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

 

 

 

Advertisements

Let’s have another conversation about vaginas

Following on from my last post, today was my first appointment with the gynaecologist to discuss vaginal atrophy. By a happy coincidence, it turns out that Dr Metawa is one of the two doctors that introduced the Mona Lisa touch therapy to Australia. He tells me that when he first started offering it, he contacted many of the cancer groups. It is his view that this treatment should be offered a a routine part of cancer treatment where menopausal symptoms are often induced. He shakes his head and tells me that they were skeptical and didn’t believe the therapy would work.

Since then it has become more broadly available and the cost has come down, but it is still too expensive for many people. I tell him my story, about my GP telling me I had vaginal atrophy and not bothering to let me know about laser therapy. “It’s cultural,” he replies in his clearly not-Australian-born accent. “In Australia there is a great reluctance to talk about vaginal health.”

Why is this? The doctor explains that vaginal atrophy results in the slow collapse of the vagina, often leaving women with symptoms of urinary incontinence, higher risk of urinary tract infections, higher incidence of prolapse (where inside bits become outside bits), and in some cases, irritation or pain so sever that patients have trouble walking. But we’re Australian, so let’s not talk about vaginas.

Then, of course, there’s intercourse, which we also don’t like talking about unless we’re using it as an analogy for something being broken. We have not trouble at all saying something is ‘fucked’ but we cringe at any conversation about actual intercourse and whether or not it’s still comfortable. I know, I’m generalising here and those of us from backgrounds like nursing or policing sex crimes are much less squeamish. Even so, I cannot recall ever having a single conversation with a girlfriend about our vaginas.

Dr Metawa thinks that discomfort during intercourse is the least significant issue when it comes to vaginal atrophy. He’s not diminishing the importance of my sex life. He says this in a way that means “There are so many other terrible things that come with vaginal atrophy that this is way down the list.”

The doctor ushers me into his examination suite and gives me some privacy while I take off everything below the waist. He returns after knocking, and asks me to put my legs up into the stirrups. He tells me that I’ll be able to follow the examination on the television screen attached to the chair, if I wish. Sure. Why not? Let’s have a good look at vaginal atrophy.

He turns on the camera and tells me that, of course, the image of my vagina is magnified. “Oh that’s good news,” I respond, “Or I’m in real trouble!” He chuckles like he’s never heard this one before and I decide I like him. Next up, vivid colour images of my vagina. (I can’t help noticing I’ve got a grey hair) and  the good doctor confirms that I have advanced vaginal atrophy. He explains that the vaginal birth of my daughter, twenty four years ago, stretched the skin and that’s why it has taken so long after chemotherapy for the atrophy to become apparent. If I’d had a caesarean birth, or never had children, it would have turned up sooner.

Dr Metawa advised me that I am a good candidate for the Mona Lisa Touch Therapy. He’s pleased that I’m not on any anti-oestrogen medication as this can make atrophy much worse, and treatment not as straight forward. He still treats women on anti-oestrogen medication so if you are in that category it is still worth seeing someone about this treatment.

I’m booked in for my first session on Friday. I’ve been warned that this one can be uncomfortable, and even painful, because the vagina is dry and the walls are thin. The good news is it will be all uphill from here, with little or no discomfort for my second and third treatments over the next couple of months. Once the three treatment are completed, the doctor will assess the condition of my vagina to determine if tone has been restored. I may need one more treatment. I am told I can expect a full recovery from the atrophy. I will not need to use any lubricant, inside or outside my vagina and I can also expect the associated incontinence issues to resolve.

Once we achieve OV (my abbreviation for ‘optimal vagina) I’ll have a followup at three months and then another at six months. After that, I’m told it’s best to just monitor vaginal tone and to book in for a top up as needed. “Better to have one treatment sooner than several later.” This seems like good advice. Some people only need one top up a year and others need two or three. Vaginas are all different.

There’s no doubt that this is a significant investment. I think it’s entirely worth it, particularly as I now know that without it I can expect “full collapse” of my vagina. I’ll post again after my first session on Friday.

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.

