Moving On

Hello all, I hope you are well?

Once again, I am up late unable to sleep. This time because I thought there was a burglar in the house. It turns out that a pin board I had stuck to the wall earlier in the day had fallen down...!

I feel as though I must apologise. As I have mentioned before, I do not feel as though I have made this blog what I had hoped it would be: A thorough, no holds barred, documentary of life pre and post liver transplant. The whole experience affected me differently to how I expected and challenged me in a way I could not have predicted - which was partly the point of writing the blog - to show others how mentally and physically draining waiting for and recovering from transplant can be.

So much has happened since I began my blogging journey. Last week I was very much reminded of this... As I crept out of the house with Caius in the early hours of the morning, I took a quick glance at Facebook. At the top of the page was a 'on this day last year' picture. It was of me waiting for the ambulance to arrive to take me to London for my first potential transplant. I had my silver and black holdall packed and ready to go. This year, the same bag was packed and ready to go but this time, it was heading to London and beyond as Caius and I left for a getaway to Kefalonia, something that had been completely out of the question the year before.

Since recovery, there has been so much that I have wanted to write about but haven't. I was too exhausted, in too much pain and then, as recovery progressed, I was too busy.

I am now back at work 3 days a week and am also volunteering with both a toy library and the children's hospital playroom. I'm hoping to improve my fitness and get back into sailing and am also planning my wedding. Then there's Coco pup to be walked and time to spend with my Caius and the rest of my family and friends who have supported me through the difficult times when being sociable was too much hard work to even think about. Lately, I have been feeling guilty for neglecting blogging. I feel bad for not being there through the blog for those who might be about to go through the transplant process or for not writing so that those supporting transplant patients can read and have an inkling of what their partner, son, daughter or friend is going through. However, on October 29th 2015, I was given a second chance to live my life to the full. It is my responsibility to myself, to my donor and to the family of my donor to live that life to the absolute max. Right now, there is so much out there in the real world for me to experience, take part in and achieve that I have to get out there and do it.

I would like to thank everyone again for all of the love, kind words and incredible support that I have had since the very start of my journey back in 1999. To those who have found comfort or support in this blog, I hope that you can read back over past posts and continue to find help and comfort. If you wish to get in touch, I am now an advocate for Life Life, Give Life and you can find me here on their website!

And so it is that I say farewell and as always


Keep Smiling :)

Showing off that cracking scar!

Climbing mountains with my love

Celebrating my birthday in style!

And so the time has come...

It has been just over 8 months since T-Day and I have had a rather rocky journey to recovery. Many have said that I will not feel completely 'normal' until around about the 1 year mark. However, I have been up and about and pretty stable for a while now and so the time has come for me to really regain some sense of normality.

Tomorrow, I go back to work!!!

I am equally excited and terrified all at the same time. 

Excited because I will be able to be around people in a more social environment, in a place where I can interact with others and have conversations with a variety of people rather than the select few who have been around during my time off.

I'm also excited to know that, even though it is going to be a slow start, I will once more be contributing to the household. I will have some kind of purpose and will have a reason to get up and get myself ready in the morning.

I'm terrified for some very silly reasons. I have not been on a bus in probably 9 months. I've had times where I've found crowds and small spaces really overwhelming and a bus at rush hour is just that. And it's summer, so it'll be a hot, overcrowded, noisy place. And how much does the bus even cost now?!! Ahhh! (I really should have done a trial run...)

A second terrifying prospect is that there have been a number of changes at the office since I left and I actually have no idea where I fit into the business now. Thankfully, I know that I am much more capable of working. My energy levels are much improved and my brain functions a whole lot better now that I have a working liver that is getting rid of all of the toxins. I'm also pretty much pain free thanks to the pre-gabalin so no longer take sleep inducing, brain muddling high strength codeine every few hours!

At the end of the day, getting back to work is another challenge to take on and I will go with all of the gusto I now have :)

Keep Smiling :)

From this...

To this! Thank you again to the wonderful person who donated and their family who agreed for the donation to go ahead

A Nautical Adventure

Thursday 29th April 2016 marked my 6 month liver-versary. It has been a stormy 6 months and one that I feel can be summed up, probably not briefly, in a sail...

