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.

How to Change Your Mind

There was another shooting this week.

This one was in the USA so it got lots of news coverage here. It could have been anywhere. All over the planet there are similar examples of violence and hatred. It feels like a vicious circle; a shooting happens and the response is anger and hatred, and the anger and hatred build and bounce until someone else snaps and the whole cycle starts again.

What to do.

If you’re a caring, compassionate person events like this one can leave you feeling hopeless. What’s to become of our species?

It’s an acute form of the same kind of distress we experience when we’re confronted with selfish, greedy people that don’t care about the planet or the other animals we share it with, or selfish, greedy people that don’t care about other people.

What to do?

I see friends responding with anger towards these types of events. There are cynical posts on Facebook, heart-felt expletives, conversations through teeth ground down by years of frustration.

And then an afternoon spent looking for something entirely different leads me to the work of Tania Singer. I was concerned about the way world events can be deeply distressing to highly empathic people. As an ex-police officer with a history of PTSD I now avoid the news. It’s just too upsetting. There’s so much research about how easy it is for us to ‘catch’ the emotional distress of others. So when I caught sight of this article in an issue of New Scientist I was drawn to it:

How Sharing Other People’s Feelings Can Make You Sick : New Scientist 2016

You’ll need to pay to read the whole article but if you’re the kind of person that’s deeply affected by distressing events I recommend it. Does this resonate with you:

Overdosing on the misfortunes of others is not just a problem for those in high-exposure professions such as nursing. All of us are vulnerable to catching the pain of others, making us angrier, unhappier, and possibly even sicker.

What was really interesting to me about this article was that the research done by Singer and her colleagues provides some great strategies for combating this distress. Teaching people how to meditate on loving kindness, and how to become better at observing their emotional responses to different situations can have a protective and healing impact.

Impressively, these processes can actually change your brain. Singer demonstrates using MRI’s how their program altered the neural activity in their research participants. She and her team have also demonstrated that these changes do more than just improve individual wellbeing; they also change the way we treat each other.

In tests that examine economic modelling and how people behave, Singer’s team established that meditation and other cognitive awareness practices shifted people’s behaviour from selfish to generous, from individualistic to cooperative.

If you’d like to learn more then here’s the link:
Tania Singer: How to Train Your Mind and Your Heart

This work relevant to anyone interested in social change and the evolution of our species beyond our current state. Compassion and extending loving kindness can change our brains and lead us to behave in more compassionate ways.

All those from religious traditions that believe meditation can change humanity are, in fact, correct.

The flip side of this is that a world filled with hate, cynicism and negativity has the potential to hard wire us for competition, greed and cynicism. When we give in to anger we’re doing to opposite of meditating on loving kindness and our brains (and lives) will suffer as a result.

I was on a course recently with a wonderful group of people that genuinely care about humanity and the planet. Even given this strong, positive bias I was surprised by the level of anger and negativity in some people. ‘The one percent’ came in for a lot of hatred, as did individuals seen as belonging to it. There was even some conflict within the group as some people decided who they did and didn’t connect with. Even here, there were the seeds of weeds that become violence.

Is it really as simple as loving everyone? Even the greedy and the violent, even the destructive and the selfish? And is that even possible?

There are reasons to practice meditation in any case. Evidence suggests it can protect your brain from the effects of ageing, provide you with a calmer, happier life and help you to overcome depression and anxiety. There are lots of free meditations available on the internet if you’d like to give it a try, or just do this:

  1. Find a comfortable, quiet place to sit. Hold your body in a neutral position – not too relaxed or too stiff. You want to be comfortable but you want to avoid falling asleep.
  2. You don’t have to close your eyes but many people find it helpful.
  3. Listen. What can you hear. Spend a few moments paying attention to the world around you.
  4. Now focus on your body and how it feels. Feel where it’s in contact with the chair. Feel your clothing against your skin.
  5. Shift your focus to your breathing. Notice that it’s cooler breathing in and warmer breathing out.
  6. Your mind will drift. This is normal. Be relaxed about it. Imagine that your mind is the sky and the thoughts that try to pull you away are like birds that fly across the sky. You can notice the bird and let it fly past. Bring your attention gently back to the sky.
  7. Now cultivate a feeling of loving kindness. Think of someone you love (If you struggle to think of a person then try a loved pet) and feel the emotion build up inside you. Imagine this feeling is like the sun, shining in the sky.
  8. Extend a feeling of loving kindness out into the world. Start with yourself. Bathe yourself in loving kindness. Then extend it to your close friends and family. Wish the very best for them; their health, their happiness and that they should also achieve peaceful and compassionate minds.
  9. Now extend loving kindness beyond the people that you know to the people that you don’t know. Remember this feeling is sunshine and it doesn’t discriminate; just like the sun it shines on everyone. If you struggle to shine loving kindness on some people, imagine them as small children or babies. Cultivate loving kindness towards all humanity.
  10. Now extend loving kindness to all life on earth. To trees and animals and microscopic life. To fungus and whales and chickens and lizards. Everything that lives can experience your loving sunshine.
  11. As you do this, your thoughts will continue to drift. This is normal. Just gently bring them back. You might like to imagine that your loving kindness is a river flowing out into the world and your distracting thoughts are like leaves on top of that water. Just let them float by.

