My mother died at the age of 56 just eight years more than I am now. She had MS every day we spent together, her life as I remember it was a pitiful existence. There was little joy permeating the constant struggle, for any of us. She got little in terms of support nor did we. My father died at a few weeks short of 91, he had excellent health up to the last year and half of his life. I don’t want you to think, I wished the roles were reversed, I just wished something could have been done to make it fairer, but since when did life ever proclaim itself to be fair.
I used to pray for a miracle and when things got really bad I used to pray that she would die. Afterwards, I would be eaten up with guilt, remorse and anxiety that it might actually happen knowing it would then be no one’s fault but mine. Later feeling that anything bad that happened me was as a direct result of those evil thoughts I’d had.
What I didn’t realise back then was that “medicine and miracles”, have no correlation.
My thoughts and feelings were those of a child that didn’t receive any information or support. As I’ve gone through my life the realisation that those two things, could have a profound effect on my ability to cope with anything, that got thrown at me became very apparent.
With information, I have the ability to make sense of what is happening inside me, make decisions, with the support I can negotiate the feelings that come with the diagnosis. Why is this important? Because cancer remains one of the most frightening words a physician can say to you.
With these two important structures in place, I have the ability to make decisions. BUT, how do I know the information is reliable; because I have decided to put my “faith” in medicine, not miracles, and I also put my faith in my Oncologists of which I have had two.
If you look for the definition of Oncologist online it’s quite short; a medical practitioner qualified to diagnose and treat tumours. When I read that it doesn’t do justice to the experience I have encountered.
When I was first diagnosed I used to turn up at my appointments in London with my baby in tow, the room was small he was small, he would cry, I would cry even more. My Oncologist showed me amazing patience, understanding, compassion. He was busy, the clinic was always full but I never felt rushed, he gave me information in a way that I could deal with it. If I asked for more I got more, but it was a gentle process, he was supporting me in the way he was trained to. When things got too much he organised counselling for me. Was everything perfect no of course not this is real life, we had differences, sometimes I wanted extra tests he felt were unnecessary, I had limited understanding of my condition or treatment protocols, I didn’t feel it was my place to worry about a lot of the background stuff. I just wanted to feel I was being cared for in a way that would mean I’d be returned to perfect health and I could get on with my life. I wanted and needed reassurance and support alongside the physical treatments.
When the time came he helped facilitate a smooth transition of care to Ireland. We kept in touch more infrequently as the years went by. We both hoped I’m sure that we would never meet again. We both hoped I was one of the lucky ones. When I saw him for the first time in ten years, in the middle of an incredibly busy conference in Chicago. He knew me instantly, remembered my name and on hearing, I was now dealing with a terminal diagnosis, became visibly upset so we did what two people do in that situation, we hugged tightly, oblivious to those around us. He was supporting me again, and I appreciated it.
When I had my recurrence the surgeon, who had the unfortunate task of breaking the news to me could do no more for me. I was on a day-ward that had to be opened because of bed shortages, the curtains had been drawn around me since the afternoon before when I’d received the news, the nurses apologised they really wanted to move me to somewhere more private to absorb the diagnosis. I was assigned a new Oncologist, to be honest, I was so ill, I didn’t care a jot who it was. When he arrived he didn’t stand at the end of my bed, he came alongside me bent down to my level and held my hand. He told me what I already suspected I was incredibly ill, he didn’t tell me I was dying but I knew then that it would be a matter of time; I didn’t need to hear all the details, I needed a plan and support. He gave me both that day, I cried for the first time but it wasn’t from fear, at that moment it was from relief, I had been so ill with weeks and now here was someone who was going to care for me. I left the hospital feeling incredibly calm given the circumstances.
As time has passed by the relationship has shifted dynamic, I got better because of decisions he made when I was too ill to make them for myself. I took his advice, on my diet because I was painfully thin, I took his advice on rest, on exercise, on pain relief. As the weeks stretched out into months, I became more curious, I asked more questions, he encouraged it, he supported it. When I told him I was attending international conferences, we discussed the things I was hearing, I questioned my treatment options, I understood by now much more about my diagnosis.
Sometimes we disagree on things, he is never patronising or misogynistic in his responses. What he is, is incredibly busy, he works long hours of that I am sure, makes personal sacrifices, spends time behind the scenes negotiating the complexity of getting scans, reports, beds. In spite of cutbacks and a system that makes things difficult for patients and doctors, I sit in the waiting room and watch the way he greets his patients, its warm, friendly supportive. We are all treated with equal respect. Sure he probably gets well paid, do I care no because I understand the value he brings, to my life, my family.
Someone once said to me you don’t need to like your Doctor they just have to be good at their job………… I’m not so sure I agree, they do need to be good at their job, but one does not over-rule the other, it always helps when they are respectful, show empathy, but that also goes both ways. The dynamics of Oncologist and patient relationships are different should be different this is an incredibly vulnerable position you’re in together. Will it be perfect, could things be done better, of course, there is always room for improvement, but that never comes without good two-way communication.
Do we expect them to be everything, sure we do because when we are ill we want someone to guarantee us everything is going to be OK, when the miracle isn’t produced, it’s easy to blame the medic……… not the medicine, lack of research or the system, the same system that frustrates our medical profession on a daily basis. Have we really arrived at a point in time where we don’t believe doctors have our best interest at heart? Sometimes it appears that way depending on what direction you look.
Do we give our trust over, to the great pretenders, the quack, the charlatan, the celebrity, the fad diet peddlers, the faith healers, do we believe they have nothing to gain, do we believe they will understand our vulnerability, do we abandon all sense and reason and go blindly in search of the miracles they promise, that ethically our doctor couldn’t…………… because they understand as we certainly should, that miracles and medicine don’t correlate and science is where we should place our faith, as we continue, negotiating the complexity of humans.
Sometimes it just isn’t fair, people go long before we expected before we were ready to let go, that is the most difficult part to accept about this rollercoaster we find ourselves on called life. Sometimes miracles are just good people with kind hearts………