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

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 :) 

Home Sweet Home

Woohoo! I got discharged yesterday after over 5 days in the beautiful BRI.

Now it's time for the real recovery to start. The trouble with hospitals is that whilst their purpose is to make people better, the environment really isn't conducive to this. They say that sleep and rest is one of the best things for recovery and yet they are one of the most difficult places to get any sleep at all. During my first night, I was under 2 hourly observations. This meant that every 2 hours a nurse would come round to take my blood pressure, temperature and blood sugar levels. Being stabbed in the finger every 2 hours is bound to wake you up no matter how strong the painkillers! Thankfully this only lasted one night and gradually reduced to 4 hourly. This still meant that every morning at 2am and 6am I was woken up for a sugar test. 

A hospital ward is also never dark and never, ever quiet! I am fully aware that this is for the benefit of the patients as monitoring in the dark is not going to be possible and the noises tell the nurses exactly what's going on and where they need to be most urgently. The liver ward can be a particularly noisy place to be... There are a lot of patients who are suffering from withdrawal or hepatic encephalopathy, both of which can cause severe confusion and make people do some very strange things. Last time I was on the ward, someone smashed a window and climbed out using the fire escape. Nothing quite so extreme took place this time but there were some very noisy patients. The lovely little lady opposite me was profoundly deaf and struggled to communicate but at night she made the strangest noises! I described it to visitors as 'a dying llama'. It was a very strange exhaled bleating noise and whilst it was an entertaining noise, when it's been going on all night for 4 nights, it becomes quite exhausting. At the other end of the ward, there was a gentleman who spent most of the night (and day) shouting. I have no idea what he was shouting about but he definitely wasn't too pleased to be where he was. When you're struggling to sleep because of the noise and goings on, it can be easy to forget that these people are in hospital for a reason and they are not well. Luckily, the nurses are fantastic and even though they are pushed to their limits, they remain calm and caring towards every single patient. I'm sure they go home and have a bit of a moan about some of the things they have to put up with, but I suspect it would be far worse if they kept it all in! I also need to remember that, as a patient, I'm there for a short amount of time and experience far less than what the nurses do day in, day out. I cannot thank them enough for the level of care they provide in such difficult conditions.

Getting back home was such a relief. My puppy greeted me with all the enthusiasm she could muster which was completely overwhelming and almost led to a bit of hysteria as she wouldn't calm down and managed to smack me in the face. I got myself a culpa and snuggled up on the sofa with all the home comforts around me that I could need - tea, biccies, blankets, TV and my snuggly (now calm) puppy dog. Last night, I got a proper full night of sleep and was able to get out of bed when I wanted without having someone turn the fluorescent lights on to take a blood test. All I need to remember now is that I'm not yet ready to run around doing housework, take the dog for long walks or get back to doing 8 hour days at work and that a proper rest is what is needed to make sure that I am completely fit and ready when I do go back. 

Fingers crossed that there are no more of these hospital admissions between now and 'the call'!

Keep Smiling :) 

Warts and all

Yesterday was a bit of a day and I was reminded how wonderful the people around me are.

There had been one rather heavy weight on my shoulders for a few weeks that has finally been lifted.

This needs a bit of back information...

Back in January 2014, I came back from holiday and home to a letter that told me I had abnormal smear teast results. Further investigations were carried out and 'severe dyskaryosis' was diagnosed- basically, there were some abnormal cells in the cervix and these would need to be removed. In March 2015, I had a LETTS procedure to remove the cells which is usually a fairly standard procedure but of course, my body has to make these things a little bit more complicated. Instead of being a standard day case, I had to go as an inpatient and have platelet transfusions and so on to reduce the risk of bleeding. I then had to have a week of work completely resting which I managed quite well for me. 

