Do we get what we expect?

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

And then you wait.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Eagles

I decided to be an eagle when I was thirteen years old.

I grew up in a home surrounded by books. We read a lot of fantasy and science fiction. I loved stories about people that could transform themselves into animals, or inhabit the minds of animals. I also loved cats. I spent most of my lunch breaks in the first year of high school in the library, taking advantage of an amazing piece of new technology called a photo copier. I used my pocket money to make grainy black and white images of every kind of cat.

I got a part time job working at a coffee shop in Terrigal. A lot of the customers were rich people on holidays. They were very rude. They wanted the cinnamon sugar all the way to the edges of the toast. They wanted the chocolate powder on top of the coffee but not on the saucer. My boss would say “Rise above it.”

I read two books, one after the other. The first was about totems and native americans and how they gained wisdom from their totem animal. The second was about an eagle, written from the eagle’s point of view. Until then, I’d always thought that if I could be any animal I would be a leopard or a tiger. I decided, secretly, that my totem was an eagle.

If I was bullied at school I would rise above it. I was very fair skinned with dark hair and glasses, living in a part of the world where everyone lived on the beach and had suntans and blonde hair. I didn’t know it at the time, but I was also nerdy. I wasn’t badly bullied but I was bullied. Instead of responding like a rabbit in the headlights of an oncoming car I would imagine myself flying, high above the school to an eerie where I could look back and realise how tiny and insignificant the humans were. I wore strange clothes with my school uniform (friends remember the splendid multicoloured crocheted poncho). My glasses meant that I needed to turn my head to see properly, like an eagle.

I dreamt of flying. I would wake up with stiff shoulders. I would lay on my stomach and imagine huge wings on my back.

As I grew older I became better and better at seeing the big picture. It became part of what made me a valuable employee. As a police officer I was the one that found missed details at crime scenes, asked left-of-centre questions in interviews and found strategic ways to build a brief of evidence. When I moved into management I was the kind of leader that valued everyone’s contribution, I understood systems and how they interacted. I understood leverage and how a small change in one area could result in big changes in another. I knew the difference between real change and the statistical blip that so often gets used to declare operational success. People said I often had ‘a helicopter perspective’. Really it was the eagle.

The analogy I see used most often to describe the way people feel when they’re given a cancer diagnosis is the rabbit one. We jump about. We freeze. Our inability to act in the face of danger places us in the path of an oncoming vehicle. We stare back at death. If we don’t mobilise we die.

I did this. It lasted a couple of days. Then I remembered the eagle.

Lift up. Rise above it. Get some perspective. See things for what they really are.

Sometimes this includes recognising how tiny and insignificant I am. A lot of people don’t understand this way of thinking. In a world where we’re all encouraged to see ourselves as the masters of the universe it seems to be counter-productive. I find it helpful to remember that my life, all our lives, are tiny drops in the ocean of human history. I also find it helps me to remember that just a few streets away, or just next door, there’s another person dealing with another crisis whose also feeling like their world is collapsing. When I take a wider view, there are thousands in this town, millions in this country, hundreds of millions of people all over the world, dealing with their own problems (and many of them are, surprisingly, much worse than a cancer diagnosis).

Sometimes, having and eagle’s perspective includes recognising how powerful I am. I can soar. I can pull up from the everyday and look back at it. I can give it context and broader meaning. I can rise above it.

The ability to worry, and to worry about the impact of our worrying, and to worry about that, seems to be a particularly human trait. I’m sure all animals get anxious when they’re under threat, but they respond. Fight or flight, not sitting about ruminating and becoming less and less able to deal with the situation. We often dig our own holes and then sit in the bottom of them, pulling dirt back into the hole and complaining about the mud.

I’ve done this too.

My father died of bladder cancer in his late 50’s. He had been a local politician, highly regarded by many for his dedication to helping people. Years later they named a bridge after him. On the day the bridge opened a huge eagle flew all the way down Brisbane Water and circled above the bridge. My mother said that the eagle was my father.

I’ve never told her about my totem.

I know that life is going to keep throwing up circumstances that feel like the headlights of an oncoming truck. Because that’s life. I also know I have a choice. I can be a rabbit or an eagle. I just have to remember that I have the choice. If I can remember to think of eagles, and to imagine I am one, I can fly.

Cancer and Yoga

I’ve wanted to write a post about yoga for a long time. I keep running it around in my head, trying to find something compelling to say about it. The trouble is that I can remember what my attitude used to be to people that tried to convince me to try yoga. They often seemed evangelical. I wondered how anyone could get that excited about an exercise class.