Dying to Know Day

In Australia, the 8th of August is ‘Dying to Know Day’. It’s a concept that a lot of people find confronting. People are encouraged to host events where they sit around and talk about, well, dying. Here’s a link:

D2KDay

I first became aware of it about six or seven years ago. I met someone on a course who was involved in organising a kind of coffee-and-nice-chat-about-death event. At the time I was both surprised and curious. I didn’t have any objection to talking about death but I didn’t understand why we needed a day for it. She explained that some years before she had experienced the still birth of her first child. The event had left her devastated in a way that I am certain can only be understood by a woman who has lived through nine months of pregnancy and expectation only to be given such crushingly sad news.

She told me that one of the most difficult things was finding anyone prepared to talk with her about the death of her baby. People shut down, stayed away or changed the subject. This not only left her feeling isolated and unsupported, but feeling as if her child’s death meant nothing to other people; that it was best to just pretend she had never existed at all.

The Buddhists have an interesting approach to death. They believe that until we can honestly face the reality of our own existence (that we must all die) we cannot live a fulfilling life. They make the observation that those who have faced death, and understood the finite nature of all things, have a deeper appreciation of what really matters.

I agree.

I worked as a police officer for many years. I saw more deaths than I can remember. All kinds of death. Babies that mysteriously stopped breathing, people that had been the victims of violence (often at the hands of someone they loved) and those that just happened to be in the wrong place at the wrong time. I’ve seen the bodies of very old people that passed away in care facilities with only a drawer full of possessions and I’ve seen the incredibly privileged and wealthy looking just as dead.

I’ve learnt about the death rituals of a handful of different cultures so that I didn’t cause offence. Some of these are very moving. The Jewish people all occupy a simple, rope handled coffin made of pine or particle board when they die. It’s a symbol that no matter how rich or clever or famous we were in life, we are all equal in death.

So you would have thought, having spent so much of my working life dealing with it, that death had no capacity to shock me.

And yet, when I received a diagnosis of a potentially terminal illness I went into shock. Of course I understood that I would die one day, but one day had always felt like it was a long way off, and that there was plenty of time to figure everything out when I got closer to it.

There are so many reasons why we need to talk about death. There’s the practical stuff, like how we feel about organ donation, and whether we’re okay with cremation. There’s the personal stuff, like what we want to have happen at our funeral and who we’d like to receive any accumulated wealth or possessions. These are the relatively easy conversations.

The more difficult ones are about where we would like to die and how we would like to die. Australia has a shortage of hospices and almost no support for those wishing to die at home, and yet most Australians do not want to die in a hospital. Hospitals are places where people go for treatment, where they get their recovery monitored and their drugs administered. They are not designed for dying. When more of us start thinking and talking about where and how we would like to die, this situation will improve. We’ll start talking to politicians about better funding for death services, so that we can have the kind of death we choose.

We might even see a change to laws that prevent people from seeking medical assistance to end their lives. I respect the opinions of those that would never make this choice and I understand all of their opposition to assisted dying. I promise to never force anyone to make that choice against their will, or their faith. I also ask them to extend to me the same respect for my own beliefs. I’ve seen what death from cancer can look like. I have no fear of death, it’s dying that terrifies me. I would like to be able to legally ask a doctor to speed that process up if I find myself caught in a low, slow, humiliating decline towards an inevitable outcome. It’s okay if you don’t agree with me. Just please don’t condemn me to the agony my father endured.

Death is frightening. By avoiding it we can stay floating in that delusional bubble where we behave as if we are going to live forever, and that’s precisely why we need to have the conversation. Life is short. None of us know the time or the manner of our death.

I contemplate death on a fairly regular basis now. I dodged a bullet, for now, but somewhere in my future there’s is another one with my name on it. There’s one for you too. Knowing this had made me very particular about how I spend my time. It’s much easier for me to be clear about who is important to me and what I want to do with whatever is left of my life. Death is helpful for that.

And so on the 8th of August I would invite you have a conversation with the people that love you about death. Talk about your death, and their death and whether or not any of you have ever seen death. Talk about where and how you would prefer to die and who you would like to be there (assuming you get a choice). Talk about the practicalities but don’t miss the opportunity to have a deep and honest conversation about why we don’t talk about death more often.

And why we should.