Before the transplant, I was sailing in a sheltered setting. Somewhere like Plymouth Sound. The waters can get choppy and the sailing can be rough but it's nothing like offshore sailing. For me, the transplant was a beacon of light that was on the horizon to head towards and I believed that it would lead me into a harbour, into calm waters where the difficulties would end. When I got the call in October, I truly felt that the transplant would signal the end of all of my medical issues. However, when I reached this beacon, I sailed past it and realised that it was a light marking a breakwater and that I was heading into unknown waters. Near the breakwater, the waters were choppy and because I was't expecting it, I lost control. The waters settled and yet because it was all so unexpected, being in this wide open space with no idea what to expect, I felt helpless. Then, in December, the sun came out. The sea was kind and conditions were good. I was sailing and it felt awesome. I truly felt as though I was recovering well and would be back to my old self in no time. The sea could throw anything at me and I would soon be able to get through the storm. January was similar. There were some moments when the waves were rolling and uncomfortable and a few choppy, nasty moments but they passed. February was much crueler. I felt as though I had sailed into the middle of a gale force storm. Nothing was going how I had expected and I let go of the ropes, I was completely out of control physically and emotionally. The whole experience that I had been through hit me all at once and it felt like everything was falling apart around me. I was alone and too far from land to reach help. Everything hurt and nothing could be fixed. Occasionally, the seas would calm for a moment but never enough for me to recover and get myself centred in order to regain control. A few weeks ago, feeling lost and hopeless, I reached a headland and, sailing around the headland, I became sheltered from the storm. I was able to breathe and relax and take back control. Since then, there have been some slight choppy moments but I the rest has given me the strength to take on these moments with a more careful and considered approach. I am brighter and beginning to feel as though I can take to the seas again and that now, I will be better equipped to take on the challenges that the sea presents. Each challenge I will learn or re-learn skills and so develop and grow stronger. I know now that there is a vast ocean out there that will be filled with storms of varying strengths but it will also have moments of completely blissful smooth sailing...

Keep Smiling :)

The Morning After the Night Before... (WARNING: SOME ICKY CONTENT)

Back to the Royal Free, November 2015...

The day after my first night of methyl-prednisolone was not the best I've ever had! Thankfully, there were signs of improvement given my condition the day before. I was apparently less yellow and was starting to feel a bit more energetic again. I even managed to get out of bed and move around again. 

At some point over the previous days, my catheter had been removed. Since then, myself and the nurses had noticed blood in my urine. No one was overly concerned about this until I noticed a very large bruise in my groin. When I say a bruise, I mean a lump close to the size of a tennis ball the whole area was purple. It was not a pretty sight and was rather uncomfortable. I informed the doctors and yet another ultrasound was requested to make sure that this was nothing sinister. Thankfully, the ultrasound showed nothing nasty going on and it was concluded that it was just a really nasty bruise probably caused by the catheter or removal of the catheter. This delightful bruise to a good couple of months to subside - oh the joys of not having a normal platelet count!

Luckily, my day was improved greatly by the visitors that came... 

With Abi on the day of yellow!

Abi was there for the second day. It was so good to see her and also to see her when I looked a little bit more normal (although having spoken to her since, she felt I looked even more yellow!). At least I as able to sit up and get out of bed this time. I was so grateful to Abi for being there and it reminded me what true friendship is. She had come down from York during the middle of her studies as a midwife to come and visit to make sure that I was OK. It meant the absolute world to me that someone would go to that much effort to come and see me when I was most certainly not at my best, especially as visiting was limited to after 2pm, meaning that she had to find ways to entertain herself before coming into the hospital. It turns out that Caius had some very important business to attend to that he needed Abi's help with...

One thing about being in hospital is that it is difficult to be completely presentable and so you need the people around you to be those that you are completely comfortable with. Luckily Abi is certainly one of those people and she didn't mind that I might dose off halfway through a conversation or that at times I was close to falling out of my very attractive hospital gown. She didn't even mind me talking about toilet humour! Laughter is of course the best medicine and this comes from having the best people around you during recovery. 

Phew! A much more normal colour!

A Methylprednisolone Adventure...

Right, let's get back to business!

It's one week post transplant and I have just been informed that it is likely that I have rejection and will be spending the next 3 days on very high dose 'mega roids'... I have been warned by the consultant that I am in for a rocky night. 

