My mum was diagnosed with a brain tumour in October 2019. I found the news so hard as we were so close that my chest was painful and my heart would have irregular beats. I couldn’t eat or sleep. The only way to make it stop was by convincing myself she was going to survive despite a terminal diagnosis.
She had surgery that same month and recovered very well, the best they ever saw anyone recover. She had whole brain radiation therapy starting January 2020, and by the end of that month it was clear something was wrong. Steroids made her start to swell and she was behaving oddly and doing strange things. Within weeks she was unable to walk, had no short term memory and couldn’t look after herself. Hospital didn’t really have any answers but told us she could be dead within two weeks. I don’t even remember how I survived the news because my life seemed like a blur and I wasn’t in a good way. To all the doctors shock and disbelief, one day she got up and although she found it hard to walk because she had laid down so long, her motor skills and cognitive ability had improved and was better than I had seen her in years. It was a miracle - my mum was back and better than before!
2021 was a good-ish year health wish, stable scans for her tumour although she did have another brief episode of cognitive decline again but recovered within weeks and could still walk. I saw everything as a miracle at this point and didn’t think anything could keep her down. She was positive and happy.
2022 she was more slow and poorly, particularly from October onwards. She wasn’t the same but I couldn’t face it so ignored it to a large degree. Her memory by Christmas was poor and she wanted to rest a lot. Her scan results did not come in from months prior, they always took a while.
2023 in January she completely stopped taking care of herself and the house. She lost bladder control and lived in a mess. She never ever let herself or her home get that way. I still ignored the fact it could be anything bad and helped her clean and encouraged her to bathe.
By February she lost bowel control too and couldn’t stop being sick. She was taken to hospital on the 9th and was mobile (although less than she had been) and there it was confirmed she had significant tumour progression with another tumour. They told us she would have surgery as the tumour was in an easy place to operate but had to be in two weeks because every day mattered. I was desperately upset but again so very happy and grateful surgery was an option and that my mum could be helped.
Within those two weeks she became immobile again and was unable to think properly. It was a shock to see her go down hill so fast. Surgery still didn’t happen and no one could tell us when it would be, no one seemed to know anything it all.
By the time we reached my birthday on 23rd February she had a consultant appointment where we was informed that mum couldn’t have surgery because she was immobile and mentally couldn’t properly consent. I was shattered to pieces. I was so angry with them for leaving it so long to the point that she became that way then to use it as a reason she couldn’t get any help.
She got worse and worse and was a different person both physically and mentally, almost unrecognisable. The tumour sometimes made her tell her she hated me - I knew that was not true but hearing those words in your mothers voice is particularly painful. She would scream and scream because her tumour made her do random things and it was beyond heartbreaking to see her go through that daily. She ballooned up further with medication and seems trapped in a body and mind that didn’t work. I would visit her in floods of tears at the care home where they placed her for around the clock care. She had a few better days and just kept surviving despite her poor state. I was so traumatised that I didn’t see her as much as I should because it was so painful. The guilt would then eat me alive.
I was her on 10th October this month and she wouldn’t wake up. No responding to my voice or opening her eyes, nothing. The home thought she had an infection and would be ok. She was still the same later that night so an ambulance was called. My elder sister and I saw her in the ambulance but the medic said she doesn’t think my mum was critical and after antibiotics would improve. We almost didn’t go to the hospital knowing she would be ok as it was 11pm by that point and we had children at home. We decided to go anyway just to see mum settle in… by the time we arrived the doctor there said he does not think it is an infection and was likely significant tumour growth or a brain bleed as by that point her pupils remained dilated and she was not responding to pain. She was there but she was gone. Her breathing was heavy and noisy. They said they would scan her but prepare for the worst. We cried and went home to wait.
Within 2 hours we were called at around 1am and given the news - mum had a significant and unsurvivable brain bleed. She would never wake up and would be kept comfortable until she passed.
I didn’t really take it in, how could i? I spent so long convincing myself this point would never come.
We visited her on 11th in the morning and sat with her for hours. Her breathing was still heavy and her body began to turn a funny colour. She had red dots appearing on her arms and neck and it was beyond heartbreaking to see. She was just laid there, looking so very bad. I still didn’t say goodbye. I thought I would have more time to see her again and that she might just wake up. I planned on seeing her the next morning but as I got ready to go, I got the call… mum died. I could not believe it. I still don’t believe it. It’s been less than a week but I still can’t believe she will never talk to me again and I’ll never see her eyes look into mine. I’m relieved she doesn’t have to suffer anymore but miss her so desperately it hurts and now I have to face what I’ve ignored for 4 years.
How can I begin to accept this? Mum was my best friend, my rock. She was so amazing and suffered so terribly I can’t even start to acknowledge the trauma of seeing her go through what she did. I am lost and broken