When treatment ends – By Dr. Peter Harvey


Some very useful insights here, hope it is helpful

After the Treatment Finishes – Then What?
Dr Peter Harvey
Consultant Clinical Psychologist
Leeds Teaching Hospitals Trust
Imagine a roller-coaster. Some of you will find this an exciting and thrilling image:
others of you – like me – will find it terrifying and beyond belief that anyone in their
right mind would willingly subject themselves to the torment of being transported at
high speed and with great discomfort in this manner. However, I have chosen this
image to represent the process of the diagnosis and treatment of cancer. On a rollercoaster, you will be strapped in and sent of into the terror, knowing that there is
nothing you can do about it until you emerge, wobbly and battered at the other end.
You manage by getting you head down and dealing with it as best you can at the
time. It is only afterwards, when you are on solid ground again, that you can look
back with amazement and view what you have experienced and marvel at your
courage.
This seems to be an analogy for what happens after diagnosis and during treatment.
The end of the ride is equivalent to the end of treatment. And this is where I want to
start – after the treatment has finished and at the point where you can begin, bit-bybit, to deal with all that you have been through and all that is to come. You may
have had to endure months of treatment by knife, chemicals or radiation until you
are probably sick of the whole business, both literally and metaphorically. Now is the
time to heal, both body and mind. What I hope to do is to look in more detail at this
process and make a plea that this critical stage is given more attention than it has
had in the past.
I want to set out a framework in which to develop an understanding of what is
happening. The first part of this framework is the recovery process that has to be
gone through. For me this happens in three stages: recuperation convalescence and
rehabilitation. I make this distinction to represent the different stages that have to
be passed through and completed before moving on to the next one – each builds
upon the other, although there will not necessarily be a clear dividing line between
them
Let’s look at each of these in turn, beginning with recuperation. It is a widely held
belief, often correct, that the treatment of an illness is meant to make you feel
better. One of the many paradoxes of cancer is that, more often than not, the
treatment makes you feel worse. This is not surprising – we cut and possibly
mutilate, inject you with poisonous and powerful chemicals, subject you to
dangerous rays all in the name of treatment. The aggressiveness and power of the
treatments are a necessary response to the power of the disease, of course, but this
very power takes its toll in other ways. These interventions place enormous physical
strains on the body. There is often little time to recover from one treatment before the next one starts. The treatments themselves may make it difficult for you to sleep
and eat properly – two important parts of the body’s defence and recovery system.
Some of the treatments drain your energy and resources to such an extent that it’s
as much as you can do to put on the kettle. Add to this the emotional turmoil – the
dealing with the impact and implications of the diagnosis, the uncertainty, the
upheaval, the additional burden that you feel that you are imposing on family and
friends, the loss of so many aspects of your routine. Emotional stress can be as
energy consuming as any physical activity. After all that, is it any wonder that you
feel wrung out and exhausted, without resources or reserves? All too often I meet
people who, for quite understandable reasons, want to get back to doing the things
they used to before the diagnosis but find themselves falling at the first hurdle
because they simply find the whole thing too much. In my view, however smoothly
your treatment has progressed and however well you have tolerated the various
indignities to which we subject you, some time simply to recharge and recover – to
recuperate – is absolutely essential. This is the necessary foundation on which to
build recovery. There is no one right way or length of time to do this. It may be a
few days or a few weeks – how long will depend on your state of health before your
diagnosis, your age, the intensity, frequency and length of your treatment and so on.
Take however long you feel you need. Recuperating is the very first step in a process
of rebuilding.
The next stage is convalescence. This is a rather old-fashioned term, and I am sorry
it has fallen into disuse, despite its association with bath chairs, rugs, the seaside
and strengthening broth. The word has a Latin root meaning ‘to grow strong’ – rather
apt under the circumstances. Once you have recharged your batteries, then you can
begin to build up your physical and emotional strength. Again, there are no set rules
or guidelines for how long this can take, but I firmly believe that to miss out this
stage builds up problems later on.
