My title might suggest a Charles Dickens book review but rest assured that is not where I am heading with this.
When you live with chronic illness, over time your expectations, of yourself and your medical team in particular, begin to diminish.
In my case it’s not because I don’t trust my medical team or because they have disappointed me. That couldn’t be further from the truth. They have all been amazing in their care, support and passionate desire to try to find treatment options for me.
Expectations diminish though when you know your disease is progressive, rare and disability is steadily increasing before your eyes. There is no escaping that reality. I wake up to it everyday.
Ever the optimist, I do however wake each day hoping that I might get a slight pain reprieve or be able to achieve a few things on my “to do list”. That’s called hope and on some days that hope is realised.
It’s been a while though since I have had the feeling of “Great Expectations”, particularly when it comes to medical appointments. Usually they are routine, follow up type appointments. Just checking blood tests, looking at latest xrays and all agreeing, “yes, the legs still broken and yes the disease is progressing. Sorry still no treatment or cure”.
It’s not quite as matter of fact as that. I do have a great relationship with my Specialists and GP so we also throw around ideas and have a good chat. In general I look forward to my appointments.
This week though I have an appointment that I am really looking forward to. It’s with my Orthopaedic Surgeon who has been amazing in his support of me over the past 3 years. He has been devastated at the little progress my femur has made in trying to heal.
He has consulted so many other medical professionals about my case. He was brave enough to perform radical surgery a year ago, on my other leg, to prevent the bone disease from snapping that one too. As a result of that he inspired other Surgeons to take similar action with complex patients they were looking after.
I couldn’t ask for more. I know that he has felt utter disappointment at not having any further solutions or strategies to manage my non union femur.
So when I phoned his office last week to ask for an appointment to have a chat with him about issues with my right hip, I did not expect what happened. His Office Manager was so pleased I’d phoned…..she was about to call me!! Talk about timing. My Surgeon had been on an Orthopeadic conference the week before and apparently my case had been discussed. He had told his Office Manager, just before I phoned, that he wanted to talk to me. He had to talk to some other colleagues first so an appointment has been made for Tuesday.
I have no idea where this conversation on Tuesday will lead. I feel the simmerings of a mixture of excitement, hope and expectation. My Surgeon’s Office Manager sounded excited and hopeful when I was talking to her. That gives me hope. I know her well after 3 years and she is a genuine, caring lady.
Dare I attend the appointment with “Great Expectations”? Yes, I think I can. I’m being realistic. I know he won’t have a bone disease cure but he may have a new solution to encourage my left femur break to heal. If that break would heal it would reduce some of my pain, at least in that leg and that would be wonderful.
So in the lead up to the appointment I’m indulging in a little day dreaming or surmising as to what might be discussed. I have a few ideas like perhaps a stem cell transplant but I am going with an open-mind.
I have “Great Expectations” that if nothing else it will be an interesting and informative consultation.
I’ll keep you posted xx
If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.
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