The Cancer Companion E-Book

Toni Lindsay

• Herausgeber: WS
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 303

Veröffentlichungsjahr: 2021

Beschreibung

A cancer diagnosis can cause a torrent of unfamiliar emotions in patients and those who care for them. Turning modern psychological research into constructive strategies, The Cancer Companion is a compassionate, jargon-free guide with a lasting and meaningful impact on the mental wellbeing of anyone whose life has been affected by cancer.

Leseprobe

About the author

Dr Toni Lindsay is a qualified Clinical and Health Psychologist who has been working with both adults and adolescents for over ten years. She works at Chris O’Brien Lifehouse in the Oncology department, and has a special interest in the care of adolescents and young adults with cancer. She is an AHPRA-approved supervisor and works predominantly from an Acceptance and Commitment Therapy framework.

To all the people whohave shared their stories.

Contents

Welcome

Part 1:  On treatment

1. And then it was cancer …

2. Normal

3. Finding your purpose and meaning: part 1

4. Preparing for treatment and having a plan!

5. Chemotherapy

6. Radiotherapy

7. Surgery

Part 2:  Off treatment

8. Finishing treatment

9. What if it comes back?

10. Finding your purpose and meaning: part 2

11. Why is everyone behaving like I’m back to normal?

Part 3:  Living with advanced cancer

12. Living with advanced disease

13. Finding your purpose and meaning: part 3

14. Planning and decision-making (even if you don’t need it!)

Part 4:  The psychology part: How can you manage all of this?

15. Mood vs treatment

16. Anxiety

17. Sleep

18. Appetite

19. Fatigue and exercise

20. Body image

21. Relationships and sexuality

22. Working

23. Being present

24. Being grateful

25. Managing other people

26. Pain

Some final thoughts

Acknowledgments

References

Index

Welcome

If you have picked up this book it’s likely that you or someone in your world has been diagnosed with something.

It might be something that the doctors are saying is okay and will be simple to fix. Or they may be saying the opposite, that it is something that can’t be fixed. Or somewhere in between. Regardless, it’s likely you are feeling a bunch of things you might not have felt before.

This might look like fear, or terror or anger. Or it might be nothing, with no thoughts in your mind at all, a quiet that you know can’t last. Or it might be loud and thunderous, with more thoughts than you can pay attention to all zooming from corner to corner in your brain. Or you might feel relieved that the thing you have been worried about for so long finally has a name and a plan. Or you might be just hoping and pretending all of this will go away, and by keeping busy the reality will slip off back to where it came from, unnoticed.

Whichever of these it is (or it might be others, or a combination of all of them), you aren’t going mad.

This book isn’t meant to fix any of these things — these things that are coming up for you are meant to be there. And it isn’t likely that you will be able to get rid of them or ‘fix’ them. It’s likely that nothing like this has ever happened before, so it makes sense that the way you think and feel about it will be different to how you have thought about things in the past.

For now, it’s about trying to make sense of what is happening in your head, and the heads of the people around you, when your world is suddenly turned upside down.

The thoughts in this book aren’t from my experience. They are the collective wisdom and worries of thousands of people with cancer and their families who have shared some of their emotional experiences with me. This book will step you through the main stages and concerns that people have during their cancer experiences. Some people will be surrounded by lots of family and friends, while others may feel quite isolated. Either way, many of my patients talk about feeling that no one understands what they are going through. Hopefully, this book will provide some voices that offer some shared experience and ideas about how to navigate your way through the difficult times.

Like most books, it’s best not to read ahead. It’s likely that your brain is already projecting forward into an uncertain future and panicking, with loads of thoughts about what might happen next. You might even be mourning the loss of some of your future. If you read too far ahead — or even, for that matter, think too far ahead — that feeling of overwhelm is likely to come in like an unexpected wave, knocking you off your feet and dumping you on the shore. Instead, reminding yourself of where you are right now, in this moment, is helpful. You know what is happening right now. You can make decisions about right now. That’s much harder for the next 24 hours, two days or year. I am talking about being focused on the next moment, or the next hour, no further out than that. You can do something in the here and now. Even if what you are focused on is a very small thing, it is likely to feel helpful. Lots of the things we will talk about in this book are about helping you get through lots of little moments rather than big, nebulous things that are too huge to even try to make sense of.

