Second Mona Lisa Touch Treatment

Yesterday was my second round of laser treatment for vaginal atrophy. The procedure was much like the first but I was a lot more relaxed now that I’d been through the whole routine before.

The doctor asked about my response to the first treatment. There’s no doubt that I’ve had good results. I’m much less dry and a lot more comfortable. I’m having what I think of as the toothache response, where you don’t appreciate how much something was bothering you until you find relief.

The observable differences after the first treatment included an end to leaking following urination. For me, this was enough to justify the cost, but the benefits included better vaginal lubrication and relief from the residual tension I hadn’t noticed my body had been holding in response to feeling like I had sand caught in my swimmers.

I was surprised to notice that having better vaginal lubrication also improved my libido. I suspect that my body, recognising that intercourse was likely to be painful, had shut down whatever part of the system makes me interested in sex. I also made the observation that my mood generally was much better. I had underestimated the impact of a poorly functioning vagina on my emotional state.

For the second treatment the doctor spent a bit more time on the entrance to my vagina and to the exterior labia. This is more uncomfortable than the internal treatment due to the increased nerve endings in this part of the body. I commented that the pain level was similar to having hair removed using wax strips and the doctor replied that this was a common observation. It stings, but not for long.

Post treatment I was advised to use sorbolene externally to reduce stinging during urination. I was very glad that I’d purchased some on the way home because ‘stinging’ turned out to be a painful burning sensation. The sorbolene relieved it instantly. If you’re having this treatment then it would be worth buying some in advance. I’d recommend finding plain sorbolene in a pump pack and avoiding anything with perfume or additives as this could irritate sensitive skin. A pump pack makes it easy to apply and you don’t have to worry about getting the lid back on.

My other tip would be to dress warmly on the top half of your body for your treatment sessions. For reasons I don’t understand, most gynaecologists wear suits and adjust the temperature control accordingly. This time around I was much more comfortable in a soft jumper, even though it was a fairly warm day.

My second treatment cost $350 with a $90 rebate, so I was $260 out of pocket. Given the improvement I’ve observed I consider it money well spent. I have one more treatment in a month’s time and then I will only need occasional top up treatments. There is no way of knowing how often I’ll require these and the doctor tells me that it varies from annually to every three months. I’m already certain that no matter how often I need them, it’s worth it.

I am also grateful to be in a position where we only need to cut back a bit of spending in a few places for this to be affordable. I am aware that for many, many women it will just be far too much money, particularly if the finances have already taken a huge hit following cancer treatment.

I’ve been spending the last month contemplating the fact that men can obtain viagra at a government subsidised price (at least in Australia, where I live) because there is recognition that erectile dysfunction is not just about the ability to maintain an erection. It’s also something that has significant mental health repercussions. How is vaginal atrophy any different?

I appreciate that there’s an argument for making treatment available to breast cancer survivors based on the same arguments used to justify government subsidised reconstruction, but I don’t think the subsidy should be restricted to us. Anyone having chemotherapy is at risk of early menopause and vaginal atrophy, not just those of us receiving treatment for breast cancer.

It’s also worth considering that all post menopausal women are at risk of this condition, regardless of their cancer status. As the doctor observed on my first visit, it’s only cultural attitudes that prevent us from treating this as a serious health issue. Why is that, and how can we shift those attitudes? Why is it important for men to maintain sexual function, but not women?

The doctor also observed that sexual function is not the most important benefit of this treatment, which is saying something, considering how significant this benefit is for many women. Vaginal atrophy also predisposes women to a much higher rate of urinary tract infections, prolapse, urinary incontinence and just day-to-day discomfort.

I was pleased to see a current university study into the Mona Lisa Touch therapy. I’m hopeful that the results will validate what so many patients already know. This is a non pharmaceutical treatment with significant benefits and few side effects. It should be better known and more widely available at an affordable cost.

So far, I’m impressed. I’ll report back next month after my final treatment.

