About the author: I am a 38 year old Australian mum of two gorgeous little men, a wife and a proud nurse. Towards the end of 2018, my entire life as I knew it changed with my diagnosis of early bowel cancer. My hope is that my story will help someone who is personally navigating, or supporting a loved one with a major health challenge. I also want to encourage today’s society to take control of their own health and wellbeing, listen and act on their intuition, and talk to a health expert early when their body tells them that ‘something just isn’t quite right’. . .
The cancer management road is rocky, testing, and full of bumps and diversions. However it can also be filled with glorious moments of appreciation, experiences of love and admiration, and beautiful moments of reflection and clarity, and if you allow it- a life awakening . I share this information with you after being given my first ‘cancer all clear’, 6 months after my diagnosis.
Bowel cancer in Australia- don’t die of embarrassment
Before I tell you my story, I will take the opportunity to share some important details about the current state of bowel cancer in Australia. Firstly- bowel cancer is not an ‘old man’s disease’- 15% of those diagnosed with the condition are under the age of 55 years and approximately 45% (almost half) are women. It is the second most commonly diagnosed cancer in Australia and it can be conquered if it is detected early. The symptoms can include the following and need to be discussed with your general practitioner (GP) AS SOON AS POSSIBLE- a change in bowel habit, a change in the appearance of bowel motions, blood in the stool/rectal bleeding, frequent bloating/gas pain, unexplained low red blood count (anaemia) causing fatigue/weight loss, abdominal/rectal lumps, pain or swelling (Bowel Cancer Australia, 2018). Remember, our bodies are very good at letting us know when there is something wrong- it is then up to us to get timely help.
While there can be no guarantees, there are easy lifestyle choices that you can make to reduce your chance of developing bowel cancer (and other cancers) such as: maintaining a healthy weight, not smoking, regular exercise, eating a clean diet with adequate fibre, reducing alcohol consumption, and reducing red meat/processed meat in take. Click here for more information on bowel cancer prevention and lifestyle choices.
The diagnosis and the surgical work-up
Monday the 20th of August 2018 will be forever etched in my memory, like a bad tattoo that you wished you had the foresight to not go ahead with- it will stay with me forever. My new life began when I was at an appointment with my 3 year old son. I had a missed call on my mobile, and I instinctively knew that it was my GP. When I listened to her message asking me to come into the practice that day, I of course knew that she had bad news for me.
On the Friday prior, I had undergone a colonoscopy to investigate some non-specific intermittent stomach cramping, and some mild occasional stomach bloating and pain (Click here for information on bowel cancer symptoms). I have no family history of bowel cancer or bowel disease, and I had no bleeding. But what I do have is a trust in my intuition- and my body was telling me that ‘something just wasn’t right’. It was the recurrent niggling thinking of ‘I really should see a doctor about that bloating’, and the thoughts of ‘hmmm, that cramping just isn’t normal’; acting on the symptoms; and a skilled GP assessment and referral pathway that has saved my life.
My amazingly talented GP (and guardian angel) had recommended the colonoscopy to ‘cover all bases’. Bowel cancer can be difficult to diagnose particularly in the early stage. Early bowel cancer symptoms can ‘mimic’ many other conditions including irritable bowel disease and food intolerances. I must admit that even though I have been a nurse for 18 years, I never in my wildest nightmares could have imagined what has unfolded for me and my family over the past 6 months. How did I miss that I had something seriously wrong with me? Had I really been that consumed by motherhood, work and general life to totally drop the ball on my own health? Yup! I had (more on this another time).
After my colonoscopy, the Gastroenterologist who performed the procedure told me that he had removed two small polyps (a small growth of tissue on the wall of the bowel, often harmless, however can develop into cancer). He said that he was “a little worried about one of the polyps”. And so began my new life as a mum of two little boys, a wife, a daughter, a friend, and a colleague who had bowel cancer.
We have all seen in movies or read accounts of how people react when they receive life changing news which confronts a person with a potentially early mortality. Or some of us have family and friends who have retold their stories of being given ‘bad news’. What I really want everyone to know, is that no one else’s story will prepare you for your story- and your story will be completely different, so please don’t try to compare. Your age, your pre-existing general physical and mental health, the current stressors in your life, your responsibilities (family, work, community engagements), your financial situation, and your on-going support group- will all have an impact on how you respond to your diagnosis and travel through your treatment or management plan.
