Why didn’t I know about vaginal atrophy?

There’s a long list of things nobody warns you about when you go through cancer treatment. It is fairly well known that chemotherapy, radiation therapy and significant surgery all carry risks and side effects but when your life hangs in the balance most people will agree to anything. I did.

My biggest shocks were the residual peripheral neuropathy, the brain fog, the extent to which losing my nipples impacted my intimacy, and the way chemotherapy slams you into menopause. Think ten hot sweats a night that are so bad I needed to keep towels under me and change them.

The neuropathy has been accommodated. It’s just like having mild pins and needles in your hands and feet and as long as I keep warm it’s not too painful. The brain fog has taken some work, but I have recovered my pre-cancer brain. The hot sweats have subsided to one or two a night and they are much less sever. I have grieved the loss of my nipples. Acceptance is the only help there.

My last visit to the GP included a regular pap smear. ‘You have evidence of vaginal atrophy’ he told me in that voice that sounds like he’s reporting the weather. Cloudy with a chance of incontinence and infection. I’d never heard of it before. It’s apparently a common side effect of menopause and like all other treatment related symptoms, it has arrived with a vengeance.

I hit the internet (of course) and discovered that vaginal atrophy can make intercourse difficult and painful, urinary incontinence more likely and can also increase the incidence of thrush and urinary tract infection. Oh joy! I also noticed something that wasn’t anywhere on the internet. It’s really difficult to find a toilet paper that doesn’t suddenly shed and leave a residue. This product is obviously designed for a self-lubricating vagina and nobody has thought to let manufacturers know about post-menopausal difficulties with their products.

The usual treatment for vaginal atrophy is apparently some kind of hormonal cream or hormone replacement therapy, but having had breast cancer (even the non-hormonal kind) my doctor wasn’t keen. He recommended a non-hormonal vaginal lubricant available from the chemist. It’s inserted using a plastic tube every three or so days. It costs about three dollars per tube. Unfortunately it doesn’t reverse vaginal atrophy. It just makes things a bit more comfortable. It is also sticky and might all come out at once when you least expect it. It’s better than nothing but not ideal.

One site I found recommended sex or masturbation on a daily basis. Ah the bitter irony that menopause chews up libido and spits out sexual activity as a treatment for side effects. My previously healthy interest in orgasms has been reduced to an occasional distraction. My husband and I are still loving and affectionate but like so many others in our position, intimacy has become more important than intercourse.

Meanwhile, my ability to urinate has become complicated. Clearly good vaginal lubrication was part of the whole process working properly and I now find myself trying to figure out how to keep the flow heading downwards and not across my thighs. I know this is odd and perhaps distasteful stuff to write about but that is exactly why I’m going there. It’s good to know you’re not alone.

Recently I was looking for a good gynaecologist (for someone else) and came across an article about laser therapy for vaginal atrophy. The same technology that is used to improve your wrinkles can be used to improve the tone and thickness of the vaginal walls. After months of enduring the slow collapse of my vaginal tone I headed back to my GP to ask him about it. “Oh yes, apparently it’s quite effective,” he tells me, as I resist the urge to growl at him for not giving me information about this treatment six months ago. Does he just assume I don’t plan on using my vagina anymore?

The treatment is marketed in Australia as Mona Lisa Touch Therapy. I’m amused to think that it’s supposed to give me an enigmatic smile as well as a return to vaginal health. It will involve an initial visit with a gynaecologist to determine if I am ‘suitable’ for the treatment at a cost (after rebate) of around $170. If I’m approved as suitable, each laser treatment will cost (after rebate) around $260. I should see some improvement after the first treatment but for the optimal result three treatments are recommended. I haven’t checked, but I’m guessing my health fund will not pick up the slack. I still think it’s worth having. I’m booked in for my initial visit next Monday.

I’ll keep you posted on the results.

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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.

Spare Me The Doom and Gloom

This morning a friend posted a great article about researchers finding a new biomarker for triple negative breast cancer. Like all reports of research breakthroughs, this is happy news. Each day we’re closer to a cure. Here’s a link:

http://www.medicalnewstoday.com/articles/297646.php

This is another step forward but I also note that this article opens with the paragraph we see all the time. It’s this, or a version of it:

‘Triple-negative breast cancer is one of the most aggressive types of breast cancer. It has few treatment options, making the prognosis poor for affected women.’