You only need to set aside five or ten minutes a day to do this. After a while it becomes like cleaning your teeth. It’s just part of your routine. There are other ‘mindfulness’ practices like yoga and tai chi that will also help you to develop your meditation skill, but remember that it’s specifically a meditation on loving kindness and the practice of extending compassion to others that will have measurable benefits for you.

From personal experience, this practice has been extremely beneficial in helping me to live with post traumatic stress disorder. Part of my policing career involved child protection work, so you can imagine the challenges I face when it comes to extending loving kindness to all human beings.

But I do. Even to the offenders I’ve arrested. They were once children too.

Perhaps my greatest challenge has been to move beyond the anger and hatred that I used to feel for these people. They are not monsters, and treating them as monsters is only feeding the creature. I sometimes laugh at the realisation that The Beatles knew the answer and I’ve been hearing it all my life; Love really IS all you need.

I’m not saying it’s easy to avoid being pulled back into old patterns. When a shooting happens or I hear that the Great Barrier Reef is dying or I read that a politician has acted in a greedy, selfish way it’s simpler to just get angry and to launch into a rant. And then I remember that hate makes me part of the problem.

I sometimes wonder why adults that would not allow their children to bully other children with name-calling are perfectly okay with doing exactly the same thing to other adults via social media. Does calling Donald Trump a dickhead really make a difference? Or does it feed into the dynamic that allows him to exist at all.

One of the most common despairs of anyone passionate about the planet and the people on it is this: How do we change the minds of the destructive and selfish? It turns out that the answer was in our question the whole time: by changing their minds. Perhaps we need to focus on finding ways to engage these people in compassionate meditation. The research suggests it could shift their behaviour.

In the mean time, we can be the change we want in the world and work on refraining from the kind of behaviour that will make our brains like their brains. Could it be that simple? Maybe the next time you’re tempted to share an insulting thought or denigrate a public figure, pause and give thought to what you’re cultivating.

What’s most interesting to me about all of this new research is the extent to which it validates some very old philosophy. Buddhists have been teaching compassionate meditation for generations. The minds of Buddhist monks look very different under MRI analysis. They have changed their minds.

When events like mass shootings happen I am now able to avoid the anger and depression, not least of all because I recognise that these emotions feed the creature. Change is possible. We have the means for our own evolution. Spread the word.

Sleep Is The Great Healer

We spend a quarter to a third of our life doing it and yet there’s still so much about it that’s a mystery. Why do some people need nine hours of it and others thrive on only three or four? Why do we dream and what do our dreams mean? Why does the lack of sleep induce distress akin to mental illness? And the biggest question of all; Why do we sleep?

One thing has become really clear. Sleep is the great healer.

The extent to which it’s critical to our recovery was made clear to me in this excellent TED talk by Jill Bolte Taylor on stroke recovery where she explains how she rebuilt her brain. Prior to her stroke, Jill was a brain scientist so her insights are particularly fascinating.

Like many people she’s critical of the way hospitals are designed around staff rather than patients, with people being woken up at regular intervals to have their ‘vital signs’ checked. This is not conducive to recovery!

Most of us understand the importance of sleep but have you ever noticed how few people report sleeping well. It’s possibly the most important contribution we can make to good health, so here’s my collected wisdom on getting a good night’s shut eye.

When we remove those that sleep well for long enough and wake refreshed, we’re left with those that fall into one or more of the following groups:

  • Those that struggle to get to sleep
  • Those that struggle to stay asleep, waking once or several times a night
  • Those with a medical condition that directly impacts their sleep
  • Those that have been asleep for what should be long enough and yet wake feeling tired and unrefreshed by sleep.

