"It all started in January 2009, I got home from work one afternoon and my wife asked me to feel her breasts, and being the good husband that I am, of course I obliged! She told me that she didn't want to pre-empt what she thought she had felt and wanted to know if I could notice anything.
"It wasn't big, but there was a noticeable lump in the left breast, not far from the nipple. I wasn't too concerned and told her that it was probably nothing but we agreed that it should be checked anyway. After a visit to the local GP we found ourselves in the waiting room of a radiologist. Julie's name was called and we walked into a cool darkened room. As the scan was done I watched the monitor intently trying to make sense of the strange images on the screen. It was easy to see; a dark, clearly-defined area in among the grainy image everywhere else. I had had ultrasounds before and seen fluid filled areas that looked very similar, so in my head I had already decided that this was just a cyst and nothing to worry about.
"It was a long weekend and we went away to the Tour Down Under cycling race and tried not to worry about it. Statistics say that 9 out of 10 are nothing to worry about, and my wife was only 38 so it's all going to be good, right? Wrong.
"I was at work on the Tuesday morning when Julie rang me saying she was in the car at the hospital and had picked up her results. She felt scared and didn't want to open them. I encouraged her to read them to me over the phone, with absolute confidence that it was going to be good news. I don't remember much of what was said, but I do clearly remember her voice breaking as she read the words 'signs of malignancy.'
"I left work immediately and headed home to be with her. What do you say to your wife, or anyone else, at a time like this? I had no idea; we just held each other and cried. My head was spinning with a thousand different scenarios going on. Is my wife going to die? How do we tell our children? How will they react? Will I be able to keep my job if I am the sole caregiver of our children? Will we lose our house?
"The next week was a blur. We lived a 5 hour drive from any capital city and there was no specialist cancer treatment in the region. We went to see the local doctor who had initially ordered the ultrasound and were referred to a surgeon in Adelaide. My wife had done her homework and found a specialist she wanted to see and the referral was done for that person. A couple of phone calls later we had an appointment and less than a week later we were off.
"I can't describe the feeling of driving for 5 hours and expecting to get the worst possible news. There wasn't a lot said in that time, the radio was turned up as a bit of a distraction but what was said were some of the things we needed to consider. How do we break the news to our families, which of our friends do we tell, how well known do we want this to be?
"When we got to Adelaide it was 42°C and even though the waiting room had air conditioning it was very uncomfortable sitting there. Everything seems to have a new perspective when stress kicks in, I found myself examining the name plates on the doors of all the doctors, the exposed timber beams in the waiting room, the string of small down lights supported by two wires, the artwork on the walls. Both of us picked up a magazine from the table and pretended to read them, although both of us saw this as a distraction of some sort.
"The time came that we both dreaded but also knew we needed to face, the doctor came out and called my wife's name. This was when I needed to be strong, not show fear or weakness and be the rock that Julie needed.
"The specialist was an older gentleman with a soft calming voice and an air of confidence. He greeted us warmly and asked us to take a seat at his desk. We sat in silence while he looked at the report from the ultrasound and checked his computer for the results of a blood test done the day before.
"Looking across the desk he asked my wife to come to his examination table and remove her clothing from the waist up. I came around in an attempt to give support. After a quick physical examination of her waist and shoulders he felt the lump in her left breast and explained he would need to do a fine needle aspiration to have the lump tested. Using a small ultrasound and a long needle he proceeded to almost violently push the needle into the breast whilst withdrawing what appeared to be only blood, then spread it on a microscope slide and put another slide on top.
"I don't know if it was the heat of the day, the emotion of what I had just witnessed or a combination of both but I started to feel light headed and needed to sit down. I quickly made my way back to the chair at the doctors' desk and took a few deep breaths. I was joined less than a minute later by the doctor and shortly after that by my wife. It was explained to us that we would need to wait for the results of the FNA but he was almost certain given the ultrasound and his examination that it was breast cancer. We were then told that at this stage the 5 year survival was greater than 90%.
"Just over 5 hours later and eternally grateful for a car with good air conditioning, we pulled into the driveway of our home. It's a strange feeling to have to try and be as normal as possible while your heart is being torn apart. We didn't need to wait too long and got the phone call the following day that the lab results had confirmed that it was cancer and we would need to return to Adelaide so Julie could have surgery.
"The following Monday we made the long 5 hour trip, and just like the last week, it was over 40°C. Once again we were in that same waiting room although this time we needed to come up with a plan of attack, the enemy had been identified.
"The doctor at this appointment was more matter-of-fact and explained that the next step was a series of other tests to see if the cancer had spread. A full body CT needed to be done along with a bone scan and we would get the results in the morning. Of all the times that are stressful, waiting for test results is the worst.We stayed at a motel run by the cancer council not far from the hospital and got pretty much no sleep. The dread of the appointment the next morning was far worse than the first appointment with the specialist.
