Here we go again!
Hospitals have and still are a huge part of my life. Being born with a cleft lip and palate has meant that I have got to know many, many hospitals over the years. Today I visited Royal London- one I have been to only once before. Hospitals intrigue me, they always have. People are so busy bustling around them, I don’t think many stop to appreciate the absolutely amazing work they do on a day to day basis, with limited budgets and over stretched resources.
Without the consultants, surgeons and cleft team I have had across the years, I know my journey would have been a tougher one. I am lucky to have been born with the support network around me, and a brilliant Cleft team to help ‘fix’ me and advise my family on the best route to take. If I had been born in a different country or even a different city, this journey could have been very different.
I don’t remember many of the operations from when I was a baby (for obvious reasons), but I am reliably informed I had my first operation at 3 months old to correct my lip and it has all gone from there.
Since that very first operation- 21 have followed and another one is well on it’s way, in the summer. There are so many memories I could write about across those 22 operations (so far). For example, there is the time I had to ring the emergency bell because my mum got locked in the toilet, or when my sisters decided it would be a great idea to wrap a present they had bought me in multiple layers of wrapping paper and get me to open it, just after I had come out of hospital, from under anaesthetic, for arguably my biggest operation. However, there are 4 major operations that stick in my mind. that I feel I should write about; 3 of them were always in the plan, 1 not so much!
The Bone Graft
This one I had in Year 5. This was a fairly tough surgery for myself and my family and it took a long time to recover. Our family have a joke that Lisa has 3 sets of teeth, 1 which was stolen from me. Whenever hers came out, another one would just grow in it’s place. I was the complete opposite, a tooth would fall out and I wouldn’t get another or it would take forever to come back. This bone graft took a little bit of my hip and put it into my mouth to help form a bit more jawbone than I had, but also to make a tooth (somewhere…you can probably tell I’m not completely on the medical terms- sorry!).
I was in hospital for a week following this operation, and spent a lot of my time in bed or sitting in a chair. It was a frustrating time for me because I was so used to just getting up and going, doing sport and staying active. So for me to be told I had to take it easy, and not being able or allowed to walk 100 metres without being absolutely shattered was a shock to the system. I got so tired that I would go down to the cafe with my mum and would have to sit down every couple of minutes on the way to rest. The medicine they gave me, combined with the anaesthetic made me very sick and I got an infection which delayed the recovery even further. When I eventually was allowed to leave hospital, I was not allowed back to school as I was still unsteady on my feet, and getting very tired, very easily. I would walk Lisa to school, have a rest and then turn around and walk with my mum back home again. That was the first time I realised how massive that operation had been and how much it had taken out of me. On the other hand, it prepared me for what was to come.
Jaw Surgery
This one was always going to be the big one, the most major and the last one. My jaw surgery was supposed to be the final surgery in a long line and the coming together of 21 years of treatment. But for reasons that will become clearer further down the blog, this wasn’t the case. It was decided that both my jaws would broken during the operation and metal plates would be put into each side of my jaws to keep them stable.
After the operation my jaws were bound together using very tight elastic bands fixed to my braces. These elastics stayed in place for 3 months, so as you can imagine eating was difficult! On my first night in hospital the dinner came around and as I was still sleepy, the nurse chose something for me once I properly woke up…. she chose cornflakes, then chicken and potatoes. Finally, she chose me a packet of biscuits. Now… eating solid foods hours after jaw surgery is more or less impossible and none of that food got eaten that evening. My mum brought me yoghurt and a straw the next day and all was well. That straw became my best friend for the next 3 months as I was purely on a liquid and mushed food diet. I lost over a stone and a half- but it is defintely not a diet I would recommend! I still get a funny feeling when faced with Cottage or Shepherds Pie for Sunday lunch.
I remember so much about this operation- My family came to visit and Dr Ayliffe allowed them into recovery (that never happens!) to visit me. Both Lisa and Ciara tried to talk to me whilst in there and I would get through one or two sentences and promptly fall asleep again, only to wake up 5 minutes later and not remember much about the conversation we had just had. I also have the habit of trying to prove I have more energy and I am more OK than I actually am after operations. On this occassion to do this I pulled the oxygen mask I was wearing off of my face and outwards to try and talk and Ciara had to grab it before it pinged back onto my bruised and swollen face when I fell asleep once again.
