family, friends and a photobooth

I've been lying in bed and listening to the rain. I know so many people are keen for the promise of the warmth and sunshine of spring but being wrapped up warm in my comfy bed listening to the rain brings back wonderful, childhood memories. The feeling of being cocooned, cozy and safe in bed with the rain drumming on the roof. I'm holding on to those feelings after a pretty full on week.

Nothing says cozy like my ruby red slippers.

There's definitely no place like home!

My pre-chemo oncology consultation was a pretty long, drawn out discussion with two of my oncologists. We went over exactly what happened during and after my first chemo round. You take it seriously when your chief oncologist starts to say that we'll try this round and then consider whether we'll stop it or carry on. That the benefit of treating my breast cancer cannot outweigh the risk to my life and longterm health. I was very grateful to have my sister Karen with me. She joined in the discussion and planning as a medical professional informed by her personal experience as a breast cancer patient. Her input was valued and key to the planning for this round. Changes were made with my chemo drugs and the follow up regime of meds for managing my nausea at home (hopefully without the dibilitating headaches). So far so good.

Karen picked me up for chemo in good time. I was a mixed bag of emotions - anxious, fearful, worried... I was very afraid of what might happen. I know many people were holding me up in prayer and sending me all the healing and love vibes they could. That gave me the courage to face whatever this day would bring. The staff were were very kind and thorough in getting me ready for chemo. They knew exactly what had happened before and did not want me to have a second bad experience. Karen was amazing - she set up my tray with a table cloth, she made me ginger tea in real cups, she rubbed my arm while the line went in (I have had some trouble with these resulting in massive bruising), she rubbed my back through waves of nausea and hot flushes. She was the best support person/ nurse/ sister ever! Holly arrived part way through and that was such a treat. Her smile and rainbow hair light up the room. My chemo nurse was wonderful and attentive. When it was all done, she gave me a big hug as I left for the day. 

All and all I'm incredibly lucky with how it's gone so far. The second round of chemo went as smoothly as could be expected. This new regime causes more nausea so I am being very careful to manage it well at home. I don't want to end up back on the Oncology ward on a drip. I have been wonderfully supported by the love, care and visits from my gorgeous family and an army of friends supplying the most delicious meals. The kindness, thoughtfulness and care in preparing these meals has made the nausea so much easier to bear.

 Everything comes wrapped in love. 

The best medicine!

With all the ups and downs, backwards and forwards, "cha cha" of this cancer journey, life can be tough for not just me but my family. They are trying to negotiate this journey for themselves alongside me. The overwhelming feelings, the helplessness, the emotional, psychological and physical toll has impacted us all in unique ways. We try to deal with them the best we can but to say it's hard is an absolute understatement. So on the Saturday before this chemo round we planned a family dinner. A time where we could enjoy being together, belly laugh, talk loud and let our hair down - some more literally than others! It was definitely a fun, crazy, celebration of love and all of the good things that make life worth living. 

I'll leave you with some photobooth snaps from the night. They tell it all... 

Doin' the cha cha our way!!

We even managed to include
Esther and Ben who are 
living far away in NYC.

My baldy 
buddy Josiah!

                                                                    

the cha cha

The last few days have been a rollercoaster of emotions. In the weekend I got the heartbreaking news of a helicopter crash in Wanaka that killed this lovely, generous, funny man who had a zest for life, his family, his friends and his faith. He was on a weekend away with good mates, several of them were also injured in the crash. The impact of this shockwave is resonating through the St Paul's community.

Jerome Box

A man who lived life to the full.

John was Jerome's quantity surveyor for many years. I can just see them sitting down so many times to discuss life, families and faith, not just the work at hand. I can see Jerome's wry smile, hear his chuckle and listen to him share his unique take on life. My heart is aching for his wife Adelle and their gorgeous children... and the other injured and their families. It's shocking when the tragedies of the national news actually rock you and the world of people you hold dear.

Then I had my Medical Oncology appointment. All throughout my diagnosis and treatments every medical professional has told me that I don't need chemotherapy. That for the grade and stage of my breast cancer, surgery and radiation therapy will be enough to effectively treat it. That I will need hormone therapy to suppress the estrogen that feeds the cancer cells (in the form of a daily tablet) but no chemo. I thought the appointment would be straightforward. "Here are your results, here's the prescription for your hormone tablets, good luck with radiation therapy next week..." I became suspicious when the oncologist said I'm going to discuss your options for treatment. It turns out that the pathology from the surgery shows that my tumour is Grade 2 and not Grade 1, so now chemotherapy is part of the treatment to improve my chances that the cancer won't come back. Usually in journeying situations an upgrade is much appreciated. Who doesn't want to fly business class or have a better hotel room with a lake view? On the breast cancer journey an upgrade doesn't have the same desired effect!

I just didn't think I would have to walk this road and now it's right there. Chemo starts in two weeks. So in preparation I got my nails done, shared a bottle of bubbles with my long-suffering, very supportive sisters and made an appointment with my lovely hairdresser Alice Tucker for a last cut, colour and style before it all goes.

My dear friend Em (who is on her own breast cancer journey) shared this picture with me after we talked about the difficult, discouraging forwards/backwards nature of our journeys so far.