"We were blessed and extremely relieved to be told that there was no sign of cancer in the bones or any organs. It was also at this appointment we were told that surgery would be the following day and there was one more test to be done first. A radioactive dye needed to be injected into the breast near the site of the tumour, this was to identify which lymph nodes drained this area of the breast so that during surgery some could be removed and checked. To have this done, the nurse came out with a stainless steel syringe and wearing hazchem gloves. Once the injection was done we were told that my wife should not be near young children for the next 6 hours. Two hours later the scan was done and then we went out for a meal before she needed to start fasting in preparation for a lumpectomy to be done the following day.
"In the morning we went through all the usual protocols of checking into hospital, confirming name and date of birth time after time. We were taken to a private room that would be my wife's home for the next week.
"As the time got closer for surgery the anesthetist came in and did his checks and the nurses came in and gave Julie a pre-med. There was a feeling of calm confidence that this would be the silver bullet that would make this nightmare go away. The time came and the theatre staff arrived to take my wife for surgery. I walked with her until I wasn't allowed to go any further and quick kiss and 'I love you,' then my wife was wheeled away between swinging doors.
"It really wasn't that long before I got the phone call that the surgery was complete and my wife was in recovery. Not long later the bed was wheeled back in and there she was looking happy and as comfortable as you can be post-surgery. We talked for quite a few hours, waiting for the surgeon to do his afternoon rounds.
"When the surgeon walked in he looked slightly concerned and said, 'I've got mixed results.' On the bright side, the 5 lymph nodes that were removed were all clear and it appeared the cancer hadn't spread. The problem was that when the tumour was removed there was not enough clear margin and more surgery was needed the following day to completely remove the breast.
"Julie's eyes appeared to bulge and instantly filled with tears. The doctor put his hand on her shoulder and said, 'I'll give you some time and come back later.' I really can't remember how long we just hugged for, maybe 10 minutes, maybe an hour, but we just hugged and cried. Then almost unexpectedly my wife took a deep breath, looked me in the eye and told me she was fine with it and she just wanted it (her breast) gone.
"When the doctor did come back there were no tears, no obvious fear, just a steely resolve to do whatever was needed to move forward. A mastectomy was planned for the following day and my wife would be 'first cab off the rank.'
"The hours before surgery were identical to the day before, but this time there was no emotion. I walked that same path again, following the hospital bed as it made its way to the operating theatre. Another quick kiss and 'I love you' and the bed disappeared behind the same swinging doors as the day before. This time I just kept walking, out of the hospital into the streets outside. It was a hot day, but not scorching and I watched people come and go from the hospital and wondered what their story was. Some were obviously chemo patients, others looking perfectly fine just walking in with an overnight bag, like they were checking into a motel.
"My thoughts were broken by my mobile phone ringing, it was the surgeon telling me that the surgery went well and once again my wife was in the recovery room. I asked if that was it, all the cancer was gone, and was told that as far as he could tell all the cancer was removed. I felt a wave of relief wash over me and had an almost euphoric sense of joy. I quickly went to the room to wait for Julie.
"When the bed was wheeled back in, the same smile, the same almost relaxed confidence was there and I could feel life starting to get back on track. Once again we talked as we waited for the afternoon visit from the surgeon.
"At almost exactly the same time as the day before, he appeared at the door and walked in and this time his face had a relaxed smile that instantly brought a level of confidence into the room. 'The surgery went very well, but we'll need you to stay for a couple of days to keep an eye out for infection,' were his words. We looked at each other, smiled and told the surgeon that was fine.
"After three more days in hospital, the amount of fluid draining from the mastectomy had reduced to a point where the drain could be removed and we could plan to go home. One more visit from the surgeon and a follow-up appointment booked, we packed my wife's bag, got the required medications from the pharmacy, did all the appropriate paperwork and checked out of the hospital.
"Three weeks later we made the long trip to see the surgeon again to discuss what next. As we sat in the doctor's office, we listened intently to the information he gave us, HER2-negative, PR-negative, ER-positive. We were told that this was good news as it meant that treating this type of breast cancer was possible with hormonal therapy. The bad news was that the tumour was grade 3, meaning it was aggressive, but we had real hope that the surgery had been fully successful and it was beaten. The surgeon then referred my wife to an oncologist who suggested that a course of chemotherapy may be beneficial to kill any rogue cells that may still be in the body.
"A few weeks later we made our way to a beautifully restored turn of the century building that once was a hospital. The nature of what was to come was obvious as soon as we stepped in the door. There, neatly along one wall, was a large rack of head scarves, wigs, bandanas and all other types of head coverings.
