just call me sinead

This journey is still proving itself to be a bit of a cha cha. Last weekend I found myself in hospital on the Oncology ward with a drip in my arm, an excruciating headache and nausea. It came on top of a traumatic chemo round, the allergic drug reaction and lots of adjusting and adding drugs to control my nausea. It was pretty awful. As I hadn't had dinner (due to being in A&E at dinner time) they couldn't give me anything stronger than panadol. At 2am with a drip inserted for hydration and my blood test results back they finally administered a much stronger drug. Yay! At least it took the edge off. 

The next day Mikey came to sit with me in hospital and Beth went to the airport to get Holly, who was arriving from London. I was so excited to see her but disappointed that it would be in the hospital. Not the homecoming I'd planned!! The doctors did their rounds and talked about all the factors that caused me to end up in hospital. They gave me a new regime of drugs and strict instructions on what to do to manage my nausea and headaches. They also said that since I was so sensible I could do it all at home. Yay! I was out of that hospital gown before you could say "Just relax while I insert this catheter!" (That did not happen to me but it did happen to the guy in the bed next to me.) Phew! Dodged that bullet! So the reunion happened at home and it has been the best thing having Holly here. Beth and Holly relaxed quickly into their routine of teasing me, face pats and "harden up" dialogue. Fun times!  

Mere gave me these "oops sorry you're in hospital" balloons to cheer me up.

She had wanted Disney Princess balloons but I am more than happy with the hearts!

This week I also attended a Look Good Feel Better workshop. They are an amazing charity that aim to put a smile on the face of every woman with cancer. That statement is so true. I was nervous about attending as I had still been feeling quite nauseous and unsteady. But they were so warm and friendly, they really put me at ease.  Each lady has a support person to help them with skincare and applying their make up. Mine gave me a divine facial. I must have looked pretty relaxed as the lady running the workshop said, "Well, Stacy has gone to sleep!" Either that or I had started to snore. I went in feeling below average and came out feeling revitialised and dare I say it - pretty! They do fulfil their brief "that with makeup, skincare, skills and positive attitude they can transform the look and outlook of NZ women with cancer." I left with a smile on my face and a bag full of make up tailored just for me! I felt so spoiled and incredibly lucky to be a part of it. They are such a worthwhile charity to support.

Check me out!

I think I look pretty damn good!!

Later that day, my hairdresser Alice, Beth and Holly joined me for the big moment... to shave off my hair. Hair loss is a side effect of the chemo that I'm having. They say it starts round Day 14 after your first dose. Mine hadn't really been doing much except for the usual handfuls that fall out on a regular basis. It's the anticipation and waiting for it to happen that can be distressing, then the actual clumps of hair on the pillow themselves. In an attempt to gain back some power in a situation where I've been pretty powerless, I decided where and when my hair would come off. At home with my lovely hairdresser and my beautiful girls, with laughs, teasing, love and moral support. Losing my hair has been quite a big thing for me, more than I had realised. For my whole life I've said something about who I am with my hair. To not be able to have it and to have to wear a wig have been big things for me to come to terms with and grieve over. You might think it's just hair but it's part of my identity. Choosing how my hair loss would happen has made that grieving easier. It actually turned out to be fun and there were no tears!! Yay! I was also very honoured that my nephew Josiah shaved his head to support me. So now we are baldy buddies!

The girls all think I look quite like Sinead O'Connor.

 So instead of inflicting my photo on you

I'll leave you with Sinead!

a side of daffodils

It turns out that I can pretty much have adventures wherever I am. I don't need to look for them. They just seem to find me...

On the morning of my first chemo round I nervously approached the Oncology Day Stay Unit. The staff were so lovely. They are very welcoming, trying to put you at ease, especially when it's your first time. You can tell the newbies - we still have our hair! I was set up in my comfortable lazyboy chair. Beth and I were greeted by the other patients and their support people. Everyone is so friendly. There is a real sense of camaraderie and support, that we're all in this together. Finally I was settled in and the morning was progressing well. Beth wandered up to the cafe to get me some treats and everything seemed to be going to plan. I was feeling way more relaxed. This was not as bad as I thought it would be... 

