My brave and beautiful mum died just over two weeks ago on January 2nd. Mum had a very rare and very aggressive form of pancreatic cancer, which took her life just six weeks after initial diagnosis. Her cancer spread to her liver and was too advanced for chemo. The doctor told us to 'prepare ourselves' for the worst. We only got a diagnosis at the end of Nov. Watching her deteriorate was the most painful process I have ever experienced. I can only take some solace in the fact that Mum was happy and well in October, and that this process has been short.
I know I haven't updated this blog. I can barely talk about it without sobbing. But I need to record certain events, for my future self's sake.
RealisationAs the school term drew to a close it became increasingly clear that my mother's condition was deteriorating, and rapidly. I knew she had cancer, I knew it was in her pancreas and I knew she couldn't recover from it. I spent a weekend at home with my parents. I didn't return to school on the Monday morning as Mum had a biopsy scheduled that day and I just couldn't bear the thought of leaving her. Dad took her to hospital and dropped me at the train station between visiting hours. As the train pulled out of the station I felt something tear inside, and I wept all the way back to London.
I thought it'd be a one-day thing. I thought she'd be home that night. But Mum was so unwell that the biopsy couldn't be performed on schedule and she had to stay in hospital overnight. When this stay turned into two nights I shot back to Norfolk as quickly as possible, just in time to see her discharged and bought home. I put the Christmas tree up for Mum, and she thanked me. She wasn't strong enough to decorate it herself. I showed her every bauble before I attached it, and we chatted about the memories attached to them.
Mum kept getting her medication confused, so I made her a chart on my laptop to tick off when she took each different tablet. We thought this was working. But one night, after my sister gave her the pills and ticked off the chart, Mum told Dad that she hadn't had her meds. He didn't check the chart and gave them to her again. Once we realised this we knew that Mum couldn't administer her own meds any more. My dad and my sister went upstairs to tell her that they were going to take control of the meds from now on, Mum complied with the acceptance of an infant. I stood in the kitchen sobbing; the cancer had taken my mum's reasoning and dignity away, what else could it do?
Getting Mum to EatOne of the greatest battles we encountered was against Mum's appetite. She just could not eat. I assume it was a combination of two factors: 50% sheer terror and 50% pancreatic cancer. Nurses gave us milkshakes and juices to 'bulk her up', but they just made her retch. I don't think a single meal passed her lips between Christmas Eve and her death. This drove my sister and Dad mad, they wanted Mum to keep her strength up, I did too, but I could clearly see that she was dying and didn't see the point in distressing her (and us) over eating when her entire immune system was attacking itself. The only thing that Mum could manage was whole milk fortified with milk powder, which I mixed up for her with the diligence of a new mother. Several times I caught myself mixing her milk and tasting it, and the irony took my breath away. Mum always drank the milk for me, and she never one complained.
Water retention and constipation are two very common side effects of gastric cancer. Two days before Christmas Mum's belly was swollen to the size of a small space hopper. We called her Macmillan nurse who found her a bed at the hospital to get it drained. More admissions, more agony. The hospital became more and more familiar as time wore on. One night the duty nurse gave my mother a double dose of morphine by accident. When my sister and father visited her the next day she couldn't even lift a cup to her lips...
Morphine O'ClockWhich leads me to question... to dope or not to dope? Answer: DOPE. By this point Mum was on about 30mg of morphine twice a day, with 10mg top-ups every four hours or so. This is A LOT of morphine. It knocked her out, and it was distressing to see, but at least she wasn't in pain. Mum could still sit up and swallow the pills at this point. Later on that too was an impossibility. It made Mum so dopey that she could barely get out of bed to use to toilet, so somebody had to be on hand 24 hours a day to help her get around.
ChristmasWe were determined to celebrate Christmas. I hadn't spent a Christmas in Norfolk in three years, so this year was supposed to be extra special, because we were all at home. Mum had bought be a gorgeous cerise duffel coat from M&S online a few weeks earlier, when she was able to concentrate on books and the internet.