Once the procedure had been carried out, a repeat smear was done and there were still some small signs of abnormal cells. Luckily this is fairly normal and no further surgery was required, just regular check ups and smears. This is easier said than done and despite being quite clearly written on my notes that I needed to be seen in 6 months, I had to really push to get this done to the point where I had to get the patient and liaison service involved. Everything cleared up and I stopped worrying.

A few days after my false alarm transplant call, I started to get some spotting. I have the Nexplanon implant fitted and whilst spotting can be linked to this, it is usually during the beginning or end of its 3 year duration that this happens and having had two before with no problems, this caused me to worry. When it had been going on for just over 3 weeks, I told the liver nurses and they agreed it should be followed up by the gynaecological team. It was only a day or so later that it s back in hospital and it was discovered that my platelet count had dropped further. This, combined with the infection could have been a cause of the bleeding and so it was suggested that I waited a bit longer to see if it stopped. It was still going a week after being released from hospital and we were once again in the process of contacting the gynae team when I was admitted again. 

Usually, I'm not one for googling symptoms but of course this time I had. That had got me massively panicked and given my 'abnormal cell' history and the fact that I'm immuno-suppressed, I was fearing the worst.

Yesterday, I was booked an appointment at St. Michael's hospital for and internal ultrasound (not pleasant) to establish if the spotting was being caused by anything sinister. After a rather traumatic, anxiety inducing transfer from one hospital to another (you'd think it would be straight forward with them being almost next door to one another), the scans and investigations were complete and I was assured that everything was normal. The relief was completely overwhelming. Finally something that no longer needs to be lingering at the back of my mind each day. 

The to-ing, fro-ing and running late had got me into a right old pickle though and by the time I got back I was completely drained. I arrived back at my bed at just after 4pm. My appointment had been scheduled for 1pm and I was due back at my bed at 2pm for my antibiotics. I hadn't had a proper lunch and so I was not in a good state. As I got back, the nurse told me that I had another scan booked for 4:30 and needed to have a full bladder. At which point the empty water jug was removed from my table but not replaced! By almost 5pm there was no sign of any porter to take me to this appointment and Mum and Dad, who had been with me throughout the ordeal of a day, had to make a move as they were supposed to be enjoying a short break. Just after they left, I asked what was going on and was told that the scan that had been booked was the same as the one I had just been for at St Michaels and had been cancelled. This is exactly what Dad had expected. Caius turned up shortly afterwards and the poor boy got me in a rather difficult mood. Once I'd had a hug and a good cry, I calmed down. He went and got me some decent food which I managed to get done me before the lovely Beth turned up.

There is something about Beth that is so vibrant and happy, there's no way to be miserable near her. We had a fantastic chat and I should think most people were wondering what I was doing in hospital at that point- I think everyone needs a Beth to visit them in these places! Caius came back and gave me some super lovely slipper socks with cute penguins on- they are adorable and just what I needed as my others are worn through! Beth stayed until the last minute and left me feeling so much better than I had been the rest of the day.

I really am so very grateful to have such fantastic people around me support me however they can- I love you all and appreciate every kind word and message from each and every one of my friends. Thank you a million times over!

Keep Smiling :-)

I really am so very grateful to have such fantastic people around me support me however they 

Gall Bladder strikes again!

If you haven't read any of the Awkward Yeti cartoons, I love them and they keep my strange sense of humour satisfied. The 'Sad Gall Bladder' ones are a particular favourite.

In the early hours of Saturday morning, I woke up absolutely parched and feeling achey. I got up, got a glass of water, downed it, refilled it and drank another half glass before heading back to bed with the remainder. Shortly after, the rest of glass 2 was gone but the aches had got to the point where I couldn't really move. My head felt like a lead weight and my neck was stiff. I was warm but with the covers off I felt shivery so snuggled right in and hoped for sleep. After a few hours, I thought it must be 'flu. Absolutely typical. My 'flu jab was booked for 9:49 on Saturday morning and with flu like symptoms, it's not a good idea to have the jab. I think it was probably about 6am when Caius noticed I wasn't quite right. He got me more water and checked my temperature which was running high. Half an hour later it had crept up further and the decision was made to go to A&E. This time, I dosed up on my steroids and took an antibiotic as per the suggestion of the consultant when I was discharged last time. Unfortunately this all came back up in the waiting room!