Let’s start with the fourth group. If you’re in this category it’s worth having a sleep study done. The most common cause of un-refreshing sleep is apnea (which moves you up into the third group), a condition where you stop breathing intermittently while you sleep. In sever cases it can be life threatening. Even mild cases can have serious affects on your health. You can now get a sleep study kit that you take home overnight. You stick on the electrodes and climb into bed. A little suitcase records all of the information and you usually get a report back within a couple of weeks.

If you’re diagnosed with apnea there are a couple of options, including wearing a device that maintains air pressure while you sleep or having corrective surgery. My husband had surgery last year with great results and he’s now healthier, happier and has much more energy during the day. He couldn’t stand the CPAP machine but lots of people are huge fans.

There are other conditions that might put you in the third group including narcolepsy. These always need medical treatment and you should talk to your doctor about how to improve your condition. All of the other advice here about sleeping will help but some conditions really do need medical intervention.

If your sleep study shows that you don’t have apnea it might also give you some idea of why the quality of your sleep isn’t leaving you refreshed. It could be something as simple as not sleeping deeply enough and this can send you back to the bedroom to look for causes. Which is handy, because that’s exactly what we need to do for people in the first two categories.

Good conditions for sleep might seem proscriptive because we’ve all seen people that can apparently sleep just about anywhere. It’s true that most of us could fall asleep propped up against a wall if we were tired enough but it’s unlikely that the sleep we get would of a very good quality.

Sleep moves through cycles that usually last about 40 minutes. If something is regularly disrupting your sleep you’re not going to achieve the deepest levels of sleep that allow you to feel well rested. Obvious culprits include a snoring partner, a noisy environment or an enthusiastic nocturnal pet. Here’s a short check list of the ideal sleeping environment:

  • Dark; light on the outside of your eyelids triggers you to wake up.
  • Cool; the ideal temperature for sleep is around 18 degrees celsius which is much cooler than the 22 degrees we like when we’re moving around. If you’re in air conditioning it might be too warm (and too dry) to sleep well.
  • Quiet; even low level noise can disturb sleep. Most of us become accustomed to familiar noises which is why it’s possible for us to learn to sleep next to train lines or busy roads. We don’t stop listening when we sleep. Sudden and unusual noises will wake us up or disturb our sleep. Sometimes even the low buzz of an electronic device is enough to mess with our sleep patterns. Try moving the phone and charger or the electronic clock out of the bedroom.
    Unfortunately for some of us, our partner might be the source of the noise. In these cases it really is worth considering separate bedrooms if that’s possible. You can still spend time together before going to sleep or in the morning.
  • Comfortable; I think there’s a lot of hype and money in the mattress industry these days. Interestingly, most of the european population sleeps perfectly well on foam mattresses but in Australia we’re obsessed with the inner-spring. The best mattress is one that provides enough support to keep your back aligned along with enough padding to stop your bony bits becoming uncomfortable. I’ve avoided replacing my latex mattress by adding a topper to it in memory foam.
  • Clean; Dust mites, mould and allergens can all have a negative impact on your ability to sleep. Fresh air is also important and this can be a real problem if you can’t have windows open due to noise or live somewhere where the outside air is far from fresh. A portable air conditioner or dehumidifier is probably your only option here.
  • Un-interupted; I adore my cat. He comes in each morning for a cuddle. He doesn’t sleep with me because he thinks it’s a great idea to get up at 3.00am and run around the house like a deranged lunatic. When our sleep is interrupted it prevents us achieving deep sleep. Do what you can to protect your peace.

If you’re finding it hard to get to sleep or to stay asleep then start with your sleeping environment. A lot of people have solved their sleeping problems with some very minor adjustments, like black-out blinds or a thermostat adjustment.

If you’ve run a diagnostic on your bedroom, created the ideal sleeping environment and it’s still not happening for you then here’s a list of the most common things that disturb our sleep:

  • Overstimulation; we sleep best when we’ve spent the last hour or so of the evening winding down. Do whatever helps you to relax. The obvious exception to the overstimulation rule would be sex. Nothing beats an orgasm for facilitating sleep. Isn’t that good news!
  • Exposure to light in the blue spectrum; this signals our brain that it’s day time. Unfortunately computer screens and energy saving globes are both common sources of light in the blue spectrum. You can get an ap called f.lux that will adjust the light on your computer and you can also get ‘warm’ globes. Fortunately, exposure to light in the yellow/red range has the opposite effect so taking advantage of candle light and fire light will help you wind down.
  • Not enough sun; it seems odd that we need sunshine to sleep well but it turns out that eating our breakfast in the daylight is a great way to set our body clock. This is particularly important for people on shift work or those recovering from jet lag. When you wake up, go outside and get some sun. If your ‘morning’ occurs during darkness then you might want to invest in a light that simulates sunlight. This should improve your ability to get to sleep and the quality of that sleep.
  • Overindulgence; too much food or alcohol will disrupt your sleep. Alcohol might seem like a great way to unwind but it actually disrupts your sleep cycle and this (along with dehydration and altered brain chemistry) contributes to feeling hung over the next day.
  • Anxiety; a big favourite with those of us dealing with serious illness and this one deserves a book rather than a few lines. Luckily there have already been several great books written about dealing with anxiety. My favourite is Russ Harris’s ‘The Reality Slap’. Breathing exercises, meditation and yoga are also wonderful. Don’t just put up with it. It isn’t helping you to recover and it’s robbing you of your sleep. If it’s really bad then get counselling for it.
  • Pain; for many people it’s the great sleep thief. Fortunately there’s now been some great advances in managing chronic pain, including improvements in medication and a much wider range of medication-free strategies. Calming music, gentle exercise and meditation can all help with handling pain. So can hypnosis and counselling from a good psychologist (particularly one with ACT training). Massage and other ‘touch therapies’ are also excellent for helping to deal with pain.
  • Monkey Mind; I love this Buddhist term for the way our minds will jump around from one thing to another, never settling in one place. They recommend meditation and it certainly works well. Another great technique is to spend ten minutes listing all of the things that are occupying your thoughts. Write them down. Then you can put your head on the pillow and when ideas pop up you can thank your mind, remind it that you’ve already made a note of that for tomorrow and then relax.

My husband and I have both had periods of time where we kept waking up in the middle of the night, often at the same time every night. For me, a short passage in a book about the subconscious helped me to overcome this. It explained that when we spend all day talking about how we can’t sleep we’re actually programming ourselves not to sleep well. I started changing my internal dialogue to “I will sleep well and wake up feeling great” and I stopped talking to other people about my bad sleeping habits. This solved my problem.

My husband not only woke during the night, he then experienced annoyance and frustration at being awake. This, of course, made it much harder for him to get back to sleep again. Recently a friend shared an article about a bit of historical research that indicates it was once quite common for people to sleep twice during the night. It seems they would go to bed shortly after sunset, wake some time during the middle of the night, use that time to read or do bookwork by candle light, and then go back to bed for their ‘second sleep’. This has made a huge difference to Graham. He’s in the kind of job that he can dip in and out of and it’s often some sort of complex work problem that wakes him. Now he gets up, spends a couple of hours on it and then goes back to bed.

If you remember that sleep moves in roughly a 40 minute cycle then there’s no reason why we couldn’t break our sleep up into whatever sort of pattern works best for us. When my daughter was a baby the key to coping in the early weeks, when she had terrible sleeping patterns, came from a friend who suggested that I sleep whenever she slept. It seemed counterintuitive to me that grabbing a couple of hours here and there could make up for ‘a good night’s sleep’, but it did.

My other really interesting experience with sleep happened following my first surgery to remove the remaining tumour from my breast. I was in a shared ward with a woman that had been through reconstructive surgery. She was experiencing high levels of pain and was calling out with distress throughout the night in spite of the morphine pump. I put my headphones in and spent the night listening to calming yoga music and led meditations. I didn’t sleep. To my surprise I felt as refreshed the following day as if I’d had a really good sleep! This wasn’t a fluke. I now regularly use my iPod when I’m having difficulty sleeping. Sometimes I fall asleep and sometimes I don’t but I always feel great the next day. (Tip; get some of those ear buds that sports people use so they don’t fall out.)

Most of the techniques that help you get to sleep involve some kind of mindfulness, or some kind of activity designed to distract your mind from your everyday concerns (like counting sheep). Here’s just a couple of my favourites:

4 – 7 – 8 Breathing

Alternate nostril breathing

These are both beautiful yoga breathing exercises that help me to calm anxiety and relax my body. I’ve done both from the comfort of my bed.

It might seem strange, but I also find that doing pelvic floor exercises and counting them backwards from 1,000 helps. This is a simple activity to distract my mind and hey, who doesn’t need to do more pelvic floor exercises!

There’s a very popular yoga relaxation technique where you clench and then relax each part of your body, starting with your feet and moving to your calves, knees, thighs and so on, all the way to the top of your head.

If that’s all a bit much then just a simple meditation on the breath can help to get you ready for sleep. You don’t try to force your breath at all. You just observe it. Count as you breathe in and count as you breathe out. Now gradually start to increase you exhale by one or two counts.