Actually, in many cases it responds well to chemotherapy, surgery and radiation (excuse me, but aren’t they ‘treatment options’) and the average five year survival odds are 75%, which is SO much better than many other types of cancer, such as melanoma or lung cancer.

I can appreciate that there’s a couple of things going on here. Firstly, researchers keen to attract funding are sensibly using emotive language to generate interest. Secondly, journalists are after an attention grabbing headline. The use of this language to describe triple negative breast cancer is now so prevalent that you’ll find it at the start of almost any article on the subject.

So let’s take a look at the facts.

The ‘more aggressive’ description is accurate. It’s also the reason that many of these cancers respond so well to chemotherapy. It’s now common for triple negative patients to be offered chemotherapy before surgery. There are several benefits to this approach. ‘Triple negative’ is a description of a group of cancers rather than a single cancer. What they have in common is the absence of the three known receptors, oestrogen, progesterone and HER2. But research is already starting to tease this single category out into several sub-categories.

This matters because what works on one person’s triple negative breast cancer might not work on another. Having chemotherapy first allows doctors to see whether or not a particular cancer is going to respond to chemotherapy.

Having chemotherapy first is not usually an option for slower growing breast cancers. Triple negative, on the other hand, achieves a pathologically complete response in around 40% of cases (and this continues to improve with newer treatments). That means your tumours are completely wiped out by chemotherapy.

Even in cases where there’s only a partial response there’s evidence of improved survival rates. In my case, three of my four tumours were gone by the time I finished chemotherapy. So when I read ‘few treatment options’ I get a little annoyed at the doom and gloom. Recently diagnosed people read this stuff and panic. I know I did.

Yes, these cancers are more aggressive, but when it comes to chemotherapy that’s actually an advantage.

There are no ongoing adjuvant treatments for triple negative breast cancer. Those with other types of breast cancer are offered medication that significantly reduces the risk of recurrence. These treatments have been so effective that the five year survival statistics for other forms of breast cancer come in around 86%. These figures improve every year as the impact of new and better treatments affects the statistics.

Remember, you can’t quote five year statistics until you’ve waited five years. What this means is that today’s numbers are already five years old. The other important thing to remember is that the only reason they stop collecting data after five years is because it becomes costly and more complicated. The older we get the more likely we are to die of anything at all. I’ve met people who think that the five year cut off means they are not likely to be here in five years so this is an important one to understand. It’s just the end of the data collection and has no impact on your survival.

If you’d been diagnosed with a hormone receptor positive cancer (oestrogen or progesterone) or a human growth factor positive cancer (HER2) then you would be offered one of the newer medications. These include hormonal therapies, such as tamoxifen or aromatase inhibitors, or treatments that target HER2 receptors, including trastuzumab.

There’s currently research into whether or not tamoxifen might be effective on triple negative, but otherwise these medications are not available to those diagnosed with this group of breast cancers.

This appears to be the reason for the description ‘few treatment options’ but it would be more accurate to say ‘Triple negative breast cancer often responds well to chemotherapy, surgery and radiation but there are currently no available drug therapies that improve long term survival, as there are for other cancers.’

The ‘poor prognosis’ tag reflects the lower five year survival rate but I think calling 75% ‘poor’ is a bit of a reach. If you had three chances in four of winning the lottery, wouldn’t you want a ticket? That’s what 75% means. Until the last two decades or so, a triple negative diagnosis was a virtual death sentence. In that very short time our odds have improved significantly.

Five years is also a point where one of the advantages of triple negative breast cancer kicks in. Having survived for five years we are much less likely to experience recurrence than other types of breast cancer. This is very good news.

I’ve made this point about statistics before but I think it’s worth restating. Statistics are about averages across an entire population. I am not a statistic. You are not a statistic. Every single thing you can do to improve your health and wellbeing improves your personal survival chances.

