I’m a cancer carer and this is everything I’ve learnt

But ultimately nothing mattered anymore except getting my mum well again and I promised I’d do that with every fibre of my being. 

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.