The book is broken into small chapters that you can hopefully absorb in bite-sized chunks. If you read it once and it doesn’t make sense, come back to it later. People move through all this at different times, so some information might not be applicable to you, or it might not be the right time for you. I have tried to order the information logically, based on how things might progress emotionally for people. But if everyone was able to do this all the same way it would be easy to navigate. So I am willing to bet at least once or twice you will read some of this and it won’t be the right fit, won’t make sense or you might just think it’s rubbish. That is okay too.

In this book, you will find some quotes and stories from people. These are based on the experiences of lots of people I have met over the years, and any identifying details have been removed. Hopefully, there will be things in their stories that will help you in navigating your own story. Sometimes it can be really comforting to know you aren’t alone in something.

The first three parts of the book talk about the stages of cancer — being diagnosed and starting treatment, finishing treatment, and managing advanced disease. Part 4 of the book is about the psychological things you can do to help you navigate through these. I have made sure to cross-reference, so if, for instance, we are talking about managing thoughts about chemotherapy, I will direct you to the chapter where you can learn some strategies to help with this.

Tips for carers

It is important to note that it is not only the person with the disease who is impacted by cancer. For every patient, there are generally at least a couple of people travelling along with them and trying to make sense of this too. So, throughout the book, you will find some helpful tips for carers. These might be about how to better meet the needs of the person who is unwell, or they might be about the carer’s own feelings.

Some important concepts we’ll talk about in the book

Part of what makes cancer challenging is that people sometimes try to use strategies that have worked to manage thoughts and worries in the past, but find they don’t work with these new cancer worries. This is largely because the worries are different.

Most people find they worry about things that fit into two categories: worries that are fixable, and worries that are quite irrational (there are some others, but let’s focus on these two for now). When a worry is fixable — it might be a problem or something you can think through logically — our brain does pretty well with them. We are naturally good problem solvers and can generally get to a place where we can make sense of whatever is troubling us. The other type of worry is the one where we get caught up in something we recognize is probably a bit irrational (this doesn’t stop us getting caught up in it, though). It might be about other people, or thoughts about ourselves; for instance, when we convince ourselves that we said something stupid at lunch and weren’t as funny as we thought. For some people, these kinds of thoughts might be fleeting, but others will kick them around and around in their minds. To get rid of these thoughts it’s sometimes helpful to tell yourself that they are ridiculous, or do something to distract yourself. And for these types of thoughts you may have found this works really well.

But for thoughts about the cancer, these things probably won’t work as well. For some practical things — like having to decide between two types of treatment — problem-solving your way through will work really well. For these kinds of thoughts, we will talk about strategies that look at challenging the thought and examining its helpfulness. (Within psychology land we call these strategies Cognitive Behaviour Therapy (CBT). Both types of strategies that we’ll talk about in this book — CBT and Acceptance and Commitment Therapy, or ACT — are cognitive therapies; that is, they are concerned with the way we think.) But those other thoughts — like the ones around what is going to happen in the future, or fears about the cancer coming back — aren’t likely to respond to this stuff. Because the worries about cancer are different.

Cancer worries don’t tend to have an answer. No one can tell you for certain what is going to happen in the future, and even if you are told that your treatment is finished and all is okay, you are likely to have worries about the cancer coming back. People can very clearly tell me that they know things will probably be okay, but they can’t stop worrying about it. This isn’t something that problem-solving will work for, or something you can tell yourself not to worry about. And you can’t convince yourself you are thinking irrationally. Actually, for these kinds of thoughts, usually trying not to think about them doesn’t work at all. They will just appear somewhere else (usually at 3 a.m.) because they are different types of worries. Distraction might work a little bit, but usually in a temporary way.

Acceptance and Commitment Therapy

So, I would like to borrow some ideas from a type of therapy called Acceptance and Commitment Therapy, or ACT for short (if you are interested to read further, see the References list on p. 208). The main premise of ACT is that, as human beings, we will experience difficult things and challenges to our sense of existence. We can fight against these things, or we can learn to manage what it means to have these things present in our lives. Instead of trying to get rid of thoughts and difficult feelings, and pushing them away, we learn how to allow them to be present in our lives. It takes incredible amounts of energy to try to get rid of anything difficult or unpleasant that comes into our minds.