Now I laugh at my own ignorance. Yoga is so much more than an exercise class but I don’t expect you to take my word for it.

I suppose the best thing to do is to just tell my story.

I really do hope that, after reading this, you go and try out a few yoga classes and that you go for long enough to get over the perfectly natural embarrassment you feel when trying something new. I honestly believe it will be worth it. And if you don’t, that’s okay too.

I started yoga about five years ago, before I’d been diagnosed with cancer. My friend, Trish, says that everyone in a yoga class has a back story, many of them involving chronic illness or mental health issues, but my reasons for starting were much simpler; I couldn’t stand on one leg.

I’d joined the gym and one of the staff was studying to be a personal trainer. She asked if I’d like a free fitness assessment. When she tried to check my balance I was shocked to discover that I couldn’t keep one foot off the ground for longer than a few seconds. She told me that loss of balance is common as we age and one of the reasons elderly people have so many falls. I was in my late 40’s and hardly geriatric. She recommended yoga.

I’d been diagnosed with fibromyalgia many years before. It’s a chronic pain condition that feels a lot like that ache you get when the flu is about to hit you, or, ironically, like the ache you get if you overdo it at the gym. When I explained this to Emma, the resident yoga teacher, she told me to find my ‘intelligent edge’, not to hurt myself, to practice non-violence towards myself. I spent about half the class in a position called ‘pose of a child’.

But I kept going.

Thoughts of broken hips and walking frames motivated me. For the first month or so I felt like this:

funny-cartoon-fist-time-yoga

I love this cartoon. I think it sums up beautifully the reasons why a lot of people give up on yoga. It can be intimidating to be in a room full of people that seem to be able to bend themselves like pretzels. Then there’s the weird Indian names for positions and the weird Indian music. Although I did very quickly come to find the music surprisingly relaxing. My friend, Dayasaga Saraswati (yes, she teaches yoga) tells me that the Indian view of music is spiritual and that they believe it can resonate with us at a subconscious level to promote good health. I’ve come to believe they are definitely onto something.

After about two months I finally made it through a class without having to rest or stop and look at the teacher every fifteen seconds. I felt a small sense of triumph and then remembered that a yoga class is no place for ego. Emma often says ‘Honour the body that you’re in today. It’s a different body to yesterday. You’ll have a different body tomorrow.”

After about three months I found myself really looking forward to Thursday morning yoga classes. I had my own favourite spot on the floor. I was on smiling and nodding terms with a lot of the other regulars. Best of all, I could now stand on one leg. I could also stand on one leg, hold the foot of the other leg with my hand, make a mudra with my other hand and bow forwards in a dancer pose. My body felt energised after classes. Without thinking about it, I naturally started to eat better and to appreciate my body. I could now bend and balance in ways that I didn’t think would ever be possible.

I also noticed that I’d stopped worrying about how I looked or what anyone else in the room was doing. My mat had become a kind of magic carpet. When I stepped onto it I was fully present. When my mind started to drift I would gently pull it back onto the mat. I felt as if I had moved back into my own body. I started noticing that this state of mindfulness stayed with me after class. I would find myself fascinated by mundane tasks and deeply appreciative of special moments. I spent a lot more time in the present and a lot less reflecting on the past or planning for the future. Yoga had done this:

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One day in class, Emma made a comment about incorporating something into home practice. Home practice? You mean one class a week wasn’t all the yoga I needed? Emma and Dayasagar both told me that even five or ten minutes of yoga a day could be life changing. At the time I thought it was highly unlikely that such a small investment of time could have such impressive returns, but I figured it would probably help me to manage my fibromyalgia pain and to stay fit and flexible.

Starting home practice was just like starting class. I was back to feeling awkward and self conscious all over again. I’d do half a dozen cat stretches and then wonder what to do next. I decided to build my home practice a bit like the way we used to learn dances at school. Start at the beginning and just keep adding bits on. I eventually settled into a steady practice that included plenty of different poses. I tended to stick with this basic pattern, occasionally adding in something from that week’s class.

Over time my morning yoga became as essential to my day as my morning shower. I figured out how to pack an old yoga mat into luggage when I travelled. Friends booked a weekend away and kindly made sure there would be somewhere for me to practice.

