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The L-word

Jo1 Comment

Today marks 2 years since I finished treatment.

Much like the previous 12 months it’s been a pretty bumpy year. Like many, COVID has continued to wreak havoc on my plans and ability to spend time with loved ones.  

On a positive note, my energy levels have improved a bit more and I successfully transitioned back to full time work at the end of January. Juggling regular medical appointments & full time work can be a little tricky at times. I feel incredibly grateful to be part of a supportive team with a job I can undertake easily (for the most part) from home and have the flexibility to attend appointments as needed.

That said, as much as I might wish for a return to normal or a “new normal” life after a dalliance with cancer is rarely smooth. During chemo we’re told to expect aches and pains, however to expect these to ease as time passes after finishing treatment. This was true for me, except for my legs. They got worse. I got better at ignoring them. However, chronic pain has a way of sneaking up on you & suddenly taking over your life.

In March I was back at my GPs pleading for answers and ways to improve my quality of life. Ending most evenings in tears on the couch due to the pain in my legs was not how I imagined things would be over a year after finishing treatment.

Several weeks, $1000 & 3 new specialists later we had a tentative answer & I learnt a new L-word for the pain in my legs. Lymphoedema.

Lymphoedema (or lymphedema – U.S. spelling) is a swelling of part of the body, usually a limb. Lymphoedema can occur as a side effect of cancer treatment when lymph nodes have been removed or damaged causing lymph fluid to build up in tissue under the skin. Learn more here

Lymphoedema has no cure and requires ongoing management. Now, every morning when I get up one of the first things I do is wrangle myself into medical grade compression stockings. At a time when I wanted to move forwards towards an often mentioned “new normal”, a daily reminder of the impact cancer has left on my body wasn’t exactly helpful. Wearing compression has made a big difference to my pain. Through trial and error I’ve built up an arsenal of other tools that also help.

My new wardrobe staple, compression socks.

My top Lymphoedema management tools:

  1. Wear proper compression socks
  2. Minimise time spent sitting – hello walking meetings, standing webinars & lunchtime yoga.
  3. Continue to exercise regularly, especially hitting my step count
  4. Swim 1 -2 times/week
  5. Manual lymphatic drainage massage – at home & with a professional

Mentally it’s been a pretty rough year, coming to terms with a chronic health condition with no cure isn’t easy – even without a global pandemic added to the mix. I’m doing ok now, but 2021 has been a pretty bumpy ride. Thanks to all who held my hands literally and virtually through these latest bumps. I’m part of a pretty amazing community.

At some point cancer will likely touch all of our lives in some way. I continue to share these updates in the hope it helps you understand the physical & emotional effects of a cancer diagnosis don’t end just because treatment finishes & your scans are ‘normal’.

Naturally my New Years Eve’s celebrations included a cheese board. Today, as I celebrate 2 years since finishing treatment you can guarantee cheese is also on the menu 🙂

In December my compression socks & I ticked off a goal I set back in 2019. Run 10km in the Melb Mara.
Here’s to a 2022 with more opportunities to spend time with loved ones

Scanxiety & Lockdown 5.0

Jo3 Comments

My computer, phone and notebooks are littered with writings from the past few months including ½ a dozen half written blogs.

I’ve had a lot to process the past few months & writing has always been a helpful tool to process this. However, for the first time I’ve struggled with what to share about the last 4 or 5 months as they’ve been rather eventful. That’s a story for another day. For now I’m going to jump forward to today & the marking of another milestone.

It’s 2 years today since I started chemotherapy, the date kind of snuck up on me as I’ve spent the past week in that weird timeless limbo waiting for scan results. However, the iron fist that’s been wrapped around my chest eased when my oncologist uttered the words, “Your scans are perfectly normal.” 18 months after finishing chemo the sense of relief at hearing this is immense.

Image: Flashback to my first round of chemo on July 29 2019 which came with a bonus overnight hospital visit. The pixie cut I got straight after I finished my first chemo cycle.

I’m often asked if scans get easier with time. The answer is yes & no, for me at least. I now know what strategies & tools help me manage my scanxiety but it’s still there especially as my oncology review draws near.

What is Scanxiety?