And that brings me to my biggest issue with this type of headline. Having recently seen the movie The Connection: Mind Your Body, I am convinced of the significance of a whole range of ‘mind-body’ approaches when it comes to living well after cancer. Yoga, meditation, reducing stress, mindfulness and a range of associated complimentary treatments are now proven methods for boosting our recovery and maintaining our good health.

Headlines that tell us we’re facing a ‘poor prognosis’ from an ‘aggressive cancer’ with ‘few treatment options’ have the potential to undermine our treatment and our recovery. Accuracy about the facts is not just about good journalism, it’s also about giving patients something that potentially contributes just as much to our well-being as any new wonder drug.

Hope.

Don’t Say Don’t And Ban The Bullies

Sometimes there’s a confluence, an influx of information that all seems to resonate. I’ve had one of those weeks.

It started with this thought:

What if, the next time you went to see your doctor, they told you that no matter what you did you would never weigh less than you do today? What if your doctor said you had some rare metabolic condition, so it was possible for you to gain weight but not to lose it. Ever. You could become fitter and better toned through exercise. You could improve your health and the appearance of your skin, hair and eyes with diet, but you could never, ever lose weight.

What would change?

My thinking around this issue started with last week’s post about The Fast Diet. While I’ve had great success with it, I think the key to sticking with it started before I read the book. I decided to love my body exactly as it was. I decided to abandon negative self-talk and criticism and to focus on what I loved about my body. At the time I was dealing with an extra six kilos as a consequence of treatment. Contrary to popular belief, cancer treatment doesn’t make everyone thin! I was also carrying the same ten kilos that I gained during my pregnancy over twenty years ago.

I can remember what triggered my shift in attitude. I saw photographs of myself from a night out with my family. I thought, “Oh no! Look how fat I am!” I had gone out feeling great and thinking I looked stylish and when I looked at these images all I could see was a huge, middle aged fat lady in a sequinned top. I cried. Then my daughter said, “Oh Mum! Please stop being so hard on yourself. Your body is fighting cancer! That’s enough for now. You can worry about your weight later.”

My daughter is very wise. This isn’t the first time she’s shifted my thinking. I realised that I’d been indulging in the worst kind of bullying. I had been speaking to myself in a way that I would never, ever speak to someone else.

I stopped beating myself up. I started noticing what I liked about my body. What I liked most of all was how aggressively my body pushed back against the cancer. During chemotherapy my doctor was amazed by my blood work. During radiation my skin held up under the onslaught and my mind pushed back against the overwhelming sense that I was now a commodity to be farmed, like a sack of potatoes on a conveyor belt. (The barcode they gave me at the clinic didn’t help.)

I kept up my yoga all through treatment and noticed the difference in my energy levels when ever I would spend time on my mat. Slowly, slowly as I recovered from treatment I found a new strength and flexibility. My yoga teacher, Emma, reminds me to “be in the body you have today” and to recognise that the body I am in tomorrow will be a different body. This was a powerful message to me when I was dealing with the long term side effects of chemotherapy, radiation and surgical removal of both breasts.

This week, Emma and I had a coffee together and she remarked on how far I’d come. I was told I’d have permanently compromised range of movement in my arms. I don’t. I was told that the arthritis they picked up in my bone scans would mean a life-long requirement for daily pain relief. It doesn’t. Lately I’m noticing how well I’m feeling.

People sometimes comment on how well I coped with the mastectomy. I suppose I just accepted it. I grieved. And then I moved on. It is what it is. I don’t look in the mirror and wish I had breasts. I look in the mirror and think about how amazing it is that I’m still alive. I think about all that my body has been through and how amazing it is that, in spite of all that, the body wants to heal. We are all programmed for good health. I will never have breasts again by my body has done everything possible to work around this massive surgery.

This week I’ve been reading articles about climate change and how, if we want people to understand that crisis, we need to talk about the kind of future we could have in a positive way. Scare tactics just send people in the opposite direction. Nobody wants to bullied or terrified.

