My Activity Tracking
My target 100kms
My cancer journey
In 2019 at just 25 years of age I was diagnosed with stage IV Ovarian Cancer. Over the past (almost) 12 months I have endured multiple surgeries and chemotherapy, and unfortunately have more to come. A very important part of my dealing with this difficult diagnosis and revovering from each surgery/round of chemo has been keeping my body and active and moving.
This year I am taking part in The March Charge with Cancer Council and telling cancer where to go!
Research sees more people than ever survive but we’ve still a way to go, particularly with Ovarian Cancer. Ovarian Cancer often presents as vague and minimal symptoms, meaning that many people aren’t diagnosed until advanced stages. We rely on new research and treatment to be developed to work towards managing symptoms and finding a cure for advanced stage cancer.
It’s going to be a challenge (my next surgery is scheduled in March), but I want to raise awareness while proving that people with cancer can still thrive and participate in physical activities.
Please sponsor me today to support my challenge and join me in telling cancer where to go! Your donation will help our local Cancer Council support those affected right now and fund world changing research to help more people survive. Thank you for your support
9. Doing the rounds
It would be make sense for the content of this next post to be all about my first few days in recovery on the ward.
They were really hard, picking myself up after the epidural was stopped and starting to cough (yes even coughing was painful), sit up, sit up out of bed and then eventually take a few steps. It was such a mental rollercoaster for me and those who are closest to me. The few people who I allowed in to visit me in hospital have basically all said that seeing me in there was when it really hit them for the first time that I was sick.
It is such an important part of my story, but there is something more important that needs to be said. I would like to dedicate this post to the exceptional care during my stay in hospital. This reaches out to many floors and people including; pre operation, operation, emergency department, intensive care unit, critical care unit, recovery, the regular ward and my ongoing healthcare team.
I spent 8 days in hospital after my surgery.
Therefore I spent the vast majority of this time with healthcare staff, mainly nurses. I was treated with nothing but respect and care. If I was having a bad day, they would take the time to try cheer me up. If I was having a really bad day, they would support me until I was ready to sit up out of bed. If I was having a good day, they would celebrate the win with me. I felt like I had company during that time when I was recovering, which helped to keep my spirits up.
One of my favourite things is when I was chatting with a nurse one morning, a middle aged lady who was a regular and became like my “hospital mum.” I was telling her how I love wearing bright coloured clothes and didn’t feel like myself in the dreary white hospital gown, it made me feel ‘sicker.’ The next morning when I was getting ready to have a shower she bought in some towels and face washers.. and a bright purple hospital gown. She said I looked washed out in the white gown and she wanted to bring me something to help me feel like me. A small act of kindness made my day.
After being discharged, I would continue to have appointments as an outpatient on that ward over the next few weeks. Every time I was there I would be greeted with big beaming faces or words of encouragement about how well I was looking or far I was walking. You could tell they just really cared.
In the next few days, weeks, months and possibly to the end of 2020, our healthcare system and workers are going to be stretched to go above and beyond to look after members of the community.
Maybe you hear of it on a Facebook page.
Maybe it’s a family member.
Maybe it’s you.
Be kind to the healthcare workers, these exceptional people who are carrying us through these unchartered waters, and are fighting COVID19 on the frontline.
Respect social distancing. Respect hand hygiene.
We all need to be doing our part so they can do theirs.
8. "You are having a heart attack"
(Note: this isn’t intended to replace any medical information about heart attacks. If you are concerned or want more information about your health please speak to your GP and check out resources like The Heart Foundation).
I was exhausted, groggy and keen to settle in for a decent night sleep; helped along by my new friends epidural and endone. It would be a restful night and I would wake up ready to tackle the next day.
Or so I thought.
So I left another cliffhanger.
I didn’t mean to leave it for so long, but I’ve had a difficult time getting back into the swing of writing after my most recent surgery.
The post title isn’t an attention grab or a cheeky play on words. Although I might need to start doing that to stand out, with all the socials flooded with coronavirus. I haven’t stretched the truth. This all happened. I’ve tried to remember all the medico stuff as best I can, but its difficult to remember.
A few hours had passed since my visitors had left for the evening. Or it felt like it. Time does something funny when you are on opioids.
The clearest thing I remember being very cold. Not totally unusual in a hospital, where the blankets aren’t exactly the most heat effective. I asked for another, and another and another. It started to get heavy when I was buried under about 7 blankets, my teeth still chattering away.
Someone from the anaesthetic team came around to check in, given the length of the surgery (8.5 hours). After a discussion with the nurse they hooked me up to an electrocardiogram (ECG) via some electrodes. This is a machine that measures the electrical activity of the heart and basically checks for any abnormalities.
5 minutes... all good
10 minutes... all good
15 minutes... uh oh
I could tell something was wrong by the way they huddled over the page of results, their eyes darting back and forth between the page and my hospital bed. They started asking me how I was feeling and speaking very quickly.
I can’t be sure how much time had passed, but before long there was a team of 15 people huddled around my little bed having a humming conversation about what was happening. Someone kept asking me if it hurt anywhere or if I had pins and needles, and was offering me a green stick.
I was so exhausted and in a sort of daze I felt like I couldn’t talk, let alone string together a coherent sentence to ask what was happening. But it turns out I didn’t need to.