My final tip is that if you’ve tried everything and sleep just isn’t happening then you’re better off getting up and having a glass of milk than staying in bed and fretting about it. Don’t reach for any electronic devices. Just have a drink of milk and then head back to bed and start again. If you can’t sleep, try to rest and relax rather than fretting over your lack of sleep.

Most importantly of all, remember that sleep is the great healer so if you’re finding you need more of it than usual during treatment or recovery just go with it. When I was having chemo I was sleeping up to 14 hours a day. During radiation treatment it was about ten hours a day. I’m now back to around eight or nine hours every night. Healing bodies need much more sleep, so snuggle up and don’t feel guilty about it.

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.

P1070559 P1070558 P1070557 P1070556

 

 

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.

Negotiating the Anxiety Tunnel

Having recently experienced the anxiety that comes with discovering a lump, waiting for a doctor’s appointment with a long weekend in between and then waiting for tests and results I’m now reflecting on what I call ‘the anxiety tunnel’.

Anyone whose ever faced a cancer diagnosis will be familiar with the tunnel. We travel through it when we’re first diagnosed and don’t know what that diagnosis will mean. We head back into it when we’re waiting for the results of biopsies, or pathology after surgery. Sadly, some people find themselves feeling like the tunnel is their new permanent residence, as anxiety about recurrence becomes a regular shadow over their lives.

I had a message recently from a regular reader of this blog. She wanted to know how I deal with the anxiety. She tells me that her distress in similar situations is so overwhelming that she’s desperate for any advice that might help. So here are my top ten tips for negotiating the anxiety tunnel:

1. Treat It Like The Flu
You know how when you have the flu you just expect to not be your best? I find it helps to have the same attitude to anxiety. I think of it as ‘anxiety flu’. I accept that until I get my results or reach the end point of my uncertainty, I’m just not going to feel my best. This is normal. I am not ‘going crazy’. Adjust your expectations of yourself for the next few days. You’re not going to be firing on all cylinders. What can you delegate? What can you postpone? What can you ignore? Like any bout of illness it’s also worth paying attention to what you put in your body. It’s okay to eat less if you’re not hungry. Drink plenty of water so you don’t dehydrate and try to make sure that what you do eat is nourishing.

2. Breathe
One of the first physical changes that most of us experience with anxiety is a tendency to hold our breath or to breathe quickly and into the top of our lungs. Sit quietly. Put one hand on your heart and one on your belly. Breathe deeply and slowly into your belly and feel it expand. Try to make your exhale longer than your inhale. Hold yourself gently, the way you’d hold a baby or a cuddly animal. Close your eyes if that helps. Just sitting like this for a few minutes can calm your nervous system.

3. Ask For Help
Our friends and family really love feeling useful. Let people know what they can do to help. You might have practical tasks that need doing. You might feel too anxious to drive and need a lift somewhere. You might need help with some of the other things on this list. Ask.

4. Repeat After Me
In the Hindu tradition, a mantra is a phrase or group of sounds with spiritual significance. Practitioners believe that by reciting a mantra you can bring about physical and spiritual changes in the body and in the world around you. You don’t need to be Hindu, or even spiritual, to try this technique. Essentially you either recite a phrase out loud or to yourself, repeating it until you feel more peaceful. The simplest mantra is ‘Om’ or ‘Oum’ and I do find that singing this out loud is very calming. I also have some favourite phrases that I repeat to myself. You can use any of these or come up with some of your own:
* This too shall pass
* It is what it is
* Let it go
* Where there is life there is hope
* You’re not dead yet!
Some people find the last one a bit macabre but I’ve found it useful to jolt me out of my downward spiral into imagining my own funeral.

5. Play Some Music
We all know music can have a profound effect on our emotions. I’ve put together a collection of music that either helps me to relax or lifts my mood and I use it to ease my passage through the anxiety tunnel. I like ‘Sacred Earth’ with their kirtan inspired repertoire for relaxation, along with just about anything composed to accompany yoga. To lift my spirits I’ve got songs I like to listen to or sing, particularly “I will survive”.

6. Exercise
Anxiety means your body gets flooded with adrenaline and cortisol. It’s these hormones that give you the jitters and keep you awake at night. Exercise is a great way to help your body process these chemicals and return to normal. A caution here; ‘boot camp’ styles of exercise (including those where your internal talk sounds like a boot camp instructor) will make things worse because they generate more adrenaline and cortisol. You need exercise that is a combination of strenuous and relaxing. Try a brisk walk in a beautiful location, riding a bike, dancing to music, yoga or lifting weights that are well within your capacity. If you’re a gym member and your local gym has a power plate (a vibrating thing that you stand on) these are reputed to help your body reduce cortisol. Worth a try.

