January the 18th was an awesome day for so many reasons. Twelve months on (and ten months of breast cancer treatment between), I went back and completed my second sprint distance triathlon. The first was done a week after diagnosis and marked the beginnings of me entering the fray of the disease blog genre when I published this post.
Three hundred and sixty five days ago I was filled with the terror of cancer and what was to lay ahead for me. When I made my way into the river for the triathlon start, all of the cancer related anxiety disappeared. I checked out of Cancerland and tuned into the sights and sounds around me in the immediate moment. It was sunset, there were hundreds of heads and arms thrashing about ahead of me so I waited at the back of the swim pack to compose myself. There were large rivergums on the banks and the sun dappled through their branches, there were sulphur crested cockatoos and galahs screeching at each from the treetops. Through my goggles I could just make out the Port of Echuca Wharf in the distance.
I recall the exhilaration of commencing movement through the tea coloured water, of seeing air bubbles emerge from my mouth, stick to my face and be pushed away with the momentum of swimming. Of seeing arms and legs thrashing and churning through the water. The thrill of turning the large meander bend in the river and swimming within metres of paddles steamers. Of being pushed along by the current of the ancient river towards something great. The sensation of fine river sediments squishing between toes as I stood to make my way up the hill to the bike transition. I was alive and the Dread Dragon from the previous week had finally taken a nap and didn’t return for a couple of days. My family and friends were there to encourage and support me. I wondered if I would ever do anything like it ever again. I would have to wait a long time to see.
Two days later, the Dread Dragon returned and breathed fireballs at everything that mattered to me in my life. Struggling to sleep and eat from the fear of the unknown, the long road ahead of cancer treatment ate away at me. Mr Cool took me off to my local hospital, anorexic from my short dalliance with the anti-depressant medication my doctor had tried to help me with a week earlier, nauseated and with heart palpitations from the sheer anxiety and terror of being a newbie to the world of cancer. The waiting for results had began.
After finishing ten months of treatment and giving my radiation burns time to heal I decided to return to this event. In November, once treatment was complete, I took off like a rocket and tried to train as I once had, six times a week. But it was too soon and too much for my chemo and surgically depleted hemoglobin. I was falling into bed at 7:30pm and was unable to wake in the mornings. So I dropped the training back to three sessions a week and that seemed to be enough to help lift my treatment fatigue. I almost gave up on the idea of returning to the same triathlon. For weeks it just seemed unachievable and unrealistic.
But in mid December I decided to have another go at reaching the goal and I started training more frequently again. I wasn’t waiting any longer. My goal was just to go back and finish it again, 700 metres swim, 20 km’s on the bike and a 5 km run and feel comfortable in myself through the process.
I’m glad I didn’t give up on this idea. I’m glad I didn’t wait.
This time, there was much less fear about doing the actual triathlon even though I had a lot less fitness. Having completed it before helped, but there was something about what I have been through in 2013 has made me a bit tougher with respect to challenges. A bit more of a go getter. Some people suggested I should wait. Wait till my body had recovered more. But there is no time to waste. Why should I wait to be ready to exercise? To train? What was I supposed to wait for? What was I fearful of? Getting better? Getting past cancer? Getting on with living?
I’ve put off many things in my life thinking there would be a more appropriate time down the track to start working towards something. I’ve made loads of excuses. I sat and waited. The years rolled on by, and I was still waiting. But I’ve learnt this year that the best time to start is NOW. Not when I think I look more respectable in lycra or am fitter, or have faster times or feel more comfortable while running. But to just jump in and have a go. Just drop the fears and the inhibitions that hold us back. I’m not going to be the Mum who sits on the side of the pool anymore and watches my kids. I am what I am. In all of my puffy, wobbly, bald, post treatment glory.
While waiting in a pre race toilet queue, I got talking to a lady who asked me if I had done the race before. My thin short hair still screams cancer to some people and after she glanced up at my scalp she paused uncomfortably. I told her my story and she proceeded to show me her open heart surgery scar from ten months earlier. Surgeons removed what was thought to be cancer on her aortic valve. And there we were waiting in a pre race toilet queue about to do a sprint distance triathlon. Both of us with an appreciation for our lives and making the most of things. Waiting for the loo. But not waiting for the things that were important to us.
Then, while waiting on the grass for the pre race briefing, I spotted a couple walking past the park. They had waited for the right moment to approach me. I bawled like a baby on recognising high school friends Mel from the Blog I GOT THE GOOD CANCER and ‘Bevan Lemon’ that drove a 700km round trip to surprise me. This gesture mean’t so much to me and I will be forever be grateful to them for doing that. Even more incredible was that Mel had just finished 6 months of chemo and here she was, in the northern part of the state on a 39 degree day cheering me on (and she still has better head coverage than me!) and all while waiting to see if her cancer was in remission or not.
When Mr Cool and I went to leave our children with their grandparents to walk to the start of the swim, my oldest son got upset. This was partly because he saw my reaction to Mel and Bevan’s arrival. But it was also about him remembering the details of this previous year vividly.
He remembers the state his Mum was in last time I did a triathlon and it was when his life changed immeasurably. Shortly after that triathlon his Mum went away to hospital many times, she came home with hard breasts with scars and spent long durations in bed and there was a bag of blood attached to her and she kept going back to hospital all the time to see doctors. She couldn’t hug him like she used to because she was in too much pain and she couldn’t lift her arm anymore. Then her hair all fell out and she was too sick to care for him and his brother, and people kept arriving at his home with meals and cards and flowers. He had waited a long time for “his” Mum to be “his” Mum again. And now we were back in the place where in his mind, it all began.
After reassuring him that everything was okay and that I was very happy and excited, he agreed to cheer for us and I gave him our camera and asked him to take some photos. He played with his brother and they watched and waited for their parents to come into view as the race progressed.