I was seen pretty quickly and sent through to a bed. This time, they actually listened to me and I was put right on IV antibiotics, sent for a chest x-Ray (mainly because I'd had chest pain) and had an ultra sound to double check there were no gall stones. The ultra sound showed that my gall bladder is 'angry'. That seems to be the understatement of the year! As Dad says, more like 'bloody furious!'

The last few days have been spent questioning how this happened again so soon... Did I go back to work too quickly after the last admission? Was it because I ate too much on Friday night? Have I overdone it? Then there are all the questions about the future... Will this become a new pattern? When can I go back to work properly? Will I keep letting work down by ending up in hospital? And then come the biggest question of all- When is that phone call going to come?

The phone call that will mean I will never have to worry about a gall bladder infection again as I won't have one anymore. No more missing out on friends birthday celebrations because I've been admitted to hospital. Being able to make plans and know with more certainty that I will be able to go through with them. The option to book a holiday abroad - oh for some real sunshine! This phone call will mean so much to me and I am willing that phone to ring and to find that the next time is the right liver for me. 

For now, I'll muddle along and will keep positive- I still have so much to be thankful for!

Keep Smiling :-)

Update: it's Monday evening and I have been moved to the liver ward. It's not as spacious and much more chaotic than MAU but I will be seen by the right team here. I was hoping to be discharged today but am still in quite a bit of pain when the painkillers wear off. I have been introduced to fentanyl during this stay and boy is that stuff magic! Things are a little bit crazy and emotional to say the least but I do now have Netflix (and possibly an addiction to Dexter). Recommendations welcome :-)

The healing powers of Devon (now with pictures!)

My last post really didn't say what I had intended it to say so I'll have another go!

I got a bit distracted prior to writing my last post and would like to draw your attention to the cause of my distraction. I follow a few other blogs and one is the blog of another patient in a similar situation to myself. Jess is an incredible young woman who is also waiting for a liver transplant and the post that distracted me was about her first phone call. I'll leave it there and urge you to read the blog yourself. You can find it here.

Anyhoo, back to my convalescence week and my time in a Modbury...

I love my hometown and going back for whatever reason always reminds me of what a great little place it is.

You may never have heard of Modbury, the peaceful Devon town with a population of approximately 1500, but it is a town worth knowing about! England is currently up in arms over the new legislation about charging for plastic bags. Modbury stopped using plastic bags 8 years ago after resident Rebecca Hosking, a wildlife camerawoman, showed business owners the damage that plastic bags can cause to wildlife. All Modbury businesses backed the plan to ban plastic bags and have since used paper bags or biodegradable bags. Many businesses complain about the cost of implementing such a scheme but if a small town like Modbury that is predominantly independent businesses can survive making this change during a financial crisis, I don't see why others can't follow suit. The majority of Modbury residents have a collection of reusable bags accumulating in their homes/ cars/ handbags/ pockets so no longer have any need for plastic bags. It's such a simple change to make that if the rest of England could take on with the same enthusiasm as the residents of Modbury rather than complaining about every aspect of it, such a huge difference could be made to the environment.

Charming Modbury Town

I enjoyed being back for nearly a whole week and having no car meant that I was able to properly rest and be chauffeured when I did go out. For once, I managed to be quite well behaved and took each day at a time, trying to build up slowly and rest in between doing things. I had a haircut on the Tuesday at Nicholas Hair and Beauty, the same hairdresser that I went to as a child and always go back to when I'm in the area. It has changed over the years and has been able to keep itself relevant with fantastic staff, treatments and therapies. There is something really lovely about having a haircut. I love having my hair washed and head massaged then catching up with the goings on that in the town that Mum has a missed out!

