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.

* * * *

(c)2017
M J McGowan

 

Onward!

I’ve changed my tag line.

I started this blog just over three years ago. Back then, I optimistically tagged it ‘staying positive following a triple negative breast cancer diagnosis’. I was convinced that having a positive attitude would help me to get through the physical and psychological mine field that lay ahead of me.

It did.

But here’s the thing; I’ve come to realise that as important as positive thinking can be, it can also be a trap. Cancer treatment is hard. There are times when it’s terrifying, and really, really sad. There are days when just getting out of bed is an achievement. If we’re too focused on staying positive it can actually become a source of anxiety and stress; we wonder if not being upbeat is undermining our recovery and then we get anxious about our anxiety and we spiral down from there.

I’ve noticed that a lot of people seem to have become very wealthy by telling us to ‘be positive’. There were days during my treatment when my response to this was ‘I’m positive I’ve got cancer!’ There were also days when people would compliment me on being brave, or courageous or even ‘inspirational’. What concerns me about the positive thinking movement is the tendency to pathologise normal, human emotions and to make us feel guilty for having them.

That’s not to say that having a hopeful outlook hasn’t helped me. I’m certain that it has. I just think it’s important to acknowledge that part of being human is experiencing all kinds of emotions and none of them are bad. Some of them are uncomfortable, even painful, but that’s because they’re a reflection of how we’re feeling about some very difficult circumstances.

If something awful happens then sadness is part of how we get through it.

I sometimes wonder to what extent the depression epidemic is linked to enforced cheerfulness. Surrounded by upbeat social media and the highlights of other people’s lives are some people left feeling that any kind of sadness is some kind of failure? It the pressure to be outwardly cheerful while inwardly suffering part of the problem? I think it could be.

I’ve also seen a kind of haze around breast cancer, where there’s an expectation that our ‘journey’ will somehow enrich and reward us with new insights and a relentlessly upbeat perspective. Perhaps we need to acknowledge that while those of us that survive will certainly be changed, not all of those changes are cause for celebration.

I am happy to be alive. I’m also sad about the loss of my breasts and the ongoing health issues caused by treatment. This doesn’t stop me from having a great life but I think it’s part of what needs to be acknowledged. Perhaps instead of being positive all the time we should aim for contentment. This feels less forced. I am not happy all the time but I am generally content. I do have things that make me sad from time to time but they don’t overwhelm me.

I find that acknowledging uncomfortable feelings when they occur, making room for them and sitting with them for a while allows me to honestly process those feelings. I also find that when I forget to do this and try to run away from them they just seem to get stronger. I used to try to distract myself from uncomfortable feelings and now realise it was an excellent way to suck the joy out of whatever activity I was using for distraction.

The great irony of welcoming all of my emotions as normal and healthy is that, on the whole, I am much happier. Giving myself permission to be frightened or angry or frustrated has allowed me to recognise that all of my emotions are part of the richness of being human and that how I respond to those emotions is up to me. I can be angry without taking it out on someone else. I can be sad without that sadness dragging me into depression. Most importantly, I can have all of these emotions and know that they won’t give me cancer.

Stress is definitely bad for me but there are few things more stressful than trying to pretend to be happy when I’m just not feeling it.

And so I’d like to apologise to anyone that thought this blog was a prescription for suppressing any emotions other than happiness. Positivity is, for me, about developing a hopeful attitude to the future. It’s not about being happy all the time.

The most important thing I can do with an emotional response is to ask myself if it’s helping me to live the kind of life I want to live. In this regard, emotions like fear can actually be really helpful. Remembering treatment and being frightened about recurrence is a great incentive to me; it reminds me that I’ve made a lot of changes to my life, including a better diet, losing weight, daily yoga and generally being more grateful and mindful. I honestly believe these changes will improve my odds of survival.

And even if they don’t, they will improve the quality of my life, so they are definitely worth doing either way.

My tag line now reads ‘living well following treatment for triple negative breast cancer’. You can still go all the way back to the beginning of this blog and read about my treatment and all of the things that have happened in the last three years. My focus from here on in will be on living well and staying well. I’m hoping I can find plenty of interesting things to write about.

Three Years Today!

It’s official.

Three years ago today my husband and I sat in a small office at Breast Screen with a doctor we’d never met and a counsellor I’d seen twice before to receive the news that I had triple negative breast cancer.

I was pretty sure before the appointment that I was going to receive a cancer diagnosis. I’d seen the three (later four) suspicious cloudy blobs on the ultrasound and read the concerned face of the doctor taking the multiple biopsies.

I’d cautiously and reluctantly read up on breast cancer but I’d never heard of triple negative breast cancer. I thought they’d tell me there was no urgency and that I had several weeks to think about what I wanted to do next. Instead the doctor asked if I had my usual doctor’s phone number on me so that I could get a referral to a surgeon as soon as possible.

“The cancer you have is much more aggressive than most breast cancers. You need to regard treatment as somewhat urgent. I wouldn’t leave it more than two weeks.”

My father died of bladder cancer at 58. I used to imagine how odd it was going to be to reach 58 and realise I was now the age that Dad was when he died. Suddenly 58 felt like a worthy goal rather than a curious milestone. I was convinced that I was going to die.

I wandered my garden sobbing. Not since my Dad’s death had anything been so upsetting. This was a kind of personal death. No more dancing through life as if it was going to stretch on and on for decades. No grandchildren. Perhaps not even being here for my daughter’s marriage. All of the joys of my future, suddenly squashed under the weight of a cancer diagnosis.

