Rochelle Bugg was 25 when she gave up her job and freedom to nurse her dying mother. She explains how it was the most rewarding – and heartbreaking – experience of her life.
The silence in the car was deafening as we pulled away from Addenbrooke’s Hospital in Cambridge. What is there to say when you’ve just found out your mum has an incurable brain tumour, with a 25 per cent chance of survival past two years?
I’d never heard the words before, but now they were all I could hear. Sadness engulfed me as I turned my head to stare out of the window. Instinctively I reached my hand across to my younger sisters, Hannah, 20, and Olivia, 16, seeking reassurance that they were still there, checking whether I was in a bad dream, about to wake up.
A wave of tears began to rise inside me. Somehow, I managed to swallow them back down, but before I knew it there was another wave of heartbreak that I couldn’t hold back, tears silently falling and rolling down my cheeks.
Three months earlier, my mum Shirley had what the doctors thought was a transient ischaemic attack, a mini-stroke. But something wasn’t quite right, despite the doctors saying Mum was making good progress. She was tired all the time, struggling to use her right side, and, weirdly, couldn’t stop hiccupping. I had handed in my notice at my new job, cancelled the flat I had rented in London and moved back home to look after her.
I was determined to get a second opinion. One private appointment, 30 minutes and £250 later, Mum was admitted for more tests. It turned out the consultant shared my concerns and less than 24 hours later, the verdict was in: Mum’s symptoms had been misdiagnosed. She had cancer.
I don’t know how long I pleaded manically with the consultant – there had to be something or someone or somewhere we could go – but when I finally stopped, all he did was shake his head. I turned to look at Mum. A lone tear was falling down her face, the sight causing me to break down into sobs.
This couldn’t be happening – not again. My dad had cancer then died. Now my mum had cancer, too.
Mum and my dad James were true sweethearts. The ultimate team. They did everything together – from running several businesses, to bringing up us three girls in a home filled with love and laughter. Mum had always dreamt of a fairytale wedding on an exotic beach, but three kids, the businesses and tight finances meant it got pushed to the back-burner year after year. Eventually, she and Dad were in a position where they had the time and money to start planning.
But it wasn’t to be. When I was 14, and Dad just 47, he fell ill, losing a lot of weight very suddenly and suffering from excruciating abdominal pain. When he finally got the right diagnosis, it was too late: he had stage four cancer of the pancreas.
Instead of a sun-filled ceremony, Mum and Dad got married in a dingy hospital chapel on an autumn afternoon. He was just about strong enough to make it out of his bed for a few hours, saying ‘I do’ from a wheelchair. Just six weeks after finding out he had cancer, he was gone for ever.
We never got over losing Dad, but it did bind us together more tightly. We shared a bond that allowed us to speak without words – which is how I knew that Mum needed me.
From the moment of her diagnosis, normal life ceased to exist. Mum became my one and only focus. Overnight, I went from a carefree young professional in my mid-20s to my mum’s carer and substitute parent for my two sisters.
It was relentless. My life was controlled by the ruthless routine of treatment and endless red tape and admin. The deeper I was pulled into my role of carer, the more my personality slipped away from me.
Knowing Mum was going to die placed an invisible, yet very loud, ticking clock above her head, never letting us forget that we were on an unwelcome countdown to the inevitable. Each tick of that clock made every photo, every conversation, take on a greater meaning. Knowing time was running out made me think about what I really wanted to say and how I really felt. Scribbling a quick ‘love Rochelle x’ at the bottom of Mum’s birthday card was no longer enough when I realised it might be the last one I ever wrote to her.
In total I spent 17 months caring for Mum, during which time things got progressively more difficult and challenging. We went from having to cook for her, to having to feed her, to having to drip water in her mouth when she couldn’t sip. One day, she fell while going to the toilet. After the paramedics had left, I tucked her into bed and caught her staring intently at me, two tears dribbling down her face. ‘Will everything be OK, Ro?’ she asked.
My heart wasn’t ready to hear Mum say those words. In fact, I don’t think I would ever be ready to hear them. But there they were. My mum, asking me for reassurance.
‘Of course it will, my mummy, don’t you worry,’ I told her.
Giving a satisfied nod, Mum brushed the tears away with her good hand. ‘That’s all I need sometimes,’ she said. ‘I just need someone to tell me everything will be OK.’
In that moment, my soul started silently sobbing for my mum and, to this day, it has never stopped. It’s straightforward enough to explain why the practical side of being a carer is hard, but nobody prepares you for moments like that.
Losing Mum to a brain tumour felt like losing her twice. First, I had to watch as the woman I’d known all my life emotionally slipped away, like grains of sand through an egg timer. Then, before I had a chance to get to know the woman who was left, I lost her too. Every now and then we’d get a brief glimpse of the fun-loving, dynamic woman who was still somewhere inside her. But in a way, that hurt more. It served as a reminder of just how much of my mum – the wonderful, compassionate, loving, vibrant, sharp, humorous force of brilliance that she was – had already gone.
I was determined not to let the fact we couldn’t do everything stop us from doing anything. There were the grand gestures, such as our final holiday to Sorrento, a place Mum had always wanted to visit, and the surprise party where Mum’s friends came together from all over the country.
Then there were the smaller, more intimate things, like ‘Triple T’ duty – where one of us would take Mum’s tablets, tea and toast up to her on a tray each morning. This was the job none of us minded as we snuggled up next to Mum in bed in the hushed quiet of the early morning.
