I just thought I’d share my own experience of how important having the right doctors has been for me. I guess you could say I have a few trust issues, unfortunately these include not always having enough faith in myself to make the right decisions, sometimes I can be very black and white about things. This can be a bit of a challenge in life never mind when you are dealing with stage IV breast cancer. There was no way I was going to be able to just hand my life over to a medical team, which meant being informed enough and trusting myself enough to make the right decisions, arrrgggghhh! God knows Stage IV throws up some doozies let me tell ya.
What I’ve realised with terminal cancer is there are no definitive right or wrong decisions just the right ones for you at that particular time. There have been many times I have questioned if I wanted to be informed or sane, when I’ve thought Ignorance would definitely be bliss , but for better or worse this is just how I roll.
For many doctors I guess this attitude isn’t something they have been used to, in previous generations priests, doctors and teachers were considered godlike, and rarely questioned. Many public health patients (like myself) availing of free healthcare and having to often wait an age to get it, are so grateful when they do, they settle for whatever doctor they get. We do have a choice though and I hope we are finally taking more responsibility for our own wellbeing and see these people for what they are, human. As someone who had generally experienced good health and had never been hospitalised before it took me a while to navigate the system. I now know I need straight talking, yet empathetic Doctors. I don’t like evasion, I’m always thinking ahead and ask a lot of questions, including the tough ones. I appreciate having things explained to me in a manner I can understand. I like to feel that I am being heard and understood which for me means eye contact.
Sometimes I’m probably a royal pain in the ass, but my life is at stake here, so no I won’t settle.
Having initially presented to my GP with extreme chest pain and a leathery patch on my right breast I just knew in my gut something was wrong, I rarely saw my then doctor, he seemed very nice, but a bit too laid back for my liking. Having examined me he arranged a mammogram for 6 weeks’ time. Over the next couple of days my symptoms increased and my right arm became numb, I asked to see a different Doctor. She sent me directly to the hospital and within 3 weeks I had undergone a triple assessment (breast examination, mammogram and/or ultrasound, and biopsy) and was diagnosed with breast cancer. Still my GP now, this wonderful lady who not only hears but listens has saved my life more than a couple of times at this stage.
I must add that at my first medical assessment, my bloods and an X-ray were normal. I was seen by a young doctor who after some manipulation of my right arm flippantly shrugged his shoulders and told me it was most likely muscular. I asked for a breast examination, to which he replied he didn’t usually perform them, I insisted. Once it was done in the presence of a nurse, again with the shoulders, he dismissed me and said, ‘yeah maybe you should have a mammogram’.
Despite being treated like a complete hypochondriac, thankfully my instincts were screaming at me that something was wrong, and although he may not have affected my prognosis he could have. If your gut tells you something is not right and your doctor disagrees find another one, your life could depend on it. Trust yourself, you know your own body.
So on the 20th of December 2012, my surgeon, a very neat man with striking eyes made all the more so for rarely seeing them, (he’s not too big on eye contact), informed me I had a 5cm malignant tumour in my right breast. I felt so sorry for him, what a job and so close to Christmas. He’s all business and any attempt at being genial is lost on him, but if he’s a good surgeon then I guess that’s enough. I would see him three more times and by then had firmly decided, no actually it’s not enough. I struggled with his formality, his refusal to not just look at, but see me, his dislike of being questioned and his offhand remarks to prove it. He wasn’t too impressed that I also had a second opinion, but I was in trouble and had already lost confidence in him. Let’s just say his bedside manners weren’t to my liking and we parted company.
Finally having had stage IV confirmed in February 2013 I met my Oncologist. I count my blessings every day that this wonderful woman is heading up my team. She knows exactly who I am (because I told her and she listened), and what matters to me most, quality of life, and if we can throw in a bit of longevity all the better. She knows what I really want is an Integrative Oncologist which she admits she is not. She has always encouraged me to seek a second opinion when I’ve felt my back was against the wall. She knows I will try to avoid Chemo at all costs, and has fought tooth and nail to facilitate this by securing my current targeted treatment. She knows I will do my research and I will try all kinds of weird shit to keep myself healthy. She knows I will question everything and she knows so far, together 5 years in we have done pretty alright.