In a cruel twist of timing, my daughter was in China at the time, holidaying with her Dad and his partner and the love of her life. We had already had days of painful discussion about whether or not to let her know that there concerns about my Breast Screen results or whether to wait until she came home.

On the one hand, we didn’t want to spoil her holiday but with social media we knew that keeping it a secret was going to be impossible. My close friends were supporting me through the weeks of anxiety. (I still wonder why I didn’t just see my doctor and have the biopsy done privately! I would have had the results in days and not weeks. Shock.) Zoe was bound to pick up on the fact that something was wrong and to be very angry about not hearing the news before everyone else.

So I made the hardest phone call of my life.

With the experience of a police officer whose given death messages I told her plainly and quickly. There’s no point drawing this kind of conversation out. It just builds anxiety. Of course she wanted to get on a plane and of course I convinced her there was nothing she could do here. But how I wanted to hold her.

The next day she posted to Facebook: “I know I should say something deep and profound here but all I can think of is ‘fuck cancer’.”

It was a gift. I’d dug my own grave and was stretched out in the bottom of it. I was convinced that my father’s DNA, the stress of my previous occupation and the usual collection of unhealthy habits had collided.I was going to die. And then with one angry sentence my daughter turned me around.

I climbed out of the hole and decided to fight. I decided to do everything I possibly could to beat cancer and to stay well. I spent hours on the internet researching triple negative breast cancer. I read books about cancer treatment and dealing with chronic illness. I started this blog. I hoped that writing about treatment would help me to stay on track (it did) and that perhaps sharing my experiences would benefit other women (it has).

It can be difficult to find information about triple negative breast cancer that isn’t terrifying, so I also started a Facebook page and started sharing information about current research, along with small chunks of inspirational thinking that helped me to avoid falling into hopelessness.

Back then I compared fighting cancer to climbing a mountain. I’ve got a better analogy. Cancer is like suddenly discovering that the path you’ve been walking on is unstable. It collapses beneath you and you slide, quickly and dangerously, down to the bottom of a deep, dark pit. On the way down you get injured. The extent to which you get injured is partly determined by how you handle the fall. The rest is luck.

When you get to the bottom you have to make a decision: Stay and die or try to climb back out again. You know the climb will be long and difficult. You know there’s a risk you could back-slide, or wind up right back where you started. You don’t know whether to go back the way you came (because at least you know the risks) or to try climbing out using a different path. So many choices and none of them are clearly better.

As you climb you find there are other people on the same journey. Some of them shout out advice to you but you don’t know if their progress is any better than yours. Some of them fall past you and you never see them again. Some days you feel like you’ve made great progress and other days you slide back towards the pit, terrified that the slide will go all the way to the bottom again.

Your medical team fly in from time to time and drop supplies. Sometimes these make the climb easier and sometimes the weight of them makes you want to sit on the side of the slope and cry.

Way up ahead, towards the light, you can see researchers building bridges and stairs. If only you can stay climbing long enough to reach them.

More people slide past you on their way back down. You want to call out encouragement to them. You want to tell them not to give up and to climb and to keep climbing, but part of you knows that everyone has to make their own decision. There are no right answers.

Finally the edge of the cliff seems within reach, but you’re so tired. This is when a lot of people give up. You know that. It looked closer than it really is. It seemed within a days reach but that was weeks ago. The people that love you are up there in the light, calling down to you. They’ve been there the whole time. Even when you couldn’t hear them. So you keep going.

One day at a time.

Just keep going.

And then the ground starts to become less steep and your progress feels more certain. There are days when you can actually start to enjoy the scenery. Recovery seems possible, even likely, but you can’t trust it. You keep going.

I don’t know when I made it over the edge of that cliff. Was it today? Was it a few months ago when my doctor ordered my three year scans early and I got the news I was cancer free? I don’t know. I feel as if I’m out of the pit now and back on solid ground. Life gets back to being about gardens and friends and good food and laughter. We talk about cancer as if it’s history.

But here’s the truth.

Once you’ve had that path drop out from under you it’s unlikely you’ll ever trust solid ground. It seemed safe the first time around, just before you fell into the pit. You know now what other people don’t; the path can always drop away at any time. This was always the truth. Maybe this is what they mean by ‘ignorance is bliss’. We would all prefer not to know this.

And so we all make a decision. Do we stay frozen by fear or set out on the path again?

Slowly, slowly I have crept forward over the last year, testing the ground beneath my feet. Eventually I decided I will never be able to trust it. I also decided that it’s okay. Not trusting it has made me exquisitely aware of the beauty in the every day.

I sit here typing, sharing my thoughts with people I will never meet, watching the sun warm up the winter garden. There’s a heavy dew this morning and the light is refracting. When my daughter was tiny we would watch the rainbow sparkles and call them fairies.

Today has music and ageing cats and Graham’s sourdough. Today has laundry to fold and firewood and theme music. Later, we’ll head out to lunch with my very adult daughter and her lovely partner to celebrate his birthday. We’ll catch up with his lovely parents and eat great food and laugh.

Life goes on.

 

I am grateful for still being alive.

I am grateful for all of the people that helped me get here.

Thank you.

All of you.

Whether you’re someone on my medical team that provided primary care, one of the many amazing nurses that supported me or one of the cheerful receptionist that greeted me (never doubt the difference you make).

