Today, I am sitting here, trying to be calm and trying harder not to cry. I have cried far too much over the past year. First due to constant pain, and then due to horrible consequences I have faced, caused by the Government of Nova Scotia and the mismanagement of the healthcare system in this province. It is important that you read this, and very sincerely consider what I am about to tell you.
I first want to say that I do not blame you for causing every concern I have. But I do blame you for not taking some semblance of effective action to rectify what is most definitely a cracked and crumbling system. I know you inherited a mess. I know some of the issues existed prior to your tenure in government. You never would have promised a doctor for every Nova Scotian if we all had one already. Your predecessor never would have promised to keep rural ERs open, if they were consistently and constantly open already. In 2006, we heard promises of more hospital beds and nursing home beds from your two opposing parties. So I do know the healthcare system has needed major attention for a very long time. But you have not helped.
Today, you hold the keys and the cheque book, and today I am writing to you about my issues. But when you consider my issues, please know that I am speaking for thousands of Nova Scotians. I am not alone. And while somewhat unique, I know I am not worse off or better off than anyone else confronting the shortcomings in their medical care. I am a single example of what really has become a much greater crisis and an example of a predominant healthcare experience in this province for far too many Nova Scotians.
Last winter, I felt a bump on my head. It was an elongated and low bump, one that most others would not notice unless it was on their own head. I went to see my doctor for a check up, and I brought this bump to her attention. She suggested it felt like many bumps she had felt over the years, and was not overly concerned but suggested I advise her if anything changes. At this same time, I was suffering from dull headaches every day, fatigue that interfered at some level with my day to day, mildly blurred vision while I had tested at 20/20 only the year before. No direct relationship was made between these issues and my bump, by me or my doctor. She did send me for blood work and suggested some of my issues may be related to age. I was 48 at the time.
In May, I returned to the doctor’s office. The bump had grown by 300%, now the size of my thumb. She sent me for a CT scan. And this is where the first failure occurred. When I went for the scan, I told the technician exactly where the bump was. She acknowledged it, and said the scan would see it. But when the report went back to my doctor, there was no mention of the bump. Nothing. The report stated that my sinuses were congested. It was allergy season, and I am allergic to grass, so that made sense. I started taking my allergy pills. But with no mention of the bump, my doctor had to presume it was a cyst or something filled with liquid or air that the CT scan would not pick up. She recommended a plastic surgeon should look at it.
Over the next two months, my referral was sent to many and rejected by all but one plastic surgeon. The consistent response was that scalps are not something that most of our plastic surgeons work on. They would not even see me. The one doctor who did agree to see me had a wait list of 18 – 24 months. So, I would have to wait to see him until at least February 2020 or as late as August 2020. My doctor kept sending my referral out to other doctors all over the province, in the hope I would be seen sooner. I remained on the wait list for the one doctor who would see me. I continued to have headaches, felt more and more tired and my vision was just as blurry.
In the meantime, new symptoms started surfacing. I was getting a rush of painless pressure in my head that would subside quickly. It would come on suddenly, while I was sitting, standing, reading, talking, walking, eating… whatever. There was no rhyme or reason to what was causing it. I thought maybe it was a blood pressure issue, but my blood pressure was not a concern when I was checked, and since I wasn’t having a rush of pressure during any doctor’s appointments, she could not assess me while it happened.
Over the next months until early December 2018, the bump continued to grow. It was now the size of a plum. It was changing in shape, never a smooth round lump, but rather a long ridge; then a squarish mass, with dimples and high points. It also appeared that more ridges were forming, extending off of the main area of mass like fingers. When friends or family felt this bump, they were terrified for me. I continued to believe that the CT report indicated it must be a cyst. My doctor looked into an ultrasound, but there was no such thing for the scalp. I did not know she had requested another CT scan.
I had received a call to come in for the other CT scan in mid-December. Since I had heard from my family doctor that I was going to go for an ultrasound, I questioned the CT scan. I mentioned that the bump had not been visible in a prior scan, and the technician agreed it likely wouldn’t show up in a new scan. In the conversation, I was of the understanding that the CT was their recommendation rather than an ultrasound, and never understood it was requested by my doctor. I did not want to waste anyone’s time doing something we all knew had not provided results before, so I opted to not take the appointment. I regretted this just days later.