It started horribly. I felt a catch in my throat and started coughing uncontrollably. I have never felt so panicked and in so much pain. I genuinely felt as though my wound was going to open up and my insides would come spilling out. There was no need for the call bell. It was immediately obvious to the nurses on duty that I was in distress and they were at my side swiftly. The lovely Irena stayed and held my hand to comfort me whilst another nurse rushed to get some oramorph. Once the coughing and pain had settled, I apologised profusely to the other patients on the ward for making such a fuss and waking everyone.

As warned, getting to sleep was proving difficult and the combination of all the meds was starting to mess with my head... And so the craziness begins...

Some part of my brain decided that the best thing to do to try to sleep would be to sing some lullabies. As a child, my mum would often sit on the landing outside mine and my brothers bedrooms and sing us to sleep. In my drug addled state, I believed that if I was struggling to sleep, everyone else must also be having difficulty so I should follow my Mumma's lead and sing. I went through the folk songs mum used to sing and found that I could only properly remember one, a beautiful lullaby called 'John of Dreams'. Once I'd stopped being able to remember that one, I moved onto musicals and worked my way through 'Hushabye Mountain', 'Stay Awake' from Mary Poppins and 'feed the Birds'. I'm not sure how that last one counts as a lullaby but I'll blame the drugs! Something switched and I realised that actually, I might be keeping the other patients awake and I wasn't  succeeding in singing myself to sleep. Thankfully, I managed to doze off briefly. 

At around 4am, I was woken for blood tests. This is when the fun really started...

Once more, I was struggling to get to sleep. I popped my iPod on with 'Pure Chillout' and closed my eyes in the hope that the music would help me to drift off. I started tapping my feet in time to the music. Then I waved them from side to side. I found that as I waved my feet, my bed began to move. I then found that I was able to steer my bed using my feet and so off I went on a little adventure.

I drove myself to the hospital lift and then down to the exit. I headed towards Belsize Park tube station, down the hill, past the lovely little boulangerie which smelled delicious as it was morning and just opening... Mmmm croissants! Into the tube station I went (still in the bed), through the barriers and down in the lift to the platform. I happily steered the bed onto the train with no stranger looks and people behaving as though this was an everyday occurrence. I knew exactly where I was heading and got off at Holloway Road. Left out of the station and across the road, I was in my favourite shop, Vivien  of Holloway. Caius had arranged a private appointment. It was just me in the shop, lying in my hospital bed surrounded by wonderfully helpful (as always) Vivien of Holloway staff. They had been instructed that I could have any outfit of my choice but that I wouldn't be able to try anything on because of my condition. The lovely ladies spent ages picking up dresses and flourishing them in front of me so I could choose. I was in heaven! It then transpired that I was there to choose myself an engagement outfit! I don't remember making a choice but I left the shop with a goofy grin on my face and steered myself back to the hospital...

I woke feeling euphoric until I realised that I wasn't engaged and didn't have a new Vivien outfit, nor was I likely to be wearing any of my Vivien clothes for some time... I drifted off again and experienced a very odd hallucination...

I was at a friends house in Modbury where my cousin Richard and his fiancé, Alice, were showing off their new gold glug jug. They were saying how much better it was than Gill and Rob's one because it was gold. They were very proud of their gold glug jug. I then found myself discussing glug jugs with mum and saying how much I'd always wanted one. She told me that she had my Grandad's glug jug and that I could have it. At this point, she presented me with a ceramic tray...

The conclusion from these strange, slightly out of body experiences, is that I think I'm just a little bit odd!

Keep Smiling :)

Gotta catch 'em all!!

I had intended to give a chronological account of my experiences but having got a bit behind, so much has happened in between that needs to be said! Don't worry, I will go back to the time in the Royal Free.

Today I had a bit of a tricky day. 

It didn't get tricky until mid-afternoon. I left for my rheumatology appointment shortly after 2pm giving myself plenty of time to get there. Traffic was a nightmare and so I was star gin to worry about being late. I made it to the rheumatology department in the nick of time but started to feel the tell-tale signs of dropping blood sugars - hot and shaky. Thankfully I had my emergency Haribo in my bag. Once checked in, I sat and waited. I was called to be weighed and fell apart. I was in quite a lot of pain in my left hip which has been playing up for some time leaving me able to walk about for around half an hour before causing trouble which then doesn't settle for the rest of the day. I hobbled down to the scales and cried. The nurse was so lovely. She sat me down in a quiet corner and I explained that I was feeling shaky and as though my sugars were low. She had them checked and confirmed that whilst I was above hypo measurements, it was low and it would be a good idea for me to get something in me. She sorted out with water, a cup of tea and a couple of biscuits- just what I needed after the quick fix of the Haribo. 