Scanxiety (n) “scan zi et ee”: Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan).

I’ve learnt that the best tool for managing my scanxiety is distraction. Usually, I cope by distracting myself with friends, activities, good food & the outdoors. (If friends have toddlers I can play with outside even better!).

  • Some of my favourite distractions 🙂

If I’m physically tired I also tend to sleep better. It’s amazing how much more manageable things seem after a good night’s sleep! If I’m struggling with sleep I also have tablets I can take to help me sleep. Rituals like journaling, practicing breathing and meditation and regular checkins with a psychologist also help.

However, waiting in lockdown (Melbourne’s 5th) was harder than normal.  Many of my distractions were not possible. My freezer & fridge are now full & I ran out of Tupperware containers because I did so much baking.

Key takeaways from the past week: silverbeet is delicious if you add enough cheese, garlic & puff pastry, macarons are hard to make & a great distraction, 200g almond meal makes over 100 macaron cookies, & most importantly not even lockdowns will stop my friends supporting me & letting me know I’m loved. Thank-you to these wonderful people X

All this baking is actually going to come in handy as those clear scans mean it’s time to have my chemotherapy port removed!

Just some of my baking efforts from the past week …

1 year later

Jo11 Comments

The 2nd May has long held significance in my family.

It’s my cousin’s birthday.

On this day 25 years ago my grandfather died from bowel cancer.

One year ago today I had a colonoscopy and learnt I had a growth in my colon. A biopsy later confirmed I had bowel cancer.

It’s now 4 months since I finished chemotherapy. I passed my 3-month check-up a couple of weeks ago and have been meaning to share the below since then.  

For me in some ways the last few months have been harder than the 6 prior to that on chemo. It’s been a different kind of hard though.

My 3-month check-up blood tests were “normal”. Normal means the cancer marker test was negative, white blood cell counts within the normal range and my liver seems to be happily ticking along. I was ready to celebrate this news, however COVID-19 meant the celebrations were pretty low key.  However, after my clear CT scan and colonoscopy results back in Jan and Feb a celebration was the last thing I felt like doing. Don’t get me wrong I was very relieved to have clear tests but for several reasons I wasn’t really in a party mood.

The side effects of chemo are lingering and cumulative. I was still feeling like s**t back in January. All the comments about how “well” I looked was a far cry from how I felt. My body felt like I’d run a dozen marathons without stopping. I ached from head to toe by the end of the day and the simplest tasks like hanging out a load of washing could exhaust me. It’s only now 4 months later than I can truly appreciate just how exhausted I was.

Without doubt the hardest part of the last four months has been what’s going on in my head. When I finished chemo it was like my brain finally got a chance to catch up with what my body had gone through over the previous 8 months. I felt overwhelmed by an onslaught of emotions I hadn’t anticipated. Cue more sleepless nights, tears at random times of the day and an undercurrent of anxiety that I struggled to shake.

Navigating my way out of this whirlpool of emotions and starting to process hasn’t been something I could tackle on my own. Family and close friends rallied around me. I spoke with my GP and psychologist who reassured me that what I was feeling wasn’t uncommon -which was a comfort to hear. We discussed medication as an option for stabilising my emotions and helping me sleep. In the first instance I decided to try other options and discuss medication if I didn’t start to feel more settled. Prioritising exercise, getting a good night’s sleep, being careful not to push myself too hard, eating well, journaling, meditation, practicing gratitude and regular counselling sessions have all helped and continue to help.

I also had the opportunity to take part in a pilot of a new group counselling program called Re-Claim Life. I’ve found it really valuable to connect with others my age (25-40yrs) who are also navigating life after cancer treatment. Having the weekly sessions facilitated by trained counselors from Cancer Council has added an additional dimension of support and dialogue to these weekly sessions.

The last 12 months have been one hell of a roller coaster that I wouldn’t wish upon anyone. Now, the uncertainty and limbo everyone’s plans have been thrown into by COVID-19 is feeling eerily familiar. While initially frustrated to again be facing months of ambiguity and cancelled plans I’m trying to keep searching for silver linings. Lock-down is an opportunity to focus on my mental and emotional recovery after cancer, gradually increase my work hours and finding time (& energy) to enjoy cooking again.

