After a near-death experience, I set up a phone line to help people like me

It was December 2018. A normal Sunday at home. 

I had just finished prepping meals for the week ahead when I felt a sudden strange tingling feeling that travelled up from my feet to my head, followed by an intense headache that felt like someone squeezing my skull. I could not breathe. 

At just 39, I was convinced I was having a heart attack. It would later transpire that I’d had a bleed on the brain.  

That Sunday, I had all control stripped away from me. I called an ambulance, but was sent away with painkillers by ambulance and A&E staff. They seemed baffled why we’d called them for ‘just a headache’, even though I ranked my pain 100 out of 10 and was violently throwing up. 

After a terrible night at home where the headache and vomiting continued, I decided to visit my GP for a review of my medication as I suspected it was due to my hypertension.

My GP then pushed for a scan that same day at Princess Royal University Hospital suspecting something very rare but very dangerous. Unfortunately, he was right. 

I was diagnosed with a subarachnoid haemorrhage – a bleed in the brain – and sent in an ambulance at 9pm that night to Kings College Hospital for emergency surgery.  

Until this point, I had no idea how serious it was or what would happen next. My main concern was how my young kids would be dealing with this news. 

I underwent brain coiling, where coils are inserted into the aneurysm in the brain to stop it rupturing or growing. Two surgeries about 2 weeks later, I came back home and was left to process what had happened to me. 

It’s a strange time when you realise that you could have died. I felt scared and tired and absolutely hopeless about the future. I wrestled with ‘what ifs’. One more bleed in the brain and it would be ‘Sayonara, Ms Sharma’. I could not think of anything else.  

I was exhausted, physically and mentally. 

My husband had to take complete charge of the household, along with managing his work, while my mother came over from India to look after me.  

After weeks of sleeping and being watchful of every change in my body, I realised I couldn’t live like this. I felt I had absolutely nothing to look forward to and was just waiting for the next medical calamity to unfold. I needed to change. 

It’s about empowering people; helping them come to terms with their situation, speak to relatives and doctors, and plan next steps

I tried breathing exercises, meditation, going for walks, all of which calmed me down enough to reflect on my new situation. 

The journey of recovery is never linear. Often you don’t just ‘get better’. There seem to be countless challenges along the way and finding the right information and support within the NHS can be challenging. 

Though I had the support of my family and my doctor, I felt anxious and uncertain — and there are many people who have to face medical conditions alone or with little support. 

This is why I left a busy career marketing food brands and joined the charity Compassion in Dying, which puts people in control of decisions about their care and treatment, supporting them to talk, plan and record their wishes when living with a long-term condition or preparing for the end of life. I saw the advert on LinkedIn and it seemed really interesting. So many themes mentioned in it resonated strongly with me and so I decided to apply. 

Instead of encouraging people to buy food, I now spend my days supporting other people, like me, who’ve been dealt blows to their health, using my own journey to help them to navigate theirs and regain control of their lives. 

Since being there, in February 2021, I launched the Peer Navigator service at the charity.  

Through it, I offer support to anyone who has received a new diagnosis or is living with a long-term condition. It’s about empowering people; helping them come to terms with their situation, speak to relatives and doctors, and plan next steps. 

I’ve supported people with various diagnoses, from cancer to chronic conditions. Many callers reach out when they have a diagnosis and are waiting for an appointment with their consultant, an anxiety-ridden period, which can last weeks. 

One of the first callers I supported was a lady with a diagnosis of breast cancer. She was awaiting her consultant appointment and wasn’t even sure if she would be offered treatment due to her age. The diagnosis was sudden and she was very anxious and overwhelmed. 

During my calls with her, she went over the various thoughts and doubts that she was having about what was to come. I reassured her that the consultant is the right person to answer her queries and together, we prepared her for her appointment by thinking through what questions she could ask and I gave her practical tips to get the best out of her appointment.

Like me, many need help managing new and unexpected symptoms. Others need support with reducing stress and anxiety, caused by the news of a new diagnosis and the long waiting periods in-between support from their clinical team.  

Often callers are unaware of many charities which provide support specific to their conditions, or any benefits they may be eligible for. 

Perhaps the most important service I provide, though, is being someone who ‘gets it’ and understands what they are going through - something the most well-meaning family member or the health care professionals cannot always offer. 

With the Peer Navigator service, I’m delighted to be that person. 

You can contact Hina at the Peer Navigator service from Tuesday to Friday, from 9am to 5pm on 0800 999 2434 or email [email protected] 

Do you have a story you’d like to share? Get in touch by emailing [email protected]. 

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