I sat in the quiet until the consultant called me in at 4pm, an hour after my appointment time. The consultant went over changes in meds since my last appointment and did an examination of my joints. The ones that came out as most painful were hips, knees, ankles and wrists. There was also pain in around half of my toes... Sitting back down, he broke the news that I had some sort of inflammatory arthritis. This was both a shock and a relief. A relief that actually I haven't been imagining these joint pains and that they can be attributed to something. A shock as I really hadn't expected anything to have shown up. The diagnosis came from the examination as well as blood results from my last visit. 

The next step is to start treatment for inflammatory arthritis and to determine which form of arthritis it is. The relevant tests have all been requested so I get to look forward to more blood tests, more x-rays and more ultrasounds!

I would like to reiterate how wonderful the nurses were. I felt pretty silly allowing my blood sugars to drop to the point where I got myself quite so worked up but they looked after me so well and kept a very good watch on me to make sure I really was improved enough to get myself back home.

So, it would appear that my immune system needs to chill out and stop playing Pokemon and trying to collect all these auto-immune conditions! Fingers crossed the treatment plan is given the go ahead by the liver team and that they can work alongside one another.

Keep Smiling :) 

And it was all Yellow...

Wednesday 4th November. I woke up feeling rough. Not rough like sniffly, stuffy nose rough; rough like I couldn't move.

The lovely physios came round to see me quite early and I said that I really didn't feel like getting out of bed and that I had probably overdone it the day before by spending most of the day sitting out of bed and walking around. From my experience of these physios, they usually do quite a bit of encouragement to try and get patients out of bed, particularly if they've already shown signs of being quite mobile. On this occasion though, they were quick to agree and said they would drop by later in the day to see how I was getting on. I was completely and utterly zonked. The doctors came round as usual and took bloods. I managed to sit up a bit and watch something on my iPad but I think i kept drifting off. 

At some point during the morning, the doctors started taking about a biopsy and trying to fit me in that day. To my knowledge, it wasn't unusual for a biopsy to be requested. I started to hear mutterings of slight concern. My bloods results were doing well on the whole but my bilirubin had taken a large spike which was a bit unusual as usually all of the liver function tests go awry if there's a problem. 

At one point the student nurse came round to see me. She was a great laugh- she seemed a little bit scatty and was always very talkative. She came round and dropped a bit of a bombshell. There had been a lot of fussing up to this point but I though this was completely normal until she told me that everyone was really worried about me. She then told me that I was looking very yellow... I hadn't been up to moving around so hadn't even seen myself in the mirror up to this point. Then I panicked. I took a picture of my eye to see how yellow I was and it wasn't a great result.

I've seen worse but a week after transplant, I was certainly hoping for much better than that!

I can't quite remember what order the rest of the day happened in. I know I reluctantly had some lunch. After lunch, I had visitors. The wonderful Sarah who I haven't seen for years but went to university with came to say hi. We had a really lovely catch up but the poor girl spent most of the time crying. I think this happened before I'd taken the photo of my eye as I didn't realise myself how bad I looked. Caius was being careful not to overload me with people and had a coffee with Abi whilst Sarah was with me. Once Sarah had gone to work, Abi and Caius came up and I decided to show off by walking myself to the toilet and back. As I came back, one of my drain bags must have overfilled and it leaked all down my leg, soaking my gown and leaving a very embarrassing puddle on the floor. I felt completely humiliated and burst into tears. I was exhausted from just a short walk and was now covered in nasty drain fluid and standing in the middle of the ward. Thankfully, the lovely nurses were on hand to clean me up and get me back into bed and Caius and Abi were good enough to have a little wander whilst I was being cleaned up.

They got back and I enjoyed more catching up. Abi had travelled from York to London to come and visit and had arranged to stay for a night at her parents so she could check up on me again.

