As a family, we are absolutely blessed with a huge team of supportive people from all walks of our lives and this network grows and grows; friends, family, work colleagues, running club, school, kinder, long term friends and new acquaintances. I am particularly grateful for this “team” of ours, especially at this time of year as Christmas approaches when it’s easy to reflect on and appreciate the great relationships we have.
Cancer points out in both a brutal and beautiful fashion who you can count as on your team. People help in any way they can, in different capacities with both practical and emotional support to offer. Sometimes those that you would expect to be of support aren’t able to for many reasons, and that is okay. But I am unlikely to ever forget the love and support we received last year, and still receive. I am richer for this lesson.
Through the horror that was 2013, Radical Man (self anointed) and another mutual friend of ours called Sharpie and their families, really astounded me with their support. I had only met Radical Man and his family about four years ago. And yet, together, Radical Man, Sharpie and myself carry on like siblings. We have joked that Radical Man is the oldest brother, Sharpie is the middle sister, and I am the baby.
There is loads of facetiousness in our interactions and that is perhaps why I feel so close to them. My own family and siblings thrived on facetiousness and sarcasm through our growing up years. So Radical Man and Sharpie have plonked themselves into the part of my brain and heart where the deep connections with people are kept.
They could turn up at my house anytime and make themselves at home on my sofa and it wouldn’t be strange, or they could eat the last of our hidden chocolate stash, or borrow our things and break them in an annoying sibling type fashion and that would be fine by me.
Throughout my ten months of active treatment when I was wallowing in the depths of Struggle City, my phone would ‘ding’ with a new text message. It would very frequently be Radical Man or Sharpie with something to say, sometimes stupid; sometimes meaningful; but always appreciated.
When I came home from hospital after having my first mastectomy and axilla clearance with surgical drains, Sharpie texted “be prepared for a front door deposit of an edible kind” and Radical Man would text “food at your door”. And without having to type any more words than necessary, the gourmet food would magically appear; fresh baked enchiladas; the best Italian meatballs with napoli sauce that was garnished with fresh basil; the most exquisite Massaman curry complete with toasted almonds and coriander; the heartiest family lasagne; a Sharpie favourite Chow mein, warm cookies freshly out of the oven; or an extra batch of cookie dough for the freezer so they could be baked for our kids again down the track.
My children would say… “Mum, that was the best spaghetti I’ve ever had. Even better than yours and Grandad’s”.
When I was halfway through chemo, ‘ding’ went my phone… “I don’t want thanks”, Radical Man texted… “But please tell me if you can’t be bothered cooking, as I’m not a good guesser”.
Along with all of the incredible meals we gratefully devoured, came more and more of the supportive texts, and those ridiculous Facebook message stickers, little out of the blue silly symbols; big thumbs and predominately smiling faces that are rather annoyingly easy to send to someone by mistake. Those would later become a bit of an in-joke between us.
Then Radical Man would message “We are on your Team!”
At the time I would laugh and shake my head. That Radical Man and his family are hilarious. Yet the “We are on your team!” messages continued to come. “We are on your team! Sounds like you need some lasagne” texted Radical Man.
There was also the time Radical Man sent me a picture he took of the shoes of a colleague on a course he was attending. Ever so thoughtful to feed my penchant for photographing the shoes of my doctors, I was delighted!
In my haste to start overcoming the impacts of my cancer treatment, I signed up for a half Ironman Triathlon. It had been a long term goal I had been working towards through running and doing some sprint distance triathlons. It was while having the best fitness and body weight I had achieved in years, that I found my lump and it was all down hill from there.
In February this year, Radical Man and I, along with another mate of his, sat glued to our computer screens, adrenaline filled and poised with trigger fingers to gain entry into an event we thought might sell out in minutes. With a blend of absolute terror and excitement we gained entry into a Half Ironman Triathlon which involves a 1.9km swim, 90km bike ride, and a 21.1km (half marathon) run. We immediately messaged “Can’t quite believe we just did that!” And “I’m still in shock!”
There were well meaning people who suggested I was being really unrealistic. That I was pushing myself too hard. But Radical Man never did. We believed that each other could achieve it and there was nine months of training to pull it together for us.
Then rolled round June and it became pretty clear to me that in light of my very slow, post treatment, fitness progress and my continued pelvic health issues thanks to Tamoxifen, I would not be able to pull it off this year. So I had to withdraw from the event, as did Radical Man’s other mate, and this left just RM to go it alone.
Late in November, my family and I took a 1700 km road trip to see Radical Man complete his first half ironman. It was a no brainer… ’cause “We are on his team”.
Congrats to Radical Man on his achievement and thanks for continuing to inspire me to persist at the times when I feel like giving up. Those stickers and messages of support meant more than he will ever know, and watching him run into the finish chute and stop to give Mrs Radical Man a big smooch brought a tear to my eyes. Like me, Mrs Radical Man also picked a good one! To be there cheering Rad Man on with twenty or so of his friends and family all dressed in orange made this an incredible weekend.