With all of the excitement of surprises from sneaky friends and unsettled kids, Mr Cool and I hurriedly made our way to the start and while walking with a friend the tears started flowing at the feeling of being back here. I had waited a long time to get back here, to this moment.
We were late getting to the start line and it was like a comedy of errors with Mr Cool and I trying to get our wetsuits on as the starter called five minutes and a few hundred people gathered in the water below us.
Still conscious of my post chemo Harold Bishop hairdo, (a character from the Australian TV Soap Neighbours) and the complexities of easing the new hot flush me into tight lycra and a wetsuit that fitted me much better pre treatment, I got a quick kiss from Mr Cool and ran down and jumped into the river at the back of the pack and immediately started the swim.
I’m not a fan of menopausal hot flushes underneath a winter wetsuit and swim cap. Half way along I had to stop to tug on the neck of my wetsuit to let some cool water in. Then I resumed swimming. When I reached the river exit I fell over getting out of the water. I was then unable to get the wetsuit down over my much broader chest and my arms were much more tired from the swim this year. I walked through transition and wasted 5 minutes just trying to work out how I would GET THE DAMN WETSUIT OFF! Riding a bike in a wetsuit? Now there would be a challenge. But I took my time and as the transition area emptied itself I was able to pry the wetsuit off my elbows and make my way out onto the bike course.
On the bike the wind picked up and I was at the very back of the bike field pushing on my own through the wind. Despite there being very hot and windy conditions, I rode the 20km’s with a big wide smile. As I pedalled along I reflected on what had occurred in 2013. My body felt more tired with each lap but I felt comfortable, and I was okay with being last. I was just thankful to be there, and so grateful to all of the people that supported us in 2013.
Then out of nowhere a woman rode up along side me. After some chatting about the heat and the wind and some introductions, it turned out it was her very first triathlon. She was intending to enter the event as a team, and wait till later on to enter as an individual. Down the track when she would have developed more fitness and discovered if she in fact liked triathlon or not. But when she went to sign up she discovered her ‘”friend” had already entered her as an individual to complete the whole thing. So on just 18 days of training she turned up and completed the race. What a legend! And that made two of us who were not waiting.
My incredible partner raced the swim and bike legs in the lead pack and then chose to stop and wait forty eight minutes for me at the start of his run leg to run alongside and finish with me. In his mind, I would not come last, as he would cross the line after me.
Yesterday, I surprised even myself. My second sprint distance triathlon achieved, twenty minutes slower than last year and my proudest achievement yet. But most importantly I was again reminded of what an amazing network of friends and family I have around me and in choosing to do this triathlon, I was able to give my sons the image of me running across the finish line, ecstatic and with their Dad in tow. I’m glad they didn’t have to wait a second longer to experience this.
Now if only I didn’t have to wait for some more hair!
In late September, a dapper knight in shining armour (aka radiotherapy oncologist), galloped through the forest and across the fields and offered this damsel in psychological distress an immediate start to radiotherapy at a hospital in the big smoke. This act of kindness and generosity helped put my mental health back on track. After nearly ten months of active treatment for breast cancer the desire to get to the finish line had intensified and anxiety levels were climbing. News of delays to radiotherapy treatment were painful for all concerned; the patient, friends, family, medical professionals.
So, eleven weeks out from chemo and six weeks from a prophylactic surgery, I finally started radio and I am very pleased to write that my active phase of my breast cancer treatment is finally complete. I recently read an article in the New York Times which depicts what it is like to have breast cancer in a developing nation such as in Uganda. Of particular interest is the graphic a third of the way into the article which reveals the rates of breast cancer and death rates to the disease worldwide. There is also a video that documents Jesse’s story. I think anyone undergoing treatment should click the link above and read this article. This has put the high quality of the treatment I had been fortunate to receive since January into perspective.
Radiotherapy very gratefully commenced and every weekday for five weeks I arrived and was greeted by friendly staff. The small waiting room only ever had a few patients waiting, the wait was never longer than a few minutes. All facets of this radiotherapy process ran as a well oiled machine. I would arrive and change into a dressing gown kept in my own locker and make my way to the treatment room with some trepidation, where I would commence each speed dating session with Varian. I was thankful for this treatment opportunity, the genius physicists and engineers that created such a machine and the doctor geniuses that write and execute treatment plans for patients.
Varian was a tall, grey, imposing linear accelerator. The first time I laid eyes on him I was a little overwhelmed. The prospect of dancing with a linear accelerator is like having twenty five dates with someone you have no interest in dating. The daunting long road of treatment weeks ahead is overwhelming but in retrospect, it does move quickly.
For twenty five treatments I laid bare chested on my back with my arms gripped to handles above my head. The friendly and efficient human technicians would move my torso and hips into position to align my chest tattoos with the laser. Precision is everything in these circles. They would then leave the room so it was just Varian and I alone. Varian would spring to life and sometimes do a sweep over my body, with his arms outstretched he would complete a cone scan and send a fast and accurate visualisation of my bony anatomical structures in 3D to the techs computer screens outside. Then the techs would re enter the room and carefully place a bolus sheet over my chest. It was laid over my tissue expander to absorb the low dose of radiation and lift the high dose to the skin. Tissue expanders are complicating little things.
The humans would again leave the room and then it was just me and Varian, alone in each other’s company. Date, after date, after date. The one sided conversation between us was always the same. Eeeeerrrrrrrrrrrrrrrrr, click, click, click, then the industrial sound of thousands of volts of radiation being projected at my chest. Not at a specific tumour as that was removed long ago, but at an area where cancer cells could localise, such as the skin, the incision site and the chest wall near where my tumour was, as well as the lymph nodes up higher near my clavicle, these beams of radiation being of a preventative nature.