One of the doctors came right up close to my face, looked me right in the eye and said “we think you are having a heart attack.”
It was very surreal, I felt like I was watching the event from outside of my body. My thoughts all started running into a blur;
How could I possibly be having a heart attack? Surely not.
Is this really what a heart attack feels like?
No this isn’t happening.
I didn’t just go through a massive 8 hour surgery to have a heart attack.
Feeling rather helpless in my hospital beds with wires going in every direction, I thought back to a quote I had written down a few weeks before related to my cancer. I started repeating the words over and over in my head.
Not this way, not this time.
It is not my time to die.
Not this way, not this time.
The plan was to transfer me to the Critical Care Unit at the neighbouring hospital, held up only by a lack of bed. What seemed like an agonisingly long wait was finally over and I was transferred across. I have an idea what time it was now, because my mum received a call from the hospital at about 3.30am with an update and to come in ASAP. People often tell me how “brave” and “strong” I am, but don’t give a nod to the people I’m closest with. I don’t know how I would have reacted if I was the one on the receiving end of that phone call. Definitely in the vicinity of scared shitless.
The next thing I remember is being wheeled off to complete a test called an angiogram. An angiogram is where they insert a catheter into an artery (mine was in my arm) and push it through to your heart to check for any narrowed/blocked blood vessels.
I was to lie on a hard wooden like surface. I would then be moved into position (it literally felt like my arms were twisted and tangled in different directions), where I would need to remain very still for around 50 minutes. They would also take a scan of my heart while I was there. They said they were going to need to stop (or block - not sure of the right term here) my epidural. So I would have no pain control.
Everything was moving so quick but that didn’t stop me from thinking - UMM less than 24 hours ago you cut me open and played around with my insides; taking out a big chunk of cancer, quite a few organs and bits of bowel thats left me with a 26cm scar and you want to stop all my pain control??
I was petrified. But that was very soon replaced with an intense amount of pain. More pain than I have ever, ever experienced in my entire life. The type of pain you could imagine Harry Potter has when Voldemort touched his scar (x 100). The type of pain you would never wish upon your worst enemy, or even the COVID19 panic hoarders. I think that’s why a lot of the details from that night are hazy, my brain has buried them so deep to protect myself. I was whimpering for the entire 50 minutes (eternity), on the verge of crying out in pain. I had to chunk the time to keep sane, telling myself just 5 minutes more... just 5 minutes more...
The next thing I can remember is being back in the Critical Care room, surrounded by Ryan, my mum and grandma. Shout out to grandma for taking the photo that accompanies this post. They weren’t able to turn back on/unblock/restart/you-know-what-I-mean the epidural. I quickly became very well acquainted with my little green pain button, which let me get 5-10 minute bursts of sleep before I needed to press it again.
Quite anticlimactic, I would find out a few (painful) days later that it was actually not a heart attack. They explained it like my abdomen had experienced major trauma with the surgery, which then caused a chain reaction where nerves were activated and the electrical activity of my heart ‘mirrored’ a heart attack.
So basically I had a fake heart attack.
Makes for a good story (I hope).
7. The great debulking
At the end of the 3 rounds I felt like I had been doing everything possible to make the chemotherapy a success. It was finally time to go in and find out how well it had worked.
I purposely left that cliffhanger at the end of my post about chemotherapy to make you think about if it was successful or not. Did you have a guess? What things did you factor in?
Here are some of the things I thought about:
- my age: young
- level of fitness: med-high
- ability to manage side effects:very good
- between rounds: feeling fairly normal
- ascites (fluid/bloating): hadn’t returned
- CA125 blood tests: leveled out (weren’t increasing)
- capacity to drink wine: 10/10
These things all put me in good stead, and point towards chemotherapy being successful.
Unfortunately, cancer doesn’t play by the rules and didn’t give a f**k about any of those things. Three seperate professionals gave me a different interpretation of my scan results which were:
- the cancer has grown slightly
- the cancer is stable
- the cancer has shrunk slightly.
I was so confused. But the take home message was there was no major improvement, if any at all. But they wouldn’t actually know for sure until they opened me up.
I thought I was doing everything right and even starting to feel well. I thought that I was finally getting back in sync with my body, after not understanding all of the warning signs for so long. It was like I had let myself down, again. I felt like I had been working so hard, just to find out that in the end this really is just a game of chance. A game that I was losing.
This news was devastating, to say the least.
The purpose of having chemo before surgery was to try and shrink the tumour first. Remember the tumour was the size of a brick, and the bigger the tumour the more extensive the surgery.
So I had two weeks to prepare for the biggest surgery of my life, which could involve; debulking (remove as much cancer as they can), total hysterectomy, oophorectomy, removal of my peritoneum (or omentum - always get them confused) and part of my bowel. There would be someone there at the ready to take any egg tissue they could salvage, but this chance was so slim I didn’t even count it. There were lots of + and - on my consent form, because they wouldn’t be sure of what they needed to do until I was open on the table. I was walking into a big unknown.
I learned that sitting up, getting out of bed and walking even just a few steps was going to be difficult. I was not allowed to cook (Ryan lost his main chef). I knew that I would be unable to drive for 6-8 weeks. I would have a very large scar down the middle of my abdomen. I was going to be in pain.
