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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Louise Black

Louise Black was 42 years old when she was diagnosed with a brain tumour, back in 2005. Over the next 7 years she underwent brain surgery twice, and received both chemo and radiotherapy to manage the disease. In April 2012, Louise celebrated her birthday and the wedding of her youngest daughter Gina, all the while knowing that her tumour had finally spread. In September 2012, Louise passed away peacefully. She was only 49 years old.

“Mum invited me round for dinner one night. She and my sister had bought bases, sauce and toppings to make their own pizzas. I wondered what the special occasion was, as my mum wasn’t really one for cooking all that much! Whilst I ate, Mum was staring at me, so I asked her what was wrong. We all knew she had been feeling unwell, but when she said the words ‘brain tumour’, I couldn’t even take it in. I looked at my younger sister and her eyes were filled with tears.”


Louise’s story as told by her daughter Ruth…

I had just turned 20 when it all happened and looking back, none of us saw it coming. Mum was so vibrant, bubbly, confident and loads of fun. She was born and raised in Belfast, and worked for several years as an Export Clerk for a local Shipping and Freight company. Her marriage to my dad had ended 5 years earlier, and she had just met Sam, who she would later marry. They enjoyed going out for dinner, taking holidays and enjoying some freedom, as both my sister Gina, who was 18 at the time, and I were now adults. We were really pleased to see her so happy, and she deserved every minute of it.

For a few weeks she had been telling us that she “felt strange” and was experiencing a weakness in her right side, which sometimes she lost control of altogether. There was building work being carried out on her house at the time, to create the double extension she had always dreamt of getting, so it was a stressful time for her.  There were times when she went to bed for days with a headache, but for as long as I can remember, she had suffered badly from migraines. Although we worried about her, this didn’t alarm any of us.

One day, Mum and I were having lunch together at her house, and she seemed out of it. I sat down beside her on the couch and asked her to describe how she was feeling, but she couldn’t talk. She just held my hand gently and I could feel it twitching. After a few minutes she came round, and said that she couldn’t believe she had fainted again.  It was at this point that I started to get quite worried, as she hadn’t fainted. I knew that she had been conscious the whole time, but she couldn’t remember. After many trips back and forth to the Doctor, and being treated for most of the regular ailments that could be attributed to her symptoms, she was referred to see a specialist and undergo further tests.

Mum revealed to us in February 2005 that she had been diagnosed with a Grade 3 Astrocytoma, and that the ‘fainting’ episodes she had been experiencing were actually seizures. She tried to reassure us that everything would be alright, and she would have surgery soon. I just went quiet. I think I found it hard to process what was happening at first, as it was such a shock. She travelled to the department of neurosurgery at the Walton Centre in Liverpool that same year with Sam, to undergo surgery for the first time. He toured Anfield whilst she was in theatre, and he says he can’t remember a single thing of that day, just the thoughts that were racing through his mind. The operation was a success, and Mum was later discharged.  Mum and Sam flew back to Belfast, and I remember going to the airport with my sister, so that we could meet them at arrivals. We waited and waited. Everyone had gotten off the plane and we started to get worried. Then we saw her being pushed towards us in a wheelchair, with her head bandaged up. My heart felt like it was going to break. 

Back in Belfast, Mum received radiotherapy treatment to shrink what was left of the tumour. She wanted to get back to normal as soon as possible, and even tried going back to work a few days a week, but she wasn’t able.  Eventually she was medically retired. Despite knowing that one day her tumour would return, she made the best of her life, and embraced the changes her illness had brought as well as she could. Mum and Sam decided to get married, and the wedding was beautiful. Just the happy occasion we all needed, and they hosted the reception in their house as the building work and refurbishment was now finished. Mum looked amazing that day in a traditional white wedding dress. 

Throughout her illness, she never let anyone see her without her make-up or one of her many beautiful wigs on.  Not being able to drive anymore was difficult for her, and she got really frustrated that she had to take the bus or rely on lifts from family members. She also got a bit lonely being at home all day with nobody to talk to, so Sam cheered her up by getting her a puppy. The woman who had never had time for a dog now loved being Mummy to Floyd, a very loving and possessive Rottweiler.