 

 

Advertisements

First Mona Lisa Touch Treatment

Today was the big day. I was fortunate to be able to book in early for my first Mona Lisa Touch session, due to a cancellation. I’ve spent some of the last week reviewing comments on other sites about it and by 4.00pm today I was feeling mildly excited about the whole thing. The main objection seems to be cost, and the need for ongoing treatments. Results vary from good to excellent. Some women report pain, and some don’t.
You know that thing that happens where you finally admit you have a problem and suddenly you start to notice it much more than you used to? I’ve had a week like that. I suppose the long, slow decline into significant vaginal atrophy has beens so gradual that I have just accommodated the discomfort. All I’ve been able to focus on this week has been the sorry state of things, and the possibility of recovery. Today couldn’t come soon enough.

I was shown into the treatment room and asked by the assistant to strip off everything below the waist. “You can keep you knickers on until the doctor arrives if you like.” I didn’t see the point but appreciated the courtesy. I sat in the treatment chair and spread a cloth across my lap. A few minutes later the doctor arrived. He took some individually packaged items out of a cupboard and put his disposable gloves on, before explaining to me that the first treatment was usually the one people found a bit uncomfortable, mostly because of the unfamiliarity of the process.

The doctor attached a metal rod about the size of a tube of toothpaste to the end of a cord attached to a mechanical arm. He held his hand behind the tip of the rod so that I could see the red laser against his glove. This was what would create tiny blasts against the walls of my vagina, causing the skin to rejuvenate. It looked a bit like the laser toys you use to amuse cats, and I avoided making pussy jokes. Next, the doctor explained that the device would vibrate and that the procedure sometimes resulted in some smoke and a burning smell so he’ll be using a small vacuum. The humour potential of this procedure is apparently endless. Determined to have a smoking hot vagina, I scoot down and put my legs in the stirrups.

I’ve watched the video of this procedure before coming in today and I highly recommend it. Knowing what is about to happen certainly reduces any anxiety. You can view it on Dr Metawa’s site here:
https://drmetawa.com.au/web/index.php/gynaecology/vaginal-atrophy.html

There’s some pressure as the rod is inserted, but no more that you would feel with a speculum during a pap smear. Probably less. I’m asked to take a deep breath and to let it out slowly. Once the rod is inserted, the doctor asks me if I think there’s any more room and I suggest he can probably go a bit deeper. I am once again impressed by his determination to minimise any discomfort to me.

The procedure starts and there’s some clunking noises from the machinery, a mild vibration from the rod and the faint odour of burning skin. It doesn’t feel unpleasant and I am not in any pain. I did take two Pandadol about an hour before the procedure, just as I would with leg waxing or any other minimally painful procedure. I know that the laser is making tiny incisions into the walls of my vagina but I can barely feel it.

After about five minutes the doctor tells me that we are half way, and that I may find the sensations more intense as the skin towards the opening of the vagina is more sensitive. I start to feel some stinging, but it’s mild and certainly less that the pain of waxing or laser hair removal. As predicted, the intensity increases at the opening of my vagina and there are a few hits to the vulva that sting. If you have every pulled out a stray pubic hair with tweezers, that’s close. A bit of an ‘ouch’ but nothing too serious. I’m smiling and chatting. It’s all good.

The whole procedure is over and done in about ten minutes. There is no pain or discomfort once it’s finished. I’m told not to put anything in my vagina for five days and to expect a kind of watery discharge which may show signs of blood for about three days. All this is normal.

I was told the procedure would cost $200 with a $90 rebate but there’s also a $150 consultation fee, so $350 all up with $90 back on Medicare means I’ve paid $260 for today. I have two more treatments to go, each a month apart. I think it’s money well spent.

To put the cost into perspective, I know people that spend $300 a month at the hairdresser, or the beautician or the manicurists. Personally, I don’t balk at spending at least that amount on regular massages and yoga classes. It’s all about priorities. I’m hoping to reclaim comfortable intercourse with this procedure (and it would be worth it for that alone). I’m also expecting it to restore my ability to urinate without it going over my thighs and to be able to stop urinating without it continuing to leak. As a side benefit, I will be able to use toilet paper again without leaving a trail of confetti behind.

