My life has changed drastically in the space of only four months, and so have the lives of my family. In April, I was living on a different continent, about to complete my third-year exams and applying for internships and placements for the coming summer. My Mum had just started a fulfilling and exciting job with BBC Radio Manchester. Within the space of a week, any semblance of what had been a recognisable and secure living had been obliterated. A single word, ‘leukaemia’, had destroyed any prospect of continuity in any of our lives. My Dad, who works 9-5 hours despite being old enough to retire, was catapulted into a role of full-time caregiver, breadwinner and housemate to a 22 year-old (yours truly). My brother was stripped of his ability to complete his first year at University to his full potential. My sister was left isolated and feeling unable to help as she watched from the opposite side of the world. 

The more I stood back and realised the full force of effect that radiates out from the affected person, the more I’ve wanted to vocalise this experience in order to help anyone else in a similar situation. For a while it was something I wanted only close friends to know about. It felt odd, inappropriate even, to talk about something so personal to my family with someone who didn’t know my Mum. But now, I realise that the brutality of the disease lies in it’s randomness. It’s simply luck (or a lack thereof), as my Mum keeps saying. I don’t believe that anyone can be fully equipped to deal with something like this, but I do believe that there are steps we can take to ensure we take proper care of the person and support them in the best possible way.

Supporting the person: in the right way

Visiting an inpatient is hospital is odd and, for some, entirely uncomfortable. However, for the person who is ill, your visits very quickly become representative of any sort of routine in relation to the home that they are otherwise missing. Without sounding horribly clinical, sticking to a specific time and being equipped to deal with whatever the person’s needs are on any particular day are paramount to the effectiveness of your visit. Perhaps the most surprising part of the long amounts of time I spent with my Mum on the ward during her treatments was the intuitiveness you have to instinctively pick up. At first, the medical equipment and sheer number of drugs, needles and nurses are enough to send anyone running in the other direction. The most important thing I found at this time was to put any squeamishness and embarrassment I had to the side and just be able to give my Mum what she wanted at the time. Taking each day as it comes is unfortunately the nature of certain long-term illnesses and the way in which they affect our bodies. Some days, reading a book out loud to the person is what they need as they drift in and out of sleep. Others, ridiculous amount of humour are required to combat the miseries and emotional complexities of illness. Sometimes, you just have to sit in silence and hold their hand. The most important thing is that you are able to gauge what that person wants and needs, and that you are able to adapt to this as their health fluctuates.

Amongst the deluge of cards and well wishes, I couldn’t help finding myself a tad perplexed with the language that was used in a lot of the cards. “You’re a fighter, Vicky.” “You’re stronger than this!” “You can beat this.” Without me having to probe her, my Mum brought this up with me. In her lowest points, she is irritable and frustrated, but you can’t take this personally, or it will drag you down to a new depth. At other times, she is introspective. She said to me, “I don’t understand why people think I’m fighting. I’m not fighting. I’m just laying here, passively. There’s so much expectation for me to be strong.” It was then that I realised there is a massive problem with the way in which we talk to cancer patients. The language that we use to encourage them to get better — although kind in sentiment — can sometimes be off-kilter. It forces a terrible expectation to be be strong on those affected. It encourages them to be less honest on their bad days, to even put on a brave face when they see visitors. For someone whose life is in the balance of whether they are going to live or not, forcing any sort of expectation of bravery on them is practically inhumane. It is so important that we let them talk honestly about their feelings, and even encourage them to do so without being forceful or intrusive.

Supporting those close to the ill person

At the time of diagnosis, I’d never really considered the impact of my Mum’s illness on anyone except herself. I shortly learnt of the full force that her illness would take on my Dad, who put my Mum’s, mine and everyone else’s needs above his own instantly and without consideration. His life for a while was getting up, going to work, and going straight to the hospital where we’d swap shifts, and I’d go off to work. He’d stay there until he fell asleep in the chair next to my Mum’s bed and she’d have to plead with him to go home. He barely ate or slept for the first 6 weeks of her treatment, his entire life revolving around keeping my Mum comfortable and well-looked after. He barely spoke to me at this time. It was a strange thing to see my Dad suffering so silently, wracked with anxiety about my Mum’s health, yet everything still revolving around her whilst he was so obviously deteriorating. 

A friend of my parents’ asked of me a few weeks ago, “Are you looking after your Dad? People often forget about the ill person’s other half.” It only really dawned on me at that moment that it’s as important to look after the people around you during trying times as it is to care for the person who’s ill. Not letting the stresses of illness cause cracks in the relationships you need to rely on is paramount to everyone’s wellbeing - the affected person can only recover fully if they feel they are being supported by a strong network.

Supporting yourself

Myself and my family are unbelievably lucky to have so many wonderful people looking out for us. During the roughest times, we have had multiple neighbours and friends dropping off meals, giving us lifts to the hospital and even offering to do our washing for us. Me and my siblings are also blessed with having extremely supportive friends who I know would do anything to help us. However, I would be lying if I said there were times where I really wasn’t coping emotionally as my Mum’s health declined rapidly. Pretending that its not happening really isn’t that hard, but holding down a full-time job, attempting to navigate my university’s infinitely complex deferral process and living in a house which had literally had the life sucked out of it was undeniably gruelling. At these times, knowing you have a support network of some sort is of extreme importance.

However, it’s not always possible for everyone to have the same sort of personal support systems. In this case, there are many fantastic alternatives. Maggie’s is a charity that has open centres across the UK which are purpose built for providing a quiet space for anyone to go in and receive advice about living with cancer. Whether you’re a patient, family member or even a friend, they open up the space to anyone and everyone who would like to talk to them. There’s no pressure to even speak to someone - you can simply use the space how you wish. 

My Mum is currently 40 days post-allogeneic transplant and seems to be doing relatively well. This isn’t luck, it’s due to a frankly brutal treatment regimen and the round-the-clock care of her nurses and doctors to keep her alive. Getting cancer may be a numbers game, but nursing the person back to health is the result of serious amount of hard work. Chronic and severe illnesses often take long periods of time to recover from, so it’s vital that your support for the ill person continues even as they start the road to recovery and adapts with their changing needs. As my Dad said to me recently, “It’s not a sprint, Izz. It’s a marathon.”

Follow Izzie on Twitter: @IzzieRodger