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.
When it comes to thinking they know it all and can do it all better than the adults in their life, my kids are world champions. The frequency with which Mike is told that “Daddy, you just don’t understand..” is high and he often finds himself trying to defend his position to an irate 10 year-old, even on matters where he quite obviously has far more expertise than anyone else in the room – think anything building-related given his career as a chartered surveyor. There is a certain level of deference awarded to me, after all I’ve proved over and over again that Mummy knows everything there is to know and, besides which, she really isn’t someone you want to get on the wrong side of ever; but the opinion of just about every other adult is scrutinised carefully and often rejected on the basis that they just don’t understand either. M has some very strong opinions and would, and sometimes has, happily argued the case that the sky is green for hours, often with a reluctant truce having to be declared before World War III breaks out across the dinner table. As for G, well she has perfected the teenage eye-roll ahead of hitting her 13th birthday and it’s often accompanied by a surly shrug of her shoulders and a mumbled “Whatever” as she heads upstairs to the seclusion of her bedroom.
So, you can imagine my thoughts when G and M were invited to be a part of this year’s 
ent and Property Services department as Director and Deputy Director for the day. The information they received in advance told them that they would have a “behind the scenes” tour of the hospital with opportunities to learn about the systems that help the hospital to run efficiently, including visiting the plant room with engineers, learning about the food ordering system and how the meals get to the children on ward and understanding more about how the hospital plans and designs spaces to be fun and interesting for the patients, their families and the staff. Ahead of the day itself, both G and M were asked to complete a profile to be shared with the Development team, explaining a little about why they were interested in this role as well as what their involvement with GOSH is. G had 2 key areas of interest – finding out how the kitchens cater for patients with food allergies and how new spaces and redevelopment work is done – whilst M was eager to see the plant and machinery that makes the hospital run and find out more about the technology in place.
Determined to dress for the occasion, M’s clothes were chosen the weekend before to make sure that everything he needed was washed and ironed, unlike his sister, who typically left everything to the last-minute and was then put out when her first couple of outfits were deemed unsuitable by me. Taking the challenge very seriously indeed, M solemnly told me that I needed to make sure he was in bed early on the Monday and Tuesday so that he could be well-rested and ready for a busy day. Our decision to head to London on the Tuesday night after a Year 6 meeting at his school slightly scuppered those plans and his night’s rest was then further disrupted by a 5am fire alarm in the hotel, something none of us appreciated. The further stress of the drive across London to make sure that we reached GOSH in time whilst being questioned constantly as to when we would arrive, tested my nerves thoroughly, though we did make it – by the skin of our teeth. The hurried unloading of G, M and me just around the corner so that we could dash to the main entrance by 10am as Mike went off to the park the car, was an unexpected drama I could really have done without.
and we are still hearing snippets about it a week on. Whilst both children took over the same department, their mornings were filled with different activities to meet the interests they had already expressed in their completed profiles. M spent the morning with Development Director, Matthew Tulley, the highlights being exploring the roof of the hospital and learning more about CAD. That second activity earned the accolade that “CAD is rad!”, something I suspect will stick with the Development team for a long time. G headed in a different direction to learn more about different aspects of what this department does. She went with Deputy Director Stephanie Williamson and spent the morning planning and designing a new orthopaedic therapy space, which she really enjoyed, though it proved to be a challenge to fit all the requirements into the space available. She then headed to the kitchen to find out a little more about how patient meals are prepared, before meeting up with M and Matthew for their lunch. A big thank you has to be given at this point to Stephanie and the rest of the catering team who did a sterling job at providing safe meals for both children to enjoy. Both had been able to choose their menus before the day itself and the team had taken on board M’s request for either rice pudding or a rice krispy cake for pudding, which he was delighted to see.
There was then enough time to head off to Coram Fields and chair a meeting about the new research centre being built and discuss the hoarding that will be used to surround the site. They even managed to find their way on to the building site, where M’s enthusiasm in particular has earned him the offer of a return visit to see the completed building in a couple of years’ time.
