A Year Worth Living - My Cancer Journey

At 66, Helen was excited to embrace retirement and whatever it might bring. However, unforeseen changes disrupted her plans, leading her into an unknown world. Like walking through closed drapes...

 

The year 2022 was unfolding as every other year had - very nicely thank you very much!  I was full of anticipation and expectation for anything and everything that would come my way.

At the end of January I celebrated my 66th Birthday.  A week later I took Long Service Leave heading into Retirement.  I was leaving my job as a team member of the Education Support Staff of a local school, supporting funded children in a primary school setting.  This would mean that I would not be returning to school and would be establishing a life outside of the paid workforce … for the time being anyway!  

I was planning to do some voluntary work and becoming more involved in the activities of my church.  I was going to do as much catching up with friends and family that I cared to over many coffees, lunches and outings.  I was planning to do whatever I liked because I wanted to and could, not necessarily because I had to or was required to.  I was going to let go and let God!  And oh how that appealed to me!!!

This was a new freedom I had looked forward to.  Nothing had been planned in any shape or form, and while I knew that it would take time to forge and materialise, I was going to enjoy whatever unfolded to the max!!

So almost immediately I sent off an email to another local primary school indicating that I would like to volunteer my services.  I included some of my experience from over many years, suggesting that I could be helpful in listening to students read, but would be happy to be placed wherever they felt they could use me.  I eagerly awaited their response.  It came quickly telling me of a child who could benefit from some support in the classroom.  At the time he wasn’t attracting any funding when perhaps he should have, and so any assistance would be welcomed.  Thus I went from my paid job to volunteering in a similar capacity … and I loved it!  There were so many positives!!  I could continue to use my experience where it could be used effectively.  I could walk to and from the school.  I could give all care with no official responsibility, no outside duties and no staff expectations.  I could walk the school grounds during my morning break at an intentional exercising pace, instead of having to have legalese eyes wide open watching and supervising children.  Nor would I need to get caught up with the politics and craziness which most work places attract wherever there are a good number of staff.

Ahhh … this could almost have been described as idyllic!!   

So two mornings a week I would walk to the school for a 9.00am start and walk back home at midday.  These mornings formed the initial base of my new routine and I so looked forward to each and every session.  

The sessions fitted in well with my desire to sign up at a gym.  Having never worked out at a gym before, it was an exciting prospect.  I had no idea what was involved, what the expectations were, the way my body was going to feel, what to wear, etc..  So blindly I registered at a nearby gym, knowing that I could walk there and back as I endeavoured to keep fit and to exercise wisely.  After being introduced to each and every machine by the young, handsome, ultra-fit trainer, I was able to work the machines at my own pace.  This I thoroughly enjoyed!

I was taking on new endeavours and was giving myself the freedom to enjoy them without compromise and guilt of cost or time. 

The first few weeks of leaving my workplace were consequently looking promising and were showing much potential as to possibilities that could abound!  Little did I know, or even suspect, that my life was on an imminent trajectory for change.  Change in ways that I never would have suspected or imagined.  It would be like walking through heavily closed drapes into an unseen world.  It would be the surprise that kept giving and giving and then gave even more!

During this time, seemingly disconnected, the last orchid I have in my possession which had belonged to my dear dad, finally flowered.  It had not flowered at all in the 7 years I had lived in my apartment, but this year, in this month, it bloomed gloriously.  Dad loved his orchids and tended them with so much love and care that it was quite disappointing that it had not produced blooms earlier.  But it did now … as if it was privy to some knowledge of all that was going on and would transpire, and that to bloom would be such a blessing to me.

It was on a Tuesday in March when I received notification that my bi-annual mammogram was due and that a mobile unit was going to be in the Library car park near the local school I was volunteering at.  How convenient was that!?!  So on my way home after a session at school I stopped by the unit where two lovely women were on duty, but about to go to lunch.  They kindly postponed their lunch break for half an hour and did my screening while we chatted and laughed in the small space.  When they’d finished and completed my details, I leisurely went on my way.  Easy peasy!!

The following day I received a phone call from Monash Moorabbin Breast Clinic asking me to make an appointment to go in at my earliest convenience for a further mammogram, as there were some discrepancies in the imaging taken.  Thinking that there, no doubt, had just been some problem with the actual mechanics of having the screening done in the mobile van, I happily made the appointment for two weeks’ time without a second thought.  