In 2014 my cancer progressed significantly, it filled the breast and had attached to the chest wall. Thankfully there was no progression elsewhere. I undergo radiotherapy, which is successful and shrinks the cancer. My Consultant Radiation Oncologist, another straight talking, yet approachable and supportive doctor, encourages me to seriously consider surgery. I see my surgeon one last time, he advises against surgery, and I seek a second opinion. Surgeon no 2 is eager, upbeat and friendly with a permanent smile on his face. Although he can’t guarantee I’ll live any longer if I have it, he thinks I’m the perfect candidate for surgery. These guys are literally like night and day and I’m terrified, what’s that saying,‘Doctors differ and Patients die’. My lovely companion thinks this is great news, but I’m totally distraught, how in god’s name do I make this decision.
After a torturous couple of weeks of talking with loved ones, research, pros and cons and a second visit to surgeon no 2, I finally decide. I really needed to be as unbiased as possible in making my decision, shit my life depended on it. Having sat down with surgeon no 2, for over an hour, where he addressed me by my first name, looked me in the eye and answered page upon page of tough questions, I finally felt confident that surgery was the right thing for me. On Thursday 22th of January 2015 my right breast was removed.Thankfully to everyone’s delight and surprise I think? I healed really well. As I decided against routine mammograms I haven’t seen a surgeon since.
So the main problem with doing things my way, wanting to be informed and completely involved with my treatment plan is, the buck stops with me, the decisions are all mine.
This can be absolutely terrifying and head wrecking, what if I mess up, what if I get it wrong, which is why I need to have faith in those fighting my corner. Call me naïve but I need to believe that they know me and they actually care. I’m not saying any of these doctors are better than the others,( hmmm, I kinda am) I may not have fared so well after surgery or I may have lived this long without it anyway, it’s a throw of the dice. I’m saying that some of them were just better for me. One patient I met didn’t like my oncologist, (thought she was too blunt) and loved my surgeon ? You do have a choice, public or private, you are fighting for your life, you get to choose who you trust to help you.
On Friday June 10th 2016 having already been admitted twice that year with infection and fluid on the lung, I presented to hospital with shortness of breath and this uncomfortable feeling of fullness. I had a chest scan to rule out a clot, but something still wasn’t right. Thankfully my Oncologist was on call that day and at around 4/4.30 pm she sent the on duty cardiologist to examine me. Using his phone he performed an echocardiogram and determined that I had a large quantity of fluid around my heart. While I didn’t know it at the time this was potentially life threatening and needed to be drained urgently. As it was almost 5pm on a Friday evening (and we all know you can’t get sick in this country at the weekend!) most of the theatre staff had already left and the rest are just about to. Thankfully those who were still stuck in traffic return and those still there hang on to perform the emergency procedure. Had my oncologist not been there or had it been any later I may not have survived to tell the tale.
Just to note, over the years I’ve often heard people say that same sex doctors are better, I never gave much credence to this as pre-diagnosis I rarely went to the doctor. Both my GP and my oncologist are women and I find them wonderful, this might just be luck or maybe I am more comfortable because they are female? Initially in my eagerness to get answers I was always asking questions or pre-empting asking questions and didn’t always listen properly. A no brainer I know, but it’s very important to really listen or have someone with you who does. As a rule I don’t bring family members with me for results/consultations, they are often just too nervous or emotional to help me and sometimes I need help, someone who is up to speed and can take over if I fall apart. I always bring a notebook of questions with me to clinic, it’s got to the stage if I don’t produce it my oncologist asks me where it is. I’ve also realised I need to be very careful about the questions I ask, I need to be sure I really want the answers, do I really need to know, will it be helpful in my fight to stay alive.