Once you have recuperated and convalesced, then you have the foundation and the
energy to start doing those things that you want to do – and, perhaps, to stop doing
those things that you don’t want to do. I remember the patient of a colleague of
mine who, once she had completed her treatment for her breast cancer asked for
help to ‘.. sort out her job, her marriage and her cancer – and in that order.’ After
eight sessions, she had decided to change both job and husband. Now your
rehabilitation may not be as dramatic or as quick as that, but behind that rather
clinical term lies a whole raft of important issues. Perhaps one of the most critical of
these concerns the phrase ‘Getting back to normal’. I will argue that, if taken too
literally, it can be more of a hindrance than a help and may become a burden which
impedes progress. My reason for taking this stand is based on the observation that
once heard, the diagnosis of cancer can never be forgotten. Whatever your
prognosis, whatever your hopes, whatever your personality, the second that you
know that you have cancer your life changes irrevocably. For many people, their
sense of security and safety is undermined, their hopes for the future compromised,
their trust in their world denied. I will return to the process of dealing with that threat later on, but for now I simply want to acknowledge that to ‘get back to
normal’ as if nothing has happened is an unlikely hope. But of course, within that
phrase lie a number of other aspirations and messages. The whole process from
diagnosis, through treatment to completion is entirely and utterly abnormal. For
months your life is taken over by what must seem like an endless stream of clinic
visits, of being prodded and poked, scanned and punctured, of waiting and watching,
of hopes realised and hopes dashed. Your life has been taken over by others, run to
someone else’s timetable. There is every reason for wanting to get back to some
thing that is yours to control, yours to manage, back to something familiar.
However, to try to do that when so much has changed is a difficult, if not impossible
task. The trick is how to regain control and stability in a changed world.
Rehabilitation, therefore, is a process of regaining and refreshing old skills, learning
and refining new ones to enable you to live the sort of life you want. So what are the
tasks that have to be completed in order to get through the process that I have
outlined?
Regaining trust in your body
For many of you, your cancer will have been discovered whilst you were feeling well
and healthy – either through some sort of screening programme, through
investigations for another illness or for a relatively innocuous symptom. You may
have had few – if any – times when you felt ill or had very troubling symptoms (I
know this is not true for all, but it is a common experience nonetheless). And then
you hear the diagnosis, that word that will be forever etched in your memory. How is
it possible to have the disease that so many dread without feeling sick? This is
another of the many paradoxes of cancer. Surely if you are ill then you should feel
ill? This doesn’t last long however, because you then start treatment – and for most
people that’s when they start feeling ill. All the treatments change your body in one
way or another, sometimes permanently and often for a period of time that lasts
much longer than the treatment itself. One of the consequences of all this is that you
may lose faith in your ability to recognise when something is wrong with your body.
After all, you may not have been able to tell that you had cancer in the first place
and your body is now significantly changed so that there is a whole set of new and
unusual sensations to experience. This is most marked in the period after treatment
when the anxieties are still high and the uncertainty at a peak. Is this lump the
cancer coming back? What does that pain mean? Should I go back to the clinic, just
in case? Such anxieties are perfectly understandable under the circumstances. The
rules have changed and you need to learn a new way of handling the aches and
pains, lumps and bumps that you would not have given second thoughts to before all
this started. This will all be made worse by a perceptual bias and hypersensitivity to
these changes. You will be on the lookout for them in away that you were not before.
This is a combination of doing what you have probably been told to do by the staff
and your own real anxieties and fears. Previously insignificant and benign bodily
changes become magnified and interpreted as a result of your immediate past
experience. It is important to keep this in check and to give yourself so guidelines to manage your fears. For example, if the pain lasts for more than a couple of days or
gets worse, if there are symptoms associated with the site of your surgery for more
than a certain length of time, only then might you need to call your doctor. Your
consultant and specialist nurse will be able to give you guidance as to what they
think will be important. Whilst many people quite naturally, and over time, learn to
manage this unpleasant and frightening experience, some will not, especially if you
have always been a ‘bit of a worrier’ about your health. In this case, I think it
important that you have very open conversations with your consultant, your GP and
specialist nurse about how you can access expert reassurance quickly and without
having the sense of being a nuisance. Just as you have learned about your body
whilst you were growing up, so you can re-learn about it in later life.
Regaining trust in yourself
I cannot tell you how many people, from all walks of life, have told me that one of
the most difficult consequences of their illness and its treatment is their loss of
confidence. It seems to make no difference if you are a woman or a man, old or
young, have a high-powered demanding job or are retired. Cancer is a great leveller
in this (as in many other) respects. Of course one of the great problems with
confidence is that no-one else can give it to you: you cannot get your doctor to write
a prescription or buy it in a bottle from Sainsburys. You gain confidence by doing
things and developing your sense of self confidence – but how do you start when you
are not confident enough? It’s very easy to get trapped in a self-defeating and
immobilising loop from which there seems to be no escape. Exactly why this should
happen is not entirely clear. Part of it is probably due to the sense of uncontrollability
and the experience of powerlessness that cancer and its treatment engenders.