I’ve also read an article about the sub-conscious mind and an author’s theory that it can’t understand a negative statement. His theory, essentially, is that when you say “don’t eat chocolate!” your subconscious hears “Eat chocolate!”. His cure for insomnia is to stop saying “I can’t sleep” and to start saying “When I go to bed tonight I’m going to have a deep and restful sleep” because your subconscious will agree with either statement. So if you say “I can’t sleep” your subconscious says, “Okay.”

It’s an interesting theory. Perhaps it’s even simpler. Perhaps it’s just that we all respond the same way to negativity, bullying and catastrophising. We push back.

When I made the decision to love my body exactly the way it is, it naturally followed that I wanted to feed my body well. I wanted to make sure I ate healthy food, avoided alcohol and looked for ways to maximise my chances of living a long and healthy life. I didn’t start The Fast Diet to lose weight or because I was ashamed of the way I looked. I started it because I was convinced by the research that it would help me to prevent cancer.

I’ve always considered myself a work in progress. Over the years I’ve broken bad habits (even that language is interesting), I’ve improved my mind, I’ve become more tolerant and compassionate and I’ve come to feel more and more comfortable in my own skin. Looking back, I can see that change usually happened because an idea was compelling, a truth was apparent or because someone close to me kindly and gently invited me to change. My failures have all included attempts at bullying, either internally or externally.

Nobody likes to give a bully what they want, even when they are the bully.

So I’m heading off to a yoga retreat for some self-nurturing and some time with one of the wisest people I know. We’ll eat healthy food, stretch and breathe and delight in our bodies and return home refreshed and recharged.

It seems to me that being positive has a much deeper meaning than the way it is commonly understood. If we’re going to achieve any lasting change we need to frame it in a positive way. “I will eat nourishing food” is far more powerful than “I won’t eat sugar”. “I will devote some time each day to being physically fitter” is far more powerful than “I will lose weight.” It’s a lot more enjoyable to achieve something than to avoid it.

So back to my original proposition. What if your doctor told you that you could never lose weight? I think the answer for most of us is that we would accept the diagnosis and start focusing on what we COULD do. We’d eat well and enjoy our food without self-recrimination. We’d abandon self-bullying diets and adopt the kind of eating pattern that included a few treats while emphasising sound nutrition. We’d exercise for the pleasure of it, enjoying it for its own sake without jumping on the scales to see if we’d dropped weight.

This is just a thought exercise but a lot of us have already had some practice. My breasts aren’t growing back. I have chosen not to have reconstruction, but those that have chosen it tell me that they still need to accept that their bodies will not be the same. We know that if we’re going to overcome what cancer has done to us, then acceptance and loving the body we have right now is part of it.

So this is my invitation to love your amazing, wonderful body. Think about all of the extraordinary things your body achieves every single day. Listen to the way you talk to yourself and apply this simple test; if you said that out loud to someone else, how would they respond?

Lists of things not to say to cancer patients and why to ignore them

Get well soon card

Yesterday this article appeared on my Facebook wall:

http://www.mindbodygreen.com/0-11076/5-things-you-should-never-say-to-people-with-cancer.html

It’s another list of things you apparently should never say to someone with cancer. It seemed to me like a pretty negative article for a site that’s usually accused of being all rainbows and unicorns.

I was going to comment, suggesting that the author was still angry about her treatment and might like to give it some time before she offers advice. Cancer is hard. Anger is inevitable. I was a bit shocked by some of the comments on the article, and on the Facebook post. This poor woman got slammed.

Every so often someone suggests to me that I could attract more readers by promoting my blog, rather than just letting it grow quietly in this hidden corner of the garden. It’s even been suggested by close friends that I start a Youtube channel and upload videos of myself giving advice. When you see the comments on an article like this one you’ll understand why I don’t. There are some nasty people out there.

Perhaps the article should be called “5 things you should never say to me if I have cancer”. The first mistake this author made was assuming to speak for all of us.

I once wrote something similar about what I did or didn’t want people to say to me. Regular followers of this blog will remember it. By the time I’d had recurrence and more surgery I was just grateful for the friends that stuck by me. They could say whatever they wanted to me!

I think one of the reasons that some people leave our lives is that they’ve become so anxious about saying the wrong thing. Articles like this one don’t help. So let me apologise for my previous advice about what not to say and replace it with the following.