7. If You’re Feeling Crabby, Get to Water
Warm baths, warm showers, a swim in the ocean on a hot day, a hot tub or spa bath, all of these have the potential to help you relax when you’re feeling crabby. If the weather is warm enough, one of my favourites is to float on my back in a pool and look at the sky. I remember that my mind is like the sky and my thoughts are like the clouds. They will pass.

8. Meditation and Mindfulness
It’s possibly the most common prescription for anxiety and the one least taken. It think that’s because even sitting still is difficult when we’re in the tunnel. Our minds are so noisy and busy that even the suggestion of meditation seems laughable. Of course, the times we most need meditation are the times when it seems the hardest to achieve! I’ve found some recordings that I really like and when I’m feeling anxious I know these will help. I’ll admit that I’m sometimes on day three or four of my anxiety before I reluctantly admit to myself that it’s about time I stuck the headphones in my ears. Even if you don’t feel like meditation you might like to try mindfulness. This is simply the act of being present, or paying attention to what’s right in front of you and living in the moment rather than worrying about the future or the past. There’s a lot of great mindfulness and meditation resources on the net. Just google to find something that suits you.

9. Decide How Busy You Want To Be
Some people negotiate the tunnel best when they are alone, or just in the company of a few chosen companions. Others are best distracted by company or activities. Which are you? It’s good to have a clear idea of how busy you want to be before you enter the tunnel. If you know you’re better off alone then clear the decks, batten down the hatches and give yourself permission to nest. If you need to be occupied then think about what kind of activities will help. Most recently I happened to find lumps just before a long weekend with two big gatherings scheduled. Both were a welcome distraction. Some people follow the ‘laughter is the best medicine’ recommendation and break out comedy DVDs or even children’s movies. If you’ve never seen ‘The Leggo Movie’ I highly recommend it. The big message here is that it’s okay to put yourself first in this situation, regardless of your prior obligations or anyone’s expectations. People will understand.

10. Contact
It’s usually when my husband opens his arms and says “come here” that I remember the profound effect that physical contact can have on anxiety. Just having someone hold you for a while can make a world of difference. When I’m anxious I appreciate all the contact I can get. I’ll sometimes pay for a massage or ask a friend for a hug. Even having someone hold my hands helps. Physical connection helps us feel safe and cherished. I think of all my strategies for dealing with anxiety, this one is the most effective.

A Warning About Flow
I’ve seen a lot of articles that recommend using whatever it is that puts you into ‘flow’ for dealing with anxiety. For those unfamiliar with the concept, flow is that experience of enjoying something so much that time just seems to fly by; you are so engrossed in the activity that it captures your full attention. Essentially this is another version of mindfulness. My concern is that if you attempt a favourite activity while you’re anxious there’s the potential for stress to suck the joy out of it. I love gardening. Sometimes when I’m anxious, being in the garden is a great way to anchor myself in the present and occupy my mind. Other times it’s a half-hearted distraction that adds to my anxiety as I find myself making obvious mistakes or becoming submerged in my own thoughts. If you find that a favourite ‘flow’ activity helps you to achieve mindfulness then that’s a great strategy, but be prepared to abandon it and try something else if it’s just making you more anxious.

So that’s my top ten.

Please consider it a menu rather than a prescription.

These are the things I find useful but they might not appeal to you. I’d encourage you to try some of them, even if they feel a bit awkward or odd. Reading about dealing with anxiety is a bit like reading about riding a bike. You’re not going to achieve anything until you actually have a go.

You might feel a bit challenged and out of balance at first but with patience and practice you’ll probably find that things get easier. I’d also encourage anyone that’s feeling overwhelmed by anxiety to seek the support of a professional psychologist or counsellor, particularly one with training in Acceptance Commitment Therapy (ACT).

You do not need to spend the rest of your life living in the anxiety tunnel. It is possible to return to having a happy and rewarding life.

If you can’t afford to pay for a therapist then contact cancer support organisations in your area or google phone and online support services. One of the positives of dealing with cancer is that there’s a lot of great support out there.

There is light at the end of the tunnel.

Six Months Post Mastectomy

WARNING: This post contains photos of my mastectomy scars. Skip this one if you’re likely to find that upsetting.

It’s the eighth of February today. That’s six months since my mastectomy.

Anniversaries take on a new significance when you’ve had triple negative breast cancer because our highest risk of recurrence is within the first three years. By the end of five years our risk has dropped to the same as everyone that’s never had breast cancer. It’s one of the few consolations for having a form of breast cancer that’s typically described as ‘more aggressive and with a worse prognosis than other breast cancers’.

