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"I cared for my husband with cancer with an undiagnosed brain tumour."

A loving wife spent 11 years managing symptoms of an undiagnosed brain tumour whilst she cared for her unwell mother and her husband who also had cancer.

Jo Knight, 51, from Southend-on-Sea, first had symptoms of what would later be confirmed as a Grade 3 glioma on her right temporal lobe in 2005, shortly after losing her dad suddenly to a heart attack. Jo was having what she thought were panic attacks or maybe a genetic problem with her heart. She visited her GP who said that she was stressed following the loss of her dad and other personal troubles which Jo was facing at the time.

Jo then soon began waking up with a start in the middle of the night with the now-familiar panic attack sensations coupled with flashing lights in her eyes. Jo took up swimming as a way to combat any stress but she would still wake up to these strange sensations a few times every week even when she was feeling very relaxed.

Jo began also having a dull ache at the top and back of her head, including whilst on a trip-of-a-lifetime holiday to California. She went back to her GP after the holiday and she was prescribed anti-depressants yet she was still not referred for a scan.

“I am not someone who usually goes to the doctor – and my GP even acknowledged that. It took a lot for me to keep going – I went more times than I would care to remember over a number of years. But I just kept feeling patronized and being dismissed when I just wanted to be listened to. The GP said that I would just have to learn to live with my symptoms."

Jo.

Jo added: “I remember the first time I had a panic attack. I just started to feel funny – my head felt strange and I felt like I couldn’t breathe so I went outside and I tried to calm myself down. But, i felt like there was no point in going to the GP anymore - it felt like I was pestering them. It was really frustrating and frightening as I didn’t know what was happening to me or what to do to stop it.”

It was in August 2016 that Jo had her first seizure which led to her eventual diagnosis nearly 11 years after experiencing her first symptom.

She was visiting an elderly aunt to help with some jobs around the house. On the hot summer day, Jo was cutting the grass when she suddenly felt very tired and she also started seeing faces in the flowers which lined the garden. The next thing she remembers is waking up with two paramedics around her and being told that she had a seizure. Jo was taken to A&E at Newham Hospital and, following a series of CT scans, the mass in her brain was found.

Jo discharged herself from hospital so that she could return home to care for her husband, who has Myeloma and has also previously been treated for Non-Hodgkin lymphoma. Her GP contacted her on Monday to pass on condolences regarding her diagnosis and also to arrange an MRI scan. A biopsy confirmed that the tumour type and that it was likely to have been growing for a long time.

Jo was unable to have surgery on the tumour due to concerns over its location and that it would mean that healthy brain cells would also have to be removed to access it. She was also told that the tumour would be very likely to grow back – and she was given a prognosis of two to 10 years.

She asked to be referred to The Royal Marsden Hospital in Sutton where her husband was receiving his treatment so they could both be seen at the same location. Jo then had six weeks of daily radiotherapy followed by eight months of chemotherapy.

Due to her husband’s diagnosis meaning he is unable to work, Jo fitted in her treatment around her job as a self-employed cleaner, which she has been doing for more than 20 years. She was unable to drive so she walked between jobs and had her treatment afterwards. She continues to work now every day for a few hours around her caring responsibilities. She has regular scans every few months to monitor her condition and she also uses CBD oil to minimize the side-effects of her condition including fatigue, problems with her balance and some continuing visual disturbances.

Jo also cares for her husband and her mum who has an acoustic neuroma, which requires regular care across three specialist units throughout London to help with the hearing loss and facial paralysis it has caused her.

For some well-deserved relaxation, Jo still loves to swim after securing permission from her neurologist to do so due to the risk of drowning should she have a seizure in the water. She never swims alone and she stays in the shallow end. She has had one seizure at the pool when an ambulance had to be called. But her anti-seizure medication has now meant that she fortunately hasn’t had one since 2015.

Jo said: “The diagnosis was actually a huge relief. I had known for some time that something was happening and so it was the confirmation that I really needed. For all this time that had been going on – a scan could have saved me from years of feeling unwell and not knowing why.

“I am anxious about leaving it too long without a scan now – I was ignored for so many years and I don’t want that to happen again. I know that things could change for me and I do have days when I am worried about the future. But I try to remain optimistic. I worry more about my mum and my husband than myself. I am often exhausted but I have to just keep going.”

Jo has praised the care that she and her family have received from The Royal Marsden Hospital. She has also told the medical team who care for her to consider her for any clinical trials and that she would like to donate her brain for research in the future.

She said: “The staff are just wonderful – it’s like going to visit our family. They always have a smile on their faces and we have a joke together which just helps to normalize our experience and ensure that it’s not all doom and gloom.

“The hospital has just become part of our lives for the last six years. There is always an appointment for something for either one of us and so we just have to work around it. I have had to learn how to say no to other demands in my life though. Before my diagnosis, I wouldn’t have done that as I would have worried about what people would think of me. Now, I just hope that they understand.”

Jo first heard about The Brain Tumour Charity from a nurse at The Royal Marsden Hospital when she was accompanying her husband for chemotherapy. The nurse had lost her son to a brain tumour so told Jo about the information and support available from the Charity.

She added: “The Facebook support groups have been so helpful. I want to share my experiences in the hope of helping others too with whatever they are going through. I have seen others who have it much worse than I do – it makes me appreciate how relatively well I am and for that I consider myself lucky. I take comfort in knowing that we’re in good hands at the Royal Marsden yet brain tumours are so under-researched and underfunded and something really needs to be done about that.”

Media contacts at The Brain Tumour Charity

Press office contact details:

Phone: Mon-Fri, 9am-5pm: 01252 237864
Out of hours media contact: 07990 828385
Email: pressoffice@thebraintumourcharity.org