Category Archives: Hospital

Reflections of an appointment

I started writing this blog post 12 months ago and had put it to one side then because I wasn’t sure that the time was right to share all that was going on with M’s care at that point, particularly when it came to expressing my hesitation about whether the decisions being made were the right ones or not. Today we find ourselves in an even more emotionally charged situation and are becoming increasingly vexed with the marked lack of progress made over the last year. I revisited this original blog post tonight and decided that it now feels right to express that turmoil and the frustration in dealing with a medical team that appear to have lost their impetus to engage with us and with M. Those words written in italics are about our current experience.

There’s been lots going on over the last 6 months as many of my blog posts about our mini adventures have shown, but the one area I haven’t yet shared is the journey we’ve been exploring with our local consultant as I briefly mentioned last November. The decision to move almost all of M’s care from GOSH to our local hospital has not been an easy one to make, but for many reasons we have concluded that it is possibly the best one for now. Having a complete MDT (Multi-Disciplinary Team) close at hand to discuss all the challenges of M’s health has been invaluable and experiencing first-hand their willingness to see him at the drop of a hat over a 6-week period, where we’ve had 2 “emergency” appointments and 1 planned one, has been a relief, especially when you consider the problems we’ve had with them in the past.

It sounds fantastic doesn’t it? An almost perfect solution to meeting the complex and on-going medical needs of M; and yet, I would be lying if I didn’t admit that we’ve had our ups and downs with some of their suggestions and have not yet found ourselves moving on and making progress from the starting point we had 12 months ago. The overall opinion held is that M’s ongoing problems are not really related to his EGID diagnosis or the numerous foods we have previously identified as being unsafe, but rather a physical problem that is massively affected by psychological influences that are still to be fully explored and identified. We don’t disagree that there absolutely has to be a psychological element to M’s health: how can any child live through the experiences of his first 12 years and not be impacted in that way? But it also feels as if they’re throwing the proverbial baby out with the bath water and ignoring all of M’s physical symptoms from birth to 5, a time when it was impossible for him to have developed any fears of new foods or associations that certain foods would cause certain health problems.

It’s been challenging for us to adjust our thinking and look to embrace their suggestions of how to move things forward for M. Experience is constantly nagging at the back of my consciousness, gently reminding me that so many times I have been proved to know my son far better than the doctors treating him; but Mike and I have both worked hard to be positive about their new ideas because ultimately we want what is best for M and what will improve his quality of life beyond his, and our, wildest expectations.

In August 2017, my thoughts stopped there. I wanted so desperately to believe that things were going to change, to improve for M and it was, I think, a conscious decision to not air my hesitations and doubts because I was afraid to unwittingly jinx the improvements we were hoping would come about. However, nearly a year on and things have not changed at all. I now have a child who has struggled his way through the first year of secondary school and has lost the spark that makes him him. M no longer sees a positive in being treated at our local hospital and just wants to return to the care of GOSH, which is the last place he can actively relate to seeing any major changes to his day-to-day living. He has gained a couple of extra foods, but we are only at 9 (chicken, rice, cucumber, apple, pear, parsnips, bacon, onion and banana) and not the 20 that his consultant expected when we met him at the start of June.

At that appointment, the entire MDT acknowledged that M is not the child they knew 12 months ago and commented on his lost enthusiasm for choosing new foods to trial. I have tried so hard to explain to them that I am certain that M is not thinking his body into failing those challenges, but none of us really knows that for sure. The truth is that there are some foods that cause an unquestionable reaction and with others it’s difficult to judge if they’re causing an issue, or if it’s simply a case that we’re not really giving his body time to rest and recover between each trial. I’ll be honest, we’ve decided to relax the rules a lot at key times because it’s becoming increasingly evident that M needs the emotional boost that occasionally being able to eat more “normally” gives him. However, every decision to eat something we wouldn’t usually allow brings with it a set of consequences that are difficult for us all and not just for M to process.

I don’t know where we’re heading or what the next few months hold for M. The one thing we’re all agreed on is that we can’t keep living the current status quo because every day like this destroys another small part of the confidence we have in his medical team and buries his spark even deeper.

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A Brewing Storm

Yesterday a social media storm hit the EGID world, especially for those of us who are, or who have been, under the care of Great Ormond Street Hospital over the last few years. The reason? A story published by The Guardian newspaper on Saturday night, which has raised questions about the treatment of patients of GOSH’s gastro department following a huge number of complaints from parents and successive reviews of care carried out by the RCPCH (Royal College of Paediatrics and Child Health) since 2015.

