It has been 16 days since I wrote to you, regarding my health care experience. A lot has happened since then. And I wanted to get back to you about some of what has transpired. I also wonder if your lack of response was due to the fact that you were out of province for a number of days, so I thought maybe you would have time now to learn more about my story, and to be able to put this knowledge to good use. Rather than relying on a department, a board or a Minister who have not been successful at all in dealing with this broken system, maybe some first hand knowledge would help inspire you to think about what can be done.
I have received some good news, after being very persistent with my health care providers. It took two unsuccessful meetings to get to the third and to finally have a clear understanding of my current condition. But I am happy to say, I have heard good news that helps a lot in my healing process. I don’t have a final “You’re cured” or even a proposed prognosis yet; that’ll come later. But I will share the good news I received because it has given me great hope and relieved a lot of stress. First, I want to share a few other things with you.
Even though you were too busy to even acknowledge my letter, I have heard from many people over these last two weeks. My letter was read by people all over the world. I have a very large network of friends and family who have shared my letter, because they care an awful lot about me, but others still, people I have never met, also shared the letter and sent me notes to let me know they were praying for me. This whole deal has given me one positive thing that will never be taken away. It proved to me that I matter. As a complete stranger to so many, I still mattered enough for people to share my story. To say a prayer. They cared that I have two little girls who need me for years to come. That my family and friends are scared for me.
So many people showed kindness to my family long before you ever heard from me. We are a fine bunch here in Nova Scotia. For the most part, we do what we can, what we know how to do, to help a friend or neighbor out, when they need it. And I was blessed to have a great many friends who did do wonderful things for my family, to help us out. The true Nova Scotian way. It is really unfortunate that our leaders take no action, but rather rely on others for even the smallest notion of compassion.
I wanted to write to you today, before I start my next phase of treatments tomorrow, because I am not sure how I will feel for the next month and beyond. I am told I will not feel myself for probably most if not all of the summer, but let’s hope it isn’t too bad. Based on the questions I received from some who wanted to understand my story better, to understand how a tumor in my head could be missed and then grow until it was the size of a half an orange before anyone would do anything about it, I thought perhaps you may have similar questions.
So, first some folks wondered about that first scan back in May 2018. They wondered about the
bump being missed. They wondered how when I had pointed it out to the technician, it still did not garner any attention. I have no answers for these questions. They wondered why my family doctor did not receive the pictures so she could see them for herself, along with the report. My doctor is not certified to look at the scanned pictures, so she does not have access to them. I never would have had access to them, either, if not for the subsequent events. When I had the scan, the report talked about my sinuses and said absolutely nothing about the bump. But when you look at the scan, you can see the tumor, clearly. Every doctor I have dealt with since December has been pretty sour about it. And I guess you could say, if they are disappointed in the report, I have every right to be irate. In February 2019, after the surgery, my family doctor called me at home, distraught over the reports she had received that week about my condition. She was completely devastated that I had cancer and that in spite of her efforts, this wait for medical intervention had gone on for so long. As I wrote before, I was on a wait list with no hope of seeing a specialist of any kind, until at least February 2020, dealing with the pain and all the other side effects for months. One other plastic surgeon did eventually accept my referral too late and I received a letter, only after I had already finally secured a consultation, by begging for a position on a cancellation list. The tumor could have killed me if I had not been so persistent and advocated so hard for myself.
A reader asked where the tumor started to grow. I have asked the question myself. Some doctors have said that it appears to have started outside and gone through the bone. Even today, they cannot say whether any cells were able to pass the blood-brain barrier. What I can say is that in May 2018, while you could clearly see the growth outside of the skull, you could not see anything clearly growing inside of the skull. I have thought a lot about this, and have been on a rollercoaster with my emotions. If only it had engaged the alarms in May, then the tumor may have been prevented from compromising my skull and wreaking havoc inside. I think I know why it did not get the attention it deserved. My question for you is do we have enough radiologists in the province? With such long wait times, is it the manpower we are waiting on? Are our current radiologists working too many hours, seeing too many patients? Most importantly, are all of our radiologists working in public health committing their energy and bright minds to the patients they serve in public health, or are there constraints on their time and effort in public health, because they are tired or distracted from also working in or running their own private clinics?
