I had a two week wait after my surgery for my follow up appointment with my surgeon. At this point, I was told chemotherapy was unlikely but they would like to radiate the right chest wall to zap any remaining nasties. Then it would be hormone therapy in the form of daily pills for the next 5-10 years. This appointment was a day before my mother’s funeral so it was a weight to get it over with so I could put my energy elsewhere. I left this appointment feeling indifferent if I am honest. Great news about chemotherapy but I didn’t know enough about radiotherapy to have an emotional response and my immediate concern was about wearing a bra and sponge breast forms over my new scars for the following day.
5 days later, on Christmas Eve, I receive a call from Hilary, the breast nurse.
‘Samantha, before you appointment with Dr A after discussions in the MDT (Multi Disciplinary Meeting) it has been decided that you will benefit from meeting Dr B to discuss benefits of chemotherapy.’
Christmas Eve. I was supposed to be celebrating or at least trying to salvage what little was left of the festive period. That sounds a bit depressive but in all honestly that's how I felt. I wanted to get in bed and not surface until January. I felt pretty crappy after that phone call. Little did I know this was one of the most significant twists of fate yet.
So New Years Eve I head on out to meet chemotherapy man or Dr B. He is the first oncologist I have met. And he is LOVELY. He listens to me. He asks me to share my opinions. He asks how I am feeling. As a result of that appointment I leave feeling very positive. That potentially neither chemo or rads would be required and at our next appointment in three weeks time, with more results from further tests, I could be walking away cancer free and treatment free .
My appointment with Dr A rolls round. He is the radiotherapy man. I didn’t even apply for my ‘cancer car pass’ for reduced parking fees because I knew I wouldn’t be coming to have radiation based on the information from Dr B.
Dr A definitely had other plans.
‘So Samantha we will start you on three weeks of daily doses of radiation to the chest wall’ absently as he flicked through his diary.
WHAT?! No No No! Dr B said I didn’t need to have radiation and my preference was no further invasive treatment unless absolutely necessary. Why is he saying this?!
It turns out Dr A and B have not spoken, do not know each other and there had been a balls up somewhere along the line as no one has two oncologists. Patients have one oncologist. Here I stood, not only with two oncologists in two different hospitals but two oncologists with conflicting views. I left the appointment shell shocked and with a tonne of questions. I also left the appointment with no firm decision or way forward but far more fearful and tearful than when I went it.
The next two weeks passed by. Within this time I had been back and forth on the phone to the breast team requesting an earlier appointment with Dr B to clear up some significant confusion. I needed answers based on my specific data before I could make a final decision. The breast team patiently copied out my questions while I dictated them over the phone. They would ask him and call me back. They did and the statistical evidence based information was handed to me.
This makes it sound very matter of fact. These two weeks, apart from the waiting in the early days, was the most challenging for me. I was having to face the concept of making a choice that could result in me leaving my children without a mother. I was full of fear and uncertainty. Not knowing whether it was my ego running wild shouting I KNOW MY BODY BEST / YOU CAN’T TELL ME WHAT TO DO or whether it was my shadow voice sadistically taunting me. I couldn’t shake off the initial conversation I had had with my biological mother as I told her about my diagnosis.
‘Who will have the children when you die??’
‘No mum I’m not going to die. They’ve caught it early and it’s fully treatable and I’m going to avoid chemotherapy if I can.’
‘But if you don’t have chemotherapy you will die!!’
I decided at that point that we didn’t need to have any more discussions around my cancer.
My mother was a fearful and anxious woman. She was just projecting her fears on to me. We do this unknowingly all the time and my mum was no different although her tact and empathy could have done with a little more attention to detail. But I could not live a life in fear of what might or might not happen as a result of a ‘wrong’ choice. I am not a fearful woman. I am brave. I am also scared but as long as any decision I make is not born out of fear then I get to play a part in my destiny.
You see, you can ask anyone to validate what you want to hear. I can go to my homeopath or my herbalist and my lovely friend who works at the health shop to tell me that I can fight the fight naturally without the pharmaceutical fat cats monopolising on my disease. I can go to a very traditional western oncology team who will advise me that they have evidence to support that medical intervention is the best most efficient way forward and alternative treatments are quackery. (To be fair I have not actually had anyone say that to me-but I would have jumped down their throats had they) I did have a bias. I barely take paracetamol. But I am also not daft. Everything has a place. And we are so privileged to have the scientific and medical knowledge and resources we do. But if we choose to only listen to one side of the argument because we are afraid to see the whole picture then we are doing ourselves a disservice.
I was very defensive with Dr A. The day after my appointment I woke with a cricked neck that didn’t ease for a week. Now I could have just slept funny. But this could have also been down to the fact I was unwilling to see the full picture with Dr A. I was only looking in one direction. Tunnel vision. But Dr A WAS offering me new information. Not information I wanted to hear mind you. But valid information none the less and information that helped me to understand the full situation better so I was better equipped to make an informed decision. I am not anti-medicine. Quite the opposite if it is appropriate. These people are experts in their fields. They are so valuable. And I am beyond grateful for these people and our health care system. But I know myself. So let’s have a discussion, especially if there is not a unanimous school of thought based on traditional western medical practice of what treatment path is best for me then let me decide based on a holistic approach. Holistic doesn’t mean hippie, dancing naked round a tree and chanting. It means WHOLE. Or integrated. Taking into account the WHOLE picture.
I believe in grace. I wasn’t supposed to meet Dr B-the first oncologist. He was not a part of my post operative plan. But I met Dr B BEFORE I met Dr A and we had a holistic two way conversation around all post operative treatment. Had I not met him first or even at all, I would probably be having radiotherapy now. Had I not been aware of the new revised and updated NICE guidelines, updated once every decade, released ONE MONTH after my diagnosis that determine courses of treatment for healthcare professionals to follow, which moved my data from the camp of needing treatment to not needing treatment, I would probably be having radiotherapy now.
I could look at all the synchronicities of my journey so far as coincidence. But I don’t. Because I have an innate understanding that all of these happen for a reason. I am not supposed to know the reasons but it is far bigger than I can conceive. And so universally I am grateful.