As Radical Man himself would say… “How lucky are we?”
It’s that time again folks!
I have been so inspired and thrilled by the responses to the Shittytittie Chemo Cut Reveal Challenge! Almost 90 different people have contacted me and made a commitment to themselves to live better lives, contribute more, treat themselves with more respect, embrace their community and environment. The inspirational list of things goes on and on! Yet it occurred to me that I hadn’t made my own personal commitment to the Challenge.
So I am going to share my challenge with you. It has been partly inspired by my friend Dawnybob’s ongoing achievements and commitments. I had actually given up on the idea of this. But after hearing of her goals and achievements the flame has once again been ignited through all of the uncertainty of future treatment. A little voice in my head says “but you can’t do that you’ve had cancer, and lymph node surgery, and one breast amputated and the other breast to be amputated and radiotherapy soon, and poison pumped through your veins, and years of crazy hormone drugs and blah blah blah…” And another voice is my head says “Just watch me!” So thank you Dawny for being awesome and sharing with me your challenges and bringing to the surface my competitive streak. Dawnybobs wrote…
I am doing my first open water triathlon on Sunday! (750m river swim, 25k bike, 5k run), then in June I am doing an Olympic distance triathlon (1500m lake swim, 42km bike, 10km run). This is all in the hope that I can do a Half Ironman triathlon (70.3) in August (1900m swim, 83km bike – 21km run). Not bad considering I couldn’t run a mile in Jan-March (with a dodgy knee). Lisey does this get us a new haircut? Oh and another change in my life is I am applying to join the fire service and I am halfway through a massage qualification! Phew I didn’t realise quite how many changes I am making! x
Dawnybobs is an amazing role model to her 3 young sons and what strikes me about her is since I have known her, her attitude has always been positive. She is such a ‘go getter’, having taken up running after having her children several years ago, she has now completed so many fun runs, half marathons and marathons it is ridiculously inspiring! Late last year, we joked about how we would do a Half Ironman triathlon together even though we live on opposite sides of the world. Plans changed for me a little this year. So these kinds of goals had been swept under a rug.
I have recently (and very publicly thanks to this blog) been wallowing through the murky waters of chemo and was in doubt about what my future holds. But I have set myself a goal and this has helped switch the light on. It has helped me see that this year is just a temporary blip in the scheme of things.
So once chemotherapy is done, and radiotherapy is done, and the scars from 4 surgeries in 2013 have healed, once I am understanding the side effects of tamoxifen and my potential early menopause at 38 years old, I will begin some serious training for my first Half Ironman Triathlon (also known as a 70.3 which refers to total the miles covered) 1.9km swim, 90kms on the bike and a 21.1km half marathon.
Yes, by spring 2014, I will be close to crossing the finish line in a Half Ironman Triathlon chute. I might even wear lycra. And I will do it with two fake breasts (or possibly none if the radiotherapy damages the plastic surgeon with the hairy face and tie’s handywork!). And in that finish chute, I might even stop to kiss Mr Cool and the kids. Unless I’m worried about getting across that line seconds away from ticking into a new hour. In that circumstance I might be compelled just run on by.
This seems like a ridiculous goal to have at the moment, with so much treatment ahead and unknowns. But life is pretty ridiculous isn’t it?
Since I am continuing to run (slowly) through chemo, I figure a fitness goal will help me immensely in both physical and mental respects. So what have I got to lose? I get such a lift after walking and running. It is so beneficial for fatigue management and mental health. I figure that integrating some swimming in the pool when the weather warms and I heal from radiotherapy will be great for my arms and lymph node surgery scaring issues. Plus I love riding my road bike and it’s something I can do right now.
The key will be having realistic expectations. Circumstances are different now and my body will have been through an incredible amount of changes this year. One step at a time!
It’s a long road ahead as I lose fitness, gain weight and suffer the effects of the chemo drugs and radiation, but I hope to heal and work at getting back to where I was pre diagnosis last December where I had done three triathlons and was absolutely loving the challenges and achievements I had set myself. What I accomplished last year was amazing and showed me that you can achieve anything if you set your mind to it. No one is permanently stuck in the same tracks. We can all head in new directions.
So that is the shining light ahead for me.
On that note, here is Shittytittie Chemo Cut Nine.
The final cuts where done at home a few days after Punk Chick worked her magic. My hair started shedding on about day 14 after my first dose of FEC chemo. Hair from other parts of my body surprisingly went earlier as I embarrassingly blogged about here.
It was important for me to shave the hair before I started losing great volumes of it all over the house. In the days before we shaved it, there was hair dropping onto the kitchen benches, falling onto my dinner plate and getting stuck in my tooth brush. So it was definitely time to take control of it and have some fun.