Varian was always in command while I tried to breathe normally and laid perfectly still for 10 minutes. Sometimes my mind ran free and I imagined my body floating in the ocean with a dolphin swimming and circling around me because Varian’s exterior was grey and shiny this conjured up the image of a sea creature. Then at other times, it felt like I was laying on production line in an automative factory. There was something about the way his long robotic scanning parts moved into position, I felt like a part being welded. If it was early in the morning, Varian had been sleeping and the technicians would wake him up by turning him on and he would lift his gigantic head from the floor. This was the only human quality he displayed.
Varian’s gigantic cyclops head would always rotate clockwise around me, stopping at nine different angles and injecting fifteen different doses of radiation into my chest and clavicle area. But his monotonous dialogue was always the same. While I laid still and as quiet as a mouse, Varian strutted and spun and spoke…
“Errrrrrrrrrrrrrrrr, pause click click, Neeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Errrrrrrrrrrrrrrr, click, click, pause, Neeeeeeeeeeeeeeeeeeeeeeeeeeeee, pause,
Sometimes each of the “Neeeeeeeeeeeeeeeeeeeeeeeee” radiation firing sounds would go for five seconds and sometimes ten. Not that I was counting or anything. The monotony of the sounds made it difficult to count them, so by the end of the fourth week I gave up in my quest to count, and instead focused on recognising the nine different angles he stared at me from.
Varian’s enormous cyclops eye would blink at me with each beam projection. His columnar lead lashes moved with each pre programmed position to create a shape that the radiation is projected through. Interestingly, the final shape Varian would make, was a fairly accurate silhouette of the right side of my left tissue expander. Once I saw that shape, I knew that Varian had had his way with me. Then I would get up, get dressed and leave feeling ever so slightly violated.
At the very end of my five weeks of treatment, my skin began to redden and break down. The line of skin in the fold of my armpit began to split and peel, my nipple lost its top players of skin, but the rest of my breast (or tissue expander, I’m not sure how to to refer to them anymore) remained intact.
Before this breakdown of skin occurred, I had been religiously moisturising multiple times a day with a product called Moo Goo Light Udder Cream (see www.moogoo.com.au) A generous friend who also just finished her treatment for breast cancer mailed me some and this had been great for keeping the skin moisturised and taking the heat away. It definitely helped my skin. Different products work for different people. Some friends swear by using a leaf straight from an aloe Vera plant, though some practitioners caution against this because of the risk of infection. I also used cold compresses of flannels from the freezer, and have been bathing in saline solution (boiling water and adding 1 teaspoon to 1 litre of cooled water).
At the moment, the small areas of broken skin or open burns I have developed will require regular dressings each day. The radiation dose will continue to climb for another ten days beyond treatment and then my body should start to heal quite quickly thereafter. It is itchy and painful at times. When the burns begin to speak to me, it’s time for more Solugel. Showering also provides some relief and assists in the removal of any dressings that become stuck. The aim is to preserve the skin. I can’t help but think what it would all feel like if I hadn’t had the majority of my nerves severed from the mastectomy and axilla lymph clearance. There is a plus after all to mastectomy induced nerve damage!
Fortunately, I didn’t experience any fatigue that patients sometimes report with radiotherapy. I did however develop a sore throat in the early weeks which made swallowing some foods difficult. But despite that, there were no other effects.
My children really enjoyed their time with me in the big smoke. Despite having radiotherapy everyday for five weeks I was able to turn it into something positive for them. Life continued as normal and we were able to have some fun family experiences visiting landmarks and tourist attractions in the city. Last week, they created some pictures on our iPad to document some of the things they’ve been doing with me.
Somehow and rather hilariously, they imported a picture of a linear accelerator from my iPhoto library into a Play School Art Application and I found these pictures on the iPad. I had to laugh that Big Ted was chosen to have radiotherapy treatment.
This morning, my eldest said “Mum I wish you never got breast cancer, but I’m so excited that you’ve finished your treatment!”
On Friday morning, Mr Cool drove me 2 hours to the big smoke specialist cancer hospital, and despite arriving on time, I waited in the waiting room for another 2 hours for a 12 minute breast clinic consult. I was quite annoyed, especially since a friend of mine who had a later appointment was seen before me and I sat for another hour. Of course, when I went in my breast surgeon apologised for the delay and
I gave her a piece of my mind I didn’t mind, cause she is mesmerisingly impressive worth waiting to see. So all was forgiven.
In the small consult room we gathered, myself, the breast surgeon, the plastic surgeon and the breast care nurse.
After dutyfully stripping off, the plastic surgeon took a close up picture of my breasts with his iPhone doing my best breast pose. Naked from the waist up and with my hands on hips I nearly said cheese as he snapped away. Luckily I’ve been practising in the bathroom mirror for months.
I love the feeling of being photographed topless by a 60 something, hairy faced, balding plastic surgeon and this photo then sitting in his iPhoto collection along side thousands of other breast pics. I’m hoping he doesn’t leave his phone on a table in some random cafe. These pics I assume, will be safely guarded and used as a reference in surgery.
In four weeks, I will be having my preventative prophylactic mastectomy. Tests show no cancer in my right breast. But the risk of recurrence or new cancer is quite high and right from the diagnosis I made a decision to have the second breast off. If my tiny breast can have as much cancer as it did, then I don’t want any breast tissue on my body. Especially since the cancer is strongly Estrogen positive. This decision has not wavered since the January diagnosis.
At the time of this second mastectomy, they will put in a silicone implant and make a dermal flap to hold it in place and stop it from bulging out the top of my pectoral muscle which is pulled off the ribcage to make room for implants to sit behind. In the same operation, they will remove the tissue expander from my left breast that has been there for 6 months, and replace it with a silicone implant. I might ask if I can keep the tissue expander as a souveneir. Could be used as a paper weight or something. After a hostile start, we have become friends, the little Asian sized expander that was never expanded.