As I sat in the doctor’s office I felt like I was sucked into a surreal reality vortex, and time just stood still. I will never forget the words that were said, how I felt, and my complete visceral body response. My 3 year old and 18 month old were with me because I didn’t have anyone who could look after them while I went to get my results. Admittedly I have a ‘need to know nature’, and I could not wait until later when my husband got home from work. So as my boys busily pulled the clinical disposable paper off the examination table, foraged through medical equipment in drawers, and repeatedly asked for a balloon- the doctor said to me “your test result is positive”. Let’s face it, a phrase that you never want to hear unless you are hopefully awaiting the news of your pregnancy.
I asked, “positive for what?”, and was told “I’m sorry, you have cancer”. I looked over at my boys laughing and playing and I could not believe that my world in an instant had disintegrated around me. I was so conscious of not distressing the boys and I quietly sat in terror, tried to cry discreetly (failed) and looked at the GP and said “I have two little boys, what am I going to do now?”.
I could feel the warm, caring and worried emotion coming through in my GP’s voice. I was so glad that she was the one who had ordered my tests, and was there with me on that day. She showed genuine empathy, a skill that cannot be taught. She asked me if I had help and a supportive partner because I obviously needed both. It was clearly and calmly explained to me that I needed an operation and an urgent surgical work-up. Repeat blood tests were organised, now including tumour markers. I had to have a CT scan to look for evidence of cancer spread (metastasis), and find a surgeon ASAP.
Being a nurse and lucky enough to have private health cover, I promptly decided that I would be choosing my own surgeon with the help of a few very special work colleagues and my mum who is a nurse in another city (a good surgeon’s reputation will follow them around the State). As I left the GP’s office, the irony of how I’d put off my colonoscopy for about 6 weeks because “I didn’t have time”, was not lost on me. I certainly did not have time for Cancer- but life can have a funny way of pulling us out of our daily grind to ‘wake us up’, and make us create time.
The days that followed the ‘beginning’ of my diagnosis were tough. I say beginning, as it was impossible to tell the extent of the cancer until after the biopsy results were available from the tests performed in the surgery. I found myself immediately going in to ‘project management’ mode- project ‘Let’s Get This Shiz Over With’ mode. First I had to tell my husband. How do you tell the man that you love, the father of your children- “sorry hun, I have cancer and P.S I don’t know how bad it is”? How do you tell your parents that you have cancer? No parent should ever have to experience their child potentially facing death. Well……. you just have to put your big girl undies on, push through the fear and tell them. There’s no right or wrong way- it’s what works for you and your family.
The mental marathon begins
Although I knew it was unwarranted, I had this profound guilt and worry for those around me. The unanswerable questions and worries repeatedly raced through my mind. How would my husband manage full care of the children and possibly me while I recovered……wait- what if I don’t recover? How will he be able to work while caring for me and our children? Does he have enough leave from work (no he didn’t). Do I have enough money in my Super- will it pay off the house if my condition is terminal? Will I see my boys start primary school? How would they manage if my condition deteriorated ….. and I die? I really don’t want to be a sick mum. How can I do this to my family? Other people ‘get’ cancer- not me. I’m lean, reasonably fit (lets call it ‘mum fit’), I eat relatively healthy- how did this happen? How will I tell my best friends- they have enough going on in their own lives? How will my already extremely busy work colleagues now take on my load? I don’t want to be dependent on anyone…..Gaaah what a complete an utter life disaster.
And so my phone notifications begin, sort of like when you announce your engagement or pregnancy-there is a notification hierarchy specific to your family, and you follow that. However with cancer, you also have to notify in accordance with practicality- and in my case I had to notify my boss and my son’s day-care very early on. My wise surgeon told me, this is the time where you “phone a friend, rally the troops, and get people in to help you”. And I can tell you that he was so right, and at many times I did feel like I was in a battle-sometimes physically, sometimes emotionally and often both.
For about 5 days, I would wake up every morning and have a split second where I had forgotten our new reality. I cherished those moments. Suddenly I had become one of those people that has a pre cancer diagnosis life, and a post cancer diagnosis life. This finally cemented into my mind when my friend from high school (who has had her own cancer experience), said something like “you will become less fearful as time goes on- but you will ALWAYS be a cancer patient”. And I do know what she meant. I will always be the mum that had cancer, I will always have a surgical scar, I will have a forever changed digestive system, I will always have cancer in the back of my mind- and quietly question every new spasm, tingle, and ‘funny feeling’. I will also now always look at life with new meaning, clarity and perspective.