In 2009 she began to feel unwell again, and her routine scan was moved forward. It confirmed all our worst fears. The tumour was back, but thankfully it had not spread and was still very much confined to one area of the brain.  Mum had to undergo surgery again, which was carried out in the Royal Victoria Hospital in Belfast. This meant that there was no stress about having to travel or risk of infection on the way home, and we were all able to visit her when once she had been moved into a ward.  She received chemotherapy afterwards, and my Aunt came over on an ‘open-ticket’ from her home in Scotland so that she could help Mum and spend quality time with her. The two sisters passed their days chatting, watching films and when Mum was able they would hit the shops together in search of bargains.

The next two years saw us all become closer than ever. Gina and I had both started jobs that we really enjoyed and were doing well in, and Mum was thrilled for us. We visited her for lunch or dinner as often as we could, and phoned her every day to see how she was and catch-up on everything that was happening. During this time, I met Gavin, and introduced him to my mum. She loved him, and kept telling me that she saw us both having a lovely life together as we were so well suited.

It’s strange now to think that Mum having a brain tumour had become our normality, and it was hard at the time to envision things changing. It seemed as though everything would just stay the same as it was, with each scan telling us there was nothing to worry about. My sister got engaged to her boyfriend Neil whilst on holiday in 2011.  She had just begun to plan her wedding when we found out that Mum’s tumour had spread, and was now inoperable.

Gina chose to move her wedding forward to April 2012, as she wanted to ensure Mum was there, as the prognosis wasn’t looking good. I think my mum focused on reaching the wedding date, and that kept her going. She even timed her cycles of chemo around it, so that she wouldn’t be taking treatment and suffering the nausea and other side effects it caused during the wedding week. I don’t think any of the guests realised how seriously ill she was back then.  She was up dancing and in good spirits, but later admitted that she had found it a struggle to keep going. You would never have known to look at her though, and it was really like we had our Mum, back to normal for the day.

After the wedding Mum deteriorated quickly and was confined to a wheelchair soon after. The palliative care team started to put measures in place for Gina, Sam and myself to care for her at home for as long as possible. We never considered hospice care, but we also weren’t prepared for how difficult it would be, especially when Mum was no longer able to support her own weight. The normality of Mum being the centre of our family, the woman we answered to, who kept us right and advised us on everything, quickly becoming like our little sister.

We knew the end was coming and she did too. Mum had a massive seizure one night, at the end of August, and was taken by ambulance to the Royal Victoria Hospital. The doctors there advised us to put her into the care of the Marie Curie Hospice in Belfast.  There they could manage her seizures, and allow us to spend whatever time we had left together in a comfortable and peaceful setting. It was less than a fortnight later that we lost her, and whilst we knew that day was coming, it was still a total shock when it happened. 

Mum passed away peacefully on the morning of Sunday 16th September 2012, and the week that followed was the worst of my life.  It was the first week that Gina and I had to live without our mother, and the permanency of this only started to sink in the night before her funeral. Thankfully we both had wonderful partners to help us through our grief, and remind us that Mum wasn’t suffering anymore.   

My sister has two little boys now, Alex (three) and Owen (seven months) who have never met their Granny, but are growing up hearing stories about her and looking at her pictures. Everyone always said that I looked so like my mum, so it is funny when Alex points to Mum in pictures and says, “Auntie Ruth”. I got married to Gavin in 2016, and it was tough not having Mum there to help me choose my dress and calm me down when the stress of wedding planning was getting too much. I made sure to remember her on the day though, in many ways. I made a charm with her picture on it, and had the florist tie it around my bouquet.  We played a song for her at the reception and everyone got up to dance. My wedding ring is the one Mum wore when she was married to my Dad.  We were also fortunate to have Mums’ friend Lynne, a local Minister, conduct the ceremony for us which made the whole service extremely personal for us.  It really did feel like mum was watching over Gavin and I that day. 

It’s been five years now since mum passed away, and every day we think of her and try to remember the happy times. She had a wicked sense of humour, a contagious laugh and gave the best advice. There will always be events and special moments in our lives that we wish she was here to enjoy with us, and that makes us work even harder to enjoy our lives in memory of her. After all, we are both here because of her, and if there was a cure for brain tumours then she would still be here too.   

Ruth Burns
November 2017

 

Brain tumours are indiscriminate; they can affect anyone, at any age, at any time. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

If you have been inspired by Louise’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy

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The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.

Louise Black

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