Jak’s Story: ‘I had to go in for surgery on my own’

Despite covid restrictions relaxing elsewhere, some young cancer patients are still having to go to hospital alone. Young people who are being supported by Young Lives vs Cancer and Teenage Cancer Trust have come forward with heart-breaking accounts of having to face cancer alone. Young people like Jak, who, having received his diagnosis news over the phone when he was on his own, has been to every appointment, surgery, and treatment visit on his own from the moment he was diagnosed.

At first I think you’re in such a denial stage, you don’t want to admit it to yourself at all. The type of cancer I had it started off as a melanoma skin cancer. I found a spot on my back, for ages I knew it was there but I didn’t want to admit it to myself. The worry in my head started to get to me. I asked people questions and the side effects I was having; the itchiness, it was constantly making me feel sick all the time, tiredness, so I went to the GP and as soon as she saw it, she referred me to the hospital. That in itself was frightening as that was the first person I’d seen.

When I got to the hospital, I saw two doctors who were wonderful, they did a biopsy straight away. It didn’t remove it, it just removed the top layer of the skin. It was a waiting period, it was about two and a half weeks. I had the phone call, I was in my house, to say it had come back as a melanoma. My world just crumbled, I was so shocked and I didn’t know how to handle it, I felt lost for ages.

Again, it was a waiting period to see doctors and professors. Went again and they removed a 2cm incision to take it out, went for a CT scan then praying and hoping that was all it was going to be and again waiting game for it to come back and when we got the results of the CT scan it had spread to my right groin so we had caught it obviously a bit too late.

I had to go in for surgery and on the morning of the surgery I had to go in on my own which was just horrendous, I was so frightened. Went in for the surgery and – touch wood – I had the most amazing doctors and nurses, they put me straight through for my surgery. I had a spinal and I had two operations in one; from my spine more or less to my hip I had a big incision to remove the tissue from my back and then on my right groin I had the lymph nodes removed. Woke up from my surgery and where I’d had my spinal it was a really nerve-wracking thing so I woke up and the stitches had burst so that was another setback. Then they allowed me home.

Again, it was a waiting game, I was going for blood tests and scans. Then I had a phone call to say the surgery had failed, so at that point I was thinking ‘where do we go from here?’ you hit a brick wall, like it was empty promises. You felt like everything you were going for, was ten steps back all the time. Then I went to see a professor in the hospital and he said it would be a year’s worth of cancer treatment so now I’m undergoing immunotherapy. But I think now I’m sort of accepting it but at first it really took a lot for me to accept it.

I feel like however you say this is going to sound insensitive but skin cancer as a whole isn’t covered as a topic at all I don’t think. I asked a friend of mine because her mum had one just on her nose, she said ‘yeah we just had it removed and it was fine, we’ve been followed up every six months after and it’s fine.’ I’ve asked a few people and I’m so thankful no-one else has had to go through what I’m going through now, but because you hear so many people get away with it lightly, in your head you don’t think you’re going to go through what you’re going through.

When I first had that phone call I completely broke down. I was just so confused and I just thought ‘why me?’. Everything that was happening I felt ‘oh I’m getting somewhere’ and then I was knocked back down, obviously keep getting up and going again back to square one. It’s really really hard at first but I think slowly and gradually you learn to know how to handle it and be brave.

I think it was a lot harder over the phone because it didn’t feel like real life. The first phone call I had, I was at work. I remember going outside on my phone and it just all hit me at once. I was nervous and I was shaking, I remember going red in the face and tears and I thought ‘calm yourself down, go back into work’ and I think now looking back it was a really silly thing to do. You need to know your feelings are always valid and I think walking away from your feelings can make you feel worse. I went back into work and I sort of just put a brave face on and pushed it away.

The second phone call I had – I had an abscess on my tooth, I had really bad tooth ache and I was waiting for my dentist to ring me back to book an appointment and I was sitting at the top of my stairs above a window to get some fresh air and I answered the phone expecting it to be the dentist telling me to go to see them and then it was that news. I remember just screaming. My mum was in work at the time so I was home alone at the time, you don’t know what to say. They were on the phone saying ‘we’re sorry’, you hang up the phone and that seems to be it, you feel at a bit of a lost cause. I’ve had the most fantastic doctors and nurses but I feel like when it’s over the phone you feel like you put down the phone and think ‘what now?’, where do you go from here with this information. Then it’s the waiting game of what’s next and where to go from here.

