Tuesday 14th June 2016
This afternoon I attended the first session of a 5-week course at the Lodge, the cancer support and information centre at our local hospital, which is run by Macmillan’s, an excellent cancer support charity here in the UK.
The course is being run by the clinical psychologist on the salaried staff at the Lodge, together with two clinical nurse specialists. Later in the course, other speakers will be involved as well.
In advance of our first meeting, we had all been given some paperwork – a couple of questionnaires to give the course leaders an idea of where we were as individuals – they were multiple choice questionnaires, including the HADS (Hospital Anxiety and Depression Scale) questionnaire:
along with some details of the course and what we could expect:
Also included was a quite excellent article written by a clinical psychologist in Leeds, entitled “After the Treatment Finishes – What then?”
There are seven of us in the group: five ladies and two gentlemen, and we got off to a good start over a cup of coffee in the lounge as everyone started to arrive. All having had cancer, we have an immediate common bond which breaks the ice, and as I’ve discovered since beginning my journey last year, people are generally very friendly and lovely.
We then went upstairs for the first session, which was initially a “getting to know you” session, where we were paired off and given some printed guidelines and invited to interview each other, about where we were born, our careers, hobbies and interests, did we like living in Torquay, what did we expect to get out of the course, etc. etc. We then went around the room introducing each other to the rest of the group, which was a lovely way of doing it, and more interesting than introducing ourselves.
Andrew, the psychologist, wrote our names on the flip chart as we were introduced, and later, put beside each name, the number on a scale of 1-10 representing how far we each felt we had reached on the “moving on” scale. We all had different stories to tell.
We were asked what ground rules we believed should be laid down for the group sessions. I thought this was great – they didn’t just tell us how to behave, but allowed us to suggest what we thought was best – examples included “confidentiality” (at the top of the list), “no swearing” (!), not talking over each other, respecting each other’s differing opinions and beliefs, and being free to share as much or as little of our stories as we felt comfortable with, and not to worry if any of us became emotional (these two from the leaders). Andrew told us that quite often people will bury their emotions in order to get through all the physical and practical aspects of cancer treatment, and it is only during the moving on period after it has all ended that these emotions can come to the surface, and sometimes groups like this can bring these things out. This part of the session showed us that we were in a safe environment, amongst friends, and that we could be in control of what happened, which was very reassuring.
He collected our completed questionnaires, and asked what we thought about the contents of the package, especially the article. Several people said that they felt the article was directly about them, and that this man must have suffered from cancer himself, in order to understand so well how we feel! Andrew said that he suspected he had, and said that other people had said exactly the same thing after reading the article.
I asked Andrew if there were any copyright issues associated with any of the material he was giving us, because I would like permission to share what we are learning for the benefit of those who are not so blessed with the support we have, and he readily gave me this permission, and agreed wholeheartedly when I said “with the exception, of course, of anything which comes up in the group which would be deemed to be confidential.” I have included the text of the article at the end of this post.
There was some discussion about the recent crass remarks from broadcaster Noel Edmonds, who says that cancer is caused by “negative energy” and if people thought more positively, they wouldn’t get cancer. Andrew said words to the effect that this was a load of dangerous nonsense. I mentioned the re-running of the long Youtube video “The Truth About Cancer” which basically says that it is not cancer that kills people, but chemo, and that the medical profession is in cahoots with “Big Pharma” to make lots of money out of expensive medicines which don’t actually work but do more harm than good. There’s been a lot of talk about this sort of thing recently. The recommended alternative to chemo is apparently lots of fresh vegetables. Andrew said that trials had been carried out on a large sample of cancer patients and it was shown that as many vegetarians as red meat eaters got cancer, and that the occurrence of cancer is quite random.
In the middle of the session we had a break for tea, and I said that I would bring some home baking next time!
Andrew wrote the following diagram on the flip chart:
He drew the graph, and asked us to contribute our comments about the feelings we experienced at each stage, and wrote them on the graph, and the result more or less coincided with the printed hand-out. I have written on my copy the additional words which came up in the session. This helped us to explore what we thought “moving on” might involve.
We talked about the rollercoaster of emotions and all agreed that this was a good description – I have mentioned this in my Cancer Diary on this blog. The above chart is obviously simplified, because for most of us there are many more ups and downs than the simple curve in his chart!
For some of us, the news that we had cancer came as a complete bolt from the blue, because we had no symptoms and didn’t feel ill (OK, I already had M.E. and ulcerative colitis so wasn’t in the best of health, but had no extra symptoms to cause me concern). This meant that the news was a total shock. For others, they had struggled with ongoing symptoms and no diagnosis for perhaps many months, and for them, although the news was of course a shock, it was also mixed with anger (“Why didn’t they discover this sooner?”) and relief (“Thank goodness I now know what it is”). One person made the interesting observation that it appeared that those who were feeling well before their diagnosis seemed to be coming to terms with it better than those who had actually felt poorly.