As I drive away from the doctor’s surgery I have a pleasantly warm sensation in my vagina and vulva. It feels a lot like the last time I had great sex. There is no pain two hours later as I write this, but I’m feeling hopeful and happy. I heard from one woman who said she needed to sit on ice packs for three hours after her treatment. I don’t know if this is something to do with her anatomy or something to do with the skill of the operator. I simply acknowledge that my absence of pain might not be the case for everyone.

It’s too soon to tell how much impact my first treatment has had, but already I feel a lot more comfortable. Things feel normal again, rather than dry and stretched. This is a good sign. There’s a mild stinging when I urinate but it’s brief, and there’s enough blood to wear a panty liner.

I’ll update in a couple of weeks when the results should be evident. I’m feeling optimistic.

In other news, my yoga teacher has asked me to do a trauma workshop with her and to lead some of the exercises from my book. I’m honoured and excited. There are also two psychologists and a doctor that have told me they plan on recommending it to their patients and a local oncology massage practice have a sample copy on display. I had great feedback from a lovely woman this week. Here’s the link again for anyone who’s interested:

https://www.amazon.com/dp/1521249377?ref_=pe_870760_150889320

 

 

 

Getting doctors to take us seriously

I woke up this morning to news that a friend is in hospital with a burst appendix. This should not have happened.

She developed the characteristic pain associated with appendicitis last week and saw an after hours doctor. She was referred to a hospital for assessment where she was examined by another doctor who decided she didn’t need further treatment. She was not offered either ultrasound or a CT scans. She was sent home.

Her doctor accepted the word of the hospital doctor and continued to work with my friend to determine what was going on. There were tests. There was pain medication and ultimately a burst appendix. All this in spite of my friend repeatedly reporting acute abdominal pain.

I can’t help wondering if women reporting pain are treated differently to men reporting pain. This is not my only recent experience of this apparent bias.

My daughter has an unfortunate history of not being taken seriously by doctors, particularly with regard to pain. As her mother, I know that she is inclined to actually be rather stoic when it comes to pain. She does not exaggerate and she’s likely to wait a while before she resorts to pain medication. I know that if she says she is in pain she means it.

And yet, time and again she has had doctors dismiss her with a shrug of their shoulders and a suggestion that she should ‘just keep an eye on it’. This week she will have surgery on her finger. It has been causing problems for a couple of years now. It is always tender and if she bumps it against anything she experiences strong, stabbing pain on the underside of the nail bed. She has repeatedly told various doctors about the problem.

Finally my daughter encountered a freshly minted doctor, filling in at the practice she regularly attends. The locum was interested enough to send her for an MRI. What it revealed was a tumour. While currently likely to be benign, this type of tumour does have the potential to become cancerous. It needs to be removed.

My daughter is understandably angry. She’s not only had years of pain in the hand, she’s had it while working through a university degree and having to type on a daily basis. She’s had it in spite of several reports to doctors who seem to have just assumed she was over stating her pain, or displaying some kind of hypochondria.

Not only that, but this is just the most recent in a series of similar events where it has taken her two, three or four visits to different doctors before she finally finds someone prepared to take her seriously. In every single case there was a serious underlying medical condition that required treatment.

How does this happen? Are doctors’ surgeries so filled with over-reporting, attention-seeking women that the rest of us get tarred with the same brush?

My daughter wonders if she would have received better treatment if she had been a man, particularly a large, football-playing man. I think she would have. I think a doctor would have assumed that any man attending the surgery and reporting acute pain in his finger had something worthy of further investigation.

If you are a doctor and you are reading this then I would like to offer this piece of advice. Please do not assume. Your opinions about female patients might have some basis in fact and I allow for that. It could be that women actually are more inclined to exaggerate their symptoms or to seek medical attention when some over the counter pain relief and a bit of rest are all that is needed. Personally, I doubt this. It is inconsistent with my own experience but my personal experience is limited and perhaps you know better.

