I’ve published a book about fear of recurrence!

Regular followers of this blog will be aware that I’ve been working on a book for the last few months. I’m pleased to say it’s finally here.

Ta daa!

Free From Fear: Living Well After Cancer

It’s only available on Kindle at this stage, but that means I can keep the price low. It’s only $5 US but if you can’t afford that, keep an eye out for the promotion period in the next couple of weeks when it will be cheaper.

It’s been a great exercise in rebuilding my brain and overcoming the peripheral neuropathy that sometimes makes typing difficult. It turns out fingerless gloves are great for that.

I wrote the book for everyone that supported and encouraged me to keep writing. Thank you, particularly to those of you that suggested I write a book. Special mention to Michelle, David and Ricki for their unfailing support and praise.

My husband asked me last night what ‘success’ would look like, regarding the book. I told him that if it helps just one person to overcome that horrible fear that can follow us around once treatment ends then it will have been worthwhile.

My dear friend, Ricki, has reminded me that not everyone is out the other side of treatment. Some will be on treatment for the rest of their lives and some will head back into treatment. The book is for all of you too.

I hope I’ve made it easy to read and simple to apply to your own life. It’s full of all kinds of practical activities for dealing with fear, worry and anxiety. If you’d like a sneak peek then Amazon let’s you take a look inside before you buy it. Have a look and let me know what you think.

If you don’t have a Kindle device you can download the app for free from Amazon and load it onto your phone, tablet or computer. Click on the link above and if you don’t already have the ability to read a Kindle book the site should give you the option to download.

Thanks to all of you for your wonderful support and please help spread the work about the book. My next goal is to get it into the hands of the people that need it.

Love and gentle hugs

The Book Is Almost Here!

Hi everyone,

A bit excited!
Just sent the final draft of my book to someone so that it can be formatted for publication on Kindle.

And yes, I did finally make up my mind about a title:

‘FREE FROM FEAR – living well after cancer’

It’s got lots of practical strategies for dealing with that slow, creeping fear that the cancer is back as well as a whole section on living your best life. I was inspired by all the people that commented on this blog. You encouraged me to keep writing so I did!

I don’t have any grand ambitions. I’m just hoping to pass on the information that was so beneficial to me during treatment. This was also an activity that helped me to rebuild my brain after treatment, so I’m already very happy that I took the time to learn how to do it.

I’m on track to publish on Kindle some time in the next few weeks. That will keep the cost down. I’ll also be listing it in their promotional program so that it will be available for free just after it’s published. I’ll post here when that happens so that all the wonderful people that have sent me lovely comments over the last three and a bit years can get a copy without paying anything.

Thanks again to everyone that said ‘keep writing’, especially David, Michelle and Ricki.

Deep gratitude to my beloved friend and professional writer, Liz Swanton, for her practical and emotional support…..and for teaching me that that that doesn’t need to be there!

Meg McGowan

Do we get what we expect?

I’m in the void between writing and publishing; that place where you send your baby book out to a few trusted people for what you hope are some minor corrections and constructive feedback.

And then you wait.

Early indications are that it’s readable and useful. I’m still on track to publish either late April or early March. I still don’t have a name I like. I started with ‘What if the Cancer Comes Back?’ but figured most people wouldn’t want to buy it. I moved on to ‘Worried Sick by Cancer’. Same problem. I really want a title that’s focused on what the book will help you to achieve, rather than the problem it’s trying to address.

Having said that, popular wisdom is that it needs the word ‘cancer’ in the title. Something to do with algorithms and search engines and online potential. I really like ‘Fear + Less’.
It’s a book about fearing less. But is this too obscure? And it doesn’t contain the word ‘cancer’. All thoughts and suggestions are welcome.

In the meantime, I’m contemplating the extent to which we get what we expect. I had coffee with a friend that hasn’t been to yoga for a few months. She hurt her foot and ended up in one of those ski boot looking things that they use instead of a cast. She was telling me that when it came off, her whole leg was wasted and that she’s still regaining strength.

Then she said this: “It will never be the same. I’m always going to walk with a limp.”

Hold on a minute. You’ve only had the boot off for a couple of weeks and you’ve already decided that you’ve got a permanent disability. When I asked her why she thought this she replied that her doctor had delivered this miserable diagnosis and that it reflected her own fears, so she saw no reason to reject it.

