After the treatment finishes then what? (Dr Peter Harvey)
22 Living with uncertainty
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 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, then you will have that nagging worry gnawing away at you.
Again, immediately after 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.
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.
Imagining the future
We noted Alan Bennett’s comment earlier about the ‘..collapse of any imaginable future..’ and the problems of looking ahead to plan a holiday.
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.
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 the 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. 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 (see Managing the fears).
As you gain more distance from the immediacy of the experiences, you 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.
The Cancer Counselling Trust has now closed.
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