The Lump That Wasn’t

I am sure I followed a sequence familiar to many when I found a lump in my breast.

Step 1.      Asked myself is it really a lump? Am I imagining it?
Step 2.      Double check. Yes it’s definitely a lump.
Step 3.      Ask, ‘Am I making a mountain out of a molehill?’
Step 4.      Convince myself that I really should get it checked out.
Step 5.      Have a check up with my doctor.

Step five was when I appreciated the importance of having a skilled and thorough doctor. My family doctor was certain the lump was nothing to be concerned about. However to be one hundred percent certain he insisted that I had a mammogram.

My doctor was right. The lump was nothing to be concerned about. However the radiographers did discover a lump much deeper in my breast tissue that neither my doctor nor I could feel.

I knew it was serious when the radiologist came to tell me I should book in to have a biopsy. The radiologist was surprised at how calmly I received the information. There was a reason I was calm.

A year earlier when I was undergoing surgery and skin grafting for invasive skin cancer I had an insight that the skin cancer was a practice run for something bigger. I had felt it so strongly that I had written it down in a journal. So calm acceptance was there from the beginning, even before the definitive diagnosis.

I booked the first available appointment for the following Wednesday, the 9th of October, one week away.

The World Will Never Be The Same Again

Monday the 7th October. The phone call no one ever wants to receive but is seared in the memory forever. Alex, my son’s soul mate, has been killed in a traffic accident overseas. Hearts break all over the world. Can’t we please turn the clock back? I hug my son, knowing there are no words to console him. I hug my son, heart aching for Alex’s parents and family. I hug my son, remembering the last hug I gave Alex on nearly the exact same spot.

There are some things in life you can never prepare for. Hug those you love.

The Biopsy

I have a pretty good memory. Yet ask me details of my breast cancer treatment and I will often draw a blank. My mind was focused on other things and I choose not to remember a lot of it.

I want my memories to be of people not procedures.

There are still some times in my treatment, though, that have stayed with me because of how I felt at that moment.

When the doctor said I was being brave during the biopsy I could only reply, “My son’s partner was killed in an accident on Monday. I can’t compare this with the pain of Alex’s passing.”

Alex’s passing changed so many people’s world, most of all her family’s and my son’s. More importantly her living changed many lives. It changed mine.

It is often not until someone dies that you discover and appreciate how very wonderful and life affirming is their story. This was the case with Alex. The more I discovered about Alex’s story the more I was inspired to emulate her quiet courage and love of life.

The Diagnosis

Two days after the biopsy I was sitting in my doctor’s surgery. Having the same family doctor for over 10 years I could tell from his eyes that the news was not good. I was not surprised.

I just needed to know what had to be done. My doctor started making phone calls. The surgeon he wanted for me was in theatre so he could only leave a message. My doctor promised to call me as soon as he heard from the surgeon.

Trust your inner self to give you strength when needed.

I went out to the waiting room and sat next to my Mum and told her it was breast cancer. Telling my Mum was difficult; I knew what she would feel. All week I had felt my son’s pain and wanted to take it away from him. Yet there was not a thing I could do to make that happen.

Being a mother is both exquisite joy and piercing pain.

As we walked back to the car my Mum pondered the cause of the breast cancer. I said, “It is what it is. I just want to focus on getting rid of it. I’m not going to worry about what caused it.” Taking that attitude throughout my treatment helped me enormously. I did not waste precious energy chasing shadows. I became very task oriented; what did I need to do to get through this?

When confronted with a challenge focus on what you can do and not on what is outside your control.

Before The Surgery

My doctor gave me a call the same afternoon as my diagnosis to tell me that the surgeon would see me the following Monday. Surgery was scheduled for Tuesday evening. I had four days to get organized and more importantly, for my peace of mind, I had only four days to wait.

The first thing I ticked off my to do list was work. I went into work and told my colleagues. I was fairly matter of fact. I told them I needed surgery and why, and that I did not want any visitors while I was in hospital. There were lots of hugs and well wishes.

Tell people what you need them to do or not to do. It makes life easier for both you and them. We all cope in our own way and you are the only person who can unequivocally say how other people can help you.

On the Monday my sister drove down with her baby boy, and came with me to my surgeon’s appointment. My sister was to be my scribe at this and multiple other appointments. At times another sister or my Mum took over the role.

