Posted on the 10th September 2018

Steven’s story – Diagnosed with Non-Hodgkin’s Lymphoma aged 20

Steven was diagnosed with Non-Hodgkin’s Lymphoma when he was 20. His diagnosis hit the whole family hard, as mum Jane explains.

Steven playing guitar

Steven playing guitar

To begin with Steven thought he had a chest infection, and the GP gave him antibiotics. A couple of days later he rang me and said that he couldn’t lie on his side and he thought his lung had collapsed. So I rang for an ambulance and went with him to the hospital – the doctor said it could either be TB or cancer. It was cancer.

When Steven first got the diagnosis he initially said to the nurse, ‘Mum is taking it worse than me’. We were all in complete shock.

A financial struggle

Financially it was a struggle – I was working part time before Steven became unwell but I had to give up work to be the sole carer of Steven.

We also had to use cabs a lot to get to the hospital as he was quite immobile and we didn’t want him to use public transport - the costs started going up.

Although the hospital was nearby we ended up spending huge amounts on travel as I can’t drive. Steven was constantly getting infections so we were in and out of hospital a lot – at least twice a week. And whilst Steven was receiving radiotherapy we had to go to the hospital daily for three weeks.

We initially tried using buses but Steven could only sit for short periods of time before being in a lot of pain and he was very weak and breathless, we also had a few people touch his PICC  line and it just became impossible.

We then tried to use the hospital taxis but that sometimes took two hours just to get to hospital, and we had to give plenty of time for our appointments so it also became impossible. Our final option was to use taxis, which cost £15 each way. CLIC Sargent grants helped us a lot but we obviously had to use money from our own pockets too and it was a real struggle financially. At some points people had to lend us money.

Treatment

Steven received R-CHOP chemotherapy and lost a huge amount of weight – at one point all he could eat was melons. The side-effects were really difficult to see – he was gasping for breath and really weak, lost a lot of hair and I had to bathe him which was really tough.

I remember when his hair started to grow back it was white and fluffy, and I used to wash it for him and cry behind him, making sure he couldn’t see. Steven started to have falls and had to use a wheelchair, so I made sure to be with him all the time to help him get around. He also attracted illnesses while staying in hospital including E.coli.

Steven died in September 2017.

Steven’s legacy

One of Stevens’s last wishes was to help young musicians with cancer. When CLIC Sargent said they could support, it felt great to tell Steven and he was really pleased. He would be over the moon that there is going to be a song released which he composed and has him playing on it. We played it at his funeral.

Steven was a great big brother to his siblings, he was always really involved and bought them lots of gifts. Kamarni is following in his footsteps and has written a song in Steven’s memory and he has started to play piano and guitar – Steven was his hero. Aliyah is also taking piano lessons in Stevens memory.

Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month. This year, we’re shouting about how much young cancer patients and their families spend on travel costs to and from hospital for treatment.

When treatment is at its most intense £180 goes on their cancer commute. As treatment for young cancer patients can go on for years, families are often plunged into debt.

It’s not right, and the government isn’t doing enough to help. Young cancer patients and their families get very little support for travel costs, and most of them don’t qualify under the government’s current system.

This has to change now. Sign our petition challenging the government to create a travel fund for young cancer patients.

They shouldn’t have to worry about mounting travel costs when they’re going through treatment. Together we can change the price tag.

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