July 31st 2019 came around quickly.
Before I could really process that I was in the theatre room, receiving an epidural and about to be put to sleep, I was waking up again on the other side.
When I woke up, I could tell straight away the surgery hadn’t gone exactly to plan. I remember looking down and I just cried and cried.
When I had downgraded from hysterical to soft sob, I was able to see my family. Ryan, my mum and Ryan’s parents had stayed either in or around the hospital for the entire duration of my surgery, which ended up being roughly 8.5 hours. It was a relief to see some familiar faces, and I think I cried some more.
It was then explained to me that the surgery was actually considered a relative success and they were able to remove around 95% of the cancer, along with many of the affected organs I listed above. There was some pieces that they needed to leave in because they were difficult to remove and I had been under for a long time. As I predicted, no egg tissue was able to be salvaged. They did send off the tumour tissue to be biopsied, and I would find out a few weeks later that I actually had low grade serous ovarian cancer. This explained why the chemo wasn’t as effective.
I was exhausted, groggy and keen to settle in for a decent night sleep; helped along by my new friends epidural and endone. It would be a restful night and I would wake up ready to tackle the next day.
Or so I thought.
6. Brittany 2006
OCould you guess today’s post from the Facebook hint?
Today I’ve written about working up to the decision to shave my head. It would have been easy to cover this off when I spoke about chemotherapy, but I thought this deserved its own post because being a young woman in my mid twenties I was very attached to my hair, yet my experience was totally not what I expected. Then, because I got a little bit curious and a little bit lazy, l decided to interview Ryan for when we actually shaved my head and tell it from his point of view.
PRE BRITTANY 2007
Before my second round of chemo, I was gifted a weekend away with some girlfriends by Ryan’s family. This was the perfect opportunity to let my hair down (figuratively, it was actually coming out in clumps by this stage) and feel a bit normal and relaxed for a few days. We had way too much red wine, a beautiful lunch at a winery and I was also treated to a massage/facial #girlsjustwannahavefun.
Because this weekend fell on roughly day 18 post chemo, it also happened to coincide with when my hair really started to fall out.
With cold capping the idea is that you wash your hair very sparingly (less than once a week) and that you hardly touch it, including brushing. Cutting out brushing was fine for me, I never brushed my hair anyway (my hair would frizz if it was in the same room as a hairbrush), but not washing it was hard. This also meant that large chunks of hair was falling out while I was sleeping, matting into my hair and then had to be pulled out by me in the morning. This was probably the most traumatising part overall.
I kept going back and forth with being ok with losing my hair and falling into an inconsolable heap. I would look at old photos of my self with my hair looking nice and feeling like I was going to look like an ogre. I very much hid behind my hair because I have never much liked my face. I loved how long it had gotten and even how thick it was. Reflecting back now I can safely say that I was very much still concealing my diagnosis from the world and it is a lot harder to hide cancer from people when you have no hair.
So back to the weekend away. I had been pulling out bin bags full of hair, my scalp constantly felt like it had pins and needles and my hair was starting to become more difficult to manage than it was worth. I had made the decision that when I got home to the bungalow, I would ask Ryan to shave my head.
Note: I knew I would forget significant details along the way. The bungalow is where Ryan and I lived together for a large chunk of 2019, and where Ryan would continue to live when I went on a ‘chemo hiatus’ to my grandmas once every three weeks. The bungalow is owned by Ryan’s lovely Aunty Anne, another important person in our village. Not only an all round awesome human, but also a very understanding landlord when Nala would dig up the grass or garden. For the tenth time [insert angel face]
Ryan: When Bec first asked me what I remembered about when her hair started falling out it was hard, because it feels like that all happened so long ago. But thinking back it happened slowly then all at once. I would find clumps in the bin, the toilet, the shower.. that’s when it became real for me that she had cancer.
I remember thinking losing her hair was going to hit her like a tonne of bricks and I had no idea what her reaction was going to be.
She came back from Echuca and wanted to shave it straightaway. I told her we needed a certain type of clippers and that we would probably have to wait until tomorrow. She agreed for about a whole 5 minutes before saying it had to be done right then and there. So with my beard trimmers and a set of gardening shears we got to it, giving Bec some grouse cuts along the way.
All I remember is being happy. Happy that we could make it fun and silly, happy that Bec reacted in a positive way. Happy we took the power from cancer.
When it was all shaved and done, there were no sad tears, just smiling. It was like it wasn’t a sad thing at all.
After Bec had a shower, she suggested we go out for dinner to celebrate. After making sure she was 100% out going, I agreed. I didn’t know how people were going to react, it was like I thought everyone was going to be staring at Bec. But Bec just sat there, in her hat, eating her dumplings like nothing had happened and everything was completely normal.
I thought it would be more emotional. But it wasn’t, it was just us.
BRITTANY 2007 AFTERMATH
Back to me. So just how did I really feel after my head was shaved?
I felt pretty bloody good to be honest. My scalp was no longer itchy or felt like it had pins and needles all over it. I didn’t have to worry about clumps of hair falling out while I was walking in the street. I didn’t have to worry about it at all actually, I could just get up and go (I am the worst morning person so this has been a game changer).
