Reliving leukaemia and isolation - and what I've learned from experience.
This story was written when people with blood cancer were shielding across the UK. For up-to-date information on current restrictions and guidance during the coronavirus pandemic, see our information on staying safe and government guidance.
For many of us, this is an incredibly difficult time. Concerns for our health, a lack of control, and no longer being able to do the things we love with the people we love. But these experiences are all too familiar for someone like me, who underwent a stem cell transplant to treat acute lymphoblastic leukaemia (ALL).
At the age of 18, I spent 15 weeks in hospital where I received high doses of chemotherapy and total body radiotherapy. Because of a weakened immune system, I was stuck in a room without my family, friends, and fresh air (I even missed Christmas!). I’m not going to lie it was the most difficult year of my life.
The isolation caused by the coronavirus pandemic echoes back to my time as a patient. I am once again incredibly bored without a real sense of purpose or control. But this time the entire country is going through this with me.
Now I’m not saying being stuck inside for a few weeks is the same as being a cancer patient. I’m not constantly nauseous or tired, I’m not attached to wires and pumps, and I’m not getting woken up by nurses every four hours to check my blood pressure and take my blood. But the two are similar. I miss my friends, I miss being busy, and I’m more bored than ever now.
I learnt a lot of things throughout my treatment which are helping me navigate self isolating. And maybe they can help you too.
Having a routine is important
I try and do specific things at different times of the day. Work in the morning, reading in the early afternoon, calling my friends and watching a film in the evening. It makes me feel more in control and less bored. As a patient I recognise the importance of trying to keep as many things normal as possible.
Look after yourself
Make sure you get up and go to bed at reasonable times. Get dressed instead of spending days on end in your pyjamas! Eat and drink as healthily as you can. And moving is so important. Something that I learnt as a cancer patient is how fatigue and tiredness are so different. Many of us feel ‘tired’ at the moment when really we are just fatigued, and exercising helps so much. I remember one time a nurse walking me and my IV stand back and forth in my hospital room and just by moving a little I felt so much better. You could try some exercise videos to do at home.
Connect to others digitally
I’m an extrovert and I'm really struggling at the moment, like many people are. I’ve learnt that most of my hobbies involve ‘pubs, clubs, and non-essential businesses’. When I felt sad in hospital, calling my friends or even messaging them made me feel so much better. I think it’s so easy to have a low mood and to isolate even further but trust me it’s a bad idea!
Do something... or don’t!
A whole lot of time with very little to do. You are going to become very well acquainted with yourself! Spend time doing things that you don’t normally get to do. Read, cook, create something, spend more time with your family.
But it’s also important to remember not to put pressure on yourself to accomplish anything extraordinary. Just looking after yourself is enough. People would come up to me after being in hospital and ask me if I’d done anything like learn a language or an instrument, and I felt so bad that I hadn’t, which was silly. I could’ve died and I was judging myself for not learning mandarin or the ukulele!
Perhaps one of the biggest lessons I learnt from being a cancer patient is that bad things can happen to you, but the extent to which they affect your mood is controllable. In hospital all of the patients were going through very similar things yet the ways we were all affected were so different. I think doing things like meditating, being introspective, and practicing gratitude can make you become more self-aware of your mood and help you to recognise when you’re feeling down, so that you can do something about it to feel better. You could try some relaxation and mindfulness exercises.
Whether it’s cancer treatment or isolating from a pandemic, we have to remember that things are temporary. Everything will get better and we’ll be doing the things we love to do with the people we love before we know it!
Talk to other people affected by blood cancer
Hear from and connect with people who understand.