In discussing this bump, and the headaches and everything else with friends who worked in healthcare, I was given the names of two new plastic surgeons who had started working at the QEII. I passed those on to my doctor. I had also suddenly developed almost constant twitching in my right eye by this point, and a constant ringing in my head. I had a feeling the bump was not just a bump, but what could I do but wait. I was also advised by a friend in healthcare to get in touch with the doctor I was waiting to see next year sometime, and advise of the changes in my condition, and request to be put on a cancellation list. I did this right away, and thank God, I was called in two days later.
This is when the failure I mentioned in May 2018 became apparent.
When I met with the plastic surgeon, and his team, they were all very much befuddled by the CT report sent to my family doctor. While my family doctor never had access to the pictures produced by the scan, and had to rely only on the report sent to her, the plastic surgeon had the full image file. And for the first time on December 14, I saw for myself, what the radiologist had seen, and failed to even mention back in May. A very clear and obvious mass. It extended like a finger across the back of my head, between the scalp and my skull.
During this consultation, the plastic surgeon was fairly certain my bump was not a cyst, or a lipoma. It did not have the characteristics of these two innocuous and common health issues. But he was not sure what it would be. He was not sure how to go about getting it out either. So he suggested another CT scan, to get a better idea of what was happening, since there had been so much growth and change compared to the earlier picture. It would help him determine how to go about removing it, either through his clinic or if necessary a surgery. He would then send the mass to pathology for assessment.
Due to the timing of the request, it was not until January 16th, 2019, that I was able to have that second CT. How I wished I had gone ahead and had the CT in December. I was being considerate of waitlists and now I was the one waiting. I called the surgeon’s office the next day, as he had requested, to advise the scan had been done. His assistant booked me to come in to see him the next day. A couple of hours later, she called me back. The surgeon and the radiologist were concerned with the image they were looking at, and determined an MRI was necessary. This is when the clouds started really forming. Up until now… I had been convinced, by human error, that I was fine. I went for the MRI five days later, and then called the surgeon to advise. His assistant booked me in for follow up that Friday, January 25th.
I did not expect to hear or see what was presented to me in that meeting. Terror is the best word to describe what I felt then and again in a few days. Unbelievable terror. You see Mr. McNeil, the mass under my scalp, was the least of my worries. What was really going to be a problem was the rest of theat mass that was eating through my skull and growing around the liner of my brain. And then there was the part of the mass that was growing around, and compromising the superior sagittal sinus, essentially cutting it off, blocking it. In case, you don’t know what this is, it is the main vein, that crosses over the top of and down the back of the brain. The plastic surgeon very apologetically stated he could not help me. This was not his area of expertise. Of course not. He immediately went and called the neurosurgeon on call for a consult, and she took me on. There was some discussion about having a biopsy, and he would help with that if necessary, but the neurosurgeon would see me on the following Tuesday. January 29th.
The worst day of my life.
So, we went to see the neurosurgeon. We had had a weekend with friends from out of town. They were visiting Halifax from Sydney because one of the kids needed to see a specialist at the IWK. So at the same time this teenager was heading out to see about his major health concern, having travelled four hours to get to the nearest specialist, I was heading out to see about my own. You can well imagine it was a bonding weekend.
Even though I had already been given some clues to the seriousness of my condition, most of the details were out of my realm of comprehension. The words flew by my head in that meeting the prior Friday. The neurosurgeon worked hard to give me everything she knew. She apologized numerous times for being blunt, and for being the bearer of incredibly bad, horrifying, terrorizing, trauma inducing, news. Rare. Extremely rare. Never seen before. Extremely serious. Unknown. Mystery. These were words that I have heard over and over again, in that meeting and many times since. She explained the damage she could see to my superior sagittal sinus. And she explained better the risks and seriousness of the surgery she would have to perform. That vein was a major concern. It is what drains blood from all parts of your brain starting at your sinuses and collects from all the veins in your brain. Completely blocking or damaging this vein equals death. No option to repair. No reversing it. And the images clearly showed a mass was settled in and growing around this vital point, pressing against it, in a way that pinched it.
She looked into my eyes and could see swelling around the canal that drains the eyes. She suspected my brain was finding other ways to drain and was using my eyes. This would explain the blurry vision. And it cannot be reversed. She feared blindness. She explained that the tumor has compromised my skull. It looked mushy, like wet tissue. She talked about the risks of the surgery to the vein, and explained that touching it, risking damaging it was out of the question, so she was not sure she would be able to remove the tumor around it completely. She was not taking that chance. She told us, there was a big chance I would not survive the surgery. She also opted not to do a biopsy because of the risks to my scalp, not knowing what they would find. I had already experienced some thinning in the hair around the bump, as the tumor was suffocating the hair follicles. She said they would do the biopsy while I was in surgery. It would help them determine the course of action to take while they were operating.