I got used to bald life pretty quickly. I did have a few awkward moments where I wasn’t sure how people would react, usually at large events. But with the right supports around me these easily faded into nothing and my confidence grew. Maybe the transition was easier because it turns out I have a pretty nicely shaped head, as about 50 different people told me (if this was you and you just didn’t know what else to say, don’t burst my bubble please). Or maybe partially because living in the Northern suburbs of Melbourne, it helped me to blend in more with my hipster neighbours.
I was lucky enough to have a beautiful group of friends who rallied together to gift me with some money to buy a wig. I was so excited to go and try them on with mum, and feel more like myself again. I’ve actually tried to wear the wig so many times, but it just feels so alien, so not me and so heavy/hot (not menopause friendly). It’s certainly not what I expected to feel like.
Instead of wigs I’ve experimented a lot with hats and scarves. If you are looking for a scarf to gift someone an excellent choice is The Bravery Co. Part of the profits is donated back into cancer research and they have beautiful colours, are silky soft and come with easy to follow turban tying tutorials. She also has a super inspirational story to tell, currently fighting cancer for the third time. PS I’m not a cancer influencer or anything now, the scarves are just awesome. I have been gifted them by friends and have now gifted them myself to another young person I know with cancer.
Overall I felt liberated. I had made the choice to shave my head before cancer made it for me. It was like I had taken a step closer to accepting myself, and on a subconscious level my diagnosis. I didn’t have my hair to hide behind anymore, so I have since gotten to know my face a lot better.
In saying that bald life has not always been easy. As a regular fake tanner I now had to choose between either 1) tanning my whole head or 2) up to my hair line, leaving half my head stark white. Yes I tried both, weirdly enough number 2 was the better option. When I would go out, I would feel so un-feminine and like my clothes didn’t make me look like me anymore. And of course, MELBOURNE IS COLD.
But if I’m honest, the hardest thing of all was going without eyelashes and eyebrows. I was lucky in the end I only lost them completely for about a month. It took some time for them to grow back fully, but there was enough there for me to work with. Or for @morganharrisbeauty to work her magic and tattoo me on some new brows. So I feel like I didn’t ‘suffer’ through this period enough to really go in to detail. To all my sisters who currently are going through this or went through this for a long period of time, is it damn hard, and you are all warrriors.
Some people have told me they are reading these posts for advice on how to approach/support different people who have cancer. I really want to reiterate that just because I am writing about it does not mean my opinion is how everyone feels. But it is something I will try to incorporate more into my posts because sometimes things are just such common sense, and I don’t know how people mucked it up so bad.
So I’ll wrap this one up with this important piece of advice related to all things hair: If you know someone has cancer and they have significantly less hair than they did the last time you saw them (eg BALD), don’t ask them when they cut their hair, like they have just gone to the hairdressers for a trim. It’s unfortunate that I feel the need to spell that out, but I would hate for it to happen to someone else.
Some details are a little hazy during active chemotherapy and a few months after, largely due to chemo brain being a real thing and partially due to something I think is very similar to PTSD.
This part of my treatment was all very straightforward. I was to have two different types of chemotherapy called paclitaxel and carboplatin. Not-so-fondly known within Ovarian Cancer circles as ‘taxol’ and ‘carbo.’ The plan was to have 6 rounds. Once every 3 weeks, for 3 rounds then a big surgery and finishing off with the remaining 3 rounds.
I definitely found my groove during chemo. I would go as far as saying I was “good” at chemo. There was a clear plan and expectations. I knew what blood tests and I needed to get and what CA125 level we were aiming for. I researched what I needed and made myself a ‘chemo kit’ with all the essentials. I tracked what side effects happened and when, then took these to the team and got specific ideas on what could help ease them. I had a diary of all of my food to ensure I was getting enough of the right nutrients into my body. I built up to exercising as quickly as my body was able to, because that was physically and mentally important to me and research pointed towards a quicker recovery the more active you are. I focused on getting through each day, then each week, and I came to know what to expect. One foot in front of the other basically, never looking too far ahead. I think this was an ‘easier’ part of the journey for me because I felt like I was very much in control. I was also feeling significantly better after having all the fluid drained from my abdominal cavity.
I am grateful that I had lots of people put their hands up to take me to my chemo sessions. I knew it was going to be important for it to be someone who was fairly comfortable with hospitals, someone I could sit in silence with and someone who could deal with running around after me for the 6-8 hours we would be there.
So in the end I asked three very special people that supported me at a session each. Thanks to my Mum, Ryan and beautiful friend Tessa for being my chemo people.
Because the first three rounds are such a blur now and all over pretty similar, I’m just going to talk about the first one. I can’t guarantee I haven’t accidentally pulled information from another round in because, you know, the memory thing. There were plenty of side effects to learn, but the major one I already knew of was hair loss. If you know me personally you’ll know I have always had very thick and unruly curly hair. I was obsessed with growing it longer so it would become more manageable. I used to measure it with a ruler when I was in high school. Over the past few years my hair and I had come to a mutual agreement where it had grown a fair length, behaved most of the time and I could tame it to look socially acceptable. So I was very attached to my hair give the time-growth investment and was prepared to try anything to save it.
