I got some preliminary scan results yesterday. It hasn’t been reviewed by all the experts yet but my oncologist doesn’t think from a first look that there’s been any progression since the scan 6 weeks ago. This is obviously hopeful but not clear cut. I have to wait for the complete review and report and in the meantime I’m still contending with what even just no progression means.
To be honest. Completely raw, open and honest, the appointment was awful. A real example of how sometimes doctors, and before I say this, it is absolutely not a personal attack but a raw account of how hard it is appreciate the nuances of each and every patient and what is right for them.
This stems from being told yesterday that my options are still limited to palliative chemo which over the last 6 weeks has left me broken, unable to care solo for myself, let alone my daughter and not, in my view any kind of sustainable solution.
I’m angry. I’m raging. I’m going over and over and over the words, the expressions, the movements of my appointment.
What did they mean, why did they say that, why did they not do this or that.
I thought we got each other. I thought they had more respect. I thought a little part of them understood. How can they not?
I can see them trying but they’re so far away. It’s my life they’re diminishing. Not life and death but LIFE. It’s not one or the other. Maybe for some people it is. Life at all costs. But not me.
I just can’t see it like that and I won’t give up just because they don’t know another way.
We have to find a solution that might be hard, taking mountains to move and be completely different to ‘protocol’ but we must find it. I am not protocol. I am Cordelia.
My little alien.
When most people would crumble you find the energy to get stronger, look harder, and find things others would never even think of. Like you haven’t been here before and don’t understand why they do and say the things they do.
Your body reacts and responds in ways other’s don’t. In ways in which you’ve been told is not possible. Not “normal”.
But that’s because you aren’t normal.
In the best possible, most awe inspiring way, you are definitely not normal. You are Cordelia – my little alien.
X
I’m screen grabbing this wonderful response from Laurie 😍 it is so so SO true. Your beautiful body and brain have been doing things contrary to what is expected from day 1. We’re all here with you. The only way is UP my beauty ❤️❤️❤️❤️
Totally agree. People who become doctors, also become people who have a huge responsibility to other people. A large part of this responsibility is to do with connecting with their patients, being empathetic and doing their very best to understand them. I am so very sorry this was your experience. I have recently started following your journey and I think you are amazing! Your strength and optimism are inspiring and love just shines out of you.
I just want to say I love you
Where there is life there is hope so hard as it is and physically and mentally you are exhausted but never give up hope. We are praying for you love. Your scan shows your cancer is stable so take a day at a time. Contact your Specialist in Germany and see if he/she can offer anything more than NHS (just my thoughts) 🙏🙏🙏❤️
First want to send love Cordelia and a gentle hug. Secondly I’m so sorry your appointment wasn’t more empathetic and patient centred on you. Not the text book patient. I feel medics are excellent when dealing with a straightforward tick box diagnosis. However once it comes to alternatives to what they’re offering or not offering as case may be they can’t seem to think outside the box. Basically as far as they’re concerned you’ve reached the palliative care option. Job done. Whereas you are an independent individual who wants to explore and research other options with their support.
I’m sorry you’ve found yourself in this situation. I just want you to know I’m here and thinking of you xx
You are a very special person! Sending Much Love & Hugs 🫂 xxx ❤️
As a retired health care professional (midwife) – I hear you!
You are NOT a protocol. But very sadly we, as health care professionals, are bound up by the very things you are not: protocols (and guidelines).
As a practicing midwife we had to mentor trainee midwives, one of the key messages I used to instil asap was that midwifery is a balance of Art and Science, of wisdom and guidelines, all sitting alongside the 3 H’s: Holistic, Humanity and Humility.
We were bound by our Code of Conduct and the NHS trust guidelines and protocols. However that shouldn’t strip away our humanity.
As a midwife, sometimes you have to have very difficult conversations, impart devastating news, life changing news, however there are ways of doing so, that: help soften the blow (just a teeny bit), that let the woman/couple know, that even in the darkest moments, they are still in control-they have options. Above all that they are been heard, listened to, valued and metaphorically cradled, every so gently in your professional arms.
All health care professionals have a duty to adhere to protocols BUT they should also have the humility to respect that you are not a protocol, you are an incredible human being, an amazing woman, who finds herself on a journey she didn’t choose, but is doing her upmost to navigate this journey-gently, positively and hopefully.
I’m so sorry you had such a negative experience.
Thank you for inviting us on your inspirational journey.
I hear you x
I’m so sorry for your experience. As a doctor myself, it is a privilege to be invited into patients’ lives during their most vulnerable, saddest and sometimes happiest moments of their lives. Doctors are humans and they have bad days, but we must always do our very best to see each and every patient as individuals, to show kindness and to really see and hear them. Patients and people may not always remember what we did for them but will always remember how we made them feel. Sending you love and hope, always xx
Like always, you seem very able to be open true and honest in your feelings. We are all here to listen to you. Everything you feel is obviously correct, because that’s how you feel. However, your strength and fight, even when you are so negative, continues to shine thru. However the doctors are, let them be doctors, they might not be touchy feely, like some of us are, but the way they say what they say didn’ doesn’t change you. You are Cordelia, you are a fighter, you are sensitive, you are alive, you are a caring loving person that loves and have many people that love you back. No one’s inability to say things the way you’d like to hear them can change you, as long as you continue to be you. That’s how I feel anyway. If I don’t see it like you do, I’m sorry & don’t mean to be insensitive in any way. We are all with you whatever. x