Up until October 2021 I had never heard of Glioblastoma, from the first day I heard of it till this moment it's changed everything.  My aunt (82)  who came to my house every day helped with my 4 kids did all my washing and ironing had a fall on the 18th September. We were on holiday coming home from Cyprus when I was getting frantic calls asking if I'd seen my aunt as she hadn't appeared at mums for dinner.  

A few days earlier I had been watching her on our security cameras instinctively knowing something was wrong, so this call cemented my fears. Fortunately it had been a fall and she couldn't get up, something registered as serious because she had been incredibly fit.  Because of covid an 82 year old lying in a cold house for 8 hours doesn't warrant an ambulance, she was told to stay at home with a cup of tea and biscuit.... 

by the following day I'd got home from Cyprus and was getting her in to A&E for an assessment. She was unable to walk unaided but we thought her lying for 8hours contributed to this. The hospital were very good, she was kept in and put through a series of tests. By the Tuesday (2days in) i asked why she hadn't had a CT scan as she was displaying stroke like symptoms. A young doctor, sent her immediately and called mu with the results. It wasn't good, it looked like 2 tumours in her brain but they were putting her back in for a full body which showed 3cm tumour on her kidney.  After what felt like a lot of time, MRI and kidney biopsy. By early October we were told it was a brain tumour and by 27th October no treatment options and she had possibly 8weeks left to live.  At the time I couldn't believe it, she was so capable mentally although unable to walk or toilet she could still get the conundrum on countdown and have a laugh and joke. It didn't seem real.  

I had a separate call with the consultant as she was coming home to me and I needed to know what was coming to prepare me and to make sure she was safe and comfortable. I'd recommend this and read read read, it was hard to hear and somewhat indigestible but I had to plan for the worst hoping for the best.  A week after she was discharged, early November I decided to take her up North to Aviemore. Everyone thought we were crazy, but she had to get out of the 4 walls, she didn't have long left and what was the worst that would happen, she was dying.  We had a lovely week away but half way through the week I noticed a dramatic change in her.  Before the holiday I believed she'd be here into January at least, by midway through the week I could see Christmas was unlikely. Her speech started to slur and she was very tired, everything had become harder on her. Although she kept a brave face, getting washed dressed hair done makeup on. We kept the routine until it wasn't fair in her anymore, when I realised we were making her look ok for everyone else and it took its toll on her doing it.

By the end of November she was largely bed bound, only having a few trips in her commode to get washed, otherwise it was a bed bath and catheter.  I was very prepared for it,but it was very emotionally tiring seeing her so ill. They speak of this fatigue, speak up don't let it break you.  She had a few good days followed by awful days, her last good day was the 11th December, she was up washed dressed hair done teeth in. This lasted 90minutes sat in her chair before she indicated she wanted in bed again. By this stage she couldn't talk, the mobility in her entire right side affected everything included her tongue. She was also having mini seizures for which she was medicated and this made her not want to try and talk as much. She would try but it was so upsetting for her and for me.  

As her speech diminished her ability to swallow was a struggle, by the 10th December very little of anything was going down.  After she went back to her bed in the Saturday we had assumed she was tired after a family visit. But she slept all day, by Sunday the nurses came and suggested she had a temperature and possibly an infection.  The doctor called asking what I wanted to do, admit her to hospital or medicate with morphine.  She absolutely didn't want to die in the hospital she wanted to be at home with us. So it was the morphine, I'd read enough to know after the morphine is administered it is the end of the end of life care. All nearest and dearest were called and they came. My mum stayed with us and I kept with her all night, sleeping in her room and sitting beside her holding her hand. By the Monday, her breathing became quite erratic and she was no longer unconscious, which I'd read wasn't the optimal situation. I called the palliative care team and they arrived 10mins later to administer some more pain relief. A little while later, she was calm and gently fell asleep for the last time in my arms holding my hand. I told her it was ok to go to sleep I'd be with her the whole time.  

I wouldn't change anything, it was her wish but it was very very hard watching someone you love so much take the last breath knowing they are gone.  It was 3 weeks and 3 days ago and I'm still going through the motions but I promised I'd write this down in a hope it gives comfort.  We are in the middle of a care crisis so we had a lunchtime care visit for 4 weeks, I was ok with that. My aunt didn't feel comfortable with strangers, her brain tumour made her vulnerable and i wanted her to be as comfortable as I could make her. 

It was hard, but I knew what was coming and the physical aspects of caring weren't difficult, I've 4 children more than accustomed to bottom wiping. It was the emotional tiredness that took its toll and more recently realising that while I thought I was prepared for her death I wasn't. I'd played the role of carer detached from family member who's life would be changed forever once my aunt was gone.