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.

 

 

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One Year Scans Are Good!

Great news. I had my one year scans last Friday and there is no sign of cancer.

Whew!

I’ve been looking and feeling great but my history tells me this is no guarantee of anything. The last time I looked and felt great we walked into the surgeon’s office expecting to be told that everything was okay and instead we got the news that I needed a mastectomy.

Appearances can be deceiving.

So I am greatly relieved to have the news that my internal health is aligned with my external appearance.

My surgeon decided that the benign lump I discovered several weeks back should be removed. “With your pathology and history there’s no such thing as a good lump.” Fair enough. So yesterday I attended her surgery and their Fellow (someone very close to being a surgeon who serves a kind of apprenticeship for a year) cut the lump out of my chest and stitched it up while we chatted about vaccines, yoga and permaculture.

The stitching was the worst part.

I had expected it to only involve a couple of stitches and a bandaid. Instead, he decided to use some heavier sutures to make sure it all stays stitched because my tissue was irradiated as part of my treatment and this makes the tissue fragile. Then there was some top stitching with a finer thread. All while fully conscious.

I’m surprised I didn’t go into shock.

I think it’s just one of the many changes that’s happened as a consequence of my treatment. I’m now a lot more at ease with medical procedures, blood and having bits of my body removed. Still, it was definitely a surreal experience.

When he finished he explained that he’d made the incision a bit larger than it needed to be so he could join it on to the smaller of my scars ‘for a better cosmetic result’. Seriously? Have you seen the pictures of my chest? I’m beyond worrying about how pretty it all looks. I wish he’d listened to me when I said I wanted the least amount of surgery and that I didn’t particularly care if I had a third scar.

Apart from really not caring so much about appearance, the scar he’s joined it to has already been opened up twice and the last time I had problems getting it to heal again. I’d really prefer he’d left it alone. I suppose it’s possible that ‘appearance’ includes avoiding puckering, in which case I’m grateful. I don’t wear a lot of skin tight clothes (except for yoga) but not having odd bumps on my chest would be my preference.

I understand that surgeons are trained to give the best appearance possible, and I applaud this shift. I used to be that a mastectomy involved heavy scaring and extensive skin grafts. Nobody worried too much about what we’d look like afterwards.

I also know they often deal with patients that say they don’t care about something only to discover post surgically that they really do.

It’s all about communication and taking a bit of extra time.

The lump will go off to pathology, just to conduct a routine biopsy, but even looking at it he was happy that it’s extremely unlikely to be cancer.

One year down and four to go.

One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

It seems like an appropriate time to post an update on my recovery and to reflect on what’s helped, what’s hindered and what needs to happen during the next year.

There will be photos, so if you’re squeamish about scars then best skip this one.

The short version; I feel great. Lately I’ve actually been feeling well, really well, for the first time since my surgery. I’m amazed by the body’s ability to heal and surprised at how long it’s taking.

If you’d asked me just after surgery how long I thought my recovery would take I would have guessed three months or so. Even one whole year later there’s still a little way to go before my body is done.

This is important.

There have been times during the last year when I’ve thought, ‘Is this as good as it gets?’ It seems to me that healing will happen for a while and then there will be a plateau where nothing much changes. I’ve come to think of these plateaus as the body taking a rest from the hard work of healing.

The whole experience has been an opportunity for me to take a hard look at my life and my habits. I suspect there are people whose recovery is passive. They wait and hope, trusting that whatever medical treatment they received will do all the work for them.

It’s been my long experience that recovery from anything needs to be active. We can support or hinder our recovery with some very simple choices, like what we put in our bodies, how much sleep we get and how much stress we’re prepared to tolerate.

I’ve been actively participating in my recovery.

I’ve cared for my skin, particularly the site of my surgery, by using a body oil after my shower. I’ve also taken care of lymphatic drainage from my left side by using gentle massage throughout the day. This area has had a lot of damage following three surgeries and radiation. While I haven’t had any signs of lymphodema, I see regular lymph drainage as an important preventative measure. I’ll be doing this for the rest of my life.