I also started to wonder how cancer would affect future friendships and future jobs. What if my post cancer life has also given me the label of ‘potentially unreliable’ or possibly worse- ‘fragile’? To many people this may sound superficial, petty or seriously low on the scale of current important issues. Of course my survival and my/my families’ wellbeing are the most important considerations. But cancer has caused me to examine and ponder every aspect of my life. And not necessarily for logical or rational reasons to an outsider.
Any unmanaged fears, worries, anxieties, health issues and old psychological wounds (that you didn’t even know you had) may surface during a life crisis. While this is seriously tough and honestly pretty inconvenient, I have found that through working on my mind set- I am far stronger to tackle the physical upheavals. A special note to mums- you have grown and delivered a human, remember that you have more inner strength than you every thought was possible. Call on that strength every time that you need it.
The pre-operative tasks ramped up (purposeful mind saturation) – I was bulk shopping and cooking, setting up direct debits for bills, talking to various government organisations to determine what support we could access, organising the house to be cleaned and for the garden sorted out, organising a Facebook group for post-operative updates, briefing day care so that my boys were given the extra TLC that they needed- just to list a few. Just like life in general- if you feel organised and that you have ‘managed’ what you can, the challenges are more easily dealt with.
The surgical plan
A few days after my initial diagnosis I was in the surgeon’s office and he explained that I needed to have a right hemicolectomy, which would mean a large portion of my bowel would be removed (click here for right hemicolectomy information). I was told that it was a ‘big’ operation, I would need a week in hospital and we would not know the severity of the cancer until about 5 days after the operation. I would need someone to be at home with me for atleast another two weeks after my hospital stay (especially since we have two young children). The tissue and lymph nodes removed during the surgery had to undergo laboratory testing. Risks and potential complications were explained including the possibility of a colostomy (which I have been lucky enough to avoid) and of course the risk of death. As with all medical procedures, there were risks with this surgery.
In that appointment my husband bared the strength that I needed. He sat through the appointment with me and held my hand. He comforted me as I cried and explained (pleaded for help) to the surgeon that we have two very little boys who need us. He also asked the surgeon his questions- such as will I need to go to intensive care after the operation, and he reminded me to ask about a particular drain that I was worried about needing after the surgery (my nursing background has proved to be both a blessing and a challenge). Having a loved one by your side during these appointments is so important- even if you are fiercely independent and a ‘solo sorter’ like me, please ask for support. You do not need to do this alone.
After the appointment with the surgeon I felt like ‘the wind had been knocked out of my sails’, and I quickly worked out that I had been somewhat in denial. Although I’m a glass half-full kinda gal, I thought that I had been positive yet not completely oblivious to what the future may hold . It occurred to me that I was potentially sitting in the ‘far too optimistic camp’. Or was I? Perhaps I had just decided that I was going to tackle this, like every other life challenge and do my very best to be fit and well again!
In reflection, I was so rattled because the surgeon stressed repeatedly that we would need a lot of home help, he was very clear that he could not tell me my prognosis until about a week after the surgery, and kindly pointed out that 2 weeks was an acceptable duration to wait for the operation- because “I hadn’t got my head around this yet”. He was of course right- how could anyone possibly come to terms with all that I had to consider, within a couple of days.
Telling my big boy
The morning of my hospital admission came around quickly. We had decided to wait until that morning to tell our 3 year old that I would be going to hospital for the week. After breakfast I sat with my son, held him tight and explained that “mummy was going on a big adventure, to have a ‘tummy ouchie’ removed by a very special doctor”. It helped that he had been in hospital about 10 months earlier to have his tonsils removed, and he still regularly lovingly reminisces over his post-op jelly.
In my following posts I’ll write about advice for partners, carers and friends; considerations for health professionals; my hospital experience; recovery in the short-term; parenting with illness and recovery; life lesson’s as I see it, and getting on with life.
Remember- listen and act when your body whispers- it may just save your life.
Early helpful resources- don’t do it alone
Bowel Cancer Australia https://www.bowelcanceraustralia.org
Cancer Council https://www.cancer.org.au/
Cancer Council Financial assistance https://www.cancer.org.au/policy-and-advocacy/supportive-care-policy/financial-assistance.html
Carer’s Queensland https://carersqld.com.au/
Headspace Meditation for Cancer: https://www.headspace.com/blog/2017/04/16/meditation-and-cancer-patients/
Mummy’s Wish https://mummyswish.org.au/