THINGS IT MIGHT BE GOOD TO SAY TO SOMEONE WITH CANCER:

1. How are you feeling today?

This is preferable to a general ‘How are you?’ because it’s specific to the present and allows you to then offer help if needed.

2. What can I do to help?

Or just find something to do to help. I had two friends turn up and weed the garden. Other people dropped off frozen meals or drove me to treatment. It was all appreciated.

3. I don’t know what to say.

Just say it. Be honest. Be authentic. You’ll probably get a response like “Yeah, I know. Me neither.” and then you can have a conversation about something else.

4. What would you like to talk about?

Sometimes the answer will be ‘cancer’ and sometimes the answer will be ‘anything but cancer’ but people will appreciate you asking.

5. Would you like a cuddle?

We’re not contagious or toxic and affection can be wonderful for helping to cope with pain – just not if you’ve got a cold or flu because catching a cold can kill someone on chemo.

6. Please let me know if you want me to go. I won’t be offended.

Sometimes treatment is exhausting and we find company tiring.

7. You look great!

I think the protocol for this one is simple. If I’ve clearly gone to some effort with my appearance then tell me how great I look. That was the whole point of making all that effort. If I’m just hanging around the house in my track suit then probably best not to comment.

8. I love you.

This never gets old. And you don’t want to regret not saying it.

Most importantly, don’t abandon us if you can possibly avoid it. Some people are going to. They’ll find it too difficult or confronting. They’ll find it brings up memories of someone they loved that died of cancer. They’ll want to protect themselves from the possibility of having to weep at our funerals and comfort our loved ones so they’ll suddenly or gradually distance themselves.

Please know that it’s your friendship that matters, and our friendship for you includes always remembering that people sometimes make mistakes, and sometimes say things that might upset us, but if we remember their love for us it really doesn’t matter.

Friendship also means you might need to remember  that cancer will make us sad and angry and oversensitive and sometimes hard to be around. We might take offence at the smallest thing. It’s really our problem and not yours. Just hang in there and say whatever you like.

By all means say, “I understand that you’re upset but it’s not okay to talk to me like that.” Cancer does not give us licence to behave badly. It just gives you a reason to forgive us when we do.

Most of all, ignore the lists of things to say and things not to say. Some people hate any comment on their appearance, some people don’t want to be asked about help, some people might be angry that you don’t know what to say. Some won’t. We’re all individuals. Nobody speaks for all of us. That’s why my list includes the word ‘might’.

At some point there are no ‘wrong’ things to say to us. We’re just so happy that you’re still in our lives.

Is There a Fast Way to Reduce Cancer Risk?

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Here’s a quick quiz. How many of the following statements do you think are true?
1. Fasting is bad for you.
2. If you don’t eat regularly you’ll get low blood sugar and feel tired
3. You can’t exercise if you’re fasting.
4. You must eat breakfast to ‘kick start’ your metabolism.
5. Losing weight is simple a case of energy in, energy out; reduce the amount of food you eat and increase the amount of exercise you do and you are guaranteed to lose weight.
6. Fasting will promote binge eating.
7. Fasting will promote eating disorders.
8. Going hungry will make it difficult for you to concentrate.
9. You can’t sleep if you’re hungry.
10. Weight gain is unavoidable with age.
11. Losing weight means giving up food you love.
12. Over weight people are just making excuses because they are greedy.

For me, cancer has been a lesson in holding my opinions lightly. So many things that I was sure of have been flipped. The most recent example is fasting.

I can remember a friend trying to convince me of the benefits of fasting over ten years ago. I dismissed her arguments and ‘new age nonsense’ and put fasting in the same basket as alkaline and ketogenic diets. I’m a skeptic. I need evidence.