I’ve lost weight using The Fast Diet. My doctor recommended this because there are statistics showing that excess weight can contribute to breast cancer risk. Fasting also triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Anyone whose experienced triple negative breast cancer knows that we don’t have any of the new ‘wonder drugs’ available to us. Fasting seems like the best thing I can do to prevent recurrence. I’ll be doing this for the rest of my life.

Yoga has probably made the single greatest contribution to my recovery. I do at least one class a week (two when my husband joins me) and I practice at home every day. When I wake up in the morning I get dressed in my yoga gear. I have coffee and check my messages and daily schedule and then it’s straight into yoga before breakfast. I’m able to do things with my body that I couldn’t do before I was diagnosed. Of course the point of yoga is not to twist your body into increasingly difficult poses. Yoga is about integrating the mind, the body, the spirit and the breath. Yoga has helped me to love my post-cancer body and to feel strong and flexible, mentally and physically. I’ll be doing this for the rest of my life.

Massage has also been a big part of my recovery. I found a local massage therapist with specialist oncology training. As well as regularly helping me to move back into my own body she’s gently massaged my surgery site and this has greatly assisted in settling all of the nerve pain and helping me to regain sensation in that part of my body. It’s also deeply relaxing.

I was eating fairly well before diagnosis and treatment has been an opportunity to review what goes on my plate. We’re shifting towards more and more vegetarian meals. I rarely eat gluten any more and I feel better for it. I’m naturally eating less food thanks to The Fast Diet and the impact on my appetite. We’ve adopted the SLOW principles as much as possible; Seasonal, Local, Organic, Wholefoods.

I’m eating much less sugar and finding that I can’t eat anything really sweet anymore. I suspect this is because fasting has killed off the gut bacteria that trick my brain into wanting more sugar. The recent discoveries in relation to the gut biome continue to fascinate me. I’m sure we’re only just beginning to understand how important this work is for our future health. It’s certainly a strong motivator to avoid processed foods with all their additives and preservatives that prevent bacterial growth.

Thanks to a couple of visits with a psychologist with ACT (Acceptance Commitment Therapy) training and Russ Harris’s books on the subject, I’m now very clear about what’s important to me, what I value and what I want my life to stand for. To celebrate my one year anniversary I’ve enrolled in a permaculture course. There are those that would argue I don’t need this training because I’ve been practicing permaculture all of my adult life.

My friend Cecilia challenged me to ‘become a world famous permaculture teacher’ which is what motivated me to finally enrol. She’s clever. I don’t really need to become famous (nor do I want to) but I really do want to teach the skills I’ve been practicing for so many years. Permaculture is simply the best way to be human and the map for the survival of our species.

One of my favourite quotes has always been ‘Be the change you want in the world’. When I was a teenager I looked at a photograph of the planet from space showing all of the lights of civilisation and spontaneously thought ‘human cancer’. I was distressed by the damage we were doing to the planet and a sense of helplessness. For me, permaculture holds the key to healing humanity’s cancerous impact on the planet. It’s probably going to keep me well too.

So here’s my latest photos.

As you can see, I’ve come a long way since surgery.

P1070559 P1070558 P1070557 P1070556

 

 

My chest has gone from being almost completely numb to almost completely recovering sensation. I still have numbness along the scar lines and there’s an area of nerve damage above my original surgery scar (that’s the little arc high on my left side). Nerve damage feels like electricity under the skin. It’s continued to improve with massage and I’m hopeful that it will eventually disappear.

My chest still feels a little tight, as if I’ve got a large sticking plaster on it, but this has improved and I believe it will also vanish in time. For most of last year I felt like I was wearing an undersized bra (how ironic) and the tightness extended all the way across my back. That’s resolved now and I only have my chest to deal with. Yoga and massage both help with this.

I still need to remember to keep my shoulders back and to hold my body up. My doctor tells me it’s common for mastectomy patients to develop a stooped back and rounded shoulders. I suspect this is a combination of relieving that sensation of tightness and, perhaps, embarrassment at having no breasts. I regularly roll my shoulders up and back, particularly when I’m at the computer.

