Well it's been a long, slow, hard journey of recovery since being discharged from hospital. After initially feeling much better being home (I think that was more psychological than physical) life settled into days of constant stomach pain, nausea and severe headaches. Resting, sleeping and endless, daytime TV were all I could manage! Things started to look up when my oncologist prescribed me some medication to deal with the stomach pain, nausea and headaches. He pointed out that I had been seriously ill and it would take time for my body to recover. He also said that I won first prize for the worst outcome for chemo out of all the patients that they've treated at Auckland Hospital this year. That in his 20 years of public and private practice he's only had one other person develop chicken pox. I am truly special!
With all this resting I've had plenty of time to reflect on life and where I'm at. So when I saw Annie Lennox on TV the other night, something about her got me thinking... She was talking about turning 60 at the end of the year, which surprised me as she hasn't seemed to age over the years. As she talked about her music and the inspiration for her latest album, she sparkled. That energy and sparkle made her seem ageless. Then I had a revelation - I had lost my sparkle! That everything I've been through this year had sucked it out of me. When I thought about it, I hadn't smiled in a very, long time and that the relentlessness of feeling so ill had worn me down to just existing. That is not like me at all. I normally try to look for the best, the happy, the joy in life and laugh heartily and loud. It has been hard to feel so low when I know that my mental wellbeing and a positive, hopeful attitude play an important role in fighting cancer alongside the treatments and therapies.
A dash of gold, glittery sparkle!
It's just as well that I have the best cheerleaders in my family and friends. They keep telling me that I'm doing so well. That I've come so far. Their love and support mean even more to me when I've been finding it so tough. I've also been given some breathing space to let the medication work, to rest up and feel better. Hormone therapy has been postponed for now and radiation therapy is now scheduled for January so I can be well enough to deal with it.
She's definitely got sparkle!
I still have a long way to go and more treatments to face but I'm starting to feel a bit better. I'm focussing on the long term picture and getting my sparkle back!
Gold sparkles - imgkid.com - the image kid has it!
Astral Double collage by Eugenia Loli. Find more of her artworks here.
Yesterday was my birthday and I have to admit that it took a lot to find the heart and energy to celebrate it. I recently spent ten days in hospital dealing with serious side effects from Round 3 of chemotherapy. My white blood cell count fell really low and I developed a condition called neutropenia. Due to this low blood cell count the chicken pox virus I had as a child was also reactivated. Without white blood cells to fight it, it returned with a vengeance. Apparently this is a rare complication so it made me very ill, with rolling fevers of up to 39.9 degrees. I was in and out of consciousness continually, with mild hallucinations. Apparently I told Mere I didn't like the landscape of Rangitoto in my room because it had goblins in it. When I woke up, she said she couldn't see them. I looked really hard and couldn't see them either! My family are now regaling me with all the funny, bizarre conversations I had with them.
At one point, when they finally worked out what the spots were, I was woken up by four oncologists in full masks, gowns and gloves peering at me over the bed. I had lost all sense of reality and thought I was in a scene from the movie Contagion. It turns out I was highly contagious so they wanted to move me out of the Oncology ward as soon as possible. I was a risk to all the other patients there with low blood cell counts. So they whisked me up to a pressurised room in the Infectious Diseases ward. Everyone who treated me from then on were fully masked, gowned and gloved.
It wasn't this bad but I was hazy with sleep and fevers.
I was actually taken to the Infectious Diseases ward on a bed!
I had severe nausea and headaches and to be honest, it felt like one endless nightmare. My family took turns sitting with me during the day, which helped to separate the days from the nights. I saw at least twelve Oncologists, checking in and monitoring my condition. One thing they all agreed on was that I should not have any more chemotherapy, that the risk to my life and health was too great if I continued. I started to recover very slowly. I was so desperate to be well enough to leave. They set me the goal of eating, drinking and taking my medication in tablet form rather than needing a drip. Yay! I got there but I was still very ill when I got home. Beth and Mike were champions making sure I was well fed and looked after. I felt very loved. It was good to be home.
So even though right now I am physically at the lowest point of this breast cancer journey, feeling completely broken in my body... I can appreciate the love and support of my lovely family and friends... I can hold onto the hope of future health and wellness... I can remind myself that I don't have to do anymore chemo! Yay! That is such a relief... I can be thankful for my birthday and making it this far... I can remember and celebrate that I am beloved by so many.