Still, here’s the thing, even if some women (or even most women) are inclined to this type of behaviour, many of us are not. Many of us are the type of people that wait to see a doctor and possibly wait a bit too long. When we arrive at your surgery seeking your help we’ve already given time and Panadol a go. We have already been ‘keeping an eye on it’ and that is why we are now seeking your help.

You might also like to keep in mind that we have a naturally higher pain threshold than men. There’s good science on this. So when we report pain it is likely to be more serious, not less.

I think it’s just possible that there is a long history of characterising women unfairly. We used to be treated for ‘hysteria’, a mysterious condition thought to be caused by our womb roaming our body and creating mood swings. In recent years the assumption that our menstrual cycle will result in strange and irrational behaviour every month has become so widely accepted that it now gets used as a criminal defence. The truth is that most of us manage to live our lives without turning into raging lunatics once a month.

Menopause is characterised by some as an onset of permanent mood swings that are as suddenly changeable as New Zealand weather patterns. Which is odd, given that I now keep company with a circle of post menopausal friends who clearly manage entire days, weeks and months of sensible behaviour.

Enough.

Women are not over emotional. We are not, by nature, moody, unreasonable, attention-seeking drama queens. Most of us are just like men in this regard; capable of experiencing the full spectrum of human emotions and expressing them in appropriate ways. The exceptions are just that. Getting doctors to understand this is not just about better bedside manner. It is about saving lives.

My daughter’s cyst could have become a tumour. My friends appendix has burst and she is now dealing with the risk of long term health consequences because of it. Head to any cancer forum and you will read story after story of women that were told a lump was nothing to worry about only to discover it was a tumour. We’re not making this stuff up!

As patients I think we also need to be aware that this bias exists. I wish it was as easy as saying to a doctor, ‘Do you think you might take me more seriously if I was a man with these symptoms?’ I am known to be what my husband politely refers to a a ‘forthright’ but even I would find this kind of comment too confrontational. There are gentler ways to achieve the same outcome.

Perhaps it would be a good idea if we enter a doctor’s surgery with a clear idea of what we want and refuse to leave until we get it. Being able to ask for a scan or some other form of diagnostic test can be difficult. We want to trust our medical professionals. We feel rude challenging their diagnosis.

I have found that it can be useful to frame this kind of request as a need for reassurance. This doesn’t challenge your doctor’s expertise. It can also be useful to ask your doctor to consider alternatives. Yes, a second opinion is an option but it is also both time consuming and expensive, and there is no guarantee that you’ll be treated any better by another doctor.

So here, in the interests of better health care, are my suggestions for questions to ask your doctor when you feel like you’re getting the ‘silly woman’ treatment:

I have been worried about this and I would really feel a lot better if I could have an x-ray (ultrasound, bone scan, blood test etc).

I know you don’t recommend having any kind of testing for this but I’d like one anyway.

May I please have a referral for an ultrasound? And if your doctor replies that they do not think you need one: I appreciate that but I would like one anyway.

What should I do if I still have the same symptoms in a couple of days? (Next week? Next month?)

What else might be causing this? 

None of these questions are rude or discourteous in any way. You’re just asking for what you want. Of course asking for what you want can feel like hard work in an environment where you know you might be dismissed as over reacting, simply because of your gender.

Which is precisely why I think we should all get a lot better at doing it.

 

 

Book Reviews!

There’s something mildly terrifying about writing a book.

In the writing phase I was consumed with craft and content. I wanted it to be simple, but not too simple. Useful and not overwhelming. Helpful and not exhausting.

After completing the first draft I put it aside for several weeks, came back to it and was shocked by how much repetition and useless waffle it contained. I edited fiercely.

A couple of people read through the draft for me, including one very generous friend whose a professional writer. The feedback was good. It was time to publish. No reason not to just jump right in and do it. And yet it felt terrifying! It suddenly occurred to me that I was putting myself out there, open to whatever criticism people decided to hurl at me. I metaphorically chewed my nails as I waited for the book reviews to arrive.

