Diane's Story

I have read many articles about the effects COVID-19 is having on people. There are quite a few very common themes and experiences which are common to many:

  • Anxiety
  • Fear
  • Depression
  • Agitation
  • Anger
  • Sudden loss of predictability
  • Fear about the future
  • Loss of income/employment
  • Loss of hope

I’m sure you recognise them all - if not in yourself, then likely in your friends and family.

Because of COVID-19, you are now experiencing firsthand the uncertainty that comes with finding that your future is almost completely now determined by something which was unforeseeable and unexpected. Furthermore, the predictability of your future now relies on something you can’t really influence, and in some cases maybe even understand. There are mixed messages about your health - your future health, and ways to protect it.

There is a group of people in society who have experienced all of these emotions, some for many years - well before our lives were turned upside down by COVID-19. They are people who have a cancer diagnosis - in particular those whose diagnosis is terminal. I would never presume to speak for all people in this situation, but I can speak for myself.

I have an inoperable brain tumour and this diagnosis means my condition is terminal. Maybe not in the immediate short term, but in the not too distant future. Hence begins the parallel journey you might have found yourself on with COVID-19.

As is common with brain tumours I went to bed one night as one person, and woke up in a new universe. A seizure during the night was quickly determined to have been caused by a ‘lesion’ on the brain. One day I was a healthy fit, active, working 56-year-old and the very next day I was not. You might recognise this feeling of shock and disbelief from your experience with the declaration of the pandemic and subsequent lockdowns. All of my expectations for my future, and that of my family, were not only in question but no-one knew the answers.

My immediate reaction was very much anger, closely followed by sadness. My future plan was disrupted and this has shock waves through your immediate family. The questions begin - why is this happening to me? How long will I live - what should I do with that time? Will I ever work again? It is easy to see how depression is rampant in people suffering from life-limiting diagnoses.

The consequence of the pandemic saw many suddenly lose their jobs, and with their jobs their sense of self and worth. For many support was at hand - both financially and emotionally, as massive planning was undertaken to assist those in need. This is not always the case for cancer patients - especially those with rare tumours - I lost my business, it was quietly closed and I disappeared from view - very much out of sight out of mind - except for those closest to me. There is very little in the way of safety net for those in my situation.

Similarly, the experience of social distancing and isolation and the risk of infection are common experiences for cancer patients. Having undertaken 15 rounds of chemotherapy leaving me immune suppressed, I have become adept at avoiding crowds, keeping distance from people, and often simply not leaving home for weeks but for medical appointments. Such is the risk of infection, during chemotherapy I take prophylactic antibiotics concurrently.

Facing a test for COVID-19 fills the public with dread - the intrusiveness of the test itself, coupled with the wait for the result. Will I be positive, negative - what will this mean for me - for my family? How will I cope with the disease - will mine be a mild case or life and death case?? With an inoperable tumour I undergo 3 monthly MRI scans, to check for changes. This scan would be unbearable for those suffering claustrophobia - luckily something I am not. A term has been coined for those with regular scans scheduled to check cancer - scanxiety. It is a very real phenomenon. For days before the scan one imagines every change in sensation, tingle, headache, fatigue might well be related to growth or progression of the tumour. The days after awaiting the result are a whirlwind of emotions - what-ifs - will I need surgery, are there any more treatments available - could this be the end?

We all hope for a cure or vaccine for COVID-19. Understandably there are huge resources being poured into this effort and this is highly likely to occur. But whilst you wait - your life is on hold - your future is uncertain - cancer patients endure this daily. Learning to live with uncertainty is their new normal.

People with rare cancers such as mine learn very quickly on their journey, that the resources are just not being funnelled into treatments, let alone cures. Treatments for brain cancers have not substantially changed in 20 years, apart from the introduction of one new chemotherapy drug. Life expectancy has not changed in 30 years. Conversely, prostate and breast cancer survival rates have dramatically improved. Brain cancer costs more person than any other cancer - yet only receives a small fraction of government research funding - less than 5%.

This week is brain tumour awareness week - Saturday, 24th October 2020 to Saturday 31st October 2020. While lockdowns slowly come to an end and life returns to COVID normal for most spare a thought for those with rare/terminal cancers for who life with never return to normal and the isolation and anxiety continues. For support and referral call 1800 857 221.