My oncologist offered me something called cold capping which had an approximately 50% success rate of me keeping some of my hair. The catch (there is always a catch with cancer, I hope thats been clear given we are nearly halfway through this series) was I would need to delay treatment for a week for the machine to be available. I declined because with my patience basically in the negatives and I was ready to get going. So I was sent off on my way with a large brown paper bag of pre and post medicines and started to think about what I would look like bald over the weekend.
When I arrived on the Monday morning it turned out they actually had a cold capping machine available to use if I chose to. I’m the sort of person that will dwell on the ‘what ifs’ if I don’t try everything (ie I get FOMO) so decided to give it a crack. It basically involved wetting my hair and fixing a frozen hat as tightly to my scalp as possible, and then tightening it even further with straps (I’ll attach a photo). The idea is that it stops the chemo from reaching the hair growth cells. I had done some research about cold capping, so I didn’t expect it to be easy. But the first half an hour was one of the most excruciating things I had ever experienced. The only way I can describe it is if you imagine the worst brain freeze you ever had times a thousand, then add someone stabbing your head with pins all over. Times the pain by another thousand. For the remaining 6 hours, the pain subsided to a large dull ache. I only ended up cold capping once, I don’t know if I could knowingly put myself through that again for a 50% chance.
There was nothing really noteworthy or unusual about the actual chemo days or infusions. I’m not sure what I expected - that I might be able to feel the concoction running through my veins ready for some mighty battle with my cells. I mean, there was a metallic aftertaste when they would flush the cannula, but I had mints in my chemo kit prepared for that. I would have a few visitors from my wider allied health team, I was adequately entertained and distracted by my chemo person for 6-8 hours and then it was time to go home.
Recovering from each round went basically the same, and I fell into a familiar routine. I’m aware how lucky I am that my village totally rallied around me during this time. My grandma opened her home (because remember Ryan and I are totally between everywhere and nowhere with our living situation at this point). My Mum was basically available to me 24/7, which was important from not only a care point of view but for company. I’ve been a very independent person for a very long time, but sometimes you just want your mum. There were some days if I were alone, I would spiral. So we reduced this as much as possible. I was gifted more food and adult colouring books than I knew what to do with, and I was getting regular check ups from friends and family.
So for 9 weeks life was something like this:
- Felt pretty fine
- Walk around the block
- Walk to the shops if feeling extra adventurous
- Hungry 24/7 (thanks steroids). I craved tuna pasta, stewed apples and chicken schnitzels. Grandma made sure these foods were available around the clock. (Literally she started making extra because she knew I would wake up in the middle of the night and eat. Bless her. Unsure if I can blame it all on the steroids or my regular appetite just returning)
- I’ve got this, this is easy. I have conquered chemo!
- Feeling like a complete fool that was lulled into a false sense of security days 1-2.
- I’m sure I’ve aged 80 years
- My bones are on actual fire from the inside out. There is no comfortable position, ever. I can understand now why so many people have been offering me CBD oil
- Sleep deprived from getting up to pee every 2 hours
- My brain is foggy and some days I can’t concentrate enough to hold a conversation
- Nala wasn’t allowed at my grandmas house, so there was no one there to blame the farts on. Ryan and I would call these ‘chemo farts’ and they were lethal
- Chemo constipation is not your friend, ever. Note to self: remember to start taking laxatives before chemo next time
- Everything and everyone sucks. These two days of the first week were like being in a deep black hole where the was no light. Every negative thought hit me at once.
- Would have a breakdown at least once saying I can’t do this anymore
- Unfortunately these two days almost always coincided with the weekend, which I would go and stay with Ryan
- Emerge from black hole
- Forget how crappy the first week was. Get back into exercise routine including F45, 1000 steps, Pilates, walking etc
- Attend social functions, go away, get stuck into some work from home
- Have a few bad days that are overall outweighed by the good
Note: After writing this I remembered that after round 3 I became sick with a cold. Because my immune system was so depleted, this was the longest most sufferable cold I have ever had. To all you plebs stocking up for coronavirus - having access to endless amounts of pasta (thanks grandma) and adequate toilet paper made zero difference in my recovery. Leave it on the shelves rather than trying to extort some poor person who missed out on FB marketplace.
I really hope this summary helps people to understand that I have never ‘faked’ or ‘pretended’ to be ok. I just don’t live my life thinking about cancer every second of every day. That’s so important for people to get, particularly if you know a young person with cancer. There were plenty of times I wasn’t ok, and these posts are giving you the tiniest bits of insights into that. But for the most part if I was out, I was feeling good. And the more people treated me like I was normal, the more I felt it. That’s the best thing you can do for someone’s quality of life. We are not fragile, we will not break if we laugh or go out dancing or skull a goon sack with our friends (I’m looking at you Kasey!)
But I know this was another long post, so if you’ve skipped to the bottom to get the gist and only take one thing away, PLEASE do everything in your power to avoid having these conversations:
Person: Hiya Bec howsit going?
Bec: Good mate yourself?
Person: Yeah good, but how are you actually doing?
Bec: ... yeah good!
Person: No but seriously? [deep awkward stare into my soul]
Bec: [Slowly backs away...]
So at the end of the 3 rounds I felt like I had been doing everything in my power possible to make the chemotherapy a success. It was finally time to go in and find out how well it had worked.
4. The invisibility cloak
There was always going to be a Harry Potter reference coming, I thought I would get it out of the way early.
