The Post Chemo Brain

I’ve had some interesting insights lately into what has happened to my brain since treatment. I was asked by Dan Palmer from ‘Making Permaculture Stronger’ to talk about how I apply permaculture design principles. He’s a joy to speak with, and asks the kinds of questions that stretch my mind. During the interview I talked about soft systems methodology as I understood it and Dan commented that my understanding differed from his. Following the interview I googled it. Sure enough, the articles and diagrams I found to explain soft systems bore no resemblance whatsoever to my understanding of it! What was going on? How could I be so certain about this knowledge and yet so wrong?

I think it’s something to do with chemotherapy. Chemotherapy is like a wildfire that consumes a huge chunk of cognitive ability and what grows after it continues to surprise me. My brain was not commonplace to start with (and I suspect that if I had been born into this generation I may have been diagnosed as mildly autistic) so this new version seems to be some kind of unusual evolution from that.

I feel as if the chemotherapy burnt away all the detail and allowed me to see the underlying structure in things. It also seems to have fused different categories of knowledge together in unusual ways. Following treatment I had difficulty remembering my phone number and I intentionally pursued ways to rebuild my brain. That included rereading and relearning things I had known well before treatment. I enrolled in permaculture courses because I loved the subject and once understood it well, but found that post-treatment I struggled to articulate even the basic principles. Sure enough, the neural pathways started to rebuild, sometimes connecting with a flash of insight.

I pause here to apologise to the very tolerant teachers on the Milkwood permaculture courses that tolerated by often excited interruptions to their excellent training. I must have been one of the most disruptive students ever, and yet you remained empathetic. Thank you. I am deeply grateful.

It seems that like a forest after a fire I am creating something new from the devastation. It’s hard to say. I can’t return to thinking the way I used to think so I have no honest comparison. I do know that as I recovered from treatment I intentionally designed my own pathways back to health. I’m starting to suspect that I modelled the rebuild on permaculture. It seems that I may have bundled some of my previous knowledge together and developed some new and unusual connections. I feel like this evolution of my brain is a new and improved version. I allow for the possibility that my thinking is actually very ordinary, but just novel to me because my cognitive function was so poor for a couple of years. I may just be a three year old discovering the joy of twirling around in circles.

In any case, it’s great fun to think and explore and design and create. I am perhaps the bird that broke its wings only to rediscover the joy of flight. I have a new appreciation that can only come from spending time unable to fly. I dip and swerve and soar for the sheer joy of it, and delight in the company of anyone that wants to play along side me. I feel like an eagle. I may be just a delusional sparrow, but this does not in any way detract from the joy of flight.

PS: Thank you to everyone that has remained interested in this blog and my apologies for not writing more frequently. I’ve been busy. If you enjoy my writing and want to read about something other than cancer I have another site here:
Smarter than crows

I’ll be copying this post to there, but everything else on that site is different to this one. It’s kind of a parking space for my new brain.

Advertisements

Foobs

On the 8th of August 2013 I had both of my breasts surgically removed. My ‘breast conserving’ treatment for triple negative breast cancer had not been successful and pathology on the most recently removed slice showed active invasive cancer. For various reasons (I’ve detailed these previously for anyone who is interested) I chose not to have any kind of reconstruction. I also chose to to worry about wearing any kind of prosthetic device to give the appearance of breasts.

Fake boobs (aka ‘foobs’) were something I was always prepared to consider, but initially my huge wounds from my F cup breasts meant I was much more comfortable without a bra and by the time I healed I had noticed something very surprising: Most people didn’t notice I’d had my breasts removed! For those that don’t understand sizing, and F cup is almost a kilogram of breast tissue. Think grapefruit sized. Big grapefruit sized. It still happens occasionally; I run into someone I haven’t seen since before the surgery and when I tell them they suddenly look at my chest and gasp. It turns out, we mostly look at people’s faces and not their chests.

