Dealing with uncertainty

Diagnosis with a life-threatening illness

When you are diagnosed with a life-threatening illness, you’re plunged into a world of uncertainty: will I get better? Will I be able to keep working? How is my family going to cope? Can I ever go away, or must I always stay close to the hospital, just in case?

You may be worried about becoming weaker, maybe because of the illness itself, or, perhaps because the treatment you’re receiving is very debilitating. You may be upset about changes in your body like increased weight or losing your hair, and wondering whether you will ever get back to ‘normal’.

Anxiety and worry

Sometimes the periods of greatest anxiety come when you least expect them. Allie Moon was diagnosed with breast cancer in July 2015 at the age of 38. She expected to feel relieved when she finished her treatment six months later, but instead she started to worry about whether it had worked.

Allie says: “I thought I’d be jumping with joy having got through all the months of surgeries, toxic chemical infusions and radiation, yet I felt more scared than I had during treatment.

“I worried that because my periods didn’t stop after chemo and I didn’t completely lose my hair, whether the chemotherapy had been effective. I know that it is in the first two years after treatment that it is most likely to come back and I’m not sure that worry will ever leave me.”

Ending uncertainty

To make matters worse, during a routine MRI scan, doctors found a lump on her lung that they feared could be cancerous. It was, she says “a completely horrendous and troubling time”. To end the uncertainty, she opted to have the lump removed and was relieved to find it was a cyst and nothing to worry about.

Allie writes about her experience with breast cancer on her blog. Read more.

How uncertainty affects us all

Of course, there is a basic uncertainty in the life of everyone. The Dominican writer and preacher Fr Timothy Radcliffe says this uncertainty “suddenly came to the foreground and jumped up and down in front of me” when he was diagnosed with cancer of the mouth. After he first felt a lump, he found himself sitting in a series of waiting rooms worrying whether he was about to receive bad news.

He has had two operations and is waiting to hear whether he will need chemotherapy or radiotherapy. Yet even as he worries about losing his hair or his teeth, he is finding grace in uncertainty.

Finding grace in uncertainty

He says: “The other day, I had an intense experience of hovering over nothingness, and that my life was precarious, a gift on which I have no hold. This did not make me afraid.

“I do believe in eternal life and that the Lord’s hands cradle me. It was more the sadness of which the American novelist William Maxwell speaks: ‘But I don’t want to leave the party’.”

Ways to cope

Timothy is expressing his trust in God and acceptance of whatever the future holds. He believes we get a glimpse of eternal life when we enjoy life to the full.

This is also something that Allie Moon is trying to do. She is looking to work less to give her more time “to stop and smell the roses”. She has also been learning the guitar and started a blog after she was diagnosed which she finds therapeutic.

Sharing thoughts and ideas

Writing blogs and exchanging thoughts on social media can be a rewarding way of tapping into a community of people in similar circumstances. A diagnosis of serious illness can be very isolating when you look around and see people getting on with their everyday lives.

Another problem may arise if you struggle to understand some of the medical jargon or forget to ask a vital question at a meeting with your doctor. You may find it helpful if a palliative care worker can help you to prepare by writing out your questions in advance, and then attend the meeting with you to note the answers.

Thinking about the bigger picture

There can, however, be instances where social care professionals themselves contribute to uncertainty about a very sick patient’s care by being too risk averse according to Dr Adrian Treloar, a consultant in old age psychiatry at Oxleas NHS Foundation Trust in south London and Kent.

“I had a case where a woman was doing badly in a nursing home and her husband wanted to take her back home to live with him and his family. Full 24-hour care at home was being arranged.

“A social worker rang, very worried that if she was allowed home she might die.

“The reply was, of course, that she is dying and that she may well be better and more comforted at home with her family. Taking that risk worked, and she died well at home surrounded by her family some months later.”

Challenges

Dr Treloar is also aware of the challenges that come with the ability to diagnose conditions such as dementia early.

“Alongside the opportunities that come with early diagnosis, people do, at times, struggle to cope with the fear and anxiety that can come with it. The fears people have can take real chunks of life away from them.”

‘Do not worry about tomorrow…’

Rather, Dr Treloar quotes Matthew’s gospel: “So do not worry about tomorrow, for tomorrow will bring worries of its own. Today’s trouble is enough for today.” (Matthew 6:34)

This was the approach taken by Bernardine Bishop, a psychotherapist from north London. After treatment for colon cancer, she spent four years in what she called “happy uncertainty”.¹

A  legacy of hope

She wrote three critically acclaimed novels including one that drew on her experience of cancer. Her illness returned and she died in 2013 but her novels are a legacy of hope.