As a parent to a child with an EGID diagnosis and one that was given by GOSH at that, this story is heart-breaking and yet one that I know needs to be told. Whilst M has never been subject to the “aggressive treatment” described in the reports published by The Bureau of Investigative Journalism (see here and here), we have struggled with our own issues rising from some of our experiences during inpatient admissions at GOSH and I have always been open and honest in sharing these via my blog. We have made complaints, challenged M’s consultants and spent time talking to the Chief Exec to try and make sense of it all and improve the way that, not just M, but other children have been treated whilst they’re there.

Last summer I shared my fears about the huge question marks that have been hovering over the EGID diagnosis for a while and how they could impact on the treatment and care that M receives from the medics in our lives. This week my fears grow even greater as the TBIJ documentary investigating these allegations about GOSH will be aired on ITV1 at 10.40pm this Wednesday, April 18th. Whilst I know that the documentary is seeking to reveal the truth behind some of the treatment decisions made for certain families, there will undoubtedly be concerns raised about the veracity of the diagnosis of EGID itself and with that comes inevitable questions about whether any of those diagnosed with EGID are genuinely living with it, or not. Comfortable viewing it may not be, but I will be watching it – and probably keeping my eye on the resulting social media frenzy too.

At the end of the day, I’m not really that bothered about what the label itself actually is for M – EGID, MCAS, food allergies or something else – as all I want is a better life for him and the others who find themselves in the same boat. As I said last year,

“For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.”

*You can read a more in-depth, first-hand commentary about this GOSH story here

Taking Over once again

In November 2016, G and M were lucky enough to be invited to participate in the first ever Takeover Challenge at GOSH. They spent the day running the Development and Property services department at the hospital and even managed to somehow convince the staff to take them onto the building site of the new research centre being built opposite nearby Coram Fields. One of the jobs they had undertaken during that Takeover Day was to help design the hoarding to surround the building site and we were delighted to see it in place when we visited GOSH for the Big Youth Forum Meet-Up in mid-October as both children got to see their hard work actually being used in real life.

 

So it will come as no great surprise that the minute they heard that there would be another opportunity to Takeover at GOSH this year, both G and M leapt at the chance. Unlike last year, when they opted to be part of the same department, this year they determined to do different things and each took on very different roles with G joining the ICT department as an ICT project manager, whilst M became a clinical scientist for the day. We were fortunate that their secondary school recognised the value in them attending this day and were happy to authorise their day off, something that M in particular was delighted about. I was already in London for the week attending the Foodmatters Live conference and so Mike set off from home extremely early on the Wednesday morning to get the children to the GOSH reception area in time for their respective days to start.

We had arranged that I would meet up with them for tea and over an early supper at Wagamama in Leicester Square, I was regaled with excited tales about the adventures of their day. G’s day was spent learning about how the ICT department is involved in the day-to-day running of GOSH and more specifically understanding how the staff ICT helpdesk is run and looking at solutions to common IT problems. G had an opportunity to visit different hospital departments and help resolve the problems some staff members were experiencing and even managed to successfully close a couple of cases herself. Her final task of the day was to visit the brand new clinical building that has recently opened at GOSH and understand how the decisions around what ICT equipment to provide for patients are made. One of her mentors for the day also took her to visit one of the laboratories in the hospital knowing that M was based there, although she didn’t spot him during her visit.

M’s day was focused on understanding the role of the clinical science team at GOSH and in particular learning more about gene and cell therapies as well as the research that is undertaken in the hospital. He was keen to take on this role because of the rare status of his own condition, EGID, as it demonstrated just how important this type of research is. M spent the day  learning how to split blood samples into different cell types, preparing the cells for analysis, generating DNA fingerprints and analysing DNA for mutations. The team also showed him what eosinophils look like when they’re put under the microscope and gave him an insight to what his scopes might have looked like prior to his diagnosis. As usual, M learned a lot from his day and when he and I attended our local hospital a week later for a set of bloods to be taken, he was keen to explain to the nurses there just what would happen next with the samples they were taking from his arm.

Both G and M had an amazing day at GOSH and we are, as ever, extremely grateful to the YPF and youth liaison team who not only offered them this fantastic opportunity, but also made sure the day was a huge success for them both. I know M already has his sights set on Taking Over yet another department next year, but we will just have to wait and see what happens!