The stuff we put on our bodies

Yesterday my daughter sent me a link to an article. Researches have established a causal connection between dark hair dyes, chemical hair relaxers and breast cancer. Here’s the link:

Breast cancer and hair products

I started finding grey hairs when I was in my early 20’s and started dyeing my hair shortly after that. Because I was naturally dark brown, I chose to dye it to something close to my natural colour (apart from a scary auburn period during the 80’s, but hey, it was the 80’s!). That’s more than 30 years of what my husband referred to as ‘soaking your head in toxic chemicals’ about every six weeks.

It was at Graham’s suggestion that I stopped colouring it. I also shaved it off to raise money for blood cancers, because this seemed like a great way to break the dying addiction and support a charity. Two years later I lost it all again thanks to chemotherapy.

I’m now naturally grey. To my surprise and delight I get more compliments about my hair than I have at any time in my life. It’s got this great thing going on that looks like I’ve paid a fortune for highlights. I haven’t. It just grew back like this. Meanwhile I see lots of girls in their twenty-somethings colouring their hair grey!

It has always seemed odd to me that we have strict laws about food and very few about cosmetics. We know that the skin is great at absorbing chemicals. That’s why nicotine patches work. It’s why you can now get transdermal patches for all kinds of medical conditions. They allow you to absorb chemicals over a long period of time rather than getting it all at once from an injection or a pill.

So why is don’t we have the same kind of regulations around cosmetics? We are essentially consuming everything we put on our bodies. It turns out that a large number of cosmetic products contain known carcinogens and that even those that don’t contain chemicals with unknown risks to our health. Yuck.

And it’s not just cosmetics we need to be concerned about. It’s everything that comes into contact with our bodies. Take triclosan. You’ll see it listed as an antibacterial ingredient in hand sanitiser, toothpaste, dish washing detergent and liquid soap. Pretty much anything claiming to be ‘antibacterial’ either includes triclosan or has been treated with it, including furniture coverings, bedding and underwear. Triclosan is a hormone disruptor. Here’s an extract from the Wikipedia article about it.

Because of potential health concerns spanning from antimicrobial resistance to endocrine disruption, triclosan has been designated as a “contaminant of emerging concern (CEC)”, meaning it is under investigation for public health risk. “Emerging contaminants” can be broadly defined as any synthetic or naturally occurring chemical or any microorganism that is not commonly monitored in the environment but has the potential to enter the environment and cause known or suspected adverse ecological and(or) human health effects.^[34] Triclosan is thought to accumulate in wastewater and return to drinking water, thus propagating a buildup that could cause increasing effects with ongoing use.^[35]

In an article from May 2015 on the current status of triclosan, Gurpreet Singh Dhillon and colleagues cite various studies that report “emerging health concerns related to the use of TCS such as microbial resistance, dermal irritations, endocrine disruption, higher incidence of allergies, altered thyroid hormone metabolism and tumors development due to TCS and its by-products”.^[36]

 

Interestingly, it’s still considered safe ‘in small amounts’ but how much is too much? If you’re working in a hospital and sanitising your hands several times a day, wouldn’t you be absorbing a huge amount of triclosan? And here’s the kicker; it doesn’t work as well as soap and water when it comes to cleaning your hands.

Of course this is just one example of one chemical. The list of potentially toxic substances that wind up in our homes is a long one. You can spend a disturbing time googling and reading for more information. This chart is a pretty comprehensive one, but it only has household products, not cosmetics or all personal care products:

Toxic products in the home

If you’d like to really spoil your day then here’s a couple of articles about those:

The 20 most harmful ingredients in beauty products

15 toxic beauty products that most women use anyway

So what to do? Well, educating ourselves is the first step. Know that ‘organic’ is nonsense then it comes to beauty products or household cleaners. It might just mean they’ve included a few organic ingredients with the chemicals. It might mean they’re using the scientific definition of ‘organic’ (hint; everything is organic!) rather than the commercial use which is supposed to indicate that food has been grown or manufactured using only a limited range of approved chemicals (another hint; there is no such thing as ‘chemical free’ because everything is made of chemicals.)

It’s a good idea to read labels and choose products that avoid the known nasties. True, the thing you buy could contain something that gets proven to cause disease next week (or next year, or whenever) but at least you’ll have limited your exposure to things that are known to be bad for you. This might mean having slightly less shiny hair, but you’re worth it.

