Freedom Day – a perspective

19 July 2021 | Support

On the day that the UK Government lifts enforcement of Covid restrictions across England, Sharon Carter shares her thoughts on the choices we all now have to make. She writes both as a nurse with more than 30 years experience in the NHS and as a brain tumour patient for whom lockdown has not only been about the pandemic.

“Freedom Day” what an emotive, uplifting title for what comes today, on the 19 July 2021.

But did we really lose our freedom? Or were we asked to help those less healthy than ourselves to protect life and the NHS?

I have worked as a nurse in the NHS for 32 years and have been involved in looking after and treating HIV patients in the late 80s and early 90s, as well as patients with Hepatitis C and all manner of infectious diseases, but I never had to deal with anything like the Covid-19 pandemic. But then no one had! Naturally, my nursing knowledge would affect the way I approached the crisis but it was my personal health battle that was to make the biggest impact and changes in the way my family and I have had to live since early March 2020.

Two years ago I was diagnosed with a brain tumour. It’s very rare (intracranial plasma cell granuloma) and currently, I am the only person in the UK that has it deep within the right parietal lobe of the brain, making surgery not an option. This meant at the start of the pandemic I was on the drug Rituximab and later started seven months of chemotherapy which finished this May. Both failed to treat the tumour but did affect my immune system leaving me immunosuppressed and effectively trapped at home – shielding regardless of whether it was legally required or not. The house was on lockdown and that’s how it stayed. Who wants to fight a brain tumour to sustain your life and reduce any disabling effects it can have, only to catch Covid-19? It’s becoming clearer each week the devastating neurological effects Covid can have, without even considering long Covid.

There are 100’s of thousands of people like me living with either immunocompromising conditions or that are immunosuppressed in this country. We all did what we were told and most of us have now been double vaccinated (which I am very grateful for). But the fact remains that due to our medical condition, we do not know how effective our jabs have been and what kind of antibody response we have had. This is something many people don’t have to consider and won’t appreciate. The good news is there are many trials now up and running looking at his very question. So until reliable evidence is reported on for people in my situation I need to continue to keep myself as safe as possible.

From today, 19 July, the wearing of masks will no longer be compulsory. In my opinion, this makes no sense! If you are trying to protect the extremely clinically vulnerable and you don’t know if their jabs have been effective for them, why would you take their main risk reducer away? If you wear a surgical or fabric mask you’re protecting those around you from what you may cough or breathe out. So by allowing people to go inside shops and on public transport without masks, you are reducing protection for anyone clinically vulnerable like me. This is why I will only be wearing a FFP3 mask from now on as they are the only kind of mask that will protect the actual wearer. I will continue to only go out when needed (hospital appointments etc.) or be outside to meet people and will still maintain social distancing. Online shopping will continue in our house. My children will still go to school and university but they will continue to strip off and shower when they come home. We are in a well-practised routine with the things we do due to Covid and I don’t believe in our situation it is the right time to stop them. We have come too far to “cock it up” now.

I am very blessed to have a husband that can continue to limit his visits to the office, and kids that understand the situation and take sensible precautions whilst getting on with their lives. We have a lovely home and garden we can enjoy, but most of all we have each other and we all know that this will end at some point.

We just have to continue to be patient as, like so many others, we have no freedom day or a choice. But what we do have as brain tumour patients is resilience, strength, positivity and Brain Tumour Support when we need them, which will see us through.

At the end of the day, it comes down to our own personal choice as of 19 July. It will be up to us to decide what we do and don’t do, the precautions we take and what we believe are acceptable risks. However, if we want to protect those who are most clinically vulnerable in society understanding the risks that they face needs to be part of that decision-making.

#Covid19 #NHS #braintumour #braincancer #TogetherWeAreStronger #BrainTumourSupport

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