"We sat patiently in another waiting room until we were called in. The oncologist was a small framed man with a polite, but clinical, nature. He talked to us about the chemotherapy drugs that would be administered and what side effects could be expected. The only deviation from medical talk was an attempt at humour that 'hair loss occurs in approximately 100% of patients.' On the bright side, the regime was only to be one cycle, once every 3 weeks, five times. Once the consult was over, we made the appointment for the first session, got back in the car and made the 5 hour trip home.
"There is a fundraising event in Australia called 'Shave for a Cure.' This was mainly targeted for blood cancers but given Julie was going to lose her hair anyway, we went to an event and I watched as my wife sat on stage with one of her friends, holding hands as both had their heads shaved to a number 1 clipper length. It was then my turn and I was joined by our youngest son, who at eight years of age showed great courage to sit with me and have his head shaved. I kept my hair at the same length for the duration of the treatment.
"One of the advantages of living in a rural area was a government scheme that almost fully paid for airline flights for certain medical treatments; and given that my wife needed to be home within 2 hours of chemotherapy, we met the criteria and could fly to and from treatments.
"Chemotherapy was not what I had expected it to be. I had visions of bed ridden patients in separate rooms, but was met with a large room with reclining chairs set out along the walls, each with a small chair beside it for a caregiver. As my wife took her place in one of the chairs, the level of anxiety increased; you hear so much about the terrible side effects of treatment and we both wondered what the result would be.
"A nurse came across with a trolley and after giving us a brief on what to expect and going through the name and date of birth again, put in a catheter and started a saline drip. After a short time, the nurse returned with an enormous syringe full of a red liquid, this was slowly injected into the drip line over 20 minutes. This was the drug that would make Julie's hair fall out and we were warned that it would also make her urine red for 24 hours. Once this was done, another drug was brought over in a thick black plastic bag, this was a separate drip, and this was the drug that could have the horrible side effects.
"Once the second drug infusion was complete, and a saline flush had been done, the catheter was removed, the next appointment was confirmed, and we could go home. We got a taxi ride to the airport and a short time later boarded the plane for a one hour flight home.
"It wasn't long into the flight that Julie said that she wanted to close her eyes for a while. As I watched her try to sleep, I could see small beads of sweat form on her forehead and her skin become noticeably paler. This was to become a recurring theme after each treatment but it was something to which I could never become comfortable. It really is a strange feeling to know that what is attacking the cancer is also attacking healthy cells as well.
"We got home mid-afternoon and Julie went straight to bed. I tried to keep the afternoon as normal as possible for our boys, being dad, helping with homework, and getting tea ready. Once the boys were in bed, I had a shower and got ready for bed myself. Almost as soon as I got into bed, Julie told me that she felt sick and was going to the bathroom in case she had to vomit. I checked regularly to see if she was alright until sleep eventually took over.
"The alarm sounded for me to get up and go to work, and the other side of the bed was still empty. I checked that bathroom to find my wife sleeping on the floor near the toilet; I gently woke her and helped her into bed.
"The next treatment was very similar, but the evening was not quite so bad, and this was the case each time, to the point that after the fourth treatment in the evening she spent an hour in the gym! The last treatment was a different story.
"We got home after the plane flight and the tiredness was worse than any other treatment. There was no nausea, just total and utter fatigue. We talked about if we should go to a doctor, but Julie made it clear that she just wanted to sleep, that emotionally it had now taken its toll and she was worn out.
"The next four months started to bring some sense of normality back to our lives. It was about this time that Julie told me that she wanted to have her right breast removed so that the chance of reoccurrence was reduced. I made it clear that I fully supported the decision and that her health was the number one priority.
"The same surgeon performed this operation and once again we waited until the drains could be removed and we went home to start our lives again.
"During the next year, Julie looked at reconstruction versus prostheses and eventually decided to go with an expander reconstruction. This procedure involved having inflatable implants put in under the chest wall muscles and making regular visits to the surgeon to have fluid injected into them to slowly expand the muscle and skin to allow for permanent implants. This process took about 6 months and time was needed to heal before a nipple reconstruction could be completed.
"Julie continued with the reconstruction process until it was complete and at last we felt that we could start moving on with our lives and planning for the future without more cancer treatments.
"It was less than 3 months after the reconstruction was complete that our eldest son said something felt different in Julie's left shoulder when giving her a massage. She asked me to check and there was no doubt that there were lots of inflamed lymph nodes behind the collarbone in her left shoulder. I tried to say that it was probably just an infection somewhere and nothing to worry about.
"Julie rang to make an appointment to see the original surgeon and he wanted my wife to see him the next day. We both tried to keep a positive outlook, but both deep down had the feel of 'not again.'
"Once the surgeon had felt her shoulder he looked concerned and said that he wanted to operate the next day to remove some of the nodes to have them tested.
