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Sophie’s Story

29 Jan 2019 by Krystal Barter
Sophie’s Story

Dear Cancer, I’ve got a bone to pick with you…

There are a lot of questions coming at me from all angles at the moment (including my own currently unanswered ones) so I thought I’d pop down a running timeline documenting my recent metastatic cancer diagnosis and what I know so far.

Dec 19’

The end of the year always brings to mind certain things you have to do.

For the past 2 years, mine was all about making sure everything with my body was OK, steeling myself for the three family Christmas events upon me that year (actually make that 4!) and tying up any loose ends.

There was a scare not many people know about, save for a few humans I chose to tell and close family members.

I felt a tiny pea sized lump on my sternum, close to the right side where my previous cancer had been. I flagged with my GP, got a scan, booked in and then got them to send results to my trusted specialist.

I was technically out of his care as a breast cancer patient, being that all breast tissue was removed with my mastectomy of last year.

Even doing a check up manually was pointless, and bloods even more so according to him.

I thought that’s odd, but he’s the best. I’ll listen, because I’m literally 2.75 years from remission and this guy seems to be the best in his field.

Being Christmas, he did me a favour and reviewed the unknown lesion which clearly measured enough for him to take notice. He organised a follow up scan in three months to monitor any abnormalities.

“Could be extra dead tissue, could be nothing. Better safe than sorry. Please tell your family I wish them a very Merry Christmas.”

Jan – Feb 20’

I was wearing these tight fitting high waisted jeans at the start of the year at a picnic for my friend’s birthday in the Carlton Gardens.

I leant down awkwardly to pick something up and heard and feel something fracture or click on the left side near my rib. My family, doctors and physio all alike say I’d mostly likely “torn an intercostal muscle” but it didn’t feel that way.

I booked an x-ray thinking maybe something was out of alignment with my body or pulled something at pilates, but the pain persisted enough to wake me and my partner up several nights following.

When the x-ray didn’t return any fracture, it was decided my body just needed time to heal.

In the back of my mind, there was that niggling feeling of doubt, but only results that “show a fracture or weakness would be sent onto for further review with my specialist.

With nothing else to go on, i sucked it up, and went about my life.

March – May 20’

COVID hits. COVID habits hit hard too. They mask the middle section pains I’d been experiencing replaced with new gynaecological and accompanying lower back pain.

Booked the appointment with the GP for a referral to have an internal ultrasound and just check in to see if anything was out of the ordinary.

One ovary was a bit larger and I have a history with previous paraovarian cysts, so a follow up is booked in for three months time.

I am lulled into a false sense of security that my body is just being difficult during these uncertain times, look at my diet, curb my weekday wine, pull myself up on the exercise factor and try and get back into a routine.

April 20’

Standard oncology check up appointment comes around and I attend. This time though, the appointment is actually not as standard as it marks nearly 3 years since my diagnosis; the 5 year mark meaning remission in the medical world.

My oncologist and I exchange smiles through our masks and air high fives. He’s so happy to see me doing so well.

I tell him about my new job, how I’m looking forward to moving out with my partner, feeling like I’ve finally come out of the fog that shadowed my early thirties whilst recovering from breast cancer and its after effects.

We chat about what’s next and I request for a referral for a gynecological specialist moving forward, even though I’m in a new relationship and not ready to “think about babies,” just yet.

We also discussed how my specialist doesn’t monitor people post a certain point and he confirms he has heard there are two schools of thought about what is actually best practice. He however, was on the other side.

He offers to do a manual breast / lymph node examination every check up for the next few years, citing that he believes I should have it done by someone who knows the nature of my medical history and what to look for.

I leave feeling empowered and like I have things under control and celebrate the milestone with family and friends via Facetime.

May 20’

COVID spikes and makes it nearly impossible to physically see any medical professional face to face outside of urgent symptoms.

During this time, I see a never ending rolodex of GP’s, as my preferred one is never available.

Each 15 minute session is taken up the majority time by me updating what is all documented on my patient profile. At this point I am experiencing increasingly worse abdominal pains, bloating, insomnia and mood changes.

I explain I think these recent issues are symptomatic of something more chronic and acknowledge the impact of the external stressors* that have also contributed to this and burnout from work.

I ask if there’s any tests that can happen but they’re reluctant asl it’s highly likely to be stress related given a lot that had been going on, and COVID in general.