I am grateful to all of the people that contributed to my care and recovery; to the woman at the wig library, to the staff at the local restaurant (Reef) that cheered me on, to the stranger in the waiting room that said “You look great today!” when I had no hair, to the young woman behind the Coles checkout that cried and hugged me. To everyone that smiled and didn’t look away. Thank you.

Thanks to all my virtual friends, whether through this blog or Facebook or the BCNA site. Your support and humour has often been a candle in the night.

To all of my real world friends, old and new, that hugged me and held my hand and drove me to treatment and took me walking and fed me and loved me. I am truly blessed to have you all in my life. And to those that stepped back or moved away, I wish you every happiness and please know I understand.

Special thanks to my yoga teacher, Emma, and my massage therapist, Maryanne. You have both made significant contributions to my physical and emotional recovery.

To Mum, for being stronger than I knew you were and for stubbornly refusing to accept the possibility of my death. I love you.

To Zoe, for telling cancer where to go and for being my single greatest reason for living. For continuing to study hard and live well when you had every reason to fall in a heap. Mummy’s better now, Sweetheart. I love you more than all the leaves on all the trees.

And finally to Graham. I don’t know how I would have coped if this had been you and not me but I couldn’t have done it better.

For starting all of this with “You are not your breasts and nothing is more important to me than keeping you alive and if you have to lose them then that’s what we have to do.” For being the only person that could make me laugh when I’d given up on laughing. For helping me to really understand why a good marriage is so much better than being alone.

Most of all for this:

The night before my double mastectomy, when I asked you if you wanted to kiss my breast goodbye, you said, “No. I’m over them. They tried to kill you.”

And the next day when they took the binder off to check my wounds and I had horrible tubes sticking out of me with bags attached to collect the fluid and even the thought of it all made me gag, you didn’t leave the room and you didn’t flinch.

You’ve never flinched. You’ve grieved and you’ve worried for me but you’ve never looked at me as if I was damaged. I’m just Meg to you. I love you. I didn’t think I could love you more than I did when all this started. I was wrong.

I was going to use today to wrap this blog up and say goodbye. I thought it might be time to move on, but I’ve realised that owning the whole experience and integrating it is part of my recovery. It’s healthy to keep hold of the whole experience and to move forward informed by it. Life can be better after cancer.

On to the next thing.

Love to all.

I am deeply and humbly grateful. Thank you.

Meg

How to Have a Really Happy New Year

It’s New Year’s Eve and friends are planning everything from full scale public events to quiet nights at home. We’re still not sure what we’re doing but the offer of something in between sounds appealing. A stroll to the waterfront to watch the local fireworks followed by a wander back to a nearby home for the Sydney edition on television.

I suppose at some point in the evening, whatever we decide to do, there will be inevitable question about New Year’s resolutions. I don’t usually make them. Research shows that they’re a waste of time and that most people have broken them before the end of January. It’s not that we don’t want to break bad habits, it’s just that it takes more than one commitment on one night every year to do it.

I’ve been thinking about successful alternatives to the resolution ritual. I like to pick a theme for the year. Last year (not surprisingly) I chose ‘health’ and I regularly revisited that goal, thinking about how I might incrementally improve on what I’d already done. This works well for me. It’s not a daily obsession. More a thread that runs through the year that I come back to on a regular basis.

My beautiful yoga teacher, Emma, held a class today and reminded all of us that in yoga, we make resolutions (or ‘set intentions’) every time we come on to the mat. Yoga also teaches that we should be kind to ourselves and to not push ourselves beyond our intelligent edge. That brought me all the way back to resolutions and the kinds of intentions that are usually behind them.

It seems to me that a lot of New Year’s resolutions are a mild form of self-bullying. We hunt for our deficiencies, give ourselves a good talking to and commit to doing better. No wonder we fail. Why does being healthy have to involve attempts to leverage guilt and shame? When did guilt and shame ever reliably motivate us to do anything?

What if, instead of beating ourselves up, we saw our new habits and practices as gifts we give ourselves.

The key for every new habit I’ve formed has been the joy it gives me. I love yoga, massage, my weekly gratitude posts, my connection to what I value and my commitment to building on my strengths rather than focusing on my weaknesses.

I am human and therefore fallible. I don’t always eat as much salad as I would like to, and I sometimes have too much refined or processed food although to be honest, this happens less and less as I become more aware of how unwell it makes me feel, but you see, that’s the critical difference. I’m not carrying around a list of things I’m ‘not allowed’ and calling myself a failure if I eat them. I could eat anything. I choose to eat well most of the time.

I’ve even come to enjoy my two fast days every week. Seems crazy, I know, but I enjoy a whole day without cooking and cleaning up afterwards and I love that I’m doing something proactive to prevent cancer from ever coming back.

It’s the same with exercise, drinking much less, building good relationships with friends and family, forgiving those that have upset me, doing all of the little things that add up to a joyful and happy life for me. I choose them.

I choose them because it took cancer for me to really understand that I am limited, time is limited and this is the only body I will ever have. (Thanks again, cancer). It also took cancer for me to understand that the greatest gift I can give to the people that love me is to take action that contributes to my health and happiness.

And that’s all I want from them too. I want them to joyfully make choices that help them to have a healthier life. To give themselves the gift of good health.

It’s also what I wish for all of you.

Thank you to all of you for continuing to read and share my blog. I got an annual report from WordPress telling me that enough people visited my blog this year to fill three concert halls. That’s amazing! It’s also very humbling.