"Another unplanned overnight stay, another night of waiting and in the morning another hospital check in. The surgery didn't take long and soon Julie was back in the hospital room. This time there were no drains and we could go home that afternoon. We were told that we could expect the results the following day, so another night of waiting for test results. The following day I got a phone call at work from Julie saying she had just heard from the surgeon. Her voice was quivering as she explained that all the nodes removed contained cancer and it was the same cancer as before, it had spread.
"Once again we had to make the long trip to find out what was next. This time there was to be a change in hormonal medication and a course of radiation therapy. It was at this time that the tyranny of distance became very real. Five minutes of treatment a day for 6 weeks meant that Julie needed to stay in Adelaide for the entire six weeks and wouldn't be coming home until the treatment was finished. Both of our sons spent a week staying with her, but being separated from a normal family environment took its toll and it was a very emotional time.
"Follow up scans and tests showed that the radiation therapy had been successful and it appeared that once again Julie was on top of the cancer.
"It was about this time that I started to see new emails appearing from places I had never heard of. Emails from Dr. Mercola, Gabe Mirkin, Doctors are Dangerous, etc. became the norm and started filling our inbox. I asked what it was about and was told it was just looking at what else was available that was more alternative. I asked if it meant that she was going to stop her ongoing hormonal treatment and she told me she didn't think so.
"The following year I signed a contract to start a new job in another state. This would involve selling our house, packing up our belongings and starting again. There were some big advantages of the relocation, much nicer weather and being close to a capital city.
"At this time Julie's normal appointments were every 3 months following a blood test. In November we made what was supposed to be our last appointment in South Australia. We sat in the consult room as he explained that the cancer markers had risen to a level where more tests were needed to see if anything else would show up.
"That same feeling of 'not again' became almost overwhelming. Once again we needed to stay overnight so that scans could be done the next morning and we would get the results the next afternoon.
"Another sleepless night and we were back in the radiologists rooms waiting for another set of scans. After the scans were completed we drove into the Adelaide hills and went out for lunch. Conversation didn't flow much as we sat and held hands. Time seemed to go slowly until we needed to drive back to the hospital and get the results. We sat in a private waiting room until the surgeon came in with scans in hand. He told us that they hadn't been reviewed by a radiologist yet, but it was clear that the cancer had metastasized and was now in her spine. There were a couple of quick phone calls and we were told that we could go and see the oncologist straight away and the surgeon would come with us.
"We were supposed to be moving interstate in 4 weeks and this had just hit us between the eyes. The oncologist managed to pull some strings and we had an appointment to see the radiologist the next week to organise radiotherapy.
"It was planned that a five day course of intensive treatment would be done and we would just need to amend the plane tickets so that Julie and our eldest son could fly up 5 days later than originally planned.
"It was during this time that Julie started looking for an oncologist in Brisbane that had more alternative views. She found one that she believed would be more accommodating of her views and arranged to have all of her records transferred to the clinic in Brisbane.
"Once we had all relocated to Queensland and settled in, we made the first trip to a new hospital and a new oncologist. This time it was a lady who explained her views on treatment for Julie, and that it would include both oral and intravenous chemotherapy at some stage. She also explained that as the cancer had spread to her bones, it was now stage IV and treatment was now palliative not curative and was aimed to extending life and improving quality of life.
"As we left, Julie told me how disappointed she was that the new oncologist still had very mainstream views on cancer treatment and didn't discuss any alternative treatment protocols, but for now the markers were stable and there was no need for any change to treatment.
"During the next 4 months there were numerous complementary treatments tried; supplements, juicing, fasting, cottage cheese and flaxseed oil, high dose vitamin C, etc. Each with its own promises and each with its own extravagant price tag. A quick search of the internet will bring up hundreds if not thousands of 'cures' for cancer, each playing on the fear of the sufferer, each with headlines about 'big pharma,' government conspiracies, 'follow the money.' I found it ironic that so-called 'natural' treatment was more expensive than mainstream and always had a caveat that the information was not medical advice. This was then clarified that it had to be put in otherwise the FDA would shut them down.
"We went back for check-ups every 6 weeks and slowly but surely the marker numbers were dropping. The number got down to 32, below 30 being normal, and we were ecstatic. Maybe at last this was under control. Then the next test the marker was 42, then 56….
"The house we were renting in Queensland really didn't suit our needs, so we started house hunting for somewhere to call home. After a month of searching, we found somewhere that we both loved and signed a contract to buy.
"We had planned a cruise for our family in July and all looked forward to getting a break from what had been a very chaotic 6 months. It was during the cruise that Julie told me she couldn't do it anymore and when got back she was going to tell the oncologist that she was going to try a protocol that she had found online that had promises of a cure for stage IV cancer. I told her that I didn't feel the same way about alternative treatment, but would support her in whatever she felt was best.