My neck has taken a while to adjust to the absence of two F cup breasts. Removing close to two kilos of weight left my neck and shoulders in a state of shock and once again, yoga and massage have helped. A friend showed me this neat trick; point your index finger at the sky; now bring your finger so it touches your chin and the tip of your nose; push back until you feel your neck is back in alignment. You can also push your head back firmly into a pillow when you’re in bed, or the head rest when you’re in a car. This simple exercise has had more impact on my neck pain than anything else.

As for the other side effects from treatment, I’ve also seen big improvement. I rarely experience any peripheral neuropathy in my feet. I still wake with sore hands but they warm up quickly. I need to be careful with any activity where I hold my hand in the same position for any length of time, such as drawing or sewing. My hands tends to cramp up and become painful. I haven’t given up on my body’s ability to regrow nerves. While one doctor told me I’d probably be stuck with whatever I had at twelve months post chemo, another said it can take six years for nerves to regrow. I’ve already had improvement since my twelve month mark so I’m going with option B.

I have a mild hum in my ears. This is probably also chemo related nerve damage but it could just be age. My Mum has age related hearing loss. It’s important to remember that not everything going on with our bodies is related to treatment. I don’t have that awful metallic taste in my mouth any more and I think this is also a form of peripheral neuropathy. Food tastes wonderful again, particularly straight after fasting.

I wonder to what extent the fasting has promoted healing. The science indicates that it should make a difference. In early days, I certainly noticed more rapid healing following a fast. I’ve observed that if I have any kind of skin blemish it’s usually completely healed after fast day.

As you can see from the photos, the radiation damage to my skin has greatly improved. As well as the circulatory benefits of massage, I think the regular application of rose hip oil has made a huge difference.

As you’ve probably already guessed, my mental state is great. People recovering from mastectomy are, not surprisingly, at high risk of depression. I’m very grateful that the care I’ve received and the work that I’ve done have helped me to avoid that particular complication. In many ways, depression is a worse disease than cancer and certainly at least as deadly. I think avoiding depression has involved a combination of things but particularly the information about ACT, practicing ACT and the benefits of yoga.

The most significant contribution to my state of mind has been the love and support I’ve received from so many people. Special mention must go to my beautiful husband who has continued to love and cherish me through all of this. I’m still beautiful to him. It’s an enormous advantage to have someone like that in my life and I grieve for those women that go through this on their own, or whose partners leave them during treatment.

I no longer experience ‘chemo brain’. I feel as mentally alert as I ever did. I’m also calmer, happier and less stressed than at any other time in my life.

I’m now taking stock and asking ‘What else can I do to continue with my recovery and to improve my health?’ I’ll also be doing this for the rest of my life. I believe that there is no upper limit to how well I can be. To put it another way, no matter how well recovered our bodies seems to be, there is always more we can do to improve our health.

Thanks to everyone that’s been following the blog and the accompanying Facebook page. Special thanks to those that have taken the time to let me know that something they’ve read has helped them with their own recovery. You’re the reason I keep writing.

Go well. Live well. My best wishes for your continuing recovery.

Don’t Say Don’t And Ban The Bullies

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

It started with this thought:

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

What would change?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Is There a Fast Way to Reduce Cancer Risk?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So how are we going?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All of these are WRONG. Imagine my delighted surprise!

 

One Month After Mastectomy

It’s one month today since my bilateral mastectomy. The phrase ‘bilateral mastectomy’ seems far too mild for what’s happened. I’ve had my breasts cut off.

Physically I’m healing well. The scar on my right side is neat and clean. This is my ‘healthy’ side but I decided to have this breast removed at the same time as the other one, partly because I thought I would feel better being symmetrical. I do. I also had it removed because I don’t think I would have stopped worrying about my remaining breast being a source of cancer.

I am happy with the decisions I’ve made. I’m not happy about having to make them.

My left side is puckered and the pores of my skin are noticeable. This side was treated with radiation in the earlier months of this year. The skin was never going to cope as well with surgery. I’ve been fortunate to have a well healed mastectomy scar because complications can include the wound re-opening or the tissue dying. The wound from the breast conserving surgery in July (when we discovered the invasive cancer that led to the mastectomy) is not healing well. There’s a small hole in the wound and a small amount of discharge from it. I’m seeing my surgeon on Thursday to have it ‘re-excised’, which means cut open again and rejoined.

