home, you’re not actually allowed to do anything because you need to give your body chance to build its immunity back up again. That's when the rumination started.

You’re through the treatment and now you have chance to reflect on what the hell has just happened to you. It’s very tough to get yourself out of. Your mind can become your own worst enemy.

Grief and survivor’s guilt

Losing friends made this even harder. I was physically getting stronger, but psychologically that pushed me back. I was still virtually a kid myself – I was 18 and I’d already dealt with a huge amount of emotional turmoil before any of my friends passed away.

Dealing with death any time is difficult, but when you’re young and it’s someone you were close with and they died of the same thing you had – it's very, very difficult to come to terms with. That led to me experiencing survivors' guilt. Thinking, ‘Why not me?’ and feeling guilty for being alive, when they’re not.

It’s very, very hard to get through and it’s not talked about enough. It was the worst pain I’ve ever felt. You want to switch places with them and that led to self-neglect which led to me ending up back in hospital. I stopped eating, I wasn’t taking my meds. It was a very dark place to be in. I needed help, and fast.

Counselling helped, but time was the biggest healer

I received some counselling through the hospital and these sessions helped me start to properly process the whirlwind of feelings I had been experiencing over the past few weeks. I began to turn a corner at long, long last. Although I had made a huge step forward, I knew that I still had a long, long way to go.

After my latest inpatient stay, I was discharged from the service. It didn’t take very long for the realisation to hit that I needed some extra support. I was still deep in a hole emotionally, and I couldn’t see a way out.

My mum found a service through Wessex Cancer Trust, and I have now been going to the same counsellor for a few years. She has helped me work through all of the raw feelings that I had been experiencing, which was hardly an easy undertaking. With her help, I was able to turn things around. I can honestly say that she has helped me change my life for the better. I honestly believe that I wouldn’t have been able to achieve what I have gone on to achieve without her guidance and support.

However, there were times when I felt like nothing my counsellor said could help me. There’s nothing anyone else can say to make it better. Time is the best healer, as they say, and that was true for me. You have to feel the pain. The only option is to keep going and have faith that it will get better eventually.

A young man and a woman with their arms around each other, standing in a kitchen
Lewis meets his donor, Louisa

The importance of friendship

It’s in situations like these when you really find out who your true friends are. I was very lucky as I have lots of amazing friends, who have stuck with me throughout my cancer journey and never gave up on me, even when I had given up on myself.

With my ‘TYA friends’ on the ward, our friendships were unique, unlike any other. The connection you have is truly extraordinary and you very quickly create close bonds with each other. It did occur to me that some of my friends might not make it, but that almost made our friendships stronger.

We were each other's only real support network. My family were great, my social workers were great, doctors were great with the physical stuff, but it’s only your fellow patients who know what it

feels like. You don’t have to explain everything to them for them to understand. You help one another get through it. If you’re having a bad day, it’s them you want to talk to because they get it. They helped me a lot with the psychological side of things, when I was in hospital. At the time I hated them for telling me their horror stories, but now I love them for it because I was prepared. It’s still a shock to the system when it’s actually happening but knowing what was coming did help.

That’s why I’ve written a book about my experiences. I want to get it into cancer charities to help other young people going through something similar. I’ve shared my horror stories – and there were plenty – but I also want to say to them: yes, it’s hard but it’s all worth it in the end.

How to support someone

Being alone with just your thoughts is a very dangerous place to be. As such, the only thing anyone can really do for someone who is suffering with this couldn’t be simpler: offer to be there for them and to listen to them whenever they want to talk. Yes, it really is that simple!

My advice to anyone going through this

It may seem blunt, but the truth is that the pain never truly goes away. It simply gets easier to manage as time passes. I don’t think I will ever truly accept what I’ve been through. I have learnt to live with it instead. I am able to continue with my life, but those same emotional scars, most definitely remain.

The most valuable advice I can possibly give, over everything else; is to mentally, never ever, ever give up. No matter what life throws at you, no matter how bad you feel, no matter how much you want to give up…

NEVER GIVE UP

This is because, and trust me (also apologies for the cliché, but it is true), things will (eventually) get better!

For a long time, I was living one day at a time; I wouldn’t allow myself to look any further than that. Now I am following my dream studying microbiology at the University of Reading. I want to pursue a career in biomedical research, with a particular interest in cancer research. My absolute dream is to find a cure.

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Blood cancer Bone marrow transplant Patient stories Recovery Side-effects