Another factor that will undoubtedly contribute is the sense that the world is not a
safe place any more – that you are vulnerable and at risk is brought home to you
with a terrible certainty. This can manifest itself in a number of ways, but one that
seems very potent concerns holidays. Many people have the idea that what would be
really nice at the end of treatment is a real holiday. You or your relatives may plan to
have a break very soon after treatment ends. But when it comes to it, when you
have finished, perhaps the prospect doesn’t seem so attractive after all. For many
people, the period immediately after treatment is marked by real feelings of
vulnerability and of not wanting to stray too far from home or from the easy reach of
medical and nursing care. Apart from the tiredness and fatigue, the feeling of not
being entirely safe is powerful – powerful enough to spoil a holiday or break. There is
also the sense that you cannot afford to look too far into the future, that planning
too far ahead brings its own worries and fears. Your time horizon has been
understandably limited to the next treatment, the next clinic appointment. You may
have been living one day at a time. To switch suddenly to planning six months ahead
seems to be a task too much. I must say that I regard the point at which someone
can look forward to and plan a holiday is key sign of recovery. It doesn’t always
happen quickly, and often not as quickly as people might like, but happen it does.
One of the things that I will advise people to do is to plan for short trips away – perhaps a couple of hours – to places they know and with which they are familiar.
Once they can do that without too much anxiety, then perhaps a few trips for a bit
longer – but not staying away from home overnight just yet. When that is done to
your satisfaction, you can plan to spend one night away – and not too far away – and
so on, building up gradually, one a step at a time. And that model is the key to many
aspects of the rehabilitation programme that will rebuild both physical and emotional
strength – one step at a time. It is much better to set yourself an easy target which
you know you can achieve and end up saying to yourself – ‘That was easy, I could
have done more of that’ rather than going too far too fast and feeling that you have
failed. Breaking down all the tasks of living into easily manageable chunks – a step at
a time – is a well tried and tested route to success. In our enthusiasm we often
forget just how complex and difficult this life business is, and it’s only when you have
to get back on the roundabout that you realise this. Sometimes I think that living is
like competing in an Olympic event – but because we take it so much for granted we
forget how demanding and tiring it can be, even at an ordinary, everyday level. Let’s
take this analogy further and pretend that we are all Olympic sprinters – a rather farfetched concept in my case, I should add – who have had a serious injury. We would
not consider getting back to running the 100 metres until we had fully recovered. We
would put ourselves on a gentle retraining programme, beginning with gentle walks
rather than sprints. Getting back to living life should be done in the same way. A
gentle build-up to the main event.
Of course one of the other factors contributing to lack of confidence is the
uncertainty that living with cancer brings.
Living with uncertainty
This is one of the most difficult aspects of living with the aftermath of cancer. You
will note that I have deliberately avoided using the phrase ‘coming to terms with’
uncertainty, because the reality is that this is something to be lived with and
managed, not ‘come to terms with’. For those of us not living with this threat, this
Sword of Damocles, truly understanding what it feels like is almost impossible. The
nearest that I 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 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. This brings me on to the next task.
Dealing with the world
You won’t need me to tell you just how helpful a kindly word or supportive act can
be. Likewise, you will need no reminders as how hurtful and insensitive can be other
words and comments. I have already quoted one phrase which I would class as not
only impossible but unhelpful and insensitive to boot – trying to ‘forget all about it
and put it all behind you’. This, of course, is often just what the person saying it to
you wants to do and it can make for significant difficulties in communication if you
want to talk about your worries whilst they want to act as if nothing has happened.