I thought you might like to know how I’m travelling.

In a word, brilliantly!

My wounds are almost (but not quite) fully healed. I’ve been surprised by how long it takes. There’s a period of rapid healing immediately after surgery, as I expected, but then there is also a long, slow healing where the scar tissue gradually loosens up and improves in both appearance and sensitivity.

I still get strange electrical pings from time to time, but nowhere near as often as I used to. The tightness around my chest had greatly improved, particularly across my back. Following surgery I had a strange stabbing pain in the centre of my back when my bra fastening used to be. If I rolled my shoulders forward it was worse. That’s completely gone now. So is the mysterious stabbing pain on the outside of my upper arm near the shoulder. My surgeon, Kylie, described both as ‘referred pain’ and I’m happy to be over it.

How to describe the sensation across my chest? I think if you took something like a clay mask,  spread it over your chest and let it dry you’d be approximating the sensation. It’s a little tight, but not painful. Kylie warned me that my chest would get tighter over time and then it would ease. I’m at the happy end of the easing process with hopefully a little way to go.

As the skin has loosened away from the muscle it’s become more comfortable. You can see from the photos that there’s now a little bit of a droopy bit, particularly on the right hand side. I joke with my husband that my breasts are growing back. Actually, it’s a good thing because I now look less like a mastectomy patient and more like a naturally flat chested woman. I’m doing some hand weights to build up my pectoral muscles and to give me a bit more of a natural shape.

Having said that, I’m now completely comfortable with my flat chest. I’ve had a lot of fun replacing most of my old wardrobe. My two favourite ‘looks’ are a beautifully patterned cotton shirt over a singlet with long pants, or one of those box shaped dresses that sits just above the knee. I didn’t feel comfortable wearing shorter skirts before my surgery but now I enjoy putting my ‘yoga legs’ (as Graham calls them) on display. I’m accessorising with beautiful scarves and long necklaces which now sit beautifully thanks to my dolphin chest.

The only pain I have is from arthritis in my hips and shoulders (which I would have had anyway) and the peripheral neuropathy in my hands. They are very sore when I first wake up but improve quickly with my morning yoga.

My recent followup appointment was with my radiation oncologist, Andrew. He reminded me that I shouldn’t give up on the peripheral neuropathy and that sometimes nerves take a very long time to regrow. He suggests waiting a decade before calling it quits. This is great news because Rachel, my oncologist, has warned me that whatever I had twelve months after chemotherapy I would probably be stuck with for the rest of my life. It’s not really a big deal either way. I can still type, obviously, and last week I finally returned to playing my cello.

It’s made me very happy to discover that in spite of the numbness in my fingers, the need to completely reposition my instrument and the poor playing that results from two years without practice, I can still read music and make a beautiful sound. The challenge now is to return to daily practice. Like so many things, the cello requires a regular small investment in order to reap returns.

Andrew and Rachel are in agreement about what we thought was recurrence. It’s likely that this was actually DCIS left behind after the first surgery rather than new cancer. Why does this matter? Well, there’s a huge difference between a bit of old cancer still growing away and a whole new outbreak of the disease, particularly in terms of my long term survival odds. Although I was initially shocked at the possibility that my surgeon had made a mistake I now consider it to be serendipity, a happy accident.

You see, what we know, thanks to Kylie’s ‘mistake’, is that the cancer I used to have was resistant to chemotherapy and radiation therapy. It is almost certain that I would have needed a mastectomy at some point. Having it when I did meant the tissue removed was free of cancer and that greatly contributes to my future survival. You don’t get better margins than ‘no sign of cancer in this tissue’. If Kylie had removed a bit more tissue in the first surgery I would still have potentially lethal breasts with no guarantee that we would have caught the recurrence before it had spread to vital organs. Everything has turned out for the best.

I know Kylie still beats herself up over leaving the clip and some of the tumour bed behind. I’m glad I’m not a doctor. They are human like the rest of us and that means that, sooner or later, they will make a mistake. It’s unavoidable. A world where it’s safe for them to acknowledge that and talk about it is a safer one for all of us. It’s not a metaphor when people say that doctors often bury their mistakes!

It’s an interesting thing to come face to face with your own mortality. Last night I lay in bed thinking about a new blog called ‘We are all dying’ or ‘live like you’re dying’ because I now believe that when you really understand this, all the way to your temporary bones, life becomes richer, more precious, more meaningful………if you let it!