I suppose my years of yoga played a part in my decision. Thanks to strong chest muscles I didn’t have the concave appearance that can be an issue for many women post-mastectomy. I also spent some time choosing clothing that suited my new look. After years of wearing a bra I rejoiced in the comfort and freedom of not needing one. I gathered an impressive collection of scarves and loose structured jackets. I figured out that handkerchief hemlines and low-cut necklines needed to go, but slim line skirts and pants, shoulder detail and cowl necks were suddenly flattering. I was happily ‘flat and fabulous’.

It came as a surprise to friends when I decided to try foobs. My first attempts involved the soft forms and bra I was given post surgery. These rode up and looked like I’d borrowed the breasts of a teenager. I also found myself adjusting them and worrying about them falling out at inopportune moments. Boob soup anyone? My decision to try them at all was prompted by my experience shopping for formal wear. My daughter is getting married next year and as mother-of-the-bride I’m going to need to get into some kind of glorious frock. The formal wear choices for flat-chested women are not impressive. A flattering chiffon pants suit was deemed ‘too casual’ by my daughter and the beaded silver dress I already own and love looked strange. What you notice most in fitted clothes when you don’t have boobs is your tummy!

I was also aware that while people look at your face in real life, photos are a different matter. I decided to get professionally fitted for prosthetics. I didn’t book anything or make any plans, other than thinking I would get around to it before the wedding in June 2018.

Recently I had my final visit with my oncologist. That means I’m four and a half years since diagnosis (woohoo!) and I only have one visit left with my surgeon before I am officially at the end of treatment. My oncologist still looks at me with disbelief, wondering how I managed to survive what I now know was a likely death sentence. She smiles and shakes her head and tells me to just keep doing whatever I have been doing. I give her a copy of my book and she hugs me.

After this appointment I find myself in the city, feeling like I should do something to mark this milestone, and it occurs to me that I am close to Leila O’Toole, the specialist supplier and fitter of breast forms and post-mastectomy lingerie. I’d read great reviews about them following surgery. I look them up on my phone and nervously give them a call, half expecting to be told that I need to make an appointment well in advance. A very pleasant woman on the phone tells me to come right over.

I negotiate the very slow and crowded lift to arrive at their suite of rooms on level 8 of the Dymocks building in Sydney. There are four or five women of various ages, including one gorgeous young woman with bright purple hair. Pauline is closer to my age and shows me into a fitting room. She needs to look at my chest to know how to fit me, and runs a tape measure around me. We discuss size and both agree that I do not want an F cup. The real ones were heavy and sometimes cumbersome. Something smaller that suits my body shape please.

The first bra and prosthetics look fine to me. Okay, it looks like I’m wearing fake boobs but I expected that. It’s an odd feeling to be back in a bra after all these years. Pauline has what is obviously her standard spiel about how wearing foobs (she calls them ‘breast forms’) will help my balance and posture, and how most clothing looks better with them before adding, “Well let’s be honest, all clothing.” When I tell her it’s been over three years since my surgery she’s shocked. Somehow I’ve managed to dress myself and not to topple over without them! I know she means well and I’m sure my circumstances are unusual. I’m guessing they usually see people soon after surgery or not at all.

Pauline recommends I try the next size up. Visually there doesn’t seem to be a lot of difference but the minute I put these on I can see the improvement. A good prosthetic should sit naturally against the chest. If I put my hand on my collarbone and slide it downwards there’s a very natural slope from my chest muscle to the prosthetic. I put a cotton singlet on and I am startled by how real these look. It is clearly worth being professionally fitted.

The breast forms are silicone with a microfibre backing. They are designed to also be used by women that have only had one breast removed which means they weigh what breasts would weigh. The feel a bit like memory foam and are pleasant to touch. Pauline tells me that the forms will also protect my chest and I appreciate this. It can be risky to hug people, particularly if I’m wearing chunky jewellery, and foobs will give me some protective padding.