Apparently about 5% of people are hypersensitive to the chemo drugs. It turns out that I am one of them! After a while the sensitivity kicked in followed by an allergic reaction to the drug they used to manage it. I felt like I was going to black out. My usually low blood pressure and steady heart rate shot up. I was so shaky with the shock. Suddenly it was how many medical professionals can you get in one room? 

So while the other patients are sitting peacefully receiving their chemo and chatting quietly with their support people, I'm all sobbing and fainty with 25 medical staff around me! Not the day Beth and I had envisioned!! Eventually everything calmed down and I resumed chemo with the second drug, which proved to be absolutely uneventful. Whew! Our lovely friend Zoe had arrived at the height of the madness with a beautiful corsage for our chemo date. Finally I was able to put on my corsage and enjoy the fine company of Zoe and Beth.

It was a long day. You know you've stayed too long at the party when they start stacking the furniture and mopping the floors around you! We gathered up our things. Beth went to get the car and I made my way to the door. The Cancer Society had left bunches of daffodils there for people to take home. So when Beth came back to get me, she found a shaky lady by the door holding a bunch of daffodils in one hand and a bright yellow Cancer Society balloon in the other! 

The perfect ending I think... Round One of chemo with a side of daffodils.

Daffodils in Wellington for Daffodil Day.

Please support the Cancer Society here.

They give us all hope!

place to be

This song has been resonating with me lately... 

When I was younger, younger than before
I never saw the truth hanging from the door
And now I'm older see it face to face
And now I'm older gotta get up clean the place.

And I was green, greener than the hill
Where the flowers grew and the sun shone still
Now I'm darker than the deepest sea
Just hand me down, give me a place to be.

And I was strong, strong in the sun
I thought I'd see when day is done
Now I'm weaker than the palest blue
Oh, so weak in this need for you.

Chemo starts tomorrow. 

So I find myself...

darker than the deepest sea,

weaker than the palest blue,

looking for a place to be

and in need of you.

I am seeking God's embrace.

A lovely friend sent this verse from Psalm 94 to me.

When I said "My foot is slipping," your unfailing love Lord, supported me.

When anxiety was great within me, your consolation brought me joy.

Just breathe...

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

expect the unexpected

I've been on this breast cancer journey for a few months now and I would still rather be going to Paris! I had my surgery two weeks ago and it went really well. I survived the several painful, invasive procedures in preparation for the surgery, then the surgery itself. Apart from my normally low blood pressure finding new depths to fall to, I felt much better than I thought I would. Preliminary tests showed that my lymph nodes were clear of cancer and that the tissue they removed with the tumour was all clear too. As everything had gone well I was allowed to go home the next day. It felt so good to be home, to sleep in my own bed, to sleep deeply without being woken up to see how I was sleeping!

I was so happy. I felt like a big weight had been lifted off me. I had completed the first hurdle and the relief was incredible. I've been resting, sleeping, healing, reading, quietly crafting while watching endless episodes of the Gilmore Girls! I have been cocooned by the love, care and prayers of my gorgeous family and friends. I've been feeling grateful, feeling peaceful, feeling relieved, feeling I can get through this...

Then I had my post surgery appointment with one of the specialists from my medical team. They gave me the definitive lab results of the lymph nodes, the tumour and surrounding tissue that they removed. My lymph nodes were still clear but because my cancer is the spreading kind, they felt that the margin they had taken on one side of the tumour was not enough. I knew that there was a possibility of things showing up that they hadn't picked up in the surgery. Maybe I would need chemotherapy. I had expected a time for radiotherapy to start. I did not expect that I would need more surgery, that news completely floored me. They are looking at the long term, that I have the best chance of the cancer not coming back. I want that chance!

So while I'm grateful for the expertise and diligence of my medical team, I once again find myself feeling the weight of my grief... needing to find the courage to keep engaging in the nature of this cancer journey - walking two steps forward, four steps back... learning to expect the unexpected!