The 'F' Word

On Monday 2nd November, I woke up in a bit less pain and the nurse encouraged me to sit out in a chair. This took a lot of help from nurses to get me sitting up, swinging my legs around and flopping into the chair. It was thought that this would help to get the bowels moving as I had been very static for 5 days. It didn't help hugely but it did give the nurses the chance to give me a better wash and to change my bed properly without having to roll me around. 

A bed had been found for me on the recovery ward and so I was due to move later in the day. Having not had any sign of bowel movement, I took the plunge and agreed to an enema. This is not a pleasant experience and all dignity goes out of the window! After having the enema, I felt 'movement' quite soon after. The nurses bought out 'the chair' (a commode)... unfortunately, not much happened - I just lost the enema juices. This is just delightful isn't it!! Only telling it like it was! 

Shortly after, I was moved to the ward. This is where we get to mum's favourite bit...

I was lying in bed having just got to the ward when the magic happened. I farted. We were all absolutely delighted and no one more than myself! I let everyone know and didn't hold back. Then it carried on. And on. And on. It went on to the point where I was no longer laughing but was starting to panic that it might be more than just a fart (it's very difficult to tell when you're on an air mattress)... I had to try and calm mother down so that she could get the nurse to come and check. Again, dignity was half way across England by this point!

The first nurse that I met on the ward was the lovely Sophie. She was about my age and very softly spoken and gentle. She was also very efficient. One of the first things I had asked when I got to the ward was if I could have my hair washed. After the trauma of the fart incident, Sophie made sure that my hair got washed which made me feel a hundred times better. As someone who tends to wash their hair almost every day, waiting 5 days to have it done was torture and it felt heavy and disgusting. Not only that, but the bright blonde was well overdue for a touch up but that wasn't quite something the hospital staff could stretch to!

During the day, I managed some small bites of food but I had a problem that not many people seemed to understand. My senses felt completely overwhelmed, particularly my sense of smell. This meant that I was really sensitive to smells and flavours. Any perfume that was being worn was too much, hand creams were really strong and food was just a step too far. All I wanted was plain rice and no-one could quite comprehend this! The first food I asked for was late in the afternoon and I requested weetabix with hot milk and a bit of sugar. Even that was too strong smelling and also too hot so by the time it was cool enough, it was just a stodgy mess that had gone slightly sticky... not the greatest success. Caius bought in some of the microwaveable rice packets for me and that was exactly what I wanted. The nurses and catering staff were completely befuddled by this and kept trying to offer me gravy or sauce to put on the rice. Nope, plain rice was all I wanted. 

Later that day, I was visited by the physio team who showed me a technique for getting out of bed and with an arm on either side for support and someone pulling my drip stand around, I managed to walk the 10 yards to the toilet. This was a major achievement and I was thrilled to have done it. 

Having been in bed for 5 days wearing the very attractive hospital attire, I had requested a few nighties so that I could feel more myself. The position of the scar meant that pyjamas were not really an option as I was so tender.

This felt like a day of progress and I finally started to feel as though recovery was going in the right direction.

Keep Smiling :)

Intensive Care

Intensive care is one of the most incredible places to be. Obviously it's not somewhere you would electively request to go, but as far as being in hospital goes, they are amazing units. 

I spent 5 days in intensive care (partly because there was no space for me on the recovery ward) and whilst those days are rather fuzzy for me, I do remember how high tech everything was. I was hooked up to lines that fed me, gave me fluids and made sure that my glucose and insulin were balanced. I also had my pain relief. This was a drug called fentanyl. This was administered as a continuous dose with an additional PCA - patient controlled analgesia. I was given a button to press each time I felt that I needed some pain relief. 

At the heart of all this incredible high tech equipment were the staff. It takes a special kind of nurse to work in intensive care. I must have been a relatively straight forward patient to look after. My surgery although major, was essentially elective and takes place on a fairly regular basis. I had no complications with my surgery and I was generally lucid during my recovery. However, I could barely move and could do very little for myself. The nurses who looked after me were the most caring and patient people I have come across. I remember not being able to properly ask for things and often gestured for things like water and for my lips to be looked after as they were unbelievably dry. The nurses also had to wash me and keep me moving. Above all of that, they had to put up with my inane ramblings and keep me company. Every single one of the nurses on the intensive care ward gave an absolute 5 star service and I have never felt so well looked after. 

My first full day in intensive care was, according to mum's notes, a bit of a painful one. The PCA was a godsend. I also had a visit from a very good friend who came in with the most adorable card...

As a crazy dog person, this is just the card I needed!

We had a good long chat and I think I thoroughly enjoyed our catch up but I honestly cannot remember anything I said. All I remember is that we sat together and had a really good chat. I think I also recorded a message for Abi on this day but my memory is very fuzzy!

Day 3 (October 31st) was apparently more of a painful day. In some respects, I'm thankful that I can no longer remember the pain that I was in but in others, I wish I could so that I could try and convey the full experience. I remember that there was an awful lot of pain but I can no longer recall where it was or liken it to anything which is really frustrating. 

I did have a visit from my lovely cousin Hannah on this day. We had a good long talk about her time in Hong Kong and how her course in tropical diseases was going. Mum, Dad and Caius were also with me nearly all of the time and by this time I was beginning to pick up on some kind of routine that visitors had to do. Before coming in, they had to wash their hands and put on a plastic apron to prevent infections being spread. 