I would like you to do an experiment. When you have read this, I would like you to set a timer on your phone for two minutes and close your eyes. Until you hear the timer go off, I want you to stop thinking. I want you to turn off the thought machine and have nothing in your mind.

How did you go?

I am willing to bet that I set you an almost impossible task. You might have been able to do it for a couple of seconds, but I doubt you managed a couple of minutes (I’m happy to be proven wrong). But I am hoping that what you noticed is that by doing this you are trying to stop your brain doing its job. Our mind thinks constantly — while we are eating and sleeping and talking. If we try to stop it thinking, we are stopping it doing its job.

So why would we try to stop our brain worrying about things that feel so important, like cancer?

It doesn’t make much sense that you could simply not think about the cancer, or what might happen next. And it doesn’t seem that it would be helpful for your brain to never think about these things ever again.

Instead, in this book I talk a lot about the idea of allowing these thoughts to be present and just noticing them. By this, I don’t mean trying to push them out of your mind or getting rid of them. I mean that, when these difficult thoughts come up, just tell yourself that it is okay they are there, and notice what happens in your body and how you feel when they are present.

This might feel really unnatural. We have changed the game, right? You have probably been trying to get rid of any difficult thoughts your entire life. And now we are going to let them be there, and often expect them to be there. And think about it being okay that they are there (and almost expecting them to be!).

When thoughts turn up in our mind it is hard to believe they might not be true. It might be that you do have many thoughts that are accurate, but there will also be many that aren’t. The other important premise in changing the way we think about thinking is recognizing that the things that show up in our mind are just thoughts. When they are swirling around in your mind it’s hard to believe that they aren’t 100 per cent accurate, particularly when they feel so real. But the thoughts are a result of your brain doing a job. They aren’t predictive or informing or sometimes even accurate — they are just thoughts.

It is helpful thing to remind yourself of this (and even tell yourself) when the thoughts are loud and convincing you how terrible all of this is. Or at 3 a.m. when the night is quiet and you are terrified, and the thoughts keep coming.

They are just thoughts.

And they are thoughts that we expect to appear. Cancer is a really tricky character. It fills us with uncertainty and worry about the future, and often tells us that we aren’t going to be okay. So in this situation it makes sense that we might expect some difficult thoughts and anxieties to come up, right? In fact, if they didn’t turn up that would be even more perplexing. Can you imagine your mind with absolutely no thoughts?

Just remember, it’s your brain doing its job. Cancer is likely to bring lots of these things up, and it’s okay that they arrive. They are just thoughts, and we will work out what to do with them.

By the way, this will also work for any other thoughts in your life, not just the cancer ones.

So, enough about that. Let’s just get on and talk about it.

Part 1

On treatment

Jane is 48 years old and is used to juggling things. She has a very successful career as a lawyer in a big inner city firm, and has a husband, David, and two kids, Molly and Ethan, who are seven and nine respectively. Jane and David have a strong group of friends they’ve known since university, as well as a bunch of people they have got to know in their local area with kids the same age as theirs. They like to go on holidays, and have a trip planned to the Gold Coast in a couple of weeks, because Molly is finally tall enough to go on the rides at the theme parks.

For the past couple of months Jane has been feeling tired. Well, she always feels tired, but she has felt more tired than normal. She has also been bloated. Not so much that other people would notice it, but when she eats she feels uncomfortable. She had gone to the GP, who suggested Jane go for a scan, but she hadn’t managed to get the time to do it.

One day while she was waiting for Molly at soccer practice, Jane felt a sharp stabbing pain in her abdomen. She thought it would go away, but that night she ended up in the emergency department. She was given lots of scans and tests, but she knew when the doctor appeared in the early hours of the morning at the end of her bed that the news wasn’t good. She had a big tumour in her ovary and they were worried about something in her liver. The doctor told Jane other things, but she couldn’t remember what they were, and if she is honest, she didn’t take in much information for the rest of the night, or the next day, with lots of doctors and surgeons coming to talk to her. She was taken for surgery a couple of days later, and it was confirmed: she had ovarian cancer.

