Silicone, Scarves and Singlets

When the breast care nurse brought me some samples of silicone prosthetic breast in hospital I juggled them. We laughed, and I told her I really just wanted to put something on my Facebook status about juggling breasts.

They are heavier than I thought they would be. Of course, if I had only had one breast removed then having something that weighed about the same would be important. I’m told women in this situation can have problems with neck pain, shoulder pain and even balance if they don’t wear a prosthetic breast. It’s less of an issue if you’re naturally small breasted but mine were large. My pathology tells me they were close to a kilo each.

Of course, having had both removed means I now have the option. Prosthetic breasts or no prosthetic breasts? It’s not a question I ever imagined having to ask myself. I’m still undecided.

I can’t really wear anything just yet. I’m still healing. I have seromas, a build up of fluid under the skin, on both sides so best to stick with singlets for now. I have the contact details of a woman that will come to my home and fit me with artificial breasts and bras to go with them. I also have the address of a shop in the nearest major city. If I want to wear something swimming there are special ‘light weight’ prosthetic breasts, but the breast care nurse tells me that the standard silicone ones are fine. You would think so. They make bake ware out of silicone.

The Breast Cancer Network Australia sent me a bra and some ‘soft form’ inserts to wear while I’m recovering. I asked for something in a C cup rather than my original F. They look strange. They look stranger to me than my dolphin chest. They remind me of embarrassing performances by footballers at end of year functions where dressing up as women is something of a tradition. They look really obviously fake. I don’t know if bigger ones would look any better. Decisions, decisions.

I still get a shock when I look in the mirror. I want to make jokes about someone stealing my breasts while I slept but I suspect I’m the only one that will find that even remotely amusing. I don’t hate how I look. It’s just a shock. When you’ve been large breasted all of your adult life, suddenly being flat chested takes some getting used to. The bonus is not having to wear a bra. I’m loving it. I’m inclined to not wear one ever again. That would mean just dressing for my new body shape.

My friend, Jo, always looks fabulous. When she first had her double mastectomy she didn’t bother with prosthetic breasts but in recent times she’s decided that there are some outfits that just look better with them. I’m the kind of person that doesn’t wear fake eyelashes. I stopped colouring my hair when I turned 50. I also think it would be odd for me to spend most of my time just not bothering and then to wear breasts occasionally. Will it be a thing that people notice and comment on? “Is Meg wearing fake boobs tonight?” Worse, will it be a thing that people notice and think is odd, but don’t comment on?

I decided to spend this week going through my wardrobe. Yes, I’ve only been home from hospital for a week and I knew this was going to be upsetting, but my thinking was that this was a task best done early and quickly. A bit like ripping off a bandaid. What I didn’t want was months of standing in front of my wardrobe, choosing something to wear and then putting it on to find it looked terrible. I pulled whole sections out and dumped it all on the bed. It took me a couple of days and only a few tears to get through it all.

I’m about 168cm tall (5’6″) and a size 12 or 14. At 52, I don’t have a lot of low cut or revealing clothing but the first thing to go was anything that clearly needed breasts. That included tailored shirts with darts (which look like arrows pointing to where my breast used to be!) and anything cleavage dependant. Surprisingly, some cross over tops still work but I need something under them.

Queue the joy of singlets. I already had a large collection of singlets, mostly from Target and Big W, that I wear under sheer shirts and jumpers. It turns out that a lot of things I can’t wear on their own work just fine with a singlet underneath. Same goes for scarves. There’s now a lot of great Youtube videos on tying scarves in all kinds of ways. Here’s one of my favourites:

The one about half way through called ‘the magic trick’ is a personal favourite. The great thing about a scarf is that they give you interest and detail at the neck line and help to disguise the lack of a bust line. Before I consigned anything to the chuck pile I tried it with a scarf. I still managed to almost halve my wardrobe.

It did help that my daughter was getting first pick of anything I didn’t want. There were a few things that I knew she’d wanted since I’d bought them. She was so excited to get the floral cardigan that looks wonderful with her curves but odd with my lack of them.

It was also an opportunity to seriously reconsider some of those time travellers from the 80’s and the 90’s. I cried over the red velvet Mr K evening gown. Ever notice how really beautiful evening wear never goes out of fashion. I bought this dress for a ball many years ago, wore it to a work event in China where I met Pelé and to a Police function in Wollongong with my new boyfriend that I met on the internet. We’d only been dating a few months and it was a big call to walk into that room with me. He’s fearless. It’s part of why I married him. When he discovered me crying over that dress he put his arms around me and held me and told me that he loved me.

