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.) 

The Chemo Lounge: Round 2 of 4

I arrived at the hospital in time for my blood test at 12pm. Before every treatment your blood is checked to be sure that your body is up for the onslaught. The results are marked "Urgent" so that by the time I met with the oncologist at 1.30pm he was satisfied for the treatment to go ahead. I mentioned the banging headache I had for a day after my first dose of chemo. He believed it to be a side effect of Zofran - an anti-nausea and vomiting medication. He immediately recommended that I take Pramin and Dexamethasone instead. And of course, only take Zofran if I felt the nausea coming on. I was so relived. I have been told the whole way that no one needs to be a hero. If something is not right or there are any unpleasant side effects that all I needed to do was to make a phone call. So true. The doctors really want to make the chemo ride as endurable as it can be. Great doctors. He gave me some antibiotics for the lady-problem I had last time! Yeah! So, should that reoccur I felt very happy that I would be able to manage it on my own. I also mentioned to the doctor that both my children were unwell. I was concerned as to how I was going to manage them and also avoid catching their bug. He replied that if I didn't "bathe in their mucous" that I would be ok. Easy. It was more the germs in my own body that were of concern.

I returned to the clinic, which wasn't as full as previous visits, and waited to be called into "Day Care". I was as much prepared as I could be. How do you prepare for chemo? Well, there are actually things you can do. For starters, the most difficult part of the session is the insertion of the cannula. I learned, after my first round, that if you are warm and have had loads of water your veins are easier to find. I was warm and full of water. The nurse even complimented me on my "plump" veins. Unfortunately, my veins were wiggly (a medical term?) so it ended up taking three goes before the cannula was in and good enough to aid in the gift of chemo to my healthy body.

The third week in the cycle (last week), I really felt terrific. So in that regard, I also believed that I had done the best I could in getting my health up so as to be in the best position to receive the damaging drugs. Yesterday, I had taken my dexamethasone, chemo preparation drugs, so I was set.

Oh, I nearly, forgot about my children. My sick children. I reluctantly handed the baton onto my babysitter knowing full well that sick children were more of a challenge. They were in capable hands, of course, so there really was no need to worry. My chemo buddy drove me in and before long I was greeted by my unofficial breast cancer support group. Words cannot describe what it means to share all the experiences with others who are going through it too. Lots of thanks to those that helped in anyway yesterday! There is no way we are meant to do life, whether good or bad, alone!

I was called in. My turn. I had a faint spell when the first cannula failed. And, when the nurse brought in a wet blanket (yes, not a wet cloth, a blanket), to put on my head, I felt so stupid. Always with the drama.

Once the cannula was in (third time lucky), it was simply a matter of being patient as the drugs slowly entered my system. I know I talked my head off to my chemo support buddy; I do that when I'm nervous. So, I was very surprised when she offered to do it again. Seriously.

As the women sit in "Day Care" they chat, laugh and smile warmly at each other. It's incredible. Aren't cancer patients meant to be down, gaunt and miserable? So much can be said about shared adversity. But, I'll leave that for another entry.

At 5.45pm, my last bag was taken down. Another treatment was over. I'm halfway! Before I left I was given my drugs.

There was something new, in addition to my four lots of medication. A needle. The nurse asked me whether I would give it to myself! Was she for real? The needle was to be given exactly 24 hours after the chemo finished, 5.45pm. tomorrow. I have a few nurse connections so that wasn't going to be a problem. The problem lay in the fact that I had heard that the needle, which activates white blood cell production in your bones (which drop to dangerously low levels), can cause nasty aches and pains. No! Me and Pain are not friends. There is no compromise in that relationship. So, I'll let you know how that all goes...

When I arrived home, feeling pretty good, I was greeted by a very sick child number two. Child number two wasn't eating, smiling or interacting; traits that come so easy to this little bundle of joy. A trip to the doctor was in order. Antibiotics were prescribed and received well. However, I guessed that it was not going to be an easy night. It looked as though there was going to be a competition for who was going to be the most sick and miserable human in our household. Going from the last round of chemo, I had a strong feeling that it wasn't going to be me.

Wig #1 and Chemo #2

It's funny (not ha ha) how you can do the same thing day in and day out and assume that it will be the same in a month or a year to come. As I gathered my goods at the supermarket this afternoon, I was struck by the idea that I would never have imagined that in June of 2011 I would be purchasing gluten-free crackers (a treat during chemo) whilst wearing a wig.

Remember how I said that I wasn't self-conscious of my new hair do? Well, I was totally self-conscious wearing a wig. Everytime someone looked at me I felt myself get smaller. Had my wig fallen off? Did it look ridiculous? Had the hair fallen out the wig? Was is sitting crooked? Did the hairline look odd? Had the wig slipped back and away from my forehead? How many questions can one ask one's self in five seconds? Lots apparently. I tugged and combed my fingers through my hair when I thought that no one was looking. Was I going to get used to this?