Andrew pointed out that with the majority of illnesses, you feel ill, and you have treatment that makes you feel better. Cancer is different. Although there are exceptions, a lot of people feel fine, and then they have treatment that makes them feel worse, not better. This sets cancer apart from other illnesses and makes it that much harder to deal with.
I said that after my initial diagnosis, my first reaction was “Ridiculous! – I don’t get cancer – that’s what other people get!” I then felt it was grossly unfair – not on me, but on my poor hubby who had yet to start enjoying his well-earned retirement. That evening, I shed some tears, and was a bit in shock. After this, in the coming days, I felt a weird sort of euphoria, and the leaders of our meeting said that this was far from unusual. Andrew said this was a normal threat response – a denial and distancing of oneself from the threat. This was reassuring because at the time I thought it was a pretty bizarre response! Actually, throughout the session, as we shared with each other, we came to realise that there are no “right” or “wrong” responses or emotions; all are valid, and particular to each individual, and what we considered to be an inappropriate reaction, was often shared by more people than we realised!
I also spoke about how confused I was over my response to hearing that I was cancer free – I had expected to feel as my hubby did at the news: relieved and jumping for joy, but I felt nothing, and I certainly didn’t feel like going out and celebrating. Over the coming days I actually felt quite depressed. Andrew said that this was also a very normal response. It’s so reassuring to have someone tell you this, because it can be a very lonely experience when you think you are the only one to feel a particular way, and it’s made worse because you feel guilty for feeling like that, and I remarked that this was why I found sharing with others so helpful, because we can all identify with unexpected reactions and responses.
Andrew said that it is a strange thing about the brain, that we do tend to be extremely hard on ourselves, and tell ourselves that we should be feeling this, or thinking that, or behaving the other, and so on – and it would be considered cruel if we spoke in such a manner to another person! I told him that my singing teacher used to say that far too many of us suffer from a hardening of the oughteries! He agreed that this was a helpful expression, and added one of his own that he’d heard from a colleague – musterbation lol!!
As we worked our way around the graph, and got to the bottom of the curve, Andrew explained how very often, the thoughts go round and round in our heads, and we can get trapped and unable to move forward, as indicated by the recycling arrows.
Another thing that the brain is very good at is responding to seemingly overwhelming threat by closing down and retreating to a “safe” place and burying its head under the blankets. This can lead to depression, which he explained is very different from sadness. He mentioned Elisabeth Kubler-Ross and her famous “Five Stages of Grief” and said that this applies very much in our situation, because having cancer, one goes through many stages – of loss, bereavement, anger, denial, sadness and many other emotions, which need to be worked through, and this is all very normal.
He explained that depression is not a healthy place to be, because it is a “closing in” and forms a downward spiral where people feel awful, so cut themselves off from others, which makes them feel even more awful, and they often need help to come out of it. Sadness, on the other hand, actually has its place on the ascending curve of the graph, as part of the resolution process, and is a much healthier emotion, as one begins to come to terms with what has happened, and starts to move forward. It is at this stage that one finally begins to be able to think more clearly about things, and to sort out how one feels – not something people are able to do during the cancer treatment process, when we just have to put our heads down and forge ahead and “get through it.”
We spent a lot of time discussing how the experience changes us, and that this “moving forward” process isn’t a matter of “coming to terms with it,” or “getting over it” – so many people assume that once you’ve had your treatment and you’ve recovered physically, you can just get back to your normal life again and “put it all behind you.” This is far from the truth. Cancer changes you in fundamental ways. One’s confidence can be severely shaken, and you are made aware of your own physical vulnerability in a way that perhaps you never thought about before, and there is anxiety about any new symptoms or unusual feelings – is this the cancer coming back? etc. etc. For people who have had time off work, and are anticipating their return to the workplace, this can be a very difficult time, because work colleagues expect them just to slot back in again as if nothing has happened, and quite apart from the lingering physical limitations which can take a long time to right themselves, if at all, the emotional toll cancer takes on a person can change them, and they may feel isolated and estranged from their colleagues on their return to work.
We discussed the problems of dealing with the crass and insensitive remarks thrown at us from people who simply have no idea what we have been through, or what they are talking about. This will be covered in a future session when we think about communication.
We talked about the need to start setting targets as part of the process of moving forward, and the fear and insecurity people can have, venturing out into the big wide world again after this experience. People can be very afraid of venturing too far from home or spending any length of time away, and there is fear of failure, and of not coping, etc. Andrew said it is important to set small goals to start with, that are easily achievable; confidence is built on small victories, layer by layer, like the layers of an onion. If we set too high targets, we are setting ourselves up for a fall, which will knock our confidence.