On Wednesday I took myself for a little wander around the shops in the town. I love that there is such a diverse range of shops in such a small town and that there is so much support. That is the joy of growing up in such a close knit community. Having a dad as a GP in the town meant that my brother and I were quite well known in the town. I also took part in all of the shows and pantomimes whilst Paul was a keen sportsman and outrun everyone at sports day and in The Famous Modbury Mile!

I made sure to visit a few of my favourite shops in the town starting with Pickles. As a child, this place was like an Aladdin's cave of a little bit of everything! From proper dog treats to wetsuits, hardware, kitchenware and everything in between! It hasn't changed all that much as you an still get a whole lotta stuff in this treasure trove but is has brought itself up to date with the layout, kitchenware products and baking bits and bobs. It is also the place to buy your 'Modbury' fridge magnet (as requested by my strange but wonderful other half!). Next stop was the veg/ pet shop to find out if the owner knew of any pet groomers in the area. My little munchkin Coco is having difficulty seeing out from behind all the fur at the moment. The chap knew of someone but couldn't find the number so was going to wait for his wife to get back. In the meantime, I popped round the corner to Modbury Melodies, one of the newer additions to the town run by a wonderful local couple. This is a fab little music shop filled with a great range of musical instruments and goodies. Paul is very knowledgeable and not only runs the shop but teaches alongside. He also organises music events in the local pubs and my parents had performed in one on the Sunday before I visited so I went in for a chat to see how it had gone. Fingers crossed I'll get to see the next one or maybe even be involved! Whilst in the shop, the chap from the pet shop popped in to let me know he'd found the number for the dog groomer- another perk to living in a place like Modbury- people go out of their way to help.

Over the road, I popped into Fifth Sense. Another new shop to the town run by another lovely local team. This is another little Aladdin's cave but a little more girly than Pickles! As you walk in, the scent is beautiful. Upstairs, Isabelle creates gorgeous natural and organic essential oils which in turn become soaps, bath bombs and other luxurious goodies. Fran stocks a lovely range of home ware, gifts, baby goodies and much more. She creates fabulous furniture giving old pieces a new lease of life. There are some stunning lamps created by local artist Dagny Burgess - I noticed that Mum had nabbed herself one of these which looks perfect in the snug room! I left with a lovely little gift from Fran who gave me one of the bath bombs so I could enjoy a relaxing and revitalising bath to help me feel better. Thank you Fran!

Gift Baskets Available from Fifth Sense

Further down the road is the delightful Ringrose shop, stockists of the famous Modbury Mug designed by local artist Kate West. They also have a great range of gift cards, wrapping paper, scarves, jewellery and much more. There are some lovely seaside themed goodies that always attract my attention.

One of the 'Modbury Mug' designs by Kate West

Back down one of the side streets is the Lazy Cow Cafe and the Crazy Cow gift shop. Whilst I didn't take a break in the cafe on this day, I have done many times before and they make the best cakes, lunches and cream teas around! I did take a peek in the shop and was overwhelmed by the incredible smell of baking- I think it was caramel or toffee something at the time! Oh the sweet, sugary temptations! There were freshly made brownies on the counter and cakes being cut ready for decorating as well as a whole range of delectable looking cakes wrapped and ready for sale. I had to make a bit of a swift exit to avoid temptation but did notice some lovely looking cookbooks for sale too.

Seriously yummy cakes at 'The Lazy Cow'

There are so many more goodies in the town that I didn't make it to as that turned out to be quite enough effort for one day. It may be small but I would recommend a visit if you're ever in the area!

On Friday, my Mum took the day off work and we went with the lovely Gill for lunch in Salcombe at The Winking Prawn. It was the perfect day for it. I Couldn't quite believe that it was October. We sat and enjoyed our lunch on the decking outside overlooking the beach with still seas, clear blue skies and a sailing boat making the most of the glorious weather. Lunch was delicious - yummy prawns and dip with a few chippies- and was followed by a quick shopping trip to Salcombe town. We didn't stay too long as mum was feeling a little under the weather and I still wasn't up to long days out.