 Rebel Circus

So here I am doing the cha cha, trying to keep a lightness in my step, with a heavy heart and tears streaming down my cheeks.  The great thing is I am not dancing alone, you are all here with me. So grab the ones you love, who are precious to you and let's dance!

exposed

Yesterday I had the planning and set up appointment for radiation therapy. It involved a CT scan in the position that you receive the radiation treatment and the application of permanent tattoo dots onto your skin. These dots enable the machines to line up perfectly each session. You spend a lot of time physically exposed while three people move you and your breasts around - taking measurements, drawing on you and taking photos. Everything is recorded in detail so the delivery of radiation is perfectly placed - quickly and efficiently. I'm so grateful for their thoroughness as I want every opportunity that I can get to make sure this cancer doesn't come back.

The radiation therapists were lovely. They were kind, reassuring and very professional. Despite this care, I have been left with a feeling of vulnerability and exposure that goes way beyond skin deep. I've been thinking about why I feel this way. With a diagnosis of any kind you feel that the power to have control in your life is taken away. Suddenly you are being swept along into surgery and treatments, results and consultations, medical data and statistics. It overwhelms you emotionally, mentally and physically. I'm also a pretty private person and up until recently only a very few, select people have been lucky enough to see my breasts. Now so many people have seen (and examined) my breasts that I have lost count!

It got me thinking about a summer I spent as a teenager at Muriwai Beach. It was all fun and games until I was picked up and dumped by a wave. As I dazedly came up out of the wave, I belatedly realised that the turbulence had caused my bikini to rearrange itself and I was... ahem... exposed to an appreciative audience of surfers waiting for a wave! Ooops! 

Beautiful Muriwai Beach 

Those waves look deceptively calm from a distance.

So whilst wanting to engage fully in every aspect of treatment that gives me a better chance long term, it is much like my teenage experience of being unexpectedly dumped on Muriwai Beach... I am feeling shaken, vulnerable and exposed.

This sign was not around when I was a teenager.

That is me being thrown around by the wave. 

And to those lucky surfers I just want to say, "You're welcome!"

something funny

Anyone who knows me really well will tell you that I have a cheeky, naughty sense of humour. I can be funny by accident and just embarrassing (to those around me) when I try to be funny. I thought in light of my recent hard, emotional posts that I would share some things that I have found funny on my breast cancer journey.

On the morning of my diagnosis I was very nervous and worried. I put on my Gorman vegetable dress - my "happy" dress. Whenever I wear this dress it transforms how I feel. It's fun, colourful and the print is full of vegetable surprises!

The Gorman Vegetable Dress

These are not my arms.

I put on the dress and I already felt better. If it was going to be bad news I could take it in my happy dress. I started to put on my make up and because I was so nervous I didn't really pay attention to how much I was putting on. Apparently there is such a thing as too much make up for a cancer-related medical appointment! Beth came to pick me up and when I got into her car she said "Muuuum, don't you think you've gone overboard with the make up?" I had evening eyes and evening lips for a medical appointment at 9 am in the morning. So the car journey was spent wiping off the excess eye shadow and replacing the bold lip colour with a nude shade of lip gloss. At least I wasn't worrying about the diagnosis!

The day before my first surgery, I had an awful procedure that involved several very painful injections of radioactive dye into my breast. The radiologist delivering the injections was a cheery man wearing a Cookie Monster tie. That did make me smile a little through the pain. Does a sunny disposition and a Cookie Monster tie make it easier to carry out tortuous procedures?

When having surgery you get to wear one of those attractive surgical gowns that open at the back and a front-buttoning cotton dressing gown over the top. It's generally one size fits all. Being short they cover me to well below my knees. I feel so attractive swathed in voluminous folds of well laundered cotton, stamped with hospital property (to deter you from wearing them home I guess). A pair of white knee-high pressure socks complete the outfit! Perfection!

 Yup this pretty much sums up the hospital gown. 

This is not me but I know how he feels!

Once again I was feeling very nervous with all the prep before surgery. They have these great lazyboy-type chairs for you to "relax" in. So I was trying to still the nerves and relax with my feet up when the nurse called me in for a consultation. I clicked the side handle forward and nervously jumped up to meet with her. Unbeknownst to me, I had caught the folds at the back of my gowns in the footrest. That pulled me up short real quick with a loud involuntary exclamation (luckily not an involuntary swear word!). I made Beth and the rest of the waiting room laugh whilst hopefully relieving the pre-surgery tension for others.

My other surgical gown-related incident was the obligatory back flash to the lady in the bed opposite me as I shakily got up to use the bathroom for the first time after surgery. I'm so thankful that I was wearing underwear so it was better than it might have been!

When John was sick we coined the phrase "Kiss My Butt Boy" which was a lighthearted way of saying you're really, really sick and we will do anything for you, anytime. Well my stint as "Kiss My Butt Girl" only lasted a few days. It was abruptly drawn to a close when I showed Beth I could wave my arm and was told I could get up and make my own breakfast since I was feeling so good. Darn! Too soon! Too soon!

Today was the first day in a very long time that I woke up with that "I feel good" feeling. Yay! It's amazing to remember that I can feel like this. I still find the ups and downs and forwards and backwards of this cancer journey difficult to deal with but smiling at the ironies of life and having a laugh in the midst of it all helps me to keep going. 

Gorman image from www.gormanshop.com.au

Walter White resplendent in his hospital gown, Breaking Bad, AMC