"When the time came for Julie's appointment, she told me she couldn't go and asked if I would go by myself. I agreed and made my way to the hospital to tell the oncologist that Julie wouldn't be back and that she was going to try alternative treatment. I explained that Julie had tried surgery, chemotherapy, more surgery, radiation, hormonal treatments and the cancer was still progressing and that Julie had told me if she was going to die from cancer it wouldn't be lying in bed sick from chemo drugs, but enjoying her last days in comfort. It was made clear that metastatic cancer without treatment can be a slow and painful death, but if that was her wishes, then that needed to be respected.
"A couple of weeks later I watched as my wife threw her 2 packets of hormonal therapy tablets in the bin and said she would never need them again. This was also when the settlement on the house we were buying went through and it was time to start packing.
"Over the next month of packing and moving I watched my wife go from a vibrant, healthy looking person to someone who struggled to bend over to pick something up off the floor and became increasingly tired. Moving house was difficult and made worse that Julie was not only sick, but depressed that she couldn't do more.
"As we set-up house the tiredness continued to increase, she developed a noticeable hunch, her stomach started to bloat and she was in increasing pain that made day-to-day living a real struggle. Now I found myself secretly on Google looking for what could possibly be the cause and becoming increasing distressed at what I was reading.
"I began to steel myself that the end was coming, and maybe it was coming fast.
"There were days when things would be almost normal, the pain wasn't too bad and the tiredness wasn't overwhelming. But there were also days that were ever-increasing where the pain became nearly unbearable, every bump in the car was met with a slight gasp. Emotionally it was taking a terrible toll. There were many times Julie would say that our family would be better off if she was dead, she would sob as she explained that there was no fight left and she didn't care anymore. It all came to a head one night when both of our bays and I decided to make a special tea for her. We set the table with candles and the best dinner setting and had garlic prawns with tabouli salad, one of her favourite meals. Julie sat there and ate it, but there was no happiness, no emotion at all. Our eldest son said that maybe on Friday night we could have a family night and mum could pick a movie for us to watch. 'What do you want to do on Friday?,' he asked as he looked across the table at her, she looked up and quite impassively said, 'I want to be dead.' I didn't know if I should be angry or sad, but just stood up, cleared the table and told the boys they could go and play computer games.
"There was an American doctor in Brisbane for a short time that Julie wanted to see and he had alternative views for cancer treatment that aligned with her beliefs. He suggested that she have a blood test to see what the marker numbers were so they knew what they were working with. We went to the local GP and organised to have a blood test and were told to come back two days later to get the results.
"The following morning I got a phone call at work telling me that I needed to get Julie to hospital and I needed to do it now. The doctor explained that he had spoken to the oncologist and they both agreed that there was no time for delay, a room had been booked and she needed to be admitted as soon as possible. When I told him we had an appointment to see the oncologist on Monday to discuss radiation for back pain he told me that we couldn't wait that long. I asked what the marker numbers were and he told me he didn't know, but what he did know was that the calcium level in Julie's blood was so high it could be fatal.
"The doctor asked if he should ring Julie and I told him it was better if I did. The first two times I rang it went to message bank, the third time Julie answered. 'What's wrong?,' she asked innocently, and as I proceeded to explain the information I had received that morning, her voice started to crack and I could hear the tears. 'What are they going to do?' I couldn't answer because I didn't know; all I knew was that she needed to get to hospital and she needed to get there as soon as possible. I told her that I was on my way home and she would need to pack an overnight bag. She asked about our boys and I told her that I had already organised my parents to pick them up from school.
"We drove the 45 minutes to the hospital; there were no tears, just a strange feeling of disassociation. I asked if she would agree to mainstream treatment and she said she wasn't sure, she needed to know what was happening first.
"Here we were again, checking into a hospital, going through the name and date of birth information, only this time we didn't know what was next. Once the check-in was complete, a young nurse escorted us to the oncology ward on the first floor of the hospital and to a private room that had a nice view. The nurse did the first round of temperature, blood pressure, and respiration and recorded the information on a chart in a large green folder.
"About an hour later we were still waiting for the oncologist to arrive. 'It can't be that serious if we have to wait this long,' my wife said as she sat on the side of the hospital bed. Then, almost on cue, in walked the doctor, folder in hand and an impassive look on her face.'How are you?,' she asked looking at my wife. There was no judgement in her voice, just genuine concern. My wife explained the pain she was having and the tiredness and asked what the recommended treatment was. The doctor then laid the cards on the table and told us that the cancer was attacking Julie's bones and depositing calcium into her blood at a rate that her kidneys couldn't cope with. The treatment was an intravenous infusion of a drug that hardens bones followed by a large amount of fluid by drip to try to flush her system.
"Julie agreed to the infusion and saline, so a short time later the trolley was wheeled in and the drip was setup. We were told of the possible side effects of the bone hardening drug, but truth be told neither of us were prepared for the severity of them.