Although it is important to acknowledge other people’s fears and anxieties which
often provoke overly optimistic or excessively reassuring statements, that doesn’t
make them any easier to bear or tolerate. It is quite probable that you will already
have developed a mask that you put on in some situations in order to hide some of
your real feelings. Most people need to defend themselves against the unwittingly
hurtful or the crudely insensitive remark. Many of you will have learned to smile
sweetly as someone says brightly to you ‘My, you look really well’ when you actually
feel terrible. There will be times you will need to keep this defence going because
people will still say unhelpful things. Most people think that cancer is like other
illnesses – once treatment is completed, the disease is cured and then you are
‘better’. As you know only too well, the situation with cancer is infinitely more
complex than this simplistic analysis. As I said to you last time, you have a right to
privacy (so you don’t have to tell people everything) and you have a right to tell
people what is helpful and what is hurtful. This can be a very difficult task with some
people who will take offence very easily, but for your own protection I think that it’s
worth it – because, in the words of the advert, you are worth it.
Regaining mastery and control
This is the final task which builds on all those tasks that I have outlined before. It is
the alternative to getting back to normal, a place which I said could not be
rediscovered. You are in a new and sometimes frightening place where the old
certainties and structures are gone and where you are having to look at the world
afresh. This doesn’t mean that you have to change everything, it may mean that you change nothing. One way of thinking about this is to use yet another analogy. Most
of us have a sort of life plan, more or less worked out. For some people this is a
highly detailed route identifying what we will be doing and by when. For others of us
it is a rather vague amble with the odd aspiration sketched in. But once you meet a
life threat, somehow the map becomes less clear, sometimes even a blank. This is a
terrifying experience – where do you go from here when you can’t see the future? For
some people this is a chance to review and reshape their life. The realisation that life
is too short gives an opportunity to decide what you want your life to be about. And
there is nothing stopping you saying that you want it to be about what it was about
before or it can be about wanting to stop doing what you did and become the world
bungee-jumping champion. Everyone will find their own route and their own path
and it is for people like me to provide support and help during that process.
To summarise thus far, what I have tried to do is suggest that the end of treatment
is the beginning of something else – a rebuilding process that needs to be managed
and directed. Paradoxically, in psychological terms, this may be the most challenging
and difficult time of all. It is a time of immense psychological vulnerability when
people may feel that they have gone to pieces and simply cannot cope any more. So
a word here about coping – a term as misused and burdensome as any. During
treatment you deal with life as best you can because you have to. You may not be
comfortable or find it easy, but manage you do. During this time, there is often a
good deal of support – both formal and informal – available. You are also dealing with
very obvious and tangible stresses. Then, all of a sudden, you are on your own with
just as many threats but these threats are much less obvious and immediate. And
very commonly, people find that when they can relax their guard a bit, let go of the
reins, that’s when they feel they can’t cope, that they are going mad, not managing
things. All this at a time when they – apparently – should be able to cope better
because the stresses are less. I have already argued that, in fact, the stresses are no
less, but different. And because you may be exhausted and washed-out, your ability
to mobilise yet more energy is compromised. And what makes it worse is that you
may be allowing yourself to think more deeply about some of the things that you
have been pushing to the back of your mind – particularly about the future and about
trying to make some sense of what has happened to you. So there is often a sense
of turmoil, a lack of coherence in your understanding of yourself and the world. In
my view, this is the point at which the need for some sort of support and space in
which to talk through some of these issues is at its peak. You may need some time
to sit down with someone – it doesn’t have to be someone like me although it can be
– someone you trust – to reflect of what you have been through and to begin to put it
in its rightful place in your personal life history.
I have not spoken much about mood yet and how this is linked up with all the other
factors. There is, as you might imagine, a complex relationship between mood and
all the issues that I have referred to. If you are feeling low you won’t find it easy to
do things, your self-confidence will be low and your level of self-criticism high. If you
are unable to do things this in turn will make you low, so you can easily get trapped in a downward spiralling vicious circle. But there are two sets of feelings that
commonly arise at the time of treatment finishing which we need to talk about. The
first of these is a sense of abandonment. This makes sense. After all, for many
weeks – if not months – you will have been cared for by a large number of people, all
of whom have your welfare and well-being at heart. You may have met other
patients and relatives with whom you have been able to swap stories and get
powerful support from someone who really understands. There has always been
someone there to check out that little niggling pain or troublesome symptom. There
has been a routine, a structure for you to trust in. Then all of a sudden, it goes. One
of my patients described it like this:
‘I got the impression of being balanced on a plank somewhere high up and with
nothing to grab hold of. I felt as if I were about to fall off into some abyss.’