The bras are designed with nice wide sections on the straps so they don’t dig into the shoulders (why couldn’t I get bras like this when I had breasts?) and have a pocket sewn into them so the foob doesn’t fall out. Once they are in the bra, you can move them about a bit until you’re happy with how they sit, just like you would your own breasts.

I leave with two breast forms and two bras. The first is a practical, cream coloured bra that will be smooth under t-shirts and the second is black and lacy. Pauline asks if I’d like to leave the black one on. I decide to surprise my husband by wearing it home.

I’ve now taken the foobs out a few times. I’ve noticed that once they have been on for a few hours my body strangely registers them as part of me. I suppose after all those years of having breasts this in not surprising. Of course they are numb, but then surgically reconstructed breasts are numb too. The other thing I’ve noticed is that people still don’t notice. I had a get together with some brilliant women recently and towards the end of the day I asked what they thought of my prosthetics. Once I drew attention to them there were lots of compliments along with requests to touch them (but not in a creepy way!). There was general agreement that they look very natural. There was also unanimous agreement that, although we’d been together for several hours, nobody had noticed them until I pointed them out. This never ceases to surprise me. One woman commented, “I knew something was different but I thought maybe you’d had your hair cut.”

Wearing foobs comes with all the inconvenience of wearing a bra. In hot weather they are as uncomfortable as the real thing. I’m glad I can take them off. I’m also happy to have the option of not wearing them when I’m doing yoga or working in the garden. The real ones were a bit of a nuisance in both circumstances.

Having seen the difference a small change in size can make to the appearance of foobs, I now marvel at the skill of surgeons that provide alternatives from body tissue or silicone implants. I can understand why many women have a number of revisions (additional surgery) when a small difference in size can have a significant impact on appearance. I remain very happy with my personal decision not to put my body through that. I respect any woman’s decision to go down that path, but having perfectly sized foobs that I can take off at the end of the night is definitely a better option for me. So is just being happy in my own skin and not wearing a bra.

I think of my foobs as being like any other fashion accessory that I use when I dress up. I won’t be wearing them all the time, any more than I would wear high heels or dangly ear-rings, but it’s nice to have them as part of an outfit when I choose. I can see what Pauline meant about some outfits just looking better with a bit of a curve at the chest. I don’t agree that this is true of all outfits. There are plenty of naturally small-breasted women on the planet and lots of beautiful clothing designed for them.

If you’re considering foobs then I would recommend a professional fitting. Some areas have a mobile service that will come to your home. The full cost of the breast forms was refunded by Medicare (the government health fund in Australia) and my private health insurance (Medibank Private) covered $70 towards the cost of each bra. The government will cover me for a new pair of breast forms every two years. I might try some of the light weight forms for swimwear next time. Leila O’Toole also have a wonderful selection of swimwear and I admit it has been particularly difficult to find nice swimmers. I wonder if mastectomy swimwear is covered by my health insurer.

Caring for breast forms is simple. “Wash them like you would your own skin,” advises Pauline. “We like to keep it simple.” The front of the form is silicone and will towel dry. The microfibre backing takes a bit longer. If you’re any where near Sydney and would like to meet a great team of people with excellent product range and knowledge then I’d happily recommend Leila O’Toole. Here’s a link to their website. Once you know your size you can also mail order from them.

Leila O’Toole

Are you wondering how my husband reacted when I arrived home? He noticed I was carrying a very large unmarked shopping bag (foobs each come in a large storage box to hold their shape) and asked what I’d bought. “It’s a surprise,” I told him, “I’ll show you when we get home.” Yep, he didn’t notice that I was wearing foobs. Not when he hugged me, not when I put the seat belt on and not until I actually took my shirt off when we got home. When I asked him why he thought he didn’t even see them, he said this: “I don’t see you as parts. I love all of you. I just see all of you. You’re always beautiful to me.” He’s probably a huge part of why my recovery did not require foobs.

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.

 

 

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.