She said she should admit me immediately, but because I seemed so healthy, so strong, she wanted me to go home and be with my girls. Hug them. Enough for a lifetime. Spend the time with them. Get things in order at home. These words continue to hurt to this day. The idea that I might die in a few days. That my two young girls would lose me. That I would lose the opportunity to be with them as they grow up. It just hurts beyond words. I felt so much pain and this moment has made me cry more than anything I have ever experienced in my life.
I had surgery on February 4th. By that time, the tumor was the size of a half an orange, with more mass growing outward around it. My husband sat in the waiting room with only one concern – I had to wake up. His greatest fear was that I wouldn’t. His second greatest fear was having to tell our girls. When the surgeon opened up my scalp and got in there, my mushy looking skull was not soft at all. It was as hard as it should be, with some malformation from the tumor. The biopsy was done, and it was determined I had some kind of lymphoma. There are 70 types. A full pathology would take seven days. Lymphoma responds well to treatment, so it was decided, due to the risks to the superior sagittal sinus, and since my skull was solid, it would be a far greater risk to try to cut through my skull, to take out any more of the tumor. All of the tumor had been removed from the scalp outside of the skull. They left the rest inside and closed me up.
Over the next weeks, I received my pathology results. It was a Non-Hodgkin Lymphoma, but they still were not sure which one. There are over 30 types. And they really could not understand how it got there. In that location; both in the scalp and inside the brain cavity. Neither are known places for such tumors to show up. Also, why did I have this cancer at all? The typical candidate is over 60, or male, or had had a weakened immune system. One other known link to this disease is pesticides, such as Glyphosate. You and I should talk further about this last link, because your government continues to approve the use of Glyphosate on our forests and farms in this province. I started studying the issue long before my bump ever appeared. You and every other government should take this, and recent findings, into consideration for the sake of all Nova Scotians’ health.
The next step was to have a positron emission tomography (PET) scan. I waited weeks for this. The one and only PET scan machine in Nova Scotia was broken. So I, and hundreds of other Nova Scotians, sat waiting for a diagnosis and delayed treatments. And I had no idea if there was cancer anywhere else which would have told me if I was Stage 1 or 4. Others were not getting their post treatment assessments. The machine was working for a little while, and so my doctor scheduled me to start chemo thinking I would have my initial scan. But then the machine was broken again. I was very apprehensive about starting chemo without the PET scan, but my doctor was equally apprehensive about waiting any longer to start my treatment. I met with her, and she told me I have diffuse large B-cell lymphoma. It is considered common, but as I said, not for a 49 year old woman, and not metastasizing in her scalp or the liner of her brain. The only explanation was that it had possibly travelled there from another lymphatic location. It would still be rare, but a PET scan would have cleared up that part of the mystery.
I never had the PET scan until 8 days after I started chemo on March 8th. The report came back inconclusive. It cited the timing after chemo as being an issue. Of course it did. I was considered Stage 1 without evidence and considering the perplexing appearance in such an odd location, it has never really been determined. This inconclusive result has resulted in inconclusive results since.
The PET Scan would have, should have provided a baseline. I have been dealing with that in the environmental end of things for years with my other long-time battle, the quarry in Fall River. And in our health, a baseline’s importance is no different. It’s your starting point, before the toxins and the medicine and the alterations. It’s how to measure damage or change or improvements. But my doctor had said my brand of cancer always responds very well to the chemo and to the plan they made. She convinced me to proceed.
During my chemotherapy, I had experienced a low white blood count, and inflammation around the site of my head surgery. I had to go to the QEII Emergency Room to consult with the Neurosurgeon Resident on duty. There was a desire to admit me, due to the risk I had an infection, so that they could run more tests. I did not want to be admitted. And agreed to come back for any and all tests when they were scheduled. I did end up getting a CT and my blood work done on the spot. Their results did not give the doctors any concerns. So in spite of my compromised white blood count, and other than the very heated and swollen area around my incision, I was in good health. They agreed I could go home. It was two days later I came back for an MRI at 9:30 pm. If I had been admitted, in order to expedite the MRI, how much would that have cost?