I also had a visit from the delightful little Katie who will always and forever be, little Katie. She's like a little sister to me and I have watched her grow from the girl who stood on tables in cafes to sing to everyone, to a beautiful, confident young woman who is finding her place in the big city. 

I seem to remember that it was also on this day that I took my first look at my wound. The surgical team had been checking on it daily but I hadn't yet had the courage to take a look. Surrounded by friends, I decided it was time! It was a shock but i was also fascinated by it. I had been stapled up so there was something very Frankenstein-y about it. Looking at it, I couldn't quite believe that it was the same body from a week before.

The bruising across my lower abdomen had been there for some time and was caused by my insulin injections. The round thing on either side were my drain bags. When major surgery takes place, a lot of fluid is put into the body and needs to come out somehow... in this picture, I have recently had fresh, clean bags attached.

I think it was after dinner that I was taken off for my biopsy. Having heard mutterings all day about it with some debate as to whether it would take place on this day or the next morning, everything then seemed to happen very quickly. I was taken off and prepped for the op and started to panic. I'm not good with needles or surgery and get quite anxious about procedures. I usually request sedation and did so at this point. They told me that because I had dated recently, I wouldn't be able to have sedation as it would be dangerous. I sobbed and begged and sobbed some more. One of the team came down to see me and told me how important it was for me to have the biopsy done as soon as possible. It was at this point that I realised the seriousness of the situation. The team were concerned that I was rejecting and would need to treat this as soon as they possibly could which meant finding out what was wrong as soon as possible. They had been working hard all day to find a slot for me and this was it, they really couldn't wait another day!

The biopsy didn't take long and I will try to write a detailed separate post about it.

Once back, I had my family around me and I could see there was concern. I was very jaundiced and definitely not as perky as I had been the day before. However, I still managed to smile and have some silly time...

Getting into the Christmas Spirit with the reindeer antlers from Mumma!

This probably shows the extent of the yellowing a little better... yes, I really was that shiny, kind of like a lemon really!

The docs came back later that day and although they didn't yet have the biopsy results, they were keen to treat me for rejection. This meant 3 high doses of IV steroid over 3 days with the first dose to be given that night. I was warned that I was in for a rough night. The steroids would most likely keep me awake, make me hyper-active and probably hungry. They weren't wrong...

Keep Smiling :) 

Wakey Wakey...

First of all, an apology. This hasn't turned out to be quite what I'd hoped it would be. I had hoped for a detailed recollection of all that I went through with the transplant and recovery but have left it far too long for that. Instead, what you will get is a lightly fuzzy, sometimes second hand account of my time at the Royal Free.

Secondly, I would like to emphasise that this is an account of what happened to me. The transplant experience and recovery process is different for everyone so whilst I hope this can provide some information about what to expect from recovery, each and every person will respond differently. 

I was woken up from surgery at around 7pm on Thursday 29th October and was taken to Intensive Care where my parents were finally allowed to see me. I cannot imagine the sense of relief they must have felt to see me having not quite made it to the hospital before I went into surgery. Personally, I don't remember any of this evening so what you read is taken from notes made by Mum.

Apparently, though massively doped up, I was awake, telling jokes and singing... One of my favourites was spurred on by Caius' frequent sighs of 'ay, ay ay'. This led to the following little ditty:

Ay, ay, ay, ay
Si, si senora,
My sister Belinda,
She pissed out the window
And filled up my brand new sombrero

This was of course recited at the top of my voice. Thankfully at the time, my vocal volume wasn't what it usually is!

I also liked to remind people that I was a little glow-worm... (a glow worm's never glum, 'cos how can you be grumpy when the sun shines out your bum).

It appears that I also wanted to remind my mum how much I loved her and kept saying 'I love you mummy'. 

As I have said, I don't remember any of this. When I came out of surgery, I was pumped full of a variety of painkillers which were being administered through lines in my neck. I was hooked up to machines which constantly monitored my stats such as heart rate, oxygen level and loads of others. I also had an oxygen tube up my nose, lines in each of my arms and a catheter in. I'm pretty sure I went to sleep fairly early despite having been asleep all day!

The following photos may be difficult for some people to view as they show the lines and monitors that I was hooked up to. I do feel however, that it is important to show everything that the transplant procedure entails.

Unknown Number

When 'unknown number' flashes up on the phone there are often a few different reactions that could run through a person's mind.