“Eat better. Stretch. Breathe. Meditate. Try and maintain your stress levels.”

I agree, too tired to push any further, and avoid contacting my family with the usual lengthy health updates.

It’s during this time I start to rationalise that if there’s something wrong, it’ll either be resolved by one or two things.

The first being stress reduction; a week’s leave of WFH, to help sort out life admin, and of course to have a well deserved break.

The second was more obvious; checking back in on my gynaecological health, with my follow up gyne scan appointment booked the following month.

June – July ‘20

I’m experiencing insomnia, picking fights with people for no good reason, my patience for the usually entertaining WFH communication breakdowns start to really weigh on me and my mood changes at the drop of a hat.

The symptoms are now a mix of irregular menstrual cycles, and bowel movements with pain in lower back, and abdominal region, bloating and weirdly enough an unrelated middle ear infection.

My GP suggests that as a precaution, I should be tested for COVID, as I’m representing with similar symptoms. It comes back as negative

It is also during this time I become very fatigued and put it down to just not being active enough. I engage a clinical osteopath and pilates clinic, convinced I just need to realign myself after being in lockdown for so long.

Aug 3

After a rough weekend of feeling unwell and no appetite, I begin to feel really off.

I have to call a bulk-billed service At-Home-Doctor service to come and see me at home. I explain the symptoms were similar to COVID, despite testing negative from my recent rest.

With my varying symptoms and lack of appetite, the doctorn concluded it was most likely a bug called Norovirus that was going around. I’d take anti nausea, the fatigue would wear off and I’d come good in 2-3 days.

He assured me if it didn’t go away to then persist as it could be inflammation of a different kind, which was the first time I start to think maybe this is more digestive and gut related than previously thought.

Sept 11

Fed up with the stress from not being able to function properly, I book a colonoscopy and gastroscopy to investigate.

I had organised a day off work for my partner’s and my anniversary that following Monday, but decided to extend this in order to get some R&R before the procedure and have a break after a particularly busy period at work.

Sept 13

I started experiencing nausea and bloating even though I had started to feel better early that week.

It’s 2.00am and my pain is worse. I experience uncontrollable pain in my lower left abdomen prompting my partner to call an ambulance and arrive at St Vincent’s at 3.00am.

The paramedics try to insert pain relief intravenously on my right arm, which fails due complications with my veins from previous previous treatments.

They instead give me the green instant (morphine) whistle, like they do on Bondi Rescue, and I crack a few jokes, trying to settle mine and my partners nerves in the process.

The ER is dead due to COVID, but lots of codes are being shouted over the mics. No one really jumps on me immediately after I enter the ward. It’s lonely and I’m high on pain meds, and just want to be able to sleep.

After quizzing me yet again on all my medical history, the ER doctors organise an urgent internal ultrasound, to ensure there’s no sign of twisted or burst ovaries.

On screen, my insides are being narrated with what seems to be my retro flipped uterus and right ovary being hidden on the scan, refusing to come out to play.

There’s nothing out of the ordinary so they order a CT, as I’m still experiencing large amounts of what is now what is looking like referred pain.

The sample of blood taken from me earlier reveals high inflammation markers and low haemoglobin levels and I have the CT after which I’m sent back to my bed to await results.

I’d been in the ER now for nearly 7 hours, having several different rounds of pain management rendering me pretty much useless for any information flying my way.

The CT scans come back after several more hours and the surgeon on-call apologises for the delay. She adds she was actually tutored by my own breast cancer specialist who performed my original mastectomy.

Suddenly a familiar face peeps around the corner of the hospital curtain. My Dad, the biggest germaphobe of them all, is in an ER during a pandemic.

He does a Howard Hughes routine and over-exaggerates using the hand sanitiser, making me laugh for what feels like the first time all year.

Still being out of it, I think he’s here to collect me and to give my partner some time to sleep. He explained the surgeon called him, told him the results were oncological and that I would need support.

“The CT scans unfortunately have shown that the cancer is back. It has metastasised to spots on your liver, spine and ribs.”

I break down immediately after having no sleep but also out of a weird sense of relief and shock. I had this feeling something was really wrong and sadly on this occasion, I was right.

Dad starts crying and he takes his mask off. And my stepmother who is waiting in the car having driven him comes in to join us and also hear the news first hand.