A Winter-themed weekend

For the 4th year in a row, I found myself not only in London, but also spending a little time at GOSH during the weekend closest to G’s birthday. Thank goodness that this year there was no admission attached to what is fast-becoming a December tradition, instead, just like last year, our reason for going was the December meeting of the GOSH YPF and with both G and M now active members of the YPF, we decided to make a weekend of it and round off the birthday celebrations in style, whilst gently kicking off our Christmas ones as well.

In the lead up to a previous YPF weekend, I was lucky enough to stumble across the Travelodge in Hounslow, which has quickly established itself as our destination of choice whenever we need to head to London for the weekend. A lot more affordable than central London prices, it is a short walk away from a secure car park and both the East Hounslow and Hounslow Central tube stations, making it an easy commute into GOSH in particular as all are stops on the Piccadilly line. This close to the end of term, we were able to take advantage of the fact that the out-of-school activities have now finished and headed to London on the Friday evening once G and M’s school day was over, and even managed a reasonable night’s sleep before our busy winter weekend began.

It started with our morning commute to GOSH, where we dropped G and M, both kitted out in their Christmas finery, for a YPF meeting filled with a whole host of activities and treats, including a hotly challenged Christmas quiz. Once the children were settled, Mike and I set off on foot towards Covent Garden and spent our day meandering the streets, exploring the shops and even managing to pick up the odd present or two as well. We stopped for a light lunch at the amazing Cafe in the Crypt at St-Martin-in-the-Fields, just off Trafalgar Square. This is fast becoming one of our favourite spots whenever we are in London as the food they serve is simple, yet delicious, they serve a few allergy-friendly snacks too and is a place I would heartily recommend to anyone looking for a peaceful break from the busyness of London itself.

Lunch done, we started our trek back to GOSH along Shaftesbury Avenue and stumbled across this group of festive, charity bike riders as we turned the corner towards our final destination. It really was a sight to behold as we were surrounded by Father Christmases as far as the eye could see and lovely to watch excited small children wave and shout out Christmas greetings as the cyclists sped past.

 

There was one last stop I wanted to make before we met G and M and that was at the Baileys Treat Stop pop shop located not far from Covent Garden. It was only open for 2 weeks and I was determined to take advantage of our trip and pay a visit there for a Baileys-inspired hot drink. The queue was long and it took over 40 minutes to finally get into the shop itself, though our patience was well-rewarded by the plethora of treats that was brought out to keep those waiting happy – chocolate eclairs filled with Baileys-infused cream, cups of popcorn and chocolate covered Baileys fudge and toffee. I finally made it to the front of the queue and having never tried their Pumpkin Spice version and not fancying a treat-laden hot chocolate, I decided to customise a Pumpkin Spice latte instead. I think the server was a little disappointed with my rather tame selection of “just” chopped nuts and wafer straws, but despite his best efforts, I held firm to my decision, which I maintain was absolutely the right one. However, the latte itself was incredibly disappointing and absolutely not worth the time and money I’d spent to get it. What I hoped would be a small Christmas treat for me really wasn’t and we wasted close to an hour with that detour.

However, the rest of our Saturday went according to plan and was a fantastic ending to G’s birthday celebrations. Both children had a great day at the YPF meeting and came away with some small and unexpected gifts and treats. G was really keen to have a Chinese meal for dinner and so we chose to double up M’s medicines throughout the day and then allowed him to relax his diet for the evening. Mike and I had done scouting around Chinatown during our day and we headed to the Feng Shui Inn for a few carefully selected dishes which the whole family enjoyed. From there, it was just a stone’s throw away to the Prince Edward theatre where we were treated to the delights of Agrabah, the fantastical quirks of the Genie and the addition of a handful of new songs to Disney’s Aladdin. This was G’s choice of show and I knew she’d enjoyed it when she asked at the end if we could see it again! It was an amazing production and we were incredibly lucky to see Trevor Dion Nicholas in the role of the Genie, a role he was reprising after a successful stint on Broadway.

