Neelam's Story

Neelam was married and enjoying being a mum for the first time, when she started having headaches. As their regularity increased, becoming daily, she sought medical attention.

Her GP however, was convinced the headaches were linked with her pregnancy. But they became worse, impacting her vision and eventually she collapsed.

It was only then that doctors realised Neelam had a major brain tumour, which urgently required open skull surgery, changing her life as she knew it, forever.

Here, Neelam shares her story:

When I fell pregnant with my first child, I was overjoyed. But, as my pregnancy progressed, it became very difficult. I was experiencing headaches and vomiting a lot. I spoke to my GP about the symptoms, but I was repeatedly told it was all pregnancy related and nothing to worry about.

In 2011 I had my beautiful daughter and I eventually went back to work as a Quality Assurance Officer within a large pharmaceutical company. However, the headaches continued and became more frequent, and I also gained around seven stone in weight. Once again, the GP told me it was hormone and pregnancy related. But, I knew it wasn’t.

Then one day at work, out of nowhere, I collapsed, biting down hard on my tongue. It was only then, that they started to take my headache complaint seriously. I was sent to Addenbrookes Hospital for a scan and the very same day, they told me I had a brain tumour near my pituitary gland.

I was shocked and scared. Both myself and my husband were in tears. I had seen my GP on multiple occasions and not been given any answers. I felt like my voice had not been heard.

They discovered the tumour was of an abnormal size, so the surgeons wanted to operate within a week.

This took a long time to take in. The day before, I had been a working mother, enjoying family life and now, I was facing life-saving surgery.

I was also told, that had the GP listened to me earlier, then there was every change they could have conducted keyhole surgery, a much easier procedure. Instead, I was facing open skull surgery.

It was scary – it was a major operation.

I went into hospital for the operation and I have not been home since.

The surgery went well, but recovery was slow. The doctors had discovered the tumour had left me with a lot of complications. One of which impacted my sodium levels so my body was now unable to moderate them.

This meant I needed specialist care and was put on a limited fluid diet. This involves careful liquid management every single day. But, it was hard, so I was referred to St Andrew’s Healthcare in Northampton, which looks after people with very specific and complex health needs.

When I first came to St Andrew’s I was overwhelmed and struggling with my health. I felt hopeless. Physically I was struggling and very often would become lethargic and confused if my fluid intake was not measured correctly.

But staff took that management on, which meant I could focus on my wellbeing and looking after my own interests.

It was after being at St Andrew’s for a while that I discovered the hospital has a wide variation of activities, which I found was hugely beneficial to me.

Before my operation I had always liked to keep busy and I realised I could do the same, but in a different way. I embarked upon an intense education programme, participating in math sessions and craft groups where I have learnt new skills and knowledge, and it has helped get me out and about within the charity.

Gradually, I started to feel like I may have a future.

After four years at St Andrew’s staying on a brain injury ward, my clinical team eventually decided I was ready to move to one of their independent flats, which has changed my life.

I am able to live on my own, cooking for myself and planning my own activities, but I also have clinical staff on hand to support me 24/7.

I am also able to still engage with all the activities available onsite at the hospital, while feeling like I’m living back in the community.

This has made me feel happy and it has increased my confidence everyday. I am managing my health independently and I’m on a healthy diet. I also interview new members of staff at St Andrew’s and medical students, which led to me being recognised and winning an internal volunteer award, which I could not believe.  I’ve just completed a gym induction so I can start using the hospital’s facilities and I plan to start using the swimming pools there too which are also on site.

I regularly speak to my daughter – almost everyday – and she comes and visits me at weekends.

Although it’s not how I had envisaged my life when I first got married and became a mother, I have accepted my life has changed and I am happy.

My only wish is that my doctor had taken my headache concerns more seriously, because then I could have sought the right treatment a lot earlier.

Now, I will always advocate for other people to make sure they are listened to by healthcare professionals if they think there is something seriously wrong with them.