My name is Emily, I am 25 years old and my dear mum Tracey, age 52 was sadly diagnosed with a brain tumour in November 2019. Im here to tell you a bit about her story so buckle up as its a long old ride!
Back in June 2019 my mum had finished work as normal and came home, made dinner and was sat watching TV when suddenly she went to talk and her speech came out severely slurred, immediately she phoned an ambulance and once at the hospital she was told it was likely a minor stroke. She spent around 2 days in hospital and came home. She had occasional speech issues but other than that her health was really good as it always has been. Fast forward a few months she had another episode where she struggled to talk and her speech was really slurred, similar to someone suffering with a stroke. She went to hospital again as her work dialled an ambulance and she had another brain scan (CT scan). She was told it was fine and sent back home. A few days later she had a phone call from someone at the hospital regarding her scan, someone had looked at it and they were sure it was indeed NOT a stroke but perhaps a brain tumour and they wanted her bought back into hospital for another more in detail scan (MRI scan). Mum had the scan and we found she did have a brain tumour, but the type and grade was not known.
We met with a neurosurgeon and he said he believed mums tumour was a grade 2 glioma. She was put onto the waiting list to have awake brain surgery and that was that. I want to stress that during this time mum lived life absolutely normal, she went to work, she did long walks, she was enjoying life with her children and grandchildren every day. Mum continued to have random speech issues but she never let this get in her way.
May 2020, I had just given birth to my mums 11th grandchild! She had an MRI scan to check on her tumour while she was waiting for surgery, she had these around every 6 weeks just to make sure it was safe for her to still be waiting. It came back showing her tumour had not only grown but it had changed in appearance too. Mum was now an emergency, her surgery needed to happen soon! They prepared us that they thought the tumour may now be a more aggressive one than what we first thought.
June 2020, we had a call to say they had a space for mums surgery, an awake craniotomy. She was ready to go down to theatre but an emergency came so she was sent home to wait again for a phone call, she didn’t mind at all. Did not complain once like the absolute angel she is! We had another phone call a few days later inviting her in for surgery again, this time it went ahead. She was excited- not scared at all. She was looking forward to “getting this thing out” as she would say! She went down to surgery after sending me and my 3 sisters a selfie to show she was fine and happy! Unfortunately due to COVID restrictions at the time we was not allowed with mum inside the hospital at all- so she had to go through all of this alone. It was 6-7 hours before we heard she was in recovery and the surgery went well. The surgeon was happy he had removed all of mums tumour and it would be sent off to be tested to see what type of tumour we was facing. Seeing mums face on FaceTime and her showing us her new hair cut and bandage was the most surreal moment, I was so so pleased, relieved and thankful she came out of surgery exactly the same as she went in, because we was told there was a chance she may not be able to talk or have a good memory along with a huge other list of life threatening and life changing side effects.
Mum went home after around 2 days to recover there where she was safer at home due to coronavirus. Around a week after surgery we noticed a lump at the back of her ear near her scar and it was leaking fluids so we contacted the emergency number we was given an we was asked to take mum back into hospital so it can be looked at. Bang! More bad news- she needed another operation to open up her wound and remove the bone to clean and check for infection. Luckily for mum it was okay and they was able to put her skull bone or “flap” as they call it back in. She went home to recover again, and yep.. you guessed it- she did not complain once!
Mum recovered from both of her surgeries really well and we anxiously waited for the results to come back from her tumour.
August 2020, we had a video consultation with her neurosurgeon to finally find out the results from her tumour testing. It turns out she had a pretty difficult tumour to diagnose and it was sent to London and to Berlin and both places struggled to find a match but they eventually came to the conclusion mums tumour was a grade 4 glioblastoma multiforme (otherwise known as GBM) we was absolutely gutted for this diagnosis as we had read about it when mum was first told it was a grade 2 glioma. We read how poor the prognosis was for GBM patients and thanked god that wasn’t what mum was facing but little did we know she had a much bigger fight on her hands.
Mum took the diagnosis really well, she’s always taken any news really well. She is always more upset for us, her girls, her grandchildren, Her mum, her family and friends & her beloved cats bog & kass. Mum was off work for most of this time recovering. She was told she will need to complete a tough load of radiotherapy followed by chemotherapy for a really long time in order to try to stop her tumour from growing back.
Mum started her radiotherapy around September time, she did it every day for 5 days a week. She lost lots of her hair around the entry and exit routes from the radiotherapy but this didn’t bother her at all. She was a tough cookie always and soldiered through her treatment. It came to her starting temozolomide and unfortunately her body didn’t tolerate this well and by December 2020 her tumour had started to grow back in the resection area (where they operated before). We was absolutely devastated as a family, our mum is the main person in our lives and I personally really struggled with this, I just felt every time we try to get mum better it was bad news then more bad news!
February 2021- mum had a scan followed by an appointment with her oncologist, it was even more bad news. Her scan showed her tumour was growing, and there was more than one, multiple tumours. and the doctors at the hospital decided it was now inoperable and they could only offer her pallative chemotherapy (lomustine) to prolong her life. They gave her a prognosis of 8-12 months left to live. Mum was still thankful for their time and happy to use the lomustine. She started it within a few weeks.
The lomustine didn’t give mum any of the awful side affects they listed off to us when they offered it to her, luckily for mum you’d never have looked at her and thought she was as poorly as she was inside. She was still bubbly, smiling, laughing. She was also participating in charity walks for maggies centres and walking every day to raise money!
April 2021- we had noticed mums symptoms of her tumour getting worryingly worse, she seemed confused/ struggling with her speech/ lots of her messages on the phone wasn’t making much sense, like she was not spelling things right via text or missing words out in sentences. We contacted the hospital and they told us to keep an eye on it. The next few days mum had a doctors appointment when she arrived the nurse asked her what her date of birth was and mum couldn’t say it. When I arrived at her house because when she told me this I was concerned, she was really struggling to talk, the light was hurting her eyes, her vision was not right and whenever she stood up her head was really painful. This was really concerning for us all as mum had always been so well. My sister rushed her to hospital where she had another scan. Unfortunately mums main tumour had grown rapidly since her last scan, she also had a huge amount of swelling on her brain which pushed the central line of her brain over to the other side. She was put on the biggest dose of steroids they offer despite really not wanting to take them. Before GBM mum worked in care for elderly people for a long time, she knew the effects of steroids and has a reasonably high knowledge of medications. she took them out of desperation to feel normal again.
We were also told this meant the lomustine was no longer working well for mum, or unlikely to work well. Her oncologist told us alarm bells are ringing for her about mum and they offered her to try lomustine again and see if it helps her at all. After considerable amounts of research mum decided she still wanted to fight and we spoke to her oncologist about a private option of chemotherapy called Avastin. Avastin isn’t available here in the UK on the NHS anymore & privately costs an absolute bomb at £4,000 per dose and one will be needed for mum every 2 weeks. mums oncologist estimated a whole course for mum will cost around £25,000 as she will need around 6-8 doses. We have set up a go fund me which was absolutely amazing and reached the first target of £4,000 within 24 hours. I have now been able to up it to £10,000 in hopes we will reach this and we can hopefully raise it again to meet the full costs of her treatment. This may prolong her life, this may also give her a better quality of life. My mum just wants to say she has tried everything- and I don’t blame her! I would too! I admire her every single day, and so does anyone who is lucky enough to know her personally or come into contact with her. We now have to stay with mum 24/7 as her vision is affected from the tumour growth and its not safe to leave her alone for long periods of time anymore. My mum is incredibly brave and wants us to share her journey not only to help raise money for her treatment but to raise awareness for this absolutely devastating & underfunded cancer.