Categories CharitiesHealth

Wakefield woman raising awareness and funding for brain tumour research

Debbie Organ, from Wakefield, was diagnosed with a brain tumour in 2021, after suffering from headaches and low energy for several weeks.

Her tumour was eventually diagnosed after a visit to the opticians, and she is now urging people to attend regular eye checkups, which could potentially be lifesaving.

She is helping to raise awareness through Yorkshire Brain Tumour Charity’s Flat Cap Friday campaign, which encourages people to post “flat cap selfies” to draw attention to the need for greater funding into brain tumour research in the region.

Debbie said: 

“I lost my dad, aunt and a colleague early in 2021. In July I went on holiday and had a terrible headache and had no energy.

“A week later I felt no better so telephoned the doctors. They said it was depression from losing my dad and prescribed antidepressants.”

Debbie didn’t take the tablets as she was convinced this was not the right diagnosis, and continued to chase the doctors for the next eight weeks.

“I was phoning weekly saying I had headaches, no energy, dizziness, ringing in my ear, a flickering eyelid. A nurse practitioner suggested it could be my eyes and to get them tested.”

When Debbie went for an eye test the optician was concerned about the pressure in Debbie’s eye and referred her to the hospital’s eye clinic. There, Debbie did several tests and was told she needed an urgent MRI scan.

“The following week, I went into the mobile scanner at Pinderfields Hospital with my husband waiting outside. A lovely nurse gave me an eye mask and some headphones, and spoke to me as she could tell I was scared.” Said Debbie.

After the MRI, Debbie was told she had a brain tumour and needed to be transferred to Leeds General Infirmary for an urgent operation.

“I was shocked. It didn’t sink in. I came out and told my husband and was escorted to A&E, my head whirling. I called my mum and a few close friends and no one could believe it.”

Debbie’s husband was not allowed to stay with her at the hospital due to Covid rules. Her operation was scheduled for the following day, but another urgent operation overran, so it was two days later when Debbie was taken down to theatre.

“Several hours later when I was pushed back to the ward, I can remember putting my thumbs up to my roommate in the hospital saying ‘I made it to the other side’. She supported me through the week as, due to Covid restrictions, there were no visitors.

“I rang my family and I was in tears, they were so relieved to hear my voice.

“After a few days I was allowed to come home to recover. My husband, mum and a few close friends were amazing and looked after me on the rollercoaster of the recovery journey.”

Debbie later found out that she had a low grade tumour known as a meningioma. The surgeon was confident he had removed all of the tumour during surgery.

Shortly after her diagnosis, Debbie was referred to Yorkshire’s Brain Tumour Charity by her specialist nurse. Debbie received a grant from the charity to help with day-to-day costs, and has since been attending the charity’s Wakefield Drop-in Café and wellbeing walks for extra support.

Debbie and her husband Mark have even taken up a challenge to help the charity raise funds for brain tumour research and support in the region; in September they will be tackling a 21.5-mile hike from Scarborough to Whitby. 

The tumour will need to be monitored in future but Debbie is determined to keep doing the things she enjoys. 

“I might need radiotherapy in the future to stop the tumour from regrowing but I’m here to tell the tale. My tumour was highly receptive to progesterone so my contraceptive had been feeding it; I’ve now stopped taking it.

“All I can say is the NHS nurses and surgeons at Leeds General Infirmary are amazing! I’d tell everyone, make sure you get your eyes tested regularly, it really can save your life. I will never forget my optician.”

To find out more about Yorkshire’s Brain Tumour Charity’s Flat Cap Friday campaign, visit yorksbtc.org.uk/Flat-Cap-Friday