It was also imperative for me to involve our young children in the final cuts and shave. They watched and took pictures as our good friend Mr D documented the whole thing on his camera. We laughed as the hair fell and there were some tears. It was a very emotional process but empowering as well.
Introducing to you Shittytittie Chemo Cut Nine – Mr T. Remember him from that 1980’s show “The A-team”? Incredibly, Mr T was treated for T-cell Lymphoma in the 1990’s. He said lots of crazy stuff back in his prime. But one of the most sensible things he ever said was…
“Everything started as a dream. You gotta have insight, know what you want. You gotta have a plan. Like I tell anybody, if you fail to plan, you’re planning to fail. I’ve been planning ever since I was a youngster. You’ve got to start from somewhere.”
And start from somewhere I will!
Please join the challenge! Only one haircut to go! Lets get to 100 peeps in the Shittytittie Chemo Cut Reveal Challenge!
Take it from me…
Bendigo Health Foundation Click to DONATE
Today I showed up for my running club’s second run for the cross country season. A gently undulating 7.6kms through bush trails and roads. A year ago, I weighed 18kgs more than I do now and I had just committed to starting a regular exercise regime of walking daily after many years of inactivity. Within three weeks I was jogging and walking from tree to tree, or the next letterbox, or that light pole up ahead. A few more weeks and I didn’t have to stop to walk anymore. This weight loss may have helped me discover the cancer or it may not have. I will never know.
I have run over 1500kms in that time and have been diagnosed with breast cancer. I’ve since had two surgeries and am one third of the way through my FEC -D chemotherapy regime that will finish mid July. The year ahead also has a course of radiotherapy that will last five weeks and there will be more surgeries back in the big smoke with the surgeon and then I will start on my five year course of hormone therapy. But today, I feel totally comfortable with a 7.6km bush run. I have a lot to be thankful for. I didn’t run this course a year ago, because back then walking 4kms round the streets was a real struggle. But my ‘future self’ kept whispering to me to persist with it.
Running while on chemo is a bit like having all of your reserve tank taken away. It’s akin to dragging a tyre or carrying extra weight on your body. I am fit and comfortable, I am just slower than normal and I can’t accelerate or pick up the pace as I used to be able to. I have less red blood cells to carry oxygen, I feel this on the hills. And there are the effects of the drugs on my heart. The most surprising side effect is that today many actually gain weight while undergoing chemotherapy for breast cancer. This is due to the combination of anti-nausea drugs that allow people to continue to eat, the use of steroids in the anti-nausea regime, and the general lack of exercise due to being ill or recovering from treatment. (Shhhh, don’t tell the running handicapper about the steroids. I might be DQ’d.)
I’m a little slower than last year, but that’s okay. I am doing it and the benefits of continuing to run and walk where possible through chemotherapy far outweigh the risks. There has been a fair amount of research on the topic of exercise and breast cancer. Exercise has been shown to improve quality of life, improve self-esteem, reduce fatigue and reduce rates of recurrence. There will likely be times when a walk will feel like a marathon to me and other times when running feels fairly normal. The trick for me is to make sure I do enough to be of benefit to me through treatment, but not too much.
Today, I’m caught between feeling like the old me and feeling like a person being treated for cancer. Now that the head hair is gone, my appearance is putting me into the second box in the eyes of everyone I meet. It amazes me how a bald head screams cancer. But I feel absolutely fine and I don’t need to run the shorter courses which has been suggested, and I am taking it easy and listening to my body.
What frightens me most is the possibility that some people think I might die from this disease. You can feel it in their approach or glances. There is the constant reminder that breast cancer is serious and the threat of it is never far from my mind. Fortunately on many of the days in each of my three weekly chemo cycles the person with cancer doesn’t exist. Except for the bald head, I mostly feel like the old me. So I’m not going to let the bald head define my experience and I’m not going to lay on the couch and play the part.
There is a touch of sadness as I hear about all the goals other runners have for their year ahead. I had planned a great year of half marathons and a 70.3 Half Ironman Triathlon at the end of 2013. But all of that is just on hold. It is still inspiring to me to hear and read about all of the great things people are achieving.
Today whilst running, the sun was warm like that first spring day; surprising as we rapidly move towards winter. There was the joy of movement and breathing and there were interesting and varied textures to run over underfoot. There were different smells in the forest and hot dusty sections. The breeze swirling around my exposed ears felt wonderful. The sun on my neck felt warm. Sensations I have never felt having lived with with long hair for most of my life. There were birds chirping. There was wind, and at one point about 6km’s into the race a hill climbed gradually for 400 metres. Magically, the wind shifted behind me as if to say “I am here and I am offering you a helping hand”.