A year or so after the diagnosis, Mum was sleeping more and her ability to communicate with us slowly slipped away. People started using phrases like ‘quality time’: I understood the direction in which they were pointing us, but I didn’t know how long it was going to be until we arrived at our destination. I did the only thing I could – opened up my laptop and googled: ‘Final stages of a brain tumour.’
I scrolled down the page and clicked on a link titled ‘Symptom Timeline’, my stomach already churning as the page began to load. I worked my way along the arrow comparing Mum’s symptoms to the different stages. I found a description that seemed spot on. Cross-referencing the stage with its colour-coordinated counterpart in the explanatory table below, I began to read. ‘At this stage patients typically have six to 12 weeks.’
Six weeks’ school summer holidays had once felt endless, but I was no longer a child. I knew how quickly that time would pass.
St Elizabeth Hospice in Ipswich suggested we get a Marie Curie nurse to sit with Mum overnight. When she arrived for her first shift, she looked at the notes, looked at Mum and then at me. ‘I think it’s likely it will be tonight or tomorrow morning,’ she said, gently.
Mum might die tonight.
Hannah, Olivia and I sat round her bedside, each of the girls holding one of Mum’s hands while I rubbed her arm. Surely it was impossible for her to go anywhere while we were holding on to her so tightly? It was three against one. She couldn’t leave while she had her babies trying their best to keep her here.
If she could still hear us, I didn’t want her to listen to crying. I didn’t want Mum to be scared. I didn’t want her to think that we couldn’t cope, and I didn’t want her to feel any guilt. ‘You’re safe, Mumma, just relax. We all love you. We’re all here by your side. Go and give Dad lots of cuddles from us,’ I said.
But it was the last thing that I really wanted. I wanted her to stay with us for ever.
I felt as if I was being physically torn in two. I was willing her to go so she didn’t have to fight any more, but at the same time every fibre of my being was aching for a miracle.
I breathed in deeply, desperately trying to make sure I’d remember what she smelled like and gripped her hand extra-tightly so that I could remember what it felt like to have her fingers intertwined with mine.
Blue eyes still sparkling, Mum suddenly winked. Three times. One for each of us girls. Then she was gone. Just 17 months after first falling ill.
Tears were streaming down my face as I carried a bowl of warm water, a flannel and a small hand towel to Mum’s bed. We took off her nightie and between us began washing her. Being able to do this one last thing for Mum was the biggest privilege we would ever receive, washing every last trace of the illness away from her. It was somehow beautiful, a true labour of love.
Being Mum’s carer was by far the hardest thing I’d ever done, but it was equally the most important and most rewarding. It was my chance to return the love and care that Mum had spent her life giving to me and my sisters, and an opportunity to keep the promise I’d made to my dad the day before he died, when he told me: ‘Look after your mum for me.’
How to care with compassion
Rochelle shares her life lessons for those looking after a loved one.
Trust your gut
It turned out that I was right to question the doctors and right to stay looking after Mum instead of going back to work. Not because I have psychic powers, but because I knew my mum. And that was my first lesson as a carer. If I could rewind time, I’d approach things very differently. I would trust my instinct from the get-go and refuse to let it be silenced.
Moments make memories
I once saw a quote which lodged in my brain: ‘We didn’t realise we were making memories, we just knew we were having fun.’ During Mum’s illness, that became my motto. We knew from losing Dad that looking back on the small stuff was often just as special as the big stuff. It is fun, not finesse, that turns a trivial moment into a treasured memory. No matter how long you do – or don’t – have left, you should always make space for the timeless moments that will never fade.
Giving up isn’t the same as giving in
Giving up is stopping when the going gets tough, even if you know you’ve got it in you to keep fighting. Giving in, on the other hand, is surrendering to destiny and accepting that some things in life are out of your control. It is making the conscious decision to start swimming with the tide after struggling for so long to swim against it. When a loved one has a terminal illness, never give up but don’t be afraid to give in.
You can’t do it all yourself – and you don’t have to
Over time I learned to reframe asking for (and accepting) help as a strength. Having to lean on people isn’t a failure. It’s human nature. I learned to reach out to the right people, tailoring my requests for help so that I asked people for assistance in areas they were skilled in.
You’ve got to feel it to heal it
There’s no ‘new starter induction’ when you become a carer. I thought I was supposed to be upbeat and supportive. I actively avoided my emotions because I was worried they would be too much. In fact, I found the opposite to be true. Now when those big feelings bubble to the surface, I let them flood through me, giving myself permission to cry and scream. Because I know they always stop. Without fail. At some point, the switch flips back, I wipe my tears and carry on with life.
It will pass
What was happening with Mum and what had happened with Dad was too much. The only way I could keep going was to stop about 100 times a day and remind myself of one universal truth: however long it may take, everything passes eventually. Even now, when I’m in my darkest moments, I remember that it will pass and wait for the light. You may never heal completely, you may never be whole again, but you will make it through.
Handle with Care by Rochelle Bugg will be published on 4 March by John Blake, £8.99. To order a copy for £7.91 until 7 March, go to mailshop.co.uk/books*. Follow her @RochelleBugg, rochellebugg.com. March is Brain Cancer Awareness Month: find out more at braintumourresearch.org.
Images courtesy of Rochelle Bugg.
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