I love a paper diary. There's nothing more satisfying than the scratch of a pen on crisp white paper as you scribble down plans. Being a cancer carer wasn't one of them. I was making strides in my career as a beauty editor and my mum had excitedly started a bucket list of all the things she was going to do when she retired. But on December 21, 2018 everything changed.
I was home for the Christmas holidays and looking forward to lazy days binging on feel-good movies with a box of Quality Street and the cat on my lap. Nothing could have been more at odds with this cosy scenario than the noisy hospital wards, the smell of cancer (musky, over-ripe fruit and something else I can't put my finger on) and the worried side glances and hushed whispers of consultants that became my new reality.
After weeks of tests to determine the cause of my mum's high white blood cell count, she sat me down on the sofa and, in between sobs and ragged breaths, revealed that she wasn't suffering from a chest infection, as initially thought, but melanoma skin cancer (incidentally one of the main cancers to affect women).
Early detection is key.
By this point the melanoma had metastasized, meaning it had spread with the force of a tornado to her lungs, liver, bones and even her brain. My beautiful, vivacious mum was dying but without the PET scan that revealed the full extent of its stealthy progression, this wasn't something we knew at the time.
Instead, we blindly stumbled through Christmas Day, fake smiles plastered on our faces, my mum determined everything should be normal, carving the turkey with her paper crown at a jaunty angle. But only a few days later, she was suffering from such crippling pains throughout her entire body that she couldn't get out of bed. Overnight I went from a carefree 30-something living it up in London to a full-time cancer carer also juggling a job.
The weight of responsibility almost toppled me. I felt so detached from everything. It was like I was suddenly looking at the world through frosted glass as my friends and the fast-paced industry that I work in carried on without me. There's also the role reversal to get used to. Understandably, it can sometimes cause friction when you're thrust into the role of the decision-making adult and the person you're caring for is losing their independence.
While well-meaning, many of my friends romanticised my new caring role as if all it involved was hand holding and mopping my mum's often feverish brow. I didn't have the energy to tell them that in between writing about the latest perfumes and lipsticks (I still had to work part-time), I was lifting my mum in and out of bed; I was bathing her, cleaning up sick, constantly checking for spikes in temperature, preparing meals she couldn't eat or holding her frail hand as the immunotherapy drugs were pumped into her body.
But ultimately nothing mattered anymore except getting my mum well again and I promised I'd do that with every fibre of my being.
Breast cancer is the most common cancer in the world. Know the signs to look out for.
There's no handbook for when cancer strikes - either for the patient or for the people who care for them. Nor will knowing your legal rights – and crucially, where to get help – stop you feeling like you're sleepwalking through every day. But it will mean that you'll have the right sort of support to prop you up when you need it most.
Full disclosure, my mum has survived three bouts of metastatic melanoma (two stage four) since 2018. As an only child, this is everything I learnt about being a cancer carer during each of those episodes.
Recognise that you're a carer
First, it's important to recognise that you're not just helping out. Anyone who gives emotional support; helps with everyday tasks; drives patients to appointments; talks to health and social care professionals on their behalf and helps with personal care is considered a carer. While no one likes a label, recognising that you are a carer can be an important first step towards getting the right support.
Know the details of the patient's GP and hospital team
The Macmillan Cancer Support team that I spoke to for this article were quick to point out that it's important to know the MDT (multi-disciplinary team) who are dealing with various parts of your loved one's care. This includes their oncologist but also the nutritionist who may recommend nutritional milkshakes be prescribed if eating is proving difficult. The person you are caring for may also have a designated Clinical Nurse Specialist who will help to guide them through the actual treatment.
Get an occupational therapist assessment
I can't stress enough how getting kitted out with the right equipment will make things easier for the person you are caring for – and for you, as it takes away some of the heavy lifting (literally) and physical strain. Equipment for the home can include a wheelchair, walking frame, pressure relieving mattress, adjustable bed rest, commode or bath chair.