Being handicapped races, the slower runners head off first, and it is kind of comfort to know the rest of the field will at some point catch you and swoop you up and help you get home. I love that half way through my run, the fastest runners are only just starting and yet they still catch me. Today, I was nearly last in the field but none of that matters. I am out there doing it.
There is the awesome comradeship at our club as the faster runners catch you and cheer you on as they fly past. Their feet don’t touch the ground and they get smaller and smaller as they race ahead into the distance. And there is the wonderful connections of chatting with everyone afterwards and watching the children enthusiastically participate.
The experience of running on days like this is life giving. There is a total mind and body dialogue that occurs. With cancer, there is a new doubt. As I run I am asking myself if I can do it? Or should I be doing it? And the answers are clear, yes I can and yes I should. There is too much to be gained.
On Mothers Day last year, Mr Cool bought me a pair of sneakers. It’s Mothers Day in Australia in a few weeks. I hope I get a new pair! These ones have carried me a long way in the last twelve incredible months of transformation and learning. If I feel well enough in two weeks I hope to take my bald chemo head for a run in the 8km Mother’s Day Classic fun run in our town which raises money for breast cancer, hopefully in some new snazzy sneakers.
You can register to walk or run this 4km and 8km event held on May 12th in regional towns and cities all over Australia at http://mothersdayclassic.com.au
I have developed a complication of lymph node surgery called cording. It’s where the remnants from the surgery form scar tissue that clumps to structures within the arm, significantly reducing range of motion. Up until this week I have struggled to do most tasks that I previously took for granted such as hanging out washing, reaching for tea cups, lifting children, straightening the arm fully and pole dancing. My useless ‘fully axilla cleared’ arm makes pole dancing really difficult so might have to give that a miss for a while (wink, wink)!
This complication has allowed me to meet a Physiotherapist with dreamy hands who is my vision of Snow White. Her perfect porcelain skin is framed by long hair. Rather fortunately and to my delight, through some hospital error I am checked in at the Radiotherapy Department reception which is where Snow White comes to meet me. Together, we get to walk all the way across the hospital to the physiotherapy treatment rooms on the other side. We spend a lot of time walking the corridors alone in transit getting from one department to another. The times waiting for lifts were a little awkward on the first visit. What will we talk about? The weather? How slow the lifts are? There were some awkward silences at first. But today I made her laugh twice and hasn’t yet cottoned onto my stalker tendencies.
My Snow White is getting in there and really making a difference. There is no knife like the surgeon. No fancy shoes and designer dresses. Just her unassuming hospital physiotherapy attire and her precious fingertips and palms. These push deep into the tender points in my armpit, shoulder, bicep and forearm, releasing the muscle and ligaments from the fibrous, scar tissued, tree roots. All of this physio work and at home stretching have improved the situation immensely, lengthening my arm so I can straighten it again. The massage and stretching can break these fibres and provide instant relief. On our first meeting, I wasn’t so lucky, but on the second we heard a snap. Incredibly there was about a 25 percent improvement after one session and another 30 percent on the second and now I almost have full range of movement again. I might have to ease up on the accelerated progress when she assesses me though, if I want a few more visits with Snow White. Might have to ‘pretend regress’ a bit. Thankfully, at present she is still eager to see me again.
Lymphodema is a cruel condition that afflicts women who have had axilla surgery. As if, the experience of breast cancer isn’t enough. It will be a real threat to me for the rest of my life and this will be in both arms as I will be having more lymph nodes removed when the second mastectomy takes place in August. So both armpits will have been tampered with. I have been referred to the Lymphodema Clinic at my local hospital for an education session in the near future.
Today, Snow White is pleased with my progress as I now have enough range of movement to ride my road bike and run. Although swimming freestyle would be a bioemechanically helpful activity to do, she cautioned me against swimming in public pools given the compromised immune system I have throughout chemotherapy. No amount of chlorine is going to protect me from the various lurgies at the indoor pool. I can practice my “air freestyle swim technique’ though, lol. Maybe even some ‘air guitar’ or some ‘air pole dancing’. Lucky it is autumn here with cooling days and with deciduous leaves changing their hue. I love this time of year in my city where many streetscapes resemble Europe because of the historic buildings and tree lined streets. All of this is a prelude to winter and snow in the Australian Alps, which happens to be my favourite all time Australian place both personally and professionally when I used to lecture in a subject called ‘Winter Alpine Environments’. I can’t believe that breast cancer has seen me through two changing seasons of 2013 already.
I am optimistic that with my Dreamy Handed Physio’s help, there will definitely be a 70.3 Half Ironman finish for me in my future. Just not this year as planned. But it will happen. I just hope my useless arm doesn’t make me swim in circles. All of you can hold me accountable to this goal declaration. I am optimistic as the fire for fitness and triathlon has definitely been ignited.