My story may actually work to illustrate very clearly the failings in a two-tiered healthcare system, especially if the diagnostic specialists and technicians are doing double time. I would like to note that the private clinic portion of experience, employment or ownership for more than one radiologist employed by the health care system is not included in their Department of Diagnostic Radiology profiles. I find it interesting that many years of experience and current work was left off of the very impressive profiles for each of these professionals. Many organizations prohibit moonlighting due to the distraction and fatigue caused by working in more than one job. What happens to patient diagnostics when the moonlighting is in radiology for the NS Health Care System? I also have to wonder how ethical it is for the province to also employ those who act as private health care providers in the province, charging for service, and then costing the province in Health Fund Transfer reductions.
Early detection is key to successfully treating and even curing cancer. And one of the key aspects of my diagnosis came 8 months after that first diagnostic scan was taken and erroneously reported on.
Out of almost 50 staples in my head after surgery, I still had 35 staples in my that needed to be removed, so I went to my family doctor’s office a few weeks later. Again she reviewed that report with me, read it to me. She was so scared of the consequences I faced due to this terrible oversight. She still hasn’t seen the pictures from that scan. I will show them to her when I see her later this month.
Another reader was a little bit skeptical of my assertions regarding the size of the bump and the rate at which it had grown. They had never heard of such a huge amount of growth in such a short period of time. I am not an expert on the speed at which Non-Hodgkin Lymphoma tumors grow, and so I can only offer the imagery as evidence for the size it was in May and then when it was removed on February 4, 2019. The pictures were actually taken a couple of weeks prior to the surgery, and I can assure you, it grew even larger in just those few days that I waited to see more specialists and get a surgery arranged. I agree, this rate of growth is unbelievable; shocking even. I was living the event, and I found it pretty incredible. Something else that has me thinking a lot. The same radiologist who urgently recommended an MRI after reading my scans in January, was the same radiologist who missed the bump altogether in my previous scan in May. I wonder if he knows.
One reader wondered if the doctors were certain the tumor inside my skull was the same as the tumor outside of my skull, since they had not operated inside nor done a biopsy on that part of the mass. I wondered that too. But I have faith in the doctors and others who, together, reviewed my case, that they
were knowledgeable enough to be able to look at the images from the ensuing MRI scans and be able to formulate a good understanding of what they were looking at. The images are actually really very clear on some levels, even while I have been told they are also very limited. Even though the process of getting to today has included times of frustration and a couple of hiccups, there has been a lot of time and energy invested by a team of experts. My surgeon reviewed these scans with other surgeons to ensure she was well prepared before operating on me. There are definitely some shortcomings in the technology we have, but, you don’t need to be an expert to look at my scans and see exactly what the problems are. In fact, the problems are so clear, and the surgeon was so clear… it was traumatizing.
Many people find it shocking that we have one PET scanner in the province, and were irate to find out it is used for patients from other provinces. I don’t have a problem with the out of province patients getting the help they need. Many of us go elsewhere for the help we need when it is not available here. But I would say it is not impossible for your government to buy another machine. A new one, that will have less age and operational wear and tear. Keep the current one and have both of them running. The objective for me would be to ensure no one is waiting for the diagnostic step to be fulfilled in order to get on with their treatments. I wish for no one to end up with a so many inconclusive and atypical moments in their journey as I did. It takes far too much energy, and adds far too much stress.
