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.

Advertisements