I had the loveliest birthday in the end. I found flowers, treats and surprises on my doorstep. My phone and Facebook overflowed with wonderful birthday messages. I had cake with the family and a delicious dinner made by Beth and Mike. I feel so loved and blessed. Thank you!
This is not my current birthday.
I thought we'd all enjoy a flashback
to my very, happy 50th birthday!
Biohazard suit image from Resident Evil, Sony Films
Well, the third round of chemo is done. Only one more to go!! Yay!! It was touch and go to as to whether it would be postponed due to a very low white blood cell count. After several blood tests, with the last one an hour before chemo was due to start, I was given the thumbs up. That was such a relief as I just want to keep moving forward on schedule without any more surprises. The actual chemo went well but I am way more nauseous this time. I know I can keep doing this with a good supply of anti-nausea meds, lots of rest and the continued support of my very lovely family and friends. This is Pink October - Breast Cancer Awareness month. Did you know that every day 7 women are diagnosed with breast cancer in New Zealand? Every day!! That is a heartbreaking statistic. Two of my dearest friends - both young women, are now walking their own breast cancer journey since I was diagnosed. It feels like an epidemic. The New Zealand Breast Cancer Foundation are at the forefront of research, communication, information and practical support for women, men and their families going through diagnosis and treatment for breast cancer. The work they do is wide reaching and key for reducing the incidence rate, early detection, effective treatments and lowering the death rate from breast cancer. You never know when you will need them...
This is me last year. Still smiling with just a few kilometers to go!
Almost a year ago I was a Golden Charity runner fundraising for the New Zealand Breast Foundation in the Auckland Half Marathon. I did it for my sister Karen, in honour of her courageous journey with breast cancer. I started training at the beginning of the year, running 1.5 km and sounding like I could die imminently! After 11 months of training I completed the beautiful 21.09 km course, including running over the spectacular Auckland Harbour Bridge, in a reasonable time. Even with a serious knee injury! I was elated. It was my biggest, physical challenge since having babies!! I fully intended to do it again this year. But this year I've had a different sort of marathon to complete - my very own breast cancer journey. Life is full of the unexpected!!
This is me now. Feeling a little bit droopy after chemo. So not as smiley as when this photo was taken!
Home. I've been thinking about what that word means. Yesterday we said goodbye to Holly. Luckily it's only a little goodbye as we'll see each other in Melbourne for Christmas. Not long to wait! I'm so glad we have that to look forward to... something to hold on to as I negotiate the post chemo nausea fog. Luckily it is starting to lift and life feels a bit sunnier again.
Love these guys!!
Anyway... Home...
Holly lives in London. It's her home. She came home to look after me. New Zealand is our home. I love flying home. I always get a thrill when the plane dips low over the waters of the Manukau with Auckland laid out before me. That says home to me.
Sitting in the sun at St Heliers beach watching the waves and Rangitoto says home to me.
Misty days at Huia says home to me.
The dawn service at the War Memorial Museum says home to me.
The National Anthem anywhere says home to me.
Auckland City sparkling in the sun when you drive over the Harbour Bridge says home to me.
Tuis singing in the bush says home to me.
Marmite on Vogels toast says home to me.
That snuggled up in bed feeling, listening to the rain says home to me.
The smell of fresh baking in the oven says home to me.
Summer barbeques and dinner on the deck says home to me.
Talking endlessly with friends says home to me.
Watching good movies on the couch with Beth, Mike and Holly (when she's here) says home to me.
Laughing loud with my sisters over a coffee or a glass of wine says home to me... we can pretty much laugh loud over anything!
Home - it's a mixture of place, people and feelings. Any one of these... anytime, anywhere can give you that feeling of home. What says home for you?
For me, home is these people. This crazy, funny, loud, generous, larger than life, do anything for you, love you with all their heart bunch of people... my family says home to me. Even in the midst of the toughest, hardest, saddest days they give me that "home" feeling.
Just a note: The guy at the beginning is JP from Photobooth and Moustaches and not a new addition to our family! All images were taken in their vintage photobooth.
The track is Home by Edward Sharpe and the Magnetic Zeros
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.
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.
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.
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