Such feelings of aloneness and abandonment are not in any way a criticism of the
people who have been caring for you. It is simply a reflection of the fact that they
now have to focus on those who are starting out on the process that you have
completed. The second set of feelings that some people experience is a sense of
disappointment that they don’t feel more joy and happiness at the end of treatment,
but rather a sense of let down, anticlimax almost. This can be in marked contrast to
what they might have expected. How is it that expected happiness does not arise?
There are a number of plausible explanations. One of these is that it hasn’t actually
finished as you may still be experiencing the effects of treatment even though its
delivery is complete. You may also be still visiting clinic for check-ups. And I have
already referred to the uncertainty and sense of threat that may continue well
beyond the actual end of treatment. There is also the fact that you may be
completely de-energised – plain exhausted – which does not leave much spare
capacity for unrestrained ecstasy. In addition, you will have been looking forward to
the absence of something unpleasant rather than the eager anticipation of the arrival
of something pleasant. So I am not surprised at patient’s surprise at their lack of
elation as treatment finishes.
It isn’t all doom and gloom and there will be times when you wake up feeling better
than you did the day before and this slow process will gradually change until one day
you wake up feeling so well that you realise just how awful it has been. Remember
that for months you may have been having to live one day at a time under the most
difficult and challenging circumstances. You may well have been unable to enjoy
those things you usually like – your sense of taste and smell may have been affected,
your desire for food undermined by nausea, your ability to go out limited by your
lack of energy. But now you are freed up from the routine of treatment, from the
more immediate and restrictive side-effects of that treatment you can begin to move
away into a different space. Again, I would emphasis the principle of one step at a
time. It is important to build up gradually and by maximising your chances of
success. Small, easily achievable targets and goals will be the building bricks of your
success. In closing, I want to try and bring some of these strands and themes together in a
coherent framework. What I have tried to do is give a sense that the end of
treatment can be as challenging a time as any that you experience. It is made more
difficult by the profound physical and emotional assaults to which you have been
subjected. And it is the time when the obvious sources of support are unavailable. I
have argued that there is every reason for feeling frightened and out of control at
this time. But what I have also tried to do is give a sense in which you can manage
this process in a way that may avoid some of the pitfalls. Regaining and rebuilding
your strength – both physical and emotional -is a task that I cannot emphasise
enough. That is your foundation. And taking the time to reflect, either with someone
or on your own, about where you want to go from here, can begin to give you the
sense of mastery and control that you may have been denied during the treatment
itself. One part of this is the process of putting the experience of cancer in its right
place in your life. For months, it has dominated, been in control. Now is the time to
begin the long, slow process of putting in it right box in your life – not forgetting
about it, not denying its importance or power, not pretending it didn’t happen. It has
to be incorporated into your own life pattern and experience in such a way as to not
interfere and interrupt any more than it has to. You accommodate and assimilate it
into your self, not come to terms with it.
The reflective process may face you with choices about where to go from here. The
exact path you choose (or the one that you have already chosen) is entirely a matter
of personal choice and circumstance. Some of you will become stalwarts in the
voluntary sector, helping others by running and managing support groups and
becoming activists in cancer care and cancer politics – others will want to leave that
part of their lives in a separate compartment and distance themselves for that
experience. There may be constraints of what you can and cannot do, and that has
to be built in. Running the London Marathon may not be everybody’s dream and it
may even be a physical impossibility. But there are other aspirations and hopes that
you will have fostered during your life. This may the time to review those and make
some choices – some may remain dreams, some will be less important than before,
some may take on a greater value, some will become a reality. They are yours and
yours for the making.
Dr Peter Harvey
This is an edited version of a talk originally given by Dr Harvey at the
annual conference of the Cancer Self Help Groups.

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About gabbymottershead

Confidence and NLP Coach, Feng Shui enthusiast, Reiki healer, Inflammatory Breast Cancer survivor and advocate, Tropic skincare ambassador, party animal, proud grandmother, mother to two wonderful sons, wife to Paul, loving life in Manchester, the best place on earth. Love live music, my house rabbit and general shenanigans.
This entry was posted in breast cancer, cancer, chemotherapy, depression, healing, inflammatory breast cancer, Uncategorized. Bookmark the permalink.

2 Responses to When treatment ends – By Dr. Peter Harvey

  1. Pingback: 2013 and what it means to me – High Five! « Gabby Mottershead

  2. Matthias says:

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