There were also some pleasant surprises. Some things work better without breasts. Anything with a cowl neck, unstructured jackets and shirts, and coats that fall mid thigh all look great. Anything with a large collar or pockets and detail across the chest, and caftan style tops with big patterns are also back in the wardrobe. Detail is my new best friend.

Out are tops with waterfall hems that used to balance out my large breasts but now make me look bottom heavy and triangular. Things in plain, solid colours are now relegated to under-wear. They’ll be fine under shirts and jackets but they show every little ridge and bump in my chest. Same goes for gypsy skirts that hang to my mid calf and have a bit of gathering at the waist. Nope. On the bright side I think I’m going to be able to wear shorter, straight skirts that show off my legs. Thank you (again) yoga!

One of my favourite cardigans almost went out until my husband suggested changing the way I wear it. By wrapping it across my body and pinning it at the side it looked great. This sent me back to the chuck out pile to see if anything else could be worn differently. Nope.

Most of my knitwear made the cut and all of the pants and jeans are just fine. I no longer own a single yoga top. The built in shelf bras now sit almost as low as my waist. Lucky I have all those singlets.

It worked through all of my clothes over the course of two days and I now have a wardrobe full of things that I know will look great. I’ve got some new combinations that are going to work really well and a bit of a wish list for the next time I go shopping.

And boy do I have a really great reason to go shopping!

Once I’d sorted everything I went back through my chuck out pile and asked myself if there was anything that I loved so much I would want to wear artificial breasts to keep it. There wasn’t. Not even the red velvet dress. Clothes are just clothes.

This is my new body. I love how brilliantly it’s stood up to all of the awful things I’ve put it through. I’m not embarrassed by it or ashamed of it. I think it looks just fine without breasts and until that changes I’ll be passing on the silicone and sticking with the scarves and singlets.

I’m also open to the possibility that, like Jo, I might decide somewhere down the track to wear prostheses. And it would give me another reason to go shopping.

 

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Some Wounds Go Deeper

I’ve been looking at the mastectomy wounds on my chest today, wishing they would heal. I’ve been thinking that I want to get back to my life, back to being healthy, back to normal.

But what is normal?

Things are never going to be the way they were before I was told I had cancer.

I was a cop for twenty years so I saw more than my fair share of death. Some of it was sudden. Some of it was violent. I thought I had a pretty good handle on the idea that our lives are finite and we are all going to die one day.

Until it was my life we were talking about. Suddenly my own mortality loomed up in front of me. I hit my head on it. I fell down in front of it.

When my Dad died of bladder cancer at 58 people commented on how young he was. I sometimes thought about celebrating my 58th birthday and raising a glass to my Dad, sad that he was no longer with us.

I’m fifty two.

Suddenly fifty eight feels like a long way away.

By a peculiar coincidence, if I make it to 58 my chances of living longer and remaining cancer free will be good. That’s the thing about triple negative breast cancer. It’s more likely to kill me in the next three years than other types of breast cancer but if I can make it to five years my odds improve dramatically.

Still.

I’m never going back to that blissfully ignorant state where I just assume I’m going to be watching my grandchildren finish high school. These are my as yet unborn grandchildren. I may never meet them.

The plans that my husband and I were making for our retirement have taken a whole new direction. It seems those property investment decisions were not nearly as important as we thought they were. Our focus is much closer to now. One of the great gifts of cancer is that the notion of mindfulness, of being in the present, sinks into your bones.

I notice details. The light on a drop of water suspended from a branch in the garden. The creases at the corners of my husband’s eyes. The smell of my daughter’s hair. I soak it all up. I breathe it all in.

I am greedy with my time. I find myself furious at the telemarketer that wants to sell me a life coaching course and irritated with the web site that takes too long to load. I have no patience for queues. Okay, I’ve actually never had any patience for queues but lately they infuriate me. Time is all we have. Time is all any of us have. Every day we make a thousand tiny decisions about how much of it goes here and how much of it goes there. How we spend out time says everything about who we are. Words mean nothing. Actions mean everything.

Do I really want to spend two hours arguing with my sister on Facebook?