There’s nothing better than finding a hidden treasure and this small cafe is an absolute gem. We were visiting friends who moved to Frome at the start of the summer and on recommendation from another friend, decided to try out 
I’ll be honest and say that we didn’t realise at first that the entire 
M was keen for G to try the “Vanilla Soya Frothy”, which I assume is a vanilla milkshake, but G was determined to indulge and stuck resolutely to what she knows she likes.
Susan mentioned was a fairly small portion and so added the Mezze plate, which included houmous, olives and some delicious seeded crackers. The plates, when they arrived, looked wonderful and the food was absolutely delicious. My soup had that real home-made feel to it, was packed with chicken and tantalisingly fragrant in its flavours. I was impressed with the gluten-free bread, which we were later told is baked off-site in a 
bakery that has an exclusively gluten-free area to make sure there is no cross-contamination risk. G’s sandwich soon disappeared and her hot chocolate didn’t last long either! As for M, he was thrilled to receive a healthy-sized portion of plain rice, topped with 2 roasted chicken thighs and some apple and ginger purée. He was a little disappointed that they didn’t stock any rice milk for him to drink, but was happy with the cartons of cloudy apple juice that were on offer instead. We were all delighted by our fantastic meals, little realising that the best was yet to come.
I have a confession to make. In the grand scheme of things, it’s no biggie and it certainly won’t come as any great surprise to my nearest and dearest, but I have to admit that…
My coffee shop of choice does change on a fairly regular basis, depending on the time of year and the flavoured drinks on offer. For the last couple of years, Starbucks has held the monopoly on my business from the end of September until Christmas, thanks to their Pumpkin Spice Lattes and Black Forest Hot Chocolates, which have unfailingly kept me going during M’s GOSH admissions. As for the rest of the year, well if I’m perfectly honest I’m fairly ambivalent to where my decaf comes from most of the time, but whenever G and I are having some much-needed girls time, Costa always wins hands down. Our recent trip to London for the last 
G always chooses a small soya hot chocolate* with marshmallows and loves nothing more than accompanying it with a gluten- and dairy-free cake. However, this time we were travelling late afternoon by train and I wanted to pick her up a light tea for the journey home. As well as the obligatory drink and cake, G also chose a gluten-free roll and packet of crisps to complete her meal. I was interested to find out just how much she enjoyed her sandwich and whether she’d be happy to eat it again. To be honest, G was a little uncertain about the sandwich as she’d picked a chicken salad roll and she wasn’t impressed that there was tomato in it too, 
but once I’d removed the offending item, she was happy to give it a go and ate the lot, telling me that it was surprisingly filling. The crisps rapidly disappeared as did the mini pecan pies that rounded off her supper beautifully. All in all, G gave her meal 8/10, a decent score given the disappointing inclusion of tomatoes in her sandwich.![IMG_0798[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/08/img_07981.jpg?w=225&h=300)
![IMG_0802[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/08/img_08021.jpg?w=225&h=300)
some progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.
Dr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous 
M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.
cakes or biscuits in our house has been practically non-existent. However, with Mike’s 
a single mini meringue on to the top of each one before serving to my eager husband and child. I will add at this point that neither G or I partook in this particular delicacy – the sharpness of the lemon didn’t appeal to G and the sweetness of the meringue doesn’t agree with me and my T1D tastes. However, despite the fact that only 50% of the family chose to eat these birthday treats, they were extremely well-received and I am reliably informed by both the men in my life that the lemon zest in the pastry when combined with the sharp lemon and sweet meringue was a taste sensation they very much enjoyed.
from the independent sector to a school with external caterers. We did manage for a couple of years once M had started at school by making sure that G and her teachers knew to pick the safe option from the choices given, but once M went MEWS-free in 2011, school dinners became a thing of the past and packed lunches were the way forward.
so that they can work together to provide a healthy and nutritious alternative menu customised for that child. I’m sure that they cannot be the only school to make such efforts, but they are certainly the first I’ve heard about from someone in the know and I was impressed by what she told me they offer.
7 years to diagnosis 