Attending the clinic for my first time, was quite confronting in that not only was the small waiting room full of women mostly in white surgical gowns, but there were hardly any seats left on which to sit and I wasn’t quite sure what my strategy should be in coping with this.  Should I stand, request a seat or perhaps just stand in a corner?  It turned out that there were two separate areas to wait in and after checking in at reception, with some more details taken, I was shown to a side room to wait.  Women came and went.  Women went and changed into the white gowns and came back to wait.  Women came, were called for their appointments, and came back to wait.  So many comings and goings! 

My turn finally came after what seemed a long time, and I was asked to change into a gown and then to go back to the waiting room to again wait to be called.  When I was called I had a mammogram done.  Apparently the mammograms performed at the hospital were a little more reliable and conclusive, being taken under different conditions with more reliable machines. 

When I was called again, I saw one of the doctors/surgeons - a lovely, gentle, well-dressed, handsome, young man who didn’t mince his words.  The cancer care nurse also came into the appointment.  I must say I did wonder why she was in there with us, but as it turned out she was there for emotional and physical support and to hear what exactly the doctor was telling me.  

I had a 3.5 cm tumour on my right breast.  I had a Triple Negative Grade 3 Invasive carcinoma in its early stage, sitting right next to a muscle.  While I had been waiting in the waiting room, the doctor/surgeon had been meeting with two other specialists and the care nurse to firstly confirm the diagnosis, and secondly to decide on a plan of action for my treatment and care, and planning a pathway of attack.  I must say that this actually gave me confidence and reassured me that the correct decisions were being made, as it wasn’t just one person making all these decisions for my care but it was a team.  

I want you to know too that being a public patient made no difference at all to the high level of care given to me and the negligible financial outlay I was to contribute.  I was beyond grateful for everything!

The doctor explained that treatment would require chemotherapy, radiation (radiotherapy) and surgery and dependent on what the outcomes of these treatments were, follow up medications may also have been required.

Straight after this appointment I had a meeting one on one with the Cancer Care Nurse who explained in more detail how this, generally, was all going to look and play out.  She answered any and every question my shocked mind could think of and provided me with some very easy to read and comprehensive literature.  I came home well informed for those first weeks of what would turn into months and months and months of treatment and coping with all that was associated with that.  She also started to organise dates for chemotherapy, more appointments with a doctor and an oncologist and provided a 24 hour phone number I could call at anytime for any reason through the journey.  

Next I underwent a procedure wherein a needle biopsy was taken and sent off for testing.  At the same time a tiny titanium ‘clip’, also called a marker, was inserted where the biopsy was removed.  This clip shows up in mammograms indicating the area from where the biopsy was taken, assisting the surgeon to find the exact spot if more tissue is required to be removed later.  This is a safe procedure.  It is safe to stay in one’s body, cannot be felt and is never removed.  Who would have known?!?

This took all morning and by the time I got home I was exhausted.  I must say here how fortunate I am to live so close to such a well fun ded Breast Cancer facility.  Not only were screenings carried out here, but also all the specialist services required in the fight against this cancer were housed here too.  

Monash Health Moorabbin Hospital works hand in hand with other facilities such as Monash Medical Centre Clayton providing a complete, effective and efficient treatment centre and inclusive care packages for each diagnosed patient.  Many patients needed to travel countless kilometres to attend, while it took me 15 minutes tops to arrive at my destination from home.

At this stage I hadn’t shared what was going on with anyone.  I am wondering now if I was hoping it would all go away and someone would say that it was just a joke.  But of course that didn’t happen!

The following week saw another appointment to firm up the Chemo schedule, filling out forms and check and report on the biopsy.  All was good and going to plan. On this particular day my sister Vikki and her husband Sam were coming down to my home for lunch and it was finally such a blessing to share and download with these people I loved, all that had happened.  It was a shock to them as it had been to me.  As we talked, we realized that we knew of no one in our family who had had cancer.  I had been healthy and well with no indication of any problem and hadn’t even been able to feel the tumour, even when I knew where it was.