That I’m still here, slowly rebuilding physical and emotional strength and planning for the future is an opportunity I am beyond grateful for.

My second home for the last year

Follow-up scans Round 1

Jo4 Comments

8:15am Monday 20th January. My second encounter with CT scan pre-drinks and my first round of post chemo follow-up scans. The pre-drink isn’t the tastiest thing to drink. Likening it to the taste of tank water after a recent rainfall event helped me get my litre down. The purpose of my CT scan is to look for any signs of tumour reoccurrence at my surgery site or metastases (signs of cancer elsewhere in my body).

CT scan pre-drink to help make structures more easily visible during the scan. I was also injected with a contrast as I entered the machine.

The next day I was back at the hospital for my results. After a wait of nearly 2 months my genetic test results were finally back. They were all negative. This means I don’t have any of the gene mutations known to increase the risk of getting bowel cancer. If new mutations that increase bowel cancer risk are identified down the track this might change. My Dr says the chance of this happening is very low.

Negative genetic test results are also really good news for my brothers and extended family. While my brothers both had colonoscopies in 2019, they will only need to have them every 3-5 years. In comparison I will likely be having them yearly!

Appointment 2 for Tuesday was to get my blood test and CT scan results. My follow-up blood tests were normal indicating my liver & kidneys are functioning well. My CEA blood test, which looks for tumour markers in the blood was low. All good signs, unfortunately my CT scan results weren’t yet back.

On Wednesday afternoon I got the phone call I’ve been anxiously waiting for. My first follow-up CT scan since finishing chemo was normal. Normal is good. It means there is no sign of cancer reoccurrence at my surgical site or metastases (new tumours) elsewhere in my body!

Toasting clear scan results with a scotch

My immediate reaction when I was told that my scans were normal was one of profound relief. This was quickly replaced with an eerie numbness and an undercurrent of anxiety not the happiness/excitement I had perhaps expected to feel. In putting these words onto the screen on Wednesday the roller coaster of emotions of the past week hit me. Since then I’ve spent more time writing, seen my psychologist and a spoken to a couple of friends to disentangle my thoughts. I now know that I’m not alone in feeling numb after scans and have been reassured that feeling anxious in my shoes is also not uncommon.

When I look at the horizon I can’t help but feel a little overwhelmed by the long schedule of follow-up appointments; blood tests (every 3 months), CT scans (every 6 months), colonoscopies (in February and then annually). For now, I’m trying to focus on being present and grateful. My scans this week may be the first of many to come, but normal CT scans and bloods are a big positive step forward.

Thank-you Myee for visiting and keeping me company throughout the anxious wait for scan results

Trading lattes for long blacks: Life post-chemo

Jo2 Comments

Today I’m due to start my final round of chemotherapy which means I’ll finish chemo on the 1st of January 2020. However, my cancer “journey” doesn’t stop there. From the conversations I’ve had in the past few months there seems to be not much awareness of what life post-chemo looks like. I hope this blog helps change this. In addition to navigating some of the lingering side effects of chemo I have a whole series of follow-up appointments before on-going surveillance starts.

Finishing chemo is a significant milestone and I plan on celebrating the end of chemo with Scotch, champagne and copious amounts of blue cheese. Getting through 2019 is also definitely worthy of celebration and I look forward to raising a glass with all of you in the near future.

To recap on my 2019:

  • Mid-Feb: Visit GP in Ireland to discuss abdominal pain, blood in stools and bloating. (Also feeling fatigued)
  • 2nd – 8th May: Colonoscopy finds growth in colon. Biopsy confirms it’s cancer.
  • 11th May: Celebrate 30th birthday in Ireland
  • 14th May: Fly home to Melbourne
  • 27th May: Surgery at the Peter MacCallum Cancer Centre to remove 166mm (1/2 foot) of my large intestine & 42 lymph nodes. Biopsy shows cancer had spread to 1 of my lymph nodes & evidence of lympho-vascular invasion.
  • July: Two fertility preservation attempts at Royal Women’s Hospital.
  • 29th July: Round 1 of chemotherapy on FOLFOXIRI regime starts
  • November: First appointment with genetic counsellor
  • 2nd December: Round 10 of chemotherapy – Oxaliplatin and Irinotecan removed due to side effects, continue with Flurouracil (5FU) only.
  • 30th December: Round 12 – final round of chemotherapy starts