Take someone with you to appointments, as well as a list of all your questions. You receive a lot of information in a short amount of time at your many and varied appointments. Having someone to take notes and ask any questions you overlook is priceless.

The appointment with the surgeon taught me to be a patient with patience! My sister and I were both puzzled by my surgeon initially discussing everything but the surgery. I was starting to wonder if I had the right surgeon. Then when he was doing the physical examination the penny dropped.

I realised that my family doctor had told the surgeon about the many things that I was confronting at that point in my life. My surgeon had been gently assessing my psychological well being as well as my physical state.

I value the time and effort that my surgeon put into my first appointment. Even though I had been a last minute addition to his surgical list he took the time to know me as well as my disease.

It is important to be treated as a person and not just a disease.

Health Fund Bureaucracy

On the Monday afternoon I went to hospital admissions to finalise the paperwork for surgery the next day. Here I was very grateful for the support and kindness of strangers.

I found out through the staff at the admissions clinic that my health fund had decided the breast cancer may be a pre-existing condition and were refusing to fund the surgery. Phone calls were made back and forth trying to get the fund to comprehend that I had only been diagnosed with breast cancer three days earlier. Frustration brought me to the point of tears.

After insisting the matter be referred to someone senior the decision was overturned and the fund agreed to cover the cost of the surgery. I was relieved but upset at the unnecessary stress I had been put through.

Once the fund agreed to pay for the surgery my pre-admissions appointment went ahead. The nurses and administration staff had been very kind with rearranging appointments whilst I argued with my health fund. In very plain English they gave me their opinion of the treatment I received from the health fund. Their plain speaking and sense of humour helped me refocus on the task at hand.

Value and acknowledge the kindness of strangers. When you have the opportunity, pass the kindness on. There are more good people in the world than bad.

I should point out that when I had recovered from the surgery I wrote to my health fund and told them of my experience. They provided a timely and professional response. They committed to addressing the failures in their processes and I trust that no one else since has had my experience.

Provide feedback and constructive criticism where appropriate. The system will not improve for you or anyone else if you do not.

The Surgery

On the morning of my surgery I had a hook wire inserted into my breast to help the surgeon locate the tumour. This was not one of life’s more enjoyable moments, especially as it was inserted through the nipple! This was followed by a mammogram. That too was an experience. Having a breast with a wire in it compressed between mammogram plates is somewhat more uncomfortable than your standard mammogram.

This procedure became a high water mark for me. Now when I undergo other procedures I rank them against the wire through the nipple experience; the wire usually wins out! It is a moment I laugh about now despite the pain and discomfort.

Try and see the humour in situations, even if it is in retrospect. As a good friend always reminds me “It’s better to laugh than cry.”

Having finished all the pre-operative procedures at one hospital I transferred to another hospital for the surgery. This hospital has a great procedure whereby breast cancer patients are admitted and taken straight to their room rather than a pre-operative area. This reduces the pre-surgery anxiety immensely.

I spent the afternoon sitting on my hospital bed being entertained by my little nephew. The memory of Ben giggling with delight every time his Mum lifted him into the air as she sang to him is my foremost memory of my time in hospital.

Choose the memories that make you smile. Move your focus away from negative memories.

My surgeon visited me the morning following surgery and was very happy with the outcome. He was confident that he had excised the entire tumour and only two lymph nodes had been removed.

I was pleasantly surprised by the lack of acute pain. I was also relieved that I had asked my friends not to visit, as I was able to rest and focus on rehabilitation exercises.

I was very thankful to everyone who went out of their way to fit me into their schedules and to make the various procedures and surgery happen as quickly and smoothly as possible.

Appreciate what others do for you, no matter how small. Any challenging situation is an opportunity to see the good in others.

Bigger Concerns

While I went from diagnosis to surgery my two eldest sons travelled overseas to arrange the repatriation of Alex’s body to her family in the United States. It was a great comfort to me that my eldest son, Joshua, accompanied Nathan on the first part of this heart breaking trip. I also knew that when Nathan took Alex home he would be taken into the embrace of her family.

I have been blessed with three compassionate and loving sons and Nathan showed during this traumatic time what a truly compassionate human being he is. Despite his devastation at the loss of Alex, his focus was on her family and how they were suffering. His selflessness and generosity of spirit inspired me then and inspires me now.

A heart broken but still beating with love and concern for others is an inspiration to all.