Working together, the breast surgeon will perform the nipple and skin sparing mastectomy and a possible sentinel node biopsy, they will turn the nipple inside out and scrape and freeze some cells and hurry them off to pathology and wait for the result in ten minutes. I’m not sure what they will do while waiting. A quick round of Candy Crush perhaps? If the result is negative for cancer I get to keep the nipple. The plastic surgeon will then take over and build the breast with my new implant and give me a bit of hollywood shoozhing. I will be in hospital for 3-5 days and will come home with Exudrains again. You can see a picture of what they looked like last time I had them here. And again a nurse will visit me daily to check the dressings and drains. For a month I will sleep sitting upright in bed as I can’t lay on my sides or stomach. And like last time, I wont be able to run for about 5-6 weeks, perhaps longer given I’m so low from chemo and I will have already commenced radiotherapy 2-4 weeks after this surgery.
They are very happy with the work they did on the left Shittytittie cancerous breast back in January and February. It has healed well and looks nice and perky and radiotherapy should take care of any cancerous cells that may have been left lingering.
With the exception of nerve damage to the breast and arm from the mastectomy and full axilla clearance back in February, I love my new breast, and am quite happy with the 3 o’clock nipple. (Refer to Diagram B below) But in this meeting the plastic surgeon and breast surgeon had a little conversation between themselves while I sat bare chested and listened…
BS : What are we going to do about that nipple?
PS : What do you mean? How far to the left side and how high it is?
BS : Yeah. We definitely need to fix that!
Me : Oh thats okay I have always had nipples that point sideways.
BS : No we really should do something about it.
PS : If she is happy we can just leave it and make the other one the same when we do the mastectomy and insert the new implant with a dermal flap.
BS : Or you could just move it slightly to the centre with another incision.
My Plastic surgeon nodded while closely studying my left breast.
PS: I’m more concerned with this swollen scar tissue at the surgical incision line at the side of the breast. It is very tight. We’ll need to free it up a bit. We could drag it round to make the side of the underarm more streamlined, and that would change the position of the nipple.
Me: What about the top of the breast? It’s very tight when I raise my arm.
PS: Oh don’t worry about that we will loosen that up in the next operation.
The plastic surgeon left the room.
- BS = Breast Surgeon with the amazing shoes and largest diamond I have ever seen on her ring finger.
- PS = Sincere Plastic Surgeon with the hairy face.
- Me = Me with the wonky arsed nipples.
So there is just this small dilemma of the nipple placement. For 37 years I thought my nipples were you beaut perfect. Turns out, the surgeons think they out of the ordinary. Extraordinary even. I have never had front on “beamers” (For those not in the know, Beamers refer to hard nipples, visable through one’s shirt) My lights have always shone out to the sides. Always. But with a lumpectomy and mastectomy and with a tissue expander inserted, my nipple is considerably higher than it once was and it points to the side – like to 3 o’clock if you get my drift. (Refer again to diagram B). The yet to be renovated breast has a nipple that currently points to 8 o’clock so there is considerable work to happen to achieve symmetry. Symmetry is everything in the plastic surgery world. I am a geographical person also, so another description of nipple orientation might include compass points. My left nipple sits east north east and my right nipple currently points south west and the perfectionist breast surgeon would like to see them even and centred. I’m not sure I even care.
For your amusement, below are some annotated diagrams outlining the dilemma. I’m a visual person and I like pictures, but I’m not putting photos of my breasts on this website. Just letting you know now. So below is as good as it gets.
Diagram A: Pre cancer nearly 40 something boobs that have breastfeed two children. These were my “Rocks in Socks”. But they were good rocks, in good socks and they were mine. Before cancer moved into the building.
Diagram B: Post cancer lumpectomy, mastectomy and tissue expander insertion. Here the left breast is perky and larger than the original even though it was never filled or expanded, with a 3 o’clock pointing nipple. Right breast (my right) still the original. I have always liked 3 o’clock, it’s a great time of day.
Diagram C: August planned prophylactic (preventative) right breast mastectomy with immediate reconstruction with silicone implant, making breasts the same with a 3 and and 9 o’clock nipples. Cue circus music. Hideous, someone cover her up! (I thought they would look great!)
Diagram D: August prophylactic (preventative) right mastectomy with immediate reconstruction with silicone implant, making breasts the same with extra incisions to move both nipples more to the centre of breast so that they look like beamer headlights (point forward). (Yawn, can’t be bothered, I thought I looked good already. Mr Cool will find other reasons to leave me than my outward pointing nips.)
Now I am left feeling a little confused by the options for my wonky nipples. Is it really a problem? I can’t have people sniggering at my high and sideways pointing nipples when I go topless on St Kilda Beach after all of this is said and done. Maybe I need a tummy tuck too? My stomach points to the sides as well. Can they do that at the same time? I’m guessing I’ve got two weeks to decide whether I want them touching and moving my nipples when I next meet them and sign consent forms for the surgery. These first world problems get more ridiculous as we ‘advance’ as a society. Advance being a highly debatable word.
For this fortnight, that concludes the great nipple position, freak show, circus saga.
On a more serious note, I will be back to the big smoke in two weeks to see a psychologist about undertaking my prophylactic mastectomy. Apparently anyone who has one must see a psychologist first. Not to approve or deny the mastectomy, but just to talk though the issues around the taking of a breast that doesn’t yet have cancer in it. Do I see it as an amputation of a body part? Will there be any adverse psychological effects of this decision? I had a breast removed already, and I am very ready to let the other one go as well once chemo is complete.
My pathway through treatment has been complicated. After I was initially not likely to require radiotherapy, post mastectomy pathology revealed I probably should have it (Multifocal, grade three, one node, tumour close to chest wall, want to live as long as possible, have young kids etc) which has put a bit of a spanner in the works for how we move forward.