When Andrew first approached me about joining the group, I said that I felt I was doing very well, and was moving on fine, and probably didn’t need to do the course. He was delighted that I was so positive and coping so well, and said that my positivity could be a real asset in the group.
Referring to the numbers we’d assigned to ourselves on the “moving forward” scale of 1-10, when I said my score was about 9 (and one other person said theirs was too), he said that was great, and he wanted to hear how we felt we had got to that point. Others ranged between 3-4 and 7 – 7 being the predominant number. It was good that none of us put ourselves at 1, so we are all doing well in our own way. Andrew said that if anyone felt they had a low score, this was no reflection on them as a person, and we all progress at our own rate. One person said she felt inadequate because my score was so high, to which I replied that in no way would I ever want anyone to feel upset or put down because I was coping so well… Also, some people may have only just finished their treatment, whereas others of us are several months, or even two or three years on from that stage, and we had managed to make more adjustments to our changed circumstances. I think it is also important to remember that everyone’s personal life is different and people have varying degrees of support at home, or in the workplace. We are all different, and all need differing forms and degrees of support and encouragement. Those of us who are married are in a different position from those who are not – not just from the point of view of support at home, but also because those who are single feel vulnerable and inadequate and even unlovable – “nobody will want me because I’ve had cancer” or “because I’ve got a stoma” or “I’ve had a breast removed” etc. etc.
He said that later on in the course, we’d look at these scores again, because, interestingly, after spending time exploring their emotions, and discussing their feelings within the group, people often find themselves revising their scores either upwards or downwards as they unpack their feelings in a more detailed way.
From wondering whether it was fair of me to take a place on the course when I felt I was managing fine, having attended the first session, I found it incredibly helpful and illuminating, and hearing what other people had to say about their own stories and feelings, I know that I am going to learn a lot in the coming month. I am sure, also, that through our common bond, and through sharing in the group, that friendships are going to emerge from this small circle of people who started out as total strangers, thrown together because we’ve all come through cancer. Already I feel drawn to one or two of them in particular, as we share so many things in common – interests, hobbies, love of cats, whatever! I know that this is going to be a very positive experience, and I am looking forward very much to future sessions.
I consider myself extremely fortunate to live in a place where I have had the best possible care and treatment to deal with my cancer, and I bless our wonderful NHS for that! However, if that wasn’t enough, I am now able to take advantage of continuing support and encouragement through the excellent cancer support charity Macmillan’s, both with this new course, and the monthly relaxation sessions I attend at the Lodge.
The Lodge does not permit anyone to become a volunteer until they are two years on from their cancer all-clear; this is a wise policy, because, confirmed by what Andrew said today, we can have repressed emotions without even realising it, and dealing with others who are emotionally vulnerable could trigger deep-seated and unresolved emotions in ourselves, which could be counter-productive if we are in a position of attempting to help others. I cannot wait for my two years to be up, because I would dearly love to be able to “put something back” and do something of real practical value to help others through what I myself have been helped through so admirably. It’s like a relay race – people with cancer are helped, and they go on to help more people with cancer, who in their turn help yet more people with cancer – many of the volunteers are people who have had cancer. All the leaders, at the beginning of today’s session, said that with their training and experience, they can do their best to help us through, and to empathise, and get alongside us, but only someone who has actually been through it can fully understand what it is like.
I am writing these detailed accounts of the course sessions mostly for my own benefit, so that I do not forget what I am learning and gaining, but I hope that in some small way, what Andrew and his team are doing for our small group of seven individuals, can spread further and wider and benefit many more people for whom there is no local support, and nobody to turn to. I am very grateful to Andrew for giving me permission to do this, and I hope I haven’t left anything out!
After the Treatment Finishes – What Then?
by 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 roller-coaster, you will be strapped in and sent off 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 your 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 by bit, 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 you, 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 vey 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 would 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 lies 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 any 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 while 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 a way 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 some 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 is 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 Sainsbury’s. 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 may 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 a 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 step at a time, and that model is the key to many aspects of the rehabilitation programme that will rebuild to 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 than 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 his analogy further and pretend that se are all Olympic sprinters – a rather far-fetched 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 for 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. 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 of 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 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 where people may feel that they have gone to pieces and simply cannot cope anymore. 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 on 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 does. 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 – anti-climax 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 patients’ 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 emphasise 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.
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, this has dominated, been in control. Now is the time to begin the long, slow process of putting it in the 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 not to interfere and interrupt any more than it has to. You accommodate and assimilate it into yourself, to 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 from that experience. There may be constraints on what you can and cannot do, and that has to be build 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 be 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.
This is an edited version of a talk originally given by Dr. Harvey at the annual conference of the Cancer Self Help Groups.