That brings me to another part of the feedback I received. Much of it was about you. I won’t share all of it, but people are very upset with you regarding our healthcare crisis. My story is one of so many similar stories. People have died waiting for a specialist. Others have gotten so very sick trying to get attention for their medical issues. Much sicker than they were when they started out. And yes, some of them have died too. Many thought you should see what I saw, for the sake of understanding that this is not just an overreaction or hypochondria. So many of my friends and family were shocked by the fact that this was the result of what one might call an error. This has many people thinking about their own situations. It has terrorized them. And I find myself soothing them. I have said, “This really has to be a once in a blue moon thing.” But, we all know it is not. More and more people are telling their stories. Multiple sites are collecting these stories for others to read. And the cost of doing things this way is making it more and more impossible to get us out of this mess. It is giving more of us less hope. And more and more people are pointing at you for this failure.
If I look at my story, and try to figure out what problems exist in the healthcare situation, some of them are disturbingly easy to fix.
As I said, I did receive some good news. I had requested an MRI, to create a better picture of my current condition and my Hematologist requested this for me. We had a few more problems getting a proper status update due to a radiologist failing to compare the MRI to my baseline MRI. So my hematologist requested yet another review and made arrangements for me to go back to the neurosurgeon who had originally taken on my case, who could look at the MRIs with me and give me a better report. The chemotherapy worked. The tumor is gone, and so now the last phase is radiation to kill off all the remaining cancer cells. Things are looking good at this point, and I will have a full prognosis after radiation is finished.
I also received a letter from Kim, Health and Wellness Correspondence Team. It seems you asked her to respond on behalf of yourself and the Minister of Health.
“As we work to identify issues and make improvements, hearing stories and experiences like yours helps us determine where to set priorities, make investments, and ultimately implement solutions to improve care. We have included your health care experience in our assessment process.”
Kim also let me know she was going to put me in touch with a patient relations team member. While I am guessing this was supposed to make me feel better, what it did was let me know that my story would be added to the growing pile of other stories, and someone would contact me. Neither of those things assured me that the decision makers, and those who sign off on actual real and meaningful change would ever actually do so. People have been telling their stories for years, and nothing has been done to improve. The crisis in this province has been building since well before 2013, but it has really been exacerbated since. More stories will be shared and more contacts will need to be made. After all of this time, and everything I have been through…
When I shared my letter and my story, it was never for the attention to be on me, but rather on the system that has caused my trauma and health concerns. It was also to encourage others to not be quiet about their health care concerns. So often in the middle of an illness, we find ourselves being the optimist, the positivity driver, the one reassuring everyone around us. But we have to bear the weight of our illness. I stopped being positive about my recovery when the system hiccupped over and over again, creating barriers where there didn’t need to be any. I stopped being polite when I couldn’t get better answers than “We’re not sure” or “We may never know”. The only people I reassure today are my kids. They are too young to bear any of the impacts of this situation. This is a deeply personal issue for me or anyone else to open up about, but it is a necessary step for any of us who are in the position that I am in.
I have a lot at stake that was close to being taken from me by this irreversible error and the inappropriate delay in my care. In the days before my surgery, I asked a friend to come take pictures of my family. I told her it would be our marker in how things were before this terrible time, but in my mind it would also possibly be the last family picture. If you read my first letter, you will remember there was a grave chance that I would not survive the surgery. My husband and I worked hard in those few days to keep our children protected from the fear and sadness we were going through. We concentrated on assuring them that it was all going to be okay. I am not sure if you have considered the personal lives or seen the faces of those impacted by the Health Care Crisis in this province. I think about others in my shoes or dealing with similar delays. I think about them every day. When I went for the first MRI in January, I found my mind burdened by the thought of others in this same position, knowing that someone had missed this major concern months ago, and now there is this urgent flurry of activity to find out what exactly has been developing without relief for all of these months. If anything were to come of my experience to date, with this life altering journey I have been on, please let it be that you are starting to recognize that there are real people, real families impacted by the decisions and choices you make. You have the ability in your position to make changes that will lessen these terrible issues in the lives of Nova Scotians.