There are two veins running down my body, starting from the ridge under the place where my breasts used to be. There’s one on each side although they are in different places. They feel like indentations under the skin, as if the vein has collapsed. There’s a name for this. Something disease. My surgeon did tell me but I’ve forgotten. It seems that both veins get pinched off during surgery to prevent bleeding. In some people they collapse. They are uncomfortable and feel a lot like the drains felt when they were under my skin post-operatively. Sometimes they are painful, as if someone has cut two lines down my torso.

(Note: This condition is called ‘Mondor’s disease’. I’m back here in February of 2016 because it’s just recurred on my left side.)

There’s still a strange intermittent sensation in my left shoulder, as if someone is jabbing me with a needle. My doctor says this is nerve pain and she’s prescribed more gabapentin. I’m only taking it at night and so far it doesn’t seem to be making much of a difference. I could take it in the morning as well but it makes me feel like I’ve had half a bottle of wine, which sounds like it might be a nice thing but it isn’t when you need to drive somewhere.

The gabapentin is also for the nerve pain in my back and chest. How ironic that one of the great benefits of a mastectomy is not having to wear a bra and yet one of the consequences is felling like I’m wearing a very tight bra! This is also a common complication of a mastectomy and it should improve with medication and time.

There’s a fluid build up on both sides. Yes, this is another common side effect. Interestingly my healthy side seems to collect more fluid than the side where I had the cancer. My doctor drained about 60mls out of the right side when I saw her last week. It feels as if it’s just filled right back up again. You can leave seromas alone and they will gradually be absorbed over a few months. There’s something about them that makes me squeamish. I’m hoping when I see the surgeon on Thursday she can drain them again and that this time they will stay drained. I suspect it’s just one of those things, like so many things, that needs time and patience.

Mentally I suppose my status is about the same as my body. Healing slowly. Not quite there yet. I still get a shock when I catch sight of myself in the mirror. I don’t look terrible. My beautiful daughter says I look slim and ‘like a fashion model’. My wonderful husband tells me I’m gorgeous. I’m just waiting for my brain to integrate this new version of my body. When I close my eyes and think of myself, I still have breasts. When I wake up in the morning I forget I don’t have them. I still feel them. They are my phantom breasts. There’s no question that I look much thinner. This is odd because, apart from the weight of my breasts, I’m no thinner than I was before the operation. A flat chest reads as ‘athletic’. I also think that looking down and seeing my tummy makes me much more likely to hold it in.

One of my friends asked me last week how I was feeling. “A bit flat.” I replied, before I realised what I was saying. Puns aside, I have felt flat. I really only had two weeks to process the news that my cancer was back and invasive. Then there was surgery and two or three weeks of just healing, recovering from the anaesthetic, letting my wounds stabilise before I lifted anything heavy and eating well to get my energy back up. It’s really only now that I’ve had the opportunity to reflect on it all.

I am now a statistical outlier.

Before all of this I knew there was one chance in four of the cancer coming back in the first five years. I knew that if I made it to five years the chances of the cancer coming back would be significantly reduced and I was looking forward to throwing a big five year anniversary party. Not only did the cancer come back, it came back just inside the first year and was already invasive when it was discovered. This is so unusual that there’s no data for it. The treatment I had should have worked. It has worked for the majority of women that have had it. The radiation oncologist speculated that I had ‘dormant DCIS’ which I found interesting because I thought the whole point of radiation was to kill off anything that wasn’t quite a cancerous cell, along with any stray cancerous cells.

My surgeon initially speculated that I might have ‘radiation resistant tissue’. This would fit with the way my skin held up so well during treatment. A couple of months ago I noticed the hair in my left armpit growing back. It’s one of the only benefits of radiation, not having to shave under that arm any more, so I was surprised. I remember thinking at the time, “I hope this doesn’t mean my radiation failed.”

At my last visit to the surgeon I asked her what she thought went wrong. I wondered about the marker clip that had been left behind during my first surgery. The calcification that showed up on the most recent mammogram appeared to be associated with the marker clip. It was trailing in a line away from the clip, and was thicker where it joined the clip, a bit like the tail of a comet. I wondered if the movement of the clip through my breast tissue might have caused scarring that increased the risk of recurrence. My surgeon replied that the clip shouldn’t move and that it wasn’t the cause of the recurrence. She had intended to remove it during the first surgery and missed the reference in the initial pathology report stating that there was no sign of the clip in the tissue sample. I missed it too. I was too anxious about the discovery of DCIS under the tumour.