Then a couple of months ago when we were channel surfing I found a story on the Sunday Night program about intermittent fasting. It included an interview with Dr Michael Mosely who made a documentary for the BBC a couple of years back following his investigation of fasting. With Mimi Spencer, he wrote a book about what he discovered. Here’s a link with a pretty good description:

http://www.booktopia.com.au/the-fast-diet-mimi-spencer/prod9781780721675.html?source=pla&gclid=CjwKEAjwtIShBRD08fKD1OWSik4SJAAuKLovgENgBkfcr5B9jRV2vQjPVCEN_BsMJA6t1GlDkSfwohoCn1vw_wcB

I gained about ten kilos during chemotherapy and at the time it was a source of distress. My beautiful daughter reminded me that my body was fighting cancer and that I shouldn’t worry about extra weight. She was right. I stopped obsessing about it.

I also got back into my daily yoga habit. You can’t downward dog on a full stomach so postponing breakfast became normal. I usually eat what I call my ‘super porridge’ around 10.30am. I’ve also been tired so I’ve been eating dinner around 6.30pm and going to bed early. Without planning to I’ve been creating a much longer gap between my last meal and my first meal. Two things have happened. The weight that I gained during chemotherapy has gradually disappeared  (not counting the two kilos they removed from my chest!), and my appetite has reduced to the point where I rarely feel particularly hungry and I never feel ravenous.

Without intending to, I’ve been adopting one of the behaviours that research now tells us can permanently reduce weight and improve health. I’ve created a ‘fasting window’.

It occurred to me that I was naturally thin when I was younger. My weight problems came during pregnancy when I was told I MUST eat breakfast. Up until then it was my habit to have coffee in the morning and not to eat until lunch. While I was breastfeeding there was also the breakfast mantra. Now it seems the experts were wrong. Or perhaps more accurately, the advice was incomplete.

If you’re a ‘breakfast person’ then you should eat it. If you’re not then you shouldn’t feel guilty about skipping it. And regardless of your age or your weight, it seems that fasting is good for most people.

What’s most appealing to me about this way of eating is the rigorous science behind it. Most diets work for some people for some of the time until, almost inevitably, they regain the weight they lost (and then some). This diet involves a permanent change in eating behaviour that most people find relatively easy and sustainable. You won’t just lose your saddle bags and your muffin top. You’ll also drop the fat that’s around your major organs and this weight loss has all kinds of health benefits, including a reduction in your risk of developing diabetes.

Eating this way gives my body time to repair itself. When we eat our body manufactures new cells. When we fast for long enough it triggers our ‘repair mode’ and the body not only draws on our fat stores for fuel, it also cleans up damaged and unwanted cells. You can imagine what exciting news this is for anyone prone to cancer. My damaged cells can kill me.

We now know that most of us have cells with the potential to become cancer circulating our bodies all of the time. Yes, when I say ‘most of us’ I mean potentially any human on the planet and not just those of us with a history of this disease. In order for these damaged cells to become tumours they need to trick the body into providing them with a blood supply.

Of course, most of these cells get killed off by the body as part of our normal process of cell rejuvenation. Now it seems that intermittent fasting boosts this process. That means that changing the way we eat could have huge benefits for cancer patients.

Fasting also increases our white blood cell count and boosts our immune system. It helps to reduce insulin type growth factor, which is important because high levels have been shown to correlate with a higher risk of cancer. Here’s an article summarising some recent research:

http://news.nationalpost.com/2014/06/05/fasting-for-three-days-renews-entire-immune-system-protects-cancer-patients-remarkable-new-study-finds/

After checking the research I am convinced that intermittent fasting has the potential to reduce my risk of recurrence. My husband was also keen to try a 5:2 diet to lose the extra kilos that he’s put on during the last year so about six weeks ago we both started limiting our calories for two days a week.

We chose Tuesdays and Thursdays as our ‘fast days’. You can choose two consecutive days but most people find this harder than breaking them up. On fast days, Graham likes to have breakfast which is usually some kind of vegetarian omelette. I prefer to save my 500 calories for one meal at dinner time. I’ve found that it’s easier to not eat at all during the day. I love that this way of eating is so flexible and that you can adjust it to suit your preferences.

Dinner on fast days is a big pile of low starch vegetables (leave out the potatoes and corn) topped with a small serve of protein. We often have fish because it’s low in calories and I don’t eat enough of it. We’ve also had eggs, tofu, organic chicken and grass fed organic lamb or beef.

