Speech!

Dec 2020...because I like this photo

In 1985, I was the youngest person, at the PAH, to have an appendectomy.  I had just turned five. Only days later, after discharge however, I was back. Green goo oozed from the wound. I had peritonitis. As the admission was around Christmas time, I recall making Christmas craft. I don’t know how accurate my memory is, but I feel like I had a bed not too far from a window that overlooked brightly lit buildings. My initial physical examination, to determine the diagnosis has stayed with me. It scarred me. Seriously. The rest of the experience had been positive but it didn't matter. The damage was done. I was now scared of hospitals. To this day, the smell of hospital grade disinfectant hits hard when I walk through the automatic sliding doors; it doesn’t matter whether I am the visitor or the patient. It makes me so nervous. So, years later, when I’ve had other surgeries, I have always welcomed visitors. I can’t think of anything worse than being alone in a hospital bed!

I have another claim to fame. In February 2021, I was the patient with the most visitors. A lovely man, an ex teacher actually, was making up my bed in the room when he told me that I was the “Star of the Ward”. I thought it must have been my great recovery. But, I was given this title because I had the most visitors. So today, I want to do a shout out to all of those wonderful, caring, loving and generous individuals who have supported me along the way. My grandad always says that, “There’s no such thing as a free lunch” and my “Lady of Leisure” status, I understand, comes at a cost to others. 

My diagnosis ten years ago, brought out such generosity towards me. I found it quite overwhelming. I had lots of family help and I do realise that family support is not always a given. Friends came out of every corner, some who I hadn’t even been in contact with for some time. I couldn’t believe it. Strangers showed kindness to me. I recall the first time I had my head shaved when a random customer at the hairdresser shared my pain in losing my hair. I think of the TBC’s, the group of women who supported me and made me actually excited to go to chemo sessions because I knew that I would see them. I remember chatting with the TBC’s, at 3am in the morning, sharing side effects, because that’s what you do when you have steroids pulsing through your veins. 

Now, I have received messages, letters, cards, phone calls, visits, FaceTime sessions, pictures, gifts, activity packs, meals, house cleans, outings…I hope I haven’t left anything out. Well, I think you get my point. I have to say, and I’m sorry, that I haven’t always replied in a timely manner. Even so, I have really appreciated the big and the little things people have done for me and my family this past nearly two years. Cancer/chemo fatigue is debilitating. There are times when I am too tired to think, to say a sentence and of course too tired to do the everyday things that make us feel like a contributing human being.  

May 2021

 
I can’t remember the specific circumstances, but years ago I mentioned to my uncle that I didn’t know what to say to someone who was going through a rough time. And, for that reason, I had said I wasn’t going to say or do anything. And what he said stuck with me. He told me three things, not in these words, but certainly it was his message. You should say something. You need to acknowledge what is happening to them. You need to let them know that you are there. So I did. 

Thank you so much to those those who have said and done something, for acknowledging what is happening and for letting me know that you are there. It means so much. My latest claim to fame? I have the best support network anyone could ask for! 

MEDICAL REGIME (Third line of treatment)
The second line of treatment, shared on my previous post, stopped working after  around three months. I don’t know if it ever worked. The painful side effects weren’t worth it anyway. I was absolutely devastated that I needed a change in treatment. I opted for the oral chemo because at that time I had insisted that I wouldn’t do IV. I started this in the last quarter of 2020. 

Denosumab: A monthly injection to strengthen bones
Capecitabine: Oral chemo - every day for three weeks followed by a week’s break

My Theme Song

Victoria Falls, Zimbabwe in 1998

There’s a song that has followed me. In fact, music has always been a wonderful escape for me. Not saying that I have lived a life where I needed to escape, perhaps I worded that wrong. When I go for a run (well, it’s been nearly two years since I’ve done that on a Sunday afternoon), I stomp the beat on the pavement and stop thinking. I just listen to the instruments, sometimes the words, the catchy tune and relax. I like to think that there’s a soundtrack to my life. A particular song can throw me back to a holiday once had, a sad or fond memory or just reinforce a mood. Either way, music does affect me. 

In high school, my music class loved to sing together. I don’t remember how it came about. We were a group of teens with different levels of music experience and certainly weren’t all solo vocal artists. But together, we sang beautifully. We received an award for it so, it’s not just my word. Anyway, there’s this song we used to sing. 

Beyond school, I can’t say I heard the song all that often but I did come across the lyrics. When I did hear or read those lyrics, I was instantly thrown back in time to those moments where we sang together. When my children began school, at the very same school that I attended, I was warmed to hear that this song, that our music class sang, had become part of the school culture. So, this song, it seemed to follow me. 