First came the friends. How I love my friends! A couple of them found the time to post their comments on the Amazon site. Here’s what they said:

A very valuable resource for everyone, not only those that have had cancer. There is so much knowledge and information within this book for tools with working through freeing yourself from fear. I believe sometimes when we get caught in fear, there is fog, we don’t seem to acknowledge our own values and get lost in the mist. There is so much within this book that draws on many techniques for working through this and with a lovely sense of humour, it shows Meg McGowan has had the life experience to walk the talk. Thank you Meg McGowan.

And this:

If I could pay $5 to avert one hour of meaningless fear, would I spend it? “Of course!” I thought, and bought this book.
It turned out to be full of practical ideas that I can use straight away on myself and the fearful ones around me…thats everyone alive.
Holding hands with the fear-monster is a sweet image, and does it work?
Well, I tested it.
After reading the book I did a suitable amount of scary-monster hand-holding, then went though a list of scary phone calls, scary conversations, procrastinated tasks.
I’m unharmed, and the quality of my future is now better. You don’t need a life-threatening illness for this book to protect and nourish you.
As a bonus, dandelions will forever look more beautiful, after reading this book.

When I checked today I found two reviews from people I don’t know. How exciting! Here’s what they’ve said:

If a cancer diagnosis feels like too much to bear, you’ll find solid comfort here. The exercises are quick and easy to perform. Yet they are profound and will produce lasting results. McGowan’s book is filled with wisdom that can only have come from one intimately familiar with the traumatizing effects of cancer diagnosis and treatment. I strongly urge you to buy this book. You’ll be glad you did and will, like me, refer to it for years to come. This book is a rare find, and the author deserves praise.

And this:

This book ticks all the boxes for handling the fear of recurrence that is part of all cancer patients’ lives after diagnosis.
It is written clearly and cuts through all the fog that surrounds us when we feel overwhelmed.
As a breast cancer survivor, I think Free from Fear should be on everyone’s Important Items list.
It is an exceptional read from someone who has been there, and understands.

Over on the Breast Cancer Network Australia site I’m also getting some really great feedback. Time to exhale.

You see, the thing is, even if I now get negative responses, or even if I never sell another copy of the book, it’s all been worth it.

Maybe I should write another one 😀

Here’s the Australian link (Kindle only)
Free From Fear on Amazon.au

Here’s the US site where you can also get the paperback.
Free From Fear on Amazon

There’s a promotion coming up on the 19th of June when the Kindle version will be available for free for three days. I’m celebrating four years since that visit to Breastscreen found three triple negative tumours, so it seemed like a good way to celebrate.

Thanks so much to everyone for all of your support. I couldn’t have done it without you. ❤

A Day of Rest

I might be about to officially enter the ranks of ‘old person’. I’m going to write about something we used to do when I was young that doesn’t happen anymore. ‘In my day…..’

Please don’t misunderstand me. I’m generally not sentimental about the past. I think our species has come a long way in the last fifty or so years. We are, on the whole, less violent, more tolerant and more interested in family and community than we are in power or the accumulation of personal possessions.

But I miss Sundays.

When I was a kid the shops were closed on Sunday. Saturday was the day you went shopping. If you were fortunate enough to live in a country town you also spent a lot of time saying hello to other people, stopping for a polite chat with those that weren’t close friends, but were part of your community. A lot of people also relegated time on Saturdays to cleaning the house or mowing the lawn.

Sundays were for resting.

For those that were members of a church or other religious congregation, Sundays were a day of gathering and worship. For everyone else there were the secular traditions; a Sunday roast with immediate or extended family, a walk or a nap after lunch, a quiet corner with a good book and an early night so we were all well rested for the week to come.

I wonder to what extent the chronic stress, anxiety and depression that now plagues us can be traced to the introduction of Sunday trading. You can now shop seven days a week. Thanks to online shopping, you can now shop 24 hours a day.

Marketing has always played with human psychology. It’s designed to make us want what we didn’t know we wanted. Its primary weapons are greed and anxiety. It seeks to convince us that more stuff will make us happier, more attractive, more successful. Even though we know in our hearts that this is untrue, we buy anyway.