"By Friday morning Julie had started to develop a fever that they were having trouble keeping down.This was made worse that she was also booked in to have chest and abdominal CT scan as well as a full body bone scan that morning.
"I walked with Julie as she was taken in a wheelchair to the radiology department of the hospital. She had two blankets on but was still shivering so hard that it was causing significant pain. I stood behind her and rubbed her back, trying to help but feeling completely useless. 'Be prepared for bad news,' she told me as she was wheeled away to have the CT scan. I just smiled the best I could, but truth be told, I had been prepared for bad news for a few months.
"About twenty minutes later Julie was wheeled back into the waiting room and told she would need to come back in a couple of hours for the bone scan. 'My kidneys have nearly stopped working,' she said as she looked up with tears in her eyes. It must have been a look of questioning on my face because she proceeded to tell me that the CT scan didn't show much because her kidneys couldn't process the dye that she had drank in the hour preceding the test.
"Two hours later and we followed the same procedure only this time it was for a full bone scan. This time I was allowed to sit in the room as the test was done. I looked at the screen which was full of little white dots; on that screen my wife of 20 years broken down into an electronic signal. I concentrated and tried to make out what I was looking at. I could make out the outline of the bones in her body, areas of lots of white, areas of dark, I didn't know what was what, but was pretty sure that one of the colours was bad.
"We spent the rest of the afternoon in the room, waiting for the doctor to deliver the results. We were both expecting bad news; it was just a matter of how bad. Observations were being done hourly and the fever was fluctuating, more medication and the fever would go down, then sure enough an hour later it would return.
"I sat there in silence secretly Googling on my phone 'prognosis of hypercalcemia.' I couldn't quite believe what I was reading; patients needing hospitalisation for hypercalcemia had a 50 percent mortality within 30 days. My heart sank; I didn't know what to do or say, so I just sat there and waited for the doctor to return.
"When the doctor returned to the room, she explained to us that she didn't have the scans with her but she had seen the results. There didn't appear to be any cancer in the organs, but it had spread to a lot of her bones. There were 5 compression fractures of the spine and 2 broken ribs, there was also significant disease in the pelvis and femurs that would need investigation.
"The relief of the organs being clear was huge, but then came the next challenge. The treatment that was advised was chemotherapy with Taxol. I knew that the decision had to be Julie's and there was no point in trying to put pressure on her to have chemo.
"I was overjoyed when she told her oncologist that she would start treatment and see how she went.
"The treatment was to be 3 to 6 cycles of Abraxane, each cycle being 3 weeks on, one week off starting in 2 weeks' time. We were told that this treatment was not like the first round of chemotherapy that Julie had endured. Curing the disease was no longer an option, so a less aggressive treatment would be used to try to control the cancer.
"On Fridays, prior to Monday treatment, Julie needed to have a blood test to keep track of normal organ and blood function with cancer markers being checked once per cycle.
"The first Monday of treatment, we made the journey to the hospital, firstly for an appointment with the oncologist and then for Julie to start chemo. Sitting in the waiting room was very unpleasant; it was the first time Julie had been back since she made the decision to stop mainstream treatment and I could see the internal battle she was having with where she was.
"When Julie was called, we made our way into the oncologist's consulting room. We were told about the possible side effects of the chemo, hair loss, possible nausea, fatigue, etc. and also the known benefits with cancer like Julie had. We were also given the cancer marker number, 282, this had been at 57 when she decided to stop treatment, so it had doubled and redoubled in that time.
"After the appointment we made our way to the day oncology suite at the hospital where Julie needed to do a mountain of paperwork prior to her first treatment. We waited for her name to be called and soon enough we made our way into a neatly decorated area with large recliner chairs spread out along the walls.
"The treatment was pretty much uneventful and when finished we walked back to the car and drove home. That evening was not so good….
"The tears started to flow as the situation of where her life was at became clear. She looked up at me, her eyes swollen and told me that she knew the chemo was just speeding up her death and that she was only doing it because it was what I wanted.
"It was to be one of the hardest times for me emotionally. Julie told me that she had lost respect for me and felt that I hadn't been supportive of her. Anger started to boil in me when I asked what more I could have done. She said that she sees support being me helping her find an alternative treatment. I told her that I loved her, but I can't change who I am. I had been to every appointment, every treatment, done everything possible so that she had the finances to try what she wanted and I was being told I wasn't supportive.
"Weeks went by with the treatment continuing. As expected, Julie's hair fell out, but nausea wasn't a problem; more of an issue was the steroids given to stop the nausea. Julie wouldn't sleep on Monday night and was a ball of energy on Tuesday only to be left flat until Saturday, leaving Sunday the only semi-normal day prior to the next treatment.
"At the start of each cycle we got the updated cancer markers, 121, 80, 51 then 48. The oncologist said that the marker may never go back to below 30 and she was hopeful the chemo was keeping it stable. It was at this time the decision was made to go past the 6 cycles and continue with the Taxol chemo, 'while it's working.'