Should I answer?
Is it a cold call?
It might be important!
It could be my parents...

for me, especially since a false alarm call in September, 'Unknown Number' sent my heart to my throat pounding at a million beats a second. 

It could be another call. 

I'd had a few 'Unknown Number' calls since the first false alarm and most had provoked this reaction. Mostly, they were calls from the hospital arranging appointments or calls from my parents who have a withheld phone number!

At 00:02 on 29th October 2015, my phone buzzed under my pillow. 

Unknown Number.

There was no doubt about this one. 

I answered as calmly as I could, trying to sound as normal as possible. Obviously receiving a potentially life-changing call in the middle of the night requires utmost normality. I listened to the familiar, calming voice at the other end telling me that there could be a match and I needed too get myself ready. I would get another call shortly to let me know how long the ambulance would be. 

I phoned Mum and Dad. Dad answered. 

'Take two', I said.

'Take two what?' was the response... I made it a bit clearer. Dad had just come in from the pub from his guitar club night. Given that the false alarm call had seemed pretty relaxed and had taken over 8 hours from phone call to being sent home, Mum and Dad chose to get some sleep before making their way up.

The transplant co-ordinator called back to say that the ambulance would be with us in an hour and a half. I had a bath, took my time, tided the house and made an attempt to relax. 

Fast forward a few hours and Caius and I are at the Royal Free. Mum and Dad are on the way. 

Keeping warm in Caius' Gilet

I spend most of the time telling myself and Caius that it's not going to happen but somehow things are different this time. We go through the same process of getting into the hospital gown, ECG, chest X-ray, blood tests (17 vials!), cannula. It took us a little longer to get to the hospital this time so the fact that things are moving a bit quicker doesn't seem to indicate much. They tell me I'll be going down at around 7am. Mum and Dad aren't that close but given that it's almost 7, it doesn't feel like I'll be in surgery soon. I'm given some temazepam (a tranquilliser) to calm the nerves. It sends me funny and then to sleep. It's gone 7 and people are talking about 8am being staff changeover time so I'll be heading down near then. Mum and Dad are close. They're nearly here. It's almost 8am and the bed is being wheeled somewhere. Caius is with me holding my hand. I think I was a bit teary by this point. I told Caius to tell Mum not to feel guilty for not making it. I loved them all and would see them soon.

Temazepam induced strangeness!

There were nurses beside me now, holding my hand and comforting me. Caius was there and the doors to theatre were opened. The bed was wheeled in and I had tears falling silently down my cheeks. I was terrified by this point. It was really happening. 10 to 14 hours of surgery lay ahead and who knew what would happen during or after that surgery.

I was slid onto a different bed for surgery. I was hooked up to a few monitors and the anaesthetic was given. Someone held and stroked my hand and comforted me the whole time, reassuring me that everything would be ok. I was asleep.

My pre-surgery tummy...

Mumma's 'call day' account...

In keeping with the last post, here is a piece by my Mum telling of the experience she and my Dad had on the day of call number 2!

They live near to Plymouth so had quite a trek to get to the hospital and didn't have the advantage of flashing lights and sirens.

The phone call came in just as Rob and I were going to bed. I had been holding a Christmas play meeting in the house and Rob had been to guitar club. As soon as the Phone went and I knew it was Jenni,  I knew immediately what it was. We both knew that we were in no fit state to drive as it was past midnight so we decided to go to bed for an hour or so, we woke bleary eyed and packed a bag each, to tide us over for a couple of days, I don't think either of us thought that it would go ahead after the last aborted mission to London just a few weeks earlier.  We knew that Jenni had arrived at the hospital but had been reassured that nothing would happen for a few hours so we stopped for a coffee on the way to wake us  up and have a leg stretch. We reached Hampstead at I  think,  about 7.30 we had contacted our son Paul in America who had spoken to Jenni to send his love and best wishes and Caius Jenni’s boyfriend has been keeping us up-to-date with what was happening.  We had just arrived in Hampstead, literally less than a mile to the hospital but it was rush-hour and the traffic was at a standstill. Caius had told us that Jenni would be going down to theatre and that she was being prepared, at this point I started to panic because I was frightened that I wasn't going to get there before she went down. I spoke to her on the phone and told her I loved her and we will be there as soon as we could. Rob  dropped me outside the hospital and I ran to the ward but she had gone. I then had to find the theatre. I rushed to the desk and then saw Caius, so I knew I had missed her and that she had already gone down. The tears started and wouldn't stop. It was sheer grief and sorrow at not being able to hold my daughter’s hand. I wanted to tell her how much I loved her and how fantastic this opportunity was going to be for her future. I wanted to tell her not to be frightened and to be reassured that she would see all of our smiling faces  when she came to later that day. I wanted to hold her hand and touch her face for that moment in time when despite all the confidence I had in the team looking after her I was still afraid that I might lose her. I was so glad that Caius had been with her so she wasn’t alone. The nurse came out of the anaesthetic room and told me that Jenni wasn't asleep yet, so I was able to get a message to her and took some comfort in knowing that she knew we were there ready to welcome her back to us. 