I reminded her that post-mastectomy I was told I’d be likely to experience some permanent restriction to my range of movement. It was likely that taking two F cup breasts from my body, and the subsequent scars running under my arms, would mean that my arms just wouldn’t be able to do what I was used to them doing. A combination of scar tissue and nerve damage would see to that.

When I put my hands above my head I still need to slightly adjust my left hand to bring it to the same height as my right. That’s it. Oh, I sometimes have some tightness to the left side if I twist. I can also put my hands into a reasonable ‘reverse prayer’ (put your hands into prayer position and now see if you can do the same thing behind your back), and a couple of weeks ago I held something called ‘crow pose’ for a good five seconds.

Crow pose involves crouching forward with your hands on the ground, putting your knees on the backs of your upper arms and then lifting your feet. Google for impressive pictures. Essentially, I can support my entire body weight on my upper arms.

I’m a 55 year old woman whose had a bilateral mastectomy.

I’m also close to four years since my diagnosis and a few months further away from three since my surgery. Recovery did not happen quickly. I still have some issues with my hands and my feet thanks to the nerve damage from chemotherapy and I also get annoying pain across various parts of my chest on a regular basis. It turns out that this is common post-mastectomy. I don’t accept that either condition is permanent.

I think of all the various aches and pains I’ve had during treatment, and all the way back throughout my life. What an amazing capacity our bodies have to heal. I also recognise that some recovery takes much longer. I think we have a mindset that a few weeks is a reasonable healing time because that’s about how long it takes for a cut to heal.

Here’s the thing. Skin heals quickly. It has to. It’s the outside, protective coating for our bodies. Other things heal more slowly.

I was told by my oncologist that whatever nerve damage I had at the end of twelve months was probably my ground zero. Things weren’t going to get any better. Then the radiation oncologist told me that nerves can take up to eight years to regrow. Eight years! So let’s wait until then before writing off my healing capability. Certainly things have improved slowly but if I’d accepted the first diagnosis I’d be focusing on the pain and discomfort and not bothering with physiotherapy to improve my condition.

I’ve recently read about some interesting research into chronic pain. People that experience it have a different kind of brain. Researchers can put 100 people through an MRI and detect which ones experience chronic pain by looking at the architecture of their brain. Here’s what’s really interesting; they can also predict which people will develop chronic pain using the same techniques.

It turns out that to some extent, pain really is all in our minds! At least, it’s more likely in those of us with a particular kind of mind.

This is huge. About one in five people report either chronic or sever pain. It’s the reason pharmaceutical companies invest so much money in pain relief. It also explains why so many of these medications affect brain chemistry.

This might sound like your propensity to experience chronic pain is just some kind of genetic lottery, but it’s more complex than that. A whole range of things directly impact the way our brain functions. It’s no surprise that chronic stress can cause exactly the kind of changes that result in chronic pain. People with higher levels of anxiety or depression are also at risk. Some recreational drugs, including alcohol, are also linked to the same kinds of changes in the brain that result in chronic pain.

So what about the brains of people that are less prone? Of course those with a calm disposition, and good techniques for coping with anxiety and stress do well. (Don’t ever let anyone try to tell you that there’s a human being on the planet that never experiences anxiety, stress, grief or anger.)

The robust mind might also belong to someone that used to be prone to chronic pain. These people have usually altered the way they live their lives to reduce stress and anxiety. They probably practice meditation regularly and may also use yoga, tai chi, qigong or some other form of calming exercise routine. Track these people over time and their MRI’s will show physical changes to their brains. They don’t cope with a pain-prone brain by soothing it, they actually change the architecture of their brains to something less likely to experience chronic pain.

Of course, what this means is that even my ‘permanent chronic pain’ diagnosis is now up for argument. It’s just possible that with yoga and meditation I can overcome pain. It’s certainly highly likely that I can reduce it.

I noticed a few months back when a visitor complained of a headache that our medicine chest was full of pain relief medication. I had stocked up on it, having been told I’d probably be taking it for the rest of my life. I couldn’t be sure about the last time I took anything but it was certainly months ago. I didn’t decide not to take the pills, or to endure serious pain. My pain just hadn’t been strong enough for me to want a pill.

