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Living and dying with mesothelioma in a pandemic

By Michaela Morris, a client liaison manager at Irwin Mitchell

Since the start of 2020, we’ve all lived with the global threat of COVID-19, with lives and work disrupted and unprecedented levels of grief and loss. We’ve seen extraordinary kindness, a greater sense of proportion, lots of adjustments to work and family life, and increases in anxiety, stress and financial hardship.   

I have the privilege of working with those affected by mesothelioma, more easily known as meso. I hear of the daily impact on individuals and their families as they live with a huge range of fears and emotions.

What is mesothelioma?

Meso is caused by exposure to asbestos, mostly in the workplace. It can take many years, anywhere from 13 to 70, before symptoms show themselves and a diagnosis is made.

From diagnosis to end of life is on average four-18 months, and the language of the internet describes the condition as fatal and aggressive, adding to the distress.

Diagnosis of a life-limiting condition of course brings many unknowns, as well as multiple losses and bereavements in terms of identity, relationships and an uncertain future. Meso can also bring a sense of injustice at being exposed to asbestos, with anger contributing to grief. 

As with any life-limiting diagnosis the unknowns and questions are difficult to process and resolve. How long do I have to live?  Can I beat this? Will I die in pain? What will happen to my partner?

Covid-19 pandemic has elevated worries

With the pandemic limiting the usual social leisure activities and interactions, the volume of such thoughts and worries are elevated.

Some won’t want to discuss their end-of-life choices and preferences, others will over-research and overthink. Some will pre-plan their funeral and have all their affairs in order, some are consumed with anger and injustice, and some will simply focus on the day-to-day things. 

All of these are up and down and exhausting in themselves. And they’ll be exacerbated by living with meso-related pain, shortness of breath, poor sleep and appetite, and high levels of fatigue. 

With meso, shielding for extended periods and the stress of living alone or being isolated from family and friends will naturally intensify the worry and fears about disease progression. I’ve had numerous conversations about how patients might have approached the pandemic differently, in terms of limited life expectancy and what they’ve missed out on.

We’ve mostly taken on board Facetime and Zoom-time with family and friends. But it has taken its toll, and isn’t an adequate substitute for a hug and a shared meal when quality of life and time of life is so key. 

Lung nurses going the extra mile

Pre-pandemic the diagnosis, palliative treatment planning, support groups and access to services would have mostly been face-to-face, and with a clear pathway of support. It’s such a different scenario in the pandemic.

We’ve all seen the extraordinary lengths of personal commitment of key workers and NHS staff risking their own health and wellbeing to care for those affected by Covid and other conditions. The specialist lung nurses have played a key part in this, going much further than the extra mile with limited resources and with huge impact. 

Those living with meso appreciate the enormous pressure staff are under. Nevertheless, the remote access to services and the frustrations of trying to get support has been really stressful. Many of those living with meso are the generation that only call a nurse or doctor if they have worsening or new physical symptoms. As a result, the impact of the disease on their lives and their psychosocial needs can be missed.

People still need to be listened to

People’s perception is that they aren’t being heard, that the ‘watching and waiting’ is more of a waiting, and they can feel abandoned. Many have received their diagnosis over the phone, and haven’t felt able to digest the information, or given time to ask questions after the initial shock.  

They understand the pressures, but two years on, their patience is wearing thin and they’re losing trust. Many are struggling and aren’t sure who to go to. Others simply don’t feel able to admit they’re struggling, or what help to ask for and where to seek it. The psychological pain, the social context and the fears aren’t being seen or addressed in so many cases. 

For those living with meso or a chronic condition or other malignancies, there’s natural fear of infection that might exacerbate their symptoms or progression. There’s also concern that infection could delay treatment, such as chemotherapy.

This has exponentially increased in the pandemic. The data on late diagnoses, non-reporting and the years it’ll take to deal with the backlog adds to their worry. 

Nearly half of those living with meso, about 2,500 cases per year, are over 75, and the majority are male. Many of them are carers for their partner or a family member, might have other health conditions, and during the pandemic have been shielding.

These common situations contribute to the distress in dealing with loss and change:

  • Delays in diagnosis
  • Reduced access to face-to-face appointments
  • Delays in investigations and treatments and accessing benefits
  • Seeking compensation.

Crisis in health and social care needs addressing

Before the pandemic, palliative care, specialist nurse teams and district nurses were severely stretched, with demand above capacity. There has been much reporting of tragic situations where things have been missed during Covid for adults and children. There have also been reports about the impact on waiting lists for cancer treatments and surgeries, and increased deaths by suicide.

Demand being much greater than capacity was an issue pre-pandemic, but now is in the spotlight in a more dramatic and urgent way. I hope this focuses the attentions of policymakers and budget-holders to address the crisis in our health and social care systems.

Meso community continues to offer help and support

But, and it’s a big but, the meso community continue to fundraise for meso charities and support each other. They tell tales of their grandchildren, report on what’s growing well in their gardens, and share their feelings and humour with generosity. 

Let’s continue to encourage and enable people to access appropriate services, listen to their fears, and support them to live well and to die well.   

Michaela Morris is an associate client liaison manager at Irwin Mitchell. She is an occupational therapist, and previously worked in three hospices and in mental and physical health settings.

Find out more about our client liaison team. 

Find out more about Irwin Mitchell's expertise in supporting people and their families affected by meso at our dedicated mesothelioma section.

Demand being much greater than capacity was an issue pre-pandemic, but now is in the spotlight in a more dramatic and urgent way. I hope this focuses the attentions of policymakers and budget-holders to address the crisis in our health and social care systems.”