Sharing the news with my sons and dear friends I found very difficult.  In fact there was one dear friend who I couldn’t share with until my treatment was finished.  I just didn’t know how to do it … how to find the right words to say … and it just became harder and harder the longer I had put it off.  She had been through this herself many years before!  

Disappointingly I had to notify the school too that I would need to cease volunteering after having been there such a short time, as it was clear that I wouldn’t always be feeling well enough to go.

Then a week later (my life seemed to work in weeks during this time),  I left for a pre-arranged week to visit Canberra to stay with my sister Kerry and her husband David.  Here was another, and one of the many, many blessings I would know throughout this journey, and another chance to share and brainstorm how this may look from a practical perspective and from my point of view. With them and their praying community, began the prayer support that carried me through many a struggle, many they would never know of, and many I couldn’t even put into words.  I would spend months resting and relying on those strong eagle wings of love and prayer.

And so began my treatment …

Blood tests immediately followed through my local GP.  These were to become such a familiar part of the treatment, so much so that I quickly developed quite a lovely relationship with the nurse who I would see regularly for the collection of bloods.

Early in May, two of my sons joined me to walk the Mother’s Day Classic.  The Classic raises awareness and funds for breast cancer research.  A couple of dear friends surprised me by running at this event too.  Vikki and Sam also participated in the walk in the city.  All were such a terrific support and encouragement in those early stages of not knowing what was ahead. 

At the same time, another dear friend was going through breast cancer too.  She was undergoing surgery followed by radiation.  While her pathway of treatment was similar, it was different!  We were lovingly able to share and encourage each other in what was happening and how we were coping … and still do!  When we were not feeling ‘normal’, it was so good to be able to share that it was ok and just a new normal for us for that time!

From then on the precedent of copious numbers of appointments was set.  These were inclusive of Breast Screen Surgery Specialist Appointments, Oncologist Appointments, G.P. Appointments, Imaging Appointments and other associated appointments depending on the stage I was going through. 

I had a flu shot and my 4th Covid dose both in preparation for the days ahead.

When my Long Service Leave from my paid job was coming to an end, I made a time to meet up with my School Principal.  After a lovely catch up about my situation and general chat, she kindly changed my situation from ‘moving towards retirement’ to sick leave which not only enabled me to access the sick leave I had accumulated over the years, but also gave me a little extra security on the financial front.  I will always be very grateful to her for her decision that day.

The ‘last big hoorah’ outing I had was with my dear friend and work colleague, to see a Guy Sebastian Concert.  This was on the Tuesday before Chemotherapy (Chemo) was to start on the Friday.  We had such a terrific time singing along with his songs and just enjoying each other’s company in such a wonderful atmosphere.  When things are tough, or really at any time, a date with this dear woman would cheer anyone up and she certainly did that for me that night, without any effort at all!

As mentioned, Chemo started on the Friday.  Nathan, my youngest son picked me up ready for an 8.00am start and would return later in the day to collect me.  As the hospital was under Covid rules and regulations, no one was to accompany patients into the Chemotherapy Clinic unless there were special circumstances.  So with my Chemo bag packed we set off, and I entered the mysterious unknown.

My Chemo bag held a wonderfully soft, warm blanket given to me by  Nathan’s young boss and family, whom I had never met.  His wife was a cancer survivor and knew what this blanket would mean.  Although I only used the blanket in the clinic a couple of times, knowing it was there warmed my heart and gave me such a cared for feeling.  Just knowing who had given it to me and knowing the experience she and her whole family had gone through themselves, really blessed me.  The bag also held a drink bottle also given by this amazing family.

In the bag too was a Word Search booklet given to me by another dear friend, and also a novel.  I seemed to have a different novel each week! There was also a small journal in which I was to keep a record of my chemo visits, temperature checks and all that was happening in between these visits.  These were the main things, along with some personal bits and pieces.  The bag became a trusted companion and a constant reminder of normality, of people’s care and their kindness.

The first Chemo session took 6 hours.  The first is generally longer than the other sessions as quite some time is spent giving lots of information to go on file as a resource for staff.  It was also an important educational session for me.  

Well, what can one say about the staff?  All were amazing, gentle and caring.  From the doctors, to the nurses, the ward staff, the volunteers and anyone else I have not mentioned – all were ready to explain anything and everything in as much detail as I required and wanted to listen to and just seemed ‘made’ for their roles in the Clinic.  As the weeks rolled by, they along with the regular patients who attended on Fridays, would become like family to me.