David, Jane’s husband, went into planning mode, scouring the internet looking for as much information as he could about ovarian cancer and possible treatments. Every time he saw one of the doctors he had lots and lots of questions, but he seemed to find that the more questions he asked, the more muddled things got in his head, and the more anxious he got. Jane didn’t really feel anything at all. She knew it was happening, and she knew it couldn’t be good, but she couldn’t make herself think about it anymore than that. It was almost as if it didn’t feel real.

Before Jane went for the surgery she was a little nervous, but it wasn’t until she saw the scar across her stomach, just above where she had the caesarean scar from when she had Molly, that she started to make sense of it. Even then, it felt like a blur that she didn’t quite know what to do with. She knew that she should tell people, and talk with the kids, but all she wanted to do was watch Netflix. She had told work that she would be away, but was still hoping that perhaps she would be back in a couple of weeks.

As the days went on, Jane and David were getting grumpy at each other, and neither knew what to do. When the doctor told them Jane would need to have chemotherapy, she sent a text message to all her friends and family, and was of course inundated with offers of support. There were people who started calling her many times a day, and then there were people she heard nothing from, which made her feel a combination of anger and sadness. Some people, who Jane thought would be the most helpful when something bad happened, turned out to be not very helpful at all.

When Jane got home from the hospital, she and David sat down with the kids and told them that she was sick, but didn’t want to use the word cancer. There had been some other kids in their classes with parents who had cancer, and she didn’t want them to be worried. And they weren’t. They just kept going to school and playing with their friends in the same way they always did. They had casseroles and spaghetti bolognese delivered almost every day by different friends. Jane felt completely overwhelmed by the support.

While Jane recovered, she knew she should be sorting things out. She had been told that the treatment was pretty difficult, so she knew she should organize things for the kids and David in case she wasn’t well enough to do what she normally did. She thought a lot about what she needed to do, but felt too exhausted to do any of it. She had tried to keep things as normal as possible, but found she wasn’t able to focus and pay attention very well. She had tried to do some work from home but couldn’t manage it. Jane started to panic that she would always be like this. She couldn’t sleep, and when she lay in bed at night thoughts popped into her head that she couldn’t bear to think about. She was scared, and she was anxious, but she felt like she couldn’t tell anyone, because Jane was always able to manage things. Instead, she smiled, told people she was doing well, and spent lots of her time worrying about things when no one was looking.

1.

And then it was cancer …

The news hit me with a thud. And then my ears felt like they were ringing for days. I couldn’t hear or make sense of a word anyone was saying. And then it became clear, the words smashing around in my head had meaning. I had cancer.

Katrina, 42 years old

I often think about the way that people describe the moment of being diagnosed as a bit of a vortex, where the world seems to speed up and slow down at the same time. If this has happened to you recently, I suspect this feeling will be quite close to the surface for you.

Research has shown that after people hear the word ‘cancer’ they don’t hear anything else in the consultation, and it will often take several appointments with their doctors to start to make sense of what they are hearing. The way people manage this will be different from person to person; but most people, as with any other shocking bad news, are likely to feel quite numb and disconnected to start with.

In my practice I often talk about the ‘72-hour window’ or the time it takes to process this kind of information. For the first couple of days after people receive such information they usually aren’t able to process it, not in any real way. They are likely to cry, be shocked, distressed, angry, sad, insulated and sombre or, even more likely, a combination of all these things. It may also be at this time that things like sleep, appetite and attention span change temporarily, with people feeling like they just want to be distracted and a bit disconnected from what is going on. Grief and the processing of life events rarely happen in any type of linear way, so people will oscillate through some or all of these emotions, often shifting from one to the other within moments or hours.

At these times, it is about moving through the emotions and letting them be rather than trying to do anything else. This process is part of your brain doing its work rather than anything to be worried about. But it will feel different to how you generally feel. Take the time you need to make sense of whatever you need to make sense of. This might happen multiple times through the cancer process, not just at the beginning — it might happen if you are given new information about the next lot of treatment, or a particular plan, or when you finish treatment, or if your cancer returns. And each time this happens it will feel as disconcerting and unfamiliar as the last. It’s worth reminding yourself that this is what is meant to happen, and it will come to an end.