I realised that yoga had become an essential part of my life. I was feeling fitter, stronger and happier than I could ever remember feeling. My fibromyalgia didn’t vanish, but I was in less pain less often and I could modify class according to how I was feeling. On one occasion when I’d had a serious relapse I turned up at class and burst into tears. “I’m right back where I started!” I told Emma. “It’s okay,” she told me. “You’ve been here before and overcome it. Just honour the body you have today.” To our mutual surprise I managed a whole class. Yoga had conquered fibromyalgia.

Then I was diagnosed with cancer.

My first class after diagnosis was difficult. I knew I’d cry when I saw Emma. I knew I’d be in that uncomfortable position where some people in the room knew something incredibly personal about me while most had no idea. I wondered if I’d be better off giving up class. By the end of that class I knew I had to keep coming. I still had cancer but the fear and horror of my diagnosis had settled. I felt calm. Ready. This is the body I have today and it has cancer. But I’m still here. I also knew that I had to practice non violence towards my own body. I would not bully myself or beat myself up over my cancer diagnosis. I accepted the reality. I resolved to breathe into my diagnosis, to make room for it and to accept it.

When my hair fell out the whole room could see what was going on. People that had smiled and nodded all those years started to talk to me, to ask how I was going, to tell me they thought I was brave or inspirational. As chemotherapy progressed I considered giving up class, concerned that I might pick up a cold. Most people don’t know that a head cold can kill you when you’re going through chemotherapy. Instead I chose to bring a can of disinfectant spray and to use that to create my own little decontamination zone. Friends knew not to kiss or hug me. Class went on. I went back to spending half of it in pose of a child because of the fatigue but I always came away calmer, stronger and feeling at peace. Yoga was a weekly reminder that my chemo ravaged body wasn’t permanent. I would come through this.

Home practice was one of the most beneficial things for dealing with chemotherapy. I would roll out my mat and start with cat stretches. I would immediately feel my energy start to rise and my distress start to dissipate. Some days I would feel to sick or tired and my husband would remind me, “The days you least feel like yoga are the days you most need yoga.” So true.

In the middle of chemotherapy I developed a fever and nearly wound up in hospital with neutropenia. I dodged that bullet but had to miss two weeks of classes. Emma kept in touch via Facebook. Home practice became more important than ever.

Following my first surgery the Breastcare Nurses commented on my extraordinary range of arm movement. I’d had a slice taken out of my breast and a string of lymph nodes removed and I could put my hands into reverse prayer position behind my back. When they showed me the physiotherapy exercises and advised that I work up to them slowly I demonstrated my ability to do all of them and asked when I could get back to class. Three weeks later with the wound carefully taped I was back doing a modified version with Emma’s support and advice. Five weeks later I was back doing a full class. That’s what yoga can do for you.

When the radiation clinic asked me what time would suit me for my six weeks of daily zaps I made sure they didn’t clash with yoga class. My husband was so impressed with what yoga had done for me that he started going to a Monday night class and I went with him as often as possible. After radiation I missed two weeks while my skin became raw but as soon as possible I was back on my mat.

When I got the news in July this year that the cancer had come back and I would need a mastectomy it was yoga that helped me more than anything else. Practice non-violence with my own body and accept what is. This is not the body I will have a month from now because that body won’t have breasts. But it will still be my body.

When I was offered reconstruction one of the critical factors for me was my return to yoga. With reconstruction, my surgeon thought I would probably need to stop all yoga for at least three months and as long as six months, depending on how well I healed. Without reconstruction I could probably be back at class in about six weeks. This is the point at which I really understood how essential my yoga practice had become to me. The thought of not being able to do yoga for six months was distressing.

I realised that yoga, for me, had become so much more than standing on one leg. I had become calmer, kinder, less judgemental. I had noticed improvements in my balance, flexibility and posture, which you would expect but there were also subtle and unexpected consequences. I realised that part of the legacy of my policing career was a tendency to hold my breath, or to breathe in a very shallow way. If you’re doing a warehouse search for an armed offender this is a good skill to have but to do it on a regular basis starves your body of oxygen. There’s a reason yoga instructors include advice about inhaling and exhaling. My sleep improved. My mood improved. I was healthier and happier, even while I had cancer.

Following the double mastectomy in August this year I was still able to put my hands into reverse prayer to the amazement of the nursing staff. One of the old, wise nurses said, “We get two kinds of mastectomy patients. Those that do yoga and those that don’t.” While other patients lay in their beds and watched television I started walking laps of the ward. Forbidden yoga for a couple of weeks I still felt the need for some kind of exercise.