At the end of the last post I set myself up for a neat segway into chemotherapy. But I’m going to sidestep here and take some time to talk about what on earth was bouncing around my head during all this. Just a warning, we are about to dive off into the deep end here.
Please remember that these are just my experiences in response to cancer and no two people are the same. If you are concerned about someone’s mental health please reach out to them or a trusted person in their life. Beyond Blue has some excellent resources on how to start this conversation.
After the initial appointment in hospital my life completely stopped, and I mean totally stopped. I shut down and blocked everyone and everything out for about a week. I wrote a to do list (of course) and superstar Ryan jumped in and ticked them off one by one, firstly calling four of my closest girlfriends and then let my work know I was out of action indefinitely. None of those conversations were easy, so big snaps for Ryan. I tapped out of telling my closest friends so I didn’t have to watch the disbelief, shock and grief all over their faces when they found out. That would have really hurt me, and self preservation won out here.
The news quickly filtered out to close friends and family. People were under strict instructions that this was on a need to know basis, and I remember talking way too much about my “inner circle” and “outer circle” and didn’t want anyone else to know. I also didn’t want anyone contacting me in the week immediately after, so all well meaning messages of support were fielded by Ryan. You might be thinking, if you wanted things to be so private why are you pestering us with your social media posts promoting your story every 2 seconds:
a) Karen no one is making you read these. But obviously you are, so the good blog tips from Google must be working
b) I’m at a point now where I want to reach more people raising awareness and social media is an excellent platform to do that. I’ve also received multiple messages from close people about how they didn’t know some of what I’m writing about happened, so it’s also important for me to talk about what has happened for people that are “inner circle.” Lastly, it’s been a total mental journey to get to the point where it’s beneficial for me to talk about what has happened for me. I hope I can express some of how that shift in mindset happened throughout these posts (#selfdiscovery #newyearnewme #freshoutlook and all that)
So why was my isolation or ‘invisibility cloak’ so important for that first week? I allowed myself to have all the feels without having to worry about anyone else. I had time to grieve my life, past and future. I went through a vicious blame cycle, where I was just so furious at myself that I had missed the symptoms (I still revert to this sometimes). I thought about death. I tried to unpack “why me” more times than I can count. I was annoyed at the world, because this major thing had happened to me but it just kept on spinning...
I still have some periods of self isolation (not related to coronavirus, and we only buy one packet of toilet paper at a thankyou very much). Sometimes it’s important for me, or me and Ryan to just shut things out for a bit and have a few days to heal. My closest people understand and respect this, and patiently wait until I’m ready to resurface.
My decisions at the beginning were totally based around what was best for me and only me. My partner, family and friends weren’t on my radar. This might sound selfish, but I believe this approach has been the best thing for me and my mental health. A phrase I always use at work is that you can’t expect to help others if your glass is only half full. My glass was only half full for a long time, and I had to learn to be ok with that. I lost this part of my identity for awhile, because in both my personal and professional life I have always been a ‘helper.’
l had to say no (even to well meaning supporters), learn how to delegate and accept that I could unfortunately no longer be Ryan’s ‘go to’ person. This was a total shift in our relationship and a significant adjustment on Ryan’s behalf, he handled this (as with everything) like a total trooper.
When I was ready, first steps I took to removing my invisibility cloak was reading through the messages from friends and family. Words are very powerful to me and I have screenshotted every text and have a scrapbook of every card, note or scribble I’ve received along the way. I don’t think I have told that to the people who have written to me, reading your words really picks me up on the hard days. So thankyou.
Bit by bit I would start to reply and let a select number of people back in. By the time it came around to seeing people face to face, I could talk about what was happening without crying. I made it clear that pity was not going to fly with me, and that I was 100% still me and didn’t want special treatment. For every 10 people that respected and adopted this, there were 1 or 2 that did not. At first I was hurt and angry that people were either pretending like nothing was wrong, or treating me like I was about to drop dead at any moment. We have since mutually let each other go. My relationships have been forever changed, I am more select with who I invest my time in, and I am ok with that.
When people first find out about my diagnosis, they tend to throw around words like “brave” “inspirational” and “strong.” I didn’t identify with any of these things at all (I still don’t). For me, I had two clear choices emerging:
1) Continue to sit in self pity and feel overcome with negativity on a daily basis, and have no enjoyment out of anything
2) Make a conscious effort every day to approach the situation head on and choose to see the positives that every day brought. Begin to re engage with things that give me pleasure and start adjusting to this new way of life.
When I was ready, I went with choice 2. I feel that I was in a frame of mind to have a choice, and didn’t understand it at the time but not everyone can get to that frame of mind. For me it was an easy decision, although it has been difficult at times to follow through with. Don’t get me wrong, sitting in sadness and self pity certainly has its place. It was my safe place to let me feelings run their course and then a launching pad when I was ready to move on.
It feels appropriate to mention here that I don’t want to come across like it is easy, I work on my mindset every single day. There was a time after my biggest surgery when I wasn’t physically or mentally capable of making the choice to be positive, and fell into a depressive state for about 3 weeks. I have never experienced anything like that period of darkness in my whole life, and it has completely changed my approach and understanding mental illness for the better.