I’m looking forward to starting 2020 with a couple of weeks break from the Peter Mac. However I’ll still be a regular visitor there. In Jan and Feb I have my first round of follow-up appointments – CT scans, blood tests and a colonoscopy looking for signs of cancer in my body. This is the first test of whether my 6 months of chemo “has worked”. After this hopefully I’ll enter the surveillance stage. This entails: check-ups and blood tests every 3 months with my oncologists, 6 monthly CT scans, further genetic counselling appointments and annual colonoscopies. This also means plenty more opportunities for lunchtime catch-ups with those of you who live/work in the city.

One of the most common questions I’ve been asked since I started chemo is whether I’ve had any taste changes. Thankfully most of these have been fleeting. The biggest change has probably been in my coffee consumption. I don’t function without my morning coffee however I swapped lattes for long blacks when dairy stopped agreeing with me. I’m back on the dairy again but my stomach still turns at the thought of a latte!

Taste changes has been one of my more minor side effects of chemo. Although chemo is about to finish, some chemo side effects are unlikely to resolve for quite a while. I’ll continue to work with OnCore nutrition to improve my gut function as both my gut microbiome and my gut lining have been damaged by chemo. I look forward to being able to tuck into a big bowl of salad without racing to the loo afterwards.

In the coming months the numbness in my feet which affects my balance should ease as should the pins and needles and lingering cold sensitivity in my hands and feet. If you see me rocking socks and sneakers on a 40+ degree day like today you know why!

Perhaps the biggest side effect to manage is the lingering fatigue which has particularly knocked me around in the last month. This fatigue means my return to full time work is probably still 3-6 months away. I’m grateful to have a supportive employer who is working closely with me on a gradual return to full-time hours.

Getting a regular exercise routine established and meal-prepping my weeks are two ways I’m hoping to help manage my fatigue. If you’re keen to be a gym buddy, join for some weekend walks or help me with a weekend cook-up that would be wonderful.

Memes, Dad jokes, messages and phone calls are all welcome over the next week as I lie low and recover from round 12 of chemo.

The support I’ve had from friends and family near and far has helped me enormously during the last 8 months. For now it’s very much a case of wait and see, which in some ways is harder than chemo itself. However, I know I can count on you all to have my back as I navigate the next steps.  

Running for Bowel Cancer Australia

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I was the youngest patient on the ward after my bowel resection.

I’m usually the youngest person waiting for doctor’s check-ups every fortnight.

It’s a similar story when I go in for chemotherapy.

While the support of family and friends in a time like this can’t be valued highly enough, it’s helpful to connect with others who have gone through or who are going through the same experience.

When I learnt that Bowel Cancer Australia has a peer-to-peer support network for cancer patients (& carers) I made contact with them.

Through the network I have been connected with two Bowel Cancer survivors who not only are a similar age and cancer stage to me when they were diagnosed but they are also Melbourne based.

Being able to connect with other people my age who have gone through a similar experience has been a massive help. For starters I feel less isolated.

Through email, text & face-to-face meetings my buddies have generously shared their own stories with me. I’ve been given a whole heap of tips and had a bunch of questions answered from the perspective of someone my age.  

The peer-support-network is just one of several free support services Bowel Cancer Australia offer. In addition they run awareness campaigns like #Nevertooyoung – which highlights the rising incidence of bowel cancer in young people – and fund bowel cancer research.

Some people run for fun. As you can probably tell from the sweaty mess in the photo below I’m not one of them.

Kathryn & I hiking in Wineglass Bay, Tasmania 2017

However, my good friend Kathryn is. She’s running a half marathon as part of the Melbourne Marathon Festival next month and has chosen to fundraise for Bowel Cancer Australia. If you’d like to support Kathryn and the amazing work Bowel Cancer Australia does you can click here

I’m so touched that Kathryn has chosen to support a charity which has already had such a positive impact on my cancer journey

PS: Since I starting writing this blog I’ve learnt my lovely friend Laura has spent the weekend doing a night time walking marathon in London raising funds for cancer research. She walked 42km (26 miles!) in 6hrs 44 min 49sec. If you’re in the Northern Hemisphere and would like to support her, Laura’s fundraising page is here.

