“All-clear” is a Work in Progress

At Carina, we’re currently working on a project to provide a version of our Rezl app to deliver support to people diagnosed with cancer.  It will be a mix of psychological support and mindfulness – tools to deal with the “emotional roller-coaster” – and also detailed practical advice and suggestions.  I mention this work because as we have started to investigate and develop our ideas there have been a number of learnings that, for me, were unexpected.

Of course we could see that receiving a diagnosis of cancer is traumatic. Patients tell us that when they are given a diagnosis of some kind of cancer they experience many strong emotions. Many patients say that they feel overwhelmed … that they feel “it is not real” or that they are “unable to take anything in”.  Such reactions are very common and are normal. Each year 360,000 people in UK are diagnosed with Cancer – and almost all of these patients will experience some fear, disbelief, anger and anxiety …for themselves and for the impact on those close to them.

  • Patients describe the diagnosis as “the worst news imaginable“; that they feel shock, numbness, and feel “it’s not fair”, “why me?” or “I am doomed”; they feel blame; regret; guilt; and make comments such as “it’s inside me?”,  “What if it spreads?” and “ I want it out now”.
  • Patients express fears: of death, and its consequences for loved ones, pain, therapy, how will loved ones cope?…of being a source of upset or a burden.
  • Patients are anxious – impact on family, finances, pain, nausea, hospitals; surgery, loss of function, hair, loss of control, and being unable to tell people without losing control of emotions.

This is traumatic. Yet I was surprised to discover that more patients are referred for psychological support at the end of their treatment than at the start.  It may be that the process of moving quickly from diagnosis to the treatment phase brings many challenges and the need for practical adjustments so that a patient can be scooped along – obscuring any emotional issues.  Yet “the end of treatment” clearly brings significant challenges for patients – and there is often a lot of free time to become low or anxious about the future.

So when someone being treated for cancer gets the “all clear” their family and friends will be relieved… and usually celebrating – yet the patient may not feel that way.  They are often living with the effects of surgery or the longer-term impact of their therapy…  including “chemo-brain”. They may feel exhausted; they may miss the routine of their treatment and even experience “separation anxiety” on being parted from their treatment team.  They may feel alone – and under pressure to return to their “old life”.  They may experience “adjustment disorder” and struggle with anxiety and or depression.

So what can help people in this situation? – well insight, normalisation (an understanding that these feeling are to be expected  and common…) and the knowledge that time and space are required to adjust – it is not about returning to their “old life” but it’s about becoming comfortable with their new life and the person that they have become.

It’s a transition. .. and it will take time to adjust… emotionally and physically.  We are all changed by our experiences… a little every day …but especially by major events.

Patients may find that they have become more introspective… or see the world as a less certain place: revising values… beliefs… priorities … or reactions … perhaps deciding to change their lifestyle and the things they wish to focus up on.  Some may have been decisive previously but may now become more empathetic; while others may become more assertive or less patient …. or even experience a change in their level of self-confidence.

A mindful approach would be to become more aware of when they behave as before or when they seem to behave or react differently from their old self… so that they can decide on the reactions that they feel most appropriate for how they feel… now. Recording these observations, of different feelings and reactions, will help them understand the way that they have been changed by their experience.

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