This article is adapted by Dr Jane Clark from an article originally written by Jane and Dr Peter Harvey. See our introduction for a background on this series of articles.
This is one of the most difficult aspects of living with the aftermath of cancer. You will note that the phrase ‘coming to terms with’ uncertainty is not used, because the reality is that this is something to be lived with and managed, not ‘come to terms with’.
For those people not living with this threat, this Sword of Damocles, truly understanding what it feels like is almost impossible. The nearest that we can get to it is to think about that phrase so often used lightly and as banter – ‘See you tomorrow unless I get run over by a bus.’
The difference between those living with the threat of cancer returning and those free from it is that you have seen the bus coming and don’t know how long it will take to reach you and whether it will stop in time. Until you can be given a 100% cast-iron, gold-plated, rock-solid guarantee that your cancer is completely gone, never to return (which can rarely happen), then you will have that nagging worry gnawing away at you.
Again, immediately after cancer treatment finishes, these fears may be at their worst, compounded by the lack of trust in your body and the lack of confidence that you may be feeling. It makes sense that you would feel that way and the reality and power of your feelings need to be acknowledged by all around you, both lay and professional.
As time goes on, you may well find that the terrors inspired by the uncertainty reduce and are sent to the back of your mind rather than residing in its forefront.
However, it may not take much to restore them – clinic visits, milestones and anniversaries, high profile celebrities with cancer – can all serve as potent reminders of what you have been through and may bring everything flooding back with a vengeance. It would be surprising if this were not the case. Your experiences cannot be expunged or erased from your memory banks – they can be made less accessible, less easily revisited, but there they will be.
To use another analogy, if life is like walking along a path by a river. Prior to your cancer diagnosis, you might not really have been aware of the river and felt able to choose the path ahead and felt in control. The diagnosis of cancer is the river level rising and breaking its banks so that your path ahead is flooded, and you cannot go on as planned. For some of you, the path may be flooded for longer than others and all your energy has had to go on dealing with the immediate flood management.
Then as treatment ends, it is as if the flooding recedes, and the river levels return to normal levels. You have to re-build and repair your path in life. But you know the river is still there, sometimes it is louder than others (scan, check-ups) and the threat of flooding feels closer than ever. But sometimes, you can barely hear the river and you can focus on your path ahead.
Learning to live with the uncertainty is like learning to live alongside the river. You can stand and stare at it to check the river levels…but the cost is that you don’t move along your path and really live life. You can try to get as far away from the river as you can but that again can lead you away from your path and like trying to get through thick bush and vegetation, can make life hard work and unpleasant. So, is it possible to live alongside the river, knowing that sometimes, the levels will rise, and it will feel worrying, and at other times, knowing that the levels will drop, and you can enrich your path ahead?
You can try to have some degree of control over the river by attending scans and looking out for signs of recurrence (the same as having an alarm for rising water levels and a plan for if the flood comes again) but also letting go of the idea that the river can be controlled completely. Being able to switch your focus back to your path and doing what matters to you in life.
It would be impossible to simply ‘Put all that behind you and forget about it’ as some of you may have been exhorted to do. If only it were as easy as that. What is often helpful, to balance your understandable pessimistic and frightening thoughts, is to remind yourself of any helpful comments that your doctors and nurses have made. These are constructive alternatives that are not about naively ‘looking on the bright side’ but are real counters to equally real fears.
One of the things that often changes for people with cancer is a loss of future time horizon. Before all this happened, you could think easily about doing things in the future – buying some expensive furniture, a wedding, a special birthday party, a significant wedding anniversary two years hence and planning a holiday.
You think differently now – perhaps the new sofa will outlast you, perhaps you won’t be there to see your daughter married, to join your friends in celebrating their silver wedding. These thoughts are distressing and disturbing as they remind you that you have had a warning about your future.
Those close to you may try to dismiss these fears with a blithe ‘You’ll be alright’ but such glib phrases can be cold comfort if you are imagining a world without you in it. This is the time to remind yourself of the difference between ‘might’ and ‘will’, and to think in terms of hope rather than expectations.
It is not silly to be fearful of the worst outcomes – it would be very odd if you were not. As we have seen one way of managing these very real terrors is to confront them but to counter them with your optimistic ‘mights’ to achieve a sense of balance.
This idea of a sense of balance is important because it reflects the changing nature of your feelings. For most of us, most of the time we are not in a completely emotionally balanced state – there will be times when we feel better or worse, more or less at ease and stable even without all the demands of having come through cancer. Because you may be living with reminders of what you have been through, these are likely to raise fears and concerns, which is hardly surprising. At these times, the noise of the river may be more noticeable, and the fears of flooding may feel more real. But if you think about these as being things that alter your sense of emotional balance, it is possible to re-balance, if not immediately, at least after the worst of the fear has subsided.
It is not unreasonable or silly to be fearful of an upcoming clinic appointment for a check-up. You cannot be certain what will happen, and you have to allow for the possibility that you may have further bad news. But, on the other hand, there is also the possibility that the news may not be bad.
As you gain more distance from the immediacy of the experiences, you hopefully will find that their power to terrify and disturb becomes less potent and powerful and that you are able to draw on your own, new, experiences of better clinic visits and less bad news, for example. These add to the store of ‘good’ experiences that you can remind yourself of to counterbalance the less good ones.
Another way of managing these very real fears is to try to stand back and notice what is happening with your thoughts and physical feelings. All too often, when we get a frightening thought in our mind, it is impossible not to be taken into the story of this thought. We have a story-telling mind which will fill in the blanks with the worst-case scenarios. Suddenly a thought has become a reality and we experience the anxiety and worst-case scenario viscerally. If you can calm your mind (often by breathing slowly and focusing on the out-breath) then you can step back from the thought. Imagine your mind is like the sky and this thought (however terrifyingly real) is a cloud blowing across the sky. Is it possible to step back and notice this cloud? Can you say to yourself, “I’m having the thought that…” or “my mind is telling me the story of…”?
It’s possible to learn or develop this ‘stepping back’ technique using mindfulness exercises. Mindfulness has become trendy and is now seen as a bit of a panacea for all things. But the evidence base for this technique is strong, particularly for managing anxious thoughts. Its particularly helpful as it does not tell you that your thoughts are wrong or silly and does not suggest that they need to be challenged (sometimes this can make thoughts stronger). It gives you a way of relating to the thoughts differently so that you can step back and notice the thoughts and see if you can let them pass on by.
Or relating to the river analogy, noticing when the river is noisier and thoughts about flooding are more in your mind (and perhaps this is more in a dark at 2.00am) and thinking about how you take care of yourself when it feels like that. Then noticing when the thoughts about flooding are less and what has happened to allow your mind to be drawn to other thoughts. Then keeping some focus on your path ahead and what matters to you in life and how your daily actions can keep you in line with what matters. These psychological techniques are from a therapy called Acceptance and Commitment Therapy if you want to explore these ideas further.
Dr Jane Clark, Consultant Clinical Psychologist
The information and content provided in this page is intended for informational and educational purposes only and is not intended to substitute for professional medical advice.
©️ 2023 Jane Clark and Peter Harvey. With quotes from the Ticking off Breast Cancer website creators (now Future Dreams). All rights reserved.
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