Posted on Thursday 16 June 2022
Mikail’s story: “your whole world just goes and you get swallowed up”
In August 2020, Mikail was diagnosed with Hodgkin’s lymphoma after his parents noticed a lump in the side of his neck. A few months after finishing treatment, the cancer sadly returned and Mikail relapsed.
Mikail’s Dad, Halil, decided to join a support group for Dads run by a Young Lives vs Cancer social worker. He says that being able to speak to other Dads who just ‘get it’ has been a huge help for him.
“He had Hodgkin’s lymphoma and he was all clear after six months of treatment but unfortunately it came back this year so he relapsed so it’s the second lot of treatment he’s having. It was only because we keep getting our scans every three months and in one of the follow up scans showed he had abnormality so when we had the PET scan to check it confirmed the Hodgkin’s had come back again.
“Before his first diagnosis he was throwing up and we noticed that he had a lump in the side of his neck – other than that he was fit of a fiddle – it was only when it started to get quite bad we started to go to the doctors for a couple of months. We were going back and forward – we were insistent for someone to do a blood test so we went to A&E and then someone noticed and said we need a scan done. That’s when they noticed he had cancer.
“It was such a tough time, you can’t believe what’s happening to your child and then when they tell you what it is, your whole world just goes and you get swallowed up.
“He had six months of chemotherapy, because he was stage four – we caught it quite late. This time round he’s had two months of chemotherapy and another two months of chemotherapy which is a slightly different drug and then he had a stem cell harvest which took a couple of days. We’re going into GOSH this weekend – and we’re going to do a week’s worth of high dose chemotherapy and then he’s got up to six weeks in hospital for recovery.
“Everything’s changed. Every little cough you get with your son you think ‘oh my god’. I’ve got another son who is 5 and I think ‘he ain’t going to have it is it?’ you’re triple checking everything. At work, I wouldn’t say I’m depressed but it’s very upsetting. I’ve got counselling starting today – I’ve never had it in my whole life but it starts today. It will be good to get someone else’s perspective to talk to other than my family because it’s quite difficult because all you hear is ‘don’t worry it’ll be ok’ but they’re not going through it.”
Halil’s Young Lives vs Cancer social worker told him about a support group for Dads that he could join to meet other Dads of children with cancer. He now attends every month.
“Being in the dads group has been really good – it’s quite upsetting going into it but I find it quite nice to talk to other people going through it. Other people’s kids unfortunately are terminal or really bad, it’s quite difficult to talk to people if they are worse. It’s good to talk to other people who are going through it.
“When you go to work it’s all about work and it’s difficult talking to other parents about it who are not going through the same thing. I find it really good – one of the Dads is a nice guy, I’ve met him at the hospital a few times already and I have his number I said to him if he ever feels down and he wants to speak to someone to give me a buzz. Being in the hospital all the time and watching your child going through chemo on the machine for hours on end it can be upsetting.
“I don’t feel like we’re left behind I just think it can be really tough for Dads as well. It’s not that we get left alone or left out but for me I get stressed and think ‘if I don’t go to work and I have time off, who’s going to pay for my mortgage and feed my kids’, you’re trying to spin so many plates. It’s emotional and mentally draining for anyone to go through whether it’s a mum or a dad.
Halil and his family have also received other support from their Young Lives vs Cancer social worker, to help find the strength to face cancer.
“We had some sort of help with money, with travel – money for getting him clothes. At work, they’re very supportive but it comes to a limit, there’s a line that they have to draw and say ‘we’ll help you as much we can but we can’t always pay you as much as you can get paid’.
“When he goes into hospital we’re going to stay at Paul’s House. It’s Mikail’s birthday in a couple of weeks so hopefully we’re going to try get Paul’s House (or another hotel) where my wife, me and my son will stay so we can go and see him for his birthday, which is really good. I don’t want him to feel left out at all.
“If you ever need a chat, Jenny and the team will always walk past us in the hospital just to make sure we’re ok. Even the littlest bits can make such a massive difference. Even when we got a couple of hundred pounds from Jenny and the team, that made such a difference. When he was putting on weight or he’s losing weight this time around, to help with anything like that – it makes such a difference, it’s less stress so you can care about him first rather than worry about anything else.”