The Cancer Companion

How to Navigate Your Way from Diagnosis to Treatment and Beyond

Toni Lindsay, Dr Toni Lindsay

• Publisher: Exisle Publishing
• Year: 2021
• Print ISBN: 9781925820805
• eBook ISBN: 9781991001030
• Topic: Medicine
• Subtopic: Diseases & Allergies

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.

Part 1

On treatment

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 outs...

Table of contents

• Cover
• Title
• About the author
• Dedication
• Contents
• Welcome
• Part 1: On treatment
• Part 2: Off treatment
• Part 3: Living with advanced cancer
• Part 4: The psychology part: How can you manage all of this?
• Some final thoughts
• Acknowledgments
• References
• Index
• Copyright