There are still times when I consider medication, and still very rare times when I take something, but that’s a long way from six tablets a day. I think my progress is due, to a very large extent, to my daily yoga and meditation.

I also think that part of it is due to my expectation that we can always improve our health. There’s no upper limit to how well we can be. Ultimately, a doctor’s diagnosis is just an educated guess, an opinion based on what they thing other patients in similar circumstances have experienced.

Personally, I’d like to see doctors trained to talk about possibilities rather than absolutes. This isn’t about putting a shine on a bad situation. It’s about being accurate. I’d like to hear them use language like this:

Based on what we know about your condition there’s a possibility that you may have permanent pain or physical restriction and there’s also a possibility that you may not. The body has an amazing capacity for healing and it can sometimes take years before it’s finished the job of recovery. There’s a lot you can do to improve your health and there’s no upper limit to how well you can be.

I suppose we’re still years away from meditation being recommended, in spite of the overwhelming research that proves it’s more beneficial and more effective than any pharmaceutical your doctor can prescribe. Ideally, I’d like to see practices that included a psychologist to teach people the techniques they need to live a fulfilling life. I’m sure that would have more impact on public health than all the pills in the world.

Regardless of where you are with your own recovery, please know that nobody has the right to steal your hope. Doctors that make proclamations about your limits are sharing their opinions, and while they are very well informed opinions they are not a sentence. When it comes to recovery it’s best to keep an open mind. We may be capable of more than we think. Certainly we will never get more than we expect.

A bit of a book

Hi everyone,
As most of you know, I’m busy working on a book about dealing with fear of recurrence. It’s a huge problem for most people that have survived cancer and the one I get asked about the most.

I’m still playing around with what to call it but at this stage the working title is ‘Worried Sick by Cancer’. I thought you might like a bit of a sample from the opening chapters, so here’s a taster:

The downward spiral of distraction

Just about everything I’ve read about dealing with fear of recurrence recommends distraction as a strategy. We’re told to go for a walk, watch a movie, play with the dog or bury our attention in a new hobby.

Some people distract themselves with healthy activities and others use food or drugs or risk taking to try and conquer their fears. Distraction is a ‘flight’ response to our fear.

All forms of distraction will work some of the time and there are some particular types of distraction that are really useful (more on that later) but for the most part, distraction isn’t a reliable response to fear.

Let’s go through this step-by-step.

You’re facing the fear that your cancer will come back and so you try to distract yourself. You go for a walk, watch some television, maybe phone a friend. If you’re like most people the fear comes with you.

You find yourself experiencing a cycle; a little bit of distraction followed by a little bit of fear. You notice the distraction isn’t working. This makes you even more anxious. You don’t want to be fearful and now you’re anxious about being fearful.

You stick with distraction and perhaps even change activities in the hope of stopping yourself from being frightened. It doesn’t work. Or it works just a little bit and then it doesn’t work. Pushing your fear away is like trying to hold it at arms length. It takes strength and effort and it makes your arm tired.

Sooner or later you need to stop trying to push that fear away and then it’s right back in your face again. So you have another go at trying to push the fear away. This is a bit like trying to hold it above your head or behind your back but you know you’re still going to get tired. You’re aware of the tension in your body as you try not to feel your fear.

Now you notice that the activity you’re using to distract yourself is not a source of pleasure. Using it as a distraction has sucked the joy from it. It’s as if you’re doing it with one hand while you use the other hand to push away the fear. You can’t give the activity in front of you your full attention because you need to make sure you keep that fear at arms length.

You notice that even though you’re trying really hard to distract yourself, the fear keeps creeping back into everything you do. Sometimes you get short bursts of time when you stop thinking about the fear, and then you notice you’re not thinking about the fear, which makes you think about the fear again.

You’re frustrated. You’re anxious about being frustrated and fearful about being anxious. The thought occurs to you that feeling this way isn’t good for your health and now you’re really upset! What if the fear of cancer is actually contributing to the risk of cancer!

At this point your fear might escalate, or it might shift into one of the many emotions that grow out of fear. These include the evil twins, worry and anxiety. Both recruit the phrase ‘what if’ to amplify your fear. You might also find yourself feeling angry, frustrated or annoyed. These emotions are a reaction to feeling out of control and fear is their foundation.

Does any of this sound familiar?