My stepmother is uncharacteristically in shock and visibly upset for me and my father. She only knew what my Dad was told of the nature of the call indicating an oncological result.

She recovers and then helps us both comprehend what the on-call surgeon relays, asking the questions we are both too scattered to ask.

I go home to my partner after having not slept and break the news with the help of my family. It almost kills me walking up the stairs but I do it, to be in a comfortable place and close to my new pet rescue cat.

Diagnosis

I saw the Oncologist on Monday 14 Sept who confirms I’m Stage 4 with metastatic cancer on all three areas covering my liver, spinal and rib bones.

My oncologist says there are a few scans and tests to get out of the way before we can look at treatment options.

It is confirmed that despite all the treatment over the course of the past 3 years for my breast cancer there were either cells that escaped, undetected which have either:

  1. travelled via the blood ‘metastasising’, or
  2. have been there dormant all this time.

Pain management

My team has organised pain management in the form of targeted radiation for my spine.

I will be doing this with my original Radiation therapist, in a familiar location at St Vincent’s, where I originally had my breast and lymph nodes done.

After this, I can continue to walk without pain, (around inflammation on existing Harrington rods, I’ve had since childhood Scoliosis.)

Radiation will start from Friday 25 Sept pending any residual pain from my upcoming liver biopsy, and will run for 5 short burst sessions consecutively finishing on Thursday 1 Oct.

The liver biopsy will then be used to identify if the original cancer has metastasised into the same hormone positive cancer as the breast, or if it has morphed into the hormone negative type.

If the latter, it may mean a more invasive treatment plan than we’d hoped but I won’t know these results until my oncological team has a treatment plan ready for me, after consultations next week.

Prognosis

Still as of yet, unknown. Appointment set to discuss potential plans for treatment and or prognosis with my Oncological team has now been scheduled for Wed 7th Oct.

How I’m feeling

It varies. I’m actually relieved in a way I finally know what was causing me so much pain.

On the other very important hand, I’m terrified of giving up this life I’ve just gotten back and losing time with people I love, seeing my niece and nephew grow up and of course, finally finding true love with my partner Jay, and starting our lives together, with new fur cat baby, Venus.

Some days I go between a Yoda Pez dispenser, shooting out wisdom, and feeling like I know what’s happening, **the answer always being “42.”

Other days (mostly nights) I lament, ruminate and feel what I need to, angry at this bastard of a disease that seems to not want to leave me alone.

Stages of Grief

I will no doubt be going through the 5 stages of grief over the course of the next few months regardless of my prognosis and treatment plans.

Anger has already happened over the past week, mainly due to the short and trauma-filled time I’ve had to digest this diagnosis. More pointedly though, I’m so angry for the pain this is putting my loved ones and family through.

The steroids also combined with months of insomnia have also kept me up the past week, and have really messed my mood. I often get up in the middle of the night and lie there ruminating or sort through a bunch of homewares from Tupperware to the linen cupboard in an ill conceived attempt to remain calm and keep control

How can I control this? Where did I go wrong, who is to blame?

Short answer? No one but the Big C.

It’s sneaky and is good at hiding undetected for years which is why when you consult Dr Google, with symptoms, it’s always cancer.

Denial is another. As I type this, I’m literally looking into all the topical CBD treatments to rub all over my body thinking maybe I could be one of the lucky ones, and beat this!

I’ve had so many wonderful humans offer to send me stuff, including one who is sending an almost contraband potent form of CBD oil, which if it doesn’t cure tumours, at least will make me pain free and on another plane of existence. 420, baby.

As for the next three stages, they’ll come when they come.

Bargaining, Depression & Acceptance.

And when they do, I’ll be as honest as I need to be and will not be offended if people cannot handle the brutal honesty.

You’re here until you can’t be any longer. I’m an intense person, I dominate due to my gregarious nature, and people do find this jarring.

But if you really know me, you’ll know I need to get this out via my words on whatever platform, through creativity on whatever medium, or even taking out a hit on innocent crockery, as my way of getting through.

That’s all for now folks…

I’ll be in touch when I have more updates that I feel need to be shared.

Knowledge is also power so I’m sharing the shit out of this experience, and maybe one day another person can read this and resonate with it, or at the very least, I hope this prompts you all to listen to your bodies, when they are at their loudest, push for answers.

Soph, OUT

 

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