Being a vulnerable person in the coronavirus crisis: Ali’s Story

Written by: Issy Smith
Published On: 25 Mar 2020

Ali's StoryThe pandemic that the world is now facing is causing a lot of confusion and fear among many, especially those of us who have a compromised immune system.

I am very grateful to have lived 12 years since my diagnosis of pancreatic cancer and, as every year passes, that awful and frightening diagnosis feels ever more distant and as time goes on it is thought that when I eventually die, that it will be of something else.

Will it be coronavirus? Well, I just don’t know.

When it started

It was the beginning of March that we had a team meeting at Pancreatic Cancer Action about the coronavirus and how we can protect our staff.

As I had had my spleen removed as part of my treatment for pancreatic cancer in 2007, my immune system is not as great as it could be. In fact, I have to have regular immunisations to protect me from diseases such as pneumonia and meningitis and the regular flu. I also find it harder to shift infections when I get them, often needing antibiotics to help me.

Symptoms

I had arrived at work with a sore throat and was feeling not so great so, as a precaution I called NHS 111 to see if they had any advice for people living without a spleen, as we are part of a group of people with pre-existing medical conditions who are at higher risk of having complications from contracting the coronavirus. I was told to keep an eye on symptoms and to call back if worried.

The next day I really felt ill with a fever over 38o, my sore throat had got worse and I started to get a dry cough. For the next few days I was in bed, unable to control the fever properly with paracetamol. The shivers and night sweats were unbearable and disturbed my sleep. The cough was getting worse.

On Monday 9th March, 5 days after my initial symptoms, I felt worse than ever. I felt I needed to see a GP, but in order to get an appointment, I had to go through the NHS 111 system first. I called but had a 30-minute wait until I got someone (who was really helpful) on the line. They concluded that as I had not been to any of the listed coronavirus locations recently and I didn’t know anyone who had contracted the disease, that it was likely I didn’t have the virus.

Medical advice

That afternoon I went along to see my GP. Aside from not having a spleen, I am also insulin dependent diabetic and for the past couple of days, my blood glucose levels were more erratic than usual (I have type 3C diabetes which is difficult to manage) and my blood pressure was through the roof. All this with a high fever and cough which was not going away. My GP was concerned and referred me to the Ambulatory Emergency Care (AEC) Unit at the Royal Surrey County Hospital in Guildford. While I waited for my husband to arrive at the GP surgery to pick me up, my GP had put me into an emergency room in the practice and she and members of the nursing staff kindly kept popping by to ensure I was OK.

When we got to the AEC I was registered quickly and seen by nurses who proceeded to take blood and urine samples along with temperature and blood pressure readings.

Once the consultant arrived, they then decided to test me for flu, and I was given a face mask.

I was admitted to a ward initially but was eventually allowed to go home.

Did I have it?

All this time I have wondered if I have actually had COVID-19 as I wasn’t tested for it but have had similar symptoms. I am now beginning to recover but it has taken a while and even now, my energy levels are on the floor.

If I haven’t had COVID-19, then I am still at risk of catching it. And, as someone who has diabetes and a compromised immunity due to a lack of spleen, I am at greater risk than the ‘normal’ population for developing complications and, dare I say it, die.

The world’s population has gone into panic mode with the worry that they may catch the virus. For the majority of fit and well people, they will recover from it eventually, but for people like me and other vulnerable people, the fear is very real indeed. And I have to admit, it is scary.

Advice

However, the advice is (and what I am doing) to self-distance from other people – the Pancreatic Cancer Action website has good information on how you do this, including:

  • Avoiding contact with anyone with symptoms of coronavirus
  • Avoid public transport and only travel when necessary
  • Work from home wherever possible
  • Avoid gatherings and visiting busy places
  • Avoid face to face contact with friends and family
  • Use telephone and online services to contact your GP or any other essential services
  • Use online services or ask family, friends or neighbours to support with food shopping, medicines and other tasks

Also it is important to heed the Public Health England advice on hygiene including regularly washing hands for more than 20 seconds and the use of hand sanitisers when soap is not available.

Reality hit

Until now, I haven’t felt like a vulnerable person. I’ve carried on with life as normal, often without a thought to my own health while I try to support others who have been affected by pancreatic cancer. With the coronavirus outbreak that vulnerability is now very real indeed and is ever present.

My way of going about life has turned on a sixpence as it has for millions of us across the UK. Many talk about the elderly being more at risk, but for those of us who are ‘younger’ and don’t outwardly look vulnerable are at an increased risk and we are reliant on others to help us avoid being infected. 

So, if we do the right thing by ourselves and others, by distancing and increased hygiene measures, we will reduce the risk for those of us more vulnerable than others.

My experience with the NHS in Surrey and West Sussex has been phenomenal, but I had to go to hospital before the pandemic was formally announced and our system was able to cope with people like me.

I am very concerned that if I do contract the virus, I will need an ICU bed and a ventilator – which I have now heard we do not have enough of. However, the government has made a plea for manufacturers to help to produce more supplies which is promising.

Stay safe people and please visit the Pancreatic Cancer Action website if you are a current patient or, like me a former one who needs advice and guidance about how to avoid COVID-19.