My Best Friend

While I was surrounded and supported by family and friends there was one person I really wanted to see. My best friend of nearly forty years, Linda, lived interstate and I felt an overwhelming need to see her. There is no one you can talk with the way you can with your best friend. Great friend that she is, Linda jumped on a plane and came for a long weekend. What a serendipitous weekend it turned out to be.

We spent one afternoon having a long lunch at the local pub. We talked about many things but the conversation turned to people we used to know. I mentioned the name of a friend from my university days. His was a name Linda knew; they worked for the same organisation!

Linda encouraged me to get back in contact with Shane. After some initial hesitation I sent an email to my old friend and that email changed my life.

Dare to reach out to others.

The Oncologist

The day I sent that email was also the day of my first appointment with my oncologist; an appointment that differed from any other appointment to date. My oncologist gave me statistics on how the various treatments would improve my survival rate and told me his preferred treatment plan.

Before this appointment I had done quite a bit of research into treatment options and had some opinions of my own. Our first disagreement was over the need for chemotherapy. We spent some time debating this topic.

My oncologist was clear that he always took an aggressive approach to treatment. However, after telling him I was not going to have chemotherapy he told me that my decision was probably a good one given that I was young and the chemotherapy may lead to leukemia in about twenty years!

Have an open mind in your discussions with your specialists but be persistent in having them address your concerns. This is often the only way to get all the information you need to make an informed decision.

A long Lost Friend

I was very happy when I received a lovely reply from Shane to my email. It was as if we were continuing a conversation from the day before not thirty years ago. Little did I know the influence he was going to have on my life.

Even though we live in different parts of Australia, Shane became a stalwart friend and supporter in my encounter with cancer. It was Shane’s advice to get fit that led to my sunrise walks and so to Sunrise Enigma!

I am sure that Shane does not fully appreciate how his ability to make me laugh; to help me see things clearly; to inspire, encourage and challenge helped me through some dark times.

Friends who make you laugh but also challenge you are more valuable than gold.

Radiation

My radiation oncologist is another doctor who is the embodiment of the Hippocratic Oath. He was generous with his time, knowledge, experience and billing. I was overawed with the time he devoted to my first appointment. I left with a very good understanding of the treatment, the possible side effects and the benefits.

The radiation treatment extended over two months. It was a time when I refined my attitude to cancer and to the way various people approach it. Sitting in the radiation waiting room five days a week gave me plenty of time for people watching and what an interesting group of people my fellow patients were.

There was an unhappy man who was accompanied by his wife every day. He berated his wife and found fault with the staff. Recognising a sympathetic soul, his wife would sit with me rather than endure the constant verbal abuse. Having recently freed myself from a similarly self-interested man I knew how she felt.

Be thankful for having people who support you. Treat them with the same care as they are showing you. What you put out to the world will come back to you.

There was a group of people that I thought of as the “Labels”. This group had given themselves the label of ‘cancer sufferer’. Their identity moved to the one-dimensional. They ‘became’ the disease. For this reason I find labels of any sort a bit depressing. Cancer is a disease that some of us get. It is not who we are. Thankfully most will live through it; sadly too many do not.

A disease does not define a person, either in their living or their dying.

My favourite fellow patients were the ‘smile and get on with it’ group. They were happy to have a chat and a laugh with the staff or other patients.

Smile and the world will smile with you.

The radiation therapy staff always impressed me. Despite treating cancer patient after cancer patient they made me feel like I was their only patient.

I always walked into the treatment room with a smile and greeting for each person. We joked, laughed and chatted our way through the measuring, body marking and lining up that preceded each dose of radiation.

A smile and some humour can lighten everyone’s day.

Chronic pain caused by a car accident ten years earlier made raising my arm for radiation very difficult. The staff did everything they could to make it as painless as possible. I appreciated their efforts more than I could put into words.

A little bit of consideration can go a very long way.

While I lay on the bed with my arm extended over my head, being dosed with radiation I had my own form of diversional therapy.

Along with instigating a countdown of my radiation sessions, Shane joked about the radiation’s effect on me. Playing his commentary over in my head made me smile and almost laugh out loud. As they watched from the control room the radiation therapists must have wondered what was going through my brain.

Find something calming or happy to focus on during treatments or procedures. The time will pass a lot faster and be less stressful.

During the two months of radiation my physiotherapist also treated me for the pain caused by raising my arm. This was fortuitous as Kim is a Frequency Specific Microcurrent Therapy practitioner. Kim used this treatment to help minimize the ‘radiation burn’ on my skin.