Know that most liquid things that come in plastic bottles will also be contaminated by the plastic bottle. If you want to go hard core you might consider decanting shampoo and conditioner into glass or ceramic dispensers (most people won’t) and give up liquid soaps and body wash products completely in favour of a bar of soap.

Go natural. Okay, it’s not practical for a lot of women because there’s still this weird expectation that we all look a certain way, a requirement that strangely does not apply to men. If you have to wear makeup, or you love to wear makeup, you might want to avoid cheaper brands, opt for a less ‘made up’ look so that you wear less, and choose things with fewer ingredients and none of the nasties. A simple rule of thumb is to buy things labelled ‘fragrance free’ or ‘sensitive skin’ because they will have less dangerous chemicals than the perfumed varieties.

And finally, have a long hard think about your hair and what you would like to do with it. Now that there’s a clear link between dark hair dye, chemical straighteners and cancer, do you really want to keep putting that stuff on your head. If the answer is ‘yes’ then perhaps consider hunting for safer products and going lighter. Or perhaps it’s time to get a really flattering cut from a great hairdresser using all the money you’re going to save on hair products. There’s an obvious pun here about dying for dyeing but I’m not going there.

If you are a man reading this then please start telling the women in your life how great they look when they haven’t put makeup on their faces. Love them as they are and support their decisions about kicking the dyeing. I read a comment from a woman recently who said her husband tells her to colour her hair so she doesn’t look old. Seriously.

I’m pragmatic about all of this. A ‘chemical free’ home is almost impossible to achieve. If you don’t have tank water then there’s chlorine in your water and it evaporates into your home every time you shower. But you can reduce the toxic load by making smart choices about what you choose to use.

As a final tip, avoid redecorating disease. Lounges, cushions and soft furnishings like mattresses are typically treated with flame retardants that are, you guessed it, highly toxic. Get something with washable covers or just keep the things you already have until they fall apart. You’re probably rolling your eyes at all this. I don’t blame you.

That’s enough about chemicals. I’m off to the garden to put my feet into some healthy dirt. Apparently, there’s something in the soil biome that helps us to avoid depression. It turns out that lots of bacteria are beneficial to human life and that trying to kill them all off with disinfectants, herbicides, fungicides, antibiotics and solvents was a really stupid idea. Imagine.

Should we stop talking about cancer?

This month I celebrated four years since the trip to BreastScreen that found triple negative cancer in my left breast. It’s an important milestone for me. Unlike other forms of breast cancer, the risk of recurrence drops every year I stay cancer free, right up until year five when I’m actually at the same risk as everyone else. It’s about the only positive to triple negative!

I don’t put a lot of things on my Facebook page about cancer. I have a separate page at Positive3negative for that. I separated out the cancer related stuff fairly early on. I realised that some people didn’t want to read about my treatment or my recovery. I think I also wanted to identify the cancer as being something apart from me, a thing that was happening to me and not who I am.

Anniversaries are different. I’m aware that my initial diagnosis prompted a lot of friends to go and get their breasts checked. This is a good thing. Early detection saved my life and in spite of a raft of negative press about mammograms, I’m definitely a fan. It’s true that there have been issues with early detection of DCIS (ductal carcinoma in situ). It’s at the lowest level of breast cancer and some argue it should actually be classified as ‘pre-cancerous’. It’s clear that many of these cases will be healed by the body without any treatment.

Of course, some of them will also go on to develop tumours and a subset of those will metastasise and ultimately kill you. The problem with DCIS is that we don’t know which versions are the self-healing ones and which are potentially fatal. There’s research going on to identify the difference and until they can do that, there will be women having surgery for DCIS that didn’t need it. Personally, I’d rather not need the surgery and have it than need it and not have it. The important thing for all women is to have as much information as possible. Some may choose not to have mammograms, or to have them less often.

In any case, for those that choose to have them, posting something that lets them know another year has gone by is the least I can do. I always get a few friends thanking me for the reminder. This year I also got a message that said:

If you keep that thought in your mind it repeats itself. Let it go and no return, by deed or thought. No one seem to learn the lessons.

Wait……what?

It was posted by someone that was once a very close friend. She rarely posts or comments on anything on Facebook. She turned up once at the very beginning of my treatment to tell me to ‘be positive’ and I haven’t seen her since. Not when I needed people to drive me to chemotherapy, not when I could have used some help around the house and not when some company during radiation would have been welcome. She was nowhere to be seen when I had two (now ironically named) breast conserving surgeries and not even a card when I was in hospital for nine days following the surgical removal of both breasts.