Weekly, the nurses would ask the same review questions, checked results of blood tests and when everything was good and ready they would start preparations for the intravenous medications to be given.  I would be attending every Friday for 12 weeks and would be given the medications Carboplatin and Taxol.  Each was to be administered via a cannula which was inserted at each visit into the back of my hand.  Sometimes the nurses would find it difficult to find a suitable vein.  Consequently the insertion of a needle could take 3 or 4 tries to find a ‘good one’.  Usually though a ‘good one’ was found straight away.  Often it just depended on the nurse who gave it and no doubt their experience.

Once settled into my chair I could do almost whatever I wished as long as it was at a resting pace.  Read, chat, ask for snacks and drink, or walk to the toilet with my medications hanging from a pole.  The nurses actually assigned me a chair in the corner and noted this on my file.  When it was possible, which it usually was, that was the chair I was assigned.  From it I had a great view of most of the Clinic, which was set up in a horseshoe shape.  I could see patients leaving and arriving and enjoyed connection with those I had made some contact with.  The amount of time the whole session took was dependent on the smooth flow of the medications, the time in between the administration of medications, of waiting until nurses were available as the clinic was more often than not extremely busy, and what was happening with other patients.  A couple of times when new patients were apprehensive about beginning their treatment, staff needed to deal with this in a gentle, understanding and unconstrained manner.  At times too, there were issues with patients’ treatment.  We had an ambulance arrive one session for a patient whose heart had been compromised.  This proved a seven hour visit for me.  Hiccups like these were just part of the visit and I accepted them as such, knowing that if anything happened to me, I would want the staffs’ attention as well. 

The staff would inform me approximately half an hour before I was to leave that I could contact the person who was picking me up to let them know to come.  Nathan came to collect me after my first session.  I was extremely grateful to him as I was so exhausted and not feeling too well.  Nathan could tell straight away that I had been knocked around a little by the treatment.  I would go home and rest up.  Sounds silly doesn’t it?  I went home to sit after I had spent so long at the hospital sitting, but for some reason it was different in my own environment.  I had tablets to take for the next couple of days which helped with the nausea.  After a number of days I would improve and by the following Friday I would be back to my usual self, all ready to go through the whole process again.

The exhaustion and feeling of ‘being knocked around’ would be a constant after each of my Chemo visits.  Thus I was extremely appreciative of my dear friends and family who took and picked me up from Chemo, then dropped me at the door of my home afterwards. Remember too that this was happening during Covid time and everyone was extremely mindful of trying not to pass on any germs.  One dear friend drove all the way from Drouin for the early morning pickup and drove home afterwards … not just once but twice!!!  Now that’s friendship!!

Each Thursday before the Friday, was ‘Blood Taking’ day.  First thing in the morning I would walk to my GP Clinic and wait in line for the nurse/technician to take my bloods.  The results were sent straight to the hospital as a priority in readiness for Chemo the following day. 

The first page of my Chemo Diary

At my second session I was waiting in the Chemo Clinic’s Waiting Room waiting to be collected, when who should walk in from the Clinic itself but one of the mothers from school.  After a hug and a chat of why I was there, she quickly became a source of comfort and strength at each weekly visit.  She was a volunteer, having been through a similar situation herself, and was present each Friday morning.  I so looked forward to seeing her.  She would often have a snack and a coffee ready for me as soon as I was seated and for me she represented a normality which was foreign in the Clinic situation.  She was attending a church I had attended, so we had lots to chat about each week, apart from the initial connection of school.  We discussed books and Netflix, TV shows, family and general life.  It was such a pleasure to see her doing the same with other patients and being received so well.  I felt extremely honoured that I knew her!

 

It was in the third week of Chemo, three weeks to the day that I started Chemo, when my hair started to fall out in clumps.  I would look down in the shower and wonder what all that mess was and then realise just what it was!  Although I knew this would happen because of the type of Chemo drugs being used (not all Chemo drugs cause hair loss, but the ones used for breast cancer often do), it was still quite a shock to see the reality of it.  Somehow, perhaps subconsciously, I may have thought this wouldn’t happen to me.  Well it did and very quickly!  It was falling everywhere on the floors and on my pillows.  I speedily needed to do something about it!  I contacted my sister Vikki and teed her up to come to my home to be the shaver for a Shave Day.  My other sister Kerry face timed us and sat on the bathroom bench, looking at us from her mobile phone in Canberra.  We certainly had a lot of fun and laughs as together we took this big step in my Chemo journey.  When the job was done and dusted I felt such a sense of relief! 