A light in the darkness for me is humour. Ryan and I often make very inappropriate jokes about cancer. For us, I think it takes away some of the ‘power’ that cancer seems to have. When we talk like this in front of other people you can literally see them squirm from being uncomfortable/shocked. A few times people have even said “you can’t say that!” Why not? It works for us. If you have ever been on the receiving end of this, you’ll notice we do absolutely nothing to make you comfortable #sorrynotsorry.
This post is way longer than I anticipated and I feel like I haven’t even begun to scratch the surface of what I wanted to express. I suppose there are so many complexities it’s difficult for words to capture.
Note: I feel like I’m having a dnm with myself, is this why people say keeping a diary is so therapeutic??
But seriously, I am proud of my approach and resilience during this time. I am forever grateful for my village, who continue to be my main source of encouragement. Together, we were able to get my mindset in the best possible place to start chemotherapy (yes mum, you are going to get a mention in this next one).
3. Welcome to limbo
I asked Ryan to proof my last post and his critique was it had no pictures. Just FYI I’m saving the pictures for post 6, titled Brittany 2007. Trust me, it‘s worth the wait.
an uncertain period of awaiting a decision or resolution; an intermediate state or condition.
I finished off the last post with finding out I might-maybe-but-probably-definitely-can’t-say-for-sure have cancer. Basically this meant I was firmly in a “period of waiting”, with a 99.99% chance of having a nasty looking cancer cancer and zero idea of the plan moving forward. This was so frustrating for me (hello fellow type A personalities) and something that I continue to struggle with about my treatment to this day.
Oh I should also give you some context and mention all this happened the weekend Ryan and I were meant to be moving in to the caravan on our property in Kinglake. We had planned to live there while we were building, just for 2 months or so until our shed was liveable. (Note: a year later neither the house or shed is finished, so this change in plan was actually a good thing).
We ended up setting up shop at my grandmas house, which would become a bit of a halfway home while I was going through treatment.
Anyway, I’m getting off track. The ping pong game in limbo had begun, and if someone was commentating it would have gone something like this:
Gynae = Gynaecological team
GI = GastroIntestinal team
- Gynae team makes the first move, swiftly passing patient off to GI
- Patient waits... waits... waits
- GI schedules a meeting, patient is the youngest person in the waiting room by about 50 years
- GI schedules a surgery but ooooo, it’s 2 weeks away
- Gynae lurking patiently on the sidelines here
- GI completes surgery, and in a not-so-shocking move has a 10 day wait for the results!
- Patient no longer looking 6 months pregnant because ascites have been removed. Also no longer throwing up all food, woohoo!
- Results are in. Definitely cancer but starting point is unclear, looks like GI might pass back to Gynae. Tumour is sizing in at 13cm x 9cm x 10cm (bloody big)
- No sign of movement, GI holds on for another week. More waiting for patient
- GI delivers devastating blow that if this is bowel cancer there is no active treatment options
- *Patient timeout for lots of crying*
- GI hints it could be Gynae origin, which has treatment options, this could be a (relative) win here for the patient
- Wait for it... looks like GI and Gynae are working together on this next one
- In a strange move, GI schedules appointment, to tell patient that they think they know what it is but they can’t provide any information
- GI promises swift movement to handover to Gynae for results, and patient to call back for an appointment if nothing is heard within a week
- Bold move from patient who calls the very next day
- Gynae swoops in here on the Thursday for the big finish and reports they are 99.9% sure patient has something called high grade ovarian cancer.
So I have finally been claimed by the Gynaecological team. It feels nice to have a place, and I’ll go as far as saying a sense of belonging. But I don’t get too comfortable (I wasn’t comfortable at all tbh), because I had just 3 days to prepare to start chemotherapy.
2. Third scans a charm
Reading over this next post, it sounds like everything happened quite quickly. Which in a way it did and it didn’t. I need to clarify that for each part of the story I choose to share, there are a hundred other bits of detail I have had to leave out. Google told me that to write a good blog post I should use humour, bullet points and be succinct.
To give you an idea of just how not-fussed I was about getting the abdominal ultrasound my Dr had suggested, I waited 3 whole weeks to book it in. Not because I was avoiding it or worried about what the results could be, but because I geniunely thought it would have no consequence. I saw the scan as something to tick off before getting back to exploring my pesky food intolerances.
I walked in to the clinic on a Tuesday morning with hardly a worry, thinking it would take half an hour. I was already thinking about my first client and work straight after.
I walked out of there over 3 hours later with 3 different scans under my belt, an urgent doctors appointment for the next day and a very confused head on my shoulders.
I don’t think I need to go into detail how excruciatingly slow the next 24 hours passed until I saw the doctor again. I’m not someone to be pessimistic or jump to conclusions, but it’s like something inside my head had clicked and I could finally decipher all the mixed messages by body had been trying to send me. I knew I was dealing with worst case scenario.
I can’t remember if I actually said that out loud to anyone at the time. It’s a scary thought to sit with for 5 minutes, let alone 24 hours. By the time the appointment rolled around, I had fully convinced myself that I had some kind of stomach cancer and was ready to hear that result.
When the results were explained to me, it was clear I did have a large mass on my abdomen. What was unclear was what the mass actually was.