"Two weeks into the 7th cycle, Julie had sore shoulders after doing housework and I offered to give her a shoulder massage. Almost immediately I could feel the lymph nodes in both shoulders were large and hard. I asked if she was feeling OK and if she thought that maybe she had a cold. Julie said she felt fine and asked why. I told her about the lymph nodes, she felt them and I could see the look on her face and the tears start to well.
"Another set of scans was already booked for the following Monday, so she decided to wait and see what they said. To make matters worse, the oncologist was called away to an urgent interstate matter and we would need to wait an entire week to get the results.
"The Sunday prior to getting the results was Mother's Day and Julie said she wanted to go on a bush walk. We went to a path we had walked many times, about 6km around some beautiful mountains. Only this time was different, what was normally a moderate walk was really hard work for her and we needed to stop four times for her to get her breathing back under control.
"The day came and we headed off to the oncologists office, full of fear, but still hoping for OK if not good news. As the patients went in and out in front of us, we waited until the time came for Julie's appointment. The oncologist picked up the scans from the reception desk looked at us and said, 'I'll be with you in a minute.' That minute was closer to 5 and during that time, Julie whispered to me, 'It's bad.' I didn't say anything, but truth be told I was thinking the same thing.
"When we finally were called in, the opening question was obviously loaded: 'How do you feel within yourself, are you in any pain?' Julie explained that the fatigue was getting worse, but apart from that she felt OK. The oncologist then explained that the Taxol was no longer working, the blood markers had gone from 48 back up to 86, the bone scan revealed increased cancer activity in the skull, spine, sternum, shoulder blades, ribs, pelvis, and femurs.The report in the envelope described it as extensive metastatic skeletal disease.
"Julie agreed to try a new chemo drug that would start the following week. As we were driving home, she told me that this is the last one. 'When this chemo stops working, I'm doing my own thing.' I told her that I completely understood and was pleased that at least she was trying one more. She then told me that if she dies from cancer she wants it to be quick, she doesn't want to spend months suffering. I made her promise that if it got to that, that she would accept whatever palliative drugs existed to stop the suffering, and she agreed.
"The following week we found out that the lady who sat beside Julie at all her chemo treatments with Taxol had passed away on Saturday. This seemed to bring about a renewed vigor to look for complementary and potentially alternative treatments. There were dozens of websites open looking at hyperbaric treatment, vitamin C infusions, ketogenic diets and hemp oil. By this stage, I was beyond arguing, and when Julie said she was going to try to access her superannuation money to try treatments I supported her.
"At the next chemo appointment, Julie raised with the oncologist the possibility of having a form signed to allow the access to the funds; the oncologist said that she would be happy to sign the form that stated in her professional opinion Julie had less than 12 months to live. Julie then said she would want to access just a small amount, but the oncologist made it clear she should take it all and use it the best way she thought.
"The new chemo treatment was pretty much uneventful, we drove home and Julie said that she should be fine to go by herself the following week, but by Tuesday afternoon things didn't look so positive. Julie was extremely tired, had a dry cough, her heart was racing, and she started to develop a fever.
"When I went to see if she wanted to eat anything she said she thought that the fever was worse, and a check showed her temperature at 39°C. A quick phone call to the oncologist and we were on our way back to the hospital.
"Shortly after we arrived Julie was taken to a private room where blood and urine samples were taken as well as a nasal swab to look for viruses. A drip was put in and IV antibiotics were infused and 4 hours later we were back on our way home again.
"The following week showed no relief to the racing heart and the shortness of breath; Julie was convinced the chemo drugs had damaged her heart and she was going to refuse any more treatment until she had seen a cardiologist. The following Monday we were back at the hospital for her appointment, this time once the oncologist had seen her symptoms, she was admitted to the oncology ward for another round of tests. Heart echo, ECG, lung CT (looking for a blood clot), liver scan because LFT results were poor; all were performed and we needed to wait till the following day for results.
"The following morning we were expecting results at 8:30am, but the oncologist didn't come until 11:15am. Waiting for test results is about the most nervous you ever get, and we tried to fill the time with idle chit chat. When we did get the results, it was a mixed bag: LFT was still high, echo, ECG, and CT were all clear, but, they told us they didn't know what was causing the symptoms. We were told it could be a virus that wasn't part of the nasal swab tests, a severe reaction to the new chemo drug or some other currently unknown result of the cancer.
"Julie was discharged later that morning and told to come back the following Monday, where hopefully they would know more.
"During the week, the symptoms became steadily worse with any exertion making it hard to breathe. On Thursday evening, I spoke with the oncologist who told me to get Julie to have blood tests on Friday morning so the results could be checked.