I’m doing nine cycles (of immunotherapy) over a year. At first it was a bit difficult for me because when I first came out my surgery they were like ‘right ok you’re done…if anything was to ever happen [which they kept saying was below 10%] you would have to go in for treatment for the year’ I think that built up my hope a little bit as well so I was disappointed when that happened. So I’m doing nine courses over this next year, I started in December. I go in every six weeks at the minute but they want to do six weeks for six months and then they want to do four weeks for six months but it’s all a bit up in the air at the minute so we’ll see how it goes. They’re doing CT scans at the minute and the spread is reduced. It’s just really hard to take in, when you’re sat there on your own and they’re firing all this information at you.

When I first went into A&E, I had to go in completely on my own, my Mum had to drop me off because I couldn’t drive. I asked them at the time, my mum was worrying like mad and she was sat outside in the car – down here it’s really really cold and she was sat in the car and she didn’t want to keep the car on to waste the petrol with the heating on. I kept telling her ‘go home, keep in the warm’ but she didn’t she stayed outside she was persistent about staying outside. I was really frightened and I kept saying ‘is there any chance I could have my mum?’ obviously I’m really careful about what I do as I don’t want to catch anything like covid, and make myself feel worse than I do after my treatment so we’re both really careful and they said no, they would not let my mum in the room. You sometimes just need that comfort blanket. For the people that suffer with that daily, it’s just a horrible thing to know what they go through.

I said to my Mum when I came out of the A&E room, when I first went into the A&E room I remember looking and there was a young girl and she had a bandage wrapped round her knee and she was sat between her mum and her dad and I remember thinking ‘it’s nice she can have that comfort round her to get her by’ but then in your head you question ‘why can’t I have that comfort, why have I got to do all this on my own?’

That is probably the one thing I have said all along, it is so hard to relay all of the information. My parents have split so when I come out of hospital or come out of a scan or appointment or treatment, whatever it might be, my Mum obviously wants to know straight away what’s been said and what’s the next steps and then my dad’s asking questions and then my friends what to know and then my grandad might want to know and my nan might ring me with a question. Whilst you’re sat there and you’re being fired all this information they’re telling you ‘you’ve got to do this, you’ve got to do that, you’ve got to go there, this is the next step, this is what we’re doing now, this is what we’re doing later’, by the time you’ve finished the hour appointment, what they’ve said at the start it’s hard to remember. You’re thinking ‘got to remember that, got to remember this’.

It got to a point where I struggled to relay information so what I do now is I ask if they can write it out for me, because 99.99% of the time they have it written in front of them. I have my folders where I keep things so if I have an appointment and they ask where it was or what happened, I know it’s there. I do ask for my notes or if it goes to the professor and he tells me a new bit of information I ask if he can jot it down or he emails it. I struggled so much to pass on the information. Sometimes you’re going to hospital and you’re sat there for two and three hours, when you come out you just want a little bit of peace and it’s so hard because everyone’s caring and worrying about you, you can’t turn round and just ask ‘can I just have two minutes’ because you feel guilty making them feel like they’re nagging so you’ve got to sit there for another hour or so explaining what’s next and it just feels like constant all the time.

On top of everything going on I was financially worrying. I was thinking ‘how am I going to pay my car insurance this month?’ I’m really fortunate because I have lovely family so if I was ever to struggle they’d be there no problem and obviously there’s not many people that are in my position and have that so I’m extremely grateful for that but obviously at my age you don’t want to have to depend on anybody else, you’d like to stand on your own two feet but circumstances are circumstances.

My friends were absolutely heartbroken, they were really gutted and that upsets you a little bit because you feel like you’ve disappointed them, not that you do, but again it’s the mental side of it. You play it over in your head, you overthink and think you’re constantly upsetting everybody and have this burden over everybody. It’s the mind games – you think ‘should I maybe not mention this’. One of my best friends who I’ve grown up with, she’s getting married this year and it’s her hen do they’re going to Spain and my treatment has fallen over the week we’ve booked to go. I asked to change my treatment but they said they can’t do anything about it so I’m having to miss that which is gutting, because you want to be there for your best friend. Typically, another treatment is the day before her wedding, it’s one of them things it can’t be helped and my health will come before anything. Me and my friends are more like family, we’re so close.

Jak shared his story as part of the #Hand2Hold campaign to raise awareness of the challenges some young people with cancer are facing due to the coronavirus pandemic.