Kaleb: My hospital visit during coronavirus for a brain tumour MRI and check-up

In June, Kaleb from our Youth Advisory Group shared this fantastic blog on his experience of visiting hospital for a brain tumour MRI and check-up during the coronavirus pandemic, and his advice if you’re anxious about a hospital visit of your own.

Kaleb holding a radiotherapy mask

Silent streets and voiceless corridors, noiseless car parks and wordless foyers. The coronavirus outbreak and lockdown have muted much of our urban world, freeze-framing once bubbling buildings on empty.

In few places is this abrupt silencing more noticeable than in certain areas of hospitals – of course, this stillness applies only to these ‘certain areas’, because NHS staff are, as ever, working tirelessly to help those needing care and requiring hospital stays. Walking into the hospital foyer, usually a place of effervescent activity, you’re met with near-noiselessness: long coffee shop queues substituted for empty space, clustered families swapped for lines of sanitizer dispensers, and the enveloping chatter vanished in place of a low, soft mutter from the few staff and visitors in the hall.

These changes and more mean that, for anyone, a lockdown hospital visit is disconcerting. Recognising this, along with any emotions brought up, can be immensely valuable. It’s fine to feel scared, anxious, worried, or frustrated; feeling none or any of these emotions and more are valid responses to the situation.

It’s equally important to recognise that hospitals are rapidly adapting to ensure patients’ visits are as smooth and safe as possible; the surreal silence of many hospitals is a poignant demonstration of the effectiveness of the adaptations which allow social distancing.

Watch and wait during coronavirus

I’m currently on ‘watch and wait’, following proton-beam therapy earlier this year to stop growth of my brain tumour. ‘Watch and wait’ is a necessary, albeit unsettling, strategy used for monitoring conditions which may not need (further) treatment but could require it. With regular scanning (watching), my clinicians can observe my brain tumour and decide if treatment is needed.

These scans, along with ophthalmology consultations and blood tests for side-effects of my proton-beam treatment, mean I’ve had to visit my local hospital and a pop-up blood clinic during lockdown. I’ll try to give an overview of my experiences in each of these settings, in the hope of giving an impression of my experience of a lockdown scan, consultation, and blood test.

Visiting hospital for an MRI scan

Navigating my way to the MRI waiting room in late April, normally bustling corridors were deserted and waiting areas once crowded with visitors were empty. Being more familiar with busy hospital scenes, this was disconcerting, but simultaneously reassuring because of the evident implementation of social distancing measures.

Seats in the waiting area were clearly marked to ensure patients sat separately, albeit not quite 2m apart, and new procedures meant that I had to wait for a masked nurse to ask me questions about coronavirus symptoms before I could reach the next (of several) waiting rooms. My Dad, who accompanied me to the scan, wasn’t allowed into the last waiting area, so I’m finding it useful to be aware I might have another long solo wait before my next scan.

Once in the MRI room, I had to wear a hospital gown – the iconic and wonderfully airy patient garment – to reduce risk of transmissions of coronavirus via surfaces. The radiographers were masked also, but, despite all the changes to hospital procedures they were, as ever, kind and patient throughout the scan, making sure to explain what was happening. After my scan, as a professed food worshipper, I happily made use of the still-open hospital shop to stock up on a restorative packet of tortilla crisps!

As is happening for lots of people, I received my MRI results by phone. This, too, can be disconcerting, particularly if the call with the results has no scheduled time. Whilst waiting for the call, I found it really helpful to do some relaxing activities, and, during the call with my oncologist, it was helpful to ask her to go over anything I hadn’t understood the first time, especially because receiving results via phone can feel very different to a face-to-face consultation.

Visiting hospital for an ophthalmology check-up

My visit to the ophthalmologist had much the same oddness as my MRI. This time, sat in the waiting room with my parents, we all had to wear face masks and ensure we were distanced from other patients. The stillness of the waiting room setting was bizarre, but, at the same time offered some welcome peacefulness in the wait for my consultation. In the meeting itself we were socially distanced, but, aside from the all-essential 2m rule, the consultation went in a typical fashion and my ophthalmologist was extremely helpful.

Getting a blood test during lockdown

For my blood test I attended a ‘satellite clinic’ in an empty city centre shop, rather than the hospital. I’ll admit that I was rather excited about this, because, taking place at the height of lockdown, going to the city centre was the furthest I’d travelled since restrictions were implemented! My blood test experience was much like going to the hospital, with nurses on duty and clinical equipment set up in the shop. The nurses were efficient, kind, and fantastic, making the visit as easy as it could have been.

My advice on visiting hospital during coronavirus and social distancing

For any lockdown hospital visit, I think it can be really helpful to remember a few of these things:

  • Check the appointment letter and hospital website before you go. These may contain useful information about adjustments made for lockdown. It can be helpful to know what to expect and you may have to contact the hospital before your appointment to answer some coronavirus symptom questions.
  • Plan your travel before the day of your appointment. If you’re taking public transport, make sure to plan a route where all the buses or trains are running; if you’re driving check online to see which car parks are open (some are closed over lockdown).
  • If you want to, take a member of your household with you. Hospital appointments can be emotionally difficult and having a second pair of ears in an appointment can be really helpful. It’s worth being aware that whoever’s coming with you might not be able to come into an appointment, however, because of social distancing measures.
  • If you’re finding something difficult or need any help speak to a member of hospital staff.

Hospitals have carefully planned social distancing measures and are doing amazing work to keep patients safe. Nonetheless, visiting hospital during coronavirus and lockdown is an odd experience and one which it’s completely valid to find difficult or disconcerting. Any emotions the experience brings are valid and sharing concerns with hospital staff is the best way to help. Together, by supporting one another and sharing our experiences we’ll get through this!