I returned to a modified daily practice as soon as I was released from hospital, nine days after surgery. My doctor cleared me for class after three weeks. I’ve been back ever since.

I am certain that yoga, and Emma’s class in particular, has made an enormous contribution to my acceptance of life without breasts. This is my body and I love it. I am strong, flexible and grounded. Thanks to yoga I also have pretty good legs for a woman in her 50s! I haven’t felt the need for prosthetics and part of that is the complete acceptance of my new body.

One of my yoga friends, Jan, is naturally flat chested. Before my surgery she told me we’d be flat mates. What a wonderful thing to say. Funny that I’d never even noticed she was flat chested until she pointed it out, and that was a reassuring thought too.

There are no words to fully describe what yoga has done for me. Some of it is beyond language. It is deeper. It’s like trying to describe great music, or love, or the colour blue. Sometimes you just have to experience something for yourself. When it comes to explaining yoga, words are like a documentary about Australia. The documentary can show you images of the country but that’s nothing like travelling here, meeting the people and seeing the land. Yoga is the same. If you do it, and keep doing it for long enough, then you understand.

Yesterday I managed a yoga move I’d never done before. It’s difficult. It’s a side plank, which requires me to support my body weight with one arm, followed by a move where I put the top leg behind me and arch my back. I was momentarily pleased with myself and then I remembered that yoga class is no place for my ego. That was yesterday’s body. Cancer has taught me that anything could happen. My body might be very different next week. Even so, I can now say that for the moment, I am officially fitter than I was before the mastectomy. I am also able to support my body weight on either arm. Please think about that for a minute.

I keep trying to thank Emma. She pushes back. “It’s not me. It’s the yoga.” Yes, it is the yoga and it’s also having a teacher that creates a safe space, where I can be weak and ill and full of pain and still welcome. It’s about weaving the philosophy of yoga into each class so that it gently shifts my own thinking. It’s about being a living example of everything she teaches, including humility, which I suppose is why she doesn’t accept any credit.

So this post is for you, Emma. It’s my way of attempting to express the profound impact your classes have had on my life. Thank you. My cancer treatment would have been so much harder without yoga. My life would be so much poorer without yoga and all it has given me. Namaste. You have my deep gratitude and sincere love.

And for everyone else, please consider trying yoga. Not just one class, which I promise will leave you feeling awkward and embarrassed, but try it for a few months. You might just find that it opens up a treasure chest of benefits and even if it doesn’t, at least you’ll be able to stand on one leg.

 

 

 

 

Two Months Post Mastectomy

WARNING: This post includes photos of my surgical scars. Please skip it if you don’t want to see them.

It’s two months today since I had my bilateral mastectomy. I thought I’d make a record of what’s going on physically and emotionally.

I’m healing well. The small scar from my previous (and now ironically named) breast conserving surgery has finally healed although it still looks a little fragile. The two mastectomy scars have healed well. The one on my right side was the healthy breast and that tissue wasn’t damaged by radiation therapy, so the scar is fine and flat. As you can see in the photo, large breasts mean long scars and mine head off under my arms. There’s still a bit of swelling under the scar but most of the fluid that built up (called a seroma) has been reabsorbed. I’m not sure if that bulge you can see under the scar will be permanent. It feels quite hard and might soften over time.

The left breast (also known as the evil breast) was subject to radiation and two prior surgeries and it’s not as neat. Please note these shots are ‘selflies’ using a mirror so things might seem back to front. I’m sure you can tell which breast is which from the photos. The left side has got quite a large lump under the arm, and some puckering just to the side of it. I’ve been assured that this is all ‘normal’ and that compared to a lot of post-radiation mastectomies, mine is one of the good ones. That makes me shudder. The smaller scar is from the breast conserving surgery that discovered the invasive cancer. It was unstable for a while but it seems to be healing well now. This side continues to have weird sensations, a bit like mild electric shocks along with the occasional sharp pain. This is also normal but I’m curious as to why I haven’t had any of these sensations on my right side.

Because of the radiation to this side the skin is weaker and will stay that way for over a decade. The pores look larger and the whole area is discoloured. You can see there’s a couple of odd red patches. Although it looks painful, it isn’t. Because of the nerve pain associated with this type of surgery the most uncomfortable spot is actually the middle of my back.

I’m massaging the scars and the bumpy bits regularly with plenty of rose hip oil or hemp oil. This will help to smooth things out and to minimise the scars.