This jaw surgery was big and it took a long time to recover again. But after the swelling had reduced and the bruising gone we noticed something unusual on my left cheek just on the joint between my two jaws- a lump had started to grow. At first we thought nothing of it, but it continued to grow and grow until it was maybe the size of a eyeball and it became quite concerning. This concern led to the next operation on my list- Bob.
Bob
If you ask anyone in our family who Bob was, and what Bob was they would be able to tell you. He became like another part of the family- the lump on my face that to this day we don’t know what he was. I went back to the hospital and they sent me for test after to test to work out what had caused this weird thing. They even sent me to the Hospital for Tropical Diseases and the Macmillan Cancer Centre to try and find answers. Nothing was found, and so they decided the best thing to do was to cut it out and remove the plates from that side of my jaw.
It was a straight forward operation, no long recovery and just an annoying bandage on my face for a little bit. The downside of this operation being a scar about 2/3 inches down the side of my face and dog ears at either end. Due to the lump (cyst) being round rather than long it couldn’t be cut out neatly and stitched up with no remains. This operation led to 2 more ‘tidy up’ ones and eventually we decided enough was enough and stopped trying to get rid of the dog ears. The upside of this operation- Frankie was born. No longer do I have to think of Halloween- I always have Frankenstein to fall back on (I joke of course), but the name stands- Bob was no more but Frankie lives on.
Septorhinoplasty
Here we are at the final operation(s) I am going to write about today- this is longer than I’ve ever written before. So far I have had two operations on my nose along with some cartilage harvesting for other bits too. The first operation went well, my nose was broken, cartilage and fat taken from my leg, and the nose repositioned as best as possible. But as the swelling again resided, My Ayliffe wasn’t happy and felt we should go again, this time using cartilage from my septum to help straighten it out and give the nose more shape.
The difference between the first operation and the second was in the first I was called back a day later because the packing hadn’t been removed and this should have been done before I left. In the second, during the night, I was put on oxygen as there wasn’t enough getting in and around. Both times were weird experiences, but both completely different.
After I came out of hospital after Nose Op 1, Lisa dragged me, on my crutches and in my nose splint, into town to have a coffee and get some ‘fresh air’. She is not one to sit around! Whilst in town, I sat waiting for our coffee to arrive with Lisa, when an old couple came to sit beside our table. They kept looking over and I kept turning to smile, and acknowledge that I knew they were looking. The lovely old lady then preceeded to ask me what happened? Had I been in a car accident and that I looked pretty bashed up. I just smiled, told them I had, had an operation and left them to carry on their day. Whilst drinking our coffee a little girl came and stood staring at us, or me for a good 5 minutes until she was stared down by my ever protective twin sister. We then went for a walk down the market and we came across an older man who was looking at the clothes on the market. When he saw me- he made a beeline and just outright asked ‘Isn’t it embarrassing having to wear that? Why are you out?’. I can just remember thinking, what a funny thing to say, and actually I’m quite tired now, maybe we should go home. These are the memories that will stick with me too, how peculier and interested people are in the unusual and how they react to things in completely different ways.
These were to be the final 2 operations I would have with Mr Ayliffe, whom I had been with since I was 6. It’s a big deal when a surgeon decides to retire and this was bigger than most- to me at least. I had become so accustomed to the way he worked and how things were done, that I never stopped to think about operations after he was gone. I’m not the best with change and this has been a massive step for me.
Today I was told that next summer I am, all being well, on track to have my 23rd operation. Again, they are not happy with how my nose looks, and this is one final try at getting it right. After Mr Ayliffe left, things were up in the air, and I slipped through the cracks, as I was still under GOSH for some things, and under UCH for others. But now we have come full circle and it’s time to prepare for what is coming.
One of the lovely things about going to a new hospital is that some of my old cleft team whom I thought I had left behind at GOSH 3 years previously, work out of the Cleft Clinic once a month from the Royal London. The picture you see above is a picture of Mr Hay, one of the constants in all my treatment and one of the people who listened, took on board my views and advised me best he could on the treatment I was having, due to have, and the long term plan for it all.
These were just a few of the operations that I have had, and I can assure you there are plenty more memories but for now, these are the ones I will write about. I will be forever grateful for the support, encouragement and treatment I have received across all the hospitals I have been in and around. They do so much for so many people and they deserve all the positive recognition they get.
Thank you if you have made it this far, I hope I wasn’t rambling too much!
I must now go and prepare my assembly for tomorrow *gulp* (my worst nightmare!) Wish me luck 🙂
Sinead xxx
What Am I Doing? 