So here’s my wish for everyone this New Year; please consider dispensing with the resolutions and deciding what gifts you might give yourself. You deserve to be healthy. Please shift your focus to being healthier and happier all through 2016 and leave the resolutions alone.

Happy New Year.

Chemo Brain And How To Treat It

My brain is back.

It’s like the sun coming out after a week of rain. Except it’s been raining for over two years. The return of my full cognitive function hasn’t been as sudden as a change in the weather, but the impact on my mood has been as dramatic.

It’s like discovering I’ve been living in just one room and that my home has three storeys. It’s like discovering I’ve been driving around in first gear and my car has five gears. With hindsight, I realise how badly my cognitive functioning was effected by treatment, although living through it I probably wasn’t cognisant of how impaired I really was (and this might be one of the few benefits of chemo brain).

I know this condition has a huge impact on the quality of life of so many survivors, so I thought I’d share my best advice for recovery.

First of all, understand that as far as researchers have been able to determine, it’s not exclusively caused by chemotherapy. While we all call it ‘chemo brain’ or ‘chemo fog’ the correct description is ‘mild cognitive impairment following cancer treatment’.

The causes haven’t been clearly identified but it’s a real condition, and it can be picked up with imaging technology. In one study, breast cancer survivors not only required a larger area of their brain to respond to a question, they used more energy to do so. In another, the resting metabolic rate of the brain was slower.

So the first bit of good news is you’re not imagining things. That inability to remember your phone number, the name on the tip of your tongue or the misspoken phrase are all manifestations of ‘chemo brain’. So is a general feeling of fogginess, mental sluggishness and difficulty learning anything new.

Coping with it usually involves implementing the kind of strategies they give people with early dementia; keep lists; use a calendar and a notebook; have one spot where you always put the things you lose regularly. All of this helps but what we really want is an effective way to hasten our recovery.

The really good news is that recovery is not only possible, most people find it relatively easy to achieve.

Apart from physical damage caused by treatment, chemo brain might also be caused by a range of other factors. The main suspect is anxiety, which can cause cognitive impairment all on its own. Hands up anyone that managed to get through cancer without feeling anxious. Depression is also a common after effect of treatment and yes, it’s also characterised by brain fog. If you suspect you’ve got ongoing issues with either anxiety or depression it’s important to discuss this with your doctor.

Vitamin D deficiency could also play a part because most of us had to avoid the sunshine for several months due to either chemotherapy or radiation. If you didn’t take your vitamin D supplements and treatment just got you out of the habit of sitting in the sun then an improvement could be as close as eating breakfast outside every day. Special note here to avoid supplements with calcium in them because they’ve been shown to be a health risk and to favour sun over supplements when you can because the type of vitamin D your body manufactures in response to sunlight is more beneficial.

If you’re experiencing serious mental impairment it’s also worth asking your doctor to give you a simple cognitive test to rule out dementia or any other illness that might be impacting your cognitive function. Don’t just assume it’s a result of treatment.

Having discussed chemo brain with a number of survivors there’s now been several that have overcome their problems by dealing with anxiety, depression or vitamin D deficiency so consider those first. Once you’ve ruled out other causes there’s still plenty you can do to reclaim your brain.

Here’s my top six recommendations for treating chemo brain. Many of these are things we should all be doing to improve our health and boost our immune system so adding them into your daily routine should bring a whole lot of benefits.

Please treat this list as a menu rather than a prescription. Choose what appeals to you and try it for a few months before you rule it out. And please share any other ideas you have about this condition.

  1. Fasting (aka The Fast Diet or 5:2 calorie restricted eating)
    What it is: an eating strategy where you limit your calories to 500 on two days each week.
    Why it might help: Fasting triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Even people that haven’t been through cancer treatment regularly report improved mental clarity when they adopt this way of eating.
    My experience: My cognitive function had been improving over time since I finished treatment but my biggest step forward coincided with switching to this way of eating. Of course it’s possible that this shift was coincidental so I’d be very interested to hear from anyone else that tries 5:2 or some other fasting regime and notices a brain boost. There are lots of good reasons for cancer survivors to consider fasting in any case.
  2. Yoga (Seriously, what isn’t yoga good for?)
    What it is: an ancient practice that links physical exercise with breathing and mindfulness
    Why it might help: Research shows that yoga has a profound effect on our physiology, including our cognitive function and our ability to deal with anxiety. Some of the benefits are undoubtedly associated with the increase of oxygen to the brain but yoga has such significant benefits over other forms of exercise that it’s clear they’re only scratching the surface of what’s going on inside us when we practice it.
    My experience: I’ve written before about the profound impact yoga has had on my ability to deal with treatment and my recovery. The benefits have ranged from helping me to deal with anxiety and pain to preventing nausea. Yoga helped me to restore my energy when treatment drained it and played a big part in my recovery from surgery thanks to my physical strength and flexibility.
    If you don’t find yoga appealing then exercise will also help you to recover your brain. I just don’t think it will achieve this as quickly or as well as yoga.
  3. Mindfulness
    What it is: a practice of focusing on the present moment and doing one thing at a time. Some people use meditation to learn mindfulness and others learn it by just focusing on whatever they are doing right now.
    I use both. Mindfulness for me includes listening to recorded meditations on my iPod and paying close attention to whatever I’m doing during the day. Even the washing up can be a meditation.
    Why it might help: Mindfulness trains your brain to still the ‘monkey mind’ that jumps from one thing to another. It also helps to reduce anxiety which might be a major contributor to cognitive impairment.
    My experience: Mindfulness has helped me to stay calm and to be present. My mind functions better when it’s calm.
  4. What you put in your mouth
    What it is: Attention to good nutrition, good hydration and avoiding those things you know aren’t good for you.
    Why it might help: Food and water are fuel for our bodies and the functioning of our bodies is directly linked to the quality of that fuel. We know that children show huge cognitive improvement when their diet is improved and that it also has an impact on mood and behaviour. Recent research into the addition of fresh vegetables into the diets of older people also demonstrated improved cognitive function. We are what we eat.Water is also critical to healthy brains. I noticed in hospital that my low blood pressure was immediately remedied by drinking a glass of water and our brains rely upon a good blood supply to function.