It’s stating the obvious that none of this is pretty. I am very (VERY) fortunate to have had the love and support of my husband who continues to declare me beautiful, even when I’m naked, and who has no qualms at all about touching my scarred chest. I think that this has had more impact than anything else on my emotional recovery. I know some women don’t even want their partner to look at their scars, let alone touch them, but for me this has helped me to feel just as beautiful as I did when I had breasts. Beauty is not just in the eye of the beholder. It’s also a gift that one person can give to another. If he can look at me and see beauty then so can I. Simple.

The whole area has been numb to touch since surgery but now I’ve got some sensation returning. I’m told that I’ll eventually have good sensation again. Time heals. I continue to be very happy about my decision not to have reconstruction. Tissue transplant involves microsurgery to connect the blood supply but they can’t connect the nerves so although the ‘mounds’ they give you are warm and soft to the touch you can’t feel it. I like this better. I also like that my tummy is intact.

When I look at these photos I wince. They look so brutal. I don’t feel brutalised and most of the time I forget I’ve even had a mastectomy. I can still feel my breasts, and my nipples. I’m told some women find this disturbing. I see it as my body’s way of helping me cope with the loss. I suppose the phantom breasts will fade with time as I become more and more accustomed to life without them. I want to caption them; “Not as bad as they look!” I post them to help other women facing this type of surgery. I found similar photos from other generous women really helpful. I’ll post updated photos as I heal.

As the weather warms up I really am enjoying the freedom that comes from not having breasts any more. I do not miss bras. The sundress with shoe string straps that used to be confined to my home now gets worn out, although I do need to be careful bending forward in it. I’ve discovered that wearing my singlet tops backwards stops them from being too low in the front. Because I can see my tummy when I look down, I’m standing straighter and paying more attention to what I eat. I was 86 kilos during chemotherapy. Contrary to popular belief, not everyone gets thin and wasted. The steroids make you gain weight. I’m now down to 78 kilos and well on the way to 75, which I consider to be my best weight.

Although now that I think of it, I probably need to revise that down to 73 to allow for the two kilos I’ve had surgically removed.

After the drama with the gabapentin prescribed for the nerve pain in my chest, hands, feet and legs (it made me think that suicide was a really sensible option) my doctor prescribed Tegretol (Carbamazepine Sandoz). I took it for three days and it had no impact on the nerve pain but it did make me feel like I was stoned. I hated it. My nerve pain was at very low levels prior to my surgery so recovery without drugs is theoretically possible. I’ve decided to put up with it and see if it improves rather than take these horrible drugs. They all come with a long list of awful potential side effects.

The same is true for the NSAIDs prescribed for my lower back pain. It’s really only a problem at night and eases as soon as I do my yoga in the morning. I’m considering an electronic bed so I can sleep with my legs elevated but they’re expensive. I’ve tried using a pillow under my knees but it shifts around during the night and doesn’t seem to help. I’ve tried several different kinds of mattress topper without seeing much difference. Memory foam made things worse and it also has a smell that’s a cross between a swamp and a chemical factory. Something that was supposed to be latex felt harder than the floor. At the moment I’m using one of those ‘egg crate’ toppers made with foam and it’s not bad. I wonder if the Mater Hospital would let me come and stay a couple of nights on one of their beds so I can determine if it was that or the heavy pain medication that made such a difference during my admission. No. Probably not.

All of the NSAIDs I’ve been prescribed, including Naproxen and Feldene, come with warnings that they may cause bleeding into the stomach and that they should not be taken by anyone who has previously had a stomach ulcer. That would be me! What was my doctor thinking? I need to go back and have another conversation about pain relief. I also make the observation that it’s up to all of us to check and double check everything we’re prescribed. Doctors are human. They make mistakes. Sometimes they’re working too hard and sometimes, just like the rest of us, they have a lapse in concentration.

I am now certain that my surgeon made a mistake when she left the marker clip in my breast during my first surgery. It was interesting that one of the doctors at the imaging centre essentially tried to cover for her when I went back to have a marker wire inserted before the second surgery. For a while I thought it had been left in on purpose but the clues have been there. The last time I saw her she made a point of telling me that there was new research into triple negative breast cancer showing that having a mastectomy as the first form of treatment (rather than chemotherapy) led to worse survival rates. I knew this. I keep up to date with the research. I said this to her:

“Kylie, I want you to know that I am very happy with the treatment I’ve received. I know that having chemotherapy first was the best thing I could have done. I know that it would be easy with hindsight to say that we should have just gone with a mastectomy but it was worth trying to save my breast. We couldn’t have known the cancer would come back. And you’ve got to stop beating yourself up about the clip!”