I am presently unable to have an MRI on my breast because I currently have a tissue expander with a metal magnetic port in my chest. Being in a MRI machine would be a bit like sitcking a ball of metal in the microwave. I have had mammograms and ultrasounds of the second breast. They have come back clear. Yet the surgeon has twice raised the prospect of doing a Sentinel Node Biopsy (SNB) to be sure to check the lymph nodes. She said I would be very unlucky to have cancer in the lymph nodes of my right arm given I am on chemo at the moment , but it does happen even when no cancer is detectable in a mammogram or ultrasound. Once the mastectomy occurs, diagnostically they cannot do an SNB because that involves injecting the breast with both radioactive contrast and blue dye and imaging it prior to surgery and then removing the nodes involved to check for cancer (see my previous post “Blue Dye” for a description of this procedure), but there is a risk of lymphodema occurring in the right arm, and I’ve already had all of the nodes removed from the left arm. So having two arms at risk of lymphodema is not a great prospect. The alternative is to take a chance and do nothing with the nodes. So another decision to make as well.
Of course, I am wondering if the surgeon’s picture will be used in some hideous nipple placement photographic presentation at some plastic surgeon’s circus convention. Roll up, roll up to see the lady with the mismatched 3 o’clock and the 8 o’clock pointing nipples! To be fair though, someone who was wearing designer 6 inch fluorescent pink stilettos (kicking myself I didn’t get a picture) has created this uncertainty about my nipples in my mind and it wasn’t my hairy plastic surgeon. To move or not to move. It’s not like I have any breast sensation left post mastectomy anyway.
Just call these growing waves of unsettled thoughts I have to make decisions about my “Nipple ripples”.
Cue circus music now.
I’ve been waiting for months to revisit my breast surgeon, since our string of regular surgical dates and reviews was completed and she sent me on my way to heal. I grieved a little for the finality of the first part of treatment farewelling so many characters which had been such a feature of my life in the early days of diagnosis; the breast care nurses, the plastic surgeon, and their side kicks. The familiar surrounds of the hospital. As I returned to continue the treatment plan at my local hospital.
Today is breast review day back in the big smoke. She will inspect her handy work, the scalpel cuts that are four months along, the Asian sized tissue expander as well as the armpit with no lymph nodes. There is the small matter of radiotherapy to discuss before plans for the second mastectomy and sentinel node biopsy can proceed. All of this dialogue might occur in a fifteen minute meeting which I am happy to make a four hour round trip for.
I have not forgotten the scent of her perfume. Or the excitement and anticipation I felt when I saw her clothes and shoes each time we met. Time has moved through two seasons since our beginning. Today I’m expecting some wintery attire. Stilettos would be unlikely. Perhaps long leather boots?
I am a little excited for this date. Despite feeling unwell, I have put some makeup on my bloated steroid infused face and chosen one of my favorite headscarves. But it is a very different woman that will meet the surgeon today. I wonder if she will remember who I was? Maybe she could remind me.
I have spent much of my adult life budgeting for bills, mortgage payments and haven’t spent a lot of money on fashion or girly things. Most of our money goes on our children, domestic holidays, restaurants or triathlon related getup. I am quite the stinge when it comes to spending money on myself. This may have arisen from watching my Mum manage her finances as the “Supreme Queen Saver”. It may also have stemmed from never having a large disposable income at my peril. So I chose to make do with what I can, recycle things, wear second hand clothes, fill my house with secondhand furnishings which I affectionately think of as my “shamtiques”. But there is something about a cancer diagnosis that makes you stop and say, “You know what? Who cares? Time to live a little and clear those cobwebs off that purse!”
In the immediate days post diagnosis, we went shopping and I made some spontaneous and unnecessary purchases. Cancer immediately placed me in a frame of mind of reckless financial abandon. I was running around in a bit of denial about who might be left to pay the visa bill if I died. Perhaps I was trying to medicate with something new and snazzy even though I have never in the past fallen into the trap of the shopping high. I think it was more about the fact that this terrible thing had happened to me so I deserved to drop the usual rules of deprivation and sacrifice for something new. No point depriving myself anymore as I might only have 5 years left. Lol. Irrational thoughts relating to mortality come frequently post diagnosis.
There are some things you save money on when diagnosed with cancer. There is no point purchasing expensive shampoos and conditioners anymore. No point going to the hairdressers. Why start now? I’ve only ever been 7 times in 38 years anyway. No point buying expensive razors when I can’t shave both my armpits anymore. The other arm and legs might as well miss out from now on too! I can’t lift my useless arm high enough and with damaged nerves and the numb sensation, I could very easily hack a great hole in it and I wouldn’t feel it. And with no armpit lymph nodes anymore, a minor cut or scrape puts me at a greater risk for infection in the limb and lymphodema. So there is not a lot of point buying certain things.
But stools, stools are another thing. Every cancer patient needs a pair of funky (read ugly), eclectic (read uncoordinated) kitchen stools made from the finest rainforest timber from developing nations. I have been looking at stools for almost a year but had never found anything I liked enough to shell out hard earned cash for. All it took was one cancer diagnosis, one frivolous, self indulgent, self absorbed, pity purchase. From the shop to the boot of my car faster than you can say the words Visa debt!
Every newly diagnosed cancer patient needs to load up on headscarves. Go out for milk, come home with a paisley/floral/vintage headscarf. Why not all three? Wallah! Every newly diagnosed cancer patient needs to buy some bright new clothes. Go out to get some children’s birthday party staples, come home with a bag of clothes for self indulgent Mummy. I don’t want to be looking drab when chemo hits. So out I go to buy the most colourful clothing I have in years. All of a sudden I feel like Carson Kressley: fashion savant, personal stylist extraordinaire. Thanks again cancer!