We waited for 10 hours, pacing, drinking coffee, nodding off, trying to read . We had regular bulletins telling us that the old liver was out… New liver was in…. She was doing brilliantly … She was in recovery … She was in intensive care where we could go and see her. 

And there she was, a radiant smile on her face, looking tiny in amongst all the drips, lines, drains and monitors, but that smile, I will never forget. She said ‘I love you mummy, so much and I was so worried that you would be upset that you didn't see me, but I know you love me and Caius was with and I'd spoken to  Paul, I was Ok” 

We couldn't believe how awake and lucid she was .

It was clear though that she was under the influence of drugs, namely fentanyl, because she was singing songs and reciting poems the most  memorable being “I wish I was a glow worm, a glow worm’s never glum, 'cos how can you be grumpy when the sun shines out your bum”!

Another point of view

So, I've been a little quiet on the blogging front lately...

Good news! I've been recovering from my transplant which took place on Thursday 29th October. 

I have also been looking to give some alternative perspectives to the whole experience and so have asked a few of my nearest and dearest to write about 'The Call'.

This is the first instalment of those perspectives and comes from my wonderful other half, Caius. 

Me, My Man and our Pup :)

7:59am….

The doors closed behind Jenni and I wouldn’t be able to see her until after the operation. I don’t know where I am, or where to go, or what to do, or who to call. The emotion takes over.

A nurse on her way on to her 8am shift touches my arm and asks if I okay and if there is anything I need. I don’t know what to say. I can’t move.

Rewind 10 hours and Jenni and I are clambering into bed after a regular evening of rest and relaxation for Jenni (recovering from her second bout of Cholecystitis) and dish washing for me post-cooking. We fall asleep curl into one another, Coco at the end of the bed. Silence, peace, content.

Midnight…..

We both wake up to the hum of Jenni’s phone whirring on silent. Jenni answers, I recognize the calm voice on the other end.

Out of bed, hospital bags out of the closet, clothes on the right way round. At least they gave us the benefit of two hours sleep.

The liver is a match, the ambulance is on its way. T-minus 90mins. We’ve done this, we had everything fine-tuned. Jenni opts for a bath whilst I start hunting for the last essentials: iPad, chargers, iPod….. got to load up those audiobooks.

1.30am

The ambulance turns up, we jump in help the cockney driver to drive through Bristol city centre to the motorway, then we both conk out. The next thing we know, we are entering London, driving through empty streets and pulling up at the Royal Free.

3am

We don’t know where we are going, making a bee-line for the ward we went to last time. Redirected to the right ward, checked in.

Everything is different. There is immediacy in everything the people are doing. Tests (17 vials of blood!), scans, questionnaires, plans of action. Is this happening?

5am

It’s going ahead, its happening. I feel excited for Jenni, scared about if things go wrong, anxious about what to expect after the op, alone and responsible with the lack of her parents in the mix (racing past Reading by this time)

Jenni and I take the time to cuddle up on the bed, to take just a moment before this reality becomes real.

They send in some tranquilisers for Jenni to calm her down. This causes her to get the giggles and acted completely loopy and stoned. Hilarious.

6am

They want to take her down soon but are waiting for the 8am shift to start to make the process smoother. 

7:45am

We are off. Jenni is welling up. Fear, excitement, trepidation, missing her parents (who are battling the morning traffic but are so close)

7:55am 

In the lift, on our way to surgery. My hands are shaking, but I keep up the brave face.