I searched YouTube for head coverings and of course there was a myriad of types with such a variety of resources available.  I learned how to twist and turn a scarf into a stylish cover using what I had.

I wouldn’t have to go out to purchase anything new.  Through Google I found businesses that advertised their ranges of head cover.  One of these I contacted and after receiving their brochure, I placed an order.

Jas Fashion Pty Ltd is a company based in Sydney, New South Wales.  It is an online supplier of headwear and fashion accessories, with a large range of Chemo headwear, hats and caps all at reasonable prices.  I was so happy with the items I bought from them that I sought their permission to mention them here.  Jas Fashion Pty Ltd happily gave me their permission.  If you have a spare minute, have a look at their website.  You’ll be impressed!  Others from the Clinic were!!

All of the Snoods that I purchased were well made in a soft and easily wearable, fine knit, some almost a Tshirt fabric.  They were extremely well priced and the service was terrific.  I had a few initial queries and these were responded to within a few hours.  When I was in the vulnerable position of not knowing anything about what I should be purchasing and why choose this one over another, Jas Fashions were most helpful and accommodating.

This choice of course is very individual.  Some women choose to bare all and go au natural.  Some choose to wear fashion headwear created from scarves, which look amazing.  Others like me chose another alternative.  For me it was right and I felt most comfortable and confident in my choice.

I was also going through this during winter.  The nights were quite cool so I wore the striped Snoods for bed which provided warmth and comfort.  It really is amazing just how much warmth your own hair provides.  I generally went bare headed at home and wore the others when I was out and about.

My hair didn’t significantly start to grow back until a few weeks after completing Chemo.  When it first started to grow, the hair was stubbly and it stuck into my scalp when I lay on my pillow.  This took a bit of fiddling about, so that I was comfortable.  Funny what you remember!!  
 
Through this time I was reminded of my dad who was bald.  He use to rub his head often and I’m wondering now if it was because he could feel that stubble coming through, or it was to warm up his head.  He often wore a cap outside, and even inside when I come to think of it!

When I saw this photo I realised how much more like my dad I looked now that we had the same hair style!

When my hair fell out, it was not only from my head and eyebrows.  It fell out from everywhere!  As it started to grow back, it grew back … everywhere!  In places I least expected or thought it would ever grow again!!  Oh yay!!

The hair on my head is growing back slowly and at the time of writing has gone from a stylish, pixie looking cut to a thick rug looking coverage.  I wonder how it is going to end up.  It certainly didn’t return a different colour and although there were curls in it at first, it looks as though I will lose those as well as it grows.

Early September saw preparations for surgery occur and the procedure was carried out without a hitch.  The tumour was removed along with two Lymph nodes.  There was a complete response with the tumour’s removal and the tests on the Lymph nodes came back clear.  
I was in remission!!!

In October I went on a trip to Turkey which had been organized well before I had been diagnosed.  All went well and I returned refreshed and happy … and with my first bout of Covid.  Oh joy!!

Once I came back with a negative test, I returned to the gym, which I had suspended early in my cancer journey.  Life was starting to take on a sense of normality again!

Early in November, treatment started for Radiation.  I was to have fifteen sessions over three weeks not including weekends.  Over this time there were continual Radiation Reviews and meetings with the Radiation nurses.  The sessions themselves took little time at all.  In fact, it took longer to park my car, than it did to receive the treatment.  You cannot feel the radiation.  It is quite a safe procedure, and if I had grandchildren, I could have gone to visit them straight after my session.

The only side effects I received were a bit of soreness and tightness around the incision site and slight burning causing discolouration of my skin.  Otherwise all went as to be expected.

Finishing Radiation marked the end of my treatments.  I now have review appointments to attend and of course very regular mammograms for a while.  My Cardiologist has now become my ‘new best friend’ and my remaining link to my cancer diagnosis.
Chemo not only hopefully shrinks the tumour, but unfortunately it kills off healthy parts of the body as well.  It is not selective!  It reeks havoc and it reeked havoc with my body!