She replied, “I do beat myself up.:

I said, “I look at it this way. If you hadn’t left the clip in then we probably would have been happy with a biopsy when the one year scans picked up something suspicious. Because the clip was there you decided to do another surgery and because of that we picked up invasive cancer at one millimetre. A biopsy probably would have missed it. I know you didn’t mean to leave it in there but it’s probably a really good thing that you did.”

This is honestly how I feel. We both missed the part of the original pathology that clearly mentioned the absence of the clip. At the time we were both focused on the unexpected ductal carcinoma in situ that was under my remaining tumour. It’s all good. Did the clip have anything to do with the recurrence? Who knows. If it had been taken out with the original surgery would I have still had recurrence? Who knows. This woman is one of the finest breast surgeons in the country. I do know that. I worry that the fear of litigation makes it harder for doctors to admit their mistakes and that creates a risk for all of us. If you can’t share information about what went wrong you can’t learn from each other, or even from your own mistakes.

I used to see the same attitude in policing. We were often expected to be super human. Mistakes attracted media criticism, judicial sanction and sometimes a loss of career. Humans will be humans. Mistakes are inevitable. Creating environments where we pretend otherwise is dangerous and unrealistic.

My strength is returning. The aches and pains are annoying but I’d had fibromyalgia for years before all of this so living happily with chronic pain is my forte. It’s likely that some of what I’m feeling is fibromyalgia. It’s triggered by trauma. I’m pretty sure I’ve just experienced a bit of that.

I’m back at my regular yoga classes and I’m only modifying the back bends. Everything else is fine. I usually need to take a few more rests than I did before surgery but I’m doing well after only eight weeks. My range of movement through my arms and upper body is excellent and I’ve only got one tight area left that needs a bit more work. If you put your arm straight out from your shoulder, move it up to about 45 degrees and then try to move it backwards you’ll have found my sticking point. Now if you move your hand in a circle about the size of a large mixing bowl you’ll have defined it. Pretty good really, given that many women have permanently restricted movement. I’m certain this is down to my yoga.

I’m also back into my neglected garden and moving mulch like a human wheelbarrow. It’s very satisfying and a great way to rebuild my strength. It’s spring, so the blossoms are glorious and it’s a great source of joy to be out there with the worms and the soil and fine weather.

Most of the time my mood is great. I am just so happy to be alive. You know those times when you’re driving and you almost have a serious accident but somehow, you JUST miss it? I’ve got that feeling. A little to the left of here, a smidgen to the right of here, and I wouldn’t be here at all. I’d like to write some more about how coming so close to dying can have such a profound effect on living, but not tonight.

I do think about the cancer coming back but it’s not a frequent or particularly troubling thought. I am the sky. My thoughts are the weather. Everything passes with time. I’ll write some more about dealing with fear of recurrence another time. Anyway, here’s the photos I pr0mised:

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As I said, not as bad as it looks.

Next week my husband and I are off to beautiful Palm Cove in far north Queensland. I’ve told him this is his holiday. We’re going to do anything he wants to do. It’s spring so, just quietly, I’d rather stay home and work on my garden. But he’s had a rough time for just over a year now. His wife’s had cancer. He seriously needs a holiday.

 

Here, Try My Shoes.

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This blog contains a lot of advice about coping with the treatment for cancer and living well after treatment. I often think that offering people advice is a bit like offering them your shoes. Someone tells you they need to walk from here to there (and sometimes they don’t even do that) and you say, “Here, try my shoes.” The problem is obvious. There’s a fair chance that my shoes won’t fit you. Even if they fit you, they might not be comfortable. Advice is a bit like that too.

When I consider whether or not to take someone’s advice it’s like deciding to try on their shoes. This is not a simple decision. From my perspective there are some shoes I know will never be comfortable. I am not, for example, going to try leech therapy to prevent cancer.

There are some shoes that look like they’ll fit me but don’t. For me this happened with radiation therapy. I did my research, heard all about the statistics, endured the embarrassment of having my breasts exposed to strangers day after day and the discomfort of skin damage and then my cancer came back anyway. Conclusion? The radiation did not ‘mop up’ any potentially cancerous cells as promised and I now have permanently weakened tissue and the risks that come with radiation treatment, including future heart trouble, leukaemia, and aggressive mutations to the cancer I’ve already had. Of course the cancer would almost certainly have come back without the radiation and then I would have kicked myself for not having it.