The doctor that inserted the clip did say at the time that they can move. She also told me when I went back for the second surgery that it’s common practice to leave them in so that the correct area can be scanned in followup testing.

I had neo-adjuvant chemotherapy (before surgery) with the intention of treating any cancer anywhere in my body and, simultaneously, hitting the four tumours in my breast. This treatment killed three of them. When the remaining tumour was removed my surgeon did so with clear margins but obviously left behind an area of tissue that previously contained the three dead tumours. This is standard practice because it minimised the loss of breast tissue. I wonder with triple negative cancers if it might not be good practice to remove all of the effected tissue for biopsy.

I am not a doctor.

None of my speculation is meant to constitute any criticism of my medical team. I honestly believe that I’ve had the best possible treatment available. It’s my investigative background that causes me to speculate. I’m curious. I also think that my unusual circumstances are an opportunity for discoveries that might benefit other people with triple negative breast cancer. I want to know what went wrong. I want to know why this happened.

My surgeon gave me this answer: “We don’t know.”

This is the bottom line when it comes to cancer. The best available treatments work for most of the people most of the time. Inherent in that statement is the implication that some of the time they don’t work, or don’t work as well.

I am not unreasonably anxious about what this means to my survival odds. It can’t be good. You would think that having no breast tissue would mean you can’t get breast cancer but it doesn’t. Triple negative cancer notoriously recurs in scar tissue and I now have a whole lot more of that. Who knows if keeping my healthy breast would have been a better option? Who knows if keeping my high risk breast would have been less of a risk than all this scarring? The honest answer is “Nobody.”

One of the greatest complications of cancer research is the difficultly in establishing what the best choices are for any individual patient. Even something that’s been highly successful for most people might not work for me, or for you. We all bring our own genetics, histories, habits and pathologies to the treatment room.

There’s also a ‘bleeding edge’ to cancer treatment. I read the other day that they are predicting an end to chemotherapy inside ten years. It looks like the future of cancer treatment will include re-engineering your own T cells and putting them back in your body to fight the cancer. This is not science fiction. There’s a doctor in Seattle in the USA already using this technique to treat childhood leukaemia. The treatment we have available to us today is just the best available, not the best. In time there will be a cure. Every single person with cancer hopes to live long enough to receive it.

It’s possible that I could still get local recurrence. My surgeon has told me to watch for lumps under my scars, under my arms and in the ridge above my collarbone. It’s also possible that I could get metastatic disease. If I get this cancer anywhere else in my body it’s still called ‘breast cancer’ even though I don’t have breasts and that’s not where the cancer would be. Picking up metastatic disease is more difficult than spotting local recurrence. It’s most likely to happen in my bones or my brain or perhaps one of my major organs. Symptoms might be vague or non-existent. My surgeon’s advice regarding anything suspicious is to wait a couple of weeks and see if it changes or goes away.

My greatest fear is that my life is now a cycle of recurrence followed by treatment followed by recovery followed by another small island of time where I’m relatively well and able to enjoy life. Ultimately that’s followed by recurrence that can’t be treated. I am frightened.

I’m dealing with the fear by making room for it, by describing it here and by accepting that for anyone in my situation it’s a completely normal response. I’m also practicing yoga and meditation. Most importantly I’m taking time to really enjoy the things that matter to me. I’m closing my computer. I’m spending time in the garden. I’m cherishing time with my husband, my daughter and my friends and extended family. Life goes on.

It could be all my fears are for nothing. It could be that the cancer is gone forever.

We don’t know.

 

World Class Nursing

I’m back home after ten days at the Mater Hospital in North Sydney. One of the breast care nurses asked me if I would come back some time in the future to talk to staff about my experience as a patient. “Good and bad,” she said, “We benefit from hearing it all.” I told her I could only meet half of her needs.