Everyone is getting used to the way I look without breasts. I decided not to have reconstruction and to opt for what would heal the fastest. It’s been two weeks since my mastectomy and I’m already doing yoga. Next Monday I’ll be back at class. My chest is tight and uncomfortable, as my surgeon said it would be. I’ll be healed soon.

Well, sort of.

Some wounds can’t be seen on the outside. That loss of security, that blissful ignorance about my own mortality, that sense that life is just going to stretch on and on and on forever; that’s never coming back.

Which is not entirely a bad thing.

Cancer has taught me what I value (and what I don’t). I have a whole new appreciation for my beautiful husband, my wondrous daughter and all of my amazing friends. I really understand the importance of love, and kindness, and just taking time to enjoy life. Really.

Cancer has humbled me. I hold my opinions lightly, having had so many of my old ones shattered by cancer. I am less certain and less opinionated. This is a good thing. I have less time for the dull and wilfully ignorant and a greater appreciation of the compassionate and the charitable.

And my Mum. How can I even begin to explain how I feel about my mother’s bravery and strength and humour, not just because she’s been with me through all of this but because she’s already been beaten black and blue by cancer. She watched it kill my Dad. Slowly. I know she has days that she’s frightened for me, and fears me facing that slow death of gradual loss. And still she smiles and hugs me and brings me plants for the garden. She cries in front of other people. She smiles and laughs when she sees me. She understands better than anyone that cancer has changed me.

I am a better person.

I hope to live long enough to prove that to all of the people that have done so much for me, meant so much to me and brought such joy to me when everything seemed dark and bleak.

I hope to remember all of the hard lessons. I hope the grief and the pain will fade with the scars.

I hope.

I know what matters now. My goal is to live a life consistent with my values. To be authentic.

Or just to live.

That would be good.

 

 

Two Weeks After Mastectomy

It’s two weeks today since I had both of my breasts surgically removed.

It’s around a year and a month since I was initially diagnosed with triple negative breast cancer. Since then I’ve had neo-adjuvant chemotherapy (which killed three of my four tumours), surgery to remove the remaining tumour and then radiotherapy to my left breast and the middle of my chest. At the one year mark my mammogram showed some suspicious looking cells trailing away from the marker clip I had inserted into the tumour site. A second breast conserving surgery in July of this year revealed active, invasive cancer so on the 8th of August 2014 I had both of my 14F breasts removed.

I’m at home now and still healing.

Following surgery I had four drains leading from my chest, under my skin and exiting my body about a hand’s width above my waist. The drains help to prevent a build up of fluid (serum) under the skin at the wound site. Mine stayed in until the volume dropped below 30mls. For two of the drains this only took a few days but the other two were in for the better part of a week. The final one came out last Sunday.

It’s a fairly unpleasant feeling having a long tube of plastic extracted from under the skin but it’s not as painful as you would think. The nurses removing the drains asked me to take three deep breaths and pulled the drain out on the third exhalation. Two weeks since surgery and what’s interesting is that the places where they came out of my body are probably the most uncomfortable part of this procedure. I suppose it’s because any sideways movement aggravates them.

The final drain also developed a small blister under the tube where it exited my body. I was a bit squeamish about the drains and didn’t have a good look at them. When I spoke to the nurses the assumption was that I was describing nerve pain, which is common following mastectomy. It turns out the pain was a mundane blister which could have been avoided if only I’d thought to look. Worth keeping in mind if you’re having a similar operation.

My chest has three wounds. There are two long ones where each of my breasts was removed and a smaller one, high up on my left……oh wait, nearly typed ‘breast’! There’s a smaller on high up on the left side of my chest from the surgery in July. It’s surprising how much smaller this is now that there’s no breast tissue under it.

The right side is healing well. The left side is fragile thanks to the damage caused by radiation. It will take longer to heal but it’s looking okay. In the last week I’ve developed some nasty purple bruising (normal) and some more hard lumpy areas where my skin is starting to stick to my chest (also normal). My surgeon tells me that this adhesion to the chest wall is a good thing because it will prevent the collection of fluid under the skin. I don’t know if my skin will stay stuck to my chest wall. I’ll put that on my running list of things to ask my surgeon.