There are some shoes that look like I won’t like them but turn out to be brilliant. Recently I saw a television program about fasting and the research into its benefits. I’m someone whose previously dismissed fasting as too extreme, too radical and too much stress on my body. I was wrong. It turns out that fasting can trigger your body to clean up damaged cells and to improve your production of T cells, critical for a healthy immune system. This is important news for anyone trying to avoid cancer. Research has shown that all of us have potentially cancerous cells circulating the body all of the time. In those of us that develop tumour based cancer these cells have managed to trick the body into providing a blood supply so that the cells can multiply into tumours. Something that helps the body to clean up damaged cells is highly likely to help prevent the recurrence of cancer. I’m excited.

Most importantly, research into fasting has shown that it reduces the PKA Enzyme. Higher than average levels of this enzyme are present in people with cancer and it’s been linked to cell progression and tumour formation. As a side benefit, it’s also linked to ageing (not that I care any more, ever again, how old I look!).

Last week I fasted for two days. There’s a popular diet around at them moment that’s variously called ‘The Fast Diet’ or ‘The 5:2 diet” and the program I saw included an interview with Michael Mosely, one of the people that developed this concept. I really think they should call it a ‘calorie reduction’ diet rather than fasting, because it involves eating 500 calories on two days each week. That’s not the same thing as fasting. I tried 5:2 but for me it was more difficult than just eating nothing for two days. Eating something made me mildly obsessive about what I could include in my 500 calories. Eating nothing gave me a complete break from eating, preparing and thinking about food.

Over the course of the two days I drank plenty of water. On the first day I had two black coffees in the morning but I left these out on the second day. As a consequence I had a mild ‘where’s my caffeine’ headache on day two but otherwise I felt fine. I kept myself busy and distracted. I thought a lot less about food than I expected and while I did have moments of feeling like I wanted to eat I found they passed quickly if I just turned my attention to something else. In my mind, it sounded like this:

“Hmm. I feel like something to eat. Maybe an apple or some peanut butter on toast. Oh wait. I’m fasting. I’ll have a drink of water and find something to keep me busy.”

Interestingly, my hunger did not increase over the course of the two days. I did not become ravenous or distressed about the lack of food. It seemed that once my hunger reached it’s very mild peak it just stayed there and only invaded my thoughts intermittently. I was surprised at how easy I found it to go without food.

The proponents of fasting claim that it improves our cognitive function. They speculate that our ancestors, during times of hunger, would have needed to be more creative problem solvers to find food and so the absence of food improves our thinking. I managed to figure out a complex problem with a broken sliding door, to remove the door, repair it and replace it so there might be something in that.

I was hoping that fasting might have had an impact on my pain levels. I’ve still got nerve pain, particularly in my hands, as a consequence of chemotherapy. I’ve also got lower back pain, possibly from degenerative arthritis in my SI joint or another hang over from chemotherapy. Fasting didn’t seem to make much difference but I remembered my TENS machine and found it made a huge difference to my lower back pain. More creative problem solving, perhaps.

The most noticeable impact was on the duration and severity of my hot flushes. Chemotherapy induced menopause. Post surgically my hot flushes have ramped up again. I don’t find them particularly distressing because I certainly prefer them to menstruating and they mostly just involve the same feeling I get when I walk into summer sunshine. There’s a bit of a glow across the forehead and a down-to-the-bones warmth but I don’t have the panic that affects some women. For the whole two days of fasting I had two very mild events instead of six or so much stronger ones. Conclusion: If you struggle with hot flushes it might be worth trying a short fast. Of course, what works for me might not work for you. These are my shoes.

Meanwhile Graham’s trying the 5:2 diet and loving it.

If you’re interested in 5:2 there’s more information here:

http://thefastdiet.co.uk

Here’s a couple of interesting articles about fasting, one of them with good research references:

http://www.collective-evolution.com/2014/06/22/scientists-discover-that-fasting-triggers-stem-cell-regeneration-fights-cancer/

https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

You might also like to google for more research into fasting.