Armed with a diagnosis, medical treatment in hand and my lung clear of fluid, I was happy to be going home after a three night stay at the hospital. At that time, I was very weak. I was tired and in pain. Having had cancer return I knew what was before me. By this time I had followed the treatment of three friends who had their cancer return. I knew how this would end for me. This wasn’t how I had planned to avoid going grey and having wrinkles. I wasn’t going to crossfit my way through this one. This really rattled me. I had already decided that I wasn’t going to do IV chemo so I knew that the statistics that the oncologist rattled off hadn’t factored that. There were two ways in which way this story would end; I would have a miracle or each of the treatments would give me an extended period of stable disease. I had a chronic disease but there was treatment. I should have been ok with it all. I wasn’t though. I was very unsettled. Being unsettled is how I lost my voice.

It was funny how so many people around me started saying exactly what I needed. Basically, I did not have any peace. Funnily, and I don’t believe they were coincidences, so many people around me kept on saying the word. I was even gifted a bottle of “Peace” essential oil. Then an old friend, totally randomly, sent me a song. It was a version of a song sung by Zimbabweans. He had no idea of my circumstances and how greatly I was impacted by this simple sharing of a youtube video. He sent me this song because he remembered that I had travelled to Zimbabwe many years ago. Little did he know that it was a song that had become quite special to me. 

Then, if I couldn’t be pointed towards this song any more strongly in my life, the song popped up at another time. At the beginning of 2020, I had become short of breath. When I would be on my back, I could hear, what I can only describe as, gurgling at the back of my throat. I had been handling the oral chemo well and felt reasonable good so I wondered whether I may have picked up some kind of infection. It was at this time that I was due for a bone and CT scan. Well, it wasn’t so much a surprise when I saw 75% of my lung shaded in - it was full of fluid (for the second time). Within a week, I found myself checking into the hospital for pleura effusion treatment. On completion of the paperwork and before being changed into the uncomfortable underclothes, gown and red socks, I was ushered into a room for blood collection. A blood draw is no easy task with my damaged veins and nerves. But, as the collector knelt down to clean my skin in preparation for the prick of the needle, the introduction to a song was blasted through the ward. You won’t believe the song. Just minutes prior, the collector had told me that a surgeon was setting up to sing. Apparently, he randomly turns up in wards throughout the hospital to sing a song. You know, he could have belted out any song. As my blood slowly collected in the barrel of the syringe, he sang MY SONG!

I have included the version of the song my friend sent me, here for you. I pray that you would have peace too. 

If viewing from a mobile device, you may need to switch to the web version for the video to play. Click on "Web Version" at the bottom of this post.

MEDICAL REGIME 

The first line of treatment, shared on my previous post, stopped working after six months. What this means is that the cancer has become resistant to treatment and the treatment is no longer working. At this point the cancer is able to progress and it did. This was very disappointing. This treatment had the potential to keep things stable for years. It wasn’t to be. 

SECOND LINE OF TREATMENT

Zolodex: A monthly implant to stop ovaries from functioning

Denosumab: A monthly injection to strengthen bones

Affinitor: Oral chemo

Exemestane: Aromatase inhibitor 

A gift from mum

Everyone remembers their favourite teacher. We also remember the teacher we really didn’t like. Some of us may even have words (positive or negative) that were spoken to us by a teacher that we never forgot. If it was negative, I’m sorry that this happened to you. I tried my best to make a difference. Maybe this point isn’t always made clear enough to students and parents - teachers really do care. Anyway, that’s not my point here. 

I have said this to say that I never really thought that I would have a student whose life would impact me. Just after my diagnosis in 2019, I attended the funeral of a student that I had taught. Of course, it was very upsetting. The passing of a young person is always heartbreaking. But, I can tell you right now that I think of that student often. I think of their strength, their courage, their positive attitude, their determination. And, when I’ve felt down, or had to undergo a painful procedure, I think of that student. You won’t believe how I can give myself a kick up the butt and get on with things after those thoughts. Hand on my heart, in June/July 2020, when I believed that my time may be up, I was consoled by the fact that I would meet that student again. Truly. Right now though, a year later, I’m not ready for this to be over.                                                                                                                                                                                                                        
I’d like to go back in time. I want to share what happened in the lead up to allowing poison to be injected into my veins.

In hindsight, I can see there were signs of my illness months before. Some days I would get home and sit in the car in silence because I was just too tired to get out. One day, I drove myself directly to the medical centre, after work, because I had been experiencing chest pain most of the day. I sat in the car park at the medical centre almost convinced that I was about to have a heart attack. The pain was so intense that breathing was causing pain in my chest. There are heart issues in my family so it wasn’t completely an overreaction on my part. I was diagnosed with costochondritis. It was nothing to be worried about. I had neck pain and back pain which the physiotherapist just didn’t seem to be able to help with. I requested a different physiotherapist but that change didn’t help either. He diagnosed me with “non-determined neck pain”. I had been doing judo (haha, correction, trying to do judo) for a few years by now and did think maybe all the throwing around was just taking its toll on my body. Argh, I can’t believe I hadn’t broken a bone!