Sunday morning saw another tube ride into London, though this time our destination was the Tower of London where we had booked an ice-skating session on the rink set up in the moat. Both children were keen to have a go at skating once again and Mike was just as excited. It took a little while for G and M to find their feet, but they were soon off and even attempting to get around on their own, away from the barrier. The session only lasted 45 minutes, but that was more than enough for all of us and M and I even left the ice a few minutes early due to the uncomfortable hire skates we were wearing. All in all, we had a fantastic and fun-filled family winter-themed weekend and it felt like a fitting end to what has been a long school term.

Big Youth Forum Meet-up

In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.

Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.

After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.

From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.

NEAW 2017 – His illness does not define him

Our life experiences influence our view of the world that surrounds us. Good or bad, everything we do or see or hear or learn will affect our outlook on life, on whether we become individuals who see that hypothetical glass as being half-full or half-empty and how we react to our interpretation of that reality. When you’re growing up with a chronic illness as your one constant companion, it can come as no surprise that that condition begins to shape the person you become and the relationships you have with the rest of the world.

Rightly or wrongly, I have encouraged M to embrace his EGID diagnosis and become an advocate for himself and others living with it. M is, without a doubt, so much more than this disease and yet it is an integral part of the young man he is growing up to be. Our local gastro team are keen that M doesn’t view himself as a “sick kid”, that he doesn’t let his diagnosis stop him doing whatever he wants to do or being what he wants to be and those aims sit well with our approach to helping him cope with it all. However, I can’t and won’t agree to ignoring the reality of his life – the numerous hospital appointments, admissions and procedures; the daily medicines; the restricted diet and 12 months with a NG-tube mean that he is not like his friends, like other kids his age. In the last year alone, M has been seen at our local hospital over a dozen times and that does not make him the same as the rest of his classmates. Despite everyone’s best efforts, 2 and a half years after that first feeding tube was placed, M still only eats 6 safe foods on a regular basis and that makes him stand out from the crowd, not just at school, but at every activity or event he attends. He is, in all truth, a “sick kid”, but that label does not sum up who he is as an individual.

No matter what the medics suggest, I can’t pretend that all those experiences didn’t happen to him, to us as a family, but I will endeavour to make sure that M’s illness is not all that defines him.

Yes, he’s a child who cannot eat the same as his friends; but he can eat out and enjoy food with them.

Yes, he’s a child who lives with constant pain; but he has learned to ignore it and overcome it and achieve despite it.

Yes, he’s a child who spends too much time in hospital at medical appointments; but he is developing a confidence to question and understand and advocate for himself.

Yes, he’s had experiences that most adults I know would struggle with; but he has developed tremendous courage and an increasing self-worth in who he is as an individual.

The truth is that, just as my 30+ years with T1D has shaped the woman I’ve grown up to be, M’s life has been, and will continue to be, affected by his EGID diagnosis. We cannot pretend that the difficult times haven’t happened, we can’t airbrush them out of our family history and it would be doing a disservice to the fortitude and bravery of both my children if we tried to do so. They are so much more than the sum of their parts and whilst EGID has an unquestionable influence on the individuals G and M are becoming, it absolutely does not define either of them in their entirety, and nor will we ever let it.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

NEAW 2017 – Living with the unknown

2017 marks our 5th National Eosinophil Awareness Week and yet, in many ways and for many reasons, this year may be one of our quietest yet. One of those reasons is that over the last 12 months, we have experienced a significant shift in the way that M’s doctors view his diagnosis and that change, along with the inevitable amount of growing up that is going on in our household at the moment, means that life has become about a lot more than just the label we’ve been handed to explain his medical condition. I’ll be honest, that transitioning medical opinion has been difficult to live with because it has challenged the very way we’ve coped with the last 11 years of our life and has demanded that we examine closely all of those decisions we’ve made believing them to be in the best interests of both our children and not just M. It has made us sit back and question whether we’ve been choosing and doing the right thing.

This seismic shift that we’ve been experiencing is not isolated to our experiences or even to our part of the world, but rather appears to be part of a nationwide change in the understanding, and even the diagnosis, of Eosinophilic disorders themselves. As a parent to a child with this diagnosis, the prospect of moving away from recognising Eosinophilic Disease as a genuine medical condition is a daunting one. Whatever title you want to attach to this little-recognised health issue, the hard facts are that those diagnosed with it are struggling and suffering on a daily basis and removing the validity of its name does not, and will not, remove the reality of the problem itself. The steps we have taken over the last 4 years since diagnosis have not always been easy ones, but without a shadow of a doubt, they have been ones that have seen much improved health for M at times when we have had to make what are unquestionably the toughest of choices.

