Waiting

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.

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Photo from echucatriclub.com

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.

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What incredible friends and family I have! Photo Credit to Bevan Lemon.

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.

Seven months after chemo my regrowth nicely resembles Harold Bishop! Way to go me!

Seven months after chemo my regrowth nicely resembles Harold Bishop! Way to go me!

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.

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Not waiting. But doing it.

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!

Mr Cool gave up an age group win and stopped and waited for me so we could finish together, with Mr two chasing us up the finish chute.

Mr Cool waited 48 minutes to let me finish before him with our Mr Two chasing us up the finish chute.


Big Smiles on the Winds

My recovery is going well.  Just three weeks post rads and the burns have completely healed with only a slight suntanned tinge to the area and some residual itchiness. The tissue expander is tender and there is some hyper sensitivity if I am brushed past.  This may always exist and I’m hoping I don’t develop capsular contracture of the tissue expander in future which sometimes happens from radiated implants. But so far it’s looking good.  I am scheduled to have an exchange surgery which will swap the expanders for silicone breast implants sometime in the next 18 months.

I am thrilled to be getting back to walking, riding my bike and running.  Well, if you can call jogging slower than what most people can walk, at least it is something.  It’s going to take some time to get any sort of fitness back. When I run it is hard.  It is uncomfortable. I want to stop, but once I start I won’t let myself walk.

It has been a lot harder that when I started 21 months ago on a serious fitness and health kick, (which led me to discovering cancer). I must have low haemoglobin from the blood loss from surgeries and chemotherapy. The last mastectomy in August resulted in quite a lot of blood loss, but not enough to have a transfusion. I could really do with some Lance Armstrong type blood doping now! What’s that eloquent quote? “All good things come to those who wait go out an f@*ken earn it!” So I’ll just have to take my time and keep chipping away till I see some improvements in my cardio fitness.

All of the expectations of returning to what I was twelve months ago aside, getting out again has helped immensely with energy levels and getting on with things. Big thanks to Catherine, Megsie and Mrs Kenny for being there on the occasions where I took my first steps on the exercise road as a “survivor of cancer” which is a very strange thing to refer to myself as.  I’ve been treated for cancer and now I am not being treated for cancer.  But I am here, and I am out moving, and breathing, and smelling the air, and taking it all in. There is a new appreciation for everything.

The only thing that is bothering me at the moment and believe me, there is a lot of things that could bother me when I reflect on the last 11 months, is that four months post chemo I still don’t have a thick layer of hair on my head and I seem to have developed some male patterned baldness.  You know when they say couples grow to look alike?  Well I think that is what is happening.  Mr Cool and I are morphing into the same man!  My hair is one inch long and it is terribly thin and you can see all of my scalp in daylight.  I’m hoping this will rectify itself in the coming months or I will forever be wearing scarves, wigs or opting to have a shaved head for the rest of my days.

Male patterned baldness… the new black!

Male patterned baldness on a woman… the new black!

I’m not sure how I feel about this given I had long straight hair for 38 years.  I never contemplated how long it would take to regrow hair. I had a lot of fun taking the hair off for the Shittytittie Chemo Cut Challenge. Some women never have proper hair again due to the chemo drugs, it is rare but it does happen and can be psychologically difficult to come to terms with. If I turn out to be one of them, if at least I am alive and that is what counts.

Last week a student I taught back in 2006 wrote me a letter after hearing of my circumstances this year. The news made him reminisce about his experiences in a Winter Alpine Environment subject I taught at university.  How amazing is it to receive a hand written letter in the mail from someone?  I can’t even remember the last time I received one.

He wrote…

“You’ll be glad to hear that my relationship with the mysterious and moody mountains still continues strongly and I have just completed two terms teaching at an alpine school.  Many of your alpine lessons have been passed onto my students too.  I have been teaching people how to paragluide and have taking tandem joy flights for a few years now.  Many of your weather lessons have helped build my meteorological knowledge up too and I fondly remember you saying “you should observe the weather in the mountains as often as you think about sex!”  Lets just say I read the weather quite well now!”

Ha ha! I can’t recall saying that, as I used to observe the weather in the mountains more than I thought about sex. But that’s just me!

He then went on writing his beautiful letter and extended an offer for me and my family to go for a fly around the mountains with him if the weather is good.  That offer might just be too good to refuse!

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Morning Flight. A student takes off on a morning flight.
Photo: Kieran Campbell Image from http://www.alpineparagliding.com

He was and is one of those free spirit and awesomely natured folk, with a depth to him and an understanding of how to really live. It’s no surprise to me that he now teaches outdoor education intermittently in the winter months so that he can spend the other half of the year taking paragliding joy flights in the mountains.  If ever there was an experience of living on the edge it must be soaring high above the Australian Alps!

The letter and the offer, just awesome!  And I promise to write back to you.  With a real pen and paper, and an envelope and a stamp and everything!

Big smiles to you too Wally, big smiles on the winds,

Marshy.


Varian Had His Way With Me

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.

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The dapper knight in shining armour

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,
Errrrrrrrrrrrrrrrr”.

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.

Varian's columnar eyelashes. Image taken from www.varian.com

Varian’s columnar eyelashes. Image taken from http://www.varian.com

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.

Visiting the Aquarium

Visiting the Aquarium

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Staying in the city.

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Visiting the beach.

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Eating out at cafes.

What happens in radiotherapy. Picture by Master Five.

Accompanying Mummy to Radiotherapy.

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!”

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Visiting the Aquarium.