During my treatments, in the hematology department, there were several rooms around the floor. I was in one room, walked past a few smaller rooms, all were full every time I was there and I knew the other rooms down another hallway were well populated. My treatments took seven or more hours. And my room was like a rotating door, with people coming in for a couple hours or less, leaving and being replaced by others doing the same. Eventually, the room would thin out over the day, as would the others. If there were twelve chairs in my room, there were 30 plus patients in and out of those chairs throughout the day. Imagine the same in every chemo room in every chemo clinic in the province. Every day. The chemo clinics run every day too, regardless of holidays or weekends. They also do blood transfusions for cancer patients. I could guess at the volume of patients we have going through the treatment process all over the province when I looked around me in that room. Those numbers are overwhelming. And how many are facing similar stories to mine? From what I see on social media and in the news, far, far too many.
Skipping ahead to this week. I have finished chemo and had another PET scan on May 13. And guess what. It came back inconclusive. It outlined an increase in activity, but no one is able to determine what that activity is, because my baseline was never done. The only scan to compare it to… was inconclusive. So it was a useless test. Again. I am supposed to start radiation next week, and I have no idea if the chemotherapy did what it was supposed to do. How do I go ahead, and once again start the next phase of fighting this disease with no clear picture of what at this point I am fighting? I wasn’t sure I would get a yes it worked, or a no it didn’t work, but I certainly wasn’t expecting we don’t know if it worked.
I asked for an MRI. I want to see the current state of this tumor. Did the chemo work or didn’t it? I want the experts in charge of my care to have real and accurate information. And I have waited all day today without any call to say when the MRI can be done.
I would hope you can see my story is not just a story, but rather a list of repeated and continued failures within our system to meet the needs of a patient’s health. There is more to this story, and over time, I am going to share it, but right now I want to make sure you understand the cracks I have crashed through, while going through the gravest and most traumatic event in my life.
- CT scan – Radiologist fails to report on large and clearly visible mass present in imagery. The greater risks to my health, and the permanent issues I now face could have been avoided to some degree.
- Wait time – delayed medical attention. 18 – 24 month waitlist. Patients will not always succeed in shortened wait times as I did. Not everyone knows how or has the ability to advocate for themselves.
- Doctor Shortage – Do we have enough plastic surgeons in this province who work on scalps? No. What other micro-specializations are experiencing the same or worse wait times?
- PET Scan – We have one PET machine in this province. We also serve PEI. It is 11 years old and experiences operational and age related breakdowns exacerbating diagnoses and prognoses in cancer patients. A new machine will cost $6 Million, 0.13% of the current NS Health Care Budget.
- The number of MRI machines at the QEII is two with a third either recently or still in the process of being installed. They run 24 hours a day some days, keeping up with the need for their diagnostic imagery. Patients in the ER wait in the queue behind all other patients, sometimes for days at a time, at a cost of $5,000 per day. How much has this cost us, rather than investing in the diagnostic equipment that we need, such as MRI machines and another PET scanner?
- Doctor shortage again – Did my Hematologist have enough time to thoroughly assess my second PET scan and consult with others to determine what else could be done to gauge success.
About a year before all of this started, during a visit to my doctor, I asked her if she felt a lot of stress with all of the news about doctor shortages and healthcare system concerns. She told me her stress was about whether her patients were receiving the care they needed for the issues she was not able to look after. She was terribly upset when she learned of my tumor. She called me at home to hear the whole story. She had sent me for the CT that came back without any note on the mass. She went back over the report with me again the next time I went to see her after my surgery. I could tell she was really troubled by the whole scenario. This is something other doctors have expressed concerns about, and it is a situation that drives doctors out of this province.
Now I am sitting here, not knowing if I am being cured. Not knowing if I will be cured. My girls, aged 9 and 11, have dealt with the fear of my illness, throughout, and I hope you can recognize the grave position of living with the constant unknown for a family with young children. I hope you recognize the impact this has on children all over the province. For a cancer that was supposed to be so responsive to treatment, why am I facing such struggles with gauging that response? How did I ever get into such a condition that my life was at risk? I hope you read this with some compassion and endeavor to take steps immediately to correct at least the simplest of issues, I have outlined in my story for you, so that other families do not face the same trauma and close calls that we have dealt with these last months.
I am posting this letter to open social media, as well. As we are sharing our stories, Nova Scotians are becoming more and more aware of the struggles faced by their neighbors and coworkers. It helps all of us find our voices in seeking solutions and providing support to those willing to make a change.
Thank you for your time, and I hope to hear from you.