South Sands Beach, Salcombe in October!

My man turned up in the evening which was wonderful. I'd missed him and needed hugs! On Saturday, Mum and I decided to introduce Caius to Totnes - a slightly wacky town with a bit of a hippy culture that is twinned with Narnia and has it's own shop called Narnia (I'm yet to see any wardrobes, lamp posts, fur coats, fauns or lions for sale there though). We had a lovely little wander around the shops and a tasty lunch in one the the very many cafés before heading home for more rest- a couple of films and a yummy dinner of fresh skate wing caught by Dad on Friday.

Heading into Narnia...

On Sunday I went with mum to visit my grandad and take him out for a coffee. He hasn't been too well and had ended up in hospital the same weekend as me with a chest infection so he wasn't altogether with it but he always enjoys getting out and about. We visited Glazebrook House Hotel which is clearly one of Grandad's favourites. Apparently he loves the coffee there and they know exactly how he likes it. The staff were so friendly and attentive and couldn't do enough to help. To top is off, the hotel is decorated in an Alice in Wonderland theme with giant teacups filled with pansies on the tables outside, rooms named after characters from the books and some wonderfully bizarre decorations adorning the place. Being a bit of an Alice in Wonderland fan, I was in heaven. Everywhere you went there was something to look at. I'm hoping someone will treat me to a short break there someday!

a sneak peek of Glazebrook House

Back home we had a lovely family Sunday lunch together before Caius and I headed back to Bristol and so ended my week of rest and relaxation.

A week after returning to Bristol and I am once more writing from a hospital bed having been admitted yesterday morning. However, since this has taken me half of the day to write, I'm going to leave it there. I also have some pictures to add but my iPad is not playing ball right now!

Keep Smiling (and remember to support local businesses!)
:-)

Back to reality!

After a week of being looked after my Mum, Dad and the dogs, I'm back in Bristol and back at work.

It was exactly the week I needed. Lie-ins, movies, reading, cuddles with the dogs, a little bit of shopping and some family time. 

Whilst I managed to get a good rest in, I still had some emotional ups and downs. This was my biggest worry in terms of going back to work as, while I feel physically much better, emotionally I don't feel in control. At the same time, I knew that the longer I stayed away, the harder it would be to go back so I took the bull by the horns and headed back. It started a little shakily, quite literally! My right hand would not stop quivering and my heart was in my throat. Once I got stuck in though, it settled down and I managed to get through the day without any emotional swings. 

It has been pretty tiring though so I'm now ready to sign off and head to bed fairly soon!

Puppy Cuddles!

Night Night and Keep Smiling :)

Guess who's back, back again...

This post was supposed to be one about the AIH meeting last week. Unfortunately, the week has been a bit tumultuous and I find myself writing from a hospital bed.

Monday started well. Work was ok, Caius had the day off so I had a wardrobe delivered to go in the spare room once all the work on the main bedroom is done. Except that I failed to tell him the bit about awaiting to assemble it and came home to find a nearly complete wardrobe in the bedroom that I had spent Sunday clearing out and clearing. I completely exploded. The poor guy ws trying to be helpful and all I could do was yell at him. Not nice. Few people have experienced the full extent of my temper but Caius is one of them. 

I left for rehearsal and managed to calm myself down. Rehearsal was intense and I was not quite prepared for doing so much dancing. We were learning a big routine and by 8:30 I was pretty tired. After a group tea break, we cracked on but I found myself struggling so sat myself down to watch and learn. About 9:15 I was becoming a bit fuzzy and realised that having not expected to do so much dancing, I had probably had too much insulin- thank goodness for the emergency haribo in my handbag! 