Our trip to America in 2019, was cut short by a week when we flew back early because I wasn’t well. The feeling of relief when the plane touched down…I can’t even explain! I’m sure you know that feeling of being home, finally. I was unwell for a further 7 weeks before I was eventually told by a choked-up, young, female doctor, in ER, after having had a CT scan, of my diagnosis. I remember just thinking to myself, “This is how it ends”.  When you enter the Breast Cancer Club you make friends with people who have cancer. This is a great thing. It just sucks when you see their cancer return, the treatments they endure and then their passing - it then becomes the worst thing to have friends with breast cancer. I realise this may seem to be a cold comment but you know what I mean. And remember, I did say I would be honest. My thoughts aren’t always rainbows and unicorns as some may think!

With the diagnosis written on my medical file, I was checked in to the hospital for a stay. There I would have 400 ml of fluid drained from the lining of my lung. I would also start treatment. I had many visitors. They had sad faces of course. Some cried. Let’s be real, when cancer comes back, there’s an unspoken truth. Everyone is thinking it, “She doesn’t have long”. Please don’t deny this, I thought it too. Everyone says these wonderful words but underneath…c’mon seriously?!

That first night in hospital, I listened on repeat to a song my SIL sent me, “Take Courage”. I can’t really listen to it now because it reminds me of that night. But, I let the words sink in and tried to speak myself into getting on a unicorn and riding into a rainbow. 

The following morning, before the sun was up, I was awoken by the blood collector. I cried when she told me she was there to take may blood. She cried right back. It was so nice later that day when she popped in to see how I was. At that minute, I was with the husband and we were laughing about something. She said that she was glad to see me happy. Either that day or the next, a nurse asked if she could pray for me. That was nice. All these little things, I kept in my heart. And, when I felt down, I remembered the kind people around me. 

Something I also try to remember is that everyone has some challenge to overcome. It may be divorce, death, disease, abuse, disability, ill health, loss, conflict or estrangement. I don’t want to cheapen this with the saying, “be kind, everyone is fighting some kind of battle”, but have we ever really thought about what that really means?

A number of people have lessened the challenge that they are facing because it can’t be worse than my challenge. Cancer wins every time right? No way. I know some challenges that people face and I’lll take cancer. Honestly. So please, don’t feel sorry for me. I want to share my thoughts with you because I want you to know that we can gain strength from each other. Having said all that, I’d be happy to hand my challenge right back hahaha Where’s my #livingmybestlife? It did also appear that some people were showing off their good health too much sometimes. But yeah, Regina Brett got it right when she said, "If we threw our problems in a pile and saw everyone else's, we'd grab ours back". I'll take mine. You must take yours. 

I'm an office fan and I thought of this scene. I think David was trying to quote Brett. 

(NB: You will need to click on "View Web Version" at the bottom of the post to view the video.)

I also acknowledge that the challenges that we face are meant to help us to help those around us. I love the stories of people who overcome adversity and then put themselves right back there to pull others up. 

So today, I draw strength from God foremost. I draw strength from those who I have known and from those who walk with me now. I also draw strength in knowing I have a future and a purpose. 

And so that nothing is a waste, I sincerely pray that you may draw some strength from me xx

MEDICAL REGIME (First line of treatment)
Zolodex: A monthly injection to stop ovaries from functioning
Denosumab: A monthly injection to strengthen bones
Kisquali: Oral chemo
Femara: Aromatase inhibitor 

I WANT TO BELIEVE

I read “Fitzherbert Frog loses his voice” so many times to my children. I had just about memorised the story and it’s likely that I enjoyed telling the story more than they enjoyed hearing it. All those years ago, reading that story, I never imagined that one day I would have something in common with the fluoro green frog. Just like him though, I eventually found my voice. 

I took a quick, deep breath and yelled, “Scully!” from an upper level of Indooroopilly Shopping Centre. It was 1995 (I think) and I stood alongside hundreds of X-Files fans wanting a glimpse of Scu…I mean…Gillian Anderson. The blurry photo of a tiny Anderson stood as my evidence for the encounter. Please, I want to emphasise, I’m not the person who lauds movie stars but, this show, X-Files is the exception.