Most of us find distraction somewhat useful some of the time. You might be one of those lucky people that can just switch off, but for most of us, distraction is not an effective way to respond to fear.

Distraction is a bit like trying to pat your head and rub your belly at the same time. With practice, you can do it, but it’s not going to become easy or fun. You might develop some pride in your ability to do two things at once. That’s understandable. But you’re still caught in a slow, downward spiral.

Here’s why I think distraction doesn’t work for most people; Remember what I said about your mind trying to keep you safe? Distraction means you’re not listening. Your mind is sending you an important message about staying alive and you’re ignoring it. What does your mind do? It gets louder!

It’s possible that some of our ancestors never felt fear but they almost certainly got killed and eaten. The nervous and frightened ancestors had much better survival odds. We’ve evolved to feel fear and to pay attention to it. When we try to use distraction to avoid our fear it’s only reasonable that our very clever brain will keep ramping up the fear factor to get out attention. After all, it’s the reason our ancestors survived.

The most important thing to remember about your fear that the cancer will come back is this; your fears are not irrational.

You’ve had one of the biggest frights of your life. It was not imaginary. It was real. You’ve had several more frights along the way, probably involving test results, medical procedures and even the unexpected reactions of people. You have had a really, really big fright!

Your highly evolved brain wants to stop you from ever being that frightened again. It wants to make sure you never put your precious life in that much danger again. You’ve correctly identified a major risk to your survival and your mind wants you to pay attention.

Instead of helping you to deal with your fear of recurrence, distraction does exactly what it has always done. It momentarily takes your mind off something. But your mind doesn’t want to forget about cancer. Your mind wants to warn you. So eventually that fear is back up in your face.

Many people describe this as feeling like they are stuck. They get periods of time when things seem almost back to normal and then the fear sneaks up on them, or ambushes them when they’re not expecting it. The methods I’m going to teach you will help you to overcome this pattern.

For some, fear becomes a downward spiral. Each time they experience fear and an inability to cope with it, they repeat a pattern of behaviour. It might be that they reach for drugs or alcohol, experience a panic attack or find themselves feeling tearful or angry. Each experience of fear sends them back around in a circle.

Their mind establishes a kind of neural loop, and this pattern becomes a well-worn track. They now have a one-track mind when it comes to responding to fear and that track leads them to an increasingly frightening place. If this is you, I can show you how to fix this.

Please take some time to think about the extent to which you’ve used distraction to deal with your fears. How has that worked for you? Is it a reliable way to deal with worry or do you find yourself cycling back through fear again?

There’s nothing wrong with using distraction if you’ve found it effective. It’s just that most people don’t. I’ll teach you a better way of dealing with your fears so that you can return to the activities you enjoy for their own sake, and not as an escape for your mind’s legitimate concerns for your safety.

* * * *

M J McGowan


Hospital Food

My friend, Ricki, is back in hospital again for treatment. Today she posted a picture of her meal on Facebook. Rick is fortunate enough to be in the Seventh Day Adventist Hospital in Sydney, Australia (everyone calls it The SAN) and her meal includes freshly cooked fish and a delicious salad. Most of the items on her tray are reusable rather than disposable and everything is prepared on the premises.

What’s surprising about Ricki’s photo is how unfamiliar it will be to most people staying in a hospital other than the SAN. Even during my stay at the Mater, just down the road, I was shocked by the poor nutritional quality of the food. The food was reasonably tasty, but there were very few healthy options.

I wound up ordering double portions of their tiny side salad to get some leafy greens on my plate. The default option for most items was highly processed and single use packaging with lots of sugar. I could have flavoured yoghurt (full of sugar) but not plain yoghurt. I could have a white bread roll but nothing with seeds or wholemeal and certainly nothing gluten free.

Sweets were offered as standard with each meal and the catering staff seemed surprised when I chose not to have them. ‘Are you sure you don’t want the sticky date pudding?’ Yes, I am sure because I’m flat on my back for the next few days and not getting any decent exercise for a month or more so why are you feeding me sugar?

It just makes sense to me that if you want people to recover faster from treatment or surgery then giving them delicious, nutritious food will speed things along. There’s also the issue of the constipation that usually follows any surgery. How do they expect to get things moving with such an over processed menu?