My brother made a schedule for cooking the Christmas dinner, my sister made the starter and I made the dessert. The meal was perfect, and Mum got dressed and came downstairs to sit with us while we ate it. She took a bite of every dish, just to taste it. My sister has some lovely photos of our family at this meal. I won't post them here because they're too painful to look at at the moment, but maybe I'll put them on here another day. While my brother was outside dishing up my mum caught my dad's arm and said 'it's nice to give him a chance to shine'. She was still there, my Mum, despite all the morphine. She went up to sleep. I went up to sleep. Christmas was over.
Final DaysI went home to London on 27th December, I didn't want to, but I needed a rest, as I'd been in Norfolk for nearly two weeks. I called Dad three/four times a day. On the 28th Mum started behaving very strangely. She'd gone from comatose to hyperactive overnight. She kept getting out of bed, walking around the room and at one point she flipped the bird at my Dad! She was ranting about her sister Glenys, who died when she was in her early twenties, and very agitated, basically exhibiting every symptom of
terminal restlessness. Alarm bells started ringing in my head. I called my Dad and told him I'd be home the next day. I called my Head of Department at work and told her 'Mum is entering her final days now'. I don't know how I managed this, but I think I was in autopilot.
I was up, out and on the train at 9am. I called Dad to tell him, he said 'good', Mum was v quiet now, and mostly unconscious.
I walked into the house at 11am, there was nobody downstairs. I walked upstairs and my Dad was lying on the bed with Mum, who was now hooked up to a catheter. She held out her arms and said 'cuddle, cuddle', so I gave her a huge hug and a kiss.
My dad, my sister, my brother and I all took turns to watch over Mum. Every day brought a new development: catheter, more morphine, less morphine, syringe driver, jaundice. Lots of people wanted to come and see Mum before she died. Her best friend visited twice, and sat by the bed chatting away to Mum. More friends came from her work. Maybe it was too much, but who were we to deny these people their right to say goodbye? Everybody told us how unfair it was that she'd got cancer at such a young age, which infuriated me. I don't think cancer is about fairness or misfortune. It's something that happens to people. End of. I know Mum felt the same way because she told me when she was first diagnosed.
They tell you that you should use a loved ones last few days to tell them all the things you ever wanted to say. What does that mean? I only wanted my Mum to know that I loved her. On the night of the 31st I leaned over Mum, so that my face was close to hers, and told her very softly 'I love you, Mummy'. She opened her eyes, stroked my face and told me 'I love you too, Gem.' These were her last words to me before she died. She fell back into the bed with the effort and lapsed back into unconsciousness.
That night I sat by her bed from 2am - 5am and told her about my hopes and dreams for the future. I thanked her for buying me books as a child. I thanked her for staying home with us when we were little. I played her Classic FM and sang her songs that she used to sing to me as a child to soothe me back to sleep.
My uncle (a GP) and aunt offered to come and spend New Years Day with us, to give us all a break from our 72 hour vigil. We were relieved when they arrived, by this point Mum was on a syringe driver that delivered a constant supply of morphine to her bloodstream, she couldn't swallow pills. Mum's sister arrived from Canada, I was so glad she got to see her before she died. The night before Mum died my brother, sister and I all slept in the same room. I had been on the sofa, but the noise of the activity in the room above was upsetting me and keeping me awake. I could hear that there was some sort of crisis going on with Mum's pain management, but I didn't know what it was. I was exhausted and upset and afraid. I asked myself if Mum would want me up there, seeing her like that. The answer came back immediately; No. I crept up to my brother's room and got in bed with him. In the morning I found out that somebody had had to sit by Mum's bed and hit the 'boost' button on the syringe driver every three minutes or she'd start contorting in agony.