The most humourous element in all of this newfound love of retail therapy, is the deep need to blurt out the details of my breast cancer diagnosis to any unsuspecting shop girl. You know, those women working in retail? Well they have been getting more than they bargained for when they benignly ask me what occasion the dress has been purchased for or how my day has been, or how am I? How am I? Well let me give you the honest truth!
A week after diagnosis, I was shopping for a dress to wear to a friends wedding. It just happened that my awesome friends had come from Melbourne to support me in my first sprint distance triathlon. In it, I announced to a runner that I had cancer as I passed her 4kms into the run leg, but that is another story. Anyway, my friends and I found ourselves in the oldest Myer Store in Australia. It’s as though it hasn’t been renovated since the fifties as it still has some very old single width escalators up the middle of it which are lined with mirrors. Shamefully there has never been a time when I have not turned or glanced sideways to look at my reflection on this escalator. A bad habit I started in my teenage years because at home we had a mirror inside the front door and my brothers and I used to endlessly stare at ourselves and squeeze our zits, practise facial expressions and check ourselves whenever we went out or came home.
Anyhoo, this escalator takes you to the women’s clothing section on the second floor. Not the section for young women, but the section with the more mature women’s clothing. I have been shopping on this second level for 15 years, letting go of my place as a fashionable youth a long time ago. The three of us shopped like we were back in our high school days. We crazily chose 6 or so dresses and the other women in the change rooms could hear us talking about not worrying about the price as it was a special occasion and I had cancer. As they left the change rooms there were some empathetic glances. One woman even stopped to tell us a dress I was trying on in front of my friends looked fabulous on me. The retail assistant was very supportive as well. Lets all rally around the outdoor education lady who is buying a dress for the first time since her wedding day. Oh and she has cancer too! Very, very special!
One of my Besties, JRF took pictures of me in each of said dresses on his iPhone under the guise of me being able to see myself in them better. (As if a mirror wasn’t enough!) Though I am guessing he did this more as evidence that this old tomboy did actually try on dresses in public. When we made our way to the counter to pay for the dress that got a 2/3 majority vote, my other awesome friend MK explained the chosen dress was the best choice because you couldn’t see my undie lines. I never knew undie lines were fashion faux pas, but there you go. I am learning so much since cancer.
At the register, we were met by a couple of new retail assistants. The new shopgirl said “Wow, you’ve chosen a beautiful dress for yourself. What is the occasion for?” A simple question except my response was … “My friend is getting married on the weekend and I don’t often get dressed up for things and I, I, I have cancer.” The retail lady could not wrap the dress and process my visa card fast enough. We laughed all the way down the rickety escalator and out of the department store.
Last Friday, I found myself in the shops sans children which happens rarely. I had spent a hour in the grocery store. It happened to be the slowest night in service history. I spent ten minutes lining up at the deli to get some ham for children’s birthday sandwiches. All the while thinking about how processed meat is a carcinogen and asking myself why I had agreed to purchase it. As luck would have it, I then picked a checkout with the slowest checkout girl in history. She could not log into the register. She couldn’t get the automatic grocery conveyor belt thingo to work, and it took her five minutes to undo my bags. I remember feeling like I was on the clock. Hurry up, I’ve got lots to do. I have children’s birthdays to prepare for and I am very busy with breast cancer.
After this mind numbingly slow transaction took place, I decided to wheel my heavily laden grocery trolley with my totally thawed products over to the clothing section of the mall to purchase a couple of outfits. I’ll be dammed if chemo is going to make me look drab! The shop assistant noticed I was in some manic buying state and made the mistake of asking me how I was. Poor lady. I said “Oh I don’t have my kids with me. I usually shop for clothes once or twice a year, but I have cancer so it’s a special occasion.” WTF? Who says that? I even bought a full priced shirt which is unheard of for me. I am always seen flicking through the discount racks. But hey, I deserve it don’t I? Surely with cancer, two surgeries, a brand new boob and useless arm all in the last 7 weeks!
Ever the salesperson she seized on the opportunity to sell me a scarf, pointing out the new season scarves in the store. Her manager would have been proud. I told her I am all scarved up at the moment. She told me about a place in town where you can loan wigs. I’m not quite ready to think about wigs yet. They remind me of furry animals. Take it off, hang it over the back of a chair, and in the morning it has moved itself to another part of the house. Scary critters wigs are! She wished me well on my cancer journey, called me darl a few times, did one of those pity head tilts and we parted ways.
So with some new outfits and some scarves, and a new handbag that Mr Cool bought me for our wedding anniversary (my third handbag in 38 years) I am going to look stupendously smart and cancer-y in the coming months. Might even drape myself across my new kitchen stools.
Everything comes down to attitude. It’s the only thing anyone has any control over in their life. The rest is unpredictable. Health, relationships, circumstances. A positive outlook or attitude benefits everyone. So this is my positive take on today in point form.
Brushing your hair, pulling up your undies or taking a t-shirt off are incredibly difficult after armpit and breast surgery. I am learning to graciously accept the help of others in situations like this. So if you see me walking naked in the street (except for my t-shirt) please stop and offer assistance. Just gently and very slowly lift it over my head. Don’t be concerned about the drain coming from my chest and the bag of blood. Many thanks in advance.
The landscape driving through the granite country south of our awesome city and the apple growing region always puts on a spectacular display, with sunlight and clouds stretching over rolling hills which are either yellow or green depending on the season. I love this landscape.
All the time in cars we have spent in recent weeks without our children has been good for our relationship and for strengthening our communication. It is great to connect with my partner after many weeks of us just treading water. Little people do their darnedest to make it all about them (and rightfully so).
Melbourne has some beautiful parks and streetscapes and it is nice to be visiting her frequently after living regionally for fifteen years.