I kept expecting that I would do something or feel something. Instead I just watched movie after movie and didn’t think about it at all.

Angelo, 56 years old

After the 72-hour window you are likely to have some more clarity of thought, and the shock will have subsided somewhat. This is also the time in cancer land where you may be more likely to have a bit of a plan forming for what happens next. This might be about having a treatment plan, or a discussion about further review by other people. This might be the time when your brain goes into practical and planning mode, which is one of the things that will largely help you manage through the next months of treatment, or whatever might come next. This is the time when, instead of being completely overwhelmed by the idea of uncertainty and panic, your brain will help you by shifting towards thoughts about how to navigate the next steps.

Behind the scenes

When someone is diagnosed it might initially feel like there is not much happening — perhaps they are getting sent for lots of scans and tests, and it might feel like an eternity between appointments where there is information being given.

Patients tell me that the time when it feels like nothing is happening is actually the time when lots of things are happening — you might just not know about them. At many hospitals and for most cancers there will be a group of people who will get together and talk about what is going to happen next for you. This is called a Multidisciplinary Team (or the MDT). This group usually includes oncologists, surgeons, pathologists, radiation oncologists, specialist nurses and psychosocial members. A member of the team (usually the person you have been referred to) will take your case to the meeting and seek the opinions of the others to ensure your treatment plan takes everything into account, and that all aspects of making sure you get the most effective treatment are covered off.

So although it feels like nothing is happening and you might even be worried they have forgotten about you, it’s much more likely that a plan is being discussed and organized.

I just felt so desperate for someone to tell me it would all be okay, I was reading everything I could find. In the end, I realized all it was doing was making me realize that I wouldn’t find an answer.

Liz, 50 years old

Beware of Dr Google: navigating through information

This can be the time when people start researching things like crazy, and I tell you, Dr Google has quite a lot to answer for.

We like to have answers and certainty, and you have just found yourself in the biggest pile of uncertainty you have likely ever encountered. Your brain will be flooded with thoughts about the future and what is going to happen next. I suspect thoughts and worries about whether you are going to die have started to be very present. So it makes perfect sense that in this uncertainty you would seek answers, right? And who can provide the answers? The internet. There are many difficulties with this, but here are the main issues:

Counterintuitively, the information on the internet about cancer and its treatments is often quite out of date.

The information you find isn’t likely to be relevant to you, as cancer and its treatments are so individual, based on factors that your doctors and treating teams will take into account and that you might not even be aware of.

As a general rule, people don’t talk about how great things are going when they talk about cancer on the internet. In all likelihood you will find yourself presented with a bunch of stories and experiences that are not representative of most people, and skewed very much towards how bad things can be.

If you put any cancer type and the words ‘survival’ into Google, it is likely that within the first pages and results, you will be presented concurrently with the word ‘death’. This is in no way representative of your actual survival statistics.

When people go searching for answers to reassure their brains, they actually start to spin out more, a bit like a car stuck in the mud trying to get traction with its back wheels. So just like the car stuck in the mud, instead of trying to get out, you might be better off stopping and waiting for help to arrive. In the instance of cancer, that help is likely to be from your treating team, who will tell you what you need to know and give you a plan.

Write down your questions

Just after you get the news about the cancer (or whatever other information you might be trying to process) and before treatment starts, it is likely you will have lots of questions and worries. People tend to have many questions for their doctors between appointments, but then forget them the second they are sitting in the room; they then leave the consultation kicking themselves that they didn’t get the information they needed.

In order to manage this, the simplest thing to do is to write some questions down before you go to your appointment and take some paper to write down the answers. Some doctors might be happy for you to record the consults so that you can listen back later, in case you miss the information. Also, if you can, take someone with you; they will probably miss some of the info as well, but at least with multiple sets of ears in the room the chance that most of the important stuff will be heard will increase.