If you’re about to start chemotherapy then you might want to talk to your doctor about fasting. Here’s just one of the pieces of research showing the potential for fasting either prior to or after chemotherapy to reduce some of the unwanted side effects. It’s also possible that fasting might improve the efficacy of chemotherapy which of course means that it might not, but so far it appears not to have any negative impact on chemotherapy and would, on that basis, be worth trying, particularly for those people plagued by extreme nausea.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815756/

But back to footwear. Sometimes, particularly in relation to cancer, I find myself being invited to wear the shoes of someone that’s losing their fight. I can understand anyone’s desire to share information and advice in the hope of helping other people. It’s the reason I blog. I also think the first rule of taking advice is to consider the situation of the person offering it. I would not, for example, take investment advice from someone that doesn’t invest, or health advice from someone who is unhealthy.

There’s a number of popular cancer related sources, including Facebook pages, blogs, web sites and web magazines that include some often radical advice from people with cancer. I’m sure it’s well meaning but when the author is advocating expensive and radical treatments that have failed to cure their cancer I’m going to be skeptical.

I’ve had quite a few people recommend Anna Kitson’s site at http://savingana.com

She also has a Facebook page.

Anna is now a regular contributor to Mamma Mia where she’s promoted as someone writing about what it’s like to die from stage four breast cancer.

Her site offers several pairs of very expensive and unusual looking shoes. Her recommendations include travelling to clinics (Kliniks) in Germany for treatment, taking expensive supplements, using hypothermia, sticking to a ketogenic diet, taking cannabis oil and considering some of the more radical alternative treatments. It’s possible that this advice is the reason she’s still alive eleven years after her diagnosis. Sadly, it’s also possible that none of it has made any difference to her health, although it’s surely had an impact on her bank balance.

It’s reasonable that she want you to walk a mile in her shoes, but keep in mind where those feet are headed.

I don’t have an easy formula for determining which advice to take and which to reject. ‘Trust your instincts’ is popular but terrible advice in my opinion. My instincts have often led me down darkened alleys to be beaten up by foreseeable consequences. I have distressingly seen ‘instincts’ cause people to reject mainstream medicine and to die cursing the alternative medicine practitioners. I’ve also seen some (but only a few) cases where rejecting mainstream medicine and implementing alternative methods resulted in a return to good health. The trouble with advising people to trust their instincts is that it invariably comes from people who, with the wisdom of hindsight, made a good choice. They seem to conveniently forget all of those times when their instincts helped them to make really bad decisions.

‘Trust science’ is also problematic because while I continue to be a fan of the double blind trial I keep three things in mind; firstly, a lot of research is funded by vested interests and there is a long history of this kind of influence having an impact on the integrity of any research; secondly, funding for research is limited and the ways that subjects are selected for research are often arbitrary which means a lot of potentially promising and beneficial treatments may not have research to support them; and thirdly, science is always evolving and changing which is both wonderful and frustrating. There’s no doubt that elements of the best possible cancer treatment you can get today will be obsolete at some time in the future, in some cases within a year.

Recently I’ve been researching diets in the hope of finding the best possible eating plan for avoiding recurrence. It’s interesting how many ‘sacred cows’ are being barbecued by the evidence. Low fat diets are bad for you, eggs will not raise your cholesterol and even lard (yes lard!) and butter might be new health foods!

When we look back at medical practices of a century ago, or even a decade ago, we can find much to criticise. This will be just as true of ‘modern medicine’ in a decades time, or with the wisdom that will come from a century of improvement. We don’t yet have a cure for cancer. A lot of the best available treatment comes with serious risks and side effects. Would you like bare feet or stilettoes to cross that fire pit?

I’ll keep learning and researching and sharing what I find. It’s likely that I’ll change shoes several times over the next year or so as I figure out what works for me. My aim is to prevent my cancer coming back. All advice comes with this caveat: We won’t know if any of my advice is worth taking for at least five years. It’s also worth remembering that we are all different and complex. What works for me might not work for you.

And as a final caution, I’m always very suspicious of anyone trying to sell me their shoes. It’s relatively easy to set up an impressive looking web site with what appears to be ‘scientific research’ and to market some new wonder product to cancer patients. There are possibly some well meaning people that are over-enthusiastic about something that shows potential and there are definitely plenty of people prepared to exploit anyone desperate for any hope of a cure. It’s always useful to ask ‘Who gains if I take this advice?’ particularly when large sums of money are involved.

Ultimately I’ll resort to gathering my own evidence, being open to what seems instinctively to be counter-intuitive, being prepared to learn and to change my mind and recognising that at some point, failing to make a decision could have worse consequences than choosing any of the reasonable options available to me.

So please, if you’d like to do so, try my shoes. But feel free to take them off again if they’re the least bit uncomfortable, and feel free to reject them completely if you can tell just by looking at them that they’re not for you.