7:59am

The take her away from me

Will I see her again?

Silence

8.07am

Jenni’s parents exit the lift. They’ve missed her by 8 minutes! I feel their pain. They couldn’t see their little girl before she left. The nurse that took us down appears from the door and offers to pass on a message. At least Jenni will know we are here.

8:25am

So what do we do now? We have up to 12 hours to wait around. Relocating to the local café we start arranging things. I have a list of appointments to rebook for Jenni, people to notify, friends and family to keep apprised. Jenni wanted me to get in touch with people when and only when she was under the knife.

Rob, Sarah and I all need to arrange accommodation for the next week or so. 

Now at this point I am on fire! The adrenaline is surging and I am Mr Reactive! Ticking off the tasks, making the calls, making sure everyone knows what is going on. When I run out of things to do, I’ve got hours to kill before Jenni is (potentially) out. With Rob and Sarah going out to look at some shops and accommodation, I decide going to work (in the London office) is a good idea.

I actually get a couple of hours of work done, no-one knows what I’m doing there. I don’t mention Jenni. I don’t know why. I guess I wouldn’t know what to say but really I think it’s because if people start getting concerned around me and hugging me I might lose it. I can’t, not yet.

I go to a meeting in the city (rearranged) then head back to the hospital. By now it’s approaching 7pm and we are told we can go in very soon.

Jenni came around and we were allowed in to ICU at 7.30pm. I won’t lie, it was like being on board a spaceship; all futuristic and cool. We scrub up to see our girl.

Cables, tubes, beeps, blips and the hissing of oxygen. People could be terrified by the sight of all that… technology. But all I can focus on is Jenni. She is awake, she is calm, she is beautiful.

She is the most beautiful thing I have ever seen

On the Road to Recovery

Today I finally feel as though I am making some real progress towards feeling myself again. Not quite the pre January 2014 self that was able to manage a full week of work in retail as well as 2-3 rehearsals a week and an aerial silks class but the self that I need to accept that I am until the magic phone call comes.

Whilst I still feel like I am walking around with not only a full-term baby sized spleen as well as a baby sized rock in my abdomen, this is a definite improvement on the 2 baby sized rocks from last week. I probably wouldn't be offended at this point if someone were to suggest I might be pregnant as I am fully aware that I look as though I could be. This probably isn't helped much by the fact that I tend to hold my swollen tummy to stop it from wobbling around uncomfortably!

Back to today and it's successes. 

I managed to drive myself (first time since coming out of hospital last Thursday) to Uni for a couple of meetings with my mentoring tutor and the DSA to discuss ways to make the course work for me. When I applied for the course, my health was looking relatively good and I hadn't had any admissions for over 6 months so I was confident that I would be able to manage. Recent events however, indicate that I might need to slow down a little bit and the University are really supportive with making sure this happens as best as possible. After a discussion with my mentor, we have concluded that whilst I would like to be able to attend the full day of lectures every week, there may not be much point as by the end of the day, little to nothing is being absorbed and I'm pretty done in both mentally and physically. Having taken advantage of the note-takers a couple of times now, it is clear that they are a great help and that I can, and should, take advantage of them. This frees me up to do a bit more study at my own pace and to be able to break lectures up into more manageable chunks. It does also mean that I am likely to find myself a bit behind at all times as it is taking me that bit longer to get through the necessary material. At the moment, I am OK with that. As so many people keep reminding me, my health must come first and I am not intending to be slack on the course and want to achieve a good result at the end of the day and there are ways of getting there without ending up in hospital again! The DSA appointment was helpful and they have suggested and put forward some really interesting software that will help with study at home and at Uni. This has all helped to make me feel a bit more relaxed about the course.

After a good rest at home, and managing to listen to one of my old lectures that has been recorded, I also managed to cook dinner and get out for a twenty minute twilight walk with the puppy dog. Luckily she is good at entertaining herself and spent most of the 20 minutes running in circles around me and tiring herself out. I loved being able to do this and even though my knees are a little sore now, I feel like it is a great improvement on the last few days. Fingers crossed that I haven't spoken too soon and that I don't suffer the consequences tomorrow. I have been sensible and broken the day up with an afternoon break and am now pretty much done for the day so all should be good!

A slightly demonic looking Coco Pup at the end of our evening walk!

Keep Smiling :)