I’m always looking for ways to improve things. It’s part of what I loved about managing around eighty staff when I was the Commander of the NSW Police Fraud Squad. You could change a system and have a huge impact on efficiency and service delivery. You could mentor a staff member and improve their performance and their life.

So when, after ten days somewhere, I’m really at a loss to criticise anything other than some minor maintenance issues you can be sure I’ve been somewhere really special.

There is love in the walls at the Mater. The hospital was started by The Sisters of Mercy and there’s a documentary on one of their channels that includes interviews with some of the elderly Sisters, some of the ‘lay’ nursing staff, and two doctors that become visibly moved when they talk about the wonderful legacy of this exceptional place.

The legacy continues. The Sisters would be humbled by the extent to which their original intention has been translated into a hospital providing one of the highest standards of care anywhere on the planet. They win awards. That’s not why they do it.

I thought it might be useful to describe, from a patient’s perspective, what makes the standard of care here so special and what we, as patients, can do to contribute. Here’s what I experienced at the Mater:

1. Connection

World class nurses look you in the eye. They take the time to find out what you would like to be called. Some people prefer ‘Sir’ of ‘Ma’am’ and some people don’t. Although they are very busy, they take time to find out a little bit about you. You don’t feel like the next patient on the assembly line.

At the Mater they use a whiteboard opposite your bed to record the name of the nurse that will be looking after you on each shift. Hand over happens in front of you with the nurse from the previous shift introducing the nurse from the next shift. Unless you are sleeping.

We can help by responding with our own name when we are introduced and remembering that, while the nurses are hoping to recognise us as people they are also caring for others, some of whom may need them more. If you’re fortunate enough to stay in a hospital with pastoral care, these people are available to listen to what’s troubling you and to provide support.

I’ve put connection first for a reason. It’s the single greatest difference between this hospital and others I’ve stayed in. I can remember the names of everyone that looked after me on the morning and afternoon shift, and many of those that worked night shift even though I met them only briefly. How did they do that?

2. Communication

World class nurses respect your right to know what medications you are taking and what procedures you are experiencing. They are knowledgeable and happy to answer questions. They have the ability to put themselves in our position and to appreciate that while the hospital, its facilities and its procedures are very familiar to them, they may be a source of anxiety to us. They also know the limits of their authority and will refer to your treating doctor.

The nurses at the Mater are very good at explaining things so that they are easy to understand without ever making you feel ignorant. That’s good communication.

We can help by asking about anything that’s bothering us. They are good, but they can’t read minds.

3. Compassion

World class nurses care about their patients. They appreciate that what we’re experiencing might be traumatic or routine and that everyone’s reaction to hospital is different. They don’t tell us how to feel. They don’t diminish what we’re feeling with phrases that start with “At least……” For example, “Well you’ve had a mastectomy but at least you’re cancer free!”

First prize to Brittany, a trainee, whose job it was to book me in. “I have no idea what you’re going through but I’ll do what I can to help.” World class nurses also know not to be visibly distressed around us. Those of us who share your propensity for compassion have a tendency to take care of others, even when we’re unwell. If we think we’re upsetting you we’re likely to mask our symptoms and our emotions.

We can help by being honest, by remembering that we are not there to care for the nurses and by accepting that it might be time for us to be on the receiving end. If we need time alone we need to say so. If we’re experiencing strong emotions we need to find healthy ways to express that, without taking it out on nurses. It’s okay to be angry. It’s not okay to yell at caring people.

4. Commitment to Education

World class nurses never stop learning. They have a high level of expertise and recognise that medicine is dynamic. They will happily abandon old procedure in the face of evidence. They are open to the next best way of doing things.

They are also generous with their knowledge and happy to share it with others. There were two trainee nurses on the ward while I was there and both of them are going to be as exceptional as the people that are training them. There’s an attitude of intellectual generosity towards these trainees. The experienced nurses are enthusiastic about training others.

World class nurses also know that patients can be a source of information and advice. They will ask about our condition and will actively seek feedback about their performance.

We can help by sharing what we know. I made a point of letting both trainee nurses know that if there was anything they wanted to know about my condition or my treatment then I was happy to talk to them. One of them was very interested in my wounds, understanding seromas and learning about triple negative breast cancer. I think that sharing this information with her will help her to provide better nursing to someone else in the future.