    Avoiding those things we know are unhealthy, including alcohol, highly processed food and high sugar food will also have an impact on our brains. People with allergies and food sensitivities will know that a small change in diet can mean a big improvement in health.

    My experience: My diet was pretty good before I was diagnosed. It’s even better now. I’ve significantly reduced all of those things I know are unhealthy while still allowing for the occasional treat. We predominantly eat organic food and I cook from scratch. I’ve cut right back on gluten after I noticed (thanks to The Fast Diet) that it made me tired and bloated. I still need to work on drinking enough water every day but I’ve improved on that score too. It comes as no surprise to me that the better I eat, the better I feel.

  5. Iodine Supplements
    Regular followers will know that I’d rather get my nutrition from food than supplements but based on my own research and an examination of my diet I determined that there was a possibility that I was iodine deficient. I don’t eat a lot of fish and while dairy used to be a good source of iodine, changes in farming practices mean it’s no longer used. The clearing of the fog has coincided with the introduction of iodine into my diet so it’s worth considering. Please let me know if you have similar results. As always, I strongly recommend you discuss any supplementation with your medical team, particularly if you’re in active treatment.
  6. Sleep
    Sleep is the great healer. When I was in treatment it was common for me to sleep in excess of ten hours a day. As my health has improved my need for sleep has declined but I still regularly get eight hours. Sleep is such an important part of recovery that I’m dedicating all of my next blog post to it.

Here are some other things you might like to try:

  1. Learning a language or a musical instrument
    If you’ve read any of the recent research into neural plasticity you’ll already know about this one. It’s long been thought that the only time when the brain was ‘plastic’ and able to create new neural pathways was during early childhood. Now it’s clear that we can keep building new connections in our brain for the whole of our lives. The quickest and most effective way to do this is to learn something new. Languages and music are particularly good, but learning anything new will help. A number of people have told me they’re finding ‘luminosity’ (a web site that charges you a monthly fee to play ‘brain training’ games) very helpful. You could also try puzzle books or free online puzzle sites.
  2. Get creative
    Creative pursuits are good for your brain and your mood. Pick something you really enjoy and dedicate a bit more time to it. It might be gardening or scrapbooking or making furniture out of scrap wood. It really doesn’t matter what you choose as long as it gets you making lots of happy choices. There’s a huge surge in the popularity of colouring in books for adults at the moment. I wish these had been around when I had chemo. They’re very relaxing and great fun, combining creativity with mindfulness.
  3. Take a holiday
    A break from your usual routine can be good for your brain. It doesn’t need to be expensive or involve air travel. It might just be a weekend visiting a good friend. The aim here is to find something restful and calming. If the thought of packing a bag and going anywhere makes you anxious then stay home.
  4. Have a cuddle
    Not that anyone needs an excuse, but cuddles are good for your brain. They increase oxytocin levels and this helps you to feel calmer and happier. You can cuddle a person or a pet. You can cuddle a partner a friend or a child.
  5. Have a massage
    It’s a combination of cuddling, mindfulness and increasing oxygenation. It’s the triple whammy of treatments when it comes to helping you restore cognitive function. You can also credit it with reducing anxiety, giving you a break from your routine and helping you to feel good about your body. There are now massage therapists that specialise in treating people going through or recovering from cancer treatment, so look up ‘oncology massage’ and treat this as a necessary part of your recovery (rather than an occasional treat).

Finally, don’t give up. There’s no upper limit to how well we can be. Recovery from chemo brain is certainly possible and most of the things that help us to achieve it are things we should probably be doing anyway.

One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

It seems like an appropriate time to post an update on my recovery and to reflect on what’s helped, what’s hindered and what needs to happen during the next year.

There will be photos, so if you’re squeamish about scars then best skip this one.

The short version; I feel great. Lately I’ve actually been feeling well, really well, for the first time since my surgery. I’m amazed by the body’s ability to heal and surprised at how long it’s taking.

If you’d asked me just after surgery how long I thought my recovery would take I would have guessed three months or so. Even one whole year later there’s still a little way to go before my body is done.

This is important.

There have been times during the last year when I’ve thought, ‘Is this as good as it gets?’ It seems to me that healing will happen for a while and then there will be a plateau where nothing much changes. I’ve come to think of these plateaus as the body taking a rest from the hard work of healing.

The whole experience has been an opportunity for me to take a hard look at my life and my habits. I suspect there are people whose recovery is passive. They wait and hope, trusting that whatever medical treatment they received will do all the work for them.

It’s been my long experience that recovery from anything needs to be active. We can support or hinder our recovery with some very simple choices, like what we put in our bodies, how much sleep we get and how much stress we’re prepared to tolerate.