Thanks so much Laura & Kathryn. Next year hopefully I’ll be able to join you.

For now my focus is on round 5 of chemo which starts tomorrow (Mon 22nd Sept)

Laura at the Shine Walk in London this weekend

Silver linings

Jo4 Comments

My life has been irrevocably altered by diagnosis with cancer, as has my family’s. None more so than my Mum, who enjoyed 9 months of empty nesting before I moved in.

My friends would be aware that after leaving home at 18 I swore I’d never move back! While it’s not something I ever planned on doing – Mum and I haven’t strangled one another yet! Plus, living at home is an opportunity to reconnect with my Mum in a way we probably wouldn’t have otherwise.

Similarly, I’ve seen a lot more of more brother Alex since my diagnosis – though rumour has it that it’s the nice cheese and dip in the fridge that keeps him coming around. With James arriving from London this week and Dad planning another trip to Melbourne before Christmas – despite the reason behind the visits – I realise how fortunate I am to have their support.

Silver linings can be found in even the toughest of times. Through journaling and a “not-quite-daily” gratitude practice I’m working to keep reminding myself of these.

Top of my list at the moment is the wonderful messages of support from you all since sharing my blog. I’ve been moved to tears more than I can count and truly feel like there’s an army of people at my side.

I’d like to give a special shout out to Garima who created the amazing boxing gloves image for the blog and will be helping me post stuff here from time to time.

Also, regardless of the reason, I did get to celebrate my 30th in 2 countries. Featuring delicious food, drinks, cake, cake and then some more cake and some very special people I can’t not be thankful for that!

I’m also actively trying to add sparks of joy to my life.

In creating my own silver linings I’m making this whole cancer journey a bit more bearable.

After surgery when I was heading into hospital for my follow-up appointments, I’d make plans to meet friends for lunch or coffee so that trip to the city became about more than a hospital visit. I found it helpful, so I’ve started implementing it again during chemotherapy.

I ask people to join me for my fortnightly day chemotherapy. My chemo day is long, draining and gruelling – I leave Mum’s by 7am and have yet to arrive home before 7:30pm. It leaves me absolutely spent and thanks to all the pre-chemo medication (~14 tablets) and chemo drugs I may not remember much of what is said.

It might sound odd asking you to visit me “at my worst” but in asking you to come to chemo, or pop in during your lunch break, I have something to look forward on a pretty shitty day. It’s a hell of a lot easier to get in the car at 7am knowing I’ve got a visit from a friend to look forward to. (Totally fine if hospitals are not your thing, you can come visit me at home.)

Round 4 of 12 is done and dusted. It went smoother than the first 3 rounds and with the company of friends throughout the day I know there was a lot of laughter.

Until next time I’ll keep searching for and creating my own silver linings.

My cancer story so far

Jo3 Comments

I’ve lost count of how many times I’ve told the story of my diagnosis, surgery and chemo in the last couple of months. It’s a story I’m happy to share – especially to help raise awareness of bowel cancer – but it’s exhausting to tell again & again. So I decided to start writing….

Diagnosis

I started 2019 living out a long-held dream, completing a post-doctoral fellowship in Ireland. After several weeks of blood and mucous in my stools, bloating and a bout of severe abdominal pain I saw a GP at the end of February. My other symptoms included fatigue and a change in bowel habits; things I’d initially put down to the “winter blues” & a change in diet that coincided with my move to Ireland.

The GP recommended blood tests and a colonoscopy to rule out Coeliac disease & Irritable Bowel Disease. After a 2 month wait – on the Irish private health system – I had my colonoscopy on the 2nd of May.

When the nurse drew the curtains and sat beside my bed, I knew that wasn’t a good sign. The Dr explained they’d found a growth just inside my colon (large intestine). However, I’d have to wait for the biopsy results to confirm anything. The good news was the growth was too small to be visible on a CT scan and there were no signs of spreading beyond my bowel.