Graham gets 600 calories by virtue of his gender which means that once he’s had breakfast I’ve got plenty of room to make us both a delicious dinner.

So how are we going?

Well, a girlfriend came to visit me this weekend to take me out to my favourite restaurant as a late birthday treat. I sat enjoying the view out the window of the ocean and tucked into my goats cheese tart with duck breast followed by a giant pork chop with heaps of vegetables and thought “This has got to be the best diet EVER!”

When my daughter turned 21 I finally admitted to myself that the in spite of all the dieting and exercising I was just going to have to live with ten extra kilos for the rest of my life. I did, once, manage to get back within my BMI by attending weekly Weight Watchers meetings and obsessively measuring and counting everything but I was so miserable that it was unsustainable. What a great business model they have; any loss is their credit and any gain is your fault!

My daughter has a similar metabolism. I’ve seen her eat like a bird and train like an athlete only to be distressed by the lack of any movement on the scales.

The thing I love the most about The Fast Diet is that it has finally exploded the whole ‘energy in-energy out’ myth of dieting. Ask anyone whose battled their weight long term or any honest personal trainer and they will tell you that it’s just not that simple. Traditional dieting ultimately makes people fatter.

What’s worse than the lack of results on the scale are the thin people that spout “You just need to eat less and exercise more!” as if you weren’t already doing that. The implication that you are just being untruthful about your vigilance is offensive and demoralising. You give up. You eat a bar of chocolate. You may as well, because people assume you are anyway.

So you can imagine my excitement when (drum roll please) the scales showed my pre-pregnancy weight! I’m so happy I’ve become evangelical. We are not ‘big boned’. We do not have ‘a slow metabolism’. We are not weak, lazy, self delusional or greedy.

The first couple of weeks of fasting required some commitment and a bit of effort but it was much easier than I expected it to be. Yes, I was hungry. So what. Every diet I’ve ever tried required me to feel hungry but I was required to feel it every bloody day! Two days a week? No problem!

What makes it really easy to get through fast days is this phrase: “I’ll eat that tomorrow.”

You see, the wonderful thing about The Fast Diet is that you don’t count or restrict anything on your other days. Yes, you read that correctly. No calorie counting. No portion control. No using matchboxes or your palm to measure serving sizes of the food you love. The authors recommend that you eat a healthy diet most of the time which is high in vegetables, includes some fruit and good quality protein but you can also include occasional serves of the foods that are usually forbidden.

I’m thinner than I’ve been in twenty two years and I did it while eating pizza, French cheeses, gourmet dinners, decadent desserts and the occasional hand full of potato chips. On the recommendation of the authors via their Facebook page we suspended fasting over Christmas, both gained a couple of kilos and then lost them when we fasted the following week. You can see why they call this ‘The Foodies Diet’.

I have other reasons for eating well most of the time. I know that good quality whole foods can contribute to my health and reduce my risk of occurrence. I also know that eating well affects my mood, my energy and my appearance. But The Fast Diet means that I can finally enjoy food again without any guilt. I can have an evening out at a beautiful restaurant and not use kilojoules or fat content as a criteria for menu choices. For someone like me who loves fine dining this is close to miraculous.

Apart from the weight loss I think this way of eating helps to educate your subconscious; hunger is not going to kill me.  Like other people on this diet, I find that hunger does not increase throughout my fast days. It comes in waves. It peaks and subsides and it’s no worse at the end of the day than it was in the morning. It’s about as uncomfortable as a small stone stuck in the bottom of your shoe. Mildly annoying. Not more than that.

This is not a starve and binge strategy. Although I expected to be hungry the day after a fast day I actually stuck to my usual routine of a late breakfast. I have found that I am just not as hungry as I used to be and that I naturally eat less. Although I had no hesitation in ordering a pork chop for lunch I chose not to eat all of it and I passed on dessert. On purpose. My choice.

I’ve also lost my sweet tooth, perhaps because fasting has starved the sugar-eating bacteria in my gut. (Another recent Catalyst program explained that this bacteria can signal our brain to crave more sugar.) The research confirms that people don’t overeat after a fast day. That’s part of why this strategy works so well.