I had calmed down quite a bit by the time I got home and yet another well meaning gesture from Caius was taken badly by me and once more, I snapped. I really do worry about the effect my volatile temper has on my relationship but hoping to get this sorted soon with a referral back to liaison psychiatry. Once I'd been through a full spectrum of emotions ending in hysterical sobbing, we managed a real conversation. We concluded that I probably ought to stop the show and see if I could take some time out from work. I ended up on the phone to Dad at 2am to sort out logistics and see if I could get back to Devon for a few days next week. 

Tuesday was not so bad. I had a meeting with the mentoring team at UWE who are able to provide support for students who might have some difficulties doing the courses for various reasons. They have made sure that if I a can't make it to lectures, there is a note-taker available and I'll be seeing an advisor once a week to help keep me on track and approach my tutors with me should I find myself struggling at any point. This was a real reassurance for me. I followed that with a wander around Bristol Harbourside and Park street to get some raffle prizes for the work raffle. I managed to score some pretty good pieces that went down well at work on Wednesday. 

Wednesday at work was good and I was looking forward to seeing how the raffle would go down on Friday and how the different buffets across the office were going to work out. The evening was lovely and relaxed and ended up with good old Great British Bake Off!

Thursday at uni was better than expected. Having got myself into a bit of a panic about not having managed to do all the reading, I arrived early, went through one of the worksheets which seemed ok and chatted to a few others on the course who were also finding that there was far too much reading to manage. I actually understood the epidemiology lecture and got the maths right and had a good idea about what was discussed in the workshop. The economy epidemiology lecture I seem to be finding harder as there is just so much new information in such a short space of time. The same goes for the two afternoon lectures. They are one after the other with about a 20 minute break in the middle so it's a fairly full on information overload. Again, I found the content interesting though and I'm finally doing a course where I can see practical applications straight away.

After uni, I went to visit the lovely Beth who supplied me with tea and tart. We had a really great catch up (it's been far too long!) but this is where things started to go downhill... It seems that my gall bladder  did not enjoy the pear and chocolate frangipan tart quite as much as I did. There was rather a lot of gurgling and I became quite bloated. I didn't want to ruin the catch up though so did what I do best and ignored it. I figured it would settle down and it did seem to as I drove home and walked about a bit. There was a bit of niggling going on for the rest of the evening but I do get this quite often and it goes a few hours after eating. I tried some bland food in the form of toast for dinner but didn't feel particularly hungry. At 10, I went to bed. I usually find it painful to lie on my right side so sleep on my left right at the edge of the bed. The pain came back a bit stronger. I was trying to dose off but it kept getting worse until I was wimpering rather pathetically at Caius. He dosed me up with codeine and waited to see if it would have any effect. I lay back down and the pain inreased. I started to worry when it was not only painful to breathe in but it was shooting through my shoulder too. Caius made the decision to take me to A&E. By this point I was struggling to stand or find any comfortable position. In A&E I was sent through pretty quickly and got my hopes up that it was going to be a smooth visit.

How wrong I was. They had found me a bed. Despite me telling them that it was almost certainly colycystitis and that someone needed to let the liver team know I was in hospital, no one did. I waited 4 hours to see a doctor who after giving very vague information, spoke to dad who also said that both the BRI liver team and the Royal Free transplant team needed to know that I was in hospital with a possible infection. Unfortunately, having an infection means that I would have to be suspended from the transplant list until it has cleared as surgery at this time would be too risky. No one spoke to either liver unit from what I can tell. The surgical team were called which is normal procedure for a normal colycystitis admission but completely pointless for me as removing the gall bladder is not an option. At around 12pm on Friday I was moved to The Surgical and Trauma Assessment Unit (STAU) and I phoned the liver specialist nurse myself. No one in the department had been informed of my admission. As soon as they knew, the nurse was down on the ward to see me, make sure I was given antibiotics and sent to the liver specialist ward. It was so frustrating that it took all that time to get the right people contacted especially when we had asked them numerous times to get in touch with the liver specialists. I was so angry that I'd ended up having to do it myself in order to get the right thing done. 