I have seromas (fluid collection) on each side but it’s not excessive and not making me nauseas. The breast care nurse from Gosford told me that nausea is a problem with seromas which explains why the rather large one I had following breast conserving surgery was spoiling my appetite. One of the breast care nurses at the Mater drained 30mls from the right side of my chest and just under 30mls from the left side of my chest on Monday. The breast care nurse at Gosford told me she wouldn’t usually drain such a small amount because of the risk of infection but I wanted them drained before I came home.

Draining a seroma is at least as awful as it sounds. It involves very large syringes attached to hollow needles. The first time my surgeon did it I couldn’t even look. On Monday I had no trouble watching and helping by holding the side of the seroma and pushing gently towards the location of the needle. It’s interesting what you can get used to when you don’t have a choice. But yuck!

I was taught how to gently massage each side of my body to help the seromas drain. At the two week mark there’s still some fluid on either side but it’s not excessive and, most importantly, it’s not stretching or distorting the skin. While I was still in hospital I figured out that I could use the hand held shower to massage my skin and this worked really well to reduce the build up of fluid. Now that I’m home I’m moving my body under the fixed shower which doesn’t seem to be as effective, but it’s still beneficial. I wonder how my beautiful husband would feel about an urgent bathroom renovation.

I’m covered in what’s known as ‘steri strips’ which are like a reinforced tape. When my wounds are a bit better healed I’ll replace these with micropore tape which will help to flatten out the scars. My chest feels like I’ve got a bad dose of sunburn. Depending on how I move it feels like its being stretched and pulled.  I’m focusing on keeping my shoulders back and standing tall. I used to call this throwing my chest out. Hilarious. There’s also a joke in there somewhere about taking a weight off my shoulders.

I’m doing my exercises each day and I managed about fifteen minutes of gentle yoga yesterday. Bliss.

I’m not on any heavy duty painkillers. I’m taking panadol (paracetamol) at regular intervals and at this stage I’m on six a day. I could have up to eight. My doctor explained that the idea is to keep the pain relief topped up and not to wait until I’m in pain to take it. Pain will put my body under stress and stress will have an impact on my recovery. This makes sense.

I’ve also been given enough Gabapentin to wean off it. I was having three a day in hospital and was delighted to find that my peripheral neuropathy symptoms vanished. No more sore hands waking me at two in the morning. No more ‘metal mouth’ where everything is tainted with an aluminium taste. Food tasted so good I thought I might leave hospital heavier than I went in, which, having left close to two kilos of breast tissue in the operating theatre, would have been something. I’m having one a night and sadly the neuropathy symptoms seem to be returning. I’ll need to research the long term effects of this drug and decide whether or not to ask my GP to prescribe it.

Not surprisingly, my balance feels a bit off. Remove two kilos from one side of your body and that will happen. I’m walking for at least half an hour every day and that’s helping me to feel more comfortable, or what my massage therapist would call back in my own legs. I love that phrase.

I was sent home with a binder which is a thick piece of elastic that fastens around my chest using velcro. It’s like a heavy duty girdle but worn around the chest and the edges dig in at either side. What’s the inverted version of a muffin top? Whatever it is, you get one at the base of a binder. Not attractive. I have been told variously that wearing it will either help to prevent seromas or that it won’t make any difference. Some women report that they loved wearing their binder and the sense of security it gave them. I think I’ve found a better solution.

I’ve got a couple of compression tops. If you’re not familiar with these then think of the skin tight black outfits worn by elite athletes. They exert all over pressure on your body and they are supposed to help with everything from performance to recovery. Here’s an article about them:

http://www.ausport.gov.au/sportscoachmag/sports_sciences/compression_garments_do_they_influence_athletic_performance_and_recovery

Compression garments are also used in the treatment and prevention on lymphedema, so it seemed sensible to me to try one out as part of my recovery. I’m so glad I did. They are very comfortable to sleep in and give support to my chest without feeling like an old fashioned corset. Mine have long sleeves but if you’re somewhere warm you can get short sleeved versions. Sporting goods stores will charge you a compressed arm and a leg for them but they are available cheaply from Aldi from time to time, or you could search online. Also, with a pair of matching black tights, I get to play Catwoman over breakfast.

Check with your medical team if you want to wear a compression top instead of a binder. It might not be suitable for you.

The down side of compression garments is that you probably need to be able to get your hands over your head to get them on and off. They are designed to be tight so if your movement is restricted that could be a problem. It would be possible to have a kind person help you to pull one on, but it would not be easy.

