Ikhlas

What cancer were you diagnosed with?

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What age were you diagnosed?

8

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What has helped you to thrive?

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Ikhlas's Story

From what I remember is that while we were living in Riyadh, Saudi Arabia at the age of eight, I started experiencing headaches and falling asleep when we were visiting family friends, which was so unlike me. The doctors there passed these series of the events off as mini migraines.

While visiting my grandparents aboard in Islamabad, Pakistan I had a major and immensely painful headache. I was taken to the hospital there by my grandparents and after a number of scans a tumour in my brain was discovered, which the medical team said needed to be operated on immediately.

We then came down to London and first consulted the Mayday Hospital, where the tumour was diagnosed as a Medulloblastoma. At this particular time all I remember is that the tumour was malignant, I had a 50/50 chance of survival and freaked out at the mention of the word ‘operation.’

I was operated on at the Great Ormond Street Hospital and had my chemotherapy sessions at the Royal Alexandra Children’s Hospital in Brighton. During this time I lost all my hair, grew very weak and sick. My grandmother stayed with me throughout the whole experience. I remember patches of my time there, mostly the good parts of time spent with gran in the hospital room, outings to the park, the lovely nursing staff and doctors. I still have my first hospital band with my patient details. I think I have subconsciously suppressed any painful memories and at the time chose not to know the details of my illness. 

I then underwent radiotherapy treatment to my brain and spine during which time my father attended to me and stayed by my side. I remember the medical team made a mold using plaster of paris to create a plastic mask for me, this was used to cover my head and neck. The team first made a model of my right hand which I have sitting on my shelf. The medical team set up a star chart for me on which to add a sticker for every completed session. My complexion became very dark and I have a vague image of myself as a bald-headed child in a dark blue hat and a pink coat. Any photos or videos we had have been disposed of as no one wants any reminders of that time. 

What I remember very vividly is that my treatment ended on my birthday (1st February 1997) and that for me was the best gift ever. Although I still had ongoing physiotherapy sessions, growth hormone injections and follow-up appointments but my life was going back to normal as I started going to school with my siblings, making new friends, and living at home rather than in a hospital room.

This was just the start of my journey as before the whole cancer episode I had the ability to swim, run, jump rope and ride a bike. Now it feels as though I’m back at square one and have to start all over again. I have been confronted with a number of barriers, hardships, and challenges along the way; socially and academically as well as numerous health issues. I have undergone further surgeries and treatments due to cancer relapses, genetic inheritance, and the effects of radiotherapy treatment.

The presence of the tumour and various treatments needed to cure it, has left me with a series of permanent long-term adverse effects, which I have had to live with and has impacted my quality of life. Eventually, I learned to adapt to these changes, such as wearing wigs to cope with my hair loss and training myself to be left-handed due to weakness of my right side. I have more so now learned to find solutions and alternatives to overcome my limitations and shortcomings rather than complaining or getting depressed. It has taken a long time for me to be aware of them and accept that they will not be going away.