5. Community

World class nurses recognise that they are part of a community of care that includes doctors, physiotherapists, dieticians, psychologists, pastoral care staff and other professionals. They know when to refer and when to ask for help.

They also recognise cleaners, ward clerks, catering staff, support staff and volunteers as part of that community. The Sisters of Mercy used to do everything from washing floors to providing meals to lifting patients. The nurses at the Mater clearly appreciate that support staff are providing services that free them up for nursing duties. They speak respectfully to everyone. They are never condescending. It feels like a team of people with equal status.

Wold class nurses never speak badly of other members of their team in front of patients. If you raise a complaint they will deal with it professionally. If you make an inappropriate personal observation they will deflect it tactfully.

We can help by treating all staff with the same level of respect. Everyone is part of this team and nobody should be treated otherwise. The cleaner is not your personal slave (although a patient in an adjoining room seemed to think so).

We can also help by differentiating between legitimate complaint and gossip. These people are professionals. Personal observations about their colleagues are not appropriate.

6. Patient Focus

I’m nervous about this one because modern management is full of ‘focus’ type statements and many of them are hollow. Telstra may profess to a ‘customer focus’ but ask anyone whose been on hold for three quarters of an hour how they’re feeling.

It’s also important to be pragmatic about what ‘patient focus’ means in a hospital setting. Some things here are non-negotiable. You might, for example, argue that you would be much happier if your dog could be with you during your stay but there are sound reasons why this isn’t going to happen.

Perhaps a better way to describe this is flexibility. World class nurses not only understand the ‘what’ of their rules and procedures but also the ‘why’. Within that context they are flexible enough to make allowances in the best interest of patients.

Here’s an example. The evening following the surgery I had about a month ago, at around nine o’clock at night, one of the nurses asked me the question I was to hear again and again at the Mater:

“Is there anything else I can do for you?”

I had been asked to fast from the previous evening even though I didn’t go into surgery until well into the afternoon. When I woke there was the typically meagre post surgical dinner. I was starving. And so I said, “Not unless you can get me something to eat!”

To my surprise and gratitude the nurse replied that she’d be happy to get me a snack and offered me a couple of choices. It was the best vegemite on toast I’ve ever eaten.  It’s these little things that make a big difference.

It’s like the advice I had about brining my own blanket and pillow. It’s the support I had for using eucalyptus spray to make my room smell nice and playing my own weird Indian music (which the beautiful Indian cleaner danced to as she mopped my bathroom).

We can help by recognising that some things are not negotiable.

So that’s my summary of why I think the Mater provides world class nursing. I’d be happy for other people to add their own observations. I’m looking forward to getting back there when I’m well and helping in any way I can with training. Perhaps they would like a presentation on triple negative breast cancer. Perhaps they would like to hear my reflections on the quality of their care.

It will be very short on suggestions for improvement.

Is there anything else they could have done for me?

No.

No there is not.

So thank you to everyone at the Mater. From the welcoming admission staff to, Mateus, the lovely man that refilled my water jug and told me about Brazil. Thanks to Elinita for helping me choose what to eat and to Alice and Michiko, the exceptional breast care nurses. Thanks to Brittany and Yvette and good luck with your studies. Thanks to all of you. Thanks to Jennifer, Ban, Pon, Krys, Emma, Shona, Caroline, Charmayne, Kate and all of the nurses that looked after me during the three day post surgical haze and the night shift. Whether or not I remembered your name, please understand you are a credit to your profession and more wonderful than you could possibly know.

Thanks to my beautiful dancing cleaner. I am so sorry I don’t remember your name. Your contribution to the health of patients is a critical part of the work of this hospital. But you already knew that.

If you’ve been fortunate enough to stay somewhere as wonderful as the Mater, please let them know. If you’ve had a less than happy experience then please check the circumstances before you complain. Is the problem an individual? Or is it the natural consequence of people being asked to work in conditions where they don’t have enough training, equipment, people or effective management? In my experience it is usually not the fault of the individual when it comes to nursing (although there are exceptions). At the moment there is a campaign to establish common patient to nurse ratios across the country. What a great idea.