Mood wise I’ve been a bit up and down. I’m missing all the care and attention I had in hospital. I miss impressing the staff with my recovery and my sunny disposition. I miss my breakfast tray. I’m not as sad as I was before surgery and I think my ability to just make room for all of that sadness is part of the reason I’ve coped so well. I suspect the reason I feel so flat is that I’m home, but I still need to take it easy. I want to be out and digging in the garden and moving loads of mulch. I want my health and my strength back. I am impatient.

I’m having all the same weird pings and tingles through my chest that I had after breast conserving surgery. It’s good to know this is normal. I also have the occasional random pain in my left shoulder, as if someone is sticking me with a needle. What’s that about?

My pathology came back ‘cancer free’. When I told my husband he said, “That’s wonderful! Will they be putting them back on?” How would I have managed all of this without his sense of humour? He’s been doing a lot of hugging this week. I’ve had a few tears but mostly I’m like a tiger in a cage. Don’t worry. I’m not doing any heavy lifting.

I’m counting down five years from the 8th of August 2014. My chances of staying cancer free improve every day that I don’t have cancer. One day at a time. I am hopeful that the removal of both breasts and my node negative status mean that I have finally dodged this barrage of bullets, or at least emerged with survivable wounds. I’m ready to be well. I’m ready to get back to life and love and laughter. I know my mind will keep whispering ‘but what if….’ and I will recognise that very familiar thought that occurs regularly to all cancer survivors, and I will ask myself “Is this thought useful?” and I will let it go.

This is my bonus round. Every day from here on in is a gift, a day that might not have been. I know who I am and I know what I really, deeply care about. Thank you cancer.

Let’s do this.

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.

 

 

A Year in my Garden

The cancer came.

I sat in the garden and cried into the asparagus, wondering if I would live to eat the tender spears.

Through chemotherapy the garden offered up ginger for nausea and watercress for soup. I had no energy. I resorted to weed killer, leaving the garden bald and barren.

When the fever came I rode it, hoping it wouldn’t become life threatening neutropenia. There was too much rain and the garden became waterlogged. I sweated. The fever broke. Three of my four tumours were gone.

Before surgery I hurt my elbow when, with a sudden rush of adrenaline fuelled energy, I pruned the apple trees and set aside the wood for smoking. After surgery the rain kept coming all through summer and the garden became wild and overgrown. I looked at the vegetable garden and remembered that chick weed is good for healing.

I started daily radiation therapy for six weeds. There was no time for the garden. No energy for the garden. I fought fatigue to dig the miracle of untended potatoes and to harvest joyful mandarins. The brush turkeys dug holes in the lawn. The wallaby ate the day lilies.

Slowly I recovered. I felt a little stronger as autumn arrived and the claret ash turned the same shade as my irradiated skin. I made soup from Jerusalem artichokes and fed scraps to the worm farm. I shared tamarillos grown from seed beside the compost bin. I made jam. I harvested pumpkins and put them on the corrugated roof to sweeten. The pumpkins rotted out from the base and I fed them to the worms.

My one year scans showed something unexpected. Probably fat necrosis said my surgeon, or dead cancer. Maybe something in-situ. Nothing to worry about. Take another slice like the magic pudding and all will be well.

I wondered if this scar would be as good as the last one. I tried to do some mulching but I was sill too tired. I went to the nursery and wasted money on plants that died. I surrendered. I organised for someone else to come and help. I went for surgery. This would be the end. All would be well.

The pathology said the cancer was back. The doctor said mastectomy. I sat in the garden and cried. The garden cried with me. Both of us, poisoned, flooded, burned, pruned and neglected. Both of us desperate to live.

I woke up without my breasts in a room without plants. I opened the shutters to look at the sky and the trees. A crow came every day to sit on a TV antennae outside my window, broadcasting a message I didn’t understand. The pathology came back. I was cancer free.

After eight days of care I go home tomorrow. There is a storm outside. The wettest day all year. The wind will rip through my garden. When it stops I will go outside and start rebuilding. I will put my feet in the soil. The magnolia blossoms will be destroyed. The daffodils will be ruined.

It doesn’t matter.

I can enjoy them next year.

Life After Breasts

WARNING: This blog contains a photo of my naked, breast-less chest. If post-surgical photos make you squeamish you might want to skip this one.

It’s been eight days since my bilateral mastectomy.