The radiation therapists consistently remarked on how well my skin survived the radiation. I was eternally thankful to Kim for this. We were in the middle of a hot Australian summer and not having to cope with radiation burn was a relief.

Explore therapies that can help you cope with treatment.

It was a happy day at the end of radiation when the staff said they never wanted to see me there again!

Saved By A Phone Call

Following radiation I returned to my oncologist for the next step in my treatment. There was a delay of a few weeks while I was treated for a minor infection of my wound site. Once this was resolved I started taking Tamoxifen. Unfortunately I suffered one of the less publicised side effects. It was a side effect that nearly led to me taking my own life.

I had been taking the drug for less than a month when one night I started having a ‘delusion’ for want of a better word. I remember it with frightening detail. My brain was being taken over by uncontrollable thoughts. Thoughts that were debating the best way to kill myself: drowning or overdose?

Then the phone rang. I only had to say hello for Linda to realise that all was not right. I told her I was having really dark thoughts that I could not control. Linda had me call my sister who came over immediately. I have no doubt that if Linda had not called to check on me that night I would not be here now.

When I rang my oncologist’s rooms in the morning I only had to say, “I’ve had a terrible reaction to the Tamoxifen” for the nurse to tell me to stop taking it. My family doctor insisted that I come in every day until he was sure the drug was out of my system and no longer affecting me.

Let me assure you that the thoughts about killing myself were not a reflection of my state of mind. Stopping the drug stopped the thoughts. I have since been told by a number of doctors that my reaction to Tamoxifen was not uncommon.

Be aware there are more side effects to medications than those listed as common on consumer information leaflets. Do not wait until it is too late to tell someone if something is not right.

A Second Opinion

After my reaction to Tamoxifen I chose to get a second opinion. I had formed my own conclusion about future treatment after more research, but I did not divulge this until after I had the second oncologist’s opinion.

We were of the same mind when it came to the benefits of taking hormone inhibiting drugs versus quality of life. It was not worth the loss of quality of life. Not everyone has the luxury of this choice but given the early detection and the treatment already undertaken as well as planned, the survival statistics for me did not change significantly.

When it came to researching breast cancer I used only reputable sources and web sites, and published medical research. There is a wealth of unexpected information in medical research papers. For instance, I discovered that a drug that I was already prescribed (for a tremor) would incidentally reduce the chances of the breast cancer returning as I had been taking it for a number of years prior to diagnosis. Any such discoveries were factored into my treatment decisions.

Take the time to review scientific research if you are able and inclined. There is a lot of information and research that does not reach the general media or even your doctors.

More Surgery

As my breast cancer was hormone positive the original treatment plan had me taking Tamoxifen for two years followed by a hysterectomy.

The purpose of the hysterectomy was twofold: reduce the hormones circulating in my body and eliminate the risk of cancer of the uterus, which increases when taking Tamoxifen. It made sense to bring the hysterectomy forward when I could no longer take Tamoxifen.

I had a total hysterectomy and oophorectomy (removal of the ovaries) just over one year after being diagnosed with breast cancer. Again I was blessed with successful surgery and a smooth recovery.

My biggest concern post-surgery was surgical menopause. I had been told to expect severe menopause symptoms as menopause was brought about instantly rather than gradually through the natural process. Once again something in my past helped in the present.

For the previous eighteen months under the guidance of a nutritionist and dietician I had followed a strict diet eliminating or reducing food that aggravated my digestive system. I had also made the decision five years earlier to remove as much processed food as possible from my diet.

In addition my daily sunrise walks had a remarkably beneficial effect on my mind, body and spirit. I was much fitter and healthier than when I was diagnosed. I believe that these lifestyle changes were the reason I experienced only a few minor menopause symptoms.

Give your body the best possible chance. Take care of yourself: mind, body and soul.

Heading in the Right Direction after a Slight Detour

After recovering from the hysterectomy I returned to my daily walks. It felt good to be back into the routine of life and doing all the things that I loved and that were my release. Photography, walking and bicycling were all at the top of the list. I also had enrolled in a short writing course so that I could indulge a long neglected interest. Life was great.

Keep active and interested in life. Find activities that give you joy and are motivating.