This week three things bubbled to the surface of my world. The first was a piece about two studies into human behaviour that have been running for around 70 years. They’ve been tracking participants since they were kids at college in the USA. They can now tell us what it is that leads to people declaring their lives successful and happy. It’s connection to other people. Imagine! Not wealth or power or fame. It’s all about the quality of your relationships with others.

The next bubble was an article about resilience. Researchers are recommending that all the techniques for dealing with trauma and stress are of little benefit to us if we don’t take time to rest and recharge. It’s the quality of our time out that makes the difference.

How interesting that both pieces of research seem to be stating the glaringly obvious.

The final bubble in this week’s mix was a tiny purple flower that appeared on Facebook. It allowed us to express our gratitude. In addition to indicating that we liked or loved something, or were amused, amazed or angered by it, we could show our gratitude. A few days after it was introduced it was gone. There’s a petition to bring it back. I loved it. So did a lot of other people.

The research into expressing gratitude shows us that doing it regularly is good for us. It helps us to be happier with what we have. It pushes back against the marketing onslaught and allows us to look around our existing environment and appreciate that, for most of us, we already have enough. Gratitude also reminds us that the things that matter most to us are our relationships with other people, the opportunities we have to connect with nature and fun we have when we take time out from work.

I wonder if there’s a group of highly paid psychologists somewhere, recommending the Facebook owners avoid anything that encourages people to express gratitude. It can’t be good for business. If we are focusing on what we have and the importance of relationships and experiences over things, we are surely much less likely to want to spend money on things we didn’t need in the first place. We might even decide to spend less time on Facebook.

For my part, I’m signing the petition to bring back the grateful flower, I’m continuing to limit Facebook to no more than an hour in the morning and I’m spending time each Sunday recording seven things I’m grateful for.

I’m also reinstating a commitment to Sunday as a day of rest. That might mean lunch on the verandah with good friends or just going for a relaxing walk with my husband. There will definitely be more reading and the occasional trip to the movies. I also want to spend more time sitting in the garden and just enjoying it, rather than planting, weeding and mulching. It’s not that I don’t enjoy the gardening. It’s that I want to stop and appreciate the outcome.

I hope this week you’ll find some time to rest and recover. Maybe it’s time to reflect on your achievements or the quality of your close relationships. Maybe it’s escaping into a book or a movie. Whatever you decide to do, know that you’re doing your mind, your body and your spirit a favour. Rest is undervalued. I think it’s time we turned that around.

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.

A bit of a book

Hi everyone,
As most of you know, I’m busy working on a book about dealing with fear of recurrence. It’s a huge problem for most people that have survived cancer and the one I get asked about the most.

I’m still playing around with what to call it but at this stage the working title is ‘Worried Sick by Cancer’. I thought you might like a bit of a sample from the opening chapters, so here’s a taster:

The downward spiral of distraction

Just about everything I’ve read about dealing with fear of recurrence recommends distraction as a strategy. We’re told to go for a walk, watch a movie, play with the dog or bury our attention in a new hobby.

Some people distract themselves with healthy activities and others use food or drugs or risk taking to try and conquer their fears. Distraction is a ‘flight’ response to our fear.

All forms of distraction will work some of the time and there are some particular types of distraction that are really useful (more on that later) but for the most part, distraction isn’t a reliable response to fear.

Let’s go through this step-by-step.

You’re facing the fear that your cancer will come back and so you try to distract yourself. You go for a walk, watch some television, maybe phone a friend. If you’re like most people the fear comes with you.

You find yourself experiencing a cycle; a little bit of distraction followed by a little bit of fear. You notice the distraction isn’t working. This makes you even more anxious. You don’t want to be fearful and now you’re anxious about being fearful.

You stick with distraction and perhaps even change activities in the hope of stopping yourself from being frightened. It doesn’t work. Or it works just a little bit and then it doesn’t work. Pushing your fear away is like trying to hold it at arms length. It takes strength and effort and it makes your arm tired.