I’ve been actively participating in my recovery.

I’ve cared for my skin, particularly the site of my surgery, by using a body oil after my shower. I’ve also taken care of lymphatic drainage from my left side by using gentle massage throughout the day. This area has had a lot of damage following three surgeries and radiation. While I haven’t had any signs of lymphodema, I see regular lymph drainage as an important preventative measure. I’ll be doing this for the rest of my life.

I’ve lost weight using The Fast Diet. My doctor recommended this because there are statistics showing that excess weight can contribute to breast cancer risk. Fasting also triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Anyone whose experienced triple negative breast cancer knows that we don’t have any of the new ‘wonder drugs’ available to us. Fasting seems like the best thing I can do to prevent recurrence. I’ll be doing this for the rest of my life.

Yoga has probably made the single greatest contribution to my recovery. I do at least one class a week (two when my husband joins me) and I practice at home every day. When I wake up in the morning I get dressed in my yoga gear. I have coffee and check my messages and daily schedule and then it’s straight into yoga before breakfast. I’m able to do things with my body that I couldn’t do before I was diagnosed. Of course the point of yoga is not to twist your body into increasingly difficult poses. Yoga is about integrating the mind, the body, the spirit and the breath. Yoga has helped me to love my post-cancer body and to feel strong and flexible, mentally and physically. I’ll be doing this for the rest of my life.

Massage has also been a big part of my recovery. I found a local massage therapist with specialist oncology training. As well as regularly helping me to move back into my own body she’s gently massaged my surgery site and this has greatly assisted in settling all of the nerve pain and helping me to regain sensation in that part of my body. It’s also deeply relaxing.

I was eating fairly well before diagnosis and treatment has been an opportunity to review what goes on my plate. We’re shifting towards more and more vegetarian meals. I rarely eat gluten any more and I feel better for it. I’m naturally eating less food thanks to The Fast Diet and the impact on my appetite. We’ve adopted the SLOW principles as much as possible; Seasonal, Local, Organic, Wholefoods.

I’m eating much less sugar and finding that I can’t eat anything really sweet anymore. I suspect this is because fasting has killed off the gut bacteria that trick my brain into wanting more sugar. The recent discoveries in relation to the gut biome continue to fascinate me. I’m sure we’re only just beginning to understand how important this work is for our future health. It’s certainly a strong motivator to avoid processed foods with all their additives and preservatives that prevent bacterial growth.

Thanks to a couple of visits with a psychologist with ACT (Acceptance Commitment Therapy) training and Russ Harris’s books on the subject, I’m now very clear about what’s important to me, what I value and what I want my life to stand for. To celebrate my one year anniversary I’ve enrolled in a permaculture course. There are those that would argue I don’t need this training because I’ve been practicing permaculture all of my adult life.

My friend Cecilia challenged me to ‘become a world famous permaculture teacher’ which is what motivated me to finally enrol. She’s clever. I don’t really need to become famous (nor do I want to) but I really do want to teach the skills I’ve been practicing for so many years. Permaculture is simply the best way to be human and the map for the survival of our species.

One of my favourite quotes has always been ‘Be the change you want in the world’. When I was a teenager I looked at a photograph of the planet from space showing all of the lights of civilisation and spontaneously thought ‘human cancer’. I was distressed by the damage we were doing to the planet and a sense of helplessness. For me, permaculture holds the key to healing humanity’s cancerous impact on the planet. It’s probably going to keep me well too.

So here’s my latest photos.

As you can see, I’ve come a long way since surgery.

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My chest has gone from being almost completely numb to almost completely recovering sensation. I still have numbness along the scar lines and there’s an area of nerve damage above my original surgery scar (that’s the little arc high on my left side). Nerve damage feels like electricity under the skin. It’s continued to improve with massage and I’m hopeful that it will eventually disappear.

My chest still feels a little tight, as if I’ve got a large sticking plaster on it, but this has improved and I believe it will also vanish in time. For most of last year I felt like I was wearing an undersized bra (how ironic) and the tightness extended all the way across my back. That’s resolved now and I only have my chest to deal with. Yoga and massage both help with this.

I still need to remember to keep my shoulders back and to hold my body up. My doctor tells me it’s common for mastectomy patients to develop a stooped back and rounded shoulders. I suspect this is a combination of relieving that sensation of tightness and, perhaps, embarrassment at having no breasts. I regularly roll my shoulders up and back, particularly when I’m at the computer.

My neck has taken a while to adjust to the absence of two F cup breasts. Removing close to two kilos of weight left my neck and shoulders in a state of shock and once again, yoga and massage have helped. A friend showed me this neat trick; point your index finger at the sky; now bring your finger so it touches your chin and the tip of your nose; push back until you feel your neck is back in alignment. You can also push your head back firmly into a pillow when you’re in bed, or the head rest when you’re in a car. This simple exercise has had more impact on my neck pain than anything else.

As for the other side effects from treatment, I’ve also seen big improvement. I rarely experience any peripheral neuropathy in my feet. I still wake with sore hands but they warm up quickly. I need to be careful with any activity where I hold my hand in the same position for any length of time, such as drawing or sewing. My hands tends to cramp up and become painful. I haven’t given up on my body’s ability to regrow nerves. While one doctor told me I’d probably be stuck with whatever I had at twelve months post chemo, another said it can take six years for nerves to regrow. I’ve already had improvement since my twelve month mark so I’m going with option B.