I could have been outraged. Fortunately, a friend that has been a true friend through all of this happened, quite coincidentally, to send me this TED talk around the same time:

Forgiveness in the age of anger

It’s worth twenty minutes of your time. There’s a lot of great advice here but the part I really loved was about the way social media seems to be full of outrage. “I can’t believe she said that!” “How could he be so rude!” “What were they thinking!”

The speaker, Brant Hansen, makes the point that our outrage is usually misplaced, particularly when someone is behaving in a manner that is entirely consistent with their past behaviour. “You can’t believe your mother behaved that way? How many years has she been behaving that way? Why can’t you believe it?”

Hansen is the author of a book called ‘Unoffendable’ where he suggests that learning not to be offended by anything can have a profound impact on our lives. I agree. When we can let go of being outraged, accept that human beings consistently behave in ways that are inconsistent with our own values and simply let that stuff go we are much better off.

I asked my ‘friend’ to explain her comment about letting go of cancer. I added this:

How about ‘congratulations on still being here four years after you were told you were probably going to die’. I have managed to defy predictions of my early death. I’m pretty sure I’m going to keep doing everything I have been doing, even if you disagree with it.

Reading that back, it’s possible to interpret that comment as outraged but it seriously wasn’t. Try reading it again in a calm voice and you’ll get my intention. I wanted it to remind this person that the reason I’m celebrating four years since my diagnosis is because I’ve worked hard at staying alive, and part of that process for me has been recognising all of the things that impact my health and taking action. I know that ignoring cancer and pretending nothing happened is an option for some people. It’s just not an option for me. Here’s her response:

That’s great. I just don’t think talking about it all the time is healthy. Let’s just leave it at that. Txting messes with people’s minds. Xx

I’m still not offended. Here’s my take. This person is clearly not comfortable with cancer. There might be some history there or she might just be one of those people that likes to avoid any reminder of her own mortality. She could either ‘unfriend’ me or hide my Facebook comments if she doesn’t want to read the very occasional posts about cancer, or she could just scroll on by, but for some reason she feels compelled to comment.

I can only conclude that it is her world view that the best way to avoid cancer is to not mention it. This makes sense. It’s entirely consistent with her behaviour. It would also explain why she has completely avoided me since my diagnosis.

I don’t routinely mention my medical history to people. In spite of the fact that I am surgically flat chested, most people don’t even notice. I could just look this way naturally. From time to time when it’s appropriate, it will be part of a conversation but usually because someone else has raised it. I get that everyone wants to move on. I do too.

Continuing to write about cancer occasionally, to offer support to the recently diagnosed, to write books about it and to maintain a Facebook page with updates on the latest research might be seen as me trying to remain the centre of attention. It’s true that I have never felt more loved than when I was in treatment. I also never, ever want to have to go through that again! I’m not ‘hanging on to it’. I’m giving back.

I know that the people that had come before me were hugely supportive to me during treatment. Reading about those that had survived triple negative inspired my own survival. There was also lots of practical advice. I’m just paying that forward. It is great to hear from people that are now in the cancer tunnel that they can see the light I’m holding. I got to here and they can too.

To be honest, there’s some self interest here too. I don’t want to forget. There were some life changing lessons in the whole experience. I know that it’s not just my cells that got replaced after chemotherapy. I feel like a completely different person. Perhaps mentioning cancer is a cypher for that; it’s a way of saying ‘You might think you know me but I’ve been through this transformational experience and I’m not that person any more.’

My husband and I shared a table at an event recently. He told the strangers sitting with us that we were celebrating a cancer anniversary. The woman next to him replied ‘At some point that stops being a thing.’ Her husband explained that she’d had breast cancer a decade before. I get it. I think it’s likely that at some point I’ll stop writing about cancer. I don’t think it’s likely that I’ll stop thinking about it and I don’t want to. It reminds me to take good care of myself. It also reminds me to share those reminders with people I love. A timely mammogram might just save a life.

And the person that thinks I should just stop mentioning it? She’s entitled to her own opinion. Hopefully she’ll keep it to herself in future.

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.