Anyway, I was transferred to the right ward and have now been here since Friday evening. It looks like I'm unlikely to be out before Monday as the people I need to see aren't in at the weekend. I also need to be monitored on the  IV antibiotics and need to make sure I am re-listed for transplant ASAP. Once I've escaped, I'll head down to a Devon for some mum and dad tlc, a whole lotta rest and cuddles with the dogs! Until then, I'll be keeping myself entertained with whatever I can find on the iPad - any suggestions very welcome. 

Keep Smiling :-)

In the meantime...

Good evening!

Today I travelled to Birmingham with Caius to go an Auto Immune Hepatitis support conference. It was a great day but I will aim to tell you more about it tomorrow when I've had time to digest all the information.

In the meantime, I would like to point you in the direction of a great blog that I was recently introduced to. It's called Zen Habits and makes a good read every so often for advice on living a 'zen' lifestyle. This may sound a bit 'hippy' to some but I really do recommend it for techniques for taking a new perspective on things.

You can reach the blog here

Keep Smiling :)

6 Months List-versary

Yesterday (September 24th) marked the 6 month point for me being on the Liver Transplant list.

Those 6 months have been fraught with emotion and I think the only way I have managed to keep myself positive is through the support I have received from not only my family and friends, but also from the support group networks that I am a part of. These are primarily online but I have recently been trying to re-kindle a local support group that I set up with the help of the British Liver Trust and the specialist nurses at the BRI. I would love for this support group to take off a bit more as face to face support can be so beneficial to all who attend. It is not just about receiving support, but also about giving support and encouragement to others and sharing information that can help improve care. The presence of the specialist nurses benefits both parties also. The nurses learn more about the frustrations that patients face and are able to take these concerns and find possible ways to improve how patients are treated whilst patients are able to talk to the nurses on a more level field and can express their concerns more openly than in an appointment.

I have also managed to keep myself occupied and entertained during these 6 months. Shortly after I was listed, I downloaded an app to my phone called 'Countdown'. Each time I have a social event or something exciting to look forward to, I put it into countdown with a picture and when I open the app, it shows me how long until each of the events. This reminds me that there is always something to look forward to and stops me sitting around waiting for the phone to ring.

Since being on the list, I have done so much -possibly more than I have done prior to listing and almost certainly more that I should be doing...

I was listed in March. In April, may amazing other half whisked me away for a gorgeous holiday in Sherwood Forest. We stayed in a cabin in the woods and enjoyed a whole host of activities.

Snuggles with a Tawny Owl

The Incredible Golden Eagle

So regal looking!

Friendly Squirrels at Clumber Park

Wollaton Hall - AKA the house in Batman

Selfie in front of Major Oak :)

Segue Experience

Followed by Go Ape!

Our trip up north was finished off with a visit to York to check that my awesome friend Abi had settled into life as a student midwife... including a trip to Melton's for dinner - AMAZING food so if you're ever in the area, I suggest you check it out!

During May, we had a go at swing dancing with a block of swing dance classes for 6 weeks. It was great fun and we had hoped to continue but life and things do get in the way and haven't managed to make it to another lesson since the beginners classes ended. Fingers crossed, we will take it up again one day! 

We also went on a group trip to Snowdonia and Caius and I tackled Snowdon! I made it to the top in 3 hours which I was so proud of...

A bit sweaty and teary but I made it! Just had to get back down again!

Post walking drinks :)

In June, I enjoyed a bit of sailing by heading back to my parents in Devon and taking part in the Eddystone Pursuit race, an annual race for charity where the more you raise, the higher up the leader board you can climb!

