Guest blog: Locked down and not out

Guest blog: Locked down and not out

There is no gate, no lock, no bolt that you can set upon the freedom of my mind.” Virginia Woolf

This week, Miranda talks about the impact of lockdown upon the life of a stage 4 cancer patient, although the sentiment applies equally to anyone in a “vulnerable” position.

One of the most popular social media tags that those with secondary cancer use is #busylivingwithmets. On week five of COVID 19 lockdown I’m amending this to #notbusylivingmets or rather more hopefully #stilllivingwithmets. All the brilliant attractions of everyday life: work, friends, parties, daytrips and holidays, have been closed down, shut down and paused. For me as someone with cancer there is a structural problem with this. All those activities, whilst motivating and delightful in themselves, also served a second purpose: they distracted me from the reality of my medical status, they occupied me and allowed me to forget.

So now those things are on pause and I am confronted with myself, without the carefully constructed life around it. We are all now faced with the question of identity in a new and stark way. We may have thought about identity before from an emotional, developmental or spiritual perspective, but this time particularly for those not working, the question of who we really are is in our face, unavoidable, no longer hidden behind work or relationships, power or money or image. And for those living with a long term illness, particularly if it qualifies them for a government shielding letter, it becomes ever more challenging to stop our identity becoming our illness. All the new structures are actually predicated on that illness. I can’t go out because I have cancer (or severe asthma or diabetes or whatever). I qualify for shopping deliveries because I have cancer. My household has to be careful because I have cancer, I can’t even share a bed with my partner. It’s easy to see also how we might choose to ignore government advice. After all, further limiting the life already limited, seems unjust and unfair, perhaps even ridiculous. Added to this is another real fear that my treatment or future treatment might be affected by the pressure COVID places on the NHS.

What then to do? I have no real answers and truth be told some days I feel flat and sad. Sometimes I am very bored, sometimes very irritated at the situation, sometimes very passive and sometimes overactive to the extent of jogging around the kitchen island to increase the number of steps recorded on my fitbit.

Over these last weeks, things have been consistently a bit better when I have:

• Exercised – first thing in the morning: Online yoga followed by a simple circuit and time on the static bike or a skipping rope. I am fortunate to be well enough to do this. This makes me feel brighter, it makes me appreciate what my body can do. It also is another strategy to reduce my risk of getting seriously ill with COVID and leaves me better able to cope with cancer.
• Connected – with someone, friend or family using a video app with a cup of tea or a glass of wine. There is comfort in the dear familiar faces who know me for who I am not just as a government statistic.
• Been normal – got dressed, eaten normal food at normal times, done the usual household chores just perhaps with a little more time and a little more care and direction
• Learned – It has been fun to do some online courses, learn some new recipes, knitting stitches, read some books I wouldn’t have opened before. Creating my own mental stimulation is a discipline but worth it!

It’s freeing to realise that everyone else is also trying to do these things. Cancer or no cancer these are the things that help me be more me. I have never been someone who has liked my own company or been very peaceful and reflective, but I am trying to put less pressure on myself to be a superhuman and taking more time to enjoy small things.

This is really hard, but it will change, nothing stays the same. I am looking forward to parties and holidays, going to the pub and walking on the beach. I hope I’ll be more sure of who I am at the end of this and the distractions and diversions I constructed before all of this, will be put back in place only if I actually want them to be there!

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