It is nice to see members of my medical team again. I like them, so much so, that I would arrange a dinner party if I wasn’t just another one of their 3000 patients they see every day. I could potentially get depressed, more from the finish of treatment than from having had cancer, as they won’t be a regular feature in my life anymore. So I’ve decided to throw dinner parties for random strangers just to fill this void.
Once you go through an experience of multiple surgical treatments for something like breast cancer, (and in a similar way the exposure and dignity loss accumulated from the experience of childbirth), pulling the curtain shut for countless adults at breast inspection times seems really unnecessary. It’s not like they haven’t seen my breasts before. Don’t worry, you won’t see me topless on St Kilda beach anytime soon (unless the implants look amazing).
My husband is really hot. The surgeon took a double take at his gorgeous, cyclist shaved, brown legs today and made comment on them. I pretended I didn’t notice. Unfortunately he did. As if I haven’t seen him admiring his legs enough!
I am really good at talking to the surgeon and taking pictures of her shoes at the same time. See…
After the initial cancer diagnosis and the crazy shock of it, results are just more of the same. Good and bad. They really are just results. A bit more news. I’m a bit numb to it. Even when there is good in it. This indifference is great as it stops me obsessing and stressing unnecessarily.
Why is the hospital cafe food full of the same stuff that is sold at airports? Every time we walk into this hospital I’m looking for a check in gate and wondering where I’ve put my boarding pass.
I might be a candidate to participate in an international trial called “The Supremo Trial” to see if there are any benefits of post mastectomy radiotherapy on breast cancer patients with aggressive cancer. I love it when they name these things after pizza.
I’m keeping the nipple so far. There was no cancer behind it. So that is one less body part to remove. Yay! Although I shouldn’t be too premature with my celebrations, as with the trauma from surgery my nipple may be at risk of tissue necrosis where the tissue dies from lack of oxygen. I have always wanted to visit Antarctica. So I’m viewing this as a kind of ode to frostbite and Shackleton. But so far so good. Breathe nipple, breathe!
If it does turn black, surgeons will remove it and it could be replaced with a nipple tattoo. (Cue music for Embarrassing Bodies, Episode 54) I’ve never liked the idea of tattoos. But if I have to have one, a nipple sounds way cooler than a tribal tattoo, a dolphin or misspelling my husbands name. Imagine getting a nipple tattoo on your bicep? Now that would be super!
A second mastectomy of breast number two, and another sentinel node biopsy of the other armpit is now a given. This will happen post chemo later in the year. Oh joy! The things a mother has to do to get her kids a tour around a fire-station! Hopefully the results of that won’t mean more chemo in 2014. Imagine the jokes I’ll have to create if I have to go through all of this a second time!
The removed breast revealed more patches of pre cancer changes (DCIS), not including the original invasive ductal carcinoma tumour (IDC) and the ductal carinoma in situ (DCIS) that was removed in the first lumpectomy operation. All of these acronyms make it sound like an episode of NCIS. It is hard for me to fathom all of this cancer activity in the space of my tiny 148 grams of breast tissue. On the bright side, at least with a double mastectomy, I will at some point have a set of matching breasts. It will be nice to have some 18 year old looking, perky body parts after all these years.
I think I’m falling in love with a girl called Endone.
‘Chemo’ and ‘dreamo’ rhyme. My chemotherapy might go for 6 months and this is so much better than 10 months! Ain’t no chemo gonna ruin my Christmas lunch. It will be of the ‘Third-generation’ variety which is a bit more cutting edge they tell me. I need some time to recover from these two February surgeries. It will start in roughly three weeks time. This means it won’t start till after the kids and my birthdays. Winner winner chicken dinner! So baldness might not be a feature till April or May now. ‘Bout time I had a new hairstyle anyway. We worked out in 37 years I have only been to a hairdresser 7 times.
The familial/genetics clinic is booked to help search for any potential mutant DNA and troubled genes. This excites me as I love family tree research!
In two operations there have now been a total of 21 nodes removed. Only 1 of these was cancerous. Which is great news but there are no guarantees. Breast cancer is a sneaky bastard and plucks off unsuspecting women at random, even with small tumours and no nodal involvement. Indiscriminate and unpredictable in nature. But in spite of that, 1 node out of 21 is really the BEST news we could have received today!
The Exudrain lady is unfortunately returning home to the country with me today. So a few more days of carting her around. Never mind, it is quite a nice floral bag she sits in. The glances at the shops have been interesting.
There were no tears today. Could have worn mascara after all!
People have offered so much practical and emotional support it’s awesome! We love ‘youse’ all (said in Australian bogan voice)!
There was definitely a silver lining on that cloud I photographed this morning. I just had to look closely enough to see it.
Why did I chose to start my cancer treatment in a hospital 200 kilometres from my city that has a perfectly good hospital that treats cancer?
My GP with the nervous, wry smile when announcing my diagnosis said… “You would be crazy to do that! Our hospital has great oncology and radiotherapy departments. I know the head of the team. He is a great guy. The surgeons are good. But you would be mad to go to Melbourne! Our city has better survival rates, and if you were my sister I would say you’d be mad to do that!”
There was criticism from others too.
Let me see, my breasts, my body, my mind, my life! There is a lot more to lose when you look at it from my perspective.
We had the roofs of our houses fixed last year and I stupidly accepted the first and only quote. So I have learnt the hard way. Why would I get one quote relating to something so important? This is a very serious matter and I didn’t want to look back in years time and ask the question would the outcome have been any different had I gone to a large specialist cancer hospital in a the big smoke? So I did some research.
In my future, the outcome of this decision may be no different. But I am happy with the decision I have made. I will have all of the surgeries in Melbourne, the treatment plan will be decided on by a large team of professionals and referred back to my local hospital where I will undergo chemotherapy and radiotherapy five minutes drive from home.
But the decision about treatment is a deeply personal and individual one.