I’m still in hospital waiting for the last of the four drains to come out. Drains are plastic bottles with little green concertinaed plugs on them that provide pressure. They’re connected via tubes that run under the skin to the wound site. The drain serum as it collects and prevent the formation of seromas.

Yes, it is very strange having tubes coming out of my body.

When the volume of fluid drops to 30mls within a 24 hour period the drains come out. Three down, one to go. At this stage it looks like it will be out tomorrow.

There’s a seroma on the side where both drains have been removed. It feels like water under the skin. When I woke up this morning it seemed fairly swollen but I’ve been doing what I can to help it drain naturally, through my lymph system, during the day. The breast care nurse has taught me how to gently massage from the seroma down to my groin. I’ve also found running warm water from the shower over it seems to help, particularly if I hold the arm on that side over my head.

I’m trying to walk at least half an hour every day, even if it’s just around and around the ward. Walking means I’ve been able to confidently refuse the twice-daily heparin injections they’ve been giving me to prevent blood clots. My doctor asked me to do this because if she changes the prescription and I get a blood clot she’ll be liable. She agrees I don’t need them. Heparin is injected into the skin. I’ve had most of them in my tummy which is now covered in nasty blue and yellow tinged spots. An anti-clotting drug will, of course, cause bruising.

Walking is also a great way to become more familiar with my new body. Losing about two kilos from my chest has an impact on my posture, my balance and how I move. It’s an odd feeling. It reminds me of being on a boat, where you never quite feel stable.

I’m concentrating on keeping my head up and my shoulders back. It seems a lot of people that have had mastectomies curl forwards. I think that would only emphasise the fact that I don’t have breasts.

Some of the staff have made comments about me wearing out the carpet or being a bit driven. Give me a break. My doctor encouraged this and I’m trying to do the best thing for my health. On the bright side, the breast care nurse tells me that my walking has inspired some of the other patients to get out of bed and start moving. Gone are the days when bed rest was considered to be the best treatment for anything. Bodies need to move to be healthy.

I’ve taken photographs of my surgical wounds. A number of people who have already had mastectomies recommended this. They look brutal. They don’t feel it. I’m surprised at how little pain has been involved and how quickly I’ve started to feel well. I’ve got physiotherapy exercises to ensure I maintain good movement and flexibility as I heal. Kylie, my surgeon, tells me that things will start to feel a lot tighter over the next few weeks as the scars heal. Then they will gradually loosen off again as I exercise and massage the scars.

Part of the healing process involves the skin adhering to my chest. There’s a few lumps and bumps in the finished result, particularly on the side where I’ve had radiation, but I think it’s going to look okay.

I can still feel my nipples. I don’t have any, but it feels as if I do. My surgeon says this is common. Curiously, I can feel them on my existing chest and not sitting out in front of it where they would have been if I still had breasts. I like being able to feel them. My body doesn’t feel as if anything is missing. When I put my hand on my chest it’s as if my nipples are behind a leather jacket.

I think it would make a huge difference for women having mastectomies if there was a way to preserve our nipples and the erectile tissue that comes with them. When it comes to being intimate, I know my husband will miss my breasts. They were a source of pleasure for him. But I will miss my nipples.

I spent some time last night on Facebook joking with a large-breasted friend about all of the things I’ll be able to do now I don’t have any. She had a great time laughing and pretending to be jealous. Here’s just a few of the things I’m looking forward to:

* Shoe string staps – haven’t worn these since I was a kid. I never could get used to the ‘visible bra’ fashion.

* No summer under boob sweat.

* Jogging. When I was at the police academy I had to wear a sports bra over a thing that felt like a wet suit to prevent tissue damage when I was running. I haven’t run since. Contrary to what TV script writers would have you believe, police very rarely chase anyone on foot.

* Not having my breasts up under my chin in ‘downward dog’. Yoga fans will get this.

* Not sitting in the audience of a concert or a play and finding my bra has become so uncomfortable that it’s stealing my attention.

* No more neck and shoulder pain – although curiously I’ve had shoulder pain since surgery. The physiotherapist says this is common with mastectomy patients, particularly previously large breasted ones, as the muscles readjust.

* No worries about what they’re going to look like as I age. No flopper’s droop. No pencil tests. Flat and free. At 52 my breasts were not going to get any better looking!

* Kayaking without having them under my arms.

* Going topless on any beach (although I probably won’t)

* Rowing without hitting them with paddles.