Now that we understand how integral our gut health is to our physical and mental health, shouldn’t we be designing hospital food to repopulate our system with healthy bacteria? This just makes sense.

There’s also the psychological impact of opening the lid on yet another boring meal. If we’re in hospital and still able to eat then food is probably one of the few pleasures still left to us. Imagine the difference to patients if meals are something we can look forward to  and chefs get the opportunity to delight us.

Spare a thought too for the poor catering staff that serve this stuff up to patients. They’ll bear the brunt of all the complaints.

If food like this was a bit more expensive you could still justify it on the basis that people left hospital sooner. The thing is, anyone that works in catering will tell you it costs no more to serve up healthy food than it does to serve up processed meat and overcooked vegetables.

The desire for healthier food in the general population has seen a boom in companies providing fresh raw ingredients as well as packaged products. There’s also a much better understanding of the importance of nutrition and its impact on our physical and mental health.

The other worry with hospital food is all that disposable packaging. Often this is seen as ‘convenient’ but the truth is that the cost of all that packaging is built into the cost of the product. There’s also growing concern about the impact of leached chemicals from plastic packaging, particularly with foods that have a high fat content (like yoghurt and ice cream).

A meal constructed of half a dozen disposable packets, a plate of not very delicious food and disposable cutlery tells me, as a patient, that feeding me is an annoying consequence of my stay in your hospital. A tray full of freshly prepared, delicious food served on a real plate with a proper knife and fork makes me feel like a special guest. Simple.

And does anyone ever like eating their food with plastic cutlery?

When I asked about the menu at the Mater I was told that they were responding to what most patients wanted. Surely if what most patients want is an unhealthy diet then there’s a real opportunity to give them an experience of a healthy alternative. Giving people nutritious food might just help them to understand the difference between what they’ve been eating and what they should be eating, along with a personal experience of how much better they might feel with a few dietary changes. There’s a real opportunity for re-educating people with poor diets here.

This isn’t the first time Ricki has posted photos of her meals at the SAN. How wonderful to be in a hospital where the food is so good you want to show your friends. It begs the question; if the SAN can do this, why can’t everyone else?

Goal Setting

I’m now just a few months shy of four years since my diagnosis. (Yay!) I’ve recently been thinking about the whole subject of goal setting and why it matters.

Following my diagnosis and plans or goals I had in place vanished in a puff of fear. The world was suddenly uncertain. How could I plan for anything when I wasn’t sure I’d even be here. I was anxious about even buying tickets.

During treatment my goals were very short term. Survive (number one), stay as healthy as I could throughout treatment, stay as positive as reasonably possible while still acknowledging all of my other very human emotions (including fear, anger, anxiety and more fear). I also worked at caring for my husband and daughter as best I could and avoiding ‘it’s all about me’ syndrome. They were suffering too.

Now I’m well and my goals are starting to become a bit more interesting. I can plan for the future with reasonable confidence. I suppose there’s always going to be that shadow of a doubt in my mind about whether or not the cancer returns, but I don’t let it stop me from thinking about what I’ll do with my life if and when it doesn’t.

There’s a lot of information out there about setting SMART goals. You’ve probably seen some of it. The recommendation is that goals should be:

Specific -clearly stating what you’re hoping to achieve rather than being vague

Measurable – having something you can actually measure to know you’ve achieved it

Aligned with values – okay, this one usually reads ‘achievable’ but I think ‘realistic’ has that covered so I’ve changed this one. I think aligning our goals to our core values is the best way to make sure we don’t drift into places we’d rather not go. We’re also much more motivated to achieve something that aligns with our values.

Realistic – it needs to be actually achievable; I know I’m never going to be a world class gymnast for example. The trick with this one is not underestimating yourself.

Time bound – SMART goals have a finish date.

An example of a SMART goal would be something like this:

I will attend two yoga classes every week for the next six months in pursuit better health.

SMART goals are great. They help you to turn something like ‘I want to be healthier’ into a specific plan of action. But they are not the only kind of goal.

I’m also a fan of having a kind of vision for the whole of life. This isn’t about answering the great philosophical questions about life, the universe and everything. It’s about each of us deciding what we want our life to stand for.

Some of us have a really clear idea about this. I have a close friend whose life focus is all about family. I have another that want’s to leave the planet in better shape. And there’s no reason you couldn’t do both.