January the 2nd. The syringe driver clearly wasn't working, and the GP prescribed a new dose of morphine, which my uncle and I had to search (what felt like) the entire Fens for. Boots told me to come back in half an hour because the pharmacist was on his lunch break. Between clenched teeth I explained that my mother was
dying. We understand that, robot lady said, come back in half an hour. By now I was so angry with my family for making me go with my uncle, because I knew my Mum was going to die that day, and I needed to be there when it happened. But they were right, I knew the roads the best, and I managed to get all the meds and pick up my boyfriend in about an hour flat.
I'd been in the door less than five minutes when my sister ran down the stairs and told my uncle 'Mum's breathing's gone all funny'. This is it, I told myself. She is about to die.
We all went upstairs. Mum's breathing had gone from laboured to rasping. Her eyes were staring up at the ceiling, like she was already dead. She took 3-4 more breaths. I held my father as Mum breathed her last breath. I felt him shaking beneath my arms, his tears falling onto my hands as I gripped him tight. I told Mum 'I love you', but I think she was beyond hearing at that point. She took one last rasping breath, and then... nothing. My uncle ran downstairs to get his bag. He came back up, examined Mum and said 'She's gone'. He and my Dad embraced, both in tears. I made myself look at my Mum's body on the bed. I told myself 'she is dead'. Then I left the room.
The AftermathWe left Dad with Mum. We all went downstairs. I made tea. Nobody drank it. James hugged me. I called my friends. Dad came down and sat on the sofa looking stunned. We didn't know what to say to each other. My aunt called the nurses, and the duty doctor, to inform them of the death. One of the nurses was Mum's friend from work, we told her she didn't have to come and tend to the body if it was too much. She told us it would be an honour to do that for Mum. Mum's body was still upstairs. I didn't want to see it again. It was a Saturday and it was getting dark. I called the undertakers, and gave them Mum's details.
That night I remembered a book I had seen Mum writing in early in her illness. I found it in Dad's room. It was a journal of the early stages of her illness. I called Dad up and we read it together. It contained her hopes and fears, and messages for all of us. It also gave us very specific instructions for her funeral, written in an increasingly shaky hand. I cannot imagine how hard it must have been for her to write those words, but I am so grateful that she did. We gave her exactly what she wanted.
The funeralYou think you've felt pain? Watch your 21 year old brother carry his mother's coffin. That is the very definition of pain right there. It is simply unbearable. My brother was a credit to Mum. He carried her well and he never faltered. One day he will be proud that he was able to do that for her. I had to stay strong, as I had a reading to get through, and I didn't want to be one of those awful quivering wrecks you see at funerals on bad TV shows like Casualty.
The funeral was beautiful, and in the village church, just as Mum requested. When the hearse arrived you couldn't see mum's coffin for all the flowers that people had sent. The 'Ma' wreath that my sister, brother and I bought was in the back window. I hated riding in the limousine, but knew it was a necessary evil to be endured. The vicar was waiting outside for us and told us 'the church is full'. He was right, it was packed. Every single seat was taken, and my uncle and aunt had to sit and watch from the side.
I took my place at the plinth and read
Remember Me by Christina Rossetti. It's a positive and practical poem, and I chose it because it is was what I could imagine my Mum choosing. Mum didn't really believe in God, and she knew I was a hardened atheist. It felt like the last gift I could give her, these words.
The burial took place in the little parish cemetery opposite the church. We watched as the bearers lowered her coffin to the ground. It's not her, I thought, it's her body, but it's not her. We looked at the flowers, and retired to the pub for an 80s buffet.
And now...?I'm writing this on a Monday afternoon. I'm not at work. My GP is concerned that returning too soon could trigger my depression, so has told me not to go back until the middle of next week.
My grandfather (Mum's father) died from pancreatic cancer at age 57. My mum died from it a month short of her 57th birthday. I have been offered 'genetic counselling' by my GP, but what can they do? They can tell me if I carry a gene. Do I want to know this? Right now I'm not sure, so I'll give myself some time to grieve before I decide what to do.
Nothing galvanizes you like watching somebody you love die. I have a whole new perspective on the word 'perspective'. I genuinely don't care about missed buses, or the milk running out. It's nothing. Honestly. Nothing.