One lovely morning in February I was up quite early and had the beach to myself. Coming up to a large concrete water pipe I stepped up onto it the same way as I did every morning. The only problem was that it was an extremely low tide and I was a lot further out than normal so the section of pipe I stepped on to was covered with algae. My feet slipped out from underneath me and I hit the concrete pipe with force before I had time to register what was happening. I took the brunt of the impact on my shoulder.

After getting over the initial shock I gingerly got to my feet. I had difficulty moving my shoulder. I looked around. There was not another soul on the beach. I resigned myself to the trek home. I must have looked a sight covered in wet sand and algae and dripping blood from numerous oyster shell cuts.

It was the longest walk home. By the time I made it back I realised I had done some serious damage. The pain was considerable so I called an ambulance.

I found myself in a familiar situation, on painkillers in a hospital bed. I could not stop the tears flowing. I felt ridiculous, as I had been through much worse. The nurse made me laugh when she said, “it’s because this one is down to something you did and it’s something that seems so silly in retrospect.”

Try to keep perspective and laugh when the opportunity presents itself.

I had a severe fracture of my collarbone. Luckily the Orthopaedic surgeon thought that despite my trek home the break had not moved enough to warrant surgery. Cue one big sigh of relief.

The end result was more time off work with my arm in a sling for a few weeks, along with a lot of rehabilitation. I learnt to do things single-handed. I also rediscovered public transport. My wonderful family and friends gave me lifts and took me shopping but for my own well-being I needed to be as independent as I could. Besides, catching buses gave me a lot of time for people watching!

Find the balance between independence and accepting help that works for you. Be prepared to admit that there are times when you need to rely on others.

I found it harder to bounce back and keep a positive mind set with my broken collarbone than with any of the cancer treatments.
I learnt the reason for this.

While juggling the many challenges I faced I had intermittently consulted a psychologist. Michelle explained the internal processes that went with all the challenges I faced. With the broken collarbone every one of my regular outlets had been taken away. I could not take my morning walks or photographs and I definitely could not ride a bicycle!

Do not be afraid to get professional help when going through life’s challenges. We are not born with an instruction book and there are people who can help.

My Oncologist and I Part Company

Two days before I fractured my collarbone I had my final appointment with my oncologist. Yet again we initially did not agree on my treatment plan.

My oncologist wanted me to take another hormone inhibitor for five years. I disagreed with him and told him that given the steps I had taken I did not want to give up my quality of life for such a small benefit.

He was not happy with my decision and said to me, “When the cancer comes back…” I had previously come across specialists with my skin cancer who used scare tactics to try and frighten me into using their services so I was not unprepared.

I told my oncologist that I had not made an emotional decision but one based on research and statistics. He said, “Well let’s look at the statistics.” He opened my file and started going through it and realised that I had made a very good case for my decision and his voice trailed off.

The next thing my oncologist told me was that all I needed to do now was to have my annual tests and checkups with my surgeon. He walked me to the receptionist desk where he said with a big smile that, “Mary-Anne doesn’t need further treatment. She is all good.” And on that happy note we parted company!

Do not assume that your specialists always know best. Be guided by their knowledge and experience but be aware that sometimes they need prompting to remember that every case should be assessed on its own merits. One size does not fit all!

You Are An Individual

Everyone’s cancer experience is different. We all respond and cope in our own unique way. Learn from other’s experiences but do not think that their road is exactly the same as yours. The same applies to any of life’s challenges.

You are the only one walking in your shoes on your road!

Being Resilient

My family and friends were intrinsic to my resilience. They helped me with the practicalities of living and they listened when I needed to talk. They were honest with me. They respected my decisions in regards to my treatment and when I wanted to be alone.

They offered me their help, their time and their presence, be it physically or on the end of the phone. While I did not take them up on all of their very generous and loving offers, they lifted my spirits. I knew I was not alone.

When you need to, lean on your family and friends. Valuing and appreciating their kindness does not mean accepting every offer. The benefit is often in just receiving the offer. Let them know this.

Looking Back & Looking Forward

Looking back now there is so much I do not remember. I cannot, for example, tell you how I broke the news of my diagnosis to my family and friends (apart from my Mum and work colleagues). Losing Alex that week put everything else into perspective.

Two years on I can tell you that I am grateful for all the good in my life and most importantly for all the people in my life. I have so much to look forward to.

I hope I suitably honour Alex when I try to emulate her quiet courage and her love of adventure in how I live my life.

With each sunrise I am reminded that I have been given the gift of another day. I am truly blessed.