Posted on Monday 21 January 2019
Tom’s story – I’d be a different person without my CLIC Sargent Social Worker
Tom was diagnosed with a brain tumour aged three and went through treatment, which successfully got rid of the cancer. Aged 22, Tom relapsed after a large tumour was found in his head. He had an operation to remove the tumour, and then went through months of radiotherapy and chemo – his most recent scans show no sign of the tumour.
Tom’s CLIC Sargent Social Worker Hannah is a huge support to him, and he says he’d be a very different person today without her. When he relapsed, he’d just proposed to his now wife Amy, who was there with him throughout the treatment – they married in September 2018. Here, he tells his story.
“When I was going through it all, people were sympathetic and would say nice things, but you felt like no one really knew what you were going through. But because I do, I want to be there for people going through it. I want to be able to give to other people my help. You don’t want to hear rubbish at that time, you want to hear real things, things like, ‘yes, it is very crap’ and have someone who knows support you through it.
Going way back, I was three when I was first diagnosed. I can’t really remember much of my first tumour. I just remember my mum and dad showing me a video as a three-year-old, screaming all the time. Mum and dad took me to all sorts of specialists, and then at some point, they scanned my head and found a tumour which stretched from the back of left eye to the bottom of my brain stem. I had an operation, which the doctors said there was a 50/50 chance whether I would survive – they also warned that if I did survive, there would be a chance that I wouldn’t be capable of doing anything. They removed 80% of the tumour thankfully.
It’s quite emotional to think about it. Even though I can’t remember it, if I think about what it put my family through, it makes me very upset.
After that, things got much better. I had a normal childhood – I had a massive scar on my head so that wasn’t fun, but I lived with it. All through high school and college, that was all good.
Two years ago, I proposed to my girlfriend Amy and she said yes. Then, twelve weeks later, I collapsed and had two seizures. I went to hospital and they found another brain tumour – not the best timing in the world.
Through that time of treatment, I kept thinking about how Amy had a fiancé, who was going through an operation, radiotherapy and chemo, it was really hard to put her through that. It was like it was another person who had to go through this, as well as my family going through it again. Amy was still in her second year at university – she was with me throughout my treatment, and we were planning the wedding as well – that was hard.
I’m a Christian, so we were praying and we had faith that I would get better and we’d get married. At the time, it was hard to plan and do all that, without knowing what the outcome would be. Amy was so strong throughout it all.
I went to Norfolk and Norwich hospital and they found a lump on the brain.
At that point, I was just in denial, thinking ‘why me?’ – I couldn’t believe it."
It was horrible to think I’d have to go through hell. I went to Addenbrookes to chat to the surgeon about the surgery – that was really hard. He was telling me about various ways the operation could be done, the recovery – he also told me that the operation had a 50/50 success rate.
The surgeon did very well – he removed about 80% of the tumour. It was the worst type of tumour, it was Grade 4. Then I had radiotherapy for 30 days – that was five days a week for six weeks altogether. I had to have chemo tablets during that time as well. Then I had to have another six months of chemotherapy.
At the time, I was going to the hospital about every two weeks for my treatment, but there were days where I’d be violently sick so I’d have to go in for tablets to help. It’s safe to say, I’ve seen my fair share of the hospital.
My treatment has left its mark – it’s left me with nightmares. For my radiotherapy, I had to wear a mask which was horrible. I’d have to be strapped down by the face with this mask. I’ve had some counselling about it now. At the time, I was keeping it all in, it was fine and I just got on with it – you deal with the situation one day at a time. It’s when it’s all over, that’s when it hits you.
When I was going through radiotherapy and I lost your hair, and you wake up with hair on your pillow, that was very horrible. In the end, I decided to shave my hair off. I like doing my hair and looking after how I look so not having my hair, it stripped a bit of my identity. Seeing pictures of me without hair now reminds me of all the bad times. It’s growing back now, which I’m thankful for.
I had my operation on 19 May 2017 aged 22, and started the radiotherapy and chemo treatment in June 2017. I finished treatment in February 2018 – that’s when I got the news that all of the tumour had gone, the radiotherapy and the chemo had reduced the tumour by 20%, and they said that’s how things were going to be.
My church was praying for us, there were churches around the country praying as well. My scan showed that the tumour had all gone. That was such a relief – that was really good news. I was on a bit of a high and good spirits for getting married. That was one thing off the mind.
When I was diagnosed, I was very fortunate and was living with my parents at the time, so didn’t have to pay bills and didn’t have that much worry around that time. It was hard still though as I didn’t have as much coming in. It was horrible, it takes your ability to work away – and to not have that security and money was very difficult.
The first couple of months since February, since finishing my treatment, I’ve been getting used to eating again, and just getting the treatment out of my body. I’ve been really tired – just completely worn out from the treatment – I’ve had days where I’d just sleep, I’ve just been getting a lot better. I’ve been trying to build up so I can work more and just finding my feet again really.
I’ve been getting back in to work as well – that had gone on hold while I was on treatment – I work as a maintenance man for my dad so do anything from painting, gardening, handyman.
Amy and I got married in September 2018 – I’ve just been living and getting back to ‘normal’. I’ve been enjoying every day and being me, and not taking the days for granted.
The support I had from CLIC Sargent was just fantastic. I’ve been saying to a lot of people if I didn’t have CLIC Sargent, my mental health would be very low and I would be a completely different person.
You have friends and family, but it’s nice to talk to someone who isn’t in your circle. Someone who doesn’t know you that well, but they’re there to help you. Hannah, my CLIC Sargent Social Worker, would call me weekly, just to check in. To have that time to get everything off my chest and just talk about me and what was happening was really, really helpful.
She genuinely wanted to help – she pointed me in right direction for days, she let me know about a golf day that was coming up for a day out. She put me in contact with Willow Days and through that my wife and I went to London to see Annie at the theatre. Hannah’s been great, it did me the world of good to have that support.
She’d come round to mine to just have a chat, she’d help with my paperwork, so things like the hospital, benefits, charities. To have her to sit down and do that with me, that helped a lot.
She was there for my wife and family as well. She spent time with my sister, asking how she was, she talked to my mum and Amy and supported them as well if they needed it. Hannah went above and beyond.
I’m still in touch with her now – I’m in a much better place now but we still are in contact. It’s good to know that she’s there.
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CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families.