For the first few weeks, fast days were a challenge. I avoided anywhere that sold or stored food (including my kitchen) and kept myself busy doing things I enjoyed. I slept late and went to bed early in order to shorten the day. I felt occasionally ravenous but then I would distract myself with something, have a nice big drink of water and the feeling would pass. It reminded me of giving up smoking.

Now to my surprise I actually enjoy fast days. Apart from being seriously impressed with the results (12 kilos gone and counting) I find I have plenty of energy, I think clearly and I don’t ever suffer from ‘low blood sugar’ fatigue, which, it turns out, is just one more dieting myth that this research has exploded. Think about it. You go to bed every night and go without food for seven or eight or nine hours. You can usually add in the couple of hours you didn’t eat before you went to bed. Do you wake up feeling light headed because of low blood sugar? Ironic that this diet might be the way to avoid diabetes.

Some of the recent research is showing that athletes actually perform better if they fast before competition. The guy that wrote the book on ‘carb loading’ is now apologising and advocating a different approach. It makes sense that as an animal reliant upon hunting to provide our food, fasting would trigger improved athletic performance.

I’ve only got another two or three kilos to go and then I’ll cut down to one fast day a week for the rest of my life. It’s clear that this is one way I can actively help my body to avoid cancer in the future.

If you’re interested, here’s a great article by Michael Mosely:

http://www.independent.ie/life/health-wellbeing/the-fast-way-to-lose-weight-live-healthily-and-fight-ageing-30600623.html

5:2 is not the only way to fast. Some people find it easier to limit their eating to an eight hour window each day. This is usually referred to as the 8:16 diet. You might, for example, have your first meal of the day at 11.00am and your last meal at 7.00pm. Eating this way gives your body a fasting window where it can switch to repair mode. The biggest difference with 8:16 is that you need to eat this way every day (some people take one day off a week) for the rest of your life. It’s a personal choice whether you prefer 5:2.

There’s also the option of doing a three day continuous fast every month. If you prefer this, you need to be aware that this is a serious fast and not just the calorie restriction you get on the 5:2 diet. Most people doing a three day fast have only water or herbal tea. Some have clear soup or broth. I know people that combine a monthly fast with some kind of spiritual practice such as a retreat, meditation, yoga or prayer. It’s about a lot more than diet for them, but a spiritual aspect is not a requirement. I think the most difficult thing about three day fasting is fitting it into your life. Few of us can walk away from our lives for three days every month and trying to maintain an extreme fast while friends, family and co-workers are enjoying meals would be difficult.

I’ll probably do a three day fast a couple of times a year for the health benefits.

Regardless of which model you choose, fasting is good for you.

I’ll add my usual caution here. If you’re currently having treatment then discuss any diet changes with your doctor and please, do your own research. If you’re having chemotherapy then it’s worth googling ‘chemotherapy and fasting’. There is evidence that fasting might help to make chemotherapy less toxic to the body and more effective. Ironically, the chronic nausea and loss of appetite could be part of the reason chemotherapy works at all.

If you sent me a message saying you had just been diagnosed and asking my advice then part of my response would include a recommendation that you fast for three days. If I could go back in time that’s what I would do. It’s possible that fasting might just help our bodies to fight active cancer.

This is a fascinating area of research and one I’ll be keeping an eye on.

So here’s a short list of the ideas I’ve now consigned to the rubbish bin:

1. Fasting is bad for you.
2. If you don’t eat regularly you’ll get low blood sugar and feel tired
3. You can’t exercise if you’re fasting.
4. You must eat breakfast to ‘kick start’ your metabolism.
5. Losing weight is simple a case of energy in, energy out; reduce the amount of food you eat and increase the amount of exercise you do and you are guaranteed to lose weight.
6. Fasting will promote binge eating.
7. Fasting will promote eating disorders.
8. Going hungry will make it difficult for you to concentrate.
9. You can’t sleep if you’re hungry.
10. Weight gain is unavoidable with age.
11. Losing weight means giving up food you love.
12. Over weight people are just making excuses because they are greedy.

All of these are WRONG. Imagine my delighted surprise!