The challenge this week was to continue smiling with my head held up high.
A month ago I got a second opinion from experts in New Orléans, USA. A city steeped in history but a little scary at times, however renowned for carcinoid patients. I had a consultation with Dr Woltering and Dr Wang who are very well-known in the NET/Carcinoid Cancer Community for their expertise on my specific cancer. On arrival both Dr’s clarified my fears of what I had suspected for months and had previously questioned with Oncologist. Their recommendations where to have more surgery on the liver to remove tumours, review the bowel as its questionable and remove the ovaries for precaution. The outcome would be that my quality of life would improve and prolong my life. Now that’s a result.
My husband and I got some relief and renewed hope because my life is a constant struggle. Upon my return to Canada, I had an immediate appointment with my Oncologist, who was clearly eager to know the outcome of my recent appointment, it wasn’t how are you doing, it was more of a case what did New Orléans say. Upon telling my Oncologist he dismissed the extra tumours on the liver. He clearly got hung up on my ovaries, which to me was the least important feedback given. However he did accept the recommended medication proposals and he also acknowledged that my recent labs suggested more tumours. Now there’s a contradiction straightway you don’t have tumours but you do have tumours.
I have to be honest and say in the last 12 months, I have felt very frustrated with my Oncologist. I find that his actions are reactive rather than preventative. What I mean is, such as last May, I was rushed to hospital due to pain, which was dismissed by him and I ended in hospital. Having yet another emergency operation on my appendix and where neuroendocrine tumours were found. I have many examples but I think my post says it all.
Following my appointment with my Oncologist, he had arranged for a follow-up appointment with my NET Surgeon. She is an excellent NET Surgeon but her bed side manner has a lot to be desired. We have all dealt with doctors like that and we continue to allow it too happen, maybe because if you complain we all think it may affect our future health care. I did kinda of suspect how the appointment would have concurred as I had felt my Oncologist was singing off the same hymn sheet. She is more senior and appears to be head of the Net Team so there is regular round table discussions. As predicted the appointment went terrible, there was 5 of us in the room , my husband and I, the surgeon and two resident doctors. To cut the story short she walked out the room leaving us all open mouthed wondering what just happened. Our appointment was meant to be 1pm but due a patient emergency we were waiting for over 2hrs and my personal nurse said I can rearrange your appointment to save you waiting as she was going into an operating room. We agreed an appointment two weeks later given me to time recover from my future spine surgery, however on the way home we got a call asking could we please come back as she wanted to see us. My cynical mind says she is clearly eager to know what her fellow professionals have recommended. We didn’t get back to the hospital until 4.45pm due to traffic, yet she was happy to leave us waiting for a further 30 – 45 mins before coming into the room. The appointment was horrendous and she came across both very patrorising and unprofessional. It was clear she had dismissed their opinions and I don’t know if it was just a case of professional rivalry or ego.
I must say I do have the up most respect for her surgical abilities and everyone you talk too feels the same. I met another one of her patients in hospital this week, I didn’t mention my recent incident as I do believe in professional integrity, however the patient clearly said she was an amazing surgeon but her bedside manner has a lot to be desired. I don’t know if her manners have ever been questioned by the local health authority etc or is it just accepted/ignored because she’s an amazing surgeon, I think the latter.
I started to question things again, Why oh why, do we take what they say as literal, why do we never challenge them and why are they the only profession that we put on a pedestal. Any other professions we will challenge and seek alternative advice. I have an amazing Family Physician who continues to deliver for me. My Spine Surgeon is amazing too and even said to me on Friday “let me worry about you and your spine issues not you” Lol. There are doctors and nurses who are very compassionate and treat you with respect. I like to be treated like I would treat you and that’s always with care and compassion. As an Engineer/Building Surveyor every client of mine was treated with the same level of service, my goal was for them to walk away with the results they required and to be satisfied. I believe that I did meet that as I had never received any complaints even whilst doing enforcement action of an unpleasant nature.
On Thursday I had my 4th lumbar spine surgery, I’m at home now resting and hopefully I will be pain free and have no more limping. My Spine Surgeon is going to check some other areas of concern through MRI’s and I will do my due diligence and keep a track on that too.
I will continue to fight for my life, what do I have to lose really. We can’t prevent someone from getting cancer but we can put in place both reactive and preventive measures. I am here today with Stage 4 Cancer because doctors were diagnosing my symptoms to generic problems. I have to take on some responsibility for not challenging them more over the years and allowing myself to be fogged off. I have an obligation now to fight for me, my family & my friends and I can’t/won’t allow doctors to continue to dismiss my concerns without justification. I have both visual/written evidence and I will use this to hold someone liable if I need to get the care that I require. I shouldn’t have to be fighting for my life and my care.
All I want is what I’m entitled too 🆗
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