I started to drink small amounts on Saturday but still wasn't eating and had no desire to. This is unheard of for me. Bear in mind that my last meal had been on Wednesday night and it was now Saturday! Food has always been important for me - mainly because before the transplant, it had so much of an effect on me. Eating the wrong things had often put me in hospital and with diabetes I had to try to keep control of my diet. I also like to keep as healthy as possible through eating the right things. As well as that, the dose of steroids I had been on had an impact on how much I wanted to eat!

This, I believe, was also 'cheese and prunes' day. As a bit of a Michael McIntyre fan, I always crack up at his 'cheese/ prune' sketch and if you haven't seen it, I suggest you take a look - it's from the 2012 'Showtime' show. To give you an idea, here are my 'Cheese' and 'Prune' faces:

CHEESE!

PRUUUNES

Day 4 (November 1st) was another painful day. I think this was the day when I was moved into a semi private room in intensive care. The pain was causing me to cry out quite a lot and this was possibly disturbing to other patients. I think it was on this day that I was surrounded by doctors, probably about 5 or 6 in the room talking about how they were going to proceed with my care. I remember being in agony; whimpering and calling out, not making any sense. Most of the doctors were talking and seemingly oblivious to the fact that I was in pain. At this point, I remember one of the younger members of the team stopping everything to say that before anything else could happen, they needed to get my pain under control. This was one of the first times that I felt as though the doctors were doing something that would help. Before this, they had generally been poking and prodding and to me, it seemed as though they were doing more harm than good! I have never thanked anyone as sincerely as I thanked that doctor. Finally, it seemed as though someone was on my side and that they were going to do something about the pain. 

I remember the nurse on this day. She was amazingly reassuring and when I didn't have visitors in, she was by my side holding my hand and reassuring me that every patient went through a really bad day before they started to improve. At the same time, she was also firm and ensured that I was working hard to get myself better. This included trying to cough which was absolute agony!

The other small problem I was facing was poo. Or lack of. I had had no bowel movement at all since before surgery. Apparently they don't like to send post-op patients to the recovery ward without some evidence of bowels waking up. After such major surgery with large quantities of anaesthetic and considerable nerve damage, doctors like to make sure the body is waking up again but it seemed that mine was being a bit slow! 

One of the other things I noticed around this time was my smell. I felt like I absolutely reeked and my breath and mouth felt disgusting. I was given another bed wash and had my gown changed which feels more lovely than I would have imagined. I was also given a mouthwash which was not so pleasant. The nurses used these sort of lollipop sponges to dampen my mouth when I wasn't drinking and also soaked them in corsodyl to clean my mouth. If you have ever used this stuff as a mouthwash, you will be fully aware how disgusting it is! I was reassured by those around me that I didn't stink but have to say, I still remember feeling horrible even after being cleaned up by the wonderful nurses. Again, they are not paid enough for what they have to do!

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...

Just Keep Swimming...

Wednesday 28th October was a pretty good day.

I was off sick recovering from the latest bout of cholecystitis and had decided to take the specialist nurse's advice and go for a gentle swim. I treated myself and went to Hengrove Leisure Park which boasts a lovely pool and also a spa with jacuzzi, steam room and sauna. 

I'd been expecting to pay quite a lot for the combination of a swim and spa but was pleasantly surprised :)

I got myself changed ready to hop into the pool and pulled the box that kept my goggles in from my bag. Now, I am a bit short-sighted. I say a bit. I'm very short-sighted. Once I have put my glasses down, I need someone else to find them. Everything goes super fuzzy and I start walking a bit funny and very slowly so as not to bump into anything. Because of this, I have prescription goggles so I don't end up causing a pile up in the pool. On this day, I pulled my goggle box out of the bag to find it  ... empty! Nooo! I rummaged through the bag and found Cauis' goggles. Nope, don't want those, throw them back in. Rummage again - Cauis' goggles. Calmed down and put the bag on the seat and looked through sensibly. There were definitely two pairs of goggles in the bag and an empty box. Both pairs of goggles belonged to Caius. I braved it and went round to the pool in my glasses with Caius' goggles. It's difficult to explain how weird it is to see things so unclearly. I made my way to the pool and sunk into the slow lane which was nice and wide and there weren't too many people in it. After the first length though, it was clear that the few who were in the lane had no idea how to use lanes for swimming. They were swimming sort of side by side and instead of going up one side and down the other, they were happily taking up the whole lane. This was not going to end well for me as I couldn't see anyone until they were pretty much right on top of me! Thankfully another lane had cleared and was empty but for one person. 

As a youngster, I loved swimming and was pretty good. I trained regularly and competed at regional level. During my initial diagnosis, I was forced to stop training as I was too exhausted. Despite this, whenever I get into a pool with lanes, I get the urge to swim fast. I want to push myself in the pool and each time I want to improve on what I did the time before - a few more lengths in a little less time. Today however, I really had to calm myself down. I was here to granny swim. I always give myself a goal when I go swimming; either a number of lengths or an amount of time. Today it was 30 lengths. On a good day, I could have got through this in probably under 25 mins. On this particular day, it took me 40! But, I had achieved something. I'd got some exercise and felt really good about it. I then thoroughly enjoyed myself by relaxing in the spa. 

This kind of day is something that I would thoroughly recommend to anyone who finds themselves in a similar situation. Swimming is a very therapeutic form of exercise. The warmth and support of the water is beautifully relaxing, especially if you do take the swimming slowly and gently. (The spa afterwards is definitely worthwhile too!)

I spent the rest of the day relaxing and taking it easy yet still found myself pretty knackered at the end of the day. I creaked into bed and once more whimpered my hopes that my phone would ring soon.

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