X-Files has, and this is why we should be careful what our kids watch, made a significant impact on my thinking. Thinking that has carried into adulthood.  As a teen viewer, I very quickly decided that I could relate to the “Trust No One”, “I want to Believe” phrases and yeah, for sure, the government was an establishment to be questioned. Side note - I had a great childhood and I wasn’t bullied at school. It was just that the storylines in this cult show really exposed some truths. Well, I believed them to be truths. The result? I learned to love a good conspiracy. 

I found particular episodes so intriguing that I would spend time at the local library (no internet back then) looking for further information. So much so, that in my Computer Studies class, I demonstrated my skill at excel spreadsheets (an assignment task) to lay out UFO sightings and related info. I just gobbled this stuff up, I loved it. What if there were monsters in the sewers of New York, crop circles in the countryside of England, government departments deploying men wearing all black, erasing memories and alien abductions were for real? 

I didn’t have anyone to share this information with who didn’t think I was a little weird. But, so many times, I was conflicted. How could one even contemplate such things having been brought up in a home with the sacred Christian text at the centre? I believe that Jesus died on the cross and rose again so that I may have eternal life, and still do, but how would I reconcile this? Perhaps only one truth could exist? Yes, seriously, I did believe that there were truths to the sci-fi classic. Again, this was something that I was interested in exploring but it was a weird topic that others weren’t interested in. So, I kept these thoughts to myself. 

In 2011, when I was diagnosed with breast cancer I had already formed strong opinions on big Pharma, thanks to the influence of my fav TV show. Chemo was one “hellova drug”. It was founded upon chemicals used against enemies in war. Why on earth would I have this injected into my blood stream, willingly? I was so conflicted. My conspiracy theories rose to the surface influencing, heavily, my decision on treatment for the disease. Do I take the poison? There was something else to consider… Couldn’t the God who created the universe just heal me miraculously? 

Well, truth is, I didn’t get a miracle. And, after investigating alternatives, I went with the mainstream recommendation - cut, poison and burn i.e. surgery, chemo and radiation. Having discarded the food pyramid and choosing to eat whole foods I found that to be a way to have some control in this seemingly out-of-my-control situation. The poison, which I so reluctantly took, did its job. I was cancer free or some might say, in remission. I had to admit that big Pharma did as it had promised. So was I wrong to have questioned them and have bought into the conspiracies? I can say that I did confirm, for myself, my theory that eating a whole food diet was the best way to heal. Before, during and after I found that my faith had indeed helped me to get though. I thanked God for strength and for giving me so many blessings along the way. I yelled these truths to whoever would listen, in the form of a blog, “Out Came the Sunshine”.  Chemo could be done, healthy eating is the way to go and believing the former two doesn’t mean that you don’t believe in God. 

Nine years later however, August 2019, I lost my voice. I was diagnosed with breast cancer again. 

So, big phama didn’t do it’s job after all. Eating healthy also seemed to have failed me. I still had my faith. Some might call me crazy but I wasn’t about to start blaming God or anything. 

This time it was not in my breast. It was in my bones, too many to require itemisation. It was in my liver. It was in my lung. I stopped working a job that I gained so much joy in. The house renovations were cancelled. I was unable to run my house. Being a wife and mother came in equal second place to the disease. I sat at home. I tried really hard to make sense of the cancer coming back. I had so many questions. Why was this happening? What am I supposed to learn? How can I be a productive citizen at this time? What’s my purpose? What had I done to bring this upon myself? Honestly though, I just wanted it to be over - I didn’t care how. 

I tried to access my old blog, thinking that I’d blog my experiences again, like I had all those years ago. I found it so helpful and I remember my readers did too. But, I couldn’t work out how to access the site. I created a new one, using a different platform and titled it, “I Choose Yellow”. I took my oldest daughter on a walk, camera in hand, to capture something yellow. This blog was going to document how positive I was despite the circumstance. It was like I had found purpose - my voice was under a rock and I was about to get it back. But my voice wasn’t there. I couldn’t lie. I wasn’t feeling positive. I was bending and bowing with the wind as it tossed me from thoughts of death to life, back and forth. I socialised when I felt reasonable and those around me commented on how positive I was. Truth is, it’s not how I felt on the inside. It’s easy to be positive when you’re feeling ok; quite a different thing when you're in pain or feeling yuck. I just couldn’t think of anything to write. Nothing. What’s more, there were things about this recent diagnosis and treatment that I didn’t want anyone to know. And, my rule of writing a blog is that I would be honest. This time I couldn’t be honest. I didn’t want to share it all. My voice was no where to be found. 

Last time, cancer was a physical battle. This time, it’s a mental one. How do you explain that?

Well, on Aprll 9, 2021, just days away from starting IV chemo, I found my voice. So, here I am. It’s day 1 of IV chemo. I’m ready to talk. (And, somehow, I managed to get my old blog alive again.)