I have a mild hum in my ears. This is probably also chemo related nerve damage but it could just be age. My Mum has age related hearing loss. It’s important to remember that not everything going on with our bodies is related to treatment. I don’t have that awful metallic taste in my mouth any more and I think this is also a form of peripheral neuropathy. Food tastes wonderful again, particularly straight after fasting.

I wonder to what extent the fasting has promoted healing. The science indicates that it should make a difference. In early days, I certainly noticed more rapid healing following a fast. I’ve observed that if I have any kind of skin blemish it’s usually completely healed after fast day.

As you can see from the photos, the radiation damage to my skin has greatly improved. As well as the circulatory benefits of massage, I think the regular application of rose hip oil has made a huge difference.

As you’ve probably already guessed, my mental state is great. People recovering from mastectomy are, not surprisingly, at high risk of depression. I’m very grateful that the care I’ve received and the work that I’ve done have helped me to avoid that particular complication. In many ways, depression is a worse disease than cancer and certainly at least as deadly. I think avoiding depression has involved a combination of things but particularly the information about ACT, practicing ACT and the benefits of yoga.

The most significant contribution to my state of mind has been the love and support I’ve received from so many people. Special mention must go to my beautiful husband who has continued to love and cherish me through all of this. I’m still beautiful to him. It’s an enormous advantage to have someone like that in my life and I grieve for those women that go through this on their own, or whose partners leave them during treatment.

I no longer experience ‘chemo brain’. I feel as mentally alert as I ever did. I’m also calmer, happier and less stressed than at any other time in my life.

I’m now taking stock and asking ‘What else can I do to continue with my recovery and to improve my health?’ I’ll also be doing this for the rest of my life. I believe that there is no upper limit to how well I can be. To put it another way, no matter how well recovered our bodies seems to be, there is always more we can do to improve our health.

Thanks to everyone that’s been following the blog and the accompanying Facebook page. Special thanks to those that have taken the time to let me know that something they’ve read has helped them with their own recovery. You’re the reason I keep writing.

Go well. Live well. My best wishes for your continuing recovery.

My Top 13 Surprising Things About The Fast Diet

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Regular readers will know that I’ve been following The Fast Diet for some time now. Here’s the original post I wrote about it back in January.

https://positive3neg.wordpress.com/2015/01/19/is-there-a-fast-way-to-reduce-cancer-risk/

I’m all for people feeling comfortable in their own skin, whatever their size, and I think the whole diet industry conveniently ignores the data that says it’s your fitness that makes the most difference to your overall longevity, not your weight. I have friends that easily fit a size 14-16 who are very fit and healthy.

The problem for those of us with a high risk of breast cancer is that being overweight HAS been conclusively linked to higher risk. Maintaining a healthy weight is one of the best things we can do for our bodies. For those of us in the triple negative category it’s one of the best preventative steps we can take. There are no preventative medications available to us.

The trouble is that most diets are so misery-inducing you’d rather just eat what you want, be happy and carry the weight. I used to feel that way. I was never seriously overweight but I was carrying about 16 kilos more than I needed. Like most people I’d go through that cycle of deciding to diet, watching the weight creep off and then deciding that if I had to live that way I would rather be dead. (Of course I wouldn’t REALLY rather be dead! I smile now at how frequently I used to use that expression without really understanding what I was saying.)

Enter The Fast Diet. It’s based on good science, it’s become popular all over the planet, and it’s helped me to lose all of the weight I want and to keep it off. I thought it was time to give you all an update on the really surprising things about this way of eating.

I tried to limit this to ten things but I couldn’t.

So here’s the my top 13 surprising things about The Fast Diet:

1. It’s easy
Every other diet I’ve ever been on has been hard work. I’d be measuring portions or counting points or keeping diaries or craving ‘forbidden’ foods for months and months. I’d feel deprived and resentful. There are no banned foods on The Fast Diet and you only count calories on two days each week. The rest of the time you just eat a healthy diet with the occasional treat. Truth be told the first two weeks were hard work, but only on the two fast days. By week three it was just my new normal.

2. I can eat pizza!
I love pizza. I love melted cheese and crunchy pizza bases and everything that goes with it. I don’t want pizza every night but every so often I really want pizza. No problem. I’ve bought it. I’ve eaten it. I’ve still lost weight. We also love to eat out at fine dining restaurants and cheap, cheerful cafes. No problem. I can see why they call this ‘the foodies diet’. I have still eaten a healthy diet most days of the week but its so wonderful to enjoy good food without worrying about my weight.

3. I can’t eat pizza!
Well, I can, but I can’t finish it. One of the surprising things about this diet is that my appetite has been reduced on all seven days of the week. I’m just not as hungry as I used to be. I don’t know if this is because fasting teaches you that hunger is not life-threatening (and I suspect there’s some part of our lizard brain that makes us panic when we’re hungry), or because our stomach gets smaller and feels fuller with less food. I used to devour a medium sized pizza without a second thought. Now I really want to stop at half that amount. The great thing is that this is a choice. I’m full and I don’t want any more. It’s not because someone else is telling me I can’t have it. Bliss.

4. I don’t crave sugar or bread or biscuits….
I’m one of those people that used to get huge carbohydrate cravings. There’s been some recent research into the gut biome that’s discovered a bacteria that thrives on sugar. It can signal our brains and trick us into thinking we’re hungry, and that, in particular, we are hungry for the food it needs to survive. I suspect fasting either kills or reduces this bacteria. In any case, I no longer get cravings and I actually find myself not wanting sweet things. I know, right! I can walk past a packet of Tim Tams without a second thought. It’s a miracle!