"Friday morning the bloods were taken, but we didn't have a chance to wait for the results. On Friday afternoon Julie sent a text message saying that her legs were hurting, she had strange vision, and that she needed to go to hospital.
"I rang the oncologist and it was decided to get Julie to emergency straight away. We got to the emergency department and Julie was taken to a consulting room where initial observations showed that her oxygen saturations were very low at 77%. Oxygen was administered nasally and the reading returned to normal.
"Not long later, a young and very professional doctor came to see Julie and explained that although the scans didn't show it, he was certain Julie had pulmonary embolisms that were causing the problems with her lungs. He also told us that the results had come through from the bloods taken that morning and the results were not good. The cancer markers had gone from 86 to 190 in less than 2 weeks which meant that the cancer had become highly aggressive and they had suspicions that there were lesions on her brain.
"Julie went for a CAT scan of the brain and the results came back completely clear. With still no obvious reason for what was happening, Julie was admitted to the hospital and taken to the cancer ward.
"The following week still didn't give any answers, they had been giving Julie daily injections of a blood thinner that was supposed to alleviate the problems with blood clots, but there was still a slow decline in the way Julie could get oxygen. A second CT of the lungs was done and a second echo of the heart, but both were clear so they decided to do a test where a radioactive dye is put in the blood and then a different radio isotope is breathed in to see what is happening in the lungs.
"Later in the day, the results came in and we were told that it is definitely pulmonary embolisms causing the problems, but it is possible that they were being caused by cancer spreading in her lungs.
"By Tuesday of the following week, Julie was very weak and oxygen was now being given with a mask to try to keep the blood saturations at a safe level. The lung specialist came in and said that they were going to do a high resolution CAT scan of Julie's lungs the following day to try to determine the exact reason for the symptoms.
"I arrived at the hospital shortly after lunch and the test was still being done. An hour or so later, Julie came back still smiling and telling me it is going to be OK. I asked how she felt and what her latest observations were and she said, 'They're fine, don't worry.'
"At about 5pm that afternoon, the lung specialist came back to see us and told us that it was definitely cancer on the lungs that was causing the problems and there was a significant change since the scan done last week. Then a couple of hours later, an oncologist came in and explained that what was happening could not be stopped and Julie needed to prepare for the end of her life.
"I called all of her family and told them that they should come as soon as they can. Julie asked how everyone was and when I told her that everyone was crying, she started crying. She told me, 'All of these people are sad and it's my fault.' Even at this time Julie still thought about others first.
"Thursday morning I went in to work very early and then went home, got our boys breakfast, and got ready to go to the hospital with them. Julie sent me a text message asking me to bring lots of things down with us, she said the steroids were working well and she had lots of things to talk about.
"We got to the hospital about an hour later and carried everything in. Julie said she had been talking to an oncology nurse who had discussed the option of moving her to a hospital closer to home for palliative care, and also about organising oxygen so that she could come home for the day on Saturday to watch one of our sons play sports and to sit on the back veranda with the cats asleep on her lap.
"I went to talk to the oncology nurse and we discussed the option of relocation, the delivery of oxygen and also about making sure that when the end came, Julie would not suffer.
"When I got back to the room Julie said she was very tired and asked if we could go to a local shopping centre to get her a fresh juice. When we got back, Julie drank the juice and commented on how full she felt from it and that she wouldn't need any lunch.
"Then at about 4pm Julie told me that she hoped she could hang on till Sunday so she could go home and also to see her family. By 4:30 she was tired and wanted to lie in bed, I helped her get into bed, made sure she was warm and that the oxygen mask was comfortable.
"Just after 6pm, the oncologist came back in to talk to us. Julie reminded her that when the end was close she would give her something to make her comfortable. The oncologist said that that was correct and Julie said, 'I think I want that now,' to which the oncologist replied, 'I hear you sister.' I followed the oncologist out to the hall and asked if she thought Julie would make it till tomorrow when her family was coming, she looked at me and said, 'Maybe.' I then asked if the ward would call me if there was a significant change in Julie's condition and she told me not to go home.
"I went back into the room and told Julie that I was going to take the boys to get some dinner. When we had left the room, I told them that we wouldn't be going home and that the oncologist didn't expect mum to make it through the night.
"We went back into the room and pulled up the chairs close to the bed. We said a prayer together and said how much we loved each other. By 7:30, Julie said that she wished she could open her eyes, but she was just too tired. Not long after that, she became restless and the nurses gave her a morphine injection. She settled for a while, but by 9:00 she became very restless again, another morphine shot was given but it didn't seem to do much.
"We all kept telling her how much we loved her, our children kept reminding her of all the fun times they had and how much they had laughed. By 9:30, Julie became unresponsive but we kept talking to her, kept surrounding her with love and at 9:40pm on the 11th of June 2015, she took her last breath."
-- MfromAus, caregiver for his wife, Julie