In Australia, people have a choice to be covered by their own private health insurance scheme or the publicly funded government system called Medicare. Philosophically and practically, my husband and I have always been opposed to private health. Partly because we have never been able to afford it, living on single incomes as each of us studied or raised our family or paid our HECs debts, or met the expenses of our generation X living. We also, like many, got tangled in the large net of home ownership dreams that has been sold to many Australians. I guess it’s about priorities. But a user pays health system that gives greater healthcare access to people who can afford it just does not sit well with me.
I often wonder what would be my predicament if I lived in the United States and had the same living arrangements, but with the added burden of medical bills showing up in our letter box. Could I claim a redback spider living in the letterbox bit the hand of the postman and so prevented him for delivering such bills? Obviously not. Redbacks do not live in the United States! But seriously, to have to open a letter that says $1500 for the scan, $900 for this, and $450 for the specialist appointment that lasted 28 minutes would be devastating. Or in days gone by, I might have had to mortgage my house to have access to available medicines for breast cancer treatment (as was the case when Herceptin was first introduced in Australia). Heartbreaking stories. I just don’t know how my mental health would fare if this was my reality. It is true, treatment does not come cheap in either country. And if we had chosen private health insurance there would be the actual ongoing costs as well as the gap costs which also add up.
I cannot even begin to fathom what this whole experience might be like living in a developing nation where cancer rates are following similar patterns as here, albeit without the technology, supplies and the standard of medical care we take for granted.
So I am very, very, very fortunate.
Why should access to healthcare ever be about socio-economics? I have never been able to wrap my head around that. Feel free to call me an idealist. Friends have said… “But what happens to you or the kids in this public system if one of you needs a hip or knee replacement? You will have to wait for years in the public system and what if you have cancer?”
Cancer? Cancer is not a problem!
Yesterday, my results from the surgery where completed by the pathology team. They were printed and collated. I’m hoping the breast tissue and all of the nodes cooperated. The results were emailed to all relevant team members. Sometime in their busy day of rushing to patient clinics and ward rounds with takeaway coffee cups they would have taken a look.
Some of the members of my illustrious team work most of their week in the private hospitals nearby and they run through the parks to work at my public hospital. I’m not sure about it, but I think my breast surgeon runs in her stilettos across Fitzroy Gardens. One day I might go and sit there quietly under a tree on a park bench along the main path between the private and public hospital she goes between. I would need to be incognito, but it would help me confirm if she does in fact do this. That might be a bit obsessive and stalkerish? Hmmm, only if people find out about it, I guess.
So, this team, my team, met to review my case yesterday. In the room there were up to fifty health professionals who listened to the presentation and reviewed all the data. They might have debated and they hopefully reached a consensus on the best course of treatment for me. Patient is Lisa. She is 37, almost 38 years old, has two very young gorgeous children and an awesome husband, has a healthy BMI, is physically active, likes running and triathlons and chocolate, bloods results are good, comes to appointments well researched and asks lots of questions, doesn’t let much slip by her. Actually, probably none of this is mentioned, more like… staging scans clear so far, full pathology results are… cancer type, tumour size, grade, margins, hormone status, HER2 status, nodal involvement. The surgeons provide a brief, the plastics team representative says something, the nurse coordinator says something then the oncologists discuss my treatment plan. Discussion. Alternatives? Consensus reached? Great! Next patient…
So when I worried about getting a second opinion in the early days and stressed over my decision to go to the capital city because I really, really wanted a second opinion, I never dreamed I would essentially be given between five and fifty of them. One can never collect too many opinions!
I wanted to be there in this meeting. After all, it is me they are talking about. But the hospital has a policy of not allowing patients to be present. Apparently they trialled patient involvement in these review meetings recently and it didn’t fare so well. The outcome of the trial was that patients don’t like to see professionals debating treatment options. They don’t like to see time wasted on discussion about rounds of golf or a new restaurant that just opened in the CBD. Or flirting between colleagues. Patients don’t like to see uncertainty. They don’t want to know that oncological treatment options could go several ways based on research studies and differing opinions. They don’t want to see personalities and institutional politics or pecking orders at work. What if the bully oncologist wins the argument, not out of merit, but an ability to stomp on the views of others? What if they are tired in this meeting? It is someones life we are talking about isn’t it? My life.
This doesn’t worry me. Like all things, medicine is culturally constructed. It is the best tool we have in dealing with these matters. But I don’t prescribe to the notion that there is the best and most undisputed way. Our understanding of the world is changing all the time. And thank God it does. Cancer treatments evolve and change all the time. And it is through this dialogue between practitioners and their research debate that we know more and more. I am accepting of this whole process.
I would have really appreciated an invite but alas I didn’t receive one. So as would have it, my ears burned a little yesterday.
I imagined the room would have been full of crazy ties, business shirts, perfume and beards, spectacles, after shave and Audi key-rings. Clipboards, pens, iPhones, iPads and perhaps some egos. But most importantly the room would have been filled with (at the very least), a collective 500 years of medical knowledge and experience in both public and private healthcare and there can be no price put on that.
I have enjoyed the nurse at home visits. This week I met five awesome people who assisted me in the home with their bag of hospital latex gloves and Tegaderm dressings to see how I am faring and to measure my drain output. All of them work part time visiting patients in local homes and spend the bulk of their week in the emergency department, or paediatrics or other hospital departments. The home visits help them get out for a while and keep them fresh. One of the Exudrain twins has now been removed and the second will get to go on a car ride back to Melbourne tomorrow for the much anticipated results. Once it is out I will be free!
After a week of struggling with breakthrough pain at night time, I got on top of it yesterday. My awesome GP who isn’t so good at telling his patients about the cancer within them, is very good at writing a script to restock my supply of Endone. It would also appear he is great at checking my post diagnosis triathlon result online. So we are all cool again. It was never going to be an easy task for him, being the deliverer of such bad news.
Life is good.