The ways in which people process information and manage the time before starting treatment will look really different. It is about finding the way that makes the most sense for you. Some people manage by thinking endlessly about the cancer and what might happen next for them. But others might completely disconnect and appear not to be thinking about it at all. You might fall somewhere in between these two extremes, or it might change over time. In most cases, even if it appears that you aren’t thinking about it, you probably will be thinking about it, rolling it around in the background of your brain without you realizing. Lots of people around you are likely to have ideas about what you should be doing, but I would say it is worth listening to your own brain and body on this one.

And if you feel as if you are freaking out and don’t know which way is up, that is okay too.

TIPS FOR CARERS:Becoming a carer

I imagine it is pretty unlikely you thought much about what it would mean to be caring for someone with cancer until it happened. And it can be a really scary place. Lots of the carers I talk with tell me they feel really confused about how they feel about their role. They will generally tell me very quickly (and honestly) that they would not consider doing anything else other than being there and helping their person who is unwell. They will do anything they can to make sure their person is doing as well as they can, and that they are making it as easy as possible on them.

The other side of this equation, though, is that caring comes at a cost to the person doing it. So since the diagnosis, it’s likely you have felt some combination of the following:

• anxious and overwhelmed

• worried about the future (both of the person who is unwell, and your own)

• relieved at having a plan

• unable to sleep, or finding you have more worries in your mind than normal

• numb and empty

• scared

• guilty at thoughts you might be having

• irritable and grumpy at the person you are caring for

• distracted and unable to focus

• frustrated

• thankful for the small things

• thinking about your own mortality.

This, by the way, is not an exhaustive list. If you have felt things that aren’t on this list, that is okay too!

The most important part of being a carer is working out what you need to keep you going. If you are exhausted and burnt out, it’s not likely that you will be able to do any of the caring stuff. So, given that you don’t know how long this carer journey is going to be, it’s about the old adage of preparing for a marathon not a sprint. It’s keeping on doing the small things in your world that make a big difference — getting to the gym a couple of times a week, catching up with friends, talking about things that aren’t related to the cancer. If you keep these things ticking along, it helps to make sure that the fuel tank is always closer to full than empty.

2.

Normal

I just keep waiting for it all to be normal again — and it feels like it might never be. I just never realized how important all of the pieces of my pre-cancer life felt.

Fatima, 38 years old

You probably have a picture of what your normal is. And there is a reasonable chance that as a result of being diagnosed this will feel very different.

‘Normal’ is a word psychologists tend to shy away from — for many reasons, not the least of which is that we don’t have a very good measure of it.

The concept of normal becomes more complex in the world of cancer and or chronic diseases. When people come into cancer land it is often unexpected, and they find themselves in a time of turbulence. When this happens, the concept of feeling normal might feel very distant, as plans and day-to-day activities shift and change. The world that was very boring and predictable last week can look entirely different in the weeks following a diagnosis. Often the things that take up blocks of time in people’s lives disappear (like work, for instance) and from the outside looking in, their worlds could not look more changed. But perhaps that is now normal?

At the initial stage of diagnosis, your time is likely spent moving between medical appointments and procedures, with little time for anything else. You may have had to stay in hospital for a long time, which means that day-to-day normality will look entirely different. As a result, the craving for reconnecting with what your days looked like before cancer might start to creep in. You might even be having thoughts about how you could possibly manage this for the time the doctors are telling you treatment will take.

When treatment begins

When treatment starts, people can be unsettled and unsure about what to do with themselves. Will they be sick? Will they be able to work? Will they be able to keep doing what they want to do? If you ask doctors these questions they might answer in a vague way to start with, and this is not because they are being obtuse. For every treatment, there are some people who will fly through it, having almost no side effects, and they might suspect their doctors are not giving them the right treatment or medications. At the other end, there will be people who will be so unwell they cannot bear the thought of having any more. Although they may have some clues, the doctors don’t know at the outset which one of those people you are going to be, and in all likelihood, like most people, you will be somewhere in the middle.

But thinking about the concept of normal, it begs the question: how can you be normal if you don’t know what the treatment is going to do to you? Perhaps that is normal.

Survival instinct

Human beings are resilient creatures. One of the most powerful instincts we have is to survive — this has allowed us to make our way through some pretty intense times in our history, and it will also help you now. Often the first thing people say to me when I ask them about what treatment they might be willing to accept or what they are going to do next is very simply: ‘I will just do whatever I need to do.’