* Trampolining. (Well why not?)

I’m surprised by how comfortable I’m feeling about my surgery, and the absence of my breasts. Comfortable enough to joke about it, to take photos and to sit around naked from the waist up while I talk to the breast care nurse and my husband.

My body has been a warrior through all of this. My blood was amazing all through chemotherapy and I avoided any nausea. I healed quickly after both breast conserving surgeries. When I needed six weeks of radiation I had only mild redness and no blistering. What a wonderful body. How forgiving of everything I’ve put it through. How resilient. I am so grateful.

So I don’t have any embarrassment about these photos. One shows my chest just a week after surgery. You can see the two mastectomy wounds along with the original wound from my breast conserving surgery a month ago. Kylie could have incorporated this into a single wound but I preferred to go with symmetry and the least risk of tissue death. Post radiation tissue is fragile. Best not to mess with it.

This is my dolphin chest. It’s still a bit uneven and you can see the seroma on my left side, but I’m going to be fine. Kylie has left a bit more skin on the irradiated side to make sure I heal well, and to allow for the possibility of tissue dying back. One week after surgery and it’s clear that’s not going to be a problem. She tells me I can come back later for a ‘tidy up’ if I choose. We shall see.

I’m posting this photo for other women facing the same surgery. It will be okay. It will look something like this. It will be terrifying when you first get the news and you have no other choice and then it will get better. And even better.

As you can see from the other photo I’m not going to have any trouble working this look. I’m thinking ‘svelte’ thanks to my husband. And ‘athletic’.

I’m so glad I decided not to have reconstruction. I would not be so close to well, and my body really deserves to be as well as possible as soon as possible. The war is over. These are my battle scars.

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Not All Cancer is Pink

I’m in an oncology ward.

You would think this would have occurred to me some time before five days but it really did take that long for me to figure out that everyone here is being treated for cancer.

About half the rooms have signs on the door reminding everyone that enters to clean their hands. A few have gloves and aprons that need to be worn by everyone, including the nursing staff.

There are trolleys in the hallway stocked with purple disposal containers and purple gloves and disposable coveralls. I remember these from chemotherapy. There is equipment for dealing with toxic spills and a room full of mobility aids.

The barrier nursing is not to protect us from getting cancer. It’s to protect people with compromised immune systems from catching anything from us. A head cold can kill you when you’re being treated with chemotherapy.

The ward seems to be about half full of women and half full of men. Some are old. Most are not.

One of the other women has the same surgeon as me. She cheerfully told me she was in the waiting room the day I found out I needed a mastectomy and rang my daughter using the receptionist’s phone to ask her to come home for the night. I can tell by the presence of Zonta pillows that there are at least two other women being treated for breast cancer.

While I’ve been here I’ve had to ask my husband to buy me some zip fronted jackets. I’m wearing track suits and don’t have enough tops to go with my bottoms. I usually pull something on over my head. That’s not a good idea at the moment.

Graham did a great job on his first ever solo expedition in search of women’s clothing. I was showing one of the nurses and commented that I really loved the fushia coloured one, more so because it wasn’t ‘breast cancer pink’. I’m a bit over it. When I let my hair stay it’s natural grey I added lots of pink to my wardrobe. It looks great with grey hair. Since my diagnosis it looks like I’m making some kind of statement when I wear it. I’m not. My friends know I have cancer. They don’t need a reminder and I’d prefer not to be the obvious cancer patient in the room.

The nurse commented that last year they decorated the ward and the cafeteria and the garden with so much pink it hurt the eyes. One of the patients said, “It’s great, but I have bowel cancer. Are you going to have a brown ribbon day?”

A few weeks ago I got a message from a man in the USA whose wife is one of the rare survivors of mesothelioma. He asked me to blog about his wife’s cancer. Here’s part of his email to me:

“I am reaching out to you today to ask for your help by participating in a campaign we are running to spread awareness about mesothelioma – a cancer caused only by asbestos exposure. Mesothelioma is an entirely preventable cancer and hopefully with your help, we can potentially save lives! Heather and I have been so lucky to meet some incredible bloggers who have helped us in our journey to spread awareness and I was wondering if you would be willing to do the same!”

I was touched to be asked. I don’t suppose this blog would reach more than about a hundred people. It’s mostly been a way for me to get things off my chest (just realised how funny THAT phrase has become!) and to share how I’m feeling with friends and family. I don’t imaging that warning people about asbestos related cancer through this forum will have very much of an impact. But I promised to do it anyway.