It still sneaks up on me at odd moments. My husband and I will be watching something on the television and laughing or joking about it. I’ll suddenly feel overwhelmed by my love for him and all he’s done and been since I was diagnosed. One day we will both be gone. That makes being here so much more beautiful.

When we’re intimate I sometimes weep with the wave of emotion that floods me. He touches these scars as if they were precious. You’ll notice that the photos are the right way around for this post because I finally felt okay about asking him to photograph them rather than using a mirror and taking them myself. The photos still shock me. From this side of the scars it’s easy to forget. Graham has just adapted to incorporate this new version of my body. He’s so grateful that I survived. He loves me.

My daughter returned from Europe and we have two precious weeks before she returns to university. I want to follow her around and embrace her randomly. I am so proud of her. She could have walked away from her studies without anyone criticising her because, after all, her mother had cancer. But she stuck it out. Her marks dropped but she still managed to pass two of the hardest subjects of her degree. Because the last eighteen months for me have been about surviving I haven’t been able to support her as I would like to have done. Now I can.

Her physical and emotional health have suffered. She’s working on being well. It’s been a shock to her to contemplate a world without me in it and it shows. I wonder if she’s realised that, like me, she is also temporary. Maybe that’s not a concept you need to come to terms with in your twenties although I know from the many young breast cancer survivors I have met that there are plenty who do. I pray for a cure. I pray for a future where she doesn’t have to fear my genetic inheritance.

My six month anniversary present was news from the Mayo clinic in the USA. They think they might have a vaccine that prevents the recurrence of triple negative breast cancer. I want to put fifteen exclamation marks on that. I still cry with joy when I watch this:

http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/

It’s too soon to call this a cure. They’re just starting trials and the trials may yet prove that the treatment doesn’t work, but hope is like rain in the dessert when you’ve had cancer.

So, as always, here’s the photos. This is what my body looks like after six months of healing and taking very good care of myself.

P1070195 P1070196
P1070194As you can see, the puckering to the left hand side is much better and I’m reasonably confident that this is going to keep improving. I’m seeing a massage therapist that specialises in oncology at least once a fortnight and sometimes more often than that. I highly recommend it. I’m also brushing my torso with my hands each night to help promote lymphatic drainage. The lymph system sits just under the skin so you really just pat yourself like you would a cat, with long strokes down the body. I can feel the lymph moving when I do this. It’s a mild tingling sensation. I’m hoping this helps me to avoid lymphedema, a common complication of cancer treatment.

The skin on the left hand side is also much better. This skin was damaged by radiation therapy and that’s why you can see such a marked difference between the two sides. You can also see the arc of a scar from my original breast conserving surgery above my mastectomy scar. I’ve been using macadamia or hemp oil, perfumed with essential oils, after my shower and that’s helped.

The question I get asked most often is “Will you be having reconstruction?”.  My answer is still “No”. I am very happy with my decision to do the best thing for my health and have the least amount of surgery possible. Even with all of the weight I’ve lost I still have a little bit of a belly. I’m very happy to have it sitting where it has always sat rather than having it surgically relocated to my chest, with all of the risks, pain and recovery time that would have involved. Just the thought of more than ten hours under anaesthetic was reason enough to avoid it but I’m also happy about not having any more scaring than was medically necessary.

Everyone makes their own decisions on reconstruction and, if you’ve decided to have it, then I sincerely hope you are as happy with your choice as I am with mine.

I’m still not inclined to wear ‘foobs’ (fake boobs). I don’t think there’s anything about my appearance that need ‘enhancing’. Of course, I’m also the kind of person whose happy with my prematurely grey hair, my glasses over contact lenses and my habit of saving makeup for very special occasions. There are some clothes that I know would look better with a bit of a mound. Perhaps, in time, I might have a look at something to go under evening wear but so far, so good.

Emotionally I’m feeling great. Thanks to Russ Harris and the ACT skills I’ve been practicing I now have an effective method for dealing with fear of recurrence. Losing 14 kilos since surgery (and only two of that was actually cut off me) has made me very happy but it’s really The Fast Diet that’s been a major contributor to my emotional well being. I am now in a healthy weight range because of a method that’s sustainable for the rest of my life. I can still enjoy great restaurants and the occasional take away without fear or guilt. The evidence on the benefits of this way of eating and the implications for those of us seeking to avoid cancer continue to mount. I am certain that I am doing the right thing for myself, my body and my family.

I know it’s still possible that the cancer could come back. Cancer is like that. But I don’t dwell on it. I enjoy my life. No, it’s more than that. I CHERISH my life, because I finally understand how precious it is.