When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.
In November I wrote a blog all about World Diabetes Day 2016 that contained these words:
“The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”
not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.
The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.
The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.
The fear that I might never be able to read or write without aids.
The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.
The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.
The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.
The fear that I might not be able to clearly see my beautiful children’s faces ever again.
Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.
Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.
Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.
So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.
The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.
I am hoping beyond hope that those fears will never be realised, but only time will tell.
Gosh – you’ve really been through it, haven’t you. A roller coaster read too! Wishing you all the best.
Thanks Alex, much appreciated
So sorry to hear that you have been going through this! Take care of yourself and I hope you get lots of rest and fun over the Christmas period. Thinking of you! Xx
Very sorry to about this issue. I hope you will be able to have great help and that this will resolve well. I wish you much peace today and for the weeks ahead.
This item has been referred to the TUDiabetes Blog page for the week of December 5, 2016.
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