I also fulfilled a dream of mine... to go to Glastonbury!! This was an incredible experience and I absolutely loved it. I didn't really see shed loads of bands or visit all the different fields and areas but enjoyed taking in the atmosphere and not having to worry about much. I can't talk about Glastonbury without a nod to the weather which was relatively kind this year. There was a day that was fairly wet and rainy during which I learned that my pac-a-mac from a well known, low cost retailer was not in the slightest bit waterproof! Luckily I managed to dry out and after the rain subsided in the early evening and it held off long enough for me to get back to the tent and into bed. My one disappointment was my tent... I  went with the option that was available - a genuinely vintage tent used by my family when I was young. Putting up the tent was quite straightforward but once it was up, it was evident that me, my inflatable mattress and my bag were not all going to fit! In fact, the inflatable mattress only just fit in there on it's own. I will definitely be looking to do Glastonbury again post transplant and hope that I will be able to make a bit more of it, stay up later and really look at what the festival has to offer.

July saw the celebration of my birthday! This year, I went back to Devon as Caius was in Spain being chased through the street by bulls. Mum had organised a Mad Hatters Tea Party themed open garden event to raise money for the local hospice charity - St. Luke's Hospice. It was a fabulous event despite the weather and I was guest of honour - Alice in Wonderland. I spent months sewing myself the perfect Alice dress inspired by the Tim Burton film version of Alice in Wonderland!

The team showcasing the amazing cakes!

As a keen baker, I thoroughly enjoyed spending the entire day before the event knocking up a selection of sweet treats including fondant fancies, meringue mushrooms, and tea-cup cupcakes. And of course, a giant cupcake with mango and mascarpone filling and topping with crushed meringue... mmmmm mouthwateringly yummy! I was worried there wouldn't be enough insulin in the world to get me through the day!

August was filled with busy sociable weekends including the Bristol Balloon fiesta - one of my favourite weekends in Bristol- I just love hot air balloons. They look so peaceful suspended in the sky and seeing them almost in the garden and surrounding the house with the sunrise as a backdrop is simply stunning.

I also enjoyed a weekend in Dorset with Mum and good friend Susie. We relaxed, ate, and visited the lovely coastline of Dorset.

Date nights with the man included a night at the Hippodrome to watch 'An Evening of Burlesque'. We both thoroughly enjoyed the show and meeting a few of the Artistes afterwards, especially those who complimented my dress and asked if the two of us had recently married as we looked so happy and dapper!

This was followed by an outdoor showing of The Princess Bride at Blaise Castle. Picnic hamper and numerous blankets at the ready we had a fab evening watching the sunset and then a classic favourite. 

There were a few bittersweet events with two leaving parties held on consecutive weekends to say goodbye to two friends who have decided to take some time out to travel to Australia for a year. Laura and Nikki will both be missed but I hope they have an incredible time on their travels.

That brings us to September and possibly one of the biggest challenges for me to face... Taking on a masters in Public Health (as well as working part time and rehearsing for a musical that I'm in in October!)

I still have so much to look forward to and as a lover of the festive season, things are looking good for being kept busy!

One thing that I have been very aware of during the last 6 months is my lack of hospital visits for gall-bladder problems. Whilst this should be something that I am celebrating, it also leaves me feeling anxious. My initial listing was triggered by the repeated admissions I had last year. Each time I was admitted, my blood results flared up massively and whilst they always came down, they never came back down to the level they had been prior to the admission. Although I have been reassured on many occasions that my blood results and various scans indicate that I should be on the list, the lack of admissions still worries me. I have been waiting for so long to be put on the list, always knowing that it was likely to happen, that the possibility of being removed is terrifying. It is evident that my condition is highly unlikely to improve and transplant is inevitable but what if they decide it's not an immediate priority for my health? I was slightly reassured by the recent false alarm call as that does indicate that I am being thought about and am on the minds of the transplant team so will just have to keep that as a positive! 

In the meantime, I will continue to look forward to exciting events to keep myself from focussing on my phone. 

And of course, as always I will Keep Smiling:)

P.s - as I was writing this, I experienced a nice little reminder from my right hand side abdomen that it's not too happy with a stabbing side pain that thankfully subsided quickly!