Cameron and Heather were hoping I’d be able to join their July campaign to spread the word. Suddenly my world got turned upside down and I was scheduled for a mastectomy. It’s now the 14th of August.

Breast cancer is the second leading cause of death for women in Australia. It deserves to be well funded, well resourced and well researched. I have great admiration for all of the pink charities and the wonderful people that run and support them.

But not all cancer is pink.

Cameron didn’t tell me how Heather contracted mesothelioma. She must have come into contact with asbestos fibres some time during her life. It could have been that she lived in a fibro house that hadn’t been well maintained, or maybe she played somewhere that building products had been dumped. I might be that she was unlucky enough to have picked it up from working in a building where the asbestos ceiling was slowly degrading or perhaps she was a victim of secondary contamination, handling clothing or equipment that had been in contact with asbestos. Frighteningly, she might have come into contact with worn or damaged asbestos while she was at school.

It would be very difficult to pin point Heather’s cause. Her contact might have happened thirty to sixty years prior to her diagnosis. It might have been misdiagnosed as a chest infection. It might have been ignored because it’s usually men that get this disease; they are four times more likely than women to be diagnosed.

Unless of course, Heather is a veteran. USA veterans are at the greatest risk of Mesothelioma. Cameron didn’t tell me why. It makes me sad to think of all those men and women sent off to war that are now being diagnosed with this usually deadly cancer. Most people diagnosed have only 10 months to live.

There are worse things than breast cancer.

Breast cancer is a good cancer to have. Okay, that’s not right. No cancer is ‘good to have’ but some have better survival rates than others. In Australia, breast cancers generally have an 86% survival rate and triple negative has a 75% survival rate. A lot of this is due to the outstanding work done by pink charities and the generosity of the people that support them. Some of this work has been of benefit to people with other kinds of cancer.

I recently got an email from one of the breast cancer research groups asking me if I’d like to participate in some research into the impact of early menopause on women with breast cancer. The one before that was about maintaining marital intimacy.

Really?

Not that both these topics aren’t important to me. They are, but I’m pretty sure when people donated, hosted morning tea, rode a bike, ran a marathon or walked ‘For A Cure’ this wasn’t what they had in mind.

To me there are three priorities when it comes to cancer; treating it, preventing it and curing it. That’s where the money should go.

These days we can use social media to network and support each other. Do we really need to fund a ‘support network’ or could we promote one through Facebook and redirect that money to research. Same goes for sending me a kit to help me on ‘My Journey’. How about an ebook instead?

I can understand why the McGrath family wanted to start a charity to support breast care nurses but it’s possible that this charity is simply allowing governments to avoid the cost of providing positions. I became aware recently that the local, part time breast care nurse at our local hospital, which services a population of 320,000, is likely to be ‘reassigned’ when the McGrath nurse is funded at the end of the year. So a person with nine years experience and a great love of her work will step aside and the government funding for her position will be used to fund something else. Who knows what happens in the future when/if the McGrath funding dries up.

Breast care nurses save money.They spend a lot of time on the phone to people, reassuring them that what they are going through is normal, answering questions and providing advice about other avenues for support. If they weren’t there, people would either suffer in silence and potentially undermine their recovery, or they would go and see a doctor. Both alternatives are expensive to the health system. These positions should be a priority for government funding. Not dependent upon a charity.

It’s daffodil day this week. I’m a long time supporter of the Cancer Council. Their slogan is ‘All Cancers, All The Time’. They also provide information, advocacy and networking. They also fund research.

If you were an Australian with mesothelioma this would probably be your first port of call. They would have information about the disease and would be able to put you in touch with any local support groups. They’d give you free phone counselling and advice about everything from managing your condition to handling your finances. If Cameron and Heather were here instead of in the USA they wouldn’t need to spend their very precious time asking bloggers to spread the word.

This daffodil day I’ll be wearing a daffodil for my Dad.

He died of bladder cancer at 58.

Maybe I should launch yellow ribbon day.

PS: If you need more information about mesothelioma here’s a couple of good websites:
http://www.mesothelioma.com/ A general site from the USA that includes some frightening information about Australia.
http://www.mesothelioma.com/veterans The USA veterans’ site.
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Mesothelioma An Australian site from the Victorian Government