I was told that I was young and probably had nothing to worry about, it could be explained away by something like PCOS. No, I didn’t just add that in for effect, that actually happened. Like, really? Are we seriously still running with the age thing? I was sent away with a referral for the Austin and no time frame for when I would get in to the clinic.
On Anzac Day (the very next day) a combination of the symptoms getting worse, anxiety of the unknown, finally listening to my boyfriend and a liiiiiittle bit wanting to get out of a football function saw me to the ED department at the Royal Melbourne. It was there that I had a lot of morphine and, after promptly throwing it up, had yet another type of scan.
The gynaecological team confirmed that the mass was large and looked like cancer, but they couldn’t confirm this without a biopsy. The exact statement they used to explain it was ‘if it looks like a dog, and it barks like a dog, it’s probably a dog.’ They also didn’t think it started in my reproductive system, and a referral was put in to the GastroIntestinal team instead. This was the beginning of a very tedious game of ping pong that would last right up until I started chemotherapy.
That’s how I ended up a little closer to an official diagnosis. On the way home in the car I allowed myself to cry for the first time. I will do a whole other post about how I started to process what was happening because it was tough, and deserves to stand on its own.
So to wrap up, I was discharged from hospital on the Friday night. I may have been discharged from hospital, but that night was the start of my five week stay in limbo.
Spoiler: limbo and ping pong is not a good combination for prolonged periods of time. Especially not when someone tells you you might-maybe-but-probably-definitely-can’t-say-for-sure have cancer.
1. The beginning
If I’m being honest with myself, the beginning probably started a long time before November 2018.
I look back on photos of myself and can actually point out a small visible bump in my abdomen. As a typical twenty-something female I used to be critical of my body, and probably would have told you I just needed to loose some weight. I would later find out that bump was actually a tumour the size of a brick.
But I’ll start things off in November 2018, because that’s when I remember symptoms starting. And when I say I remember them starting, I retrospectively look back and can put the pieces together. Some people might think ‘how could you possibly have a brick sized tumour inside you and not know!?’ but read on before you judge. Ovarian Cancer is sneaky and vague, and I can guarantee everyone reading this will have had a combination or all of these symptoms at some stage (no Karen, this does not mean I’m diagnosing you with Ovarian Cancer. I’m just trying to increase awareness ok!)
1. Reduced appetite: anyone that has known me for longer than 5 minutes knows I absolutely love food and could eat a lot of it. I still hold the pancake eating record at my friend Carla’s house, something that I am very proud of to this day (something I am pretty sure totally disgusted her parents). So warning sign #1 was that I wasn’t anywhere near as hungry as usual. This didn’t phase me early on, because I didn’t really notice straight away. Like with all the symptoms, it started off inconsistent. I would have reduced appetite for a few days but then it come back and I would be happily downing a big plate of my grandma’s pasta. At it’s worst, I remember being out for dinner and only be able to take one bite of my meal before feeling like I was going to throw up.
2. Random weight loss: I wrote this off as because I wasn’t eating as much, I was losing weight. Part of that is probably true. The other part is all the energy the tumour was using up. I also didn’t see this as a negative at the time.
3. Bloating: I’ve always been a bit of a bloater, so I didn’t become overly aware something was different until Feb of 2019. I remember being on holiday in Byron Bay with my partner Ryan and having to buy new shorts because I couldn’t do mine up. At first I thought it was because I was overindulging, but it felt like more than a few too many beers. I would be full and very bloated after eating or drinking only a little bit and the bloat would hurt. I had been working with my GP to explore food allergies/intolerances, so put it down to that and made a mental note to tell him when I got home.
4. Excessively tired: I was working full time in a stressful position, going through the council to get permits to build a house, in the middle of selling our house, moving house and keeping up with all the social events on the weekends. I’ve always lived my life with doing just a little bit too much at a time, so this felt normal and was the easiest symptom to explain away.
5. I needed to pee, a lot: this got so bad at one stage I actually got tested for diabetes (runs in my family). My results came back normal and I was told that I was young and there was nothing to worry about, and to not to drink so much water before bed time.
6. Change in bowel habits: I’ve spent too much time over the last 10 months needing help getting dressed, being showered by strangers, talking about my vagina and looking at my poo to find this embarrassing. But if poo is TMI for you then skip this bit. In the 6 weeks leading up to my diagnosis I had some random bits of blood in my stool. Family, Dr Google and even my real Dr said this could be normal and that I was young and there wasn’t anything to be worried about. I had some random bouts of constipation, one being so bad I was left crying on the bottom of my shower floor. I was told that I was young and there wasn’t anything to be worried about, take a laxative. On the other end of the spectrum when I needed to go to toilet, I really needed to go to the toilet. This was the most inconvenient out of all of the symptoms due to the nature of my work. I had mentally linked this to the food intolerances, and so the last of my symptoms was easily explained away. I was told again that I was young and there wasn’t anything to be worried about. See the pattern?
Raising awareness of young people with cancer is SO important. But I’ll save that for another post because a) I could write essays on my experiences advocating for treatment tailored to my needs as a young person b) you lovely people have already been very generous with donating and IOU a few posts!
So after months of discussions and blood tests, my Dr suggested casually that I should get an abdominal ultrasound, just to be sure there wasn’t anything else going on. And that was the end of the beginning, and the start of something very serious.
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