Sooner or later you need to stop trying to push that fear away and then it’s right back in your face again. So you have another go at trying to push the fear away. This is a bit like trying to hold it above your head or behind your back but you know you’re still going to get tired. You’re aware of the tension in your body as you try not to feel your fear.

Now you notice that the activity you’re using to distract yourself is not a source of pleasure. Using it as a distraction has sucked the joy from it. It’s as if you’re doing it with one hand while you use the other hand to push away the fear. You can’t give the activity in front of you your full attention because you need to make sure you keep that fear at arms length.

You notice that even though you’re trying really hard to distract yourself, the fear keeps creeping back into everything you do. Sometimes you get short bursts of time when you stop thinking about the fear, and then you notice you’re not thinking about the fear, which makes you think about the fear again.

You’re frustrated. You’re anxious about being frustrated and fearful about being anxious. The thought occurs to you that feeling this way isn’t good for your health and now you’re really upset! What if the fear of cancer is actually contributing to the risk of cancer!

At this point your fear might escalate, or it might shift into one of the many emotions that grow out of fear. These include the evil twins, worry and anxiety. Both recruit the phrase ‘what if’ to amplify your fear. You might also find yourself feeling angry, frustrated or annoyed. These emotions are a reaction to feeling out of control and fear is their foundation.

Does any of this sound familiar?

Most of us find distraction somewhat useful some of the time. You might be one of those lucky people that can just switch off, but for most of us, distraction is not an effective way to respond to fear.

Distraction is a bit like trying to pat your head and rub your belly at the same time. With practice, you can do it, but it’s not going to become easy or fun. You might develop some pride in your ability to do two things at once. That’s understandable. But you’re still caught in a slow, downward spiral.

Here’s why I think distraction doesn’t work for most people; Remember what I said about your mind trying to keep you safe? Distraction means you’re not listening. Your mind is sending you an important message about staying alive and you’re ignoring it. What does your mind do? It gets louder!

It’s possible that some of our ancestors never felt fear but they almost certainly got killed and eaten. The nervous and frightened ancestors had much better survival odds. We’ve evolved to feel fear and to pay attention to it. When we try to use distraction to avoid our fear it’s only reasonable that our very clever brain will keep ramping up the fear factor to get out attention. After all, it’s the reason our ancestors survived.

The most important thing to remember about your fear that the cancer will come back is this; your fears are not irrational.

You’ve had one of the biggest frights of your life. It was not imaginary. It was real. You’ve had several more frights along the way, probably involving test results, medical procedures and even the unexpected reactions of people. You have had a really, really big fright!

Your highly evolved brain wants to stop you from ever being that frightened again. It wants to make sure you never put your precious life in that much danger again. You’ve correctly identified a major risk to your survival and your mind wants you to pay attention.

Instead of helping you to deal with your fear of recurrence, distraction does exactly what it has always done. It momentarily takes your mind off something. But your mind doesn’t want to forget about cancer. Your mind wants to warn you. So eventually that fear is back up in your face.

Many people describe this as feeling like they are stuck. They get periods of time when things seem almost back to normal and then the fear sneaks up on them, or ambushes them when they’re not expecting it. The methods I’m going to teach you will help you to overcome this pattern.

For some, fear becomes a downward spiral. Each time they experience fear and an inability to cope with it, they repeat a pattern of behaviour. It might be that they reach for drugs or alcohol, experience a panic attack or find themselves feeling tearful or angry. Each experience of fear sends them back around in a circle.

Their mind establishes a kind of neural loop, and this pattern becomes a well-worn track. They now have a one-track mind when it comes to responding to fear and that track leads them to an increasingly frightening place. If this is you, I can show you how to fix this.

Please take some time to think about the extent to which you’ve used distraction to deal with your fears. How has that worked for you? Is it a reliable way to deal with worry or do you find yourself cycling back through fear again?

There’s nothing wrong with using distraction if you’ve found it effective. It’s just that most people don’t. I’ll teach you a better way of dealing with your fears so that you can return to the activities you enjoy for their own sake, and not as an escape for your mind’s legitimate concerns for your safety.

* * * *

(c)2017
M J McGowan