Emma’s Story

I recently invited my instagram followers to share their grief experiences/stories. Here is Emma’s account of how she lost her Mum, Karen, in December 2019.

I lost my Mum last December to a butterfly glioblastoma. It’s a tumour that grows from the centre of the brain outwards, and looks like it grows within the structure of the brain. The odds of survival are very low. My Mum was a little old lady at heart. This was because she was raised by two elderly aunties within the family. Rose and Janet. Rose was her “Mother” though. My Mum was left as a young child when her mother left to get married and didn’t come back. I only just recently discovered through research that her Granddad was Rose and Janet’s brother! To my Mum, everyone was called Auntie and Uncle. It was very important to my Mum to have a good relationship with her family unit. She still insisted on buying me clothes and giving me care packages at age 28! Because that’s what Rose did for her. Despite my insistence that I have a job… which provides me with money to live in exchange for labour!

In November of last year, on my birthday, it all changed.

I’d just left my job to become an IT Manager at a new place. I’d taken the last of my holiday then opened my birthday and new job card my Mum gave me when we visited a few weeks prior. My parents live a few hours away, so I spent my birthday relaxing at home with the intention of visiting that weekend after my leaving do that week. Then my Dad called. He didn’t sing happy birthday over the phone as usual, but asked me how my day was going. Mum had recently been brought into the hospital for a check up. Her MS had been getting worse as of late. She was forgetting her medication, but that aligned with the “worsening” they saw on her MRI from September. She was also telling us about people that were in the house that we know hadn’t been there. Including my friend and I who had apparently stayed over for a night out together… something we did 10 years before. We were concerned about these new symptoms, but that’s just MS. A stew of every symptom you can think of.

That’s what happens when your brain wiring is attacked by your immune system.

My husband gets home and tells me he’ll drive this weekend to see Mum and Dad. I thought “But I have a car. It allows me to drive places?”, and motorway driving is something I’m used to, but he insisted for some reason. We drove straight to the hospital and Dad messaged me the ward number. Neurology, I think. We sat with Mum for a while. She was in front of the nurses’ station because she fell trying to leave earlier. She’d messaged a bunch of people asking to be picked up too.

After some discussion my Dad says “So it’s not the MS”… silence followed by a glare from me.

“It’s a brain tumour”.

My Dad is sometimes not great at telling news. My Mum stared into the distance silently. She didn’t say a word. She rarely spoke. Did she understand? “How big? Where?” My Dad pinched his finger to his thumb smaller and smaller. Thank God. Oh…wait he’s closed his finger and thumb?

Then he points into the circle he’s made and says “This big. In the middle”. There are better ways to tell someone Dad!

“Ok”.

“That’s how I thought you would react”.

We make jokes with my Mum about us all shaving our heads. My Dad and Husband are both bald, so they noted that they were already committed to the cause. I don’t remember my Mum speaking. We were told her treatment was scheduled for a multi-disciplinary review in a week. I decided to stay for a bit longer. Over the next few days she has a seizure. They put her on medication that made her pupils dilate and she lost the ability to talk. Her hands gripped randomly and twitched. I decided I didn’t care about my new job anymore. What I didn’t know was this was my new Mum now. Over a few more days she learned to speak some basic words. “Speak Help Board”. We fashioned a pen and paper, but she fell asleep again before we could get anything.

The occupational therapist we asked for didn’t bother to turn up to help us with this when we asked for it. Then the neurosurgeon entered one Friday. They had some news. “Karen! Can you look at me please!” My Mum stared at me concerned at the strange man shouting at her. “I think it’s best if we get a room”. My Dad and I exchanged a look and followed down the hall. “She had a very aggressive tumour. It’s inoperable as she’s unable to walk to the operating table. She has about two months”. He was quite cold in his delivery. But I guess that’s what you want of a brain surgeon.

In my head I thought “If only we had some sort of chair with wheels! And the ability to lift a person! If only she was in for an MRI a few months ago and could walk and talk then! If only she hadn’t had to wait a week for a review before she had a seizure that made her unable to walk!” But it didn’t matter now. How did it not matter? “What do the next few months look like?” My Dad was glad I asked this. “She’ll sleep more and more. Then drop into a coma and pass”. We were left alone for a few minutes. “I don’t want a step Mum” I said. Trying to make a dark joke. It’s one of my biggest regrets. No one tells you what the right thing is to say.

We decided not to tell her. She was hallucinating, unable to speak, more than a few words, and there was no way to give her the message and know it reached the other side clearly. If we needed a minute, we removed ourselves from her room. So proceeded another week of trying to see if there were any other options. Holding her hand. Watching her decline. She forgot what she looked like in old photos. That I was her daughter. I showed her a photo of me as a baby. “That’s a cute baby!”.

That’s your baby, Mum. I’m your baby.

At the end of this week, she had meningitis, fluid on her brain, tumours in her neck, and the brain tumour had doubled in size. We begged her to speak, played her music as she mimed the lyrics. She knew all the words to Bohemian Rhapsody. The line “I don’t want to die” made me feel sick.

Two weeks. That’s what they said after they saw it was doubled. We made the decision to remove her fluids and food. She wasn’t eating anyway. She just slept. We couldn’t lean on the bed or she’d get the most awful pain in her neck and head. No one tells you about how boring the process of death is. How you will sit in the hospice on your phone whilst your dying mother lays sleeping. Feeling guilty. Because there’s nothing else to do. I couldn’t tell her all the things I was going to miss because we didn’t want to scare her. Instead I found a loophole! “I’m really missing our shopping trips right now Mum” I said as I washed her hands and face; tears heavy in my throat.

She passed just three weeks after diagnosis holding the hands of just my Dad and me. I got a feeling she was about to go, so I stopped Dad from going for coffee. We were tired and were expecting to do shifts again sitting in the chair by her bed. “Mum, there’s been a song I wanted to play for you” Vera Lynn – we’ll meet again played from my phone. She didn’t make it to the end of the song. My Dad ran to get the hospice nurses and the song finished as they confirmed she had gone. “What a beautiful song” the nurse said.

I recently read that it’s not the actual moment of death that hurts you. It’s every day after that they stay dead.

Combined with the Coronavirus, I feel like I’ve stepped into another dimension. The best way I have found to describe it is with head and heart. Head understands death, everything that happened and that this is my new normal now. Heart is childlike. She constantly asks when my Mum is coming back. She doesn’t want me to move house because Mum won’t know where I live when she comes back. She doesn’t accept death as a concept because it’s just not possible. The “me” part is pulled between the two. The current coping method for me, 7 months in, is denial and staying busy. Perhaps it’s not healthy, I don’t know, but it means I can function most days. It’s helped having a new job because most people have no idea. I’m still learning to be comfortable dropping it into conversation with people who don’t know.

I’ll get there eventually.

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