I think of these broader goals as being a kind of context. They give our lives a sort of general direction. SMART goals are the steps towards achieving those overarching goals.

I also think there’s something to be said for going with the flow. I don’t think you’d have much of a life if you did this exclusively, but there’s whole chunks of life that benefit from being uncertain, from being open to interesting possibilities and from letting circumstances take you to unexpected places.

Sometimes our goals can be self-limiting. Sometimes we can be so focused on achieving something that we forget about all of those activities that aren’t goal focuses. It can be fun and interesting to let chance, circumstances or other people direct our lives from time to time.

I appreciate that ‘letting go’ or ‘being creative’ might actually be a goal but there’s also something to be said for just waiting to see where the day takes you from time to time.

What ever kind of goal setting you do, it should be a source of inspiration rather than a rod for your own back. These models are meant to help us live better lives, not to punish us with unreasonable deadlines and harsh expectations. We should set our goals gently.

It’s also good to remember that we’ve been through a period of time when it was enough to just get through the day. And the world did not fall apart without us. Somehow, everything that needed to get done still got done. Or it didn’t, and that was fine too.

Perhaps one of the risks of recovery is that we’ll try to play catch up, or that we’ll be so mindful of the limited nature of life that we’ll try to cram in as much as possible. Getting the balance right can be a challenge. I think that’s why taking the occasional day to go with the flow can be so beneficial.

I am deeply grateful that I’m able to finally make plans for the future again. I’ve set some big goals and some SMART steps to achieve them. I’m also remembering to stop and smell the roses.




A brief update

Hi everyone.

Sorry for being quiet for so long. I have great news.

I’m working on my first book!

As part of my recovery from the cognitive damage done by treatment, I signed up for a few short courses on Udemy when they had their new year sale last year. One of them was on writing and publishing for Kindle.

I think it was actually called ‘How to write a Kindle best seller in 48 hours’.

Did I mention I signed up LAST year in January. Still, I’m being gentle with myself. I did manage to get through the course and really appreciated the fact that I could go back and replay any section of it as often as I liked. I still have unlimited access to the course which is going to be very helpful when I finally finish my short book and want to format it for Kindle.

If you’re battling the brain fog a short course in something interesting can really help. Udemy is great because there’s no pressure from the teacher or other students. Some teachers bombard you with emails for their other courses but it’s easy to unsubscribe from these.

This year I’ve signed up for singing lessons and some watercolour painting. I’ve promised myself that I’ll publish my book before I get to those.

You won’t be surprised to read that my book is about recovering from cancer. I didn’t want to write another ‘my journey’ style book. There’s a lot of those around. I’ve also done a pretty good job of recording my experiences with treatment via this blog and it’s all still here for anyone that wants to read it. (A big hello to all the recent subscribers!)

So I thought about what isn’t out there and decided to write a book on dealing with that cold, creeping fear that the cancer might come back, or that the cancer is back. I was fortunate enough to learn acceptance commitment therapy (ACT) during my treatment. At the risk of sounding like a bad internet advertisement, it really has changed my life.

A lot of the recommendations I see for dealing with fear of recurrence focus on distraction. I don’t think these are helpful (or perhaps sometimes a bit helpful but not an effective long term solution).

Through this blog I’ve had lots of messages from people that have come out the other side of cancer and want to know how to stop being so frightened. I’ve learnt some really good strategies for that, read everything I could get my hands on and even snuck into a short practitioner course with Russ Harris.

I’m just at the stage of polishing up the final draft and figuring out what I’m going to call it. I figure ‘afraid of dying’ is probably not a very catch title! Anyway, I think it’s probably going to be up on Kindle some time next month and by April at the very latest.

It’s just a bit exciting.

I know I’m unlikely to be a best selling author but there’s just a bit too much information in ACT for a blog post, and not everyone reads blogs. I think of this as being my way to give back after all the help I received during treatment.

The book won’t be long (because most of us still have some brain fog) and it won’t be expensive (because most of us are still recovering financially from treatment) but I’m hoping it will make a big difference in the lives of people living with that cold, creeping fear that cancer leaves in its wake.

Stay tuned and thanks for hanging in there. The people that read this blog, leave their comments and send me messages are the reason I keep writing.

Megan Joy