Posted on Tuesday 15 January 2019
Mo’s story – I recovered then relapsed
Mo was diagnosed with a rare Germ cell tumour in August 2016 after experiencing severe back pain which was dismissed by his doctors. It was Mo’s aunt, who also works at the hospital, who made him go for tests that led to the diagnosis. Mo recovered but relapsed whilst on holiday celebrating the end of his treatment with family but they all really rallied round for him. Here Mo tells his story.
“I had quite bad back pain, I thought it was just normal and it would go away. Over a period of four months, I was constantly going to the doctors but it didn’t get any better. They thought it was muscle injury due to my temporary work in a warehouse and gave me exercises to do which didn’t help in any way.
I wasn’t able to sleep at all, I had to wake up in the night and sleep on the floor. It was really painful, I was just thinking this is not normal for someone my age. I was confused but I didn’t think it would be anything that bad. I knew it wasn’t right but I thought it would go away.
They were giving me tablets to help me sleep but I thought this was not the real problem – at least do a scan. Twenty years earlier my mother had breast cancer and my younger brother had ALL (Acute lymphoblastic leukaemia), they knew the history but still didn’t offer me anything else.
Finally in the fourth month of the pain, they arranged a scan for the end of the month but I never made it to the appointment. I went to hospital before that because my auntie, who works at the hospital, saw me at the house whilst I was vomiting and she said this is not normal and called an ambulance. If it wasn’t for her it could have been very different.
I got the diagnosis the same day I went to the hospital where I was still vomiting. They took samples, did blood tests and urine tests. A few hours later, two doctors came in, closed the curtain behind them, one of them kneeled down and said it looks like its cancer. Mum was there with me, she started crying but to be honest I felt relieved at least I found out what’s causing the pain. I was thinking ‘ok this is what it is and we can deal with this now’.
I was in the same hospital where 20 years ago my mum had treatment for breast cancer and in the same year my brother was diagnosed with ALL. They won their battle with cancer so it made it seem easier for me to think we can through it again. If they can get through it, I can.
They told me it’s curable which gave me confidence.
They told me I would need chemo, four cycles every two weeks on and off. It was all new to me, I didn’t know what to expect. I’m not a fan of needles, so I had a picc line put in.
When I was on the chemo, the type I had was non-stop, it ruined my taste buds so I couldn’t eat anything and my hair fell out. I was unable to communicate and lost motivation to walk and enjoy the games the hospital has to offer.
I felt very welcomed in the hospital – everyone was so nice, it was a happy place it almost felt nice to be there at times. The patients were very nice and so were all their friends and family.
It must have been difficult for my family – they are all working but they would come and stay with me in the evenings even till gone midnight – bringing food and home comforts like my duvet. It meant a lot to me to have their support I was very lucky.
We are a pretty close family but this did help to bring us closer. In our family we say anything, we joke around, laughing, playing cards, maybe Fifa. It was strange to see them there, very different to being at home.
It felt like I had to forget everything else and concentrate on getting well again. I was given the all-clear in October 2016 and applied for college. I was invited to an open day at Kingston College but before I had chance to go I relapsed so I had to cancel and put my life on hold again.
I was in Portugal on a family holiday to celebrate been given the all clear. One day I was in a Jacuzzi and my leg and stomach felt weird, I couldn’t move my leg so I had to get my sister to help me out and they took me to hospital in Portugal.
I was in fear because I thought it could be anything, just a week before, even just a day before, I was absolutely fine.
The hospital was difficult because they didn’t speak English. I was in a wheelchair and they told me to get up and walk, which I did and they said it was fine. I knew something was wrong so we got a flight back the next day as soon as we got back we went straight to hospital.
We did tests all night and at 5am when we all were all really sleepy they said they found a brain tumour. I was in the hospital still with my suitcase from the holiday. I told my family not to worry and keep calm. I was just thinking from then on I’ve got to get through each day as it comes.
They opted for chemo because I reacted well last time. It would be four cycles again but it was more intense and aggressive as it had to penetrate through to the brain. It had to stop at the third round because my body couldn’t take anymore chemo.
I had surgery to try and remove the tumour, I was unsure what to expect. It scared me a little talking about whether or not I will be normal as I was previous to the treatment and the likelihood of any permanent damage. There was also potential side effects of the operation like seeing a black dot in my eye permanently and not being able to drive.
Following the operation, I had radiotherapy to reduce the size of what they couldn’t take out in the op. From now on, its scans and medicine to keep an eye on it. 7 months on since treatment, still unclear whether I will require more or not.
It’s always in the back of my mind that it could come back. You can’t make plans, because I can feel my body isn’t right."
I like to be independent, I used to like playing football hanging around with my friends, seeing them after work. I used to love playing 5-a-side football, I was quite good so I enjoyed it but I’m determined to play again.
CLIC Sargent support
I met Charlotte (CLIC Sargent Social Worker) on my first day, she came to see me in the hospital she explained the charity, she was very nice to speak to and she gave me amazing support.
I was surprised this support was available, she was suggesting things I would never have thought of like help with travel and money issues. She helped with me signing up to other charities too for grants and special days out.
The financial help and the CLIC Sargent grant was important, it helped me a lot especially because I had no work.
Some days because of the chemo I wouldn’t be talking to anyone but Charlotte comes in chats to me and makes me happy. She changes my whole mood – money can’t buy that.
She talks to my mum and helps her in any way she can which takes the pressure off the family. She organised for us to have a break as a family which made a massive difference too.
I can’t imagine my experience without Charlotte, it would have been very difficult she helped me so much.”
Find out more
CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families.