Some of the side effects I experienced were of course the nausea and tiredness.  As the weeks went by these became worse.  It has been said to me that the tiredness may take a good 6 months to a year to get over.  The medication given for the nausea was most effective and taken as prescribed did the job but it didn’t prevent the extreme heart burn and indigestion I experienced, especially at night, even though I was eating quite a bit less than I would usually eat.  I needed to avoid tasty food too as this would cause this horrible feeling to be worse.

I also experienced tingling in the lips and hands at different times, cramping, flatulence, hoarse throat, bloating, breathlessness, stomach problems, changes and struggles with my voice, slight nose bleeds, drippy nose, loss of weight, belching, blurry vision, rotten and discoloured nails, neuropathy, skin issues, weakened eyes and Chemo Brain …  which is very real!! 

While this was all going on I tried to keep my life as normal as possible, being sensible to look after myself and appreciate what my body was going through.  
The breathlessness became quite a concern for the doctors and I was sent off for an Echocardiogram through a Cardiologist.  It was found that one of the ventricles of my heart was not pumping the way it should.  Whether this was a pre-existing condition or was from the Chemo, no-one can say for sure, but consequently I am now on medications and under his care. 

The voice continues to let me down at times and I wonder what people think when they try to understand what I am saying.  Hopefully it will right itself over time.  I remain extremely conscious of it!

The nail situation surprised me.  My finger nails changed texture and colour, with a fungus growing underneath the whites.  As they grow out I can cut the fungus off, but at the moment, it regrows.  Hopefully that will settle down too.

My toe nails changed colour and texture as well.  My two little toe nails lifted and I have lost them.  My two big toe nails are rotten, badly discoloured and are lifting but are taking their time in coming off.  I just need to be careful that I don’t catch them on anything.

Neuropathy in my feet continues to be a major issue.  It was in my hands initially but that improved immeasurably within a matter of weeks after finishing Chemo.  I feel as though I am walking on balls of sand paper all the time.  My feet never warm up and I am scared I will walk on something and injure my feet without even knowing.  I am hoping that this will right itself, but as time goes on it doesn’t look like a great outcome.  Many people live with this condition all the time, so I shouldn’t complain.  I just wanted to mention it as part of my story.

My last visit to the hospital ‘to tidy everything up’ was to have a follow up physio appointment when my movement and fluid retention was checked.  And all was good!

While I was writing up this account I was so very conscious that everyone’s story is absolutely unique. 
I know that my story is not everyone’s story.

I know that many women and men have suffered much, much more than I have or ever will, and that their prognosis’ have been not only challenging, but incredibly life shattering.

But I do know that there is always hope!!  

I do know that miracles happen.  Not always the way we would like … but the way that is best for us.

And I do know that while I am in remission, my story will never be completely over!!!

What did I learn during ‘A Year Worth Living’?

I learnt that:
I am a strong woman.
I can cope under extreme circumstances.
I need my community of family and friends.
Without God I would struggle and without prayer I would flounder.
I find it hard to accept help and gifts of love graciously.
Everything is for a season.
It’s important to move on, to step into my future.
It’s important to ‘suck up’ my circumstance and deal with it.
I need to surround myself with like-minded people – those who desire the best for me and for whom I desire the best.
I don’t need to worry about the little things.  There are enough big things to be concerned about.
I need to keep my life in perspective.
Life is worth fighting for regardless of the outcome!

Thank you to my dear family and friends for your unwavering, loving support, encouragement and many kindnesses which have been shown in myriads of ways and much of which I will never be able to repay.

Thank you to all the staff at the Hospitals and Medical Centres I have attended, and to my local G.P. and Cardiologist, for your professionalism and kind care as we’ve negotiated this past year together.

To my sons Matthew, Daniel and Nathan for lovingly being there and, perhaps rather naively, believing that their mum will always cope with whatever comes along!

To my dear sisters and their husbands Kerry and David, Vikki and Sam thank you for … everything!!

And so life goes on and another year unfolds!  What it brings I can only dream, but know that I am dreaming big!!  I am in very good hands!!