Similarly, we are not the only family who has found itself moving away from the care provided by GOSH over the last couple of years – some have moved by choice, whilst others have had little or no say in the matter. In our case, our GOSH consultant and dietitian recommended we sought local input into his care because they had reached a point where they could find no explanation for why his body reacts as it does and felt that a fresh pair of eyes might be able to give us different insight into how to go on from here. The last 8 months have been extremely challenging for us all as our local consultant has made suggestions that we are not always 100% on board with and it has taken unbelievable courage on the part of all in our family to even agree to try new things that no-one really knows will succeed in the long run. The jury is still out on whether we are currently heading in the right direction with his care and truthfully only time will tell whether the decisions we are making this time round are the right ones or not.

Without any funded research into the complexities of gastrointestinal disorders, individuals like M will always be at the mercy of what can only be seen as an experimental approach, as diet, medicines and psychology are discussed and considered and tweaked to produce the best possible outcome on very much a “trial and error” basis. In our experience, we know that food plays a huge part in the way that M’s body behaves and the medicines he’s currently on appear to be doing their job of dampening down the body’s reactions to everything he eats. Likewise, we agree that there is a psychological element to it all and have had our concerns about the psychological impact of a chronic illness on his mental well-being. Sadly, where we have currently agreed to disagree with the medics is whether the psychology plays a bigger part than the physiology when it comes to M’s day-to-day health and responses. Yes, we know that stress can wreak havoc on the digestive system of just about everyone, but we will not be swayed in our belief that it is more than that for M. The hard facts of our 11 years with M show us that his health challenge is unquestionably a physical one and we will continue to fight for greater understanding of Eosinophilic disorders and how they affect everyday living for those diagnosed with them.

This week is about raising awareness of EGID and sharing our experiences – the good, the bad and the ugly – of living with it. For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place:

Giving something back

23567358210_2327dd548d_mAs we counted down the days to Christmas within the confines of GOSH last year, one of the seasonal highlights for both M and me was the carol-singers that we encountered during our stay. Hearing the gentle strains of familiar carols outside the main entrance, within the beautiful chapel and along the hospital corridors helped us feel a part of the excitement building in the outside world, even though M was ward-bound for so much of the time. I was fortunate enough to be able to go to the Carols by Candlelight service at St. George’s Holborn, a church just across the road from the hospital itself 23104290053_5ffd34741a_zand M, Mike and I had great fun another evening joining the choir from All Souls Church, Langham Place as they sang their way around GOSH, serenading patients with their cheerful Christmas singing.

Knowing how much those experiences lifted our spirits during a difficult and emotional time away from home, I leapt at an opportunity this year to give a little back. One of the choirs I sing with was invited to spend an afternoon singing carols and Christmas songs at a regional Children’s Hospice, whilst one of the local football teams delivered presents and spent time talking to current patients and their families. It had been an occasion that I’d been hoping to take part in last year, so as soon as I heard we were invited back this year, I knew that I just had to be a part of it if at all possible.

img_13021Yesterday was that day and what a truly magical experience it was. A small group of just 9 of us gathered and spent the afternoon singing carols and Christmas songs to the children and their families, who are so dependent on this Hospice to provide some precious moments of respite during the year. I took the opportunity during our visit to speak to staff members, parents and even some of the children themselves and gleaned just a small insight into how important this Hospice is to them all. There were no tears yesterday; just a celebration of the individuals gathered in those rooms and an opportunity to make memories that will last a lifetime. When favourite songs were requested, we gladly sang them to bring a little extra cheer to what was already an amazing party. I gently persuaded – ok, 15578155_10154311119488790_2228089488536286007_operhaps, more honestly, I coerced with a cheerful smile and a little Christmas spirit – some of the footballers to join us for a rousing rendition of “The Twelve Days of Christmas”, which ended with friends, family and staff also singing along and sharing in the joy of that moment.

We received thanks for our attendance again this year, but the truth is that we received from the experience far more than we gave. It was a huge honour to be able to be even a small part of a fantastic event and, for me, a real opportunity to give something back to families that are living through a reality that reminded me just how lucky our family truly is. Not everybody can sing; not everybody will be able to offer practical help, but if you can find a way to #givesomethingback this Christmas season and beyond, please do.

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Indescribable fear

b6e83c2b62a1e0ec0cd3fbc189efbc94When 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.

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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.