Normally a hospital occupational therapist (OT) will assess a patient before they go home. But if the person you are caring for is a day patient it is worth asking their GP, a social worker or district nurse to refer you for a free OT assessment. My mum's local hospice was incredible in arranging this for her but you can also find contact details for your local service on the Gov.uk website. Assessments are can be carried out in person or over the phone.
Some types of equipment are also available to buy or hire from your local pharmacy and charities, so it's worth checking out the British Red Cross.
Enquire about a carer's allowance
Carer’s Allowance is the main benefit for carers. If you are looking after someone for 35 hours a week or more, you may be eligible for a payment of £69.70 a week (2022-23). Just be aware that there is a cap on how much you can earn from work while still being entitled to Carer’s Allowance.
Ask for a carer's assessment
A carer’s assessment is conducted by social services and is for carers over 18 years old who are looking after a sick, elderly or disabled adult. According to Carers UK, it is an opportunity to record the impact caring has on your life and what practical support or services you need if you qualify.
Know your employee rights
According to Macmillan Cancer Support, workers have a right to take time off to look after a dependant in an emergency. The only catch is that the employer doesn't have to pay you. This right is important because your employer can't discipline you for taking time off in these circumstances. However, this right does not cover you for long periods of time so the charity always recommends chatting through caring responsibilities with your employer in order to come up with a solution.
Carers UK also has an excellent section on getting support if you work. It goes into a lot of detail about your statutory rights – for example, how all employees have the right to request flexible working after they have worked for the same employer for 26 weeks (six months). There are also practical tips for how to make a request for staggered hours, home working, job sharing or working part-time.
Also check your contract of employment, staff handbook and HR policies to see if you have any additional contractual rights and whether your employer has policies related to caring responsibilities. This can be called compassionate leave, carer’s leave or family leave and can be for a set number of days.
I was terrified of losing my job the first time my mum was diagnosed with cancer. But it's worth remembering that most companies are sympathetic to this situation. I gave my boss at the time regular updates on what was happening and I was able to negotiate a period of compassionate leave and then working part-time from home for two months. By this point I was able to make a clearer assessment of the situation. As my mum was starting to respond successfully to treatment, the Macmillan nurses helped me look into hiring professional carers who could come to the house a few times a day so that I could return to work full time.
Don't freak out if the local hospice gets in touch
Hospices aren't just there for end of life care. They also offer palliative care while someone is undergoing cancer treatment aimed at controlling their illness. My mum has been given two terminal diagnoses over the years and, each time, the nurses at the Phyllis Tuckwell Hospice have been incredible. They've fast-tracked OT assessments and phoned up regularly to see how I was doing, as well as chatting to mum and giving her a morale boost. When she was more able they also arranged for her to come for weekly lunch and art classes at the hospice and that sense of community has proved invaluable for her mental health.
Take a break from social media
Social media is a double-edged sword. It can help you stay connected but it can also create feelings of anxiety and depression if you find yourself comparing other people's lives to your own. When you're going through a tough time, it's so easy to fall down a rabbit hole of social comparison. I found it quite detrimental to my mental health seeing other people's holiday snaps, their new flat, new boyfriend etc, when my life was effectively on ice. According to a study by the University of Bath, even one week off sites like Facebook, Twitter, and Instagram could improve your sense of wellbeing.
Remember that you are only human
You're going to run the whole gamut of emotions when you're caring for someone that you love and it's OK to feel frustrated, angry, depressed and to want to be selfish sometimes. But it's also important to realise when it's time to safeguard your mental health and speak to a professional. The Macmillan Support Line is a great first step if you're anxious about counselling and they can also talk you through accessing emotional, clinical or financial support.
Also try to get out of the house every day. A change of scenery can make you feel just that little bit more normal in extraordinary circumstances. I made it my daily ritual to listen to a podcast while going for a 30-minute walk to help with stress. Wearing headphones somehow gives you permission not to engage in small talk with people you may bump into on route if you don't feel up to it. Sometimes it's just about focussing on small wins.
For more information on looking after someone with cancer, visit macmillan.org.uk.