5. I have more energy on fast days
I had expected to feel a bit lethargic on fast days and I’ve been really surprised by how energetic I feel. Once again, the first couple of weeks were hard work and I did feel weary. I had a headache and even some low level anxiety. But it passed. Now I find I have so much energy on a fast day that I need to plan to go to the gym or do some heavy work in the garden, or I’ll have trouble getting to sleep.

6. I need to drink a lot more water on fast days
I’m pretty sure the headaches in the first couple of weeks were at least partly due to dehydration. I also suspect that those sugar-eating bacteria were ramping up the chemicals as the fasting killed them off. I’ve realised that we get a good portion of our hydration from the food we eat, so on fast days I need to drink a lot more water. It’s also a great way to deal with hunger.

7. Hunger has an upper limit 
I thought that fasting would mean getting progressively hungrier as the day went on. I’m surprised to find that my hunger hits a peak at around 10.00am and then just hovers there for most of the day. I have a bit of a spike around 3.00pm to 4.00pm and if that’s really bad I’ll eat an apple and deduct those calories from my evening meal. Most of the time a drink of water and something to distract me will see the hunger pass really quickly.

8. There is no failure
If you’ve ever ‘been on a diet’ then you’ve also been off a diet. They’re notorious for making us feel like we’ve failed. I think the key to a lot of weight loss programs is that they get the credit for all the weight you lose and you get the blame for all the weight you don’t. The Fast Diet means eating normally for five days a week and just restricting your calories for two (or some other combination; see below). Unless you’re prone to binging or your diet is always unhealthy then I really think you can just eat normally for five days a week. Your appetite will naturally reduce over time. The best thing for me is that if I ‘come off’ the diet today I can just start my fast again tomorrow. And there’s always next week. I tend to bank fast days if I know I’m going to lunch with friends on a day when I’d usually fast but you can just as easily move the fast to one day later.

9. It’s really flexible
Once you understand the basic principles of fasting you can adapt it to suit what works best for you. My mum has lost a lot of weight just by eating her breakfast later each day and making sure she has nothing after her dinner. By narrowing the window of time during which she eats she’s effectively fasting each night. I’ve sometimes done two days in a row because the research on the anti-cancer benefits has focused on this type of fasting. Some people prefer to eat most of their calories in the morning and some prefer to eat them at night. Some split them into two meals. The surprising thing is how flexible this style of eating can be and how easily you can adapt it to what works best for you.

10. Fasting helps you learn what your body wants
When you’ve spent a day fasting you really notice how your body reacts to whatever you eat next. I’ve noticed that rice makes me bloated and that too much onion gives me heartburn. Because my hunger has been significantly reduced, I’m paying a lot more attention to making sure the food I do eat is nutritious. I’m back in touch with my body. It’s a good feeling.

11. Fasting has unexpected benefits
My eyes look bright and my hair is thick and shiny. Usually when you’re my age and you lose a lot of weight you expect it to age your face, but my skin looks great and I haven’t gone all wrinkly. I suspect this is because fasting triggers autophagy, the body’s ability to clean up dead and damaged cells. I’ve noticed that cuts and blemishes heal faster on fast days. I also noticed big steps forward in the healing of my mastectomy scars. It’s likely that fasting is also helping my body to kill off any potentially cancerous cells. It would be worth doing for that alone, even if I didn’t lose weight. This style of eating is also slightly contagious. Apart from my mum’s weight loss, my husband has also dropped an easy ten kilos, reducing his hereditary risk of heart attack.

12. I can eat this way for the rest of my life
The single biggest factor that has caused me to come off a diet in the past was the overwhelming sense of misery I felt, even if I lost weight. I once achieved the same weight I am now through Weight Watchers and then sustained it long enough to become a lifetime member. I was resentful of matchbox-sized serves of cheese and palm-sized serves of meat. I spent hours each day calculating points and feeling deprived when I couldn’t eat what I wanted and stay within my limits. I felt cheated by the realisation that the more weight I lost the less points I’d have so the less food I’d be allowed to eat. What’s surprised me about fasting is that I have easily lost weight without feeling deprived and I’ve kept it off. Some days I get to lunch time and realise I haven’t eaten yet. Incredible! I’m much more aware of the difference between thirst and hunger and I’m much more inclined to eat just enough rather than over eating. These are all of the things that Weight Watchers was trying to achieve but without the misery and constant feelings of deprivation.

13. I am really, really happy
I think some of this has to do with conquering sugar cravings without even trying and the beneficial effects that has on my blood sugar. I also suspect that not having nasty little bacteria messing with my brain helps and I am overjoyed to be at my target weight. But mostly this is about finally breaking out of that cycle of self-bullying, deprivation, anxiety and misery that is traditional dieting. I love food. I love eating good food. I don’t want to spend the rest of my life feeling anxious about what I put in my mouth. I don’t want to look in the mirror and insult myself for not being ‘strong enough’ or ‘committed enough’. The biggest surprise for me has been the way this form of eating has given me a great relationship with food and eating. I’ve lost 16 kilos and I’ve kept it off easily. I’m naturally choosing healthier foods because that’s what I feel like eating.

Oh, and did I mention that I’m also reducing my risk of cancer?