On Wednesday 8th May I got my biopsy results confirming I had cancer, a moderately differentiated adenocarcinoma. The next few days were a blur of appointments & making arrangements to return to Australia.

After some very special 30th birthday celebrations with my Dad, brother, Aunt and cousin I boarded a flight home.

Surgery

Mum worked her magic lining up appointments and I hit the ground in Melbourne running. I met my surgeon on the 22nd May and had surgery on 27th May at the Peter MacCallum Cancer Centre. I had a laparoscopic high anterior re-section where 166mm (1/2 foot) of my large intestine & 42 lymph nodes were removed.

Biopsy showed that my tumour was 42mm x 25mm in size and had penetrated the muscular wall of the bowel. Cancer had spread to 1 of the 42 lymph nodes along with some lympho-vascular invasion. This meant my next step – after I recovered from surgery – would be chemotherapy.

Chemotherapy

I started chemotherapy on Monday 30th July 2019. The current treatment plan is 12 cycles of fortnightly chemotherapy. My chemo is called Folfoxiri Modified & involves 3 different chemo drugs. You can read more about them here

Chemo affects everyone differently & the side effects are many and varied depending on the person and the chemo regime. So far I’ve had 3 rounds of chemo (most recently 26th Aug).

A quick overview of what my fortnight looks like:

  • Day 1: I have a long day at the Peter Mac having 2 different chemotherapy drugs given via a chest port – a special kind of semi-permanent IV line. I’m pretty wrecked after as it’s a long day and there are several other medications, I’m given to help manage the side effects.
  • Day 2 – 3: “Take-away chemo.” 48 hours of gradual infusion of my third drug. I’m hyper-sensitive to cold & can’t eat, drink or touch anything cold. Nausea, reflux, fatigue, hot flushes, constipation and pins and needles in my feet are unwelcome companions for the week.
  • Day 4 – 5: Fatigue at its worst & spend the day migrating from couch to bed.
  • Day 7 – 12: Energy gradually improves throughout the week and I start feeling more like myself. I also have a check-up with my oncologist to discuss how the last round went & what the plan is for the next cycle.
  • Day 13: Pre-chemo bloods. One of the side effects of chemo is that it lowers your immunity, these blood tests make sure my white and red blood cell counts have recovered enough for the next cycle. I also take my temperature twice a day.
  • Day 14: Fill with good food, good company and distractions before pre-chemo medication starts that night.

One of the hardest things about the chemo schedule is the uncertainty. While the current aim is 12 fortnightly cycles, how my body recovers from each cycle, the severity of my side effects & not getting an infection or catching a cold can all affect when my next round starts.

Staying sane

Being diagnosed with cancer on the other side of the world adds another layer of stress and uncertainly to the experience and I’m indebted to a bunch of people who’ve assisted so far.

From keeping me distracted, helping me celebrate my birthday, attending appointments with me, packing my suitcases, joining me for whisky nightcaps, visiting me in hospital, visiting me at home, sending messages and snapchats, even helping tell all my family and friends, one thing I’ve learnt so far is how incredibly blessed I am with the amazing support network in my and my family’s life.

I’m now a quarter of the way through chemo (3 out of 12 cycles). Through this blog I’ll do my best to keep you updated on the next steps in my journey.

About me

Jo2 Comments

3 days before I turned 30 I was diagnosed with bowel cancer while completing a fellowship in Ireland.

After a prompt return to Australia, surgery and further testing I received an official diagnosis of stage 3A bowel cancer.

Stage 3 gets you a ticket to chemotherapy as it means that the cancer has spread to your lymph nodes (in my case 1 lymph node). I started 12 fortnightly cycles of chemo at the end of July 2019.

Since May life has become a whirlwind of medical appointments but through it all I’ve had an amazing support network at my side.

In writing about my journey I hope to provide an easy platform for keeping friends and family up to date with what’s happening.

Bowel Cancer is currently the deadliest cancer for 25-29 year olds. If sharing my story can help spread awareness that you’re #nevertooyoung for bowel cancer and change this statistic that’s a win too.

If you’re another young person saying #FU cancer I’d love to connect

X Jo