Admittedly, I was excited when I logged onto the auction site to buy a few wigs.

If you ever need a wig, look on-line for sure. You can buy brand new wigs and they are a whole lot cheaper than the shops here. Apologies to the Australian Retail Association.

Anyway, when they arrived and I put them on, I wasn't too convinced they suited. But that's it. I don't want to take the whole wig thing too serious. I can have fun with it. Right? Well, my "everyday wig" is short and not too crazy. My other two, well, they represent my adventurous side. Yes, I do have one...

My adventurous side, at the moment however, is being smashed by my "Oh-no-I'm-having-chemo-tomorrow-and-now-I-know-what-to-expect-it's-freaking-me-out!" side. I really did think that I would be so experienced (even with just one treatment) that my second session would be no big deal. Yeah, right. I am anxious. To cry, panic and react to the drugs again would not be good. Then again, it could be worse...It's best not to think about it, I reckon. So, I will go to my happy place. It's nice there :)

Just to make life more interesting, both child one and two are sick! The husband got up for them both during the night. Thanks! Child one had a fever that was so high that she was actually delirious! She was rambling on about strange things. It was scary. I have never seen anything like it in real life. I thought that only people dying of typhoid, in movies, got that ill. I refrained from dabbing her head with a cloth moistened by being dipped in a basin beside the bed; saw that in the movies too. A dose of modern medicine brought the temperature down. I am keeping up the medicine and very keen for the runny nose, coughing and sad faces to leave our home.

Tomorrow's a big day for the whole family. I have my support person and babysitter arranged. I'm ready on the outside. But on the inside? Mmm...not sure about that.

The Chemo Lounge: Round 1 of 4

I waited anxiously in the breast clinic that was full of women much older than me. There was a young woman, surely in her early twenties, who waited with her mother. Again, I was reminded of how fortunate I was to be having this now, rather then earlier.

Before any action was taken towards getting the cancer out, I was offered to be able to have some eggs frozen. For us, the answer was an easy, no thanks. We were very content with our two children. We got what we wanted. And, we are so appreciative for that!

Once my blood results were received I met with the doctor. It was all systems go! I returned to the waiting room to be called into, "Day Care".

My empty chair sat quietly. Actually, that chair has been waiting for me for a very long time. I never knew it was though. How strange. Both good and bad things await our arrival. That chair. It would hold me for a few hours. I snuggled in and immediately a steady flow of tears came. This was it. I have cancer! The nurse assigned to me was so sweet. She reassured me and got ready to insert the cannula. She wasn't so lucky the first time though and neither was I.

Up and until this point I had had a number of dizzy spells. But, what seemed to be something so silly became very real for me at that moment. Perhaps, lying dormant all these years was, Alicia with anxiety issues. I felt faint. My hands tensed up and so did my toes. I couldn't move! I was literally frozen. When I saw my hands and toes I could feel myself sinking further inwards. Pins and needles ran through my chest and belly constricting me. I tried desperately to hold onto the reassurances of those beside me but it was no use. A friend, siting opposite me, had a nurse pass her iPod to me, it was playing relaxation music. Meanwhile, I nurse rushed for a portable DVD player. Eventually my body began to undo its tangled mess. My episode passed.

I've thought a great deal about that moment. I would never have though that I would suffer from an anxiety attack. I really can't explain it. Had I not dealt with the diagnosis appropriately? Could it be that I have faked a confidence and masked anxiety all of these years? Was it just a one-off flip-out? I don't know. Of course, that wasn't the end of this chemo virgin's drama.

Once my veins were flushed with saline water the chemo drug, taxotere was sent in. Within five minutes, I began to experience a hot flush and a shortness of breath. Don't worry, it's just a reaction to the drugs. The taxotere was swapped for saline and then I was given taxotere at a lesser dose. After fifteen minutes, it was decided that I could be given the dose as required. An hour later, taxotere was replaced with cyclophosphamide. That was my unique combination of drugs.

The rest of the sitting went smoothly. I watched other patients (including one man) receiving their chemo and was amazed to see so many smiling faces. A box of chocolates were passed around and a real sense of camaraderie enclosed us all.

I made a friend (she was the one who leant me her iPod) at a Chemo Awareness Session, held at the hospital. As it turns out, we will share our chemo time together. And what's more she lives in my suburb! Are you totally getting the feeling, just like me, that the right people are just turning up at the right time? We have been keeping in touch, sharing our progress and encouraging each other. It has been great!

The husband and I walked out of the hospital excited that one session was done and dusted. We were keen to see our children, hungry and nervous to know what lay ahead in the 48 hours proceeding treatment.