Shielding: a patient’s experience

Nick York is our Patient Advocacy Healthcare Liaison Officer and a chronic lymphocytic leukaemia (CLL) patient. Here, he talks about his experience of shielding himself from coronavirus so far.

It was in January my ears were first pricked to news of a virus crossing the barrier between animal and man, a breakout in a distant country. Even then I think that my heightened radar was watching for potential future risk of opportune infection. Living with blood cancer and an impaired immunity adds this colour to my life; I am not alone with these fears. Learning how to live with them, balance them and mitigate risk is part of a blood cancer diagnosis and treatment. Adopting hygiene and distancing strategies are a part of daily life to avoid unnecessary exposure to a pathogen or an unwell person. Winter was just coming to an end and so too was the period of annual increased risk – I was about to relax a little.

What if? No, surely not? Thinking back, I wonder how many other immune compromised people were imagining their worst nightmare and anticipating next steps while listening to national safety advice as the coronavirus arrived in the UK. We could all follow what was happening in other countries – absolutely heart-breaking and very frightening – and it was a little akin to being diagnosed again. But this time it was a mass diagnosis.

On 12th March, the government announced it was moving out of the contain phase of their strategy to stop the spread and were moving into a delay phase. Part of that was, “In the coming weeks, we will be introducing further social distancing measures for older and vulnerable people, asking them to self-isolate regardless of symptoms.”

Winter was not over; another was about to start. It was time to try to make sure my medications and vaccinations were up to date, ensure a supply of food was in the freezer and there would be necessary essentials. I recall early trips to shops alone, I could feel the building urgency, the growing fear, followed by a strong feeling that it would not be long before the panic would set in – time to get out before the crowds arrived. Then it happened; the window was closing ahead of time. On 16th March, the prime minister announced in a public statement; “in a few days’ time – by this coming weekend – it will be necessary to go further and to ensure that those with the most serious health conditions are largely shielded from social contact for around 12 weeks.”

Everything has moved and changed so quickly, and life has been dramatically altered for all of us. The entire country is in ‘lockdown’ and the nation is united to help reduce the rate of spread to protect the vulnerable and the healthcare system. If you are living with a blood cancer you are “shielding” and are being shielded.

Shielding – two weeks in

I guess at this very moment I am reflecting on the enormity of all this and the huge personal sacrifice by so many to help the vulnerable and save lives. My heart now goes out to families losing loved ones here at home in the UK, especially to those unable to spend last moments together, and to the health workers and key workers who are on the frontline putting themselves and their families at risk. For me, being isolated to protect my own health is no hardship by comparison. When I think of this, it makes the daily challenges and uncertainty doable, for it will one day end.

The truth is at a personal level I have been here before and have practiced some social distancing strategies for a long time. I recall that two and a half years ago I reacted badly to chemo immunotherapy treatment, and was extremely vulnerable to infection. Treatment had to be shortened as it was making me too vulnerable and I ended up in hospital with breakthrough infections on a few occasions. Treatment meant spending a lot of time isolated from friends and family and unable to fend for myself and needing to rely on others for supplies and my safety.

I see so many familiar similarities at this moment in time. Good hygiene and food handling were critical to keep me out of the hospital during treatment. Following recovery, an already suppressed immune system was further compromised by the effects of the treatments and the disease. So, hygiene strategies, hand washing, avoidance of potential infection and sick people is routine.

Treatment and diagnosis have shown me that my biggest fears are able to be overcome. The pandemic is now here, and this is real, but it will pass.

We can cope, we can adjust. My experience living as an immune compromised person has left me believing blood cancer patients and their families under the same roof may be more able to cope with this necessary physical isolation and the uncertainties and complications the pandemic will cause than they may first believe.

One of the most important resources we have is our experience; we can draw on this to help each other and those not familiar to help them cope with what is being thrown at us all at this moment. Information is key to this. Do not be afraid to reach out to others: government information and support resources, patient groups, your local community and to support charities. We may be physically isolated, but we are not socially disconnected.

Stay connected with your family and friends and take the time to help someone if you can. Exercise your body and mind. Use this solitary time productively. Be nice to yourself too. I have no excuses now to not get on with tasks I have put off for so long. A spring clean, some redecorating and to paint that picture I have been meaning to paint for so long. Who knows, I may even have time to read a book. Gulp.

Stay safe, stay connected.

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